Baby Hearts Press Blog

In Memory of Bethany

2011-02-21T20:12:00.000-08:00

My friend's daughter died yesterday. She didn't have a heart defect, as so many of my friends' daughters have. It wasn't her heart that let her down. It was her heart and her spirit that made us love her.

My friend's daughter was a special needs child. A child who was abandoned. Unwanted by some but very much wanted by one very special lady. Dee Dee saw past Bethany's disabilities and fell in love with the spirit and heart of a warrior. Dee Dee was more than a nurse and a mother to Bethany. She adopted her legally but more than that, she made Bethany part of a world that would otherwise have forgotten her, discarded her like a broken doll. Dee Dee brought out Bethany's humanity and showed us all that her special little girl had something to share with the world and she would be the messenger to help Bethany deliver her message.

Bethany was paralyzed. She was blind. She couldn't talk like most people but she could communicate. Dee Dee loved Bethany. She made her dresses to match hers and her sister's. Bethany rode proudly in her wheelchair to church and other events. Bethany was part of our community and although there wasn't much that most of us could do for Bethany, we could acknowledge her. We could smile at her smiles and if we could see past the paraphenelia necessary to keep Bethany alive, then we could see an angel here on earth.

Bethany is no longer here to remind us of the fragility of life. She is no longer here to touch our hearts because of her courage. Doctors told Dee Dee that Bethany wouldn't survive, but Bethany had other plans. She beat the odds time and again. She made a mother tiger out of Dee Dee -- one of the strongest child advocates I know. Bethany taught Dee Dee what it means to fight and she fought the good fight.

Rest in heaven, sweet Bethany. Maybe now you can run and play, laugh and sing in a way you couldn't do here on earth. I hope that you can. But I also hope that you can send a rainbow Dee Dee's way, or maybe a butterfly or some kind of sign to let her know that part of you is still here and that part of you will be watching over her now. Dee Dee was your guardian angel for years, Bethany, but now it's your turn to be hers.

CHD Conference in Fort Worth on February 19, 2011

2011-02-15T14:56:00.000-08:00

Greetings, Friends of the CHD Community!

Today I received a phone call from Kathy Grieser of Cook Children's Hospital. She is part of the planning committee for the very first congenital heart defect conference for parents at Cook Children's Hospital. I signed up for the conference a few weeks ago thanks to Facebook. I think it's great that we can use Facebook to let us know about events of interest to us. Here is the link for anyone else interested in attending this conference: Cook Children's CHD Family Conference

Kathy told me that she saw my books on the Internet and invited me to bring some to the conference. I'm glad I will have have my husband, my father and my son there to help me! We will be bringing books, DVDs and audio CDs of AHA conferences where I have spoken and bookmarks for everyone who attends. We will offer a one-day, in-person special: Any book 40% off or any 3 books for $35 (plus tax). This is a HUGE savings and will only be done in Fort Worth at the conference. We will not have the ability to process credit cards but we will accept cash, checks or payments from PayPal. We will have our computer but I'm not sure the hospital has Wi-Fi. I have a called to find out, but don't know the answer yet.

Paul Cardall will be the keynote speaker and he will also play piano for the conference attendees. I can't wait to meet him! He will also have his CDs available for sale at the conference.

There are special activities for the children and there are even teens who will be present. I'm glad Alex will not be the only teenager at the event. I think he's glad that I'll be attending the event as a participant and not as a speaker (telling stories on him!).

I hope to see some of my Internet friends at the event. Please check out the Facebook page for more information. You must RSVP to attend. I believe there are at least 80 people registered already! It should be a great crowd and a great day of activities!

Happy Congenital Heart Defect Awareness Day!

2011-02-14T11:58:00.000-08:00

Greetings all Heart Friends and Family!

Today is Congenital Heart Defect Awareness Day. Today is the day we parents have chosen to request that states and countries recognize that Congenital Heart Defects are the NUMBER ONE birth defect! Most people who have not been affected by congenital heart defects are aware of that statistics.

According to the March of Dimes, about 1 in 125 children are born with a congenital heart defect but I have heard that the real statistic is probably closer to 1 in 100. The American Heart Association used to list at least 35 recognized congenital heart defects, but in looking at their revised webpage:

American Heart Association CHD Statistics

I see that they have modified that number to say there are 15 recognized congenital heart defects. I think they have broadened the scope of some of the heart defects to make it simpler for others to see where their heart defect is classified. Another interesting thing that the AHA did is change their wording of "congenital heart defect" to "congenital cardiovascular defects." I hope that in changing the wording they don't make it more difficult for others to find the information they need.

But what is in a name? William Shakespeare wrote, ""What's in a name? That which we call a rose
by any other name would smell as sweet." It doesn't really matter if we call something "congenital heart defect" or "congenital cardiovascular defect" as long as people can understand what is being discussed and can find the information they need.

I think it's a pity there isn't more public knowledge about congenital heart defects. It's up to us -- the parents, grandparents and people born with heart defects -- to let the world know about these fairly invisible defects so that others can support research and advocacy in the realm of congenital heart defects. There is no popular star who has been willing to come forward and claim congenital heart defects as their cause -- unlike Jerry Lewis (muscular dystrophy) or Mary Tyler Moore (diabetes) even though congenital heart defects do not discriminate. There have been stars who have been affected by heart defects, but no one has stepped forward to create a campaign of awareness. Instead it looks like that job has required a grassroots effort.

In that vein, I am here blogging about CHDs. There are many others doing the same. A dear friend of mine, Steve Catoe, used to have a wonderful blog called Adventures of a Funky Heart where he talked about current events in the CHD world and what it was like to be an adult with tricuspid atresia. He was a shining light in the CHD community and I was so sorry to hear he passed away last year. But there are plenty of other sites out there such as: Congenital Heart Defect Awareness, Nathan's Prayer: Hope for Children with Congenital Heart Defects or Paul Cardall: Living for Eden. There are websites with pages of free information such as Congenital Heart Defects.com, California Heart Connection: Handouts, Forms and Articles or National Heart, Lung and Blood Institute: Congenital Heart Defects to name a few. There are Facebook groups, Yahoo! groups, private listservs and public listservs available to help people connect.

The one thing we parents of children with heart defects want to know is that We Are Not Alone.

There are conferences to help parents and congenital heart defect survivors such as Heart Heroes Conference, the ACHA Conference and Palmetto Hearts CHD Conference. There are summer camps for children (see Congenital Heart Defects.com: Camps). There are movies that deal with congenital heart defects and videos on YouTube. There is information out there, we just don't have a celebrity spokesperson.

With over a million congenital heart defect survivors in the Unites States alone, CHDs affect literally millions -- possibly billions! -- of people worldwide.

I hope all of you have a terrific Congenital Heart Defects Awareness Day. Spread the word. Share an inspiring story and remind people of just how valuable their hearts are.

Sincerely,

Anna Jaworski
a CHD Heart Mom

Heart Week

2011-02-08T12:02:00.000-08:00

Greetings, Heart Friends! This is a very special week. February 14th, as well as being Valentine's Day, is also Congenital Heart Defect Awareness Day. All week long people around the world will be celebrating this special time. Many of us are counting our blessings that medical technology has been able to save our "heart children." Some of us are remembering special people we know of who were born with heart defects and are now angels watching over us.

During this Heart Week please consider talking to your family about organ donation. Many people do not discuss this important issue. This is an important topic for conversation. If something were to happen to you, would you want to donate your organs? Your eyes? Your bones? If you could save a life as yours was ending, would you?

Alexander would not be with me today if it were not for the kindness of others. Some people have donated blood to him. He had cadaver tissue at the ready during his first open-heart surgery (although he didn't end up needing it). We have friends whose children would not be here today were it not for the sacrifices other families made.

Kevin Kienlein, a contributor to "The Heart of a Father" is the most recent recipient of a transplant that I'm friends with. Kevin received the heart and lungs of a generous individual and is recovering today. What a miracle! Out of the depths of despair, one family found it in their hearts to give Kevin their daughter's heart and lungs and because of that, Kevin will soon be playing in his band, taking photographs and enjoying every breath he takes.

Happy Valentine's Day! Happy Congenital Heart Defect Awareness Day! Blessings to all of you who talk to your families and decide to give the gift of life to someone else.

Every Heart Has a Story

2010-08-23T09:57:00.000-07:00

At 12:00 CST there will be an international blog-sharing event called "Every Heart Has a Story." I've never taken part in a blog sharing before, but this seemed like a fun thing to do.

One of the reasons I put together The Heart of a Mother and The Heart of a Father is because I knew that all of us heart moms, dads, grandmothers, grandfathers and survivors have a story to tell. I knew Alex's story was helping people all over the world, but sometimes people contacted me asking me questions about tetralogy of Fallot, tricuspid atresia, Shone's syndrome and other heart defects which had nothing to do with Alex. People asked me how I survived the hospitalizations, the surgeries and how surviving all of the trauma affected my marriage and faith. Luckily for me, I came to know people who could answer these questions and it is those people who wrote for my books and shared their stories. Blog sharing is the same concept -- except it happens right here on the Internet. One person after another links to their blog and BOOM! They've shared their story. Instantaneous sharing. Wow.

Alex's story began in 1994 when he was born with hypoplastic left heart syndrome. Most people will blog about finding out their child had a heart defect and the surgeries they've survived. Because Alex is sixteen years old, I'd rather not do that. I'd rather focus on where he is now.

On August 11th we celebrated Alexander's 16th birthday. He spent the day at Texas State Technical College where he is working towards an Associate's Degree in Robotics. It was the week before finals and he had three classes ending the next week.

After school, we drove home (it's about an hour's drive one way) and got a little snack before Toastmasters. I belong to Texas Stars Toastmasters and Alex was attending our meeting so we could take him to dinner following the meeting at his favorite restaurant -- a Japanese steak and hibachi restaurant called Nami's.

We had a lovely dinner at the hibachi grill. It's always so much fun to sit at the hibachi and take in the show. At Nami's the chef always does a neat trick with tossing an egg via spatula into his chef's hat, making an onion "volcano" and just generally impressing us with his culinary skills at creating a wonderful meal.

Friday night we had a birthday party for Alexander and he invited 13 boys over! Not all of the boys could make it, but I think we ended up with plenty of boys present. They had fun playing pool and video games. Two of the boys brought guitars and played some music for us. Alex and Ryan even broke out the gift Ryan bought and played a game of Magic. Although it was a bit noisy, it wasn't unruly. It was fun!

(l-r back: J.R., Alex, Nic, Ryan, Cheyne; l-r middle: Ryan, Max, Simon, Kyle, l-r front: Elliot, Philip)

I let Alexander invite the boys to sleep over and some of them did. Nic, Simon, Kyle and (little) Ryan had a robotics tournament the next day, so they couldn't spend the night but Cheyne, (big) Ryan, Philip, J.R., Max and Elliot could. I wonder if this will be the last time Alex has boys spend the night like this? Our children grow up way too fast. Alex and Elliot are already in college. I'm so glad he had this opportunity to bring his friends together.

Here are some photos of the boys having fun:

Philip, Max and Elliot bought Alex the silly "Sweet 16" birthday card -- which they intend to share with the next birthday boy who will turn 16! :-) It's going to be a running joke amongst this cool group of friends.

My wish for Alex is for him to continue to defy the odds regarding HLHS -- for him to continue to pursue his dreams (studying robotics and eventually engineering, and writing a sci-fi/fantasy book) and to maintain a close relationship with his family and friends. After all, if a person has his health, family and friends nearby, what more could he ask for?

X Zone Radio Show

2010-08-17T09:21:00.000-07:00

Today at 2 p.m. Eastern Time I will be doing a radio show with Rob McConnell called The X Zone. I am so excited to have the opportunity to talk to him about congenital heart defects (CHDs).

Just this summer I decided to purchase a marketing program for Baby Hearts Press. Since my educational training is in special education, I am weak in understanding how to best market the books and resources produced by Baby Hearts Press. Part of the marketing program I purchased includes opportunities to pitch story ideas to radio shows. After three tries, I finally got it right! I have taken a number of marketing workshops and they all stress the importance of having a good hook. This is something that seems to be a bit difficult for me -- making what I do sound relevant and important. Even though I know how important it is to advocate for the CHD community, I am not always successful at creating just the right pitch that others find interesting.

Timing is everything. I've given similar pitches over the years and have been fortunate enough to be interviewed on a number of radio shows and even a couple of television shows. All of the television show interviews involved new books coming out. Most of the radio show interviews involved Congenital Heart Defect Awareness Day or an event where I spoke. This is the first radio show for me to do that hasn't required a specific event for the coverage. I believe that there is more interest in congenital heart defects because many people are taking the time to spread awareness.

In July, a cross country biker, Nels Matson, stopped in Delaware County to meet Camden Cheshire -- a little boy with the same congenital heart defect he was born with. Nels Matson is on a quest to spread awareness about congenital heart defects and the way he has chosen to do so is to bike 2000 miles across the United States to raise funds for the Children's Heart Foundation. Meeting Nels was encouraging for the Cheshires since they had never met anyone else with their son's heart defect (total anomalous pulmonary return). His story was featured on the news in Philadelphia.

Shaun White, American snowboarder and skateboarder, did much to provide inspiration to the CHD community as he competed in the Olympics this winter. Born with tetralogy of Fallot, Shaun clearly demonstrated that having a congenital heart defect does not have to limit a person's ambitions. He brought home Gold medals for the United States in 2006 and 2010 for snowboarding. He has competed and brought home medals in both the Summer and Winter X Games in different sports.

Boston Med did a story about a couple having a baby with a congenital heart defect in July 2010. The father of the baby was a soldier who had been deployed to Iraq. It appears the baby is doing well.

In 2004, Alan Rickman and Mos Def starred in a wonderful made-for-television movie, Something the Lord Made. This movie shows the relationship between Dr. Alfred Blalock and Vivien Thomas -- two gentlemen instrumental in developing a protocol for saving "blue babies." The movie won a number of awards, including three Emmy awards, two Golden Globe nominations, two Black Reel awards, an NAACP Image Award, a Directors Guild of America award and a Writers Guild of America award. The movie was based on an award-winning magazine article featured in the Washingtonian by Katie McCabe. The article also spurred a public television documentary, Partners of the Heart.

Congenital heart defects are the Number One birth defect and much more common than people realize. In 2003, John Ritter passed away due to an undiagnosed congenital heart defect (aortic dissection). Sadly, a 12-year old boy and 4-year old boy passed away at Disney, after riding certain rollercoasters with sudden accelerations and extreme forces. Both boys had undiagnosed heart defects. Of course there are far too many stories of fit athletes who suddenly pass away on the basketball court, football field or track -- only to discover that some had cardiomyopathy -- an enlargement of the heart that, if left untreated, can be fatal.

Currently there are a number of organizations striving to make the public aware of this birth defect. There are over a million people in the United States alone who are CHD survivors and the number is growing. My son is one of those survivors. He turned sixteen last week. He is my inspiration and it is because of Alex that I write and publish books through Baby Hearts Press.

I hope you all will tune in to the X Zone Radio show later today. Here is the link to the X Zone Radio Show: http://www.xzonetv.com/. If you miss the program, there are podcasts of previous shows available at this website: http://itunes.apple.com/podcast/the-x-zone-radio-show/id295327298.

Thanks to all of my Facebook friends who gave me suggestions on questions to ask/answer. I think I came up with an interesting set of questions and answers thanks to your input. I hope some of you will call in!

Living on Borrowed Time?

2010-06-30T17:48:00.000-07:00

Greetings Friends of the Heart!

Tonight I am sitting at McLennan Community College waiting for Alex. Alex was born with a congenital heart defect known as hypoplastic left heart syndrome (or HLHS for short) way back in 1994. In August Alex will turn 16 years of age.

Sometimes I feel like Alex is living on borrowed time. Then again, sometimes I feel that I am, too.

When Alex was born, his father and I both felt something was wrong. For two months we took him to ER doctors, the pedicatrician, lactation consultants and Newborn Follow-Up. Never yellow enough for the billi lights nor sick enough to be admitted, he coasted along with me keeping a journal of all of the dirty and wet diapers he made, how many times I nursed him and how often I gave him sunbaths (to rid his body of the "breastmilk jaundice") while my husband asked everyone he worked with (he was an ER nurse) to look at Alex to see if they felt the same concern he did. It wasn't until Alex's second-month well-baby check up that we were told something was seriously wrong. He was admitted. The next day Alex and I were in an ambulance flying down I-35 toward University Hospital in San Antonio.

"He has a 5% chance of surviving the surgery. I'd just take him home to love him for what little time he has left." This was the advice given to us by Alex's cardio-thoracic surgeon and echoed by his pediatric cardiologist.

When he survived the first open-heart surgery, we were told he only had a 25% chance of making it to age 5. Alex is 15. He's beaten the odds time and again.

Is he living on borrowed time?

When I was a little girl, my mother said I went through a period in infancy where they were worried because I wasn't gaining enough weight. I wonder if I was a Failure-to-Thrive baby like Alex? I don't believe that term was used with my mother way back in 1963. Instead, I was admitted to the hospital and the formula my mother used with me was changed until I seemed to do better and Mom and Dad were told they could take me home.

As a little girl I remember hearing my grandmother talking to my mother. "She just a little angel," my grandmother said in a rather hushed tone to my mother (thinking I couldn't hear them). "You know the good die young. She's probably going to die young."

Why my mother and grandmother had that conversation more than once where I could hear it, I'll never understand. I felt like most of my life I was living on borrowed time. I remember rushing to do things because I was afraid I would die young and miss the opportunity.

Conscious of this, I've tried to NEVER make Alex feel this way and yet, I see him rushing to do things, just like I used to. Right now he is 15 years old and taking 4 college classes this summer (including this chemistry night class) as well as two homeschool classes (American history and Driver's Ed) because he wants to graduate a year early. He has dreams and plans and he always has.

Maybe when you feel that you might be living on borrowed time, it makes you use your time a little more wisely. Alex is always seizing the opportunity to be with friends, to learn something new and to write, write, write. Although he is studying robotics at Texas State Technical College, he has dreams of writing books, too. He belongs to a writers' group in Austin, Texas which has meetings twice a month. This night class has taken some time away from his writers' group (The Slug Tribe), but it hasn't stopped him from writing.

Alex is a prolific writer. He writes for FanFiction under a pseudonym (UchihaLord15). He has about six stories going and has over 200 fans! He has over 30 chapters online. But in addition to this, he is working on two science fiction/fantasy books. He knows he still has a long way to go to become the writer he dreams of being, but he doesn't let that stop him from writing, reading and sharing his work with others.

Alex has done more with his 15 years on this earth than many adults I know. He is a daily inspiration to me, although he tires of hearing that. He would rather talk about Manga, Bleach or one of the stories he's working on. He lives very fully in the moment.

Sometimes I think living on borrowed time is actually a blessing. We don't neglect to say "I love you" often. I may not have a heart defect like Alex, but I know my heart and his are somehow connected and if anything happens to him, it will affect me profoundly. Maybe that's why I cherish our drives to Waco everyday. It's a bit tiresome driving about an hour one way M-F in the heat of the Texas summer, but I wouldn't trade our talks in the car, seeing him sleep next to me when he's tired from his night class (we usually get home between 10 and 11 p.m.) or our little naps in the afternoon -- like the one we took yesterday during a surprise rainstorm. I think that living on borrowed time just makes us appreciate all these things a little more.

Congenital Heart Defect Documentary

2010-06-21T13:30:00.000-07:00

Greetings CHD Friends and Family! I hope everyone had a terrific Fathers' Day. I know my father and the father of my children really seemed to enjoy the weekend.

Today I am excited to write about a new project I just found out about thanks to Jill Sorensen (a contributor to The Heart of a Mother and a Facebook friend). Jill sent me a link to a sample of a documentary being produced to inform the world about congenital heart defects.

Here is a link to the documentary:

http://www.congenitalheartdocumentary.com/CHD_Website/Videos.html

The part of the documentary that is available to see at the link above is very well done. I was impressed with the breadth and depth of coverage conducted in such a brief time span. I really felt that most of the most important issues we face in the CHD community were covered, although this documentary leaves an open door for more documentaries about congenital heart defects to be created.

At the end of the video is an email address if you want to get more information. Naturally I wrote to Betsy to tell her how excited I was about the project and to see if I could somehow get involved with the project. I spent over an hour talking to Betsy about this monumental project today.

Are you interested in getting involved? If so, you can send a photograph of yourself (if you are an ACHDer), your child or grandchild born with a congenital heart defect for a special part of the documentary which will feature snapshots of our CHD members. I will be sending a photograph of Alex for them to include once I decide which one I want to use! If you would like for your photo to be considered, please send a jpeg to elisa@tmktv.com along with a description of the person's heart defect and a line stating that you give the Children's Heart Foundation permission to use the photo in their CHD documentary.

Interested in helping the Children's Heart Foundation finish their project? Although over half of the funding needed for this project has already been procured, they haven't reached their goal yet. If you are interested in contributing to the project financially, you can visit http://www.childrensheartfoundation.org/ and there are a variety of ways you can give to this non-profit organization. If you want the money to specifically go to the documentary project, you will need to state this in the memo section of your check (if you mail them a check) or in the Additional Information / Comments section of the online giving page. (Just click on the Donate Now! tab at the top of the home page to donate funds to this worthy enterprise.)

I imagine most people have no idea that congenital heart defects are the #1 Birth Defect. I know I was surprised to discover this fact years ago. Why don't people know about this? I think we haven't done as good a job informing the public about the pervasiveness of this birth defect as we could. For the most part, it is a "hidden" defect and it is rather easy for our members to disguise the fact that they have had to endure open-heart procedures, use pacemakers or other assistive devices because they usually are not visible. This means that the public is rather ignorant about the high percentage of children born with congenital heart defects and the even higher percentage of individuals now living to adulthood with their heart defects. It's up to us to inform the public about CHDs, what they are and how they impact our lives.

I hope you'll take some time to view this documentary and if you agree, as I do, that it is a worthwhile project, then I hope you will contribute to the cause financially. If every member of the CHD community gave just a few dollars, the Children's Heart Foundation would have no difficulty finishing this project and getting it out there to spread, not only the news about congenital heart defects, but more importantly -- the HOPE that is available to those born with CHDs today.

June Special!

2010-06-10T13:26:00.000-07:00

I am very excited to announce we have a June Special -- just in time for Fathers' Day! From June 7th to June 27th we are offering The Heart of a Father for half price! Our regular price of $20 is cut in half to just $10! What a perfect Fathers' Day gift for the father or grandfather of a child with a congenital heart defect!

This special is only available through the Baby Hearts Press website (http://www.babyheartspress.com) so hurry and order your copy today!

May News

2010-05-01T20:46:00.000-07:00

Greetings, Friends! It's hard to believe that it's already May 1st! Happy Spring from sunny Texas!

First of all, I have some exciting news: our May Special is "The Heart of a Mother" for half price! That means that instead of the regular price of $25.00, for the month of May, this one-of-a-kind book will be available for only $12.50!

I am also going to use the month of May to catch up with former contributors to "The Heart of a Mother." I will be letting you read excerpts from their essays and an update on how those children are doing today. I will start with one of my own essays.

My essay, Developmental Delays - Speech and Language, detailed Alex's journey after his second open-heart surgery left him with paralyzed vocal cords and a partially paralyzed diaphragm. I wrote this piece when Alex was only three years old. Here is an excerpt:

. . . Two months after the surgery, Alexander's vocal cords began to work again. It was so odd when I began to hear his first cries. They sounded like a kitten meowing. So tiny, so inhuman. I had anticipated his needs for so long that he hardly had reason to cry, and I was glad. That cry brought back to light all that Alexander had been through and fed my own insecurities and fears about his life. I wanted everything to go back to normal, but that would not happen for quite a while.

My bachelor's degree is in Speech Pathology even though I knew I would someday teach the deaf. Five years after I quit teaching at Texas School for the Deaf in order to stay home and raise my children, I was to see an even greater purpose for all of my training. I never wavered in believing that God had a special plan for me. I prayed for guidance on more than one occasion and did things that I felt led to do by a force greater than myself. It was now many years later that I would come to see the real benefit of my training.

"Honey, we need to talk," I began as I sat down with my husband at our kitchen table one night after the children were in bed. I poured out my worries and concerns about Alexander's speech development. Clearly he understood all we said to him, but he could not make himself understood, and the temper tantrums were occurring more frequently. "He's frustrated because he can't make himself understood," I said to Frank. Frank nodded and told me that he had had the same concerns but trusted me to do what was right. "We're at a crossroads," I said gently. "It's time to make a decision. We're going to have to have him tested by a speech pathologist . . ."

"NO!" Frank erupted. "I'm not going to have him tested," he said as he got up and paced in the kitchen.

My heart ached as I saw my husband so wrought with grief. "Well, I would like to give him three more months before we test him," I continued evenly. "If it's okay with you, I want to try something a little radical. I think it might work. It worked with some of my students in the past."

Frank stopped moving and sat down again. He took my hand and looked into my eyes. "I trust you," he said again. "What do you want to do?"

To read the rest of the story, turn to pages 62-67 in "The Heart of a Mother."

Update:

Alexander is now 15 years old and is a dual-credit student at Texas State Technical College (and homeschool high school). He is currently studying for an associate's degree in robotics. Although we spent a long time helping Alexander to recover his voice, it was time well spent.

As an elementary school student, he performed on stage with his brother (and friends) at the Temple Civic Theater. He also read to preschoolers at the Temple Public Library during Story Time. As a middle school student, he was a Director at Recordings for the Blind and Dyslexic.

Alexander also had his own robotics club for six years. During those years, his teams competed in regional, state and international competitions. These competitions usually required oral presentations, which Alexander not only performed, but usually wrote or co-wrote with his teammates. As a 9th grader, Alexander participated in a Youth Leadership Program sponsored by a local Toastmasters club.

Alexander prefers writing to public speaking, but he is quite capable of expressing himself and making himself understood. I feel fortunate that I had the training needed to help him recover his voice. I cannot emphasize enough the importance of early speech training for our heart children who experience speech difficulties after surgery. Open-heart surgeries save our children's lives, but it is up to us to ensure that they are able to lead quality lives. Essays like the one I wrote in "The Heart of a Mother" help to explain what you can do to help your heart child if he or she is experiencing difficulty with speech or language development.

Equine Assisted Goals for Leadership Enhancement (a.k.a. The Horse Course)

2010-04-03T06:37:00.000-07:00

This time last week I was already getting dirty. I was out on a ranch in the middle of nowhere, somewhere in Central Texas, and I was awaiting the arrival of the facilitators of the day-long course I had signed up for.

Anyone who knows me very well at all would be surprised by all of the above. Even though I live in Texas, I seldom go to ranches. I live in a suburban town (Temple) and am NOT an outdoors person. I love gardening, but I even do that in moderation. I usually don't like to be outside much because 1) I don't like to get dirty, 2) I sunburn VERY easily, and 3) the heat usually exhausts me. But one of the main reasons I don't like to visit ranches is because, (sorry to all my ranch-owner friends) -- they are smelly. I have a heightened sense of smell and I get a headache easily if smells are overwhelming.

Yet the course I signed up for and was ready to participate in last weekend was a personal growth workshop and it utilized horses. I NEVER would have signed up for a course like this except for the fact that my dear friend, Tim Manson, was the man leading the workshop. A fellow Toastmaster, we see each other once a week and Tim has always been supportive of my speaking endeavors and my children. We can always count on Mr. Manson to buy Boy Scout popcorn and when Alex's robotics team went to the international competition, Mr. Manson was one of the team sponsors. So when my friend, Katie Thieme, asked me to take his workshop, I decided I would be supportive of Tim and endure a smelly, hot, dusty (or muddy) day.

To my delight, my father, my best friend (Janet Scherer) and a number of other Toastmasters had decided to join us. Frank was out of town, so I was without my better half, but I was determined to make the most of the day. I believed it would probably be a once-in-a-lifetime workshop.

Here is Janet, Dad and me standing by the gate holding the saddles for a later activity.

Naturally, since Dad was driving and I was also in the car, we started the day by getting lost. Never mind I gave Dad a GPS for Christmas a few years ago. Ranches like the one we were looking for aren't on the GPS! But thankfully we have cell phones and with one call, we got turned around in the right direction and found our way to the ranch. This actually seemed to foreshadow this whole experience for me.

I didn't really know what to expect with this workshop but I hoped I would gain some vision about what I need to do with my life and my business. Everything is about to change for me. I only have 4 more semesters to homeschool Alex and then he will be ready to go off to college. He is chomping at the bit to leave! He has his heart set on Franklin W. Olin College in Massachusetts right now and that's a far cry from Temple, Texas. Instead of being a teacher, driver, principal, etc., I will be an empty nester. I know I need to lay the foundation now for me to be busy when he's gone or I'll be driving Joey crazy by visiting him too much at Southwestern.

When the horses first came into the corral I was amazed at their beauty, their spiritedness and their grace. This was the first time for them to be in that particular corral and they curiously explored everything (including the tents, tables and other human paraphernalia). They brought a child-like quality to the workshop that was perfect. Innocent, unassuming and trusting, I wonder if they had any idea what paces they would be put through on our behalf. Tim told us that horses live in the moment. I think we can learn a lot from horses just in that regard. How many minutes a day do we waste worrying about tomorrow or mistakes we've made in the past? There is something to be said for living in the here and now, being totally focused on only what is right in front of you and savoring the moment.

Unbeknownst to me, the horses would teach me much more than that. Our first task was to catch and halter a horse. Tim was ready to just let us go do it, but I had no clue what I was being asked to do, so I asked for help. Even if I caught the horse, I had no idea how I was going to put that halter on the horse and secure it. Tim kindly showed all of us what to do -- once. Janet, Laura and I formed a group and were told that each of us had to catch a horse and halter it. We noticed really quickly that if all three of us approached a horse, it would get spooked and run off. We decided to divide and conquer. Janet owned a horse years ago, so I knew she'd be fine, but I wondered how Laura and I would fare.

I wandered off in my dad's direction. To my surprise, he'd gone for Jack, Tim's miniature horse. Jack, we were warned, was a biter. He seemed to be the most spirited and curious horse in the pen. He knocked over the trash can and seemed to get into everything. He tried to be the leader of the pack, but Sky, the biggest horse amongst the group, put him straight. Everyone seemed a bit afraid of Jack after hearing how he'd bitten Tim in the backside just the week before and left a mark! Everyone except for Dad, that is. I watched as Dad bravely went up to Jack, spoke gently to him and easily put the halter on.

Dad actually putting the halter on Jack

Dad walking a caught and haltered Jack

Even after watching Dad catch and halter Jack, I didn't know if I could do it. I grabbed Tim and told him I still did not understand how to put the halter on. When he looked at Dad's halter, he laughed and told Dad that he'd done it wrong. Dad got credit for catching and haltering Jack, but he'd done it wrong. He released Jack and to my surprise, Jack let me catch him and halter him. (Meanwhile Dad caught and haltered another horse!) With Tim's help, I did it the right way. But I wanted to be able to do it myself (like Dad). I released Jack and looked for another horse. To my delight, Cherokee seemed willing to let me try to do it with him on my own.

Tim taught me to sling the rope around the horse's neck and catch it in a generous loop -- enough to "hold" the horse without actually being a lasso. My problem was how to hold the horse with the loop and still be dexterous enough to put the halter on. Somehow, Cherokee was patient enough with me to let himself be haltered.

While Cherokee eats, I attempt to put a halter on him

Here I am happily smiling after the deed is done!

Delighted I could do it, I looked for the other members of my team. Janet, of course, had caught and haltered her horse.

Here's Janet with Smoky, the horse she caught and haltered

But, as I suspected, Laura hadn't fared as well. She was still upbeat, but I could tell she was a bit frustrated at not being able to catch a horse. I told her about Tim's trick of using the rope to kind of lasso the horse and we worked together to catch her horse.

Here is a smiling Laura, after she haltered Easy

Laura and I take the halter off Easy

With our entire team successful, we headed back to the tents and discussed the activity. The main points I learned from this activity were: 1) you must confront the horse head on. If I tried to catch the horse from the side, it would just run away. I also couldn't touch the horse and expect him to stand still unless I had a rope around his neck, 2) once I had the plan in motion, I had to believe I could halter the horse and trust I could make it work and 3) I had to let the horse go when I was done.

This transfers to activities we must accomplish in real life. So many times I am more successful with the task at hand if I just confront it head on, believe I can do the task and actually trust my plan and then, when I'm done, let it go. I sometimes am hesitant to let go of a task and will try to perfect it. That is frequently a mistake and a time waster. I think I need to hold these lessons from this equine activity in my heart and let them guide me.

Our second activity sounded like it would be harder than it was. "Leadership in a Box" was the name of the activity and our goal was to create a team to catch a horse, guide him to a "box" -- which was a set of PVC pipes laid out in a rectangle on the ground -- and keep him there for 6 seconds -- without a halter or ropes of any kind.

My team consisted of Dad, Janet, Laura, Joan, Nancy and me. Dad immediately took charge of the group and decided that we needed to have 4 people stay at the box to stop the horse once they'd guided it to the box and only 2 to "catch" the horse. The goal was for everyone in the group to be responsible for getting the horse in the box. Our group was pretty successful. Four out of six of us were able to do it. The last two people had trouble catching the horse -- I think partly because the horses had tired of the activity.

Here you see Nancy with the horse in the box

Here are Dad and Joan with the horse in the box

I learned a number of things from that activity. The first thing I learned is that the leader doesn't always have to lead from the front. Some of our leaders wanted to catch the horse, guide it to the box and keep it there. Others knew that Dad was really good with the horses, so instead of doing everything themselves, they used our group's strengths to make the task achievable. Dad and Joan seemed best at catching the horse (although Janet and I did it, too). Laura and I were pretty good at bribing the horse with freshly picked grass. Laura and Nancy were good at helping to stop the horse. We all discovered that our task was much easier when we played on each other's strengths. I think we were successful because we all had the same goal, we were happy achieving the goal by whatever means necessary and we rejoiced in each other's successes.

Communication was key. Luckily, everyone in our group is involved with Toastmasters, so we practice communication on a regular basis. I think that really contributed to our ease with communication of ideas and how we felt we could comfortably rely on one another.

By this time, we had peeled down from 3 or 4 layers to just one. The wind had kicked up enough that we had to quickly stake the tents down before they blew away. We had eaten a bit of food and we were all getting pretty tired. The clock was ticking, too. It was closing in on 4:00 and many in our group had plans for the evening. Tim decided we had time for one more activity.

Saddle Up -- we had to split into groups of 3 and link arms. The center person was the "brain" and the other two people were the "arms" and here's the tricky part -- the arms couldn't do anything unless they were told to do so by the brain and they could only use their outermost arm! This was quite a challenge.

Nora, Tim and Joan demonstrate how we have to link up for the Saddle Up activity

Before we began saddling the horses, we had to clean them. It looked like our horse had been rolling around on the ground. He had a lot of dirt in his coat and much of it was dried mud. There were three different kinds of brushes to use. Only the softest brush could be used on the head and the legs. Stiffer brushes were used on the back, stomach and rump -- although we had to be careful in that area!

Here I am cleaning Sky

Janet and Nancy also clean Sky

After the horse was clean, we had to put a blanket on the horse and then the saddle. Laura and I (the arms) were arguably the smallest people at the workshop, so Tim took pity on us and gave us a light saddle to hoist on the horse. Jack had been put away earlier, so our horse was still pretty tall compared to Laura and me. The hard part was getting the saddle straight and in the right position. It seemed like each time we did it, it was either too far forward or too far back. When we finally got it on right, it didn't look crooked, but I'm glad no one had to get in that saddle to test it. I'm afraid it might not have been the best ride.

Janet and Laura pose with Sky after he's been saddled

The lessons from this activity revolved around being flexible and patient. Janet was a good brain, but she kept wanting to point to things and to help us out. It was a real challenge for Janet to simply give verbal commands. Laura and I, however, were persistent and in the end, it paid off. It delighted me that even though Laura and I were small, we were able to lift the saddle onto the horse together. Still, I am humble enough to know that we might not have achieved success had we been required to use a much heavier saddle.

After the final lesson was discussed, we started to clean up and get ready to go home. I was very tired, a little sunburned and extremely satisfied. I had been able to complete every mission with my team and I had a newly-found confidence. I was amazed I had been able to catch a horse, halter it, guide it to a box and finally saddle a horse. These are all activities I had never done before. I wasn't sure, at the beginning of the day, if I would be able to do everything Tim had planned, so it was a great delight to me that I achieved success. Clearly, I didn't do it on my own, but in real life, we don't have to accomplish all of our goals independently. In fact, it feels better when there is someone there by your side helping you achieve your goal. Then you feel a sense of community even as you are accomplishing your goal. And better than that, you have traveled along a road together, have experienced frustration together, worked out problems together and grown together. Because of this, I will always feel a certain "kinship" with my other workshop participants -- whether we were on the same team or not -- because we have weathered the storm together.

I can't believe how much I have gained from this workshop. As if the lessons themselves were not reason enough, it wasn't until the next day that I felt the full benefit from the workshop. Going home exhausted, I still managed to cook some spaghetti and homemade meat sauce for Laura, Alex and me. I was too tired to do the dishes until the next morning, but I had the most restful sleep I've had in a long time.

Usually I only sleep about 5-6 hours a night (although I really benefit from an afternoon nap when I can pull one off!) but after the personal growth workshop, I slept for 9 1/2 hours! When I awoke I felt more than refreshed. I felt revived. I awoke with a sense of clarity of purpose that surprised me.

In the week since the workshop much has happened. I wrote to a professor at UT about starting my Ph.D. after Alex goes to college. I am still waiting on a formal response from him. He remembered me and wrote to tell me he wanted to think more about my letter before giving me a formal reply.

What I realized, upon awakening, was that I didn't simply want to work on my business after Alex goes to college. While I love what I've done, and I know that I still need to work on marketing the books, my heart is not in publishing. My heart is in writing, speaking and doing research. I could spend the rest of my life trying to market my books, but that wouldn't make me happy. Helping other parents help their children to communicate better so they can lead a quality life like Alex -- that is what I want to do.

Upon awakening I felt a new sense of urgency to finish revising my HLHS Handbook, work on a new book that has been brewing in my head for the last couple of years and prepare myself adequately to enter a doctoral program when I finish homeschooling Alex.

I wish everyone could experience this once-in-a-lifetime leadership workshop. I think it would benefit everyone. There are so many lessons we could learn from the horses. This is one way for people to gain confidence in their own abilities and to prove to themselves that regardless of age, you can try something new and succeed!

To contact Tim Manson for more information about his workshops, visit his website: http://www.innovativehorizons.com/

Shaun White

2010-02-21T21:07:00.000-08:00

Greetings, Friends! Facebook is a twitter with news about Shaun White! At least the congenital heart defect Facebook community is raving about this inspiring young man. Everyone is talking about "The Flying Tomato" -- an amazing 23-year-old snowboarding sensation.

What most people don't know is that Shaun White was born with a severe, congenital heart defect known as tetralogy of Fallot.

Tetralogy of Fallot was one of the first severe congenital heart defects for doctors to attempt to "fix." Dr. Helen Taussig is known for saving "blue babies" -- babies born with tetralogy of Fallot and other congenital heart defects which result in poor oxygenation, thus causing the babies to look blue. She, like Shaun White, is a hero.

Most people don't know that Dr. Taussig lost her mother at the tender age of 11 and that she suffered from dyslexia. Not only did she overcome her disability, she went on to earn a degree from Radcliff College and eventually earned a medical degree from John Hopkins University -- one of the few universities which accepted women at the time. Taking on an internship in cardiology, Dr. Taussig noticed something that had been missed by other doctors -- some blue babies lived longer than others and she realized why. There is an opening (patent ductus arteriosus) which closes shortly after birth. For some babies, the closing of their PDA was a death sentence. Dr. Taussig realized that if she could somehow keep the PDA open, or create an artificial pathway, blue babies could do better.

In 1941, Dr. Alfred Blalock met Dr. Helen Taussig at Johns Hopkins and she suggested the creation of a PDA. Thus began the collaboration of Blalock and Taussig (and Alfred Blalock's brilliant technician, Vivien Thomas) and a life-saving surgery often called "The Blalock-Taussig Shunt" which is sometimes part of a surgery needed to save children with other heart defects. My son had his B-T shunt when he had his Norwood Procedure, as do many children with hypoplastic left heart syndrome.

Thanks to Dr. Taussig and Dr. Blalock, some people born with broken hearts have a chance to live a normal life. Or in the case of Shaun White, an extraordinary life. I imagine Shaun White doesn't even know that Dr. Helen Taussig had to overcome prejudice against women and her learning disability and that Vivien Thomas had to overcome prejudice against African Americans in order to create the surgical technique that was probably used to save Shaun's life. What he doesn't realize is that just by virtue of the fact that he is competing in the Olympics, he is helping to defeat yet another prejudice -- the belief that if a child is born with a broken heart, he will not have a good quality of life. Shaun White is proof that even if a child is born with a broken heart, he just might go to the Olympics. He just might realize a seemingly impossible dream.

Congratulations, Shaun White! From one American to another, I'm proud you're representing our country in Vancouver. From a congenital heart defect advocate to a CHD survivor -- you're an inspiration and a joy to behold. Thanks to people like you, my son has a shining example of how a person's heart defect doesn't have to define him. I, like the Facebook community I belong to, applaud and honor you.

Baby Hearts Press February Special!

2010-02-07T12:12:00.001-08:00

Greetings! Baby Hearts Press has a special for February - Heart Month. Buy a book and get a free item. See www.babyheartspress.com for more details!

Baby Hearts Press Interns!

2009-11-19T13:12:00.000-08:00

Greetings, Heart Friends! I have some exciting news to report! Baby Hearts Press has two interns!

How did this come about? Vice-President of Marketing, Bob Daigneault, hired a life coach and has had to do various activities to satisfy his personal program. In the course of working toward his life goals, he had to take some tests. One of the tests showed his strengths and weaknesses. This test illustrated for President, Anna Jaworski (me), and Bob that Baby Hearts Press was not fully utilizing Bob's strengths.

Bob Daigneault was a classroom teacher for years before becoming an administrator first in the Killeen Independent School District and later for the San Antonio Northside Independent School District (one of the biggest in our state!). Bob's great strengths deal with helping people to reach their potential by training and guiding them in certain programs.

Together, we realized that we had a great opportunity to share what we've learned about publishing with an intern -- and meanwhile could gain some much-needed help in the areas of publicity and marketing. Bob created a proposal and sent it to Temple College and the University of Mary Hardin Baylor. Within the month, we had a chance to interview Thomas Bradley and we believed that working together would be a win-win situation. Thomas plans to self-publish a book someday and he hopes that by working with us at Baby Hearts Press, he will gain the knowledge he needs to be successful.

I was so excited about having Thomas join us at Baby Hearts Press that I posted a note about it on my Facebook page. To my amazement, Sheri Turner, a long-time friend, "heart" mom and congenital heart defect advocate posted a note stating she wished she could be a Baby Hearts Press intern. I was delighted!

After some discussion and consideration, Baby Hearts Press decided to offer Sheri an internship position as well. There certainly is more than enough work for two people! Sheri is currently working on a graduate degree in business and I'm sure she will be able to share some great information with Baby Hearts Press while she helps us help other heart families like her own.

Baby Hearts Press welcomes Thomas and Sheri to our small family and hopes our association will be a fruitful one!

Orlando Conference

2009-09-10T12:44:00.000-07:00

Greetings, Heart Friends!

Last night was quite exciting for me. I gave the second part of a 3-part speech to my Toastmasters during our regularly scheduled Toastmasters meeting. It was about the need to find balance in our spiritual/religious life after our child is diagnosed with a congenital heart defect.

I have never spoken about this at a conference before. I want to thank Pepper Adair for giving me the chance to talk about this in Orlando. Pepper gave me a theme to work with when she hired me to deliver her keynote address to her audience in Miami, FL two years ago. The theme was on finding or creating balance in your life after your child's heart defect has been diagnosed. The next year (last year), when she asked me to speak to her parents in Panama City Beach, FL, she wanted to use the same theme. When she hired me to speak this year in Orlando, FL, I wasn't surprised when she told me the theme would be the same this year.

For Miami, my speech was largely about chores, normal developmental stages of development in children and how their normal development is enhanced when they are allowed to be contributing partners in a family. I gave suggestions for appropriate chores for different age groups and shared stories about children and their experiences with chores (both my own children and that of my friends). For Panama City Beach, we changed the focus so it wasn't quite so didactic and I had more stories and less "teaching" about normal development, although I still gave the handouts I had created the year before to help parents know what is normal and what isn't so they could address issues at appropriate times.

It has been so much fun to take a theme, create speeches for it and watch those speeches grow, change and blossom. I believe the speech I'm writing for this year's conference is the best one I've written yet. This year I'm focusing on finding/creating balance in 3 essential areas: 1) home, community and social network, 2) work/economic life and 3) spiritual/religious life. Because the economy is the way it is right now, I believe this speech is both timely and pertinent to today's parents. I hope the listeners enjoy hearing the speech as much as I've enjoyed writing it.

My second speech has been cut in time from 45 minutes to 30 minutes. I'll still be talking about Your Child's Bright Future -- just like in the 2 previous years, but this year it will be a little bit different. Pepper has also commissioned for a doctor who specializes in working with ACHDers to give a similar speech from the medical perspective. I can't wait to talk to the doctor who will be giving the medical speech. Pepper is so excited she's agreed to speak to the group. I'm hoping she'll talk to the young adults about the importance of taking their medicines, continuing with their regularly scheduled appointments and taking responsibility for their own healthcare so I don't have to dwell on that. I've already written a speech, but I might modify it after I speak to this doctor.

If any of you readers is going to be in the Orlando area on October 3rd, I hope you'll come to this conference. I think it's going to be very interesting and informative. I'm looking forward to hearing what the other speakers have to say. I'm also looking forward to seeing some old friends (I hope you're coming Bob and Linda!) and to making some new heart friends.

I hope everyone has a great week!

Sincerely,

Anna Jaworski
mom to Joey (18; heart healthy) and Alex (15; HLHS)
author of “Hypoplastic Left Heart Syndrome: A Handbook for Parents” and “My Brother Needs an Operation” and editor of “The Heart of a Mother” and “The Heart of a Father”
www.babyheartspress.com
www.congenitalheartdefects.com

Baby Hearts Press Special & Parent Conference

2009-08-20T13:09:00.000-07:00

Greetings, Friends! It has been an exciting month! Last week all three of my guys celebrated a birthday. That means my oldest son (Joey) is now 18! Alexander, my "heart" son is now 15 and my husband is a year older and wiser, too. :-)

This has been an exciting summer since we released The Heart of a Father: Essays by Men Affected by Congenital Heart Defects. We have had book signings to help spread the news about the book, but now we've decided to offer an Internet special.

In order for people to own a library of resources from Baby Hearts Press, we are currently offering The Heart of a Mother, The Heart of a Father and My Brother Needs an Operation for the low price of $50 for all three! That's a $15 savings and only available at our home website: http://www.babyheartspress.com. You will not find discounts like that available anywhere else. Visit the website for more information.

We have also been working with Pepper Adair (American Heart Association Heart Heroes) on the parent conference for this year in Orlando, Florida. Here are the details:

When? October 3, 2009
Where? Orlando, Florida
What? Parent conference featuring experts in the field of congenital heart defects. This year will feature Anna Jaworski as the keynote speaker and other speakers from the medical community.
How Much Does it Cost? nothing! It's absolutely free, but you must register with Pepper Adair
How? Contact Pepper at heroes@heart.org or call her toll free at 888-255-1060 or if you're in Florida, you can call her directly at 561-697-6619

I'm really looking forward to the conference. Every year I put together a new speech and I've already started writing the keynote speech for this year. I'll be giving the keynote speech, one other speech (they'll have concurrent sessions this year in a variety of rooms) and I'll take part in a panel discussion.

I hope all my Florida friends will come to this event! Pepper and her staff always put on a fun conference. I'm always impressed with how hard the staff works to make it fun for the whole family. There are some whole family activities and then some special activities for the children while the parents listen to the other speakers.

I'll post more information on the conference as it becomes available to me.

The Twig Book Signing

2009-07-27T22:35:00.000-07:00

Last weekend Bob Daigneault (Dad), Frank Jaworski and I drove to San Antonio to do a book signing at The Twig Book Shop. This is an adorable shop on Broadway in San Antonio. It is one of the exclusive bookstores that physically carries our books. Any book store can order The Heart of a Father: Essays by Men Affected by Congenital Heart Defects because it's in Ingram's database, but only a handful of indie bookstores currently carry our books.

Here are Frank and Dad at the table where we did the book signing:

Frank and Bob Daigneault (Dad) at the book signing table

Bob signing a book with Frank and Kevin watching

Several things made this book signing special. Claudia of The Twig really outdid herself by providing refreshments and making us feel welcome.

Refreshment Table & Welcome Sign for MLH and IMH

Mary Adair kindly sent out electronic flyers inviting members of her support group, Mended Little Hearts, to come to the book signing. Heather Collins of It's My Heart also let her members know about our signing.

Here is a photo of Heather's family:

Heather, Coleman and Kevin Collins

It was delightful to see people from the heart community come out in support of the book and us. Here is a photo of Brenda Cabaza (a nurse who works with Dr. Calhoon -- the surgeon who saved Alex's life):

Brenda Cabaza

One of the most wonderful things to happen at the book signing was for Dawn and Wayne Martin to show up! Dawn contributed to The Heart of a Mother and I hadn't seen her since we did a television interview nine years ago! I really enjoyed getting a chance to meet her husband for the first time, too. Here are some photos of us:

Frank, Wayne, Dawn and Anna (me)

Just Dawn and Anna (me)

Christy Lerma of Mended Little Hearts also showed up! It was wonderful to get a chance to meet her and talk to her about her son. Here is a photo of Christy, Dawn and me:

I would like to thank The Twig, all of the members of the heart community who showed up and Mary Adair for helping to make this book signing the success it was.

Book signing of The Heart of a Father: Essays by Men Affected by Congenital Heart Defects

2009-07-09T08:12:00.001-07:00

Book signing of "The Heart of a Father"
by Anna Jaworski, Bob Daigneault and Frank Jaworski

The Twig Book Shop
Saturday, July 18th 1:00 - 3:00 p.m.
5005 Broadway St.
San Antonio, TX 78209-5793

Best Book Signing Ever!

2009-07-06T07:59:00.000-07:00

Dear Friends:

I had the best book signing ever on July 3rd at Hill Country Bookstore in Georgetown. I've been doing book signings for many years now, so I have plenty of experiences for comparison! Let me tell you about why it was the best book signing ever . . .

First of all, the signing took place in the most darling bookstore you'd ever want to step inside. The bookstore in the movie "You've Got Mail" reminds me of this bookstore. But the one in "You've Got Mail" was in a big city. Hill Country Bookstore looks like it belongs in Mayberry, RFD, not a big city. :-) It's on the square in downtown Georgetown. Here are a couple of photos of the bookstore from the outside.

On the first Friday of every month, downtown Georgetown stays open a little later. Not every store stays open late, but the ones that do have signs on their doors or marquees that say "First Friday Participant." Some of the roads are blocked and a tent is set up. Musicians arrive and so do a lot of people. They set up lawn chairs under the trees, or claim one of the many benches available on the square. Some come with their dancing shoes on (this mainly means "boots" in Texas). Some visit a sweet bookstore named Hill Country Bookstore. At 8:00 the live music begins and there is dancing in the streets.

My book signing was scheduled for July 3rd -- the first Friday in July. I had no idea how much fun it would be to see everyone getting ready to have a good time! And little did I know that Margueritte (Hill Country Bookstore's owner) intended not to be outdone by the musicians outside!

Our book signing was scheduled from 6:00-8:00 p.m. When I arrived, to my delight, I saw a little blackboard outside the bookstore welcoming me and Poetic License. We were going to have a signing and live music!

Once inside the bookstore, I had a chance to chat briefly with Margueritte, the store's owner for the last 14 years. She made my father and me feel completely welcome and at ease. She set up a little table for us with two chairs comfortably close to the check-out area and in full view of the beautiful window facing the front of the store and people preparing for the festivities. We also had a perfect view of Poetic License!

I think what made this a perfect book signing is the fact that people who enjoy First Friday events are either locals or out-of-towners who heard about Georgetown from friends or family and who choose to come downtown to enjoy the festivities. These are people who want to meet other people and have a good time. Couple all of that with a welcoming bookstore owner who knows most of her customers by name, and who supports local artists such as Poetic License, and you're bound to have a great time.

(Dad and me at Hill Country Bookstore)

(Poetic License: Martha Pinto and Lissie Connolly)

So the set up was ideal. Beautiful bookstore, fun and welcoming people, live music . . . what more could you ask for? How about generous, warm and friendly customers?

Frequently at book signings, I feel that the customers wish I wasn't there. :-( I know that may sound mean to say, and I don't wish to be mean, but what I'm saying is that frequently customers don't know what to do when they see an author sitting at a table. It's so interesting to see how people respond! At two of the recent signings we had, the bookstore managers put us at the front of the store to be greeters. We were happy to do this, so we were surprised when people did everything they could not to be greeted! We weren't yelling, "Please buy our books." We were saying, "Hi! How are you?" and if people acted interested, then we'd tell them about our books. Many people would come in the store and duck their heads to avoid eye contact when we tried to greet them. This was disheartening. We knew we wouldn't sell tons of books; mostly we have signings just to get the word out, hoping that if someone has a child with a heart defect, or knows someone with a heart defect, they'll find our resources helpful.

At Hill Country Bookstore, you could tell that these customers knew how to talk to authors. They weren't afraid of us. They were happy to see us, to talk to us, and some even chose to buy our books! A number of people came over to us to tell us about a mother in Georgetown whose son had a heart transplant. She's a local celebrity because she has become an extremely strong advocate and has helped purchase AEDs (automatic external defibrillators) for local schools. In fact, as legend has it, one of the AEDs in the middle school was used to save a student's life! I was told over and over again that I need to meet Teri Lucas. This is something I hope to do in the near future.

At one point, some newly married friends showed up and I moved from behind my table to speak with them and give them a hug. They purchased a book and Dad and I autographed it for them. We chatted a few more minutes and when they left, I noticed two new things on our table. One thing was a tri-fold brochure for a local restaurant down the street. The other thing was a little napkin with two chocolate truffles on it! Just for me! Dad has his own little napkin with two truffles on it! The restaurant proprietor of Silver and Stone had quietly put the brochures and the truffles on the table while we were talking and left before I could thank her!

(Thank you for the truffles! I can't wait to take my husband to your restaurant some day!)

Martha and Lissie made beautiful music. They sang with acoustic guitars. They sang accompanied by a tambourine and some other gentle percussion instruments. Then they sang a capello. One little boy was captivated by their singing and I caught a photo of him.

The two hours flew. We met wonderful people, enjoyed beautiful music, ate delectable truffles and even spread the word that you don't have to feel alone if you have a child with a congenital heart defect. I didn't want this magical book signing to end! I came away feeling inspired, relaxed and happy.

We're scheduled to do a book signing at The Twig Book Shop on Broadway in San Antonio on July 18th. I am very excited about that signing because I've already been in touch with a lady who runs a support group in San Antonio and I'm hoping to meet some heart families. We'll be reading from our books and sharing stories. I hope I have cause to write about another perfect book signing after that.

July 18, 2009 book signing and reading by Frank Jaworski, Bob Daigneault and Anna Jaworski from 1-3 o'clock.

The Heart of a Father Update

2009-06-27T08:37:00.000-07:00

Dear Friends:

I still can't believe it's done. :-) There were so many times I wondered if I'd ever be able to complete The Heart of a Father. I was so picky! I could have finished it dozens of times, but it never felt right. It seemed to be lacking something. So I held on and held off on publishing it.

I'm so glad I did.

Now it feels right! It looks right! It IS right! :-) Thanks, Dad! Without Dad, I'd still be wondering if I will ever finish the book! He was the key ingredient to me finding a way to finish the book.

I've been receiving emails from contributors and readers who are very happy with the book. It's not an easy read. Neither was The Heart of a Mother. These books are not books read for pleasure. They're read for comfort, for education and for inspiration, but not for pleasure. Reliving the times in the hospital or difficult times in our marriages due to the stress of dealing with a sick child on top of everything else -- those things aren't easy to read. But the most amazing thing happens when I write about my experiences or read the experiences of others. I feel a kinship, a connection, that I don't feel with anyone else. Instead of feeling isolated and bereft, I realize I belong to a very special group of warriors. This sense of belonging makes me stronger. It makes me actually feel capable.

Ironically, when I was in that situation (at the hospital mainly), I felt anything but capable. When Alex was in the hospital, I felt like a zombie. I couldn't remember anything. I felt so useless and ineffective. It was awful! That's why I couldn't wait until the catheter was taken out and I could change diapers, when the wounds healed enough that I could bathe Alex and when he was off the ventilator and I could feed my baby. Until I could be the hands-on mom I was used to being, I was a wreck. I hated for anyone to ask me how I was doing. I was fine as long as no one asked me that. I had a mask of composure that I was able to wear, but for some reason, when someone said, "Wow! You really seem to be holding up well!" or "How are you doing?" That's when the mask would slip and the tears would fill my eyes. I wasn't doing well; I was in agony. My baby was sick and I felt powerless to do anything about it.

Most days, I don't even think about those times. I'm raising a teenager. Oh yeah, he was born with a heart defect. Alex's heart defect is always there and I'm the mom who asks if meds have been taken and teeth brushed everyday, but I don't stress over Alex's heart defect anymore. I wondered, when we were in the throes of dealing with his condition, if I would ever have a morning where I didn't wake up and rush to his bedside afraid he might not be with me anymore. Would I ever go to sleep without thanking God for having one more day with my children and without tears accompanying my dreams?

The answer to both questions is "yes." I've had many days where I hardly think about Alex's heart defect. We're too busy with swim meets, robotic tournaments, Boy Scouts, Tae Kwon Do, art lessons, piano lessons. Yes. There were days that I just tumbled into bed too exhausted to worry about Alex. Too happy to let those thoughts infiltrate my mind. The days have come and I hope there will be many more.

The book is done. :-) Dads now have a say! Dads now have a voice! :-) The moms have told their stories and the dads have told their stories. Some of the men who wrote are husbands to the women who wrote for The Heart of a Mother, so some readers will have a chance to see how the children they read about are doing 10 years later. That was exciting for me. To watch these young heart heroes grow up and realize their potential. Wow. Those stories empower me. They give me hope that Alex will beat the odds and grow up to live a full life, too. I think all of us heart parents need that thread of hope.

We've done three book signings -- one in Austin, Waco and Killeen, Texas. We have two more scheduled for July -- one in Georgetown and one in San Antonio. If anyone else would like a book signing, please let me know. We've had two television interviews -- one with Dad and me in Austin and one with Jess McCain in Sacramento. Dad did an interview for the radio in Austin. A wonderful newspaper article has been written about David Nowell. It's been a busy time.

For the latest updates and links to television interviews and newspaper articles, check out our websites: www.heartfather.com or www.babyheartspress.com.

Have a great day!

Anna

Preparing Postcards!

2009-06-25T19:10:00.001-07:00

I'm preparing postcards to announce the release of my latest book and to invite people to the San Antonio book signing which will take place in July. If you, or someone you know, would like to be invited to the San Antonio book signing, please let me know!

Sincerely,

Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS)
www.babyheartspress.com -- resources for the CHD community
www.congenitalheartdefects.com -- the Best site on the Internet for CHD information
www.centexacademy.com -- information about Alex's robotics team
author of "Hypoplastic Left Heart Syndrome: A Handbook for Parents" and
"My Brother Needs an Operation" and editor of "The Heart of a Mother"
and "The Heart of a Father" (publication date: June 15, 2009!)

My Toastmasters Meeting

2009-06-25T07:36:00.001-07:00

My Toastmasters meeting went well last night! We celebrated our 5th anniversary as a club. I gave a toast and Bob Daigneault (my dad) gave his 10th speech in his Communication and Leadership manual qualifying him to be a Competent Communicator! Katie Thieme also gave a speech. Frank Jaworski did Table Topics and we all had a great time. Instead of our typical venue, we met at Luigi's, our favorite Italian restaurant in Belton, Texas.

Here is a photo of Dad, after he gave his speech.

Dad's speech was on Power Aging and it was terrific! I heard so many people saying they wanted to know more. Several people even told Dad that he needed to give another speech on that subject. Dad's passion and knowledge came through, but more than that -- Dad is a living example of how to power age! At almost 70 years of age, there's just no stopping him!

I can't wait to see what Dad's next speech will be about. I hope that others feel as inspired when they hear me talk as I feel when I hear Dad speak. He's a great role model!

Sincerely,

Anna

Fathers' Day

2009-06-21T09:44:00.001-07:00

Dear Friends:

I am preparing to spend this day with the two most important fathers in my life -- my husband, Frank, and my dad, Bob Daigneault.

Today will be the third book signing in a row for us! Friday night we did one in Austin, Texas at BookPeople. What a terrific venue! We were on the second floor, had a stage, a sound system, and chairs for people to sit in while Dad and Frank read from the book. It was probably the nicest set up for a book signing I've ever had.

Here is Dad at the lectern.

Here is Frank reading from the book.

Saturday we had a book a book signing in Killeen, Texas. They put us in the front of the store, as greeters. This is an uncomfortable position for me to be in. I'm amazed at how many people will walk in the door and do everything they possibly can to avoid looking at the greeter! Still, Killeen has some advantages for us. I graduated from high school in Killeen and my dad taught in Killeen for years and then was an administrator there. Surprisingly enough, after graduating from college, my first job as a teacher was at my rival high school in Killeen, Texas. :-) We also have some family there (my sister-in-law, Susan) and friends nearby.

This signing was so much more fun because some friends and family took the time to stop by. I don't know if people realize how much that means to an author! Thanks Susan, Rachel, Nicky, Janet, John, Lynn, Roy, and Noah! Here's a photo of some of my dear high school friends and us.

(back, l-r) Roy Martin, Dad (Bob Daigneault), Frank Jaworski

(front, l-r) me (Anna Jaworski) and Lynn Mayo

We're starting out the day by having a Fathers' Day lunch at our favorite Italian restaurant in Belton, Luigi's. Then it's on to the book signing in Waco!

Sincerely,

Anna

First "The Heart of a Father" Book Signing!

2009-06-19T14:51:00.001-07:00

I'm about to leave for a book signing in Austin, Texas at BookPeople!

Bob Daigneault (co-editor and contributor), Frank Jaworski (contributor) and Anna Jaworski (co-editor) will be at BookPeople at 7 p.m. tonight to read from their newest book, "The Heart of a Father." They will read selected excerpts and be on hand to autograph copies of this book and Anna Jaworski's other books, "The Heart of a Mother" and "My Brother Needs an Operation."

Sending out books!

2009-06-11T10:22:00.001-07:00

Dear Friends:

I'm sending out books! It's exciting to be sending complimentary copies of The Heart of a Father to the contributors of the book. We now have reviews on B & N and Amazon! :-)

Sincerely,

Anna Jaworski

The Heart of a Father

2009-06-03T08:27:00.001-07:00

The Heart of a Father is being printed! I just spoke to my Credit Representative from Lightning Source, Inc. and she informed me that all but one box of books has been printed! That means that no later than tomorrow, all the books should be shipped to me. I can't wait to get them!

Press Releases

2009-05-27T14:41:00.001-07:00

Press Releases This is exciting! I just finished putting together the first draft of a press release to send out to local media for Bob Daigneault and Frank Jaworski. I am hoping our local newspaper will want to do a story about the book coming out and Frank and Bob's role in making the book a reality. There really is an amazing human interest story surrounding this book.

Test

2009-05-26T10:53:00.001-07:00

I'm testing out whether Hellotxt will send this message to all of my social networks. I hope it works! It's a great way for everything to get updated at once! Let's see if it works.

Literary Festival

2009-05-16T07:22:00.000-07:00

Yesterday Alexander and I attended a Literary Festival at Harmony School in Pflugerville, Texas. Lora Negrito had invited members of the Writer's League of Texas to attend and she was delighted when I responded, especially since I told her that Alex is also a published writer. She had tables for each of us.

Here is Alex's table:

We had the Highlights for Children and Disney Magazines that Alex had been published in to show the children that there are opportunities for children to publish, too. We forgot to bring Alex newspaper articles! Alex really wished he had brought the first few chapters of his book, too. He actually had two students very interested in his story line. He has some students who are going to check out his www.fanfiction chapters. He doesn't use his real name on the Fan Fiction site, so he had to tell the boys the name to look for to find his stories.

Here I am at my table:

It was really great that I had the galley/proof of The Heart of a Father. You can see it here next to The Heart of a Mother. The cover is really quite striking. Of course, the book the kids were most interested in was My Brother Needs an Operation. I had fun telling them the story of how K.C., my toy poodle, had managed to get in so many photographs, that Linda Ball (the illustrator) decided to work her into the story line.

As much as I enjoyed talking to the students -- and 4 or 5 of them had siblings with CHDs! -- I think I enjoyed even more seeing Alex talk with the students about his writing projects and achievements.

The school has about 150 students. They had the students come to us by grade (6th - 9th) a little at a time. There were several other authors' tables not visible in this photograph which is why it doesn't look like there are many people here. There were. The children split up and spoke to all of the different authors in the different sections of this room. Unfortunately, the photos of the other authors I took came out way too dark for me to post.

I think one of the things that I got the biggest kick out of was watching some of the students ask Alex for his autograph.

We had lunch with the main speaker for the Literary Festival, Maria Snyder, author of Poison Study, Magic Study, Fire Study, Storm Glass, and (soon to be released) Sea Glass. Unfortunately, the photo I took of Maria Snyder came out too dark. :-( She was extremely personable and very kind to both Alex and me. In fact, she impressed Alex enough with her presentation and luncheon discussion for him to get an autographed copy of her very first book (Poison Study).

Here's a photo of her that I found online:

We had a great time! Thank you to the Harmony School for inviting Alex and me to their Literary Festival and thanks to all the kind people we met yesterday. It really was a most enjoyable day.

The Heart of a Father Galley Received!

2009-05-14T21:36:00.000-07:00

I am thrilled to announce that today I received the galley (proof) of The Heart of a Father. It looks even better than I thought it would! It looks and feels very much like The Heart of a Mother. I was a little afraid it would be quite different since I am using a different printer, but I'm delighted with the way it has turned out.

The book will be available June 15th. The book can be pre-ordered on the Baby Hearts Press website (www.babyheartspress.com).

Thanks to all of you who supported me through the years it took to make this project a reality.

Sincerely,

Anna Jaworski

The Heart of a Father -- Latest Update

2009-04-30T16:02:00.000-07:00

Friends:

I am so excited to announce that The Heart of a Father is almost ready to send to the printer. The ISBN has been assigned, as has the Preassigned Control Number for the Library of Congress. All of the paperwork with the printing company has been filled out, signed and received. The book has been edited multiple times and changes suggested by our Advanced Readers have been taken into consideration. The book has been sent to 20 Advanced Readers and almost half returned their surveys and gave me plenty of material to choose from to create the back cover of the book. Speaking of the cover . . . Sue Dove, designer extraordinaire, has done a wonderful job putting the covers of the book together. She has even been extremely patient with me as I've asked her to make certain changes and adjustments only to discover that we had to start all over with our printer's cover template! It worked out fine, and our first attempts just made everything else come together more smoothly.

After over seven years of contacting men about the book, it's finally ready to go to the printer. So many times I was embarrassed to look at the Baby Hearts Press homepage where we had a book with The Heart of a Father on the cover and the words "coming soon!" next to it. I remember thinking that "soon" was certainly a relative term!

Now that the time is upon us, I feel such a sense of peace. I didn't want to publish the book without having certain essays and I held out until I received the kind of essays I wanted. I wish I would have had more submissions by fathers of children with less severe CHDs, but I guess those fathers don't feel the same urgency to contribute to a book like The Heart of a Father that the actual contributors felt. After receiving communication from over 120 men who stated an interest in contributing to the book, only 50 followed through and sent me something to work with. But what a rich array of stories I received! It has been an honor and a joy to work with these 50 contributors and to act as their Developmental Editor, Copy Editor and Line Editor. All along the editing process I grew to understand these men's stories better and became better able to help them tell their stories to others. It's been quite an enriching process.

I've also been with some of these contributors for over 7 years -- especially husbands of wives who contributed to The Heart of a Mother. Through our correspondence we've shared news of marriages, graduations, births and deaths. I feel I can honestly call many of these people my dear friends. Some of us have had the good fortune to meet face to face. I've talked to almost all of them on the telephone. I used a relay service to communicate with our one deaf contributor. I believe we've probably shared more of ourselves -- our feelings, fears and experiences -- with each other than we have with just about anyone else. We understand each other in a special way since we're all members of the heart community. We rejoice in each other's triumphs and weep at each other's tribulations.

I hope that all of the readers of this special book glean the same sense of community, sense of belonging and understanding that I have come to appreciate by working with these remarkable men. I hope that all of you who choose to read this book better understand the unique challenges facing fathers of children with congenital heart defects, grandfathers or men born with congenital heart defects. Each group has a unique set of challenges. Each of these groups of men has a special chapter dedicated to their experiences. There are even two unique chapters for bereaved dads -- one for dads who have lost a baby or young child and another chapter for fathers who have lost an adult child born with a congenital heart defect. We have so many lessons we can learn from these fathers.

Thanks to all of you who have been patient with me over the last many years. Thank you for believing in me. So many of you sent letters of support, notes of encouragement and words of praise for my other books. Those kind deeds kept me energized and motivated to complete this project.

Special thanks, most of all, to the two men in my life who not only contributed to this book, but who also made its birth possible by helping me in so many ways. Thank you Frank Jaworski, my husband, father of my children and life helpmate. Without you, I would never have made it this far. Without you I would not have had the confidence that I could do this. Thank you, Daddy. Without Bob Daigneault, my father, and grandfather to my heart child, this book would still be on the back burner. It took us over a year of hard work, Daddy, but we finished it. In the midst of working to complete this book, we lost Florina Jordan, my grandmother (Daddy's mother). That tragedy set the book's calendar off track, but I think it was Divine Intervention. Had we not been set back a year, we never would have met the Greg Myers, Steve Catoe, Max Gerber, Gary Tucker or Kevin Kilkeary, Jr. The book is much richer for the detour we took working to finish the book.

I couldn't end this update without singing the praises of Sue Dove. Sue has been my CHD partner for about nine years! She has been my webmistress, my confidante, my idea lady. Whenever I've needed a colorful handout -- I've sent the boring text to Sue and she's waved her magic wand over it and madesit marvelous! When I wanted a new pin for our new website, she created it. When I needed someone to help with the interior book design, I researched my options -- local and across the Internet. Then I wised up and realized I already knew the best designer for the project! When Sue agreed to help create the interior design of the book and the covers, I knew the project would be done right. She hasn't let me down. If anything, our combined vision has been much greater than what either of us would have created alone. It didn't hurt that Ian Berry sent us a fabulous photo to use on the front cover. It made me go "Wow!" when I saw it. It's a pity we had to put identifying information on the cover because with just the photo and the title, it was breathtaking. It's still a cover to be proud of -- thanks to the combined effort of many helping hands and hearts.

So there you have it, my friends. We have been on a long journey together and we're about to send the fruit of our labors off to the printer. This isn't the end of our journey. We've just come to a fork in the road. Before we know it, we'll be holding fresh, off-the-press books and presenting them at booksignings, talking about them at conferences and sharing them with everyone we know. Thanks to the permanence of the printed word, these stories will become legend. They will last for generations. The lessons we learned will be shared with other heart families. We can ease the loneliness and fear associated with the phrase "congenital heart defects." We can replace those feelings with a sense of belonging, with true appreciation for what we do have and with a grateful heart for every day, every moment, every breath our loved ones take.

Life is good.

Catching Up

2009-04-23T04:59:00.001-07:00

Dear Friends:

It's been a crazy month since I last wrote on the blog. So much has happened! First, the book -- I cannot begin to say how excited I am about the book. It took forever to finish the back matter -- the Index, Glossary (that was really a bear because I did it for the printed book and the eBook which meant finding good websites to send readers to for more information) and the Bibliography. Since I made such an extensive Glossary, the Bibliography had to be extensive, too. I'm so happy it's done, although I know most people don't bother reading the front or back matter of the book.

Review copies have been printed and mailed or emailed to almost 20 reviewers. I've already received some of the Advanced Reader surveys and I'm delighted to see that people really like the book, but more importantly, they find it valuable. I knew that fathers had a valuable and unique story to share, but it's good to hear from others that they regarded the essays special, too.

I'm still waiting on more Advanced Reader Surveys in order to complete the back cover of the book. Otherwise, the only 2 things I need to completely finish the book are my Catatogue-in-Print information and the Colophon. I've never had a Colophon in a book before, but I wish I had! If I had put that in the back of The Heart of a Mother, I wouldn't be trying to remember exactly what quality of paper I had used, what fonts I had used, etc. like I am now. It doesn't look like it's going to be possible for me to make The Heart of a Father look quite like The Heart of a Mother. Now I'm seeing there are certain obstacles that are making the last decision I have to make even more difficult.

When I printed The Heart of a Mother I wanted it to be keepsake quality. I chose a special Japanese paper that would not turn yellow over time and that would display the photos in the book optimally. I chose to have the book scored -- you can see an indentation all the way down the book so that the covers don't curl up with the heat (really important since I live in Texas!) and so it lays flat. I've decided this time around to be a more "green" publisher. Instead of printing 5000 copies of the book, I am only doing a short run of about 1000 books and then making it available via Print-on-Demand. Print-on-Demand printing is "green" but it's not fine printing like off-set printing is and doesn't seem to offer quite as many niceties.

Then there's the price to consider. When you print 5000 books, the price per book is much less than when you print 1000 even if you have nicer paper and binding techniques. So how do I be "green" and reduce the amount of stock to carry while still having the quality of book people have come to associate with Baby Hearts Press? That's the dilemma I find myself facing right now.

But more than that, I would like to make my books more available than they are right now. Right now I'm only on Amazon.com and some other online bookstores and selling books through my website. I'm afraid it's time to go back to Ingram so that my books can be available to bookstores. My experience with Ingram in the past was less than ideal and I'm hesitant to jump into a relationship with them, yet Lightning Source seems like a good option for the printing of the books.

I'm really impressed with what I've seen about BookMasters and last night my dad sent me a link to a publishing company I've never heard of before called Outskirts Press. Their website is interesting. I like the fact that they (really all 3 of the aforementioned companies) allow you (the author, or in my case, the editor) to retain all rights to the work. I also like the fact that I can use my own ISBN instead of having to use theirs (which is not the case with so many other companies out there). And it looks like Outskirts Press helps with marketing -- which is my greatest weakness. But I've really taken steps to work on that by having my dad come on board as Vice President of PR and by hiring a publicist. So I am hopeful we will be able to successfully launch The Heart of a Father to great fanfare. :-)

Other news:

Alexander's robotics team, the X-Bots, were invited to attend the FIRST LEGO League World Festival in Atlanta, Georgia! Last week our team was in the Georgia Dome and the Georgia World Congress Center. Opening Ceremonies were in Centennial Park. It was an amazing experience and quite humbling. There were teams from 27 countries and most states were also represented. In all, there were 84 teams from around the world at the competition.

Joey's One-Act Play (Anna Karenina) continues to advance. Tomorrow he will be at Baylor University for the Regional UIL competition. It's been exciting to watch his play over time. It gets better and better as people help to improve the play.

That's all for now!

The Heart of a Father & Groundbreaking Legislation

2009-03-22T06:30:00.001-07:00

Dear Heart Readers:

At one point, I really wondered if The Heart of a Father would ever be completed. I despaired of getting the essays I felt were necessary for the book to satisfy the vision I had for it. Today, I shake my head in disbelief. The book is turning out even better than I originally envisioned.

Just when I thought I was done editing every single essay for the book and had turned my attention to the front matter of the book, a dear friend and heart mom, Michelle Rintamaki, forwarded a posting from an adult with a congenital heart defect which was posted on her listserv. It was so good, I had to contact the gentleman to see if he would let me put it in the book. He not only agreed for me to reprint his posting, he sent me another posting for consideration, too! Thus, Steve Catoe's essay, "Who Are We?" will be the lead essay in the Adults with Congenital Heart Defects chapter and his other posting is now a poem which will be the epigraph for the book. I hadn't even planned on having an epigraph! But his beautiful words in "The Heroes We Forget About" made me feel the need to have a poem set the tone of the book. The epigraph is the verso page of the Dedication.

Sue Dove is doing a fabulous job with the book. With a request from me, she changed the cover of the book and now it's even more striking. She has also put all of the essays in the correct format and she has taken the front matter I gave her and put that into the book. The "book" still needs a bit of tweaking, but it is now taking its final form and is allowing me to begin the blueline editing and construction of the Index and Glossary.

Overall I am very pleased with the progress we are making on the book. My goal is to have the pre-publication version of the book available for distribution on April 1st. This time, the draft will be an eBook to speed up the time needed to get it to the reviewers and to reduce the cost of printing and shipping the book. The pre-publication version will be representative of the printed book. Once this book is finished, we will create the eBook and Kindle versions of the book. Although I have already created my wish list of reviewers for The Heart of a Father, if anyone is interested in reviewing the book and taking a survey to help us before the actual publication of the book, please send me an email at jaworski@vvm.com with your credentials for reviewing the book (heart parent, professional working in the heart community or adult with a congenital heart defect).

Now for even more exciting news!

Last week we saw history in the making due to new legislation being introduced to the United States Congress regarding the need for more attention and funding for the congenital heart defect community (CHD). The "Congenital Heart Futures Act" was introduced by Senator Richard Durbin (D-IL) and Congressman Zack Space (D-OH).

One of the most exciting aspects of this legislation is not only the recognition of CHDs as the most common birth defect, but that they were able to bring together representatives from so many sectors of the CHD community. The effort was spearheaded by the following organizations: The Children's Heart Foundation, the Adult Congenital Heart Association, Congenital Heart Information Network, It's My Heart and Mended Little Hearts support groups. This effort united organizations that support the National Congenital Heart Coalition in an effort to persuade senators and representatives to fund important initiatives surrounding CHDs. The effort was also supported by the American College of Cardiology.

For even more information about this initiative, check out ACHA member, Steve Catoe's blog: http://tricuspid.wordpress.com/2009/03/19/text-of-the-congenital-heart-futures-act/

When my son's heart defect was diagnosed fourteen years ago, there was little published information available. Sadly, much of what was written about hypoplastic left heart syndrome regarded only a dismal prognosis at best. Today we are publishing books about hope and the inspirational lives our heart heroes are leading and our country is finally recognizing the need for more funding, support and recognition of this, the most prevalent birth defect in the United States. There is more hope today than ever before.

Book Progress and Alexander

2009-03-10T20:35:00.000-07:00

I am happy to announce that I have finished with the first round of line editing the entire first rough draft of The Heart of a Father. Dad has finished the second round of editing on the first two-thirds of the book! And Sue is right on top of things. She has already completed most of the interior design work on that first two-thirds of the book.

Although the progress on the book is quite exciting to see, something else very exciting has been happening in my life.

My son, Alexander, is the reason Baby Hearts Press exists. Alexander was born in 1994 with hypoplastic left heart syndrome (HLHS) and it was not expected he would survive his first surgery, but he beat the odds. Then he beat the odds by surviving the Fontan surgery. Then again when he reached age five.

Now Alexander has beat the odds once again. His robotic team has made it all the way to the international competition! This is Alex's sixth year to compete, but first year to make it to the FLL World Festival.

Our team needs your support. To read more about the team, please visit our website: http://www.centexacademy.com

Our heart children are amazing. Some of them not only survive against amazing odds, some of them go on to accomplish great things. You'll read about that on our robotics website. You'll read about that in The Heart of a Father. What is amazing to me is having the chance to witness this greatness firsthand. If you want to be a part of the support for Alexander's robotics team, please visit our website and give a donation. No donation is too small. If you want to sponsor the team, we'll put your organization or company's logo on our new shirts.

Thank you for your time and consideration. As my friends Greg and Rikki would say, "Always Believe!"

Heart of a Father Progress

2009-02-18T09:11:00.000-08:00

I am so excited to announce that I am halfway through the line editing of the book! I have met my goal of cutting at least 10% and the book is much tighter and more succinct. My interior graphics artist is working on the first two chapters. I have already scheduled an appointment with my Vice President of Marketing, publicist Phil West and me to put together a marketing plan for the book. Everything seems to be moving so fast now!

Going through the book has brought back so many memories. I've known some of these contributors for many years and we've seen each other through some major life events. It's hard reliving some of the difficult times and inspiring reliving triumphant events. I find myself emotionally spent at the end of a day of editing. It is difficult sometimes to cut a single word or change a phrase when I know how much these essays mean to the contributors. I only pray that God is guiding me through this process to help illuminate the stories these gentlemen have been willing to share with the world. This is a most humbling experience for me. I feel a weight right now that I hope will be lifted when the book is completed and (hopefully) well received.

To all of you parents out there who feel you are alone in dealing with life raising a child with a congenital heart defect, please know you are in very good company. The Heart of a Mother and soon The Heart of a Father are two resources that will help you see you are not alone. The experience of raising a child with a heart defect is shared across religious, socio-economic, racial and physical boundaries. Regardless of the native language spoken, we CHD parents speak a common language. We know meanings of abbreviations like HLHS, SATs, EKG, ToF and more. We have all experienced hearing words from doctors and technicians that no parent should ever have to hear. We've all spent countless hours waiting for our children to return to our loving arms after surgery. These books help to illustrate the fact that we are not alone.

I hope all of you have a wonderful day and look forward to reading The Heart of a Father as much as I've enjoyed bringing it to you.

The Heart of a Father -- First Draft Complete!

2009-01-27T18:20:00.000-08:00

Dear Heart Friends:

I have just returned from Staples where I printed and bound copies of the first draft of the book for my co-editor and for Dr. Fedderly, who will write the Foreword for the book. It's 200 pages without any clip art or photos. So one of my first jobs with the line editing is to cut, cut, cut. Michelle Jestice and I cut The Heart of a Mother by at least 10% twice before we were done. I think if I cut HOF by 10%, that will be a good start. I'm not sure I want to cut it by 10% twice. The Heart of a Mother was over 400 pages when I realized that I had to cut, cut, cut.

I have really had fun this week with finishing up my phone calls to the contributors. I still have 6 or 7 calls to make. It has been so much fun putting a voice to the essay. Or in one case, putting someone else's voice to the essay -- since one of our contributors is deaf and I had to use a special relay service to communicate with him. I am hoping that this contributor will sign his essay so we can make it available to other deaf readers in ASL. As a former teacher of the deaf, this is something very special to me -- I'll certainly be letting all my deaf friends know about it!

I appreciate those of you who left a note that you want a copy of the book. I know you won't be disappointed. These gentlemen have really shared some special stories, advice and wisdom. I only hope that my editing and organization does them justice.

The Heart of a Father - Publication Date Set!

2009-01-14T09:19:00.000-08:00

Greetings, friends! I have some very exciting news to report regarding The Heart of a Father. I finally received all of the essays I have been waiting for! We are still in the process of editing the essays, but now the book has all of the material I feel it needed to be complete. It feels good to finally be at this point.

I have set Fathers Day 2009 as our publication date. We need time to get the book to the printer, to receive it and then send it out to reviewers. We still need to create the back cover -- which will depend up quotes from the reviews we get from early readers. We are hoping to receive some pre-publication publicity and book reviews in magazines and newspapers. Sometimes it feels like putting the book together was a piece of cake compared to the tasks we have before us -- and we aren't quite done putting the book together yet!

I am excited that we have agreed upon the front cover and that I have hired an interior designer to help with inserting art and photos in the book. I really needed extra help putting this book together. I did almost everything myself with The Heart of a Mother (except for hiring an excellent editor to work with me -- Michelle Jestice), and it was extremely time-consuming. With all of the other things I'm involved in now (robotics coach, swim official, having a senior in high school and taking Alex to college 5 days a week), I'm afraid it would take me over a year to get everything together. With the help of my dad and Sue, my interior designer, I am hopeful we'll get the book to the printer in a much more timely manner.

Once we send the book to the printer, Sue will post a pre-order form on the website. I am eager to see who wants to order the book. I am hopeful the heart community will welcome this new resource which shares so many heartfelt stories, expert advice and downright insightful experiences of men from around the world.

The Heart of a Father

2008-11-07T07:46:00.000-08:00

Over eight years ago I envisioned a book by men affected by congenital heart defects that would be a companion to The Heart of a Mother. I started with a handful of essays from men I had come to know over time, some had wives who had contributed to The Heart of a Mother, others were simply concerned fathers or grandfathers who found Baby Hearts Press and me. Now, finally, I believe we are coming close to finishing this project.

I have thought in the past that we were close and always something seemed to get in the way. This time last year I thought we would have the book out by Christmas. Then my grandmother fell ill, moved in with my father, got better, made it to my cousin's wedding, became sick again and then passed away in February. It has been a very difficult year for me. This Thanksgiving will be the first Thanksgiving in 8 years where Grandma isn't eating dinner at my house. My only consolation is knowing that she will be with us in spirit and that having my sister and her family, my family and my father present will kind of be a tribute to her. If it weren't for Grandma, none of us would be here. :-)

Dad is working very hard on the book with me since both of us are eager to complete this awesome project. We're still waiting on 3 essays but now I feel certain they will come. I have to believe they will finally be completed because I don't want to publish this book without them.

So that is where we are now. All but three chapters are completed. We have authors lined up to write the Introduction, the Preface and the Foreword. It's been fun reconnecting with the authors, sharing our progress with them and getting some updates. Our children are so beautiful and inspirational. The stories we have to share are going to help others in the CHD community. I only hope that Dad and I have done justice to the words these brave men have shared with us and kept their voice their own. One of my ultimate goals with the books I publish is to keep it real.

I was once interviewed by a reporter for Woman's World. I told her she could publish my story provided I got to okay the final version of the article. She had "Hollywood"ized my story creating a false history of what really happened. I wouldn't allow it to be published and I wondered how many of the stories I saw in the supermarket were distorted like she tried to distort mine. Our stories have enough drama in them. We don't need editors who are going to change what really happened just to sell more books or magazines.

These stories are written by real men. They may not be professional writers by trade, but they have opened up their hearts to share some of the most difficult moments of their lives -- or maybe some of the best moments of their lives. The book covers the gamut -- from births to celebrations of life to descriptions of the unthinkable -- losing a child. I look forward to sharing them with you all soon.

Sincerely,

Anna Jaworski
mom to Joey (17; heart healthy) and Alex (14; HLHS); wife to Frank
author of Hypoplastic Left Heart Syndrome: A Handbook for Parents and My Brother Needs an Operation
editor and contributor to The Heart of a Mother
co-editor of The Heart of a Father (in progress)
www.babyheartspress.com
www.congenitalheartdefects.com

AHA Heart Heroes Conference -- Panama City, Florida

2008-10-21T17:33:00.000-07:00

Here is a photo of my father and me at the American Heart Association Heart Heroes Conference in beautiful Panama City Beach, Florida. Professional photographer Jordan Owens was on hand to take photos of all of the families. What a treat!

The conference was fantastic. I had a chance to see some former AHA members (Pauline and Gary) and Alex's former cardiologist, Dr. William Blanchard. A real treat was serving on a panel discussion with Dr. Blanchard and having some time to talk to him about Alex.

What an awesome audience! I really felt like all of us connected. During the breaks, I had a chance to meet many of the families and to hear many of their stories. Most notably, there was a mother there of triplets -- all with Tetralogy of Fallot! Two of them were at the conference and they looked healthy and happy (one was visiting with Grandma). Naturally, I saw a number of precious babies and darling toddlers. It does my heart good to see so many happy, healthy children. I know there is so much hope for these little ones.

I think the comment that made me the happiest came from two women who came up to me at the end of my Planning My Bright Future speech. One of the ladies told me that she had been trying to encourage her friend to let her daughter dance. After they heard me talk about Tanya and Donna, this mother decided to let her daughter, with Tetralogy of Fallot -- just like Tanya! -- take dance lessons. :-) That made my day.

It is always fascinating to me how many of us share similar stories. One mother came up to me in a break and mentioned how her child was also originally diagnosed with cystic fibrosis -- not once, but twice! Then the real diagnosis became apparent -- hypoplastic left heart syndrome. I think the reason we parents feel such a bond is because of the similarity of our stories, our emotions and the roller coaster ride we enter once our children are diagnosed.

I hope I am asked back to speak at the AHA Heart Heroes conference next year -- which I hear will be in sunny Orlando, Florida! I encourage all of you Floridians to put this conference on your calendar. Pepper Adair and her able group of helpers really know how to put on a terrific conference and I can guarantee you that a good time will be had by all.

Sincerely,

Anna Jaworski
Thanks to professional photographer, Jordan Owens for the photo of Dad and me! To schedule a sitting with Jordan, visit her website: http://www.jophoto.us

American Heart Association Conference

2008-10-08T05:55:00.000-07:00

I am so excited to announce that I will be the keynote speaker at the American Heart Association Heart Heroes Conference in Panama City Beach, Florida on October 11, 2008. The title of my speech will be Raising a Child with a Congenital Heart Defect. It's the same title as last year's speech in Miami, but I wrote a new speech just for the occasion. Last year my speech was more didactic. This year my speech is more storytelling -- which is what I do best!

I'll also be giving a speech for another session. The title of this speech is Planning My Bright Future. I revised the speech I gave last year to include some new information. It's one of my favorite speeches to give because I tell some of my favorite stories in it. I love sharing success stories of people I've had the chance to come to know in the CHD world.

I'm eager to make some new friends in Panama City Beach. Attending heart conferences really keeps me connected to the CHD world in a special way. Every time I go to one conference, I find myself seeking out other conferences. I wondered if after Alex was older I would still think about his heart defect. I don't dwell on it like I did when he was younger, but I find myself wondering how my heart friends are doing and hoping that they are leading the same good quality of life that Alex is now. I guess attending these conferences makes me more hopeful than ever.

Skylar Got a Heart

2008-07-18T20:34:00.000-07:00

Dear Friends of the Heart:

The last two months are a bit of a blur. Alexander and I have been conducting robotic summer camps and it's been all consuming. Joseph has been training for and attending swim meets. I had a birthday come and go. And amongst all of these things have been daily updates about Skylar.

A number of months ago I "met" Skylar through his grandparents. They called me when they discovered their unborn grandson would be born with hypoplastic left heart syndrome (HLHS). They purchased books, they talked to me on the phone and they wrote emails. I came to feel a part of this family. I prayed for them, for the baby and for all the people working with Skylar.

Little Skylar has had his Norwood and a number of other procedures. Sadly, the Norwood didn't take and a new heart became necessary in order for him to survive. Knowing how few hearts for babies are available, I worried for the family and prayed all the more.

One week after his parents decided to put him on the transplant list, a heart became available. I know, from having spoken to other heart parents, that this is a difficult decision. Basically you trade one set of problems (living with an imperfect heart) for another set of problems (living with a transplanted heart). What's worse, your child's chance for life is the result of another child losing his or her own. It's a bittersweet moment when the heart becomes available because you know that another family is grieving even while your own family is rejoicing.

What a tremendous gift one family has made to Skylar's family. They selflessly gave their loved child's heart to another family and gave Skylar a chance to live. Now Skylar has a chance to hit the terrible twos, to blow out the candles on his birthday cake, to learn how to ride a bike. Thanks to the caring and loving gift of a stranger, now Skylar has hope.

There is another sick HLHS baby out there that I've been praying for. Cooper is a sick little man. He, like Skylar, has endured too many surgeries for his young age. Like Skylar, he's suffering and fighting a good fight. He's hanging in there right now and just had surgery again today to try to help him survive. God Bless Cooper and his family. I know there are many people who care and pray that he makes it.

Going to swim meets, holding robotics camps and getting ready for summer vacations are all activities that make me forget about the daily concerns that come with living with a baby with HLHS. There was a time when I was in the hospital with Alex and I wondered if he'd be with me tomorrow. I was afraid to leave the hospital lest I receive a phone call that he'd taken a turn for the worse. Would I make it back to the hospital in time? How would I survive if my baby didn't?

I wondered, in those long days in the ICU, if Alex would lead a "normal" childhood. I wondered if he'd be able to ride a bike, roughhouse with his big brother, develop friendships and maybe even someday have a girlfriend. I wondered if he could beat the odds and what I needed to do to see to it that he did. I wondered if I'd ever go a day without thinking about whether he'd be with me the next morning when I woke up.

Time had been kind to me. After many sleepless nights and entire days filled with concern, I was rewarded with months and years of happy memories. There are still concerns at times. There always will be. But there are so many good times, so many times free from heart worries that I feel a need to let other heart parents know that things can get better and someday heart concerns won't consume your life.

Normal for us "heart" parents isn't normal for other parents. We appreciate the small things more than others do. We have a new baseline for what "difficult" or "unbearable" is. We know what really matters and lose patience with others who don't get it. Our eyes are open to the best and the worst that life has to offer. It's not easy and it's not the path that we would have chosen, but gaining wisdom isn't easy. When you have a heart child and you choose to love that child with all your might, and you pray for that child like there's no tomorrow and you believe with a faith that is far beyond yourself, then you become a different person. I'd like to think that all of us who go down that path are a little stronger, a little wiser and little more compassionate. I'd like to think that our children bring us closer to God.

Skylar got a heart. Miracles do happen. May God and the angels of heaven watch over Skylar and his family and may all who are touched by this young life witness this incredible miracle - a life reborn thanks to the kindness of strangers.

Don't take your organs to heaven. Heaven knows we need them here. Spread the word.

Peace be with you all.

Anna

Growing, Changing and Miracles

2008-05-16T17:33:00.001-07:00

Dear Friends:

May 16, 2008 was a momentous day for the Jaworski family. Last week Alexander and I attended the Texas State Technology Students Association competition in Waco, Texas by invitation of robotics coach, Sam Saenz. Mr. Saenz hosted the 2008 Robofest Cypress this year and I was fortunate enough to be his emcee while Alexander competed in the Sumobot portion of the competition. He was taking his students to this state competition and wanted to meet with us again.

The competition was truly remarkable. It's amazing to me how well middle school and high school students can do when given the right motivation, instruction and opportunities. We saw a few robotic entries, enjoyed seeing improvements made upon the Robofest entries we had seen just the prior month and reading about the students' experiences with their projects.

Perhaps the most wonderful thing to happen to us, though, was when we met with a representative of Texas State Technical College. She was friendly and gave us some information and then she told me that as a homeschooler, Alex could enroll in their dual-enrollment program -- and he wouldn't have to wait until he was 16! Not only that, TSTC has a Robotics program AND a Nanotechnology program. Here is a picture of the entrance to TSTC:

It took us a little while to find TSTC, but now that we know where it is, it will be a cinch to find it again. It's right off of I-35 near the Department of Public Safety building off of Craven. I mistakenly thought it was close to the Unitarian Universalist church we used to attend, but that is McLennan Community College. So I took the scenic route to get to TSTC. :-)

Texas State Technical College is huge! I had no idea there were so many buildings there. We went to the John Connelly building first and then we were quickly redirected to the building we needed to go to. Everyone giving us information was so friendly and inviting. There were school buses on campus because some of the schools had brought students to the college for something akin to an open house.

Alex met with Lucy Price in the administration building and she talked with us for a while. After finding out what Alex's ACT score was (he took the test when he was 11), she asked the Registrar if Alex could be admitted. I had neglected to make Alex take the writing portion of the ACT, so I had signed him up to take the ACT again, this time with writing, in June. Ms. Price said that would be fine and it looks like it should not be a problem for Alex to start school at TSTC in the fall, but she wanted us to meet with a counselor to make sure Alex had all the prerequisites needed. She took us to meet Karen Armstead who was a complete delight.

She and Ms. Price were professional yet friendly. They treated Alex with respect. He really appreciated that. Now he is about as tall as I am. I can't believe my baby is growing up and changing into an adult. I can't believe that next fall I might be taking him to TSTC for his first college course. This all seems to be happening way too fast.

On Thursday we will go back to TSTC. Alex will take their entrance exam (math, English and writing) and that will let us know if he will be officially admitted. At 1:00 we will meet with the head of the Nanotechnology department. Alex is excited about that. Around 2:15 we will meet with the head of the Robotics department. It will be interesting to take a tour of the school and talk with these people. I can't wait to see if Alex really fits in at this college.

Growing and changing . . . if we're lucky our "heart" children will grow and change. One thing I didn't write about (because of my hiatus from writing while grieving for my grandmother) was a very important series of phone calls I had early this spring. For the last 18 months we have been watching and evaluating Alex to determine if he is going to need additional open-heart surgery or possibly a catheterization to try to repair his heart. For 18 months I've been on pins and needles wondering if at any time we'd be driving to San Antonio for Alex to have surgery with Dr. John Calhoon -- the man who worked on Alex's heart twice and saved his life. For 18 months I've put some projects on hold knowing that my life could change, literally in a heartbeat.

Early this spring we met with Alex's cardiologist Dr. Patrick Finnigan in Austin. Again he looked Alex over but this time he exclaimed over how tall Alex had become! I think he is now as tall or taller than his cardiologist. Alex is still thin, but he looks good. Most people would never guess he has a heart defect unless they saw him running around shirtless. Dr. Finnigan sent all of Alex's records to Dr. Calhoon and they had a huge meeting with all of their colleagues at both facilities (Children's Hospital in Austin and University Hospital in San Antonio) and the consensus was: Alex is doing great. Let's not mess things up. Let's look at him again when he's around 18 years old!

Eighteen years old! I was thrilled! Now of course we'll still have visits with the cardiologist every six months to check hish heart, but provided everything looks the same, no intervention will be needed for years. This is a huge relief. Dr. Calhoon believes that if Alex continues to do as well as he has for the last 13 years, by the time he really needs intervention, technology will have caught up to his needs and we'll have something available to help him.

Who knows. As a future graduate of Texas State Technical College specializing in Nanotechnology, Alex could actually contribute to finding something to help himself, and others with congenital heart defects. If that's not a miracle, I don't know what is.

Peace,

Anna

Healing

2008-05-13T12:51:00.001-07:00

Dear Friends:

I believe we are in a time of healing now. Here is a photo from the Our Lady of the Lake University website:

The OLLU president said, "Our Lady still stands." I believe the faith of the community and the fact that this appears to have been a simple accident, and not an aggressive act against the community, will mean that we can heal from this tragedy. I know I contacted some of my OLLU friends and we are all going to do what we can do to help OLLU. My friend, Beren Gaule, went to the university to help provide counseling to those affected by the fire -- which I'm sure was everyone.

Sometimes bad things happen to good people. No one understands that better than the CHD community. And yet, despite having a child born with a "broken" heart, I think those of us in the CHD world also know how very lucky we are. We realize the importance of everyday. We don't take the little things for granted. We appreciate things that others usually overlook.

Perhaps the same will be true for the OLLU community. We always took the university for granted. It had been there for over 100 years. Surely it would always be there. Now we know how lucky we are to have been a part of something so beautiful and special. Maybe now we will cherish it a bit more than we did before the fire. And like the members of the CHD community, maybe the OLLU community will realize that the most important thing is Life. All of the lives of the firefighters and students and faculty were spared. In the CHD world, when one of our children is spared, it makes us realize how very lucky we are.

My prayers and good thoughts go out to both of these special communities.

Love,

Anna Marie Daigneault Jaworski
OLLU class of 1984 - B.A. in Speech Pathology

Our Lady of the Lake University Fire

2008-05-07T12:33:00.000-07:00

It is with a broken heart that I write a note in the blog today. The beautiful, one-of-a-kind university where I really grew up and went from being a child to an adult caught fire last night. Arson is suspected.

Here is a picture of the university in all its glory:

And here is a picture of it today:

It is inconceivable to me that someone would want to do anything to harm Our Lady of the Lake, any of its students or the beautiful traditions and rituals that are such an integral part of OLLU.

My sister called me last night to tell me OLLU was on fire and it was on television (in Houston). I was on my computer and hadn't watched the news. I was in shock. When I hung up the phone with my sister, I went online and surfed the Internet until I found the story. Tears immediately sprang to my eyes. Part of my past was on fire. My heart sank.

When Alex's heart defect was diagnosed, I called Father John at OLLU to see if he would baptize my baby. Alex hadn't been baptized yet and for us Catholics, baptism is very important, especially when the doctors tell you they're not sure the baby will make it through the night. It just so happened that Alex was admitted to University Hospital in San Antonio the very weekend OLLU was having its Alumni Reunion. It just happened to be my 10th Alumni Reunion, as a matter of fact.

To my surprise, Father John told me that he was too busy to come to the hospital to baptize Alex. He suggested I get our parish priest to do so. Our parish priest was 4 hours away in Gatesville, Texas. Father John wouldn't budge. At first I cried and was distraught. Then I took that as a sign from God that he wasn't ready for Alex yet. I believed that God wouldn't take Alex before I had a chance to baptize him.

Between Alex's first and second surgery, I took Joey and him to OLLU to visit one of my favorite professors, Sister Janet Griffin. When I saw her, I told her about what had happened. She got a look on her face that I remember from being in her class and she told me under no uncertain terms to get myself and my baby to the chapel and baptize him myself. So I did.

Alex is now 13 years old. I baptized both Alex and Joey with holy water from the OLLU chapel. It's hard to believe that was 13 years ago.

I hope all of you will say a prayer for the OLLU community. I'm sure OLLU has touched others like it has me and we will all need to be strong and pull together as a community in order to help it become the glorious university it once was. Burned or not, the heart of the university will live forever as long as alumni, such as myself, remember and cherish that very special and sacred place.

Peace,

Anna

P.S. For more pictures about the fire, you can go to http://www.mysanantonio.com
To see OLLU itself, go to this webpage: http://www.ollusa.edu/s/346/ollu.aspx?sid=346&gid=1&pgid=920

The Kindle, Iron Man and Percy Jackson

2008-05-05T11:12:00.000-07:00

Greetings! I plan on updating my blog more regularly than I've been doing. The last six months were very hard with my grandmother being ill and then passing away. It's time to get back on a regular schedule. She would have wanted it that way.

The Kindle

I'm sure most of you reading this blog are technologically savvy and I'm sure you've heard about the Kindle. It's taking the world by storm. I just saw this weekend that Amazon.com has caught up with its orders and now the Kindle is available right away. I read somewhere that it was taking from two weeks to a month to get the Kindle when the supply was short. It's good to know they've caught up.

The Kindle, in my opinion, is going to revolutionize the publishing industry. I am so excited by what this new technology promises. No more huge inventories to have to maintain. This is going to save a lot of trees! No more waiting for days or weeks until a book is delivered to your door -- you can have it in the blink of an eye. No more having to hunt for a dictionary to look up a definition for an unfamiliar word -- the Kindle has a built-in dictionary. What a wonderful tool this can become for college students, or even more importantly, for backpack-laden, sore schoolchildren around the globe. Imagine having all your textbooks in something the size of a paperback book -- and you can highlight in it, take notes and even store additional, supplemental resources there, too. Some backpack companies may feel the pain with the advent of the Kindle.

Many years ago when I was first working on The Heart of a Father, I envisioned an eBook version of the book. I could see us having photos, videos and even music all in a book. I was thrilled to think of what it would look like, feel like and sound like, even though the prospect of learning about all of that was daunting. With the Kindle on the market now, I wonder how that will change the way I see our book? I already discussed this with my marketing vice president and we've agreed we need to make our book available on the Kindle. I'm curious about what exactly that will mean.

As I learn and discover more about this phenomenal publishing format, I'll keep you all posted.

Iron Man

This weekend Alexander and I went to see Iron Man with some friends of his. The movie was excellent. In fact, it was so good, Alex went to see it the next night with his dad. He enjoyed it even more for seeing his dad's enjoyment.

As our children age, it's so easy to step back and step away from them. Their taste in books, music and movies is often different from our own. But I think that's an even more important reason for us to share, share, share.

Homeschooling allows me more opportunities than most parents have for sharing. Almost everyday Alex and I read aloud together. When I was homeschooling Joey, too, I went though a long phase of reading nothing but Newbery books or classics. When Joey left the homeschool, Alex got a twinkle in his eye and said, "Now we can read what we want to read!" I found this very funny, but also on target. His brother is not a lover of fantasy and science fiction like Alex and I are so he wouldn't have appreciated the books we've shared over the last year and a half.

We started with the entire Narnia series. Of course we enjoyed the movie when it came out, too. We read the Snow Spider trilogy by Jenny Nimmo. Then we moved on to the Eragon series (and its movie!). Because of my book club, I was able to throw The Pearl by John Steinbeck in the mix, too. Lately we've been reading the Charlie Bone books.

Hollywood really needs to make some movies based on the Charlie Bone books. They are great. In between all of that reading aloud we also shared books that we read to ourselves -- most notably the Percy Jackson series.

What I loved about Iron Man was his message: It doesn't really matter what you do in life, how rich you are or how famous you become if you don't do something for someone else. This is something that I talk to Alex about a lot. I believe Alex's life has a purpose. His life has inspired so many people. In some ways, Alex is an Iron Man. I found it fascinating how the character's weakness -- and then his strength -- dealt with his heart. Just like Alex.

Percy Jackson

I wrote about Alex and me meeting Rick Riordan months ago. Lucky Alex gets to meet with him again! My friend, Cristy, has graciously offered to let Alex accompany her family to another book signing by Rick Riordan. I am jealous! Joey has a German National Honor Society Induction ceremony the same night at the same time, so I can't possibly go to both.

I'm going to ask Cristy to take a picture and I'll post it on the blog for you all to see. Mr. Riordan really inspired Alex. It was after he met this awesome writer than he came home and really started writing with a passion. Hearing Mr. Riordan say that the hardest thing for him is to actually finish a book was something that Alex could relate to. Now when he gets stuck on his story, we discuss how even famous authors feel the same way and how you just have to slog through it sometimes.

Just recently Alex and his father (Frank) joined a writers' group in Austin. The group meets specifically to talk about science fiction and fantasy writing. Alex came home so psyched after that meeting that I couldn't get him to bed until after midnight! He was too busy editing his outline and a chapter of his book. When he goes to the next meeting, he's bringing two chapters of his book to share in public -- something he's never done before. I'll keep you all posted on how it goes.

I hope all of you have something to be excited about, something to be passionate about and something to share with others today.

Peace,

Anna

Death, Near Death and Feeling Thankful

2008-05-01T09:25:00.001-07:00

It is amazing how time can get away from you when you are grieving. I am sorry for taking so long to post to the blog again. It's been a little too painful for me to write, but today I feel the need to write.

The beginning of the year started the way it did last year -- with the completion of Robotics season and heavy-duty swim season. The District meet for swimming is in February so January and February are full of practices, meets and time spent making hotel arrangements and trip arrangements. This year was no different except that Grandma was sick and we kept spending time at the hospital in addition to our already-full schedule.

Joey was actually at his Regional meet at the University of Houston when I got a call from my dad. Grandma was being admitted again. She was not feeling well. I was a little relieved. Alex, Frank and I had visited her that week and she didn't look good. When Frank saw her, he felt she was doing fine and didn't need to go to the hospital, but I was worried.

My sister was supposed to come to the swim meet to cheer on Joey. He was the only swimmer from our whole county who made it to the finals in Houston. When she heard Grandma was being admitted, she drove to Temple instead. I was glad and eager to get on the road myself. Joey didn't know what was going on; I didn't want the news to interfere with his swim. He's hoping to make it to Junior Nationals sometime this year.

By the time I got home from Houston, things were not looking good. My aunt and uncle came from Mississippi. The week was one long roller coaster ride. Things wouldn't look good and then Grandma would rally back, giving us hope that she'd make it out of the hospital and back home with us. She started dialysis. That was brutal. Because her kidneys were in such bad shape, they had to do a series of dialysis treatments. She seemed to do well with the first two, but the third one seemed especially punishing. It was just too much and she had no reserves. She was nothing but skin and bones. A doctor told us that she wouldn't be able to come home to live because it would be too much for one or even two people to take care of her with her needing dialysis several times a week. We knew Grandma would not be happy about that, but still she fought.

They moved her to the floor and we were all relieved that she was in a private room and seemed on the road to recovery. We left for some much-needed rest. When the phone rang at 2 a.m. Frank was the one to answer it. He told me not to worry about anything, he'd go to the hospital to check everything out and call me if I was needed. At 2:30 the call came. I woke up Aunt Terry and Uncle Dean. We rushed to the hospital.

Grandma held on until my sister arrived from Houston. We had a priest come to deliver last rites. He was wonderful and did a beautiful prayer service over Grandma. She would have been pleased. It still seems hard to believe that Grandma left us on February 16th.

Family came from all over the United States. Some stayed with me, my sister and her family stayed with my dad and some stayed at Grandma's house. That was hard for them. I don't know how they did it. When I went to Grandma's house, it felt kind of weird. I kept expecting to see her or hear her voice.

The whole family gathered at my house where we used our pool table to spread out Grandma's generous number of photo albums. The funeral home gave us some 16" x 24" display boards we could use for the visitation. Each of Grandma's children had a board where they put pictures of their branch of the family tree. Then we fixed up two more boards of nothing but Grandma, Grandma and her friends and places she had traveled. How she loved to travel!

In addition to that, we gathered some little momentos to put on display in the visitation room. Grandma played the harmonica and we found some of her old harmonicas to put out. I had a blank book I had used when I was doing a genealogy unit with Grandma and the boys. We each had our own blank book where we shared some stories about our life. Grandma had only written two, but I thought people might like to read something written by her about her life.

My sister, Aunt Terry and I did the readings for the funeral service. The pallbearers included my father, my husband and my son (Joey) as well as Uncle Dean, my cousin Chris and my brother-in-law, Jesse. Uncle Gary and Aunt Susie sang. Grandma would have been proud. It was so unbelievably beautiful.

Near Death

We've all been in a state of grief since Grandma's passing, but we've also tried to focus on positive things. Dad is the executor of Grandma's estate and that is extremely time consuming and challenging. One of the things to be decided was what to do with Grandma's car. Finally, my aunts decided that Dad should have Grandma's car and that Joey really needed a car to drive, so Dad gave us his 1999 Honda for Joey (and eventually Alex) to use. All of this took time, so Joey didn't get the car until sometime in March.

Last Friday, April 25th, Joey called me after school to let me know that he'd have to miss swim in order to work on a film he was making for his IB film class. The money for the swim fund raiser was due that afternoon, though, so Alex and I headed for the swim center with Joey's envelope of donations inside. On the way to the swim center, Joey called me again. This time he started the call by saying, "I'm okay." The sound of his voice quickly conveyed to me that while he was okay, something was NOT okay. "The car," Joey said, "the car is not so good." When he handed the phone to a police officer, I knew things were not good.

Thank goodness for my GPS unit! Joey had been out in the country scouting for a good location to shoot a picnic in a meadow scene when he lost control of his car and ended up on a guard rail. Angels surely took care of Joey and Trent who believed the car was going to flip over. Instead of flipping over the guard rail into a ravine, the car stayed put, on top of the guard rail, allowing the boys to scramble out of the car, completely unharmed.

As if Joey's guardian angel(s) hadn't worked hard to save him during his car accident, more work was needed still. I barely had Trent safely home before noticing that the skies were darkening quickly. "We're in for a storm," I said to Joey. It was much more than a storm. I was barely home before the phone rang. "Anna -- are you listening to the radio?" my father asked me. "No. I just got home," I replied. To my amazement, my dad told me that a tornado had just touched down not far from his home. More were expected in our area. Minutes after Dad's phone call we heard hail on the roof. Luckily for us, no tornado came through our neighborhood.

All of this leaves me feeling so thankful. Thankful my son and his friend were spared, thankful that the tornadoes that did touch down in Bell County didn't do too much damage and no lives were lost, thankful for another day.

Living with Alex, I've come to appreciate the beauty of every day. Having a child with a congenital heart defect means knowing that each day is a blessing and a gift. Sometimes I witness that through my heart-healthy son, Joey, too. I can't help but wonder if Grandma wasn't one of Joey's guardian angels on Friday. I know I feel her presence and I miss her very much.

Family Matters & The Heart of a Father Update

2007-11-12T10:41:00.000-08:00

Dear Friends of the Heart:

This last week was bittersweet. The bitter came in the form of a phone call at ten minutes 'til one Thursday morning. It was my sister-in-law. My husband's brother, Jack, was in the hospital suffering from a massive heart attack. We didn't know if he'd make it.

By 6:30 a.m. Jack had undergone 2 cardiac caths. He was stabilized and at a different hospital than where he'd started out. Things were looking up for Jack. Frank flew out later Thursday morning to be with him and our sister-in-law Lee.

The sweet part also happened on Thursday. My mother, two aunts and one uncle were visiting my cousin in Waco from Georgia and I was to go to Waco with Alex for lunch. I called to tell them that we'd had hardly any sleep and I was going to be a little bit late. The rest of the late morning and afternoon were spent visiting with my mother, Aunt Guyla, Aunt Paula and Uncle Otis.

Thursday afternoon Alex and I drove back to Temple so we could help out at Joey's swim meet. It was a good meet, although the much bigger team from a much bigger city romped our small team. :-( Still, the kids swam well and made some improvements.

Friday my family came to visit me in Temple. We went to lunch with my father and grandmother. What could have been an awkward event went well. I'm so glad to see my mother and father can be together without animosity. Joey and Megan (my sister's daughter) will be graduating next year and it would be nice if they could both be present for those special occasions.

On Friday night Joey and I left for a swim meet in College Station. This was a huge meet of 499 swimmers from all over (mostly central and south) Texas. Our team only brought 6 boys and 7 girls. Our boys finished 6th beating out much bigger teams! Joey got two best times and his relays helped earn the boys some good points. It was fun to watch Joey and his team do so well. Landry, our only diver, is one of Joey's best friends and I was happy to see him do well in the diving -- especially since this was the first big meet for him to attend and compete in as a diver.

We didn't get home until close to 1 a.m. on Sunday. The weekend was half over. But there was still Robotics to do! The X-Bots came over and worked very hard on their missions for a while before taking a break. During the break I talked to the boys about what they were doing and how to talk to judges about how they were interacting, changing responsibilities for missions, programs and building arms and attachments, and strategizing on the best way for their robot to earn the most points. It was an interesting meeting.

Coach Cristy and I also went over their homework from last week and reminded them about the field trip we're taking on Tuesday to the Families in Crisis center in order to continue working on their community service/robotics project. We got a lot done in 2 hours!

Then it was on to McGregor. This is a small town near Gatesville and not far from Hewitt (where my cousin lives) and Temple (where I live). We went to a restaurant called Luigi's which had wonderful food and excellent service. I was impressed.

It was the first time for me to meet my cousin Michelle as an adult. I had met her as a little girl, but that was many years ago. I also had the opportunity to meet her husband Ray. They both seemed very nice, but we didn't have much of a chance to talk because of the sheer number of us at the restaurant and the fact that my family was at one end of the line of tables and my cousin was at the other end. Still, we managed a little bit of conversation and I gave Michelle my card, so we might get together in the future.

Frank didn't get home until midnight on Friday and he had to pick up Alex from my dad's house. Saturday they went to Merit Badge College at Baylor University. We kept up with each other -- and Jack's progress -- thanks to our cell phones. My sisters-in-law (Susan and Karen) were also driving back home to Texas. We had a lot to keep up with and worry about. I know Frank and I both felt so much better on Sunday when we knew everyone was home safe and sound.

After Merit Badge College, Frank dropped Alex off at home and he went on to Scott & White to compete at the Toastmasters International Division Level Humorous Speech and Evaluation Contest. Frank represented our Toastmasters club, Texas Stars Toastmasters, and did a fine job, although he went over time by 6 seconds and didn't bring home a trophy.

It looks like Jack and Alex may be able to compare scars someday. Today they did one of a series of 2 MRIs to determine when Jack can undergo open-heart surgery. Thanks to what Alex has been through, I understand a lot of what Jack is going through right now. I never expected so much information to be the same (between pediatrics -- especially since Alex was an infant -- and adult cardiology). The nice thing about that was that when my s-i-ls had questions, and they couldn't reach Frank, they could talk to me and I could explain what they were curious about. I always reminded them that I'm just a mom, not a nurse or a doctor, but when I told Frank about our conversations, he told me I did a good job explaining things. :-) That made me feel a lot better. I hate thinking I know just enough to mess things up!

So with all of these family matters going on, it's difficult to find time to work on The Heart of a Father; however, Dad made time this week to completely finish Chapter 1! Frank is writing the connecting material for the book and he sent Dad what he had written. Dad then completed the line and copy editing and feels the first chapter is complete. I still need to give it my stamp of approval and we still have to run it by all of the authors, but it's much closer to being complete than it ever has before! It's very exciting to see the book coming together.

We were trying to do a chapter a week, but things might have to be delayed a bit. Daddy is having eye surgery this week and he may be out of commission for a few days -- as will I since I'm going to help take care of him. It's a pity we don't have unlimited hours to work on finishing the book without interruptions, but that's just not the way life goes.

I hope all of you have a wonderful week. It's going to be another big swimming week for Joey and me. On Thursday we leave for TISCA in Corpus Christi. This is one of the biggest high school meets Joey will take part in. This time they'll have their whole team together and their relays should be a bit different. It should be an exciting meet. I plan to be back in time for Robotics on Sunday.

Meanwhile Frank and Alex will be attending Merit Badge College on Saturday to finish up Alex's merit badges as he strives to become an Eagle Scout. He still has a couple of years to go, but he is working very hard toward that goal.

When I get back from being out of town, I am hopeful we'll have Chapter 2 done. I'll keep you all posted on how that progresses.

Sincerely,

Anna Jaworski

International Quilt Show -- Houston

2007-11-04T16:17:00.001-08:00

This picture is (l-r) J.D. McCain, Nancy McCain, me and Alex at the International Quilt Show in Houston, Texas. You can see one of the beautiful Congenital Heart Defect Awareness quilts behind us.

We had a wonderful time at the quilt show! J.D. and Nancy did a terrific job of setting up the quilts, information about congenital heart defects and they even had two sewing machines with a lot of material, an iron, cutting board, rotary cutters and everything else needed to make a block for a heart quilt. They gave lessons, so Alex and I made each made a quilt block. Here are some pictures of Alex making his quilt block.

Here is Alex picking out his material. Then J.D. told Alex how the sewing machine controls work. The third picture (above) is of J.D. demonstrating how Alex would need to use two hands to feed the material into the sewing machine.

J.D. shows Alex where to start sewing the first corner. Then Alex sews the opposite corner on. In the third picture you can see where both corners have been sewn on.

Now you can see J.D. ironing the seams, showing Alex where the big corner piece needs to be sewn on and then cutting the excess material.

J.D. then draws the top center part of the heart that will be blue and he pins the blue material in place. When he was done pinning the material, he showed Alex how it had to be sewn.

Here Alex is sewing one side of the blue material. The middle picture shows J.D. watching until Alex is finished (3rd picture).

Again J.D. irons, watches Alex finish the last seam and then removes the pins.

Once again J.D. works a little magic and TA DA! Alex's quilt block is complete. It's amazing what two guys can do when they put their heads (and hearts) together.

Not to be outdone, check out the pictures of my quilt block and Alex's below. Now our blocks will be part of the Congenital Heart Defect Awareness Quilt Project.

As if that were not exciting enough, we had a chance to meet some wonderful people. Alex met some other people who had been affected by hypoplastic left heart syndrome. Corrie Stassen, President of It's My Heart, came to provide helpful information to passersby. She seemed happy to meet Alex and her baby (Gavin) was precious. Unfortunately, I didn't get a good picture of Alex and the baby, although he did hold him for a while. We also met Heather Vinson and Becky Suggs -- more It's My Heart officers. I wish we could have had more time to talk to these fine ladies.

The last person I met was a woman whose best friend's child had a heart transplant. She took one of my cards and agreed to give it to her best friend to see if her husband would contribute to The Heart of a Father. To my delight, tonight I received a phone call from Maureen and she is going to talk to her husband about writing for the book. I am very excited about that because I've been looking for a successful transplant story for the book and her son is rejection-free and will be 17 years old soon.

My father, Bob Daigneault, went to the Quilt Show on Saturday and he also met some wonderful people. Dad also made a quilt block, but he neglected to take a picture of it. Drats! He said it was great to talk to Nancy, J.D. and the many other people who stopped by and whose lives were affected by congenital heart defects. He also found a potential author for The Heart of a Father.

What a wonderful experience for my family and me! I hope that next year we will be able to go to Houston again for this incredible show. If so, I think Alex and I will get a hotel so we won't have to do so much driving in one day (8 hours of driving!) and so we can enjoy some of the beautiful exhibits. I also would like to visit more of the vendors. I bought a little something to help me with another quilt project. Working with J.D. and Nancy has given me the courage to want to do more quilting.

I hope all of you enjoyed the pictures. I think it took me longer to upload all the pictures to the blog than it took Alex to make the quilt block. I thought it would be fun to see a boy with HLHS making a quilt block with a grandfather of a child with HLHS for the CHD Quilt Project. I hope all of my visitors agree.

Sincerely,

Anna

The Heart of a Father Progress Report & Heart Quilt Show

2007-10-30T19:19:00.000-07:00

I am SO excited to report that we are making steady progress on the book, The Heart of a Father. This project has laid dormant for about 5 years and I started to wonder if it would ever be finished. I fretted about it, but didn't know how I could continue to homeschool my children, run my business and do all of the other things that needed to be done AND finish the book. With my older son going to public school and my father joining my business, I finally found a way to do it all. :-) There is just no way I could do it alone.

Dad and I have broken the book up by chapters and last week we edited the first chapter -- Dads in the Hospital. This week we edited Dads Around the World, but not all of the essays we have are complete. We also discovered that the Dads Around the World chapter could still use an essay or two, especially if they were from Asia, Africa, South America, Central America or one of the many other countries not represented in the book thus far. We could also use more essays for the Catch 22 chapter. That chapter is about the Catch 22 situation so many dads find themselves in when they have to work to provide the health insurance needed for their family and yet they feel they need to be at the hospital with their child OR having to work while the mother and child are sent to another hospital in another town, state or country OR perhaps there is another Catch 22 situation that a dad found himself in. Write to me at jaworski@vvm.com if you have an essay you'd like for me to consider for The Heart of a Father.

We have received a number of CDs with music for the ebook. It's very exciting to see how the ebook is going to be different from the other books I published in the past. The multi-media aspect really makes it a fun project, albeit a bit daunting. We also have video that we'll be incorporating. I know this is going to be a challenge, but even so, I'm so excited about it! It really will be fun to see how we pull it all together.

This Friday Alex and I will travel to Houston, Texas for an amazing quilt show. The quilt show will feature quilts that have been made in honor or memory of special people born with congenital heart defects. I'm hoping Alex's quilt -- Quilt #9 -- will be there. If you haven't ever seen these quilts, please visit my website: www.congenitalheartdefects.com and look towards the bottom to the links to for Congenital Heart Defect Awareness and Legislation. That's where you can find this link.

It is exciting for us to see Jess and Nancy McCain again. We were fortunate enough to see them when we went to San Francisco. It'll be nice to see them again.

I hope all of you have a terrific week!

Sincerely,

Anna Jaworski

Miami Heart Conference DVD

2007-10-17T08:53:00.000-07:00

I am very excited to report that I had a DVD made of the two speeches I gave in Miami at the American Heart Association Heart Heroes Conference. This is the very first DVD for Baby Hearts Press to sell. We learned a lot making this DVD.

It is always hard for me to watch myself on television because I see so many flaws, but I watched this DVD and was happy with the results. The gentleman I hired to put the DVD together did an awesome job of putting in the PowerPoint slides that I used.

Most of the stories I told in my speeches deal with Alexander and hypoplastic left heart syndrome, but I did talk about some other people I know with different congenital heart defects. I mentioned some people from The Heart of a Mother because every conference participant received a free copy of the book. I even used some of the pictures from the book in my presentation. One of the neat things I was able to do was to show some pictures of people from the book, which was published in 2000, and then later in my speech I showed a much more current picture. It's been so much fun to watch some of these young people grow up.

I wanted to upload a picture of the DVD in my blog, but for some reason, this blog is having problems accepting pictures from me. I'm wondering if it's because I'm using FireFox as my browser. For whatever reason, it's not working. :-( I'll try again later and maybe then I'll be successful.

American Heart Association Heart Heroes Conference

2007-10-08T08:42:00.000-07:00

I wish I had brought a camera and could have taken a ton of pictures at this amazing conference, but I was too busy talking! It was so much fun meeting the Miami heart families. The children were all over the place having a wonderful time. The parents, you could tell, were relaxed with having the volunteers channel their children's energy into positive experiences. There was an electric excitement in the air. I'm still feeling the effects of it days later.

The keynote address went very well. I had practiced the speech so much before I left that I was afraid it wouldn't feel fresh, but the energy I got from the audience really pumped me up and I think I gave the best presentation in Miami. I know I made some mistakes -- there were some distractions that caught me off-guard, but I know I was forgiven because so many kind parents came up to me afterwards and thanked me for my talk. It really felt good.

I think what made me feel best, though, was when I was out in the lobby during a question-and-answer session and a woman came over to me exclaiming about how Alex was in karate. She turned to her husband and said, "Alfonso can do karate!" Her husband was all smiles and they were so excited to know that they could go home and sign their son up for karate. Apparently he had been begging for years. Now, since they'd heard Alex's story, they were ready to let him try. That makes every minute of preparation I took for my speech worth it.

It was so exciting to see Gene, Ethan and Nathan Bortnick! I met Gene in Philadelphia over a year ago, but I hadn't met his darling little boys. Nathan was born with hypoplastic left heart syndrome and Ethan is heart healthy. Ethan has been all over the news lately because he is a piano genius. He charmed the conference participants with several songs on the piano. What was so delightful was how he told us the story behind the song he composed himself -- at 6 years of age! Then, at the very end, he had us all stand up and do the chicken dance while he played the music on the piano. He is quite the showman! I'm so happy they were able to attend the conference. I only wish I could have had more time to talk to them.

The break-out session speech went well. After the keynote, I had a chance to get a quick bite to eat and talk to some other parents. In the bathroom, I talked with a young mother who confessed to me that she didn't know the name of her child's heart defect. She told me that she had all of the medical records and she was going to go home and look it up. In the course of our dialog, I asked some questions and talked about the most common heart defects. By the time we were done talking, she realized that she did know the name of her daughter's heart defect -- she had a VSD! Now she knew what it was, she told me that she wasn't going to forget it and she was going to make a point of letting her daughter know the name of her heart defect as she grew up. Another victory! Empowering parents is what this conference was all about!

Right before the last talk I was to give, a mother came up to me and told me about her son's karate experience. She told me that her son, who had aortic stenosis, was the last one to finish running the required laps for his Black Belt test. As he was going around for the last lap, all of the kids in his program got up and ran that last lap with him. What a beautiful story! I had to use it in my speech, but I didn't realize it was going to bring tears to my eyes!

The audience was so overwhelmingly supportive and loving. It underscored the importance of having our heart families get together. No one understands us like we understand each other. I felt such a bond with them. It's been a while since I've been to a heart conference but now I'm eager to attend another one -- this time with the whole family. I haven't felt a need for support in my own journey of living with a son with a heart defect lately. I forgot how wonderful it feels to give that support to others (it's different when you're doing it over the computer than when you are face-to-face). The amazing thing to me was that in giving the support away, I felt so enriched! I know I have in the past, but this time it was different. It's been a number of years since I've spoken to a group of heart families. I've changed a lot as a speaker. I was much less nervous about remembering exactly what words I was going to use this time and more focused on how my message could help as many of those parents as possible.

I really appreciate Pepper Adair of the American Heart Association and all the hard work she put into the conference. It was a wonderful experience for me and I believe we worked well together to help other parents of children with congenital heart defects to feel empowered and able to help their children have a bright future. It was the kind of conference you hold deep in your heart for a long time. I don't know if Pepper can appreciate the kind of gift she gave those families to the degree I can. As a heart mom, I know how frightening the future can seem for our children. I also know that by being united and working together we can make our world a better place. Thanks to Pepper, I had a chance to bring some sunshine and happiness into the Miami area. Little did I know I'd leave with more than I brought.

My dad video-taped the sessions. I gave the tape to a gentleman I know who is great at putting videos together. He helped create an awesome video for me that I can distribute to people who are interested in hiring me as a speaker. I want to put it on my website, but my webmistress says it's too long. Eventually I'm going to ask Peter if he can somehow make the video into 1-minute clips. That's what Sue (my webmistress) says it needs to be. For now Peter has his hands full trying to see if he can turn what Dad taped into a DVD others might want to watch. I'll keep you all posted on what happens. If it turns out well, we'll make it available for sale on the website.

I hope the video does come out well because I feel there is so much we can learn from one another. I was a bit nervous part of the time because I was holding a microphone that had a cord and I felt constrained on how far I could move. I really didn't want to trip and fall over the cords and they were not secured properly. I also used a PowerPoint presentation for the first time in my life. That was quite an experience, but thanks to Dahlia, all of the slides were fine and I was able to click through the pictures with the remote control without difficulty. The only bad thing was that I couldn't move very much because of the projector. I usually like to be out where I can touch everyone and that just wasn't happening with this presentation.

I learned a lot about myself in putting this presentation together. The keynote was about finding balance in your life and in the process of writing the speech, I found myself re-evaluating my own life and making some changes. I did a lot of research on the psychosocial development of children with congenital heart defects. I was delighted to see some actual literature in medical journals addressing this important aspect of raising a child with a congenital heart defect. The best news was that our children's heart defects don't have to doom them to a life of unhappiness. Our children have the same opportunities to lead a normal life as a heart healthy child IF we parents do our part. There is a very small fragment of the population whose heart defects are so severe that they are greatly restricted and cannot lead a normal life, but the number of people who are in that category seem to be decreasing as technology and medical advances are helping to cure or palliate most heart defects.

I think I'm going to have to go farther with some of the ideas and things I learned from putting together two speeches for this conference. I have a whole binder of articles I found on the Internet and I think I'm going to be writing more about these topics. Pepper put her finger on some very important isssues in raising a child with a heart defect. Finding balance, looking forward to a bright future and empowering parents were the themes I was to focus on in my speeches. If I can help other people learn those lessons, too, even though they couldn't be at that conference, I will feel our good deed will be so much better.

The Wedding, Miami and Boston

2007-09-23T19:50:00.001-07:00

The Wedding

Here is a picture of my grandmother, father, sister and me at my cousin's wedding. I'm standing next to my dad and my sister Chrissy is sitting next to our grandmother. Megan, my beautiful niece, is taking the photograph. :-) Unfortunately, the pictures of all of us didn't turn out well. :-( I hope to have some color pictures after a while. Megan took the pictures deliberately in black-and-white to fulfill a project in school.

So Grandma made it to the wedding and she even danced at the wedding. Megan got a picture of that, too, but sadly it didn't turn out well.

Crystal was gorgeous. I think brides always look lovely, but Crystal was clearly in love with Mike and the look on her face made her more beautiful than ever. I wish those two lovebirds all the best. It was very nice of them to share their special day with us. I can't remember the last time we had so many family members gathered together . . . I guess it was for Grandma's 80th birthday, but Crystal's family couldn't make it to that. So this is the first time we've had that many members of these families together. It was very special.

Miami Conference (see www.congenitalheartdefects.com's calendar for more information about this conference)

Since I've been back from Mississippi I've been very busy preparing for the conference I'll be speaking at in October. It is going to be so wonderful. I just found out that there is going to be a very special little boy performing for the group during lunch. The piano player is a brother to a little boy with hypoplastic left heart syndrome. I'm so excited that I'm going to have a chance to meet this little boy. I met his father in Philadelphia over a year ago. At that time I had a chance to hear Gene talk with pride about his two boys. Now I'm going to have a chance to meet them and his wife. It will be great to see the whole family under such happy circumstances.

Boston Conference (go to the www.congenitalheartdefect.com calendar for more information on this conference, too)

I've just finished reading an email from Mary Kay Klein, the organizer of the Boston conference for adults with congenital heart defects. Mary Kay has been helping to organize the conference in memory of her daughter Karen. I am so happy that I'm going to have a chance to attend this conference. Now that I see Alex becoming a young man, what these people have to say is going to be even more meaningful to me than it would have been 10 years ago. While I don't know if any of the speakers will be adults with hypoplastic left heart syndrome (the heart defect Alex has), I'm sure many of them will also have complex heart defects similar to Alex's. I'm also certain that the challenges they have faced are ones Alex will also have to face someday.

Most importantly, I will have a chance to hear how some people have survived having a heart defect and even thrived. It is such an inspiration to listen to these people. I met Karen years ago when she visited Austin to see a heart friend she'd made on the Internet. My friend, Jane Hunt, and I had gone to a support group meeting at Brackenridge Children's Hospital and we couldn't wait to meet this young lady. We then took Karen and her friend, Anthony, where they needed to go after the meeting. That gave us a few minutes to talk to them away from the others at the meeting. They acted just like other college kids we knew.

Mary Kay wrote for The Heart of a Mother and her husband Ted is writing for The Heart of a Father. I'll be bringing my autograph copy of my book for Mary Kay to sign. So far I've gathered quite a few signatures. I can't wait to finish The Heart of a Father so I can do likewise with the dads I have a chance to meet.

I hope you all had a great weekend!

Sincerely,

Anna Jaworski

HOF Update

2007-09-07T20:59:00.000-07:00

I know I just posted a note about what I'm doing regarding public speaking and Baby Hearts Press, but I thought there might be some of you out there excited to hear about how The Heart of a Father is going.

Having my dad, Bob Daigneault, help with this project has made a world of difference. Because of some technical problems, most of the electronic versions of the essays were lost. I was devastated to discover this. We sent the word out to the dads and some were kind enough to send us what they had. Of course I had printed versions of everything I'd already worked on, but it was starting to look as though I was going to have to retype a lot of pages.

Dad went with me to Fry's to look at scanners. I got one for the business and last week we started scanning in an essay. Dad helped me get started and left. I don't know what I did wrong, but even though I seemed to scan the pages in correctly, when I saved them, something odd happened. I saved each page individually and gave it the author's name and page number. I don't know why the scanner took Page 1 and saved it 5 times in a row -- as pages 1-5.

Realizing how frustrated I was after a long time of fighting with the machine, Daddy came to the house and took it away. I don't know how he worked his magic, but somehow he was able to scan and save Jim Larson's 13-page essay in two PDF documents. They look great! He's already sent them to Jim for updating and revising. We're on our way!

I think what has taken us the longest amount of time to do so far has been housekeeping types of activities. We've been trying to reconnect with all the contributers and many email addresses are no longer any good. We've been trying to clean up our YahooGroup listserv, too. There are people on there we don't know and we're trying to figure out who is who and why they're there. There's the whole issue of who has sent in his permission form and essay and who wants to update what he's sent. All in all, it's very slow going! The good news is: it's going.

Dad made a timeline for us when we started working on this project and so far we're doing what we hoped to be doing. I'm happy to announce that thus far Daddy approves of the developmental editing I'd already done and he is looking forward to doing the line editing. I already did a lot of copy editing when I did the developmental editing, but Daddy is going to make the book more consistent.

At our weekly meeting we took a look at all of the wonderful pictures, videos and music that the dads have sent us thus far. We are so excited about this project! It really is going to be a special eBook experience. Stay tuned for more updates as we continue to work on this very special project. And if you are a contributor and you haven't heard from us, it's because we can't contact you. Please contact me! My email is jaworski@vvm.com. Even though some essays have been accepted for publication, we still want to touch base with everyone and let everyone know what's going on. We appreciate people helping us spread the word!

Sincerely,

Anna Jaworski

A Wedding, A Speech and Toastmaster Friends

2007-09-07T20:39:00.000-07:00

Tomorrow morning I will be flying to Mississippi to attend my cousin's wedding. I hope to have some good pictures to post sometime after I get back. My aunt is going to be the photographer for the wedding and I hear she is wonderful.

I hope C.J. and Michael have a beautiful day for their wedding. The weather predictions are not as favorable as we'd like, but then again weathermen (or women) are not necessarily known for their accuracy. My Aunt Terry has wisely decided that a tent would be in order, so I'm sure we'll be covered.

This wedding was an excellent excuse for my grandmother and me to go shopping! Having just been sent home from the hospital days earlier, I really didn't think Grandma would be up for a big shopping excursion, but I should have known better! Six hours after we started out, Grandma's purse was a little lighter and my bunion was screaming at me!

Seriously, we had a lovely lunch and then had a wonderful time finding Grandma the "perfect" dress for the wedding. Leave it to Grandma to not only find ONE perfect dress, but TWO! Now tomorrow she will have the difficult task of deciding which lovely dress she'll wear.

The past several days have been very busy planning for this trip, shopping and working on my speech (oh! and being a mom to two busy boys and homeschooling Alex!). I gave Part II of a three-part speech that I started last week at my local Toastmasters Club, Texas Stars Toastmasters. The three 10-minute speeches will add up to the one 30-minute speech I'll be giving in Miami next month. So far my Toastmaster friends have been awesome. Their advice has been right on and their comments are boosting my confidence in what I've put together. This is making me even more excited about going to the conference!

I really believe everyone should join Toastmasters at some point in his or her life. It has been such a blessing to me to be able to practice my speaking and leadership skills. I also feel that I have made some life-long friends in the process. I think one of the things I like most is that, in my experience, Toastmasters are there -- not only to improve their own abilities -- they are there to help and encourage others. In that spirit, Texas Stars Toastmasters will have their regularly scheduled meeting next week and then a group of them will go to a local restaurant for dinner and an opportunity to help me by listening to my 30-minute speech uninterrupted. I'm even going to bring the dress I plan to wear to the conference to get their feedback.

I am so excited about the opportunity to go to another CHD conference and to meet new CHD parents. I'm thrilled with the way the organizer for this event has worked with me. She has been wonderful about explaining exactly what she wants in me as her speaker. That has made planning so much easier and fun! I will post some pictures of the event on the website when I come back.

That's all for now. I feel lucky to have something wonderful like a wedding to look forward to, a goal to achieve (writing a great speech) and friends along the way to help me get where I need to be. Thanks Texas Stars Toastmasters!

Anna

Grandma

2007-08-29T11:16:00.000-07:00

I know this blog is supposed to be about Baby Hearts Press, but everyone needs to know that BHP is a family-owned and run business. Therefore, if something is happening to a dear family member, it will affect the business. That is exactly what happened last week.

Last Wednesday, my grandmother went to the Emergency Room because she was having trouble breathing. She had already been diagnosed with atrial fibrillation and was on Coumadin, so we were already concerned about her. For months she has become increasingly more out of breath, but complaints to her doctor went unheard. Finally, fearing for her life, she called my father and he quickly went to her house to hand deliver her to the ER.

Meanwhile, my husband called down to the ER to let them know Grandma was on her way. We got VERY lucky. There was hardly anyone needing to be seen when she arrived, so we went straight back. I live only a few minutes from the hospital, so I met them there.

It didn't take long for the doctor to determine that Grandma was in congestive heart failure. Because of Alex's heart defect, I knew what that meant and was able to help Grandma anticipate what was coming next. I told her that when Alex's CHF was diagnosed, the first thing they did was put him on lasix. Not surprisingly, they did the same thing to Grandma. Then Grandma, just like Alex, was admitted to the hospital. It was kind of like deja vu.

For six days we watched, worried, prayed and stayed optimistic. Once the lasix started working, Grandma's sense of humor returned. She was the ideal patient. She gave blood without complaint and let them do whatever they felt they needed to do. She was as upbeat as she could be. I was proud to be her granddaughter.

The next major concern with Grandma was damage done to her kidneys because of the agressive lasix therapy. Grandma's kidneys were already starting to have problems and she was already being seen by nephrology, but now things became more critical. There was concern that she might have to go on dialysis. It was a wait-and-see game for a while -- something we parents of children with heart defects know all too well.

Yesterday the good news finally came: Grandma was doing better and could go home! Her kidneys were starting to heal and the doctors felt she would heal better at home. She was relieved, as were Dad and I. We couldn't wait to pack her up and take her where she belonged.

The last week was another good example of how families can pull together during a crisis. Frank was so wonderful about letting me be up there as much as I could. The boys took care of the kitchen and laundry. We all went to visit her one day as a family. I'd like to think that visit really cheered her up. Dad and I tried to manage the schedule so that somebody would be with Grandma at all times except when she was supposed to be sleeping. We had a workshop we had to go to on Saturday and my sister and niece drove all the way from Houston to spend Saturday with Grandma. It really was heartwarming to see how everyone pulled together to help Grandma as much as possible.

I think that all of us were better prepared with what to do because of Alex's stays in the hospital. We know what it's like to have a loved one in the hospital. We now know what to do to be a good advocate for the patient. Dad and I started a journal with information we were being given when we started getting conflicting information from some of the different individuals she was seeing (she was at a teaching hospital -- so she had a huge team of people overseeing her care). By the time Grandma left, everyone, including my sister and niece had taken a turn writing notes in Grandma's journal. I'd like to think that the consistency which we demanded helped her to get better faster.

No one lives forever, but we knew it wasn't Grandma's time to go yet. I'm going to include a picture of her playing pool at my house with the family. Usually she runs circles around everyone. She calls bingo twice a week at two different nursing homes where she volunteers. She belongs to her church's Altar Society. She is faithful about going to church every week -- and with getting her hair done once a week! :-) But she also has something very serious coming up which she didn't want to miss: my cousin is getting married in September. She has to dance at that wedding!

Thanks to all of you who knew what was happening to Grandma and took a moment to say a prayer for her. She's doing great and I might even have a picture to post of her dancing at C.J.'s wedding in the next month.

Anna

Hastings, San Francisco and Miami Conference

2007-08-22T09:47:00.001-07:00

Greetings from Central Texas! I am so excited to be home! I have three different things I'd like to share.

Hastings

There is a bookstore in Killeen, Texas called Hastings which my dad visited. He brought copies of my books and asked if they would like to carry them since I am a local author. They very graciously agreed to carry them, so if anyone is looking for My Brother Needs an Operation or The Heart of a Mother in Central Texas, you can get them from that bookstore. They are in the Local Authors section right near the front of the store. Thanks, Hastings!

San Francisco:

We had a lovely week in San Francisco in August. We had a chance to visit with Nancy and J.D. McCain which was wonderful! J.D. is contributing an essay in the Grandfathers' Chapter of The Heart of a Father and we had some time to talk about his contribution over a nice lunch at Swiss Louis Restaurant. J.D. and Nancy McCain are responsible for many of the quilts that have been created for the Congenital Heart Defect Awareness Quilt Project. There will be a Quilt Show in Texas in the fall, so check back here for more information about that in the future!

In S.F. we visited Pier 39 (see pic above) and two different aquariums (see pic above). We also visited the wax museum, a couple of art museums, including the Legion of Honor and we also went to the Maritime Mueseum - which was really neat! The weather was cold (for a Texan - hence the jacket in the pictures), but we had two lovely, sunny days.

Miami Conference:

Things continue to progress regarding the Miami Conference. We might even have the brother of a boy with HLHS performing at the conference. He is a musical genius and has been featured on television and in some Florida newspaper articles. I'm eager to see how that works out.

I've been working on my keynote address and am excited by how it's coming together. It's hard to believe that Alex turned 13 on the eleventh of August. I'm now the mother of two teenagers. Alex wasn't expected to make it to age 5. To see that he's made it to 13 and is going strong is quite an accomplishment.

More to come soon!

Anna

Exciting News!

2007-08-01T20:07:00.000-07:00

It's official! Today I received the faxed contract from Pepper Adair and I'll be speaking at the American Heart Association Heart Heroes conference on October 6, 2007. I'm very excited about that. Anyone from the Miami area who is interested in attending this conference, please let me know at jaworski@vvm.com and I will have an invitation sent to you. We need a headcount for the conference because, for one thing, a complimentary copy of The Heart of a Mother will be given to each family registered for the conference. And get this -- the cost of the conference to participants -- free! You can't beat that! There will be a number of excellent speakers discussing relevant topics for congenital heart defect families. Once I have the schedule, I'll post it to my website (www.babyheartspress.com).

(Alex on stage for spelling bee)

(Alex at the cookie walk)

I said I would write about Alex's Harry Potter experience. It was interesting. We went to the mall because Borders had a special extravaganza the whole night long. There was to be a spelling bee, a cookie walk, face painting, etc. Alex was very excited. Things didn't work out completely as planned, but the most important thing was that we got our books and got home by about 12:30. Alex, being much younger and more curious, stayed up until 8:30 a.m. reading the book. I had awakened around 7 a.m. to finish off where I started. I couldn't keep my eyes open past the second chapter. I was amazed to learn that Alex had already finished the book!

Alex was a perfect gentleman. He didn't let any of the information slip, but as soon as I finished reading the book, we hid out in Frank's office with the door closed so we could discuss the details. Frank and Joey finished the book within a couple of days and now we're free to talk about whatever we want to -- except with certain friends who aren't quite as voracious in their reading as the Jaworski family is.

More exciting news: we've planned a trip to San Francisco and are eager to catch up with some other heart family friends we know there. Plus, this is the first time for the boys to visit the city. We're planning on going on the trolley, visiting Alcatraz, walking along the pier, touring the Ghirardelli Chocolate Factory and viewing the Golden Gate Bridge at sunset. We can't wait! Alex is excited about visiting Chinatown where he hopes to find a cool Chinese dragon to add to his collection. The boys are also looking forward to authentic Chinese cuisine.

Last bit of news:

I was finally able to get in touch with the lab which did Alex's last blood draw and . . . 146,000 platelet count! In fact it was so close to normal, that's why they never called or emailed me! I'm so relieved. I don't know why Alex had that extreme dip in his platelet count earlier this year, but I'm hopeful that now his count is normal again, we can decide what the next best course of action for Alex will be. More on that once I have some answers.

Sincerely,

Anna Jaworski

Rick Riordan and Alex

2007-07-20T06:24:00.002-07:00

I have been itching to write this blog for days now! Alex and I had an awesome opportunity just recently to meet San Antonio children's author Rick Riordan. He is the author of three childrens' books: The Lightning Thief, The Sea of Monsters, and his most recently published book, The Titan's Curse.

Luckily for Alex, he has many friends who are avid readers, like he is. It was because of Jen, Luke and Gretchen Oliver and Cristy, Kyle and Ryan Wade that we found out Rick Riordan was coming to Round Rock, Texas for a book signing. Alex and I had not heard of this fabulous author yet, but trusting our friends' opinions, we decided to tag along with them to meet him.

It's a good thing we got there early! A busload of children from El Paso also came to Round Rock to meet him, all wearing the typical Camp HalfBlood t-shirts -- bright orange in color! Although there were chairs set up for people to hear Rick Riordan share a reading from his newest book, there were certainly not enough seats for the huge crowd which assembled in Barnes and Noble.

Rick's first two books are out in paperback, and since we hadn't read his books yet, I agreed to buy those and have him autograph them for Alex. While we waited to meet and hear the author, Alex started reading the first book. I quickly learned that I wasn't going to make it out of the bookstore without also purchasing the third book in the five-part series known as Percy Jackson and the Olympians. I'm glad I went back and got the newest book!

Alex breezed through all three books within a couple of days. I've already read the first book, myself. They are awesome books! Now Alex can't wait to read the fourth book -- which Rick Riordan is editing right now. We've checked out his website: www.rickriordan.com -- and this morning I read his blog. He is easily our newest favorite children's author.

I got a picture of Rick Riordan with Alex after he finished autographing our three books, but I took it with my camera phone and so the quality is not top-notch. The memory of listening to this man read from his book and the joy of discovering a new author and favorite new series; however, was thrilling. As soon as I can figure out how to put pictures up with these blogs, I will.

Tomorrow's post should be just as exciting for me to write about. Alex and I have already reserved our copies of the newest Harry Potter book which is due out tonight! We are so excited! Our local bookstore, Borders (formerly Waldenbooks) is having an extravaganza in the mall tonight. I believe it starts at 6 p.m., but we won't get there until swim practice is over for Alex and Joey. I'm sure we'll just eat at the mall so we can take advantage of all the festivities. I'll make sure I take my digital camera tonight so I can capture some of the magic to share with all of you tomorrow.

Until then . . . I hope your day is magical and you discover something amazing today, too.

Sincerely,

Anna

Anna’s July 5th Blog entry

2007-07-09T20:03:00.000-07:00

It’s hard to believe that 5 weeks of robotics summer camps are over. Alex did such a great job with his students. It was a terrific learning experience for everyone. I think Alex was most pleased with how well his programming class went. We had found a lot of different resources on the Internet, but one in particular worked really well. The students actually solved several types of mission problems and did a great job! It was interesting to see who picked what robotic system to work with. We actually had two students working with the new robotic system and two working with the older system. Alex was able to clearly explain the advantages of the new system and after working with the different robots, I think the students clearly understood what could be done with each system.

Alex is back in the water. He rejoined the Temple Area Swim Club and he’s now in level 2. He’s really enjoying being in the water with his swimming buddies. I asked him if he wanted to compete at the Junior Olympics this summer, but he decided he wasn’t ready for that yet. I think he would have done fine, since that’s a competition kids attend to establish times, but I am respecting his decision not to go. Having to swim in a 50 meter pool is a bit daunting. I think for his first competition, he’d do better in a 25 yard pool.

Dad and I are meeting regularly to bring things up to speed with Baby Hearts Press. I’m excited that he’s going to help me conclude the editing of The Heart of a Father. I’m still disappointed that I don’t have a few essays I wanted, but I don’t want to put off publishing it any longer. Dad thinks we can have it done by Christmas -- which would be great if we can make it happen.

I’ve started giving more speeches at Toastmasters again. I’m going to give one next week. I haven’t decided what exactly to talk about, but I have a feeling it will be about robotics. I learned a lot when we went to World Robofest and I have some wonderful pictures that I think I could use in a multi-media presentation. Toastmasters usually frowns on those kind of presentations, but I think it might be nice to add some variety to our meeting.

Frank is going to be speaking at Toastmasters next week, too. In addition to that, he’s been asked to attend a seminar for a major pharmaceutical company who he’s worked with in the past. I think he’s going to start doing more presentations for them and I think we’re going to work up some joint speeches to give as well. I got really excited about the idea of doing another heart conference and I’ve already been brainstorming about the speeches I’d like to write/give. I think it will be fun. I took a break from all of that to be a full-time mom/homeschooling mom, but it’s nice for me to have something like this to look forward to.

Being a mother in my position has been a challenge. I’ve been trying to balance being a good mother and wife with being a good advocate for the congenital heart defect world. I have worked on books, articles, websites and speeches to empower the CHD world, yet I have worried about how focusing my attention on that might affect my boys. I don’t want Alex’s heart defect to define who he is -- yet having a huge scar down the center of his chest is not something to be ignored or denied. We can’t pretend he doesn’t have a special heart. So how do I help the CHD world and still give Alex a childhood where he doesn’t feel stigmatized? That has been my challenge. The way I dealt with it for the last few years is to do things quietly, mostly during the wee hours of the night. Now I’m starting to come out of my cocoon. I hope it’s the right thing to do. Like with anything we parents choose to do -- only time will tell if it was the right thing. For now, I’m going with my head and my heart and they tell me that it’s okay to talk about things I’ve learned, share experiences and help to empower others. It feels good to feel more sure about that.

Maybe it’s because Alex is about to turn 13 that I’m realizing it’s okay for me to start letting go of him and doing my own thing. Joey will be 16 soon. My boys are growing up to be fine, young men. I guess it’s time to let them spread their wings a little bit without me hovering over them lest they fall or falter. It sure is a lot harder to watch my boys grow up than it was to grow up myself. I remember yearning to be older and off on my own realizing my dreams and making my own decisions. I’m not ready for the boys to do that quite yet, although Joey is exerting quite a bit of independence with driving the car. It’s amazing to watch him growing up and becoming a man. I feel so honored to be his mother. Now Alex is starting to ask to be taught to drive. I must admit, I’m glad he still has a few years before I have to go through this again! I think I’m a bit less panicked now than I was when Joey first started driving, but I still worry about him being on the road with all the crazy drivers who are out there. How will I handle it when both my sons are out there and I can’t protect them? Being a mother isn’t easy; each phase we go through with our children just brings us new challenges to deal with. Maybe this is why so many mothers pray for their children daily. There’s no way we can hope to do it all; we need God’s help.

October Heart Conference & Recent Happenings

2007-06-03T13:11:00.000-07:00

What an awesome week I had! The first week of robotics summer camp is already over. I'm trying to figure out how to put pictures up on my website (http://www.centraltexasacademyforexcellence.com). The kids had such a great time and so did I! Alex is making new friends and really enjoyed working with the kids. All of the kids, regardless of age, did a nice job of being respectful and having nice behavior. That makes for a much nicer learning environment.

One unexpected thing happened this week. I received an email, and later a phone call, from Pepper Adair who is working in Florida with the American Heart Association Heart Heroes program. She contacted me to see if I would be interested in speaking at a conference they are putting together on October 6th. I'm very excited about this prospect!

For the last few years, I haven't been as active as I was in the heart community. For a number of years, I was speaking at a conference or event a year (sometimes more). I spent weeks or even months planning for these speaking engagements, from making all of the travel arrangements to writing and practicing the speeches and then finally going to the event itself. Since I homeschooled my boys, I had the liberty of taking one or the other with me. I would take first one boy to one engagement and then the other boy the next time. Because of this, Joey went to Vancouver with me, while Alex went to Nova Scotia with me. Sometimes I went alone (like for the Mother's Day event in Sacramento) and sometimes the whole family went together (like when we all went to the Ohio Conference before we flew out to Germany). It was a great way for my boys to get to travel with me, meet nice people and help me with Baby Hearts Press' mission.

However, I became concerned that I was allowing "heart defects" to rule my life. I was afraid that I was putting too much attention on that and not enough on living each day to its fullest. I worried that maybe my activities would negatively affect the boys; although, to that point, nothing untoward had happened. So I took a break.

For the last several years I've been so involved in homeschooling the boys, helping Joey with his acting ambitions and his swimming goals, helping Alex with the creation of a robotics team and trying to be an overall good wife and mother, that speaking engagements and attending heart conferences was put on the back burner. Since that time I have taken training to become a stroke and turn judge (for USA Swimming competitions), trained to become a robotics coach (for FIRST LEGO League/FLL) and become Joey's manager for his acting ambitions. Joey has made a couple of movies (mostly UT student films), he's been to a lot of auditions and he's risen to the state level of swimming, even being ranked in the top 1% of swimmers in the state of Texas.

Alex has gone to 5 robotics competitions as a competitor and he's had a nice success rate. The first year we participated, the team made 24th out of 76 teams. We were pleased with the results. The second year, the team made it to the quarterfinals before being beaten. The third year, the team won 1st place in the research portion of the competition! It was very exciting to bring home that LEGO trophy. This last year, the team did the best they've ever done. They won 3rd place in the robotic head-to-head competition and 2nd place overall. Had they won first place, they would have been eligible to go to the international competition in Atlanta. That's their goal for the competition in 2008. Right after FIRST LEGO League, the team extended their robotics tournament season to include Robofest.

Robofest is a totally different robotic competition than FLL. What was exciting about Robofest was that the boys got to make their own missions and they were able to create more than one robot to complete their missions. They won their state competition and then went to the international competition. That was a wonderful learning opportunity for them because they got to see so many robots made out of different kinds of kits and some that were made without the benefit of a prepackaged kit. It also showed the boys how they could make a stationary robot that could still accomplish some interesting missions.

In January of 2006, Joey asked again to go to public school. I decided that it was time to let him make a choice with regard to his place of education and I had already taken him to the college level in many of his subjects. He didn't really believe me when I told him that, but then I scheduled all of us to take the SATs in the springtime. Joey was 14, Alex was 11 and they both did great. Joey had the chance to go to college instead or high school. Because he wanted to be on the high school swim team, he chose to go to high school.

Last week Joey finished his first year of public school. I'm proud of him for doing as well as he did (all As for the year!), despite some anticipated problems. It was the first time for him to have some really difficult teachers to deal with. He learned that sometimes he would have to make changes, but he also learned that when the system just isn't working, sometimes you have be an advocate for yourself and find a different teacher. These are things he needs to be aware of for college anyway, so I guess it's better for him to be learning those things now while I'm here to help him negotiate his way through the maze of paperwork and bureaucracy.

With Joey in public school, Alex's and my homeschool changed dramatically. This last year was really a transition year for us. It was a science-intensive year for Alex. In addition to all of the robotics competitions Alex was preparing for and attending, he participated in Science Bowl, too. This is a special program sponsored by the U.S. Department of Energy. The questions were tough and Alex had to do a lot of studying. We watched movies, took field trips and did a lot of reading together to help him prepare for this competition. We also spent a fair amount of time on math, since that is part of the competition, too. What we discovered at the competition was that the higher you go in the Science Bowl competition, the more math questions -- and more difficult math questions -- there were to answer.

I'll have to write another post later describing what we plan to do in the fall because it's going to be pretty intense; however, I am also planning on working with Baby Hearts Press more this year, too.

Right now I'm making motions to change my business to make it more successful financially and to complete some long-overdue projects. I've hired my father to help me. I know if he's depending on me to do things, I'll get them done. Otherwise it's too easy for me to get distracted with robotics, driving the kids to their different activities, doing laundry, paying bills, etc. and nothing gets done for BHP beyond the everyday answering of emails, keeping up with the websites and processing book orders. Now I'm planning on getting some new material out there and I'm excited about that.

This October conference is another thing for me to be excited about. I have stayed active in Toastmasters and have continued giving speeches and working on improving myself as a speaker, but I haven't been out speaking very much.

I did speak as an expert in the heart community last year at a Federal Court. That was quite an experience! I'll have to write that up for another blog entry. But other than that, I haven't spoken much in the last couple of years to the heart community about the heart community.

I think that the rest of 2007 should prove to be very fun and exciting. In addition to planning for this conference (and it WILL take some planning since I'll be giving a keynote address, doing a few pull-out sessions and taking part on a panel discussion at the very end), I am preparing for a fun trip for the family. In August Frank and I are taking the boys to San Francisco. We're very excited about that. Frank and I went to SF a number of years ago and had a wonderful time. We knew it was a place we wanted to share with our boys someday. That someday is soon approaching and we are eagerly planning some of the sites we will take the boys to and some of the activities we'd like to do.

I hope any of you readers who live in south Florida and would like to attend this conference will contact me. The conference is mostly by invitation, but they will allow some others to attend, too. When more material is available, I'll have information online at my website: http://www.babyheartspress.com.

That concludes this very hectic, yet exciting, week. I'm really enjoying blogging, too. It is a fun way for me to write, share and chronicle what's going on in my life and in Baby Hearts Press.

Have a terrific day!

Anna

Robotics Summer Camps

2007-05-30T08:27:00.000-07:00

I am so excited for Alex! Yesterday we started a series of robotics summer camps. His Beginning Droids camp is full (see http://www.centraltexasacademyforexcellence.com for more information about his camps) and he really enjoyed teaching. He also assisted me in teaching Mechanical Engineering 1. Since he had the class last year, he knew all of the answers to my questions and was able to help the students keep up with me. We have a terrific group of boys who are very bright and did very well with their building projects.

Anybody who has a child with a severe heart defect knows that there are certain activities that will be more difficult for their children to do than for children without a heart defect, but when our children are babies, those differences don't seem too great (unless you're having to deal with feeding issues or need oxygen -- or require other out-of-the-ordinary devices). It hasn't been until Alex has started to age that I am becoming more aware of his limitations. We live in Texas and one of those limitations is how a preteen earns money. In Texas it is not uncommon for boys to earn money in the spring and summertime by mowing yards and doing yardwork. While Alex certainly can help out in that regard, staying out in the heat for hours on end is not good for him. I worry about dehydration. He simply doesn't like it. The heat drains his energy (and mine, too!).

That's why it becomes increasingly important for me to help him discover other ways to earn money. Right now he has his sights set on earning enough money to buy a Wii. He has it harder than some kids because I've always had a rule that he has to save half of what he earns for college. That makes earning money for the Wii harder because the more he earns, the more he has to save. Of course in the long run, he'll thank me, but for now, he's not relishing the thought of having to work so hard for his game system.

Last summer Alex and I created a robotics summer camp and Alex really enjoyed it. It was a great way for him to earn money doing something he liked: working with kids and robots. He can certainly earn more money teaching robotics than he can mowing yards right now. He is also learning the value of sharing his talents with others -- and perhaps equally importantly -- and recognizing and cultivating talents and skills in others. I am proud of how well he interacted with the children.

Yesterday Alex was a little apprehensive about his class. His is 12, but I had agreed to let a 13-year-old boy take the class, too. Alex was concerned that the boy wouldn't respect him or that it might be a problem. I talked to the boy's father about it and felt we at least needed to give him a chance. To my delight, yesterday Alex told me how happy he was that that boy was in his class. They really hit it off. The boy is a very good builder and very bright. I'm keeping a close eye on him to see how he interacts with the other boys. Our robotics team is losing one member because he's going to school in the fall. Perhaps this boy will be able to take George's place. We'll see.

The boys will be arriving in less than two hours, so I will need to close for now. If I can figure out how to attach photographs to the blog, then I'll post a picture from yesterday. Keeping up with the Blog has been more fun than I thought it would be!

Anna

Hematology Follow Up

2007-05-24T18:40:00.000-07:00

5/24/07

Alex’s hematology visit went even better than I could have anticipated. He still hates having to give blood, but it goes much better when Frank is there with him, too. He’s lucky to have both of us there to help him through this difficult time and I hope that eventually he doesn’t think it’s such a big deal to have to give blood.

The doctor called with his platelet count and it was 113,000! That is so much better than the 59,000 count he had previously. Clearly, Alex must have been getting over an infection. I guess I’m just lucky that he didn’t show other outward signs of suffering from the infection.

Right now we wait and see some more. They want to monitor Alex’s platelet count for another two or three months to see if it gets closer to normal (150,000) or if it goes back down where it was before. That means no catheterization this summer. At least that question is answered. :-)

The other good news was Alex gained 1/4 of an inch in height in the last three weeks and 3 pounds! He is clearly going through a growth spurt. I knew he was just by the amount of food he’s been consuming lately.

More good news: his oxygen saturation level was 82-83. It hasn’t been that high in a long time. So good news all around. I feel much better today than I did before. I guess it’s time to thank God again for all the blessings. It’s easy to forget to do that when times are stressful.

Anna

2007-05-24T18:35:00.000-07:00

Welcome to the Baby Hearts Press Blog! This is a way for me to keep in touch with my readers and friends and for me to give people an idea of what it’s like to be the mother of a pre-teen born with hypoplastic left heart syndrome (HLHS) who is post-Fontan. I commonly receive requests from readers and friends to let them know how Alex is doing. Now I have a forum to use for that very purpose.

5/21/07 I am hoping that the next post will be written with a lighter heart. Tonight I am writing with a bit of a heavy heart, although I know that things certainly could be worse. Tomorrow Alex has another appointment with Hematology.

Since Alex’s last cardiology appointment about 7 months ago, we knew that his cardiologist was concerned about his dropping oxygen saturation level (SATs) and that he was considering doing a catheterization on him. It’s been three years since the last one and I guess it’s time, but it isn’t something that Alex or I look forward to. At the last cardiology appointment, to everyone’s surprise, Alex’s SATs were actually higher than the previous visit!

Thus began Alex’s visit to the lab at Scott & White to have blood drawn. Because the first set of results showed an unusually low platelet count, Alex had to give another sample the very next week. That sample showed that Alex had been getting over an infection, but the count was still lower than it should be. That prompted a referral to Hematology and yet another blood draw. The visit to Hematology resulted in more than a blood draw to look at his platelets. They also did a Complete Metabolic Profile (CMP) on his blood. The good thing about this is that things look great -- except for his platelet count. It’s still too low.

Anybody who knows me can guess the next thing I did. It was on Google and MedLinePlus for searches on what could possibly be wrong with Alex. Alex has mild thrombocytopenia (low blood platelet count). His father has pseudothrombocytopenia. We were hoping that maybe Alex had the same condition as his father -- where it looks like there’s a problem with the platelets, but upon closer inspection, everything is fine. Unfortunately, Alex’s condition is not like Frank’s.

The next step for Alex was a visit to the ultrasound lab where they did an ultrasound on his abdomen. I’ve seen many ultrasounds on his heart, but never on his spleen, kidneys or gallbladder. The good news is that most of his organs look good. The bad news is that his spleen is enlarged. His platelets are also enlarged. This is not a good thing. It appears that Alex’s spleen is gobbling up his platelets. Not good.

So tomorrow we go back to Hematology and Alex has to give yet another blood sample. I am sorry for him that he’s having to go through this, but it’s what his cardiologist is requiring before he caths him. I don’t blame him, but I sure wish we could stick with noninvasive tests. No such luck at this point.

I’m hoping that the next Blog entry will be one with good news and that I will feel more joyful in writing it. Still, it feels good to get my feelings off my chest and onto the page. Writing has always been therapeutic for me.

If any of you have had a similar experience and would like to tell me about, please do! You can write to me at jaworski@vvm.com.

Sincerely,

Anna Jaworski
mom to Joey (heart healthy; 15) and Alex (HLHS; 12)
www.babyheartspress.com
www.congenitalheartdefects.com
www.centraltexasacademyforexcellence.com