Monday, August 23, 2010

Every Heart Has a Story

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?

Tuesday, August 17, 2010

X Zone Radio Show

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:  If you miss the program, there are podcasts of previous shows available at this website:

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!

Wednesday, June 30, 2010

Living on Borrowed Time?

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.

Monday, June 21, 2010

Congenital Heart Defect Documentary

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

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 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 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.

Thursday, June 10, 2010

June Special!

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 ( so hurry and order your copy today!

Saturday, May 1, 2010

May News

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."


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.

Saturday, April 3, 2010

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

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:

Sunday, February 21, 2010

Shaun White

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.

Sunday, February 7, 2010

Baby Hearts Press February Special!

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