Showing posts with label congenital heart defect. Show all posts
Showing posts with label congenital heart defect. Show all posts

Thursday, November 19, 2009

Baby Hearts Press Interns!

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!

Saturday, June 27, 2009

The Heart of a Father Update

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

Friday, May 16, 2008

Growing, Changing and Miracles

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

Tuesday, May 13, 2008

Healing

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

Sunday, November 4, 2007

International Quilt Show -- Houston

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

Wednesday, October 17, 2007

Miami Heart Conference DVD


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.