Tuesday, October 30, 2007

The Heart of a Father Progress Report & Heart Quilt Show

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!


Anna Jaworski

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.

Monday, October 8, 2007

American Heart Association Heart Heroes Conference

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.