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!