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.

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

http://www.congenitalheartdocumentary.com/


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!

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!