Sunday, March 22, 2009

The Gifts and Challenges of a Congenital Heart Defect

This post is part of a blog carnival I am participating in. To learn more about it visit Adventures of a Funky Heart.

Drew, 3 weeks old, 2 weeks post-op still on the ventilator

When Drew was diagnosed with a congenital heart defect, I would have bristled at the idea that there were any "gifts" that came along with our very serious, very scary diagnosis. At the time it was the challenges that consumed me. The day after he was born we were thrown into the world of congenital heart defects against our will. For those of you who don't know this world includes worry, heartache, desperation and chaos. It requires strength, endurance, faith and communication. It just might break you. It will definitely expose your weaknesses and who you really are.

This past summer Drew underwent his third open-heart surgery. We spent six weeks in the hospital due a sternal wound infection that wouldn't give up. While we were there we were put to the test once again. One of the things that is so difficult about being in the hospital for an extended period of time is that the place is so depressing. No matter what is going on with your own child, there are parents who are hurting and you can see it on their faces. You run into them in the hallways, in the playroom, in the parent sleep room. There are kids in the rooms next to you who are coding, or screaming during an IV poke. It makes you realize how very fragile life is and how things can change in an instant. It's inescapable.

I think the biggest challenge that we face as a result of CHD's is uncertainty. We don't know what the future holds for our son. We don't know if he will need another surgery next year, or not for 20 years. We don't know if the virus that is making him sick right now will get better on it's own or require a hospitalization. We just don't know...

Now that we've been in this very exclusive club for five years and have endured three open-heart surgeries, two heart catheterizations, and too many hospitalizations to count I can see the gifts more clearly. For every challenge we have faced there is a corresponding gift. Those sad, depressed parents we meet in the hospital? Turns out they really understand the thoughts and feelings that we are experiencing, because they have lived through it too. And when no one else can understand why I'm calling the on-call cardiologist over a fever of 101 all I have to do is call another heart mom to tell me I'm doing the right thing. We can turn to each other and share our fears over our own children, or others in the community. We educate and support each other. We cry together.

The uncerainty of life with a child with CHD can cripple you if you let it. Or it can teach you to treasure every moment and celebrate every milestone. Life just seems a little clearer to me now. I know what things are important, what things really matter, and what things are actually trivial annoyances. I celebrate the little things, like my son being able to walk around the zoo instead of sitting in the stroller the way he used to before surgery. That he has the energy to play sports. That he woke up this morning.

This journey has also strengthened my marriage. Going through difficult times together forced us to communicate our needs to each other, to offer support to each other and to cling to one another while the whole world spun out of control around us. It has also strengthened my faith. I may not understand why this has happened, but I do know that God is using it for good.

Would I trade all the gifts, all the good things that have come of this diagnosis if I could take away the hurt and suffering that my son has had to endure? Yes I think I would. But I know that I can't do that and these experiences are what shape me into who I am today. I believe I am a better person and have learned a lot about myself and about life through these experiences. And for that I am grateful.

Drew, 4 1/2 years old, 5 days post-op

Drew, feeling pretty good at 2 weeks post-op


Laura said...

these posts make me cry. your sensitivity and empathy tears a little at my heart every time. thank you for reminding me what it means to be a good person... love you!

Valerie said...

You look so sad in the first photo it breaks my heart. But look how far you ahve come and how much you are doing for others.

The Portas said...

I love this post. I agree 100% with all of it...that is exactly how I feel about all of what you wrote. The uncertainty, for me, has always been the most difficult part.

I hope you guys had a nice weekend! xoxo

p.s. I love Drew's fuzzy hair in the first pic. :)

SUE AND SHAY said...

You said it all in this post. I agree with every word. Drew is so lucky to have you as parents. We too have a child with Digeorge syndrome with corrected interrupted aortic arch how similar. She is two and one-half and it is so nice to see children older then her doing so well it gives me hope for her future. Thank you for sharing.

mina said...

Thank you for sharing that. It is so heartfelt and beautiful. It is hard to be a member of this club, but we do all try and make the most of it in many ways.

I wish Drew great health from hereon.

Beth Whitney said...

What a beautiful post! Thanks for sharing! :)

Kelly said...

Makes me weep. You hit the nail on the head in ways that I never could have explained. Thanks so much for making me feel much less alone.
Kelly Robinson

Allison said...

I love that post. I think heart moms are all such different people, yet so similar in our deepest feelings.
Love it.

Anonymous said...

Andrea, I heard about your blog from Steve (Funky Heart)'s CHD Blog Carnival. I'm so glad you've used the challenges that CHD has brought into your life to improve it & turn it into something even better than it was! My mom says that she doesn't think either her or my dad would be who they are today without having gone though everything they did with me as a kid. Looking back, I know CHD has absolutely shaped my life and given me some of the best personality traits I have today. My best friend says he doesn't know anyone who's more caring than I am... It's easy to do when you've been cared for so well as much as I have been!

Keep on truckin'! You never know what other great things are around the next bend. ;)

-27 year old
Pulmonary Atresia & VSD
(my heart looks a lot like your son's actually)
college graduate
regular jogger

Sue said...

I also got the link to this from the CHD blog carnival and I'm glad I did. It is so true that the hospital is a depressing place, yet a place of everlasting hope as well. I felt like there were so many of us rooting for each other's children even though we had not really ever shared a conversation - just a knowing glance or nod in the hallway or an overheard phone conversation in the lobby. I now am rooting for your child and your family! Thanks for sharing! --Fellow Heart Mom to Mackenzie, 6 mo old, transplant 7/7/09