Monday, August 4, 2014

Everything Birthday is a Victory

When you're preparing to become a mother, there are some things you aren't given advanced warning on. Some of it is silly: like the fact that babies indiscriminately fart on everyone and everything. Some of it you cannot predict: like your baby will be born medically fragile, and you will count every birthday thereafter as a victory.

This week, Jonas will be 5 years old. This morning started just like any other. Luis opened Jonas's bedroom door, and sang him the good morning song. (One of us always does: "Good morning to Jonas, good morning to you. Good morning to Jonas, I'm happy to see you!" This started too long ago to recall, because when Jonas was a toddler, he'd say: "Happy see you.")

We snuggled on the couch. He pitched a fit when I turned the tv off so he'd focus on eating and getting dressed.

I am thankful for every snuggle and every tantrum. My boy has a strong will, and the strong lungs to match.
I gave him a voice to fight. A voice to laugh. A voice to cry.

I've been crying this morning. Tears of sadness for one heart family, whose son is struggling through a difficult post-Fontan recovery. Tears of joy for another heart family, who just had a beautiful Make-A-Wish trip with their son, who is beaming in every photograph. Tears of relief that we are celebrating this weekend without an impending procedure, for the first time since 2011.

I recently mentioned Jonas's heart condition to someone that doesn't know us well. She said: "Oh, but that's something he'll outgrow when he's older, right?" I tried (and failed) to stifle my incredulous laughter. I shook my head and said: "No, he's missing his left ventricle. He's already had three open heart surgeries."

She means well. She doesn't understand the various and complex congenital heart defects. 5 years ago, I didn't, either.
But it makes me feel like my work as Jonas's advocate is never enough, and will never be done. There are so many people that equate "heart defect" with "non-life threatening murmur."

In honor of Jonas's 5th birthday, I ask that you please share some facts about CHDs on social media. Creating awareness creates understanding. You can copy and paste these directly, and even use Jonas's photo.

Here are 5 facts about Congenital Heart Defects, also known as CHDs:

1. Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

2. Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

3. Single ventricle heart defects, such as Hypoplastic Left Heart Syndrome, (Jonas's condition) are among the most complex and challenging forms of congenital heart defects to treat.

4. Surgery is NOT a cure for a CHD. You can repair the heart, but there is no cure for a CHD.

5. There is no known cause for CHD. Only 15 – 20% of CHDs are related to genetic conditions.

Happy 5th Birthday to my sweet boy. I'm looking forward to celebrating the victory of every year hereafter. <3