It's tough being a CHD parent...

When Molly was born we entered into a group that I never knew existed and never wanted to be a part of. At times I still don't want to be a part of it. While it can be reassuring and supportive it can also be heartbreaking and devastating. Being a part of the CHD world is anything but easy. Not only do we worry about our own kids but we are constantly following the progress of other heart babies. You form unspeakable bonds with the parents of these babies. After all, they are the only other parents that know what you have been through and how you feel. Once you have a baby with a CHD you can no longer relate to a parent of a heart healthy baby. Well, I that's how I feel anyway. The parent of a heart healthy baby doesn't know what it's like to sit by your child and watch them fight for their life or struggle to gain a few ounces or monitor their O2 and heartrate everyday, give daily meds, constantly worry about their health and germs, freak out if they touch anything in public. In the process of forming this bond with these parents you also become attached to their kids. You find yourself checking their blog or going on Facebook just to make sure they are OK and when they're not it effects you. Today when I signed on to Facebook I saw that a baby had lost his fight. It wasn't expected. His mom was talking about him going in for sugery next week for his repair. But we learned pretty early on that you can be on top of the world, doing great one second and coding the next. It made me so sick when I read it. It brought me to tears. I cared so much for this baby and I never met him or his mom. It just hits way too close too home. It's not fair. I'll never understand why a baby has to fight so hard. Molly is so great at making us forget that she isn't like every other baby but when something like this happens it's a reminder that this could've been us. Before Molly I never paid much attention to the sayings "life's too short" or "make the most of each day". Now they are words to live by. There are times I still forget but right now they are fresh in my memory so I'm going to give Molly a kiss (not a hug because she hates it) and hold her for the one second that she'll allow me (because she's the only baby on the planet that doesn't like to be held) and you should all do the same to your kids or the people you love because you just never know!

Kerry