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Tuesday, June 23, 2009

The Beat of Her Heart

As though being a mom is not hard enough, throw in having a child with any type of special needs. Now I know today, everything constitutes a “special need” but 11, almost 12, years ago it was pretty cut and dry.

My oldest was born with numerous heart defects. We’re not talking one hole, but 4…and narrowing of arteries from her heart and her lungs. We found all this out when she was three months old. Imagine it please. Or actually, don’t. It was the hardest thing I’d ever dealt with at the age of 24.

I was left in a holding pattern. Told to watch for signs of heart failure. Told that they wouldn’t know for certain if surgery was in our future. It’s a humbling thing to be in a waiting room of a children’s hospital, that’s for certain.

The time between visits to her cardiologist were some of the longest periods of my life. I was exhausted to my core, feeling so unbelievably helpless I could barely function. My life revolved around my precious tiny girl, my girl who never asked for her health issues, who laughed and smiled and was happy. I held her tiny little self in my arms and listened to a geneticist tell me that she’d never amount to anything, that she’d probably never function normally. I remember looking down at her precious innocent face and just not understanding how he could know that already. How could he sit there and tell me things that haven’t been written yet?

I took her home that day, feeling completely alone and confused.

I spent the next week researching and learning all that I could, and then one morning I looked over and saw her smiling at me. That was it for me. That was the moment it all clicked into place.

I shut the computer off, picked up my perfect baby girl and never looked back.

Sure, every single day presents a new set of challenges, but we deal with them together looking dead at them in the eyes instead of sticking our heads in the sand. Yes, you mourn the loss of what you think of as “normal”….but if you’re lucky you can learn to appreciate the normal that is, not what isn’t.

This post was written by Jess, a member of LakeNormanMommies and CharlotteMommies. You can read her blogs at and

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