Monday, August 1, 2011


I recently "met" parent's (online) who had a baby girl this year and she was born with Rhombencephalosynapsis. Before their daughter was born her parents found my blog. We have been in contact over the past several months and I have been able to answer a few of the probably millions of questions that swim through their heads.

An e-mail from this sweet little girls Dad got me thinking. Thinking about all of the fear and stress and questions when your child receives a rare (or not so rare) diagnosis. The unknown can scare you so bad you want to crawl into a hole. I remember when Abby was tiny and my whole existence for a few months was swirling thoughts of therapists and surgery and doctors and tests and prognosis. It consumed me. I had no idea what my tomorrows were going to hold.

In one minute I felt like we could handle it. We'd get informed and do the research and get her the best treatment available. But the next minute I would be sobbing myself into a puddle on the floor. There was so much fear. So many moments of sheer panic. I can remember holding her in my arms, staring into her sweet face and just wondering if she would have any normalcy at all. It scared the hell out of me. I feel so ill equipped. SO NOT READY. Who the hell was I to try to handle something so huge.

Thankfully the past four years have taught us so much. Time has both matured us and softened us. We know that there is nothing we can't tackle. We know that we can't worry about every little thing. We also know that we can't spend every moment thinking about all the what if's and what will be's. We've better at waiting and seeing. We still have our moments. We still feel scared and shaky and even desperate sometimes. But most of the time we feel blessed.

The little girl who scared us so many times has turned out to be a perfect little girl.

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