Today I had a follow up post-partum appointment with my Doctor. It was at her old office by the hospital since she was on call (they have since moved locations) and the location brought back so many memories of being pregnant with Reagan. One of those very vivid memories is of me and Wes at a prenatal appointment and Wes asking the Doctor very bluntly what were the odds of our baby girl being born without any medical issues. He told her that you hear so much about the odds of down syndrome, birth defects, etc. But, what is the percentage of babies that are born completely healthy. The answer - 99%. The odds were in our favor, or so we thought.
I also remember being so nervous at the ultrasound when I was pregnant with Reagan and breathing a sigh of relief when there were no markers for Down Syndrome and that she had all 10 fingers and toes. I had it in my head that those were the worst things that could happen. I was even more relieved because I knew that I was not the kind, patient woman that could be the Mom of a child with a disability. I have always been amazed at those Moms and marveled at their strength. I now know that there are worse things...2 words, Rett Syndrome. As my husband describes them, they are the most awful words he has ever heard in his entire life.
Here we are 2 years later and trying to find the meaning of the diagnosis and why our beautiful little girl has to face these daily struggles. It must be so difficult for her to want to tell her parents want she wants or needs but to be unable to vocalize it; to love walking around outside and feel the wind blowing in her hair but get frustrated when she falls often; to not be able to control her hand movements enough so that she can play with the toys that she once loved.
But, in the end I must remember that there are definitely worse things that happen every day to children and that every day must be lived to the fullest because we don't know what will happen tomorrow.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago