They gave us a print out of Boston's Chromosomes yesterday - you can see the extra one on number 21 - Down Syndrome is known as Trisomy 21.Yesterday's appointment with the Genetics doctor was not so great for me. It started with her letting me know that Down Syndrome is because MY body released a bad egg - nothing like starting out a meeting placing blame to make a mom feel horrible. I know she was not doing that - she was only explaining the science of it all but it still was frustrating! She then went on for over an hour telling us about all the "possible" horrible things that "might" happen throughout Boston's life with Down Syndrome. I really did not need that, not now. I realized yesterday that I have not really allowed the idea that Boston has Down Syndrome to really sink in. I have been focused on his heart, his lungs, his reflux, the monitors, the oxygen and all the other "preemie" stuff. The truth is he does have Down Syndrome. It does not mean I love him any less...maybe more even. It does however hurt. Two kids, both with special needs. It is a lot to emotionally (and physically) handle some days.
Anyway....she was pretty fascinated that our family had both Rett Syndrome and Down Syndrome (and also that Charlie had Bechet Syndrome) we answered lots of questions and basically at the end of the day all three syndromes are most likely not related. She truly feels they are all "sporadic genetic flukes."
One thing I already hate is the "you poor thing" look that I got from her. I guess I should get used to receiving that look from people but I hate it. I do not want pity. My kids are awesome......will my life be more challenging that the average mom raising two kids? YES! But pity, I surely do not need!
Thank you all for your continued prayers for me and for my family.....keep them coming!!!
5 months ago