After learning about E's diagnosis, we read widely about raising a child with Down Syndrome. The more I read, the more I thought about how well positioned we were to do this. T and I work hard at parenting and living so our values and lifestyle are consistent. It hasn't been easy and it does come with personal and financial sacrifices. It's these things, though, that are at the heart of our family, and which made me believe that raising a special needs child something that we could be good at.
I also think that the universe must achieve a balance of some sort. Within the wider family, most of the nieces and cousins have been born to those of us of "advanced maternal age," e.g., I think the youngest woman of my generation to have a child was 34. We've all been hugely blessed with beautiful, healthy, wonderful girls. Given the statistics and how much we've loved being parents to M, I thought about how lucky we all were and how - even though no one would have ever asked it of us - that it was okay that we were the ones for whom the odds ran out. It's the universe in balance.
Being on this team, though, means that others have been selected for teams that would have felled me. The couple in the NICU whose genetically normal daughter had a congenital heart defect and are facing numerous surgeries and no guarantee of success. (It's hard not to overhear in the NICU). My beautiful 36 year old sister who had open heart surgery two weeks ago and was the small percent of patients with complications, none of which were life threatening, that take their toll. We've been lucky with E's heart. Given the statistics for which heart problems occur in Down Syndrome children, E's heart is great. There's a small murmur, which should close up, and a structural configuration which will prevent her from becoming a deep sea diver, but nothing life threating or that will require major surgery later on (knock wood). For this, I'm profoundly grateful that we've not been asked to be on this team and even more to those who are dealing with (or will deal with) heart problems.
It's this realization that we're all taking one for some team or another, that makes me very grateful for the gifts that I have in my life. So, thanks to the universe (and my sister and the couple in the NICU with the daughter with heart problems) for making this team a little easier for me right now.