Some days are harder then others. Well I should say some moments are harder then others. The bad days are few and far between. Usually it happens in moments, she looks at me a certain way or something happens, or someone says something. Well in the past few days I've had two such moments that T21 just hurts, not Sarah Grace, but T21.
A few nights ago Harmon and I were watching something on tv. I can't remember what but it involved someone having to bury their own child. And my initial thought was no parent should ever have to bury their own child, it's just not ok. And then I did it, I did the math the average life expectancy of someone with T21is 60 and I'm 26. Then I started looking around my family tree at the women. And it doesn't matter what the odds are I should not be in tears over the fact that maybe one day I might have to bury my baby.
Today I don't even know what brought it on but I had the overwhelming feelings of pity for Hannah. I've read the research and stories of how enriched siblings of people T21 think their lives. And what a blessing they think it is to their life. And maybe one day I will feel that way to. But today is not that day. My baby is a blessing but her having T21 is not. It still hurts, it still stings. I think of Sarah Grace and T21 as two different things, things that don't relate, shouldn't go together. Anyway back to Hannah, I hope and pray that she never feels like her sister is a burden or that she has to be responsible for her sister. I don't want her to ever feel... idk I just want her to lover her sister.
Believe it or not I have been doing a really good job of not worrying about things like the the fact that acute lymphoblastic leukemia is 10 times more at risk in children with T21 then the general public. Things like increased rates of thyroid disorders, gastrointestinal disorders, hearing and vision problems. The much higher risk of having Alzheimer's.
For now Sarah Grace is an extremely healthy baby and we have been blessed beyond measure not to be having to deal with so much that so many with T21 do have to deal with with their new babies, 50% of babies born with T21 have congenital heart disease.
Our prenatal screening for T21 came back completely normal. And sometimes I wish I had known in advance, but other times I'm glad we weren't told until she was 48 hours old. It gave us time to bond with her without having to think or worry about anything else but the two prefect babies God had given us.