NY Times article

Well, today started out with John reading me an article from the Times on Down Syndrome.  What I got from the article was that the medical establishment is trying to increase the use of genetic testing for DS for those under 35.  Apparently, 90% of those who find out their baby has DS will terminate–so this will be used to reduce the number of children with DS.  I’ve been unsettled by this all day–I am so sad to think that people will think our daughter should not live because of her diagnosis.  We have had such supportive people around us that it scares me to think of the insensitive folks we’ll encounter outside of our bubble.  I know Sophia will have struggles and face different adversities from other children, but I don’t think I could love her any more.  We do worry about her future, but then remind ourselves that we would have worries about the future of any child, and aside from making sure she is provided for when we are gone, we will focus on the present and enjoy those moments.

 

That aside, we braced for another solo day.  We are adjusting to the fact that no one stops by with a stack of freshly laundered burp cloths at the start of every day; we don’t use a new clean bottle every time we feed her; and we have to go to the store if we run out of diapers or anything else.

 

Speaking of the store, we ended up taking Sophia for a  practice run in her car seat (she has a post-NICU dr appt  tomorrow and although we could walk, we thought it best to drive ).  We need to find a stroller that faces us and it appears that other than the car seat models, the Europeans are the only ones whose strollers allow the baby to see you.  She was okay for the first 5 or so minutes, but then really let us know she really didn’t like those straps.  Of course she got hungry at the store,  and the owner said to go ahead and sit in a rocker to feed her.  I sat tentatively in a very expensive rocker, but luckily she didn’t spit up.