Thursday, March 5, 2009

Today has been an odd day full of odd people. We had to be at the clinic to see our geneticist at 9 this morning. It was nice to see her again, but it was a sad visit. We did get Eli's test results back and of course he had no copies of the SMN1 gene and only 2 copies of SMN2. I think that is pretty typical for babies who die so young from SMA. They wanted us to do carrier testing on us just to make sure we were both carriers; it is possible that Eli might have had a mutation that caused one chromosome to be bad, but that only happens in about 2% of cases, so it is unlikely. Dr Northrup did say she could try push for our insurance company covering PGD/IVF if we chose that route. In the end, it would be cheaper for them to spend $25,000 to help us have a non-affected baby, rather than take a chance on spending another $150,000 on a baby affected with SMA. I doubt we would take any chances having another baby without some assurance that he/she wouldn't have SMA, so PGD/IVF is the option we would most likely choose. It is all too much to really think about right now, but it is good to get some ideas and get paperwork started so we can do it if we get to a point where we think we can. I figured we would be thinking about a brother/sister for Eli at this point, but not in this kind of situation. He should have been here with us.

I think people are really starting to pick up on the fake happiness we are projecting. The genetic counselor kept talking to us today until she finally broke my guard down. I hate crying in front of people so that wasn't fun for me. It is easier for most people to think we are okay; crying is hard for them to deal with. I know a few people have mentioned my avoidance of everything, how I'm using all my projects to block out my grief. I know that's what I'm doing, but I'm not strong enough to cope with too much right now so it works for me. I do take a day here and there to cry and lay in bed, but I can't do it every day or I'll just stop getting up. I don't know if I will be able to take a class and show up every day, but I have to try something... Anything is better than staying home crying all day.

1 comment:

Anonymous said...

After 17 years of grieving for the loss of one of the most important people in my life, I have realized that there is no one way to grieve. I remember people being suprised or disspointed in how I handled my grief but at some point I finally realized that it is my pain and sorrow and I needed to do whatever I needed to do to keep going. Don't worry about doing the "right" things and just focus on whatever you need to get by. There are still days when I lock myself up in a dark room and hold one of his shirts and cry for a long, long time. I know that is what I need to do sometimes and I don't let anyone make me feel bad about being sad.