Sometimes I wonder what's wrong with me... I've looked at other blogs of some of the SMA families and while none of them think it is easy, they all seem much happier than I am. I'm NOT thankful I had a son with SMA; in fact, I'm pissed off about it. I'm glad that Eli was not born into a family where he would have been beaten or abused and I would not have traded him for any other baby in the world, but I am angry. I hate that SMA seems much more common than people realize; I'm mad that we were never offered a test to find out it was even a possibility for us. Why should only the CF test be offered if SMA has similar carrier rates?
I was so stressed out my entire pregnancy because I had a feeling something was wrong. There were times I almost couldn't turn down the street to my doctor's office because I was terrified of what they were going to find that day. The screenings we did made me an emotional wreck until we found out they did not show any problems. But despite those reassurances, the ultrasounds, the good news each visit, I knew something was wrong. I thought I was being crazy after he arrived and was okay, but maybe I somehow knew... Is that possible?
Is my lack of religion maybe the difference in me and the other families? I don't feel any longing for a belief in a higher power. It is a nice idea to think I'd see Eli again someday, but I don't really believe that. I think his spirit might still about around, but that wouldn't fit in with the mainstream Christian beliefs anyway. All is well in heaven, so he'd never know that we are sad and missing him here. He'd just be up there happy and playing, not a care in the world. I had a huge surge of anger during the few minutes I watched of the MJ funeral coverage. I think Stevie Wonder said something to the effect of "as much as we need him here, god needed him more". Ummm...yeah. I love how people always assume EVERYONE is going to heaven, even those with questionable pasts and no known faith. Too scary to admit someone might be burning in Hell, right? I am thankful nobody ever said anything like that to me about Eli. I'm pretty sure it would be an ugly scene.
So, who knows? I am trying to deal with my angry pissed off self if that makes anyone feel better. Good news, huh? I made an appointment with the bereavement counselor from Hospice today. We'll go on the 22nd and see how it goes. She told me today that his upcoming birthday is probably a big factor in all the issues going on right now. I guess anniversaries and milestones are hell on grieving parents. I think life in general is, but those days are definitely worse.