Thursday, July 9, 2009

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.


caitsmom said...

I'm so sorry. So, many struggles. I'm convinced that we have some sense. I knew there was something wrong during my pregnancy and before tests confirmed my fears. Lots of moms will have similar stories. As for anger . . . thanks for writing about it. It helps us who also have anger and hopefully, it will help you release it. Peace.

Angela said...

Sending ((HUGS)) your way. Francisco Sr. was always scared through out my entire pregnancy that something might be wrong but like you guys we were reassured that everything was just fine after each doctors visit. I had never had the feeling until after he was born and I had a nightmare of my baby boy laying in a white casket. I never told anybody about that horrible nightmare. I didn't tell my husband until a week after our baby passed away. I felt horrible keeping it to myself but I never wanted to even think about that type of thing happening to my innocent, precious child. None of it is fair! We are very blessed for every second that we got to be in the presence of their beautiful souls.
I hope you are able to have a gentle weekend and please know that you guys are always in our thoughts.

Murphy's Law said...

Rita, never doubt your feelings and emotions. Every single thing you are going through is totally normal for this new "ABnormal" life. I don't feel that you are doing an ounce worse than any other SMA moms. Look at ALL you have accomplished in Eli's name! The difference in the way you feel, my friend, will be time. It was years (YEARS, not months!) before I felt as if I had my life back. And even now, there will for sure always be someone missing. I feel it every day. But it's not so awful to cope these days as it was nearly 7 years ago for me.

I never had the feeling during pregnancy that something was wrong, but the day we took Marshall home from the hospital after he was born (still a perfectly healthy baby as far as anyone knew!) I sat in the rocker to nurse him and I saw his obituary flash across my eyes. I brushed it off and thought how awful of me to be thinking such a morbid thing, and I put it out of my mind. It wasn't until 4 months and 6 days after that when I remembered it . . . because I had seen it for real that time.

I'm not telling you this for any other reason other than to reassure you that you are totally normal Rita. And I am sending you loads of hugs and love.