I am most definitely in the grieving process. I can see that now. When I first heard that when you have a child with special needs, you need to let yourself grieve, I thought "what would I be grieving"? For me, I am grieving the loss of a normally functioning child, because realistically that is what I thought I had. Then, all that was taken from me when the normal developmental milestones were not occurring. I was in the denial stage for a few months, probably from when he was 9 months old, until he was 14 months old. Because he was 11 months old when I took him tom the neurologist, so I somewhat was accepting that something was wrong. At 18 months old, scheduling the MRI showed the denial was over. The anger lasted for a year, and I still tend to revisit the anger. The depression is still hanging around, although some days I am feeling very accepting of everything in my and Andy's life.
Today I feel accepting of the fact that my son is very impaired, and will require special schooling. When I give up the hope that he will attend a normal school, it seems to help me be less sad. Constantly hoping for things that are way out of reach, is just so painful and torturous. Telling myself that Andy will be in a special school, and let's see how much he can learn, seems to work the best. Giving up the hope that he is going to sit up or crawl, and just putting him through the motions of these activities, and hoping that maybe he will just pick up a tiny fraction of what his brain needs to do these things is what I am focusing on. Not the big picture. It's too self defeating.
Some hours of the day, accepting, some hours or minutes of sadness. It's okay.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
I think it really open ended grief we deal with, its like an eternal circle we just keep going around. Dont give up hope just yet he will not sit up or crawl, Ryan did both these things really late as well. I have to take it day by day too, looking a year, 5 , 10 in the distance is too scary and not helpful. ((((hugs)))
ReplyDeleteI love this piece about Grief (click on link)
http://weemanbradley.blogspot.com/2010/02/grief.html
Thanks, I agree totally.
ReplyDeleteMy daughter was born with a rare brain birth malformation and she has West Syndrome. I go through all of the same emotions regularly. It is completely normal to feel these things. Some days are much more overwhelming than others as I very well know. Here is my blog if you are interested: www.sayholalola.com Take care my fellow Michigander!
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