I was speaking with a mom of one of the kids in D’s social skills group and she shared with me that she was mourning the loss of a neurotypical child.
It is nice to have a name for what I am going through.
I am mourning the loss of my neurotypical child, I have no clue if he will get married, have children, be able to hold down a job, even go to college. These sound like silly things to worry about at this moment, but when faced with this situation it’s hard not to. No doubt I have a laundry list of things that currently worry me about him. Things like he is regressing and putting things in his mouth as if he were 10 months old again, or the fact that he can’t just stop grabbing his friends ears so they stop teasing him, or that he is scared of anywhere that isn’t brightly lit (it could be daytime with the blinds drawn and he says its dark and scary)…I could go on and on about my worries. But along with worries I am mourning and I am angry. I have lived a rough life and persevered, so I figure that I should catch a break…
The anger waxes and wanes and usually happens when i’m emotionally vulnerable and can’t really talk myself out of it, but the mourning has been non-stop.
I have a constant soul wrenching pain..it is literally a horrible physical pain. This is MY BABY, the baby I spent 6 months in a bed, pregnant, trying to save, the baby that I had these “neurotypical” dreams and hopes for.
Now those dreams and hopes have been traded for different ones.
Things that “should have been” may not be.
I have cried more in the past 4 months than I think I ever have in my life.
I say all of this with the logical reasoning that it will get better, I will accept all of it and not cry everyday, that he will be ok.
I promise you that is of no comfort to me now.
I currently spend my days protecting my son who can’t protect himself, fighting insurance companies,his pre-school and school districts to get him the care he needs. I am so tired, there are not any words to explain this kind of exhaustion.
My entire world was turned upside down when D turned 4 and his deficits became so obvious.
I don’t want to pray right now, I don’t want to reach out, I am simply trying to survive….to get through each day. I am trying to ensure D gets all he needs to be successful, raise L as normal as possible, and give my relationship with Rickey the attention it needs.
There is a letter that Jess Wilson who writes The Diary of a Mom blog wrote that I read everyday in the hopes that I can get to the point where this does not hurt so bad http://jesswilson.wordpress.com/2009/05/01/welcome-to-the-club/
I am sorry to those of you that expected a positive or an informative blog. When I started blogging, I promised myself that I would blog honestly. Today…right now…. this is my truth