Wednesday, December 2, 2009

I've always been terrified of developmental disabilities, mostly, I think, because the brain is the main part that is affected. Dealing as I do every day with pretty much every*single*other type of disability - you name it: from spina bifida to chronic pain and depression, from dwarfism to the blind and deaf - I am fine with disability. It doesn't mean much. Our limbs and senses, they are just parts. Not a big deal in the end so long as our brain works.

With developmental disabilities, it's not a matter of getting the right software, equipment. It's a matter of orienting the world differently to YOU, for YOU, and a world that is often not very understanding at that.

I went through the windshield of a car when I was 4 years old. It ripped my face open and gave me a nice Auditory Processing Disorder along with my Traumatic Brain Injury. In "now-speak", this means that I'm "little 'd' " deaf. I'm not Deaf. Not part of Deaf culture, I don't sign well. I'm little 'd'; I can't hear much without my hearing aids, but there ARE sounds that I hear perfectly without. It's weird. It's crunched. It's confusing.

I'm also a few degrees away from being legally blind. That's just a family gene, nothing from the car accident.

My point here is that for me, I went from being cute kid to being covered with blood red scars and a shaved head. Then to coke-bottle glasses. Then to big fat medical hearing aids. To top it all off, I'm white and was raised in a black country. I was sick, terribly sick and tired of being the different one, the messed up one, the one with nothing going right with her.

And now, they say I'm going to have a baby girl who will be developmentally disabled. This is a two-fold blow from the disability angle:

1. For me: I DID THIS ALREADY - I checked that box off. I learned those lessons! I've been through that hell and back. I can write my own Chicken Soup book, and maybe if I was smart I would and at least make some money. I know I won't though. I have too much pride and I hate that 'special' pity party.

2. For my precious baby girl. Dammit! Is she going to have to go through what I did? Is she going to know what's going on? Will she know and care and hurt because of it?

I wonder if I'm doing her any favours in keeping her. Would she better off if I killed her? I honestly wonder. Am I giving my child a life sentence in hurt by continuing to nourish her body in mine?

But then. I love God. I adore God with every single fiber of my being. God knows me, God created me. I know, I trust that God would never give me anything that wasn't good for me. God is merciful, compassionate.

This here seems like the single biggest test of my life, to step back from what is one of my greatest fears and put my faith and trust in God.

I can't stop crying.

1 comment:

  1. It'll be ok- I promise it will. Rainbow is lucky to have a loving and thoughtful mother. I hear you- I thought I "checked that box" already too- I got my mssw in working w/ folks that have dev. dis. I have a sister with profound mental retardation and I've worked in the field most of my career. Your baby will know you- your experience in the world of disability will only make you a stronger advocate for her and will aid you in teaching her to be a strong advocate for herself. She will have happiness in her life. There is no guarantee that any child in this world won't experience some pain in their life. and just because they might isn't justification to take away their right to it. She'll be ok and you'll be ok. She won't be just some developmentally disabled random person sitting at your table. She'll be rainbow- your baby girl whom you obviously love so very much already. How lucky for both of you- You're braver then you think and she's stronger then you think.
    hugs

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