My Kids, Myself, Special Needs, Uncategorized
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Grieving Dreams

december2014 021

Sometimes you coast along for awhile, living life, doing normal stuff like I talked about in my last post, and you forget that your life is actually NOT “normal” when you have a special needs kiddo. And then something happens to wake you up and remind you that, hello, you have a lot of work to do and it’s going to be an uphill climb; for you AND your sweet baby.

I had the wake-up today.  I’ve been humming along, planning holidays, focusing on my big girl’s break-up and the fall-out that’s still floating in the air, working on redesigning this very blog, and generally living the hustle-bustle life.  In the midst of these things, we’ve been going through a total assessment process with Lucy’s therapists, teacher and an amazing pediatric psychologist from UT which has taken place over the course of several weeks and been fairly unobtrusive.  Our findings from the complete assessment were this morning. Bam.  Wake-up.

While Lucy was at school, Allen and I sat on a little couch in a therapy room with one of Lucy’s lead therapists and the psychologist, Dr. M.  Dr. M asked us how we were doing headed into our results session, and I admitted to having been apprehensive.  A couple of weeks ago I had Lucy’s ARD at school, and they sprang a request for a low-vision assessment on me.  It was the first I’d heard of it, and when you’re in front of a panel of people to discuss your child’s education plan, you’re already a little on edge.  So not a super great time for dropping new bombs.

I told Dr. M about this, and how you kind of get to a place where you feel like things are calm and you know what you need to know and you know how to handle those things.  New information can upset the balance.  I was a little scared of the new information.

One thing you learn when you see a shit ton of doctors who often see way too many patients because they are the only specialist in town, is that at some point your kid becomes a number and bedside manner can go to hell.  Dr. M, on the other hand, has a really warm vibe and is obviously passionate about her work with children.  She was compassionate about my apprehension.  She began talking to us about how it is very clear that Lucy’s brain is complex and differently wired than a normal 5 year-old brain.  As she began to explain neurons “firing and wiring”, I started to leak. Now, I am not a crier.  I am actually pretty stoic.  I don’t know why.  I hate letting people see me cry.  This time I couldn’t help it.  The tears just started and my face got hot and they rolled down and there was nothing I could do about it.  

Dr. M stopped and asked me what I was feeling.  Someone gave me a tissue.  “Sad,” I said.  And I couldn’t stop the tears.  They just kept coming.  “Do you want to say anything else?” she asked.  I shook my head and just sat there and Allen held my hand.  She looked at me for a minute, and said, “It’s okay.  There is definitely grieving for the child you imagined,” and I shook my head and we just sat there until I was done.  Then we went on, and discussed where Lucy was at and made a plan for school and therapy in the future.

And the thing is, I know this.  I have been through it, I have read the books and the articles and I have said it myself.  But just like you reach a place where you think you know what you need to know, you reach a place where you think you’ve grieved what you need to grieve and you’re done with that.  Except maybe you never really are.  Maybe every time I’m confronted with how much harder my child will have to work than her peers. or the fact that maybe her peers aren’t actually even her peers, maybe every time I will have to grieve.  Because like any mother wishes for her child, I want life to be kind to her.  I want things to be easy for her.  And while there is kindness all around us, it is not, and may never be easy for her.  Right now it’s not the child I imagined she would be that gets the tears, it’s the dreams for her that I didn’t even know I had.  

I guess grief is like the tide.  It ebbs and flows.  But no matter what, there’s a limited time for tears, and mostly we just have to get back to work.

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