Friday, January 10, 2014

Unspecified Hate

We don't use the word "hate" in our house, preferring terms like 'dislike' and 'despise', but I'm going to use that word copious amounts in this post. Please don't rat me out to Alyssa or Jackson.
I recently saw someone post on Facebook that 'some days, I hate Autism'.  I totally understand their sentiment. 

I don't have a title, or a name, to hang my hate on.  I can't hate Matthew's chromosomes-- that is way too personal and feels like I'm saying I hate Matthew, which is just wrong.  I can't hate Matthew's unnamed diagnosis- otherwise known as 4dup25q34.2q--that is just too obscure.  I can't hate Matthew's uniquenesses--they are intimately him. 

So, some days, I just have some 'unspecified' hatred for the hand that Matthew has been dealt. 
I hate that Matthew...
...wants to talk, but can't.
...has struggles because of his lack of thumbs.
...has kids that sometimes are unkind to him because he is 'different'.
...cries so often, but it is an important part of his communication repertoire.
...knows the inside of the OR, the hospital, and the ER.
...has to spend hours upon hours in therapy when most other kids his age just 'go play' and develop as expected.

I hate that I...

...can't imagine a year down the road for Matthew.
...some days still mourn the loss of 'normal'.
...had thought through a funeral plan for my son as he laid in bed in the ICU. a 'special needs mom', who has that now as part of my identity, not just a title.
...don't feel comfortable meeting new people, because when I casually say "I have an 8 year old, a 6 year old, and an almost 4 year old", I know they envision a life very different than the one we lead.
...feel like I should end this post with how much I love our sweet baby Matthew, but hopefully you already know that and that life isn't all rainbows and sunshine.

Some days, I hate 'unspecified' (and Autism too, for our friends). 

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