Friday, October 10, 2014

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else...please go away.....

Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with,

Please go away, just for a month, week, day, oh heck, I'll even take an hour!  Don't get me wrong, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, you have made my children into the strong, amazing, artistic, little human beings who are full of love and giggles. 

That doesn't mean that I don't ever think about what they would be like if they were just typical little boys with typical little friends in a typical little school, eating typical little human food without, on typical little playgrounds playing with typical playground equipment all while convulsing, shaking, screeching, kicking, hitting, throwing things, throwing themselves, meltdowns that last hours over nothing at all,  hives, and all that other fun stuff we deal with on a day to day basis. 

We love all of our therapists and wouldn't change them for the world, they have become friends, family and show their true love and dedication to G&L...that doesn't mean we haven't dreamt (is that even a real word?) of a life with no therapy, running to specialists, blood labs, special needs equipment appointments, etc. My biggest decision used to be which shoes to wear or which shirt my boobs looked better in.  Now I have to make decisions everyday that affect G&L's entire life.  The Hubs and I always joke around that G might live in our basement one day so we need to move into a house with a basement.  We joke about it  because we realize it could very well be our reality one day.  

While we're on it?  Why do I keep saying typical and not normal?  My kids ARE normal.  Normal for them, and normal to us.  What is normal?  Everyone has their own sense of normal.  What's normal for my life, isn't he next persons normal. It's normal for me to want to wear hot pink and leopard print, it's normal for my friend JSM to wear all back, it's normal for my friend GWB to have red hair, It's normal for my friend JAN to have curly hair.  Autism and everything else is our normal, but sometimes it would be nice to have someone else's normal for a month, week, day or an hour.

So, like I was saying, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, has made our boys who they are, but I often wonder who they would be if the world didn't consider them as little boys with special needs, but typical little boys who have lots of love, giggles and smiles to share.

Signed,
One exhausted mama

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