Calm Amongst the Chaos

Many years ago I had a doctor tell me “When you have a child with such severe mental retardation they have many autistic traits.” This was an answer to my “does she have autism too?” question.
Gulp.
I saw the word mental retardation on a report of hers once, but I never heard the words come flying at me like that. No warning, no time to duck and weave or do anything to protect myself from them. And they stung. They stung like a swarm of bees stinging my honey filled ears.
No I am not going into a tirade about the R word. I have been there and done that. On my honor, not where I am going.
Where I am going is what those words in my ear did to me.
They made me a part of me stop believing. I thought maybe he is right. Maybe she is so far gone that she knows nothing. I started to numb myself to any thoughts of her having any thoughts of her own.
He killed her spirit and my own.
Yes at times I would think oh there is more in there, I know it. But then she would totally check out. Ignore anything I said and I would think again maybe he is right.
We have had so many wonderful therapists, teachers, folks come into our lives knowing she has more, and give me hope, but we could never get her out of her world and into ours, so again I would stop believing.
I found myself much safer just caring for her to the best of our ability. Keeping her healthy and safe. But not even thinking of trying to teach her things I was afraid she didn’t understand or care to learn.
I got sold a lie and I bought it. I bought it because I had to protect myself. I am always protecting myself. I have been let down a lot in my life so I have found comfort in just accepting the worse and hoping to be surprised the other way. So I kept with my walls. Walls around my heart, too afraid of my own daughter.
If those walls came down. If I believed in one more thing and it didn’t go as I expected, I don’t know what I would do. So I just refused to let any hope come creeping in again. This was how I was for many years.
Then early this year we had a trial with an Tobii eye gaze system. I dared to hope. Just a little. I asked for friends to pray. And I prayed. And Lily surprised us all with being very receptive to it.
Then we waited. And waited. And waited. Paperwork got lost, insurance info got confused and in all the waiting a new upgraded system became avail and then one day it was on our door step.
I didn’t open the box. I posted a photo. I said “yay, it’s here” I had about 150 likes. But I didn’t open the box. Afraid of what would happen if I opened it and she did nothing.
Finally I opened it. I played a little. I hesitantly showed it to Lily and she surprised me and played a little too.
Then I learned some more. Gave her some more and she took to it again. Some days she liked it more than others. Some days she really liked it. Some days she could care less about it.
But I continue to learn and I continue to play with Lily and my walls are slowly coming down.
She said trick or treat on Halloween.
She said her name was Lily when I insisted it was Sally.
She said no to everything, but yes to chocolate.
And the other day I got brave, let’s see what happens when I put a game of memory in front of her. My inner dialogue telling me, this is too hard, she won’t understand, yet she completed two rounds in about 5 minutes or less. She found the apples and the bananas and the coconuts and liked the cheering for her when she was done. She played it like she knew exactly how to play the game, as if she has been playing for years.
That day, the day we watched our 11 year old daughter clear a 6 image game of memory I learned something myself. Our daughter IS smart. Our daughter is someone worth putting my hope into and our daughter will continue to surprise us.
Laying in bed that night I say to Andrew “she kicked ass in that memory game!” he says “I know!” But Andrew is different than me, he doesn’t hold up walls like I do. He wasn’t as surprised as I was. Yin and the Yang.
Lily is one special girl and I am sorry. I am so so sorry for years of not expecting anything in order to protect myself. She deserves better and from now she will get better.
Expectations are my Achilles Heel. Lily is my Achilles Heel. But I am not going to be crippled anymore by my own fears. I am also not letting an opinion of a doctor who never ran a test, who never even spoke to my daughter make my mind up about my daughter.
I will always have regrets and grieve over lost years of “accepting”, but I won’t let it stop us from continuing on.
She has a new lease on life. She has a reason to stop checking out. She has a voice now. I’d check out too if no one tried to find my voice.
Oh thank you God for technology, and for people who don’t stop believing, and do the believing for those who don’t have the courage to do so.
Lily is smart. Look out, here she comes. You’re gonna hear her roar. Oh oh oh. oh oh oh.