Friday, December 18, 2015

Dear autism

Dear autism (and cerebral palsy, too),

I hate that you steal.

Today after The Hubs got off work our little family went to a local theme park because we were given passes this year. It has been a long semester, and this was the first time we were to go during the Christmas season. We rode all the little kid rides that Bug and Bubby wanted to ride. Except the train because we knew Bug wouldn't handle the wait even though he LOVES the train. We had planned to watch the Christmas parade. Bug loves the 4th of July parade we go to each year, and he loved my home town's homecoming parade this fall, so I knew he would love this. But autism, you stole that potential experience from my sweet boy. During the wait he had a mini meltdown, and we had to make the choice to leave before the parade. I watched both my boys miss out, one crying because of something being off in his world and one because he was missing out on something he really wanted to do.

This isn't the first time you have stolen from us. You steal from us on most Sunday mornings still, when either The Hubs or I have to take Bug into the cry room at church. You steal from us when you make it impossible for Bug to join his peers singing on stage, and you steal from us when one parent stays home with Bug while the other goes to watch Bubby in a choir concert or church musical. You steal these big, special moments and the little moments, too. You steal moments which should be used to linger and peruse longer at the library, moments when Bug can't keep up on the playground or on Wednesday night game times, moments when other little kids ask me, "Why are you walking him down the stairs like that?"

But you have given us some gifts, too.

You have given us the gift of celebration. We celebrate every milestone - using the slide, navigating some stairs, saying hello to a peer, decreased echolalia, and maneuvering a spoon. You have given us the gift of perseverance and prayer. You have taught us to pray without ceasing, to wait even when it's hard, and to hope even when the "experts" have not understood.  You have given us the gift of showing us that we have some wonderful true friends - those who still meet us at the park, who understand our crazy schedule, who don't mind talking at length about Veggie Tales, who aren't afraid of drool on the couch or an outburst of tears from a child or his mom.

You have stolen some moments and some abilitilies. You stole the end of our day, but we still look at all the wonderful memories we made today freezing our butts off riding a fake dumbo and eating a funnel cake. You gave me the gift of seeing how much character and maturity my six year old has and the depth of love he has for his little brother, when many other children would have pitched a fit while yelling hurtful things. In a strange way, you have given us the gift of being a strong family, though I know our strength is not of ourselves but because there is one who makes us strong even when we are weak.

Oh Autism and CP, you haven't stolen everything, and you will not steal everything. Not one single ounce of love for my sweet boy will ever be stolen from my heart. Even if you disappeared from his life tomorrow, my love would be the exact same amount. Because there are some things nothing or no one can steal.

Bugaboo's Mama

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