“How I forgot that today was the four year anniversary of our Autism Diagnosis”
I took Everybody’s Boy to the polls with me to vote and he was a rock star. He told the volunteer that handed him the ballot that we were ”here to vote against the “robbers”. which made my liberal heart go all topsy turvy.
We went to baseball afterwards. It’s a great thing, a team for children of all ages with developmental disabilities. Yet even there sometimes I feel like a misfit. Today another child approached me in tears because EB was screaming that everyone was a bully at baseball. I had to explain-defend-apologize-make better the situation, leaving me feeling sick because this child was in pain because my child was in pain and the whole thing was just…sucky.
With lots of tears and laying on the ground rolling in the dirt (him, not me, but I feel it’s prudent to clarify) we made it through the tough spot and I was so proud…proud that we hung in there….even though it was really really hard.
Daddy was at school today. His very last day of classes. He’s now a bona-fide EMT (or ambulance medic in EB speak). I’m really proud and really scared and really confounded. I’m so grateful he’s found a career that he excels at and that suits him. But I have no idea how we will do this with he and I both working full-time. We have a wonderful support system in Gus’ parents and EB’s developmental therapist, Cassandra…but a long summer awaits light on services and support, little money for therapy/camps/anything and what happens when we are both gone 40 hours a week?
Also, I really really just want a week…or a few days…in a hotel room with my boys. Just us. I don’t care where it is. I just want to get away from here. I want to sleep and play and not have therapy, or work, or school, or bills or anything to think about. It’s not a possibility. So instead, I took time to dance in the rain today…just like I would’ve at home.
Home will always be Florida. It’s been over four years we’ve been away. We left to come to NC and we never went back. It’s been the best decision we could have ever made to move our lives here. I would not change it for the world – but I never thought there wouldn’t be room for even a visit in all these years. It’s too hard to fly with EB. it’s too expensive, we don’t have the time, there are numerous excuses…but sometimes, when it storms like it does today and I find myself running outside barefooted and fully clothed to allow the water to pour down my hair, my back, my face – washing the tears and renewing my soul…I just for a minute forget that I’m not in Florida….that I don’t know when or if I’ll ever be in Florida for one of those thunderstorms I yearn for again.
We went to free comic book day and scored some goodies before the live band spooked the boy and then came home to incessantly google Super Mario Bros characters and create a book. While making the Mario book with EB this afternoon I felt a wholeness that had been missing for so long that it actually stuck me with a flood of emotion. My child and I bonded and played and I didn’t think about Autism or money or what the future has in store. I was present.
I forgot to remember.
I forgot to remember that today is the four year anniversary of EB’s diagnosis.
I didn’t realize it until after Gus got home, as we were talking about the merits of ordering takeout Mexican food in honor? of Cinco de Mayo. I remembered that Cinco de Mayo was our diagnosis day. A day that I typically dread upon it’s approach – a day that I analyze the progress of the past year – a day that I allow myself to feel whatever I want to/need to feel to make it through the rest of the year.
And I forgot!
That’s pretty awesome I think. I lost myself in my child so much so that I forgot to remember his Autism.
Have I reached some new level of existential nirvana? Or is it possible that it really is just another day?
Shortly after I posted on the EB Facebook page how excited I was that I “forgot” and how amazing everything was…reality hit. There was a meltdown, it involved a box of Cocoa Puffs being strewn around the kitchen, and a bite to my head resulting in a mouthful of hair, and while I regrouped and kicked myself for not “knocking wood” the popcorn ceiling in the bathroom (and everything else) being soaked with the handheld shower head.
By the time Gus got home with the Mexican food I had barely pulled myself together enough to get EB diapered and dressed and in bed.
I laughed sardonically at how I had forgotten to remember the autism.
He’s asleep now. It was a hard day. In fact it was probably more “hard” than “fun” but somehow the fact that there was cause to forget gives me hope that I might be able to remember to forget more often.
Happy “Cinco de Mayo”. I think I’m going to see how that two-hour old Mexican food tastes and watch a movie with my husband. Maybe I’ll even celebrate my amnesia just a little bit.