These have been anxious days, the sort that make me cling tight. The summer brings back memories, memories of loss and things gone wrong. Heat shimmers and I think of a newborn in the hospital and my father's grave with the red dirt turned up and hats off on a dusty road to the cemetery. So many tears shed in the summer heat.
Jude's medicine is making him sick. We were trying to help, help the anxiety and obsession and the no sleeping that comes with this unwelcome gift called autism. So far no medicine has been worth the side effects, the shaking, the dull eyes, the sleeping all day. I feel caught in the worst conundrum, treating my son like a recipe that just needs tweaking or leaving him with anxiety he cannot bear.
We were back in the ER last night, and they had to take blood. The nurse was filled with compassion because he, too, has a child with autism and understands not being able to fix the abject terror that overcomes someone who cannot sort out your words or make sense of your facial expressions. Don knows I cannot stay, so he tells me to go and I am not quite down the hall when the screaming begins.
The chapel is empty and I move past the quilts filled with the names of babies parents only got to hold once, past the religious pamphlets and sheets of paper with comforting scriptures on them. I find the book where people write their prayers, their pleadings, and write HELP ME GIVE HIM BACK TO YOU. I flip through this big book of sorrows, and see where I wrote the same thing twice last year.
This love, this clinging, desperate guilty love, is doing us no good. Jude has a life to live, a good one, if I can release him to it, and if I love him more than myself, he has some beautiful damn stuff in store. He isn't here to meet my needs, but to fulfill his own purpose, one that belongs only to him. Holding him to me won't fix whatever went wrong, whatever hurt his brain. The smartest doctors in the world can't explain it to me, nor can they convince me it isn't my fault, that I didn't break him somehow.
I remember my father hanging on in a fitful coma for days after his heart attack, and me, barely out of my teens, whispering in his ear that I would be okay. It was an act of unselfishness, I wanted to beg him, no, don't go, stay, please I need more, but I let him go. And he left.
When we got home Jude curled up on the couch next to our bed. I sat next to him and held his hand. "Do you remember," I ask, "when you had no words? And Mama prayed to hear your voice?"
"We are making up for lost time, Mama," Jude says, clear as day, and this moment of clarity shocks me, and yes, God yes, we have lost time, time lost clinging and not trusting, time lost to fear and selfishness.
No more clinging, just letting go, and maybe a little dancing, and running, and maybe a little waving goodbye.
1 comment:
I'll be visiting my brother's family in a month or so, their oldest boy has Asberger's, and it's been an uphill climb for them. I feel guilty a little, I haven't been to able to visit in a couple of years, and as it is, if my visit to his area wasn't work related, I wouldn't have been able to do even the 3 days or so at their place that I'll have skive off the business end of the trip. We've watched the progress, and the setbacks, and the turmoil, and the endless extra work to make his life somewhat livable. We can send all the good wishes in the world, but the heartbreaks and work is all on them - they've made it so far and even tho he's not a social animal in the way I know they'd like, he gets better with time. Keep up the insight and understanding, I think it's been their salvation, too.
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