If he would just stop, stop screaming, stop throwing things, stop struggling, just for a moment, I could hold him, I could rock him, I could whisper in his ear that he is okay, I love him I'm not mad, just let me hold you and smell your hair and it will be alright.
The medicine that was supposed to bring sleep has done the opposite. Jude is flinging himself against the wall and shouting at the top of his lungs. Sleep. god, we just want sleep. it has been so long since we have had sleep or even a moment to breathe, just to be.
Have you ever been tubing? A boat pulls you through the water while you hang on to an inner tube, bouncing and twisting and hitting the water while you cling for dear life. That is what this week has felt like.
Last night while Jude was screaming and tossing his (and our) things about I went and sat in the kitchen. Eden came and asked if he could tell me a secret. He whispered in my ear that sometime he gets mad at Jude.
Me too, I told him. Then he whispered that sometime, just sometimes, he wished that Jude didn't have autism.
I hugged him and cried silently, and Rachel walked by and noticed I was crying and brought me some tea, and eventually Jude calmed down and I lay next to him, kissing his head and telling him it is okay to be angry, but please don't break stuff, and he sniffles and says sorry, sorry, I'm sorry Mama. Jude Hill was afraid of the parts. What parts? I wish I knew.
He falls asleep and I pray, silently, and try very hard to just stop flailing, stop struggling, stop fighting, and let the lover of my soul comfort me, and tell me everything is okay, and it will all be alright.
Wednesday, June 16, 2010
Tuesday, June 8, 2010
Don has a migraine again. Every Saturday. I wish we could figure out what we did on Friday that makes him incapacitated every Saturday morning. That’s it. No more fun on Friday night. Apparently, diet soda and medical shows are harmful to your health.
So I get up with the boys, who are hungry, well two of them, anyway, Sage is sleeping in like a good adolescent. I make eggs and pop tarts and we play ball in the yard, and Gramma, bless her soul, has made me coffee, which will help me get through the next hour anyway.
When Don gets up I ask him to wake Sage so I can do his infusion. Every day Sage has to wake up and put a needle in his arm and we put back what genetics denied us, Von Willebrand’s factor and some factor eight. It is a hard thing to wake up to, but he’s gotta have his Vitamin VWD so he can move around somewhat normally. It is just what hemophiliacs do but we are new to this and while I do not blame Sage for the drama that ensues I have to be mean, very mean and make him do it.
Somehow we get it done and Sage and Eden are off to bass and ‘Making Monsters Art Class,’ respectively, and Daddy takes them because Mama does not wish to lug the amp.
Gotta love scholarships and sliding scales. Now my kids are enriched. They leave and I turn to Jude. He has a look in his eyes that tells me he has plans, probably for shredding paper or throwing stuffed animals out the window, but he and I are going to do flashcards because Emily the autism expert told us we have to learn about a hundred sight words. She gave us a list at the open house Thursday night. I am committed to getting it done for my son’s education and his future, and because I want to redeem our family image after Jude shouted MY UNDERWEAR IS ON BACKWARDS at the top of his lungs during the principal’s speech.
Jude is looking at the ceiling, not his flashcards, and I have to figure out what he is looking at and get his attention or he will never learn to read for God’s sake, so I get behind him and look up. There, hanging from the light fixture, is a little brown blob.
"Hamster!" says Jude.
Actually, it is a bat. I am thrilled and I yell for my neighbor Tom and get a bin. Tom bumps the bat into the bin with the lid while I yell around about rabies. Tom snaps the lid and hands it to me.
This bat is the cutest thing I have ever seen. He is about the size of a chicken thigh, reddish brown and he stumbles around the bin, looking like I felt this morning. I am in love.
"Hamster!" Says Jude.
When Don gets home he feeds him some water with a syringe and Sage tries to convince us that we could keep the bat, really, he needs a home, it would be educational and we have snakes a bat isn’t that much more exotic? This turns into wailing and freaking out when we say we are calling Bat Rescue. I get on the computer, and wow, there is really a couple that rescues bats in Humboldt Park, so we all pile in the car to take Mausferatu to someone who can nurse him back to health.
We find the place okay, way on the West Side past the groovy neighborhoods on the Near West Side. This place still has some personality to it and the guy who takes our package says that he is a red bat, and that he will take good care of him. Sage says goodbye and to our relief does not reenact the scene from The Yearling.We go to a local park so Jude and Eden can run off steam, and there are older kids there, smoking and swearing and trying to get pregnant with their clothes on. I think I prefer this to the condo moms with the fertility strollers that have invaded my neighborhood. Don points out that there is very little gun violence among those who drink Evian and buy organic, but I still like being in a place untouched by gentrification, just for a little while.
"Goodbye, Hamster!" says Jude.
We get in the car and ride home, it is dark now, and we are riding through the trendy neighborhoods again, stopping to let gaggles of college kids across the street. We pass open bars and patios and lights strung across the darkness. I remember when I was that age, and I had come to Chicago to help the homeless and save souls, my own most of all, and we would stand outside the bars and the shows with flyers explaining salvation and invitations to church and our coffee house. I felt fine with the winos and prostitutes back in our neighborhood but the kids my own age, drinking beer, laughing, dating whoever they wanted, that got inside my head. I would never admit it, but I felt the pull of the world, what was shallow, easy, fun, it called to me. I would stand on the sidewalk and close my eyes and let the throng wash over me, not touching me. Please God, I would pray. Help me stay on this path. Just help me stay on this path.
That was when I was eighteen, and now I am forty, moving through the night in a beat up van, listening to the delta blues on NPR. This music touches something in Jude, and he starts to call out in the dark, loudly, singing along with the blues, and it is beautiful, and I take my husband’s hand, and it is all good, so good, all the heartbreak and joy and sorrow and love, and I am loving this path, this wonderful path, and nothing could make me stray from it, this long and bumpy trail. It is our story, a very good story, and I want to see how it ends.
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