Sunday, March 27, 2011

Just Keep Swimming, or Dust Part 2

I don't know how to be okay. Heather tells me about mindfulness, which is, I guess, a way of keeping yourself from completely freaking out. If I am making a cup of tea, I am making a cup of tea. If I am putting on my shoes, I am really focusing on my shoes. Nothing else.

I try not to look at the lake, the waters are dark and they scare me. The drive to the hospital to see Jude is cold, and silent. Duran Duran's Come Undone plays on repeat on my ipod. Don doesn't seem to mind this new obsession. When Eden was bad I watched Korean pop music videos night and day. He has given up trying to understand.

Warm beaches. fashionable people. No one is sick. I live in Chicago, I have dreadlocks, and I have not shaved my legs for two decades. Duran Duran is about as incongruent as it gets. I love it, John Taylor is perfect. I devour every article, every interview. He is intelligent and thoughtful, talking about art and music and recovery. "Absolutely," I say to myself. John Taylor does not live in a commune. He does not stand in line for dinner, he does not dig through donation food or argue about whose turn it is to vacuum the hallway. He does not have to start IV's on his children or worry about blood born illness. He drives a Range Rover. A green one.

We are there. Jude is happy to see us, but wants to go home. He asks us, again and again, and begins to get agitated, and we have to go. They have to put him in the 'quiet room', and they have give him Haldol, and they tell me that he now has a heart condition, from the medicines they have been giving him.

This is hell. We are in hell. There are no beaches, no yachts in hell. I am in hell.

God is not good if Jude has to suffer. Give it to someone else, God, like some guy who says you hate queers or a child molester. Me, give it to me.

Prayers go unanswered and I throw up in the parking lot. I listen to Duran Duran and I speak to no one.

The next day Jude is better. Just a little better. I crawl into bed with him and we fall asleep for hours, wrapped up in one another, and Don sits by us. It is like when he was a baby, and I held him while he slept, milk drunk and loved, not a care in the world.

We are going home. Home. He can come home with us. We hurry to the car in case they change their minds.

He is screaming. Furniture flies, glass is breaking. The meds are not working. We cannot control him. I do not want to go back. God help us, we cannot go back. It has been suggested that we may have to put Jude in residential care. He is eleven. GOD, HE IS ELEVEN!

I have worked with Jude. Too many hours of therapy, blood, sweat, tears, flashcards to count. I was always told he was making progress, that he would someday be able to live on his own, have a life. Now puberty has hit, bringing seizures, migraines, and rage. I should have seen this coming, they seem to imply. This could be the new normal.

My friends, the people I live with, they don't want to say it. I know they are scared by the meltdowns, by the screaming, by my bruises. They would never say it, but Katherine does. She cries as she holds my hand. "We may not make it. He may not be able to be safe here." She is right. If I have to put Jude in a group home, I will die. It is that simple. I will die.

We go to play therapy, where Jude comes undone, because Wendy and Don are pushing him. I hate them both, and I go to the parking lot, and when I come back in, Jude is punching himself in the head and Wendy is about to call 911. I speak to him soothingly, and promise him soda, and Don takes him to the car. I sit on the floor of the center's waiting room. Wendy asks me to come in the office. I shake my head no. I refuse to move. She asks me if I am okay, No, I tell her, I will never be okay. Never again.
God is cruel, I tell her.

The very thing that has saved me from drug addiction, despair, and given me life and breath is now untrue. It will never be okay. Never again.

Wendy will not let me go home until her I promise I am safe.
I go home and look online for residential care services for autistic children.

The next day we are back in the ER, because Jude is having yet another uncontrollable meltdown. The pysch resident is talking to us, and Jude steps over to him, and pats his red hair, and says, "You have a pretty head, like Eden's."

I burst into tears, and beg him, oh, God, please help us. Please, let me take my baby home. This can't be it, this can't be true.

He looks at me, and I realize he is just a kid, like all residents, and he calls his attending, and they adjust Jude's meds, one more time. Just one more try.

It works. We go one day with no screaming. Two. A week. I breath. Jude smiles. He laughs. We are careful with him, we don't try to send him to school or make him button his own pants, but we start to see him smile, and his speech improves, and oh, my, god. The drugs are working.

Jude is watching Finding Nemo for the fourth time today. I am Marlin, anxious and controlling. Don is Dory, cheerful and forgetful. I watch it with Jude, while I check to see what sexy British bass players and their fans are up to. Jude is sorting out his stuff, using Finding Nemo as a template. I am avoiding my stuff,  because it is a bit too raw, and I know what is on the horizon. This is but a respite, and there is bleeding, screaming, letting go to do. I am asking that my friends believe for me. I am trying to be mindful, and I am asking for a little grace, a little mercy, please God, because after all, I am yours, but I am only dust.


Anonymous said...

Oh, Rebecca Smith HIll... love you so much. I am so grateful for the rawness, for the realness. Thanks for baring your heart again... it moves me every time.

ME said...

Oh dear Girl, precious mama,
Thank you for sharing your agony! So few do, they try to look pretty while suffering. I fight the tendancy myself but am convinced it is the enemy who wants us to isolate. Grief is not pretty. I am tapeing Jude's name up all over my house so I can remember to pray...Life is hard but God is faithful. Trusting with you that God is making a way through the hard for you.
I am so sorry, I am so sorry!
You are LOVED!

ME said...
the Lord keeps bringing you and Jude to mind..I am praying..I liked this devo..thought you may too...I keep thinking of you beating the breast of God...Thinking He is cruel...It is good:) He can handle it...
Also if your not afraid of having me as an official stalker I would love to have your e-mail:) Let me know And I'll post my e-mail here and then erase?!

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