Thursday, March 13, 2014

What he remembered


Max's teacher recently sent home a bunch of the class's favorite jokes on index cards, and we were reading them at bedtime last night. One favorite:

What did one elevator say to the other elevator?
"I think I'm coming down with something."

Then we got to this one:
Why did the birdie go to the hospital?
To get a TWEETment.

Max pointed to the word hospital. He pointed to his bedroom window. He gestured at himself.

I thought I knew what he was saying, but it was hard to believe.

"Max, do you remember going to the hospital when you were little?" I asked, cautiously.

"Yes!" he said.

He made a whining noise.

"Is that the sound an ambulance makes?" I asked.

"Yes!" he said.

Then he pointed down. And I knew.

"Yes, the ambulance came here and took you to the hospital, and then the doctors made you better," I said, and it was all I could do to not cry.

Somehow, Max was remembering back to when he was 15 months old and he had a grand mal seizure. A very serious, prolonged seizure triggered by a fever that went on for a good 45 minutes until doctors at the hospital finally got it under control with meds.

That morning is the second most traumatic memory I have, the first being the moment the NICU doctor told us that Max had a stroke. Max was sleeping in our bed and I can still vividly recall waking early and realizing he was burning up. Seeing one of his legs twitching. And then, suddenly, his entire body was shaking.

Max had seizures at birth and we'd known he was at risk for them, but he'd been doing well and the doctor had taken him off the medication.

Dave and I were frantic—we both kept saying "Oh my god. Oh my god. Oh my god." I called 911. The police showed up before the ambulance did, and the officer told us to lay Max flat on the couch. We did, with his head on my lap. His eyes were rolled up. I kept saying "Max, Max, Max" and he could not hear me. I thought he was dying. He stayed in the hospital for several days after.

Until last night, I had no idea Max had any memory of this. It was unnerving; had it haunted him, too?

I often wonder about Max's inner life, and what he thinks about. He never expresses concern about his cerebral palsy. He knows he has it, though he hasn't yet asked why. He didn't seem fazed by the hospital memory; he wanted to talk more about it, and so we did.

"You had a seizure and you went to the hospital," I told him. "A seizure is when your body shakes." We haven't yet spoken about seizures. He's on meds to control them, and he hasn't had one in more than five years.

Max looked at me. He pointed to the word "hospital" again on the card.

"Max, you are OK now," I told him. "You take medicine so you don't have any more seizures."

He nodded. He pointed down again. Max likes to repeat things; it's how he processes information.

"Yes, the ambulance came to the house and took you to the hospital," I said. "But you are all better."

Max nodded. We moved on to the next joke.

Before I tucked Max in, we chose a few jokes to load onto his speech app so he could share them with other kids. I asked if he wanted to include the hospital one.

"No!" said Max.

I didn't blame him.

He wanted to fall asleep with the lights on. I went in later to shut them off and he looked completely peaceful.

We will keep talking.

12 comments:

  1. Wow. I often wonder what my son with autism, Bear, remembers. His twin, Hunter, has an amazing memory, almost photographic. Sometimes he'll bring up things from years ago about Bear and I am floored. I always thought it was a twin thing, but maybe when something traumatic happens, it's embedded in our memories. Perhaps Bear remembers, too.

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    1. Allison....
      "I often wonder what my son with autism, Bear, remembers.". Give him some credit, as I am sure you do!! I imagine that Bear remembers a whole lot more than you--or anybody--will ever know!! ;-D
      --Raelyn

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  2. He has you. How wonderful. (when we look back at our lives, it's amazing what we have survived) Love to you both.

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    1. Alexandra....
      "When we look back at our lives, it's amazing what we have survived.". So true, so true!! ;)
      "I think it's miraculous that anybody survives themselves." --Robert Downey Jr.

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  3. Ash, now almost nine, still has traumatic memories from infancy. He's got an eidetic memory, so one can't really argue about the impact of trauma....he has all sorts of random memories that go back that far. Still, it's always a different sort of stunning, when we're hit by his bringing up a memory like THAT. We're at the point now, at least, where we can discuss these things with him, and both contextualize them, and use them to help him contextualize other things...

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  4. Ellen....
    What a heart-wrenching, grippingly emotional account of Max's grand mal seizure. I cannot even imagine the thoughts, feelings, and emotions that rushed through you.... I cannot even imagine.
    "Until last night, I had no idea Max had any memory of this. It was unnerving; had it haunted him, too? I often wonder about Max's inner life, and what he thinks about. He never expresses concern about his cerebral palsy. He knows he has it, though he hasn't yet asked why. He didn't seem fazed by the hospital memory; he wanted to talk more about it, and so we did.". And to think that Max remembers that horrifying experience.... Wow.
    --Raelyn

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  5. What a beautiful moment for your guy. It's wonderful that he remembered even though the event he remembered was very traumatic for him. Love the connections he is making.

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    1. Musings From Me....
      "What a beautiful moment for your guy. It's wonderful that he remembered even though the event he remembered was very traumatic for him. Love the connections he is making.". That Max is one smart kid, huh? ;)

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  6. He is strong to remember that, but not be forever scarred from it.

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    1. Anonymous....
      I can't but agree!! Max is a strong, brave, resilient boy for sure!! ;)
      --Raelyn

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  7. Wow! That was an amazing post. When my son was 6 he dictated a story to his teacher about an angel that helped a little girl learn to breathe. He was on a ventilator for over a month when he was born. I couldn't help but wonder if there was some truth to the story...

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  8. Ellen, thank you for sharing this. I'm learning, as someone relatively new to this blogging thing, that some of the most beautiful posts come from describing some of the hardest moments. Thanks for the courage to share this. We are all rooting for you and Max!

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Thanks for sharing!