Day In, Day Out, Chubby Cheeks and Curly Hair Fill My Heart

Little Angel had an MRI (of his brain) today and before we’d even returned home his neurologist had e-mailed me letting me know the results were GOOD.

He is a freaking champion. He requires general anesthesia so can’t eat anything beforehand, and this is a boy who loves and lives to eat: it’s soothing to his Sensory system. On the considerable drive to hospital he was yelling at me, wildly smacking his hands together, and I knew he was telling me he wanted to eat. As we entered the hospital he loudly yelled out and I pushed him right up to the check-in announcing “Little Angel’s here!”

He’d undergone some deterioration over the summer so his neuro team convened an “emergency” meeting in August. His (primary) diagnosis of Penelope Syndrome / ESES (encephalopathy status epilepticus during slow sleep) was rescinded and instead he was assigned the medical appellation “medical enigma.” I joked about how back in the ‘90s when a grad student in Monterey, California I really liked the band Enigma, but truthfully, both Little Angel himself and his medical issues are confounding, so this is an appropriate term. For a while now I’ve been furious, I mean crazy-angry with other parents I’d found online whose children have Penelope Syndrome: none of their children presented like Little Angel, meaning they still had their ADLs (Activities of Daily Living), and none of them had absolute global aphasia. They may have lost some language skills but by-and-large they were still fine, still able to participate near-appropriately. And now I don’t need to be angry, I don’t need to be green-eyed monster jealous.

When school resumed in late-August his team there all noticed his deterioration, and at first I found succor in that, like “others see it too!” But then I visited and interacted with some of the other also-seriously and multiple disabled children and saw that quite a few of them had made improvements and I felt sad for Little Angel and for our family.

I’ve spent my life as a devout atheist; the Hirsute Japanese (aka my husband) said he was always an agnost until Little Angel’s catastrophic regression, and then he immediately became a hardcore atheist. He was always an atheist but I think such a declarative made him uncomfortable – he barely likes to say “I love you.” With the shit we’ve faced these past few years but really in specific this year I started a serious inner conversation about faith and theism: I found myself feeling there must be a god and it must really hate us to have given us so much heartbreak and heartache.

Kubler-Ross has the five stages of grief but I really live in a world of three: anger, depression, and acceptance. In early-August we found a lump in my breast and I was scared. I started writing letters to the children for the future, writing detailed notes of provenance for all and sundry. From the specialists I received first a “most likely positive,” meaning it looked malignant but more tests were necessary. I am insanely lucky in that those further tests resulted in a definitive negative. One of the MDs posited that it could be as a result of weight gain / stress / age. Ha ha because none of those are going anywhere anytime soon. We received the happy results on a Monday and then that Thursday was Little Angel’s emergency neuro visit where, after watching his deteriorating gait they wanted to test for Parkinson’s and look for brain lesions. I nearly resembled one of the three monkeys I so desperately wanted to clap my hands over my ears. But I didn’t. I listened but did the smartest and most un-me thing ever: I chose to do no research on either of those until we heard a definitive diagnosis. Life is shitty enough without adding the freak-out of “oh my god my seven year-old might have Parkinson’s!”

He doesn’t. He remains his own unique self, one we cannot figure out but hot damn he is just adorable. He is physically beautiful with his chubby cheeks and long, curly hair, engaging smile and desire for cuddles.

The HJ made a celebratory dinner of (vegetable) tempura which we all adore and of which I eat too much … and then wonder why I don’t feel good. But it’s worth it.

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One Response to Day In, Day Out, Chubby Cheeks and Curly Hair Fill My Heart

  1. Johanna GGG says:

    I am glad your god had given you a small reprieve – you need and deserve it! Thinking of you.

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