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Apr 11

Nine is hard

I think he’s at the precise WRONG age for all of this.  Too old to be popped up on my hip while I have the conversations with his doctors, too old to be soothed easily with a cuddle and a kiss.  Just old enough to know that if he kicks and screams and rages, he might get out of having to talk to the doctor.  Just old enough to know that crying won’t really get him out of it, that he’s helpless in the face of illness and pain, in the end he’ll end up with the spinal tap, the IV, the eye test.  Not old enough to know, not really, why we have to do this.   Old enough to be afraid of what’s happening, to not know why, and to not understand what happened to his life.

Nine is the wrong age for this.

Every age is the wrong age for this – I know that.  There’s never a good age for your child to ask for a wheelchair because he can’t see well enough to navigate thru the hospitals halls and up the elevator.  There’s never a good age to have to use a combination of cajolery, bribery, stern voices and lecturing to get him through an eye exam, when he’s begging them to stop shining lights into his sore eyes.  There is never a good age to ponder permanent vision damage, to see his eyes not focusing.  There is never a good age to realize that your child is losing his childhood innocence, he’s understanding pain on a level that no child should.  He realizing that Mama can’t always fix it, and I hate that.  I hate the wisdom I see there, the knowledge that it hurts, bad, and he and I both know that there’s no way out.  He just has to hurt until the pain relief, the pitifully inadequate pain relief kicks in.

He’ll get better.  He will.  I’m never unaware that a pseudo tumor is, in fact, a fake tumor.  It’s not a real one.  But the reason that it’s called that is because the symptoms mimic a brain tumor.

I’m just going to leave that paragraph alone.  My son has symptoms of a brain tumor.

He’ll get better, I cling to that.  I cling to the doctor’s words, and ignore the wince on their faces as they try to phrase it in a way that’ll make me feel better without giving me false hope.  Most kids make a full recovery.  Most kids don’t have permanent loss of vision.  I track the medications and pop the pills in his mouth every night and every morning.  Hoping for a miracle, hoping today is the day I’ll get my boy back.  Hoping he won’t cry, hoping he won’t tell me how much he hates this, how much he just wants to be normal again.

Nine is the wrong age for this.

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