However, the worst part of her experience was the way everyone treated her changed so dramatically once she got sick. It wasn’t a deliberate change and it wasn’t negative - everyone was really nice to her. They treated her with kid gloves and kind intentions but her Cancer was always center stage. She wasn't Patty anymore - she was a perpetual patient. Well...maybe for everyone else, but nit for me.
I’ve been blessed with several things in life. Among them is a disturbingly dark sense of humor, which I often employ to help me navigate overwhelming emotions. I’m wildly irreverent - definitely not for everyone - but my mom appreciated it and I loved making her laugh. She had a great laugh: joyful and infectious. Time has stolen my memory of her voice and the way her face looked outside of the pictures I have, but sometimes I can still hear her laughter in my dreams.
The first time I called her, Cancer Ass, was, loudly, in a very crowded Chemotherapy Center after an infusion. Immediately after, flashing my deepest dimples to the aghast patients and staff, I helped my mother get her coat on. She was having trouble, not because of the chemo, because she was giggling too hard. I immediately joined her, as did...about one third of my unintentional audience. The rest were distinctly unimpressed. Like I said: I’m not for everyone.
From then on, Cancer Ass became my occasional pet name for her. I inscribed it in books I gave her and wrote it instead of her name on cards and letters I sent. The latter lead her to an interesting interaction with a concerned Postmaster, but that’s another story altogether. ‘Cancer Ass’ made her laugh every time, just one of the many ways she and I laughed at the horrible disease that was stealing her life. The alternative was unimaginable misery. Laughter truly is the best medicine - even if it can’t always save you.
>>>>> 7 years >>>>>
The day my baby was diagnosed with inoperable ROP, that would eventually take away the little sight he was born with, for a moment, I felt like I would never laugh again. I was, woefully, uneducated. That first day, his diagnosis felt like a death sentence. I couldn’t imagine a world where being blind would be ok for my precious baby boy.
I remembered who the fuck I am.
I didn't bow down before Cancer. I’d be damned if I did it for a lil’ ole disability.
As soon as my son was old enough to understand I told him that his eyes were broken. I’ve received backlash from blind adults, who find offense with my terminology. I’m ok with that. My boy was two years old and had a relatively narrow world view. He understood the concept of ‘broken’ as in ‘doesn’t work’. My Not-so-Little Dude is one smart cookie, but the finer points of Retinopathy of Prematurity were a bit beyond him at that point.
Soon after that I changed the words of ‘Sweet Child of Mine’ for him.
“He’s got eyes that can barely see
Oh, I can’t tell you what this child means to me
He is my babe and his smile is bright sun sh-i-i-ine.”
You get the point. Right from the get go, we put blindness in its place: in the backseat.
Is it there? Yes.
Does it suck? Kinda.
Does it get to make important decisions? Oh, my stars. Heavens. no.
Are we going to treat it with any kind of respect? What the fuck do you think?
Once, when Gabriel was 4ish, I asked him to hand me the blue towel. Upon realizing my mistake, we laughed and laughed. After the laughter, we had a good discussion about colors (which he couldn;t really understand - never having seen them) interwoven with facts (the sky is blue), emotion (generally speaking, blue is a cool, calming color), science (blue is a primary color and copper chloride makes fireworks blue), psychology (the blues is a casual term for sadness or depression) and pop culture (Dude...B.B.King). My sweet child might not be able to pull up the visual for ‘the color blue’ but he gets it. He really does.
Since then, we’ve laughed in the face of everything: bullies, bitchy teachers, broken bones...all of it.
The result: not only is my kid, wickedly funny he’s comfortable with who he is. He’s comfortable with his disability. Obviously, it’s not ideal, but sometimes it just is what it is. You gotta play with the hand you’re dealt. Everyone gets a choice: you can laugh, or you can cry.
I know what I prefer.