Unamusing musings

Plodding along with C. Daily assisted walking, weekly hydro and now, intensely working to get her pushing the "button" independently. Not there yet, as you see in the clip below, but we're optimistic:

I just read the jarring news of the death of Cameron Boyce, a Disney actor who died in his sleep following a seizure at the age of 20. While my daughter C.'s seizures are horrific, distressing and all similar adjectives, I never fear that they're also lethal. 

My concerns are that they heap fresh damage on her already-ravaged brain and that they occasionally render her ragged and non-functional for hours. 

But I never consider that they could do worse than that.

Apparently I'm not alone in that misconception. It's common even in the epilepsy community. You can read more about epilepsy fatality and how the medicos kindly contribute to our ignorance of it here.

And as long as I'm in pondering mode: 

I wonder how many of you have friends or relatives who you are pretty certain consider you nuts for devoting yourselves to keeping your sick children alive. You know, folks who think: "Why do they expend all that energy, money, time and emotion on a child who has barely a modicum of "quality of life"?

Well, I've got a couple such people in my circle. 

One had a brother who, in his forties, suffered several mini strokes that left him severely incapacitated for years. Then while lying in bed he somehow broke a leg - although he wasn't mobile. Despite several weeks in a cast, the leg failed to heal. The doctor told my friend that it needed to be amputated or he would die from gangrene. She asked this doctor, who wasn't actually the one treating him, as that one was away on vacation: "But if the leg didn't heal from its break won't it fail to heal from an amputation too?" As my friend related it to me, the doctor replied "That's right."

That was her brother's death sentence. Because then and there my friend decided that amputating was pointless especially since he had no "quality of life" anymore. She placed him in hospice care to await his end, which she was told could take up to six months. 

I didn't intervene because I figured she wouldn't take kindly to it. 

Shortly afterwards, his G-tube fell out and the hospice nurse told my friend that they couldn't replace it. That could be done only in hospital but, the nurse warned, if he would be hospitalized, he couldn't be readmitted to hospice. So my friend decided to leave him to die of starvation in hospice!!! Without even giving him fluids!! 

This time I did intervene and asked how he could be denied even water. Well, he could, and he was. She flew to the US to be there when he died. She told me he was "very focused" whenever his nieces and nephews Skyped with him. I take that as his conveying a will to live. But nobody was listening.

Then there is this neighbor/friend who had a Tay-Sachs child who passed away at the age of four or five. When C. first became ill and epileptic, that mother told me that her child's doctor had advised her to "get her daughter out of the house" when she began seizing. She dutifully did that, sending her to a hospital in another state. 

Bear in mind that everybody knew full well that the child had a short life expectancy. 

Well, the parents rarely saw her after that. But fortunately, the child had a compassionate grandmother living in the same city as that hospital. The grandmother once told me that she would visit her granddaughter daily and took her for walks in a pram she redesigned to accommodate her. (This was some forty ago and disability equipment was still primitive.) She said the nurse told her "This child has survived as long as she has only thanks to your daily walks with her."

I wonder what that neighbor/friend thinks twenty-three years on when she sees me with my C., still alive, still at home, still loved.

We don't speak much anymore.