Sorry,

I’ve become something of a nervous wreck. More so since yesterday. Suddenly, I have to get my son back to Pittsburgh for proper, safe treatment. We can’t afford it. But - something has to happen.

I keep flashing back to last year when we had our first run in with the NHS. I keep remembering Winston - thin as a famine victim - and the refusal of the doctors to treat him.

When I close my eyes, the image of him passing in and out of consciousness in front of them. Hearing their proper, imperious voices insisting that he simply sleeps.

I can almost feel the rage tightening my bones so stiff it felt like they would snap, when I demanded an I.V. My mouth becomes sticky and flat remembering how they eventually gave him an I.V.; drew blood and informed me hours later that he was probably 2 hours from kidney failure.

So sorry, they said, he may have some long term kidney failure. He just presented so well.

Presented so well? You mean he is an above-average kid hell bent on survival? Meaning, he has above average language skills? Meaning, he is a kid who has been given good reason to believe that the adults in his life love him and will care for him? Meaning, we have earned the ultimate trust he has placed in us? So he doesn’t have to scream, rage and carry on? Presented well? Those fat cheeks reduced to hollows? Luminous, fevered eyes? Bones showing through his torso, arms, legs, begging, begging for juice, water, breastmilk? Vomiting or passing it within minutes? This is a child who presents well?

I return again and again to trying to get the G.P. to test his urine and recommend us for an ultrasound of his kidneys. I’m trying to follow up on the damage they may have done to him. And no, his urine still doesn’t smell right. Yes, tests have not been given. It has been a year and we still can’t find out one way or the other whether or not they damaged him for life last year.

Then, I imagine submitting him into these hands for a surgery I do not want. What if I say, his breathing looks off. Or maybe, I don’t like the look of his eyes. Or maybe after the surgery, I say, He can’t identify the number 8.
What will they say to me?

You’re overreacting. He’s too young to do these things. That’s what they’ll say. And they’ll send me home with a brain damaged kid with no upper teeth until he is 7 or 8 years old.

Because, when it comes to the medical treatment of my child I know:
+ not to over react;
+ to research all aspects of the problem;
+ to engage in an intellectual, detached, almost clinical manner with health practitioners;
+ to suffer necessary treatment with a calm smile so he feels relaxed;
+ to make the giving of health care easy for the practitioner.

It is a cold, hard place to find within oneself. Every mother feels each wrenching bite of pain their child experiences. It is as if the ghost of an umbilical cord forever unites our bodies.

I do not overreact. And they will claim that I am after they have damaged him.
For financial reasons, they will end us home...

and they’ll say, Sorry. Because that word fixes everything here. It is used so often for everything from trying to get off a bus to smacking someone in the face to almost killing their child. It is a meaningless social code which really means, I am now absolved of any responsibility for damage I have done you.

This is the National Hell System.