Tuesday, May 18, 2010

a long illness

A long time since the last post. Coming to you now from a new laptop; moving through a very challenging time, into another kind of challenge...

My son has been quite ill for the past two weeks. It seems so much longer. He will recover, slowly. It's a more serious illness than any we have experienced before, an immune system malfunction triggered by a run-of-the-mill viral infection. He has experienced all kinds of pain, rash, swelling of the joints, some of his organs have been affected, etc. I have told the story already to many caring individuals, so I won't spend much time here on the details of the illness itself. Tomorrow I'll accompany him to school, his first day back in weeks, and we'll stay half the day, and hope it's a good experience. This chaperoning is for him -- for his sense of security, and because some of his symptoms come and go and require attention. He's improving, but he still tires easily -- he's not really ready to go back, but it's been so long that I want him to at least glimpse the old routine. Hopefully, soon, he'll be completely well. Hopefully, his nervousness about going back will calm. His illness came on suddenly, while at school, and I know this was frightening for him.

And for his parents.

We have seen him lose weight, from repeated bouts of vomiting and diarrhea, and this is distressing particularly in a child so young and already growing faster that his body fat seemed able to keep up with. He's bony now. His arms and legs are sadly thin. It's alarming. More so because he had a haircut today and his father trimmed it quite close -- now his look of illness is pronounced, in my eyes at least, and it's heartwrenching. I have lost night after night of sleep -- for days, neither he nor I slept more than two or three hours at a stretch, at most. Pain would wake him, nausea or cramps would wake him. After a time we lost track of the days. I was only at work as much as was necessary, switching off with his father during the day depending on who had the more pressing need to be in the office. My son needed me.

His father suffered from the helplessness that grips a man when he sees that his sick child prefers the mother's constant care. He struggled not to take it personally. He did load after load of laundry, not his usual chore, keeping himself busy. He slept night after uncomfortable night in our son's small bed so that the boy and I could share the big bed, where I could assist quickly as needed with back-rubs and cold cloths. The night shift has always been my task -- Ron needs more sleep than I, and doesn't wake well in the middle of the night.

It's still an intense process, though my son's condition has improved a lot and he has slept through the night (for the most part) three nights in a row now. At a certain point I was reminded of what I went through when we first brought our baby home -- he was feeding every three hours, he went through a two-month crying phase at the usual age wherein he wailed through the nights and slept most of the day. I remember the nightmare of chronic sleep deprivation, experienced for the first time, and the high anxiety of tending a newborn and the first child. Such was the week we had last week.

I think about parents of children with serious chronic illnesses, like cancer and those many others of which we hear much less. I wonder how they find the strength to laugh, to make love to their partners, how they must get to a point when a crying child does not automatically cause them to jump and run anymore... when there is nothing they can do. That's part of what has been so hard for me -- there is no treatment for my son's condition, and plenty of possible negative side effects. Only pain management and hydration are in the parents' control. There's no med, no antibiotic, that cures what the body does to itself when the immune system starts attacking the organism it's supposed to protect.

But his clinic has been very supportive. So have our friends, and people from church. That has allayed some of my fear. My son's fear is another matter. He is struggling to make sense of this long illness, to understand his body's processes. At age 6 there's only so much we can say, or expect him to comprehend. But he wants very much to get a rational grip on what has happened to him. He hears the doctor saying that recurrence is a possibility, and I know he's worried.

Weeks. I should go check on him now. I am past exhaustion -- I may have actually come to grips with the fact that I CAN handle this. That it CAN be done, and by me, and with no one to pat me on the back and say "good job!" Though my husband thanked me, at one point, for staying constantly at the boy's side.

There are things to continue to think about here...

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