An odd day

It should have been a good day. The sun shone. I had time to myself. My boy got to school.

It didn't look like it was going to happen, the school today. When he got out of bed he was sore, and soon he was needing to eat his breakfast crouched on the floor of the sittingroom, instead of making it to the table. I resigned myself to another homeschool morning. Then, at about eight o'clock, he walked along the corridor. He collapsed again, but I realised I could probably get him down the steps of the house.

So we did it. I pushed him in his SN buggy to the door (the wheelchair lives in the car) and then asked him to walk down the stairs. He did so, tottering, shouting at me "this will make it hurt more later!" But I had a good feeling that his legs might improve if we got him there. I pushed him into his classroom, as he shouted at me that I didn't understand, he had a headache and felt sick. Then I left him there, assuming the school would call me if there was a problem. And I was free.

At the end of the day I picked him up. I was right, he was walking. "It got better," he said to the teacher in front of me, and then sang a ditty "Pain, pain, go away, it will come back another day." I wanted to cry. The teacher showed me how his name was written on the board, with the children who had concentrated particularly well. I told him how pleased I was. We went to the car.

It should have been a day that made me happy. He did it, he got to school. Then he excelled. And more importantly, he had fun. He ran around with his friends. But it doesn't, it makes me sad. When I think about it, it reduces me to tears. That was not a terrible morning, unless you count the shouting and crying. But I do count it, each and every time. I hear my boy's pain, and I remember it, even when he gets over it and has a good day. School is great, except for getting him there, which is terrible.

I am haunted by a conversation I had with friends at the time he started school. "I've decided I will only send him to school if he is happy there," I said. I was thinking not of pain, but the more normal stuff, bullying, not fitting in, that sort of thing. But I was determined that if he was unhappy, I wouldn't leave him there. I didn't want to send an unhappy child to school.

I break that promise I made, each and every time I send him down the steps in pain. Sometimes, it is simply unavoidable. This afternoon, we came home and I remembered I had forgotten to pick up my youngest from kohanga. "Come on," I said, "we have to go now." His legs had seized up, and I had to push him in the buggy to the door, then ask him to crawl down the steps, screaming. But that was OK, in a way, because it was just unavoidable - we HAD to go and get his brother, it was impossible to leave him at kohanga all night. But the morning troubles me, even though the pain itself was less: because I didn't HAVE to make him go to school. I did it because I thought he might cope, because I thought it was good for him. And on the surface I was right.

But I am aware that this is stretching me ever thinner, like a rubber band: I am close to snapping with the pressure of it all. But it's not as simple as pulling him out of school, because fulltime home schooling could well be a disaster. We don't have a car at home in weekdays, and he could wilt with the lack of friendship. He will, as he told me yesterday, miss his friends. And I can't arrange playdates because I can never tell when he will be able to stand.

The one ray of light was that today an email arrived from our lovely Occupational Therapist. She's found a builder who can do a quote for a reasonably-priced ramp. It is not legal, in the sense that it would not meet government guidelines, but it is a third of the price. Since we will be likely be paying for this ourselves (or doing fundraising), this is wonderful news.
And it leaves me wondering, how much of my despair at sending him to school is that he can't physically get there without screaming, and how much is the question of how well he will cope once he is there?

There are no answers, just like there is no cure. But there might be a ramp. That is a start.