Diary April 2003


Going out

My brother has visited me on the third Wednesday morning of every month for the past four and a half years. We always go out for a walk. The bad weather had only deterred us one time. Last Wednesday was the second time. Shame.

More than four years of worry

Hein is obviously at the end of his rope. I’ve required his help for 4.5 years now. It changes a person. He gets impatient sometimes and has a short fuse. On top of that, he threw his back out on Monday. We’re going to look for more help, including weekend assistance. Thus far we’ve tried to not use professional help when the kids are around, so it usually comes down to Hein to do the work. We’ve noticed that, whenever carers are around, the kids tend to stay in their rooms, which is no fun. In short, we’re in a bit of a dip.

The return visit (2)

By now, the Dane has left and we have our privacy back. Everybody has to adjust to having guests. Floor had a great time and got very emotional when it was time to say goodbye. A great experience. Floor got increasingly more nervous as the Dane’s day of arrival drew nearer. She cleaned her room as soon as she got back from school, she made her bed and had a shower. I had a makeover too: a clean shirt and vest. All of that for the one minute I actually got to see him, because he immediately went to bed. The whole week was like that. As soon as they got back home, he went to bed and every morning they left at the crack of dawn. Even Sunday, a family day (which we stressed out about beforehand. What are we going to do? A theme park? Hiking? A football match? Opinions were divided.), was spent snowboarding. Floor had formed a sort of group with three other girls who had boys as exchange partners. No trip into the city on Saturday, but skating and bowling with the boys. Floor was a good host. The biggest point of contention was the morning shower routine, giving everyone enough privacy and time to shower while going to school on time.


Seeing as the muscle in my arms have almost completely disappeared, I’m cold a lot. There I’ll be, at night, huddled in my fleece blanket. Apparently I just can’t retain heat anymore. On the other hand, I get way too hot when it’s warm out. On Easter Day, we went to watch Floor play football, but it was way too hot for me. I’d forgotten how awful it feels. Besides, always sitting in a wheelchair doesn’t provide great ventilation. Oh, how I longed to be in a cool room with my shoes off. We’ll be holidaying in Dordogne this summer, we took the leap and decided to go abroad. I hope it won’t be too hot.

The turn

Every morning I have to make a 90 degree turn while seated on my stair lift. My feel will go from hanging above solid ground to dangling above the stairwell, a harrowing experience. It’s a question of whether I can keep my legs still, so I don’t slump down and go into a spasm. It barely ever happens. Nonetheless, it’s the most nerve-wracking moment of my morning and I’m always glad to have gotten downstairs. That’s the downside of having a house with multiple floors. Hein suggested we move or have an extra bedroom built downstairs. I’ve got the feeling that the stair lift will last as long as I do.


It had been six months since the last time I’d had my lungs tested, so we went to Utrecht again. I decided to only have the oxygen level of my blood tested, which was fine, a bit higher than usual actually. When we made the appointment we asked for my favourite doctor, but sadly we got the doctor I’d liked to avoid again (see November 2002). We tried to discourage him by saying nothing had really changed since our last appointment. Despite that, he started dutifully rattling off his questions. He asked us what drugs I use, we answered, again, that nothing had changed after last time. He got the hint and left it alone. We could have done the blood test locally and done this conversation on the phone. How does one tell such an uptight doctor that you’d love to have a conversation, but one about your holiday, the purpose of nighttime respiratory aid or high saliva production in the morning? Every hope I had of having a normal conversation with him was smothered during his “interrogation”.


We went on holiday to Denmark during the May holiday. It was amazing. We had a wheelchair-accessible house near Aarhus. A house that fitted 8 people, one bedroom too few, but otherwise completely equipped; dishwasher, washing machine, clothes dryer, a cd cabinet and a wood stove. The park itself had a tennis court and a sauna where people were expect to cool off by diving into the sea. Our daughters were courageous enough to take the plunge. Denmark is an empty-looking country, nothing spectacular but very friendly, with a lot of coastlines and water. We visited the place Floor had stayed during her exchange trip (to collect a jacket she’d forgotten there), a horribly boring town where the greatest attraction was a local pizzeria. But Floor would go back in a heartbeat. We went on a nice walk, during which everyone gave their utmost to push me up all of those hills. We went to see an open air museum, which I didn’t see a lot of because of the cobblestone roads. Aarhus turned out to be a surprisingly lively city which even had a Tivoli park, like in the Netherlands. The weather was fine. I had trouble making myself heard in a company in which it seemed like there was always at least one person talking. Doesn’t matter. I had fun.