Wednesday, September 2, 2009


In Sweden as a child, I knew “nonstop” from the movie theatre. It was the Swedish name of m&m chocolate candy, and it could only be bought in the movie theatre. It was a treat.

Right now, nonstop means being in the hospital without no end to it. The last 3 weeks have been intense. First a week of pneumonia with one night in the ICU (and a skipped vacation), then the scheduled liver & muscle biopsy and botox with much more pain involved than we had anticipated, and now we’re soon on our 4th day of this ICU visit. They stopped valium yesterday, but wanted to keep us another 24 hours for observation. The oculogyrical crises have not ended, but are less intense. We might go home tomorrow or Jacob might be put back on valium. I am not sure what way it will go.

When Jacob ends up in the hospital, I typically get into my hospital routine. I get all organized about all the things I have to cancel and reschedule. I get organized about Sarah’s routines and things that she has in place. I try to keep our house in order with the little time I have available. I keep up with my work. I try to fit in a spinning ride on our bike for some mental strength. Joakim and I discuss who will be with Jacob and who will be with Sarah when and where, and who will get to sleep in their own bed, and who will get the thin mattress in the hospital. It’s like a well-known routine. Sometimes it comes very easily to me. This last ICU visit not as easily. It’s interesting, since Jacob is not “intensive care sick”. I am not worried about his life this time, just waiting for the oculogyrical crises and Jacob’s infection to go away. Maybe this place simply brings back too many bad memories from June. It’s an interesting relationship with the nurses and the doctors here. They are simply wonderful, really caring and interesting people, levelheaded at all times. I just know them a bit too well by now. Even the volunteers up in the playroom started telling us about the different times Sarah had been visiting them tonight. I am digressing...

I do think it’s “non-stop” that makes me tired tonight. I know Jacob has a scheduled appointment with ENT tomorrow afternoon, so even if we get discharged, we’ll be back then or we reschedule this appointment for the 4th or 5th time. I am ok with that though. I just feel that we all, especially Jacob, needs a little bit of a break from all excitement lately. It’s time to feel how the daily routine works again, nothing fancy, nothing extra-ordinary, simply a week of school, therapies, and scheduled doctor’s appointments where we all eat dinner at our own table and sleep in our own beds. Simplicity rather than nonstop.

Good night, Maria.

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