Oh dear, my plans to blog daily have failed again! It's been over a week since my last post. It's not that I don't have ideas. My lists of ideas grow daily. I do find it hard whilst living the hospital life to find the brain space to develop ideas and put them into the kind of sentences I'm happy to share with the world.
I think we've been here six weeks now. I's need to look at my diary to check that for sure. I've reached that stage where the days begin to merge into each other and, at times, you forget what day it is. Thursday's are easy as their arrival is heralded by the weekly fire alarm checks. Weekends are also easy. The consultants come round earlier and always look more relaxed than in the week, usually in jeans ready to go home and chill with their families and hope not to be called back to emergencies. As long as your child is stable, nothing much happens other than that. Weekends are long and often the hardest times as your mind is invariably on home and the people and activities you'd usually share weekends with. Other days tend to be very similar.
Usually, by now, we'd be in a routine. I sleep in the nearby Ronald McDonald House and arrive back on the ward to Wills first thing at about 7.30. We watch some TV, eat breakfast and get ready for the ward round, physios, teachers and other visits. William usually goes to school at 9.15, comes back for lunch at 12 and back to school from 1.15 - 3.15. During those precious hours I can think, write and work. That's the usual pattern long admissions with set backs since William's transplant have taken. This time it's been different. We've had loads of tests, each one bringing a change of plan. Wills has been ill with pneumonia… Two days ago, finally, we've been able to establish a routine of school from 1.15 and two precious hours for me to get back into my workspace again.
Routine is a good thing but 'over routine' can be the thing that really drives me crazy in hospitals. I remember a time before transplant when we were living in hospital and had been told we wouldn't be able to leave until after William's transplant. We had no idea how long that could be and so it really felt like a prison sentence with no release date in many ways. For weeks on end the exact same people would come into the room at the exact same time saying the exact same things. They were lovely people saying lovely things. At 8.15 the cleaning lady came in every day with "Good morning William, you are better today!" in here lovely cheery Indian accent. The play specialist peeked her head around the door in the exact same way at 9.00 saying 'Hi Guys' with the exact same intonation… and so on. Lovely people doing a fantastic job to brighten our day, but for me it really did begin to drive me crazy. It was like Groundhog day, it really was. Every day, day after day, exactly the same. Those things used to start really annoying me and I used to jump in quickly to change things. To quickly jump in and say something to the cleaner or play specialist to prevent them from saying their usual greetings or do things that we did in the mornings in a different order.
For now, I'm welcoming some kind of a routine so I can 'bag' the spaces where I can have a bit of space and do the things I need to do. Now I've found it I WILL pull my socks up from now and get writing. I'll be making sure things don't get over routined though…