99) A tale of two steroid weeks

E has been through two steroid weeks since I last regularly wrote anything of substance. I’ve found it difficult to write much of anything during the past 6 weeks. For reasons I’m not going to get into at the moment, I’ve been struggling. Struggling with the type of content I should continue to share. Wrestling with the validity, and legitimacy of my place, and emotions with respect to E’s life threatening diagnosis. I want to continue to write. I want to continue to try to pour my thoughts into something more concrete like words, and paragraphs, but I feel like my headspace has changed. Compared to some people, my problems are large, but compared to others, my problems are small. There’s a different perspective in play, and I’m finding it difficult to reconcile the two.

On to the update.

It was the worst of times, it was the best of times, it was the age of tantrums, it was the age of calmness, it was the epoch of insatiable hunger, it was the age of regular appetite, it was the season of screaming, it was the season of laughter, it was the autumn of discontent, it was the summer of patience – in short, the periods were so unlike each-other that it does E a disservice to compare them at all.

E’s March steroid week began on the 13^th,, and finished on the morning of the 18^th. E had quite a difficult time this go-round. He was upset, he had tantrums, he had difficulty sleeping, and all he wanted to do was to drink milk by the gallon. Everything was “no” when it came to food, and it literally took two adults to try and get him to eat his veggies and fruit.

In contrast, E’s April steroid week began on the 10^th, and finished on the morning of the 15^th. This month, you’d almost never have noticed that he was on steroids. He was calm, his naps, and sleep routines weren’t really disturbed, and he was eating normally, not constantly asking for milk or chocolate chip cookies, which is a steroid week norm. He was much more accepting of his regular food, and he had a fairly good overall demeanour. We kind of sailed through it this time, and we thought we were in the clear. The steroid monster that usually takes hold for five to seven days decided to arrive in concentrated form on the nights of the 17^th, and 18^th. Screaming, crying, upset, crankiness, not sleeping – you name it. It showed up over the course of two nights, and it wasn’t pretty. The first night, E didn’t fall asleep until about 12:30am, but he did a bit better the second night and “only” stayed up until 10:30pm.

It’s kind of like the old Firkin Pubs slogan, if I can paraphrase. Steroid week: every one’s a little different, but none’s just right for you.

98) Childhood

It’s been a while. There’s been quite a lot happening, but also not much happening, if that makes any sense.

I’m going to try an easy slide back into posting with a few different thoughts.

Sometimes I wonder how having a kid with a life threatening illness will affect the childhood of said child and their sibling. I don’t know if it will do anything long-term, only time will tell, but do I have a couple of observations for the present:

J is a master at spotting the blue H signs that signify a hospital. Almost anywhere we go, he’ll notice one and say “look, hospital!”. Somehow I don’t think he’d be so attuned to the signs if so much of our lives in the past year-and-a-half hadn’t been spent going to hospitals for bloodwork, and chemotherapy with his brother.

We have a toy medical kit at home. It was bought for J when he was younger, but now E will play with it as well. There’s a toy syringe in the kit, and you’d expect most kids to play with it by pretending to give themselves a shot in the arm. With E? No way. Everything he knows about syringes is that they’re filled with medicine, or medicine dissolved in liquids. Then the syringes are used to administer this medication orally. Naturally, when E is playing with the toy syringe from the toy medical kit, he’ll come up to us and stick it in our mouths, because that’s where syringes go, according to his experiences.