It’s sobering to realize that without the miracle of modern medicine, three out of four of my children might my have survived this far.
I’m in a hospital room with B as she sings away, recovering from pneumonia. Bacterial pneumonia can hit fast and what seemed like a bad cold overnight moved to rapid breathing with her little ribs sticking through. Still, she seemed cheery in the wait room and was smiling and climbing on furniture. We felt silly being there as a child nearby winced in pain and another slept in her father’s arms. By the time she was assessed her lips were blueish and she was not keeping her oxygen levels above that magic 90 percent. After 24 hours on oxygen and antibiotics she is showing signs of her old self again.
M had pneumonia as well when she was one, treated at home but still very nasty. I’m so lucky to live where we do, in a country where the hospital is close, and where I don’t have to wonder if I can afford the visit.
You’d think that when I had time to knit, I’d work on any number of works in progress – B’s sweater that has been languishing since September, or my never ending blanket. But no, instead I cast on something new.
That colour combination looked good in my mind but sort of garish in reality. So I frogged it. Then I knit four inches of a new sock and realized it was too wide and the gauge too loose. Perhaps I need new needles – some yarn tourism is in order.
I was thinking about something today, that I did in my youth, which my kids will probably never do. They’ll probably never go to a record store and buy an album they’ve never heard a single song on. In this day of Youtube and iTunes previews, why would you?
Something recently made me long to listen to vintage Kate Bush. I discovered Kate Bush, who dropped off the scene entirely in the ’90s, by buying an album on a whim. I was wandering around Montreal with a girl I barely knew. I had just finished exams and she was probably one of the few who was finished too, and was free to wander. We went to a used CD store. If you went right around the start of the month there was the best selection, as many people sold their CDs for rent. I think we went to a vintage store first and maybe I bought a coat. One of us was definitely wearing a old lady coat – the kind of wool knee-length thing that your great-grandma would have worn. I saw that Kate Bush album and something about the red ballet shoes on the cover drew me in.
I’d just had my heart broken, or at least I thought I had. The mixture of joy and melancholy on that album resonated with me that winter. Fifteen years later and I still remember most of the words.
Kate Bush can sound pretty dated with many ’90s tropes, like synthesizer music, or disembodied voices which sound especially unusual in this pared down era. But man, that wavery sensual voice is timeless.
Can you believe we are STILL waiting on our walker? Tried to get it pre-approved through private insurance and waiting on that. In the meantime we finally, FINALLY got approved for government funding for kids with disabilities and are now going to pursue funding through that route.
Anyway, in preparation for our walker – which at this point feels almost mythic – we are doing some treadmill training. Little C managed 12 minutes on her very first go. I was worried she’d be a little turkey because she generally hates to participate in physiotherapy when I am there. But she was very interested in what was happening and quite enjoyed it. She tired out quickly though – her little legs getting stiff and less cooperative by the end. We’re hoping to get her up to half an hour on the treadmill. While much of our physio is at home, we go to the Centre for this since we need a treadmill and also a special hoist.
If you follow me on Instagram, perhaps you already saw this picture of C standing briefly. To be fair, I should probably show the whole series, which shows her head going down and her giving her mildly anguished face after a minute or so. She might not love it, but she can do it.
Sometimes things feel like they move at a glacial pace, but it was only a few months ago that C stood for the first time, and for a long time she could not stand really without orthotics (and probably shouldn’t). So she is weight-bearing now, which is amazing. She does not have coordination yet to sit. She can barely roll and can’t really move herself out of a position, so pulling up will be a long time coming. She was very much propped for this photo. But I took a bike ride with her the other day for the first time since August, and I remembered how I used to have to hold her head. The only seat we found that gave decent head support was quite upright, so her little noggin did bob down after a while. By the end of the ride, I’d have one arm behind me propping her up. This time I only had to push her head up once. Slow and steady wins the race. Or maybe it’s not a race at all.
We went swimming today, and forgot to pack socks and shoes for the twins. We walked through a market on the way to the car and B was screaming to be let down, so I let her walk a few steps holding my hands. A couple of people stared. One gave me a full up and down, looking at her, then me, then her feet, then me, then her, then my feet – well, you get the idea. And I wanted to say “Yes, I am that parent whose child is barefoot in November. And walking. I’m a Negligent Parent. But don’t worry, you will be Responsible Parents. Your child will never go barefoot in November. Never scream to be let down. Never have a raging eczema rash unresponsive to any dietary changes or prescription creams. She’ll hit all of her gross motor milestones two weeks early. And she will always have shoes.”
Hm, I love Brooklyn Tweed wool and stocked up at Knit City. I’m knitting myself a pink sweater and it makes me very happy.
Tonight, for the first time in many weeks, he let me read him a bedtime story.
There’s a new post on Love That Max, which is one of the more well-known special needs/CP blogs. She posts about a study in the Lancet which reports that adolescents with cerebral palsy self-report similar levels of quality of life as “able-bodied” kids. Obviously, the study only included children who were able to report. But it’s interesting.
What does that mean? It means I worry a lot for nothing. It means that many kids with cerebral palsy are enjoying life just as much as their siblings, cousins, uncles etc. who don’t have CP. The only area where they didn’t report similar quality of life? Friendships and socialization.
I always think about how much stigma there is associated with disability. We live in a world where there’s are people who believe that children would be better off dead than disabled. That prejudice is, if this study is in indication, so far off the mark. It’s based on unsubstantiated stereotypes about what quality of life means. I wonder if we’ll ever reach a day where a diagnosis of disability like CP won’t be that big a deal. I don’t expect anyone to jump for joy on finding their child has had a stroke or a brain hemorrhage. But I hope we reach a time when it isn’t met with dark somber talks and an immediate listing of everything possible secondary diagnosis that might happen now that your child has a brain injury. Maybe instead doctors will say: “You know, I won’t lie, this is going to a be a lot of work, a road less travelled, and very hard at times. But check out this study from the Lancet! Things will probably be okay!” I expect many other serious, and sometimes debilitating, diagnoses are met that way, because they don’t carry the stigma of physical and possibly intellectual disability (ranging from mild learning disabilities to significant delays) associated with CP. Parents should be told that these children, at least the ones who can tell us, are happy with their lives. But not in some sort of platitudinous way about how they’re always happy. That’s not what the study says. But they’re about as happy as most other kids.
If we lived in a world where there was less stigma associated with disability, maybe the friendship pieces and socialization would fall into place. How often have my able-bodied children approached kids with disabilities and reached out to them? Not often enough. And it’s not something as a parent, that I have encouraged enough. I have some work to do there, and so do all of us. My child is lucky – she will have her siblings. Her twin is more than ready to smack her over the head with a block when she reaches out to paw a toy B is playing with. But she’ll need more than that, in the long run.
It was Knit City this weekend. And wow, the weather was amazing. Sat outside in the sunshine eating a caramel crepe and feeling overheated in my sweater. And bought Brooklyn Tweed Yarn, which I can’t get here. I want to make their beautiful pattern Coda.
I also took a sock class with knit designer Kate Atherley and am working on a pair of custom socks. Remember when I planned to make 12 pairs of socks one year and then made, um, one? Well I’m not committing again. But I would like to get this pair done in October, and to knit more socks in general.
My other favourite yarn is Rain City. The colours are amazing, and I couldn’t resist adding a little more to my stash, though I had PROMISED not to buy any more yarn on spec. But it’s so pretty.