C’s little custom chair sits on an old stand that we borrowed from the hospital. It has a desk so she can have toys in front of her. Â But at the end of the day, it’s still a very passive thing.
C is becoming less passive. Â She has learned to nod for “Yes” as in “Do you want a baba?” Nod. Â “Do you want uppa” Nod. Â Did you like the Christmas tree? “Nod.” Â She hasn’t mastered the shake, but she does have a little “Na” that she is starting to use as “No.” Â As in “Do you want to go in your walker?” Na. Â “Do you want to go to bed?” “Na.” Â She also started saying “Hi” yesterday over and over and over in response to to our “His!” Â Her mouth, like every other part of her body, is affected by her CP, and so these words are very precious.
But now that she can ask what she wants it’s hard that her only option is the passive option, of sitting and us bringing the toys to her. Â I found myself wishing the chair had wheels lately, as she hates to be left alone in the living room as the other three move into the kitchen. Â The other day I dragged the thing in front of the fridge so she and B could knock magnets off the fridge and she loved it.
And I wondered,Â am I wishing for a wheelchair? We’re still waiting for this walker – after months, it has been approved and ordered, but we have no idea when it will come – maybe just a few more weeks. Â That will help because unlike her current “stander”, it doesn’t have a tray blocking her and the real world,, and is lighter and more manoeuvrable. Â And she is working on walking and loves the treadmill. Â Part of me thinks that we don’t want to let her “rely” on a wheelchair when she has this chance to walk. Â But are we depriving her of things in the meantime? Â The reality is her stamina even for her interim walker, which she uses as a stander, is limited. And how different would it be to have her sitting in a wheelchair that moves as opposed to the hour or two she spends in her little stationary chair? Â We’d still do tummy time, we’d still practice walking. This is a strange shift mentally.
I love listening to my two very different children play together. Â Right now they’re playing with their Minecraft stuffed animals. Â M insists there is a wedding and has dressed her animal in a sparkling cape. Â P is willing to go along with the wedding theme so long as there is lava at the wedding. Â And explosions. Â When M gets worried about the safety of the guests he agrees the lava should be cordoned off with caution tape.
I have bought nothing yet for Christmas despite the fact that I have four children to shop for. I decluttered my house last weekend, taking bags of stuff to the local charity drop-offs, or just throwing it away if it was not reusable. And I’m finding it hard to think of buying more things just to replace what I got rid of.
I read this kooky little book recently called the Japanese Art of Decluttering. My friend teased me that in Japan it’s an art, instead of just something you do around the house. You do not need this book to declutter, but I did like its central premise, which is that you should only keep things that “spark joy.” That’s an evocative sentiment in itself, isn’t it? Suddenly I was looking around at dozens of things that didn’t spark joy – a broken picture frame, a Perler-bead turtle, a water gun arrived from a loot bag. Gone – all gone.
It’s really just another way of saying what William Morris apparently said – Have nothing in your houses that you do not know to be useful or believe to be beautiful. I can’t say I’m entirely there yet – I see another Perler bead turtle nearby. But it’s a good start.
Since it’s Giving Tuesday, I thought I would do a brief summary of some worthwhile organisations for those interested in supporting kids with special needs. These are specific to my own community, but if you’re not from BC there are most certainly similar charities in your community too!
The BC Centre for AbilityÂ is an amazing organization that provides therapy and programs for children and adults with disabilities. C gets her therapy there through the government’s early intervention program, but they do much more than that. I’m actually astonished that this organization does not have a higher profile in Vancouver, but if you read through their newsletters you will get a sense of the work they do.
When I think of the Red Cross I often think of their international work, or of those commercials that used to be on when I was a kid where they brought care packages to familiesÂ whose houses had burned down.Â One of the things they do in BC is provide medical equipment which might otherwise be unattainable. For example, they have an equipment program which provides equipment for seniors who need it to live independently. They also provide equipment likeÂ walkers and seating for qualifying disabled children. You guys would be astounded at how much this equipment can cost, especially as children outgrow it! So these types of programs are incredibly important.
The CKNW Orphan’s Fund is a charity I learned about just recently. They provide grants to both organizations and directly to families. We are lucky and have pretty good insurance, but for families who do not costs of things like orthotics, speech therapy and so on can be out of reach. Other things, like converting your car so you can put your child’s wheelchair in it, are not covered by insurance. The Orphan’s Fund makes this achievable for low-income families.
Last but definitely not least, BC Women’s Hospital. BC Children’s is a great place and gets lots of press, but BC Women’s is so incredibly important as well. They care for the tiniest and sickest newborns. Also, think about what a difference it makes if a woman with HIV, or who is heroin-addicted, gets appropriate care. For the child she is carrying it can make a huge difference in their quality of life – and they have their whole lives ahead of them.
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.”