Summer Days

Yikes, sometimes I have so much to say I have to schedule posts and then a week or two goes by and nothing, nada, zip.

We just got back from vacation, which was lovely. We stayed on a farm, in an old log homestead. I was thankful again, that despite C’s CP, she has been very healthy. She got a fever on Day 6, and if she’d had a shunt, we’d have had to race to a hospital to make sure it wasn’t malfunctioning. Thank goodness, she seemed to just have a virus, and I just dealt with it the way we do with the others. But she was so sad and so much weaker. She couldn’t even tolerate holding her head up in her high chair. Thankfully she’s on the mend and she is back giving her patented Coco smiles.

I knit a lot, but didn’t count on no web service, so I couldn’t access my Ravelry patterns. That means, I just did about 20 more Pop Blanket Squares, but I won’t bore you with pictures. Instead I’ll bore you pictures of the kids.

Coco on Hols

Bea

Beets!

I also read two books. The first was Four Walls of My Freedom, by the mother of a now-adult child with CP. It was a good read – first just because it’s interesting to read the perspective of someone looking back on the early years. With the benefit of hindsight, she questions whether all the more intense therapies or medical treatment was worth it in the long run. The balance between “fixing” and “accepting” is a constant moral dilemma I have. It’s sobering too, as she explains some of the trials they’ve gone through, such as when she thought the doctors were finally understanding the pain her child was in, and instead she was investigated for giving her child too much pain killers. It’s more than a memoir though, as she makes some interesting arguments about the way we value people with disabilities, offering a sort of a primer on some of the philosophical thinking in this area. She discusses controversial figures like Peter Singer, who has argued that infanticide may be warranted in the case of children born with severe disabilities. The prejudice and stigma faced by people with disabilities is very real – perhaps one of the last areas in which it is socially acceptable to make that kind of argument. She proposes a very different approach, based on the thinking of Amartya Sen, which values experiences and relationships as measures of well-being. She works with someone to develop an index of well-being that applies to her family.

I also started, and am mostly through, Andrew Salomon‘s Far From the Tree. At first I was puzzled by this book, which deals with a concept he calls horizontal identity – children who are different from their parents due to deafness, dwarfism, severe disability, or even things like being born of rape. I wasn’t sure what it all had in common, or whether I should be insulted by the idea that having a disabled child was similar to having a child who commits mass murder. Anyway, I put it aside and read it and accepted perhaps we shouldn’t place these experiences in a hierarchy. Each chapter stands alone and simply recounts the experiences of families dealing with these “differences.” He tends to the extreme – his examples on disability were all families of kids with multiple severe disability, and I found his chapter on autism particularly bleak. But he resists easy, pat summaries – discussing the controversial Ashley Treatment with sensitivity and compassion to both sides of the debate. His strength is that he lets the stories speak for themselves, and they in turn speak to the larger human experience. I felt profound empathy for what they were going through, even in stories where parents walked away and said “Sorry, I can’t do this.”

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Abate

I fell in love with this yarn at Knit City last year, and with another Knit City pending, I realized I better work my way through what I bought last year! I just love the crazy neons and how you can get a single stitch in one colour. It kind of reminds me of the crazy variegated acrylics you can get, but this is hand-painted loveliness. I hate knitting with acrylic, so this is as close as I’d ever get.

I started to knit a Purl Soho placket sweater. (Must add that I’m not convinced the pictures currently featured on Ravelry do it justice – it’s a very cute pattern and when I made it, the collar didn’t flare) But I had been a bit too casual about swatching it, and it turned out much larger than expected. Miss M announced she did not want another sweater, so I tore it out to make it for some more willing creature. The yarn, a Blue Leicester DK, knits up more like a worsted. I inadvertently blocked part of it by leaving it under the sprinkler, so I can confirm it puffs up nicely too. Anyway, I chose a worsted pattern instead, Abate, which has been in my favourites for ages. I bought three skeins so I am hoping I have enough left over to make some socks or a hat for ME.

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Is it Just Me?

If you’ve read this blog before you might remember that I have a pet peeve about articles written in the second person, particularly parenting ones. (See how I just did that? Used the second person?) “If your child won’t sleep through the night you should…” “You know you’re a twin mom when…” It attempts to universalize experiences that are, in most ways, pretty individual. The most recent manifestation of this phenomenon that I have noticed is on pages or in groups aimed at “special needs” parents. It’s the ubiquitous special needs inspirational post. (This blogger did a send-up of this issue recently.)

These listicles or memes are posted frequently in some of the groups I check. There was one I saw recently, and I realized I could not relate to anything on the list. I’m not saying these emotions are invalid, or wrong or that some “special needs” parents don’t feel them, but it certainly not a feeling we all share.

One was: We are good at keeping secrets. Um, no. I have a blog about my daughter’s disability. A PUBLIC blog. Shortly after the girls got home, I was chatting with a young guy at my local coffee shop, and before I knew it I was launching into my daughter’s brain injury. I cried with mothers at my son’s school whom I barely knew at the time. I find it comes up occasionally at the lunch table over work, because, guess what, I spend a fair amount of my home life dealing with it. So I am not a secret-keeper. Not that there’s anything wrong with that, but I’ve never been able to keep much in for long. What can I say – I like to talk about myself.

Another was: We are jealous of other families. Again, NO. Before I had a daughter with CP, I probably assumed people in my position did feel this way. Do I sometimes wish my kid didn’t have to deal with her disability? Yes. Do I sometimes wish I could change that rocky first few days when this all happened? Of course. Do I feel jealous of other people’s family? Wish I had some other snotty-nosed kid who could walk instead of my delightful gal? Wish I had YOUR kid? No. I will, someday, get to the point where I stop wishing this hadn’t happened. Because it has.

Another meme you see a lot is that special kids choose special parents. Having spent quite a bit of time in the Neonatal Intensive Care Unit watching many desperately ill children and their parents, I can say that, sadly, that’s not true. As one of the nurses said though, a lot of them just rise to the occasion. I do feel like I am a good parent and a good advocate for her. Not perfect though. Not born for this. Just dealing with it because, well, I have to.

While I’m complaining, I’m also not in love with the term special needs. I feel like it’s just so broad. People with gifted children are calling themselves special needs parents. Do they face challenges? Sure. Do they deal with the stuff we do? No. Should we get inspiration from the same insipid quotes? Probably not. I do love reading special need parent blogs and I learn a lot from *some* of them. But I don’t even necessarily relate to parents of other kids with CP, as in some cases their CP might only affect a few very minor things, whereas C is classified as “quad.” And even among people with four limbs affected, there is a huge range. So wouldn’t it be fitting to embrace the diversity and stop trying to assume we all have the same feelings?

Posted in At Home with Preemies, Preemie Stuff | Tagged | 1 Comment

Milestones

At 14 months (er, 16.5 adjusted – is it strange that I NEVER think of them in terms of their actual age?):

Bumbo
I can play my keyboard, pick up a spoon and chew on it, and sit with support (though I do find it tiring after a few minutes)

AFOs
I can also roll from front to back (and probably from front to back, except I hate to), pout when my therapist comes, and laugh at my brother’s silly jokes. I can stand if my waist is supported. In my AFOs I can also stand if you are just holding my hands.

Toy Car
I can also ride in a toy car (but make sure you lock that door!) kick in the swimming pool and I am starting to babble lots more.

Bubbles
As for me, I can sit independently, climb stairs, crawl (though I prefer the bunny hop), say Mama, Dada, Mah-go (Margot) (a few other words too) and sing along to Roly-poly

Ride on Toy
I can also have tantrums, pull apart my mother’s purse and scream louder than anyone in the house

Swing
Oh, and I can steal my sister’s toys or sit on her play tray, but I also give her lots of zerberts and pats.

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Sweet Little Shrug

Okay, this is a bit of a cheat, because I knit this months ago when I was on maternity leave, but I finally got around to sewing buttons on, and I don’t think I ever posted it, so here you go! A sweet little short-sleeved cardigan.

Shrug

This was a super easy knit, basically made because I wanted to use up some Cascade I had kicking around from my aborted attempt at a blanket. But it’s a practical little item, and I think it would even fit Miss M as a little shrug over a dress. Oh, and without sleeves it knits up so quickly!

C in her baby shrug

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Crochet

The pop blanket continues…

Pop Blanket Progress

Also, I’m learning a new needle art – crochet.

Crochet

It’s a bit of an adjustment for me. I’m at the point in knitting where I can “read” my stitches – recognise mistakes, purls, increase and decreases. I can count rows and can figure out how to get where I want to go. With help from Youtube, I feel pretty competent at most projects. But I can’t do that with crochet, so this is a challenge for me. If I make a mistake, I just rip it all out. Casting on is much harder than in knitting, at least if you want to make sure you have the right number of stitches. I recognise now that this may be a function of the yarn, which contains merino, and has a tendency to stick together. It is not very forgiving. That said, once you get going, it’s very quick, so that’s appealing.

I originally wanted to learn to so I could use it to seam my pop blanket, and also to do edgings and stuff. But now I’m starting to be intrigued by stand-alone projects too.

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Pop Blanket Update

Well, I’ve got nearly enough little squares for a baby blanket, but I don’t have much use for a baby blanket. I’m thinking I want it to be at least throw size, but that would mean, by my calculation, about 80 squares to make it 50″ by 60″. Which means I have a lot more knitting to do.

Also pondering whether I should do it rainbow-styles, or random. Decisions, decisions.

These squares are upside down as I was drying them in the sun.

Blocking the POP Blanket

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Summer

I’ve been off knitting for a while – hard to deal with bulky wool when it’s 30 degrees. But I have a new project perfect for summer. The pop blanket! Wee little colourful squares that are fun to knit, knit with Noro so you never quite know what colour the next square will be.

Pop Blanket
Okay, these two look kind of like boobs, but imagine more! In blanket shape!

What else is up? The garden is growing.

Garden - July

The big kids took horseback riding lessons, which Miss M in particular adored.

Riding

C and I had fun in Stanley Park. Not sure why my hair looks so ’70s unwashed here, but since the Coco-monster looks cute I will post anyway.

Fun in Stanley Park

B learned to climb and torment her sister. Darn, thought I had a better picture of her riding in my new front-bike seat, but I can’t find it.

Bea climbing
And since it’s late and Flickr is being finicky as usual, more later!

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Difficult Questions

A few weeks ago, while we were at C’s physiotherapy session M wrapped her arms around me and said “Why are C and B different?” I couldn’t think of a quick answer, but M is nothing if not persistent. “Why are they different????? WHY???” I can’t remember what I muttered, but I didn’t do a very good job since we were in a session with three therapists, and two cranky babies. When I tried to return to it later that evening she seemed to have forgotten.

I’ve been open with the kids about C’s brain injury. We tell them that part of her brain that helps her move got hurt. It’s possible that her cognition or vision or other things are affected as well, but we don’t know that, and so we haven’t gone there yet. To me she seems as intellectually aware as any other baby, and that’s how I treat her and wish her to be treated. Sometimes I wonder if I am too open, as P happily blathers about it with random strangers. Other times it comes up in a nice way – like we watch a show called Signing Time. I explained to the kids that the lead little girl’s sister also has an “owie” on her brain like C, and that she appears in lots of the segments. M was very pleased by that. Sometimes I wonder if “owie” is an appropriate way to describe it, but it is an injury and I’m not sure it’s useful to get overly technical.

Last night as M was brushing her teeth, and I was putting one of the twins down, I heard her ask “When will C’s owie get better?” Then I overheard a very calm, patient and lovely explanation of neuroplasticity, aimed at a four-year old. The broken part won’t heal over. Other parts of her brain may try to take over what the injured part would have done, but they might not do quite as good a job. P came up from the bath spluttering “NEVER?” “But won’t skin grow over it?” asked M. “How big is the part that’s hurt? Show me on my hands.” The truth is we don’t really know, and J never saw the scans, but I think he went with “thumb.” Probably more, but thumb is good.

“You mean she might never run as fast as I do?” Probably not. “Even whens she’s SIX?” We hope she’ll walk by then, but maybe she’ll need a walker, or even a wheelchair if we’re going far. But she might be very good at other things. Then later, M putting on her pyjamas, she was singing, “But I want a wheelchair. I want to be the one in the wheelchair.”

These are the questions adults don’t ask – but kids get right to the heart of the matter. These are surreal conversations, and they are difficult ones. But they are very healing in their own way.

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Sitting!

We were feeling a little low earlier this week because we felt like things were kind of static. Today Miss C prop-sat for over a minute!! This is a huge milestone for her as conventional CP predictions are that if a child can sit unassisted by age 2, they will be able to walk unassisted, at least at times. She’s done it before for short periods but never as long or with as much control.

Today we start swimming lessons!

Big girl Cora sitting on her own!

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