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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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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The Juggle

You know, I don’t write in here as much as I should, but it’s not for lack of things to say. There are always flowers growing, things I contemplate knitting, adventures with the kids, sadness, happiness, the whole gamut.

It’s just that there is so little time. I get home at 4:30 and make dinner, feed them, do C’s exercises, try to stop B from eating Lego, watch the older kids bicker or make potty jokes, yell too much, maybe drive someone to soccer. After they’re down there are dozens of dishes to do, e-mails to therapists, school forms or camp forms to be filled out, plants to be watered and maybe, just maybe half an episode of Orange is the New Black.

It’s a juggle. I often feel like I don’t have the patience for my older kids that I wish I did. A trip to the beach or the aquarium would be such a breeze with the two, but when you add two infants it feels more like trek in the Himalayas. Storytime is often drowned out by tears of a baby going to sleep. The babies are easier in some ways because it’s impossible to get mad at a baby. I know this time is temporary, but C will always need me a little more and I’m still figuring out what that will look like and mean for the other three. They do love each other a lot though. All four of them have these interesting little relationships with each of the others, and I’m grateful for that because there’s only so much of me to go around.

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Jogging Along

A year ago, we were still hoping we’d get out of this whole CP thing, perhaps with it not being too noticeable or too obvious. Based on what we’d been told, we knew that was probably unlikely, but we were still hoping. At that time, the thought of a kid who needed a walker, or a wheelchair, was kind of terrifying. Four months ago I bristled at the idea that we needed supportive seating – I still want her to sit independently, ASAP.

I’m learning patience. I still do want those things to happen – walking and sitting. We still work very hard, several times a day, to get her sitting, rolling, bringing things to her mouth, touching her toes. And we see results from that. Today she grabbed the curtains as I went past, which she could not have done a month ago. But we are getting referred to a centre that will provide us with “equipment.” We are talking about getting her a walker. Except now I’m excited about a walker. I still hope this equipment is a stepping stone in helping her eventually walk and sit independently. But I see how much C wants to sit up and be part of things, and how lately she gets left behind on the living room carpet while the other kids move from room to room. The possibility of equipment is no longer scary. I’m actually relieved that her therapists think she may be capable enough to move with a walker.

And that’s me, jogging along the path of acceptance. I still strive to be like one mother I met who said, without pausing, “I wouldn’t change it.” I can’t say that quite yet. I’d love things to be easier for her. But I do know I can’t change it. I still find I have triggers that bring me back to the NICU and birth and reliving it all over again. There is still a boatload of uncertainty. But I’m learning that instead of suppressing those feelings, I need to just RUN INTO them full force. Let them wash over me like a wave. Then I can take a break and say “Walker, here we come!” At least I hope we’re coming. Like everything in this place there’s a wait list. If it takes as long to get a walker as it did to get someone to give me some advice on feeding, we may be waiting awhile.

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11 months

One of the things I like to do with C’s therapist is talk about the small changes we see each week. Because, big picture, development is slow. At 6 months I thought C was close to sitting. At 9 months I was positive she was nearly there. Now, at 11 months (adjusted! I never think in “actual” terms.) we aren’t really that much closer. By focussing on the little changes, we keep momentum.

C has made enormous progress in many ways. Months ago I wasn’t sure if she’d ever use her fingers and hands as her arms were often just pinned to her side. Now she can move them, spread her fingers, and she works very hard to guide things to her mouth. Months ago she used to lay on the carpet, barely moving (but always smiling at everyone!) Now she wiggles up on her side, rolls from tummy to back, kicks her legs and arms, reaches for things, and can sit for a little while with just a little support. On your lap she will wriggle and move.

C can prop herself on a tray for quite a long period. Propping on the floor is much harder for her. Her hands still fist in this position as most of her energy is working on keeping up her head.

This is what she looks like when she gets tired. She’ll start to lay her head down.

Oh, and I had a crazy idea recently. A family friend pointed me toward some research on kids with CP and getting them moving earlier in modified toy cars. I see how B is learning to navigate her space – to move around chairs or crawl over items. C, being immobile, doesn’t get that education. I was trying to think how we could encourage her to do a crawling movement. I think I had seen a video of a child on a scooter board crawling around somewhere. So I ordered one and tried her on it. We’ve only tried it a few times and she wasn’t too impressed, but an added advantage is that it gets her propped up into a sort of “hands and knees” position and encourages her to lift her head. You can see here how her left arm is more involved than her right. The right one, which is less prone to spasticity, is relaxed at her side. Her left arm is fisted and twisted with the wrist facing out slightly.

And then she’s tired of being man-handled.

B is always ready to help. Or steal a toy.

Miss B needs an update too. She is army-crawling around right now, dragging herself very quickly. She is starting to bring herself to knees, but hasn’t quite got the true crawling down yet. She hates to bear weight on her feet. She also has five words, which is crazy for a tiny thing. My others didn’t talk until past one.

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Since the girls’ first birthday I am a lot more at ease with C’s diagnosis, and a lot less emotional about it. A series of things came together – first I met a mother whose (older) child presented in a very similar way, and that little girl is doing great. Her mother was a lot further down the path of acceptance, and that was inspiring to see. Then I went back to work, which has been a surprisingly smooth transition, at least as of now. And also, we passed that big year milestone. I’m not thinking “A year ago, I was pregnant. What could I have done differently to stop them coming so soon?” A year ago they were here and we were already on this journey. They are so entrenched in our lives, that I cannot imagine where we’d be without them. Time heals many things.

That isn’t to say it’s not still hard at times. I wonder about milestones. I get frustrated when we get wait listed for another services that we needed yesterday. I worry about a lot of bridges we still have to cross. But I worry less, and life just keeps moving.

The positives have stopped being “silver linings” and just been positive. One wonderful aspect is the people who have been so supportive of us. It started when our girls were in the hospital and people emerged from the woodwork with meals and kind words. And I keep meeting people through the twins, people who want to help, or just have a soft spot for a kid with some extra needs. I love that.

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The Herb Garden

It has come to my attention that this site is very slow. I’m trying a few things to speed it up, so let me know if it works.

Also, did you see my garden? Might not look like much now, but come summer, watch out world!

Along the top you’re seeing bay laurel, dill, pineapple sage, lemon verbena, two kinds of chives, stevia and blueberry bushes. Along the bottom are rosemary, three kinds of sage, thyme, and lemon geraniums. The kids planted potatoes, which will be fun. Apparently they have pretty flowers. And I’m attempting to grow some edible flowers from seed – nasturtiums, calendula and love-in-a-mist (which might not be edible itself, but I guess the seeds are.) I’ll be planting tomatoes soon. There are also passion fruit vines, which I’m hoping will soon beautify the chain link.

I can take little credit right now as a family friend came up with the design for me and told me what plants to grow, sourced many of them. I don’t think passiflora is sold at Home Depot but I could be wrong. I just did what I was told. The maintenance, however, is up to me.

You’ll be relieved to know the dead cedar hedge is gone now too. Hopefully we have better luck with herbs than we did with cedars.

Also, I’ve grown veggies before, but it has only just occurred to me how convenient it is to have them at the front of the house. On my way in, I stop to fuss over them and examine them, seeing if they are too dry, or not quite warm enough. Hopefully in a few months, I will be stopping to pick them too.

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Racing Somewhere

I was driving home the other day and I got a bit turned around on the way home. My new office is a longer commute than I’m used to, and involves crossing a bridge. I ended up taking a wrong turn, finding traffic, heading over an unfamiliar bridge and not knowing exactly where I was. My cell phone was dead and I was on my way to pick P up from swimming. Suddenly I felt a panic – I was late. And what if no one could reach me? And what if something had happened? I cursed every stop light and raced there as quickly as I could.

When I pulled up, the scene was calm. P was not yet out of the change room and certainly hadn’t noticed my tardiness. I enveloped him in a bear hug. I leaned down to talk to him at his level. I indulged his desire to linger at the nearby library, even though the girls were waiting for me at home. We took out books even though he hadn’t returned the last ones.

And he was happy to see me. But he didt have that overwhelming joy that young children get. When I peppered him with questions about the day, he said “Can we talk later? I’m trying to read.” All of a sudden my small boy is gone, and I’ve got a kid. A delightful kid, but a kid. And I realized maybe that’s what I was racing toward. Maybe that’s where the panic came from – this feeling that I needed to get there as soon as possible. When you’re in the moment, their babyhood seems to last forever, but you blink and suddenly it’s over.

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The Twins Turn One

I almost forgot to mention a very important milestone around here – the twins had their birthday! I made a video, as I have for all my littles’ first birthdays. Theirs got to be extra long though, as I felt I had a license to be a bit self-indulgent since there are two of them.

I had mixed emotions as the day approached. Their birth was happy, but also terrifying. I was looking at photographs the other day of little B which J snapped soon after she was born. They are painful to look at. I realize how close she came to not making it. She was difficult to resuscitate. And then all the fears afterwards with C. But as my mother said to me, “THEY ARE WORTH CELEBRATING!” Yes they are.

We opted not to do cake or a big celebration. I didn’t even get them a present. Instead we brought 30 or 40 cupcakes and cookies to the NICU family lounge and left them there for the parents who have little ones there now. I hope we make it an annual tradition. I remember how I’d often just forget to eat because I’d be bundled up with a baby for several hours. Hopefully it brought a little bit of joy for some people in the thick of the never-ending NICU days. We also met up with two of our favourite nurses and they were able to have a snuggle with the little ones.

So here’s the video. I will warn you that the video contains many pictures of them when they were tiny preemies and it may be difficult for some to watch. But it also shows how far these brave little heroes have come!

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