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.

Quality of Life

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 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 opts for no special treatment. B is more than ready to smack C 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.

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?


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

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)

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.

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

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.

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.

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.

Working on Sitting

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.

Tired of it

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

B ready to help

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.


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.

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!

Advice for Myself

I always see these posts on blogs about “Things not to say to people who’ve had miscarriages” or “Things you didn’t know about special needs parents.”  And it’s so tempting, after hearing “Wow, you’ve got your hands full!” for the hundredth time, to catalogue the silly but well-meaning things people say to you when you have a child with special needs.  But then I realized that I really can’t make the woman on the airplane, or my husband’s great-uncle, or the therapist at the assessment centre read this article, so any advice for them just ends up being blown away in the wind.  Instead, I offer advice to myself.

Develop a thick skin.  That’s it.  Because people will keep making insensitive comments, and sometimes I will feel like educating them, and sometimes I will feel like ignoring them, and sometimes I feel rage.  But no matter what I feel, they’ll keep coming, so I must just stop letting them bother me (too much.)

Part of this is easy for me, because I do think I can recognize that most comments, even mildly upsetting ones, are well-meaning.  People will say things like “She looks fine!” or “My cousin was told he might have CP and he’s fine!”  People will draw analogies between my situation and totally unrelated ones, such as “Well my sister’s daughter was born with a  slight cleft lip, and she’s fine!”

Or sometimes people will make comments that make things sound much worse than they are.  When P matter-of-factly told the animator at the air and space museum that his sister couldn’t reach as easily because of her “brain injury”, I saw a look of horror cross his face.  I don’t want anyone to feel sorry for us.  Feeling sorry for myself from time to time is okay, but having someone else feel sorry for me is something else indeed.

The thick skin is also needed in dealing with medical professionals.  Sometimes it’s because  I’m asked, once again, to recount events that are very traumatic for me.  Sometimes it’s because someone says something insensitive about her prognosis.  Once an ultrasound tech told me that seeing my girl’s scan had ruined her day.  It was well-meaning, I think, as in she was saying she felt sad about it.  But seriously?

Another time, a person who was assessing my daughter started out our session by pointing out several deficiencies, which was upsetting because we’d worked for weeks just to get her to that point.  It annoyed me, but after fuming for a little while, I just let it roll off me.  Awhile ago, I got a report on C  and when I read it, she sounded so much worse than she is.  A report that said your nearly one-year old daughter is functioning at a level far below her adjusted age could have been pretty devastating, but by then my skin was already getting a bit tougher.  So I thought about it, and then dismissed it.  She has a physical disability and some of the markers that apply to other children can’t fairly be applied to her.  I can’t take it personally, or worry about it too much, because if I do that every time I see something like, I will be permanently tied in knots.

I have some more advice for myself on other matters, but I think that’s enough for tonight.

Checking In

My blogging software always ask me “What’s on your mind?” Well, before I sit down about a million things… the softness of cashmere yarn, which I am knitting with for the first time; the lovely evening in we had recently with friends; how our physiotherapist helped me recognize the achievements that C has been making in the past few weeks, while I thought we were in a period of plateau. But then I sit down to type and all I can think is about how exhausted I am.

A few days ago I had a lovely day out with the “bigs”, as I think of them now. We went to the aquarium as a family, then dropped the babes at home. I took my bigs to get our nails done. P even got into it, choosing a sparkling red. (However, I think he had a pang of self-consciousness afterwards, which is a bit heartbreaking. He managed to chew several of his fingers quite clean of polish in time for school.) We also had sushi – love those $5 kids’ combos, and went swimming. It was sort of a glimpse into the future, and how fun all these munchkins are going to be once we’re out of survival mode. I feel like the first 18 months or so you’re almost just surviving parenthood and then somewhere around then the mists begin to part. We’re getting there.

B is finally getting a bit healthier and is not waking up in coughing fits multiple times a night. Sadly, she’s still out of sorts for much of the day. The appearance of two new teeth have probably contributed to the overall misery. She spoiled me, because she’s usually my sweet, good-natured baby who is so content. But lately the girls have switched roles and it’s C who will happily lounge, giving us big squinty-eyed smiles, and B who wants to be held all the time.

Someone asked me recently if I felt like I was back to “normal.” She wanted to know if I felt happy again after everything that happened in the NICU and the ongoing worries with C. No. I don’t think I will ever go back to feeling normal, any more than you go back to feeling like your old self after becoming a parent. Something has changed. But at the same time, it’s just a new normal. Parenting a child like C who is differently abled, disabled, special needs, extra needs – whatever you want to call it – 99% of the feelings are just the same as parenting any other child. I worry about all my kids. In this case, some of my worries are a little more concrete. I wonder if she will walk and how she will look when she walks. I wonder if she’ll need surgeries, or Botox injections to release her tense muscles. I watch M, age 3, carefully string tiny beads, or ride her balance bike, or draw a letter after being shown just once, and I wonder if C will ever have the manual dexterity to do those things. I wonder if there are other challenges ahead that we don’t yet know about, and what those might be. But she’s just my Coco – my beautiful fuzzy head, her head still slightly wobbly, her little neoprene gloves keeping her hands open, but with a big smile on her face. She is perfection.

I had this mild epiphany the other day as I was watching how easily (some!) things came to B, and wishing it could be the same for C. But she doesn’t need to me to torture myself with what-ifs. Especially right now, when she doesn’t even know or care about any of it. She will only know herself as she is, and she needs me to love her just as she is. And that I can do!