Still Here

Gosh, I keep meaning to come back to this blog and post more regularly, and then it becomes a daunting task. But I will dive in, even if it’s just with a brief update.

Where are we now – C is walking in her walker, albeit very resistantly. She is talking and speaking in a way that’s amazing me. Certainly her speech is slower than her sister’s, and easier for “familiar listeners” to understand. But she can tell me about her day (I scratched my face, Nanny put on my pajamas) and ask me for things (Sit down! I want up! I want to play with puppy! I want my own bike!)

Milestones, well they move slowly. We still work on that elusive sitting. We worry about hips and bones and see more specialists now than I can count. I have some thoughts on the medical system, and the siloed nature of specialties, which I may come back to at some time. The reality is that helping C achieve her maximum physical potential requires daily labour, and it’s not something that can be fixed with a pill or a surgery, although those things may be tools along the way. So her core treatment remains therapy, mostly implemented by us, her caregivers.

I struggle sometimes with the battle of it. Things like going to preschool, parking at the hospital, having place to play, not being stared at, getting the right funding for her equipment in a timely way – all of those things require a lot of emotional energy. Sometimes it’s just mentally exhausting having to beg and plead for dollars. That is the biggest challenge, more so than the fact that we spend half an hour each night rolling on the floor and laughing and reading books and calling it therapy.


It feels like a long time since I blogged, probably because it has been.  Also because the novelty and emotions that come with having a special needs child start to be less novel and so I have less to report on.  These days are beautifully ordinary.

C is talking more, even in the past few weeks. I feel like I can ask her questions and have a short conversation.  “I do it!” “Mine!”  Beautifully ordinary two-year old phrases.

B was sick recently with a cold and cough.  She had the “work of breathing” signs I now recognize well, and I took her  up to the ER.  It was almost her longest stay yet – two night and three full days, rather than being released in the morning.  She was unhappy, pleading with me to remove her sat probe and tearing her nasal prongs off at one point. She will be on preventative steroids from now on and we hope we can avoid another ER visit.

I am enjoying a weekend away, running my third half this year. It’s been a great foray back into exercise after a few years and pregnancies. And of course I’m knitting… Socks.


I can’t believe summer is more than half over. Here we are in August.

I’m sure I’ve posted about this before, but one of the things I struggle with, having four, is that I never feel like I have enough time. I’m also kind of a social introvert. I made that up by the way. But basically, it means I love being around people, but I also really need time to myself to recharge.

Anyway, there is never enough time to carry B as much as she wants, to talk things over with M, to find out what P’s reading, or to make sure C’s getting all she needs. On the flip side, those one-on-one moments are really memorable. P is out tonight, and M doesn’t like to be alone in her (their) room. So, I lay down with her to put her to sleep. I could smell her sweet hair, and she dozed off while I was there. Because I don’t get to do that very often, it felt really special.

Also, their siblings are good for them. C has always been quite passive about being “engaged” with the kids – she’s okay to watch. But recently, that’s changing. I was painting a second hand high chair in the front yard recently (actually one I hope to adapt for C), and M was helping me sand and prep. Oh my goodness, C screamed bloody murder when the other girls went outside and she didn’t. I finish work a little early on Fridays, so our nanny was still here, and she was trying to comfort her, but nothing would calm the screams until I offered to take her outside. I’m glad she’s getting interested in the world, and wanting to do what her sisters do, even if the high chair prep was a little insane with three “helpers.”

I sewed something!

Remember the old days when this was a blog about sewing?  Well, I actually sewed something this week!  I bought this book last year I think, intending to make these sweet little tanks, reminiscent of the sets by Redfish Kids.  I cut out two for each twin, and two pairs of bottoms each too.  If one is good, then four must be better, right?

I sewed something!

Maybe I’ll even get all crazy and sew Miss M a back to school dress. I was just looking at all those things I sewed two years ago and wondering where some of them are…

Post Traumatic Growth

I was reading somewhere about this thing, it’s like the opposite of post-traumatic stress. It’s when people, following some sort of traumatic event, their lives actually get better, perhaps because they find meaning in the trauma, or gain a new perspective.

Anyway, I was thinking about that this weekend as I ran my half-marathon in support of the CP Association of B.C. I remember for awhile after C was born I felt guilty when I ran, or even went on a long walk, wondering if she would ever be able to do the same. I still don’t know if she will, but I have no excuse.  So this weekend I did just that, running a half-marathon, raising close to $2000 for charity, and I had a lot of fun doing it. It was not a textbook-perfect race – I started to fade in the last quarter and walked a good bit of it. But I had these profound moments – there were tears running down my face watching the elites race past so elegantly and seemingly effortlessly. Another time when I was walking a girl shouted out “we got this to me!” And I was able to run the last few hundred metres because of her.

And then I came home and J told me that C had spent a good long time picking up toys and moving them out of her toy boat. The child has such limited fine motor skills that you might have told me she had just flew to the moon. He was elated.  Then she and I sat and did it again, first with one hand, and then the other.

I remember another mom saying to me that she wouldn’t change her daughter’s CP, and at the time I was not there. I’m not sure I’ll ever be there, but I think about it less. Another mom the other day whispered to me conspiratorily as she watched her son in a power chair – “You know, life is still just as happy, isn’t it?” No, it’s not any less happy. Quite the opposite.


She’s not tired

At least four or five times this weekend someone commented on how “tired” C looked.  In some cases it was well-meaning: a woman who told us it was “so adorable how she is falling asleep!” In another case a man came up and stared and said rudely “She looks REALLY tired” as we entered the change room, implying we should take her home for a nap.

The thing is, she is not tired.  In fact it’s past 9 and I’m sitting in the dark by her crib waiting for her to fall asleep.  She doesn’t have the greatest head control so if you’re holding her she nestles in. Her head droops so she might seem drowsy.

I don’t correct people.  “She’s not tired, she has a disability” is not a good conversation starter. 

Her disability is more obvious now, as her twin climbs up the play structure and she needs support to be sitting.  I find people have two reactions – either they stare as they try to compute what’s going on. Or they very obviously don’t stare – averting their gaze and avoiding eye contact. 

How lovely when the odd person just sits down and starts to talk, addressing her like any other child, ignoring the elephant in the room, or acknowledging it in a simple way, like “Those AFOs are so cute these days with the patterns.”  We go to our local pool so often the lifeguard recognized us and said “She’s grown so much since I saw her last!”  I’m sure she remembers us partly because we have the kid with the disability, but she remembered the kid before the disability.
I’ve  stared at people before, for many different reasons,  and I try not care about those who do.  But here’s a hint:  if you get “caught” staring, smile.

Don’t Call Me Mum

As I was standing at the hospital blood clinic today with one of my kids, the lab technician tut-tutted me for not having signed in properly.  “Didn’t you go to registration, Mum?”  It occurred to me that since my kids started having more contact with the health care system, I have been called “Mum” by receptionists, clinicians, specialists, nurses, and therapists. I’ve been called “Mum” by people wielding needles, ultrasound wands, lunch trays, pulse-oxometers, and even people strapping my children into restraints for chest x-rays. In short, I am being called “mum” by many people who never spent time in my uterus and have no other legal or moral claim on my maternal affections.

It doesn’t always bother me.  Frankly, when I am being called “Mum” by these folks, I often have bigger things to worry about.  But I found it particularly irritating today.  What does it say to me?

It says “I can’t be bothered to glance at the portion of your child’s chart that contains your name. ”

It say “I’m not going to bother asking your name and then trying to remember it for the duration of this conversation. I will probably forget your child’s name, and all about your child, a minute after you leave.”

It says “I’m going to talk to you the way your child talks to you rather than speak to you as though we’re on the same level and partners in this care.”

In some cases I am having serious conversations about my child’s respiratory rate, or her oxygen levels, or the amount of spasticity in her body, and in those cases I really hate being called “Mum.” Don’t prognosticate on my child’s future and then fail to ask my name.

I’m not always offended by it.  Some NICU nurses called me “Mum” as they brought blankets, or helped me find a bath to wash a tiny four-pounder. They may have been someone walking by and helping out, not someone who spent a shift caring one-on-two for my girls.  And I think they were using the word to remind me that, despite all the tubes and the fact that I had to ask where diapers or towels were, I was the mother.

But there should be a rule – if you will be having a conversation that’s important, and that includes almost any conversation in the medical realm, ask my name. If you’re having an informal exchange, or scolding me because I didn’t register, or didn’t understand, don’t condescend to me and call me “Mum.”  And if you’re not sure, don’t do it.


There are many things I feel that C misses out on by being one of four. If I had fewer kids, I’d have more time and energy to devote to doing her physiotherapy exercises. I’d be less tired at the end of the day and I’d have five more minutes to put her in the gait trainer. She’d spend less time sitting her in her high chair doing nothing while I nagged P to do his home reading or dealt with B’s endless demands for “uppa.” I might be able to afford to work less and focus on her more. I could get her in the pool more than once a week.

But one area where I feel like it’s a huge boon to her is language. She hears people talking all day long. Recently our speech therapist suggested that we really focus on repeating words. She had a term for it that I’ve forgotten. But, for example, you’re playing blocks and you say “Look at the block! Are you hitting the block? Should I get another block? Did you like that block?” Eventually she’ll clue into what a block is and try to approximate the word. It can feel a little weird and artificial, but when you have a typical two-year old, she does that for you. B is talking more than C, but she still talks mostly in single words – like “yuck”, “eat”, “baba (bottle)”, “want more”. With her limited vocabulary she repeats those words or short phrases many, many, many times a day, and eventually C picks them up too. A few months ago it felt like B was eons ahead with language, but now I’d say that C can say a good portion of the words that B does. She doesn’t use them as frequently or as fluidly – she has less control over her mouth, and the lack of trunk controls makes her a bit breathy. But she says them. She even has a few of her own like “walker” and “stuck”.

A few nights ago we were realising what leaps and bounds C has made with talking recently, and we were feeling so lucky about it. Which is funny because if two years ago you’d have told me I was feeling lucky about anything to do with CP, I probably wouldn’t have believed you. But over time, perspectives change – a lot.

Turning Two

I can’t believe my “babies” are on the verge of two. When I look back at this picture, I still remember the smells of the Neonatal Intensive Care Unit so clearly. There was the soap, and iodine and hand sanitizer. That hand sanitizer always sends me right back to 2013. And then there was the plasticky smell of the breathing masks. There was the smell of the harsh chemical wipes we used to sanitize those big pleather chairs, which we shared. Sometimes there were no big comfy chairs, and you had to wait, hoping some other mother would leave her baby so you could settle in for a snuggle. Then there was the smell of the rubber gloves we wore when handling the wipes to sanitize those chairs. There was the comforting smell of those freshly-laundered yellow towels. The nurses often warmed them up in the microwave to keep us toasty. Somewhere under it all, there was tiny baby smell, buried under cotton hats and masques and Pampers that went up to their armpits.


I think they were both on CPAP by the time this was taken, and I can still hear the burbling noise of the Bubble CPAP machines. There was the feel of little squirmy baby limbs, which I should have been feeling somewhere on the inside instead of out, and the little foamy mouths from the CPAP. There was the hum of the feeding machines with a big syringe of yellow milk. For B that machine would compress that syringe over two hours or 90 minutes, as her tiny tummy could not handle it any faster. This picture sends me right back there. I can’t believe they’re two.


One of the biggest things going on around here is C’s new Scooot.  I’ll start by saying that I paid full (gulp!) price for the thing and this is a totally unsolicited review.  (I always wonder that when I read reviews, don’t you?)

The Scooot is a special needs device aimed at kids two to six. Basically, it’s a little triangle on wheels, that has different attachments that can allow a child, depending on their strength, to “crawl” while on their tummy, or to “scoot” while sitting. It also has add on wheels that make it look sort of like a pre-wheelchair.  (Unlike a wheelchair however, it is for indoor use and if your child is as involved as C, is not something she would be able to travel very far in.)

Before it arrived, I was most excited about the chair mode, particularly as we had tried the ZipZac chair and liked it – C even tried to push the wheels.  Unfortunately our funding request for the ZipZac was denied, and while I am still hoping for a reversal of that decision, I thought the Scooot might be an alternative – it’s just slightly less expensive than ZipZac.

As it turns out, for us it doesn’t meet the same need as the ZipZac as it is considerably less supportive  and C doesn’t have the trunk strength to sit on it in chair mode.  However, we have gotten so much use out of the tummy-time mode.

Tummy Time

Tummy time is a mega-challenge for C because her arms are very high-tone (i.e. spastic). She also has very low tone in the trunk. That means that when she’s on her tummy, she has great difficulty getting her arms forward to push off the floor, which in turn means she doesn’t develop core strength that we need to do so many other things. For some reason I feel like tummy time was easier for her when she was younger, but perhaps I just took pictures when she did it for a second, and now I assume she could do it for longer.

Anyway, the Scooot brings her arms forward for her and lets her get into that  Cobra pose position that is so important for trunk strength, and shoulder and arm strength. When she’s on this thing, we can roll a ball to her and she can bat it to us. Or she can stare at trains. Or investigate the straps on her highchair.


Within a week of it arriving, C had figured out how to move around on it.  I’ve talked before about the glacial pace of CP, so that was nothing sort of a miracle. She even chased the cat!   Moving independently is a whole new thing for her.  I optimistically call her gait trainer a walker, but the truth is the “walking” only happens with a whole lot of coaxing and assistance.  The scooting (scoooting??) is totally on her own.  Unfortunately, she soon developed blisters on her feet from pushing off and hasn’t been as keen to move around, but I’m sure once her feet are better, she’ll be at it again. Both the independence, and the reciprocal movement of her feet, should help her with the walker too. Maybe even with sitting… but we weren’t going to talk about that, were we?


So yes, I’m pleased. I bought it with the knowledge that there is a fairly decent return period, but I can say for sure we will be holding onto this thing despite the hefty price tag. In future I hope C will get use out of the other modes too.  I must say, while it’s not particularly difficult to change the modes, it does involve bolts, and washers and several Allen keys, so we’ll probably stick to tummy mode for quite a while.

C also has some other very cool devices to get more moving, like her new toy car. We’re using that outside though as our house is not large enough for it but if you check me out on Instagram you can see pictures of that too. I didn’t get it on film, but my favourite moment so far was when she totally ignored us telling her to stop. Every toddler should have that prerogative!