Sitting Redux

I was very excited in the past few days because C has been consistently sitting for about a minute. Prop-sitting – meaning she uses her arms, but still a minute! Then, while reading over some old posts from a few months ago, I stumbled upon one from July in which I celebrated her sitting… for about a minute. That is the glacial pace of CP, or at least of C’s particular and unique version of CP. Now I will say there are significant differences between then and now. At the time she did it once and then did not repeat it for some time. She has gotten stronger and can now consistently sit for periods of about a minute several times a day, sometimes a few times in an hour. She can also get herself out of sitting (but not into it). She won’t necessarily wind up where she wants to be, but she can roll out.

I guess now that I think about it, I assumed that like a “typical” baby, one day C would just go from not-sitting to sitting. And now I realize that in this crazy CP-world, sitting is relative. Sitting independently might mean you can do it for a few seconds, or a few minutes, and a few months later, maybe even for 10 minutes.

Why is sitting such a recurring theme on this blog? I guess it’s symbolic in some ways – the ability to sit is often seen as a predictor of how affected a child will be by her CP. But practically speaking, it’s difficult having a child who can’t sit – who you can’t just plop on the floor at a friend’s, or who needs to be held or placed in equipment if she doesn’t want to lie on the ground. So for a while I was very focussed on sitting. And then I sort of stopped worrying about it, and we stopped practising or trying to get her to sit, but just did other things – swimming, more tummy time, rolling. She is undoubtedly stronger and more coordinated even if, at first glance, her sitting doesn’t seem all that different.

A Chair with Wheels?

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.  But at the end of the day, it’s still a very passive thing.

C is becoming less passive.  She has learned to nod for “Yes” as in “Do you want a baba?” Nod.  “Do you want uppa” Nod.  Did you like the Christmas tree? “Nod.”  She hasn’t mastered the shake, but she does have a little “Na” that she is starting to use as “No.”  As in “Do you want to go in your walker?” Na.  “Do you want to go to bed?” “Na.”  She also started saying “Hi” yesterday over and over and over in response to to our “His!”  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.  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.  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, 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.  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.  And she is working on walking and loves the treadmill.  Part of me thinks that we don’t want to let her “rely” on a wheelchair when she has this chance to walk.  But are we depriving her of things in the meantime?  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?  We’d still do tummy time, we’d still practice walking. This is a strange shift mentally.

Treadmill Training

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.

Bit by Bit

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.

Can stand for a couple of minutes now.

A photo posted by Hil (@imlookingatstars) on

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.

Equipment!

Today I am a happy camper. After struggling for months to fit C into a newborn bath ramp she had long outgrown, and then giving up on it entirely and having to bathe with her so she didn’t get stuck in an involuntarily reflexive movement she often reverts to when stressed, we finally have a safe bath seat. She can sit up in it and play. Now, I’m told that she didn’t actually love being in it during bath time. I was out doing something selfish, er, I mean, doing “self-care”, at the tennis court. But she’ll get there.

We also borrowed a walker. It’s an old walker – I’m going with the description “vintage” – but it works for now. In the meantime we’ll wait for the interminable bureaucratic processes to occur so that the funding agency can confirm our child is indeed disabled enough to qualify for funding so we can buy a different one that will grow with her to preschool age at least. So things are moving!

I’d put up a video of her using the walker we’re going to get, except she was wailing, and I was frantically singing “Itsy-Bitsy Spider” to calm her down. She did eventually settle into it, but of course she has no idea that it IS a walker, which will allow her mobility and independence. To her it’s just an annoying thing mum put her down in, when she really wanted to be held. For a child who can’t move independently, being held is far more comforting than sitting somewhere where you might end up slumped in a position you don’t want to be in, and won’t be able to get out of. But I’m optimistic that will change.

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.

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!

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.

2014 Socks

It feels a little silly sometimes to have a post about my feelings about my child’s disability, and then in the next post to be all “Lalala, I love socks!” But I think that’s what I was meant about life being a bit absurd. That’s just the funny thing about parenting – one minute you’re crying with a specialist and discussing your daughters’ delays and necessary therapies. The next you’re laughing your head off at your son’s kindergarten artwork, or wishing desperately they’d go to sleep so you can take a break and surf the ‘Net for handbags.

Socks

So yes, more socks. My first pair of 2014, which means I’m a little behind on my 12 pairs in 12 months schedule. But these have a generous cuff, and I’m planning a few ankle socks so hopefully there is still time to catch up. It’s the Churchmouse Basic Sock pattern. One problem I have with sock patterns is they’re often too wide for my feet, even when I knit tighter than the gauge suggests. I think I’ll reduce the overall number of stitches next time. My feet are pretty normal width too, maybe even on the wider side. Hasn’t stopped me from wearing them nearly daily though. The yarn contains cashmere, so they’re deliciously squishy under boots. The yarn was an impulse buy at Knit City, but the seller also sells on Etsy.

D-Day

A few days ago, Cora was diagnosed with cerebral palsy. We’ve known since a few days after she was born that this would most likely be the case, though no one ever used that term. We have also known since she was four months that more than likely it would affect all four of her limbs. But because it’s hard to tell if a tiny infant has a movement disorder, it is typically not diagnosed until they are a bit older and are exhibiting delays. She is now eight months adjusted, and the tightness in her limbs, and the difficulty she has in moving is apparent to a more trained eye. Nothing has actually changed, it’s just that now a doctor is willing to affirm that yes, the brain bleeds have affected affected her motor skills. They still cannot tell us what it means exactly. Will she walk? Hold a pencil? Play piano? No one will say for sure. What J and I have read is that parental expectations are a huge determining factor, so we continue to assume that she will be running on the playground some day.

Before I get too far ahead of myself, you may be wondering what is CP? It is just an umbrella term for someone who had a brain injury before, during or shortly after birth which has affected their motor skills. In C’s case, it happened after birth as a result of her trials in the NICU. It affects approximately 1 in 400 people. For some people it might mean something as subtle as a limp. For others, it might be almost entirely incapacitating. The brain is a very complex organ and can compensate in very unexpected ways. It was once believed that it was a static condition, but it is now known that in some cases the brain can reorganize itself around areas of damage, so therapy can help a lot. It is very difficult to predict what it will look like early on, although we know it will not be at the very extreme end of the spectrum. But beyond that, we don’t really know what it will look like in Cora and no one will, or should prognosticate.

Even though I knew this was coming, both J and I have had an unexpectedly emotional reaction. I am so proud of the gains she is making, learning to use her muscles and working so hard to do what is easy for others. She is my little warrior. And I know that to be the best mother I can be to her, I need to keep moving on the path to acceptance. But… I’m not there yet. I still feel sad. And angry. And guilty. At the same time I’m so grateful, so proud of her, and feel so, so lucky to have her in my life. She makes my life better because of who she is, just like my other little ones do.

The diagnosis doesn’t actually change much in C’s life. She is already getting regular therapy, and she will continue to get it. We keep working with her, helping her learn to relax and use her arms and legs. We keep working with Beatrice too, who is apparently slightly delayed as well.

J sometimes says “Well it won’t get any harder than this.” And maybe it will or maybe it won’t. In the meantime, life continues, messy, beautiful, fun, ridiculous, mundane, absurd, with the occasional struggle but also lots of joy.