Category: Misc.

Engaging

I never know exactly what to say when a child sees with my child in a wheelchair and ask me questions like “Why is she like that?” 

I have a nice answer for “Why is she in a wheelchair?” (Usually something along the lines of “She needs it to move,” or “She can’t walk, yet.”) But I still get thrown by questions that imply deficiency, like “What’s wrong with her?” I usually say “Nothing.” Children are undeterred and will ask again but I like to think to think it helps them reframe their question.

Every now and then, I’m just not in the mood to answer, particularly if it’s a child I don’t know and I’m in the middle of something else, and I’ll pretend not to hear. Other times I welcome the attention and try to engage them: “Are you interested in her chair? Don’t you like the wheels?”

I have no difficulty explaining she has CP, or that her muscles don’t work like theirs, but some day she may reach an age where she doesn’t feel the need to make her medical condition public, no matter how visible it is.

Soon I suppose I’ll be able to deflect the questions to her. I wonder what answer she’ll prefer. I suppose that like me, it might depend on the day. 

Ordinary

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.

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.

Vacation

If you follow me on Instagram you might have noticed that we’re away this week. Traveling with four children is a bit insane but we have an extra grown up on hand to help out. We’re staying in Maui, which somehow felt manageable with four kids. We’re not on the ocean — most beach hotels become unaffordable with four kids — but we have a very sweet little rental in a cute town and we’ve been exploring the beaches, towns and forests. And we can hear the surf through the windows of this little old plantation style home.

(null)

(null)

(null)

Redesign

Over the past year and a half the focus of this blog has changed quite a bit. So I’ve done a bit of a redesign. You may have to clear the cache on your browser to see it properly – I know I did. I’ve dropped “lawyer by day” tag line since this blog has never really been about law and doesn’t promise to be. I’m also not in private practice anymore, so while I’m still a lawyer it doesn’t feel as unusual to be working as a lawyer and, you know, having other things to write about.

I’ve thought about adding some more pictures, but for now I’m enjoying the clean and free design. Maybe that will change. I’ve also got to reorganise the categories I think, but I’ll work on that later. I hope you enjoy it!

Decluttering

I have bought nothing yet for Christmas despite the fact that I have four children to shop for. I decluttered my house last weekend, taking bags of stuff to the local charity drop-offs, or just throwing it away if it was not reusable. And I’m finding it hard to think of buying more things just to replace what I got rid of.

I read this kooky little book recently called the Japanese Art of Decluttering. My friend teased me that in Japan it’s an art, instead of just something you do around the house. You do not need this book to declutter, but I did like its central premise, which is that you should only keep things that “spark joy.” That’s an evocative sentiment in itself, isn’t it? Suddenly I was looking around at dozens of things that didn’t spark joy – a broken picture frame, a Perler-bead turtle, a water gun arrived from a loot bag. Gone – all gone.

It’s really just another way of saying what William Morris apparently said – Have nothing in your houses that you do not know to be useful or believe to be beautiful. I can’t say I’m entirely there yet – I see another Perler bead turtle nearby. But it’s a good start.

Giving Tuesday

Since it’s Giving Tuesday, I thought I would do a brief summary of some worthwhile organisations for those interested in supporting kids with special needs. These are specific to my own community, but if you’re not from BC there are most certainly similar charities in your community too!

The BC Centre for Ability is an amazing organization that provides therapy and programs for children and adults with disabilities. C gets her therapy there through the government’s early intervention program, but they do much more than that. I’m actually astonished that this organization does not have a higher profile in Vancouver, but if you read through their newsletters you will get a sense of the work they do.

When I think of the Red Cross I often think of their international work, or of those commercials that used to be on when I was a kid where they brought care packages to families whose houses had burned down. One of the things they do in BC is provide medical equipment which might otherwise be unattainable. For example, they have an equipment program which provides equipment for seniors who need it to live independently. They also provide equipment like walkers and seating for qualifying disabled children. You guys would be astounded at how much this equipment can cost, especially as children outgrow it! So these types of programs are incredibly important.

The CKNW Orphan’s Fund is a charity I learned about just recently. They provide grants to both organizations and directly to families. We are lucky and have pretty good insurance, but for families who do not costs of things like orthotics, speech therapy and so on can be out of reach. Other things, like converting your car so you can put your child’s wheelchair in it, are not covered by insurance. The Orphan’s Fund makes this achievable for low-income families.

Last but definitely not least, BC Women’s Hospital. BC Children’s is a great place and gets lots of press, but BC Women’s is so incredibly important as well. They care for the tiniest and sickest newborns. Also, think about what a difference it makes if a woman with HIV, or who is heroin-addicted, gets appropriate care. For the child she is carrying it can make a huge difference in their quality of life – and they have their whole lives ahead of them.