Baddies 


Today is my daughter’s fifth birthday so on Sunday we threw a Nintendo themed party for her. She’s a gamer and that’s the theme she chose. Thanks to my wonderful parents in law being willing participants of my crafting assembly line we were able to go overboard on the decorations and really create an immersive environment. It wasn’t until we were almost finished that I looked up and saw the rows and rows of ghosts suspended from the ceiling and realized this looked very much like a Halloween party. All the decorations were characters from Nintendo games, but they were all bad guys. 

In the end it mattered not at all. The kids had great fun, the adults got to watch them have fun and we even got to relax a bit. It was busy (19 people in our small house!) but a success. 

Today I am fighting my own baddies. Clumsy hands, weak legs, a neck that doesn’t want to hold my head up, fatigue, difficulty breathing, speaking and chewing. I spent the day alternating between trying to accomplish things (we catch a train first thing in the morning for a week away) and lying on the couch unable to move. But just like the party, in the end it all worked out. My in-laws saved the party and now my brother is visiting so while he entertained my daughter I was able to accomplish what I needed to. 

Hooray for good guys. 

Cabbage


Last year I scored big on plain white Patons Kroy sock yarn at a tent sale so I’ve spent the year experimenting with dye. I’ve tossed ideas around about starting an etsy shop but for now I’ve just been playing. 

I cooked rotkohl, or purple cabbage, for dinner one night and couldn’t just pour that beautiful purple water down the drain. Into the dye pot it went along with two skeins of yarn. When I finished it up the next day it wasn’t what I wanted – too grey and washed out. But once I strategically added some red and blue food colouring it was actually quite nice.  

I knitted up a little sweater dress and mailed it off to a pregnant friend and a couple months later was tagged in the above photo on Facebook. Perfect baby, perfect reward. 

Banting 


While walking through Walmart the other day my daughter was singing a made up song which mostly consisted of the words “I love my needle, I love my needle, oh I really, really love my needle!”  

She was singing about a pen which my mother had just given her as a present.  It is a souvenir pen that looks like a syringe filled with blue liquid. We fund it during a recent trip to Banting House in London, Ontario.  It probably sounded like a strange song to anyone listening.  Most people, children especially, do not love needles.  But in our home this is a common refrain.  

I love my needles.  Truly.   More precisely, I love my insulin.  I am so grateful to Dr. Banting and all the others who worked so hard to make insulin available to us diabetics. I am very intentional to speak positively about my insulin pump and insulin pen injections.  They keep me healthy, they help me, I am grateful and happy to have them.  This is the language you will hear in my home.  So it’s not surprising that this is the language I hear coming out of my daughter’s mouth as she offers to inject anyone sitting still long enough for her to poke.  

The 100 year anniversary of the discovery of insulin is 5 years away and I’m debating getting a tattoo to celebrate. I just don’t knew what exactly it should be. Maybe an old school vial of insulin?  (Like the one from the museum pictured above – complete with animal fat settled at the bottom.  Ew.) Or a syringe?  As much as I love my pump and the technological advantages it gives me to control my glucose levels, I do really like the feeling of manually injecting insulin.  It feels like I’m winning.  Like I am taking some control over my body and gaining some mastery of the fuckery it throws at me every day. 

I have time to think about it.  In the meantime we will have to see how my daughter feels about needles after she gets her scheduled immunization shot this coming Monday. I doubt she’ll be singing her invented tune, but I hope she can see it for the benefit it gives rather than just the inconvenience it presents as. 

Peaches 

When I was nine I spent a week at my paternal grandparents house. It was the first time I spent that much time away from my parents and it was a very unique experience that still stands out in my mind.  My Opa and Oma didn’t speak much English and my Oma was determine to get some German into my head while I was there. Every activity we did, every task we accomplished was punctuated with her verbally labelling everyday in German.  

Every morning we would walk to the park so I could play, which would mostly consist of me sitting on the swings by myself because as the oldest of four children I did not know how to play by myself. 

Every afternoon, at three o’clock, we would sit on the front porch,  all three of us, and eat peaches. Peeled and sliced up in little glass bowls with ruffled edges that look like lace. Cream poured on top.  Just eating and silently watching the world go by.  I don’t remember any German lessons in these moments.  I don’t remember any talking at all.  Just the sweet creaminess in the hot afternoon. No language needed to share contentment. 

I’ve hardly eaten peaches since that summer because the fuzzy skins are revolting and and peeling them is a nuisance.   But this year they’re just so tempting that I find myself standing in the kitchen, slowly peeling one or two most evenings and remembering that summer. I’m brought back to those afternoons by the tactile memories that linger in my fingers and my tongue as I peel and eat,  peel and eat. 

Nephrologist


When my daughter stopped napping a couple years ago we instituted a QPT (Quiet Play Time) every afternoon. Usually she spends an hour playing with her toys in her room but lately she had been colouring pictures instead. 

She came up the other day, mid QPT, to show us her drawing. I was pretty sure I recognized what it was but I had to hear her say it. 

“Kidneys! The blue is the veins. If I drew them bigger they would be lungs.” 

I asked why she drew kidneys and she explained that she just liked them. I wasn’t surprised. She has loved her kidneys since she was three. She used to sing to them, she gives them water “to wash” and she has told me that they are beautiful. Anatomy is a big interest of hers but kidneys have always held a special place in her heart for some reason. 

So as she finished showing me her picture I said “Hey, I want to teach you a word. Can you repeat this?” 

“Sure mama.  What’s the word?”

“Nephrologist.”

Myasthenia Metaphors – Buffering 

This is part of a series of metaphors where I try to describe what it feels like to live inside my body. 

Last week we had had a particularly busy day and late night so the next morning my husband asked, as he often does, how I was feeling. We were at the park watching our daughter play and I tried to describe it. “I feel like a computer that needs updates. You know how you move the mouse and the cursor just isn’t quite in sync? Like there’s a lag? Everything it working but just not quite on time. Y’know?” 

And he said “like buffering?”

“Yes! My whole body is buffering.”

Sometimes that’s how it is, every movement is intentional and I have to consciously think it for it to happen and there’s a little lag. It makes me clumsy and frustrated but at least I’m still moving. 

So that day I popped some extra mestinon and sped myself right up to normal operating speed. Instant updates. 

Silver Linings – On The Fly 

This is part of a series of posts about Silver Linings. There are a lot of shitty things about chronic illness, but there are some hidden surprises that are actually quite good. These are the good things. 

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On the last day of school my daughter slept in by about an hour and a half. And I let her because it was the last day of school. Nothing matters on the last day of school. She woke up and we immediately got in the car and drove my husband to work. Then we stopped at McDonald’s where she ate breakfast and we completed her entire morning routine in the McDonald’s bathroom. We have done this more times than I can count. I feel like a significant portion of my parenting occurs at McDonald’s. Play dates, dinners, breakfasts, timeouts, important life conversations, chicken nuggets – McDonald’s has it all.  
Last week we went to the dragon boat festival to cheer on my husband’s office team. I packed a picnic lunch and sunscreen but didn’t even think of the fact that boats = beach. We found the beach and decided to swim anyway. In our clothes, with no towels. We just ditched out bottoms and away we went. Tshirts dry quickly. 

I’ve always been the kind of mum that plans just enough to be able to do things on the fly. I keep enough stuff in my car and my bag that we are never really stranded. We can almost always make it work where we are. This has only intensified since being diagnosed with MG last year. 

My ability to keep parenting like this is partly attributable to the fact that I’m not working right now, and partly because I have to keep a flexible attitude due to my ever shifting illness. So this is another hidden benefit of chronic illness. It shapes our rhythms and routines in a way that is very fitting for our family. It gives us a freedom and flexibility that we love. I didn’t expect that motherhood would be so influenced by MG in this way, but I’m thankful for the opportunities that have come out of it.