Social distance

The world is weird right now. Covid-19 is tearing across the planet and I wasn’t anxious about it until I heard the stories out of Italy.

Doctors are being forced to choose who to save and who to let die because there aren’t enough ventilators for everyone who needs one.

And that scared me.

Illness isn’t so scary to me because it’s a constant companion and I expect it. I’ve been sick, I am sick, I will be sick. And the medical system has fixed me, it keeps me alive, and I’ve always just had this faith that it will be there for me in a crisis.

So hearing that health care systems are overwhelmed and are needing to triage patients was a shock. I know I would not do well in a triage situation because I have underlying health problems that would make recovery take longer than an average person.

And I support that. If you could save two or three people in the time it would take me to get off a ventilator, then don’t give it to me. Star Trek gets it: “The needs of the many outweigh the needs of the few, or the one.”

And at least I’m prepared. I live daily so that if I die I’ll have no regrets. I try my best to prepare the people around me to be alright without me.

That said, I’d rather not go now. As much as I’m proud of how well I’ve taught my daughter about life and death and faith and God and kindness and love, the simple fact is that no child is okay when they lose a parent young.

So we’ve been social distancing this week. We play card games, read Harry Potter, watch movies (I signed up for Disney+ yesterday), clean light switches and knobs, bake bread, walk outside, and wash our hands a lot.

And it’s fine. I know a lot of people are finding it stressful to stay in their homes so much but I feel like chronic illness has prepared me well for this.

I had two years off work when I was too unwell to do much so I have mastered the art of occupying not only my time, but also my daughter’s, without going out.

Like the homeschooling parents I see on social media who are clearly unfazed by having their kids home, I see people with chronic illness similarly comfortable with the task of isolation.

We social distance all the time. We self-isolate routinely out of necessity, to protect ourselves from all viruses, and burnout, and spaces that are inaccessible to us. This is not new to us, it’s just on a larger scale.

I think that this experience will generate more understanding and empathy, going forward, for people who are immunocompromised and always vulnerable. The ones who routinely feel the way the general population does right now.

I’ll be glad when this is over and life can go back to normal. I miss McDonald’s and thrift stores and seeing my friends, but for now I’ll enjoy my kitchen and yarn and books and my family. I have all I need.

I made candles the first day we were home and then we used one for a St. Patrick’s day liturgy shared online by littlewaychapel.

Mothering/Momming

I find summers difficult because on top of the heat and busyness there’s a pressure to make every moment count. It feels like I’m supposed to do all the things – go to the beach, splash pad, park, cottage. Have picnics, play dates, quality time.

And I want to do it all. I want to be that mum – the one who rocks at summer. I had one of those moms. We did all the things and I never realized how much energy it takes to be on the parental side of that.

Matching dresses.

This summer though instead of feeling frustrated, I’m feeling grateful. Grateful that I’m able to keep up better this year and actually do many of the things, but really grateful to the other moms who step in and carry some of the summer load.

Matching tattoos.

Because our family lives far from us so we’ve had the need, and opportunity, to cultivate some really strong friendships here in our city.

I have one friend in particular that I refer to as my “life wife” because we partner daily and live life together.

Through her family I’ve inherited an entire neighbourhood of friends. We have backyard barbecues and pizza parties and impromptu afternoon chats in the front yard. The kids run wild from house to house, zigzagging across the street, splashing in pools, skipping, riding bikes and generally being very loud.

My daughter spends her days there while I’m at work and we were chatting one day about the differences she sees in that household versus our own. We established that I’m more of an inside mum while my friend encourages lots of outdoor play. My daughter explained “that’s just how her momming is.”

True. And I’m so appreciative of her “momming.” And of all the other parents who contribute to my daughter’s childhood.

I’m often sent photos of the adventures they’re having while I’m at work and it fills my heart with joy to see my girl out in the wild, feeding chipmunks, and exploring defunct railroad tracks.

My friends take her apple picking, cherry picking, and strawberry picking. With them she practices searching for caterpillar eggs, bike riding, and fort building.

As a disabled mum I am so grateful that there are people more able-bodied than me who can offer the experiences that I struggle with.

Off to find a cherry tree.

Not only do they include my daughter in their adventures but they support me to join in as well.

When I wanted to go camping last summer they made it work. When I wanted to go to the beach they physically helped me walk back to shore when my legs gave out in the water. When I wanted to go for a forest walk they chose a steady path and pace, then sent the kids into the woods to play for a bit while I rested before starting the trip back home.

I’m feeling especially grateful today because I’m realizing all that I have lost.

My “life wife” and her family left this morning to move 10 hours away. It’s not permanent, and we’ll see them in a few months, but it leaves a big hole in my life. I’m grieving that loss.

But.

While I grieve I can also celebrate – celebrate the friends who are still here, celebrate the adventure and opportunities for my friends who are moving, celebrate the fact that I have such a nurturing community to be part of.

Anyone, disabled or not, would be lucky to have people who love like this.

Cost/benefit

One of the days I got it right. I brought my walker to work which helped me walk and doubled as a place to hang my phone for timed selfies.

Some friends and I were chatting the other day about the fact that I sometimes choose to do things regardless of the consequences which I know will later come.

I’ve been thinking about that conversation for days.

On the outside I know it looks like I abstain from a plethora of activities because of my MG, which is true. I don’t run (not even to catch a bus). I’ll go to the bowling alley with friends but I don’t actually bowl. I don’t go for hikes. I don’t take the stairs unless I absolutely must. And the list goes on.

In reality though, I choose to engage much more often than I abstain.

Almost every activity in my day has the potential to hurt me and yet I still participate in so much. I’ll climb the stairs of a double decker bus because my daughter loves the top. I’ll make dinner although it tires my arms and back. I’ll drive to run some errands or to see friends knowing that my eyes will hurt afterward. I’ll take time to explain something to a colleague at work and then pump up my lungs as I recover from all the talking. I’ll sit at tables with friends, or coworkers, or family and hope that the Ktape on my back helps me stay upright.

Almost every motion of the day requires a cost/benefit analysis. I don’t automatically say no to things because there’s a cost. I just have to count that cost to make sure it’s feasible.

I’m sure I seem overly cautious to people when I decline invitations because I’m not sure what kind of chairs will be at the event, or when I ask that we not travel in the same car when they’re fighting a cold because I’m on immunosuppressants. And sometimes I’m sure I am overly cautious.

But I often get it wrong in the other direction too. I’ll think I’m able to teach that 3 hour course at work and then I’m gasping for breath that evening. I leave my walker at home, assuming my cane will be sufficient and then I’m holding on to walls as I limp around the office. I go grocery shopping and then feel the weakness in my hips all day afterwards.

I never quite know.

I’ll just keep trying to get it right.

Carry

I’m sitting on the bus coming home from the hospital (routine blood work, nothing exciting) and there’s a young mom sitting across from me. She’s wearing all her winter gear and has her hands folded across a big baby in a carrier.

I watch her lift the baby’s sleeping head and reposition it against her chest and it gives me a flash of memory. It’s one of those sense memories where you can smell something long forgotten, or feel a sensation of temperature or texture.

As she lifts that sleeping baby head I remember that feeling. Peeling that sweaty cheek off my sticky skin. The weight of my daughter’s head in my hands. The floppiness of her body. The gentle thud as her head drops back down onto my T-shirt. Her legs resting on my hips. Her hands limp, or maybe clutching at me momentarily as she dreams.

I carried her a lot. When she was born we bought a baby carrier instead of a stroller and it was one of the best decisions.

At first I carried her on my front. We danced through the aisles at Ikea. We rode city buses together. I nursed her while pacing the halls of the parliament building. I spent a four hour layover in the Miami airport bouncing her to sleep and then moving gingerly while reading a book from one of the many bookshops as she had a much needed nap. We went through airport security with her strapped to my front, sound asleep.

She got bigger and I moved her to my back. We went up escalators, walked to the mall, still took city buses, and hiked in Gatineau park. If I had had another child she would have had to give up her place in the carrier but since she was my only, I carried her until she was three years old and 35 pounds.

And I’m so grateful for that time. My body was strong and capable and I felt it.

My myasthenia gravis diagnosis came shortly after, but even then it only affected my eyes for the first 7 months. I still carried my daughter downstairs to bed at night. I picked her up when she got hurt at the park. I carried her home when she fell asleep on the bus after a long day.

Now she’s significantly bigger. And now I’m weaker. Which makes those memories all the more precious. Every parent has to set their child down at some point and watch them walk away. I’m so glad that I was able to do that on my own terms.

Downtown when she was almost 4 years old. I’m wearing a beaded necklace we made together because she wanted to see what 100 looked like.

Kids and connections

Several years ago I had the following conversation with a grandma at the park while I was pushing my daughter on the swing (it was so odd that I wrote it down in my phone and have kept it since)…

Her: how old is she?

Me: 3 and a half

Her: you’re going to have another?

Me: no we’re done

Her: really? Just one?

Me: yep, one is perfect

Her: yeah they’re a lot of work, and if you don’t have family nearby to help it can be too much

Me: she’s been awesome and I’m really glad I have her

Pause….

Her: two is better

Me: well I have some health problems so one is just right for us

Her: oh… well if you have health problems…my daughter has thyroid problems… but she wants to have another one… but if you have no family around and you have health problems … (expectant pause)

Me: ……. (Walks away)

The photo is at the same park where this conversation took place, but several years earlier.

That’s how many of my conversations go with people when they find out we only have one child and plan to keep it that way. (Sometimes they seem downright hostile.) Thankfully it’s waning now that she’s 7 – I think people figure if we haven’t had another by now it’s a lost cause.

So it was so refreshing to have the opposite kind of conversation last week at work.

I work for an agency that supports people with disabilities. One of the men who use our services came into the office and I was helping him print some documents. As we worked we were making small talk.

And then it turned into big talk.

I’ve known this man for many years, since he was almost a child. I’ve seen him go through many ages and stages and grow up into a hard working, compassionate and kind young man. So it was totally fine when he asked “if you wanted to have another child now, could you?”

I answered “no, not really” and he immediately apologized and asked if it was okay that he asked.

He gave me an out from the conversation.

He gave me a chance to consent to the conversation.

I assured him it was fine to ask and I explained that I’m on medications that are incompatible with pregnancy and that aside from the meds, my muscles aren’t strong enough to carry a baby.

He asked a few more questions and then said “that sucks.” I tried to brush it off but he persisted by explaining that he remembered from a dozen years ago that I wanted to have lots of kids. He reiterated “that really sucks.”

It was such a meaningful interaction because he asked, he really listened, and he had no agenda. He just used the moment to connect.

I hope that I can remember that when I’m in those moments with people. When they share their story, I want to simply connect. No pat answers, no persuasion, no pushing to get what I want from the exchange.

Just connection.

Rhythm

Summer has come and gone, and usually that makes me a bit sad. I’ve always been a summer girl, loving the heat and the adventure.

Childhood summers were spent at camp, in the pool, in the fields, in the barns, making paper outside with my mom, playing with my siblings and neighbours, wild and free.

Early adulthood summers were spent working hard and playing hard. Multiple jobs in multiple cities, friends spread far and wide, driving everywhere all the time. Picking up shifts at my various jobs sporadically, carrying a veritable wardrobe in my trunk, spontaneously taking mini toad trips.

Then my years lost their rhythm. When there’s no school shifts in season are more subtle, less seismic. So summers were pleasant, long, slow. Camping, visiting family, making the most of long weekends, going to outdoor markets, walking downtown, but normal life continued parallel to the summertime fun.

Now there’s school in our lives again. Has been for 4 years, but during the first two I was sick and not working so having the summer break from school was a welcome relief to the loneliness and monotony of my long days on my own. Summer was a bright spot filled with so much togetherness. Play dates at the park, bus trips downtown, splash pads, movie days lying on the couch.

These past two summers, while I’m working and school is out have felt loud and bright and hot and chaotic. I can’t handle the heat with with my MG which makes me long for the cooler days of fall. And though I don’t have many set routines I do have regular rhythms to my life which I’m valuing more and more. Summer feels like taking a neatly stacked deck of cards and tossing it in the air. It’s fun while it lasts but it takes a while to pull it back together.

So I am appreciating September. Long quiet days at home again to slowly pick up all my cards. A bit of laundry, a bit of cleaning. Purging cupboards and closets, shopping for gaps in our wardrobes, reconnecting with local friends and resuming our regular rhythms. Catching up with our local librarians, getting back to our church community, being together as a family again.

Familiar and wonderful.

Camping

Sitting alone, knitting by the fire, I can hear the chatter of children as they wind down and try to sleep. Footsteps crunch on the gravel roads as flashlights pass by. Someone uses a manual pump to inflate an air mattress; the kind that squeaks with each press of your foot.

These are the sounds of my childhood.

Sitting alone, surrounded by dark, I feel the warmth of the flames, the cool air on my face. The camp chair beneath me. A full belly within me; hotdogs, chips and s’mores.

These are the sensations of comfort.

Sitting alone, my eyes getting heavy, I smell those scents only found in this setting. Leftover barbeque, pine trees, river water, trampled down dirt, my freshly washed hoodie.

These are the smells of home.

Sitting alone, but so aware of my people close by in tents, I feel my heart full. The setting reminds me of my parents, my siblings, my family of origin. My early life was warm, safe and full of love.

Sitting here, I realize how lucky I was to grow up that way, and how blessed I am to have found the same thing in adulthood.

Sitting alone in this moment, but as always, surrounded by love.

Through her eyes

Every summer my friends and I, “The Ladies” or the Craft Night Crew, go for high tea at a local historical estate/museum. We sit on the lawn and eat tiny sandwiches and drink tea from beautifully mismatched vintage China. We eat too many desserts and we take group photos.

This year some of our daughters joined us and as the afternoon wore on, mine was getting a bit impatient. Summer holidays are full of hot days, late nights, sugary treats, relaxed rules and lots of visitors. It all starts to become a bit much and normally patient little girls (and mums) start to lose their cool a bit quicker.

In an effort to keep her entertained so I could continue chatting with my friends I passed her my camera. It worked. The little girls ran around the grounds staging photos and snapping closeups.

62 photos were taken and it was fascinating to see what she captured. There were unintelligible closeups of tablecloths, fingertips, and carpets. There were artfully arranged shots of tea cups and tea activities. There were her friends running and smiling and twirling. And there was me.

8 times I found myself in her photos. Usually just a portion of me. A skirt, a torso, a purse. Only once did she stop and ask me to smile. All the rest were candid and choppy.

But isn’t that how mothers are? Ever present, looming large, or hovering in the background. So familiar we don’t always stop to look but always we’re seeing them. They’re in every moment. Their voice becomes our internal voice, their expressions cross our own faces, their words come out of our mouths.

What a treat to see the world, and myself, through my daughter’s eyes.

Limited Edition

If you have young kids you’re probably familiar with the current trend in toys which is to collect small figures that are part of a series. Shopkins, Pikmi Pops, Mini Hatchimals, Surprizimals, Mini Mixi Qs, etc.

They often come in blind bags, or eggs, or some other concealing packaging so you don’t know what you’re going to get, and each one comes with a printed list of all the characters in the set.

Each character is coded as either common, rare, ultra rare, or – the most prized and coveted – limited edition. (Or some variation of this ranking system.) Much discussion goes on about how many toys one owns in each of these categories and status is ascribed.

None of this actually matters except that you need this context to understand the world I live in as the mother of an almost 7 year old.

. . .

Last week my daughter and I were shopping and as we walked across the parking lot she said to me “it’s cool to have a Mum who uses a cane. Not many other mums use canes. And it’s cool to have a Mum who takes needles all the time. It’s kind of rare.”

I explained that diabetes is a common disease but that Myasthenia Gravis is a rare disease. And then she said “so having both is, like, ultra rare…. actually it’s like you’re Limited Edition! Most mums are just common or rare so I’m lucky!”

I think I’m the lucky one. To have someone who sees the things I consider deficits as assets instead is rare gift.

As we were driving home from church one day, she asked if she could take a picture of me. No reason, she just wanted one. I almost said no because I had my eye patch on and was feeling super limp. But then I realized that she doesn’t see my bad days. She just sees her mum. So I said yes.

Beautiful

Today as she hugged me she buried her little fingertips into the folds of skin at the back of neck and told me how much she loved the feeling.

Last week she buried her face in my neck and told me it was so beautiful.

When prednisone gave me moonface she repeatedly told me how much she loved my puffy cheeks. In her words my medicine did “two good things: it makes your muscles stronger, and it makes you cuter!”

She routinely wraps her arms around me, plants her face right in my middle and declares her love for my squishy belly (we can thank my immunoglobulin infusions for that).

She crawls into bed in the early mornings and creeps her hands under my shirt to rub and smoosh my soft belly rolls.

She believes I am beautiful and so I believe it too.