Each morning, I am reminded of the word vulnerability. It’s in the eyes of our Rachel as she looks up at me, watching me take the cloth to bathe her skin. It’s in her muscle tone that either resists or allows me to move her arms and legs into her clothes. It’s in her hands as she either pushes me away or pats my shoulder, as I move her to get the sling underneath her body in preparation for transfer from bed to wheelchair.

In those moments, I am affected by her vulnerability. She trusts me completely. She smiles as I strain to move her growing frame - and doesn’t have reason to believe that I will do anything other than provide my best care. Ultimately, she allows me to control the pace at which we go through the morning routine.

Mind you, there are some mornings when I rush through the motions of getting her and Janneke ready. And Rachel catches on quickly to my short temper and frustration. She grimaces sooner than smiles and sometimes frowns at me. I all but hear her voice saying, “Settle down, Mom. Take it one step at a time.”

Thanks, kid.

Our Janneke, on the other hand, is full of zip and giggles from the moment she wakes up. She’s knocking on her bed, hollering out, as if I need a reminder that she needs to get ready. Sometimes, she’ll sit up and bounce, and other times, she’ll turn to her side, propping an elbow underneath in a pose. She then shakes her leg and head together like one of those ladies from the 1980s T.V. program “20 Minute Workout.” If she could, I’d hear, “three more, two more, one more - and take it from the top.”

When I sit her up to get her dressed, she shakes her legs and arms again, poking and gently hitting me in a rhythm all her own -all the while laughing. Her free and emotional spirit is contagious, and I soon find myself laughing with her. It’s a wonder that I can get her properly dressed with her arms and legs flying and body dancing.

That too is vulnerability.

Which makes me think about the rest of us - and how we display (or don’t display) vulnerability.

Leaving the last word to this quote:

Communion is at the heart of the mystery of our humanity …Communion, which implies the security and insecurity of trust, is a constant struggle against all the powers of fear and selfishness in us, as well as the seemingly resilient human need to control another person. To a certain extent we lose control in our own lives when we are open to others. Communion of hearts is a beautiful but also a dangerous thing. Beautiful because it is a new form of liberation; it brings a new joy because we are no longer alone. We are close even if we are far away. Dangerous because letting down our inner barriers means that we can be easily hurt. Communion makes us vulnerable. Jean Vanier


disruptor: a person or thing that prevents something, especially a system, process, or event, from continuing as usual or as expected

This word has come to mind often in the past thirteen years. Choosing to expand our family back in 2005 didn’t include the word disruptor. It didn’t include disability, depression or discouragement.

With the arrival of Rachel in 2006, our lives were disrupted. Our dreams were challenged, and yes, we had to include disability, depression and discouragement.

But there was also love. A persistent and stubborn faith that God remains present. There was community. And there was determination to find a way through and with these challenges.

All of this was revisited with the arrival of Janneke in 2009, and now we are approaching her 10th birthday next month.

The news about Ontario’s Autism Program this week brought the word disruptor to mind again.

Many families and public service providers were caught off guard with the seismic changes to delivery: The very limited funding for often expensive-but-necessary therapy/services for autism will be allocated to families according to family income -and not according to the needs of the child. This money, referred to as a Childhood Budget, is to be used for private services, forcing public service providers to reconsider their way of supporting families.

It would seem disability (visible and invisible) remains a social assistance issue - and not a health issue.

Though funding can purchase a service for a short time, it cannot easily purchase a system of support for a family who will be caring for their child(ren) for a lifetime.

I can only speak for myself, one who has chosen to love and care for my kids who live with disability. I know I am privileged to have a community of support, and yet certain questions remain:

Who is going to help us take care of our kids?

How does our provincial culture support life - and a good one, from beginning to end?

Who is responsible for caring for the vulnerable?

Who helps children and families who live with disability thrive?

Who supports our children once they grow into adults?

These are the questions that sit with me today.

To share:

Neighbourhood Learns ASL:

To attend:

Grief’s Gift Through Ryan’s Rays:

To consider:

No Such Thing As a Bad Kid:

(thumbnail image: Elma Regnerus)

Snow days mean slow days.

The cold weather, canceled school and snow piles add to the challenge of getting outside for fresh air. So, we bide our time, soaking in the sun by the window, listen to audio books and music, and catch up on nature programs on Netflix and YouTube (ocean life videos!). Kids seem to prefer those over Fuller House, et al. Phew.

I know this is just a season, and before we know it, we’ll be back outside. Today, as I watched Janneke swing in the sun, I thought about how things used to be.


And I mean back in the institutional days… when kids like mine were permanently shut in. We’ve come a long way, baby. And we still have room to grow and do better.

Lately, there’s been more uncertainty about the programs and services our province offers for families and adults with disabilities. No one deserves to be shut in or kept from on purpose - due to lack of care or lack of funding.

I love the motivation of the parents proposing (with MPP Lisa Gretzky) Noah and Gregory’s Law.

And the perspective of Ceilidh Corcoran from Edmonton.

living. with choices. opportunities to thrive. for all.

held captive.

She was.

They are.

I have mixed feelings about such impressive sea creatures being housed in large aquariums, yet I am thankful for the accessible opportunity my kid has to experience them - and be mesmerized.

As I watch her classmates chatter excitedly about the sharks, turtles and stingrays, I hope their enthusiasm in this experience generates more will to become better friends with our planet and all its creatures.


on gratitude and joy - but not about cleaning.

I’ve been stuck on this quote this week:

In 12 years of research, I have never interviewed a single person with the capacity to really experience joy who does not also actively practice gratitude.
— Brene Brown

It’s hard to be grateful when things aren’t great. The part about things not being great happens here from time to time. Given that, I am well-aware the lens through which I see my day greatly impacts my ability to function and impacts my relationships with others.

Maybe it’s kind of like when you were a kid and you called your brother Stupid - and as you sat on the stairs for an extended period of time before such things were officially called time outs, you had to think of three positive attributes of your brother to dull the sting of Stupid.

family pic January 1979 , taken quite possibly exactly 40 years ago, quite possibly after I called my brother a name and quite possibly just before I had to sit on the stairs. Possibly.

family pic January 1979, taken quite possibly exactly 40 years ago, quite possibly after I called my brother a name and quite possibly just before I had to sit on the stairs. Possibly.

Being grateful, even when things aren’t great, is an attempt to retrain the brain, adjust the lens - and dull the sting.

Things don’t go as planned often. And some things are just out of our control. Truth.

So.. we are either stuck in this journey, or we can swerve around (or climb out of) the ruts in the road, trusting that there is joy ahead. And while we go, we look for glimpses of that joy… trying to give thanks in all circumstances. In response, I’ve been trying to acknowledge my thanks, whether listing three things on paper or just saying it out loud. Yesterday, it was for our dog Luna who ate six of our breakfast muffins off the kitchen counter - bringing a much-needed laugh to our family. Today, it was for last night’s respite worker who thought to lay out the school clothes for the girls - giving me one less task to do early this morning.

Chin up.


I can’t help but notice the recent trend of Marie Kondo’s work with tidying and organizing, particularly in this month of January. I was intrigued because of the words in her mission statement: help more people tidy their spaces by choosing joy.

Choosing joy has been a mantra in this home, particularly since the arrival of Rachel, our first medically fragile kid with complex care issues - and then reinforced (read also in desperation) with the arrival of Janneke, our second medically fragile kid with complex care issues. The term choosing joy came from my maternal grandmother who also faced significant challenges with the birth and life of her son born in 1951 with developmental and physical delays.

The idea of tidying leading to joy does connect with something in me; though the method of sorting and organizing has evolved over the years, I guess it comes down to this truth: In welcoming the disorder that Rachel and Janneke present, I lean on order in other parts of my life.

So who is Marie Kondo? She’s someone who sees joy in cleaning up crap and organizing shit. Ok, that’s maybe too strong. Marie Kondo is like a tiny dancer who gracefully pirouettes into homes and points out the obvious: seeing what you have, understanding what you don’t need, giving gratitude for what you have and what you don’t need, acknowledging the relationship many of us have between our emotions and our things - and sorting all of it into purposeful places.

What would it look like to have Marie Kondo meet some of the older women in my life, such as my grandmothers, my mother-in-law Mina, or my neighbour Annie? These women were raised in the Netherlands, Russia and Germany in the earlier part of the 20th century. All these women experienced pain and loss with their villages, homes, families and endured interruptions of all kinds -due to war, starvation, and persecution. Following WW2, they immigrated to Canada and had to make-do with very little. This meant everything was repurposed, and that concept filtered down through the generations.

In my childhood, Ziploc bags were washed and reused; containers and cans were used to organize drawers, cupboards and leftover meals; bread bags kept your socks dry when you wore boots, and anything worn or torn was either mended or divided into material for patches or future sewing projects. Those thrifty lessons were formative; though I can’t sew, and I no longer store snacks in old yogurt containers, I still wash out my Ziploc bags.

The sense of repurposing can lead to a few problems though. I remember helping my neighbour clean out her basement one day, only to discover she had kept almost every jam and jelly jar she’d ever used. She figured there might be a purpose for it someday, so she rinsed out and stored them in boxes upon boxes in her basement. Her potting shed housed what appeared to be enough fruit baskets for a farm to collect and sell several crops of berries.

Rather than store (or hoard?), Marie Kondo says if an item doesn’t spark joy, you thank it and either throw it away or pass it on. In December 2000, Ralph and I visited China, and we brought his mom table napkins as a gift. Some time later, when I popped in for tea, she proudly showed me a new bag she sewed. It was made of the table napkins. Mina Pot-ism: When an item doesn’t spark joy, make it into one that does. #sewjoy

The stories of repurposing and make-do from my family’s history spark motivation for me -and Marie Kondo does too, reminding me to be conscious of what we collect and own.

And while Kondo’s work trends the virtual highways, I also can’t help but notice the news about a woman named Crystal who died retrieving clothes out of a donation bin, so she could barter for her basic needs. This is not how it’s supposed to be. While we sort our possessions into Marie Kondo boxes with names such as Balance, Clarity, Harmony, and Wonder, others are seeking a space to call home. #sparkjoy #sparkawareness #affordablehousing


to persist.

My theory is that when you are driving ninety miles per hour, you stay ahead of much of the pain. But pull into a rest stop, and disappointment catches up and parks beside you. Disappointment in others. Disappointment in yourself. Others’ disappointment in you. People you cared about who moved out of your life. Sadness over unmet expectations. And weariness. Sometimes you don’t realize how tired you’ve become until you stop moving.

So writes Jeff Manion in his book, Dream Big, Think Small. His particular piece on recovery has struck a chord with me - as has this quote:

After major events or an unbroken string of demanding challenges, the soul pleads for repair.

He’s a pastor - and you don’t need to be in his congregation to “get” the reality of his words.

This idea of the soul pleading for repair is… well, so familiar.

Manion writes of the importance of seeking out restorative practices for our souls. Ideally, we ought to consider what can bring renewal before we are completely undone. Maybe this is a pipe dream for some who are already spent and trying to claw their way out of the hole of exhaustion.

Manion shares how in preparing to run a marathon, one must also plan the post-marathon work. Because if there is no plan, the body will just give in to what feels right…. for example, one might want to collapse into a hot tub and just sleep after running such a long distance. But, the body actually needs a cold soak and stretching first.

I don’t run marathons. But I do know the feeling of wanting to unwind with what seems an easy fix at the end of a long day (which sometimes feels like a marathon). Maybe for some of us, endlessly scrolling through social media seems “deserved” but is it?…. Does it truly fill the soul, or are we being deceived (and further exhausted) by what is pictured? Or maybe the scrolling only shows more stories of injustice, sorrow, inequity…squashing any seeds of hope that maybe things might get easier or better.

I don’t know if I necessarily have a resolution or a word or a mantra or a goal, but my hope is to persist at hearing my soul’s pleas, to figure out what I ought to do vs what I want to do when it comes to rest and renewal.


on restarts and new beginnings.

Happy New Year. And all the best with that.

(Not so new, parts of this post were published previously here.)

In their schools, Rachel and Janneke have individualized education plans (IEP). The IEP goals, created or renewed each school year, are specific to the girls’ needs and tailored to their strengths and weaknesses. Figuring out what goals are possible and what goals are beyond their reach when no one really knows the extent of their capabilities is daunting.

action shot of Janneke’s IEP meeting

action shot of Janneke’s IEP meeting

I reference those IEPs because it’s almost January, the time of year when many people are determined to make individualized goals (resolutions!) for the new year. The most common relate to health - including but not limited to fitness and weight loss.

Falling short

January seems to hold much hope for these aspirations, but often January’s determination becomes March’s frustration becomes August’s surrender becomes late December’s return to resolve once again. Statistics suggest less than 10% of us actually achieve and hold those resolutions.

Often, resolutions convey what we believe to be ideal, whether we reach that goal or not. Not only does that ideal reflect how we see ourselves, it also filters into how we see others - and what we believe to be normal in our culture.

What is The Ideal?

What happens when we don’t fulfill our resolutions? Does that change how we see ourselves? Does that change how we see others? What are we communicating when we are forever (and in vain) striving for some ideal?

American writer Nicholas Carr references the less-than-authentic self within the context of social media. He writes, “We project an idealized version of the self, formed for social consumption, and the reflection we receive, continually updated, reveals how the image was actually interpreted by society. We… then adjust the projection in response to the reflection, in hopes of bringing the reflection closer to the projected ideal.”

Ideal vs Real
As a mom to two medically-fragile daughters and two neurotypical daughters, I am aware of what is projected as ideal developmental milestones.  I’m also aware that when we view disability only through the lens of a medical model, we see disability as a problem that doesn’t meet milestones and has a preconceived trajectory requiring treatment. The disability needs to be fixed.  

I prefer the social model of disability that says limitations can also lead to possibilities. There are legitimate concerns, but therapy can support a new normal, acknowledging that often there is no “fix.” Understanding disability in a social context means that goals can be made and attained together because we don’t measure with an impossible ideal; we measure according to what is observed and what exists in the realm between possibilities and limitations for each unique person within the context of community.

I wonder if, over time, we both intentionally and inadvertently develop an excessive admiration for an ideal and for a standard of normal, isolating those who don’t fit from those who fit.

Though obvious, we must be reminded: How we see disability… how we see LIFE impacts how we see ourselves and how we see each other.

Disability is a factor in the cult of normalcy.
— Thomas Reynolds, A Vulnerable Communion

(photo credit for thumbnail: Emily Pot)

on longing and hope.

Hope deferred makes the heart sick,
but a longing fulfilled is a tree of life. 
— Proverbs 13:12

I thought I could write something deep and meaningful about longing and hope. But the thoughts aren’t sorting themselves today. I’m tangled up in the emotions that come when I hear stories sorrow and angst, stories of children and families impacted by loss, disability, mental health, poverty, and isolation. I know that hope can breed resilience, providing meaning to keep going. But sometimes, hope deferred makes the heart so very sick.

So may we see each other, help each other - and hope WITH each other.

My hope is that 2019 brings a stronger sense of community and belonging for all. And instead of writing something, I’m sharing a beautiful video that is worth watching more than once.


(photo credit for Pot blog thumbnail: Jennifer Elizabeth Photography)



It’s the idea of coming alongside someone in their journey. Dr. Alan Wolfelt refers to it as the practice of entering the wilderness of the soul with another human. The word literally refers to “with bread”… makes me think of the fellowship experienced when we sit down for a meal. Which seems rare these days, given the drive-thrus and coffees-to-go.

Years ago, when my friend Kevin and I would return to university after a weekend at our respective homes, we’d often be driving into the sunset. To help pass the time for the long drive, we came up with this game where one of us would start by pointing out the “land” in the clouds; we’d take turns pointing out the outline of the land and the water that suddenly seemed so real, highlighted by the sun’s rays and the cloud formations. The imaginative exercise of driving towards that faraway wilderness would take over serious conversation - or any conversation.

There’s something pretty sweet about keeping quiet company. And that quiet company can be a gift to someone who’s on a difficult journey.

The human soul doesn’t want to be advised or fixed.... It simply wants to be witnessed — to be seen, heard and companioned exactly as it is. When we make that kind of deep bow to the soul of a suffering person, our respect reinforces the soul’s healing resources.
— Parker Palmer

Here’s more from Palmer: The Gift of Presence, The Perils of Advice

And from Yahoo: Valuable gifts for a caregiver (that cannot be purchased)

from a twitter feed of a physician at Johns Hopkins hospital: I believe in you.

And this clever piece that takes the concept of companioning and adds a challenge: