budget blues

I’m living with angst. And no, that’s not a veiled way of describing my husband, children or dog.

I never thought being the parent of children with disabilities meant I’d be so keyed up for ministry announcements- heck, anytime the government makes an announcement, I’m listening. I now have new.ontario.ca on my list of favourites.

The last time we had a major shift in provincial leadership was 2003, the year my second of four kids was born. At that time, I was not the parent of two medically-fragile children. I paid minimal attention to the budget changes, and I was frankly more interested in anything but the budget. It didn’t seem to directly impact my day. If I wanted to learn more about politics, I read the paper, watched T.V. or listened to the radio. If I wanted to.

Fast forward 15 years, and we have new leadership in the province. I’m a mom of four girls now- two who are medically-fragile with complex care needs. Being a mom of children with disabilities means the budget and any government announcement matters. A lot. Fifteen years later also means I learn sooner from my phone than the newsstand - and this instant hit of news means I have the option of tweeting, tagging, and posting directly to our leadership.

And what do I trust more - what I see on my phone or what I experience in my day-to-day? Sometimes, the conversations on social media only serve to feed a narrative that hasn’t happened. As Brene Brown would describe it, with all the uncertainty for the future, we’re starting to make up and believe stories that haven’t happened yet.

As a parent of children who live with disabilities, this is my angst:

It’s personal. Each parent and caregiver and adult living with disability has a story to tell. It often includes layers of pain and promise. For many, there is little to no safe space offered for exhaling and talking through the very real daily challenges. When there’s no space to process the heartache, bitterness and anger can take root.

With all the significant changes happening one after another, it feels like we are functioning in the reactive stance. It feels like we are moving towards divisive advocacy - instead of diverse collaboration. Why does it have to be either/or? Why can’t it be both/and?

I want our government, our public service providers, and our private sector to all play a role in supporting families who have children with disabilities. When everyone is involved, we hold ourselves accountable to the greater picture - that of a future where everyone can access the supports they need to thrive according to their own abilities.

I like my local public schools. I want to see them accessible and successful with all students. I like my local faith community schools. I want to see them accessible and successful with all students. I want to see funding available to support families of all disabilities, and I want to see accessibility and success for all through our publicly funded children’s treatment centres.

I wonder what a barrier free Ontario looks like where everyone can access the public and private spaces. The Legislature voted unanimously to create a barrier-free Ontario 14 years ago. Referencing the Honourable David Onley’s report, we’re behind schedule.

I wonder what public service provision for children of all disabilities with additional directly funded enhanced wraparound care looks like. Our family depended on our local Children’s Treatment Centre in those early years; if I had to source out my children’s therapies, I would have been lost. Now that I’ve learned to navigate the system, I am better positioned to access supports with less leading and guiding. I wouldn’t be here without that essential public service provision. However we support families and individuals must be inclusive of all abilities, capacities, competencies, and geography.

Reflecting on the response of families and individuals to recent government changes with social services and disabilities, what if all service providers were mandated to have a family/patient/client advisory council that offered perspective which spoke directly to outcomes, to hear from families and from individuals who live with disability?

What if there was equity in accessing resources and equipment for students with disabilities regardless of how they grow - and where they go to school? All school systems have the potential to carry the responsibility and the joy of caring for and supporting Ontario’s children.

I wonder if there’d be more work accomplished if the Question Period wasn’t televised. It’s been so emotionally charged lately; I end up turning it off, thankful that at least Mr. Speaker can get everyone to stop yelling. I’d like to vote for him next time.

So, yes, I’m paying attention more than ever to what’s happening in our provincial landscape as it relates to policy, decision-making, and budget. It’s a story that’s unfolding, and I am a part of you. So are you. What’s in this chapter for us?

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Janneke turns 10! We celebrate our littlest and often loudest today. She’s coping with a cold, but she is still her cheeky self.

Today also marks 10 years of blogging. Our first post was several days after her birth, in an effort to keep family and friends informed. It didn’t take long for both Ralph and I to realize that writing was cathartic. So, we kept writing.

For this entry, I’m going to recall Ralph’s letter to Janneke on her 6th birthday. Ordinarily, birthdays are filled with cheer and maybe cake. Though we do celebrate - but with pi(e) instead of cake on Janneke’s birthday (3.14), these days are filled with mixed feelings. Feelings of relief for the years gained, feelings of thanksgiving for all the support from so many along the way, but also feelings of sadness - mindful of the impact living with disability has on our family as a whole. As the years pass, there are new challenges, and we try to take this one day at a time… while trying to choose to see the joy. Thanks for reading our story and for sharing in our journey.


Dear Janneke Grace,

On this night, in the middle of the night, exactly six years ago, your mother and I travelled to West Lincoln Memorial Hospital. This was the same hospital where, long ago, I was born, and where your older sister Sophia was born. We were anticipating your birth, and we were excited to meet the midwives - and finally meet you!

Months before you were born, we announced your imminent arrival via Facebook with the status "Ralph thinks Rachel will be a great big sister."

We still think that.

But your arrival and the six years that followed took your mother and I on a path that we were neither prepared for nor wanted to travel.

There was a full moon that night.  I remember noticing it as we were driving down the QEW to Grimsby.  It's funny how I remember the little details of that night vividly, and then there are other things I completely forget. I have trouble remembering the faces and names of the midwives, nurses, doctors, and paramedics we met on your first day. And we met many. But I remember where I was standing when I called Oma, Grandpa, and Mrs. Elzinga (Carolyn) to tell them about your birth.  The full moon was fading, and the sun was coming up as I stood alone on the sidewalk in front of the hospital, tearfully announcing your arrival before I lost the energy to tell anyone else.

It was a difficult birth for Mom...and for you.  For a moment, that night, we thought we might never get the chance to meet you.  You barely had the chance to take your first breath, but through the work of some wonderfully talented midwives, you survived a very difficult birth.  We waited to hear your first cry, so we would know everything was ok.

We waited all day.

Outside of a few moans, you never cried on your birth day.

Moments after your birth, the midwives placed you in a warmer in the birthing room. The midwives quickly called the doctor and were relieved when you started breathing on your own.  Your face was bruised and purple from a difficult birth, but the first thing that I noticed about you in the warmer was your hands.  Your hands were just like your sister Rachel's.

Mom was eager to know how you were, even though she was physically and emotionally spent.  She couldn't see you, so she asked me how you were doing. I could barely speak, but my first words to Mom after you were born were, "She's just like Rachel."

Not too long ago, I was asked, "What was the hardest day of your life?" I didn't have to think long: March 14, 2009. 

While you were in the warmer, I remember saying to Mom...with tears in my eyes, that it isn't fair to you that I'm so incredibly sad on your Birth Day. "It isn't fair to Janneke. Parents should be happy when their child is born."

We did not have the same sadness with Rachel's birth as we did with you. But I was so incredibly sad, and that sadness still visits me from time to time.

We spent most of your first day trying to figure out what hospital you were going to next.  Later that day, it was decided that you would be transferred to SickKids in Toronto. Just before midnight, on your first day, we watched a medical transport team pack you up and put you in an ambulance bound for Toronto. Your mother and I drove the opposite direction and went home.

The next day, early Sunday morning, I got up and spent the day with you in Toronto.  Mom stayed home to rest. I spent most of that day beside your bed, talking with nurses, doctors, and specialists. At one point, when I was feeling very overwhelmed, I decided to go for a walk outside the hospital.  I didn't get too far.
I sat down at the corner of Gerrard and Elizabeth and wept.  It seemed like time was standing still, and I just cried and cried.  I'm not sure how long I sat there. Given the location, I am sure I was not the first person to weep at that corner, and I am sure I wasn't the last. When Mom and I have to take you and Rachel to Toronto, I always take a second glance at that spot.

This may sound funny, but sometimes I am saddened about my sadness regarding your birth. Your arrival, even though it brought me to tears, has profoundly impacted so many people. You bring a smile to the face of people you meet. The world would be a better place if more people could do that. Your presence has shaped your older three sisters and your mother and I in so many good and positive ways.  And you give the best hugs.

You are similar to your sister Rachel... but you are not "just like Rachel" like I thought you were on your first day. You have a mind of your own, and you are definitely a character, wandering around the house in your walker, without a care in the world. You are loved, and you bring grace and joy wherever you go.

I am not sure you will be able to read or understand this letter.  But I am happy you are a part of our family.

I love you to the moon and back, Janneke.

Happy Birthday.

Love, Dad.









On the heels of Rare Disease Day (Feb 28), I offer this story. It’s a story of gratitude about two girls, 12 year-old Rachel and 9 year-old Janneke who live with a rare syndrome. The girls cannot say thanks, but in their own ways, foster a spirit of thanksgiving in their caregivers and family. 

In late August 2018, our team of docs at Mac initiated the idea of a wish with the Children’s Wish Foundation of Canada. As many of you know, both Rachel and Janneke were born with significant medical and developmental needs that compromise their daily living. They were diagnosed with a rare disease, Chitayat-Hall Syndrome, that officially affects three families.

They are unable to walk, talk, or feed themselves, and these challenges both discourage and motivate our family’s desire to live with joy. The girls’ needs make travel extra complicated, so we often look for ways to create quality time at home. Adding to the desire to find something enjoyable, we also must consider their chronic pain issues due limited mobility.

It’s now February, and there’s a jacuzzi in our backyard. The blessing of a jacuzzi is twofold: it allows our family to enjoy time at home together, and it also serves to soothe the physical pain, as the water and jets relax their tightened muscles. Together - the Children’s Wish Foundation of Canada and Jacuzzi Ontario (Ancaster), with help from Blue Spruce Homes for the cement pad and Floyd Elzinga for the lift system - this wish was granted.

So, here’s our public thank you. Two small words with incredible depth (and it is a deep tub!). We cannot be certain of how much time we will have with our girls, but we can be certain the days will be filled with good and waterful memories.



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

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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.

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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.

peace.



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.




#sparkjoy

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

forth.









































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.

onward.