Saturday, November 28, 2015

Dates, and times, and places...

We have a VHS tape downstairs that has a handwritten label which reads "March 7, 1997" followed by a cutesy heart. It is our home-made wedding video, filmed by my brother-in-law and inaccurately labelled by my wife after the big day.

We actually got married on March 8. 

Sara has many incredible gifts, especially when it comes to written and spoken words. It's numbers that give her trouble.

Perhaps more surprising than the label is the fact that it took us about 15 years before we watched the video. A few short months after our wedding, Sara's mom was killed in a car accident. When we think back to our wedding, we have trouble separating it from Sara's mom's funeral...same church, same place in the church where we were extended congratulations/condolences, and a lot of the same people.

Because the two events were so blurred in our memory, we never really wanted to watch the happy one.

Dates, times, and places have a way of searing into our memory when significant events occur. And when those dates and places show up again, they can trigger a flood of memories and emotions.

Two years ago this weekend, I watched my father take his last earthly breaths at the same location where I and two of my daughters took our first. West Lincoln Memorial Hospital is full of nostalgia and complicated emotions for me. And this time of year brings memories of saying good bye.

At my dad's funeral, my sister (Joanne) and I spoke on behalf of our siblings, in honour of Dad. We thought we would post the eulogy here, on our family's blog.


How do you summarize a life of 85 years in a short eulogy? Gerrit Pot was a simple farmer with a deep faith. A shy, quiet man who was loved by many. A smart aleck with a sincere and honest faith. A man who wanted no part in any argument regarding church theology, doctrine or order, but faithfully served and attended as he was able. In many ways, he was a broken man, in his later years physically and at times emotionally, but the light of Christ shone through him. Broken, but redeemed.

This past Wednesday, my wife Sara had the opportunity to be present at Shalom Manor when Dad was transferred to West Lincoln Memorial Hospital. He had just suffered what we now know was a heart attack, and he was struggling. He was on oxygen and two nurses were assisting to prepare him for the paremedics who would be arriving shortly. When the paramedics arrived, Sara ushered Mom out of the room. The nurses and paramedics were going over Dad’s vital signs and the emotion and reality of the moment was clear on the faces of the staff and the tears of Mom. From outside the room, Mom and Sara heard questions about medication and health of the last few hours, and then the paramedics asked Dad a question directly. “Mr. Pot, How old are you?”

There was a pause, and both Sara and Mom clearly heard Dad say, “Guess.”

That was Dad. Though his body was failing, his spirit and humour were clearly not.

Dad grew up just outside the town of Diever in the province of Drenthe in the Netherlands. He was the 9th child born to Gerrit and Gesina Pot. His only younger sister, Tante Truus, is here with us today from Edmonton with her son, Bill. When asked about Dad’s life in Holland before he immigrated, Truus mentioned how he often had to run after things for his brothers that they forgot or needed. "Gerrit, go get the shovel" or 'go, get me the fork." Then when the work was done, his brothers said that Gerrit didn't do anything. 

It couldn’t have been easy being the youngest of four brothers.

All of us children have different memories of Dad. But a number of ideas, stories and events stand out for all of us. As sons, looking back, we are amazed at what Dad allowed us to do at a young age. Perhaps life for an immigrant farmer made it necessary for sons to take on responsibilities, but there was always a belief by Dad that we were capable. As six year olds, it was expected that we could drive a tractor. On the farm, although the ages are disputed at every family gathering, Harvey ran the farm by himself for ten days when he was 16 when Mom and Dad went to Holland, Jim broke his first haybine at age 12, and Bernie milked all of the cows by himself when he was in diapers. I am not sure it was always wise, but Dad had a great appreciation for allowing his kids to learn by doing.

When Bernie and Jim were pre-teens, they raised rabbits for a time, and an Italian gentleman would come by every few weeks to purchase any young 4-5 pound rabbits that they had. This man would then sell them to the Italian community in Toronto. The feed and hay would come from Dad who would allow his sons to negotiate a fair price with the travelling rabbit dealer, and he would just stand back and observe from a distance. Bernie and Jim would keep the proceeds and wonder why so many people in Toronto wanted 4-5 lb. pet rabbits. Dad was proud to see his sons grow in confidence and ability.

Dad was a hard-working man, and he expected the same of his kids. He had a quiet determination and resolve in building up the farm in Bismarck. This same resolve could be seen in his ability to play nigensticken, a simple game we played often on a hand drawn piece of cardboard with black and white buttons. I have never seen him lose a game. Mom even commented that he played a game early last week with her at Shalom Manor. Even though his health was deteriorating, he was still able to win handily.

Vacations were somewhat of a rarity in the Pot household, as there was always work to do on the farm, no matter the season. When our family would take an annual camping trip to Byng Park with the Schilstras, the Attemas, the Fledderus' and other Dutch immigrant farming families , Dad’s vacation usually looked like this:

Get up at 5 A.M. when it was still dark, take at least one son along and drive home, milk and feed cows, travel back to Byng around 10 am, sit around campsite, have lunch, drink some beer, maybe fish, (although I’ve never seen him catch one), drive back home at 5 P.M., milk and feed cows, come back to campsite around 8:30 P.M., sit around campfire and tell stories and jokes with the other farmers, go to bed, repeat. When Dad was on vacation, he only worked 9 hours each day.

I am not sure that he was very well rested after a week at Byng.

Other than trips back home to Holland on the rare occasion, those were the holidays that Dad took while he was farming.

Dad’s tireless work ethic eventually got the better of him. In 1984, he became permanently disabled due to some complications with severely herniated discs in his back. Dad spent the last 30 years of his life dealing with pain and significant disability. Sadly, I only have vague memories of Dad the farmer, and none of the grandchildren present here knew Opa without a cane, a scooter, or a wheelchair.

But even through that, although there were definitely times when the brokeness was evident more than the light, he never wanted to be a burden to anyone and made all his kids and grandchildren his focus when they were present. He loved to be with them.

Over the last number of years, I have grown to appreciate his love for all his grandchildren. He developed a special bond with all of his grandchildren in some way, but I was continually moved by how he cared for and coo-ed over my two youngest daughters, Rachel and Janneke. At family gatherings, while everyone was playing some silly game that someone had thought of, Dad would sit with Rachel and Janneke and simply enjoy their presence. And Rachel and Janneke enjoyed him. He would talk with them and it seemed that they had a common, unspoken bond, that the rest of us, able bodied people are incapable of having with R and J. Dad and Opa will be missed..


Dad made each of us feel like we were the only daughter he had.

But then again he made each grandchild feel like they were the special one. It was not what he said to us, but how he said it. He really did not say much very often because that's what Mom did best. :) He would say, "Ah It's GRACE" or "AH JOANNE..." ...and he said it with a smile and a twinkle in his eye and would grab your hand if you were close. We will miss that. But even how special he made us all feel, he did have one special person he loved most of all- and that was MOM. He loved her dearly and he said it often. Usually with a smoochie kiss when Mom came to visit him at Shalom. (Which was everyday.) They say behind every good man, there is a strong woman- and Dad had a very strong woman in his life. Mom kept Dad going for 30 years after his accident. Think about that for a moment.

Mom tells me that she was attracted to Dad because of his deep love of Jesus. That, I think is a testament to the grandkids here today. They were in their teenage years when they met.

"I am the vine, you are the branches. If a man remains in me and I in him, he bears much fruit, apart from me you can do nothing." John 15:5.

This was Mom and Dad's wedding text.

Bearing much fruit, Dad and Mom were not rich in material possessions, but their love for God and their family was very evident and very rich. Dad’s family was his pride and joy, and he expressed his love for each and every one of us.

I remember having a conversation with my Dad when I was still quite young. I was probably helping him feed the calves or something because he had a pail. "You can fill it with many things," he said. He referred to rocks, pebbles, sand and then water. He told me that if you fill up your pail with small things first like sand water and pebbles, the pail will not have room for the large rocks – they just won’t fit in anymore. But if you put the rocks in first, then the pebbles, then the sand and then the water – it will all fit. The pail is like your life. The rocks he said are the important things – The biggest rock would be God of course and then family and friends; after that the less important things in your life. They will all fit into your life but you must remember to put the rocks in first.

Dad was a hard working farmer, but he always had time for us. I have fond memories of my Dad taking me to bed at night. First is play time. He would take me by the hands and flip me upside down. He called it an airplane ride. “Do you want to go to Holland?” I would giggle and laugh and Mom would say “ get the kids all excited...then they won’t sleep”.

50 years ago this week, Mom & Dad lost their first born son, Jerry, in a tragic accident when Jerry was only 6 years old. When Dad left us early last Friday morning, I kept thinking: Dad is in heaven now…. and when he sees Jerry again….. I’ll bet Dad will give him airplane rides.

Thursday, November 19, 2015


If it wasn't evident before, it's pretty clear now: Our world has special needs... complex needs.

And the more we deny it or pretend it doesn't involve us, the more trouble we will find.

The recent attacks in Paris have highlighted some incredible tension that exists globally with status, entitlement, and compassion (lack therof). And sadly, the attacks in Paris are only a small piece of the even larger wound caused by fear and hate.

I'm sad about the global pain, but, how do I reconcile...sort...process these events and the refugee crisis while sitting in Janneke's classroom or taking Rachel for her AFOs fitting?

It's not as if I want to ignore the global pain, but the issues of my day-to-day cloud?distract?my vision.

Yesterday, I stood in the lobby at McMaster Children's Hospital, watching the staff, families, patients, students, and others walk by.  Rachel and I were waiting to see her kidney doc. People-watching makes the wait pass quickly... and gives me time to think.  I was reminded of how many different ethnic communities are represented in just that space for that time in that corner of Hamilton.  Awesome Creator.

I still believe ultimate real power exists when all creatures flourish (A. Crouch). When we empower the vulnerable, good things happen.

Sometimes, we joke about being hangry... angry because you're hungry. It's that moment when you retort or snap - only to realize that after having a bit to eat, you are much more tolerant.

But what about if you're hungry for a couple of weeks?  I can't imagine the emotions that are stirred because that basic need isn't met. I can only guess you'd reach for any apple, no matter how radically disguised it might be.

I know this global pain requires collective ownership. Collective ownership births accountability, holding all of us responsible for making it right and good and helpful.

So, if we don't empower the vulnerable, someone else will. And with disastrous consequences.

I go back to that lobby and think about all the people I encounter in a given day. If we pay attention to who is around us in our little corner, that is a start. If we call our leaders to this collective ownership, that is a start.  And a good start is a good start.

This week, this poem popped in our newsfeed several times.... so I think it's only fitting to share from Naomi Shihab Nye's poems prose collection (2008) Honeybee .

Gate A-4

Wandering around the Albuquerque Airport Terminal, after learning
my flight had been delayed four hours, I heard an announcement:
"If anyone in the vicinity of Gate A-4 understands any Arabic, please
come to the gate immediately."

Well—one pauses these days. Gate A-4 was my own gate. I went there.

An older woman in full traditional Palestinian embroidered dress, just

like my grandma wore, was crumpled to the floor, wailing. "Help,"
said the flight agent. "Talk to her. What is her problem? We
told her the flight was going to be late and she did this."

I stooped to put my arm around the woman and spoke haltingly.
"Shu-dow-a, Shu-bid-uck Habibti? Stani schway, Min fadlick, Shu-bit-

The minute she heard any words she knew, however poorly

used, she stopped crying. She thought the flight had been cancelled
entirely. She needed to be in El Paso for major medical treatment the
next day. I said, "No, we're fine, you'll get there, just later, who is
picking you up? Let's call him."

We called her son, I spoke with him in English. I told him I would
stay with his mother till we got on the plane and ride next to 
her. She talked to him. Then we called her other sons just 
for the fun of it. Then we called my dad and he and she spoke for a while
in Arabic and found out of course they had ten shared friends. Then I 
thought just for the heck of it why not call some Palestinian poets I know
and let them chat with her? This all took up two hours.

She was laughing a lot by then. Telling of her life, patting my knee,
answering questions. She had pulled a sack of homemade mamool
cookies—little powdered sugar crumbly mounds stuffed with dates and
nuts—from her bag—and was offering them to all the women at the gate.

To my amazement, not a single woman declined one. It was like a
sacrament. The traveler from Argentina, the mom from California, the
lovely woman from Laredo—we were all covered with the same powdered
sugar. And smiling. There is no better cookie.

And then the airline broke out free apple juice from huge coolers and two
little girls from our flight ran around serving it and they
were covered with powdered sugar, too. And I noticed my new best friend—
by now we were holding hands—had a potted plant poking out of her bag,
some medicinal thing, with green furry leaves. Such an old country tradi-
tion. Always carry a plant. Always stay rooted to somewhere.

And I looked around that gate of late and weary ones and I thought, This

is the world I want to live in. The shared world. Not a single person in that
gate—once the crying of confusion stopped—seemed apprehensive about
any other person. They took the cookies. I wanted to hug all those other women, too.

This can still happen anywhere.

Not everything is lost.

Naomi Shihab Nye


Thursday, November 5, 2015

post-OACRS musings and a unicorn selfie

Proud mom here... my kids' artwork. Some used their hands and pencils; my kid use their feet, fingers and paint.

This past weekend, I had a chance to attend the annual OACRS conference in Toronto. It's a moment when I can savour instead of sorrow over the needs of my kids, when I connect with other parents who are plowing along the path - and a chance to network with clinicians and other professionals who are advocating for kids like ours across the province.

There's the Honorable Minister of Children and Youth Services Tracy MacCharles. An intimate meet-and-greet breakfast with a politician who calls herself a Mama Bear with reference to her own family life. That's not politic-ese, that's real.

There's Donna Thomson, an author and speaker and mom of a son who has special needs. Her attention to care of the caregiver via her blog is relevant for both families who live with special needs and those caring for aging parents.  I've read her book, The Four Walls of My Freedom, twice already...

There's Louise Kinross, blogger and advocate and mom who manages the amazing Bloom magazine. Her wisdom from professional and personal experience is appreciated; she's the kind of person I wish for more conversation time.

There's Sasha Emmons, editor-in-chief of Today's Parent, who spoke openly about working in the publishing industry while striving for a vision of inclusivity. I've referred to my friend Anchel in past posts with her column about her daughter in the online version of the mag. More recently, Today's Parent has featured kids with special needs as models in their issues in a casual way, not shouting out "look at us with a disabled kid on the front cover"... which appeals to me as a parent (see my last post).

And there's wonderful parent friends like Darren and Anna and many more who work hard in their part of the province to promote understanding and increase awareness. That's the really awesome part of getting together. We may not share much history, but there's a unique freedom in our conversations, an automatic understanding of "I get it" when it comes to talking about juggling complex needs, living grief and life.

This year, the opening keynote was the incredibly talented Sonia Lupien who spoke about stress... and reminded me that having a dog is a good thing for managing stress. I will try to remember that the next time Luna pulls surgical gloves out of the trash for a game.

Our closing keynote was Momentum Choir. Having them perform at OACRS was a personal dream of mine for a number of years. When you have clinicians, families and professionals all committed to better care and support of children with special needs, this amazing group of musicians is singing to the choir.  When they sang in the conference that Tuesday afternoon, it was sacred.

And all of this good stuff is now inside me, renewing my sense of gotta-keep-goingness. It is complicated to set up care for my family. We had to balance the care between nursing, respite, and PSW... a total of about 8 different people. Ralph really wanted to attend, so this year, he was able to slip up for the Monday afternoon. Yet, while we made plans for dinner on Gerrard St. on Monday night, Bernice (Ella's mom) was inserting a new g-tube in Janneke at our house.  Of course Janneke's g-tube would have issues while we were both away.  So thankful for community.

I guess if there's a take-away, it's this. It's good to get away.  It's good to be reminded to breathe. I am doing my family a disfavour if I think I am the only one who can take care of my kid - but that's so difficult to believe and to do.  Yet, I don't take it for granted that I can go away here and there. I know there are caregivers/parents that would like to, need to, step away but can't. This makes my heart ache.

We need people to stand with us in providing for our children who otherwise cannot advocate for themselves because of visible and invisible disabilities.  It is tiring to be more than just a mom - when you also have to be the nurse and advocate.We need our communities to voice their solidarity in working to create awareness, support and understanding. We need leaders in our government who will use their roles wisely to make things better.

Want to help? Connect with your local Children's Treatment Centre.  Ask what you can do. Join a local charity group that strives to empower families and persons who need advocacy and support.

In one of the sessions, a mom asked a presenter about advocating for services for her child while living in a remote part of Ontario. The presenter, wonderful and educated, suggested the mom write her local health network to ask for more services. Not exactly helpful. So, this overworked mom is now going to find time to cleverly articulate to someone she doesn't know that her family needs help? Unless she is supported by others or has incredible resiliency, this won't happen. And from what I understand, it isn't happening in many Aboriginal communities.

Recently, there's been changes on the federal level with new cabinet members chosen. I can hope these folks have been chosen based on their merit and skillset... and I am excited to see how Carla Qualtrough manages her new role as Minister of Sport and Persons with a Disability.

I doubt Rachel or Janneke has given much thought as to who's king of the local, provincial or federal jungle. They simply smile and wait for someone to come to them to feed them, change them, and take them places. This incredible dependency is both intimidating and motivating.

And with that, I gotta keep going.