Friday, December 25, 2015

post Christmas reflection

We took the family to church this morning for the Christmas Day service.  Attending church with Rachel and Janneke requires more work and muster than we have some weeks, but we rallied for today. It's one of the few places we take them other than school and the local Kiwanis pool that is accessible and do-able.

Yet, by the time the praise team had belted out their second line of O Come Let Us Adore Him, Janneke had enough. I glanced over at her screaming red face and took her to the back of the church where the portable partitions somewhat muted the songs of joy. She immediately settled and resumed her rocking and stimming while sittting on my lap.

I sat there with my 6 year old daughter on my lap, watching my church family worship and fellowship. Sitting at the back means I feel as if one foot is in the group and one foot is out. It means you have to concentrate a little more to listen and participate while also being privy to the number of people that slip out to pee and take babies to the nursery.

And so I sat with Janneke... trying to concentrate on Christmas.

I noticed the song What Child is This? was on the list for the morning's service. These Christmas songs sung repeatedly over the years carry many memories. We used to crowd into my grandparents' living room with my aunts, uncles and cousins and sing on Christmas Day. We took turns hollering out what song we should sing - traditional Christmas hymns with The 12 Days of Christmas - and of course, ending with Ere Zij God (traditional Dutch).

As a kid, I really liked the songs in minor key. What Child is This? was a favourite - and not just because it was one of the few times we could merrily sing out the word ass in church without getting a stern look. There was something about the melancholy tune and the words that brought some authenticity to the otherwise serene manger scene.

Today, as we sang the song, I couldn't help but wonder the same about the kid on my lap - albeit not sleeping. What child is this, Lord?... this six year old on my lap who is rocking and stimming?

There's a lot of holy adoration thrust at Mary at this time of year. Virgin birth, mother of the King. She was told that she'd be mother of the Son of God. So... when she was riding the donkey, feeling larger than a horse, and realized she'd be birthing this baby with Joseph and animals assisting, did she maybe question God on the whole plan? I've read the Psalms, and those poems are full of questions.

While trying to concentrate on Christmas with my six year old on my lap, I reflected that once again, my expectations have to take a back seat to the Big Picture. That's hard. I wish things could fall into place neatly, sorted, and alphabetized.

But.

What I find fascinating and frustrating is that the Bible simply says, "and Mary pondered all these things and treasured them in her heart." Where is the passage that illustrates her disappointment? Did she ever want to storm at God for His mysterious ways?

This year has taken a toll on our mental health. When I read some of my words from a few years ago, the words about trusting God because He's got the future in His hands, I wonder if I am now jaded... it's not that I don't trust that God's got this. It's just that the more my children age and push the limits, the more I have to let go of more expectations or plans, the less I like trusting.

In my experience, when life brings you to the point where you are faced with your own vulnerability and fragility - not to mention the fragility of your child, you question -and with intensity- the source of your strength, in whatever you have rooted a belief.

Trusting is messy.

I'm guessing it was a messy virgin birth. I'm guessing it wasn't a serene as the Christmas cards depict. And I am guessing it wasn't at all what Mary expected.

But, the birth of that baby, of Christ, in all the smell and dirt means that I have the freedom to lament the loss of dreams, the change of plans all the while knowing that God's got this. The forever piling up of doubt and angst are still no match for the mustard-seed-sized faith.


Soon after the song finished, Soph came to the back to keep us company. She took Janneke onto her lap. Sitting back to watch them, I thought of the famous paintings of Madonna and Child - but instead this was Sophia and sister.



My child is this: a little sister who was unexpected yet planned. This one whose name means God's Grace. A spacious grace that is generous and unexpected.

Commence pondering and treasuring.

peace,
spot

Thursday, December 24, 2015

Christmas 2015


We tried a family photo today. It was a bit of a gong show, but we all showed up.  

Happy New Year.  Bring on 2016.

Another year with more memories to make.

We're going to pass the pen to one of our current favourite authors, Brene Brown. She's pretty much articulated what we'd like to say: 

This has become my annual holiday post. 
I share it because I need the reminder that we are not alone in the mess.
Every year as I think about my own life and reflect upon what my family and what many of the people around me are going through this Christmas, 
it’s clear that struggle doesn’t take off for the holidays.
The gremlins don’t go on vacation. Checks bounce, chemotherapy appointments are scheduled, interventions are planned, relationships keep unravelling, being alone feels even lonelier, parents negotiate who will have the kids on Christmas morning, and the “never enoughs” are in full swing.
As I prepare to spend the next few days with my family and friends I come back to this: I will find my holiday magic in the mess. I will practice love and gratitude with the special group of folks who keep showing up and loving me, not despite my vulnerabilities, but because of them.

Merry Christmas.

Emmanuel. God showed up. And He walks with us.

peace,
spot and rpot



Thursday, December 10, 2015

empathic intelligence

In Rachel's Grade 4 classroom, her fellow students practice their emerging writing skills by taking turns each week writing "in Rachel's voice"... an activity that asks the student to imagine what Rachel is thinking each day of that week.


Some of the authors have loads to say, and others are short and to the point. Some include descriptive phrases, and others write plainly about what was heard and seen in the week.  Many of them include a common thought that goes something like this: "People don't know that I know WAY MORE than they think about me."



Her classmates are glimpsing perspective, the power of assumption, and empathetic intelligence.  I am glimpsing my nonverbal disabled kid for who she is and could be - within and beyond those limitations.

I love this assignment.

I love her classmates.

Glimpsing someone else's view, stepping into their world, seeing it from their eyes...

Given the recent events as trumpeted in the media outlets, I think the world needs this assignment.

peace,
spot

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.

(Ralph)

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..



(Joanne)

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 “nah...you 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

sorting


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-
se-wee?" 

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


peace,
spot


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.

peace,
spot

Friday, October 23, 2015

inspiration vs. normal

So I am excited about something that others have been sharing this week. Though People magazine is probably my least favourite read, one of their articles went viral this week.  Here's the article via NPR for your perusal.

No, the People article is not about some other movie star or TV has-been. It's about a TV show that has been a favourite here... and I suspect in many of your homes for more than one generation.  Sesame Street has introduced a new character with Autism.  And with that introduction, they have also created resources to help parents and others.


No one person or organization is perfect, but I love that Sesame Street is trying. And they've been working at inclusion long before it became a sexy word. Back in the late 70s/early 80s, one of their writers, Emily Perl Kingsley (also happens to be the author of the poem Welcome to Holland), wrote her son Jason into the scenes as a regular guest. Her son also happened to have Down Syndrome.

Also trending this week - do I sound official? - is an article connected with Changing the Face of Beauty, an organization intent on promoting equal representation of people with disabilities in advertising and media worldwide.  Recently, Target (one of the companies willing to embrace this vision) featured a young model wearing an Elsa costume. The model just happened to also have braces and arm crutches.  However you feel about Target or Halloween, the visual presentation is pretty cool.  And one mom's response to the ad is worth reading.


Each day, we can be bombarded with images that challenge or motivate or guilt us into how we should live, act and perceive. Facebook and other social media can easily be used to distort truth or help us create a facade of reality.

So this idea of Sesame Street and Target working at authentic inclusion is encouraging to a family like mine, a family that wouldn't be considered normal by some.

Because it would seem that exclusion is a learned behaviour - and not just from magazines and the media.  More than once, I have experienced the well-meaning parent shushing their child and pulling them away from my kids - when all the child wanted to do was look at Rachel and Janneke and understand. Recently, this happened at IKEA with Rachel, and I felt discouraged and irritated. I wanted to approach the families and introduce my kid to their kid.

What I mean is that I'm not looking for my kids to be your inspiration, i.e. you need to make friends with my kid because she's disabled... I simply want to expand that definition of normal. As someone once said, normal is just a setting on the dryer.

a normal way to sleep - for Janneke

Because sometimes, I get uncomfortable with the excitement of inclusion being mainstream.  And I know that for a few families, everyday inclusion is sometimes too overwhelming.  When we talked about bringing Rachel into her community school, many said how great the experience would be for other children.  I agreed. But we also wanted to be confident the experience of inclusion would be great for Rachel. I have no desire to put my kid in the foreground of the photo to show you how cool Beacon is because they have a kid in a wheelchair.

Instead, I desire to see the kids in her school and the kids in her life simply accept and know that all kids are cool, created to be amazing in their own way and in the way of their Creator God. I believe He has purpose in disability - not to inspire but to challenge all of us to make the world better.

This is not meant to blow off or ignore the caregiver struggling to help their child or the person who is living with a painful disability.  The young Elsa from the Target ad with braces and arm crutches doesn't show us the harder parts of living with limits. If I don't believe there's purpose in the disability, somewhere, somehow, then there isn't anything left to hang on to.  That belief in purpose might only be one small thread at times... but it is there.

And hopefully, the more the stories are shared, 'grammed, tweeted, fbooked, blogged, told, chatted, the more our definition of normal changes, and our response to these struggles and to the needs will increase. That those listening and watching, from large companies and their advertisers to the people shopping at IKEA to the guy sitting next to you and yours in a restaurant, will not be so much inspired as motivated to help.

captured these three among many who were gathered around Rachel at recess earlier this week

peace,
spot



Sunday, October 18, 2015

position and posture

Hey again.


Grandpa popped by and showed the girls what a slide projector is. As soon as the fan turned on, the sound brought me back to high school geography class with Mr. Meester and his slides of limestone on the Niagara escarpment. Yep, this was the original slide show, kids.

October is birthday month here. Sophia and Ralph had their birthdays this past week, and Emily has hers coming this week.  In between and around are the birthdays of almost half our extended family. That's a lot of cake and ice cream. Or mini tarts.


It's also election month - tomorrow Canada gets to vote in a federal election. We. get. to. vote. Wow. Want to catch a glimpse of not having that freedom? Watch Selma for starters.  Or learn about the 1960 decision here in Canada made by Diefenbaker.  

I am amazed at how much is written, said, and shared about this Canadian election. And the advice about who I should vote for, and who I shouldn't vote for abounds.  People talk about the phrase "Canadian nice" - well, the recent voting ads are anything but.  

.......

This- all at the same time I am working with the seating clinic at the children's centre to tune up and repair the girls' wheelchairs. While measuring and examining the chairs, we talk a lot about position and posture.

Which leads me to think about the election.

I guess I hope whatever position you take tomorrow, whatever vote you make, that your posture on Tuesday and beyond is one that surpasses party lines. A posture that is bent on caring and showing compassion for the vulnerable, hurt, lost and less able.  A posture that emphasizes community and harmony -that we agree to disagree.

Because we will probably always disagree about something. Agreeing to disagree means we stop shaming and pointing fingers about the choices people make, and instead, we find common ground to foster a stronger community. And we don't stop advocating for a better life for each other.

Rachel enjoying some tactile therapy time


peace.
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Monday, October 12, 2015

Happy trying-to-live-thankful-and-be-giving

Hey, Happy Canadian Thanksgiving.

Hi. It's been 71 days since we popped up a post. Have you missed reading this? (Maybe don't answer that. Laugh a little.)  Over the last 71 days, it's been busy finding harmony with family and work and life. There have been moments when I thought about blogging, but my heart wasn't committed.

I've wondered why we blog. It started as updates when Janneke was born, that time so long ago when we were knee-deep in sorrow, numb as we digested embracing another daughter with complex needs. That was over 6 years ago.

It's challenging to accurately encapsulate the myriad of emotions and thoughts that run through this house and this marriage as we take on each day.   As it is in many homes.  We are keenly aware of how persistent the temptation exists to stay frustrated with what isn't... what isn't the way we want it to be. Mental, emotional, and spiritual health are important to us, but they often suffer when we are trying to cope.

Maybe more can be typed about that in another post.

That being said, there are some good things happening this fall.

Rachel started at Beacon in September. And it's working. So well.




"psst... Kalan, did you do your homework last night?"


these students inspired the student body to raise money for a swing at school for Rachel



My favourite part about Rachel's experience so far? The response of the kids in school. Choruses of "Hi, Rachel" can be heard as she enters and exits the building. Kids have assigned themselves roles - protector on the playground, so the balls don't hit her chair, heavy-lifter in the hallway, carrying the beanbag chair to chapel and assemblies, and the countless check-ins of "Have you hooked her feed up properly?" "I think she needs to stretch her legs" and "How are you feeling today, Rachel?".

Em started high school. She loves it.  She sorta loves the bus ride. No more waking up last minute and walking over to class.

with Aunt Grace visiting from Minnesota


Janneke is still at the Children's Centre School, but she hasn't been well enough to attend many days. I think she has attended 10 since the start of the year. From one infection to another cold, she hasn't been super healthy. She is also sensitive to sounds; our little hermit would prefer a class of 1 kid.



Soph is in another year of school, but I suspect she'd rather be paddleboarding. She'll manage.



Ralph and I are sifting and sorting through the days. Some days are well done, and other days feel half baked.

But we are conscious of the growth that comes with each season and stage in living and parenting. We know these days shouldn't be wasted, won't be wasted.

We hope this week has good things for you and yours.


peace,
spot

we do find Instagram easier for posting... you are welcome to follow our story there too.

Sunday, August 2, 2015

goodbye, July...


I'm calling this pic "creative power," the determination to succeed and thrive -mindful of the risk of loss but persistent in the possibility of living (thank you, A. Crouch).

I caught this photo on one of our hikes in Algonquin last week. Yes, we camped again. Either we are gluttons for punishment, or we are persistent in glimpsing the glory and beauty of the great outdoors. I'd like to think we are beauty-seekers...

We arrived in a rainstorm and shortly after the rain - and after rearranging the large pine trees around our trailer, Janneke's blood sugar plummeted. Not sure what triggered the drop, but we anxiously waited for the orange juice (the only liquid sugar on hand) to do its job. Thankfully, her colour changed to normal, and she fell into a deep and restful sleep. This short but dramatic start made us question our intentions in leaving the city. Yet, how much do we let the "what ifs" take residence?

Those "what ifs" soon left like the rain, and we had a good week. One of many good memories included giving both Rachel and Janneke a chance to sit in the canoe. We had not done this before, but the shallow Madawaska River was a good place for their first voyage. How could I be so confident? I grew up paddling the same stream....see photo circa 1986.  Same spot, same SPot.


* * * * * * * * 
This was the view from our campsite. It was a treat to watch the kids canoe around, reminiscing the days of when I would canoe with my brother and sisters. It was great to watch Em and Soph take it all in - but tough to know that Rachel and Janneke couldn't just pop down and give it a go. That's all part of dealing with living grief, acknowledging the gap between peers who can and my kids who can't.


But my kids - all four of them - could soak up the beauty of the lake. A special thanks is extended to Christina Teeuwsen for willingly coming along to keep us sorted and upright.


Janneke, sporting her new summer shades, loved loved loved the water.



With Christina's help, we could grab some Family of Four time to search for moose and bear- but see only beavers and herons and sunsets. And tolerate some preteen goofy singing... which might be the reason we didn't see a moose or bear.



We caught some spa treatment at a waterfall on the last day.


* * * * * * * * * *

And of course, no trip to Algonquin would be complete without the token pine-tree-island pic. We took turns swimming from the beach to the island - and hitching a ride home on the canoe. Same canoe in the 1986 pic.



* * * * * * * *

Our last few days? We celebrated at the wedding for Jared and EmilyRose Pot, and Emily had a chance to play the piano for their wedding ceremony. Most recently, we enjoyed a visit with Kerry Shaffer, daughter to our loved Miss Ruth Maher -first and only nurse back in the baby days of Rachel and Janneke. Ruth passed away a few years ago, but we remember her fondly.  We have stayed in touch with her daughters, Kerry and Megan. Kerry won two gold medals in rowing at the PanAm games this July, and she stopped in to show off the medals - and present PACHI (stuffie) to the girls. It was a good visit, and it was great for Soph and Em to hear of Kerry's determination to see God's plan in the ups and downs of her life.


The camping trips were our bookends for July; we started and finished the month in Algonquin. It was a full month with family visits, fun with friends, summer camp, and hospital appointments. Now begins August...

may there be peace in your summer story,
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Thursday, July 2, 2015

transitions, trailers and Lake of Two Rivers


Transition time.  I suppose with every transition, we have to find our own way of balancing the tears over leaving behind what is familiar with the excitement of anticipating the future. Em graduated from Grade 8 - and I feel like I was the one who suddenly grew up. Here is our first born, hugging her principal. And me? I'm the one who is at a loss for words because it's hit me that my kid is slowly stepping out of her velcro shoes and reaching for heels and glittery eye stuff. And not because she wants to play dress up.



We were proud parents that night, particularly when Emily sat at the piano to play and sing a song she made up chord progressions for - by simply listening to the song.  She's not one to jump into a crowd of kids and start the fun; she'd rather play it safe by watching. But that night, she stepped out and shone. 

I love this pic of Rachel congratulating Emily. Em's classmates, in all their finery, are giving Rachel sweet smiles - and I will remember this class for their genuine love of Em's sisters....starting all the way back in SK in the fall of 2006.


* * * * * * * * * * * * 

Emily isn't the only one going through transition - Rachel had her send-off ceremony at the Children's Centre School last week. After being a part of the the Niagara Children's Centre since 2006, Rachel leaves for her community school, Beacon Christian. And that last day was a teary one. We are all thrilled she is ready to join her peers at Beacon, but we know we will also miss the family at NCC School. 


Janneke will be back at the Children's Centre School. We know the staff will enjoy her spunk, and we look forward to the idea of achieving more milestones. Yes, our gloved one - otherwise known as Janneke- isn't keen to look at the camera, and lately, she has to wear a mitten on one hand to thwart her from rubbing her eye. 


We also shared some love and good byes with our busdrivers. These two are so good with our girls, loving and caring for them the minute they pull into the driveway. We gave them a gift from Rachel that we gave the rest of Rachel's team - a hand-made piece that says "choose joy." This has been our mantra since the birth of Rachel, and it seemed fitting to say good-bye to Rachel's team with this reminder. A special thanks to my neighbour Stephanie of The Primitive Shed for creating these.



* * * * * * * * * * * *

And why not hurry from school and post-surgery to Algonquin? Isn't that what the doc ordered? So, that's what we did. Along with a number of other families that share college history with Ralph at Redeemer U College, we hiked, campfired (that's one of those summer verbs), chased a baby moose and savoured the ambience of Algonquin.



Camping isn't the easiest of holidays with wheelchairs and whatnots, but we were thankful to have Katelyn come along again to help. We are still seeking harmony with the needs and wants of our kids while camping - and learning through our mistakes what works and what doesn't.  But, there are great memories that crowd out the frustration and lack of sleep. 




It was great to see the response of the kids with Rachel and Janneke, particularly with Jeremy who is just a few months younger than Rachel. Often, when I see kids Rachel's age, I am reminded of what Rachel can't do... a bit like salt in the wound. Yet, Jeremy was often over at our site, asking to see Rachel and wanting to touch her hand and talk to her. It was in those moments when this kid's compassion and huge heart superceded my tendency to be bitter or sad. And I caught a glimpse of God's grace and love in that bundle of energy who was otherwise hollering at the "big" kids to include him in the volleyball court.


now back to the laundry...
peace,
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