The Boy in the Moon. And other thoughts.

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I hear parents of other handicapped kids saying all the time, 'I wouldn't change my child,' " Johanna said one night. We were lying in bed, talking as we fell asleep. "They say, 'I wouldn't trade him for anything.' But I would. I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school. I would trade him in an instant. I wouldn't trade him for my sake, for our sake. But I would trade for his sake. I think Walker has a very, very hard life.

This, from the book The Boy in the Moon by Ian Brown, Canadian author and journalist (Globe and Mail). Brown's book is about his perspective on loving and caring for his son Walker, born with cardio-facio-cutaneous syndrome.

Need a summer read? Read that book.

This past Saturday, Ralph and I attended the play based on the book, performed at the Crow's Theatre. Including the irritating pre-performance of us sitting in traffic and the dramatic post-performance of us fighting about this-and-that, the outing was a real-to-life experience. At times, it felt as if the actors portraying Ian Brown's family were actually in our livingroom, replaying parts of our story. Held on a stage with minimal props and beautifully orchestrated light and sound, the play included excerpts from the book, and, at appropriate moments, photos of Walker were transposed on the back wall.

There's so much in Brown's writings that resonates with my own experience. It was the first book I read about loving and caring for a child with special needs that felt real. It was freeing to know there was another parent who struggles to find meaning and hope - and swears in the middle of the night when they are wrestling with an active kid and a feeding tube. In particular, I loved reading about his conversations with Jean Vanier. 

The more we meet the handicapped on their own ground, rather than our own, Mr. Vanier says, the more we evolve. We begin in fear of their appearance and behaviour; move on through pity; pass through the stage where we help them and respect them, but still see them as lesser beings; until finally we experience "wonderment and thanksgiving," and "discover that, by becoming close to disabled people and entering an authentic relationship with them, they transform us. They help us to move from the personal desire for success and power to a desire to be with those who are weak and help them to be just as they are, knowing that we receive as much or even more than we give."

The most beautiful sound during the play? The sniffling soft sobs of the audience. 

When I heard the runny noses being blown and glanced around to see tears being wiped off the faces, I wanted to sing out something like Hallelujah. As crazy as that might seem, my hard heart was cheered. 

There are so many stories still waiting to be told. When their power is harnessed, my hope is that we see a movement of radical compassion - not based on pity or on tears of sympathy, not based on what is familiar or comfortable, but on a desire to see and know a stronger diverse community with all parts flourishing.

peace. spot

(quotes taken from The Boy in the Moon)

Need another story - with pictures? Peek at this trailer: 

whaddyathinking?

This week, I met with Janneke's SLP (speech/language pathologist). Janneke is nonverbal, meaning she doesn't use spoken word (or sign), but as we watch her grow and develop, we catch glimpses of how she is interacting with her world. At school, they are offering her choices with picture cards; as she studies the pictures, they observe her eye gaze to determine her preference. The hope is that her eyes will rest longer on the card she prefers. This method isn't always successful, but it's one idea we are trying. 

Our consultation time revolved around the idea of building Janneke's receptive vocabulary. Receptive vocabulary refers to the words that Janneke can internalize and understand. This is not to be confused with her expressive vocabulary - which is difficult to determine since she is nonverbal and not signing. Expressive vocabulary refers to the output, the word spoken or communicated. These words might not actually be understood by the speaker, but they are the ones that can be expressed.

It's possible that one might express a word without fully comprehending its meaning. 


Sometimes I use big words I don’t always fully understand
in an effort to make myself sound more photosynthesis.
— the Internet (which is a very expressive space and difficult to cite) @itsWillyFerrell

I remember as a child reading big words from the dictionary in my dad's office and then trying them out on my aunts and uncles at Oma's house. Judging from the laughter in my memory, I'm pretty sure I didn't get the word right. 

It's not as funny when grown ups use words without understanding their meaning or the implications of expressing. S. Covey writes, "Most people do not listen with the intent to understand; they listen with the intent to reply." 

Though there are a few moments when I'm pretty sure Rachel would offer a sassy comeback if she could, there are more moments when I can only guess at what both girls are taking in as everyone talks, shouts, and laughs around them. What are they hearing? 

When I watch Janneke and Rachel quietly take in their world each day, I wonder how big their receptive vocabulary is.  There's nothing to suggest that it's as limited as their physical capabilities.  So we talk with Rachel and Janneke - and tell others the same - as if they could respond, hoping to build their receptive intelligence. And then we (try to) patiently wait for their expressive response. 

Always learning.

peace, spot


Back to this blog idea.

The look and location has changed; instead of finding us @thepotfamilyblogspot, we are now @ sara-pot.squarespace.com. This change has come for several reasons, one being that Blogger was getting more frustrating to use, and the other that I am cautiously but deliberating seeking ways to share our story. 

It's intimidating changing our location from the family name to my own name. It seems a bit, well, self-absorbed.  

Yet, given my work with writing and speaking, we needed a spot (ha!) to send inquiries. 

So, this is the new look. 

Happy Birthday, Rachel... and back to the blog.

It’s been awhile. Blogging took a back seat since last August. Last summer was tough. With both girls developing sepsis suddenly (Janneke in July and Rachel in August), we needed a break from a few things.

That doesn’t mean I wasn’t writing. 

For whatever reason, I found blogging to be extra challenging after the summer. Maybe it’s because I sometimes wonder if blogging is too personal. Or blogging becomes self-promoting - “whoohoo, look at our family.”

Yet.

I am aware of the power of story.

Flannery O’Connor is associated with the quote: A story is a way to say something that can’t be said any other way.

I guess that is part of the why we keep writing -and now blogging- again.

Eleven years ago today, we welcomed Rachel Joy into our family. Eleven years, we took our first steps in this journey of new normals, feeding tubes and wheelchairs. It’s been eleven years of searching for a rhythm we can call familiar.

In preparing for my recent address on resilience, one article came to my attention - and I haven’t forgotten it. Published in the Journal of Family Studies, Welcome to Holland: characteristics of resilient families raising children with severe disabilities (Knestrict and Kuchey 2009) looked at 17 different families.

In addition to finding a positive relationship between healthy socioeconomic status and resilience, “The study also found that having the time and the ability to reflect was a key to reconfiguration, which is seen as crucial in the development of resilience” (Knestrict & Kuchey).

This part stood out as soon as I read it: having time and the ability to reflect.

These are often elusive gifts to many families who are living with disability. I am thankful for the nursing support and respite we have; I truly see them as gifts that allow me to exhale. 

Perhaps that was what the gap from August to now with blogging was - time for reflecting. Let’s call it that.

The authors go on to describe that resilient families were ones who created a routine, albeit unique and foreign to others, and from this routine came a rhythm, a framework that the whole family leaned on.

I love the expression of rhythm. When I taught poetry, we explained rhythm as a literary device that includes long and short patterns through stressed and unstressed syllables. It is a measured motion that creates identifiable patterns.

I’m going to draw a parallel here: This rhythm in our life is a process of trying to include all the ups and downs, all the loose ends and sorted pieces, and create something familiar. And we do feel as if we are constantly in motion. The hope is that our motion is mostly measured - and less chaotic.

Does this make us resilient? That seems somewhat presumptuous. I feel as if resilience is a describing word for the epilogue of a book: And they were a resilient family that withstood adversity and hardship. The end.

We’re not at the end of our story.  In the meantime, we are forever seeking ways to thrive - not just survive - but that takes tremendous energy, time, and confidence (financial, emotional, spiritual) to move forward.

Recently, I heard a song that has stayed with me. It’s by Moe Clark, and I am drawn to the line I find grace in the simple things. In searching for routine-that-turns-into-rhythm, I have to remind myself to look for the simple things, to be content with the small steps.

And in those small steps, I want show the importance of doing this life together. I want to help other families find rhythm too. 

We are thankful for Rachel’s eleven years. We are thankful for the joy she brings. We are thankful for her smile, for her awkward-but-perfect elbow hug, and for her foot rubbing. She exudes a profound love that we can’t quite articulate in a word, so we continue to tell the story.

It’s not all roses here, and I don’t want to tie this up with a pretty bow; it is a story that ain’t over.  

peace,  

spot


(So, it does sort of look like things have changed with this website - a sort of “whoohoo, look at me.” I’d love your feedback.)

Camping, Take 2



* * * * * * * * * * * * * 

Urosepsis, u r a pain.

Just before we left for our second camping trip, Rachel became very ill. Turns out, she had a similar infection (urosepsis) to what Janneke had when we tried camping the first time. Thankfully, we caught the infection quickly; we didn't need a helicopter, and Rachel started to feel better after three days of IV antibiotics.  When we learned that we could switch to oral antibiotics, we wondered if we should still plan on camping. Were we being stubborn, creative - or careless? Regardless, we knew that we didn't have nursing hours for the days we planned to be away. We had Katelyn scheduled for respite at the campsite, and we decided that we'd rather deal with medications and side effects of medications along the Ausable River than our house.


We left later than originally planned, but we still camped.  The turquoise waters of Lake Huron were good therapy for us as we tried to catch our breath from the few anxious days that preceded the beach.


We camped with several families.  Part of the fun included a 19 team double elimination Bocci tournament.  It was intense, with measuring tapes and judges.  Emily and Justin came close... but not close enough; they took the silver. 





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

Each summer, we wonder if this will be the last time we try camping. We keep trying... We know that it doesn't work well to go alone. We are so grateful for the meals made, the muscles to carry the wheelchairs across the sand, and the cheerleaders who make anything and everything work.



The kids, minus a few - but making the most of the memories with each other.



So, it did work. Now we are at home, slowly generating the energy needed to start the school routine. We also have additional appointments at Mac that will help us sort through the girls' new medical issues.  

After the first night of camping this second time, I told Ralph I was tired of pretending that camping could work. I wanted to pack it up and leave. But I made a coffee instead. And there wasn't anything extra amazing that happened, yet as I moved through the day, I no longer wanted to leave. Sometimes the lowest of the low moments needs to wash over and then wash away. If I truly acted on that, I'd have more regrets than reasons to be thankful. 

So, we give thanks for the canoe rides along the river, too many bocci games, the laughter shared over old memories and new stories, and the reminder to keep on keeping on. 

It's been ten years... ten summers of trying to find new ways to make good memories. I wrote about our ten years in the form of ten lessons learned recently here and here.  And we keep learning.

peace for your week,
spot


Postscript:
What else matters on a rainy day while camping if you have a friend who wants to read to you? 


on camping

Yep, we're still here. Trying to remain vertical when the day-to-day sometimes knocks us down. It's the middle of the summer, and we just finished a week of camping.


Well, sort of.

In this chapter of our family's story, the end reads of Janneke home, laughing in her bed. It also includes a cheery Rachel, probably the happiest she's been with camping in the last few years.

The middle of the chapter is about Janneke taking a Ornge helicopter from Parry Sound to Hamilton late at night.

The beginning of the chapter?  Last week, we arrived at our campsite, excited to try Killbear Provincial Park, located along the inlets of Georgian Bay's shoreline. We loved having a campsite on the beach that allowed Rachel and Janneke (and Luna) to sit at the site and watch their sisters on the sunny beach. The rocky shore was actually semi-accessible in spots, allowing the girls to get right up to the water!




Unfortunately, Janneke started with high fevers the second day into our trip.  We became more uneasy and took her to the nearby Parry Sound hospital Wednesday morning. Over the course of the day, her infection became serious enough that after several rounds of IV antibiotics, we were transported by air to McMaster in Hamilton. Under different circumstances, it would have been thrilling to take a helicopter ride, but at 4 AM, it's dark out - and I was pretty worried about our kid.

Janneke and I arrived at Mac where the ER staff greeted her by first name at the door. The familiarity was comforting given the anxiety and lack of sleep. We were admitted and continued with IV antibiotics under the care of our paediatrician, and after three days at Mac, we were sent home with more meds.  



In the meantime, Ralph and the girls - along with Katelyn, stayed at Killbear until Friday. Ironically, it's usually Rachel who has medical issues or shows displeasure with being away from home. This time around, she woke up every day smiling, and she loved watching the water *insert big smiley face*.



When I look at that week, I want to see the good outweigh the disappointment. I want to celebrate the fact that Rachel had a great week, that we all got a taste of camping in parts. 

I can't ignore the disappointment over how things didn't go as planned. I can't forget the tears of frustration I had in the Parry Sound ER when I knew our little kiddo was super sick - and once again, we'd be telling our kids that plans were changing.

It's hard not to be bitter when plans come undone. Sometimes I get tired of trying to see the purpose in the plight.

Yet, walking the halls in the paediatric ward at Mac reminded me of the many stories also out there... plans that unraveled, reservations on hold, and canceled pool parties for other families.

For our family, the chapter ends with all of us home again. And we are thankful. We have more meds to give and more appointments to attend, but tonight, we are all home under the same roof. We have some pictures that will preserve the memories, and we will go camping again.

peace,
spot




speechless and accessible

This week I spent some time writing about the need for accessible toilet facilities in public spaces, washrooms that accommodate Rachel and Janneke. As the girls grow in size, there are not a lot of places we can take them because there are so few truly accessible washrooms.  I didn’t know there were so few until we started needing them.  

I am sure most parents can relate to the elusive bathroom experience, regardless of ability. The infamous 300 km road trip scenario: kids in carseats wedged between the suitcases, travel games and sand pails… only to have to stop after 10km due to hollers of “I have to go NOW!”  And there are the pee dance moves, prompted by a “yucky-looking” powder room at the grocery store that has the child shimmying in her seat all the way home, grocery cart abandoned in aisle 4.

Having two children who are completely dependent on others and their wheelchairs for mobility brings a whole new perspective to finding a WC.



Most public facilities have one larger standard stall with two grip bars. That cramped space doesn’t come close to meeting the needs of a caregiver who might require assistance to take their child out of a wheelchair and must have a sturdy bench on which to change the linens.  The lack of such loos is a shitty barrier (pun intended) for many parents who wish to provide some semblance of normalcy for their families and bring their children out of the home. There are more than a few who have taken to changing nappies on the bathroom floor.

For our family, we try to call ahead to learn what to expect for bathroom access, and in the warmer months, we use our van to provide a private place for changing. It is not ideal, and we are trying to find successful ways to advocate for real accessibility here in Ontario. (See here for the Picture our Barriers campaign from the AODA Alliance.)

Sadly, though truly accessible washrooms could provide those who sit on the periphery of normal a safe place to pee or receive a clean linen, it seems to be a contentious issue.  There’s quite a cacophony on social media and in the news about one’s use of the chalet de necessite, suggesting some have constipated emotions that distract from helping others.

A couple of days ago, I was sent the trailer for the new TV series from ABC called Speechless. Here’s the wikipedia description: “The series follows the DiMeo family, and their own unique personality: a take charge mother with a outlandish but no-holds barred attitude, a husband who seems to be smarter than he thinks, a no-nonsense athletic daughter, a middle child who's the "brains" in the family, and their teenage son with special needs. The DiMeos are about to bring all that from a middle class neighborhood they despised because of the location itself to a more upscale town in an effort to improve their way of life, with imperfect results.”

I’ve been thinking about that trailer.  And yes, I’ve still been thinking about bathrooms.

I love the fact that one of the main characters of Speechless is a nonverbal teenager with heaps of wit and wisdom. I appreciate the fact that another main character is a parent who advocates day and night for her kid - albeit often like a bull in a china shop. I wanted to cry when I watched the verbal middle child point out that his needs are often overlooked in favour of finding the right program for his brother.

Speechless uses humour to cross lines of race, gender, status, and opinion - and allow everyone to share a joke….sometimes without saying a word. Speechless is about laughing at our scars and creating awareness about the wounds that still exist.

Humour truly is powerful…. Powerfully suggestive in a way that rants and rages aren’t.  

I’m looking forward to watching TV. I’ll take my pee breaks during commercials, of course.

peace,
spot


in her shoes.... or wheels


Today, Rachel's class had a field trip to a water festival, a day geared for education about water as a resource. The day involved traveling outside from tent to tent, learning about water, the outdoors, and taking care of our planet. The kids seemed quite interested in the sessions, particularly the one on beach safety because they could talk openly about poop... e-coli.

Certainly, it was a day to learn about water, but it also brought a surprising lesson to Rachel's class. As classmate Thomas pointed out, there were no other kids in wheelchairs at the festival - there were at least 30 different schools present -and kids were staring at Rachel out of curiosity.

I had noticed at the start of the trip that Rachel was distressed. This was not a normal school day for her, and because she had traveled on an accessible bus, we were waiting for the rest of the class to arrive on their bus.  Without her teacher and classmates surrounding her, she seemed confused as to what was happening. I assured her that the class was coming, and when they arrived, they greeted her with cheer.

I asked the class to take turns coming alongside her, to remind her that we were all here together. The class didn't really need that reminder; instead, there were minor squabbles about having to share Rachel.

When Thomas mentioned that kids were staring, I realized, for this group of kids, Rachel and her chair and her feed pump are already normal. In seeing the stares of other kids, Rachel's classmates caught a glimpse of what Rachel experiences always.... and so today's water education experience also included a lesson in empathy.



* * * * * * * * * * *

In other news, Janneke recently had a piece in the annual Niagara Children's Centre School Art Exhibit. Here is the artiste with her piece.... pointing out her favourite:


And yes, that's a mitten on her hand. She still stims her eye with her left hand, so the mitten deters the rubbing some of the time. Perhaps the one glove adds to the allure of her work as an artiste moderne?

peace,
spot

Double digits

Happy Birthday, Rachel!


Today we celebrate 10 years of Rachel's life, knowing we are not alone in savouring her smile and sharing the struggles that come with her needs.  Today is a sweet day for our Rachel as she celebrates ten years of life. Ten years of smiling, laughing, and tolerating the tough stuff. We love you, Ray-Ray... our little sunshine. 

a piece by Rachel, done with her hand on a helper's hand - and she grips tightly!

* * *

Here are two videos that paint a bit of a picture of the journey we have been on since 2006. The first was made shortly after Rachel's birth ten years ago. The second was made last fall, a couple months after Rachel began at Beacon Christian School in the grade four class.




peace,
spot and rpot


Happy Saturday

The intent to blog on a regular basis continues to be shelved due to life. Hence, I sit here, determined to make some time to type, and aware of the fact that there is no tidy pattern to the posts on this blog.  I like tidy.  There are friends who know this, so they tease when they visit and tip my frames on the wall slightly to the left or right.  It's embarrassing... and I have to align them again before I can relax.

This week put our family a bit out of alignment. Janneke (and I) came home from a 6 days' stay at McMaster Children's Hospital. After her surgery last Friday, we came home, believing her to be in fine form. Yet, by Saturday night, we knew things were not good, and Sunday morning found us at the ER.  We are thankful for the staff who carefully worked through the what ifs and possibilities to find out that she had contracted an infection in her bloodstream from the removal of her portacath.

The end of the story? We are home, continuing with a strong antibiotic, hoping to have our little bunny 100% by month's end. There are nasty side effects with antibiotics, but we would rather fight that at home in our familiar surroundings.



The middle of the story? There are some long days and short nights while living in the hospital. The lights are on 24 hours. Each day is almost its own entity, circling around the events and nurses of the 12 hour shift. There is a lot of waiting, waiting, waiting... for results, for consults, for meds, for time to heal.  That time can feel lonely one minute- and therapeutic the next, as I work through the emotions from the intensity and angst of when we first came in to the ER to the welcomed rhythm of the monitors and children's music playing in our hospital room.



The heroes of the story? Though we welcomed a new face of care every 12 hours, we were in good hands. I typically have some trepidation just before the start of the 12 hour shift, wondering if the new nurse is going to respect my role as Janneke's primary caregiver and wondering if we are going to be able to work together as a team for my kid. I know this doesn't always come true... but this week, it worked.

The pediatrician assigned to our case has known us for 10 years, and while we worked with her, we were also able to consult with our primary pediatrician.  This was a relief.  It is frustrating to meet a new physician who asks the questions you've already answered a million times - and you wonder if they've never opened the already-existing files in the hospital computer.

My sisters and other friends and family were ready to help provide meals, clean underwear, and support at home. These heroes make the stress of being away just a bit easier - particularly as the cost of parking, eating, traveling and cell phone usage are the hidden villains in the story.

The surprise of the story? Janneke's cognitive development.  As the week progressed, I saw a change in Janneke I hadn't witnessed before. She began to tremble with the touch of hospital staff as they did vitals and other tests. She became more restless and agitated with each day. Though I worried she was getting sicker, I also wondered if she was, instead, becoming aware of her surroundings.  In the past, she has not physically responded in a negative way to hospital stays and clinic appointments.  I think that has officially changed. When we laid Janneke in her bed last night, she flinched when our home care nurse started to examine her. Yet, as the night wore on, she began to tremble less. And this morning... she was laughing and kicking her bed walls like old times.  



It's the morning after the arrival home. It was wonderful to sleep on a real bed last night instead of the hospital chair-that-pretends-to-extend-to-a-bed-but-is-sort-of-like-sleeping-in-the-car-except-that-I-don't-have-an-elastic-kid-body-anymore parent bed. It is good to have a coffee this Saturday morning with Ralph. I look forward to catching up with Em, Soph, and Rachel. Though I realize this sorted and normal morning could tip to the left or right at any point, I am going to enjoy this moment for what it is.

peace,
spot

pneumonia or pie?

Last week, we were hesitatingly preparing for a pie party to celebrate Janneke's birthday.

Hesitating because both Rachel and Janneke were dealing with colds and fevers that weren't going away.

Janneke's birthday found us at Mac instead - in the ER, getting tests and meds for pneumonia. The pies were consumed slowly over the week by their big sisters, and we are thankful that 7 days later, Rachel and Janneke seem to be on the mend.



Somewhere in the middle of this foggy week -due to lack of sleep and worry over the kids, my first article was published. I have been given the opportunity to write about faith and disability as it relates to our family.  You can read the online version here.


peace,
spot