Wednesday, August 17, 2016

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,

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

Sunday, July 24, 2016

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.


Sunday, May 22, 2016

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.


Wednesday, May 11, 2016

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?


Wednesday, May 4, 2016

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.

spot and rpot

Saturday, April 23, 2016

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.


Sunday, March 20, 2016

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.


Sunday, March 13, 2016

Happy Birthday, Janneke

it's an older photo but a favourite...

Seven years ago, on March 14, Janneke Grace joined the Pot family.  Ten years ago in March, we learned of Rachel's abnormalities while she was still in utero.

March is a month filled with memories that are both sweet and complicated.

Perhaps it's like any intense moment in your life - that you can recall specific details as if it were yesterday, no matter how much time passes.

There are times when we reflect together on the births of the girls.  It's almost as if we need to revisit those moments from time to time to help sort the rest of the years that follow. The birth of Janneke spurred a sorrow that had been hibernating since the birth of Rachel. Though we celebrated the new life of our little Janneke in that birthing room, her presentation of special needs broke the spirit we had bolstered in maintaining normalcy with Rachel.

Seven years ago, Janneke Grace was born in Grimsby, transferred to Sick Kids in Toronto, and later sent to MacKids in Hamilton.  Janneke finally met her older sister, Rachel, six weeks after her birth. It was a dizzying time in the Pot family, and we had a lot to process during that time. Today, we sat with Em and Soph and watched an old slide show video that Ralph put together shortly after Janneke's birth. Seven years later, and we are still processing.

Happy birthday, Janneke Grace. Can't believe you are seven already.

Grace finds beauty in everything.

Sunday, March 6, 2016

back in the saddle

I received the gift of three days in Alberta last week to be with extended family as we celebrated the life of my aunt Marie. We did a lot of talking, laughing, walking, crying, and eating.  It was good - hard but good.

Three of us ran together on the morning of the funeral. Running runs in our family, and Aunt Marie would encourage her kids not to give up by telling them their feet were saying, "Keep on going, keep on going." And so we kept on going for the 8 miles between two of the family properties.  It was a beautiful morning, and the conversation was rich. I realize not everyone enjoys a run... but it set an appropriate tone for the day. 

I am thankful once again for the gift of family and family memories that spur me forward.

* * * * * * * * * 
This past week, we had our once-every-couple-of-years visit with the genetics team at SickKids Hospital in TO. Though we debated taking public transit, we drove our van in.  It was the same day they forecasted a Big Storm (snow storms are almost proper nouns now, given all the sensation with media).  I guess everyone was so concerned about the Big Storm that they stayed home. We drove with sunshine, little traffic and on bare roads.

We were able to combine our visit with a peek at our niece Mariah (behind the till) who works at the Starbucks in the same building as our genetics team. That was not known until we walked past the coffee shop before the appointment. It was great to see her - and have something to lighten up the otherwise tough afternoon.

Our genetics team is great, and they are always encouraging with each visit, but admittedly, it is hard to have every inch of your kids' bodies examined, documented, and discussed - particularly the abnormalities. It is way easier to walk into a livingroom filled with family who immediately point out you have Uncle Frank's nose or Grandma Jan's smile.

I appreciated how the team set a positive tone to our appointment by first sitting with us in a room filled with sleepy sunshine and asked what the girls can do. They wanted to list all the positives... and every word was noted on the file. It was only after they asked, "Is there anything else you would like to tell us about the girls?" when they started examination of the anomalies (problems).

With each genetics appointment, we are reminded our girls are not typical-normal. They may never be diagnosed, and they may continue to catch us by surprise with their development. We try not to be too discouraged by the realities of their anomalies, but when we come home from these kind of appointments, I experience an odd two day lull where I feel disconnected from reality. I have a hard time initiating tasks, and I spend too much time thinking. 

By the second day, the fog fades and the feet are on the ground again.

"Keep on going, keep on going."


Monday, February 22, 2016

till we meet again

After some time away from the blog, I was ready to write again. And a post was percolating last Thursday in my mind when news came regarding family in Alberta.  My aunt Marie (deWit) Lievaart, my mom's youngest sister, died on Thursday, Feb. 18, 2016 surrounded by family in a Calgary hospital.

My post will wait.  I would like to share this instead:

I typically go by the name Sara or Spot. Yet, these past few days, I've been holding my second name closer to my heart. I am Sara Marie... after Aunt Marie. She was just 19 when I was born, and she was always the "young" aunt with an infectious laugh. I was her four year old flower girl, and as extended family, we always enjoyed the Lievaart visits to Ontario. I remember car trips to Alberta with my family, and in 1994, I traveled on my own to visit her, following an out-of-sorts college year. She taught me how to drive a truck Alberta-style, and sent me to a rodeo with my (little) cousins.

After the death of my mom, Aunt Marie took the time to photocopy all the letters my mom wrote her over the years.  My sisters and brother treasured that glimpse into Mom's life through the letters.  I also appreciated the letters Aunt Marie wrote me.  I am not sure electronic communication can truly replace a handwritten letter.

After the births of Rachel and Janneke, Aunt Marie's experience of working as a nurse in the community lent itself to encouraging me and advising me. I remember calling her in 2009 when my panic attacks started, and she listened patiently to my concerns. I will miss mailing her colourful Ontario leaves in the fall. My mom did this for her from time to time, and when Em and Soph were quite young, one October, they insisted on mailing Aunt Marie leaves from our maple trees. Soon afterwards, the girls received a photograph of the leaves hanging on her wall.  Em and Soph were thrilled.

Aunt Marie was a gem. She will be missed.  I am including her obituary here. What I love is that the family chose Rehoboth Christian Ministries, which works to empower persons living with disabilities, to receive memorial tributes in Aunt Marie's name.

Thank you, Aunt Marie, for living out joy.

Sara Marie

all Joy reminds. It is never a posssession,
always a desire for something longer ago
or further away
or still "about to be."
c.s. lewis