ok. ok. ok. fine i’ll do it. I sound just like one of my students.
I’ve been procrastinating doing a blog update for weeks. In my defence I’ve been super busy with back to school. tear. And due to the overwhelming volume of information I was I afraid I would never be able to condense our adventures and would ramble on forever and you’d get bored. zzzz. see. already. rambling.
Holy smokes. whatabluraugustwas. Here is what is sure to be a long-winded synopsis of the second half of our summer.
Let me take you back. We were still coming down off our Bieber high….
And it was grandma’s (my moms) big six-oh! So we had a little surprise birthday party for her. It was so nice to see some of my great uncles and aunts we haven’t seen since our wedding and always say we should see more of! It was such a nice day and i’m so glad we got to celebrate it with her! For those of you who don’t know, my mom has MS and has been battling poor health for 20+years. She was able to stay over for the night and spend the next day with us and the kids. Its great to see her with them and I can’t believe how much Oliver looks like his Nana (the eyes!!!).
And then we were off. Literally! To beautiful British Columbia!!!
A little back story…way back in June when we were at the SMA conference. Families of SMA canada had invited all the executive (Myles is the Ontario chapter president, I am his unofficial side-kick) families out to British Columbia to check out their annual SMA family camp, now in its 13th year! We originally had delayed RSVPing as we weren’t sure with Stella’s surgery what our summer was going to be like. SInce Stella was doing so well we decided to follow up. Unfortunately Myles was unable to go due to work, so it was decided it would just be the girls (Oliver would stay home with the nanny & dad) as mama is just not that crazy.
We scrambled to get all the details worked out. Flights, airport pickups, camping supplies for our arrival. All much more complicated (and nerve racking for this nervous Nelly) than you’d think on account of Stella’s power chair and due to the distance and 3 hour time difference! On a side note (I know I digress) West Jet has a great program were they offer a complimentary domestic (within Canada only) ticket for one companion for handicapped persons. After you jump through a number of hoops, but alas, an amazing program! I also managed to arrange to have my BFF Lindsay join us as she happened to be in BC with her family and the timing worked out perfectly. Arts tarts reunion and girl party!!!
Our trip there was great. we flew with another veteran SMA mom which helped with my nerves greatly. To say we travel with a lot of gear is the understatement of the year. We had a shared checked back, her power chair (which goes into the luggage compartment under the plane), as carry on we have: her portable oxygen concentrator with extra batteries, her pulse oximeter, her bi-pap, her wheelchair toolkit, her suction machine, her food pump and supplies, her carseat, oh yeah and a bag with the usual diapers, snacks, iPad and all my important stuff like passports, keys and wallet. People stop and stare at the caravan that is us. And trust me when I say you DON’T want to be the poor people behind us through security. We were met at Abbotsford airport by a lovely SMA family who had graciously offered to pick us up with their accessible van and whisked us off.
Camp is indescribable. Its like being with family, even when you’re meeting 20+ families for the first time. The level of common understanding is so profound it makes me weepy as I type. These are families just like mine. Fighting the same fight.
The sheer magnitude of camp and all the organizing and logistics is a testament to the Families of SMA Canada team, headed by Susi VanderWyk and her wonderful family. Thirteen years ago they started with 3 families camping in tents at a campsite for a long weekend. This year we had 20 families for 6 days in 17 RVs (rented and loaned), using a local schools facilities for accessible bathrooms, accessible showers, kitchen and electricity (to charge our chairs nightly) and their accessible playground. It is impossible to paint an adequate picture of what an undertaking it is and how beyond impressive the whole infrastructure is. They thought of everything. And then some!
There were so many amazing things about camp. For me the most amazing thing was seeing Stella’s independence flourish. When we arrived she was stuck to me like crazy glue. Within hours she was driving wildly in a “pack” with all her new friends all. over. the. place. It was awesome x 1 million.
Throughout the week we met and fell in love with everyone. 20 very special kids, and their amazing families. Some of the best times were spent in the evening around the “campfire” attempting to roast marshmallows, our daily evening stroll to get ice-cream (ok maybe there were a few bi-daily trips), hanging out at the nearby beach, playing at the accessible playground and eating together as a family everyday.
There was also the hilarious and ridiculous events that were scheduled for daily hilarity and shenanigans. Our first full day began with a pirate ship adventure where we boarded boats and took to the “high seas” to fight pirates (aka the most adorable volunteer high school students who dressed up and acted like we were actually winning) to earn treasure = stickers, temporary tattoos, candy, and more candy. The day finished with an epic marshmallow fight and the resulting “carwash” to clean LOTS of sticky wheelchair tires. We ended the night with our first smores making around the “fire”.
The next morning a few of the moms and young girls hung out and played dolls. We also did some informal physio with Farah, an SMA mom from B.C. who’ve met two times before, and have become quite close with via FB and email. Her daughter Maliyah is just a little bit older than Stella and they get along really well. After “yoga” as Stella and I call it, we took some group photos in all our Never Give Up gear from the Gwendolyn Strong Organization (thegsf.org). The kids thought it was super cute to all match, and Maliyah and Wren (a new camp friend just a wee older than stella) both have iPads granted to them from the GSF. That afternoon we played some t-ball and then spent time at Cultus Lake – at the beach and swimming and floating. It was quite the site to see so many empty chairs on the dock and beach, and so many kids and families having fun in the water! That evening the CRIS Adaptive Adventure group (more on them shortly) arrived and lead a game of flag football. Stella and I had a ball (don’t laugh) despite my general non-athleticism. She gleefully rescued people in “jail” and loved running down her opponents (especially a cute older brother named Michael!). We ended the night with the piece-de-resistance…the obstacle course. First up – the kids. Through the see-saw, back and forth around the tires, into the mini house to retrieve the baton and race to the finish. You might think this was all for fun. you would be wrong. it. was. intense. Timed to a hundredth of a second. Stella being the second youngest racer, and a first-timer did awesome. She also really enjoyed cheering on her friends and oohing and ahhing as they has successes and hilarious failures. Next up – friends and family, dads and then the moms. Like I said before. intense. I thought I could sit back and watch. no. apparently participation is mandatory. This is when I realized how disadvantaged I was. 1. I hadn’t been practising since last year (cough. Kira.) and 2. I’ve never actually driven in the seat of a power chair as I can’t fit my bum in Stella’s seat. So. After convincing Bjorn (thanks dude!) to let me borrow his chair (same a Stella’s Permobile) I gave it my best. so. much. harder. than. it. looks. people. I think I did okay, but alas, results to be determined tomorrow. Off to bed and a vow to start practicing for next year as soon as we get home.
Ok. So the CRIS group is an amazing organization that runs all sorts of sports and recreational activities for special needs people. Most of the team is volunteer based. Each one of the team was warm, encouraging and committed to helping each SMA child experience something truly unique! As an aside, they were also super fun and hilarity often ensued. Stella may have broke a couple hearts! 😉
The next morning we went for a hike. I say that like a Torontonian. I’m thinking stroll through the woods. they’re thinking 1.5 hours up a straight vertical mountain and then back down again. Good thing we had the CRIS crew! They had these cool hiking rigs that the kids sat in all safely strapped in. Then two people – one in front steering, and one in back pushing and lifting (if needed) navigated our ascent of the Teapot. Lindsay and I took turns hauling Stella with one of the CRIS crew. it. was. crazy. and fun. but mostly crazy. Lets just say mama had a killer nap with Stella that afternoon. That night we got all dressed up in our best pirate wear (ok, stella went out on creative limb and went with mermaid theme) for the pirate ball. Dance Party!!! To start the festivities, the results and awards were handed out for the previous nights obstacle course. I couldn’t have been prouder when Stella placed 4th in her age division. I did not so shabby myself – 2nd place and I’m committed to de-throning Kira next year. see I told you. intense.
The pirate ball was a bumping. Glow sticks and all! We danced and tango-lined and danced some more. We also stopped and participated in the candlelight SMA vigil that was happening globally. We had a moment of silence and remembered all our SMA angels who are no longer with us. It was amazing to experience this together. 100+ people, all with tea lights, making a collective wish for a treatment and cure for our sweet babes.
Next day. Kayaking! We chose the “dry” version due to Stella’s bandage, but got watch in glee the other “wet” version group members get splashed, water cannoned, and even tipped! It was a super calm day on the water and Stella just loved encouraging us to “Go faster” and dipping her hands in the water. Love her.
Our Afternoon activity was tandem recumbent biking. This was really cool and surprisingly fast! Although that didn’t stop Stella from prompting us to “Go Faster”. My little speed demon!
The day finished up with a scavenger hunt through the park. We tried to get Stella to try zip-lining but between the weather (raining) and how itty-bitty she is, she wasn’t having it despite the heroic efforts of the CRIS team to make it work for her. Maybe next year.
Our last day was probably Stella’s favourite. Horses! Each one of the kids and siblings all got a turn riding. We have been interested in therapeutic riding at home but haven’t had any luck with leads. Stella got to ride with her BFF Amy (Susi’s youngest daughter), it was great to see her experiencing it and LOVING it! Since our return home Stella has asked a number of times for a horse. Ruh. Roh. I’ll mention it to Grumpa and see what he says! 😉
When we were done, Lindsay watched Stella for me while she napped, and I headed over to Susi’s house in nearby Chilliwack to see her home modifications for her daughter Holli who is 17. It’s always such invaluable information to see what other families have done and the equipment they use. I especially enjoy all the “hacks” and how they’ve ingeniously adapted regular items for medical use! I made sure to take photos and video for Myles! Mr. Hack-it himself!
We got back just in time for the talent show. I tried explaining the concept to Stella. With difficulty. We finally arrived at the decision that she would sing. Stella found herself a mic and signed up to sing some Katy Perry. We had poetry citing, singing, and even a cool cup game/song. When it was Stella’s turn, as I had predicted, she bailed. Don’t worry Stella, stage fright gets to the best of us! (Please note this did not stop her from belting it out later in our RV when she was suppose to be going to bed. Baby, you are a firework!) The show ended with a laughingsohardyourecrying dance and lip synch boy band performance by a bunch of the older siblings and teen volunteers. Stella loved it. And now she likes One Direction. Ga!
The next morning we packed up and said our goodbyes.
We are so grateful for email and Facebook that allow us to stay connected, but its just not the same. I really hope that we are able to again sometime. This was beyond great. For Stella and for me. At camp we are just like everyone else. We are normal.
Our flight home was unfortunately a gong show. We checked in heaps early, went through all the medical equipment with West Jets check in staff at length. Got our approval stickers. Proceeded to pre-board Stella, got her in her car seat, dismantled the electronic parts of her power chair to protect them during transport, all our carry-ons in overhead compartments. And then all hell broke loose. They started asking about her oxygen concentrator. The one with the approval sticker on it? The one I already flew to BC with? The one I had to have my doctor prescribe, had to specially order from the oxygen supply company, and had to call ahead of our trip to your medical desk to note the make and model? Yes that one. Do I have the hardcopy doctor prescription and flow rate? No. Because despite numerous calls to the WJ Medical Desk, they said I had everything I needed. Holy crap. I will save you from the extended drama version, but they basically wanted us to get off. As a special bit of irony, during this drama I did managed to get a call into the WJ Medical Desk and verified with them that I should be clear. Should. Clearly some communication issues! And thats when the public crying started (I REALLY try to avoid this). Just a bit overwhelmed and panicking about being stranded so far from home. Thank goodness for modern technology, my husband 4000 kilometres away, and our typeA organizational skills as Myles was able to text me a copy of our extensive Air Canada paperwork (they make you jump through hoops too, but at least its all laid out for you) from June which included all this information that they were SUDDENLY asking for. I don’t need this stress! Finally resolved. Finally boarded, only an HOUR late! Pass the wine.
This is possibly the longest blog post ever.
While Stella and I were away, our outdoor hardscaping began. Our goal was to make the outside 100% accessible for Stella and to widen the driveway to accommodate the wheelchair van. They tore up the old (single) driveway, the path to the stairs, the old stairs, the old pavers along the side of the house. Two weeks later (and a lot of dust) we now have a double drive with plenty of room for stella to get around without having to off-road onto the front lawn (not ideal in the winter!). A new gradual path to a pad (for a future porch lift) and the new stairs which lead to the new porch top (which is now flush with the front door). She now can also drive straight into the backyard via a new widened path alongside the house which leads to a gradual ramp up into the the backyard and a nice big pad for her to play and drive. To say she LOVES it is an understatement. You’ve never seen a child so excited about concrete. It gives her such freedom and she just loves to drive and drive and drive some more. We are still waiting on funding for the porch lift (insurance companies are NOT my favourite) and can’t wait to get her driving back in the house!
We were home for a week and a half and crammed as many playdates in as we could, a visit to Uncle Ted’s organic farm market, a birthday celebration for great papa who turned an impressive 91! We’ve also had as many bike rides and ice cream cones as we could. We also had which has to be our all time record number of appointments in a short period of time. Stella saw the dietician, the dentist, physio, and had her Gtube mic key button procedure and a power chair tune up. Oliver saw his pediatrician. And I did my back to school prep of dentist, hair and doctor. I also threw my back out that week. Not convenient when you HAVE to lift one of your children everywhere. So I also saw the chiro and massage therapist. B to the usy.
And then we were off again! Luckily this time it was the whole family!!! We spent 4 days in Bobcaygeon visiting Myles’ parents and grandparents. We hung out at the beach, swam, and met some great new friends! Oliver worked on his serious dirt obsession and Stella fished, caught minnows, found a pet caterpillar and even went tubing! Myles’s parents watched the kids one evening and we even got to go out for a date! Fantastic!
Then we headed to Haliburton to spend 3 days at Myles’ Uncle and Aunt’s cottage. We got to visit with his cousins as well which was awesome! There were lots of kids (mostly naked!) running around, great food and lots of catching up!
What a great end to our summer! The best part was just spending time together as a family and really enjoying how amazing our kids are. They are growing ups SO fast and constantly amazing us with their kindness towards each other, their interest in EVERYTHING, and their ability to make us smile, laugh and truly appreciate our crazy life.
We are already counting down the days until NEXT summer! Mostly because we have some exciting news to share! Part our trip out to B.C. was “research” as we are planning on starting a FSMA Family Camp in Ontario!!! YAY!!! We are still working out the details but we know its going to be amazing!!! We will keep you posted!