A spring break to remember

*Update: Simon’s surgery was pushed back to March 19th to accommodate the need for neuromonitoring during the surgery.

On January 30th at 9:36am an email from BC Children’s Hospital landed in my inbox confirming a March 13th surgery date for Simon. We had been waiting for this since the summer, so it was partly a welcome surprise when it finally came through, but it was also a sudden reality check about how our life was about to get turned upside down in a matter of weeks. It’s been a total blur of a two weeks since then as I’ve been busy juggling all sorts of coordination during whatever time I can find in between work and normal working parent stuff.

First I had to notify Simon’s team of specialists and get as much information from the surgical team as possible. Then I put in a request for a BC Children’s Hospital social worker to make sure we have the logistics of the hospital stay sorted out along with a crash pad at Ronald MacDonald House. The next complexity was initiating conversations with Simon’s school team about accessibility options as Simon starts using his wheelchair pre and post-surgery. Retro-fitting old schools for true universal design is seemingly impossible, but I think the school team is open to learning and adjusting through this experience with Simon and giving him the best learning environment possible. It will very much be a work in progress and I’m happy to have kick started these conversations nearly a year ago – knowing this surgery and Simon’s decreased mobility was inevitable.

In Simon’s current classroom, he can’t access any part of the school – even a bathroom – without venturing outside through heavy, non-automatic doors and around to a part of the school with a ramped entry and accessible bathrooms. I wish there was a magic wand to give Simon a more inclusive experience, but for now it’s the best the school can do. In the future we will hope that Simon is placed in a classroom with better access to bathrooms and the elevator for accessing all the different parts of the school. For the current situation, I’ve asked that the entire class use the same route to music and gym so that Simon doesn’t have to go solo every time the class moves to a different part of the school. This advocacy work can be the most draining for me, as it’s such a delicate dance between being firm / demanding and flexible / understanding. Like everything in parenting, there’s no how-to manual here – but I just hope that as I fumble my way along, I help open people’s eyes to the complexities of creating inclusive spaces for kids like Simon and that the tides of change start to move more quickly. An inclusive environment is better for every single human being at the school, not just the kid with the unique needs.

Getting back to what’s ahead for our spring break to remember. . . . for those of you who are interested in knowing a bit more about what Simon’s March surgery entails, I thought I’d share it here. The more info our community has about what is going on, the more people can try to understand. On March 10th, Trevor and I will head over with Simon to BC Children’s Hospital for a full day of pre-op appointments on the 11th, an infusion in the medical day unit on the 12th and then an all day surgery on the 13th. If all goes as planned, we’ll be in the hospital for about a week until Simon’s pain management is under control and he’s stable. He’ll wake up from surgery in a full chest to ankle body cast, so I can only imagine what a wildly difficult week it will be for him. And he’ll be the champ he always is.

We’ll then head home (not quite sure how to get a kid in a body cast home via BC Ferries, but we’ll find a way) for about 4 or 5 weeks until his cast is ready to come off. Those days will be tough and we’ll take it one step at a time as Simon adjusts to life with almost no mobility and zero independence. Not quite the spring break we were dreaming of, but it will certainly be memorable! Hopefully the spring sunshine will make for revitalizing time outside and walks to the ocean – god knows we’ll all need it desperately!

We’ll then head back to BC Children’s and will check into Sunny Hill (the rehab part of the hospital) for a 6-8 week in-patient stay to get Simon up and learning to walk again. If all goes well, we’ll be back home to a new ‘normal’ in by early June.

So what exactly is Simon having done? It’s a double hip osteotomy and a rebuild of his pelvis and the hip shelves. I’ll spare you the technical details, but suffice it to say, this most is most definitely not your grandma’s hip replacement. This is a complete rebuild of the top of both of his femurs and the sockets in which the femoral heads sit. While he’s under, they’ll also add a couple of new knee places as part of ongoing guided growth to better align his legs, and for ankle stability, pins will be placed in both ankles too. It’s completely unfathomable to me, I can’t quite wrap my head around it all – but know that I don’t need to. Time will tick along quickly and we’ll be through it before we know it. I can’t wait to get to the other side when we can focus on rehab and getting back to normal.

Why are we doing this surgery for Simon? Well, the hope is that it reduces his daily hip and back pain which should increase his stamina for keeping active. It’s by no means a miracle but it’s another lifeline that will improve his quality of life and set him up to thrive in the years ahead. It’s going to a be a long road to full recovery, but we’re confident it will be worth it in the end. Thanks for being interested in what’s going on for us, it means a lot. We’re overwhelmed, hopeful, nervous, energized and exhausted all at the same time. We know we can handle whatever this part of the journey holds, so here we go!