Summer

As the school year comes to an end, my sights shift to the crazy schedule of summer. William’s schedule basically stays the same but blending it with the schedules of everyone else in our home is the annual challenge.

This year, the oldest got herself a full-time job and still doesn’t drive so that means Bear and I share the chaos of getting her to and from said job at random times of the day. She is also doing some summer studies preparing for her grade 12 year, SATs and university applications. Both girls are heavily involved in summer rugby programs so lots of training, camps and games. There are fun summer events and fundraisers along with the impromptu activities that come up too.

Although William’s schedule is the same, there are opportunities for him to head out to events in our community and his care team does such a great job making sure he gets to participate. We make a huge effort to coordinate opportunities for him to experience what his sisters are up to as well but it’s not always easy and there are significant hurdles that we will always face.

The care team has fairly regular shifts and I try to set their schedules months in advance so when things come up, it’s often hard to switch things around to accommodate William attending. Shift-change times often prevent William from being out of the house at certain times. The heat in the summer makes it hard for William to be outside for any length of time. The locations of the events are often not wheelchair accessible. And he has regularly scheduled appointments and therapies that we prioritize for him.

There are so many moments through the summer that I reflect on what it would be like if William did not have cerebral palsy and everything that comes along with it.

It’s in the moments we decide to grab a quick bite to eat on a sunny patio after a long day and he isn’t with us to enjoy our family banter.

It’s in the car rides to rugby games when I look in my rear-view mirror and wonder what it would look like if he was sitting in that middle seat between the girls.

It’s in the moments when I’m dragging two kids along and feel like I should be dragging three.

It’s when we are having a family movie night and William is already in bed.

It’s when we are celebrating a rugby win and he isn’t there.

It’s when the girls are tormenting one another and realizing he will never torment them.

It’s in beach days without him.

It’s in skipping camping trips or holidays because I’m just not prepared to plan another event without him.

It’s in moments I see other moms dragging younger siblings around to things and wishing they could have left them at home with the grandparents.

If I dwell in these moments for too long, the sadness takes over. But if I focus on the game he did make it to or the dinner he did attend, I can strive to create the next family moment that we all get to experience together – challenge accepted.

Recently, the weather and location were just right for a rugby game and William was able to watch his Mimi Pie coach and his Beast play. His eyes were locked on both girls and he was so happy. He was chatting and meeting new people and it’s in these moments I feel whole. I also see the pride my girls have for him – they want him there too.

Bear, Beast, Mimie Pie and I all feel the empty seat in the car, the empty seat at the table and the feeling of leaving someone behind. This is “our normal” and it reminds us to make the most of each moment we have with William.

One of the sweetest things is hearing one of the girls chatting away with him about everything going on in their world – these moments fill some of the empty ones.