Jack has been wanting to watch the movie ‘Wonder’. We read the book together years ago. Bedtime reading was a regular routine of ours after I had Kate settled and into bed. It was a time for me to have time with Jack. I loved reading as a child, I loved reading to my kids.

If you’ve seen the movie ‘Wonder’ or read the book, you’ll know all about the main character Auggie who had Treacher Collins Syndrome. I have views on the casting for this movie, a story about inclusiveness, the judging of others, compassion for one another, where the lead character is a ‘typical’ child who sat in a makeup chair for several hours a day. Jacob Tremblay, the actor who plays Auggie Pullman, does an amazing job – but I ‘wonder’ if a child with Treacher Collins Syndrome might also have been equally amazing.

This was not the point of this post – but something I wanted to share.

The point of this post is the secondary story in the movie, the story of Auggie’s sister ‘Via’. She is an incredible big sister by all accounts. A champion of Auggie, a confidante, a cheerleader – she’s stoic and she knows that the needs of her brother supersede hers. He has greater needs, that are often more immediate. It’s just that simple. And this affects Via deeply, particularly when she is going through her own teenage issues and has that basic need of time and attention from her parents. Her parents are distracted and they are simply not available to Via. As you watch Via try to cope on her own, if you are a parent who understands that dynamic of caring for a medically fragile or complex child, your heart breaks for her with the knowing.

As ‘Via’ tells the story from her perspective, my eyes welled with tears. “Is this how Jack felt”? He was three when Kate was born and toddlers typically take a back seat to their infant siblings out of short term necessity, but often the balance is righted again eventually. That never really happened for us, or Jack. Kate’s health, mini-crises, big crises, changes in her needs, were all consuming.

Jack had access to many things, he had friends, I arranged playdates, he played sports…but it was different. The expectations around independence were different. I was often gone unexpectedly with Kate to the hospital – sometimes leaving for the ED in the middle of night. I was there with Kate over his birthday and Hallowe’en… Mother’s Day. Special days when that connection with your kids is so fundamental. Jack had to help a lot more than would be typical. He did a lot of the work of a caregiver to support me in helping with his sister. He understood this and he never questioned. It was normal to him, and as he grew older he took on more and more responsibility – often unasked. I also don’t ever remember it being an issue, but now I wonder if it was having an impact on Jack that I wasn’t aware of – or didn’t have the time or energy to attend to.

I know I am not the only one in this. It’s a common worry – a valid one – of many families with medically complex kids in their lives.

Our family settled into a life of revolving around Kate. She took up so much space in our lives. It was out of necessity. To take a line from Wonder, she was our sun and we were planets orbiting around her. 

Was I there for Jack? Was Jack a Subplot?

I’m not sure. I think I was. At the really important times, but did I pay careful attention, did I miss critical points to support him?

Recently we attended an event in Kate’s honour as a family. The boys did not want to be there – especially Jack. I thought it was important (I still do) that we were there together. But now I wonder if Jack needs to spend that time still orbiting his sister and her memory?

There has certainly been a lot of attention on Jack in the past while, but it has taken time. I was not a very functional mom for some time after Kate’s death. Jack is still vigilant of my energy, my sadness, my ability to get through the day. He watches his dad too. I know it, and it saddens me that this boy is still accommodating others so much. I am trying to teach him now that he can put himself first, he can advocate for himself, and that we are there for him. We are fully present. He is our priority.

Wonder has many messages. Powerful ones about what it means to be a friend, and what it means to have true strength. Auggie is the hero of the story, but when I watched it my eyes were on Via.

Julie