I’ve mentioned in the past that Bear and I make every effort to allow our girls to just enjoy William as their little brother. We try very hard not to put any of the heavy stuff on them. They are free to build whatever relationship they want with him.

So, until today, their relationships have been full of reading, watching TV, building lego, tickling, giggling, quiet little check-ins, hugs, snuggles and light-hearted interactions. Of course, the girls see when William struggles and they see what it takes to care for him. They offer assistance when they can and always ask how he’s doing if they have been busy with their own lives. They are well-versed on his routines, medications and feeding; however, these things have never been their responsibility or cause for their concern.

There has been discussion in our home lately about caregiver schedules needing to be adjusted and to my surprise, my oldest mentioned an interest in playing a bigger role with William.

I was a little surprised because I know she knows it’s no small task and we rely on whoever is caring for William in order to execute the other aspects of life.

In my ‘mom’ voice, I asked Mimi Pie how she would make it work with her busy schedule and confirming if it was something she was really prepared to invest time in. Then I switched to my ‘potential employer’ voice and proceeded to lay out expectations and how she can prove she is ready for this kind of responsibility. I reminded her that she would have the same responsibilities that all our other caregivers have and that she would have to be reliable and responsible.

I’m sure some people would question if a 17 year old is capable of looking after a little boy with the kind of needs that William has.

My experience is that age doesn’t matter as much as a person’s genuine intention and ability to love my boy. Some of my best caregivers have been young and eager and just simply ready to learn and be part of William’s life and development – people who just want the best for him.

I can teach the skill set necessary to maintain William’s health and comfort – I can’t teach someone to care.

As I wrapped my head around Mimi Pie’s interest in working with her brother, I put the ball in her court. I introduced her to the schedule and told her she would have to take ownership of learning. She would have to pick times that she could train with our team. The very next morning she was up and ready to go by 7am to work with one of our caregivers. I was a little shocked considering it’s summer and she could have chosen to sleep in longer. I was even more shocked that she stayed with Wiliam until noon when she had another commitment.

I watched closely from a distance and what I witnessed were moments that would bring any mom to tears. She was engaged, she was interested, she was asking insightful questions, she was hands-on, she was gentle and she possessed a level of care with her brother that could never be replicated. She spoke to him with kindness and a sense of humour – she knows full well he understands her. And his happy little face was the icing on the cake!

The morning consisted of bath time, his physiotherapy session, standing frame, cleaning up and several moments of sister torment followed by smiles and laughter from both of them. Mimi Pie has seen all these events happen daily for years and as I watched the morning transpire, it was as if a sense of lightness came over me – she showed me that the bond between her and her brother runs deep and that her care for him is big and unconditional.

I guess we’ll see if I get to witness another shift like this one. But for now, I’m relishing in this beautiful morning.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.