Routine is big in our world because William relies on it. Medication administration, meals, sleep, down time, school time, physio time, pool time and standing frame time along with appointments and normal home duties are all pretty well scheduled.

Within the routine, there are special moments every day that make my day.

The morning greeting. When I see my little boy for the first time in the morning, I’m overcome with some relief that he made it through another night. I kiss him on the forehead and tell him I love him and he responds back with some happy noises and makes eye contact that melts my heart. I feel his love for me and that he’s grateful for my touch, my voice and the conversation that follows with his caregivers. I know he feels a level of security knowing I’m around despite always being in good hands with his team.

Once William is out of the bath and back in his chair he heads out to watch TV while having his neb treatment. His caregivers are often busy cleaning up from the night so I sneak in to kiss his little face and make sure the neb mask hasn’t slipped. I hold his little hand and talk to him about how he’s feeling. I run my fingers through his hair and scratch his arms and legs and often rub his feet. I comment on how great he looks and have a little giggle about how chubby he’s getting. He smiles at me through his neb mask and I let him know my plans for the day so he knows when he can expect to see me again.

After our morning ritual, I scurry off to get a few things done and return for my next Will fix at the end of physio. He always finishes physio with tummy time and I take this opportunity to get down on the mat with him, rub his back, whisper in his ear, lay next to him and wrap my arms around him or sometimes I lay right on top of him for a mama bear hug.

Each of these times is a bonding moment for us and I think we both cherish our intimate connection. Our souls are connected in a different way and with each interaction I am acutely aware of my senses. William triggers my gut instincts and even in silence I can read him and feel what he needs. I get an immense amount of pleasure from these every day moments but they also play a key role in establishing his care plan for the day.

My next favourite time is when he’s chilling out before bed. I lay down on the floor and we spoon while watching one of his favourite shows. It doesn’t last very long because he has a routine before bed but at least I get to have that little, quiet moment to enjoy something with him that he enjoys. As soon as I pull him close, I can feel his body relax and we get to just be mom and son for a moment. I always wish him sweet dreams and kiss him up and give him a squeeze.

My final favourite is after William is in bed. I head out to pick my girls up from school. I have a half hour drive to the school so I chat to my parents and catch up on our days. As soon as I pull through the gates, the girls are waiting. They load all their bags in my car, their sweet voices say, “hello” and they melt into their seats exhausted from their long day. The first question is always, “How’s William?” I always respond briefly because I can’t wait to hear about their days. They take turns filling me in on classes, their social life, their struggles, what’s coming up and test results. It’s like their stream of consciousness from the day and it lasts the entire drive home. Sometimes I purposely drive slow so it can last just a little bit longer.

Routines can become mundane and draining but finding the special moments and acknowledging their value and importance, breathes life back into my life – challenge accepted!

~ 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.