After months of appointments, fittings and trials, William’s hearing aids had arrived. We booked the final appointment to head down to Victoria to have them set just right for him. We didn’t get anything particularly fancy but they are shiny blue for our little man. Our appointment was on a Friday so traffic wasn’t the best and it made for a long day. However, William was a champ and hadn’t started melting down in the car so we decided to stop for dinner with him – surprise surprise he was happy to be out and social with our family. The girls had the day off from school so they were along for the ride which was nice – they are incredibly helpful with entertaining William and some of the heavy lifting on outings. And, of course, William adores them.

Our care team was very excited to have the new hearing aids. Saturday they were in his little ears all day and communication notes were written in the book. With new, expensive equipment, we are very cautious and give everyone clear parameters for their use. Hearing aids are SMALL and easily fall out of William’s ears with his dystonic movements. There is a safety strap that attaches to each hearing aid and then clips to William’s shirt which was to be worn at all times. Instruction was given to never leave the hearing aids in when he’s using the potty. When he isn’t wearing them, they should be in their charging dock because if they are left around, the dog or cat may get to them. The list goes on.

Sunday morning rolled around and of course a nurse bailed for the afternoon shift. We had a busy day planned with the girls’ rugby games, mamie and papa visiting and the other normal Sunday activities like grocery shopping, cleaning and homework.

When a nurse doesn’t show up my husband, Bear, and I have to evaluate necessities and priorities and then divide and conquer. Bear got William and I got everything else on this particular Sunday.

The caregiver that morning was newer to our team. She has a heart of gold and William responds so well to her. While she started with William, Bear and I got ready for the day. I headed out to do the running around and he planned to do a quick workout and then take over for the caregiver. While I was out, the shit hit the fan.

When I returned home with the girls happy and mamie and papa in tow, I turned the corner into the kitchen to find poor Bear white as a ghost, hands up in the air like he was under arrest and wearing exercise clothes that clearly hadn’t been exercised in. 

Hands still in the air he said, “where do you want me to start?” He was absolutely beside himself. He proceeded to tell me that one hearing aid had been lost, William had been sick a number of times and it had been chaos while I was gone. I think I was like a deer in the headlights while being acutely aware of the fact that my parents were there and were seeing a glimpse into “our chaos.”

I try to avoid anyone seeing our chaos at all costs. I just want people to be able to enjoy William and enjoy our company without having to see the tough stuff. 

Bear is the most level-headed, calm, reassuring, stable human I know and for him to be feeling this out of sorts, it must have been a wild morning. As he proceeded to tell me what had gone down and answer my questions, I slowly started moving to get things under control and he followed with more information. I quickly got William’s stomach settled. I got him comfortable in a chair so that my mom could read to him and keep him calm while I got everything else under control and calm again. My dad and Bear continued hunting for the missing hearing aid and the girls pitched in by cleaning things up – without being asked.

When days go sideways, Bear and I critically analyze how we could have done things better to avoid mayhem. Could we have written the communication better? Could we have trained staff better? What do we need to do going forward? This conversation is all taking place while we are hunting for this $3000 hearing aid that was most likely flushed down the toilet, intermittently venting the air out of William’s stomach, answering questions from my parents and the girls and trying to be as gentle as possible with one another in a moment of high emotions. While discussing what we could do better, there is also an element of reminiscing about all of the other things that had gone sideways over the last couple of week – could be classified as complaining. Sets of nasal canula broken, power chair being rolled down to the barn and then back into the house and William’s feeding tube coming disconnected and dripping into the electrical part of the power chair. We quickly agree that dwelling on the past is not valuable but then discuss plans to put in motion to hopefully prevent the preventable.

When I finally had some quiet time to think, I realized that every day has some level of chaos. Bear sees a lot of it but I’m the one that deals with most of it while he’s at work and when I arrived home that Sunday and got to William, there was an immediate sense of calm that came over him – it was like he knew I’d handle everything and he could relax.

I hope I can always be Wiliam’s calm – challenge accepted!  

This particular Sunday was one for the books but the hearing aid has now been replaced under warranty, our caregivers have all learned lessons with us and my mom and dad have a slightly less opaque view of what it’s like parenting our sweet William.

~ 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.