About 7 years ago I started a battle that I was not going to back down on.

William had been in the hospital countless times and one day I just said enough is enough.

My husband, “Bear” had taken a new career in order to support our family so that I could stay home with William and this forced him to be in Vancouver or Calgary during the week and only home on the weekends.

Being in the hospital all the time was not realistic with two other small humans depending on me. I knew I needed help in my home as there just wasn’t enough of me to go around. I remember vividly, crying to my husband on the phone as I packed up all three kids to head into the hospital because William was sick, AGAIN.

After the ER mayhem William landed in the PICU with a respiratory infection and was in for about a week and then they said he was ready to go home.

I refused to take him home.

When William is in the hospital, staff require me to be available because of his highly specific needs, he can only be admitted to the PICU because of his respiratory requirements and even though it is a 1:1 ratio of nurse to patient in the PICU, it is difficult for one nurse to manage William alone. I knew I had to put my foot down. My foot remained down for another 4 weeks. Maintaining William’s health and holding my family together were dependent on me not backing down – challenge accepted!

William was finally assessed for in-home-care and was granted nurse hours. He was also approved for O2 and high flow air at home. The thing I remember most about this time was my feeling of loneliness and embarrassment, but once everything was in the works for nursing care, the hospital staff praised me for my advocacy efforts.

Since agreeing to leave the hospital on that day, we haven’t been back and I credit that to having help at home. It isn’t easy having people in your home but it is a necessity on so many levels, and continues to be, to this day.

Our care team has changed over the years but each one of them has been amazing. We usually have a few care providers on rotation and shifts vary but I can’t imagine my, my girls’ or William’s world without them. They are part of my social life, they are my support, they are invested in William and our family, they all have become like family and they allow for some level of normalcy.

They allow me to be a mom a little more often than a nurse and that is priceless.

My schedule does revolve around the caregiver schedule. There are certain things I can’t do unless I have a second set of hands. Going out of the house with or without William requires a second set of hands. All of my outings are planned well in advance. Yard work, home maintenance, exercise, driving the girls around to events, errands, any kind of shopping and anything else the average person leaves the house for requires additional hands. William’s team are my extra hands and they love and support him with their whole hearts.

~ 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.