Bear and I will be the first to admit that running our world requires help. In order to function we rely on our five care staff for William but beyond that there is a team of several invested medical professionals, family and friends.

We choose our friends carefully because we feel most comfortable around people who don’t pity us, don’t judge us, just love us no matter where we are at and value what we can bring even if it isn’t much sometimes.

Bear and I try to be as self-sufficient as possible but the reality is we do need help occasionally and we are lucky to have my parents who can step in and are willing to drop everything when we need them. There’s no denying that usually help is required when William needs both of us at one time and we are trying not to impact our girls’ worlds – we try so hard to prevent them from carrying the weight of a little bro with exceptional needs. My parents are the ones we call when we need reinforcements.

There have been a few moments lately where I have needed support when advocating for William and I have been blown away by our medical team with their investment and willingness to help. Most recently, I needed a new monitoring device for William and I was rejected by our extended health. I emailed our respiratory technician and told her I’d just have to pay. Her response was, “can I help you appeal the decision?” I had resigned to the fact that we were going to have to pay and frankly I was exhausted by the never-ending requests and denials. She wrote a letter that blew my mind and the next day it was covered.

She did not have to help me, but she did and, unknowingly, this act of kindness fuels me to continue the endless fight.

We are going through the process of getting William in for nerve freezing to help with his tone and we were scheduled for December 10th. The evening before, I received a call from a doctor we had seen in the PICU years ago. He informed me that the plans may not best suit William’s safety and needs. He saw William’s name, remembered us and is now working to create a scenario for William to receive this treatment in the safest way for him.

He didn’t have to step up but he did, and this act of care gives this mama bear reassurance in going through with a procedure that was feeling a bit scary.

Our paediatrician is our rock. She is beside us no matter what we need. I can message her at any time of the day and she is there. I have called her office in tears feeling completely helpless and I’m ALWAYS supported and William always gets what he needs. She adjusts her schedule to accommodate home visits rather than making us travel to her office and she genuinely cares about me and how our whole family is managing every time we chat or message.

This kind of support is priceless in a lonely world of raising a child with special needs – it’s like a reassuring hug.

Our experience with the medical system has been harsh at times but man oh man I don’t know what I would do without the selfless care our medical team shows toward our little boy and me. I often say that one of the silver linings of a life with William is the beautiful people we have met along the journey.

We all have a choice to get sucked into the negatives or look for a positive. I try to remind myself to keep an open mind and not give up – challenge accepted. But man it’s hard sometimes and then little drops of magic appear and I’m reminded that I’m not alone and there are good people in this world who I can count on – they are my village.

~ 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.