I remember going to our very first appointment to talk about getting a wheelchair for Ben. It was with the Remedial Seating department at the IWK Children’s Hospital in Halifax.
I remember feeling rather unsettled that we had reached that stage with Ben.
The simple Perego stroller and ethafoam insert wasn’t doing the trick for him anymore. The only realistic option was to transition to a paediatric wheelchair.
But I didn’t want to go there since it was an admission that Ben’s physical disabilities were becoming more complex, and we were losing control.
I didn’t mind our weird looking stroller. Sure, some people stared. But having to use a wheelchair took weirdness to a whole other level, and it would mean just about everyone would be staring at Ben and us, no matter where we went.
We were presented with different types of wheelchairs along with a list of add-ons and options and needed to make some decisions.
One thing that stood out for me was my outright rejection of a tilt capability which would allow the chair to be reclined at almost any angle.
In my mind, it seemed like a waste money. I was more than capable of managing any small positional changes that Ben would need. We didn’t need a tilt mechanism to help with that.
We did manage, for the next 9 years, until the wheelchair didn’t fit Ben anymore.
During that time, a lot had changed in our lives, too -- like, bringing in caregivers to support Ben’s everyday needs, the noticeable wear and tear on our bodies, and the (eventual) disappearance of my guilt that we had failed Ben.
So, this time we went all in. We focused on getting the best possible options that would enhance Ben’s independence and would take into account that there were now other capable persons to provide the hands-on care.
A power wheelchair that Ben could control himself ... and … a power tilt option!
So, why am I telling you all of this?
Well, it’s really to share the all-important lesson that sometimes you just have to let some things go. It took me a long time to learn this but I finally realized there was a better way.
Here’s why letting go is so critical:
You, as a parent, are your child’s #1 advocate. No one else can fill that role so you have to be at your best. This means you can’t do it all even if you want to. You can’t be exhausted and try to hold everything together yourself. No one wins when that happens.
Sometimes we get stuck in our ways and can’t see beyond. This can cause us to miss out on something better. As an example, bringing caregivers into our lives with new ideas and new ways of doing things has shown me a lot. We can all learn from each other.
So … the bottom line is this:
Letting go is hard. Holding on is harder.
If you haven't yet, download our coping fitness guide to help you to let go. Click the button below. It's free.
-- Mike --