With a child graduating this year, I overhear many conversations about parents becoming empty nesters. These conversations start with a sad, reminiscing tone but usually end with all the things they plan to do to fill up their soon-to-be extra time. There’s often comments about how they will visit their children or how they will spend the holidays.

I’m not sure if the extra time ever really comes for any parents but overhearing these conversations makes me contemplate my reality. Bear and I will never be empty nesters.

This reality is comforting to some extent but also comes with some sadness and uncertainty. There won’t be a time when we can just plan a holiday and go without considering a plan for William. There will never be a day when we aren’t constrained by caregiver shift times and William’s schedule. There will never be a time when we downsize our home and the workload that comes with it. Our home will never be quiet; there will never be a relaxed morning coffee without anyone around, and there will always be worry while we sleep.

Contemplating the idea of an empty nest quickly takes my mind to other things that are hard to confront. Questions like:

What will happen to William when Josh and I are gone?

Will we outlive William?

Will his sisters feel obligated to oversee or provide care for William?

Who will make sure he gets what he needs?

Who will make sure he’s never alone?

Will I remain physically able to care for William? And if not, what then?

There are so many other things that I consider as I look ahead. This is a topic I have a hard time facing so I usually let the thoughts in briefly and quickly move along so that I don’t dwell or become paralyzed by how overwhelmed it all makes me feel.

One of the most overwhelming and destructive feelings is jealousy.

We’ve all felt it and nothing good comes from it – at least in my opinion. With that in mind, I try not to compare my life to others’, and

I focus on how Bear and I can make the most of our reality – challenge accepted.

I accept this challenge but it’s not an easy one.

We take it one day at a time.

Our reality is that our best plans often get fucked up.

We take care of our health. Our reality is that we need to care for William as long as possible. We try to have a back-up plan when possible. We make the most of necessary trips to trick ourselves into believing they are holidays. We focus on all the great things about our life so there is limited time to focus on the struggles.

I don’t have all the answers and to be honest, I’m not even sure I know what I want the answers to be.

~ 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.