Travel is something that currently doesn’t really exist for William, but it does exist for the rest of us. We don’t travel a lot and I wouldn’t call our travel “vacation.” Our travel is limited to travelling for work and travelling for the girls’ sports. When William was small, we did take him on holiday but as his needs grew more demanding and he got bigger, travelling has become very difficult for him and us. Travelling is exhausting for William and the necessary supports he has at home are impossible to provide on the road.

Just getting on a plane is near impossible. He can’t sit in a regular seat, he isn’t comfortable in a seat for any length of time, he requires his stomach to be vented every half an hour (at least) and he requires diaper changes regularly – where does a 10 year old boy lay down on a plane? So the logistics are considerable before we even arrive at any destination.

Over the last couple of years there have been several occasions where my girls have had the opportunity to travel with sports teams and my husband has had opportunities/obligations to travel for work. When these opportunities arise I instantly feel dread.

I dread being left alone, I dread missing out and I dread the idea of leaving William behind if it were even an option for me to go too. There is also a lot of guilt that comes with, “I’d like to go too.”

Bear and I have made the occasional trip work but we have also missed out on many opportunities because it simply didn’t work to leave William at home for a million different reasons.

At dinner the other evening, Bear raised a couple of work conferences that would require a few days of travel. The dates went in my calendar and I sat quietly for the rest of dinner. My mind was sifting through all the logistics to accommodate that travel while trying not to focus on my deep feelings of wanting to go with him.

After building the perfect plan to accommodate Bear being away, I started to think about how I could possibly go with him. I chatted with William’s care team, my mom and dad and the girls and pretty quickly I had a plan B. After working out the kinks, Bear booked the flights and I’m going too.

Queue the guilt though.

Me going too isn’t simple and it requires me to think of every detail in advance and prepare everyone for the time I’ll be away. I do feel incredibly fortunate to have parents who will stay at the house and look after the girls. It’s amazing that we currently have a care team for William who are willing to shift schedules around to add overnights and additional responsibilities. But it’s still a lot to ask of people and the reality is that we will always have to ask for support with William if we want to go away for a couple days.

Queue in that feeling of owing people for helping us.

Although I’m well aware that the people we select to be in William’s life are more than happy to help us have a break, or be away for a few days, or go out for a later evening, or be there to support our girls at their events, it still feels like a big ask – I’m putting a huge amount of responsibility on people and that weighs on me heavily.

Even with the guilt, the feelings of owing people, the worry, the dread, the sadness, the anger and the disappointment of leaving William at home, I know that Bear and I need time to re-charge so that we can maintain a healthy relationship and be at our best for our children. I’m learning to give myself a little bit of grace but man it’s hard – challenge accepted.

~ 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.