Written by Julie Jones, Have Wheelchair Will Travel, May 5, 2025
I have always had an aim with Have Wheelchair Will Travel to share positive can-do travel experience and our day-to-day experiences in trying to give Braeden a full life. It’s important to me to share more than the highlight reel. I want to keep my posts honest, while still maintaining everyone’s privacy and dignity, so people reading our Facebook posts and our reviews do not think it’s all sunshine and roses. We are fortunate in many ways and certainly have incredible experiences BUT we also struggle daily.
Keeping a sense of self as a carer
Caring for Braeden and my parents has many ups and downs. I’ve previously shared my thoughts on the onerous amount of daily admin carers deal with and the terrible carer’s guilt I often feel. I’m here to remind you, our family is just like many others in the caring space. Recently I was looking at a photo of me smiling broadly at a tourism event. I had such a fun night but what the photo doesn’t show is the incredible effort it took to get myself to get there.
The invitation arrived for a Gatsby themed event to celebrate New York State. It was to be held mid-week in the city. I was excited as I love all things Gatsby and really like the Aussie team who represent New York State. I looked on the family calendar and realised Hubby was flying back from interstate on the evening of the event and wouldn’t be home in time to take over Braeden’s care. Undeterred, I asked his support workers if they could take Braeden out so I could attend but unfortunately, they all had plans and couldn’t do it. Amelia, seeing my disappointment, offered to take Braeden to the movies.
On the afternoon of the event, I had Braeden come home early so I could give him a bath and some dinner before he went out with Amelia. I also sorted my mum early for the evening with her dinner. After getting everyone else sorted, I had a short amount of time to get myself dressed and to the station to catch the train into the city. As I exhaled on the train, I hoped all the effort would be worthwhile and that I looked more put together than I felt. At that point I was thinking it would have been much easier to decline the invitation and stay at home.
I had an absolute blast during the evening and felt energised from being with people I enjoy spending time with. It also felt like I was living a ‘normal’ life. Other families we know who have grown children don’t need to think twice about accepting an invitation to an event. It was good to have made it work but no one at the event or those seeing the photos of a smiling me would have any idea of the logistics it took to get there.
Similarly, last weekend I headed to Queensland for a work-related trip. I was ready for a break from day-to-day life, and I was really looking forward to getting away, but again, there was much to organise. I was offered a week’s trip but due to our home life I could only accept two nights of the trip, which still felt like a win as it is so hard to get away. Before accepting the trip, I needed to ensure Braeden would be able to attend respite (cue guilt), that Hubby was confident in doing what my mother needed doing for the weekend and that my shortened stay would be okay with the organisers of the weekend. There were lists for Hubby and food prepared. It was only at the last minute that I organised my own bag. While away there were calls to check in and make sure all was okay so although I tuned into what I was doing, I always had a little corner of my mind at home.
On both occasions, I felt a real sense of accomplishment at managing to do something for myself. Although work-related, keeping up with reviews and blogs on Have Wheelchair Will Travel and with the work at Travel Without Limits fulfils me. It is a huge juggle, but it feels good to do something I enjoy and it’s even more rewarding if keeping it all going helps others.
Why am I writing this?
Certainly not for sympathy. I know many of you have far greater challenges and many of you don’t ever have the opportunity to take a step away from your caring role. This is just to tell you that glossy photos don’t tell the full story. Like many of you, I am fighting to keep a little piece of me while caring lovingly and wholeheartedly for my family members who need me.
PS. It’s day one of being back home and I won’t even get started on how quickly my little travel bubble has been popped this morning with multiple phone calls and drama! That’s the life of someone caring for a loved one with a disability. Every day has a new challenge but I will keep fighting.