Words by Alli Holland
In an attempt to forget that my 40th birthday was looming, my husband and I booked a trip to the US to escape. With every fibre of my being I wanted to take our son Asher with us. I wanted him to share in the magic of Disney, to show him Universal Studios, and for him to join us when catching up with good friends. But, sadly, Asher lives with a rare genetic condition, epilepsy, autism, a severe egg anaphylaxis, a portacath that requires regular flushing and is medically fragile. Asher always needs to be close to a paediatric hospital because he can crash quickly and go into septic shock.
Deciding to travel without our boy was agonizing, and a week before our departure I almost cancelled. But family and friends reminded us it was important to nurture ourselves as parents. It was 11 years since my husband and I had taken a trip together overseas, and in the years since we’d been through a lot. Everyone told us Asher would be fine and we’d return all the better for taking time out – and they were right.
Leaving Asher required detailed planning for every possibility. We consulted Asher’s paediatrician, complex-needs nurse, carer, grandparents, teacher and principal. We made medical notes, action plans and a book that listed everything about him. When booking the trip, we bought travel insurance that offered ‘cancel for any reason and return home’ cover in case we needed to rush home.
To prepare and help Asher with us being away, we made social stories about the trip. Asher’s medical team, family and friends were all on hand to make sure he had the best care, making the trip possible.
Knowing Asher was in good hands, we were able to take off on our holiday, but it felt weird and took time to shift gears. It was hard to get used to not being a carer, with no medication routine and no tube feeds. But once we gave ourselves permission to enjoy and make the most of this once-in-a-lifetime trip, it was magical; the stress began to melt away and we had an amazing time!
We chose Disneyland for its reputation for being the most magical place on Earth. After visiting when I was a teen, I’d always wanted to go back to share it with my husband. We’ve had a lot of sadness in our lives and it was just the place to put a bit of sparkle back and catch our breath. We returned home from our holiday with more energy and spark. We hadn’t realised how tired we were until we experienced relaxation.
While away, we kept in touch with Asher and his class by sending photos and talking to him on FaceTime. Asher, meanwhile, learnt how to wrap his grandparents around his cute little finger and was spoilt rotten. And, of course, we brought him loads of treasures from our trip, including videos we made for him, which he loved. We’re now planning a family holiday to the Sunshine Coast, where Asher will love cruising along the sand in a beach wheelchair with the sun on his face.
Our trip to the US as a couple was both the hardest and best thing we’ve ever done. We learnt that it’s okay to take time to replenish ourselves so we can continue the journey. It was good for the whole family.
This story first appeared in Travel Without Limits magazine. To subscribe to the magazine, click here.