I dreamed of the travel we'd do as a family of 4. Then came my youngest daughter's life-altering diagnosis
We hadn't even checked in yet, and my 4-year-old daughter's hands were full of sweets. It took her less than a minute to discover the help-yourself candy bar near the check-in counter at Sydney's Ovolo Woolloommooloo hotel.
It was the first time my oldest daughter and I had traveled together as a duo since the birth of my second child. That trip was almost three years ago now, and we've made it a tradition. Although it's tough to say goodbye to my husband and baby girl, this one-on-one time has become essential.
Three years ago, at 8 months old, our youngest child was diagnosed with a rare neurogenetic condition called Angelman syndrome. This complex disorder primarily affects the nervous system and causes significant delays in almost all aspects of life.
It turned our lives upside down and most days now are a challenge. We find ourselves very time-constrained as she attends multiple therapies every week and deals with complex medical issues.
We live in suburban Sydney, and with so many therapies and appointments, I spend long chunks of the day in the car getting our little one from A to B (and often C, D, E, and F). Thankfully, we have supportive family members and friends who help from time to time with shuttling my eldest to her many activities.
New dreams and new plans
Although our original dreams have been shattered (most people with Angelman syndrome require lifelong care, and are not able to do things like go camping with friends, get a job, or find a partner), we've crafted new ones and continue to strive for the things we imagined we would do as a family.
The four of us still manage to travel together and visit the same locations as before D-Day — a nickname used within the special needs community for Diagnosis Day.
It's been demanding: Trips with all four of us include special gear like a safety bed and supportive seating. However, I believe that with love and support, children can navigate any situation with resilience and strength.
Back at the hotel in Sydney, sugar seemed to be the magic ingredient.
As I glanced around the lobby, I couldn't help marvel at the vibrant, eclectic décor — a stark contrast to our usual serene, minimalist home environment. My daughter, wide-eyed and grinning with excitement, darted back to the candy bar, like a spirit possessed. I whisked her away and upstairs to our room, where a make-your-own popcorn machine beckoned. An hour later, she'd convinced me that the next day would be a "Yes Day."
The answer to everything she asked for would be yes — while prioritizing safety. It ended up being a day of more sugar than I imagined possible, rides at the amusement park, and popcorn in bed while watching a movie. She still talks about this "Yes Day," and I know that we created a special memory.
Making memories and holiday traditions
As a travel writer, there are times when I'm given the chance to bring along a companion. In the past, this was typically my husband. More recently, I've been bringing along my eldest.
Recently, when my eldest was 6, I was sent on assignment to cover a cruise. The whole trip was six days long, with four spent on board the Celebrity Edge vessel. Although the trip was much longer than the previous vacations my daughter and I had taken together, it benefited the whole family.
While we were away, my mother-in-law spent the week with my husband and younger daughter. My eldest can head to her grandparents' place for a sleepover, but that's far too challenging with my youngest — so a staycation with her grandma was the perfect solution.
The joy of "Wants Nothing" time
The best bit about the cruise was not the shows, flashy restaurants, or the spa, but the opportunity to spend "Wants Nothing" time with my eldest. The notion of "Wants Nothing" time lies in the unstructured joy of being with your child, without preconceived notions or obligations. Our family has navigated through life-changing news, and amid all the chaos, we've forged something special.
We will continue this cherished holiday tradition without fail. But we're adding to it, too. My husband and eldest are going on a camping trip soon — it will be just the two of them and the great outdoors. He's also taking the little one to a farm stay, knowing the joy it will bring.
Meanwhile, I'm hunting for hotels with indoor splash pools for next year's getaway.
