We all know how tricky summer holidays can be when you have a child with a life-limiting condition.
Will we be able to cope?
Does the hotel have a nearby hospital?
Does it have a ceiling tracking and a hoist, a warm pool, wheelchair accessibility or blended food?
Can we cope with the feelings of vulnerability, worry, being out of our comfort zone and away from our usual medical facilities?
These are our key considerations because we have a nine-year-old daughter Tilly, who has Rett Syndrome, which is a rare neurological life-limiting condition which means she has 24-hour care needs.
Tilly, who has a ten-year-old sister Thea, is in a wheelchair, has an 83-degree curve in her spine, cannot use her hands, is tube fed a blended diet, cannot transition between postures, is non-verbal and has weak bones.
This means we are reluctant to travel too far from home.
So Jersey felt like a suitable compromise.
I met Tilly and Thea’s dad Rob, now my husband, in Jersey in 2007. He was a maths teacher at De La Salle and I was a journalist at the JEP.
We moved to Yorkshire in 2011, but Jersey holds a special place in our heart.
So when we heard about Maison Des Landes we thought it would be perfect for us.
And it was.
We packed up the van and drove to Poole, a ten hour journey which surprisingly didn’t feel too bad. And caught the DFDS ferry across with great passenger assistance, parking right next to the lift, which fortunately was working and a lot of support if we needed it.
The premier lounge was well worth it as they had a sofa which meant Tilly could get out of the wheelchair and stretch out.
When we got to Jersey, it was so straightforward to get to the hotel, nestled in the heart of St Ouen. And what a breath of fresh air it turned out to be.
Maison Des Landes has undergone a major refurbishment in 2023 and everything it does is geared towards accessibility and supporting people with complex needs.
From the space for wheelchairs, to the profiling bed, to the tracking and hoist, to the lowered tables for Tilly’s wheelchair to get underneath, it was a magical place to stay.
The scenery was stunning and the energy around the hotel was just joyful.
Being able to normalise 24-hour care needs by having all Tilly’s needs met in an adaptable hotel took the pressure off us as a family and meant Thea got the same attention and environment as Tilly, while feeling like a really friendly holiday environment.
To have our food blended to the exact consistency for Tilly through to accessing the hydrotherapy pool most days was game changing.
Tilly can’t regulate her own temperature and can’t go in the sea or in a normal pool, so the hydrotherapy pool was brilliant. Thea could take her floaty in and Tilly got essential physio with her dad. It helped her stay awake all day, which is hugely unusual but heartwarming for us.
Wet Wheels Jersey involves going out on an adapted boat with volunteer sailors to sail around the bay of Jersey with both girls getting the chance to steer the boat. Tilly said on her eye gaze the next day that she wanted to go out on the dinghy and in the ocean. I was amazed she could be wheeled up to sail the boat.
Beachability meant we could rent a specially adapted wheelchair to get on the beach. St Brelade’s beach was perfect and I could spend time on the sand with Tilly, while Thea and Rob went kayaking and swimming in the sea.
Seeing Thea grow as a person during the week was just lovely for us as parents because it felt like a family holiday that met all our needs. She usually has to watch as we spend a lot of energy ensuring Tilly, who is completely dependent on others for her care, has what she needs to stay well. Thea is an exceptional sibling, but to be able to accommodate her needs aswell as Tilly’s felt so good for us.
We went to the War Tunnels, really interactive and accessible and supportive.
Jersey Pearl where the girls chose their own pearl. Jersey Zoo to see the flamingos and gorillas and popping down to Healing Waves where Tilly stretched out in their amazing sensory room while on the water bed.
Tilly couldn’t surf because she must be in really warm water, as she is susceptible to pneumonia, but lying on the bed was just lovely and hearing about the work the charity does with children and adults with complex needs was inspirational.
Seeing the Island through the eyes of a mum with a child with complex needs was inspiring. It made me feel proud to know about what an incredible Island Jersey is for people with disabilities that can and do have a profound impact on them and their loved ones. But to see how accessible it is with Maison Des Landes as our base and second home, where we planned all our activities, was so special for us.
