Our 3rd holiday abroad since Amélie’s birth 12 years ago is sadly over. I always say ‘never again’ on return, not because it wasn’t fabulous and fun, but the work buildup and pre medical preparation is stressful, challenging and equally exhausting. I’m sure most parents of children with disability would resonate with this summary !
For example; obtaining your fit to fly letter, medicines, the expense of hiring the oxygen converter that she requires to fly in and for during overnight sleep. The countless insurance quotes, all of which were unrealistic and extortionate and the medical equipment and spare machines required takes some military planning.
Once there the time spent with all her family is the main reasons why it’s so very much needed. The memories to treasure and also to enable Amélie to explore her social interactions, proprioception and sensory needs, just like her sisters have during their younger years, is essential and of course it’s all about her ability, lived experiences and inclusion too.
I also live with some sun worshipping kids and husband. Darren definitely misses his sunshine holidays and these are proving beneficial for his arthritis too. This next picture is Amélie’s eldest sister and Children’s Nurse Gabrielle, who is a great help with the medical needs of Amélie while away. Although all 3 sisters play a huge role in her cares, play, fun, medical and personal hygiene needs to support Darren and I.
Darren and I find the down side to being abroad is the pure lack of sleep, as we share a bedroom with Amélie and as such the machines alarming is much louder and disrupting all in the same room. Amélie has over the years acquired mini sleep partying during the night time and there are risks to her safety as she wanders between 2-5am. At home she’s safe in her own visual environment to a degree.
Although this years holiday clearly had some challenges for her with her absent semi-circular canals and balance issues and as such the leg and thigh bruises were vast. Amélie negotiates her sensory impairments and balance issues far better in her own home and the furniture is never moved for this very reason.
The airport, medical equipment and all that goes in to travelling with a disability was also a challenge. The assistance for disability support was great at Manchester airport, but less so at the receiving airport. And getting on and off the plane wasn’t the easiest and she doesn’t tolerate crowds or queues, so endless apologies on her behalf take their toll as do people’s ignorance.
Amélie had 5 suitcases of luggage just for her, if taking into account the gastrostomy feeding, two of each machine- spare for machine failure, converter batteries bag for the oxygen converter, suction and converter itself, nappies and gastrostomy tube feeds for the week also bulk this up.
The other stress is no nappy care changing facilities on the plane, this can’t be achieved in a cabin loo !! so no options to change her nappy if required. I know so many parents in the disability arena will totally grasp this worry in all public places. A major reason why we don’t often go out in public now as changing a 12 year olds nappy is virtually impossible in most places. This does always give me huge anxiety going out and during flights.
The return flight was the usual battle of the wills about her luggage allowance, for medical luggage and on all 3 trips this has been questioned and challenging. Flight companies do not provide letters or record on their systems with the disability allowance for the return flights. Nowhere was it recorded of her allowance despite being reassured back in the U.K. I’ve no idea why and we’ve raised this numerous times and been reassured. Unfortunately, every trip has been the same and being asked to pay for the excess luggage is unacceptable, when it’s already far more expensive to travel abroad with a child with a disability. That’s my next mama letter and mission for disability I think !!!
So why bother after all the above … well it’s simple, observing her excitement and gorgeous quirky face, her sisters love of entertaining her and all the precious family time together in the sunshine leaves us all feeling wonderful … I think the pictures say it all !