There was a time in my life when I never dreamed it to be possible that we’d ever be able to take a family trip or vacation.
We had never traveled more than 40 miles in any direction for the first five years of our child’s life.
The idea of traveling with a severely disabled child felt inconceivable.
Our life included things like hospital beds, a wide collection of adaptive equipment such as standers, gait trainers, wheelchairs, feeding chairs and various wheelchairs and specialized seating and the need to blend three meals a day because our child was able to eat orally but not solid foods.
It wasn’t until I was really forced into a big decision that I started to contemplate whether there was any potential for ever leaving the boundaries and comforts of our home.
A once in a lifetime opportunity to not only travel, but travel out of the country.
A dream that had long lived inside my soul long before I ever had children.
A dream I still felt possible even knowing I’d marry and have a family – until life’s unexpected special needs journey derailed all my dreams and hopes for the future.
I, like many parents in my position, came up with a million and one reasons why it’d never work; no hospital bed in a hotel room, no blender to puree meals, no feasible way to get on an airplane and through an airport with a wheelchair and all the bags of medical supplies needed to tag along with us, no adequate disabled transportation.
But when all of my concerns and apprehensions were spoken out loud and one by one they all were properly addressed as we were contemplating this trip, something in me felt reassured that I could take a giant leap of faith and we could do this.
It certainly requires more coordination and planning than would be required if you did not have a child with special needs.
However, taking a family vacation can be done with a little bit of effort.
Taking vacations is essential for the special needs family.
We’re running to appointments; doctors and therapists, rehabilitations specialists, orthotics, and in many cases dealing with outside respite care providers, teachers and school systems.
Countless emails and phone messages call our name as we advocate and battle for services to help our child.
SSI, Medicaid and secondary insurance companies all itching to put us on perpetual hold to keep us from barking up their trees on the most recent denials of therapy, equipment and medical necessities for our children.
If we haven’t pulled our hair out by the end of each day, we’re either ready for the biggest glass of wine you could put in front of us, or a good cry into our pillows – and neither of that we even have time for.
And our children equally working as hard as they can for hours at a time at therapy to accomplish the smallest of tasks, exhausted from their days of having to work twice as hard as their typical peers do.
The physical and mental demands that are often placed on them can be exhausting too.
We all sometimes need to just walk away from it all and take a break.
Taking a moment to not have to respond to an email about your child’s recent sensory clothing denial, or return a call to the nutritionist who wants to tell you they just discontinued your child’s favorite supplement drink.
Or to give your child a break from working so incredibly hard day after day to take three independent steps in his or her new gait trainer.
And while we’re on this amazing vacation and regrouping from all that stress and life’s daily challenges, we in turn trading that stress for building incredibly beautiful memories that we get the privilege of bringing back with us so we can continue to face all that we have to face together as a family.
It doesn’t even matter where your vacation destination is.
You could go big and take a tropical vacation to the beach, or go so small and plan to see something you’ve never seen in your home State that just requires a night or two away from home.
Enjoy that vacation that is so deserved and needed.
Follow that trail of happiness and joy – it’s out there just waiting for you to experience it.
Do you 'baby wear' your disabled child?