That’s a question that I dread after having a child with
severe disabilities. I see pictures
people post of their families at the beach, stating how relaxing it was
chilling all day in the sand and surf, playing corn hole, riding bikes, boats,
water skiing, you name it. I can only
imagine how much different those families' lives are when they go on vacation as
compared to when my family goes on vacation.
Why do you ask? Well,
I still haven’t figured out how to get my son ON an airplane to reach a
destination. The few airlines I
contacted for flights to Orlando told me I would have to transfer Joseph out of
his wheelchair and into the plane seat.
After explaining that he cannot hold himself up and needs full support,
they explained to me that I could just buy 3 seats on the plane and lay him
down on the seats, that would be acceptable.
Acceptable to who?
The airlines that get the extra cash for the additional seats? Or my son who can’t lay flat because of his
severe gastro esophageal reflux? Why can’t
the airlines have wheelchair tie downs like buses and vans so he can stay in
his customized seating made for his wheelchair?
I know it’s because they would lose money on the seats around the tie
downs that they would have to remove to make this accommodation. The airlines also suggested I could bring
along a car seat and transfer my 63 pound son into that, and store his
wheelchair in the cargo area. That’s
another brilliant solution. Along with the cases of formula, syringes, tubes,
diapers and other supplies Joseph needs on a daily basis to survive, I’d also
have to tote along a 40 pound car seat with us.
Then once we get off the plane and to our destination, I have
to worry about finding a wheelchair accessible van to transport my family at
our location. I’m sure there are
companies that do provide such rentals, but what about all the luggage and
cargo we carry with us? Where does that
go? And then I have to have a vacation rental
that is wheelchair accessible….it goes on and on.
You might wonder why I have so much “stuff” to bring along
with us. Joseph is tube fed, which means
he has supplies to administer his meals that have to go along with us. He “eats” 4-8 ounce cans of Peptamen junior
per day, times X number of days, so that gets pretty bulky and heavy. Do I have to pay extra fees to bring that on
the plane with us? Probably. Then we have one 60 cc syringe per feeding to
actually get that food into his belly.
That takes up room. Diapers,
wipes, clothes, braces for his arms take up more room.
Joseph also needs to weight bear daily to promote bone
formation and to stretch his legs. To do
that we have to either bring a stander (not likely, its’ too big), or a gait
trainer (more likely, but still big).
Where does all this stuff go in addition to the normal clothes and beach
gear a family needs for vacation? Joseph
also needs a bath chair to sit in when he gets bathed. That’s not a light or small piece of
equipment either.
So you can see that planning a vacation on top of the normal
logistics is just a nightmare at times.
I haven’t even talked about all his medications that we need to bring
along with us. This is a big reason I
try to find places we can drive to in a few hours, or until last year, in a
day. But we are limited to how many
people can fit in our van because the wheelchair takes up so much room.
Those who can afford to go on family vacations are fortunate. Those who can go on vacations with a child
with severe disabilities are some pretty amazing and fortunate people in my
book.
