
As I ready myself to join the boys and the rest of my family -- my sisters and their husbands, the cousins, the nieces, the nephews, my parents, etc. -- for our annual trek to South Carolina at my parents' house in Hilton Head, I am reminded of the letter that Oliver wrote earlier in the spring. I used to take Sophie to this "vacation" (and I put the word in quotes because it's so NOT a vacation) every year -- did so for a decade -- but it was like going to hell on earth.
At best, I called it my life in a different location, a location with none of the accommodations and routines that we rely upon to stay sane.
At worst, it was four scary plane rides, the expectation that I would have to change a diaper in the airplane bathroom, endure the looks and stares of countless people as Sophie hummed, agitated, a week of no sleep, grotesque humidity, Sophie's seizures, Sophie's accidents (she split her head open, cracked a tooth, fell a number of times with minor head injuries), my own resentment that everyone's life went on as normal while mine did not, and sheer loss and sorrow, magnified a million times over as only proximity to extended family can provoke.
Don't call me dramatic.
I now go to Hilton Head and join my boys and family for a shorter period of time and leave Sophie at home with her father. It's better all around, an easier loss to bear, at least for me. What I didn't expect -- or failed to realize -- is the effect of all of this on my boys and their desire to travel -- together -- as a family, including Sophie. We often overlook the profound impact of disability on siblings, the ongoing impacts -- both seen and unseen. When Oliver's teacher sent me a copy of the following letter, it hit me like a sledgehammer -- but not hard enough to make me change our plans and drag Sophie back east, again.
However, if Delta would kindly reply to this letter from Oliver, we might possibly venture back east again as a family.
Dear Delta,
Hi my name is Oliver and I am in the 6th grade. I am 12 years old and I have 2 siblings. One of them is my brother Henry who is 14 years old and in 8th grade and my sister Sophie who is 18 and is severely disabled and has seizures almost every day. Me and my family love to go on vacations but we have to leave Sophie behind. It's not like we don’t want to bring her it's because the plane rides are just not right for her. There is not enough room for her to spread her legs and the hard surfaces are bad because she will hit her head on them and I think you know the rest of that story. So I have been thinking for a long time about making a handicap accessible plane for people like my sister and for people that are elder or have some kind of a disability. I love delta airlines but I think that this would be a huge jump for your company. I am not doing this to be famous or be rich I am doing this for people like my sister and how they might never get to experience or go anywhere on this magnifsent planet that we call earth so pleas delta pleas make this dream of mine come true. Sencerly, Oliver.B