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.
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
Oh the O. That makes my day. Wishing you the best this trip can be.
ReplyDeleteGood god. The boy made me cry.
ReplyDeleteYou know, my Sophie will never be able to travel by air because they do not allow the wheelchairs on the plane and my gal cannot sit without the insert. It is a well known fact, too, that airlines destroy wheelchairs in the cargo holds and are generally hostile to wheelchair users.
DeleteEvery day I fall a little more in love with Oliver. And I know that his life is not the easiest nor does he rest as easy on this magnificent planet as some but I think that he is going to change the world someday with his Oliver heart and his Oliver mind and the way he has been raised with his sister Sophie.
ReplyDeleteOliver is truly one of the most charming people I have ever known. Truly. So please don't tell him that Delta is, for the most part, only barely tolerant of people with disabilities who travel. Instead, let's work on somebody with a private plane who can make this right!
ReplyDeleteOh wow.....just oh wow
ReplyDeleteIt could be written by any number of siblings who would love to go on a holiday with their entire family. We've not been on an airplane in 5 years with Max. We also do the split time vacations, and it's always a hard thing to not be a whole family.
ReplyDeleteI found this concept airline a few years ago. http://www.iflymat.org/ They have such a vision, such a fantastic idea...yet no funding to make it work. I check back periodically to see if we can go as a family to the ocean again, or even to go visit family two states away.
Oliver is also 'magnifsent'!
ReplyDeleteGlad you've found a way to attend the family reunion without sacrificing your sanity. I remember last year's reunion posts, the desperate tone and your fatigue. Life is too short.
What Mary said. Every word.
ReplyDeleteLove, love, sweet boy.
ReplyDeleteOh...oh my heart.
ReplyDeleteElizabeth, I rarely comment on your blog posts as I know you are not fond of anonymous posters but I can't hold back the emotion I feel towards the incredible heart and soul displayed by Oliver's letter to Delta on behalf of Sophie and others. He is one incredible being. And my heart goes out to you and your family for what you endure in such dignified and grace-filled manner. Sweet Jo
ReplyDeleteOh, Sweet Jo. You are never Anonymous! You're Sweet Jo!
DeleteThank you Elizabeth. I will feel better about being able to comment from time to time. Sweet Jo
DeleteWhat a great letter! "Magnifsent," even. I hope it gets someone at Delta thinking.
ReplyDeleteHe is a sweet, thoughtful young man. I gave up trying to take Katie on holidays when she was fourteen I think, maybe even younger. We even took an aide with us, a young woman who had been with us for a few years but it was just fucking hard. I hope I can give my grandchildren the kind of holidays I had hoped to give my children but never could, a month at the lake or hiking in the mountains. Get some rest and enjoy your family.
ReplyDeleteThat made cry. Maybe hit me especially hard because we just arrived home last night from our annual family vacation - one that I rely on to refocus and refresh myself for the year ahead. It pains me to think that the families that most need such a vacation are probably the ones least likely to receive it.
ReplyDeleteOh Oliver. You've got some remarkable boys, Elizabeth.
ReplyDeleteGood God, that boy! I am absolutely sobbing at the tenderness and reality of it all. It puts me in mind of a book I reviewed by a girl in So.Cal with cystic fibrosis who created a foundation specifically to help families of kids with CF be able to travel easier with their myriad medications and devices and special needs. I know beyond the shadow of a doubt that your boys will make this world a better place with their honesty and empathy and cleverness.
ReplyDeleteLove and journey mercies.
Well, that's just the most inspiring and beautiful piece of writing I've read all year. Thank you, Oliver. And thank you, Elizabeth, for sharing him with us. What a masterpiece of a boy. Both of them are.
ReplyDeleteThat's a killer letter. It's so tender that he wants his whole family together. I am completely with you that it's best to divide and conquer, however, that's how we always do it, too.
ReplyDeleteThat is a FINE letter. And your son? I have no words.
ReplyDeleteYou know I love tht letter. You have raised a very fine human in that boy. His idea is not just brilliant - it is kind and compassionate. Kiss him for me.
ReplyDelete