Tuesday, April 28, 2009
Reading-- Fablehaven: Secrets of the Dragon Sanctuary by Brandon Mull
Listening to-- nothing
As I mentioned in a recent entry, I returned last Friday from Boise, after attending three days of meetings for my state's Council on Developmental Disabilities. On that last day (Friday) a parent, whose daughter was born with multiple disabilities, gave a presentation on Cytomegalovirus or CMV, which caused her young child's disabilities. She began her presentation with this short essay or poem:
I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
But it's the essay by Emily Perl Kinglsey that captured the bulk of my attention and kept it. During a lull in the meeting I went back and reread it more thoroughly. It's a very good analogy in my opinion, and puts a mostly positive spin on the unique challenges of raising a child with a developmental disability or one with multiple disabilities. However, one part in this essay bothered me: the paragraphs where Ms. Perl Kingsley said, "But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.'
"And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss."
That last paragrah above bothers me the most, because most couples can have more than one child, or "go on more than one trip." In my opinion, they can "go to Italy." Holland may be where they "reside" most of the time, but they can take "trips to Italy" now and then. So, really, the loss of that dream--not going to Italy--is utter bull!
I realize I probably am reacting a bit strongly to this essay, and may be making more of it than is needed, but after reading "Welcome To Holland" I wanted to speak up and share my own opinion. I spoke with my friend Emma in England about this as well. She pointed out this essay was written to illustrate a parent's grief when first learning that their child had a disability or disabilities. I was reminded of how my own mother felt when she was told I had Cerebral Palsy (C.P.). She was devastated and somehow felt it was her fault. That was the pain Emily Perl Kingsley wrote about. And, if I pause and think about it, Mom still carries the pain with her. It's lessened over the years, but she still wishes, from time to time, that things could've been different. That I could walk and have total independence. So in that respect, I can now see what the author meant about the pain never going away. But I still say the pain of not having "landed in Italy" that one time doesn't mean you're forever denied that trip! While Mom may carry the pain, she would also agree that life hasn't been as bad as she feared and was told it might be. She also had four more kids or "trips to Italy" after me.
Also in discussing my feelings on this subject with Emma, she agreed with me and pointed out, again, a different way people could "visit Italy." Though disabled, we can do many things that able-bodied people do, like go bowling for instance. We may not be able to stand and bend to throw the ball down the lane, but we have helpful devices, like a ramp stand for the ball, that we use to help send the ball down the lane into the pocket. And I know two self-advocates on the Council that have skydived before. They go down with buddies who can operate the parachutes and lands them both safely on the ground. In essence, this could be a "visit to Italy."
"It may not be Rome, with all its attractions, but Naples instead," Emma said. "You're still in Italy, so you're getting the culture and flavor and a few of the sights of Italy, but not necessarily the most well-known."
This is true, and I liked how she put it. This means I, as a person with a disability, get to "visit Italy" myself from time to time even though I "reside in Holland." She said the reverse is true too. That those in "Italy" visit "Holland" from time to time. For example, when someone breaks a leg he or she is in a wheelchair then on crutches for a time. Or as one gets older, a person may lose his or her sight or hearing a bit. They may also lose their ability to move around as well as they used to. These people are "visiting Holland" or are residents now.
Life is unexpected and we may not end up in the place we wanted to be, but that doesn't mean we have to be stuck forevermore in an alternate place. We can visit the destination we always dreamed of visiting.
Written for B.A.D.D.
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