I honestly believe that we all feel pain differently, handle problems differently, that what might bring me to my limit may be easy for you. When my friends with normal kids realize that they are complaining to me about things their kids are doing that I wish Pearlsky could do, they get all apologetic and freaked out. I explain that those are big things to them and I understand the perspective and have no problem with it. Just because Pearlsky and David are more [severe]/[messed up]/[disabled] (pick one) than your kid, does not necessarily mean my life is tougher than yours or yours is easier than mine. We all have our limits, talents, and our own shit.
We got some medical news today on Pearlsky that I am having a lot of trouble dealing with, something some of you easily deal with daily. When I wrap my head around it, I’ll post more on it. She will be okay.
A metaphor is often an analogy between two things.
An analogy draws a comparison in order to show a similarity in some respect.
An essay is usually a short piece of writing which is quite often written from an author’s personal point of view.
Hence, a metaphoric essay is a short piece of writing which draws a comparison between two things that share some similarity.
It is said that Welcome to Holland is a metaphoric essay. It is often given to parents when they become the lucky parents of a disabled child. Even though the author’s child has Down Syndrome, he has acted professionally, co-wrote song lyrics and co-wrote a book. The essay is his mother’s analogy to raising a child with special needs.
To share this essay with the parents of a severely disabled child is misplaced. There are two issues here. One is that her child, while disabled, is extremely high functioning. The other issue, is that the author just does not have a clue, in my humble opinion.
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy.
Wow, really? Unless you are a contestant for I Didn’t Know I Was Pregnant, (a real and bizarre show), you are telling me that planning for a baby takes a week or two of part-time thinking? There is a similarity? That is how serious you take bringing a child into the world? Glad you ain’t my mother.
You buy a bunch of guide books and make your wonderful plans.
Right, just like planning a vacation. Yep.
The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian.
Some of us think about schools, neighborhoods, major roads abutting our yards, crime, resources, and family. Not learning how to babble.
It’s all very exciting. After several 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!”
In reality, several hours later, the baby is born. The doctor comes in and says, “We rushed your baby to the NICU, the neonatal intensive care unit. We are not sure she will survive.” Yep, good analogy.
“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.”
“NICU, what do you mean intensive care? The ultrasounds and amnio were normal. What is happening to my baby? Why is she not in the nursery? My baby is normal, she must be normal.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
No, for you there is a change. Your kid is starting a life that you cannot fathom, and you are stuck with this forever. Yep, intensive care … Holland … intensive care … Holland … hmmm, yeah, fairly equal.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
The important thing is that they have taken your kid to a place to be hooked up to life support, spending all day in a clear plastic box, hanging on to life. It’s not the nursery, it’s just a different place.
So, you must go out and buy new guidebooks.
Now you surf Amazon and buy “Surviving Pregnancy Loss” and read the Book of Job.
And you must learn a whole new language.
Amino acids, anoxia, aspiration, atrophy, cerebellum, asthenia, ataxia, clonus, demyelination, edema, encephalitis, etiology, oligodendrocyte cells, cortical visual blindness, hypoxia, myelin, spasticity, hypertonic, hypotonic, visual evoked potential, aphasia, IEP, NICU, infantile spasms, …
And you will meet a whole new group of people you would never have met.
And you get to meet radiologists, neurologists, metabolism specialists, geneticists, endocrinologists, gastroenterologists, physiatrists, social workers, school nurses, department of public protection investigators, Ken, etc.
It’s just a different place.
To paraphrase Dorothy … There’s no place like hell.
It’s slower paced than Italy, less flashy than Italy.
It’s not nursery school, but they do put Disney characters on the wall and wear child friendly scrubs.
But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.
After you’ve been to the hospital, ER, and clinics a few dozen times, you start to look around. You find the Starbucks across the street. The hospital has wifi. Some of the nurses are cute. The doctors call you “ma’am” or “sir” and are all younger than you.
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.”
All your friends have normal kids. The other kids in school are normal or much higher functioning than yours. The other parents tell you of milestones reached. And for the rest of your life you will say “Why my kid? What went wrong? Why?”
And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.
So now, Ms. Kingsley, you are comparing the pain of having a Down Syndrome kid who acts on T.V., writes songs and books, and analogizing that to going to Holland instead of Italy AND you talk of pain that will “never, ever, ever, go away.” Now you’re starting to piss me off. Yes, we all experience pain differently, have different limits as I started this post saying, but come on. Not a single moment of no pain from having a kid that has starred on a T.V. show? A kid that exceeded your wildest dreams in the beginning?
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.
I guess you wrap up with “man up,” get a life, enjoy what you have since it ain’t so bad.
This is not a story to share with anyone with a severely disabled child. First, the analogy makes no sense. Second, the author does not have a clue. Third, there is nothing helpful here.
There is NO analogy to holding your child during a prolonged and uncontrolled seizure. Period. If you have never done it there is NO way to describe it.
There is NO analogy to being told your child will probably not get out of the NICU alive. Period.
There is NO analogy to having a severely disabled child without a diagnosis. No analogy for that pain. Period.
Just get ready to rise to the occasion. And as my mom says, “Yes, you do have a choice. You can do it well, or you can fuck it up.”
Maybe one of these days I’ll post my version …
Welcome, Right This Way a metaphoric essay as told by Cerberus
and if I hear from Emily Perl Kingsley, I’ll post her response!