Poppy and Haley

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Welcome to Holland

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Editor’s Note: I came across this wonderful piece of writing in the playroom on the 10th floor of Boston Childen’s in 2010. Many parents of special children have seen it before. It is a delightful story about having a special child.

 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 that 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.

Haley and Poppy.com Our First Post Mon 10/18/10

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Introduction

Haley010409[1]

She is three. I am 68.

I get up around 5:30 AM each day so I can have that first cup of coffee and read the paper before she comes at 6:30. Except for occasional days when her Mom has holidays off she is with me till 3:15 PM and has been so for over three years. And she has transformed my life.
When I was young and dreamed dreams, I thought of success, riches, travel, and adventure. My dreams were of happiness around the corners of life. Now as round the last decades of my life, I can truly say this little Imp has given me the biggest surprise of all. It is a happiness and contentment beyond those early dreams.

But this is a not a tale as simple as retired man approaching seventy and his beautiful granddaughter. Yes, she is beautiful and tenacious, but she is severely handicapped, and may never walk or talk. That’s right, she will never be the athlete zipping the softball from the mound nor will she be president of her college class. Yet, she has transformed all around her. I get to see her not only through the eyes of her loved ones, but through the eyes of her therapists and doctors and it was through their eyes I first saw the imp. To put it simply she makes them laugh. She makes me laugh all day long.
But the strangest thing of all is that for all my efforts at trying to discern how she does this, I cannot see it clearly. So the way I figure it, if I blither long enough, throw enough words up, sooner or later a few goods ones will stick and I will know.
I do know with great clarity that at my age my ability to attend to her is far beyond what it might have been when I was in my early years. At my age, struggles of polishing off your own identity, collaborating with a young wife doing likewise, chasing a career, and charming bosses and clients have faded into the past. My focus yesterday, today and tomorrow, is her coming and going each day.

The Balkans-A Zest for Life-A Beautiful Child

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logo-fbEarly in twentieth century the Balkan Peninsula was subdivided into a number of countries; and so was born the term Balkanized. The term has come to be used when things are piecemealed into small and often competing units.

I think some day when the genome gets read for the price of good meal, your doctor  may say I don’t have the time to talk to you about all your missense, nonsense, alterations, inversions, deletions and copy variants. As one scientist said we will soon have cheap scan with a million dollar consult. But you will say that I have an autism spectrum disorder (fill in a blank) and the doc will say: “yes, but the last 25 patients walking out of here had that label too, but all had a different variant and we have to treat each one differently”. We may be on our way to being Balkanized, in a diagnostic way, if you will.

This was a week of frustrating research and writers block. But something beautiful did happen, Haley played hooky from school and I got to have her for the whole day. She fell asleep about mid afternoon before mom came to get her and I stole some time holding her while she napped. I kept staring at this girl and wishing I could see a cure for CDK5 mutation. I realized that this was the next part of the journey and a frustrating one, not only for me, but all of us. Haley was four at the time, relatively healthy, strong and thriving, at least, since June when we got control of the tonic clonic seizures. During this time I cruised the web looking at research, even took in lecture at the College of Nanoscale Science and Engineering of the University at Albany. It was a fascinating lecture on bio-engineering. I did it because I hate being helpless. I hold this beautiful child and wish I had a fortune to give away to fund a cure. But reality gets in the way, that’s not the way it happens. If that were so, Bill and Melinda Gates would have bought a cure for something. As it is, they seem to be trying to put their money to places where it makes differences now.

What you find when you really dig into the research, is that an enormous amount of exciting things are happening, but the complexity is daunting. It is happening because of the enormous impact of neurodegenerative disorders The University of Pittsburgh, Neurology Department puts it this way:

It is estimated that approximately one in four Americans will suffer from a neurodegenerative disease, and virtually all Americans will have a family member with one of these conditions. Unfortunately, the underlying mechanisms of neurodegeneration—and how they lead to disease—are not well understood. The complexity of these diseases makes it impossible for any single scientist to find the cause or cure. Instead, it will require an integrated, collaborative, interdisciplinary approach—involving interactive groups of scientists and clinicians. http://www.neurology.upmc.edu/pind/

Those of us who deal with these beautiful children, learn that they are ready willing and able to move ahead in their lives if we can just remove the roadblocks. We also know that they are our equal in their zest for life. And that zest we share is a most beautiful gift.

Ed Fennel

Grandfather to Two Rare Disorder Granddaughters

The Test of Our Progress

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“The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough for those who have little.” — Franklin D. Roosevelt

No lesson have I learned so clearly as this one. However, it was not learned from FDR, it was learned from my granddaughter, a child of 8 with a disorder that has stolen her speech, her mobility, her ability to care for herself. Yet she refuses to let it steal her mind. If you are patient and lean close you can hear her. We know for certain she hears us. And for certain her teachers hear her. Why just the other day she told (computer assisted) school staff that the braces used for standing hurt her feet. Lean in close to your brothers and sisters like Haley – they are there, just like everyone else, needing the same thing we all need: recognition that we are here and share the same needs.

Ed Fennell
Poppy to Two Rare Disorder Children