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Thousand Word Thursday: “Welcome to Holland”

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.

c1987 by Emily Perl Kingsley. All rights reserved

Cheaper Than Therapy

Through the eyes of a child

Helen Keller once said, “The best and most beautiful things in the world cannot be seen or even touched; they must be felt in the heart.”

When I close my eyes I can remember February 6, 1992 like it was yesterday. It was the day my life changed; it was the day my little sister Hadley came into the world.

For a month prior to this anticipated day my mother had been bedridden in the hospital because she was having her second difficult pregnancy which was complicated by Toxemia/Preeclampsia. Everyday the doctors would discuss whether this was going to be the “big day”; the day I would become a “big sister.” What I didn’t understand was that this was about a month before she was supposed to be born so there were pretty good odds that there would be some complications. But my parents knew and understood this since they had already traveled down this road 3 years earlier when I was born under the same “not so great conditions”.

The morning that my mom was going to deliver Hadley everyone was at the hospital. I sat there with my grandparents awaiting the arrival of our new “bundle of joy.” At noon a nurse walked out of the delivery room carrying a little baby past us. My grandma was surprised and asked if this could possibly be our baby. It was indeed my little sister Hadley, and I know that everyone was relieved and happy that she appeared to be small yet healthy.

I was excited on Valentine’s Day when my mom came home from the hospital, but surprised and sad that my new sister Hadley had to stay because she was so small. The doctors wanted to make sure she was gaining the appropriate amount of weight and said that when she looked robust enough they would let her come home. Presidents’ Day weekend things took a sudden turn for the worse. Hadley suffered an intracranial hemorrhage which left her with what we thought was a seizure disorder. I was three years old and my family’s life was changed forever. My parents were devastated! They visited Hadley everyday at the hospital and finally on March 1, 1992 Hadley was released from the hospital and came home.

I could not know or understand the draconian changes of life that had been visited upon my family. I had seen so many friends have new younger brothers and sisters but they just seemed to come home a few days after they were born and then they were there, eating, sleeping, and crying. That’s what we all expected. But our baby came home with a monitor attached to her and she had to take medicine every 4 hours. To the 3 year old new older sister, all of this was very different than expected and very scary. Why couldn’t Hadley be like everyone else’s new baby?

If Hadley didn’t take her medicine she would have frightening seizures. And it was very clear that the medicine tasted bad as she always spit it out. My parents tried to hide her medicine in her formula which made it a funny pink color that looked just gross to me and from the way Hadley took it sometimes I guess it didn’t taste so good either. The terrible thing was if Hadley didn’t get all of the medicine containing formula down she would end up having a seizure. This seemed to always happen at night and my tired parents wound up in the Emergency Room with Hadley night after night. I was routinely “shipped’ to my grandparent’s house while Mom and Dad were at the hospital with Hadley due to yet another seizure.

The first year of Hadley’s life she seemed similar to my other friend’s bothers and sisters except for the seizures, repeated Emergency Room visits and the fact that we went to the doctors’ offices every week. Then around Thanksgiving I can remember hearing my parents discuss the fact that they felt that Hadley was getting hard to move, her legs seemed stiff and she was not doing things that other babies her age were doing like sitting up and making noises.

It wasn’t too long after that the “Hadley club” as I liked to refer to it began. We had Physical Therapists, Occupational Therapists, and Speech Therapists coming to our house everyday. To her they were friends bringing toys to play with, to me they were puzzling, why did my sister need so many grown ups to play with her? And the truth be known, I began to feel that maybe my baby sister was getting more than her fair share of attention. I had been the center of attention of my family for the preceding 3 years and now I seemed displaced. I was too young to understand.

Mom and Dad kept Hadley in a stroller as long as they could. The next big thing that happened, about a year later after Hadley’s second major surgery on her contracted leg muscles, was when she got her first wheelchair. It was very hard for my parents. I was still too young to understand.

When Hadley was about two my mom tried to take her and me to the local playground to play together. Hadley could not play with me on all of the playground equipment. She couldn’t even get close to it as the mulch barriers prevented her wheelchair access. I spent a lot of time running around the playground and unfortunately she spent most of the time on the side with my mom watching me play by myself. This was both hard and sad for my Mom and disturbing to me. Why couldn’t we be just like everyone else’s families? I was still too young to understand.

My mom had enough of sitting on the sidelines with Hadley and one day after our trip to the local park she went home and told my Dad she was going to build a park where all children with and without disabilities could play together side by side.

In October 1996 Mom formed a non profit organization which would build the first and finest fully accessible playground in the state of Maryland and certainly one of the first in the country. My Mom went from stay at home mom to “mom on a mission” who would need to raise one million dollars to get this project done. She became a major activist and somewhat “politically involved.” She went to the state to help secure funding and in doing this I too became a political force by speaking before the State Senate and House on the need of such a wonderful place not only for me and my sister but for so many other diversely able bodied children. I was beginning to understand little by little the impact that my sister’s life was making not only on my small world but the larger world as well. I was growing up faster than some of my friends and yes I was starting to understand.

It wasn’t easy to be me and not be in the spotlight of my family, but I grew to understand that it had to be much harder being Hadley.

Hadley has made me understand life from a different perspective and has helped me grow to be a better more appreciative person. Her existence has taught me important lessons. I feel that the most profound lesson of all is that everyone is a person and that each person is of equal importance, no matter what they look like on the outside. Everyone deserves the right of being treated with respect. And some people need more help than others and those that are in a position to help are in a blessed and privileged position. And so I grew to understand.

I have seen firsthand how some people’s insensitivity and uneducated judgment can lead to misunderstandings and disrespect. I have also learned having the courage to confront such ignorance head-on can contribute to growth in awareness, positive changes in attitude, and stronger family and community bonds. Hadley has taught me that despite looks of “normalcy” all people are challenged and all people need love. And so you see Hadley has helped me to grow and understand.

My life and my family have been forever altered due to Hadley’s disability. We love her very much and cherish the joy she has brought into our lives. I know that she has helped me become a better person. She has helped my parents reach personal goals of which they never dreamed. I wish to acknowledge the important lessons I have learned and share them with the rest of the world. I plan to always behave in a manner that treats every person I meet with the dignity, respect and equality that their very humanity demands. I am old enough to understand and I feel this “with my heart.”

Ten things being the mother of a special needs child has taught me.

I am constantly inundated with a facebook survey sent from friends about “the top 25 things you may not know about me.” I started to write this at least a dozen times and when I get to the fifth thing I just say “forget it, I’m sure that my things sound so much like everyone else’s.” And frankly who cares what my favorite ice cream is (not that I eat it) or what my favorite movie is or what time I came home on the night of my prom. (Well that would be easy because I did not go-but that’s another story).

The more I pondered on this survey the more I thought about my life and how different it has been from so many of my friends, because I have been raising a special needs child for seventeen years. And then I decided it would be better to write “Ten things being the mother of a special needs child has taught me.”

This has been the greatest lesson in my life, definitely frustrating at times constantly questioning the almighty for delivering Ainsley to us but in the end when all is said and done and I put my head on my pillow at night I thank god for giving her to us because through her disability she has taught us all so much about life.

So here goes: Ten things being the mother of a special needs child has taught me.

Being the mother of a special needs child has taught me that “ignorance is bliss”, saying something to an adult staring at a child in a wheelchair is sometimes really hard to resist…

Being the mother of a special needs child has taught me to be patient with everything, which is just taken for granted a healthy child will bring…>

Being the mother of a special needs child has taught me that I do have courage to go on and it’s ok to cry, sometimes you just need to take a breath and give a little sigh…

Being the mother of a special needs child has taught me to be understanding of those less fortunate then you, as someday this could be your life too…

Being the mother of a special needs child has taught me to manage my time, since I have spent so many hours juggling doctors and therapists and work you would have thought I would have lost my mind…

Being the mother of a special needs child has taught me that I know what is best for my child, even if I have to fight city hall which at times can get wild…

Being the mother of a special needs child has taught me that there is a time and place for everything, and sometimes a giggle might just be the right thing…

Being the mother of a special needs child has taught me about hope, even with the smallest glimmer of things like toileting when I thought I was coming to the end of my rope…

Being the mother of a special needs child has taught me that I am stronger than I thought I could be. I have become a hematologist, neurologist, nurse, pharmacist, physical therapist, occupational therapist, speech therapist, personal assistant, manager, special educator, professional fundraiser, inspirational speaker, and an advocate all bundled up into the mom you can plainly see….

Being the mother of a special needs child has taught me unconditional love which I know came from my inner belief from the almighty above. I used to question why this did happen to me, and now although at times it is still hard to understand I cannot image what life without my daughter would be…