Welcome to our Pitt Hopkins family. 

Sibling viewpoints

Sofia
written at 10 years old, sister to Victor

Pure joy is what I enjoy every day from the crack of dawn to midnight when I play with my little brother Victor. Some people may think it’s a burden to have a special-needs sibling, but Victor has taught me to clear myself of all human burden, and soar with happiness. Victor always makes my day with his fabulous smile and his ability to make the best out of life. He is a teacher of true love, as are all the special-needs people all over the world. Everyday he teaches me to love myself and the world more and more, to make the best out of the hardest situations, and to not only recognize the visible things but also the heavenly things that come from the heart, like faith, courage, joy, and most importantly, love. It is these very things that make us rich, heavenly rich. Victor is the joy of my life and the treasure of my heart. I love Victor!

Francesca
written at 8 years old, sister to Victor

My little brother, Victor has special needs, and has Pitt-hopkins syndrome. Victor is adorable and shines through everything. He has dark brown hair that is almost black, dark brown eyes and a tan. His smile is big bright and joyful. If there is one thing he does most it is to smile and be happy. He really is a big dreamer.

Although, sadly, Victor is allergic to all nuts, milk and eggs, he is a great leader, learner and listener. He is a small climber. He can not talk so he is not physically a speaker, but he really does speak, emotionally and mentally.
You could paint his fingernails sparkly hot pink and he would love it. Victor is very well rounded.
Victor is someone you can count on. He is social, athletic and can walk and almost run, his syndrome makes him a little slower but he is doing well even though he is only five. Victor, my little brother is one of my role models.

 

We want to share a story with you that has helped many of us in our own journeys. It was written by a mother of a child with Down’s syndrome. She worked as a writer for Sesame Street, receiving many Emmy Awards.

WELCOME TO HOLLAND

by Emily Perl Kingsley

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