I’ve never been to Holland, but I think it would be a special place to visit. Imagine touring the countryside thru fields of tulips (because why wouldn’t you go to Holland when the tulips are blooming!) with windmills dotting the landscape. Oh windmills! We love windmills! In decorating our house, Sister and I really wanted a to find an authentic windmill. And lucky for us, we found a beautiful rusty windmill at the City Farmhouse Pop-Up Fair last fall. The galvanized patina has gorgeous shades of blue-gray mingled with rust. Its a perfect addition to our family room.
But it also has a pretty significant meaning for us. You see, we have a very special little guy in our family named Landon. He has a genetic disorder called Cornelia de Lange Syndrome. Unless you know someone with this disorder, it’s unlikely that you have heard of it.
Cornelia de Lange can effect any system in the body, it can include hearing, vision problems, feeding and GI issues. It can include physical, sensory, cognitive and behavioral issues. People with Cornelia de Lange, otherwise know as Cdls, are small in stature. At 5 years old, Landon wears 18-24 month clothing (usually with a tuck in the waist band to keep his pants from failing off!). He has feeding and GI issues. He has gone thru an 8 week intensive in-hospital feeding program and is now able to eat semi-solid food. Landon has hearing loss, is non-verbal and has significant developmental issues.
But the thing is, Landon is so much more than a little guy with Cdls. So who is Landon? He is simply one of the happiest, most joyful kids you will ever meet.
He loves to give kisses to his people. He knows LOVE and is gleeful when surrounded by his family, the more the merrier. In learning to communicate, he has learned some sign language, in particular, he knows ‘I Love You’. It is heart warming to see him use this sign, and know that he knows exactly what he is saying!!
Landon is smart. He is terrific at puzzles and a whiz at stacking blocks. He engineers the most teetering stack of blocks that defies gravity in not tumbling down, of course till he knocks them down.
Landon is strong. And he is a climber! He can scale the washer and dryer in a flash, climb onto any counter, dresser or any other surface faster than you can cross the room to get him down. Baby gates are no obstacle for him. And did I say he is fast? If you are not real quick, you may find him swinging from a chandelier, seriously. LOL! I am convinced that Landon will someday be a world class mountain climber.
Landon has sensory issues. Don’t let food get on his face. No finger painting! And stepping in a newly tilled garden in bare feet, is not a pleasant experience. And at the end of a school day, Landon heads straight to his room. He has had enough sensory interaction and needs some alone time. If you walk into his room, he will take your finger and politely lead you out and slam the door behind you! Teenager in training!
Landon currently attends pre-school and loves it. The whole school knows him, he is The Little Guy. The kids line up on the playground to go down the slide with him!
The teachers want him in their class. It’s pretty cool that people you don’t know, greet Landon, your non-verbal kiddo, while you are in restaurants or running errands. Again, because he is well known and loved. We feel so lucky that he has such a huge circle of love surrounding him.
Landon shares a love of music with his parents. Did Landon inherit his dad’s musical abilities?? Well if you listen to Landon play the piano, you would know the answer. Hehe!! He has always loved any keyboard toys. He will play them for hours and hours! And then he will play them some more. Haha!
So you might be wondering what this special guy has to do with Holland or windmills? There is a very well known poem written by Emily Perl Kingsley called ‘Welcome to Holland’. If you have or know a special needs child, you may by familiar with it. The poem beautifully illustrates that while having a special needs child was not anything you would have dreamed of, its a pretty special place to be.