May 09, 2015

CdLS Kids

   People ask me all the time, "what is Cornelia de Lange Syndrome".  I give the text book explanation "they have cognitive and physical disabilities, similar facial features, non verbal, eating difficulties, etc... blah, blah, blah". Same old, same old over and over. Not that I mind explaining it to people because I love educating people about my daughter and about CdLS.  The more people that know about it, the better off our society is.  However, there is so much more to these tiny, mighty kids then just the text book explanation.  A mom in one of my support groups wrote it perfect.

CdLS Kids
Persons with CdLS are possessors of great strength. Fighters despite all odds; despite pain and illnesses and frustrations most of us can only imagine.

They are grabbers of hearts. The mischievous twinkle of their eyes impish grins, and throaty, infectious laughter – all guaranteed to win you over. Their keen sense of humor and love of teasing never fail to delight. While sensory issues often prevent overt shows of affection, it makes the rare hugs and kisses seem all the more precious.

They are lovers of mirrors and lights, music and movement – often spinning and dancing to their own inner rhythms.

They are collectors of treasure – shoes, hair bands, utensils and all manner of odds and ends. Safekeeping in backpacks and boxes, keeping them close to heart and hand. They are organizers and sorters; lovers of schedules and order, calmness and quiet.

They are attentive observers; watching the world through sidelong glances, taking it all in without appearing to…only to surprise you later with what they know. Nothing is missed! The most minute details, the mechanics, the “how to” of things are a source of fascination and humor. A puzzle or widget will intrigue, while a sudden flick of a finger or toe can bring gales of laughter.

They are clever and adaptive; problem solvers. If conventional won’t work, then unconventional is just fine, thank you! Despite difficulty with or inability to speak, they find ways to communicate whether through sign, gestures, sounds, touch, or simply a look. They possess a wisdom that is often belied by this lack of speech. However, one need only look into their eyes to realize the depths of their souls.

They are curious and mischievous; quirky and unpredictable. They can simultaneously drive you mad, break your heart, and evoke depths of love you didn’t realize you had. They’ll steal your heart…right along with your eyeglasses! Collectors of treasures, holders of miracles grabbers of hearts. To know a person with CdLS is to be touched by love.

By: Sandi Guevara

And that is what Sadie is all about!

No comments:

Post a Comment