I've Decided to 'Hold Hands' With My Daughter's Rare Genetic Disorder
Dear Williams syndrome,
For 15 (almost 16) years you’ve been front and center in my life. Whether or not I wanted you there you were, showing up at the most inopportune moments. Like right before my 3-week-old baby’s surgery you potentially caused cardiac failure on the operating table. Yes, that was one heck of a way for you to introduce yourself to me.
And let me just say that because you’re pretty rare (1 in 10,000) I have to explain way more about you than I ever thought possible. In fact, sometimes I sound more like Wikipedia than I care to admit. Pretty much no one is aware you exist and certainly when I mention your name, everyone thinks maybe you are lethal in some way. Candidly, they think ill of you — at least in the beginning.
There are those of us who have accepted our lives with you embedded in it. Without you there are a number of concepts I would never fully understand: strength, courage, failure, fear and most importantly the concept of the journey. You will be with me on the journey through life forever and I want you to know instead of fighting, kicking and screaming, I’ve decided to simply hold your hand.
Before you entered my world I was never privy to all the issues a disability such as yourself could manifest. Basic civil rights and independence are no longer a given — they suddenly became goals.
Along this journey so far I’ve met some really incredible people. Some are scared of you and some think you’re pretty cool. They dig your love of music and cocktail personality. Most could do without your anxiety or the anxiety your heart and kidney issues give. But that’s OK, because we just take you to the very best doctors and learn as we go.
Perhaps your most endearing quality is the fact you love everyone, whether or not they love you. No, really. You’re blind to the fact that people can be fake or can barely even speak to you. You don’t care — you will smile at them until they are converted to your way of thinking, until they see you.
What I’ve found so far is I like holding your hand. It’s oddly comforting and I really think we can foster awareness and acceptance. We can work together to educate and empower and, quite frankly, I’m looking forward to it.
The president of your fan club
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