The Gregarious Brain
"They know no strangers but can claim few friends."
-- On people with WS from the article "The Gregarious Brain"
The article the WS world has been buzzing about made its debut on line today. As heartbreaking as this subject is to me, the article is beautifully written. If my child didn't have WS, I would be fascinated by this "genetic accident" from a scientific/curiosity standpoint. It's a truly bizarre syndrome. You can find the article in The New York Times tomorrow, but it is now available to read on line here.
There is also a video of Nicki, a 19-year-old girl with WS. Many of you have never seen someone with WS "in the flesh." In listening to her, the innocence that accompanies this syndrome is quite apparent to me. There are truly devastating cognitive disabilities that accompany WS, but they are often masked by near-normal language skills. If you don't have time to read the entire article, the video is worth watching. You can see it here.
People have told me since our diagnosis that I will someday be thankful our son is wired the way he is and wouldn't want him any other way. I do love Erik just the way he is. Does my heart break when I look at him struggling? Yes, and the pain is almost unbearable at times. There are days I seriously don't think I can stand one more second of this! I would never wish this upon any child or their family, and I still wish things were different. It's hard being thankful my life is so incredibly full because of Erik but at the same time cursing our circumstances, knowing the road ahead of our family is the most difficult one we will likely travel, especially for my sweet, innocent boy with a tender, vulnerable heart. One thing is going for us, though. The world is beginning to sit up and take notice of this group of individuals with some of the purest hearts on the planet.
I believe wholeheartedly there are angels in our midst.
-- On people with WS from the article "The Gregarious Brain"
The article the WS world has been buzzing about made its debut on line today. As heartbreaking as this subject is to me, the article is beautifully written. If my child didn't have WS, I would be fascinated by this "genetic accident" from a scientific/curiosity standpoint. It's a truly bizarre syndrome. You can find the article in The New York Times tomorrow, but it is now available to read on line here.
There is also a video of Nicki, a 19-year-old girl with WS. Many of you have never seen someone with WS "in the flesh." In listening to her, the innocence that accompanies this syndrome is quite apparent to me. There are truly devastating cognitive disabilities that accompany WS, but they are often masked by near-normal language skills. If you don't have time to read the entire article, the video is worth watching. You can see it here.
People have told me since our diagnosis that I will someday be thankful our son is wired the way he is and wouldn't want him any other way. I do love Erik just the way he is. Does my heart break when I look at him struggling? Yes, and the pain is almost unbearable at times. There are days I seriously don't think I can stand one more second of this! I would never wish this upon any child or their family, and I still wish things were different. It's hard being thankful my life is so incredibly full because of Erik but at the same time cursing our circumstances, knowing the road ahead of our family is the most difficult one we will likely travel, especially for my sweet, innocent boy with a tender, vulnerable heart. One thing is going for us, though. The world is beginning to sit up and take notice of this group of individuals with some of the purest hearts on the planet.
I believe wholeheartedly there are angels in our midst.
Labels: article, Williams syndrome
posted by Nancy at 6:35 PM
7 Comments:
I write with tears and a full heart. I'm humbled when I hear you speak regarding Erik with such love and honesty. It pierces my soul and makes me take notice as I recall my petty struggles as a first-time mother.
Unfortunately, our lives are touched by burden or struggle at some point. I can't begin to understand your circumstance. Still, I extend my hands and assure you with faith and heaps of courage you will make it.
I did watch the movie and you're right, they are angels in our midst!
Thank you for sharing Nancy.
I cant help but cry watching that video. What a beautiul young lady with so many hopes and dreams ahead of her. I think what made my eyes well up more than anything was that facial expression as she talks -yes she shows expression and emotion with her words but there is a 'vacantness'behind the emotion that is so damn familier. Just as i type this Jaiden walked up to me and asked "whats wrong mum?" and gave me a hug before running of and divebombing onto the couch to watch his movie.
Its a long road Nancy, but im sure it will be worth the pot holes.
I agree with what you have written. This article is so different than the one in the WSJ. They are angels. Yesterday Abi sat and tried to get Chris' Grnadpa to "wake-up" and she had us all in tears with her innocent attempts to get him to smile. People remember her because of her kindness and willingness to love everyone she meets. WS is a gift that is not fully understood, but it really is amazing to watch in action.
Noel
Beautifully said, straight and to the point, no apologies. There are definitely angels ~
I did not know if I wanted to laugh or cry while watching that cute little girls video clip...I saw alot of Tatum in her....I don't know maybe I ma still processing
I watched holding my breath, knowing that the stranger I would meet would not be a stranger at all, but someone so eerily like Erik. In a way, it's comforting to know that Erik is not in this alone. And neither are we.
Love, Mom
I printed the article out about 3 days ago. Here it is still sitting on my desk without me even taking a second glace at it yet. Not sure what I have been waiting for, but perhaps its time to jump in. Here goes nothing...
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