First, go here and watch this video. It’s worth it, I promise.
A mom whose daughter was recently diagnosed with Cri du Chat Syndrome shared it with me. I was blown away.
I cried happy tears for this man who sees beauty where others usually don’t. And, of course, it got me thinking.
On February 24th, 2001, when I was sitting in the doctor’s office holding Matt’s hand while cradling my newborn Olivia in my arms and hearing the news of Olivia’s diagnosis, sobbing my confused and desperate-for-information tears, I would have loved to see a picture of Olivia. Not Olivia 2001, but Olivia 2013. What a difference it would have made to not see a 30-year-old article with terribly outdated and incorrect info, but a picture of a beautiful and happy girl. Maybe even a picture of a family. Who looked happy. And normal. And were breathing. And living. Because I can promise you, at that moment in 2001, I couldn’t imagine that picture.
In my head, I saw all of the things this article and the doctor were telling me. Moon-shaped face. Tiny head. Wide set eyes with extra skinfolds. Low set ears that stick out farther than they “should”. Large nose bridge. Low muscle tone. Mental retardation. An obliterated future. Me quitting my job. No money. Fear. Pain. Anger. Anguish. I didn’t see beauty when I imagined our future that day.
What a difference it would have made if, instead, I saw a smile that was so full of light you’d swear she swallowed the stars.
What a difference it would have made if, instead, I saw beautiful brown eyes that were full of humor, intelligence, happiness and joy.
What a difference it would have made if, instead, I saw a girl sharing a laugh with two brothers who obviously adore her.
What a difference it would have made if, instead, I saw a Dad so full of love for his daughter it almost breaks your heart.
What a difference it would have made if, instead, I saw a Mom who is so in love with her daughter she can’t see straight.
What a difference it would have made if, instead, I saw a family hiking through Maine or the Colorado Rockies or swimming in the ocean.
What a difference it would have made if, instead, I saw a little girl getting her first hit in baseball.
What a difference it would have made if, instead, I saw beauty in a life that is worthwhile, that is special, that is a gift.
What a difference it would have made if, instead, I saw her through my eyes instead of theirs.
I can promise you it would have made all the difference. Here’s to you, Rick Guidotti, and everyone else who sees beauty everywhere.
A smile so full of light you’d swear she swallowed the stars… LOVE.
So raw, honest, and filled with love. I see your heart in these words.
Yes, yes, yes! I always say that this is why I’m so glad we didn’t get our Olivia’s diagnosis until she was almost two and a half years old. By then I already knew how amazing she was, how much more she was than a diagnosis. I didn’t mourn the child I thought I was having because she was it, right there in my arms, filling me with joy and love even as we received what could have been a heartbreaking diagnosis. I love that our girls can I inspire other parents who are just now receiving a diagnosis of 5p-.
BEAUTIFUL! This post is amazing! You have always seen the beauty in Olivia. Thanks for sharing it with others :o)
Thank you for the link to the video. My husband and I watched it together and were really touched by it.
This post here is soul stirring in a major way. When we were told our son’s diagnosis the Dr put his hand over the medical pictures of the child featured in the literature he showed us. It was such a dismal approach with the Dr actually saying the words, “You think the worst is over but it is really just beginning.” I think Drs being able to offer families hope in these situations is one of the greatest things they can give families. I’m so glad this photographer is doing something about it. AND people like yourself who are showing the world how special, beautiful, and full of love life is with a child with a diagnosis. I love how you share about Olivia and how amazing she is and your life with her is too. (I know its not always easy but I know its totally worth it and you do a great job sharing that.)