Erik Quinn: The Heart of a Family: A Life Like Yours

Friday, May 04, 2007

A Life Like Yours

It is time to sit down and reflect on Sophie's Run last weekend. If you haven't read about it here before, it's a race put together to benefit the future needs of a little girl named Sophie who has Williams syndrome and raise general awareness of WS. This was our second year participating. Last year we were just one month into our diagnosis, so, needless to say, this event is a very emotional one for both me and Brian.

We had more friends and family than ever with us this year and made a grand party out of most of the weekend. At one point, someone commented that we had "quite an entourage!" I especially enjoyed spending some time with our nephews, my brother-in-law, and my sister-in-law, who live out of town.

Sophie's Run is one race where you will never hear the sharp crack of a starting pistol. This means I will never have to stop and hold my screaming child with the sensitive ears. This in itself illustrates how we are treated by the people we meet there -- They understand Williams syndrome and all that goes along with it. I will always harbor a sense of guilt about expressing how alone I feel here when I am lucky to have so much support from my friends and family. However, to be in the presence of those with children like our own son is such a powerful need that our friends and family seem to understand. We are able to share knowing smiles, giggles, and tears over things that nobody else would begin to comprehend. It feels wonderful. What makes the day more special is the fact that we are surrounded by the friends and family who support us every day and have watched us struggle. In this sense, we get to have our cake and eat it, too, with support from every direction. In this case, it was Sophie's birthday cake!

I knew there would be a woman present in her 40s who has WS. I spotted her immediately as the race started. Looking back at my photos, I am never within a 30-foot radius of her. At the time, I didn't realize I was avoiding her, but that's how it seems now. To put it bluntly, I was scared out of my mind to talk to her, although I was so happy she was there. She attended the pizza party afterwards, and Brian made a point to strike up a conversation with her and try to get a feel for her life. He wanted to ask many more questions than he did, but he was afraid of adding to her apparent anxiety and making her feel like she was being interrogated. He collected what information he could in a sensitive manner and seemed to come away with more questions than he started with. Erik also met this woman as well as a new friend, Brandon, who came with his parents Tina and Marco. I was extremely happy to see them and walked with them for the majority of the course. Maddie was there from last year, and you will see her amazing smile in the slide show. She has grown!

Never in my life would I imagine we would experience the devastation and challenges that would come with having a baby. Brian and I do not have the luxury of being in denial anymore as we watch Erik grow and his differences become more apparent to the world. At the same time, I never imagined how many blessings this child would bring into our lives. In short, he is simply a delightful person I can't wait to see every morning.

One year ago I thought I would never smile again, but I do. As I felt the arms of my old and brand new friends around me and their tears mixing with my own on my cheek, I felt like my desperate prayers had been answered--in a big way.

The following is a speech read after the race that was written by Sophie's mother Heather. I was awestruck and somewhat blindsided by her words and asked her to send me a copy of what was said. She was brave enough to put into words what a lot of people don't dare say. And that is why I love her.

We thank you all for coming...and for getting to know Sophie, which naturally leads to loving her like we do. We, too, find her utterly irresistible. But we can't help but wonder when the day will come and the world won't find her so irresistible. When the world she has come to trust, with all her heart, shuns her for her differences. The horrible day when she is treated as incompetent, made to feel inadequate or God forbid someone calls her handicapped/retarded.

Please remind yourself and your children that people with disabilities are competent, deserving individuals of value. One in five Americans is a person with a disability. We're all the same and we're all different. People with disabilities deserve to lead A LIFE LIKE YOURS. They deserve access to quality medical and dental care and the opportunity to work where they wish, develop friendships, and live in the community setting of their choice.

Too often we blame individuals with disabilities for their lack of success when it is our society who dictates that many people with disabilities remain in the margins—segregated, dependent, and WITHOUT CHOICE. Let's do better by giving the people with disabilities in OUR OWN lives the tools and support they need so they too can make their own choices which will hopefully lead them to a life of purpose and value.

Of course our goal is for Sophie to live an independent adult life in which she supports herself. Yet because Sophie was born with Williams Syndrome and 75% of individuals with a disability remain unemployed we are formulating a "PLAN B" to help ensure she will have the support she may need to lead A LIFE LIKE YOURS.

So today we THANK YOU for being here and helping Sophie with her very own "plan B".


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10 Comments:

Blogger Every minute counts.... said...

Love the pictures! I wish I could have been there :( It looks like you got some of the bonding with families that you needed.

(Looking at the pics...I think Erik looks alot like his mom!! )

Noel

12:27 PM  
Anonymous Anonymous said...

I am quite jealous of your weekend. Thank you for sharing it with us!

Saandra

3:11 PM  
Blogger Kerry said...

Wow - what great pics. Erik looks so grown up... he is getting bigger and bigger.

That is so great you had so many people with you for the Run. Sophie's mom's speech really took me back... all so true but so hard to hear. How wonderful that she said it, and how wonderful she had all the support out there.

The movie is fabulous.. love that song!

5:20 PM  
Blogger Kerry said...

One more thing... I too would have been following the older WS woman around... wondering what information I could soak up from her. There's so much I would want to ask.

5:25 PM  
Blogger THE PASLAY'S OF IDAHO said...

ONCE AGAIN, THANK-YOU FOR INVITING US TO SUCH AN AMAZING EVENT! WE WERE SO HONORED TO BE ABLE TO JOIN YOU ALL ON SUCH A DAY! THE MEMORIES WE MADE AND THE EMOTIONS WE FELT WILL FOREVER BE INSTILLED DEEP IN OUR HEARTS!

LOVE WHAT YOU WROTE AND THE SONG FOR THE SLIDE SHOW JUST ROCKS!

ALL OUR LOVE,
BRAD, DAWNITA, BRAYDEN AND BROGAN

6:40 PM  
Blogger Lisa R said...

Great pics!!! I need to really start running again I miss it...I love the speech it is very touching :)

5:42 AM  
Blogger kathi said...

Nancy, the way you share your life and tell your stories to us, you make us feel like family. I'm so thankful for you, I love and admire you.

Your son is an angel, he touches everyone who comes near him. You can see it in the photos and the stories you tell us.

Thank you for adopting all of us, for sharing with us and letting us in to your family's life.

3:14 PM  
Anonymous Aspen said...

I have now watched this slide show about 50 times and still I am left speechless. The pictures are beautiful and I am terribly jealous that Daven and I couldn't make it there for the big event. My favorite pictures are of Erik in his stroller sitting up looking down at those wheels. This couldn't be any more like Daven. He is so happy ti sit up in his stroller watching those wheels roll along. Those boys are two peas in a pod!

Thanks for sharing the stories and pictures. I loved them all!

1:54 PM  
Blogger Rosemarie said...

Making memories surrounding this journey will become a source of strength for you and your family, as we already have witnessed through this post and video.

It's apparent that visiting here and sharing in the progress of Erik and your emotions as a mother has heightened my awareness.

I believe that you are, and will become a greater voice for WS.

4:14 PM  
Blogger Rosemarie said...

PS This will be a featured post and you've been tagged!

4:15 PM  

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