Erik Quinn: The Heart of a Family: Pieces

Saturday, September 20, 2008


(Brandon and Erik admiring a caterpillar lounging on a leaf)
I met Brandon and his family for lunch here in town today. I grab every opportunity I can get with other WS families. Brandon and Erik are so incredibly different in many ways, but they look adorable together and seem to truly like each other. Brandon now has a beautiful baby sister, just a few weeks old, and Erik did better with the baby noises that came from her, although he still clung to me and acted as if she were packed full of ammonium nitrite and ready to explode at any moment. On his list of things that give him the willies, babies are definitely numero uno. Luckily, Brandon's parents are on the same page (the one that lists the potential jacked-up side effects that tend to occur when you subtract twenty-some odd genes from chromosome number seven) and did not take offense in the slightest. What is strange to me is that Brandon seems to be fearless when Erik seems to exercise an excessive amount of caution in unfamiliar surroundings and does not seem to be bothered by sounds like Erik is. They definitely both have very unique strengths and weaknesses, despite having the same syndrome. Did I mention how cute they are together?
I read the following article on line this evening about the death of a 35-year-old man with WS named Dave Hahn. Although I did not know this man, my heart absolutely ached when I saw his photo. He has features like my son. The same eerie physical similarities that come from belonging to a very special family consisting of those who have a genetic birth defect that makes them more perfect and good-hearted than I could ever be, no matter how hard I tried. Over the years, I expect to hear the news of many more premature deaths of those with Williams syndrome, but I can't imagine it will get any easier. Each time, a little piece of my heart seems to float up into the night sky and leave a dark hole in my chest where it once was. I know that in his community there is a hole that will never be filled. It hurts.
I learned the hard way just over two years ago that life isn't fair but it is precious, and I continue to learn that lesson in unexpected ways. Every single day with my son is a gift. This ride is difficult and sometimes very painful, but it could end without warning, so I find joy in it as much as I can. Erik has changed me so much. On the ride back from the valley with Brian last weekend, I looked out my window as we traveled down the highway, and we were slowly overtaking a motorcycle to our right. Behind the man piloting the machine sat an older, surprisingly proper-looking woman. She was very gracefully enjoying a hamburger, taking delicate bites despite their respectable speed, and she looked so incredibly content that I found myself smiling broadly. She glanced over at me, and couldn't help myself. I waved enthusiastically. She waved right back and connected me that much more with the world. I used to look at the ground as I went about my daily life, but now I sometimes take the time to look up into the faces around me. It's what Erik would do, and I can thank him for that. I have no doubt that the world is a better place because of the special people like my son.
I know my little world sure is.
Godspeed, Super Dave.

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

Wow, I read the article and then the comments that people left...amazing! It just breaks my heart, to think he was my age and now is just gone...
Thank you for sharing it though.

I do love the picture of Erik and Brandon. It is also amazing to me that two kids with the same syndrome can have so many differences but be so alike in some ways.


6:35 AM  
Anonymous Anonymous said...

Gua said...

Such a beautiful post. My birthday is Wednesday (as you know!). Consider this blog my birthday gift. I'm a blessed woman.

Love, Mom

5:50 PM  
Anonymous tara said...

I was like Noel - I read the comments people left and it is amazing to me how many people he touched. Thank you so much for sharing this.

LOVE the picture of Erik and Brandon. Have I told you latey how absolutely adorable your son is?!!!

7:50 PM  
Blogger Ava Jewel Leilani said...

Nancy, your Erik is so handsome, I love the pictures!!!

12:33 AM  
Anonymous Auntie Cinnamon~ said...

Okay... never thought a picture could be so adorable of two little boys checkin out a bug~

I want to wish a very Happy Birthday to one of the best Grandmas ever!!! Happy Birthday Gua!!

And who is that skinny girl holding Erik's hand? heeheehee

BIG Hugs,
Auntie Cinnamon

7:53 AM  
Blogger Heather said...

OMG, I was just looking at Caleb in the future.

Nice picture of the boys! Glad you are keeping in touch with them.

11:43 AM  
Blogger Lisa said...

That is amazing...I love the pictures from sears too...looks like you all had a good time visiting....sorry I have been blog MIA....I suck

10:14 AM  
Blogger Laura said...

Love that picture of the two boys. I'm glad you're able to keep in touch with them. I'm always amazed at how very different these kids with the same syndrome can be.

A belated HAPPY BIRTHDAY to your lovely mom!

3:27 AM  
Blogger Michelle said...

what a cute pic of the two of them looking at the caterpillar!

I read the story on Super Dan; how sad that he died so young, it sounds like he led a full life and was well-loved by many. I didn't realize premature death was common in Williams syndrome...does it come from heart issues?

8:14 PM  

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