Erik Quinn: The Heart of a Family: Unwritten

Friday, July 07, 2006

Unwritten

I am still trying to adjust to the idea that there are children all over the world that look like my son. What a bizarre concept! I opened photos of a new friend's son on line this morning and was shocked to see such similarities in a sweet face I had never seen before in another country. Of course, he was GORGEOUS to me! One of Erik's smiles is a wide open one I have only seen on WS children. When he gives me that smile, I simply melt. It is my favorite smile he has. I have never seen such an expression of pure joy. I am quite familiar with the features of Down syndrome but had no idea there were other syndromes that caused children to look so similar to each other before we started this journey. Yes, Williams tends to be more subtle, but the features have always seemed quite obvious to me. I have read that historically Williams syndrome has been called "elfin facies syndrome" because of these classically "cute" features. When I diagnosed Erik myself, I had to move his photo from the wall over my desk because I could see Williams so clearly that it was upsetting. Imagine seeing your child's face on an unrelated child for a moment. It was a very eerie feeling at first, and yet it is now a fantastic, beautiful thing to me. I watched a program on Treacher-Collins syndrome (chromosome #5) last weekend and was moved by their own convention, which they call a "reunion." I was afraid that watching this show would depress me completely (my husband even asked if I really wanted to watch it), but I found it entirely enlightening and inspiring. These kids can see themselves in the other faces around them, and it seems to give them an instant sense of belonging and peace they have nowhere else. When Erik is old enough to appreciate going to the WSA convention, I think I will be ready to be there to help give him that gift. I am now myself feeling drawn to these familiar faces. Admittedly, I am still very fearful of this experience, but maybe my fear simply stems from being vulnerable to the intensity of being there.

Yesterday I heard a song on the radio and now have it in my collection. It was one of those moments in which I wondered if God was trying to tell me something. I imagine it helped me realize the diagnosis of Williams is not the end of the world, even though I wish I could change things. I am now just beginning to be able to see that Erik's future, although there are bound to be limitations, is unwritten. If I could share a copy of this song with you, I would. I would also instruct you to kick back and blast it until the neighbors complain. I think it says a lot about both WS parents and our kids. Erik and I blasted it in the middle of a small snarl of traffic yesterday on the way to grandma and grandpa's yesterday afternoon. It also struck me because Erik discovered rain this week and was amazed by it.

Unwritten
by Natasha Bedingfield

I am unwritten,
Can't read my mind
I'm undefined
I'm just beginning
The pen's in my hand
Ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

I break tradition
Sometimes my tries
Are outside the lines
We've been conditioned
To not make mistakes
But I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live you life with arms wide open
Today is where your book begins

The rest is still unwritten
The rest is still unwritten
The rest is still unwritten

http://www.amazon.com/gp/product/B000CD0P8M/sr=8-1/qid=1152290014/ref=pd_bbs_1/104-4277205-8327140?ie=UTF8

3 Comments:

Anonymous Susan Rohde said...

HI!
I absolutely love to read your blog for you write so eloquently!
I just wanted to let you know that Jaxson had his annual drs. visits at Mayo Clinic on Monday and things look great. His echo has not changed one bit since last year and his calcium levels were awesome. All we need to do is work on him gaining some weight...easier said than done, huh!?!
I love how you express yourself in terms of the diagnosis. I honestly remember being in the exact stage that you are in now and I must tell you that it gets better and easier. Now I am in a great place and at "peace" with myself and Jaxson and the diagnosis.
Have a wonderful day!
susan
srohde@eidebailly.com

10:40 AM  
Blogger Kerry said...

It's so funny; I have been talking to everyone about how Brady has "cousins" all across the States. It's something I am so amazed by and I think they too will be glad to have their own "club". My son Michael is always telling me who has his same birthday or also has a peanut allergy like him.

I also like this song; and for you Idol nuts it's the one Ayla sang that got her kicked off; however it made us love the song. I think it completely shows what you are capable of - anything!

6:26 PM  
Anonymous Kati said...

Am I right that Szabi is the little boy wha has so much similarities with Erik??? :))))))
Another mom with ws child wrote that ok, ok, ws children has so much facial similarities, but the genes which they got from their mom and dad are important, too. That's why I felt a little shock when I saw Erik first... I saw a lot of photo of ws children, but Erik is who beated my heart :) Maybe there is a similarity between Erik and Szabi's moms and dads? :DDDDDDDDDD

11:18 PM  

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