Erik Quinn: The Heart of a Family: Facing the Future

Saturday, June 09, 2007

Facing the Future

As most of you know, I'm a big chicken when it comes to meeting an adult with WS. I'm technically quite ready now, but it's still not something I'm excited about. Why? I have been thinking about it lately, and I have concluded that even with the therapy appointments, home visits, and special ed, living in complete denial is still an option at this point. I have grown accustomed to these things, and they are normal to me if I don't stop to think much about them. Erik can initially pass as a typical, adorable toddler quite easily if his orthotics aren't visible and he is on the quiet side. As he ages, however, WS will become more apparent in several ways. I admit that the fact WS will become more apparent in his facial features used to rip my heart into pieces. The fact that he will look less like us and more like the face of Williams is hard to bear, but I have come to terms with that, for the most part. I am comforted by the fact that he will retain his personality and sense of humor. He will, of course, likely always look a lot like me and Brian, too. I keep telling myself that he will always be Erik, through and through, and that my feelings for him will only intensify, if that is even possible.

My friend Shaena carries a photo of Erik in her wallet, and when she was on vacation, a member of her extended family whom I have never met saw it. Without knowing our story, she immediately knew Erik had WS. It was the first time someone had "read" Erik's face since I did the very first time before our diagnosis. However, she was quite familiar with this face. Her 1-year-old brother died of severe complications of WS. From Shaena's account, it sounded like this girl felt almost as if she had seen a ghost and that it was a little bit of a shock to her.

The WS convention is next year, and I am going to be there. The thought of being surrounded by those with WS and their families is more thrilling than anything I could imagine, yet there is fear in me, too. I have no doubt it will be a completely overwhelming, bittersweet, emotional experience I will remember for my lifetime. By that time, I'll be as ready as I will ever be. I will hopefully meet some of the wonderful families I have grown to love on line and be able to put my arms around them for the very first time. I think if there is one thing we have learned in our blogging neighborhood, it's that it is indeed quite possible to miss someone whom you have yet to meet.

My friend Aspen met a young adult with WS recently, and she wrote a beautiful post about the experience that has haunted me for days now. She mirrors a lot of the feelings I have about the possibility of experiencing this for myself, and I hope she doesn't mind me sharing her experience with you.

I miss you, Aspen -- and I can't wait to meet you.

Read about her experience here.

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6 Comments:

Anonymous Anonymous said...

Nancy,

I share your same fears for the future. In fact, I find that I don't worry so much about today, but always about tomorrow. Just yesterday, I came across this poem, and I found it very poignant:

“There’s a stream of trouble across my path;
It is dark and deep and wide.
Bitter the hour the future hath
When I cross its swelling tide.
But I smile and sing and say:
“I will hope and trust alway;
I’ll bear the sorrow that comes tomorrow,
But I’ll borrow none today.”

Tomorrow’s bridge is a dangerous thing;
I dare not cross it now.
I can see its timbers sway and swing,
And its arches reel and bow.
O heart, you must hope alway;
You must sing and trust and say:
“I’ll bear the sorrow that comes tomorrow,
But I’ll borrow none today.”

-author unknown

I, too, will be at the convention. I really look forward to meeting you and Erik. He and Sean will get along marvelously! I hope many of the other bloggers will be there as well. I'd be happy the be the official representative of all the "faceless readers" that are out there :)

Sandra

10:33 AM  
Blogger Every minute counts.... said...

I too feel the same as you. There is comfort and sorrow in meeting adults with WS. The convention is also very emotional. I thought I would be okay and about half way through day one..I called my best friend and was crying. I had to leave in the middle of a presentation to call her and I was a little embarrised but i think it would have been worse to sit there and cry in this group of my peers. It still makes me take a step back when I meet a new adult. they are wonderful people who have much to offer...I just picture my child older and know the hardships she will face. I have an older brother with a disability and I got to hear what was said when people think no one is listening. It is a hard road to travel but the joy you recieve is worth it.

I can't go to the convention next year...;(

Noel

5:53 PM  
Anonymous Aspen said...

I can't stop the tears now! Meeting Sean has been one of the hardest things I have done since my WS experience began. He is a special man to me and I will always hold a special place in my heart for him. However, I can't help but gasp for air when I am with him. With as much love as I feel for him, I catch myself with the sensation that I am drowning and my lungs are quickly collapsing.

The future is unknown and we have no way of knowing what each one of our future will hold. I am so glad that I have your hand to hold along the way. I miss you dearly and my heart aches for the time when I will get to see you and touch your face. Just to know you are real! I LOVE YOU NANCE!

1:45 PM  
Blogger Rosemarie said...

Oh Lord, bless these connections! Praying all of you find the perfect comfort and care among those who know best about WS.

5:35 PM  
Blogger Lisa R said...

I hope we are not to poor to go to the convention :( it is clear across the country for us...But I want ot meet everyone too...I missed a bunch Graduation and enrollment a cool poem and some major feelings thta hit home. I miss you Nance and just love your writting :)

1:40 PM  
Blogger Kerry said...

I am excited to go to the conference and meet everyone and learn as much as I can about Brady's WS... I feel sometimes I don't do enough to help Brady. I think it will be an eyeopener to meet the older kids with WS and I'm not sure how that will be. I have certain ideas how Brady will be when he is older and I don't know if it will mesh with reality. I do like to live in my own little world :)

HOWEVER ~ it will all be worth it to give you a big hug, Nance!!!! I am countin' the days...

5:34 PM  

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