Open Arms

So now I come to you, with open arms
Nothing to hide, believe what I say
So here I am with open arms
Hoping you'll see what your love means to me

-- "Open Arms," Journey (1982)

This is just a note to express my gratitude to everyone who e-mailed me, called me, and commented on my recent post. Even some very friendly lurkers spoke up for the first time! Welcome! In fact, the response was so incredibly overwhelming that it was not possible to spend the time I wanted to in order to respond to each and every one of you the way I would have preferred. This will have to do for now.

I suppose the mixture of emotions in my heart now is to be expected in this long process. However, blogging brings a very interesting twist to it all. Since I have been writing my feelings down here and so many people are reading them now, I am truly experiencing some degree of guilt about what I am expressing. I know some of the things I write many people would personally keep to themselves. There is also the fact that I am developing a teensy-weensy case of stage fright. For those of you who have never met me, just two years ago I was nearly too shy to go to the grocery store. I actually dreaded the social interaction! One of my friends will insist I look quite confident in a nerve-wracking situation, but I wear a triple coat of pit stick before speaking to strangers or giving a speech. The irony of what Williams syndrome means socially in my own child is not lost on me. Ha ha. Very funny, God. There is no longer the remote possibility I can successfully slip by unnoticed in a public setting when Erik Quinn is with me. I suppose that is also true on line. After all, he is the reason you are reading this now. There would be no blog and very little of my writing without him. I would still be hiding at home.

I have thought long and hard about what to say here. There is no way I can really voice the gratitude I feel for all of your support and encouragement without sounding like I am reading the lyrics off the back of a Journey album cover, so I will cease and desist for now.

Thank you.

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.