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.