Friday, November 5, 2010


I know I've said this before, but Dean to me is perfect. I look at him all the time and I just can't get over the thought that he is *missing* anything. DNA, schmeeNA. Ok, that chunk of missing DNA really *does* matter, but still, he is perfect to me. This is not denial speaking. I realize that things are not the same for Dean - there are reminders of that everywhere. But isn't everybody different? I think all the time about Dean and Cole and how probably even *without* PWS, they would be totally different people. I know that parts of Dean's personality are shaped by the typically-PWS temperament, but my gut says that they're just different little guys anyway. And Emmett will be his own little guy too.

When Dean was born, I remember thinking about all the ways that he came into the world unable to survive on his own: he couldn't stay awake, couldn't suck, couldn't move, couldn't maintain his own body temperature or blood sugars. Even something like having undescended testicles and knowing that he was infertile just felt like it sent the message that the universe didn't want anymore of him. He was given nothing to survive. I was so angry. And sad. But there was nothing I could do. Thank God for modern medicine that kept him alive through warmers, a feeding tube, therapy. And we were able to love him, of course, which I have to believe helped. :)

Now I look at Dean and I see all these wonderful qualities about him that, although they wouldn't have helped him to survive in the beginning, will help him to thrive later. He makes people smile like I have never seen. He is so nurturing and loves to hug people (he can be quite the flirt if he decides to! He has favorites :)). Dean's smile is completely contagious. He falls again and again and again and just keeps getting up. He doesn't complain about the things you'd think he'd complain about, the surgeries and prodding and poking and horrid blood draws (people with PWS are a tough stick); Dean just complains about normal toddler things like when Cole takes his toy, I take too long putting on his jacket, or I tell him that it's time to give me his toothbrush (he's fond of brushing :)). He loves music and now even tries to "sing" with me in the car when Cole's not around. :)

These qualities I know all will help him in life. I hope that everyone else can see them so they know what a great person they're dealing with. Cole gets more attention when we're out because of his red hair (everyone asks! It's funny) and because he talks a ton... and he's cute, too. :) But as Dean develops more into his own person, he has an awful lot to contribute. We intend to treat him as much as possible just like a regular kid and adjust as necessary. The adjustments we've already made have become just as commonplace as the adjustments parents make for any of their kids. We know him, and we just naturally do what he needs. Praying that we will always know how to do this as he grows.

Oh, and he's becoming quite tech-savvy. Ok, not really, but the computer sure is a motivator to stand and cruise. :)

Finally, Happy Birthday to my dad!!! A great father and a great Papa. :) 


Kevin said...

My ... what a thought provoking post! Could you flesh out what a "typically-PWS temperament" is? Also, please know how fortunate that you are to have Jack as a father. He has SO MANY great traits and skills and lots of humility as well. Your mother is blessed by God. (and Jack as well) :)

Ali Foley Shenk said...

I was told that typically, people with PWS are pretty easygoing, very nurturing and good-natured, and happy people. He also loves people and is able to play with others or on his own for a long period of time compared with other kids his age. These I understand are all part of the same temperament. Interesting!

Unknown said...

Lovely post Ali. Perfection has a different definition when you become a parent, I think.