Friday, May 31, 2013

PWS Awareness Day #31: Reflection - Part III


The future. When Dean was diagnosed with PWS as a newborn, we thought that it meant our future was forever changed. And it was. There is plenty that we took for granted before that we just can't deny now. There are aspects of PWS that Dean already deals with and that we know will continue to challenge Dean and challenge us.

But really, what we have learned from Dean and him having PWS is that none of us really knows what is ahead, for those who are typically developing or not. If we think we know, it's just a dream. A GOOD DREAM, and one worth holding onto, but it's not in our control.

And on the PWS front, we know that something good is coming. We believe that the research that has already benefited Dean and others with PWS will continue to grow and reveal new breakthroughs to eliminate more challenges. Every time we go to a PWS research conference, I'm amazed to hear these doctors and scientists who give so much to figure out more about this crazy syndrome to help our kids. God's hands at work!

Especially in the harder days, I think ahead to the rest of Dean's life or if something were to happen to him (or to me/us!) and it's overwhelming. But day by day, year by year, we're giving Dean the life we said we would given him, however we can. He's a special kid, but we have three special kids, and in the end, Dean is a kid just like Cole and Emmett. I don't know why Dean has PWS, I don't know why anyone has PWS, but it is what it is. We're doing the best with what we've got, and I think that's all that any of us are trying to do....

I'm not going to lie, I'm thankful this month is over. lol I really appreciate everyone who has read these. I have been overwhelmed by the amount of messages and emails and in-person thanks for writing these and all that you have learned!! Pumps me up so much. Thank you all for being part of the village. :)



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