Wednesday, September 16, 2009

The Reason I keep this blog...

I'm often asked by our nearby friends and family why I keep this blog... why I get personal with the stories of our family and in particular the ups and downs of life with Prader-Willi Syndrome.


Yesterday I got this e-mail and picture and I just want to take a second and share it with you.. as this is the reason I do this... This mom was so devistated by her sons diagnosis that many of our first phone calls all she could do was cry... This is what I vowed to do almost 15 years ago when David was born and we had no information, no support, nowhere to turn... I vowed to make sure that I do my part to make sure that other new families don't have to feel as alone and helpless I we did those first few weeks...


Hey Vicki - I reached out to you very shortly after our son was diagnosed with PWS in January 08. Since then we've had some serious injuries in the family , a tornado that wiped out our farm, etc. and I haven't been a very diligent communicator or connector. But tomorrow I am having our 2nd child and it is a leap of faith that I never thought I would be able to take. I have to say as strange as it sounds - I wouldn't be taking it without your presence in my life. The support you gave me and the HOPE you gently spoke into my heart at the darkest time in my life will never leave me and I think of you and speak of you on a near daily basis out of my admiration and respect for the amazing mother you are. I follow the blog regularly and it blesses my life to see those beautiful kids of yours beating their odds tremendously. My PWS mentor and I have never connected and she is having such a hard time with her own challenges that I hope it will still be OK for me to pitch some questions your way from time to time. J just turned 2 so we'll be transitioning into having to face more of this it seems . . . or at least in a different way. I hope you and your family and greatly blessed as you are such a blessing to others.