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.

Beach Day...

Hi everyone~

After yesterdays downer of a post.... so sorry about that... sometimes it just gets to me...
Anyway... Today was a great beach day...here's some pictures...

He's off....

Hi Loved Ones..
I dropped David off at camp today at noon for 2 whole weeks. Part of me is jumping up and down doing the Happy Dance! I have 2 WHOLE weeks free of David and his issues..

Then there is the other part of me...

The part who got a lump in her throat saying goodbye to him for 2 whole weeks...

The part who wishes that his life was easier... that I didn't so DESPERATELY NEED these 2 weeks break as part of my survival with this damned syndrome.... hell.. I have never sent ANY of my other kids away for 2 weeks.... actually.. I am getting ready to send Alex off to college in 3 weeks and I don't think HE has ever spent 2 whole weeks away from us.. so why is this break so needed????

David is high maintenance... always has been. Probably always will be. His very existence revolves around how many buttons he can push in a day... in an hour... in 15 minutes... you get the picture right? He isn't happy unless there is turmoil.. he can't enjoy a day at the beach... he is ALWAYS worried about what is next... NEXT ACTIVITY... NEXT FOOD OPPORTUNITY... NEXT OPPORTUNITY TO MAKE SOMEONE LIFE DIFFICULT.. this is our reality with him and with PWS... it is not like that with the other 2... I'm not sure why.. but they are both so easy comparatively!!

By this point in the summer I am ready for the week break... ready for not dealing with his issues for 2 weeks... ready to go park my ass in the sand at the beach and not be nagged to death about "what is next" It's hard to explain... part of me feels like a part of me is missing with him gone for 2 whole weeks... and part of me (possibly a bigger part) is so thankful for the break that I feel guilty for how much I am looking forward to it.
I know he is well taken care of at camp..... I know he has a blast... I know that he probably misses us but is enjoying his break from us... BUT....

I still feel that pang of guilt that I can't provide the structure he needs...
That I am really looking forward to NOT dealing with him and all his issues for 2 whole weeks

Ok.....not sure where this post is going.... so here are a few pictures from today....

David all packed and ready to go

Everyone at camp welcoming the campers!

\

DAVID and he favorite counselor Amy!

In his cabin all unpacked!





With his counselors for the next 2 weeks!

I know he will do just fine... probably "too" fine.. and another little piece of my heart will be ripped out in the process.... life with PWS is just plain ol' hard sometimes....

~Vicki

Playing "Catch Up!!"

Hi All!

I'm not really sure where the summer has gone, but I already feel like it is slipping away faster than I can possibly enjoy it!

The Knopf Family has been on the go this summer... we had Dave's parents here back in June for the big GRADUATION WEEK.... Alex Graduated from High School: As seemed to be the case every single time we had something to do outside this spring/summer... it rained. So the pictures are not great... I was trying to keep the camera dry but still get a few shots..
Alex right after getting his diploma!

Alex and his girlfriend Kourtney

Alex with his Grandparents!
David graduated from Middle school the next day: Again... the pictures aren't great...but here are a few


Then on Saturday we had a big family party to celebrate both graduations.. I got a few pictures in before... well... it ummm.... RAINED again. When I tell you it rained... I mean down poured! It went from being a nice sunny afternoon to a monsoon in the matter of a couple of hours!! But we made the best of it anyway...

Here are some of the guys playing a game of horseshoes...Dave spent the week putting the pits in!

Dave's Dad and Uncle with David

That next Monday we went to Alex's college orientation for the day... I can't believe in a few short weeks he is going off to college!! I am going to miss him so much! It is exciting to be getting him ready to go, and the nice thing is that school is only about an hour away so I am sure we will see him often.

So... that was the month of June in a nutshell! I am working on a slide show of our summer vacation at the beach with Ben's birth family... There are too many pictures to share here, but I promise not to leave you hanging for a month before I get it on here. Here are a few "preview" pictures to get you by until I get them all organized:

Other than that, David started at his new school in July, they have a summer program, so its been nice that he has been able to get to know the teachers and some of the kids this summer. He leaves for camp for 2 whole weeks on Sunday, so I have to get him packed and ready to go.

Oh.. and the first night of football was last night...another season is officially underway!!!

Stay tuned for the vacation slide show... I promise to get it done by Friday!!!

Have a good week!

~Vicki