THE KNOPF FAMILY: Out to win the war.. (on PWS)

Thursday, May 15, 2008

Out to win the war.. (on PWS)

I have picked myself up by my bootstraps and continue the battle at hand.
I have been a mom for 19 years and a mom to a child with PWS for 13 1/2 years. This is not the first time by any means that David has gotten into food... he has been an active food seeker since he was 3 years old. I could write an entire book on the things we have caught him with over the years. I have learned over the years, that I will not win every food battle... he will win some of the time... but I will win the war... I will keep him from being obese, I will keep him from eating himself to death, I will keep him active so that he burns as many calories in a day as possible.. but I have to keep in mind that he is THE MASTER when it comes to sneaking.. he can go into what Dave and I call "stealth mode" and quickly and silently get ahold of something without us knowing... we also sometimes call it
"a drive by"... yes... he wins sometimes.... but what is important is that I win more... He knows he will get caught, but because of PWS he can not stop himself. Who else would eat 2 granola bars on the toilet and throw the wrappers in the bathroom trashcan?

I decided to share that photo with you all the other day because this is our life... every second of every day I am on guard.. our kitchen is locked, but in a house with 9 people, the doors get left open sometimes, food gets left out... this isn't Davids fault, it is ours for not protecting him from it. But to spite that David continues to do well.. his weight is good, he is healthy, he is generally happy, he has friends, he does well in school, and has so much to offer to everyone he meets, he has a kind heart, but he has no control when it comes to food... I MUST BE THAT CONTROL for him.

So... that being said... we keep on keepin' on... and we will win this... I am sure of it.
I will leave you with a quote that I love by Vince Lombardi...

"The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand."

Our Journey With Prader-Willi Syndrome

Our journey with Prader-Willi Syndrome started on December 1, 1994 when our son David was born.
David is our 4th child. We had no idea that our world was about to change forever, that nothing would ever be the same... or what that would even mean...
"Your baby has Prader-Willi Syndrome"
The words seemed to float around the room, like they weren't really meant for me to hear. This couldn't be possible because we already had 3 healthy boys. I had prooved 3 times over that I could make healthy babies! That's what it was... a mistake... they had made a terrible mistake... they were talking about somebody elses baby, not mine. I didn't hear what they were saying... these words weren't meant for me. I looked at my husband who was holding David and he had tears rolling down his face, but he was in control, he asked the questions, he was crying... I'd never seen him cry, not like this anyway. I was just sitting there like a silent observer to this scene. I didn't belong here, this wasn't my life. We were taking our baby home today and they were wrong. I would proove it to them. We walk back to the NICU with David to pack his things from his 10 day stay. His nurse gave me a hug and I collapsed to my knees on the NICU floor sobbing... It hit me like a ton of bricks.. I am the mother of a baby with special needs. Some syndrome called Prader-Willi... not sure how we are going to do this, we pack our baby and head for home.
The firt couple of years were a blur. David was sickly and we were in and out of the hospital with illness and surgeries. There was endless physical and occupational therapy, it took forever to feed him.. he had an NG tube for almost a year and was on oxygen until he was 3. Jacob was born 13 months after David and we were busier than we ever thought we could be. We had 5 little boys and life was good. But we both had this feeling that something, or someone was missing. Then we are told of a baby who has PWS and was in need of a family and we both knew immediately that this is what we wanted to do. So in September of 1999, Ben joined our family at the age of 5 months. He stole our hearts and life was good. We were busy raising 6 boys, everyone thought we were either saints or just plain crazy for adopting a child with PWS when we already had a child with it. Life was good, Life was busy, we wouldn't change a thing.... but something or someone was missing.
In May of 2001 I was put in contact with a family who had a baby girl with PWS. They were making an adoption plan for her and long story short, Caroline Grace Elise came to live with us when she was 7 weeks old. We all fell completely head over heals in love with this baby girl! She was the missing piece to our family. Life is good, life is busy.. Our family is complete.
7 kids, 3 with Prader-Willi Syndrome, maybe we are Saints, maybe we are crazy, maybe we're a little of both! Either way, life is good, and we wouldn't change a thing.

THE KNOPF FAMILY

Thursday, May 15, 2008

Out to win the war.. (on PWS)

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