Hang on while I try to get this out in some kind of coherent fashion.
We have been in the world of PWS for 14+ years. When David was diagnosed 14+ years ago... we were devastated... we were pissed off... we questioned WHY??? We curled up and wanted to die rather than deal with this. But here's the reality of the situation.... PWS was here and not going anywhere... We had 2 choices... curl up in a ball and die... let PWS consume us... and let it turn our lives upside down... OR.... find a way to deal... find a way to make our life normal again... we had 4 other kids to think about..... we needed to figure out a way to survive this... if we didn't... it would mean the end of life as we knew it... and I wasn't willing to give it all up because of a diagnosis of PWS. As I watched my baby struggle to survive... and as I watched him defy the odds... and at some point I realized... IF HE CAN DO THIS..... THEN DAMN IT SO CAN I.... THIS IS HAPPENING TO HIM... NOT ME... I AM HIS MOTHER.... IF HE CAN SURVIVE THAN DAMN IT SO CAN I... WHO THE HELL AM I TO GIVE UP ON HIM.... HE DIDN'T ASK FOR THIS... THIS IS MY JOB... SUCK IT UP AND DO EVERYTHING YOU CAN FOR HIM.
I have been accused of being a "PWS LOVER" before.... and I guess if that means loving my children for who they are.. than yeah... GUILTY AS CHARGED.... but if that means "loving PWS" THEN YOU AVE ME ALL WRONG..
my kids didn't have to struggle every stinkin day of their lives
my kids didn't have to feel the pain of being hungry all the time
my kids didn't have to feel the pain of being different
my kids didn''t have to work twice as hard at everything they do to keep up.
I wish I..
didn't have to worry about every aspect of their lives all the time
didn't have to look into special schools... special programs... special everything for them
didn't have to worry about them outliving me.
didn't have to watch them struggle to do the things that other kids do without even thinking about it.
I wouldn't change a thing about my life or the decisions we have made.... making Ben and Caroline part of our family was probably two of the most defining moments of my life.
I hate what PWS does to my kids... but I can't change it... so... I must learn to embrace it.... to live with it.... to find the good in it.... I LOVE MY KIDS.. and if that means I must accept PWS.... THEN...SO..BE..IT...There are worse things in life... after 14 years of this... I realize that it COULD BE SO MUCH WORSE. I could be visiting a grave every week... I could be feeding a 14 yearold though a tube and changing his diaper... I could be waking up every morning wondering if he will be alive... or not... and how I will survive another Day with him or... worse.... without him.
I have to watch their calories...
I have to deal with some behavior issues..
I have to work to ensure that their futures are secure and that they will have the supports they need.
I will get to see them grow to adulthood.. to achieve goals... to grow into adulthood
I will get to witness their achievements.. and watch them grow.. physically... emotionally... spiritually.. and know that I had a part in something much bigger than me.
I have to work a little harder to make sure that they have what they need in life.
So while I can honestly say I wish that I had NEVER heard the words PRADER-WILLI SYNDROME... I can HONESTLY say I wouldn't change a thing about my life... except to make things easier for David, Ben and Caroline. If it weren't for PWS... I seriously doubt that Ben or Caroline would be part of our family... think about it... why would they be?? ... but for the life of me.. I can't imagine our lives without them... not for ONE... SINGLE.. SECOND.
So... that's the Long and short of it... I wouldn't wish this on anyone... but I also wouldn't change it for a single second.
Saturday, February 28, 2009
Posted by Vicki at 9:26 PM