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
Saturday, February 21, 2009
Caroline and Bear
Caroline and Frosty goin' for a walk
A girl and her wheelbarrow... it's a BEAUTIFUL THING!
Posted by Vicki at 6:24 PM
Tuesday, February 17, 2009
You might want to go to the bottom of the page and turn off the music I have playing first... that way you can appropriately hear the screams as we hit the water!!!
Posted by Vicki at 10:02 PM
Sunday, February 15, 2009
Before the plunge... we had some time to kill... so Dave thought it would be funny to play around with the bow tie...
Pictured in no particular order from the PLUNGE... the water was 36 degrees.. the air temp was about the same... Dave and I both went in up to out necks... it literally took our breath away.. you couldn't inhale it was so cold and as we headed back to shore it took everything we had to get our leg muscles to work correctly... FYI.... Jake went in not only once.. but TWICE!!!!
Our photographers/ babysitters for the day.... Aric and his girlfriend Kiersten.. this was taken back at our friends John and Lori's house... Lori had a HUGE pot of chowder and HOT grilled Rhuebin sandwiches ready for us when we got back to their house for lunch!!! Thanks Guys!!! Lunch was great!!!!!
A HUGE THANK YOU TO EVERYONE WHO SUPPORTED US AND SPECIAL OLYMPICS!!! WE WILL BE BIGGER AND BETTER NEXT YEAR!!!! A SPECIAL THANKS TO TEAM VIKING...
Posted by Vicki at 10:18 PM
Saturday, February 14, 2009
Stay tuned for pictures and video tomorrow afternoon!
You guys all ROCK!!! Team VIKING has raised over $2500.00 for Special Olympics CT!!!
I am so pumped up!!! This is going to be a BLAST!!!!!!!
If you are in the area... tomorrow at Ocean Beach... 12:00pm.... come on down and cheer us on!!! We need all the cheering we can get!!!!
Posted by Vicki at 5:42 PM
Sunday, February 8, 2009
Thanks Melody, Tracy, Matt, Shawn, Brian and CREW for letting us hold a 50/50 raffle to benefit the Penguin Plunge next Sunday!! You guys are the BEST!!! We reaised a ton of money!!
Stay tuned for pictures next weekend!!!! Love you guys!!!!!!
Posted by Vicki at 3:55 PM
Thursday, February 5, 2009
Tuesday, February 3, 2009
Sorry Bloggies... January just has had me in a funk. We haven't had a full week of school without interuption either in the form of a cancellation, Delay or early dismissal since Christmas break and the kids will be on February Break for some 11 days starting next Friday!! I Need a week on a beach somewhere... anywhere.. I am not picky... I just need to bake in the sun and swim in the surf.
Speaking of swimming in the surf... Next Sunday February 15th... I will be diving into thw icy waters of Long Island Sound to benfit Special Olympics.. if you are so inclined you cna make a donation to Special Olympics in support of me at:
Please pray for warmer weather than we have had!! I promie LOTS of pictures!!!
Love you all....
Posted by Vicki at 8:06 PM