Vote

November 04, 2008

Vote

I know everyone's attention is on the election today. We cast our ballots absentee this year. I wish I could have had the experience of standing in line and casting my vote. What an exciting election! Whatever the outcome, I hope and pray that families of children with special needs can see positive changes in health insurance coverage and exclusions. And that more money can go towards research for MPS and other diseases that are devastating families around the globe.

Comments

val said…

it does really bother me that when tragic things like health/injury issues happen to families they not only have to deal with the stress of that but also with how they are going to afford it. it doesn't seem right!

November 4, 2008 at 9:10 PM

Becky said…

as a taylor grad and mom of a little boy with a genetic disorder, i can empathize with the challenges of health insurance coverage, exclusions and the seemingly endless bills that pile up as we seek the best treatment for our kids - and youre right, whatever the outcome, i'm hopeful that research and coverage will increase.

i am so impressed with your honesty and your bravery as you continue on this journey. my heart goes out to you as do my prayers.

becky peterson

November 4, 2008 at 9:57 PM

Welcome to Holland

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.