His Life, His Story, & Our miracle.: 2011

Saturday, May 21, 2011

For my SB Peeps!

I just posted on are family blog. Please read! One of are fellow SB families needs some advice/support at this time.
Thanks

Wednesday, February 9, 2011

Read our Interview with the NY Times

Here is a link to the NY Times article we were interviewed for. It has been such a exciting last couple of days! Media Interviews, photo shoots and great news. I feel so incredible blessed to be part of the MOMS study and have surgery while Ty was in womb. It has been so great to see the positive benefits and gives so much hope for Spina Bifida familes. It is great to see Spina Bifida spread across the media. I couldn't be happier to see all Ty's doctors on the TV. Tyson is such a Rock Star!

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.

His Life, His Story, & Our miracle.

A beautiful poem written by my Aunt Debbie for Tyson

Background

Saturday, May 21, 2011

For my SB Peeps!

Wednesday, February 9, 2011

Read our Interview with the NY Times

To read more about Tyson and his family visit our family blog by clicking the link below:

In the NICU, This is a hat they gave him to keep him from loosing body heat.

For more information on the MOMS Study visit the link below:

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Truly inspirational Spina Bifida Families and kids