A beautiful poem written by my Aunt Debbie for Tyson
Tyson Jared
Tyson Jared little warrior from God above
You are destined for His perfect love
He kissed your tiny head and said
Your mom and dad will guide and
I will always walk beside you
Each moment is gift
Each breath is from above
Your life is a blessing
A miracle of his love
Sleep now little one rest in His perfect peace
You are a slice of heaven sent here for us to love
Tyson Jared Thomas was born May 5, 2009. He has myleomeningocele Spina Bidia L5-S2. He also had a very severe Charii I brain Malformation. He is truly a miracle and an angel from above. We had surgery in utero on Feburay 26, 2009 and lived in San Francisco for 4 months until he was born. We our enjoying journey with him. Feel free to contact us if you have questions about spina bifida, jessicamadsen@hotmail.com
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.
Truly inspirational Spina Bifida Families and kids
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