Thursday, October 08, 2015

Faces of Spina Bifida: Meet Quinn and Micah!


Meet Quinn
17 months

Describe your son in one word: SUNSHINE

What do you know now that you wish you had known when you first hear the SB diagnoses?

"I wished I had known that so many doctors are not up to date with neural tube defects (in our case Spina Bifida). They give you textbook information from 30-40 years ago. My husband had an older brother diagnosed with SB and a younger sister born with SB, over 40 years ago. Both his siblings died very soon after they were born. That is what I knew of SB and having a specialist tell you that they are sorry and there is no hope - is crushing. It is hard to have hope and keep your faith alive and not be worried and scared, when you receive this information. I really wished that doctors and specialist had the proper information for individuals at diagnosis day - I would not waste my time and thoughts on worry and fear, I would just educate myself and family and move forward with love, hope and excitement for my little ones arrival.

When we left the hospital to finally go home, we got into the car, started it, the radio was silent for a moment and you could hear my husband and I take a deep breath, then all of the sudden the song: “Here Comes The Sun” from the Beatles started to play."

Here comes the sun, here comes the sun
And I say it's all right
Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
And I say it's all right
Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here 
Here comes the sun, here comes the sun
And I say it's all right
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it's been clear
Here comes the sun, here comes the sun
And I say it's all right
Here comes the sun, here comes the sun
It's all right, it's all right


"That’s his song and we sing it all the time. And you know what? It is, all right…"

What makes your son awesome? 

"He competes our family, he holds us together with so much love and light, and that is awesome."



Meet Micah
10 years old
Describe your son in one word: Adventurous 

What makes your son awesome?

"Micah is so awesome because he loves life!  He makes everyone smile.  He causes people to pray more which in turn brings them closer to God.  He wants to be treated and do whatever everyone else is doing.  He does not let his disability bring him down.  He continues to teach us how to just love life and all it has to offer."

What do you know now that you wish you had known when you first heard the SB diagnoses?

"I wish I had known someone with SB so that I would not have been so scared."




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