Sunday, October 11, 2015

Faces of Spina Bifida: Meet Arwen and Kyle!


Meet Arwen
5 years old

Describe your daughter in one word: Sassy

What does Arwen most like about herself? 

"What she most likes about herself is that she is happy."

What makes your daughter awesome?

"What makes Arwen awesome is that she takes everything that is thrown at her with courage and strength that would put most to shame. There is a real joy within her that trials can't touch."

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

"I wish I would have not gotten lost in the scientific part of the medical diagnosis and concentrate on how beautifully and wonderfully she was made."

Visit the family blog for more about Arwen




Meet Kyle
7 years old

Describe your son in one word: Conquering

What does Kyle most like about himself?

"Kyle is selectively verbal, so his current answer to what he likes most about himself is "iPad". Hee Hee."

What makes your son awesome?

"My kid is awesome. He has been through 35 surgeries and counting. He faces each challenge and meets it. His language skills far outweigh what he is able to express, and his sense of humor is amazing. He is nothing short of inspirational. He is not only resilient, but he takes obstacles and bounces off of them, incorporating the challenge into his skill set. He loves with his whole body and just floors me with his smile."

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

"I am a parent of a child with SB. I know now that my gene mutations can carry a role in causing SB, and I truly wish that I had known that before I became pregnant with Kyle. I wish I had known that before I was told there was nothing I could do and had my tubes tied out of some kind of obligation to society to not have another child with high medical needs. I wish that when I first heard the SB diagnosis that I would've been met with compassion in the hospital and not the option of termination. I wish that termination of pregnancy was only mentioned if the parents asked for it, and not presented by medical staff as an option. I wish someone would've told me how incredibly different my life would wind up, but not in the ways I ever imagined."



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