Thursday, March 22, 2012

Hayden school project documentary by Cecily on Spina Bifida

What an honor to have our friend Cecily choose Hayden to be the subject of her school project.  Can you believe she did all this and she is only in the 8th grade!?

She did a great job and I am attaching an edited version of the Q&A that she did for her interview.

1.) What do you think was the hardest part about watching Hayden be in the hospital?

Hayden was born with the most severe form of Spina Bifida affecting many of his major organs such as his spine, brain, bladder, bowel, feet, eyes and essentially everything neurologic.

The hardest part was not being able to hold him when he was born.  When he was born, I knew I wouldn't be able to hold him because he had had spine and brain surgery.  He had to lay on his stomach and I couldn't see him or hold him in my arms for 5 days after his birth.  He was in the hospital for 5 more surgeries during the first year of his life.
2.) If we didn't have all of the amazing technology we have today, how do you think this would have affected your life?

1.  His Brain:  Hayden would have died shortly after birth because his brain fluid would have continued to build in his head making it large and extremely painful.  His Spina Bifida caused Hydrocephalus.  There are terribly scary pictures on the internet.

2.  His Spine:  He would have gotten an infection in his spine because it was on the outside of his body.

3.) What do you think you would be doing right now if Hayden hadn't survived?

I would be very sad but I would continue to be a mom to my daughter Hanna, a wife, a sister, and a daughter of God.

4.) Can you tell me Hayden's story?
I will copy the link to the write up and you can take what you like from it.

5.) Being a sister of a child that lived in the hospital, I know how hard it is to see them struggling, but what was it like as a mom?

I felt helpless in protecting him and had to rely on my Faith.  I also felt that I had done all I could do in providing him with the best medical care I could find.  We were part of 7 national studies and went to see the best Spina Bifida Doctors in the world in San Francisco.  Ultimately he was born here, in Austin, with one of the best Neurosurgeons in the world.  

6.) What were you thinking those first couple of days when he was in the hospital?

I cried, I prayed and I was comforted and visited.

7.) Do you ever have those moments where you just wish everything would stop for a while? 

Never had that feeling.  But, I do look back at the first 2 years of his life and feel like they were a whirlwind blur of medical appointments.  Each year while he has been healthy, things have calmed my daily anxiety.

8.) Do you ever wonder what it would be like if Hayden wasn't the way he is?

We would be living a "normal" or "ordinary" life.  He makes it extraordinary.  The best way to describe Hayden it magnetic.  He draws everyones attention.  He is kind, happy, respectful and loving.  I love him for his charming character and wouldn't change a bit of that.  However, I do get a little sad when his little body can't do what he wants with his friends.  But we are working on getting him more mobile.  We wouldn't have had the awesome opportunity to meet so many special people and feel the kindness of strangers.

9.) Can you explain how you were feeling after you crossed the finish line in the marathon you ran for Hayden?

Physically and emotionally overwhelmed to tears.  One of my greatest, happiest accomplishments not just for running, but for advocating for Spina Bifida and all the loving support I got.

10.) How are you able to stay on top of everything?

Preschool provides me a great break to have a "normal" life again.   We also get a lot of assistance through Medicaid.  We also have great private insurance, but we couldn't do everything that we NEED to do without the tax payers help.  Once our private insurance maxes out each year, Medicaid picks up the rest.  He gets 6 therapy sessions per week at $100 per session.  He gets prescription food and several pieces of costly equipment over $30,000 (2 wheelchairs, stander & walker).

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