Friday, October 16, 2015

Faces of Spina Bifida: Meet Alex and Jeremiah!

Meet Alex
6 years old

How does Alex describe himself: Funny

"Alex is incredibly shy but once he comes out of his shell, he's such a silly boy. He LOVES being goofy and getting others to laugh too!!"

How does mom describe Alex: Resilient 

"Besides having Spina Bifida Alex was also born three months early, along with his twin brother, weighing just a pound and a half. What he's had to come through in just six years is more than most people have to in a lifetime. He spent three months in the NICU, undergone 8 surgeries, casting, daily injections, CPAP machine, etc. Every time he's had to deal with "one" more thing, I think--how is he going to cope? But he surprises us each and every time and truly takes it in stride. "

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

"I wish I would have known it would all be okay. I was devastated during our pregnancy hearing something was wrong with my baby. I feared terrible things and was even told by the doctor Alex would have limited potential. The worry and unknown were agonizing. Oh and I remember believing that his ability to walk or not would determine his (and our) happiness. Ha! The truth is our world did change drastically, but in many beautiful ways. He would also soon teach us that someone moving around in the world in wheels absolutely has the ability to be happy, and also that we need to get out of the way.

Yes there are some challenges and we have learned a lot along the way. Alex is FULL of life and love (and silliness) and we can't for a second imagine our life without him in it!"

Meet Jeremiah
5 years old

How does Jeremiah describe himself? Nice

What does Jeremiah most like about himself?

"I'm a great breakdancer!"

What makes Jeremiah awesome?

"People like to be around me. I go to a lot of dance marathons to raise money for Riley Hospital for Children. I hang out with kids in college and high school. I like to spend time with them!

What mom said:

"Jeremiah is a funny kid! He is always laughing and making other people laugh. He has a lot of friends of all ages. He is always exceeding my expectations. Yesterday, he walked up a steep hill with his crutches (he normally walks with a walker) so that he could get to the pond. I didn't think he would be able to do it! He is also very smart. He taught himself to read when he was 3, just by listening to his sister's lessons. He loves to read, especially books about dinosaurs and volcanoes."

What do you know now that you wish you had known when you first heard the SB diagnoses?
"There will come a time when you forget about the diagnosis and just see the child. I remember introducing my family to a group of people shortly after Jeremiah was born. He had just had shunt revision surgery, we still were using a heart monitor. I was paranoid that something bad would happen and we would end up back in surgery. Anyway, I remember introducing myself, then my daughter, and then feeling like I had to go into a few details about Jeremiah and Spina Bifida. I remember thinking, "When am I going to be able to separate Jeremiah from his diagnosis and stop thinking of him as 'my child with Spina Bifida?'" I don't know exactly when that happened, it was probably fairly soon after that introduction. When Jeremiah was two, I enrolled my daughter into a homeschool co-op, and placed Jeremiah in the nursery. I forgot to tell the director of the co-op that Jeremiah had Spina Bifida. It really didn't effect anything in the nursery, and I just didn't remember to talk about it. Now we have developed a new normal that may be different from a lot of families. Yes, we do medical procedures and medication on a daily basis, but it doesn't define our life or Jeremiah. We have lots of days where I don't even think about his diagnosis. We are free to enjoy Jeremiah for the funny and analytical kid that he is."

"Another thing that really helped me was that I grew up with a girl with Spina Bifida. My friend Sarah and I went on a mission trip to Honduras together. We played together. One of the first things I thought when Jeremiah was diagnosed was that my son would be like Sarah, and that is a great thing! I know that many parents aren't able to have that experience, but I encourage them to get to know some of the adults in the Spina Bifida community. They are an excellent resource!"

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