Staffer Discusses Growing Up with a Brother born with Spina Bifida

The house was silent. My windowless bedroom was almost completely dark, as usual, but it was no use. I couldn’t sleep. None of us could. I had been awake for who knows how many hours, staring blankly at the illuminated stars that had been tacked onto my bedroom ceiling. Waiting.

Think about something else, I told myself. Stop worrying. Any minute now, it’ll be time to get up and go.

But I couldn’t stop thinking. My mind was an abyss of questions as I laid in my snug little bed, wrapped up in two comforters. What if the anesthesia doesn’t work? How long did they say recovery will take? When do I get to see him?

He is going to make it through this surgery.

Right?

I could practically feel the seconds ticking away. I knew now that it was only a matter of hours until my big brother, my only sibling, my first friend, and the most courageous person I knew, would be laid out on a big, cold, clean operating table. Eighteen gruelling hours of spinal surgery and a summer’s worth of recovery time later, my big brother would prove even stronger than I could have imagined. After all, this wasn’t even his first operation.

* * *

I’ve never had to ask questions about my brother’s disability. When I was really small, I just assumed that everyone’s brothers used wheelchairs. Since his wheelchair was all I had ever known, and I had no other siblings to compare him to, it never seemed unusual. And little-kid Hannah was blissfully unaware that there were any problems that came along with his Spina Bifida, the birth defect that damaged the nerves in his legs and has kept him from ever being able to walk or feel them. To me, Nick’s wheelchair was simply how he got around. To be honest, the most I ever thought about it was about how fun it was to sit in his lap as we zoomed down the ramp that led to our front door.

But the difficulties that Nick’s disability created were much more serious than I could comprehend. Countless complications come along with being in a wheelchair. When Nick was a newborn, my parents worried about operations: the day after he was born, he had to have a device surgically inserted into his head to pump away spinal fluid that could collect in his brain. After that, they were so busy with his doctor’s appointments (three a week are needed for a baby born with Spina Bifida) that my Mom wasn’t able to work. Nick needed physical and occupational therapy, and at three months, he started attending the Lee Ann Britain Infant Development Center at Shawnee Mission Medical Center. But it was never just the appointments and the surgeries and the therapy that complicated life for Nick; My parents raised Nick to understand that everyone has a disability. Nick’s was his wheelchair, but not everyone’s was so obvious and visible (after I was born, Nick deemed my disability to be my temper). Having a visible, physical disability that made you look different on the outside meant Nick had to deal with problems a kid with an “invisible” disability, like me, was completely blind to.

My first day of kindergarten was probably the first day I noticed how other people reacted to Nick. As I cautiously walked through the enormous front lobby of Prairie Elementary, I could feel people staring. I slowly began to notice that other kids were turning around just to watch Nick as he wheeled by. I couldn’t spot anyone else using the elevator instead of the stairs, either. And I couldn’t find a single other person whose big brother didn’t use his legs to walk.

What I didn’t know was that though this was my first taste of people treating Nick this way, it was something he had dealt with for his whole life. I eventually realized that every time we left the house, people stared. I noticed the questions from complete strangers, usually little kids who didn’t know any better. I saw the passersby who literally looked down their noses at him. I often found myself wondering why they didn’t they see that he was really a person who just moved differently than they did. How they dismissed everything else about him because they could only see his differences. It seemed that everyone only took note of his least important characteristic.

What a waste, I thought, when he has so much to teach them.

Nick has certainly taught me more than anyone else I’ve ever known.

Nick showed a high-strung little me that sometimes you just need to relax and laugh instead of cry. While on a family vacation in rural Colorado, we decided to head to the local Wendy’s for lunch. It was no surprise to Nick that a little kid approached him with an inquisitive look, but this kid was different: wearing just a pair of overalls with no shirt underneath, he blurted out, “Why a wheelchair?” and scampered off. Yes. Not “why do you use”, not “is that a”, but “Why a wheelchair”. His excellent grammar and fantastic attire have led us to since affectionately nickname him “Lil’ Abner”. But that’s beside the point (though we still laugh about him to this day). Though Nick was initially so stunned by all his redneck demeanor, he was able to laugh about it the whole way home. So I’m actually thankful to Lil’ Abner, because he gave Nick the chance to show me that you shouldn’t always take yourself too seriously, but make the choice to be positive and laugh it off instead.

Nick didn’t just show me that it’s important to laugh. He’s showed me it’s important to persevere, too. I learned never to let anyone underestimate you as he pushed himself all the way from his dorm to Frasier Hall, up the ridiculously steep hills of the University of Kansas’ campus to the college classes that people told him he would never be able to attend.

He showed me how to trust and be patient when I was 13 and we took a family trip to Washington, D.C. While on a tour of the city’s most famous monuments, we took the elevator all the way up to the top of the Lincoln Memorial. After a sufficient amount of awe at the view and statue of Lincoln himself, we decided it was time to head back down, but the memorial had other plans. After discovering that the elevator had stopped working, Nick was fine- no, excited- to get out of his chair and slide himself (with ease, I might add) down all 57 steps of the Lincoln Memorial. Instead of whining about how much this unexpected turn sucked, he told me he was so happy to be able to sit where Martin Luther King, Jr. gave his famous “I Have A Dream” speech. Though I didn’t realize it then, he was teaching me to relax, be happy and trust yourself.

I have known for a long time that I am blessed to have a brother who was different from me. He allowed me to learn things that someone just like me could never be able to teach me, and that’s not an opportunity everyone gets.

I’m always proud of my brother. But I think it was only until earlier this month that I realized just how much he means to so many other people. This November, Nick was awarded the first scholarship ever given to an alumnus of the Infant Development Center. Out of countless graduates of this amazing program, the center chose Nick to receive the honor of their very first “Fund for the Future” scholarship. We were ecstatic to be invited to watch him receive his award at the Tiny Tim benefit put on by Shawnee Mission Medical Center, an annual party and auction to raise money for the children and families of the kids who need to, but can’t afford to come to a place that can completely change their lives for the better.

I was excited to wear the new dress and heels that I’d bought just for the occasion, and the dinner and auction were fun, but the best part by far was watching him roll up the ramp to the stage in the middle of Overland Park Convention Center’s ballroom after all 500 of the Tiny Tim attendees had been told his story. And as I watched them hand him his certificate, I couldn’t help but tear up a little. But it wasn’t until I looked up at the audience before him, who had all risen up to give him a standing ovation, that I (and the rest of my family) kind of lost it. After all the adversity, after all the hard work, after a doctor who told my parents that Nick would never be anything more than a vegetable, I was so honored to literally stand behind him and see a community that would stand with him, just as proudly as I do.