Portrait: Hannah
My mom received a phone call from the doctor telling her that their little baby girl, their six-month-old who seemed so strong and healthy, had suffered a stroke. What did that mean? Well, to put it plainly, the news my mom received that day was that Hannah would likely never walk, talk, or reach adulthood.
A little bit about my baby sister
My younger sister’s story starts quite literally at the beginning. I remember her first six months and how fun it was to be a “mini mom,” to have someone to care for, dress up, defend, and look out for. To an eight-year-old, there’s not much better.
Strangely, what I don’t exactly remember turned out to be the most significant day of them all. It’s a day that only lives in my own memory because it’s been told to me. My dad was a pilot for the United States Air Force, and he was being sent to the United Arab Emirates as the Commander of Al Dhafra Air Base and the 763rd Expeditionary Air Refueling Squadron. This assignment was a year long. “Familiarity” with my dad leaving for months on end didn’t mean it was easy to say goodbye. I guess I just always knew the exciting day of his return would come. So, as a resilient little kid, I was devastated, but I was ok.
That was just my tiny perspective. What I didn’t know or comprehend was that the exciting day my dad took command in UAE for his year-long assignment was also the scariest day of his life.
Baby Hannah’s diagnosis
My mom received a phone call from the doctor telling her that their little baby girl, their six-month-old who seemed so strong and healthy, had suffered a stroke. What did that mean? Well, to put it plainly, the news my mom received that day was that Hannah would likely never walk, talk, or reach adulthood.
Even more, she might not live much longer. So that was it. My dad, with an obligation to his country and his command, was half way across the world knowing that the sweet goodbye he had with his daughter might, very well, have been his last. And my mom, with four children to care for, was alone. It was a tough time.
Hannah’s resilience
But, I find significance in skipping forward twenty-three years later. That little rugrat is still with us. Though it took a little longer, she learned to walk and, my goodness, did she learn to talk. She truly is the greatest of miracles. Hannah’s life certainly isn’t easy; she experiences lots of challenges. She has frequent seizures which means she can never drive a car; she can’t feel or control the right side of her body, so things like riding a bike or playing an instrument are out the window.
But probably more debilitating are the mental and social challenges she faces as she wrestles with aphasia. Her anxiety regularly overwhelms, her migraines frequently paralyze, and her plateaued social development often frustrates.
With all this being said, she is an absolute trooper. She exhibits more strength every day than I hope to ever achieve. She has the purest heart of gold, often shown through her excitement for others’ accomplishments and achievements.
A family’s grateful perspective
I am unbelievably grateful that she is my sister. I am also grateful for the care she has received in her life, and wish that that care extended beyond her childhood years. Hannah’s abilities are limited, but luckily for her, she has a family who loves and cares for her every single day. Not everyone is so lucky.
Since many of us don’t experience these challenges that result in mental and physical changes, it is even more important to show the world Hannah’s journey.
Often Hannah’s greatest struggle lies in the fact she doesn’t “look” very different from the rest of us, and consequently people are often impatient, rude, or downright offensive.
I’ve long searched for ways to be Hannah’s advocate. From the time she was born I’ve looked out for her and helped her hurdle her difficulties.
My aspirations
Now that I’m older, I’ve realized I can have a more profound impact on the world. I’ve decided that with my limited resources, the best way I can honor Hannah is to use my talents and skills as a filmmaker to draw attention to such populations. I aim to make people understand, to make them aware. Taking baby steps, I’ve written a feature script inspired by Hannah and I am doing my best to achieve this impossible task of getting it produced.
I want to show the world a very real representation of how life is impacted for those with brain injuries and their families who love them.
Films prove an excellent example of drawing social awareness and inspiring others to participate in and demand change. I believe that with more exposure will come greater understanding and greater support systems and care for people like Hannah. In essence, greater support and funding equals greater change.
Uniting for change
That is why I wanted to share Hannah’s ongoing story of triumph, struggle, achievement, heartache, and always continual determination. Because sometimes I see my baby sister and feel that no one–not even I–understands. I am beyond ecstatic to know that there are great people in the world campaigning for great change that affects a population that so frequently falls on the fringes. I thank you, my family thanks you. But most importantly, my sister thanks you.
Follow Kirstin on social media: @kirstibek