It took a while, now I understand
Just where I’m going
I know the world and I know who I am
It’s about time I show it
To Hannah, these aren’t just lyrics. They aren’t just words. This is her anthem.
This is the sentiment that has pulled her through the hardest and darkest periods of her life. When she can’t catch her breath and feels like giving up, this mantra keeps her from giving up hope.
And there have been many, many times in Hannah’s life when she could have given up hope. But that just isn’t who she is.
Hannah stopped listening a long time ago to what people think. In her experience, they’ve often been wrong. That’s because the people who are looking at her are looking at who she is on paper, and they don’t see what’s right in front of them. Recently, Hannah re-fractured her right femur. If you’ve ever experienced the pain that accompanies fracturing the largest bone in the body, you know it is not an experience for the faint of heart. But Hannah is no stranger to pain.
After all, she has sustained over 160 fractures in her life.The words Osteogenesis Imperfecta mean something to this community. If you asked someone on the street, chances are they couldn’t tell you what it was, but if you ask any Chiver, they’ll immediately start talking about a little girl named Zoe Lush. Hannah and Zoe share this diagnosis, among many other things. Both girls have brittle bones but courageous hearts. They are two of the strongest people you will ever meet.When doctors read about Hannah, they read about a girl who was born with 16 fractures that she had obtained in utero.
They read about a girl who stayed in the hospital for the first 41 days of her life. They read about a girl who got a respiratory infection that turned into pneumonia, and broke 4 ribs from coughing. They read about a girl who loses her breath easily, who uses a pulsoximeter, oxygen concentrator, and nebulizer to accomplish what the rest of us can do by inhaling deeply. They read about a girl with a bone density score of -6 who needs 24-hour care to prevent fracturing or breaking her bones. What the charts can’t tell them is that Hannah is one of the brightest people her age. Despite being homeschooled much of her life because of the danger public school presents, Hannah scores better than most of her peers. The charts don’t mention that she is extremely tech-savvy, that she has taught herself how to use Photoshop and dreams of one day becoming a graphic designer.
They don’t tell you how she plays a guitar that’s bigger than she is, that she is a go-getter but also a girly girl, that she is one of the biggest Beyoncé fans on the planet, and that she has shattered just about every expectation people have made for her since the day she was born. So, the doctors make their assumptions about who Hannah is and how much she can handle, but then they meet her – under 3 feet tall and not even 60 pounds, and they realize their calculations left out something very crucial: her spirit. Her tenacious, bold, and determined spirit, bigger than most people’s who are triple her size, and the doctors realize with a shock that they know nothing, absolutely nothing, about what she is capable of.
This is Hannah’s story. The story of a girl who has listened to people tell her what she can’t do her entire life… and then proved them all wrong.
Hannah’s quick wit and charming personality are infectious, and she and Stephanie formed an instant connection. When Stephanie began asking questions about Hannah’s future and her aspirations, it became apparent to her that Hannah’s dreams were big… but so were her obstacles.
Hannah faces many challenges in her future. The most pressing one is surgery on her severe scoliosis, which has graduated from an inconvenience to now presenting a serious threat to Hannah’s health. Her spine curves inwards, towards her lungs. Because Hannah already suffers from issues with her lungs, this situation is scarier for her than most. She will require frequent trips to the hospital very soon, but her transportation was neither safe nor reliable. The ramp in their wheelchair-accessible van would often get stuck or not work. They were having engine trouble that Valerie couldn’t afford to fix. And because she’s been raising Hannah on a single-parent income, many of Hannah’s belongings were not adapted to her size or needs.
This conversation gave Stephanie an idea. She told Hannah that there were a whole bunch of people that wanted to help, people Hannah had never met. She told her to reach out to the greatest community in the world.
Did you have a similar diagnosis? Tell us your story below.