Imagine that the first time you ever blew out your birthday candles was the day you turned 6 years old. Then, imagine later the same year, you were finally able to speak your first words in Kindergarten. These are just two of the accomplishments my daughter, Keira, has made in recent years, and they are milestones marked on a very long road.
As Keira’s mother along this winding and sometimes bumpy road, I have worked through our journey together by writing. And although my writing has taken many forms, I am often reminded to write what I know. Well here is what I know: my soon-to-be 8 year old daughter is my hero and my inspiration.
Now a fiery, petite redhead, who is as curious, adventurous, creative, and intelligent as any other little girl her age, Keira was born with a rare genetic syndrome called Nager Syndrome (Nager acrofacial dysostosis). My husband and I were told the odds were about one in a million of having a child with Nager’s, and well, we won that genetic lottery! In all seriousness, however, she has been a blessing beyond belief, and I am grateful for having won that genetic lottery.
Nager Syndrome causes physical anomalies to the face and limbs. Keira was born with some variation of most of the anomalies associated with Nager Syndrome, such as, shortened forearms, missing thumb, underdeveloped thumb, fused elbow, moderate hearing loss, and the biggest anomaly: a severe recessed lower jaw which was fused due to a condition called boney ankylosis. Just after birth, Keira had to have a tracheotomy to manage her airway, as well as a feeding tube placed for feeding. Those were the first two surgeries in what would become a long list of surgeries to help correct her thumbs and her jaw.
On July 8th, 2014, two days before Keira’s 8th Birthday, she will undergo her 15th surgery. She will not complain or throw a fit to protest going to the hospital. What she will do, however, is confidently walk into pre-op, be silly with the doctors and nurses, and then give her dad and me a hug as she walks down the hall to surgery without out us. And she will go with a smile on her face. At 8 years old, she will have more courage than an adult. And that is why she is my hero.
She has grown up only knowing doctors monitoring her various conditions, surgeries causing pain, nurses soothing the pain, and therapists and teachers encouraging her along the way. All she knows is adults and kids pointing, laughing, whispering, and wondering what is wrong. They almost always feel sorry for her. But at home and within her circle of doctors, teachers, and therapists, all she knows is love and kindness, encouragement to continue on, and how proud all of us close to her are. Despite her physical differences, all I see is a beautiful, vibrant, kind, smiling, talented little girl, who is as normal as any other little girl waiting in line eagerly anticipating the next showing of Tangled or Frozen. From the moment she was born, she has faced the world head on. The positives balance the negatives, and each day she shows the world what she can do.
A few years back, after one of her surgeries, I stood at the foot of her bed in the pediatric ICU and marveled at how strong she was. I admit, the tears began to flow as all the memories flooded me from the adversities that she has overcome. Keira has done so many things that we were told not to expect, and she is still impressing us with her passion for learning and fearlessly showing the world what she can do. That surgery was one of the most complicated surgeries she had to endure, and somehow through all the pain, she looked at me, gave me a thumbs up, and smiled at me. I knew she would be okay. I remember thinking then how this marvelous little girl was my hero.
As a parent, you are the one who is supposed to teach, inspire, and encourage your children to grow. It is no different raising a special needs child. What most people fail to realize is how much these children teach, inspire, and encourage us as parents to grow. Keira has done this to me. She does not give up. Instead, she keeps fighting, trying, and doing things until she has mastered any challenge in front of her.
A hero is admired. A hero inspires. A hero is brave. A hero does not give up. The very definition of hero can be found in my daughter, Keira. She goes through life being admired, inspiring others, showing what it means to be truly brave, and never giving up. Does she know this? Someday, she will, but for today, she will be a little girl who wrestles with her brothers, plays dress up with her little sister, gives Eskimo kisses to her daddy, and picks flowers for her mom. Today, she will be the perfect little girl she was born to be, and the rest is just part of life, her life.