MORE THAN A DIAGNOSIS
Written by: Patricia Geurds, a FOXG1 caregiver
Our family welcomed Kinsley the day after Christmas in 2013. Her big brother and three sisters cuddled her in their arms with unconditional love. She completed our family and we looked forward to all the wonderful things awaiting her.
Unfortunately, at two months old Kinsley began turning blue and had difficulty breathing. After being admitted to the Children's Hospital a battery of tests discovered she needed surgery to repair her Laryngomalacia. The doctors still weren't sure why she turned blue but discovered she was Microcephalic. This would be the first of sixty procedures/ surgeries to come.
Despite five codes, spending 1/3 of her life in the hospital, and most recently four days on life support, her indomitable spirit continues to carry her through. Leading specialists across the country utilizing the most advanced technology and procedures continued to search for a diagnosis, the essential first step to a cure. To date, twenty-one distinct disorders have been identified with each manageable. Defying medicine, logic, and reason the consensus was, “She is one of a kind with an illness and conditions, or perhaps a disease that has yet to be identified.”
A thoughtful doctor once said, “Most children’s stories are already written, but Kinsley will write her own.” His optimism gave me the resolve to keep believing anything is possible as I embraced the uncertainty of her future. Sometimes answers don't give you the outcome you expect. With a path yet to be traveled; there can be no limitations.
I wasn't always this sanguine. In the beginning, it felt like I was strapped into a roller coaster, hopelessly clutching the guardrail with my eyes closed waiting for the ride to end. Soaring the peaks, plummeting to the bottom, twisting and turning often upside down, while screaming,” Stop, please get me off this ride.”
Through these years I’ve learned to be grateful for the peaks and strong through the valleys, certain they were temporary and we could get through if we just held on a little longer. As frenzied as it is I don't want this ride to stop. That reality, one without Kinsley, I could not bear.
She resembles a china doll with porcelain skin, brown wavy hair, and huge blue eyes. Her smile is only erased by pain. Her petite frame might signify fragility, but her strong will and fighting spirit rival that of a heavyweight boxer. Her body has been through more than most people would endure in three lifetimes, yet she continues to be happy and full of love. Her contagious laughter and unwavering patience have been stealing hearts while redefining what it means to be a complex medically fragile child. What once felt like a lesson I didn't need or deserve has turned into my biggest blessing which I am beyond grateful for.
Last November we received her diagnosis. Fox G1. Bittersweet news that finally ended our quest for an answer. FoxG1 is her diagnosis, but Kinsley is so much more than a brave little girl traveling in a wheelchair with a broviac, her mofos, and frequent medication intact. She is a bright light and inspiration to so many.
Often people ask me if she can talk. The answer is, “No, not with words.” However, our language is much more profound. The way she speaks through her eyes and smile says more than I ever could.
Being the mother of a child with a rare disease often makes you feel like you are living in an alternate universe. Trips to the park and playdates exchanged with multiple therapy sessions & endless doctor appointments. We no longer vacation at the beach; rather we go out of state to hospitals for treatment. Many challenges, but the sweetest triumphs. Sometimes in life, all you have is hope; oftentimes Hope is all you need.
