My headstrong daughter was born, and the great production began with her “code pink” at birth, which brought about the entire floor rushing to save her life. We spent three long months in the NICU awaiting a diagnosis, only to discover that our child had a very rare diagnosis of Congenital Central Hypoventilation Syndrome (CCHS) — less than 1200 in the world — and her future would always involve a trach and ventilator.
We brought her home, and no matter how prepared we thought we were, we were wrong! She had mastered the art of holding her breath, and due to her disorder, this meant she was coding and could not recover without emergency intervention. We would push air into her lungs with an ambu bag 10-20 times a day. I awoke every morning and would call my mother to tell her for certain that today was the day my daughter would die!
Then one day we were graced with an experienced nurse who changed our lives. My daughter coded and she immediately handed me the ambu bag and said, “Go, you’ve got this!”
Once the crisis was averted, we began to talk and she told me that nursing care was uncertain. It was her job to give me the tools to make sure my daughter would grow up. I was flabbergasted, but I shared my fears and grief for all that would never be. She boldly asked me what it was that we could never do, and I stated I can’t cuddle my child. She reached into her pocket, pulled out a roll of tape and a pair of scissors and within two minutes she was rewiring my child’s circuit and I was cuddling my little love. As I basked in the love of my sweet little girl she firmly, but politely explained to me that,
“This is it, this is what you were given and you can either make it great or close off your heart.”
This angel dressed as a nurse was exactly what I needed, and what we needed as a family. It was a life-changing experience; this was the day I decided I need to change my thought process. From here on out I would not longer focus on what we can’t do but on HOW WE CAN do it!
We had always dreamed of talking my child to Disney, but she was coding constantly. Despite all the naysayers, I played with ideas until I figured out a way to carry the vent on my back and Cassidy in the front in a baby carrier. The tears rolled down my eyes while I watched the fireworks with my baby on my chest. We did it! We made it work and the feeling of satisfaction still fuels us forward ten years later.
When she desperately wanted to swim in the pool staring at her from the backyard, we found a way to do it. We worked up her stamina for capping her trach, and now she swims 20 laps with the greatest of ease.
As parents of kids who are medically fragile, we are always faced with new diagnoses and new issues. Whether it is a new intellectual challenge, a task that seems impossible, or a new medical hurdle, as parents it is in the best interest of our children to take it in stride, never flinch, and figure out a way to leap this hurdle. Don’t get me wrong — I spend many a night crying in the shower as the roller coaster of a ride throws me loops and twists. But the gift this nurse unwittingly gave us is the key to my daughter’s successful future.
Asking HOW she can do things instead of questioning whether she can will carry her through her unconventional life and give her the strength to face all that will come with life as a young woman with medical challenges. If we can keep this motto alive in our home, I hope that someday she will show the world that not only can she do it, but she can also do it better than most, because she sees no obstacles — only opportunities.