“Do you remember what it’s like to have a full-term pregnancy with no issues along the way? The belief is that you’ll be home in a few days with baby in arms. However, that reality was thrown out the door when the nurses paused, looked at my new baby and all had concerned looks on their faces.
I took a Step-Back.
There were moments of fear, stress and sadness.
I took a Step-Back.
Doctors came to our bedside and tried to explain what was happening to our child. He really was just a healthy baby boy… he just had a few airway issues. He just had a few hurdles that we needed to get through.
I took a Step-Back.
The bones in his face were causing airway blockage. There was even a point in the hospital where he stopped breathing and a nurse on duty came to the rescue just in time to stabilize him.
I took a Step-Back.
He was intubated for a while… and a trach was placed.
Cue the change in music tempo now…
This is when I could choose to continue to Step-Back and let my mind be blown by all the inconceivable possibilities… or when I could choose to look at each medical intervention as a Side-Step.
The Side-Step—Is when you choose to put faith in the doctors and nurses caring for your child. When you choose to open your mind to the possibilities that there is hope for your child. That with medical interventions, he can grow to be a happy, healthy strong boy.
Tentatively, I began to Side-Step.
A g-tube is placed in my child’s stomach and attached to a feeding pump.
Again… I Side-Step… because my child can now get proper nutrition without compromising his airway.
Frequent flights are needed through the years from Texas to Seattle Children’s Hospital for surgeries and treatment.
With more urgency in my movements, I Side-Step… because there is a window of hope through organizations like Miracle Flights, that provide free commercial airfare for families traveling to receive distant medical care.
My child will need 11 surgeries before he turns 8 years old, all with the focus on improving his airway and quality of life.
I Side-Step with ease now… because I take him to the top doctors at Seattle Children’s Hospital and Miracle Flights continues to provide free airfare.
Present Day — My son loves Star Wars and wants to be a Sith and create his own planet.
With a smile on my face, I Side-Step… he’s an amazing boy. He’s healthy, strong and doing everything little boys his age love to do. (I can’t be blamed for his love of the dark side.)
Through the years… I have learned to look at each medical issue and intervention as a Side-Step… a new way to navigate through life. I’ve become good at this dance… and I’ve found that I’m a natural Side-Stepper and I don’t use the Step-Back move as often. My grace on the dance floor becomes effortless with each day and each new encounter.
To all the parents of children with special needs–I’m sure you never thought about being a professional dancer. But… because you choose to lead with the Side-Step… you dazzle on the dance-floor of life!
My dear… you are indeed a professional dancer.”
This story was submitted to Love What Matters by Kathy Roller. To submit your story, click here. For our best love stories, subscribe to our free email newsletter. Young Sebastian was born with Treacher Collins Syndrome. His mother inspired this article, with her positive outlook on life, their medical journey and hope for Sebastian’s future. To find out more about Miracle Flights and how to request air travel, visit www.miracleflights.org.
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