Learning the Dance of Parenting a Child With a Disability

Do you know 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 your baby in arms. However, that reality was thrown out the door for me when the nurses paused, looked at my new baby and all medical professionals 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.

Queue 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.

Currently, 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 becomes effortless with each day and each new encounter.

Sebastian was born with Treacher Collins Syndrome. He has traveled more than 12 times to Seattle Children’s Hospital for various surgeries at their Craniofacial Clinic. Miracle Flights has provided free commercial airfare for each flight. 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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