When a Kid with EA/TEF Finds Courage…

by Jan 4, 2018Advocacy, Special Needs Parenting4 comments

Different Dream is pleased to welcome today’s guest blogger, Lori McGahan. Lori is mom to a son, Brandon, who lives with EA/TEF, and she’s the founder of EA/TEF Awareness Month. Lori’s first EA/TEF Awareness Month guest post at Different Dream appeared in January of 2011. Today, she shares an update about how life with Brandon is progressing.

When a Kid with EA/TEF Finds Courage

In October, our son Brandon said that he wanted to do the Spartan Kids Run at Fenway with his classmates. Of course, my husband and I had a lot of fear and trepidation as to whether to allow Brandon to participate given his complex medial history of EA/TEF and tracheomalcia. We were also a bit fearful that he may become overwhelmed due to sensory processing and gross motor deficits. As parents, naturally we did not want our child to fail, but we also knew we had to look beyond our own fears and allow him to spread his wings and find himself.

As the day of the Spartan Kids Race grew closer, our son grew more excited. For the next several weeks our house was a chorus of “You can do it,” “We are so proud of you for taking this challenge on,” and “You will be amazing in everything you do!” Brandon’s excitement fueled our excitement which found us living in the present versus worrying about the future. What an amazing feeling such a positive outlook and challenge can have on a family.

“Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.”

Before we knew it, race day was upon us. We put Brandon on the team bus and again told him how proud we were of him. We reminded him that it is not about winning but trying your best. As the bus rolled out, my husband and I sat in our car, and all those fears and worries came back for the next several hours. Questions flooded through our minds.

How is he doing?
Did he have a meltdown?
Do you think he finished?

When the bus rolled back in, we anxiously rushed to greet Brandon and hear all about his day. He was tired and dirty, but the smile on his face and the glow in his eye said it all as he held up the Spartan medal around his neck.

How does a kid with EA/TEF find courage for the Spartan Kids Run at Fenway Park? Lori McGahan tells her son's story in today's EA/TEF Awareness Month post.

He was so excited to tell us how he came in seventh in his group and how some of the obstacles were tough, but he didn’t give up. Our hearts swelled with pride and inside we cried!

Our son, who had been through so many obstacles and challenges from birth, just completed the Spartan Kids Run! He had the courage to face his fears and his obstacles. That day, we saw our son grow as an individual. As his parents, we did too.

“The miracle isn’t that I finished. The miracle is that I had the courage to start.”
John Bingham, No Need for Speed: A Beginner’s Guide to the Joy of Running

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By Lori McGahan

Lori McGahan lives in Massachusetts with her husband Brian and son Brandon. She’s a Division Administration Manager for a human services agency and is working on a degree in Business Administration. Brandon was born with a series of birth defects referred to as VACTERL Syndrome, including tracheo-esophageal fistula (EA/TEF). Brandon has also been diagnosed with sensory processing disorder, dyslexia and anxiety. For more information on EA/TEF you can visit the Bridges of Hope website. Lori and her husband, started the EA/TEF online awareness campaign, Color It Periwinkle, in 2018.


  1. Jolene

    Cheryl, thank you for your encouraging words to Lori. Letting go is so hard for parents raising kids with special needs, isn’t it?

  2. Jolene

    Thank you, Adelaide!

  3. Adelaide Dupont

    And I think of another time when someone found courage in Fenway Park – it was a man called Greg and it was a concert of the Grateful Dead in the 1990s.

    Brandon is a Spartan Kid now!

  4. Cheryl Blinston

    Good job Momma in letting go. It is so hard when we are their advocates to let go a bit ourselves. It sounds like he did great and is ready for more adventures!

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.



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