The lessons I learned while raising a child with EA/TEF have been many and varied. That’s to be expected since our son was born in 1982 with esophageal atresia (EA) and a tracheoesophageal fistula (TEF), two conditions that left him unable to swallow and required immediate surgery. Many of the lessons came about as a result of the surgeries and invasive procedures he endured between birth and age 5. Other lessons came later as he became more independent in adolescence and adulthood. I encourage you to use these ten lessons as a springboard for considering what you’ve learned as well.
This Year, We Can Rest in the Sacredness of Small Beginnings
As the New Year begins, we are often bombarded with messages encouraging us to aim high, make big resolutions, and do more. But as parents—especially those navigating disability—this approach can feel overwhelming. Instead of striving for lofty goals, what if we embraced the sacredness of small steps and new beginnings? What if we allowed ourselves the grace to parent differently—in a way that meets the unique needs of our families and honors the season we’re in? For many families like mine, Sunday mornings don’t look like they “should.” We are navigating multiple invisible disabilities—diagnoses like autism, ADHD, anxiety, and more—and we’ve had to embrace flexibility, creativity, and sometimes just letting things go when things feel too hard
A Tale of 2 Women, Vastly Different But Forever Tied Together
Ruth saw a bright future for herself. She didn’t have an exact plan in front of her. But at 18, she vaguely knew what she wanted in the future: a master’s degree, a husband, a job she enjoyed, and children. Emma was on another path altogether. When Emma turned 18, she was already enrolled in a school for students with more significant disabilities.
For When You Don’t Feel Thankful
My daughter arrived in the Intensive Care Unit (ICU) in the middle of the night on the eve of Thanksgiving. A tough respiratory virus attacked her lungs, and she needed a substantial amount of oxygen support. And now, this unexpected illness meant Thanksgiving was going to be completely different than we had all planned.