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.
Kingdom Focus is what first comes to mind. Those of us who are married and have someone in our life with special needs for whom we have responsibility (often 24/7 and 365!) know that without focus, we are doomed. AND for those of us who are believers in Jesus, we add to that His Kingdom focus and our part in it.
For us, we have 5 top ways to work on our marriage and keep it strong. There are more, of course, but let’s not get overloaded!
A few years ago, I made a change in the way I interact with my children. It’s a small practice, but it has profoundly helped our family understand and grasp the truth that God loves and delights in us. Every single day, I tell my kids, “I love being your mom.” This intentional habit has transformed not just my relationship with my children but also how I relate to God.
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
When God redeemed my worst Christmas ever by using it for good, it came as a big surprise. Most likely because 1982 was the year of my worst Christmas ever, and the using it for good part didn’t come along until December of 2024. 42 years is a long time, which explains my surprise.
I thought a lot about Jack, whether he had gained anything at all from his time at Spring Harvest, whether he had been impacted by any of the spiritual program in his sessions. Had he just been child-minded, busying himself with his Jenga wooden blocks, or had something more than that reached him? A few weeks later, I got the answer to my questions.
Sometimes we only learn our lessons the hard way. There is truth in consequences. With autism or developmental disability, however, it can be hard to know what is reasonable to expect from our children. How much is too much? How much is too little? When do we make legitimate allowances for a disability and when do we not?
Whether at the doctor’s office, with our child’s therapy team, in the classroom for an IEP meeting, many times we are just not considered experts on our children. We are relegated to being just a bystander while the real “experts” make proclamations over our children. While they may be truthful many times, they still don’t define our children totally. It is in those moments that we must step in and be the voice in the gap between the understanding of the experts and the knowing of our hearts, and speak out the value of our kids that only we can communicate as parents.
The next song in our Post Tenebras Lux series is a song by Matt Papa and Matt Boswell called "Christ the Sure and Steady Anchor." Listening for the first time, I couldn't help but think of how our recent struggles with the effects of autism made me feel like a tattered boat with torn sails, like the first verse describes.
