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.
In scripture, Jesus doesn’t tell us just to be passive prayers, but to be thankful for what God has done and to seek God’s kingdom and righteousness. We’re called not to be worriers, but to be warriors! Taking action spiritually, emotionally and physically can transform our situation, and be of much more help to our child, too.
Holidays can be a very difficult time for families with kids with special needs. Many of the traditions and family gatherings they used to enjoy, they can’t anymore. It can be an especially hard and lonely time, as the difficulties that come with special needs are magnified. Our first attempt was a sorry start to new holiday traditions. However, we persisted. Eleven years later, we have some new special Thanksgiving and Christmas traditions.
The special needs parenting journey can be exhausting, full of loneliness, challenges, and struggles. It can be easy to focus on how hard things are. But I find the whole month of November to be the perfect time to reflect on the things that I am thankful for. Once I get started thinking this way, I realize there really are a lot of things to be thankful for.
