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.
Image from @jknorman714 on Unsplash
I’m not in control, but God is and I can trust him. When the doctor diagnosed our son’s condition, I instantly realized God was in control and I wasn’t. Accepting that truth and trusting God with our baby’s life…or death took about eight months. When I accepted this truth, raging anxiety subsided so I could be the mother our son needed.
Our child was a gift from God. He belongs to God, who gave him to us to steward for however long he lived. Realizing this truth allowed us to rejoice each day he was with us, to delight in him as he came into himself instead of molding him into what we wanted for him. I had to relearn that lesson often, especially when as an adolescent and young adult his decisions were not always wise or in line with my faith.
Write it all down. Journal about your feelings, about where you’ve seen God show up, and whatever else you want to record. You should also compile a written document containing your child’s health history and your observations about their individual EA/TEF journey. Make a paper copy to update as needed. Because your child has no explicit memory of when surgeries took place or the reason for them, present a paper copy to keep in a safe place when they turn age eighteen. Who knows when they may need it.
The medical events your child is experiencing as you care for them are preparation for the rest of your lives. I’m a to-do list, let’s get this done person, so this lesson helps me handle long waits to see the doctor and hours spent in surgery waiting rooms or long hospital stays easier to swallow. (No EA/TEF pun intended.) I may not have any idea of what God’s preparing us for, but I do know he’s not wasting our time.
Look for the helpers. Mr. Rogers directed those words to children, but I latched onto them during our son’s early life. One of the many hospital helpers we found was a pediatric nurse who grew up in my hometown and knew my sister. We discovered helpers outside the hospital as well. Extended family, co-workers, neighbors, church friends, and strangers were there to help when we let them in…which leads to the next lesson on this list…
Let people in. They can’t help unless you tell them you need help and what they can do for your family. Letting others in is hard because we don’t want to be a bother. We don’t want to sound whiny or make people think we resent our kids. Just remember that you only need to tell the right person––someone you feel comfortable talking with and who has communication and organizational skills to rally others to become your helpers.
Chronic grief is real. Parents of children with EA/TEF or other conditions often don’t allow themselves to grieve because their kids are alive. Even so, we’ve endured losses such as a NICU stay instead of taking a new baby home, delayed developmental milestones, additional diagnoses, setbacks, and more. These ongoing losses lead to chronic grief that needs to be acknowledged and processed. Talking with another caregiving parent is a good first step. Working with a qualified mental health therapist earlier rather than later is a good next step.
Trauma is real. Babies can experience trauma in utero, during a difficult delivery, and during surgeries and procedures at any time after they enter this world. Parenting a child who is medically complicated can be traumatic for parents, too. Our son was 26 before he was diagnosed with PTSD caused by his early medical trauma. I was in my forties before I sought treatment to process the parental trauma I had experienced. Children as young as three can be effectively treated for trauma. Use these links to learn how to find a trauma therapist for kids or adults.
Life doesn’t have to be perfect to contain beauty and joy. As a recovering perfectionist, I am continually relearning to find beauty and joy in the cracks and imperfections of life. As songwriter Leonard Cohen said, the cracks are how the light gets in.
We have to acknowledge and embrace new seasons of life. Parenting a baby with disabilities is one season. Parenting a young child, adolescent, or young adult with ongoing special needs is another. My present season is one in which our child who had special needs is now independent and healthy. It’s a wonderful season to be sure, but it has resulted in little to write about for caregiving families. My options at this point are 1) to dredge up content from my hardest parenting years and write about that (which can be detrimental to my mental health), or 2) obey God’s prompting over the past few years to pursue a new writing trajectory he has provided.
I have chosen the second option, which means this is my final post about disability parenting. I hope the lessons I learned while raising a child with EA/TEF bring joy, beauty, hope, and fresh perspective as you raise yours. Thank you for being part of my life.
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman is available at local bookstores, their bookstore website, and Amazon. See Jane Dig!, the fourth book in her West River cozy mystery series, which features characters affected by disability, was released in October of 2024.
