January is EA/TEF Awareness Month. If you have no idea what EA/TEF is, don’t feel bad. I didn’t have a clue it existed until 11:00 AM (Mountain Time) on May 23, 1982.
I was impeccably dressed in a fetching hospital gown when a nurse wheeled me from my room to the nurses’ station to take a phone call. Back in the olden days, cell phones hadn’t been invented yet, and small hospitals like the one where our son was born didn’t run landlines into patient rooms.
I would mention that the term landline hadn’t been invented yet either, but that would detract from EA/TEF awareness, so I won’t mention it.
The pediatrician on the other end of the phone line explained that our baby, who’d been transferred to a larger regional hospital for tests, had a tracheoesophageal fistula, TE fistula for short. His esophagus, the doctor explained, came down from his throat and formed a blind pouch. It came up from his stomach and hooked into his trachea.
That was what doctors called it in the olden days. These days, they call it EA/TEF. Esophageal Atresia (EA) for the pouch at the top and tracheoesophageal fistula (TEF) for the hook into the trachea at the bottom.
Our son had surgery the day he was born. 5 years and 6 surgeries later, our boy could eat normally. But several decades passed before my husband and I met other parents of babies born with the same condition, or with one of its variations. We didn’t meet them or learn other EA/TEF variations existed until we joined Facebook.
Because the internet and Facebook weren’t invented until our son was an adult either. Boy, do I feel old.
Thanks to Facebook, I’ve become friends with young parents who know more about EA/TEF than I ever will. One mom, who’s writing a guest post for EA/TEF Awareness Month at www.DifferentDream.com, recently sent this update about the progress of her article.
My daughter is having surgery tomorrow, and I’m hoping to pass some time at the hospital writing.
How many moms do you know who consider hours spent in a waiting room as down time for writing? The answer to the question probably depends on how many parents of medically fragile children you know. Hospital visits and surgery are so routine to them, they consider it part of every day life.
Reading her words, I realized that 3 decades after our son’s birth, God is still raising my awareness of how He used my son’s EA/TEF diagnosis to change me.
- He’s created bonds between me and other EA/TEF parents that go deep and strong, beyond words to the very heart.
- He showed me the value of hope spoken and the need to speak it to struggling parents as it once was spoken to me.
- He’s made me grateful for the skill or doctors, nurses, and researchers whose work saves so many babies.
But he’s taught me one lesson above all others.
A doctor once told my husband and I that when the esophagus and trachea form, they lie close to one another, their diameters smaller than a pencil lead. One cell out of place, he said, and EA/TEF anomalies occur. With that explanation, the scales fell from our eyes and a marvelous, convicting truth washed over us. We so often rail at God and ask why when birth anomalies occur. But do we ever thank Him when, in the vast majority of births, babies are born whole and healthy?
Since that day, the ordinary, daily grace of God has become a miracle in my eyes.
I see God’s grace everywhere. In our journey as parents of a child with medical special needs. In friends made along this journey. In His perfect and constant provision and timing. In His forgiveness when I doubt and go a little crazy now and then. In His use of my words to reach struggling parents.
January may be EA/TEF Awareness Month. But now, every month is Grace Awareness Month.
You may not have a child with EA/TEF. But you are a child of God and the parent of a child with special needs. You are, whether you know it or not, sustained by His daily grace. Are you watching for it? Have you seen it lately. If you see it once, you’ll be aware of it everywhere. In every trial. In every joy. In every heartache. In every promise. In this life and the next. When that happens, every month will be Grace Awareness Month for you, too.
And you will be much the better for it.
For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 1while we look not at the things which are seen,
but at the things which are not seen;
for the things which are seen are temporal,
but the things which are not seen are eternal.
2 Corinthians 4:17–18