The Lessons I Learned while Raising a Child with EA/TEF

The Lessons I Learned while Raising a Child with EA/TEF

The Lessons I Learned while Raising a Child with EA/TEF

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.

  1. 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.
  2. 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.
  3. 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.

To read the rest of The Lessons I Learned while Raising a Child with EA/TEF visit the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dig!, the fourth book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2024.

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Looking Back at Your Child’s EA/TEF Journey

Looking Back at Your Child’s EA/TEF Journey

Looking Back at Your Child’s EA/TEF Journey

Looking back at your child’s EA/TEF journey can give parents a new perspective about past events. Guest blogger Maggi Gale shares how her look back clearly showed her how God was with their family during their daughter’s very unusual first weeks of life in 2002.

Three months after arriving in Tanzania, I discovered I was pregnant. Dar es Salaam offered an easier life than the area of rural Africa where we’d previously taught. So, being tough skinned and with a resilient trust in God, but no house of our own in England, we decided to stay there and have our baby.

Late in my pregnancy, despite being the size of a small elephant, a scan revealed that my baby’s weight had decreased. Not being medically minded, this meant nothing to me. A friend urged me to go for a follow up scan, so I did. I was told I had a lot of amniotic fluid but a small baby. Again, this rang no bells in my head, so I merrily carried on.

The alarm bells rang out loud and clear when our daughter didn’t cry after she was born on a Friday afternoon. As she was rushed away by nurses, I lay on the gurney, my body reeling from giving birth, and my heart spiraling out of control. What are you supposed to do when the birth of your baby doesn’t go according to the script you had worked out in your head?

Finally a doctor appeared beside me, his energy a little jumpy as he explained his diagnosis. He said our baby had swallowed secretions from the birth canal so he’d put her on antibiotics as a precaution in case she had picked up an infection.

He had lost me at “There’s nothing to worry about, Mrs. Gale.” I knew instinctively that both his assumption and diagnosis were wrong.

Even though we were newcomers to the community, God enveloped us with his family at that time. Visitors came to the hospital, provided meals, and made sure my parents who were visiting and our two-year-old were taken care of. They also offered many, many prayers.

Watchman Nee wrote that “Prayer is the railroad track of God’s work.” What tracks are to a train, prayer is to God’s work.

We began to see the train of God’s provision roll down the tracks during this agonizing time of crisis.

A colleague’s wife, who was an experienced pediatric doctor, visited us in hospital the day our baby was born. Although this friend didn’t say anything, she saw that something was off with the diagnosis. She went home and spent the night franticly researching what could possibly be wrong, based on the clue of my excess amniotic fluid. She was back on Saturday morning, when she privately challenged my doctor. Due to her boldness and wisdom he agreed that there was something not right with our daughter’s esophagus, and that we should fly to South Africa or England as soon as possible.

Saturday my husband arranged for an emergency passport. Meanwhile, I walked out of the hospital and hailed a taxi home to haphazardly throw clothes into a suitcase. By Sunday morning, we were on a plane with our new doctor friend and our daughter’s IV bag taped to the bulkhead. My daughter’s eyes seemed to plead with me, as if she knew she was ill. She reminded me of a tiny bird, so frail and vulnerable. Looking at her face, I ached to do everything in my power to make her well, to make her live.

God’s train of help continued to rattle down the tracks. Sue, a member of our church in England, worked both in intensive care and in repatriating people from overseas. She had arranged for an ambulance to meet us at Heathrow Airport in London to take us to the hospital in Southampton.

On Sunday evening, we sat with a brilliant surgeon who patiently explained what was wrong. As he talked and drew diagrams, my mist of confusion began to dispel. She had esophageal atresia/tracheoesophageal fistula (EA/TEF) We were offered no guarantees about the surgery, which was scheduled the next day, but a semblance of relief came from understanding the problem better.

Everything was not smooth sailing after our daughter’s dramatic entrance into the world and her successful surgery. There were infections with nights of coughing and antibiotics. There were food blockages with surgical removals. On top of all that, there was the frustration and pain of an unanswered question: Why?

Every EA/TEF family has a unique story. In our case, I can testify that along with the troubles, we also experienced God’s help and the capacity to get through them. People bent over backwards to help us medically, practically, and emotionally. Slowly but surely, our daughter’s condition improved so much that she now lives an independent, healthy life.

Psalm 34:19 says that the righteous person may have many troubles; but the Lord delivers him from them all.

When you are looking back at your child’s EA/TEF story, may you see how God’s strength and the people he sent helped you get through your troubles too.

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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

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How Do I Let Go of My Adult EA/TEF Child?

How Do I Let Go of My Adult EA/TEF Child?

How Do I Let Go of My Adult EA/TEF Child?

How do I let go of my adult EA/TEF child? That’s the question every parent of a baby born with EA/TEF hope to ask one day in future. That future is now for guest blogger Valeria Conshafter. Her daughter is looking at colleges as she nears adulthood. Today Valeria writes about her struggle to let her daughter go.

My baby girl who was born with EA/TEF, turned 17 this month. It feels like yesterday when we got the news that she couldn’t swallow because of her rare congenital birth defect. It’s the last thing we expected to hear when we welcomed our first (and only) baby into the world. We had no idea what parenthood would look like. The road was bumpy, and fear and faith accompanied us throughout our journey.

Most of the challenges are behind us. Now we are trying to understand and adhere to her plans toward independence in college life. And that means she will soon become an adult and be on her own.

It’s way too soon for me.

I question if I will ever be ready for this. How do I let go of my adult EA/TEF child? Our lives were so different than those of parents with healthy babies. It seems like yesterday when I dropped her off for her first day of kindergarten. I cried for an hour in my car, worried to death and wondering if she would be able to eat her snack safely without me there.

There were many scary moments at home during her feedings and illnesses—too many to count—when I nearly lost her and my sanity. The memories turned into PTSD and years of therapy. The prognosis is uncertain for babies born with EA/TEF. To me that means something can come up at any minute and at any age, so I need to be on the lookout!

I wonder if she knows about the trauma I am still processing and trying to make sense of. That’s why, in my mind, it is too soon to let her go.

She is ready but I am not.

We rarely talk about her condition anymore. The other day she said she forgets about it and doesn’t care she had a tough life when she was younger. She said she is fine—and thank God for that, I guess.

But what about me? How do I let her go?

It all went by too quickly. She needed me beside her 24/7 once, and now she’s ready to leave? I am still in a watchful mode. She had a cold a few weeks ago. Just the thought of her being sick made my body fill with anxiety and fear in an instant.

Breathe. Pause.

I take a step back and think, “How in the world will I do this when she’s far away? Do I really need to let her go?” All of a sudden, our story is changing, seemingly without a warning or enough time to heal.

But I can’t dwell much on that thought.

I’ve learned to deal with fear many times and my mind knows the answer, even though my heart hides from it. Letting her go is a must, a natural process of life. I should be happy about it. And I am.

Fear and worry might want to stay awhile, but faith is what I hold onto.

God trusted me to care for this child, and I believe that he wants me to trust him and let her go. What stops my overwhelming fear from running my life is remembering this: God has her. He will never let her go. Ever!

And so I change my focus to that.

I put my trust in God’s hands. I see my girl in His hands. Safe anywhere, everywhere—during every bite she takes and every sickness she will endure. She will be away from us sooner than I want, but I trust that God will be always at her side. I must let her go.

God does not and will not.

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Valeria Conshafter is a native of Brazil. She has a background in Counseling Psychology and currently works for a women’s organization providing emotional and spiritual support to women all over the country. She loves writing, cooking, and praying for her family and friends. Valeria lives in Houston, Texas, with her husband Todd, their 15-year-old daughter, Sofia, and their two Standard Poodles, Chocolate and Oreo. You can find Valeria on InstagramTwitter, and Facebook.

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When God Redeemed My Worst Christmas Ever and Used It for Good

When God Redeemed My Worst Christmas Ever and Used It for Good

When God Redeemed My Worst Christmas Ever and Used It for Good

 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.

When Christmas of 1982 rolled around, our medically fragile baby was 7 months old. He’d already been through major surgeries, airplane rides, hospital stays, tube feedings, and who knows how many doctors’ appointments. Had I not been too sleep deprived to muster a single creative thought, I could have penned the lyrics for “The Twelve Days of a Medically-Fragile Kid’s Christmas.”

All we wanted for Christmas that year was to stay home.

So we did. It wasn’t the first time my husband hadn’t gone home for Christmas, but it was the first for me. Thanks to dear friends in the town where we lived, it wasn’t as bad as it could have been. Those friends—he was our pastor, his wife was our son’s back-up babysitter, and their 2 older kids were my students—invited us to Christmas dinner. Their extended families were there, too, and our baby was the center of attention all day.

Even so, Christmas 1982 was my worst Christmas ever.

That changed this past November when one of their sons texted us. Having visited his parents during the summer, we were aware of our former pastor’s dementia and increasing care needs. We’d told his kids to call us if they needed extra help. In his text, the son asked if we could come and stay with his parents for the final week of his mom’s recovery from surgery.

To read the rest of When God Redeemed My Worst Christmas Ever and Used It for Good, please visit Key Ministry’s blog for special needs parents.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dig!, the fourth book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2024.

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Jesus Loves Me This I Know

Jesus Loves Me This I Know

Jesus Loves Me This I Know

Jesus loves me is a familiar song to many. In this post Mark Arnold describes how God used it to assure his fatherly heart that his autistic son is loved by our heavenly Father. May it assure your heart as well.

Jesus loves me this I know,
For the Bible tells me so,
Twenty-somethings to him belong,
They are weak, but he is strong.

Yes, Jesus loves me.
Yes, Jesus loves me.
Yes, Jesus loves me.
The Bible tells me so.

Ever since James, our son who has almost no speech communication, was a tiny baby, I have sung over him that much-loved old chorus. Over the years, he has been able to join in through words and sounds. We adapted the words as James grew, replacing “little ones” with “teenagers” and more recently, with the “twenty-somethings” version above.

Often, as we sing or say these words together, joy spreads across James’ face. Perhaps it is the familiarity of the words. Perhaps it is the time we are spending together. I also believe that Jesus joins us in that space, that his voice is added to ours. He ministers to James as we sing, and I believe that James responds to that.

James and I recently had the great privilege of being part of a BBC 4 Sunday Worship recording that was broadcast on November 17, 2024. The service was focused on and presented by autistic people.

We were recording in the middle of the day, so I wasn’t sure how James would respond. He did magnificently, his voice joining mine as we said the words together, James using words and sounds to take part.

As we listened to the broadcast, James didn’t particularly respond to his voice on the radio. When it cut to a beautifully sung version, James looked up, and a joyful smile spread across his face. I smiled back, tears welling in my eyes.

Many years ago, I talked to someone about my worries about James being unable to speak. She told me that his voice would be heard across the world. I didn’t know what to make of it then. Today I have a glimpse of what God was saying through her.

BBC Radio 4 Sunday Worship is heard by 2 million people. The blog I write is read across the world. James is seen, heard, and known by millions. He is seen, heard, known, and loved by God.

Yes, Jesus loves him.
Yes, Jesus loves him.
Yes, Jesus loves him.
The Bible tells me so.

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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold

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Does God Speak Dutch?

Does God Speak Dutch?

Does God Speak Dutch?

Does God Speak Dutch? is an unusual way to begin a Different Dream post during the Christmas season. I encourage you to read on and let guest blogger Steve Harris explain the connection. It’s a good one you won’t want to miss!

This December Andy Williams will remind us often that Christmas is the “most wonderful” and “happ-happiest season of the year!” It’s easy to see why. Festive lights, frosted cookies, family parties, presents under a tree. Favorite movies are part of the fun too. One I enjoy is Miracle on 34th Street. It was released in 1947 and re-made in 1994.

My favorite scene is when the little girl, a Dutch war orphan, wants to see Santa at Macy’s. “She doesn’t speak English,” explains her adopted mom, “but was sure you could talk with her.” Santa pauses, smiles, then tenderly lifts the child onto his lap. The two begin to visit and sing—in Dutch. Her guardian tears up. I dare you to watch Miracle on 34th street Dutch girl scene without getting a little weepy yourself.

Double-dog dare you.

It’s a sweet picture of a remarkable spiritual truth for parents of children who are disabled and have special needs. When I was a new dad of a baby born with spina bifida, someone gave me a short story to read. The title was Welcome to Holland written by Emily Perl Kingsley. She was one of the first writers on Sesame Street and the mom of a son with Down Syndrome. In my 44 years of parenting two sons with disabilities, it remains the most powerful, honest, and helpful perspective I’ve ever read for parents like us.

Get ready for Kleenex Number 2.

Here’s a short summary of Kingsley’s amazing analogy. Joyfully anticipating the birth of a child is like planning a dream vacation to Italy. Your plane lands and the attendant announces, “Welcome to Holland!”

“Holland? That’s not right. We’re supposed to be in Italy.” The surprise, shock—and yes, the sadness—of that new reality will be part of us forever. But then come new realities and adjustments, and the life-saving truth that there are also wonderful—can we even say glorious?—things about Holland.

The Miracle on 34th street Dutch girl scene and Welcome to Holland revealed a truth for me that crystallized into questions that go way beyond fuzzy, greeting card sentimentality.

Did God arrive with us in Holland?
Is He here now?
Does He know how all of this feels?
Most importantly, does God speak Dutch?

I believe He does.

He is with us on every step of our parenting journey. He speaks our language. He knows how we feel. He knows the words we need to strengthen and encourage us, though I may not always hear them. I’ve learned that sadness can create spiritual deafness. But God continues to speak, in words accessible through His Word, in a language I need to listen to, learn, and understand. It is a language of presence and purpose.

It is a language of love.

Dad and Mom, may His words be clear to you this season and all through the new year. Merry Christmas to you and your family!

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Steve Harris—www.steveharrisauthor.com—recently published “Dads Like Us: A Survival Guide for Fathers Raising a Child with Disabilities.” He lives with his wife, Sue, in Lanesboro, Minnesota. Reach him at steveharrisDLU@gmail.com.

Author Jolene Philo

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