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

by jphilo | Jan 15, 2025 | Different Dream, How-Tos, In Parents, Special Needs Parenting, Spiritual Support

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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Image by Hilke Fromm from Pixabay

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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 Instagram, Twitter, and Facebook.

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How Can an EA/TEF Parent’s Anxiety Be Held in Check Before their Child Starts School?

How can an EA/TEF parent’s anxiety be held in check before their child starts school? Karena Skibinski began asking herself that question several months before her son started preschool. In today’s post, which is part of Different Dream’s ongoing series for EA/TEF Awareness Month, Karena writes about six actions that helped her the most. She hopes they will help you too.

Three years ago, we were still in the thick of our NICU stay with our son, Lincoln. Shortly after he was born, he was rushed to the nearest children’s hospital (which, turns out, is one of the best in the nation) and was then diagnosed with Esophageal Atresia (EA), Type C. Two major surgeries, one G-tube, and 87 days later, he was discharged. His first 18 months were a blur and were filled with various doctor appointments, dilations, scopes, and various therapies.

Fast forward to now. He turned 3 this past October, and things have been going well. Instead of all of those appointments, our days are filled with nature walks, Lego, potty training, playing with his big brother, and trying new foods. Lincoln reached a big milestone in August. He started preschool. He attends the same preschool as his big brother, so he was somewhat familiar with the building, some of the teachers, and the general morning/pickup/drop off routine.

I was a different story. Aside from when Lincoln was discharged from the NICU, his starting preschool was what I was most anxious about. This would be the first time he’d be in the care of someone else, as we made it work for me to stay home with him those first few years. I had so many questions. How would he adjust? How could the teachers keep an eye on him with so many other kiddos in the classroom? What about the sickness that inevitably comes along with starting school? All of these questions—and about 100 more—were swirling around in my mind at least a few months before the first day.

Here are 6 things that made the transition to preschool easier for our family.

Therapy for myself: I’ve been in therapy for several years now, and it’s been one of the best things for my overall well-being. I am a huge advocate for therapy! It’s truly wonderful to have a scheduled space with a trusted therapist to continue processing the trauma related to Lincoln’s birth and the fears that go along with raising a medically complex child.
Implementing a solid general routine: This is foundational for any kiddo, and there is lots of research supporting the efficacy of a good routine. It builds predictability, which in turn builds confidence and space to learn, explore, and grow.
Meeting with the teachers beforehand, and ongoing open communication: Our school gave us the opportunity to meet with Lincoln’s teachers a couple weeks before school started. We also filled out paperwork related to general topics about Lincoln (e.g. what he likes, what he doesn’t like, etc.) as well as about his medical background, and a general mealtime plan that we went over face-to-face. This gave me peace of mind!
Getting a copy of the breakfast/lunch/snack menu and being in touch with the school chef: We went through the menu and identified foods that Lincoln may need modified or substituted (e.g. carrots, grapes). This is kept in the kitchen.
Providing a copy of this informational handout as well as a document that contained all of Lincoln’s medical background/medications: I found an outline similar to this in one of the EA/TEF Facebook groups that I am in. I emailed the completed document to the school about 4 months prior to Lincoln starting school. It was a way to get communication started about his condition. I’ve provided a short, one-page document with Lincoln’s medical background and medications. It is kept in his file at school. Should EMS ever need to be involved, the document provides them with quick information related to his medical needs.
Providing “just-in-case” items: I’ve heard some families provide yogurt for their EA/TEF kiddo to have during lunch time, but we’ve only provided a small can of Coke for the teachers in case of a “stuckie.” Coca Cola has been most beneficial for Lincoln in that situation.

Lincoln’s been in half-day preschool 4 days a week for one whole semester now, and things have been better than I could’ve imagined. Luckily we have had no issues, and going to school has had a positive impact on his overall development and our family dynamics as well!

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Photo by Mourizal Zativa on Unsplash

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Karena Skibinski is a mother and occupational therapist. After taking a few years off to be home with her children, she recently returned to working weekends in a hospital setting. It’s been such a blessing to her and her family. When she’s not busy running around with her two boys (Lennox is 5 and Lincoln is 3) or working, you can find her in the kitchen trying new recipes, going on long walks with her two pups, or taking an afternoon nap. Through her work, her mission is to bring more awareness to EA/TEF and to provide reassurance to EA/TEF families that they aren’t alone.