Looking for lessons after hard times is not what blogger Janae Copeland thought she would be doing this summer. Not after the increasingly good health her daughter Clark had been enjoying for several years. Yet, Janae has found much to be grateful for and to pass along to her daughter and you.

A year ago, I composed a post for the Different Dream blog entitled What a Difference a Decade Makes. In it, I outlined all the differences in the life of our daughter, Clark (and our whole family) since the early years of her life with EA/TEF. That version of me was in a place of reflection. My distanced recollections were a little blurry around the edges, not nearly as piercing as they had been ten years earlier. Little did that version of me know that in less than a year I would be thrust so forcefully back into that reality that it would take a few days to (literally) get my feet back under me again.

Let me explain…

Although Clark always had continued difficulties with eating and recurrent respiratory infections, we were eventually convinced by her doctors—and began to believe ourselves—that this was her baseline, the best she would be. We were told to be patient, that improvement would come with growth, and that things would eventually level out. And most of the time, that was true.

Except when it wasn’t.

In January and February of 2023, it REALLY wasn’t! Those months were some of the darkest days we’ve had in a while. Round 2 of COVID, which had been of little consequence the first time, was quickly followed by pneumonia that just wouldn’t give up. Now living in a new city, we commenced our journey anew, prepared to recite the facts of her early diagnoses, procedures, struggles, and histories to new doctors. Fortunately, every medical professional we encountered did all the things we so desperately needed them to do. They believed, they listened, and they looked at her from all angles with fresh eyes. By mid-May, we had an answer. Clark had another tracheoesophageal fistula.

No biggie, you might be thinking. TEF kids have recurrences often, They’re not terribly out of the norm. But hers wasn’t a recurrence. It was congenital. It had been there from the beginning and had never been detected, presumably because of location, position, and size. When we got the results, I couldn’t find my physical balance for a few days. But I had to quickly transition to action mode, and I did. Within days, Clark was scheduled for surgery at a hospital four states away.

As I write, Clark is now officially TEF-free for the first time in her life. We’ve had to adjust to our new reality. As her mom, I have had to rewrite her story. Until a few months ago, my spiel was “Clark was born with EA/TEF Type C, repaired at Day 2”. Now, the truth is a bit more complex. She’s an EA/TEF Type D, repaired at Day 4,089.

Even Clark is having a bit of an identity crisis. A month after the surgeries she began saying things like, “I can’t make my dragon sound anymore, Mom” and “I don’t really know how to cough now.”

As in the past, I am looking for lessons after hard times. Admittedly, this time was the hardest for me yet. Before, I took comfort in the fact that we bore the brunt of Clark’s early medical procedures for her, that her young age would protect her from the trauma and memories. Now, we were processing them with her instead of for her. I couldn’t take the burden from her again. So what have I learned?

• Clark still lives up to her name. She is our Supergirl—brave, aware, and even on her hardest days, still looking out for everyone else.
• God’s provisions are ever present and sufficient. As we had seen before, there were gifts and graces at every turn.
• I have to give myself grace instead of beating myself up for not pushing harder when I suspected that there was more going on, when pushing could have saved her from years of needless suffering.
• Only God knows the plans he has for Clark, plans that will help and not harm her, plans for a prosperous future.
• Perhaps this time the lessons were as much for Clark as they were for us. My hope is that she will be able to look back one day and know how this journey was designed to bring her toward her purpose. That this is just a small part of what makes her special. That with God’s grace and the support of everyone that loves her, she can continue to grow into the brave and unique soul she was born to be. And that looking for lessons after hard times will bring her closer to her creator.

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Photo by Diego PH on Unsplash