What does my child remember about EA/TEF treatment? That’s a question parents ask themselves often. In today’s EA/TEF Awareness Month post, guest blogger Valeria Conshafter reports on what her daughter says she remembers as they celebrate her 16th birthday.

She doesn’t remember anymore.

That’s what she told us, the other day at her birthday dinner when I mentioned this month was EA/TEF Awareness Month. I was surprised. I was surprised because I have not forgotten a single thing.

I remember everything.

Every month after receiving the news that our baby was born with a rare birth defect known as Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF). I remember.

My only child, my daughter Sofia, was born 16 years ago in January. She is a bright and vigorous teenager. Full of life. Thankfully, I believe, the worst is over.

“All I remember” Sofia said, “is that I wanted that pink, butterfly, rolling carry-on suitcase from the hospital’s gift shop and that Daddy was carrying me, and then I got it. I got the pink butterfly suitcase. But I don’t even know what I was there for. I don’t even think about this EA/TEF stuff anymore. It’s like it doesn’t even exist.”

“Oh, the other thing I remember” she continued, “is that I had to drink that nasty stuff for an x-ray and then afterwards the doctor told me I didn’t have to come back to see him anymore.”

“I remember it too, honey,” was my reply.

I remember everything.

I remember that was the day of her last surgery. The 12^th one. She was 4 and wanted that pink suitcase for her first trip to Brazil to visit her grandparents. I also remember the day that she got clearance from having yearly esophograms, which happened just 5 years ago.

I remember each of her hospital stays, ER visits, and the many frightening moments at home.

There were too many to count. The life-threatening ones where I thought I was going to lose her.

Sofia may not remember all that we went through with her in and out of surgeries, all the holidays and important dates we spent in the hospital, the multitude of doctors, diagnoses, or all the choking episodes. But I do.

I will never forget; I know that as well.

I am certain that all that she went through is part of who she is and who she is becoming. Her strength doesn’t come solely from her genes or great personality, but from years of enduring treatments, recovering from surgeries, and all the suffering she endured too.

My girl is strong. My girl is amazing.

She is also full of scars and carries trauma. Her determination to do her best in all she puts her mind to comes from the warrior energy that she had as a child. A child who had to fight for her life.

Her narrative is different from many other teenagers her age.

It’s even different from mine—her mother who’s been there for her ever since. But for her, what she remembers is that she came out of that last surgery with a prize and that she did not have to ever go back to drink that nasty liquid. From now on she is gathering new memories and adventures to remember later. She will then be able to tell whatever part of her story she wants to tell and how she got to be the strong woman she’s sure to become from all her experiences.

Even when I remember it all, for her what matters is the here and now.

For those of you who are going through the difficult times right now, who are asking yourselves, “What does my child remember about EA/TEF treatment?” know that your babies will most likely remember very little of all what they went through. They will most likely not remember the hardships you went through or those difficult days you remember.

They will remember life differently than we do.

I know it is hard and there’s trauma along the way, but there’s healing too. Oh, am I still healing! But the truth is that your child’s story should be theirs to tell, however they remember it.

Your story and how you dealt with everything will have a space of its own; to inspire and to encourage those who are in it right now. But for this moment I want to sit with the fact that she is here and that she is okay. That she does not have remember anything as I do. She is free.

Happy Birthday, Sofia!

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Photo by Sime Basioli on Unsplash