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5 Words That Helped Me Move Forward After My Daughter’s Cystic Fibrosis Diagnosis


This week we’ll finally acknowledge that our darling baby girl, Nancy, needs medical treatment that we as parents can’t provide. We’ll face the start of a lifetime of interventions to help her maintain a healthy body. We’ll be with her when her eyes stream with tears. We’ll hold her hands and reassure her that she’s OK, it’s not going to hurt for long and her cough will go away after a few days.

mom holding daughter
Lucy and her daughter, Nancy.

We’ll do this with quivering lips and an aching throat. We’ll trust the staff that have looked after us since delivering a life-changing, stomach-churning, silent-scream line: “The sweat test was positive. Nancy does have cystic fibrosis.”

This week Nancy is starting a course of intravenous antibiotics. I feel two letters could never sound more invasive or threatening. When I say them and when I hear them, I recoil. I can feel them in my body.

However, those two letters are going to help her. I believe that.

In the early days of Nancy’s diagnosis, I struggled with the resentment and grief of being handed this news. I didn’t realize the toll it was taking on my body and went to see an amazing acupuncturist for some help with how I was feeling physically.

After listening to me sob for an hour, she said something that made me really cross at the time: “Nancy’s journey isn’t your journey.”

Well, of course it is, isn’t it? I was indignant. I’m her mom, I carried her for nine months and I gave her life!

But that’s just it. It’s her life. She must live it. It’s a gift. I can’t feel her pain when it’s not mine. How can I help her when I’m suffering and wrapped up in my own world and grief? It’s not about me.

It’s the most supportive and profound thing anyone has said to me ever. It keeps me moving forward with empathy and compassion. It keeps my heart from ruling my head and helps me love my daughter unconditionally. Without cystic fibrosis, she wouldn’t be Nancy.

So these next few weeks aren’t my journey. But I will travel it with her.

A version of this post first appeared on It’s Not Your Journey.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.