What to do when avoiding hard conversations is impossible

“Is it something sad?” Amelia always asks this question when I tell her we need to talk. Like an anxious employee worried about being in trouble with the boss, Amelia fears hearing sad news. My beautiful 13-year-old daughter, who has Friedreich’s ataxia (FA), has a very sensitive heart.

Usually when this question is posed, I make a crazy face and ask her why she thinks “something sad” has happened every time I want to talk to her. (It’s usually about chores or schoolwork.) But this time, I bit my lip to keep the tears from flowing.

Amelia has many incredible people in her life, from intervention specialists we see weekly to neighbors who surround her with love and support. She benefits from having a devoted extended community. The night before my conversation with Amelia, my husband and I learned that someone who worked with her daily had passed away unexpectedly. This person was not only a constant in Amelia’s life, but also a source of laughter and encouragement. This loss would hurt.

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When we were on Amelia’s diagnostic journey, the language that doctors used regarding how quickly Amelia was progressing was terrifying. I would put headphones on her while the adults talked, ensuring that she remained in the dark. Once we received a diagnosis of FA, I found my language shifting more to treatments on the horizon and what we were doing to fight this disease.

Talking about the reality of FA without drowning it in optimism was too heavy for me. It was almost like I wanted to keep repeating, “It’s going to be OK.” Sitting with the pain of what FA can do was terrifying. I wanted to spare myself and, more importantly, Amelia and her sister.

As Amelia has started asking more questions about FA, including its severity, I’ve found myself being vague in my responses. It’s like I’m hitting the snooze button on sharing realities I don’t want to talk about with the person who is directly impacted by FA, and who has a right to know. Don’t get me wrong; I don’t think I should give Amelia information that is not age-appropriate or is too much for her to handle. But avoiding hard conversations because it is emotionally hard for me might not be serving her well.

So I found myself in the living room with “something sad” to tell Amelia. I couldn’t protect her from it, because in a few hours, she would wonder where the person she looked forward to seeing every day had gone. I also knew that at some point, she would hear the news, and I had a choice about who she heard it from.

I took a minute to pull from all the knowledge I had as a licensed social worker regarding trauma-informed youth care. I wanted to be clear and direct but also gentle. I wanted to keep the language and messaging age-appropriate. I needed to pivot to whatever response occurred, knowing that young brains are still developing and need time to process information in their own way.

The biggest gift I needed to give Amelia in that moment was to hold space for grief and not try to make things better. This was not a fixable situation. There was no magic wand to wave, no tangible item I could buy to fix it. It was just going to hurt. What I could do is love my daughter the best I could and be present for her.

So, with a heavy heart, I leaned in close and answered Amelia’s question. “Yes, baby, it is something sad. And I am here.”

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.