“I can tell that you are really strong and that you can take it,” she said. “So I’m going to tell you like it is.”
This is the first thing a Friedreich’s ataxia parent said to me when we first met. She had lost her son to FA a few years earlier, and she wanted to prepare me for what she knew lies ahead. In my head, I said to myself, “That’s right! I am strong! I can do this!” I listened to her stories and advice, and I took a lot of notes. I asked her questions and mentally prepared myself for the next steps I would need to take to become an advocate for my daughter. I didn’t break down. I didn’t cry. I actually felt myself becoming stronger just by holding it together through our meeting.
But a few days after we met, I was having trouble getting out of the bed. I found myself breaking down and sobbing at random times throughout the day. I actually snapped and lashed out at several of my friends who reached out to see how I was doing. Clearly, I was not as strong as I had thought. I was an emotional wreck.
The thing is, the other FA mom seemed tired, tough, and battle-worn. She had seen the worst and survived, but I could tell it had changed and shaped her into someone who has armor on all the time. It was as though I were looking into a crystal ball and seeing myself as a woman who was angry and tough. And that’s not who I want to be.
I am an extremely sensitive person, and I enjoy feeling my emotions. One of my friends once told me she thinks crying is my spiritual gift. I think she meant it as a compliment. My children and husband love to make fun of me because I emote over commercials, books, podcasts, TV shows, and movies. Weddings, baby baptisms, and funerals require me to be equipped with a box of tissues. Basically, I am an unapologetic mushy mess of feelings.
My daughter’s diagnosis of Friedreich’s ataxia hasn’t changed that about me. But I am learning that I have to dial it down a bit. If I give in to feelings of depression or fear about her future, sadness and worry would monopolize every moment of the day. There is no time for that!