Welcome to a ‘Candy Shell Life’ – Friedreich’s Ataxia News

“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!

Read more at: https://friedreichsataxianews.com/2019/04/29/candy-shell-life-caregiving-new-column/

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