Thursday, November 28, 2019


It's Thanksgiving week, and snow is surrounding me. This afternoon as the sun was settling the sky was purplish pink against the white silver snow. I felt muscles in my body I didn't know I had from shoveling with my girl today. Our dog was so happy to see the snow he didn't know what to do with himself. We made our first Swedish glögg (gluehwein) of the year after finding a bottle hidden in the kitchen cabinet.

This morning I joined our weekly Mito support call hosted by Miracles for Mito. It's led by our seasoned nurse Marybeth Hollinger specialized in mitochondrial disease. Since my girl was in the kitchen playing rap music on her phone and our dog was running around, I put the call on mute as I was baking and cleaning and listening to this wise community of patients across the country.

The topic of today's call was Thanksgiving. Holidays are not always an easy task when you're managing a chronic disease like mitochondrial disease. Stories unfolded. The typical Thanksgiving meal is full of carbs and not always the easiest food to digest. This means for some of our adult patients they need to skip the meal completely. One woman expressed her thankfulness to simply smell the feast and holding the grandbabies as the family is enjoying their special meal. Some are going to stay in bed today resting their mitochondria for the anticipated stress a holiday has on a mitochondrial body. Every single one knowing family and friends is what truly matters, not what is served at your table or if you eat stuffing and pie.

I love Thanksgiving. It's my favorite American holiday. It's a holiday of friends, family and giving thanks. We celebrate with friends we call family. It's casual, the best meal of the year, long conversations and friendships. What I love the most about the holiday is that everyone independently of age can give thanks. Last year, I had a big lump in my chest. Jacob was sitting in my chest. Despite all gratitude, I didn't even dare to mention his name not knowing what emotions would evolve.  After hearing all stories unfold this morning on the Mito support call, I realized we all get to tell our story. Maybe not every part of your life is perfect, but we all have a magnitude to be grateful for.

Today, I will tell my story. No story is perfect, but it's my story. My holiday is shaded by the empty chair of Jacob, but I have a tight knit family right next to me. They get me, and I get them. I have friends who are standing by us no matter what. I get to enjoy the craziness of the day before Thanksgiving, bake pies and side dishes and hearing girls giggling in my kitchen. I get to savor all the flavors of Thanksgiving and laugh with friends. I get to live. I get to be thankful. I get to tell my story.

With gratitude,


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