Tuesday, October 11, 2016


Dear Jacob,

Life got busy around here, and I didn't get to sit down and write to you lately. It doesn't mean I don't miss you. You are never far from my mind. Sometimes it still hits me that you are truly gone. Sometimes when I see a picture of you, I can still sense your skin, your kissable nose, your hands, your perfect baby feet, and your thick hair. I can hear you vocalizing, especially those really loud vocalizations carrying all through the house when you wanted to shout from the roof tops that you were having a good day. I can hear a Jacob sigh, and it will hit my heart and mind at the same time. How lucky was I to understand the meaning of a Jacob sigh. It meant life was good. Good and simple. I can still remember the taste of wet kisses on your very lovable cheeks and tiny nose. You sometimes tasted a little salty from dried saline solution we used for your nose. And I can see you right in front of me as if you just had decided to escape for a little while.

This picture popped up on my screen saver, and I could sense your soft skin, the weight of your arm and hand, and your tiny little fingers.

As we're adding another month to life without you, I am trying to make sense of your too short life. And sometimes it is like lightning striking from the sky. We found out from one of your Mito doctors that there are now six of you. With your discovered Mito gene, physicians around the world can test for your Jacob gene. Suddenly, you are popping up around the world. You all show similar symptoms of mitochondrial disease. With your discovered gene, your Belgian doctor was also able to discover related genes, and in that group, you are now about twenty known cases world wide. You were always beautifully rare. Slowly over time, there will be more rare "yous" in the world. It makes me a little happy that you contributed your part to mitochondrial research.

As fall has arrived, I have spent more time in your room. I sit on your couch, I put on one of your CDs. I hold your Minion pillow made by your massage therapist, and I let my eyes gaze over all your pictures surrounding me. It often bring tears. It often brings pain. It is my very own sanctuary.

I wanted to let you know of my special visitor coming all the way from Sweden. My magical friend Mari came to visit this past week. When you left us in June, she immediately asked when she should come and visit. It was tempting to ask her to catch the next plane, but I knew that I was going to need things to look forward to this fall.

Mari helped me through the loss of my mom when I was crazy nineteen. Every Sunday night, we went to the same restaurant and bar in Stockholm drinking white wine and eating peanuts. She listened as I talked about my mom until there were no more words. She stood by my side even when I wasn't the best of friends. She never gave up on me. She was my rock.

27 years later, she was standing at DIA (Denver International Airport) with her suitcase full of Swedish candy and coffee to simply be here for me. She's the kind of friend who speaks what I am just formulating in my mind. Laughter and sincerity are all wrapped into one. I got to talk and talk about you, and I got to have fun and laugh at the same time. She visited with you at the top of Flagstaff, and understood the importance of your very own place. Her presence in my life is beautiful and a secret medicine. She simply fills my cup.

I'm grateful for her friendship as fall comes with so many memories of you.

Sweet Jacob, I love you to the moon and back,


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