Friday, November 13, 2015


Tonight, sweet Caleb is sharing my refrigerator space with Samantha. Samantha's picture from her memorial service has been hanging on our fridge for over five years. Tonight, Caleb's picture is up too.

Today was a heavy day. A day that is the reality of Mitochondrial disease. On Monday, our community lost beautiful sweet Caleb to Alper's disease. Caleb only got to live eight years before his disease took him. Today was his memorial service. I have only gone to three funerals in the US, and all of them were for children who lost their lives too early. As sad as it is to say goodbye to a child, today I knew that there were no other place for me to be. This is what it means to be part of the Mito community. Memorial services will happen, and moms and dads will be grieving their lost children for the rest of their lives including us one day.

It was a beautiful service. We all got to write down our favorite memory of Caleb for mom Kelsi to take home. We got to hear beautiful words spoken about Caleb and see so many happy photos of  Caleb and his family. You could see the special bond between Kelsi and Caleb in every picture. Caleb's primary care physician, also one of Jacob's doctors, was crying throughout the whole service. And so did my Mito friends Heather and Angela. We were crying, holding hands, and hugging Kelsi and hoping that a little of the strength of our hugs would keep her strong as she's grieving.

After the memorial service, we walked along Colorado Boulevard looking for a place who would serve us wine in the middle of the afternoon. We found a place. We had wine, we had pizza, we had chocolate chip cookies. We ate and we drank, and we had good, serious, honest conversations. A few more tears were shed as we shared our fears and honest opinions about the shitty things coming with this disease. Things we have to face, things we have to live with. We shared warm thoughts for Kelsi, and hoping for strength tonight, tomorrow, and every hour from there on.

As we were hugging one final time in the parking lot, Heather said "you're good people". I was thinking that in the middle of this disease, this disease I don't wish on anyone, there are many very good people. Good people will help you through a heavy day, and good people will keep you going as grief hits.

Love, Maria.

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