Monday, June 17, 2013

Sweet Jane

I attended the UMDF 2013 Symposium this weekend in Newport Beach, California - beautiful spot. I'll post on all the various details in the coming days, but one person left a huge impact on me and her name is Jane.

On Friday evening, they do an awards dinner for all the research grants and to honor the mito community in general. I was sitting with some new and old friends - all Leigh's families incidentally - and a woman snuck in a few minutes late and asked to join our table. We all readily agreed.

As we got to talking about mito, our kids etc. we asked the newcomer if she had an affected family member etc. She did, her daughter Jane. We asked her to tell us a little bit about her story and she said that Jane passed away about two years ago from mito, but they didn't know the diagnosis of mito till the very end. Jane's mom came to the conference to learn about the disease that killed her daughter.

I sat there dumbstruck, heartbroken and unsure about where to go from there. I think we all were. What an amazing woman to come to learn about something that doesn't necessarily affect her daily life. To put yourself through the emotional, physical, mental and social pain of talking about your daughter, learning more about mito and simply just being there.

I realized a lot in those few minutes of sitting with Jane's mom. I realized that I had no idea how to deal with death, what to say, how to act and then I realized one day that will be me - Jane's mom. Sitting at a table and explaining how your child passed away to total strangers and then dealing with the unsure faces and reactions. I also realized that people probably feel the way I did after I explain to them Will's diagnosis.

As the evening went by we learned more about Jane, saw pictures - of a sweet sweet girl with a short bob haircut and glasses. Of all the moments I've had the past few days, this was the most impactful moment and I will carry it with me for a long time. Sweet Jane, as I called her only in my head, Sweet Jane was still living on through this amazing woman - her mom.

The paradox of a woman who lost her child sitting with us at the table - all parents who will lose their child. I wanted to reach out and hug this woman for sharing her story with us, for showing us pictures and teaching me how to be graceful.

The night ended and Jane's mom retreated back to her room while we stayed behind to visit etc. I wish I would have given Jane's mom a warm hug, what an amazing woman.

Thank you Sweet Jane for teaching us all a lesson from above - the art of grace, wisdom and love.


  1. I think what people who have lost someone want the most is to be able to talk about them still, to share their lives with someone you guys probably gave her a gift, too.

  2. Lori, I'm so glad you have people to share this journey with you. Their strength and your strength together can make a difference.

    Just as Sweet Jane's mother taught you lessons, you have been a wonderful teacher yourself. Be proud of yourself and all that you do.