A boy and his family

This is the story of a boy, Jacob, and his family. Maria and Joakim (Mom and Dad) and Sarah (Sister). The first time I met this family was at a mutual friends house for a picnic or a party, I don’t remember which. I arrived with my family (wife and two youngest boys). As I entered the house, I noticed a boy on the couch. What I noticed immediately was that I was uncomfortable. This boy on the couch was named Jacob, and he was surrounded by his family and his friends. So what made me uncomfortable?

I have thought about that moment many times over the last couple of weeks. Jacob passed away on June 19th. He was adored by so many…but none more than his family. And it showed in the way they lived their lives. That first afternoon I met them, it was obvious. But I never forgot the feeling of being uncomfortable.

I was uncomfortable because in that moment, I tried to see myself as Jacob’s parent. And I felt afraid. I felt inadequate. Jacob was born with mitochondrial disorder. Very simply, Mitochondria are the engine behind our energy, when they don’t work, everything is affected. By the time I met Jacob, he had already been dealing with this disorder for 6 or 7 years. What that mean to Jacob was that his movement was limited, his speech was limited and his ability to interact was limited.

I am a very verbal person, who finds it challenging to interact with even a shy person. Jacob’s interactions were very subtle…but they were there. Through his eyes, his smile, and his overall energy. I will be honest, the first time I met Jacob I didn’t know how to “change” my way of communicating. But as I watched, what I saw was a family communicating. That’s it. A family like mine. Interacting with each other and friends. And I saw myself, and my family and I thought “What if?”…

I have thought about Jacob every day since he passed. And I have thought about the lessons that in the VERY short time I spent with him he taught me. My fear and limitations were not his fear. His ability to love and be loved was not limited. The next time I saw him, it was complete different. Jacob had changed me. Communication is not about being verbal, it’s about connecting. Playing is not about being physical, it’s about being playful. A good family is about sharing love any way you can.

I don’t know what I would do or how I would react to mitochondrial disorder in my family. I really don’t. But if I was presented with that reality, I am fortunate that I know a family who should be considered the template for how to live life to the fullest, regardless of the circumstances you are given.

Thank you Jacob for teaching me humility, vulnerability and friendship.

Jacob’s mom Maria has a wonderful blog chronicling their lives.
http://momentswithjacob.blogspot.com/