Wednesday, September 23, 2015


It's Mitochondrial Awareness Week. Hopefully, you have seen GREEN posts in your Facebook feed, and maybe you have learned something new about this disease we and so many families live with 365 days a year. This week, our community has come together to support each other and raise awareness.

This summer we got news that Jacob's brain has worsen over the last three years. Something that is to be expected when your child lives with a progressive disease. It is different though to just in general terms talk about progression versus actually see two brain MRIs next to each other, three years apart. I was told by Jacob's Mitochondrial doctor that this disease will never get better, it will only get worse. As I heard these harsh words, I was seeking in my memory for someone who had been writing about how it is to slowly see your child progress in front of you, and I couldn't think about a single person. Not a single person.

Social media loves the positive, easy wins. Social media loves Jacob as the Mito fighter and warrior he is, but that his body is slowly failing is just not as sexy as him once again fighting the impossible fight of life. Reality is that Jacob is both. Jacob is a million times more stubborn than his mom (and that says a lot), and he loves life immensely. But Jacob also has tough days. Jacob knows the ugly face of mitochondrial disease.

I have always been open about our journey, and in a world where we constantly want to set the next record, reach for the next promotion, and want our children to do what we never were able to accomplish ourselves, I am going to stay honest to Jacob and his journey. A journey that will not talk about the next record, but about a child who will continue to progress with his disease, but who will continue to be fueled by love - and lots of it - no matter what happens. That's our Jacob. That's my awareness for tonight.

Today was a good day. Jacob and I soaking in the beauty of the Botanical Garden over lunch.

To be continued...

Love, Maria.

No comments:

Post a Comment