Each family who walks this journey has likely suffered at least a few things in common, and much more that is very different from one another.
Yet, each of us has suffered that moment where we all felt terribly alone.
Sure, you can read about Mitochondrial Disease at the UMDF, or MitoAction. You can ask a zillion questions of your Mito Specialist and drive their nurses nuts with incessant questions, but no matter who you reach out to, no matter how many questions you ask, there will be that moment(or many) where you feel more alone in your fear,confusion, anxiety,and your pain then from any other challenge you have faced in your life.
At that moment, the immensity of what lays before you with caring for a child with Mito, or being a Mito patient was so overwhelming I cannot possibly write well enough to describe it.. but if you have been there you know what I mean. It is different then depression. Different then anxiety. It is this incredibly perplexing feeling of everything and nothing, of losing control but being forced to have more control then ever. Where you are suddenly no longer the family you thought you were. Where suddenly your own extended family looked at you with either such pity it took your breath or as if you had grown two heads. You wake up confused, it doesn't even feel like the same universe, each moment you battle to get your footing to move forward like everything is normal, Where you dare not mention the word "Mito" to your friends one more time because you know they will stop answering your phone calls because they cannot stand hearing about it one more time. When you know each Dr. appt, each little cold, each dental appointment were about to become epic battles.. Where your dreams were stripped from you so quickly you barely blinked and they were gone.
It felt like the end of the world for me. My nerves were shot. I swear I could not remember how to put on my shoes. Where I could not look at anyone without a horrid feeling that I might sob(I don't cry, like ever, well maybe every 10 years or so, so the feeling of bursting into to tears is more horrifying to me then falling off a building)..
I was so alone.
What was in our future? Would she finish college? Get married? Even date? Ever even drive? What type of friends could she have? Could she grow into a complete person when her body was broken? Who would love her the way I do? How would I feed her? Who would understand? How would we get her through the relentless appointments? What did it all mean? Would she get worse? Could she get better?
Then, when I thought for sure that I truly was alone,alone and lost, I found a blog.
I started searching and finding more and more Mito blogs. Each one I read offered me comfort. For the most part, no one else had the same journey as Abby as far as the Mito goes, but emotions, well those were written all over each entry. Those I could relate to... I finally knew I was not alone.
All with very different approaches to handling this disease. All with different cultures, different values, religions. Yet, we all were reaching out to not be alone.
Writing the blogs to share our stories, our children's stories.
And many many more.
Each post they make, filled with the pain, the joy, the knowledge and especially the day to day basics is a gift.
Not only does it help other Mito patients, but Mito patients in the future.
Blogs are what keep Abby and I moving forward. Trying new things. Accepting new changes in her body with grace. Accepting ourselves and creating a new life around this new journey.
Though the large organizations do so much for all of us, the families that blog truly gift us, they keep us all sane, and make sure no one has to walk alone.