Where to begin (again)

I started to make a whole new blog dedicated to being a caregiver but the truth is part of me is afraid of placing too much identity into being BT’s caregiver. Truthfully I look for ways to maintain my own individual identity. Yes I am a wife and yes I am a mother and those belong to me but also as me being a part of another.  One of the things that has become clearer to me is the need to have my own identity because one day I’ll be on my own. I decided in the end to start writing here again since this is my personal life blog so there will probably be posts about what is like to care for someone with a progressive degenerative disease. But also about coping and sports and the things I do.

The truth is that life is hard for everyone. I believe in the universal struggle for most people, to be happy, to be loved, to find fulfillment. So I never believe that we are alone or that the thing we face is unique. But it is difficult and a bit unusual.

So since October 2016 when my husband at 38 years old, was diagnosed with ALS, he has gone from being a runner to being mostly wheelchair bound in the short time of his diagnosis. I’m not a doctor but this is an alarming rate to me. And in the meantime I’ve picked up so much of the slack but more than that I’ve gained another person to care for beyond our 2 children. My experiences as a caregiver are not unique but as we are well below the average age for an ALS diagnosis it’s been hard for me to find someone relatable.

Writing about it seems cathartic if I’m being honest though the details may seem uninteresting maybe to most. It’s been hard and continues to get harder. I don’t look to the future much anymore. My motto is Run the mile you are in. I try my best to follow that.