The Journey (Part One)

**Because writing is my personal therapy, I spent a great deal of my summer jotting down thoughts and feelings as I navigated my mother's illness and what I knew was ultimately going to be the outcome of it. I left everything jumbled; it is a mass of scattered moments, thoughts and feelings, out of order and unedited. There are pages and pages. Rather than spend time sorting them into coherent blog entries, I will post them as is, one at a time, as I feel ready to put them out there. Please excuse my formatting; even my English Teacher Self is out of energy. This is more authentic anyway.**

Why is it so difficult for me to put words on paper when I am going through hard things? When life is good, words seem to flow easily from my fingers. When I am faced with tragedy; with stress and struggle, I sit and stare endlessly at a blinking cursor on a white screen. This summer, begun with such lightness of being, evolved into the most difficult summer of my life. And many days I sit, in front of the blinking cursor, staring.

I am losing my mother this summer. I am trying out that sentence, trying to make it feel like it belongs to me. I don't feel like I have lost her; I can't really even imagine it to tell you the truth. But I am losing her, actually, as I write this. I'm sitting in her room at Lutz Wing, in a pink corduroy recliner with my laptop open. The Mentalist is playing on the TV because Mom loves that show. She is alternating between sleep and awake, unable to talk to me, but still able to look into my eyes and curl the edges of her mouth slightly into a smile.

It's called Creutzfeldt-Jakobs Disease. At least, that's what the neurologists think it is. It's awful. I can't elaborate at the moment...that post was days ago and I still get mad when I read it so I will just let you Google it if you are interested in the details. Let me just say that it took first her balance, then her mobility, then pieces of her memory and then her speech. It hasn't taken her yet, but I know that is coming, and probably soon.

I've said all the things I needed to say to my mother...though I have to mention that I needed to say very little. The beauty of this whole experience, while hard to see sometimes through the pain of it, is that all the things that I needed her to know, she knows already.

I talk to Mom every single day of my life; I have for as long as I can remember. She knows all my stories, usually right after they happen. She knows what our routine looks like, what we had for supper, what story I read at bedtime or what argument I tried to mediate throughout the day. There is nothing that we have left unsaid, nothing left undone. I was lucky enough to share a bond with my mother that I know without a doubt is rare and unbreakable.

That's probably what is keeping me going at this point. From diagnosis to today, we have only weathered this storm for 33 days. It moved like wildfire through my mother's body, and there are moments when I can't believe how much has happened in such a short time. But even though every single one of those 33 days has been met with new challenges and limitations, we move through them more easily because of the deep bond forged over the entirety of my 41 years.

I know my mother on levels I can't even describe; she gifted me with insight into her childhood, her own life's challenges, and her personal dreams and ambitions on a regular basis. She was private to the world; she was an open tapestry to her family. As my brother and I sat with her one night in the hospital, telling stories and reminiscing with her, it occurred to me that our little family unit is interlocked so tightly together that nothing, not even death, will loosen those bonds.

I look back at some of the things I have been writing this month; lots of them are too hard for me to read. I think all the stages of grief can be found scattered throughout the entries. I am not sure yet which ones I can post, which ones I can say out loud. Maybe some, maybe none, who knows. I will let my conscience be my guide I think...they will tell me when they are ready to be told.

In the meantime, tonight I just hold my mother's hand in mine, look into those wide eyes and wait for tiny little twitch at the corner of her mouth that shows me her smile. She is preparing for what is next; I am learning how to exist without her voice. I am learning that I don't actually need it; she is in me already. I can hear it in my heart. It beats steadily in my chest, the strength and certainty of her love for me. For today, that is enough.