"I’ve been thinking whether I should post this. I’m normally an upbeat & positive person.
Many people don’t understand the term “anticipatory grief.” But, we’re living it. Although we’re Christians, we are still in the human form as God created us. AND as humans we experience emotion as we live life, make choices, and deal with the reality of life and death. Parkinson’s is our reality.
I choose to be happy or as happy as I can be under the cloud of a mean disease that is stealing Tommy away from me and us as a family. Tommy has fought this disease, but the more it breaks him down, the harder I work, not to save him but to offer him the best quality of life that I can. We are so blessed too! We are all choosing to deal with our current situation in various ways. No person is the same.
People say I’ve changed. It’s true. I cry easier, love fiercer, hurt deeper, get angrier, and realize I am split in too many directions not of our choice. This causes a loss of people in our life who don’t understand or see the whole picture. Lord knows I’m not perfect. At times I’m distracted as my focus is on this man I’ve loved for so long. It takes a LOT of energy and effort to even function while life continues to go on around us. No pity party is currently in progress.
But, as a couple we’ve missed out on a lot. As grandparents we aren’t able to be an integral part of the youngest grandchild’s life. That too, is not of our choice. I can’t get out as much anymore either and losing myself is a battle I’m waging against everyday. My focus right now is on coping. I cope through throwing it all out there to the one who knows all! God knows my ache, sees tears that others don’t; He knows my heart, anger, hurt, fear and loves me in spite of myself. Tommy does too and for that my gratitude is endless!
On the outside looking in, people “see” a controlled, clean & happy environment around here. It is. But what people don’t see are the times when we are exhausted, frustrated, and weary. People see brief glimpses or bits and pieces of a picture puzzle that only we are living.
We’re humans, who err everyday, but keep on keeping on because of hope and determination, and mostly love. Because we love doesn’t mean we don’t experience ALL of the other emotions and react too. We are in a constant “fight or flight” BECAUSE of the struggle Parkinsons and Dementia creates, while attempting normalcy.
If I’m not myself, forgive me. If you want to be a part of us (as we are) call and come by. We’re the same at heart, just coping, struggling, laughing, loving and it seems, always eating!"
Edie's words share a truth no one wants to live or experience. Sadly most of us will need to be here at some point in our life... grieving a living person suffering from cancer, heart failure, a degenerative disease, a stroke or a long term recovery. It places us right there, riding shot gun with vulnerability. Take note that these feelings are real and valid and need to be walked along side with honesty.