I have someone in my life who walked this road of being a wife and caregiver of a GBM patient many years before I even knew what it was. It was a divine intervention that she was placed in my life to share her experience with me and give me words of advice that would lead me in decisions, give me strength in times of weakness, clarity in times of confusion, and a shield in times of difficulty way before I even knew I’d need it. Last night was another time that her words were powerfully therapeutic to me. She expressed that she is a bystander and she is watching a train coming right towards me, yet there is nothing she can do to stop the train from completely running over me. She put into words exactly what I was feeling for me and for my kids.
We are standing on the train tracks and a train is coming and there is nothing I can do to brace myself for impact. I’m watching it head straight for us. Others are watching it head straight for us. They want to yell, scream, help….but none of us can do anything but watch it come. We will get up again, we will pick up the pieces, but for now all we can do is stand here and wait for the train. It will destroy pieces of us, taking away parts that we feel like we can’t live without. There are no options but to be run over and feel destruction. As hard as I try to prepare or to be ready, there’s nothing I can do to truly prepare for impact.
I haven’t felt this way the whole journey, this is a feeling that I have now – 32 months into the journey as he is on hospice and continuing to decline.
I see that look in so many people’s eyes of “oh honey, you don’t even know what’s coming” in those moments when I do have it all together. I see the joy and the blessing in this moment right now that I’m in. I choose joy. I choose to see the positive in the moment that I do have. I will usually greet you with a smile, and the peace that I’m showing is real in those moments. It isn’t me trying to be strong, or me trying to pretend like I have it all together. When I crumble, I crumble. When I’m fine, I’m really fine. Sometimes I fight back tears during a conversation, sometimes I’m all smiles.
I’m not naive, I know it’s coming. I see it coming, and it terrifies me. I know moments of unbearable grief are ahead. I have also experienced many moments of unbearable grief already. We will feel the destruction and our world as we know it will crumble around us. And then we will pick up the pieces, and we will survive a day at a time in the dark until we are able to see the morning again.
I share this to share how I’m really doing right now for so many people who truly love us, to be that beacon of light for someone else in the darkness of the journey, and to simply throw my feelings out there hoping it releases some peace into my life.
Seven years ago the kids, Mike and I went to a beach camping for New Years. I took this photo at sunrise on the beach during that trip. Today I added this verse to the photo. This verse has been one that I’ve loved for many years.