Several evenings ago, I sat in the grocery store parking lot and had a good cry. Truthfully, it’s not an uncommon occurrence. It is a safe space to process emotions. My car windows are tinted so folks can’t really see my ugly tears; I’m not at-risk for having one of my children witness these deeply personal moments; and I can sit uninterrupted for a few minutes while I let go of the swell of emotions I’ve been holding for who knows how long. After I caught my breath and was able to reflect on why I was feeling overwhelmed in that particular moment, I started writing about what I call “the great in-between”.
On the way home from an extracurricular activity, I asked two of my children how often they worry that it will be the last day with their dad. The answer didn’t surprise me as much as it reminded me how hard this journey is for all of us, particularly our children. The great in-between is literally the space between the moment we knew someone we love was sick and then waiting for them to succumb to that illness.
On that particular day in the Walmart parking lot, I felt the weight of walking alongside my husband and children in this space. None of us want to be here and yet, here we are trying to struggle and muddle our way through it. We are just waiting for the storm to come so that we can move through it. I see how it is impacting my sweet husband in his words of guilt, silent tears, and loneliness. I see the impact of the great in-between in the tears, anxiety, and negative behaviors of our children. I hear it in the heartbreak of their whispered prayers, and I feel it in each text and late-night conversation I have with several of my adult children, close friends, and family.
The great in-between is perhaps the hardest part of this journey so far. There is so much powerlessness in watching someone you love slowly fade away and not be able to stop it. They say you are always more tired at the end of a race than you are at the beginning and right now, we are tired. I am tired. Ben is tired. We are all doing the best we can to find steady footing and cling to the hopes of eternity. I get caught between praying for just a little more time and asking for the end to come quickly. I am consistently asking Him for more…more faith, more patience, more understanding, more wisdom, more grace, and more resilience to be able to carry the weight of this space for my family. And if I am being honest, I feel totally inadequate most of the time.
In the book It’s Okay that You’re Not Okay, Devine states, “loss and grief change our landscape. The terrain is forever different and there is no normal to return to.” How do you navigate the changing landscape of grief and the changing landscape of neurodegenerative disease? How do you that as a wife and mother? How do you do that as a son or daughter at the age of 12, 15, 17, or 24? My son shared his fear, “every day I go to school, and I wonder if it is the last time I will see dad.” The great in-between stinks. In hospice, you often hear the words anticipatory grief. This is quite literally grieving for someone who has not yet passed away. You experience all of the emotions of grief – denial, acceptance, sadness, anger, joy, and more. It is individualized. It is powerful. And it is heavy to walk through. The great in-between is filled with this type of grief and so much uncertainty.
The tears I shed in my car that day were necessary for my journey through anticipatory grief and the great in-between. I’m working to find peace in this space. I’m incredibly uncomfortable here. I don’t like it. I wish we weren’t here. And yet, I know that I must pass through here. I know my husband and children must as well. I pray for grace and understanding during our most vulnerable moments, when all we have is hope that tomorrow will be better.
Thank you for praying…for understanding…for holding us up in this space. We love you.