I haven’t written a lot about this time in my family, this time with my mom. I think probably because it is a feat in itself to live through this.
I am also hesitant because I am keenly aware that it is not only my story. It is my brother’s story and it is my grandparent’s, aunts’ and uncles’ story. Mostly it is my dad’s story and my mom’s story. And for everything that I am feeling, I know that I don’t have a clue what this must be like for them, for them to wake up every day knowing that this is their last chapter together.
I am conscious of how this is not only my story to tell.
I am also aware that for everything I am walking through, so many people have had this happen to them. And I don’t want to say anything that might hurt or alienate someone who has had a different experience. I am conscious that the act of recording everything could, if done badly, cheapen the reality of this kind of loss.
But for all that, I still feel the urge to write it out, for myself and for others. Because for all of what this season is for us, it is bigger than us too. In the midst of the sadness and exhaustion, there seems to be this voice rising up and an arm pointing out past the crowd, like John the Baptist, pointing to what we all desperately want to look for.
“See? There. Look at Him over there. Just look. What’s he doing? What is he going to do? “
Mom is hearing that voice. Even in the clamor and confusion, she keeps pointing up and out past herself – in every conversation we have, she always adds, “But God was there.” “ But I knew the presence of God here.” “But He spoke to me.” “But Jesus calmed me down.” And if for no other reason than to be that arm pointing to that hope, even when I don’t feel it, I still have write it out.
For anyone who might not know, mom has terminal lung cancer—that small percentage of totally random lung cancer not caused by anything environmental. It was discovered at stage 4 and chemo was an iffy proposition from the start, even from the oncologist. They told her she could do it and it might give her a few more quality weeks. Or it might not. It was up to her.
That is neither here nor there anymore as her body has since developed a blood clot in her good lung, greatly diminishing her capability to breathe and function, let alone recover from chemo.
So this is where we are at – all of us. Watching this 61 year old, spicy as hell woman, shrink before our eyes, sitting in one spot for hours a day, sometimes able to smile and talk and laugh and sometimes struggling to breathe. A palliative nurse comes most days. Mom is surrounded by 80 feet of orange and clear plastic tubing, connecting her to oxygen 24 hours a day. We are getting used to not tripping on it as she moves around the house. We all call or visit her everyday and ask how she is. I know she feels pressure to say, “I’m doing alright, I’m doing better, its all ok.” And I know that we desperately would love for those words to be the truth of the situation. But we call her everyday, knowing that each day is one day closer to “that door,” knowing that she feels awful – more awful than we can imagine – and we call, inwardly hoping, and mostly not knowing what else to do or say. We call and visit and sit with her because that is what there is to do.
Its been 4 months since we heard the news on Christmas Eve. All the emotions have crowded at the door and then moved on in. Fear. Anger. Sadness. Exhaustion. Grief. Confusion. They surface and then submerge at different times on different days. I find I can be fine, even happy and engaged in one setting, and then a complete zombie an hour later. I just can’t balance all the things I have to do right now. I’ve heard grief is like this. I’ve heard that it’s ok to crumple. But it feels scary and panicky. I feel like I can’t let go because then I won’t have anything to hold on to. And I feel like stakes are high. I have this shrieky voice in my head that says, If I let go, what will happen to the girls. Who will feed them? Who will make sure there is enough toilet paper in the house? Who will make life normal, life good, how will life be life if I fall apart?
It’s mom. I mean, its MOM! She has driven me completely bonkers. She has made me so angry and incredulous. She has loved me without condition. She has said the most perfect thing imaginable when I was so incredibly sad and confused.
Mom, my tiny brunette mom, is the connection I have to this world – she is why I am here, like a lifeline to the earth, she is the connection through which I am rooted in this time and this place. She is the person who cares about my kids as much as I do and gets the way I worry about them. She is that safe person who sees them in their honest awfulness and their deep beauty and desperately wants the best of love for them in this world too. One day, while away leading a retreat, it hit me that I don’t want to do this, parent, without her. I’m not sure I can. I don’t want to maneuver my way through the world with these two girls without mom’s voice to calm me, to help me, to remind me why they are amazing. And I collapsed in the woods from the impact of knowing that day is coming.
Every time I talk to her I can’t help myself from thinking, “How much longer will I have this?” When we called her on my daughter’s 7th birthday and she sang happy birthday to her over the phone, I had to leave the room – her gentle voice whispering through the phone connecting with her grandbaby – I couldn’t help but know this was the last time this would happen for E.
Day after day, the realization of the hole that is coming, that is even now being hollowed out in my heart, hits me in new ways. And yet we still have to do life, we still have to keep going. That is the crazy bit of death. That life surrounds it still, infusing it with meaning only because we have to somehow figure out how this death is a part of our life.
We are doing it though. We are being WITH each other. It is a great gift just to BE with mom. We have spent some nice hours together. We have meandering conversations about the best way to fill hot water bottles, then moving into her end of life directives and where she wants to die. Then onto what colors look best with her skin color and then we talk about the songs she wants at her funeral and then, very importantly, if there are new Father Brown episodes on Netflix.
The hard stuff has to be amongst the just-plain life stuff. That is the gift of BE-ing, the gift of BE-ing WITH each other. That we can sit with all we have to sit with and let this knowledge of her death nestle amongst the other gifts of life too. We don’t have to deal with death as we deal with tax season—it is not something you can just get done. Its not something you can really do anything about to make it go away, to make it go away sooner. We can, though, let it make a home among the menu planning and writing birthday cards and hugs and watching Father Brown and let it all be.
There is no way through this other than THROUGH this. Remember that bear hunt book when you were a kid… “We can’t go over it, We can’t go under it. Oh No! We’ll have to go through it.” **
Through THIS. And maybe the gift of doing this with little kids in the mix, for me, is that I can’t escape it. I can’t run away on the weekends, I can’t live a different life. I have to stay here and go through this. I have to wake up and call mom and hug the girls and make lunches and break up fights and clean the sink and go on field trips and learn how to change the oxygen tanks and be alive and aware during the pain of it all. And I’m not sure if I am doing it well. I am missing details and I am tired and I keep forgetting to call someone I keep saying I’ll call. I forgot to sign the girls up for soccer in time. I have 17 junk drawers…. I watched a season of The Good Wife in 4 days….. I am living through what to do when all of it does overwhelm me, when the girls are screaming in the car, in traffic, in 30 degree heat and I suddenly have a panic attack or when I accidentally kill a bumblebee I’m trying to help escape the house and I can’t stop crying about it. I am noticing what I need to do when it is too much – sleep, look out the window, be alone, be with people, read, write, ask for help.
And I am seeing gifts too, gifts like how community forms and grows in unexpected places, and how a meal given in a bag in the schoolyard grounds me and helps me breathe more than any mindfulness exercise. Or how the kids are so excited about the pink trees everywhere on the way to school. Or how many amazing authors there are in the world and I just need to read them all. Or how mom and I just get a free pass to spend a lot of time just sitting together. The gifts of this time are shimmery and bodily and they wait for me. They wait for her. It’s a grace.
Mom keeps talking about God. In the valley of the shadow of death, she is not alone. If there is one true fact of this time, it’s that she is not alone. He is palpable to her. When she was in the hospital around Easter, and she was closer to death than we knew, a dementia patient wandered into mom’s room in the middle of the night. And mom woke to voices yelling in the hall and this person looming over her in the dim light and mom panicked. She was exhausted, coming out of a drugged sleep, she could barely breathe and was tied up in so many tubes. She didn’t know what was going on and was fumbling for the nurse call button. And God pressed into her. In that moment, she heard His voice. Tangible, knowable, there. “I am with you” she knew in her bones. “You are not alone” she knew in her racing chest. “Don’t be afraid,” He said to her mind, to her body, to her deep soul. “You are always mine.”
Before she even knows to lift her head, she is surrounded. Before she can think to say the words, she is held. All the questions and hurt and joy and exhaustion of a life lived are heard, are covered, and are brought in close to the beating heart of the love she can’t seem to shake. To the beating heart of a God who will always be her beginning, who will always initiate, who will always draw the best out of her with love, who will always call to her, inviting her to join him for an evening walk.
“See! Look at Him over there. Just look. What’s he doing? What is he going to do? “
He is taking away the brokenness of the world. He is putting things back together. He is sewing up what was torn apart. In ways that only great love and great suffering can do, he is present to the bringing back of ourselves, bringing us back to his heart, by bringing us back to each other. I can see his living heart of love for his creation, for even my little mom, gathering her up into a love that brings peace, like a mom gathers her tired child into her arms.
These are the gifts of this time and maybe they will be enough. Enough to keep me looking out for them. Enough to keep getting up and keep calling mom and keep loving my incredibly gracious husband and keep hugging those loud, just so loud, girls. They are enough to keep me walking through it, keep me sitting with it. They are enough to keep my head above water, anyways.
**(I was reminded of this book when our church did a sermon series during Lent , “ The Parable of the Tanking Economy”– the whole series, Worry, Fear, Loss, Lament , was good so if you ever get a chance….)
Jacqueline you are delightfully raw and this not only brings healing to your soul but to all of us readers as well❤️ Through the valleys we press in, understanding that we simply can’t make it on our own. It is in times like these that we depend on Jesus to carry us. In our weakness He is strong. A song that carried me through a difficult season is called “I am not alone” by Kari Jobe. I pray it brings you as much comfort as it did me.
Many of us are carrying your family in our hearts as well as in prayer. Know you are loved and never alone. We are here❤️
Jay & Kelly Coray
what can one say. your gut wrenching beautiful words, honesty and pain. we hold you in our prayers as so many do. thank you for sharing a very hard time in your lives. grief can be all consuming but He is there. even when we don’t feel it. journey on. Doug and Penny Harris
Beautiful writing Jacqui – praying for you!!