The Waiting Words
The words I wrote while my Mother died.
We were talking logistics, my father and I.
Where we would meet up (near that one antique mall she loved over by the fruit stand, at noon), what food was available at the house (not much these days since it is just him, I’d have to shop when we got there), if we were bringing our dog (nope, shedding gerbarian shepsky could shed at home with a house sitter, their cats…er, his cats? The cats could rest easy), and whether or not the boys would want to ride to the house with him after we met at our determined lunch spot (we’d have to see, it might be too hard for them to see him driving without her next to him).
The conversation was light and easy. A little awkward, sure, but mostly it felt like nothing. Which in hindsight should have been a clear sign that something was off. This was never something he and I talked about after all. Mom and I were the ones that discussed the details of my trips home. Beyond that, she also always insisted on cooking whenever we were there so I “would get a break.” The idea of me getting groceries so I could cook for everyone would have made her irrationally grumpy unless I disguised it as a gift.
As the conversation neared its end, my mind played the sound of my Mother’s voice, echoing the same words at the end of every one of those calls with her.
“Oooh, I’m so happy you guys are coming. I can’t wait!”
It isn’t new hearing a similar phrase coming from my Dad, but it wasn’t the same.
It just all felt… wrong.
The moment I hung up with him, it felt as if I’d cut a final physical thread connecting my heart to hers. One last emotional safety line that I had anchored myself to in order to stay afloat over this last year:
If I didn’t go home, if I just didn’t go back and see that the grass had grown over her grave, notice that the scent of her lotion in the sink had washed away, or see my children wander the house without her gathering them up in her arms, she wouldn’t have to be gone.
I could pretend she was still in the hospital. Still too tired to talk or text. Or even just in the other room while Dad caught me up on his side of things.
I could even go as far as convincing myself that it was my fault we hadn’t talked recently. It was me that wasn’t calling. I was too busy with the kids, after all, and she always understood. She would know that, even in my silence, I was sending her my love. She always said she felt it.
But now, there was no pretending, no way to delude myself into believing any of it was real. Plans were made, schedules confirmed, groceries discussed. The kids had school days off and I had our dog and house set up with a sitter.
All we had left to do was wait—and that is what broke me.
The Waiting
If you have ever lost someone to cancer, you will know what I mean when I say “the waiting” is right at the core of the credo: FUCK CANCER.
As I approach the day that marks one year since her death, I have slowly gone back to revisit my writing from that time. My previously well-managed mind was no longer functioning in the way it should during those five months and the five or so that followed them. Long emails stood in for my long-form essays. My notes app was splattered with my short quips and thought spirals, my desperate attempts to externalize my internal conversations, and draft after draft of texts.
So many unsent texts in the beginning.
Each showing exactly where my anxieties were, and what I was too worried to share with my friends or family. What would they hear if I said something the wrong way or god forbid at the wrong time?
At first glance my thoughts and even my fictions appear scattered and disconnected to what I was going through. But there is a consistent through line. Psychology calls it anticipatory grief, I call it, “the waiting.”
Many of the fictions are unfinished.
It isn’t uncommon for me to have unfinished drafts. I will often take set aside pieces and roll them into a new work. But I can’t bring myself to do that with these. In fact, I actually started writing this whole article under the title “the chaos pieces.” My intention was to go through each of the fictional pieces and show how they tied together.
But when I grouped them, I couldn’t do it. They aren’t meant to be joined together. Each stands on its own as a testament to the solitary staccato uncertainty of each moment that could have been her last.
Each individual piece exists in its unfinished form with a diary of texts, emails, and random notes that all tell the rest of the story but are scattered through my life in notebooks, laptops, phones, emails and journals—all creating a diorama that only shows the whole picture if you look at them from just the right angle where they all magically line up in a row.
That viewpoint can only be found from the aching chasm that was carved in my heart from 102 days spent both fearing and patiently waiting for this torture to our family and her to be over from the moment I woke up to the last second before I fell asleep.
I have selected only one of these through lines to share.
I feel it shows an honest journey, and one that I am comfortable sharing in that it still honors my family’s privacy.
The starting point is a letter I wrote with the intention to never send. It came about the night after we found out how severe it was this time. There are two fictional pieces and one poem in this through line. I have placed them chronologically as I believe it shows a glimpse of where my mind was at in processing the experience. Where a daughter’s brain goes as she watches her mother dying and is unable to do anything about it. Unable to ease the pain, unable to change the world, unable to rewrite the ending her family was tumbling toward.
3/6/2024
I don’t want to write this.
And I know you probably don’t want to read it.
But I think I need to work through this to feel it and I want you to know how I feel.
I wish I could hug you and you could hug me. I wish that I could take this all away. I have wished to take this all away forever. Since you first got cancer.
I begged God to please not take you.
To give ME your pain, your illness, your cancer, so that I could bear it, I could hurt, not you. I told him I couldn’t handle watching my dad and siblings lose you, but I think more than anything, I couldn’t stand the idea of me having to live through losing you.
It was a selfish wish. Don’t let her die, take me instead so I don’t have to feel the pain of her being gone.
I wish I could fix this. I wish that there was something that I could do to make you strong again. Give you my strength, give you hope. But I don’t know how. You are the one who has always given me strength and given me hope.
I love you.
I have always felt so blessed to have you as my mother.
The only reason I am still here today is because of you. Through my darkest times, when I was alone and it felt like the entire world wished for me to be gone, I have only stayed alive because I knew the pain that I would bring you if I left. I couldn’t bear to do that. Not to someone who has given me so much. You have kept me alive and it is cruel and unjust and evil that I cannot do anything to keep you alive.
I feel so much like a child. I can’t lose you yet. I’m not ready. I don’t know who I am without you.
My earliest memories are of you. All of them. None are separate from your presence, your smile, your furrowed brow as you tried to figure out what in the world I was saying. Your hug and dream sprinkles, your stories and laughter. Our long conversations and even our arguments where we both bared our souls. All of it. Every moment I have had with you in my life sits like a gem amongst my memories. They are the loadstones of my life. They give me strength and love and courage. They hold me together. And I know that will never go away. No matter where you are.
But I don’t want to lose you.
I know you have always wanted me to find happiness and peace within myself and with the world. And I am able to hope for that, see that in my future because you have taught me to believe that it will be.
I love you Momma. Now and forever and always. I love you with my whole heart with every fiber of my being and every cell in my body, all of which exists only because of YOU.
Please stay. Please. I need you here. I can’t do this without you. Please don’t give up Momma. Please.
We need you here so we can give back to you all that you have given to us. Please don’t leave us.
You are the glue of this family. Without you we are just people. With you we are whole.
Please, dear God don’t take my mother from me.
I did send it to her
But only after she got me to confess nearly all of it in person anyway. She knew I had been holding back my feelings. She always knew. And she waited in the way she always did, with that quiet knowing tension until I finally spilled the truth of what I felt.
In the tumble of confession I agreed to show her the second piece I was working on when I was done with it. When I got back home after that first visit to see her after the diagnosis. That first visit where she still tried to get up and make me tea and bring me a blanket until I growled at her to sit her cancer having ass down and she laughed until we both cried.
This next one should be familiar to some of you.
I wrote it and published and unpublished it more times than I can count over the last year and a half.
3/8/2024
This next piece changed drastically between the time I promised to send it to her and the time it was done. But so did everything we knew about her prognosis. In the end, it turned into a plea, a desperate request for her to please not look back and second guess herself, not find fault in her choices or the choices of her doctors, to please look forward with hope and find strength.
3/16/2024
Stop;
All the "shoulds" of every moment do nothing to change your now.
Lay aside the anguish of the "would" and "might."
The "you" of yesterday was no weaker than the "you" today.
No less informed. No less a fighter. No less affected by its wounds.
It chose what it needed to get to today.
And now; you are here.
Do not fall to presumptions of what could have been if only you had seen.
Sorrow, held tight in hindsight, only weakens the strength of what can now be done.
There are no assurances to claim, no promises to protect against the ills that will be birthed as we compare the new to the once known.
For the perfect path is not defined by one step or stride, one dodged boulder or sharp turn; the perfect path is the one that brings you to where you may once more choose
to step forth to live again.
You are never where you are meant to be; where you are now was yet to be formed.
Meaning is found in choice, not chance.
But it is no mistake that you are here, for this place was formed both for and with you.
The place where yesterday set you down, held you in love, and pressed you forward into
now as it bid you
Go.
By the time I sent it to her, I knew deep down that she couldn’t go through this fight again, it was too much this time.
But I couldn’t say that to her.
If she wanted to stay and fight, I wanted to be there by her side and cheer her on. I know that was true for all of us. And we could see she didn’t want to tell us she couldn’t do it anymore. We were all stuck waiting to see who could ignore reality the longest before we caved to the truth.
A brief warning before the next one: This was my brain on survival mode. A scream into a science fiction void.
3/18/24
Abundance
I wish I could start this tale with something quippy, sharp, or maybe mildly prophetic; but it seems to me that doing so would imply that I have a firm grip on the reality of what I am about to share—which is something I very much do not have. I don’t have a concrete interpretation of its meaning, nor a prediction of its significance; and I sure as hell don’t know what this all means when it comes to the future of our species and planet. Quite honestly, I’m less than confident of my ability to explain any of what has happened coherently let alone artistically. But here we are. You, a serendipitous journal peruser and me an isolated member of your species forced to “document my interpretation and emotional reaction” to my daily adventures with the They. Please take all that I share with a significant boatload of salt.
Alright. Disclaimer is now out of the way. All that is left is for me to apologize ahead of time for my inadequacies—I am sorry; and now we can begin.
Day 0:
Yes, day 0. Just roll with it.
So. The day before my …
abduction? Upload? I don’t fucking know. Before whatever the hell this is happened, I was fine. Well, not like fine-fine. But normal fine, middle-aged-American-living-through-a-pandemic and a government shutdown fine. Which I guess isn’t exactly fine in the general sense of the word, but it’s not like that stuff all happened over night.
Being in a slow-burn national catastrophe isn’t all that different from living in a slow-burn personal catastrophe. Everyone has them so it’s just normal to be struggling.
I mean, I guess I was probably struggling more than most people. So there is that. But that’s only because of family drama and some medical shit and crap like that. So I guess I was fine in an “atypical” but “still commo” sense.
Got it?
Probably not. But I’m moving on. This is supposed to be more for me than it is for you anyway…ow! Fuck..what?!
[communication disrupted; force quit; punishment administered; external initiation; 13:56:03]
Day 0 (Continued):
Jesus fuck. So apparently this journal recording thing is “not for my benefit.” And apparently those fuck faces are listening as I type it. Yes, I’m talking to you, you little creeper. What the hell do you guys want from me? If you think I’m…Aaaagggh!!!
[communication disrupted; force quit; punishment administered; external initiation; 14:39:47]
Day 0 (continued fucking again):
Ok. So ground rules have been fucking established. This isn’t for me.
4/6/24
Muffins for Mom
I was done getting the muffins ready and in the oven, and went back to sit down on the floor and snuggle her legs. She started petting my hair and said that I used to snuggle her like this all the time when I was little.
I laughed and said that it all came full circle then. She chuckled and then started talking about how “this isn’t ever goodbye, this is just goodbye for now.”
I started crying of course and we just sat and snuggled in tears until Dad came back to sit down. We tried to talk more about how things would be when she died, but they went back into a discussion about how she really was still doing fine and they were hopeful.
I carefully pointed out that they’d been doing this for over two months now, two years really, or 15 if we want to be honest, and a lot of the damage is just permanent and that means a low quality of life and all the continuation of this is eventually going to be too exhausting for both of them to continue. Mom pointedly agreed then said that she is already getting so tired of doing it and it is getting to be too exhausting to continue and it is too hard on everyone and too hard on her.
I got the muffins out of the oven as they continued to sit with the truth out in the open. More and more spilled out. We continued to talk and got to the discussion about when they want to stop seeing people. Mom said it would happen when she decides that she is going to stop getting blood transfusions to keep her stable. She doesn’t want visitors then. And that she would make that call whenever it looks like things aren’t improving or she decides it is time. Dad agreed and said that it was Mom’s call, but they do believe it is going to be soon.
This oddly lead to a conversation about verbal processing and empathy vs sympathy and well wishes etc. and how everyone is different. Mom said she really cherished everything that us kids had written to her over the years deeply and that she really appreciated what I had written her recently. I joked that that was good because I had run out of more to say (since she had joked earlier about most people not knowing what to say).
She laughed which felt like an accomplishment. I tried to explain how for me, I feel like there isn’t much to say anymore but that what I really wanted was to just be with her before she was gone, that I wanted connection. So, sitting and talking or doing something for her—it all makes me feel like I am able to still have connection to her while she is here. I thanked her for letting me make the muffins because that action felt like showing her how much I love her rather than just verbally saying it.
She sad-smiled and with sincerity said that all of us kids have always showed us our love for her and that it meant the world for us kids to be there yesterday. For us to come and stay and take care of her. For us being able to do that despite everything. That it meant so much to her and that she knows that it must have been hard because there was a lot not worked out beneath it all, so it meant even more that we did it.
I told her she was more important to all of us than any of that drama and that all the unfinished stuff can be resolved another time. We were silent for a while. Or rather, Dad and her talked about something that I’m not even aware of actually hearing while I sat silent with her. Me hugging her legs, her stroking my hair.
Eventually it became time to say goodbye. I said my thank yous and love yous and she said her thank yous and we hugged a long time.
She said, “It’s going to be all right. I’m so proud of you, you are such a good person and a good Mom.”
I laughed through my tears, and said if that was true it was only because of her. She started crying harder and said quietly, “thank you so much for saying that.”
She then said she loved me so much and that everything would be ok. That I’d always have her in my heart. That she wasn’t leaving us not really. She then hugged me even tighter and held me back so she could look me in the eyes and then gave me kisses on the cheeks. We hugged and cried some more and then Dad asked if she wanted to walk me out front. She said yes. He helped her to her walker, she let him, but only used him and her walker as much as she needed—no more.
She waved to me from the porch as I drove away. I made it three miles before I had to pull over.
It hurt so much to know that I would never see her again. I understood her choice.
But it hurt.
4/10/24
Pounce goes to the Pool
Pounce woke up to a sunny summer day
Hello?
It was the kind of day that made Pounce want to go swimming.
I mean, yeah, I guess so.
Pounce couldn’t wait to go to the pool!
Actually, you are right! I doooo want to go to the pool.
So Pounce left for the pool.
What? Hold up.
I said, Pounce left for the pool.
Hold on narrator person, I can’t leave yet!
Why not?
I just woke up!
Yes, we’ve covered that.
Yes, but—
Quite well if I do say so myself.
You did a nice job, but—
Thank you. I did. Now *cough*
“Pounce left for the poo—!”
“STOP!”
…
“Pounce cannot leave for the pool without getting dressed!”
Oh. That is a fair point.
I’m waiting.
Right, sorry. And so, Pounce got dressed for the pool.
There ya go.
Pounce put on their swimsuit, the rashguard, and their goggles and flippers.
Not the flippers.
And then Pounce took the flippers back off because…?”
I can’t ride my bike with flippers on.
Because it is unsafe to operate a vehicle while wearing rubber flippers on your feet. So Pounce put on their flip-flops instead and grabbed a towel and sunscreen.
Hey! Nice job. I would have forgotten about those.
Yes, thanks. Now! Pounce left for the…
Pounce facepalms
…the pool…
Pounce stares at the narrator and points at their stomach.
… but first they go and eat breakfast!
Pounce shakes head and crosses legs.
Oh! Yes, well. And also take care of some personal concerns in the bathroom. With the door closed?
YES!
With the door closed.
It is taking them a looong time
No it isn’t.
So long that they might not have time for breakfast before they go to the pool.
Why’s that? The pool is open all day.
Because they still have to go to school today even though it is a sunny summer day.
What! Today is a school day??? Why did you even suggest the pool!?
Because I didn’t want to make a book about you going to school. We already wrote that one.
Pinches nose.
What is wrong?
Nothing.
Come on.
No.
And then Pounce told the narrator what was wrong.
Glares. You got my hopes up! I was all excited about going to the pool. AND I’m hungry and now there isn’t even time for THAT because now I have to change into school clothes.
Oh. I see.
Next time, can we talk about these plans before you start having me try to do them?
Of course. Next time I will do that for sure.
Great. Now, can you help me get ready for school?
No.
?
I will do a montage.
😱
Pounce realized they had to go to school so they quickly packed some school clothes in their backpack with the towel and goggles and sunscreen (which they had put on in the bathroom)
Nice!
And then they ate a yummy breakfast that had all sorts of their favorite food and made them feel very satisfied but not too bloated to go swimming.
Haha!
They raced to the pool on their bike going faster than they had ever gone in their life!
Weeee!!!!
And when they arrived they realized that they had gone so fast that time had rewound itself! They had a whole hour to swim before they even had to get dressed for school.
Awesome.
Pounce was happy?
Looks at narrator and walks up to hug page.
Yes. Pounce was very happy.
After an hour of fun, Pounce got dressed for school.
“After showering!”
After showering of course. They were so happy that they had gotten up early to swim that day that they decided to do it again tomorrow.
No. No no. I decided to do it Saturday when I don’t have school.
Ah. Yes. That makes more sense. They decided that they would do this again on the weekend when they didn’t have to rely on narrator trickery to fit it in before school.
Smiles.
4/21/24
She called
Too weak to talk
Or to understand.
I heard her cough
heard her try
“tell the boys.
How much I
love.
So much.”
I heard a cough
Then a cry.
5/1/24
I feel her dying
I think it is starting now. It is 7:45pm. May 1st. For the last hour things have felt dissonant and hyper emotional. Something has shifted. In me or in her?
5/9/2024
Updates!
Dad called me to tell me about her being in significant decline and in pain and needing to go on a morphine drip. It was a hard update, but not unexpected. But then a couple hours later he texted me that he had a surprise for me and wanted to call. When I answered he said, “Here, one second.” And then held the phone to Mom’s listening device.
In between coughs, we had the following conversation:
Mom: Hi, honey!
Me: Oh my gosh! Hi! Oh, mom! Hi!
Mom: It’s so good to hear your voice.
Me: It’s so good to hear YOURS!
Me: I love you so much. You will always be with me.
Me: You will always be with me. I love you so so much, Momma.
Mom: [after a long bout of coughing] You are…I’ll see you soon.
Dad: She can’t say much more than that.
Me: that’s ok! Oh my gosh, thank you Dad. Thank you so much.
Dad: You’re welcome. She wanted to hear your voice one last time before she was put on morphine since she’ll mostly be sleeping now until…until she goes.
I then thanked him again but I was bawling so he let me go.
5/11/2024
The Last Mother’s Day Message
Hi Momma,
There is one thing that I don’t believe I have said and I think it is something you need to hear.
I will be ok. We will be ok. All of us will be ok.
Because you have shown us how to be.
You have lived in love, shown us how to inhabit it, exude it, and find it in every moment and carry it forward.
And we always will.
Because we will always carry you in our heart, mind, and soul.
I love you so much Momma. I feel so blessed to have lived in your light.
I love you, we love you, and I will see you soon, in the garden of love you have grown in my heart ❤️
Your Cayse
5/21/2024
Mom passed last night around 10pm. Two days after her 64th birthday. I’m not really able to talk about it yet. But my heart needed you to know.
They’ve already posted her eulogy.
The reason I wasn’t able to talk.
The cruelest part of ‘the waiting’ isn’t the waiting itself. It’s what comes after. This is the reason I couldn’t bring myself to talk about her death or process her death for so long.
After 102 days a large part of me was begging for it to be over, wishing for it to just be over. And when that moment came, a wave of relief washed over me at the same time that the gaping ache of loss ripped through my heart. The disgust and guilt that came with it was palpable and all-consuming.
It created its own layer of complexity to grieving her death. I had to process and grieve the experience of what we all had gone through before I could even truly grieve and process what life was like with her before the cancer came back.
I believe in a way that is what my brain was trying to do for me with the fictional pieces. In hindsight I don’t find it all that odd that in the middle of feeling like everyone was denying the truth I wrote Abundance, a fiction about someone being abducted and forced to give an account of reality in a way that some unseen overlord wishes them to if they want to avoid pain.
I also don’t find it all that odd that I wrote a children’s story, a genre she always loved to write, about a child who is gifted a chance to rewind time to do something they love after I saw her for the last time.
Nor do I find it surprising that only a few weeks later my mother tried to call out to me over the phone call I was on with my Dad to say she loved my boys even though she could barely speak and that I only recorded it in my journal myself in clipped sentences that eventually became that poem.
The fact that some of these pieces came in prose, some in epistolary narrative, and some in pure chaotic fiction is a perfect time capsule of how my neurodivergent brain works when forced to wait.
My hope is that this article will bring some level of comfort or camaraderie to those going through it or who have gone through it. I also hope to give a clearer picture to those who have never experienced it exactly what this process is like so that fewer people will approach someone living through this hell and say,
“I know the waiting is probably hard, but at least you can be thankful they are still here with you.”
❤️😭🫂❤️