What I learned while becoming an orphan is that your whole life’s history is tied to your parents. Somehow the old house you used to live in (even if they no longer lived there in the end), the goofy 6-year-old version of you with your two front teeth missing, the summer nights on the porch with the crickets singing, the choir concerts and basketball games with loving faces in the crowd watching you, the teenage heartbreaks, the warm suppers, the familiar comfort of home… all start to evaporate, in a way.
You begin to wonder if it was even real, that life. Did I make all that up?
Because where is the confirmation of it? They’re gone.
Is that life something I only dreamed during a deep, restful slumber?
Is it just something I read in my favorite book? I don’t see the evidence of it anywhere in the clues I always had: the people who held every moment of my life with me.

I learned that losing your parents takes an innocence away from you that you can never get back. I look back at photos with my parents in them and see a version of my life that could not possibly ever exist again. A version of me that could not possibly ever exist again. A specific kind of joy and peace I can never attain again. Having those anchors keeps you deeply secured in a way that, no matter what happens, you know everything will be ok. But once the anchors detach, you’re just drifting. To where? How? Why?

I learned that you’re never prepared to lose someone you’re close to, no matter how it happens, how much time you’ve spent with them, or whether or not you knew they were going to die. My dad died suddenly - of course nobody is ready for that. But my mom? I spent all those months intimately caring for her and prioritizing her with the knowledge that she had the most incurable and hopeless of all illnesses, with the knowledge that we were preparing for her to die, and I still felt utter shock, panic, and disbelief when it was time.
What is happening? It can’t be?! Somebody save her!

What I learned while becoming an orphan is that you can’t know how grief really feels until you feel it. Some people sympathize better than others, but you don’t know until you know. I’ve experienced losses before, but never, until losing my dad, did I experience a profound and life-changing loss. It’s different. And in that I learned that you cannot predict what you’ll do or how you’ll react. Everyone processes grief and trauma differently. I think people who’ve never experienced a profound loss are disconnected from the sympathy, but it’s not their fault.

I know that now because I’ve experienced both. After my mom died, I sent a message to an old friend of mine who’d lost her dad sometime after high school.
“I’m so sorry I was not there for you when your dad died. I’m sure I said, ‘Sorry about your loss,’ but I did nothing! And I’m so sorry. I obviously did not have the capacity to understand. And we were so young. That must have been so hard.”

I learned my flaws in the losses. In grief, but especially in the caregiving role for my mom. Patience was tested. Strength was tested. Resolve was tested.
And I didn’t always do a good job. I know everyone thinks I did because they say that. But I didn’t. I’m only human.
When you are powerless and broken, the mirror is at its clearest.
Those flaws and weaknesses stared me in the face without even flinching.

“How to hold regret tenderly: I wish I would have done that differently, and at the time, I couldn’t.” -Syanna Wand

I learned that being intimately acquainted with the dying process makes you a little anxious about the future and the aging process. I was never preoccupied with aging until I saw what my mom went through. It was uncomfortable and miserable. And sure, what my mom went through was rare and unique. But, we all die of something. And rarely do we get a “comfortable” exit. It makes you wonder what it will be, what it might be like when it’s your turn, who will be there…

At the same time, I learned that it makes you a little less anxious to die. Isn’t that the next time I’ll see my parents? Is my mom with her mom? She missed her so much. I asked God if they’re together. I haven’t heard back yet. Is she with dad again finally? She ached to see him. Can I look forward to a reunion where we all recognize each other?

With that I learned that we don’t really know as much about the afterlife as we’d like. I remember being very bewildered right after my dad died: Where IS he? I need to know where he IS. Yes, I’ve always believed in heaven. But your mortal brain having to sort through never seeing someone again on this earth is perplexing. You want answers. Specific answers. I read the words of the Bible, my faith. But to be completely honest the answers are not obvious. Some of the details I want, it doesn’t give.
But, faith. Right?

I learned you can have a wonderful life full of many blessings and still hit the deepest depths of the darkest holes. Because I learned that despite a good life, you can feel like you don’t want to be here on this earth anymore, and that - importantly - that doesn’t mean you want to die, will try to die, or don’t care if you die. It just means you clearly see the triviality of much of this life, and you lose interest in anything that is not deeply meaningful.
But also, it means that joy takes a whole new meaning. There is always a deeper level of joy and gratitude that can be achieved. The joy you finally experience after such a time is sacred, and even spiritual. You think you appreciate and value your life and what you have now? There is always a deeper level to discover, and it changes everything - what you notice, what you value, and how you behave.

While becoming an orphan I learned so much about other people.
Which turned into me learning about myself.
When my dad died, I was blown away by the kindness and thoughtfulness I experienced. I was surprised and humbled by other people.
When my mom was diagnosed with her terminal illness, I did experience some of that again. But this time there was another side of the coin.

Part of me supposed I’d have a lot of support in the caregiving journey. Then as time went by, it was crickets. Being her sole caregiver while also trying to already grieve her, carrying her burdens she was too weak to bear, while being her pharmacist and nurse, still trying to be her daughter, all while raising kids and being expected to still live a “normal” life was brutal and incredibly, deeply agonizing.

Where was everyone? I thought they’d sent me caring sentiments of, “We’re here for you!” I looked around and saw only a few “hands on deck.” In fact, the only ones who did anything to actually help me were my husband - who was amazing throughout, my two aunts(one of whom is 2 hours away and the other 14 hours away), my sister (even from across the country I knew she’d do anything I asked), and one friend, who has since inexplicably stopped talking to me.

The illness, the grieving, and even the healing are peculiar times.
For a while I felt bitter about the absences in the trenches. I guess they expected me to just call them up and tell them how terribly I’m doing, and dole out tasks?
That burden is on me, too?! It doesn’t work like that.
…But maybe you can only know that it doesn’t work like that if you’ve lived in those trenches…

So I simply quietly carried those feelings around for a while, contemplating them, rolling them over and over in my mind. Something didn’t feel right about it. I couldn’t settle on them.

It’s called emotional intelligence, by the way,
to sit with those feelings and sort them out before rooting into them.

And after some time and prayer I learned this: Satan will try his best to control the narrative and be the teacher of the lesson.
I had seen a quote that said this: “Satan’s goal is to destroy your ability to love people because that’s what makes you the most like Jesus.”
Oh!

Nobody was let down by people worse than Jesus. But I don’t remember reading anything about Him keeping score.

So surely I can reckon that everyone has their own lives they’re busy with and focused on. I can consider that, truthfully, not everyone knows how to help others. And I can surely acknowledge and admit that there have been many opportunities pass by me to help someone in need that I did not take. So I’m not any better than anyone else, and the world doesn’t revolve around me.

Yes, it’s good to know who is going to roll up their sleeves and show up.
But you know what all that taught me, though?
It didn’t teach me to be bitter and keep score. It didn’t teach me to judge, analyze or criticize. It didn’t teach me to hold grudges.
It could’ve, I guess. It almost did.

But I allowed it to teach me to be that person who shows up.
It taught me to never take the road of passivity again.
It taught me to remember that what is most important is to continue to strive to be more like Jesus.
And it taught me to be more like the person I love who is gone.

I had always heard that expression: “Be the things you love most about the people who are gone.” It never really resonated with me until I started reflecting on the lessons I was learning.

You know what my mother was known for? She was known for being good to everyone. Too good, almost, because she didn’t take care of herself as good as she did others. She wanted to accommodate and comfort everyone. Even when I was a kid she wanted to be extra kind to my friends, and she especially wanted to be kind and be of service to anyone she perceived to be less fortunate. This was her calling and what people remember most about her: that she was so good to everyone.
If I can no longer be with her here, I can be like her while I’m here. That’s the best way I can honor her.

And after some time healing, I have been able to really lean into that part of my remolding. Taking the initiative to be that person.
She would be really proud of that. That’s such a source of comfort for me.

Then I learned one final, profound lesson.
The most important of all the lessons:
It became clear that God uses suffering just as He said he would.
I learned that it is indeed deeply and divinely purposeful.
It is the cocoon.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 5:3-5

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4

^“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”
-2 Corinthians 1:3-4

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” -2 Corinthians 12:9

I experienced these verses in real time. The transformative power of helplessness and suffering, just as He said. The obviousness of His power in my weakness.
Renewed vision, renewed feelings, renewed purposes.
I’m not the same, and I’m grateful.
Maybe I’m not a butterfly.
But I am being refined.
(Zechariah 13:9, Psalm 66:10)

It’s January 1st, 2026. The first day of a new year. I already spent an entire calendar year without you, so there is nothing significant about the date today. However, I have so many things in my head that I feel compelled to talk about, but I recognize that it is all a collection of things that only you would care about. Apparently, all the things I would have told you just stack into a pile in my head, waiting for you. Well, Ginger would probably care about the things. So I did call her this morning to tell her a slew of random things. But, it didn’t totally scratch the itch. Because it can’t.

I just really need to tell you things.

This morning, I accidentally started deep cleaning the kitchen. It started with me loading the dishwasher, but I was looking at the grime on the sink and realized it needed to be scrubbed. I did all that scrubbing and moved along the countertop and made it to the stove. I opened up the oven to look at the mess. A mess I’ve never seen before. I’ve never seen it because I haven’t had to. You always cleaned the oven. I’ve never cleaned an oven, so I never had to pay attention to whether or not it had aged, crispy food and grease stuck inside. So, this is where I would call you and ask,
“Mom, how do I clean an oven?”
Now, let’s not worry about the fact that I’m 38 and have never cleaned an oven. In my 20s when I did not live with my mom, I didn’t cook enough to really get it messy. Or even if I did, I bet she came to visit me and cleaned it for me.

But I can’t call you to ask that. So, I skipped the oven. I did, however, clean the drip pans under the burners on the stove. I’ve never done that before, either, but that one is more obvious. I took the pans out and put them in soapy Dawn water. I found a single steel wool sponge under the sink and started scrubbing the pans.

Immediately you showed up in the form of a scent I haven’t smelled in years now. I didn’t realize that warm water, Dawn, and steel wool was a scent. One that smells like “mom working in the kitchen.” So many times over the years I smelled that unimportant but distinct smell and it settled into a deep, dusty pocket in my brain. Today my olfactory bulb, amygdala and hippocampus conspired to revive it for me.

So, you already showed up for me a mere 10 hours into 2026. I was thinking the whole time I was scrubbing how, if things were as they should be, you would be here helping me clean. You actually enjoyed cleaning. Cleaning kept you busy and moving, made you feel productive. So many of my memories when I was a kid were of you cleaning. And they’re good memories, actually. Because it was strangely comforting to know you were there milling about while I was playing. I guess it was simply in the sounds and smells that said, “Your momma is here.” I knew you were there. Then you helped me keep this house clean and organized when I was an adult just because you wanted to. The signs of you being here in the cleanliness.

You know I don’t mind cleaning, either. And I know you’d be helping me accidentally deep clean my kitchen. So I missed you today.
When I was done with the drip pans, I felt so proud for some reason. I knew you’d have been proud of me, too.

That’s the thing… I still feel your absence in everything I do. My daughter [I intentionally don’t share the names of my children so even though it seems disconnected, whereas actually my mom knew my kids as well as I do, I say “my daughter”], was so sick in December with the flu. She was the sickest I’ve ever seen her and you’d have wanted to know about that. That was one of the times I needed you most. It wasn’t because I needed your advice. I didn’t. In fact, you and I often butted heads on how to approach my kids’ illnesses. (Me and Aunt Rosie had a good laugh on the phone the other day reminiscing about the time you and her gave me such a hard time about not taking my daughter to the doctor once when she was sick but I intuitively knew she was fine.)
But because I knew there would be someone to share an affectionate pity for her. It would have wrecked you to see how sick your baby girl was, and you’d have been worried to death. It’s not that I’d want you to worry, but I just wanted my mom here to stand watch over my baby with me in the same way I was.

That’s it! It just hit me.
I never had to shoulder a single emotion alone. Ever. You always shared in whatever emotion I was feeling. So it’s lonely, mom.

Anyway, when my daughter was sick I figured, again, if things were as they should be, you’d have gone to the store to pick up the groceries and medicine I needed while we camped out on the couch for an entire week waiting for the sickness to pass. There are so many instances where I can see how our lives would be vastly different if things were as they should be. If you and dad had moved here, had a little house of your own. Not gotten sick.

At Christmas I thought of it, of course. There’s no such thing now as going to visit my side of the family. We don’t have to make room for that. But, in another life, my little family would go to your and dad’s house. It would be decorated with more green, red, lights and shiny tinsel than Santa’s house at the North Pole. We’d have a big, filling dinner of turkey or ham, rolls, corn, sweet potato casserole, and maybe a blackberry cobbler, cherry delight, or punchbowl cake for dessert. You’d have cooked whatever we asked for. Then, you and dad would watch my babies open their gifts that you so thoughtfully chose. You’d have bought them the big things they wanted so I didn’t have to. And you’d have bought them too much. But it would all have been things they loved because you just knew how to do that, and it would have brought you all the joy in the world to see their eyes light up.

Anyway, I prayed to see you in December. What I realized was that I see you in anyone who does something kind for me. Because not only did you always do thoughtful, kind things for me, but you cherished anyone else who did, too. You always said, “You can never forget someone who does something kind for your child.”
So, you’d still yet be very proud of your son-in-law. The other day he did something thoughtful and helpful and I said to him, “Thank you for taking care of me the way my mom did.”

One of your friends from your hometown sent me a sweet Christmas gift that you had given to her. It was totally unexpected. She wrote me a letter and told me how she’d thought to send it last Christmas, but truthfully, she didn’t want to part with it. She liked it, and it made her think of you. This year she decided the kids and I might need it more than she did. It touched my heart so much. I know how much you cherished your good friends and you’d be so grateful for how some of them have been so thoughtful to me. I sent her back one of your pretty Christmas decorations so she could still have something to think of you when she saw it. But that’s when I realized that’s one way I find you when I’m looking for you. In the people who loved you and are thoughtful enough to show me love.

Mom, you wouldn’t believe what my son is going through. You’d get a kick out of it. Remember when I was about his age and I got an acute but serious bout of anxiety? I was a hypochondriac, constantly asking you about absurd things I thought could be wrong with me. I can’t believe it, but it has hit him now. Karma, I guess. I’m doing my best to navigate it but it would help to have your perspective. You’d remember it from the standpoint of a parent who had to figure it out, whereas my memory is of victimhood. Your boy really misses you, you know.

And my daughter. I can’t help but think almost every single day about how much you and dad would absolutely adore her. Dad didn’t get to meet her, and you knew such a little version of her. She is such a joy. She is so, so little, cute, and incredibly funny. She is so loving and sweet - you’d adore it - but she is also stubborn and strong-willed. You’d find it endearing and hilarious.

Both kids would have a very special place of refuge in you and dad, if things were as they should be.

But they’re not. And I recently wrote in a Facebook post on my birthday how my feelings about that have evolved since you’ve been gone.

I mentioned already that the couple months after you died were numbness. Once the numbness subsided and I had to feel feelings, they were heavy. The grief that overtook after the numbness was monstrous. I felt a depression unlike anything I’ve ever experienced. I truly didn’t know if I would ever feel joy again. I was worried about it. I operated on autopilot. From the outside I’m sure I looked “normal.” But momma, I was empty. I couldn’t help it. You’d have hated it because you never wanted me to feel that way. You told me that. You’d be so upset to know how much I’ve suffered over it. But I couldn’t help it. Any capacity I had to show up was so fleeting. I never knew if, when, or how I would have the ability to function decently.

I would think of you and dad and how me and the kids have to go the rest of our lives without you. They’re so little, my kids. My daughter isn’t even in kindergarten yet. You all didn’t even get to make it to her first day of kindergarten?! What kind of bullshit is that? Unbelievable. Mom, I tried to think of another word besides “bullshit” because you wouldn’t like it. But I can’t, because that’s what it is.
Anyway, I’d think of how you and dad are already gone, and I wouldn’t be ok.
I wasn’t ok.

I wasn’t ok for a long time. But I said a lot of prayers. I prayed prayers - I don’t even remember what I asked. Finally, not too long ago now, the fog in my brain began to dissipate.

So now I think of you and dad and feel a little momentary shock in my brain. I’m still actually in shock of this reality, and I hate it. I hate that you’re gone. I hate that I can’t do anything about it. I hate that my kids didn’t get longer to feel your love and get to know you. I hate that you all didn’t get to be grandparents for very long. I hate that I can never replace what I’ve lost and I have to feel a void for the rest of my life. I absolutely hate that things aren’t as they should be.

But now, I’m ok. At least I’m ok. Whatever it means.

I realized when my mom died that I was the same age she would have been when her mother died - 36. That really struck me. I try to imagine the parallels. It feels like the serendipity you find in an authored story. Maybe because it is. If there is anything that would convince you of such, it would be this:

My mom and dad had gotten married when they were 19 & 20 years old, respectively. My mom always desperately wanted to be a mother. For some reason, though, the children were not coming. 15 years into the marriage - fifteen years - and several doctors’ appointments later, nobody knew why my mom had never gotten pregnant.

So, mom and dad decided they would adopt a baby. They began the long process, and a lengthy time later in 1984, they got a call. “There will be a little baby girl born tomorrow. Come get her.”

One day they were hopelessly childless, the very next day - new parents! What a rush!
My mom always told my sister that she’d picked her out especially, and that was not untrue. When mom and dad went to the hospital to meet their first daughter, they walked by the nursery window and peered through the glass where several babies lay sleeping in bassinets. “Oh, I hope it is that baby right there!” mom said, pointing. Then as they waited alone in a room, a nurse brought them their baby girl- the exact one mom had pointed to! My sister actually tells her adoption story really well in a series of posts she wrote, beginning with Being Adopted, Part 1.

Just a few years later in March of 1987, shocking tragedy struck. My mom got a call that her mother had had a heart attack. Her mother she talked to every day. Her mother she loved and cherished so much. She died suddenly at only 59 years old, and it was beyond devastating.
Also in that same month, my dad’s brother died from cancer.
It was raining, pouring. A somber, distressing time.

The grief consumed my mom. It was causing her uncomfortable physical symptoms. The stress, anguish, and immense sadness had accumulated to…an ulcer? She visited the doctor. They did some blood work and came back to give her the results:
“You’re pregnant!”

Pregnant. After 18 years of marriage and attempts. At 37 years old.
She was immediately overwhelmed. “That’s not possible!” The emotions overcame her.

The doctor thought she was upset to be pregnant, and he let her know she had options to end the pregnancy. Quite offended, she tried to explain the shock of facing a pregnancy she never thought could be, at the same time she and my dad were facing insurmountable loss.

Shocked family members told her: “This is a blessed distraction from God to help you get through this time.”

Nine months after the losses my mom and dad had suffered, I was born. A “head full of black hair just like my mother’s,” mom always said, my middle name carrying the legacy of my grandmother I just barely missed.

A miracle, the family agreed.
Big shoes to fill, being the family miracle…
(I’m kidding.)

3 months before my mom died, she wrote me a letter. She wrote it because I was supposed to travel for a few days to do something very important to me, but I couldn’t go because I was caring for her, and she felt guilty about it. But my mom needed me more than I needed to do the thing I’d wanted to do for years. I was disappointed at the time - distraught, even, to be let down like that at a time I was already under immense emotional distress- though I’d never let her know I felt that way. Because ultimately, I knew what was most important, and I knew there would be more opportunities, but in the blink of an eye, there would be no more time with my mother. And looking back, I’d never trade the experience I missed for the letter I have now:

“My Precious Holly, gift from God,
The pieces of the puzzle now fit together. When my mom passed and you were born nine months later, after 18 years of marriage, you were truly a gift from God. He knows all things and He knew that I would need you…”

I do believe one of my purposes in this life was to take care of my mom. I didn’t understand it to this degree during the time, as we don’t always recognize how we are being intentionally written by the Author.
I know I was uniquely cultivated for and particularly positioned to be my mom’s caregiver. It was part of the story all along.

My mom always said that before she had any children and had a heart yearning to be a mother, what she really desired was to have two girls.
The Author wrote that into the story, too, and my mom lived a blessed, joyful, and grateful life with the girls she’d prayed for.

P.S.- My sister had moved to a far place that was right for her and subsequently her family, as is the natural manner of adulthood and life. Rightfully her first obligations are to the life and family she cultivated there. Honestly, I cannot imagine how hard it was for her being so far away from someone you love, the most important person for most of your life, during such a time. It was complicated and distressing for her to be unable to provide more help, decide when to purchase expensive plane tickets on the timeline of a very unpredictable illness, and to have to expect that each visit could very well be the last. That’s also a very burdensome position to be in. My sister offered to and truly would have done literally anything we asked. She visited as often as she could, and I’ve no doubt she carried an incredibly heavy weight for not being able to be here throughout.

I found this startling image this past May during ALS Awareness month:

Anthony Carbajal is an artist who has ALS. He asked AI to generate an image to depict ALS. I can tell you, it’s quite accurate. The binding of the body representing the decline in functioning of every part. The weight bearing down on the abdomen exhibiting the loss of the ability to even breathe on one’s own, not to mention the heaviness of living with the disease. The tape on the mouth signifying the loss of speech and communication. The gaunt figure realistically depicting the inevitable frailty. The man sitting on the ledge because that’s what the diagnosis is- a ledge you hang off of until eventually you go over in the end. And finally, the shadow behind him screaming, expressing that mentally he’s still in there, shouting the frustrations, pleading with his body to cooperate, lamenting, grieving…

Recently, we learned that the famous actor, Eric Dane, has ALS. His most recent interviews showcase his declining speech. My heart recognizes it, and I feel the pangs.

When my mom died, she weighed barely over 100 lbs. Normally a plump lady, she’d lost 80 pounds. Her shoulder and hip bones protruded sharply from her skin. She could hardly eat anything but soft, pureed food. Feeding herself was akin to a toddler who’s just discovered a spoon for the first time. All of her drinks had to have thickener added to them, making coffee or soda or water more of a syrupy consistency. Her speech was unintelligible to anyone except me, and even I couldn’t understand her sometimes. Sometimes we’d get tickled and laugh when I couldn’t understand her, but sometimes the frustration would hurt. The sound was like a stroke patient whose mouth was full. Usually very warm and conversational, she said less with each passing week. Her normally reddish-brown dyed hair was grayish-white, and so thin it was the texture of a baby’s hair. She could walk very slowly as long as she clung to her walker. It took an incredible effort for her to even simply adjust her position on the bed while resting. The muscles in her neck did not function and her head hung down permanently, a view of the ground or peoples’ feet for the last 7-8 months of her life. If she wanted to see the picture I’d hung, or even someone’s face, she’d say, “lift my head up for me,” and I’d physically hold her head up to the vantage point of everyone else. Doing literally anything at all was exhausting. Her attempts to simply brush her teeth were one of the most disturbing things I’ve ever seen. She couldn’t bathe herself, and even with my help, getting into and out of the shower, from the bedroom to the bathroom and back, was a marathon. She was unable to cough on her own, as those muscles didn’t function, either, so she had constant congestion. When the congestion got really bad, she had a very loud, motorized machine with an attached suction tube, and she’d have to suction the mucous out of the back of her throat. That sound is truly the most appalling, most invasive sound I have ever heard in my entire life. Then I’d be the one to clean the machine after it filled. Sometimes she’d sit on the side of her bed and rock back and forth. I didn’t know why she was doing it and it made me uneasy. She slept with a BiPAP mask that provided respiratory support; it annoyingly whizzed and whirred all night long every night. If the mask became dislodged, a loud, concerning alarm would wake us all. She struggled with constipation, nausea, and pain. She took up to 10 pills each day. I learned how to be a nurse, a pharmacist, and a counselor. Becoming the caregiver for your parent - the person you always viewed as the capable, supportive safety net - is very bewildering.

And these were all earlier progressions. Many ALS victims end their life in a state of complete incapacity to eat, speak, move, or breathe.

This person I cared for was my mother, but she didn’t really look like her anymore, she hardly spoke like her, and she didn’t really act like her, either. I lost her before I even lost her.

I had to think of everything we did or said in “lasts.” Our last Thanksgiving & Christmas. Which photo would be the last photo we took? Which visit from California would prove to be my sister’s last opportunity to see our mom? Which day would be the last that she could speak, or walk, or use her hands?

My kids struggled to understand why nanny wasn’t the same. They patiently tolerated an absence of attention because most of it was on my mom for months on end. They brushed off my harsher tones that resulted from my immense stress and sorrow. My kids still struggle to understand where she is and why she isn’t here.

Anticipatory grief… I’d never heart of it. It was a necessary but actually impossible task to understand the impending loss while cherishing what time was left. Anticipatory grief is an absolute monster of utter mental torment for an extended period of time, and the subsequent stress is debilitating.

One thing that might be surprising, though, is that I did not pray for my mom to be healed. I’m sure that sounds shocking. Well, probably at some point I mentioned, “If You will allow it, please let her be healed.” But to be honest, that was not what I asked.

Here’s the thing about the diagnosis of ALS: it is the most hopeless diagnosis. No treatments, no expectations, no possibilities of anything but decline and loss.

I think - maybe - it had to be something that I had to accept no matter what. I needed to know this was something incurable so I could begin the process of acceptance, because it would take me a long, long time to accept it. It was something I couldn’t deny, something I couldn’t fight for.

Everyone who knows me knows I’m a fighter in every sense, physically and mentally.

I believe God said, “You can’t fight this one. Only I can do this.” He forced my hand.

And I think my mom needed that kind of acceptance, too. For some reason, I think we needed to know that we couldn’t fight and we had to accept it.

I know people don’t get cured of ALS. I knew she wouldn’t. It wasn’t that I thought God couldn’t heal her. I just knew that He wouldn’t.

So. As it turns out, this ALS I’ve ruthlessly described is also gift. How can that be? I hesitate - but shall sheepishly say: I’m reluctantly thankful for it.

After my mom was diagnosed, I decided to read “Tuesdays with Morrie” by Mitch Albom. Morrie Schwartz, the subject of the book, was diagnosed with ALS. The part that stuck out to me most was when “Irv,” a colleague of Morrie’s, died suddenly of a heart attack and Morrie had attended the funeral. He came home and said, “What a waste… All those people saying all those wonderful things, and Irv never got to hear any of it.”

Because of ALS, my mom’s experience was the opposite. Upon her diagnosis, my mother received cards in the mail almost every single day. She received numerous Facebook messages weekly from people we haven’t seen in years. Childhood friends of mine and my sister’s reached out to us to describe the warm, welcoming impact my precious momma had on them. Old friends, new friends, family… all reached out to tell her they were thinking of her, praying for her, and saying the sweetest, kindest, most meaningful words you could ever hope to hear. It was wonderful and humbling to experience so many people cherishing my mother, who absolutely deserved it. She was well-loved because she loved well. So before she died, she was able to feel all the love she had always given.

And because of ALS, I got 10 months to serve and honor and love my mom before she left. It was the hardest, most brutal thing I have ever had to do, but also the most beautiful and special thing I have ever done. I had the chance to say anything I wanted to say, and to choose to prioritize her and spend time with her. Not only that, but she had the chance to prepare also for her transition from this life to the next. “I’m ready to meet Jesus,” she said.

I have friends who have lost a parent in a very sudden event. I lost my dad suddenly. I know in the depths of my soul that I would not have wanted that, maybe not have even been able to tolerate that, with my mother.

So yes, ALS is the most hopeless diagnosis. Yes, my precious mom did some suffering. ALS is a cruel thief, robbing its victims of even the basic functions of human existence.

But what she received in her time of illness, in her time of preparation to leave, was astounding and invaluable, even miraculous, if you can bear it.

And despite the anguish, it is not lost on me that it was still yet, in fact, a gift.

Dear mom,

You lied. Probably the only lie you ever told me. When I was a little girl and told you I was scared you’d die, you said the anxiety of the anticipation was much worse than actually losing you. I thought you knew what you were talking about because it had only been a number of years since you’d lost your own mom. You told me that so that maybe I wouldn’t worry as much and maybe it would soften the sting that wasn’t even real yet. Why suffer in advance for something that hasn’t even happened yet? I think you told me that, too.
I now know that was a lie; you being gone for over a year now is worse than any of the worrying I ever did. But I’m not mad about the lie. I would protect my kids with that lie, too.

Mom, I bet some people look at me and find me dramatic. I wonder if they think I should shut up about it by now. But you know me, I don’t care what people think anymore. I mean, I talked to you every single day of my life for over 36 years. I had you as my foundational support system for 3 decades. Now I’m supposed to be over it and have new habits and different expectations after only 1 year? No.

You know what’s crazy? We never talked much about what it was like for you to lose your mom, or about what I was going to do after you were gone. Those would have been good conversations. While you were sick, and even for a while after you died, I kept saying, “I don’t know why we never talked about this.” I regretted it. Still do. I know you didn’t want to make me sad (you told someone that), and I thought maybe I didn’t bring it up because I didn’t want to make you sad.
But that wasn’t it. And now I do know why we never talked about it. I figured it out.

It was because I wanted to pretend it wasn’t real. If we talked about it, then it meant you were really going to die, for real. It meant that biggest fear I could imagine as a kid was actually coming true.

I know as an adult the biggest fears shift to losing a spouse or a child. Unimaginable. I was thinking about when dad died and how sad you always were. It seemed like no matter what was happening, you still carried a sadness along with you. Joy was never fully invited anymore. I mean, I was sad to lose dad, too, but I think I still felt like I had a connection to him through you. But when you left, it was like losing dad again, and therefore both of you. I didn’t realize that would happen.

So now I get it. I bring sadness along with me in a little pouch wherever I go. Apparently, it is permanently attached, like it’s sewed on. Joy can come, too, but has to sit in the corner. Maybe get up and walk the room a little. But is never the guest of honor anymore.

I hate that. I’m scared. What if I’m always sad. What if I’m never able to fully feel joy again? Like I said, I’m sure it sounds dramatic. But there’s an explanation for it. I told someone the other day that it’s just that when you begin losing those closest to you, life seems so trivial anymore. What really matters? What’s the point of all this? They told me that they’d heard a lot of people who’d lost someone close express that feeling.

Not only that, but I get scared of what could be worse. It makes me scared to lose again. So I think about the “what ifs…” a lot. That’s heavy.

Also, something is always missing, and my heart knows it. That’s the other reason joy sits in the corner but can’t lead the room. No matter what is going on, even the best things, there is a little void fluttering in my chest. I know we should be sharing these moments with you and dad.

Like Thanksgiving and Christmas, for instance. They’re coming up. Last year were the firsts without you, but I knew I was still in an adjustment period of “navigating the first year after loss.” Now rolling into the second year? It’s worse because this is permanent and I have to face that realization. No holiday gatherings with “my side of the family.” Ever again. Even though my kids are so little. I mean, I know I’m always welcome with the aunts, uncles, and cousins, and I do take them up on the invites sometimes. But it’s not the same. You know what I mean.

I decorated for fall and Christmas last year, just like you always did, and I did fine. But this year I struggled with the motivation. I got half of the fall stuff up, started thinking about how you were the only one other than me who really appreciates those decorations, and then I just didn’t feel like doing anymore. I already don’t want to decorate for Christmas, but I will because you’d probably show up to haunt me if I didn’t.

The thing is, you always made an effort to make everything magical for us as kids, and even as adults, too. The cute little fairy lights adorning all the spaces, and the abundance of thematic decor. The warm and comforting foods. The crafty and creative ideas. Not just holidays, but even the ordinary, every day things were better because of you: the way you did everything seemed perfect, like you were a professional at everything. Now it’s up to me to create that feeling, and I don’t want it to be up to me. I wasn’t done letting you make life magical. I wasn’t done being your kid.

But I realized you did that for us growing up even before we ever appreciated it. I appreciated it then, but didn’t know it. So that’s why I care about and cherish that magic as an adult. I know you would still do that for my kids if you could, so I know you are expecting me to do that for them now, even if I don’t feel like it sometimes. I know for sure that there were many times you set aside your feelings to make sure you made the most of the holidays and the moments and just life for us. So I will, too.

But man, my kids are missing out on so much love. It hurts me so much to think about it. There was just something so special about your and dad’s love and support. It was unconditional and constant. It was so reliable and unselfish. I know, I know, at least they got some for a while. But it could have been so different. Sometimes I sit and imagine what it would’ve been like.

That’s what makes life so lonely now. So lonely. You all were always there. I’m still on the verge of tears all the time, but I just act like I’m strong. Probably not a surprise to you.

Momma, you wouldn’t believe what all has happened since you’ve been gone. So many things you wouldn’t even believe. Honestly, sometimes I’m really happy for you that you aren’t in this old, crazy world anymore. I know you’re not suffering anymore, and you don’t have to even fathom some of the terrible things in this world that would have hurt you. I know you told me many times while you were sick that you were ready to meet Jesus. And you meant that. I don’t know exactly how it all works. I know what we believe, but I don’t know what it looks like, how it happens, what we know after, or any of that. I so, so wish I did. It would help. But I do trust what we believe, so I know you are better now that you’ve ever been.

The other day Steele asked if you had a choice, would you leave Heaven to come back here to be with him. That was a hard one to explain, that nobody would leave Jesus to come back to this world, even though you loved him so so much and would love to be with him. I tried to help him understand that we can be happy for you while also still being sad about missing you.

To talk about how the kids have grown, all the things they’ve done, and how much I wish you and dad were here to see all of it like we expected would take its own day.

Tanner started his own business. You’d have lost your mind during the startup process! You’d have thought he was crazy, and he knows that. One day in the middle of the startup he asked me, “What do you think your mom would say about it?” And I said: “Honestly, I’m glad I don’t have to go home and tell her about it right now!” We got a good laugh about that. You’d have been giving us more unsolicited advice than ever, and no doubt we’d have butted heads on all of it. I know a lot of people probably frown on your level of involvement in my (and Tanner’s) life, but he and I loved you and appreciated you, and we all made it work because of that. We know that everything you did or said was always out of love, and it was never pushy, controlling, or selfish.

You’d be happy to know that he is doing very well in business, and you’d be so very proud of him. I know you always saw all of his potential and had so much respect for him, and I do wish you could see what he’s doing.

Speaking of being proud, you’d be so amazingly proud of Ginger, too. She grieves too, but she has stepped up so much for me and been there for me.

Momma… I hate this. I really do. I ain’t the same. I can’t believe I have to live the rest of my life without you. This all went by so fast. I think a lot about the last year we were together when you were sick, and I still cannot process it and believe we went through that. My memories from before you were sick have finally started coming back, too, so I’ve really been missing you, the you I had for all my life. Your absence is felt in everything.

You always told me that no matter how old I got I would always be your baby. You meant that from the perspective of how you would always mother me whether I liked it or not, but it is also true from the perspective that, even as adults, we will always want our mothers because we will always know we are someone’s child. I’m only 37 and you were right: I’m still your baby.

I prepared for my mom’s death for 10 months. We knew it was coming. Yet I realize now that I was never able to fully grasp that concept at the time.

So when the time came, I didn’t believe it. She began having symptoms that I knew were signs that the end was very near, but a part of me denied it. My head knew it the whole time. My heart said this isn’t real…

Those last several days were worse than I anticipated. I wrote most of the following words a couple months after she died and posted it to my Facebook page, and I’ve now added a few details:

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For several years now I practically never ask for very specific things in my prayers. I learned a long time ago that I don’t know what I’m doing but God does, and God likes to show me what I never could have understood myself and why my choices or my timing wouldn’t have worked. So, usually my prayers have a lot to do with God’s will being done and me just understanding how to follow along with that.

The last few days of my mom’s life she was very sick. For 3 days and nights she hardly slept or rested, and she wrestled with pain and sickness that her medications were not controlling. Each of those nights, a few hours after putting her to bed, I’d hear the little ding from the bell I had given her.
There was a baby monitor in her room - facing the wall for privacy - and I’d turn it on, then literally collapse into my bed from exhaustion, falling asleep almost immediately. Only a few hours later, the ding ding! My Pavlovian reaction would jar me awake, and I’d rush to her room.

Unbearable stomach pain, ongoing constipation, and nausea that caused dry heaves. This had been going on for days. She’d sit on the edge of her bed and rock back and forth, occasionally attempting to empty the contents of her stomach into the waste basket by her bed. But there was nothing in her stomach. She hadn’t been able to eat anything in a couple days. The hospice nurses had tried a few different medications - on top of the several she already took - but none seemed to relieve the symptoms.

It was agonizing to see her in that condition, and especially hard not being able to do anything to help. She was in misery. My brain knew this was different than other times she’d had nausea, or pain. Out loud I said, “I’m not sure what exactly is wrong.” That was denial in my peripheral. But inside I acknowledged her body is shutting down.

Either way, I prayed diligently that God would take her pain away from her, take the nausea and let her get some rest and comfort. Even if it might be the end, take away her pain. She doesn’t deserve this suffering. She can’t take it. I can’t take it.

But He didn’t.
It was complete silence that was deafening.

I thought it would be ok to ask for something so specific since I never do. I thought surely God could answer this one thing because I don’t ask for much.
So when He didn’t I found myself feeling disappointed and frustrated.
I accepted it, but I was sad.

Finally, my mom was so sick that she decided she wanted to go to the Hospice Compassionate Care Center for more intervention. I thought it was important to let her make that decision. The premise behind the Compassionate Care Center is to treat the patient’s symptoms with a higher level of medication intervention (IVs, etc.), get them comfortable again, and send them back home if possible. So, the goal was to come back home. But we both knew - without saying - that not everyone comes back home.

When she couldn’t stand the misery anymore, she asked me to take her there. This was at 4am on a Sunday morning. My husband woke to help me get her to the truck. She was very quiet, and I could tell she was practically delirious from distress. I was watching cautiously through the doorbell camera as he rolled her out in her wheelchair, while I gathered the bag I had packed for our indeterminable stay at the facility. I heard him tell her he loved her. He also knew what I knew but wasn’t saying.

My babies were fast asleep. I thought about how when they woke in the morning and went to nanny’s room, they’d be confused as to why she wasn’t there. That gave me a pain in my chest. And maybe they’d never see her again. The ache intensified.

The streets were dark, and I was driving fast without speeding. Please help her. I had to get her to someone who could help her, whatever that meant. “Blurry” by Puddle of Mudd played on the radio. I kept telling her we’d be there soon, and they’ll help her.

At the care center, a nurse was waiting. She showed us to the room. My mom was holding her belly, and moaning in pain. There were papers that had to be signed first, but I begged them to please hurry and ease her symptoms. The nurses were so kind and reassuring and worked hastily.

They’re going to help her. I really didn’t know what to expect; what they would do, for how long, why, or anything else. I really didn’t know anything. But during my conversation with the nurse - out of earshot from my mom - I heard the words, “terminal restlessness.” A gut punch. I almost threw up. I got dizzy, nauseous. My heart raced. You don’t understand, she rocks like that all the time. This is normal and that’s not what that means. She just needs you to help her.
I had to excuse myself to the restroom.

I returned to her bedside, and it wasn’t long before the medicine calmed her down and my mom began to rest. I usually stayed very strong for her but before she went to sleep, I finally broke down. I laid over on her bed and cried, and said, “Momma I am so sorry you’re in so much pain.” I just couldn’t hold it in any more. She put her hand on my head and rubbed it and in her slurred, barely discernable voice diminished by her disease, said, “My baby.”
She called me that my whole life.
And not long after that she was resting.

While there I continued to pray and honestly I probably let my disappointment show up in those prayers. My mom never wanted to suffer and she didn’t deserve to and after all she’d been through I couldn’t understand why it was happening this way. Why was she suffering even more.

And then immediately I heard, “Be still and know that I am God.” I mean I didn’t physically hear it, you know? But it was there in my head very loudly.

All day on that Sunday she rested peacefully. I wasn’t sure what to expect- whether she’d wake up at all, sleep for days... But I stayed by her side the entire time. I pulled a chair beside of her bed, and I laid over on the side of the bed to sleep so that if she woke up, I’d be right there, and she wouldn’t be scared or alone. Sometimes I’d put my hand on her so that if she was conscious, she would feel me there. I never even went over to lounge on the couch, or anywhere but the restroom. I only took a short walk around the campus once when my husband made a short visit and he sat by her side while I walked.

She was asleep the entire day. The nurses came in periodically to administer more of whatever they were giving her. I never saw a doctor, but it was Sunday so they were only on call. Finally, late that night, the nurse who’d checked us in was back on shift. I still didn’t know anything, and nobody had given me an update, a prognosis, or any expectations at all. Truthfully, I’d had it in my head that she would rest most of the day, then eventually wake up to some degree, and we’d figure out the rest from there. That’s why I hadn’t had my kids visit that day or updated any family members. So late in the evening, I asked the nurse, “Am I ever going to talk to her again? Is she going to wake up?”

“Well, honey, that’s really up to you.”

WHAT?!What do you mean it’s up to me? You all are in charge here. Nobody has told me what is going on. Nobody said she’ll never wake up, or anything else!

The look on my face told her I needed more clarification. The nurse explained that my mom had received the lowest of the doses they give, and she’s slept through all of it, meaning her body was weak and she needed rest. Some patients do not sleep through that dosage. For her to wake up, they’d have to stop giving the medication and see what happens.

If I want to talk to my mom ever again, I have to ask for them to stop medicating her and risk her being in an incredible amount of pain and suffering again. I don’t know what would happen if she began to wake up… Maybe she wouldn’t be in pain, but maybe she would suffer greatly. I thought I would talk to her at least one more time. This cannot possibly be all up to me. Why didn’t anyone explain this earlier?

Ultimately, after some reflection, I decided that they should not stop her medication to try to wake her. The thing is, my mom never wanted to suffer. She didn’t deserve to be in pain. Deep down despite my denial I knew her symptoms were from her body shutting down, and she couldn’t come back from that. And, on several occasions she had told me that she just wanted to go to sleep peacefully and not wake up. So here we were. And I couldn’t be selfish. I always wanted what was best for her.

Before allowing the nurses to administer any more medication, I called my sister in California to tell her what was happening. I had told her things hadn’t been going well over the last couple days - though that happened on occasion - and she was trying to decide the right time to get a flight, and I hadn’t known how to even help her make that decision. She obviously wanted to be with mom before she passed, but having to take into account care for her children, the price of flights with the timing of flights (what if she flew in for a few days to spend time with her, then everything was ok, but then as soon as she got back, mom died and she’d have to get yet another flight, etc.), was so complicated.

I put the phone on speaker so that she could talk to her and, just maybe, mom could hear. My sister, the artistic, musically inclined one, said, “I’ll sing her favorite song.” So I lay the phone near and in the dark and stillness she shakily sang “I’ll Fly Away” and it was beautiful. My mom had told us several times that she loved that song and wanted it played at her funeral. My mom knew where she was going after she left us.

I also called my husband to let my kids talk to nanny once more. I probably should have called a couple other people, but I just couldn’t think straight. It was foggy again. It was that whole out-of-body kind of experience. A movie I was watching about someone else.

I stayed right by the bed all night. If I wasn’t holding her hand, a couple of times she would begin to reach up, and I’d grab hold of her. That was the most she’d moved all day. I don’t know if she was looking for me, or something else.

By the next morning I could tell it wouldn’t be long. She looked less like herself by the hour, and her breathing was shallow. All I could do was sit there and watch her and wait.
It was a paradox. It felt cruel to sit and watch her life fading away, not knowing how long I’d be sitting there unable to do anything about it. It was agonizing, really. This could be for a few hours, or a few days. But at the same time, I wanted to be there with her in her last moments. I was honored to care for her until the very end.

A little after 10, my husband showed up. He promised our son he would call so he could speak to his nanny. They had a very special bond, as she’d lived with him and cared for him since he’d been born. He spoke to her for a minute, told her he missed her and loved her, and he was ok, then hung up.

A few minutes later, she left.

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Over the next few days I reflected on what had happened. I wanted to understand it. I wanted to wrap my head around why she’d suffered so much there at the end, and I knew I might not get that clarification.
But God allowed it.

Anyone really close to me, which I guess actually is very few people, knew how hard the last year had been- taking care of my mom and the kids simultaneously, watching her decline, carrying the burden with her every day and living with the anticipatory grief of losing the anchor of my life. It was so physically, mentally, emotionally, and even spiritually exhausting. The kind of thing that changes you as a person. There were so many times I had to pray for endurance, among other things.

So. It was Sunday that my mom got the rest and comfort she so desperately needed.
And so did I.
I stayed by her side and legitimately rested, at peace, more than I had in a year.
Just me and my mom.
Someone else watching my kids at home so I didn’t have to worry about them at all or be responsible for anything.
I didn’t do anything at all that day but sit by her side, and for the first time in a year, that was ok. Doing nothing was ok.
I didn’t know at that point that I wouldn’t talk to her again, so I wasn’t in any emotional distress at all.
We just rested. Peacefully.
We were still.

I understand.
The plan was never for my mom to leave home, and if she hadn’t been so sick she would have never gone to the compassionate care center. And if she hadn’t gone there, she nor I would have ever had the kind of rest and stillness we got on that Sunday.
The kind we’d both prayed for.
A day of rest. A blessing.
And if she had been at home with my kids there at the end, that would have been much more complicated and harder for everyone.

So when I look back, I see it and understand it, and I’m thankful for that.

I believe God was looking out for what we needed, as usual, not just what we wanted, even if it didn’t look like what we think it should. God’s ways are not our ways. God answers prayers, and sometimes God gives us the answers we seek. But sometimes it’s silence. I just want people who hear the silence to know that it still means something.

Romans 8:28: “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

Isaiah 55:8: “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.”

Romans 5:3-5: “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.”

Other than the diabetes she’d had for many years, and the smoking she’d done for even longer, we couldn’t see that anything would be wrong. She had regular check-ups, lab work, testing, etc. Of course her health wasn’t perfect, but she was still doing well for her age. Her fatigue, and any other symptoms that seemed to arise, had to be depression, my sister and I surmised.

Deep down my mom believed something was wrong with her. My sister and I pinned it on grief.

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“I just dropped your mom off. Is she ok? Jack thinks she may have had a stroke?” A text from my neighbor, Lavonna, in the spring of 2023. I was at church with my husband and the kids. Mom was leaving the house later than us, so she’d drive herself. I waited for her to fill the seat next to me.

“What?!” The text was confusing. Why was my neighbor texting me? Why was she texting me about my mom, who should be here any second? And why was she talking about a stroke? Maybe she sent the text to the wrong person.

I stepped out into the lobby to call my neighbor. I would’ve called my mom, but she never carried or even turned on her cell phone.

“Hi, I’m sorry. What’s going on? I’m confused. Did you talk to my mom?”

“Yes, she had locked herself out of the house, so she came to see if we were home and could drive her to the church.”

“And was something wrong with her? What was the mention of the stroke?”

“Oh, well Jack worked with stroke patients before he retired, and he said it seemed like maybe she’d had a stroke.”

My heart was racing. I was still confused. Now I wasn’t sure if she was being dropped off to me at church or at the hospital.
“Why did he think that? What was she doing?”

“Her speech was very slurred. I’m sorry, we didn’t know if something was wrong. We hadn’t talked to her in a while, and she just sounded a lot different.”

“Did she seem ok otherwise?”

“I think so. But it might be something you want to check out.”

“Ok, thank you. I appreciate it.” By that time, mom was walking through the lobby towards me.

“Are you ok?”

She grinned in embarrassment. “I locked my keys in the house as I was leaving! I had to walk down to the neighbor’s house to have them drop me off.”

“Oh ok. Is that all? You feel ok? Lavonna texted me and said it seemed like you weren’t feeling well.” For some reason I didn’t want to tell her exactly what had been said of her symptomatically. Maybe I didn’t want to worry her. Maybe I thought it was not plausible anyway. Surely she might sound flustered after being locked out of her house, having to bother the neighbors, and walking all the way over to their house.

She sounded totally normal to me at the moment. She had had some issues over the last couple of years with her speech, but that was because of her dental implants. They’d not totally fit comfortably, and she told the dentist so. “You’ll get used to it!” the dentist had said. It was just a matter of warming up to the new hardware in her mouth. She was told any issues should clear up promptly.

I didn’t know until much later the extent of the ordeal she’d been through with the dentist and orthodontist. They’d dragged her around about the fittings of the implants, got them wrong multiple times, people were fired, hired, and it was a very stressful experience. I just didn’t realize it at the time, the impact it was having on her. She’s a big girl, I thought; she doesn’t need me to follow her to all her appointments, especially dental appointments. But I didn’t think about the fact that my mom wasn’t an assertive person. She wasn’t the type to speak up or make waves. So later on when I understood what she’d been through, and some of the questionable aspects of the experience, I was ready to go after the whole office. I explained how I was going to burst into the office, demanding answers for services that had happened 2 years ago.

Protective, I was. Of my kids, of course, but also of my mother. The instinct to protect my mom was as strong as the mother cub instinct I had with my children. But, by the time I was offering to disrupt the day at the dentist’s office, we found other worries to fill our time.

So, when the neighbors suspected a stroke I thought, “they haven’t talked with her in a while, and they don’t realize her speech is slightly different now, that’s all.”

Every day after that I tried to pay attention to how my mom sounded when she talked. Mostly it sounded fine. But yes, every now and then it was more slurred. Her mouth gets tired with so many changes made inside, I concluded. Made sense.

A week or two later I decided to tell my mom what our neighbors had described the morning she had asked them for a ride.
“You know, when I went last weekend to have lunch with Barb and Amy, Amy had asked me the same thing about a stroke. And Barb agreed. I told her about my dental implants.”

“Really?!”
Did her speech really sound slurred enough for now 4 people to wonder if she’d had a stroke? How would I not have noticed something like that? “I think you sound totally normal right now.” And she did.

What was also peculiar, though, was that for about a year she’d been getting choked a lot on her food and drinks, especially water. We’d consulted a gastroenterologist who had done an endoscopy, sending a little camera down her throat to see what was going on. “This can be common as we age,” he’d said. “Nothing is wrong that I see. I did stretch the throat to provide more room. This should help.” And it did, for a while.

But she also had neck pain. It had started a year ago, this achiness in her neck. She’d been to physical therapy consistently for months, but it didn’t seem to help. It was at a point where she couldn’t hold up her head by late evening. Too tired.
A couple weeks before locking herself out of the house on that Sunday, she’d visited an orthopedist. After an X-Ray and MRI, it was determined that, yes, she had some wear and tear on her neck. Her muscles were weak. Some discs were thin. But it was normal wear and tear that comes with age, they said. So they gave her a steroid shot.
“Now, doesn’t that feel better?” the doctor had said 10 seconds after plunging the needle into the top of her shoulder. She paused. “Yeah, I guess.” Later she told me that was a lie; she hadn’t felt any different at all. The lack of assertiveness. My protective instincts fluttered.
“Why was he telling me how I felt instead of asking me? Because they just do it for the money,” she said to me. I couldn’t argue there, but I did push back, “Why not be honest, though, when he asked if you felt better?” “I don’t know,” she’s explained. “I guess I thought it didn’t matter anyway because nothing is helping.”

I wanted to go after the orthopedist office, too. How dare they start poking needles into an elderly lady’s neck without the consent of her daughter? Don’t they need my signature or something? And why did things seem to get worse right after the injection?

Better yet, how could I have let her go to all these appointments alone?

Neck pain, slurred speech, and then there’d been the fatigue. She’d been getting tired so easily for a year or more. Normally very involved with her grandkids under the same roof, she’d said she “just couldn’t” watch them longer than my short trips to the grocery store. She stayed in her room a lot more. She just never seemed to feel well.

I’d been a little frustrated about it. She was never the type of person to put herself first; she was always taking care of everyone else. She could definitely eat healthier and get a little more exercise. That would probably help. She wanted these grandkids to play with. Couldn’t she take care of her health for their sake?

“Is she just giving up on everything?” my sister and I wondered. How could we bring her out of her depressive fog and make her feel better?

Due to the suggestion of a stroke, we visited her heart doctor. She’d had stints put in her heart years ago and she always got a great report at her yearly check-ups. At this appointment in July of 2023, her doctor did an ultrasound of some important arteries.

“No signs of a stroke!” he said. It seemed like good news. But something didn’t feel right. If it wasn’t a stroke, then what was going on?

A month later she decided to consult her family doctor, Kim. We called her by her first name. Everyone did. She had taken good care of my dad when he first moved to my town with a lung cancer diagnosis and none of the other doctors had bothered to set him up with oncology. And she’d taken good care of my mom since. Kim was the type of practitioner who would call you from her personal phone number to check on you.

That evening when my mom got back from her visit, she came through the door and rushed through the house and onto our back porch. My eyes tracked her. Her haste was unusual, and she looked very upset. I followed her.

“Mom, what’s wrong?”

She was crying, and shaking. “What is it, mom?!” I couldn’t imagine what could possibly have shaken her up so badly. It had to have been something at the doctor’s office; she didn’t have a cell phone on her to have received bad news about anyone else.
Was it cancer? That didn’t make sense because, for one, she’d have to have testing done to confirm that, and I knew that hadn’t happened. But two, cancer has treatments, and she was far too upset.

She said she’d tell me later. I wasn’t sure what to do. I couldn’t possibly go on with business as usual, because something bad was happening.

“Mom.” I looked at her, seriously.

She had a receipt in her hand from a gas station purchase. There was a pen laying on the table and she picked it up. Why was she writing instead of talking?

What she couldn’t bring herself to speak: “Lou Gehrig’s,” she wrote.

Wait, the bad thing? The worst possible thing?!

“Kim told me to start reading about it,” she choked out.

“Mom! There is no way she could know that! You need to calm down a little. That is so incredibly rare and that is just a stretch. I don’t think…” She cut me off. She didn’t want to talk.

Deep down she knew.

I knew something was wrong, but there was no way it could be that.

This weighed on her for the next couple of months until she could get in to see a neurologist. We were somewhat able to ignore what was looming, but the air was still heavy. An speckle of hope was gripping on tightly, though.

In the mean time, a visit to the ENT made the situation even more suspicious. She had a tiny camera shoved into her nose and down her throat. While awake. It was an appalling type of procedure. I hated watching the misery she was put through in all these appointments. Another hoop to explore the slurring and the choking.
“Well, there is nothing obviously wrong. There are some fasciculations of the tongue, though.”
Fasciculations. A term I had never heard but would soon be very familiar with.
The doc sounded concerned. His face looked even worse.
But out of obvious caution, he said nothing more.

We went to neurology in mid-October. The neurologist seemed nice, and he looked over all the medical records we’d handed him.
“I can’t help you,” he said. My face twisted into confusion. His tone was sympathetic, and he continued: “I’m a neurosurgeon. I’m not sure why you were scheduled with me. I don’t do this part.”

That was terrible news. It takes months to get an appointment with any neurologist. What were we going to do now. “Let me make a phone call, he said.”

He came back a few minutes later.
“I got you in to see a brilliant colleague of mine, Dr. Schneider. He is the neurologist you want to see. He will see you in one hour.”

One hour?! Today?! But it usually takes several months.

We rushed to Dr. Schneider’s office. He was incredibly intelligent, accommodating, and kind. He, too, was able to get appointments and testing amazingly fast for my mom. As many times as I’m sure he’s had to deliver the news to patients that they have ALS, he treated us as sympathetically as if we were the only people in the world to have heard this news. He and his office staff were outstanding.

This was the beginning of a lot of sympathy, compassion, and favor we’d receive over the next year for which I will be forever thankful.

In this short story I wrote about after the confirmation appointment: The Last October.

50 years together. What an amazing milestone.
But as I told, my dad died on the 16th of July that year. Only ten days before the anniversary.

That was hard on my mom. After barreling through his sickness with such success, they both thought they’d happily celebrate that date together. My dad had never been a romantic type, and as many of their close family and friends know, my dad was not the best husband in his earliest years with my mom. However, when they had kids, things began to change. And by the time my sister and I had grown and gone to college, and my parents hit their retirement years, my mom and dad had gotten closer than ever, and he was sweeter to her than he’d ever been. My mom who, early on, had rarely ever received flowers, chocolate, jewelry, or even cards, was now getting surprised with such things for all the Valentine’s Days, birthdays, and anniversaries.

A few weeks before the 50th anniversary, my dad was sitting where you could always find him: the one and only chair he sat in at the table. I was passing by and he asked me to take a seat.
“Mine and mom’s anniversary is coming up. I want you to help me get something for your mom for our anniversary.” He hardly left the house anymore, but especially not alone.
“Ok,” I said. He said he didn’t know what he wanted to get, but he just wanted my help with it.

Here’s where I get to mention that with both of my parents, I did not always do a “good job” like everyone always says. People say I took such good care of both of them, and I did for the most part, but I wasn’t always selfless.

Because he didn’t tell me exactly when he wanted me to get something, or what he wanted me to get, I soon got busy after this conversation and forgot about it. He hadn’t mentioned it was a milestone year (or maybe he did), but at that time, when I thought all was well, I always thought there was more time.
I guess I figured I could revisit the conversation later, and I could go out a few days ahead of time to help him get something.

This is one of my biggest regrets.
My mom could have had one last gift from my dad for that anniversary he barely didn’t make it to, but because of me she did not.

When my mom was young and in school, she rode the bus home and every day she would sit in the same back seats with her friends.

One day when she got on the bus, there was a boy sitting in her seat, the one she always sat in.
Every day after that, she said, that same boy would be in that seat again.

That’s where it all began.
My mom liked my dad because she thought he looked like Elvis, and he really did.

My mom was a beautiful, inside and out.

“Waitin’ On A Woman” by Brad Paisley, a song I’ve heard dozens of times, strikes me differently now. That song reminds me of my mom and dad so much. The way the old man talks to the young guy in that song reminds me of my dad. It’s funny because it opens with: “Sitting on a bench at West Town Mall…” I can’t help but think that is the West Town Mall in Knoxville, Tennessee that my dad used to take my mom, sister, and I to for shopping. He would let us shop all day long, but he wasn’t interested, so he would wait for us in the car, blazing heat or freezing snow, literally for hours, and never complained.

But after my dad died, that part “…I’ve read somewhere statistics show the man’s always the first to go and that makes sense ‘cause I know she won’t be ready. So when it finally comes my time and I get to the other side I’ll find myself a bench if they’ve got any…” that sounds just like my dad. He was always waiting on her, and he’d definitely joke like that.

I remember a month or two after his passing, my mom, missing him so much, told me that if he showed up as a ghost in her room she wouldn’t even be scared. She’d just be glad to see him. She truly adored him their whole life together. And a couple years before she died, she had a dream that she spotted him in a crowd of people and he had been waiting for her.

These words here are scattered; there’s so much to say about my parents and I just don’t have all the words right now. Hopefully all the other stories I tell begin to paint the picture. Also, my sister actually had our mom write some stories about her life before she died, and then my sister compiled them into a book that can be purchased: Across The Mountain: Stories From My Life
There are a lot of great stories in there and I’m so glad she did that.

The way they’re missed by my sister and I, and their other family members and friends, is a testament to how great they were. A few days ago my sister and I were talking about them. At times I’ve wondered if I’m a little dramatic in the way that I still miss them every single day. But my sister said it is every day for her, too. And not only that, but it occurs at multiple times every day. Yes, exactly! I said. A gaping hole rising and setting with the sun, a little cloud following us and peeking around the corner throughout the day.
“This would be a good time to have them,” I said.
The thought is overwhelming sometimes.

Different waves bring different emotions. Some waves are more like “grateful to have had them,” but today is the “unfair” wave. I can’t help but think about the love my kids are missing out on. My mom and dad just had this deep, unspoken love (though they did speak it, too) that made you feel warm, calm, secure, confident, stable, and this appreciation for and dedication to family that I inherited and still wish more than anything to share with them.
We weren’t done. We were just beginning, in some respects.

I’ll be honest, I know my dad probably wasn’t literally waiting for my mom on a bench in Heaven. Scripture is a little vague on how it all works on the other side. However, we are promised joy, and only happy tears. I wish I knew more. But I read something that said, “The birth, death, and resurrection of Jesus means that one day everything sad will come untrue.”

One day, no more death, mourning, crying, or pain (Revelation 21:4). That’s all I know.

I thought I might find it at a luxury resort called the Omni Homestead in Hot Springs, Virginia. I’d seen it on a “reel” on Instagram. This place that looked like harmony and serenity manifested.

That must be where I’ll find it. The calm I sought. The oxygen I needed.

I convinced my husband to take us - me, him, and the kids. We hadn’t traveled anywhere since mom had been diagnosed. We couldn’t. But mom’s sister flew from Florida once a month to stay with us for a week to help me take care of her. That help was a bit of fresh air. I thirsted for more, though.

She was coming again in July so I thought we could take a 2-night trip to get away.
A trip to a resort was not at all in the budget, but peace is priceless, isn’t it? Let’s make it work.

My mom and aunt encouraged it. They knew the weight on me, and wanted me to have an opportunity to enjoy myself and my family. So we booked it.

The drive to Hot Springs, Virginia was long, windy, and bland. As we neared the resort, I played “Hey Driver” by Zach Bryan again. I’d only heard it 632 times in the last 2 months. It felt like an anthem.

“Take me down a road that’s a little bit windy, to a place they still put sugar in their iced tea…”

Yes, please. Metaphorical.

“Hey driver, pull on over. I’m in a fight with God…”

Sounds familiar.

“Hey driver, I’ve been feeling like there’s no point at all. The Klonopin ain’t kicked in and I missed my sister’s call. Hey driver, I’m so tired of the weight of this old world. Just drive until the tires melt. We’ll come back when it’s healed…”

There it was.

We arrived at the resort and checked in.
“Would you like a complimentary glass of champagne?” they asked.
Yes. This was off to a good start.
Two glasses of champagne were presented on the counter. One for me, one for my husband.
I took both glasses.

We got settled into our room, then began exploring the property. It was a grand expanse of history.
I couldn’t believe we had access to all of this. It was gorgeous. Just like the internet said it would be.

We took the kids to the pool. There were only a few other people there. Not crowded, which is one of my love languages. Later we ate delicious food.

Then night fell.

There was always something about nighttime that made me uneasy years ago when I had struggles with anxiety. Back when I’d called my mom at 3 a.m. explaining that my stomach hurt, my chest hurt, I was shaking, something’s wrong. She’d always talk me through it.

The feeling was unexplainable. But something off, something didn’t feel right. I felt something creeping in. I hadn’t felt it that way in a long time.
The deep nausea churned. I told my husband I didn’t feel well.

“Do you think it was the food?”

No. It wasn’t the food.

I broke, and cried. “I’m homesick. I don’t know how to be away from her.”
Sure, I meant even for just that one night. My focus and priority had been serving her needs for 10 months straight. She trusted me. It didn’t feel right not to be with her.
But I also meant forever.
She’d served me for 36 years. I trusted her. It didn’t feel right for her not to be with me.
“Do you want to go back home?”
I did. I felt panicked. But I’m logical. That wasn’t the answer. “I’ll be ok.”

Homesick… I’d felt it before. When I was a kid, I tried to go away to summer camp twice. Both times I missed my family and my home so much - this pitted feeling in my stomach - that I called my parents to make the 2.5 hour drive in the middle of the night to come get me. They never hesitated to jump in the car immediately, both times.

This night at this beautiful resort, something wasn’t right. I felt weak. I felt my insides grumble. My limbs shaky. I felt the urge to call my parents to come get me.

It was almost time. I knew it. I just knew it was almost time. She was about to be gone. Despite my best efforts. Despite my prayerful protests.

When I got back to the room, I messaged her on Facebook. She didn’t talk on the phone anymore because her voice was barely intelligible. I could understand her - I was about the only one who could - and she’d have talked to me on the phone, but I knew she preferred to type now.

“How’d your day go?”

“Well for the most part, it has been a good day. You will like this, for breakfast, I had scrambled egg, two pieces bacon and toast with butter and jelly. It was good. I had a new nurse come from hospice today. I was not impressed. She was not real friendly, hope that she is not a regular. So what did you all do? You got new pictures? Love you all and miss you.”

It really was so good to hear that she had had a good day and that she was eating well. I’d been worried about her all day. She usually did not eat well at all. And many days were not good days.
An ounce lifted off my chest. A short sigh of relief.
I noted, though, that part of the relief came from the fact that I could message her and check in with her. I got my fix. I could talk to her. It calmed me.

Again, though, this nagging and urging thought that before long, I wouldn’t be able to do that. Something I already knew all along, but it was so prominent. I worried, even, that she could die while I was away on the trip. That would be one of my worst fears. I’d been there for everything, always. I had to be by her side until the last moment.
Still uneasy. Still homesick.

The next day we decided to visit the “healing” warm natural spring that was one of the feature attractions in this little hidden community. It was rumored to have restorative properties. An ancient tale.

It was rainy and cold that day. Ironically, I had agonized over choosing good, sunny weather days for this trip. But here it was overcast and dark with a chilled rain. Of course that was my luck.

It was a short bus ride to the natural spring. The spring was a pool enclosed in a metal building that from the outside didn’t seem impressive. We waited several minutes out in the misty air much too chilly for July.

Finally, we entered, and I eyed the clear, natural water. It did look nice, earthy, inviting. I stepped in. My body immediately reacted: my heart rate slowed, my muscles relaxed. It was like a warm bath, the most perfect temperature. Exhale. I sunk into the water to let it engulf me.
I noticed a large hole in the center of the roof, intentionally there to let the natural light in. Through that hole, it began to rain very steadily into the warm water.

I floated around, trying to see if I was still capable of deep breaths. I drifted into the center of the pool and let the chilly rain fall on me. I paused there. The contrast of the warm water and the cold rain… Brilliant, and deliberate.
Truthfully, for a moment I was somewhere else.

After, we got lunch, and by the early afternoon the sun made its way from behind the clouds. That sun I had thought I wanted earlier, but was glad it didn’t show.

We made our way to the lazy river and water slide and spent the rest of the afternoon swimming in the cheery, punctual sun.

The next day I was eager to leave. The trip had been nice but I was being pulled back home. I was relieved, actually, to be heading back to where I was running from.
I put on the music.

Another Zach Bryan anthem for me: “Burn, Burn, Burn.”

“…I wanna be a child climbing trees somewhere breathing in the fresh outside air, before I knew this life was unkind… I know I’m bound to die one day so when I reach those golden gates I pray to say I did the best I can. Sit with my mother and the dearly departed, send a prayer down to the broken-hearted. Let ‘em know it all turns out just fine…”

My mom died two weeks later.

She was my definition of “home.” There comes a point in life when you can’t heal homesickness. You can tend to it, patch it up. But it’s a scar. A permanent, painful scar of a time and place that no longer exists.

But a final truth:

“Never to suffer would never to have been blessed.” - Edgar Allen Poe

“How are you doing?” they’d ask me.
Often, I would spit out a platitude like, “Hanging in there.”
It wasn’t because I was afraid to tell them how I really felt. I mean, truthfully, I was being cautious of opening the dam. But it was definitely because I could not find words for it.

Now after some time and reflection, I can tell you exactly what being an ALS caregiver for someone you love is like: Drowning.

I know drowning is a metaphor for a lot of tough things, so I hate to be cliche, but I can unequivocally say that it is a very literal depiction for caregiving; the perfect one, actually, for the caregiver and the person who has ALS (but more on ALS later).

I remember the frequent physical sensation of feeling as though I could not get deep enough breaths to be sufficient. Gulping and straining for air, while an invisible weight embraced my body, squeezing steadily. Literally I would gasp or sigh frequently. A tension in my body at all times screaming for release.

The waves:

My mom is dying.
They told us she is dying and there is nothing we can do.

Because every single moment of every day, someone I love deeply is suffering. Someone I thought would be here. Someone who deserves good things. Will suffer.
There is no escape. She was never not suffering.

And it was my responsibility. It was up to me to keep alive a person who can’t be kept alive. It was up to me and only me to help shoulder her every emotion of every day. And mine. (And my kids’.)

Scared, mad, sad, frustrated, defeated, contemplative, worried, confused, sick, exhausted, weak. I’m the only one to help carry those. Hers and mine. If not me, she carries it alone.

Seeing the cruel symptoms manifest every single day. Startling things. Things etched into my mind that stung so painfully.

No matter what I did, who I talked to, where I went, or how much rest I had (which wasn’t much), the suffering and the dying were there, whispering in my ear.

Your mom is dying. She is suffering. She must be so scared. How are you going to live without her. Your mom will be gone. You won’t see her anymore. She is sad. She is depressed. She is suffering right now. She’s sick. She isn’t eating. Help her. Are you doing enough? Do something. There is nothing you can do about it. Make this ok. It’s up to you.

Always.

Physically feeling like I couldn’t catch my breath. For 10 months. Being on the verge of an absolute and total breakdown at every moment of every day was so heavy. I’d talk normally, or try to, but talking about the weather or dinner plans or a new movie was somehow like a flooding dam threatening to break. It was the hardest thing in the world not to absolutely crumble in the middle of the grocery store, or at a “I like your shirt!” or a song playing in the background, or during a business phone call, or playing with my kids.

Holding in that kind of tension, resisting the breakdowns, desperately clinging to the seams that were absolutely bursting…
I’m learning built up a depth of stress I’m only beginning to process.
Effects of cortisol that are now manifesting in my body a year later because it is learning to breathe all over again.

I know, I know. Maybe I shouldn’t have tried to be so strong. Maybe I should have opened the gates at calculated intervals and let the tension go.
But I had to be strong. For her. Because she couldn’t be. I will do it. I want to.

“You’re doing a great job. You’re handling it so well,” they’d say.

I remember thinking I would do anything to feel even a moment of peace. I dreamed of peaceful moments. I dreamed of sitting out on a patio somewhere in nature sipping a glass of wine in the golden sun and feeling like everything was ok again. But it was a false construct either way. Because to take away the physical and mental exhaustion was to not have her here anymore. And to not have her here anymore also wasn’t a solution.

But peace. I’d do anything for a peace that didn’t exist, would never exist. I knew I’d find a new peace someday, maybe, but I wanted the old peace. A new peace would be inadequate, incomplete.

A few breaks in the waves: my aunt coming once a month to help. One friend bringing food and gifts and offering helping hands. A few close family members or friends of my mom’s visiting her. My husband willing to do anything at a moment’s notice to ease the burdens.

It was much lonelier than I expected, though. The isolation was surprising, unsettling.
Grief does not know how to ask for help, you know.

I remember feeling like we’d been here in this situation, this era, for years. It feels like it’s been 5 years like this, I’d say. I’m so tired. So tired.
But I’d add: I know that when all is said and done, it will feel like it went so fast, like I blinked and it was over, and I’ll want it back. I will want it back. Which turned out to be true.

My time was running out with her. How do you reconcile the anticipatory grief with making the most of your time? What do you do? What do you say? Is it possible to ensure you will have no regrets?

Your mom will die. Soon. Not sure when, or what will happen. But she is definitely about to die. This is it. Good luck, though.

What’s funny is, when the time came, when my brain recognized that the signs meant it was the end, I denied it.
“No way, surely she still has more time,” something inside of me protested.
I did not accept that my mother was going to die.

Caregiving is having your mom in hospice, being told she has the most incurable of all diseases, trying so hard to make the most of every moment of every day, watching her symptoms completely overtake her, wishing away her suffering, not knowing what prayers to pray, being defeated by the weight and the stress,
and still my heart believing they could save her.

As an over-sharer, you’d think I’d have said something about this already. But I do know some things are better left kept. At least for a while. But, since I’m dumping everything else, why leave out my dad?

People can look at me and think I say too much, tell too much. But these same people will also read memoirs or watch movies that somebody wrote about their life experiences, right?

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As noted here, my dad was diagnosed with lung cancer only 3 months after his first grandbabies were born. Also as mentioned, my parents had moved to my town to be near the grandbaby, and due to the illness, all of us moved in together.

The old split-level house, which was practically the only reasonable one available on the market, was too small and inconvenient for two grandparents, two adults, and a toddler (I’d sold my home, as it’s steep stairs definitely wouldn’t accommodate my aging parents.) But I recall the year that we lived in that cramped, inadequate house as one of my favorite eras of my life. Yes, there were doctor’s appointments, medications, illness, worry, and exhaustion, but that is also where my parents most got to enjoy being grandparents.

My dad was doing treatments for his lung cancer, but he did surprisingly well with it. He had some side effects, and they took a toll sometimes, but he still worked in the garage as if things were normal, played Rook with us (always my partner), and he even raised a large, luscious garden that summer, as he’d always done. And every single day was spent playing with and loving on the long-anticipated grandchild (my sister and the twins came to visit from California a couple times while we were in that house, too).

That next winter we’d finally found a bigger house to move into to better fit an extended family unit. In the spring of 2019, we were finally settled into the new house. The great news was that my dad’s lung cancer had responded well to the treatments: the tumor was not growing at all, everything was stable, and he didn’t need any treatments for the foreseeable future. He didn’t even have another doctor’s appointment scheduled again until late summer. If the cancer wouldn’t go away, this was the next best news, and we were so thankful for it.

One week before July 16th, my mom and dad closed on that first house we’d all lived in together. That day my dad, who rarely ventured out of the house anymore, had gotten dressed in nice clothes and shaved his five o’clock shadow. He put on cologne like he always did on Sundays for church when I was a kid. My sister and I would say, “You smell good, daddy!” and he’d reply: “I am good!” (My sister reminded me of this later.) He had a silly sense of humor - he’d make up goofy nicknames for mine and my sisters’ boyfriends or draw ridiculous looking chickens on our papers - that only the closest of us got to see.
That day he looked so handsome, healthy even. Moreso than I’d seen in a long while. So I wanted to take a picture of him and my son. But my son was at daycare that day. I’d thought of asking him for a photo with my mom, or even me, but decided not to bother him with it.

Still to this day, I so wish I’d gotten the photo.

Take the photo.

July 16th was so normal. My son was in daycare again (he went on occasion through the summer just to hold his fall spot), and I spent the day outside finishing up some landscaping projects. By late afternoon, I went to pick up my son. When we got home, my dad had a gift waiting for his grandson: a big, yellow toy dump truck. My toddler’s birthday was a week away, but my dad had decided to give him this toy early. My son loved it and gave his papaw a big hug.

Later that night, it was time for my husband to go to work - a police officer at that time - and it was time to put my toddler to bed. My dad sat at the table in the seat he always sat in (he picked out a certain seat in every house we’d ever lived in and only sat there), and he told my husband to “be careful” as he went out the door. He said goodnight to my son as I took him to his room for the night. My mom was in the kitchen loading the dishwasher.

Within 10 or 15 minutes, my baby had just dozed off. I pulled my phone out and saw that at that moment I had just received a message from my dad’s sister: “I tried calling your dad,” it said, “but the phone isn’t working again.” We had a land line for my parents, and it went out from time to time. It was 9:18pm.

And I heard it. I’ll never forget.

“Holly!”

My mom’s voice. But the tone wasn’t worry. It wasn’t even panic.

It was complete anguish.
I’d never heard anything like that before.

I jumped out of bed and rushed into their bedroom. Where were they? And what was happening?

As I rounded the corner, I saw into the bathroom that my dad was in a chair, slumped over the sink. I froze for a moment, trying to make sense of what I was seeing. Did he fall? Did he pass out? How? Why?
As I got closer, I saw that there was blood in the sink, and blood coming from his nose and mouth. A lot of blood.
WHY. WHAT HAPPENED.

“Call 911!” My mom snapped me to attention.
But the phone isn’t working!
Oh wait, I have a cell phone.

I dialed 911.
“My dad is passed out and he’s bleeding from his nose and mouth. Please hurry.”

But you know what? I knew. I knew he wasn’t passed out.
But still, maybe…

“Is he breathing?”
“No.” I actually hadn’t even checked. But I just knew.

I asked if they could also radio my husband. They asked his badge number. I got it wrong. I couldn’t think. Nothing was making sense. Hurry. Somebody help.

8 minutes. It took 8 minutes.

My mom and I stayed there holding him for those 8 minutes.

“No, no, no, no.” She cried. “Not yet. Not like this.” I can never forget it.

WHAT DO I DO?!
THIS CAN’T BE REAL.

Later she recounted to me that my dad had gone into the bathroom to get ready for bed. She’d heard him yell for her, and it sounded different, so she put down the dishes and went to him. He was brushing his teeth when he started spitting up blood. That wasn’t totally out of the ordinary for a lung cancer patient, but it kept coming. Which is when he’d yelled for my mom. He asked her to pull the chair to him, as he probably started feeling weak, which is when he began bleeding profusely from his nose and his mouth. Which is when I heard the scream. Then it was only several seconds before he lost consciousness.
There was so much blood, she said. It’s the worst thing I have ever seen. I will never forget it.

My mom had waited on my dad hand and foot their whole lives. She did everything for him; that was her nature. And in this moment, she said, he looked at her with this pleading look on his face, as though she could help him.
But she couldn’t.
And I believe my mom carried that weight with her the rest of her life.

I heard the sirens approaching, so I ran outside. My husband’s lights and sirens were first, and behind him the ambulance. I screamed for him to help and he ran inside. I waited for the paramedics to show them the way. They were in less of a hurry, honestly.

My husband brought my mom out of the room and directed her to my side.
“You don’t want to be in there for this. CPR is not gentle.”

I held my mom in the kitchen, and one of my husband’s co-workers arrived to help. A couple minutes passed as I held my mom in my arms, and I didn’t know what to say or do. It was my dad, but I had to protect my mother, too.

As they rolled out the stretcher we looked away. “I don’t want to see them take him,” she said.

They loaded him up the in the ambulance and my husband took my mom to put her up front in his police car to follow.

We knew, you know? We knew he was gone. But nobody had said it yet and you just hope that it was a dream, your brain playing tricks, something…

I watched from the door as the other police officer put his lights and siren on to lead the way, the ambulance activated its lights, too, and they rushed to the hospital.
I knew they were doing that just for my mom’s sake, just a way of conveying to her they’re doing all they can. Compassion. I’ll never forget that.

My son was still fast asleep.

I called my neighbor to come to my house so I wouldn’t have to wake my son, who would be only 2 in just a week.

When I got to the hospital, several officers from my husband’s shift lined the hallway. They were there for us. I’ll never forget that.

My mom sat with my dad’s body and I took a seat beside her.

This was my first experience with death outside of a funeral, and was the first experience with someone I was very close with. It didn’t seem real. My brain hadn’t caught up yet. My heart especially.

Later I learned that the sergeant from my husband’s shift went to our house to clean up all the blood so we wouldn’t have to. Another thing I’ll never forget.

The thing that stung the most, I think, was that we thought things were ok. I remember my mom had just gone out and bought him new clothes, stocked up on all his favorite foods… He was supposed to be ok for a while. It felt like a trick.

We later concluded, by my own research and by speaking with his oncologist, that the likely scenario was that his tumor had invaded an artery and caused it to suddenly rupture. I’d never even heard of this or knew it was a possibility.

There were so many people that day and in the following days who did so many kind things for us that impacted me forever.

You don’t forget the trauma, but you don’t forget the compassion, either.
That’s what makes it bearable.

A couple weeks later when I was going over that night again in my mind - what I could have done to change the outcome, even though I knew the answer was “nothing” - I realized a couple things. First, my mom and dad didn’t use cell phones, and the landline phone wasn’t working during the emergency (eerie, by the way, that my dad’s sister was trying to contact him right at that moment). If my mom and dad had been living alone without me there, my mom would have had no way to call for help. I can’t imagine her in that situation not knowing what to do, having to leave my dad’s side to go to a neighbor’s house for help.
Secondly, my mom, my son, and I had a trip to California planned. We were leaving a week and a half later to see my sister and her family. What if this had happened when we were gone and he was totally alone? The thought made me sick.

Instead, there was really no better way than in his family’s arms, and quickly. I worried for a time that maybe he was scared. I couldn’t bear thinking he was scared in that moment. But it happened so fast that maybe he didn’t even know or have time to be scared. And, he didn’t have to have a long period of suffering from getting worse from the cancer.

Ultimately, I have to find ways to be thankful. The silver linings. That’s how I cope.

I’ve held on to that experience for a long time.

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As it turns out, I held both of my parents as they died. It’s heavy. It’s very heavy, but I wouldn’t have it any other way.

I’ve got another important date coming up, so more on my parents soon.

My mom died last August.

One thing I learned from when my dad passed was that, at least for me, I go into a survival state of shock when I lose someone close to me. I have moments of emotion up through the funeral, but I’m mostly an autopiloted robot for a while. The deep grief, the losing control, the devastating realizations, all come later.

I thought it might be different with my mom since we were so close and we’d been through so much, but it mostly happened the same way. I was a zombie through the entire month of August. Finally in September it all came creeping in, little by little.

By October I was a high-functioning depressive. I felt nothing, and everything, all at the same time. There’s nothing like losing your family to make you feel like life is very trivial and, admittedly, a little pointless. If we’re all going to be reunited and unwaveringly happy in Heaven, why not just get this part over with? What are we waiting for?

I didn’t know how to navigate normal life - a new life, really - after spending the year at my dying mother’s beck and call (now what am I supposed to do?) and all the years before that with her devoted help and adoration.

When I announced to friends and acquaintances on Facebook that she’d died, I said: “This has truly been the hardest year of my life and these last few days were awful. This is worse than I even imagined. But, she is now at peace and resting with Jesus, and I am glad for that and thankful for all the time we had with her. Her love was truly unconditional, selfless, and unwavering. There is nothing like my mother’s love and I dread being without it.”

So that fall I was starting to feel quite desperate. By November I began praying:
I want to see my mom. In some capacity. In ANY capacity. Please let me see her somewhere. I just need to see her. Maybe in an old photo someone sends me that I’ve never seen before. Or maybe a stranger at the grocery store looks and sounds like her. I don’t care where or how. I miss her so much. Please, please let me see her.

I didn’t tell anyone about this prayer. It was between me and Him.
I’m not one to ask many specific prayers for myself, and I’m certainly not one to “test” God. I didn’t ask just to see if He’d deliver. Not at all. I just truly, desperately needed to see my mom so badly. It was a genuine and fair request.

Weeks went by, but I wasn’t impatient. I prayed my prayer occasionally, and I really knew that I would see her somewhere, somehow…

My birthday is late in December. What’s interesting is that the story of my birth is a whole story. I’ll tell it sometime soon. But it’s a story that displays my bond with my mom.

This past birthday was my first without both of my parents who never failed to make me feel special on that day (and any other day, if I’m being honest). I was sad. I had a husband and kids to help me celebrate, and they’d given me some wonderful gifts a few days early (my husband gets excited and likes to give them to me early), but nothing can quell grief when it makes demands until it gets what it wants. “I have one more gift for you, and I don’t know why it hasn’t arrived yet; I have no idea when it will be here. I’m sorry,” my husband had said. I was grateful, but I wasn’t worried about gifts.

Sometimes in my life, late December has proven to be characteristic of winter, but many times the weather has been more reflective of fall or spring. It’s a bummer when it doesn’t feel like winter on my birthday. If its winter, I want it to be winter. I love snow. And so did my mom. She absolutely loved to see a beautiful snow.

I can’t remember the last time it snowed on my actual birthday. I’m sure it has in 30 some years, but I can’t remember it because it is so infrequent. But on this lonesome birthday, as I sat and thought about missing the people who brought me into the world, it began to snow. The most beautiful snow. Big, shapely flakes. And it even started accumulating as a blanket on the ground.
My mom loved the snow! I’m so glad it is snowing on my birthday.
Maybe my mom asked God to send me some, I thought, jokingly.
It warmed my heart a little.

A couple hours passed, and I heard the doorbell. When I got to the door a package awaited outside as a delivery truck pulled away.

It was addressed to my husband. Curiosity led me to opening the package immediately. As I did, I gasped and began to cry.

There was my mom, in a constructed photo of her and my dad, with my son and daughter (my dad had never even gotten to meet my daughter).

My husband had taken the time to choose the best photos of everyone and had them put together perfectly. It was perfect.

It was a snapshot of how things should be at that exact moment in time, even though they can’t be. A glimpse into life being right.

It took me a day or two to connect it, but I saw her. In the unexpected photo, while it was snowing, on my birthday. Maybe it’s a coincidence, but probably not.

Life keeps moving on, changing in ways my mom wouldn’t recognize, threatening to leave the trauma behind. But I’m still keeping a strained grip on it, I guess.
What I keep feeling I just can’t find a way to convey it. Because there’s still so much. And its looming and creeping. While life keeps moving.
There are some important dates coming up and I’m wondering if my words will return.

We recently took an unplanned trip to Florida. We don’t like to travel during the summer because everyone does that, and I don’t like being around everyone. And it’s so hot.

But I’d been needing to get away for a long time. Since the last trip to Florida, two weeks before the diagnosis.

My mom used to go there to visit her sister a couple times a year. They were close; my mom even had her own bedroom there. So my mom was there most times that I went. And that last time we’d gone, right before her diagnosis, she had flown down ahead of us, and she was there on the porch waiting as her baby (me) and her grandbabies arrived. That was the best vacation my family ever had; we made the most of it because I knew in a matter of weeks everything was about to change. I knew what was coming. But it wasn’t here yet.

So my brain identifies that trip as the last time things were normal.

We obviously didn’t travel while mom was sick. After the funeral last August I’d wanted to go to Florida in the fall, but it didn’t work out. Then the spring didn’t prove opportunistic, either. My aunt reminds me of my mom in a lot of ways; I guess I was trying to find my mom somewhere. Or maybe that normalcy again.

Then divinity gave us the opportunity, suddenly, to make a trip to Florida just a couple weeks ago. It was unplanned, but we’ve realized that that’s how we operate best: winging it, entering the opening doors, going with the flow, improvising, ultimately- “giving Jesus the wheel.”

I thought of my mom the whole way there. She wasn’t at home, and she wasn’t going to be in Florida, either. But the people there loved her dearly, too, and that counts for something.

During our stay, my husband, kids, and I would go out on excursions to wherever the road took us, and we’d be gone all day until late at night. On two occasions, after hours of being gone, I got this panicked feeling: “Oh no! I forgot to check in! Nobody knows where we are and they’re going to be so worried.”

Then after picking up my phone, I’d realize there was nobody worried about us, nobody waiting for my call, nobody wondering where we were.

Maybe my mom was a worrier, maybe my mom was a helicopter mom, maybe she was too involved (by some accounts, not mine), maybe it isn’t normal for grown adults to check in with a parent so often, but man, she loved us so much and she was always there. I’d much rather check in with a loving, worried mom, than have nobody wondering about us at all.
(In my aunt’s defense, she’d worry about us if we didn’t return in a reasonable time. But she is much more relaxed and rational, even, than my mom was.)

That’s been one of the hardest things to come to terms with over the last year:
Who’s looking out for me?
(I have answers for that question, but none are the correct answer.)

Other than that, we really had a great trip. I can gratefully say that it did lend to some healing. Especially as we are nearing a year.

Like I said, there are some important dates coming up.
The cathartic writing resumes.

The last couple weeks I’ve been very annoyed at my parents for not being here. They wanted these grandkids, but now when I need some help with them, they’re not here like they said they’d be. I need help with a lot of things. I’m just a kid. I’ve always been somebody’s kid. They really both just had to go? So quickly? My parents left me here alone but I have no business being here alone. Not yet.

I read a book last year that had an unexpected and totally unfair, sad ending. I’d been very invested in and enjoyed the book up until that point. But the ending was so unexpected and distressing that ultimately I decided I didn’t even like the book. I was angry. The author did not have to end the book that way. Totally unnecessary.

You ever read a book where the ending really shakes you up and you think, “Wow, I wish the author had written that differently?”
<><>
As the story goes, my mom and dad always wanted grandchildren so badly. They’d mentioned their hopes and dreams throughout mine and my sisters’ 20s, but both our lives had skidded through a few unexpected curves. My sister was over 30 and I was rapidly approaching 30 and it didn’t look like it would be a dream fulfilled.

My mom loved on her friends’ grandchildren and got to be a step-in grandparent for other family members’ babies. She loved kids. But in November of 2016, one random day my mom stopped in her tracks, threw her hands up in the air and directly confronted God: “Why wasn’t it meant for me to have grandchildren?!”
Nobody knew she did that at that time but she and God.

A couple weeks later I called my mom to tell her the news: I was pregnant! Unplanned, unintentional.
By the next day, Ginger called her too: she was also pregnant! And we’d soon find out she was having twins!

Wow! My mom eventually told us about her little chat with God, and loved to tell that story about how quickly He answered her prayers.

My parents got 3 grandchildren all at once in July 2017.

I will never forget the first day my parents held my son. They’d waited so, so long to be grandparents. My mom and dad drove 2 hours up to the hospital to meet their first grandchild. He was born after 8pm. The first two hours the baby was doing “Kangaroo care” (skin to skin contact with his mom and dad) so they only got to look at their grandbaby, and didn’t even get to hold him. It was getting late, so my parents made the 2 hour drive back home with only a glimpse of the long-anticipated baby.

2 hours was a long drive, and the hospital in the city was no easy feat to navigate. But just the next day as I sat in my hospital room holding my new baby boy, to my surprise, my mom and dad strolled back through the door, less than 24 hours after they’d already been there. My dad said, “She was moping around all day. Finally, I said, ‘Are you wanting to go hold the baby?’ And she smiled and nodded, so I said, ‘Let’s go.’”

Their faces were already melting with delight just knowing they were about to hold the little bundle. I immediately handed him over to my mom. All the years of waiting had finally become reality, and it was so evident in her expression.

And do you know what else my mom and dad did? They sold their beloved home and uprooted from a place they’d lived their entire lives and moved two hours away to my town to babysit my son while I worked so they could finally enjoy the retirement years being grandparents (Ginger lived in California so that was a little to far to move to).

They hadn’t yet found a house to buy in my town, so in the beginning, my mom would leave my dad on Sunday nights, make the 2 hour drive, and stay with me all week to watch my son while I worked. On Friday nights she’d drive all the way back to their home town. On the weekends she still worked part time for her brother, and she’d cook up a bunch of food for my dad for the week, and also work on packing up their house for an eventual move. How exhausting?! But that’s how she always was: doing what needed to be done for her family. I never expected her to drive down every week, but she insisted. What a blessing to not have to worry about who was watching and caring for my child, knowing he was getting all the love he could ever want.
She did this for over 2 months.

While my mom was at my house, her sister-in-law called one day. “Glenn doesn’t seem to be doing too well. I think he’s sick.” she said.
In October, only 3 months after the baby was born, we knew something was wrong with dad.
His diagnosis was lung cancer. He had been a coal miner most of his life and coal dust had invaded his lungs before I was even born. Eventually this caught up with him.

In November my parents were finally able to buy a house and make the move. My husband, son, and I moved in with them, as we decided it would be best and easiest for everyone considering the new development.

That time was filled with medical appointments, treatments, sickness, and heartache, but it was thankfully also filled with joy from long-awaited baby snuggles and giggles. My sister and her twins came to visit a few times as well, and my mom had made a couple trips to California, too.

Despite dad doing impressively well with treatments and responsiveness, he very suddenly and unexpectedly passed away, about a week shy of my son’s 2nd birthday.

The suddenness was extra devastating, especially for mom. Mom and dad were supposed to be enjoying their grandkids together like they’d always wanted, and he’d died before they were even two years old.
The next year or two had some grief and isolation, as the pandemic hit 8 months later. My mom continued navigating her grief and dealt with some health issues during that time.

In 2020 a surprise again: another grandbaby to bring some joy.
My daughter was born in April of 2021.

Nanny and her new baby girl were two peas in a pod.

But by the next year it was evident that mom wasn’t feeling well. She hadn’t been able to play with or watch the kids much for a while at that point, and nothing was helping her neck pain and fatigue. We didn’t know what to make of it.
Spring of 2023 the slurring of her speech began, and by the end of each day she wasn’t even able to hold up her own head.

In August of 2023 her family doctor suggested ALS - absolutely devastating for her to hear - and her official diagnosis came in October.

Everyone knows the rest of the story.

My mom and dad had big plans as grandparents.
They did make the most of the time they had, but there was so much more to do. Dad got less than 2 years; he didn’t get to meet my daughter, whose finger he’d have been wrapped around. My mom barely got 7 (with even the last 2 years of that being overtaken by illness).

So, from almost the very beginning of that story it was marred with strife and sickness. But of course, they were the best, most loving, reliable, present grandparents while they were here, the same kind of parents they were that makes me miss them so much.

I understand that there are stories that are much more tragic. And I also understand that my parents would have been sick anyway and that in God’s sovereign, divine plans, their grandkids gave them the most possible joy during their illnesses. And I’m so thankful that these kids did get a taste of that special, magical kind of grandparent love that my parents had. But, I will always feel the sting of this wound and I will never get over what could have been.
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I went onto a forum a few months after reading that book to see what others had thought of it and the ending. Most people were sorely shocked and disappointed like I was. There was someone, though, who took the time to carefully and thoughtfully explain why the book ended that way, and how it tied all of the themes and intricacies together with everything that had happened. And I could finally grasp the reasoning and logic in the ending of the book. I still didn’t like it, but I understood the depth of the author’s decision.

Maybe I won’t understand as clearly why my parents had to both go so quickly, and I surely won’t ever be ok with it, but I have heard that God’s plans are like a tapestry, and that’s what I hold to.

“God’s plan is like a beautiful tapestry. And the tragedy of being human is that we only get to see it from the back. With all the ragged threads and the muddy colors. And we only get a hint at the true beauty that would be revealed if we could see the whole pattern on the other side…as God does.”

When someone dies, there are obvious things you sort through and donate, dispose of or displace into a box on the shelf. But then there are always the unobvious things that are not a glaring closet full of clothes or a big 1960s jukebox. Things that fly under the radar until they want to be seen.

One unimportant day I suddenly saw her keys still hanging from the hook behind the front door. It startled me. Why hadn’t I noticed them there over the last few months? She hadn’t been able to drive since her diagnosis, and we sold her car well before she died. But her key ring with other keys still hung there.
I’ll do something with them later.

Then I noticed the Ensure shakes still in the very back of the fridge. Nobody who is here now drinks those. There must be 7 or 8 of them. The calories she relied on the last several months. I’ll throw them out later.

At some point I also noticed the flour and corn meal in the back of a refrigerator drawer. Cornbread. I was raised on cornbread because my parents were raised on cornbread. My mom’s cornbread was good, the country kind. She made it at least twice a week in her cast iron skillet that was her mother’s. She liked a particular kind of cornmeal, too, that she could only get in our hometown. So when we’d visit she would stock up.
One day about 4 months into her diagnosis, already on a walker and unable to hold up her head, she decided she’d make cornbread. She hadn’t cooked anything since her diagnosis. But she wanted cornbread and she was too selfless to ask me to make it. In fact, I wasn’t even home when she tried. My husband was, but she knew he was too nice to stop her. She actually wasn’t supposed to even eat cornbread anymore because it is one of the top foods that can choke someone who has trouble swallowing. But honestly, my mom would probably rather choke on cornbread than not eat it at all.

When I got home, I immediately saw it: flour was everywhere. All over the floor, the countertops, the stove, the inside of the refrigerator. Maybe my little girl had gotten into it? My husband was standing there and I looked at him, perplexed.
“Your mom wanted to make cornbread.”
I glanced over at the stove. An uncharacteristically unaesthetic pone of cornbread sat in the skillet, with one small triangle cut out.
“I got the flour and cornmeal out for her because it was too heavy but she wanted to do the rest,” he explained.
My mom would have never spilled so much flour in her kitchen, having always kept a tidy house, let alone left it there without cleaning it up. That’s what got me more than anything. The evidence, not of some spilled flour, but of growing increasingly unsteady and incapable.
The flour and cornmeal are both long expired now. But, I’ll throw them out later.

In the freezer I finally saw a frozen meatloaf and mashed potatoes dinner under some frozen waffles. You see, meatloaf is easier to chew, especially if you slather it in ketchup. Mashed potatoes with extra butter go down smoothly. At first she’d eat the whole dinner. But as each month passed, she’d eat less and less of it. A quarter of the slice of meatloaf gone and maybe three bites of potatoes, then she’d ring a little bell I gave her to get my attention. I’d go in and she’d say, “Wrap this up and put it in the fridge. I’ll finish it tomorrow.”
Except one time she decided she’d try to reduce my workload, so instead of having me come get the leftovers, she tried to bring the tray to the kitchen herself. She made it only outside her bedroom door before dropping the entire thing, splattering it over the floor and walls.
“That’s ok, momma. No big deal.”
Normally never one to cause me any inconvenience (in fact she lived her life to make mine easier), all she said was, “I wanted to eat the rest of it later.”
“I’ve got more and I’ll make you another.”
I had the freezer stocked with them.
There is the one left. I started to toss it in the trash one day but, what if I feel like eating meatloaf one night.
I don’t eat meatloaf.

I did get rid of the bell I gave her, though. I knew my kids would have a good time relentlessly ringing it, but if I heard that bell, it would conjure up a lot of things I can’t handle.

Right now I just don’t acknowledge the walker that is sitting behind my bathroom door. The walker she relied on for the last several months. She only went from her bedroom to the bathroom or to sit on the back porch, but I could hear her coming. It made a very distinctive sound when it scooted across the floor. I’d be in the living room and hear the scraping on the floor as she made her way to the porch. She went out there every morning to sit and have her little cup of coffee I made her and a cigarette. I remember sitting on the couch the next few mornings after the funeral expecting to hear that sound any minute.
Bewildered when it didn’t come.
Anyway, I folded it up and put it behind that bathroom door when I was cleaning out her room. I legitimately forgot about it for a couple months, and then one day I opened the bathroom door with a little more force, and it clattered to the ground.
Oh yeah, forgot about that. I should probably… Later. I’ll move it later.

And, oh- the Lavender Cocomagic body wash from TJ Maxx sitting in the shower...
Even before her diagnosis she had a hard time showering because she would fatigue quickly, couldn’t hold up her head. Showering was a marathon. So not long after her diagnosis I began helping to bathe her. The crazy thing was, she had always said, even years ago, that she did not ever want someone to have to take care of her - but especially to have to bathe her! If she ever couldn’t take care of herself I should put her in a nursing home.
“I would never do that, mom.”
She said that to me on several occasions during healthier times. Insisted, even. But that’s when she didn’t know how ominous her words were.
Sometimes our nightmares come true.

At first she tried to figure it out for herself - the bathing - so one day she decided maybe she’d take a bath instead of an exhausting shower. Being on her feet too long was hard, so she’d just sit. 10 minutes later, I heard her calling for me. “I can’t get up.” She was too weak to stand back up on her own. She looked so devastated and defeated.
Pitiful, even.
I hate that word.
I tried to boost her a little, but truly she had no ounce of energy to lend.
I’d have to lift her entirely myself. At that point she hadn’t lost all her weight and was still 150 or 160 lbs.
“What are we going to do?” She was so distraught.
“Momma, I will get you up.”
“But your shoulder.” I had a shoulder injury at the time. Of course she was worried about me.
“I’m fine mom.”
She knew I could do it. All those years of working out and weightlifting were not for aesthetics. They were for this moment. This is what I trained for.
So I wrapped under her shoulders, got into my good squat form, and up we went.
That whole thing really tore her up.

After that, I bathed her twice each week. Hospice said they’d send someone to bathe her - that was part of their services. I was already so overwhelmed between caring for her and the kids, and all the other life stuff, and the emotional toll, so I asked, “Mom, is it ok if Hospice does it, or do you want me to do it?”
“I would rather you do it.”
I’m not going to lie: I really would have liked for that to have been taken off my plate. I don’t know if it was because it was just one more thing I had to be responsible for, or if maybe it was because it was one of the things that took the heaviest toll on me emotionally. Her most vulnerable state she never wanted to be in - the woman who, in another life, was always so self-sufficient, and productive; the one I depended on. But now…
There was no way I’d turn down her request, nor let her know how much I dreaded it every week.
We used that body wash the entire time. It smells good, soft. The bathing was like a workout for her. When we’d make it back to her bed, I’d put some lotion on her drying legs and arms, and every single time, she’d get tears in her eyes, her voice cracking, and say, “Thank you, honey.” I could feel deeply how grateful she was. It was gratitude mixed with despair. I’d hug her and tell her it was no problem.
I guess I’m glad it wasn’t taken off my plate.

In mid-June the bottle was getting much lighter. I silently wondered if I would I even have to buy more?
As it turns out, I did not. Somehow, we always had enough body wash for her baths, yet once I picked the bottle up after she died, it was totally empty.
The empty bottle still sitting in the shower.

Research has shown that memories associated with smell carry more emotion that visual memories.
Yeah.
Any split-second thought to toss that bottle in the trash immediately made me freeze.
Not yet.

Of course, her cigarettes and lighter still sit in the cubby of the entertainment center by the porch door, as if she will meander by any minute to take them out to the porch to smoke. My mom smoked my whole life. My sister and I spent most of our lives begging her to quit. She tried a few times. But she told me she legitimately enjoyed smoking. She respectfully only smoked outside on the porch so as not to encroach on our fresh air, but if we went on the porch and she was smoking, sometimes I’d wave my hand in front of my face and cough a little. That didn’t phase her.

After her ALS diagnosis she disclosed a secret to me: she’d prayed over the years that, despite her habit, she would not end up with lung cancer.
Prayer answered.

When we went to see a pulmonologist to assess her breathing as part of her ALS care, he ran his tests and said her lungs looked good. Smoking, surprisingly, was not affecting her lungs and that, considering the weight of her diagnosis, she should keep smoking if she really wanted to. I agreed with him.
So, for the first time ever, I didn’t get irked when she’d ask me to pick up a pack of USA Gold Lights on my way home.
I always knew those cigarettes were still lying there. I intentionally did not move them.

Not long ago I saw a quote that finally explained why all these things are still here in their places:

“Sometimes we don’t want to heal because the pain is the last link to what we’ve lost.” - JmStorm

She didn’t always “fix” things for me (sometimes she did) but she was always, always there loving me through it and sharing the weight.

I got a new rug and I need to tell her that because she would care. I was sick the other day and she needed to know so she could worry about me. And I want to tell her how my daughter’s hair stands straight up with static all the way around when she runs on the couch. And my son lost another tooth. And the kids went sledding in all the snow and I’ve been letting them have Happy Meals and they dressed up like Sonic characters with their friends to go watch the Sonic 3 movie at the theater. She’d care about it all. And really I wouldn’t have had to tell her any of that at all because she’d have been there to see it herself because she was always there because she wanted to be. But now I’ve got all these everyday things collecting up like a dam without being able to disperse them to she who would also see their significance, so they’re heavy.

I keep saying to my husband: “I don’t have anyone. I’m not used to not having anyone.” And initially he took a little offense to that, understandably.

But that’s not really what I mean. And that statement in and of itself isn’t really true. There are people I could pick up the phone and call right now who’d listen. Probably even one or two who would show up.

But they’re not her.

I’ve never not had her. Even when she was so sick, I still had her. Even when she couldn’t actually do a thing for me, she did. And she tried. She’d try until her last breath and I never doubted that.

I keep subconsciously getting this feeling that I need to call someone, or I need to go somewhere. And after a moment I realize it is “home.” I’m supposed to call home or go home. Because I always have.
But I can’t. Because she died in August.

In a recent conversation with my sister we were talking about missing her, and we joked about how her advice was not always something we agreed with. Still, we both went to our mom with practically everything.
And she didn’t always have the answers.

But as it turns out, she herself was the answer. Her love was the answer.

My mother’s love was so powerful that you didn’t need to be in the same house, town, or state as her, you didn’t even have to physically talk to her, but you could still feel it so fiercely and profoundly at all times. It was like air, kind of. Just there invisibly, helping to keep you alive.
You just knew everything would somehow be ok simply because she existed. If someone loved me that much, no matter what, everything would surely be ok.
A ceaseless source of the most genuine love.

When I was a little girl and would tell her I was scared that she’d die, she would reassure me with how unlikely it was to happen soon, and then she would tell me that when she did die she would not want me to be sad. She would want me to enjoy my life and be happy.

Well, in time.

If she didn’t want me to be sad then she shouldn’t have been the mother she was.

This photo of her with my daughter, that’s the perfect depiction.

“Grief is the last act of love we have to give to those we loved. Where there is deep grief, there was great love.”

It will be the same hard as every other day.

I’ve struggled a little the last couple of weeks. I do not think it was because Mother’s Day was approaching. It’s just simply settling in lately that I’m going to have to live the rest of my life without my parents.
And I’m actually very appalled and offended by this.

Just a few days ago I had one of the worst break downs since before my mom died. The kind that happened in this story: (The Time I Grieved Her And She Showed Up).
There wasn’t really any reason, except for that I was enjoying my kids, one of those movie-like golden hour moments, and I knew that under other circumstances, my parents would be there to witness and deeply appreciate the joy and laughter. But since they weren’t, I thought I’d call them to tell them about it. But then remembered I couldn’t. So all of that snowballed into mass internal, uncontrollable chaos.
My poor husband.

Anyway, I was thinking about Mother’s Day. All the Mother’s Days.
And last Mother’s Day, that I knew would be the last.

What do you do for that one?

I decided I’d get my mom out of the house, as she hadn’t been out since the TJ Maxx non-mishap (read here). We had to do something. We needed to make it special. Knowing it is the last one is a little bit of pressure, but there were very few things my mom was able to do at this point. So we went for a drive. I usually brought strawberry milkshakes home to her - one of the only enjoyable things she could still consume with ease - so I thought I’d take her to the strawberry milkshake. A milkshake with a view of something other than walls, machines, and an inclined bed. Just mom and I. We listened to her “oldies” music that she always played when I was a kid.

I also had a surprise for her. I had found a beautiful lady kind enough to come to our home, and affix permanent bracelets on my mom and I. I let mom pick out the bracelet she liked, and we got the exact same one, which was then permanently clasped. To take it off, it would have to be broken. We also got one to send to my sister. Mom was over the moon about her new jewelry and she could feel that it was special. “I want to be buried in this,” she said. “Good! You don’t have a choice because it doesn’t come off.” I responded with a chuckle. She’d be buried in it, and I’d have it there on my wrist as some sort of tangible way to have her with me.

I did not get her a card, or write down any words for her last year. I knew my dedication to taking care of her during her illness was a testament to my love - a still insufficient repayment of everything she’d done and sacrificed for me in my life - and, unusual for me, but words were failing me a lot during that time anyway. However, we’d recently come across a box of cards that she’d kept - cards I’d given her for Mother’s Days and birthdays over the years. She had gone through all of them and reread them. I did as well.

One thing my mom told me while she was sick: “You have been so good to me, and when I’m gone you’ll have no regrets to worry over.”

Reading the cards I’d given her over the years was a deeply satisfying reminder that, not only did I cherish my mother when I knew she was dying, but I also cherished my mother under all circumstances.

“Mommy, none of the cards at the store were able to say how I really felt about you because there aren’t enough words to express how much I love you! So, I just got a simple one so I could write in it myself. There is not another person in this world who is like you. You really are the absolute most caring, intelligent, compassionate, selfless person I have ever met. I believe with all my heart that you are the best mother who has ever lived and I thank God for you and dad every day. I think you are the only person who can ever really understand me because we are so much alike. You are the only person in the whole world who can make me feel better if I’m worried or sad. I am so lucky to have somebody there for me always. I hope you know how much a blessing you are, not only to me, but to so many people. I love you and appreciate you!”
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“This card describes you perfectly. I will never know a greater person than you in my life. You are the consistent and dependable rock in my life and I wouldn’t be the same without you.”
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“I hope you know you are the most special person and most wonderful mom in the world. I really look up to you and I am so blessed to have you as my mom. Thank you for always being there for me and making me who I am.”
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“You have been the most important and influential person in my life and I couldn’t make it without you. I’m thinking God put us together on purpose! Hope you have a great day today and always! I love you!”
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“I liked this card because it described you perfectly- except it didn’t say enough. You have truly been the one person in my life who I can depend on and who never fails me. You really are like my best friend and I know I am so blessed to have you. You have been the perfect mother. Thank you for making my life what it is.”
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“As soon as I saw this card I thought of you. I am so blessed because you are my gift from God. I honestly believe with all my heart you are the greatest mother to have ever been.”

So, yeah, that kind of loss is felt every day, not just on Mother’s Day.

But, how amazing that I had that kind of love and support in my life for 36 years.
Maybe some days I’m angry, some days I’m sad, and some I’m pained, but today I’m thankful. Thankful that I always told her how I felt, I always appreciated her, I got time to cherish her in her hardest days, and that I had a mother who embodied what God intended when he created motherhood.

By the way, I don’t get upset to see people celebrating their living mothers on Mother’s Day. I’m not jealous. I love seeing the testaments of wonderful mothers; it’s a special and significant God-given role.
And, I wouldn’t wish on anyone the profound transition from well-loved child to orphanhood. But thus is life. The only thing that would make me upset is people who do not properly appreciate a good mother while she’s still here.
I’m honored to also be entrusted with the role of motherhood that gives me purpose and fulfillment, and to have learned from one of the best on how to do it.

Now that I think about it, I realize my mom was good at showing love in all love languages. This is why my sister and I were spoiled - not because she bought us small “stuff” sometimes. But we actually never lacked in any area of love when it came to my mom. A phone call was always picked up with a “Hey baby!” and encouraging words of love. She showed up to all of our events and made time for us no matter when or where. Hugs were a dime a dozen. And she practically slaved away at serving her family in any facet: food, endeavors, sacrifices…

Anyway, now I have to buy myself things at TJ Maxx.

This time last year I got the bright idea to take my mom to TJ Maxx. She was 6 months post official diagnosis, and she hadn’t been out of the house in 3 months. The last time she left house was an early January one-night hospital stay. And before that was once in December for her trip to the ALS clinic.

Maybe getting her out would cheer her up. It had been months since she’d been shopping. She didn’t drive anymore, she was walking ever-so-slowly with a walker, her speech was declining, she was weak, her fingers were sometimes going numb (indicating an upcoming loss of function), and all of that would certainly make anyone feel a little depressed and hopeless. There was no reason I couldn’t take her to TJ Maxx, push her in her wheel chair, and cheer her up.

The trick would be getting her to agree. At that point, my mom didn’t even want to leave the house, but I just knew getting out into the light, into the world, changing the scenery, would have to help some.

Mom’s sister made her monthly trip to Kentucky from Florida to spend time with her and help me with caregiving. She came up each month for a week to help out, and that was one of the greatest things anyone did for me. My mom and her sister were close, so they enjoyed each other’s company. Good company for my mom lessened the unnecessary guilty sting I otherwise felt when I had to give more attention to my kids and she was alone.

I conspired with my aunt to convince my mom to let us take her out shopping. Reluctantly, she agreed. So, I loaded the wheelchair in the back of her SUV that nowadays sat in the driveway collecting pollen and leaves, and we headed to TJ Maxx. Ol’ faithful.

When we got there, we parked in the handicap parking. I unloaded the wheelchair, then helped my mom out of the car. She was so unsteady. She sat down in the wheelchair, and my 3 year old daughter thought that looked like a fun ride, so she hopped up into nanny’s lap to partake in the ride. My mom didn’t mind. In fact, she loved having her baby girl in her lap. So I pushed them through the doors of TJ Maxx. When we got in the door, I had someone take our picture to document our little trip - ever the historian I am, somewhat obsessed with chronicling my life for nostalgic memories - as I was sure this would be a good memory.

But within one minute of being inside, I knew I’d made a terrible mistake.

The most immediate and noticeable problem that I hadn’t taken into account was my mom’s head drop. An entire year prior - well before her diagnosis - my mom had started experiencing head drop by the end of the day. Around the evening time, the muscles in her neck would tire to the point that she couldn’t hold up her own head. But we didn’t know a thing at that point about “head drop.” Something’s wrong with her neck, we supposed. Within a month or two of her official diagnosis, her neck muscles had permanently failed. Her head hung down and she looked at the ground indefinitely. She was totally unable to hold up her head independently and look at the world as the rest of us do.

So. She couldn’t really even look at all the items in the store. A few times, she would see something out of her peripheral and ask me to hold up her head so she could look at it. The feelings that stirred inside me at having to physically hold up my mother’s head are not words I have. It was one of those wounds you incur inside your body that scar over but never disappears. And we nicked this scar weekly when I would bathe her and she had to physically push her head up so I could wash her neck.

The other reality I failed to anticipate was that there were several other ladies around her age shopping there as if the world was still totally normal. My mom never said out loud that it stung to see others her age going about life normally, but this was one of those telepathic, supernatural instances between two beings who share cells, because I knew that that hurt her. Because it hurt me through her.

And that is when I completely regretted my insistence that TJ Maxx was going to fix ALS.

We strolled around for a bit. When she found something that caught her attention, she would look, but then comment variations of this sentiment: “I don’t know why I’m even looking. There’s no point.”

I felt nauseous. This was all a slap in the face. In her face. In my face. What a mistake I had made. But too late to correct it now.

Eventually, my mom zeroed in on the jewelry table. She did always love jewelry, especially cheap, flashy rings. But also, it was a table and sat low, and it was one of the only things she could look at with ease on her own.

She found a pretty necklace that had an “A” on it. My daughter (whose name begins with A) had just had her 3rd birthday, so a little too late for a birthday present. “Well, I’ll just get it anyway to give her later,” my mom said.

Then she spotted a ring that had a moon and two stars. She picked it up and looked. Sat it back down. Picked it up again.

“Do you like that one, mom?”

“Yeah, but why would I need a ring?!” She sat it down again.

“Momma, if you like the ring, get it. Why not? No harm done.”

She wasn’t quite convinced, so I insisted a little more. I all but shoved it into her lap. Maybe there was some joy to be salvaged here. We went to the checkout with the necklace and ring.

Later that day I went to look at the photos we took in TJ Maxx. They were striking. My mom looked so much sicker, so much unlike herself, than I realized day-to-day at home. She used every ounce of effort to throw her head back for the couple of seconds it would take to capture a photo so that she’d be looking at the camera instead of down at the ground. The photos certainly captured the day.

Still, I’m glad I have them.

My mom put that moon and stars ring on the day we bought it, and never took it off for the rest of her days. When she was asleep with hospice in her final hours, I took that ring off her finger, and it has been at home on my finger ever since. I get compliments on it all the time, actually. Each time I get a compliment, I pause in a moment of contemplation: do I just say “thanks” or do I trauma-dump a whole story? I always just say “thanks,” but sometimes I’ll add: “It was my mom’s.”
It’s an inexpensive ring, with immeasurable value.

Maybe the TJ Maxx trip was a mistake. But, my daughter is turning 4 this week, and incidentally, she is going to have one last gift from nanny: a shiny necklace with the letter A.

I feel like talking about her all the time.
It is a big misconception in our culture that we shouldn’t talk about those gone to the ones left behind. It might be too painful, right?

The secret is that they want to talk about who they’ve lost because that is what helps keep them alive.

My sister and I agreed that at this point, 8 months post-loss, we both think of her (and dad) about every hour of every day. I don’t know the prognosis of grief: if I will always think of her so often, if I will always feel such an obvious void no matter what I do, or if maybe over time some of that dissipates. Anyway, that’s a lot of space inside my mind right now. Which is fine. But that’s why I’m here.

I’ve got plenty of stories to tell, so I get to keep talking about her. But I thought I’d take the opportunity to re-tell a light-hearted and funny one I shared to my Facebook page a few months ago:

Last summer my mom’s ALS symptoms had progressed significantly. By June she was officially 8 months post official confirmation, though her symptoms had been invading long before that. At this point I only left her at home alone for an hour or two at most at a time. She could still walk, but had to use her walker. She didn’t leave her room much, as she had all she needed - a phone, food, a bathroom, books and an ipad - all right there within reach. So I didn’t worry too much about being gone for short periods of time.

One day, my husband was supposed to pick up a truck (and therefore needed someone to drive the other truck back) in a town over an hour away. By the time we drove up there, spent time with business dealings, and drove back, it would be well over 3 hours that we’d be gone. I informed my mom about this situation, and she insisted she would be fine alone. I was worried to death about leaving her that long, and not being close, but I made her promise to message me from time to time letting me know she was ok. I also had people nearby I could call to check on her at a moment’s notice. So, off we went.

Right at the time we arrived at our destination, I heard our security camera alert my phone. Motion at the front door. I pulled up the camera and there was a man at the door. What was strange was that, besides the fact that I didn’t recognize him, I noticed he was intently peeking through the glass of the front door. I panicked a little - as a person who is overly security and safety conscious - but thought, “She never hears the doorbell. And, it would take her several minutes to get up and scoot to the door with her walker, and I’m sure he’d be gone by then.”

But lo and behold, I saw on the video that she opened up the door. And it was at that moment, the video recording started to glitch! I couldn’t tell what had happened, but it almost looked as though the man went inside the house. A stranger I didn’t know, in there with my vulnerable mother! My mind started racing. I refreshed the camera, but the front door was now shut. Did he go in the house? Was he in there now?

I called the phone at the house. No answer.
My heart was beating out of my chest.
So I called my neighbor and explained the situation, asking if she or her husband could go over and check on my mom.

But right at that time, my mom was calling me back. I felt a little relief. If something was wrong she wouldn’t be able to call me back. I wasn’t able to answer her call in time, since I was still speaking with my neighbor. Once I hung up with my neighbor, I saw that I had a voicemail from the call I’d missed from my mom. Instead of checking the voicemail, I just went ahead and called her back.
She answered.
She explained that the guy at the door was from the pharmacy and was dropping off her medication. And no - he did not come in the house. She was still fine. Whew.

After hanging up, I went to listen to the voicemail to clear it from my notifications.
I wasn’t expecting to glimpse her old endearing, sarcastic, dry sense of humor, but this is what she struggled to say in her shaky, slurred, slow speech: “A good-looking man came to the door. I’m going to run away with him. Bye.”

(This is one of the only recordings I have of her voice once it deteriorated significantly. I think it was very painful for me to hear her that way, and it got a little worse before she died. Mostly, it is ingrained in my memory as a sound my brain would never let me forget. I’m glad I have this humorous recording.)