Dear Mom, Our Final Act

Dear Mom,

I just lost you, but it somehow feels like I’ve already lived an eternity without you.

How is it possible that I will never see you again?

How am I still breathing, when you aren’t?

I thought I would be more prepared for this loss, for your death. We have spent years preparing for your death, all of us in our own individual ways. I’ve read all the books, scoured all the literature about anticipatory grief, most of which said that with prolonged anticipatory grieving, people often just feel relief when its over.

Well, I don't feel relief.

None of the books told me that it would feel like someone reached in and ripped my insides out, beat the shit out of them, and then shove them back in and then say: “Here you go, now try to keep on living with this mangled mess of insides.”

No one told me how hard it would fucking hurt.

Yes, I am so glad you are free of suffering. The end was awful, it must have been so scary for you, and I am SO grateful you held on long enough to let us all come back and reassemble at home. Thank you.

But –

It fucking hurts like hell.

The pain is literally physical, beyond what I had prepared myself for.

I am broken without you.

“Other than my milk glass scores, that is what I would call a garbage sale,” I said to Kelsey. She laughed, and then my phone pinged.

I looked down, and it was a text from Dad that simply said, “She’s gone.”

No, no, NO!

NO.

That can’t be true. We were supposed to be around you when you went. You were NOT supposed to die alone!!

I frantically tried to get a hold of him. It took probably 2 minutes, but it felt like an eternity. He very simply, through choked sobs said again,

“She’s gone. She just went to sleep.”

I said I didn't understand.

I opened my car door because it suddenly felt hot as fuck and like I was being suffocated. The world was suddenly a totally different place spinning around me.

I was at a shitty garbage sale when I heard you were gone from me, forever.

Did you suffer? Were you scared?

I hope not.

I fucking hope not.

Based on what you looked like when they found you, you were in the exact same position you were put to sleep in, so it appears as if you just…went to sleep.

My heart is BROKEN.

Kelsey reached over and gave me a long, tight embrace. I sobbed and wailed.

How could you have died while I was at a shitty garbage sale?

I should have been with you.

And I am so sorry.

I am so sorry I wasn’t there.

Kelsey took my keys and drove me all the way from Lake Stevens to you so I didn’t have to drive in the state I was in.

Jennifer, Hudson, and Shyawn were already there.

I walked into the house not at all prepared for what I might find. I was scared, Mom.

So, so, scared.

I have written your eulogy a thousand times in my head, imagined your funeral just as many. I also imagined your peaceful moment of passing, surrounded by all of us, us telling you it is ok to go.

But –

I never imagined this. For some reason, I never imagined having to go to you AFTER you died, what your empty, dead body would look like.

I guess because that was too hard for me to think about.

The books didn’t prepare me for this.

I walked into the bedroom, the bedroom you shared with your sister as a child and the room I shared with Jennifer as a child, and Jennifer was standing next to you.

I needed to be close to you, so I grabbed the closest thing to sit on that I could find.

Guess what it was? It was your mobile toilet commode. I thought you would find it fucking hysterical that I sat on a goddamn toilet next to you. You loved fart and poop humor like no one else.

I thought it was fitting.

If I wasn't so goddamn broken, I might have also thought it was funny.

Someday, maybe, when I tell this story, that I held vigil next to your body until they came to take you away sat upon a fucking toilet, it will be funny.

But not today.

I asked Jennifer to get your Chapstick. Your lips looked dry. I believe I inherited my Chapstick addiction from you. I of course, took it to new heights.

I gently applied Chapstick on your lips, and told you I didn't want your lips to be dry.

You were so cold, but your lips were still velvety soft.

After I snapped the cap back on, I ran my fingers over your lips. I wanted to make sure there weren’t any Chapstick chunks, and I wanted to feel your lips.

Then I asked for a hairbrush. Sorry to say, but you had some bedhead happening, and I knew you wouldn't like it. So I brushed your hair as best as I could, and tucked the whispy pieces around your face behind your ears, just like you like it.

You had a few stray hairs on your neck, which you have always HATED, so I removed them.

I decided I needed to have some of your hair. I asked Cris to find me some scissors. Without skipping a beat, he turned around and found some scissors. I apologized to you as I cut it; they were dull, shitty, Fiskar scissors. God knows how old they were. I did a hack job. I apologized to you for making your hair look so shitty. I tried to tuck it away and brush it so it sort of looked like intentional short side bangs.

I put your hair into a Ziplock bag.

I straightened your shirt, pulled your sleeves down like you like them. I didn’t want it to be bunched up and uncomfortable.

Once I finished with these things, I held your hand.

It was SO cold.

But it wasn’t so cold that I couldn't wrap your fingers around mine.

I held your hand to my cheek and I cried.

I cried an ocean of tears.

Then I just talked to you. I told you I would miss you, that I love you so fucking much.

I stroked your arms, massaged your shoulders. I made you promise to never leave me, to somehow let me know you are with me, because I couldn't bear to be separated from you permanently.

I traced the lines in your hands with my fingers, hugged you, and kissed your cheeks and forehead.

Everyone came in and out during this time, checking in on us, but I think they knew I needed time, just you and I.

I tucked your blankies around you tighter; I didn’t want you to be cold, even though it was sweltering outside. Mom, it was the hottest day of the year so far.

You loved the sun. I hope there are sunbeams on you right now, wherever you are.

At some point, the cremation place called me on Dad’s phone. I talked to them and they said they would be sending two guys out to take you in an hour or two. She explained that they would take really good care of you and be really gentle. When they said that, I broke down on the phone.

I held your hand the entire time.

Spunky also came to say goodbye. He cozied up and laid right on your hands.

When I got off the phone, I decided I wanted to wash your face and neck, your normal morning routine, and our normal nightly routine when I took care of you at night.

As I held your hand, through a tear-streaked face, I looked up at Cris and asked him to get me a wet washcloth, because I wanted to wash your face. I asked him to make sure it was warm.

He didn’t skip a beat. He said of course.

He brought us a warm washcloth, and said he made sure it wasn’t too hot. He also brought a dry towel to dry you with.

I am so grateful for his compassion, kindness and patience and the way he has taken care of both you and I during this long road.

I washed your face. I rubbed down your forehead, washed over your eyes, rubbed away the “eye gookies” from around your eyes. Wiped behind your ears, over your nose, your lips, and around your neck and chest. I told you what I was doing during each step.

I decided the dry towel was too rough to dry you with, so I grabbed your white, silkie-soft blankie I got you a few months ago when I re-did your room.

I traced it over your face, and told you that I hoped it comforted you, like my baby security blanket, “my fluffy” did when I was young. As you know, my fluffy was also white and silkie-soft.

I am glad we both had a fluffy at the beginning and the end.

Then I wrapped the blankie around your exposed shoulders, up to your chin; I didn’t want you to be cold, so I made sure to tuck it in behind your shoulders.

I reapplied another layer of Chapstick, just to make sure your lips were nice and moist. It is what I would want.

At some point, I had to go to the bathroom, so I asked Cris to sit with you and hold your hand. I didn't want you to be alone.

He didn't hesitate. He took position up on that goddamn toilet, and held your hand.

He said I had been holding your hand for so long that it felt warm again.

I went to the bathroom and came back, assuming my toilet seat next to you.

I decided that the clump of hair wasn't enough, that I wanted to put a hair thing around hair and lop it off, so it wasn't just a clump of hair. I sent Cris on a mission to find some scissors that weren’t made for a 3^rd grader and bought in 1996, and something to tie your hair with. He came back with 4 pairs of scissors, and a rubber band. He apologized for not having something better; I told him you wouldn't mind.

I wound the rubber band around your hair, on the side I hadn’t hacked off. I told you I thought I would at least try to make the hack job symmetrical. I laughed when I finished the little baby ponytail. I told you how funny it looked, like something someone would do for crazy hair day. Cris handed me another pair of scissors, and they too, were dull. Then he handed me garden shears. That did the trick.

One smooth close of the shears and your baby ponytail came away.

I am sorry I hacked away at your hair with shitty scissors and garden shears.

I spent the next hour or so just talking to you, you and I.

Taking in your every feature.

I took photos of our hands intertwined, and of your hands placed peacefully upon the blanket. Some people might consider this morbid, but I needed it. I process all of my feelings and emotions not only through writing, but also photography. I’ve become so passionate about not only capturing life’s beautiful, picture-perfect moments, but also ALL of life’s moments, even the intensely sad ones. I am so afraid that my grief will cause me to not remember the details, so I have been documenting everything as best as I can. I will treasure these photos always.

Always.

Oh, how I will miss you something fucking fierce.

I promised to take you with me, everywhere. In the big moments, and in the little ones.

That when I have my babies, you’ll be there. And they will know you, even if they can’t feel you, they will know you.

I promise.

I talked about all the foods I was hoping you were eating, your favorite black licorice, popcorn, and drinking a cold glass of Rose. I said I hoped you were zumba-ing it up, running, laughing, talking. I said I hoped you were with your beloved Grandmother, who you lost so many years ago and I knew you always missed. And with your Dad, who just recently left us, and with Grandma Goldsbary. I am sure she greeted you by putting her hands on your cheeks, gave you a kiss on the cheeks and said, “Well, hi honey!” in her sing-song voice. I told you I hoped you were petting all of our beloved and departed kitties. How happy Tiggy, Beebers, Chubbies, your beloved Babies, Muffy, and all of those who pre-dated my life, would be to get some pets and love again. I said that Sadie was probably so happy to see you, finally a human she knows! She probably jumped up on you in her crazy way, so excited, and gave you a big sloppy kiss. I laughed and reminded you about the time she ate all of the bacon you made for spinach salad for Michael’s graduation party all those years ago. Two entire packs! You were so mad. I even laughed as I told you. Bad Sadie girl. I am sure she is wagging her tail next to you now. I am glad you have a friend.

Oh, I hope you aren’t lonely. Or afraid.

Tom and Colleen stopped by. They wanted to say goodbye. When I saw them out front, I asked you if you would want to see them, I explained that I wasn't sure what the right decision was. I said I wish you had told me more about what you wanted. Everyone came in and asked if it was ok for them to interrupt our time, and that I could say no. I said they could come in, but that I wasn't leaving. I remained steadfast, on the toilet, holding your hand.

Your brother was quick. It was clearly hard for him. He stroked your hair once and said, “Oh, girl,” choked back tears, and looked up at the ceiling. He added, “I am glad you are no longer suffering,” and walked out.

Colleen was so tender with you. She stroked your hair and said, “Oh girl, you fought so long and so hard.” These simple, tender, love-filled words pierced me and the tears fell down fast. She added, “You were the best friend I ever had.”

She stayed for quite awhile, just stroking your hair. I am sure you liked that.

It was the right decision.

I wanted to get your ring off of your finger. The ring Jennifer, Michael, and I gave you for your 50^th birthday with our birthstones on it. I couldn't get it off, I was afraid I might cause damage. I enlisted Cris’ help, and he also could not get it off. He got some string and Vaseline and gently tried to gently coax it off your finger to no avail. He promised he would ask the cremation guys to get it off for me.

Periodically I checked in with everyone to make sure they didn't want alone time with you. Everyone came and went, but I think they knew we needed this together.

Everyone deals and processes grief in our own individual ways; it doesn’t change how much any of us loved you.

You and I have spent so much 1:1 time together over the course of my life; we were companions and friends, as you of course know. Shopping buddies, Disneyland fanatics, lovers of all fart and poop related jokes.

During this time, Hudson was out and about in the yard, just playing with Great Grandpa. Watering all of Grandpa’s flowers. I opened the windows so you could hear him. I know you would have liked that.

Jennifer came in with Hudson, and Shyawn, for your little beloved Hudson boy to say goodbye.

I gave up my toilet throne for Jennifer to sit with Hudson.

Oh, Mom, I thought I might die from the pain of this little sweet and innocent goodbye.

Hudson sat on Jennifer’s lap.

He was so quiet.

Jennifer explained to him that you weren’t going to be there the next time he came because your body was sick and had stopped working. She told him that he wouldn't see you anymore like their kitty, Tiger.

Jennifer put her hand and his little chubby dimpled baby hands over yours. I took a photo because I never wanted to forget. 

Then he put just his hand on yours.

It felt like someone reached through me and removed my lungs when he whispered:

“Bye, Nana.”

And then did his little I love you hand sign that you and he shared.

It felt like I might not ever be able to breathe again.

Then he went outside to dig some more.

Sweet, sweet Hudson boy.

A few minutes later, Jennifer came back in, trailed by Shyawn and Cris. She told me the guys were here to take you. I again told you what the lady on the phone told me, that they would take really good care of you and be really gentle. That you didn't need to be afraid.

When I caught sight of them with the stretcher, I collapsed on you. I wailed from a place of deep and agonizing pain. I am sure I sounded like a wounded animal.

I said I didn't want them to take you, I wasn't ready.

I know, Mom, it probably seems silly. I had been sitting with you for hours, and after all, you were dead.

Jennifer looked at me and said, “This isn’t her anymore, she is gone.”

Cris looked at me with the utmost compassion, and said, “It is time.”

Through a tear-streaked face I just nodded.

The guys came back, and explained how it was going to work, and I think they knew I needed more time. They asked if we wanted more time and to take all the time we needed, they had no where to go.

Michael and Dad came in to say goodbyes. They had both been in and out all morning. I think it was especially hard on them to see you like this.

When Michael enveloped you with a giant hug, and let out a wailing cry, it shattered the remaining intact parts of my heart. 

Your tender-hearted, compassionate, caring, kind, emotional, Michael.

Oh, little brother.

I told him that he did so good with you, taking care of you this past year. And that he was THE BEST son anyone could ask for. I could see the back of his head nod.

He loved you so good, Mom.

So good.

He stood back up and said he needed to go outside, that he had said his goodbyes. He didn't want to see you taken away.

Everyone else said their goodbyes, and then it was just you and I again.

I told you I didn't know how to let you go, that I didn't want to let you go. I said that I needed a sign that it was time for me to let you go.

At that exact moment, a gust of wind blew through the window and shut the door.

Was that you? Am I just inferring from a random act of nature?

I don't know. But I took it as a sign.

I kissed each of your cheeks, your forehead, hugged you tight.

I told you that I will love you forever and ever, and think of you everyday, miss you everyday, and your loss will never be easy.

Then I said, goodbye, I love you, see you later, goodnight, I love you, see you later. As we have always said for my entire life.

Our final act.

I will cherish it always.

Always.

Even though it felt like I died a million times over beside your bed, my heart was somehow still beating and I managed to stand up and walk out.

I don't remember if I moved that damn toilet.

I walked out and joined Jennifer, Shyawn, and Cris in the living room. The guys went back and assured me they would take really good care of you.

When they were in there, I became panicked and asked Cris to ask them to wheel you out with the bag open, I needed to see you once more. I also begged him to ask them how long they thought you had been dead. He put his hand on my shoulder and said they won’t know. I again begged, and he said ok.

He came back out and said they would keep her face exposed and explained they couldn't say for how long you’d been gone.

I was hoping for some quantitative information that might make me feel better to understand if you had been aware or unaware of the moment you passed.

I didn't get it.

Oh, Mom.

I am so sorry I wasn't there.

Cris did, however, re-emerge from the room with your ring. I slipped it on my finger. I haven’t taken it off since. Your hands are bigger than mine, so it doesn’t really fit well on any finger. It still feels uncomfortable; I am constantly cognizant of its presence on my finger. It feels kind of like my pain, I don't need a visual reminder, I can always feel it.

They wheeled you out. You looked so small, your body shrouded in an industrial plastic black body bag.

I smoothed your hair back, gave you one final embrace and kissed your cheeks and forehead again. When I was cheek to cheek with you I whispered:

You don't have to be afraid anymore. Everything is going to be ok. You will always be with me, and I will always be with you. I love you. Love you, goodbye, see you later.

And that was the last time I saw you.

I think I did die a million times over in that room.

Yet, here I am.

At the Hinge: A Tribute to my Beloved Mom

I wrote this last week while traveling to DC, 10 days before my Mom died. I never posted it. But 24 hours after losing her I picked this up again. I never thought that when I was writing it she would be gone by the time I hit “post.”

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Hudson, my nearly 3-year-old nephew, sat next to me nestled under the crook of my arm while he watched intently, but not without concern, as my brother Michael, his, “Uh Uh” (uncle) suctioned my Mom. She was hyperventilating and he was trying to clear secretions with a suction machine, which entails a suction tube being inserted down her throat. She was on her BiPap (breathing machine), and I had given her morphine and other anxiety medications to try and calm her down. Her color was changing and her lips were turning blue. It was incredibly scary to watch.

Would this be The Moment?

ALS does not go quietly into the night. The end is not pretty.

It is awful.

Hudson turned to me, “Ah-Ah?” (What he calls me):

“Why-eee Uh-Uh shhh shhh?” as he made his best attempt to mimic the suctioning sound.

“Because Nana can’t breathe very well, so he is helping her.”

“Why-eee?”

My brother turned around, “Don’t worry, Hudson, I am not hurting Nana, I am helping her.”

“Why-eee?”

I explained to Hudson, “Grandma’s lungs don’t work very well, so she needs help to breathe sometimes.”

“Why-eee?”

“She has an owie in her lungs.”

I put my hand and then his hand over his lungs, and told him to take a deep breath. I tried to explain in an age-appropriate way how lungs worked and that “Nana” (he can’t say Grandma or Grandpa, so calls them Nana and Papa) needed help to have her lungs work.

“Uh-Uh help Nana” he said, more as a statement than a question.

“Yep, Hudson, Uncle is helping Nana.”

“Why-eee?”

“Because Nana has something called ALS, which gave her the owies in her lungs.”

“Why-eee?”

“I don’t know Hudson. Sometimes it just happens, and we don’t know why Grandma got ALS.”

“Ohhhh. Ohhkay.”

Her hand reached to touch his toes. An extraordinary act of love because it was an extraordinary physical feat. It is like taking a bullet each time I look at it.

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I sit here writing this from seat 6F; the bulkhead of an Alaska Airlines flight bound for DC. I wasn’t sure if I would make it here, on my way across the country to DC to see one of my very best friends, Erin, graduate from residency, and then onto Toronto for a conference. My Mom is not doing well; she is at the end by any measure. There have been untold times over the last 5-6 weeks where we thought; the moment is now, today is the day, this is the weekend.

She has surprised us time and time again, pulling through when even Hospice thought she wouldn't.

ALS is a tricky disease; it is hard to predict and doesn’t frequently adhere to the usual predictable patterns of death.

If being honest with you all, and with myself, when I planned this trip months and months ago, I assumed my Mom would be gone. We’ve always known we would never be able to predict when she would go, but we also never predicted how difficult it would be to tell when the end was near.

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My Mom was diagnosed with ALS in November 2013, and the road has been unimaginably long.

This long road has afforded us the luxury of time; but it has not come without a heavy toll. I, along with every member of my family, have been in active states of mourning for nearly four years. That is a long time to mourn and be sad; it is a unique state of being that most will never experience, thankfully.

Whether thankfully or unfortunately, depending on your individual take, many people die quickly. Perhaps they go without warning; maybe it is a sudden heart attack, a fall down the stairs, or a car accident. Even with a diagnosis like cancer, a prolonged state of dying with no potential of recovery is exceedingly rare. If it isn’t obvious, let me be clear:

It is hard. It is excruciatingly difficult to slowly watch someone slip through your fingers.

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I was at dinner with one of my dearest friends, Jessica, the other day. I was recounting the years of ALS. She asked when exactly my Mom had been diagnosed. Jessica and I have been friends for 2 years, and as such, my Mom was already sick when I met her. When I told her the length she simply, yet eloquently stated:

“You’ve been grieving for a long time. Almost 4 years is a long time.”

It IS a long time. I realized in that moment, that my Mom has been dying for approximately 12% of my life, which I blurted aloud.

My brain sometimes works in weird ways.

I rehashed each year of her ALS diagnosis, its own unique epoch; hard and beautiful in their own ways:

Year 1: 

Year 1 was simultaneously the most awful, horrific, life-flipping year of the disease, yet also wonderful and full of living life to the edges. We were all still in shock, actively mourning and actively reimagining our lives without her. It was also what is termed that, “Golden Year” in ALS – when you have the diagnosis and know you will die, but still have some time left to live life, say the things you need and want to say, do the things you always meant to do. In Year 1, I was personally a wreck. A professional Hot Mess if you will. I also am a person of action and a do-er. So I did what I do best and sprang into action to get her into the care of one of the world’s leading ALS doctors and started planning trips. In Year 1, just weeks after the diagnosis in November, myself, my Mom, sister, and two Aunts took a girl’s trip to Walla Walla for wine-tasting.

My sister announced she was pregnant around Christmas, which was such an incredible ray of light in the dark early days. 

The holidays in Year 1 were simultaneously disorienting and magical, no one could avoid thinking about how many more we might have and what they would look like when she is gone.

In January, I took my Mom to Disneyworld and Florida with Colin. 

In April, she, my brother and I gallivanted across Italy and Greece for over two weeks, visiting Santorini, Rome, Tuscany, Florence, Pisa, and Venice.

 In June, we celebrated my Mom’s 60^th birthday with a massive 60^th birthday surprise blowout and then as a family in Kauai and Oahu, which also marked my Mom’s early retirement.

=

Then we all experienced the joy of Hudson being born in August, giving my Mom a new title: Grandma.

Jennifer's Baby Shower

My absolute favorite photo of my Mom <3

In September, we participated in our first ALS walk and fundraiser, organized by my parent’s Shelby/Mustang crew of friends who raised thousands of dollars for ALS research. 

During my sister’s maternity leave  in October, she brought my Mom and little Beeb Hudson to Palm Springs where my Mom also got to experience a trip in First Class for the very first time!

Shortly thereafter I took my Mom to see Oprah speak, it was an incredible 2-day experience.

We finished Year 1 with a trip to Disneyland, just my Mom and I.  It would be our final trip to Disneyland together.

The year was simultaneously magical, and heart-breaking. 

Life occurred at a dizzying pace. 

We all couldn't help but think, “Is this the last plane ride? The last trip to Disneyland?” It was also of course full of incredible, life-changing firsts: A lifelong awaited trip to Europe for my Mom, brand new grandbaby snuggles, and lots of new adventures, memories, laughs and love.

Year 2: 

Year 2 was probably the most “normal” and “easy” of each of the 4 epochs. My Mom was still relatively “normal” and mobile, and could get around with a cane, then a walker. 

She also was no longer working, so was able to care for and watch Hudson for my sister when she went back to work. At first, she was able to do it alone, and later,with the help of my Dad and Grandma to get Hudson up and down the stairs. I am sure those months of 1:1 time with her only grandchild were some of the best and most treasured moments of her life. I am so grateful she got to experience them.

One of my most favorite photos - on my sister's first day back to work, my Mom made this sign and sent it to her. It kills me now.  

One of my all-time favorite photos of my Mom.

"Oh, Hi Grandma!"

In January, my Mom and I went to New Orleans together, which was bittersweet because I knew it would be our last trip together as Mom and Daughter; it was getting too difficult for her to travel. 

We named her Ali.

Beignets!

Rebel.

We continued to mark bucket list items off for her, including glass blowing and a ride on the Ducks in Seattle. 

We celebrated her 61st birthday over a long weekend away as a family on Camano Island. She had just started using her scooter, so we had some fun scootie adventures.

Only the essentials

We took professional family photos in the summer, so we could have beautiful photos and memories to remember our Mama with, always. 

The holidays this year were the last where she could talk and help prepare food, something we always relied on her for and looked forward to. For Halloween, myself, my Mom and Dad went out as full-force HRC crew. I was Hillary, obviously, my Mom an ardent supporter, and my Dad was undercover secret service. At Thanksgiving, she shared her famous gravy tips of the trade with my sister.  

One reason Hillary's loss was especially painful for me was because I knew my Mom would never see a female president, and it broke my heart.

We were adjusting to what this new normal life with ALS is like, and were starting to understand the loses we would experience in the future. But mostly, we were just sucking the most out of life and love that we could.

I can still hear her old voice: "Mmmm behbaaay!"

 Year 3: 

In Year 3, we started to realize just how difficult and excruciating this disease is. She started using her electric wheelchair, and lost her ability to speak. My parents also bought their super cool wheelchair van. However, even with the heavy loses, there would still be happiness. 

I got engaged in Year 3, and my Mom was able to watch me try on wedding dresses and surprised me by buying my dress for me. A rite of passage I thought I wouldn't have.

The dress!

We celebrated what would be her last birthday, her 62nd, on the peninsula with her brand new sparkly wheelchair. Grandma and Hudson both had lots of fun.

 

Hudsons' 2nd Birthday

Hudson trying on his ring bearer outfit for Nana

And most significantly, in October, she got to watch me get married, which is one of the greatest gifts I will ever receive. It meant so much, particularly because when we got the diagnosis, I didn't think she would get to be a part of my special day, which was particularly soul-crushing for me.

My Wedding Shower

Michael and my Dad took on the heaviest caregiving load, along with my Mom’s caregiver, Debbie. ALS takes an army. My brother shouldered so much for us all, literally and figuratively. Steadfast, loyal, and always there. Oh, sweet Michael. 

Year 3 was hard. It would prepare us for Year 4.

Year 4: 

We are over halfway through Year 4 (*ETA: Sadly, I wrote this in the days leading up to my Mom's death, she made it 8 months into the 4th year of her ALS battle.)  This would be our last holiday season with her. We all knew it would likely be her last Christmas; it was such a bittersweet season. Oh, Mom, it will never be the same without you.  I just don't know how we will celebrate without you. My soul is broken at the thought.

Year 4 has been excruciating at times. There has been more pain and suffering than joy, which is hard for everyone. She lost her ability to talk, text, walk, stand, or really do anything without complete assistance.

Ever present Michael in the background

My Mom made it to Mother's Day; none of us thought she would. It was one of the most excruciating days of my life. Oh, the hurt was so raw knowing it would be her last. We all had many breakdowns. Mom, this day will forever be one of the hardest days of my life; I just don't want to do it without you.

Mother's Day Pedi Pop-up Shop!

It would turn out these would be the last photos of us together.

Yet, there was still joy to be wrung out.

A new room!

A few weeks before her death, my parent's wonderful group of friends in their Shelby and Mustang Clubs arranged for one last rumble for my Mom, known as a "Rolling Thunder." It was a wonderful surprise for her to see 20+ Shelby and Mustangs roaring and revving down the street. A parade in her honor. What a wonderful parting gift the club gave her.

Waiting for the parade!

Surrounded with L-O-V-E

Look at all those fancy cars!

This extended period of mourning has brought my family, my Mom, and myself so many moments of both incredible love, and incredible loss. They go hand in hand, you cannot separate one from another.

As I finished rehashing the last 3.5 years, I was again struck by that number:

12% of my life.

It is even higher for my younger brother, still in his 20s.

Almost unbelievable, really.

12% is a long time.

It has been a long, long road.

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I have struggled recently, not feeling quite “ready” to let her go. About a week ago, I got the 3^rd call that week from my Dad saying, “You need to come up, she’s dying.”

I responded almost robotically. My first thoughts went to needing to pack some food to eat up there. There have been so many brushes with death in recent weeks that they have become routine.

When I arrived, my Dad and brother had gotten her calmed down, and she was asleep. A few hours later, she woke up and her breathing was relatively stable. She wheeled herself out, stopped her wheelchair next to my sister and held out her hand. My sister grabbed it, held it, and my Mom started to cry. I got up and hugged and held her, choking down hot tears.

We all realized the same thing without saying it aloud: it was time. 

Maybe not today; but it is time.

The end is near.

Later that evening, when it was just she and I, she motioned for her word chart. I brought it to her and she spelled out that she thought she was going to die earlier.

I looked at her and said,

“I know. That must have been so scary. Were you afraid?”

She nodded yes.

“Are you afraid anymore?”

She moved her head side to side.

No.

I wasn’t sure if she meant she was no longer afraid in that exact moment, or if she was no longer afraid of death in a larger sense. I didn’t feel like I could engage her in an esoteric discussion without upsetting her.

So instead I asked through the guise of a calm face which belied my inner agony:

“Are you ready?”

She again nodded her head, side-to-side.

No.

I swallowed what felt like hot daggers.

I thought: I am not ready. I am going to miss her so, so much. I am just not ready.

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A few days later, the family was all assembled again for our now normal weekly family dinners.

I decide to massage her hands. I wanted a way to feel close to her, without making it so obvious to upset her. The problem is, when she cries it becomes dangerously difficult for her to breathe, and as of late she gets upset at almost anything so we have to tread cautiously for her own well-being. So rather than just holding her hand, I massaged them for a long time. Tracing the outlines of her fingers, rubbing my hands along her palms. Etching into my memory what her hands feel like, look like.  Filing it away in my heart, desperately trying to hold onto those features to be able to recall in the future.

I LOVED the movie Beaches when I was young; it was a movie my Mom and I loved to watch together. I don’t know how many times I’ve seen it. I remember thinking that my Mom dying would be the worst, most horrific thing that could ever happen to me. How would I deal with it? Perhaps it was the universe preparing me. A scene that always stood out to me, even prior to her diagnosis, is when Barbara Hershey and Bette Middler are at the beach house when Barbara Hershey is nearing the end. She starts a frantic search for a photo of her mother’s hands, anxiously explaining that she can’t remember what they look like. They find a photo of her hands, and she suddenly remembers them. I thought of this scene in the first few days following her diagnosis. I think of it again in this moment.

File away.

File away.

Don't forget.

Her eyes were closed and she was clearly relaxed.  I looked up at her, and for the first time really saw her experience.

I thought: She is acutely suffering. There is little if no joy left. It is time for her to go.

Hot, silent tears rolled down my cheeks.

It was time.

File away.

File away.

Don’t forget.

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I oscillated for weeks whether to take this trip. It has been one of the most difficult decisions of my life, truly. I realize some people may judge me for leaving her at this time or not understand.

Jessica told me,  “No one who truly knows you and knows what you’ve been going through will judge you.”

I was slated to leave on Wednesday. On Tuesday evening she was having a “bad day.” I had already made the decision I was going to go, with the consent of my family and of my Mom.

I was rife with guilt. What if she died while I was away? What if I didn't get to say goodbye?

Something I’ve been working on and talking about with my counsellor for many months is becoming comfortable and accepting of the fact that there are many minutes and hours in the day, and many days in the week, and weeks in a month. I cannot possibly hold vigil at her bedside at all hours. I must sleep, eat, work, and exist as a human.

She has reminded me that the reality is, most people die without people holding vigil around them, and that just because I am in the same zip code, or even in the same house, does not mean I will necessarily be there at the moment she takes her last breath.

She recounted her own experience with her sister's death, her entire family held vigil around her bedside at the hospital for weeks.

Her sister ended up dying alone when they all stepped out for coffee.

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 We can’t control or predict death; and if we think we can, we are deluding ourselves.

As I left on Tuesday evening after putting my Mom to bed, not knowing if that would be “The Last” time I saw her, I cried and was so unsure of my decision. I told her, “I will see you next week,” more as an order than a question, but the question hung in the air regardless of my delivery. I looked to my Dad and brother, who live with her:

“Will she die while I am gone?”

My brother didn't think so.

My Dad said, “I don't know, I’ve stopped trying to predict. She keeps surprising us. But you gotta let it go, girl. Let the guilt go, you've done all you can do,” and gave me a hug, and the tears came down.

Ultimately, I changed my trip so I left a day later and returned many days early, cutting my trip in half. I didn't feel like I could comfortably leave with her like she was on Tuesday, so I moved my flight 24 hours later and spent that next evening with her. That extra day with her, which happened to be a “good day,” made me feel more at peace with my decision. I have also been given express permission by my boss to do whatever I need to do, even if that means getting on a plane, landing, and turning around and getting right back on a plane to go home. ETA: I am so grateful I trusted my gut, had I not, I would have been on a plane when my Mom died. I am oh so grateful for those last few days with her.

I’ve been holding vigil, we all have, for weeks.

In case you’ve never done this, while it is an honor and privilege to hold this sacred space, it is also exhausting. It wears on you mentally, emotionally, and physically. I am exhausted in mind, body, and spirit.

So here I sit, in 6F.

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I posted a few posts back about a Moth Hour talk on NPR by Kate Braestrup that I heard while driving. She is a Maine State Wildlife Service Chaplain, who lost her husband while she had four young children. The piece was entitled, “The House of Mourning.” It has become a security blanket of sorts for me, having listened to it many times. It never gets any easier; the tears stream down time and time again. However, I none the less hang onto the words, feeling some peace that other people have felt what I feel now, that I am not alone.

I started reading her book, “Here If you Need Me” while in French Polynesia, and just finished it on this plane ride. An unusual choice of reading for a self-described, “Agnostic-atheist” to be sure. As a God-believing Christian Chaplain, she is not exactly an author I would have chosen on my own accord.

It, however, has been one of the best and most important things I have ever read in my life.  It has taught me so many valuable lessons, including that I can find solace in unexpected places.

In, “Here If you Need Me,” Kate Braestrup discusses her relationship with death; both as a widow, and as a chaplain where one of her primary functions is to respond to the recently bereaved, who she describes range from the, “Faithful to Faithfree.”

She elaborates at length throughout the book about people’s varying reactions and responses to death, from the, This is all a part of God’s plan // God needed them // This all happens for a reason that only he understands to the, Where is God? // Why would the death of a child be a part of God’s plan? // Why would God do this?

I have over the many years of my Mom’s prolonged dying experience, had time to think about how to make meaning, if there is any, of this awful ALS experience. I have struggled to come up with a narrative that resonates with me on some level. Lots of well meaning individuals have tried to console me about my Mom’s diagnosis somehow corresponding to, “A Plan” with a capital P that we just cannot understand.

But, I don’t believe that narrative. I just don’t.

I truly mean it when I say it is wonderful if that helps get you through the day and the tough times, it just isn’t something for me that resonates with me on any kind of level.

I don’t believe that a room full of kindergartners were shot at Sandyhook because there was some preordained Plan, or that all of the awful, horrific suffering throughout the world, or fucked up things done to humans by other humans, occurs because there is some Plan that is just beyond our comprehension. I don’t say this just because I am not a religious person, I just feel like if there is a God, and he is a Just God, why would he allow for such awful, fucked up shit?

I have never had an eloquent way to answer my own question, until I read this incredible excerpt, from a clergy member of all people. When one of her children asked her why their Dad had to die, she (Kate Braestrup) offered them this:

“It was an accident. There are small accidents, like knocking over your milk at the dinner table. And there are large accidents, like the one your Dad was in. No one meant for it to happen. It just happened. And his body was too badly damaged in the accident for his soul to stay in it anymore, and so he died. God does not spill milk. God did not bash the truck into your father’s car. Nowhere in scripture does it say, ‘God is car accident’ or ‘God is death.’ God is justice and kindness, mercy, and always – always – love. So if you want to know where God is in this or in anything, look for love. “

She then goes on to reference a previously told story of a little girl who drowned in a lake:

“The death of the little girl with the red mittens is not God’s will or plan. It is physics and biology, the bearing capacity of frozen water, the point at which hypothermia causes a small body’s systems to fail. Don’t look for God in the breaking ice or the dark water. … Here is my answer to the theodicy problem in a nutshell: Frank took the child out from under the ice with his own hands, tried to give her his breath, and his heart broke when he could not save her life. Frank is the answer.”

Thank you, Kate Braestrup, for so eloquently giving me an answer that resonates with me, even without sharing a belief system with you.

We, as humans, want to tidily tie up uncomfortable or sad or horrific events by assigning meaning to them – because if there is NO meaning, if it was just random, what is the point of the suffering?

As I explained to Hudson, while we watched my brother suction my Mom:

“I don’t know Hudson. Sometimes it just happens, and we don’t know why Grandma got ALS.”

We just don’t know.

Sometimes it is just a super shitty lottery. The proverbial short end of the stick. It just sucks. There doesn’t have to be a deeper meaning attached to the WHY she got ALS.  WHY did it have to be MY Mom?

I don't know.

We don't know.

We will never, ever know.

Does that mean beautiful things have not risen from the ashes? Of course not.

Of course not.

Oh, the beauty. It hurts so good.

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Watching Hudson’s unconditional love for his grandmother throughout this harrowing journey, particularly the end of this journey, has been a source of incredible joy and learning for me as an adult.

Hudson, at not even 3 years old, is able to look at my Mom in a truly pure and unadulterated way. By his essence of being innocent and NOT being an adult, he can see past the chaos, tubes, awful sounds, and her appearance. All he has ever known is THIS Grandma.  His Nana.

He has shown wisdom far beyond his years. Throughout his hours of play and digging and banging and following Uh-Uh or Papa around the yard doing cool stuff, he pops in to check in on Nana, sometimes just to say, “Hi, Nana!” and goes on his way; other times he hugs her legs, lets her pat his head before barrelling out to the next patch of dirt to dig.

His simple way of saying, “I love you. I am here. I see you.”

He lacks the ability to project his future grief onto that moment. He of course can’t conceptualize the fact that she won’t be at his kindergarten graduation, let alone his high school graduation, like my grandparents were. He can’t think about the future impending loss, it doesn’t come rushing down on him in those moments. He is just fully present in the now, and the moments are full of love.

He has taught us so much.

Hudson and his love is the answer.

Trust children with the truth about grief, dying, and mourning. They can handle honest information when presented in an age-appropriate way. I know the automatic response is to shield and protect their tender and innocent hearts and spirits, to pretend like you know all the answers to the questions they ask, but you don't have to because they can  handle it -- 

Hudson helping Nana with some Chapstick - a common occurrence. 

 I promise you, they can.

Children are remarkable with grief and dying. It seems to be us adults who muck it up by leaving the present and thinking about our future losses.

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 “It doesn't matter how educated, moneyed, or smart you are: when your child’s footprints end at the river’s edge, when the one you love has gone into the woods with a bleak outlook and a loaded gun, when the chaplain is walking toward you with bad news in her mouth, then only the clichés are true, and you will repeat them, unashamed.  Your life, too, will swing suddenly and cruelly in a new direction with breath-taking speed, and if you are really wise – you will know enough to look around for love. It will be there, standing right on the hinge, holding out its arms to you. If you are wise, whoever you are, you will let go, fall against that love, and be held.”

Thank you, Kate Braestrup. Thank you.

And thank you, Hudson, for showing us how to love unconditionally at this incredibly painful hinge.