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With Love and Grief

Love is not some kind of victory march, no. It’s a cold and it’s a broken Hallelujah. -Leonard Cohen

I read once that if you simply cannot understand why someone is grieving so much and for so long then you should consider yourself fortunate you do not understand.

I feel like I have been grieving for years. I have no concept of what life is like without it. It is as present within me as my heartbeat. Grief is the most consistent feeling I feel-minute after minute, day after day. It is a part of me. Forever now.

It almost feels like a comfort. The one constant in my life. The one guarantee that I have, my grief. And in many ways how incredibly lucky am I to feel it, to have loved so deeply and so purely that it has turned into ever present grief? It’s as if grief is the last act of love I have to give.

Grief often feels like my heart breaking over and over again. Sometimes exploding and shattering. Sometimes cracking quietly, but always breaking. Always reminding me it is there. I’ve learned to embrace it, often leaning into it. I recognize that where there is immense grief there is also immense love.

It’s become a new way of seeing for me. It is not something I can heal from. I must accept it, endure it, even trust in it.

I am living proof that a broken heart can still beat.

Grief is a part of me. Not all of me. Love, love is what has all of me.

Featured

For My Mama, with love

No one is alone.

Sometimes people leave you, halfway through the wood. Do not let it grieve you, no one leaves for good. — Stephen Sondheim

My mother has Alzheimer’s. She was diagnosed with it at 59 years old, but really, she’s “had” it her whole life. Just as I am sure I do. And devastatingly, just as my daughter does. It’s a heart wrenching disease. One, for me, that is filled with so much sorrow, grief, and anger.

My mother left me when I needed her most. She left me as I was becoming a mother myself. She left me when I was navigating an entire life I had never known before. And, by no fault of her own, she left me when I was approaching some of the most painful times of my life. She left me. Halfway through my woods.

It is a complicated mix of emotions. The utter sadness I feel for my mother’s life being ripped from her is enough to make me not want to get out of bed some days. The pain I feel that my daughter will never be able to experience my mother as her grandmother the way they both deserve rips through me at times. And the anger I feel that this disease has stolen my mother from me, in times when I have needed her most, is overwhelming.

Often when people are trying to find the words to comfort me, they will say things like “your mother is still in there, she still is your mother.” And maybe that is true. Maybe I see glimpses of her when I happen to catch her laughing. I might see pieces of her when she is enjoying a really good dessert, an afternoon of music, or listening to my father read poetry to her. But for the most part, I see the flesh of the woman my mom used to be. I see the agony of a memory that slipped away far sooner than it should have. I see the pain of the people who love her. And I feel the absolute anguish of losing a parent before they are actually gone.

My mother left me. I grieve the loss of her every day. But, I also celebrate the love of her every day. I celebrate it by being the strongest woman I know how to be. I celebrate it by being the best mother I can be. I celebrate it by showing kindness to strangers. I celebrate it by reading to my daughter, the way my mother always read to me. I celebrate it by fiercely loving those who matter to me. I celebrate it by living, for both of us.

And it’s true-what Stephen Sondheim has said-no one leaves for good. My mom is here. Right here inside of me.

Surrounded by love and grief.

I Hope

I hope you never lose your sense of wonder, you get your fill to eat but always keep that hunger.

-M. Sanders and T. Sillers

My Dearest Girl,

I hope you never have to call my doctor and ask him to reevaluate his diagnosis.

I hope you never bake with me and I no longer remember my own recipes.

I hope you never take me shopping and see me burst into tears realizing I’m incapable of making a decision.

I hope you never see my handwriting deteriorate until I can no longer put pen to paper.

I hope you never experience becoming a mother amidst losing your own.

I hope you never watch your child become scared and confused while I shout, uncontrollably.

I hope you never have to hear of your friends’ parents babysitting their children while I sit in a nursing home, unable to walk.

I hope you never have to hear me lose my words; never ache to hear my voice.

I hope you never spend your days obsessively reading about the life expectancy for a person with early onset Alzheimer’s.

I hope you never listen to my screams of sorrow.

I hope you never know the heartbreak of me looking through you, no longer knowing who you are.

I hope you never see me lose my light.

I hope you never hear that I have stopped eating, preparing myself for the inevitable.

I hope you are never afraid to go to sleep, petrified that I will die while you rest.

And I hope your own child never has to read these words that I write to you now.

But, most of all, my dear Remington, I hope you forgive me for bringing this devastating disease into your life.

With an immeasurable amount of love and grief,

Mama

With Strength and Grace

Your eyes are soft with sorrow. Hey, that’s no way to say goodbye. -Leonard Cohen

When I was in high school, I wrote my father’s eulogy for a Speech class I was taking. It seems odd to do this, but in a way, it gave me comfort. I felt it was a way to rehearse for the inevitable, a way to process the pain before it even started. My 17 year old self likely spoke of his love for music and baseball. I am sure I talked of how he taught me to compete and the lessons I learned along the way. There was humor in it, the way my father would want there to be. And, of course, sadness-a great deal of sadness.

Now, over 20 years later in the middle of a pandemic, I find myself doing the same thing for my mother, trying to prepare myself for the pain. I lie awake at night picturing her funeral. I think about how I will want her obituary worded as my father has tasked me with that honor. I write it over and over in my head. I think of who will speak her eulogy and what that person could possibly say in a brief moment to sum up my beautiful mother’s life. I try to picture her dying, whether I will be able to be there with her or not. I think of how I will say goodbye, if given the opportunity to do so.

When I do this, I am often reminded of the day my grandmother died. My parents and I were there with her, holding her hand as she drew her last breaths. Watching my grandmother die was one of the hardest things I have ever had to do. And I would have thought it would feel the same for my mother, but she was extraordinary in that moment. She handled the entire day with an immense amount of strength and poise. She cracked jokes in hopes of making my grandmother smile. She spoke softly and kindly. At one point my grandmother whispered to my mom that she was scared. She knew she was dying that day. And instead of breaking down herself like I did, my mother held her hand and surrounded her with love.

Often when I think of my mom, I think of a sweet, lovely woman-a woman you would envision in a television show with an apron on, baking cookies for her family. But on that day, the day my grandmother died, my mom was a warrior. She handled her own pain gracefully and quietly, solely focusing on my grandmother’s final hours. She was the epitome of strength, continuing to put her family first, as she always did.

And as I know the days are approaching that I will be faced with having to be in the position my mother was in with her own mother, I can only hope I will have as much strength and grace as my mother did. I hope I can be a fucking warrior for her. I hope I can keep the sorrow from my eyes and comfort her until the very end. I hope that I can show my daughter the same lesson my mother taught me about death. I hope the day she dies is full of love and as much light as I can provide for her.

And when her eulogy is spoken I hope it includes this:

June loved with her entire heart, stood strong even in the toughest moments, and lived gracefully, right to the very end.

I love you, Mama. And I am terrified to lose you, more than I already have.

With love and grief,

Your daughter

Let It Be

And when the broken-hearted people living in the world agree, there will be an answer, let it be.

-Beatles

I don’t know if there is a better word in the English language other than broken-hearted to describe my pain right now. It’s increasing every day. Every minute. I miss my mom so incredibly much. From the moment she was diagnosed, I have missed pieces of her. Sometimes softly. Sometimes loudly. And, sometimes, like right now, devastatingly. I do my very best every day to put on a mask, for my daughter, for my work, for myself. And sometimes that mask works just fine. It does the job, covers up my pain. And sometimes, the mask isn’t enough. Sometimes I wish I could shed this entire body, and more importantly, this entire soul, and my very broken heart.

For my heart truly is broken. In a million pieces. For the adult relationship I never really got to have with my mother. For not being able to share the bond of motherhood with her. For all the times that I can see that her mind has something to say, but words fail her. For my daughter who missed out on having my mom as her grandmother. For the pain I see in my mother’s eyes at times, welling up with nowhere to go. For the woman I lost. For the heartache I’ve gained. And for the fear I live with every day that I am going to wake up to news that the body that houses my beautiful mother has given up.

I lay awake for hours at night, worried that somewhere, hundreds of miles away, my mom is taking her last breath. I lay awake thinking about her hands. The ever present freckles on them. The cool touch of her skin. Her hands that held me as an infant. That hugged me hard when I needed it. That held mine tightly when I was scared. Her hands that wiped away my tears and lifted me up when I fell. Her hands that created so much for her family in the way of comfort, kindness, and quiet strength. Her hands that I make sure I continue to squeeze tightly every single time I see her. To remind her that I am there, and that I love her, with all of me.

I am terrified of never being able to hold her hand again. Her beautiful hands. Often it feels like they are the only part of her that is left. The only part that this disease hasn’t stripped from her. Yet. I know that time will come, when her hands disappear too, like the rest of her.

And for that day, and for so many other reasons, I am fucking broken-hearted.

With an unbearable amount of love and grief.

I’ll Tell You What I’ll Do

I was walking down the road, not caring much where I was going. A heavy pack upon my back, burly good with inner sad of loneliness when fluttered by this bird of blue. He said “I’ll tell you what I’ll do since you seem to be so sad, I will try and be your glad.” Bluebird of happiness. -Joan Baez

I sit in my sadness often. More than I should. Every season, every holiday, every day, every victory, every failure, and every moment I allow myself to be swallowed up by my despair. It runs deep. And it hurts like hell.

I fucking miss my mom. A lot.

I feel like I am completely incapable of going through another holiday season like this. With her, but without her.

Every year I try my best. I put on a brave face, visit my mother with gifts in my hand and a smile on my face. I sit with her. I talk to her. I do my best to bring her some sense of joy. But, inside, I am crumbling the whole time. I cannot bear to “celebrate” in this way with my mother, who loved the holidays so very much. I cannot bear to take our annual picture, with my mom looking older and sicker each year, not smiling, not looking at the camera, maybe not even knowing what is happening. It’s too much, and it weighs heavy, like a pack on my back.

I can’t be the happy, spirited daughter this year. I just can’t do it.

But, I’ll tell you what I’ll do…I will remember the lifetime of cheer my mother gave to me, making me a homemade Christmas ornament every year, singing carols while she bakes her famous cookies, hosting Christmas year after year for the whole family. I will remember all the effort she put into giving me the best holiday season I could have. I will remember her inevitably buying too many stocking stuffers for my father and having to wrap gifts last minute that won’t fit in it. I will remember the late nights and the early mornings. I will remember how she made so many cookies so that everyone she loved could have some. I will remember her sitting in the rocking chair late at night while I laid under the tree, staring at the lights, talking to me about life. I will remember her, as she was, in her favorite time of year. I will remember.

And I will show up for my girl, the way my mother showed up for me. And I will try and be her glad, for as long as I am able. I owe it to my mother. I owe it to my girl. And I owe it to myself.

I’ll be with you soon, Mama. With an immense amount of love and grief.

The Art of Selflessness

Both my parents taught me about goodwill. And I have done well by their name. Just the kindness I have lavished on strangers. Is more than I can explain.

Ani DiFranco

My mother was the most selfless person I have ever known. It feels odd writing the word “was” when talking about my mom who is still alive, but that is is how I feel. She was selfless. She is not anymore. She can’t be. She can’t be anything now. But, it’s true, my mother was selfless. She always thought of others before herself, often to her own detriment. Even when she entered the nursing home, nearly two years ago, she made every attempt to help others-trying to calm them and talk them through their pain. For as long as she was able, my mother helped, anyone she could, any way she could.

Oddly, it drove me crazy. I used to look at it as a weakness. I thought she let people walk all over her. I thought she sacrificed so much of herself for others, never really using her voice to express her own needs. She was relentless in her pursuit to help others, volunteering years of her life to both local and state PTA. She adopted children every Christmas to buy gifts for them. My mom always donated what little money she had to help someone in need or to support a cause that was important to her. She was the first to make food for a friend or neighbor that was ill or when someone had passed away. So much of her identity was linked to what she did for others. Sometimes I would want to scream at her (and I think once or twice I did!) to do something for herself, to find what makes HER happy, to speak up when she was drained or not ready to take on something else.

What I didn’t realize then, and for years, was that being selfless was who my mom was. She was all heart. And just because her happy didn’t look like my happy didn’t mean she wasn’t happy. She was. She was so happy.

And now, here I am at 38 years old, just returning from a trip to California where I spent time working a charity event for a nonprofit, recognizing for the first time that maybe I am more like my mom than I ever thought. She taught me the importance of giving back through her incredible actions. She showed me that kindness and compassion matter above anything else. And even though, due to her disease, she no longer has the ability to act selflessly every day, in a way, she still is. For her life of selflessness has propelled me into a life of giving as much as I can, as often as I can.

I hope I am doing right by you, Mama. I owe who I am to your incredible spirit.

With a tremendous amount of love and grief,
Your daughter

Try. And then try again.

Just because it burns, it doesn’t mean you’re gonna die. You’ve gotta get up and try. ~Alecia Moore

One of the biggest voids I find while I continue to struggle with the “loss” of my mother is that I no longer have the privilege of hearing her voice any time I want. Words are extremely limited now. I could be with her for an entire day and not hear her utter a single word. There is no option to turn to her for advice or comfort. That has been ripped from us all now. Like so much else.

I can remember one Christmas season after college I was determined to make my mother’s peanut butter balls (buckeyes for the rest of the world.) I had watched her do it every Christmas for as long as I can remember and knew what to do. She sent me the recipe and off I went, creating my mom’s tradition for my own little family at the time. Except, I used granulated sugar instead of powdered sugar. It was a complete disaster. I called her in tears. I was literally sobbing on my kitchen floor while talking to my mom. She sat on the phone with me as I went through every extreme emotion I was feeling from being a failure to not feeling like I could be a good domestic partner. She let me just sob and sob.

And then, when I was finally done, she told me to go get powdered sugar and do it again. I told her there wasn’t a chance I was putting myself through that torture and mess again. And she just said to me in the softest, loveliest voice, “Amy, you have to do it again. You have to try again.” And, of course, she was right. As ridiculous as this sounds, that experience has always stuck with me. The way she supported me through something as silly as using the wrong ingredient in a dessert. There was nothing in her power my mother wouldn’t do for me. She always showed up for me. And she always reminded me to try.

It is one of the biggest pieces of my mother that I hope to carry with me, proving to my daughter that unconditional love and support exists. For that is how my mother loved me, without judgement and completely full of love and support.

Life has felt exceptionally hard for me lately. There are days I am struggling to get out of bed. There are days that I do not want to leave my condo. Some days the thought of having to make my daughter’s lunch for school feels impossible. There are days when the heavy weight of all of my responsibilities is too much to bear. Sometimes my anxiety is so intense that I just lay in bed and cry for hours.

And on those days, I think of my mother. And I hear her tell me that I have to try. I have to try again. So, I do. With a tremendous amount of love and grief.

It’s more than music.

I hurt myself today, to see if I feel. I focus on the pain, the only thing that is real. -Johnny Cash

My relationship with music runs deep. It always has. I can remember being very young and playing Olivia Newton John’s Physical album on my father’s record player. Clad in leg warmers, leotard, and sweatbands on both head and hands, I would dance around our living room and feel every part of the music-the beat, the lyrics, even the silences in between. I loved hearing the record start to spin. I would sit as close as I could to the player and watch it go around and around. As I got older my brother and I would take turns listening to various records, Michael Jackson being a favorite of ours. I have a very distinct memory of sitting on our carpeted floor, right in front of the record player with both my father and brother listening to Harry Chapin’s Taxi for the first time. I was young. It was impossible for me to understand the lyrics, but I will never forget the way it made me feel. I felt like I was being told a secret, something that was only for my ears, something that would be significant in my life.

And it has been. For any time I hear Taxi, it instantly brings me back to that moment on our living room floor. It brings me back to a connection my brother and I shared with my father. And that moment, that particular song, started my great love of music.

From that moment on, every important event in my life has a soundtrack to go with it. A song that defines that period of time through perfect lyrics. A song that guts me. In celebration and despair. Through joy and utter pain. After defeat and triumph. And through love and sorrow.

Interestingly, my mother was the one person in our family who really did not seem to care about music at all. She would like to put on a Christmas album or two while decorating the house for the holidays, but other than that, I don’t think it played any important role in her life. It was something my brother and I bonded over. It was a connection to my father. But, to her, it was just background noise, entirely indifferent to it all.

I can remember Kurt Cobain dying and how angry and downright desperate I felt knowing I would never hear Nirvana put out another song for as long as I was alive. I was 13. And other than a neighbor dying when I was younger, I had never experienced loss. And this was loss. In the deepest sense of the term for my teenaged self. I turned to my mother for comfort. She did not understand. She could not understand how this felt for me. For she did not understand that music heals me.

After my best friend died, I listened to his favorite band on repeat for the longest time. The day my daughter was born, I had a playlist playing all through my laboring. When I got divorced, I turned to music, as I always do, to get me through. When my father had a heart attack in January, I made a list of every song that made me feel connected to him and played it the whole three hours it took for me to get to the hospital. And, at least once a day, for what feels like an eternity now, I have played Johnny Cash’s Hurt just to make sure I am still feeling, still alive.

Ironically, now that my mother is suffering from Alzheimer’s, music is one of the few things she enjoys. It brings her joy. It calms her. She is engaged and happy, often singing along. And although I know it is not healing my dear mother, I am so fucking grateful for it being in her life now. For it is a way for me to continue to feel connected to her, to share in something that matters so purely and deeply to me. Something that she did not understand then, but remarkably, does now.

It’s more than music to me. It’s as important as the air I breathe. And it is listened to, loudly, with an immense amount of love and grief.

Birthday Blues

Happy Birthday to you. Happy Birthday to you. Happy Birthday, dear Mama. Happy Birthday to you.

On Tuesday, April 23rd, my mother will turn 66 years old. It should be a day of celebration. She should be able to decide where she wants to go for dinner. She should be able to open her gifts on her own and enjoy them. She should do whatever her heart desires on her day. It should be a day filled with love, laughter, and a little luxury for my mama.

She won’t be doing any of those things on her birthday. She will be in a nursing home, eating whatever it is they are serving in the cafeteria that day. She won’t be able to open any gifts, and frankly, at this point it’s hard to even think of something to give her. If we are lucky and she is having a good day, maybe she will be able to sit outside for a few minutes and enjoy the chocolate cake my father is bringing for her, but there is no way of knowing. There is no way of knowing if she will even understand that it’s her birthday. There is no way of asking her what she would like for her special day. There is no way of celebrating her in any significant way.

This is true for any given day. It’s the nature of the disease. I could travel 3.5 hours to see my mother only to have her scream the entire time I am there. I can go to visit her and she could be asleep the whole visit. I can make the trip to be with her and she will have no recollection of who I am.

Or, she could be smiling. And laughing. She could be singing and chatty. She could squeeze my hand tight and give me a kiss. And once in a while, she can still even mutter, so very softly, “I love you.”

Those are the days that I hang on to with every part of me. It’s all I have left of her. The faint I love you’s. The occasional hand squeeze. The kiss on my cheek. Any brief moment of recognition when I know she knows it’s me, her daughter. Any sign that my mom is still in there, still my mama.

It feels impossible to celebrate my mother in this condition. Even saying Happy Birthday is uncomfortable for me. There is no true happiness here. I do not want to celebrate my mom getting a year older like this. I actually dread it. For every year older she gets, she gets that much closer to the end of the life expectancy for someone suffering from Alzheimer’s.

I will not celebrate that. I cannot celebrate that.

May your birthday be as peaceful as it can be, Mama.

I will be right here, thinking of you, with an immense amount of love and grief.