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

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.

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.

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.

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.