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1. Magic Lightbox

Dear Lucas,

One full year has passed since I wrote you. You fantastic little shit.

My best friend’s son is growing up before my very eyes. Six years old now. I think of you every time I spend time with him, and I spend time with him often. I wonder what it will feel like to love a child more than I love Finn. I wonder if love can expand that wide.

fetal imageThis week I took Finn to see the prenatal exhibit at the museum of science and industry. Positioned behind looking glass, there were so many tiny embryos and fetuses, each prevented from surviving by natural causes or accidents.

I thought of Seamus, another friend’s son who was born to the world but died just before turning two. And the twin babies that came later from Seamus’ mother, the two who just turned two. So many tiny children, awake, asleep, alive, dead.

My capacious ability to love children—to love humans—bewilders me.

Today is my mother’s birthday. Her alive self would be 66 years old. Her dead self is almost two years old. My time without her in the world has been so difficult, and it has also been sublime. When every cell of your body is entwined with another from the moment you are conceived, it is complicated love.

I did not write to you this past year because there were no easy words to convey. People look to me for answers about parent loss, caregiving, early onset Alzheimer’s disease, and holding on to your partner during the years when you are caring and losing and grieving. I say there are no answers. I say you should feel everything. I say you should feel nothing. I say I am better, and they will be too, and then I dream nightmares, and I am not better. None of us can ever be better when there is so much loss.

I did not write to you this past year because everything did get better. I stopped numbing myself with alcohol. I stopped terrorizing myself with memories of moments that were terrifying. I drove around the western states for three months until I remembered I could be alone with my own mind again—and not be frightened.

desert road

I did not write to you this year because I was watching for myself to come home again. I pressed my eyelids closed with the palms of my hands, and I remembered that it was all true and it is all over. I remembered that I cannot go back and alter one single moment. I cannot make my mom alive when she is dead. I cannot be someone other than me. There is only now and forward. This is nothing and everything.

And, I did not write to you this past year because I was watching for your other mother—she who occupies the most tender eyelets of my heart—to come home again. I stopped locking my elbows, and I let the damp space evaporate. I stopped worrying about drowning in the grief, because I knew I would not. I was, in fact, simply moving through the current, finding my way back to the person—to the love—by which I remain utterly transfixed.

She waited, Lucas. She waited for me.

Now we are waiting for you.

Happy birthday, Mum.

me


Tagged: Alzheimer's, death and dying, letting go, maddening grief, mother loss, prenatal entanglement

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2. The Lachrymatory Factor

Dear Lucas,

Peeling a sulfur-rich onion is painful, literally and figuratively. The layers, so weighted down by flavonoids, can be slow moving. We have been eating some delicious soup these days, but my corneas are burned, along with my fortress built of furnace filters. It seems there is no choice now but to concede to my own vulnerability, to dig another fingernail under the translucent skin and pull. Until there is nothing but this rich core. Exposed. Ready to be caramelized.

And by the way, my wee sweet onion, where are you?

me


Tagged: Brené Brown, courage, daring greatly, fuck filters, living authentically, shame, vulnerability, worthiness, wow

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3. Mumento Sábado

Dear Lucas,

I awoke around 8:45am and your other mother was just returning from a walk with her sweet dog. The two of them sauntered up the stairs, stopping every few steps to trade smiles and tail wags.  There was a package in tow. The mail had arrived early for Saturday.

I rolled over in bed and perched myself on one elbow. I placed a pair of eyeglasses on my nose and accepted the slim box. It was addressed to “The Tiny Redhead’s Parents” with no return label. I peeled back the brown paper and inside were a letter and photo. I began reading.

        My Daughter,

        I feel so canned these days.

I stopped reading and moved my eyes quickly to the signature.

        I love you,

        Your Momma

Back to the top, I observed the date: 2005.

I looked at the photo. It was an 8” by 10” color print of your other mother, me and your grandmother. We were at the beach. We were standing apart, each of us filling a separate corner of the frame.

I looked back at the words, but I failed to achieve focus. Somehow Mum has written a coherent letter eight years ago and then crafted a way to delay delivery until nine months after her death.

A river of tears came up from the center of my heart.

I awoke again. It was 8:45am and your other mother was just returning from a walk with her sweet dog. The two of them sauntered up the stairs, stopping every few steps to trade smiles and tail wags. The bedroom door cracked open and they peeked in to say good morning. There was no package in tow.

“I had such a vivid dream just now,” I said. The river of tears quickly changed places from my heart to my eyes to my cheeks to my pillow case. I could only compose short, incomplete sentences. Certain grief tilted my voice toward a higher octave.

“Maybe this is just your mom’s way of saying she’s got her eye on you,” she gently replied. I nodded and closed my eyes. I longed to be asleep. I longer to see my letter again.

Instead I wrapped myself into your other mother’s arms and pressed my face against her neck. I stayed awake. And I dreamt of you.

you my heart

Ocean Mum


Tagged: dreaming a dream, letters, maddening grief, mother lode, the mind is an ocean

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4. Ten Years Ago in Africa

Dear Lucas,

I have been thinking about Africa this week. Waxing nostalgic for a land that made me feel so alive, despite the daily hardship of existing in such a foreign environment. It is on my agenda to take you there—a vast continent containing such extraordinary diversity and beauty—and show you the places where I dug deep wells filled with contentment, disenchantment, love, pain, joy, despair and a thrilling, intoxicating sense of total invincibility.

Victoria Falls

It suddenly occurred to me that the 10 year mark passed several months ago. I arrived into Windhoek, Namibia as a Peace Corps volunteer in April 2003; I was 29 at the time and searching for answers to so many things. Now, a full decade later, I am more aware then ever how many little lifetimes can crowd themselves into a single lifetime. As Zora Neale Hurston was once quoted: “There are years that ask questions and years that answer.”

I imagine one day you will have so many questions for me, as I remember having for my ol’ lady, she who is no longer with us. (At present I believe Mum is making a white Russian for a newly deceased cat named Monster.) What happened during all of those years before I was born? And all of those years when I was alive but took for granted that you had a life too?

I was 18 when I left my Chicago area home with little hesitation. I was desperate for an escape from strip mall suburbia, my fragmented family, and a severely broken heart. My priorities for choosing a post-secondary university were skewed; distance from home and price were what mattered. My English teachers raised their eyebrows, my friends scratched their heads, but before I knew it, I was driving my little red Nissan through Indiana, Ohio, Pennsylvania and then New Jersey, where I landed as one of 49,000 students attending the colossal institution called Rutgers University.

At the time (yes, perhaps now too), I was a self-proclaimed writer—poetic, dramatic, tragic—and compelled by both passion and fear to trade football games and fraternity parties for the isolating indulgence of literature. The details now, so many years later, are somewhat nebulous, but there remains a shadow of clarity too.

I recall he was born in South Africa, studied in England, and now in New Jersey his massive frame was wrapped in a perfectly tailored suit, glasses perched on his long nose, his voice deep and roaring against the painted brick of our basement classroom.  The fluorescent lights added purple tones to his coffee-colored skin, and we watched his expressions carefully while he read his favorite passages to us slowly, feverishly, from the novel called Invisible Man by Ralph Ellison.  It was our professor’s tome, and it was the only book we read that semester. Together we devoured the intricacies of a young black man’s personal transformation in racist America, and from this story I drew inspiration to chart my own course, however uncommon or improbable.

Ralph Ellison Quote

I transferred to Grinnell College the following year—a minuscule liberal arts institution in the middle of cow-tipping Iowa—and immersed myself in African and African American history classes.  The black American experience particularly fascinated, inspired, confused and angered me.  The more I learned, the more I needed to know.  The stories from Raines’ My Soul is Rested and Du Bois’ The Souls of Black Folk churned in my heart and formed a deep respect for culture, community and social justice.  I had been lucky as a child to travel beyond our country’s borders, to Russia, Germany, Scandinavia, Canada and Mexico, but now my interest in traveling centered around Africa, not only to visit, but to possibly find a home.

Over the course of the next ten years, during my long and winding preparations for overseas exploration, I moved from place to place. Eventually I found work with kids on an urban playground at an alternative school in North Portland. I inhaled everything and everyone around me—brilliant ideas, dynamic teachers, unconventional philosophies, caring mentors, independent theories, powerful community leaders. I witnessed parent-less children with violent histories and limiting disabilities rise above their circumstances. I watched education, nutrition and kindness transform minds, bodies and personalities. I nearly ate my own brain for breakfast, lunch and dinner.

But still there was no clear path to Africa. So, with some reservation, I eventually applied to join the U.S. Peace Corps.  I had not envisioned arriving overseas under a governmental umbrella or consumed by a preeminent development agenda, but at the time it seemed like the only feasible, affordable vehicle, and I was tired of waiting. I embarked on the long application process and eventually found myself on a rural desert floor in the place I had always wanted to know.

There are so many stories that find their first legs in April 2003, Lucas, and over time I will tell you some, but not all. At face value and in summary, my experience in Namibia was both fascinating and bewildering. We kept a quick pace in a slow motion environment. And, despite the death, disease, violence, alcoholism and despair that suffocated me and my sick village, we were required to stay focused on an incongruous mixture of predetermined development goals: teaching English, building libraries, procuring school computers and initiating new community projects. Call it a PTA. Then put a bird on it.

But during evenings and weekends I shirked my superhero cloak (think Captain America) and visited a local home where a woman named Marianne cradled 30 children in her arms, fed them, sheltered them, cared for them and found creative ways to enroll them in school. Despite her best efforts, so many of these kids were malnourished, bellies extended, eyes glazed over. Others suffered significant disabilities. Many were diagnosed positive with HIV.  She scooped them up from the street and some thrived. Others were unable to recover and died. Suddenly here, now gone.

Sunrise Project

My time in Namibia, followed by three months of solo travels across Southern Africa, was graced with myriad adventures and marked by tremendous self-discovery, but I eventually left with a heavy heart.  It turns out there were no answers there, Lucas, only more questions. Complex, enlightening, disturbing questions, which threw me into a tailspin for many years long after I returned to the United States, a place that now felt more foreign to me than anywhere else. To be honest, it still does most days.

It is my best wish that your other mother and I will set our sails for overseas travel in the near distant future. With luck and good planning, perhaps you’ll make your entrance into the world while we are abroad, and instantly you’ll be branded with dual citizenship, poised for a lifetime of adventure. Even when I am old and feeble, you will have my permission to stuff me in your backpack, jam your passports in your pocket, and hoist your own set of sails.

You’ll see it all, Lucas. We’ll see it all together.

to the road less traveled

245 Namib Dunes Shadow


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5. In Utero Bicycle Bandit

Dear Lucas,

Hubble took a photo of you today. And you’re lookin’ real good, as they say. Now please come down from the star nursery and spend some time with your parents.

10151566609947963

Don’t give me that look. We can be fun too.

ride on sweet one


Tagged: bicycle, child development, falling in love, Hubble knows, it's actually all about the bike, joy ride, Neil deGrasse Tyson knows, star nursery sonogram, you have two mothers you lucky duck

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6. 100 Trillion Cells = 1 Human Being

My Sweet Lucas,

Several nights last week I fell asleep with great effort, my guts knotted up with lingering grief, my brain congested with images and memories from the past. Each time I tried to close my eyes, I felt imaginary sepsis spreading to, gnawing on and consuming whole congregations of cells struggling to breath. Swaths of open space remained where neurons once transmitted, where my soul once rested. There were visions of a face melting, eye sockets empty of eyeballs. Nightmares before sleep.

nagasaki-boy

© Joe O’Donnell

The well of grief was stirred by accident and in response to a public image I saw one day while perusing the Internet. Taken in 1945, the photo captures the moment when a young child in Nagasaki stood at a cremation pyre, preparing to cremate his brother, who is strapped to his back.

From a historically contextual perspective, the portrait is magnificent in its ability to convey the story of two children—one alive, one dead—amid tens of thousands of innocent civilians who lost their lives to an atomic bomb. Almost seven decades later, the emotional gravity of this little boy’s plight can be felt, as can the horrors of violence and war.

From a humanistic perspective, the photo reminded me that participating in another person’s death, including the transfer of his or her physical body—a miraculous vessel containing 100 trillion cells—to a grave, crematorium or other interment space, is perhaps the most intimate experience a living person can ever know.

In response to that which can be so intimate, so bound by the finite and infinite at once, and so abundant in genuine emotion, our society works diligently to avoid it. Hospitals, churches, hospice teams, crematoriums and funeral homes provide systematic support to dying individuals and their families, some with great care, some with cold process, but all of them, to varying degrees, dilute the intimacy that is possible between those individuals who are most connected.

As you know well now, I was next to your grandmother when she died. We were alone together, just the two of us, and then I was alone with her body. Based on my earlier letter to you, it might sound like I would change this part if I could. But, in truth, I would not change one thing leading up to her last breath, expect that I wish she had not experienced suffering while dying, and I wish that I had not suffered in the experience of watching her suffer.

After your grandmother died, my regrets are more tangible. Most significantly, I wish I had not released her body to strangers, despite the laws that compelled me to do so, and despite how gentle and sincere their process. They tucked her stuffed bunny (which she called Teddy, when words were accessible) into the crook of her arm, wrapped her in her favorite orange afghan and then covered her in an Oregon wool blanket. I know these things because they told me. Moments earlier, they invited me to stand away from her room while they organized her. Because it was what I thought I was supposed to do, I agreed.

For many days to follow, strangers took Mum’s body from one place to another. And then, days later, at the edge of early morning, while the sun was still hidden, another stranger placed her body into the crematory. Now encased in a machine enclosed by four walls and a chimney, she melted and morphed from human cadaver to pile of ash. Suddenly here, now gone.

It didn’t occur to me completely until I came across the image of the young boy carrying his brother that I wish I had gathered my mother up after she died, strapped her still warm body to my back, carried her to our backyard and hoisted her upon a self-built pyre.

Of course Mum would have been too heavy for me and my crooked knee. Of course building a pyre in our backyard would have been illegal. Of course the natural environment would have become polluted. Perhaps the experience of participating in something so intimate, so uncommon, might have left me feeling more alone in the world than I already do. Still, if I could change one thing, I would have been right there when her 100 trillion cells, each composed of 100 trillion atoms, were released from their form.

And then, while her crazy spirit danced around us, I would have reached over and grabbed the hand of your other mom. I would have cried so freely. I would have exhaled so deeply.

Instead there are nightmares sometimes and deep caverns of grief and sadness that feign innocence one moment and calamity the next. There is sorting and sifting that still occurs, nine months later, and I find I have no choice but to be intimate with these feelings too. This is the terrible, wonderful exchange for loving another person so deeply.

I miss you, Lucas. We both miss you. This time in our lives is not bordered by white picket fences and it is not absent of pain or grief. Still we have stopped here, somewhere, waiting for you.

Please be on your way home soon. Be welcomed. Be loved.

you my heart


Tagged: 100 trillion cells of love, atomic warfare hurts, death and dying, existential meandering, maddening grief, pyres versus crematoriums

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7. Agent Scully, Step Aside

Dearest Lucas,

A good-looking Chicago girl has my manuscript in her virtual hands this morning—a children’s picture book that I imagine reading to you one day, even if I have to illustrate it myself (I don’t draw) and bind the pages together with yarn (I don’t knit).

Prior to pushing this story out into the world yesterday, I crafted a cover letter (I do know cheese) and then scoured the Internet for a literary agent. Your other mother was standing by, mixing up Sunday afternoon cocktails with bourbon, basil and fresh watermelon.

(Apparently she found the perfect watermelon at Trader Joe’s after tap tap tapping on several of them, an amusing process made more humorous by the gentleman who shimmied up behind her and said “knock knock” after every tap tap. (Unfortunately I missed all of this for the pleasure of basking in the dairy aisle. Did you know grass-fed cheese from New Zealand exists in Portland as a purchasable product? How exactly do you feed grass to cheese? And why?))

It didn’t take long for me to find The Agent. The black and white photo nestled amid her biographical narrative proved immediately seducing. She sported smart, fashionable spectacles, a black button-down shirt, sweeping dark hair, and then there was this look—an almost-smirk—that made my left eye go drowsy, as if it might wink.

According to the words wrapped around her photo, The Agent represents hilarious, warm-hearted picture books, and she has a special interest in “dystopian fiction for middle graders” and “sprawling, atmospheric tales with Dickensian twists and satisfying puzzles.” If The Agent wrote her own bio, I might be in love. Your other mother has already expressed concern.

Additionally, The Agent went to Amherst College and looks about my age. Perhaps she knew one of my good friends from high school, Nish the Fish. Perhaps The Agent rubbed shoulders with Nish, midway through a drunken evening celebrating a rugby victory. And The Agent will remember this because The Agent didn’t contract spinal meningitis. The Agent didn’t die. That only happened to Nish the Fish.

(I don’t see dead people, Lucas, but I miss them, long for them. So many of the most interesting ones had the shortest lives, died the most tragic deaths. Why do plain people live forever?)

With regard to the next great children’s picture book, The Adventures of Finn and Lynn—thematically speaking—is a comical adventure story about caring for the demented. Normally I would say this might not be the type of picture book that will cartwheel up the New York Times bestseller list, but then Alzheimer’s and dementia are quite popular these days. In fact, more than 5 million Americans are living with the disease. 1 in 3 seniors dies with Alzheimer’s or another dementia. And, in 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion. I was one of them.

(It all felt so significant at the time, but it turns out I was merely a speck in the sea of exhausted people, each reluctantly harboring a catatonic heart.)

So Lucas, I say hot potatoes. We have to assume this book is going to sell like smokin’ hot potatoes. Let us not be skeptics or doubters in this pursuit. Instead let us send sweet sentiment to the land of delicious deep dish pizza, my glorious birthplace, the city of wind. Let us assume success and great celebrity!

Bring it, Chicago girl, show us what you got.

Finn and Lynn

Lynn and Finn / © Rebecca Channer

P.S. If all else fails, your other mother can read you that book about crayons that go on strike. I can say with confidence that she is in love, sight unseen, with the agent who represented that story.

cheers


Tagged: Agent Scully girl crush, Alzheimer's, bourbon, caregiver, children's literature, how to find an agent, how to test a watermelon, picture books, Sunday afternoon cocktails, the demented are everywhere

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8. Crayons on Strike!

Dear Lucas,

Because I will probably never show you the letter I wrote yesterday, I found something else that will prove a better story, at least while you’re still tender in the heart regions. It’s called The Day the Crayons Quit and it cracks me up something serious. Who would have thought to write about and illustrate tiny wax pencils going on strike?

Your other mother, My Fancy Redhead (the big event is coming to Portland soon, so it’s time for capital letters), found it on the shelf of a sweet neighborhood bookstore and bought it on the spot.

She laughed so hard while reading about the gripes of the beige crayon that I thought she might start crying. I took her to the wine bar next door and even a glass of 2012 Monchiero Rosato from Piedmont failed to distract her from another reading. Falling in love with children’s books is what she does when she’s missing you.

Crayons on Strike!

Once we find her some agile swimmers and me some sanity, we’ll be all set. Until then, let me teach you a few things about labor unions.

star is born


Tagged: ask amanda, crayon complaints, falling in love, green beans are delicious, maddening grief, redheads have all the fun, super sperm please

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9. Unafraid of Everything, Finally

Dear Lucas,

I am not writing today for you. I am not writing today for your other mother. The experiences that make a person unafraid of everything are sometimes the scariest experiences while they are happening. It might be better if you both still imagine me afraid at times. Because to be afraid is to be human.

Seven months later, I am haunted by many things. None so broad and bearing as the moments immediately preceding her last breath. My mother. Your grandmother. Suddenly here, now gone.

As her best friend, she made me promise I would not prolong her life when the suffering was too much. As her full-time caregiver, I complied with her POLST. But I didn’t think the moment would look like it did.

A failing respiratory system is a desperate thing. The black box warnings on fancy pharmaceutical labels say it could be fatal. And it was. But there is little time to think on this while a living person is becoming dead. I did think on things, but not black boxes.

My first thought: she is in pain and I should fix it. My second thought: is she dying and am I supposed to fix that. Will she refuse to let herself die. Will I refuse to let her die. Should I do something, should I find a way to keep her here, against her own wishes.

Next: could someone please bring her morphine. Chocolate ice cream. Bourbon for me, thank you. Where is the cat. Is this hurting her. Why is she fighting. Of course she is fighting. Is this what dying looks like. This looks horrible. Where is everyone. Where is her stuffed bunny, should I tuck it under her arm. What makes a dying person feel safe.

I want to scoop her up in some way. But how do I hold her next to me when I am so scared. Right this second. I want to lie next to her. Now, this moment. Make yourself. I can’t. I know I will want this second back one day, a do-over. (And I do.)

She is so stubborn, so genetically prone to fight. You’re torturing me, I thought. I cannot bear to watch this. Feel this.

And I hoped she was dying. Our pain, as individuals and as a biological collective, had intensified to something akin to unbearable. Her brain was feeding on its own plaque. We looked like a Lifetime movie on Facebook, but our secret life at home was littered with paranoia, physical aggression, bewilderment and exhaustion. Almost daily we skinny dipped in her demented pool of early childhood memories. A torture chamber called regression. Alzheimer’s gone rabid.

As for me, my heart had simply collapsed. There was just so much sadness. So much loss. Yet she was right there still, close enough to throw butterflies at my eyelashes. It was a shell game that could drive you mad yourself. Where is my mother. Are you my mother. I reached out for support when I could, I tried to see the silver lines, but my heart went underwater anyway. Soaked through like a dirty old sponge, a now catatonic organ that had previously lived its life on fire.

I will let this happen. I can do it. I love you that much, Mum. I love you so much.

Early morning sun bounced from wall to wall. The orange paint of her bedroom glowed, giving color to a coat of skin turning to ash, her supine body turning to corpse. She seemed in a half sleep, bewildered, gasping. Now grunting. Maybe there were tears coming down my face, but I cannot remember because it does not matter.

And then her lungs begin to seize more completely. Capsizing like black box freight on a tiny canoe. The brain is responsible for everything, it is the part that reminds your lungs how to breathe.

I tell her I love her. What else is there to say. How can there be so much pressure on such a small grouping of moments. Should I remind her I am here. Will she know who I am. Suffocation is impossible to watch. How do I watch this. Can I stand outside the door. Can I go for a walk.

Tell her she’s safe. She has only wanted to feel safe. Her whole life. Since she was born from her mother’s belly. Before even. But for certain since she was little and everything was so unsafe so much of the time.

This was the wrong ending to over five decades of living. And eight years of war.

You’re safe, Mum. It’s me, I am here. Tell her to let go. But I don’t know where she’s going. She is clinging to the illusion of air, but the air is an ocean. Her lungs are emptying and it hurts. I love you, Mum. You were the greatest mom. Still no tears. None. Not even one. I think. I should tell her to let go. Will she listen to me. It’s okay to let go, Mum. You can let go. Please let go.

She claws at things. Her arms still strong, aged, but every elbow crease and finger knuckle look just like her still. I grab her hands and hold them tight together with my right hand. I press my left hand against her chest. Is that her heart. I want to touch her heart. I want to hold her heart in my palm. Look Mum, I have your heart in my hand.

Now I am certain this is happening. Now my role is certain.

I’ll be okay, Mum. I am strong. I can take it from here. Your son is strong. He found happiness. Because you believed in him. Because you taught him to believe in himself. We’re going to be okay. I will be okay.

It was a storm of clichés. Maybe they were lies. Maybe not. Maybe I am in fact okay. Maybe I feel the opposite of okay. I am learning these days that being unafraid of everything takes some getting used to.

Long spaces appeared between breaths, sounds so ugly they are tattooed on my eardrums.

And then it just stopped. Everything went quiet. I watched her. Like a hawk. I was sure she would come alive again. Because that’s what she does. She breathes. She lives. She takes care of me even when she forgets how. Even when she forgets who I am. Breathe, Mum. Please. Breathe.

She didn’t breathe again. Not even for one more second.

Now is the beginning of time without her.

But what is time.

In the year 1986, I was 12 years old and I broke my knee. As we waited for the ambulance, I asked my mom to get my hairbrush. My manufactured curls were suffering in the Midwestern humidity, and I wanted to look good for the paramedics. The pain had made me delirious. Numb. She thought me hysterical no doubt, but she complied. She even brought me a pocket mirror.

27 years later, sitting on my mother’s death bed, this memory came to mind. So I ran my fingers through her hair. I fixed her silver wings just right. Perhaps the pain was so excruciating that she did not feel a thing. She looked amazing regardless.

It is possible that I could have saved her life. Or at least I could have tried. Some days—more often I care to admit—I wish I would have. It is not a rational or logical thought. It would have been the cruelest thing to do. If I had saved her, she would still be here: demented, suffering, agonizing and bewildered by her own insanity. But here she would be. My best friend. My favorite person. My mom. Right there. Warm skin. Breathing lungs. Hello Mum.

How selfish it is to long for someone’s aliveness when she no longer wanted to be alive. And I suppose to be selfish is to be human.

I do not tell people this story. Because this is not how I imagined it happening. It was not romantic. Or beautiful. The person I loved most in the world did not die a good death. She did not die a peaceful death. And so I thought I should lie to you too. I thought I should convince you that I am still the same person. That I am still afraid of things. That I remain unchanged.

But the truth is every single cell is changed. I am unafraid of everything now, finally. Changed and unafraid. A perspective that is utterly intoxicating. Yet in its brightness, it is blinding me, even maddening me some days.

At least for now.

Fly Away Home

© Rebecca Channer


Tagged: 80s perms, Alzheimer's, broken knees, caregiving, death and dying, dementia, fly away home, letting go, maddening grief, unafraid of everything

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10. I See You, Seagull

Dear Lucas,

Your grandmother has taken the form of a seagull. This is not a surprise really, as Jonathan Livingston Seagull was one of our favorite books to read together. I suppose it might have been more interesting and boast-worthy if she had reincarnated as a hawk, eagle or even a penguin (my personal favorite winged one), but seagull as social scavenger of the sea makes perfect sense. Your other mother, who knows everything there is to know about power animals, agrees.

It was my birthday, January 10. I had been sleeping the past four nights in a studio room that was part of a large house on the Oregon coast. There was a sign in the tiny kitchen area that stated we were at 80 feet above sea level, which was exactly the height a tsunami wave might reach if an earthquake occurred. If you feel an earthquake, immediately head up the forest road. It won’t take long to reach a safe height.

I wondered what I would grab and run with under threat of tsunami. Should I jump in the car so I could carry more? I didn’t have much with me, but the items I did have were awkward and heavy: a biodegradable box encasing my mother’s ashes, two large moving boxes packed with old photo albums, some clothes in a red suitcase with broken wheels, and a growing bag of rocks plucked from the beach. And then there was the car itself, which presently was serving as my permanent home.

My hosts, discovered through AirBNB, were lovely. They were an older couple and the woman had lost her mother to Alzheimer’s several decades earlier. On day one, we shook hands and agreed we were members of an oddly special club. On day four, January 10, she handed me home-baked scones and a card. “Today,” she said, “I am going to celebrate your life while you grieve your mom’s death.”

I re-packed the car and threw my small black messenger bag in the front seat. It contained the essential items for both a tsunami escape and a death ritual: the box of ashes, my camera, my phone and a half bottle of wine. I re-parked the car a few blocks away at the lot overlooking Arcadia Beach and walked down the path of stairs made of sand.

It was just past noon and the beach was empty. Completely empty. Dark clouds stretched the expanse of the sky. The tide was high and crashed against masses of rocks that grew out of the ocean. The large formations reminded me of termite hills in the desert of Namibia, but these unique monoliths were formed of earth, infested with sea anemones and breathing oxygen-rich water. The wind was blowing fiercely and I couldn’t imagine how I would hurl ashes toward the ocean with any success. Surely they would blow back at me and a dust storm composed of organs, bone, blanket and teddy bear would cake my skin. I would inhale chenille. A bird’s nest of tendons and ligaments would form in my hair.

I studied the tide for 20 minutes. Consistently a small patch of rock formations were accessible when the tide rolled out, and they were tall enough that once surmounted, I would be able to stand on my wee island and let the sea crash around me. Aloft, I could dump the ashes low while the tide was in and then they would be carried out.

I looked up and down the beach. Still no one. I was relieved. I wanted to be alone right now, desperately, despite how risky my venture. It was then that I noticed a seagull perched on the side of the largest monolith. Immediately I wondered if it was my mother, and just as quickly I admonished myself for conjuring up such ridiculous things.

“Well hello, Mum,” I said skeptically. She just sat there, cocking her head in different directions, watching me watch her.

I looked at the sea again and thought of Pi Patel. A week prior, I saw the movie that had evolved from one of my favorite books. The visual storytelling moved me in different but just as compelling ways. I believed in Richard Parker and the meerkat island eight years ago when I read the novel in my tent alongside the Kunene River at the border of Angola. The recent movie only illustrated what I already believed. Yann Martel believed. Ang Lee believed. This wasn’t a fiction story to me, ever.

Life of PiAs I looked out at the Pacific Ocean and watched the violent, forceful waves of ice water crash against the rock and sand, I remembered Pi’s journey. How he, unlike me, did not have an option to turn back or give up because he was scared. Then I looked at the seagull again, still there, still watching me. Tears of laughter and knowing began falling from my eyes.

How could I believe in Pi’s amazing journey and not my own? How could I know for certain that an island of meerkats exists, but not expand my imagination to believe my mom had found new shape as a seagull?

It was then that I pulled the box from my bag. I opened the lid and grabbed the sack of ashes. There was a tie around the top, cinching the plastic shut. A metal tag was attached to the tie and on the tag were numbers. Mum’s numbers. I grabbed the camera and placed the strap around my neck. It was starting to rain. I watched the tide come in again and looked toward my island. The top was still untouched by water. The tide began to pull out and I started running through the pools of water, hopping from one rock to another until I was close enough to climb up to my safe haven. Once there, I looked over and smiled at my seagull friend. I did it. She nodded approval.

I looked back out at the sea and prepared myself for the incoming tide. It seemed even fiercer from my perch and as the roar of the next wave neared, fear spread through my body. I considered turning around and running back, but instead I planted my feet and centered myself.

To my surprise, the next swell was in fact much larger and suddenly I was knee-deep in a surge of rushing water, barely able to maintain my balance, certain I was about to be swept to sea. I squeezed my eyes shut and began to laugh hysterically. When I realized I was still standing, I furiously opened the bag, dug my fingers into the course gray ash and began throwing handfuls into the sea.

“I love you, Mum,” I screamed. “Thank you for making me this wild and crazy! Thank you for making me this strong.” The sky and sea raged around us.

It wasn’t poetry. The words were not planned or profound, but when I looked over at the seagull, she seemed impressed. Appreciated. I felt open. Free. Nothing else mattered except this very moment.

My socks, shoes and pants were soaked through, but I did not feel cold. I was invigorated, pulsating with the heat of exhaled emotions, warmed by a heart organ on fire. I turned and moved briskly to shore. I found my bag again and placed the remaining ashes back in the box—some would  go to the Rocky Mountains, some to the Grand Canyon, some to Ireland—and pulled out the bottle of wine. I turned back to face the sea and the gull who had now moved to the top of the rock formation. “Cheers Mum,” I said and held up the bottle.

As I made my way back to the bottom of the steps that would lead me to the parking lot, the sun began coming out. The cloud cover seemed black in contrast, but the sun had found a window and was pouring through. Everything around me suddenly held a startling beauty. The seagull looked out at the sea with me. She was lit up perfectly, her breast strong and proud, her beak lifted just slightly. I closed my eyes and began to sob uncontrollably. Somewhere deep from within, where the mother cells reside, the place where I have stored her love for me, and the place where I am storing my love for you. It was all too beautiful to look at, to feel. It was all so excruciatingly beautiful.

And then my phone rang. It was my favorite redhead—your other mother—calling from her Portland office to check on me. My best partner. My greatest love.  I answered and told her I was standing on the sand, looking out at the sea, and I had so many things to tell her. I cried and told her everything was going to be alright. I cried and told her I knew my mom was here with me and that I knew she was okay. I cried and cried until she started crying, and then we cried together. I promised her I would see her soon, and then I hung up.

I made my way back to the parking lot and turned around to look at the ocean one last time. Down below at quite a distance, I could see the seagull was still perched in the same place, looking my direction. Tears kept flowing down my cheeks. “You can go now, Mum. But I want you to stay near the ocean. It’s better here and I’ll be back to see you soon.”

And with that she flew away.

Arcadia Beach

© Rebecca Channer


Tagged: Alzheimer's, death and dying, dementia, Life of Pi, maddening grief, meerkat islands are real, nonfiction fiction, Oregon coast, Richard Parker rules

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11. Igby Slocumb Knew

Dear Lucas,

One day you will find it amusing and far from surprising to hear that I took the task of telling people about your grandmother’s death much too seriously. I am now doing the same with you. Delaying. Waiting for the right words to magically appear.

In my imaginary brain place, I wanted the phone calls to go like this:

“Hello, Robyn? It’s me, Lynn’s daughter Rebecca.”

“Becky?”

“Sure. So listen. Lynn’s dead.”

“What?”

“That’s right. Dead.”

“Oh.”

“Bye.”

[click]

In person would have been a bit trickier, but still doable:

“Hey you,” I would say.

“Oh, hey Beck.”

“So listen. My mom’s dead.”

“What?”

“That’s right. Dead.”

[silence]

“Want to grab a beer?”

The in-person scenario would be harder in some ways, but it would have ended with free beer. Free beer is good. I haven’t paid for a drink in almost seven weeks and I could have said a lot less.

So that’s it, Lucas. She’s dead. Your grandmother. My mother. You will never meet her. Do you hear me? You will never meet her.

One day I will paint several different portraits of the many different people who inhabited Mum, but the only one who really mattered to me–the mom I will always remember and always miss–is the less demented woman of steel who made me feel safe in the world. I notice myself reaching back to grab her hand still, every day.

10

I will be a motherless mother when you arrive, Lucas, but I will do my best to make you feel safe in the world too. I will not lie about how dangerous and unpredictable and scary the world can be. I will not crowd you either. I will not hover over you or attempt (too much) to control your moves. Still, when you reach back to grab my hand, in person or in spirit, it will be there. Always and forever.attached already me

 


Tagged: Alzheimer's, conversational skills, death and dying, dementia, how to get free beer, how to talk to children, Igby Goes Down, maddening grief

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12. Motherless Madness

 

 

LITTLE TALKS

I don’t like walking around this old and empty house

So hold my hand, I’ll walk with you, my dear

The stairs creak as you sleep, it’s keeping me awake
It’s the house telling you to close your eyes

Some days I can’t even trust myself
It’s killing me to see you this way

‘Cause though the truth may vary
This ship will carry our bodies safe to shore

There’s an old voice in my head that’s holding me back
Well tell her that I miss our little talks
Soon it will be over and buried with our past
We used to play outside when we were young
And full of life and full of love.

Some days I don’t know if I am wrong or right
Your mind is playing tricks on you, my dear

‘Cause though the truth may vary
This ship will carry our bodies safe to shore

Don’t listen to a word I say
The screams all sound the same

Though the truth may vary
This ship will carry our bodies safe to shore

You’re gone, gone, gone away
I watched you disappear
All that’s left is the ghost of you.
Now we’re torn, torn, torn apart,
There’s nothing we can do
Just let me go we’ll meet again soon
Now wait, wait, wait for me
Please hang around
I’ll see you when I fall asleep

Don’t listen to a word I say
The screams all sound the same
Though the truth may vary
This ship will carry our bodies safe to shore

Don’t listen to a word I say
The screams all sound the same

Though the truth may vary
This ship will carry our bodies safe to shore

©  Of Monsters and Men


Tagged: death and dying, dementia, dragons, little talks, maddening grief, men, monsters, mother lode

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13. The Orphaned Bumble-ardy

Dear Lucas,

Two months and two days have passed since my last letter to you. 63 days of swallowing a story that unfolded, is still unfolding. A story with so many layers. A story embedded in so many other stories.

Today I see clearly that there are benefits to your current existence as an embryonic star. You are frolicking in a nursery encased by a dark globule that can only be witnessed with the smartest telescope in existence. Your soul and spirit are presently unattached to a brain, which is unattached to the pull of the earth’s gravity, which is where the multidimensional pain associated with being human is contained.

I am told intense pain must be felt, assuming one wishes to stay sane. However, people who have recovered from incidences of feeling deep pain forget that deep pain often feels like insanity itself, which can deter a person from jumping in all hog-wild. Naturally the advice is still very valid, but also quite scary.

If I could teleport myself to the edge of your nursery through psychokinesis today, I most certainly would. Telekinesis is surely a better use of the energy percolating in (and occasionally electrocuting) my brain right now. It would be good to see you. I would stay on the fringe, just close enough to check you out, near enough to see how you’re shaping up. I imagine you swimming in a pool of bright red star dust. I bet you are wildly handsome.

If I could teleport myself back to December 13, 2012, and magically (in a fancy premonition sort of way) place things within my physical awareness that might make the following day easier to digest, I would do this too. The first would be a full bottle of Basil Hayden’s small batch bourbon. The second would be a link and an instinct to press play on this author’s interview:

This Pig Wants to Party: Maurice Sendak’s Latest

© Maurice Sendak

We’ll need to ease into the next part of the story, if you’re willing. My heart, still, is an organ of fire.

i love you


Tagged: caregiving, maddening grief, maurice sendak, organ of fire, psychokinesis, small batch bourbon, star dust, telekinesis, terry gross, where the wild things are

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14. Special Topics in Neurocalamity

Dear Lucas,

The words, every single one them, are tangled up in my teeth plaque. This could prove unfortunate when next I am doing a headstand and the plaque decides to dislodge and float up into my brain. Then, brain plaque. Then, dementia. This seems so much more probable than inheriting Alzheimer’s through some sort of random genetic transfer.

Last week it was your grandmother’s 64th birthday. Tonight it’s Thanksgiving: the birth day of an L-tryptophan-rich fairy tale. I am lying here on the couch in front of the fireplace digesting turkey imported from Southeast Portland. I am searching for something to say to you.

Or maybe I am just biding time until her door opens. 11:13pm. 12:48am. 2:31am. And then just awake until 6:37am. Then asleep. 9:20am. Awake. Alright everybody, let’s roll out this day.

It’s only 10:38pm. I am listening to Florence + The Machine and watching moving pictures. I thought I would edit and upload this video in particular just for you. In the end, there was nothing to actually edit. Every second matters. My gut is swollen from so much laughing, my tear ducts from crying, my throat from screaming, my heart from aching.

The months are passing and she is dying, Lucas. We are all dying, but I am watching this death closely and it is moving at a steady pace now. The brain first, then the body. A body cannot function without the brain.

Your incoming path seems less steady, less known right now. But we are rooting for you, Lucas, more than you might ever know. Still, I am afraid you are going to miss her. In so many ways she is missing already.

Perhaps, if you try, you can find her here, somewhere, waiting for you.

good night my sweet


Tagged: agave, Alzheimer's, caregiver, dementia, Flouride cures dementia, neurocalamity, neuroscience, plaque, Thanksgiving

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15. Pedi-cab as PRN (Latin: pro re nata)

Dear Lucas,

Lance Armstrong once wrote a book called It’s Not About the Bike. He was wrong (about many things). It is all about the bike.

Riding a bicycle has, in fact, saved my life on many occasions: a white Schwinn 10-speed offered distraction from my parents’ divorce over 25 years ago; a red Trek mountain bike was complicit in my escape from three different universities over a four-year period; and two Bianchi road bikes, both stolen from my possession at different times, kept me afloat when I returned from the Peace Corps, wholly unable to reconcile urban America with my experience in rural Africa.

And now, it is a pedi-cab, or bike taxi, that helps me cope with the madness of caring for a loved one with Alzheimer’s.

Click to view slideshow.

The rickety, three-wheeled chariot now in my possession is branded with an I HEART ST. JOHNS bumper sticker. Appropriately, it first appeared while I was living in the North Portland neighborhood over a year ago. Your mother and I had just rented a home in this eclectic pocket so we could live near your grandmother’s new memory care residence. Only a giant park sprinkled with massive, ancient trees separated our two plots.

Sometimes, though rarely, I would walk across the park on my way to visit Mum and pause to play a solo round of disc golf. At the time, I was the CEO of an international development organization and it felt liberating to wander along the course trailing behind hipsters who were carrying backpacks full of small frisbees and PBR tall boys, the air thick with humidity and marijuana smoke. The contrast to my earlier daytime activities and upcoming evening activities was utterly intoxicating.

Imported in a box from Korea (if I recall correctly) and assembled by her brother and a friend, Babs–one of Portland’s finest community members, if not icons, a woman full of spark, brimming with love, and lucky to share the same nickname as Barbra Streisand–was peddling furiously through an intersection where I was stopped in my car. In the carriage was Babs’ sweet, elderly mother. Donning a sunhat and holding onto her oxygen tank for dear life, Babs’ mom struggled to stay upright while they bounced over cracked pavement and potholes at breakneck speeds. My lady, who was in the car too, and I began laughing hysterically.

Not too long after we saw them, Babs’ mum passed away. Like mother, like daughter, her spirit was vibrant, magnetic. As mother and daughter, I believe they shared great love. Still today, tears will fall and then gather in the corners of Babs’ smiling lips when she talks about her mom.

Earlier this summer, Babs graciously offered to lend me the pedi-cab. My mother may never enjoy riding in the carriage as much as Babs’ mum, which you might gather from our photos. I think this is because the world is so confusing to her now. She knows I have her here, right here, safe in the crook of my arm, but that’s all she knows. When she forgets this too, I start scouring our neighborhood streets for my stolen, two-wheeled cycle again. Because it has always been a bike that saved my life.

Your car seat will more often be attached to my handlebars, little Lucas. This you can count on.

ride on sweet one


Tagged: Alzheimer's, babs, bicycle, bike taxi, caregiver, caregiving, crazy grandmother, dementia, letters, love, mother lode, pedi-cab pleasure, screw you lance armstrong it is about the bike

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16. Astrophysicists Know Everything

Dear Lucas,

I have been too angry to write during the past few weeks. Anger is not a useful emotion, although sometimes it can trigger deliberate action, which I believe in wholeheartedly.

What’s eating me up, you say? Well, my mother–your grandmother–still has younger onset Alzheimer’s disease. A tired subject, but no less frustrating. Also, my sweet road bike was recently stolen by juvenile, baseball-throwing bandits, leaving me with slow-dissolving bruises and a pedi-cab made for small Korean men. Seriously? Yes, seriously. Now the 2012 presidential election is nearing and it’s a close race, which is baffling me beyond my normal capacity for bafflement.

You’re too unborn to know what’s happening in our country right now, Lucas, but it has everything to do with your future. And because so many people write better than I do, I will leave you with this sentiment, authored by Doug Wright, an award-winning playwright:

“I wish my moderate Republican friends would simply be honest. They all say they’re voting for Romney because of his economic policies (tenuous and ill-formed as they are), and that they disagree with him on gay rights. Fine. Then look me in the eye, speak with a level clear voice, and say, ‘My taxes and take-home pay mean more than your fundamental civil rights, the sanctity of your marriage, your right to visit an ailing spouse in the hospital, your dignity as a citizen of this country, your healthcare, your right to inherit, the mental welfare and emotional well-being of your youth, and your very personhood.’ It’s like voting for George Wallace during the Civil Rights movements, and apologizing for his racism. You’re still complicit. You’re still perpetuating anti-gay legislation and cultural homophobia. You don’t get to walk away clean, because you say you ‘disagree’ with your candidate on these issues.”

I love you, Lucas, and I am working hard for you today.
Harder than you know.cynical yet hopeful


Tagged: Alzheimer's, caregiver, caregiving, defend equality, fight discrimination, gay rights, love unites, neuroscience, politics, you have two mothers you lucky duck

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17. Spidey Sense vs. Fine Wine

Dear Lucas,

You’re going to love Spiderman, young Kennedy. It will be part of your genetic makeup as a living, breathing American boy to lust after muscular, well-dressed superheros who have superpowers. The webbed one is part of this package, so you will want him too. Even if you are gay or transgender or a girl. Trust me on this one.

© Mike Joos

Personally I have a love/hate relationship with Spidey. First off, his logo is lame. It’s a spider for crying out loud, which is far more icky than it is scary. He does have a cool suit, of course, and his web shooters are, well, fancy. Finally, I am willing to admit that an agile man who isn’t afraid of attachment is a pretty prize.

But I ask you, Lucas, where was Spiderman when my mum’s brain was attacked by disease? Blame the superheroes; so cliché, I know. Seriously though, Spidey, why don’t you kick some plaque ass for me? Get out your damn web guns and untangle this mess.

Most days I no longer miss the mom I knew. Most days I no longer miss her knowing me. She did know me, Lucas. Sometimes just by the sound of air moving between my lungs and the world and back again. I was her sound machine once, many decades ago, when I would lie on her chest asleep, rising and falling while her own lungs inhaled and exhaled. Two bodies that were once one, learning to live independently.

But then something happens. Something that is distinctly not a part of our slow-moving routine. Something that is either really good or, in this case, really bad. It is these moments when I am suddenly overwhelmed by how much I miss her. She’s right there, Lucas, but I cannot reach her. I cannot tell her what happened. I cannot crawl into her lap and ask her to protect me. I cannot fold myself into the crook of her arm and cry. Or perhaps I can, but not without confusing her, upsetting her and potentially sending her into an emotional, paranoid and delusional tailspin. This is my job now: to protect her. Her “spidey sense” evaporated long ago and it is not coming back. I f**king miss her so much.

It was a baseball that interrupted the perfect Saturday night summer air as it landed in the pocket of my left shoulder blade. I did not remember this part until this morning, several days later, despite the deep bruise that surfaces more with each passing day. It took my breath away, along with any ability to understand the actual event in the actual moment. Adrenalin and hormones flooded in, and I was instantly bewildered.

My own “spidey sense” was admittedly corked that night. Too many delicious glasses of fine wine turned me into a French version of Mary Poppins as I coasted out of the parking lot on my bicycle and began the short trek home. Your mother was waiting for me, impatiently perhaps. She had kindly agreed to wrangle your grandmother that night, so I could get out and spend time with my best friend. It was a night off from caregiving. I covet carefree time constantly.

“Bon nuit, mes amis!” I sang as I cruised past a group of young men circling under the street lamp. I nodded at them, smiled, my eyes twinkling behind rose-colored glasses. At the same time, they were placing an imaginary catcher’s glove on my back and waiting for me to turn the corner onto a darker street. It happened so fast. Suddenly I was on the pavement and then they had my bike and then they were gone.

In reviewing the blue and purple map trailing up and down the right side of my body, I know my right foot got caught in the pedal clip and twisted. The steel frame of my bike–my sweet bike–fell on top of me, rupturing tiny pools of blood vessels along my calf, knee and groin. My ankle and elbow, despite their cotton coverings, opened up and shed blood. My head, wrapped in polystyrene foam, survived without injury, but my neck absorbed the whiplash.

“We’re stealing your bike,” one boy responded when I inquired about their plans. I appreciated his matter of fact tone; he seemed both surprised and amused by the question. I continue to replay this exchange in my head. If I had not been so stunned, I would have said thank you for being so honest. Little punk.

The thing is, Lucas, I am not small. I brought you grandmother home in April, on tax day in fact, and I proceeded to gain thirty pounds. I like to think I carry it well, except that I refuse to buy larger clothes. As a result, my love handles look more like the pair of grab bar hand rails I need to install in your grandmother’s shower. Those young men under the street lamp should have been scared off by my length and girth, but then there were five of them and just one of me.

This is when it hurts, Lucas. This is when I miss her. At 7:00am, just nine hours later, I was out of bed and downstairs captaining our morning routine: food, pills, water. I helped her use the bathroom. Everything in my body hurt, but I was there to soothe her, to hug her without wincing, to tuck her shivering body back under the covers. Please sleep awhile longer, I pleaded silently.

I sat in her rocking chair while she closed her eyes again. The store-bought sound machine was on. An ebbing tide, like when I was little and there was a sailboat and a lake and two parents who said they loved each other and would keep me safe. Suddenly tears began leaking from my eyes. It’s going to be okay, tiny me. I got you.

It was just one night. One moment. One difficult interaction with strangers. One bike. One loss. One string in my heart that got pulled. That’s all. But it reminded me that superheroes are imaginary, same as are you right now. When you do arrive, Lucas, I will be here to protect you, and I will know you by the sound and cadence of your breathing, in and out, in and out. you my heart


Tagged: Alzheimer's, bicycle, caregiver, caregiving, dementia, imaginary friends, letters, spiderman, spidey sense, superhero, watch out for thieves

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18. Wound Debridement

Dear Lucas,

This morning the pressure eased some. The September air was quiet, but not silent, as muffled voices drifted from your grandmother’s open window below into my window above. First Cher belting out the last lines of “Strong Enough.” Then Mum hooting and hollering, “Hot damn!”

My fancy redhead–your sweet mother–was lying next to me. She was recovering from the stomach flu or some other gastronomical demon. She looked perfect, beautiful. I closed my eyes and breathed, finally. It was a terrible week and I was certain I had lost her.

“If people judged this situation by your Facebook page, they would think taking care of a parent with late stage Alzheimer’s at home was a piece of cake,” she whispered.

I sighed. ”It is a piece of cake. The perfect piece of chocolate cake, in fact, only with tiny, squirming maggots eating away at the moist part in the center. Silly maggots who don’t even care about chocolate, they just want to eat, eat, eat until everything is gone except the rough, leathery rind of a single cocoa bean.”

“I missed you,” she said, smiling, and drifted back to sleep.

and i miss you


Tagged: Alzheimer's, caregiver, caregiving, Cher, chocolate cake, dementia, Facebook, gastronomy, love, maggot, mother lode, redheads have all the fun

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19. Telemiscommunications

Oh Lucas,

I am losing faith in everything. The body, the brain, the heart, the soul. They are not playing nice this week.

Sometimes only music can calm me down.

(Artist: Deadmau5 feat. Imogen Heap) Song lyrics

It’s not likely your newborn life will be filled with normal nursery rhymes.

Where are you? I can hardly hear you.

i love you


Tagged: deadmau5, existential meandering, imogen heap, music, newborn, nursery rhyme, telecommunication, telemiscommunications

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20. Barbra Streisand and Butterfly Needles

Dear Lucas,

Your grandmother is a champion, except when it comes to her monthly blood draw at the clinic. I have scrubbed blood out of her pants and I have washed her mouth out with soap. I have soothed the bruised egos of doctors and phlebotomists. I have promised Mum again and again that this is the last time. (Alzheimer’s has turned me into a chronic liar.)

Because I was born under the zodiac sign Capricorn and therefore find contentment in controlling all things, this month I requested a nurse come to our house and bring a butterfly needle, which might make capturing and puncturing one of Mum’s tiny veins easier.

“Send someone who can bring her A game,” I said.

An hour later, a man named Wade showed up at the door and I panicked. Your grandmother has become less and less interested in the male species over the past several decades, with the exception of those individuals who might make me a good husband.

Given Wade exuded sweetness instantly and was sufficiently handsome, I let him in, but his blue scrubs put Mum on immediate alert.

“Hold tight,” I said and quickly pressed play on the DVD player. Barbra Streisand, in all her glory, filled the room. Performing live at the MGM Grand on New Year’s Eve in 1993, Babs wore a thrilling, empire-waisted, split-up-the middle dress. Michael Jackson was in the audience and looked equally fantastic. Mike Myers, donning a sequined gown and the persona of Linda Richman from SNL, stood up in the second act and screamed across the sea of guests: “Barbra, you sing like buttah!”

The crowd goes wild and so do we, every time.

With Babs belting out “Happy Days Are Here Again,” Wade accomplished the most seamless, painless, single-poke blood draw my mother has ever experienced.  The energy in the room was palpable: Wade was smiling, Mum was laughing and I was swaying to and fro with my eyes closed.

“Done!” exclaimed Wade and pulled the needle and tube from her arm. Mum and I slapped a high-five.

“Let’s all thank Ms. Streisand for providing inspiration,” I said.

It was then that I heard Wade mutter under his breath, “This is a first.”

If DVD players are still in use when you arrive and turn six, Lucas, we will watch this concert together. I imagine you, like me, will learn to love it as much as you hate it. Unless of course you are gay, which means you won’t just love it, you will worship it. (The gay man’s code requires unwavering adoration of Babs, so I have been told.)

star is born


Tagged: a star is born, Alzheimer's, babs, Barbra Streisand, Capricorn, caregiver, caregiving, dementia, go gay, letters, love, newborn advice

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21. Bicycle Thief

Dear Lucas,

Tonight I stole your mother’s bike and took it for a joy ride. It is parked outside my front door without a lock. I told her to be careful of potential thieves. But she doesn’t believe in thieves.

She left by car to go home to her home, 66 blocks east, this evening. Shortly thereafter I put Mum to bed. Then I slipped on your grandmother’s flip-flops and hit the streets. Cycling in the summer air at night is the best feeling. I circled round our block, again and again. I am Mum’s caregiver. I am on duty. I will stay in range.

You and I are going to cycle at night often. We will build you a seat on the front of my handlebars. We will mount a vintage boom box on the rear rack and play Maxence Cyrin’s “Where Is My Mind?” You will always wear a helmet, always. So will I.

I promise you the warm air against your face will feel like happiness. Just like that, simply, happiness.

with love


Tagged: Alzheimer's, bicycle, caregiver, caregiving, child development, crazy grandmother, dementia, imaginary friends, joy ride, letters, maxence cyrin, screw you lance armstrong it is about the bike, watch out for thieves

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22. 66 Blocks East

Dear Lucas Ulysses Coltrane Kennedy,

I love a good acronym. So when your full name branded itself in my brain over a year ago, I was not surprised by its acronymic qualities. Like most moments that matter, this memory feels like yesterday and also many years ago.

I was listening to Nina Simone in my old apartment and I spontaneously wrote your name on a tiny piece of paper. I then taped it to the edge of my bookshelf and your mother laughed. We had been dating less than a year, so I imagine she thought I must be kidding. Now, of course, she knows me better.

If your mother ever gets bored with my shenanigans and decides to leave me, I will search for a lover with the last name Kale, just to spite her. But without her there will be no you, so what will be the point? She will be gone, you will be invisible (still), and I will be stuck with someone named Kale. Tom foolery.

It is possible that tonight is the worst night. The tears have been leaking from my eyes for many hours now. Tears that are coming up from a tight place in my chest crate: the storage center for one million feelings. There are no words to describe these emotions, so they just spill forth as rushing water, silently terrorizing the butterflies that were balancing on my eyelashes. Soluble wing paint bleeds into a gorgeous swirl of color and then just gray. So much gray.

Tonight I rode my bicycle 66 blocks east to see her: the person who possesses the belly in which I hope you will grow one day. My sweet love, my great love, the most fascinating person with whom I have ever shared a home, a bed, my heart.

But yesterday she left our bed and moved to a new home. We call it our second home to make ourselves feel better. Our cabin in the woods. But really it is just a quiet space a few miles that way. A place free from a demented old lady and her weary daughter, both of whom have become sleep-deprived zombies.  We need her to sleep, Lucas, so she can go to work and succeed at that work. She holds the pot of gold that enables us to do what we are doing.

What are we doing?

I stood in her new doorway while she held her fingers against my cheek. My tears ran over her skin, pooling in the delicate crevices and curling into her cuticles. Here she is, Lucas, just down the street. Just right there. I can almost see her rooftop from my rooftop. Maybe we can survive this.

(I told her to go. I told her it was okay to go. I told her I wasn’t letting go. Even though she was going.)

Now I am home again, after cycling 66 blocks west. The agency relief caregiver has been relieved. Your grandmother sleeps beneath me, just one flight down. My brain faces north, hers west. Our bodies are crossing, but held apart by lumber, carpet, a box spring and a mattress. She is yearning for death and I am aching for life. Somewhere above us both, nestled deep in the universe, wrapped up in a star nursery, I imagine you.

There is a bedtime story about where you live right now. It tells the tale of enriched guts that are scattered across the universe and hold the ingredients for life. Tonight they are holding you.

good night my sweet


Tagged: Alzheimer's, bedtime stories, crazy grandmother, dementia, falling in love, kale is yucky, Lucas is Lucky, Neil deGrasse Tyson knows, Nina Simone knows, zombies are us

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23. Everyone Poops

Dear Lucas,

The ol’ lady doesn’t sleep anymore. F**k Alzheimer’s, as they say.

Tonight, like most nights now, the motion detector alarm in the hallway went off when she opened her bedroom door. This time I descended the flight of stairs and found her wandering aimlessly in the living room. Mum is fast like that. She was sporting pajamas and black loafers that didn’t match. The shoes were also on the wrong feet. She had a third black shoe in her hand. It was 1:45am.

“Oh, you’re here!” she said, as if I had just stepped off a plane from a week long vacation. (There are strange aches in strange places of my body when I write words like vacation. As an upstanding, middle class American, I am culturally compelled to feel entitled to many things in life, including the right to blog, the right to maintain serious opinions about the plight of poor people in Africa, and the right to take vacations annually, if not semi-annually.)

Mum pulled me to her and patted me on the back with her third shoe. “Good, good. I’m so happy,” she whispered in my ear and then chuckled. She was suddenly cognizant of her own shoe dilemma.

There are times when your grandmother is aware she has dementia, like tonight. Sometimes these lucid moments make her howl with laughter. Sometimes they make her scream with desperation. Fortunately the latest cocktail of pharmaceuticals has her howling more and screaming less, which I appreciate sincerely.

“Let’s go to the potty, hotty,” I said, kissing her on the cheek and then releasing myself from her embrace. We took the few steps to her bathroom and then I removed the shoe from her hand and gently pulled down her pajama bottoms.

“Sit,” I said, but my command did not compute in her tangled brain. So, I placed one hand on her left shoulder and the other near the small of her back, and then I pressed lightly until 38 years of neurobiological attachment sparked enough trust that she leaned back and positioned her butt cheeks on the toilet. It was like a trust fall, but potty style.

“Your sweet ass is sparkling now, lady,” I said and then tossed the soiled wipes into the trash.

I am counting on you and I having our own toilet time together, Lucky. Given how advanced you will be, this will occur well before you are two years old. However, in your case you will be growing more independent, so the experience will surely feel be empowering not humiliating. You will feel strong and capable instead of dependent and vulnerable.

And then one day you will realize that the choice to be vulnerable–no matter your age–will make you stronger than you could possibly imagine. An attached heart is an organ of fire.

attached already me


Tagged: Alzheimer's, attachment disorder, caregiver, caregiving, child development, dementia, letters, neurobiology, neuroscience, newborn advice, potty training, spicy hot organs, toileting, wandering

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24. Some Pay Big Money

Dear Lucas,

This morning my bedhead was the impetus for wild laughter. I do not remember the last time I heard your grandmother laugh that hard. It was beyond a cackle, even a bellow. It was a guffaw: the kind of belly eruption that comes from the gut and cannot be mistaken for anything other than authentic laughter. What an amazing sound, and it was cascading from this mouth that looks just like mine, from this belly where I was formed 38 years ago.

During this moment of wild, early morning laughter I felt lucky. And because I think of you all of the time, I thought of you. Why can’t you be here, right now, right this moment, to hear one of the sweetest sounds I have ever heard in my lifetime? If you ever fall in love with your own mothers this way, you will be lucky. Cursed, but lucky.

P.S. I expect that the moment you arrive into the world, you will guffaw wildly. See you then.

with love


Tagged: Alzheimer's, bedhead, caregiver, caregiving, crazy grandmother, dementia, falling in love, letters, newborn advice

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25. Dragon’s Breath

Dear Lucas,

I have been writing letters to you for weeks now. Etched in gold plaques that are likely growing in my own brain, these epic prologues spend most of their days marinating in skull juice and rye whiskey. Only today are they finally somersaulting out to fill a tiny portion of the white space that surrounds me. You should know I think about you all of the time. All of the cells that make up my being miss you.

Your other mother–the love of my life–also misses you. She is, in fact, exhausted by everything these days, including me. It seems there is a swirl of chaos that has engulfed me and therefore us, since we met over two years ago. If you look closely you can see it: a sweet, suffocating plume of gray smoke that sneaks steadily from my nostrils with every exhale.

I will write a storybook for you about it all one day. I will call it The Devil’s Dragon Smokes Cloves. 

me


Tagged: Alzheimer's, bourbon, brain matters, caregiver, caregiving, dementia, dragons, existential meandering, you have two mothers you lucky duck

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