When I Was Dreaming

I don't dream often, or I don't remember them. A common theme in the dreams I do remember is frustration. Making out with someone while being constantly interrupted, or trying to run and feeling like I am stuck in slow motion. So, I'm ok with my dream amnesia. In fact, I'm wishing for it more and more these days.
A few weeks ago I had a dream that continued even after I woke up and went back to sleep. I know somewhere in my head this serves a purpose, but to my conscious mind it is torture. I dreamt that you all lied to me, every one of you. My mom showed up very much alive. I couldn't even spare a moment of relief as the wound of betrayal opened and my body filled with rage. It was like she wasn't even there, all I could feel was anger. I proceeded to kick and punch each of you in turn, but my punches were lame and weak. I'd wind up and swing with all my might only to feel my arm travel through air the consistency of jelly. I was completely unable to revenge this terrible pain you had all caused by lying to me. All of this and she was just there, watching, silent. When I finally woke up for good I was left feeling only disappointment. I was so mad at myself for not spending those precious dreaming moments hugging her. Even a few seconds spent dreaming up that embrace, that relief, would be heaven, but instead I was violent and impotent. It's left a lasting scar inside me. I go to sleep with apprehension, I dread waking to another impossible regret.
This morning I had a series of shitty dreams between presses of the snooze button. If mom shows up I am always inclined to try to fall back into the dream, even though the dreams are never pleasant. This was no different. This wasn't nearly as vivid as the previous nightmare, but it followed me through this day anyway. Traveling somewhere with sick mom. Facing impossible delays that threaten her comfort and health. Loud crackling noises keep her from sleeping while we are delayed in what I think was an airport control tower. Some sort of storm blows buildings over and eventually blows the tower over. I woke up shortly after picking my mom up while running Wile E. Coyote style down the walls as the tower crumbled. Only there was nothing in my arms when I looked back down.
See, shitty frustrating dreams. I'm never fast or strong enough to affect real changes to these dreamscapes. Hopeless even just in my own head.
In general though, I'm feeling closer to normal. It's easier to get out of bed and I enjoy getting out more even though I have to put on pants.

1

I wept a strange potpourri of emotions after you’d drifted off. There in that bed was the most profound and painful gift of my life. I felt so grateful for you and what you meant to me. 

She was no longer wrestling with the grief, but could sit down with it as a lasting companion and make it a sharer in her thoughts. ~ George Eliot

A year. 1/31st of my life already passed without you. 365 days of past tenses. A thousand heartbreaks, one for each time I had to refer to you as an abstraction… a used to be… a no longer… a forever gone…..

Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

Watching someone die changes you. Everything about living becomes exaggerated, pronounced and strangely surreal. All of the functions that keep the human body moving, even ones that are automatic, become very obvious. I remember spending the evening after you died on my side wondering how I would ever get up again. How could I possibly just go on living? How were my lungs still filtering oxygen? How was my stomach still hungry? How was my brain still racing? All sensations were new and foreign. The feeling of my tongue on the roof on my mouth, the sheets against my skin, the heat of tears on my face… the livingness of my body and mind was all so new and intense.

If you're going through hell, keep going. ~ Winston Churchill

The truth is grief comes in massive waves … almost instantly ….without consideration or apology and between the agony of the inevitable return of active grief and moments of calm, I sometimes feel a panicked rush ... the horrific feeling that I need to race to do something else for you. Oh ... how my heart wants to.... I yearn to save you from being dead (or, rather, to save me from you being dead). My mind understands what happened and why. But my heart sometimes desperately searches for a way out … some other reality.

We can endure much more than we think we can; all human experience testifies to that. All we need to do is learn not to be afraid of pain. Grit your teeth and let it hurt. Don't deny it, don't be overwhelmed by it. It will not last forever. One day, the pain will be gone and you will still be there. - Harold Kushner 

While navigating the never-ending labyrinth of pain and sorrow I often think about finding joy … and I want believe it is possible, even now. I want to believe that there are tender mercies all around us, every day. I try to wring every drop of joy out of the tiny places I manage to find it. For a lot of this year (and the year before it) I felt like I was hiding my grief behind a wall of fake strength, like I was wearing a fake face that projected the image of the person I used to be. I’ve tried to imagine myself wearing my grief out in public, spending time with friends in quiet contemplation, crying on the shoulders of my dear ones …but that’s simply not me. I know everyone around me would accept and occupy this place of sadness with me, but I’d honestly rather spend my time with them finding the next punch line, then next joy. I’m not hiding, or faking it …I’m choosing to be happy in the moment because I know, like everything else, it’s temporary and fleeting and I try to carry that knowledge into the dark hours when life is quiet and the heartbreak settles in. When my face is all scrunched up and my lungs wracked with sobs I do my best to remember that this bout of despondency is temporary too, and in a little while I will get up and find another distraction, another salvation, maybe even another tiny joy.

“I measure every grief I meet with narrow, probing eyes - I wonder if it weighs like mine - or has an easier size.”
~ Emily Dickinson

I had dinner with friends a few days after you died and I felt awkward and more isolated than I ever have before or since. No one else on earth lost you the way I just had. There is not a single soul who can wholly understand. I was and am a singularity in this world. I am completely alone and uniquely forlorn. Lots of people lost you. Lots of people lose their moms, but I am the only daughter who lost my only mom. I don’t mean to be all emo about it. I’m not saying my grief is bigger or more special than anyone else’s, but this particular sad belongs to only me. But…..

“Ah. I smiled. I'm not really here to keep you from freaking out. I'm here to be with you while you freak out, or grieve or laugh or suffer or sing. It is a ministry of presence. It is showing up with a loving heart.”― Kate Braestrup

I’ve had a lot of time for contemplation. I’ve thought a lot about the friends (and family) who didn’t show up to the grief party. Some surprised me, others not so much, but I’ve left my disappointment behind. If you are reading this and thinking to yourself that you should have shown up, feeling shitty for your absence… don’t. I understand. I know my pain is an uncomfortable reminder of your own vulnerability. I know my grief is an unpleasant preview of the grief you will all suffer someday or an unwanted reminder of some horror you have experienced. I know I have also been absent when I should have been present. I know how much it hurts to watch someone you love grapple with so much pain. I know it is maddening to not know what to say, to have NOTHING to say because there is nothing in this world to cure that hurt. On the other end there are the friends who showed up more than I could have asked for, friends who overcame their own discomfort and came to sit with me in hell. I’m pretty much only referring to Julia. She never really tried to find words; she just existed by my side as a reminder of the good that still existed. I know none of this has been easy or comfortable for her, but she’s been an example of grace and compassion anyway.

"Courage is being afraid and going on the journey anyhow". -- John Wayne

That’s the last year in a nutshell. Long stretches of depression punctuated by moments of unimaginable pain, but also littered with moments of laughter and gratitude. I hope the next 365 days of past tenses will be easier, with less punctuation and more litter. I hope to spend more time smiling at remembered joys and less time pressed into my mattress by the weight of watching you die. I want so badly to think of you without crying, without seeing your wasted face. I want to remember something good without lamenting the loss of it. I want to burn the image of your smile and your light over the image of your death.


What Sara Said – DeathCabForCutie

And it came to me then that every plan is a tiny prayer to Father Time
As I stared at my shoes in the ICU that reeked of piss and 409
And I rationed my breaths as I said to myself that I'd already taken too much today
As each descending peak on the LCD took you a little farther away from me

Amongst the vending machines and year-old magazines in a place where we only say good-bye
It stung like a violent wind that our memories depend on a faulty camera in our minds
But I knew that you were a truth I would rather lose than to have never lain beside at all
And I looked around at all the eyes on the ground as the T.V. entertained itself

Cause there's no comfort in the waiting room
Just nervous pacers bracing for bad news
And then the nurse comes 'round and everyone will lift their heads
But I'm thinking of what Sarah said
That love is watching someone die

So who's gonna watch you die?

It's a not-so-wonderful life

I've tried so hard to avoid the cliche, "the holidays are the hardest time of year when you've lost someone. I've tried to insist that EVERY day sucks the same as the day before. I miss my mom every fucking day. But I have to admit that Christmas really does amplify the loss.

 I've always been especially excited to buy thoughtful things for my mom... I get that from her.

See me hovering...

I almost never made it to a birthday or Christmas without trying to make her open presents days or weeks early. She rarely did. This time two years ago I was financially flush and able to splurge on really nice gifts. I tried to make her open almost every gift many days before Christmas. It was a good haul for all of us that year and a jolly holiday spent eating too much, playing Wii and laughing lots.

It's a major award!

 It was our last real Christmas. Sure, she wasn't gone yet last Christmas, but I challenge anyone who says it was a holiday last year. We were a sad sight. December 2011 was a time of heart attacks and no merry, no jolly, no hope, no joy. 

This year isn't very different. 

I am unable to find any real meaning in happy holidays. 

.

52

The first.

Tomorrow is your birthday. 

Every year I will wonder what you would've looked like as you turned a year older. On the day of your birth I will try not to dwell on your death, but I will wish on your candles for all of the birthdays we've lost. I will eat cake. I will tattoo your memory on my skin and I will cry. Celebrating your life will make the loss of that life all the more acute, but I will celebrate... because you were amazing... because you were my mother... because you were....

                                              because I love you.

The last.

DAYDREAMER

One of my favorite things to do is wake up slow.

Scratch that....                                   

One of my former favorite things to do was to wake up slow.

Nothing to do today. No work, no pressure.... just hit snooze and doze for a while until you feel like getting up. 

I like to use this time in bed, half dozing, half waking up, to daydream. It allows me to come close to something like lucid dreaming I can set the scene and oh, the things I can dream of...

Sexy things, adventures, vacations, bright futures.... a world of my own creation all painted brightly on the walls of my brain.

I've still been working from home most days which affords me many opportunities to wake up slow. Most of these mornings I simply get up ad start working instead, denying myself a previously coveted pastime.

These days, even when I am controlling the direction of my dreaming they turn quickly to nightmares that waking can't vanquish.

When the Boogeyman is your own memory, you most painful memory, even the brightest nightlight, the fluffiest covers pulled over your head, and the most reasonable brain can't chase his shadows from under the bed. This monster is real.

This morning I was waking up slow. I'm laying under the covers with sleepy dogs snuggled by my feet. I'm moving soon and this makes pretty good daydreaming material.

Finish packing, quick....what will my old place look like when I'm done and it's all empty?... How long will I procrastinate unpacking my stuff?....Unpack soon so I can have people over... it's gonna be so nice having friends so close by...how cute my new place is gonna look!....Where to hang the Indian flute girl painting?... do I want mom's ashes in my place?.... Mom.... ashes... my beautiful mom is ashes now...

The haze of anticipation and excitement clears and a heavy fog of memory overcomes me and I'm there holding her hand. Julia and I are talking about ordering Thai food. I put on some indian music for mom because I know it comforts her. Mom's gulping like a fish out of water. We're taking about curry.... "I think the bipap is the only thing breathing." The silence of the machines turning off. The stillness in her chest. Face ashen and drawn tight. Really?! 

Life Shift

New reality. 

No more mom for you.... ever... never ever.

I didn't whisper comforts or love as she left.... I talked about pineapple curry. 

I was picking an appetizer when she took her last breath.... I made a takeout order while she was FUCKING DYING RIGHT FUCKING NOW!

 

 

No hurry. No need to rush out of bed. Go ahead and try to wake up slow dreaming of a better tomorrow when all your tomorrows will begin with remembering she's dead and you'll never hold her hand again... ever.

You're the only one who really knew me at all

I went through all the photo albums. I was tough, I smiled, I felt happy peeking into mom's life. I'm happy to be sharing it on facebook with the Lanterns for Kay folks across the country. While I was pulling out pictures from albums that I wanted to scan I was specifically waiting to find this picture. When we got to the end of the albums and it hadn't turned up I figured it was in one of the many envelopes and boxes of pictures, but hoped we'd find it soon. Luckily, Kathleen made the discovery shortly after I started scanning...

This picture slays me. It lays open my heart and all of the stuff held tight in there, the grief, the love, the loss and the despair just comes seeping out. I've been letting it in and letting the pain own me for a while. Sometimes I'm stronger than the grief and I can fight it off with a laugh or a distraction or a drink or two, but other days it devours me and I spend the night in it's belly on my side with a hot face, an empty tissue box and a soaked pillow. Tonight I write to you from the belly of the beast....

We all want to be kids again, right? The innocence, the fun, the bright future still waiting for us. I want to be a kid again just to be HER kid again. I'm maybe 3 here, and I know that little girls heart beats every beat for that mommy. I know that little girl used to cry for the 30 year old woman sitting here missing her mom. I used to cry my little girl tears in anticipation and dread for that day that my mom would be gone from me. I would worry that she'd leave and I'd forget to tell her I loved her "this much" and she'd be gone and I'd be left with those words hanging in the air unheard by my.... my world. You can tell... Her love was a big love too. I was her cherished only child, her tiny clone and, in my adult years, her closest kindred and her partner in crime aka teasing the shit outta people. You can see the vastness of the love between us, even in a simple snapshot.... You can not see the void this will eventually leave in that little girl's heart when her world is demolished by the letters ALS.

I look at this picture and cry my big girl tears because my whole being aches to be that little girl wrapped in her arms again. See that little girls face? I still look like that when I cry. I physically hurt when I spend hours wishing she had me all pressed into her and safe and on my way to "it's ok land."

"It's OK Land" is gone forever. There are no more arms waiting to pull me close. There is no one left on earth who can hold me close and heal my heart by pressing it next to hers. For this my limbs scream in protest, literally sending waves of pain up through every nerve and into my chest where my heart just keeps on keeping on in spite of my indifference towards it doing so.

What am I supposed to do with this? Everyone I talk to who has lost a parent tells me it never feels any better, it just gets easier to push it aside and function. I can do that already. I work, I feed myself, I walk the dogs, but I can't even think about what to do with myself for the next 30 years. I'll be 60 and looking back on half a lifetime of aching for my world to be whole and right again. Aching for the impossibility of it. Squeezing tight those holes we all have in our memories so I don't lose one single moment.

What do you do when you loathe the present, fear the future and worship the past? Is it possible to walk forward while facing backwards? I got pretty good at backwards walking when I was in marching bad, can I just do that? Look back but move forward and ignore, medicate and numb the present? What the fuck am I supposed to do with this? A question with no answers. There is nothing to do for this but live.

Some how we live.



I want my mommy. I just want my fucking mommy!

I'm just a little lot less lighter now

Do I need a shrink? How do you know when you need that kind of help? Am I grieving correctly? Am I going to regret the way I'm living through this because there's some other shoe waiting to drop and I'm doing nothing to prevent it?

I don't know.

Some nights it sits heavy on my chest, the weight of my loss. It's a tangible feeling.... But I sit with it. I let it press down on me. I use the time to think of all of those things I avoid every day to keep myself together. I think of all of the things I've lost, all of the questions I'll never get to ask, all of the hours, weeks and years I will spend missing her.
I think about the year spent in desperate frenzy. I think about the title of this blog. I think about that girl sitting there sending her deepest hopes out into the world and about the delusion.... I really thought that this could not really happen. I really thought there was no way my mom could actually be ripped out of my life. Something would change and I'd get to watch her get better and I'd get to feel that relief.
I think about my family. I know I lost my mom, my fucking MOM! but she was someone's daughter and that's it's own special kind of hell. A hell that's led to open heart surgery, MERSA, pluracy, multiple hospital stays and long weeks in recovery. My grandma is going to be ok for the same reason my mom was going to miraculously beat ALS... because my tiny heart can't bear to lose her....
She was someone's big sister... I know painfully little about her childhood, but these women, my aunts, they spent their formative years side by side. They had very similar experiences, the same parents, the same memories. I have no idea what it's like to share that bond with anyone and I don't envy the void left in their lives.
I feel so sad for Sioux. She wanted so badly to be in mom's life, but for unknown reasons mom stonewalled her. There was never an ounce of anger expressed, mom just never returned calls. I know she laments the time she could have spent knowing her sister all these years and I am so grateful she got so much time in with her in that last year.
Poor sweet Kim. Her baby sister. I think she, more than anyone, can understand the hole in my soul. Mom was old enough to be maternal to her. I know that Mom loved her Kimba, loved her deeply and unconditionally.
And her babies. Gone is a favorite auntie. A Skype pal, an eternal supporter and biggest fan. Brandon was her golden child. A perfect baby, a singularly wonderful child and a bright and amazing young man. She adored that boy. And Dasany... her little soul clone. Sassy, brassy and whit as sharp as a tack. I miss their Skype nights like hell and I can only wonder what that little girl's brain and heart are going through.
I don't know how to fee about Gail. I feel like the rift between her and mom really had far reaching impact on Gail's relationship with our whole family. She's been disappointingly absent during my grandmother's loss, illness and recovery. She lives 5 hours away and makes time to tend to her daughter's every whim, but can't visit her dying sister or her critically ill mother. I know Sioux could really use the support of her big sister too, and I miss being close to my aunt Sippy. We were great friends and had tons of laughs over crafts of all kinds and I feel like she never forgave me for TTS debacle... over a decade ago. I know my mom shutting her out really hurt her, I was there for her when she'd get down about it even when it felt like being in the middle of a fight I never even fully understood. I've wished, more than once, that she'd call and ask to come see me. That she'd hug me like old times and let me tear stain her shoulder because she knew it's just what I needed. I just need an O'Connor hug of some sort.

Or just a hug... in general.... a mom hug :(


I wish someone could just put plastic wrap over my life... push pause... let me breathe. Keep my life here in Seattle well tended and watered and send me to all of the places where family and love are. A tear in my beer with Sioux. A quiet day with Kim, no kids, just us and our puffy red eyes. A day at home with Grandma, in bed just quiet and sad and healing. A day with Brandon kayaking or fishing, probably not talking much unless I force him, but quietly remembering. A day in a whirlwind with Dasany. Pure, carefree and resilient, learning lessons on living in the moment. A day of straight answers, no excuses and mended fences with Gail. A day to rally all of us together to remember. No judgey. All lovey. You know she'd smile at us all rallying to numb our wounds with love.

 

I dream of her. It should be a comfort, but it's not. I sleep in a world that's right and wake to a world gone wrong. She stands up from a chair on her own. We marvel and that relief floods my heart. She's going to get better. But I'm going to wake up soon.

And Momdad..... my kindred in FML. My closest family and partner in witnessing every minute of hell. The one who did the things I couldn't bear. Signed the papers. Changed the diapers. Gave the baths. Gave up everything to do her best to stay sane and watch your beloved die. There are small moments my heart resents, but it's well diluted by the hours and days and weeks spent held together by threads and living in a nightmare. I am forever grateful for not having had to flail in the dark while my whole little life went to pieces. I would have lost my Dude, my dearest friend, to move in with mom and take care of her full time. He's sleeping on my feet and I am reminded of the sacrifices she's saved me from. I know I have an ally. I know she's always felt like I was overindulged by my family in certain ways, but she is generous nonetheless. I think this shared loss has put a lot of long held resentments and grievances in perspective. Mom's parting gift was to heal our relationship and set us leaned against each other for support. And I know this is how she wanted it. I know she worried for us and really hoped we'd be close.

I'm still lost on the memorial service. I don't know what the proper way to memorialize my mom would be. Who should be there? A personal family only type thing? A traditional service with a few people saying words and scattering ashes somewhere? Where? A larger gathering that includes friends, coworkers and family? I'd like to hear people talk about her. I'm interested in knowing the different ways she touched people and the different ways people knew her. The only solid plan I have in my head is a paper lantern (maybe with pictures drawn on it for her, maybe some words) floated away with a tiny bit of ashes on the 4th of July. I moved to Seattle on the 4th of July and each year I've spent the 4th at her house, delighting her with loud booms and pyro type stuff. Watching the fireworks show in Edmonds. Fantastic times. They sell lanterns that fly at the fireworks stands, I've always wanted to try one and it sounds like a neat way to send her some love up into the universe. Julia and Kory are the usual companions to these 4th of July adventures, I know they'll back this idea and participate. Maybe I can convince Kathleen to tag along as well. Maybe Kim, Sioux, Grandma, Brandon, Dasany and even Gail can acquire these lanterns (a six pack is $25 or less on amazon, just sayin) and launch them on the 4th. I might just go create a event on facebook for this and quit owrry about the right way to have a memorial.

I'm cried out. Dried out. Surfing the bliss of numb. Ending this eternal blog. With love.