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.