Use Your Voice: The Sing for SUDC Challenge

2 Sep

You have been nominated! Don’t worry, I’m not asking you to simultaneously freeze your ass off and waste water- in fact I’m asking you to use something you already have so it doesn’t go to waste.

We’re all familiar with the ALS ice bucket challenge by now- it’s popularity has raised over $100 million dollars donated from more than 3 million people to help raise awareness and funding to help fight Lou Gehrig’s disease. While I have feelings I’ll put aside about people (especially Californians) using extra water during a horrible drought, the donations and support for the ALS community has had an extreme upswing in the past few weeks, and I’d be hypocritical to dismiss the power of social media to provide needed awareness and funding for such a devastating diagnosis. I’m inspired by it’s effectiveness and impressed by how much has been raised.

I was comparing it to the awareness and donations for the SUDC Program, which not many people are familiar with, and it’s raised just over 1 million dollars since it’s start over ten years ago. In contrast to the millions of federal dollars annually allotted to research and prevention of many diseases, even rare ones, the SUDC Program receives no federal funding and is dependent solely on private donations. While neither ALS or SUDC make the list of the leading causes of death in any age group, they and plenty of other rare, yet debilitating causes are more than worthy of attention from our minds and wallets, alike. The death rates between the two are nearly the same: ALS takes the lives of 2 out of every 100,000 adults, (usually diagnosed between the ages of 40-60) and SUDC is responsible for taking the lives of 1.5 per 100,000 children (usually ages 1-4) annually- the number gap in the statistics there is nearly non-existent; it’s merely in the awareness and funding where the number drastically differ- and I mean to change that.

SUDC corrected
I want to know why my son died. Moreover, I deserve to know, and every parent on the planet deserves all the prevention possible for protecting their children and their hearts from the permanent ache and the permanent question that reside in in mine, and from learning about SUDC the hard way. I don’t mean that want some vapid, existential hippie quote or religious passage to answer my question; I want an answer that science can prove, I want facts that can stand to test and reason, that I can look at and hold in my hands and head and comprehend, even if my heart never will. Most diagnosed with even the most unheard of diseases are granted at least that much.

I get through my days because my heart has been forced to accept that things happen and the world keeps turning and sometimes, that’s all the answer we get- but this isn’t that time. Here, I have power to help find a reason on some level for his death and my suffering, and to prevent others from ever having to live and feel this way.

And that takes funding. It takes awareness. It takes action. It takes you.

There’s talk of “using your voice” all over advocacy sites, which I’ve chosen to take quite literally. I’ve never been able to sing in front of an audience- even karaoke to a room full of drunk people who could care less and wouldn’t remember, anyhow- but I have always been able to sing to, for and with my kids. Music has always played a large role in my life, and I’ve spent many rough patches, late nights and too-early mornings quelling the discomfort, exhaustion or anxiety of fussy babies with song. I’ve never been the best singer out of any group, but I was in choir all through my school years and I can at least carry a tune, if not perfectly. My voice is nothing big, but my love, my desire for change, for answers, for all of the other parents suffering from losing a child to SUDC to have the support and resources they need- that’s huge- bigger than my fear, ego, anxiety and grief combined. Music is a coping method I still use as balm for my own troubles all the time, and now I mean to use it to sing for Patrick and help him in the only way I still can.

The #singforsudc challenge is the same as the ALS ice bucket challenge in a few familiar ways: You donate $10, nominate three friends and have 24 hours to post your video- but not to buy ice and dump it on yourself- simply to record yourself singing a song that you sing to your children, or one you were sung as a child- any song about, for or to children will do. There is no minimum (or maximum) time limit- sing Twinkle, Twinkle in your car and get it over with in 20 seconds, sing something soulful and sentimental in your bathroom for the acoustics, even sing it loud and silly with your kids at the park- but do it. Use your voice. Donate, and nominate your friends, especially fellow parents, to do the same.

I chose to use one of the songs I used to sing for Patrick that, to me, exudes big love in sweet and simple way- especially the bond formed between parent and child. I (hopefully understandably) couldn’t get through speaking in the video and maintain my singing composure (heck, it took me a few takes to even find my composure, even without trying to speak first) but, despite my list of fears, I did it- and you can, too.


Easy-click donation link here: http://www.sudc.org/GetInvolved/Donate.aspx

If you’ve got another pressing cause cause close to your heart and/or you can’t carry a tune in a bucket, use your voice metaphorically and get creative with your video, and feel free to mention another cause along with SUDC. (I’m wearing turquoise in support of  ImprovingBirth.org in my video) Tap dance for Fibromyalgia, stand on your head for heart disease, do skate tricks for pediatric cancer, paint a picture for Osteosarcoma… the world needs your voice, it needs your individual talent and passion to make a difference.

When I asked, “Which causes or diseases do you wish there was more activism and funding for?” on my Facebook page, I got a wide variety of responses- with a constantly updating list, I can’t link in them all, but here are a few other causes on the hearts of fellow parents, all of whom I challenge to #singforsudc and use their voices for their own causes, too- including, but not limited to:

Pediatric Cancer
Intrahepatic Cholestasis of Pregnancy (ICP) or Obstetric Choletasis
Endometriosis
PTSD
Anxiety and Depression/Suicide Prevention
Sensory Processing Disorder
Cystic Fibrosis
Apraxia of Speech
Neurofibromatosis
Colorectal Cancer
Multiple Sclerosis
Sarcoidosis
Epilepsy
Bipolar Disorder

… and in honor and memory of my father, who survived and thrived with both Cerebral Palsy and Diabetes, but was taken by Melanoma four years ago this very day, I add those diseases to the list, as well.

Please remember to use the tags #singforsudc and #useyourvoicechallenge and the link (http://www.sudc.org/GetInvolved/Donate.aspx)  in your posts. If you choose to use your voice for an additional cause, please mention SUDC in your video, and when you nominate people to use their talents for what they love, ask them to mention your cause, too- that way, everyone can benefit from additional advocacy.

not interested
Off you go, then!

I can’t wait to hear you.

Keep track of Sing for SUDC posts on:

And see it up on the SUDC Program homepage under “Get Involved” tab here:
http://www.sudc.org/GetInvolved/SingforSUDCChallenge.aspx

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Small Graces in Small Places

15 Aug

 

to love lifeIt was about a week after Patrick’s death that I chose to stop taking anti-depressants. What I was taking was wiping my mind clean every few minutes and I still have very few memories of the days immediately surrounding that time. I know I was surrounded by friends and flowers and well-wishes, but I was too out of it to keep track of my living children, which was too much for me. It took a good day or two for it to completely clear my system, and I remember distinctly the moment that I “woke up”.

I was sitting at the kitchen table with a few friends, Danny and my sisters. I remember shaking my head to try and somehow physically clear the dust, looking up at my phone in front of me and the faces around me with the first shred of coherence in days. Everyone was silent, looking back and forth at each other, wondering the next step until my sister Amy said, “Um, do you want to go for a walk or something?” My immediate reaction because of my empty arms and the quiet house was, “Well, I should probably wait until Pat wakes up…” and any remaining energy was sucked from the room.

I realized from how quickly and simultaneously everyone’s faces and hearts fell that I was speaking from habit a sentence I would never have reason or opportunity to repeat- and I broke. I absolutely crumbled. I remember crying at his viewing and burial, and I probably cried for most of the time in between, but it was the first time that I consciously came back to my life and had to face the reality as if it were new.

The tears came in a heaving, choking rush so much that all I could do was bury my head in my arms on the table and sob, leaving a room full of my closest friends and family speechless, helpless and in tears, too. I felt awful for them AND myself, which made it even worse. There was nothing to say, nothing to be done to fix it by anyone- it was one of the most pitiful, sad moments after his passing that I can recall.

After several minutes- how many, I couldn’t say, there is no time in GriefLand- I contemplated being able to lift my wrecked-up, shuddering, snotty, drooling, tear-stained head to meet their concerned gazes, desperately searching for words for myself, words for them… but what is there to say at a time like that? We were all looking at each other for answers.

My mind and heard were aching, breaking, racing… and then I lifted my head and heard a familiar voice say, “I’ve found four places matching “Boo-hoo” . Fucking Siri. Are you kidding me right now?! Faster than I could blink, all eyes were on me, waiting for my reaction. I wanted to scream and cry and throw my phone and set it on fire and smash it to pieces, but I had no energy for any of it.

And I laughed.

The room broke into a relieved echo of laughter, and we just kept laughing until the tears all came all over again. It was the first time I’d smiled since the night he died, which made me feel as guilty and hopeful as much as it was a mixture of burden and release, which is how my tears tend to remain, even still.

And that’s really when I got my first dose of learning to cope on my own… no drugs, no therapist, no special situation, just support and perspective. It was my first after-loss lesson that life goes on whether or not you’re there to feel it-  the sun will somehow keep rising and setting and my friends and my phone will keep trying to help as I am able to ask for it- and sometimes when I don’t even realize I need it. It was the first time I had to really wrap my mind and heart around the fact that I’ve been given a broken heart with pieces that can never heal, but also that there are still people who care and moment after moment where I will have to learn to choose to laugh or cry- and how relieving and tragic both forms of expression can feel.

I can’t always maintain perspective or find a smile for the way my life happens sometimes, but I’m glad in that moment, for myself and everyone around me that I could choose love- and I hope from your deep down, dark places when you look up, there’s something or someone to help you find perspective and choose love, too.

Making Moments Momentous

12 Aug

Progress doesn’t always feel like progress… it rarely comes in leaps and bounds, though at times it goes skipping and is usually found on indirect, untrodden paths. Sometimes, a lot of times, it’s all most of us can do to keep putting one foot in front of the other, yet inevitably, eventually, we look up and turn around and realize we’re not where we were anymore; the ground feels different beneath our feet, the climate, the people, the situations and surroundings have changed.

It’s the silent slip between season to season, when you blink after your first month parenting and your newborn is suddenly sprouting teeth, saying your name and taking first steps, then starting school, and then losing those teeth that seemed to have just sprouted only days before, skinned knees and blooming soul. It’s what happened when my child was rocking in my arms nursing one day, then rocking in my arms never to move again the next- and before I’ve known, and far beyond when I’d ever chosen it, the feeling of that weight in my lap has become less familiar than the weight of the emptiness that’s slowly taken over it’s place.

And I hate it. I want to claw at time itself and pull that feeling back to me, then pull even harder and put all that distance behind me for a moment until I can reach one of the Neverland moments of the cool, downy feel of his hair on my cheek, the warm, salty-sweet scent of  awakening from his milk-drunk sleep, the way my finger and thumb would wrap around his delicious thigh as the other wrapped around his head, swaying in quiet rest, heart to heart in peaceful resolve. Those moments in time, like all others, only last for exactly that long before another child comes crashing in, before the phone rings and I’m late for an appointment but just couldn’t wake him because gawd, I’m so tired and he hasn’t napped properly in days.

They’re just moments. That’s all we get.

And somehow, the moments stack up with each step and become memories, and the places we’ve set our path become our past. I’ve found that time flies by particularly quickly during the times it feels like I’ve just got to keep my head down and focus on each step- like the first year of parenting or when I moved across the country, when I began school again, when I’ve experienced loss or any other big life changes… My instinct, and I have a feeling that of many others’, tends to be to fold inward and watch my footing as a trip along an unsure path I’ve been thrust upon… I forget to look up, and when I finally do, things have changed- and I have, too.

The thing is that all those exhausted moments, all those times things don’t go right and I’ve had to hit another learning curve full speed, those times I’ve felt my heavy head and heart is too weary to go on- that’s when I need to take the sign that I’ve been down too long and when I need to look up the most. I need to see the trees growing every which way toward the sun, to see and reach out to my friends who have been caught in their own paths and need the reconnection as much as I do- but someone has to make the move.

So, friend, my white flag is up. I’ve been down too long, and I’m making a concentrated effort lately to look up, to look out beyond my path. I’ve made a point these past few weeks and even months to come out of my grief bubble, to see old friends and even make new ones. It’s terrifying and vulnerable to come from a huddled, protected crawl to standing up straight and looking another in the eye, let me tell you. Everything I’ve been holding close comes into plain view… but I have to remember that if they stand to meet my gaze, their wounds and their baggage are visible, too- and we are given the gift of being able to recognize ourselves and each other for what, who and where we are. When we look around, we can see that everyone around us is carrying baggage of different weights, shapes and sizes, too- everyone is healing from wounds fresh and old, alike. More than anything, we can realize we are not alone, and not the only ones who are just trying to keep our heads down and push through.

With the passing of Robin Williams yesterday, it becomes a bit more tangible that the happiest seeming people may in fact, be the saddest, that even those who seem impenetrable to fear and heartache are those most affected by it- people whom would never have you know their pain. So I’m standing here, wounds, scars, baggage and all, with and for you, friend. I’m hurting and I’m struggling, and I’m here. I’m taking a moment to look up from my current life and dilemmas to tell you that I hear you, I see you, I read all of your comments and messages, and they nearly always come at times when I seem to be the most down. They come far less than you’d imagine and help more than you know- and hopefully, this one helps you.

I see you struggling, I see you uncertain and afraid. I see you bruised and weary, swollen in heart, head and eyes from the worry and the hurting and the effort- and I feel you, I do. I’ve been there, and I’m here- and trust me, I’m no more capable or equipped than you, perhaps just more practiced. From where I stand, knee-deep in sorrow and struggle, I encourage you to, even if just for one of your precious, fleeting moments, let go. Get outside and feel the sun, the wind, the air on your skin and just be.

When your heart feels too full, friend, share it. Open it. Give some away. Let that pain, that love, that messy, juicy life spill the fuck all over the place, dance in the mess you’ve made and invite others to join the party. I’d love to come! Stretch marks are a roadmap of all the places we’ve grown, scar tissue marks from the places we’ve been hurt but now have thicker skin. There is no one in all the world who thinks, feels and moves the way you do. You’re irreplaceable. You are loved, you are worthy, you are beautiful and perfect, right here in this moment. Just in case no one’s reminded you lately.

So today, a cloudy, cool Tuesday in California, no special day, date or reason but that you have the ability, I encourage you to look up from your life. Call an old friend, go for a walk, get out of your routine and play with your kids. Say thank you to those that have helped and are helping you along the way (Amy, Chris, Casey, Amber, Adriel, Jes and so many more lately, for me…) and pay it forward to those you see how to be helpful toward.  Be grateful for your health and that of your children and loved ones, for friends, for family, for knowing that for better or worse, in the words of my Grammy and in it’s own time, “This too, shall pass.”

All of it.

 

Hesitation Station

23 Jul

hesitation
I’m hesitating even writing this sentence. I’m stuck lately, my head and heart so full of comparisons and connections for my future (and that of my children) that it’s hard to move forward- or even sideways. Hesitation involves some special blend of procrastination and worry for me; putting things off until I’ve surveyed everything from every angle and measured, weighed and provided counterweight for every outcome I can think of. I desire on a very deep level to be happy and to embrace life, joy and gratitude for it all with everything that I have and am. I’ve even figured out how, mostly… but I’ve discovered that on an even deeper level, I’ll always be waiting for the rug to be pulled out from under me, waiting for the other shoe to drop. My heart feels like it’s been in a cage match with reality for years now, but that’s not the reality I want to enforce for myself OR for my kids. Although deep grief  will always be a part of my life,  I recognize that I need to work to change the ensuing fear of (more of) it’s vice grip on my heart, and the arms-distance-length I keep people and opportunities away from me because of it.

I think (especially sudden, unexpected) loss will do that to a person. I poured my heart and soul into Patrick’s health and overall well being; I managed to keep my pregnant body as healthy as possible, did everything I know to be “right” (for me, my family and my level of privilege and lifestyle) after he was born and he was healthy at every check up. I loved him, held him, wore him, nursed him, rocked him, sang to him, read to him, paid attention to every aspect of his well-being with every ounce of my capacity. And then he died. For no reason. Out of nowhere… Just. Fucking. Gone. And with him a piece of my trust in the Universe, and in my own heart and capabilities.

Trying to find my “new normal” after his death; ways to fold the hard facts and feelings of such loss into my current life and into the building of my future- especially when trying to relate and connect to, and eventually trust and depend on others- is a constant, challenging process. It becomes a mixture of embracing “Carpe diem! I’m so grateful to be here, now, with you- let’s do this!” and thinking “I know you’re just going to suddenly vanish… but here we are, so we might as well just make this (possibly singular) time we’re together pleasant“. Both sentiments have echoes of finding joy, gratitude and accepting things as they are, but the latter is laced with that fear I can’t seem to shake, and impedes the happiness of finding joy in the moment and in trusting my heart- or anyone else’s, be it a reader’s, a lover’s or my friend’s.

Patrick was the last one I gave my heart, my joy, my attachment to. I not only loved him with my whole heart, I liked, enjoyed, wanted and cherished him. I’m very pro-choice and already had three kids from two different fathers when I became pregnant, but I chose him and with that choice, a path for myself. I felt he was meant to stay, and that he was a boy; I named him Patrick for my (recently deceased) father when I was less than a month along. During my (HG riddled) pregnancy,  I gave and geared my life to nurture and grow the relationships I had with him and with his father (and as always and still, my other three children) in my heart, mind and life. It’s been quite the process over this last year and a half to adjust my sails accordingly… The life I’d meticulously and tirelessly worked to create for years was gone in an instant. Again.

It’s fucking hard to learning to trust myself and the world around me after such massive, sudden, successive losses. It feels impossible sometimes, especially when I consider the past 5 years. In 2009, one of my best friends from high school was murdered. Two weeks later my marriage and life as I knew and had planned it evaporated in seconds at a barbecue in the July sunshine during a casual conversation.

2010 was the year cancer took my father- one could argue that maybe we saw that coming after his diagnosis, but you don’t expect your healthy, capable, planning-his-birthday-fishing-trip father to die at 54, no matter what. You just don’t. He was diagnosed already at stage 4 Melanoma, and his BRAF cell mutation meant that his cancer cells breed even more quickly than in most people. He went from the strongest man I knew to the weakest in time that doesn’t seem linear or possible- like an hourglass with a triple wide opening, we watched all of his mental and physical strength slipping quietly and quickly away, though I won’t doubt for a minute that his spirit was every anything but valiant, kind and stoic.

His last trip to the hospital, when they said they couldn’t help him anymore, to say I was shocked and saddened is like saying the sun is big and warm. I felt overwhelmed, unprepared and desperate to fix every single damn thing. If a magical faerie had come in that instant, I would have a (possibly color-coded) list of what to change exactly there and then to make everyone feel -and be- better. The trouble is the faeries never come, and we’re these wild minds and hearts with these grandiose feelings and ideas stuck in skin and bones in a chair in a room where sometimes there’s news that your father is going to die. Soon. 

It felt like someone blew out a candle in my heart. I caught his eye -and mind you, I have zero poker face- with  family, nurses and friends buzzing about the room, he looked and me and said, “It’s not over yet.” and it was true. He was still in the room, still there with me in body, mind and spirit- and still, with his father’s heart, trying to comfort me. He knew that we still had that day and however many we were granted after. I thought then that he was with me in thinking he was still going to beat cancer like the BAMF he was, even if by will and spirit alone… but I know now that he was telling me, “I’m still here right now, and we can cherish that.” Those were the last coherent words that he gave me. He would muster an “I love you” to my mom and I my sisters in the coming days before his imminent departure, but that’s the last clear message I got to hear from his lips, from his eyes, from his heart: Carpe diem.

fly

I’m hesitating at writing another sentence even again, though I know this is the part where I talk about choosing love over letting fear hold me back- but the point is that dammit, I’m human and I’m fucking scared. It’s hard, even for people who have tools to use and know how to use them, even for people who seem to process things with honesty and grace, to move past that “What if I fall?” part.

I recently created a GoFundMe account for a friend wanting to try roller derby and not having the funding available to do so because I saw her in a similar position of not seeing quite how to make the jump, to branch out and do the scary thing. The thing is that I know for a damn fact that she’s strong and capable and smart and worthy and talented and brave and all the the wonderful things I don’t feel all the time- and I wonder how many people feel the same about me. I want to show her as much as I want to show you and I both, dear reader, how rewarding and validating it can feel to make the leap- even if we both need a little pushing sometimes.

So here I am, pushing myself to write and put myself out there, too. Vulnerability and fear are huge, scary monsters that we all have differing versions of. It reminds me of Where The Wild Things Are, with Max’s room being our heads that we create entangled forests in, his Wild Things our fears…

“And when he came to the place where the wild things are, they roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes and showed their terrible claws till Max said, “Be still” and tamed them with the magic trick of staring into all their yellow eyes without blinking once.”

Those beasts raged and roared at him until he was able to look his Wild Things in the face and say SHUT THE FUCK UP, DAMMIT. I HAVE SHIT TO DO.  … which is what I’ll try and keep in mind the next time there’s a wild rumpus I can’t get out of  in my head.

*If you’d like to contribute even a dollar to be part of battling fear and budget monsters for my friend, click here.

Communing with Coffee

2 Jul

coffee and heart
It’s funny-I think the two things that I’m best known for are for my openness about grieving and my love for coffee- not two things I’d have aimed for or chosen, but there it is. The first poem I posted has to do with both grief and coffee, as do most of my days, I suppose… I post about coffee on Facebook nearly every morning, even if I post nothing else all day. We all know that stereotypically, parents need coffee in the morning, so I’m sure no one questions why I embrace my addiction with so much warmth and energy- aside from the fact that those qualities are what coffee gives me in exchange for my own.

I started drinking coffee in high school because I was in choir, and sometimes rehearsal for that choir required an evil invention called sub-zero period and it always required a zero period, so my mornings were early- as were my dad’s, who was in charge of my transportation to school until sophomore year. My father was a notorious coffee consumer, as is his mother (whom we lovingly refer to as ‘Grammy’) still. He got up and made coffee every morning, and the sound of the grinder followed by the smell of coffee brewing has been one of the only pleasant tolerable ways for me to be awoken by another person for more than half of my life now. (I said one of. There are a few other ways I’ve come across in my adult life via offspring or ways to make them that I find mostly adjustable-to as well, but I digress…)

My dad was a bit stoic when it came to duties- including ones involving carting a teenage daughter to school at dark-thirty in the morning because she wanted to sing madrigals, old hymns and folk songs with 6 part harmony. But I did, so he did, and we quietly sipped our coffee together to the lull of the country music station in the wee hours of the morning as the sun rose, five days a week. We would pull up through the fog in the empty parking lot, I would hop out and we’d wave goodbye as we went our separate ways.

He owned an auto repair shop in town and worked 10 hour days, 6 days a week or more and didn’t mind getting there early, since there was always work to be done. At the end of the day he was exhausted, fully permeated with his signature blend of sweat/Old Spice sport, grease and Vanilla Cavendish pipe tobacco  (in fact, “Hiiiiiii, Stinky!!” was what I would say when he walked in the door, even- it became a nickname between us for years to come because of it) engaged in full auto-pilot-mode: shower, dinner table, TV and then bed to repeat the whole thing in the morning.

Until I got pregnant in 2001, my father was also an alcoholic, albeit a goofy, hilarious one- he was never abusive, ever, ever, ever. He was the kindest, gentlest, most generous man I’ve met to this day, but his alcoholism definitely disconnected him from us. By the evening, my father was a different, more distant, troubled and scattered man than the freshly showered one who would sing along with the radio to the words he knew (and some he didn’t) despite the fact that he couldn’t carry a tune in a bucket for all the money in the world. I’m sure part of him was happy for me having made it into such a locally (and satewide/nationally, if ACDA and CMEA competitions count) prestigious singing group. It was probably that same part that leaked out of his eye and slid down his cheek every performance- the parts he wasn’t sleeping through, anyhow. It’s okay, Daddy- I forgive you.

I still have strong olfactory triggers from San Francisco Bay Blend French Roast- I choose not to drink that particular blend because I like savoring the specific smell of what my father loved so well. It’s as if the years he spent being infused by that smell has somehow become years of that smell being infused with memories of him, and I’m forever grateful for that connection. The smell of cars and grease, of ocean air and pipe tobacco are some of my favorite ways to get back in touch with the tie that binds me to him past his death in September of 2010. When I got pregnant in 2011, I felt right away I was having a boy and named him Patrick for my father’s middle name when I was only 2 weeks along. Some of my first posts right after Patrick’s birth were about grieving for my father, though I felt then that my grief was heavy- I had no idea… just no idea at all how heavy grief could be.

When Patrick died suddenly at 14 months old, I didn’t know what. the fuck. to do. At all. He (and my other children) were where I channeled my love, my identity, my healing- I had no idea it was even possible for life to just… end… but it can- and it did. (For more about SUDC, click here.)  I could hardly breathe, let alone eat, sleep or function on any other basic level. I couldn’t speak or write- my entire vocabulary was acid-washed from my heart and mind. Besides- there were no words to say, anyhow. I wanted to stay in bed forever. The world and my place in it had shattered and come to a complete stop in an instant and everything seemed beyond pointless and painful, even opening my eyes or speaking. I slept for days on end, seeking the only place I could hold my baby again. I lost myself in a sea of visitors and tears and frozen lasagna.

And one morning, saturated with sleep, I woke up before anyone else and I made coffee. I didn’t have to look anyone in the eye or answer to how I felt to myself or anyone else… I just. made. coffee. And it was good coffee. I drank it while it was hot, even. It was the first moment that I felt any sense of simple pleasure, of normalcy, of nostalgia, of communing with my inner sense of holy-fuck-please-give-me-the-strength-to-get-through-this-day-ness, of just being since the day Patrick died. It was the first time I felt competent at even the most menial task, the first time I’d made a single, conscious decision to do something to help soothe, stimulate and center myself, the first time I had thought of the first stumbling steps of my father in the morning on his way to grind coffee as he set to work on an unending series of tasks for the day. It was the first time I realized that though there is a vacancy waiting to be filled in my heart and cup alike, that I possessed the knowledge and capability to work towards filling them again- and I still use that tool every morning.

So when I post about coffee, I’m not saying “Ohhhhh, gaaaaawd- brace yourselves! Here comes the kids and the work and the drudgery of the day and nudge-nudge we all know that kids suck the energy right out of you, which is replaceable only in caffeinated beverages!”. Parenting is exhausting if you’re putting effort into it. So is healing.

When I post about coffee, I’m saying, “I’m here, day. I can do this. There are small things in life to enjoy and look forward to, and life and those little things will be here and waiting, no matter the day that came before. My house is too quiet again this morning, but I will fill it with energy and love… after another cup or so.”

“Actually, this seems to be the basic need of the human heart in nearly every great crisis- a good, hot cup of coffee.” – Alexander King

New Libations from the Makers of Haterade

1 Jul

Okay, okay, it’s time to get my activist pants back on.  I don’t feel “ready” or like I have more to add than anyone else on any one subject, but unless other people who think like that start using their voices, too, this world is going to stagnate into a foul cesspool of power and money and greed instead of a functioning, flourishing system of logic, compassion and freedom- my vote is for the latter, so I’m putting my money where my mouth is. Or my mouth where my heart is. Something. Anyhow…

I have a few posts simmering on the backburner at the moment and hundreds of topics I’d like to touch on, but after The Supreme Court’s decision to vote in favor of Hobby Lobby that “ruled that owners of private companies can object on religious grounds to a provision of President Barack Obama’s healthcare law that requires employers to provide insurance covering birth control for women.”,  I have a few pressing questions, starting with “Wait… what happened to separation of church and state? What did I miss?

Here’s John Oliver’s hilarious and accurate breakdown, in case you missed what was in question:

and here’s what was decided, (via Reuters)

“In their last decision of the nine-month term, the justices ruled for the first time that for-profit companies can make claims under a 1993 federal law called the Religious Freedom Restoration Act that was enacted to protect religious liberty.”

Religious liberty? Oh, you mean if you’re that ONE religion coupled the privilege of a position of power- nevermind the religious freedoms of the people who share the consequences and not the belief…

“In a decision of startling breadth, the court holds that commercial enterprises, including corporations, along with partnerships and sole proprietorships, can opt out of any law … they judge incompatible with their sincerely held religious beliefs,”

WHOA. Whoa. Corporations can opt out of laws thatare incompatible with their (religious) beliefs?? Does anyone else see this as a gigantic rabbit-hole of a problem? I sincerely hold a belief that there are gaping holes in the logic of this ruling. And I also sincerely believe cannabis prohibition should end, that it should be illegal to touch a pregnant belly unless the mother offers, that education should be free and holistic, that healthy snacks should be cheaper and more widely available than chemical shitstorms like Doritos and Slurpees,  and that my birthday should be met with an influx of fair trade coffee and dark chocolate each year. Can I some legislation here, people? Wait, I’m not a corporation, I’m just a girl…

 

 

Jezebel breaks it down this way:

Today, five men on the Supreme Court said that women’s reproductive health care is less important than a woman’s boss’s superstition-based prudery and moral trepidation about fornication for female pleasure. They ruled that it doesn’t matter if birth control actually causes abortions; it only matters if business owners sincerely believe that birth control causes abortions. They ruled that it’s okay for a corporate personto discriminate against a female semi-person and dictate that she not spend her compensation on stuff that might possibly be enabling sex without consequences, if they believe that God thinks they should. “boss great

And this isn’t just about the right to “sex without consequences”. People use birth control for more than just preventing pregnancy with one or who-the-hell-cares-how-many partners. In 2003 Clarence Thomas (who just voted  in the majority on this case) himself said, “it was not a worthwhile use of “law enforcement resources” to police private sexual behavior.” in regards to an anti-gay sodomy suit- yet he still voted to regulate “private sexual behavior” for people with uterus’ via employers yesterday.  Perhaps someone ought to remind him of his own logic here…

Private sexual behavior is just that, and should be (un)legislated that way.  Sexual preference and expression thereof in consenting adults should not dictate our freedoms or rights to healthcare.  Companies should not get more personhood than people. The end.

 

unperson wm

Becoming Unbecoming

29 May

20140529-081036-29436028.jpg

 

Since the moment you were born

you cried for me day by day

and I came to soothe you

heart and breasts full

frenzied or calm

elated or defeated

alert or exhausted

or somewhere in between

tenderly rocking

milk freely flowing

running my fingers through your hair

as you lay quietly

warm bath of oxytocin

becoming one love

 

Since the moment you died

I cry for you day by day

and sit alone, still yearning

heart and breasts deflated

anxious or numb

distracted or depressed

present or vacant

or somewhere in between

tenderly rocking

tears freely flowing

running my fingers through clover that grows

where you lay quietly

cold dose of reality

becoming a loss mom

RIP Maya Angelou

28 May

maya

Maya Angelou’s death was announced last night to the media and to me this morning by my mother texting me in tears… the fact that her life and death have moved such a wide variety of people so deeply speaks again to me about the power of words, of having the courage to be authentic and vulnerable and be seen.

Peace to a truly beautiful, inspirational writer,  poet, activist and soul.

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own back yard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.
Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.

From And Still I Rise by Maya Angelou. Copyright © 1978 

Maya Angelou on parenting, love and loss:

A Parent, Apparent

24 May

box people

“Authenticity is a collection of choices that we have to make every day. It’s about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.” – Brene Brown

Authenticity is one of the things I’ve been trying to put my finger on behind the purpose and pursuits in my life and writing alike. Allowing myself to be seen, whether I am deeply heartbroken and full of poetry, trying to get a point across or rambling and randomly musing, has been a challenge overall; having to move on without Patrick (I am never without him, you know what I mean…) has changed the task of simply showing up for my life every day into the most difficult steps I’ve had to take.

As I look back at Patrick’s 14 months (and four days), one of my only regrets is wishing I’d written something bigger, better or more during that time… but the worst is when I wish I’d written anything at all, the gaps of time I didn’t write because I didn’t feel _____ enough. I withheld permission from myself to be seen and those days counted because I didn’t feel I had anything worth sharing to contribute, because I was too tired and wrapped up in my own life to step out for a moment to reflect,  because I compared myself to others and fell short of an impossible standard I held for myself… and I lost would-be memories and keeping track of my progress because of it.

I’ve also come to realize moreso than ever that I’m not ever going to fit a mold made by someone else, and likely neither will my posts. My life isn’t the same as anyone else’s, how could my writing be? Wishing to be someone else, somewhere else in time,-or wishing to be myself backwards or forwards in time- is a waste of it. I’m just me now, here now, and that’s what I’ve got to work with… so here I am, hot mess and all. Seinfeld found success as a “show about nothing” because it was relatable, and I suppose that’s really the crux of what I’m trying to do here… Writing helps me relate, authentically to other people and parents and helps me find ways to navigate and relate to myself, too.

People hear the word ‘progressive parent’ and have an idea of what that means -to them- and then apply expectations to me and my life because of their definition, experience and projections. People may think I have a political agenda, that I’m some sort of hippie-ass guru-wannabe who just posts rainbows and Rumi quotes about choosing love and gentle parenting, or see me as deeply, permanently wounded mother who posts pained poetry that few people understand- and none want to. To a degree, all and none of that is true, because I’m fucking human, dammit. None of us fit neatly into any box except that one.  The vast majority of people and parents are not so easily compartmentalized- believe me, I’ve tried valiantly and we’re just too messy, the lot of us.

With that in mind, I tried to select a blog title that left room for growth & development, though I was choosing a permanent label that would be constantly subject to evaluation and translation. I landed on ‘Progressive‘ as a title because I means marked by constant improvement, moving forward, happening or developing gradually over a period of time, using or interested in new or modern ideas especially in politics and education… all of those things sound good to me. Though I identify with many of the general AP (attachment parent) practices I didn’t choose ‘attachment’ or ‘liberal’ or ‘crunchy’ or any other buzzwords because the only thing I know about parenting so far is that it changes, but my status as a parent never does- and hence, the name.

I never, ever feel like I’ve reached the final plateau or peak on my parenting path, (this sentence brought to you by the letter “P”!) ever- even when part of my journey as a parent meant finding the strength to keep walking down a road where I could only carry one of my children in my heart and never in my arms again. I’m not the same mother I was to Tobin 12 years ago that I was to Patrick during his time here, and I’m not the same mother or person I was before his death, either. The scenery has changed, my heart has changed, my privilege, my perception and my body have changed. I’ve learned a lot in the past decade and I only hope to keep learning more- I always want to know, to do, to be, better.

“I decided that the most subversive, revolutionary thing I could do was to show up for my life and not be ashamed.” – Anne Lamott

Showing up for a dimly lit fine dining in an atmosphere-controlled environment for a nice red or pint with a friend or lover- that’s easy to do, easy to share. (just check out Instagram, shoot!) It takes planning, discipline, grooming and effort all around to make that scene happen, which is why it’s impressive to show. There exist people like that, there exist blogs like that- calm, composed and collected,  and I stand in awe of them both. I wish my blog posts (and life!) were able to be presented like four star meals;  each part a carefully exacted creation full of flavor, balance, intrigue, talent and juicy goodness that makes the senses come alive… but that’s not me, that’s not where I am in life. I ain’t that fancy, yo.

Showing up here (and in most of my favorite blogs) tends to be more like making it with frizzy hair and even frizzier thoughts out to an end-of-the-month family potluck with something I put together with crap, is that all that’s left in the fridge?  It’s okay, though, because I know most everyone else who shows up is doing the same and trying their best, too. I appreciate the skill and privilege of the ones who have what it takes to come with something more polished… Maybe someday, that will even be me, but right now I’m not on the Zagat-radar and I don’t need to be.

I’m more like a taco truck in a business parking lot: I bring what I have to the “regular” folks & it’s usually of a certain general flavor. You like it or you don’t and it’s no offense to me either way- but you don’t need to approach my space to complain about how it’s not to your like, either. Just don’t come- or make your own damn establishment to your liking and go there instead.

Sometimes what I write is to a specific point and carefully prepared, sometimes I write just to do it and it’s a random amalgam of hodgepodge from my life- and both are (finally) absolutely acceptable for me. Beyond that, if I can’t expect myself to be arrive at the same space all the time, how can I expect that from anyone else? It’s not to say to lower the bar on living or writing or not to aim for it at all- just that we all come from differing and ever-evolving life situations with different moods and intent to approach it and there has to be some room for that completely normal fluxation. Our environments, energies and desires are constantly changing and full of colors, sights, sounds, flavors and textures to take in and love and hate- and try again, just to make sure.

alice

Choosing to show up in life and writing, for me, is about participating in the diversity and connection of it, not about displaying a singular composition I’ve mastered. My life and online presence require an integrative experience, born of many, many intersections both in how I relate not only to myself, but to others- and how they relate to others, even. We’re all connected, and we all bring something unique to the table- and no one gets say in what anyone else gets to bring- but we don’t have to eat it, either. Sure, there are foods and methods of preparation that are scientifically more healthful and are beneficial to know about- and some of us are in a place to be ready to learn about and employ those methods. Fabulous! Rock on with your bad selves! But the best of us need comfort food sometimes or aren’t in a situation where the best choices out there are available to us- which is why all are welcome here; and we can never know how sharing from our experience might help someone else or ourselves.

There is no end-all way to parent or write, just like there is no end-all way to be, and neither life or writing should wait to be tamed into something more glossy and put together before showing up and sharing at least a small part of it, especially with the people close to you.

Not quite, Doctor.

Not quite, Doctor. Thanks, though.

True friends aren’t not here for the show, they’re here because they know what goes on in the background and they like you because of and in spite of it all. My friends don’t mind when my house is messy, that I can’t cook for crap, the tornado of clothing I haven’t washed/dried/put away yet, my post-hike-stench or my loud kids because they show up in my life with their own messes (more comfortably even, knowing I don’t hide mine) and we meet each other where we are.

We show up to be together for the sheer joy of connection, to know we are not alone, to remember that we matter, to remember ourselves and each other. Being authentic and showing up for me means being brave enough to engage in my own life and the lives of others without worrying if I’m “enough” or caring what others will think. It means making an active choice and practice of being present and active in my life, in my family and in my community, too. We all grow, we change, we learn, we work with what we’ve got and that’s life- and here, whatever the flavor of the day, I bring mine to the table.


If you haven’t, I highly recommend finding a few minutes to watch this TED talk on ‘The Power of Vulnerability’ by Brene Brown; so many insights on worthiness and connection, shame and the fear of disconnection and the ability to show up and make an imperfect, insightful difference.

 

Writing & Progress

15 May

I did something I’ve never done yesterday- I wrote a superquick post for Peggy O’Mara’s birthday and walked away from the computer. It wouldn’t have been such a big deal if it hadn’t been regarding someone I admire so greatly, and if I hadn’t had to make a 5 hour trip to Sacramento and back and unable to check or change a thing in the meanwhile. (If you think texting and driving is bad, blogging and driving is an entirely different level…)

I’m trying to write more. I’ve even started a post to try and collect my thoughts about why writing in itself is important for me and even writing that is taking forever. My last (long) post took painfully long to write and because of that, got intertwined in itself… I worked so long and hard on it, (then LOST the whole post!! I almost imploded…) and then I lost myself in it so many times, it was discouraging and ended up being too complicated and not what I wanted. Ugh.

So I see that my problem is in clinging to how I want things to be- and in so, so many ways. It’s like that about the constant pile of laundry from three kids as much as it is in my heart about not doing it for four. Either way, I have to let it go. (I do NOT know the words to that song, thankyouverymuch… No earworm for me!)

what screws us upIn life and in writing, too… Sometimes I wish that the entire last year of my writing wasn’t solely about losing Patrick. I am more than my loss, but it’s been the first and only thing on my heart when I check in with myself for what seems like forever. I hate that it’s my truth more than anyone, but I can’t deny it- and won’t. But when I don’t write, it feels like I’m losing myself in the days, awash with mundane housework and the fog of routine- and it feels like I’m losing Patrick a bit, too. I know that it’s normal for grief to grow and change, the same as it is (and for the same reasons) that hearts do, which isn’t to say that I miss him any less, but it comes and goes in different waves and different verocity now. I miss life with him, and now I miss that livewire connection to that life and time, too… but the thing about time is that is just keeps us moving on, regardless of where we’d choose to stay- that much, I know for sure.

I’ve been doing better and better managing my life and it’s happenings, which is to say I almost feel like I am starting to have a hold on it again- and not so much vestment in the little things that don’t matter. On good days, I am able to recognize that ultimately my decisions have been my best effort for the time, be it writing or my life choices, in general- and it’s not my business who thinks what about any of it, whether it’s someone wonderful and amazing or an internet troll, we’re all just trying to get by, make ourselves feel better and protect our wounded hearts.

In my post yesterday, I didn’t have very much time and I wanted to just get out my honest thoughts and appreciation before I had to get to my day, and simply sharing a photo on Facebook wasn’t enough for me. In my perfect world, I’d have done a bunch of research, maybe gotten an interview to be super stoked on or at least put in some links to some of her more brilliant works and written something heartfelt and more sentimentally stated. Instead, it was short and the entire middle paragraph is rambling randomness in which I used profanity and got completely sidetracked (who, me?)… But not only did Peggy see and read my post, but commented that my random tirade had made her laugh! If I was to tell my early 20’s motherhood self that I was going to make Peggy O’Mara laugh (and kind of/sort of know who I am!) on her birthday if I just kept writing, I may have just done it for that in itself.

I never know who my writing is going to touch and in what way- especially posts about nothing, like this one. A lot of the times I write, someone writes back to say thank you- and that really makes it worth it.  But beyond gratitude, tiny bits of money here and there or any form of recognition, I find that the days I’ve written what was seemingly nothing end up having the biggest effect on myself.

Like here, when I was trying to get out “30 Days of Gratitude” two Novembers ago, when Patrick was having a hard time and I said,

“Luckily, this isn’t my first rodeo; I can handle almost any crying baby anywhere –and his or her parents– with compassion. This is my fourth baby. No matter the situation; grocery store, airplane, shopping mall, walking down the street, stuck in traffic- I’ve been there  with a screaming baby. It’s heartbreaking and it’s hell. Although my patience has been compared to Mother Theresa’s on numerous occasions, it gets to me, too.

Aside from feeling helpless to “fix it”, I haven’t had time to do anything around the house- the dishes and laundry keep coming… the baby keeps crying. So- I have piles of crap everywhere I have to deal with, which I am not looking forward to- but I also know that I won’t look back and regret not doing the stupid dishes. Dishes are stuff. Patrick is my son. I left the cluttered sink and got us some fresh air. I may even remember the walk we took with him in the Moby, quietly snuggled against my chest. But if not, still, I will know that I was there for him, even when I didn’t know what else to do- and I always will be.”

I had no idea what a gift those words would be to me- the balm it gives me to have that unmemorable day and choice locked into word form in some dusty corner of the internet. It gives me comfort like no other to know full well in boring detail how much I showed my love for Patrick when he was here- and how much I love my other children, too. I love having a way to look back on the minutia of my past life and finding small- or huge- joy there, even in my times of struggle. It helps me to see my progress, too… I can see my own writing and heart change from the work of trying to excavate love and memories from brutal numbness and ache, to finding comfort in matter patterns or balance in some times to recording small memories and getting lessons in vulnerability,  it’s this:

share your story

If anything, I’ve learned how short life is- that if you love something or someone, you make it work with what you’ve got for all it’s worth to you. I may never write anything impressive or win any awards for my rambling digressions, and that’s perfectly fine. I’m here to be me, to show up and be counted. I still want to write more subject-based posts as I did before, but as it is, this is where I am, and hopefully me getting comfortable in my own skin with writing more often will help cultivate that.

One of my favorite authors, Anne Lamott, says in her book, “Operating Instructions: A Journal of My Son’s First Year

“I decided that the most subversive, revolutionary thing I could do was to show up for my life and not be ashamed”

So here I am, showing up and unapologetic for my life and writing, be they random and silly, heartbreaking and poetic, both simultaneously or neither at all. That’s the point in the name I chose: “Progressive” means “marked by constant improvement” and here’s hopefully another tiny hatch in my heart and blog to mark its place- again and again I find life, love and healing in the little things- like seemingly pointless, random, rambling blog posts.

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