and I still keep count
ever increasing numbers
they’ll still never surmount
or even touch
the aching vacancy
that I hold
it’s just a silly way
to find some sense
within my soul
because your ab-sense
is exactly that
away from logic
fact or study
away from any truth
I miss you, buddy
and that’s the truest verbage
I can craft around that bubble
the shining fact
that I can excavate
from all the rubble
of the world
that I once knew
that I held dear
where I could hold you
not this one
where it’s all that I can do
just to uphold the who
you might have been
and who you’ll never even
get the chance to be
where the only way I hold you
is in silly poetry
where I can wrap my
words around you
instead of loving arms
carving verbal shapes
that hold the sillage of your charms
it’s still alarming
when I wake
without your face
without your breath
and the smell of your sweet head
here in my bed
and in it’s place
I just have
in growing amount
and I still keep count
What I meant to say
when I said all those words
is that I’ll keep choosing you
and time’s proven it true
and I’m not going to be the one
who couldn’t ask
or couldn’t tell
This won’t slip through the cracks
because it’s in the centers
of who I am
nuclei to some of my favorite
positive and atomic states
and though my heart’s fractured
and missing some pieces
you are the kintsukuroi
in all but my most broken spaces
Even the times I fall apart
when the saturation
of my heart and mind
comes streaming from my eyes or lips
moments I wish never existed
and am forever bound to have
I am still more
centered, peaceful, and capable
for knowing you
and the me I am
when you are near
Some parts of of my heart
will always be
broken and aching
and can’t be filled
because that space
and whom it belongs to
is part of that person I am
have fought to become
and am fiercely protective of
I am grateful and honored
you not only help me
hold that space
but make room in yours, too
Though I’m not yet
steady on my feet
I’ll keep practicing
all of the steps to be
and if you can wait for me
to climb out of my cocoon
and not pull me too soon
when I am done flying through
where the missing part of
my heart is
you will be
the first place I land
When my father died, there came a cold, permanent reminder that sometimes, life is too short, and that death can come far too unpredictably, too soon. With Patrick’s death came the reality that my best, most difficult, lengthy, impassioned efforts that I couldn’t possibly care more about or pour more of myself into can be spirited away- without warning or reason. Watching something slowly crumble, be it a life, a relationship or situation, is different entirely than flicking on a light switch and taking in the fact that it’s vanished, and the life that was happening in my head and heart did just that, all in a single moment.
Yes, my gratitude for the little things in life that come about has compounded after his death, too- being hyper aware of this new reality means taking extra time and love to invest in my children’s lives, and in the lives of my friends. But it also means that every time I say good bye to anyone, I’m saying it forever. To my children when they play outside, when my sister or friends when we part company- I’m hyper aware that today may be their last, or mine.
Serendipitously, I came across this video today where Brene Brown explains this strange paradox I seem to be living in, where I’m in love with every moment, but because I know they’re fleeting and I end up grieving for the present that I’m loving, too. It’s as exhausting as it sounds, if not moreso.
Oprah’s holding the book I’m currently reading, Daring Greatly.
So there’s a flip side to all of this extra love, passion and gratitude I have in my life… I pour it out 100% because I know for a fact I’ll never have the same chance to again, and what it feels like to look back on the times I kept my love to myself because I was hurting or afraid. But this outpouring of love still contains a level of disconnect for me- I send it without expectation or attachment so that nothing and no one can hurt me again.
Except I’m finding some ties I can’t help, and those terrify me the most. The first and foremost of those attachments is to my earth-walking children. I hate to say it, but part of the reaction that, especially initially, happened in my grieving process was to pull away from everyone, my children included. Loving each of them so incredibly much, I realized, means that I am at three more times the potential for the ache I will never stop feeling in every quiet moment of my life- and that type of heartbreak can just break a person all the way down, six feet under.
SUDC can happen in children up to nineteen. NINE-FUCKING-TEEN. (My oldest just turned 13 last weekend, but that’s for another post entirely.) For all I know, when my children go to sleep, they’re not going to wake up, that I have some cootie-infested gene that makes my babies drop dead. Unfortunately, you can’t say, “What are the odds?” or “That couldn’t happen to you!” or anything of the like because it can, because it has.
I can count the number of times I’ve slept through the night since the earthquake on one hand. It’s not that the earthquake itself was terribly frightening, but when my 10′ picture fell off the wall and I realized that the windows and floor were really shaking, I panicked. The thing is, the logical part of me that tries to rationalize with statements like the ones I’ve listed above doesn’t count anymore. When you’re sitting in an ambulance passenger seat, rocking yourself to the mantra of “Please don’t take my baby, please don’t take my baby, please don’t take my baby, my baby… my baby…” and then someone looks you in the damn eye and says, “I’m sorry. There’s nothing we can do.” across an operating room table, all that sunshine and fluff goes up in smoke. It can happen. It just did.
I’m sorry if that’s rough to hear, but that’s my reality- and my reality found me thinking, “Please don’t take my babies.” again during the earthquake, with the coupled reality of remembering all too well how it turned out the last time those words were repeated in my head. And so I can’t sleep. And probably have some form of PTSD, really. I realized in my overthinking hours of the morning that I was lying there at the ready, trying to somehow protect my children with my love, with my vigilance, with my preparation for disaster… and all of it is futile, imagination put to it’s worst use. Yes, California is actually due for a massive earthquake soon, (which in NO WAY helps me to know) but I can’t limit my kid’s childhood because I’m beyond anxious that I’m going to lose them during it.
I have ties to friends that I can’t (and don’t want to) help that terrify me, too. Most of the friends I have that are closest to my heart live states away, where I can only see them on occasion. I love them fiercely and fear that bond nearly as much, sometimes more, because it means part of me is vested in both caring about their happiness and their happiness with me, and that I know firsthand how it feels to be separated from that bond. I’ve even caused that hurt on purpose to myself because of that knowledge, to try and, as Brene puts it, “beat vulnerability to the punch”, though I didn’t realize it at the time.
There have only been a couple of friends I have ever consciously separated myself from, and they are both people whom I have known for years and am deeply connected to- and ones I felt I couldn’t live through hurting me. So, I hurt myself first by keeping myself at an unreachable distance, until I realized years later each time that those deep connections can’t be severed, that I was hurting us both in denying our attachment to each other. Though I felt safe(r) at a distance, I had a hole in my insides in exactly their shapes, and even after my silence, they were both still willing and wanting to be there, because it turns out they had Julie-sized puzzle pieces missing from their insides, too. Some people walk into your heart and just fit, and I’ve found that it’s worth stepping beyond old boundaries into vulnerability to let them.
And so I’m desperately trying to work myself through the absolute mind-bending freak out it is for me to try and form attachments again. Kaya is with me constantly and is the best form of constant, (mostly) quiet companionship that I could ask for. She helps ease my anxiety tremendously, as do many of my friends both locally and online; not the least of which is Amy of Zen Parenting, who has put together an online auction ending tomorrow, 10/24 to help raise funds for me to have a car- because even my car recently, suddenly and unexpectedly died, and while I was on the same freeway to Sacramento that I took on Patrick’s last day, to boot. (Do you see why part of me is just waiting for the other shoe to drop?)
The thing is, I can look at losing my car and see something I’ve lost, or I can look at the amount of love that has been sent my way because of it- it’s a choice… I would give up everything I have now and more for Patrick back, for even an allotted amount of time- I’m open, Universe- but in smaller scale situations, even ones like being stranded in the middle of nowhere with a steaming car, (which is absolutely a first world problem) because of friends like Amy, (and Megan, Ruthie, Jes, Genery, Matt, Laura, and Spencer) today, when it comes to looking at the loss or the love, I can choose the latter.
Because of you
whom my world can do without
and whom I would miss
if I couldn’t find
so I connect
Because of you
I can take a breath
or ten thousand
knowing full well that
time is the only gift we can truly give
and I give it freely
Because of you
I know what can wait
and what just can’t
Because of you
I know in my deepest, darkest parts
even the ones that rage and burn
the ones that will never understand
and the ones that will always seek to
that it is better to have loved and lost
than never to have loved at all
and I love with every space in my heart
Because of you
my heart is a compass
even when damaged and broken
I know where my treasure lies
and I cherish it always
Because of you
I’m sure every good bye will be my last
and I’m terrified
of everything I love
because I know full well
what it means
to have it ripped away
But if I’ve learned anything
because of you
it’s that it’s worth it
For more of my poetry, click here.
How can one love be so wholly
strength and kryptonite?
One single candle lit
that suddenly makes the world seem light
Yours is the hand I hold
I need to find the strength to try
the questions posed by fear
are always answered in your eyes
I’ll jump off every ledge for you
and stretch my every edge
not in some grandiose, magnificent way
but in the every day
fumbling places I change
in the way my heart catches
when I hear your name
and constantly burns
with concentrated flame
How boundless our connection
all the tiers of my affection
Every way my life has turned
ends up in your direction
I can’t do anything but love you
my heart beats a battclecry drum for you
Sometimes it’s all I hear
throughout all the ache and tears
the other side of facing fears
this bond grows with age
though you, love, never will
My angel, silly sunshine,
my sweet dust of star
I’ll be there, wherever it is that you are
even at a distance beyond how far
my silly mind can comprehend
we always meet again
and every time we do
it’s always the same
and it’s that I love you
and that I will see you
and you’ll see me, too
and that will count for everything
*I saw this photograph my very talented friend Neight (who filmed the Sing for SUDC video for me) took after starting to write this, and the sea, stars and cliffs are exactly what my love and grief feel like right now. <3
For more of my poetry, click here.
In the wee hours of the morning
the Peter Pan time
between asleep and awake
your eyes filled with tears
and you cried to me
for reasons I’ll never know
if you were too hot or too cold
had something amiss inside
or something on your mind
eyes that wouldn’t close
change your position
change your clothes
I wrapped my arms around you
heart to heart
I swayed and sang my love
whether balm for your spirit
or maybe both
weary hearts and bodies
It was all I knew to do
and you found sleep
In the wee hours of the morning
I find myself
between asleep and awake
eyes filled with tears
because you’re gone
for reasons I’ll never know
if you were too hot or too cold
or had something amiss inside
I can’t get off my mind
eyes that won’t open
I change positions
put on my robe
wrapping it around my
I sway and sing my love
whether balm for your spirit
or maybe both
weary heart and body
it’s all I know to do
because I can’t sleep
For more of my poetry, click here.
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.
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:
Intrahepatic Cholestasis of Pregnancy (ICP) or Obstetric Choletasis
Anxiety and Depression/Suicide Prevention
Sensory Processing Disorder
Apraxia of Speech
… 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.
Off you go, then!
I can’t wait to hear you.
If you’re having any hesitation, take it from AFP.
Keep track of Sing for SUDC posts on:
And see it up on the SUDC Program homepage under “Get Involved” tab here:
It 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.
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.
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, and soon after that I lost contact with a near and dear friend of mine after learning of an absolute betrayal.
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 over 8 short months, 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.
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.
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.