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Daydream

4 Mar

I want a giant iron
to smooth over all the wrinkles
in this wretched system
a psychic microscope
all must pass through
who enter those gates
from any angle
a deflective umbrella
made of Care Bear stare
to hold over those I love
to protect them
when it all falls down
and cupcakes to give
as I sit down beside them
and say wow
it’s bad out there
yet all I can do
is write

I want to tell her
I know how sorry you are
that you never meant
for it to be
this way
for her to know
that I still see light in her eyes
when she looks at that child
that I see she is broken
and I know how it feels
to really know
that life is kind of like that
and then get up
put that in your pocket
and keep moving
because you can
you can
you really can
I promise
and we’re all here
waiting
maybe for truth
and apologies
but mostly for
the woman
you’ve been hiding
but all I can do
is write

I want to tell him
I’m sorry, I’m so sorry
I was such a shitty teenager
that I didn’t check my oil
that I learned integrity
gentleness and generosity
from you
and I can tell
your mother misses you
like I miss my own son
and I hope
in some way
that you two
have some sort of
magnetic soul tag
from how deeply
I will always love you
like a bat signal
on another plane
that brings you
to a place where my love
touches where you are
together
and for you to know
as deeply as I feel
how much
you are loved
and missed here
where all I can do
is write

Fair

4 Feb

Ocean_City_Ferris_Wheel

I took you there
to celebrate the harvest
pumpkins and hayrides
the giant Ferris Wheel
I can still feel you
pressed against my chest
and see your bright eyes
taking it all in

It was your complexion
milky
like your sleepy smile
downy fluff hair
flushed and full cheeks
delicious thighs
and eyes
that hold the stars
and my heart

It’s what is isn’t
that you’re not here
and I’ll never know why
It’s what it’s not when
I sleep alone
when my breasts still long for you
when any baby cries
It’s what it’s not
that I couldn’t
protect you
and still not know
what from
What it is
is exactly
what life
isn’t

The Unrest

2 Jan

Some days
all I do is miss you
it comes out of the blue
like a star fell and burned
straight through my heart
and it’s all I can do
to get through the day
without your arms
reaching for me

and I miss the feel
of each individual finger
of your left hand
upon my chest
the way my left shoulder hurt
because that’s the side
you liked best
and I feel like
I will never rest again
even in my sleep
I’d never dream reality
would hold this type of
nightmare for me
when I wake each day
I never prayed
your soul to take
to anyone
or thing

Some nights
all I do is miss you
I miss the curves along your face
the smell of the triangular shape
between your jaw and ear
when I pulled you near
the way your eyes
were little twinkling sapphires
that I’ll forever chase
and you will always be the name
that’s firmly held between the places
where my heart skips a beat
i carry you with me
laying in the space we shared
how I am suffering
sweet child of mine
without you
in so many more ways than
I thought were possible

Soapboxery for the New Year

2 Jan

It’s been 98 Fridays with a broken heart, 37 days until it’s been two years. I said that on Facebook this morning, and watched my (overall Facebook) likes fall by a handful- the kind comments have followed, but the former always strikes me. It seems like every time I post about losing Patrick I lose people, so let me just get this out of the way:

If you can’t deal with the fact that I occasionally post about being sad because I suddenly lost my 14 month old for no reason, GO THE FUCK AWAY RIGHT NOW.

…but don’t go without recognizing the fact that you have that privilege, and what a huge one it is. Don’t go without remembering that SUDC = Sudden Unexplained Death in Childhood = no cause, no cure = there’s nothing you can do to protect or prepare yourself for it.

Trust me, you are learning about this the easy way.

Grief is far from my only life or subject matter, but unfortunately for me, it’s become a part of who I am because Patrick is a part of who I am, and nothing will ever change either of those things. If there’s a singular thing I wish to impart on the world for Patrick’s and my stay here, it’s to encourage people to be grateful for every. damn. day, and to be kind to your children and each other.

One of the only things that provides any balm for me about Patrick’s life is that I spent every day loving and appreciating him (and continue to do so with my other children) because I learned that lesson in a lighter way after losing my father to Melanoma in 2010. I’m grateful I left him intact, grateful he was still breastfeeding, cosleeping and being worn every day, grateful that he was close to my heart in every way, every day of his entire life.

Because of my PTSD & SUDC, I evaluate every decision with “If I (or ____) died tonight, would I regret this?“, which is both a blessing and a curse; I get incredibly soaring heights of anxiety, but I also am pushed to find the courage to show up for my life and share my heart with others, even when it’s terrifying… it doesn’t make the latter any easier, but I go to sleep at night knowing I’ve said my piece and done my part. I always think about how need to write more. This is me trying.

Anyhow- if you can’t handle witnessing not made-for-TV grief, the fact that I occasionally say fuck, (and have an album just for swearing, actually- and one on cannabis, too) that I’m a feminist, humanist, science-loving hippie-nerd that writes sporadic, random poetry and posts, and embraces a coffee addiction open-heartedly: peace out. *If those things happen to appeal to you, consider following my blog (via the link on the top right side of the page on desktop and after the comment form on mobile)  if you haven’t already.

I’m here for authenticity, not approval. I’m here to learn and improve myself and the world around me. I’m here to hopefully lend some perspective and to share what helps me with my own, to keep my son’s memory alive, and to promote awareness for the SUDC Foundation- and that means I will never stop talking about them- and the other things that matter to me- ever.

Okay, enough soapbox for awhile. Now, go hug your kids and remind the people that you love in your life how much they mean to you. Dammit.

SUDCLOGO*If you feel like helping SUDC families, please consider participating in the Sing for SUDC Challenge, or donating to the SUDC Program here.

95

13 Dec

95 Fridays
and I still keep count
ever increasing numbers
they’ll still never surmount
or even touch
the aching vacancy
the numbness
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
except goddamn
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
every morning
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
95 Fridays
in growing amount
665 days
and I still keep count
because
you do

Forboding Joy

23 Oct

Yin Yang ClockTrigger warning: child loss

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.

Priorities

10 Oct

Because of you
I know
whom my world can do without
and whom I would miss
every
single
day
if I couldn’t find
so I connect

Because of you
I can take a breath
or fifty
or ten thousand
and wait
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
especially yours

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.

What Counts

3 Oct

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
each time
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
I’ll prove
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
since you
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
through years
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.

What I Can Do

25 Sep SingforSUDCChallengeImage

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 mine
or maybe both
weary hearts and bodies
It was all I knew to do
to help
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
broken heart
I sway and sing my love
whether balm for your spirit
or mine
or maybe both
weary heart and body
it’s all I know to do
to help
because I can’t sleep

 

For more of my poetry, click here.

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.

As a bereaved parent, I can’t help but compare the awareness and donations for the SUDC Program, which not many people are familiar with- 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 make your post public if you’re using Facebook, and to use the tags #singforsudc and #useyourvoicechallenge and the link (http://www.sudc.org/GetInvolved/Donate.aspx) in your posts so that others know what to do and where to donate. 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.

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:
http://www.sudc.org/GetInvolved/SingforSUDCChallenge.aspx

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