Thursday, February 8, 2018

The Kenley Project


A few weeks ago, I spoke for the third time to the second year med students at Lincoln Memorial University / DeBusk College of Osteopathic Medicine on perinatal bereavement.  After my presentation, my sister and I were approached by some students with an idea.  They wanted to use their Solidarity Week ( a week dedicated to compassion and patient care) to fund and create memory boxes for nearby hospitals.  Within days, the idea was in the works - and the students named it The Kenley Project, which filled my heart with so much emotion.   My part of the project was to write a letter to the newly grieving mother.   It took me longer than I would have liked, as I had a hard time getting myself back into that headspace, especially given what month it is right now.  But, I want to share that letter with you now, as well as the link to donate to the project.   I am so very proud of my NInja and all she has accomplished.  


Dear Heartbroken Mother,
I am so sorry you have this letter in your hands.  I’m so, so sorry you’ve had to say hello and goodbye to your precious child and that these last days that should have been spent celebrating have been plunged into darkness.  I want you to know my heart has broken into the same million jagged pieces yours has.  In February 2013, my daughter Kenley was born without breath or beat of heart, and my world changed forever.  As a fellow grieving mama, I wanted to write this letter so you would know you aren’t alone – that there is someone out there who understands the indescribable heartbreak you’re feeling now.  

The hardest thing you will ever do is survive the loss of your baby.   You will feel broken beyond repair, but you’re not.   Slowly, you will gain enough strength to start to crawl your way out of this pitch-black hole you have been thrown in.  Eventually, light will start to seep through the cracks in the walls and you will begin to be able to see again.   Your heart will learn to hold itself up around the empty spots where your baby should be – and you’ll be able to feel more than simply emptiness and pain.  I know right now, you can’t possibly imagine this, but I promise you – you’ll get there.  Not today.   Not tomorrow.  Maybe not even this year.   But, it will happen. 

In the meantime, be gentle with yourself.  Allow yourself to grieve – to feel whatever you need to feel.   Don’t put pressure on yourself to feel anything on any specific timeframe.  Everyone’s grief journey is different.  Well-meaning people will tell you well-meaning things. You may hear things like “Everything happens for a reason” or “Time heals all wounds”   Some phrases will be helpful to you and some will not.  You may feel like people are trying to “fix” you - trying to make it all better.  But, the reality is, you don’t need to be fixed – you need to grieve.   It’s okay to have terrible days – days where you feel so shattered you can’t manage to drag your broken pieces out of bed.  And it’s also okay to have good days – days where you feel ok, where you maybe even realize you’ve smiled or laughed.   We have all wondered if we are grieving “correctly.”  Truthfully, there is no right or wrong way to grieve – and no one can tell you how you should do it. 

You’re going to have to fight.  There is no way around that.  You’re going to have to claw and scratch your way through muck and mud.  You’re going to have to heave yourself over hurdles that may seem impossible.  You’re going to ache and bleed.  You’re not going to feel strong at all – but you are.  You are a champion.  You are a Heartbroken Mother – a fierce warrior broken in grief but strengthened by love.  There is a quote that says “Grief is just love with no place to go”.  You will grieve as much as you love, which is an unfathomable amount.  And while it may feel sometimes like grief is going to break you – it is your love that will sustain you.  Hold on to that love.  Remember that love – nurture it.  Find as many places to put it as you can.  It will never be enough, but it will be something.  Some mamas find healing in performing Random Acts of Kindness in their baby’s name.  Some mamas like to volunteer for organizations or attend memorial walks.  Maybe you paint, or write, or knit, or run – whatever you do, find somewhere for your love to go.  This will probably be the strongest bandage for your heart. 

Your life is now segmented into two parts – the Before and the After.  As we learn to live in the After, it becomes our New Normal.  Your greatest challenge beyond initial survival will be finding your footing in this new world and learning to walk with purpose again.  Life will never be the same.  You are forever changed, and the way you see the world around you has changed as well.  It’s okay if you find yourself unable to relate to things you used to – and if your relationships with others seem different. You’ll learn how to navigate this New Normal.  You’ll learn how it’s okay to not be the same – and how your scars are nothing to be ashamed of. 

You may feel guilty for your baby’s death.  Don’t.  If you had known there was something you could have done, you would have done it in a heartbeat.  Repeat this mantra daily, “It was not my fault”.  It may take you a long time to believe it, but that doesn’t make it any less true.  It was not your fault.  It was not your fault.  It was not your fault.  Your grief will lie to you and tell you that is was.  But it wasn’t.  It isn’t.  It will never be. 

If you ever feel lost in this dark and tangled forest of grief, don’t be afraid to reach out.  There is a huge community of Heartbroken Mothers just like you.  We’ve been where you are and we’ve fought our way to where we are now.  We hurt with you and for you.  Our arms will be open to you whenever you need us.  Even though I don’t know you yet, my heart knows your heart, and I am more than willing to be your crying shoulder or whatever support system you need.  Feel free to email me at KenleyNinja@gmail.com or visit my blog OnePinkBalloon.blogspot.com if you aren’t ready to contact me, but want to feel less alone.  I will be happy to help you find support groups or other resources you may not have the energy to do on your own. 

Even though today seems so dark, I promise the light will come.  Don’t give up, Mama. 

Love,
Kenley’s Mom, Rebecca Wood



Thursday, September 28, 2017

Grief without God

While I don't focus much on it in my writing, nor am I extremely outspoken about it in my every day life, I do not believe in god.  I am what you could classify as an agnostic atheist, meaning although I can't claim to know for sure, I am not inclined to believe there is a god.   I would also consider myself a Humanist, which is less about belief in the supernatural and more about faith in humanity and our responsibility to our fellow humans.  

I came to my beliefs really over the course of my lifetime.  I think all people search for meaning in their lives, and I was never one to find it in religion.  It never made sense to me.  I had too many questions and not enough answers.  I was never angry or upset with god - I just never felt like the concept of god fit in with who I am.     

Over and over, I see confusion regarding how atheists function as people.  How can they be a good person without religion?  How can they find meaning in a life without god?  I've already written a post about the misconceptions others have towards non-believers and a post about how I feel about the phrase "God's Plan".  Yet somehow, I have yet to write about atheism in how it relates to the main point of this blog - grief.  So, here you go.  
This is that post. 

Recently, I read an article that claimed the difference between how an atheist grieves and how a Christian grieves is that a Christian "grieves with hope" and that those without god "sorrow without hope."  I've seen this same mistaken idea in many places throughout the online universe.   I, by no means, "sorrow without hope".   Just because my hope doesn't come in the form of faith or belief in god, doesn't mean it isn't there.  

In the darkness of grief, we look for light - any light - to help guide us through. This is universal.   We all seek out ways to bring peace to a broken heart.  For some people, prayer brings peace.  Holding on to their faith in god and the belief someone loves them and guides them through the dark is comforting. God is both the buoy and the lighthouse in an angry ocean.   I understand this mindset, but I don't follow it.  So, what's my light in the dark?  What keeps me, and any other non-believer, afloat?   Honestly, I think that answer is very different for everyone.   At the beginning, I don't really know how anyone gets through that absolute shocking pain - we just do.  All of us, with or without god, broken to our very core, go into survival mode and for the longest time, we are alive but not living.  We eat, we sleep, we cry.  We feel empty and lifeless.  It's when we reach that moment of wanting to live again - of wanting to try to feel something more than blinding pain -  where the differences in grief manifest.

As a non-believer, I did not find comfort in faith in god.  I didn't shun it, it just wasn't part of my thought process.   A month after Kenley died, my first real act of healing took place when I volunteered for the charity that supplied her memory box.   I spent time with other women who had lost babies and I created bracelets to wrap around the wrists of teddy bears.  I helped pack the memory boxes with important items to help parents memorialize their child who will never come home.  This afternoon was the first step in trying to make meaning out of what had happened.  

For me, my hope comes not in the form of religion, but in action. My hope is that I can bring positive change to my life through the things that I do.  When I DO something to make a difference in the world around me, I feel connected to her.  I feel like I am making her death mean something. Grief is work.  Anyone who says it's not has never done it.   I worked hard to arrive at the place where I am now, and the road is long and treacherous.  So, I do whatever I can to make an impact in her name.  I volunteer.  I write.  I carry out Random Acts of Kindness.  I give presentations.  I attend Walks of Remembrance.  I run.  I do whatever I can to bring some light into my darkness and to walk this path with as much strength and grace as I can muster.  

Obviously, taking action isn't unique to non-believers.  I think most grieving parents, religious or not, seek out a way to honor their child.  I have many Christian friends who head charities, run support groups, or write blogs and articles.  The only difference between what they do as believers and what atheists do is that they do it while believing in god.  Their charity may have a religious theme.  Their support group may pray before meeting.  Their blog may reference their faith.  But, the purpose and the end result is the same.  Our children are remembered and our hearts find some peace.  

I think many people may think atheists grieve without hope because we lack a belief in the afterlife, therefore we have no hope of seeing our children again.  Everyone has their own way of coping with the finality of death.  For me, endings are comforting.  When I was in elementary school, I remember being terrified of the concept of eternal life - even one in paradise.  I imagined this beautiful expanse of pink, like a sun setting into infinity, and my stomach would drop and tingle in fear as I thought about how that would go on forever and ever and ever and ever and ever and ever and ever and ever.... so I rarely allowed myself to think about it.  As I grew into my mindset as an atheist, the idea of life ending at death actually settles me.   I imagine it being like the time before we were born; we are conscious of nothing and so nothing matters to us.  For me, I feel that knowing I won't see Kenley again is easier than thinking I might.  I'm not hanging my feelings on something that won't happen until the end of my life, and I'm not having to envision her somewhere without me.  I mean, I would do anything I could to have her in my arms again, obviously.  But, that's not the cards I've been dealt, so I play the best I can with the ones I have.

A popular piece of writing in the atheist community regarding death is called "You Want a Physicist to Speak at Your Funeral" by Aaron Freeman.  

"You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.

And at one point you'd hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.

And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.

And you'll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they'll be comforted to know your energy's still around. According to the law of the conservation of energy, not a bit of you is gone; you're just less orderly."



While religion has never really made sense to me, science always has.  I love the fact that energy can't be created or destroyed - only changed in form.  I love thinking about how all of our atoms once came from the belly of the beginnings of the universe, swirling in a cosmic soup that would one day become galaxies - and how, long after our consciousness has ended, those same atoms will find their way back into the stars.   Right now, the body of my child is in the form of ashes in a pink ceramic urn.  Millions of years from now, when Mother Earth has breathed her last breath and our Red Giant sun engulfs our planet, my baby's atoms, along with mine, will return to the universe - and to each other.  To me, that is beautiful.  

Despite what some people may think, Christians and Atheists don't really grieve all that differently.  We all love and miss our children terribly and we all do what we can to help ourselves get through our day.  We all need hope and, if we are lucky, we all find it in something.  Maybe it's found in the belief in heaven and maybe it's found in the power of stardust.  Either way, we are all just humans doing the best we can not to hurt as we live our lives on this spinning sphere.




  

Friday, March 3, 2017

Kenley Ran


My half marathon weekend is over.   Kenley Ran!  My official time was 3 hours, 22 minutes, 48 seconds.    I have already signed up for a 10 mile race in two weeks to help me qualify for a higher corral next year because I am apparently a runner now.  Who knew?

Friday, February 24
Our weekend started Friday morning.   Mike got home from work (ah...the joys of working nights!) and we headed to Orlando around 8:30.   We arrived at Port Orleans Riverside Resort and found my parents' room so Mike could sleep since we couldn't officially check in until 3.  Even though I am fairly local,  I love staying on Disney property. Disney does such an excellent job maintaining a sense of relaxation and fantasy in their resorts.   Our building looked just like the mansions in the New Orleans Garden District.   

While Mike slept, we went to the Expo to register and look around.  

 


Arriving at the Expo, I was immediately overwhelmed.  It was enormous and full of people - not to mention this was the first official moment of Kenley Running.  I teared up several times before we even got inside a building.   In order to register, we entered  gymnasium sized room where the entire length of a wall consisted of registration booths divided by bib number.  I was 13655, which put me in corral 0 - two corrals from the end, unsurprising for a first race.  
To get to the vendors, we had to walk out of the giant registration building and into an even more giant building next door.   



The place was swarming with people and there was a literal buzz in the air.  Booths snaked up and down the expansive room.  There were vendors selling compression socks, hairbands, protein snacks, earbuds, running skirts, shoe inserts, race tiaras - you name it.  If it was associated with either running or princesses, it was there.  And it was amazing!   

As we walked down one aisle, my mom pointed to a booth to my left and said "There's Jeff Galloway."  I looked over and there he was - the man in my ear for the last eleven months.   We walked over to meet him.  I told him about Kenley - about why I run and about how he has helped me accomplish what I always thought to be impossible.   He told me how running really helps with hard emotions like grief and he said he was proud of me for persisting.   "You're doing it!" he said with a smile and a hug.   Really, he is the nicest man. 




I left the expo with a green sparkly headband, some new earbuds for my strangely small earholes, and a new grasp on just how close I really was to my goal.  

The rest of the afternoon was spent getting settled in to the hotel and getting organized for my sister's Florida baby shower that evening.  

Saturday, February 25: Kenley's Birthday
We all wore our specially made Mickey ears to commemorate the occasion.  
                            
                            
     

We woke up bright and early to start our day at the Be Our Guest restaurant at the Magic Kingdom.  Knowing how coveted and hard to get these reservations are, my sister made them in October.  Because of them, we were allowed to enter the park before opening, which was pretty awesome.  There's nothing quite like having Main Street mostly to yourself.   We ate a hearty breakfast of meats, cheese, and pastries and headed off to try to ride the Seven Dwarves Mine Train before the crowd.    As we were walking to the entrance of the coaster, what looked like a giant tour group came racing around the corner and slid into the line before we could get there.   It was a giant snake of people that seemed to have no end - and we immediately realized we had missed our window.  The park had opened and the crowd had arrived.  The wait time jumped from 5 minutes to 90 in a matter of seconds. So, we hopped across to the Adventures of Winnie the Pooh instead.   

Our day was full of family, food, and fun - mostly because of my sister's meticulous planning skills.   We ate lunch at the Crystal Palace and Piper had a blast meeting her favorite characters from the Hundred Acre Woods.

                              
       

Towards the end of the day, I felt the familiar twinges around my eyes that signaled a migraine.  I am prone to them anyway, but I always get one the day after Kenley's birthday.  I suppose my body must have known I couldn't have one on race day, so my yearly migraine came early.   I didn't get to go to dinner with everyone else.   I tried, but the restaurant was too loud and I knew I wouldn't make it.   So, while my family ate dinner, I laid in my hotel bed, trying to keep myself from spinning into oblivion.  Around 10pm, I had slept enough of it off in order to stand upright and I gathered my things together for the race.  I laid everything out in the bathroom so when I started getting ready at 3:15, I wouldn't wake up Mike and Piper, and I went back to bed, hoping the last traces of it would be gone in time.  

Sunday, February 26:  Race Day!
In case you didn't know, 3:15 isn't even the butt-crack of dawn.  It's more like the small of the back of dawn. It's early!   I woke up feeling a little fuzzy headed with some migraine residue still clinging to the back of my eyes, but I could tell it would fade away as I got myself moving. I put on my race outfit and laced up my shoes.  I straightened my lace charms with Kenley's pictures on them, grabbed the oatmeal I had made myself with the coffee maker, took a puff of my inhaler, and out the door I went.   
  
      
My mom and brother-in-law were running too, so I met them at their rooms to walk to the bus. My sister was supposed to run, but got pregnant almost immediately after registering in July, so that was a no-go.  Instead, she and her belly headed to Main Street to cheer us on.

There were over 24,000 runners registered for the Princess Half, so the traffic to get everyone there was pretty intense.  Our resort is almost directly next door to EPCOT, yet the bus ride took a good 30 minutes.  Stepping off the bus, I could immediately see just how popular this race is.  



We found our corral - and wouldn't you know it - it was marked with a pink balloon.   Well, hello there, little one!  

                   
  

Corral A was released first, followed by all the rest.   With each corral release, they shot off fireworks, which served their purpose of jazzing everyone up even more.  As each corral was released, the crowd moved up, and we inched closer to the start line.   Finally, it was time for Corral O to go.   My heart beat frantically in my chest.  I fumbled around to get my music started and my phone into my flipbelt in time.  It had been an hour since the first corral left the gate, so the sun was starting to rise and the sky was changing from purple to pink to blue.  It was just after 6:30 when the announcer screamed to Corral O, "Rrrruuuunnnners get rrrrreeeaaadyyyy!".   Fireworks exploded over the glowing pink start line and we were off.   Kenley was running!

        


The size of the crowd was enormous.   Tutus were everywhere - and everyone was within elbow distance of everyone else.  As we got further from the start, it thinned out a little in places, but not entirely.   There were times when I was supposed to be running, but couldn't because the crowd around me was too thick.   Although that was frustrating, it was still an amazing race.   Each mile marker consisted of a rectangle about 8 feet high and 3 feet wide with a Disney character on the front.  Inside, there must have been a speaker because all of them played songs related to the character.   Mile Marker 4 was Peter Pan, so I made sure to stop and get a photo.



All along the course were character stops and photo ops.   From Jack Sparrow to Malificent to the Genie from Aladdin, there were plenty of opportunities to interact with a Disney icon.   I didn't stop at any of them.  The lines weren't super long, but I also knew I wasn't super fast and I wanted to finish on time.   (maybe next year though).   

The course ran from EPCOT up to the Magic Kingdom, through the park and around the castle, and back to EPCOT.   My sister was on the corner of Main Street just as we entered Magic Kindgom, holding up a #RunKenleyRun sign and ringing a cowbell.  

My mom and I got a few quick photos in front of the castle before we were on our way out of the park and back down to EPCOT.  



I had expected the race to be extremely emotional.  I was worried I wouldn't be able to run because I'd be crying so hard.  But, honestly, I was just in the zone.  I listened to my music.  I talked to my mom.  I walked.  I ran.  I took in everything around the course.  I had a great time.   There's so much going on at a Disney race, you can't help but have fun.  Sure, there were moments when the magnitude of what I was doing hit me right in the face, when my heart swelled to wrap itself around the place she is missing, and when my love for her was so great, I felt like she was radiating out of me.  But, the amazing part was - none of it was sad.   I wasn't sad once - at least not in the sense of what I have been.  Clearly, sadness comes with loss - but in the three hours and twenty two minutes I was running for her, I felt so many more emotions than sadness.   I felt the joy of being her mother, the pride in accomplishing a goal in her memory, the excitement of running my very first half marathon, the support of those I knew were tracking me.   I felt the most complete I have felt in four years.  I almost felt whole again.

The last mile or so was hard.   I had to walk more intervals than I ran.   As we looped back into EPCOT and passed Mile Marker 12, I felt so much relief I was almost there.   We circled around Spaceship Earth, down to the World Showcase, and back again.  At 13 miles, we passed a gospel choir.  Almost there!   I turned the final corner and there it was - the finish line flanked by grandstands full of cheering friends and family.   

A year of training - a year of taking my non-runner self out on runs 3 times a week - a year of researching interval training and running nutrition - a year of shelling out hundreds of dollars for workout clothes, shoes, arch support inserts - a year of focusing on challenging myself in the name of my little girl  - had all come down to this moment.   My moment.  Her moment.  OUR moment.   I crossed the finish line with my hands in the air and tears in my eyes.  

I looked over to the stands to see a small crowd of people in green #runkenleyrun shirts and I waved at my family.   Following the crowd, I walked over to collect my medal - a gold bell with a rose in the middle to go along with the Beauty and the Beast theme - and a box of post-race snacks.  My mom and I walked around through the runner's section and into the area to meet family where we met up with Mike and Piper, my dad, my sister and her husband, and my friend Nanci who had come to watch me cross the finish line.   I felt victorious.   And exhausted.



We all went back to the hotel for baths and naps.   Once we were clean and rested, we spent the afternoon at EPCOT.  I wore my t-shirt and medal with pride - as did many other runners.   



For a lot of people, this weekend was a fun-run, something they do every year with their friends.   For me, this weekend was both the start of a new tradition and the end of a way to think about my daughter.  Since the day she was born, an emptiness surrounded her memory.  I carried her for her entire life and I left the hospital without her.  It often felt like I left her there.  For four years, that hospital was where I held her memory.   I only knew her outside of me inside those walls, where she was still and silent in my arms - and so it's been so hard to separate Kenley from her death.   Thoughts of her were memories of me holding her in that hospital, of me crying and empty and broken.   Even in my writing and actions in the months and years after have been focused on stillbirth - on death.  For four years, the focus has been on the fact my baby died.  And, oh, how that is so very draining.  

This weekend (and the year leading up to it) changed that focus.   I worked hard for a year to push my body to do something amazing.  I worked hard for a year to transition Kenley's memory from a hospital room to a finish line.  And I did it.   She isn't still and cold in a bassinet.   She is alive in my beating heart.  She flows in and out of me with my breath.  She travels miles and miles on the soles of my shoes.  She is no longer something my body failed to do - but something it achieved.   She is an accomplishment, a victory.




I will always struggle with grief because this is the journey child loss sends you on.   I will always miss her and I will always love her.  I will always, always wonder who she should have been.   But, I will no longer let her memory be encased in death.   As long as I'm living, my triumph she'll be.