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.  

A PDF of this letter is available for distribution here.  You can also download the unofficial recognition of birth included in the memory boxes (because stillborn babies don't often get an official certificate) here.

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

Star Legacy Awards

In the beginning of December, I received an email from Lindsey Wimmer, founder of the Star Legacy Foundation.    She informed me I had been nominated for three Star Legacy Shining Star Awards, one for Stillbirth Awareness, one for Stillbirth Education, and one for Stillbirth Advocacy. I was nominated in three categories where all the other nominees were MDs, PhD's, RN's or CEOs.   I immediately searched the email for words like "LOL" or "just kidding"...maybe even a "Not!"   But, there weren't any.     I wondered if there had been a mistake, and I figured my lack of qualifications would come into play when voting began, where I would simply be weeded out from the more deserving, well-qualified candidates.   However, mid January, I received another email.  I was the winner of the Stillbirth Education Award.  Um, excuse me, what?   Not only was I the winner, but she was excited to meet me.   Really?   Me?     I didn't go to med school or nursing school.   I don't have any fancy credentials to tack onto my name. I'm just a mom with a blog.   Really, when it comes down to it, it's just ONE blog post.   I didn't head up a research project.   I didn't start a clinic.  I didn't create a program at a hospital.   I just wrote a letter and followed its ripples. 

From the very beginning of all of this, I have always felt uneasy.  I don't take compliments well.   I always look for external reasons for my success, and it's always been difficult for me to feel worthy of praise.   My sister says this is called "Imposter Syndrome", where, despite your own hard work and actual deeds, you still feel like a fraud - like you're going to be "found out" and exposed for not being as great as everyone has been saying you are.   I have this pretty bad.   I have all of my life.  And I was being forced to face it head on because I had been asked to fly to Minneapolis to accept my award.   I thought seriously about not going.   Just, letting it pass by and hiding under my sheets.  My family refused to let that happen.  I decided if I was going to go, I would need someone to go with me.  So, I asked my sister, Allison.  In case you don't already know this, my sister is pretty hardcore.  She's a decisive, take charge kind of gal, and she was the perfect person to take with me on this trip.  She has been my and Kenley's most outspoken advocate since Day One, and it was really only fitting she come with me.   After all, it was at her request I even wrote the letter in the first place.   

So, last Friday, I flew three and a half hours from my home in central Florida to Minneapolis, Minnesota. Going from a subtropical location to The Great White North in the middle of February was quite a shock for me.   (Leaving the airport in Minnesota, I noticed the cars in the parking garage were all coated in a white dust.   It took me longer than I care to admit to figure out why.  Hello....Florida Native!)  Fortunately, Allison had given me a knee-length parka rated for the coldest winter temperatures, so I was all set.  I pulled the faux-fur-lined hood over my head, shoved my hands in the pockets, and I was good to go.   She had arranged for a town car to take us to our hotel, which was nice.   My name was spelled out on a sign for me to see as I walked to baggage claim because she thinks of things like that.

The hotel was less than 15 minutes from the airport.  Getting out of a Suburban as a first-time parka wearer was probably a hilarious sight to see, but I did it.   All around the hotel, pushed up in piles from the pavement, were what looked like the tops of giant snocones - minus the colored syrup.   What was this strange substance?   Allison infomed me it was snow, and boy was it cold.  I propped up the wooden K I brought with me to get a picture and then uploaded it to Instagram and Facebook with a #mysterytrip hashtag.   

After we settled into the hotel, we decided to head over to the Mall of America, which was about 10 minutes away in Bloomington.  Allison whipped out her Uber app and Frances arrived about 8 minutes later to whisk us away in his Chevy Volt.  I'm not sure what I was expecting at the Mall of America.   I knew there was a rollercoaster inside and that it was really, really big.   The mall itself was four stories of stores that followed a circular loop.   Most of the stores were just regular mall stores, several on repeat.  There were about three Claire's, two Victoria Secrets, and three hundred and sixteen shops that sold baseball hats.  As far as shopping was concerned, the mall was pretty standard, just in a larger scale.   The unusual part was what was in the middle of the loop.   Starting at the first floor and going all the way up in the center of the mall was Nickelodeon Universe - an indoor theme park complete with at least two roller coasters (one with spinning cars), a merry go round, a ferris wheel, and other miscellaneous rides and games.  Giant Lego transformers and dragons wrapped around the entrance.   There was even a Teenage Mutant Ninja Turtle ride that whipped people around on a giant nunchuck.

 After the sun went down, music blared through the center of the mall and all the rides lit up to the beat.   If I hadn't grown up a stone's throw from Disney World, that would have probably impressed the heck out of me.    That's not to say the mall wasn't a great time.   It was.   It's one of those things that you just have to do if you're in the area.   We finished up at the mall and got back to the hotel around 9:30. I had good intentions of staying up Slumber Party Style with my sister, but those good intentions went right out the window when I fell asleep watching TV  after ten minutes.   I'm an animal.

Saturday morning dawned sunny and below freezing....because,  you know....Minnesota.   Allison and I ran some errands to get ready for the gala that evening.  As we did, I started to realize what was actually happening.   I was 10 states away from home, in 8 degree weather and wearing a parka I clearly didn't know how to operate, for the sole purpose of accepting an award I was convinced I had won by mistake.   I could just picture myself giving my name to the people at the entrance and being turned away because my name wasn't on the list.   Who did I think I was anyway?   I spent most of the day convincing myself that I wasn't a fake and that I hadn't traveled all this way for nothing.    

Back at the hotel, Allison and I got dressed for the Gala, slipping rhinestone stars into our hair for Kenley.  I fastened a new silver K around my neck and put the wooden K in my purse.   With Kenley properly represented, I was ready to go.   Another call to Uber and we were on our way.   

The Star Legacy Award Gala was held at the Green Acres Event Center, which turned out to be a cross between a ballroom and a barn.   It was very cool.    It was getting dark when we arrived, and the front of the barn was lit up with blue lights and the parking lot was covered in slick, white ice, which gave the scene a Winter Wonderland kind of vibe.   I carefully hobbled on my heels across the ice to the door, where the warmth of the inside greeted us like old friends.  A long, thick wooden table sat in the middle of the entry with two ladies holding lists.   Here it was...the moment of truth.   "Rebecca Wood".   Lo and behold - I was on the list.   Allison and I were handed two drink tickets and had our picture taken with the wooden K in front of the Star Legacy backdrop.   This was legit.   

      

We made our way upstairs, where people had already started to gather.  Ladies in coctail dresses sipping wine and men in suits shaking hands.    We found our table and I took a minute to look around.  The room was actually very beautiful.   Wood beams formed an arc in the high ceiling where three massive chandeliers hung from the center rafter.   Along the walls were ecclectic decorations.  On one side of the room, sat an old fashioned upright piano, on the other, a giant white stone fireplace.  Along the back wall hung three brightly colored paintings of cows.  Yes, cows.   They were awesome.   The whole place was very funky country.   

        

The front of the room housed a band and a presentation screen, which scrolled through facts about stillbirth - reminding me and everyone else why we were here. 

        

Take a sip of wine.  "Stillbirth claims more infant lives than prematurity and SIDS combined."   Admire the paintings on the wall.  "The amount of children born still each year is equal to a 747 jet full of people crashing every five days"   Glance around at the crowd.  "Federal Funds dedicated to SIDS research: $17 million, Prematurity research: $298 million, Stillbirth research: less than $3 million."   Realize just how very needed your mesage is.    Hope you are doing it justice.

Allison and I took pictures of the K around the room.   She had the centerpiece at our table dedicated to Kenley, which made me tear up the first of many, many times that night.  As we were milling around waiting for the evening to start, a woman came rushing over to our table.   She put a camera in a bag next to my seat and said excitedly, "Are you Rebecca?  I am so glad to meet you!"   Her name was Shannon.  She is on the Star Legacy Foundation board of directors and she was the one who nominated me.  In all three categories.  She said she couldn't decide where I fit best, so she put me in all three.   During dinner, we chatted about our children.   Her daughter, Savannah, died due to a prolapsed cord, which caused her to get involved with the foundation.  Like many Heartbroken Mothers, Shannon wanted to make a difference in her child's name.   I also talked to the couple on the other side of Allison, Michelle and George, who lost their son Nicholas in 2001, prompting them to start the Angel Names Foundation, which helps families cover burial expenses and also raises money for stillbirth research.   Here's where the world gets really small.   When I was preparing my presentation for the students at DeBusk, I thought I should probably get together a resource sheet, full of organizations and helpful websites.   I searched the internet for those things, and came across Angel Names.  I thought it was a perfect organization to include, so I put it on my resource sheet.  And, here the founders were, sitting across from me at the gala.  

                                        

                                        

As the dinner dishes were being cleared away, the MC called ffor everyone's attention to begin the awards ceremony.   My heart immediately leapt into my chest.   "The first award of the evening will be the Stillbirth Education Award," he said.   Of course.  Of course, I get to be first.  Of course, I don't get the benefit of watching other people go before me to see how they handle things.   As he read the nominees, I took some deep breaths and made sure my shoes were securely on my feet.   "And the winner of the Star Legacy Foundation Stillbirth Education Award is...Rebecca Wood"   I stood up.   The world stopped.   I walked to the front of the room as the MC read my bio where no less than six people were waiting for me.  The beating of my heart pulsated with Kenley's name.   I shook a hand.  I shook another.  And another.  I was handed a beautiful glass award.  I paused for a picture.   And then, "If you'd like to say a few words, we'd love to hear them."   

Man.  I should have prepared.   I honestly have no idea what I said.   I know I said Kenley's name.  I know I said I wrote what I wrote so families like mine would be able to have the memories they deserve.  I know I said how much I hated February.   And, I walked away.   And people clapped.  For me.  For Kenley.   For the message that is her legacy.   As I made my way back to my table, a woman hugged me and told me she hated February too.  And we cried.  And then we smiled because we knew someone else knew what this feels like.   When I got back to my seat, a piece of caramel and chocolate cheesecake was waiting, and I wasn't a fraud. 

         

The other awards were given out.  The advocay award went to an RN at the table behind me who works with families in the area.  I gave her a hug and told her thank you.  I told her she's so important in the lives of the families she helps.  She said, "I hope so" and I told her, "The fact you are here proves it".   And that's when I realized I belonged there too, that I was like almost everyone else in the room.     Someone who just wanted to bring a voice to the voiceless.   I was a mother doing everything she could to make a difference on behalf of her child.   I didn't have a fancy title...unless you count the title of Mom...but I belonged there nonetheless.   

I introduced myself to Lindsey and she told me she loved my letter and video and congratulated me for winning.   We talked about the foundation and how I could help with its cause.   Allison and I are working on partnering with some of her contacts, in addition with some others, to make the letter into a Continuing Medical Education credit, which is really exciting.   We also talked about becoming a Champion, which is basically holding our own Star Legacy fundraiser in our area.   That will be happening in the not-so distant, but -still- kind -of -distant- because -it's- a -big -task, future.   

It was awe-inspiring to be in a room full of so many people making such a difference in stillbirth research and awareness.   A room full of people who cared as much about breaking the silence as I did.  The Star Legacy Foundation is doing great things.  The money they raise goes right to the research facilities and organizations doing groundbreaking work in relation to stillbirth.   A current project is a National Stillbirth Database, which will help organize stillbirths by cause, genetic factors, mother's pregnancy, and other variables.   This can be a vital tool in finding correlations and taking steps to reducing stillbirth in families.  I am so honored to have been recognized by this organization as someone who is making a difference in the stillbirth community.   

Like any mother in my situation, this is all for my baby.   Every word I write.  Every presentation I make. Every award I recieve.  They are not mine.  They are Kenley's.   All of this - every last bit - is because my beautiful raven haired daughter entered this world silent and still.   And, while that breaks my heart over and over and over again, it also brings me some peace.   Good is happening in this world because our children inspire us.  To move forward.  To speak out.  To make a difference.  Every mother and father in this community, whether they are on the forefront of change or not, is a warrior.  And, while I hate that we have to know each other, I am beyond honored to call them my brothers and sisters in loss.   

At the end of the evening, we said our goodbyes.  I exchanged information with Michelle and George.  I'm hoping to collaborate with them in the future on some things.   I friended Shannon on Facebook, because that's how you do, and we headed back out into the cold, Minnesota night.  

But, it didn't seem as cold as it should have.   I think it's because I had a Star to keep me warm.  

                                         

       

The Heartbroken Mother

When I wrote "A Letter to My Doctor" a few weeks ago, I had no idea it would have the span that it did. I am so excited the post has reached so many and continues to make a difference. Because of the chord the post struck with people, I wanted to create something that would be even more meaningful and have even greater of an impact.

I thought that if the letter was powerful by itself, then a video would be even more powerful. It would show real people affected by loss. It would help connect the viewer with the true emotions felt by parents when their baby dies. It would make the letter human. I decided to ask the babyloss community to submit pictures of their children for this project, and was blown away by the response. Within the first hour of posting in two Facebook groups, I had dozens of emails, all from mothers who jumped at the chance to be a part of this, and who, more than anything, want their story told and their baby remembered.

I did not limit the video to pictures of babies born still. Some of the babies in the video lived for minutes, hours, and even days. Some passed away from birth defects, infections, illness, or SIDS. Honestly, for me, it doesn't matter why these children are gone. What matters is that they are - and they are so very missed, so very loved.


90 children appear in this video. 90. Let that sink in for just a moment. 90 children of Heartbroken Mothers. Some of the pictures were professionally taken, some were snapped with a personal camera, some have been retouched, but all of them are the most sacred possession each mother has of their child. Every picture in this video has been sent to me in good faith that I will tell their story honestly and with fidelity. Every picture is the result of a mother going out on a limb to support a cause by sharing the most vulnerable part of her motherhood, her baby's birth and death. This video is not just a video of me reading my blog post. This video is the heart and soul of every mother who has lost a child. When you watch it, remember that. Remember just how loved every single one of these children are. Remember that these pictures are all we have of our children. Remember how brave each of these mothers are to share their story and their baby with you.

Please Note: This video is "unlisted" on Youtube, and can only be accessed through this embedded link. If you share, please share the blog post and not just the YouTube link.

 In order to share this video in a group setting such as a face to face support group, or with hospital staff,  please let me know you are doing so.  You may email me at Kenleyninja at Gmail.

If this video moved you, please consider helping out a worthy cause.  The US Cuddle Cot Campaign is dedicated to make sure every maternity ward in the nation has a Cuddle Cot.   One of the beautiful Heartbroken Mothers from the video is working with the Campaign to bring a cuddle cot to her local hospital.  You can check out that link here.    Every hospital is required to be up to code in all sorts of areas, but they aren't required to have a Cuddle Cot.  Help get one into every hospital so that the next Heartbroken Mother (and there will be many) can have as many precious moments with her baby as possible.

Some of the resources mentioned in the video:

The TEARS Foundation
SOBBS
Still Born, Still Loved
Now I Lay Me Down to Sleep
The Sweet Pea Project
Cherishing the Journey
The Brianna Marie Foundation
Kaleb Kares
Still Birthday
Return to Zero (movie)

Also, check out Carly Marie's Project Heal.  I hadn't realized I didn't add it to the video until I had already published it.  Carly Marie does beautiful photography to remember our babies!

Once again, thank you for watching the video, reading the letter, and remembering the babies.

Truth or Dare

If you were ever in 5th grade, and I'm sure most of you were, you are familiar with the game Truth or Dare. Choose Truth and answer a probing question with complete honesty. Choose Dare and be obligated to perform a task outside of your comfort zone. You had no idea whether or not you were going to be forced to admit your crush on Alan Radwanski (man, that spiky hair gave my 11 year old heart such flutters!) or if you were going to have to do cartwheels in your backyard wearing your underwear on the outside of your clothes. (I...ahem..never did that.  Mainly because I can't cartwheel to save my life)

I feel a little like I have been playing a game of Truth or Dare with myself these last few weeks. In watching my blog post explode in the loss community, in having nurses and doctors thank me for my insight, in being a part of the sharing of such an important message, I have had to admit several truths.

Truth #1: I am excited.
 I am excited that my writing has reached so many and continues to spread. I am excited people are sharing my words and that I have been able to open the eyes of many as well as validate the feelings of others. I am excited to be making a difference in my little loss community.
Truth #2: I am terrified. 
 I am afraid I won't know how to take this as far as I would like it to go. I am afraid the paper wings will burn up before I can get my craft off the ground. I am afraid I am not good enough to make this happen, and that this entire movement is a fluke with an approaching expiration date. If I can make this bigger, I am afraid I won't do my sisters in loss justice. I am afraid I won't be able to be the spokesperson my community needs. I am afraid I will let down those whose hopes I have been building up.
Truth #3: I feel lost.
 I don't know where to go from here. I would love for my letter and video to be a part of regular training for medical and nursing students or for continuing education credits for those already in the profession. I would love to speak at conventions and conferences. I would love to put together a presentation that would be both moving and informative for anyone participating. I would love for hospital staff all over to use their training to seamlessly help a Heartbroken Mother as she says hello and goodbye to her beautiful baby. I want to make a difference, but I don't know what I'm doing. Really, I have no idea.
Truth #4: I believe in my message. 
Whatever happens, I will work hard to go as far as I can. I am committed to this cause and I will see it through to the best of my ability.

In addition to these truths, I have also been daring myself to push farther and make the biggest impact I possibly can.

Dare #1: I dared myself to ask for pictures to make a video. Everyone responded to the letter so intensely, I had a vision to create something that would have even more impact. I thought making a video of the letter would get the message out even more. So, I asked for photographs of our precious children, and I received them. I have been working on this video for a week and am needing to untie some red tape before wrapping it up. (See Truth #1)
 Dare #2: I am daring myself to pursue the presentation aspect of the letter. I want to contact hospitals instead of waiting for them to contact me. I am not sure how to go about this or what the response would be, but I want to put myself out there as a willing presenter for their staff's training. (See Truth #2 and 3)
Dare #3: I am daring myself to share my blog post with the "Celebrities" of the loss community. Carly Marie, Sean Hanish, Still Standing, The STILL project. I haven't gotten to that point yet. I'm not very good at tooting my own horn. Whenever I do, I feel like a fraud and a shameless self-promoter. I need to get over myself and remember that this isn't about ME, it's about our children. It's about the children of future Heartbroken Mothers. It's about those mothers and the doctors and nurses caring for them. It's about making a difference with my words. It's been happening, and I am daring myself to make it happen on a much larger scale, but I am scared out of my mind. (See Truth #2)

For the past two weeks, my brain has been going a mile a minute trying to keep up with the expansion of my tiny little blog post. For the past two weeks, this crazy game of Truth or Dare has been swirling around in my head.

I have no idea where this is going to go.  I have no idea what the end result will be or how I will get there.   All I know is that I can't believe I have even gotten this far so fast.  I can't believe the impact my words are making.  I am both humbled and inspired. 

This is so much more complicated than 5th grade!

This is the image Now I Lay Me Down to Sleep created for me when they shared my post on their page.

Amazed and Astounded

I am absolutely overwhelmed by the response to my post "A Letter to My Doctor". In less than two weeks, it has over 46, 000 views. It has been shared by several organizations on Facebook including the pages of the Global Alliance to Prevent Prematurity and Stillbirth, Kaleb Kares, The Sweet Pea Project, Brona: A Memior, The Florida chapter of the TEARS Foundation, and Footprints on Our Hearts. I have been contacted by countless doctors and L/D nurses who would like to share the letter with their staff, and I have been asked to speak at a few places as well. The Florida chapter of TEARS would like me to help them start a blog. Last, but certainly not least, I have been contacted by Now I Lay Me Down to Sleep. That development is still under wraps, but I am really excited about it!

It is amazing how quickly your life can change in such a short amount of time. Clearly, my life has been drastically altered since that Monday afternoon in February of 2013, and since that terrible day, I've known I needed to keep Kenley's memory alive. It is my job as a mother to make sure my children make their mark on this world. Since Kenley isn't here to do that, it is my job to do it for her.

When I first lost her and began looking around for support, I found several moms who had started non-profit organizations on behalf of their child. Cherishing the Journey, The Brianna Marie Foundation, and Avery's Light are all charities started by the women I have met on this road. I often thought about how I would start a non-profit. What could I do? What would my organization take care of? I knew I was passionate about being vocal about stillbirth and getting information into the hands of the people who can make a difference during delivery, but I didn't know where to even start.

When Allison asked me to give my input to the presentation for the VCOM medical students, I jumped on it. This was my chance to educate a few people about a cause close to my heart. When I shared it to my loss group, the response was immediate and intense. It struck a chord with everyone. They shared it with their friends. I posted it on my page and it was shared over a dozen times in an hour, and then it just spiraled outward. In my little corner of the world, I went "viral", and I still cannot believe it.

Maybe I don't have the organizational skills to start a charity, but I do have the skills to write. With the help of social media, my message has been seen by over 46,000 people. 46,000 people have been touched by my words. 46,000 people will bring that message into their own circle. I am in awe of what has been happening since that first upload.

To keep the momentum going, and to add to the impact, I am in the process of creating a video of the original post. I have recorded myself reading the letter and have asked for, and been recieving pictures of, our sweet babies. As of right now, I have over 60 women who have emailed me their pictures. Some are ones I know and some are complete strangers who read the letter and heard about the project. 60 families (and counting) who have been touched by infant loss who just want their story told and their baby remembered. So, I will tell it. I will remember them. I will make sure this message finds its way into the hands of the people who need to hold it, and into the hearts of the people who need to feel it.

This is what I can do. This is what I will do. I will do it for them...I will do it for her.
Kenley Evelyn Wood, my dear, darling Little Ninja, this is your mark.

A Letter to My Doctor

The following letter  was written to be read at a medical school lecture regarding how to handle the delivery of a baby who has died in the womb.  I wrote this post specifically to be shared.   If you know of someone who would benefit by reading this, please share it with them.    In writing, I thought to myself how scared a doctor dealing with this for the first time must be.   I also thought about all the doctors who do it all wrong as well as the ones who get it so right.  My personal doctor was amazing, and I am grateful for her every day that she made such a horrible and heart wrenching experience a little softer for me.   However, during my five years inside the loss community, I have heard horror stories of doctors that make everything a million times worse, whether through rough treatment or terrible comments.   When asked to write this, I wanted to make sure that I was the voice of my community.  I wanted upcoming doctors to know the right way to treat the Heartbroken Mother.  I hope I was able to do justice to the experience and to shed a little light onto an undeservedly taboo subject.  

Update:  The Video of this letter is completed.  You can read the blog post and watch it here.
You can also download a resource sheet here
Update 2:  I was recently contacted to help create memory boxes.  I wrote a letter to a newly bereaved parent.  You can access that letter here.
Update 3:  I have created a printable PDF of this letter for downloading and sharing.  You can access it here.
Update 4:  For anyone needing a Spanish Version of the letter, you can download one here

Dear Doctor,

I know this isn't what you were expecting today. You didn't wake up and head into work thinking, "Today is the day I am going to have to tell a mother her baby has died." Your day was supposed to be full of heartbeats and moving ultrasounds, of spreading goo over a laughing belly, of getting your doppler kicked by unseen baby feet. Your day was supposed to be taking care of excited mothers. You should be congratulating not consoling.

Yet, here you are, trying with all of your might to find my baby's heartbeat. You move your doppler all around my swollen belly, but all you hear is the faint thumping of my heart, which is starting to beat faster because I'm beginning to figure out what's about to happen. The lump in your throat is almost too big to let you form the words, but you don't know what to say anyway. Who does? You're nervous and shocked, and you don't know how you're going to get both of us through this. Let me help you.

First of all, don't hesitate or stall in any way. I already have a million fears racing through my head. If you leave to go get another doctor without saying anything, I will panic. As hard as it is to get the truth out, please do it quickly. Tell me as much as you can as soon as you can, and don't leave me alone. I'm suddenly very, very scared and I need support. "I'm sorry. I can't find the heartbeat." Say it softly but clearly. Hold my hand. Look me in the eye. You'll see the fear rise, but you'll also see hope. At this point though, I still think there's hope, that you might be wrong. I think there might be more tests, more things we can check. It won't be until you take me to the ultrasound room and I see my beautiful baby oh-so-still, that it will hit me.
It will hit me hard. I will curl up and clutch my stomach. I will writhe on the table. I will scream a scream you have never heard and will never want to hear again. A scream full of more pain than you think a human soul can take. "Oh, my baby!" I'll moan. "Not my baby!" You might even see me shatter, breaking into a thousand shards of sorrow. You might not be able to keep it together either. It's okay if you cry too. Honestly, please cry with me. Please let me see you are human. Let me see that you care about my baby as much as I did...that you care about me. If you don't already know my baby's name, ask, and from then on, refer to my baby by her name. She is not a Stillbirth. She is not a Spontaneous Abortion. She is not a Fetal Demise. She is my child. Those may be terms you have been taught to use, and that's fine, but don't use them with me. Use her name. Please, use her name. 

I have been dreaming of my child's birth since seeing those two lines on the stick, maybe even before then. I have been planning it in detail for the past several months. And now, none of it is going to happen the way it should. Make sure I have time to process what is about to happen. Let me make as many choices as I can, but realize that there might be some choices I am unable to make. So much is being thrown at me at once. I am in shock and I don't know what I am supposed to do. Guide, but don't force. I will probably do anything you tell me to do.

Talk to me about making memories with my baby. As gently as you can, let me know that these next few hours or days will be all I have, and I will want to make every second count. At first, I might be uneasy because the thought of holding my lifeless child is too disturbing for me to think about. Reassure me that I will want to see her and hold her. Encourage me to have a photographer come to take pictures. Again, I will be hesitant, but tell me that those images will be my most treasured possessions later. Tell me I won't have to look at them until I'm ready, but I should get them taken for the day that I am. Give me the opportunity to bathe and dress her. Months later, after the shock wears off, I will regret not knowing what her belly button looked like or whether or not she had any birthmarks. I will regret not counting her toes or brushing her hair. If your hospital doesn't provide memory kits, let my husband know where he can run out to get some plaster to make hand and foot molds and some ink for prints.


During labor and delivery, spend as much time with me as you can. I know you have other deliveries today. Happier deliveries. But, I need you just as much as those women. I might even need you more because once I am finished delivering my baby, my time with her is almost over. Don't forget about me. I already feel so alone. Don't tell me I can "try again" or to be grateful for the children I already have. It's not comforting, it's insulting to the child I am about to deliver. Encourage me to push like you would anyone else. Remember that my husband has lost a child too. He's going to try to be strong, but on the inside, he is falling apart. Let him do the things a father would normally do. Ask him if he wants to cut the cord. Even though our outcome is very different from the other families in the maternity wing, please don't treat us differently. While there might be extenuating circumstances that won't allow for complete normalcy, let us have the most normal delivery you can.

Before she comes, prepare me for the silence. Prepare me for what she might look like. Let me know she might be discolored. Some of her skin might be torn. She's not going to look like the baby I expect, but she is still my baby. When all is said and done, I will still think she is beautiful. When she is finally born, I will cry with sorrow and emptiness, but those cries will also be filled with love. I will cry for her loss, but I will also weep for her beauty. 

When my baby is born, treat her with respect. Hold her like you would a live baby. Pass her to me like you would a live baby, gently and with tender care. Tell me how beautiful you think she is.
If your hospital has a Cuddle Cot, show me how it works and let me keep her with me for as long as I'm able. If not, assure me that I can see her whenever I'd like. Bring her to me. Let me hold her. Encourage family members to hold her and to take pictures, even the children, but allow my husband and I some alone time with her without the insanity of everyone else.
My room will be The Quiet Room. It will be a room of hushed voices and sideways glances. A room with a giant elephant taking up all the space. I want to talk about her, but no one will. Ask me about her. Ask me how I came up with her name. Ask me about my favorite part of my pregnancy. Let me talk about her. Nothing you can say will make this better. There are no words more meaningful than "I am so sorry". Tell me you're sorry for the loss of my child. Tell me it was not my fault. I won't believe you, but tell me anyway. Give me information for grief counselors and loss groups, maybe help me arrange mental health care if you can. Give me a hug. Say her name one more time. 

I will leave the hospital empty and broken. My arms will feel impossibly heavy without a baby in them. I won't know what to do with myself once I get home. Send me a card a few days later, letting me know you are thinking about me and my baby. Write her name. I will appreciate your kindness and feel like my child mattered.

At my postpartum checkups, be gentle with my body. I already feel betrayed by it. Ask me how I am. I'll tell you I'm doing fine. I'm not. Again, give me more information about counseling or loss groups. I feel isolated and alone. I need to find others like me, even if I don't know it yet. Help me do that. Again, tell me it was not my fault. Please, don't bring up religion regarding my loss unless I do first. I might not be religious, and talks of heaven or angels might hurt rather than comfort. Don't try to rationalize what happened. Just acknowledge how much I must hurt. Use her name one more time. Every time someone else says her name, it seals another crack in my heart. 

It is possible there is a clear-cut reason for my baby's death, but it's also very possible there is not.  I will have many questions, and some that you might not be able to answer.  Please, give me all the information you can.  Don't dumb it down for me, but don't use "doctor's speak" either.    I want to believe this was a one-time tragedy and that my body is not broken.  I need to know what this means for future pregnancies if I choose to have them.   Trying again might be the first thing on my mind, or it might be the last, but either way, knowing where to go from here is important to me.

Know that I am grateful for you, even if I don't say it. Know that your kind words and gentle bedside manner mean more to me than you might realize. Know that your acknowledgement of my baby as a real person who mattered is the first step in my healing process, and that how you treat me as a mother and her as my daughter will stay with me forever. 

I didn't want your day to end up like this. I didn't want my child to come home with me in an urn. No one thinks this will happen to them until it does. When I go home, you will go back to your normal routine of delivering babies with heartbeats, but you will be forever changed. You might, every once in a while, notice her face or name drifting across the white space of your brain, and I hope you do. I hope you think of her, even just one more time, because I think of her every day. I always will.

With Sincere Thanks, 
The Heartbroken Mother

This is one of many beautiful pieces of art by Louie Ejanda.   To purchase a print of this artwork or others, click here