Monday, March 14, 2016

Run, Kenley, Run

Saturday was my fourth time attending the Brianna Marie 5K. For those who don't know, Brianna Marie is the daughter of my friend Aran, who I had not met until the first year the 5K was held. Brianna died as a result of Fetal Hydrops, which is an abnormal accumulation of fluid in areas of the baby's body while in utero. Aran started the Brianna Marie Foundation after her daughter died to help raise money for awareness and research. She works closely with local doctors to help save the lives of babies affected by this condition. Brianna and I share the same birthday, and the first year of the race was also my first birthday without Kenley. Attending the 5K that first year gave me a sense of purpose for that day, and it has been a tradition ever since.

My first year, I attended but didn't participate because I was still healing from my C-section. The second year, I was pregnant with Piper and had just gotten over being sick, so I didn't walk because I didn't want to chance it. Last year and this year, I walked with Piper in her stroller. What I love about this 5K, besides its wonderful cause, is that friends of mine just automatically sign up to run it in honor of Kenley. I didn't really do a great deal of Facebook promotion regarding it this year, but still, my "regulars" were there - for the fourth year in a row. It really warmed my heart to know that I have people in my life who support me and remember my daughter. I never really had any doubt about this - but it's nice to actually see in action.

It was a good day for a race. The sun was shining and the temperature was warm. I did my best to keep a pretty good pace and finished with an 18 minute mile, which isn't too bad for walking with a toddler in a jogging stroller.

After everyone had finished the 5K, we released butterflies in honor of all the babies who are no longer with us.

My walking partner all ready to go.

Colleen, Susie, and Me after the race

My mother, the marathon runner, finished the race, and backtracked to take Piper's stroller from me so I could cross the finish line without it. She's pretty amazing.

My Little Ham

Releasing butterflies in honor of Kenley and all the other babies

Medal winners!

Confession time: The Brianna Marie 5K was the first step in a year long journey I am about to take. After the race, I headed over to Running Zone and forked over a kidney for a new pair of Asics. Once I got home, I pulled my brand new FitBit out of the package to charge and set up. Today, I strapped Piper back into her jogging stroller and took her for a two mile walk. I'm building up stamina. I'm researching the Galloway Method and am working on a good running playlist. In the beginning of July, I will scramble to get myself registered for my end goal. And on February 26, 2017, I will complete the Disney Princess Half Marathon for Kenley's fourth birthday, most likely in a Ninja-worthy tutu.

I have no delusions. I know this is going to be hard. I'm almost 38 years old. I'm an out of shape asthmatic. I have a toddler and a husband who works nights, and finding the time to torture myself with long distance running is only one of the many challenges I am going to face this year to meet my goal, but Kenley's Legacy is more than being a voice in the loss community. Kenley's Legacy is also about making me a better person - about making me stronger than I ever thought I could be. Three years ago, when she died, if you had told me this is where I would be, I would have never believed you. Three Years Ago Me would have been convinced that she would have been in a mental institution by now - or maybe even in a vase right next to Kenley. But I'm not. I'm here. I'm surviving. I'm creating a life where she isn't.

I am going to do this. For her. For me. For the sake of accomplishing something I never imagined I could.

I'll see you at the finish line.

 Run, Kenley, Run.

Friday, March 4, 2016


Today, One Pink Balloon is three years old.  Three years ago today, I woke up, belly sore and heart broken, and decided to do what I had always done when my emotions were too tangled to think.  I started to write.  Today is the day I decided to take charge of my journey and make it my own.   Today is the day I refused to be beaten by grief.  Clearly, it has not been smooth sailing.   The seas at the beginning were angry and rough, and even now there are still days where I feel like I'm drowning.  But, I'm still here.  I'm still in this ocean, steering through this life as best as I can.  Today is the day I broke the silence for the very first time.  

At the beginning, this blog was created to help me sort through my emotions and try to make sense of the shattered pieces of my life.  I wrote to get my pain out, and my blog became my most important outlet.   Whatever was floating around in my head was filtered through my keyboard and onto this page.   I pride myself on the fact that every entry of this blog is 100% accurate and true.  If I had the words to say it, I said it here.   Even if I didn't have the words, I still tried.   I credit this blog as the main contributor to my healing.   

I am not one to give myself accolades, but I am very proud of what I have done with my little corner of the internet.   Not just with A Letter to My Doctor (which, by the way, has over 175,000 views with the video at just under 10,000), but with every post.   Every post I have written is every bit of my true self.  I have always wanted to be a writer, and this blog has helped me become one.   Of course it isn't the story I wanted to tell, but I have done my best to tell it in the most honest way possible.   

My hope is that people reading this blog - whether they've been here since the beginning, or backtracked through once they found me - have been given some sort of insight into what it's like to lose a baby to stillbirth.    I hope I have brought comfort to any other loss-mom reading this in knowing she is not alone, that her emotions are valid, and her baby is valued.   I hope I have brought awareness to those who need it and educated those in the dark.  I hope the stone I threw in three years ago is still creating ripples.  

So, I celebrate today.   I celebrate the day I refused to go silently into that good night - the day I took the first step towards healing - the day I decided to share this very personal and difficult journey with the world.   

Happy Blogiversary to One Pink Balloon.   The words are mine.   The legacy is hers.  


Tuesday, March 1, 2016

To Be or Not To Be

Words are important. No one knows this more than a writer. The words you choose are the architecture of your story. They create sweeping entrances with pristine marble columns or humble stone doorsteps strewn with grass and dirt. They build palaces and cottages, soft, rounded arches and angled concrete corners. Language is the structure of thought. Language shapes and changes how people see an idea. Words influence images. It's why politicians have speech writers to craft the exact sentence structure needed to convey the point they want to make. It's why classic books are able to stand the test of time. It's why you get nervous before an important conversation - because you know that what you want to say is only slightly more important than how you say it. Or, maybe it's the other way around.

Language Matters. It's why we've stopped using certain words in our society to prevent the spread of hate, ignorance, and destructive ideas. Language can minimize the marginalized or give power to the powerless. Language can be the difference between confirming someone's current ideaology and creating another one. Language is important when discussing race, gender, sexual orientation, religion...really anything near and dear to the human heart. Language matters. The words we choose are vital to the message we wish to convey.

You see these phrases on baby shower cards and invitations. You hear them in conversation. "Congratulations to the Mother-To-Be!" "Welcome Baby-To-Be!" The words "to be" seem innocuous enough, but when paired with the word "Mother" or "Baby", their impact becomes greater than you think. "To be" implies "not yet", and while the majority of people may think it's not a big deal to consider a pregnant woman "not yet" a mother, an entire community would emphatically disagree. (To be clear, I am not talking about what consitutes a baby. This is NOT a post about the definition of life, and do not interpret my words as being part of a larger agenda. I am talking about Motherhood, not personhood.) So, why are the words "To be" so important they warrant an entire blog post? Because they influence how Motherhood is interpreted and how mothers are seen in society.

"To Be" makes it seem like Motherhood isn't already happening, like it's something that won't happen until a squirming, crying child is laid in your arms. "To Be" creates an end goal, and sets the expectation that pregnancy results in babies. "To Be" minimizes the connection between mother and child by implying that connection is not strong enough to occur before birth. "To Be" says: I'm not a mother yet, but I will be once my baby is born. Feeling her move in my belly is not enough to make me her mother. Passing her nutrients and oxygen through my body is not enough to make me her mother. Carrying her for weeks upon weeks as she grows and develops is not enough to make me her mother. She has to be born. She has to cry and breathe and look up at me with her brand new eyes - and then - wham! - then I will be her mother. "To Be" cultivates a sense of failure in the Heartbroken Mother. That end goal was never met. We didn't actually get "to be" anything but broken.

Mothers of Loss already have to work so hard to be recognized as a mother. I wrote blog post after blog post after blog post detailing my love for Kenley and my agony over losing her. I wrote daily for six solid months, and three years later am still writing about her and championing on her behalf. Honestly, if I wasn't so vocal, would you really think of her as my child? If I told you of her death and never spoke about it again, would you remember her name? Would you still think of me as a mother of two? I have actually had someone recently ask me if I wanted to give Piper a sibling, and when I explained she already had one, I was met with the words, "Oh, that doesn't count." Doesn't count?? Why? Because I was only pregnant with her? Because she didn't actually live outside of my body? How can she not count? Because, I was only a Mother-To-Be.

Sticks and stones will break my bones, but words will break my heart.

"To Be" reinforces the idea that mothers are mothers when their babies are born - and born alive. "To Be" is the reason so many women who ARE mothers don't feel like them, why so many women don't think they have earned the right to carry that title. Because of this, "To Be" creates an atmosphere that promotes silence after loss since no one seems to be able to wrap their brain around a Mother-To-Be who didn't get To Be.

A majority of the baby loss community's skin prickles when they see the words "To Be" attached to a baby shower card or hear them in reference to someone who is pregnant. We see it as a slap in the face to our Motherhood - to our children. At this point, the less empathetic reader may be thinking "Oh geez, you're so sensitive. Why should I tiptoe around your feelings? Why do I have to change the language I use because you don't like it?" Well, the fact is, you don't. However, we really should care how we make others feel. We should care about whether or not our words hurt another person. It's simple human decency. The people who snivel about having to worry about hurting someone else's feelings frankly make me sick inside. Why wouldn't you worry about that? Why wouldn't you care about how what you say can affect someone else?

Really, it's not just about the feelings of mothers who have lost children. It's about the entire approach to pregnancy and motherhood. We can't keep promoting the idea that motherhood begins when a baby is born. It's just not true. Motherhood begins when a woman decides she is a mother. For some women, it starts with two lines on a stick. For others, it starts when her bladder becomes a punching bag. Rarely - so very rarely - does it delay itself until a squirming baby is laid in her arms.

Clearly, I don't have such high aspirations as to think I can completely change the way our entire society speaks about pregnant mothers. But, I do know change happens one person at a time. It starts with one person making a decision to do something different. So, I ask for all of you reading this to do one simple thing. Stop promoting "To Be." Stop saying it. Stop buying cards or gifts with those words. (Alternatives are out there. I know because I buy them.) Use different language. Be purposeful with the words you do use. Your pregnant co-worker isn't a Mother-To-Be. She isn't carrying her Daughter-To-Be. They are mother and daughter now. Birth will not change that. Neither will death. When choosing your words, remember that mothers are mothers, regardless of whether their children are in their belly, in their arms, or in the stars. Motherhood is not the culmination of pregnancy. Motherhood doesn't begin when pregnancy ends - it simply continues.


A Day with The Mouse

Our usual birthday tradition has been family photos at Kenley's tree.   However, a few weeks before Kenley's birthday, my wonderful friend who takes our pictures told me of a family matter that would take her away to the west coast during that time.   At first, I completely panicked.  I couldn't have nothing to do that day.   I couldn't just let that day pass without something special happening.  What was I going to do?   After talking to a few friends, I started mulling over the idea about going to The Magic Kingdom at Walt Disney World.   I had been thinking of getting myself an annual pass anyway to take Piper on the weekends and it would be kind of nice to get some photos of the K in front of the castle.   The more I thought about it, the more it seemed like a good idea.  What three year old wouldn't love a trip to Disney?

I knew I had to sell the idea to Mike.  He hates crowds and lines and tourists.   Good thing Disney has none of those, right?   When I brought it up though, he went along with it right away.  I think by now he has realized when it comes to me wanting to do things relating to Kenley, it's best to just let it happen. An emotional wife (especially mid-February) isn't something he wants to mess with.   So - Disney it is!

As her birthday got closer, I found myself looking forward to it, which was a nice change from the horrible dread that had hung over me for most of the month.    I started thinking about where I wanted to get K pictures and planning the rides Piper would also like.   I was thinking about her birthday with a little bit of excitement in my heart - and that was amazing.   Honestly, the only thing that got me through those last few days before her birthday was the knowledge that soon we would be going to Disney World.  I clung to those plans for dear life.  They were my bouy in an angry ocean.

Kenley's birthday dawned clear and cold.  Piper let us sleep until almost 8.  (Granted, she was sprawled out in our bed, forming the extra long middle of a capital H, but still....8 am!)  I fed her a breakfast of an Eggo waffles and some raspberries and dressed her in a long sleeved tunic dotted with silver stars - in honor of her big sister.    Just as we were about to walk out the door, Piper's belly decided the waffles and raspberries were no longer welcome, and she promptly threw up all over her outfit.   As I changed her clothes, I worried that my rainbow was sick and we would have to change our plans - which filled me with such conflict I couldn't think straight.  She was acting fine, so Mike and I decided that we'd get her in the car and see how the ride treated her.    Worst case scenerio, we'd just come home.  However, just as we drove into the stretch of highway that included no turnaournds until Disney World, she threw up again - all over her second outfit and her carseat.  Twisting in my seatbelt, I cleaned her up as best I could, gave her some water, and she fell asleep.  There was nothing we could do at this point.  We would have to make a final decision in the parking lot.  Obviously, I wasn't going to sacrifice the health of my living child for the memory of my other, but my heart was torn because I had pinned my hopes on this day being such a great day.  I didn't know how I would handlle having to go home.

When we pulled into the parking lot, I woke up Piper from her nap - and she was great.   She woke up smiling and happy and refreshed.   Whatever the issue was had gone.  Maybe it was just a bad berry.   Maybe it was Disney Magic.  We changed her once again, crossed our fingers because that was our last set of extra clothes, and headed towards the ticket counter.   Even though it was close to ten o'clock, we still parked within the first ten rows, which meant the park wasn't nearly as crowded as I had expected it to be.    We bought our tickets, used the Disney World App to secure our fastpasses, and headed to the monorail.   Piper called it a train and we told her it was a monorail, so for the 10 minutes we waited to board, we got to hear "I ride mon-rail!  Mon-rail right there!"   I could hear a peppiness in her voice that meant she wasn't feeling sick at all - and I was getting so excited to have a family day with The Mouse.  This day was going to be great.

I took my first K picture at the gates of the Magic Kingdom.   I tried getting as many pictures as I could, but with an excited toddler, a crowd-hating husband, and a K going in an out of a backpack, I didn't always have the ability to get a good shot.  Also, most of my pictures this day aren't the best quality.  You try taking iPhone photos of a K with an almost -two year old tugging at you in a crowd of ten thousand people!  You're going to get some blur!   No matter the quality, it felt good to take my Ninja to the Happiest Place on Earth.  


We walked through the gates and onto Main Street, where a parade was circling through the square.  Even though I have been to Disney dozens of times, I can still see magic on those streets.  Now that I  can see it through the eyes of my rainbow, it is even more amazing.  Piper's eyes lit up at the sight of the characters dancing to the parade music and the floats gliding through the street.  The parade was just ending as we neared, so we followed it up Main Street to the castle.  


From the castle, we hooked a left and headed over to Adventureland.  
 For whatever strange reason, my husband had never ridden Pirates of the Caribbean, and that issue needed to be rectified.  The standby line was only 30 minutes, and it went by pretty fast.   The line winds through cave-like rooms full of cannons, barrels of gunpowder, and various other pirate paraphernalia.  I am sure the people surrounding us during the wait were just delighted with the constant repetition of  Piper's excited "What's that?"   

As we approached the boat loading zone, we were asked how many in our party and directed to row 3.   My mom brain quickly connected that to how it was Kenley's third birthday and the very first ride we go on, we are in the third row.   I said something to Mike, and he laughed and shook it off.   Actually, this wasn't the last of Row 3.   For the rest of the day, any time we waited in line, we were directed to Row 3 to load.   Every ride.   I only got pictures of two of them because I either had already put the K away - or I had a kid in my hands - or there wasn't time - but trust me.   I know it's just a mathematical coincedence and it has more to do with numbers and crowd control than it does with my little girl - but it made me smile every time it happened.   


Piper was a little nervous at the beginning and didn't really care for the slight drop into darkness, but once we rounded the corner into the Caribbean, she was happy as a clam, and "What's that?" came back with a vengance.  This time the phrase was accompanied with cannon fire and "Oooh, noise!"

After Pirates, we headed over to use our first Fastpass of the day at Peter Pan's Flight.   I tried getting a picture of Piper holding the K, but she wasn't too excited about it.  She did enjoy screaming out "Moon!" at the top of her lungs as we flew over London though.  


By now, it was close to lunchtime, so we headed over to Cosmic Ray's Starlight Cafe in Tomorrowland.  Mike got in line and Piper and I headed down to Cosmic Ray's lounge where an animatronic alien, Sonny Eclipse, played 40's and 50's era style music.   While we waited, I tried again to get a picture of my girls together.    I could either get the K facing forward or Piper facing forward, but not both at the same time.   Oh well....I guess that's how it is with siblings anyway, right?


As we were cleaning up from lunch Sonny Eclipse started singing a song called "Oh Bright Little Star", which definitely caught my ear.   I looked up the lyrics online and part of them go like this: 

Oh Bright Little Star, 
though I'm light years away from her now
I can't help but to feel that somewhow 
we're both wishing on you
I imagine your light in her eyes as she gazes up into the sky
At this moment does she realize
you are in my eyes too

Someday, somewhere I will find her
In a universe up above
Tell her, little star, I'll surround her
With all my love.

Now, obviously, these lyrics are a cheesy love song between make-believe aliens, but since it was My Little Star's birthday, I chose to apply them to her.  Finding connections in the smallest things can bring the biggest comfort, and I felt like letting that song comfort me.

Full of burgers and chicken nuggets, we headed over to The Journey of the Little Mermaid for our next Fastpass.  Disney has changed a lot since the hay-day of my college days, and while I do miss some of the things that used to be, I do not miss the old Fastpass ticket machines.   I would always get stuck behind someone who couldn't figure out how to put their card into the slot or who had seventeen of their closest friends' cards with them to scan at once.   The new system has you link your tickets on an app and select your fastpasses all at once.  Then, you just scan your own card or bracelett at the Fastpass line.   With a toddler in a Tula, it made our day so much easier!  

Piper loved the Little Mermaid.   She loves blowing bubbles, so the entire ride had her amazed with under the sea bubbles and dancing fish.   



By this time in our day, our spunky little rainbow was beginning to fade.   I strapped her back into the Tula for a nap and true to form, she fell quickly asleep.   Mike and I decided to take this opportunity to ride The Haunted Mansion.  

While in line, he noticed the couple in front of us speaking German, a language dear to his heart since spending a year there in his twenties.   He struck up a conversation with them, none of which I understood.   The lady carried this purse.   


Waiting in line while Mike chatted gave me the perfect opportunity to get another picture of my girls.   
 Piper woke up in the middle of the Haunted Mansion, but was pretty cool with everything.  I had carried her in the Tula the whole way and sat with her still attached in our Doom Buggy, so I think she felt safe to begin with.    Besides, the Haunted Mansion isn't really all that scary.  It's Disney World, after all.

From the mansion, we headed back through Fantasyland to hit up our final Fastpass for the day, The Many Adventures of Winnie the Pooh.   I am not a fan of the Hundred Acre Wood, but my youngest sure is.  A few months ago, we met some friends for a character breakfast at The Grand Floridian, and Piper could not get enough of Tigger.   Pooh bear was just alright - but Tigger was where it was at!   So, I knew she would love this ride, which she absolutely did.   Each time Tigger popped up, she pointed and said "Tigger!  Tigger right there!"  Oh yeah...and guess where we loaded onto the ride?  

By now, it was around three o'clock and we figured we had at least two good hours left before we'd have to head home, so we ventured back into Tomorrowland for Buzz Lightyear's Space Ranger Spin.  

Again, the Standby line was only 30 minutes, which is excellent for this ride and time of day.  I popped Piper onto my lap, held her with my right hand and aimed my lazer with my left.   I am absolutely terrible at this ride and barely cracked 50,000 points.   My husband, however, had over 100,000 within the first five seconds and ended the game with over 600,000 as a Cosmic Commando.   I had full intention of getting the photo they take of you on the ride, but when we checked it out, Piper's face was totally covered by the ray-gun, kind of like how Mike Wazowski's face is always covered in the Monster's INC commercials.  It was actually pretty hilarious.

Right next to Buzz is an old classic - the Carousel of Progress.   

      Mike loves this ride.    Look how excited he is.  

Piper enjoyed the Carousel.  She was a little confused by the rotating room at first, but she liked the show.   This was our last ride.   We grabbed some dinner in Frontierland and headed back to the car.  Piper fell asleep before we got out of the parking lot.  We drove home exhausted and emotional.  

I had spent all month under a cloud of grief, all month dreading her birthday, all month wanting to crawl into a hole.  A day like this one was just what I needed.   Even though it's clearly not in the manner I'd like, I got to take both of my girls to the Happiest Place on Earth.   I got to spend a day with my Night Shift husband, which is also a rare treat. The darkness that smothered me like a blanket all month felt brighter and lighter.   

Kenley's birthday, which could have been another dark day in a month of grief, turned out to be a day of smiles and laughter.  A day where I felt connected to my star while parenting my rainbow.  I felt peaceful and happy.   Those days are rare, but they do exist.   

No matter how horrible grief is, I have to remember that in between the moments of pain and sadness, there are moments of joy.   I have to remember that I may have terrible days - I may have an impossibly long chain of terrible days - but life itself isn't terrible.   There will be a break in the darkness.   Sometimes, I will have to search for it.  Sometimes, it might take me a while to find it, but it will be there.  Waiting for me.  A bright spot where happiness hides.  

Like the Carousel says, 
"There's a great big beautiful tomorrow
Shining at the end of every day
There's a great big beautiful tomorrow
Just a dream away."


Happy Birthday, Kenley.   We love you.