Last year, I took part in the Capture Your Grief project and have decided to do so again this year.  For more information on the project, visit carlymarieprojectheal.com. I think it will be interesting to look back on what I wrote at this time one year ago. When the searing pain was so fresh.  When my eyes were still swollen from crying constantly.  When it had only been five weeks.  Now 13 months have gone by.  And I will tell you that the pain is still there.  I miss her just as much today as I did then.  It is not a pain you get over.  Healing can happen– but healing does not mean the pain goes away.  It means you learn to cope.  You get stronger.  You find ways to get out of bed each morning.

I’ve been running in the morning so I often watch the sun peek through the darkness.  I was disappointed this morning because I didn’t think it was pretty enough.  I knew I was taking a picture so I hoped it was as lovely as it has been so many days. But it was just blue.  A few white clouds.  Not the bright pink streaks that remind me so much of my little girl.  But as I finished my run and walked to the car, the pink came through.  And I said hello to Zoey.  Just as I do with the dawn of every new day.  Another day without her.  But another day closer to when I will see her again.

Hours passed. Days passed.  Then a week.  A month.   A year.  Every moment takes me away from the last time.  The last time I bathed her.  The last time I changed her diaper. Fed her.  Felt her breath on skin.

The days leading up to Zoey’s death still trouble me.  In the last few days, the guilt has reared its ugly head.  I wonder if there is something more I could have done.  Or something I should have handled differently.  I spent her entire life trying to do what made her happy.  To make her comfortable.  And in those last days, I fear I failed.  I know I loved her. I know she felt it.  But there are memories, feelings that you can’t stop from washing over you. You have to take them.  You’re powerless to them. You have to hold on. Hold your breath.  You have to lay there, grasping at your chest where your child should be, sobbing until you can’t anymore.  Until you fall asleep.  Until there’s nothing left.

I look back at the photos that document her last days with us.  The ones I took before I knew they would be the last ones.  August 25^th: took her to the doctor to see about a referral to a cardiac surgeon.  To fix the hole in her heart.  August 26^th: the emergency room. Checking to see if she had an intestinal blockage.  The ones where she looks so miserable.  Swollen. Uncomfortable.  Unhappy. We put in a feeding tube that night at the hospital.  Thought it was the right choice.  She ripped it out as soon as we got home.  I think she was telling me.  I didn’t listen.   It was the night we could not soothe her.  Joe was out of town.  My mom stayed with me at the house.  I snuck away for the first time in her life to my own bed.  Only for an hour or so.   August 27: our nurse came to the house and put in a new feeding tube. I swaddled her so she couldn’t get her little hands to it.  She did not like to be swaddled.  And then the call.   The one where they said they saw something on the scan from the emergency room they didn’t see before.  Take out the tube.  Give her morphine.  Hold her.  Prepare to say goodbye.  The 28^th: I took a selfie with Zoey.  I was embarrassed to ask someone else to take my picture with my dying child.  I was afraid they’d think it was weird.  That I shouldn’t record that day with a photo.  But she looks peaceful.  Resting against my chest.

Joe and I had given her a bath earlier that morning.  She hated bath time, but it just seemed like it was the only thing I had left do to for her.  And while we were drying her off, she opened her eyes for the last time.  She was telling us goodbye.  And then I just held her.  Nestled next to my heart—the place she belonged.  I felt her heart beat for the last time.  Quietly, softly she slipped from this earth.  The moment her soul left us was as peaceful and beautiful as it could be.

I wanted her heart to start beating again.  I wanted all the conversations about her dying to be worst case scenario imaginations. I did not want her to leave me.  I’d already told her that it was okay.  That I understood .  That she’d see her grandpa and great-grandma and Hattie.  That she wouldn’t be alone.  And that we’d always love her.

The hours after haunt me.  Feeling her body go cold.  Stiffening.  I changed her clothes.  Wondered if I should put on a diaper.  Or leave her without.  I kept layering blankets on her—unaware that the funeral director really just wanted another one to cover her.

I didn’t want it to be real.

And then I had to give her away.  I touched those tiny little bunny feet for the last time.  Tried to burn the memory of her blue eyes.  And kissed her goodbye.

I love you Zoey Tamsyn. I miss you. You were the best part of me and gave me the most amazing months of my life.  You changed me.  You taught me so much. You continue to teach me.  Resilience. Love. Hope.  I pray my love finds you wherever you are.

Over the last year I’ve taken part in a few projects aimed at healing my broken heart-if even just a little bit.  Today is another one. I found the August 19^th Day of Hope prayer flag project.  A prayer flag is a tradition in Tibet.  It’s a piece of material often inscribed with mantras, prayers, messages, poems or names.  The belief is that once the Prayer Flag is hung, the breeze takes the prayers and carries them all over the world.  They are meant to spread good will and compassion everywhere.

I created a prayer flag honoring Zoey.  As I’ve said before, our version of hope changed many times over her life and now that she’s passed. I still hope for her story to be told.  I hope for people to say her name.  I hope others remember her and all the other little ones lost.  I hope to find peace and joy again.

I wanted to create something with things that reminded me of her.  A chance to tell her story again.  Obviously an anchor had to be included.

We have this hope as an anchor for the soul firm and secure.

Hebrews 6:19

The strips of fabric all have meaning as well.  I’ll start from the bottom.

Zebra print: Reminds me of the Zoo where we celebrated Zoey’s life.  She also has a memorial brick there.

Sparkly blue: I like to picture her at the beach, tiny toes in the sand, watching the way the water glistens as the sun hits it.

Pink polka dots: My weighted Zoey bear has a pink and white polka dot bow.

Fabric from my wedding dress: One of my favorite pictures of Zoey has her wrapped in my wedding dress (the one I wore at the Zoo at our wedding reception).  She looks like a little angel in it.  When we knew we were getting those photos taken, I searched everywhere I could think of for the flowers I wore in my hair that day so she could have those with her too.

Rainbow: Hope for finding our rainbow. I don’t know what form that will come.  Rainbows are beauty after the storm.  I see the storm as losing her.  I don’t know if it’s in the cards for us to have a “rainbow baby” but I know there has to be beauty left in this life for us.  Maybe it’s another child, maybe a house on the beach.  Maybe it’s just finding peace.

Owl and Butterfly: In memory of Evey and Hattie.  Zoey’s friends.  I send prayers for their families for peace and strength. And I hope those three beautiful girls are together. Laughing and playing and watching over us.

Sea turtle: we placed Zoey’s ashes in biodegradable sea turtles urns. It is my hope that when we visit the ocean that I feel her presence.  

Kitty cat: My cat, Cece, slept on my belly while I was pregnant and also with Zoey and me in our recliner after she came home with us. I was worried about how Cece would react to Zoey when we brought her home, but she was not phased.  Cece often curled up on Zoey’s things: her blankets, her boppy pillow.  There are so many pictures of Zoey that also have Cece in them.  I like to think they were buddies.  And Cece watched over and protected her.

Pink flowers: There’s a flower called a spider plant.  My great-grandmother grew them at her house.  They always remind me of her and the great love I have for her.  There’s just something about a day at grandma’s house that makes the world a little better.  We took Zoey to a local park and came across those flowers so I have a picture of her with them.  And now she’s with my great-grandmother.  I hope Zoey is hearing about the days I spent with my great-grandma.  How she’d make me French toast and fried chicken whenever I wanted.  How we’d walk to the park and always stop at the little ice cream shop on the way home for a chocolate dipped cone.

Mickey Mouse: I felt an overwhelming need to go to Disney World when I was pregnant with Zoey. I wanted her to feel the magic.  And I ran the Disney Princess race in her memory and will do so again this year. It’s one little way I feel I can keep saying her name and do something in her memory.

Blue fabric: Her eyes. Those beautiful, piercing blue eyes. The ones that said so much without a word.

As I put the flag up tonight, I sent my wishes for all those who are hurting from the loss of their child.  Wishes that our babies are remembered. Wishes for peace.  Wishes for love. Wishes for hope.

It’s been “one of those days”.  One where you find yourself sitting on the bathroom floor crying.  One where you flee your house after finding a burp cloth hidden away under the couch cushions.  At one point today, I was sitting out back staring at the little pumpkin I’d pulled from the vine growing in the yard.  It made me think about the one pumpkin that grew from the same container when I first found out I was pregnant with Zoey.  The one I thought was a sign from my dad. And I smiled. And then I cried.  Because everything here at this house is like that– two sides to every memory.  Every moment of light followed by a dark shadow.  Every happy moment halted by that familiar lump in your throat.

The chair we slept in every night nestled together along with Cece the cat is the same chair I held her the last night.  The night where I didn’t sleep because I didn’t want to wake up to find her gone.  The night I thought she took her last breath only to calm her and feel her relax and exhale another breath against my skin.

The couch where I’d lay her wrapped in her hooded kitty towel after bath time so I could dry her off and where I kissed her cheek over and over until she turned and licked me is the same couch where I held her as her heart stopped beating.

The driveway we pulled into on our way home from the hospital and I told my baby girl that she was home. Where Joe took our picture next to the balloons and sign announcing “It’s a Girl!”.  It’s the same driveway where I kissed her the last time and placed her in the front seat of the car that would take her away from me for the last time.  Where Joe had to pick me up off the ground and help me into the house.

Everything here is where she was. I’ve thought about moving– packing up her things, taking her picture down from the mantel and starting over somewhere else.  But this place where she died and where we feel the overwhelming emptiness is also where she lived.

At this time last year, Zoey was 12 weeks old.  But now we edge closer to a year without her.  There are many things I haven’t said because I can’t find the words.  A darkness too deep, a pain too penetrating.  I often try to hide it.  And from the outside it probably seems I’m okay.  But I’ll never really be okay again.  A part of me is missing.

What you don’t see are the restless nights.  The ones I lay in bed, the thoughts unstoppable. Grief sitting on my chest.  Struggling to breath.

You can’t see the lump in my throat as I walk past the baby section.

You don’t see the ache when I’m near another baby.  The one that screams “your arms are empty!”

You can’t feel my heart skip a beat when I see her little footprints inked on the photo in the hall.

On the way home one evening, Joe and I pulled into the driveway and he mentioned that the fireflies were out. I recalled to him how my brother and I would chase them when we were little.  I immediately saw Joe’s face fall.  A wordless expression I’ve sadly come to recognize over the last few months.  The one that in an instant says so much:

We’re going to miss out on that with her.  I miss her.  I long for her.  I love her.

It’s not just the big things we miss.  It’s everything.  Everything has been taken.  Summer nights chasing fireflies.  A little girl riding on her daddy’s shoulders.  Snow cones and snow ball fights. Gathering candy at the parade.  Soccer games and sleepless nights.

These are the things others don’t see.  The moments of searing pain that stay hidden.

I wonder if I showed the pain more if people would understand.  If I refused to get out of bed one day, would they realize how much her life still matters?  There are moments it looks like people have forgotten her. My life was torn to shreds. It hurts me and the other moms and dads who lost their babies before they took a breath, at three hours, three days, three months, three years, thirty.  It hurts us all.  Yes, I get up and I go to work.  And go shopping.  And do all of the things I used to do.  But I am not the same.  And every time I leave the house, I tell a photo of my daughter goodbye and that I love her.  A photo.

I look at myself and know things are not the same.  But a stranger on the street?  They’d pass me and never know.  There are moments I want to scream her name just so I can hear it.  Just so people know she was here.

I’ve decided to run the Disney Glass Slipper Challenge this year.  I started last year with the Princess half so decided to run both the 10k and the half this year. Running helped me so much last year.  It gave me a goal.  A purpose.  It would have been very easy to just hide in my house last winter, but I wanted to do that race for Zoey.  I wanted to help the hospitals that helped us both before her birth and after.  And most importantly it’s a way for me to keep being her mom.  To keep saying her name and telling her story.  To break outside of my comfort zone and make other people uncomfortable too.  Because I get it: nobody really wants to talk about dead children.  It’s ridiculously depressing.  It’s your worst nightmare.  The one you want to hide from.  I’ve heard it all: “I can’t imagine what that’s like”. “I’m glad I’m not you”.  But this is my reality and the reality of so many other parents.  We get to talk about our kids too.  So please, tonight as you chase fireflies with your sweet kiddos, think about the parents like us who are missing that chance.  And about the moms and dads who are spending the night in a hospital watching over their babies.  Please don’t forget us.

If you’re interested in donating to Children’s Miracle Network, the link is below. I’ll be hosting a few fundraisers in the coming months too.  Also, Zoey’s brick is now at the Zoo.  It is at the north entrance by The Living World.  Stop by to see it on your next visit. It is wonderful.  I love knowing her name is there at the place we celebrated her life.

http://princesshalfmarathon.childrensmiraclenetworkhospitals.org/index.cfm?fuseaction=donorDrive.participant&participantID=2224

Today I miss both my father and watching the father my husband was to our daughter.  I hope my dad is watching over my little girl now.  That he’s taking her and her friends out for ice cream and to car shows.  I hope he tells them how he once let a litter of kittens live in the trunk of the ’66 Mustang he was restoring because he didn’t have the heart to kick them out.  I hope they watch movies together and he’s teaching her to draw.  I often wonder what life would look like if they were both here.  He would have loved her.  Delicately held her–afraid she’d break. I wonder if he left us so soon because he had to be ready for her somewhere else.

I saw my dad in a new light when Zoey came to us.  My dad and I were close, but watching a dad with his daughter from the outside was a new experience for me.  I was always a little jealous of the way Zoey looked at Joe.  Like she was in awe of him.  I could see the love radiating between those two and I wonder if that’s how I looked at my dad when I was little.  And Joe adored her—still adores her.  I’m lucky to have him as the father of our daughter.

I know we grieve differently.  I want to post photos so I can hear people mention her.  So others can see the love they share.  And I want a  thousand reminders of her around me– anchors and butterflies and turtles.  But I know it hurts him.  We’re in different places.  Most times I look at the photos and smile (not every day-some days looking through her albums is just too much).  But I don’t think he’s there yet.  So we hurt each other with how we grieve even though it’s unintentional. We’re still learning to walk this road together.  And I hope that someday he can look at those pictures and see what I see: a bond between a daddy and his baby girl.  The one that had him wrapped around her tiny little finger from the moment she arrived into the world. I know he feels it. I know he misses her. I know it hurts.  But they love each other.  A bond that stretches between heaven and earth.

Dad, please watch over my little baby bird until I see you both again.  Wrap your arms around her. Share inside jokes and offer her Tang sandwiches.  I love you both. I miss you both, but I’m glad you’re together.

Mother’s Day was one of the most emotionally taxing days I’ve experienced since losing Zoey.  I don’t know why.  Maybe knowing she was here last year and gone this one.  Maybe the cumulative days of surviving without her here. Of trying to be strong when I really didn’t have the energy.  Maybe just knowing that being her mom is the best part of my life and that I wasn’t able to thank her for giving me that gift.

I don’t take for granted having her for one Mother’s Day.  Last year was amazing.  And it wasn’t because we did anything special or I received presents. Having her here was enough.  I was able to cuddle her, kiss her, tell her that I love her.  Dress her in an “I love mommy” onesie and a skirt her grandma made for her.  I’m incredibly grateful for that day.  I know some don’t get to spend even one Mother’s Day with their sweet babies.

I also do not take for granted that I was able to spend part of the day with both my mother and grandmother.  Two of the strongest, most resilient women out there.  The reason I was able to give myself completely to loving Zoey was because of the model they set for me.  I hope my mood didn’t ruin the day for them because I am so in awe of them and appreciate all the love they’ve given me and all they love they gave Zoey.

I want to thank the friends that reached out to me—the ones that sent cards or texts and showed me their love.  I know many people don’t know what to say.  But these people overcame the fear of saying the wrong thing and tried anyway.  And everything they said was perfect.  Because they remembered me.  And more importantly, they remembered Zoey.  I’ve often heard that people don’t want to “remind me” or “bring it up”.  You are not bringing up anything I haven’t already thought about.  And it heals my broken soul to know others still think of Zoey.  So please, if she ever crosses your mind, don’t hesitate to let me know.

I asked Zoey that morning to let me know she’s there.  And she did.  Our song on the radio.  A penny.  A cardinal.  I know it would be easy to explain these things away.  But I chose not to.  Because I needed them. I needed her. I am still her mother. I will always be her mother.  And it helps me to believe she sent me those cuddles.

  
My daughter should be one. We should have been planning a party. Princess themed? Finding Nemo? Would she have been walking? Have a few teeth?

Instead, Joe and I headed to the Florida Keys to celebrate Zoey’s birthday by the water. I needed to be by the ocean.

When we left for the airport on the one year anniversary of my induction, I slipped back to that day. To the nerves. And the excitement. Caught between two worlds. The one where I wanted to keep her safely inside me and the one where I couldn’t wait to see the little face she kept hidden from us during the ultrasounds. Knowing when we left that day that the world would be completely different on the other side.

We thought we’d have an April baby but she held out for May. When the doctor told us she wouldn’t make it through a natural delivery, we didn’t hesitate making the decision to have a c-section. We had not come that far to just let her go without a fighting chance. And Zoey had a flair for the dramatic even then. But when I finally looked into those stunning blue eyes for the first time, the world indeed changed. Life changed. Love changed. I changed.

I miss her with every breath. With every part of me. I have to focus on surviving one birthday at a time. Because if I think about a lifetime without her–year after year–it’s too much. On her 1st birthday I had to just focus on remembering those soft little bunny feet, bright blue eyes and the way she just fit against my chest. Joe & I sat by the water last night, talked about the day she was born and sent our wishes for her into the night sky.

Happy birthday Zoey. I hope you’re eating ice cream with your friends. I hope my dad made you giggle. I hope it’s beautiful where you are. We love you.

  

  

In 1967, Kathrine Switzer pinned on bib number 261 and set out to run the Boston Marathon– a race no woman had ever officially entered. Along the way, she was attacked by the race director trying to remove her from the course.  She kept going. She got blisters on her feet that caused her to bleed.  She kept going.  And she finished.

This weekend, Skirt Sports held a 261 Fearless virtual run in honor of Kathrine. So I also pinned on the bib number 261 and went for a run.  I may not have run 26.2 miles, but I’ve had my own challenges to overcome. That’s what the run was about– feeling fearless in the face of whatever challenge you face.

To me, it’s more than actually having no fear. I just don’t think that’s realistic.  It wasn’t for Kathrine.  And it isn’t for me.

I was afraid to be a mom.  Afraid of the sacrifices being a mom would mean. Afraid I’d be a terrible mother.

But I did it anyway.

I was afraid of carrying a child with a life limiting diagnosis.

But I did it anyway.

I was afraid of her death.  I was afraid I’d lose myself in grief.

But I couldn’t stop it.  I’ve gained more insight into who I am and who I want to be.  I live each day anyway. Bruised & battered but moving forward.  And forever grateful for the moments I spent with Zoey.

Kathrine says she “turned the fear and humiliation” she felt that day into anger.  And I turned my fear into love.  Fearless love for my little angel.

We went to Cracker Barrel for lunch today.  I thought it was a “safe” place– free from most of the triggers. But it betrayed me. While wandering through the store, I came across a display of little girls clothes. All of them with anchors.  And among the items was a little pair of shoes.  Blue.  With white anchors. And red elastic where the laces would be.  Just like Zoey’s dress.  The one she wore her first day at home. Navy Blue.  With white anchors.  And little red buttons.  It’s the last dress she wore.  The one I put on her after she died.  The one she wore as she left our home for the last time.

I wanted to buy them.  Because I don’t have that dress.  Because when they asked if I wanted her clothes and blankets back, I said no.  Because I didn’t want her to be naked. I didn’t want her to be cold. I handed her over carefully dressed and lovingly swaddled.  But why would I buy shoes for a baby that can’t wear them?  A baby that isn’t here.

So instead I cried all the way home.  And cuddled on the couch with Zoey bear until I fell asleep.  And I eventually told Joe about the shoes.  And that I wanted them. Because they remind me of her in that little dress.  I went back and bought them.  Because it doesn’t matter if it makes sense.