Today the moms of the girls I consider Zoey’s sisters gathered to meet and celebrate a new life.  A little rainbow baby.  Hattie’s little sister.  And we laughed.  And we cried.  And we talked about our girls.

The three of us have only all been together twice.  Once when we met baby Evey.  And today meeting Matilda.  But it’s a safe place.  Where we can talk about our girls and nobody will try to change the subject.  There are moments you could have looked in that room and it would look like any group of friends greeting the new baby.  Smiling. Hugging.   Putting hats and bows on her perfect little head.  But if you stopped to listen, you’d hear the other side–the catch of sadness when we told stories of our girls.

And yes it hurt.  She reminded me of Zoey in some ways—her long toes.  The cute little baby noises.  The way she turned her feet.  But she was so much heavier.  And holding her reminded me of the emptiness of my own arms.  I can only imagine how her mom and dad feel right now.  They’ll always feel the loss of Hattie.  But through the darkness there is light.  There is a rainbow.

Rainbow Babies are the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it does not mean that the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and the clouds. Storm clouds may still loom over but the rainbow provides a counterbalance of color, energy, and much needed hope.

And Matilda is amazing.  Beautiful.  Wonderful.  8.9 pounds of hope.  Hope for joy again.  Hope to smile. Hope to watch her grow.

I cried on the way home.  And as I reached up to wipe the tears, I noticed my hands smelled like baby—that sweet, pure smell.  And at that moment, the song I often sang to Zoey came on the radio.

I just wanna make you laugh

I just wanna see that smile

Babe, we’re only here for a little while

I just wanna hold you till we fall asleep

I want love. I want us. I want you. I want me. I want peace.

It was a beautiful day.  Warm, sunny. Perfect for time outside.  After work I opened the back door and almost stepped out to sit on the patio until Joe got home.  But I stopped myself.  Because that’s what Zoey and I would have done.  It’s how we spent many evenings last summer.

There are many things I haven’t done since she left us.  I slept in “our” chair for about a week after she died, but I haven’t sat down in it since.  I haven’t walked the neighborhood like the three of us did so many times.  I haven’t sat outside waiting for Joe to get home.

I read my friend’s blog about her daughter’s life.  And about her last moments.  And I thought about “the last time” with Zoey.  The last time we walked with her.  The last time we bathed her.  The last time I sat outside with her.  The last time I looked in those beautiful blue eyes.  The last time I felt her heart beat.

I’m kicking myself for not journaling more during her life.  I took photos every day, but I didn’t write notes about what we did or the little things that made her who she was or just about our daily life together for those four months.  It’s now my mission to write down as many memories as I can.  I want to remember the firsts, the lasts and everything in between.

Today is Trisomy 18 Awareness Day.  I am aware. And it sucks.  And here are a few other things I’m aware of:

I am aware there’s not a damn thing you can do about it.  It’s not a preventable condition.  No vitamin will help.  No vaccine will prevent it.  No amount of fruit or vegetables or exercise will have any impact on the outcome.

I am aware that some care providers will recommend to moms and dads that they should terminate their pregnancies.  I am aware that some people will make this choice.  But I am aware this is not the only option.

I am aware that people make different choices for the care of their child after their birth.  Some pursue surgeries.  Some babies stay in the NICU.  It forces parents to make difficult decisions that they have to live with and that they will question for the rest of their lives.

I am aware that it is not my place to judge them for their choices.  And it isn’t yours either.  I am aware that every child is different.  Every family is different.  And every decision is made with love.

I am aware that although in my heart I know we made the right decisions for Zoey, my mind will still cast doubt.  And I am aware that wondering “why” and “if only” is not the path to stay on for long.

I am aware I will never really understand in this lifetime.  But that when I see her again, I will not need to understand.

I am aware that T18 can cause many birth “defects”.

But I am aware that Zoey had the sweetest little in-turned feet.  And they were the softest things I’ve touched.  And that now I think other babies feet look strange– hers were all I knew.

I’m aware that T18 can cause cleft lips and pallets.  And that people can be insensitive– that they’ll hold your child weeks after her birth and say “she’s pretty even with the cleft lip”.  And I am aware that my daughter is beautiful.  PERIOD.

I am aware that T18 causes issues that can take their lives.  Like heart defects.  And I’m aware that sometimes a mom will hold her baby girl as that heart beats for the last time.

I’m aware that I held my daughter, bathed her, changed her diaper, fed her, read to her, danced with her.  I watched her raise her eyebrows when curious and scrunch her forehead when mad.  I would see her bright blue eyes light up with wonder.

I am aware I would do it all again just for those moments.

I am aware that she made me a mother.  And that I will always be her mother.  And that I will always search for ways to mother her.

I am aware of never ending, all consuming love.

I am aware of T18.  I am aware it took my daughter’s life.  But I am also aware that it gave me the chance to cherish every moment. To experience love in it’s purest form.

My friend is participating in a project for the Pregnancy After Loss Support group.  Similar to what we did in October, there’s a prompt for a daily topic this week.  It’s meant to express the joy and fear of having another child after losing so much.  She’s expecting her third child this month.  Nineteen months after losing her daughter.

Today’s topic: Courageous Mama.  And I know she doesn’t think that’s true.  But it is. For so very many reasons.  And not just because she’s chosen to have another child, although I think that takes a hell of a lot of courage after losing your daughter.  Other moms read too much in the books and are afraid of what can happen.  But for us it happened.  It’s a rational, real fear.  Choosing to find joy in life while forever grieving the loss of your child is not easy task.  And she went back into the fire to hold my hand through our journey.  It takes a tremendous amount of courage to open yourself to another mom who is in so much pain.  You rip open wounds.  You relive the worst moments of your life.  But she sees the beauty–the purpose– in that pain.  And she does it over and over again.

But it’s more than that.  It takes courage to jump in without hesitation to loving a child you know you’ll lose.  It takes strength to carry a child knowing at any moment their heart could cease to beat.  Walking into the hospital to deliver your child—not knowing if they will take a breath in this world or not.  And loving, without any reservation, knowing your heart will inevitably be ripped apart.  And I know she did this, the same as we did for Zoey.

Sure there are things we wish we could have done with our daughters—a lifetime full of missing them.  But that’s not the same as regret.  And my bet is there are people that will someday look back and regret reserving any of the love they could have shared for our little ones.  But I do not.  It is a choice. You can choose to love completely–to dive head first, all in or you can choose to reserve your heart.

Fear can hold you back from so many things.  It could have kept us from loving our daughters completely.  But it didn’t.  Loving without hesitation.  Loving her every single moment with every fiber of your being.  Preparing ourselves to love instead of to lose. No regrets.  Courage.

I made it through 13.1 miles once again.  In some ways, it was the hardest, but in many the easiest half marathon I’ve completed.  It was interesting to me: I’ve completed half marathons before so I knew what to expect physically, but this one was different.  I was running it for Zoey.  And for her friends whose names I wore that day too.  So the emotional aspect was more charged than usual.  Here’s my recap of the race and days surrounding it.

I was in Jupiter, Florida for work in the days leading up to the race weekend.  I flew into Orlando and drove there so I was able to stop at a beach on return trip. Since I had no timeline on Thursday, I took my time returning to Orlando.  I randomly selected a state park to stop.  Around 10am, I pulled into the drive—greeted by a sea turtle sculpture—just another nod to my little girl.  I was the first one to arrive that day—it was windy and cold so I’m not surprised.  But this also meant I had the beach to myself.  I stopped in the restroom on the way to the beach.  And when I was exiting the stall, a sand covered, weathered penny fell to the floor. I can’t explain where it came from. I didn’t have anything with me but my cell phone and camera and I hadn’t been to the beach yet. I wandered to the beach to say hello to Zoey.  And while it was windy, it was peaceful being there alone.  I collected a few sea shells, took a few pictures and spent a few moments alone. It was what I needed to refocus before heading to the run.

I was excited to pick up my bib number and take in the experience of the race expo (and don’t tell Joe, but I might have done a little shopping while there as well).  It is the biggest expo I’ve ever seen—spanning two buildings with isles and isles of sparkles, shoes and tutus.

Friday morning I attended a breakfast at Epcot for the Children’s Miracle Network runners.  I met other runners, watched a video that made me cry, told the people at the table Zoey’s story which made them cry and met a few princesses who then made me cry again.  I told the story of going to Disney last year and meeting Cinderella and Aurora and telling them Zoey’s story.  The progression of pictures taken while meeting them was priceless.  They got their revenge this year.  Snow White and Ariel decided to ask about my “Zoey’s Crew” shirt which in turn led to them telling me how they’d think of her every time they dance and sing.  I’d call them a not nice name, but it was very sweet.

Joe and my mom arrived Friday afternoon and we ended up back in the same room where I’d had breakfast for the Pasta in the Park party.  We ate, met a few characters and took in the fireworks show.

We spent Saturday taking it easy. I didn’t want to wear out my legs too much before the run!  Sunday morning was chaos.  I was up around 3am and in line for the bus before 4am.  I stood talking to a girl dressed as Ana who wanted to tell me all about her paleo eating while I was dreaming of the cinnamon rolls at Gaston’s tavern.  The bus got stuck in traffic, caused in part by a stalled car.  I missed the actual start of the race. I heard it over the loudspeaker and saw the fireworks go off, but I was still walking toward the start line.  Luckily I arrived to my corral before it took off.  In hindsight this may have been for the best.  While I was certainly anxious about getting to the start, I didn’t have time to stand around and be nervous.  And then it was time to cross the start line.  And endure more than three hours of running.  Alone.  With only my thoughts.  Disney did a great job of distracting me—there were thousands of people around me at all times, bands, cheerleaders, characters and of course a little castle to run through.  The first few miles passed quickly because I was excited about getting to the castle.  The course winds around Magic Kingdom so you run through the castle and out to the front.  I definitely stopped for pictures and I was able to spot my mom and Joe.  And then the course returns to roads.  With little to really look forward to until you reach Epcot (sure I spotted Mary Poppins and Genie among others but chose not to stop—I really wanted to get done and not get picked up by the bus!).  There were a few moments I nearly cried—not from the pain of running, but because I’d think of Zoey and all the little ones listed on my armband and their moms and dads.  I’d pass a dad holding his little baby with a sign that said “hurry up mommy, I’m hungry”.  I’d wish she was there.  Or I’d just remember those short months that I got to hold her.  And I’d miss her.  But I held it together.  I wanted to finish and be strong for her.  I knew I was slow, but knew that after what I’ve been through it didn’t matter as long as I finished standing up.  When I knew I was close to the finish line, I pulled Zoey’s picture from the pouch where I’d carried it (along with the beach penny). And this is where I had the hardest time keeping it together.  I had to focus on breathing and calm myself.  I know it’s just a half marathon—but it meant so much more to me.  Running it for Zoey.  Getting out of bed to run on days when I just wanted to hide from the world.  Pushing myself and surviving the last year.  I stopped for a quick selfie with Mickey Mouse and crossed the finish.  And that was it.  I’d done it. I’d trained for months, raised money, recruited members of Zoey’s crew and told Zoey’s story as often as I could.

Thank you all for your words of encouragement, the photos you sent, your donations and for being a part of  Zoey’s Crew.  I want to send special thanks to my beautiful friends Jamie and Jeanette who were there for me for all those training runs and trail therapy.  For me, race day has never been the hard part—it’s getting out there over and over and over in the weeks leading up to the run.  They made it easier.  They made it happen.  And they made sure that the physical part of running 13.1 miles was not an issue that day.  I can’t repay anyone for the all the sweet gestures and kindness they’ve shown.  It means the world to me to have people remember me and my beautiful daughter.  And having my mom and Joe at the finish was priceless.   I needed the two people that are my biggest supporters and who gave themselves to loving that little princess unconditionally there at the finish.

Our children deserve a voice.  They deserve to have their names said aloud: Hattie, Evey, Natalie, Allison, Connor, Charlotte, Kupyer, Thomas, Jackson, Baby Light, Caleb, Baby Heinle, Margo, Stan, David, Todd Jr. Charlie, Robert and all the others.  They deserve to have their stories told and their lives matter.  I’ll continue to tell her story.  I’ll continue to remember her in everything I do.  In everything I am.

I feel I’ve been unraveling the past few weeks.  And I’m left wondering if there’s something I’ve done wrong somewhere in this process.  I’ve never been one to cry easily, but that’s changed.  I’ve obviously cried over Zoey many times.  But these are different tears.  Irrational tears.  My cellphone decided to vibrate itself into a pool of water in my bathroom sink.  I came out of the shower to find it floating facedown, the alarm I’d failed to turn off still buzzing.  But it soon gave up and was fried.  And I cried. Over a phone. It all seemed like too much.  That the universe was conspiring against me.  Why couldn’t life just be easy for awhile?

Training for the race has unraveled too.  I did so well for so long.  But in the last few weeks I’ve missed many runs and cut others very short.  I’ve been fighting foot pain.  I cried after I Ieft my training partners on the trail on our last run together.  And I cried again when I pulled my phone from the pouch I wore and a penny fell out (I’ve been saving the “pennies from heaven” I’ve found over the last week to press at Disney.

I lost it again when I woke up the other day, checked in for my flight to Florida and then saw they’d updated the forecast to snow– lots of it.  I was overwhelmed with anxiety.  I knew I’d spend the next 24 hours constantly checking the weather and then freaking out over someone driving me to the airport in the morning.  And so I cried as I gave a credit card number to the airline and moved up my flight.

And I welled up again when Joe dropped me off at the airport.  We’re often apart so why was I feeling this way?  I knew I’d miss seeing Zoey’s pictures around the house.  Going ten days without cuddling Clyde or Zoey bear.

And the sunset.  I heard once that sunsets are created when all the babies in heaven get together to paint the sky.  So I tell her what a beautiful job they are doing and I cry.

But why now?  Why after five months of keeping it together–of going to work and the gym. Of training and being alone.  Of keeping my tears to the moments that at least kind of make sense.  And so I wonder if I’ve done this grief thing all wrong.  What if I should have stayed off work a little longer. If I should have stayed in bed some of the days I wanted to.  Should I have screamed or raged a little more?  But you don’t get a guide book.  Nobody really wanted to tell you about the ugly truth. They don’t tell you about the moments you pull into the garage and consider leaving on the ignition (please don’t call a hotline on me– thankfully these moments have been fleeting.  But I know for some moms and dads they linger).  That you’ll look at your husband and wonder if your marriage will survive (I believe it will– but it isn’t always easy).  You’ll wonder who your real friends are and who is there to be part of the story.

They don’t tell you that you’ll wonder if all your friends have to be child loss moms too– because you can be completely honest with them without getting “the look”.  And you’ll wonder if you can or should have another child. That you’ll wonder if you’re just trying to replace your lost child.

They don’t tell you that you can’t turn off your wandering mind.  And maybe that’s why I feel like I’m unraveling now.  That I’ve kept everything knitted together but the nagging thoughts and sleepless nights wear on you.  And I’m tired.  Physically and emotionally spent.

I visited  the beach when I made it to Jupiter.  I told my sweet baby hello.  I hope to stop by the water again tomorrow before heading to Disney for the race.  Feel the peace of the waves, re-center, pull myself together again and then get ready for the run I’m doing  for my little princess.  And I’ll tell myself it’s okay to cry.  Because it is.

P.s. Please don’t think this means you need to worry about me on race day. You don’t. I have no doubts. If I can survive the last few months, 13.1 miles is nothing.

I was honored on Saturday night to speak on behalf of Friends of Wings.  They support the pediatric hospice group that served Zoey.  Below is the speech I made (while trembling the entire time!).  But it also got me thinking—we were lucky to have the opportunity to bring Zoey home with us.  It’s hard to imagine anyone looking at our story and being jealous.  But they are—there are families that don’t have thousands of pictures and videos of their child.  There are those that didn’t get to make molds or footprints of their little feet.  I do not take one moment with Zoey for granted. My heart is with those who didn’t get the same opportunities as us.  Joe and I were so very blessed for so many reasons.

It was also a good time for me to reflect on the choices we made and to once again remind everyone that every situation is different.  Every family. Every child.  Please do not look upon the choices we made or the choices another family makes and believe you would have done things differently.  We are all traveling an unthinkably hard journey and should be given nothing but love.

I am honored that I was invited to share even a small part of our story. If you ever have the chance to support this amazing organization in any way, please do.  www.friendsofwings.org

Thank you for allowing me a few moments to talk about my beautiful daughter, Zoey and our wonderful friends at Wings.  When my husband and I found out we were expecting our first child, we were thrilled.  We immediately began making plans and dreaming of our future with our little one. We were devastated when we learned at an ultrasound that things were not perfect.  We soon received the diagnosis: Trisomy 18.  A condition considered by some to be incompatible with life.  The statistics are ugly.  Of those babies that make it to a live birth, less than 10% survive to their first birthday.  When you’re told your time with the most amazing thing in your life will be limited, your only choice is to make those moments count.  So while I was pregnant we read to her, took her to the Zoo and Grant’s Farm and to Disney World.

We were obviously elated when she arrived and took her first breath.  I will never forget the moment I first laid eyes on that gorgeous little bright eyed baby girl.  Zoey did well those first few days in the hospital and was released to come home with us.  And that’s what I so desperately wanted—I wanted to cuddle her, hold her.  I wanted her to pet her kitty cat and feel the sun on her cheeks.  I wanted her home.  We were set up with Wings—the pediatric hospice group.  I have to admit that I was not pleased the first day they arrived at my home.  I’d just brought this beautiful child home with me and here were these nurses—from hospice.  The weight of it was overwhelming.  But they soon became more than just nurses.  They were my friends: A group of people I would never choose to have in my life but who I desperately needed.  And they loved Zoey.  I think nurse Linda would have stayed all day with us if she’d been allowed.  There were a million little ways they helped us.  Advice, reassurance, a hug.

But it was more than just nurse visits.  The Lumina program helped us create even more memories with our daughter.  Not all of our projects turned out perfectly—but we tried.  They gave us a footprint kit—Zoey had tiny little feet so when we attempted to press them into the mold, they didn’t quite turn out.  But my husband and I laughed that afternoon— and I’ll always remember the time spent having fun with our daughter. Our Lumina friends also video taped me reading one of our favorite books to Zoey.  And helped me ink her little footprints into that book.

Their goal is to help make memories with your child.  And they did so wonderfully.  I knew that I had a group of people determined to make whatever time I had with my daughter as peaceful and beautiful as possible.  The nurses reassure you that you’re doing everything right.  The neonatolgist walks in, sits on your living room floor and tells you’re making the right decisions.  The social workers and chaplains call just to see how your day is going.  And someone shows up with a camera and an inkpad and helps you make memories. There have been many moments I look back on our time with Zoey and wonder if it was all a dream.  And that’s when I can look at the photos and watch the video.  I can see the little footprints or run my hand across a ceramic mold and know she was here. She was real. 

I often worry that when I tell Zoey’s story, people will think of it as a failure because she’s not here.  But Zoey was an amazing little girl and she continues to give us many gifts in this life.  She continues to teach us about love and about hope. There’s a saying that goes “every life no matter how brief forever changes the world”.  Zoey certainly changed my life and I hope by telling her story, she’ll change others too.  I am blessed for the time I spent with my daughter. Yes it hurts desperately, but I wouldn’t give up my time with her to be free of pain now.  Her life had meaning.  Her life continues to have meaning.  And I am forever grateful to the people and organizations that recognized her importance and aimed to make her time with us special.

I’d like to read to you the last bit of the book I read to Zoey and that hold her footprints.  It’s called “God Gave Us You”:

Little Cub closed her eyes, said her prayers and heard Mama whisper “Good Night”. She felt happy and safe because God had give her—little her—to Mama and Papa and they wouldn’t trade her for the world.  Because God gave us you Mama had said.  Because God gave us you.

Once again I find myself at a loss for the proper words.  What do you say when the world makes no sense?  Just as I said when Zoey left us, the world seems a little darker, but the heavens are brighter.  Baby Evangeline passed away.  I was blessed to meet her and got to touch her gorgeous little face.  A soul sent to us only for a short time, but no less beautiful.

I hope Zoey was there to greet her at heaven’s door.  That Zoey and Hattie and Allison and Natalie and all the other babies play together now.  I hope they are showing Evey where to get the best ice cream. And which clouds are the most fun to bounce around.

I know her mom and dad’s path won’t be easy. They’ve joined the crappiest club ever.  I’d say “welcome” but let’s be honest—nobody wants to be a part of this and I wish they weren’t members.  We don’t have a secret handshake—our hands are too full of Kleenex.  But I want them to know they are not alone on this path.  And that whatever they are feeling, someone else has been there.  They aren’t crazy.  We’ve had those thoughts too.  And we’re here– ready with a hug or a punching bag.

I hope they look for the signs their little one will send—whether they come in the form of butterflies or purple dots in pictures, pennies or hidden Mickey’s.  And I hope their heart smiles when they see them.

To Evey’s mom and dad: I know the pain is immense.  I know it is overwhelming and ugly.  But I also know you don’t regret having her.  Our little ones are worth it.  Thank you for letting me spend a few precious moments with her.  My life is richer for having met her.  All my love to you.

Tonight my thoughts and prayers are with a new friend.  While we’ve never met in person, we’re bound by a common thread.  We share a path that only those in similar situations can truly understand.  Her daughter was also diagnosed with Trisomy 18.  She will be induced tomorrow.  I slip back to that time in our lives easily.  The reluctance to set a date for induction because of all the implications that brings.  Teetering between the anticipation of meeting your child and the intense fear of the unknown.  Wanting so desperately to keep her in where you think she’s safe while needing to touch her face.  As you know we used the symbol of anchors for Zoey—a symbol of hope.  Our hopes changed for her so often throughout my pregnancy and her life.  Hope she’d make it to a live birth.  Hope the doctors were wrong. Hope she wouldn’t need extreme measures to keep her alive.  Hope there were decisions we wouldn’t have to make.  Hope we’d have her one more day.  Hope that she’s somewhere beautiful now.  So tonight as my sweet friend waits to meet her precious daughter, I hope she finds strength.  I hope she’s able to see the beauty in every moment.  Hope she has the same intense love for her daughter as we have for Zoey—because it’s worth it.  Hope for one more day.  And I hope tonight you can send her family and their sweet baby all the love you’ve sent us.

“We have this hope as an anchor for the soul, firm and secure”

While training for the half marathon, I’ve noticed the similarities of training with the journey through grief.  Last Monday I had a “good” running day. The weather was mild for December, I ran with three of my dear friends.  And because one of them really pushed me, I had a good (for me) pace.  I felt good after four miles.

And then there was Saturday’s run.  A cold, rainy nine miles.  I was miserable.  Despite still having good company, I could not muster a positive outlook.  I was soaked, weighed down by the constant rain.  My knees hurt, my back hurt. My pace was disappointing.  For the first time since my official training began, I questioned my ability to complete 13.1 miles without getting kicked off the course.

That’s how the last four months have been.  Some days seem just a little easier than others.  Just a tiny bit brighter.  I always carry the sadness, the heartache.  But every now and then I feel stronger to bear the weight of it.  There are days I can look at the pink streaks in the sky as the sun sets and smile thinking of her. There are days I feel strong enough to pick out an adorable anchor outfit for my friend’s baby girl.  But just as quickly as the sun peeks through, the storm clouds roll overhead. Life is darker.  I’m weighed down, negative. I doubt my strength.  The moments come with no warning.  I have to avoid the baby isle like the plague.  I break down and cry in the shower.  I question how I can possibly live the rest of my life without my daughter.

The constant is Zoey and my desire to live a full and beautiful life for her.  I know there will be days I feel defeated.  And I know there will be days where I feel her spirit and I’m able to see the joy in life again.  I know that I have to remind myself that happiness, love and experiencing life mean that I am remembering and honoring her.  Finding joy does not mean I’m forgetting.

Seven weeks until race day.  And despite my terrible run on Saturday, I will make it through. Zoey will push me. I can’t wait to run through the castle for her. And I hope she’s proud of her mom for showing up on the rainy, cold, dreary days and pushing through.