Friends of Wings

zoey dress

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.

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.

Evangeline Grace

every life

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.

We have this hope…


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”

Pink sky

Pink sky

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.