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.  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.

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