Avery's Legacy - A letter of love, wisdom and hope for a grieving audience

Remembering the Children ~ By Cathy Decker

 Alberta Children's Hospital Memorial Celebration, May 2018

Avery chalk love.jpg

Hello, my name is Cathy Decker.  I'd like to start by acknowledging the courage and strength that each of you is demonstrating in coming today.  I’ve learned that grieving and mourning our children is some of the hardest work we will do in our lifetime.  The “simple” task of getting up, dressed, and going out is not so simple. I recognize how difficult it is to be here today. 

unnamed.jpg

On March 9 2017, my beautiful daughter, Avery Violet Decker, laid down for an afternoon nap at her day-home and never woke up again. She was 13 months and 1 day old. She was strong and so full of life.  Avery loved everybody and everything. She loved holding hands with her friends, giving her kitties hugs and kisses and sharing her snacks.  She was the kindest soul I’ve ever known.  She walked at nine months and was just starting to do summersaults. How could she just lay down for a nap and never wake up?  

At the time, Avery was our only child, the centre of our universe and everything to me.  To say that I am heartbroken would be an understatement.  My world imploded: everything I knew to be right was shattered.  My beliefs of the world have been questioned in the deepest way. 

During the early days of my grief, I felt paralyzed.  I had no desire to carry on in this life.  I just wanted to be with my girl.  I hated that the world was moving on without her.  I desperately wanted to go back in time.  I longed to hold her in my arms, feel her warm breath against my neck, kiss her chubby cheeks, and hear the sweet sound of her laughter. 

I have had a lot of overwhelming thoughts: I’ve thought a lot about death and dying, how could I not?  Death was my reality.  In my experience, I found my darkness to be consuming. I felt like I as going crazy.  After Avery passed, I felt so alone and isolated even though my friends and family surrounded me. I felt like time had completely stopped for me. I was standing still and yet the world was spinning all around me. It was so clear that the world kept going. I was mad. How could people continue to live? My child had died. How could I ever continue to live? 

Avery purple pansy.jpg

I found it impossible to find the right words to describe to my friends and family how I was feeling. Words do not exist to describe how a parent feels when their child dies. A quote I recently read is a testament to this. It says: 

“ A wife who loses a husband is called a widow.

A husband who loses a wife is called a widower.

A child who loses his/her parents is called an orphan.

There is no word for a parent who loses a child. 

That’s how awful the loss is”

I truly believe a part of me died along with Avery.  In that same instant I was gone too.  I was physically here still but a part of my soul left with her.  I was not the same person.  I was trapped.  I felt like I was trapped in a blizzarding snow globe of despair, confusion, shock, disbelief and tremendous grief.  As I watched the world move on, I kept asking and saying the same things over and over again.

“How did this happen?”  “Is this for real?”

“What am I supposed to do now?”  “How do I keep living without my child?” 

In the words of a fellow bereaved mom, “ who could ever know me if they didn’t know you?" 

It broke my heart even more knowing that the world would physically see me but not Avery. I had to come up with a way to change that. That’s when the idea of making a button with her picture on it came to me.  I now wear this button proudly.  I have had many strangers ask me about my button. When I first stated wearing it, I was so scared. My stomach would be in knots, I could feel my heart race and my blood pressure rise.  I would quickly say, “this is my daughter” and change the subject, praying that they didn’t ask any further questions. 

Avery button.JPG

Then something happened.  As the weeks and months passed, I started to look forward to people asking me about it.  I wanted to tell people about her.  My fears started to lessen and the knot in my stomach was looser.  I felt like it was my duty, as her mom, to share how beautiful she was with the world. My answer had transformed.  I now said, “this is my daughter.  Her name is Avery.  This is a picture of her at her first birthday party.  She was so proud and had so much fun playing in her car.”  It feels “nice” to be able to talk about my daughter.  Now, that’s not to say it isn’t difficult, especially when the conversation leads to questions like “where is she today?” but I have learned that grief is difficult; loosing a child is impossibly difficult.  For me, talking about her is how I keep her memory alive, so I have actively made the choice to preserver through the difficult questions in order to have the opportunity to talk about her. 

Sometime when people ask where she is, I say, “she is with her great grandparents”: I believe it’s the truth.   I have learned that this, wearing a button, is an example of how I am able to still “parent” Avery. 

It’s been 64 weeks and 2 days and as I stand here in front of you, I still cant believe it. My mind knows its true but my heart won’t accept it. 

My only option is to parent her in a new way, keep her memory alive, and do things to make me feel close to her. 

I wear purple for Avery because her middle name is Violet and her birthstone is Amethyst. I wear a locket with her picture in it. I give the name “Avery” at Starbucks. My license plate on my car is AVERY16 (for the year she was born). I plant purple violas and pansies in my garden. We bought a memorial bench at her favorite park. And I even write her name and draw purple hearts with sidewalk chalk along the pathways of Auburn Bay. 

For me, it’s the little things.  Everybody is different.  There is no right way or wrong way.  My only “suggestion” is to be authentic - you need to do what feels right for you in the moment despite what pressures or judgments you may feel to the contrary.  

Avery starbucks.JPG
Avery plates.JPG

I have come to a place in my grief where I am able to help others and give back.   When I think of the person Avery was, the words “loving” and “kind” come to mind first. I want to create a legacy for Avery.  I want to honor her by spreading love and kindness in her memory. My husband and I started a program at SHC where we donate Avery’s favorite book,  “I'd know you anywhere my love” by Nancy Tillman, to all babies born on her birthday- February 8th. Our hope, for the future, is to expand this program to all hospitals in Calgary.  

Over the past several months we’ve been putting together and donating bereavement boxes for families who have lost a child. Items included in the boxes are intended to be meaningful, helpful, and promote self-care. Our inspiration for this came from another bereaved mom, a friend now but a stranger at the time. Her gift to us was so impactful. It is our hope that we can offer a small amount of light, in Avery’s memory, to other families in their time of darkness.  We donate Avery’s boxes through SIDS Calgary society as well. 

For the family and friends in the audience, thank you for coming here today to show your support. We know you want to help in any way you can and showing up today means so much.  There is no quick fix.  There are no magical words to be said to help us “feel better”. 

For me, the support of my friends and family continues to be so important. I have found that the people who walk beside me without advice or judgment to be of the most value. The friends I appreciate the most are the ones who put their own opinions aside and simply hold me as I cry and listen: knowing that I don’t need a inspirational cliché to make me feel better. My biggest fear is that Avery will be forgotten. I am so grateful to those who continue to speak Avery’s name, honor her memory and help me further her legacy. 

For me, having another child has brought joy back into my life; however, this new joy does not eliminate the pain. I am still learning how to hold both joy and sadness in the same moment. I often explain that it is like as holding a boiling ice cube. Imagine that for a second- a boiling ice cube... I think that is what surviving child loss is: the seemingly impossible, but I keep trying and I keep working. It is my hope that by sharing Avery and my experiences with you, I was able to plant seeds of hope for your future.  

Cathy Decker