A while ago, I connected with Katie, a loss mama who runs Forever my Baby You'll Be out of Cornerstone of Hope in Cleveland. She read an article my sister wrote about Lydie and reached out to her, and then got connected to me too. We talked about our daughters, how we honor them through our projects, how we might work together. And soon she invited me to Cleveland to be the keynote speaker at Forever My Baby You'll Be's Bereaved Mother's Day Tea. I am grateful for any opportunity to talk about Lydia - and to share my visions for the Ohio Chapter of the Star Legacy Foundation too - and I was honored to be asked.
Here's what I shared this morning:
My daughter Lydia Joanne was born with a full head of dark hair like her dad’s, long fingers like mine, and a constricted umbilical cord that caused her death in my womb. She was loved so fiercely and anticipated so eagerly in the 8 months I carried her. Her big brother Benjamin, blew raspberries on my belly, her Dad dutifully put together her crib, and I dreamed of our lives together with the daughter I always wanted. I couldn’t wait to meet her – the little girl who would change my life forever.
The moment I was told “I’m sorry, there’s no heartbeat,” was the worst in my life.
The moment after I kissed my daughter for the final time, when I was wheeled out of the hospital with empty arms was a close second.
Leaving that hospital without my perfect baby girl, going home to a quiet house with the baby swing set up in the living room and the nursery’s closet full of colorful clothes – I thought Lydie’s story was over.
My husband and I soon figured out that the healthiest way for us to grieve was to talk about Lydie. To talk OUT LOUD about Lydie. To talk about our hopes and our dreams for our baby girl. To miss her out loud. Which sometimes meant making other people uncomfortable.
I blogged. I published entries every day, sometimes multiple times a day. I processed what had happened to me, to Lydie, to our family.
We set up a mini-Christmas tree just for Lydie. The first ornament I hung was the “Baby’s First Christmas” one my mom had purchased, and next the “L” one I had made soon after we decided on her name. She was supposed to be our Christmas baby, due a week before. When I shared about her tree on my blog, ornaments started arriving in our mailbox. From family, friends, and even strangers. Handpicked for Lydia with love.
We started a ritual of lighting a candle every evening at dinner. Gathering around the table, taking a moment to focus on our daughter and sister and saying the words “I love you, Lydie” and sometimes “We miss you, Lydie” out loud. To teach our constantly-moving son to pause for a moment and focus on his sister.
We dedicated a tree for Lydie by our family cottage, with the words “always in our hearts” on the sign above her name. At home, we planted Lydie’s Garden, with forget-me-nots, bleeding hearts, alliums, hyacinths. A rock inscribed with her name and another with the same words that were read at our wedding and Lydie's memorial, “Love never fails.” Friends and family bought tulip bulbs, lilac bushes, windmills, glass flowers, garden plaques. Things that made them think of Lydia. They dug up their own flowers to transplant. Lydie’s Garden came to life, blooming colorfully.
We learned to see Lydie in the stars and in the pink of the evening sky. Sometimes even in the wind in our hair.
We fundraised to donate a Cuddle Cot, a cooling unit to allow babies to stay with their families longer and create more memories together. I wrote a letter, encouraging parents to sing to their babies, read to their babies, bathe their babies. That’s my husband’s biggest regret – that he didn’t bathe Lydie. I wrote about how we had little time with Lydie but how the memories we do have we cherish. How we’ll always wish for more time. On Lydie’s first birthday, we returned to the hospital where she was born to dedicate that Cuddle Cot. The staff surprised us with a bit of a party for our girl. It was a celebration of love – and missing of course, but most of all, of love.
I regularly hear from families who have used that Cuddle Cot, telling me about the difference Lydie made for them. How that Cuddle Cot, inscribed with my daughter’s name, allowed them to have the time with their children that we weren’t able to with Lydia.
And last year, after a terrifying and anxiety-ridden third pregnancy and ultimately, the safe arrival of Lydie’s little sister, I started getting involved in advocacy work. 26,000 babies a year are stillborn in the United States. That’s 1 out of 160 pregnancies. That’s far too many. Many, like my pregnancy, are low-risk with no warning signs. Stillbirth has been called the most understudied medical issue of our time. More research is desperately needed.
My first undertaking was planning a race called Lydie’s Loop: Steps against Stillbirth. I spent six months pouring my heart and soul – and A LOT of time – into telling Lydie’s story to businesses and individuals asking for donations of food and water and prizes for our raffle, spreading the word on social media, making signs, and running in circles trying to map out 3.1 miles. I worked with a friend to design the logo, using Lydie’s own footprints wrapped in a loopy heart. I did a happy dance every time a registration email loaded in my inbox. I ran around collecting bananas and granola bars and water and balloons and a sound system.
On the day of the event, I was surrounded by almost 300 participants, many wearing their yellow t-shirts with my daughter’s name and footprints. And wearing their own children’s names too, forming a star on the back underneath the words “We will always remember.” Kids got their face painted, stood in line for balloon animals, families stuck their tickets in paper bags, hoping to win the memory box or American Girl doll, teams of people took photos.
A few families pushed their Molly Bears, bears the same weight as their babies, in strollers. Another mom carried a photo of her son as she completed the one-mile walk. There were
smiles and there were tears, but ultimately, there was community. So much community and support and love, for all these families, whose lives have been changed by little ones gone too soon.
|(At this point, I showed this video)|
I don’t get to mother Lydie the way I planned, but I still get to mother her. She is an important part of our family and she remains an active part of my life. I get to make sure her short life has an impact on the world.
I’ve continued my advocacy work, founding the Ohio Chapter of the Star Legacy Foundation. Star Legacy is a national organization that is dedicated to reducing pregnancy loss and neonatal death through advocacy and research and also improving care for families who experience these tragedies.
Star Legacy is based out of Minnesota, and after losing Lydie, I found the local support was lacking. My goal is to bring more of this support, awareness, and advocacy to Ohio families through the Ohio Chapter.
This month, we are hosting a conference for healthcare professionals about perinatal loss. The goal is to educate nurses, doctors, and even office administrators about how to best care for a family who is facing a loss.
Our Chapter is continuing other projects, like helping families get the proper documentation that their babies existed. Just yesterday, I received Lydie’s birth certificate in the mail. That piece of paper is remarkably important.
You can find out more at starlegacyfoundation.org or by following our Ohio Chapter of the Star Legacy Foundation page on Facebook. There are also some flyers up here.
I am busy planning our second annual Lydie’s Loop which will be held in Columbus October 7th. Which I invite you all to, of course! There are flyers up here.
Coincidentally – or perhaps serendipitously - today is Lydie’s half-birthday.
Today, Lydie would be two-and-a-half.
No longer that baby I held in my arms. A big girl, speaking complete sentences. No doubt she inherited some of my fire and her dad’s gentle practicality. I picture her often. I see her in the space between her siblings. I miss her so damn much.
I heard once that this experience – of losing my beloved child – could make me bitter or make me better. At this time, the idea of losing my daughter and becoming better seemed ludicrous. Laughable. Absurd. I had no idea how to take this devastation, this crippling grief, and turn myself into a better person.
What I’m learning is that it’s not the grief that is going to make me better. It is my daughter.
It is Lydie. My much-loved, much-wanted, beautiful daughter.
I wish I could go back to myself during that cruel wheelchair ride out of the hospital and car ride home and tell myself: “This is not the end of Lydie’s story. This is not the end of the relationship with your daughter.”
All the plans I had for Lydie, for our family? They don’t get to happen, not in this lifetime.
And I know I will grieve that for the rest of my life.
But like any other two-and-a-half-year-old, Lydie’s story has just begun.
But like any other two-and-a-half-year-old, Lydie’s story has just begun.
|With my mama, Lydie's Oma Jo|
|With the founder of Forever My Baby You'll Be, Katie|
|My mom and my sister loving me and loving Lydie|
|Sending all our love to Lydie|