October 14, 2017 would have been Zachary’s 7th birthday. I find myself thinking: has it really been that long? I remember the day of Zachary’s birth as if it was yesterday. I know that may sound cliché, but it’s not – partially because of post-traumatic stress and partially because we found out six weeks before that Zachary would die.
When I was blissfully naïve 25-week-ish pregnant mama I received the news that changed my life forever.
The doctors told me that my unborn child had a random genetic abnormality called Tublerous Sclerosis Complex. While people can live with TSC – which allows tumors to grow in the body – my baby had a particularly large tumor around his heart. Even in utero, Zachary’s heart was failing him, crushed by the tumor. A baby’s heartbeat should be around 120 to 160 beats per minute. Zachary’s was at 50 BPM.
My husband, Aaron, and I spent every day of the next six weeks that followed at the hospital undergoing tests. Like us, the doctors were investigating every option to save our baby. In the end, there was nothing any of us could do. Aaron and I decided to continue our pregnancy, hoping for a miracle.
Zachary was born at 30 weeks gestation. He did not open his eyes. He did not cry. He moved a little in my arms – which Aaron happened to capture in a short video clip. I discovered that clip just a few years ago. When I saw it, I began to weep and I was immediately back in that moment I remember so vividly.
This brings me back to the reason Zachary’s death still feels like it was yesterday. Knowing that my baby would not live – even if he was born alive – snapped me into a state of hyper-awareness. I intentionally lived in every moment, observing as much as I could, and, at the same time, recording all the visual and sensory details in my journal. I didn’t want to forget anything. Now, I believe the day I met Zachary will likely be the most mindfully present day of my life.
Every year my family celebrates Zachary on October 14. We take the day off from work and pull our living kids (happily) out of school. It is a day we declare is just for family. We do an activity together and bake a cake. I blow the dust from Zachary’s memory box, which is mostly empty, and pull it down from the top shelf of my closet. We look at the photos my mom took of the delivery, and also the pictures from Now I Lay Me Down To Sleep. The kids always love hearing Zachary’s story as I flip through the scrap book I made of my positive pregnancy test and images of my growing belly. Then, at night, Aaron and I cuddle up under the covers of our bed and look at the photos again. That is when my anger at the helplessness to save my son bubbles out of me – as it does every year. We cry and fall asleep in each other’s arms.
“Healing yourself is connected with healing others.”
– Yoko Ono
This was the first year in the last seven years that I was away from my family for Zachary’s birthday. While Aaron and our living kids celebrated Zach at our home in Edmonton, Alberta, Canada, I was in Ottawa, Ontario, Canada. I gave the keynote speech at the Butterfly Run, which is a local celebration of children that have died. Hundreds of people were there. Many tears were shed. The next day I give a speech at the Baby Steps walk in Brooklyn, New York, USA. That was October 15; Pregnancy and Infant Loss Awareness Day.
It was hard being away from my family, but I also felt at peace knowing that I was there because of Zachary. He changed my life so profoundly and for that, for all the blessings I never would have known without his short life, I am immensely grateful.
I remember the day I left the hospital after saying goodbye to Zach. Aaron went to get the car and I stood waiting in the entryway of the hospital. I still looked pregnant. I had no baby. My face was pale from shock. My eyes were red from crying. I held a teddy bear in my arms, which the hospital had given me in my grief. I felt like everyone who passed me knew what had happened. The loneliness was thick. The months that followed showed me that the loss of a child is misunderstood in our culture and often provokes discomfort in those who have not experienced it.
Just like Zach’s birth and death, I never want to forget that loneliness. It is a reminder of why I do what I do. It reminds me why I sometimes need to be away from my family on important days, like Zachary’s birthday. I am passionate about helping other bereaved moms and dads feel less alone after their own heartbreaks because I believe, deep down in my heart, that we are stronger together.
Here are some other ways I like to give back:
- Celebrating Sweeties – this is a community page on my blog called Wanted Chosen Planned – Life After the Loss of a Child. Families can email me the name, birth and death date of their child, along with a photo if they have one. I add these children to the sweeties already in the group.
- I am giving away copies of my book, called Expecting Sunshine: A Journey of Grief, Healing and Pregnancy After Loss. The giveaway is taking place on Goodreads and you can enter here: (The giveaway runs the months of November and December 2017.)