Sometimes babies just die. No warning. No answers.
Six days after bringing my newborn twins home, my curious, bright, beautiful, perfect, healthy and cuddly daughter Eva never woke from her nap. She was sleeping in textbook safe sleep conditions.
I did CPR on my sweet baby girl on the kitchen counter, and did my best to clear her airway of the blood that pooled after her lungs stopped working. The paramedics worked on her for seventeen minutes while I held my son and my husband and I desperately prayed in the hall. Forty-five minutes later, Eva’s heartbeat was brought back at the hospital by a team of two dozen doctors and nurses. She was on life support for twelve days while we gave her a chance to come back, and then made the impossible and deeply loving choice to let her go. She passed in my arms and I held her until she turned cold and white. I held her as long as I could. Finally, I let an angel of a human named Rachel carry my daughter away forever.
Grief is never what you expect. I had a whole vision of how I hoped to survive this quite dangerously nearly unsurvivable pain. I was brave and present and communicated my needs to family and friends. I instructed my husband to never leave me alone because I was in danger of harming myself or attempting to take my life. I spoke my needs to many. I was not heard. I was, far too often, ignored.
I am still here. I survive. I protected my son from unimaginably dangerous forces and environments. I protected myself. But I did not get the support I deserved. And that cruel injustice should never have happened. Nor should it happen to others.
There were a handful of people who showed up for me as much as they could, but they were standing in for a whole community. I’m grateful for them, but I needed more help.
There were a handful of people who showed up for me as much as they could, but they were standing in for a whole community. I’m grateful for them, but I needed more help.
In the wake of the news that someone you know has lost a child, hand this list to the people who will be caring for them. They deserve support. They deserve the space to honor their child by focusing on their grief with their community holding them up.
Here’s what I wish had happened; what I deserved but did not get:
1. Sleep is critical to survive the initial howl of grief. I needed time to sleep while someone else looked after my surviving twin, waking up for overnight feeds and letting me nap during the day. I needed to be more present with my son to survive that moment – instead, I was deliriously exhausted.
- Information about my rights as a parent. I deeply wish I’d been more informed. I would never have left her body. I didn’t know I could have accompanied her body through the entire process. I could have walked her down the hall to where bodies were kept in the hospital. I could have taken her home immediately in a casket to sit with at home for a day and night and perform ritual and cry and say goodbye. I could have driven with her body to the cremation place and pushed the button myself. I have so many regrets.
3. Someone to stay in the house with me so I was never left alone.
4. An excellent grief counselor who could come to my house so I didn’t have to go anywhere. And, when the time was right, help with finding other resources and support groups. That task was so overwhelming that I never managed to get to one.
5. Assistance with bills like fundraising, and navigation of our half a million dollars of medical bills and rejected insurance claims. On that note, Medicare for all, because grieving parents shouldn’t be burdened with overwhelming debt and the excruciating math needed to figure out how long they can afford to keep their child alive. Friends donated thousands but we are drowning in debt.
6. Help planning the arrangements. Nine months in, I still haven’t had a memorial for my daughter. It makes me hate myself but I’m doing too much on my own already.
7. Food and cleaning taken care of. A meal train. Someone to wash my breast pump.
8. Help and companionship while caring for everything that belonged to Eva for safekeeping, even her dirty laundry. I will never smell her again because someone tried to be helpful and washed her clothes.
9. Someone to grieve with at any hour of the day. Ideally someone who could have stayed with me overnight, when I’d go into a dark place. I wish someone had been staying with me to listen, hug me, hold my hand and watch movies with me. I was very alone, and grief is meant to be shared.
10. Time away from responsibilities like work and other obligations.
11. Emotionally available friends and family who held space for my grief. The one person I needed more than anyone immediately became alternately absent or took their anger out on myself and my surviving son. At times, we were not safe. It was the last thing I needed after losing my daughter. Toxic masculinity became an abusive presence, interrupting and strangling my grief process and time with my son. This common dangerous dynamic is often a taboo topic within grieving families, and it must be discussed and held accountable for its damage, especially to grieving mothers. I have been working towards stability and safety and soon, that nightmare will be behind me. Others simply disappeared or became toxic. New friends came into my life and I am blessed by their compassion. However, I grieve the loss of those who I thought I could depend on.***12. Someone to hold me when I felt like I was dying and wanted to jump off the balcony. It’s a miracle I’m still here after feeling so alone.***
I will never get that time back to grieve Eva and savor my time with my baby boy. It didn’t have to be that way. It could have been a little easier and more humane.
Some parents don’t survive this profound and potentially dangerous grief because they had to deal with it mostly alone like I did. Not everyone is able to make it this far without enough support. This experience is hard enough. Please learn from mine and do better. To honor the grieving mothers, and to honor Eva.
*** EDITOR’S NOTE: If you ever feel you are in danger of domestic abuse or a danger to yourself, please contact the National Domestic Violence Hotline or text HOME to Crisis Text Line at 741741.
Evin Phoenix is a writer in Denver. She’s the loving mama of twins Javi and Eva, who waits for mama in heaven. Recent work includes poetry in A Walk With Nature: Poetic Encounters that Nourish the Soul, and an article in the journal Psychological Perspectives. She’s working on a novel about going to the afterlife to bring back her daughter.
