Losing a Child: Always Andy's Mom

Grief needs tending. That is one of the truest things Gwen said in this conversation, and it is also one of the hardest things about being a grieving parent. Because your children need tending too. And you cannot always do both at once. This episode is the audio version of our most recent livestream, and it is one of the most honest conversations Gwen and I have had. We asked our community how losing a child has changed their parenting, both positively and negatively, and the responses poured in. What emerged was a portrait of parents doing the impossible, every single day, and feeling like they are failing at it. The fear that arrived with grief and never quite left. The panic when a text goes unanswered for too long, when a phone rings at an odd hour, when a child does not come home when they said they would. One listener described it beautifully: her nerves were on the outside of her body. She knew, in a way she never did before, that if one child could die, anyone could. The critical thinking that used to come easily had been replaced by something rawer and more urgent. The short temper that lives alongside the patience. So many of our listeners named the same contradiction: they no longer sweat the small stuff, and yet they are more short-tempered than they ever were before. Grief stews in us. It sits just under the surface, and sometimes it spills out sideways, onto the people closest to us, the ones we love the most. The guilt of not being the parent you used to be. One listener said simply: before my son died, I knew I was a good mom. Afterwards, I doubted myself for several years. That doubt is real. That doubt is common. And it is not the whole truth. Because here is what Gwen reminded us near the end of this conversation, and what I want every grieving parent who listens to carry with them. Your children are watching you get up every day knowing the day has sadness in it. They are watching you make the lunches and get them dressed and take them to their places. They are watching you love them in the middle of the hardest thing you have ever been through. And that is not nothing. That is extraordinary. You are doing a great job. Even when it does not feel like it. Especially then.

Her name is Magnolia Song. Her father had always loved the name Maggie. Her mother Erin, a botanist, found the perfect origin for it, the magnolia tree, the oldest flowering species on earth, known for resilience and beauty. It felt exactly right for the little girl who arrived as the best surprise of their lives. And what a girl she was. Maggie loved water in every form, puddles, bath time, the surf at the beach. She was mesmerized by the redwood trees that swayed above her backyard. She had dark curly hair and a smile that could pull the biggest belly laughs out of her oldest brother like nobody else could. She played a delightful game of slowly moving a Lego toward her mouth while watching her mama out of the corner of her eye, just to see the reaction. And the week before she died, at just 15 months old, she walked herself an entire mile through the snow at Lake Tahoe - just a small, determined person moving through the world entirely on her own terms. Maggie was 15 months old when she died suddenly and unexpectedly on February 21st of this year. She had been perfectly healthy. She was smiling over her shoulder at Erin at 3:30 in the afternoon. By 1:00 in the morning she was gone, from an intestinal volvulus that twisted so quickly and so tightly that even the doctor who fought to save her looked Erin in the eyes three months later and said, I can say with 100% certainty that we did everything possible. There was no way to save her. On the evening of that first terrible day, the family gathered on the front porch, and a great horned owl landed on the telephone wire right in front of them. A bird Erin had never seen at that house before. It sat there for ten, fifteen minutes, hooing, looking right at them. They called the boys out. They all just listened. Erin has not seen that owl again. She is not sure what she believes about signs. She is a scientist by nature, and grief has cracked open questions in her she never expected to be asking. But she has come to a quiet conclusion about it: whether or not signs are real does not actually matter. If it comforts you, it is enough. That spirit of open, honest questioning is at the heart of everything Erin shares in this conversation. Six months into the most devastating loss of her life, she is not pretending to have answers. But she has made choices. She decided very early that she was going to lean in. She was not going to push Maggie aside. She was not going to avoid the grief or dress it up or rush through it. She drew a distinction that has helped her enormously, between grief, which is natural and healthy and necessary, and suffering, which lives in the guilt and the unanswerable whys. She could not choose whether Maggie lived. But she could choose how she was going to grieve. And she holds onto something she heard on this podcast in those first desperate weeks of searching for guidance. It is the love that connects. Not the grief. Maggie is still woven into the fabric of their daily life. The magnolia trees Erin planted in March are blooming. The boys still make her laugh. And the love is still the thread.

When Ben was in treatment, he had a signature move. He would flip on some music, put on his headphones, and check out. Not in a sad way. In the way of a boy who had discovered, long before anyone taught him the term music therapy, that sound could carry him somewhere the chemo could not reach. He was five years old when he was diagnosed with neuroblastoma. He was eight when he died. And in between, he wore a Michael Jackson curly wig and a sparkly glove to the grocery store, demanded Olive Garden in Times Square after immunotherapy, and once stood up on a procedure table before a bone marrow biopsy and told his doctor, show me all your supplies first. He was never defined by his illness. He was just doing cancer, as his mother Wendy puts it. Because that was what was there. The rest of the time, he was dancing through the city. When the news ran their memorial piece after Ben died, they described him as having lost his battle with cancer. Wendy wanted to scream. He didn't lose anything. He got dealt a crappy hand in this life. And then he inspired a community, countless people, people she will never meet. How do you call that losing? In the years since, Wendy has channeled everything she learned in those three and a half years of treatment into the Benjamin Goldberg Foundation, which advocates for what she calls the healing arts in healthcare. At Sloan Kettering, a dance therapist had walked into Ben's treatment room one day and changed everything. His blood pressure dropped. He needed less medication than the other kids. The nurses came in and danced. And Wendy thought, I want to bring this home. She did. Today, every child who walks into their local children's hospital in Virginia has access to music therapy, art therapy, dance therapy, yoga, and Reiki, because of Ben. Because of one little boy with headphones and a heart full of music. The foundation has since expanded into social prescribing, partnering with a regional health system to explore the formal prescription of music and art to reduce anxiety, depression, and hospital visits. And Wendy has written it all down in her book, Mom's Book: It Was Never About the Grief, just published last month, because that is the whole truth of it. It was never about the grief. It was about Ben. And Ben is still in every room. You can find Mom's Book wherever books are sold. Learn more about the Benjamin Goldberg Foundation and the BGF Podcast at benjamingoldbergfoundation.org.

Celeste had a perfect pregnancy. She felt great. She stayed active all the way to term. Every appointment, every ultrasound, every check was textbook. The nursery was painted pink, because Hannes had opened the can by himself two days after their appointment, on camera, finding out the gender before Celeste so he could have something special just for him. The bassinet was next to the bed. The car seat was in the car. The postpartum cart was stocked with diapers and snacks. Ellory was 40 weeks and one day old when Celeste woke up feeling a little crampy and tired. She decided to rest, and fell asleep with her hands on her belly, feeling Ellory kick. And then something shifted. Just a feeling. Something telling her she needed to get Ellory to move. She ate spoonfuls of Nutella. She tried different positions. She called Hannes and said, something's wrong. It had only been two hours since she had last felt her move when she arrived at the ER. A nurse put a monitor on her belly and couldn't find the heartbeat, and Celeste already knew. There was no heartbeat. Ellory had grown to 7 pounds and 3 ounces. A big, healthy, beautiful baby girl who made it all the way to the finish line. She just couldn't cross it. In the weeks and months after losing her, Celeste used her medical background to research. She was not going to accept unexplained as an answer. She found a Yale researcher named Dr. Kleiman who studies stillbirth and small placentas. She looked back at Ellory's placental pathology report and discovered the placenta was in the .02 percentile. Ellory's placenta was simply too small to sustain her life. No one had measured it. It is not standard of care to measure a placenta during prenatal ultrasounds — even though the capability is built into the machines, even though the measurement takes 30 seconds and 3 numbers, even though a small placenta is the most common cause of stillbirth, and even though 50% of term stillbirths are preventable. Out of that discovery came the Racing Awareness for Ellory campaign. Hannes is running 12 marathons in 12 months, in cities across the country and beyond. At each race, he carries a pair of Ellory's shoes. And right before the finish line, he drops them. Because she got all the way there. She just couldn't cross. At a race in Asheville, a stranger who had read their flyer approached Hannes after the finish and asked, are you Ellory's dad? Hannes had to have him repeat it. He had never been called that by a stranger before. He said yes. Yeah, I am. That is everything, right there. To learn more about Celeste and Hannes's campaign and the work of the nonprofit Measure the Placenta, visit measuretheplacenta.org. You can find their podcast, The Leisure Room, and follow their journey on social media at The Kiddos Diaries.

Danielle was standing in a NICU holding her newborn daughter Hope when a stranger approached her asking, "Are you Angelina's Mom?" Danielle's quiet response was, "I used to be." The woman was a pediatric oncologist from a hospital in Westchester. She had never met Angelina. But she knew exactly who she was. Parents of sick children had been bringing in pictures. Angelina ziplining. Angelina indoor skydiving. Angelina feeding dolphins. Angelina snorkeling with sharks. What do I need to do, they kept asking their doctors, so my child can live like Angelina? And when Angelina died, grief counselors had to be brought in for those parents, because if there was no hope for a kid like her, what hope was there for any of them? Those parents decided their children wouldn't just survive. They would thrive. Like Angelina. And then the doctor said something Danielle has never forgotten. There will be thousands of children who are sick, who will live and be inspired to live, and to live well, who will never know her name. Angelina was diagnosed with stage 4 neuroblastoma at three and a half years old. The tumor ran from her adrenal gland down into her pelvis, climbed her lymph channel up her stomach, wrapped itself around her aorta, and spread to her bones. On a scale of zero to fifteen, she scored a fourteen. She was given a twenty percent chance of survival. She fought for seven and a half years. And the whole time, she lived. She indoor skydived. She ziplined across Las Vegas Boulevard. She snorkeled with exotic fish, swam with sharks, and ziplined down a volcano in Hawaii. She wanted to bungee jump into the Grand Canyon. She served her mother a legal cease-and-desist letter, drafted by a friend's attorney parent, claiming trademark rights over her own facial expressions and catchphrases. She had big plans, better ideas, and absolutely no interest in being told what she could not do. The clinical trial Angelina participated in changed its criteria because of how she responded. Future treatments for BRCA2-positive neuroblastomas are being developed from her genome sequencing. Sick children across the country were inspired to fight because their parents carried her pictures into hospitals. A grandmother's quiet words to fight traveled to Danielle, who carried them to Angelina, who carried them to children she never knew existed. The lessons keep traveling. The love keeps traveling. And most of them will never know her name. Danielle's podcast, They Were Here: Lessons from Their Lives, is her answer to that truth. You can find it wherever you listen to podcasts.