Losing a Child: Always Andy's Mom

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.

Heather has always loved out loud. She has always talked about her boys to anyone who will listen, shown pictures to strangers, shared memories on social media without a second thought. It never dawned on her not to. And when she lost her youngest son Owen, whom everyone called O, it never dawned on her to stop. O was funny, mischievous, and big-hearted in equal measure. The kind of boy who once spent $40 of his own money on meat sticks at thirteen years old just to hand them out to classmates and leave one on his teacher's desk because she was having a bad day. The kind of boy who left notes on his desk at home that said, you mean my heart to me. So when she lost him, she did not go quiet. She started collecting "O signs" almost immediately, writing every one of them down in a notebook because she was so afraid of missing a single one. She built the chaos garden she and O had planned together, grew hundreds of flowers, preserved every bloom, and turned them into art that now goes out into the world carrying a little bit of his love in each piece. She created a journal for others to record their own signs from the loved ones they have lost. She organized a second line, a Louisiana-style brass band parade through the streets of her town, on what would have been O's first birthday after his death, inviting everyone who had lost someone to suicide to come celebrate how their person lived, not how they died. She carries O's photo everywhere her family travels, because she promised him they would see the world together, and she intends to keep that promise. None of it was planned. None of it was strategic. It was just love, looking for somewhere to go, and finding it. Near the end of our conversation, Heather shares a poem she found on one of her hardest days, written by Sharon Marsh. She reads it at the second line every year. I think it is the most beautiful summary of everything she has done since losing O. I'll live for you. Your life was cut short, but there is still so much living for you to do. I will live for you. I will take you with me everywhere I go. Drink coffee in dimly lit cafes, travel to foreign places, put my toes in the sand, create memories. So that whenever I see you again, I can tell you all about it. And she will. She already is. At the end of this conversation, she shares one more story. A man she met in Antigua, who never knew O, sent her a message months later to say his daughter had been born. And then he said, "Don't worry, Heather. I'm going to teach her to love like O." A stranger who never met O. Teaching his newborn daughter to love like him. That is what grieving out loud does. It lets the people who loved your child keep loving them. And it lets the people who never knew them love them too.

Kayla called her God's baby from the very beginning. She had been through six or seven miscarriages before Ellie arrived, and from the moment Ellie was born eight weeks early with a heart condition so severe the doctors were not sure she would make it, Kayla understood something in her bones: this child may not be hers to keep. She was only hers to love. And love her she did. For 574 days in the hospital. Through intestinal surgery and open-heart surgery and ECMO twice and sepsis and a tracheostomy and every obstacle that life and medicine could throw at a tiny, premature little girl who had no idea she was supposed to be defeated. That is the thing about Ellie. She did not get the memo. She gave wicked side-eyes to the nurses who dared take her temperature. She pretended to be asleep when the physical therapist walked in, then opened her eyes the moment she left. She played with her balloon with her oxygen saturation in the thirties. She said mama for the first and only time right before her tracheostomy, as if she knew exactly what her mama needed to hear. When her surgeon came in with the clamp trial running and the whole room holding its breath, Ellie was kicking. She was always kicking. And in her final months at home, through all of it, she was happy. Kayla says near the end of this conversation something that I have not been able to stop thinking about. She says she has joy and she has grief, and one is her right foot and one is her left foot, and you cannot walk without both. She will walk like that for the rest of her life. And I think that is Ellie's greatest gift to her mama. Not just the side-eye and the balloons and the rattle toy and the one perfect "mama" - but the living proof that joy and suffering are not opposites. That a person can be in both at the same time, fully and completely, and still choose joy. Ellie did it every single day of her life, with her oxygen in the thirties and her chest full of tubes and the whole medical world bracing for the worst. Now, her mama, Kayla, tries to follow in her daughter's footsteps as she navigates this new life without her. Kayla also says this: there is an Ellie-shaped hole in her heart, and she will die with it. Not as a wound, but as a shape. The exact outline of a little girl who proved that even in the hardest, most impossible life, joy finds a way through. Not because Ellie's life was too small. But because it was so very full.