Losing a Child: Always Andy's Mom

Choose Joy.

This is the motto that today's guests, Jen and David, decided that their family would follow after a prenatal ultrasound showed that their fourth son AJ would be born with not one, but two newborn abnormalities. He had achondroplasia as well as a rare congenital heart defect. They knew that AJ was facing a complex medical future, but they decided that they would face all these struggles with joy-filled hearts.

Throughout AJ's 44 days of life, Jen and David chose joy each day. David described AJ as a 'little man with a big purpose.' His life was a roller-coaster of ups and downs, but ultimately AJ's lungs were unable to heal and he lost his life. After AJ's death, you might think Jen and David would have given up their 'Choose Joy' motto, but this has not been the case. Jen knew that she needed to do something to help her broken family grieve and she needed guidance. Jen immediately signed up for several retreats at Luella's Lodge, some for her, some for her and David, and some for their whole family. The peace and comfort that Luella's Lodge offered was truly indescribable. Jen found herself being drawn back again and again.

This is the point in the story when Jen's path first crossed my own. Carrie, from Luella's Lodge, and I decided to do a special retreat this past fall for Always Andy's Mom podcast listeners. Although Jen had never heard of me or the podcast, she was the host mom for that retreat. Over the past five years of doing the podcast, I have felt God's presence many times, but I never felt it stronger than during that weekend. 

God knew I needed a video editing team to help with the podcast's social media presence. God also knew that Jen and David needed to expand their production company by working with organizations they felt passionate about. As our relationship began that weekend, we both felt that by choosing to work with each other, we were choosing joy. Together, we can help make podcast episodes and meaningful videos for grieving families everywhere. I envision AJ and Andy both grinning down at us from heaven, proud to see their parents choose joy.

*If you want to join me next fall at Luella's Lodge, go to luellaslodge.org and sign up for the September 25-28th retreat.

Since this week's livestream fell on Veteran's Day here in the US, it made Gwen and I think about ideas of sacrifice and honor. We set aside this day to honor veterans and the sacrifices that they made while fighting to defend this country. Military awards are often given as an honor for military heroism or outstanding service. Over a military career, a serviceperson might earn many such awards which can be displayed on military uniforms. 

Grieving people go through many sacrifices themselves after losing loved ones. We lose not only our child but often our sense of purpose and security. We lose our hopes and dreams for the future. We may feel that life is hardly worth living. We certainly don't feel we deserve to be honored with a medal. 

I honestly feel like some days I am just barely hanging on, but I was challenged by two different people this week. The first was my dear, sweet aunt Penny who has been like a mother to me since the death of my mom in college. After listening to last week's podcast with David Kessler, my aunt wrote, 'Marcy, what you have done on your grief journey fills my heart with love. I know you won't like me saying this, but you are my hero.' She was right, I didn't like hearing those words at all. I am not a hero. I can think of dozens of people who are heroes, but that certainly does not describe me. 

Then Gwen challenged me again in this episode. She asked grieving parents to submit names for awards they could earn in their own grief journeys. All of the answers were amazing, but some of my personal favorites were the Changed Heart Award, the Best Fake Smile Award, and the Got Out of Bed Award. She then asked me what my award would be. I was quick to think that I really didn't deserve an award, but then I thought of Aunt Penny and being her hero. 

If I am her hero, then maybe I do deserve an award. And if I can be a hero, then we can all be heroes. We may not have a special day or be able to wear a uniform covered with medals, but we can honor ourselves and each other because what we are doing is heroic, even if some days, we only earn the Got Out of Bed award.

When David Kessler's publicist asked if he could come on the podcast to promote his newest workbook, Finding Meaning: Grief Workbook: Tools for Releasing Pain and Remembering with Love, I felt honored. David Kessler is one of the world's foremost experts on grief and loss. He has written six best-selling books over the years, including two that he co-authored with Elisabeth Kubler-Ross. He founded the website grief.com, which boasts over 5 million yearly visits. 

Despite these accolades, I admire David most for his approach to life after becoming a bereaved dad. When David's younger son, David, died suddenly in 2016, he found that he could not prepare for such pain. David says that he wanted to call every grieving parent whom he had counseled to say he hadn't understood the depth of their pain.  David told grieving parents to start therapy and go to support groups, but he did not know just how difficult that was for a newly bereaved parent. David says that it took him three times to get the courage to attend his first grief support group. He sat in the group staring at a table with his books on it, no longer the grief expert, but instead a bereaved dad.

After the death of his son, David learned so much that he hadn't truly understood before. He learned that the pain of grief was incredibly deep, but if you took time to excavate through the pain, meanings could be revealed. With the blessing of the Kubler-Ross family in 2019, David wrote a new book, Finding Meaning: The Sixth Stage of Grief. Since the book was published, he realized that a personal workbook might be an even better way for people to find meaning in their lives. David says the workbook is a way to 'get the pain out of you and into the workbook.' It is a truly healing experience to complete the workbook.

I want to close today with what David said to me at the end of our interview. 'See the meaning you are making in the lives you are touching.' Every time you talk to another person, you are making meaning, whether you go on a podcast to share your story with thousands or sit at a kitchen table and share with one person.

'Is life still worth living?' 'Will I ever be happy again?

These are questions often asked by bereaved parents. They are asked quietly amongst other grieving parents or therapists. They are often left unsaid entirely but still plague us inside. We are afraid to voice them, afraid to think of what others might do or say - afraid that we will offend our living family members if they learn that these questions are in our heads.

Today's guest, Jae Hee, was having these very thoughts in the months after her 5-month-old daughter, Alina, died of a genetic disease, but no one, not even her family, knew. From the outside, Jae Hee looked happy. She was cracking jokes at work. She was laughing and interacting with others, but on the inside, her passion for life was gone. As the weeks passed, Jae Hee wondered if life was always going to feel this way. 

About two months after Alina died, Jae Hee started listening to the podcast and learned that she was not alone in her feelings. The podcast recommendation came from a friend of a friend whom Jae Hee later learned was a bereaved sister who started listening to better understand her parents' grief. As Jae Hee thought of her older daughter, she decided to sit down with this woman to talk with her.

This new friend said to Jae Hee the same thing that a nurse told Eric soon after Andy's death. She said that after her sibling died, she never felt like she was enough for her parents. She said they were never truly there for her after the death of her brother. Their happiness was gone. This woman still loves her parents deeply, but she always wished that they could have a love for life again.

This conversation profoundly hit Jae Hee. She didn't want her older daughter to live her life longing to see her parents happy. She wanted to truly be happy again. She thought of Alina and her short life - a life so much shorter than Jae Hee wanted it to be, but every second of it was filled with love. Jae Hee and her remaining family deserve all of that love and joy as well. 

Is life still worth living? Yes, it is. Will I ever be happy again? Yes, Jae Hee and I can be, and so can you.

Today's guest, Elizabeth, lived through a nightmare after moving her oldest son, Henry, into college. Elizabeth never imagined that on his first day of class, only days after leaving a smiling Henry in his dorm room, he would be killed in a freak accident on campus. Elizabeth's safe world was completely shattered. She learned that accidents happen on college campuses and that Henry was not the only US college student who would never come home again. 

One year later, Elizabeth was understandably worried when Henry's younger brother got ready to move across the country to start college. As much as her rational self knew that it was not likely that they would suffer another tragic death, the fear could not be shaken. Elizabeth and her husband did what other people thought was completely crazy. They moved across the country to Washington DC to be near their younger son as he started college. Elizabeth knew that simply living nearby would not offer more protection against a tragic accident, but it gave her comfort to know that her still grieving son was just a short drive away if he needed anything. 

When Andy died, our foster son, Valeriano, had just finished high school. His case worker had been helping him look for apartments to move out. After Andy died, the worker continued to look for housing for Valeriano, but we could tell that Valeriano's heart was no longer in it. He had been forced to leave his biological family in Guatemala and now, his safe, happy family in the US was being torn apart as well.

I remember telling that case worker to stop. Valeriano was a part of our family and needed to stay in our home. I am sure that Elizabeth had people telling her to let her son move alone, but she knew what her grieving family needed. They needed to be close together. Even though her son rarely had to visit his parents, it was comforting to know that he could. 

I am so proud that Elizabeth was brave enough to make this decision for herself and her family. She didn't think about what society expected her to do; she did what they needed. What an amazing example for us all.

To learn more, read her Huffington Post article here or follow her blog on her substack, Channeling Grief.

After Chana lost her oldest son Ryan to a drug overdose five years ago, she was understandably devastated. Still, bit by bit over time, she started to feel like her family may be on its way to recovery. Her second oldest son, Chris, had been crushed when he lost his older brother and best friend. He struggled with relationships and work after losing Ryan. Chris even moved back home to get more support from his family. Then, 395 days after losing Ryan and just as things seemed to be improving, Chris suddenly died as well.

As bad as Chana thought life could get, it was now worse. Two of her four children were dead. Chana said, "I didn't think I was ever going to be able to get out of bed and open my eyes without crying." There was a huge hole in her heart and there were times that Chana thought about ending her own life - but she didn't. She kept getting up each morning and functioning despite having tears in her eyes each morning. 

Over time, however, the tears weren't on her pillow every day. The grief did not feel quite as heavy. There were times when she began to laugh and smile again. Chana remembers when she first started to laugh again, she used to want to punish herself thinking that she did not deserve to smile, Chana shares that after a long time and a lot of tears, she realized that she does deserve to smile. She deserves to have moments of happiness again.

As you listen today, you will hear me talk about Chana's smile. You will hear me say that every single time Chana brings up Chris's name, her face begins to light up with a smile. That should bring all of us so much hope for the future. Early in my grief, every time I said Andy's name, tears would well up in my eyes and my lips would quiver slightly. ever so slowly, that has changed for me as well. Often when talking about my dear, sweet Andy, a big smile will come across my face. In fact, as I write this, I find myself smiling and thinking of Andy's smile as well. That is my hope for all of you today that smiles may begin to poke through your tears.

In the last minutes of this week's interview, today's guest, Ellie, wanted to share one last thing with listeners as she looked back on her 25-year journey of grief after losing her two young children. She compared grief to the ocean. She said that sometimes, the ocean is clear and calm and beautiful while at other times storms come and it feels tumultuous. I find this an incredibly fitting comparison as I sit here writing this while a catastrophic hurricane, Hurricane Milton, is landing in Florida.

At this time yesterday, the ocean likely looked beautiful and inviting along Florida's beaches while today it is destroying property and lives. That is the same feeling that we get in our grief. Sometimes, life seems relatively calm, but at other times, our grief feels like it has shredded us completely. We think we will never be able to recover. We feel like the devastation is complete and that there is no hope.

Twenty-five years ago, Ellie lost her two young children, Alex and Adri, in an explosion and fire. Ellie says that in some ways, this 25th year has been the worst, not because life is harder for her now than it was all those years ago, but because she had expectations that she would feel 'better' by now. When Ellie and her husband lost their only two children, I imagine that the grief felt like Hurricane Milton. It was huge and overpowering, and it felt like their entire world had been destroyed and no good could ever enter their lives again.

We know, however, that hurricanes don't last forever. In mere days, Hurricane Milton will leave Florida, but as the ocean calms, damage will still be evident. If you look closely, scars will be evident for years, possibly even decades. This, too is the case for Ellie. From the outside, her family looks complete with her husband and four children. Many people do not know that there should be six and that the two oldest are forever missing. Ellie still notices the scars and feels the daily pain of her missing children. Some days, the grief feels like soft lapping waves on the beach, but at other times, she can still feel the hurricane force winds.

After the death of your child, everything becomes more challenging. Previously easy tasks like going to the grocery store suddenly seem almost impossible. Getting out of bed and showering in the morning no longer feels automatic. You may wonder how you will be able to get through the next weeks, months, and years without your child.

In today's podcast, Gwen and I sit down to talk about ways to try to find a little purpose to get out of bed and live each day. Having other family members to love and support can give us motivation to keep living, but sometimes that is not quite enough. Sometimes finding activities that give us a little peace or comfort can help us as well. Other times, it may be an activity that simply occupies our minds for a bit so we can take a little break from the overwhelming weight of grief.

When I think about what has gotten me through these past six years, so many things come to mind. First and foremost are other people who have given me amazing support. Certainly for me, talking to other bereaved parents, whether through the podcast or in support groups has been life-changing. The idea of helping and accepting help from other grieving parents has helped bring a little bit of purpose back to my life and on those tough days, it is these other parents who are best at offering me comfort.

However, there are times when I have to escape from the grief for a few minutes or a few hours. At those times, sitting out on my deck listening to the birds sing or playing a round of golf can help take some of the stress away. Sometimes, things that brought comfort years ago can do so again. I used to love reading fiction books as a kid but found myself too busy to do so as an adult. For the past couple of years, I have found that reading allows me to escape and put myself in a different world where the pain does not feel so sharp.

Overall, everyone has different support systems and actions that bring them peace. I hope that this episode helps motivate all of you to find the people or activities that can help bring you a sense of comfort and put a little purpose back into your lives.

Today's guest, Marj, always wanted her daughter, Chloe, to be a normal kid. When Marj and her husband first adopted Chloe, she already had medical concerns, but at 20 months of age, their lives were turned upside down when Chloe was diagnosed with cancer. Chloe lived the next 14 years of her life with cancer, but Marj continued to try to make her life as normal as possible.

When Chloe's parents sent her to summer camp for kids with cancer (now called Campfire Circle), Marj and Chloe took a flight to where Chloe would be able to get on a bus for camp. As a kid, Marj had loved going to summer camp and she new that Chloe would love the experience as well - if they could get her to go. The night before she was to get on the bus, Chloe called her dad and said, 'I don't think Mommy loves me anymore. I think she is trying to get rid of me. She's sending me to this camp and I don't want to go, Daddy.' She was almost frantic with worry, but somehow, Marj convinced her to get on the bus that morning.

When Marj came to pick her up two weeks later, Chloe's expression was one of pure joy. She shared that camp had 'changed her life.' At camp, she was a regular kid. She didn't have to explain herself to anyone. At camp, being in a wheelchair or needing an oxygen tank didn't make a kid feel like an outsider. These things were completely normal. If Chloe didn't feel like eating, she didn't have to eat. When other kids were swimming and Chloe felt like she wanted to stay in the boat and take pictures, she stayed in the boat and took pictures.

After those first 2 weeks at camp, Chloe went each year until the camp had to be closed for COVID. Marj says that those weeks were magical for Chloe. Since Chloe's death, Marj has struggled to find purpose in her life again. Finding a reason to get out of bed can be a challenge. Marj wondered what it would be like to visit Chloe's magical camp so she went to volunteer. Marj said that she felt Chloe at the camp and could see why she loved it so much. Marj hopes that moving forward, it can be a place for her to go to feel Chloe’s presence and a bit of camp magic each summer as well.

Losing a child affects us in ways that we never possibly could have imagined. We are quite honestly not the same people who we were before experiencing this profound loss. When today's guest, Lisa, lost her 19-year-old amazing, talented daughter, Kate, to a rare, aggressive cancer a few months ago, she truly felt lost. She said that she lost confidence in herself. She felt like she couldn't do anything even to the point that she started feeling like a bad cook and a bad driver.

The guilt and all of the 'what ifs' became consuming for Lisa. She found herself focusing on many past decisions. What if they had taken her daughter's ovary the first time when she had a simple benign cyst? What if they had gone to a different doctor? What if they had done surgeries at different times? Would her daughter still be alive today?

These 'what if' questions haunt so many of us, don't they? They plagued me throughout my grief just as they affect Lisa today. How do we learn to let go of those doubts and questions? There are no easy answers. Others tell us again and again that we did the best we could do and that there is nothing we could have done differently, but learning to accept and believe in ourselves is much more difficult.

I learned from Gwen many years ago that feelings don't have to be rational to be real. And these feelings, as irrational as they may be, are important to acknowledge. Only by experiencing all of our emotions can we truly begin to heal. We need to slowly and gently go through our irrational feelings and challenge them ourselves. Therapists and support groups can help us along our journey as well.

Through hard work and perseverance grieving parents can and do heal. I have seen it in myself and so many others through these past six years. I can tell a funny story about Andy now without overflowing tears. The grief is still there, certainly, but it is no longer all-consuming and I experience more moments of peace. I know, too, that someday when Lisa thinks about Kate, the first thing that will come to her mind will be her amazing smile and personality and not the doubts that flood her mind today.