Losing a Child: Always Andy's Mom

Before our children are even born, we have dreams for them. We think of what they will be like as babies and the personalities they will develop as they grow. These dreams only get more real after they are born. Clara's dad, Joe, says that as he sang to Clara as a baby, he imagined what it would be like to dance with her as a little girl and even watch her get ready for her prom. It is truly one of the joys of parenthood - imagining a blissful, happy future. 

When today's guests, Jenna and Joe, went to Jenna's 28-week ultrasound, however, they got their first 'kick in the gut' that the blissful future they were imagining might not be possible. Baby Clara was suffering from SVT (supra ventricular tachycardia), and Jenna needed to be hospitalized immediately. They tried numerous medications, but little Clara entered into the world as a premature infant. Clara had numerous complications in her first 5 1/2 months of life, but eventually, they were able to bring her home, although still with a central line for her IV nutrition.

Despite all of these hurdles, Jenna describes this time at home as 'amazing.' They started to dream again, hoping that Clara would be able to lead a relatively full life. That all changed 5 1/2 months later (10 1/2 weeks before this interview was recorded when after a relatively routine medical procedure, Clara suddenly died on Mother's Day - Jenna's first Mother's Day. Jenna had looked forward to this day for weeks, telling all her friends how happy she was that she wouldn't be in the hospital as had been the case the year before when she was still pregnant with Clara, but the day had turned into a nightmare.

Their vibrant, happy amazing little girl was suddenly gone, and with her, all of the new little family's dreams went with her. Now, Jenna and Joe are slowly trying to put together the pieces of their life once again. They are moving to be closer to family and trying to find grief support in any way they can. Now their biggest dream for their little smiling Clara is to make sure that they are not the only ones who remember her and let others know that Clara is still a part of their lives.

I cannot quite believe I have been doing the Always Andy's Mom podcast for 5 years.  As of today, there have been well over 250,000 downloads in 128 countries as we share stories from around the world. This week, we went back to talk to guests who have been with us from the beginning and others who joined us along the way.

Accompanying Gwen and I for this episode are Stephanie (Ep. 3: Keyan's Mom), Chrisy (Ep. 19: Caleb's Mom), Nan (Ep. 23: Connor's Mom), and Demetra (Ep. 92: Eleni's Mom). If you have not heard these moms before or want to remind yourself of their stories, click on the links, but even if you are new to the podcast and have never listened before, you will find so much hope and healing by listening.

Each of these amazing moms talks about how they struggled when they were first recorded. In Chrisy's case, she was only 148 days into her grief journey so it is understandable that she would be in the depths of her pain. On the other hand, Nan lost her Connor 11 years before recording her episode. At the time, I found myself longing to have her strength. Little did I know, however, that inwardly, Nan was struggling and only one month later, found herself hitting rock bottom at the lowest point in her grief.

As I listened to each woman share years after I first met them, I saw so much growth. I found myself smiling as Stephanie found purpose again by dedicating her life to helping bereaved people through Starlight Ministries. As I smiled, however, tears also came as they so often do. Grief is hard. Grief is messy. Growth can come as months and years go by, but it is not a linear path. It is a path filled with many dark valleys and helping each other through the dark times is key.

As I think back over these past 5 years, I feel so incredibly blessed that God has allowed me to meet hundreds of bereaved people from varied backgrounds from all over the world. I have become a part of their grief journey and they have become a part of mine. I cannot wait to see who will enter my life over the next 5 years. Thank you all.

*To sign up for the next Starlight virtual support groups that I lead starting September 10th, email [email protected]. Visit starlightmin.org for more information

If you listened to last week's podcast, you heard a little bit about what goes on behind the scenes. For example, each week, one to two days before release, I listen to that week's full podcast and try to find an overriding theme I want to focus on for the write-up. This week was no different. but as I listened, I found myself hearing different themes.

The first idea was to focus on Remi’s amazing personality and how she impacted those around her - even those who knew her only in the hospital. The second theme revolved around the idea that Remi's mom, Courtney, felt like Remi's death affected her confidence in her ability to parent and her outlook on life in general. As I found myself debating the pros and cons of each of these ideas, it hit me - these ideas come from the same place. They all stem from how different experiences cause us to change and evolve as people.

When the ICU team cared for Remi in the hospital for 37 days after her drowning, they grew to love Remi and were forever changed. They never got to hear her speak or see her run and play, but they were impacted nonetheless, As Courtney held her young daughter as she died, she turned to the doctor who sat rubbing her back and told the doctor that she didn't have to be there with them. The doctor responded, 'I'm exactly where I need to be.'

The experience of losing Remi affected Courtney deeply as well. In many ways, these changes are negative, but there are a few positive ones as well. Before Remi died, Courtney felt confident in her decisions as a parent. She knew that she was a good mom who cared for her children well. Losing Remi changed all of this. Doubts came constantly. Is she a good mom? Can she keep her children safe? Those on the outside still see the great, amazing mom Courtney has always been, but inwardly, she feels that she is lacking. As much as these doubts haunt Courtney, however, she does value life in a way she could not before. Courtney says, ‘We are not promised tomorrow so we should love hard today.' 

So to all of you today, the message to you is this - love hard and offer care and support to all who are hurting.

This week is one that I have been dreading for a while now. Every year, as the calendar turns to August, I feel my dread and anxiety go up and with that an increase in headaches and other physical symptoms as August 15th comes closer. Last year was especially bad as it was the 5 year anniversary of Andy's death. I thought this year would be better until I learned that we would have to drop our youngest son Peter off at college on August 13th.

I know that most mothers have feelings of worry and sadness when their youngest child moves out of the house. For me, the feelings of worry exploded to a whole new level. I fear that as I drop him off at college, some tragic accident will occur and I will never see him again. I know that this is irrational and that most college students do not die when they go to college, but over the years, I have met many mothers whose children have died and that makes it more real.

In two weeks, the podcast celebrates its 5th birthday. Five years of telling amazing stories of amazing children, but they are also hard stories. They are emotional stories of tragic accidents and prolonged illnesses. Tears often flow as we relive those final minutes or days of our child's life or the moment we heard that the unimaginable has happened. As hard as these stories are, however, they are also stories of hope and resilience. They are stories of parents who continue to get up every day after horrific tragedy. They are stories that bind us together as a community of grieving parents.

As I look back on these past 5 years, I am proud of the stories we have helped tell and proud of the community we have created. As difficult as this week is for me and as real as my fears are, I know that so many of you are just a text or an email away. Six years ago, I felt very alone in my grief. I had my family and close friends, but when I looked into the world, I saw only happy, whole families. Today, as I wake up on August 15th, I feel quite different. Although I know far more stories of tragedy, I feel the strength and support of broken parents from around the globe. I know that with your help, I will get through.

"I don't know how you do it."

I have heard this phrase on and off in my life, but that was nothing compared to how often I have heard those words since Andy died. I know people mean well when they say, "I don't know how you do it," but I never really know how to respond. I don't feel any stronger or more resilient than anyone else. Quite the opposite is the case actually. I often feel weak and alone.

Today's guest, Jessica, heard "I don't know how you do it" for many years as well. It started shortly after her 5-year-old daughter, Dalia, was diagnosed with MERRF syndrome, a degenerative mitochondrial disease. Over the years as other parents watched their children gain milestones, Jessica and her family watched Dalia lose hers - first, her ability to walk and speak and then the ability to eat on her own. Eventually, Dalia even lost her sweet smile.

At the time of Dalia's death, her bedroom looked more like an ICU room than the bedroom of a teenage girl, but until Dalia died, Jessica didn't notice any of that. She just focused on being a loving mom to her sweet daughter. 'I don't know how you do it?' Really? It was just normal life for her. There was nothing heroic or extraordinary happening. Jessica just did what she had to do, living every day with her family hoping to give them all the best life possible.

Jessica at some point decided to write a book about her experiences raising and losing Dalia while also suffering through the deaths of both of her parents and sisters. The result of this effort was 'Breath Taking: A Memoir of Family, Dreams, and Broken Genes' available here on Amazon. She also began to think about the phrase 'I don't know how you do it' more deeply. How does anyone 'do it' actually? Jessica decided to start her podcast which she aptly named, 'I Don't Know How You Do It' to explore the question more deeply. Each week, she interviews someone whose life seems unimaginable from the outside. Through the podcast, Jessica hopes to show listeners that there isn't a magic answer.  We can all do it, no matter what our circumstances. Each day, we all get out of bed and do it and so can you.

Communication is such an important part of the human experience. We all come from different backgrounds and with different experiences, but being able to communicate with each other and share our own perspectives brings us closer together. When Chezik's 3-year-old son, Yori, drowned in a backyard pool, she was unexpectedly thrust into a completely new world and forced to learn a new language. This was the language of grief.

Over the next year, Chezik was drawn to other grieving families, especially those who had lost children to drowning. She felt very strongly that she needed to do something to try to decrease the number of drowning victims which is the #1 cause of death in young children. Since Chezik had a background in film production, she knew that the best way for her to get the message out would be through film.

What resulted is a simply beautiful documentary called 'Drowning in Silence' (available to watch on Amazon Prime or free on Tubi). In the film, Chezik shares Yori's story as well as the stories of other children who were drowning victims. Through these stories of amazing young children, she calls for action for all of us to do our part in decreasing the number of drowning victims. These actions include having an adult as a designated 'water watcher' (much like a designated driver), encouraging all young children to wear life jackets within 100 feet of water, and even working to provide swimming lessons for young children free of charge. In addition to making this powerful film, Chezik also started a nonprofit organization (nomoreunder.org) to help with education and provide free swim lessons to children, especially those of black and brown communities who are at higher risk of drowning.

Chezik's call to action profoundly affected me. Watching her film not only changed the way I think about drowning on a personal level, it changed me as a pediatrician as well. No matter how much information I feel like I need to give parents during a well-child visit, I will never again neglect to remind parents of the risks of drowning and provide information to help protect children as much as possible.

I have thought a lot recently about blame in the context of grief. When a child dies, it is natural for feelings of blame to emerge. Whether we blame ourselves, blame our child, blame another person, or even put the blame on God, there is a lot of it to go around. Additionally, others can be very vocal about where they feel the blame should be placed when our child dies. This is often done through social media when people do not think at all about the feelings of others before throwing out hurtful comments.   Initially, after our accident, It felt important to place the blame somewhere. In some ways, the blame was actually useful to me. I could put on boxing gloves and hit a punching bag imagining I was damaging the car that hit us. It was a release for my anger and other scary emotions. In other ways, however, blame was my enemy from the beginning. I blamed myself for all of us being in the car at that moment. I imagined scenario after scenario where I had done one thing differently that would have saved Andy. Eventually, however, I came to realize that no matter whether I blamed another person or myself, blame had become a poison. While drinking that poison every day, I was not able to begin healing.   For me, the cure to the poison of blame was forgiveness. Forgiveness allowed true healing to begin and helped me feel more like myself. I was able to let go of the bitterness and anger that accompanied the blame. I have heard from others and remember thinking to myself that if I reached a point of forgiveness, that would mean that I was somehow OK with Andy dying. Let me be perfectly clear. I am NOT OK with Andy's death. I will miss Andy every day for the rest of my life. When I think about his life getting cut short I feel tremendous sadness and even some anger, but I no longer let the need for blame consume my life. That is the difference between who I was five years ago and who I am today. I hope that in their own time and way, every bereaved parent will be able to let go of the poison of blame.

From the first email I received concerning Gwyneth and her son, Laird, I was struck with how important friendship was in Gwyneth's life. You see, Gwyneth was not the one who first wrote to me about her story. It was her dear friend, Caroline. Caroline wrote that Laird had been her son's best friend and that she had promised to do whatever she could to help her in her grief journey and her quest to 'sound the alarms about the fentanyl epidemic.'

From the first moments of my conversation with Gwyneth, the theme of friendship overwhelmed every part of our discussion. As she introduced me to Laird, I was struck by what a good friend he was to all around him. Classmate after classmate approached Gwyneth after Laird's death telling her that he/she was Laird's best friend. She heard multiple stories of Laird sticking up for classmates if others were picking on them. He was truly an amazing young man.

After Laird died from fentanyl poisoning, Gwyneth focused on friendships to help her get through. Friends didn't just ask her if she needed anything, they brought her groceries and made her meals. They stayed at her side through all of the dark times. Shortly after Laird's death, Gwyneth and her family began participating in KinderMourn, an organization based out of Charlotte, North Carolina, offering support groups for bereaved children and their parents. This group has truly been a lifeline for Gwyneth. I could hear her voice sound a little stronger when talking about what she has learned in her support group. The friendship those other bereaved parents give her has been incredibly precious to her. I don't think she knows how she would have made it through the last year without them.

Even after all of this, Gwyneth had one last 'friend' to talk about. This 'friend' is grief itself. We often think that grief is something to fight against, but Gwyneth reminds us that we should really treat grief as a friend. Grief will be a part of life until the day we die. It will be our companion through times of sorrow as well as times of joy. We need to hold it close as we would a dear friend.

From the first email I received concerning Gwyneth and her son, Laird, I was struck with how important friendship was in Gwyneth's life. You see, Gwyneth was not the one who first wrote to me about her story. It was her dear friend, Caroline. Caroline wrote that Laird had been her son's best friend and that she had promised to do whatever she could to help her in her grief journey and her quest to 'sound the alarms about the fentanyl epidemic.'

From the first moments of my conversation with Gwyneth, the theme of friendship overwhelmed every part of our discussion. As she introduced me to Laird, I was struck by what a good friend he was to all around him. Classmate after classmate approached Gwyneth after Laird's death telling her that he/she was Laird's best friend. She heard multiple stories of Laird sticking up for classmates if others were picking on them. He was truly an amazing young man.

After Laird died from fentanyl poisoning, Gwyneth focused on friendships to help her get through. Friends didn't just ask her if she needed anything, they brought her groceries and made her meals. They stayed at her side through all of the dark times. Shortly after Laird's death, Gwyneth and her family began participating in KinderMourn, an organization based out of Charlotte, North Carolina, offering support groups for bereaved children and their parents. This group has truly been a lifeline for Gwyneth. I could hear her voice sound a little stronger when talking about what she has learned in her support group. The friendship those other bereaved parents give her has been incredibly precious to her. I don't think she knows how she would have made it through the last year without them.

Even after all of this, Gwyneth had one last 'friend' to talk about. This 'friend' is grief itself. We often think that grief is something to fight against, but Gwyneth reminds us that we should really treat grief as a friend. Grief will be a part of life until the day we die. It will be our companion through times of sorrow as well as times of joy. We need to hold it close as we would a dear friend.

As Candi sat in the ER after losing her 5-year-old son, Asher, tragically in a farming accident, she wondered how life could go on. The pain was just too great. Candi had seen a therapist for years and knew that her therapist was also a bereaved mom. Candi asked her sister to ask the therapist what she was supposed to do. She answered, "You circle your wagons, and just hang on."   Honestly, in the 6 years since losing Andy, this may be the best piece of advice I have ever heard. I love the visual that it brings to mind. For listeners who may not be familiar with the saying, 'circling the wagons' was done as wagon trains headed west. Each night, when the travelers stopped for the night, they formed a large circle made up of their wagons. They would keep the camp and their livestock inside this circle. This way they could keep the most vulnerable inside, protected from bandits, wild animals, and even stormy weather. Candi's family and friends were great at circling the wagons. Candi says she felt like a ghost for the first whole year, but somehow, her family remained fed and her other 5 kids continued to participate in school and activities. The circle cared for her when she could not.   Over the past 3 years, Candi's wagon train has changed. As she became involved in my online support group through Starlight Ministries and met other bereaved moms, they joined her wagon train to be her support. Candi says that she was a sponge, reading book after book on child loss. Recently, she started a bereaved moms group in her own rural community in Utah as well. I would say that instead of being the protected one at the center of the circle of wagons, Candi is working to transform herself into a wagon master. Recently, Candi's extended family suffered tragedy again when her sister lost her own daughter in a car accident. Candi felt helpless knowing there was nothing she could say to make her sister feel better, but Candi knew exactly what to do. She instructed that wagon train to circle up again, and she now sits with her sister in the dark, scary place holding her while they both just hang on.