Episode 240: Josh's Mom
Losing a Child: Always Andy's Mom
I have a confession to make. This is a hard week for me. In three days, we will have to 'celebrate' Andy's 20th birthday. I have been thinking all week about what a 20-year-old Andy would be like. Would he have decided on a career path? Would he be dating a special girl? Would he still show some of his inner silliness? I'm sure that instead of me kissing the top of his head, he would be tall enough to kiss the top of mine. I'd like to think we would be headed out to visit him at college this weekend to make his birthday special. Of course, I will never know the answers to any of these...
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Episode 239: Randy's Dad
Losing a Child: Always Andy's Mom
What is a miracle? Many people have told today's guest, Freddie, that his son, Randy, was a living miracle. Few would have argued that point. Randy was diagnosed with cancer at 4 1/2 years of age. After conventional chemotherapy and radiation failed to treat his tumor, the family was told that Randy had 6 months to live. They turned to NIH studies, but none of those treatments ever made it out of the stage of clinical trials. His grandfather prayed over him and even instructed Freddie to rub a Bible up and down his spine. Randy was cured by these faith healings again and again. The boy who...
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Episode 238: Blake S's Mom
Losing a Child: Always Andy's Mom
When Sandy first contacted me after her son, Blake's death, I never imagined that less than 2 years later she would be sharing his story on the podcast. When Sandy wrote to me, it was only 6 weeks since Blake had died. The pain was palpable throughout her email. Her very last sentence to me read, 'This is the MOST excruciating pain ever!!' She was filled with anger toward the doctors who failed to diagnose Blake quickly enough and see just how sick he was. Sandy says that she was in a very dark place for over a year. She posted on social media about Blake, finding others to share her pain. She...
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Episode 237: Corban's Mom
Losing a Child: Always Andy's Mom
Last July 4th weekend, I had the honor of going to a very sacred space with two bereaved moms, Dixie, and today's guest and dear friend, Michelle. We retraced the steps that Michele and her family took on that fateful day on July 4th, 2020 when Michelle lost her amazing 19-year-old son, Corban, who drowned in Lake Michigan. From the first steps walking along that trail, I knew that we were doing something very special. I could feel Corban, Parker, and Andy. I could feel God walking along beside us. In the first years after Andy died, whenever we dove past the accident site where Andy died, I...
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Episode 236: Grief & Feeling Out of Control
Losing a Child: Always Andy's Mom
Recently, Gwen and I have been starting to struggle to find new topics to discuss on our Livestream episodes. Eric suggested doing an episode about how bereaved people can feel like life is out of control, especially early in grief. After Andy died, I felt like our whole world was spinning out of control. Life was suddenly going really fast and I just wanted things to slow down. The world was no longer a safe place for my family, and everything suddenly felt so scary. As the podcast episode started this week, however, I asked Eric why he picked this topic. His answer completely surprised me....
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Episode 235: Jake's Mom
Losing a Child: Always Andy's Mom
We as grieving people often feel as if we are being judged by others. If I laugh or smile, will people think I am 'over' Andy's death? Will they think I don't care or think about him anymore? If people see me sad and crying, will they think that I should be doing better? Will they judge me and think that I should be able to keep my emotions in check? However, as much as we fear judgment from other people often we are the ones who are our biggest critics. We feel guilty if we laugh and smile. We feel shame when the tears come and emotions get out of control. When today's guest, Aleasha, talks...
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Episode 234: Chad's Mom
Losing a Child: Always Andy's Mom
When Susan's 19-year-old son, Chad, died in September 2020 during the pandemic, it was an extremely isolating time, but she and her family were also completely exposed. Chad was a healthy, young athlete who died from an extremely rare neurological disease called Weston-Hurst syndrome. This horrific disease is rapidly progressive and most often fatal as it attacks the central nervous system. Its specific cause remains unknown, but it is triggered by a viral infection. In this case, Chad contracted COVID while at college. Now, this family was not only mourning the death of their beloved...
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Episode 233: Daniel's Mom
Losing a Child: Always Andy's Mom
From the first minutes of listening to this week's podcast, you will feel an overwhelming sense of caring and compassion. While in middle school, Marisol's son, Daniel, went on a church trip to Niagra Falls and fell in love. Now, you might think that he fell in love with the beautiful waterfall, but it was the people who impacted Daniel. He saw that beyond tourism, there were people who were truly in need. Daniel felt a strong desire to help. While in high school, Daniel knew he wanted to leave his home state of Maryland and move to western New York to become a doctor. He found a program at...
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Episode 232: Luella's Mom
Losing a Child: Always Andy's Mom
Today's guest, Carrie, and her husband Ben attended their first retreat for bereaved parents only two months after their toddler, Luella, died from bacterial pneumonia. They drove 10 hours from their home in central Illinois to in northern Wisconsin. Carrie said that it was the first time they had felt seen and held since Luella had died. The support they received was amazing and on that 10-hour drive home, Carrie and Ben decided they wanted to make their own retreats locally for people in their community. Their home was a large, beautiful cabin on 10 acres surrounded by trails and...
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Episode 231: Ruben's Mum
Losing a Child: Always Andy's Mom
Rituals. Different cultures have rituals for various life events. There are beautiful, lavish rituals associated with marriage and births. In Latin American culture, a girl's 15th birthday, her quinceañera, is celebrated as her social debut as a young woman. Rituals abound in many aspects of life, but some of the most powerful rituals are those surrounding death. I have heard many stories of funerals and celebrations of life after the deaths of children all over the world. Some are small and private and others are big and public. We do what feels right to us in the moment following our...
info_outlineNine years ago, when 6 week-old Corey was admitted to the hospital for generalized weakness, everyone assumed that he had some sort of infection. His mother, Stephanie, thought that he would get some medication, maybe some IV fluids and then she would be able to take her little boy home again. On the third day of his hospitalization, however, Stephanie overheard a few residents talking. She heard the use the term, 'SMA' for the first time. A young doctor started a sentence with the words, 'if he lives to 6 months' and 'if he lives to a year.'
Suddenly, Stephanie's life was turned up-side-down. Corey did indeed have SMA (Spinal Muscular Atrophy) and he actually did not live to see 6 months. When Corey was born, a diagnosis of SMA was a death sentence. Only months after Corey was born, clinical trials for a treatment for SMA were developed. Now, that medication is so successful in treating SMA that we are really nearing the day that these children will live with SMA and not die from it.
Since Corey's death, Stephanie has done so much to support this cause. She was instrumental in getting SMA testing on the newborn screen in the state of Ohio. She speaks to groups nationally as well. I know that after losing a child, I want to do anything that I can to prevent another parent from feeling my same pain. Stephanie feels the same way and her work has truly helped prevent some many deaths.
Today, we talk about her work in the Cure SMA organization, but we also discuss her personal grief journey as well. Stephanie talks about the pain of returning home without her baby boy in her arms. We discuss learning to help her then 5 year old daughter grieve in an open, honest way and the pain that comes with watching our children grieve.
Now, so many years later, there are fewer and fewer people who remember baby Corey, and that makes some days even harder than in the beginning. It certainly make those who remember and understand the lasting pain all the more precious.