Kenny’s Story
As Kenny’s mom, how do I begin to articulate the story of my son’s life after his death? Honestly, I was a mom, who pleaded in my nightly prayers, “God, please let me hold on to my children during my lifetime, never take them before me”. Unfortunately, my life going forward, will be challenged with managing the pain and stigma that surrounds a grieving parent who lost a child from suicide. Still, I think of myself as a mom of two perfect boys, one, who lives here on earth; and my other who has chosen to live in heaven.
After Kenny passed away, not only will my heart be forever broken, but I developed a very empty feeling on what I call “his half of me”. When I became a parent of two, as all parents do, I become split in half. One half of me was “Kenny’s side”, the other was “Marty’s side”. I equally give 100% of myself to my children and I will never stop no matter what the circumstance. As hard as it is to continue life with half of myself empty, I am overflowing with love and joy as I continue to see Marty grow and succeed in life. I look forward to being a part of his life as he matures and spreads his own wings to fly. He is an amazing son, and has shouldered so much over the past few years after losing his brother. He truly understands the importance of living life, cherishing friends and family, learning to not take anything for granted, and that life is a gift not given.
Part of my healing process is learning how to fill my empty side for Kenny. Just because he is no longer with us physically, does not mean that I still can’t give part of myself to him. For this reason, I decided to open the Kenny Moore Foundation and become an active member is society regarding speaking out about mental health and chronic pain illnesses. Here’s my son’s story:
Kenny was born October 20, 1990. Of course he was the perfect child (as all parents say). He was just perfect in every way. His childhood was very normal and as he went through school, he always had good grades, lots of friends, and a heart of gold. His personality and mannerisms were very kind at heart. He never meant a stranger, and never had an enemy. He was a typical boy, liked playing sports and often could be a class clown. He had a very outgoing personality and as most would say was the “life of the party”. I do believe, with all my heart, that in the short 22 years that my son lived, he enjoyed his life and lived his life to the fullest with no regrets.
CHIARI DIAGNOSES (2004, Age 14)
Kenny loved to play roller hockey. One night during a hockey game, Kenny fell very awkwardly and although he appeared to be fine, when he awoke the next morning his left side was numb. He described the feeling of his arm, shoulder, leg and foot having the tingly prickly feeling of being asleep.
After a long day of MRI’s and x-rays, he was diagnosed with Chiari I Malformation and Syringomyelia. Up until then, Kenny never had significant symptoms of Chiari before the diagnosis. The only symptom that Kenny struggled with was a lot of upset stomachs. However, it was never severe enough that would alert doctors to check for Chiari. There was a time when he was checked twice for irritable bowel and Crones Disease; however, both times the results came back negative and the doctors thought Kenny just had a ‘”nervous stomach”. The Chiari diagnoses came as a complete surprise to Kenny’s pediatrician because Kenny didn’t have any of the “normal symptoms” during childhood development, i.e. trouble learning to crawl, walk, swallowing, etc.
What Is Chiari Malformation?
A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms.
Common Symptoms – Chiari has a wide ranging, diverse set of symptoms and affects everyone differently. Research show that 95% of patients experience at least 5 symptoms:
What Is Syringomyelia?
Syringomyelia (SM) is a neurological disorder where a fluid-filled cyst - or syrinx - develops inside the spinal cord. This cyst can grow over time, causing the spinal cord to expand and stretch nerve tissue. Eventually, the syrinx can cause permanent nerve damage and paralysis. One researcher noted that syringomyelia is not really a disease unto itself, because it is always the result of something else. By far, the most common cause of syringomyelia is a Chiari malformation. Although there are no strong statistics, about 30%-50% of people with Chiari also have syringomyelia.
Kenny’s first surgery was June, 2004 (age 14) at A.I. DuPont Children’s Hospital, Wilmington DE. He had the corrective surgery know as a Posterior Fossa Brain Decompression. This surgery is where they remove bone from the back of the neck to allow the brain stem room to flow freely and to release the spinal fluid that had developed in the syrinx sack. The surgery was successful and we thought Kenny’s Chiari journey would soon come to an end.
However, is 2009, Kenny developed Nystagmus in his eyes. We soon found out that this was a common symptom of Chiari and after another MRI, we found that the syrinx sack was once again filled with fluid. This time we decided to go to a specialist in New York at the Chiari Institute. Kenny’s new doctor would confirm that Kenny would need a 2nd Brain Decompression. Kenny was very reluctant to go through another surgery; however, when the neurosurgeon spoke to Kenny and gave him the pros and cons we decided a 2nd surgery would be best.
This time we would pack for New York for approximately 10 days. Once again on July 10, 2009, after Kenny’s high school graduation, Kenny underwent his 2nd surgery like a champion. It ended up being a long 8 hour surgery. The doctor’s report was great. He had successfully completed another brain decompression, cleaned up old scar tissue, and Kenny should be better than ever. Kenny had regained 98% spinal fluid flow and even the tiny bit of numbness that had stayed with him from the first surgery was better. Kenny had a very long (6-8 week) recovery including physical therapy, 68 staples in the back of his head (hence why Chiarians are called zipper heads) and a drainage tube. After the recovery process, Kenny seemed to look and feel better than ever.
From 2009 until 2013, Kenny matured into a very loving, kind, and responsible young man. He attended Community College for a while; landed a full-time job, and by 2013 had saved enough money to move out on his own, buy his dream truck (a 2013 Black Chevy Silverado), and in August 2013 added a new lab puppy (Carlisle) to our family. As his mom, if I had any concerns during this time it was only after Kenny turned 21, his desire to drink alcohol increased. Kenny and I had many conversations surrounding this. He knew my concerns and he always reassured me that he was just experiencing the “normal 20’s” stage. In my “parent mind” I reasoned that Kenny had been through a great deal for someone his age. He had been through 2 major surgeries, and dealt with irritating stomach issues through this high school years. I felt as long as I stayed on top of him and monitored him, this was a typical growing pain that most young 21+ year olds go through by experiencing the “being legal” age, and we would get through it.
On August, 23, 2013 sometime between the hours of 3:40am and 4:08am, Kenny (age 22) chose to end his life by suicide…
Thursday, August, 22nd started like a normal day – Kenny and I had made arrangements for me to meet him at 730am at the car dealership because his truck was due for service. Kenny called me around 10:30am and said his truck was finished. I took him to get his truck and he told me that he was going to stay in Milford to hang out with friends. I ordered him a pizza for lunch, and I went back to work. Around 330pm, Kenny called and told me that he was heading to his house to take care of his dog, shower, and he was going out with friends that night. I texted Kenny around 6pm and told him I loved him, have a good time, be safe, and I would talk to him tomorrow (Friday, 8/23). I really wasn’t worried because he was hanging out with his usual friends.
Friday, August 23…. 8am - I became the one…the mother that received the gut-wrenching unexpected knock on the door. Weak in my knees and sick to my stomach, the foggy silence and slow motion of life began to materialize in that instant. As two police officers and a victim crisis counselor entered my living room, my life as I knew it would come to a sudden and abrupt halt – time stood still.
“Mrs. Coverdale”? Hi, I’m …..” I could not hear a word anyone was saying. The only words my brain would comprehend at that very moment were the words “dead” or “alive”. Reality and breathing do not exist in that earth shattering moment of hearing the unthinkable, the words that every family fears, “Mrs. Coverdale, we are sorry to tell you that your son, Kenny, is deceased”. I understood those words loud and clear; however, the next words totally rocked me to the core of my being...”I’m sorry to tell you that Kenny’s cause of death was suicide”…
My life, as I knew it, in that instant abruptly ended. A new life would begin without my permission. The one life that I never wanted, the one life that I had always prayed so hard that would never be mine to live. I, all the sudden, became an “outsider”…someone looking in through a window of pain and despair at the nightmare that was unfolding right before me. I sat, only because I couldn’t stand, as one of the police officers slowly walked my husband down stairs to wake my sleeping son. Marty was awoken by his dad and a police officer standing over him to tell him his brother was dead.
Once Marty regained his senses he checked his phone, as instructed by the police officer, only to find that at 4:08am that morning Kenny had sent one last text, and it would be to Marty. After that moment, my memory is a blank. Somehow we gathered enough strength to go Kenny’s house to try to make sense of what had happened.
Upon driving near Kenny’s house it all became surreal, police, firetrucks, rescue vehicles, the sea of red and blue lights that automatically make your eyes close because your mind knows that you don’t want to see what’s in store ahead. My parents were already there because they had received a phone call from a relative stating that “something was going on in front of Kenny’s”. Over the next several days and weeks we would spend relentless hours trying to piece together what happened, what did I miss, how could this happen? All of the questions that I’ve learned are common when a suicide is involved.
The raw truth is this; Kenny went out with friends on Thursday night, 8/22. He arrived home to his house sometime around midnight. Chris (Kenny’s roommate/one of his best friends) and Courtney (Chris’ girlfriend) were at the house when Kenny arrived home. They both spoke to Kenny and had a normal conversation with him. Chris and Courtney went to bed. Sometime between the hours of 3:40am and 4:08am, Kenny sent three text messages – the first one to Chris; the second one to another close friend, and the third text to Marty. Kenny got his 20 gauge shot gun, walked out to the corner of his front yard, sat Indian style on the ground facing the road, put the shot gun up to his right temple and pulled the trigger….death by suicide; shot gun wound to the head are the words that are written on my son’s death certificate.
At 6:00am the morning of 8/23, Chris was the one who awoke to find the first text message Kenny sent. Chris was the one who ran frantically around trying to make sense of the text message he received. To my despair, Chris was the one who found Kenny lying in the grass, gun by his side. Forever, until eternity, Chris will be the only person who actually saw my son’s body (outside of the emergency responders). Kenny’s body had been taken away by the time we arrived. Although I fought hard and wanted to see my son, they would not let me. I, being Kenny’s mom, felt a tremendous amount of guilt because I was not able to save his life, so I should have been there to help pick him up and make sure they removed my son with the love, care, and dignity he deserved. It wasn’t until months later, after having a very candid conversation with the investigator (who knew Kenny and was a friend) took time to speak to me individually. We met at Kenny’s house and he “walked through the scene” with me and was able to show me three pictures of my son, which did not focus on the injury. At the very end of our conversation that day, he said something to me that helped me more than words can describe. He simply said, “Lorie, if you had arrived in time to see your son, would you have been able to let him go?” “No matter what, we had to do our jobs and take your son away”. Would I have been able to let him go? I had never thought of about “letting go” of my son under those conditions.
The significant message that needs to be broadcasted as loudly as we can is to think about mental health in general when dealing with any disease or illness. In our case with Kenny’s Chiari journey, there was never any discussion surrounding the affect that this genic disorder may have had on Kenny’s mental wellbeing. Can we blame Chiari 100% for his suicide? No, but could it have attributed? Yes.
After Kenny’s death, I reached out to his Neurosurgeon, simply just to ask could Chiari have played a part in Kenny’s mental make-up and was there any research or information that he could share that would shed some light on why my son may have chosen suicide. To my surprise, below is his response:
“We are actively involved in a number of projects that will be essential in the understanding of why this can happen. Many patients with Chiari/syringomyelia have associated conditions that are not linked by cause and effect but are probably linked by nearby gene mutations. We have recently identified a previously unrecognized constellation of findings in a large number of patients which include Chiari malformation, joint hypermobility, dysautonomia (including severe swings in blood pressure and pulse and intolerance of changes in temperature) irritable bowel syndrome, intermittent brain fogs, and severe depression. We are struggling to pin down these relationships. Some researchers call this group of things “central sensitization syndrome” and some clinicians link it with fibromyalgia. In any case it is definitely related to brain neurochemistry.
We are planning to look at spinal fluid for patterns of metabolites of the neurotransmitters to find a pattern that will allow us to study this phenomenon.
What I have come to learn is that Chiari could have played a part in Kenny’s mental health in two ways:
1. As the Neurosurgeon describes above, by simply having the disorder in itself, and having the Syrinx constrict the spinal fluid flow, changing brain chemistry or;
2. Merely just living with the pain and the symptoms that come along with having Chiari Malformation. I have learned that the one major complaint of Chiari patients is they live with constant pain. Furthermore, that any type of illness where chronic pain is involved, mental health needs to become a very important part of the wellness plan. Chronic pain leads to depression no matter what the illness.
The impact of how living with Chiari would affect Kenny’s mental health was never discussed. We discussed only the neurological impact this would have on him, his motor skills, walking, running, holding a cup etc.
If you read information regarding Project Semicolon (see links page), you will read a story about a young woman who had been given a strong dose of steroids for a ligament illness. One of the permanent side effects that she acquired from taking the medication was anxiety and depression that she now struggles with on a daily basis. My ambition here is to ask everyone to think of mental health and brain chemistry as you would any other organ in your body. If certain medications and diseases/illnesses affect other parts of your body, then ask your doctors how this could affect your mental health.
In summary, here’s what we are left with trying to make sense of my son’s death…
These are basically just the “technical” aspects of how I have tried to figure out why my son chose to take his life. There will be a lifetime of sadness within my heart and as his mom; I will always wonder “what did I miss”. I have chosen to share the truth about my son’s life and death. It is raw, but it is the truth about being a suicide survivor. Suicide and mental illness is not pretty and should not be ‘sugar coated’ or masked. One of my counselors described the painful conflicting ugliness of suicide by stating, “It’s that you hate the murderer, but you love the victim, and in this case they are the same person”.
My only hope is sharing my son’s story will help others, whether it’s giving someone the courage to reach out and ask for help themselves or give strength to family and friends to support a loved one in need.
Please feel free to email me directly at kennyg@kennymoorefoundation.org if you have any questions or if I can help in any way to support your need.