My son, Joshua James Godfrey, was born on January 8th, 2017 with so much hope and anticipation. I couldn’t have been more excited, nervous and anxious to be a father! From that moment on, Kate’s and my life were changed forever, as it was no longer about just us, rather him. We were living in Half Moon Bay, California at that time, and although we liked where we lived, we knew we needed to move somewhere else where we felt we could provide a better life and opportunity for Joshua and our family. We chose to move up to Bothell, Washington (suburb of Seattle). Bothell is a great town with a good family life, cute parks and highly-rated school districts. We purchased our dream home with room for Joshua to grow and prosper. We were excited for our new Washington adventure to begin!
The first few months were great! We explored our new surroundings, and my wife and I both started new jobs that we loved. However, things changed in July 2018. I remember it was morning and we were getting Joshua dressed and ready for breakfast. However, something happened, his body started to tense up and the side of his mouth and right side of his body started to clinch up as he started to stare off into space. “What was this? Was he having a seizure?” as I really never witnessed one before. When he came too, Joshua was really out of it. However, he mustered up the strength to have breakfast. After eating, Joshua again had two more seizures and we knew something was seriously wrong. We ended up bringing him to Seattle Children’s Hospital.
Seattle Children’s Emergency Room were great. Very responsive, kind and caring for Joshua. I remember the Neurologist finally made their way to evaluate him. They said he had Epilepsy and needed to get started on anti-epileptic medication immediately. “Wait a minute? Epilepsy? What is that? There is nothing wrong with my sweet little boy, how can he have something wrong with him?” Thus began our journey and new relationship with this new disorder, Epilepsy.
The next year and a half were tough on our family, especially Joshua. He had numerous seizures. Some days he would average anywhere from 20-40. Nothing is more heartbreaking than when your 1-year old is crawling and the next thing you hear is a big “thud!” because he fell to the ground in spasms because of a seizure. We had numerous trips and stays at Seattle Children’s Hospital because of this. He had what was known as intractable epilepsy, meaning that his seizures were not being controlled with medication. I remember December of 2018 during a stay in the hospital, Joshua had an MRI for further evaluation, the Neurologist came in to tell us that he had signs of brain atrophy and they were not sure why. Tears streamed down Kate and my face. What was happening to our boy? He was run through numerous tests, genetic tests, blood draws, eeg’s, etc…still nothing coming back conclusive as to why he was having seizures. During this time, he was also diagnosed to have ASD (Autism Spectrum Disorder). Witnessing your child go through all of this is absolutely heartbreaking and nothing I wish upon any parent.
Finally, Joshua was able to find some control of his seizures. He was taking 5 different medications twice daily. I know, seems like a lot, and it was, but it was helping! He also started ABA (Applied Behavior Analysis) Therapy in addition to the Physical, Occupational and Speech Therapy he was already getting weekly. Unfortunately, since having seizures, Joshua lost all ability to speak. We knew what he wanted through his body language. Joshua was the absolute sweetest boy you would ever meet. He had this infectious smile that would light up a room and your heart. He had the biggest, cutest double dimples. He was the bravest person that I ever knew. With all these seizures, hospital visits, therapies, he never threw a tantrum. He would smile through it all. He brightened up the lives of everyone he has ever met or those who have seen him through our social media posts. He was such a trooper through everything. He loved taking walks, hikes, playing with balls, books, people, and especially food. He was such an amazing little boy who would exude love to everyone around him.
Then on April 23rd, I received the phone call. I was driving back home early Sunday morning after a con-ed conference in Portland. Kate was on the line. Initially I assumed she was just saying hi before going to wake up Joshua. This was not the case. She told me to pull the car over immediately. Stricken with panic, I started to pull over, asking what was wrong. Then it hit me, “Is Joshua ok?” That’s when she struggled to tell me what was happening. She was waking up Joshua, but noticed that his legs were splotchy and he was very still. When she turned on the lights, there was no movement. She tried to rub his back, but he was stiff and cold. Trembling, she turned Joshua over and his face was blue, purple, and swollen, he was gone. I wish I had the right words to explain what came over me, but I don’t remember. My soul leaped out of my body and time stopped. I knew I had to get home as fast as I could. I couldn’t even begin to imagine what this was like for Kate. She was by herself, and our sweet boy was lifeless in her arms in his bed. She called 911 immediately and the police/ambulance were there in 3 minutes. They burst through the door and rushed up to Joshua’s room and sequestered Kate to our room. The extreme emotions that she was feeling in that moment, our son was gone, not knowing how to help, and per protocol, as the police were not aware of Joshua’s condition, being interrogated as to what happened while they investigated our house trying to determine a cause of his death. My job was to get home, but those few hours for Kate were a living nightmare. After the questioning and searching, based on Joshua’s condition, it was concluded that he passed away from SUDEP.
I finally made it home (still not sure how as I don’t remember the drive) and immediately embraced Kate, with no words said, only uncontrollable tears. A very nice Chaplin was at the house to comfort us while we waited for the coroner to examine our son. The sitting and waiting that pursued after this seemed like it lasted an eternity. All sorts of emotions came violently flooding the body that it was hard to process what our new reality was going to be. The corner finally came and before he was to take our son to the medical examiner’s office, we had our chance to say our final goodbyes. Nothing was harder than walking up those stairs to his room. It felt like I weighed 1000 pounds, and my legs were made of jello. The uncontrolled shaking and tears could not be stopped. When I got to his room and saw him lying there (the corner positioned him in a more presentable manner), I couldn’t even recognize the noises coming out of me. This was the last time I was going to see him, my last memory, I couldn’t hold my emotions together. I stroked his beautiful hair one last time, told him how much I was going to miss him, that he would be in my heart forever, and gave him one last kiss on the forehead.
What is Epilepsy:
Epilepsy is a neurological disorder in which nerve cell activity in the brain is disturbed (abnormal electric charges) causing a seizure. It may occur as a result of a genetic disorder or an acquired brain injury, such as a trauma or stroke. Epilepsy is the 4th most common neurological disorder in the world and diagnosed if you have two or more seizures at least 24 hours apart. 1 in 26 Americans develop Epilepsy.
What is SUDEP:
Sudden Unexpected Death in Epilepsy is the most common category of death in Epilepsy, however, one of the least understood or talked about. A death is referred to as SUDEP when a seemingly health person with epilepsy dies unexpectedly and no clear reason for the death can be determined. An autopsy is required to rule out other causes of death. Criteria used to determine whether a death is due to SUDEP are: 1) The person has epilepsy, 2) died unexpectedly, 3) death occurred suddenly and during normal activity, 4) obvious medical cause of death could not be determined at autopsy, 5) death was not the direct result of status epilepticus
For More information on Epilepsy and SUDEP, looking for ways to get involved, and/or to Donate to this cause, please visit the Danny Did Foundation!
My Inspiration and Why:
Let me tell you that grief is a bitch! Psychiatrist Elisabeth Kubler-Ross first highlighted the stages of grief in the 1960’s with the idea that we go through these stages of grief in order before getting to the next one. In going through it currently, that is a load of crap! All stages of grief hit you at once and keep pounding you like a knockout punch from Mike Tyson. I am still very new in this grief journey, but you do learn to survive to the next rounds and the punches come more in waves with a mixture of jabs, hooks and body punches, but you don’t go down. You continue to push to the next rounds of a never-ending fight. Now, the grief is always going to be there. The hole in my heart is always going to be there with the loss of my son, but I am trying to carry on to the next day. I don’t have the answers on how to do it or why we do it, but we make it to the next day.
The day that Joshua passed, the Chaplin that was with us said we have to find ways to release the built-up cortisol from all the stress and emotions we are and will be continuing to deal with. Through stress, your adrenal glands make and release the hormone cortisol into the bloodstream. This is called the “stress hormone” and acts on our flight or fight system. We release this hormone with normal daily activities. However, with extreme stress, this hormone can be dangerous, even deadly to the body. So, she encouraged us to find something to balance that. At the time, Kate was training for the San Diego Rock and Roll ½ marathon, and I was just gradually building up running mileage. The Chaplin encouraged us to go for a run the next day, even if it was just a small run, as the body releases the brains feel-good neurotransmitter endorphins to help balance the excessive cortisol. To be honest, running was the absolute last thing on my mind and one of the last things I wanted to do. Nevertheless, since we did not know what to do with ourselves, we went for a 4-mile run the next day. I am not going to lie to say that I magically felt better, but something happened. The pain I was feeling seemed to be put on a temporary pause for that run, did not go away, but did not get worse. This same response seemed to happen in subsequent runs, and it seems the physical fatigue and endorphin release was doing battle with the grief during my runs. I had my better days on the days that I ran and felt worse the days I did not (as a physical therapist, I am not advocating running every day, cross training with cycling, strengthening, other activities had and will have a similar response).
My INSPIRATION and why for running and to continue to run is for my son Joshua, to keep his memory alive. I feel physically and mentally better when I run and am consistent with training. My wife and I are signed up for future ½ marathons with the goal to “Run4Joshua” and keep his spirit alive in us. Also, we would like to raise awareness and funds for SUDEP and Epilepsy research through the “DannyDid Foundation” (See link on my page for information and info for donations to this great cause). Don’t get me wrong, I want to stay healthy and be physically fit as well, but my son is my INSPIRATION. Thinking of him smiling down upon me with his beautiful double-dimple smile as I go for a run, encouraging me, no matter how tired I may be and not to give up, he is my INSPIRATION!