MY STORY OF NAVIGATING LOSS.

I completed her paperwork first. I kept telling her they were performing CPR on him and begged for her to let me back. When I type those words – I feel what I felt that day and it’s overwhelming. By the time I was allowed to go back, I literally ran into the doctor. All I could say to him is “Has my son died”? Two words, “Well yeah”. Now in all fairness, he did not know I was going through WWIII with the receptionist up front to let me back there. All I remember is hearing the worst, most guttural scream I’ve ever heard in my life. Only to realize it was coming from me. It was an out-of-body experience. I was on the ground and felt like I wanted to stop time and melt into the wall all at the same time. If this was real – my life was OVER, because life simply didn’t work without him. 
I couldn’t breathe … I HAD to see him. All I wanted to do was hold him, comfort him and tell him it would all be ok. How could he be so WARM yet not wake up when I touched him and talked to him?
You never forget that moment, do you? I remember how he looked, the temperature of the room and the rain followed by the double rainbow. That time is vivid – the days afterwards … not so much. For many many days after that, it’s a blurrrrrr with snippets of memories with family flying in for the funeral. The days, weeks and months that followed included every emotion you can imagine. Everyone went home and back to their lives – my home was absolutely quiet. TOO QUIET. I felt disconnected, numb, angry, sad, severely depressed, dumbfounded, guilty, and 100% alone. Nights were the worst. I would stop and get takeout on my way home from work. I came home and ate dinner in my bed and watched tv as I cried until I fell asleep. I couldn’t bring myself to be in the living room. That room was for the living, and I was just surviving. That went on for months. Initially people would call and check on me, but I just wanted to be left alone. And eventually, I was alone. Holidays were quickly approaching and before I knew it, it was time to decorate for Christmas. I wanted NOTHING to do with Christmas. I had bought multiple gifts starting in September but just sleeping through the entire day sounded like the best way to celebrate. BUT my one-year grandson’s excitement for the day made me get up and get dressed and spend it with him and our family. 
The weight of guilt I had was almost unbearable. You see, he had Epilepsy that intensified and progressed over many years. Three months before his death, he had Status Epilepticus (he had 6 seizures in a four-hour period) which hospitalized him for several days. But we found a new physician (long story) who got him qualified for a 3 staged Epilepsy brain surgery. He didn’t live long enough to have it done. I played the “what if” game in my head for a long time. What if I had pushed for a different neurologist earlier? What if I had done this or that? Why didn’t I do this or that?
And then one day, I remember feeling a slight sense of peace – it had happened gradually BUT maybe joy could be a real thing again? I started slowly watching a TV show here and there in the living room and eventually even ate on my couch instead of the bed. And one day, I was okay being here on Earth and not in Heaven with Nate. I was never suicidal but had no interest in being here. Yet here I was – one day I woke up one day and WANTED to be alive. I wanted to spend time with friends and family. I needed people again. And then one day, I remember feeling a slight sense of peace – it had happened gradually BUT maybe joy could be a real thing again? I started slowly watching a TV show here and there in the living room and eventually even ate on my couch instead of the bed. And one day, I was okay being here on Earth and not in Heaven with Nate. I was never suicidal but had no interest in being here. Yet here I was – one day I woke up one day and WANTED to be alive. I wanted to spend time with friends and family. I needed people again. 

About six months after Nate’s death, a nurse from my son’s neurologist called. She spoke to me about a clinical study SUDEP (sudden unexplained death of an epileptic patient). They wanted to include Nate in their study. It required access to his autopsy results, blood/tissue samples, and medical records. It hit my heart hard. But at the same time, it was a way for Nate to help others. He would want to help anyone else avoid what his family went through. And just like that – he was a part of history.
Every birthday and death day – friends and family go out to eat Chinese to celebrate his life and keep his memory alive. His niece and nephew ask about him all the time & I share stories, funny and wonderful stories. Doing this makes me so happy and I love that they want to know him. 
Finding “members of the club” & connecting with them has also helped a ton for me to realize I’m not alone. They understand my grief and I understand theirs. Talking about grief and healing helps take the walls down. This may not work for everyone initially; but just remember it is OKAY to seek connection when you’re ready.
With time I learned to honestly not give a crap about what people thought about how I grieve. But guess what? It’s not my business what they think and its none of their business to judge me. Grief has no ending. Some days are good, and some are tough. No one has a RIGHT to judge how you navigate grieving! Trust yourself – you know to reignite your life; I promise.
For me, it took a long time to release my guilt. If I’m being honest, it tries to insert itself into my life all the time and it requires me to silence those negative thoughts. I now know I did the best I could as a mother to take care of him. Ultimately, I had to learn I had no control over him dying. That in itself, was a very hard pill to swallow. There are so many things in life we can’t control – we can only do the best we can at the time. I had to be ok with giving myself grace.

I encourage you to give yourself grace, compassion and forgiveness. It will help you in your grieving journey. Grief unfortunately never leaves but over time it does become more manageable. It is a lifelong process. And you are not alone, even when you feel like you are!
Do you have your own story you’d like to share? I’d love to hear from you. Our “club” can draw strength from each other. Everyone has a story – and yours is important.


Still dreaming and believing,

Chris.