Learning to Deal With Grief After Losing a Loved One to ADEM

By Chris Lopardi

Grief can often make you feel as if you are drowning in the ocean. I felt that way in May of 2020 after I lost my 7-year-old son, Mason, to acute disseminated encephalomyelitis (ADEM). At first, it feels like you are on this tiny raft in the middle of the ocean, and you are suddenly hit by a hurricane. There is sadness, tears, anger, regret, and worst of all, no hope for the future. We were nervous when we first learned the symptoms Mason was experiencing were caused by ADEM, but we had hope that he would get through it and life would go on like many other illnesses children get. A few days after Mason’s diagnosis, we learned that he wasn’t improving, and by day three he lost all brain functions. At that moment, life as I knew it was over. The loss of a child brings so much pain and sadness, it can bring you to the brink of madness. Nothing made sense and moving forward seemed impossible. Two years later, I’m here to tell you that moving forward is possible, but it takes time, and it is still difficult.

After Mason went to heaven, which is how we like to say it in our house, it was like our family had to start all over again. You have no idea how much a person fits into the puzzle of your life until that piece is missing forever. The struggles of dealing with my own grief, my wife dealing with her grief, and my other children dealing with theirs brought our family to the edge of disaster. As we struggled to keep our family together and learn our new life without Mason, the hurricane felt just as strong as the day my wife and I held Mason in our arms as he went to heaven. 

 So how did I make the jump to start moving forward? This is going to be different for everyone dealing with grief.  First and foremost, I knew that my boy wouldn’t want me to live the rest of my life in complete misery. I knew I was going to do something positive from the worst thing ever in my life. My wife and I decided to start a nonprofit in Mason’s honor. I was always a person who loved to run, and Mason did as well. I started running after Mason passed, and I would dedicate each run to his honor by posting it on social media with a picture of a memory. That is how the Miles for Mason Memorial Foundation got its start. The foundation is still in the early stages, but many of the legal documents are completed. Now, we are just waiting for federal approval. Our goal is to make ADEM awareness and studies as important as Cancer awareness and studies. We, of course, have a long way to go, but we want to prevent ADEM from hurting others in the future.

There is so much more that can be said about grief and loss, but there can be a light to move forward. I will never stop being sad about losing Mason, nor will I ever feel the same as I did before. I have three other children who need me. I cannot live my life in complete sadness forever, nor do I want to. They say time heals all wounds, and while I think this is a wound that will never heal, I can say that time dulls the pain. I sought help from mental health experts, made positive goals for the future, and reprioritized life in general. I miss my boy, and I hope he is proud of what we are doing for him in his honor. Hopefully, the Miles for Mason Memorial Foundation and SRNA can work together to bring an end to the difficulties and sadness ADEM brings to this world.