Remembering Joshua

In 1991, Joshua Daniel entered the world as a preemie with several medical issues. As his parents, we were grateful and thought we could handle it since we already had a daughter and two sons. We were excited when Josh was discharged from the neonatal intensive care unit and didn’t think much of the genetic testing results that showed a high propensity for developing neurological issues in the future.

Years later, we were headed to bed when I heard a noise coming from Josh’s room. I will never forget the sound of tongue clicking and gurgling. I ran down the hall and screamed to my husband, “Call 911 … Josh is having a seizure!” Josh was stiff as a board with uncontrollable jerking of his arms and legs. He continued seizing as the paramedics carried him out of the house in a blanket, loaded him in the ambulance, and whisked him away to the hospital. Our world as we knew it felt as though it was spinning out of control. At the hospital, Josh was diagnosed with epilepsy.

Throughout high school, we received numerous calls from school nurses, administrators, case managers, and his friends that 911 was called due to the intensity and duration of his grand mal (tonic-clonic) seizures. Several trial medications were prescribed, but Josh continued to have multiple seizures. Despite this, epilepsy did not hinder him from doing what he liked to do. Josh prided himself on managing his high school football team and graduating when he was 21 years old. At his high school graduation, after receiving his diploma, Josh received bear hugs from the assistant principal and case manager, who often called us when he experienced a seizure. There wasn’t a dry eye in the auditorium that day.

After high school, Josh’s neurologist recommended Vagus Nerve Stimulation (VNS) to help control his seizures. We were all for it and after much reluctance, Josh agreed to an implanted VNS device in 2012. He went on to attend vocational school, despite having breakthrough seizures. He was determined to live life to the fullest and he always bounced back from his seizures and injuries.

After vocational school, Josh moved back home and got a part time job at a supermarket. He would willingly “give the shirt off his back” to anyone in need and he thrived on making family, friends, and strangers laugh. He strived to make life easier for anyone he met along the way. He had a contagious smile, gave a thumbs up to everyone, and ended his phone conversations with “Too-du-loo”.

In late 2018, Josh moved into a place of his own. We were elated and proud that he had this opportunity to get his own place near his job. He had accomplished his goal of being independent. Josh also made sure to provide his roommate with a crash course on what to do to keep him safe while having a seizure. Even though, Josh lived on his own, he loved to visit us, especially for holidays and birthday family gatherings.

Josh visited us the weekend of October 12, and everything went well Friday and Saturday. On Sunday morning Josh slept in as usual, and we didn’t think anything of it when we did not see him early in the morning. But, when we checked on him, we found his body lifeless. He had passed away from sudden unexpected death in epilepsy (SUDEP).

We hope that by sharing our journey it helps parents who have also lost someone to SUDEP. We feel blessed and grateful to have had Josh for 28 years. We will forever hold the memories close to our hearts and look for signs of him letting us know he’s nearby.