Forever Bentley: A Mother's Journey Through Grief

Welcome to Forever Bentley, a place where I share my journey through grief, love, and healing after the loss of my son, Bentley.

Bentley was born on February 2, 2022, and from the very moment he entered this world, he was perfect in every way. He had the incredible ability to light up any room with his presence, instantly filling it with joy. Everyone who met him was captivated by his charm, and he had a way of making everyone fall in love with him. Bentley’s capacity for love was like nothing I had ever seen, and his bright, curious mind never ceased to amaze me. One of his favorite things in the world was watching Toy Story, a movie that brought him so much comfort and joy.

At just 4 months old, Bentley began having seizures. His second seizure, which occurred at 6 months, lasted a heart-wrenching hour. After a few more frightening episodes, just days after his first birthday, we finally received a diagnosis of Dravet syndrome, a rare and severe form of epilepsy. Prior to this, he had been misdiagnosed with febrile seizures. From the start, I knew it wasn’t just that. My husband and I worked tirelessly, searching for answers, determined to find out what was happening with our little boy.

Once we received the diagnosis, we decided it was best to consult with a Dravet specialist. Under the care of this expert, Bentley went from having weekly seizures to becoming 8 months seizure-free—the longest stretch we had ever experienced without a seizure. April 30, 2024, marked Bentley’s last seizure, and those months of seizure freedom were a precious gift we held close to our hearts.

Sadly, Bentley lost his battle with Dravet syndrome on January 11, 2025. The pain of losing him is beyond measure, but our love for him will never fade.

Though Bentley is no longer physically with us, his love, strength, and light will remain in our hearts forever. His memory continues to inspire and guide me each day, and this blog is my way of keeping his spirit alive.

Through sharing my journey of grief, love, and healing, I hope to connect with others who understand this painful path or who wish to honor Bentley’s story. No matter why you’re here, I am so thankful for your presence.

Bentley’s spirit will live on, and his love will always have a special place in my heart.

With love,

Blake