Marry Forrest, Richard Engel’s wife, is speaking out after the couple’s son Henry died from complications of Rett syndrome last August.
Henry was just six years old.
In a personal essay shared on Today.com, Forrest described the “surreal” week she spent with her son’s body before he was cremated.
“That period of my life is a blur, but those hours with Henry’s body are vivid in my mind,” she wrote.
In 2018, Engel shared that his oldest child, Henry, had been diagnosed with Rett syndrome, a rare neurological condition with no cure.
The decision to share the personal news with the world was tough, but Forrest believed it might help other families who might be struggling to find a diagnosis for their child.
“It’s raw and painful and very personal, but hopefully other people will see this and feel a little less alone and we will too,” she said at the time.
In 2022, Engel shared an update that no one wanted to hear. Henry was not doing well.
“His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo,” he wrote in May 2022.
In August Engel broke the news to those following Henry’s story. “Our beloved son Henry passed away.”
Following his death Forrest found herself at a loss.
“Ever since Henry was born, I had clung to routine and schedules to feel a sense of control over a situation that really couldn’t be controlled,” she wrote.
When he died, “so much of my routine went out the window.”
“But without even realizing what I was doing, I created one last routine for us.”
For the week leading up to Henry’s cremation Forrest went to the funeral home to see Henry’s body. She visited him every day at 9 a.m. and 5 p.m.
“I’d go into the room and cry, stroke his hair and face and rest my head next to his. I brought a different assortment of books and toys each time. I’d push the buttons on the toys and listen to the sounds, which I had heard so many times when he had pushed them.”
At first Engel was “hesitant” about her way of dealing with grief.
“He didn’t know if it would cause me more pain to have this ritual that I had created, but he came with me. He realized the value in having this time to do the impossible: attempt to say goodbye to Henry.”
One day even Engel joined Forrest at the funeral home to say goodbye to their son.
“Grief makes you do some seemingly weird things. Or maybe grief makes us behave in a way that is our truest self, because every impulse I had felt completely organic.
This might just be one of the most beautiful things I’ve ever heard. Yes, some people might find it weird, but if it helps a person move through their grief than I say it’s fine.
My thoughts and prayers are with the Engel family as they continue to deal with the grief surrounding their son’s death.