• Mary Forrest Engel talked about the week she spent caring for their son Henry.
• Rett Syndrome is a rare genetic neurological illness.
• Mary said she would go back and do every second over again with Henry.

Mary Forrest Engel, the spouse of Richard Engel, is talking openly about the week she spent caring for their 6-year-old son Henry after he passed away on August 5, 2022.

Rett Syndrome is a rare genetic neurological illness, and in a personal essay published by a local newspaper, Mary described how she grieved over her son after his lengthy battle with it. “which he valiantly fought for almost seven years,” she wrote.

Severe physical and cognitive disabilities result from Rett syndrome.

Mary, 44, said she spent nearly a week seeing Henry’s physical remains at the funeral home after he passed away.

“As long as he remained a physical presence on this Earth, I wanted to be with him,” she wrote. “We sat with him in our home for hours. Changed his clothes. It was summer. I put shorts on him, and a T-shirt out of habit. I chose one of his softest, coziest ones.”

“That evening when the people from the funeral home came to get his body, I carried him to the car. It was the last time I would ever carry my beautiful Henry,” Mary said.

“How many times had I carried him in his life? Hundreds? Thousands? He was almost like an appendage to me; we were physically intertwined due to his disability and him needing me to move him around, to be his legs,” wrote Mary.

She continued, “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. And then he died, and so much of my routine went out the window. But without even realizing what I was doing, I created one last routine for us.”

Mary then talked about her time with Henry when she was in his company.

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“They would have him ready for me, and I’d go into the room and cry, stroke his hair and face and rest my head next to his,” she wrote. “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. Henry loved music. I sang some of his favorite songs and played others on my phone.”

“That period of my life is a blur, but those hours with Henry’s body are vivid in my mind. I would wake up feeling anxious to see him. Longing for him,” Mary continued. “Each time I went I would stay for about an hour, then leave the room and head to the front door of the funeral home before turning back for one last goodbye. It was so hard to leave, but we also have a younger son, Theo, who needed me, and he was in the forefront of my mind as well.

Richard Engel’s reaction to Mary visiting her son was revealed by Mary.

“My husband, Richard, was a bit hesitant about what I was doing at first. This kind of grief is unlike anything either of us had felt before,” she shared. “There’s no roadmap. 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.”

“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,” she added.

Mary Forrest Engel, however, disclosed that she and Richard ultimately had Henry cremated and “some of the ashes at a tree in a park that Henry loved.”

However, Mary revealed she and Richard eventually had Henry cremated and scattered “some of the ashes at a tree in a park that Henry loved.”

“For months afterward, I could see remnants of ashes when I visited,” she wrote. “‘He’s here,’ I thought … Six months later, I’ve now come to realize that he’s everywhere. Wherever I go and whatever I do, he’s with me.”

Mary continued: “I am thankful to have had that week. I know not every grieving person has the ability to do this, and not everyone wants or needs to. It was surreal, heartbreaking, gut-wrenching … and also filled with so much love. There’s just so much love, and that’s what has gotten me through.”

“Would I go back and do every second over again with Henry, knowing that there would be this much pain at the end? Yes. A million times, yes.”

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