"As long as he remained a physical presence on this Earth, I wanted to be with him," she wrote.
Mary Forrest Engel, the spouse of Richard Engel, is opening up about the week she spent with their 6-year-old boy Henry after he died. The young boy passed away on August 5, 2022, after a long struggle with Rett Syndrome, a rare genetic neurological disorder, per PEOPLE.
In a personal essay released by TODAY, Mary described how she grieved for her son after her son "valiantly fought" the disease "for almost seven years." Mary, 44, said she spent about a week visiting 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 wrote. "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," the grieving mom added.
The mom then described a routine she set unwittingly. "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," she wrote. The people working at the funeral home "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 added.
Henry having fun during physical therapy today 😀 pic.twitter.com/X5DUI9foXo— Mary Engel (@MaryKForrest) February 27, 2018
Richard Engel was affected by Mary's visit with their son, she revealed, adding that since they had never before gone through this kind of sorrow, it is unusual for them right now. "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.
On @rarediseaseday I’m thinking of people around the world living with rare diseases and particularly about our son Henry, who has Rett Syndrome. Despite all that he faces, he is relentlessly brave, sweet, funny. He is magic. For info on Rett: @Rettsyndrome ❤️ pic.twitter.com/GqyZKERjDe— Mary Engel (@MaryKForrest) February 28, 2022
Mary, however, disclosed that she and Richard ultimately had Henry cremated and spread "some of the ashes at a tree in a park that Henry loved." The mom revealed that she felt that she could see the remnants of the ashes for months after that.
The mom shared that she's most "thankful to have had that week," adding that she understands that not everyone gets this. "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," she wrote.
"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," she concluded the moving piece.
Cover Image Source: YouTube | TODAY