Richard Engel's wife Mary Forrest Engel is trying to find the good in saying goodbye.
More than six months after their 6-year-old son Henry died following a battle with Rett syndrome, Mary is sharing a glimpse into the family's grieving process.
"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," Mary wrote in an essay for NBC News published Feb. 22. "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."
In the week leading up to Henry's cremation, Mary would visit her son's body at a funeral home twice a day. Amid her mourning, she also made sure to celebrate his life with his favorite activities.
"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."
She also played his favorite songs from Lizzo and Katy Perry during her private visits.
While Mary said the week after Henry's death was a blur, she has vivid memories from the hours she spent with his body.
"Grief makes you do some seemingly weird things," she explained. "Or maybe grief makes us behave in a way that is our truest self, because every impulse I had felt completely organic."
Richard, 49, and Mary, 44, later scattered some of Henry's ashes in a park that he loved. Six months later, the pair—who also shares 3-year-old son Theo—continues to feel Henry's presence.
"He's everywhere," Mary noted. "Wherever I go and whatever I do, he's with me. 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."
Henry first came to Texas Children's Hospital's Duncan Neurological Research Institute in 2018 to care for his Rett syndrome, a genetic brain disorder without a treatment or cure.
According to Dr. Huda Zoghbi, who studied Henry's case, his quiet fight against the disease was incredible and one that will push doctors to pursue more research and treatments.
As for Richard and Mary, they will continue to cherish the bond they created with their son.
"Would I go back and do every second over again with Henry, knowing that there would be this much pain at the end? Yes," Mary wrote. "A million times, yes."
(E! and NBC News are part of the NBCUniversal family)