Family thankful for hospice services (video)
Sept. 25, 2013 at 4:25 a.m.
Updated Sept. 26, 2013 at 4:26 a.m.
Stephen Shifferly stares intently at a red toy car.
And that's how his mother, Amelia Forman, knows.
She dangles the cherished belonging in front of him, and he raises a thin arm. His fingers graze the black wheels, but don't grip them.
He needs to stare at the toy because he cannot tell Forman which one he wants; he cannot talk.
A subtle smile plays on his face as a percussion vest hums against him. The vest rapidly inflates and deflates with air, which breaks up mucus building in his chest.
His family fastens the vest to him twice a day, every day, because he cannot cough and it loosens his stiff muscles.
Doctors diagnosed Stephen with an unspecified type of leukodystrophy three months before his second birthday.
Leukodystrophies are rare, inherited diseases that affect the brain's white matter. Stephen's white matter is vanishing, which means he is losing control of his motor skills.
There is no cure, and most of those afflicted with it die young, his mother said.
"The same day I pulled him out of school was the same day I enrolled him in (Hospice of South Texas)," Forman said. "That was pretty difficult."
Physically, 4-year-old Stephen is about the same age as his 5-month-old stepbrother Keegan, who bounces and nibbles on a blanket nearby.
Stephen used to yank books off shelves, and Forman does not recall the exact moment his lips stopped moving.
His last words could have been "ow" when he was poked at a doctor's office or he could have said "mom."
"You never think, 'This is going to be his last thing he ever says,'" Forman said. "I never wrote it down. If I would have known, I would have probably recorded it on my phone."
She doesn't spend much time dwelling on it, though. Instead, she celebrates his new milestones, such as reacting well to a complicated mix of medicine or blinking slowly to express his disdain or pleasure with something. He still surprises.
"I think I quit keeping track of all the things he quit doing because it was too hard to think about," she said, "So now we've come up with new things he does."
In July, the family toured SeaWorld in San Antonio courtesy of a hospice grant. Stephen "made out like a bandit," Forman said, with stuffed animals galore.
"He liked the snake the best. That was probably his favorite, but the snake wrapped itself around Stephen's wheelchair like it would a tree, and I was kind of like 'No, we are not taking that one home,'" Forman said, chuckling.
In many ways, Hospice of South Texas elevates his quality of life and aggressively treats any illness his body can't fight off. The experience is very different from what Forman originally thought it would be, as nurses visit at least three times a week, lending advice or a shoulder to cry on.
"He doesn't have an expiration date, and he doesn't need one," Forman said. "I feel so relieved to have them in my corner and to have them literally a phone call or text message away."
But it might be better if they could also go to hospice when complications arise, she said.
Six months ago, Forman, 32, of Victoria, did not know whether Stephen's breathing, which grew more and more erratic, was a sign of pneumonia or strep throat, so he was admitted into a local hospital, a "petri dish for infection."
"He can't regulate his own body temperature," she said.
An inpatient facility is ideal because it would be cleaner, she said.
Hospice of South Texas is raising about $6.5 million for a five-phase project that would include an inpatient center, memorial gardens, a bereavement center and an endowment.
Hospice of South Texas' first phase of the project, a 12-bed, private room, 20,000-square-feet inpatient center, will hopefully be built on 30 acres on Mallette Drive by 2014, said Hilary Lucas, the organization's advancement director.
"Already we've reached 79 percent of our ($5.25 million) goal," Lucas said on Sept. 13, "but we still need more. We still have a ways to go."
Forman hopes people open their wallets.
"I would love to volunteer there. I would greet people at the door, whatever. I mean, that's how indebted I am to them," Forman said. "I'm hoping that it happens in (Stephen's) lifetime."