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| June 21, 2016
For the moment it’s quiet inside the small apartment in Avon that David Hester and his son Sharieff recently moved into together. It’s 10 a.m. on a clear, blue June day, and Sharieff, 21, is still sleeping. As his father tries to describe what a typical day is like for the two of them, he begins with this simple statement: “I always let him take his time.” And then he starts to sob.
Time. It’s the word that defines both of their lives these days. The amount of time it takes the father to help the son get off his ventilator in the morning. How long it takes the son to shower and dress. How long it takes the father to drive to Boston Children’s Hospital, where Sharieff has been a patient and almost a celebrity since birth. And, finally, the amount of time it takes for father and son to share at least one laugh every morning.
“I let him know how much I love him, and I always try to say something humorous or funny, so he can start off his day with something positive,” Hester says. To which Sharieff replies, “That’s really important for me. It makes me feel good. We joke around. We talk. It helps me get through the day.”
Any parent who’s cared for a sick child, whether they have a fever, a broken arm, cancer, or the rare congenital joint condition Sharieff battles, knows how all-consuming it can be for an hour, a day, or a lifetime. Nothing else seems to matter besides making them comfortable.
While a sick child needs a parent, the other side of that relationship is often overlooked. The parent relies on a sick child to help keep life in perspective, to remind them of what matters. It’s not work. Not money. Not a car or a house or Facebook, an Xbox or iPad.
Since the day Hester became Sharieff’s full-time caregiver more than 15 years ago while living in a one-room apartment in New Bedford, theirs has been a bond built on mutual trust and love, each helping the other get through their respective days. Sharieff’s infectious smile and relentless optimism, despite his obstacles, prevents Hester from ever sinking too low. Hester’s round-the-clock attention and nurturing touch, like the simple act of zipping his son’s coat, remind Sharieff he’s not alone.
Sharieff suffers from several rare conditions, most notably arthrogryposis, which leaves his joints stiff and his muscles abnormally developed; and Klippel-Feil syndrome, a birth defect that impacts his neck vertebrae and makes breathing difficult. He also suffers from restrictive lung disease and pulmonary hypertension. It all adds up to a life where no task is routine, and even sleeping is stressful.
“There are so many aspects of Sharieff’s care that go on around the clock, like his medical care, personal care, technological care,” said Dr. Mary Mullen, a cardiologist at Boston Children’s Hospital. “And there is emotional support for Sharieff. The dad has really made this something where he’s not just responsible for Sharieff’s success, he is a part of his success.” She added that Sharieff’s story “reflects a family’s and a hospital’s commitment to lifelong medical care.”
It’s not the life Hester saw for himself growing up in the South End, Roxbury, and Dorchester, one of 11 children raised by their mother and stepfather after Hester’s father left the family when he was three. He was a good student at Jeremiah Burke High School at the height of the Boston busing crisis, playing basketball and studying Watergate as it was unfolding in the early 1970s. After graduating, he aspired to be an architect, but he landed instead in building construction as a member of Carpenters Local Union 33. That was his life, his foundation, until his marriage ended and he became Sharieff’s sole caregiver.
Nurses told him to prepare himself, that everything else in his life would have to come second behind his son.
He told his union to lay him off, the first in a string of difficult decisions. He admits he was blasé at first and thought he would only miss work for a short period. He was working on a project in Boston at the World Trade Center at the time, and has been out of full-time work ever since. “I always took pride in working, never depending on anything,” Hester said. “But I try not to complain because Sharieff doesn’t complain about anything.”
A turning point, he said, was when he asked God to show him how to not be angry, and to teach him how to properly care for his child.
“He has so many obstacles he has to deal with,” Hester, now 59, said. He said he took strength early on from knowing that Sharieff needs full-time care and that he would be the provider of it. “That helped me get through that moment.” And, as he would learn, every moment afterward.
As Sharieff matured, his schoolwork never suffered despite his ailments. He had perfect attendance at New Bedford High School and did well academically.
“He was in a sheltered classroom, but the typical students incorporated Sharieff into their daily life,” said Kathleen Walsh, a school nurse at the time for New Bedford High. “They learned so much about life from Sharieff. The school was very gracious to him.” Walsh said he would sit with the other kids at lunch and often flirt with the girls (“He had a soft spot for Latino women,” Walsh joked), and that the football players and coaches welcomed him to their circle.
It wasn’t an easy time for the son, or the father. Even though Sharieff’s bus in the morning might not come until 7:30, Hester was usually up by 5 a.m., getting himself ready first so that he could get his son ready for the day.
It took awhile, Hester said, for him to accept that it was okay to depend on others for help, to accept welfare, to lean on the doctors, nurses, and other professionals who made sure both father and son had what they needed. Learning how to put the tracheostomy tube into Sharieff to help him breathe allowed him to embrace “the severity of what I was dealing with.”
Along the way, the maze of paperwork, the insurance hassles, and the medical jargon that left him dizzy started to become clearer and easier to manage. As he begins to list those who helped him through the toughest times, one name reminds him of another, and another, and he can’t seem to stop, like the Academy Award winner who finally gets nudged off the stage by music. Sharieff’s Boston Children’s physicians—pulmonologist Dr. Martha Fishman, cardiologist Dr. Mullen, orthopedic surgeon Dr. Lawrence Karlin, otolaryngologist Dr. David Roberson, along with Cecilia Matos from the hospital’s family services division—boosted Hester’s confidence that he, and Sharieff, would make it.
Hester doesn’t try anymore to hide his emotions. When he recalls the three occasions when Sharieff nearly died, including once in 2003 when his tracheostomy tube came loose, the tears come back.
By leaning on each other, both father and son have managed to thrive, in their own ways. “He was loved, no matter what,” Hester said, his voice cracking again. “That’s all I wanted to be sure of.”
That love has helped his son not just emotionally, but also physically.
“He’s doing really very well,” Mullen says of Sharieff. “He is a ray of sunshine. He’s a person who exudes happiness and brings a great sense of optimism to the people around him. That’s a part of what the father has instilled in him.”
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