Avi Slutzkin’s eyes turn to steel as his wife, Gabrielle, 25, walks away.
“She’s a strong woman,” he says, admiring her after she leaves their modest west side living room with their two children, Batsheva Leah, 3, and Ephraim, who will turn 2 in June.
He gets a break, he explains. He gets to go work, as a specialty food manager at Metro Market in Mequon.
Gabrielle is always on. Their daughter Batsheva Leah is in constant motion like any 3-year-old, but it’s young Ephraim’s broken heart – doctors don’t understand how he’s still with us – that has compelled his stay-at-home mother to find her strength, even as she talks of not having it.
“It’s just a very overwhelming feeling,” she said in an interview with the Chronicle, noting there’s no “central person” to advise you on what to do when you’re unexpectedly called upon to raise a special needs child, a boy who has grown too slowly, born with a hole in his heart.
Avi, originally from South Africa, met Gabrielle through friends while he was studying at a New Jersey yeshiva. They married in 2011.
It wasn’t too long ago that their problems were more mundane, like when Gabrielle, originally of Michigan, had heard rumors that South Africa was dangerous. She visited for the first time anyway with her new husband, for a family wedding.
Avi never experienced violence growing up in Johannesburg, except for one time when, as a teenager, an intoxicated man wandered into the path of his bicycle. “I didn’t really hit him,” Avi recalls. “I kind of swerved.”
The man grabbed Avi’s handlebars briefly but the 16-year-old was able to ride off to safety.
Contrast that with Gabrielle’s story of a visit to a shopping mall there, where she was startled when a man jumped over a banister with police chasing him. Avi smiles: “I lived there all my life. I never experienced anything like that.”
Today, that old shopping trip for a South African sister-in-law’s wedding shoes might as well be a million miles away, with the couple now more focused on the basics. Gabrielle’s father, west-sider Rabbi Daniel Brenner, recently posted an ad on JewishInMilwaukee.com, referring to “chesed” or loving-kindness:
CHESED OPPORTUNITY – car needed
Special needs infant requires transportation weekly to appointments and procedures. Parents are requesting a donation of a vehicle to serve this continuous need. Not having such is causing this family and others they rely on a great burden.
Avi, 29, takes their one car to work at Metro Market, said Brenner, who is on the road more often than not, working in kosher supervision and chaplaincy.
Brenner said theirs is a joyful Hassidic family, but the experience of raising a special needs child is a daily grind.
“It gets overwhelming. And it takes a lot of support,” Brenner said. “It’s hard to reach out and ask for it.”
Ephraim’s vision is impaired. Most of time he’s continuously feeding, by way of a tube that’s connected to his intestines on one end and to a canvas bag on the other. Where ever Ephraim goes, the canvas bag goes, typically thrown over mom’s or dad’s shoulder, pumping nourishment and now helping him gain weight.
“We plan to wean him off of it, God willing,” Gabrielle said. “Hopefully in the next couple of years.”
At first, doctors didn’t catch it.
The couple had no idea anything was wrong when Ephraim was born on June 22, 2014. After his bris, Gabrielle noticed a cloudiness in the eyes was not going away. Doctors told them it could be baby cataracts.
Then, three or four months later, “he was not doing good weight-wise,” Gabrielle remembers. Ephraim was breast feeding but he wouldn’t take a bottle.
Months later, in February of 2015, when a doctor found Ephraim still hadn’t gained weight at a checkup, the Slutzkins were sent straight to the hospital. This was when Ephraim was finally diagnosed. He was born missing part of a chromosome, a condition called velocardiofacial syndrome. The disease is linked to congenital heart disease, some facial features, feeding difficulties and other issues. Specifically, baby Ephraim had a hole in the wall inside his heart, leading to a mixing of oxygenated and unoxygenated blood.
Open heart surgery helped. He’s now got a bovine patch and conduit in his heart, which will need to be replaced as he grows.
“He’s a miracle baby,” Avi said.
The couple reports that when doctors looked inside Ephraim and found too much stress on the body, with the boy still alive, they were dumbfounded.
“I’ll put it in the words of the anesthesiologist. What he said was that Ephraim has written his own manual,” Avi said. “We have no reference to his extreme condition. He continues to and will continue to defy all of medical literature.”
“They came to us and they said, we looked at his scans over and over and over and over and I’m not exaggerating, they said this like for five minutes, hoping to find some kind of mutated cell that would prevent the amount of blood that was going to his lungs. Normally the lungs cannot handle that pressure and would just shut down and we did not find anything.”
Somehow, Ephraim lived.
Gabrielle doesn’t feel worthy. “I feel like someone more qualified than me should be handling it,” she said. “I’m just so young for this.”
But she is confident God has a plan. “If not for that, it would have been very hard,” she said.
Avi agrees: “We’re teetering on a fine line. Anything can happen. Everything is a divine plan. The divine plan can change in an instant.” That potential for instant change is actually comforting for Avi. Who can say what will happen next?
“I have faith that he’s here for a reason,” said Gabrielle, once more exuding some of that strength that her husband sees in her. “God has plans and I’m going to roll with it.”