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Meet Dee Nguyen at his petite Laguna Hills breakfast restaurant, Break of Dawn, and you find an affable, talented chef who has created a small army of faithful followers. Patrons love his French Toast Crème Brulee and his coffee-infused cinnamon rolls.
Yet while diners pack the house, few know why the restaurant is open barely 20 hours per week. Few know about his second life, as a caregiver to his 17-year-old son.
Running a small breakfast-and-lunch restaurant in an Orange County strip mall was never one of Nguyen’s aspirations. The son of hard-working refugees who fled Vietnam when he was a young boy, Nguyen was expected to become a doctor or a lawyer, but he found his passion in cooking instead — and excelled. After graduating from the California Culinary Academy, Dee took a job as a chef at the Ritz Carlton in Laguna Niguel, California, and rose through the ranks in record time.
He was sure he could work his way up to executive chef in just a few years. He married Linh Hua and within a few months they were expecting their first child. Nguyen was living the life of his dreams.
A routine surgery, a permanent brain injury
He thought he knew about hard work and sacrifice, but he was about to find out how much more he had to learn. His son, Berlin, was born in December of 2001 with Eagle-Barrett Syndrome, a rare disorder that causes major abnormalities in the stomach, bladder and kidneys. In the first few months of his life, Berlin needed multiple life-saving surgeries. Despite his challenges, Berlin was clearly a happy, bright little boy. He began speaking at 9 months old.
When he was 1 ½-years old, Berlin underwent surgery to repair the skin on his belly. What was supposed to be a routine procedure turned tragic, when a doctor in the intensive care unit mishandled the boy’s breathing tube. He was left without oxygen for 15 minutes, and went into a coma from which doctors did not expect him to recover. He eventually did awake, but with a brain injury that rendered him quadriplegic with significant cognitive impairment.
On the one hand, Nguyen had his dream job at the Ritz, one that could only flourish with many hours spent away from home. On the other hand, Dee had his son. By the time Berlin turned 5 in 2006, Dee knew he needed to change his life.
He quit his executive sous chef position at The Ritz to open his own restaurant, one where he could limit his hours. He and Linh named the breakfast spot Break of Dawn, but not for the obvious reason. They thought about the moment they were told that Berlin was "gone," only to have him come back to them. After the darkest night, every break of dawn reminded them of Berlin and the hope of a new beginning.
The new normal
Nguyen and Hua came to terms with what would never be for their son. He would never walk, always have difficulty communicating, and would be dependent on his parents for the rest of his life. What might be a minor thought for most parents is a life-sustaining concern for Berlin’s parents. For example, Berlin’s bladder catheter must be emptied every three to four hours, around the clock. While Nguyen has the task down to a science, even able to do it in the dark at night, he hasn’t slept more than a three-hour stretch in 17 years. Since Berlin can’t feel when his bladder is full, Nguyen constantly monitors how much liquid Berlin takes in and how much must be emptied.
Holly Hellberg, Berlin’s full-time aide in school, sees how devoted Berlin’s parents are to him. “It’s a very humbling feeling to be around them and know how much they have given Berlin and given up in their own life.” And yet, she says, “they don’t ever appear to be frustrated, disappointed, angry, resentful in any way about Berlin’s disabilities. They just love him.”
As Berlin grows, so does the physical toll of his care. Nguyen handles the lifting of Berlin into his wheelchair, shower and bed, which has caused a herniated disk, a near-useless wrist and a painful knee. Nguyen sits with Berlin for hours in the bathroom helping him relieve his bowels, an extremely difficult task for someone with quadriplegia. Hua manages Berlin’s oral hygiene. Many children with conditions similar to Berlin's have multiple cavities and rotting teeth. Not Berlin. His teeth are white, straight, and cavity-free, thanks to Hua’s intensive care.
Hua and Nguyen worked out a plan to alternate their work schedules so one parent can always be with Berlin when he’s not at school. Hua, a pharmacist, works afternoons and evenings so Dee can work at the restaurant from 8 a.m. until 1 p.m., five days a week.
A new dawn
Though he's no longer a chef in a super-fancy restaurant, Nguyen finds ways to be creative. He hosts monthly pop-up dinners with elaborate tasting menus for 50 people. The meals feature around 20 imaginative courses, and focus upon a theme ingredient like fennel or citrus. Nguyen spends weeks wandering through regional farmers' markets and foraging in the woods for local seasonal ingredients. In one pop-up dinner, Nguyen featured persimmons that he picked from a 30-year old tree on a friend’s property. After carefully peeling them, submerging them in salted water and individually hanging the persimmons from the restaurant ceiling, Nguyen hand-massaged them daily for a month to create dried hoshigaki, a Japanese delicacy. Dee employs the same care making his famous duck prosciutto and fermented pinecone syrup.
In the kitchen during these pop-up dinners, Nguyen is hyper-focused over his intricate dishes. As the affairs wind down, he walks the room to exchange high fives with adoring customers. The evenings are a necessary escape. For one night each month, he is again the high-flying chef, creating masterpieces and basking in the spotlight, momentarily putting aside the day-to-day hardships.
Berlin’s life expectancy is unknown, and his parents say they don’t think about how much time he has. They try to enjoy the time they have together.
"They say parents set examples for their children to follow," Nguyen wrote to mark Berlin's 16th birthday. "But in our case, you are the one who teaches us how to live and to love. It has taken me a long time to realize what’s important in life, not money or social status.”
Berlin is always smiling with them, bright-eyed and engaged. “You start to appreciate little things. You appreciate every day,” Nguyen said. “I wake up and think, we are still alive. Berlin is still alive and healthy. You are just thankful.”