Céline Dion practices ‘crisis drills’ with her twins amid her battle with rare syndrome

Celine Dion accepting an award with her son
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In a candid new interview with PEOPLE, Céline Dion opened up about how she’s navigating her health struggles while parenting her three sons. The singer is stepping back into the spotlight after announcing she’d been diagnosed with stiff person syndrome (SPS) in 2022, telling the outlet how “helpful” her children are as she learns to live with the rare, incurable neurological disease.

Dion, the youngest of 14 children, told PEOPLE that her late parents, dad Adhémar and mom Thérèse, tried their best to shield their children from the financial struggles they faced. Now 56, Dion reflects on her own parents’ well of love and support as she learns to live with health challenges that are at times debilitating and excruciatingly painful.

“Both [my] parents were extraordinary,” she says. “We were very fortunate… I have been extremely supported and loved. There’s been really, really, really tough times where my dad was working constantly and my mom only had love for us. We were not going to miss food, love, attention, affection, nothing.”

“The strength that I have is definitely because of them,” she shares. “They are still giving me a lot of strength in my life.”

Though she no longer has financial stressors, she never wants her three sons—René-Charles, 23, and 13-year-old twins Eddy and Nelson—to feel any fear, especially after the loss of their dad, Réne Angélil, who died in 2016.

“I [coped] with losing my mom and losing my dad and losing one of my brothers and losing the father of my kids — my husband, my manager — at the same time,” she explains. “I did not want my kids to be scared.”

“[They] will have something to eat tonight and tomorrow, but what if I don’t know what’s going on with me, and what if I die? What if I don’t wake up? They already lost their dad. What are they thinking? Are they scared to ask me? Should I bring it up?” she continues.

“I let them know, okay, you lost your dad, [but] mom has a condition, and it’s different. I’m not going to die. It’s not something that’s going to go away, [but] it’s something that I’m going to learn to live with,” she says after learning of her diagnosis in August 2022.

With the help of her care team, the pop icon wanted to help her twins feel empowered to support her should she face a “crisis” episode, in which she becomes paralyzed and in excruciating pain.

“We started to talk to them about what’s going on,” she says. “They saw a crisis—we explained it, we played it frame by frame. When I make a sound, or when I don’t make a sound, and what can they do because they’re 13 years old. They can help me out even if I don’t communicate verbally because I can’t produce a sound.”

Dion and her physical therapist run through crisis drills with Eddy and Nelson every two or three months. “We have panic buttons in the house and they know how to put me on my side,” she says. “The idea of telling them and showing them, it was not to frighten them. It is for them to know, ‘I’m your mom and it’s my responsibility. You’re old enough to understand I might need your help.’ They’re so amazing because I would say 15 minutes or so every night, they come and they say, ‘Mom,’ and I say, ‘Yes?’

“[They say], ‘It’s just because it’s been a little longer than you usually take when you clean up at night before bedtime. We just want to make sure you’re fine,'” she shares. “This is our lives now: We care for each other, and they’re so helpful.”

René-Charles even accompanied his mom to the 2024 Grammys, which Dion said she was both “happy” and “very, very nervous” about. “What can happen?” she recalls wondering. “The applause… am I going to have a shock by seeing [the audience]? I don’t want anything bad to happen.”

“So my son said, ‘I’m going.’ I enjoyed every moment, and I was so proud of my son asking me every two minutes before I was on stage… ‘Mom, are you okay?’

“He said, ‘I’m going to walk with you, and then I’m going to back up a little bit. I will be behind you. Anytime you need, you just look at me or just even move your hand. I will hold on, and you can hold on to me,’” she adds. “I have everything that I need.”

We’re wishing the singer and her three sons nothing but the best as they navigate these experiences together as a family.