Jeni Stepanek is 57. But she recently decided to celebrate her “83rd” birthday.
The birthday party was a part of Jeni’s bucket list, which she created due to a rare form of muscular dystrophy that has left her confined to a wheelchair and dependent on an oxygen tank. Yet, Jeni’s life and legacy have since stretched longer than anybody thought possible.
If her name sounds familiar, it’s because Jeni’s son Mattie, who suffered from the same disease, was something of a celebrity before he died in 2004 at age 13. Though young, Mattie was a talented poet, thoughtful philosopher, peacemaker ― and one of Oprah’s greatest spiritual teachers.
“Mattie was one of the most authentic, loving souls I’ve ever known,” Oprah said. “His spirit will always abide in me.”
Mattie touched countless lives with his best-selling books and message of peace. His mother fostered and encouraged his gift ― even as she battled dysautonomic mitochondrial myopathy herself. The disease also claimed the lives of all four of Jeni’s children, to whom she unknowingly passed the genes. Jeni was diagnosed with the adult-onset version of the disease in 1992; her two oldest children had already died, and her third would die later that year. Mattie was 2 at the time.
Coping with the deaths of her children and declining health has been harrowing. Then, in 2015, Jeni received another devastating diagnosis: cancer. She faced this hardship as she has faced so much else, with grace and strength. And she recently celebrated the miracle of another birthday.
Surrounded by family and friends who came to honor her, Jeni attended her “83rd” birthday party. Like Mattie, the way Jeni lives her life has been an inspiration to many.
“She’s the most amazing, strong, powerful, willful woman I’ve ever known, read or heard about,” Oprah said.
Oprah dropped in on the party to surprise Jeni, who appeared both stunned and thrilled to see her. When the two got together to talk, Jeni opened up about what helped her stay strong in the face of so much adversity.
“God gave me a purpose on earth, and I live celebrating that purpose,” Jeni said. “I am a strong person, spiritually... No matter how sick I am, no matter how ill, how much pain I’m in, I wake up every morning with just, ‘Wow. Thank you. I’m alive.’”
'One day, we will all die. But on all the other days, we will not.' And so, today, let’s toast and celebrate to all those other days, with gratitude. Jeni Stepanek, paraphrasing author Per Olov Enquist
When the difficulties feel like too much to bear, Jeni added, she looks to her loved ones for their support. “Sometimes when I can’t come up with a good enough reason to take that next breath, I let somebody else give me a reason,” she said.
One of those people, oftentimes, is her late son Mattie.
“Before he died, he challenged me: ‘Choose to inhale. Do not lay down in the ashes of my life. Do not simply breathe to exist. Choose to inhale,’” Jeni said. “I draw strength from that. I choose to inhale. I don’t just survive; I thrive.”
Jeni also honors Mattie’s memory by committing to fulfill his peaceful purpose through the Mattie J.T. Stepanek Foundation. At her party, Jeni shared her own message of love, light and gratitude, with some help from the author Per Olov Enquist.
“Because this began as a bucket list, which is something you do when you’re faced with some overwhelming odds of surviving, I want to leave you with this thought,” Jeni said. “’One day, we will all die. But on all the other days, we will not.’ And so, today, let’s toast and celebrate to all those other days, with gratitude. We are family. We are an amazing mosaic. Party on.”
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