Rules for dating a poet
His heroes – Oprah Winfrey, poet Maya Angelou, former US president Jimmy Carter – became his best friends.
At his funeral Carter gave the eulogy, declaring, ‘My wife and I have known kings and queens, and we’ve known presidents and prime ministers, but the most extraordinary person whom I have ever known is Mattie Stepanek.’You do not have to spend long with Jeni to understand where Mattie got some of those extraordinary qualities.
But I knew in the end I would tell the story – because I was the only one who lived it with him.’Jeni’s now published book Messenger is a celebration of Mattie’s remarkable achievements and wisdom that was way beyond his years.
The good news, doctors told her, was that they now had a medical explanation, ‘and the bad news was that all my children were going to die young’.It is a terrible thing for a parent to bury a child, but I do have the blessing of seeing how Mattie has touched the world.’Jeni is a mother who has endured more grief that most of us could bear to imagine.All four of her children were born with a genetic disorder – a rare form of muscular dystrophy.She considered abortion but, as a devout Catholic, couldn’t go through with it. Jeni ignored medical professionals who suggested she put him in an institution, and consequently for almost two years lived on the edge of exhaustion, juggling long stays in hospital with either or both of her surviving sons.In 1992 a doctor looked at Jeni’s drooping eyelids and, suspecting that they were a symptom of neuromuscular disorder, suggested she underwent testing of her own.