I am no Hero worshiper, when I was eighteen I saw a beautiful Rolls Royce parked on fifty third St. While admiring the beautiful red and black interior design, the owner approached his car. I immediately recognized him, showers him with praise and asked him for his autograph. The Oxymoron looked at me like I did not exist, the same fool who used to buy tickets to watch him play Basketball, so he could afford the Rolls. Another time on the same Street, my all-time favorite Movie Star struggling with a big Box up the stairs to her Townhouse. I asked her if I could help her, I also asked for her Autograph, she looked at me as If I was going to Rob and Rape her, she didn’t utter a word, no thanks, get away from me, just a look of disdain. I guess I would not be invited to Dinner. Well that was it for my Hero worshiping for the rest of my life. As far as genuine Heroes who steps up in the most adverse of situations and risk their own Lives to save others, GOD BLESS. Then there are People who life has been un giving and un timing. Yet they devote the little time given them, to share an un Dimmable light of Hope and Resilience.
Mattie Stepanek has touched my Soul.
‘Mattie’s message touched the world’: The story of a boy poet
In his brief life Mattie Stepanek befriended Oprah Winfrey and former US President Jimmy Carter, and his poetry spoke to millions of ordinary people. His mother Jeni talks to Catherine O’Brien about her extraordinary son whose life was cut short by a rare form of muscular dystrophy
Mattie and his mother Jeni at his first book signing in 2001
Jeni Stepanek’s home is an attractive four-bedroomed house with a white picket fence. Had it been a dilapidated, one-roomed shack, however, Jeni would still have bought it. The only factor that mattered when she moved in four years ago was its location – opposite the entrance to the 26-acre park in Rockville, near Washington DC, created in honour of her son Mattie.
The park has play spaces, but at its heart is a memorial peace garden with a life-size bronze statue of Mattie and his dog Micah. ‘Every day, I sit at my window and see mothers go over to the statue with their children,’ says Jeni. ‘If they press a button on the speaker post, they hear a recording of Mattie’s voice. 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. The first three, Katie, Stevie and Jamie, died before the age of four. Mattie survived until three weeks before his 14th birthday and in that brief lifespan became an international phenomenon, selling more than two million copies of his poetry collections and giving inspirational speeches to thousands of followers. 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. Six years after her youngest child’s death, Jeni works tirelessly in his name, overseeing fundraising for medical research into neuromuscular diseases, teenage mentoring programmes and peace projects in 18 countries, including the UK. She does all this despite having the adult onset of the disease that developed when Mattie was two years old; today her health has deteriorated to the point where she is wheelchair-bound and permanently attached to a ventilator.
‘I am not paralyzed. I can move every part of my body – but I do not have the strength to move against gravity. I can bring my hands together, but I cannot clap. I can raise my hand to my mouth, but I have a difficult time feeding myself,’ she explains.
Mattie with his dog Micah, 2002
In the year after Mattie died, part of Jeni’s catharsis was to write about his short but significant life. ‘I hesitated,’ she says, ‘because I didn’t want my grief to spill over on the page and nor did I want people to think I was hanging on to Mattie’s coat tails. 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. But it is also the story of a mother and son who were living in the shadow of grief. ‘Mattie was not my therapist or confidant – that was not our relationship. But we were incredibly close,’ she says. She describes them as a ‘dynamic duo’ and throughout there is a sense that it was she and Mattie against the world – not least because there is almost no mention of Mattie’s father, from whom Jeni separated in 1997. Mattie once told the American TV chat-show host Larry King: ‘We’re divorced from my father because he did some mean and scary things to us.’ Today, Jeni says, ‘I prefer not to talk about it, but I think my silence speaks volumes.’
Now 51, Jeni grew up in Maryland, where she still lives, in Rockville. She is as reticent about her own family background as she is about her husband. ‘It’s sad, but it is not the story I am telling.’ She does explain, however, that she was training to be a clinical child psychologist when she married aged 25 and became pregnant with her first child Katie, who was born four weeks prematurely, in 1985. Katie came out not breathing, was rushed straight into special care and ‘it was my sudden immersion into the next 20 years of my life’. Although Katie did eventually walk and talk, she couldn’t breathe normally and was fitted with a tracheostomy tube connected to a ventilator. She died suddenly at 20 months when her kidneys and bladder stopped functioning. Her condition was never diagnosed – doctors told Jeni she was a ‘fluke of nature’ and assured her that it was safe for her to have more children.
I give my mommy ‘Buried treasure’ Just like the little boy in Peter Pan. But I can’t give my mommy ‘Buried Jamie’. He is in the Heaven That is the hole in the ground, Like a treasure
Written by Mattie when he was four
Her second child Stevie seemed fine when he was born, just two months after Katie died. But within three days his heart rate was falling rapidly, and by the time he was three months he was permanently attached to a ventilator. He died at six months when one of his oxygen tanks malfunctioned, leaving him without air.
After Stevie’s death, Jeni underwent genetic and emotional counselling. Doctors couldn’t identify what had killed her babies, but realised it was caused by a recessive gene, which, in theory, should mean that there was only a one-in-four chance of giving birth to a child with the then unnamed condition. She and her husband decided to risk another pregnancy and Jamie was born in February 1989, tragically with the same health problems. ‘At one minute after birth I had a bouncing baby boy,’ Jeni recalls. ‘At five minutes, I had a floppy newborn.’
She resolved firmly to have no more children, only to find herself pregnant again within the year. She considered abortion but, as a devout Catholic, couldn’t go through with it. Mattie was born in July 1990. 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. Only then was the rare and poorly understood genetic mutation that she had passed on to her children identified. Dysautonomic mitochondrial myopathy affects the autonomic nervous system, which means automatic functions, such as digestion and body temperature, can suddenly go haywire and, at any time, the body might simply fail to breathe. The exact mutation was so rare that Jeni and her children are the only ones in the world who have been identified with it. 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’.
Jamie survived until three and a half before passing away peacefully in his sleep. Mattie was two when Jamie died, and a school psychologist suggested to Jeni that she put away Jamie’s belongings so that Mattie could ‘forget and grow up without the memory’. It was the worst possible advice. Within two months, Jeni recalls, ‘my loving child was banging his head against the wall, screaming and tearing pages out of books’. To help assuage his anger, she took out a pen and paper with him and wrote ‘The Story of a Very Special Brother’. They talked about Jamie and what it was like to feel sad after he died. Jeni collected Mattie’s thoughts and pasted them into a book, ‘and those were his beginnings as a writer as he learned about the value of getting onto the page what was in his heart’.
Let this truly be The celebration of A New Year… Let us remember The past, yet Not dwell in it. Let us fully use The present, yet Not waste it. Let us live for The future, yet Not count on it
Written by Mattie, aged 11
On a superficial level, Mattie was like every other little boy who loves playing with Lego and dinosaurs. But he was also a profound thinker who rapidly developed a powerful way with words. From the age of four, he was composing poetry; by six, he had won his first poetry competition. He called his poems ‘Heart Songs’ – a term he coined to describe his passion for peace that he wanted to pass on to others. By the age of nine he had bound his Heart Songs into five home-made volumes.
Mattie’s poems illustrate his optimism but they also reveal that he was often in a vulnerable place. His brother had died, his father had gone and his mother was in a wheelchair like him. At the mainstream school he attended he found himself, like many disabled children, in the isolated position of being everybody’s pal and nobody’s friend. His friends’ mothers were too nervous about his medical needs to have him over for playdates and he was often the one child not invited to parties.
Jeni was experiencing similar isolation for different reasons. ‘It’s lonely being the mother of dying children,’ she explains. ‘You can’t share normal milestones with other mothers. People either want to solve the problem, which they can’t, or they want to leave when the situation becomes too difficult. Watching children die is hard.’
Mattie meeting the Harry Potter actors on the set of Oprah in 2001
At ten, Mattie was admitted to hospital with acute breathing problems. He went into a coma, almost died and spent three months in intensive care. When he finally made a tentative recovery in the summer of 2001, a doctor suggested that they spoke to a make-a-wish charity about providing Mattie with a much-deserved morale boost. Mattie’s wishes didn’t fall into the conventional realms of meeting a celebrity or a day at a theme park. He had three specific wishes – he wanted to publish at least one volume of his poetry to spread his message of hope; he wanted to talk to Jimmy Carter, whom he had admired as a peacemaker since writing an essay about him several years earlier; and he wanted to share his Heart Songs on Oprah Winfrey’s television show.
The doctor spoke to the hospital’s public relations department. A few days later, a PR rep came on to the ward and said that staff needed to get a phone to Mattie’s bedside immediately, because Jimmy Carter was going to be calling in ten minutes. ‘Mattie could not believe one of his three wishes was going to be granted,’ recalls Jeni. Carter had anticipated the typical ‘What was it like to be president?’ questions. Instead, he found himself debating the challenges of world peace with a highly intelligent 11-year-old.
The granting of wishes two and three followed. A local publisher was shown Mattie’s poetry and signed him up for his first book contract. Then, shortly after Mattie was discharged from hospital, Oprah invited him to be a guest on her show. Her team arranged for him to be flown to Chicago by air ambulance and booked into a hotel suite. ‘We had never known luxury like it,’ says Jeni.
Mattie’s appearance on Oprah took place weeks after 9/11. He read his poems, spoke to millions of viewers about his own near-death experience, and described the beauty of the heaven he’d glimpsed as ‘beyond imagination’. ‘The world was hungry for a message of hope in those weeks, and Mattie supplied it,’ Jeni explains.
The moment the interview aired, Mattie found himself projected onto the world stage. In the ensuing months he gave scores of television and newspaper interviews and met another of his heroines, Maya Angelou, who offered to write the foreword for his next book. Bill Clinton and J K Rowling were among those who corresponded with him. Oprah bought him a van specially adapted and equipped for Mattie and Jeni’s medical needs, so that they could tour America giving speeches and attending media events. ‘Spending as many as 12 hours a day in the van brought us even closer,’ says Jeni. ‘We would play silly games, tell jokes, and talk and talk. Mattie was never anything but my little boy, and I was never anything but his mum. But we were able to relate beyond that because we both knew how fragile existence is.’
A champion is… Someone who overcomes challenges Even when it requires creative solutions. A champion is an optimist, A hopeful spirit… Someone who plays the game, Even when the game is called life… Especially when the game is called life
When Mattie turned 13, Jeni noticed a young man’s face emerging and his fair hair becoming darker. ‘But when I gave him a hug he was so thin. He was growing up and dying simultaneously.’
Early in 2004, Mattie’s health went into sharp decline. He died in hospital in June that year with Jeni lying alongside him to feel his final heartbeat. Local television stations interrupted programming to announce his death. At his funeral the following week, thousands lined the streets.
Then Jeni went home with her close friend Sandy, who has been her lifeline for the past 20 years. Jeni regards Sandy as her unofficial ‘sister’ and Sandy’s children regard Jeni as family. For a long time they were neighbours; now they share the house that overlooks Mattie’s memorial park.
It is impossible to fully contemplate the sorrow Jeni experiences as a mother without her cherished children. ‘I don’t think I ever felt anger. And I don’t think that I ever said, “Why me?”’ she says. ‘I did, however, say I can’t go on. I have been as far into the abyss as it is possible to go.’
Oprah Winfrey admires the bronze statue of Mattie in the Maryland park named in his honour, 2008
She remembers the second year after Mattie died as being particularly hard. ‘After the first year, the rest of the world moves on – and all the while you are getting more and more distant from your child and feeling lonelier and lonelier.’
Her own health has deteriorated significantly. She went on to a full-time ventilator three years ago and her fading vision means that she can no longer drive. But she remains stridently independent. The key thing, she says, is to have a reason for getting out of bed, and every day she wakes up with the resolute purpose of continuing Mattie’s legacy. Mattie’s Heartsongs are now part of school curricula, scholarships are given in his name and a school in South Africa has been named after him. An annual Heartsongs Gala in Washington has raised millions of dollars, while further funding has gone into children’s hospices.
In truth, Jeni concedes, there was nothing particularly original about Mattie’s message. ‘It was simply, “Live your best life, be your best self, give what you wish to receive.”’ But it was the way he delivered it that struck such a chord.
‘His attitude was that you can’t change what life throws at you, but you can choose how you deal with it – and if you choose right, you will make a difference. Whenever I am feeling miserable I remember that and it gives me the inspiration I need to face the day.’
Messenger: The Inspiring Story of Mattie J T Stepanek and Heartsongs by Jeni Stepanek is published by Hay House, price £9.99. To order a copy for £8.49, with free p&p, contact the YOU Bookshop on 0845 155 0711, you-bookshop.co.uk
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