"Choose to inhale, don't simply breathe to exist." ~ last statement to Jeni from her son, Mattie, before he left our world.
Jeni, the mother of four children who died from neuromuscular disease, has the adult onset of the same disease. Here is her lemonade story...
"Hello, Michael, it's Jeni Stepanek. How are you?"
"It's great to speak with you today, Jeni. Thank you for taking the time out of your busy schedule to help spread your son's important message of peace. Are you ready to get started?"
I emailed a list of questions to Jeni days in advance for her review and the first one struck a chord with her...
Have you always been good at making lemonade?
Jeni: Not everything that is challenging or a burden is a lemon. Lemons are fruit. I'm not fond of calling something a lemon when it is referring to people. We refer to defective cars as lemons. When we focus on the identity of burdens, when we look at challenges face by people as lemons, we might miss the blessings.
What is the biggest lesson you've learned from the burdens?
Jeni: Hope is real. Hope is not wishful thinking. Mattie taught me hope is real because it begins with an attitude, and an attitude is a choice. Whether our life is burdened or blessed by disability, we are in charge of our own attitude. We don't always choose what happens to us or around us or to those we love, but we can choose the attitude that reflects those truths onto others and into the future. If we are late because of traffic, or there are other tie-ups, our scowling affects others.
I choose how I present myself to the world in spite of what's happening in personal life. That doesn’t mean ignoring or denying my feelings, it is simply about the words and actions I choose to share my feelings. I work hard to keep my attitude anchored in hope. There is potential for things rooted in faith.... that's where lemonade comes from. We don’t just choose hope once and then life is smooth. We need to make the choice for hope again and again, sometimes hundreds of times within each day. It sounds easy, but this may be the hardest choice in the world.
Mattie wrote a poem the day America was attacked. Can you share how this came to be?
Jeni: Mattie wrote three poems on 9/11. The first one, "Attack on America" was just sixteen words, a statement of shock. Both of us had friends in the both the World Trade Center and the Pentagon. Mattie had just come home after spending six months in an open ward I.C.U. where he was in a shared room with sixteen children in crisis. He witnessed trauma, and sometimes death, on a regular basis. He was ten and eleven years old at the time. When he got out of the hospital, he attended an annual fundraising event with hundreds of firefighters from all over the U.S. and Canada who had become close friends across the years. He knew some of those same firefighters were in the WTC buildings that were destroyed. He watched his friends’ lives go up in ash.
Also, we live near Andrews Air Force Base, and we suddenly heard fighter jets scrambling, so we knew another plane was headed for D.C., before it made the news. I feared for our country’s future, and even for our own future in those moments. I wondered, is this an air battle or will bombs be dropped? Should we leave our home? Do we have enough portable oxygen tanks?
I was stunned. I was immensely sad. And I was concerned for our future. By mid-day, Mattie wrote a second poem expressing anger and concern, and questioning how we go on from something like this. The phone lines were jammed, we couldn’t reach our friends in New York or the Pentagon, and we both watched the news without speaking. I kept thinking, how can I help my son. His whole life has been about loss.
Mattie and I remained silent throughout most of the day. We both knew General Richard Myers and others at the Pentagon. We both knew firefighters who were surely in the World Trade Centers when they collapsed. By late night, we curled up together on the couch, knowing sleep would eventually overcome us despite the shock and concern. We knew we needed to pray, as we prayed together every night. I told Mattie I wasn’t even sure where to begin, or what to pray for in the moment. Mattie said we needed to pray that every fleck of ash become mortar for rebuilding the mosaic of life, rather than fueling cries of vengeance. I asked him how we even begin such a journey, and he responded, we need to stop. Just stop... and proceeded to type his third entry of the day in his computer journal. He titled it “For Our World.” Without pausing, the words flowed. Mattie didn't label his words a poem or prayer. He wanted his message to be recognized as an international passage for peace. “Not everyone likes poems or prayers,” he said, however, “Everybody looks for answers. A passage is a written statement, but it is also a route, a direction that can offer guidance."
We talked about this statement the next day, when he began sending “For Our World” out by e-mail. “Peace is not about revenge, or getting our way or what we think we are owed. I don't like terrorists,” he said. “But it's not my job to judge. My job is to be responsible for my choices, and to make good choices that help peace grow. We can't say, 'I want peace BUT.' We need to make peace our attitude, our habit, our reality. Peace has to grow for working together with other people, even people we don’t like or disagree with. Peace is rooted in balancing basic needs. We can disagree and still have peace, a just peace...one person at a time.”
How did Mattie get this inspiration for this passage?
Jeni: Beginning when he was a preschooler, Mattie said God placed messages in his heart, and that his purpose in life was to shape those messages with words and share them with others so that they, too, could hear and understand. Mattie said he heard a voice in his heart. Not voices like speech that we hear with our ears, but a voice in his heart. I was amazed, and also, concerned. Mattie just seemed to ‘know God.’ I grew to know God, but Mattie just seemed to know God as a friend. Some people talk about whether they ‘believe in God, That was never an issue with Mattie; he simply believed God, and shared the messages from his heart. Those messages included realizations like life is worthy. That God does not cause suffering, or choose who to burden or who will be the recipients of hardship... these are things that happen in life. God’s plan is for us to know Him, and to understand that He is with us during the good times, and also during the suffering. We are not alone. Mattie also said that God looks at the potential in all of us, even in the worst moments of human-made tragedy. God always sees the potential for good to grow from a person, or from a situation. That is why we must carefully choose how we move forward in life.
At the end of the day, Mattie concluded this act of terrorism, while tragic and irreversible, has the potential for good to grow from it. That is the root of Mattie’s vision for peace being about rebuilding the mosaic of life, because life is worthy.
The tenth anniversary of 9/11 is coming up. What are your thoughts?
Jeni: The events of 9/11 shifted how Mattie looked at the world. There are countries where terrorist attacks are a sad but daily reality. After witnessing and feeling the tragic truths of 9/11 in our own communities, how can our eyes and minds and hearts not be opened to those citizens of our world who are starving because we have not equitably distributed resources? Opened to countries where treatable diseases are rampant because there's no access to affordable healthcare, or to a sterile bandage? To the reality that civil and human rights are still being ignored because of class or creed or color of skin?
Mattie saw the human connection on that tragic day. He celebrated that citizens came together, in prayer and in silence, and in a commitment to peace, at least during the first months following the tragedy. So here we are ten years later – what now, what next? I would like your blog readers to visit mattieonline.com and find something that speaks to them. I encourage people to read Mattie’s “For Our World” poem which is now posted in dozens of languages.
Read and say 'wow. What can I do to choose peace, to share peace, and to rebuild the mosaic?' Download and post For Our World. This is the glass of lemonade I offer your readers to drink.
