Activists » Remembering Mattie: Jeni Stepanek

 

Do you remember the first time you ‘met’ Mattie Stepanek? I do.  It was 2001, I was 20 years old and watching The Oprah Winfrey Show.  I recall sitting in front of the TV mesmerized by this 11 year old boy that spoke with a spirit so wise, so peaceful, it was unlike any other I had ever experienced.   That day, like many before and many to follow, Mattie was sharing a message of hope and peace – his heart song, his reason for being.  I can still feel the impact of hearing his message that day.

Mattie was born with a rare form of muscular dystrophy and to get around, he needed a wheelchair and oxygen.  But, that never stopped this earth-angel from soaring!  By the age of 3, Mattie was writing poetry, and in 2001, he realized one of his greatest dreams when he became a published author.  His books Heartsongs and Journey through Heartsongs, amongst others, have become international best-sellers.  Mattie’s mission?  To spread his message of hope and peace to the world through his talents, poetry and public speaking.

One person was by Mattie’s side every step of his incredible journey, inspiring him, loving him and simply being his mom – Jeni.  Jeni has the adult version of muscular dystrophy, which she unknowingly passed on to all of her 4 children.  “When I was diagnosed with the adult version of muscular dystrophy, which is more muscle impairment, they went back and checked the children. Two of them had already died, but Mattie and his brother Jamie were still alive. They were diagnosed with the infant-onset [version], which is neurologically devastating and always—except for in [Mattie's] case—fatal during early childhood.”  Eventually, Jeni’s heart would be put to the ultimate test through the loss of her children, Katie died at 2 years old; her son Stevie at 6 months; and her son Jamie at 4 years old.   In 2004, Mattie was taken back home to Heaven, he was 13 years old.  Mattie gave the world every ounce of his spirit, and we are all better for it.

It was my great privilege to speak with Jeni - a woman of great resiliency, hope and faith – about her journey with, and without, Mattie and how she carries on his legacy of peace.

 

“If you have enough breath to complain about anything, you have more than enough reason to give thanks about something.”   Mattie

 

 

 

Jeni on Carrying the Torch of Peace

Mattie’s legacy is a lot to carry, but no one is expecting it from me.  These are self-imposed expectations – no one expects me to be Mattie.  I have taken it upon myself to further Mattie’s message and mission [through my work at The Mattie J.T. Stepanek Foundation] because I believe in it so powerfully.  I learned so much from my son.  I embrace and choose the expectation on my own.

 

Jeni on The Making of a Peace-Maker

I was a motivational/inspirational speaker before my son, also with a message of hope and peace, but directed at families and professionals who work with children who have disabilities, who are dying or have died.  As a parent, I took my personal story of loss and turned it not into a negative situation, but into a story of hope.  So the way Mattie found his voice, was through my message.  How he became a public speaker was…CLICK BELOW to listen to Jeni tell you how Mattie got his start, at 6 years old, in public speaking…Click HERE to listen to Jeni [approximately 4:30 minutes]

 

Jeni on her life B.C. and A.D. – before children and after disabilities

In the 1980’s I was busy working on a doctoral degree, getting married and planning to have healthy children.  I was running 5 miles a day and water-skiing for fun.  I was active in my church and community and when I got pregnant with my first child I was going to live an extraordinary normal life.  When I was in my 20’s, I figured all of my children would be happy and healthy and I would build my family.  Then when you have children with severe disabilities and they’re dying…  Losing a child is an earthquake in your life and the tsunami is the tears that follow.  You don’t rebuild from that point, you start all over again.  You can’t rebuild, your child is gone.  Mattie talked about life as a mosaic, it resonated so deeply with me because your life will never come together exactly as it was, you cannot rebuild it as it was, you have to rebuild it as it is – and how it is can be just as beautiful.  A mosaic includes broken pieces, as well as bright new pieces.

When Mattie died, I did not envision a future.  As long as I had one child, my vision board included being a mommy, so I kept going.  What choice do you have?  You can’t lie down in the ashes of one child’s life when you have another still here and needing love, attention and celebration.  When that youngest child dies, I had a hard time envisioning the future.  What happened was, other people envisioned it for me.  And somehow, I was able to allow them to do that.  On the days that I could not come up with a good enough reason to get out of bed, I allowed someone else to come up with that reason.

When something miserable happens, you have the right to feel miserable but then you have a choice to go down the abyss to self-pity or to choose an attitude of hope that energizes you and moves you into each next moment.  That is the choice people have to make, it’s not easy, but it is worth it.

 

Jeni on the 10^th Anniversary of September 11^th

Ten years later can be as painful as the moment; wounds scar over but even scars are sensitive.  Sometimes the ordinary days are more painful than anniversary days because on anniversary days everybody will pause and think about that day and memorialize it in their own way.  But then September 12^th comes along and now what?  That is what my message is about, taking pain and turning it into something better.

What happened on 9/11 is tragic and horrific.  It should never happen again, to anyone.  What we must do is move through the devastating moment – losing a child, a parent, a spouse, natural disaster, terrorism – and say “What is the potential?  What can I do to make a difference?” September 11^th does not end this Sunday, the effects of that day will ripple out for hundreds of years.  People need to take the energy of September 11^th and decide to do something better, to choose peace.

Don’t thirst for revenge.  Whether we agree or disagree with our neighbor, whether we like or dislike our neighbor, whether we pray similarly or differently than our neighbor, we live in a mosaic of humanity with our neighbor – we are one earth.  We have to work together.  Peace is NOT about agreeing with people, peace is about existing in harmony with people.

The “For Our World Campaign,” through The Mattie J.T. Stepanek Foundation is dedicated this choice.  On September 11, Mattie watched personal friends perish during terrorist attacks. “For Our World” is the poem he penned that day as his response to universal questions of “What now? What next?” He hoped that one day, these words would serve as an international passage for peace.   [Read For Our World HERE]

 

Jeni on Making the CHOICE for Peace

Mattie said there are three choices to having peace.  He deliberately used the word ‘choices’ not ‘steps’ because steps imply they are optional, choices imply you own it.  If you aren’t doing it, it’s because YOU aren’t doing it.

Choice 1: Make Peace an attitude – want it. If you want peace, and it’s in your heart, at all times, not just when things are going smoothly, but when you’re running late for work and the kids annoy you, keep peace your priority.

Choice 2: Make Peace a Habit – live it.  Think about what your actions convey, what your words say.  Use “thank you,” “you’re welcome,” “I’m sorry” and “You’re forgiven.”  That doesn’t mean self-sacrifice and that you can’t defend yourself, but that you do it in a non-violent way.  Non-violence isn’t just with actions, but also with words.  Words can tear down as much as a rock can.  Create new habits.  For example, when you walk in your door from work, is your first story about the guy that cut you off driving home, or is it about something positive that happened that day?

Choice 3: Make Peace a Reality – share it.  Once you seek peace, even in the most difficult and frustrating moments, then you make the choice to bring peace to others.   Start going outside of your comfort zone and getting to know people outside of you; once we expand our circle and get to know people that pray differently or eat differently we can co-exist.

One of the things that is often overlooked as a basic need is HOPE.  Hope is a basic need.  You can have food and water, but if you don’t have hope that tomorrow is going to be OK, or better, than what do you have?  Giving hope is an easy, and great, gift.

Jeni on Getting Involved For our World

Read the For Our World poem, and join the For Our World Campaign.  Read the poem to your child, print it and give it to someone, send it in an email, share it on Facebook, post it to your office bulletin board.  For Our World Campaign. Read it. Share it. Live it.

Very importantly, understand the message, your role and how you reflect it to others.  Mattie offered the message to shape it into your life, however you want.  Make peace yours.

 

 

Three cheers for the poet, peace-maker and philosopher that dared dance after every storm – and to his incredible mom.  Thank you both for giving of yourselves to bring peace to us all.

Please visit MattieOnline.com for much, much more.

Also, get your copy of Messenger, written by Jeni, and with a foreword by Maya Angelou, this memoire offers readers intimate details about Mattie’s earliest years through his final days of life. Messenger is the full story of Mattie – “the poet, the peacemaker, and the philosopher who played.”

For your children (and for you), get Mattie’s Heartsongs.  Personally, I have the entire collection; I revisit it often, every time my spirits need to be uplifted.  It is exactly what inspiration and hope are supposed to be.

“Remember to play after every storm!”  Mattie

BONUS: More on Mattie extraordinary life, from MDA, Muscular Dystrophy Association: Fighting Muscle Disease.  Visit MDA.ORG.

 

 

-Stephanie Goetsch, September 2011