Jeni’s Story

My son, Mattie, was born with a rare neuromuscular disease. As a result of this condition, he often spent many months at a time in the hospital. This is not a typical (or ideal) setting for any person – especially children and young adults who are learning about life and the world, and who are in need of peers and community. Mattie was lucky though. In addition to having his mom by his side much of the time, he was blessed with the truth of community that grew from the support and care and love and connections that he had with his healthcare providers, and with other children and families he met across the years.

One of the most remarkable and memorable friendships Mattie made with another patient and family began during the spring of 2001, on the day that “Little Nickle Pickle” became a patient in the ICU bed right next to Mattie’s space. It didn’t take long for 10-year-old Mattie J.T. Stepanek and 2-year-old Nicolas Copeland to develop a special bond, and for Mattie to make a lifelong impression on his parents, Scott and Jillian.

Mattie loved that he could nurture this adorable little toddler next to him. He found joy in doing anything that helped Nickle Pickle know, “you are okay… you are not alone… you have a friend… you have a community of support here…” Mattie sang songs and read books with Nicol. He chanted the alphabet and played silly games to calm him. He kept Nicol’s folks updated on medical, emotional and developmental ups-and-downs when they came in after work. And yes, even though Mattie was immersed in high school and college level courses at the time, he truly enjoyed watching Barney and Sesame Street with his little friend – because it gave them both purpose and peace, even during challenging times.

Nearly 18 years have gone by since this friendship began. In that time, Nicol has grown in body and mind and spirit, and is now an amazing young man who embraces and celebrates life despite development challenges resulting from his medical condition. Mattie passed away about three years after meeting Nicol, just before his 14th birthday, but his legacy of inspiring hope and peace, and of choosing to play and work and live with purpose, and of “getting to know your neighbors around the block and around the world” continues to grow and ripple forth in time and space.

For me, it has been a blessing to stay in touch with the Copeland family across the years. They have always been generous and active supporters of the Mattie J.T. Stepanek Foundation, and they have never hesitated to roll up their sleeves to help us build a peace garden in Mattie’s Park, to celebrate Peace Day each July, and to share Mattie’s “Pathways to Peace” vision with friends and family and colleagues and community members, and soon – with the creation of Mattie’s Peace Room in the new Main Street project housing development!

I wear many, many hats in life, and I love them all. Even though my four children have all passed on due to the rare medical condition I unknowingly passed on to them, I am ever-proud to wear my “mommy hat” as I nurture other children and folks of all ages. I also have hats that fit with my roles as an adult with a progressive disability, as a senior faculty specialist in early childhood special education at the University of Maryland, as the CEO of Mattie’s Foundation, as “Mom-mom” to the growing number of “grandkin” in my family, as “Mama Peace” to more than 300 global teens and young adults around the world who study Mattie’s peace message, and as “friend” to anyone who simply wants to toast to life together, because life is worthy and I embrace it with gratitude and a celebration by choice! But, I have to say that one of the most exciting hats I have had the privilege of wearing recently was the orange construction hat that I donned last fall during the groundbreaking ceremony for the Main Street project.

Eighteen years ago, Mattie reached across an ICU bed space to connect with a little boy named Nicol and redefine a life experience by letting him know, in attitude and action: “You matter! We can do this together!”

Now, Nicol’s family and countless others are reaching across other barriers to redefine inclusivity with a community housing project that will benefit people with and without disabilities. Wow! That is a full circle truth and reason to celebrate. I am grateful to be a part of this endeavor, and can’t wait till that Main Street yellow completion ribbon is cut and, with purpose and peace and as a community, we say, “Welcome home! You matter!”

Jeni Stepanek, PhD
www.MattieOnline.com
www.Mattie4Sainthood.org