Mattie’s FAQ Responses

Posted on: March 14th, 2012 by admin No Comments


“FAQs” from Mattie’s Original Website

Lots of people ask Mattie questions at book signings and speeches, or in e-mails and letters. Below is a list of some of the most ‘Frequently Asked Questions’ and Mattie”s responses.


Going for a ride, Spring 1995

Q:  When and how did you begin writing poetry?

A:  I began writing poetry when I was about three years old. My brother, Jamie, died. I loved him so much. He was my best friend. I didn’t really know my other brother, Stevie, or my sister, Katie, because they died before I was born, but I loved them through photographs and stories my mom shared with me.  When Jamie died, I was angry and sad and scared and confused. A lot of my early stuff was about my feelings after Jamie died, and how I learned to cope with it. Even though I could read and write when I was three, most of my early stuff was what I dictated to my mom because my handwriting was slow and sloppy. Then she gave me a tape recorder so I could make poetry and stories even if she wasn’t free to write them down. When I was five, I started writing some of them by hand, and I learned to use a keyboard and type my work when I was seven. Across the years, my poetry grew from creatively expressing my personal experiences and feelings to reflecting my growing understanding of our world as a mosaic of gifts, yet a world in desperate need of a whisper of hope and a message of peace. Now, I write about many, many different things, but I am back to using a tape recorder a lot because my fingers bleed a lot because of my disease. One day I will get one of those computer programs that recognizes my voice so that I can capture and share even more thoughts and messages.


Q:  Do you go to a regular school and what are your favorite subjects?

A:  I went to a great public school until I turned nine years old, with some of the best teachers in the world. I skipped third, fifth grade, and seventh grades. I didn’t really start homeschooling because I had skipped grades. It was because my health began to get much worse when I was about eight. Even though I would have some good days, I missed so much school that it was like I wasn’t really a part of the class anymore. When I was nine, I did all the middle school courses, and I began high school courses when I was 10. But that doesn’t mean I will graduate soon! My mom and I both believe that high school courses are so rich and there is so much more to education than just books. So I will keep doing various high school courses until I am 16, and then head to college. I have also taken some courses at a local community college, and I have been sitting in on my mom’s courses for her Masters and Doctoral degrees since I was six (and reading her textbooks and studying with her!)  My favorite subjects are history and literature. I love studying people. My least favorite subject is biology and most science courses. And even though I am very good at Algebra II and Trigonometry, I usually don’t enjoy the work.


Q:  Do you have any pets?

A:  I have a Golden Retriever service dog named Micah. He is wonderful. He was born on March 12, 2002 near Seattle, WA. He is a really good help with picking things up and opening or closing doors and things like that. He is even learning when to alert me that something is not right with my ventilator. Sometimes he helps me sort laundry by getting what I point to and dropping it where I tell him to. Other times, he runs off with one of my socks, smiling and wagging his tail. I love my dog so much, and I miss him when I am in the hospital and he can’t come into the ICU.


Mattie homeschool morning with Jeni, Fall 2001


Q:  Do you have any hobbies other than writing and public speaking?

A:  I have lots of hobbies other writing and public speaking. I love to build and create with Legos, especially sets with castles, or islanders, or StarWars things in them. I enjoy video games, but I don’t play any of the violent ones that are too much like the sad things that happen in everyday real life. I don’t like guns at all. I love to read, and I am hoping to begin interviewing people on a video camera and making some kind of a documentary. I like to make lists. I know that sounds funny, but I love to list things: things to do, things to write, how to go through a day, the order of my schoolwork, endangered animals, books to read, Lego wishlists. anything, as long as it’s organized into a list. I also love to talk with my friends on the phone, and go to the MDA Teen Meetings every month, where I hang out with my summer camp friends. Most of my friends are girls, or guys who are older than me. And I love comforting and holding and singing to babies. Babies are such a gift to our world, and a sign of hope.


Q:  Who are your favorite authors and poets?

A:  My favorite book authors are people like Harper Lee (To Kill A Mockingbird), Herman Melville (Moby Dick), Robert Louis Stevenson (Treasure Island), Lois Lowry (The Giver), Ernest Hemingway ((The Old Man and the Sea), and Dr. Seuss (The Butter Battle Book). I love the classics, biographies, adventure, and inspirational or philosophical books. I also love the Lord of the Rings and the Harry Potter series. And I love reading bestsellers (although I wish Life of Pi had a different ending). My favorite poets include Maya Angelou, Shel Silverstein, William Blake, Robert Frost, Langston Hughes, and Emily Dickinson. I like poetry that makes me think, or laugh, or even cry. I like poetry and books that inspire me to live every detail of life to the fullest.


Q:  Do you ever get angry or scared about your disease or dying?

A:  Of course I get angry and scared. I am very human. Some people think I am always brave. I try to be, but I cry like the next person sometimes. I am needle phobic and pain phobic, so that doesn’t help. But even if I get upset, or think, “I can’t do this anymore,” I get myself together and pray or play or talk with my mom or a close friend, and I get beyond that tough time. I might say, “Why me?” But then I say, “Why not me? Better me than a little baby, or a kid who doesn’t have strength or support.” I am very blessed to have God and my mom so involved in my life. I am also lucky because I have a lot of great support from my kin-family (the Step’obbi’comb Fam’), from my church, from my doctors and MDA friends, and from all the people who write to me and tell me how my words have made a difference in their lives. I am so lucky that I get to see the difference. Everyone makes a difference in somebody’s life. Everyone. It’s just that not everyone gets the chance to realize that difference in this life. So my life is very difficult, and sometimes painful, but very full and blessed.


With PICU Child Life Specialist, Terry Spearman, Spring 2001


Q:  What’s it like living in a hospital ICU (intensive care unit) for so many months at a time?

A:  It’s not anything anyone would want to do. But, the PICU and Children’s National Medical Center in Washington, DC is sometimes my home away from home. They are so good to me there. My mom is ALWAYS there for me. She even sleeps on a bench in the waiting room for months so that if I need her or if something goes wrong, she is there right away. And the staff is great. They don’t just give the best medical care, they also give great emotional and spiritual care. They play with me and watch videos with me (most of the guys love playing poker and watching Austin Powers or Lord of the Ring flicks). They laugh at my practical jokes (like the remote control fart machine). They pray with me. And they support the families with the kids. They had a great surprise birthday party for me once when I had been there forever (about five months) and was turning 11 years old. So, even though I have to say it’s boring because you don’t get anything on television (no cable!) and it’s painful because to help sometimes they have to hurt, it’s an okay place to be if you need to be in an ICU. Oh, and all that stuff you hear about ‘hospital food’ not belonging on the food chain. well, it’s all correct. But my social workers and nurses bring me in treats sometimes… like barbeque ribs and Starbucks coffee!Q:  What’s it like living in a hospital ICU (intensive care unit) for so many months at a time?


Q:  Do you get scared before you go on television or give a speech?

A:  Not really. I get excited mostly before going on television. I think the times I do get nervous is when I am doing something for somebody else. I want to do it right. So if I am on a show to talk about my books or my thoughts, I am fine. But if I am trying to introduce Jimmy Carter, or help people understand why the MDA matters so much, or help doctors and nurses understand about family-centered care, or inspire law makers to change guidelines for children’s hospice, then I get a little nervous because I am trying to help with something and what I say may make people listen, or change the station.

Q:  Do you ever get in trouble like a normal kid?

A:  Ummmm… I know my mom will read this, so the answer is yes. Of course. I don’t always keep my room clean or clean up my dishes after myself. But usually I do. Mostly, I put off school work that is ‘homework’ type of stuff. I have ‘school work’ every day that is done in the mornings, and my mom works with me as I learn things in each course. But then I have assignments that I have to do on my own time, by a deadline. Not just  homework, but also longterm assignments and I have to be responsible and manage my time. I’m not great at that because I procrastinate. So, when the deadline arrives, and passes, I know I won’t be ‘doing anything electronic’ (includes television, VCR, video games, Gameboy, even the phone) until the work is produced in good quality. I also do little annoying things like not picking up my ventilator tubing before I move in my wheelchair, and then it can get caught in the wheels and get holes in it. But we have a token plan going, where I earn tokens that get traded in for cash if I remember to do all the medical and personal things on my checklist.


Q:  What is something that most people wouldn’t know about you?

A:  Most people know by now that I am a practical joker and I love to make people want to smile. I don’t know if a lot of people know that I earned a First Degree Black Belt in Hapkido (Martial Arts) before I needed to use the wheelchair and get my trach back in.


Q:  Is it just you and your mom in your family?

A:  Yes, I live alone with my mom, Jeni, and my dog, Micah. We are a small family, but we are very happy together. We live in a condominium that has eleven windows. I lived in basements of other people’s homes for many years, so I am very excited about having windows now. Laura Gultekin, a nurse from the PICU, comes to help take care of me three or four times a month. She’s great. My mom’s best friend, Sandy Newcomb, lives in the condo unit right beside our unit. She helps my mom and me with everything from medical stuff to cooking and laundry. Sandy also taught me to love the Beatles (even though my mom tried to teach me to love John Denver). I consider Sandy, and her family, as a part of my family, too. We are ‘kin-family’ which means we are related by life. She has three grown children, Heather, Jamie-D, and Chris, who are like siblings to me. Chris has a wife, Cynthia, and I was the best man at their wedding, and I am the proud uncle of their baby, Kaylee.


Mattie, Jeni, and Micah on the University of Maryland campus, Fall 2003



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- Mattie J.T. Stepanek