Welcome to Creative Special Needs Super Mom Spotlight where I interview women in the arts caring for special needs children.
Let me introduce you to Liela Joy Marie Fuller; writer, author, poet, and mom to Malachi. I met Liela through an online writing group. When her book, Life's Reflection came out, I knew I wanted to support her and her work. It was one of the best things I bought with $10! The poems in her book are so raw, real and well... reflective! My favorite poems in this book are Love Soup, Distant Friend and of course, Malachi.
One of the things that stood out for me in this interview was Leila's perspective that mothering a special needs child is "part of your story." Early in my own journey with special needs mothering, when it got super tough, I would think that this was all a bad re-write to my true story, not so! As I accepted this part of my life's tale I began to see possibilities.
Now on to the interview!
What is your child’s diagnosis and how does it affect him? How does it affect you?
My son has Charcot Marie Tooth Muscular Dystrophy and he was diagnosed at 5 years old. It generally affects some of his motor skills. He has had, at times, problems with walking, writing, and running. To see Malachi, you would not know he has a problem but if you ask him to run with kids his age you might see that he is a little slower. Having lived with the disease since he was 5 and now being 14, he is very conscious of the disease and its affects and he rarely allows it to get to him. In fact, he refuses to be treated any differently because of it even when I feel like maybe he should be allowed. At school, he refuses to use the elevator or request special time when taking a test because he does not want to be seen as different. It is an uphill battle because he sometimes needs the extra time but I completely understand his viewpoint. As a Mom his disease affects me in that I worry more and I definitely pray more. It is so hard battling with him about whether or not he needs more time for tests or needs special equipment because he just wants to be normal and I just want to make sure he is afforded every opportunity to succeed. I have had to learn to choose my battles with him. If he does not want to take the elevator I won’t force him but I will insist on extra time for tests/quizzes especially standardized tests and he is OK with that. We try to make the best of each day and most days we don’t think about CMT – we just live our lives the best way we can – together.
Tell us a little bit about your child
Malachi is a typical 14 year old boy. He loves video games, reading, TV, and he hates homework. In fact, homework is a constant battle in our house so if anyone has the magic potion to making teenage boys want to do homework I am willing to listen! He is very much like me in that he is quiet initially but once he gets to know you, he will open up.
Describe your creative journey pre-kids to post kids. How have you been transformed?
Before I had my son, writing was not really something I thought much of. In fact, I have been a writer since I was 5. I wrote stories, I wrote plays, songs, poems, op-ed pieces, etc. I just thought it was how I expressed myself best. Once I had my son, I continued to write but when he was young not as frequently. When my son was diagnosed with CMT Muscular Dystrophy, I began to journal and blog about my experiences because I could not find any support for my situation. As he got older, I continued my journaling but discontinued the blog after finding a site dedicated to children and adults with CMT. So writing has essentially always been a part of my life, it just takes on various forms and meanings at different times in my life.
Specifically, what kind of writing do you do?
I write various things but my main genres now are Poetry and Fiction. My first book, Life’s Reflection, is a poetry book. Life’s Reflection takes my readers on a poetic journey through various times in my life through my poems. You will find poems about love, poems about my family, poems about loss, grief and pain. It is truly a reflection of my life thus far. And while not every poem is reality for me personally; every poem has a truth to it. Every poem is the story of someone.
What is your schedule like? How and when do you find the time to work?
BUSY!! Can I say that five more times? I work a full-time day job and I am also very active in my church community so finding time to write is sometimes a job in and of itself! I tend to make sure that Saturdays are dedicated almost exclusively to writing. That does not mean that I don’t do other things but it does mean that I take special time to get a majority of my writing done for the week that day.
What is your process? Do you craft full time or do you have another job?
I am not sure that I have a special process. I just write and allow the characters or the story to speak to me. I don’t force it – if the characters are not speaking then I move on to research or development or even walk away. Sometimes just letting it sit for a while and coming back to the story provides the jolt I need to get back into it. I do have another job.
Besides writing, what else do you do to relax, unwind, cope? Can you mention a particular stressful incident with your child that gave you the opportunity to employ said coping strategies?
I love music; it helps me unwind but mostly prayer and my relationship with God. That is what gives me strength. Last year about this time, Malachi fell on a waxy part of his schools floor and broke his ankle. He was too weak to use the crutches but we had no choice at the time. A two minute walk from our car to our 2nd floor apartment was an hour long ordeal with lots of tears for both of us. He ended up having to sit on the stairs and pull himself up because there was no elevator in our building. I ended up having to pay for a wheelchair because my insurance would not cover the cost of it. That was the longest 6 weeks of both of our lives. He ended up having to be home schooled and some of his teachers were not very cooperative. It was a nightmare but thankfully my Mother and Father stepped in with finances and time so that I could go to work and Malachi would have someone to be with him at home.
What tip(s) would you give moms caring for special needs children? What have you learned?
Patience…Patience…and More Patience! Having a special needs child is not easy and people often think you are super woman while you are feeling like a failure. You have to have patience with yourself and with your child. It’s the only way you will be able to breathe. Life is not always easy but you can make it through. I have learned that with prayer – lots of prayer, tears and patience I can make it. It will be hard sometimes and yes, you will wonder why God gave you this test and trial but God will never give you anything you cannot bear. You were meant for this – this is a part of your story and your child’s story. And one day you will be able to share your wisdom with someone else who is going through the same thing. Stay Strong Mother!
Do you have a blog? Facebook, twitter, where can people follow you?
I no longer have a blog but I am on Facebook and Twitter
Twitter: @authorljmarie
Liela-Joy Marie Fuller has been writing since the age of 6. She is currently seeking publishers for her first Poetic offering entitled "Life's Reflection". She is also working on her first novel.
Please show your love for Liela in the comments. Thank you!
