Hi, I’m Sage and I am nine years old. My mommy has dermatomyositis. I have a list about the best and suckiest things about having a mommy with Myositis. (originally posted in 2015)
Q1. What is the suckiest thing about my mommy’s disease?
Having her stay in bed all day because of her pain, migraines, and tiredness.
A1. What is the best thing about her disease?
Being able to stay home, cuddle, and not be running around all the time.
Q2. What is the suckiest thing about being a caregiver for my mommy?
Having to be quiet when she doesn’t feel well.
A2. What is the best part of being a caregiver for my mommy?
Getting to help her do stuff when she can’t (like opening jars) because I am kinda stronger than her.
Q3. What are the suckiest things that have happened because of my mommy’s myositis?
Well, there’s a lot. Mommy couldn’t have any more babies so I don’t have a sibling, her having IVIG, her headaches, she always walks slower than me, and when I was four she couldn’t lift me up.
A3. What are the best things that have happened because of my mommy’s myositis?
Mommy gets to be home with me, I get to be homeschooled, and I get to watch her write books.
Q4. What is the suckiest and weirdest thing about mommy’s myositis?
Being Stronger than her.
A4. What is the best and weirdest thing about mommy’s myositis?
Being stronger than her!
Q5. What are the suckiest feelings I have about my life with mommy’s myositis?
I feel scared – when I was little I was afraid to eat bad food because I was afraid I would get my mommy’s disease – and I still eat super healthy. I get scared when I see her fall or get hurt. Since I am always scared about my mommy’s disease I get easily scared about other things like germs, noises, dark rooms, and getting sick (throwing up especially). I get scared when she has surgeries.
I feel mad because she has to move slower, sometimes (most times) I have to get things for her because she can’t always get up, she can’t always play games when I want to, she can’t go outside when it’s sunny, and we have to cancel stuff (plans) a lot. I feel mad because it is unfair that I don’t have the same kind of life as other kids.
I feel sad when we can’t go do stuff. I feel sad when I see her in pain.
A5. What are the best feelings I have about my life with mommy’s myositis?
I feel excited because I get to learn about herbs, oils, and healthy stuff and I am a Reiki practitioner!
I feel happy because mommy says “I love you” a hundred thousand million times a day. I feel happy because we go on adventures and I get to meet lots of different types of people, for example, I got to go to the TMA patient conference and meet lots and lots of people. I feel happy because I get to cuddle with mommy a lot. I am happy that I am more understanding about when other people are sick and I don’t care about differences that others see in other people. I feel happy because sometimes my mommy lets me watch too much TV. I feel happy because my mommy is really funny and she lets me be really funny and gross (I like to talk about gross stuff and embarrass my daddy!).
I feel peaceful because I usually behave well because I know how hard things are for my mommy. I am peaceful because I have learned how to be kind, compassionate, giving, and loving to other people. For example, I carry my money with me to give to poor people on the street.
I feel joyful because I make people smile and laugh.
I am sad and happy at the same time about my mommy’s disease, but in the end, it pays off in certain ways and I try to find happiness in having a mommy with myositis.
Sage Filmore is the daughter of Emily A. Filmore, author of “The Marvelous Transformation: Living Well with Autoimmune Disease” and Board Advisor of Myositis Support and Understanding Association, Inc. At the time of this piece, Sage is a nine-year-old homeschooler but is an old soul who teaches her mommy new things every day. Unfortunately, she has never known her mommy to be disease-free; since Emily has had Dermatomyositis, Fibromyalgia, and Migraines for 20 years. Sage is an important part of Emily’s caregiving team along with her husband, Scott, and nephew, Rickey. Together they try to have a peaceful, understanding, humorous, and fun home despite Emily’s illness. Currently, Sage wants to be a high-risk pregnancy doctor when she grows up so she can help people like her mommy to have healthy babies.