- What type of health condition or disability do you have and when were you diagnosed?
I have Limb-girdle muscular dystrophy; I am not sure of the subtype. I was diagnosed at the age of 4. I have never been able to run or jump and climbing stairs has always been difficult. I am still able to walk at age 38, but I fall fairly frequently.
- What was your initial reaction to receiving your diagnosis or to finding out about your health condition?
I was so young when I was diagnosed that I never knew anything different. I know my parents were surprised and a bit devastated when they first learned of my diagnosis and then my sister developed similar symptoms a couple of years later.
- Is your condition progressive or is your health stable? If it is progressive, any comments on dealing with and adapting to the changes?
My condition is progressive, though when it has progressed, it hasn’t always been obvious until I realize that something is harder to do that I was able to do years before…such as getting up off the ground used to be a bit easier and now I am unable to do so without assistance or without a piece of furniture around to help get myself up off the ground. I usually have been able to adapt and adjust to the changes by finding new ways to do things. I have figured out several different ways to get off of a chair, a couch, the floor, and toilets, etc. It’s funny because I didn’t even realize I had figured out so many different ways of doing things until my husband pointed it out to me a few years ago.
- How did your parents treat your disability growing up? Did they expect the same out of you as your siblings, if you have any? How did they help you overcome thoughts or worries, if any, about limitations?
My parents treated my sister and I as though we didn’t have a disability. We were never allowed to dwell on the fact that some things are difficult to do and we weren’t allowed to feel sorry for ourselves. We tried to do everything else that other kids did…though sometimes there were adaptations.
- How did your condition impact your personal relationships through the years? (childhood, teen years, adulthood, etc).
Childhood was sometimes difficult, and I was frequently teased because I was not able to run. Sometimes I felt left out and sad, but I had a few friends who stuck by me and helped me through the difficult times. In my teen years, people didn’t tease me as much as when I was younger, but dating was difficult and I remember feeling “inadequate” because I wasn’t like everyone else. I remember thinking that I would never find someone who would accept me as I am. Even adulthood has had some challenges. Before having my daughter, I was an elementary school teacher. I was asked to resign from my first teaching job because of my disability. Thankfully, I found a better teaching job the following year and I stayed there for 8 years before deciding to be a stay at home mom. And I did find someone who loves me for who I am—my wonderful husband.
- Can you share about your experience of being pregnant and raising a child while living with MD? Does your daughter have MD and did you have concerns about this? Please also share anything you’ve found to be particularly difficult or helpful about parenting with MD.
Although my husband and I had initially planned on adopting children, we met with a muscular dystrophy specialist and discussed pregnancy with him. He was a little hesitant at endorsing pregnancy in my condition, but we decided to try and have a child anyway. The first few months of pregnancy weren’t too difficult, but after 6 months, I had to ask my husband to help me out of all chairs. Other than having a difficult time getting out of chairs, etc., pregnancy wasn’t too difficult. I did have a c-section because my doctor didn’t know if it was possible for me to endure labor. For about a year after pregnancy, I was weaker, but thanks to lots of physical therapy, I regained much of my strength and even a bit more!
As far as we know, my daughter doesn’t have muscular dystrophy, though she is a bit behind physically due to having knocked knees (her knees turn in and hit one another when she runs…her doctor says she will outgrow this eventually). The first time I saw her jump up off the ground and climb stairs without using a handrail, I did rejoice.
As far as what I found to be helpful, my husband usually works from home, so he was able to help a lot of the time. When he would work away from the home, my parents or my in-laws were always around to help with my daughter. Once she was able to walk and I could trust that she wasn’t going to get herself into trouble, I needed less help. I still sometimes need help when going out of the house with my daughter on shopping errands, etc., but then I remind myself how much I am blessed to have her and how fortunate my daughter is to always have lots of family around. If you have some means of support from family or friends…I would encourage anyone with MD to have children of their own.
- Who has been the biggest influence in your life and why?
Jesus has been the biggest influence on my life. In high school, I became a Christian and the way I viewed my life completely changed. I no longer had to worry about what others thought of me…I realized that my life has a plan and a purpose! My family and my husband have also been great influences on me and are always encouraging me to keep going and never give up.
- Did you ever have a time in your life where your disability caused you to become very ill? How did that time affect you emotionally and describe how it might have strengthened you.
Limb-girdle muscular dystrophy has never been directly related to any illnesses that I’ve had, but due to all of the falls I have had, I have had a few serious injuries over the years. Ever since I was a kid, I have always had a hard time asking for help, but with each injury, I have come to realize that it is okay to ask for help.
- How did your disability inspire you to greater heights or motivate you to work harder?
My parents inspired my sister and I to never give up and to never quit even when things are difficult. I went to college, traveled abroad, and became an elementary school teacher. I have tried to never dwell for more than a minute or two on the things that I can’t do, but to spend more time on the things that I can do.
- What is the most important factor that has helped you overcome challenges?
Three things: Focusing on the things that I can do not on the things that I can’t. Never giving up. And most importantly…knowing that God has a purpose for my life, disability and all!
- Do you live by a certain “motto” (saying)?
“With God all things are possible.” Matthew 19:26
- If you were speaking to a young person today with a disability, what advice would you like to give them? What would you like to tell them about reaching for goals and achieving dreams?
Never, ever give up! There is so much that you can do. Don’t let anyone try to tell you otherwise.
- Is there anything else you would like you share about yourself?
Although sometimes I forget about who I am and start to worry about where I will be in a few years or if I’ll be able to do this or that, I remind myself that God has always been with me and has always provided. With each change that comes, I will adapt and adjust just like I always have…