Growing up with a disability that gets worse over time is not an easy thing to do. You are constantly planning ahead, not sure how long you will be able to do certain things, and always thinking about things many people take for granted...
I was officially diagnosed with Duchenne Muscular Dystrophy (MD) in Grade 3. MD is a hereditary disease that causes deterioration or wasting away the muscles - essentially, they get weaker overtime.
When I was a baby, my mom noticed that I had very muscular calves and walked on my tiptoes, which in retrospect was MD (Muscular Dystrophy). Although I started showing symptoms at an early age, she decided to wait to see a doctor, knowing there was nothing that could be done and hoping she was reading into things. Her brother Randy had had MD so she was well-acquainted with the disease.
One of the first times I noticed something was different with me was when I took dance. I would cry because I couldn’t do what the other kids could. I couldn’t do a heel tap, because part of MD involves having shorter heel cords, in other words my ankles don’t reach a 90-degree angle like most people’s can.
Getting up off the floor became more difficult over time, as did stairs. I often fell and they became so challenging I couldn't do them anymore.
Life with a Wheelchair
During the summer between grade 11 and 12 I began using my wheelchair full-time. One thing that helped make my decision to use it full-time was something a therapist told me. She said, “Let’s say you have $100 to spend in a day. If you spend $80 during the day you only have $20 left for the evening. The same with your energy. If you spend all your energy in the day, you have less for the evening.” It was then that I realized I needed to have more energy for the entire day. So I decided it was time to try the wheelchair out.
Using a wheelchair full time was not an easy beginning to my grade 12 year. My friends who I had up to grade 12 began hanging out with me less and less. This was difficult for me, because I knew only one thing had changed - I was full-time in my wheelchair. Also, in order to be transported, I had to get a van with a ramp in It. That also came with its own trials.
Being in a wheelchair is difficult, but without it I honestly don't know where I would be right now. It has challenged me and grown my faith more than I ever could have imagined. Particularly when it comes to worry.
As far back in my life as I can remember I have been a person who worried a lot. I have worked through the many ways it appeared in my life. It has been a very long road and I am still not through it. One thing I do know is that I have come so far and only God could have brought me this far.
Part of the reason I worry is to because I need to plan-ahead. Since I am in a wheelchair, I have to plan stuff like avoiding stairs, wondering if the bathroom is accessible, parking (I have a ramp in my van that comes out the side), if there is buttons for the doors, and so much more.
One thing I learned about worrying is this: it's okay not to know what is going to happen next but God does. That's why I came up with this quote. "I will take life one step at a time. Not knowing what will happen but trusting that God does know what will happen”. In the Bible it says in 2 Timothy 1:7 "For God gave us a spirit not of fear but of power, love and self-control"
After I graduated high school, I signed up for an eight-month bible program through my church. Once I was officially enrolled, I started out excited for School of Ministers (SOM), but the closer it got the more worried I became. But SOM ended up being one of the best things I have done - it challenged me in so many ways and I went out of my comfort zone often. God did so many things in my mind and heart in that time. When I think back I don't know how I could be there from 7am-4pm twice a week, and be focused and alert and dedicated the whole time. God truly carried me in that time.
What I’ve Learned
Some of the things God is teaching me is: If we don't spend time with God things often get harder, but it is when we begin to spend time with him, we begin to trust him more. When things get harder it is God testing us to see how we react when things don't go our way. That’s when our true character is revealed, which can be scary. But God wants vulnerability from us. He wants to know our hearts.
God has continued to grow me in trusting Him through everything. God has been showing me He is faithful no matter what. God doesn't call us to easy things. Sometimes they are hard, possibly way harder than we can handle, but He is faithful and is always with us, "He will never leave us nor forsake us.” Deuteronomy 31:6
God has also been showing me the importance of community. It is so encouraging to have people who can always count on for prayer. It is so humbling to admit your struggles and so encouraging and uplifting to know you have people to pray for you. God is growing us, we are not perfect and we make mistakes, we can accept those mistakes and improve on the things we need to grow in. The important thing is that we don't stay where we are but we continue to move forward through Christ.
My Life Now
If someone would ask me what I would want to change about my life, I would say, “I don't want to change a thing.” Why? Because I know that God has a purpose and a plan in every single situation I face. I may sometimes struggle to believe it at times, because I am human and have moments of weakness and doubt. But He gives me strength and the only way He can do that is if I am weak.
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:10.
Based on what my disability is, I am doing much better than I should be, My heart and lungs are staying consistent which is extremely abnormal. I can still drive a car and transfer by myself. Many people who have MD are living even more difficult lives. I am doing amazing and I only have one answer for that ONLY GOD. Only God can do such amazing things.
"Those who hope in the Lord will renew strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” Isaiah 40:31
About the Author:
Kiana enjoys spending time with her family and friends, especially her cousin Sadie who is 7-years-old, She loves singing and music, She also likes to laugh! She enjoys shopping, playing games, and watching movies. To quote Kiana, "Most of all I want to continue to grow in my walk with Jesus, trying to learn to lean on him and trust him despite what happens around me, to live life to the full, and not let fear or anything keep me from what God wants for my life."
If you would like to send Kiana a message, email firstname.lastname@example.org and put her name in the subject line!