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Given that SMA is built into my genes, to say that it is a part of me is an understatement if there ever is one! Even if I sometimes daydream what my life would be like without my disability, the fact is that a “normal’ life is not an option for me. I have never known any other way of life than this but that doesn't mean that it's been an easy road.
It also was not easy for my parents when I was diagnosed at one years old through a muscle biopsy. It must have been a shock for my family but for me, it took quite a while to realize the magnitude of my disability. Sometimes I still feel like I'm adjusting to reality! My circumstances are actually getting more complicated as I get older. That being said, I have still had quite an amazing life, starting with my family.
My family means so much to me, with each one playing a important part in my life. I live with my parents in a small community in Southern Manitoba, Canada. My parents are my support system and primary caregivers. I have two amazing sisters, one brother in-law, and five fabulous nieces and nephews. Even though we drive each other crazy sometimes, I don't know where I would be without them!
I attended kindergarten to Grade 12 in my community and graduated high school with honors in 2006. That fall, I started attending Canadian Mennonite University and have slowly but surely been working towards a BA in Counseling Studies, with a second major in English. Yes, it has taken me 11 years to get this far in my studies but I absolutely love to learn. I happily embrace my inner geek chic, right down to my home library and obsession with office supplies!
My elementary and high school years were a combination of some of my happiest and saddest moments of my life. I have had reconstructive hip surgeries, a spinal fusion, and have struggled with anemia and Gastroesophageal Reflux Disease.
When I was 5, Muscular Dystrophy Association Canada nominated me to be part of a poster campaign that involved getting to meet NHL Jets player Kris King. I was so nervous on the day of the photo shoot but from the moment we met, it was so natural. Kris and his wife Paula had a daughter my age and our families quickly became inseparable, with a bond of friendship that has lasted to this day.
While it is difficult to form friendships when you have a disability, I have been blessed with a few special people in my life that I know are there for me through the ups and downs. It was especially difficult during the middle school years, when my friends were taking babysitting jobs after school and my sisters were busy with sports and other extracurricular activities. Noticing that I didn’t have a hobby, my parents enrolled me in a private art class once a week. Starting at age 12, I began painting with watercolor and to my surprise, my paintings actually turned out! People started expressing interest in purchasing my work but I couldn’t keep up with painting originals due to fatigue. With the encouragement of my parents, we started investing into turning my artwork into numbered prints and greeting cards.
When I was 16, we hosted my first art show and I began entering craft shows and art sales. I also started a corporate Christmas greeting card business which I ran until 2015. I am currently taking a break from painting but my small business has taught me so much about perseverance, accomplishment, and discipline. (Interested in seeing a selection of my paintings and cards? Visit my Etsy shop!)
I love spending time with family and friends, cheering for the Winnipeg Jets, attending my community church, and finding beauty through fashion, art, and décor. Through this blog, I welcome you to walk alongside me as I try to deal with the highs and lows of having a chronic disability. I also hope that my life will educate and empower you as you go through your life too, whatever struggles you may face.