Sharing my testimony with people has always been a daunting task for me for two reasons. It calls me to be vulnerable with people who don’t know me all to well, and in fear that once I share my story that is all I’ll ever be. However, I fully believe that the trials I have gone through are not for my own reflection of how I persevered but to glorify the love God has for all of us. It is not just my story that God has influenced or played a major role in, but in each of our stories.
My testimony began when I was 6 months old at Sick Kids Hospital in Toronto. I was diagnosed with Beckwith-Widemann Syndrome (BWS for short), which is a genetic overgrowth disability that affects 1 in every 15,000 births. While many who are affected by this disease inherit it from their father, mine was a mutation that randomly occurred. This has always been a point I emphasize to show that we are all uniquely designed, not just some random clump of cells.
BWS is not a curable disease, but it is treated with constant monitoring from specialists, but was more closely monitored until I reached the age of 12, which was my “safe” milestone. But I am still always at risk for many things to go wrong. BWS was fairly rare while I was growing up with not a lot of research to understand the impacts of the effects. This led to my extensive time at Sick Kids, which became a second home to me. With all the monitoring and procedures that I would have in a typical visit, I became very familiar with the hospital system. And while my time at Sick Kids had a lot of painful moments like surgeries, countless ultrasounds, painful kidney stones, and cancer scares, I became accustomed to pain. I would also get swelling in my legs that felt similar to a snake wrapping and constricting around it whenever I ran or engaged in intensive physical activity. But that never stopped me, I simply just dealt with it.
Like most testimonies, my story doesn’t stop there. All the pain and hardship I went through each day was only adding to my perseverance to defy the odds. My team of doctors would often find medical miracles when it came to my case, the biggest being signs of cancer suddenly disappearing. Or more recently, a 1.4cm kidney stone that was stuck for 2 years suddenly disintegrated just before surgery. While this part of my testimony may give inspiration to those who are in the medical system in need of healing, it also continues to remind me that He gives me strength every day.
Though I could continue with my testimony of the other areas God has helped me, I want to focus on the goodness of God’s design for me. While I was born with a disability that will continue to affect the rest of my life, I am blessed by it. Which sounds crazy. I grew up thinking that I was always different and broken because there was something always wrong with me. Being isolated because no one had the same issues as me or understanding what I went through each day. Now, having realized how amazing it is to be so intricately designed to handle and endure all that I have faced, I understand the gift God has given me. BWS isn’t a terminal disease, but it can make life very difficult and can cause life-threatening complications.
Like I said at the beginning, I don’t typically like to share my story but I also know the calling I have with a story like mine. My favourite verse that has always spoken out to me is Psalms 139: 13-14 saying,
“For you formed my inward parts, you knitted me together in my mother’s womb. I will praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
This verse has always been in my heart, because it shows how God really does care and think about our lives fighting into His plan. While my family and I never understood what my life would look like, God always knew. He knew how much I would love playing basketball and swimming. He knew that school was hard for me, having dyslexia, but I would graduate with scholarships. He knew the family I would need to advocate for me while I was young. He knew that I would become a youth leader and use my experiences to help students in hardship. And He knew what I could handle in hard times, and that I would always trust Him.
What I hope for students to understand is that while testimonies are uniquely designed for us to go through, it may seem lonely going through hardships that others don’t, Jesus is right there with you through it all.
~ Chanel Hiemstra – Grade 8 Girls Leader
