What it means to have friends who understand
Some of the most important knowledge I have acquired throughout my life thus far is the importance of uniting as a community to create impact and influence great change. I have also learned that adversity plays a big role in shaping oneself. Neither of these values were learned overnight. As a matter of fact it took over a decade to gain.
At a very young age, overnight hospital stays and frequent appointments became the norms for me. It is a life that you quickly began to adapt to when having a sibling who suffers from a chronic illness. My eldest and only brother (Daniel) suffers from sickle cell anemia; an illness that affects the red blood cells ability to deliver oxygen to cells throughout the body. Subsequently, this meant numerous hospital trips during times of crisis and various health scares over the years. Whenever he would be admitted I would always come to visit him and sometimes when he would have longer hospital stays I would even stay overnight. Waking up and going down to the atrium cafeteria at SickKids to get pancakes slowly became a highlight during these tough times. By the age of five, I became acquainted with nurses and knew hospital surroundings like the back of my hand. As I grew older it started to become apparent that this life I view as normal was a stark contrast from the life of my fellow peers. At times it was hard to relate to my friends as I felt as if I must be the only one facing these challenges. At times when I would try and express my struggles with individuals like my parents and family members I felt very shutdown. It was as if they viewed my struggles as less important than my brothers because he was the one battling a chronic illness. They failed to realize the massive impact that illness can have on siblings like me.
Unfortunately, at the age of thirteen, I became a patient as well. I was diagnosed with PTSD, anxiety and panic disorder. Every day was a struggle. I was seen as an outpatient by my doctor on a weekly basis and they gave me key tools to help me cope.
It was during this time I joined the Children’s Council at SickKids. I became part of a group where we congregate and participate in providing input on decision-making processes within the hospital. It is an extremely innovative method that allows for the views and opinions of individuals that are dealing with the hospital first hand to be heard. In addition to that, hearing the opinions of youth allows for a different perspectives that can aid in allowing for unorthodox approaches towards various initiatives.
A few of the many projects I have had the honour of being a part of through my few years on the council are the implementation of Epic, redesigning Marnie's Lounge and recreating the family orientation manual. The council serves as a great place to meet other people who can understand many of the experiences that I have faced being a patient and sibling of a patient. We get together, to hear and share stories and reminisce on how far we have come and how much further we still have to go. I have been able to meet individuals who have looked death in the eye and still have a positive outlook on life that can engulf a room! It allows me to feel that I am not alone and has also opened my eyes and forced me to view life in a different light. You can't allow negative experiences to allow you to become complacent. Far better to allow them to help you grow.
As my final months being a SickKids patient approach, a new chapter will begin in my life as another one closes. This hospital has been a place where I have shared many laughs and shed many tears.
I will be serving as a member of the Children’s Council this fall and will continue to contribute to SickKids and serve as an advisor on the Family-Centered Care Advisory Council next year.
I am grateful for the many friends and experiences I have had in my time here.