I was a rough, active, daredevil and fearless child. So, you can only imagine how hard it was for me to have to be so careful around my brother so as not hurt him. I have memories from when I was younger, (where I would have to either stop or change the activity I was doing), because it presented too big a risk when it came to my brother’s wellbeing. Ever since I was a child I have always felt a tremendous amount of guilt and pain whenever I hurt someone. I am a very clumsy person (just like my mom), which made the task of not hurting Jonathan all that more difficult. I always felt like I had to walk on eggshells to try and limit the times I would hurt him.
Since I was born into a family with a ‘butterfly child’, I have never known another lifestyle other than mine. People sometimes ask me, “Noémy, if you could, would you wish to have been born in a different family?” Every time I answer “no”, even if it has been difficult. I have never known my life any different, nor would I want it to be. Living with someone who has EB has allowed me to be able to comfort and care for people and their well being. To mature at a quicker pace and develop my love for medicine. My brother’s condition also gave me my passion to make a difference in the world in any way possible.
I recall a few years ago when the bone marrow transplant was first brought to my attention. At the time the idea didn’t bring much to the table. My mom had brought it up and that was all. I never would have thought that one day my brother would be so far away undergoing the procedure. When it was decided that my mom and brother would go to Minnesota to undergo the transplant, it was a big reality shock for me. It scared me to think that my brother had to follow such an extreme course of treatment to try and improve his quality of life. When it was time for my brother to continue his medical journey, fear overcame me. I was worried that my life would be thrown off track without a mother there to help me through my “teenager problems” or a big brother there to give me advice. I never imagined that it would have the complete opposite effect. Having my mom and brother so far away has made me stronger, independent, structured and more focused on school and volunteer affairs.
I have had several people tell me that I need to stay strong for my mom and brother. When I told my mom this she told me, “The only person you need to worry about is you, and if your brother isn’t strong enough, I will be strong enough for the both of us.” My brother’s show of strength can only inspire me to be stronger because I know that whatever he has to go through must be 100 times harder for him than for me. Through the good and bad times, my family and I have supported each other. I can only hope that upon my mother and brother’s return, we will focus on the many years we have gained, rather than the years have we lost.
I think about my mother and just how hard this journey must be for her. She left our family, friends and I, to go to another country with Jonathan to try and prolong his life. I admire how strong and courageous she is. My mom’s and Jonathan’s temporary journey back home between transplants (which lasted five weeks) was short but wonderful. I can only imagine how lonely it gets stuck in a hospital room with no one else but each other and the medical staff.
Even with all the post transplant complications, I have never lost hope. I try and stay as optimistic as I can because anything short of that is in my mind, not acceptable. The time apart from my family has only brought us closer together. My brother and I have always had a special bond. Even though EB has complicated our relationship, I think it is even stronger than that of a regular relationship between siblings because of all the obstacles we have had to rise above.
When I reflect on the major hurdles and surgeries my brother has gone through during his life, I can’t stop to think about how hard it must be for him. I sometimes sit and think about how he manages to live every millisecond of every day in unimaginable pain. I have found myself thinking at multiple occasion, “Why him?” After so many years, I have resigned myself to this known saying, “Everything happens for a reason.”
Observing Jonathan through his journey I have concluded that he is nothing less than an extraordinary human being. He is my role model, my idol, my saviour and most of all he is my superhero. Living with a brother who has EB has allowed me to thrive. It has pushed me to be a better person and my biggest hope is to one day be as strong as him. EB has taught my family a great deal of life lessons. Having someone close to me with such a condition has brightened my life; and has taught me to enjoy life as it is, and to live life to its full potential.