I
believe in superheroes. My brother wears his superhero cape and mask around the
hospital as it shows his strength and his courage as he fights this battle
against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no
magic pill, and no cure. My brother, Tyler and I both have several rare,
incurable diseases and this has brought a bond between us like no other.
I
was twelve on April 16th, 2011 when Tyler had a seizure in my arms.
I remember screaming for help, thinking it was my fault, collapsing on the
ground crying with my younger brother, not knowing what was happening or if he
would survive the night. Tyler turned blue within a matter of minutes and ended
up having two seizures that night. Soon later he was diagnosed with
Mitochondrial Disease and he is still showing the world what amazing things he
can accomplish despite the obstacles that are in his way.
Since
then Tyler has cheated death twice more making our total five times. Which is
way too high for an eight-year-old boy! I will admit the facts and statistics
scare me because I know I will probably loose my best friend but I pray every
day a miracle treatment or cure will come. I just hope it comes and saves my
superhero before it’s too late.
Over
the weekend Tyler and I were talking while I was pushing IV medication through
his Arteriovenous fistula and several things he said reminded me of the past. We
were just having a normal conversation about something funny and then he said
he had something to say. I listened and he broke my heart. I hate it when he
says he feels lonely and scared. He told me how thankful he is to have me so he
doesn’t feel so lonely because I understand the pain, the tears, the tubes, the
wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy
says he wants to rip his tubes out because it hurts too much. Sadly,
this is the reality of Mitochondrial Disease.
Through
everything that has happened we are both somehow alive today. I think it is
because we have each other. Being sick has made us best friends ever since day
one. I am proud to be his sister because he has shown me how to live my life a
little differently than most do. Before I finished giving him his medicine the
last thing he told me was “But life is just life, you know? Whatever happens,
happens.”
Superheroes
are supposed to sacrifice things in their life for others and that is exactly
what Tyler does. Everyday Tyler could only care about himself and how much pain
he is in. Instead, he puts others first including myself. It is just something
we have always done since the beginning. Having two sick kids in our family is
hard enough on our parents and siblings. They need a break just as much as we
do. Even though Tyler is hurting so bad he takes the time to worry about them
before he worries about himself. Tyler defines what a true hero is courageous,
bold, and a fighter.
What an amazing trooper your little brother is. Wishing you both the best of luck, and a little less pain for the upcoming year. A true hero, he indeed is!
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