Your long standing friend and nurse Gemma wrote this in light of Mitochondrial Awareness Week. I was thinking you would enjoy it as much as I did.
It was
in 2010 that I would begin what I would define as the most important part of my
nursing career. I had only graduated
nursing school in 2009, and had just begun my new adventure. As luck would have it, I ended up with an
amazing family, with the most amazing boy I had ever met…Jacob.
I can
absolutely say that I didn’t truly know what defined a person until Jacob
taught me. In the early days of “Gemma
and Jacob”, I would take stacks of school books and printed literature on
seizures, mitochondrial disease, mitochondrial function, drug interactions, etc… In my school set brain, I needed to absorb as
much of this as possible because, Jacob was a little boy with mitochondrial
disease. I needed to know about
mitochondrial disease. This was the ONLY
way I was going to be successful.
I
wouldn’t say that diving back into the books was a waste of time; I definitely
got a better understanding of what Jacob’s fight was all about, but I now
realize, I was defining him by his disease.
Just when I thought I was starting to get it, Jacob decided to show me a
few things. By this, I mean he decided
to teach me a few lessons. The one I
learned the quickest was: Jacob does not
like following the book. Not just the
book on mitochondrial disease, Jacob didn’t like following the book on
ANYTHING! Jacob had the sweetest eyes,
with the chubbiest red cheeks, and the most sincere smile… but this boy was
feisty!!!
I
slowly started taking fewer and fewer books to Jacob’s, because the best
resource was Jacob himself. I started
taking cues from Jacob. The way he moved
his head, his eyes, the way he twitched his fingers and toes, even just the
rhythm in which he breathed. Jacob
started to teach me, that mito did not define him. Jacob was not, “a little boy with
mito”. Jacob was: a son, a brother, a
grandson, a friend, a nephew. My job was
NOT to learn everything I could about Mito, it was to learn everything I could
about Jacob, and how to help Jacob fulfill each of his roles to the fullest. I would help Jacob, be Jacob.
Because
he was so fragile, Jacob was homebound for much of our first year
together. We would get out for walks
and doctor’s appointments, but never go to do anything incredibly crazy. I decided we would make the most of our 4
walls. We crafted, we painted, we sang,
we danced, we even tried to annoy Sarah.
We plastered Jacob’s handprints and footprints on absolutely anything,
and most importantly, I gave this boy as many kisses as I possibly could. He was
in and out of the hospital so much that first year. Despite this, after each
discharge, Jacob did not come out “a little boy with mito”; He came out a
fighter, a warrior, a superhero.
Once
Jacob made it very clear that Mito wasn’t going to have its way, we got to go
back to pre-school. This was the
coolest, and most incredible part of Jacob’s life that I got to
experience. I would obviously need to
stay in school with Jacob, which would mean that classmates may need to see me
perform a suction or a transfer. At the
beginning of each year, I would talk to Jacob’s classmates about who I was, why
I was with him, and I would show off our fancy equipment. I would explain that Jacob had something
called “Mito”. I would turn on the
suction machine so they could hear how loud it was, and explain that what I was
doing would not hurt Jacob. I would
explain that sometimes they might see a little tube on Jacob’s face to help him
breathe better, or that sometimes we might have to leave the classroom if Jacob
felt overwhelmed. I answered questions
like “Why don’t his legs work? Does he eat ice cream? How does he eat? Why doesn’t he talk?” What I found myself naturally adding was that
Jacob was still just a boy. That he had
a sister, he liked to draw, craft, listen to music, and to be with
friends.
While
in pre-school, I could still carry and lift 42lb Jacob with ease. Friends would ask him to ride bikes, play
basketball, play trucks in the sand, play pirates on the slide. Somehow, we did all of those things. Jacob hardly missed a beat in that
classroom! I even recall wearing footie
pajamas with Jacob for pajama day. Not
once did anyone say, “I know Jacob has Mito, but can he play?” This was all because this little boy decided
Mito would not define him.
As
Jacob got older, and a bit heavier (62lbs), some of these things became a bit
more difficult. But, we managed. Enter Brittany and the communication
device. She gave Jacob an independence
he never knew, and she gave us the opportunity to get to know this little boy
in a new way! Sure, he occasionally
threw out “Jackass, I don’t like it, I want to go somewhere, playboy”, but…he
sure did make us laugh! This boy was
just as feisty as he was funny. And once
again, Jacob did not let Mito define him.
In his
own little way, Jacob taught me something.
We are not defined by our disease or our physical abilities. We are defined by our strength, our
perseverance, our thirst for life. I
carry this lesson with me each and every day, and I take every opportunity I
can to pass a little Jacob to my boys. Jacob
was the BEST son, grandson, nephew, brother and friend… all because he decided
“Mito does NOT define me.”
---Jacob, I miss you each and every day… my handsome.
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