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.
Love you always,