WE COULD ALL USE A CASE OF THE JACOBS

I simply have to post nurse Gemma's post about Jacob that she wrote for Miracles for Mito as part of raising Mitochondrial Awareness this week. Enjoy!

I remember it like it was yesterday.  In February of 2010, my nursing supervisor called to tell me about a new case I would be working.  She began to rattle off the basics: age, address, parents, etc…  It wasn’t until she got into the “why Jacob needed nursing” portion of our conversation that I started to get nervous.  She divulged that this little boy had a mitochondrial disorder.  “Mito what?!”  She continued to explain Jacob’s needs to me.  As I heard pneumonia, seizures, suction, compromised immune system, IV antibiotics, my head started to spin and all I could think was, “How can a new grad nurse like myself take care of this child?” 

 

It didn’t stop there.  My supervisor went on to tell me that Jacob was quite possibly the most complex patient the agency had.  He was a part of a hospice program, and I would need to be comfortable with end-of-life care if it got to that point.  Trying hard not to let my voice give away how nervous I was about this new case, I simply said “ok” and asked what day I needed to be there.  I had convinced myself that whatever kind of care this little boy needed, I would provide it; and that despite being fresh out of nursing school, I would learn quickly. 

 
Several dance parties, books, walks, crafts, and school days later, I can joyfully boast that I’m still Jacob’s nurse!  I have learned about Mitochondrial disorder, and I have met several families affected by this monster of a disease.  Most rewardingly, I’ve become a part of Jacob’s life.  I’ve learned how to appreciate every single day this little man has to offer us.  Jacob has very easily become a part of family dinner conversations, and it’s no secret that he’s my “handsome”.  My fiancé recently said, “There’s just no competing with Jacob.  He has you wrapped around his finger!”   I certainly didn’t argue with him.

Jacob’s mitochondrial disorder may put limitations on what he can do physically, but it has not put a limitation on the spirit and light this little boy carries.  Despite how difficult it may be, he makes an effort to smile, vocalize, and enjoy life’s little offerings.  I’ve thought about the word used to best describe Jacob, and the one that keeps coming to mind is “contagious”.  Jacob is contagious.  No matter how crappy my day may be, I can come into work, see that smile, and catch a case of “The Jacobs”. 

His little friends and teachers at school may not see it, but I think they catch “The Jacobs” every time they see him.  There’s nothing I enjoy more than watching these unsuspecting victims catch it.  It starts in their toes; they point their feet in Jacob’s direction and head on over.  They raise their hands, wiggle their fingers, and wave hello.  You know they’ve caught it when the corners of their mouths turn up into a never-ending smile.  The little ones get the wiggles and want to show and tell him absolutely everything, and the adults can’t quite turn away.  It doesn’t just happen at school.  It happens everywhere we go. 

Words can’t even begin to express the way this little boy has woven his way into my heart.  What I can tell you is that I wouldn’t change it for the world.  I firmly believe that things happen for a reason.  I’ve always told myself that Jacob needed me, and that’s why we were paired together.  It wasn’t until I was sitting down with a friend the other night, that I realized my answer had changed.  My friend asked, “How do you go to work everyday and take care of this little boy, knowing what you know about his disease?” I simply replied, “Because Jacob needs me.”  It wasn’t until I laid down for bed that night that I realized that statement wasn’t true.  Jacob doesn’t need me…..I need Jacob. 

So, until Maria and Joakim kick me out of their house (I’ve become pretty good at using the steam cleaner, so hopefully that’s bought me some time), I will continue to come to work, looking forward to catching my daily dose of “The Jacobs”.