Innocence.

Today has been a rough day, and I come off of the heels of a rough weekend, and a rough several weeks.  Earlier today, while riding in the car, I stared blankly out of the window – deep in thought.  As my eyes drifted back into focus I caught glimpse of a little girl staring back at me out of the window of a school bus.  She stuck out her tongue and made a ridiculous face at me.  I just stared back blankly.

I often envy others who seem free from cares.  Typically this is in the context of studying for medical school.  I will gaze out of the window of a coffee shop and see a group of college students trekking down the street just having a blast, not a care in the world.  I am embarrassed to admit it, but when I am really in the thick of things at school I want to wring their necks.  I envy their freedom to do what they want and their lack of responsibility.  Of course I chose my path, and I realize how irrational these thoughts are, but it is amazing what 12 hours of straight coffee and studying will do to even the sanest person (not that I am sane).

Today this little girl made me feel something entirely different.  She made me wish for my innocence again.  She made me want to forget how terribly hard life can be.  I don’t blame children for their innocence.  Rather I want to bottle it up and take a drink when I really feel overwhelmed.  I just wish for the days when I didn’t know how difficult things really are. 

My mom has taken another turn for the worse.  I have watched as the system has continuously failed my family as we try to navigate the ins and outs of her care.  She is a unique patient, I get it, but she is a person nonetheless.  She has a story, a pathway, a tragic plunge into the darkness that has now overtaken her.  She is scared and tired and alone in her mind.  I am left to be her storyteller to anyone who will listen to me. 

The problems I am facing lie with communication, or lack thereof.  Isn’t that always the case?  I feel alone trying to help her survive what seems to be an endless battle with medications, and nurses, and EMTs, and social workers, and probably worst of all, doctors.  It is like the game of telephone that you play when you are young.  The more she is shipped around.   The more people who get involved in her care (more accurately, lack of care) the more the story changes.  In this litigious society we live in, no one wants to take the blame when I catch their mistakes and oversight, and certainly no one wants to seem neglectful.  No one wants to seem too busy to take the time to get to know her, to get to know me.  But very few people have. 

In med school we are taught from physician lecturers to care for the caregiver, to take the burden off of them whenever possible.  Let them know it isn’t their fault, that they shouldn’t feel guilty or sad, and that they aren’t alone. 

Only once in the last several years, yesterday in the ER, did I feel complete support from someone in the healthcare field.  An EMT held me in her arms and just told me how very sorry she was and how hard this all must be.  And I wept.  I wept for the realization from a medical professional that this is just not fair.  I wept to know that SOMEONE noticed just how hard this is and just how scared my mother and I are.  I wept because that sort of embrace should be the norm, not the exception.

I am on a plane right now to California.  I reluctantly left with my mom still in limbo with her care moving forward.  I need this time away to think and reflect.  There is one thing I do know, with loss of innocence comes a gain of perspective, and for me a burning desire to make things right.  My mother’s story will be told and she will be comfortable, safe, and respected if it is the very last thing I do.