Tuesday, April 12, 2011
But I can't fix this. I can't, and I am so angry. The rage I feel is all powerful and it could eat me alive if I let it. What was once diagnosed as torticollis, a simple not-so-threatening neck tilt, has now turned into a full blown rare neurological movement disorder. My Ila. My beautiful happy, determined, funny, head strong Ila has a movement disorder that has perplexed my pediatrician and a well-known pediatric neurologist at UVM.
And you know what makes this worse?? What makes this whole thing worse is that the doctor that could possibly diagnose Ila can't see her until July. July? Really? July. Really? Really? I don't know about anyone else but the thought of not knowing definitively until July what is exactly wrong with my daughter is just placing agony on top of excruciating agony. How can a parent move forward. How can I make a plan to get her the help that she so desperately needs if I can't get answers. I can't fix this, but I need to do something. Without knowledge or a label where do I begin?
(If you aren't in the mood for a stark-raving mad rant, this is where I'd get off this blog ride if I were you. Otherwise buckle your seat belts.)
To the doctors of the world: Please know this: if you are in the business of giving really bad news to parents about their children you must be cognizant that even the brightest of humans need to process information before they can begin to ask pertinent questions, before they can begin evaluating if they want specific procedures, before they can minimally advocate for their beloved child. And yet....And yet...after the appointment where you drop a bomb in the parents' lap, you are impossible to reach. When we finally wrap our minds around what you have said to us, we of course have questions. We begin to rethink agreeing with you on this or that. We become this rolling, smoking steam locomotive that barrels down the advocacy track. And yet...and yet...you are inexplicably impossible to connect with. We talk to secretaries and nurses and voice mail machines. We email and pray and feel the deafening silence of the unringing phone, of the empty email box as if it were a heart attack. Each day that slips by without answers, without reassurance, without tests and most of all without plans is a day that we feel we lose precious time that we could have been using to help our child someway, somehow. Dear doctors of the world, busy as you are, it is imperative that you take a moment to realize that these patients of yours are the daughters and sons of parents who want to fix what ails them. Without you, without your availability--we can't. I can't. I can't fix it.
OK, so after rereading that rant I may have generalized a tad. Not all doctors, of course, are that way. Why just this evening Ila's sweet pediatrician called me to answer some of my more pressing questions, but ONLY because the "specialists" didn't return phone calls, didn't answer emails. Does there REALLY have to be a correlation between the amount of knowledge a physician has and a lack of availability? It seems to me that it SHOULD be the other way around. The more a doctor knows the more he or she makes herself available to the neediest patients and their families.
The best doctors available for the hardest cases in the quickest possible time-in a perfect world this is how it'd be. But unfortunately the world is far from perfect. It is a place where beautiful little girls face daunting challenges. It is a place where parents who live solely to give their children what they need run into brick wall after brick wall when trying to do so. It is a place where sometimes, it seems that sadness reigns supreme. The world is far from perfect. In fact, it often seems to be broken, and...I can't fix it.