My Family Is Going to Kick Your Butt

Tomorrow is a really important and pointless day. After dragging my feet for....oh, 18 months or so, we are finally taking Little Bug in to see a pediatric neurologist. A really, really, REALLY good one.

Little Bug's hypotonia is most likely caused by an undiagnosable genetic brain disorder. It could be caused by something more definable, but he's never really shown any other symptoms to clue our doctors in. So, for a long time, we just didn't bother to take him to a neurologist since everything she could tell us we were already doing. All the things he could be diagnosed with are things that can't be "fixed" with medicine. Therapy is the only way to rise above these diseases and syndromes, and heaven knows my family already kills it when it comes to therapy.

But, over the last 6 months, two things have become apparent to us.

1. Little Bug is going to need therapy for a while, both physical and developmental. (This is okay.)
2. Even if it doesn't change anything we do, Little Bug has a right to know as much about himself as possible.

So, tomorrow we will take our beloved son to a really good, but very blunt pediatric neurologist. I have no idea what to expect, but I have been prepared by numerous people for an experience less touchy feely than the average doctor's visit. I've been prepared to advocate for my son, to get a second opinion, and to ultimately not really give a crap about what the neurologist labels my kid.

Cerebral palsy, undiagnosed genetic disease, mitochondrial disease, central core disease, FG syndrome, the list goes on and on and on. I haven't decided yet whether I want to get a concrete diagnosis or not. I worry about my son having a label placed on his head, to carry around like a burden during his school year as teachers look at his file and say "Ohh, poor Little Bug has ABCD. Let's treat him differently." Once you get a diagnosis, there is no going back...ever.

Then I think, maybe the label won't be a burden. Maybe it would be freeing to be able to say "CP, my family is going to kick your butt." Little Bug already has so many unknowns in his life; I think if we can clear up one of them for him, it would be doing him a service. Little Bug will continue to thrive, of that I have no doubt. I just always get nervous when people who might not believe that as readily as I do come into our lives.

I think I can handle anything she tells us, just so long as she tells it to us in the context of hope and support. There is nothing I hate more than someone who tries to put limits on my kid or feel bad for us. Here's hoping the well respected Dr. K is a little bit impressed by polite baby signs, silly smiles, and unnatural and criminal cuteness.