To the bottom and back up again

It's been over a year since I posted here.  It's been a hell of a year and I don't really know where to start.  I ended with flatrock25k which was not a good race for me, not one I'm proud of anyway.  Yes I did it, yes it totally sucked, yes I signed up again at the first opportunity (I'm awesomely crazy like that).  Then there was some family drama around the holidays that started a downward spiral and a trip through the bell jar.  First J's OT dismissed him due to a personality conflict, and while I agree with the decision, it still hurt to have someone that's helping your kid tell you they can't help anymore.  That and the family drama happened the same week I had to schedule J's MRI (to check for brain malformations, shrinkage, and possibly but unlikely tumors).  Which is more terrifying to think about than I can possibly put into words.  Needless to say I was an emotional mess.  At the start of new year my running really became an outlet for the worry and stress which in a way is a good thing.  The stress is not good, but having an outlet was.  My mileage was ticking up and up, my weight was going down.  All good things...except I wasn't feeling better.  I wasn't feeling like me. I felt I had a mask on.  I laughed when expected and then went stone faced when nobody was looking because being actually happy didn't happen anymore.  I was tired all the time, like I can't get out of my chair to get the kids milk tired.  I needed help.

After talking to a friend I decided it was time to talk to my doctor.  Meds were prescribed, the fog lifted, and I found me again (mostly).  The fog is still there and still visits from time to time. Some days it feels like it's just waiting for an opportunity to come steal my happy again.  Like a hungry dementor from Harry Potter following me around.  It wasn't pretty and some days it still isn't.

Thankfully J's MRI found nothing scary.  The Neurologist ordered another 6 months later.  It showed no change.  The Neurologist agreed with the dyspraxia diagnosis.  Then we had him evaluated by a Neuro-Psychologist. She seconded dyspraxia/DCD (DCD = Developmental Coordintation Disorder.  It's the current US medical term for dyspraxia, but they can both be used) and Sensory Processing Disorder.  Then she added ADHD, a phonological pronunciation disorder, and dyslexia (the only real surprise is the pronunciation disorder).  All of this was very helpful to J's team at school, which thankfully continues to be amazing.

Overall, not a bad end to really unpleasant year.  There's so much more that happened and I wish I'd kept up the blog better, but we're here now.  Moving forward.

Being told your kid has special needs...

... regardless of the level of their special needs, is the hardest thing I've ever experienced.  Prior to that all the oddities were just quirks, he was his version of normal and would be okay or grow out of it.   Now though...it's like mourning the loss of something intangible.  Mourning the loss of normal.  No, we never really had normal and technically nothing has changed, but it has changed.  These things are not just quirks of his personality.  They are neurological disorders.  Neurological disorders that will last his entire life.  

Could it be worse?  YES, it could be so much worse, but that doesn't take away the feelings of hurt and sadness over the loss of the life you thought this child would have.  The loss of the things you'd get to do with them.  This fact also doesn't make it okay that you now have to do therapy with them every.single.day just so they can have a decent day (which for the record effing sucks and it's okay to think it effing sucks).  

So...my suggestions to people who have a friend going through this.  Don't dismiss their feelings whatever they are.  Don't tell them their kid will be fine.  Don't say things like "Oh, my kid(s) do that too.  It's normal", "But he's just a kid.  I don't see XYZ disorder so he must be fine" or "Boy there's a diagnosis for everything these days". DON'T tell them it could be worse.  WE KNOW.  Just give them an open place to talk, scream, cry, whatever and above all else don't make them feel guilty or wrong for however they are feeling.  They have enough guilt as it is.