Thankful

So I've discovered something since starting this project – it’s a whole lot easier to write what you think when you don’t actually believe anyone’s going to read it. That’s what happened in the first two posts. The minute I figured out people were REALLY reading this – STAGE FRIGHT! Or we could just claim I’ve been busy, REALLY busy.

First, let's have some completely unnecessary cuteness.  We've had these two for three months now and it feels like they've always been here. Meet Snap and Crackle:

I read this yesterday and it made me think about the reality of our lives and how bad we really DON’T have it. Reason 1 to be thankful:  My children are healthy – no one’s in the hospital or even the doctor’s office today. They are able to laugh and play and enjoy being kids, and for that I am thankful. I made the comment in a conversation with my niece a couple of months ago that “day-to-day life is good but big-picture life kinda sucks.”  I've had time since to re-think that. Is the future unknown?  Yes, but so is everyone’s. Sure, we have some scary gray clouds on the horizon - but there's always the chance they could blow away.  I've had renewed hope in the past couple of days that everything’s going to work out. I have no real basis for it; it’s very possible that it’s just a good case of holiday cheer run amok. But I’m going to enjoy it while it lasts.

Reason 2: Today I start vacation from work – two weeks to remember how to be a 24-7 mom. This may be the single best thing (after the regular paycheck of course) about my job – they shut down at Christmas. 

Merry Christmas Everyone!

It Looks Better That Way

A small window into our lives:

 A couple of nights ago I sat down with the laptop and discovered that the desktop display was now turned sideways.  

Just 5 more minutes Mom.

Me (showing Robert this laptop): "WHAT did he do?"   

Robert: "Um, no idea."
            Me: "How do I fix it."  (Tap, tap, tap on the keyboard) 

Robert: "ABSOLUTELY no idea. Do we still have the instruction manual?" 

Me (growing sense of panic here): "Joshua, WHAT DID YOU DO?"  

Joshua comes running over and glances at the screen. "I changed it." 

Me: "I can see you changed it. WHY?"  

Joshua: "Wanted to." 

Me: "Any idea how to change it BACK?" 

Joshua leans over, pushes a few button and glares at me. "Like that. Looked better the other way." 

And he runs off.  Robert and I are left looking at each other, shaking our heads. Sure enough, the screen was back to normal. Abigail is sitting on the floor, watching all of us, soaking everything in - probably wondering when it's going to be HER turn to push the buttons.

 Here’s the problem:  while I’m shocked at what just happened, I really shouldn't be – because he’s brilliant, because his brain works in ways that I can never imagine and the reality is that I just need to catch up. We get that question all of the time, “You know he’s brilliant, right?” I love it, because it almost always comes on the heels of my little man doing something completely NOT age appropriate – and the speaker is astonished that it has occurred to him to unplug/ take apart/ modify whatever electric gadget has caught his eye for that moment. I hate it, because it seems that the only times he is readily given credit for being smart is when he does something he shouldn't be doing. We keep joking that he’s probably going to grow up to be some type of engineer – the more pieces and parts the better. Right now he says he wants to be a bus driver and "Go 60, always go 60." It’ll be interesting to see what happens.

10/11/2013

             I’m not a “blogger” but this seemed like it might be the best way to keep people updated on what’s going on in our lives. Yesterday was hard. We took Joshua to the Children’s Hospital in Augusta and came away with his “official” Muscular Dystrophy diagnosis. While we knew it was coming, there was still a tiny glimmer of hope that maybe the doctors were wrong, maybe it was something else. Nope, and that sucks.

            The timing couldn't have been better, in that it continues our family’s recent history of getting really bad news in October:

           10/2010 – Congratulations, you’re pregnant – but there’s no way the baby’s going to survive. (Thankfully, Abigail is proof that they were wrong.)

           10/2011 – That hernia we were going to fix on your baby? Yea, that was actually a tumor. (Thankfully, it was benign.)

           10/2012 – Joshua was diagnosed with Autism.

           10/2013 – Joshua is diagnosed with Muscular Dystrophy.

           10/2014 – You’ll understand if I just pretend October doesn't exist next year. September will be getting four extra weeks and those special people I know with birthdays – please understand if I claim you were born on September 59^th.

           Usually I’m the person trying to put a happy face on everything, trying to find the positive in each situation. A lot of people find that particular trait annoying – it’s just who I am. But I’m having a hard time finding the happy in this one. The reality is that this new label doesn't actually change anything – it just changes how we view EVERYTHING. Overnight our approach has shifted from “he just needs more practice and he’ll get it” to “OK, maybe he actually CAN’T do this.” This shift has been involuntary and when I realized what I was doing, I couldn't help getting angry.  Joshua’s still the same little boy, still curious, still brilliant, and still incredibly lovable with dimples that melt my heart even when I’m ready to scream. Now he just has a new label. It’s our job to make sure that this label doesn't hurt his chances to be a happy kid. I haven’t completely figured that one out yet.