Reality Check

I don't often write posts like the one I'm about to write very often. In fact, long periods of "silence" from me on the blogging front usually signal challenging times. Not writing at times like these is part of a three prong philosophy:

• giving a voice to difficulties puts a focus right where it will only make hard things harder 
• being optimistic puts energy on what's so great about life which is intended to then create an avalanche affect of goodness (I'll admit, this can also be a form of denial; "blanketing" that which must not be named)
• doing what we can with what we have by looking for using various resources (usually medically related) give us some answers and guidance with our non-typical children

Though these challenging and difficult situations often create frustration, anger, anxiety and confusion the true emotion underlying them all is heartbreak. This extends to all parents, not just parents of children with disabilities or unique struggles. All parents have their hearts pierced from time to time as they watch their children navigate growth, development, and milestones. We hurt when they're left out, when they "lose," and when they're sick. We even find ourselves wishing we could trade places with them at times to absorb their pain and shield them from misery. I have never felt the need to do that more than I do tonight, right now in this moment.  

Porter watched himself on a "video" that was taken this afternoon. How that situation came about would have been great material for a more humorous blog, but the result was anything but. Long story short, he gained a whole new perspective of himself. "I thought I was a normal boy. Why do I do that? See, there. I keep doing it?" He's referring to his "flapping." He's done it for as long as I can remember. It happens a lot when he's excited, overstimulated, emotional, etc... I told him that he does it all the time and asked if he really didn't know he was doing it. He said he really didn't, and I believe him. "I wish I was a normal boy." "Why don't my muscles work?" "What's wrong with my throat?" "I'm so disappointed in myself." "My future is ruined." "I don't like me."
My pain for his pain is tearing up my heart.

This is my parental reality. We've done a lot for Porter and he's an amazing, resilient, and persistent kid. It is definitely not normal to hear him talking this way. I am his parent, protector, and guardian. In many instances I know I could have and should have done more, but we can only move forward and look toward the future.  So now, instead of avoiding the negative and sugar coating with the positive, I will direct my energies to prong three: pursuing answers and resources that will help Porter be the person he wants to be. 

Just a few minutes ago, after a pep talk from his dad, we hear, "I love you dad. I love you mom. I'm not going to give up." And neither am I (though I think I am going to cry myself to sleep, just this once).