The Epiphany

I'm going to leave my Facebook cover photo up for a little bit longer, even after today, because while a bunch of you know what's going on, I know that many, many others don't (and no fault being placed; it's a matter of who we've chosen to tell and such).

Both of our kids are diagnosed as having full-mutation Fragile X Syndrome.  Little Girl, the unborn one, we found out first.  I just got verbal confirmation today for Henry, although we already knew in the back of our minds.

While correlation does not always equal causation and vice-versa, the simplest way to explain it is that FXS is the leading GENETIC cause of autism-like characteristics or autism itself (and of course, not all autism has a genetic root).  And like with autism being a spectrum disorder, there is no way to predict where on the FXS spectrum the kids will be -- both Henry and Little Girl could exhibit little to no signs of disability or could require a lot of assistance or somewhere in between.  We just don't know and can't predict.

The point is that we and the kids are going to have a tough road ahead of us.  We will get through it, because I'm going to fight like hell for these kids.  This is why I'm also leaving my profile pic from Warrior Dash up to go along with the cover photo.

I am too metal to let this go down without a fight.

But I'm writing all of this not to beg for sympathy or other social media sanctimonious melodrama, but as edification.  By speaking it out loud, I acknowledge its existence, determine a preliminary plan of action, and prevent myself from hiding in denial.

It's out there now.  I can't pretend that it doesn't exist, which would ultimately do the kids a disservice.

And if Henry is this cute now and I am utterly disarmed by the boy, then I can't imagine how my spirit will melt once Little Girl and I make eye contact.

And then the both of them in alliance against me....oh, take the lighter, the blowtorch, the saws-all, and the car keys now.  You win.  No, in fact, I'll just GO to Home Depot and BUY a saws-all since we don't already have one.  I lose.  I get it.

No, I write this for myself.  I can't backtrack now.  I owe the kids this much if not more.