I Have But Two Faces

"One for the world,
One for God, save me.
I cannot cry for the shoulder cries more..."

(and I cut the lyrics off there because the context falls off the cliff at that point)

These are part of the chorus of "The Poet and the Pendulum" by Finnish symphonic metal band Nightwish. The song itself doesn't really apply to this entry, but I wanted to shoehorn this specific snippet into this post, how we put forth two appearances, depending on the situation.

And how one of those appearances just gets exhausting after a time to maintain, but we must.

Henry is, of course, over a year old at this point.  As such, there are certain expectations for a kid of that age, in terms of physical, social, emotional, and mental development.  But with Fragile X or autism or any other developmental disability, the so-called "regular time-tables" have to be thrown out, and improvisation becomes the name of the game.

And with that said, it sometimes becomes difficult to put up the plastic smiles in response to the myriad of "is he crawling?  Is he walking?  Is he talking?"  A few months ago, it might have been "typical" to say "no," and expect that it's just a delay of "each kid is different."  But at some point, certain milestones come and go, and with no visible progress, others grow concerned.

Well, this is something that we already know.  We know that Henry's delayed, and as such, we've already taken steps to get the help that both he and we will need.  But to explain that to others who aren't as intimately familiar with the situation can get tiring.

On the one hand, we want to explain why Henry isn't quite at expected milestones but on the other, we also know that it might be a bit much information to digest at any given time if one isn't prepared for it.  And in a casual, social situation, one is not quite at a sitting-down-on-the-couch-with-a-look-of-genuine-concern moment.

So we play off those questions with a "yeah, he's doing fine" or "yep, not yet, but he'll get there," all the while wondering when our resolve will crack and the facade crumbles.

We know to celebrate and encourage every milestone he does achieve, no matter how seemingly insignificant.  For example, his crawling is starting to get more defined now, as he's gradually alternating his legs rather than exclusively scooting across the floor like a baby sea turtle struggling to reach the ocean.  But his upper body strength isn't quite up to the task yet.

It's hard to avoid comparing to his classmates, who are already walking and have been for months now, by this point in their development.

So we have these two faces.  One to show the world that everything is peachy-keen and totally under control, and the other we hold for ourselves when we have the luxury of letting loose our frustrations and confusion, processes that I know intellectually are natural and necessary....but still hard to reconcile nonetheless.