Tuesday, February 1, 2011
No, not that ‘F’ word! And not “feminist” either (as you many of you know I have tedious amounts to say on that subject as well). I’m talking about the future, that ‘F’ word. The ‘F’ word that ranks up there with the four letter version for parents of special needs children as noted by one of my favorite fellow bloggers at Love That Max (http://www.lovethatmax.com/2011/01/f-word-for-parents-of-kids-with-special.html ).
Until recently I’ve been stuck in the past (admittedly a bit too much) with occasional forays into the present. I keep that ‘F’ word cushioned in the safe billows of intellectual cotton in the back of my brain that I call “someday”. This ‘F’ word is dangerous and unwieldy and I rarely let it out to play. It is prone to sending me to dark places, scary places, where I can’t find my breath or stop my mind from racing and asking for the impossible: to know how it will all turn out, to know that if it will be okay.
Instead we dole out our future in tiny portions, “we’ll know more at the next appointment”, “we’ll talk about it at her Individualized Family Service Plan (IFSP) meeting”, “things will be different in the spring”. Always, the future is there looming, but we cut it down into small digestible chunks and have stopped devouring our once spacious overflowing dreams.
Why? I mean, let’s take a quick look. Jack is approaching kindergarten, has made some friends at pre-school, and will ask “why” regardless of subject, from the abstract (death) or the concrete (sunshine’s effect on icicles) till I’m forced to either lie or distract him with something shiny.
Gus is well… Gus. But despite his need to hoard chapstick, credit cards, and sippy cups and his new obsession with holding two of the same item in each hand at all times is at least starting to slow down a bit and use his hands more gently. Sure, he spends most his day in a weird speedo like suit to help his proprioception but he rocks the baby bondage look. And, despite his lengthy stays in time-out, he can dance like nobody’s business (seriously, the kid was born knowing how to do jazz hands) and has come really close to growing out that horrible “Village of the Damned” haircut I gave him.
And Greta: Greta can walk! Recently I learned that her gait is more problematic than we thought and we really need to do better focusing on her hip and knee involvement. But honestly, I am still just over the moon that she can walk! Though her personality may be confused with the Queen of Hearts from Alice in Wonderland lately (seriously, I’m pretty sure if she could she would off everyone’s head and she has the whole family working to paint her roses red to avoid her wrath most days) but we can chalk that up to her reaching the angry toddler phase of life early and thus call her advanced!
So why the fear of the future? If I were to be so brash I’d say our future is so bright we should all be wearing shades.
Well for one thing “wait and see” is the party line of all physicians everywhere when it comes to CP, or even to Gus’s immerging issues. At first it was frustrating to hear, I remember angry conversations in the car following appointments where we lamented, “wait and see, what good is that going to do?! We want answers, statistics, something”. But now, “wait and see” has become like a lullaby. “Wait and see” is the verbal equivalent of a valium, seducing us into a false sense that waiting and seeing is a good idea, heck, even something we are capable of doing. Maybe we should just “wait and see” our way right through till retirement.
Of course that just isn’t possible, and of course the ‘F’ word is still always on our minds, we just don’t speak about it anymore. We aren’t stupid, we know right now that Greta can pass as a clumsy toddler to most onlookers (sans braces that is) but that unless time stops moving forward soon she will be too old to be a clumsy toddler and difference and disability will move from the invisible to the visible, from the private to the public. We aren’t ready for that.
The ‘F’ word feels like we’re tempting the same fates that brought us to this place. We whisper conversations about the future in the vaguest of terms, knowing that naming our plans is like inviting ruin. We have been burned before; we can’t forget what it felt like to talk about the future on our back porch while I was hugely pregnant with the twins and Jack picked us flowers compared to how it feels now. We cannot invite the pain of that comparison, at least not yet, and without the future to talk about anymore, it is kind of quiet.
So Greta, I will confess I spent a great deal of time thinking about the future- most of my life in fact. I couldn’t wait to leave high school, to graduate college, to get my master’s degree, to get a job, to get my PhD, to buy a house, to have babies, to do, well, everything I wanted to do! While all that time spent waiting for the future to hurry up and arrive wasn’t necessarily a waste I do wish I had occasionally slowed down and appreciated the present. But to be honest I just wasn’t made that way and don’t think I could have changed if I wanted to. So are you going to push towards the future always wanting to know “what next” or are you going to stop and smell the roses day by day, I guess we’ll have to “wait and see”.