Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘worry

The Package

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The Package of forms from the hospital is just as heavy as last time.  Its bulk doesn’t comfort me, though they are blank, I’m scared to complete them.  I quickly hide them in a drawer.  It loiters in the drawer, unopened, for three months.  I know it is there, but I will myself to ignore it.  Finally, one week before the appointment, I have to open it, can put it off no longer.  Lucky that I did, there are forms for her teacher to complete, and there is only one day remaining before Spring Break.  I quickly tuck the rest of them away.

We’ve completed these same forms before.  That time there was a sense of urgency.  In my desperation to understand, I pushed away the overwhelming thought of what my answers would mean, and just responded to the questions posed about my girl’s development.  Just questions, they don’t define her.  Then those forms were evaluated, and more evaluations took place, and a label came which still doesn’t define her, but altered the course of our lives nonetheless.  That label brought answers, and understanding.  It brought recommendations for therapies that we just couldn’t afford.

It also gave us a new starting point.  A ground zero from which to chart her progress.  And this is the part that scares me.   The first time around, we compared her development with her peers, now we compare her to her younger self.  Yes, there has been progress, but has there been 20 months of progress?  In our game of snakes and ladders, are we moving forward?  I can’t help but reflect that had we been able to follow their guidance, there would have been much more of that elusive progress.  The feeling as familiar as the package of forms: Guilt.

Guilt is debilitating.  It leaves me prone.  I must fight it, because she needs me to keep moving forward so that she can too.  We do the best that we can, with what we have.  That maxim motivates me.   My armor.  I size up my enemy again: Guilt.  Nothing compared to the opponents my girl faces every day.  The best that I can do right now, is simply to fill out a few forms.  It isn’t easy for me, but like my girl, I try my best.  Time to open that drawer.

I did open that drawer on Tuesday.  There was no filling out the forms though.  Every time my attention was elsewhere, a pair of supervillains intent on destroying the house, my patience, each other, the world took over.  Eventually when peace was restored with bedtime, I opened up the envelope again, and got to work.  I don’t remember what answers I gave the first time around, but I suspect many things remain the same.

But there are so many things those forms don’t measure.  A burgeoning sibling relationship, the ability to work out what she needs even when her system is threatened, the capacity to make friends, flexibility in the face of disappointment.  So much more than I’d have hoped for the last time.  I just need to remember that for today.  I’ve been trying since the early hours of the morning.  I have the same worry and guilt as ever, but now mixed with pride and hope.  The heady cocktail of a Spectrummy Mummy doing the best I can, with everything I have.  Just like any other day.

Written by Spectrummy Mummy

April 21, 2011 at 5:38 am