Sara has graduated from Occupational Therapy.  I thought we’d be thrilled.  I thought I would throw a party and we’d race to Disney.  I thought…I thought magical gnomes would drop from the sky, the air would turn to glitter, and tiaras made of rubies would appear on our heads, christening us as Special Needs Survivors.

It doesn’t work that way.

Instead, Greg, her OT, and I, decided it was simply time to stop.  She has made huge gains in 18 months of therapy.  She finally reached “in the average range” on some primary goals.  Her gross motor skills have vastly improved.  She can almost locate herself in space.  She can write, not fast, but legibly.  And yet, I’m left with this vacant feeling.  Her pencil grip remains problematic.  Her minor goals were “close”, but not complete.  Her upper body remains weak, but improved.  While I know reaching some kind of 100% finish line is utterly ridiculous, apparently my heart was wishing for a completed check off list.  She’s worked so hard.  I’ve worked so hard.  It was all so hard.  There should be a test with a big sticker and a smiley face.

Her challenges can’t be wiped away, even with the greatest healthcare in the world. It doesn’t work that way.

Today I faced the questions from loving family members who want to know when she will outgrow all of this.  I always feel like I’m being stabbed by my own emotions when I answer: she won’t.  It might take her an extra year to learn cursive handwriting.  Probably an extra year to learn how to drive.  She’ll do best if she’s engaged in activities which cause her to do weight-bearing exercises while pushing her body through space.  We should steer clear of competitive sports.  We should help her learn to anticipate the extra time any motion-based activity will take her to grasp.  And all the while, we should celebrate that she can do so many of the things she couldn’t do before.  The really important things, like realize her body has 2 sides.  Write.  Tell left from right.  Use both of her eyes at the same time. We have an arsenal of techniques to accommodate the sensory problems that hinder her from living in her own skin.  I should feel like shouting from a mountain top.  HEY WORLD! MY KID HAS NOISE CANCELLING HEADPHONES AND CUES TO LET ME KNOW WHEN SHE’S FEELING OVERSTIMULATED AND I WAS ABLE TO MASSAGE HER SKIN AND PRESS HER JOINTS IN FRONT OF A ROOMFUL OF PEOPLE WAITING ON HER TO JOIN ACTING CAMP WHILE SHE MELTED IN A CORNER!  ISN’T THIS SO AWESOME?!

I don’t feel like shouting. It doesn’t work that way.

In a private moment with Greg I admitted that things weren’t feeling as I imagined.  I’m worried she’ll crump.  I’m worried I can’t navigate her through the landscape of life without an Occupational Therapist at my side.  I’m worried she’ll lose ground and we’ll have to start over.  He gently told me she might just fall apart.  In fact, at some point, it’s probably going to happen.  We might have to go back to OT.  We’re finally comfortable in the rhythm of “it’s always something” with Sara.  We’re navigating the “falling apart” without the world falling apart. And we’ve spent months coming to the realization that it’s time for her to more organically evolve.  It’s time for her to feel more normal.  We’ll keep the meds and the Tutor, and lose everything else, and let this kid just be for a change. We agreed.

We agreed there are no guarantees.  It doesn’t work that way.

Still, the feeling remains that the unfinished finish line isn’t the party it should be.  Visual Therapy felt the same way.  There was simply a decision of, “Close enough.  Exhausted.  Sara gave it one helluva an effort.  She has measurably improved.”   While I ruminated over these thoughts at the stove this afternoon, I got to thinking maybe our journey isn’t all that different from everyone else.  Does any parent get a completed check off list with a big red “Excellent!  Great effort!” on the top?  What parent looks at their child and says, “Bravo!  You are done!  Challenges erased! Life should be a cake walk from here kiddo!” I’m laughing just reading this asinine line of thought.  Nobody gets some movie-script version of a life where all the issues are summed up right before the credits roll. Nobody.  It doesn’t work that way, not for us, not for anyone.  Parenting kids of all flavors is one big non-finish line, run on a track full of land mines, and short on guarantees. See?  We’re on our way to normal already.  Whatever that means.

Wisdom Comes Suddenly.