I sometimes wonder if this picture will represent our entire lives together: arms around Kelly, eye on Sara.

All children go through growing spurts and funks and “phases” that, as parents, we think might end us.  The “calm” I so aptly practiced flew away from me this week, almost as a reflex.  It’s not a skill I will master in one summer.  Any parent of a special needs child will tell you the “phases” and “funks” are longer, lower, and honestly, darker, than you might anticipate.  They come without warning, leaving us scrambling for what changed in Sara’s Universe.  Is it her schedule?  Her sleep?  Her diet?  Her therapy?  Her last doctor’s visit? Hours upon hours spent in the evenings, Daddy and I stewing, circling back over her last month, trying to pinpoint when the direction of the wind changed, always thinking, in error, that we can change it back again.  5 years of late night meetings hasn’t sharpened our Sara skills in the slightest.

As has happened so many times in her life, she has slipped into a place of anger and defiance, which is a sign that she is hiding something troubling, even from herself.  It’s often buried so deep that even she can’t bring it to a conversational surface.  Her summer has been one, long, cranky day: ballet camp was too “stretchy”; having cousin Avery and Grandma over was too “people-y”, the Magic Tree House Camp she has long looked forward to is “too noisy” (albeit her favorite moments of the summer so far).  We’ve scaled back our activities to a near stand still, to almost no advantage.  I thought surely with a break from the routine of school, a new kitten and a new pool (Sara is truly serene in water), we were set for the summer of amazing.  Life never runs out of surprises does it?

That’s not say there haven’t been real breaks in her somber mood.  The few times we’ve spent with her good friends have been downright bliss.  She seems quite herself in the company of her “gang”, even if transitioning into morning camps and activities has taken an Olympic effort on my part.  Certainly Cyrus is a constant companion who receives non-stop Sara cuddling.  And the weather has finally taken a turn from cold rain to a radiant summer warmth.  This afternoon was our first “real dip” in the pool, as all other attempts have been 10 minutes of blue-lipped jumping.  After 2 hours, I finally pulled the reluctant girls out so I could make a late dinner.

In the past 2 days, I’ve seen our kind, quite happy Sara peek through the clouds.  At dinner tonight, we plowed our way through sweet corn, fried green tomatoes, and Fontina chicken, as if we’d all been on a hunger strike.  The girls, who have nearly driven us to drink with their horrible sleeping this week, both fell quickly into a deep slumber.  And I’m trying to turn my mind from worry: worry that while I had my mind fully fixed on her dyspraxia, I contentedly forgot she  has a non-verbal learning disorder that comes with extraordinary levels of defiance; worry that if I focus too hard on the non-verbal pieces, I’ll drop the visual therapy ball; worry that while her summer curriculum is going smoothly, it won’t be enough to create for a smooth transition back into school; worry that in all the worry, I will lose Kelly altogether.

I know that this too shall pass.  The dark times always do.  Greg is great at reminding me that with each dark place we enter, it’s always brighter than our last time through.  I’m better at being honest with friends and family that while we ARE happy and we ARE fine, there are times we cannot run and go and do.  There are times that we can, and the friends who join us on our adventures have been my lifeline this past month (their spontaneity to pick up and go on the days we are up for fun, and their understanding on the days we must rest, has meant the world to me).  I’m better at explaining that we have limits perhaps others do not, and while I can argue around them all I want, they are what they are (and oh-so-peacefully with our closest of friends, none of these words even need to be spoken). Therapy has non-negotiable commitments.  Just commuting to the endless appointments is almost a part-time job.  And with so much of our life dedicated to Sara’s therapy, we must also carve out time for jam-making and swimming and playing with friends, otherwise, our lives will just be about that one thing.  Not good for anyone, I promise you.  We, like so many families, play this balancing game day after day, just praying our fragile children will thrive under our constant watch.

So perhaps I simply wanted to write the words “it will pass” in order to believe it myself.  Perhaps I’ve grown tired of feeling I am the only Mother who frets over her moody child.  Perhaps I wanted to thank the dear friends and family who have been my sounding board these past few weeks, and especially to Aunt Jenny who showed me how to give Sara her own sense of power over the things that must feel powerless to her.

Your thoughts and prayers are always welcome in this space.  Thank you to you as well…I needed to get these words off my heart tonight.