As I sat in the waiting room of Sara’s Visual Therapy appointment a couple of weeks ago, I put the last stitch in THE QUILT.  Oh yeah, you know the one.  I started it three years ago?  I wanted to cry.  I started this wall hanging when I quit working because Greg told me to get out of the house once a week and take a class or he might have to kill me. Once I started the binding, the entire project came to a screeching halt.  I am terrible at hand work.  You can’t imagine the hours this quilt has sat in therapists waiting rooms, receiving 1 stitch at a time.  Sometimes Kelly and I just cover up with it and watch a movie.  OK…usually Kelly and I just cover up with it and watch a movie.

I knew this last stitch represented change.  After 3 years of working at on it, I knew the fact that I finished it on a Thursday at 5:15 was absolutely no coincidence. I knew in a few short minutes I would walk into Sara’s Visual Therapist’s office and let her know we were leaving.  Leaving the office we’ve been trekking to for a solid year.  Leaving the work we do for 40 minutes a day, several days a week.  Leaving the office that TAUGHT OUR CHILD TO SEE.  Math tutoring has risen to the top of the needs list, and because she seems to see well enough, “eyes” have to move down.  In the Special Needs world, there is no “done”.  There is never a goal of 100%.  And we try hard never to utter the words “grow out of it”, because finish lines are mirages in deserts we may never cross.  I like to think of it as life free of the bell curve.  It can be liberating sometimes…on a good day… and sometimes on a bad day if that day ends with a hot bubble bath and a tall glass of vino.

We shuffle Sara’s plan with great thought, after much conversing with experts, and prayer. And with every change we face the only truth that never moves: there isn’t enough time or money to do everything at once. But even with my skill set in medicine, I feel that with every change, I’m going out on my own.  There is no algorithm for kids like Sara.  I’m surrounded by a team of highly trained experts, but in the end, her plan is entirely up to me.  On the days she’s thriving, I feel like a genius.  On the days she’s falling apart, I feel like I’m screwing up the most important task ever given to me by God.  I’m failing GOD.  And worst than that, some days I feel like I’m failing Sara.  I know that’s not true, but that’s how I feel.

My cousin Eric gave me the best advice last year while at the depths of his own lifelong illness: “Lori, there’s no coming back from burn out.  You can’t put up a reward chart, put some stickers on it, and come back from burn out. Don’t let anyone do that to her.  Even with the best medical professionals, sometimes you have to look them in the eye and just say no.  Enough.  That’s your call to make Mommy.” Sometimes I feel like I’m holding my breath through entire weeks as I set up meetings and call colleagues with more experience.  I see the change coming, I move the pegs around, I open the calendar, I wipe off the dry erase board, and I sketch out the new plan.  I sit down with Sara and start the selling.  THIS is going to be great!  THAT worked (or didn’t), but it doesn’t work anymore, and so we’re going to try THIS!  THIS! might not work, but we should go to THAT PLACE and see!  I feel like the world’s greatest swampland realtor.  There’s not enough candy in the world to make therapy, medicine, and tutoring look fun, but Lordy knows I’ve given it my best shot.  In my free time, I simply try to live inside her head and gauge whether or not we’re pushing her too hard, not hard enough, and if we’re surviving the journey.

So here we go again.  I hugged Ms. Cindy goodbye, wishing I could take her with me, and promised if Sara’s right eye wanders away or her left eye takes over or if she just basically tanks, we’ll come right back.  We’re hoping to return in the spring or summer, crank out some more therapy, and evaluate her vision.

The new plan is actually quite neat: Greg was a math tutor many years ago, and Sara’s school constructed a math tutoring kit for him.  Our dining room and stairway have been turned into Math Central, and there is nothing as qualified as a Dad to turn anything into a game.  Because Sara’s Dyspraxia won’t allow her to connect numbers to quantities, she now does her adding and subtracting by walking up and down our numbered staircase.  We’re hoping the motion of moving up and down will create a memory for quantity using a secondary pathway in her memory.  Her Occupational Therapist loves Greg’s ingenuity, and is anxiously awaiting its results.  At the very least, Sara is finally having some fun with Math (and her Daddy whom she idolizes and adores), which on our scoreboard (remember, no bell curve!) is a total win.

I started that quilt as I quit my job in order to stare at Sara as long as it took to figure her out.  I started that quilt as I quit my job in order to spend more time cuddling with Kelly underneath it.  Now that it’s done, and I’m looking forward, I can only wish this Christmas for more courage, more fabric, and a hardier thumb.  It took me 38 months, but you know what?  That’s me.  That’s my style.  I once overheard the women who taught me to sew talking about my skills when they didn’t realize I was behind them, “Lori is very slow, but she is good.  If you can wait for it, it’s sturdy and accurate.” This is true of my sewing, my cooking, and I’m praying it’s true of my parenting. Godspeed to all of us friends.  May we have the courage to stay if we should, and go if the time has come.  The road ahead is uncertain, but I think I see bright glimmers of light, don’t you? If not, I have a quilt to keep us warm.