hope

I remember the year that opening gifts made my daughter weep.

She stood in front of me, just there, tight blond curls falling haphazardly around her ears, belly pudging out the shirt of her Christmas pajamas, holding a silvery gift.  At 3, she still didn’t understand our expectant faces, or even what made toys fun, for that matter.  New to her autism diagnosis, we still gripped the Christmas magic so tightly our fingers hurt.  It took me ten minutes just to convince her to stand in front of me and another ten to successfully convey that I wanted her to tear the neat foil paper.

Gently, I wrapped my mom fingers around her baby ones.  Hand-over-hand.  It’s one of the first methods we learn when our children can neither speak nor understand.  The few words Riley had at the time were the wrong ones; we owned a house full of mislabeled things.  Together, we pulled slowly at the paper and it gave, a tiny corner ripping free.  I did not know then that my daughter had hypersensitive hearing, that the sound wounded her, that she felt torn asunder, like the paper.  She wailed, tears rolling wet over her chubby cheeks, down her tender chin.  But she has always been a child who wants to please.  She was then, even in her most vulnerable year.

I let go of her hand, and my heart broke.

None of my eager expectations for Christmas could convince me to torture my daughter.  Dumbfounded, I sat back.  What could be so tragic about opening a present?  Every time, the gift arises from something torn.

“It’s okay,” I’d said, softly, swallowing, feeling the sore gully in my throat.

But three-year-old Riley kept tearing the paper.  Blinking through her tears, she tore tiny piece after tiny piece off the package.  Destroyed wrapping drifted to the carpet like dead leaves.  She lifted her hand, squeezing her baby fingers open and closed the way she did when we “waved” goodbye to friends.  Waving also had been her mystery.  I put a hand against her little back, trying to understand.  I had no idea then why it hurt her so to open that gift.  Now, knowing her as I do, I think it defied her since of order to do such a thing to such a pretty box.  And I also think she’d yet to figure out that something still more precious lay hidden within, though that was the year she discovered the object of effort.

The holidays at our house have never quite been the closing scene of a Hallmark movie.  I have an idea that they never have been at your house either.  In fact, it’s often felt to me as though an ugly force sets out to dismantle every ounce of warmth and glittery joy I spin through my weary, determined fingers.  Maybe it’s time we just admit that some things about living every day are just hard.  Thanksgiving and Christmas have always been my favorite holidays, and I attribute much of that affection to the efforts my parents made to wrap us snug with family and sprinkle our days with sweetness.  From the beginning of my marriage and the first days of family, I set out to offer my own that same gift.  So, for a while after autism, diabetes, and epilepsy came to stay, the holidays brought me certain gasps of grief I kept carefully wrapped and tucked away.

I remember the year Adam opened one gift and then flew into a rage, beating his head against the wall because we wanted him to stay downstairs and be with us.  “NO,” I shouted, the frustrated sigh exploding into a cry on my lips.  I wrapped my arms around his anger, forcing him to sit.  He screamed and wept in my arms.  And then I remember also another year, a Christmas when my tow-headed boy went ghostly pale in the corner and curled into a ball, unable to tell us that his blood sugar had plummeted dangerously, threateningly low.

There was the year Zoe cried all the way to church on Christmas Sunday because we wouldn’t let her eat the lollipop that was in her stocking, but that doesn’t even begin to touch the year she dissolved into rocking tears during Christmas lunch wondering why, why, WHY  she had to have diabetes too.  I had no answers, only open arms.

One Thanksgiving, Adam gagged over every bite right in front of a buffet of family and friends because–back then and now just once upon a time–he was so orally sensitive he could only eat just a few things.  On another, Zoe and I exchanged glance after shattering glance across the feast table as Riley struggled through an anxiety attack that made it hard for her take a breath.  During the holidays, we’ve rescued Riley from trembling, eye-locking seizures at the top of the stairs; we’ve festively cleaned soiled beds, swabbed ruined floors, monitored blood sugars, written schedules, and fought, fought, fought for the kind of family connections we all dream to have with our children. But then…what?

But then, God.

At the end of every “then what,” He waits, offering hope that can never perish, spoil, or fade.  And over the years, I’ve discovered that this hope–the profound fact that God stops at nothing to redeem–this unconquerable hope is the real magic of the season.

I’m not telling you that now everything is exactly how I dreamed it would be, nor do I mean to suggest that our hope makes it easy to live with the reality of disabilities and chronic illness.  Riley and Adam still require a schedule to feel comfortable, even on Christmas Day.  They still live to do and say the same things in exactly the same way as many repetitive, you-think-you’re-gonna-lose-your-mind times as possible every single day, holiday or not.  Riley still eats Thanksgiving lunch in bites hardly big enough to see because she’s afraid of feeling afraid again.  We still have to monitor blood sugars and eat at specific times.  And we buy really odd gifts, especially for our son, who would rather have a new calculator and a dozen music CDs than any of the high-tech, high-imagination, high-energy things coveted by neurotypical boys of the same age.

But these days, Riley addresses and stuffs and collates our Christmas mailings by herself because she’s so much better at that sort of thing than I am.  She selects and wraps her own family gifts, and of all of us, my once terrified-to-rip-the-paper girl is perhaps the most excited about presents.  Adam starts talking about Christmas before Thanksgiving, and tries, even in the short phrases he prefers, to convince my parents to spend the entire month of December at our house.  It’s not that he doesn’t know how to speak in sentences, just that he finds all the extra words cumbersome and unnecessary.  The way he sits with us through meals and sugar cookie decorating and games and celebrations, you’d never guess he once despised our entreaties to linger over gifts.  And baking and shopping and gifting—-the powerful fun of GIVING–have become mine and Zoe’s mutual joy.  We have Christmas meetings to strategize over generosity.  She has made peace with diabetes.

God has done this.

But more significant and precious than the evidence of our functional growth as a family are the changes God has made in our hearts over these years.  While gripping the frustration of trying to take pictures of children who don’t know what the words look at the camera, please even mean, Kevin became a photographer with great sensitivity for capturing the true beauty wrapped up in human flesh as it is–scarred, tender, journey-weathered.  While we have grappled with challenges, God has remade our eyes, teaching us to see that beneath the surface, every single person possesses vibrant abilities.  These days, we can give thanks for the hard things while we sigh over them.  Autism has challenged our children, but it has also given them their own tremendous gifts.  They bless the world uniquely.  We still cry sometimes over every single loss we feel, the bits of life that fall like dead leaves, the things–the ones–we sadly wave away.  But through the blur of tears, God has taught us that the ripping of the life we imagine only serves to reveal the persistant truths that can never be stolen from us.

For years, I wondered what I could possibly write about our knotted-up, half-torn lives, and then God showed me that every life is torn, somehow, and then He filled the emptiest parts of me with His own words. And the three-in-one refrain of our story remains:  God is, God loves, God stops at nothing to redeem everything.