Broken to Beautiful
Crash! A frantic lurch to save my dinner from Jonathan’s clutches with a feint around the corner of the refrigerator to lay down the ceramic top to my tea container. Doomed. I feel a momentary pang...Life with Jonathan. The broken pieces are a picture of the sometimes chaotic reality of caregiving for our son. Food grabbed and distributed on the floor, coughed up on the couch, smeared in hair, on clothing, furniture. Freedoms restricted. Energy sapped. The tea container, a gift from a dear friend Barbara Kavanaugh, harkens back to an earlier era of rearing our first five sons, a raucously joyous time full of celebration and wonder as we watched our children grow and develop. Our former next door neighbor, Barbara was Daniel and MIchael’s cello teacher. With the recent loss of her husband Patrick, founder and visionary of the Masterworks Festival, she has faced her own brokenness.
Like a fog burning off before a glorious morning sun, I’m surprised how quickly the sadness evaporates before a sweeter truth: the bond with Jonathan born of this Covid quarantine. I hold it close, like the priceless possession it is. We spend the majority of our waking hours together, filling them up with routine tasks. By God’s grace, after months of chafing at the bit, I am settling into the repetitive nature of daily life: Meal preparation. Watching as he laboriously moves the food around his mouth, to make sure he doesn’t over-stuff and choke. Singing or chanting “chew and swallow” as Jonathan points on his communication device. “Want eat chips.” Over and over. Mornings and evenings, multiple-step skin routine - acne scrub, acne treatment, antibiotic cream for the skin infections which occur more frequently in individuals with Down Syndrome. And finally, an antifungal cream for a fungus that came from who knows where. Bathing, toileting, “pants up, pants down, arms in, water on, soap on hands, dry hands, front and back, hang the towel.” Repeat 5-6 times a day. Sometimes Nick and I wrestle him down to clip his fingernails or clean his ears. Also on the autism spectrum, he fights us with amazing strength. Some long nights for reasons we don’t understand, Jonathan’s body won’t let him sleep. By evening, Nick often takes over, knowing I’m spent. And hangs out with Jonathan a lot on weekends. An amazing Dad!
One or two walks day are our main activity. Jonathan can walk up to 3 ½ miles now. I chatter to him about the flowers, trees, sky. “Will it rain on us? That’s OK, it’s an adventure, Jonathan! Mommy’s so proud of you. You’re such a good hiker.” A lot of the same phrases from hike to hike. It is a one way conversation. Jonathan is non verbal. But he likes our walks, and I think he hears me. Today we head out, finally, after many delays, when the rain takes a halt. Across the front deck to the van, he’s already brightening. He grabs my hand. Driving to a recently discovered spot, I glance in the rear view mirror. One side of Jonathan’s mouth turns up with that crooked, endearing smile. He’s even showing teeth. I keep chattering - “Mommy loves that smile, Jonathan. It makes me so happy.” He grins most of the 15 minutes to our hiking destination. It’s all I can do to keep my eyes on the road. His smile melts me. It’s the reward for all I do. We are together. Jonathan is happy. His eyes look right into mine.
Like that ceramic reminder of bygone days, our pre-Jonathan lifestyle is shattered. We will never have the freedom that many empty nesters our age have. Even with help, our daily routine will always be guided by Jonathan’s needs. I don’t say this lightly, or mean that I find it easy, but I’m beginning to surrender to the brokenness. Jonathan has made all of us in our family more tender, more compassionate. Less achievement driven. It is God’s providence that I’m compelled to overcome selfishness, daily. To cultivate God’s presence in the mundane. My grand achievement is caring as well as I can for Jonathan. I juggle my other responsibilities with varying success, and let a lot go. Though I wish I could duplicate what his teacher and 2 or 3 assistants and specialists do, I am one mother. And it’s enough that most nights, Jonathan hits the pillow, contented.
I’m going to glue that ceramic top together. Every morning I will see it when I make my tea or coffee. It will remind me to pray for Barbara. Its flaws will remind me that broken things, when God mends them, are more beautiful than before.
He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. Ecclesiastes 3:11 (NIV)