Awkward Grocery Moments (a day in the life #32)
What is it about kindness that can reduce us to honesty and vulnerability? There is still the occasional day my emotions feel so raw that I pray nobody will talk to me as I wander the aisles of the grocery store, getting a few extras for supper. Calvin can’t sit in a cart so I push him in his wheelchair which makes us objects of curiosity and sympathy. Not that I’m not grateful, it’s comforting that people care but it is hard to be reminded everywhere I go that something is causing people to stare at my son. Whenever I’m with him we can never float in oblivion, instead we are watched in every aisle.
I’d wandered all the aisles going about my business, trying not to be sensitive to other’s eyes and avoiding eyes so I didn’t have to make conversation. Normally I don’t mind but there’s times when the grasp on my emotions is too thin. We were waiting in the checkout line. Calvin had been fussing so I was holding him although with his lack of muscle tone he more or less just drapes over me. An older woman ahead of me looked compassionately at us and I smiled back as if everything in the world was just right.
“Honey, what’s wrong with him?” she asked curiously and with concern. Words always fail me. I feel like saying the unpolished truth, “He has massive brain damage,” and see if she has as much trouble as I digesting it. But labels make us feel safer, they draw the lines more clearly between ’us’ and ’them’. He has that and she has this, it seems how society packages our brokenness in neat little packages and tidy diagnoses. And so I caved and gave the safe and acceptable answer, “He has a neurological problem.”
“Can you do therapy to fix that? Will he be okay?” she asked. I stared incomprehensibly at her. It’s not her fault, we always want a happy ending don’t we? It’s hard to end a story without the silver lining. But some days I don’t want to think about the silver lining. Some days I want to just bury my head in his crazy hair and hold him tight and dream of him reaching for me.
“No, he’s not going to be okay,” was all I could say. By this time all attempts to wall in grief were crumbled and the woman and cashier stared dumbly at me a mess of tears and tissues. They said nothing and proceeded to finish their transaction.
There’s a time to let grief linger in our souls. A time to taste the bitterness of brokenness. A time to acknowledge our inability to beat the sorrow. A time for letting others see our grief instead of presenting it in a way that glosses the deep crevices in the heart. Grief makes Jesus and His salvation all the more healing and hopeful for our broken souls. Are you overwhelmed by grief this season? Don’t hide your grief, run to Jesus with it. Again and again.
Crazy-haired boy 
.
Morning Shimmers (a day in the life #31)
Why is it that nightime makes the glass half-empty loom large? How is it that the darkness illuminates pain? It seeps in every crevice and brings sorrow to the top, it’s what the night does to me.
And last night I cried silly over the glass half empty.
The little tyke next to me had a big day coming. He’d be strapped into a wheelchair and getting on a big yellow bus. Assisted by a nurse and oblivious to what was happening. I thought the glass would be more full if he could stay home, like other two year olds. It would be more full if he could get into his sister’s neatly arranged Little People and Polly Pockets. The glass would be fuller if he could run down the sidewalk after Noah, begging for a ride.
But these dreams are not to be, and the glass seemed to be draining even more. How much emptier could it get?
The man next to me rolled over trying to get sleep for the next busy day. Unsure of what to say. He bleeds too for his son.
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And why is it that when morning comes the glass looks full? How is it that the light dims the pain? The glass half-full sent shimmers of blessing everywhere through our home this morning.
Brothers and sisters loving each other, hugging little tyke as momma dressed him for his big day. The same little tyke that not many expected to make it past three was going to school! Healthy and strong. How could I miss these blessings? And every obstacle became a receipt of blessing. Everything I feared and NEVER wanted for my child: the wheelchair, feeding tube, nurse assistance, and special needs school turned back and reflected the Heavenly Father’s provision. His care. His keeping. Yes, He is walking with us and the evidences are shining all around.
We knelt down and prayed while we waited for the bus. We thanked God for these shimmers that fill up the cup. Little sister put her hand over his eyes, even though the eyes don’t see, to make sure he was doing the right thing {smile}. In no time he was hoisted on the lift, head drooped, unaware but listening to the sounds and feeling the movement. And then he was gone.
I turned to go inside and saw another piece of beauty. Little sister crying her eyes out about little tyke going. And my breath was taken away by this love and I saw the truth, the glass was running over.
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School Surprise (a day in the life #30)
It’s a place I never thought I’d set foot in (just one of the many in that category now). But really, how much of life does end up as we’d planned? The halls of the Conductive Education Center were lined with wheelchairs, standers and adaptive equipment. A peek in the classrooms opened my eyes to a world of kids working hard, teachers encouraging and motivating and progress happening.
Who knew this many kids were alive and thriving and working with every ounce of their being with bodies that contort, limp, and refuse to cooperate? Who knew this reality existed for so many? Who knew that school for so many includes therapy–therapy for learning how to move your tongue, how to swallow, how to get your arm to reach your mouth, and every other imaginable thing that comes so naturally to typical kids. It’s not the type of education you’d ever dream your child would need.
Many kids are getting their backpacks on this morning and heading off on big yellow bus for a new school year. But there’s a whole host of other kids getting strapped into wheelchairs, taking their breakfast by feeding tubes, and fitting their stiff feet into braces. Siblings are brushing their teeth and hair, parents are lifting them into the car and trying to gather everything essential for the day.
My feet were slow in arriving here the first day. I’ll just do this one last effort before I give up. I was tired of doing therapy and getting nothing back. Putting hours in just to get the head lifted a little higher. And then losing all of it after a week of sickness. I wanted the stamp of “THIS CHILD WILL NEVER DO ANYTHING” so that I could give up. Guilt-free.
Calvin was too impaired for the regular classes. Most of the kids have cerebal palsy but have more function than Calvin. Still the soft-spoken and confident therapist, Andrea, wanted to try. Even if just for a few months, perhaps she could find a way to maximize his potential. Her hands moved with his body knowingly. She understands the stiffening of the joints, the floppiness of his torso. She understands his desire to participate and frustration with a body that will do nearly nothing. And so she gives and keeps on giving cues to the brain and helps to the body.
Her Hungarian accent plays in my mind as I continue the therapy at home, “Roond and roond the garten like a leetle bar” (round and round the garden like a little bear…). After three months of working with Calvin she turned to me and said, “Dear Kara, I do not know how far he can go, but I know he can go more. His head is small but he wants it. He wants to move. He wants more.” I knew this meant I was not going to get the stamp, the get-out-of-therapy-free card. And we continue to work and train. It’s not for the Olympics–there’s no medal at the end of hard core work and training, just hope for one more piece of independence and ability.
The teenager’s classroom is right next to the room where Calvin works. After each session Andrea takes Calvin in and the room fills with “Hey there little buddy!” and “Way to go Calvin!” It’s said in slurred speech and with great effort. A teenager, John, laying on the floor pats Calvin’s head and smiles wide, “Way to go buddy, you keep on working hard.” The compassion takes my breath away.
These classrooms are rich. These are classrooms full of kids who know what hard work is. Who fight incredible odds and harrowing disability. Another girl is struggling to stand between bars. Her feet are turned inward and her head drops to one side. She’s beautiful with long chestnut hair. Her body shakes as she tries to stand to catch a better glimpse of Calvin. A smile fills her face while her head shakes with exertion.
Recently I found myself at a table with five of these teenagers. They talked and carried on much like every other table of teenagers I’ve ever sat at. They joked and talked all the while struggling to get food in their mouth or more pop in their cup. The scariness of the place has faded. It’s now a place of heroes to me. Of people I respect and admire. A place of kids with dreams like any other kid.
Calvin’s dream is to get the ball that is just one. inch. away. Maybe this year?
Read MoreJane Days (a day in the life #29)
It’s Thursday morning and the coffee is on. The clock reads ten to nine, time to kick it in to high gear. I whip in and out of the shower, give four medications thru the tube, start a new tube feeding, pour Cheerios (just one spoon of sugar, Noah!), comb the wet mop on top and clean the clutter in the living room. Just in time. Familiar knocking sounds at the door. It’s Jane and it’s exactly nine. Looking like she walked right out of the Talbot’s catalog she cheerily says hello to our gang while I grab a few gulps of coffee and try to look bright and fresh.
Jane walked into our home over a year ago as a home community educator with the Grand Rapids Public Schools. I wasn’t very excited to meet her. We’d just moved, the house was a mess and I was frustrated by the hours I’d poured into therapy with Calvin with almost no results. The first few weekly visits were hard. I was exhausted and wrung out, emotionally and physically. Calvin was unstable and I was more concerned about him surviving the next week than doing any sort of therapy to “move forward”. In my mind there was going to be no moving forward. After a year and a half of nothing I had come to grips that Calvin was never going to do anything. Anything. No rolling, no sitting, no head lifts, no hand movements, in summary no intentional movement. Looking for improvement was more agonizing than settling.
“Hello Calvin,” Jane leaned in close to Calvin. His head turned to her and his voice let out a long “aaaaaaaahhhh”. “You’re happy to see me, aren’t you?” she laughed and picked him up. “How are you today?” she’d say and then pause, always waiting for his response. “What do you say, how about we start with swinging?”
It always surprised me how purposeful and expectant she was towards Calvin. It was as if she completely ignored the ugly diagnosis on his progress sheet: Severely Multiply Impaired. To her it was just a boy, Calvin, with unknown abilities and desires. And she was determined to tap into those. I started to tune into the Thursday morning sessions a bit more seriously. The respect she gave Calvin demanded it.
Her entire demeanor was so different than anybody else that had interacted with Calvin. There was no pity but there was kindness. There was no settling but there was looking for more. There was no assumption that he couldn’t but an open air of expectancy that maybe, quite possibly, he could. She treated him with as much respect as you would treat a professional colleague. I gave Calvin love but I wasn’t sure even I gave him that level of respect, of dignity. It was beautiful and completely transformed the way we interacted with Calvin.
We began to implement the different ideas of exploration Jane opened for Calvin. We asked him questions and waited for responses. He answered. We began to see him as a child, locked in a body with no ability to express himself. We began to take his signals seriously, looking for patterns, tone changes, arm movements. We’d read books to Calvin and put his arm up to count the fish. Then ask, “Do you want to do that again?” His little wrist would rise up an inch off his lap and we’d finish the movement, assuming he was trying to communicate, “Okay, you told us, we’ll do it again!”
It is easy to become used to “what is” and never press for more. Never raise the bar of expectation. Jane shattered that idea in our house. One day she pulled out a cushion that vibrated attached to a switch. Every time you pushed the switch the cushion vibrated, Calvin loved it and would stare dreamily into space with his head tipped back as his feet were tickled by the cushion. There was no way he was going to push the button, I was sure. Over and over and over Jane would bring his arm and press the button. Calvin showed no response except for the smile on his face. We tried this for three weeks.
On the fourth week I was ready to pack the thing in and give it back. It was too hard, we were expecting too much. Fruitless work. Jane set him up again and repeated the same thing over. Bringing his hand, touching the switch, bringing the hand again. It was getting painful to watch, that lack of response, and I was thinking of suggesting some more profitable things to do. Then I saw it. Calvin’s eyes crossed in deep concentration, his brow furroughed, and lips pursed. With all the effort he could muster his arm rotated in a stiff circle and landed directly on the switch. I stared at Jane, she stared at me. “Let’s try it again,” she said. Calvin activated the switch again. He did it over and over again. I think we both wanted to cry.
These Thursdays or Jane-days, are coming to an end. Calvin will be starting school in September, boarding the bus in his wheelchair at the wee age of 2 (nearly 3). And that means no more Jane. I wish every child like Calvin had someone fighting for them, someone like Jane. Someone to take up the reigns when parents feel unable to do one more therapy session, try one new technique or carrying on with one. more. day. I wish every child had a therapist like Jane that gave them dignity and respect, an attitude so contagious it affects everyone’s actions around them. I wish every therapist would open doors of possibility no matter how many times the child hasn’t responded. It might just take one more time.
Programs do not change lives. It takes a person, a person with heart to make it real, to affect change. It takes a person who believes a child is worth everything and has intrinsic value, no matter how severe the disability. It takes a passionate and dedicated heart that uses knowledge to affect lives in real ways. These are the real helpers to families with disabled children. Thank you, Jane. Thank you for teaching us to get up and open the door one more time.
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SEE Him (a day in the life #28)
We worked as a team, Sophie and I. She brought the plates and scraped them clean and I stood at the sink with hot soapy water. These ordinary places and mundane tasks seem to be the very places where we flip ourselves inside-out to one another. She started the talking tonight. “Mom, how are you going to take care of Calvin when your old? Like, 92?” I laughed, “We will probably both be gone by then sweetie.” “Calvin won’t be, mom, he’s not going to be old then.” she challenged. “If you can’t take care of him I could,” she offered. “He would love that wouldn’t he?” I smiled. “He probably won’t be living to be very old you know. Maybe the Lord will take Him much earlier.”
The silence spaced out the clinking dishes in the sink both of us lost in our own thoughts. I was imagining Calvin with eyes that could see, a mouth that could speak, arms that could hug, and little feet that could run to me. She stood holding the next plate. “You know mom, I don’t want Calvin to have a problem with his brain, but I don’t want him to change. I want him to be just the way he is.” It seemed to surprise her, this realization and she let it out slowly. Noah chimed in, “Yeah, and I want him to make the same noises!” “Yeah!” shouted Evie, “and kiss us the same.” They batted a balloon back and forth in the diningroom hardly doing their dinner duties.
Really?!? It seemed like just last week a very indignant Evelyn pronounced, “I wish I had a little brother who didn’t slobber and could walk.” She, his chief adorer and president of his fan club. Maybe it was the fact she needed a “dad” to play house with and Calvin was the only option. I could see how that would be frustrating. But here, today, the tune was different. How are they catching the joy? How are they seeing the beauty?
It’s not because they don’t see the loss. Noah had just asked me about his little wonder-cousin Quinn (who is beginning the real adventure of walking!), “Did Quinny go to therapy mom?” No. ”Where did he get lessons to walk?” He just learned by himself, his brain told him it was time. Noah was amazed at this revelation.
Maybe they are catching the beauty because they are seeing him. The essence of the little boy who is growing like a weed (and oh how are we going to carry him?!) and making new squeals of delight as the days go by. The days go by and he still can’t walk and play Hotwheels and pretend to be “daddy” for Evie’s games. BUT these inconveniences are shoved under the rug when it comes to him. His person, his essence, his love, their relationship with one another. They love him as he is. They find him endearing as he is. They want him to always be as he is.
I’m not always there, I don’t always get that. I hand him over to Darryl, frustrated with his consuming care, wanting more of a life and feel a complaint deep inside because of the way he is. I get tired of his needs, of holding his pacifier in his mouth for hours so he can go to sleep while the laundry piles and the garbage can overflows and children beg for a story.
Slow down. See him as he is. See him. See him as the kids do.
Have I forgotten this in all my wishing in all my longing for something more? Have I passed over the beauty and forgotten the joy?
Open the eyes of my heart, Lord!
Feeding Tube 101 (a day in the life #27)
Jane called me in the morning to make sure I was coming to MOVE group with Calvin. “Do you want me to bring the feeding tube stuff again?” I asked. For several weeks I had come prepared to give another mom an idea of how the feeding tube worked. Her little boy, Jemma, was finding it hard to stay fed and hydrated because of his condition. Every week I came ready and each week she didn’t show. Not that I blame her. It’s hard to get out of the house with a child who needs you for every movement and support. Not to mention the medical equipment that has to come along. And of course, there’s always the lining up of the taxi and calling the school. Not having a car makes getting out that much more work.
“The doctor’s office checked to make sure that she comes today. It’s becoming more urgent,” Jane explained. Jane is our home-community physical therapist, a blessing dressed in Talbot’s clothes and a kind motherly figure. “I’ll be sure to be there,” I promised. Calvin was in a sea of blankets and hunkered down in his bomber hat knit by grandma. His wide eyes looked out the window as we passed through the gray dreary streets.
Was it really just a year ago? Yes, it had been a year ago that I was in the same place as this momma I was to teach today. A feeding tube had sounded downright awful and made me weak in the knees. A hole in the stomach? A tube to feed him? You may as well hang a sign on him: Something is very wrong here. I’m not a normal kid. I hated to think of one more thing that divided him from the good life I had envisioned. After the surgery I couldn’t bring myself to peel the blankets back and look. His stomach had been so perfect, so smooth, unmarred. I’d had enough ugly realities and didn’t want one more. “Do you want to try a feed?” a nurse asked. “No, no, I need more time,” I quickly answered and left the room while she gave Calvin a feeding.
I hoped I could help the momma prepare and take away some of her fear. We settled onto a mat in the classroom next to Jemma and his momma. She was wrapped in her traditional Somalian clothing and looked like it was just one more day in this hard existence. I wanted to reach over and hug her, to tell her I understood something of her pain. We chatted in broken English about her children while I slowly pulled out the feeding tube paraphernalia. Her eyes carefully studied the pump and cords.
Carefully I demonstrated how the pump worked. Her eyes kept falling to Calvin’s stomach covered by a shirt. She was curious and fearful. “Would you like to see his button?” I lifted the shirt slowly as if that would soften the harsh reality. It was quiet in the room and she asked, “Pain? He have pain?” “No, no pain now,” and I twisted his button around making her shrink back a bit.
I went on to explain the benefits of the feeding tube. Complete nutrition, good growth, able to give extra fluids in illness, easy way to give meds, etc. “Are you scared of it?” I asked. She simply said yes. “I’ve been there. I know it’s scary. You will get used to it and it will be good for your son,” I added. There are roads you cannot walk for another but you can shout up encouragement along the way.
We sat together quietly during therapy. Gemma was having difficulty controlling the spasms his body was forcing him into. Calvin sat unresponsive to the songs and play they tried to include him in. After the session we packed up our boys. She strapped Gemma in his infant car seat and slung him with the monitors on both arms. She was wordless as she made her way down to the taxi waiting.
I cried on the way home. Cried for another momma’s heart that seemed to be resigned to heartbreak. I cried for our boys who sometimes are so out of our reach despite everybody’s best efforts. Can you redeem this brokenness, Lord? Show Your glory! Show Your power! We wait for Him.
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