a day in the life (18)

POST EDIT: I think it is an amazing consolation how the Lord comforts us in surprising ways when we are most undeserving and even in times of self-pity. The same day this happened we also met our new therapist who is the head of the department of pediatric therapy at GVSU. She also "happens" to be a Christian and took special time to encourage Calvin and I though knowing nothing of the dark cloud hovering above me these days.  It humbles me to be put in my place again, God is here, He is not remote, and He even sends little breadcrumbs to reassure me. -Kara

We were arriving late. No matter how we try to make it to church on time it seems like something always interferes; the feeding pump, Calvin's startling, or kids searching for Sunday shoes.

"Why don't you stay home?" Darryl suggested as I struggled to put on something half-way put together. "No," I insisted, "we'll make it, just give me two minutes. Can you grab diaper, wipes, and feeding tube?" We left it at that and scurried around tripping over kids that were trying to fill their pockets with church candy, searching for their Bible and donning their hats. 

We piled into the van with no time to lose. No sooner than pulling out of the driveway Calvin began to stiffen and spasm. The brakes slammed, I whipped open the side door, put him on my lap, and we rode to church. 

Hearty singing greeted us as we reached the church and slipped into the last row. We had made it, though scarcely in fine form. My shirt had large spots of drooling nicely standing out on both shoulders and on my chest. Nice. I stifled my frustration with Calvin, even though I knew he had no control over it. 

His breathing was rattly and noisy and was amplified by my concern to keep him quiet. Evie wiggled constantly next to me and whined to be put on my lap. Everything happening in the present was a picture of my week. Chaos and upheaval frustrating me to no end. 

There's no place for us anymore, I thought to myself. There's no place for noisy drooling kids with beeping monitors. What am I going to do when he gets bigger? How will I be able to lift him and keep him comfortable at home? Will I ever have a life? Will we ever be able to sit through a church service? Once you start asking questions like this there is no end. 

I forced my mind to listen to the words floating through the church. It was a beautiful message on heaven. It should have softened my heart and made me submissive to this life I'm called to, right now. Instead the words were like feathers bouncing off metal walls. 

Bitterness came up in my heart. Today hurts. I know it's supposed to be small in comparison to the glory in heaven. But I can't get over this mountain now. I'm tired, I'm sore, and I've been broken up all week over Calvin. Couldn't some of that heaven start now?  If you want me to hear these words than please can you make Calvin be quiet so I can listen? 

But Calvin fussed on and I eventually left half-way through the service with a tear-stained face and drool-stained clothes and two kids in tow. Somehow it felt that this message for heaven wasn't for me.

Monday morning arrived with a treat, my dear friend Rebecca (who also happens to be one of the few people who can manage Calvin's care). Many days she is a breath of fresh air sent straight from heaven to our door. 

Her and I cut to the chaise quickly. She looked kindly at me, "Oh Kara, I don't know how you feel exactly, but I heard a story last week about heaven. A little boy was bullied terribly in the fourth grade. He begged his dad to be home-schooled. He never wanted to go back to school, it was too hurtful, too painful. The father looked tenderly at him and said in the most compassionate way, "Oh my son, I don't want you to hurt or cause you pain, but I must send you back to that school. If you never finish fourth grade you won't be ready for what is next, fifth grade."

"And so the Lord hurts when we are in pain. He doesn't delight in our feelings of being overwhelmed or in pain. But he is using this for what is to come in this life, for what's next, and for heaven."

And then she sent me out the door and stayed to watch the kids while Calvin and I headed to Mary Free Bed for therapy. I quietly gave thanks, Thank you for sending a friend to show Your care even thought I couldn't stay for the sermon. Thank you for caring for your weakest ones. 

a day in the life (17)

We were shopping the clearance sales at Macy's. Darryl searched the racks for pants while I adjusted and re-adjusted Calvin in his stroller. His startling is bothering him so much lately. Mom and Dad Dedert were visiting and taking care of the rest of the kids while we spun out on this little date.

Beep, beep. Beep, beep. His little feeding pump was set off by a bubble of air. The people around us searching the racks looked a little closer. His white tube was suspended between his Dr. Seuss bag and his tummy. His eyes searched out the bright department store lights. Darryl focused on checkered pants and pleats or no pleats. I was caught up in the feeding pump and holding his arms tightly to relax his body, all the while tossing out my opinions. "No, too old-manish. Yup, like that color."

"Would you like an easy chair?" The employee of the suit department ushered me into the men's waiting area. "What's the tube for?" his concerned look was kind and fatherly. "It's a feeding tube," then as if sensing his next question I explained, "he has a neurological disorder." "He doesn't eat anything by mouth?" he asked surprised. "What are his problems?" I never quite know how to proceed, how do you dump a burden of sorrow onto a stranger's lap? How are they supposed to respond? "He can't move, he is nearly blind, he can't eat, but he can hear, loves music, and is adored by our family." He didn't have anything to say (and who can blame him) and offered, "I have a nine-month old grand-daughter." I bet he'll hug her a little tighter the next time he sees her.

Darryl had his pants picked out and we were off to pay. The cashier, Cara, looked curiously and carefully at Calvin. "How old is he?" I replied but knew she wanted more and really, wouldn't you rather have people care than ignore? I do. "Will he ever get better?" she asked expecting me to affirm. Sometimes looking for better makes us miss the good that's already here. I'd never been asked that before. My mind knows he won't but I carry on from day to day living in the present reality.

Maybe it's from the summer we've had thus far, a great summer. Calvin has been doing so well that I almost have forgotten how bad it gets. The weekend was a reminder that the summer is a reprieve from normal, not the new normal. We've enjoyed going to bed after Calvin, staying up to watch Lark Rise, waking up to a boy giggling in bed instead of screaming. It's been a new window into him, a sight of a boy contented and feeling well.

I might have forgotten about the storms he faces. I might have forgotten that hospice wasn't here just to help our family cope, but to help Calvin as he dies. I might have forgotten but a little storm sent reminded me quite quickly. It was early Sunday morning that Calvin woke blue and gasping. Another trip to ER to open his airways. Another trip home to care for him. And it's been another two days of caring for him as he coughs and chokes on secretions and struggles to find air.

Now I remember. I remember that Calvin is not going to get better. I remember that the reason he was photographed this morning along the beautiful banks of the Thornapple River is so we will have a memory. I remember how hard it is to see him choking and I remember how we flip-flopped in our decisions about his care.

My mind was spinning with all these things as we sat on the bank of the river this morning. Calvin sat in his chair listening to his brother, Noah, tap out merry tunes on his harmonica. All the while the photographer clicked away. 

a day in the life (16)

Parents of special-needs kids have all sort of unique (and often seemingly bizarre) things that have to be accommodated for; sensitivity to hot, cold, loud noises, inappropriate behavior, etc. Here's a story about one of Calvin's (and thus ours) challenges. This is not a complaint, just a window for you to see into.


Grocery shopping.

It's what was on my to-do list after supper. Darryl headed out the door with free tickets to a Whitecaps game (thanks, Dad!) and Sophie and cousin Elijah in tow.

Feet pounded out the door, car doors slammed and we were left in the quiet house. Noah, Evie, Calvin, me. Oh yeah, there were messy counters and a long grocery list full of items needed before dinner. Now it was after dinner. Overdue.

I weighed my options. It's not that taking kids to the grocery store is bad, nope, I like that part. It's the car ride that I dreaded.  All week Calvin had been having a hard time controlling his startle reflex, making it hard to go anywhere in the car.

We piled in. Surely he would be fine, Meijers was only two miles away anyhow. Evie piled in back to her seat and I appointed Noah to be "the guard" on the ride over. The guard's responsibilities are this: sit in the seat opposite of Calvin and watch for his hands to fly out. If they fly out quickly grab his arms and bring them into the center. Talk to him and try to get him out of the startle position. Easy, right?

We were nearly at the main intersection and it started. Piercing shrieks that made my stomach lurch. Stronger than usual and out of control.

We were used to this routine. "Noah, grab his hands!" It was no use. His responses had been getting continually worse throughout the week. Today they were at his worst. I frantically looked for a place to pull over. There was no place. I turned to see Calvin turning blue (crying hard makes his airway collapse) with his legs and arms up in the startle position, stiff as iron. Noah stood in front of him desperately trying to stop it but our usual solution wasn't working this time.

The distressing shrieks continued to fill the van. It was frightening. It was no wonder that I saw little Noah's eyes begin to flood and then his body begin to shake. Soon his wails were matching Calvin's. Fear does that to you when you're scared for your little brother.

I stopped right there. Hazards on. In no time I whipped Calvin out the door and into my arms. Slowly he came around and his body relaxed slightly. There we sat in the middle of moving traffic, boy on my lap, and me not sure what to do.

So I did what I'd do in Cambodia. I put the tyke on my lap and we drove the rest of the way together, up there in the driver's seat. No doubt the people that pulled up next to me thought I was some sort of irresponsible mother. But little did they know (and little do we know about the people we quickly pass judgments on).

We made it safely and I added do not take Calvin to grocery store again by myself to my mental checklist.


I could see Noah wiping away tears in his seat. "It's not your fault, Noah. You did a very good job." His perplexed face met mine, "Whose fault is it? Why does he scream like that?" I sighed, "It's nobody's fault honey. It's his brain sending all the wrong messages to his body. You're a good brother to him."

We got out to conquer the next hurdles, namely, shopping without choking, vomiting, or startling, shopping with baby in my arms and two kids in tow, and actually getting all the items I needed.

Success.

And then we had to survive the ride home again. It's just another day in the life.

a day in the life (15)

These summer months are busy and my posts have been fewer. I think I break every rule a "good blogger" abides by. I hope you are enjoying these summer days as much as we are. ~Kara

Calvin's "good stretch" left Darryl and I feeling nearly euphoric. The past week was littered with wonderfulness: toes squirming in the warm Lake Michigan sand, early morning squeals and smiles, giggles in the hammock swing, and joy waiting for us everywhere.

The euphoria followed us the surgeon's office. Dr. Roberston. We sat in the waiting room adoring our young man's smiles and shared a knowing look. We'd waited so long to see our boy like this. Darryl picked up a magazine and flipped through. My chin rested on his shoulder, my arm in his, and stared at the pages (not really seeing anything but happiness). 

We were burning with hope. With contentment. Our son was happy. Not in pain. Unable to move but full of life and full of delight. Oh little boy, you've stolen our hearts so. For once we felt we could REJOICE in his life. 

Dr. Robertson ushered us into his office. We were ready to schedule a surgery for Calvin. One that we hoped would rid him from choking and filling up his lungs. Dreams were filling our minds. Dreams of life with Calvin. Three weeks of him feeling good gave us a glimpse of just how joyful life is with him. We were dreaming of Darryl carrying him around piggy-back on the beach. Letting him splash in the waves. Dreaming of him rolling over and us screaming with excitement. 

How could he deflate those dreams? It wasn't his fault but I wanted it to be. I wanted surgery to be the solution for Calvin living with a good quality of life. "I'm voting no for the surgery. The risks are many and the benefits are not sure. It might complicate his case more and make him even more uncomfortable," the surgeon said. 

That left us with plan B, stand-by Calvin and assist and love him as much as we can while his lungs struggle with constant aspirations. "Can't you give us another answer?" I asked, knowing I was asking the impossible. "I wish there was something I could do," he said. 

We left the office. We left the euphoria there too. I looked down at Calvin's grin and wide eyes and found that joy had remained. All is not lost. No, all is not lost. 

There is no way to quantify or qualify the benefits and sorrows of life. But this I know, we have gained even in the face of loss. 

Christ has become our surety.

Life has become sweeter.

Heaven has become our longing.

Death has been trumped by eternal hope.

Love has been felt deeper and stronger.

We are full of hope. Hope in Christ and his comfort, his plan, his ability to take things that break our heart and turn them into wells which he pours his redeeming work into. 

Clinging to Christ is not a last resort. It is the only way to start living.

For the preaching of the cross is to them that perish foolishness, but unto us which are saved it is the power of God. 1 Corinthians 1: 18

a day in the life (14)

I've been chewing clove potpourri the whole day. Have you ever had dry sockets after your wisdom teeth were removed? The doc strung up this long piece of brown stuff soaked in some sort of concoction, wrapped it up and put it in the hole in my mouth. It's like having gum where the flavor never ends, clove gum.

Here I am babbling about things that don't really matter. I've been doing that lately. My mind and emotions check out and I find it hard to focus on anything in the here and now that's actually important.

The past few weeks my hands have been pried off my boy even more. And I don't know what to do with it. I find myself worrying about completely pointless things and glossing over huge things.

Take today for example. It was the day I'd been waiting for for several weeks. The day I got the results from the ENT from Calvin's airway study. The day we would hear how long Calvin has to live (according to medical estimation of course). Today came and I really could have cared less about going.

I sat quietly composed while the compassionate doctor looked carefully at me and said, "I'd estimate he has two, maybe three years to live." I asked the appropriate questions and held it all together. No tears came even though I knew they should be. We sat discussing the immediate threats to Calvin's life and the most likely way he would die and it felt like we were discussing another child, not mine. 

As we left the building all I could think about was grabbing a brochure from the front about the history of the building. (The docs office is in a historical home). Then I realized how horrible and callous it was that I cared about a building when I held fading life in my arms.

This grief thing, it comes in waves and leaves you numb, tired, empty. Sometimes it seems like there are no more tears to cry and nothing more to say.

Tomorrow Hospice is coming and all I can think of is taking my kids to the beach and feeling the wind on my face.

Hi baby, you love this weather, don't you?!

My nephew, Nick, on duty with his two cousins, Quinn and Calvin.

a day in the life (13)

It was 9 pm and time for me to work through my mental checklist for the night meds.


Medicine 1. Filled up in a syringe, 1.3 ml. Put into the J-tube. Helps gut motility.
Medicine 2. Pink smelly liquid, put into the J-tube, all 3 ml. Stops epileptic discharges. Reduces muscle stiffness. 
Medicine 3. Seizure meds. Crushed, mixed with water, put in J-tube. 
Medicine 4. Another crushed pill. Reduces acid. Flushed with 10 mls of water. Given through J-tube.
Medicine 5. Steroid through the nebulizer to open his airway.
Medicine 6. Another steroid through the nebulizer to help his lungs. 

Darryl and I worked as a team, dosing out meds and giving them to Calvin. We sat yawning on the couch together, all three of us. "I feel like I haven't seen you in days," I confided, "let's just sit here and talk." Darryl looked at me blankly as if to say what more is there to say? Maybe I was just trying to say, I miss you. I miss it being just me and you. No offense intended to the little one on my lap.

The day had started at 4 am with a loud shrieking sound from Calvin's apnea monitor. Talk about waking with a start. Good grief! By the time I made it to the alarm Darryl was thoroughly disoriented and wondering if we were in the middle of a tornado or fire. Good morning, honey was what I thought, but I think what came out was "Hit the button, hit the button!"

The rude awakening made me think twice before suiting Calvin up for the machine again tonight. But the docs were waiting on reports from the monitor so, what do you do? Hook him up. I carefully wrapped him up and placed the nodes just right on his chest. Hans from Airway had demonstrated how to run the machine, "It'll let you know if his heart rate goes over 220 bpm, under 60 bpm, or if he holds his breath for more than 20 seconds." He wasn't kidding, it let us know.

It was nearly midnight before Calvin could finally drift off to sleep. With our eyes fighting our own sleepiness we rigged up his machine to the nodes on his chest anxious to climb into bed and be done with another day. I reached over to press on and, "EEEEEEEEEEEEEEEEEEEEEEEEEEEE".

The alarm was stuck. At smoke detector noise levels. Nails on chalkboard levels. Nothing like a soothing lullaby before bed. Isn't funny how noise can put you over the edge?

Darryl shouted, "Unplug it, take it out, cover up the speaker, press the button," and any other instruction he could think of. "Nothing works, it's busted, what a piece of junk," I ranted while swatting furiously at the buttons, plugging and replugging, "bring it downstairs and get the manual."

"Forget the manual, I'm taking this thing apart," Darryl frantically searched for his screwdriver just to turn it over and find it was safeguarded for that very purpose. "I'm putting it in the garage," he insisted. "No, that's ridiculous, I'm sure there's some 24 hour number to call," I countered as I flipped crazily through the manual.
But no number could be found. And the alarm went on and on and on.

"Don't you feel like the weirdest things happen to us?" I shouted over the noise. "Who gets a busted sleep apnea machine that goes nutsos at midnight?"

"Don't worry, I know what to do, " Darryl (the rescuer) reassured me. He took that machine and stuffed it under the couch cushion and whacked pillow after pillow on top. It didn't help. The alarm was still filling the house. Did they make it to alert the nearest hospital or what? "I forfeit the fight with this crazy thing," I muttered as I made my escape.

Five minutes later Darryl crawled in bed with satisfaction written all over his face. "Ha, you won't hear it now. I put it in my backpack, rolled it up in a sleeping bag, put it in a bin, covered it all up and stuck it downstairs."

It was as if he'd saved the world. 

a day in the life (12)

His haircut made him look like such a big boy. Calvin sat on my lap, still in his jammies and turned his head towards the daylight streaming through the windows. His neck rested in my palm and his arms hung loosely. It was just me and him again, and all the good folks on the tenth floor of Helen DV Children's Hospital. We were there for another 24 hour EEG to evaluate his seizure activity.


The hours passed. Comfortable silence. Contentment with one another. His eyes couldn't find me but he could feel me there. Today was an opportunity to come away for a little while, just what I'd been hoping for. When the noise fades from the people on the streets, and the shoes scuffing in the halls, and the children clamoring in the kitchen, there's room for the quiet parts of the heart to find their way out.


Last night I'd dreamed again about the day the doctor found something wrong with Calvin's head size. The day I knew our lives would never be the same. Noah and I had gone to Bangkok together, the rest of the family was to follow in a week. "Mommy, can the doctor fix our baby?" Noah had asked in a perplexed way as I tried to keep breathing and stuffing the tears. "Why are you crying? Are we going to the doctor again because our baby is sick?" These things were too heavy for a three year old. They were too heavy for me. And all I could do in the taxi was cry silently, Lord Jesus. Help, Lord Jesus while Noah munched his chicken nuggets and counted pink taxis. 


It was the beginning of a road of pain that plunged depths I'd never imagined. It shakes me still many days. When I see a boy in a Kohl's ad that looks Calvin's age or when I want him to reach out and put his arms around me. 


When we started down this road I didn't want to hear about all the wonderful things that God could use this for. Nothing could have merited what was sacrificed. I didn't want to hear about other people triumphantly rising above incredible odds. They didn't understand the depths of this pain, this loss. And I didn't want to hear of healing. These wounds were so deep and the chasms kept going further down and down and down. There was no way back up.


God surprises. God is gracious. He doesn't fill those chasms but He goes down into them with us. Really, He does. At times things were so difficult that we could relate to Paul who "despaired of life itself". I did not turn with admirable faith to God. Instead I screamed at my husband, "If this is what God does to people that follow Him then I don't want this. What good is God? He took my son." I tried to make Darryl answer to me for God. He couldn't of course. We wept together. 


There was nothing to do but go back to our silent Father. And go back again. And again. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.  -Psalms 27:14


His Word was our mainstay when the hand of providence seemed against us. Walk by faith, not by sight. His promises of consolation were our very breath. Slowly He worked healing where we never thought healing to be possible. His tremendous grace sought after us even when we turned to run away. 


We still struggle with overwhelming grief. We get frustrated with lack of progress, suffering, and the lack of ability to do so many things we want to do. And mostly we still grieve Calvin's loss. His loss and suffering is so hard for us to understand. 


But there's something new. It's that peace I didn't want to hear about. It's that comfort I didn't think possible. It's that trust I didn't feel safe with giving again. He has graciously filled our hearts with hope. Hope in Jesus. Trust in Him and His plan to take the most difficult things and flip them upside down for good. He's given us a glance to see how minuscule our faith is and how patient and gracious He is. Desire to praise God. Delight in the way Calvin is and who he is. The loving kindness of the Lord pursues us.


The road is hard but the flowers of His healing are springing up.

a day in the life (11)

Every day is a unique experience with a special-needs child. Sometimes so exhausting that it's too tiring to relive it again in writing. I am trying to make the effort again to share this world with you. ~Kara


Luke's big blue eyes stared up at her and a sideways grin lit up his face revealing his perfectly formed baby teeth. When her wrinkle-framed eyes met his the result was electrifying joy. Not a sentimental feeling that comes and goes, but joy so concrete you want to reach out and touch it. 


Calvin and I sat next to them in MOVE group (Movement Opportunities Via Education) at a special education school. We'd gotten to know Luke and Sandy through the months as we worked on creating any sort of progress with our little ones.

I remembered when I first met Luke. He was so compellingly beautiful and simultaneously difficult to look upon.  It wasn't just because of the hole in his throat providing a way for a trach tube. It wasn't just because his head was small like Calvin's. It wasn't even because he had to be suctioned every few minutes to keep from choking. It was the invisible sign I saw every time I looked at him. It read, SOMEONE DID THIS TO ME.


Luke had been abused. Shaken by his father over fifty times over a few weeks. The last time he was shaken until he went limp. His father's frustration and rage needed an outlet often, and Luke was there. By the time the ambulance arrived at the hospital he was flat-lined. He had been shaken so badly that the back part of his brain died. How do you tell a child you're sorry? How do you grapple with his loss? And what good does it even do for him? 


And that's why I couldn't look at him. Instead I wrestled with God, why didn't You protect him? Couldn't you have stopped it? I fought my own demons too remembering times when my frustration flooded my own words and actions. The same root was in me, it just hadn't grown so large. We are a sorry lot, this broken humanity, full of our own sinful stench and blaming God for it.


Over the weeks my eyes turned back to the pair often. Not in horror. But in growing wonder at the living picture of God's grace right next to me. The picture of someone taking someone so broken, so violated, so needy and giving him dignity, love, pieces of herself. It seemed impossible to see such beauty growing and overflowing in such dismal circumstances.

"God has a plan for this boy," she said emphatically, "there's a reason he survived. When I saw his story in the paper I said, Lord, somebody needs to love that child. Two weeks later I got a call asking if we would take Luke. It was like God saying to me, yes, someone needs to love this child, how about you? When we went up to the hospital we weren't expecting to see such a beautiful boy. He was just breathtaking." Sandy and her husband weren't new to this, they've been a safe haven for over 60 kids.

Sandy and I simulated "playing ball" between Luke and Calvin. "How do you do his trach tube? Do you have nursing care?" I asked. "No, we'd rather take care of him ourself. We've learned how to care for his tracheotomy, we change it once a week. We lay him back on the counter and let his head lower and we put the new tube in," she stated matter-of-fact. It made my stomach hurt. "We want to give him the best love and care we possibly can. We're too old to adopt him so we need to do what we can, while we can," Sandy said.


She paused to look down at Luke and catch his eyes. Joy again. This time I was humbled. Humbled to see God's restoring hand in real life, in real people. Isn't this what He does with sinners? He gives them love  and life; He gives salvation in Jesus to desperately needy and helpless people who can do nothing but receive it.


It was time to leave therapy, we packed up our boys together and headed out into the cold sunshine-filled day. "I admire you," I said as we neared the parking lot. Sandy responded, "God has a purpose for this, just like he does for Calvin. Who knows what God is preparing you for, maybe someday you'll be a foster mom too."

Luke and Sandy loaded up in their mini-van and were soon gone. But the picture they created of restoration and grace will never leave.

a day in the life (10)

Calvin laughed as Evie played patty-cake with his little hands and stiff arms. She leaned her little pint-sized face into his, "Mmm, Calvi we wuv you, Calvi we wuv you." His grin stretched even wider as her wayward hair tickled his nose. Her smile matched his. Joy. Delight. Love.

No personal space involved here.

Batman (a.k.a Noah) swooped down from the steps and leapt onto the couch. "I will save you," he pronounced to the hostage, a little fella by the name of Calvin. He bounced hard on the couch cushion making his hostage giggle from the bounces. Batman wielded his almighty powerful stick (leftover firewood from last night) and protected the 14-month-old hostage from all the invisible "bad guys" surrounding the couch. That's right, you protect him, my boy. Take him on your adventures. Let him see life through your eyes, your laughter. 

Even Batman needs to get dressed.

The Jesus Storybook Bible was open on her lap. "Thud, thud, thud," Sophie was emphatically recounting the story of David and Goliath to the little lamb snuggled up in her side. "I will fight you in the strength of the Lord," she read on as Calvin sat still, eyes open and still, soaking up all the sounds from his sister's story. She paused to straighten him up before he nose-dived into the couch. Tell him your stories, Sophie. Tell him the story of Jesus. Take him under your arm, tell him about your love, tell him about Jesus' love. He'll listen. Tell it to him again. 

Another one of the many times she's caught reading to him ;).

The fire crackled and hissed as Darryl put on a fresh log. Calvin lay on the floor by us, silent, mesmerized by the firelight. He was calm for once, seeming to be out of pain. Darryl brushed threw his hair (the hair that desperately needed to be cut but his mom just couldn't quite do it). "How can something so broken be so beautiful?" Darryl wondered as his little boy swung his arm up to hit his daddy's face. Is it the image of God shining through more brightly in children like these? Innocence? What is it? 


These moments are slices of heaven on earth.

a day in the life (9)

"You should join a support group," a friend suggested, "it would help to be around moms who face the same challenges."

"Mmm...." I pretended to consider it but inside I was saying, support group? No thank you, not for me. All I could imagine was "Hi, my name is Kara, and this is my sob story." No, I most definitely wasn't going to be in a support group.

Yet, here I was. At an over-sized oval conference table with several moms and a child psychologist--a support group. I wasn't there intentionally, I had just fallen into it.

Shannon, the Kent County vision therapist, had invited Calvin and I to a session with the Active Learning Group--a group where kids engage in their environment with self-initiation and motivation. That's just a fancy way of saying you are a bystander to your child's play.  There's no loud talking, dangling of toys in faces, or moving their body in the way you want them to play. You let them lie on their back and find the toys as they swing their arms. Light boxes with different patterns lay waiting to be discoverd. It's all really neat actually.

Anyway, I stated something to the effect that I really didn't want to go. I don't like being in groups with other kids, it makes me focus on all the things Calvin isn't and yadeeyadaya. "No, no," Shannon insisted, "you need to come. There's other families like yours." Really? So I went that Thursday morning.

Calvin and I were having a good time in the room. He was sitting on the big ball enjoying the whoosh, whoosh, as he bobbed up and down with a delighted little grin on his face. I was just beginning to move him to the platform swing when I heard the door open and another family enter. The room was filled with a peaceful whirring sound; I cautiously (and as unobtrusively as possible) looked over.

A sweet little boy, maybe about the age of three, was in the chair. He had white tubes in various places, he was hooked up to a trach tube and ventilator. His mom, who looked about my age, calmly went about laying him on the floor and then suctioning him as if it were the most common thing in the world. And I guess it was, for her. 


I saw another beautiful toddler girl arrive. Her chair was the same one that Calvin should be getting in a month or two. The same chair that caused the words, "That is scary looking," to spill out of my mouth when the medical supplier arrived with the demo at my house. And maybe it isn't so scary looking. What's scary is that my boy needs that chair. The girl's mom and nurse carefully lifted her out of her chair and laid her carefully in front of the light-box.

Another toddler girl played in the corner. Her body was small, maybe the size of a two-year old, but she had hydrocephalus (large head). Her features on her face were disfigured with blond hair laying tousled on top. I sat there with my little guy and his little head (microcephaly) and was taken aback by the quiet peaceful demeanors of all the moms in the face of such loss and pain.

That's when the child psychologist came in and invited all of the mom's into the conference room (see above). I really had no polite way to refuse. What took place in the next hour opened my eyes to these everyday heroes. These women weren't here to exchange sob-stories even though their stories had more scars and pain than most people ever face. In fact, these may have been the bravest women I have ever met.

Calvin's homemade "Active Learning" center in the kitchen.

He found it!

a day in the life (8)

I've been too outta steam to post. So if anyone out there hasn't given up on me and is still reading, thanks for sticking around. I'm back, and so is the next episode of a day in the life series. All my wishes and love to you for this year of 2011, may it be blessed. ~Kara

Why is it always so hard to make it anywhere on time? This is what I was wondering as I curled Sophie's hair. It was the night of the Christmas program; Sophie was nervous and excited while I was frantic and exasperated. No matter how much I planned ahead, dirty diapers, knots in hair, missing tights, and feeding tubes beat me at the game of time.

Evie came running into the bathroom twirling in her purple "princess" dress, happy to be going out even though she had no idea where. Noah was absentmindedly singing about the "Eensy weensy spider" who "went up to outer space". At the top of his lungs. To the shower curtain. (Water spout, outer space...close, right?) Darryl stood at the bathroom door with Calvin in his hands asking me which tie looked better and I pretended to have an opinion. Mayhem can be cheery, and this was that sort.

Sophie looked beautiful in a simple red slip dress with silver sparkles. I curled her hair slowly enjoying her company and chatter. I was thankful to have this Christmas together. It had just been four weeks before that Calvin was quickly declining and left us wondering how much time we had left with him. She had snuggled up close to his still pale little body and buried her face in his hair. "I just want him here for Christmas, mom," she said to me with teary eyes and hugged him into her side. And she had been given her wish.

Since surgery Calvin hadn't been having trembling episodes and was doing well.  Well enough to all venture out into the snowy night. Glorious! After a few minutes of pushing everyone out the door, up into the van, into their seats and with a click snapping them in...we were off.  Whew! I was ready for a latte, a good book and a foot massage.

The Christmas program was beautiful and amazingly Calvin sat through most of the concert. Evie did too (with the help of some fruit snacks from a friend). The dimmed lights and lack of bustling made me feel relaxed. Calvin lay in my arms his eyes searching out the lights he could dimly see and his ears perking to the sounds around him. Doug poked his arm into me halfway through the program and gestured to me that he wanted to hold Calvin. Doug is a young man with a chromosome disorder. And he loves kids. He will frequently catch me in the church parking lot and ask me "How Calvin?" with great sincerity and earnestness.

He tenderly took Calvin in his arms and gave a delighted expression at Calvin's little noises. Doug had an unmatched enthusiasm for each new class that would come out. When the little kids came out playing violins he was just overcome with delight and I was overcome with delight watching him! At the end all the elementary kids came together on the stage which made him completely ecstatic at the sight of so many little kids up there. He pointed in disbelief and amazement as more and more kids poured onto the stage.

I watched all this while he was holding Calvin. And I saw the gift of delight . Delight in the good blessings God has given us. There was something very special about the two sitting next to me. And I don't mean that in a mystical romantic sort of way. I don't ever want to romanticize special needs because it is not (and may I repeat) NOT romantic in the least. It is hard. It is frustrating. It is a sorrow.

Yet I was taken aback by the beauty that radiated from those beside me. Although affected deeply by the fallenness of this world in a physical and mental capacity they seemed to find unadulterated joy in the precious and simple things of life. Things I often overlook or sully with boredom and busyness.

Somehow these dear ones have a way of touching people in new ways. Making people see new things. Or to see old things differently. And for a time I felt not a drop of sorrow as I sat there that night. I felt blessed. Blessed to be touched by this this young man and my son. Honored to be part of their lives.