Heart Surgery

Today Noah underwent open heart surgery at the Mott's Children Hospital at U of M. His surgery lasted about four hours and as far as we can tell everything went well. The surgeon, Dr. Hirsch, said his aorta was narrowed down to the size of a pinhole. This explains why Noah could scarcely walk anywhere without complaining of leg pain (and we thought he was just wimpy!!!).

We are thankful this was addressed quickly (he was diagnosed in August) especially after finding how narrowed it was. We were also told to prepare for the possibility of him being opened from the front and put on a heart and lung machine due to an unnatural narrowing he also has on the arch of the aorta. We are SO glad that the surgeon was able to go in from the side between his ribs and get to the heart that way. The surgeon also prepared us for the possibility that he may have to have open heart again some point in his life (and opened from the front) to deal with the narrow arch. After surgery she said there's a good chance we won't need to.

Tonight we were allowed to see him for a few minutes in the PICU. It's scary to see your child completely incapacitated and looking so fragile. He's not breathing on his own yet, hopefully in the next day or so he can be weaned from the vent. The nurse said this surgery is more painful than cracking the ribs, he's on morphine for the pain. What a blessing anesthesia and pain meds are! One of the hardest thoughts for me is his complete bewilderment and confusion at his pain and new surroundings. How terrifying for a little boy, I'm glad he knows nothing of it right now.

My wonderful mom and dad are with us and I'm so glad. Such a comfort and help for us. Calvin is also with us, we didn't dare leave him since he's been so fragile lately. Everybody naturally thought Calvin was the one in for the heart surgery. We would say, "No, this is Noah," and point to the completely healthy looking child. They didn't know quite what to say :)

We are so grateful to the Lord for good news this far. We are encouraged and humbled by your prayers for Noah, thank you.

When Things Don't Get Better

“Have faith, things will work out. God always works things out.”

“Have patience, things will get better. Just trust God.”

These hasty dismissals from well-intended passerbys mock me. Taunt me.

Because things are not working out. At least not in the way I’d hoped.

This past week we spent countless hours rescuing our one-year-old son as his body turned blue. Over and over. Breathing into him, frantically calming him so his airway would not collapse. Suctioning him as he vomited repeatedly and choked as it went back down. Death wasn’t my main fear. It was the threat of further brain damage. Further debilitation to his already severely disabled body.

We’ve waited over a year a half for “things to get better”. My mother-in-law used to always try to rally our spirits with, “Keep your chin up, things will get better.” She doesn’t say that anymore. What if the pain and problems don’t go away or get better? What if they get worse? Where is God then? What if His providence fills you with foreboding instead of comfort?

Next week we will give our other son, four-year-old Noah, over to the surgeons. The surgeons who will open him and cut out a part of his heart. We will turn him over to machines that keep his lungs and heart alive.

Somewhere in the exhaustion of the night, the anguish of watching Calvin struggle, and trepidation of our Noah’s surgery, a hard word quietly escaped my mouth, “Curses.”

It seemed that God had turned on us. We had just prayed fervently to the Lord, giving Noah over to His hands. As we prayed and spent the days trusting the Lord with his future it felt like He stood in front of us and unflinchingly knocked us over to the ground while we were bowing before Him.

No longer did God seem our refuge and fortress. He began to be the enemy in my mind. Didn’t He know we had more than we could handle? Didn’t He know that we were barely keeping it together? Didn’t He care we were exhausted and already feeling broken? Didn’t He know we needed to be put together again? Instead it felt like we were being finished off, ground under His heel.

It’s terrifying to think of God Jehovah as an enemy. Who can stand before Him? We have no right for blessing. But we desperately want it, need it. And when it doesn’t happen we rage, “Whose side are you on anyway? It doesn’t seem like mine.” And then guilt clouds our soul because our own barrenness glares sharply back at us and we know we have no right for mercy.

We are left to whisper quietly, Search me O Lord.  Why is Your hand so heavy on us? Where is the glory in this?

Where is the glory in this? This probably would have been my thought too if I had stood at the cross of the one who died two thousand years ago, Jesus the Christ. Naked, defeated, shamed. How could there be glory in something so tragic? But there was. The very picture of defeat was God’s picture of triumph, redemption, possibility. Where there was brokenness there was a place for God to change the world of sinners.

And so I take my own picture of brokenness and pain. I lay it at the feet of the Lord and I plead, Have mercy. Don’t let defeat and sorrow be the final chapter.  Turn these sorrows into the greatest joys our lives. Turn these defeats into inlets for Your mighty work. Take Your hand and cover this brokenness with the fullness of the Savior.

The picture of our life keeps changing. Make it more like You, Lord. Help me to let go of the way I thought it would be.

EN ROUTE

Today's moving day!

Come on over to En Route.

See you after the jump.

The Start of Something New

Happy Monday, friends! There are a few changes happening in this little space of the world wide web. This site is moving, but before sending you on over here is some further ado. Or perhaps a preface for the move.

Quite honestly I find it rather disturbing how much self-promotion tempts me and other bloggers. Usually bloggers with really good things to say. It starts out like that, somebody has an important contribution and gains readers. That's great. But then the head starts to swell up and well, I'm really somebody, huh? Before you know it you find Christian leaders posting facebook updates with short pithy sayings multiple times a day and posts with shocking titles. Is it a screen for marketing or gaining readers in order to promote self or God? Although I can't label their motives (maybe they are good), I think in my case it would be self-promotion.

Yucky pride. I'm saying this all to myself, especially as I prepare to move this site over to a new spot. I have no sort of rage following but my heart is just as susceptible to pride, it's like a plant that bends toward the sun. Our stalks always want to bend towards the sun of affirmation from others, our name's notability and abilities. We need to stand straight, pointing upwards and lifting our meager stalks to heaven, confessing there is no good thing in us. Any good, any wisdom, any gain is given from the hands of our Maker, the Lord God.

Whoever we are, whatever scope of influence we may have (huge or tiny), these are our requirements:

Micah 6:8

He has told you, O man, what is good;

and what does the Lord require of you

but to do justice, and to love kindness,

and to walk humbly with your God?

If any of these requirements are met, it's only because of Christ enabling us. We are desperately wicked, desperately self-seeking. This temptation shouldn't make folks run to the hills, but continue on using their abilities and turning any praise, any affirmation directly over to the Lord Jesus, the giver of these gifts.

Whew, now I've spilled all the beans on the table.

I'll be in this space tomorrow with the new site address.

Sermon Notes (from a 4-year old)

I found Noah's sermon "notes" stuffed in the pocket of his church pants. While I do appreciate his artistic side I'm really scratching my head to find any remote connections between his notes and the sermon. 

Now that I think about it the figures on the bottom remind me of the last picture from the book "Five Little Monkeys with Nothing To Do." Hmmm....

How do you get your young ones (5 and under) to be attentive in church? Are they just there to learn the skill of sitting quietly or should we expect them to glean what they can from the sermon?

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. 

Dwell In Thee

I'm low lately. I think I might know why.  These verses from Jeremiah 17 have arrested me. Perhaps I'm dwelling in a desert place? If that's you too, read this.

Thus says the Lord:

Cursed is the man who trusts in man

and makes flesh his strength,

whose heart turns away from the Lord.

He is like a shrub in the desert,

and shall not see any good come.

He shall dwell in the parched places 

of the wilderness, 

in an uninhabited salt land.

Blessed is the man who trusts in the Lord,

whose trust is the Lord.

He is like a tree planted by water,

that sends out its roots by the stream,

and does not fear when heat comes,

for its leaves remain green,

and is not anxious in the year of drought,

for it does not cease to bear fruit.

With Darryl going back to work most of Calvin's care is on me. My arms are usually full from the waking hours until 10:30 at night. I feel tired, I worry about all sorts of things, and find myself walking by sight. It's then that my faith grows dim and all sorts of doubts rush in to take faith's place. I'm like that shrub in the desert and can't see any good coming and instead see struggling and despairing future. Wilted and defeated I withdraw even further from God and His Word.

I'd stay there too if it weren't for the love of the Father. He reaches down with His Word and puts it under my nose even when I'm reading out of habit. It breathes life back into my soul and truth fills me up.

I want to be like the tree with roots planted in Him, trusting in Him. Then I won't fear when trouble comes, my soul will be alive and I'll bear fruit. Anxious thoughts will leave. That's the power of being alive in Christ. He is the living part that infuses my wilted worrying self with life and hope.

I love this song from Kate's blog. We are never out of reach from the Lord's hand. No matter how far we travel to distant lands or leave green pastures. He leaves to look for us. This song comforts me and echoes my own restless heart. Make me to dwell in Thee.

Berry Delicious

Summer is the time for warm berry-pickin' and mouth poppin' treats. Our favorite book for the season is Blueberries for Sal by Robert McCloskey. I keep coming back to McCloskey, he's on the list of my favorite authors/illustrators and this book is one of his best. 

Join little Sal on a blueberry picking adventure. She does what all little kids do best while picking, stuffs her mouth rather than the bucket. Look familiar?

"Over on the other side of the hill, Little Sal ate all of the berries she could reach from where she was sitting, then she started out to find her mother." This is the part where Noah starts grinning.

 

Sweet!

Little Evie on her berry picking ventures. No bears though!

Berry picking with friends = fun+strawberry jam. Perfect equation. Thanks Rebecca and Emily!

Jam for the winter, yum :)

Folk Sounds

I don't know what it is about folk music but it has been growing on me over the years. Something about mandolins, fiddles, ukuleles and guitars penetrates. I think it's beautiful.

This is my new favorite baby gift, You are My Little Bird by Elizabeth Mitchell.

We listened to this on a recent road trip and LOVED it, all of us. It's sweet, whimsical, childish, folksy, and memorable.

The kids favorite is Little Liza Jane. Have a listen, like?

My favorite is Three Little Birds. Love it. Many mornings we all randomly burst into "Woke up this morning, smiled at the rising sun. Three little birds, sat on my doorstep, singing a sweet song...." What fun :).

His Creation

Even the darkness is not dark to you; 

the night is bright as the day,

for darkness is as light with you.

For you formed my inward parts;

you knitted me together in my mother's womb.

I praise you, for I am fearfully and wonderfully made.

Wonderful are your works, my soul knows it very well.

My frame was not hidden from you,

when I was being made in secret,

intricately woven in the depths of the earth.

Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

I am fearfully and wonderfully made.

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. 

It's Complicated (Being 30)

If turning thirty was just about getting older it wouldn't be so bad. The thought of being middle-aged (is that the 30's?) is surreal and leaves me feeling like I skipped a few spaces and am wearing shoes far too big for me.

See, when you're in your twenties people are forgiving, after all you're just beginning to figure out life whether that includes motherhood, marriage, career, and relationships. They smile when you show up at the church potluck with a flop of a meal, when your children arrive looking wild with hair askew, or when you pull up in a flurry of chaos. It's quickly forgiven with quiet sentiments of ahhh, she's young yet, she'll learn.  But by thirty one should have a few things figured out. Surely! Right? I should know things by now.

And that's just one very little reason why being thirty makes me want to turn around and head for the hills of the twenties. The other one's bigger.

Turning thirty makes me want to live the twenties over (well...if I could skip the four pregnancies and just have the kids). Really I'd do it over if time could work that way. I'm tempted to look over my shoulder and see Regret, Sin, and Missed Opportunity lining up and taking a number. It makes me want to make up excuses for myself and try to change the past.

Time doesn't work that way and thankfully neither does God. He takes our failures, shows us our weakness and then gives us a view of His full sufficiency. He keeps us crossing over the fence, escaping the mire of our own failures into the pastures of possibility in Christ Jesus. It's in Him we can live, move and be.


Suddenly being thirty isn't nearly as daunting. It's exciting. I feel a sense of urgency to live, live strongly, live intentionally. I desire to deepen relationships with my husband, family, sisters!, friends, church family. I want to live focused and diligent in whatever my calling for the day is. I want to step out of my comfort zone and be useful in whatever capacity He designs. And yes, I also want to be a better cook and have things a little more together. I want to try to get my kids in pajamas every night instead of wearing their clothes. I digress.

God can transform our messes into places for His work. He can take our pain and suffering and turn them into platforms of opportunity. It's what He does. I'm like a dirty old coin on which you can barely make out the image on it. I hope the thirties bring about a vigorous dusting in my life and heart so that His likeness becomes clearer to Him as He looks at me. 

Rachel Amariah

One of the many gifts God has given is a friend I've never actually met, Kendra. Many of you have also followed her story linked from my blogroll. We shared a mutual friend in Cambodia and have walked the dark pathways together and have seen the Lord working out the same things in our lives. It's hard to explain the closeness that forms from walking through the same ways at the same time.

Today at 3:45 Kendra and Dave lost Rachel Amariah from this life. Could you pray for this dear family right now? Pray for comfort as they lay their little one in the grave. Isn't she beautiful?

Loss

Calvin is still doing fantastic. Last night he slept from 11-8! I thought I woke on that solo vacation I've been dreaming about. But no, there he was snorting, smiling, and craning his head towards the light from the window. We haven't slept like that in almost two years.

I have no idea how long this good stretch will last. It's the longest it's ever been, perhaps due to the summer weather and lack or respiratory issues that always put him in such a downward spiral. I worry about this fall and winter but for now it's all enjoyment and relief in our home.

This peaceful stretch has made me realize some level of normalcy again in life and how stressful it is to be living in constant loss and suffering. I wrote a small little piece on loss. One of my weaknesses may be feeling things too much, but I that's all I know how to do. Feel it, think it, write it.

Loss comes in different ways. I've been thinking about my friend's mom with Parkinson's, a girl recently separated from her husband and struggling to care for her disabled daughter, a father fighting cancer, a family whose children have been unjustly taken away. I think all of those situations, especially those that surprise us, leave us with these sentiments.

The cool thing about having a blog is you can write what you like. So here it is folks, the editor's nightmare. And that's okay. I have no idea if it's poetry, an essay, or just freehand words. Whatever it is, it spilled out on paper and I wonder if you can relate to it too.

LOSS

Loss sweeps you off your feet.  

It comes, uninvited, with no apology

It lifts you up, tips you upside-down

and shakes you til you're empty

and it's hard to find any piece of you left.

It broadsides you. You may be 

looking up at the sun, reaching 

for the next mercy that's before you.

It hits you from behind and your feet,

they flail wildly unable to touch

the ground and find security, stability.

Survival makes them quiet. Makes

them set down beneath you and move

forward shakily on this new ground.

Your hearts stays behind but your feet

they move, driven by routine,

producing a stilted rhythm but

it's in moving that your heart keeps 

its beating and your life keeps on living.

They say time heals. Maybe it does.

But when I look back I still see

a deep, deep, hole. It has a sign

called LOSS at the edge. And a face

of a little boy there. 

What face do you see?

But these feet shuffling forward 

point my eyes to another spot. It is 

a sign with GAIN written all over.

It also has the picture of 

a little boy there. 

In the folds of His providence

there are mercy treasures and 

unexpected joys that my tired eyes 

and slow heart never thought to see.

It continues beyond even what my 

eyes can see.

                                                                    So all these holes and 
                                                             all these mercies exist, together.

The gains do not erase the loss.

And the loss opens our hearts to

gains we never imagined.

Sugar, Spice...

and everything nice.


And the tea party was just that. We had a grand time at our first real tea party put on by long-time friend and party extraordinaire, Mary. You can see her beaming below with one daughter on her lap and the other (the birthday girl) swishing around in her beautiful dress and hat.

Mary has never done anything half-way. The girls sat at tables with real china, real tea, tea sandwiches, scones, fancy teapots, fresh flowers, and more. Girls and moms both recited poetry (I crammed the night before :) and it was delightful. It's hard to be stuffy when there are chubby little fingers digging into cake and delicate cucumber sandwiches squished into hungry mouths and handfuls of cookies being grabbed by eager little hands as the silver tray passed by.

Here's the birthday girl in the middle. These girls aren't posing but they sure are falling into their roles easily! It was a treat to watch all the girl swish about and pretend to be ladies. What fun they had!

Some were not quite as enthused (hello dear Evie)...but don't they look glamorous?

These are the things that fill a girl's fancies.