It’s been three years since Noah’s open heart surgery at U of M. He’s doing well although there is a 50% chance he’s facing open heart surgery in his teens again. Last week we celebrated both birthdays of our November boys, we do not take either of lives for granted. They are a gift.
Noah’s wit, creativity and tender heart bless us every day. At the moment he is intent on becoming an archaeologist and frequently can be found debating the importance of this career with his sisters. His drawings of Lego guys and ninjas fill the refrigerator, scraps in my purse and notes by my bedside.
The other day I ran downstairs quickly in black leggings and a black top, “Mom! Where did you get that ninja suit?” he asked, thoroughly impressed.
This is a video we made after his surgery, it makes me teary to see all the Lord has brought us through.Read More
Bible reading is one of the most fruitful things I can do in my day but often it’s a struggle for me to be consistent. I’m tempted to live off the understanding I already have, the applications already found, and call it good. I attempt to live off of yesterday’s “bread”. Jesus addressed this:
“It is the Spirit who gives life; the flesh is no help at all. The words that I have spoken to you are spirit and life” (John 6:63).
Know this: every day we are being sent a thousand messages, compliments of our sinful heart and the world around us. Sin poisons and its only anecdote is Jesus. Even if we are saved, sin will have dominion over us if we don’t live according to the Spirit, i.e. we live according to our flesh. Each day we’re blasted by a thousand messages, the only way to confront and filter them is to consistently have God’s Word intercepting and telling us the truth.
Don’t know what I’m talking about?
Mmmkay, let’s start in the bathroom. You get up, hop into the shower. Inwardly sigh at your figure in the mirror, it looks more like the “before” picture of transformations. Your flesh tells you that you must be more.Being in Christ is not enough (at least in this you argue) and this is certainly not what David had in mind when he proclaimed we are fearfully and wonderfully made.
Make your way to the kitchen. Stacks of dishes are packed high and by the time you’ve kissed all the loveys out the door, you close the door and face a place that looks like a decent whirlwind just made its way through. This is so mundane. Wasn’t I made for more? Anybody can scrub floors and pack lunches. And this craving that society and our hearts has woven deep in us finds it’s way to our minds, bubbling discontent all over.
Pay a few bills, note the low balance left, let your mind wander to that modern farmhouse house of the young couple (definitely younger than you). Why do other people have it easier? How on earth can they live in a house like that? Whispers of resentment fill you, whispers sent to make you distrust God, distrust his love for you. Whispers that want to make you and stuff the center instead of God. It’s the age old trick.
Oh, lookey here, in the check-out line. You may not have realized it but you do now–you can hardly be a desirable woman (mercy, I’ve never met anybody this side of Photoshop that looks like that) and you most definitely are a yawn! in the bedroom. But don’t worry, get this magazine and join all the people have sizzling experiences every single day. Thanks, Cosmopolitan–so helpful. And fall trends? I’m guessing the winter bin that I just hauled up from the basement isn’t quite what they have in mind. All that talk about inner beauty fades into murky irrelevance.
Defeat and it’s only noon.
There’s a reason we are told to put on armor–the world is not our friend and faith doesn’t happen by osmosis. Our faith is strengthened only when we immerse ourselves with Him. His Word. His Spirit. While walking in the Word and Spirit, He equips us to deflect those arrows meant to deflate our joy and security in Christ. And Satan knows, the more he can pop that balloon, the more we will be just a shadow of the witness Christ has called (and equips) us to be.
Are we believing the lies spread thick everywhere–in our heart, the supermarket, blogs? Am I an easy target because I’m not in the Word? Are we wallowing in insecurity because we don’t understand (or want) security in Jesus? We can give those insecurities over to the cross. I need to repent and go forward leaning heavily on the One from whom all our meaning and value originate. Lord, I feel consumed with myself. What I am, what I am not. I’m seduced by the lies of my mind and the world. Set my mind on You, the only source of Truth. Forgive me, make me to walk in Your ways. Give me life according to Your Word.Read More
I hustled through the aisles at Meijer, a local grocery store, doing a desperately fast grocery run. A crowd was headed my way for dinner and I had no choice but to get a few last minute extras with baby in tow. She gives me about 10 minutes before I need to start passing crackers into her little birdie mouth; if I break a stride everyone in the store knows.
So there I was, tossing the tortillas in the cart when I stopped in my tracks. It was an old Bryan Adams song, Back to You, that stopped me and took me back. Immediately I felt deja vu, no longer was I thirty-three shopping with my fifth baby. For a moment I was seventeen all over again, feeling the same desires, remembering the life I was searching for, the one that would make me happy. The only thing missing was my friend and my 90’s “Cool Breeze” sweatshirt.
I scrounged in my purse, fished for a cracker (10-minute mark) and popped it in Violet’s mouth. I was startled by the clarity of those memories. Almost nothing I’d dreamed of has actually happened. There were no purple Jeep trips to Colorado, no marriage to the guys we thought, no fantastic careers. Had I not arrived? At all?
That night, we all cozied up in our small, still-not-fixed-up home. I pushed meds into Calvin’s feeding tube while my friend, Allyson (former Bryan Adams fan, I’m sure she’d want me to say that) was busy making sure her son wasn’t scarfing all the toys from our house into his pockets. Our babies were playing by the steps, making escape attempts. Darryl sat on the couch, exhausted from a busy week at work, Bud was feeding their three littles. More dear friends from our lives in Cambodia joined us for dinner and fellowship.
The house was bursting at the seams. And so was my heart.
Almost nothing of what I’d dreamed of has come true. And I remember those desire so fervently, I could taste them. Really.
But God has given me more. He’s changed almost every desire of my heart. He’s given me things I thought were curses and turned them into some of the deepest joys of my life. He’s not withheld pain, sacrifice–in short, bearing our cross, but His purpose is good.
That’s the thing with being a Christian, there is nothing, NOTHING, in our lives that is not material for God to work with. Material that he uses to transform us, to change us from level of glory to another. Take all your failures, desires (good and bad), goals and surrender them to the Cross. You will get something much better in return.
He may not give you the gifts you think you need. He may not fill your life with the realization of dreams you’ve had, but it’s only because He has something better in mind. Can you see that?
How can we be sure? Because He gave his best, his nearest and dearest (Jesus!) to us–folks who saw no beauty in him, who rejected Him. He is so intent on us beholding the beauty of this gift, he will do whatever it takes to get our eyes to see Jesus. And as we turn and look at this gift, this divinity and humanity on the cross, the Spirit strives in our hearts. Changing our desires, filling us with longing for Him, forever re-directing our lives.
He gives us more (even when it feel less…)
more than dreams (real, real hope and beauty)
more than gifts (they only point to Him)
God give us Himself (and then there is life).
Guilt feelings plague many special needs parents. Guilt that we are not doing enough, guilt when we are too tired to do one more therapy session and pick up a book instead. Even deeper, fear that we caused our kid’s disability. Irrational. Out of our hands. But real.
Sometimes the visits catch me off guard. Just when I think I’ve said good-bye to it, it comes back.
It came again last week in the middle of the night. I woke up disoriented with my heart racing in my chest. The moonlight made its way through the mesh curtain and gave a muted glow to Calvin’s silhouette. My hand found its way to his chest and I waited for it to rise and fall. His little body moved quietly, breathing in and out, in and out.
The familiar screen-roll began to play, uninvited and impossible to stop. That’s when I know the visitor is back.
The rewind of my pregnancy started, pausing at each possible thing I could have done wrong. Something drastic enough that could rob a little boy of his life. Something drastic enough to fill our lives with the words a parent never wants to hear: microcephaly, brain damage, spasticity, developmental delay, brain differences. The weight of responsibility overwhelms and the grief overpowers.
My eyes closed and searched for sleep, for relief, but all I could see was a woman, pregnant. And she looked an awful lot like me.
The rewind slowed and I could see myself taking care of Evie, all covered in a rash. That’s it, I should have stayed away. I should have washed my hands better. I should have…
I saw myself running up and down the steep stairs a hundred times a day. I did too much. I should have taken it easy. And I want to tell her, “Walk up the stairs. Stop running!” But time gone by doesn’t listen and the woman I see keeps running up and down the stairs.
Darryl stirred beside me in bed and I remembered his words, “Don’t go down that road, Kara. It’s a road full of lies and leads to nowhere.”
But the rewind continued even though I wanted so badly to turn it off. It started to swirl more quickly and the accusations came faster, “Medication. Surely it was medication you took.” “Cambodia? Pregnant in Cambodia? How irresponsible!” I find myself beaten down by this visitor, Guilt, he’s no friend.
The doctor’s questions accused me, “Did you take drugs during this pregnancy?” He looked at me over his glasses waiting for my reply. And I wanted to weep. Nothing could have been further from the truth.
The screenplay jumped ahead and I found myself in the neurologist’s office with a six-month old boy in my arms. “It’s not your fault,” she said. She sighed feeling the heaviness in the room, “This is so rare, the chances of it happening are…” and she paused, “I don’t even want to tell you the chances because you’ll feel singled out, one in a million.”
Darryl woke up and saw me, and he knew. He knew the visitor was here. “It’s not your fault,” he whispered. And again, “It’s not your fault.”
The screenplay halted. My eyes watched our little boy sleeping peacefully and I rubbed my hand through his soft hair. “I’m sorry, Calvin. So sorry.” And all the while in my heart I cried, “Take this Lord, it’s too heavy for me.”
Somehow sleep found me again, wrapped in my husband’s warm arms with eyes closed. All of us lying in the muted moonlight and filling the air with quiet breaths, in and out. In and out.
I’ve come a long ways but still feel guilt at unpredictable times. Like picking up my kids at school and watching the pre-K class running to grab their backpacks. And he’s not there with them. He’s at home in his wheelchair or laying on his bed with breathing machines. It kicks me in the gut, this guilt. How can we live with it?
I write about it in Living With Guilt.Read More
She greeted me with a wide smile and opened the door to their cozy house in rural Ontario. We sat sipping Timmy’s coffee and juggling each other’s little ones in our arms, husbands on one side and wives on another. We hardly knew one another, yet uniquely knew each other’s daily struggles.
This road we walk has few travelers, it’s always special to meet each other on the way. We’d all choose a different road, but here we are and it makes us hug when we meet. It takes one to know one, these travelers.
I held her Charlotte in my arms as she held my Calvin. Her legs were chubby and hair a soft curly brown with a little pigtail right on top. Perfect for snuggling. I could see the fierce love from her mom and dad mixed with frustration. Frustration as we stand helplessly by, wanting to make everything right with our kids but not able too. Smiles that hide a thousand tears and sleepless nights.
Charlotte coughed and they sprang into action, obvious they’d done this a thousand times before. Matching suction machines sat on the coffee table, they grabbed hers and quickly eased her breathing. This constant stress, I recognized it. They were used to it too, in an exhausted sort of way. The weird life of being an ICU nurse and quickly reverting back to conversation and coffee in between crisis of choking, going blue, and seizures. Happening so often that it almost feels normal to have your child struggle for air.
I wonder if heaven seems sweeter to all of us who anticipate it for our children. And simultaneously dreading our loss. That’s the thing. A parent’s love for a child is just that. Love. A loss is not made less because the child was ill or had special needs. There is a burden of care, but there is never a burden of their life. They are wanted, they are loved.
Those days of constant stress have faded for us since Calvin’s airway stabilized. But they are still in the thick of it. Trying to maintain family life, paying the bills, taking care of the baby in the midst of circumstances most people cannot handle emotionally or physically.
Darryl knew the tension on the father’s face. Torn between the impossible task of doing your work while worrying about your wife’s load and constantly rushing home to help rescue the little one. It puts a man in a hard spot, watching his family struggle. Calls to customers take second place and work goes unfinished while he holds his family together.
When you are in the survival mode, constantly rescuing your baby with no end in sight, gifts are like heaven sent reminders that although you may feel very alone, you are not. Reminders that God still cares for you and sees your every need. I will never forget those days opening the mailbox and finding gifts to cover daily expenses, mortgage payments, gas cards, restaurant cards. They were like life boats sent out to us while we were sinking. It was as if people really did understand, really did know that this living and providing was almost impossible while trying to sustain Calvin’s life.
Last night during devotions I read the story of Barnabas to the kids. Barnabas was sent out by the church in Jerusalem as a missionary to the church in Antioch. The church grew in faith. Later they received news that there was a famine in Jerusalem. What did they do? Sent Barnabas back with love gifts for the believers at Jerusalem. I love the picture it gives us of believer’s hearts, ready to give, eager to show evidences of Jesus’ love in their life.
“It’s no wonder that Christianity spread rapidly throughout the ancient world, even though there were few organized missionary or evangelism programs. The love they practiced drew the attention of the world, just as Jesus said it would.”
Let us be often in prayer, gracious in our gifts, and overflowing in love for one another.Read More
It’s funny how there are preludes in life.
In Asia I had to get used to having my personal space bubble invaded. Maybe popped is a better word. The aisles in the market places were close; meandering beneath leaky roofs, watching for beggars along the floor and being jostled by fellow market-goers was quite different than the space we enjoy while shopping in America. If one bumps into someone in the aisles at Meijer there is a strong apology, “Oh, I’m so sorry! I didn’t see you!” In Asia bumping, touching and leaning against another is not even acknowledged.
If you do happen to find a bit of space in a department store you will soon be followed closely (as in several inches) by an employee. It’s considered good customer service! Some days I would feel claustrophobic, if only I could just get some space.
At home it was the same story, and not from the three little ones about me. Each morning I would wake up to having several people in the kitchen. Our home was a townhouse with the backdoor connected to a shared laundry and cooking area. Neighbors and helpers would be busy slicing up fresh fish, grinding chilis, hanging laundry in anything but quiet morning voices. I’d stumble about in my pajamas while getting the three little ones started for the day, trying to participate as little as possible in conversation and still not be rude. Give me another hour and I’m yours.
The prelude part? Today I’m in my house. In America. Pajamas? Check. And again there is someone in my kitchen. This time it’s not the neighbors, it’s a nurse.
Calvin’s care nearly drove me to despair in the early days. He was constantly coding, we were ICU nurses without ever catching a break. When nurses came into our home I was relieved. And simultaneously resentful.
Many mornings I would retreat to my room or cry freely in a hot shower. I didn’t hate the nurses. I hated that I had to have a nurse in the home. I didn’t want to share my personal space with people freely coming and going, we were a job to them but this was my life. This was their case but it was my son.
Orienting new nurses was hard. Calvin is unique in his needs, his seizures atypical and it takes several weeks before you can read him. Sometimes nurses would be doing stretching and playing a game with him and happily announce, “He’s laughing!” It was hard to say, “Please stop, I know it looks like he’s enjoying it but he actually often laughs when he has pain. It’s hurting him.” And I felt rude and guilty that Calvin was being cared for by someone who didn’t know him like I did.
“Make sure you use the nursing, you need a break!” well-meaning friends would say. But what if it’s at the risk of your kid’s comfort? Slowly each nurse began to learn his cues. They knew that when his eyes dropped and stayed down to lay him on his back and give him rescue meds. They learned that he loves music while he’s doing his treatments. They even began to relax as the kids jumped all around him on the bed.
Some nurses nearly had a heart-attack caring for him. It’s not easy to watch a kid struggling to breathe or having seizures. It’s not easy to watch an adorable kid with brown curly hair and huge smile succumb to progressive lung disease. It’s not easy to realize you can do nothing when the alarms are beeping because all is not well and there’s nothing left to do. Except watch and hug and comfort.
Some nurses are not a good fit. I had a hard time keeping my cool as one nurse nonchalantly reported to us that Calvin was not breathing well as she texted friends on her phone. Calvin was on the couch, pale and struggling for every breath. She didn’t come back.
Nearly two years later after nurses first started entering our home, we’ve got a groove. There are a few main nurses that care for Calvin, anywhere from 4-8 hours during the weekdays. They are our life-savers
They know Calvin’s cues, his complicated medication regimes and nebulizer treatments. They know when he’s happy or when he needs a little extra love. When Calvin has been very fragile there are tears in their eyes. They treat him as if he is a kid, not just a case. A boy who wants to have fun, a boy who wants to connect.
My other kid’s cry foul if they get home and they’ve missed the nurse. They love to sit and chat, tell them about their new school, their latest exploit or ask questions. They add fun to our days. Once while at an animal park, the nurse insisted on buying the seed sticks for the kids to try. What you don’t see in the picture is the nurse laughing and laughing as the birds flocked us, Calvin and his chair.
I’m glad they are in my home. (Even if I am still in pajamas when they arrive.) I haven’t always said this, but I’ve mostly adjusted and we happen to have some exceptional nurses.
Darryl and I were talking into the wee hours one night. Having conversations no parent wants to have–funeral arrangements. Maybe Calvin will have ten more years, maybe not. Either way it’s an expense nobody wants to save for, an event nobody wants to plan.
At some point I rolled over in surprise. “Darryl, what about the nurses?” In many ways they will have deep grief too. They’ve ruffled their hands through his hair countless times, rocked him and sang joy into his days and stood with me as he left for school.
That’s when I realized, they’d have to be sitting right with us–they’re like family. They share our joy and they will share our sorrow.
Recently at a funeral a mom confided, “I didn’t want to take the kids, it’s too scary for them.” I understand that sentiment–the desire to protect our kids from anything that would jeopardize their happiness. But when we do this, we are failing to prepare our kids.
There is no better time or place for kids to understand hard things (illness , disability and even death) than when they are young and have parents shepherding them.
In our effort to protect our children and give them a happy childhood, we actually set them up for failure when we isolate them from hard things. Disappointments and sorrows will inevitably weave themselves into their lives, we need to override that initial response of evading any sadness that could upset our child and instead walk them through scary or sad situations.
Sure, I would love it if my kid never got picked on at the playground, if they never flunked a test or were crushed by a relationship. Statistically, those things are all going to happen. There will always be “bad” things that I can’t fix for them. My job is to teach them how to face disappointment and teach them ways to respond, in the little and big things.
Once our children were able to be taught simply (age 4), we brought them with us to funerals. We’ve faced hard questions from them at first, along with perplexed looks and tears. Our three oldest (10, 7, 6) are still unsettled after a funeral home, but now there is a growing understanding and realization of the issues of life and death.
Before attending a funeral visitation talk about appropriate things to say or do (a simple hug) and what to expect. What better time is there to teach what it means to “weep with those who weep” and to bear the burdens of others? Talk about the connection between body and soul, why we honor the body at a funeral and the final resurrection.
On the way home sing together, pray for the family and answer any questions they have. It is a good time to give them reflective questions: Are you ready to meet God? Would you be living differently if you knew this was your very last day? How can we show love and kindness to those grieving?
Later over devotions lead discussions with questions: Why is Jesus our only hope in life? In death? Why do people die even when so many people have prayed they would live? What does the Bible say about those that die “in the Lord”? What does the Bible say about those who don’t? What special promises does God give to the broken-hearted?
Show your child extra love and support. Give them hugs, stay a little longer at their bedside, read God’s Word together, pray together. Let your kids see you cry and dry their tears when they cry.
At first it might feel awkward to talk about hard things and to ask such personal questions, but I think you will find the more you do this and incorporate it into daily life, conversation flows and the your kids will open up more about what they really think and feel.
Pain is real. And the hope we have in Jesus is real too.
Don’t hide the first and always live in the reality of the latter.