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.
The past eight weeks Calvin has been free from infections in his lungs. This is our longest stretch; we’ve have soaked up and relished every single second. With his lungs clear and breathing so much easier, other parts of his personality and body have rejuvenated. He wants to stand all the time and his legs jerk like crazy when Darryl comes in the door. His grin stretches from ear to ear as the kids help him unbend and stretch his stiff legs in the morning. We’ve made almost every evening service at church with him and through many services haven’t needed to bring him out even once for suctioning. I feel like we are in the “green pastures” of Psalm 23.
Last night in the evening service the minister asked in a loud and probing way, “Have you experienced the mercies of God?” Calvin, who had been sitting quietly, joyfully let out a long and loud, “Aaaaah!”
Afterward my family came over for coffee. We were singing together one of my favorite hymns, How Firm a Foundation. As we sang, “Fear not, I am with thee; oh, be not dismayed, For I am thy God and will still give thee aid. I’ll strengthen thee, help thee, and cause thee to stand, upheld by my righteous, omnipotent hand”, he joined in with noises of joy we rarely hear–such enthusiasm!
I don’t know if it’s coincidental, maybe it it. But I don’t doubt that he could very well know these mercies of God deeply.
I found out later my sister-in-law caught it on video. It brings to my mind John 9:27, “And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”Read More
It is night. And all is mostly quiet, the little chicks (of the human sort) are tucked in and my coffee is nearly at the bottom of my favorite cracked mug. Our little space is showing the effects of kids living fully: books piled high and some left open, the vacuum is stranded near the stairs waiting to be used or put away, the coffee table is covered with stickers and drawings, a hairbrush and toy shark, church history books and a pastry brush.
Tonight the mess isn’t getting to me. It’s reminding me that life is so very full and this growing season is overflowing with activity. I ran out this morning to grab a gallon of milk for breakfast and came back to find all the kids gathered in the living room ready to sing happy birthday. Sophie had carried(!) Calvin out, put on his paci-muir (the valve that lets him make sound) and Violet was looking wide-eyed at me with a dazed grin. Halfway through the song one daughter started crying (breakfast wasn’t happening soon enough) and then Violet joined in.
Our kids have never been so needy and at the same time we as a couple have never been so busy. I’ve learned this: when your husband starts a business you learn to pray literally for your daily bread, you strip away all unnecessary items and obligations, and realize earnest dependence on God for everything. It seems the Lord is eager to have us see His provision in every area of our lives. I’ve learned that lean times are very good growing times. And yes, stressful. But we are loving the creativity that now infuses our daily lives with the table business. It’s rewarding to see talents we didn’t know existed from one another!
Calvin has grown so much, which means it is time for different equipment. I wish I could invent expandable walls! Between the baby gear for Violet and the mobility equipment for Calvin we are bursting at the seams. Next week we have to order a hoyer lift, a piece of equipment I never thought we’d need. Sophie was very matter-of-fact at the dinner table, “He might be able to die of old age.”
While I’m skeptical of that, we are so thrilled that he’s doing so well. We are going to get a shower chair as well, it’s getting far too difficult to keep putting him in the bath. He is dead weight and easily falls to the side which puts him in danger of aspirating water through his trach. He has a shower in his room which currently serves as storage to his stander and where the hoyer is going to have to fit.
Darryl is also going to build a ramp in the garage. The nurses are having a harder time lifting him out of his chair and carrying him in. It also puts him more at risk for joints being dislocated or his trach popping out. Or getting his feeding tube pulled out which has been happening often lately.
With Darryl so focused on the business and Violet in the mix I have come to rely heavily on nurses to help me with Calvin’s care. His care is constant, every moment I need to be paying attention to his breathing, if he needs to be suctioned, watch for seizures, etc. It’s a huge relief to be able to let it go into the hands of our very capable nurses so I can focus on the other kids and tackle the t0-do list.
For friends afar, here’s your monthly overdose of photos.
Mission friends have been on my mind all week. Especially with Dr. Kent Brantly fighting for his life.
This post by Cory Jones convicted me and resonated strongly with me:
“I don’t want Kent to die because we need people who are living now like Jesus, without much concern for a proper eschatological view or theology of infant baptism or clearly spelled out explanation of hell and how one arrives there. Sure those things are important, but only if they get you off the couch and into a world full of hurt. We need people who aren’t satisfied with a safe, comfortable theology that gives them permission to lead a safe, comfortable life. We need people who are willing to stand toe-to-toe with death and pain and disease and brokenness because their love for life is so fierce.” Read the whole article here.
Why do I let myself be a seeker of my own comfort and not look to my neighbor? Am I afraid to take up my cross? Do I really live out what I profess?
Why do I live so protectively when there is nothing to lose and all to be gained in following Jesus?
Even if we lose our life, we are never lost if we are in Christ.Read More