I wrote this piece three years ago for the Christian Pundit.
Writing about God’s provisions is two-sided for me. On one hand, it is a way to point others to our great God and say “Look! Look what He can do! He is faithful, He is constant, He is your provider. Let me tell you what He’s done for me!” But I’ve been in a place where stories of God’s provisions for others taunted me. They were like bitter drops on my thirsty soul–a soul that was feeling left out on the line, parched, forgotten by God. A detail forgotten in the Great Care Plan, providence.
My husband, Darryl, and I had experienced the close and gracious hand of God in unique way as we served in mission positions in Phnom Penh, Cambodia for five years. But when the Lord gave a unique gift in our fourth child, Calvin Luke, it seemed like His hand of provision drifted away and instead began a very painful process of stripping us down to the bare, raw parts of life and soul. Calvin was born in Bangkok, Thailand with microcephaly (small head) and severe brain damage. Today Calvin is nearing three years of age. He’s nearly blind and cannot roll, hold a toy, lift his head, or perform any sort of purposeful movement (except for opening his mouth to kiss us, sweet eh?). He cannot eat by mouth and has trouble with an airway that collapses under stress. We are now living in the United States so he can receive proper medical care.
The time between birth and the present have the closest misery to hell we’ve ever experienced. Our Father saw fit to take away our life in Cambodia. A life we were thriving in and a ministry bearing fruit. He stripped us of a job and income. He stripped me of the ability to mother my other three young children, they were largely underfoot and ignored as we struggled to keep our youngest alive. He stripped my illusion that God would keep my children safe from harm (especially felt when our other son, Noah, had to undergo major open heart surgery in the midst of all this). He withheld his deliverance and pressed us harder and harder until it felt easier to die than face another day.
Stories of provision stung in that place. Stories of God giving fulness when my plate was empty and my soul so hungry and my body so weary. “Just a crumb, Lord, just a crumb?” I’d plead. Did God love other believers better than me? Why was His hand so hard, why did He return our confident prayers with a staggering blow? Mercy, show me mercy. I became bosom friends with David, and met with him in the Psalms. He gave words to my pain and frustration: “What profit is there in my death, if I go down to the pit? Will the dust praise you? Will it tell of your faithfulness? Hear O Lord and be merciful to me! O Lord, be my helper” (Psalm 30:8-10).
David wrestled with God, argued or made a case to God for His provision while David was in an undelivered state. And this became our pattern in pleading for our heavenly Father’s provision with our souls and material needs. When I began to question if the Lord was really hearing or if the Lord was there at all: “Keep me Lord, I am full of unbelief and doubt and anger. I will wander far from You if you do not keep me.” When we’d wake to another morning of seizures and felt too weary to lift a foot from bed: “Where is the joy that comes in the morning? Give us the morning, Lord, put an end to this long night.” When my soul would drown in sorrow and be threatened by strong unbelief: “Lord you’ve said that we can cast our burden on you and you will sustain us! Sustain then Lord, my feet are slipping. Take this burden.”
We would preach God’s very words of truth and provision to ourselves constantly. We were standing in the desert and knew He could make an oasis in the soul-searing pain. We’d remind each other that there would come an end to this, even if we never knew God’s deliverance on this side of the grave, there would be an eternal provision, an eternal restoration: “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you” (1 Peter 5:10). When we were pressed hard by cold providence we reminded each other of the Lord’s love and tenderness of us: “He who did not spare his own Son but gave him up for us all, how will he not graciously give us all things?” When prayer seemed pointless: “Trust in him at all times, O people; pour out your heart before him; God is a refuge for us” (Psalm 62:8).
Do you see how He has already made every provision for our souls in his Word? It waits for faith to be made alive and real and comforting to the soul. The very words we would remind ourselves of were works of His hands to draw us closer and closer as we looked over our shoulders to unbelief and fear. He kept our souls. He is keeping our souls. Yesterday’s provisions are not enough for today. I need fresh provision each and every day. My soul wilts and my heart feels heavy as I look at circumstances but His word places exuberant joy and praise in my heart. It gives me life each day. This is His provision. He has turned the painful realities into real places of spirit-work. Places where we can meet Him more clearly with the layers of distraction peeled away. He has made our broken jars of clay alive with the light within. This is His provision.
I could tell you stories of the “rain of mercy” God gave to our family after that dry hard time. I could tell you about the checks that came in the mail so we could pay rent, buy groceries, and get hair-cuts. I could tell you about the check that came from a stranger that refilled the savings account which had completely emptied from medical bills–the exact amount we had to start with. I could tell you about the first house that came up in our budget, how it had a handicap room on the main floor and a playground across the street–two things I’d specifically been praying for. I could tell you about house-hunting and how God gave us the house we are now living in–the very house we’d been renting. But I wonder if you too are in that dry place–the place where no material provisions have been made. I wonder if you too feel strung out and left to dry. Would these stories be salt in your wounds?
Take heart my friend. Open His Word, there is provision for you too. It’s better provision than money or houses or health. It’s soul provision–real live, spirit-accompanied soul provision. Wrestle with God for it. He can and will saturate the thirsty soul with His provision. “But may all who see you rejoice and be glad in you; may those who love your salvation say continually, “Great is the Lord!” As for me, I am poor and needy, but the Lord takes thought for me. You are my help and my deliverer; do not delay, O my God”
We may not be taking big vacations and I may often be distracted with Calvin’s care BUT reading out loud together carries us on many adventures, gives us invaluable experiences and discussions together, and glues us together in formative ways. Here’s what we’ve been reading in the evenings…our golden time.
At first I thought this would be a rather dry book but I still popped it into my library bag. Often it’s the books you least expect to be good that capture the whole family! The story is about Charlotte, a 13-year-old upperclass girl, who travels from England to Providence, Rhode Island. She starts the journey under rather mysterious circumstances and begin a voyage that will indeed bring her to Providence but will change her completely. Be ready to feel the wind in your face, smell the stench of the brigg, and make friends with a salty crew. Full of intrigue, mystery and surprise, even your boys will love it.
Conversation Starters: At the end of the book there is a conversation waiting to be had about culture shock, how it changes us when our perspective broadens and how we react when we are misunderstood. Even if you’ve never travelled, your kids will feel the change in Charlotte, the difficulty in transition, and seeking to be understood.
It’s a book that challenges perceptions of race and class and identifying with people “like” us. It brings up a discussion of authority–“How did Charlotte react in the end? Why? What do you think about it?”
The entire family listened but I think my kids from ages 8-13 and the adults benefited most. There was lots of lively discussion along the way!
This was a wonderfully creative story filled with a bit of science-fiction, strong morals and surprise. As a parent, I usually only carry on with big thick books that are interesting. I often wanted to read ahead on my own after I’d tucked the kids in. The character development was so clever and the plot-line kept us guessing.
When a peculiar ad for gifted children appears in the newspaper, dozens of children enroll to take a series of mysterious, mind-bending tests. (And you, dear reader, can test your wits right alongside them.) But in the end just four very special children will succeed. Their challenge: to go on a secret mission that only the most intelligent and resourceful children could complete. To accomplish it they will have to go undercover at the Learning Institute for the Very Enlightened, where the only rule is that there are no rules.
As our heroes face physical and mental trials beyond their wildest imaginations, they have no choice but to turn to each other for support. But with their newfound friendship at stake, will they be able to pass the most important test of all?
Conversation Starters: Most of the time the kids only wanted to talk about which character they were like. After each of them deciding they were a mix of one or two we were able to get on other topics, but to them this was the most important discussion 😉
Some major themes that came up for us were the discussion of evil being portrayed as “good” and how most people doing evil often have convinced themselves they are doing it for the greater good. Which naturally led into a talk of communism (thanks Darryl), government structures and the use of power.
There was a lot of fun that went along with trying to solve the puzzles along with the heroes in the book. It’s a great time to talk about the way each of the characters have strengths and flaws and do a bit of self-reflection.
Again, this was perfect for my kids ages 8-13. They cannot stop talking about it!
Maybe it’s the fact that it’s a larger family like ours or perhaps it’s the way Birdsall makes the characters so alive and relatable, whatever it is–we love this series!
We stumbled upon it at the library at proceeded to go through every book together. We feel like we know the Penderwick family; my kids will frequently say things like: “Stop being so dramatic, you’re being like Jane” or “I am like Skye, I DON’T like girly things.” And on and on it goes.
The everyday mishaps, hilarity and sadness feel so real. So ordinary in the most precious way. The family is not a Christian family and you might need to guide some discussions when boyfriends come on the scene in later books, but the tried and true themes of loyalty, family bonds and the life of a sibling made the series a gem.
Conversation Starters: There are so MANY. You’ll undoubtedly start talking together about personalities (and yes, of course kids pick up the discussion of which character they most relate too), the responsibilities of older kids, the frustration and hilarity of toddlers, and how we deal with hard emotions like anger, sadness and feelings of failure. Overall, the book portrays the value of family and what it means to be a family…and there’s no end to discussion there.
This is easier reading. I’d suggest reading it to kids as young as five up to adults!
I sat in the folding chair at my kid’s school today, grinning at my son and daughter up on the stage. It was the annual Mother’s Day program and my heart overflowed watching them—my son staring at me unwavering and my daughter sneaking shy glances my way.
Next to me my other son, Calvin, sat in his wheelchair, listening to the kid’s voices fill the gym. He grinned his signature side-smile at the songs and tried to join in, vocalizing over his trach.
I felt so much joy and sorrow in one moment; joy in what is and sorrow at what’s been lost. How can a simple holiday feel so complicated?
I reached over and held his hand, letting him know I was there. And then I looked up and locked eyes with my kids on the stage, gave a big thumbs up, and let them know too, I’m here—I’m always here for you.
That’s what we do as mothers, we carry on bravely, even when our hearts feel like they might break.
We smile and tell our kids that everything will be okay, even when our world feels upside down.
We reach over and hug our child, letting them feel joy and love and save our tears for the shower.
We learn to delight in what is and let go of what illness and disability has robbed us and our kids.
We’ve learned behavioral interventions, tracheotomy care, g-tube care and have become therapists in our own right.
We stay up countless nights comforting our child through seizures, illnesses, and hospital stays.
We’ve persevered even when we wanted to run the other way.
We’ve discovered value and beauty that takes our breath away, while the world passes by.
We’ve wrestled with God in dark places and experienced grace that’s changed us.
We’ve grown through things we never thought we’d survive.
We’ve been stretched to the point we’re afraid we’ll break.
We’ve seen joy come in the morning after sorrow’s long night.
We hurt deeply.
We love deeply.
Mother’s Day; it reminds me just how complicated, lovely and rich my life is.
Are you a special needs parent?
The Grief Workshop is an opportunity for you to tell your story and embrace the joy and loss of it all–and it’s starting next week (May 16)!
Write Your Grief is a 3-week, online workshop, designed to guide you in exploring loss in a healing way. Led by Kara Dedert, you will experience the power of creative ways of expressing grief and create your own treasured compilation that tells your story. Join a dynamic group of parents of kids with special needs, dedicated to telling their story and embracing all that it holds. Learn more and register here.
Tonight found me in one of my most favorite places– in my living room, with my mom and I on opposite couches.
It’s been a comforting rhythm in my life, these talks and time with my mom. I can remember one “couch session” six years ago: I rocked Calvin in my arms and bawled my eyes out to my mom. I couldn’t bear the pain of the life Calvin was going to live. I couldn’t see over the mountain of his losses. I felt sick and didn’t see how life would be worth living if you could never express yourself, reach out for a hug or let your feet carry you on adventures. My mom sat in the pain with me.
Tonight was so different. We sat on the couches and Calvin was again in my arms. Well, sort of. His head was on the armrest and the rest of him stretched across my lap and onto the couch. He’s grown. We’ve grown.
On top of devastating loss, I feel gain too. And not because everything turned out fine; actually all of our worst fears came true. But what time and grace had to show me was the value and joy Calvin’s life holds despite severe disabilities. I perceived basic abilities equalled happiness. In some ways it does, but Calvin has so many other unexpected abilities that bring a totally different type of joy.
Our families and friends have come together and heaped out love on us and Calvin, it’s shown us the depth of their loyalty and love. God used Calvin to show us this beautiful gift.
I would do anything to hear him say, “Mom!” or to have him reach up and hug me. But he’s shown us unconditional love and joy in who we are with wide, warm eyes, affectionate kisses, and legs that jerk in unrestrained excitement. His love has been so pure and whole-hearted, it’s made me grasp just a little bit more the nature of God’s love.
Every night, Calvin and his sister are snuggled up tight. She told me, “I don’t know why I always hold his hand, I think it’s because he makes me feel safe.” Funny, isn’t it? The most defenseless person in our house makes the most strong-spirited one feel safe.
There are so many more, but for tonight this is what comes to mind. I thought I was dealing with wreckage that could never be salvaged into one ounce of good. But there is so much beauty here in the brokenness and the hurt of it all, I’m a little stunned with it all.
I don’t think of loss and joy as two separate categories with tally marks in each leaving us to figure out which one is greater. Instead, I see them as two lines that follow our storyline, both very real and both very much a part of us.
As Calvin’s disease progresses, we’re making changes in his life. Loss continues to be a part of our story, Calvin’s story. But today, all I feel is overwhelming thankfulness for the gift of his life.
Write Your Grief is a 3-week, online workshop, designed to guide you in exploring loss in a healing way. Led by Kara Dedert, you will experience the power of using creative ways to express grief and create your own treasured compilation that tells your story. Join a dynamic group of parents of kids with special needs, dedicated to telling their story and embracing all that it holds. Learn more and register here.
dusk in the sonoran desert // karadedert
No matter how much time
Like a shooting star
it’s what I fear
You will see
us – pain
But today I stare
Do you doubt God could ever love someone like you–with all the mess-ups and failures that stick to your side? Maybe you imagine you’ve just barely squeaked in the back door of God’s grace.
But parenting Calvin has given me a glimpse into the breath-taking love God has for us in Christ Jesus. It’s made me see the door is flung wide open in Him.
One sight of this mercy, grace and love extended to us as adopted sons and daughters will take your breath away.
We held the glowing cake in his line of remaining vision, behind him and to the left. Four candles flickered as the air swept currents of “Happy Birthday” notes swirling around our living room. Calvin’s eyes danced with excitement at the candles, his grandpa’s arms and the siblings crowded around.
This fourth birthday was the first to see him alert and lively, not teetering on the brink of life. All night long he tried to talk loudly, waved his arms in short uncoordinated little punches and kicked his legs in jerky stiff movements. Nothing works the way it should but it was pure beauty to his family.
This daily care of Calvin, this daily entering his world and being satisfied with altered joys is giving us glimpses of the Father’s love that take our breath away. It’s not made up fancy, it’s real hard-core Bible truth, this Father-love and delight in His own.
My eyes have read the words over and over but my heart and mind dismiss this grace when I think of my heavenly Father thinking of me. I forget what it means to be “in Christ” and the satisfaction accomplished for sinners.
An unspoken theology follows my footsteps and steals joy and isolates me from God (and I would bet a good number of you too). It tells me this perfect, awesome God rather reluctantly saved me. And once saved He now puts up with me with much frustration and disappointment as I fall often on the road of life.
I live under the law and fail to grasp the grace there is for me in Jesus. I hardly dare whisper “He delights in me! He loves me!” I dishonor His love and Christ’s work when I fail to believe it.
What if Calvin were to respond to me that way? What if he stopped moving and responding to me because he was ashamed of his movements being uncoordinated, awkward and impaired? What if he limited his responses to me because of it? It would break my heart!
I look for and find delight in every expression he gives. I laugh and smile to see him filled with joy that comes from any exercise of his rigid body; I rejoice in him regardless of improper, uncoordinated and clumsy movement. It’s not a perfect example, this earthly relationship, but it gives me a glimpse into the immensity of the Father’s love and delight in us because of Christ.
Even after grace our spiritual deformities leave us crippled with weakness and sin. But this does not make God dismissive or distant from us, ”As a father shows compassion to his children, so the Lord shows compassion to those who fear him. For he knows our frame; he remembers that we are dust.” Ps. 103:14
My praise is too rusty, fickle and feeble. I fall, I fail, I’m slow to learn. But the Father tenderly comes and turns my eyes to Jesus again. He sees life springing in my heart, the seeds he planted and He longs for fullness.
These signs of life, responses to grace and love are joy to our Father’s heart. Why? Because we’re so wonderful? Not so much, rather He delights in us because of the satisfaction of Christ on our behalf.
As we hope in Christ, His reflective glory is written upon us and brings praise to the Father (Ephesians 1!). He sees the stirrings of life and the resemblance of His likeness in us as we respond to His grace. He delights in us as we delight in Him.
“The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love.” Zeph. 3:17
I get it. When you stop for a moment and say, “take care of yourself, OK?”, you’re telling me you care. And I’m so glad you stopped instead of walking by. But can I let you in on something?
I’m trying to take care of myself, really I am. On days where my son’s health is decently stable I think I actually do. I exercise, cook meals, do laundry, pick up kids and even sneak in an extra long shower.
But the rest of the time, I’m just trying to keep my kid breathing, medications stocked and administered, seizures monitored, appointments rescheduled, and giving him the best life possible. Those days, finding a clean pair of socks is about the best self-care I can manage.
I’m sure you’ve been in that situation where someone enters a room carrying a huge load of boxes. The person looks a little nervous (something is definitely going to fall) and their face is strained with the effort of carrying the load.
As you’re sitting in a comfy chair in the reception area you call out, “Don’t hurt yourself or drop anything!”.
Considerate? Maybe. Helpful? No.
Obviously the guy doesn’t want to hurt himself or drop anything.
He doesn’t need to be reminded of that, what he needs is a hand!
When we find ourselves in that situation, most of us would jump up and grab the door or take something off of his hands. That’s help. That’s concern in action.
Moms of special needs kids often feel like that guy carrying all the boxes. We’re maxed out and struggle to meet the demands of each day. It’s not just about managing our time better or learning ways to take care of ourselves–we think about those things all the time!
There is simply more demanded from us than one person can do.
For some moms, there are behavior issues that never. let. up. For others of us, it’s not possible to leave our kid’s with family or friends because of our child’s complex needs. Some live in a state of constant anxiety, living from one behavioral or medical crisis to another.
Being a parent is hard. But being the parent of a child with special needs can seem downright impossible. We need you on our team, with the big and little details. 1 John 3:18 reminds us to “not love in word or talk but in deed and in truth.” When you take the time and effort to tangibly show families that you care, you demonstrate the very love of Christ.
If you know a family with special needs in the mix, here are ways you can jump up and help:
1. Just ask. Ask how they’re doing, ask if there’s something specific you could do for them. If you don’t have ideas, see numbers 2-10.
2. Drop off a fun box for the kids! A lot of us fail to provide “fun” opportunities for the siblings. Once a family left a package on our front door filled pillow pets, kits and books for each of the kids.
3. Drop off an “I’m thinking of you” gift. I’ve never heard of someone NOT loving a spontaneous coffee or flowers!
4. Befriend families that have children with special needs. Invite them over for a meal. Include the child with special needs in birthday parties. One mom said, “Give me the opportunity to decline, if necessary, but don’t exclude us altogether because of our special needs.”
5. Pray for the parents of children with special needs: that they will be wise and experience God’s grace. Let these parents know that you are praying for them through an e-mail or note. Calvin hasn’t been able to attend church for several months due to illness; it brought tears to my eyes when he received a brightly decorated card from the kids in his Sunday school class.
6. A warm meal is like a big hug at the end of a long day. Giving a meal allows a mom to get a break even if she can’t leave the house.
7. Gift cards for gas, groceries or restaurants are wonderful! Did you know that families with special needs often have mounting bills for therapy and equipment not covered by insurance? And most families have one parent who has left a career and financial security to meet the needs of their child.
8. Volunteer your skills. Offer to help with yard-work, fix-it projects, car repair, legal help, etc. Chances are there’s a perfect match between what you do and what the family might need. Just ask (a huge thank you to those who do!!).
9. Take me out! We’re often so involved within our four walls that we don’t do a good job initiating with our friends. Laughing and talking with friends clears our slate of stress and give us an opportunity to remember our identity is more than a “special needs parent”.
10. It’s hard to care for a medically fragile child. Most of us don’t have homes set up for shower chairs, wheelchair ramps, hoyer lifts or enough space to keep all the equipment. Maybe you’re in a place where you could give (or organize) a life-changing gift to a family. I’ve loved watching this community of Christian love surround little Pearl.
We’re not entitled to wonderful people like you, be we are SO thankful for you! Thank you for being quick to care and slow to judge. Thank you for taking time out of your life to show us you want to be a part of ours. Thank you for getting up to help us carry the load.
If you’re a special needs parent, share this with your friends and be sure to get a copy of the Insider’s Guide to Respite Care! It’s a definitive, massively helpful, easy-to-use resource that will connect you with organizations that provide respite for families like yours!
It was always there. Getting groceries, watching a gorgeous sunset, chatting at the table with family or on quiet moonlit walks: the darkness.
A few years ago I stared at the super-sized bottle of Tylenol on my counter and wondered if its promise of “Pain-Relief” would work for me. It wasn’t the pain of a migraine or an aching back that I wanted to disappear, it was the burn of searing loss that cut deep into my soul. The kind of pain that fills your dinner plate with tears, sends sleep packing and makes you wonder if you’ll ever feel anything but that searing sensation. I thought it would never leave, sure it would suck me down, chew me up and spit me back out–a cynical, bitter, joyless me.
It started six years ago when my son was born with a neurological malformation from a virus I had while pregnant. It sounds so compartmentalized on paper; in real life, it’s not. Each time I’d see a scan of his brain damage, the guilt made me nauseous. Every time his blind eyes would search for me it taunted me, he had never asked for this. I was supposed to protect him. I didn’t.
Doctors will tell you it’s not your fault. But the darkness whispers that it is. It replays the “If Only You Had…” clip every time you hear the suction machine emptying his lungs or watch his body struggle with spastic quadriplegic cerebral palsy. And when you find yourself meeting with the palliative care doctor instead of a preschool teacher, you almost lose yourself to the darkness.
Melancholy never came naturally, I was always a glass-half-full kinda gal. But I couldn’t run fast or hard enough from this anguish. At 32, I was wishing for life to be over. Even the pills doctors prescribe couldn’t fix it. I made my sisters promise that they’d take care of my kids if I couldn’t. My husband wondered if he was going to get his wife back.
Still, I wanted to fight. I was not going down easy. I have a wonderful husband and five children who move my soul every day; I wanted to be with them. It was standing at the kitchen sink that I discovered my secret weapon for the ever present despair: light. I would fight the darkness with light–I would overwhelm the sadness with the goodness and joy that follows me every day of my life.
When alarm bells rang in the night from my son’s machines, I’d run my hand through his thick hair and give thanks for the beauty of his life. My daughter’s hand would wrap his tightly in their sleep; I’d stop to wonder and give thanks that so much love could exist in so much loss. When his eyes searched for me I’d notice the warmth of his smile and his gorgeous long lashes. When his body stiffly jerked in excitement, I’d lean down so he could place his open-mouthed kiss on my cheek. When he squealed in delight I’d give thanks that there was a vibrant little boy in there, wanting to be heard.
This is the battle of light pushing back the darkness. The darkness is thick but when you turn just a few degrees, there is so much light. Your eyes no longer become accustomed to the darkness, instead they focus on the light of joy and goodness spilling everywhere. No longer do I squint at the brightness; my eyes are wide open and the warmth of that light has seeped into the very spaces of that searing loss. The cracks fill up with joy and healing, even though the scars remain.
The reality is what it is. My son’s days will come to an end sooner than later. And no matter how much I wish I hadn’t even gotten a virus, I did. The darkness has had its victory, but not the final say. I will spend every day thanking God for the gift of Calvin’s life. My family will rejoice that we get to discover beauty and meaning in places few have ventured.
The darkness is just a few turns away but I’m not going back. There’s way too much here.
[This piece originally published here).
Deer in the headlights. Blindsided. Shocked. Suffocating pain. It’s what comes to mind when I think back to the early years of dealing with my son’s losses.
Six years ago I wandered about in a numb state, unable to wrap my head around the fact that my son had extensive brain damage and would never recover. I got up, faced the days and even attempted normal conversation but inside I wished life would end.
Today I’m better in a lot of simple ways, like wanting to get out of bed in the morning. Or sitting at the dinner table without crying. Guilt no longer haunts every waking moment and flashbacks have nearly disappeared.
My lips have remembered how to shape hearty laughter again. And often.
However, in many ways I will never be “okay” again. I’m forever altered, and I have a feeling that might be just the way God wants me to be.
This brokenness can propel us to experience the fullness of Christ more fully.
In the end it doesn’t matter how broken I am because Christ is my restoration, and I am whole in him. The days in this house may be dark with the deterioration, but the light of Christ infiltrates every moment with hope and promise.
As my son’s body deteriorates, I will rejoice that because of Christ’s resurrection, Calvin will be resurrected with a soul and body that only knows completeness and fullness.
When defeat seems to win the day with seizures, respiratory infections and damaged lungs, I will give thanks that spiritual gifts are not limited to healthy bodies and healthy minds.
When I complain and wish for a “normal” (at least a less exhausting!) life I will remind myself that this is the life Christ has called me to. This very situation in which he is eager to display his grace. I will look for that grace and not my own strength.
When Calvin struggles to breathe and I’m tempted to think God’s love is all dried up, I will sing Psalm 136 into the darkness. We will chase back the shadows with the true and living Word of God.
I will rejoice this Christmas that Jesus suffered more brokenness of soul than I will ever encounter. He suffered my brokenness. And because of that he groans in spirit for the heaviness of our suffering.
I’m no longer wishing my life would go back to “normal”. I’m not even wishing for the less-scarred, “happier” me.
Instead, I’ll pray he takes this forever-altered, broken me to show his surpassing power and grace.
For God, who said, “Let light shine out of darkness,” has shone in our hearts to give the light of the knowledge of the glory of God in the face of Jesus Christ.But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. 2 Corinthians 4:6, 7)
(This post originally appeared on Not Alone)
Partners in Care-giving
It’d been a long day at the wood-shop–Darryl came in dusty, hat tossed on the back of his head.
For me it’d been a long day on the home front–three different phone calls to the neurologist, medication adjustments plus the usual activity of five kids in one house.
“What do think about the seizures?” I asked Darryl for his opinion. He shrugged and turned his attention to the pile of mail.
“Am I making the right call? Should we take him in for another EEG?” I asked, looking for that second opinion. “If you think that’s a good idea, let’s go for it,” he replied.
I used to become frustrated with a conversation like this–they always made me feel like I was carrying the weight of Calvin’s care by myself. And from what I’ve heard from other moms, I wasn’t the only one.
Valuing Each Other’s Roles
Typically the mom is the one that goes into overdrive as soon a diagnosis is given or problem is presented. We research as if our life depended on it (sometimes it does!!), find support groups, grill specialists, and watch our kid with razor sharp eyes marking every suspecting symptom. Am I right?
We become THE expert on our kid.
And often we are frustrated if our husband does not share this same passion for solving all the problems! Maybe we even interpret it as a lack of care or love–and let them know that. We can let our assumptions drive our relationship down.
In the early years of living with disability, Darryl and I had resentment building up in our relationship over the frustrations of care-giving. It took hard and humble work to break the resentment and replace it with understanding. How?
True partnering in care-giving starts with identifying and valuing each other’s roles in care-giving. Talk together with your partner and divide up responsibilities based on time and gifting. Of course they overlap, but we have very different strengths which make for a great team when combined.
I’m better at knowing what to ask the specialists and managing medication changes. Darryl is better at doing 24-hour EEGs with Calvin and taking care of him through the night.
I’m better at implementing his strict lung treatments, Darryl is better at comforting Calvin when he is having a hard time breathing. I am better at keeping track of the logistics of Calvin’s life, Darryl is better at holding me up when I start to fall apart.
Over the years we’ve learned to value the other’s strengths; it’s taken down the walls of resentment and replaced it with respect.
Don’t Devalue Dad (or Mom)
In the special needs world there are many “tiger moms”. I think we can be our own worst enemy by unintentionally taking over the entire role of care-giving for our kid. Many men have said they feel pushed out, not needed or simply viewed as incompetent by their wives. As a result their participation drops and the mom ends up carrying the weight herself.
The lesson here is that we need each other and we need to communicate that value clearly. As any single parent of a disable child would tell you, it’s overwhelming to do it alone. If you have the privilege of having a partner, talk to him (or her) today. Identify your strengths and talk about how to optimize every day by focusing on your roles.
Pray together, be in the Word together, pray for each other. There is nothing better for a family than to have a solid team (dad and mom) leading them! There is nothing more exhausting and defeating to have a broken team leading the family in different directions.
Encourage Each Other
It doesn’t have to be grand; it’s the constant little kindnesses that can transform our relationships. Here’s some to try:
“Thanks for taking care of that phone call, it means a lot to me.”
“Can I make you a cup of tea?”
“What can I do to make your day better?”
“I think you really have a lot to offer with this…”
“Can you help me think this through?”
“Thank you for never complaining about doing…”
“I love the way you love our kid.”
“Thanks for taking care of us.”
God didn’t intend marriage to be a sore, painful experience in our lives. He gave us to each other as a gift. You’re not alone if you no longer can see the gift in your spouse, but you have every reason to believe that can be restored. Let’s talk openly (maybe I should say, listen openly?) to each other, seek the Lord together, and learn to partner with joy in the specific calling God has given you.