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How God Used a Hailstorm (in September)

Last night I woke up at 3 am to Calvin’s crying on the monitor. I found him in bed burning up and having seizures which left him trembling from head to toe and largely unable to respond to me. I wasn’t shocked, the past week he’d been struggling with respiratory issues but it seemed like the antibiotics were “keeping the lid” on it.

After giving rescue seizure meds, Tylenol and a good old momma hug he finally settled in again around 5 am. Today he’s pale, has low oxygen levels and spent most of the day sleeping (seizures wipe him out).

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Even though this isn’t anything new, the call to renew my trust in God and his care is a daily call to faith. It’s much easier to believe we’re alone, forgotten by God and have every reason to despair when we look at what we see. 

It’s easy to listen to whispers of despair telling us our faith is useless, that our so-called God is a fantasy and that our hope of redemption is just a way to plug through the pain.

And it’s exactly in these whispers of despair that God calls us to walk by faith. Circumstances are real, but just part of the story. The bigger story is God’s forever promises to his people, secured by Jesus:

He will never leave me or forsake me.

He is transforming me from one glory to another.

When I go through deep water, he is with me.

He intends goodness and mercy all the days of my life, even when he uses sorrow and pain to make that a reality.

For most of us, our struggles are private, confined to the walls of our homes or our hearts. We’re called to a simple, quiet obedience in God. It honors him, his word and grows our faith.

However, there are times when God pulls back the curtain of the everyday and gives tangible testimony to his presence and care. He allows faith to be sight, even for a moment, reminding us to renew our faith and trust in him.

Two weeks ago that happened. God pulled back the murky curtain of uncertain circumstances and gave us a sweeping view of his provision.

Carly and I had spent a lot of time researching options for the van, measuring his wheelchair and trying to figure out creative alternatives. Most people use wheelchair accessible minivans but with five kids, they were out for us. Our next options were a shuttle bus (the kids thought this would be the coolest thing ever) or a Ford Transit.

What we didn’t realize was the Transit comes in different roof sizes, low and mid roof. After talking with the mobility center, we realized we wouldn’t be able to install the lift in the low roof van. We headed back to the dealership and found one mid-roof passenger van. Our hearts sank when we realized the price was 8-10 thousand more than what we had.

We went home not sure what the next step was going to be. The mid-roof Ford Transit is hard to find, after searching online we found only a few in the US for sale in other states. Most customers get them made to order, they aren’t just sitting around on a dealer’s lot. Used ones are hard to come by since they just started making them in 2015.

About an hour after we got home, Carly got a call from Aaron at Tony Betten Ford.

“You’re not going to believe this,” he said. “We’ve got a truck here, unloading around 8 mid-roof Ford Transits. And they’re all passenger vans, not cargo.”

We went back. Sure enough, lined up in the lot were 8 of the exact vehicles we needed. Every color and option was available.

But the price. That was still an impossibility.

“Yeah, it’s kinda crazy,” Aaron said, “these are actually brand-new vans but we’re selling them as used. They were sitting on another lot and apparently they were damaged by a hailstorm so we’re selling them at a much lower price. We’ll take out all the dents, you won’t even notice.”

Huh.

So let me get that straight. An hour after we left, 8 vans of the exact type we needed, were dropped off unexpectedly at that exact car lot. All of them passenger vans with an extended base for a wheelchair lift. All of them happened to be in a hailstorm which happened to reduce the price to what we had planned on.

It was excessive, undeserved. But then again, that’s what grace always is.  

“You know that what happened is pretty crazy, right?” Aaron said as we signed the papers a week later. “I haven’t had those things on my lot for a year and a half. Then, an hour after you left, I’ve got eight.”

It’s not every day that God sends these tangible reminders of his care and provision. But when he does, it is a grace that gives boldness to our steps and a fresh reminder of his presence during weary nights and lonely roads.

So these days, we are thanking God for his provision through an unlikely source: a hailstorm. In September.

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This is our super helpful and proficient salesman, Aaron Powers, who got to witness the “crazy” with us. 

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This is one of Calvin’s nurses, Roxanne. In tears. Like every other nurse has been when they found out about this gift. What a testimony of God’s grace this van has been.

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Calvin was already not feeling well in this picture, but his cousins and siblings took care of making it an exciting experience for him :).

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When You Moved for a Kid Who Can’t

God often brings good out of something I think is a total loss.

A month ago, when our van was broken down on the side of the road, we had a minor disaster on our hands. I was in the car with all five kids on the way back from camping, temperatures were soaring and my van was spewing smoke and refusing to move another inch. Calvin’s temperature started climbing, Violet wanted more crackers (because, of course that’s the most important thing even if the world is falling apart), and the kids took turns freaking out about being a few feet away from cars zooming by on the highway.

Calvin's set-up camping. It brings a new dimension to packing!

Calvin’s set-up camping–everything but the kitchen sink!

We all arrived home safely due to the help of Darryl swinging back and coming to our rescue and my sister Kristin loading kids in her van. A van broken down is not a major disaster, but it was one more major expense to the long list of realities that have a way of sapping the spring from your step. We debated at night what to do, pour more money into our van that was already high on miles and soon wouldn’t work for Calvin? It seemed like the only option we had.

The next morning my sisters called me up to say they were starting a van fund for Calvin. They reasoned Calvin was maxing his car seat and becoming more difficult to transport anywhere from our home, so why not start a fund now? The idea was ignited by visions of our smoking van and the fact that Calvin loves to go places.

In no time they were planning fall festival events, a cook out, and even contacting the president himself (ok, not really, but they were determined). I took the role of the sheepish doubter on the sidelines. I wasn’t sure what made me more uncomfortable, the fact of asking people to give actual dollars and cents or the amount of the dollars needed for a van. One seemed horribly awkward and assuming and the other, downright impossible. 

I thought we should pack away this crazy talk, but…Calvin. What if people wanted to show their love for him? What if people wanted to give back to him the way he has given to his community? What if we were just standing in the way?

A few days later my sister started Calvin on the Move and gave the opportunity for people to give. The next three weeks blew us away as the goal was exceeded.*

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Darryl and I have felt some embarrassment with the fund, but when I run into people who are so genuinely excited for this project, we tuck our pride away. It’s not about us. Or even about Calvin. It’s about the community coming around a boy, defenseless and unable to provide for himself, and saying:

You have value.

You are loved.

We care about you.

We want to help you.

And this, this is the beauty of God’s love. He takes the heartbreak of disease and terminal diagnosis and intermingles hands and hearts so this is no longer a story of just a boy. Or a boy and his family. It’s that and more.

It’s a story of God providing abundantly for a little boy who couldn’t even ask.

It’s the story of God encouraging and equipping a family often tired and defeated by the endless needs and lack of progress.

It’s the story of a community witnessing to the goodness of God and reflecting that to each other. It’s the story of people being moved, impacted and changed from someone you’d least expect.

We don’t know how to say thank you for such a gift. We want to tuck away a little embarrassed (admittedly difficult in a mini-bus), but I think instead we’ll drive that van remembering the tangible love of the Lord and His care for the most vulnerable. We’ll remember on days we might feel entirely alone, you surround us. We will remember that even though loss is real and heartbreaking, God brings forth beauty out of the most painful parts of our lives.

And for all this, we give thanks.

Noah isn't excited at all ;)

Test drive: Noah isn’t excited at all 😉

(*all money raised over the goal will be used to make our home accessible)

The Lord Provides

The Lord Provides

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”

Our Summer Book Picks

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.

The True Confessions of Charlotte Doyle

Summer ReadingAt 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!

The Mysterious Benedict Society

summer reading for kids

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!

The Penderwicks

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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!

 Enjoy!

Mother’s Day – It’s Complicated

she wept

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.

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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.

 

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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. 

grief special needs parent

Couch Sessions

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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.

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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.

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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. 

Flickering

sonoran deser

dusk in the sonoran desert // karadedert

No matter how much time

we get

it’s

never

enough

 

Like a shooting star

your life

it shines

boldly

brightly

I burst

 

The darkness

after the

light

it’s what I fear

and the

flickering–

it’s here

 

You will see

glory

us – pain

for

now

 

But today I stare

it’s

love blazing

I

can’t look

away

 

Stay away

night

 

Today we

must

dive

delight

before you

come

 

 

His Delight

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.

I do.

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.

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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.

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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

Please stop telling me to take care of myself (+10 Ways to Help a SN Parent).

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.

man-carrying-many-boxes

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.

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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.

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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!



Don't know how to access respite-Get my free guide!

 

Pushing Back the Darkness

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. 

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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.

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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.

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