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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.

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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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Peace in Brokenness

[This piece originally published here).

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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.

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legs

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.

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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.

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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)

Tiger Moms and Docile Dads

(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.

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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.

Steward your…poverty?

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Sounds weird, right? We usually associate stewardship with what we have, not the lack of it. What if we have poverty? Whatever situation we are in, there is a way to respond to it and use (steward) it.

It’s hard to talk about poverty when the talk is always about moving up, not down. It’s not trendy to be strapped. But for a growing number of families, it’s an increasing reality.

A lot of people may consider their money situation to be “tight”, but it’s obvious poverty and wealth are on a huge continuum. What some consider a “barely livable income” others would consider a good living. Many people in the world are living in extreme poverty, happy to just have food for the day. But this does not lessen the reality of those struggling even in developed countries.

For the sake of this discussion, I’m referring to American poverty; when one is below the poverty line and struggles to put food on the table, literally. Poverty is not sacrificing a week vacation because your budget just doesn’t cut it that month.

I’ve met a growing number of families that fit this description. We’ve learned it ourselves–we’ve had the craziest, most perplexing five years and are struggling more in our thirties than we did in our twenties.

It happens to be at a time when most of our friends have achieved stability at the least and great wealth at the most. It happens to be when stability is craved by us because our lives have been dumped upside down by circumstances outside of our control.

Poverty can be wearisome and stressful. Not to mention frustrating. It’s also a minefield of temptations.

For those of you in this minefield, I wonder if you would identify with the same traps I’ve found:

Shame. Especially in modern day prosperous Christian churches. There are many successful people in the church doing wonderful things and you are not one of them. You’re not able to give as much. You’re necessarily consumed with working another late night in the week, missing fellowship and worship. Because there are bills still hanging in the “to be paid” pile. Maybe it’s implied from those not financially struggling that you are either lazy or foolish, and that is why you suffer. There are cases that’s true but many times not–although sometimes you might believe it yourself. You feel a sense of shame or confusion–after all God owns all the wealth in the world and yet, it’s not being given to you. Somehow you are less trustworthy or able to manage such a gift.

Envy. You watch people accumulating wealth, adding to their 401k, planning vacations, or moving to bigger and better houses. You have not been given much in material possessions. You find yourself arguing that you have a greater need for x, y, z than they do. You find it hard to watch others go on vacations and feel like a let-down of a parent when you tell your kids they can’t do what other kids can do.

Ease. Studies show that money does bring a better quality of life and  happiness up to a point. It’s hard to recognize this when you have enough, the ease is just part of everyday living and comfort. You only realize the ease (and comfort) it brings to life when you don’t have it. And seeing other people’s lack of stress about meeting the monthly bills can stir our appetites for ease. “Why does life have to be difficult?” (Interestingly, Jesus never talk about pursuing ease. He does talk a whole lot about cross-bearing though.)

Resentment. Why does God…? Why do they…? It pops up when you tour your friend’s new house or your car sits at the repair shop…again. This attitude is the age old trap Satan uses. We end up victimizing ourselves which leads to bitterness. It destroys us from within and it destroys relationships. Fight resentment by giving thanks to God for your friends blessings. Confess your resentment to God. Jesus gave his life for the resentful, ask Him to give you a servant heart.

How can you navigate through this minefield? Is it even possible? Yes! Christ has given us the power of His Spirit to overcome them, no longer should sin have dominion over us (Romans 6!).

Submit. If your poverty is not due to laziness or foolishness, realize this is not God’s punishment. This uncomfortable (often painful) place is where He has you for good reason. And while you should continue to work to secure your finances, give this situation to God. Submit it to Him and ask him to dwell with you in it. Ask Him to work His glory and wisdom in you and your situation. You don’t have to like your situation to surrender it to the Lord.

Live by the riches of Christ. Paul says the riches of Christ are “unfathomable.” We can easily fathom an extra thousand dollars or a nicely stocked 401k. But nobody can fathom the richness of Christ–which is yours if you are united to Him! You are rich, my friend. If that doesn’t feel like any consolation then we need to get back in the word and ask Him to show us what it means to “delight in Him.” Write out John 1:12; John 11:25, 26; Romans 8:29, 30 and any other verses where you discover the riches that are yours in Christ.

Find joy in each day. When your feet hit the floor in the morning, give thanks! You’ve been given a new day, a day in which Christ wants to reveal more of Himself to you. A day He wants to delight you in His riches (and no, usually those are not monetary!). Don’t let fear of the future squelch your joy of God’s provision for this day. Your kids will model this; if we live joyfully they will too! Conversely, if we openly display bitterness about our lives, they will too.

Serve others. Focus on your standing in Christ. This is your identity and this is how we should relate to one another, not an identity based on who has what. For those in the household of faith, we are brothers and sisters in Christ. Seek to serve; you may not have money but I have no doubt God has given you great gifts. Maybe you haven’t even discovered them, get serving and you will find them. Gratitude and joy will be a surprising fruit of serving. Serving others also kills envy. Get your kids together and do a service project. They’ll forget their pity-party about not going on that great trip and will create lasting impressions of what it means to serve.

Give thanks. It is the divine antidote to a complaining spirit–powerful and quick to give us a real perspective. This doesn’t mean you ignore or deny the reality of the difficult situation, but rather focus on the beauty and goodness that is also present. Take a walk and admire the beauty, breathe deeply and thank God for your body, your mind, your soul. Cherish the family and friends that surround you. Give thanks for the church of God. Start a gratitude journal and suddenly you’ll see blessings everywhere!

Eternity. Don’t despair even if you never have a dime in this life. Yes, it’s hard but in the end we “count all things loss” except for the riches of Christ Jesus. Seek first the kingdom of God–that’s what’s lasting and it’s already started here. As you lay out all the bills on the table remember your greatest debt has been paid, at the expense of Jesus’ blood, and it’s final. No matter how financially “ruined” you may be, if you are in Christ you will never be spiritually ruined.

Know that you are not alone–not only are others in your shoes but even better, God has not forsaken you. Don’t believe that He is ambivalent to your needs, He knows and cares. Trust His wisdom to give you exactly what you need in order to make you more like Christ Jesus. Even if that means eating lots of rice and beans for now.

 

God Doesn’t Need My Kid To Beat the Odds

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It was so definitive, those conclusive words of the neurologist: “He will never walk or talk. In many ways he is incompatible with life.” Calvin was less than one and I was more than hopeful.

I would sit up late at night reading stories of kids pushing far past their prognosis, astounding doctors with abilities they never thought possible. I looked down every avenue that offered hope. Inspirational video clips fed me the possibility of miraculous outcomes no matter how dismal the beginning.

The stories were true. But it hasn’t been my kid’s story. In most ways, his reality matches the prognosis; he isn’t beating the odds.

I prayed for a miracle and fully believed God could do it. Some evenings I’d watch the stairs and half expect Calvin to peek his head around the corner. Or as he woke slowly in the morning I’d wait for his little hands to reach up and scratch his head or reach out and hug me. They never have.

It’s painful to realize that not every situation is one that God gives a miraculous deliverance to show his presence and power. We tend to remember the amazing displays of God’s power in history: Elijah’s showdown on Mt. Carmel (1 Kings 18), Naaman’s leprosy healed (2 Kings 5), or Jonah’s radical rescue (Jonah 2).

We like to remember the stories where men beat the odds. We like trophy stories, ones that showcase deliverance and give testimony of God’s power. We’d be lying to say we didn’t want to see this in our kid’s lives too.

But the testimonies of those who did not experience miraculous healing and power are just as important. Perhaps they show the alacrity of faith and God’s sustaining power even more; His “power is made perfect in weakness” (2 Cor. 12:9). We imagine the rush of triumph from the deliverance of circumstances but God often makes faith triumph through the fire of trial.

Think of Job, Paul’s thorn, the apostle John’s banishment, or Stephen’s stoning. God worked treasure through struggle and soul-refining rather than through remarkable deliverance.

You may not experience the joy of watching your child beat the odds. But take heart–the power of Christ is just as present. Not only will he sustain you, he has already accomplished complete deliverance and gained an eternal triumph.

Jesus Christ, the very son of God, subjected himself to death on the cross. He allowed the nails to pierce his hands and endured spiritual and physical agony so we could be free from the bondage of sin and death.

This is the ultimate story of deliverance. This is the story that he weaves into our brokenness. This is the story that whispers hope into our homes with kids who are not “beating the odds” and being featured on inspirational news clips.

It is morning and Calvin is coughing–his lungs are full after a night of sleep. Deliverance hasn’t come from our circumstances. But God doesn’t need Calvin to beat the odds in order to prove his goodness, faithfulness, power and salvation. Our weakness is precisely what he is using to show his power and presence.

–originally posted at specialneedsparenting.net

 

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A “Hard-Knock” Life

What happens when the dreams are lean? The kids don’t care–they ran like crazy on the front lawn, laughing and piling on the lawn scattered with white puffs. The cotton is crazy this spring, filling the air with white, sticking to our shoes, lighting the lawn. They miss the worry and rejoice in the present, the one year old right there in the middle of it with one pig-tail and two chubby legs. Delirious happiness.

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I waved from the window, then turned from commotion to the stillness–Calvin laid on the couch as my hands began cleaning toys and books, posting reading logs, drawing meds, and cleaning up dinner.

I used to dream about the fatness, the fullness, that life held. The funny thing is, it always was about my comforts–getting ahead and all that. God’s had other plans, better plans. He’s given lean times.

“Some people just get kicked through life,” my sister said ruefully. We were sitting on my front stairs and I could no longer tell if my tears were from crying or laughing. (Sisters are certainly one of the best forms of therapy anybody could ask for, right?)

There are people who always seem to land on their feet and then there’s those that feel like they are dropped on the backside by circumstances and left to skid along.

Have you been there? Maybe your life feels like it’s playing to the soundtrack of “It’s a Hard-Knock Life”. How do we respond as believers?

I’ve come to realize God cares less about my comfort than He does about my sanctification. And no surprise, it’s often painful and not comfortable in the least. But in the lean times, He gives Himself. There is no better place to realize He is enough than when we are empty-handed. He withholds things that seem necessary with one hand, but the other hand draws us near to Him and pours out peace, joy, contentment, and fellowship with Him.

When we have nothing to cling to here on earth we are all the more free to cling to Him. Even in the “mundane” crosses–financial hardship, job loss, chronic health issues, or relationship struggles, He calls us to “learn of Him” (Matt 11:29).

How can we “learn of Him” in lean times–times that stretch us emotionally, financially, spiritually, mentally?

Consider Christ. Look beyond the difficult circumstances and see Christ. If you have little and struggle to pay bills, think of Christ who left the riches of fellowship and comforts of heaven so we could gain eternal, abounding treasure in Him. If we have Christ, we have all. Our struggle is used to ready us for His fullness.

Is your reputation of little value? Think of Christ who left the throngs of angels worshiping in heaven to fellowship with the poor, despised and those of “little value”. You are everything to Him and so He should be to you.

Are you facing chronic health problems? Do not lose heart, your body may waste away but He is renewing you, molding you, preparing you perfectly each and every day. (2 Cor. 2:16) Christ desires you to be with Him and is carefully getting you ready, with painstaking love, even when His hand feels heavy or cold.

Trust. When trouble comes in waves we’re tempted to anger or defeat. It can sound like: “Isn’t this enough?”, “Is God against me?” or, “I don’t even see the use of praying anymore.” These are insidious forms of doubt and unbelief; I’ve seen them crop up far too many times in my heart. We need soul therapy (prayer, reading the Word, communion) so that our posture to that new wave of trouble is one of trust. Trusting the love of God expressed in Christ to me, surrendering my hopes and comforts for a deep reliance on Him.

Obey. When defeatism is at the door the Holy Spirit can blow fresh winds of holy resilience into our souls.  I’ve found this always happens as we take steps forward of obedience. This means refuting the lies of unbelief, confessing our sin, renewing our trust in Christ and committing ourselves to prayer and the study of His word. If you don’t even know how to start walking in obedience, take out a hymn or psalm. When we lift our voices in worship to God the Spirit quickens our heart and sheds light on our path.

Do not be deterred by adversity, there is gold waiting to be discovered beyond the pain as we “learn of Him.”

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