Endurance

The Road to Calvary

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The road to Calvary is paved with saints. And once every year or two I have the great privilege of traveling on it, with them, at a junction that is somehow, in God’s upside down Kingdom, as beautiful as it is difficult. And when I tell you where it is, you will have a hard time understanding how it could possibly be beautiful. And then I’ll do my best (and fail miserably) to explain via the English language something that defies my natural, earthly, understanding. But first, I think John Piper does a beautiful job explaining the merits of the Calvary road:

What a tragic waste when people turn away from the Calvary road of love and suffering. All the riches of the glory of God in Christ are on that road. All the sweetest fellowship with Jesus is there. All the treasures of assurance. All the ecstasies of joy. All the clearer sightings of eternity. All the noblest camaraderie. All the humblest affections. All the most tender acts of forgiving kindness. All the deepest discoveries of God’s Word. All the most earnest prayers. They are all on the Calvary road where Jesus walks with his people. Take up your cross and follow Jesus. On this road, and this road alone, life is Christ and death is gain. Life on every other road is wasted.

Matthew 16:24
24 Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me.

Philippians 1:21
21 For to me to live is Christ, and to die is gain.

We travel on the road to Calvary via Leukodystrophy. A miss arranging of variants on strands of DNA we’ll never see, but daily feel the effects of. The approval of that miss arranging is the stuff of other posts and something I tackle one day and one fear at a time. But here, I’m seeing with eyes of reluctant acceptance through supernatural mercy and grace to the beauty of this broken road to Christ.

We step into the valley just a little afraid. It’s an actual valley in some of God’s most beautiful creation, but it’s the people in this valley (both physical and spiritual), that give me pause every year. We know we’ll see and hear and draw alongside suffering children and grieving parents whose cries echo off the walls of the valley of the shadow of death. We know we need not fear evil there. We know we need not fear death. Yet, the road through the valley is a difficult one and it is somehow more difficult not to fear the difficulty.

There are saints in the deepest depths of despair. There are always the newly diagnosed and my heart aches for them as I hear distant echoes of my own cries of, “Lord, I don’t want to. I can’t.” and, “Why?” and my own selfish heart wants to turn away so that I don’t have to re-remember those feelings but, my Lord says to weep with those who weep. There are always those anticipating grief while simultaneously trying to treasure every fading ability and earthly moment. And then those treading water in the depths of John Bunyan’s river, that last enemy of all Pilgrims, death, unable to follow their children across. And the pain in their eyes will take your breath away and make your eyes so puffy you struggle to see the good things.

But God.

Right in the middle of this valley, at a ski resort in upstate New York, through the gift of another family’s road to Calvary with a little boy named Hunter and the subsequent means of grace, Hunter’s Hope, we also get to see all the riches of the glory of God. And that few days is less like a breath of fresh air and more like breathing real air.

If the road to Calvary is where the sweetest fellowship with Jesus is, it is because it is where we seek Him most. Where we most fully relate to His suffering. And in this valley, there are people living daily in His presence. Out of necessity sometimes and out of gratitude at others; where else would they go? And like Moses returning from the mountain top, you can see it reflected on their faces.

The road to Calvary is where you learn to delight in the treasures of God’s assurances. This valley is full of people clinging to the promises of God’s presence, faithfulness, and provision. Not just for their sustenance here, but for eternity. Their hope is so firmly placed on the cross and the blood soaked sacrifice of Christ, that there is no room to hope in other things. The promise of eternity for the children of God, and their confidence in that promise, has blurred the line between the here and now and the forever and they spend their earthly lives living and loving in light of it. And they speak of it as confidently as the rest of the world speaks of tomorrow. This is the clearer sightings of eternity that Piper refers to. Their gazes are fixed on it.

“And that few days is less like a breath of fresh air and more like breathing real air.”

The camaraderie though is probably the most beautiful and life giving thing in this valley though. And I don’t say that just because I can relate to them. In this gathering of saints on the road to Calvary, gone is the frivolous and foolish. There isn’t a mention of the things of Vanity Fair. Conversations are devoid of small talk and full of big talk. The deepest talk. Words are all filtered through the Truth, and all meant to lift up, encourage, support, and point to the originator of every means of grace. And this results in the humblest of affections and the most tender acts of love and forgiveness.

This year, we saw so much of this culminate in the siblings of affected children. The way they loved and cared for each other’s siblings. The way they served each other, included each other and supported each other was nothing short of Christ likeness. Gone were the trappings of American teenagers. (I mean, as gone as they can be in a bunch of sinners, living in America.) Instead, they pushed wheel chairs, operated machines, assisted littles, spoke to those who couldn’t respond, celebrated each other’s talents and efforts (no matter how small or big they were), included the invisible, and prayed. They lead with humility and true affection and it was a beautiful reflection of what they see their brave parents and siblings do every day, as they too, endeavor to reflect Jesus on the Calvary road.

I can honestly say I’ve learned more of the character of God from these children than from any learned, able bodied adult I’ve ever met. Again, an upside down Kingdom, in our eyes. But it’s true. Some have never uttered a word in their lives, yet speak the Word of God more eloquently and boldly and loudly than anyone I’ve heard with my ears. Because their very lives speak of God’s limitless ability to redeem. To take what seems wholly bad, and use it for His glory and somehow for our good. Their lives reveal His unmatched power. Through them, He moves the mountains of politicians, laws, and hearts of the unsaved without them lifting a finger. And through the self denying care of them, He shows the world what love truly is. And for those with eyes to see, it drives them to dive deeper into His Word to understand something so contrary to the wisdom and foolishness of the world.

Then there are the prayers!! Gone are the prayers for good test scores, a great free throw, a higher paying job, a better boss, or kids that will listen and reveal our superior parenting. Not that our Father doesn’t know we want those things, even when we don’t ask. 😉 But the prayers of saints on the Calvary road are saturated with earnest pleading for more of Jesus. More of His presence. More of His peace. The grace to reflect Him to a watching world. There is a groaning and aching for Him that is other worldly, yet a confidence that they will have Him!

Even in the midst of a valley in which they can’t always see Him.

I think this quote of Spurgeon sums it up nicely.

Now, don’t hear me say that all of these saints do this Calvary road perfectly. None of us do. Like any other place, we say the wrong things. We get angry with God. We get real and with that, real sinful. We fail at hurdles and shy away from the hard things. But there is a uniting focus that drowns out the everyday of the small and unimportant and molds and shapes every thought to the big and eternal.

Calvary.

Hidden Treasure

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When I was little, my dad bought a full dining room suite of furniture brand new. Solid oak, I can still remember the smell when it was first delivered to our apartment in Massachusetts. Consisting of a table, chairs, and hutch, I now wonder as an adult how exactly they managed to get it up the stairs! I think we had the table a full week before my little sister stabbed her fork into it in a fit of Italian temper and a cover for the top was ordered that would remain in place the rest of my childhood. But the hutch! That’s where the treasures are, right?

Having fallen out of fashion somewhat, perhaps this will not be as relatable to a younger generation so I’ll elaborate. The hutch, or the china cabinet if you’d like, is where all the THINGS were stored. Newly married, Hubby and I bought our first (and turns out only, because who wants to spend money on furniture?!) dining room set. We have since parted ways with our bulky hutch, but I remember loving to have somewhere to display the beautiful, impractical, matching china and somewhere to hide all of the less aesthetically pleasing, practical, pieces.

Yes, I’m going somewhere beyond memory lane here, hold tight. I also remember having a discussion once about the top shelf things in life; the things we strive for and display for all the world to see. And that conversation came flooding back to me this Sunday as I wrestled with some things. Hubby has a new job, with new days and new hours that are making family time a challenge. So in order to carve out more time, we met him at the Mall of America after work on Saturday. It’s been many years since we’ve dined and shopped at that mall and I truly wasn’t prepared for it to be an emotional experience. It’s a mall.

But as we walked out of the parking ramp and into the walkway, the changes in our life started to manifest in tangible ways. Starting with Baby Girl’s service dog. Who I realized had yet to experience an escalator. This was a fun experiment which started with carrying a thirty pound dog up the escalator and ended with waiting for a lull in foot traffic to give her a chance to examine the frightening contraption in her own time before putting her paws at risk a second time. I think we made it almost to the restaurant before I realized that Baby Girl was struggling. I knew this would be a challenge for her. Most don’t know that she had been unable to leave the house without a panic attack for almost the last two years. The dog has been a gift, and one I didn’t know we needed, until it was the thing that would set her free of home. But this was a lot of lights, a lot of sound, a lot of…. people. And it became evident pretty fast that we had pushed the envelope a little too far. We got through dinner, with the help of some medication, and did what we’ve come to do. Persevere. Make the most. Adapt. Find the good. And when we exited the restaurant, we were inundated with “good”. Have you ever taken a moment to appreciate the sheer vastness of THINGS in a mall? It doesn’t have to be the Mall of America to realize this is where all the top shelf things are. And this is where we used to get our things! I remember bringing the kids when they were little and finding the shoes with the swoosh to adorn our pride and the store with every imaginable accessory to cover and distract from any perceived imperfection, the favorite store with the actual sizes of their tiny clothes in the name to feed my vanity and the kiosks with the latest and greatest of “needed” electronics that would promise to fulfill and distract us for seconds…. all the beautiful, shiny, new, “quality”, top shelf things. And I’d like to say that I no longer found them beautiful. I’d like to say that the desire to obtain them and display them was completely gone. Burned like dross in the fire of affliction and refined to holiness that is no longer attracted to, or deceived by, excess. But alas, my flesh still wanted to reach for a few of the top shelf things.

Baby Girl, now medicated and at least able to walk with us, had no desire to enter a store. With her sensory problems, she had no desire for fun clothes or shoes. The mother/daughter shopping I had once so looked forward to will never happen. And it hurt. Oldest Son, not walking with the Lord, but at least walking with his father, was there too. And Mini Hubby brought up the rear. Literally. Often overlooked in the rest of the drama, my stellar parenting was revealed when he tried on shoes to discover the ones he’d been wearing were two and a half sizes too small. And that hurt too.

The mall closed and we left and I was happy to leave. I’d had enough of out of reach top shelf things.

Sunday was another story. Or perhaps, another shelf.

Because, praise God, our lives do not consist of top shelf things. Or at least they shouldn’t. And that was the reminder it turns out I needed.

Because the bottom shelf things are the useful things. The things hidden behind the cabinet doors are the ones we use and need the most. In our actual hutches, they’re the colanders and small appliances and hand me down kitchen tools or the big puke bowls. The things we don’t display but would miss far more than the matching gravy boat, creamer and butter dish brought out for holidays. The things that make and shape and daily form the ordinary and necessary parts of our lives. The essentials.

Sunday morning found me rummaging in that cabinet. And Pastor Mike shone a light in a back corner. Leukodystrophy is always the elephant in that cabinet of ours. The biggest, bulkiest, ugliest tool. The one we never seem able to put away for long because it’s used the most to do all that refining and shaping and molding us into Christ likeness. But back behind it in the cabinet was fear. It’s not there because it’s used less, but back there because I want it the least. It’s a pain to use. Literally. It’s ugly and heavy and I’d honestly prefer to toss it. In fact, my second greatest desire in heaven (after finally coming face to face with Jesus) is being parted with fear.

But Sunday I sat with Baby Girl’s hand in mine while her little body shook and big, fat, tears ran down both of our faces and Pastor shed light on the fear and we both picked it up and let it do its work. Because, according to him, it’s a useful thing. “Fear is an invitation…to demonstrate who I am and where I am with God. And where my trust really lies.”

And when I pulled that fear out I took a closer look. I’m afraid I’m not enough. Because I know I’m not enough. I can’t make Baby Girl comfortable. I can’t make her independent. I can’t make her life what I wanted it to be. I can’t save Oldest Son. I can’t undo damage done. I can’t even keep track of shoe sizes for the easy one. I fear falling short. I know all of us fall short of the glory of God, but I fear falling short of the finish line. Not running the race well. Not ever hearing those blessed words, “Well done, good and faithful servant”.

So where does the fear demonstrate I am? In utter and total dependence on my God. The kind of dependence that keeps me on my knees, far out of reach of the top shelf things. The kind of dependence that means I need Him not just for my daily bread, my sustenance, but for every breath I breathe. The kind of dependence that means I’m painfully and blessedly aware that I can’t finish well without Him. The kind of dependence that absolutely requires that I think about and praise Him, moment by moment, for the ways He has blessed us in and through the bottom shelf things.

And so I discovered, the hidden treasure, buried in the back on the bottom shelf, is a very useful tool…. this ugly fear.

Then, Baby Girl and I held hands and cried and prayed some more and I looked up…to find a different kind of hidden treasure. And with that, a sweet reminder to put the fear away once it’s done its work, thank God for His countless blessings and sustaining grace…and laugh.

Honestly, hidden treasure is often the last place one would expect…

No End in Sight

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I stepped outside the other day to let the puppy out and smelled it. As Nessie raced around the yard, nose to the ground, finding the perfect place to pee, I lifted mine and made out the musty smell of flowers in last bloom, decaying plants that have offered up their final harvest, the unique blend of weeds that make their appearance during the second week of August and the hot, final push of summer.

And it made me nauseous.

Instantly, I became aware of the cicadas and their call for fall. And it made my heart race and my palms sweat. The sun hung low and heavy in the sky and I realized…it’s the end. The end of long days, flip flops, warm sweaty kids, dirt between toes, skipped lunches, water clogged ears, sun burns and no schedules. But for me, it’s not just the end of summer.

For as long as I can remember, fall has meant the end. As a little, the end of summer meant the end of a visit with my mom. For another year. At its worst, when I was youngest, it was a traumatic forced removal. At its best, when I was older, an unhealthy reinforcement that fall was to be avoided at all costs.

I made some headway while the kids were little. Some new memories of fall. What’s not to love about a toddler picking a pumpkin or going on a hayride? A kindergartener finding their hero’s costume to wear or learning how to make applesauce and apple pie?

Now, the second week of August has become Baby Girl’s first diagnosis day. Which I was convinced would be the end of me. Or at the very least, the end of my sanity. It was neither. However, it did become the end of life as we knew it. And eight years later the very smell in the air has the power to transport my body to that same day, answering the phone. The nausea, the racing heart, the sweaty palms. Sometimes even the blacking of the corners of my eyes and the roaring in my ears. Not to mention the inability to sleep.

But here’s the thing. I know it’s not the end. Not really. It may have been the end of what we knew, but it was the beginning of something better. Something bigger and richer. Though my body might not have gotten the memo, my heart knows there is great joy. Fall means the beginning of a life I didn’t know existed. Where every day is cherished, both good and bad. Where our very definitions of priority and blessing, faithfulness and love, were turned on their heads. Where there is deep, deep gratitude and preciously simple joy. Where we have found a lifelong dependence on the Lord and the joy of watching Him faithfully provide.

It also now means the beginning of a homeschool year. The beginning of learning both about the world around us, and the God surrounding us and within us…together.

And this year, it marked the beginning of new life for Mini Hubby. An incredible gift of which the timing is not lost on me.

In short, this is a season I haven’t and won’t likely ever choose. I may never run racing for the first pumpkin latte or stock up on the spice candles. I may never decorate for fall and long for hoodies. But, it’s a season my heart is beginning to love as God continues to use it to bind me up and restore that joy within me. And I suspect I’ll have to continue to fight for that as my body catches up with our current circumstances. And, as I was reminded this week, there is still an enemy that would steal my love and gratitude. There is a thief that still, on occasion, sneaks in during the night and tries to rob my peace and silence the profession of my joy to the glory of God.

I’ll keep fighting because though this season continues to be a roller coaster of ends and beginnings for me, I know there is really never an end. Not really. Not for those in Christ. He is all new life and new beginnings for those who put their faith in Him.

There is no end in sight.

Do you trust Me?

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Outside my room family life goes on as evidenced by the scuffling of two dogs, the clanging of dishes in the sink and the musical notes signifying the end of a wash cycle. But inside, the fan whirs and a sliver of light slashes across the comforter through closed shades where we lay trying to find the calm and quiet. Her head in my lap, my hands in her hair.

I whisper soft words as her whole body trembles and her breath comes fast and choppy. Almost as fast as the tears sliding down her face. I hold her in my arms as I’ve done since they handed all 6lbs 4ozs of her to me. And like too many times in her sweet little life, I can’t make it stop. So I just keep holding her body while it lies to her, stuck in fight or flight mode, and whispering truth to her heart while her mind tries to convince her that her body is right.

“Take deep breaths. There you go.”

And I do it with her because I need them too.

I rub her back and feel her breath hitch as she fights for control.

And I bite my tongue to keep from crying myself.

“You’re okay. You’re safe. Everything is okay.”

“But it’s not.” She says. “It doesn’t feel like it. I don’t understand things. People get mad at me. I make too many mistakes. I need too much. No one stays.”

“You are doing just fine. You are loved exactly as you are. You don’t need too much. I stay. Jesus stays.”

But I’m also entering fight or flight mode because I don’t understand this. Oh, the panic I’ve experienced, but the panic that is a result of mixed up genes and mangled myelin and messy hormones? This I don’t understand and I don’t know what more to do to fix it. We’ve tried all the oils, done all the therapies, taken the walks, ordered the weighted blankets, breathed really deep, talked all the talks, tried the meds, and PRAYED. SO much.

And now I’m the one that is convinced I’m not okay. That I keep making all the mistakes. That I need too much in order to help this girl. So I pray some more. For more help. More wisdom. More ideas. And I ask Him to stay. Because I feel far from okay.

Then, there’s another wave of fear and tears and I pull her closer and whisper, “Do you trust me?” and there is a muffled nod with more than a little snot rubbed into my shirt.

“Do you trust me when I tell you that you’re okay? Do you trust me enough to tell your feelings that they’re wrong, that everything is going to be okay?”

And for just a second I can see it…….

My Father bending over me, bending over her, saying, “Do you trust Me when I tell you that you’re okay? Do you trust Me enough to tell your feelings that they’re wrong, that everything is going to be okay?” And I breathe deeply in unison with Baby Girl and we hold each other as our bodies relax and our heartbeats slow and I praise the One that stays.

I can’t understand it. I can’t fix it. I’m not enough. But I know the One who does understand. I know the One who can fix it. And I know the One who is enough. For both of us.

So we’ll keep trying to figure it out. We’ll keep trying the things. We’ll keep making the mistakes. We’ll keep praying. And we’ll keep trusting the One who holds us. Even when our feelings and bodies tell us differently.

Rock of Ages

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Maybe it’s because we’ve just experienced the longest stretch of sub zero temperatures in almost a century, or maybe it’s because of all of the Facebook posts of people’s warm climate escapes, but I dreamed of an ocean last night.

Knee deep in calm, blue waters the ebb and flow gave little relief from the glaring sun. At that depth, the water was more like bath water. It was a new to me beach though and I’d spent a considerable amount of time trying to decide if there were any dangers below the surface. Behind me, there were a group of children using drift wood to examine a washed up jelly fish and I was keeping an eye out for any of it’s more fortunate mates. I had no idea where along this coast we were. Could it be shark season here? There were many people, far less cautious than I, that had entered these waters at the same time as I had and were now enjoying their relief from the heat, dipping below the surface and swimming in cooler water further out.

But there I stood, searching for unknown dangers, studying the water and what lay below the surface and looking longingly at the playful couples splashing in the distance. Distracted by all of the noise behind me, I glanced back to see a boardwalk full of people and a beach packed with blankets, umbrellas and countless families. There was volleyball playing, sand castle making, sun bathing and shell hunting. Shops crammed full of souvenirs destined for the landfill were teeming with customers in tiny bikinis and giant jewelry. The smell of fried food from several food booths mixed with the salt in the air and my own sun screen. Every time I looked longingly back out across the ocean, uncomfortable in the heat, my attention was drawn back to the commotion on the shore. So I stood in the in between. Not quite in, and not quite out.

That’s when I heard it. You’ve probably heard it before too. The “Oceans” song. If I closed my eyes I could hear it more clearly…

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep my faith will stand”

And there I stood, worried that venturing further, my feet would fail. Certain that my faith would. But drawn none the less. So I stood still and sang along.


“I will call upon Your Name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine”

That’s when it happened. Looking down, I watched as the water pulled back as if Someone had pulled out a giant plug somewhere out in the great unknown. Suddenly, all people and their accompanying sound disappeared with the water and I was left with a foreboding empty silence. The sand beneath my feet had been drawn along with the water and I watched the ground hollow beneath me. My heart raced as my gaze lengthened to the sea bed in front of me. A myriad of things revealed in the stripping of the sea. Some beautiful, some ugly. I stood exposed, alone, in the quiet open. Waiting. And then I heard it. A roar of rushing water. Louder than anything I’d ever heard. I looked up in time to be enveloped by the wall of returning sea. The wave that slammed me into the Rock of Ages.


“Your grace abounds in deepest waters
Your sovereign hand will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now”

And there was incredible fear. Floundering, there was no place for my feet. No up or down, no left or right. No air in my lungs. No solid ground. No foothold.


“Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior”

I vaguely remembered hearing and singing along to the song. If only I’d known what it might look like when I’d asked to be taken deeper! Would I have sung along? Would I have asked for faith without borders?


“I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine”

Then there was a letting go. Not a giving up, but a giving in. I once again closed my eyes and heard You call. But this time, I called back.

Wherever You call me, Lord.

Then I woke up. To the quiet peace around me and in me. Grateful to keep my eyes above the waves, I was reminded of my favorite Charles Spurgeon quote:

“I have learned to kiss the wave that throws me against the Rock of Ages.”

I don’t know that I’ve learned to “kiss” the wave of special needs children. I still pray earnestly for healing. But I’ve certainly learned to be grateful for it, and what it has accomplished. I am far less distracted by the people and the commotion on the shore. Lord knows it has never been more ridiculous and frivolous than it is now. The things of the world still appeal, but don’t pull like they used to. I’ve seen them fade in comparison to the eternal. I am no longer terrified of the unknown. I’ve seen what lies beneath the surface and experienced the grace hidden there. I am no longer standing in the in between and there are others that are “all in” beside me. Now we collectively beckon to those stuck in the in between. We help each other on the long days when the persevering is hard and celebrate all the victories in between. On the hard days I’m content to wade in the deep waters surrounded by these brothers and sisters and on good days… I’m walking upon the water with my Savior and there is no earthly joy that can compare.

Who needs a warm weather destination anyway? This morning, I just spent a little longer snuggled into blankets and basking in the warmth of God’s promises. I will, however, still need a coat today.

Good Gifts

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There is something special about being seven that makes my kids believe in magical things. Each one at that age has sprung a last minute Santa list on us that has included the impossible. Mixed in with Oldest son’s requests for a myriad of Pokemon and pasta was a request for his baby sister not to cry. Baby Girl, in the throws of her only girl-like obsession, handed over a one item list on Christmas Eve for Pixie Dust. This year, Mini Hubby asked for a turtle, knowing full well that mom does not allow any critters in the house that don’t have fur. There must be something about being seven that makes one willing to ask for the impossible.

The funny thing is, even though none of my seven year olds got what they wanted, they all loved everything they ended up getting. Watching Mini Hubby open his Lego gifts and spend an entire day putting together several Super Mario courses with a joy only surpassed by his focus made me think about the many things I’ve asked for, and not received. And how good it has been.

I don’t know about you, but somewhere along the way my Heavenly Father not only took my entire list of requests but also much of what I’d thanked Him for, and gave me something drastically different. I handled it with far less resilience than my seven year old children. I had this beautiful picture in my head and heart in which we were a successful, healthy, family of six. You know, comfortable home, sizeable savings account, honor roll students, good life insurance, new cars, weekend sports tournaments, warm destination vacations, promotions, the occasional cold and basically, nothing we couldn’t handle. On our own.

There was the problem, wasn’t it? My Father only gives good gifts. And a good gift does not include one that leaves me unaware of my daily, moment by moment need for Him. So, He mercifully gave me what I needed. Only, at the time, it didn’t feel like mercy. Children with a genetic disorder and the financial devastation that comes with a medical crisis felt more like crushing disappointment and pain than grace. Less like a gift and more like punishment.

A good gift includes something that makes me more into the image of my good Savior and less into the image of what the world defines as good.

So, sitting and watching my family open Christmas gifts this year I was overwhelmed with the good gifts I’ve been given. Some days, I still don’t want them, but by His grace, most days I am at least grateful for them. Grateful for the way Hubby and I are learning to plan for the future, but live in the grace for today. Grateful for the need to wake every day and surrender my family to the One who loves them more than I do. Grateful that He has not only used every one of our hard gifts to show us how loving and faithful and kind He is, but also to show us how everything else we’ve desired in this world pales in comparison to Him.

Today I’m thinking about you all. I’m thinking about how so many of you have gotten hard gifts this year. I’m praying that someday soon you will be able to stop grieving the gift you wanted, but didn’t get. I’m praying that you will be able to see, although dimly, how the gift you have is being used (If you are Christ’s) for your ultimate good and God’s glory. I’m praying for your perseverance in the hard things, but I’m also praying that you will find joy in the gift you didn’t ask for. Though 2020, for many, has been much more like walking on Legos than getting the coveted pet turtle, I’m praying 2021 will find everyone picking up all the sharp pieces and discovering what our Lord intends us to make with them with the same intense focus and joy as a seven year old that believes in the impossible.

Merry Christmas!!

James 1:17 Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.

Matthew 7:11

If you then, being evil, know how to give good gifts to your children, how much more will your Father who is in heaven give what is good to those who ask Him!

Dissection of a servant heart

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I’ve always loved to read, though the content has changed significantly over the years. One of my favorite authors is C.S. Lewis and though I return to his books often, I’ve recently found a new love of biographies and auto biographies. My favorites happen to be of some wonderful old saints like George Mueller, Amy Carmichael, and Charles Spurgeon. I read through the lives of these incredible brothers and sisters in Christ and they both encourage and convict me with their faithful perseverance and joyful service to our Lord. If you don’t know them, for the sake of this blog, you need only know that the size and scope of their ministries was only surpassed by their great faith and reliance on their God. Which resulted in great Kingdom impact.

And it never fails when I close the book for the night.

I want to serve like them. I want to minister to orphans. Great multitudes of them (or maybe more realistically, foster children).

To save exploited children and show them the love of their Father.

I want to tell of the Good News to the masses. The underprivileged, forgotten, broken, hurting, starving masses.

I want to do big things in response to the big Love I’ve received.

Don’t misunderstand. I also think that sometimes the big acts of service are the small ones too. I find great joy in loving chatting, giggling, exasperating teenage girls in my youth group, wiping snotty button noses in my Sunday school class, sorting dusty, dirty cast-offs for a rummage sale and even scrubbing toilets and windows in the house of my Lord.

But as I read these biographies I found myself wondering if these beloved saints ever wrestled with where they were called to serve? It seems to me that they didn’t. And it makes me wonder if this is my own peculiar stubbornness.

I sometimes look at our situation with special needs children as an obstacle to service. How am I to do all of the things I want to do when there is a constant stream of paperwork, medical bills and appointments.

If only I didn’t have one fire after another, Lord, the things I could do!!

Then I went to an amazing conference with Hunter’s Hope. An organization that serves families affected by Leukodysytrophy. It was while sitting in on a prayer meeting, fever raging from a kidney infection, that the Lord began to work on my heart.

The chairs were arranged in a circle with Kleenex boxes strategically placed about the small room, as couples made their way in from breakfast. In varying stages of grief, these beautifully brave parents and caregivers shared their deepest, most authentic, genuine, hurts, fears and even heart breaking anger. Then, they collectively placed their burdens in the hands of their Lord, asked for the strength and wisdom to glorify Him throughout the conference, and closed in praise and gratitude for the fellowship and provision given to make the conference possible.

Then, since I was feeling so ill, instead of making connections and asking questions I was forced to just listen and observe. (I tend to do a “doer”, so trust me when I say this was frustrating and decidedly disappointing. NOT what I’d planned.)

What I SAW was HOPE. I saw these same hurting, grieving, struggling servants shining light into what I’ve experienced to be some of the darkest of circumstances.

Because there were many in attendance who were trying to navigate the terminal illnesses and deaths of their young children… without Christ.

I saw these unbelieving families look upon these other, broken parents and wonder at their peace. At their ability to find joy. Wonder at their belief that their God was still good. And it made me wonder…

Did those parents of the prayer meeting realize how well they served their Lord? In and through the pain and daily struggle for peace. It was then I thought of those who God had used to serve me.

A pastor, who having come to Christ at the grave side of his infant daughter and a friend with a daughter with MD would be the only ones I could hear and believe when, in my own grief, I could not believe or hear God. And I suspect these precious families will one day, if they haven’t already, be given the opportunity to serve in a similar way. To be able to say, with confidence, to the similarly afflicted,”He’s still good. And He still loves you.”.

Then, I saw these same hurting parents present all of the amazing ways God has used and purposed their great suffering to ease the hurts and suffering of future Leukodysytrophy families. Dozens of organizations founded, books written, laws enacted, lobbyists created and activists activated to go out and comfort with the comfort they themselves have received.

And then I think, have I truly been willing to serve where He has placed me? In the relentless paperwork, medications, therapies, insurance battles, waiting rooms and fear filled future. EVERY morning when I surrender these children anew, have I surrendered willingly myself to serve where He obviously wants me. And am I doing it as cheerfully and joyfully as I would serving the next project at church?

And the answer is humbling.

Not always.

These last couple of weeks especially I’ve wanted to serve pretty much anywhere but where He has me.

I still want to serve in ways that are more appealing to me. Would still honestly much prefer serving widows and orphans, the homeless and persecuted. Would even cheerfully welcome the opportunity of a great inheritance to pour into God’s kingdom if you twisted my arm.

I’m far more comfortable serving from a place of my own abundance, than a place of my own great need.

Perhaps I do NOT yet have the willing, servant heart I thought I did.

Sometimes I’m wrong…

/ bobbiblanchard / 1 Comment

Have I ever told you I never planned to be a Stay-At-Home mom? It wasn’t what I thought my family would need. I thought my future family would need things like reliable vehicles, family vacations and savings accounts. It turns out my family would need a mom that could devote hours a week to paperwork, phone calls and appointments for a couple of medically complex kids so they could get a diagnosis in one year, instead of the average fifteen. They would need a mom that could stay home and research, fight for answers and fight insurance companies until she got them. Thank God, He knew I was wrong about the career and making money thing.

I was wrong again when we finally got our first diagnosis and I decided to bring Baby Girl shopping for school clothes. At Justice. We don’t normally shop at places like Justice. Because shopping at Justice falls into the same financial category as family vacations. If you don’t have a tween daughter, just take my word for it. But somewhere in my sleep deprived, grieving mind, spending a ludicrous amount of money on Baby Girl seemed like… justice.

So we walked in the door and I said the craziest thing, “What do you like, Baby Girl?”. Two hours later I had agreed to a pile of clothes that not only exceeded our clothing budget (for the year) but also some hard and fast rules I had on 8 year old modesty.

Then there were “the shoes”. Because of Baby Girl’s deteriorating coordination, footwear had been limited to Velcro laces and flat, functional shoes. She did not find flat, functional shoes at Justice. She brought me a pair of the most ridiculous, sequined, flashy, silver platform sneakers… with tie laces.

And I took one look at her hopeful little face, thought of what that doctor had said two weeks before about her being in a wheelchair within ten years… and placed the shoes on the growing “keep” pile. Three years later, we do not believe that first diagnosis is what God has for Baby Girl. And I’m absolutely sure that she didn’t need “the shoes”.

I was recently wrong again. I know, I’m as shocked as you are. I was sure once the kids were all in school, I would be able to go back to working outside the home. We would have things like savings accounts and there would be vehicles we could at least afford to fix. And bless sweet Hubby’s heart and broad shoulders, maybe he wouldn’t have to keep taking all that overtime…

Oh, I knew I wasn’t going back to a career in IT with long hours and longer commutes, but when Mini Hubby started kindergarten this year I was pretty sure a job in the school where Oldest Son was starting High School would be a perfect fit. It almost was.

These last several months my heart grew for kids in tough situations, with big obstacles and even bigger attitudes to overcome. I learned how to better support Oldest Son socially and in academics. And because I had the opportunity to see what he sees of the world on a daily basis (trust me, their world is far bigger, scarier and less restricted than ours was) I know what kind of conversations we need to be having regularly. I also had the chance to work among adults again. I won’t lie, it is far more entertaining than working with myself. I found a whole bunch of new people to love.

There was also puke.

So.

Much.

Puke.

Strep throat.

A few times.

The loss of my mother-in-law.

A surgery for tonsils and adenoids.

Some problems with some crucial labs for Oldest Son and Baby Girl, and finally….

The realization that God was sending me home, again.

Usually when I’m wrong, it feels a lot like… failure.  I’ve made the wrong choice, my plan didn’t work. It can feel like I’m giving up, letting go or making emotional decisions (“the shoes”). Because I can’t see the full picture. My vantage point is far more limited than God’s. But, in hindsight, it is a joy to see how He purposes my missteps. Redeems them all and uses them for my good and His glory.

Right now though? I still can’t see what He’s doing. And that’s hard. So I’m holding tight to a few of these Truths.

And maybe this song. 😉

Surgery and Procedures: A Guide For Caregivers

/ bobbiblanchard / 1 Comment

There are oodles of articles, brochures and pamphlets on how to prepare a child for surgery or procedures. I know, I’ve had the pleasure of reading many of them. They’re extremely helpful. What I’ve found over the last few years though, is that they’re not extremely helpful in preparing the adult that is accompanying and caring for the child. So, as we’re headed in for a procedure today, I thought I’d provide my own list of things I’ve found the most useful to know as the caregiver accompanying a small person for what can be a very stressful time.

What To Bring

The hospital should have what’s called a “Child Life Specialist”, or something similar to keep your child entertained during the endless waiting and to lessen their anxiety with activities and electronics. You’ll likely have your hands full doing the same. But, once they’re wheeled in, you will find yourself with plenty of time on your worrying hands.

First, bring your people. Family, friends that are family, church family, whatever. Bring a person that can run for food if you need it, grab some tissue if you need it, enable you to run outside for some fresh air and most importantly, distract you when the hands on the clock don’t seem to move. These people should also ideally be positive, easy going and good at waiting. This goes for a hospital stay if you have one afterwards too! If you’re looking at an extended stay, come up with a schedule ahead of time. I’d really recommend this if you have a large number of people so that both you and your child are well supported, but not overwhelmed.

Bring easy brain activities. I wouldn’t recommend any difficult novels, studying, or important work you can’t make mistakes on. I’ve often wished I knew how to knit. I think that would be a perfect waiting room activity. My personal recommendations are adult coloring books, your Bible, and conversation.

I’d highly recommend dressing in comfy layers. Temperature often varies drastically by the room you’re in and no matter the procedure or surgery you’re waiting on, it’s going to be a long day.

Bring a cell phone charger and let family and friends know ahead of time you may not be able to update at regular intervals. Depending on where you are in the hospital will depend on what kind of cell phone service you have.

On Your Way

On your way to the hospital, allow extra time to stop for your favorite coffee/ tea/ beverage and several snacks. For you. Since your little one likely can’t eat anything, you’ll feel bad consuming a large breakfast in front of them.

Or, if you’re like my husband, maybe you won’t.

But, either way, there are usually few decent food options in the waiting room, if any, and you may not want to make a run for food for fear of missing an update. Also, a muffin from the grocery store is far cheaper than the $5 dry and tasteless muffin wrapped in cellophane you’ll likely get at the hospital.

While You Wait

Once they’ve been wheeled away from you and you’ve said your very brave goodbye, you will get to experience the phenomenon of “hospital time”. The clock that, at times, flies by or stands completely still.

Now is when you want to take any opportunity to eat, drink, and use the restroom. I would advise against too much of the waiting room coffee, however. I still don’t understand why they provide every poor quality diuretic known to man. Not only does the caffeine not help anxiety, but about ten minutes into waiting I’m already too worried about missing an update to use the bathroom. And the only thing worse than anxiously waiting to hear how things are going, is anxiously waiting while simultaneously holding a full bladder.

This is the point I’m currently at. Doing my “busy” stuff, having a snack and trying not to watch the clock. Whatever you do, sit somewhere you can’t see a clock.

Sometimes, depending on the hospital, you’re back in the waiting room and sometimes you’re waiting in the pre-op room. I actually prefer the waiting room, if you have an option.

Here’s why. Look around you. Nothing helps distract you like connecting with other families in a similar situation. One of my best waiting room experiences was an all day affair during which two of my children were having surgery at the same time. Why? Because while I was waiting I was able to talk to another brave, waiting momma. This sweet lady was several states from home, by herself, with a medically complex kiddo while Dad was at home caring for their other young child. She’d been staying at a hotel for a week to have access to specialists, testing and surgery not available where they live. Things practically in my backyard that this particular anxious momma can forget to be grateful for.

Finally, try not to panic about time frames. You are literally at the mercy of the schedules of dozens of medical personnel. It rarely goes according to the schedule you’re given. If you’re worried, never be afraid to ask someone. They’re used to soothing worried parents, especially in a children’s hospital.

Do you have any helpful advice you’d add for caregivers? Please comment with it below!

Know a caregiver concerned about an upcoming procedure or surgery? Feel free to share!

Do you have a procedure or surgery coming up for a loved one that you’d like prayer for? I’d be happy to pray for you.