Hope

They said, He said

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Last week we were back in a building at our local university hospital that also houses their genetics department. It turns out the nephrology rooms are identical to the rooms on the genetics floor and it was a similarity I wasn’t prepared for. Over the last ten years we’ve utilized several specialities at this hospital, and three others, but none of them have had quite the same effect on me as this one did. From the moment Baby Girl and I parked in the ramp, to the moment we took the familiar seats in the exam room, my heart rate accelerated along with my memories.

It was ten years ago when they brought a box of Kleenex and a genetics counselor in to explain to us that Baby Girl’s genetic testing had revealed something called Spinocerebellar Ataxia Type 8 (SCA8). The blood roared in my ears while the black started to cloud out my vision and, seemingly, the oxygen in the room while they told us these are the conditions they hate to find. That there was no treatment and no cure. This progressive, degenerative, condition would slowly rob her of her mobility over the course of the next ten years. It would start in her hands and feet and work its way inward until it stole her ability to even breathe and swallow. And as time stood still in that room the next ten years raced behind my eyes and all of a sudden I was the one that couldn’t breathe or swallow.

Over the next couple of months we listened to so many tell us what to expect for Baby Girl in the future that it became almost impossible to live in the day. And when the lights went out at night, and I was alone in the quiet of her room, watching her from her trundle bed, it wasn’t just the specialists that spoke of her future.

The enemy would creep in, prowling like a roaring lion, seeking to devour any peace or hope for the future I’d desperately been trying to cling to.

“Ten years from now…she’ll be graduating…to a wheelchair.”

“Ten years from now…she won’t even be able to say the words, ‘I do’, never mind think about marriage.”

“Ten years from now…you’ll long for the days you could hear her breathe by herself at night, all night.”

And my sleep deprived, under nourished, emotionally spent and spiritually tormented self…wrestled. I wrestled with what “they” said. The specialists, the family members, the friends and the enemy.

Until I finally started to hear what HE said.

Slowly, the words of my Father started to drown out, or at least dull the edges of, the many voices around me.

Romans 5:3-5

3 And not only that, but we also boast in our afflictions, because we know that affliction produces endurance, 4 endurance produces proven character, and proven character produces hope. 5 This hope will not disappoint us, because God’s love has been poured out in our hearts through the Holy Spirit who was given to us.

And slowly, there was a hard fought and heart felt hope in the love of a Father that knew what it was to watch their child suffer and still poured out His love in our hearts.

Romans 8:28

28 And we know that for those who love God all things work together for good,[a] for those who are called according to his purpose.

Slowly, there was certainty that a God who used the ultimate evil act, the murder of His Son, for the Salvation of all who would believe, could somehow use our hard thing for good too.

Jeremiah 29:11

11 For I know the plans I have for you, declares the Lord, plans for peace and not for evil, to give you a future and a hope.

Slowly, I started to believe again that my Lord’s plans for me, and Baby Girl, were good, even if I couldn’t see how.

Today, Baby Girl turns 18. It’s been ten years. And, by the grace of God, nothing “they” said, none of the things “they” whispered to my tortured mind, have come to fruition. But everything HE said….did!

Baby Girl’s life isn’t what I had imagined for her. It isn’t always what I would choose. She struggles with the ordinary in a way that often breaks my heart. But she walks. She speaks. And she breathes on her own. More importantly, by the extravagant grace of her Heavenly Father, she does all of those to His glory.

But here’s the thing, I still find that when I’m struggling the most, the root problem is often the same. I am still listening to what “they” say, rather than what He says. The world has a way of lying so convincingly, so subtly, that I’m still often tempted to believe it. But I’m so incredibly grateful that I have a Savior that is absolutely committed to helping me hear HIM above the noise of my own fear and doubt.

John 10:27

27 My sheep hear my voice, and I know them, and they follow me.

And He says, that Baby Girl is fearfully and wonderfully made and His plans for her are GOOD.

Mercy & Responsibility

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Eight years ago, after voting, I made a Facebook post saying I couldn’t believe I’d voted for the person I just voted for. My feelings haven’t changed. Tongue in cheek, I giggled to myself while posting this meme.

But, like many Christians, I felt a sense of relief when the results of the election were announced. Not because I was thrilled with the person, but because I felt that person was less of a threat to my desire to lead a godly life. Less of a threat to the sanctity of ALL life. Less of a threat to me. That’s when I realized there was a whole half of our country that was feeling the opposite. The fear and subsequent anger is, for them, a very real feeling. They’re feeling a threat to the way they want to live their lives. And that’s a feeling, I’m certain, we should have compassion on as we increasingly feel it ourselves.

What if that fear gives us an opportunity to love them as ourselves? What if, the great, undeserved, mercy we received in this election comes with great responsibility?

I’m just old enough to remember a time when the church had not yet been replaced by government programs and giant corporations. Programs that our fellow Americans now rely heavily on. I can remember when the nuns ran the hospitals, nursed the sick, and put people over profits. I can remember when church doors were open 24/7 and people knew they’d receive a hot meal and clean clothes, a listening ear and prayer. I can remember when neighbors anonymously dropped boxes of food, diapers or winter clothes to families they knew needed it and freely gave of their time and talents to help them with things they couldn’t afford a professional for. I remember when families cared for their children and elderly sacrificially. I remember, when the church had the opportunity to function as the church was intended to function.

Within approximately ten minutes of the “good news for me” of the election results, I’d been convicted. What was I going to DO with this great mercy?

What was I going to do with my freedom to worship, follow and serve my Lord? Would my service extend beyond Sundays? Would it extend to my fearful and angry neighbors? Would it extend to embracing, not their sin, but them?

What was I going to do with that anticipated “extra” after putting gas in my tank and groceries in my cart? Would it go into my vacation fund, those new brand name shoes, or the bigger house? Would my extended budget, extend to my neighbors that will likely have less in their budget?

What was I going to do with the undeserved mercy my Lord had just given me? Would I accept it as a gift and hoard it to myself, or would I extend that gift to my neighbors and show them the abundant love and provision of the Lord I claim to follow?

Then, I got a little excited. What if…..

The Lord hadn’t just given me the freedom to freely seek after and follow Him, but the freedom to show my neighbors the God I’m fighting to follow?

2 Corinthians 1:4

who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

What if…

We get to be a part of showing our neighbors what we ourselves have found to be true? That our God provides? Remembering… that they have been deceived into thinking the government is their savior.

Our generation has been successfully indoctrinated to believe that our help comes, not from the Lord, but from the many programs that provide for them.

And those programs have not worked for their good. They have placed their feelings above truth. They have encouraged and replicated the sin that keeps them in their suffering. They have taught them that there is no single source of truth and left them to anxiously and despairingly define their own. In their misguided attempt to care for and love our neighbors by placating and affirming them, they’ve done them incredible harm. After all, how could a program love them well when it’s separated from the source of all Love?

By the grace and mercy of God, we are not separated. As I enjoy the freedom to openly abide in the source of all love and comfort, I’m praying for the opportunities that will hopefully come to love the lost, the fatherless, the widows, the orphans, and the afflicted. And show them what the church was meant to do, share Truth and reflect Christ.

Matthew 22:36-39
36 “Teacher, which is the great commandment in the Law?” 37 And he said to him, “You shall love the Lord your God with all your heart and with all your soul and with all your mind. 38 This is the great and first commandment. 39 And a second is like it: You shall love your neighbor as yourself.
What if America looked more like Zion than Babylon?
John 13:35
35 By this everyone will know that you are my disciples, if you love one another.”

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…

Where Are You?

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A few years ago Hubby and I sat in a university hospital waiting for two of our children to go into back to back surgeries. We took turns swapping in and out of their pre-op rooms, while joking with staff that we applied for a BOGO surgery discount but administration wouldn’t go for it. These were the first of six procedures they’d need on their eyes and it was a new area of health challenges for them. 

I still remember sitting in that cold, uncomfortable waiting room for hours just watching the patient ID’s on the TV screen as each child transitioned from room to room. I also remember regretting not following my own advice that morning. Number one rule of waiting room procedures is: no caffeine. First, caffeine and anxiety do not mix. Second, caffeine is a diuretic. So, my hands were shaking, my heart was hammering and my bladder was about to explode. And there is no good time to make a bathroom run when you’re waiting to see how your children are doing. Bodily functions must wait.

So, I decided on distraction. Perhaps a little Isaiah was in order. It’s often my go to when I’m anxious. I opened to Isaiah 6:8

“Then I heard the voice of the Lord asking:

Who should I send?

Who will go for us?

I said:

Here I am. Send me.“

I immediately thought of some of my favorite Christians. Both in the Bible and out. Sent by God for incredible Kingdom work. How amazing would it be to be sent like George Mueller; watching the Lord provide for thousands of orphans on a daily basis?! Or, what about Charles Spurgeon? Or C.S. Lewis or….

Then all of a sudden two familiar patient ID’s turned green and were transferred to post op. I grabbed my Bible, my cold coffee and Hubby and we each picked a post operative room. I got the child that likes to wake up slow. So while I listened to the automatic blood pressure machine and the beeping of the heart rate monitor I glanced back to my reading. And Spurgeon’s commentary on it.

“God is seeking a messenger to deliver his message to people. Isaiah did not know the errand; perhaps if he had known it he would not have been so ready to go. Who can tell? But God’s servants are ready for anything, ready for everything, when once the glowing coal has touched their lips.”

And then he describes the glowing coal as this:

“It represents purgation, cleansing, participation in the sacrifice and the putting away of sin. With a blister on his lips, Isaiah sat silent before God.”

My patient started to stir so her nurse did likewise. And as he started to encourage her to take deep breaths and not to rub her eyes I noticed him hesitantly looking at me. And since I also knew from past procedures that this was only the very beginning of her wake up, I struck up a conversation with the hesitant nurse. He mentioned that the staff had been enjoying our family that day. That Hubby and I seemed so content. And he’d noticed my Bible and wondered if I was a Christian. Over the next hour, our troubled young nurse questioned our faith, contentment and obvious playfulness with stressful circumstances. He had access to the kids’ charts, he knew their medical history. He’d seen and served countless families that didn’t respond the way we did. And all I could tell him was that it was by the grace of God. Then we talked about his new bride and their plans for a family and what to look for in a church home. And then it was time to go.

And all I could tell him was that it was by the grace of God.

A few days later I was sitting in yet another waiting room. We’d just found out one of the kids had scar tissue forming and needed an additional procedure so we were waiting on more tests. I was reading an update on a local missionary family and found myself in awe of what God was doing with their ministry. Like Isaiah, I sat in that waiting room, with a blister on my lips, having been purged of sin by the blood of Christ and feeling an awful lot like I’d participated in the sacrifice and wanting to cry out to my Lord:

“Here I am! Send me! Send me to big, far off, places! Let me scream from the rooftops who You are and what You’ve done!”

And as I looked around another crowded waiting room, I saw our young nurse round a corner and skid to a halt in recognition. With a hasty wave and a genuine smile, he said, “I’m so glad to see you guys again!” And wheeled his next patient into an adjoining room. And it almost echoed in my ears….

“I did.”

He did. 

He has sent us into the medical world where the wisdom and knowledge of man is highly esteemed while the Truths of God are deemed colloquial at best and foolish at worst. He has sent us to those in the upper echelons of academia, where many simultaneously wonder at our contentment, while scoffing at its source. He has sent us where we sometimes don’t want to be. Out of our comfort zone, into the trials of rare disease. But every once in a while, we get to marvel at where we’ve been sent, because He gives us a tiny glimpse of what He is doing there.

But every once in a while, we get to marvel at where we’ve been sent, because He gives us a tiny glimpse of what He is doing there.

A couple of weeks ago I sat in the back of our church service and looked around at so many of my struggling, faithful, Faith Family and as I prayed for each of their trials I thought…

Beloved, where are you?

The infusion room?

Treatment facility?

Attorney’s office?

Court room?

Food shelf? 

Widowhood?

Singleness? 

Childlessness? 

Single parenthood?

Perhaps, like Esther, you have been sent there for such a time as this.

I can’t always celebrate the places we’re sent. Sometimes it’s really hard, scary and exhausting. But I CAN celebrate that there are people there. People desperate to hear the message God has sent me with. That during this season of Christmas, we are not only celebrating the fact that God sent His one and only Son to be born in a manger, but that He sent Him to live a life we could not live, perfect and free from sin, to die a death we could not die, taking the punishment for the sin of all who would come to trust in Him for salvation. Then, rising again, He gave us everlasting life…with Him. And we can, and will, celebrate being sent there.

Beloved, wherever you are, can you recognize the hand of the One who sent you? And then, like Isaiah, wait on Him to give you the power and strength to do what He has called you to do? 

“To deliver His message to people”, wherever you may be.

Isaiah 40:28-31

28 Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. 29 He gives power to the faint, and to him who has no might he increases strength. 30 Even youths shall faint and be weary, and young men shall fall exhausted; 31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

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.

Carol’s Song

/ bobbiblanchard / 2 Comments

Tucked into some trees at the edge of a lake is where I found her. Well, first I found her in the yellow pages. Yes, back when there was an actual paper book and there were no maps, photos of facilities, or reviews to help you make your decision. Nope, my hope was simply that I’d find the “right” place when I really didn’t know What I was looking for.

I can still remember following the instructions for parking and the ramp to the side door. Still smell the warm pine trees, hear the skittering of birds in the trees and tiny critters in the leaves and hear my lone footfalls on the wooden ramp. Still remember my nervousness opening the temperamental door (that needed an extra nudge in the summer and sometimes didn’t close all the way in winter) and finding my way to the waiting room. And sitting on the loveseat, filling out paperwork, getting my first glimpse of Carol.

I would later wonder how someone so small in stature would come to be one of the most powerful humans I know. But at that time, I was comforted by my first impressions. Soft spoken with even softer eyes, I was reasonably certain she was someone I could talk to. You know, just long enough to sort out this anxiety that didn’t make sense.

And over the next few years, she would. Help me sort it, that is. She’d gently walk with me through childhood trauma, help me manage hard parental relationships and start changing generations of unhealthy thoughts and behaviors by teaching me how to parent my own littles and love my husband well. And all the while there was a Song in that room. Most of the time it was a consistent undercurrent, radiating from that small, gentle woman in the rocking chair. But every once in awhile it would peak and reverberate off the walls in a more audible question, or an observation.

Have you ever stopped and prayed when you feel overwhelmed like that?

When I’m thinking about the big questions in life, sometimes I find those answers at church. Have you ever been?

I know when I was a young mom, I really needed relationships with other young moms. It can be isolating spending all your time with young children. Sometimes they’ve got mom groups at the local churches. Have you tried one?

And the Song would tug at my heart and my thoughts until I did go to a church and ask the big questions. And got big answers. And I realized, a carol is a song.

And MY Carol is a Song.

Or rather, possesses and reflects, the Song of Christ. That gentle calm that attracted, comforted, enveloped and walked alongside of me? It was the promised Comforter the whole time. And later, that same Song would be positively fierce in protecting me. Fighting for me. And loving me through some of the darkest, most painful moments of my life. Christ in that tiny woman would make her powerful enough to help lift me bodily out of some of the deepest depths of despair.

I remember reading John 14:16 and believing Jesus when He said that the promised Counselor (or in other translations, Comforter) would be better for me; but sometimes still wondering how it was better for me than if He was still with us bodily and not in Spirit. It was much later when I would realize that it would be through that Counselor, in my counselor, that would testify to the same Spirit within me and bring me comfort that would surpass worldly understanding or expectations. And help me know Jesus in a way I couldn’t have had He not been in me, always.

John 14:16

16 And I will ask the Father, and he will give you another Counselor[a] to be with you forever.17 He is the Spirit of truth. The world is unable to receive him because it doesn’t see him or know him. But you do know him, because he remains with you and will be[b] in you.

And now, the Song is familiar, but no less attractive, no less powerful, and definitely no less comforting. And I still hear it in every conversation with my Carol. The in dwelling Spirit that constantly, sweetly, and faithfully points me to Christ.

Ephesians 3:20

20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us

But here’s the crazy thing. I didn’t ask. I didn’t imagine.

I didn’t even KNOW to ask or imagine. I simply dialed a phone number, found in the antiquated yellow pages.

And God still gave me a carol. Wooed me with a Song. And through that Carol, gave me more than I could have asked for or imagined. He gave me a spiritual mother that has often doubled as a physical mother to not only grow and encourage me and my faith, but helped to grow and nurture the faith of my family. He gave me a safe place to learn to trust, so that I could learn to trust my Father. He gave me someone to laugh with, cry with and always point me to Him. He gave me a treasure I will forever thank Him for. Because through my Carol, His Song, He has not only richly and generously blessed me, but He has fostered a legacy of faith in my family. In Hubby and my not so littles.

I can only pray that one day, I might reflect even a fraction of the Christ I’ve seen in her over the years.

That on occasion, those with me might hear an echo of the Song of Carol. For many years to come.

2 Corinthians 2:15-17

15 For we are the aroma of Christ to God among those who are being saved and among those who are perishing, 16 to one a fragrance from death to death, to the other a fragrance from life to life. Who is sufficient for these things? 17 For we are not, like so many, peddlers of God's word, but as men of sincerity, as commissioned by God, in the sight of God we speak in Christ.

You unravel me, with a melody.

You surround me with a song.

NOT an orphan

/ bobbiblanchard / Leave a comment

I have spent the last couple of months processing and praying about how to share this with you all. Because it’s an amazing thing. But in order to truly appreciate the provision, you need to fully appreciate the need. And though much of the need was of a financial nature, the emotional need was just as, if not more, important.

A few months ago, I was invited to participate in a podcast with an organization called Hunter’s Hope, to share how God has been, and continues to be, a very present help and Hope in our family’s lives as we navigate Leukodystrophy. Upon completion of those recordings, they invited all of those that participated to a retreat during which we would have opportunity for fellowship and community with those similarly afflicted and walking with Christ. It was a gift the enemy would try to steal. In several ways.

Shortly after recording, I was approached about an opportunity to speak at a local women’s conference on Romans 5:3-5. Considering the timing of the invitation and the subject matter, I was certain this was something the Lord was asking me to do.

So, I was simultaneously proofing the transcript from the podcast, writing for the conference and writing a mini message for the retreat. I should add that none of these things are within my comfort zone. In fact, if I was to make a list of things I dislike, public speaking would take a top slot. I have a great story about a public speaking class in high school that involves hives and a “D”, by the skin of my teeth, that I would love to share with you sometime.

But I was also struggling with audience and subject matter. You see, whenever I share our family’s story with people I start to feel this “separateness”. Even with fellow Christians, I am usually reminded that our life is not “normal”, it just doesn’t look the same. Even with those that love Christ, there are many that will avoid us because they don’t know how to respond or relate to our family. Leukodystrophy often sets us apart. As I prepared, I knew I needed to prepare for these feelings as well. Yet, I am absolutely convinced of the need to share the incredible ways God has loved and provided for us. How we have had the opportunity to know Him, trust Him and love Him more intimately through trial.

Then there was the retreat. I am a homebody. I don’t like travel. I prefer routine and the familiar. So, I was preparing to step out of my box. Because it was a gift. But as I prepared for that retreat, I knew I had to prepare for another kind of “separateness”. Within the world of Leukodystrophy, Hubby and I often struggle with survivor’s guilt. Because our kids have a treatment and have received that treatment in time to positively impact their quality of life. In those circles we are acutely aware that we are the minority and that the quality of our children’s lives has come at the great cost and contribution of so many beautiful children that came before and paved the way for things to speed diagnosis and treatment. And my heart breaks for those families. I grieve with them and wonder why our children were spared, while theirs were not. Survivor’s guilt.

So, there I was feeling stuck in the middle. Acutely aware of our “separateness”. Simultaneously feeling sorry for us and feeling intense gratitude. When Oldest Son borrowed my car….and it blew up. Okay, now you’re likely picturing a fantastic fiery explosion. But it wasn’t that dramatic. It turned out to be the engine that blew up. Which is much less impressive than one would think. It just quit. And sprayed liquid all over the highway. Done. Kaput. Dead. Or, as the sympathetic mechanic explained, “catastrophic failure”.

Now, this would likely be stressful for almost anyone. But, when your credit was completely destroyed by a diagnostic journey and you had saved and saved to buy that vehicle outright…. For it to barely last a year, it’s a little more than stressful. It’s downright frustrating. And when you have absolutely no savings to replace it and no way to borrow money to replace it, it becomes a bit of a crisis.

So now I’m feeling the “separateness” on a whole different level. Because now I’m aware of another way in which I often feel alone. And this is one part I wasn’t sure how to share. So, in order to honor my mother and father, and to love you well and protect your hearts, I will simply say that due to the fall, we don’t have much family to give us a hand. Or a co-sign. Or a down payment. Or maybe just a hug.

This is when I MAY have indulged in a small(ish) self pity party. In my mind’s eye, I always picture Baby Girl at about two years old, laying on the floor of the kitchen at my feet, face down, with her hands covering her eyes. And that was my inner self. Channeling my inner two year old, still sitting at my Father’s feet, but in silent tantrum mode because I didn’t like what was happening. Although, if I’m honest, it wasn’t completely silent. There may have been a little dialogue along the lines of….

I’m doing all the things! I don’t like to speak, but I’m gonna speak. I don’t like to travel, but I’m gonna travel. I’m going to feel all the feels I don’t wanna feel and step out of my box and I’m gonna shine my light and I’m gonna tell of Your goodness, even if it might kill me (okay, there was a little bit of drama) and we could sure use just a LITTLE bit of protection while we do it! A hedge. Even a speed bump for the enemy to slow him down would be helpful. Heck, could You blow up HIS engine instead??

So I took the gift card from a sister in Christ for travel expenses, packed my bags and stepped out in faith. With no plan but His because we had no way to fix it.

And surprise, surprise, He had a plan. And it was SO much better than I could have asked for or imagined.

It started with a borrowed vehicle and the gift of time so we could try to save enough money for a down payment. Hopefully enough of one to qualify for a loan. We hadn’t used credit in seven years, I was inwardly preparing for the best case scenario of a ridiculous interest rate on another “lemon” from a shady dealership. But we’d have a vehicle, and that was the important part.

Then, it really got good.

We were down to one more week with our borrowed wheels and I’d just put on my list to cancel the next couple of weeks of Baby Girl’s occupational therapy before I started dinner. Mini Hubby was climbing walls and getting on stressed nerves so I sent him to take out the garbage and get the mail while I got making chili.

My kitchen is still holy ground.

I’m chopping onions and garlic and singing Shane and Shane’s Psalm 46 (One of my “fight songs” because it reminds me how big my God is) and my heart is softening with sautéing onions and the stress drains off with the juice of diced tomatoes and the door bangs open with an oblivious boot from an oblivious boy and both boy and blur of puppy race by with a stack of mail and a lot of noise and I laugh because…holy ground. While my chili simmers, I open this.

And it all goes quiet. Even the boy and the puppy. And while the chili burns and my ears ring and my eyes and nose fill, the Lord leans down and grabs my face in His hands and tenderly tells me,

“You are NOT an orphan. Stop acting like one.”

And now I’m laughing and crying and the “separateness” is gone because the Love envelopes me and crowds it all out. And I don’t even care that my holy ground smells suspiciously like scorched dinner and I run into Hubby who can’t quite wrap his head around what I’m holding.

Because that kind of outrageous generosity takes awhile to process. And when you know that the generosity came from an outpouring of love for a little girl lost to Leukodystrophy, it gets even more complex.

I spent the next several days “God Crying”. This happens quite a bit in our house. When the kids have caught me at it, I used to have to reassure them that it was a “good cry”. While texting with someone one day auto correct redeemed itself and changed my “good cry” to “God cry” and I realized it was far more accurate. They’re tears of awe, gratitude, joy and love. I think, a form of worship. And if you’ve ever heard me sing, you know it’s a form of worship that is far more beautiful, even if it’s an ugly cry.

Now I’m gonna feel a little like Billy Mays, because, “That’s not all!”. While we were still processing a week later and narrowing down our car search, we got an envelope. With another $1,100. Which brought the total to almost EXACTLY what we paid, with tax, for the lawn ornament with the blown engine. And this generosity came from the other side we sometimes feel “separate” from.

When that car engine blew up, I could not have imagined a scenario in which we would have our needs filled so completely. But even better, in a way that reminded me of my perfect Father’s love and care for me….through people that so thoroughly removed those feelings of separateness. Through our Leukodystrophy family and our church family. So much more than I could have even thought of or imagined, never mind asked for.

Ephesians 3:20

Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us

Do Not Be Deceived….

/ bobbiblanchard / Leave a comment
No.
Uh uh.
Just stop.

There are few lies out there that get me more hot under the collar than this one. There is certainly no shortage of twisted scripture, verses taken out of context or outright lies out there. In fact, it took me only a couple of seconds to find this garbage, and hundreds more like them, in the dump of social media. However, this particular lie has hurt me and so many I love. Just look at the natural progression of thoughts…

He doesn’t. He knows our every weakness and knows that we are only dust.
Oh, beloved, He knows.
He knows, and it’s okay.

What could be more discouraging than knowing, without a doubt, that you can’t handle something and being told you are wrong?

If this is true, what is wrong with me that I can’t handle this thing?

If this is true, what is wrong with God that He doesn’t know my limit?

I am convinced this particular lie originates in the pit with the sole intention of driving us to despair. Hoping to convince us to give up. On ourselves and our God. And like most lies, there is usually a small measure of truth. And that’s where I think this one is dangerous. Here is where this Truth was twisted. 1 Corinthians 10:13 says, “No temptation” — or test, since it is the same word in Greek — “has overtaken you that is not common to man. God is faithful, and he will not let you be tempted [tested] beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.” The key part of this verse is left out of all the “inspirational quotes”. HE will also provide the way of escape! By His grace, His mercy, HIS POWER, HE will enable you to endure it! NOT your own strength! What a relief that this burden, whatever it is, does not fall on me alone! What freedom in knowing I can fall to pieces on occasion because I know my God has it! What peace in the assurance that my all knowing, all powerful, all loving God will enable me to endure through this thing!

No pulling up of bootstraps, no putting on my big girl panties or acquiring the stiff upper lip (whatever that is)! Thank God!

So, what do we remind ourselves when we have reached our limit? What do we tell the friend that has lost the child, the beloved parent, the spouse to adultery, the health to cancer, the house to financial hardship, the family and friends to addiction, etc.? We tell them the Truth and light up the dark places and we tear down the lies threatening their peace that surpasses circumstances.

  • God does not give you more than you can handle WITH HIM. And if you are in Christ, you are NEVER without Him.
    • Matthew 28:20 “teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age.”
    • Psalms 139:7 Where shall I go from your Spirit? Or where shall I flee from your presence?
    • Psalms 145:18 The LORD is near to all who call on him, to all who call on him in truth.
    • Hebrews 13:5 … God has said, “Never will I leave you; never will I forsake you.”
    • Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”
    • Isiah 41:10 “Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
    • We could do this all day…. But you get the idea.
  • God DOES give us more than we can handle. Even the Apostle Paul assured us he was given more than he could handle. None of us are immune. As stated in our original verse in 1 Corinthians 10:13, trials are, unfortunately, common. We live in a fallen, broken, world.
    • 2 Corinthians 1:8 For we do not want you to be unaware, brothers, of the affliction we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself.

During a time of year that is stressful for many, overwhelming for others and often full of grief and disappointments, don’t fall victim to this lie! Don’t let the enemy drive you to despair. Be cautious with the “inspirational”, seemingly biblical quotes and memes that abound. A true test of the truth of many of these is to ask the question, “Is this making much of me, or God?” and, “Is this asking me to rely on myself and my own understanding, or God’s?”. If the answer to these is God, it’s probably good. However, don’t stop there! Look for yourself. Get into the Word, our only source of Truth, and make sure you’re not being deceived!

Friend that is struggling during this season, do not be deceived. Christmas is not merry for everyone. But our Hope is not in our current circumstances. If we’re in Christ, our Hope is in what He did on the cross, taking the punishment for our sins, that we would spend eternity with Him. And the MANY promises that we are not alone and He will enable us to bear what we carry here.