CTX

The Road to Calvary

/ bobbiblanchard / Leave a comment

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

/ bobbiblanchard / 1 Comment

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?

/ bobbiblanchard / Leave a comment

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.

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

Dissection of a servant heart

/ bobbiblanchard / 1 Comment

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. 😉

The Other Mothers

/ bobbiblanchard / Leave a comment

This mother’s day is a bit different than the past four. In a good way. Or a mostly good way. It started a few days ago when Oldest Son and Baby Girl had their latest appointment in neurology.

Neurology hasn’t been my favorite. This place of MRI’s, EEG’s, spinal taps, bloodwork and few answers but more questions makes my heart race nervous in the parking ramp. That day though, kids touched noses, hopped on one foot and images stayed the SAME. This momma breathed deep, exhaled grateful and smiled to her eyes for holding steady. Steady hands, steady legs and steady labs. This momma stayed up late overflowing grateful. And guilty. Heart rejoicing and heart weeping. Oh, she sang praises on the floor of her closet, wrapped warm in undeserved grace. Then prayed hard for the other mothers.

All of this mothering is hard. SO hard. But there is some mothering that hurts more than others.

The kind of mothering that happens when you lose a child to mother. I saw that this week. Prayed for that momma and hurt for that momma as she stood in front of a school she no longer had a child at. What does one do when you have a lifetime of love for that child and the lifetime is far too short?

The kind of mothering that happens when a child goes their own dangerous way. Prayed for one of those beautiful mommas this week too as she watches and prays and waits. Waits for that child’s saving, fully aware that she can’t be the one to do it.

The kind of mothering that happens when one does all the things to be a mother, but hasn’t been given the gift of the child. I prayed for one of these precious ladies too. For she has helped mother my own babies. Will continue to pray that she understands the beauty of mothering whatever children God gives you, no matter what that looks like.

And finally, the kind of mothering that happens with a special needs child. These other mothers weighed heavy on my heart this week. Because not all of them get to hear good, steady, news.

These other mothers stare fiercely brave into the hardest things. Things they won’t tell you. But I will. So you can pray for them too.

Their sleepless nights last far longer than those infant years. These warrior mothers navigate hospital halls, insurance denials, government paperwork and medical equipment. Always advocating, always fighting. They have grieved a diagnosis, mourned a prognosis. And if it’s a degenerative condition, they’ll grieve the loss of each ability, one by one, over and over again. And at the end of their hard days, their want to give up days, they might break a little knowing the only break they’ll get is when their heart breaks.

Or, they don’t have a diagnosis at all. Oh, I’m hurting for these other mothers too this week. You see, our diagnosis is CTX. And after years of research, I know about all the mommas before me that knew something was wrong. That did all the things to find the answers. And lost their babies before they found out what they were. I also know that there are likely hundreds of mommas out there right now, praying for this diagnosis and might not get it in time.

You see, I know I’m the momma that’s had a few hard years. But I’m also the one that gets the diagnosis, the treatment, the good doctors and the steady news.

So this Mother’s Day, I’m rejoicing and grateful for good news. And I’m praying for all the other mothers. That they know The Good News. That they find their rest in the only One who can give it to them. And that they know that there are mommas praying for the comfort and strength they need to persevere.

The Gift In The Concrete

/ bobbiblanchard / 4 Comments

The  last year and a half has been hard. Really hard. Watching your once “normal”, healthy, eight year old decline and helplessly standing by while dozens of tests and specialists tell you they don’t know what’s wrong has a way of slowly turning a parent inside out. You know it’s something serious, and you relentlessly pray for answers, but when you get them, you’re still grossly unprepared for the reality of it.

We now have TWO answers and I don’t like either one. The first is called Spinocerebellar Ataxia Type 8. Rare, genetic, degenerative, and would slowly rob her of her mobility over about fifteen years. You can see my blogs, The Dark and Alibaster Jar if you’re interested in seeing where that brought me. The second, newest, is Cerebrotendinous Xanthomatosis. I held it together slightly better (growth?) the second time around. See Hope . Also rare, genetic, and progressive, this one explains her cognitive decline, personality changes, leg pain, etc. The good news is that this one has an available treatment. The idea being to replace what her body isn’t making and pray that we can maintain normal numbers and stop the progression. The bad news is that each of our boys has a 25% chance of having this disorder as well and we are waiting on their genetic test results.

I’ve blogged a lot about the pain, loss, and grief over this journey but He has faithfully brought me through and given me so much love, truth, and hope. Everything I need, when I need it most. Thank you Jesus! The last couple weeks I’ve been struggling through something a little less dramatic. Sadness. The kind of sadness that hovers silently in the shadows of my mind while joy, excitement, hope, love, fatigue, frustration and worry bump around the rest of the space in there, jostling for position. It’s heavy presence is always there. Waiting. Just waiting, for worry or frustration to bump up against it, form an alliance, and squeeze hot tears out of unsuspecting eyes. I’m finding this happens most often when I come face to face with our present reality. Without having a chance to brace myself first.

The other day we were tackling 3rd grade homework when frustration and worry ganged up on me with sadness. We spent an hour repeatedly going over which hand was the hour hand and which hand was the minute hand. Something she had mastered in first grade. Abstract concepts are next to impossible with her short term memory impairment. Twenty minutes later, her newfound impulsiveness led to a screaming toddler and crying 8 year old because she had gotten frustrated, pinched him, and immediately felt terrible. At bedtime, she told me she didn’t want to go to Sunday school because she got confused. There was truly less light in my baby girl’s eyes! By the time I went to bed, I was in tears.

Father, PLEASE! Please don’t let us lose the compassionate heart you blessed her with too! Please don’t allow this disorder to rob her of the ability to understand the huge faith you’ve given her! This heart, this faith, that have been such a source of hope and comfort. Such a gift of grace to us!

Sadness dogged me the next morning and followed me through her occupational therapy session which left her tremor worse, her body sweating and exhausted, and her complaining of the pain in her legs. And as I broke out the Motrin:

“Mom, I’m sad.”

She has a few things to be sad about. “Why are you sad, baby?”

“I’m sad for all of the people that lived before God gave us Jesus.”

Her compassionate heart! But that’s a pretty abstract concept to grasp. Does she really get it?

“I wish He could have helped them get to Heaven too. But I’m sure happy that we were born after Jesus!”

Smiling through tears. “Me too baby girl, me too.”

Tear filled eyes closed and lifted to a bitterly cold Midwest winter sun, being covered in His grace and love, my heart cried out my thanks for a gift so beautiful!

I have little difficulty with the abstract. I’ve been blessed with an exceptional memory. I have no physical challenges. I’m pretty sure I aced third grade word problems involving reading a clock. But, I didn’t know the Gospel until I was in my thirties, and I struggled to understand and accept the love of my Savior for longer than I care to admit. (It really is a kind of illogical love, isn’t it?!) And I’m too embarrassed to disclose how long it took my heart to bleed for those that were, and are, perishing. Her existence in the concrete, the present, has apparently not hindered her faith, or her compassionate heart in the slightest. It begs the question, which one of us truly has a greater challenge?!  He will make clear to her all she truly needs to know, just as He will for me.

Baby girl, you bring that beautiful heart and concrete faith, I will bring the abstract, and we will grow in Christ together!

 

1 Corinthians 12:4-11New International Version (NIV)

4 There are different kinds of gifts, but the same Spirit distributes them. 5 There are different kinds of service, but the same Lord. 6 There are different kinds of working, but in all of them and in everyone it is the same God at work.

7 Now to each one the manifestation of the Spirit is given for the common good. 8 To one there is given through the Spirit a message of wisdom, to another a message of knowledge by means of the same Spirit, 9 to another faith by the same Spirit, to another gifts of healing by that one Spirit, 10 to another miraculous powers, to another prophecy, to another distinguishing between spirits, to another speaking in different kinds of tongues,[a] and to still another the interpretation of tongues.[b] 11 All these are the work of one and the same Spirit, and he distributes them to each one, just as he determines.