Genetic Disorder

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.

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.

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.

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.

Dissection of a servant heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And the answer is humbling.

Not always.

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

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

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

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

The Other Mothers

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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.

Fighting For Balance

/ bobbiblanchard / 4 Comments

It was the sideways glance and raised eyebrow from the pre op nurse that got me thinking. I can’t really blame her for not understanding because prior to life with medically complex kiddos, I wouldn’t have understood either. That they have medical, spiritual and emotional needs and each are just as important to maintaining some kind of balance in this crazy life of genetic disorders.

So, as they wheeled our oldest son out the door into surgery and I was sitting with our daughter in the same pre op room getting ready for her surgery, I explained to the nurse why I brought my thirteen year old son to see his first concert the night before.

I told her Imagine Dragons is his favorite band and his amazing aunt got the tickets for him for his birthday. I explained that he was very concerned that he not miss the last of soccer season, or the beginning of basketball season so this gave us a very small window in which to schedule the eye surgery. (Because, well, thirteen year old boy priorities.) I tell her that this rare disorder of theirs, Cerebrotendinous Xanthomatosis, comes not only with juvenile bilateral cataracts, but with a lot of anxiety. So, I scheduled the surgery on the only date available in between sports and brought him to the concert the night before. He had a great time and, although tired that morning, he was much less stressed about the surgery.

As the blood pressure cuff inflated and the heart monitor beeped I colored with our daughter and explained that for her, Dad spent the night playing Minecraft to distract her. The decisions aren’t always easy ones to make. Trying to balance all of their needs is hard. They are more than just flesh and blood. In the midst of endless lab work, exams, specialists and testing it has become more and more important that we make all of their needs a priority. Sometimes this means ice cream before dinner rewards for copious amounts of blood work. Sometimes it means skipping homework for prayer, not following that strict diet perfectly so that they can eat what the other kids at the party are eating or taking the injury risk for that activity that they love.

We have two medically complex kiddos and this means we have complex lives with complex decisions. And we’re just doing the best we can to meet ALL of the needs.

And you know what? Much later that day, our son was out of surgery, out of PACU and sitting somewhat patiently with us while we were waiting for our daughter to crack open her precious little eyes and the PACU nurse comments on how easy going and patient our kids are. After 12 hours in the hospital neither one were complaining and both were good naturedly trading jokes with us and the staff.

So, we will keep fighting for balance. We know our kids and their condition better than anyone else we come across, no matter their degree. Tonight, one day post op, they’re going to youth group. Because they want to, and it’s just as important as the medication they’re due for in an hour.

I’m not saying we make all the right choices. I’m definitely not saying we’ve got this thing figured out. Actually, we really screw it up sometimes. But, what I’m saying is, I’ve learned that our kids’ needs are complex and go far beyond the physical. I’ve learned that not everyone is going to understand that. I’ve learned that sometimes I will get a sideways glance and raised eyebrow at my decisions. And I’ve learned that that is totally okay. Sometimes I’m right.

D-Day

/ bobbiblanchard / 4 Comments

This week marks the anniversary of what I think of as my personal D-Day, or diagnosis day for our daughter. The day our world seemed to turn upside down and no longer made any sense. The repercussions causing me to land in the dark, and the next year learning how to rest in God, over and over again.

Reflecting on the last year, it has been on my heart to share some things with those of you who have, or are, experiencing your own trauma and suffering. Who may still be in that dark place. This letter is for you.

Dear Friend,

I see you. Always a compassionate person, I can now feel you in a way I never could before. The pain you emanate is palpable. I see the blank look in your eyes in a crowded room, not really taking in anything around you because the darkness you’re caught in has swallowed up the people and conversations around you. Your shoulders are hunched forward, curled around the pain and grief trapped in that place with you. Your smile a mere up turning of your lips. You’ve turned completely inward in the upside down. I don’t know if you’ll hear me, but I want to gather you in my arms and whisper past the shadows under and in your eyes. You’re not alone in there. Keep looking for the light and call out to Him.images (4)

Be careful. There may be bright sparks of anger, resentment and blame. Don’t follow them.They may lead you out, give you fuel to keep going, but they’ll only lead you to a life trapped in a place similar to where you are. Void of hope and truth and love.

Wait for His light. Maybe just soft at first, teaching you truth on your way to the surface, or for some people an all enveloping ride full of grace and love.downloadimages (13).jpg

Whatever that looks like for you, you’re bound to run into the hard but necessary truths. How utterly fragile, helpless and weak we are on our own. Don’t make the mistake of thinking this means you are unloved, or worthless. Just the opposite. You are so precious and loved Jesus will be with you through all of this. There’s no need to do it alone. When you look to the Lord for your strength, lay all your fears and pain at His feet, you can do all things through Him. Even THIS.images (8)

There may be friends and family that, unable or unwilling to absorb the shock, will distance themselves from it. But He will take that anger and resentment you may be tempted to and instead lead you to your knees in prayer for them and thanksgiving for those He’s placed in your life for this instead.

I assure you, His perfect sovereignty has the power to reach down and save you from this dark here and carry you all the way home. When you’re ready, He’ll be waiting. His love so powerful, perfect and faithful, He’ll take it all. And His yoke is infinitely lighter than yours.

There, in that place, you’ll find indescribable joy. The joy that comes solely from Him and has nothing to do with your current circumstances.

Dear one. I don’t know what your personal D-Day is. I don’t know if it’s a child’s diagnosis, your own, loss of a child or loved one, a life changing phone call at 2 a.m. I don’t know why God has allowed this in your life, but I know that He does. That regardless of how this feels now, His plans are to prosper you and give you hope and a future. Even if you can’t see any possible way for that to be true.

Look for, embrace and give thanks for every gift of grace. Big or small.images (7)

Hold onto Him, as He is always holding onto you. Remember His promises written on your heart and commit them to your mind.

Love and Blessings,

Bobbiimages (14)

I wish I could say that this particular anniversary came and went without any unwanted or uninvited memories for me. It didn’t. I woke to fresh memories of that day a year ago. Fear and pain springing up in place of my hope and faith. Sure that despite the blessings rained down on me over this last year I still didn’t have enough faith.

But in the remembering, I realized just how far from the dark He’s brought me, and how much joy I’ve found in His light.

images (1)

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.