Christ

What I Told My Kids Today

/ bobbiblanchard / 2 Comments

As headlines, graphic images and special reports flooded the airwaves today my kids couldn’t help but catch wind of tragedy. Of pain. Of loss. Of hate and anger.images (4).jpg

“Mom, why are so many bad things happening?”

Ugh! How to explain a fallen world to innocent, soft confused hearts?

“I don’t know baby. God tells us we live in a fallen world where bad things sometimes happen.”

“What do we do?” Anxious words from a tiny heart that wants to help. To DO something. Don’t we all?

“We pray. We can pray for protection and pray for all the people who are sad and angry and hurting.”

“What do we do if something bad happens here?” Oh, to wrap them in bubble wrap and bolt our doors. But no.

“We look for God. ”

“But we can’t see him. What if we’re still scared?”

“He’s promised to always be with us. We look for Him in the people we see. Look for the helpers He’s sent. Whenever there’s something bad, look for the people helping. Sometimes they’re a police officer or fireman, sometimes they’re a man in a suit, a man covered in tattoos, or a teenager with baggy pants. Sometimes they’re black, white, brown or yellow. They help people out of fires, pull people out of car accidents, help fix their injuries, carry babies to safety, hold people that are crying, pray with people who are scared. But they’re there.”

“Does God send helpers everywhere?!”

“Oh yes!! He sent us too! Remember? We’re strong and brave because God is with us and loves us! And we love everyone as much as we love ourselves so we will help if we need to!”mms_20160709_001718

“I’m a helper?! God’s helper?!”

“Yes! We are! And there are lots of us. Just remember to look for them, and be one!”images (1).jpg

“Because we can do all things with Christ who gives us strength….right?”

“Right baby.”

2 Corinthians 13:11

11 Finally, brothers and sisters, rejoice! Strive for full restoration, encourage one another, be of one mind, live in peace. And the God of love and peacewill be with you.

Psalm 23:4

4 Even though I walk
    through the darkest valley,[a]
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

Deuteronomy 31:6

6 Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

Pursuing Love In The Valley

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This week marked 14 years of marriage for Hubby and I. Though as a young bride I couldn’t have imagined the victories and valleys we’d share youth made me sure that we’d conquer both together, victorious.

I remember hearing of longtime, happily married couples whose lives had been shaken with grief and loss so powerful it was as if it had been an earthquake. A perfect “10” and the aftershocks had left their marriage in the rubble. I’d also heard of happily married couples who’d taken that rubble, and rebuilt something stronger, and more beautiful out of the pieces that were left. images (18)I often wondered what had happened to the latter. I couldn’t imagine a scenario in which Hubby and I would not cling to the one person under the sun who knew us best. After all, we’d experienced hardship and loss before. We are so very different by nature that where one of us had been weak, the other had been strong. Those strengths and weaknesses had complimented each other and served as tools to help each other through.

But what happens when you are both weak? When neither of you have any strength? When both of your plates are full to overflowing with grief, pain, loss, stress and worry and your cups are empty? How do you help your spouse balance those emotions when your own plate is dangerously close to dropping? You can’t.

I couldn’t. This last year we experienced our own perfect “10” and what I found was that my cup was empty. I barely had the strength to balance my own plate, never mind relieve some of Hubby’s burden. I could not lighten his load. I could not cure our children. I could not pay the mounting medical bills. I could not give him peace and comfort when I struggled just to save myself. So I prayed to the One who could.

Isaiah 40:29

29 He gives strength to the weary
    and increases the power of the weak.

Father, please take this from me! But if this is Your will, please fill my cup and give me the strength to bear it. Please lighten this overflowing plate.

Ah, but He already did.

And He was patiently waiting for me to remember that He himself would carry the load. Would give me His strength. Had already offered to fill that plate and cup with His bread and wine!download (1).jpg

As I surrendered more to Him,my burden became lighter (Bread is rather light) and He filled that cup with strength born of hope. And made me aware that I needed to love Hubby. Not the feeling, that was still there. But the action.

Father, I don’t know how to help Hubby, Please give me the strength, wisdom, and knowledge to love him the way he needs right now. 

I was reminded of a message years ago images (14)by our pastor in which he shared praying for God to help him see and love his wife as He does. This ended up being to make the bed,but I was sure that wasn’t the answer for Hubby (Though I’m ALL for expressions of love that include a tidy bed). I was really sure that Hubby was going to need a lot more. So….

God, please give me Your eyes so I can see. Help me to see him and love him as You do.

images (13)

That’s it? It does not seem like enough. Not for this.

But when I kept my focus on meeting Hubby where he was, as he was, being patient and kind, and praying continuously to see him as Jesus does, and love him as Jesus does it was a powerful thing. I became more aware of his pain and suffering, which was hard, but it naturally evoked more patience and kindness. And in return, lightened his load and opened his heart towards me and towards God.images (16).jpg

Yes, love is God, and God is love. And, our love is stronger and more beautiful now after pursuing it in this valley than it ever was before.

My cup overflows…..

images (15)

Follow Me

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I recently had the privilege of hearing a message from one of the founders of a relief organization called Tutapona. Eight years ago, Carl, his wife Julie, and their young family picked up and moved to Uganda to provide trauma and rehabilitation counseling to what would turn out to be thousands of refugees in the area. Carl provided an update of their progress, a victim’s heart wrenching story and the relief she found in the program, and plans for Tutapona‘s expansion to Iraq.

In a sanctuary full of Christians, Carl posed the question of how many Christians were truly followers of Christ. He maintains that to simply believe in Christ as our Lord and Savior, is not enough. A true transformation of the heart will cause a transformation of your life. We are called to be disciples. This term implies active participation on our part. An outward reflection of our inner faith.

dis·ci·ple

(dĭ-sī′pəl)

n.

1.

a. One who embraces and assists in spreading the teachings of another.
b. An active adherent, as of a movement or philosophy.

Sharing several verses in which Jesus states “Follow Me”, it is pretty clear that Jesus intends us to, indeed, follow Him. (I searched on my own…and stopped counting at 19)

follow me 2

Often, when processing a message, I am gifted with images that help make sense of, and usher important information to be stored and filed in the orderliness of my long term memory. Over the past few days, I have a clear picture of a classroom full of Christians. All have professed to accept Jesus Christ as their Lord and Savior. Jesus silently enters the room and speaks two words.

Follow Me.

That’s it.

Now, there is a person in the front, center. Let’s call her A+Disciple. Her hand wildly waving, squirming in her chair, she’s practically shouting, “Ooh, Ooh, Pick me! Pick Me!”. The Christians in the back are mulling things over. I’m sitting in the middle, off to the left, unobtrusively hiding behind someone taller than I am. I take a couple of deep, bracing, breaths. You know the kind; in through the nose, out through the mouth. And resolutely raise my hand.

If I were to “unpack” my reserved response, I believe it’s not necessarily fear that has me mentally preparing myself. I think it has more to do with the seriousness of the invitation. The knowledge and respect of what this commitment requires. There’s a (not so nice) part of me that wonders if A+Disciple truly appreciates the gravity of what she’s signing up for. At the same time, noticing her unreserved joy at the offer makes me wonder what I am lacking in faith that makes me so somber at the thought of following Him through anymore valleys that I sometimes can’t hold onto the joy of the promise of my final destination?

(This is when I’m reminded of Julie. Bless her beautiful, honest, Christ filled,heart for sharing her lack of joy when first called to uproot her family from a place they’d grown to love and follow Jesus to Iraq. Was she willing to follow wherever He led her? Absolutely. But even she had a moment where she raised her hand without chair squirming, arm waving, JOY. I also like to think maybe she will be saving a seat for me next to her on the bus?)

follow me 6

A+Disciple is skipping to the bus while I am mentally “packing”. Repeating comforting scripture and pondering how many toothbrushes I should bring? After all, God seems to keep His itinerary pretty close to His chest. Now, A+Disciple is, of course, already on the bus, in the front seat, not so patiently waiting for the journey to begin. I see the loving smile Jesus welcomes her with and wonder if I’m worthy of the same reception. After all, I’m not exactly skipping in line, but putting one foot resolutely in front of the other while holding onto the promises written on my heart.

But He does.

He smiles at me with love and understanding. The same invitation. The same reception. Accepting me as I am, where I am.

Follow me.

Okay.

And those Christians now sitting, watching from the curb? He smiles at them with love too. Patiently waiting for them to pick up their cross, and follow Him too.

follow me 3

The disciples on the bus are surely in for hair pin turns, low valleys, some rough roads (after all, the road less traveled is bound to be bumpy) and the most beautiful destination. Sitting in the middle, staring at Jesus, I find the JOY. When I’m focused on Him, and not what’s coming up ahead, I find the joy in the knowledge that not only has He made a way for me, but He’ll be with me through the whole journey.

So where are you on your discipleship journey? Are you dancing with joy ready to leap into anything He calls you to? Are you sitting, prayerfully waiting for instruction? Or are you still sitting on the curb deciding if you really need to pick up your cross and follow Him?

follow me 4

UPDATE:

If you are already on “the bus”, are daring to be a Disciple, please take a moment to view the following video and prayerfully consider supporting the ministry of Tutapona either through prayer or a financial gift and help many more to follow Jesus. ❤

So Close

/ bobbiblanchard / 3 Comments

When your life unfolds like a heart wrenching drama. When you get that phone call at 2 a.m., those test results come back, a uniform shows up at your door, your loved one shudders their last breath and the curtains suddenly close on that life you had and the lights fade to black. You can be sitting in that theatre surrounded by people, completely alone. And the One your soul is crying out to is silent.

I’ve talked with so many people who have walked through suffering and have recalled the same thing. During their darkest moments, biggest trials in life, God’s silence seemed to echo louder than the beating of their broken hearts. During my own darkest moments I’d pondered things I’d heard. The Footprints in the sand poem and “The teacher is always silent during a test”. Neither sat well with me. Partially because neither seemed to have any Biblical backing. I wanted real answers. Real truth. Where was He and why couldn’t I see Him, feel Him, or hear Him when I’d needed Him the most?

I recently read Ann Voscamp’s One Thousand Gifts. And I was blown away by her thoughts on a piece of scripture I’d read plenty of times before but now has been rolling around in my head for weeks.

Exodus 33:22

22 When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by.

What if, when it’s the darkest, you feel the most alone, you could have been so close to the One you needed, you could have practicallyimages (3)

Reached out

And touched…

Holy

Wait. What?

Yes, what if during those loneliest, soul wrenching, heart breaking, moments.

He was passing by

images (4)

And placed you in a cleft in a rock. Mercifully covering your eyes until He passed.

But wait, it gets better.

Exodus 33:23

23 Then I will remove my hand and you will see my back; but my face must not be seen.”

Then, when you’ve exited stage left of grief, the curtains open again to slowly reveal your new normal, and you can see. You can see His perfect timing, His masterful weaving once He’s gone by. He’d been there all along. Closer than He’s ever been.

When it had seemed like the world’s worst cliffhanger, you hadn’t been hanging to the edge of a cliff at all, but been carefully placed in a cleft instead.

And if you’re currently in the dark, achingly silent, loneliness of that cleft, patiently waiting for His glory to pass, for the chance to see, feel and hear Him again, know that He is SO CLOSE.

Blessings,

Bobbi

Baptism

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Well, I did it! I was baptized! What a beautiful, emotional, experience shared with a loving church family and friends that came to support me. This act of obedience, this outward sign of my inner change, was a long time coming for me, and something I said just two years ago that I would never do if it meant getting up on that stage. I was wrong. Thank you Jesus! Below is the short testimony I shared, along with photos a friend took to capture this moment for me.

Baptism4

I was raised in houses devoid of faith and crumbling in brokenness. Addictions, neglect, abuse, and abandonment were the foundation of my childhood.  He who knit me together in my mother’s womb, carried me safely through and gifted me with the desire to seek love, security, and safety. The world told me where to find it. I went to college, married a wonderful man, was blessed with two happy, healthy children, had a comfortable home, two new vehicles, a savings account, college funds, the privilege of staying home to care for my family, and plans. A life better than I ever dreamed I could have.  FB_IMG_1458346556622

Imagine my surprise when I was still plagued with terrible anxiety and depression.  I was led to a therapist, Believer, and now beloved friend. Who used her gift of compassion, patience, and love to, over time, chip away at that decaying foundation to make room for something more solid. She encouraged me through the doors of the worship center where the Holy Spirit opened my eyes for the first time to the gospel, with a heart finally ready to receive it. For several years He worked in my life, laying a new foundation in Christ; A carpenter, creating a new structure of trust, faith, and belief through His word and His church. He even added a surprise room for a third happy, healthy child.

Almost two years ago I was hit by a storm in the form of genetic disorders that I know, had that new foundation not been laid, would have taken down that new structure and I would not have survived the fall. Those transient, worldly things that I had held so tightly to and was so terrified of losing? The things I was sure would bring me love, security, and safety? Some of them were washed away. Healthy kids, financial security and plans made way for true love, security, and safety in Christ. Surrendering everything I have and everything I am to my Savior (sometimes on an hourly basis) has freed me from overwhelming fear. His blueprints for my life may look vastly differently than the plans I had, but He has shown me time and again that He and His promise are trustworthy. And the love, safety, and security I searched tirelessly for can be found seated at the right hand of God. I will follow Him, wherever He takes me, all the way Home.

Acts 22:16

16 And now why do you wait? Rise and be baptized and wash away your sins, calling on his name.’

 

Baptism3

 

Spring

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Darkness, defined, is the absence of light. Buried deep within it, immobilized by the weight, you lose sense of up or down, left or right. Scents and tastes do not penetrate. Why am I here? What do I do? How do I get out? There is a penetrating coldness that seeps in and permeates your deepest corners.

Just when the isolation threatens to consume you, you start to hear. You’re not truly alone. The warmth of the Son thaws and softens the weight. The reassuring stirring within you brings an awareness of life. In the absolute stillness you listen thoughtfully and prayerfully and gain a sense of direction. HandsThere it is, the hand to guide you. It’s been there all along, holding onto you. You just couldn’t see it. But now, you can feel it. You grab on tight. And hold onto the promise that He will never let you go. Fall

Hands and prayers lift you up. The process is painstakingly long. You’re in too deep and you’re not strong enough to make it on your own. You lose your grip. Your process is slowed. But He hasn’t lost His. Powerful, loving hands still hold yours. Words written on your heart become a mantra in your mind. Phillipians

 

Hold on.

Follow Me.

You can hear the soft rain of truth gently poured out, raining down and saturating the dark around you.

Tighten your grip.

Light

Now you can see it. The light of the Son, penetrating the darkness and overcoming it. Your path is becoming clearer and you are pushing through.

FB_IMG_1456855923754

You were not buried at all. You had been planted. You weren’t just struggling to the surface, you’d been laying roots. Roots deep enough and strong enough to hold fast to the truth planted within your heart. Tenderly sprouting to the surface, buffeted by the cool winds of spring, soaking rains and thawing snow, you strain towards the light of hope in the Son.

Roots

And rejoice in the roots sewn so deep there is promise of the strength to endure, to persevere, to grow in Christ, and bear much fruit. The darkness is fresh in your memory and there are some bruises from the battle to the surface, but the darkness did not overcome!

And now! Now you can see the beauty of His grace surrounding you. His creation coming to life, blooming in a palette no artist can capture. You can hear His birds singing His praises and smell the damp earth shrugging off the last remnants of frost.

I will bask now in the warmth of the Son, soak in every last drop of truth poured out onto me, grow roots ever deeper in Christ and bear as much fruit as He calls me to. For today is the day that the Lord has made and I will rejoice and be glad in it for His glory, and my good.

 

Food For Thought

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spiritual milk.jpg

I encourage you to listen to the above podcast of a great message from our pastor, Mike, a few weeks ago on 1 Peter 2 in it’s entirety. However, if you are short on time, for the purposes of this particular blog, at the very least skip to about 31:45.

At about 34:20, if you listen closely, you might be able to hear me giggle and clap. Convicted. Because this image came into my mind.

birds

I’m convinced that our beloved pastor has, on occasion, looked into our congregation and seen this. If you look closely, that is me, the one on the right screaming, “feed me!”. I spent years (I know, right?) walking into that worship center waiting and begging to be “fed”. I longed for pure spiritual milk. I was dependent on someone to take a chunk of the meat of the Bible, dig into it, digest it for me, and feed it to me on a weekly basis.

This, in itself, I don’t think is a bad thing. We have all been places where, consumed with trial or suffering, we require a helping hand to “feed” us. And there are people perfectly gifted to nurture us in this way. But what happens when this is our only source of nourishment? We will have a “failure to thrive”. If you’re a parent, you know those are some of the worst feared words of a parent. There comes a time when milk is no longer sufficient to sustain your child’s growth. And, there comes a time in your walk of faith that it’s not sufficient to sustain your spiritual growth either.

So, what had stunted my own spiritual growth? Me. I had some ill conceived notions that my only source of nourishment was supposed to be corporate worship. That instruction manual was huge, and was surely meant for people gifted to read it, interpret it, and translate it into layman’s terms for “the rest” of us. Thankfully, I was pressed to take a Bible 101 class and with my first true step of obedience, I signed up. I learned some incredible things. First, I can read it. Second, He intended me to read it. And third, the more I read it, the clearer it becomes!

Another blessing in that step of obedience was the encouragement from those that were gifted to teach it and obedient in using that gift for His glory. They provided me with resources to give me the confidence to dig in on my own. Our pastor, Dave, shared a “light bulb” moment on a verse he had read just that morning for probably the hundredth time. They, too, looked up answers to questions they didn’t know. If these people still learned something new after years of study, if they still had to look up answers to questions, and still used tools to find them and consulted other Believers, then maybe I could too! Suddenly, this very large book of instructions seemed manageable and not so intimidating.

I like to think that I may have now progressed to toddlerhood. I still require supervision. I am still learning the rules and gaining the self control to follow them. I have a lot to learn, but I do know where to look for help when I need it. Some of my steps are clumsy but there is so much joy in the successful completion. I have days, okay sometimes weeks, where because of circumstances I still require a good deal of hand feeding. But now there are also days that I rejoice in some newfound taste and texture that He has revealed to me and the discovery only whets my appetite for more! Those days, I am praying hard for the next “growth spurt”!

Have you ever experienced a “plateau” of your faith? If so, what helped you move past it? What was holding you back? If you are currently, I challenge you to step out, however wobbly, in obedience. If you are actively seeking Him and His truth, He will meet you where you are, with the nourishment you need!

1 Peter 2

2 Therefore, rid yourselves of all malice and all deceit, hypocrisy, envy, and slander of every kind. 2 Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, 3 now that you have tasted that the Lord is good.

Hebrews 5:12-14

12 In fact, though by this time you ought to be teachers, you need someone to teach you the elementary truths of God’s word all over again. You need milk, not solid food! 13 Anyone who lives on milk, being still an infant, is not acquainted with the teaching about righteousness. 14 But solid food is for the mature, who by constant use have trained themselves to distinguish good from evil.

 

Revelation

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When we built our current home, my favorite room was the kitchen. After leaving my career as Electronic Data Interchange Coordinator for Chief Executive Homemaker years before, my kitchen had become my “office”. I spend most of my time there so I put a lot of thought into the layout and décor. Ten years later, I still love this space, even if it’s probably getting a little dated. The pale, warm, butter yellow walls, light oak cabinets, and accents of sage green, cream, and tan never fail to relax me. My favorite time of the day is (late) morning when warm sun pours in through windows dotted with sticky fingerprints, reflects off those yellow walls, and fills my kitchen with a sense of calm that belies the chaos it’s usually in. The counter tops are a magnet for things like forgotten homework assignments, chapstick tubes, and Hello Kitty erasers. The refrigerator is decorated with masterpieces created by grade school artists on one side, and the front sports a hard working calendar that schedules five precious souls. My “drop spot”, well organized with slots for unpaid bills, things that need to be filed, and hooks for keys is usually overflowing and accompanied by an assortment of chargers and their accompanying electronic devices. The sink is full of evidence of a well fed family and my stove top constantly needs to be cleaned because of pots that have boiled over during busy evening meal preparations. My oven is never clean for very long and the proof is the smell of apple pie drippings when you turn it on because as soon as I clean it I am guaranteed to forget to put a cookie sheet under my next pie or overflowing casserole large enough for our family. My office is not perfect. It is well worn, hard working, well loved, and the center of our home. I can only pray that it is a reflection of me, as it is the place I am most comfortable in.

I know some amazing women who diligently spend time with Jesus, every morning, in their “cloffice” or “war room”. If you’ve read some of my other posts you will know that I’m not talking about myself. My current Valley finds me with three young children and two of them now with medical concerns. I spend much of my time on the “needs” of my little family but I am slowly learning to incorporate Mom’s time with Jesus. And what I’ve discovered is that there is something special about my kitchen. Maybe because, as the esteemed Homemaker, this is my office. Or, maybe it is simply because I spend so many hours there surrounded by dirty dishes, school work, meal preparation and clean up, and the never ending scheduling required of a family of five. Or, it could very well be because it’s the place my children often avoid for fear of being put to work. Whatever the reason, I realized yesterday this seems to be the place He comes to me, and I to Him, most often.

As I’m prone to do, I was doing my morning chores, undoing the damage to my kitchen the night before, and worshiping while I worked. This time, I was singing and dancing to Third Day’s “Revelation” while emptying, filling the dishwasher, and washing pots and pans. A quick peak into the living room confirmed the toddler was content with important robot building. I had a moment to pray.

Father, please show me what to do. I can’t see the completed work of this valley, but you do. Tell me, please, do I stay or do I move? I truly need a revelation here Lord!

And once again, I was brought to the floor of my beloved kitchen. Staring at those hard wood floors Hubby labored to give me, which were currently covered in dog hair, cat hair, a few crumbs, and a Lego I would find again later with bare feet. This time though, it was with grateful tears streaming past lips curved into a smile on a face upturned in gratitude to my Father.

Child, I’ve been telling you. You just haven’t been listening.

I sat on the floor shaking my head as the pieces that had been eluding me for months rolled around and miraculously fit themselves together.

Thank you, Father!! I am so sorry for not listening. Thank you for once again pursuing me. For pouring out yet more grace and love and meeting me where I am to gently and persistently open my stubborn eyes!

You see, He had answered my prayers. Several times it turned out. But, because it wasn’t the answer I was looking for, one of the options I had in mind, I didn’t see it.

Psalm 23:3 (NIV)

3     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.

Psalm 17:6 (NIV)

6 I call on you, my God, for you will answer me;
    turn your ear to me and hear my prayer.

Toddler robot construction completed, he was hungry. He may have been a little surprised to find Mom on the floor, crying and smiling. He may have even been questioning my sanity. I set him up with his lunch at the  kitchen table. As usual, he ate his pickles first and asked for more. I assured him I hadn’t lost my marbles and that he still needed to eat the rest of his lunch before he got any more pickles. Two minutes later, maybe testing my mental status, he asked again. I told him we go over this every time, just because you are looking for a different answer, doesn’t mean I’m going to change my mind. I don’t know where he gets this from?!

 

Blessed

/ bobbiblanchard / 5 Comments

I ran into an old friend this morning in the line at Caribou. And because I hadn’t seen her in years, I was unshowered, devoid of a stitch of makeup, and wearing whatever was in reach as I rushed to get the kids out the door for school. If I hadn’t been plagued by a kidney stone all night I might have made a quick exit before she noticed me, but I had, and I was just desperate enough for caffeine to forgo vanity in exchange for it.

“How ARE you?! I was so sorry to see your last update.”

She had seen my Caring Bridge update the day before. The one in which I shared that our oldest son had also now been diagnosed with cerebrotendinous xanthomatosis. But, low on sleep, I thought she was referring to my Facebook post about the current battle being waged somewhere between my kidney and my bladder.

Self consciously zipping my coat up higher over my rumpled clothes, “I still haven’t passed the darn stone. Which is why I look like I just rolled out of bed. I did manage to brush my teeth though…you’re welcome!”.

“You have a kidney stone on top of everything else?! You guys just can’t catch a break, can you? I can’t believe everything you’re going through. I’m impressed you’re even out of bed!”

“Oh, it’s been a very long year and a half, for sure. But we’ve been so blessed too!”

Looking at me now like I’ve sprouted a fancy new pair of horns out of my unbrushed hair, “What?”.

“Well, I can tell you that I really can’t think of another thing that would have literally brought me to my knees as swiftly and completely as something happening to my kids.”

Confused stare.

Trying to clarify, “Well, my salvation is a pretty big blessing.”

“Oh. Sure.” She was clearly looking for a blessing a little more short sighted.

“I can assure you, if He hadn’t given me the grace to see all the good in this, I am positive I really would be in bed. Curled into the fetal position, drowning in all of the ‘What if’s’ and ‘Why me’s’!”

As understanding passed across her face, the line moved and she grabbed her coffee. “Well, I hope you feel better soon! It was nice to see you. I’ll be thinking of you guys!”.

“Thank you! Nice to see you too!”.

I was thinking about this conversation after I got home and was a little more awake. She’s not the first person that has commented on my mostly positive outlook. It occurs to me that though I update the Caring Bridge site regularly I’ve tried to keep it strictly about the facts and about the kids. So, I haven’t shared on there WHY I am hopeful and the details on how I know we’ve been blessed. I feel like I could write a book on all the ways He has demonstrated His sovereignty, grace and love to me in the past year and a half.

Let me count the ways He has loved us …

1. My salvation. This is pretty self explanatory. Though He’d revealed the Gospel to me some years before this, and had been working in my life for some time, the surrender of the things I held most dear and my dependence on Him had been slow in coming. Nothing makes a person realize their own limitations like illness!

2. Hope. My hope in eternal life.The knowledge that even if this life under the sun was crazy hard, even if He chose not to heal our daughter, even if one of our other children were effected,  EVEN IF His plan was different than mine, I could hope in my forever home.

 

James 1:12

12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

My hope that no matter what the tests, specialists, and research says, our God is bigger than all of that. That the One who made the heavens and Earth had made these children as well and loved them more than a whole flock of sparrows.

3. Knowledge. Now, I’m not claiming any great IQ or anything, but He did bless me with enough intelligence to wade through hundreds of websites touting words and statistics that would make your head spin. I have a system of printing out research and case studies, highlighting the medical jargon, and translating it into layman’s terms in the margins to be able to go through and read it. I have found, with very rare disorders, that arming myself with information and verifying it with specialists has been highly beneficial.

4. Wisdom. Also, I don’t claim to any great wisdom of my own. He has not only led me to important people and information, but given me the discernment to know what I need to, when I need to know it in order to get the right care at the right time for the kids.

5. Truth. Time and time again He has poured Truth into my life. Through messages at church that seemed directly poured from His lips, to my ears. Through faith filled fellow Believers that have encouraged me and repeatedly pointed me to His word. Life giving bits of love and hope everywhere I looked! Even in the middle of the night, when pain and worry plagued me, He led me to my Bible and my knees.

6. Anxiety. Yes, the anxiety I diligently prayed relief from. So often I confessed to this anxiety, asked for forgiveness for not trusting Him, and begged that He would fill me with faith and peace. But even this, I know He made good. That anxiety fueled many sleepless nights of research, pressed me to dig deeper, look further, and to be diligent and persistent in finding medical answers. I truly believe He left this with me for our good, and His glory. Further evidence? He took it away. We’re not even close to done with hurdles and specialists, and testing, but I was on my way to our last appointment and it was gone. Now, I’m a mom, I still have a Master’s in worry. But not the anxiety that daily threatened panic attacks, headache and nausea and kept me up all night. Just gone. Because it’s no longer for our good, and His glory.

7. His Timing. The blessing of seeing His intricate weaving play out over the past year and a half has been absolutely awe inspiring!! He is The Master Weaver! Some things, of course, were not apparent at the time. But He was always working, whether I saw it or not. Let me share the basics…

Master Weaver

When I noticed our daughter’s tremor, I brought her to her pediatrician. He immediately referred us to a neurologist. To my dismay, they were booked out three months! The pediatrician agreed this was too long to wait, and referred us to Children’s Hospital. They fit her in in two weeks and did testing to look for life threatening causes. When those tests came back okay, the neurologist said he knew of a neurologist that specialized in movement disorders and referred us to him. This neurologist was great and immediately started extensive testing. As each new symptom developed, more tests. No answers. When he had exhausted all modern medical testing he referred us to a geneticist at the University.

We received her first diagnosis six months ago. That geneticist sent us back to her neurologist .After extensive research, I questioned the amount of symptoms not explained by this disorder and much of the information was from research done by a doctor who was currently at Stanford. When we saw her neurologist he said he had actually worked with this doctor previously and would contact him for his opinion.

The doctor told her neurologist to have us contact the genetic counselor involved with his research, who happened to still be at the University! I ran into a road block trying to contact her via the labyrinth of menu options on their phone system and no one was calling me back. Explaining this to a friend, she said her daughter actually had that same geneticist and genetic counselor when she was diagnosed years ago…and got me her direct phone number. She called me back the next day and after hearing of our daughter’s symptoms, diagnosis, and age, recommended that we continue with the full genetic panel.

We were warned, that patients that had undergone the amount of testing as our daughter rarely got answers from this testing, but it would be a good idea to just make sure that we weren’t missing something treatable, as many of the patients with her diagnosis had multiple disorders. She did. When the results came back, this genetic counselor consulted with a neurologist that had, amazingly, seen two other patients at another facility with this disorder. Since it is extremely rare, 1 in 200,000, and maybe only around a hundred current cases in the United States, we were elated. Until we found out our oldest son had it too. But, this neurologist already knows where to find the medication, that it needs to have special approval by the FDA, and is looking into how to get it to us.

I was led to research that proved to me that the kids diagnosis at 8 and 12 is nearly unheard of. That  because of our daughter’s atypical presentation, our vigilance and persistence, they may be the youngest in the country receiving treatment. They literally don’t yet have a pediatric dose! Average age of diagnosis is 37, when they are disabled by mental retardation or psychiatric problems. Life span without treatment is 40-50 years. Many cases are diagnosed post mortum. Sobering. I don’t know why He allowed this into our lives yet. But I do know that He has given them the best possible chances of a good outcome. We suspected nothing with our oldest until getting Joelle’s diagnosis and reading about it. Without God’s perfect work in carefully weaving this together, we could very easily have had a much more awful outcome. Now, would I have liked Him to cure these babies? Absolutely. But that’s because I can’t see the finished work. We are just a strand in it. But He can, and what a blessing is that?!

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.