blessing

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

Rock of Ages

/ bobbiblanchard / 1 Comment

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

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

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

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

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

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


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

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


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

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


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

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


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

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

Wherever You call me, Lord.

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

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

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

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

Good Gifts

/ bobbiblanchard / 1 Comment

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

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

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

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

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

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

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

Merry Christmas!!

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

Matthew 7:11

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

Hand In Hand

/ bobbiblanchard / Leave a comment

Twenty years ago our paths intersected somewhere the other side of Early Adulthood and there was something attractive in the easy, confident, way you walked. Even if I left a safe, observable distance between us for a bit. Eventually though, your persistence closed the gap and we stepped out together hand in hand for the first time. Hearts and fingers tentatively entwined and overlapping. Questioning, sideways glances through lowered lashes revealed a contrast of broad, safe shoulders, thick, strong forearms, but genuine, kind blue eyes and gentle smile. Always smiling. How does a girl resist a combination like that? A girl whose road up until that point had been a little dangerous and lonely?

We continued into a new territory, Together, me and you. Though I’ll admit my focus was most often on you, I was quite amazed at all the new things I could see. With you beside me. Shadows weren’t so long or menacing and you taught me to jump over puddles and sidestep hazards, smiling all the way. Before I knew it, I had almost stopped looking back over my shoulder and was learning to live facing forward.

This next leg of our journey, though, brought us into Commitment and required a quick jump over a broom. Youth shiny new and dressed in finery we glowed and holding hands, made the leap and the promise to stay the course together, forever.

Then, holding our forever hands with new joy and confidence we continued on. The whole world seemed to open up, spacious, in front of us. Oh, how beautiful those days were! The way the sun shone on Possibility in the distance and all sorts of lovely trails appeared as we checked the map. We spent hours wandering along the way, discussing and deciding which one to choose. There were a couple of rough patches (much easier to navigate together) in the beginning then, but nothing that slowed our progress.

Feeling like we could conquer, together, any path we chose, we went for what appeared the most challenging. We took a deep breath and passed the sign welcoming us to Parenthood. Things sure speed up a lot then. Sometimes I wondered why there wasn’t a better description on the map, or more warning signs at the entrance, for it sometimes felt like we’d picked the diamond run as amateurs. But for the most part, we navigated all of the obstacles “Dirty Diaper Ditch”, “Pacifier Pass”, “Sleepless Slide” and several “Trust Falls” together. The going was tough, but the rewards were great and we emerged on the other end with three precious people we’d been entrusted with for the rest of our journey. They’re loud, expensive and exhausting but we found they definitely make the trip more beautiful.

Checking our map again, we realized our choice to visit Parenthood limited our next steps briefly and the terrain looked slightly more winding and definitely slower going (as we’d come out with more baggage than we’d thought). Given our three extra hands to hold, we decided to stay awhile next to Family Forge and focused on raising up and providing for our pack of five. We settled in and made plans for “after”. For when they finished school, chose paths of their own and found someone to travel with. We worked, saved, spent, planned and enjoyed the time and things we amassed here.

Looking out across the hills one day we watched storms gather menacing in the distance. We’d been relatively protected from extreme conditions in that forge but as soon as I saw that horizon turn purple, the little hairs on my arms stood up and I glanced at you scared, waiting.

Giving my hand a quick squeeze, you didn’t smile, but turned away and set to work. This time though, the broad shoulders and work rough hands were no match for the approaching storm. We sold what we could, searched high and low for shelter, to no avail. As the forge flooded and filled we held on to each other for dear life and even though we still had each other, we were tossed so violently to and fro we could barely keep our heads above water. Terrified, my foot brushed up soft against an Anchor. I’d picked it up a few years before, had moved it into our home and had been studying it when time allowed as it seemed to lend a constant, quiet comfort. That moment though, it seemed to come alive and hold me fast. The storm didn’t cease it’s battering, but held firm by the Anchor I was able to once again grab your hand and those of the children.

The waters receded, we caught our breath, but we’d be forever changed. You kept on moving, working, fixing, taking on anything you could to restore what we’d had, to forget about the change of the landscape as if by sheer force of will you could move the mountains that had shifted directly onto our path. We often held hands in the quiet, without words. You with the weight of us on your shoulders and me with my gaze on those mountains. Exhausted, we had no idea what to do or which way to go next. Gone seemed our confidence and definitely our joy.

But during the clean up. Sifting through the debris, I kept resting on the Anchor. The workload for the days seemed unchanged, the mountains remained immovable, the horizon still tinged grey, but there was always the promises of the Anchor to hold me fast. In those promises I found the joy I thought carried away. And it remained, regardless of circumstances.

I’ll never forget the day you tripped on that Anchor. The way you wrestled with it for days.

You didn’t need the Anchor.

It was enough that it was in our house…right?

But that load you were carrying left you too worn out to fight it for any longer. Led to the Word to study the Anchor of our souls, the Creator of our mountains immovable and the love of our Savior, you invited Him in. Into your heart, into our home and into our marriage.

We’re working our way now, hand in hand, following Christ, around our mountains. Sometimes hand in hand is through tears. Sometimes it’s through laughter. But still together. Always thankful. Because now we both know our final destination (even if we don’t know what will happen in between), that we’re never alone, and our God is bigger than any mountain we come up against.

A couple weeks ago you insisted we jump over that broom hand in hand again. Renewing former promises and making a few more that are meant to last the rest of our journey together and acknowledging the source of the love that has, and will continue, to sustain us along the way.

Blessed to make this journey hand in hand, with you, Hubby.

Blessed by Less

/ bobbiblanchard / Leave a comment

This 4th of July morning bloomed sticky hot in the Midwest. One thing I’ve learned in the 20 plus years of living here is that when the humidity hovers anywhere near summertime Fahrenheit in these parts, folks run for water, ice cream and air conditioning. You see, that long, hard, winter freeze gets right into our blood while we’re hibernating up here and thickens it right up. As a result, our inner thermostats consistently read approximately 20 degrees above the rest of the country. You laugh, but wait till you see us in shorts and flip flops in 50°. (How else will they get a full month’s use?)

So, this morning everyone is running to family cabins, lakes, boats, and barbeques. We’ll celebrate our Independence Day with loads of red, white and blue, fireworks and food. If we have a veteran, we’ll bring him or her an extra hot dog and thank them for their service. Later, at a more reasonable temperature, we’ll break out the Smores and probably some apple pie and sparklers. Off and on today I’ll think about the privilege of living in the land of the free. And because of God’s grace, I’ll also think of the responsibility that implies.

Just a few years ago I bought the kids their “Fourth of July Outfits” that they’d never wear again. Hubby spent a ridiculous amount of money on things that would literally go up in smoke and we had just gotten back from a rather expensive, but fun filled week long family vacation. Things were good. I called myself blessed. I was thankful. I’m even more so now. But a lot has changed since then. The things I considered myself blessed with are quite different. These last few years we’ve been richly blessed with LESS.

I realize this is a very anti American sentiment on a very American holiday, but let me explain. I have this thing about comfort. Sometimes it gets all confused in my head with security and love. And it wasn’t until God removed many of my comforts that I realized the depth of this confusion of mine. If you’d asked me if I believed in a prosperity gospel I’d have told you, “No!”. But, I did on some level, believe that if God loved me he would provide for me the way I wanted. Turns out, since He loves me very much, he allowed me to learn that my security and love comes from Him alone, and not my circumstances. Since I’m a rather slow learner, and I really do desire comfort far more than I should, this is a process that will likely continue until He calls me home.

Here’s the crazy thing. Our lives will never look the same as they did a few years ago. Our bank accounts will never be so full, our credit will likely never recover and all those future plans we had will look completely different. Yet, I feel so richly blessed by less.

Today, I can say “no” to my children and know that it’s okay. That just because I CAN give them something, doesn’t mean I should. I know that even without a penny to my name I’ll still know my Father loves me because I’ve felt that love when I didn’t even have that penny. I’ll watch the town fireworks somewhere and be unafraid. Seriously, this is a big deal for those of you that know me. (Whoever thought explosives were FUN and decided to incorporate them into a celebration for a country that earned it’s freedom through deadly explosions…. well, you see the irony, don’t you??) And I’ll celebrate more than just my freedom of speech, right to assemble and bear arms. I’ll celebrate my freedom from a few idols and fears that held me captive for a long time. A little rain might adjust my plans for the day, but not by any means ruin it. There are far worse things than getting wet.

Yup, I’ll be celebrating my anemic checking account with a day at home, sparklers (hazardous sticks of flaming metal I’ll let Mini Hubby hold) and hopefully a good barbeque and quality family time. Thank you, Lord, for functioning air conditioning and a roof that doesn’t yet leak!

Friends in low places….

/ bobbiblanchard / 2 Comments

There’s this thing that happens when your world gets a lot shaken up. When the ground beneath your feet shakes, gives way, and everything kind of starts to fall down around your ears. Some people are going to run. These same people may have been there from the beginning. May have helped you build all those crumbling things. But when things really got scary, they headed for safer ground. They may have glanced back over their shoulder, hearts in their eyes, but they half jogged away. Now, I’m not blaming them. Really. I’ll explain why later, but first I want to tell you about the others.

Then, there are the other people. The ones on the outskirts that happen to hear the roar, that even as the ground is giving it’s last rattle, are already calling out to you in the rubble. The ones that rush forward, roll up their sleeves, and start digging through the debris. When the dust settles a bit and the Son starts to break through in rays of light shot through darkness and you start to stumble your way out of the mess, they meet you with open arms. They brush off some of that dirt to clear your eyes and start feeding you living water. You start to catch your breath.

And these people, they stick like glue. Even as remnants of the past are raining down on your head, they drape an arm across your aching shoulders and walk beside you through it. As the aftershocks rumble through what’s left of your life and you’re standing shocked and overwhelmed, they start picking through what’s salvageable, identifying what’s not, and arranging for what’s needed. They work tirelessly to meet your needs, physical, emotional and spiritual. The labor of their hands surpassed only by the labor of their hearts.

They don’t stop there. Remember, like glue. They stand ready to help you rebuild. They point out the defects of the previous structure, and make sure, this time, you’re building on solid Rock. A firm foundation.

We’re rebuilding, from the ground up. It’s quite a process. One, I’ve heard, that takes a lifetime. We’re learning that these people are part of the process. Strategically placed, by a loving Father, to bless us in ways we’d never imagined. We thank God for them daily. For their encouragement, support, prayer and almost constant help.

And here’s why I don’t blame the ones that ran. We can make terrible friends. If you don’t know and follow Jesus, there’s really no worldly reason to stick by us.

What’s happened to us is likely one of people’s biggest fears and something they’d rather not come in contact with. Not that we’re contagious, but we’re a reminder that hard things happen. Could happen to them. Something they’d rather not think about. People who love Jesus tend to have less fear of the unknown and more trust in a loving God to get them through whatever He allows for them.

Also, we often give little back. Put plainly, we’re needy. We have seasons when all of our energy, both physical and emotional, necessitates our total focus on the kids. That leaves little time to invest in others and begs people to invest in us. Unless you are giving of your resources, time and energy to follow Jesus, you will quickly tire of these things not being reciprocated. Frankly, there’s not always much to be gained by caring for us.

And recently, it’s come to my attention, that it’s just plain hard to do life with us sometimes. So, if you ran the other way. I understand. You’re forgiven. Completely. Because I’ve been forgiven. And because I can’t say with all certainty, that I wouldn’t have done the very same thing before I’d been saved by grace myself.

Now, just one more thing….

Dear friends that stick with the power and love of Christ,

Thank you. And stop it. No, not the sticking. We sincerely appreciate that. But the “survivors guilt”. When the ground isn’t actively shaking beneath our feet, allow us to love and care for you in any way we can. This is the truth in love right here. It is a kindness to help us not only keep our gaze up, but out. When our entire focus isn’t absolutely required for some major thing we might have going on, it’s not healthy for us to be focused on ourselves. We welcome those seasons! And we welcome the opportunity to talk about the “normal” difficulties we all encounter in a fallen world. Please don’t let our different circumstances separate us. We are, after all, headed in the same direction. None of our journeys are easy. And we might not be able to help at that moment. But what a blessing for us if we are! And if we can’t help in a tangible way, we’re privileged to pray! One of the greatest gifts God has given us is a community of people who not only grieve and rejoice with us, but the ability to come alongside and grieve and rejoice with them. We want to be part of both. Even if our grief and joy may look a little different. Allow us to be your friend in your low places (and the high ones too). We’re eternally grateful to have you in ours.

Love,

The Blanchards

He Gave Me Wings

/ bobbiblanchard / Leave a comment

I spent over thirty years learning how to survive and succeed in a fallen world. How to protect myself from the hurt and disappointment that goes along with living in a world saturated with sin. This world taught me that I’d need a tougher skin. To reach the safety and security I craved, I’d need to find success. And to find success, I’d need to somehow cushion myself from an onslaught of pain and suffering and aggressive, hungry souls seeking to protect themselves as well. Over the years this resulted in creating a cocoon of sorts. Block the hard things. Bury the hurt and disappointment. Don’t cry useless tears. Believe what is being spoon fed in every media outlet and social platform. Protect yourself.

The result was a thirty something woman, wrapped tight in an unraveling cocoon. Desperately trying to control everything that threatened the “safety” of that cocoon. That safe place became a breeding ground for fear and depression. Every story that filtered through, of things uncontrollable, would give birth to a new fear, a new anxiety. Even ensconced in this “haven”, she knew this wasn’t working anymore. From the depths of that cocoon, her heart cried out.

chrysalis

Now, I wonder, did He miss me in there, like we missed “Chris”, or was He excitedly waiting for the transformation?

 

When I first started my journey with Christ, things unseen from that dark place of fabricated protection, written on my heart, became clearer. His light was breaking through. Six rows back, on the left side of the worship center, I’d catch glimpses of light. Hands and hearts in front of me raised in worship, Truth poured out in messages. Drawn to the light, I’d come back. Oh, how I wanted to bottle it, that held, just as I am love, and carry it with me for the next week. Absorb His word and love and wring it out when the fear and darkness were too much. But fear of getting too close, giving too much, held it illusive, confined to the worship center.

I’d come back. Drawn a row closer. So close! How do I hold onto it?

Because the more light I let in, the more I felt again. And though the joy ran deep, the pain did too. But like a moth drawn to light, I drew ever closer to Christ. Slowly unraveling years and layers of insulation, He called me out into the light.

Emerging scared and reborn, He gave me wings. To reach higher than I thought possible, to dive lower than I’d ever ask to go. It’s bright out here. And in contrast, the dark things stand out like never before. Some days, my heart just hurts. Those years of tears not shed seem to be making up for lost time. Most of the time, they’re not for me. But for the palpable suffering of those around me. Both for those who are saved and those who are perishing. And other days, the tears are joy that can’t be contained. Every time I get a glimpse of the light of God’s glory, the beauty and joy run so deep I’m a moth chasing the light again.

butterfly

We waited in anticipation for “Chris” to lose the last remnants of his former life and take flight.

 

Every day, my heart is grateful. Grateful for the wings that brought this woman to a heart wide open. That carried her to the front of the sanctuary, tears streaming, her soul crying out in worship and joy to the One who made her. This woman knows more pain than she ever feared, knows more love than she ever dared give or receive and knows true safety. Not in the artificial safety of her own making, but the true safety in living and walking with Jesus.

So, I’ll continue to take these wings and follow where He leads. I’ll just have to invest in some really good waterproof makeup.

flight

Tentative at first, hanging out on my finger testing his wings, “Chris” soon took flight.

As I was writing this, I was blessed with the chance to see this video at church of another incredibly beautiful transformation. LOVE His timing. If you have the time, it’s absolutely worth the twenty minutes to watch.

 

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)

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?!