Hand In Hand

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

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….

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

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

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

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?!