Valleys

Do you trust Me?

/ bobbiblanchard / Leave a comment

Outside my room family life goes on as evidenced by the scuffling of two dogs, the clanging of dishes in the sink and the musical notes signifying the end of a wash cycle. But inside, the fan whirs and a sliver of light slashes across the comforter through closed shades where we lay trying to find the calm and quiet. Her head in my lap, my hands in her hair.

I whisper soft words as her whole body trembles and her breath comes fast and choppy. Almost as fast as the tears sliding down her face. I hold her in my arms as I’ve done since they handed all 6lbs 4ozs of her to me. And like too many times in her sweet little life, I can’t make it stop. So I just keep holding her body while it lies to her, stuck in fight or flight mode, and whispering truth to her heart while her mind tries to convince her that her body is right.

“Take deep breaths. There you go.”

And I do it with her because I need them too.

I rub her back and feel her breath hitch as she fights for control.

And I bite my tongue to keep from crying myself.

“You’re okay. You’re safe. Everything is okay.”

“But it’s not.” She says. “It doesn’t feel like it. I don’t understand things. People get mad at me. I make too many mistakes. I need too much. No one stays.”

“You are doing just fine. You are loved exactly as you are. You don’t need too much. I stay. Jesus stays.”

But I’m also entering fight or flight mode because I don’t understand this. Oh, the panic I’ve experienced, but the panic that is a result of mixed up genes and mangled myelin and messy hormones? This I don’t understand and I don’t know what more to do to fix it. We’ve tried all the oils, done all the therapies, taken the walks, ordered the weighted blankets, breathed really deep, talked all the talks, tried the meds, and PRAYED. SO much.

And now I’m the one that is convinced I’m not okay. That I keep making all the mistakes. That I need too much in order to help this girl. So I pray some more. For more help. More wisdom. More ideas. And I ask Him to stay. Because I feel far from okay.

Then, there’s another wave of fear and tears and I pull her closer and whisper, “Do you trust me?” and there is a muffled nod with more than a little snot rubbed into my shirt.

“Do you trust me when I tell you that you’re okay? Do you trust me enough to tell your feelings that they’re wrong, that everything is going to be okay?”

And for just a second I can see it…….

My Father bending over me, bending over her, saying, “Do you trust Me when I tell you that you’re okay? Do you trust Me enough to tell your feelings that they’re wrong, that everything is going to be okay?” And I breathe deeply in unison with Baby Girl and we hold each other as our bodies relax and our heartbeats slow and I praise the One that stays.

I can’t understand it. I can’t fix it. I’m not enough. But I know the One who does understand. I know the One who can fix it. And I know the One who is enough. For both of us.

So we’ll keep trying to figure it out. We’ll keep trying the things. We’ll keep making the mistakes. We’ll keep praying. And we’ll keep trusting the One who holds us. Even when our feelings and bodies tell us differently.

The lumpy, bumpy road…

/ bobbiblanchard / 4 Comments

This road we’re on sure has a lot of stones in it. The narrow path can be hard to navigate. Trying not to fall to the left or the right is tough when this road less traveled never seems to stay straight. Instead, we’re full steam ahead on a journey that has more twists and turns than the county fair roller coaster. I heard someone say once that if you’re bored as a Christian, you’re not doing it right. If there is any Truth to that, I have to believe we’re really rocking this following Jesus thing.

But the really cool thing I’m finding about maturity is that my reflexes have greatly improved. Usually, at a new bump or bend at break neck speed, I start with crying out. Right away I know to approach the One Whose stamp of approval has been placed on this detour. I occasionally start with the “Why me”, followed by (a little bit whiney), “What is it about me that requires THIS much correction?” Or maybe “What am I NOT learning?” and sometimes, “How long, Lord?”. This is a much quicker stop than it used to be. Because, well, reflexes. Muscle memory? Practice?

Next, I move on to remembering. Because when I’m nervous or scared or just plain tired, I know that I fail to practice some basic safety measures like looking in the rearview mirrors. Looking at where I’ve been reminds me of how I’ve gotten through, and Who is always traveling WITH me. Over every rough patch, through every close call, I can find strength in remembering that those situations seemed precarious at the time too, so surely there is hope yet for this one.

Then I slow down and remember to check those side mirrors and watch my blind spots. Because, in remembering, I’m reminded that this is when the enemy delights in trying to destroy. Destroy my peace, destroy my calm and destroy my deep breathing exercises. A bit of defensive driving here is absolutely crucial. I grab hold of that manual, that map, that Word of God and speak Truth to myself where lies threaten to sneak up on me.

This last couple of weeks I had some difficulty navigating. We hit a few bumps. The A/C went out in my van. Which isn’t such a big deal unless you have a kiddo that doesn’t regulate their body temperature well. Then, there’s the water heater that suddenly quits. And in the midst of a cold shower, another bump. Or rather, a lump.

In my breast.

And if any of you have experienced this kind of bump in your road, you may know the kind of road I traveled this week. It took a twist at the ultrasound, after the mammogram, when the radiologist ordered the core needle biopsy. Though I’d been in regular prayer over all our bumps lately, I will admit that the big medical words like radial scar and inter ductal carcinoma had me doing more of what would be considered, praying continuously.

I prayed continuously as they prepped for biopsy. I prayed continuously when that room looked more like a crime scene than an exam room. I prayed continuously that I would not lose my lunch, that I would remain conscious, and that they would finish soon. And as it was all over, I prayed for wisdom for the staff that would interpret the results.

Curled up with a couple of ice packs that evening I was still praying. My busy mind in direct contrast to the stillness of my living room, I made a familiar stop at “Why me”. Because I was feeling a bit…. afflicted.

Why us? Why finances? Why always medical problems? Why SO HARD? Why can’t we have “those” problems instead? You know, the ones those other people have? How much longer, Lord? And this whole pity party collided with gratitude for a Father that tolerates the questions of His struggling children.

So I finished my devotional. I finished my daily reading and I prayed for the ability to hand it all over to Him. For a peace that surpasses circumstances. Because I knew He could provide it, I turned off all the lights and crawled into bed.

When Psalm 41 flashed insistent through my head.

I don’t know Psalm 41. Is that in the first book, or the second? I’ll look tomorrow.

I tossed, turned, fluffed and got back up to take some more Motrin. Then tried again.

Lord, I know You already know those biopsy results and You’re already ahead of our every need. Please help me remember that and rest in You.

Psalm 41

1, 2 & 3…

That seemed rather specific so I picked up my phone and looked it up quickly on Blue Letter Bible.

Psalm 41
Blessed are those who have regard for the weak;
the Lord delivers them in times of trouble.
2 The Lord protects and preserves them—
they are counted among the blessed in the land—
he does not give them over to the desire of their foes.
3 The Lord sustains them on their sickbed
and restores them from their bed of illness.

Giggling and crying, because that’s how I roll when the Creator of the universe lowers Himself to not only hear my prayer, but whispers comfort in illuminated text. I shut my phone off and went to bed. And slept.

The air conditioning is still broken, the water heater still needs to be replaced and biopsy confirmed what’s called a radial scar. Benign, it should require no treatment, but will at least need to be removed.

But I have it on good authority that we are being protected and preserved and we will be delivered in our times of trouble. Not to mention being sustained and restored. I’m feeling far more peace about the road we’re on.

What Do You Have To Lose?

/ bobbiblanchard / Leave a comment

I just found out I lost another former classmate to suicide. Yes, I said it. Suicide. Because if we truly want to be there for them, we need to be willing to “go there” for them…to the uncomfortably dark places they’re in.

My heart has been breaking a bit today. Not just for the loved ones that are left behind (I’m so sorry) but also for the despair experienced by the one they lost. Because I’m acquainted with the kind of pain that makes you resent a sunrise, loathe your next breath, I can’t help but wonder if they knew the only One that can meet you in despair, and pull you through. Yes, this is where I’m going to talk about Jesus. The only topic more taboo, I think, than suicide.

Every grieving loved one left in the aftermath of suicide knows, you can’t be with them every moment.

I’ll say it again, because if you’re grieving their loss, you’ll be doubting and agonizing over that statement.

You couldn’t be there. You couldn’t have know exactly when that moment of hopelessness would come. We don’t have that kind of control, though we wish we did.

So for those currently in despair…this is your HOPE.

Jesus can save you here just as He does for eternity. I know, because in despair is where I experienced the LIVING God, as close as that next dreaded breath.

Just as any of your loved ones would tell you, you are absolutely welcome to call me, text me, reach out to me, and I will love you as best as I know how. But unlike some others, I’ll tell you honestly that I’m also very aware I’m not enough. At some point I know you will be alone when that despair crawls in and settles so heavy on you that you can’t breathe, a darkness so pervasive, you can’t see clearly the painful destruction you’ll leave behind. When all you can see and feel is agonizing pain.

So, I implore you. Set aside whether you recognize your need for a Savior. Set aside your belief of the existence of heaven and hell. Set aside any past hurts from religion or the church. You need not even share your weakness with anyone else!! But, please, give Him a try. In the privacy of your own home, PRAY. As if your life depends upon it. Because. It. Does. Ask, seek, knock. Storm the gates of heaven with your cries for help. Grab hold of His robe and DO NOT let go until He reveals His face to you. He will not disappoint. You will not regret it. What have you got to lose if I’m wrong?

And what have you to gain if I’m not? Relief? True joy? The assurance that you’re NEVER alone? Fully and truly loved?

Twice Saved

/ bobbiblanchard / 12 Comments

I met her twenty years ago, before either of us had met Jesus. Back then she sat in her recliner opposite the matching one her husband occupied, wearing what I would come to recognize as her typical uniform of worn out flannel and faded sweatpants. Hair cropped short and not a stitch of artificial color on it, or her face, she sported twenty year old glasses and a deep, rough, smokers laugh as she told stories of hunting and “mudding” and cleaning fish with her bare teeth. Okay, I made up the last part about her teeth, but she definitely cleaned her own fish, along with anyone else’s. She was “butch” before being butch was cool. She fascinated and scared me in equal measures…and I was dating her son.

Over the next several years, we’d shop together, eat together, smoke together and laugh together. Turned out she wasn’t as scary as she seemed and neither was her son. I married him and gained her.

She liked to tease that she liked me better than him and that there were no refunds, he was mine for good. But she’d prove over and over again that she loved us both the same. She called me her daughter, and he was still her son. She’ll always be my Mom.

We built our home, and our family, right next door to this lady with the men’s size 10 feet. And those feet would regularly make the trek between the houses for awhile. Three grandkids would soften and delight that rough around the edges lady in ways I hadn’t seen coming. They’d light up her face and dull her colorful vocabulary.

Until those work damaged arms screamed loud for pain meds. And the doctors gave them.

And then gave more.

Until that hard working, hard loving, hard living Mom stayed put in that worn out recliner for years. Barely recognizable, she stopped working, stopped loving and stopped living. Sometimes only awake for a few hours a day.

We thought we lost her for good then. That generous lady that sent diaper coupons to distant nieces and nephews starting their own families, dozens of bottles of baby soap and lotion to the ones that were close, paper plates and napkins for every family get together and cards to everyone for every occasion.

Then, just when we were grieving our own personal tragedy…she met Jesus.

Now, when a person taking enough oxycontin to bring down a horse tells you they’ve been talking to Jesus, you don’t take them too serious like. You start believing that this is about to be another personal tragedy. And you start crying out to your own personal Jesus (the One that tends to speak to you through His Word, in your prayer closet, not in the flesh) for some relief.

That’s when it happened. It turned out her Jesus and our Jesus were the same and He told her to dump out her pain medication, that she didn’t need it anymore. So she did.

Because Jesus can reach you even in a drug induced fog and when He tells you to do something….you do it.

Twenty years of narcotic use fell away like as many chains, gone as quickly as those pills skittered and slid to the bottom of the garbage can. And those doctors that gave them to her? Kept her for three days to witness a miracle by the Great Physician. No withdrawal, no pain. Until they finally said they had no reason to keep her and no medical explanation for what just took place.

Her miracle wasn’t without some consequences though. Twenty years of increased doses did some damage to both brain and body but for the next two years she learned to live and love hard again and we enjoyed every minute of learning to live with, and love her, back.

She played BINGO, returned to competitive shooting, watched middle school orchestra concerts and elementary school programs. She went to movies, the town fair (complete with kiddie rides), filled grandkids full of junk food and ice cream, and even learned how to use a debit card. She laughed, and played, and even though she might not have had the capacity to read and study the Bible, I absolutely believe she knew and trusted Jesus as her Lord and Savior.

In fact, she’d tell you He saved her twice.

Today, my greedy, selfish, heart is a little disappointed it doesn’t appear that He’s going to save her a third.

I’m grieving the pending loss of our Mom and Grammy from this world while trying to remember to be grateful for the gift she was. Trying to thank Him for giving her back to us once, long enough to soak up her silly personality and sweet generosity at a time we desperately needed both.

Praising a loving Savior powerful enough to save us from both the grave, and the chains that bind us here.

Rejoicing in the knowledge that no matter what, we will meet again, in heaven.

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)

Pursuing Love In The Valley

/ bobbiblanchard / Leave a comment

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…..

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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.

 

Hope

/ bobbiblanchard / 4 Comments

I have spent the last three days in a place too closely resembling the dark. I’m sure the details of which will come pouring out in a later blog, but for now, I thought I’d take advantage of the insomnia and a brief moment of clarity while treading water to share a small, yet significant, light bulb moment.

I have discovered, unfortunately, that there is something about pain and loss that makes me incredibly near sighted. Not the kind of near sighted I had fixed by a gifted ophthalmologist a few years ago, but the kind of near sighted that makes it virtually impossible for me to see past my own haze of pain and loss, to the world around me and the kingdom above me. Let me see if I can string enough words together to explain.

There is the kind of pain that explodes into your life with such force that you can’t believe that people within a two mile radius didn’t feel the reverberations. That makes you surprised that everywhere you look, people are just continuing on about life as if the world hasn’t actually slowed to a near stand still. They are going to work, buying groceries, and watching TV as if the searing hot white blast that is still causing your ears to ring and the breath to leave your lungs never happened.

There is the kind of loss that creates such a Huge void in your life that it sucks down with it things like laughter, days of the week, people’s names, prior commitments, and the ability to multi task. You stand at the edge of this vortex desperately trying to keep hold of your sanity with a white knuckled grip on HOPE. And sometimes that pain, it’s sucked down with the loss for awhile too. I believe it’s called “shock”.

But that HOPE I’m gripping? It’s not truly in my hands. It’s in the hands of my Savior. Or rather, at the foot of His cross.

This past Sunday, our message was titled, “Christ Centered Hope”. And I was blessed with the reminder of this message today. I’d like to say that my brain was functioning well enough that I remembered it myself. But alas, this information was in the fuzzy area obscured by pain and lost somewhere in the void. No, when I frantically searched for a piece of paper to write down our latest diagnosis and testing appointments, this conversation guide was closest at hand. Thank you God!

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Colossians 3:1-2New International Version (NIV)

3 Since, then, you have been raised with Christ, set your hearts on things above, where Christ is, seated at the right hand of God. 2 Set your minds on things above, not on earthly things.

So, where is my HOPE? Is it centered on the transient things of this world like finances, relationships, and health? Or is it focused on the HOPE in Christ?

Today, I am struggling to remind myself where I need to place my hope. I am struggling to see further than the pain and loss. Today, I am incredibly near sighted. But I’m also incredibly grateful that He is meeting me where I am and occasionally breaking through that haze to remind me that this is not my home, and my hope is not in my hands, but seated at the right hand of God. And He is with me.

For anyone reading who is struggling through the near sightedness of pain and loss, to see further than the grief:

Psalm 119:114  New International Version (NIV)

114 You are my refuge and my shield;
    I have put my hope in your word.

Isaiah 40:31  New International Version (NIV)

31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

Alibaster Jar

/ bobbiblanchard / 9 Comments

For six weeks I had struggled out of The Dark. Mercifully, I had emerged, battered, exhausted, on the shores of grief. Though waves of despair still licked at my feet, I was no longer immersed in the cold, dark, pain of my loss. My mind, body, and heart, bore the effects of the experience but I had started to sleep, keep food down, and my brain had started to function past survival, past my next breath.

While in The Dark, I had experienced whispers of thoughts that had drug me back under. But, my fatigued, desperate, mind could only focus on my next breath. Now that I had a little breathing room, literally, occasionally these whispers became thoughts and I became aware of a new battle. One being waged within my soul.

I was after putting the kids to bed. Still struggling somewhat with focus and getting to a new “normal”, I was standing once again in the kitchen. When, in a panic, I couldn’t remember if I’d given our daughter her new medication more than once! I knew this meant I would be sleeping once again on the trundle bed in her room awake and worrying all night. I was overwhelmed. This is what it’s going to be like. Medications, appointments, specialists, and worry. I backed up to the refrigerator and slid to the ground. Down to the beautiful hard wood floors Hubby had reclaimed off of an old job site, hauled home, installed, sanded and refinished for me. I sat there in a daze, looking at all of the perfect imperfections in that floor, and I saw it. My heart, shattered into a million, razor sharp pieces scattered throughout my kitchen. The same heart He had so gently and faithfully removed the barriers to, until it was soft, trusting, pliable, and vulnerable. And then He broke it! Silently sobbing on that floor, feeling betrayed, alone, and bone soul weary, I felt as if there should be crime scene tape and maybe a chalk outline of where my heart had been.

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Why?!

He doesn’t love you.

No, He has been with me through it all, helping me through! I’ve seen Him in this! He died for me!

He’s punishing you. For those sins. Punishing her for your sins. It’s your fault.

No! I have been redeemed! He set me free!

You don’t look like you’ve been set free. You look broken. And your daughter looks sick.

He doesn’t love you.…

I grabbed my cell phone to take comfort from my “light” photos. I had quite a collection by now. And I had an event reminder. Come, Abide, Beloved.

Months prior I had been blessed with the opportunity to attend a Retreat through the Women’s Ministry at our church. At the time, worn down in both body and mind, I rejoiced at the thought of time to remove myself from the distractions of home and focus wholly on His word. However, at just six weeks “post diagnosis” I was literally surviving my days moment by moment, hour by hour. And at this particular moment I was sure I couldn’t manage to go. That I just didn’t have it in me. I was so incredibly raw and now keenly aware that I had some major things to work through.

And then He met me where I was. With encouraging texts from friends privy to my private struggle. With a ride from another sister in Christ. With a Hubby that reminded me that they would all be okay without me. And I put one foot in front of the other and decided to go as I was, where I was. I slept fitfully that night after scattered prayers for guidance and energy and courage to do something that even at my best was so very out of my comfort zone.

He met me in the car on the way up, with the generosity of the beautiful woman who came bearing coffee and a necklace inscribed with the word “courage”. I can’t even make this up!

He met me in the conference center with one of my favorite fragrances in the diffuser. Where these women had worked tirelessly to create an atmosphere so womb like and comforting that I couldn’t even be upset that they made me do 30 minutes of “speed dating” to meet the other attendees.

He met me with the most amazing cabin mates who filled my night with genuine laughter (some of my first in a while) until I forgot my discomfort with all the new faces and names, with an unfamiliar bed, with worries about home, medications and the struggle deep inside.

So I rested. In fact, I slept all night. One of only a handful of nights I’d gotten more than a four hour stretch. And I know He was preparing me for the day ahead. The cold sun rise brought with it the glaring clarity that light often brings. And when I stepped into the conference center again and started to worship I knew there was work to be done here today.

My mind was clearer, but my emotions were no less raw, no further from the surface. I cried through beautiful songs of praise and worship, speaking of God’s love for me and His pursuit of my heart. And as our gifted speaker spoke of Luke 7:37-38,
image23she painted a picture with words of a desperate woman, living a sinful life, risking rejection, glares and PAIN, to get to Jesus, and break her most prized possession, an alabaster jar of expensive perfume to anoint Jesus’s feet. She wept openly, wetting his feet with her tears and wiping them with her hair. She came as she was, where she was, with her brokenness and her sin, and weeping, left them at His merciful feet. I could almost see her desperation and pain! But she let nothing stop her. What was stopping me?

With desperation and pain my soul cried out to Him for Truth! Slowly over the last year He had stretched me and helped me to trust. Not just Hubby and the kids, the ones that initially broke the barriers on my heart, but over time a whole community of believers that had helped bring His truth and love and light into my life. And with each layer removed, each anxious step, He had made it good. I trusted Him! But how was I supposed to start all over again and trust Him again? Because this hurt too much. And the temptation to listen to those evil whispers, to return to the “safety” of a hardened heart was at times, at my weakest moments, so very strong! I felt everything but strong.

We broke for our personal devotion time and I went into the crisp autumn air thankful for the cold. Hoping it would numb some of the torment. And I opened my packet and started to work through it. Years of counseling and a remarkable therapist had helped me gain insight into my sins, the motivation behind them, and the detrimental effect they’d had on my life. I had confessed these sins, wept over them for the pain they’d caused me and others, and the barrier they’d placed between me and Christ. So, I fairly flew through half my packet when I was blindsided by number 16.

16. What do you desire more than Christ?

My earthly family. Whole, healthy, and happy. My daughter not sick.

They are my alabaster jar!

We were instructed to take our pieces of alabaster and write on them what we had been holding onto as more precious than Christ, image24then bring them to the cross and lay them at the feet of Jesus.

Could I do it? Could I trust Him with my family? With my heart? To be perfectly honest, I faltered. I sat holding that stone, hot in my hands, mind and heart racing and realized….I was still praying! I was desperate, broken, and looked for Him in everything, every person I came across, every piece of scripture He gave me. And I knew. I knew that I would walk to that house of the Pharisees, past ridicule and shame, and bring Him my most prized possession, my alibaster jar and all of my brokenness. Every sharp, painful, ugly shard. And I did.

Oh, there was so much pain in the offering!!! But as I laid my piece of alibaster at His feet and cried desperate, broken tears, I saw Him pick up those awful broken pieces and knew image11He made them new. That I was nowhere near complete, but He would make it good. I went to the safety of the prayer tent but instead of ridicule and shame was met again with His grace and love through another sister in Christ who once again gave me the words to pray when all I had left were tears.

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The Retreat was part of His plan, His perfect timing. And though I left exhausted, I left with renewed faith and trust in Him. I left strengthened in Him to battle the doubts and fears that still sometimes work their way into my head. Though they surface in my weakness, His strength lights my way and they no longer pull me down, broken, onto my kitchen floor.

I keep a piece of that alibaster jar amidst the chaos of my purse, my life, to continually remind me who I’d given it to.

DSC_0166~3.jpgMy alibaster jar

 

 

From the other side of the podium, the same side of the cross, please visit:

Invisible Love, Sisterhood