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.

The Other Mothers

This mother’s day is a bit different than the past four. In a good way. Or a mostly good way. It started a few days ago when Oldest Son and Baby Girl had their latest appointment in neurology.

Neurology hasn’t been my favorite. This place of MRI’s, EEG’s, spinal taps, bloodwork and few answers but more questions makes my heart race nervous in the parking ramp. That day though, kids touched noses, hopped on one foot and images stayed the SAME. This momma breathed deep, exhaled grateful and smiled to her eyes for holding steady. Steady hands, steady legs and steady labs. This momma stayed up late overflowing grateful. And guilty. Heart rejoicing and heart weeping. Oh, she sang praises on the floor of her closet, wrapped warm in undeserved grace. Then prayed hard for the other mothers.

All of this mothering is hard. SO hard. But there is some mothering that hurts more than others.

The kind of mothering that happens when you lose a child to mother. I saw that this week. Prayed for that momma and hurt for that momma as she stood in front of a school she no longer had a child at. What does one do when you have a lifetime of love for that child and the lifetime is far too short?

The kind of mothering that happens when a child goes their own dangerous way. Prayed for one of those beautiful mommas this week too as she watches and prays and waits. Waits for that child’s saving, fully aware that she can’t be the one to do it.

The kind of mothering that happens when one does all the things to be a mother, but hasn’t been given the gift of the child. I prayed for one of these precious ladies too. For she has helped mother my own babies. Will continue to pray that she understands the beauty of mothering whatever children God gives you, no matter what that looks like.

And finally, the kind of mothering that happens with a special needs child. These other mothers weighed heavy on my heart this week. Because not all of them get to hear good, steady, news.

These other mothers stare fiercely brave into the hardest things. Things they won’t tell you. But I will. So you can pray for them too.

Their sleepless nights last far longer than those infant years. These warrior mothers navigate hospital halls, insurance denials, government paperwork and medical equipment. Always advocating, always fighting. They have grieved a diagnosis, mourned a prognosis. And if it’s a degenerative condition, they’ll grieve the loss of each ability, one by one, over and over again. And at the end of their hard days, their want to give up days, they might break a little knowing the only break they’ll get is when their heart breaks.

Or, they don’t have a diagnosis at all. Oh, I’m hurting for these other mothers too this week. You see, our diagnosis is CTX. And after years of research, I know about all the mommas before me that knew something was wrong. That did all the things to find the answers. And lost their babies before they found out what they were. I also know that there are likely hundreds of mommas out there right now, praying for this diagnosis and might not get it in time.

You see, I know I’m the momma that’s had a few hard years. But I’m also the one that gets the diagnosis, the treatment, the good doctors and the steady news.

So this Mother’s Day, I’m rejoicing and grateful for good news. And I’m praying for all the other mothers. That they know The Good News. That they find their rest in the only One who can give it to them. And that they know that there are mommas praying for the comfort and strength they need to persevere.

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,

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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.

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Freedom

In the United States we celebrate the anniversary of our freedom from British rule on July 4th. This celebration typically includes things like cookouts, barbecues, potato salad, pie and fireworks.

In the upper Midwest, participating in the requisite fireworks usually requires a bath in deet or running the risk of being carried away by hummingbird sized mosquitos. Having two kiddos with neurological issues, we try to avoid the deet bath. Instead, we have been taking the kids to our local dirt race track for their “Fireworks Spectacular” event. Where, either the noise, diesel fumes, or dirt, deters the pesky bugs and the kids also get to watch the races. fireworks5

We load the van with blankets, clear protective glasses, sweatshirts, sunscreen, ear protection for five, and more money than I want to part with. Once everyone has used the bathroom one last time we make it out the driveway with only three trips back in for forgotten items. As usual, we arrive about an hour before the races start which is not early enough to avoid sitting just downwind of turn four, but just early enough to stuff some food into the kids before the race starts and it’s filled with dirt. This year, the toddler complies with the ear protection requirement, which means all five of us are able to watch the races and make it to the fireworks portion for the first time since Mini Hubby was born.

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Well past Mini Hubby’s bedtime, he’s curled up on my lap, waiting for the promised fireworks. My chin resting on the top of his little blonde head I can smell the unique “Speedway Smell” of diesel fumes, exhaust, dirt and burnt rubber with the underlying earthy smell of toddler, i.e. sweat, sunscreen, more dirt, popcorn, pickles and something sticky which I’m bound to be covered in as well. Preteen has let his “I’m too old to be excited” mask slip and is trying in vain to find popcorn at the bottom of the bag that isn’t too gritty to eat. Baby Girl has moved past tired into overdrive, squirming on the unrelenting (even with blankets for padding) aluminum bench, and grinning from ear to ear and has only asked “How much longer” approximately eight times in the last fifteen minutes.

As the first firework is lit, shoots out of it’s tube and covers the sky in bright, loud, red, white and blue, three expectant faces follow it’s trajectory and smile. Eyes bright, mirrors of the cascading light. I smile. Watching joy spread across their faces and fill my heart. In between the repercussions and the patriotic music being piped tin through speakers, I hear it.

Soft and sweet.

Do you feel it? No fear.


Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.


Lamentations 3:57
You came near when I called you, and you said, “Do not fear.”


Just joy.

There had been no fear all night. No stray fears about crashes and random parts flying into the crowd to sneak in and steal the joy of watching my family pick their “winning cars” for the next race.

No stray fears about someone stealing one of the kids to sneak in and steal the joy of watching Mini Hubby play in the dirt by the fence five feet away between races.

And now, no stray fears about tipped over fireworks or big explosions to sneak in and steal the joy of watching precious upturned, dirt filled, excited faces.

I’ve lived a life afraid. Afraid of bridges, wall mounted speakers in movie theaters, car accidents, kidnappings, wrong decisions, mistakes, and fireworks. Over the last few years I’m slowly learning to live a life of hope, in Jesus. To be brave and courageous. To walk this journey with perseverance and endurance. With Him. Until this blindingly beautiful gift of a moment I don’t think I’d really realized just how much work He’s done in my heart. I can get caught up in the mess of who I am, the frustration of fighting the desires of my flesh, and just how far from complete I am and forget that I am a work in progress. And that He’s been working all along. feartofreedom

I look up into crackling flashes across the sky, slightly blurred from grateful tears and celebrate true freedom. Freedom from fear. Freedom in Christ.


2 Corinthians 3:16-18

16 But whenever anyone turns to the Lord, the veil is taken away. 17 Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom. 18 And we all, who with unveiled faces contemplate[a] the Lord’s glory, are being transformed into his image with ever-increasing glory, which comes from the Lord, who is the Spirit.


 

Rest

This last month I’ve been tired. That kind of body, mind, weary that drags at your heart and your soul until your eyelids want to follow. Sometimes at about nine in the morning. It seems no amount of sleep helps. Every morning I wake up and it’s still there. Dragging eyelids down creating fuzzy edges and slowing what seems like my every move. Unfortunately, the world keeps moving at a break neck pace and I’m left with the feeling that I’m never fast enough. Never getting enough done. Never ENOUGH.

I pray for more strength. For more endurance to run this race. For more patience. For more of me to go around. Enough for a family of five. For enough of me.

A dear soul, a sister in Christ, a friend, pointed out to me that I have indeed, been running a race. For two years. With every new symptom, test, appointment, and endless mountain to climb I’ve been running to find an explanation, a diagnosis, a way to make it through the latest roadblock and hold onto Jesus.

I know that our brand of suffering is very rare, but suffering in itself is universal. I know that I’m not the only one surrounded by it in this fallen world. I have only to check my text messages, social media or catch a tidbit of the news for my heart to be further weighted down by the heaviness of broken hearts and broken lives of everyone around me. Aren’t you TIRED?

Does it feel like it’s just too much and we’re just not ENOUGH?

Yesterday I hit the wall. Not literally, but figuratively. Test results came back for our oldest son and he has not responded to treatment. In my beloved kitchen, staring at his results I got a return phone call from the ophthalmologist to make an appointment to check his vision again for signs of damage from the CTX because he’s having vision problems. My toddler is screaming because I cut his strawberries and he wanted them “big”, and our daughter is asking me for the fourth time that morning what day it is so she can figure out how many days to her play date and we need to be out the door for therapy in ten minutes. The dishwasher is running for the second time today and the twelve year old is panicking over a double booked Saturday and can’t decide what he wants to do more. In a stellar parenting moment, I tell the nine year old with the short term memory impairment, “I just told you five minutes ago it’s Friday!”, tell the toddler, “Fine! Don’t eat them!”, and the anxiety filled twelve year old,”I’ll decide for you and you won’t go to either!”. Holding my head trying to hold in the tears I schedule the appointment with the sympathetic secretary and hang up in time to realize the time I picked means I’d have to miss my Bible study that week. We’re five minutes late leaving, everyone is upset and I look down to see a toddler still in pajamas in need of a diaper change I meant to do when I switched the laundry….a half hour ago.

I’m not enough.

I step outside trying to fill my lungs with air, my soul with peace. As chaos ensues inside, I pray. For MORE of me. Resigned to being late, I stare at a yard filled with scattered toys and discarded shirts from a water fight the night before and I’m blessed with a reminder.

I’m NOT enough. I’ll NEVER be enough. I shouldn’t be praying for more of ME, but more of Him. I will never find rest in myself.

Father, please help me to rest in YOU. I am so very tired and on my own I’ll never be able to run this race with endurance. Help me to make more of YOU, and LESS of me! images (1)

I’ve had it backwards lately. I’ve forgotten that He is enough for me, for my family of five, for every chaotic moment. He alone can redeem every parenting fail, every scheduling mistake, every exhausting day. And with that reminder, I can dry my face, walk back in amidst the chaos, apologize to my children and accept the amazing grace poured out on me every day. I can herd unruly cats into a van in five minutes with a bag of “big” strawberries and answer questions again. I can listen to a perfectly timed song, “Just Breathe”, and remember that I can truly rest, just be, at His feet. Thank you Jesus!


images (3)Matthew 11:28

28 “Come to me, all you who are weary and burdened, and I will give you rest.


Spring

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

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

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

 

Hold on.

Follow Me.

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

Tighten your grip.

Light

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

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

Roots

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

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

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