It is hard to believe that you are already 18. That it has been 18 years since the Lord placed you into our arms and our hearts. It has been the fastest 18 years we have ever experienced, yet also the most beautiful. Because you have been in them. It has always been obvious to us that you have been fearfully and wonderfully made. A beautiful, unique, and precious gift to be treasured. And it is our hope and prayer that you know, and always remember, that we consider you to be one of our greatest blessings.
Someday, we know that the Lord may give you to someone else as their greatest blessing. We know that we may have to forfeit your daily presence and light in our own home. But until that day comes, we want to give you a daily reminder of the love and commitment we have to treasure you for as long as we are given with you. The ring in this box was once a symbol of the love and commitment Dad made to me. A promise ring.
And now it is a promise to you.
We promise to love you as Christ loves the church and keep you until such a time as the Lord provides someone else that will take over that role. We commit to pray for you daily, to provide for you to the best of our ability and to invest in your growth in Christ. For as long as we both shall live.
Baby Girl, you are not only our daughter, you are a daughter of the One True King. Loved, treasured, exalted and esteemed. Remember always that you are a gift to all around you.
Last week we were back in a building at our local university hospital that also houses their genetics department. It turns out the nephrology rooms are identical to the rooms on the genetics floor and it was a similarity I wasn’t prepared for. Over the last ten years we’ve utilized several specialities at this hospital, and three others, but none of them have had quite the same effect on me as this one did. From the moment Baby Girl and I parked in the ramp, to the moment we took the familiar seats in the exam room, my heart rate accelerated along with my memories.
It was ten years ago when they brought a box of Kleenex and a genetics counselor in to explain to us that Baby Girl’s genetic testing had revealed something called Spinocerebellar Ataxia Type 8 (SCA8). The blood roared in my ears while the black started to cloud out my vision and, seemingly, the oxygen in the room while they told us these are the conditions they hate to find. That there was no treatment and no cure. This progressive, degenerative, condition would slowly rob her of her mobility over the course of the next ten years. It would start in her hands and feet and work its way inward until it stole her ability to even breathe and swallow. And as time stood still in that room the next ten years raced behind my eyes and all of a sudden I was the one that couldn’t breathe or swallow.
Over the next couple of months we listened to so many tell us what to expect for Baby Girl in the future that it became almost impossible to live in the day. And when the lights went out at night, and I was alone in the quiet of her room, watching her from her trundle bed, it wasn’t just the specialists that spoke of her future.
The enemy would creep in, prowling like a roaring lion, seeking to devour any peace or hope for the future I’d desperately been trying to cling to.
“Ten years from now…she’ll be graduating…to a wheelchair.”
“Ten years from now…she won’t even be able to say the words, ‘I do’, never mind think about marriage.”
“Ten years from now…you’ll long for the days you could hear her breathe by herself at night, all night.”
And my sleep deprived, under nourished, emotionally spent and spiritually tormented self…wrestled. I wrestled with what “they” said. The specialists, the family members, the friends and the enemy.
Until I finally started to hear what HE said.
Slowly, the words of my Father started to drown out, or at least dull the edges of, the many voices around me.
Romans 5:3-5
3 And not only that, but we also boast in our afflictions, because we know that affliction produces endurance, 4 endurance produces proven character, and proven character produces hope. 5 This hope will not disappoint us, because God’s love has been poured out in our hearts through the Holy Spirit who was given to us.
And slowly, there was a hard fought and heart felt hope in the love of a Father that knew what it was to watch their child suffer and still poured out His love in our hearts.
Romans 8:28
28 And we know that for those who love God all things work together for good,[a] for those who are called according to his purpose.
Slowly, there was certainty that a God who used the ultimate evil act, the murder of His Son, for the Salvation of all who would believe, could somehow use our hard thing for good too.
Jeremiah 29:11
11 For I know the plans I have for you, declares the Lord, plans for peace and not for evil, to give you a future and a hope.
Slowly, I started to believe again that my Lord’s plans for me, and Baby Girl, were good, even if I couldn’t see how.
Today, Baby Girl turns 18. It’s been ten years. And, by the grace of God, nothing “they” said, none of the things “they” whispered to my tortured mind, have come to fruition. But everything HE said….did!
Baby Girl’s life isn’t what I had imagined for her. It isn’t always what I would choose. She struggles with the ordinary in a way that often breaks my heart. But she walks. She speaks. And she breathes on her own. More importantly, by the extravagant grace of her Heavenly Father, she does all of those to His glory.
But here’s the thing, I still find that when I’m struggling the most, the root problem is often the same. I am still listening to what “they” say, rather than what He says. The world has a way of lying so convincingly, so subtly, that I’m still often tempted to believe it. But I’m so incredibly grateful that I have a Savior that is absolutely committed to helping me hear HIM above the noise of my own fear and doubt.
John 10:27
27 My sheep hear my voice, and I know them, and they follow me.
And He says, that Baby Girl is fearfully and wonderfully made and His plans for her are GOOD.
This week Hubby was working out of town and there’s something about him being gone that turns our home upside down. Not a full day out the door and the dog runs through it and decides on a lengthy jaunt through the fields nearby. The kids aren’t any better, though they save their rebellion for indoors where it’s warm and there are snacks and WiFi. It reminds me, every time, of God’s design for parenting…it should never be three against one. By day three, Baby Girl had earned extra chores, Mini Hubby had earned a couple of electronics free days and I had earned…the privilege of cleaning up the latest pile of cat puke. Because in my rushed shopping, I’d ordered him the wrong food.
Needless to say, by cookie baking day, I wasn’t particularly feeling the “holiday cheer”. In an effort to remind myself why this is the greatest time of the year, blah blah blah, I turned on the album from the concert we had gone to the week before. Oh, how quickly my heart and mind forget!! There is no doubt at all that I am what the Old Testament described as stiff necked and hard hearted.
While at the Rend Collective concert the week before, they played my favorite version of Silent Night. Here’s where you think, “Yeah, yeah. We all know Silent Night. We sing it on Christmas Eve and we light the candles and it’s beautiful.” But have you heard this one? It starts as Silent Night and it IS beautiful, and you know the words and somehow that makes it beautiful and comforting all at the same time. But then, they add this:
Be still my heart
Be still my mind
May I still see the magic
Of that Silent Night
Fill me with wonder
Keep mystery alive
May peace on Earth
Be my song tonight
And as I mixed and chilled and rolled and baked, I kept hearing those words blow warm breath into my now chilled heart and revive a memory I didn’t know I had.
A typical New England winter, I remember slogging through the snow. But my feet were wet in their tights and my toes were cold, so we must have been dressed up, though I don’t know for what. What I do remember, is passing by the nativity. There were people clustered tightly around and I couldn’t see the manger until someone shifted and even then, it was the briefest of glimpses. No one explained to me what it was, or why it was there. I know there were live animals, a manger scene and extra lighting but I also know I couldn’t understand why. Why they were there, why it smelled so strongly of hay and animals, why no one was talking, and most of all, why I could sense such a strange mixture of solemn joy and anticipation. It was as if everyone was waiting for something they already knew was coming.
I didn’t know then what it was.
But I do now.
Because they WERE waiting for something they already knew was coming. And I’m STILL waiting for something I know is coming.
And maybe in the waiting, I get a little cold.
Not just my wet tights and pinched toes, but my whole heart and soul.
Because I forget the wonder of that Silent Night.
Because somewhere in the waiting, while I’m doing all the “momming” and the shopping and the baking and the cleaning, I forget the magic and wonder of our Lord and Savior, lowering Himself to take on flesh, in the form of a baby, in a dirty stall, to a poor family, from an obscure town and a persecuted people. I FORGET that heaven came DOWN and was held in a manger!
I always tell the kids we celebrate Christmas and Easter all year through. That the cradle and the cross are so intertwined in the life of a Christian that the distinct days on the calendar are a mere formality. That we must see the perfectly sinless life of Christ, His substitutionary death on the cross, and His resurrection as one amazing, grace-filled plan to restore the sons of Adam to our Holy God. That our daily, celebratory worship is gratitude for our awareness of our need for a Savior.
But maybe, sometimes I’m missing the wonder of being still and zooming in.
Lord, forgive my hardness of heart and the temptation to miss the incredible beauty of that silent night. Soften my heart, help me to be still, and restore my wonder at Your first coming as I wait, too impatiently, for Your second. Amen
I think, in past blogs, we’ve sufficiently established my lack of singing ability and that it seems to be a long inherited familial deficit. As a young Christian, this often kept me from participating too vocally in corporate worship. As I grew in faith, so did my volume. Mind you, I’m still sensitive to the ears of my faith family around me, but I now recognize that in worship, I’m singing for an audience of One. And, well, He IS responsible for the voice He gave me….
But, since I’m not musically gifted, I will admit that much of my worship is done differently. In my time in the Word, in service, and in prayer. Oftentimes, in words on paper. So today I’ll combine them all.
I learned something differently this week so I’ll share it all with you, and then thank you.
I sat in the back of the sanctuary. It’s been my habit in years past to sit in the front so I’m less distracted by the people around me. So I can focus more fully on the message. Though I don’t have ADD or ADHD, I have found, in my love for all of you, I tend to look for you. To look to see how you’re doing; if you’re okay, and if you’re present. I especially love watching your kids. There’s just something about a little one with their family on a Sunday morning listening to the Word of God that makes me go all soft and fuzzy inside.
But I digress. This Sunday, I sat in the back. And it wasn’t just a mental attendance and temperature of the room I was taking. I think it’s the first time I’ve watched everyone sing in worship. And now I’m a little jealous (for probably the first and last time) of our worship team. Because it is a beautiful thing to see a church packed full of brothers and sisters praising our Lord. Want to know what’s even better? Hearing a church full of brothers and sisters praising our Lord! For a first service gathering, everyone was surprisingly awake this Sunday. And it was absolutely breathtaking!
Our pastor must have felt it too. Yes, I know how much time goes into sermon prep. But I like to think that the Spirit went before this sermon prep and then prepped the hearts and voices gathered on Sunday so that our pastor could speak accurately and passionately about the worship we’d just experienced. Referencing Colossians 3:16 he said:
Our first audience when we sing is God Himself. We perform for an audience of One. But there is another function to our worship. We’re ministering to one another. We’re teaching and admonishing one another. So when you sing…’it is well with my soul’, you’re singing for the woman that just received that cancer diagnosis…and what you’re telling her in that moment is, ‘Christ has not forgotten you. He has you. There is a firm foundation underneath your feet’. You’re singing for the man that just received the papers of divorce from his wife of fifteen years…and you’re saying, ‘no matter where you’re at, He will walk with you. This is not the end. There is hope in Jesus.’ – Patrick Mostek
Colossians 3:16 16 Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God.
And then I thought of all the times you’ve sung to me. For me.
All of the times my mouth formed the words, but my heart was far behind. All of the times I knew it to be true, but needed to hear it from you.
The time I’d been the one to receive the diagnosis, but for Baby Girl. When I wept ugly tears and not a small amount of snot on your shirt. When you sang:
“Your love is, like radiant diamonds Bursting inside us, we cannot contain Your love will, surely come find us Like blazing wild fires, singing Your name
God of mercy, sweet love of mine I have surrendered, to Your design May this offering, stretch across the skies And these Hallelujahs, be multiplied”
And as I struggled, through sleepless, hurting, desperate tears, to even sing the words, you sang them for God and to me.
Because at that moment, His love did not feel like radiant diamonds. I couldn’t feel it at all. But you told me it was true.
You told me His love would come find me. And I wasn’t sure it would. Worse, I wasn’t sure I wanted it to.
Because at that moment, His love didn’t feel merciful. At all. But you told me, reminded me, that He is. And hugged me, through the song and your own tears, knowing it didn’t seem merciful at the time.
And at that moment, I couldn’t surrender to His design. But I looked around, and saw you, with the afflicted child, who also had every logical reason to feel the same. But who had repeatedly shown me not only that it was possible, but modeled how it was done. And if you could do it, I thought, just maybe, I could do it too.
It would be weeks yet before I felt anything like radiant diamonds. It would be weeks before I, like Job, was certain I even wanted Him to find me. And even more weeks before I could sing a heartfelt hallelujah.
And it would be years before I could hear this song again without feeling the angst that had come with it. But He who is love and mercy has brought such healing to my heart, has enabled me to sing along with you again as we sing, our hallelujahs multiplied.
So, thank you for singing. And please, continue to sing to me. Because as you sing for our audience of One, you bless me and others around you.
Lord, let me never underestimate the ways you work in corporate worship. Let me never take the incredible gift of gathering for granted. Please, continue to use me to teach, admonish, and minister to those you place around me. In spite of my lack of musical ability. For Your glory, and our good.
Eight years ago, after voting, I made a Facebook post saying I couldn’t believe I’d voted for the person I just voted for. My feelings haven’t changed. Tongue in cheek, I giggled to myself while posting this meme.
But, like many Christians, I felt a sense of relief when the results of the election were announced. Not because I was thrilled with the person, but because I felt that person was less of a threat to my desire to lead a godly life. Less of a threat to the sanctity of ALL life. Less of a threat to me. That’s when I realized there was a whole half of our country that was feeling the opposite. The fear and subsequent anger is, for them, a very real feeling. They’re feeling a threat to the way they want to live their lives. And that’s a feeling, I’m certain, we should have compassion on as we increasingly feel it ourselves.
What if that fear gives us an opportunity to love them as ourselves? What if, the great, undeserved, mercy we received in this election comes with great responsibility?
I’m just old enough to remember a time when the church had not yet been replaced by government programs and giant corporations. Programs that our fellow Americans now rely heavily on. I can remember when the nuns ran the hospitals, nursed the sick, and put people over profits. I can remember when church doors were open 24/7 and people knew they’d receive a hot meal and clean clothes, a listening ear and prayer. I can remember when neighbors anonymously dropped boxes of food, diapers or winter clothes to families they knew needed it and freely gave of their time and talents to help them with things they couldn’t afford a professional for. I remember when families cared for their children and elderly sacrificially. I remember, when the church had the opportunity to function as the church was intended to function.
Within approximately ten minutes of the “good news for me” of the election results, I’d been convicted. What was I going to DO with this great mercy?
What was I going to do with my freedom to worship, follow and serve my Lord? Would my service extend beyond Sundays? Would it extend to my fearful and angry neighbors? Would it extend to embracing, not their sin, but them?
What was I going to do with that anticipated “extra” after putting gas in my tank and groceries in my cart? Would it go into my vacation fund, those new brand name shoes, or the bigger house? Would my extended budget, extend to my neighbors that will likely have less in their budget?
What was I going to do with the undeserved mercy my Lord had just given me? Would I accept it as a gift and hoard it to myself, or would I extend that gift to my neighbors and show them the abundant love and provision of the Lord I claim to follow?
Then, I got a little excited. What if…..
The Lord hadn’t just given me the freedom to freely seek after and follow Him, but the freedom to show my neighbors the God I’m fighting to follow?
2 Corinthians 1:4
who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
What if…
We get to be a part of showing our neighbors what we ourselves have found to be true? That our God provides? Remembering… that they have been deceived into thinking the government is their savior.
Our generation has been successfully indoctrinated to believe that our help comes, not from the Lord, but from the many programs that provide for them.
And those programs have not worked for their good. They have placed their feelings above truth. They have encouraged and replicated the sin that keeps them in their suffering. They have taught them that there is no single source of truth and left them to anxiously and despairingly define their own. In their misguided attempt to care for and love our neighbors by placating and affirming them, they’ve done them incredible harm. After all, how could a program love them well when it’s separated from the source of all Love?
By the grace and mercy of God, we are not separated. As I enjoy the freedom to openly abide in the source of all love and comfort, I’m praying for the opportunities that will hopefully come to love the lost, the fatherless, the widows, the orphans, and the afflicted. And show them what the church was meant to do, share Truth and reflect Christ.
Matthew 22:36-39 36 “Teacher, which is the great commandment in the Law?” 37 And he said to him, “You shall love the Lord your God with all your heart and with all your soul and with all your mind. 38 This is the great and first commandment. 39 And a second is like it: You shall love your neighbor as yourself.
What if America looked more like Zion than Babylon?
John 13:35 35 By this everyone will know that you are my disciples, if you love one another.”
The road to Calvary is paved with saints. And once every year or two I have the great privilege of traveling on it, with them, at a junction that is somehow, in God’s upside down Kingdom, as beautiful as it is difficult. And when I tell you where it is, you will have a hard time understanding how it could possibly be beautiful. And then I’ll do my best (and fail miserably) to explain via the English language something that defies my natural, earthly, understanding. But first, I think John Piper does a beautiful job explaining the merits of the Calvary road:
What a tragic waste when people turn away from the Calvary road of love and suffering. All the riches of the glory of God in Christ are on that road. All the sweetest fellowship with Jesus is there. All the treasures of assurance. All the ecstasies of joy. All the clearer sightings of eternity. All the noblest camaraderie. All the humblest affections. All the most tender acts of forgiving kindness. All the deepest discoveries of God’s Word. All the most earnest prayers. They are all on the Calvary road where Jesus walks with his people. Take up your cross and follow Jesus. On this road, and this road alone, life is Christ and death is gain. Life on every other road is wasted.
Matthew 16:24 24 Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me.
Philippians 1:21 21 For to me to live is Christ, and to die is gain.
We travel on the road to Calvary via Leukodystrophy. A miss arranging of variants on strands of DNA we’ll never see, but daily feel the effects of. The approval of that miss arranging is the stuff of other posts and something I tackle one day and one fear at a time. But here, I’m seeing with eyes of reluctant acceptance through supernatural mercy and grace to the beauty of this broken road to Christ.
We step into the valley just a little afraid. It’s an actual valley in some of God’s most beautiful creation, but it’s the people in this valley (both physical and spiritual), that give me pause every year. We know we’ll see and hear and draw alongside suffering children and grieving parents whose cries echo off the walls of the valley of the shadow of death. We know we need not fear evil there. We know we need not fear death. Yet, the road through the valley is a difficult one and it is somehow more difficult not to fear the difficulty.
There are saints in the deepest depths of despair. There are always the newly diagnosed and my heart aches for them as I hear distant echoes of my own cries of, “Lord, I don’t want to. I can’t.” and, “Why?” and my own selfish heart wants to turn away so that I don’t have to re-remember those feelings but, my Lord says to weep with those who weep. There are always those anticipating grief while simultaneously trying to treasure every fading ability and earthly moment. And then those treading water in the depths of John Bunyan’s river, that last enemy of all Pilgrims, death, unable to follow their children across. And the pain in their eyes will take your breath away and make your eyes so puffy you struggle to see the good things.
But God.
Right in the middle of this valley, at a ski resort in upstate New York, through the gift of another family’s road to Calvary with a little boy named Hunter and the subsequent means of grace, Hunter’s Hope, we also get to see all the riches of the glory of God. And that few days is less like a breath of fresh air and more like breathing real air.
If the road to Calvary is where the sweetest fellowship with Jesus is, it is because it is where we seek Him most. Where we most fully relate to His suffering. And in this valley, there are people living daily in His presence. Out of necessity sometimes and out of gratitude at others; where else would they go? And like Moses returning from the mountain top, you can see it reflected on their faces.
The road to Calvary is where you learn to delight in the treasures of God’s assurances. This valley is full of people clinging to the promises of God’s presence, faithfulness, and provision. Not just for their sustenance here, but for eternity. Their hope is so firmly placed on the cross and the blood soaked sacrifice of Christ, that there is no room to hope in other things. The promise of eternity for the children of God, and their confidence in that promise, has blurred the line between the here and now and the forever and they spend their earthly lives living and loving in light of it. And they speak of it as confidently as the rest of the world speaks of tomorrow. This is the clearer sightings of eternity that Piper refers to. Their gazes are fixed on it.
“And that few days is less like a breath of fresh air and more like breathing real air.”
The camaraderie though is probably the most beautiful and life giving thing in this valley though. And I don’t say that just because I can relate to them. In this gathering of saints on the road to Calvary, gone is the frivolous and foolish. There isn’t a mention of the things of Vanity Fair. Conversations are devoid of small talk and full of big talk. The deepest talk. Words are all filtered through the Truth, and all meant to lift up, encourage, support, and point to the originator of every means of grace. And this results in the humblest of affections and the most tender acts of love and forgiveness.
This year, we saw so much of this culminate in the siblings of affected children. The way they loved and cared for each other’s siblings. The way they served each other, included each other and supported each other was nothing short of Christ likeness. Gone were the trappings of American teenagers. (I mean, as gone as they can be in a bunch of sinners, living in America.) Instead, they pushed wheel chairs, operated machines, assisted littles, spoke to those who couldn’t respond, celebrated each other’s talents and efforts (no matter how small or big they were), included the invisible, and prayed. They lead with humility and true affection and it was a beautiful reflection of what they see their brave parents and siblings do every day, as they too, endeavor to reflect Jesus on the Calvary road.
I can honestly say I’ve learned more of the character of God from these children than from any learned, able bodied adult I’ve ever met. Again, an upside down Kingdom, in our eyes. But it’s true. Some have never uttered a word in their lives, yet speak the Word of God more eloquently and boldly and loudly than anyone I’ve heard with my ears. Because their very lives speak of God’s limitless ability to redeem. To take what seems wholly bad, and use it for His glory and somehow for our good. Their lives reveal His unmatched power. Through them, He moves the mountains of politicians, laws, and hearts of the unsaved without them lifting a finger. And through the self denying care of them, He shows the world what love truly is. And for those with eyes to see, it drives them to dive deeper into His Word to understand something so contrary to the wisdom and foolishness of the world.
Then there are the prayers!! Gone are the prayers for good test scores, a great free throw, a higher paying job, a better boss, or kids that will listen and reveal our superior parenting. Not that our Father doesn’t know we want those things, even when we don’t ask. 😉 But the prayers of saints on the Calvary road are saturated with earnest pleading for more of Jesus. More of His presence. More of His peace. The grace to reflect Him to a watching world. There is a groaning and aching for Him that is other worldly, yet a confidence that they will have Him!
Even in the midst of a valley in which they can’t always see Him.
I think this quote of Spurgeon sums it up nicely.
Now, don’t hear me say that all of these saints do this Calvary road perfectly. None of us do. Like any other place, we say the wrong things. We get angry with God. We get real and with that, real sinful. We fail at hurdles and shy away from the hard things. But there is a uniting focus that drowns out the everyday of the small and unimportant and molds and shapes every thought to the big and eternal.
When I was little, my dad bought a full dining room suite of furniture brand new. Solid oak, I can still remember the smell when it was first delivered to our apartment in Massachusetts. Consisting of a table, chairs, and hutch, I now wonder as an adult how exactly they managed to get it up the stairs! I think we had the table a full week before my little sister stabbed her fork into it in a fit of Italian temper and a cover for the top was ordered that would remain in place the rest of my childhood. But the hutch! That’s where the treasures are, right?
Having fallen out of fashion somewhat, perhaps this will not be as relatable to a younger generation so I’ll elaborate. The hutch, or the china cabinet if you’d like, is where all the THINGS were stored. Newly married, Hubby and I bought our first (and turns out only, because who wants to spend money on furniture?!) dining room set. We have since parted ways with our bulky hutch, but I remember loving to have somewhere to display the beautiful, impractical, matching china and somewhere to hide all of the less aesthetically pleasing, practical, pieces.
Yes, I’m going somewhere beyond memory lane here, hold tight. I also remember having a discussion once about the top shelf things in life; the things we strive for and display for all the world to see. And that conversation came flooding back to me this Sunday as I wrestled with some things. Hubby has a new job, with new days and new hours that are making family time a challenge. So in order to carve out more time, we met him at the Mall of America after work on Saturday. It’s been many years since we’ve dined and shopped at that mall and I truly wasn’t prepared for it to be an emotional experience. It’s a mall.
But as we walked out of the parking ramp and into the walkway, the changes in our life started to manifest in tangible ways. Starting with Baby Girl’s service dog. Who I realized had yet to experience an escalator. This was a fun experiment which started with carrying a thirty pound dog up the escalator and ended with waiting for a lull in foot traffic to give her a chance to examine the frightening contraption in her own time before putting her paws at risk a second time. I think we made it almost to the restaurant before I realized that Baby Girl was struggling. I knew this would be a challenge for her. Most don’t know that she had been unable to leave the house without a panic attack for almost the last two years. The dog has been a gift, and one I didn’t know we needed, until it was the thing that would set her free of home. But this was a lot of lights, a lot of sound, a lot of…. people. And it became evident pretty fast that we had pushed the envelope a little too far. We got through dinner, with the help of some medication, and did what we’ve come to do. Persevere. Make the most. Adapt. Find the good. And when we exited the restaurant, we were inundated with “good”. Have you ever taken a moment to appreciate the sheer vastness of THINGS in a mall? It doesn’t have to be the Mall of America to realize this is where all the top shelf things are. And this is where we used to get our things! I remember bringing the kids when they were little and finding the shoes with the swoosh to adorn our pride and the store with every imaginable accessory to cover and distract from any perceived imperfection, the favorite store with the actual sizes of their tiny clothes in the name to feed my vanity and the kiosks with the latest and greatest of “needed” electronics that would promise to fulfill and distract us for seconds…. all the beautiful, shiny, new, “quality”, top shelf things. And I’d like to say that I no longer found them beautiful. I’d like to say that the desire to obtain them and display them was completely gone. Burned like dross in the fire of affliction and refined to holiness that is no longer attracted to, or deceived by, excess. But alas, my flesh still wanted to reach for a few of the top shelf things.
Baby Girl, now medicated and at least able to walk with us, had no desire to enter a store. With her sensory problems, she had no desire for fun clothes or shoes. The mother/daughter shopping I had once so looked forward to will never happen. And it hurt. Oldest Son, not walking with the Lord, but at least walking with his father, was there too. And Mini Hubby brought up the rear. Literally. Often overlooked in the rest of the drama, my stellar parenting was revealed when he tried on shoes to discover the ones he’d been wearing were two and a half sizes too small. And that hurt too.
The mall closed and we left and I was happy to leave. I’d had enough of out of reach top shelf things.
Sunday was another story. Or perhaps, another shelf.
Because, praise God, our lives do not consist of top shelf things. Or at least they shouldn’t. And that was the reminder it turns out I needed.
Because the bottom shelf things are the useful things. The things hidden behind the cabinet doors are the ones we use and need the most. In our actual hutches, they’re the colanders and small appliances and hand me down kitchen tools or the big puke bowls. The things we don’t display but would miss far more than the matching gravy boat, creamer and butter dish brought out for holidays. The things that make and shape and daily form the ordinary and necessary parts of our lives. The essentials.
Sunday morning found me rummaging in that cabinet. And Pastor Mike shone a light in a back corner. Leukodystrophy is always the elephant in that cabinet of ours. The biggest, bulkiest, ugliest tool. The one we never seem able to put away for long because it’s used the most to do all that refining and shaping and molding us into Christ likeness. But back behind it in the cabinet was fear. It’s not there because it’s used less, but back there because I want it the least. It’s a pain to use. Literally. It’s ugly and heavy and I’d honestly prefer to toss it. In fact, my second greatest desire in heaven (after finally coming face to face with Jesus) is being parted with fear.
But Sunday I sat with Baby Girl’s hand in mine while her little body shook and big, fat, tears ran down both of our faces and Pastor shed light on the fear and we both picked it up and let it do its work. Because, according to him, it’s a useful thing. “Fear is an invitation…to demonstrate who I am and where I am with God. And where my trust really lies.”
And when I pulled that fear out I took a closer look. I’m afraid I’m not enough. Because I know I’m not enough. I can’t make Baby Girl comfortable. I can’t make her independent. I can’t make her life what I wanted it to be. I can’t save Oldest Son. I can’t undo damage done. I can’t even keep track of shoe sizes for the easy one. I fear falling short. I know all of us fall short of the glory of God, but I fear falling short of the finish line. Not running the race well. Not ever hearing those blessed words, “Well done, good and faithful servant”.
So where does the fear demonstrate I am? In utter and total dependence on my God. The kind of dependence that keeps me on my knees, far out of reach of the top shelf things. The kind of dependence that means I need Him not just for my daily bread, my sustenance, but for every breath I breathe. The kind of dependence that means I’m painfully and blessedly aware that I can’t finish well without Him. The kind of dependence that absolutely requires that I think about and praise Him, moment by moment, for the ways He has blessed us in and through the bottom shelf things.
And so I discovered, the hidden treasure, buried in the back on the bottom shelf, is a very useful tool…. this ugly fear.
Then, Baby Girl and I held hands and cried and prayed some more and I looked up…to find a different kind of hidden treasure. And with that, a sweet reminder to put the fear away once it’s done its work, thank God for His countless blessings and sustaining grace…and laugh.
Honestly, hidden treasure is often the last place one would expect…
A few years ago Hubby and I sat in a university hospital waiting for two of our children to go into back to back surgeries. We took turns swapping in and out of their pre-op rooms, while joking with staff that we applied for a BOGO surgery discount but administration wouldn’t go for it. These were the first of six procedures they’d need on their eyes and it was a new area of health challenges for them.
I still remember sitting in that cold, uncomfortable waiting room for hours just watching the patient ID’s on the TV screen as each child transitioned from room to room. I also remember regretting not following my own advice that morning. Number one rule of waiting room procedures is: no caffeine. First, caffeine and anxiety do not mix. Second, caffeine is a diuretic. So, my hands were shaking, my heart was hammering and my bladder was about to explode. And there is no good time to make a bathroom run when you’re waiting to see how your children are doing. Bodily functions must wait.
So, I decided on distraction. Perhaps a little Isaiah was in order. It’s often my go to when I’m anxious. I opened to Isaiah 6:8
“Then I heard the voice of the Lord asking:
Who should I send?
Who will go for us?
I said:
Here I am. Send me.“
I immediately thought of some of my favorite Christians. Both in the Bible and out. Sent by God for incredible Kingdom work. How amazing would it be to be sent like George Mueller; watching the Lord provide for thousands of orphans on a daily basis?! Or, what about Charles Spurgeon? Or C.S. Lewis or….
Then all of a sudden two familiar patient ID’s turned green and were transferred to post op. I grabbed my Bible, my cold coffee and Hubby and we each picked a post operative room. I got the child that likes to wake up slow. So while I listened to the automatic blood pressure machine and the beeping of the heart rate monitor I glanced back to my reading. And Spurgeon’s commentary on it.
“God is seeking a messenger to deliver his message to people. Isaiah did not know the errand; perhaps if he had known it he would not have been so ready to go. Who can tell? But God’s servants are ready for anything, ready for everything, when once the glowing coal has touched their lips.”
And then he describes the glowing coal as this:
“It represents purgation, cleansing, participation in the sacrifice and the putting away of sin. With a blister on his lips, Isaiah sat silent before God.”
My patient started to stir so her nurse did likewise. And as he started to encourage her to take deep breaths and not to rub her eyes I noticed him hesitantly looking at me. And since I also knew from past procedures that this was only the very beginning of her wake up, I struck up a conversation with the hesitant nurse. He mentioned that the staff had been enjoying our family that day. That Hubby and I seemed so content. And he’d noticed my Bible and wondered if I was a Christian. Over the next hour, our troubled young nurse questioned our faith, contentment and obvious playfulness with stressful circumstances. He had access to the kids’ charts, he knew their medical history. He’d seen and served countless families that didn’t respond the way we did. And all I could tell him was that it was by the grace of God. Then we talked about his new bride and their plans for a family and what to look for in a church home. And then it was time to go.
And all I could tell him was that it was by the grace of God.
A few days later I was sitting in yet another waiting room. We’d just found out one of the kids had scar tissue forming and needed an additional procedure so we were waiting on more tests. I was reading an update on a local missionary family and found myself in awe of what God was doing with their ministry. Like Isaiah, I sat in that waiting room, with a blister on my lips, having been purged of sin by the blood of Christ and feeling an awful lot like I’d participated in the sacrifice and wanting to cry out to my Lord:
“Here I am! Send me! Send me to big, far off, places! Let me scream from the rooftops who You are and what You’ve done!”
And as I looked around another crowded waiting room, I saw our young nurse round a corner and skid to a halt in recognition. With a hasty wave and a genuine smile, he said, “I’m so glad to see you guys again!” And wheeled his next patient into an adjoining room. And it almost echoed in my ears….
“I did.”
He did.
He has sent us into the medical world where the wisdom and knowledge of man is highly esteemed while the Truths of God are deemed colloquial at best and foolish at worst. He has sent us to those in the upper echelons of academia, where many simultaneously wonder at our contentment, while scoffing at its source. He has sent us where we sometimes don’t want to be. Out of our comfort zone, into the trials of rare disease. But every once in a while, we get to marvel at where we’ve been sent, because He gives us a tiny glimpse of what He is doing there.
But every once in a while, we get to marvel at where we’ve been sent, because He gives us a tiny glimpse of what He is doing there.
A couple of weeks ago I sat in the back of our church service and looked around at so many of my struggling, faithful, Faith Family and as I prayed for each of their trials I thought…
Beloved, where are you?
The infusion room?
Treatment facility?
Attorney’s office?
Court room?
Food shelf?
Widowhood?
Singleness?
Childlessness?
Single parenthood?
Perhaps, like Esther, you have been sent there for such a time as this.
I can’t always celebrate the places we’re sent. Sometimes it’s really hard, scary and exhausting. But I CAN celebrate that there are people there. People desperate to hear the message God has sent me with. That during this season of Christmas, we are not only celebrating the fact that God sent His one and only Son to be born in a manger, but that He sent Him to live a life we could not live, perfect and free from sin, to die a death we could not die, taking the punishment for the sin of all who would come to trust in Him for salvation. Then, rising again, He gave us everlasting life…with Him. And we can, and will, celebrate being sent there.
Beloved, wherever you are, can you recognize the hand of the One who sent you? And then, like Isaiah, wait on Him to give you the power and strength to do what He has called you to do?
“To deliver His message to people”, wherever you may be.
Isaiah 40:28-31
28 Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. 29 He gives power to the faint, and to him who has no might he increases strength. 30 Even youths shall faint and be weary, and young men shall fall exhausted; 31 but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.
I stepped outside the other day to let the puppy out and smelled it. As Nessie raced around the yard, nose to the ground, finding the perfect place to pee, I lifted mine and made out the musty smell of flowers in last bloom, decaying plants that have offered up their final harvest, the unique blend of weeds that make their appearance during the second week of August and the hot, final push of summer.
And it made me nauseous.
Instantly, I became aware of the cicadas and their call for fall. And it made my heart race and my palms sweat. The sun hung low and heavy in the sky and I realized…it’s the end. The end of long days, flip flops, warm sweaty kids, dirt between toes, skipped lunches, water clogged ears, sun burns and no schedules. But for me, it’s not just the end of summer.
For as long as I can remember, fall has meant the end. As a little, the end of summer meant the end of a visit with my mom. For another year. At its worst, when I was youngest, it was a traumatic forced removal. At its best, when I was older, an unhealthy reinforcement that fall was to be avoided at all costs.
I made some headway while the kids were little. Some new memories of fall. What’s not to love about a toddler picking a pumpkin or going on a hayride? A kindergartener finding their hero’s costume to wear or learning how to make applesauce and apple pie?
Now, the second week of August has become Baby Girl’s first diagnosis day. Which I was convinced would be the end of me. Or at the very least, the end of my sanity. It was neither. However, it did become the end of life as we knew it. And eight years later the very smell in the air has the power to transport my body to that same day, answering the phone. The nausea, the racing heart, the sweaty palms. Sometimes even the blacking of the corners of my eyes and the roaring in my ears. Not to mention the inability to sleep.
But here’s the thing. I know it’s not the end. Not really. It may have been the end of what we knew, but it was the beginning of something better. Something bigger and richer. Though my body might not have gotten the memo, my heart knows there is great joy. Fall means the beginning of a life I didn’t know existed. Where every day is cherished, both good and bad. Where our very definitions of priority and blessing, faithfulness and love, were turned on their heads. Where there is deep, deep gratitude and preciously simple joy. Where we have found a lifelong dependence on the Lord and the joy of watching Him faithfully provide.
It also now means the beginning of a homeschool year. The beginning of learning both about the world around us, and the God surrounding us and within us…together.
And this year, it marked the beginning of new life for Mini Hubby. An incredible gift of which the timing is not lost on me.
In short, this is a season I haven’t and won’t likely ever choose. I may never run racing for the first pumpkin latte or stock up on the spice candles. I may never decorate for fall and long for hoodies. But, it’s a season my heart is beginning to love as God continues to use it to bind me up and restore that joy within me. And I suspect I’ll have to continue to fight for that as my body catches up with our current circumstances. And, as I was reminded this week, there is still an enemy that would steal my love and gratitude. There is a thief that still, on occasion, sneaks in during the night and tries to rob my peace and silence the profession of my joy to the glory of God.
I’ll keep fighting because though this season continues to be a roller coaster of ends and beginnings for me, I know there is really never an end. Not really. Not for those in Christ. He is all new life and new beginnings for those who put their faith in Him.
Tucked into some trees at the edge of a lake is where I found her. Well, first I found her in the yellow pages. Yes, back when there was an actual paper book and there were no maps, photos of facilities, or reviews to help you make your decision. Nope, my hope was simply that I’d find the “right” place when I really didn’t know What I was looking for.
I can still remember following the instructions for parking and the ramp to the side door. Still smell the warm pine trees, hear the skittering of birds in the trees and tiny critters in the leaves and hear my lone footfalls on the wooden ramp. Still remember my nervousness opening the temperamental door (that needed an extra nudge in the summer and sometimes didn’t close all the way in winter) and finding my way to the waiting room. And sitting on the loveseat, filling out paperwork, getting my first glimpse of Carol.
I would later wonder how someone so small in stature would come to be one of the most powerful humans I know. But at that time, I was comforted by my first impressions. Soft spoken with even softer eyes, I was reasonably certain she was someone I could talk to. You know, just long enough to sort out this anxiety that didn’t make sense.
And over the next few years, she would. Help me sort it, that is. She’d gently walk with me through childhood trauma, help me manage hard parental relationships and start changing generations of unhealthy thoughts and behaviors by teaching me how to parent my own littles and love my husband well. And all the while there was a Song in that room. Most of the time it was a consistent undercurrent, radiating from that small, gentle woman in the rocking chair. But every once in awhile it would peak and reverberate off the walls in a more audible question, or an observation.
Have you ever stopped and prayed when you feel overwhelmed like that?
When I’m thinking about the big questions in life, sometimes I find those answers at church. Have you ever been?
I know when I was a young mom, I really needed relationships with other young moms. It can be isolating spending all your time with young children. Sometimes they’ve got mom groups at the local churches. Have you tried one?
And the Song would tug at my heart and my thoughts until I did go to a church and ask the big questions. And got big answers. And I realized, a carol is a song.
And MY Carol is a Song.
Or rather, possesses and reflects, the Song of Christ. That gentle calm that attracted, comforted, enveloped and walked alongside of me? It was the promised Comforter the whole time. And later, that same Song would be positively fierce in protecting me. Fighting for me. And loving me through some of the darkest, most painful moments of my life. Christ in that tiny woman would make her powerful enough to help lift me bodily out of some of the deepest depths of despair.
I remember reading John 14:16 and believing Jesus when He said that the promised Counselor (or in other translations, Comforter) would be better for me; but sometimes still wondering how it was better for me than if He was still with us bodily and not in Spirit. It was much later when I would realize that it would be through that Counselor, in my counselor, that would testify to the same Spirit within me and bring me comfort that would surpass worldly understanding or expectations. And help me know Jesus in a way I couldn’t have had He not been in me, always.
John 14:16
16 And I will ask the Father, and he will give you another Counselor[a] to be with you forever.17 He is the Spirit of truth. The world is unable to receive him because it doesn’t see him or know him. But you do know him, because he remains with you and will be[b] in you.
And now, the Song is familiar, but no less attractive, no less powerful, and definitely no less comforting. And I still hear it in every conversation with my Carol. The in dwelling Spirit that constantly, sweetly, and faithfully points me to Christ.
Ephesians 3:20
20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us
But here’s the crazy thing. I didn’t ask. I didn’t imagine.
I didn’t even KNOW to ask or imagine. I simply dialed a phone number, found in the antiquated yellow pages.
And God still gave me a carol. Wooed me with a Song. And through that Carol, gave me more than I could have asked for or imagined. He gave me a spiritual mother that has often doubled as a physical mother to not only grow and encourage me and my faith, but helped to grow and nurture the faith of my family. He gave me a safe place to learn to trust, so that I could learn to trust my Father. He gave me someone to laugh with, cry with and always point me to Him. He gave me a treasure I will forever thank Him for. Because through my Carol, His Song, He has not only richly and generously blessed me, but He has fostered a legacy of faith in my family. In Hubby and my not so littles.
I can only pray that one day, I might reflect even a fraction of the Christ I’ve seen in her over the years.
That on occasion, those with me might hear an echo of the Song of Carol. For many years to come.
2 Corinthians 2:15-17
15 For we are the aroma of Christ to God among those who are being saved and among those who are perishing, 16 to one a fragrance from death to death, to the other a fragrance from life to life. Who is sufficient for these things? 17 For we are not, like so many, peddlers of God's word, but as men of sincerity, as commissioned by God, in the sight of God we speak in Christ.
Valleys & Victories 