Do you trust Me?

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.

Baggage

Sometimes I wrestle with the things I’m being asked to carry. And I have, in my head, cheerfully throttled many a person that has attempted to tell me that God only gives us what we can handle. Because that’s an enormous lie from the pit. I have learned that He gives us exactly what we can’t handle on our own. To draw us closer to Him and reveal our great need for Him. A severe mercy. There’s a great book on it.

Anyways, here is an allegory of God disabusing me of the lie of independence. Again.

We’re walking hand in hand through the terminal, His hand warm and strong in mine. This isn’t the first stop on our journey and it won’t be our last. I’m a little jet lagged at times with the speed of our travels and at other times impatiently, anxiously waiting for Him to let me know it’s time to move. Some stops are in far off, isolated locales full of discomfort and trial and I’m eager to leave, while others are familiar places of comfort and peace where I’d like to rest until He calls me home. Alas, my next stop does not appear to be home.

Have you ever noticed the melting pot of the airport? We pass the down trodden, the high rolling, the anxious, the weary and worst, the poised and perfect that have got it all figured out. But where my Lord walks, there follows a wake of peace. The air doesn’t dare stir in His presence without permission. Brushed by grace and mercy, people stop to stare, drawn by His irresistible love, even if they don’t know why. I smile because I do know why, and grab His hand a little tighter. Confident in only one thing. He is mine and I am His.

We approach the carousel and I let go of His hand to search out my baggage. I see it in the far corner, imagining the maze of complicated belts, speeding carts and rough handling the sad little bag has probably been through. I’ll admit my extensive research on this is solely derived from Toy Story 2. As I watch my bag round the first corner I am trying not to covet the ones next to it. You’ve seen them, the hard shiny sides with fancy luggage tags and wheels that rotate and don’t get stuck on the moving walkways. I glance back at Him to see if He saw me longing for the pretty paisley bag and smiled sheepishly because, of course He did. We’ve talked about that before. He knows I don’t like my bag. He gave it to me though so I’ve tried really hard to not complain about it. Because He’s good. So I know there’s a reason He gave the sad, shabby, not chic, bag to me.

I look back just in time to reach out and grab the handle. Which promptly slips out of my grasp and moves out of reach in front of other travelers. Not only is the bag not attractive, it’s heavy. I have carried it around for years and to be honest, the thought of carrying it around forever makes my heart grow heavy and start to race. I suddenly feel far more tired than I was ten minutes ago and there seems to be less air in the room around me. My eyes are glued on the bag now and I’m preparing for it’s next pass. The darn thing is so heavy. This time, I’m going to roll up my sleeves and use both hands. It rounds the curve and I reach out with both hands, give a good tug, and manage to lift it a whole three inches. It bumps up onto the side, spins, and lands back on the belt, now with the handle facing the wrong direction. Okay, now I’m frustrated.

This bag is too heavy, it’s not what I want and now I’m convinced it’s going to be the death of me. I’ve got Someone waiting for me, I’ve got things I want to do and other places I want to be. I want nothing more at this point than to leave it behind and let it be someone else’s problem. But it’s my bag. He gave it to me. I know it’s mine for a reason and He has a plan for me and that particular bag. So I will suck it up, pull myself up by my bootstraps, and get MY bag! I’m formulating a new plan. Leverage. I’ll need leverage. Perhaps a foot on the carousel and I’ll put my back into it! It comes around again and I’m not sure if it’s my imagination, but it definitely appears to be coming faster. I’m thinking of past failures and future attempts; lugging this bag for the rest of my earthly days, and I almost lose my resolve. But, chin up, with a stiff upper lip (whatever that means) I place a foot on the side of the carousel, grab the handle and with a mighty tug, promptly land on my butt. Without the bag.

And now I’m sitting on the floor of the terminal, which has to be tantamount to licking a door handle, and I want to give up. I want to go home. I want to brush the germs off my backside, wipe the tears from my eyes and retreat. That’s when I realize. Twenty whole minutes and I lost my peace. I tear my gaze from the insufferable bag cheerfully careening around the carousel and see Him waiting behind me. He gives me His hand, counts my tears, and says, “Yes, I gave it to you, but you were never meant to carry it alone.”

With a deep breath, I stop watching for the bag and start watching my God. We approach one last time, He leans over and pulls it off the belt and says, “Now, follow me.” I am back where I’m supposed to be, carrying my cross and walking in the wake of His mercy and grace. Moving on to our next stop, wherever that is.

I can’t do this life, and what He has called me to, by myself. All the planning, all the list making, all the hard work, all the pulling up of bootstraps (seriously, does anyone have bootstraps anymore?) just isn’t enough. Yet I try. Over and over. And He lets me. And waits patiently for me to turn around and ask for help.

I see Oldest Son trying to do all the things, by himself. I see Baby Girl wrestling fear like her mama and her baggage. I see Mini Hubby trying to figure out where he leaves off and prayer starts. I see us all believing the lie of SELF sufficiency. So how do I help remind us that we do not carry our burdens alone? This is my idea. A separate slot for Mom & Dad, Oldest Son, Baby Girl and Mini Hubby. My plan is to read through our prayer requests on occasion so we can turn them into praise.

A vintage salesman’s bag off EBay, some hot glue, and my trusty label maker makes a visual to remind us that we don’t carry our baggage alone.
Matthew 11:28-30
28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.

Rock of Ages

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

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

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

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

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

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


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

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


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

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


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

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


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

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

Wherever You call me, Lord.

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

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

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

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

Good Gifts

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

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

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

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

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

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

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

Merry Christmas!!

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

Matthew 7:11

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

Dissection of a servant heart

I’ve always loved to read, though the content has changed significantly over the years. One of my favorite authors is C.S. Lewis and though I return to his books often, I’ve recently found a new love of biographies and auto biographies. My favorites happen to be of some wonderful old saints like George Mueller, Amy Carmichael, and Charles Spurgeon. I read through the lives of these incredible brothers and sisters in Christ and they both encourage and convict me with their faithful perseverance and joyful service to our Lord. If you don’t know them, for the sake of this blog, you need only know that the size and scope of their ministries was only surpassed by their great faith and reliance on their God. Which resulted in great Kingdom impact.

And it never fails when I close the book for the night.

I want to serve like them. I want to minister to orphans. Great multitudes of them (or maybe more realistically, foster children).

To save exploited children and show them the love of their Father.

I want to tell of the Good News to the masses. The underprivileged, forgotten, broken, hurting, starving masses.

I want to do big things in response to the big Love I’ve received.

Don’t misunderstand. I also think that sometimes the big acts of service are the small ones too. I find great joy in loving chatting, giggling, exasperating teenage girls in my youth group, wiping snotty button noses in my Sunday school class, sorting dusty, dirty cast-offs for a rummage sale and even scrubbing toilets and windows in the house of my Lord.

But as I read these biographies I found myself wondering if these beloved saints ever wrestled with where they were called to serve? It seems to me that they didn’t. And it makes me wonder if this is my own peculiar stubbornness.

I sometimes look at our situation with special needs children as an obstacle to service. How am I to do all of the things I want to do when there is a constant stream of paperwork, medical bills and appointments.

If only I didn’t have one fire after another, Lord, the things I could do!!

Then I went to an amazing conference with Hunter’s Hope. An organization that serves families affected by Leukodysytrophy. It was while sitting in on a prayer meeting, fever raging from a kidney infection, that the Lord began to work on my heart.

The chairs were arranged in a circle with Kleenex boxes strategically placed about the small room, as couples made their way in from breakfast. In varying stages of grief, these beautifully brave parents and caregivers shared their deepest, most authentic, genuine, hurts, fears and even heart breaking anger. Then, they collectively placed their burdens in the hands of their Lord, asked for the strength and wisdom to glorify Him throughout the conference, and closed in praise and gratitude for the fellowship and provision given to make the conference possible.

Then, since I was feeling so ill, instead of making connections and asking questions I was forced to just listen and observe. (I tend to do a “doer”, so trust me when I say this was frustrating and decidedly disappointing. NOT what I’d planned.)

What I SAW was HOPE. I saw these same hurting, grieving, struggling servants shining light into what I’ve experienced to be some of the darkest of circumstances.

Because there were many in attendance who were trying to navigate the terminal illnesses and deaths of their young children… without Christ.

I saw these unbelieving families look upon these other, broken parents and wonder at their peace. At their ability to find joy. Wonder at their belief that their God was still good. And it made me wonder…

Did those parents of the prayer meeting realize how well they served their Lord? In and through the pain and daily struggle for peace. It was then I thought of those who God had used to serve me.

A pastor, who having come to Christ at the grave side of his infant daughter and a friend with a daughter with MD would be the only ones I could hear and believe when, in my own grief, I could not believe or hear God. And I suspect these precious families will one day, if they haven’t already, be given the opportunity to serve in a similar way. To be able to say, with confidence, to the similarly afflicted,”He’s still good. And He still loves you.”.

Then, I saw these same hurting parents present all of the amazing ways God has used and purposed their great suffering to ease the hurts and suffering of future Leukodysytrophy families. Dozens of organizations founded, books written, laws enacted, lobbyists created and activists activated to go out and comfort with the comfort they themselves have received.

And then I think, have I truly been willing to serve where He has placed me? In the relentless paperwork, medications, therapies, insurance battles, waiting rooms and fear filled future. EVERY morning when I surrender these children anew, have I surrendered willingly myself to serve where He obviously wants me. And am I doing it as cheerfully and joyfully as I would serving the next project at church?

And the answer is humbling.

Not always.

These last couple of weeks especially I’ve wanted to serve pretty much anywhere but where He has me.

I still want to serve in ways that are more appealing to me. Would still honestly much prefer serving widows and orphans, the homeless and persecuted. Would even cheerfully welcome the opportunity of a great inheritance to pour into God’s kingdom if you twisted my arm.

I’m far more comfortable serving from a place of my own abundance, than a place of my own great need.

Perhaps I do NOT yet have the willing, servant heart I thought I did.

The lumpy, bumpy road…

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.

Sometimes I’m wrong…

Have I ever told you I never planned to be a Stay-At-Home mom? It wasn’t what I thought my family would need. I thought my future family would need things like reliable vehicles, family vacations and savings accounts. It turns out my family would need a mom that could devote hours a week to paperwork, phone calls and appointments for a couple of medically complex kids so they could get a diagnosis in one year, instead of the average fifteen. They would need a mom that could stay home and research, fight for answers and fight insurance companies until she got them. Thank God, He knew I was wrong about the career and making money thing.

I was wrong again when we finally got our first diagnosis and I decided to bring Baby Girl shopping for school clothes. At Justice. We don’t normally shop at places like Justice. Because shopping at Justice falls into the same financial category as family vacations. If you don’t have a tween daughter, just take my word for it. But somewhere in my sleep deprived, grieving mind, spending a ludicrous amount of money on Baby Girl seemed like… justice.

So we walked in the door and I said the craziest thing, “What do you like, Baby Girl?”. Two hours later I had agreed to a pile of clothes that not only exceeded our clothing budget (for the year) but also some hard and fast rules I had on 8 year old modesty.

Then there were “the shoes”. Because of Baby Girl’s deteriorating coordination, footwear had been limited to Velcro laces and flat, functional shoes. She did not find flat, functional shoes at Justice. She brought me a pair of the most ridiculous, sequined, flashy, silver platform sneakers… with tie laces.

And I took one look at her hopeful little face, thought of what that doctor had said two weeks before about her being in a wheelchair within ten years… and placed the shoes on the growing “keep” pile. Three years later, we do not believe that first diagnosis is what God has for Baby Girl. And I’m absolutely sure that she didn’t need “the shoes”.

I was recently wrong again. I know, I’m as shocked as you are. I was sure once the kids were all in school, I would be able to go back to working outside the home. We would have things like savings accounts and there would be vehicles we could at least afford to fix. And bless sweet Hubby’s heart and broad shoulders, maybe he wouldn’t have to keep taking all that overtime…

Oh, I knew I wasn’t going back to a career in IT with long hours and longer commutes, but when Mini Hubby started kindergarten this year I was pretty sure a job in the school where Oldest Son was starting High School would be a perfect fit. It almost was.

These last several months my heart grew for kids in tough situations, with big obstacles and even bigger attitudes to overcome. I learned how to better support Oldest Son socially and in academics. And because I had the opportunity to see what he sees of the world on a daily basis (trust me, their world is far bigger, scarier and less restricted than ours was) I know what kind of conversations we need to be having regularly. I also had the chance to work among adults again. I won’t lie, it is far more entertaining than working with myself. I found a whole bunch of new people to love.

There was also puke.

So.

Much.

Puke.

Strep throat.

A few times.

The loss of my mother-in-law.

A surgery for tonsils and adenoids.

Some problems with some crucial labs for Oldest Son and Baby Girl, and finally….

The realization that God was sending me home, again.

Usually when I’m wrong, it feels a lot like… failure.  I’ve made the wrong choice, my plan didn’t work. It can feel like I’m giving up, letting go or making emotional decisions (“the shoes”). Because I can’t see the full picture. My vantage point is far more limited than God’s. But, in hindsight, it is a joy to see how He purposes my missteps. Redeems them all and uses them for my good and His glory.

Right now though? I still can’t see what He’s doing. And that’s hard. So I’m holding tight to a few of these Truths.

And maybe this song. 😉

Twice Saved

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.

Surgery and Procedures: A Guide For Caregivers

There are oodles of articles, brochures and pamphlets on how to prepare a child for surgery or procedures. I know, I’ve had the pleasure of reading many of them. They’re extremely helpful. What I’ve found over the last few years though, is that they’re not extremely helpful in preparing the adult that is accompanying and caring for the child. So, as we’re headed in for a procedure today, I thought I’d provide my own list of things I’ve found the most useful to know as the caregiver accompanying a small person for what can be a very stressful time.

What To Bring

The hospital should have what’s called a “Child Life Specialist”, or something similar to keep your child entertained during the endless waiting and to lessen their anxiety with activities and electronics. You’ll likely have your hands full doing the same. But, once they’re wheeled in, you will find yourself with plenty of time on your worrying hands.

First, bring your people. Family, friends that are family, church family, whatever. Bring a person that can run for food if you need it, grab some tissue if you need it, enable you to run outside for some fresh air and most importantly, distract you when the hands on the clock don’t seem to move. These people should also ideally be positive, easy going and good at waiting. This goes for a hospital stay if you have one afterwards too! If you’re looking at an extended stay, come up with a schedule ahead of time. I’d really recommend this if you have a large number of people so that both you and your child are well supported, but not overwhelmed.

Bring easy brain activities. I wouldn’t recommend any difficult novels, studying, or important work you can’t make mistakes on. I’ve often wished I knew how to knit. I think that would be a perfect waiting room activity. My personal recommendations are adult coloring books, your Bible, and conversation.

I’d highly recommend dressing in comfy layers. Temperature often varies drastically by the room you’re in and no matter the procedure or surgery you’re waiting on, it’s going to be a long day.

Bring a cell phone charger and let family and friends know ahead of time you may not be able to update at regular intervals. Depending on where you are in the hospital will depend on what kind of cell phone service you have.

On Your Way

On your way to the hospital, allow extra time to stop for your favorite coffee/ tea/ beverage and several snacks. For you. Since your little one likely can’t eat anything, you’ll feel bad consuming a large breakfast in front of them.

Or, if you’re like my husband, maybe you won’t.

But, either way, there are usually few decent food options in the waiting room, if any, and you may not want to make a run for food for fear of missing an update. Also, a muffin from the grocery store is far cheaper than the $5 dry and tasteless muffin wrapped in cellophane you’ll likely get at the hospital.

While You Wait

Once they’ve been wheeled away from you and you’ve said your very brave goodbye, you will get to experience the phenomenon of “hospital time”. The clock that, at times, flies by or stands completely still.

Now is when you want to take any opportunity to eat, drink, and use the restroom. I would advise against too much of the waiting room coffee, however. I still don’t understand why they provide every poor quality diuretic known to man. Not only does the caffeine not help anxiety, but about ten minutes into waiting I’m already too worried about missing an update to use the bathroom. And the only thing worse than anxiously waiting to hear how things are going, is anxiously waiting while simultaneously holding a full bladder.

This is the point I’m currently at. Doing my “busy” stuff, having a snack and trying not to watch the clock. Whatever you do, sit somewhere you can’t see a clock.

Sometimes, depending on the hospital, you’re back in the waiting room and sometimes you’re waiting in the pre-op room. I actually prefer the waiting room, if you have an option.

Here’s why. Look around you. Nothing helps distract you like connecting with other families in a similar situation. One of my best waiting room experiences was an all day affair during which two of my children were having surgery at the same time. Why? Because while I was waiting I was able to talk to another brave, waiting momma. This sweet lady was several states from home, by herself, with a medically complex kiddo while Dad was at home caring for their other young child. She’d been staying at a hotel for a week to have access to specialists, testing and surgery not available where they live. Things practically in my backyard that this particular anxious momma can forget to be grateful for.

Finally, try not to panic about time frames. You are literally at the mercy of the schedules of dozens of medical personnel. It rarely goes according to the schedule you’re given. If you’re worried, never be afraid to ask someone. They’re used to soothing worried parents, especially in a children’s hospital.

Do you have any helpful advice you’d add for caregivers? Please comment with it below!

Know a caregiver concerned about an upcoming procedure or surgery? Feel free to share!

Do you have a procedure or surgery coming up for a loved one that you’d like prayer for? I’d be happy to pray for you.