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.
I have spent the last couple of months processing and praying about how to share this with you all. Because it’s an amazing thing. But in order to truly appreciate the provision, you need to fully appreciate the need. And though much of the need was of a financial nature, the emotional need was just as, if not more, important.
A few months ago, I was invited to participate in a podcast with an organization called Hunter’s Hope, to share how God has been, and continues to be, a very present help and Hope in our family’s lives as we navigate Leukodystrophy. Upon completion of those recordings, they invited all of those that participated to a retreat during which we would have opportunity for fellowship and community with those similarly afflicted and walking with Christ. It was a gift the enemy would try to steal. In several ways.
Shortly after recording, I was approached about an opportunity to speak at a local women’s conference on Romans 5:3-5. Considering the timing of the invitation and the subject matter, I was certain this was something the Lord was asking me to do.
So, I was simultaneously proofing the transcript from the podcast, writing for the conference and writing a mini message for the retreat. I should add that none of these things are within my comfort zone. In fact, if I was to make a list of things I dislike, public speaking would take a top slot. I have a great story about a public speaking class in high school that involves hives and a “D”, by the skin of my teeth, that I would love to share with you sometime.
But I was also struggling with audience and subject matter. You see, whenever I share our family’s story with people I start to feel this “separateness”. Even with fellow Christians, I am usually reminded that our life is not “normal”, it just doesn’t look the same. Even with those that love Christ, there are many that will avoid us because they don’t know how to respond or relate to our family. Leukodystrophy often sets us apart. As I prepared, I knew I needed to prepare for these feelings as well. Yet, I am absolutely convinced of the need to share the incredible ways God has loved and provided for us. How we have had the opportunity to know Him, trust Him and love Him more intimately through trial.
Then there was the retreat. I am a homebody. I don’t like travel. I prefer routine and the familiar. So, I was preparing to step out of my box. Because it was a gift. But as I prepared for that retreat, I knew I had to prepare for another kind of “separateness”. Within the world of Leukodystrophy, Hubby and I often struggle with survivor’s guilt. Because our kids have a treatment and have received that treatment in time to positively impact their quality of life. In those circles we are acutely aware that we are the minority and that the quality of our children’s lives has come at the great cost and contribution of so many beautiful children that came before and paved the way for things to speed diagnosis and treatment. And my heart breaks for those families. I grieve with them and wonder why our children were spared, while theirs were not. Survivor’s guilt.
So, there I was feeling stuck in the middle. Acutely aware of our “separateness”. Simultaneously feeling sorry for us and feeling intense gratitude. When Oldest Son borrowed my car….and it blew up. Okay, now you’re likely picturing a fantastic fiery explosion. But it wasn’t that dramatic. It turned out to be the engine that blew up. Which is much less impressive than one would think. It just quit. And sprayed liquid all over the highway. Done. Kaput. Dead. Or, as the sympathetic mechanic explained, “catastrophic failure”.
Now, this would likely be stressful for almost anyone. But, when your credit was completely destroyed by a diagnostic journey and you had saved and saved to buy that vehicle outright…. For it to barely last a year, it’s a little more than stressful. It’s downright frustrating. And when you have absolutely no savings to replace it and no way to borrow money to replace it, it becomes a bit of a crisis.
So now I’m feeling the “separateness” on a whole different level. Because now I’m aware of another way in which I often feel alone. And this is one part I wasn’t sure how to share. So, in order to honor my mother and father, and to love you well and protect your hearts, I will simply say that due to the fall, we don’t have much family to give us a hand. Or a co-sign. Or a down payment. Or maybe just a hug.
This is when I MAY have indulged in a small(ish) self pity party. In my mind’s eye, I always picture Baby Girl at about two years old, laying on the floor of the kitchen at my feet, face down, with her hands covering her eyes. And that was my inner self. Channeling my inner two year old, still sitting at my Father’s feet, but in silent tantrum mode because I didn’t like what was happening. Although, if I’m honest, it wasn’t completely silent. There may have been a little dialogue along the lines of….
I’m doing all the things! I don’t like to speak, but I’m gonna speak. I don’t like to travel, but I’m gonna travel. I’m going to feel all the feels I don’t wanna feel and step out of my box and I’m gonna shine my light and I’m gonna tell of Your goodness, even if it might kill me (okay, there was a little bit of drama) and we could sure use just a LITTLE bit of protection while we do it! A hedge. Even a speed bump for the enemy to slow him down would be helpful. Heck, could You blow up HIS engine instead??
So I took the gift card from a sister in Christ for travel expenses, packed my bags and stepped out in faith. With no plan but His because we had no way to fix it.
And surprise, surprise, He had a plan. And it was SO much better than I could have asked for or imagined.
It started with a borrowed vehicle and the gift of time so we could try to save enough money for a down payment. Hopefully enough of one to qualify for a loan. We hadn’t used credit in seven years, I was inwardly preparing for the best case scenario of a ridiculous interest rate on another “lemon” from a shady dealership. But we’d have a vehicle, and that was the important part.
Then, it really got good.
We were down to one more week with our borrowed wheels and I’d just put on my list to cancel the next couple of weeks of Baby Girl’s occupational therapy before I started dinner. Mini Hubby was climbing walls and getting on stressed nerves so I sent him to take out the garbage and get the mail while I got making chili.
My kitchen is still holy ground.
I’m chopping onions and garlic and singing Shane and Shane’s Psalm 46 (One of my “fight songs” because it reminds me how big my God is) and my heart is softening with sautéing onions and the stress drains off with the juice of diced tomatoes and the door bangs open with an oblivious boot from an oblivious boy and both boy and blur of puppy race by with a stack of mail and a lot of noise and I laugh because…holy ground. While my chili simmers, I open this.
And it all goes quiet. Even the boy and the puppy. And while the chili burns and my ears ring and my eyes and nose fill, the Lord leans down and grabs my face in His hands and tenderly tells me,
“You are NOT an orphan. Stop acting like one.”
And now I’m laughing and crying and the “separateness” is gone because the Love envelopes me and crowds it all out. And I don’t even care that my holy ground smells suspiciously like scorched dinner and I run into Hubby who can’t quite wrap his head around what I’m holding.
Because that kind of outrageous generosity takes awhile to process. And when you know that the generosity came from an outpouring of love for a little girl lost to Leukodystrophy, it gets even more complex.
I spent the next several days “God Crying”. This happens quite a bit in our house. When the kids have caught me at it, I used to have to reassure them that it was a “good cry”. While texting with someone one day auto correct redeemed itself and changed my “good cry” to “God cry” and I realized it was far more accurate. They’re tears of awe, gratitude, joy and love. I think, a form of worship. And if you’ve ever heard me sing, you know it’s a form of worship that is far more beautiful, even if it’s an ugly cry.
Now I’m gonna feel a little like Billy Mays, because, “That’s not all!”. While we were still processing a week later and narrowing down our car search, we got an envelope. With another $1,100. Which brought the total to almost EXACTLY what we paid, with tax, for the lawn ornament with the blown engine. And this generosity came from the other side we sometimes feel “separate” from.
When that car engine blew up, I could not have imagined a scenario in which we would have our needs filled so completely. But even better, in a way that reminded me of my perfect Father’s love and care for me….through people that so thoroughly removed those feelings of separateness. Through our Leukodystrophy family and our church family. So much more than I could have even thought of or imagined, never mind asked for.
Ephesians 3:20
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
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.
One minute it’s there, and somehow, in the demands and disappointments of life, I misplace it.
So I start patting my proverbial pockets. I know it couldn’t have gone far. It was here but a minute ago….
Bereft at it’s loss, the first place I check is prayer. Rummaging through that pocket it’s plump full of confession, repentance, and petitions. Because as is often the case when I misplace Joy, I have a deep awareness and grief over my shortcomings and an excessive focus on my, as yet unmet, needs. There is a lot of stuff in here. But not Joy.
I dig next into the Word. This pocket is usually full of treasures. I scan text after text that normally shines bright with Joy and find it dulled. Experience tells me it’s likely not the text that has dulled, but me. The words, instead of Joy, bring with them an aching memory of it. Like the nostalgia of fried clams on a boardwalk mixed with sand, the sounds and smell of the ocean and burning of bare feet, it brings forth a Joy remembered and a desire to return, but the Joy itself… elusive and the more I return to it, the more keenly I feel it’s loss.
And this is where God does this thing.
One last pocket to check.
Maybe it should have been my first, as this is often what God uses to direct me back to this lost thing.
I sit and listen to a message given by a brother in Christ in which the spoken words ring loud enough to hear through the noise of our daily life.
1 Peter 5:7
Cast all your anxiety on him because he cares for you.
He cares for you.
Then a stop at the church office yields an envelope full of incredible generosity in answer to secret anxiety and one of the many prayers in that other pocket. A need only known to our Father.
He cares for you.
Immediately follows new test results that give some hope and a direction to this gnawing fatigue, infections and insomnia.
He cares for you.
Our pastor’s passionate message on the one lost sheep and His relentless pursuit of … lost things. Lost people.
Luke 15:4
4 “Suppose one of you has a hundred sheep and loses one of them. Doesn’t he leave the ninety-nine in the open country and go after the lost sheep until he finds it?”
Because He cares for you.
And then as I sit in worry about these kids and the pocket full of prayers seemingly unmet and unanswered I get a slow trickle of response. Texts from a small group, sweet brothers and sisters who join in our petitioning. Emails from specialists who care and teachers and staff from school that are eager to help. Oh, not an answer to all the questions, but a sweet reminder that God goes before all of this too. Whether I can see it yet or not.
Because He cares through them.
And with each reminder from community, from fellowship in the Body of Christ, there is a spark of that which I search for. That I’d thought lost. Each spark illuminating the way back to Joy. I hold each one to my heart and pray for that spark to ignite a flame. Joy unsurpassed and uninhibited by circumstance because it is Joy in the One who cares for me.
The One who breathes stars, pursues and cares for me and though I may misplace knowledge, I will never, myself, be lost again.
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 Blessedare those who have regard for the weak; theLorddelivers them in times of trouble. 2 TheLordprotectsand preserves them— they are counted among the blessed in the land— he does not give them over to the desire of their foes. 3 TheLordsustains 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.
I pulled into our local big box store’s parking lot and being a creature of habit, pulled into our usual spot. Also as usual, the begging for junk food and toys started hardly before I’d put my beloved minivan in park. This time though, I was distracted by “the smell”. If you were ever a teenager with no money, you know the one. That hot, greasy, mechanical smell that indicates (far more reliably than those lights on the dashboard) something expensive is wrong underneath the hood. If you’re like me, and you smell it while driving, you hope that it’s the guy in front of you. But if it’s still there when you’ve parked, you know you’re in trouble.
I was in trouble.
I sent a quick text to Hubby to break the news. Then, an SOS to Auntie Mamie in case I wasn’t able to go pick up Oldest Son. Whom we had just dropped off at tennis practice. And in that three minute timespan my other two darling offspring decided this was an opportune time to fight over spilled water. It’s almost as if they can smell my nerves fray as strongly as “the smell” coming from the van. I hustle them out of the van, past the Expect More, Pay Less sign, and into the air conditioned entry so they can argue over who is going to clean the germ infested handle of the cart. Really, have they no sense of self preservation at all?!
Considering our property taxes are due the end of the month, Hubby has a bad tooth and no more dental for the year, the dog needs a trip to the vet, and my van has “the smell”, I am now seriously counting on this store to live up to it’s pay less promise. Herding (now wet) cats through the store and trying to remember my grocery list, I’m also texting with Hubby and Auntie Mamie about the van. In light of the impending cost of repairs, I’m mentally crossing off batteries for the Xbox controller as I make plans for Auntie Mamie to follow me home and promise Hubby I will do no further driving. He’ll stop on his way home for parts and we will have to postpone our fishing trip with grandpa.
I’m distracted by the fact that no matter how I rearrange my plan, there is just not enough time, or money, in this day. But still I’m trying to squeeze a few more minutes and a few more dollars for what they’re worth as I squeeze more into my cart. And almost walk, distracted, by a sister. As we talk, I’m reminded of meals I’m getting ingredients to make. And the sweet lady that needs them. I share the request for prayer for that family and possible needs they may have in the future. In those five minutes of conversation, God purposefully drew my gaze from me. And toward Him. Away from my texts, away from my shopping list, away from my undone chores at home, my schedule Tetris, and away from my bank account.
How easy it is to fill my cart, fill my life, with anything but Him! And isn’t that exactly what the enemy would have me do? Fill my every moment, my every thought with something else?
If time is money, where am I spendingmy time? What am I spending it on?
Where your treasure is, there your heart will be also.
What am I buying with my time?
I look into my cart and I realize I’m too often buying busy. I’m buying distraction. I’m buying into probably the biggest lie of our age. I don’t need more time. I need less “stuff” to fill it.
This road we’re on the last couple of years has taught us so much. When you walk through the fire, God has this way of burning off a lot of the excess. Out of necessity mostly, we’ve purged not only a lot of “stuff” as far as possessions, but a lot of “stuff” that took up our time. The result being we have less “stuff” to take care of, to spend time on. And, we’ve been trying to be very purposeful in stewarding our time as well. Limiting kids’ activities, electronic time for all of us, and saying “no” more often to things so we can invest our time wisely. (The learning to say “no”, even to good things, to say “yes” to better things, always reminds me of Jesus leaving the multitude to pray.) Turns out though, that this learning and adjusting is apparently a continuous process? Sigh.
Finally in the check out lane I pry Mini Hubby’s hands from the totally fascinating toy he has to have but would forget about by the time we got home and get an email from another box store telling me the things I need to get because I “deserve them”. This is when I may have asked Baby Girl to go put back the box of Peanut M&M’s I may have impulsively grabbed to make me feel better about “the smell” on the way home. (You know, because I deserved chocolate.)
I’m much less frazzled on my way home with Auntie Mamie tailing us to make sure we get there and the post tennis, smelly, teenage boy in her vehicle, not mine. The kids get to work unloading groceries and unorganizing my pantry while I talk with a friend about her latest trial and make plans to have coffee and talk in person. I take a break to video tape Mini Hubby’s latest Imaginext superhero adventure so he can watch it when he’s done and then promise to listen to Oldest Son’s latest favorite song after he’s done showering. Lunch and a nap for Mini Hubby leaves me with a little Minecraft time with Baby Girl before spending some time in prayer.
My van is still in need of repair, Hubby’s tooth still hurts, the dog hasn’t gone to the vet, we still have to cancel fishing plans, my chores aren’t done, but somehow I feel like I’ve made the right investments for the day?
This mother’s day is a bit different than the past four. In a good way. Or a mostly good way. It started a few days ago when Oldest Son and Baby Girl had their latest appointment in neurology.
Neurology hasn’t been my favorite. This place of MRI’s, EEG’s, spinal taps, bloodwork and few answers but more questions makes my heart race nervous in the parking ramp. That day though, kids touched noses, hopped on one foot and images stayed the SAME. This momma breathed deep, exhaled grateful and smiled to her eyes for holding steady. Steady hands, steady legs and steady labs. This momma stayed up late overflowing grateful. And guilty. Heart rejoicing and heart weeping. Oh, she sang praises on the floor of her closet, wrapped warm in undeserved grace. Then prayed hard for the other mothers.
All of this mothering is hard. SO hard. But there is some mothering that hurts more than others.
The kind of mothering that happens when you lose a child to mother. I saw that this week. Prayed for that momma and hurt for that momma as she stood in front of a school she no longer had a child at. What does one do when you have a lifetime of love for that child and the lifetime is far too short?
The kind of mothering that happens when a child goes their own dangerous way. Prayed for one of those beautiful mommas this week too as she watches and prays and waits. Waits for that child’s saving, fully aware that she can’t be the one to do it.
The kind of mothering that happens when one does all the things to be a mother, but hasn’t been given the gift of the child. I prayed for one of these precious ladies too. For she has helped mother my own babies. Will continue to pray that she understands the beauty of mothering whatever children God gives you, no matter what that looks like.
And finally, the kind of mothering that happens with a special needs child. These other mothers weighed heavy on my heart this week. Because not all of them get to hear good, steady, news.
These other mothers stare fiercely brave into the hardest things. Things they won’t tell you. But I will. So you can pray for them too.
Their sleepless nights last far longer than those infant years. These warrior mothers navigate hospital halls, insurance denials, government paperwork and medical equipment. Always advocating, always fighting. They have grieved a diagnosis, mourned a prognosis. And if it’s a degenerative condition, they’ll grieve the loss of each ability, one by one, over and over again. And at the end of their hard days, their want to give up days, they might break a little knowing the only break they’ll get is when their heart breaks.
Or, they don’t have a diagnosis at all. Oh, I’m hurting for these other mothers too this week. You see, our diagnosis is CTX. And after years of research, I know about all the mommas before me that knew something was wrong. That did all the things to find the answers. And lost their babies before they found out what they were. I also know that there are likely hundreds of mommas out there right now, praying for this diagnosis and might not get it in time.
You see, I know I’m the momma that’s had a few hard years. But I’m also the one that gets the diagnosis, the treatment, the good doctors and the steady news.
So this Mother’s Day, I’m rejoicing and grateful for good news. And I’m praying for all the other mothers. That they know The Good News. That they find their rest in the only One who can give it to them. And that they know that there are mommas praying for the comfort and strength they need to persevere.
I just made an appointment for our sixth surgery in eight months. “Our” meaning our family. More specifically, there have been two for oldest son and this will be the fourth for baby girl. I’m not really digging it. Once again, this wasn’t part of my plan.
I really like plans.
Things like predictability and preparation are some of my favorite things. No joke. I really enjoy schedules, lists, calendars, highlighters, etc. I get super excited when I get to use my label maker. I know, some of you are totally cringing right now. You are likely those people that do crazy things like ride in hot air balloons, jump out of FLYING planes or off of perfectly good bridges with rubber bands on your ankles. It’s okay, I don’t understand you either.
Yup, you can take your mud runs and your “spontaneity” and I’ll be perfectly comfortable with a nice boring day, free of chaos, reading a great book. If this life thing were up to me, that would be my plan.
But it’s not.
So my flesh (every extra fluffy pound) often sits in waiting rooms or on route to appointments re-rearranging my mental schedule for the hundredth time and crying out for just a little bit of boredom. A little less crisis. My flesh wants to be the Mom that’s at home instead doing the laundry, putting together a nice healthy dinner, looking up birthday party ideas on Pinterest, volunteering for ALL THE THINGS, welcoming everyone home to a nice, relaxed, stress free house and never dropping any of the balls. (I am constantly dropping balls. Very frustrating.)
I feel like it’s a good plan. I also often feel like I could really do some amazing things with God with this plan. Just think of how big my mission field could be! I could do the mission trips and serve in all sorts of ways I just can’t right now. I could be that child of God that is running around with the Good News in far away places instead of running around chasing my tail, struggling to serve just the few in my reach. I’ve tried to convince God of the brilliance of my plan but either this sounds a lot like bargaining and whining to Him or He is just pretty confident that His plan is still better.
So my faith will keep reminding me that I may have plans, but God has a purpose. On days like today when my flesh just really, really, wants a little boredom, I will instead cry out in prayer and ask my merciful Father to show me just a molecule of His purpose in all of this. To help me re-remember that His plans are for my good and His glory.
Because my best laid plan has nothing on His purpose.
It was the sideways glance and raised eyebrow from the pre op nurse that got me thinking. I can’t really blame her for not understanding because prior to life with medically complex kiddos, I wouldn’t have understood either. That they have medical, spiritual and emotional needs and each are just as important to maintaining some kind of balance in this crazy life of genetic disorders.
So, as they wheeled our oldest son out the door into surgery and I was sitting with our daughter in the same pre op room getting ready for her surgery, I explained to the nurse why I brought my thirteen year old son to see his first concert the night before.
I told her Imagine Dragons is his favorite band and his amazing aunt got the tickets for him for his birthday. I explained that he was very concerned that he not miss the last of soccer season, or the beginning of basketball season so this gave us a very small window in which to schedule the eye surgery. (Because, well, thirteen year old boy priorities.) I tell her that this rare disorder of theirs, Cerebrotendinous Xanthomatosis, comes not only with juvenile bilateral cataracts, but with a lot of anxiety. So, I scheduled the surgery on the only date available in between sports and brought him to the concert the night before. He had a great time and, although tired that morning, he was much less stressed about the surgery.
As the blood pressure cuff inflated and the heart monitor beeped I colored with our daughter and explained that for her, Dad spent the night playing Minecraft to distract her. The decisions aren’t always easy ones to make. Trying to balance all of their needs is hard. They are more than just flesh and blood. In the midst of endless lab work, exams, specialists and testing it has become more and more important that we make all of their needs a priority. Sometimes this means ice cream before dinner rewards for copious amounts of blood work. Sometimes it means skipping homework for prayer, not following that strict diet perfectly so that they can eat what the other kids at the party are eating or taking the injury risk for that activity that they love.
We have two medically complex kiddos and this means we have complex lives with complex decisions. And we’re just doing the best we can to meet ALL of the needs.
And you know what? Much later that day, our son was out of surgery, out of PACU and sitting somewhat patiently with us while we were waiting for our daughter to crack open her precious little eyes and the PACU nurse comments on how easy going and patient our kids are. After 12 hours in the hospital neither one were complaining and both were good naturedly trading jokes with us and the staff.
So, we will keep fighting for balance. We know our kids and their condition better than anyone else we come across, no matter their degree. Tonight, one day post op, they’re going to youth group. Because they want to, and it’s just as important as the medication they’re due for in an hour.
I’m not saying we make all the right choices. I’m definitely not saying we’ve got this thing figured out. Actually, we really screw it up sometimes. But, what I’m saying is, I’ve learned that our kids’ needs are complex and go far beyond the physical. I’ve learned that not everyone is going to understand that. I’ve learned that sometimes I will get a sideways glance and raised eyebrow at my decisions. And I’ve learned that that is totally okay. Sometimes I’m right.
I wonder when August 19th will pass without me noticing. Some of you can probably relate to an anniversary of something you don’t celebrate. Two years ago, after searching over a year for a diagnosis for our daughter, we received a phone call with her test results that turned our life upside down. Honestly, some days I still feel rather out of sorts. But, for any of you that might be going through some rug pulling out from under you stuff right now, I want to share something with you on our anniversary.
You will laugh again. And if you continue to trust God through this, you’ll find joy in Him again too.
Oh, two years ago I was certain I would never laugh again without it being saturated in sadness. That it would never quite reach my heart again.
I was also very unsure that I would ever find joy in my relationship with Christ again. For sure, there was a long period where I sought Him solely for comfort and peace I could find nowhere else. But would I ever rejoice in His presence again? Ever bask in His love for me? I just couldn’t see it.
In case you can’t see it either, here’s a story of healing, laughter and joy.
Last fall I traveled out of state for a meeting with the pharmaceutical company that makes the medication for two of our children. Because of my past, I had a thing about flying. Lots of things actually, but mostly panic attacks and a whole lot of anxiety. It wasn’t until I had made it to the gate on this trip that I realized I had made it sans attack. There’s a blog post somewhere about it. So, naturally, I was praising a healing God and feeling pretty good about this whole trip by the time wheels were up.
By the time wheels were down though, I had already forgotten Who I was traveling with and that I could totally do this thing. I looked at the time on my phone and was already calculating how much time I had to make it through the terminal, to baggage claim, procure a cab, check into the hotel and make it to the first meeting in time.
As I was exiting the plane, I happened to hear the flight crew talking about a certain president, major pop star and local baseball game all in this city over the next couple days. I became less and less sure about my timeframe.
Why did this airline decide they needed MY particular carry on to be checked at the gate?! Nevermind. I’ll hustle. Keeping in mind I’m only five feet tall, my “hustle” isn’t as fast as I’d like. By the time I make it to the baggage claim I’m sweating and out of breath and that’s only partially because I’m terribly out of shape. Anxiety has returned.
No worries! My bag is one of the first on the carousel. Hallelujah! Now, to find a cab. I happen to see a sign as I’m frantically reorganizing my paperwork that says something about this airport only permitting licensed taxis in designated areas for our safety, blah, blah, blah as I head for the closest exit. I look left, then right, not a taxi in sight. Darn. Where is this “designated area”? I head back in and down the line of baggage claims further, looking for a sign. I see nothing.
Okay, I’ll try the next door and then I’ll just ask someone. As soon as I step out the doors a suspiciously well groomed man asks me if I’m looking for a cab. All of a sudden, I feel like I should not tell him that is exactly what I’m doing. It must be written on my face though because he then tells me he happens to have a cab, just there across the loading area, in that nice creepy parking ramp and if I’d just follow him he’s got great rates. Hmmm… what was that sign about my safety??
After politely and quickly refusing I actually do hustle back inside this time. I am dangerously close to a panic attack when I finally see a sign for the taxi pick up line. I make a dash for the line and put as much distance between me and the potential serial killer as I can. Although once in line, I see he has (suspiciously) disappeared.
I am safely deposited into a “licensed” cab, give the gentlemen that isn’t so keen on hygiene the hotel name and try to take deep, calming breaths. I say “try” because I am suddenly being whipped around by a cab driver that must be practicing for the Indy 500. Every time he comes to a sudden, neck breaking, stop, I need to brace my foot against the seat in front of me and every time he goes, my empty stomach gets splattered all over my backbone. I am anxious and sweaty and now turning shades of green. He must be color blind because in an effort to avoid traffic he starts cutting off the exits, looping around and coming back on the freeway. The fourth time, my water bottle breaks free of my death grip and is being slammed all over the minivan and my purse takes a nose dive. I catch most of the contents mid air. I don’t dare close my eyes, but this is when I start praying. That I don’t throw up. That I can start to breathe normally again. That I would survive to the hotel….
And the driver stops the cab. In the middle of the freeway, in rush hour traffic and reaches back and throws open the back door. I am absolutely stunned and my poor brain can’t figure out what in the world he’s doing except maybe throwing me out?
Then he points. And asks me if I want to take a picture.
Of the brilliant rainbow.
Fumbling for my camera on the floor, crying and belly laughing like a lunatic I squeal, “Yes!”. And I remember that I serve a God that brings healing. Who also has an amazing sense of humor that has me belly laughing and rejoicing in His presence again.
Oh, and I made it on time, breathing, without throwing up.
Valleys & Victories 