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.

Seasons

I stepped outside last week and smelled it. That “fall is coming” smell. Even though it was 80° and humid I could still make out the crisp, wet, smell of decay in the slight breeze. This makes some people excited. They start posting on Facebook about sweatshirts and bonfires and pumpkin flavored everything. Usually paired with pictures of pretty leaves. Other people, like Hubby and Mini Hubby look forward to the first frost with eager anticipation to put an end to their allergy induced misery. I am not either of these people.

I hate fall. I know, some of you probably just cringed and gripped your pumpkin latte a little tighter. Bear with me. I’ve really tried to like fall. I have! I’ve tried to embrace the changing leaves but in the Midwest, this is a VERY short window. I’ve baked a gazillion apple pies. I even tried buying some mums. But alas, to me, fall is simply change.

You may remember that I am not a fan of change. Nope. Predictability, sameness and boring. That’s me. So, I do not look forward to daylight that ends at 4 in the afternoon. I don’t look forward to adding twenty minutes to my morning bundling children, heating up the van and looking for the dreaded missing glove. I don’t enjoy the look of bare trees and dead plants. I want sunshine and color.

I like summer. No bulky coats and flip flops every day. I like long days outside in the fresh air, fresh fruits and veggies at every roadside stand, late mornings and later nights. With my kids.

Ahhh… here is part of my hang up this year. I am especially distraught this fall because my last baby is leaving the house for kindergarten. Mini Hubby has been looking forward to it for months. His backpack has been packed, hanging on it’s hook, for a month. His lunch box has been put on the counter at least once a week in preparation. He’s very excited to be heading to school like the big kids. His momma is not.

Seasons.

It’s been fifteen years for me. I have thoroughly enjoyed this season. And, like summer, I don’t want it to end. I don’t want fall. I don’t want my babies to go to school. What I want, is for them to be little forever. I love snuggling babies, sitting in a rocking chair all day and folding tiny socks. I love chasing toddlers with chubby feet, sticky hands and belly laughs. I love playdates and coffee dates. I love baking and cooking family favorites and volunteering in classrooms and on field trips. I love being able to serve my family and my church family in as many ways as my schedule allows. I also kind of like yoga pants and ponytails and worshipping barefoot in my kitchen.

But I’m done with these things. You see, I’ve got a job. Now, don’t freak out, my stay at home mommas, I am certainly not implying you don’t have a job. Remember, I think it’s the best job. But, I’m starting an actual paying job. And it’s a good one, I think. I will be working in the special education department of our High School. So, really, I’ll be even closer to Oldest Son and right across the street from Mini Hubby. Technically, closer to them than I’d be if I was at home. This job has many good things about it. The type of work (really, I’m so excited to meet these kids!), the same schedule as my babies, and maybe the added bonus of keeping close to them during some really tough years. Not to mention a second paycheck for when a car breaks down. It’s going to be good.

Really.

As soon as I get past this grieving over ending seasons.

There are a few things I need to work out. Like, how does one serve God faithfully in a secular position?

I’ve kind of enjoyed singing and dancing and reading and praying through my hard days. How do I do that now? I feel like that might turn some heads at the High School.

Why is it that the first child out the door clings to your leg in tears and the last one practically runs out on his own?

How do I serve my family well when so much of my time will be poured into other people?

How can I possibly love this next season as much as I’ve loved this last one? Will I ever?

This is the part that has had me crying at the drop of a hat this last week. Well, that and probably some hormones and a decided lack of chocolate due to this elimination diet I’ve been on over a month. But those are different blogs altogether.

So many questions, so many unknowns, so many feelings. This last week I have almost constantly reminded myself that God Is faithful, He knows exactly where I’m supposed to be, and He’s got me during this season, just as the last. But, if you’ve made a similar transition, if you’ve struggled through a changing season yourself, feel free to leave me some encouraging comments and/or reminders of Truth! I’d appreciate it!

UPDATED: Approximately four hours after publishing this post, I was curled up in my closet. You know, trying to work through some of these questions. I was listening to YouTube when this song came on immediately after praying for peace with our changing seasons. I’ve never even heard this song before. I can’t even make this stuff up if I tried. Listen!

Buying Into Busy

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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 spending my time? What am I spending it on?

Where your treasure is, there your heart will be also.

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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?

Trying not to buy into “busy”. Jesus, help me!

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Hand In Hand

Twenty years ago our paths intersected somewhere the other side of Early Adulthood and there was something attractive in the easy, confident, way you walked. Even if I left a safe, observable distance between us for a bit. Eventually though, your persistence closed the gap and we stepped out together hand in hand for the first time. Hearts and fingers tentatively entwined and overlapping. Questioning, sideways glances through lowered lashes revealed a contrast of broad, safe shoulders, thick, strong forearms, but genuine, kind blue eyes and gentle smile. Always smiling. How does a girl resist a combination like that? A girl whose road up until that point had been a little dangerous and lonely?

We continued into a new territory, Together, me and you. Though I’ll admit my focus was most often on you, I was quite amazed at all the new things I could see. With you beside me. Shadows weren’t so long or menacing and you taught me to jump over puddles and sidestep hazards, smiling all the way. Before I knew it, I had almost stopped looking back over my shoulder and was learning to live facing forward.

This next leg of our journey, though, brought us into Commitment and required a quick jump over a broom. Youth shiny new and dressed in finery we glowed and holding hands, made the leap and the promise to stay the course together, forever.

Then, holding our forever hands with new joy and confidence we continued on. The whole world seemed to open up, spacious, in front of us. Oh, how beautiful those days were! The way the sun shone on Possibility in the distance and all sorts of lovely trails appeared as we checked the map. We spent hours wandering along the way, discussing and deciding which one to choose. There were a couple of rough patches (much easier to navigate together) in the beginning then, but nothing that slowed our progress.

Feeling like we could conquer, together, any path we chose, we went for what appeared the most challenging. We took a deep breath and passed the sign welcoming us to Parenthood. Things sure speed up a lot then. Sometimes I wondered why there wasn’t a better description on the map, or more warning signs at the entrance, for it sometimes felt like we’d picked the diamond run as amateurs. But for the most part, we navigated all of the obstacles “Dirty Diaper Ditch”, “Pacifier Pass”, “Sleepless Slide” and several “Trust Falls” together. The going was tough, but the rewards were great and we emerged on the other end with three precious people we’d been entrusted with for the rest of our journey. They’re loud, expensive and exhausting but we found they definitely make the trip more beautiful.

Checking our map again, we realized our choice to visit Parenthood limited our next steps briefly and the terrain looked slightly more winding and definitely slower going (as we’d come out with more baggage than we’d thought). Given our three extra hands to hold, we decided to stay awhile next to Family Forge and focused on raising up and providing for our pack of five. We settled in and made plans for “after”. For when they finished school, chose paths of their own and found someone to travel with. We worked, saved, spent, planned and enjoyed the time and things we amassed here.

Looking out across the hills one day we watched storms gather menacing in the distance. We’d been relatively protected from extreme conditions in that forge but as soon as I saw that horizon turn purple, the little hairs on my arms stood up and I glanced at you scared, waiting.

Giving my hand a quick squeeze, you didn’t smile, but turned away and set to work. This time though, the broad shoulders and work rough hands were no match for the approaching storm. We sold what we could, searched high and low for shelter, to no avail. As the forge flooded and filled we held on to each other for dear life and even though we still had each other, we were tossed so violently to and fro we could barely keep our heads above water. Terrified, my foot brushed up soft against an Anchor. I’d picked it up a few years before, had moved it into our home and had been studying it when time allowed as it seemed to lend a constant, quiet comfort. That moment though, it seemed to come alive and hold me fast. The storm didn’t cease it’s battering, but held firm by the Anchor I was able to once again grab your hand and those of the children.

The waters receded, we caught our breath, but we’d be forever changed. You kept on moving, working, fixing, taking on anything you could to restore what we’d had, to forget about the change of the landscape as if by sheer force of will you could move the mountains that had shifted directly onto our path. We often held hands in the quiet, without words. You with the weight of us on your shoulders and me with my gaze on those mountains. Exhausted, we had no idea what to do or which way to go next. Gone seemed our confidence and definitely our joy.

But during the clean up. Sifting through the debris, I kept resting on the Anchor. The workload for the days seemed unchanged, the mountains remained immovable, the horizon still tinged grey, but there was always the promises of the Anchor to hold me fast. In those promises I found the joy I thought carried away. And it remained, regardless of circumstances.

I’ll never forget the day you tripped on that Anchor. The way you wrestled with it for days.

You didn’t need the Anchor.

It was enough that it was in our house…right?

But that load you were carrying left you too worn out to fight it for any longer. Led to the Word to study the Anchor of our souls, the Creator of our mountains immovable and the love of our Savior, you invited Him in. Into your heart, into our home and into our marriage.

We’re working our way now, hand in hand, following Christ, around our mountains. Sometimes hand in hand is through tears. Sometimes it’s through laughter. But still together. Always thankful. Because now we both know our final destination (even if we don’t know what will happen in between), that we’re never alone, and our God is bigger than any mountain we come up against.

A couple weeks ago you insisted we jump over that broom hand in hand again. Renewing former promises and making a few more that are meant to last the rest of our journey together and acknowledging the source of the love that has, and will continue, to sustain us along the way.

Blessed to make this journey hand in hand, with you, Hubby.

The Other Mothers

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

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

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

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

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

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

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

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

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

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

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

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

Love Like A Hurricane

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The blaring music bounced off of slowly filling stadium seats, vibrated the grass beneath our feet and mingled with voices raised to accommodate the volume. Careful to stay on the correct side of the yellow painted line we wove our way among the throng of people jockeying to get a good position to see their favorite players on the field. Even to a non-competitive like myself, the excited, nervous anticipation was a palpable thing. One could almost smell the testosterone mixed in with the concession foods. This was prime people watching territory and for a detail person like me, quite overwhelming. I can only imagine the rush of emotions for Oldest son, the “Wish Kid”.

I’m embarrassing him completely by taking goofy selfies on the 30 yard line and pushing him at a large group of bouncing cheerleaders for yet more pictures because even though he’s taller and wider than I am, I still have some authority and I take full advantage. As we’re doing our best to match names to faces of men covered in football gear on the field and kicking balls into nets, we turn to see Oldest son’s favorite player. And this momma’s eyes fill and spill over at the smile on my man/boy’s face. All of a sudden there are TV cameras and a circle opens up in which he gets to be the center. He and this player he has memorized stats for, watched countless plays of and whose last name he sports on his jerseys. I’m doing my best to snap pictures of a ball and jersey being signed but in truth can’t see the screen of my smart phone anyway. Instead I’m wiping tears and running nose on my sleeve because I know that this particular man/boy knows that being in the center does not always feel good and I wasn’t quite prepared for the look of relief and joy he would shoot me.

Because I’m his momma I know. I know how much this means to him. Being diagnosed with a genetic disorder in Middle School does not generally place one in a position of acceptance by peers. Missed school does not help one to excel academically. Missed practices and extended periods of restricted activity do not help one become the star player of their team. And the differences in the way one’s mind and body function do not make social interaction any less awkward than they already are at this age.

But because his Heavenly Father loves him more, knows him more, He knew what our man/boy needed. And because He is sovereign, loving, faithful and totally extravagant in His grace, He could provide it. Oh, it wasn’t necessarily the amazing trip, the sideline passes or the meet and greet with a favorite player. Nope. He needed to know just how much he’s loved. That even if he can’t see how God’s plans could possibly be good for him or glorify God in any way, God is still very much for him. Present and active in his life. Because when you’re a man/boy with a genetic disorder that creeps into so many aspects of your young life, it can sure seem like that’s not the case. No matter how many times your momma tells you.

Then there are fireworks at one end of the stadium and it turns out this is the signal to vacate the sidelines. It also means that if you’re not quick enough in the tunnel, the opposing team will, in fact, overtake you. We hustle to seats provided, laden with trays of food and bags of merchandise into rapidly filling stands. Over the next few hours I get to watch Oldest son scream, jump and fist pump his way through four quarters of football. Caught up in his excitement and a new love for a team that showed my baby such kindness I will confess to praying for the outcome of a football game for the first time ever. So, if you’re a Jaguars fan, you’re welcome!

But, there was far more than one victory that night. As we got into the relative quiet of the limo (Yes, his Wish was complete with limo ride), and the conversation centered on the events of the night it hit me. Just as powerful as the hurricane that had recently swept through the lower level of our hotel. God’s love for us just about took the wind out of me. The words to David Crowder’s song came forcefully to mind.

He is jealous for me
Loves like a hurricane
I am a tree, bending beneath
The weight of His wind and mercy
When all of a sudden
I am unaware of these afflictions eclipsed by glory
And I realize just how beautiful You are
And how great Your affections are for me

Palm trees staked up and stripped bare but still standing flashed by tinted windows and this time my heart turned over with the sheer force of His love for us. All of us. Grateful for every moment on this trip that His love spoke louder than any circumstance, good or bad.
And we are His portion
And He is our prize
Drawn to redemption by the grace in His eyes
If His grace is an ocean, we’re all sinking
When heaven meets earth like an unforeseen kiss
And my heart turns violently inside of my chest
I don’t have time to maintain these regrets
When I think about the way that He loves us

Tangible reminders of His love for Oldest son litter our entire house. Rather than pick up the tee shirts, water bottles, caps and bags, I am leaving them out. Thanking God for the gifts and praying that each time my confused feeling man/boy looks at them he remembers the Love that gave them to him.

Fierce.

     Relentless.

          Powerful.

 

Plans, Preparation, Predictability… and Purpose.

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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.

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Fighting For Balance

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.

You, with those walls….

You, with those walls…I see you.  Fear has kept you behind them but I hope love will draw you out.

I hear the exhaustion in your voice from a lifetime of battling alone. I see the anger burn bright in your eyes and fuel the strength for another day. To wake up again and build and maintain all of the walls of defense that tower so high they block out not just the perpetrators of pain, but any light and joy as well.

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I see the protective prison you’ve locked yourself in and I see the hurt hidden deep within the fortress, nearly hidden by all of the anger, resentment and bitterness blowing outside the walls.

All of this fire, brimstone, bluster and force to protect a heart broken, of course.

I know where you are because I’ve been there too. You and me, more alike than you knew. Have you felt it before? That there’s something wrong with this world and you don’t quite belong? That you were made for more than betrayal, pain and suffering? That it’s all just a bit too much and no one seems to be in charge? So we create our own little kingdom of safety, block out the bad and try to control everything within.

Constantly striving to create that one place where everything goes as planned, in the proper order, in its proper place. No surprises, no disappointments, no pain. No light, no joy, no freedom.

But now I’m outside the gates and my heart breaks seeing you still fighting to stay within them. Because I love you, I’m willing to weather the possible storm and share something with you.

You want to know what happens when the walls are built, the gate is closed? You’re trapped inside. It’s lonely and it’s dark. You exhaust yourself maintaining your defenses; going over battle plans. You have yet to realize that safety is not synonymous with happiness. In fact, those wounds unhealed fester and bleed new because you’re all alone with them, picking at them, making them raw and not letting them heal. I know you’re worn out and I pray every day that you are tired enough to stop fighting alone; that you would realize that what you’re doing isn’t working.

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I long for the day that you will realize that all of your seeking, struggling, wrestling and striving to find happiness has led you to a prison of your own making. That you would see your defenses have kept you from not only giving, but receiving love. Worse, in your need to protect yourself from hurt, you’ve inflicted hurt on the very people you love most. How I hope you would learn that safety, rest and happiness are not found in a climate, a location, a bank account, the condition of your house, but a Person!!

That you would know that the way to healing is straight through the pain with the only One with the power to heal it!

There is freedom outside those walls of yours! A life free of anger, resentment, bitterness and pain. True joy in life! Freedom to remember the hurt inflicted by others but not let it rule your life and keep you from your own peace; to live the life you’re meant to. A life where forgiveness and grace abound. I pray that God would tear down your walls more formidable than Jericho’s. That He would soften the tender heart you’ve worked so hard to shield. I pray that you would see past those walls to the abundant blessings you’ve been given and know that God has been with you all along. That every step of your journey, every heartache, every hardship, every mountaintop and valley has been used to bring you closer to the Father that loves you.

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So, now I pray that the Spirit would reveal to you the God who longs to walk with you through healing and true living. The God who can remove your heart of stone and give you a heart of flesh.

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Oh! If you only knew the abundant blessings within your reach should you just forfeit your kingdom for His.

**Names of the guilty have been omitted, except myself, which has been one of the greatest offenders of all.