Remember “magic words” as a kid? “Abba Kadabra?” “Please?” “Thank you?”  Those pass-words would literally turn a wall of impossibility into an open door.

As a kid it might have been a fun game, but now what about when it’s the door to that doc in the ER?

And as a side – I can’t think of this topic without thinking of our fateful day when I became a “special needs” mom – when we did NOT get access to the doc, where we waited hours as our son was knocking on death’s door.

He made it, and I’m grateful for that, but I  do know that open doors could have made a HUGE difference.   Experts have since told us that the time in that waiting room was crucial.  I’ll never forget the Dad with the son with a cut finger that was rushed back – as my son’s breathing slowed, as his temperature dropped and his eyes rolled.

Another story for another day, but you get the picture.  As a parent you sometimes find yourself at that pass, with a monster at your back and a stone wall directly ahead.  Sometimes you just don’t know the word that will open up a way, and as a 24-year-old mom with a whole 9 days of parenting under my belt, I had no idea how to get anyone to take me seriously, at the doctors office visits, at the hospital, on the emergency nurse phone line, in the emergency room.  (I don’t blame myself for this though. I did try at every turn, and ultimately God is sovereign.)

In the past 10 years, I’ve seen magic words open a lot of doors.   I’ve seen simple words transform a stubborn nurse into a total sweetheart.  The guard-dog receptionist can melt like butter.  The school system that won’t budge can move budgetary mountains.  The insurance company pinching pennies can cover that power chair.   And the office manager can be a true friend.

There is a key for anything worth having, anything that comes at a higher cost requires a passkey.  Money, time, effort and often – simple words open new paths.

Economics and words.

The special needs world has it’s own weird economy.  Where the demand exceeds the supply, magic words can make a world of difference.

It’s not always a conspiracy.  People in positions to grant access can feel beat down. They have their own struggles in life, sometimes have to be around a LOT of emotions and often just need to hear something kind, motivational or both. It takes extra energy to move in new directions or put forth the effort, think outside of the box…and special needs are all so unique!  (We might as well throw out the box, right?!)

Once in an IEP meeting we’d spent hours, days, weeks trying to get to a solution that would allow for our son to safely attend school.  We’d even had to pull him out of school for a few weeks.

“Least restrictive environment”  changed that.

A few weeks into it, it began to look like a supervisor was forcing a medical professional to make determining decisions based on his own non-medical opinion and by doing so, not supplying “the least restrictive environment” required for our son to get an education. Those magic words got our boy back in school.

Other magic words I’ve encountered:

For the parents of children with behavioral or physical needs in the US, for those being drowned by medical bills, and needing extra behavioral, nursing or helpers:

“Home and Community Based Waiver Program”

(Basically this is supplemental health insurance that covers the extra stuff that you just can’t juggle and that normal insurance can’t handle.  Many states have several of these programs to meet multiple needs and it’s best to look into this early as they often have wait lists.)

For the poor mom’s out there getting grief over testing their babies’ bilirubin?

“I would like it documented in my child’s chart that you have refused to test my child.”

From the Mom of the teen in high school with needs going unmet as the school asks that their young adult with memory issues and fatigue be their own advocate:

“Long-standing history.”

And as my granddad always used to say, “Kill them with kindness.”

Truly, there is a time for everything. Some situations (like a life/death ER visit) might require a squeaky wheel very much communicating the urgency of the situation, or firmness and confidence.  Others require gentelness and compassion, eye contact, a smile.  Most require some level of transparency – who is motivated to go above and beyond for the person who acts like they don’t need anyone?  Everyone sure could use some more kindness in their life, some words that build up.

I don’t know the magic words, really. I don’t know what my kids need to hear tomorrow or how to forge through our latest pressing challenges…but I do know who to ask.  The author of all things might surely delight to whisper the right words into his child’s ear, right?

What magic words have you found to open stubborn doors?

Special needs or no, days mostly come with their own obligations and challenges, but this one was different.

We didn’t even start getting ready for church until 20 minutes before the start.  The girls dressed themselves.  En route we changed our minds on which church to attend, and even then we were *on time (by my standards)!  VICTORY!  We went through a car wash in a car that FIT through the car wash.  They squealed with delight!!!  Then there was a fast-food lunch and play in the play-place for…pretty much forever, sans worrying about how to keep one child from feeling excluded and sad. There was ice cream. We took the dog to the park, no diaper changes, no personal hygiene needs.  I cut their hair.  These wild and free girls loved every bit of it, and perhaps they loved their unencumbered momma’s presence too.

It was amazeballs, with a side of guilt.  So very incredibly easy!  Too easy?

After my c-spine surgery last month, today I felt like a prisoner on the loose (or maybe just a hermit in the light of day), unsure of whether to enjoy it.  As to our normal restraints (or perceived ones) It’s physically and emotionally rougher and tougher to roll around with lots of extra needs.  That’s especially true when you aren’t really allowed to push that chair or change those diapers.

Suddenly remove those barriers, and guilt can’t help but rush at you, right alongside joy and ease.

[And Son. Oh Son! Should you read this please know, you are not your disability, ever. I’d be lying to say that the challenges aren’t challenging. And we’d guess that they affect you most, but, oh boy, your joy, your presence are all worth it a thousand times over!!!! You are a gift, and all of the best gifts have been hard pressed!]

Today, easy or no, my job was to rest in the joy. Yeah, the guilt was right over my shoulder, but the joy was right in front of me, and maybe that small space was distance enough.

With “our hells and our heavens so few inches apart,” this isn’t about forever teasing apart some inseparable tangle.  This is about accepting the joy set before us, regardless of whether guilt or sorrow stand close behind.  Forget those guys!

Today was a good day, a very very good day!!!

My husband, her father – he chose to spend his Father’s Day taking our boy for a night of baseball and camping. We packed all the pieces, the meds, the feeding pump, the diapers, extra cochlear implant batteries…and the camping stuff, flashlight included.

They were beaming!  As I waved goodbye, watching their blue eyes alight and their smiles spread wide, it took me back.

Fatherhood has looked different for John, and its taken some time to settle into the different.  At first we couldn’t even lay eyes on typically developing children without being torn in two, feeling every inch of the chasm between what they have and what our future could hold, our boys future.

Thankfully this has faded with time, but we still have our moments.

A few weeks ago I took the video posted below at a school event.  I can’t say that we felt like rock star parents on this particular day.  We were both worn down and feeling the gap.  (Sometimes navigating a crowd with a wheelchair and arms askew can tug somewhere deep, pulling you down.)

That’s where we were.  Bouncy castles, snow cones, and happy kids circled round and I couldn’t fight off a heavy heart.

And then. Then I heard the powering down beep of the pump and the unmistakable snaps of buckles being undone. John was taking our boy out of his chair.  He was asking the school principal if he would spot him.

Was he sure?  I hadn’t dreamed he would even try this one. How on earth?!?!  Forget my brooding.  Whispered prayers for safety shoved that nonsense out-of-the-way. The boys were doing the big obstacle bouncy thingy.

I watched, barely breathing, taking it all in, eyes welling up.  (Thankfully, my fears were unfounded.)

There is magic here.  It was at it’s full potency in person, and it carries in the pixels.  The smile, the laughter, the connection with our boy – it’s touches your soul and pulls you upward to a place where words fall short.

It may be dark.  We may be groping about.  We may not have a flashlight. Maybe we hold nothing more than a light-up-shoe bouncing shards of light about the place, but here, right where we are, we pull close and we have this.  We have each other.

___________

At 11-years-old, I was already 6 feet tall.   You heard me right, six feet.  Aside from dozens of height related nicknames, that meant one thing.  Basketball.

You cannot, may I repeat, cannot be this tall without having kids randomly proclaiming, “You are TALL!!!” and adults forever asking “Where you play ball?” and “How tall are you?” or better yet, talking to each other about your height as if you don’t hear them.  And there were the occasional folks that took it upon themselves to tell me how short or tall any man in my life should be, as if the height problems of the world lay squarely upon my shoulders.

Seriously?

(If you are worried about laughing here…go right on ahead.  I do. My tall family does.  My short friends do.  It’s cool.  These strangers didn’t impact my self esteem or choice of spouse.  No offense taken.)

It’s funny – seeing the way obvious things just flow out of peoples mouths.

But that’s not my point here.  I digress.

So maybe the height questions didn’t shape me too much, but they did eventually make me curious enough to try basketball.

I made my way over to basketball tryouts, and I made the team and played for a few years.    Today I had a flashback to those sweltering days in the gym.

Every shot, every pass, every everything was about focusing your body, your hips, your shoulders, your eyes where you wanted the ball to go, even after releasing the ball.

I spent many an hour in the driveway practicing, squaring up to the goal, how to follow through.

_____________

When the word “special” came into my life, I ran smack dab into a wall of expectations.  My goals and my abilities flew in two different directions.  It was no game, but the physics of life just didn’t seem to work anymore.

Goals are good.  Focusing is good.  But was focusing on our loss good, focusing on the heartache?  I had to do this to some extent – to work through it, to lay it at Jesus’ feet.  But what then?  How was I to learn to live right where I was. This was a new game entirely…with one common fundamental – the ball would follow my aim.

Expectations are marks we predeterime on a shifting planet.   By the time we reach them, they are rarely the right target (or anywhere within our proximity).  Things that seem so good for us are more like prancing ghosts, sirens, taking you from the real life-giving goals.

At some point, continuing to focus on my old expectations was like throwing a skeet ball across an arcade.  (Why does that make me chuckle?)

No matter if it’s the hijacked honeymoon or “special” coming into your life – the expectations (not the circumstances) are the things that make you miserable.  Expect a marriage without fighting.  Expect a baby that sleeps through the night. Expect a seamless job transition. Expect the easy path and you will always find yourself in angst.  Ann Voskamp says “Expectations are the death of relationships.”  I didn’t hear that until 8 years into this journey and it shook me.  It said it all.  My expectations had been killing me, robbing me of my joy and keeping me completely off target.

At some point when you are lost at sea, you have to throw aside the shock that this happened to Y O U and start surviving, start noticing the gifts.  Ann’s book “One Thousand Gifts” has been an in-the-water-teacher for my soul.

I did count.  I wrote down, on paper one thousand gifts.  I didn’t do it in a day or a week.  It took some serious time, but I did it.  And it changed me.  The gifts were always there, but I didn’t always see them.  Counting gifts helped me recalibrate.  Somewhere along the way, I looked up to see that I was playing on my home court (my “new normal”).   I was playing where I’d been placed, aiming my energy through the right hoop, not one 3 courts over where I thought I’d be.

On the night he was betrayed, “he took bread, gave thanks and broke it.” Luke 22:19

There is always occasion to give thanks.  Always.

Well…I guess she did have {gasp} actual blood and {double gasp} it even DRIPPED!  I suppose you should know that for 4 and 6-year-old girls, or at least these two, this means shrieking, crying, yelling and running around the house in sheer terror.  Sheesh!  You’d have thought she lost her hand!  I double checked.  Their brother may have laughed…but I kept my straight face.  The screaming was enough to keep me sober, or maybe yell myself.  Thankfully, my ever-practical-4-year-old didn’t just scream, but ran to the rescue her sister, retrieving a bandaid.

But Oh M!  Perhaps because of the pain and trial she’s seen her brother go through (one particular surgery had a very rough recovery a few years back), or hey – maybe it’s just personality, (her mom does have a little flare for drama), but whatever the reason, the girl looses almost all reason when facing, shots, cuts, pain of any kind.   My M can be down-right combative with the slightest injury, or perception of one.  I imagine this crazy train is driven by her fear of pain unstopping or worsening pain , and I know it can be dangerous too.  I wince to think of what will happen if she’s ever seriously injured.

This time, thankfully, the sight of the all-healing {ta-da!} bandaid calmed her down enough.  M took the bandaid as I pealed her fingers from the broom situated between her legs. (I’m not sure what magical game she was playing when she cut herself, but throughout the whole debacle she never let go of the broom.  I’m pretty sure she had no idea she was clutching it.)

This morning, panic took over again.  M COULD NOT let me replace her bandaid, but it was her idea.  She desperately wanted me to.  {And let’s all take a moment here to laugh at the idea of a child begging you to do something and running from you at the same time.  We would never do such a thing, right?}  So, I pulled out my mother-of-a-panicking-6-year-old-manual and I told her what I’ve been reading, you know, – about a solider being lost at sea, starving, fighting off sharks…because this totally relates to a 6-year-old-all-hands-on-deck-emergency.

It does.

I tell her how the starving men lost at sea focused their minds on other things, how panic brought them closer to death, but controlling their minds, thinking of other things, meant survival.  Surprisingly, nothing magical happened here.  She and her soggy bandaid took the story with them as they dressed for school.

Later, she came back…with a bagel (in her non-mangled hand, mind you).  She announced that I could now remove the bandaid.  I asked what changed, and M proudly told me that she knew how to control her mind.  She was going to think about eating her yummy bagel (and actually eat it) it while I took her bandaid off.  Her idea worked…even {miracle of miracles} when I had to pull out the scissors, panic was kept at bay.

Bandaid changed.

My child has conquered fear

…with a bagel.

No. Big. Deal.

And somewhere in there – somewhere in the unwrapping of little fingers from a broom and trashing a soggy bandaid…or…okay okay, maybe just now, I realize that this thing I’ve been trying to put my fingers on for weeks was right in front of me.

I watched the 60 minutes interview about “Unbroken” weeks ago.  I was mesmorized listening to the survivors talk.  One POW told of watching a local woman get beheaded on the spot – for offering him a sip water.  The same man said that – from the start you could tell who would make it on the first day.  It had everything to do with their outlook.  The POW spoke of how the more negative captives would become depressed.  As their mind gave in, their bodies followed.  They became sick and never lived much long after.

I have close friendships with many other families living with kernicterus, loss, disability, wounded veterans, life-scars…you name it.

Although these hold nothing up to the experience of living in captivity, being tortured daily – there is no helping the fear, the anger, the grief that comes with these losses, especially in the initial and intense stages of these things.

I’ve wondered how anyone would ever want to read my son’s story.

Kernicterus (this happened to my son as a result of mismanaged newborn jaundice) stories are particularly tragic as they are an easily preventable mistake (i.e. – a dollar blood test that wasn’t done, a treatment light that wasn’t turned on, a bad judgement call based on skin color) that comes with a lifetime of hardship (hearing loss, cerebral palsy, inability to care for self, speak, eat, control movement etc), and it happens all too often, sometimes with a cover-up.  I know how blinding anger is, how isolating the fear could be, even when you have no idea that it’s heaped upon your back.

I also know of the different kind of joy that can grow in the valley, when the anger lifts, when the fear is laid down (a continual process that I have by no means perfected.)  In God’s grace, I take lessons – sometimes on the hillside, sometimes in the valley.

There is something in how you tell a story, how you live it.

The reviews of the movie “Unbroken” reminded me of this.   I read reviews that said things like: “suffering, suffering, and more suffering,” with “all of the suffering but none of the humanity,” and “It plays like an endless, unrelieved gauntlet of suffering, an onslaught untempered by grace or redemption.” Ouch!

But the book – I can’t put it down.  It doesn’t focus on the drudgery, the pain, but on the actual act of surviving…and this – I’m inspired by this!

Who truly lives? Truly survives?

The best stories ever written have unspeakable loss, but that’s never the end.

There is that thing, that…that thing.  What is that thing?

Does your story have it?  We all have loss, but do we survive?

How is it that we release the broom, let the bandaid come?

On 

Any kernicterus mom can tell you, birthdays can be tough, mainly because of what comes next.  There is the day that follows soon after – the day our child faced death and came out scathed…the day our children were forever changed by jaundice.

Someone asked me today how I deal with the fact that the poor decisions of health providers left my son permanently disabled (mismanaged newborn jaundice caused kernicterus, complete with a wheelchair).

What a question.  How do I?

Christine Caine spoke of how she dealt with 12 years of abuse in her past.  She reminded me how I deal with what happened.

The only thing worse than living with kernicterus for nine years would be thinking that kernicterus is the end of the road.  (Aaaand by “kernicterus” I mean the nursing stuff, the feeding pump, the equipment, the back pain, scheduling therapies and docs, sleepless nights for years, managing meds that only do so much, but I also mean THE FEAR..the fear and anger that are forever tapping on your door and threatening to erupt at the slightest medical issue or rude stare.)

I’ve spent years writing my own psalm-ish cries.  I’ve cried in the shower.  I’ve mourned the loss of my boys abilities (in Sam’s Club and in private). …but that’s not all.  I’ve repented in dust and ashes…because I just don’t know the whole story.

He’s still writing this one…and it’s bigger than kernicterus, bigger than me, bigger than Blue, bigger than our family, …and I’m pretty sure kernicterus isn’t the end.

I deal when I learn to trust, when I stop the mad struggle against the pain.  Fighting only makes it worse.  (and by “fighting,” I mean the anger, not advocacy)

When I surrender, when I lean in, when I count the good things that stack up higher than you’d imagine (especially those exquisite ones that you can only see from the corner)…that’s when I really “deal” with what happened, that’s when I am fully alive.   It’s truly amazing, this grace!

So on this day, at this time when I was minutes away from that final push, from meeting this Blue eyed boy with the smile that lights up the world, on this day, I give thanks for my boy, for his life, and for the creator that isn’t done creating…I celebrate my boy’s life and I push on!

For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10

• living in 5 places in 4 weeks (or 6 depending how you count it)…with the dog,
• the arse through the glass thing,
• no nursing help for weeks,
• forgetting medical formula,
• the thorn in my flesh that this left arm is, tapping me on the shoulder every time I wrap a diaper round, buckle a strap, prep dinner…
• getting a ticket 2 days ago
• trying to sell the house back in North Carolina
• the thousands of decisions about renovating the new place
• paving pathways for the boy in tough places
• the delays that will have us out of our home for weeks yet
• and the STRESS that comes with keeping a marriage and fam running on shifting sands…

It’s nothing but God’s grace sustaining.  It’s his miraculous hand holding, in the ticket being dismissed, a friend providing formula, sleep returning, a house to stay in, family to help…

…and there it is – I look down and see the white puddle.

Is that an audible hiss in the air, as I deflate?

The creamy milk lies in drops between the wheels and the shoes.  My boy is walking round, exploring in his gait trainer (a walker thingy), and it’s formula on the kitchen floor, dripping down the leg, pooling in the sock, soaking my boy’s shirt.

And it’s enough to make me crumble.  “Maybe things aren’t so amazing.”

It’s a reminder – even his little piece of independence is dependent.

Just a 1/2 turn of a tube and the food pumps ON him, rather than inside his tummy.   …and I suppose it’s something else to clean, and somehow it’s much more – a reminder of the thing that is so much a part of us that we don’t see it – that my boy can’t eat, can’t walk, can’t speak, all because they didn’t test the super yellow babe …but STOP.

Before the balloon has let out it’s last breath, I plug the hole.

This is warfare too.  A battle is being waged here, for my soul, for joy, for home.

In this move, in the mega, in the minutia that feels mega…I can be at home, I can wipe the mess, I can kiss my boy, and I can grab hold of the joy set before me.

I choose joy.  I choose wonder.

I choose to celebrate the sunrise of that smile on my boys face, the giggling girls, the beds we have to sleep in, and the hands of help, the formula that we almost didn’t have.

Thanksgiving is the pathway to HOME, the pathway to the Father.

When my own children whine, I feel further from them.  When they are blind to the ice-cream, and complain about the sprinkles, it’s hard to want to take them for another treat.  I need them to learn to see the first gift before I can give more.  …and I know that if I let them keep whining, I’m only teaching them to be miserable.

I choose to dwell in the thanks, to speak to my heavenly father about the thorns, but not to whine, not to forever be dwelling on the puddles.  I choose to see the lush gardens all around me, one thanks at a time.

The war will always wage. The wonder and the puddles will always stand, side by side.

Let’s wipe up the mess and play, shall we?

Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.

Psalm 100:4

Better is one day in your courts
    than a thousand elsewhere;

Psalm 84:10

You might just get to have the most beautiful ambulance ride ever, and even get a new “Life is Good” outfit out of the ordeal, or …

you may die.

As you may have guessed, I didn’t die.

Kate and I were doing a puzzle, and I had perched on the corner of that table when after a few minutes it suddenly it gave way, and I fell through the table, sitting inside the frame with glass everywhere.

sorry for the gory pic!

My poor husband was just trying to get a break, a rare nap.

My not-playing-around yell for him had him front and center in no time, taking in the bloody mess.

There he was, looking stupefied. How?  How was it that my highly trained medic didn’t seem to know what to do!!  And surprisingly I had time for a few sarcastic thoughts to run through my head.

…so then, (I can be a tad bit bossy) I started commanding him to tie my son’s pj’s around my arm.

As it turns out, the guy is smart.  He knew better than to respond to the first blood he saw without  first making sure that I wasn’t more critically wounded.  …and how I fell through 1/2 inch thick glass w/o severing a vein, an artery, a tendon, slicing into an organ – I DO NOT KNOW!)

Warning shot across the bow, God?  Miriam must learn to not sit on a table while doing a “Doc McFluffy” puzzle!

Poor Kate was terrified.  How could a doc McFluffy puzzle go so wrong? M was concerned…about her own micro cut.  Can you blame her?  She had a drop of blood, like a whole little bead!

Blue was worried but holding it together, but in no state to run out the door (it would take an hour to get meds, diaper on, feeding pump etc ready and get everyone out the door. )
Long story short, the guy I married has smarts.  He called 911.   I then had a beautiful ambulance ride 60 miles up the beach (while I prayed I wasn’t taking up resources that someone else needed more), lots of stitches on left arm where some muscle was cut and right thumb where miraculously vein and tendon were all exposed but not cut.

Hours later I walked across the parking lot, all bandaged up in bloody pjs to join my fam for lunch.  (The brilliant hubby man also decided to entertain the kids nearby with food, rather than expose them to the worst germs the OBX could serve up!  Another pat on the back for that man!)  But back to the walk across 2 parking lots with fresh stitches, a splinted arm, and stained clothes…  Nothing to stare at here folks! …not the zombie blood stained mom, the 6ft+ parents, the service dog, the cute kid w/ CP, the 9ft+ van, the loud wild little self tattooing girls…none of it.

I then got some new duds at “Life is Good.”  Ya’ll know this whole thing was a plot to get the clothes, right?  

But the name?  How perfect is that?!  (It may sound wrong to you, but seeing that look in my husband’s eyes, knowing he could have lost me, that my misplaced rear could have radically changed life, I did and do feel that life, that God, is good.)

Now, you should know that the next day I kept accidentally calling them “life is short” clothes –

also true.

Back to the beach.  What better to do when your day is hijacked and you are now 60 miles from the rental house?  Go to the movies! Get fro-yo for dinner!

Lifting, swimming, showering, the beach…they all became challenging – you know, like, for the first time ever I couldn’t play and help the kids, so I had to just like, sit there and enjoy myself, take pictures.  Torture. Sheer Torture!!!  (Seriously though, it wasn’t bad at all, especially considering how much worse it could have/should have been!)

I’ve stressed and worried about a LOT of things in life.  I’ve felt like we always got the short end of the stick for years…but now, even in our own brand of crazy….I FEEL BLESSED…blessed to be here, blessed to be a momma, a wife, a daughter…blessed to be beloved child of God…and to be along for the adventure (…and let’s not forget, I’m also blessed to have superman for a husband, he’s been proving that more every day!)

The whining happens too, but not right here, not right now, because there is more than 1 way to view a thing, more than 1 way to focus.

(I took these pics within seconds of one another.)

I know my whole ordeal is so dang interesting that you just HAVE to have a reenactment of my stupidity, so here you go!  (My kids got a kick out of it!) From now on I’ll take my dad’s post-event advice.  I’ll keep my arse off the glass…and praise God for the things that make me slow down and savor the blessings!

Remember the feeling?  Maybe in your geeky middle school years?  …glancing around for a seat, being the new one.  The panic that took your breath away as you saw nothing but seats taken.  Fight or Flight!  It kicks in as you wonder, “Is there a place for me?!?!”  “Is there a seat for me?!?!”  You debate throwing your lunch tray aside and running for the hills, or at least that one hill with the football field.  Or maybe you developing your own FANTASTIC coping mechanism that transported you onto a tropical island.  You did, didn’t you!?!  Well, not all of us are as advanced.

I always thought “seat taken syndrome” might die with the middle school days?  In the volumes in my library of unuttered assumptions, I did.

It happened again this weekend, and it’s happened 100’s of times since wheels were put under my boys feet. (Why, oh why, can I just shoot straight? For those un-flowery-worded-peeps – THE KID IS IN A WHEELCHAIR).  I don’t have volumes of assumptions on life with a wheelchair…or even pages, cause, I never went there.  But I am filling the pages in this place, and this is the GOOD STUFF folks, the stuff that builds a life of meaning!

Okay, so back to what it means to “roll in.” This weekend it meant rolling into a crowded room for dinner theater, seats spread stadium style in 3 rows that each stepped down, the stage below. Although there were enough vacant seats, none of them were on the main level that we had to stay on. (I say “had to” with a chuckle b/c I am married to a man who will CARRY A WHEELCHAIR UP AN ESCALATOR.  Don’t call the cops though.  He does it out of sheer love with NO BOUNDS and I don’t know what I’d do without the boundless dreamer of a man!  …and I do rein him in a bit, so I wasn’t about to let him park the wheelchair on a row of stairs.

We walked round the room, the 6 of us, our little 2 mermaids with painted faces, the pirate in the chair, the service dog that everyone mistakes for a pit bull, and John and I both a couple of inches over 6 feet.  #nothingtolookatherefolks!  But honestly, I don’t even know if people do stare.  I’m a mom on a mission. I charge around the room looking for a spot.  The panic that used to choke me on first sight, I knew how to push the monster down.  The teary eyed retreats from movie theaters, doors shut in our face, the minutes that felt like hours, trying to find a spot at a crowded luncheon with un-accessible aisles, office parties…they are training me to pause the panic.

The kids show was loud, the laughter filled the room below us, as we walked round the bowl, looking for some opening, some place, ANY place, to see.   360 degrees and no opening.  The panic resurfaces, and I shove it down again.  “There is no place for us, but we must WAIT.  Be still and WAIT.”

We stand behind some folks and listen to the show, smiling and enjoying this wild crew that we six make.  One minute later two twenty-something girls offer us their seats.  We park my boy next to the girls and park the mermaids rears on the bar stools beside him.  My soul smiles.  They saw.  He saw.  I knew that the column blocked my boys view, but I talked to him and he watched his dog and smiled wide.  A minute later, the guys to our right were getting up and coaching us through the moving the chair in the spot that their stools had occupied as they pulled them back, angling my boy just right to see the show.  My soul smiled WIDE.

This place that made me want to run for the hills, the place of seats full and people staring?   When I smiled, when I shoved panic down with prayers and trust – trust that I was loved, that I had a place at the table even when all seats were taken.  When I dared wait and trust – HOPE and PROVISION sprang before me.  In the stillness, in the circling, in the smiling, in the thanks giving  like spring after a long winter – they arose.

It’s taken me 8 years to get here, but I am here, and although our circumstances haven’t changed so much, my attitude has, and it makes easier, it softens the hinges on doors, it makes it easier for people to see me when my anger and grief aren’t so heavy around me, it makes it easier for me to see, to wait, to have faith that promises WILL be kept, all in good time.

There is a place for you, friend.  You may not see it, but if you can be still.  If you can wait, you will find it there in the quiet.

Be still before the Lord and wait patiently for him; – Psalm 37:7

My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. – John 14:2-3

Psalm 23

photo credit

Cracking-bursting-glass everywhere.

I cringe to imagine.  Does he cringes still?

My baby brother had been hit by a car while crossing the street on foot!  The car had been going 50 mph with no headlights at dusk!  This happened in the first weeks of his freshman year of college.

{Having a precious friend and her boy both in the ICU across the country has promoted me to dig up this unpublished piece I wrote when my family was in crisis. It’s a ROUGH time, when a loved one or friend with an uncertain future ahead in the hospital.  Emotions fly high and we often have no idea how to help.  Having lived on both sides of crisis, I share my experience and thoughts in the hopes of helping others.}

There was a critical piece of time where I wasn’t able to hear how my brother was doing. It made me frantic! I wanted to post on Facebook for the world to pray for him. I wanted to call 10 people, I wanted to be there, and more than ANYTHING, I wanted to know he was okay.  So many things ran through my mind. And truly, I think it was easier for me to spin my wheels and worry then it was to be still and pray. To really pray – to pray in earnest, to plead with God, thank him for every breath my brother had been able to pull in and out – to pray that there would be more.

I’ve lived on several sides of the hospital experience.

My life was altered when at 9-days-old, my first-born went through a nightmare that was beyond my imagination.  Since that first ICU stay with my son, we’ve done:

middle of the night ambulance rides,

surgeries with unmanageable pain management, 

911 calls,

Driving to the ER,

inpatient for weeks at a time,

airlifting, 

home health nursing and much more.

I’ve had babies, three of them. I’ve lain in a hospital alone and I’ve had visitors.

There we’re days when I wish they would come and days I wish they would leave.

I slept an empty hospital room for 10 days while my son was in the ICU next-door,  I stayed in Ronald McDonald’s, I’ve stayed in hotels. I stayed in hotel nearby so we could do 10 appointments in a week with a baby that’s body was so traumatized that sleep, eating and travel were all excruciatingly difficult.

But this time was different.  

My baby brother – a man of 18 is the one in the bed.

I’m the visitor.   

My parents were the ones to wrestle with health insurance consult with doctors figure the rest out. 

I can’t quite describe what it’s like to see an 18-year-old go through horrific pain.

He is one of few men who will be able to tell his wife that he knows what she feels like when she gives birth.   

He had shattered bones in his leg, metal rods sticking out everywhere, and the pain was unbearable, unbelievable, unmanageable.  I saw him having to endure what no man should go through – in a roomful of people.  

I took me back to having babies (w/o meds) when the slightest noise in the room made me feel like I couldn’t do it. Touch made me falloff a cliff into panic.  All I wanted was for my husband, and only my husband to be by my side, not touching me, not speaking but they’re loving me and caring for me without actually doing anything.

I have just arrived, my daughter and I just traveled seven hours to be there for my brother and my parents.  I wanted more than anything to be there for my brother.  

But I knew better.  

At that point, my months in the hospital, my experience with my own pain – I knew.  

I knew that the best way to support my brother was to GET OUT,

to clear the room, and let my parents take turns supporting him in the room through the pain. I saw my brother for just a few minutes this weekend, and my siblings did the same.

It wasn’t easy.  It was like sitting on a bed of nails, but it was best, best for him, best for his healing, and best for me to truly exercise the act of being still.

While I couldn’t support my brother directly, I was able to support my mom.  To get her a hotel room, to make sure she got a good night’s sleep IN A BED, to take her to lunch, to let her play with her granddaughter, to go to the grocery – that was my mission.  And in doing those things I believe I did more for my brother than I could have in spending the weekend in the hospital.  Helping my mom feel refreshed, just might have helped him quite a bit.

His re-barb HALO (it wasn’t really rebarb, but man was it crazy to see metal rods emerging from his leg!) – it’s gone now, and but for a few scars, you’d never know my brother went through the whole ordeal.  The year off school, the hospital bed in my parents living room – they have vanished.  He is back in school and the crisis has vaporized.

______________________

From my reflections and our experiences I offer these tips on how to help someone that you can’t help much – someone who is in the hands of God via the doctors and the massive concrete living breathing things called a hospital.

All crisis varies. Your friend may be in a coma, or may be paralyzed, or it may be an infant, or a child or adult unable to speak.  While I can’t address every situation, I do try to share a few things I’ve learned.

FIRST THINGS FIRST

PRAY BEFORE YOU SHOUT.  If you are not the parents or closest relative or friend to the person, the one who needs to be on site, drop down on your knees. Pray. Don’t call everyone you know first.  Don’t put it all over Facebook first. Get on your knees.  Plead with God on this person’s behalf, think the almighty that they still have breath in them and pray for his will be done.  Must you value someone else’s prayers over your own? Pray before you call the prayer chain.  Seeking Him first will give you eyes to better see how to help. You can then discern whether that prayer or status update will just be spreading news or actually offering opportunities to pray.  

I always want ACTION in emergency mode, but sometimes that urge can hurt the person that you want most to help if not preceded by thought.

VISITING

There is a time to visit, and there is a time to give space and privacy. Be sensitive to the difference.

• Always ask.
• Depending on the situation it may be a good idea to ask a close relative of the patient whether they’d like visitors.  They may know, and you can avoid hassling the bombarded caregiver another question.
• Realize that, especially for adults or older children suffering trauma that personal hygiene and basic things like urinating and having bowel movements can take considerable amounts of time and privacy and can be very difficult with lots of visitors.  (go ahead, call me rude for mentioning it, but it is an essential need. Waste elimination is a serious part of our life.)
• Allow close family to do their job. Unless the patient has requested that you be there, or the family often the best thing you can do, although perhaps the hardest, is to offer to drop things off for them, support their family at home, and be still and pray.
• They may need help MUCH more down the road than in this moment.  Going to the hospital to visit makes us feel like we’ve DONE SOMETHING when we feel otherwise helpless, but the truth is that the days and months after the spotlight vanishes might be when they need you most.

IF VISITING

• Unless you are the parent guardian caregiver/responsible party or spouse of a person laying in that hospital bed, you should always offer to step out of the room when the doctor or nurse comes in the room.

HOW TO HELP

• LIMIT QUESTIONS.  Try not to bombard them with questions, but listen and show support. When they’re ready they’ll tell you what they want. (They are juggling MAJOR decisions and won’t be able to consider the little things.)

• REMEMBER THE CAREGIVER. Don’t forget about the closest family that’s having to live in the hospital, the parents or the children of the patient.  Think about what you need if you had to rush off and stay somewhere for 10 days with no warning. Offer these things rather than trying to come stay for long periods, especially if this is someone younger.

• Offer food and errands. Ask what they need from Walmart or if you can go by there house and get them clothes or take care of their dog. Think of something specific and ask.  If this an extreme emergency they may not be able to perceive their own needs.  Think of what you might want or need if you were away from home in crisis and offer that thing.

WHAT TO SAY

• Realize, that most of what comes out of your mouth is meant to comfort YOU and to give you some reassurance that everything will be okay and that you can go back to dealing with your life. Life is uncertainty. Your words and your perspective will not take away their pain. and just expressing concern and letting someone know that you’re there is often what’s most appreciated.
• Timing is everything. Words of encouragement and stories of people who’ve triumphed, while nice, can actually be very insensitive.  Even stories of people who’ve triumphed over similar things are often not received well in hospitals. Here’s why.  When trauma is initial, especially if this is something that is not fixable, there needs to be time to grieve. To grieve the loss of that ability – or the pain and trial that will be necessary to regain it. Rushing in to tell someone how great things can be down the road, can just serve to make him feel like you don’t understand the gravity of the situation.  It can be a failure to empathize. As if you have moved on and won’t allow them the time they need to process what has just happened.
• Giving a book, is not a bad option. I am a huge fan of books like CS Lewis’s, A Grief Observed (yes, books on grief do apply to newly acquired disabilities) and Streams in the Desert. But do realize that these books may sit on a shelf for days months or years.
  • I have many books that were given to me when my son was first injured. In some cases the time was not right for me to read those books till years later, and when I did read them the time was right.
  • You may think that they need to read your book right now, but God’s timing and prompting are perfect.

ADVICE

• While some advice is warranted, avoid advice if possible.
• Unless something is life-threatening or serious, don’t speak it. More voices in confusion when someone’s already trying to sort out things can just add to stress exponentially.   So avoid giving advice on the little things.
• If you really think it needs to be heard, say it.
• If unsure, run it by someone close and see what they think.

FOR CAREGIVERS

• If you are the friend or family giver that takes the sidekick role, you will need to remind yourself that being dependent is hard. Realize that your loved one may not be asking for everything they need because they don’t want to bug you. So, whenever you’re hungry you should offer food whenever you reposition yourself, you should offer to do the same for the patient.
• Find ways to ask about what they’d like without bombarding them with questions.
• Find balance.  Too helpful can be smothering and failing to be thoughtful or making them feel like a burden can be very oppressive.
• If you are worried about money or insurance or how things will work for them, go to another room to make those phone calls if you can.  The injured can very easily feel like they are a burden to you.
• Realize that God is allowing this and has purpose in this.  Seek Him in the Bible and prayer.
• Be willing to give them space and quiet to process all that has happened to them.
• Adjust per personality.We all need variety. If you have other family clamoring to be by their side, ask them if there someone else they would like to take a shift as their companion.
  • If they are really picky about how they like their sandwich made, you will need to ask about the specifics.
  • If you know that they’re not picky, don’t ask them about every drop of mayonnaise or mustard or where they want their napkin.  Be intuitive.
  • There’s a lot to process and any question you can spare them is a HUGE help.
• Be willing To step away and take care of yourself so you can better take care of the one you love.  This also can help other family members and friends that are close feel the comfort of getting to love on the person that was injured/is suffering.  My husband practically had to drag me out of the hospital.

Have you lived through crisis? What advice would you add?

Well the roller coaster has taken de-railed, not for me, but for a dear friend that is close to my heart and 1,000 miles away.

If I told you all of the story, it would be like throwing water onto a metal sheet.  It just couldn’t be absorbed.  The human heart can only take so much.  {But please do hang in there though.  I need your help, so hear me out.}  She’s lived through the same unbelievable tragedy of kernicterus with her firstborn Zach 10 years ago and ever since.   Zach has it a bit worse than my boy with super tight tone, multiple pneumonias, hospitalizations etc.

Then, a couple of years ago Vicki was speaking for picK and had her first seizure (and it was no little one – 2 grand mal seizures).  The seizures nearly took her life.  They did take chunks of her memory and greatly altered her life).

Her boy, Zach, has had horrible GI issues for the past year that had worsened to the point of him needing radical and immediate surgery to remove multiple parts of his digestive system including his entire colon on Monday.

No one knows how keeping him comfortable will work from here out.  Adding a colostomy bag to a poor little body with some serious tone and a severe movement disorder?  He made it through the surgery, but has been in ICU ever since with difficulties with pain management, a hard time getting rest, and multiple transfusions.

Last night, another shadow fell. Vicki had another seizure.  It was thought to have ended, but she had no memory and was completely disoriented. It never ended.  The seizure has been going on 24 hours, and she is also in ICU, intubated and on a ventilator.  The next 24 hours are critical, as they are unsure of their success in stopping the seizures and what her prognosis will be.

I can only imagine what her family is going through, and our picK families are beside themselves.

I feels as if we are watching a terrifying version of Hamlet happen to one of our own! “One woe doth tread upon another’s heel,. So fast they follow.”  It hurts and it’s hard to process, and it reminds me that life is not about avoiding pain so much as it is holding fast to hope eternal while in it.  

A few days ago Vicki and I were crying together and reading Isaiah 43 before Zach’s surgery and I still hold to that.

God asks us to pray.

He asks that we knock.

Would you pray with me?

Would you knock with me?

During these critical 24 hours would you fast with me?  (I’m doing a juice fast.)

I can’t see beyond this moment, beyond Joseph in prison, or Job in ashes, or David fleeing for his life…but our God can, and he can bring forth beauty from the ashes, and he did with his own, (as my friend Lauren so beautifully pointed out with her own post about her heart condition.)  Even God’s plan for his flawless son involved pain unimaginable.  I can’t wrap my brain around that on days like this…but the hope that it bought me? that it bought Vicki and Zach?  – I’ll take it.  Praise God that we will one day look back as see all the pain, all the tears, as fleeting moments that better prepared our souls for joy eternal beside the great I am!

Let’s seek him together for Bryan and Vicki and their boys Zach and Caleb, shall we?

Lets link arms across this nation around the world for a family in need of intercession.

{Below are pictures from a better time, a year ago when we were together and updates follow.}

For CaringBridge Updates: http://www.caringbridge.org/visit/VickiZachDornbos2

Update 4/18/14:
I was able to talk with Vicki on the phone tonight.
Let me say that again, I was able to talk to Vicki on the phone tonight!!!!!!

Is that amazing or what!?!?!  The woman is well aware that she now is a living miracle, to have come through such a mega seizure so well!  She does have her setbacks, and Zach does too.  They will need plenty of time to recover, BUT they are both HOME and celebrating Zach’s 10th b-day!  The colostomy is tough and Zach will need a second surgery, but overall they are just so darn happy to be home and alive and so so so very thankful for the tremendous help of friends and family through this tough time!!!

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!
Can I get an Amen?!?!

 

We read there.  We snuggle our kids there before bed.  Then we have our nights where we sit there, bustling away on our laptops, kids tucked in bed, the dog cuddling between us.  Never enough time, we miss each other – so. easily.  But I want you to know: I haven’t forgotten you.

In my short and desperate little prayer time today – I remembered you, not just our boy, of the dog or the girls, but  Y O U, the man holding us.  In the midst of counting my worries and failures with God, you rose in my mind.  My calculations took a better form – the ways that I am grateful for you, grateful to have my babies in your arms, grateful to be held by you.  The clouds of worry dissipated into a smile.  I need you to know that – that you and those baby blue’s of your make me smile, even when you aren’t near.

I’m tempted to kick myself for not lifting you up in prayer more often, for being too lazy to lift that watering can over the soil that our relationship grows in, but that is the path of defeat. I’m glad I’m not alone with my bundle of needs.  There is something beautiful in linking arms, the load heavier and lighter all at once.

And I suppose I need to share in on my blogosphere, because there needs to be balance here.  Marriage matters.  Faith matters.  Jesus matters.  Sparrows matter.  Justice matters.  Things?  Things are the catalysts and couriers. They only matter in so much as they can bring us closer in the hand-off, remind us that we aren’t alone and that we matter. These souls we are raising matter.  Friends and interaction matter.

You and I – we matter.

Here’s to getting my work done early.  Here’s to a porch date, you and I.

How’s about we ditch the couch tonight?  Here’s to cigars and board games on the porch, you and I and the dog.

I love you, man.  That is all.

– M

I don’t know them.  I don’t know their story.  At dinner one night, I couldn’t help myself.  I snapped this picture discretely, although I’m not sure they would have noticed if I hadn’t been discreet!  Perhaps their was a family emergency that had them desperately researching information, or they’d had a long day of chatting and needed a break …or maybe this is what their days look like.  Heck, maybe they are cousins! Whatever the case, it was ONE meal (albeit the entire meal) in time and I’m not here to point fingers.

What I am here to tell you is this: It’s easy to have marriage feel the way this looks – a million little things calling for your attention while you barely look at the face across the table.

__________________

It’s personal

…the letter, I mean.

Although I won’t share it here, I need to tell you that it happened, …and that it matters.

A few days ago, I read Amber Hane’s blog about Marriage Letters, and was inspired.  I wrote my own letter to my man, and I gave it every bit of attention that I give my blogs.  (How did I not think of this before?!?!)

In the early days of our long distance romance, writing was a key part of our relationship.  We lived for each others letters.  Each typed word slowly pulled back the curtain on who we were, how we thought, how we loved.  Fast forward 3 kiddos and almost 10 years, and the poor man is lucky if he gets a sticky note reminder!

I mentally pay homage to the idea that he is my love daily.  Glance at how my hours are spent, and you might never see it – that my marriage takes a front row seat.   Would you see it from my blog posts, social media?  I’m not sure you would.  (And speaking of first loves: my man takes priority among those among us that are human.  But, my heavenly father is my first-first-love, if you know what I mean, and much of what I’m saying applies to that relationship as well.)

Recently a sweet friend posted a note on facebook that essentially said,

“[All the status updates, pins and talk of kids and projects for our kids are great

…but what about our marriages?]”

Of course, kids matter.  Of course, friends are important.  Of course, social media has value.  …but sometimes there is nothing left after we’ve given to the things that beg the most of our attention.  And the less important things?  Those are the ones that usually yell loudest in our immediate proximity – they seem to take the cake.  They suck our time, our energy, our life…

As Franklin Covey says,

“Don’t get buried in the thick of thin things.”

While living intentionally is an immense topic all to itself, I just want to encourage you in this question:

What are you doing to love your first loves first?

For me, the division of my time may always be lopsided.  Motherhood, special needs, causes, they may take big chunks of time, but my man needs to feel my love too.  Sometimes, that just might just look like blogging for an audience of 1!

I told her that I didn’t like the dark one bit either.  (Madeline L’Engle says we adults lie when we say we aren’t afraid.  I can’t shake that thought.)  I held her tight and I cried with her, in the warm glow, light from the hallway.

A boy my son’s age, Josiah, he also had his abilities robbed of him as an infant – jaundice mismanaged and lifetime of struggle.  His smile and laughter were his momma’s center.  He left this world in his sleep 2 Sundays ago.  His momma awoke to find her boy had died in his sleep beside her.  He’d been laughing with her the day before, bringing sunshine.  And it hurts.  It hurts deep to know a mother’s heart…a mother’s heart that has already been through hundreds of emergencies, thousands of nights of real fears, no perfect answers for her boy.  He never stops being her boy.  And suddenly he is gone – her constant companion is no longer by her side, and how can a momma sleep?  Her soul, a piece of it, has left this world and the ache will never quite be dulled.  And I ache for Ruth’s momma as she has been turning the corner on her 3rd year without her girl (Ruth died much like Josiah). We cry tears as we share our stories, (mine of the beginning of kernicterus, hers of the end). And I cannot escape this pain – this reality that days are numbered and that death is unnatural – that it always leaves fractures behind.

On the good days, I forget about the dark.  Then sometimes, I blink and I’m enveloped in it.  I’m paralyzed.  I hardly know how to cry out.

Except that I become like her, my girl crying…  Except that I learn the wisdom of childhood and cry out with abandon, I will not feel that parental presence to remind me that he is light, that He is by my side (He who suffered).   He will cary me through the darkness, and in the end He will carry me to this place of eternal light, no more tears, that little bodies made perfect in lavish worship of the Great I Am.   He heals all our wounds and can give us the grace we need to make our way through the darkness.  He is my hiding place.

Psalm 23 – It washes like the ocean, over and over again, it’s words always ringing true.  Age and repetition make it better, richer.)

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.
Even though I walk
through the darkest valley,[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.

These words came 2 weeks ago, as our community grieved the loss of another child with kernicterus.  It hurt too much to publish at the time, and while I am in a better place now, I re-read this and feel that it needs to be said.  

Voice and memory need to be given for precious Josiah and all that have gone before him, Gabe, Calien, Kelsey, Ian, Ruth, Gavin, Naomi, John…their precious bodies have left this world, but their stories and their spirits live on!  (As a side note, while kernicterus is not said to shorten life expectancy, complications from secondary conditions can arise with some children.)

Who knows what vast numbers of other children join the ranks of these few I know.  Our kernicterus group only represents a small strata of children with kernicterus – these are families that have the benefit of knowing the name, getting the diagnosis (for many this is swept under the rug to avoid legal consequences or blame), access to facebook, and the research capabilities to find us.  Estimates of children annually being affected by kernicterus and or dying from untreated jaundice are in the 100’s of thousands per year.  The majority of these numbers are in developing countries, countries that have little access to screening and treatment for jaundice.  I hear that it’s not unheard of for babies disabled by jaundice to be abandoned in the bush of Africa, that as many as 20% of the yellow babies in Uganda’s largest hospital are dying (most without testing or proper treatment).  At the same time treatment options and screening tools are becoming cheaper and more easily available with innovations from companies like d-rev and brilliant doctors like Dick Wennberg.  Please join me in praying for and speaking out for these innocent children that need our help!

• You can be a voice!  

• You can support PICK!

• You can support the KCKC they are working to help improve the lives living with Kernicterus and this is HUGE to those living with this devastating condition!  They need hope!  

• You can take 5 minutes to ask WHO to add screening and treatment of jaundice to their newborn plan until Feb 28th (tomorrow).  

Join me in bringing light to a dark situation.

The mess, the unknown, the surrender that the day begs?  – I often would rather just roll over.

…and I do. I do it every day, in 100’s of ways.

Sometimes rising is surrendering, giving of yourself.

“There is no greater joy than being broken and given.” – Ann spoke these words this week as she stood in front of the Guatemala city dump and marveled at a school that her successful book had built {that God} had built in this place of utter despair.

She speaks of the discomfort and the pain and vulnerability of the years since her book hit the shelves…and the absolute unshakable wonder and beauty of seeing what God can do with that broken surrender.  I cry to think of this beauty in the broken – this surrender to the now, putting feet on the floor when the bed calls loud.

I’m chasing kids.  I’m surviving.  I’m remembering 3 Saturdays ago the chant, my chant, in the shower “worst mom ever! Worst Mom EVER!  WORST MOM EVER!”

It was toxic.  I knew it.  I didn’t hear myself at first.  When I did, I knew I had to put the brakes on…I had to turn the train around.  And yet, I was powerless.  I was defeated.  I needed grace.  All I could do was whisper a prayer.  Drops fell, and grace cleansed.  Water washing.  My Jesus loved me still and there was forward.  I could get up.  I could stand.  I could rise because HE rose.  I could give because HE gave…and I can never EVER out-give Him.

Every day I wake to the groggy desire to stay under the covers.  Today it overpowers.  I spend the first bit of the day buried under work (or the pretense of it) on the computer.

You see, part of this hard truth that leaves me frozen under the sheets of life is that I prefer being stagnant.  I prefer to hold in all that I have, all that I am – to not really share myself with my family, my neighbors.  I want to be a vessel with no outlets.  How pleasant is that?  A vessel with no outlets is a quick recipe to STENCH.   AND with nothing going out, what can come in?  Can we receive if we don’t give?

Only God knows how much I miss under the sheets of life.

My husband and I acted on impulse recently.  We did something fun and helpful for someone else.  It took us 10 seconds.  I marvel at how much hesitation I had.  How much I hesitated to share the gift.  In contrast I am in awe of the huge gift that WE received in opening our hand, taking the 10 seconds necessary and giving.

How can one hesitate

so much

to do something

so little

that pays

BIG dividends?

…because it’s always easier to stay in bed.

Today, I push away the sheets: in this computer, my phone, my mind, and I choose life.  I choose sharing.  I choose Jesus.  I choose surrender.  I choose my husband.  I choose these kids.  I choose the work he’s blessed me with in this house and in every vulnerable corner.

I remember my friends that mourn the loss of their precious children, some of them that also rode in wheelchairs, and had world-altering smiles.  I remember them and I celebrate what I have right now.  I push aside the worry, the fear and uncertainty of the future.  I do not know the number of our days.  I push aside the chants of failure, and I embrace the NOW that my God has given me.  I count the gifts and I live IN THEM.

I rise.

I change the boy, my flawlessly handsome silent boy.  I wrestle the “thing” on.  He’s getting so big I can barely move him.  I dress him.  I roll, and push and pull and maneuver shoes, socks, shirt, feeding tube, chairs on wheels, pants…all while looking in those eyes – those beautiful eyes.  I talk to him.  I kiss him and remind him that prayers can happen behind closed lips.  I ask him if he knows how much Jesus loves him.

How do you feel so blessed, even in the act of doing something incredibly humbling for you both?  I honestly feel honored to get to serve this boy.  It is a privilege to wash feet.  It is holy.

But there is no hiding it.  There is hurt too.  I feel deflated in the same instant.  My back is tired.  Stress is a heavy smog.  Is fear for the future tugging me down?  The idea that the girls asked for my help 5 minutes ago?

Friend, no matter how different our lives are or how similar, I know you ride this roller coaster in your own way, and I want to pull you in, to give you a hug and to tell you about the lessons I’m learning from babes and ridiculous stories.

A Babe’s Prayer

Oh to hear my 5-year-old bless the food the other night!!!  I won’t lie, she volunteered to pray, mostly because she had come to the realization that it was like playing freeze with the whole family.  I might have cringed had you been in the room, because her theology is all over the board at this point, and her prayers can border on are often on the bizarre side, but come on in anyway.

With tangled curls and furrowed brow she bows her head and begins with a high dose of drama and all seriousness, “Dear Jesus, thank you for this daily bread that you give us.  Thank you for this bread that is your body.  Thank you that you broke your body by dying on the cross, that you break this bread for us…”

Hubbs and I suppress laughter and smiles across the kitchen table.  But I hold my breath too, because I feel the edge of something big…some piece of the kingdom that abides in such as these.

A Ridiculous Story

Oh the flood!  In Matthew 15 I read the words again, 3^rd time for the week.  The ridiculous story – 7 loaves feeding thousands?!  And yet, this night I somehow had a different lens, in dappled light I saw the framework of the thing…and it looks like this:

Jesus sees a need, an incredibly immense need.

He informs his disciples of this need, and makes it plain that he’d like to take care of it.

They ask, HOW?????

Jesus asks them what they have.

They say, “We have a tiny pittance, a drop in the ocean.”

He says, “Give it to me.”

Jesus takes it.

He breaks it AND gives thanks.

Jesus gives it back to distribute.

They distribute the bread.

Somewhere in the surrender, in the changing of hands or breaking…IT MULTIPLIES.

The impossible happens.

AND there are leftovers.

And It Gets REAL

This is no longer someone else’s story.  This is ridiculously real.  This is my Lord pointing me to a need, in my spouse, my kids, my neighbors, in the world.

This is me saying, I don’t have enough.  I have NO IDEA how.  I am a drop in the ocean.

I ask – “How?”  And I feel it – I feel the magnetic pull, the calm request that I surrender what I have.  Sometimes it’s out of my abundance or sometimes like the widow at Zarephath.  He takes it.  He sometimes breaks it.

The same steps.  The same result. There is multiplication.

There can be multiplication in the surrender, in the obedience, in the thanks giving, in the breaking.

Answers can come wrapped in questions.

When I dwell in surrender, I cannot run dry.

When you dwell in surrender, you cannot run dry.

Let’s live on this mountainside.

For the jar of flour was not used up and the jug of oil did not run dry, in keeping with the word of the Lord spoken by Elijah. – I Kings 17:16

Dear Jesus, I thank you that you give beauty in the breaking, in the washing of feet, in the thanks, all when there seems to never be enough, when I don’t feel like I’m enough, when I have a whole lotta nothing to give (feel like). YOU are the beauty in the breaking.  You did pour yourself out as broken bread and poured out wine, Lord…only to multiply, only to extend your life to me, to all who ask.  May you give us all the strength to surrender our scraps, to give thanks for it, to give of it freely and to watch you multiply what was pittance without you.  Lord may we learn in the questions and may we learn to ask of you that you might unfold the path to surrender, to giving thanks, to giving, to multiplication, to leftovers!
All praise and honor be to you! Amen.

Working to be still.

That’s where I am right now.

I’m in over my head, it’s certain (but don’t you go worrying…it’s not bad, I promise).  The details that need to be worked out in the next few months feel more like a NASA rocket launch than a possible move (a fabulous and gigantic leap as my husband seeks to change careers, go back to school, and move us across the country).  …and I’m no rocket scientist, and there are more question marks and “if’s” than answers, BUT in all of the splendid chaos, as I abide, I hear the call:

BE STILL.

It might seem smart to work out every tiny detail of our families special needs, and I’m not saying I’m not trying to figure the pieces out.  I am, but I’m trying to do it slow.

I LOVE to be ahead of the game.  But sometimes ahead is behind.  Fast is slow…you know, like shopping for a house, 6 months before you are going to move/buy, at the neglect of family, home, self.

All the good things happen in the slow, but the work of nothingness always shouts above it.

They both call my name right now: the work of being still and the work of nothingness.  The work of being still doesn’t have the fancy ads and the immediate allure, but it quietly calls.  The work of being still calls from the journal, from the laundry room, the kitchen sink, the floors.  It calls in the children’s books on the shelves and tender curls on little heads.

The work of nothingness calls loud from my computer, from my phone, from my fears.  The work of nothingness begs me to line ducks in rows, as if!  …as if I had the power to keep them there.  It begs me to plan and expect and to treat all URGENT things (all beeps, vibrations, tones and banners) as if they were IMPORTANT.

Today, may I…

may we –

slow.  May we work in the stillness.  May we put my phone in a drawer.  May we close the computer and call a friend.  May we give the important power over the urgent…now. here. in the work of being still.  May we pray, may we abide in The Word (the best nourishment to grow stillness).

Stillness does not happen without work.  Stillness must be cultivated.  The weeds will overtake the place if we do not work to grow the stillness.  AND, not only that, when we are still, the battle isn’t ours…it’s not about our lines of rubber duckies forever being blown away – The battle is HIS.

The Lord will fight for you; you need only to be still.”  – Exodus 14:14

What are some weeds in your life?  

How are you nourishing stillness?

Share your thoughts below and you will automatically be entered in my first give-away!!!  {Purchase at my store for 2 entries.}  The winner will have their choice and receive 1 of these 4 noonday items.  Winner will be contacted via email on friday January 17, 2014 and announced on my noonday facebook page.

Floral Reef Cuff (Small), Banded Brass Cuff in (Large)

I checked facebook yesterday to find a hard chapter in a friend’s life.

The morning of thanksgiving his oldest girl, 19? with future bright, was on the road.  Only Nicole never made it where she was headed.  A horrible auto accident has had her laid up in the ICU ever since, fighting for her life, in a coma.  They were able to put in a trach last night.  No one knows what her future holds…not the neurosurgeon, not her parents, no one.

Nicole is a beautiful daughter, a girl I babysat a bit in my college days, the daughter of the youth pastor I worked with, the guy who counseled us before we were married, who would go the extra mile for a soul, any soul.  He was the one we called the night we were married, when we decided that maybe that the marriage on paper was a real one (long story).

I hurt for them.  Their story is their own, and yet somehow it mingles, it triggers my own memories, memories of the first time I walked into an ICU to say goodbye to my dear friend Stephenie, her mom touching her soft warm skin, only she was already gone.  My second time in ICU was when my own boy’s life and future were very uncertain.  And it’s heavy.

The desperation to do something, the fervor to check facebook every 5 minutes – it can eat you alive.  So today I step back from facebook and I pray.  I read Psalm 27 again and remember the Why and Until.  I enter the sanctuary.  I pray for Nicole’s younger sisters, I pray for her dad’s job (he’s a prison chaplain…and he’s one of few people I know with a heart big enough for the job), for rest for her parents, for her future, for the “Why?” and “Please no!” that rise up in my own heart as I think of Nicole, and another child, Nicholas.  (Nicholas is a boy with Blue’s condition that is now under the care of hospice, living his last days.)  Christmas is rough for so many!

Nicole’s mom wrote this morning about how this is a Christmas they’d rather skip where she hasn’t thought of gifts even once.  She goes on to say this:

We can’t skip Christmas because God gave his son Jesus to die for our sins. He put his son where I would not have placed Nicole and where I would give anything to have her snatched from. I know God knows my pain.
God has given us hope pressed down and running over by each new encouragement and each prayer that we hear has been lifted up for her.  We are holding on to God’s love and hope.  My friends you all have given us hope:  Pressed down, shaken together, and running over
We have hope in good measure because of your continued love and encouragement. Thank You

As I pray for Nicole this day, and think of the medical bills piling, I get the email I’ve been waiting for – I’m in with Noonday…in time for Christmas!  The 2 have NOTHING to do with one another, but maybe they should.  Noonday is an INCREDIBLE company that goes way beyond fair trade and they are worth reading up on, but that’s beside the point.  As I roll out this new little business, I’ve decided:

For December, I will be giving all of my commission from Noonday to Nicole’s family.

(If you place your order today or tomorrow (16th or 17th of December) in the US, you will have it in time for Christmas.)

I feel helpless, being far away, but this is one thing that we can do, one way that we can be hands and feet for Nicole and her family (and the artisans, communities, and orphans enriched by Noonday’s innovative business).  It will be a drop in the bucket, but it’s a drop worth making!

Please pray for Nicole and her family!  Prayer updates are posted here.

As for that talk with God, tears fell, water washed clear the dirt of this world.  Again I could see. We will see in full one day “the goodness of the Lord” and until then, even amidst the hurt, there are glimmers for all who will look!

I would have lost heart, unless I had believed
That I would see the goodness of the Lord
In the land of the living.

14 Wait on the Lord;
Be of good courage,
And He shall strengthen your heart;
Wait, I say, on the Lord!

…and on comes the heart drama.  There is always some trauma behind it all.  Punctures run deep behind the picture-perfect, and aren’t the holidays always full of both?

____________

I read my friend’s post today about her own fractured Christmas and I echo many of her sentiments.

This is the story of how the dog ate the ornaments,

BEFORE I made them.

With these kiddos, I’m not sure we’ve had a Christmas anywhere near what we wanted yet.  We had years where we scowled at the thing.

Oh the poor friends that dared to ask my children about the baby Jesus!  My girl gave a scrooge-ish answer “He was born to die.”  (Oh how I hate to admit that!  The story is so much more, and cultural tradition that it is – why not celebrate this great gift!)

In the years since, we’ve tried to create advent traditions.  They fizzle. Multiple books, projects and advent calendars abandoned.  We are forever forgetting just how full our hands get, and this year our hands feel fuller than ever, with many unknowns in our future.

In October when I got a copy of “The Greatest Gift.”  As I flipped through the pages, they resonated.  Why not make the pretty ornaments and talk it over with the kids each night?  (The readings are more than my kids can follow at this point, so hubbs and I read it for our own benefit and then pick points to share with the kids.)

And I couldn’t hang bare computer paper on a tree.  I needed more flair than that!   I was on the lookout for weeks.  What could I “Up-cycle.”  What material would I modge-podge those pretty pictures onto?

Then came the punctured and traumatized Literary Jenga blocks – the ones the dog ate.  They HAD to have part in this new tradition…the tradition of a less than perfect celebration of The Gift that meets us right where we are – in the broken: holes and shiny paint and all.

Tonight we told them a story (yes, we are behind, but that’s not the point) – the story of God providing a ram in a thicket when all looked lost.  And after they went to bed, somehow in the mess or myself, in the mess of parenting, in the mess of marriage and most of all in the literal mess of the house – I barely had the strength to grab the broom – to hope.  The mess never stops. Ever.

…and yet, through the millennia I hear David in a raw whisper, and I join the chorus…

My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.  – Psalm 73:26

And as the preacher man said today, “the anchor holds.”  And I think of Issac laying there with his dad ready to slay him.  Compliant.  Having faith in his father and his God…and yet I’m sure fear had to be knocking hard on his heart.  Did it feel like years? The long walk up, no lamb in site?  Piling up the wood?  Father raising knife above him? …and then there in the thicket!  God provided a ram, and with the ram a path for an entire nation – for Zion.

These incomplete ornaments with sparkle and chew marks, they give testimony that he provides.  In the glimmering lights and in the broken – He provides.

This I know, that God is for me.. – Psalm 56:9b