…but they might as well have.

Thus began our journey from “was” to “is.”

It’s long. It’s ongoing, and the journey is not all bad, but it sure does take everything we have.

Today, I have the honor of sharing our story over at a friend Aprille’s blog, Beautiful in His Time.

Join me?  

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

Sometimes it’s not so easy to jump in.  And what if someone is carrying you?  And what if you can’t swim?   But…
What if he will never let you go?  What if he’s doing it for your ultimate joy?

_________________

Cardboard boxes are about to carry our things.  These precious little people are about to load up in a couple of weeks. Home is about to head out on wheels, from the sandhills to the plains.

A wild journey for this little family is about to commence, and I hardly know how to breathe.  There are challenges galore…but there are blessing aplenty too.

This wild step, the many if’s…it’s a leap of faith like nothing we’ve done before, uprooting career and home, and HEALTH INSURANCE, and a million school details, and all dwelling in dozens of uncertainties.

I don’t really know what to tell you, but I know I need to write, to relate the story and the beauty that is unfolding in this vulnerable place.  

I still dwell in that Sunday of singing with eyes closed and facing my fear of the road ahead and hearing the whisper to look behind – to see the treacherous roads HE has already carried us over.  Ebenezer.  He is faithful.  He has brought joy into what looked like a wasteland.

So I dwell in this day.  I dwell in this mess, and I relish the laughter and the silliness, and I share it with you.

In our last days with a pool here in North Carolina, the hubbs has been taking the kids swimming every night…and the funny thing is that the dog has taken to swimming to (it was only a couple weeks ago that he fell in.  In his panic and sinking it was obvious that he couldn’t swim.  As I reached in to fetch the floundering pup my son was dying with laughter!   He loves to watch this dog be silly.)

And call us crazy, but just because the boy is in a wheelchair, just because he can’t sit or speak, or swim…it doesn’t mean he can’t go under water!  He has never struggled with respiratory illness to speak of and even though he holds his mouth wide with excitement, he doesn’t choke…so he and his wild daddy and dog do this…over and over again.  And the boy is SO happy in this ridiculous surrender…in the rush of it all!  He trusts his father.

Only God.  Only God could bring us from grief to laughter.  Only God can give us joy in a life uncertain.  Only God can spring life from the seed that dies.

…and don’t get me wrong here, 15 minutes of fun and a happy attitude riiiiight NOW, doesn’t mean that I won’t have to struggle in the next 15 minutes with sheet panic about the new house closing, or this house selling, or the new schools.  It’s certain. I will panic.  I will ugly cry.
…and I will remember to look over my shoulder, to surrender my burdens, to just jump in, and to know that He will hold me fast all the while!

Our dog, when not too busy being a puppy, doubles as a service dog.  He is 1/2 Cane Corso 1/2 Dogo Argentino.

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

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.

What can I say?  The boy LOVES his dog.  Malcolm is boarding and training to become a service dog.  We visited him today.  I took this on the way home.  Love this sweet boy, always saying so much with those baby blues!

Malcolm is a 10 month old Cane Corso (with some Dogo Argentino in his blood) that we adopted just over a week ago, and we’ve all fallen in love.

A rare breed that works for our family without tons of research? {I normally research EVERYTHING to DEATH.}  …only God.

The fact that the friends that we had over to lunch the next day had extensive knowledge of both breeds …only God.

After buying the dog and realizing that the dog needed MUCH more training than we thought or could handle – finding a great obedience school in minutes of research…only God.

Malcolm is not intimidated by Blue’s wheels or his movements.  A tough dog he’s been very gentle with the kids and loves to play with Blue.  This big boy also happens to think he’s a little dog and LOVES to cuddle.  Malcolm is getting some basic obedience training along with some service dog training.  He’ll be back home in December and in the meantime we will visit.

Smiling, laughter, tears…life.

You can’t have those tears without knowing something good.

at home

at school

I battle this every day – in the middle of a room full of knock-your-socks-off-incredible-women and in the quiet stillness of  in the chaotic loneliness of home.  …and somehow, I think I’m not the only one, whose seen someone else doing something fun and thought “Must be nice!” (A great post by a friend on that here.)

I’ve just come home from a precious bit of community called “allume.”

I know how the pictures, the fun, the community look when peering out from a cage.

I also know how sometimes we stay in our cage because it seems a lot more like a cave – a shelter from the bits of hell outside, the hell of IF’s that loom large with the “different.”

Bottom line: I can’t stop thinking about my peeps.

My peeps are the ones at home, the ones that suffer vitamin d deficiency because they RARELY get to leave their homes, the ones that haven’t been to Bible study in years (but WANT to go), the ones that get hives as their car approaches a church parking lot, anticipating those damn rotten-tomato stares.  My peeps are the moms that have been asked NOT to bring their kids to Sunday School any more.  They may dress cute when they get out (and feel like it’s a lie). They may have makeup on.  They may be in an old t-shirt and look like they are strung out on drugs (when it’s really just YEARS of sleep deprivation). …or most likely they are a mix of all-of-the-above.

These.

These are my peeps.

And I know.  I know what it’s like to snuggle up with your computer and see the high-school friend celebrating an anniversary in New York City, and your best friend at a retreat, even just friends at lunch, or worse yet, other people like you – special needs parents TOGETHER…because you feel SO DANG ALONE.  SO DOWN.  SO LOCKED IN.  …and it feels like that’s NEVER going to change.

I’ve been there.

I was there 2 summers ago, the first time I’d ever heard of “allume.”  I looked at my screen with ENVY.  I was JEALOUS.  (I wasn’t ready to own those things, but they owned me.) They owned me not because I’d welcomed them, but because my defenses were down.

They’d rushed right in, uninvited…I think.

So ladies, and gentlemen living in the cage (whatever cage it is) – you – the ones that see life passing you by, this is for you.

I can’t tell you how much I wish this was “10 Sure Ways to Get out of Your Hellacious Cage”

…but I’m not a 10-Sure-anything kinda girl.

I could tell you all to go to church, that you abandon church, demand that “they” cater Sunday school around your special needs child, demand that “they” bring community right INSIDE of your cage, or that you go wheel your child into a homeless shelter

…BUT I’d be wrong.

I’d be wrong, because SOMETIMES we are called to wash feet,

and SOMETIMES we are called to LET others wash OUR feet.

Only you and Jesus can figure that one out together.

I so badly wish I could have packed you all in my suitcase.  I wish I could have been in someone else’s suitcase on that lonely summer, but the timing would have been all wrong. It would have been all wrong, because, for me, that was the time when God said, “It is good for a man to sit in silence.” and “It is good for a man to bear the yoke when he is young.” (Lamentations 3...It’s deep ya’ll!)  …and when I learned to rest in that place, and to GIVE thanks – I found joy.

It’s a step I didn’t need to skip.

So this is my message –  Listen to the still small voice.

Ask.  Seek.  Knock.

Where does He want you?

Right where you are?

Who are your neighbors?  How can you love them AS YOURSELF?

Are you in the place where you have nothing left?  He might just want you to SERVE?  It’s the last mite that makes all the difference, because

Abundance can come in GIVING all.

Is HE calling you to live with abandon?

or have you been living abandon too long?  Is He calling you to surrender, to let that friend wash your feet, to do that “girl’s night?”

Are you in the corner because He wants you to be a voice for the broken?  Did your kid get kicked out of Sunday school so you can show Jesus to those hurting you?  So that you can champion the cause of the kid that comes after you?  Or is this a time for silence?

Or did it happen because he’s telling you to move on?  Is he pushing you into a new community?  (Sometimes he teaches more in your absence than with your words.)

Is he telling you to push past the pain, to put yourself back into community?  Is he telling you to endure the hell so that you can have more heaven in your life?

Let me tell you:  Obedience HURTS….and it fills.

EVERY person in this world is BROKEN…and when you put broken people together in a place to worship Jesus…

Heaven and hell dwell under the same roof.

Precious community, selfless love, peace, patience – they are in that place.  Envy, PRIDE, jealousy, hate, (and did I say pride?) those are in the SAME place.

All of us battle with our stiflingly tight JUDGY PANTS (A great post by a new friend from allume…and yes I’m the smart%#$ that called her a “Judgy Pants” I’m just glad she’s cool enough to call me friend after I did!)

My 5-year-old has a pair of skinny jeans that render her immobile.  She can’t even bend to put her shoes on in them.  Judgy pants are these are those times 10.  They paralyze.  They isolate.  They would have us see only the perfect – not the broken in each of us….and they keep us at arm’s length from all “They don’t know.”  “They’re life is too easy, too perfect.”  “They have NO idea what my life is like.”

We want to wallow.

We want to see everything “perfect” in others and everything “broken” in ourselves…or vice versa. We rarely admit that we have much in common.

The others:  they may or may not know they are broken, but they need prayer – and prayer is the stuff that gives our life elasticity, that opens our eyes to the broken, that gives us the strength to serve when we are a mess on the floor.

When you catch yourself in those judgy pants PRAY for the one you’re judging.

• You think the sermons not the best you’ve heard – PRAY for the man to have an awesome sermon – to bring Jesus in the room.
• The girl next to you talking bad about the preacher – pray that she would have joy in her life, that He would break her in the best of ways and help her know that she is enough.
• The kid that can’t stop staring at your kid – pray that they would stop being imprisoned by normalcy, that they would learn to see souls and not oddities….and for your own bleeding heart…and your kids  – that you could see beyond your own pain to the pain within the starer…and maybe ask the kid to please look forward, and call his mom later to explain.
• The person that illegally parked in the handicapped space? – pray for them, until your own anger begins to melt – pray for the handicaps in their soul…and maybe call the ADA too. :)

Praying doesn’t mean you stop fighting for justice, for the oppressed, but it does mean that you know who’s really in charge, and where true change begins.

There are some things that we only learn after we say them out loud.   Speak truth to your heart and talk to your God – from your cage.  It will free you – He will free you.

So, my peeps:   Pray, pray for the irritatingly perfect people in your life.  Pray blessings on the people that see your child as a burden and not a living breathing soul.  Pray for the people that would rather stare at your child than experience the joy of knowing them.  And pray for joy.  Pray for laughter.  Pray for community.  Pray that he would show you when to wash feet and when to let that neighbor that always offers to take your kids wash YOUR feet.

…and dig, dig into The Word that breathes life into your existence.

If your new to the Bible, don’t expect it to be easy.  It will seem weird and ancient, but if you obey, if you persist, the dry bones may just come to life, and they may just fill your life with a joy greater than you’d dare dream.

So friends, dare to enter that place of heaven and hell that He’s calling you to.

Be brave enough to –

embrace the quiet or to step into community,

to serve or be served.

Cling to the heaven in the place, and pray away the hell.

Do it.

I dare you.

You just might find in yourself – beauty rearranged.

Lamentations 3

31For no one is cast off
by the Lord forever.
³² Though he brings grief, he will show compassion,
so great is his unfailing love.
³³ For he does not willingly bring affliction
or grief to anyone.

Joni Eareckson Tada

She wasn’t born with the cup she carries. When she was in the spring of her life, a teen, an accident left her a quadriplegic.  Who would think it – that such agony could be such fertile soil for beauty? …and yet you look at Joni’s life and you see it to be true.

She’s a very talented artist, speaker, writer, and leader known the world over.  God has used Joni and her pain to reach millions – through special needs family retreats, “Wheels for the World,” radio and TV broadcasts, books, public speaking and SO much more.  Her struggle has not ceased.  Her pain keeps pounding “like a jackhammer” and yet she has joy as it all keeps driving her to Jesus.  There is much to learn from the life and work of Joni!

Below is and excerpt from Suffering and the Sovereignty of God.  This is a quote I need to hear often!

Now don’t be fooled—that was no isolated incident. I didn’t just leave my desperation back there in the hospital. No, desperation is part of a quadriplegic’s life each and every day. For me, suffering is still that jackhammer breaking apart my rocks of resistance every day. It’s still the chisel that God is using to chip away at my self-sufficiency and my self motivation and my self-consumption. Suffering is still that sheepdog snapping and barking at my heels, driving me down the road to Calvary where otherwise I do not want to go. My human nature, my flesh, does not want to endure hardship like a good soldier (2 Tim. 2:3) or follow Christ’s example (1 Pet. 2:21) or welcome a trial as friend. No, my flesh does not want to rejoice in suffering (Rom. 5:3) or be holy as he is holy (1 Pet. 1:15). But it is at Calvary, at the cross, where I meet suffering on God’s terms.

And it happens almost every morning. Please know that I am no expert at this wheelchair thing. I’m no professional at being a quadriplegic. There are so many mornings when I wake up and I can hear my girlfriend come to the front door to help me get out of bed and get ready for the day. She goes to the kitchen, turns on the water, and starts brewing coffee. I know that in a few moments she’s going to come gliding into the bedroom, where she’ll greet me with a happy, “Good morning!” And I am lying there with my eyes closed, thinking, “O God, I can’t do this. I am so tired. I don’t know how I’m going to make it to lunchtime. O God, I’m already thinking about how good it’s going to feel when I get back to bed tonight and put my head on this pillow.”

I’m sure you have felt that way at some point. Maybe you feel that way every morning. But Psalm 10:17 says, “O LORD, you hear the desire of the afflicted; you will strengthen their heart; you will incline your ear.” “O God,” I often pray in the morning, “God, I cannot do this. I cannot do this thing called quadriplegia. I have no resources for this. I have no strength for this—but you do. You’ve got resources. You’ve got strength. I can’t do quadriplegia, but I can do all things through you as you strengthen me [Phil. 4:13]. I have no smile for this woman who’s going to walk into my bedroom in a moment. She could be having coffee with another friend, but she’s chosen to come here to help me get up. O God, please may I borrow your smile?”

And just as he promises, he hears the cry of the afflicted, and before even 7:30 in the morning he has sent joy straight from heaven. Then, when my girlfriend comes through the door with that steaming cup of coffee, I can greet her with a happy “Hello!” borrowed from God. To this you, too, were called.

To this you were called because Christ suffered for you, leaving you this kind of example that you should follow. He endured the cross for the joy that was set before him (Heb. 12:2). Should we expect to do less? So then, join me; boast in your afflictions. Delight in your infirmities. Glory in your weaknesses, for then you know that Christ’s power rests in you (2 Cor. 12:9). You might be handicapped on all sides, but you’re not crushed. You might be perplexed, but you’re not in despair. You might be knocked down, but you’re not knocked out. Because it says in 2 Corinthians 4:7-12 that every day we experience something of the death of the Lord Jesus Christ, so that in turn we might experience the power of the life of Jesus in these bodies of ours.

Do you know who the truly handicapped people are?

They are the ones—and many of them are Christians—who hear the alarm clock go off at 7:30 in the morning, throw back the covers, jump out of bed, take a quick shower, choke down breakfast, and zoom out the front door. They do all this on automatic pilot without stopping once to acknowledge their Creator, their great God who gives them life and strength each day. Christian, if you live that way, do you know that James 4:6 says God opposes you? “God opposes the proud, but gives grace to the humble.”

And who are the humble?

They are people who are humiliated by their weaknesses. Catheterized people whose leg bags spring leaks on somebody else’s brand-new carpet. Immobilized people who must be fed, cleansed, dressed, and taken care of like infants. Once-active people crippled by chronic aches and pains. God opposes the proud but gives grace to the humble, so then submit yourselves to God. Resist the devil, who loves nothing more than to discourage you and corrode your joy. Resist him and he will flee you. Draw near to God in your affliction, and he will draw near to you (James 4:6-8). Take up your cross daily and follow the Lord Jesus (Luke 9:23).

I must qualify that last statement. Please know that when I take up my cross every day I am not talking about my wheelchair. My wheelchair is not my cross to bear. Neither is your cane or walker your cross. Neither is your dead-end job or your irksome in-laws. Your cross to bear is not your migraine headaches, not your sinus infection, not your stiff joints. That is not your cross to bear. My cross is not my wheelchair; it is my attitude. Your cross is your attitude about your dead-end job and your in-laws. It is your attitude about your aches and pains. Any complaints, any grumblings, any disputings or murmurings, any anxieties, any worries, any resentments or anything that hints of a raging torrent of bitterness— these are the things God calls me to die to daily. For when I do, I not only become like him in his death (that is, taking up my cross and dying to the sin that he died for on his cross), but the power of the resurrection puts to death any doubts, fears, grumblings, and disputings. And I get to become like him in his life. I get to experience the intimate fellowship of sharing in his sufferings, the sweetness and the preciousness of the Savior. I become holy as he is holy. O God, “you will make me full of gladness with your presence” (Acts 2:28).

And to be in God’s presence is to be holy. Not to be sinless, but to sin less. To let suffering sandblast you to the core, revealing the stuff of which you are made. And it’s never pretty—the sin we housebreak and domesticate and try to make our own—is it? No. Suffering sandblasts that stuff, leaving us bare and falling head over heels, down for the count and decimated.

It is when your soul has been blasted bare, when you feel raw and undone, that you can be better bonded to the Savior. And then you not only meet suffering on God’s terms, but you meet joy on God’s terms. And then God—as he does every morning at 7:30 when I cry to him out of my affliction—happily shares his gladness, his joy flooding over heaven’s walls filling my heart in a waterfall of delight, which then in turn always streams out to others in a flood of encouragement, and then erupts back to God in an ecstatic fountain of praise. He gets your heart pumping for heaven. He injects his peace, power, and perspective into your spiritual being. He imparts a new way of looking at your hardships. He puts a song in your heart.

Blue in the pirate hat that he earned for doing a great job while mom and dad had a get-away!

My dear boy,

When I think of rearranged beauty – I think of you.  You are a masterpiece!

You are beauty made, and beauty in the making.

These hard things – these struggles – these broken things that are not the essence of you, but that surround you – they are carving out beauty in all of us.  HE is carving out beauty in all of us – and the broken shards – they hurt. This process of being made – it’s not painless.

It’s hard, not seeing, not knowing where it will all lead – but wait!

We do know.

We do see the promises in HIS WORD.

This leads to joy – joy eternal.

Do our hearts have eyes?  Do our hearts have the eyes of faith to see it?

It may seem bleary, but when “He wipes all of our tears away” – it will be clear.

He’s not done making us yet.

Will the final step will be the wiping of our tears?  Then we will see with clarity the joy that we get faint glimmers of now, the beauty made complete.

Mom

We made it out without loosing the cochlear implant…or Kate.

I had a HARD time holding back tears as John loaded B into the monster truck – mixed emotions fluttering.

Later, I watched a comedy

…and the tears wouldn’t stop!

{Crazy, I know.  But in my defense, it’s a comedy about a brain injury (50 first dates) and the soundtrack is essentially OURS.  Hubbs and I fell in love listening to those songs.}   Really I can’t spell it all out.  Sometimes there is just a break in the dam and before I know it, it’s burst.

And the bursting, it’s not all sorrow.  Happiness is mixed in too – bitter with the sweet.

These are sweet moments, even with all of the details that brought struggle.  Should I note the near loss of a son’s shoe on the carousel more than the lady that waited 10 minutes with her children to help husband get son back in wheelchair at the end of the ride?  Sweet moments!

…and then there are these 2 sweet moments to come that I’m just incredulous over:

– an upcoming precious bit of retreat with my man (not to mention the friends that are pitching in their own time and resources to make it happen!!!)  PINCH ME PLEASE!!!

– and next month an incredible conference (Allume) …and getting to room with a very special bestie!!!

For a long time I didn’t understand people calling themselves “blessed.”  It seemed presumptuous and day-dreamy, but truly to be a child of God, to know the blessed hope that comes with every once of pain, to know that the pain isn’t the end game but a part of the training, and to take in these gifts from the Father – to know that I have a Father that loves me and is working all for good, to have these moments, the smiles and these precious people in my life  – I AM BLESSED.

They did it all.  No strings attached –

they planned for months,

they met,

they designed,

and built this.

When they were finished, they prayed blessings over us and this precious gift!

I cry to think of how complicated

and impossible,

and time-consuming,

and just too big this thing was for us.

These guys made it happen in just over an hour.

Thanks be to God!!!  Thanks guys!!!

There have been more than a few times that, in my zombie-mom mode, I’ve tossed aside flowers almost as soon as they’ve been handed to me, but…

not today,

not this week.

I’ve needed someone to pinch me all week.  It’s surreal, you know, having 2 kids in school – sitting in car pickup line, cleaning my floors – SURREAL.  And if you’ve ever been to my house, you know I do not lie – clean floors are a rarity…and not just because my kids mess them up quickly (but because I almost NEVER clean.  Gross, I know.)

But it’s a transition, a nice one, where I almost feel displaced.  There are the tinges of guilt that accompany joy, but I know these are a false reality, and I pray them away.

I just want to seep in what this IS.

This morning my baby handed me this flower.  And this thing that faded within the hour, I savored it.

And it’s this balance that’s needed for the battles.  As to the battles –

if you have a child that needs help communicating or you want a glimpse into this unknown region, I’ve added a new page for you:

Voices

Filed under: Life, Living with Sp Needs, Parent Tagged: aac, alp, Cerebral Palsy, communication, dynavox, eye-gaze, how to get a computer that will talk for your child, how to get an evaluation, prc, Special Needs, speech therapy, tobii ]]> /2013/08/30/savor/feed/ 0 savor arearrangedlife savor /2013/06/03/hope-is-a-thing-with-feathers/ /2013/06/03/hope-is-a-thing-with-feathers/#comments Tue, 04 Jun 2013 00:50:48 +0000 /?p=2301 ]]> A 7-year-old kid with a bright mind trapped in the body of a spastic quadriplegic…and a mother with a love for nature.  How to make it happen?  How to explore her love or nature with her 3 kids?

This is a question I dared not flirt with.  But there has been a distant hope. I hardly knew what it would look like.  I barely dared dream.  The possibility has seemed as if it lay beyond the further horizon at times.

HOPE

It’s a darn tricky word….”a thing with feathers” according to Miss Emily Dickinson.

I’m inclined to agree.

Completely unaware, I’ve been in flight from grief to hope to joy in this journey.

ALWAYS GRANOLA

Before I begin, I should explain – I’m a bit granola.  I grew up on organic food, grown in our back yard. I love the outdoors, even if I’m never actually doing the sort of thing you see featured on an REI ad.  Charlotte Mason – totally up my alley!  Her words resonate through the centuries to me.  Learning about local plants, birds calls, wildlife, etc?  Learning how to explore?  How to express themselves?  Yes, please!  Whether my go to school or not – my main goal in their education is that:

THEY LOVE TO LEARN

AND that they have an appreciation for the outdoors, brimming over with creativity and the desire the explore and create.

What good is knowledge crammed into a child if they do not like it?  …if they don’t desire to learn?

These ideas, and the desire to create and explore alongside my children – it’s somewhere deep within me…and likely all of us.

THE DARK DAYS

I can’t quite explain to you the dark days.  They weren’t all dark.  Flitting shadows and shards of light came in.  But there was much grief.

It was a time to mourn.

The heart takes time to count loss.  AND there must be a shifting point…or the counting begins to rob you of life.  The heart can go on counting negatives to it’s own destruction, or it can switch gears and discover precious positives that can only be found in the shadows of grief.

Thankfully, somewhere along the way…somewhere on this treacherous journey, a shift occurred for me.  Looking now, you might think that I always had a happy song, but you’d be wrong.

There were days and the ER when many people tried to share hope, and it was just a feathery annoyance when I was trying to mourn.  Stories of happy people with disability were far beyond my reach.  I lived in the days of baby screaming, shaking, struggling to eat, counting vomiting episodes by numbers per hour, doctors visits by # per week.  I survived.  God truly brought me from one minute to the next and gave me some moments with beautiful friends along the way.

As I’ve paled over the years, vitamin D deficiency and all. I’ve mourned unmet expectations of how my children and I would interact, and I have adapted. …and sometimes I’ve dared hope.

I actually began to read Charlotte Mason after I had Blue.  I plugged through the pages hoping for divine inspiration on HOW to interact with my child.  I had no idea how to juggle the tangled wires of old tech that is often used in the special needs world (something I’m still working on).  (FYI, when I say I read these CM books…you should know that my definition of reading often means reading the first 100 or so pages of several books.  Who ever finishes what they start?  – not this girl!)

The SHIFT.

Now, I write to new parents, dealing with KI.  I recall the days when my boy couldn’t see, couldn’t hear, couldn’t eat, … the list of couldn’ts could fill paragraphs.

This shift, has unfolded in pages and prayers and tears and years and, one wild adaption and out-of-the-box idea at a time.

I hardly knew it was happening, and now I look back and see the pages.

Page 1 -TV

Then we discovered the TV.  I know, I know!  It sounds horrible!  HORRIBLE!  But listen for a sec.  You have a smart boy with every sort of physical of impairment and barrier between him and the world.  He cannot reach out to touch what he longs for.

So one day, “Baby Einstein” happened.  A slow progression of toys and classical music.  He was captivated!

HE COULD SEE!

Prior to that, we had NEVER seen him look directly at anything that he wanted to look at…including US.  (This, along with staring at lights etc is a symptom of cortical visual impairment.)

So this TV thing, it grew as did his vision.  It was a motivator.  Educational books on video, different engaging stimuli at a slower pace…he not only began to see, but to interact with his world!  This all began to happen around one year when the awful falling/spinning sensations that stemmed for serious issues with vestibular stability began to normalize.

As the years have gone on, the TV has been a means of engaging, motivating and educating my son.  We even did DVD home school one year and it was a huge hit…because the boy LOVES to watch TV.

2 – A Surgery

2 years later, HE COULD HEAR too, thanks to a cochlear implant!  He began to understand spoken language and laugh not just at slapstick humor, but things we did too!

After a while, with 2 typical girls watching far more TV than I would wish, educational or not, I started to despair again…just to feel a little helpless to accommodate all of my kids needs.

3 – Plopping down – without a plan

Last summer we began to venture outdoors.  But how to get around in the yard???  What could he do??  There is too much of a slope to work for the gait trainer or stander or a power chair when we are lucky enough to try one…  I felt lost.

What COULD we do?  I didn’t have the energy to chase the girls…and carry a 60lb boy in constant motion.  He couldn’t help me plant.  In a step of faith, we began to pull the cushion off the papasan chair and SIT.

What could there possibly be to see in 1/4 acre of grass?

Well…  It takes another set of eyes to see it, and they don’t always open rapidly…or at least they didn’t for me.  But bit by bit, we saw things growing, a toad, a lizard, a large bug, the feathery clouds floating by.  My boy loved the sky.

…it took being still…being willing to sit outside and hope that we could find something entertaining…nothing planned.

It wasn’t easy for me, and I didn’t do it every day, but each time we did, I wondered how I had doubted that we’d be occupied.

The Bats

This spring we discovered some bats that like to fly between tree tops at dusk and my boy and I could lay there watching them for an hour while the girls ran wild.

A Good Deal

THEN, Barnes and Noble had a book that looked like it should be $100 for $20.  I love books, and I especially love a deal.  This deal had illustrations and a built in bird call player for 100’s of birds.  Who knew that a $20 book would clue me in to an incredible gift? …a gift that had been there all along.

My husband had fed birds with my son for years, yet somehow I was oblivious to the birder within.  I loved how Mason’s schooling goals included bird calls and identification.  TOTALLY UP MY ALLEY.  But….WHERE TO START. I didn’t know the first thing.

So I bought the bird book, and it sat.  AND it sat…for months, under a stool.

One day, I finally pulled it out.  We played a cardinal call and a cardinal immediately flew within 3 feet of my son.  Blue nearly JUMPED out of his wheelchair! (He really does practically stand in his wheelchair when excited.)  I was introduced to a love of my child!

A voiceless child, had voiced his love for something.  It only needed opportunity, opportunity that evolved over years.

Now, a couple of months later, he usually chooses to sit on the porch over watching TV.  Blue is able to distinguish different bird calls.  He’s working on a field journal in powerpoint, using his communication device.  He’s spotted over 2o species in the past 2 months, and he’s pulled his mother into a little addiction too.

I’m his “binocular” operator.  Given that he cannot use binoculars, I use my camera with a 500mm lens, and together we spot birds.

We capture and release.

We share something in a way I never would have expected.

We bond.

My heart skip a beat to share this joy – to hear his voice!

And I say – YES – hope is a many feathered thing!

Thank you Lord for giving me joy in something I barely ventured hope…for hearing prayers that mixed with tears and for opening the eyes and ears of my son and I both!

I know many other tired moms.  I know a lot of tired special needs moms…one mom that just can’t take another day of cleaning up her 14 year old’s bodily fluids.  (My apologies for the gross factor…but you get the picture…TIRED.)

So, as Valentines Day awoke, so did my day – with more than a few squabbles among the girls about who did what, scratching, cutting balloons loose – the drama that makes me want to laugh and cry.

At the dawn of this day, I had the thought: the best love story’s are the William Wallace Braveheart kind of stories.  Not so much the cute ones that come with cards and roses, but the down and out, underdog ones – the epic, about-to-loose-it-all and grasping-on-with-all-you’ve-got stories!

You know….disinfecting every square inch of a bathroom, fighting for your child’s rights in an IEP for hours, spending hours on the phone with vendors and insurance companies to straighten out bills that shouldn’t exist – all because somehow there is a system error, having to rearrange your life for a lift that is broken on your van for 2 months.  It may not sound like a Braveheart kind of thing….but you know…I think it just might be.

God has this whole never-dying, never-giving-up love for us…and maybe, just maybe  we love these stories because they are meant to remind us of the greatest story ever told.

And maybe, just maybe, we LIVE these stories, to feel in our bones the depth of the greatest story ever told.

I won’t lie. I’ve chased friendship and fallen flat on my face.

She stood in judgement against a decision.  She told me that our friendship had been…an undue burden.

Knife sliced deep. 

And this, this is only one side of the story.  I am no perfect friend.  I have no filter.  I openly share thoughts and opinions.  She always seemed fine with my wild candor.  Maybe I was oblivious.  In the end – I wonder if my words hadn’t been slicing away at her.  

The timing of it all amounted to months of relative solitude.

I had forced something that wasn’t meant to be.  I was a leaf, wilting in hot sun.

Falling flat on my face – it left some scars, some real scars. It also helped me slow down.

“Let him sit alone in silence.” Lamentations 3 (the expanded passage is well worth your time!)

I sat in silence. I wept in silence, and then I sat in silence some more.

When you walk out of the ICU with a child that has been altered for life – they don’t hand you the boxing gloves you’ll need, nor do they tell you that friendships won’t come easy. Would it help?   Would it change the fact that living with special needs is often a life-long grieving process. Heck, life is a life-long grieving process…we lose things and people we love.  There is much pain…way too much pain!  

 Seeing the Invisible Fence. 

You know – the kind that shocks dogs?

I got my first glimpse when my heart-friend Molly told me that the IV pole in my living room used to freak her out. How did I not see it? Oh yeah – I was trying not to drown in the ocean of my child’s immense needs.

Another sweet friend once told me that our interaction was great for her and it had forced her “beyond her comfort zone.”

beyond.  her.  comfort.  zone.

Wait a minute! One gosh-darned minute!

My house is void of a comfort zone?!!!

Yep.

A barrier between my already-not-so-perfect-self and friends?

Check.

Now, don’t get me wrong.  These two friends are super precious to me.  I am very grateful for their honesty. They had the guts to say what everyone else felt, and that I was completely oblivious too. 

They didn’t build the fence.  They pointed to the fence that had just come over – the one that had given them the jolt.

It wasn’t them that made this hard.  It was, it is…GOD – “author of all things,” “omnipotent,” working-all-things together-for-the-good-of-those-that-love-Him-and-are-called-according-to-his-purpose-GOD.

The feeding pump, the wheelchair, the kernicterus (KI), the cerebral palsy (NOT my boy) – but these things that surround him…they are the barriers.  I wasn’t familiar with them before either.  Pre-KI, did I know how to hold a conversation with someone who couldn’t speak? I’m not sure I did.

So….there must be something bigger going on here.

In all of my oh-so-lovely whining, I remind myself of childbirth. When I hear of other special needs parents who feel like they just. can’t. do. it. anymore. …I’m reminded of the “emotional signposts” of labor.  The Bradley Method teaches that the surest way to know when the baby is coming – when the mother is most ready to give up in “transition.”  It’s not about inches dilated etc…they say these “emotional signposts” are more telling.  So, it’s when you are really ready to throw in the towel that you are closest to actually having this beautiful baby.  I’ve actually been through this 3 times, and knowing the routine, didn’t make me any less ready to give up.  I fell for it – every time.  Every time, I wanted to hang it all up…forget about the whole thing, but of course, I couldn’t! ;)

We say, “How long?”  One day it really will have all been a blink.  I remember how that hour of pushing seemed like an eternity! …but it wasn’t.

This is not eternity.  Not yet.  This is one day at a time.  One opportunity, one moment at a time.

Whether it’s wheelchairs, suction machines, feeding pumps, odd movements, behaviors, or anything that makes one different – it makes an invisible fence around them and the people near them. Only those willing to take a little jolt may pass over.

And yes, in realizing this, another layer of my denial was/is peeled back…another way in which our life is “special” in a way I never wanted it to be.

DENIAL – that thick nasty wallpaper that I’d rather leave up than deal with.  It’s been there so long I don’t notice it…and there are always more layers.

The same thing happens when the wheelchair is widened, or I buy the next size of clothes, and he’s growing into a man and still unable to sit or speak.  Sometimes it’s a twinge, other times it’s a wave – bits of grief as we grow. It happened when we got our first handicap accessible van. There was the joy of the convenience, but as always, there was the grief. When your life takes a big hit and disability settles in, grief comes in waves and stages. Ready or not, they come. Ready or not, they hurt.

George MacDonald says it so well.

Thus some of the deepest, purest wells of spiritual life, are, like those in old castles, choked up by the decay of the outer walls.

Hooray for friends that the jolts / scale the walls!!!

They venture beyond the fence/walls – they see a glimpse of the beauty and wonder of this place where my son is…this place where the little things are to be celebrated – where smiles and sounds and movements bring joy.  Even in the midst of our trials there is much to savor.

When you have a special need it’s not always as simple as reaching out and loving the people around you. Sometimes it might just not work out. You fall flat on your face here and there.

As for that silence – The special needs life can be full of isolation. We are often at places that others around us can’t relate to or understand. But you know what? – I’m starting to think that silence…maybe it’s not all bad. It’s in the silence that I hear HIS voice best, that he can come in as friend. Maybe…maybe when I’m not content with it – maybe I’m every bit the desperate girl-friend that won’t stop chasing other things that don’t fill.

Our savior was a man of sorrows. He was acquainted with grief.

He knows the pain. He knows the isolation. “Ask of Him.” He is the friend I need…the one and only and best friend to have in the silence.

The more I accept this, the more I find rich friendships blooming around me, not because I’m chasing them, but because I am more satisfied in Him.

Our church has talked a lot about outreach lately, and it has occurred to me that in order for good giving to take place I must:

• know just how good we have it – how really blessed we are
• be okay with isolation
• know that He fills and let Him
• not wait until my heart are perfect
• sometimes it takes the act of giving – to start Growing

On a hot day in the summer our squash leaving bent low for wilting. My 4-year-old asked me, “What makes the leaves stand up?” I told her, “water.”

Like a flood, conviction begged – “Living water: what does that do?”

Living water can make me able to stand – to overflow into others lives.  It fills to overflowing.

When the giving isn’t going so well…when I’m feeling depleted…when I’m feeling alone – I am wilting.

¹³ Jesus answered, “Everyone who drinks this water will be thirsty again, ¹⁴ but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.”

–John 4:13-14

Lord, this Christmas, and every day – help me to stand.  Fill me.   Help me to abide – to overflow, right over these fences!  There are no barriers too great for you and your love!

I long for simplicity.  Simple. “This is good.” “That is bad.” – Yes, Please!

But no…we all live in an ugly-beautiful complexity beyond my grasp.

__________

In the morning pre-school-scurry I read this post by Robert Rummel-Hudson, author of Schuyler’s Monster.

This resonates.  That frustration.  The barriers to voice.  The technical difficulties.  The public awkwardness.  I know those…although from our own unique angle.

Words don’t come easy for our kids.

The post hit home.  There is a part of me that finds comfort in this type of article.  It takes away a tad bit of loneliness.  We don’t live this reality alone.

My thoughts were interrupted.  Our nifty little apple TV box was not working.  Their movie was not coming on quick enough!  (Yes, movie in the morning before school so mom can shower.  Judge if you like!  I’m pretty much done with Mommy guilt over TV…or at least I think I am.  My boy can’t hold a toy or a book, but he can soak in and learn from everything around him…so when I need to get things done…yes.  TV happens.)

So back to that.  The show would not come on. Internet issues. Restarting.  Dots flashing around in circle. Waiting.  Back to menu.

In those moments, my girls were loosing it.

It was there that I remembered my “love and logic” parenting class…that you actually WANT your child to be frustrated early in life.

They say that you want to train them to deal with and overcome obstacles…to deal with the less than easy things early…so that when they inevitably come later in life, they can keep their cool and push through.   The thought being: Who wants to deal with adults that act like whinny 2-year-olds when they don’t get their way?

My girls learning patience with the TV – got it.

My boy learning patience through endless barriers and obstacles to COMMUNICATION – hmm….not so simple.

Not. Simple. At. All.

Is pain ever simple?  There can be so much pain and angst in the silence.  It’s so much more.

Does the same “love and logic” apply?  It is building something in him, isn’t it?  Everything is working toward something.  The super human amount of patience required in waiting, stumbling, and struggling mercilessly to have a voice – it’s all time in the gym that is building muscle somewhere.  Where? Muscles of character?

It may just make those deep wells deeper.

I think I see it happening.  I see glimmers of it…the beauty in the ashes.  And don’t get me wrong…they are ashes…this is brokenness…it’s not all smiles and sunshine.  The disabilities are negatives that need to be constantly added in prayer.

I don’t know what tomorrow will bring.  I certainly don’t know what the teen years will bring.  I do know there will be many more tears between here and whatever the future brings…tears of pain and joy.  Are tears ever simple?

I pray that I can see it with the eyes of faith…the “love and logic” of what the Father does each day.  I pray that my children will have eyes for this.

Pardon the repetition, but I cannot leave James 1.  It will take a lifetime to learn this:

Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds,because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do.  – James 1:2-8 (NIV)

For my gift counting…pictures mostly today!  Here are a few scribbled in the journal:

1045.  Time with hubs at Starbucks

1046.  Reading the word with hubby

1049.  Minutes at home to self!

1050.  Coffee and cookies for breakfast

1055.  The colors of autumn

1061.  The back porch

1062.  A meal at a friends house

1063.  Easy comfortable time – in that home

1064.  Fellowship

1065.  Time at the farm with my loves

You can see full size pics by clicking and then using arrows to scroll.  Thanks for stopping by!

From 40 hours a week to 0 hours a week (although on paper we still have nursing – under a benefit that does not exist [sigh])!

Rough blow. Very.  Another battle has come to my front door.

The phone call brought me to tears.  The case manager said she understood.  I told her she did not.

It seems that every day miles and stacks of paperwork line up between my son and his needs.  People in offices far away that have never laid eyes on him make critical decisions about his care on a daily basis.

In each mile, in each piece of paper, a bit of his humanity is taken away.

Now appeals need to be written, services applied for, phone calls made.  The flurry can lay me low – so low.   I cannot do it.  Not today.  (I will, just not today.)  I must preserve some piece of myself for the next fight.  I learn every day and hour that I can only do so much, that sometimes the tyranny of the urgent is just too tyrannical.  Attempting to slow.

It’s like this:

M just ran out of jelly making her sandwich and began be get upset.  But, I knew better.  I had another jar.

He always has another jar. I have confidence in this.  In this jar switching madness that life can be so full of – there is purpose.  The jar switching, the leaps of faith, the running to the cupboard over and over makes one so weary, and He gives such hope!

I take great comfort this morning in the words of Philippians 3.  Suffering the loss of things can be great gain for eternity…if we press on, if we look to him in faith, if we dwell in his word, if we bow low on our knees…then even in the ashes…the rubble of this world there is the great “gain of Christ”.  I want to “be found in Him,”  no matter what I loose in this life.

I look at these pictures and am just so thankful for this amazing child that defies the odds, and that brings such gifts into our home.  I’ve made it to 999 on my list and today is a very good day – a day full of good things.   I want to open eyes wide to take in.

This slowing down, this putting things aside to rest, has been such a gift.  I had a precious 2 hours kid-free this morning. I didn’t write an appeal.  I did not make phone calls.  I scribbled in my journal. I read.  I wrote down thanks.  With each word I wrote, I think there is a little extra dose of peace put in place to guard my heart.  Now to remember that – to take grip of it and not let go!

Each time the bottom falls out and picket fences of expectation tumble, we have an opportunity.

In every loss there is an opportunity to gain.

The ultimate jar that we take hold of will put all others to shame!

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. –Philippians 4:6-7

*I should add that in God’s great mercy, our school hired a great nurse to work with our son just 1 week before we first heard this news!  This cut makes evenings more trying (especially with my husbands night classes) and summer may be especially tough, but we’ll see.  Praying that God provides either through other means or our appeal being granted by that time.  In the meantime, the battle ensues…and some mommy time on the side, for sanity’s sake!

Last summer I wrote this:

I don’t really expect people to open doors anywhere…even with a wheelchair.

The other day, amidst a crowd of people, I opened a door for myself and my son, in wheelchair.  Before I could roll him through, several people then charged through the door I was holding from the opposite direction.  There was no end in sight.

Minutes passed.

I gave up.

I then opened another door for myself and forged through.

As my heart rate accelerated, I averted my eyes from the many looking at me.  I licked my wounds and pushed on…this is really no biggie in our world.  There are far bigger battles to fight.

And, of course there was a parking incident that made my blood boil…you know the kind where people abuse handicapped parking…making the wheelchair margins unusable?  Maddening!  Especially when it means having to back your car into traffic and then take AGONIZINGLY LONG MINUTES to load your child+wheelchair into the van…IN TRAFFIC…with people waiting…and WATCHING.

AND…there was the hotel that had the NARROW walkways.  Blue’s arms kept getting caught in the railing, as we rolled him along!

AND the other hotel that required rolling up and down 2 flights of a parking garage to access the elevator,

AND I won’t even talk about how complicated it was to get to the pool.

Needless to say…stress, crushing-oppressive-blood-boiling-stress, has come into my life unbidden.  And last summer, there was stress aplenty!

WHAT TO DO?!

On the flip side, M (4-years-old) laughed at her sister when she got in trouble this week.  Empathy ain’t easy, for any of us.

You are your own suggestion box.

I am my own suggestion box.  I must be.

I am more firmly convinced of this every year I remain on this planet:  No matter how tired or overspent you are, if you want to see something happen, you MUST be the force driving this home.

The suggestion box that is burning a whole in my heart is…

…a mission field. It’s not thousands of miles away. It’s in my backyard and it’s in yours too.  It is vast.   It’s full of minefields and high crumbly intimidating walls.  It’s also full of wells of deep spiritual beauty…of God’s terrifying goodness. It’s a growing mission field.  Numbers are added to the wounded every single day…larger numbers than you or I can imagine.

This is the mission to the people underneath the broken…the disabled…the disfigured…the awkward…the blind…the deaf…and the weary.  This is a mission to THE BEAUTIFUL, wrapped in the brokenness of this world.  This is the mission for their families.  Special needs are growing and with them is the need for real true empathy and charity…not the kind that is a handout.  These wounded millions need the kind that 1 Corinthians speaks of…the kind where giving ALL you have to the poor doesn’t cut it…that is saturated with love or it falls to nothingness.

Our faith must have the fruit of empathy or it is sour rottenness that is inedible.

We must care about others, really care, and train our children to…or what kind of education will they have.  Shall we teach them to go through the motions and “have not love?”

My children are little.  I am a child in this game.  I am even more the fool in the game if I think that I can go through life making the occasional grand-stand, teaching them true empathy with words.  No, I have to lead this mission…I have to forge through my own discomfort, push over walls of awkward and learn to really serve.

“First self teach, then child preach.” -Anne Voskamp

I must lead. If I want others to care more about my boy, if I want my girls to be kind to other children with different special needs, if I want my boy in the wheelchair to care about people other than himself – I must model it.

And this caring…it’s no easy game, our own discomfort, our own timing, or own will will stand in the way time and time again…it will stand smack in front of the golden adventure that God puts in our path – the adventure of serving others – every. single. time.

If you live in a world like me…where every search for a parking space is a chance for an anxiety attack (with your wheelchair accessible van).  Where a  motorcycle parking in handicap margin leads you to do some serious brainstorming.  (How to pull your van out into the middle of the parking lot, all while your poor child in a chair is exposed to traffic.)  Or where every doorway you roll through you have to lean over and restrain your child so that he doesn’t fling his arms out and break or hyper-extend something as you pass.  Or where children have to learn to have a one-way conversation with your child and rarely care to try.  Where empathy doesn’t come cheap.  Kids and adults alike stare and ask awkward questions.  A world where you barely get to give your children the attention they need for the battles that never cease with people in offices far away…dealing with health insurance and schools.  Somehow in the miles and stacks of paperwork the humanity of your child is lost…and you have to fight tooth and nail for there most basic needs…things that help them to eat, hear, see and sit and talk.   If you belong to my kind of world… I’m talking to you too.

Who better to help the world understand our Specialneedy world than us!  Who better to recruit people to help in this field? I know we don’t have the energy…I know we barely have any fight left in us to get that next therapy straightened out…but God isn’t just talking to everyone else…he calls you and I to be fruitful too…to serve…to serve right where we are planted.

If special needs aren’t a part of your life:

There is barren woman crying in a corner…longing more than anything for a child, while another mother has  children begging for dinner while her 10 year old sits in a wheelchair crying out in pain that she can’t identify.

There is a teen, sitting bored while an elderly woman pays for pizza delivery just to see another human face.

Dishes and laundry heap high while young single women shop to pass the time.

Just last week I squared away the kids and sat down for “some me time” and the phone rang.  It wasn’t anyone I expected.  It was someone I’d never met.  This grandmother of a child with KI sat in an ICU with her precious grandson trying to figure out what to do next.  I cringe to think of my internal response.  I didn’t want to serve.  I wanted to serve on my own terms….in the window of time that worked for me. God had other plans, as he always does.  AND THEY ARE ALWAYS BETTER…once you get over yourself.

I’m so glad we spoke and glad I got the privilege to pray for her and perspective in the midst of our newest battle…perspective of thanksgiving.  I felt desperate because I didn’t know anything about the particular issue her grandson was having…but while I prayed I thought to post it on our facebook group…and the other Mom’s that knew of treatment options were able to reach out and help her.  It was a huge blessing to see the KI community helping one another out!

I know more special needs families that have turned away from church than special needs families in church.

It’s hard.

Really, really hard.

I’ve thought of running for the hills more times than I can count and I think I always will…but I don’t want to leave.  As much as I will bear pain in every almost every doorway that I roll that wheelchair through, I must.  I cannot forsake God’s word and the fellowship of his people and I must be a part of the solution…and maybe…just maybe God put me in this gut-wrenching position so that I’d be close enough to reach out to someone else…to open our eyes to deeper truths than those that scratch surfaces and prance around picket fences…maybe there is a lot to learn in this battle and it’s better for my soul that would be much too satisfied with complacency.  So as to the others out there…the 10’s or 100’s or thousands of people within our reach who stepped out a NICU with a very different future…who is going to wrap their arms around them?  Who is going to answer the phone when they call?  Who is going to offer to watch their kids when they see the doctor for the 5,000th time?  If not me…If not you, then who?  (thank you, Dr. Seuss!)

Could it be that our (my) own pain is intended to help enable us to have empathy toward the sister he puts in our path? Yes.  Absolutely yes.  Don’t forget.  There is purpose in all things.  Whether you see it or not – There is purpose.

So this week will I:

Be willing to be interrupted?

When someone doesn’t get the door for us – find a way out of our pity party and serve?

Pray that He would open my eyes to serve others and receive the gifts in that service?

Let’s let Him teach real true deep empathy…the kind of love that comes straight from Him?

Will I let Jesus use our pain to care about someone else?  – To move beyond the selfish grief that will eat me alive (this is a continual battle)? -To care for someone else?

I want to be full.  I want to overflow.

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.  –1 Kings 17:16

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Therefore, since we have been justified through faith, we^[a] have peace with God through our Lord Jesus Christ, ² through whom we have gained access by faith into this grace in which we now stand. And we^[b] rejoice in the hope of the glory of God. ³ Not only so, but we^[c] also rejoice in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope. ⁵ And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. –Romans 5:1-5

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One of them, an expert in the law, tested him with this question: “Teacher, which is the greatest commandment in the Law?”

Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’^[a] This is the first and greatest commandment. ³⁹ And the second is like it: ‘Love your neighbor as yourself.’^[b] All the Law and the Prophets hang on these two commandments.” -Matthew 22:35-41