DBS, coming right up

 

Deep Brain Stimulation.

Almost as soon as we got the verdict of kernicterus, in those early years, I read about a case of dystonia being cured by DBS in an alumni publication.  Those pictures.  That boy with the dark hair.  I read this over and over.  He went from a wheelchair back to walking.

A wheelchair to walking.

(We’ve since learned that our case is different and this would be a LONG shot, but still worth trying for even a fraction of that, and you can read on to see why.)

We’ve been studying this option ever since that article.  This spring, as we maxed meds and began to see orthopedic issues arising, we decided that we could wait no longer.  There is a big need to fund this research and while we’d like to wait longer, our time has come.

There is no other case we can find quite like it – the cochlear implants, kernicterus, 4 leads.  Many of our questions may not be answered until we take this plunge, but take it we will.  Nerve wracking as it is, we have a lot of confidence in the amazing group of surgeons assembled on Blue’s team, and we are very much encouraged, seeing our bud Lexi go through this before us.

A close friend recently told me, “At this point for Blue, every move you take forward has high stakes.”  She’s right.

As friends offer to pray and seek to understand more about this process, here is the info. 

What can DBS do?  For a kid like Blue, this can decrease tone and involuntary movement, increasing their ability to control their own body.  Let that sink in for a second and think…miracle.

How much benefit?  In our case – no one knows.  This could be (and is maybe more likely to be) a marginal improvement, a small % benefit….but these are HUGE things in my son’s life. A 10% increase in the ability to hold something, to reach, to sit?  A 10% decrease in tone, keeping those half a dozen orthopedic surgeries we keep discussing at bay or maybe rendering them unnecessary (high tone and involuntary movement wreaks havoc on your bones as they grow)?  In short, this is a miracle.  In the best scenario DBS uses electricity to trick the brain out of the movement disorders.  We pray and believe that this miracle will be WAY beyond any expectation.

How does this work?  In Blue’s case this will mean 3 surgeries.

1 – This will be the pre-DBS surgery.  PrintEssentially it’s an MRI sandwiched between two little surgeries.  He will be under anesthesia for all of it.  The MRI will be used to map the path they will take in his brain during DBS surgery, but you can’t have magnets in your head for an MRI can you?  So first they will first surgically remove both internal cochlear implant magnets, place spacers and stitch him up.  After the MRI they will take him back to the OR, put new magnets into the cochlear implants in his head and close him up again. Maybe a few hours under, and then we should go home same day.  This date has not yet been scheduled.

 

2 – We will call this DBS part one, August 18.  This surgery is the most intense of the 3, by far.  They will spend the entire day in surgery drilling and probing deep into his brain to find the perfect locations for the “leads,” the wires that will deliver the electricity to the damaged spots in his brain.  In most patients they place 2 of these.  In Blue’s case they will be placing 4, in the VL of the Thalamus and in the GPI of the basal ganglia.  Blue will need to be awake and responsive for part of this surgery and we are not yet clear on whether he will be able to hear for this.

3 – DBS part two, September 1.  In this phase they will be installing two pacemakers/batteries/neruostimluators into his chest.  These devices will connect to the new “leads” installed in his brain and will be the source of power for the whole crazy thing.  This is the most painful (and pain management has been very complicated, to say the least, in the past for Blue).  These will go into his chest in the subclavical space.

When will this start to work for him?  We don’t know exactly when they will turn on his device, but some time in September, maybe on the 11th anniversary of his brain injury (kernicterus), how is that for timing?  From the hands of the surgeon, a great outcome would be no less from the hand of God.

dbs

This will be a PROCESS.  From here on out, we will charge batteries in our son’s chest every few days.  Appointments with the movement-disorder-specialist/programmer/neurologist will ensue.  These will typically be 3 hour long appointments and they will be intense…lot of physical effort with weird new electric current going through his brain.  Sometimes they say it feels like sticking your finger in an electrical outlet…but on the better days it will calm his body and give him more control.  It will take patience and intensive therapy for months, years to re-train the body.

Even as I say this I think of the gains Blue has made over his life, the little miracles like getting rid of the j-tube, switching back to the G-tube (stomach tube feeding a versus the intestinal ones). I think of the ways he has worked so hard to prove himself in school, over and over again. We give thanks for God’s provision in the past and we look for it in our future.

What does Blue think?  This kid.  He is by far the bravest and most adventurous person I’ve ever met (and I’ve met his father…so we are saying something here).  He knows it is no promise, but he is ready.  He can’t wait, actually, like literally can not wait.  He’s sat through every one of these appointments, including the ones with the orthopedist where we discussed all of those surgeries on the horizon.  He knows that he’s already maxed the adult dose of his muscle relaxant.  He’s more than aware of many many medications that we’ve tried that didn’t help him.  He perhaps knows more about this surgery than we do and he has hope and a lot of it.

 

 

Magic Words

I can’t remember when it first dawned on me – the way one phrase could change everything for my son.

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?

Image-1

Jaundice Did

If you are newer to the blog, this older piece pretty much explains how our world was altered and why.

——-

I’m not sure if she could see me shaking, the mom with the new yellow babe. Whether she could see my terror, my inner battle, I had to be brave. I had to put self aside. I HAD to ask.

“Has your baby’s bilirubin level been tested?”

I wish I could tell you it went well. It didn’t. She was nearly shaking herself – sleeplessness and hormones rushing into one defensive mix. It must have seemed that I was visibly discriminating against her child – labeling her baby as having something wrong. I don’t know. Our own story loomed too large.

In hindsight, I should have at least told her congratulations, or that her babe was beautiful first.

Maybe with time she’ll see that I wasn’t saying anything was wrong with her baby.  I opened my mouth to try to prevent the thing.

I can’t unhinge my jaw to tell it without my soul and my own tragedy unfurling alongside my words.

_____

My husband had just arrived home from weeks working abroad. I’d just given birth to my first child. We’d had that week at home reveling in the new life, the sleepless fog, and our own reunion.

It was too good, a bubble that would burst.

A saturday at home turned into a terrifying ER visit. The curtains didn’t hold back the whispers – “Brain damage.”

No one in the ER had paid much attention to my boy for hours, and then a number echoed.

45.6

That number lit up the whole place, all feet scurrying to him, all eyes on him. I saw fear and anger on their faces. There was no bracing myself for this. Where was that donut cushion? I had just given birth… to a healthy boy. I had just had a healthy pregnancy. All was well. was.

The journey from “is” to “was,” there is no telling how long it is.

He’s 9-years old now. Sometimes people ask, sometimes I just tell.

It happened where?

Here in the USA?

Wait. What?

Jaundice can do that?!?!

and it did. Jaundice did the thing. It put my boy in a wheelchair.

No, they didn’t roll my 7 pound baby out of the hospital in a wheelchair

…but they might as well have.

The cochlear implant, the feeding tube, the life chock full of therapies, nursing… they were yet to be seen, but the damage that caused them was done.

We had been home with our healthy boy one moment. As saturday turned to sunday, in the wee hours of the morning, we had a neonatologist telling us he might never be able to hold a pencil, speak, sit, walk, hear, and much more. The good news: this would not affect his intellect. My boy would likely be bright, trapped in a body that would be at war with him, his muscles living in rebellion to his mind – in constant motion.

After birth, we’d had been sent home from the hospital healthy. We had taken him back to the pediatrician twice. At every turn we’d been told that he was healthy, that we were doing a good job, not to worry about the bruise, not to worry about his color.

But what I didn’t know…

it nearly killed my boy.

It left a stain…a yellow stain.

and the clincher is this – it was preventable.

At high enough levels, that yellow stuff in the blood, the bilirubin literally stains the brain in almost the same spot as Parkinson’s, causing cerebral palsy (athetoid), and dystonia – movement disorders that mean he can’t stop moving…not even in his sleep, auditory neuropathy spectrum disorder, dental enamel dysplasia, impaired digestion and so much more. (He was not screened for risk factors, tested or treated as he should have been. My boy’s bilirubin level was allowed to rise to 45.6, unchecked.)

And jaundice…it can do that. Jaundice did that, and this family of 5 lives the reality of what jaundice can do, what jaundice did.

We walk alongside other families too…families that can also give testimony to what jaundice did. Kernicterus is a spectrum. Some of those affected walk. They talk. Some don’t. Many have something in between, communication that’s hard to understand as muscles of the mouth war with one another. This yellow stain can be more mild. (The form of hearing loss that comes with KI is in the brain, not the ear, so it is only found with more elaborate testing of the brain’s response to sound.)

Did you hear that?

This is hearing loss that’s not in the ear…that can go undetected for years, for a lifetime…and it can come with behavioral issues, or clumsiness from mild CP.

Do you hear this?! How many kids are misdiagnosed under other broad umbrellas?

No one knows.

A diagnosis of kernicterus often points to a potential malpractice lawsuit. Does this present an ethical concern?

This is preventable. A simple test, screening, and special lights (phototherapy) can stop the whole thing. But when these steps aren’t taken serious jaundice can be missed. No one knows how much it’s missed. I’ve served for years on the board of pic-K (www.pic-K.org). I’ve spoken for hours with the CDC, with the experts, and I tell you…

No one is tracking the condition in the USA. Sadly, pic-K receives several new members every week, and these are of the few that have the resources to get diagnosed.

A diagnosis of kernicterus often points to a potential malpractice lawsuit. An ethical concern? What if a doc isn’t sure, doesn’t want to stir up trouble?

Is this perhaps why there is so little parent education? When I went back and asked the nurses why they didn’t tell me how dangerous jaundice could be: they “didn’t want to scare me.”

I wish they had. I can testing first hand that KI is far more scary than prevention, education. How many parents have no idea why their kid was readmitted for jaundice?

Want to join us, want to spread the word that #jaundicecandothat? Read more. Do more. Check out our organization http://www.pic-K.org

As for my boy, as for our family, this isn’t nearly all of the story. This. This is where I loose my power over words. This is where my boy had a room full of teachers on the verge of tears as he fist bumped and smiled and talked with another special needs child. This is where I watch the 70 lb dog climb onto my boys lap in his chair, where I watch his sisters and he laugh together, where I watch my husband strapping my boy to a zip-line.

Kernicterus certainly burst a bubble that day…it certainly laid down picket fences. But perhaps the picket fences weren’t the best. Some days I still wish for them. But on others I remember that we are building something else. We are drawing back the curtain and illuminating a better place.

I was wrapped in those fences. I was invested in that paint, that brittle wood. As I put away those neatly rowed expectations, I put away myself…and it hurts. I throw away my fences, and I lean onto, I rest on something far better than the small confines of self.

I cannot go back.

This cannot be undone.

Prolonged grief will not help my family.

I do not, I can not live in what WAS.

I live in what IS.

I want to die knowing that I fully enjoyed the gift that my son is, that my family is, and all of God’s “good and perfect gifts.” I want to go out knowing that I used my own experience to ask, albeit shaking, “Has your baby been tested?”

Courage

DSC09795

“Courage is fear holding on a minute longer.” – George S. Patton

Last week was a tough one.  My son had “mystery pain,” which is something that can darn near drive you to tears when you have a sweet 10-year-old with a high pain tolerance and limited ability to tell you exactly what hurts.  We also went to an orthopedic appointment and got good news and tough news:  No surgery now, and we may be able to avoid many orthopedic surgeries, BUT/IF we think harder and faster about the elephant – DEEP BRAIN STIMULATION.  (Just the thought makes me wonder how to trip my own brain into a peaceful state.)

So, I go to the gym and I pound what I can into a treadmill.  (I’ll go ahead and tell you, I use the term “pound” here with a smirk.  I may see myself like that cut girl in the sportswear ad, but I’m still taking things fairly easy.)  I listen to Psalms, but after just a couple minutes I have to stop listening.  My heart jumps into my throat and I hit pause.   Words echo and I struggle to understand.

“How long?  How long, Oh Lord?”
“Why do you hide your face from me?”

_____________

I wouldn’t have missed it for anything, nor would she have let me.  After weeks of talk, the day had finally come.

In a sea of fuzzy pjs, there she was – perched in dead center, my baby in the kindergarten play.  Her smile, her tiny hands in motion, her little body dancing.  She was all I could see.  My heart caught in my throat.  How could this girl be mine, my baby, my curly-haired (and slightly frizzy) bubble of life?

I saw her – smiling, dancing, searching.  Can anyone put into words that delight and terror a mother feels, watching her child take a stage, share a skill, step out into the big wide world and dare to live?

I only had eyes for her.  She did me proud as her eyes sparkled and she danced happily through the motions, but the whole time she never stopped looking, combing the crowd to find me.  And I was there.  I was unabashedly waving and gushing, but her stage was lit.  The gym was dark.

She couldn’t see me.

Then they all pulled out their teddy bears.  My heart sunk.  Her expectant smile turned into something else.  Her arms were empty – no bear.  She didn’t miss a move.  In sync with her classmates, she did every move that she had rehearsed, but this time with empty arms.  The distance across the gym faded into inches.  I could feel hot tears welling in her eyes.  All I wanted to do was hold her.  I mentally wished us away to safety, to a hug and cuddles; she, the bear, and I.

That morning after she’d already left for school, I saw her bear on the floor.  I’m not normally the helicopter mom, but I knew this was a big deal.  No harm in saving her this time. I’d grabbed it on my way out the door to her brother’s doctors appointment, or so I thought.  But when we got to the school, it didn’t actually have it.  Apparently thinking about doing a thing and doing it aren’t the same {face palm}.  I asked a teacher, she said they had an extra for her.  Day saved.

Or maybe not.

For whatever reason, her arms were empty.  As they moved through their adorable songs, with everyone else was snuggling their favorite bear as they sang, my baby hugged the air, and kept scanning.  I could feel it – her fighting to control every muscle in her face even as I battled contortions in my own.

By some miracle, we both held it together, sometimes by a thread, but for the entire play she was searching, keeping it together, riding on the tide of those around her – because it was all she could do.  She moved along without the comforts of the plush toys in everyone else’s arms, longing to know that someone who loved her, someone who had eyes for her, was there – cheering her on.

…and I was there.  I was hurting to know that she felt so alone when she didn’t have to.  I was wishing her to believe I was there, even if she couldn’t see me.  She had my full attention, all of my love.

Hugs and tears came after.

The next day she got the schools award for “courage” from her teacher.

________

 

I imagine the refugee mothers, struggling to keep their little ones alive.  I see my friends in the ICU, holding cradling their big boys, sometimes for months that add into years.  (They have words and questions too tough to utter.)  I see a friend with heart broken, separating from her husband. I see my friend that lost her boy just months ago.  I see the momma worried about bullying.  I see my own fears about my boy’s future, the knots in my shoulders.  All of us, all of our worries, all of the uncertainty, all of the fear.  They all take the voice of this displaced king living in a cave – no place to lay his head, no idea of how many years, how much suffering lay before him, no idea of when relief when come.

There we stand, in our pj’s hugging the air and searching, searching for our Daddy, on the edge of tears. Wanting to hide, wanting to run, but front and center.  We can not run and we can’t see the one thing that we most desperately want to power us through – the smile of our parent, and we lack the comforts that it seems everyone else has.

The thing we want to hug is not in our arms.  Our Dad isn’t there.

Or is he?

Does he sit in the crowd on the edge of his seat, begging us to believe what we cannot see?  Begging us to know, to have confidence in His love, in His presence.

He is there.

I take another breath and I remember the words that made me hit that pause button, the words that come after outcry, words that I stretch forward to grab hold of, to abide in:

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.
Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

Psalm 27: 13-14

May we all have the courage we need – the courage to wait, to wait until we can see our Father.

A Day at the Park

It was day of “divide and conquer parenting.”  The boys were given NASCAR tickets (a DREAM day for them), and the girls and I had the day to ourselves.

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!!!

The Free Little Pets

She tells me the story.  I write.   All because, once upon a time a Momma prayed for a way to share her loves, her life, with her children.  …still praying this.  

Friday night I was reminded of this precious activity when my amorous child was suddenly sobbing, clinging. She would not let me go, even for a short date.  With an upcoming surgery of my own (read, “I hope I wake up” and “it’s time to do the things that really matter, like shoot the breeze individually w each child.”) and her brother’s needs often taking the forefront, I was reminded that she needed this time…time to be free.  

So today I took her on a lunch date and remembered – sometimes fairy tales are born out of tears. 

If you like following the twists and turns from a 7-year-old mind, read on.

Once  upon a time, there were a dog a cat and a mouse.  We must tell you, they were very close friends, and they knew that no matter what happened, their friendship would keep them alive, and in the meantime, they’d have fun.

They played and they played and they played, until the big bad animal came and squeezed them until they found themselves stuck in a ice cold cube.

Now this was quite the predicament.  How were they ever to escape?  No problem.   They were resourceful.   They licked themselves out of it.  As it turned out – it wasn’t ice after all but a massive sugar cube.

Would you believe that next, they found a magical cave?  The cave itself spoke, shaking the ground around them and saying, “Prepare to enter the cave of your least greatest fears.”  They looked at themselves with jaws open wide.  In whispers they confirmed – this was the cave of their dreams.

They left the cave to go to a castle filled with candy and jewels.   First they ate all the candy…and we do mean all.  Then.  Then they lived in this castle of their dreams, free and happy, forever after.

Meow. Woof. Squeak.

By Emmie and Mom

photo cred - neoatarama.com

photo cred – neoatarama.com

Unfurl

The Story of Us: Intro

The very first time I saw that face I both wanted to punch him and kiss him.  I did neither.  Although.  With that grin?  I’m not entirely sure that he would have minded either…or both.  He stood in his worn “Kansas” sweatshirt, staring off the balcony, watching me drive in, teasing me.  I’d been lost and driving for a couple hours and was about to pee my pants for wanting to finally meet him!  I. had. no. patience.

And then – that smile, mischievous and warm. His pale blue eyes, almost turquoise, grinned more than his mouth.  I parked and walked up to him, unsure of my footing for the jitters I had inside.  The ocean breeze swept by us both and I’m not sure it’s ever let go.

We were pen-pals before we’d ever met.  Our meeting was perhaps as random as it was far-fetched.  Or not.  Different areas of the country, different careers, no common denominators, except one.  (Thanks for the intro, cousin!)  We’d been writing for a month when we met.  I think I jumped out of my chair when I first found out that he’d be in Florida.  I said, “maybe” when he asked if I’d come see him.  Maybe.  I had gooseflesh all over.  I wasn’t going to go out of my way to meet this guy, or was I?  I didn’t sleep that night.

To describe our dating days, I think I need to look up every synonym for electric. Sleeping, eating, everything was up-ended.  I remember nothing so much as the buzzing giddiness that I felt, all the time.  It was the most torturous and lovely time of my life.  We fell hard and before I knew it, the pieces of our lives were rapidly rearranging themselves with the speed of embryonic cells, splitting, merging, replicating, a mess of the old becoming the new.

I got his first email in Janurary 2005. The first sentence made me laugh aloud in my tiny pink apartment in Jacksonville.

I already was on alert that this homeschooled-bad-ass would write, and I wasn’t looking forward to it.  How could anyone fit that bill?  Anyone?  He’d just be another guy. …another guy I’d need to push away.  I had my defenses ready.  But he came in a door that I didn’t know I had.  “Hi, I’m 6’2.”

Wha…..?

Really?  Who does that?!  Who introduces himself like that?

This guy.

And just like that, prayers I’d uttered since my teens, were being heard, their answer grabbing hold of me wether I was ready or not.

Within seven months of meeting, I’d be his wife, throwing a stick of butter his way in the kitchen.  He ducked.

Thankfully he didn’t only talk about his height!  We discussed favorite books, beliefs, our histories.  I knew his mind before I ever saw his 6’1″ frame.

Our wedding night he leaned over and whispered in my ear, calling me his wife.  Beneath our booth at dinner, he ran a hand up my leg.  I promplty slapped it.  “I’m not your wife yet!  You can’t call me that!  What are you doing?!”

“But you are.”  And I was.

Buried in the logistics of his upcoming time away, a move, a new job and wedding planning, I had not taken time to notice that we were pretty much accidentally eloping.  But this…this is a thoroughly ridiculous chapter all to itself.  The whole wedding thing takes a little explaining.

We wed in a jail.  It’s not likely to be whatever crazy thought you might have.  Neither of us have been incarcerated or have a prison ministry.

Our honeymoon was hillariously awful.  (Just plain awful at the time.)  The whole thing was thwarted in more than a few ways.

We thought I might be sterile.  (Despite the time John had to spend away for work, we quickly learned that I wasn’t.)

Just before our first anniversary, our son’s story began. Perfect and cherished, he was born without issue, and yet he was robbed.  The most basic of newborn medical care was neglected.  At 9-days-old our boy, was simply robbed of his abilities to eat, speak, sit, stand, hear, sleep, while being left with a very bright mind inside.

That night in the hospital, the tears nearly swallowed our faces.  As we waited for the elevator to the ICU, the nurse clumsily told us that it was good that we didn’t have any other children.  I know what she meant, how she meant it well.  But her words? The thought?  All the air went out of me.  There would be no other children, not with this broadsword over our heads.

But there were.  There are.  2 girls.  Curly haired and vivacious, they fill our lives with more spirit than we can handle and they indeed are a part of our cup flowing over.  3 kids in a little over four years.  My body might still be recovering.  But they are getting older, much too fast.

There are days when I crumble, and where I have little enough oxygen for myself, let alone my love.  And there are days and moments when those baby blues still capture me, where I remember how we’ve been reconstructed as one.

Our story, it’s not a sad one.  Sadness is only one flavor in a much larger, very savory, dish.  On the pages, or rather in them, we cry and we laugh, and we live…between botched plans and broken expectations we have found life, a very full life with some strong flavors.

9818_10151953244732125_1363838420_n

On Father’s Day: Defining Special

When he was looking for his flashlight, she offered him her light-up-shoe.  Surely that would do the job!

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.

A Special Decade: Square Up

I’m rounding off a decade this summer.  A decade of being a mother and of being a “special” (fancy, huh?) one at that.  Over the next few months I’m going to share a few thoughts on what I’ve been able to see in these past ten years.

___________

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.

 

Follow

Get every new post delivered to your Inbox.

Join 1,094 other followers

%d bloggers like this: