Update: What Was Actually The Matter w/My Son

First - I want to thank you all for your prayers and thoughts and for my son.  I'm beyond humbled by the overwhelming response to what was essentially a "dear diary" post.  You guys are amazing.  Seriously amazing.  And I mean that :)

Next - I want to tell you the good news!

A cardiologist at our local childrens hospital confirmed that the chest pain he was having after his hockey games?  Totally not cardiac.  No restriction of activity necessary.  No follow up appointments.  No more deductible charges or copays.  In his beautiful accent and somewhat gruff bedside manner, he reported that it is "not da heart".

I immediately knew what that meant.

Reflux.  He has reflux.

And, while GI stuff is still "stuff"...it's nothing he can't get under control with a little dietary modification and a little medication and a little maybe-stop-eating-jalapenos-why-don'tcha.

So today, as we wrapped up the weekend by swinging through our local walmart in search of dress shirts that actually fit for an upcoming trip, I couldn't help but giggle at him the whole time.  He was so carefree.  Smiling.  Laughing at the more trendy clothing on the racks, because he's a very old skool kind of guy...as evidenced by his nifty pair of wingtips.  Humming and singing a song that was stuck in his head.

This song:




No wonder he was so carefree :)

There’s no space that His love can’t reach

There’s no place that we can’t find peace

There’s no end to Amazing Grace

My Son's ER Visit, Sunday Night Gameplans, and Galatians

Last week, immediately following my son's first week back to physical activity (a.k.a. dek hockey game), he started with chest pain and a heart rate that could best be compared to...dub step.  Several hours after his game, he started to feel a little better.  Rather than take him to the hospital, primarily because he was feeling better, I decided to call the doctor first thing in the morning.

She didn't really have much to say except, "take him to the hospital if it happens again, unless you want me to order tests."

Kay?

This week, immediately following my son's second week back to physical activity (a.k.a. dek hockey game)...the same thing happened.  So I followed the doctor's orders and took him to the hospital.

:::Sidebar:::

We've been through so many years of doctor/hospital stuff, he and I.  We had a great conversation about that in the middle of the night as he waited to hear his test results and whether or not he'd be staying.  He really just wanted his bed, but he couldn't yet lay flat without discomfort.  He did say that the gurney was much more comfortable than he thought it would be and turned down offers of warmed blankets and refreshments.  He didn't want to trouble the nurse.

When I looked into his face, he was really just an overgrown version of the toddler who sat very still on each hospital gurney and doctors' table so many years ago.  His gaze fixed on...me.  Gauging whether or not I doubted the medical team, so he'd know if he should doubt them.  Gauging whether or not I looked scared, so he'd know if he should be scared.

Me? Scared?  Nah.  Because the only time I was scared for him was in 1999.  And that's when I found out that God was real.  Before then?  Nope, didn't believe that.

But...because I know that, and because I've told him that story and he knows that, and because we are surrounded by SO MANY friends who focus their prayers and kind thoughts on us, there's no reason to be afraid.

:::Sidebar finished:::

The end result of his hospital visit was...his EKG and xrays came back fine.  We're to follow up this week with doctors, because there is something going on.  They were just ruling out an emergent situation.

So it's Sunday night and I find myself sitting here, working on a game plan for this week.  Ya know, which 'son calls' should be made first over my lunch break.  Will I even bother with the ped, or go straight to old faithful Childrens Hospital.  I'm not one to play.  I think we all know what I'll be doing.  I'm looking over our checkbook.  Taking a peek in the pantry.  Asking the husband if we can make it another week without ordering heating oil.  I look over at my son, knowing how far the Lord has brought him, feeling a sense of absolute peace with whatever may come...and find him staring at his electronic device with a look of sadness on his face.  I ask him what's wrong and he says that his friend is going through a time of sadness, stress, and disappointment.  He explains ways that he just wants to fix it, but knows he can't.  He decides the best thing he can do is pray for his friend and ask God to comfort and bless them in this time of literal "ugh".

Amen.

Just as so many are doing for him...and he doesn't even know it.

We all battle something, right?  But?  We all have each other.  I thank God for that.

It doesn't mean things will be easy.  It doesn't mean they'll always go the way we want them to.  But it does mean that we can get through it, whatever "it" is.


Bear one another's burdens, and so fulfill the law of Christ. - Galatians 6:2

MS = Why I Don't Commit to Stuff

I love serving others.

Serving others and volunteering is a blessing and not just to those on the receiving end.  I think we can all get with that.

But.  I also have an "energy bank".  And over the past-almost-15yrs, I've gotten pretty good at knowing how to "budget" something for which you have no steady income, nor consistent expenses.  What's my secret to managing my energy bank?

There isn't one.  It's day to day.  The only successful management of my energy bank is to do the things I absolutely must do (get up, go to work, come home) and leave the other things to be sorted through after those 3 have been accounted for.

There was a big event planned at my kids' school.  Emails and notices came around weeks ago with bunches of opportunities to smile and socialize and serve and bless others as they went about the itinerary of this great day.  I was chomping at the bit!  Countless times, I began an email to those in charge.  "I can help!"  But, I never actually sent any of them.  It's as if ms froze my index finger and simply would not allow it to click the mouse.  I told myself that...if it was meant to be?  It would be.  I would wake up on game day with at least some energy and tiny measure of strength.  I also told myself I would not feel guilty about it if I didn't.

That's something I've also been working on for the past-almost-15yrs ;)

Today was game day.  I woke up to a beautiful sunrise!  Obnoxious birds, scream singing with elation!  Our horrendous winter has finally given way to a burst of spring!  I had a nice conversation with my husband before he left for work.  I had a nice cup of coffee placed in front of me.

I could do this!!!

When suddenly, and I'm talking pretty suddenly, something like a weighted blanket washed over me.  I picked my coffee mug up, drew it to my mouth, and...just tasted warm liquid.

Ugh.  Looks like today's an "I can't taste stuff" day.

I told myself...that's okay!  I don't need to be able to pass a taste test to go smile and socialize with a bunch of people!  I told myself to go to the shower and wash the blanket off.  After serving at the event, I would come home and take my kids out for breakfast.  Yes!  That's exactly what I would do...

But.

When I got to the top of the stairs, that voice came into my head.  You know what it said..."if you lay down for a couple minutes, you'll feel a lot better."

Lies.

Four hours later, I woke up to a beautiful, sunny day.  Birds still screaming with elation.  At some point during my slumber, my kids had opened a couple of windows to allow the fresh, spring air in.  And started laundry.  And did the dishes.  And cleaned the kitchen.  And looked at me with smiley faces and said, "Good morning, mom!  Didjya sleep good?"

Yeah.  I did.

"Do you want breakfast?"

Yeah.  I do.  Sure.

My plans = wake up early, go serve at the event, come home, wake my kids, take them to breakfast.

MS's plans = wake up early, punch Tina in the face, send her back to bed, render her day useless.

What really happened = wake up early, get punched in the face, get sent back to bed, wake up to find that I was actually the one being served, give giant hugs to my kids, and spend the rest of this beautiful day with them.

My "energy bank" may be kinda low, but my blessings are innumerable :D

Mac Arthur Park - a story about a cake

Yep.  That's the best title I could come up with.

I'm sorry in advance.

****************************************

My husband turned 44 last week.

And there's something you should know.  My husband?  Loves his birthday.  And he doesn't just love it.  He L.O.V.E.S. it.  In fact, he could best be compared to the camel in the commercials.

"Know what's in 2 weeks?  What's in 2 weeeeeeeeks!  Honey.  Hey kids.  Guess.  Guesssssss what's in 2 weeks!"

All I could think was...really?  Do you want me to rent a moonbounce?  Cotton candy machine?  Wooden yard animals proclaiming, "John's 44!"

Really?

But what he really wanted, aside from attention, was his annual chocolate-cake-with-peanut-butter-icing.  Homemade.

Just the mere word "homemade" deducts about 10 points from my Energy Bank.  

As the days wore on, my husband's countdown changed.  "What what whaaaat!  8 days til my birthday!" and "5...5...5 days til mah birthday!" and "3 more days, 3 more days...til what, you ask?  MY BIRTHDAY!  YEAH!!!"

Guess what else changed by the day?  My...presentation, if you will.

We're having extreme weather, and you all know how much MS likes extremes.  About as much as I like my own birthday.  I found myself dragging through each workday.  So mentally exhausted.  So physically vibratory.  My legs gave out while I was walking through our local grocery store in search of the perfect lunch to the point where I had to seek stability at the salad bar.  I took that to mean my perfect lunch was at the salad bar.

Let me tell you what makes people stare.  A woman dressed in business casual, holding onto the salad bar railing with both hands, trying not to fall into the food nor smash her face into the sneeze guard.  People stared, then walked away...muttering things.  Yet all I could hear in my mind, through my obviously embarrassing moment of lower extremity instability, was my husband's countdown to his 44th year.  "What what whaaaaat!"

:::gotta be kidding me:::

By the time we were at Birthday Eve (again, really?), I had nothing left.  Not physically.  Not emotionally.  Simple tasks, such as emptying the sink, wiping down the stove, and sweeping the floor, were no less daunting than running miles and miles in the sweltering heat was during my sporty days.  It didn't help that I reached saturation with my husband.  Every towel of his I picked up off the bathroom floor and every dirty dish of his I loaded into the dishwasher made me hate the idea of baking his cake.  In fact?  I came to hate the actual cake.  I began to run scenarios in my mind of baking the cake, sitting it behind my rear tire, and backing over it.  Hey honey, what's that in the driveway?  What what whaaaat?

Cake.  That's what.

I decided not to.  Cake did nothing to deserve a Yokohama tire print down the center.  Plus, I'm really trying to be a Proverbs 31 wife.  Nowhere in those scriptures is it revealed that the "wife of noble character" marched her donkey, in a stomping motion, across her husband's birthday flax...loaf?  No.  I would ask the Lord to forgive my horrible, cake destroying thoughts.  Create in me a clean heart, and renew a right spirit within me.  A nicer, more patient, more gentle me.  The me who wants to glorify You with everything I have.  That woman does not drive over food.

Finally, the birthday came.  I woke up in the morning and felt as if my entire body, complete with vibrating legs, stabby chest, and squeezing head, weighed 600lbs.  I dragged myself from my puffy cloud of swirling blankets to the coffee maker, to the shower, to the closet, down the stairs, to the car, and to work.  I had a great day :)  I then balanced our checkbook, remembered stuff I was sure I'd forget, got laundry started, and felt like I'd experienced several victories all at once!

But I didn't make the cake.

My husband came home and looked on the counter...but it was not there.

He opened the microwave...but it was not there.

He peered into the refrigerator...but it was not there.

"I'm sorry.  I didn't make your cake."

To which my husband stopped for a moment, looked at me in order to attempt to figure out whether I was being snarky or about to burst into tears.  The answer to that was simply "yes".

I had carried the guilt for days.  I'd argued with myself in that ugly way that I do.  I told myself it was ridiculous for a grown man to be so excited about a random birthday.  I told myself that he needed to get over himself.  And I told myself that I didn't care about his cake.  But then, my good self surfaced.  It's not ridiculous that he was being joyful and silly.  He works very hard for us.  He never asks for anything but that stupid cake.  The stupid cake I truly did care about, because I care about him.

And anyway, MS is stupid.  Not cake.

Enter tears.  Enter Donna Summer's song from my childhood.  Someone may have left the cake out in the rain.  They may never have that recipe again.  But at least they baked it in the first place...which made me cry more.

Fast forward a day.

My son has this wonderful, amazing, beautiful friend.  And she loves to bake.  And she bakes really well.  And she came over.  And you know what?

She and my son made the cake.  The cake that's half gone.  Or half full, depending on how you interpret a cake plate.

This time, my tears were those of gratitude.

I stood at the sink, washing their used dishes and utensils, replaying their laughter in my mind, giving thanks to God for a pair of 14yr olds who would rather do something for someone else than have actual fun in playing a video game together.  They were sitting at the kitchen table, kinda just...hangin' out...with me.  In that moment, I realized that baking his cake together and being in the same room as stabby me was "actual fun" to them.  All I could do was shake my head and smile through the tears.

To some, it was 'just' a cake for my husband's birthday.  My kind, loving husband.  To me, it was an obstacle I could not seem to overcome in the midst of overcoming everyday life.  But!  Those kids came to my rescue.  Sort of like the railing at the salad bar, but far less awkward.

Well done, kids.  You are appreciated.  Like...you don't even know :-)

Happy "Sweet 16th", Beautiful Daughter

Happy Sweet 16th to the most...

Wow.

I'm having trouble with the huge listing of adjectives, because I start typing and they sound like I'm quoting the fruits of the Spirit.  I guess I actually am.

What can I say about my Bean?

Christ-like.  Every adjective I type falls under that.  Loving, caring, kind, compassionate, resilient, selfless, incredibly hard working, just...amazing. And beautiful.  And smart.  And...amazing.

It's not easy being a kid in this house.  These kids have experienced some rather unflattering, possibly worrying, borderline frightening moments where their mother was (okay, 'is') concerned.  The awkward word salads, Olympic-sized falls, days of post-shot side effects, and pseudobulbar roller coaster rides.  Those are just the highlights.

It's not easy being my daughter.  She's grown up in the shadow of a mother with holes in her head, and a brother who's had a rough handful - maybe 2 handfuls - of years with his health.  There were times she's felt overlooked.  Ugh, just typing that brings tears to my eyes.  If she only knew how often she was at the forefront of my thoughts.  All the lengthy drives to my appointments and studies...and to her brother's appointments...I wanted nothing more than to be home with her, sitting with her, reading to her, playing games with her.  And all the times I'd choose to go to the rehabilitation hospital's chapel to read and pray (instead of clip coupons and gossip with the other moms) while my son was receiving treatments...and the times I took their picture with me so I would have the courage to inject myself with medicine that was making me horribly ill - she was foremost in my thoughts.  My oldest 'baby'.  My beautiful little girl.  Sure, I had told her how much I loved her and wanted to do things with her, you know, as I was dozing off or on my way out the door to yet another appointment, but I always wished she could truly know my heart.  I would whine to the Lord and explain that it...all this health stuff...wasn't fair for these kids.  None of it.  Not fair.

But God...

...has made Himself so visible and real to her, occasionally through those hard moments - maybe 'especially' through those hard moments - which I had determined to be "not fair".  She has a scripture for every occasion.  When the going gets rough, and it certainly has done that, she seeks refuge in the Word. She is an example.

That's what I could say.  She is an example...of Christ-like living.

She's also a quiet leader who envisions herself in a ministry position.  She prepares Bible studies and devotionals with a peaceful smile that she probably doesn't even realize she's wearing as she works.  I suppose it speaks to that verse in Philippians about the peace of God, which surpasses all understanding, guarding hearts and minds in Christ.

That peaceful smile :)  God has done - and will continue to do - incredible things through her.

And she's my Bean.  I can't measure my love for her, because no one's ever come up with those sorts of words.  Not even me - in my most intricate of word salads.

Happy Birthday, Bean.  You are loved beyond words...even made up ones ;)

Neurology's Funny 'Til It's Not - ramblings about my son's concussion

My son has a concussion.

Know how?

Laughing.  That's how.  Apparently, someone said something funny on the bus + he laughed so hard that he threw his head backwards + the steel beam that borders the glass windows = concussion.

This happened about 4 weeks ago and he hasn't really seen a whole lot of improvement in the headaches, the emotional roller coaster rides, the confusion, even the slight measure of pseudobulbar tears.

Wait.

Can we call it pseudobulbar if he doesn't also experience the intermittent laughter that us MSers know so well?  Meh.  Maybe not.  Maybe it's just 'tears with no label'.

I dislike labels anyway.

As I sat and watched him complete a neurological exam - much like those I did, faithfully, every 6 months...until my doctor retired and I decided I would also retire from those appointments - I got teary.

I remembered his early years and alllllll he'd been through.  The horrible prognosis he was born with.  Didn't help that he sustained a head injury after that prognosis.  Helped even less that he had an allergic reaction which produced seizures and neurological short circuits and, eventually, lots of labels.

The therapies were intense.  The endless 'social stories' exhausted him.  But, by God's grace, years of his relentless work, and a pediatrician in disbelief...those labels were removed from his chart.

My inner voice said, "this is not that...this is just a concussion...and he's fine...so stop it."

But I couldn't *not* see his much younger face as he looked to me for approval immediately following each trick the doctor asked him to perform.  Those glances helped me to exchange misplaced emotion for...the game face.  He's no stranger to being asked to perform tricks to show his brain function, just as none of us in this forum are.  He was prepared to do whatever she asked of him and to follow it up with a casual "did I kick that in the face or what!" approval seeking glance toward me.  Until he didn't kick it in the face.  The dreaded "heel/toe walk down the hallway with your eyes closed" trick got the better of him.

:::thud:::

"I'm okay!"

Yeah, he was okay.  But he was also kinda scared.  Because this faulty neurology serves as a reminder to him of yesteryear.  I figure that's what prompted him to ask me - straight up - if this means he's going to end up back where he was, having to go through therapies?  And, if so, will this time be different?

My answer:  I don't know what this is gonna look like, but God does.

So what's a mother to do when there's nothing she actually can do?  At least until his headaches subside?  And while the team of folks who helped him years ago aren't even in the country at this time, but will see him as soon as they return?

Pray.  Pray and wait on the Lord, because there's always something going on around us that's got His name all over it...if I just stop. and. look.

What have I noticed in my day to day musings?

Well, I've noticed that my son has been given something far more valuable than the information from the classes he's missing, the competition in the sports he's having to put on hold, and the fun of the video games he's experiencing withdrawal from.  He's feeling the blessing of real, true friendship and support.  Like how a friend will just...sit with you.  Because sometimes it's not about having all the right words.  Sometimes? It's just about...sitting with you.  So that you know they're there.  In your best of spirits or your downright worst.  No matter what.

That is how this time is different.  

Thank You, Lord.  I see what You did there.

...and maybe the neatest part is, so does he ;-)

There's No Crying Over Snow

When you're me?  This?

Exhausts you just to look at it.  And it makes you feel defeated before you've even finished your coffee.  Because come on, I know what this will feel like by the time I'm done clearing it.

And all of that?  Put a lump in the back of my throat.

Clutching my coffee mug as if it would somehow hug me back, I told myself that I had to get to work.  Stop it.  Go get some arctic wear on.  Get that mountain off the car.  And get there.

Winter has always been a little more difficult for me, ms-wise, than summer.  While both extremes are less than optimal, summer seems to be more of an "I could sleep. Forever" feel, whereas winter is a "stabby-pain-that-causes-you-to-jump, heightened tremors, and a double side order of visual disturbance and vibrations".

Anyway.

I was right.  Cleaning the car off wiped me out.  As all 5'1" of me pushed and dragged a shop broom across the top and sides of my car, I cried a little.  I got mad at my husband.  With every swoop, I complained to..the air?...how I shouldn't have to do this.  I carefully stepped into his giant footprints as I walked around my car so I wasn't up to my stabby-ankles in snow.  I yelled to the air, something about how I could understand him walking right past a laundy basket, but an entire car?  No.  I decided in my mind that there would be no excuse for this.  "Just wait 'til tonight when he gets home"...that's what I promised myself.  He better get ready to pack his bags for the guilt trip I was about to send him on!

No, wait!  I had just 'resolved' to be more of a Proverbs 31 wife!  I can't ruin that just 3 days into January, right?

:::wait for it:::

WRONG!  Proverbs 31 says nothing of the wife having to clear her donkey of snow before she went to gather that wool and flax!  Yep.  He's goin' on a guilt trip...

And then my musings took a far worse turn.  I told myself those awful things we say to ourselves from time to time.  "No one cares.  No one understands.  When you have invisible symptoms, you're on an island-of-one."  I was feeling ridiculously sorry for myself.  And I cried.  A little more than a little.  All because of some snow.

"Pity party of one, your table is ready..."

So I drove to Dunkin' Donuts, because I felt like I was entitled to a chai after all that snow clearing business.  My whole body was vibrating and the stabby pains I had in my face last night were cranked up to 10 and biting me in the ankles and shins.  My right eye was doing this new thing that I'm kind of fascinated by.  Each time I blinked, it was as if I had a water droplet in my eye...but I didn't.  It was just a distortion that cleared when I blinked, then would become distorted again.  Hmph.  "That's interesting!", said self.

I waited in the drive thru line with what I estimated to be...the entire town.  Finally, I received my chai and carefully placed it in my cupholder.  My hand was twitching and the very last thing I wanted to do was spill it.  I felt so happy in that moment.  I mentally subtracted a few things I might say to my husband when he got home.  I shifted my thoughts to my work day and began prioritizing my tasks.  For me, running through a mental game plan is no different than waking up and running through the physical functions checklist...do I have good sight in both eyes?  Eh, just one eye?  Okay, great!  And can I think straight?  Yes?  Great!  Anyway, at that point, I was stopped at the longest red light in town and ready to take a sip of chai.  I carefully removed the cup from the holder, took the lid off (germophobe, ms's fault) to take a sip and noticed...it was only half full.

:::::what::::

Oh no.  On came those awful feelings all over again!  REALLY???  You shorted me on the very thing I just rewarded myself with?  Someone has got.to.be.kidding.me.  Is that why she was smiling at me when she doesn't typically engage with the customers?  I'll bet it was!  And I oughtta spin this car around in the snow and go back to ask for the OTHER half of my chai.  I'll even say "please", because I'm classy like that!  But. I knew that turning around and going back into the store - in my current emotional state - wouldn't be a good idea.  I drove on to work.  Crying a little, but at least the right eye had an actual reason for the distortion.

My mind was spinning in high gear as I drove up the road toward work.  My pity party was in full swing when I noticed a man snowblowing the loooong walkway that runs along the front of our building and down a hill.  He was bundled up - the type of bundling where you could only see a bit of a nose and eyes.  The wind was blowing against him and the flying snow.  I thought it was one of the young men from a plow crew, because who else is going to be out there in the blustery winds, right?  When I looked closer, I realized it was...the boss.

For some reason, that snapped me out of my rut.  I remembered how blessed I truly am in spite of this stupid condition.  I have a boss, which means I'm blessed with a job.  And I could go on and on about how that boss is always concerned with things like...the climate of my workspace, and all the other things that working with something like ms would entail.  But he's a humble man and wouldn't want me to do all that ;)  I've been blessed with such incredible bosses over the course of having ms.  They have all been kind and compassionate.  They are not just bosses, past and present...they are friends.

The thought came to mind that my husband was also out in this weather, working, before the sun came up.  He may have figured I wouldn't be going to work this morning, which would explain why he hadn't cleared my car off for me.  I remembered him getting up at 3am to be sure he got to work on time.  He works very hard for us.  For me.  I thought of what it must be like to be him...watching me walk into stuff, drop stuff, and all that stuff ms does for me.  I can't lose sight of the fact that medical conditions can often be harder on the loved ones of a person than the actual person.

The truth is...everyone cares.  And I know that.  But what a slippery slope that sort of thinking can be.  I am so mindful of speaking positively to others, but I don't follow the same rule when it comes to myself.

Maybe that could also be a resolution?  Yes, yes it could!  And maybe I should also print out the full 31st Proverb and tape it to myself so I could refer to it often.  Ahem.

We're all in this together, ms'ers.  God bless us as we live each day to His glory...