Monday, February 24, 2014

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!"


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. don't even know :-)

Thursday, February 13, 2014

Happy "Sweet 16th", Beautiful Daughter

Happy Sweet 16th to the most...


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 ;)

Sunday, February 9, 2014

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.


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 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.


"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 ;-)