Have you ever rearranged a room? Once it’s done, the entire atmosphere just takes on a whole new and refreshing light, even though it’s really still all the same familiar pieces, just in different spots now.  But the process of it all can be challenging and even overwhelming at times. It’s hard work and effort and takes some time.  More important than that, it takes a vision; a sense of seeing how you want the process to go, but not sure about the end product – and if you’ll like it or not, really remains to be seen.  You are forced to clean out the grimy dust and clutter; maybe in places that you hoped it would all just stay neatly hidden and out of view.  Here’s how the literal ‘living room’ of our lives became rearranged – and the though the end product has still yet to fully reveal itself, the style and design has brought us closer together.  Closer to God.  Closer to community.  Closer to each other.

 

August 2008, Valley View Cancer Clinic

“I tell you what we need to do.  We need to have a garage sale for you.” This is a true southerner’s ‘plan A’ for raising money and having a good time while you do it – well before the birth of ‘gofundme’ accounts.

I was a bit taken aback by my dear friend and fellow oncology nurse, Janet’s suggestion.  I admit it. Bills and unpaid balances were beginning to rack up.  Sam had already seen by now three ortho’s, one pediatrician, and one neurologist, with an upcoming appointment for neurologist #2.  Throw in there a CT of his head and a full spinal MRI.  Echocardiogram.  Spinal xrays.  Scoli brace. None of the tests, pokings, proddings, and  exams in the previous two years had yielded any results or explanations for his increasing clumsiness except for a scoliosis diagnosis.  We seemed to be meeting our insurance deductibles over and over, sooner and sooner, with each repeat trip to Oklahoma City.  Feeling a bit awkward and reluctant to accept ‘charity’, I went ahead and consented to let my coworkers give up their weekend to help us out.  They wanted to trade in their treasures to let me know they treasured me and my family.  Ok – we’ll do a garage sale.  I’ll play along.

Looking back, I wonder if they saw the ominous horizon before I did? Call it a coping mechanism, denial, whatever……I still didn’t think that at the time anything was really wrong with Sam.  In fact, I often saw all these doctor appointments and such as an irritation.  He was small framed and clumsy.  So what – he’ll grow out of this. His daddy loved baseball, was athletic in school – ok, so I didn’t have football material in Sam.  Big deal.  We’ll become regulars at the baseball field eventually, though it might take a while. Optimism, that’s the ticket!!

On the Saturday morning of the sale, I decided to wash off our two miles of dusty dirt roads from my minivan before I ventured over and parked it next to the girls’ shiny vehicles (which only saw glorious pavement, unlike mine). I pulled into the automatic bay, and glanced at the price to make my mommy-ride shiny and slick, even it was only for a few hours:  $7.00??!!!!  Forget that!!  It’s a beautiful sunny day, and besides, I’d feel guilty the entire time for giving into my laziness.  I backed my 4 wheeled dirt machine out, and chose a different bay. I’d save $5 bucks and just do it myself, dern it.  When I walked up to the panel to drop my quarters in, my eyes caught a white business card and four quarters sitting on the metal ledge below the dial.  Hhhmm….now I have more than enough to get the job done.  Puzzled by someone’s obvious random act of kindness, I picked up the card and felt my heart skip.  This is what I read with my eyes:  “For I know the plans I have for you”, declares the Lord, “plans to prosper you, and not harm you.  Plans to give you hope and a future.” Jeremiah 29:11. This is what I heard with my heart:  TAKE MY HAND.  DON’T FEAR. MY PROVISION IS SUFFICIENT FOR YOU.  I turned the card over, expecting to see some church’s or group’s name, advertising for more members.  Blank. No one to thank, no one to attribute this awesome reminder and tap on my shoulder to – no one except for Jesus. ( I now have the card and quarters in a scrap book. )

Fast forward a couple of weeks through the neuroloigst #2 appointment.  “Friedreich’s Ataxia“, along with some other blood tests is what she wrote on the script for bloodwork, and handed it to me at the end of our hour long visit.  I wasn’t unnerved.  She probably has the wrong suspicions, just like the others.   I didn’t become rattled until one of my sisters called me at 6:30 am the next day before work.  Through her sobs, Liz begged me, “Annie – whatever you do, DON’T look it up when you get to work.  Just trust me. Wait until work is over.  Promise me you won’t.”

Well, guess what was the first thing I did when I got to work that morning? I googled “Friedreich’s Ataxia”.  My stomach sank as I stared in disbelief at the computer screen.  “Wheelchair within 5 years of diagnosis.  Progressive loss of movement.  Deafness.  Blindness.  Diabetes.  Scoliosis.  Most die in their twenties from hypertrophic cardimyopathy” (translated thick, enlarged heart).  Ok, by now, I’ve had 2 years of doctors being puzzled, even being flat out wrong about Sam and what the underlying malady must be.  What scared me the most as I read on however, was how well these symptoms matched and described my son.  I broke down in sobs as I read.  I remember my boss wrapping her arms around me inside our tiny supply room at the clinic.  One by one, my dear friends and colleagues surrounded me, trying to console and ease what was building inside me, and building on the horizon.  Instantly, those foreboding clouds became way too close for comfort.  Surely this doctor was wrong, too.  Surely.  The girls agreed.

So, we wait………and we hope……..

By now, we are in October, and agonizingly awaiting blood test results that were being processed by some lab in a different state.   Sam was in the second grade and walking with crutches now (the kind I equated with cerebral palsy or polio). I had let the school and his therapists know the POTENTIAL diagnosis we were facing, and little did I know what their response to our situation would be.  Another surreal tap on my anxious shoulder, another squeeze of my trembling hand, another reminder of my recent car wash encounter promise.

Soon afterward, our tiny little community held a benefit pie auction for our family and Sam.  Unless you’ve been to this dinky rural town, it’s difficult to grasp the magnitude of the generosity and support the folks in Allen, Oklahoma displayed that night. Now mind you, this is not likened to a wealthy Dallas suburb whereby ease, comfort, and excess are part of the ordinary lives of the townspeople.  The crowd that night was enormous and over $19,000 was raised for us that evening.  I couldn’t keep my composure during the auction.  I flaked, and I hate to flake – though I seemed at the time to be doing it more and more.  My husband and I were stunned and in disbelief at the outpouring of support by so many.  I remember watching my little guy walk out to the middle of the gym with his crutches and that famous ornery grin.  With his trademark slow southern drawl,  (which btw, most of the doctors picked up on his slow speech – I know now why) he sheepishly thanked everyone over the microphone, and loud applause followed.  Sitting on those bleachers, my heart feared for what the future potentially held and the tears flowed that night in that dusty little gym, wondering what in the world was really happening.  However, if a home remodel and crippling medical bills were in our future, here was confirmation that the provision had just been made.  I’ll never forget that night.

 

“I know the plans I have for you. Not to harm.  Not to destroy.  Hope. Future.  Trust Me.”

Five o’clock in the evening, the week of Thanksgiving 2008, a few small words impacted our lives forever.  As rain poured down on a cold fall evening, I was hurriedly running to the Dollar Store after work before I headed home.  Our church was having a family communion service tonight in keeping with the holiday.  After all, if anyone had a reason to be thankful and stop life long enough to recognize the source of blessings, it was us. I knew I’d have very little time to change clothes, fix dinner, and herd everyone back into town to make the service.  As I was lost once again in my thoughts and worries and to-do lists, my phone rings.  An OKC number that I’ve waited impatiently for and yet feared with every fiber. Heart pounding, I answer it and all I hear is, “Mrs. Brown? Dr. Parke, here.  *heavy sigh* …….   I’m so sorry.”  I slowly pulled off the road, parked, and heard very little else that she told me.  I do remember, after hearing me cry, her lamenting over having to give out these kind of test results over the phone…….but she knew how anxious we were………..and about that followup appointment………..

The rain pelted down around me and the dam of my heart tore open, both drowning out her words.

I don’t remember the drive home – I do faintly recall telling Wade that evening in the privacy of our bedroom, and him crying.  We somehow made it back to church that evening – mainly for a diversion – yet my heart was far, far, far from feeling reverent …..reflective ……or least of all, thankful.  All I could sense was profound numbness and shock.  I could not participate in the service.  For me, communion always meant an examining of my heart, a time of reflecting on what Someone else did for me, the price that was paid, to be chewed between my teeth, and the swallowing down of the forgiveness and love and healing that I could never earn.  Right now though, in this moment, that act of sacrifice Jesus made for His created, was overshadowed and drowned out at the price that life was now cruelly demanding from us and my son.  My heart and mind were racing elsewhere.  Utter emptiness seemed to have me in its clutches.  I went out into the foyer, for I could not keep my tears choked down and turned off.  Being around people was now turning out to be a bad idea tonight.  Church, where you are supposed to have it all together, is the LAST place I now wanted to be at.

As I plopped down into a chair alone with a box of kleenex, I soon sensed the Lord stilling the chaos inside me, as if it were He Himself sitting right beside me, holding my hand ……… this was etched into my heart: “The entire reason for communion is to realize the Gift I gave to you.  I gave My son’s life, so Your son could have life.  So now, the choice is clear: are you going to choose to give your son back to Me?  I can be trusted, Lee Anna.  I can be trusted.”

I remember ‘sucking it up’ so to speak, and returning back to my pew.  To be reminded that I-we-Sam were not in any sense abandoned, produced within me the response I knew I had to make: the ever painful and slow task of just letting go of what I was clinging to so tightly inside my clenched fists: my child’s life, future, our life, our future, and the reality of it all now being changed.

No more control, no more predictability ………..

Is there freedom in release? I’ve found it to be so, but it’s a tough, excruciating process at times.  I believe the whole process has a name: it’s called the production of faith.  You know, I began early on in high school building and planning my life.  Controlling my destiny and outcomes, so to speak.  Making all the right decisions, (well sometimes) but never relying on God nearly as much as I relied on myself.  But this – this thing called FA.  This thing called a sick and frail child.  This thing called struggle.  This thing just plainly labeled “need” was not anywhere in my plans.  No room for great faith – no room for growth in the set of blueprints I had for myself.  My momma often says, “Faith doesn’t grow on top of the mountains, Annie.  It grows down in the valleys.” (Don’t you just hate it when mommas are right??)

I didn’t know 7 years ago that it would be years before I could bring myself to revisit Sam’s old baby photos and home videos.  I didn’t know that to find handicap parking on a cold day would actually require real prayer and patience on my part.  I didn’t know that I would come to LOVE the carb labels on McDonald’s take out because that makes calculating Sam’s insulin doses a breeze.  I didn’t know that my hometown school and community would eventually create an annual walk for Sam and our family, which has taken the sting out of a lot of unforeseen expenses.

There was a lot I did not know then, and yet now, I still find myself fearing more of the potential unknowns down the road.  But, in all honesty, I don’t ‘need to know’ and I sure don’t need to fear. But what an easy trap anxiousness can be to meander into.  History teaches some powerful lessons.

I can now appreciate the undeniable mercy and wisdom behind God not revealing the big picture to us, but rather choosing to only show us the next step.  Maybe because our hearts would be too overwhelmed to respond if we knew what was ahead.  Too many places we’d refuse to go.  Too many situations that we’d refuse to believe for His grace and His strength to get us through and be more than enough to get the job done.  I am glad there are still unknowns. And that alone serves to keep me humble and dependent on His shoulders.

So, here we are in 2015.  The upcoming week marks the 7 year anniversary of our roller coaster ride since FA landed.  What a journey it has been!  Gently, patiently, mercifully, God has taught Wade and I through the years how to ‘un-pry’ and loosen our grip on what we held on to so tightly.  One-by-one, we had to consciously choose to relinquish to Him what seemed like so much at the time:  the direction of our lives, Sam’s health, the lives of our daughters, our marriage, the bills, the setbacks, the vehicles, the cabinet shop, the checkbook, the careers……….. the rearrangement of our ‘living room’.

I truly look at this week as bittersweet.  Bitter in the remembering of the grief, sadness, depression, and anxiety it ushered into our lives (still does at times).  Sweet in how I can totally relate to that hokey poem “Footprints” that I never used to give a thought to.  How, how, how He has carried and provided in innumerable ways through the years.

As I sat in the Bob Hope airport gate this past week, it struck me like a load of bricks how EVERY ONE of our needs are met.  The need for endearing friendships, relationships, and diverse support from so many corners.  The need for family.  The physical needs of a home, food, a vehicle, income……..My list could continue on and on, but bottom line is that I’m so thankful for His unending and unfathomable love, produced so incredibly clearly at Calvary.

I couldn’t see that 7 years ago in the church sanctuary, but I know now His plans for our future are not for destruction and hopelessness, but rather quite the opposite, just as He promised thousands of years ago.  Unequivocably, He can be trusted.

Car washes, Communion, and Anniversaries – yeah, they are pretty special to me.

It’s good to remember.

Thanks for reading – Annie