This is going be a real test of my writing skills – I’ve been thinking about this next post for a few days. To be able to put you, the reader, inside the scene that is as real to me as the air I’m breathing, will be quite a challenge.  How does one really put into words that can be read by the eyes, what only the heart sees clearly? What I will attempt to describe may come across to some as silly; it may leave others with the impression that I really am weird and spaced out; others, however, will likely be able to clearly identify with me, for I know that I am not the only one this has happened to.  It is imagery and an event that I will take with me to my grave – and what I will try to explain here has proved to be a lifeline to me many times when I felt like I was sinking.  Let’s go back a few years…….

In the days and months that followed Sam’s diagnosis, it seemed that life was just a spinning whirlwind. I guess those were days that we likened to being caught in a tornado.  Spinning debris and chaos, unable to think clearly about the next move and where to go – but just feeling a deep yearning that at the root of it all – we only just wanted shelter and for it all to GO AWAY.  Thanks to this new and awful discovery, a mountain of decisions and unknowns lay ahead of us: a home remodel. Handicap accessible this, handicap accessible that. Insurance premiums, hospital bills, copays, Wade and his cabinet business woes and stresses that are ever before him. Me facing cancer patients daily at the clinic, yet feeling so disengaged and unable to see their plight and needs – because mine seem to be ever before me, taking center stage in my mind and heart. A Make-A-Wish trip. Gifts upon gifts being heaped upon my 8 year old son, while I catch sorrowful and confused glimpses of my daughters in the background, kinda hanging in the shadows, not knowing quite how to respond to their brother, or this new world we’ve been thrust into. New people and jargon entering into our lives: paras, orthotists, orthopedic doctors, MDA, physical and occupational therapists, cardiologists, fundraisers, social security……the vice grip seemed to be getting tighter and tighter and tighter. “Live for today! Enjoy every moment you’ve been given…..”  WHAT??!!?

Throw into that turmoil my obsession with my newly found indulgence: a parent support group for FA. I found myself gravitating towards it lots, asking questions, and poring over the flood of answers and advice I’d be given from all across the US.  It felt so good to be able to connect with others, mostly.  You know, the ones that really “get it.”  Several key friendships that I now cherish years later, was born out of that group – and I am forever changed through getting to know these incredible moms and kids. However, it kinda became what FB is like to me these days – more often than not,  a discourager rather than an encourager. Yet, I couldn’t find the will power to just turn it off. I found myself many nights shutting off the computer crying and sick with fear from what had just passed before my face.  To read about the other’s struggles with their children would leave me devastated and empty. I’ll never forget one post from an overseas mother whose teen daughters both had FA.  She detailed their struggles, dilemmas, and then ended her typed plight by cursing violently at God for doing this to her daughters and their lives. Venom dripped from her words and it rattled me to my core.  “Dear Jesus,” I thought, “is this what will happen to me? Is this what my son is going to be? Angry, shaking his fist at you in the future? Is bitterness and regret going to consume us?” I felt locked in a constant battle of fear vs faith. Despair vs hope. Trying to display graciousness and poise in public vs private evenings hiding in my closet with the door locked and pillow over my head to muffle my sobs. In desperation for some relief, I turned to sleeping pills.  It seemed to be the only relief that I could find  – I just wanted to go to sleep.  How I felt about crying and grief – they had become woven within me and my identity.  Rather than push them away, I began finding myself looking forward to my closet time; to my commute home from work; to a precious few moments in the shower.  When I was afforded any solitude, I simply wanted to cry constantly and nothing more. That’s where I was the most comfortable.  To just empty it all out like a dam with a loose stone.  Just pull that sucker out and let ‘er flow.  Most days, for a long time, that was the best I could do – keep the rocks loosely shoved in the crevices of my broken heart and not allow any leaks til I found myself out of the presence from people or my kids.

I felt an eery distance beginning to grow between my husband and I. He wanted to reach out and console me, to make the grief and burdens not so heavy – but the only way I could see relief was for this nightmare to just go away. Looking back, I’d be amiss to not acknowledge what he himself was going through. He was the sole owner, operator, secretary, builder, installer, of his cabinet shop that sits in our back yard.  Not only the pressure of keeping up enough work for his few employees, but add to that the burden of raising and providing for three children – one son with mounting health problems, one daughter that’s on the brink of entering into teenage-dom, and then his little curly headed, 5 year old bouncy baby girl.  Oh, and plop an ill tempered, exhausted, crying wife on top of all that.  My Wade is a rock and I shudder when I think how I rejected him during that season. After all, I had read and heard about divorce rates with a special needs child – the stress is nearly overwhelming and marriages succumb to the pressure and the unraveling of dreams.

Have I painted a fairly bleak picture? They were very dark days.

Finally retreating one night to my most favorite place in the house (my closet reserved the next slot after my bed), I let my tired bones sink into the sheets.  As was a frequent habit, I stared out my french doors at the starry night, and sobbed myself to sleep, dreading what the next day might hold. It meant carrying on, and I didn’t want to.  As my mind wound down and grief was stayed so sleep would finally come……… it happened.

I found myself in the midst of silvery gray color, with varying hues of baby blue light that was outlined in white.  All the sudden, I was caught up in the strongest and most familiar arms that I’ve ever known. I buried myself in a tall, broad, shoulder with my tear stained face covered in His hair. Long locks of soft, white hair that I didn’t want to ever leave me.  The most peculiar and odd sensation came over me, and I all I could say through choked sobs was, “Oh Father, it’s You.  It’s really You.  It’s finally You.”  A rush of relief, peace, and comfort flooded my soul as I felt His arms hold me. And I knew that I was safe to pour out all my sorrow, all my fears, all my disappointments and even my shame onto Him.  I felt no guilt, only permission.  That’s a liberty I never felt I could really take with anyone – it upset Wade; strangers didn’t know what to say or how to respond to me; I certainly couldn’t let it “all hang out” with the girls or Sam.  But here – this place was different.  He held me, this Person that felt like was so much a part of me.  I was captivated by the comfort of His being and felt just like how a newborn baby roots into the familiarity of his mother, seeking comfort and solace in the bend of her neck. I never saw The Lord’s face – but His shoulder to cry on and His arms around me was all I needed.  I didn’t hear “Lee Anna, it’s going to be ok……..your child will be healed”……no words, only an embrace and a comforting reassurance that I can still feel deep in my bones today when I think on that dream. I’ve searched the internet over, looking for an image, and this probably comes closest to depicting what’s in my mind’s eye – except for the lack of long, white hair, and I never saw a face.

I think we all come to points whereby we question our faith and this world.  We question what we’ve heard, seen and read all our lives – is He real? Is this all a lie? WHAT IS THE STINKING PURPOSE of this life and its heartache?? God, are you REALLY THERE??!! That’s exactly where I was. I never felt flat out anger in those days, but I was frantically searching and scraping for something to grasp.  I looked inside myself and even outwardly to those around me – my mom, Wade, my children, the doctors – none could make this go away, there was nothing to offer.  I needed SOMETHING tangible and a cord to grab, for I really felt I was losing a grip on my sanity.  And it came – in the form of a comforting dream – that I treasure beyond description.  Numerous times since that night, I’ve caught glimpses of His love and hand; we’ve been the recipients of His care and providing for us, and one by one, I’ve seen some of my deepest fears NOT come to fruition, while countless prayers have been answered.  Never, ever, ever doubt how far prayers can reach – I hope one day to see just how far reaching and how much we have been carried by prayer.  I’m sure I don’t even realize it half the time.

Now – I’d be lying if I said it’s all been roses and rainbows since Sam’s diagnosis. At one time, I cried over a parent’s group email post asking advice on which shower chair to use for their son and I lost it, once again.  I simply COULD NOT picture my son in a shower chair – and now it’s a piece of equipment we can’t live without – and it’s ok.  We’ve had dreaded events (spinal surgery, career changes, diabetes) that have become realities, but they didn’t consume or devastate us, like I feared at one time they would. I still have fears for the future; wondering how many more changes that Sam and we will have to adjust to? But I’m reminded again as I type, to stay grafted in to the vine. That dream was a turning point for me – and I really believe that it’s a universal truth for anyone looking at bleak and scary horizon.  There’s no place we won’t go if we know Who is holding our hand through it, and that WE ARE NOT ALONE.  Or scooping us up to be held, to be reminded that we are seen, cared for, and loved – no matter what our emotions are telling us.  Years later, I find the words penned and sung by Crowder to be spot on:

“Come out of sadness, from wherever you’ve been.

Come Brokenhearted, let rescue begin.

Come find your mercy

oh sinner,

come kneel.

Earth has no sorrow that heaven can’t heal.

So lay down your burdens, lay down your shame.

All who are broken, lift up your face.

Oh wanderer, come home – You’re not too far.

So lay down your hurt, lay down your heart –

come as you are.”

Thanks for reading – Annie