February 25, 2018  6:33  Sunday am

Sleep decided at 5:22 that it was done for today.  Between Sadie whining and nature calling me to the bathroom, my brain cells respond to the stimuli and decide that enough is enough.  “Get your carcass up off the mattress.”  At least until about 9pm tonight, when I’ll likely have very few of those cells who want to keep awake and firing……

For the past year, I know I’ve had these regular urges to write; to chronicle; to record moments, changes, emotions…… I honestly don’t know if I’m writing for me, or if I’m writing for an unnamed future audience. I’m going to decide this morning that I’m mainly writing for me, so I can remember the struggles; so my words can remind me of the grace and gifts in certain moments; so I can hopefully reread my thoughts in the future, and glean some kind of meaning to it all.  I want to be able to look back and say to myself, “See, mom always told you that 99% of the time, your worse fears never come true.”  Or by reading through these events, I’ll be able to drop to my knees and let my mouth and heart cry out and thank Christ for walking me and my family through those fears and some very dark valleys that remain unnavigated at the present.  I’m quite sure it’ll likely be the perfect mixture of both – fears that will have been slowly – yet systematically- replaced with quiet confidence with each step that was taken.

Speaking of a new valley……..I felt the familiar shadow of sadness and disappointment settle over me in the dim radiology room with Sam at Children’s hospital Friday morning.  Like a familiar, yet uninvited friend, it found me, thanks to the relentless progression of FA inside his body.

Sam was strapped into a tall pink upright chair, his thick curls refusing that morning to be tamed for the day.  He had grinned big when one of the techs laughed at his tshirt that his Aunt Em had bought him for Christmas.  A blue “You’re killing me, Smalls” screen print.  He loves funny shirts.  His black eyes seemed especially bright and huge, yet his face pale – thanks to a winter that has been spent of mostly being in his bedroom with his beloved Xbox. The room was buzzing with a speech path, the radiologist, and a very kind tech, giving him instructions on how to swallow the different kinds of liquids and food they were about to poke down him. The TV screen was positioned so that Wade and I, along with Sam, could see the test being performed.  A test to see if FA has left him the ability to swallow and drink.

While it was fascinating to see his mouth chew and to watch the black bolus of liquid quickly slide down his esophagus, that moment of the wonder of technology was shattered by the speech path as she quietly said to the doctor and touched the screen with her pen, “Ahhh….. I see it right there.  There it is.”  Nodding her head and staying glued to the screen as Sam continued to swallow the barium infused consistencies, she’d occasionally turn to Wade and I and point out what we expected, but really feared deep inside.

Silent aspiration.  His mouth and throat muscles are now too weak to even safely navigate the things he looks forward to: icy sweet tea, diet pop, food.  A collective and audible agreement with everyone was understood when he began coughing in the chair, trying to clear the fluid out of his trachea as we watched thin black slivers of it slip down the wrong pathway.

I stepped out of Sam’s eyesight to the back of the room behind the machine, because I didn’t want him to see me lose my composure.

Damn this disease. Yes  – I said it, because it’s exactly how I feel.

I’m slightly comforted by Wade’s hand on my shoulder, trying to pat away the sorrow that’s overtaken my emotions and cracked the front that I’m used to maintaining. I will myself to suck it up and stop it. Crying doesn’t change anything.  It just upsets everyone around me and makes the 45 minutes that was spent on my appearance earlier in the morning, a complete waste of time and mascara.

I’ll cry later.  Privately.  By myself.  And I did.

I wonder if the staff is surprised – I wonder if they assume that because Sam is the size of an adult, that all this is just routine and no big deal.  Surely we’ve been over the hump of struggle and sadness of what a debilitating illness brings. I wonder if  they think that we’re solid and can take the next turn in this illness like pros in the Indy 500? Ridiculous thoughts that race in my muddled head…..

The time in that dark radiology room with the quiet cheerful voices continued, as Sam was scooped up by Wade and moved onto the xray table for the second part of the test.  The anatomy of his stomach and small intestine needed to be examined now, for a PEG tube is now inevitable, thanks to the several wrong turns that the black liquid made. They turned him from side to side, directing him once more, “OK Sam, I want you to take a big drink and swallow when I tell you……Drink, drink, drink, drink…….good.  Ok, now swallow BIG.  Good!!!”

This is not the life event I ever envisioned for my vibrant black haired son. While the boys his age are being cheered for in basketball playoffs, my son is being cheered by the radiology crew for correctly drinking kool aid flavored contrast……. and it’s a small victory when he’s able to do it without coughing.

Life always begs in every moment to be lived out with a choice:  Be thankful, or be bitter.  One choice makes life bearable and enjoyable; the other squeezes out hope and leaves nothing but unresolved anger and emptiness.  Just like strong hands wringing water out of a wet cloth; that’s often what I fight with inside myself. Today is a battle to stay wet with comfort and grace and thankfulness, and not be left wrinkled and dry as a bone.

We left and went to Ted’s restaurant, the three of us, in a pouring down cold, drenching rain.  A good meal is usually what we try to reward Sam and ourselves with, with each trip to OKC for the various doctors that we’ve seen through the years.  Ted’s and Red Lobster are always at the top of his list.  As usual, all the front handicap parking is taken, but on a day like today, it sure would’ve been nice to not have to slowly unload out of the beast in this weather, and clear around the restaurant to get in.  Wade gets soaked manning the lift and controls as Sam unloads; we bundle up Sam in blankets and I try to keep us both under the umbrella.  We make it in and get seated, already a bit deflated from the day that it’s been so far.  We had the kindest waiter though, and I’m so glad.  He had no idea what his politeness and genuine smile did for all three of us.

Funny how the small things help put a little icing back on the day, that had previously slid off into the floor just an hour earlier in the hospital.

When the food arrives, and as I’m feeding Sam, I hate that we all have to be more mindful now of each bite that’s given him.  I cringe inside when I witness him purposefully bend his head down to swallow, while he tucks his chin to his chest as best he can, trying to protect his airway.  A maneuver I taught him from long ago that I remember from my time spent in rehab nursing  – when I became pregnant with him. Who knew that all that nursing care and safety measures I learned during that season, would be required to be applied to that child in my womb one day…

I watch him make a feeble attempt to pick up a piece of a warm tortilla, and I have to discreetly place it inside his weak fingers.

It didn’t make it to his mouth.

Ten years this Thanksgiving we have been acquainted with Friedriech’s. And it still cuts so deeply into my and Wade’s hearts.  Some things have gotten easier, but the process of witnessing and caring for a declining child is as gut wrenching as the very first day that our radar was made aware that something was not ‘right’ with Sam.

But, as I pointed out earlier, life begs in each moment to be handled with a choice. Thankfulness or bitterness.

I take a deep breath as I’m typing and I remember what I was doing this time last Sunday….. I had studied out the word “Immanuel” and was overcome in my heart with it’s meaning, as if it had just dawned on me for the first time ever.  Joy, gratitude, awe – I was struck anew by reading the familiar verses that I’ve heard all my life.

God.  WITH US.  God came.  The  terrifying whirlwind for Job; the hand that protected Moses in the cleft of the rock; the bright and glorious cloud that settled on the wilderness tabernacle, so Holy that no one could enter; the Creator that came as a vulnerable infant to lay cold in an animal’s food trough; the Man that cried and wept in the garden, while he begged those closest to Him to stay awake and pray; the One who caused the massive veil to be ripped in two, occurring in the presence of those who accused Him of being a lunatic and a fraud.

He came.  So I could come into that place.  So Wade, and Sam, and Kinsey, and Kathryn…. we could come into His presence, because He first came into ours, and suffered cruelly to establish that privilege and promise.

If the Creator who holds all time and each breath in His hand CAME – I can be assured through my tears that we won’t be abandoned in this chapter.  I’m deeply afraid of chronicling and typing the scenes in all this that still have yet to be revealed and lived out…..

But I am comforted beyond words that I can express;  Immanuel is right here beside us.

God with us.

Thankful.  Assured. Never, ever, ever abandoned.

Breathing peace again.

There.  I’m done.

Matthew 1:23  “Behold, the virgin shall be with child, and shall bring forth a son, And they shall call His name Immanuel; which means God with us.”