Do you see me?

I shook for almost 3 hours in that clinic recliner chair after a treatment that was supposed to help me.  Why did the nurse wait to answer the call light when I finally figured out what I needed to do?

treatment, recliner, hospital, bark a lounger, adjustable, IV infusion

I couldn’t speak properly but had to go to the bathroom greatly, knowing it would require transport via wheelchair and considerable physical assistance.  Why do I have to risk the episode worsening as I attempt to blurt it all out and even help operate the dang chair?

My left arm and leg were too weak and unstable as they seized with the rest of me so pivoting on a leg opposite the grab bar was the only way to land on the toilet dontcha know?  Why do I have to keep repeating that initiation of speech or movement makes the convulsions worse then be forced in a situation to have to do both anyways?

Each jolt repeated hundreds of times that night made the headache spike while wrenching my neck, spine, low back but alas I could do nothing to stop it or change its course.  Why did not voiding alleviate the symptoms like it had so many times before?

The infusions of fluids were supposed to help me treat the dysautonomia they said and address the dehydration but instead pushed me deeper into an exacerbation of my worst symptoms.  Why did not both doctors return my calls about my care that week, that day?

My beloved rescued me, drove me home, and helped me start the decontamination procedures to minimize the influence of exposures that could make the episode persist.  I feared falling in the shower after mumbling that I thought I could do it myself after he left.  Why do these heartaches keep happening to us?

I am still so very sick a year post IV antibiotics, genetic coaching, IV and compounded nutritional treatments, testing and treatments beyond that most experts would ever comprehend.  Why am I still at this level of strife FIVE YEARS down the road with no money for a big new direction, a possible cure?

The symptoms concerning me most recently are the ones where my cognition becomes dulled.  Why . . .  How in the world will we figure this out if my mind goes dim now?

I place this need to know “why” at the foot of my Lord’s cross who crafted this journey for me and my beloved for this time in our lives.  Thank you Jesus for Steve’s love.  I surrender my questions, my suffering, the thorns in my flesh, and the weakening of my mind to Your mighty hand with trust o’ God of the universe Who reigns!  Whether the battle is in the heavenlies or in my heart, my flesh, I let it all go to you now and ask for your covering my Jesus Christ.

God’s Word captures the submission of Job to the Lord in His time of suffering:

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another. (Job 19)

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.” (Job 42)

Me too.  I trust that You always see me.  I will trust in you.  JJ

When there are no words

“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121

I was made for you

You looked at me with the bluest of eyes and said that we were going.

The ugliness of illness that had proceeded that moment held the rest of the day in the balance —

Obligations awaited us yet all the precautions, procedures, special preparations, and planning getting to this moment made no difference.

I could not move until you moved closer towards me and spoke into my moment of sickness.

And in a scene borne out of love that many will never find,

You gently lifted me to the edge of the bed so that I may dress, may push the mangled hair from my own eyes.

As if time itself breathed slowly from one moment to the next, I became able to sit up on my own again.

We chose the adornments to fit the occasion; we got me standing then walking forward.

I drank some water from a bottle nearby.  My brain moved more quickly and the next tasks came alive.

And as if what would be horror to a fly on the wall just minutes beforehand,

You tenderly called to me our next steps as we prepared to go meet the rest of our day.

We both had a bite to eat, groomed ourselves, and moved closer to the door:

The events of getting ready now no different than what has become the routine of trials endured many times before.

But this time it was your love that called me forth, moved me on; yes your tender words alone helped move me on.

And when we were along down the road a ways ready to meet the others,

I sat in awe of the life the Lord had crafted for me, for you.

Never would we have asked for heartache and sorrow that looked like this

Yet in a dreamy place would we have designed a magnificent love made just for me, just for you.

It doesn’t matter how we “getter done” when the Lord sits with us at His table

When His grace transcends the stuff of life, when I am carried by redeeming grace from both of you.

So when the happy couple says their vows at their own marriage supper in a day,

May they somehow come to know what true love lives like:  He looks like you dear one:  the Father of the Bride.

I love you Steve.

Just Julie

Who He Is

We all have some level of common sense:  that which we can agree is reasonable in any given situation.  Then again I have found that common sense just isn’t that common anymore!

I listen with intrigue when hearing the real-life experiences of others who have been successful at something.  Gaining triumph over tragedy.  Seeking good after playing with evil a bit too much.  Finding wisdom over folly.  Finishing a difficult task.  Inspiring others with your amazing story.  All this is good and unites us in our humanity when we can relate to the experiences of others.  I have heard from those who have travelled extensively overseas that most people around the world want the same things for their families and from their relationships with others no matter our cultural differences might be.  Thus we can all celebrate when the “human spirit” triumphs:  the good guy wins, the lonely widow finds love, and the person who passes on from this life having left a legacy for others to follow.

But what if there is more?  What if there is a source to that common sense that is in-bred between the strands of our DNA?  What if the innate knowledge of good and evil transcends the do’s and don’ts our elders taught us growing up?  And what if we all could persevere beyond both the winning and the losing?  After all, we all lose our lives in the end and cannot take any relationship, thing, achievement, or fit body with us.  We probably should keep trying to get it right anyways!  And that is very hard to do on our own.

When we find the true meaning of life, how the heck we got here, our giftedness, the Master plan for our lives, and humbly receive with gratitude our lot in life then we can be truly alive.   How do we find these?  We find our answers when we invite the Lord Jesus Christ into our hearts.  We learn about Jesus (who is one with the Father and the Holy Spirit) by reading the Bible, in prayer and meditation, in fellowship with others in the body of Christ.  The person of Jesus Christ created us in His own image; he draws us near to love and follow Him.  In doing so we grow in wisdom and all of the fruits of the spirit:  peace, love, joy, patience, kindness, goodness, gentleness, faithfulness, and self control.  (Galatians 5:22-23)  Our purpose, our reason for being here can become clearer.  We then grow in understanding as we mature as believers, gaining wisdom from the indwelling of the Holy Spirit, our Counselor.

In the words of the Apostle Paul to you Gentle Reader,

18 I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, 19 and his incomparably great power for us who believe. That power is the same as the mighty strength 20 he exerted when he raised Christ from the dead and seated him at his right hand in the heavenly realms, 21 far above all rule and authority, power and dominion, and every name that is invoked, not only in the present age but also in the one to come. 22 And God placed all things under his feet and appointed him to be head over everything for the church, 23 which is his body, the fullness of him who fills everything in every way.  (Ephesians 1)

He is the One who will receive us in all of His glory at our finish line when our days are done.  How well will we finish the race of our lives?  (Check out Hebrews 12:1-3.)  I’m trying remain humble on that one for sure.  Maybe you already have a personal relationship with God through His son, Jesus Christ.  I am delighted to meet you here as we will surely have great fellowship in heaven someday!

As Easter approaches this is a great time to revisit who God really is to each one of us.  We can all use this season commemorating His tremendous love for us as an opportunity to draw closer to the Lord.  Realizing this tonight was brought forth in meeting a few gals who have endured then overcame much heartache in their lives.  Me too.  Thank you Lord for leading me to your throne of grace.  Sure would be great if finding who You really are was even more common as common sense is too.

kneeling in prayer

He knows

Whenever I am down and out

Instead of rising up and giving a shout,

I’ve learned to keep my big mouth shut

And hold my poker face to save my gut.

I used to sputter and blurt out a reply

And earned a reputation like that of an un-nice guy;

They called me “bold” but it got me no where

Just too many nights right here alone in my under____.

Well not really but it rhymed you see

‘Cause appearances were all the rage back then to me;

All the while He waited in silence

Beckoning me with hope and a promise.

Decades flew by and it weren’t too pretty

My youth faded:  I lost more than an itty bitty:

My husband, my mom, my brother, my dad

I had more than enough reasons to be quite sad.

So where did I land when the fires took it all

The shell of a woman who once spoke a little too proud and tall?


Hmf.  This broken child crawled before the throne

Put down my sword and picked up His own.

The dragons we slew:  the Christ Jesus and I

My strength now His, my voice that of One on high.

My steps softened, tears sweetened at last and for better reasons

Even the fruit of my labors grew differently in the coming seasons.

I have not any idea where all this will go

Will I ever “get there” or find the answers I need to know?

It almost doesn’t matter ’cause even one bummer leads to the next joy

So ‘just hold on Little Julie, this next chapter’s gonna be quite a ride!