the dance

The date of Ryan’s next surgery is slowly creeping closer and closer.  And once again, grief paces itself with the approaching procedure.  The calendar flips from one day to the next with the gap from here to surgery getting smaller and smaller.  But with each passing day, the grief gets bigger and bigger.  It fills my heart with sorrow.  It overtakes my thoughts like a low, dense fog I can barely see through. My arms push and shove to clear it out, yet it doesn’t budge.  It clouds my judgment and opens the door inviting worry into my heart.  Ryan has had eight surgeries and every one of them was to fix something, to help him improve and develop and have a chance at gaining ground developmentally.  But today, as I look to the horizon and wait for the sun to rise five more times before we head east, today, it just feels different.  Today we plan for a surgery necessary because Ryan’s body is failing him.  Failing at something that should be so simple.  Failing at an essential function most people barely give notice to.  Failing in a cascading effect of unknowns.  And my heart can barely contain the sorrow.  My strength is too weak to stop the tears.  My mind is too overtaken with grief to stop the heaviness bearing down on my strength.  It is one thing to know in my head Ryan’s body is weakening.  It is another thing to send him to surgery to place a manmade button in his abdomen to do a job his body is supposed to be able to do on its own.  To know from now on, for every single day he has breath, it will take the care and actions of another to force Ryan’s body to stool. Because his body has failed him.

I’m just not ready to face the next thing.  I’m not prepared to take it in.  I don’t feel strong enough to figure this out.  Making a new evening routine, finding the right amount of fluid, trying so very hard to get Ryan to cooperate and sit still for 20 minutes or however long it’s going to take to flush his GI system.  It’s going to be a huge change for us.  It’s going to take a while to figure his body out.  It’s going to take patience and care.  I’m just not ready. Oh, I can hook up a tube, flush a mixture of fluids, wait for results, clean Ryan up.  That’s easy.  I’ve done much worse in my day.  But I’m just not ready for the next thing.  I’m not ready for the losing to become so real.  This surgery isn’t just going to sleep and putting a tube in Ryan’s intestine.  I wish it was that simple.  No, the losing is in the failing of the body.  The losing is in the fading of the mind.  The losing is in the fading of his strength.

Last night I sat on the couch watching TV as Sidney and I chatted about life.  And as I looked over at Ryan and our eyes met, he lifted his arm and extended his hand out to me.  He couldn’t tell me with his voice, but he told me with his eyes.  He wanted me near.  He wanted my warmth and my touch.  He needed his momma to cuddle.  And so we did just that.  I held him tight. I told him my secrets.  I told him of my love.  I told him as best I could all my heart feels for him.  And just as his brain doesn’t allow his voice to be heard and express his thoughts, my voice wasn’t capable of telling him all my heart holds to be so true.  There is an emotion like no other when a person gets to love a little one slipping away.  There is a pain weaving through the fabric of time and space without description or reason.  There is a fear of future planning and a sorrow for all things lost.  I don’t know how two conflicting emotions can share space as they do.  For the love is as vibrant as the sorrow is dark.  They dance together in matchless rhyme and rhythm.  Such conflicting and yet perfectly paired partners.

As my phone rang and the nurse and I played twenty questions preparing for the surgery day, I recalled medications, doses, surgery dates, complications, answered the other endless questions about illness and when he can eat and drink, talked about the details of surgery.  And then the words came I had to confirm.  The talking of diagnoses.  To hear another say the words and know they exist on the chart with my boy’s name typed at the top – cerebral atrophy and developmental regression.  I know these to be truth.  I know the failing of development.  I know the rejection of growth.  But to hear another speak those words.  To give them power.  It struck me in my gut.  It caused my breath to be taken from me.  It made me shudder like a cool, crisp breeze that catches me off guard.  I wasn’t ready to hear those words.  I didn’t want them to be said.  Because even though they are my secrets I tuck in my soul, I don’t want to hear them from someone else’s lips.  They are given life when spoken and confirmed by another.  And the grief wells, the sorrow overflows, the tears spill.  Because I can’t keep losing the boy.  I can’t face the stealing of life.  I can’t keep giving the pieces I’m grasping so tightly.  I’m afraid of what is coming.  I’m desperately afraid.

And then I think of eternity.  I see my boy running and yelling and laughing and playing.  I see jumping and throwing and kicking and catching.  I see energy and boundless chatter.  I hear him yelling our names.  Daddy!  Mommy!  Brad!  Sidney!  Trevor! I love you! And that’s what I look forward to when the fear comes. The day when the special needs are stripped away.  The moment when the healing comes. The mercy of renewal.  Because I have eternity.  Because Ryan has eternity.  Together we have Jesus.  Together, as a family, we face the coming of every tomorrow knowing the fading will continue, the stealing of health will not stop.  Together, as a family, we excitedly talk about our days in Heaven.  And those days will far outnumber the days here full of sorrow and loss.  Because we have salvation.  We have souls full of Jesus.  We have the promise of better days.  We have all things eternal.  And that’s the hope I keep anchored to my heart.

Each day brings a constant dance of joy and sorrow.  The filling and emptying of a momma’s heart.  The hope and fear competing for first place.  So many things might go wrong.  But so many things might go right too.  We don’t know our tomorrows.  But God does.  As I struggle alone through grief, as I lead my older three through worry, as I hold my man through yet another stressful moment,  I can’t help but let my mind wander to the things I know to be true.

He will cover you with his feathers and under His wings will you take refuge; His faithfulness will be your shield and rampart ~ Psalm 91:4

My eyes are ever on the Lord, for only He will release my feet from the snare ~ Psalm 25:15

Even to your old age and gray hairs, I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you ~ Isaiah 46:4

Faith is confidence in what we hope for and assurance about what we do not see ~ Hebrews 11:1

And my favorite I claim for my sweet Ryan – Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him ~ James 1:12

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