Overflow With Hope

We have done our part.  We went to KU this morning to finish up the last requirements for transplant testing.  Jason nonchalantly watched a technician draw nineteen vials of blood from his arm.  I started feeling a bit woozy after I'd counted the first twelve.  We met with a different kidney doctor, and tried to address his various concerns.  Jason was feeling largely unconcerned at this time, since he was trying out one of the clinic's new remote control recliners.  They also did the planned ct scan of his abdomen, as well as chest and dental x-rays.

When the transplant committee met back in May to discuss Jason, we were told they'd decided to proceed with getting him listed.  We were under the impression that this would definitely happen once cardiology cleared him. It was disheartening to realize this is not the case.  We learned that the committee will be meeting again tomorrow to make a final decision.  His transplant coordinator should be calling us on Thursday with this news.  

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." (Romans 15:13)

Endurance

Several weeks ago, one of Jason's dialysis nurses decided to contact his KU transplant coordinator since we still hadn't heard anything.  She was told that we would be getting a phone call soon to schedule an appointment. When this didn't happen, his nurse suggested we contact Research Hospital to begin the transplant process there.  Research is the last option available in the Kansas City area.  We steeled ourselves to start over again, and signed up to attend the initial class on October 9th.  

When my phone rang this morning, I was rather surprised to see KU's number on the display.  Jason's coordinator said she'd like to schedule him for his last appointment.  Because of the way she worded it, at first I thought she was saying they weren't moving forward.  She went on to describe more about what the appointment would entail...labs, chest x-ray, pelvic CT, as well as meeting again with the surgeon.  Exhale.  It seems she meant his last appointment before being listed.  She wants us to come next Tuesday, October 8th. They had planned to use his test results from St. Luke's, but must have decided to repeat these few since it's now been more than a year since they were done.  We will hold off on Research for now.

Jason continues to feel well on dialysis.  His latest labs were very positive. He's never particularly enjoyed reading, but lately has been engrossed in anything he can get his hands on...from grocery store ads to Ladies' Home Journal, ha.  Our library gives away older issues of magazines, so I've been picking up Sports Illustrated each time I go.  Whenever he gets a hint about the date on commercials, he reminds us that his birthday is quickly approaching.  He normally asks how old he's going to be, so Eli and I have him guess.  So far he's always guessed the low 30's, although he's finally going to be 39, and will join me in the 40's soon enough.

"May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy." (Colossians 1:11)

Live And Unplugged

I  woke early this morning to the sound of Jason's dialysis machine beeping. This is not an uncommon noise in our room.  The display read, "check patient line" so I asked Jason if he was lying on his line.  He ever so casually responded, "I'm not even hooked up."  I was instantly alert and possibly a bit panicked.  This is the reason I have slept so fitfully for the past five months. I've never been entirely certain what Jason might do during the night.  Until this morning, I've always woken up whenever he's tried to get up to use the bathroom. I've come to the conclusion that either (a) I was rather unconscious after a long week, or (b) Jason has secretly been developing ninja skills.
There's a procedure that needs to be followed whenever he is connected to dialysis in order to avoid contamination.  This involves hand washing, wearing a mask, hand sanitizer, scrubbing the catheter with a bleach solution for one minute, and never touching the end of his uncapped catheter.  Needless to say, Jason wasn't able to remember these steps before setting off on his journey to the bathroom.  We ended up going to the dialysis unit at the hospital so they could put a new sterile end on his catheter.  He is also taking an emergency antibiotic for two days to prevent infection.
When Jason went for routine labs last week at the dialysis center, one of the nurses suggested we contact Research Hospital about transplant since KU still hasn't followed up.  She also left a message with his KU coordinator in hopes of learning his status there.  If we decide to try Research, we would attend a class in early October.  They would then request his records from KU before deciding whether to proceed.  We are trying to be patient, and trust the answer will come at the right time.
Eli seems to have already settled in nicely at his new school.  There is a lightness in him as he strolls to the car after his day.  He is excited about playing basketball in October.  We are incredibly thankful that God once again provided exactly what was needed.
I lost a friend this week to leukemia.  Audra had been fighting valiantly for the past seven months.  Each night before I went to bed, I would read her daily journal entry on CaringBridge.  She made such a difference in my outlook on life.  She faced each new day with strength and grace, even as she endured unimaginable struggles.  She had an enormous impact on me, as well as countless others.  I am heartbroken for those who were closest to her, and pray they can find peace in the days ahead.
"Create in me a clean heart, O God, and put a new and right spirit within me.  Do not cast me from your presence or take your Holy Spirit from me. Restore to me the joy of your salvation, and grant me a willing spirit, to sustain me." (Psalm 51:10-12)

Audra...such a brave warrior

Shelter Me Safe

We were running behind as usual this morning.  By the time I'd unhooked Jason from dialysis, and coaxed him into the shower, I only had a few minutes for (much-needed) personal primping.  Eli was wise enough to perceive this wasn't the morning to argue his case about not needing a shower.  Once we were all squeaky clean and properly attired, it was clear we would not be punctual.
As we quietly slid into a pew, our song leader was just announcing the next song.  He requested that the sopranos sing the first verse, with each vocal part joining on the subsequent verses.  Since I've often longed for a lovely alto voice, and find the sound especially soothing, this pleased me.  As I heard the first strains of Nearer, Still Nearer, I felt myself unwind from life's uncertainties.
This is the song I've found myself turning to time and again in the past several months.  Whenever I feel overwhelmed, the lyrics provide solace.  I play it each time I begin to worry about the future of Jason's health. Even as life seems to be unraveling all around me, it never fails to comfort me. When I wake up in the middle of the night, and am unable to breathe while thinking about my dad, I repeat the familiar lines in my head until I fall back to sleep.

1. Nearer, still nearer, close to Thy heart,
   Draw me, my Savior—so precious Thou art!
   Fold me, oh, fold me close to Thy breast;
   Shelter me safe in that haven of rest;
   Shelter me safe in that haven of rest.

1. Nearer, still nearer, while life shall last,
   Till safe in glory my anchor is cast;
   Through endless ages ever to be
   Nearer, my Savior, still nearer to Thee;
   Nearer, my Savior, still nearer to Thee!

http://kleinwood.com/annual-singing/2005/08/05/nearer-still-nearer

Echoes

My sister is always the first one to notice when I begin to fray at the edges.  The past several months have been especially difficult, and took their toll.  I've been finding myself increasingly emotional and not coping well.  Yesterday she casually asked if I had plans for today, and informed me that she had a surprise getaway in store for me.

After we'd been on the road for a bit, I realized our secret destination was Jamesport, Missouri. This is a quaint little town surrounded by an Amish community.  It was one of my favorite spots to visit when Jason and I were first married, but I hadn't been there for many years.  As we drove through the peaceful countryside, I felt my inner turmoil quietly slip away.  She had arranged for a private tour given by the owner of a bed and breakfast, who directed us to a country schoolhouse, Amish farms, and fascinating little shops.  After our tour, we thoroughly enjoyed a delicious lunch before exploring more stores and bakeries.  I was delighted to discover the very same candles Jason used to purchase for me.  The scent is aptly called Amish Country Clothesline. This evening before I lit one, I held it under Jason's nose.  He immediately said, "Jamesport".  

I imagine my sister's arms are growing weary from holding me up all these years.  She effuses a contagious joy that never fails to calm me.  She advises, coaxes, insists, and cajoles as only an older sister can.  I would truly be a mess without her.

"Good deeds have echoes." ~Amish proverb

Happy Place

Sometimes when life becomes a bit overwhelming, I escape in my mind to my happy place. I find myself on the family farm of my youth. Some of my most peaceful memories are of springtime. At the first hint of a balmy breeze, my brothers and I would bound from the confines of the house. As the bright sun melted the lingering snow, we would use sticks to form tiny tributaries from the icy puddles in our yard. This simple activity would occupy us for hours.
The return of warm weather also meant we could engage in our favorite activities. The great outdoors provided more room to impersonate Bo, Luke, and Daisy Duke who encountered various obstacles. I also had more space to twirl in my Wonder Woman swimsuit. I battled the forces of evil in this ensemble, complete with bangles, a lasso, and boots.
We spent hours exploring the grove of trees on our property. We would take turns holding open the barbed wire fence so we could squeeze through, and race across the pasture to the trees. My favorite spot was among the lilac bushes that bordered the north end. I often slipped away to this space for quiet contemplation, where the only sounds were the songs of chickadees.
Of course, the passing of years brings countless changes. Gone are the days of playing Matchbox car garage or belting out Charlie Pride tunes. We will no longer take turns on the tire swing or relentlessly search for new kittens among the dusty straw bales in the barn. While those carefree days will never return, the memories provide respite.
"Childhood is measured out by sounds and smells and sights, before the dark hour of reason grows."
-John Betjeman

Glamorous

I've come to the conclusion that I'm much too old to sleep in a chair.  When the doctor came out to talk to me after Jason's eye surgery on Tuesday, he casually mentioned that Jason can't lie on his back for one month.  He is supposed to only lie on his right side until his eye has fully healed.  I wondered aloud how this would be possible with Jason's memory issues.  I decided it might be best for Jason to sleep on the couch.  I wheeled out his dialysis machine from the bedroom, and got him settled in for the night.
Since I needed to be close by in case one of the alarms sounded on the machine, this left our chair and ottoman for my repose.  I've always longed for an antique fainting couch, so turned the ottoman sideways and tried to fashion one.  Somehow my creation fell rather short of comfort.  When I wasn't checking Jason's machine or asking him to roll over, I was searching for a cozy position.  After a mostly sleepless night, I arose with a battered back and wretched demeanor.
After two restless nights in the living room, we moved back to the bedroom last night.  We settled with our heads at the foot of the bed so he could face his machine.  I snuggled into the soft mattress, and sighed as I drifted off to dreamland.  Before my drool could hit the pillow, my dear husband began to snore beside me.  We were also instructed that he can't wear his CPAP mask for a week following surgery.  I did catch some winks between snores, checking the machine, and shifting him to his side, but still looked quite bedraggled this morning.
The past several months have been a bit overwhelming.  I've noticed the bags under my eyes have gone out and purchased new bags.  Stress and sadness have left their marks.  It's possible I haven't put much thought into my daily attire as well.  My son has threatened to stay in the car if I deign to continue wearing my capri sweatpants in public.  My flip flops have become my companions.  I am less than glamorous.  I must ask that if you happen upon me wandering the grocery store aisles...kindly avert your eyes and mumble a friendly greeting before scrambling away.
"I am well in body although considerably rumpled up in spirit." -Anne of Green Gables