Even Though I Don't Know You, I Still Love You!

Over the past few months, blessings have been heaped upon our family.  While this time of year is often magical, we have received unexpected gifts in abundance.  God continues to sustain us in enormous ways.  We deeply feel the generosity of others.
A couple months ago, we began receiving encouraging notes from a church in Bellevue, Nebraska.  It was incredibly comforting to know we were being lifted in prayer.  Many of the members haven't even met our family.  We recently learned this congregation took up a special collection.  Our family was one of those chosen to be blessed through this.  We feel the peace of knowing money is set aside for the months ahead when I will be unable to work.  
A dear family friend sent a gift with strict instructions to me.  Her note read, "I want you to use half of this money on yourself-a massage or a new dress, whatever.  I insist-for your own health."  I felt extremely touched by this rare treat.  I must admit to a certain weakness for beauty and hair products, so was quite happy to indulge a bit.
It seemed each trip to the mailbox produced delight.  One day brought a Walmart gift card from a family member.  I was able to make a substantial dent in Eli's wish list with this.  Another day brought gift cards from the church of my youth.  The next day brought yet another gift card from the very same church of my youth.  These will be essential in helping us through the months ahead.  
When my parents were here this week celebrating the holidays, they brought an envelope for us.  A couple they worship with in Houston always helps someone this time of year, and decided to bless our family.  We received another tremendous gift from someone we've never met.
A few months ago, I was told about a program called Coins For Christ.  The children at a congregation in York, Nebraska collect coins, and find ways to bless others.  I was so pleased to hear they had chosen to collect for Eli.  I sent a picture of Eli so they could put a face with his name.  These sweet children prayed about Eli for months.  A package arrived the week before Christmas, filled with cards made by the children. These cards were overflowing with precious words such as, "God is faithful"..."Even though I don't know you, I still love you"..."Have hope".  One child wrote, "I don't know how it feels, but I know it is hard."  Eli read each word on Christmas morning.  A check was included for our family.  That must have been one heavy jar of coins!
There are not enough ways to express our gratitude.  We know the new year will bring changes for our family.  We feel fortified to face them, secure in the knowledge that we are not alone.

“Feeling gratitude and not expressing it is like wrapping a present and not giving it.”― William Arthur Ward

Too Many To Declare

God continues to provide for our family through the overwhelming generosity of others.  Before we can even anticipate or express a need, it is abundantly met.  Today our family received an extraordinary gift from the church in Vermillion, South Dakota.
My dad began preaching for this congregation when I was around eight years old.  We were an extremely small group, often numbering less than thirty.  We grew to be as close as family over the years.  Not only did we spend hours together each week during worship, we also orchestrated frequent get togethers.  I have wonderful memories of playing flag football in our cow pasture, volleyball wherever we could set up a net, and croquet in back yards. We ate banana bars and jello topped with bananas and Cool Whip.  We took advantage of the extra snowfall by sailing on a sled...which was attached by a chain to a surprisingly fast tractor.  One of my favorite activities was playing hide and seek in the pitch black cornfields close to our farm.
These friendships formed so long ago have stayed with me through the years.  Even without seeing each other often, the feelings endure.  When my grandma passed away two years ago, our friends from Vermillion drove to Nebraska for the funeral.  I honestly cannot express how much this display of support touched us.  Those relationships we weave in childhood can help sustain us when life unravels.

"Many, Lord my God, are the wonders you have done, the things you planned for us. None can compare with you; were I to speak and tell of your deeds, they would be too many to declare." (Psalm 40:5)

Be With Me, Lord

My earliest childhood memories of church took place inside a big white building in Yankton, South Dakota.  My sister and I sat ever so quietly on a wooden pew, since Dad had a great view from the pulpit to observe our best behavior during his sermons.  The song leader knew of my affection for hymn number 31, Be With Me, Lord, so sent a smile in my direction each of the numerous times he led it just for me.  After services, we happily soaked up attention from everyone around us.  One man used to love to tug on my pigtails, while another teased us by calling my sister and me "boys" every chance he got.  We enjoyed potluck dinners downstairs, and grew to expect tater tot casserole and taco salad.  Before leaving for home, the adults would chat inside while we escaped to the front steps and lawn to play with our friends.  During these years, not only did I learn that Zacchaeus was a wee little man, but also the meaning of growing in love one toward another.
Although years and miles separate us now, I still strongly associate this congregation with the word "home". They have continually prayed for our family over the years as we faced various trials, and reached out to us over and over again.  Today we received a tremendous gift from them to help with our recent struggles.  We are immensely grateful.

"Be with me, Lord, I cannot live without Thee,
I dare not try to take one step alone,
I cannot bear the loads of life, unaided,
I need Thy strength to lean myself upon."

While I've since learned her first name was Ella, as a child I only knew her as Sister Craig.  I've still never tasted homemade bread as good as hers.

One of my first friends at church.

Close buddies.

Blessed Beyond Measure

I can't let another day end without expressing gratitude to those who walked with us these past two weeks.  During the long hours of Jason's initial transplant appointments, a friend sat with us.  His presence was calming and reassuring.  Another friend made time in his busy schedule to investigate the noises under the hood of our car.  When it became apparent that our engine had breathed its last, my dad and brother-in-law stepped in.  Since I was simply unable to focus at that time on a solution, they quietly worked behind the scenes to decide whether we should repair our car or purchase another one.  My sister handed me the keys to her van to use as long as I needed.
My mom came to stay with Eli so I could be with Jason while he was admitted for evaluation.  She bravely tackled the linen closet, which was the scene of my defeat in the battle against folding fitted sheets.  She organized the pantry and once again made the kitchen sink shine.  She helped with homework, made meatloaf which was deemed better than mine (which, believe me, is no small feat), and initiated special chats at the bus stop each morning before school.
After we received the decision about transplant, I went for a walk to make some phone calls.  As the elevator doors opened, friends waited just on the other side with comforting hugs.  They stayed throughout the lengthy process of discharge, which finally occurred long after Jason had gotten dressed in anticipation.  They brought us home after fortifying us with Winstead's burgers.
We picked up our car from the repair shop today.  She'd had quite the makeover, with years shaved off her life by an engine with a mere 52,000 miles.  Before I'd even had time to work out a repayment plan with my parents, we received an overwhelming anonymous gift to help cover repairs.  After we returned from a drive, a friend delivered a beautiful basket to our home.  Friends from church had loaded it with lovely goodies and encouraging notes.  We are continually blessed beyond measure.
We had an appointment with Jason's kidney doctor last Thursday.  St. Luke's had felt Jason was ready for dialysis, and were actually planning to begin while he was admitted had we ended up staying another day.  His kidney doctor, however, feels we can wait a bit longer.  She told us that recent studies show there is no benefit to starting earlier.  She hopes to put it off until he reaches 10% function...he is currently at 15%.  At this point, I am still planning to do dialysis at home.  We haven't completely ruled out the possibility of seeking another opinion regarding transplant.  While he was at St. Luke's, Jason's labs showed a toxic level of Dilantin (anti-seizure medicine) in his blood, caused by his kidney failure.  This likely explains his recent increase in falls and lack of balance.  We are tapering off the medicine with hopes of stopping it altogether.  We pray this improves his mobility.

"Yes, my soul, find rest in God; my hope comes from Him.  Truly He is my rock and my salvation; He is my fortress, I will not be shaken." (Psalm 62:5-6)

He Shall Sustain Thee

Jason was admitted to St. Luke's on Monday to undergo evaluation for transplant.  Before he had even settled in with the tv remote, someone arrived to take him for a chest x-ray.  A whirlwind of activity followed with a myriad of tests and a constant flow of medical teams into his room.  We told the story of his health history over and over again.  As the test results came back, each medical team visited with positive results.  He was eventually cleared for transplant by cardiology, neurology, pulmonology, endocrinology, and hematology.  We grew more hopeful by the hour.
Around noon on Tuesday, we met the transplant surgeon for the first time.  Although she was extremely kind and genuine, the news she delivered was devastating.  She told us the transplant team had decided the risks associated with surgery and recovery were too high for Jason.  They were concerned about him falling after surgery, since the new kidney wouldn't be well-protected.  She also expressed concern about bleeding since Jason's on a blood thinner for a clotting disorder.  Finally, she indicated that the anti-rejection medication could exacerbate his memory issues, and impact his quality of life.
We returned home later that evening to a little boy eager for news of his dad.  We have been trying to process and come to terms with our profound disappointment.  We appreciate your continued prayers for peace and strength.
"Cast thy burden upon the Lord, and He shall sustain thee; He shall never suffer the righteous to be moved." (Psalm 55:22)

Full Steam Ahead

The date that had been staring at me on the calendar for weeks finally arrived yesterday.  We spent a full day at St. Luke's in Kansas City.  We started the morning in an educational class absorbing general information about kidney transplants.  Our next appointment was with our own personal transplant coordinator.  She went over Jason's health history and more details that were specific to him being considered as a candidate.  After a stop in the lab for bloodwork, we had an appointment with a financial specialist, followed by a meeting with a social worker.

The national average time on a waiting list is three to five years, while this hospital's time is closer to just one year.  Our coordinator told us that one patient was placed on the waiting list, and received a kidney the very next day!  She told us there was even a possibility that Jason could have a transplant before he reached the point of needing dialysis.  

As part of the continuing evaluation process, Jason will be admitted to St. Luke's next Monday.  He will stay for three or four days while being seen by physicians and undergoing further testing.  We are making arrangements so that I can stay there with him during this time.

We feel blessed to be surrounded by unfailing support and concern.  We appreciate all the prayers on our behalf.  The road ahead doesn't seem nearly as steep since we're being held up on every side.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory." (Ephesians 3:20-21a)

Reprieve

I went to the dialysis center on Friday to become educated on the different types of dialysis.  The nurses were incredibly compassionate and informative.  I felt very much at peace with my decision of peritoneal dialysis.  This will enable us to do dialysis at home every day, as opposed to three times per week of hemodialysis at the center.  This will work more like Jason's own kidneys, so hopefully he will feel better overall.
The nurses indicated they would be scheduling the procedure with a surgeon right away to place the dialysis catheter in Jason's abdomen.  A little voice inside my head cried, "Please slow down; I'm not ready!"  Even though I'd had weeks to mentally prepare, I still didn't feel adjusted to the idea.  I was extremely emotional over the weekend, and prayed for that elusive peace to return.  Last night before I drifted off to sleep, I remembered my favorite parts of Isaiah 55..."My thoughts are not your thoughts, neither are your ways my ways" and "You will go out in joy and be led forth in peace".  I felt calm in the security of these promises.
Jason had an appointment with the kidney doctor again this morning.  I went in armed with my questions and ready to face the next steps.  After we spoke at great length about dialysis, she granted the wish I hadn't even dared to voice aloud.  She's decided to wait and see how long Jason can remain at his current level of kidney function before starting dialysis.  She will continue to monitor monthly labs, and is changing a few medicines that might help him retain more function longer.  She told us he may be able to wait as long as six to eight months!  The doctor is also getting in touch with St. Luke's Hospital to start the process of determining if Jason is a candidate for transplant.
We are extremely grateful for this reprieve.  Before school starts, we're going to plan a family road trip, even if we just get away for the day.  We so appreciate all the expressions of concern and support we've received.
http://www.webmd.com/a-to-z-guides/peritoneal-dialysis-4391

All Aboard!

After receiving the news about Jason's kidneys, I had a difficult time deciding whether to proceed with my travel plans.  As the prospect of home dialysis and transplant became real possibilities, I realized this might actually be the best time to take advantage of this opportunity.
Since I'm rather pitiful about flying, my thoughtful brother purchased me a train ticket.  On the trip to Chicago, I had my very own private room in the sleeping car.  I truly felt like a pampered queen.  Meals were also included, so I strolled to the dining car for a leisurely breakfast and lunch.  I had planned to spend the seven hours on the train reading, writing, and listening to music.  I found myself simply decompressing and gazing out my windows.
I delighted in spending time in my brother's new home.  He and his family live in a lovely peaceful neighborhood.  My sister-in-law and niece purchased bouquets of flowers for my bedroom and bathroom.  I  became quite the spoiled house guest, and was lavished with hugs and chocolate cake.  I loved walking to a nearby park and seeing my brother race his daughter on the swings.  I was able to try several new restaurants, and discovered a new favorite in Maggiano's Little Italy.
On Monday morning, we ventured into the city.  It was extremely interesting to walk downtown among the bustling crowds.  I thoroughly enjoyed our time at Navy Pier, where we explored little shops and ate Italian ice.  Naturally, I didn't brave the giant Ferris wheel, although my fearless niece did so with glee. We rode a water taxi beneath the giant buildings on our way back downtown.
Before I jumped the train for home Tuesday morning, my niece said we needed to play something quick and special.  We played "store", one of her favorite activities.  After she loaded her plastic shopping cart to overflowing, I rang up her purchases on the cash register.  It was the perfect ending to a fabulous visit.
The trip home flew by with the blur of farmland and trees out the windows.  My amazing sister fetched me from the station, and delivered me safely home to my sweet family.  I was greeted by Jason and Eli sitting on the couch holding flowers and a welcome home sign.  I quickly noticed my sister had cleaned our whole apartment from top to bottom.  While I was off indulging in deep-dish pizza, she was scrubbing our shower and shampooing carpets.  I keep finding more areas she transformed with hours of labor.  I feel as though I've been given a fresh new start.
I am thankful for friends who brought lunch for Jason and Eli while I was gone.  Eli was thrilled to be invited on a miniature golf outing with friends.  I am exceedingly grateful to my family for continually going above and beyond to show their love for me.  I have been blessed beyond measure with such a strong support system.  I feel refreshed and prepared for what lies ahead.
"Bless the Lord, O my soul, and all that is within me, bless His holy name."  (Psalm 103:1)

19%

We were finally able to talk with the kidney specialist this afternoon.  Thankfully, we were able to see the same one who took such good care of Jason last time.  She wants to run further tests to try and determine the cause of his abnormal lab results.

Jason will have a kidney ultrasound next Thursday morning.  She wants to look at the size of his kidneys, as well as the blood flow into them to rule out any blockages.  We will also do more bloodwork next week, checking his phosphorus level and thyroid.  She told us that thyroid problems could reduce blood flowing to his kidneys.  We will also take in a urine sample when the lab opens after the holiday. This sample would show any signs of infection, and if proteins are leaking into his urine, which would be further indication of kidney disease.  She is unable to see any glaring reasons for his kidney failure.  His diabetes and blood pressure have been well-controlled since coming home from the hospital.

We were told that Jason currently has 19% kidney function.  She said she normally refers patients for a kidney transplant when they fall below 20%.  If these tests don't show a treatable or reversible reason for his poor kidney function, this will be the next step. She has already started the process, and asked if we have a preference of facilities in Kansas City.  The waiting list for a donor is 2-3 years (although I would be tested as a match), so he would be on dialysis during that time.   He would begin dialysis when his function reaches 10%.  She gave us information  about doing dialysis at home this time. 

We are incredibly grateful for the texts, calls, messages and countless prayers over the past few days.  We would ask that you continue praying as we wait for more answers. 

"No longer forward nor behind

I look in hope or fear;

But, grateful, take the good I find,

The best of now and here."

~John Greenleaf Whittier

Need

We are in need of your prayers.  When Jason went in for his check up recently, some of his lab results were abnormal.  We went today so they could do follow-up bloodwork.  His doctor called me this afternoon to say that Jason's kidneys are shutting down again.  He said we need to see a specialist sooner rather than later.  The earliest he could get us in was July 3rd.  Please pray as we face this...he's already been through so much.

"I lift up my eyes to the mountains-where does my help come from?  My help comes from the Lord, the Maker of heaven and earth."  (Psalm 121:1-2)

Abundant Joy

God continues to abundantly provide for the needs of our family through the kindness of others.  This past week, we received an extremely touching gift from a dear friend at church.  She has consistently been an encouragement to us over the past several years.  We are so grateful for her unwavering support.

On Friday, my sister gave me an envelope with strict instructions not to open it until Easter.  She seemed to be implying I lack self control in such matters, ha.  Luckily, I'm a chronic night owl, so ripped it open at 12:01am.  Inside I found an Easter card where someone had written, "You are a blessing to so many people, may those blessings be returned to you ten-fold."  The envelope also contained a generous gift to our family.  Although I have repeatedly harassed my sister, she refuses to disclose the origin of this blessing.  Anonymous gifts are difficult for me since I'm unable to squeeze the amazing people who send them (hmm, maybe that's why they wish to remain anonymous?).  Our family is exceedingly grateful to you, whoever you are.

Through many frustrating phone calls and mountains of paperwork, I believe we have taken the necessary steps to resolve our issues with Jason's benefits/insurance.  For some reason, this review process has been incredibly difficult every year.  This year was especially stressful since it had such a negative impact on our monthly budget.  I can only pray that it will be easier in the future, and that I don't allow myself to give over to worry before knowing the final outcome.

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.” 

― Corrie ten Boom

Joy Comes In The...Afternoon!

This afternoon the mailman delivered joy to my door...in the form of a package from Aunt Kathy.  I was thrilled to discover she had painted something especially for me.  She and I have both been encouraged by this quote that I mentioned in a previous blog.  My aunt is a wonderful artist who has brought precious memories of my grandparents to life on canvas.  I was so touched that she not only sent it to me, but that she had created it herself. 

"Scatter joy!"  ~Ralph Waldo Emerson

Time After Time

My definition of love has changed over time.  I remember the first time Jason told me he loved me.  We were in the middle of a marathon overnight phone call, acting like teenagers even though we were well past those years.  The days that followed were filled with excitement and carefree joy.  When he brought a gumball machine ring to my apartment and knelt in front of me, I understood the meaning of a deep lasting love.  As he held up our baby boy for the first time so I could count his fingers and toes, my heart was filled with a hope for our future.  Whenever we faced struggles in our lives, Jason's love was protective and unfailing.  While he lay in a hospital bed hooked up to tubes and machines, I was overcome with a desperate love at the thought of spending the rest of my days without him.  Today when I looked over at his face, I realized he is the culmination of every love I have experienced.  When the fireworks and drama fade away, there is a quiet contentment that moves in and fills the space.

"But love, I've come to understand, is more than three words mumbled before bedtime.  Love is sustained by action,  a pattern of devotion in the things we do for each other every day." 
 -Nicholas Sparks

Joy Comes In The Morning

I heard this song tonight while cleaning our church building.  I used to listen to it over and over while driving back and forth to the hospital.  Twice a day during shift change in the ICU, we weren't allowed back in Jason's room.  In the mornings, I would often take this time to race home and shower before quickly heading back so I could be first in line when they opened the doors.  I felt something akin to a panic attack each time I left him even for this short period of time.  I would walk out of the hospital while the sun was beginning to rise, and marvel that life outside those four walls seemed to be business as usual.  I felt overwhelmed wondering what the future held for our family.  As the first notes of this song began to play, I would feel a calmness come over me.  While I navigated the streets home, I quietly handed my turmoil and doubts over to God.
"Weeping may endure for a night, but joy comes in the morning."  (Psalm 30:5)

Untie The Ribbons

Toward the end of November, my brother sent me a picture in an email.  He'd been walking through a German market on the streets of Chicago, and spied a cuckoo clock display.  I replied to his message by telling him the picture made me very sad.  I also jokingly asked him to please get me one after seeing the hefty price tags.  He answered, "You are the only person I know who'd actually want something that would make you sad."  I still haven't quite decided if he was implying I'm much too sentimental...or simply odd.
Even my earliest memories of my grandparents' house include their cuckoo clock.  I never outgrew the wonderment of waiting for the door to open so the cuckoo could emerge to sing its song.  Bedtime at their house always filled me with a sense of peace and contentment.  As the house grew quiet, Grandma would sit at the kitchen table to record the day's events in her diary.  Each night, she faithfully wound the cuckoo clock.  I can still close my eyes and picture her standing in her robe as she pulled on the chains.  The sheets and blankets at their house had a unique wonderful scent.  I would crawl into bed secure in the promise of happy dreams.
Our family celebrated Christmas in Houston this year.  I ended up staying home with Jason, and sending Eli with my sister's family.  After their return, my sister presented me with a wrapped box from my brother.  When I tore off the paper and lifted the lid, I was truly stunned to see a beautiful cuckoo clock of my very own.  (Ok, yes I cried)

"Each day comes bearing its own gifts.  Untie the ribbons."  ~Ruth Ann Schabacker