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

Let Me Bring Light

Jason had an appointment with his kidney doctor this afternoon.  He is currently at 14% function, and fairly stable with lab results.  We are tweaking some medications for blood pressure, phosphorus, and parathyroid.  The next step will be a catheter surgically placed in his abdomen for dialysis.  The doctor normally prefers this be done a few weeks to a month before starting dialysis to allow the site time to heal.  She is hoping we can put this off until after the holidays. Jason has started to experience some nausea off and on, which may be an indication that dialysis will be needed soon.  She suggested we try Prevacid to see if this can buy us more time.  
We continue to be amazed by the changes in Jason since stopping his anti-seizure medicine.  This was the first year since his brain injury that he remembered the date of my birthday.  When we woke up that morning, I asked if he knew what day it was.  He replied, "You didn't honestly think I could forget your birthday, did you?"  Later he smirked and asked, "So, how's life over there on that side of 40?" Eli is slowly adjusting to the increase in attention from his father. Jason has rarely passed by Eli's bedroom door without remarking on the state of its contents.  He has also been making suggestions on how to improve Eli's occasional bouts with moodiness.  The other day when Eli didn't react after Jason asked him to do something, Jason looked at me and said, "Excuse me, honey, but does my voice work?"  
Last week, Jason's thumb paused a moment on the remote during his normal leisurely channel surfing.  While he lingered on a PBS program, I became acquainted with the Canadian Tenors for the first time.  I later found this song, which has stayed with me.  I pray for this spirit of looking beyond my own little world to actively impact the lives of those around me.

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)

A Bump In The Road

If the saying "what doesn't kill you makes you stronger" holds true, I should be developing some mighty biceps.  While Jason and I were out on Wednesday, our car started making awful noises and died in an intersection.  We enjoyed a lovely ride home in a tow truck, and hoped for an easy repair solution.  We realized this was not to be the case after our friend worked tirelessly to diagnose the problem.  It seems we've been losing oil somehow, although there were no telltale indicators such as puddles on the pavement or funky colors of smoke from the exhaust.  Although I'm not mechanically savvy, even I would not have ignored a warning light on my dash...if only it had come on.  We are now the proud owners of a 2004 car with 116,000 miles and new tires, new brakes, new spark plugs, a full tank of gas...and a ruined engine.  

 "For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord.  "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.  You will go out in joy and be led forth in peace." (Isaiah 55:8-9,12)

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)

Bubbles

I am finally finding my way out of the turmoil and uncertainty of the past several weeks.  There's a good possibility I didn't always cope well with each new stress that came our way.  I am desperately trying to simply press on.

Even with the addition of physical therapy twice a week, Jason's falls continue and have actually increased in frequency.  One morning he fell in the bathroom, and ended up wedged between the toilet and the wall.  He hit his head on the toilet, and put a hole in the wall with his elbow.  Although we encourage him to use his walker during the day, in the middle of the night he often forgets.  It's disheartening to wake up and discover new bruises that occurred while I was deep in dreamland.

We are currently making adjustments to ensure that Jason is no longer left home alone.  With school starting this week, I was concerned about being able to continue working outside of the home.  I could envision our already precarious budget crumbling.  Thankfully, with the help of a friend willing to stay with Jason, as well as the flexibility and understanding of others, we are working out a solution.

We will be going to St. Luke's for a day of appointments on September 17th to start the transplant process.  We are scheduled to meet with the transplant coordinator, do lab work, and speak with a social worker.  During the next series of appointments, we will see physicians.  

We continue to monitor Jason's kidneys through monthly bloodwork.  It has been difficult to not dwell on the future and what changes it will bring.  If only I could learn to heed my wise sister's advice and focus on each day as it comes.  Whenever I allow statistics and possible complications to cloud my mind with worry, I remind myself that I am placing limits on what God is able to accomplish in our lives.

When I was in college, two of my nicknames were Bubbles and Spagiddy.  Sometimes I wonder what happened to that carefree silly girl.  I realize that adulthood is often fraught with serious responsibilities and issues, but often long for that lighthearted spirit to return.  

"I wait for the Lord, my whole being waits, 

and in His word, I put my hope." (Psalm 130:5)

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)

It Is Well

Jason went to his checkup this afternoon.  We had thoroughly enjoyed the lengthy break from doctors' visits, but were also anxious to address some recent concerns.  While we were sitting in the waiting room, Jason asked why we were there.  When I told him it was time for a well check, he said, "I'm well, I checked...let's go home." ha  Apparently he has not forgotten the many many hours spent with doctors.
Our main issue lately has been an increase in the number of falls.  While we were getting ready today, I helped Jason get out of the shower.  Since his walker was in front of him, I felt comfortable leaving him to dry off while I left to get his clothes ready.  I soon heard one loud crash after another.  He had pulled down the shower curtain, broken a metal toilet paper stand, and landed with his bottom stuck in a laundry basket.  We decided this might be a sign that a change is needed.
I loved witnessing the little reunion between Jason and his doctor.  They have been through so much together...their mutual fondness was clearly evident.  I felt as though all our questions were patiently answered and solutions were suggested.  They said that Jason will always have mobility issues as a result of his brain injury.  When I asked if Jason might benefit from physical therapy, his doctor said it couldn't hurt, and that he would set it up.  I was extremely grateful to hear this.
We have also been noticing some significant hearing loss recently.  The television had slowly been getting louder and louder.  I decided Jason wasn't ignoring me when I talked to him, but simply wasn't hearing me.  They looked in his ears today, and discovered an abundance of wax build up.  I'll spare you the details, but his doctor spent almost an hour meticulously cleaning out Jason's ears.  I will be hiding the Q-tips now since they were likely the culprit...Jason had been using them frequently.

I felt it was a successful visit...Jason may not agree since they noticed it was time for a tetanus shot.  They also drew some blood to make sure all is normal.  We appreciate your continuous prayers and thoughtful inquiries about his well-being.  

"Whatever my lot, Thou hast taught me to say, "It is well, it is well with my soul."

Unexpected

I am eager to put this past weekend behind us, and grateful for the fresh start a new week can bring. On Saturday evening, I decided it was time to finally address the bag of clothes tucked away in our bedroom.  Inside were some of Jason's favorite things which no longer fit as a result of his weight loss while in the hospital.  I planned to list some on ebay and donate the rest to a thrift store.  Thankfully, I was alone when I first began pulling out items one by one.  Somehow I hadn't anticipated the flow of tears.  Too many memories were wrapped up in those shirts and pants.
My sister has the uncanny ability to call at exactly the right moment.  I am not a gifted actress, so she immediately sensed my distress.  She was kind enough to assure me that I was not crazy for weeping over a pair of camouflage shorts.  In keeping with her big sister duties, she helped me find perspective. How much different would this task have been if Jason was no longer here with me...if he was not at that very moment sitting on the couch eating fruit cocktail.  Meanwhile, when Jason noticed the pile of clothes later, he smirked and asked if I had decided to kick him out.
Sadly, the weekend's emotional roller coaster did not come to a complete stop.  I was deep in dreamland that night when I heard the first crash.  Jason had fallen while getting up to use the bathroom, and had landed across the room against the mirrored closet door.  Since he was wedged in a corner, it took us a half hour to get him up.  A few hours later, I heard him fall down hard against our bedroom door.  I helped him up and tucked him back into bed.  After he fell the third time, I stayed awake to help him if he needed to get up again.  I made the disheartening decision to bring his walker out of retirement.  It felt like a huge setback, but necessary for his safety.  When Eli woke up and spied it, his face fell.  I assured him it was hopefully temporary.  When I called the doctor last month after a period of falls, his nurse said it was normal to go through cycles.  Jason has an appointment next week for a well-check, so will air my concerns at that time.
"Restore to me the joy of your salvation and grant me a willing spirit, to sustain me."  (Psalm 51:12)

Balancing Act

One morning when I walked into Jason's room at Kindred Hospital, I found him gazing intently out the window.  When I asked what he was doing, he replied, "I'm just watching life go on without me."  By this time, Jason had spent three months in a hospital bed.  He had been transferred to a second facility, with the prospect of a third looming.  It must have been hard for him to imagine returning to days of going for drives instead of being wheeled to dialysis.  The idea of a life outside those walls surely seemed like a distant hope.
Although four years have passed, the struggle to keep Jason engaged in life around him continues.  I constantly strive to find the right balance between protecting him and urging him to participate in activities.  We've learned that certain risks are simply necessary.  The stairs that lead up to his mother's door must be tackled.  Over the years, we've managed to safely get him into a courtside seat for Eli's basketball games.  Although he no longer feels entirely comfortable in crowds, we encourage him to accompany us to church and family gatherings.
In the spirit of making Jason feel useful, I have turned over more tasks to him.  He is once again in charge of killing any insect that dares enter our dwelling.  He has also taken over the extremely important job of opening stubborn jars of dill pickles.  He happily folds towels and linens while watching General Hospital.  At times, the bass in his voice is the only way to motivate an eleven year old boy.       As plans are once again underway for me to take a short break, my emotions are conflicting.  I hope to ride the train to Chicago in early July.  I feel extremely eager to see my brother's new house, and spend time with his family.  I'm looking forward to quiet time on the train to read, listen to music, and write. Still, the guilt nudges me.  Jason used to love planning trips, whether our annual summer visit to Houston, or merely a quick drive to Kansas City for the day.  Eli has already started begging me not to go.  While I realize that time away is essential as a caregiver, it also means leaving them behind.

 

Bald Is Beautiful?

There are certain issues I'm able to ignore until they quietly go away.  Brake problems aren't one of them.  I'd known for awhile they were needing attention, but kept putting off getting them fixed.  I finally broke down and decided to use the last of our tax return, even though there were other pressing needs.
On Tuesday afternoon, my sister gave me a ride to pick up my car from the mechanic.  I was confused when she took a different route, but she explained she needed to run an errand for my brother-in-law.  A few minutes later, she pulled into a tire service.  I immediately spied my car sitting on the parking lot...sporting four new tires!!!  It seems someone had noticed that my front tires were completely bald, and the back ones weren't pretty either (one of those issues I'd been waiting to magically go away).  Our church family had graciously given towards this extraordinary surprise.  My nephew Caden was with us, so I assured him I wouldn't cry in front of him, but a lump rose in my throat.  I can't adequately express how it feels to be the recipient of blessing after blessing after blessing.
Later that afternoon, I grabbed Jason and his favorite cd so we could go for a drive.  I walked him around the outside of the car, and explained about another weight being lifted from my shoulders.  He was immensely grateful as well.  When Eli got off the school bus, I asked him if he could see something different about the car. I was surprised he didn't guess right away, since a lovely new tire scent still lingered.  Once again, I told the story of how our family had been shown such love and kindness.  We are exceedingly thankful.
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope..."  (Romans 15:13)

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

Not Destroyed

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."  (2 Corinthians 4:8-9)

This evening I told my sister this verse aptly describes my feelings while trying to manage Jason's disability benefits and insurance.  It seems that each time I feel as though we can breathe easier, another glitch comes along to steal my tranquility.  I found out today that our monthly benefit will be reduced in April due to unforeseen circumstances within the system.  While this came as a complete shock to me, God was already quietly working behind the scenes.  This past Sunday, our family received an anonymous gift that was very close to the amount we will be lacking.

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

Before

Last night I dreamed about Jason...from before. Before those few precious minutes without oxygen. Before the coma and the ICU. Before ventilators and feeding tubes. Before our lives were forever altered. Although these dreams are fairly frequent, I had a difficult time shaking them off today. They seemed determined to follow behind me like a stubborn shadow. Whenever I allow myself to stop and dwell on what Jason has lost, it's nearly more than I can bear. When my thoughts linger too long on what we've lost as a couple and as a family, my heart breaks. In these darkest moments, I remember that God is still working. I need only to look back and see how far Jason has come in the past four years. I find peace in knowing that He walks with me in these days...after.

Elusive

Lately I've been struggling to find daily joy.  It has been lingering just beyond my grasp.  So many around me have been experiencing profound loss recently.  Some of those closest to me have been dealt blow after blow.  I've felt inadequate to uplift and encourage.  I can only cling to the promise that God is in control even when situations are beyond my comprehension.
"Where can I go from your Spirit? Where can I flee from your presence? If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting." (Psalm 139: 7, 9-10, 23-24)

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