All Is Well

While wandering the grocery store aisles the other day, my eyes fell upon a carton of butter brickle ice cream.  I rarely buy ice cream, especially since Jason can't have it right now.  As the cashier was ringing it up, I blurted out that butter brickle had been my dad's favorite.
My grief seems to ebb and flow in no particular pattern these days.  There are periods when I simply don't allow myself to think about my dad since it's too painful.  There are other days when I wish to talk about him to family and friends who are gracious enough to listen...and to complete strangers, apparently.  It's been difficult sharing my thoughts with Jason, since he's not able to remember that we lost Dad.  It seems selfish to remind him again and again, just so I can share my feelings.
There are times when I'm able to laugh about puns that he would have enjoyed.  I can happily reminisce with my siblings about memories of him. However, there are still certain hymns that cause me to quietly flee my pew in search of tissues. There are still times when I just wish to hear his voice.
I know we are told not to grieve as those who have no hope.  I know that death has no victory; no sting.  I find immense comfort in the promise of being caught up together in the clouds to meet the Lord in the air.  I pray that I can eventually feel entirely at peace.

"I am but waiting for you, for an interval, somewhere very near, just around the corner.  All is well." -Henry Scott Holland

My Whole Being Waits

We have adjusted to in-center hemodialysis for the most part.  It's hard to believe that six months have passed since we switched.  We have grown to appreciate the nurses and techs who take such thoughtful care of Jason. When he first started on the nocturnal schedule, he was on treatment for eight hours from 8pm-4am.  We were eventually able to request an earlier time, so started going from 6pm-2am.  Since his labs were always good, they ended up cutting his treatment time to seven hours.  We initially chose nocturnal dialysis because patients generally feel better when fluid is removed more slowly.  It was my hope that Jason would sleep through his treatment, so the time would pass more quickly.  He still hasn't been able to fall asleep at the center.  After talking with his doctor, she thought Jason would continue to do well on a shorter treatment time.  This week we decided to switch from nocturnal, and try a new schedule.  He's now going from 5pm until 8:30pm.  He seemed quite pleased to learn that he would be going home sooner.  I'm fairly certain that school mornings will be less blurry for me as well.
We went to KU last Tuesday to finish updating Jason's tests for transplant.  He'd already been cleared by cardiology after recent extensive testing.  When we went through this same process in 2013, they approved Jason in all areas except weight.  They'd placed him on hold on the transplant list until he lost the weight he'd gained from peritoneal dialysis. Since switching to hemodialysis this past April, he's already lost nearly fifty pounds.  Because of this, we were extremely hopeful going into the appointment last week.  We were certain we'd conquered the last hurdle in his way.
We spent the morning in a series of appointments before his labs and scans.  Once again, we met with a social worker, pharmacist, financial advisor, dietitian, nurse practitioner, kidney doctor, and transplant coordinator.  It felt like a simple review of information until we met a different kidney doctor, who hadn't seen Jason previously.  She had many questions regarding his hospital stay in 2008, primarily the blood clotting disorder which was diagnosed at this time.  She also expressed concerns about his short-term memory loss since he'll need to take anti-rejection pills daily.  I assured her that I've effectively managed his medications for the past seven years.  She told us she wanted to further study his medical records from 2008, as well as speak to his physicians from that time.
The transplant team normally meets every Wednesday to decide which patients to list for transplant. Yesterday was long while waiting for a phone call.  Today was longer still.  Finally, this afternoon I decided to try an email since I couldn't imagine not knowing all weekend. I received a reply that said his transplant coordinator had been out of town for a conference...so they didn't discuss Jason this week. It went on to say that the meeting for next week is cancelled. So we shall hopefully have news sometime in October.  Sigh.  

"I wait for the Lord, my whole being waits, and in his word I put my hope." (Psalm 130:5)

Conrad

After I graduated from college, I found myself uncertain of my next venture. I wasn't sure how to apply my studies of the Old Testament or the Greek language to a profession. I ended up moving back to the quiet South Dakota countryside. I've previously referred to the years that followed as my flailing period. Even though I was employed during this time, I lacked any concrete ambition or direction.
This all changed in the summer of 1997. Mom and I traveled the roads to Missouri, our anticipation growing with each passing mile. I sat clutching a stuffed Curious George monkey, which was the start of many gifts for my nephew Conrad. I still remember racing down the hospital hallway to greet him for the first time.
I soon began making weekend road trips to Missouri since I missed his tiny face. I no longer had doubts about where I wished to reside, so filled out job applications whenever I visited. I was delighted when I was finally able to make Missouri my home.
I am entirely grateful that I had a front-row seat over the years to watch Conrad grow up. I sat beside him on church pews, trying to keep him quiet and entertained. I sat on the grass while he patiently waited for fish to bite his line. I sat as he won awards for correctly moving his bishops and pawns on a chessboard.  I sat proudly as he led hymns on Sunday mornings.  I sat on a lawn chair as he trotted horses to win ribbons. I sat nervously on a hospital chair, waiting for a surgeon to remove his appendix.  I sat on bleachers and clapped as he made free throws.  And, on Saturday, I sat with teary eyes as the tassel on his graduation cap was moved to the other side.

Transition

Jason made the switch to in-center hemodialysis last Wednesday.  They wanted him to start with treatments during the daytime, when there were more nurses available in case issues arose.  He saw the kidney doctor today, who felt he could go ahead and move to nocturnal treatments, possibly as soon as this Friday.  The nocturnal treatments will likely be from 9pm-4am, although a nurse today indicated that he may stay up to eight hours.  Since these treatments are longer and slower, they are more gentle on his body.  He will sleep at the center three nights per week.  It is our hope that he will continue to feel as well as he has the past two years on home peritoneal dialysis.
Even though he's been more than ready to escape the chair at the end of his treatments, Jason has done well so far.  We've made adjustments to his diet and fluid intake, which are both more restrictive than before.  Our ultimate goal is still transplant, so we feel as though this change is a step in that direction.  We are optimistic that he will be able to lose weight more easily.  We are praying for an easy transition, and for his contentment in the days ahead.

Broken Together

Since first hearing this song a few weeks ago, I've been unable to shake some of the lyrics.  Even though the song is not entirely applicable to our marriage, I was still affected by the message.  When Jason and I exchanged vows, we were hopeful about our future together.  Now, almost fifteen years later, we both have scars.  Jason's physical scars tell a story of trach tubes, biopsies, feeding tubes, surgeries, and dialysis accesses.  While my scars are less visible, the years have left their mark on me as well.  During those early years after Jason's brain injury, I experienced loneliness and mourned the loss of the easy companionship we once shared.  Time has graciously brought healing to each of us.  Instead of grieving the losses in our marriage, we are learning to embrace the changes and appreciate the many gains. 
"The only way we'll last forever, is broken together."