A Round Tuit

When I was a little girl, I took great pleasure in exploring my mom's jewelry boxes. I was particularly lucky since she had an extensive collection as a result of being a Sarah Coventry consultant. I would conduct a detailed inventory, locating all my favorite treasures. I especially admired the necklace with a girl jumping rope, and a locket filled with solid perfume. Once I'd dabbed a bit of perfume behind my ears, I would move on to find the sparkly purple bracelet and matching pendants. 
There were few traces of my dad amongst these baubles. One drawer contained his class ring, while another held his silver dollars. However, beneath the gold and pearls, was a simple circle of wood stamped with the word "tuit". This not only belonged to my dad, it epitomized his personality.

My dad thoroughly delighted in puns and word plays. His eyes lit up whenever he shared a new silly joke. Even on the most difficult days of his illness, he often managed to infuse moments with humor. During one of the visits from grandchildren in the past year, he regaled them with jokes and stories as they sat at his feet.

Dad took great joy in the simple things of life.  Freshly-tilled soil; a good sale on orange juice; a box of fluffy chicks ordered through the mail. He also found joy in the complexities of mathematics, Greek pronouns, and a challenging crossword puzzle. He spread this joy wherever he went. He gave this joy to me.
Joy has been rather elusive these past few months. Even when it makes a rare appearance, it is accompanied by bittersweet undercurrents. When Eli loved camp after his initial misgivings, I found myself wanting to share the news with Dad. I longed to call him from the train last week to recount tales of my relaxing journey. After a dear person in our lives offered to pay Eli's Christian school tuition for this year, my dad was the first person I wanted to tell. I could almost hear his usual, "Good for you!" in a voice choked with emotion.
I find comfort in knowing there were no unspoken words between us. I called him every morning after I dropped Eli at school, and often talked with him again later in the day. I am exceedingly grateful for those conversations. I had planned to fly to Houston for another visit, but ended up being just one day too late. We are continually admonished to share our feelings with those we love since we never know when it might be too late. I believe my dad would say, "Don't wait until you get a round tuit."

Lessons Learned

It seems hard to believe that we've been doing dialysis for a year now.  We have never regretted the decision to do peritoneal dialysis at home.  While it was a bit overwhelming at first, it has definitely become more of a routine.  Jason continues to feel great, and is consistently happy and content.  Our goal is still transplant, but have been struggling to get Jason to the required weight.  Because the dialysis solution contains dextrose, it can add 1000 calories per day.  We plan to be even more aggressive in the next few months with diet and exercise.  Thankfully, because of his lack of short-term memory, he doesn't realize he should already be weary of chicken breasts and salads.  We are also attending an information session on Sunday afternoon regarding bariatric surgery.  This would be a last resort.
We have learned much in the last year.
1.  It Takes A Village.  Truly.
We haven't done this alone.  Even before starting dialysis, we were armed with information.  While researching our options, I came across a blog entry written by a man who started peritoneal dialysis while in his early 30's.  He painted a realistic picture of dialysis from a personal point of view.  He literally hit the ground running after receiving a transplant, and is currently making plans to participate in his second Ironman triathlon.  He recently traveled to Cambodia as part of his campaign to raise money for a charity that helps with literacy and education.  He is an inspiration, and gives us hope.
My sister and our friend Keith attended training with us, and have graciously stepped in to help.  Our dad was diagnosed with cancer right before we started dialysis.  I felt such panic, wondering how I would be able to travel and visit him.  I'm truly grateful that I've already been able to make two trips to Houston, and feel confident that I can return.  I was able to fully focus on spending time with Dad, knowing they were taking such careful care of Jason.
We are surrounded by a strong support system.  We have grown extremely close to the nurses at the dialysis center.  They never make me feel silly when I call with questions.  They clearly adore Jason, and genuinely want the best for him.  I've been incredibly grateful for the support I receive from other members on Caregiving.com.  Our family and friends also supply unwavering encouragement.
"How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?"  (I Thessalonians 3:9)
2.  Humor Is Essential.  And In Abundance.
The past year has not been without stress.  The learning process of dialysis was rather hairy.  Thankfully, we were able to add laughter to our days...and long nights.  Since Jason is on the machine for 10 1/2 hours overnight, I'm constantly doing the math to figure how late he can stay on the couch before being banished to the bedroom.  We often still cut it close in the mornings before school.  The machine has three cycles: drain, fill, and dwell.  I scramble to help get Eli ready, while Jason keeps me apprised of the progress of the machine.  Lately I've been asking if he's Dwayne or Phil (we're still trying to think of a clever name for dwell).  
"A joyful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22)
3.  God Always Always Provides.  Always.
We honestly remain in awe of the ways God has provided for our every need.  This is not the first year we have received blessing after blessing.  In the six years since Jason's brain injury, we have been astonished at the kindness of others.  We surely have been given more anonymous gifts than anyone else in the whole wide world.  Even people we've never met have shown tremendous generosity and thoughtfulness.  God's timing is impeccable.
"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)
4.  God Sustains.  So Does My Sister.
My sister must quietly chuckle when people tell me I'm strong.  She knows the real story.  She's on the receiving end of tearful phone calls, and is an unfortunate witness to my unravelings.  Her strength and patience are boundless.  I have run out of ways to thank her for holding me up.
"For it is you who light my lamp; the Lord my God lightens my darkness." (Psalm 18:28)

Omaha

For Eli's second birthday, my parents suggested we meet in Omaha to celebrate.  They drove down from South Dakota, while we made the drive from Missouri.  We spent the daytime hours exploring the zoo, then enjoyed dinner at Valentino's Italian buffet.  The next morning found us lazily floating in the hotel pool.

This became a tradition of sorts, as we met the next couple of years to celebrate in the same way.  These days were incredibly special for Eli, and helped forge early bonds.  Of course, my wise parents knew these carefree weekends also benefited Jason and me.  We had already weathered Jason's first health crisis, and the financial stresses that inevitably followed.  These trips provided an escape for us.  How will I ever find enough words to thank my parents for all these little moments?

"You can find something truly important in an ordinary minute." -Mitch Albom

Grow In Joy

This plot of soil may look unremarkable, but it once held the rewards of much labor. Tucked behind the barn, this garden was Dad's escape, his therapy, his joy. While we were solicited to assist with his endeavors, it clearly belonged to him. At the first hints of spring, he would begin plotting and planning while thumbing through pages of the Gurney's catalog. After long days at work, he would unwind by tugging weeds or hunting for green beans. He would write sermons in his head with his hands in the dirt.
My siblings and I were less than enthused by the various tasks associated with such a large garden. My least favorite activity was following behind the tractor while Dad unearthed potatoes for our buckets. I did not enjoy shucking corn or shelling peas. I didn't understand why I must weed the okra when I would not be eating it. I longed to lounge in the house away from the sun and bugs. My brothers expressed their

displeasure by assaulting each other with dirt clods. We had the opportunity to spend countless hours of quality time together, much to our dismay.
Dad took such pleasure in sharing the bounty of his garden with others. Even after we'd grown and left the farm, we continued to benefit from his toils. We all had freezers filled with bags of corn and pantries stocked with canned homemade dill pickles. There is no other salsa that compares to Dad's.
I now find myself wishing for those quiet hours among the neat rows of plants. During recent days while Dad has been dealing with such pain, I've closed my eyes and pictured him crouched beside tomato vines.  I wish he could experience the peace and calm of those summer days. I wish his only concern was where to move the sprinkler or which kind of squash to plant.
"I think that if ever a mortal heard the voice of God, it would be in a garden at the cool of the day."
-F. Frankfort Moore

Endures All Things

The dress was tucked away in a box among picture albums and quilts in a closet.  It had made the journey in a U-Haul from South Dakota to Houston three years before.  It had been packed onto the truck along with other evidences of young love.  There was a (locked) trunk filled with letters exchanged between my parents as teens.  Other boxes contained photos of their time together at summer camp or headed to the movies in Dad's car. There were yearbooks from the time of their first date, when Mom was just 15.  Dad enjoys telling the story of inviting her to a neighboring town for rollerskating...since he needed to go to the town anyway in order to pick up a tractor part for his father.  When Mom talks about that first date, she remembers being torn between wanting to skate, and wishing to sit beside Dad on the sidelines since he lacked skating skills.
When I visited my parents a few weeks ago, Mom lifted the dress from the box while Dad was in another room.  She was pleased to see that it hadn't yellowed, and stroked the lacy sleeves.  She reminded me that her mother had spent countless hours lovingly sewing this dress.  Mom wanted to see if she could fit into it, so slipped to her bedroom to try it on while I distracted Dad.  He was delighted when she emerged to surprise him.  We quickly decided that he should find a suit jacket so we could take pictures.  He disappeared, and returned not only with a jacket, but a shirt and tie as well. When he reached for her hand in an attempt to recreate a ring exchange, I witnessed one of the most touching moments I've seen.  The pictures don't show that Mom's dress didn't quite zip up the back.  You can't see that Dad was still wearing his gym shorts from the waist down.  The pictures simply tell of a love that bears all things, believes all things, hopes all things, endures all things.

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)