Folding bikes, sunshine and hope for transplant.

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Folding bikes

Have you ever seen a folding travel bike? They’re pretty cool little engineering marvels. They are perfect for zipping around small areas and sightseeing. When you’re done, you fold them up, throw them in the trunk and head home.

Robin and I spent a few hours on these two little bikes yesterday afternoon covering 14-16 miles. We cruised around a beautiful lake in Kissimmee, Florida and then loaded them back into the car and headed across town to explore Celebration.

I always feel a bit strange pulling into the entrance to Celebration. It was in Celebration, at Florida Hospital on May 4, 2011 where a doctor with terrible bedside manner dropped the transplant bomb on me. She was so matter-of-fact, like an auto mechanic telling me my car needed tires, except she was telling me I was dying.

That was more than four years ago. Some days it feels like ages ago and other days it feels like yesterday. Today it felt like both. I felt a little anxious driving past the hospital entrance. I flashed back to my days there and remembered that the goal was to get me stable enough to fly home to get on the transplant schedule at Lahey Clinic. I remembered making small talk with the Jetblue agent who wheeled me through the Orlando airport while Robin walked behind. It felt like yesterday.

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Then,  just a couple hours later, it felt like ages ago while Robin and I laughed and ate ice cream at Kilwin’s after exploring the streets and trails of Celebration on my sister’s old rusty, old, folding bikes. We pedaled just under 11 miles in 90 degree heat. Our total mileage for the day was somewhere around 15.

Last week I spoke with a new friend who is new to the transplant list. He is at the very start of his journey like I was just yesterday but so long ago here in Celebration. He had so many questions and what ifs to go through with me. I could hear the unsteady wavering of uncertainty in his voice and was struck once again by the fact that his primary concern was not his own survival but the wellbeing of his family. He voiced what I remember first saying in that Celebration hospital, “it’s too much money, I’ve had a lot of good years, why should I go through with it?”

That thought will only get stronger while he waits and his condition continues to decline. He feels sick now but I didn’t have the heart to tell him that his days will get much, much worse if he is like the majority of us. Instead, all I could tell him was what I continue to learn on this journey; life is good and worth fighting for.

That’s easy for me to say now but back then it appeared to be far from true. Back then it looked like financial ruin and pain were the only certainties. When you fill your time doing Google searches trying to get an idea of your chances of survival, hope is tough to find. When you see pictures of your yellow self on smartphones and Facebook you can’t help but get discouraged.

I gave my new friend the same message I give every transplant person I talk to. I told him that I found Hope in faith, strength in honest prayer and peace that had little to do with my survival. I told him how I went through being angry at God, discouraged and defeated and somehow emerged being determined to PUSH on.

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My girl

Sitting at a table shaded by a large, red, canvas umbrella outside a quaint, little, overpriced touristy shop with the girl of my dreams, enjoying every taste of hot fudge and chocolate swirl ice cream less than a mile away from where life came to a screeching halt just over four years ago, I felt thankful. Since my transplant on May 7, 2012, my girl and I have attended three more graduation ceremonies where our children received degrees and advanced degrees. We’ve cried sweet tears seeing them celebrate their weddings and anniversaries. We’ve run and biked hundreds of miles, traveled thousands of miles and sat on tropical beaches. And now, this girl who started standing next to me 34 years ago and I, are shopping for adorable little outfits and getting ready to be Nana and Grampa.

Sitting here watching the sun come up this morning in Kissimmee, enjoying a couple weeks of vacation from the job I love so much that I don’t think of it as a “job” at all, I look back at the waiting, the decline, my transplant and the pain of recovery as the hardest challenge I have ever faced. It was brutal. It was awful. I wouldn’t wish it on my worst enemy. But, hear me clearly my friends who are waiting, if my liver went into rejection right now and I needed another, I would do it all again because of how good life can be.

I know it’s hard. I know it sucks. I know what it is like to be awake all night and asleep all day. I know what is like to have drains poked into you and watch bottles fill with liters of fluid. I remember the foul taste of Lactulose and the humiliation of adult diapers. I lost days to encephalopathy and didn’t know if it was day or night. I know the frustration of being a number in a medical maze where you just want to feel like someone will listen to you rather than talk about you like you’re not even there. I know what it’s like to lose your job, your savings, your house and your retirement. I know setbacks and the disappointment of being taken off the list, too sick to survive, and later bouncing back to regain your spot. I get it. I understand.

All that is not even worth comparing to the full life I have now. Transplant is worth it.

I like that I get to talk with so many people and families at the start of their transplant journies. I like that I get to tell my story and encourage people to register to be organ donors (www.donatelife.net). Please, if I can encourage someone you love, try to answer any questions or just be an understanding ear to listen and understand as you vent, don’t hesitate to contact me. Please don’t give up. Keep PUSHing.

I’ll PUSH with you.

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. Romans 8:18

Posted in chronic illness, depression, End Stage Liver Disease, facing death, Fatty liver, Fatty Liver Disease, Lahey Clinic, Liver disease, NASH, organ donation, Organ transplant, transplant, transplant recovery | Tagged , , , , , , , | 1 Comment

Evidently I will be a short-lived failure as a pastor

I don't like altar calls. Does that make me bad?“So, like, what do you actually do all day?”

It’s a fair question. People call me “Pastor.” It’s not a title I especially want but, it’s mine because of what I do now. When I worked with students, few people called me “pastor” because, for some reason, youth work is somehow perceived as less pastorlike.

Don’t misunderstand, I absolutely love my life and what I do, it’s just that a lot of odd thìngs cling to the pastor title. For example, my head tilts to the side in disbelief when someone calls me a “man of God” or a “man of the cloth.” I have no idea what to do when my catholic friends call me, “father” and ask about mass.

I’m a guy who snaps at my wife when I’m tired, gets angry when people cut me off in traffic, says naughty words when I stub my toe, craves cold beer with buffalo wings, covets cool new electronics and likes violent movies with lots of special effects and explosions.

I feel the same awkward inadequacies in finding the words to say when I hear someone has cancer or lost a loved one. You know how you feel empty and don’t know what to say when that happens? Me too.

But here I am, approaching two years of enjoying the privilege of sharing life, – messy, exhilerating, exhausting, ever-changing, grace-saturated life – with a bunch of people who, just like me, are doing their best to navigate life by living like Jesus. They asked me to take the point position, the head coach slot, and with that came the title I wear uncomfortably: “Pastor.”

When I read the ancient writings that shape my life, I see the “pastor-shepherd” position and I think, “yeah, that’s what I want.” But when I look around and see pastors making self-elevating moves, demanding respect by position or believing they truly are God’s annointed messengers, I cringe. I don’t want any part of that.

“shepherd the flock of God that is among you, exercising oversight, not under compulsion, but willingly, as God would have you; not for shameful gain, but eagerly; not domineering over those in your charge, but being examples to the flock.” 1 Peter 5

I get that. I especially am growing to understand “eagerly.” This flock that I lead is imprinting on my heart. Though I am away on vacation, my first thought as I woke today was, “I wonder how Brady is feeling today after his surgery?” It’s a strange thing, really. I walked the dogs and prayed for my daughter Shara right along with little Brady. I prayed for Josh and Kristen and then Shelby came to mind. Then, “Lord, give the Morton’s an awesome summer of bonding in that little camper.” I prayed for my wife for a relaxing vacation and for my Mom’s shoulder pain.

They weren’t long, wordy prayers but more of a running conversation. The thing is that my “flock” is right there with Shara, Josh, Kristen, Robin and my mom. I’m not related to little Bradyman, or Shelby or the Mortons but they are right there on my mind with my family. I think the shepherd piece that the bible describes, writes people’s names on your heart. It’s the exact opposite of the counsel that a wise, old pastor gave me right after I accepted this position. He told me that the key to longevity and being a successful pastor is “to keep people at arm’s length. Don’t get too close.”

I’m eager to connect with the people who call me pastor but the thing is, the title does not create that eagerness, it is the eagerness that brings the title. I was a pastor before I got the title. Does that make sense? We have a number of “pastors” in our church family who care, shepherd, guide and invest in others without pay. I just happen to be in the point position.

But, this pastor gig still puzzles me after nearly 2 years of getting up every Sunday morning wondering what it is about me that qualifies me to stand up in front of the 120 or so people who will come sit on hard, wooden benches for an hour.

Reading from The Message this morning I came across Ephesians 3:8-10

7-8 This is my life work: helping people understand and respond to this Message. It came as a sheer gift to me, a real surprise, God handling all the details. When it came to presenting the Message to people who had no background in God’s way, I was the least qualified of any of the available Christians. God saw to it that I was equipped, but you can be sure that it had nothing to do with my natural abilities.

8-10 And so here I am, preaching and writing about things that are way over my head, the inexhaustible riches and generosity of Christ. 

Bam! That’s it exactly.

So, back to my friend’s question asking what I do all day. The truth is, sometimes I have no idea what I do. I’ll get to the end of a busy day and then feel like I didn’t accomplish anything. Sure, I have my routine things that happen week after week on certain days but most of my schedule is pretty fluid.

I joke that I only work 30 minutes a week and then sing for another 30 on Sunday mornings. Pastors only work on Sunday, right?

So, what do I actually do? I’ve been trying to figure that out so I know how to answer the question. I’m starting to think there is no easy answer.

I spend a bunch of time working on what I am going to say on Sunday mornings. I read a lot, look for resources, plan illustrations and outline it all in Powerpoint. Sometimes I’ll spend as much as 15 hours shaping, reshaping, tossing things out and then starting over. Other times I’ll spend maybe 5 hours total when everything just flows.

Then, I get the luxury of having time to spend on relationships. Sometimes it feels like it doesn’t count, or maybe shouldn’t count. Does that make sense? I mean, I get to go out to breakfast with people who I care about and now call friends. I get to ride bikes and sit around campfires. I get to do things like hangout at picnics and ballgames and organize fun, connecting events. What do we do? We just talk about life. We talk about relationships, conflicts and businesses. We talk about parenting and finances and decisions. We talk about faith and following Jesus. It happens in person, online, by phone and through text messaging sessions. Being a sort of life-coach comes with this pastor gig and I love it. But, a lot of times it leaves me feeling totally inadequate when all I can do is shrug and say, “I have no idea, I’m struggling with that too.”

Then there’s the awkward stuff that leaves me fumbling with no idea what to say or do. Weird stuff sometimes happens after “Pastor, can I talk to you?” One woman told me God sent her to speak that Sunday morning at our church. One guy vented about idol worship in America and told me to get rid of the flags. Another guy told me all about what he called “the modern Babylon” and how he is sure that Jesus is returning this year. Um … okay, what do I do with all that?

Uncomfortable stuff often comes after, “Pastor, can I talk to you.” Nothing prepared me to stand with an elderly woman and hear her say, “I found out this week that I am dying.” None of my seminary classes gave me the words to say. I feel so unprepared so many times. My quick prayer of desperation is, “God, help me out here!”

Nobody trained me or taught me what to say or how to help with situations I get invited into simply because I wear the title “pastor.” I feel so inadequate when someone calls to ask me to come pray for someone I’ve never met because “they need a priest.” I’m not a priest. My prayers are not more weighty or powerful. I’m glad to pray with people but not as some type of prayer specialist to swoop in and save the day. I’m still trying to figure all that out.

Imagine yourself getting a call to conduct a funeral for a family you’ve never met. Or how about a random call from someone you don’t know asking, “will you marry us?” I get it. It’s part of the pastor role. I’m just so new at it all that I feel like I have no idea what I’m doing. I’m totally comfortable with people I know but I feel like an invited intruder with people I’ve never met … like I shouldn’t be there. Does that make sense at all?

My older pastor friends tell me it’s a privilege that comes with the position. Honestly, for me, it still feels weird.

And then, I spend time on a wide variety of leadership stuff. My position means I have input in just about everything that happens around our church. On any given day I might have a conversation about facility repair or how to find the best price on coffee for the hospitality area. I might be defragging computers one day and editing video the next. One day I am meeting with a network of other pastors and the next I’m updating the website. I love the variety.

Sometimes I bring my laptop and sit in my office on Main Street and other times I lug it to Panera just to be around other people. Oftentimes I sit in my recliner outlining my message and sipping coffee in the early morning while the rest of the world is waking.  I love that what I do is not locked to one spot.

Stress creeps in when I take too little down time and my blood pressure creeps up when my schedule gets too full but my work rarely feels much like work so it’s tough to hold back.

I feel kind of guilty sometimes because so many people hate their jobs and can’t wait to get away. Here it is, day one of my vacation, and I am working hard to make myself disconnect. I know it’s healthy for me to rest, I know everything is fine without me but still, it’s a challenge.

One of my mentors summed it up for me like this. “We have the luxury of having our bills paid so that we can spend our time helping people find Hope in Jesus. It is a gift we can never take for granted.”

I see what he means. I also now understand what Paul meant when he wrote “I long for all of you with the affection of Jesus Christ” in Philipians 1:8.

If “longevity” and “success” as a pastor requires keeping people at arm’s length and not getting too close, I’m going to be a short-lived, major failure.

I guess that’s okay by me.

 

 

 

Posted in Liver disease | 2 Comments

“This is what it’s all about, baby!”

Green Megs & HamI just did something impossibly crazy. Yesterday, shivering and soaked to the skin, I cried ugly tears while rolling across a finish line after pedaling 180 miles in the Trek Across Maine. People under umbrellas shook cow bells, blew horns and cheered. And I cried.

I actually started fighting tears 5 miles before the finish. It’s hard for me to hold back emotion.

It was an absolutely brutal day with temperatures only in the sixties and steady rain falling as a gift from Tropical Storm Bob’s last hurrah. Nearly two inches of rain pounded us while we pedaled.

The weather reports the night before told us it was coming. Our team, my friends, sat and talked about safety and alternatives to riding Sunday. I was quiet. The talk centered on the possibility of packing up and going home, skipping the final 56 miles and maybe making the miles up on a Monday ride.

Back in our dorm room, I laid out my rain gear for the next day and transferred my number to my jersey and told Robin, “If everyone goes home, I am still going to ride. I have to finish this. I’m riding.”

She gave me her “we’ll see” look and said we could decide in the morning when we saw the weather. I nodded but was determined that I was riding no matter what.

Part of my team was laughing and talking in a common room around the corner so I went in before turning in for the night to thank them for being part of this achievement with me and to tell them, no matter what, I would finish the next day.

My good friend Karen looked at me with the look of determination I’ve come to know well and said, “Oh, we are DEFINITELY riding tomorrow.” She took my attitude up a few notches with that. I did not want to ride alone. I knew I needed help.

We woke to what we expected. The rain was steady and the temperature was barely 50. My prayer was simple while I got dressed, “God, give me the strength. I know this is crazy.”

Wet TrekPeople told me I looked like I was dressed for surgery. I had clear, wrap-around safety glasses on to protect my contacts, a bright, blue shower cap pulled over my helmet, a translucent whitish rain coat that looked somewhat like a lab coat and bright yellow baggy rain pants with booties pulled over my cycling shoes. When I looked in the mirror I saw the people who stood around my bed at Lahey Hospital three years ago looking like this just before my transplant. I did look like I was prepared for conducting a surgery. I felt the irony.

It wasn’t long into our 56 mile final day that I became very aware that the money spent on the coat and pants was a total waste. I was soaked and shivering. The shoe covers that were supposed to keep my feet warm and dry instead acted like two little beach pails collecting all the rain they could. They became heavier and heavier with each mile until I ditched them at mile 30.

Still, I made it to the first rest stop mentally strong. We were accomplishing this feat together and most of the team had decided to brave the weather. We joked about the rain, filled our bottles and headed back out with 15 miles done.

By the next rest stop, things had changed for me. My chain had come off a few times, I couldn’t feel my toes and my phone mapping program stopped tracking my progress. Its little blue dot showed me that I was somewhere in the ocean off the coast of Africa! Really, that’s what I felt like. I did my best to put on a smile for my waiting teammates but I was hurting. My check-in text to Robin waiting at the finish line was brief, “30 mile stop. Dying.”

We had 26 miles left to go. 26 miles. Up, up, up, up. I was so tired of hearing, “Coming on your left” as cyclist after cyclist climbed past me.

“Maybe this was a dumb idea. Maybe 160 miles is enough,” my self-talk started shifting. “The next time I see a support vehicle, I’m taking it. At least I tried.”

But then people who passed me started talking to me on their way by…

“Keep going man, you got this!”

“Three years with a transplant? You rock, Scott. Keep it up. Not much further.”

One after another … PUSH … PUSH … PUSH.

I thought, “Man, I must look like I am about to die” and then I heard that voice. No, I didn’t hear the voice of God or anything. I heard the voice of Zabenko somewhere back behind me while I was crawling to the crest of another hill from Hell.

“Woohoo Scott! You got this, buddy! Keep going!” Karen was back there telling people about me, telling them my story and asking them to encourage me on their way by.

She came up behind me and stayed with me. And then Kim came for awhile and said, “follow my cadence … just keep your eye on me.” And then when I was about to kill Karen and tell her to shutup, Russ showed up on the scene making me laugh with, “Let’s go, Batman! We’re almost there!” (My friends know that I am Batman.)

So many people are alone in life. I thank my God every day that I have so many good people in mine.

Though my phone still had me off the coast of Africa, we came to the signs for the staging area where faster riders could wait for slower team members so they could cross the finish line as a group. Yeah, I was crying rolling in but I hid it pretty well.

We got organized and headed for the finish, cold, drenched and tired.

My teammates made me ride in at the head of our pack. I called back for Megan to ride next to me. She was my inspiration for this attempt. She was our team captain.

10306563_10207166718745947_711863714236735900_nAs we rolled under the finish line banner, I looked at her and tried my best at a thank you smile but it was more of an ugly, lip-quivering, crying face. We did it. We really did it.

Throughout the weekend I teased Karen because every time we came to a gorgeous view or met wonderful people or tasted fresh watermelon from strangers cheering us on at the side of the road, she would enthusiastically say, “This is what it’s all about!”

For me, it is all the people who have pushed me along, encouraged me to keep going and have been there for me when I’ve had nothing left. It’s why I hug tight. It’s why I’m not uptight about schedules anymore. It’s why I talk too much and laugh loud and why I sit on the driveway making chalk drawings with children.

Relationships. That’s what it’s all about.

Now, does anybody want to buy my bike???

Jesus replied, “‘Love the Lord your God with all your heart, soul, and mind.’ This is the first and greatest commandment. The second most important is similar: ‘Love your neighbor as much as you love yourself.’ Mt. 22:37-39

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There’s something about the rain.

Our peaceful corner of the world.

Our peaceful corner of the world.

It’s raining and it feels good.

My eyes opened to see 4:32 on my bedside table this morning. My ears heard the comforting rhythm of rain dripping off our roof outside our open bedroom window. I rolled over, pulled the blanket over my shoulder, tucked it in under my chin and just felt good. Really good.

It was just after 5 when my stomach decided it was time to start the day. My comfy, fleece pajama pants and t-shirt were waiting for me in their normal spot near the door. I made every effort to be as quiet as possible while I put them on, gathered my phone off the nightstand and stepped over that one, squeaky floor board into the hall so as not to wake Robin.

My miniature schnauzer barely opened one eye to give me her lazy “good morning” as I headed past her curled up in her spot in my recliner and headed for the coffee maker. My morning routine commenced: opened the kitchen blinds, checked the Keurig water level, popped in a strong, French Roast K-cup and watched the rain make circles in the puddles in front of our house. I felt thankful.

And now I sit in the silence of this morning, listening to raindrops echoing lightly on the stovepipe above our roof. It feels good. Really good.

We need this soaking rain. I need this rain. I don’t know what I mean by that but, somehow, it just feels like it is refreshing me even though I am sitting listening to it and watching it water our little corner.

It’s Monday. There are few tasks on my list and nothing that is flashing or beeping for my attention. My muscles, sore from training for our upcoming 180 mile cycling adventure, are relaxed and sure that we will not be riding today, despite the little voice in my head trying to be heard with, “rain riding would be good for us.” Shhh.

It’s raining. Soaking in. Renewing. Refreshing. Washing.

It feels good.

“Let us try to know the Lord. He will come to us as surely as the day dawns, as surely as the spring rains fall upon the earth.” Hosea 6:3

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What??? My doctor visit was not perfect???

doctor-suprised-high-blood-pressure    I’ve had three years of follow-up visits since my transplant. That means three years of blood lab visits and three years of the 108 mile drive from my door to Lahey Hospital in Burlington, Massachusetts.

And, except for one rejection scare that turned out to be just a virus, I’ve heard words like “remarkable” and “perfect.” I’ve gotten used to the docs and nurses telling me that my blood panels look better than their own. I smile, nod and say thank you like I have anything to do with the result.

Yesterday, I made the trek to Lahey again. I took my dog, Pompom, with me to keep me company. I talk to her and she sits upright with her eyes fixed on me. I swear she understands. I think she even nods sometimes. I can’t get her to sing along to U2 with me though. No interest.

The blood lab was mobbed. The Lahey blood lab is an efficient machine that reminds me of a deli. You get your deli number when you register and then you watch the board on the wall and wait for your number to be called. I hear a phlebotomist step out of one of the 10-12 rooms on the perimeter of the waiting room and call, “36?” I look down to see that I am holding number 66.

“36!” she calls out more loudly. I see a man moving toward her like Tim Conway playing the old man on the Carol Burnett show and think, “uh oh … I might be here awhile.”

When it’s my turn I step through the curtain and take my spot in the blue, vinyl chair with the long arms and give my Lahey number from memory. The phlebotomist looks at me like I’m crazy when the record comes across her screen. Apparently I look nothing like an 82 year old Asian man! That, in itself, is pretty cool because it means I have forgotten my Lahey number. That means I’ve been doing so well that I haven’t had to use that number in a long time. I prefer not being a number. Most people who go through chronic illness feel like they are losing their identity and becoming just a number or the disease they are fighting. That’s how I felt too.

I make it through and head to the cafeteria before my appointment. The routine always includes an hour between having your blood drawn and meeting with your doctor to give time for the results to come in. Lahey is that fast!

We make small talk at my appointment. Dr. Akoad shakes his head and comments on how remarkable the change is from what I was to what I am now. That has to be pretty cool for surgeons who watch you go from nearly dead to living and thriving because of their efforts. He goes through my lab numbers and everything looks great, perfect, spectacular, until he hits the blood pressure reading and pauses to pull his glasses to the end of his nose to lean closer to the screen.

“Woah, what’s going on with this here? You still exercising and riding your bike all over the place?” he asks. I nod and then we talk about life.

To him, my high blood pressure makes no sense physically. My liver numbers are fine so it’s not due to anything going on there. But, I’m not overly surprised at the result. It has been a pretty stressful Spring. I don’t think it’s been worse than anyone else. Life is stress. We all have stress. Stuff happens.

But, I guess it’s a bigger deal with me and something we need to figure out fast,. The strain of high blood pressure on all my little man-made connections to my new liver is not a good thing. Yeah, I guess I knew that.

So, I have to take my BP reading three times a day and record it in a journal for a week. If it goes higher I have to call. The only prescription he gave for right now is to “deal with the stress” in my life, identify the sources and make changes. I need to figure out how to switch off my racing mind. Then, if I fail at that, more drugs are ahead to try to manage it. Neither of us want to add more drugs and more side effects to my routine.

On the good side of things, my anti-rejection prescription was reduced again and I am lighter than I was last November! Yay me! I have to go back to getting monthly blood labs for awhile to make sure the change does not impact my liver numbers negatively but that’s fine with me. I want to be on as little Prograf as possible.

It’s a gorgeous day, the sun is out and the birds are singing. I have a stressful morning ahead but am planning to negate that with 20-30 miles of pedaling this afternoon.

If you are a praying person, pray that I’ll figure this out soon and have the discipline to do what I know I need to do to stay healthy.

I’ll pray that for you too.

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Three bonus years, today

Every day bonus day Three years ago, today, my family was getting ready to head to Lahey Hospital in Burlington from the nearby hotel where we checked in the night before. It was the day we had been praying for for a 368 days since I first learned my survival depended on a liver transplant.

It has been three years of bonus days, some harder than others, but bonus days nonetheless. Even bad days are kinda good when you know that you wouldn’t be alive under normal circumstances without a few, well-timed miracles.

In three years of bonus days I have performed the wedding ceremonies of my two boys. I’ve proudly witnessed my children accumulating degrees and certificates while they wore funny hats, coats and robes. I’ve made new friends, fallen in love with a new faith community and become part of a neighborhood that reminds me of times past where people care enough to watch out for each other and get involved.

Three years of bonus days.

I’ve pedaled a bicycle more than 2500 miles, walked and swam. I’ve been tossed around on a boogie board by waves on a Hawaiian beach. I’ve stood on mountain tops admiring the majesty of creation and have sat sipping coffee on beautiful summer days here on my front lawn,

Three years of bonus days.

I’ve watched sunsets with Robin and snuggled up by the wood stove while blizzards have roared outside our front door. I’ve tormented her with selfies while she has tried to shop and have made her laugh by being silly.

Three years of bonus days.

I’ve let my little fluff ball in and out thousands of times and spent hours waiting for her to find the perfect spot to pee. I’ve thrown the ball thousands of times and handed out treats each time she has brought it back. My little therapy dog does her job every day.

Three years of bonus days.

I’ve worried some, gotten anxious about too many things, been frustrated at times and scared now and then just like everyone else. Just … like … everyone … else. It feels so good to write those words.

Three years of bonus days.

I’ve cried happy tears off to the side every time my family has spent time together. Emotion still takes me by surprise. From standing on a balcony in Maui while watching my sisters laugh and play on the walkways below, to Thursday visits with my mom and dad, to catching my kids kissing their spouses … life tears are still just below the surface.

Josh Scott three yearsThree years of bonus days.

Work deadlines, messages to put together for Sunday mornings, task lists with too many tasks, big goals and dreams. I am working too much and always trying to find balance. Just … like … everyone … else.

Three years of bonus days.

Every day is a bonus day.

I am a blessed man. My Josh is a hero. But, what you need to know is that he is only one of three of my children who would do anything necessary to save my life. I had a list of 9 people on my potential donor list. Nine people. Wow. No words.

Every day is a bonus day.

Ps. 118:24 This is the day the LORD has made; let us rejoice and be glad in it.

Posted in Liver disease | Tagged | 1 Comment

My Christmas gift made me cry 5 months later.

According to my family, I am a tough buy. I don’t understand it at all but I have heard it for almost thirty years. I think I’m an easy person to get gifts for.

I mean, I like a lot of things. I even get excited walking through the aisles of Staples. I like pens. I like coffees. 50% of my wardrobe is t-shirts with team logos on them. It seems to me that I am an easy buy.

But, I think what my kids have been saying is that it’s tough to find me cool, out of the ordinary, gifts that will wow me. We Linscotts like to wow people so much that they cry when they get their gifts. We love happy tears and big surprises.

With those goals, yeah, I’m tough but who isn’t? I mean, I like everything, but usually I leave my Christmas gifts til last so I can take pictures of everyone else opening their gifts.

I absolutely love giving gifts! I’ve spent my whole married life trying to get a giant reaction out of my wife. The problem is that she is not a “giant reaction” type of person. My sweetie is calm and reserved. I can’t even get her to yell “woohoo!” at a baseball game. I’ve tried. My daughter is almost a carbon copy of her when it comes to public reactions. We men? No way! We are the jump-up-yelling-woohoo-and-tackle-ya types. We yell at ballgames and celebrate loud. Our kids’ marriages brought two more woohoo types and one additional reserved celebrator into our tribe.

I was soooo excited this past Christmas because I caught my Jake’s wife Laura wiping away happy tears when she opened my surprise gift. She hadn’t chosen the photos for their wedding album still so I took matters into my own hands asking my girls to go through the hundreds of photos to pick the top 100. Then, I designed their album. Boom! Tears! Success! I love that.

But, I didn’t cry at my gift … until 5 months later. I didn’t cry until this past Sunday morning.

On Christmas morning my family gave me the gift I asked for. I told them I didn’t want Sox hats, cool gadgets or photography bobbles this year. All I wanted was focused time with us all together at some point during the year. On Christmas morning they revealed the plan of a Spring weekend in a large Vermont mountain cabin. Together.

“Together.” I love that word maybe most of all words. My transplant bumped it way up my word list. Other words used to show themselves competing for top spot and pushing “together” aside until “later” way too often. “Together” fought with deadlines, work responsibilities, appointments and schedules. As the kids got older they had their stuff with their friends and we had our stuff and “together” got bumped a lot.

My transplant brought it back to the forefront for all of us. Even with college classes, weddings, buying houses and living life, the glue of “family” was reapplied or somehow strengthened. It was always very, very strong but now it’s stronger than Gorilla Glue.

So, early last Sunday morning while the sun was rising, sitting in a Vermont mountain cabin with my family sleeping in rooms on the second floor, I cried.

The tears came while I was going through the results of our family photo shoot from Saturday afternoon. Rather than find an area pro, I opted to just use my tripod and a remote trigger and a bunch of props. I brought all my photo gear and was ready to roll.

My daughter-in-law, Kristen, spent some of her day making the chalk drawing signs I wanted. One side of the sandwich board sign simply identified us and on the other I asked for my life motto since transplant, “Every day is a bonus day.”

Scrolling through the photos I was struck by a couple things.

First, my kids are so in love. Growing up complaining about Robin and I kissing in the kitchen, holding hands on walks or wrestling and playing have left their mark. My kids used to complain about being “scarred” by us being awkward and a little embarrassing in our expressions of love for each other. Flipping through photos I saw those scars. Each of my kids plays with their spouse, laughs a lot and vocalizes their love with words. They have learned well. I love their scars.

Second, these pictures showed me the glue of family. I see a lot of families struggling, arguing and dreading having to get together at holidays. That is not us. I pray it never is. We played together, walked together, laughed together, drove together and ate together. Together.

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When families are made up of individuals lacking the glue of “together,” chaos ensues.

 

The chaos of transplant glued our family together stronger than ever.

The chaos of transplant glued our family together stronger than ever.

Before we headed home on Sunday morning I gathered my gang together near our packed cars to thank them for such an amazing Christmas gift.

And, of course, I cried.

“You meant evil against me, but God meant it for good.” Genesis 50:20

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