PRAY! 2 closings today!

This is more of a call to action than a blog post. Will blog this weekend.

URGENT CALL TO PRAYER: please pray both our closings today at 1 and at 2:30 both are smooth transactions with ZERO SNAGS.

Tomorrow we lose the home we built

So many good memories

I’m sitting in my living room with 4 or 5 boxes. All but two rooms in our house are empty. I’m feeling melancholy and a bit sad. I feel robbed by this stupid liver disease.

We built this house. We sat with my contractor friend Don Morse of Morse and Sons Builders and began to dream. We drew plans, changed plans and decided on just the home we wanted. We designed a home for welcoming others and sharing our Faith and lives. We watched the lot go from a wooded corner to a sand clearing. We watched the foundation be poured and then walked around in the space imagining walls and trying to picture gatherings. We watched walls go up. We picked flooring and cabinets and lighting fixtures.We watched trusses go up, roofing go on and doors stalled. While electricians and painters did their work we came and walked around the house giddy. And then, we moved in.

Wow. Jake was 9, Shara 11 and Josh was 13. For the next 11 years we watched them grow and become part of the community. We hosted soccer and field hockey team dinners. We had swimmers come together. Our youth group and leaders came together so many times. There were home bible studies, dinner gatherings and celebrations. Our home became the place for our large family gatherings at holidays and special times. We hosted my mom and dad’s 50th wedding anniversary party. There are so many memories here. This has been home.

Tomorrow every room will be empty as one more load gets packed. Some of our dearest older friends will come and give it a final cleaning for the new owners after we have left. We will lock the door and walk away never to return.

Don’t get me wrong, I am thankful God provided a buyer before we stopped being able to pay our mortgage and taxes. I am thankful for our new little house that will be within our new budget. But, this would not be happening if liver disease did not take away what we built. That makes me mad … and sad …

Liver disease has taken away my ability to work. It took my health and my freedom. It ate up our savings and retirement. It took our house. It took me out of being able to speak and teach and it put off our vision for building a faith community that gathers to share life, worship, serve and grow. I hate liver disease.

But, I know my God and I know His promise to build us in times of trouble. I know, because of His promises, that one day I will look back on all this and praise Him for the good that came through it.

But today? It’s really hard.

Romans 8:28

Presented to surgeons this week

 

Healthy liver

Wow. My mind is spinning. I’m as foggy headed as a Baltimore Ravens kicker. So much is going on.

First, my case is being presented to the Lahey Clinic surgical team for a transplant verdict this week. On January 31 I will hear their decision. Oh man, I pray that I’m having this horrific, major surgery this year. Yeah I pray that I get giant scars, have my diseased liver removed and get a chunk of a new one. The picture of my liver turns my stomach. It’s so weird to be hopeful for the most dramatic and severe operation of my life but I really do want to live. Without the surgery, I die. Yikes.

My liver. Ewww

 

 

Second, I’ve gained about 16 pounds of fluid in the last two weeks. That’s not good. My belly is bigger than a Wilfork in the super bowl. My lung is back to being about 60% full and I have a respiratory bug. Lahey Clinic doubled my diuretic dosages to try to drain it. They would rather not tap my belly to drain it off yet. I ain’t no sap tree! I’d rather not be tapped.

#75 Wilfork for Food

Third, our house closes Friday at 1 and then we close on our new place at 2:30. Our moving POD is filling up! I have had daily paperwork to complete for title companies, have ordered service changes and changed our mailing address to 5 Village Lane, Westbrook, ME 04092. But the truly amazing blessing is Alissa’s parents are letting us use their house while our place is being painted and getting flooring replaced because of my allergies and illness. Alissa and Jeff Messer have really blessed us like crazy!

We also have our cleaning angels coming Thursday afternoon to make our current house spotless for our buyers. Ellen, Mary and Ruth are so kind to help us this way. We have run out of time to do everything because we move out Thursday evening. They asked me if they could help us in this way and I hadn’t even mentioned the need to anyway. I continue to be amazed at how our God provides for our needs even before I know what our needs are. Faith in Jesus is real, even if you believe it’s bunk. We offer everything and expect nothing more than the Grace he has given and still, he blesses us.

I’ve had quite a bit of pain lately and don’t move much. I try to make myself walk some. My thighs have so much edema (swelling) that docs want me to keep my legs above my heart. Um, how does one do that and get anything done? Am I spiderman? That would be pretty cool!

When your “innie” becomes an “outie”

When Robin was pregnant with each of our three kids her tiny frame meant she had a giant belly. She was one of those women who was all belly. We were pretty excited and we joked a lot. I remember struggling to climb out of our water bed. I joked about wanting a foam harpoon. One of my favorite pictures was of her standing knee-deep in the Saco river with a string of middle school students hanging off her in the current. I laughed hearing one of them yell, “Quick! Swim to the raft!” He, I think it was Ralph, declared my round little Robin, “the raft.”

In the final weeks her turkey timer would pop. Her innie belly button became an outie. My sweetie was an awesome preggo. How many women do you know who would have taken a canoe trip with a group of teenagers on a canoe trip two weeks before delivery? We joked about naming our firstborn Hiram Fryeburg Linscott if he had been been born on the Saco River somewhere between Hiram and Fryeburg. Just think, we’d have no Joshua Abram today.

I’m pretty sure I’m not pregnant but liver disease has made my innie an outie as ascites fluid keeps leaking into my gut. My timer has popped. My belly is giant. I’ve got no baby to deliver though. No one is going to bring me little Red Sox onesies or Vermont Teddy Bears. My timer has popped because I have a diseased, scarred, pitted liver. The pictures are downright nasty.

My first two days at Lahey Transplant clinic went very well … and then I came home and caught a bug. My next appointment had to be rescheduled because of the nausea, pain and misery from a stupid little cold that anyone else would have easily fought off. Did you know your liver plays a role in your immune system kinda like putting up the shields on the Starship Enterprise? When the shields go down, the Klingon attack hits full force. Every shot is felt.

Now, instead of having my final status and answer from Lahey on Jan. 20, I have to wait until Jan. 31. This Friday I will head to Burlington again for an EKG with a stress test. That should be fun. How am I going to handle a treadmill when a walk from the parking lot already pushes me to the limit?

This morning a coughing spell woke me at 3:30 AM. I came downstairs and made a cup of tea with honey and lemon, brushed out the pellet stove, packed a box of something I sold on Ebay and then blogged.

This liver disease thing sucks but it’s my life right now. Why? I don’t know. Why do children die? Why does the healthy dad drop dead from an annuerism leaving his family behind? Is it God’s fault? I don’t believe it is. My faith gives me strength to face the aches and pains of life. It gives me purpose and hope. I don’t believe my Jesus makes quarterbacks win, empower beauty queens or celebrates Golden Globe or Academy Awards. He is pumped about people who invite Him to help them navigate life’s challenges. He is pumped about us truly loving others.

Gas up the car, Hiram! Ragtime concert Jan 29

I have learned so much this year. I have seen the heart of the Creator in so many kind and generous people. Now I have people organizing community events to help with my transplant expenses. The piano player from my daughter’s wedding is hosting an afternoon of ragtime music for me (info).

A 10 year old girl is raising a pig for me and her mom is coordinating a fill-your-freezeer raffle, for me.(more info) People have taken donations for my PUSH bracelets. Captain Hal Cushing is hosting a Casco Bay Sunset Cruise in June, for me (more info coming soon). People have asked me about

Fill-your-freezer raffle tickets $5 each, $10 for 3, $35 book of ten

sponsoring multi-family yardsales, car washes and bake sales, for me. I am simply blown away.

There are so many good, generous and kind people in this world of ours. Each of them possesses the stamp of the divine and reflect the heart of the Creator, even if they have no idea what to call it or how to express it. From buying groceries to providing heat to giving gifts for our needs, each makes me see the beautiful tapestry of humanity. I’ve learned to see the Creator in every person who crosses my path. I’ve learned to love more. I value them all from the people who send positive thoughts to the faith healers who put their hands on me and pray. I value the positive thinkers and the realists the same. The claimers and the God’s will people each are doing their best to love me.

My world is in turmoil. We close on the sale of our big house January 27 and then close on our new little house January 28. My life is in boxes with many more to pack in the midst of going back and forth to Lahey. I am trying to schedule flooring installation, appliances and painting with the hopes of getting into our new place quickly after closing. I am weird because I am looking for a place we can stay without saddling a host family with my issues. But again, we have had numerous people say, “come stay with us” which shows their love for us. I’m just one of those, “stay away from me when I’m sick” types of people.

My timer has popped. I’m ready for the stress test at Lahey and anxious for the answer and timing of my transplant. My faith pushes me forward. Your kindness overwhelms me.

The ancient book I like to read boils down to two things Jesus said:

1. Love God
2. Love Others

I think I’m learning what that means.

But when the Pharisees heard that he had silenced the Sadducees with his reply, they thought up a fresh question of their own to ask him. One of them, an expert in religious law, tried to trap him with this question: “Teacher, which is the most important commandment in the law of Moses?” Jesus replied, “‘You must love the Lord your God with all your heart, all your soul, and all your mind.’ This is the first and greatest commandment. A second is equally important: ‘Love your neighbor as yourself.’ All the other commandments and all the demands of the prophets are based on these two commandments.” Matthew 22:34-40 NLT

My first two days at Lahey Clinic for Transplantation

Success stories are all over in the Transplant area

We headed to Massachusetts last Wednesday night to avoid hitting the road at 4:30 AM. I was pretty nervous so I worked on keeping my mind occupied with reading and doing some paperwork. I slept maybe 3 hours.

Some people tell me I shouldn’t be nervous, like I have a little magic wand I can wave and make me excited to face major surgery. Um, is that even realistic? But, I’m also excited and hopeful. Maybe I have bipolar emotions? If I don’t get the transplant, I’ll die. It’s a simple fact (except for divine intervention.) If I have the surgery I may have a long and relatively normal life ahead of me. I like the sound of that even though the thought of removing a piece of me and putting in a new one is scarey.

Anyway, Day One at Lahey had me checking in, peeing in a cup and then sitting with a few other nervous families waiting for the day to start. For the first 2.5 we learned about liver transplants, livers, the clinic and the staff. Though the room was FREEZING (I’m always cold), the staff was friendly, welcoming and very patient with all our questions. I didn’t feel like a number. Instead, I felt cared for and at ease.

Robin and I went to the cafeteria for lunch. Everything looked great but my low-sodium diet trimmed my options to mostly tasteless stuff.

After lunch I had interviews with a nutritionist, the director of transplant nurses, a psychologist, the director of social work, the director of immunology. One after another they came in and told us what to expect. My butt went to sleep.

We ended day one with bloodwork and then a pneumonia vaccine. We got some dinner and groceries and heading back to the hotel. I was absolutely mentally exhausted. Nervous for the tests of the next day, I did manage 5 hours of sleep.

I started day two having 21 vials of blood drained from me. Then I went right to an MRI to lie in that tube for 40 minutes. The IV hurt as usual. I hate IV’s!

Then I headed up to have a chest X-ray and then went directly to an EKG. We didn’t have to wait at all in any spot. It was amazing and, from what I understand, not at all a common occurrence. We then met with the financial planning director and finally one of the primary transplant surgeons.Our 4pm day was done by 1pm!

The most encouraging part of the two days was Dr. Lewis telling me my MRI looked great, my portal vein was “pristine” and no one saw any reason I would not be good candidate for a live liver donation! Of course, I still have another test this Thursday and then will travel back to Lahey Jan. 20 when I will get the final answer if I am in or out, but things are looking good!

Nervous? Yes. Hopeful? Absolutely! I’m not sure why I’m walking this path but I do know that my God is the same come what may. I do know that my without my faith, I would not have made it this far.

Don’t Make Me Punch You!

I’ll add mine to everyone else’s, happy new year! What promise lies in the new year? New job? A new car? A promotion? A new relationship? Your dream vacation? Graduation?

But as bad as you want those things would you die without them? I spent most my career working with teenagers and college students. They are masters at hyperbole! “If he breaks up with me I’ll die!”

“If I don’t get into the right school my life is over.” If they have a rough day you can count on their status reading “FML.” (f*** my life) Honestly, when I hear that I want to grab them by the throat, smack them upside the head and scream, “Give me a break!”

You know my story. I know you’re probably just as bored by it as I am in telling it. Liver disease… Blah, blah, blah. Transplant… Blah, blah, blah. I’m going to die… Oh boo-hoo. Even I am sick of my whining. I want this to be over .

For me 2012 represents life. It offers the hope of a transplant. A new liver. A new beginning.

FML ? No way! 2011 has taught me that life is precious. Every day is a gift. I’ve learned to value people more, find peace in my GOD and to stop serving stuff . I want to invest my life in things that matter rather than stuff that’s going to rust, bust, turn to dust and break up in the end.

My prayer for you in the new year is that you discover LIFE like it is meant to be. Don’t let circumstances rob you of that life. And please forgive me in advance if you come around saying “FML” because I’ll punch you in the face . Okay maybe not, but at least I’ll want to.

A thief is only there to steal and kill and destroy. I came you can have real and eternal life, more and better life than you ever dreamed of. – Jesus
John 10:10 -MSG

Another tacky Christmas Letter?

Our family grew by one!

Dear Friends and Family,

I’ve written a family letter every year since Josh was born. Some hate these letters, take them as bragging or see them as tacky. But, you know me. When have I ever cared what people thought? It’s up to you, I won’t be hurt if you delete this with a grunt of, “Bah, humbug!”

If you’re still reading, hang on, this letter is going to be somewhat different. In fact, I haven’t really had the energy to write one until now. Do you want the good news or the bad news first? Okay, I’ll start with the bad news.

The bad news:
I started this year with a brand new horizon. I was excited to be leading a group hoping to build a faith community following Jesus and loving and accepting people with grace apart from institutionalism. The future was so bright. But then, in May, it all came crashing down. I learned that I will die without a liver transplant. My condition has worsened since. I can’t work, I can’t contribute and I am totally dependent on others. I am weak. How life can change in just a year! We had to sell our house or face foreclosure. We’ve had times of friends bringing us food and times of getting food from food pantries. I used to be proud. Now I am just grateful.

The good news:
First, God has met ALL of our needs. People are so loving and generous.

Second, our family has grown! Our little Shara married an awesome guy who fits right in with our crazy bunch. I was so thankful to be alive and able to attend her beautiful wedding celebration. I even had the privilege of officiating and pronouncing she and Jake man and wife. What a great family celebration!!!

Third, Chef Donald Jacob finished year one at the Culinary Institute of America. We saw a tremendous growth in his knowledge and skills. YUM!!!  He also secured an internship working in Maine’s only 5 star restaurant, the White Barn Inn. It was grueling and just as abusive as those cooking shows on TV but he survived it. We are so proud of him.

Fourth, Josh finished year one at Weill-Cornell Medical School in Manhattan. He got honors throughout and was top of his class. He even coached Little League! Amazing.

Fifth, Robin’s job at Boyko is a blessing. Her boss blessed us with health insurance for 2012. It’s a very good policy. She has the flexibility to work at home and take me to my doctors appointments. She continues to amaze me by all she does. Now she’s even tutoring children in reading at The Root Cellar, an inner city ministry in Portland.

The coming year will be a year of struggle and victory and growing in our faith. New house, new liver, new beginnings. On January 4-5 I will begin the process of testing for a live liver donor at Lahey Transplant Clinic. If I am a candidate for a live donor I will be transplanted in 2012. If I have to wait for a donor liver, I will have to become much sicker before I move up high enough on the list. I know of others who have waited for years. In my support group just in the last month, 3 people died waiting. THIS SHOULD NOT BE! Too few Americans are registered organ donors. (PLEASE Click here to register.)

Hug your family close. None of us can predict the future. Last year at Christmas I wasn’t even thinking of livers and how long I would live. This Christmas I am just happy to be here. Make 2012 the year you take care of your health -start losing that weight. Keep working to get off the smokes even if you try 8 times and fail, keep trying. Walk, even if you start with only being able to handle 10 minutes a day, move! Monitor your sugar and discipline yourself to eat healthy to keep your diabetes at bay. Trust me, your family wants you around for decades to come!

We are so thankful for each and every one of you.

Merry Christmas and happy New Year from Scott, Robin, Josh, Shara and hubby Jake and Donald Jacob.

God didn’t go to all the trouble of sending his Son merely to point an accusing finger, telling the world how bad it was. He came to help, to put the world right again. John 3:17

 

Holding pattern and Christmas blessings

Cleared to land?

I remember once, years back, when I was in the air above Chicago’s O’hare airport circling and waiting to land. Back then there was no wifi, no tv’s and laptops were few and far between. I was listening to the headset air traffic control channel. After circling for more than 40 minutes, I heard our pilot radio the tower with our flight number telling them we only had enough fuel to circle one more time. He requested that we be able to land immediately or be rerouted to the closest airport. Within a minute I heard the reply of the tower granting immediate clearance to land. We made a very fast descent. Being in the back of the plane, I looked forward and could see every row and the front of the plane. It was like I was sitting in a theater. I was tired of circling but nervous about the rate of descent. Knowing the seriousness of our situation didn’t help me at all.

Today I am in a holding pattern waiting for a liver transplant and hanging in the air waiting for the Lahey Transplant Center to call me in. I had hoped to have my 2-day assessment done by January 1 but it’s just impossible for them as they care for so many. Maybe they will call me in to start of 2012. I’m not looking forward to getting called in, but I know my body is running out of fuel and cannot hang here forever. I have boney legs, boney shoulders, boney arms and a swollen belly with ascites fluid. I weigh 209 pounds now including the 10-15 pounds of fluid. I tire easily  and am not to lift more than 20 pounds. I contribute nothing. I am circling, taking lots of medications and waiting for the terrifying call that I am cleared to approach the runway. I know that if I continue circling and waiting that I’ll run out of gas and crash but that quick descent is scary. I’ll just hang on tight!

Meanwhile, I sense something changing inside of me. I am truly able to be thankful and look for the positives. My faith is rebounding from question after question to simply trusting my God and being happy. It’s hard to put into words but even on bad days now, I am able to laugh a little and have confidence that tomorrow will be better.

Every night I watch Christmas specials and cry while Robin laughs at me for the waterworks triggered despite bad acting, low budgets and predictable Christmas miracle happy endings where everyone finds love. I’ve always cried at the good ones like It’s a Wonderful Life, Scrooge and White Christmas but these are cheesy Hallmark and Lifetime Network movies! I’m a mess!

My life is full of Christmas miracles this year. It began when 16 family members gathered at our house during the Thanksgiving Holiday. That alone was enough for me but then a guy from Time Warner showed up at my house and installed cable TV! My sister Gail and niece Stephanie spoiled me with an early Christmas gift of a year of cable TV. You know what I did? Uh huh, I cried. It’s so nice to not be laying here in silence with no television signal. It was depressing. Now, I can watch Storage Wars, Myth Busters, Hoarders, Sports Center and News rather than just dwell on my health.

Then, my wife’s boss told her he is going to provide us with health insurance! My deductible will drop from $15,000 to $1,500 ! My reaction? Well … of course, I cried.

Then, I went out to get the mail earlier this week and saw an envelope for Social Security. My heart sank a little because it had been less than five weeks since I applied for my disability insurance. I was certain it was the denial everyone told me to expect because applicants usually hear no decision for three months. I expected to have to appeal, give more documents and then not get it settled for 6 months to a year. My lawyer sister was all ready to file the appeal. I had to read it three times before I believed it. My disability insurance application was approved and my monthly checks would start arriving in just a few days!!! That’s a miracle! Surprise, surprise… I cried. It will be a big help.

We are ending this year with our mortgage paid and able to pay off some of my medical bills that have gone to collection. There are many, many kind and generous people in the world. We’ve experienced God’s love through them. Grocery gift cards, checks, encouragement notes, phone calls … we are so blessed and amazed.

From old high school friends to strangers across the country to our friends in Mexico, God has blessed us so much. I have people who have volunteered to help raise money for my transplant with bracelets, events and spreading the word. My cousin Shari even gave me a pig that she is raising so we can have a pig roast or an auction. My friend Captain Hal Cushing is going to take passengers on a beautiful Casco Bay Sunset Cruise with the proceeds going to www.NTAfund.org on my behalf. My new friend pianist Ron Carroll is putting together a night of jazz with 6 others in his band to help while my dear friends and brothers in The Wrecking will do a local benefit concert in the midst of touring nationally with their unique rock sound.

And then, today, we received an offer on our house and reached a deal. My head is spinning! Now our search for a home can begin.

So many things are happening. I have the sense that the bumps on this flight that have rocked us are smoothing out so we can enter the transplant process without huge weights on our shoulders.

Soon the call will come from Lahey, “Flight Bald Guy 48, you have been cleared to land. Come on in.”

I cannot fathom the depths of God’s love for me and you. I simply can’t.

As you watch the next Christmas special, hold your loved ones close, be thankful and shed some tears with me.

Liver disease may take my life but it will not take my LIFE

New life. Today I felt well enough to hold newborn Stephen Willette. Apart from a concentrated effort to keep my emotions in check, I breathed deep.

There’s something about a newborn baby that gives hope and renewal. I felt his warm little fuzzy head moving across my cheek. I breathed the unmistakable smell that only babies have. I looked into his face and saw life. He is potential. He is innocent. He is  helpless not even able to hold his head up. He relies on his parents for everything. He wiggles with discomfort and his parents meet his needs. He can’t fathom the depth of love he has in them.

Met with the reality of my own mortality this year, I snuggled him close and could have easily wept. New life.

My God is a God of new life. He’s a God of love that I cannot comprehend. In October I shot Stephen’s portrait. It is titled, “In the Hands of the Father.” I did not feel well at all but I managed a half hour family portrait session. I was not well enough to hold Stephen.

But today I was well enough. With his warm little head nestled against my cheek, I breathed deep the very breath of God. I could almost hear God whisper, “I have you, Scott and I love you more than you can understand.”

No matter your illness, no matter your struggle, please know that the love God has for you is real. Rest in The Hands of the Father.

2 Cor. 4:16 So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. MSG

My liver transplant is in the near future

Neither Robin nor I were prepared for the news Dr. Amy Tien gave us at Lahey. She simply said she is recommending me for a live donor liver transplant. She noted all the things I’ve been through since May, ordered blood tests and then had us meet with a transplant social worker to get scheduled for my two days of testing and meeting with the transplant team.

Dr.Tien told me my quality of life will be best with a live donor match and that I would need to get much sicker for a cadaver gift to be matched.

I’m scared of a 12 hour surgery. I will wake up with a machine breathing for me. I’ll have at least 4 tubes draining fluids from my liver and fun stuff like a catheter.  I’ll be in the hospital at least two weeks. After that, I will have weekly blood tests. The work of therapy will begin.

As we got back into the car, tears came and I told Robin, “I don’t want my kids to have to do this.”

You can’t imagine what it is like to hear your son say, “Dad, I’ve had the sense that I would be the one from when I first heard in May.”

By Thursday of this week, I had such an ammonia buildup that I made no sense the night before. I didn’t know if it was day or night, had no memory and couldn’t give my own telephone number. It resulted in more blood tests and a medication called Lactulose.

My sister Gloria came to babysit me Friday so Robin could get her work done. She gave me my medications and made awesome low-sodium soup. She helped me use a Kohl’s gift card and get an additional 20% plus free shipping by ordering online.

It’s strange not being able to manage the simplest tasks. You wonder if you’ve lost your mind.

Where’s my faith?
There are so many unanswered questions. If our house doesn’t sell at this price, will we lose everything and not be able to downsize. The pressure builds each day. God, why are you letting this happen?

I’m blessed and amazed by gifts, kindnesses and the way God has given us groceries. I’m blessed that disconnect notices for power and water were paid. I am amazed.

Still, spiritually, I am dry. I need the Holy Spirit to spark me. I feel like my prayers just bounce off the ceiling.

I’m tired of telling my story and do not want to be defined by my disease. Yes, everywhere I go, I have to talk about livers. I am not Scott the liver patient. I am Scott, a child of God, forgiven and free. In grace there is no guilt.

I am thankful that I am cleared with the National Transplant Assistance fund and all gifts to my transplant fund are fully tax deductible. If God moves you toward end of the year giving, please considering helping us by clicking the NTA link above and giving online.

There are numerous expenses uncovered by insurance. My approval for Social Security Disability could take months, a year or more. The NTA helps before and after transplant. (Anti-rejection drugs can be as much as $6,000 a month.)

Next week I have family coming in. I am so thankful for the 16 of us who will gather. I pray that I will stay healthy. I am thankful for every day I get with them.

If you could pray about our house selling, we have 3 more showings on Sunday.

 

 

 

Thursday I head back to Lahey

What a couple weeks it has been! This liver disease ride is a roller coaster. A couple weeks ago I was still carrying around 20 extra pounds of fluid. Today, after medication boosts, I am back down to 208. Back then, my lungs were drowning and I had no energy. Now, I’m not coughing all the time but I am as nauseous as a sailor during his first storm. As weird as it sounds, I think I prefer the coughing.

Last Wednesday my local GI doc called to tell me my liver numbers are getting worse and he wants me to go back to Lahey to meet with my transplant doctor. I called thinking they’d squeeze me in during January. You know how scheduling doctor visits goes. No, 7 days later they want me in there. I’m glad they are seeing me so soon. Nervous but glad.

A local TV channel called me to do a story. I’m not a fan of hype so I almost said I’d pass. But, I figured, “What the heck do I have to lose?” 90 minutes of being interviewed and talking about the need for organ donors, how blessed we have been by our Faith and the support of others, the transplant process and needing to sell our house, got boiled down to about a minute. Robin and I gasped when we heard the teaser at the top of the broadcast which said, “a local man must sell his house or face certain death.” YIKES!

Our conversation of lost equity and the need to sell at the current price in order to provide a down-payment to purchase a much smaller home we can afford on Robin’s salary was reduced to us being left with nothing by selling at this price.

Wow. I watched and felt pretty bad. I know our situation is bad but it is not hopeless.

Then, lastly during these eventful last couple of weeks, I gave in and applied for Social Security Disability Insurance. That was a tough blow to my independence but I had to admit that I have been unable to work a regular job in 7 months and there’s no indication that I will work again soon. Sure, I’ve been paying social security for 30 years but I still have trouble wrapping my mind around getting a check for laying on the couch.

Emotionally? I’m fighting depression. People tell me that’s normal. Really? That doesn’t do much for me.

Mentally? I have a tough time focusing.

Spiritually? Dry. I’ve got books on how to live and how to die. I’ve got pile of bible verses. It sounds terrible, but I am having a tough time praying and reading verse after verse. But I know God is present and I know that He has time and patience with me. I am amazed how He provides for a whiner like me.

I like roller coasters. I don’t like roller coasters that jerk me around continuously for 7 months.

We all know people who have been made much meaner and more irritable and more intolerable to live with by suffering: it is not right to say that all suffering perfects. It only perfects one type of person …… the one who accepts the call of God in Christ Jesus. –Oswald Chambers

 

 

Will I ever get the chance again? I hope so.

There’s just one thing that I have wanted to do since I was 17.  I mean one purpose or one thing I’ve wanted to accomplish and spend my life on. There are a lot of smaller things and things that are shaped by my One Thing.  I do have a checklist of sorts just like everyone else does:

___ be a husband building a great marriage

___ be an active dad encouraging my kids’ unique interests

___ be a son and brother who values family

___ be a friend

My checklist has never had things like jobs, houses, cars and cruises on it. Those things have never really mattered to me. They aren’t inherently bad things. They’ve just never motivated me.

I remember serving under a senior pastor once who told me I needed to be at a church picnic to run sack races and games. When I explained that I would have to miss it because my son had a travel team soccer game, he told me missing it was not an option and that he would have to “call the deacons” if I did. He then reminded me, “you need this job.” Oh well, it just wasn’t on my checklist. I knew I’d have other jobs but I’d never have another childhood with my son. A month later, I was in a much better job. My son scored a couple goals. Check.

But my One Thing? I’ve always wanted to help people find Hope and Rescue. Since I was 17 and hungry, I’ve wanted to show others where I found food. I’ve wanted to help people understand the difference between religion and relationship. My goal has been to help others find the purpose I found.

I’ve spent most of my life helping people discover fulfillment in giving and serving. I’ve seen 18 year old young men weep after serving people by rebuilding shattered worlds ravished by Hurricane Katrina. I’ve watched hearts melt when deaf, Mexican children have crawled up into laps. I’ve seen understanding birthed as I labored with a group working on an inner-city building digging bullets out of door frames. I’ve watched young women sit and talk with a mom at a soup kitchen and then break the rules by slipping her their last $20. In all these things, I’ve seen Jesus.

I’m not talking about media Jesus or American Republican Jesus. I’m talking about the Jesus you discover when you read his story in Matthew, Mark, Luke and John. I’m talking about the Jesus who spoke up for women, welcomed kids and made good wine. It’s the Jesus who hung out with the non-religious types and listened to them. I really love His style.

I love helping people discover that Jesus. It’s my One Thing.

Right now, I can’t teach or speak in public because my lungs don’t have the air. I can’t take others to places they normally wouldn’t go to meet the poor and oppressed because my health won’t let me. The missional community I had hoped to have going by now is on pause.

And my biggest fear? It’s not a liver transplant – though that terrifies me. It’s not death if I should not find a match. It’s that I will never again be able to carry out the One Thing that gives me meaning and purpose. What if I never have the opportunity to speak, teach or lead again? That scares me and makes me plead with God.

There are so many people who need Hope and Rescue. There are so many that feel condemned. There are so many people lost in meaningless religion. Will I get ever again have the privilege of introducing people to the Jesus I know?

Please God. Give me that chance again.

2 Corinthians 10:7-8 You stare and stare at the obvious, but you can’t see the forest for the trees. If you’re looking for a clear example of someone on Christ’s side, why do you so quickly cut me out? Believe me, I am quite sure of my standing with Christ. You may think I overstate the authority he gave me, but I’m not backing off. Every bit of my commitment is for the purpose of building you up, after all, not tearing you down (MSG)

Isabella made me cry

I’m nervous. I’m heading to another doctor appointment today. I’ve gained nearly 20 pounds of fluid and am breathing like a 90 year old smoker. I’ve tried redirecting my thoughts. I’ve tried making myself busy. I even watched a mindless sci-fi where, you guessed it, aliens want to take over the earth. Nothing has worked. I’m scared of another potential hospital stay. I’m nervous they will want to drain me again. I’m nervous about the constant pain in my right side. I’ve prayed a little but not much at all. But Isabella prays.

Isabella is a three year old, wide-eyed wonder girl. She sees people who are hurting and she prays for them. She thinks about them. She remembers them. Isabella thinks of me.

Isabella went apple picking with her momma. She said they should bring me some apples because “apples help us feel good.”

Thursday afternoon, my sweet little friend Isabella will bring me some apples.

Lord … forgive me for worrying.

Mark 10:15 “I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.”

If God is real, why …

A lot of people don’t get the God thing that I’ve been writing about. I understand. I see the morons on the news picketing at funerals just like you do. I see red-faced screamers yelling into their bullhorns looking like they are going to pop a vein at any moment. It’s a different picture than the Jesus I meet in the ancient book I read.

I’ve gotten emails from people telling me that they don’t understand my faith at all. Their reasoning is that if God really loved me, I would not be suffering like I am. Honestly, I’ve had days I’ve thought the exact same thing. I’ve had times recently at 2 and 3 AM where I’ve wept lying on the bathroom floor uttering, “Why God?” over and over again like a mantra.

Even so, I’ve come to see so many examples of people who do reflect the Jesus I see in my old book. As people have loved and served us, my mantra of “why God” has remained. But it has remained with a very different perspective. It has been more of a humbled amazement of God’s caring for us through His church. “Why do you love me so, God?”

We’ve gone from a place where I was the principle bread winner to a place where I hope to contribute crumbs here and there. While we have trimmed expenses, got rid of cable tv and worked to tighten our belts, our monthly bills continue to outpace our much smaller income. And that is where I want to let you glimpse the God stuff I opened with.

• We had no heat and then we woke to a ton of wood pellets in our yard.
• We faced disconnect notices for power and water. Then Jesus paid them both.
• We’ve needed groceries. Each time we got an anonymous $200 gift card in the mail.
• We were blessed by a local food pantry.
• Our coupon friend Heather has blessed us several times no with toiletries and food from her extreme couponing efforts.
• We needed a fall cleanup and close to 20 came Saturday and got EVERYTHING done.
• My wife needed clothes – a $200 Kohl’s card came the mail.
• Robin runs 25-30 miles a week. It helps her decompress. But it’s getting cold. A friend got her a gym membership so that she can take care of herself.
• John and Linda blessed me with a mobility scooter that has given me freedom.
• My sisters bought me a recliner so I can sleep sitting up without my lungs filling.
• My mom and dad call once a day to check on me. Dad has taken me to the doctor and mom has made me healthy treats.
• My sister Gail has used her administrative skills to lay the foundation for transplant fundraising.
• My sister Gloria has come to just sit with me and keep me company while getting me to appointments and helping Robin by cleaning up.

The Lord knows your need. Yes, we are living week to week and feel the pressure building but we are learning to trust. We are believing He will sell this big house. We’re believing I will have fall photography jobs and we’re believing He will provide food when the fridge empties after this week. God is faithful even when my faith fades.

That’s the God stuff that people don’t see. It’s the Jesus I know. He loves you and I more than we can even begin to understand. The TV cameras don’t capture it. The guy with the bullhorn makes for much better video.

I don’t know what suffering lies ahead for me but I do know my God is faithful even when I’m sleeping on a cold, tile bathroom floor.

Jn 3:16-17 “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of sending his Son merely to point an accusing finger, telling the world how bad it was. He came to help, to put the world right again. (MSG)

sleep in important

Duh. Thats like saying “ice is cold.”

We all pulled all-nighters when we we’re in college. Some lived though lock-ins. As we got older, we needed more sleep.

Today,we all need sleep like we need air. When we dont get sleep we beome more and more dimwtted

One of the negatives of liver disease is messed up sleep patterns. I’ve been sleeping about 2 hours a day for about a month now. It stinks.

I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety. Psalm 4:8 NIV