It’s so rare

I just came back from a meeting of rare disease patients. These are the people who have few treatment options, and who have few medicines and therapies being pursued on their behalf. It’s an incredibly complicated issue, and sometimes when there is a glimmer of hope that something might work, there’s an insurmountable safety issue or the stability of a compound can’t be achieved. In other words, the drug might have some serious side effects, or it can’t be made consistently.

On the last night of the event, there was an art show of paintings by artists who had captured children living with these diseases. This group of artists exists to bring to the world’s attention the suffering and hope of the estimated 350 million people worldwide who have them. Of the 7,000 known diseases, only about 150 have treatments.

One painting caught my attention so firmly. Colorful, of a boy, standing and laughing. It invited me in. And made me feel the wonder of life from the eyes of someone young and seemingly living his life with a degree of joy captured in hues and texture that must have taken weeks to create.

After walking around in the crowded room, I struck up a conversation with a man looking at another painting, and he observed to me its subtle mystery of hope and whimsy. And we talked about the event, and the challenges of living with these rare diseases, our families, and life in general.

At one point, I asked him if he had seen a picture of a laughing boy, and he said that he had. So I shared my thoughts on this work and talked more about how the painting conveyed so much zest and openness. After a few minutes of talking about this picture, the man said, “Thank you.” I said ‘You’re welcome.” He said, “No, you don’t understand, I am the artist, and the boy is over there.”

But the boy was not walking. And he was having a lot of trouble sitting up. But he was laughing. The artist explained that when he painted the picture about six months ago, the boy could stand, but his disease was slowly killing off his white brain cells, and he was gradually slipping away. At age 6, he would not live beyond 10. There is no cure.

There are only 200 known people in the world with this condition. I had the honor of talking with the man who painted life, and I was also honored to see that the boy was surrounded by a loving family who was playing with him, while he laughed, and clapped his hands, and looked with the deepest, most expressive eyes at the world around him. This family loved him unconditionally. As I listened and watched, there wasn’t regret and sadness. There was life and a real presence that the moment was now. Not tomorrow.

I have been reflecting on the age of the universe. It’s 14 billion years old. Galaxies and solar systems formed, stars came to life, planets found their orbits, and life emerged on at least one of these places, and now this moment with the artist and the boy and his family came and went. It was 14 billion years in the making. And I was there.

What an incredibly blessed day I had. In a crowd of hundreds of people, at the right place and time, I encountered creativity and love coming together.

I have been praying that God would make these moments happen more for me. I want to know that His love is real and that there is a hope that is greater and bigger than anything I know. I want to live life in renewed ways and be open to the mystery of a creator, a redeemer and a sustainer who is as concerned with the forming of a planet as he is with a single life in a single moment. It’s a simple prayer. Give me your eyes and ears.


25 Reflections of Gratitude on this Day of Thanks Giving

Whenever I start my day expressing gratitude, then I am statistically assured of a positive (+) day more than a negative (-) one. My own research has proven this time and again.
Gratitude is a noun.  It describes the state of feeling thankful for something that’s been granted or given without wanting anything in return. And there’s no verb form of gratitude.  To show gratitude —is to thank. So here are my 25 refections of gratitude on this day of thanks giving.  There is an order in this list.  But it might not be what you think.
  1. Tracy, my wife of over 26 years.  Best friend.  The one who understands me the most.  And makes happiness real.
  2. Two sons, both in college, who keep me young by challenging my middle-aged thinking.
  3. In-laws. Two cherished people who have been unselfishly generous. And still with us in their 80’s.
  4. Sisters-in-laws.  Brother-in-law.  Nephew. That extended family who are fun and love me just the way I am.
  5. Bikes.  Biking.  Going for rides.  Alone.  In groups.  Big hills.  No hills.  Just bikes.  Cycling.  Oh, and hand signals and lights (keeping me safer from all the distracted drivers out there).
  6. Dogs.  Now we have four.  Misty is old and blind, but still a fetcher.  Linus curmudgeon.  Wilson blissful.  Lucy a terror (but too cute for wrath).
  7. Wine.  Mostly wine.  Sometimes bourbon.  Tequila.  Beer.  Never alone, but with people I love and care for.
  8. Work.  A job that has been been the most challenging I have ever had.  Stretching me outside my comfort zones.  Making me notice new things.  And listening for truth and pursuing what is right. And a boss who is super awesome.  And peers who make work more than just fun.
  9. Change.  In small ways and big.  From daily routines to big life events.  I am not always good at it, but learning how important change is to moving forward.
  10. Hundreds of years of peaceful transition of US political power.  It works. Let’s hope it stays that way.
  11. Reading.  Books. Blogs.  News.  It’s amazing really, that we can recognize shapes that represent words that convey meaning.
  12. Music.  All kinds.  Classical, rock -n-n roll, downbeat.  And so many ways to listen to music! Napster. Pandora.  It’s like having an infinite music collection. Although albums did like kind of cool.
  13. Movies.  Big epic thrillers.  The more science fiction the better.  And romantic comedies.  I just like having my mind bent and my heart tugged.
  14. The Internet.  Access to so much content. And some of it is true! And weather forecasts galore (and more accurate than ever!)
  15. Trains.  Recently, started taking the train to Cambridge.  Too long to drive.  But I get tot read more.  Listen to music more.
  16. A house we’ve modified and cared for where the guys have grown up.  Dogs have run around.  People have visited for long and short times.
  17. Food.  Mostly ice-cream and chocolate.  And a good burger.  With cheese.
  18. Health.  At 53 no major issues.  That’s not a jinx is it?
  19. Oceans.  I could sit on any beach at any time in any place and find tranquility.
  20. Writing.  I don’t write as often as I would like, but when I do, my mind is focused.
  21. Church.  It’s a community.  And I have come a long way in understanding and trusting in Jesus.
  22. My parents. Long gone, but they brought me to life.  And my brothers who shaped my early years.
  23. Coffee.  Need I say more?
  24. Navigation systems.  Never lost.  But also no need to follow a planned route.
  25. Today.  Another gift.  Another opportunity.
I have others.  Cinnamon frosted pop tarts.  Pecan cluster/Turtle blizzard from Dairy Queen.  Fall colors.  Thunder storms.  Swimming.  Saunas.  Outdoor showers.  Back packs (long history).  Spell chekcers.
Happy Thanks Giving.


If my life were made up of busy tokens — a token representing a level of effort to be allocated to some activity —  and I had 100 of them, I would at the present moment be using them all.  In the past, I may have taken my 100 tokens and only used 85 consistently.  30 for family, 20 for spiritual matters, 10 for health, 25 for work, leaving about 15 to distribute to a multitude sof pontaneous busyness.  

Lately, though, I consume all my busy tokens. And I could use some more.  I’d say my ratio is now is 70 for work, 15 for family, 10 for spiritual matters and 5 for miscellaneous things that have to get done like raking leaves.  

It’s happened over the last 18 months, but work has become more and more the place where my tokens go.  It wasn’t that I had planned this.  It sort of just happened. I work for a growing company that is continuously introducing new products on a global scale.  Which just leads to more work for me, my team and many around me.  

It’s an imbalance.  It’s hard. And I am keenly aware that I am not alone.  Many friends share the same situation and I see many for whom work has become more and more. Most importantly, it’s temporary (you know, mortality being at least the upper limit of my employment).

What is it that Paul says in 2 Corinthians 4?  “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

Eternal.  Yes, in my current context, eternal is still where I gaze.   


I Toil at Work

“All toil and all skill in a man’s work come from his envy of his neighbor.”  Ecclesiastes 4:4.

I don’t really think that is true.  For some people.  But for a lot of my career and a lot of the careers of others I have seen, a little bit of envy of “something” can go a long way as a motivation factor.  Of course, as Jesus has taught us, our neighbor is everyone.  So there is a lot of opportunity to look at someone else and find something about that person we might desire. Money has not really driven me, but show me a good title, and I just might be all about some role envy.

A simpler way to look at this is to ask, “What motivates me in my work?” I think it is a really important question because our motivations drive our behaviors.  I think if we really ask ourselves this question, we might be surprised at the answers. Is it money?  Or being a great politician?  Or power?   Or being an inspiring teacher?  Or some other motivation?  And what do those motivations lead to in my daily interactions?  Am I little sharp tongued, or too aggressive, or a tad bit dishonest, or completely trustworthy or willing to help others?

Now that I have led you down this path, let me ask this: How is it as Christians we can even ponder that question: what motivates me in my work?  We are either motivated by Christ or we are not.  He’s either at the center of all we do, or he’s not.  Is it even remotely possible that we can separate our work motivation from anything other than following our Savior?

All toil and all skill in a Christian’s work come from surrendering to Jesus Christ as Lord of all.

Seriously, in all that we do as Christians, we do under the Lordship of Jesus Christ.  Including work.