Tag Archives: family

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.

Forgiveness

I have three brothers.  Two older and one younger.  We are all well into mid life, and we are all estranged.  There are a lot of reasons, I suppose, for this estrangement.  Some tragic and some just plain old dumb.  Our mother is in a nursing home, and our father passed away long ago. So the bind of a whole family is well behind us.  During the holidays, it often makes me sad to think so much time has gone by, and I’ll probably never know my earthly brothers any more than I do now.

For one brother, Steve, our relationship is especially painful.  He has lived a life addicted to drugs, alcohol, lying, and self promotion.  At one point he owned a pawn shop through which he became wealthy,  and his drugs and alcohol and greed eventually landed him in jail, divorced and homeless.

Steve is a clever salesman.  Ready, willing and able to say the right things to make you believe you either need what he has or have misinterpreted some event such that he is guiltless.

Recently, he entered a Christian rehabilitation facility. He’s been going to bible study, he’s been sober for 60 days, and he calls me several times a week asking why I won’t talk to him. “Afterall,” he has been saying, “I haven’t done anything wrong, have I?”

I talked to the pastor at the facility, and I told him my side of the story.  I think he already knew the darker sides of Steve, and was aware of the challenges ahead.  He said two things that have been nagging me.

First, he told me that he has been helping Steve understand his old life is gone, and never coming back.  No fancy cars.  No exotic vacations. No wife.  No big income derived from pawning people’s possessions (in fact, more likely a job with an hourly wage).

Second, he said Steve is really charming.  The life of the party.  “And I can see how God might be able to use him.”

“Wait a minute, use Steve for what?  Don’t you see that the lure and hook are set? he’s done this exact thing his whole life.  Let me give you a few examples…”

“Maybe you’re right, Paul” Pastor Keith said. “But what if God has other plans and this is the point where Steve does change and this is the point when God begins to use Steve for His purposes?”

My reaction? Not possible.  More than not possible.  Impossible.  No change ever possible and change for Steve will never, never happen.  He has caused so much pain in people’s lives, he cannot be forgiven and he cannot be a part of God’s plan.  That is solely reserved for people who are forgivable, and by no means does that include Steve.

In the last few weeks since the conversation with Pastor Keith, I have been thinking and praying about my brother and the way I have felt.  I have wondered just how much my own self is getting in the way of what God is doing in the world. And what I have been really wondering about is whether or not I believe God really can do anything and really can use anyone and really, really offers salvation to everyone.   I don’t want God forgiving him until I have had a chance to to confront him a bit.  Fair enough, right?

For those of us who have been hurt deeply by others, this is no easy situation.  But it really sits at the core of our belief.  Are we as Christians really called to forgive those who have really hurt us? In my mind, this seems plausible.  But my heart is far behind.

Each day, as I pray, the words are actually formulating in my head, and touching my heart, “I forgive you Steve, and I love you.”  I am being changed slowly.  But I admit I do not like it.  This whole thing makes me uncomfortable. There is still a lot of work to be done.

So what I am learning now is that Steve has his own struggles.  And he has a lot to overcome.  But for me, if I can’t really forgive Steve, it says more about my capacity to forgive than Steve’s capacity to seek forgiveness.  I am sure God understands this, but my sense is He wants to conform me more to His likeness — and his capacity for forgiveness — because that is what it means to be Christian.

Family

Sunday can be the best day of the week.  Sleeping a little later than normal, being lazy around the house, reading, cooking or tinkering with a little project.  But what really makes Sunday different is church.

Church is that guaranteed, once-a-week reminder that the Creator still exists and the Creator still wants to be engaged with me.  It’s a chance to reset and regroup before the week gets going. So on Sundays, I sing with gusto (I love to sing, not too sure how on key I am…), pay attention to the sermon (and even take notes), and chatter and meet and greet people as much as I can (not too much into the fellowship hall thing).

But still, there are days and weeks when sermon series don’t do much for me, when my mind wanders to things at work, where particular worship leaders choose songs that bore me, and seeing so-and-so can be painful or awkward.  Or any combination thereof in small or large measure.

In other words, going to church can sometimes be a big disappointment, and it can be full of the politics of daily living.  Some of my friends up and leave church when it gets a little mundane or something happens that makes them uncomfortable.  But for me, I look at church and see it as a microcosm of the rest of the world.  Not something to be escaped, but something to live in.

So even when going to church is a little tough, I remind myself that I did something about three years ago that completely changed my perspective and helped me a lot – I joined my church. It was a totally voluntary act. There were no strings attached, except…

I made a covenant, I signed a book, and my brothers and sisters in Christ formally welcomed me to the community.  I committed to be their brother.  To pray for them.  To be relied upon.  To be faithful.  To be my best and to grow away from my worst. To be human.  To be a disciple.  To give cheerfully.  To love.  To forgive.  To welcome.  And they did the same for me. Willingly.

When I go to church on Sunday, I go not only to worship God, but also to be among my brothers and my sisters, the people with whom I made a covenant to be their brother, with God as our Father.

It’s this sense of church that makes everything else seem moot: we’re a part of His family.