The (long-overdue) latest on Sean

20 February 2011

I know, I knowIknowIknow – I’ve been promising to give an update on my son Sean’s continuing fight with Leigh’s disease for a while now.  I apologize for the delay, but I do have an excuse.  Namely, every time I plan to write it, some new development appears to be on the horizon, and it seems right to wait so I can give you fuller information.

But there’s a limit, and I’ve really waited far too long (I want to say it’s been four months since the last recap).  Thank you to all who have been praying for him all this time – it has meant more to me, and to Sean, than I can express.

And now, the news …

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Took a couple days off

1 September 2010

(… with apologies to Huey Lewis & the News …)

Yeah, I been blog-gone since last Friday — for what I think are very good reasons:

  1. I was tired.
  2. I needed to rest.

Both of which will not exactly be news to the regular readers of this space — or to anyone who knows me.  What with all the stressors of the last year-plus, “being tired/needing to rest/not really knowing how to rest” has become a regular theme of my life and writing.  That’s been compounded in the last couple of weeks, as my wife Nina has gone back to work as a Special Education assistant (more on that later this week), and I’ve had to pick up sole care during the days for Sean again.  So my energy level, not high in the first place, took another dive.

Thus, I’m taking another run at learning how to rest.  And, with God’s help, I’m trying a new tack.

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A day in the life

12 April 2010

This is one I’ve been thinking about for a while: taking a page from one of my favorite writers,’s Bill Simmons, and doing a running diary of a typical day for me, with Sean and the rest of the fam.  Not that there’s really any such thing as a typical day – each day has its own variations, its own minor crises.  But I wanted to give you a window into the experience, so I’m taking today, Monday, 12 April 2010, and documenting it step-by-step.

Here we go …

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The complete lowdown on my son

6 April 2010

I apologize for how long it’s taken me (about a month) to post a full recall on what’s happened with my son Sean since August.  Thank you to all of the hundreds of people who have been praying for him or sending your best wishes, from Oregon to Florida and from Scotland to South Africa to New Zealand.  I can’t speak for him, but I know how much my wife and I appreciate it – and I have zero, ZERO doubt that those prayers have been the difference between life and death for him.

But boy, has it been hard to put fingers to keyboard and write about it.  I’ve literally dreaded going back over the eight months of worries and fears, grief and dashed hopes, struggles and stresses and rages and work, work, work, work to try and write something relatively coherent about the whole situation.  A hundred times I’ve pushed myself to get it done, because I want you to know how it’s been and how it’s going … and a hundred times my soul drew back.

But I want you to know, and if you’re new to this blog I want you to join in the fight too.  So (deep, cleansing breath) here goes …

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