The latest on Sean – the struggle continues …

12 February 2012

First (and last, and middle), thank you to everyone who has been praying for my son Sean for the last 2½ years in his battle against Leigh’s disease, and praying for us as we battle alongside him.  It’s been a long, hard, tiring struggle, and will continue to be one for … well, as long as it takes, I guess.  But we know that we wouldn’t have gotten this far without the help of God – or of our circle/cloud/polygon of friends who have stood by us in all this.

It’s been about four months since I last wrote, so I suspect you’re probably wondering what changes have taken place over that time.  And the answer is … well, not a heck of a lot, actually.

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The latest on Sean — rolling along (but not for long?)

15 October 2011

(The caption is a quote from rapper Chamillionaire’s song “Ridin’.”  Rest assured that it’s the first — and likely the last — time I’ll be quoting Chamillionaire on this blog.)

So I’m picking my son Sean up from school a couple of days ago, and I’m talking to his teacher, Mr. Cornelison, as I load his wheelchair into the back of our van.  (This is always a bit of low comedy, as we have a ramp we could use for that purpose — except there’s enough room in the van for the wheelchair OR the ramp, not both.  So I have to lever the chair up by getting the foot pedals up on the lip of the hatch, then using them as the fulcrum to bring up the rest of the chair.  Great for my arms, but it sure does look goony.  And sometimes the pedals slip, and I have to start all over …)

Anyway, Mr. Cornelison is watching my struggles, and he says something that absolutely floors me: “Ya know, ya don’t have to bring the wheelchair if you don’t want to — he doesn’t really need it here.”

If you were to ask me to sum up Sean’s continued recovery from the ravages of Leigh’s disease, in one sentence, I don’t think I could compose one better than that.  “Ya don’t have to bring the wheelchair if you don’t want to — he doesn’t really need it here.”

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Thinking inside the box(es): the blessing of a schedule

16 August 2011

I’m coming up on three years of being unemployed now.

Now, I will admit there are a couple of asterisks attached to that statement.  I did a three-week temp job riding public transportation for a consulting firm.  I’ve also done a little freelance wordsmithing (business letters and the like) for a couple of friends who needed such things done.  And from August 2009 until last month, I was spending several hours a day caring for a severely disabled child.  But still, I haven’t had semi-permanent, full-time employment since just after Lehman Brothers went splat.  (Probably not coincidental.)

All that time NOT spent on a 9-5 or similar schedule has been rough on me.  I’m someone that needs to be busy — even if I’m doing nothing much, it needs to be a “doing nothing much” that keeps me focused and occupied.  (Prayer isn’t a problem; that’s “doing something,” and I have to be focused so I don’t miss what God might say.  But no silent meditation for me, thanks.)  Which means that I end up finding things to fill the time, but without the requirements of a job, filling the time can end up meaning looking at funny captions on pictures of cats for two hours at a clip.  And that sort of thing was beginning to happen more and more.

Clearly, I needed to get myself on a schedule.

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The latest on Sean: full time and getting stronger

2 August 2011

For all of you who have been praying for my son Sean for the last two years in his continuing battle against Leigh’s disease, I want to give you my thanks.  I also want to apologize, as it has been five months since I’ve given you a full post on Sean’s condition.  Things have been busy here, but not THAT busy.  But now, with him in school full-time, I have extra time (and extra incentive) to fill you in on the happy details.

Yes, you read that right – Sean is now, finally, in school.  Not just home instruction; actual, six-hours-a-day, I-have-to-get-him-there-by-8-o’clock SCHOOL!  And therein lies a tale …

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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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Projecting 2011

4 January 2011

So here we are, four days into the new year.  I’m sure that you or someone you know has made some “New Year’s resolutions,” statements on how you’re going to do things differently in 2011.  Maybe you’ve even broken one or more of them already.  Me, I don’t really do those anymore, for two reasons:

  1. My tendency is to constantly make resolutions for myself year-round, so setting aside one time of year for them would just be excessive.
  2. It doesn’t work all that well.

I look back at my resolutions for 2009 and just laugh — what with my son Sean’s Leigh’s disease, my mom’s death and my lack of willpower, none of them lasted to Labor Day.  It’s just like the bit in James 4:13-15 — you can make all the plans you want, but if God has other plans for you, your to-do list is dust in the wind.  So, no N.Y.R.s for this little black duck!

However, I’m not the type who can simply burrow through the days with no measurable long-term goal.  I used to get those from my job(s), but with being Sean’s full-time caregiver/physical therapist/doctor wrangler, that’s simply not in the picture at present.  And you can’t really set personal goals for someone else’s medical recovery, especially when said recovery is as off the charts as Sean’s is (and hopefully will continue to be).  So I realized as 2010 wound down that I needed some projects, some things that could provide goals (however unimportant) to keep the goal-shooting-for part of my personality occupied and out of trouble.

And given the events of the last couple of years, I figured picking them myself was probably the wrong move.  So I needed to talk to God and find out what He wanted me doing.  Only I wasn’t quite prepared for what He had to say …

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Sunday morning, coming down

7 November 2010

Sunday mornings have been kind of different for me and my family lately.

We’ve changed our location of worship, shall I say.  We’ve found somewhere the Scriptures are taught in much more depth than in most places we’ve been.  There’s a greater sense of the presence of God, and more recognition that He wants to speak to us.  And at the same time, there isn’t the sense of frantic busyness, of noise and fury and trying to force the Holy Spirit to show up, that we’ve so often seen.  My daughter Charlotte, I know, has found it a real chance to grow, and is getting a lot more chance to interact and contribute than in previous places.  Even our son Sean, wheelchair and all, has been welcomed and seems to be getting something out of it.

And all without leaving our house.

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