AnonymousMay 22, 2006 at 9:17 pm
You would think that as a computer scientist, I would have been skeptical enough to have backed up Ben’s thread. I didn’t. I just knew it would always be there. Now I’m nostalgic and broken-hearted that I don’t have a record of it anywhere.
I guess in some senses it fits. That part of our lives — and of Ben’s — is appropriately in the past. But if anyone out there has saved any portions of Ben’s thread, I would deeply appreciate it if you could let me know. I’d like to reconstruct what I can.
Since I’m here, I suppose I could help get things going again by providing an update on Ben. His life is still being affected by his experience with GBS. Now those effects are more subtle and indirect and positive.
You may recall that Ben was diagnosed with GBS in January 2003, three years ago. He spent 18 days in ICU and was trach’ed for a month. He spent a total of 9 weeks in the hospital and was walking in a walker by about this time three years ago. So much for the past.
Ben’s 13 now – a full-fledged teenager. This spring he tried out for the track team. Wasn’t very good, but didn’t quit, either. This Saturday he leaves for a solo trip to Arizona. That’s the story I want to tell here.
A year ago February I dragged my family to Maryville College, a small liberal arts Presbyterian college in the foothills of the Smokey Mountains, to hear the Moderator of the Presbyterian Church USA (he calls himself the part-time Presbyterian pope with no power) give a talk about globalization and world mission. Ben definitely didn’t want to be there. He made that as obvious as he knew how. 10 minutes into the talk, his demeanor had changed. He was listening intently as the moderator talked about encounters on the Mexican border and in Central America and about the Christian Peacemaking Teams and other opportunities for service.
At the end of the talk, there was time for Q&A. Ben raised his hand. The moderator called on him. Ben said “You’ve talked about all this cool stuff that grown-ups and college kids can do, but what can I do? I’m only 11…” That question would never have been asked had Ben not developed empathy for others through his GBS experience. The moderator stumbled around for a few seconds, looking for an appropriate response. Finally he said “Tell you what: If you promise me you’ll give up TV, I promise you I’ll find you a mission experience.” Ben agreed. We agreed. A week later the cable was disconnected. We’ve been TV free ever since (except for a little network news when we were hosting a Katrina family last fall).
Rick Ufford-Chase, the moderator, made good on his promise. Last October been spent nearly a week on both sides of the Mexico/Arizona border, learning first-hand about the migrant issue before it exploded into the national news. Ben was gracious enough to invite his parents along for company. You can read Rick’s impression of that trip at: (Link deleted by administration)
. Ben is mentioned the 4th paragraph in.
While riding through the desert on the way from Tucson to Sasabe, Mexico, Rick mentioned that for the last several years a group has marched through the desert in the opposite direction to raise awareness for the plight of the migrants who are dying in the desert when they try to cross into the US. Ben said he would really like to do that to feel first-hand what it was like. Rick said he was planning on going in the spring of 2006. Ben asked if he could come along. Rick agreed. We agreed a bit more reluctantly.
So this Saturday, our 13 year old gets on a plane by himself and flies to Tucson. Monday morning he and Rick go to the Mexico border. They and a group of others will then hike 75 miles overthe next 7 days back to Tucson. Learn more at: (Link deleted by administration)
and enclosed links.
75 miles. In the desert. GBS. It doesn’t seem to fit together. But somehow it all does. Can he make it? He’s sure of it. Are we worried? Of course we are. But we’ve given up thinking that we’re in charge of this kid’s destiny. Who knows where his life will lead? We certainly don’t. But we’re glad to be along for the ride.
peace and joy,
– dan terpstra
AnonymousMay 23, 2006 at 11:27 am
This just to let you know that I found all 10 pages of Ben’s thread hiding in the browser cache on my computer. Thank you, Google Desktop. Now the question becomes how to / whether to resurrect them. They’ll never live as a thread on this site again, but are they worth making available for other parents of kids with GBS? Those of you who are familiar with Ben’s story, give me some input here.
AnonymousMay 23, 2006 at 1:47 pm
I liked your idea of posting a link to all the information. Then you can add to and change the information at that link as needed to keep the thread current. Then after an update, come to these forums and bring the link back up to the top of that forum by saying you made an update. Does that make sense?
AnonymousMay 24, 2006 at 12:11 pm
I’m relieved to hear that you found cached files of your son’s story. It’s too easy to forget details over time and I personally think it’s important to have the ability to browse over the past. Doing so, reminds us of how far we’ve actually come after being struck with such a devestating syndrome.
Please feel free to share Ben’s story on my site. I diligently backup the site and editing his story is available for making updates.
(Link deleted by administration)
AnonymousMay 29, 2006 at 12:32 pm
Best wishes to your son, as he’s probably making his way to the border as I write this.
I also wish I had made copies of my old posts, especially from when my Ben was still in the hospital on the ventilator. Those were some trying times, but somehow we made it through.
AnonymousMay 31, 2006 at 11:32 am
Shannon, et. al –
Thanks for the encouraging words about reposting Ben’s thread.
A colleague at work suggested it may also be possible to find old pages using the wayback machine at archive.org. I haven’t tried that yet.
Meanwhile, I do have a reconstruction of Ben’s thread that I’ve posted on my website at: (Link deleted by administration)
It’s not complete and still needs some work, but most of it is there.
I’m going to put a link to it on a separate thread to make it a little easier for newbies to find.
Ben’s in the desert.
But he still has cell phone coverage.
We got a call last night.
He told us that they’d completed 14 miles yesterday and he was feeling great. He also said that prickly pear lemonade was [B]very [/B]pink and had quite a kick. For a little more background on this hike, you can visit: (Link deleted by administration)
AnonymousAugust 8, 2006 at 10:00 pm
Mason is my son, he just turned five. The Doctors think he has GB or CIPD. It is hard to find alot of information on kids this young. He has been really sick for three weeks. We have been in the hospital for the past two. He had an IVIV thur. What can you suggest, or where can you suggest I take him to get the best treatment?
You must be logged in to reply to this topic.