I’ve got no words left.* I have been overwhelmed the last few days by the reality of my health, by the response by the world at large, and by unknown future ahead of my family. This is probably a bit of a blogging faux pas (Ha, I don’t even know what I mean by that) but I’m just going to spout off some bullet points. As I think of things that I want to share I’m just going to bullet point it up. I’ve had all sorts of ideas for how to follow up this grim news and y’alls amazing response…but again, I’m at a loss for quality words right now…so bullet points will have to do!
- For seconds at a time I’m tempted to not believe my own reports. I’m tempted to just say “Nah, that can’t be right. I’m not seriously dying. I couldn’t seriously die in three or six months. Nah, nope…” I think much of this is actually stemming from the fact that I absolutely cannot conceptualize what the next stage of my bodies digression will look like. Up until now it’s always been varying stages of numbness and back pain (to overly simplify things a bit). I can conceptualize what worse back pain looks like, I can conceptualize what my feet being more numb or my hands tingling will feel like. But the next stage of my bodies brokenness is going to be wholly worse and I’m not sure I’m able to imagine that reality! And to be honest, I think I’m ok with that.
- I can’t keep up. I’ve always prided myself on responding to virtually every email or message I get. I love people, I love conversation, I love engaging in dialog, but I’m losing the battle–err, I’m losing the battle TO MY INBOX is what I meant to say. Y’alls response has been amazing, and beautiful, and refreshing, and completely impossible for me to keep up with! Thank you! Keep ’em coming but there’s no chance I’m going to be able to track. You all are amazing. Thank you.
- My friend Boone wrote this beautiful song about our story. I don’t know how people do this stuff, but it’s beautiful and you should listen to it–not because of me but because it captures Boone so beautifully, who he is and what he’s all about. http://su.pr/AfAgjg
- I’ve been touched by a number of people’s blogs that they’ve written over my times of being sick. I’d love to share them all with you ’cause they’ve meant a lot to me…but finding this stuff has turned out more difficult than first intended! Here are three that I was able to drum up: http://su.pr/7OSar8 , http://su.pr/2KjuEe, and http://su.pr/1i6o8y
- We’re going to Disneyland. In two hours! Without going into all the horrific details we spent most of yesterday agonizing about the fact that there was no feasible way to move our planned June trip to Disneyland with all of Jess’ family forward to a time where we knew (or at least had a more safe guess) that my health wouldn’t ruin the trip. We worked hard to figure out any possible way to move it forward but due to different scheduling things it just wasn’t happening. That’s when someone said something simple and completely enlightening “This is your moment to do what you want to do, to not miss out on something that’s important to you. So why don’t you go to Disneyland twice?” It completely rocked our world, it wasn’t even a thought, and yet it solved everything! So we came home and bought tickets for today! What’s happening is that we’re doing the ‘dream vacation’ staying in the hotel we’ve always and forever wanted to stay in, we’re doing three concentrated days, flying down (we’ve always driven), and it’s (again, for the first time) going to be just jess, the kids, and myself. This now frees us to still have our extended family Disneyland trip (that’s been moved as far forward as possible to May). If I’m sick during that time there will be less pressure to make that trip the “everything trip”, we’ll be able to allow it to be an important time with family, and it now frees us to anticipate that trip rather than dread missing it. We obviously cannot afford two Disneyland trips but people over and over have been incredibly gracious in caring for our family…and this is no different. Thank you to everyone who has and is continuing to make this stuff a reality for us…it brings me to tears… awkwardly as I’m sitting in bed next to my wife.
We love you all so much. From dinners that have already been brought, to money to send us to Disneyland, to notes, to text messages, and more. Not that I’m an expert on the matter but it’s been refreshing to hold onto such a huge number of appropriate feeling messages (my inbox is flooded with lots cuss words, prayers, and stories of hope…as it should be!). We’ve got no idea what the next few months look like but I do know that we’re going to both rely on many of you and ignore lots of people as we attempt to focus on fewer and fewer things. What a trip all this is! Who would have thought one year ago I’d be doing or writing any of this? And yet what a blessing it is to have the gift of preparation!
Ok, i’ve got nothing left…oh yeah, and I’ve kind of got to finish packing. Did I mention I’m leaving for Disneyland soon? Hey-Oh!
* Lets be honest, that’s not true! I’ve always got something to say…it might just be that it’s not something wholly worthwhile to say!
As I read each update I get so much inspiration from your family and your strength. The world has been lucky to have you in it. I would love to see a publication of your blog with all the responses. I think your story is a powerful one. I can feel the emotions pouring from your words. Enjoy Disneyland and your family. Say hi to Mickey.
First, a healthy amount of hope, denial, or some combination is appropriate in your situation. Whatever you're feeling at the time is what you're feeling at the time. My guess is you have a low tolerance for "bullshit responses" right now when people try to tell what make THEM feel better.
So glad you're doing the 2 trip idea! The SoCal Episcopalians are praying for excellent weather and reasonably good health for you while you are in the neighborhood. I've been keeping them updated on your situation for a while.
As for answering each email… You have the right for now, to focus on loving your family for as long as you can be in physical contact with them (and ignoring the rest of us)!
Have fun in Disneyland.
I like your friend's song. Have a fantastic time in Disneyland!
I learned this phrase from my sister-in-law regarding waiting in line and the "fast pass" (maybe it's called something else, but you make an appointment at a certain time and then come back then saving you waiting time)…But ask the Disney people "to give you a magical moment"…and it's surprising what they'll do for you.
By the way, get what you want, eat what you want, stay where you want and don't worry about the money. If God doesn't provide more than enough, I'll talk to some friends down here and we'll help!
Still torn up over your situation, blessed by your faith, courage, and touched by your desire to live a story worth telling in the midst of great struggle. Praying…. bw
Most valuable one post you've share is here about the back pain concerning. I've suffer this pain when I've setting in my office for the long time. Actually, I don't know why I feel this pain I hope you'll helps me to relief this pain.
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