So you’re dying and you want to make every moment count, you want to create amazing memories over your potential last few months, you want to cross things off yours or your families bucket-ish list, you want every single moment to be special and memorable. So you go to Disneyland…or at least we
First off let me say that we’re having an amazing time. But secondly, and this is where I’d like to dwell, it’s not all it’s cracked up to be. Disney isn’t the problem–it’s as backwards to what we believe in as ever and as amazing and fun an experience as ever. The problem is that no matter how much fun you want to have, no matter how many amazing things there are to do, no matter how many people (surprisingly and in painfully gracious ways) give generously to allow you to do whatever your heart desires…you’re still dying of cancer. And we all know it. I know it. My wife knows it. And my children know it. We are not necessarily talking about it, but it’s there like a dark cloud. In fact, there have been a few moments when my wife and I realize that we seriously only found out and told my kids that I’m dying just a couple of days ago! It literally JUST happened. What this translates into is that my son Jones’ anxieties are at record levels (if you know him and the fact that he has an anxiety disorder you understand what this means), Jess and I are emotional messes, and India can’t function unless she’s sitting on my lap (on my wheelchair). The intensity is painfully thick…painfully.
So what do you do? How do you live in the tension between reality and ideals? Here’s what our meager attempt to allow this trip to be what it needs to be while at the same time trying to make it an epic experience in and of itself is turning out to look like:
- No pressure. None. If we don’t hit up every ride, if we don’t hit up the best rides, if we miss out on something “important” we’re trying to remember that it. does. not. matter. Not one bit. The point is to be together. Translation: headed into day three we’ve done all of one ride in California Adventure, we haven’t seen any shows, and haven’t hit up three of the ‘big’ mountains yet. It kills Jess and I (who happen to be professionals when it comes to sucking the marrow out of DL)
- Pretend that money doesn’t matter. We’re not excessive here (I’m not sure we’re physically able to practice this one considering it goes against every bone in our bodies!), but part of the freedom we’re trying to give ourselves and our kids is that they/we can order what we want for dinner. That might be normal for you, but rarely in my whole life have I ordered whatever I want. You share, you buy the smaller version, etc. Stuff doesn’t bring happiness and doesn’t healthily fill a void, but it is fun sometimes! So we’re letting the kids buy a few extra souvenirs, an extra churro here or there, we’re letting them buy those expensive balloons that we know will still be deflated by the morning regardless of cool factor and cost, etc. Translation: we’ve spent more than expected and I’ve eaten well. But lets not lie here, no matter how much you’re willing to spend…a grumpy emotional kid with texture sensitivities and high anxiety will not like anything you buy for dinner! One direction that we’ve chosen to take is to spend a bit more money on memory-type souvenirs such as artwork and photography…and I don’t regret any of this one bit.
- Pay attention. Probably more than anything it’s this one that matters. The kids need attention, they want it, they deserve it, and as witnessed through their occasional outbursts they demand it. When it comes down to it they could care less about the rides or the food; what they want is our presence, they want to know that even though dad might be leaving he is still here right now. Translation: cell phones haven’t been out much. My legs are raw and have scratches all over them from kids sitting on my lap. Jess and I are fighting being grumpy because while the kids need attention we want distraction more than anything else!
- Be Gentle. This is where the rubber meets the road. Stress, intensity, Disney, death, sleepiness, and anxiety amongst other things leads to a context where we’re each needing more gentleness and grace from each other more than ever and yet are feeling less equipped to dole it out than ever before. If this trip is going to work (and it is) it’s got to be on the back of a gentle and kind spirit toward each other. Translation: I’m failing here painfully! Or at the very least I’ll have segments at different points of each day where I come to the awareness that I’ve failed miserably. Jess and I are working together, however, on gently reminding each other of our own intensity and lack of gracefulness in our responses to others (namely the two little ones we brought with us).
- Be flexible…but remember to eat. Flexibility has been a huge importance…but what we learned today was that it can’t come at the expense of taking care of ours and the kids’ actual needs. There have been times that we’ve all been having such a good time that we forgot to eat a meal…which is fine unless your emotional rope is already a twisted, knotted, and tangled mess. Flexibility has allowed us to make it this far; flexibility coupled with proper self care will get us home in one piece. Translation: I think I already made this one.