How to Create Dying Memories

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 did are.

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.
Don’t be fooled, though, this trip has been magical thus far. No joke. Staying at the Grand California Hotel has been one of the most amazing travel experiences of my life. No joke. My kids love it and would often prefer to hang out on the hotel’s premises instead of going to the theme parks. When we showed up on the first day and greeted my children by name at the door only to quickly give India a signed photograph from a handful of Disney princesses she not only beamed and giggled like a school girl but then turned to Jess and said in the most whispered and sacred voice that can’t be captured via blogging “…mommy…” it was if it was all she could say. Beautiful. Watching Jones go through Grizzly River Rapids with his incredible schemes for never getting wet (that at this point have worked 100% of the time) is so funny and so ‘Jones’. Jess and I keep looking at each other and wondering how we were able to go on this type of trip. We feel incredibly lucky blessed.
I guess what I’m trying to capture here is that I think the collection of ‘last moments’ that we’ll be experiencing over the next 3-6 months (though I’m eager to be completely off in these projections! I’m looking forward to being made a fool when 35 years down the line I’ve got to pay all of you back who are/have helped to make this trip happen) will not be defined based on context, money spent, food eaten, or any other externals. Don’t get me wrong, they are incredibly important. They are, they are very important, hence the reason we’ve got a growing list of places that we would like to go to over the next few moments. But that simply provides a memorable context, they DO NOT define it. It’s the raw knees from kids sitting on them, it’s in the moments of grace and gentleness, it’s in the conversations that happen, the games that are played together, the laughing and crying that happens together, and the “ordinary moments” that will in the end create the extraordinary moments that we are all craving.
Translation: I’m making all this up and I can only say that I think this is what I think. This is my first attempt at all this (my first attempt at having 3-6 months to live). I’m hoping that this is just a trial run and that I’ll get another shot at this later (I’m shooting for having 3-6 months to live in 30 plus years). But until all that’s made clear I’ll just keep trying and keep typing along the way.
Thanks for reading.

13 thoughts on “How to Create Dying Memories

  1. God bless you, friend. Through this blog and your friends, there are many of us out here whom you've never met but are 'prayer warrioring' (if that's even a term) on your behalf. Philippians 4:6

  2. We don't know each other, but I stumbled on your blog and… there are no words. Your strength is an inspiration. I lost my own mother to cancer four years ago, and I'd like to make a few suggestions.

    – make videos for your children.Tell them you love them in them. Offer advice for life milestones that haven't yet come to pass — driving, jobs, college, marriage, children, etc. Even seeing you sick will still be seeing their fathers face.
    – Pre-write birthday cards. This sounds silly, but I found one that my mother had prepared, and it is one of my most treasured possessions.
    -Write out, or record you talking about your life – childhood, family memories, how you met their mother, all of it.

    You have the prayers of strangers. I hope, ferociously, that you beat this. Someone has to.

  3. I don't know you but my son, Adam, knows your father and meets up with him at Starbucks pretty regularly. Adam asked me to pray for you and your family…….. 'Just want you to know that I am praying that the God of all grace will keep and comfort all of you.

  4. I feel urged to tell you, even though I don't know you, that no one knows when they are going to die, and my prayer is for you, to live and fight with every nerve in your body. Don't let cancer defeat you. I am a cancer survivor, so I know of what I speak. Also my mother in law was told she had 6 months to live, that was 12 years ago. They put my mother in law on hospice a year ago, and she is still going strong so they took her off. I am 26 years living life after cancer. Doctors don't have all the answers, only God knows. Keep positive and live to live, not to die.

  5. I've got nothing better to say than I love you and your family and I am glad to see you fight so hard to be sad in ways that don't consume your life.

  6. It's likely that you don't remember me but I remember you from years of TNT's and youth rally's in the Northwest. I've been following your blog and over the last week have been crying (and definitely praying over) each one that comes out. Thank you so much for sharing your story and your faith. I'm praying for you and your family, and even more frequently for your kids. (Probably something about my life stage, but I feel compelled to pray for them more often… honestly, nearly every time I look at my son.) Glad you're enjoying Disneyland!

  7. I am so glad you are enjoying your time with your family. You all are so amazing! I am continuing to pray as well. Do not worry about money, it will come, by the way. And when you are still here in 5 years I hope you still don't worry about the money you had to do your bucket list things because I know that we all are more than happy to share and in some way help you all experience life. May it last so much longer than you all can imagine!

  8. It is in human nature that when they have anything in their life or the excess of anything in their life then that thing will have no more attraction for them in their life and they often become bore of it.

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