Dating my Children

Included on my list of “in case of death get these things done” was to take each of my children on a special date. I wish I were that dad that did this often, that had a practice of taking my kids on dates all the time. But I’m not. My dad and mom would occasionally take me and my sisters out on dates and they are very special memories for me.

The goal was to create a moment, a moment that would last a bit longer than the date itself. So I made sure that each of them took a camera with them and promised that if they capture the date on ‘film’ I would make them each a special video.

Each of them started off their morning with flowers, Tictacs (why? I don’t know), and a special card from me.

For my date with Jones we started off with a few games of bowling, followed up by all you can eat crab at Salty’s, and ending with ceramic painting. For my date with India we began with do-it-yourself pancakes at Slappy Cakes, followed up by pedicures together, and finishing (like Jones) with painting beautiful ceramics on main street.

As far as the kids were concerned the days were wonderful and each were left wishing that we could do more. It left me wondering why I didn’t do this kind of stuff more often and it left my wife wondering when she gets her turn (a valid question!).

Below are my feeble attempts at creating videos. You’ll notice my video editing skills are not that great…but hey, neither are my kids’ photography skills! So take that!

Talking to the kids about death

Lets get the good news out of the way: brain scans are good and clear.

While conversing with my doc about the brain scans we went ahead and asked her a few more pointed questions…and essentially here’s where we’re at.

My time is short. The moment that Jess and I have talked about in theory is now on us where we’ve got to live as if I only have a few months left…because unless some drastic healing happens (which is ALWAYS possible) I only have a few months left.

It hurts to think about.

Even more painful, however, was to talk with our children about it today. We all sat on the bed, the same bed that we sat on nine months ago when we told them that I had cancer, and told my children straight up that their daddy was dying. Mom, dad, and India sobbed. Jones attempted to understand it. India simply said “daddy I don’t want you to go” and then she curled up in Jess’ lap and cried with us for about twenty minutes. Jones’s first response was to yell “No!” with quite a bit of emotion only to be followed up with a really interesting and clear decision to not be emotional about the matter. He wanted to talk about heaven, about cremation, and about my new cancer treatment. He drew pictures of me being buried, of me ascending to heaven, of my new home in heaven, etc. He wanted to know if he could bury me with some of his Legos; he had lots of random (and funny) thoughts. Eventually he and India transitioned into caretaker mode. They picked every flower that they could to give to me, they created a prayer space in our backyard to pray for me, and they did sweet things like getting me water and snacks. Jones even offered to take over Grassroots Conspiracy for me (he also suggested that Jess remarry). Here are some quotes from along the way:

  • “Dad, do you want your scull and dead body to be burned up or buried?”- Jones
  • “Just about an hour ago I was cursing cancer. I was saying things like ‘stupid cancer, I hate cancer’ these were the words I was using to curse cancer…But what if I said ‘you stupid fuck cancer?’ I mean, i wouldn’t say that ’cause it’s bad because it’s combining two bad words ‘fuck’ and ‘stupid’…but, you know, it’s just how I feel.” -Jones
  • “Which graveyard is daddy going to be buried in?” -Jones
  • “Dad, have you made out a last will and testament yet? Because I’m wondering who you’re giving your Nook to. Because…I like to read…and it kind of fits me.” -Jones
  • “I’m going to miss you dad when you’re in heaven.” -India
  • (after drawing a picture of me in heaven with God she then drew a picture of me with a penis…and then said…) “Well I sure knew that would cheer you up! I think myself so cute and cheerful!” – India

The rhythm that this cancer seems to have owned both before and after surgery, before and after radiation, daily chemo, and now monthly stronger chemo is to have a month or so of rapid growth followed by three or so months of inactivity and stability. If this pattern continues then we can anticipate that we’ve got about three to four months of stability where we’re at and come August there will be a period of new tumor growth. The major problem now is that there’s very little space for my tumor to grow anymore! There’s very little left in my central nervous system to be taken over by cancer besides my brain and the continued strangulation of my spinal cord. So new growth essentially implies death or complete paralysis.*

There’s still hope, there’s always hope. The next set of drugs that we’ll most likely try isn’t some bottom of the line last ditch effort–it’s a good option that has a decent success rate. Additionally we’re continuing our constant work with an amazing naturopath, dietary stuff, and all that jazz. There’s always hope.

But (and yes, there is a but). But it has come to that time where we have got to adjust our life to the new reality (always hoping that this reality is not what comes to pass). When you’ve only got six months to live what do you do? Who do you spend time with? How do you spend your money? How does one leave a legacy behind? What things do I need to stop doing? What things do I need to start doing? Ahh, so many questions! And, honestly, all I can think about is how few memories I have of when I was four years old. Will my daughter even remember me? The need to both create memories and to spend time chronicling stories and thoughts via letters, videos, etc. seems to be of the utmost importance.

Anyway, at this point I can see that I’m rambling. I obviously have so many thoughts that I’m  trying to understand and I’m using you as a way to process through them. Thank you for that gift.

Again, there’s no good end to this blog. It is what it is. I do not grieve for myself–I have full confidence that I’m off to bigger and better things with the man upstairs. But I grieve painfully for and with my family. This sucks. And while we all knew that this would/could be a part of our story…I don’t think we could have ever imagined what it actually feels like to be here in this moment…and it…well…it’s no good. Keep my family in your thoughts and prayers.

 

* Much of this paragraph comes from Jess and my assessment. The doctor’s simple response was that time was very short and as an extension of that she adamantly said that we needed to move our family Disneyland trip up from June to…as soon as possible.

“Daddy I Don’t Want You to Die”

This morning for breakfast we ate Easter pancakes. Jess made Easter Egg ones, bunny pancakes, a random caterpillar pancake, and as a final joke for me an empty tomb pancake.

But as any good Christian dad would I tried to take the opportunity to talk to my kids about what the Christian community celebrates on Easter Sunday. First I asked them to see what they’d come up with and I was please to discover that after they’d ruled out Jesus’ birthday they settled on some blend between his death and his coming back to life. Close enough.

I proceeded to dialog with them about the idea of resurrection, about how Jesus died but he didn’t stay dead, and about how we don’t have to have any fear of death because it doesn’t have any kind of permanent hold on us. I’ve got to be honest with you when I say it came out quite eloquently. I did a pretty good job of taking the concepts and relating it to a four and a six year old. Somebody should have patted me on the back (apparently that ‘somebody’ is me)

Then India says:

But I don’t ever want you to die daddy!*

Hmm. I hadn’t thought of that. At this stage in the story, resurrection kind of requires death doesn’t it? It’s a bit of a prerequisite at this point. And speaking to two children who (apparently) are very aware of the fact that their daddy could die young does not make resurrection quite the hopeful topic…not something necessarily to be celebrated at this point.

It broke my heart to be faced with the obvious reality that my children are already grieving my potential early death. It broke my heart to realize that I didn’t have a very good answer to her alluded question: why be excited for new life then when all I want is continued life now. Or put more simply: why hope when my daddy is dying?

I could write all sorts of answers to the question(s). I’ve got theological answers that ring true to me and to the Jesus narrative as I understand it. I’ve got answers that bring ME comfort. But for the child left behind, for the child who is scared of losing their daddy, for the child who is watching their dad’s body deteriorate…what’s the use of talking about resurrection? I mean, seriously, when it comes down to it India doesn’t really care that one day we’ll see each other again or that daddy has been promised a new body that won’t have cancer. She doesn’t. Why should she? In each and every scenario where resurrection is mentioned it requires her losing something she loves. It demands loss and pain in her life. Why is that good news to her?

My hope (I think) is that through my writing, through the life and hope exuded from my wife, and through my presence in my children’s life they will have a context cultivated within them that will allow them to one day understand why the Easter promise is worth hoping in. Part of my reasoning for blogging so openly and honestly about all this is that if I die from cancer I want my children to have a glimpse into what was going on within me. I want them to know it’s ok to be pissed at times, to find joy in small things at times, to have hope despite suffering, that its ok to cry, that its ok to be numb, and that Jesus is with us always. And I know that if I do die from this my wife will continue, as she has always been, to be an example to them of what it looks like to live a beautiful life even when life isn’t so beautiful. And I’m trying my damnedest to be as present and available for my children each and every moment so that there are no regrets if or when I pass. Are those three things enough to shape my children for understanding Easter?

But…lets be honest…this would all just be easier if my cancer would just go away. If my cancer would just go away then we could simply let Easter be about eggs and chocolate with no questions asked. Actually, if only Jess hadn’t made those gaudy and awkward empty tomb pancakes then all of this could have been averted! Lets just shoot for getting rid of the cancer so that this whole blog will be a moot point moving forward. Sound good?

 

* there was much more that followed this statement from both her, me, and Jones. I’d love to recount the whole thing but I don’t think I’d be able. India’s statement captures their thoughts on the matter.

Is School Making My Child Dumb?

Lets be honest. My son hates going to school. He complains that it’s making him dumb. And he might be right. It’s not necessarily indicative of a bad teacher (Jones’ teacher is incredible consistent and structured which are both very important for Jones in many ways) neither is it wholly indicative of a poorly run school. Rather more and more I am becoming convinced that the system is just not setup well for children who don’t fit the mold.

In Jones’ words he says that…

I just sit all day, I’m not allowed to ask questions, I can’t think for myself, and they just want me to be like everyone else! It’s too hard when you could be playing. You’re just sitting in side where you can’t really do anything. If I were outside I’d love to play with Legos, listen to books on tape more…My teacher makes me angry sometimes.

On his first day of school Jones refused to say the pledge of allegiance, he’s kind of always marched to the beat of a different drum, and school is no different.

Don’t get me wrong, he is learning. His reading skills, for example, have developed in major ways. But the things that we love most about him: his creativity, his different view of life, his scientific mind, his critical thinking skills, etc. are things that do not have much space in school as it currently exists. Jess and I grieve the situation as it is and we eagerly anticipate us figuring out how we can be agents of improvement (not necessarily in the system but with regard to our children).

You’ve probably seen this video, but it struck me again now that my child is in first grade just now true it is.