Monday, June 22, 2015

Father's Day+1

Greetings All,

I did my last post on Memorial Day, so it seems like Father’s Day is an appropriate enough time to do this post. You’ll note that this post is not up on Father’s Day, but the day afterwards.  Because…



….we buried Amie’s remains today.  We had some speedbumps on the way towards getting Amie ready for internment, but the time was here, and we wanted to get it all wrapped up before we headed out on our roadtrip (more on that later).


This little guy is Shelley's gravemarker for Amie until the real one arrives later on in the summer.  Isn't she awesome?

The burial (internment is the proper word, but sounds too formal) went well, as it was just her ashes in this fantastic urn Shelley chose.


Shel and Anya read her favorite book, Flip and Flop.  



We’d each read that book to Amie dozens of times, possibly several hundred times in Shelley’s case.  Additionally, Shelley made a tiny little grave marker for her as well.

Afterwards, we went to the monument office to formalize the design for Amie’s gravestone.  Shelley had been doing research, as she does, for a while, and had decided on the rough design that she wanted.  I followed that up with a few artistic design flourishes myself, and we settled on a design today and it’s on the way to the CAD designer for final proofs. 

As an aside, it’s pretty darn cool how the whole process works.  They can incorporate pretty much anything into the design, because it’s all sandblasted into the face of the marble based on the design that’s programmed in. Of course, anything can change, so we won’t spoil anything until we know for sure.  I think y’all will like it.

We gave you a look back when we purchased the site, but this is how it looks in the summer.  Lake View Cemetery in Howell is gorgeous, and probably the prettiest place in Howell…as strange as that is.




Those two pictures are the various views you have as you stand at her grave.  Nice, eh?

So.  Her remains are buried.  Not sure why that was so important to me before we left on our trip…but it seemed like it was just unfinished business.  The Native American influence on me says that her spirit needed to be laid to rest,  and that her lack of a “space” to find that rest was necessary.  I don’t think that’s necessarily how I feel, but I did feel pulled to make the final arrangements for her before we started west.  It settles me, in some deep way.

Afterwards, we went to see “Inside Out”, the newest movie from Pixar.  I love Pixar, as it is nearly always the opposite of what I consider the insane over-commercialization of the movie landscape*.  They do not release movies before they are ready*, and the directors dedicate years of their lives to get them there.  They focus on story, and character development, and almost always* have profound emotional journeys for the audiences who watch their films <the introduction to “Up!” where they tell the love story of the couple is by far the most powerful love story I’ve ever seen on film…and there are no words in it.  Go watch it now.  I’ll wait,>

Anyway, the movie today.  I haven’t cried so much in a movie…forever.  Without a doubt.  Firstly, it was a great movie, as I expected.  But I can’t really say that without bias.

Here are my biases:
  • The main character was ripped out of her comfortable world, where she had everything she ever wanted, by forces that she could not control.  She faced unprecedented obstacles and challenges, and weathered them as best she could, and most of the time with a smile and a shrug.  This is Anya most days.
  • The movie has a huge focus on “core memories”, where there are these glass balls that represent memories, and the importance of them are paramount.  They fuel the centers of Riley’s personality.  When some of them get messed with (Sadness, don’t touch them!), they have profound changes to her personality.  Once again, I thought about Anya, and what this whole thing has done to her core personality.  Who might she have been had all of this not happened, and who is she going to be now as a result.
  • They also spent a TON of time showing these memories in glass balls, and how some of the memories fade, get ejected and fade away when not accessed…and I know that’s the future with a lot of my memories of Amie, the ones that are left that is.  The nature of memory is pretty awful already (thank you Radiolab for confirming that   ), in that every time to “remember” something, you’re subtly changing that memory and shaping it to the new reality that you have.
I say that because the Teen Mom OG special aired thisweek,  and a quick 1-minute-ish video aired of the fundraiser events from last July.  It was very nice to see that, and the events of that day, as many of them had faded in the punishment of the past year.  Seeing Amie tell her favorite knock-knock joke was great, but the thing that blew me away was the .5 second clip of her utter and complete joy when I grabbed her and threw her on my shoulders crushed me.  I’d forgotten, on some level, just how much she enjoyed being on my shoulders.  Seeing the movie, and the memories that were fading, kept hitting me over and over.

Also, were the constant positive memories they kept showing, in these little globes, from Riley’s childhood, juxtaposed with her life now, and how she was dealing with it. Those images, of the past as it was lived in contrast to the memories that Amie will never get a chance to live…more tears.


<MOVIE SPOILER ALERT!!>



But at the end of the movie, and the conclusion of the character’s growth that is central to a good story, and thus a Pixar movie*, is the idea that sadness and joy need to live together, need to find room to live and breathe and be allowed to exist in the same space, or else something is broken, and something is wrong.  That’s the goal that I’m trying to find for this summer.  I need to embrace the sadness as well as the joy.  I am supremely good at shutting off my brain, compartmentalizing my feelings, and getting the job done.  That’s what I did for the last 3 months of the school year.

But is that healthy?  Does that help me, or my family, in the long run?  I think not.  I need to find a place where I can let it all live in my heart and my head and my soul, and not be bludgeoned by it when watching a commercial for MasterCard (Just one more day, is that so wrong?!?)  That’s my goal, and I’m going to be working on it for the next few weeks as we head west.

Speaking of heading west, we’re going to take many of the donations that people gave us to “give Anya a lot of great experiences this summer”, and head out on a roadtrip across America.  We’re going to see friends, camp in National Parks, see the kitschiest parts of America, and come home in time for Anya to get to Special Days camp in August.  If you have kitschy America recommendations for us, let us know via email, or comments.  Seriously.

I’d be a total jerk if I didn’t say goodbye today to Connor before I signed off.  



Connor was a kid who had the same diagnosis as Amie, as random as that is, and in the end met the same fate.  He leaves behind a string of family grieving like us, and wondering why the hell that childhood cancer exists.  His funeral was today, in New Jersey.

He fought a good fight, he was an insanely good kid/brother, and never, ever deserved the curse that was laid upon him.  Rest peacefully Connor, you got a rough deal.

With that, I bid y’all adieu, and hope to post again in about a month when we’re in Portland visiting the Kowalewski clan.  J



*  Cars 2 sucks..  It’s ill planned, ill written, and is Disney at it’s worst:  Movies as a way to push toys and consumerism.  Granted, this is just IMHO.



Sunday, May 24, 2015

Memorial Day...

Greetings All,

I thought it might be appropriate, being Memorial Day weekend and all, to do a Memorial Day post in honor of Amie.  She might not have been in an officially declared war…but I think we can all agree that her battle with cancer qualifies her for the honorifics I might toss her way.



To start, we now have Amie’s remains with us at our home. 


Anya has been busy today arranging the area where we’re going to keep Amie’s remains until we inter her remains at Lakeside Cemetery sometime next month, after school lets out.

Shelley had created these paper doll-like creations a few years ago for the girls to color and create with, and Anya’s been busy modifying them today to be her and Amie.  It’s amazing how creative she can be, and how she so often sees beyond the limitations of what things are, to see what they can be, given time and energy and creativity.




We made a joke to someone a while back that Anya is Luna Lovegood, the character from Harry Potter who is…..a work of creativity and truly her own person.  



Each year I know Anya, I know her to be more like Luna, and more passionately her own kid.  I can think of nothing better for her to thrive through this.

As you might imagine there are a lot of things we’ve ignored over the last few years, and lots of “obligations” that have piled up, literally and metaphorically, over that time period.  One of them is paperwork.  Shelley is a saver, and a keeper, and wants to keep paper of all kinds in case we need it later.  I often see her point, but at other times disagree….not that she throws any of it away if I disagree, she just notes my disagreement and files it away anyway.  J 

Anyway, today she came across a file with all the pictures from our wedding, and how we found pictures from each year of our birth to act as table number markers on the tables at the reception (which was 50 yards away from the ceremony in her parent’s back yard!). 



So, this picture was in that pile, and was either the year 3 or year 4 placeholder.  I look at this picture, and I see Amie so much. 

When I asked my sister if she could see Amie in this picture, she said today, “Yes! It's the smirky smile. The cheeks, the look in your eye. I always said that she has your spunk.”  Our birthdays were one day apart, and I could always see a lot of my stubborn nature, my obstinacy, and my spirit in her…while I see so much of Shelley in Anya. 


I talked about Ele's Place a little bit last post, and here's the picture I took as we released balloons at the end of the 2nd to last session.  We tied messages to each of them, and let them fly.  This was easy for me (as I mentioned last post), as I had written a letter to Amie just days beforehand.



Just like Anya, Shelley is an amazing artist, and drew a little Amie on the envelope that held the letter I wrote to Amie.  (of course, I smeared the ink...)  This letter, with the hearts I taped to it, are inside the urn, with the rest of the materials we made for her.  


This picture is from yesterday, and is of Anya and Allyssa at my favorite place at MSU, the waterfall area behind Wells Hall and the MSU Administration bldg.  Allyssa was interested in checking out MSU, as she's nearing the end of her Junior year, and is starting to open up other options for college other than Ann Arbor.  I walked her through campus (and walked, and walked, and walked), and talked about what I loved and what I did not love about life in East Lansing during my 5 years there.

This picture was a great representation of what I hope other people do for Anya...they become asurrogate Amie.  They, for however many minutes as they can, step into the gap that was vacated by Amie when she died, and give Anya a best friend.  I know, in time, she'll have plenty of those...but right now...I think she's a lonely little girl, surrounded by lonely adults doing their best to provide her with all that she needs, and probably failing a little bit.  Thank you, Allyssa, for being that proxy, for however minutes you could.

I sit here, having typed and thought for the last hour or so, and realize that I’ve written a ton about Anya, some about Shelley…and almost nothing about Amie.  I wonder if that’s the best way, maybe.  We’re going to be thinking about her for the rest of our lives, but her story has ended. She’s alive in us, but not alive.  She’s a part of us, but apart from us. 

…and what does that say about us, other than the fact that our way to remember her, our way to make sure she lives on in our lives is to live.  To do.  To talk. To meet. To experience. To……everything. 

Most days, when I allow myself to think about it, I feel this gaping, sorrowful absence where she was.  I can see the seductiveness of that.  To mourn, and not allow myself to move beyond this.  But I must, and we must, and you must….  Amie was never a kid who had much patience, and wanted things to go, go, go.  She would want us to experience everything there was to experience, and not wallow in our miseries.

So, on this Memorial Day weekend, in which we’re called to remember those who have passed before us, and remember those who have given their lives for us to have the freedoms we have, I shall strive to get off my butt and do something that would have made her smile, whatever it is that I can do. 

Ride a bike, take a walk, go buy a loaf of cinnamon chip bread from Great Harvest and eat it by ripping off huge chunks with Anya and eating it with your hands…whatever I can to take huge breaths of life, and remind myself that there’s a lot more in front of me than there is behind me.  Tomorrow, that’s the challenge, and I shall do my best to meet it. 


Anyone want to join me?


Sunday, May 17, 2015

how much I miss her, and other musings...

Greetings All,

After Amie died, I said to myself that I wasn’t going to push myself to write, excepting whenever it was that I felt called to write.  This last 6 weeks has been really busy (more on that later), and also grindingly hard at times (more on that later).

So, it’s been 6 weeks since I’ve written, and that’s alright.  Why?  ‘cuz I say it is.  J

But, ya know what’s cool….there has been a consistent 200-ish page hits each day, as I know that there’s still a ton of people out there wishing us well, thinking about us, sending prayers towards us, and all other types of well-wishing.  We appreciate it, really.

What to talk about, what to talk about….  Let’s start with Anya.

Anya is really doing well, at least we think she is.  She’s where most of our focus is going right now.  We’ve been going to Ele’s Place for 5 weeks now, and it’s been amazing for her.  She loves going there, gets to talk about Amie and have fun, and we go to the adult group.

Anya’s also exploded into reading.  I’m sure I’ve mentioned it before, but prior to January she was a reluctant reader, and now she’s literally reading too much.  What’s that mean?  She avoids all her normal housework to read. She reads under her blankets after bed with a flashlight, and doesn’t want to do anything else.  She reads (on average) a book a day, or more.  She’s torn through the Magic Tree House series, the Junie B. Jones series, and the Nancy Drew and the Clue Crew books.  She’s on fire.  FIRE. FLAMES.   Ok, maybe too much for that one…  no one needs to be thinking about burning books.  But if they were on fire, Anya would still be reading them…just carefully.

Pretty much everything about Anya is going well right now.  She has swimming lessons on Monday nights (she fell behind when Amie got ill, and we didn’t follow up), Ele’s Place on Wednesday nights, and Art lessons on Thursdays.  She’s active, loving things, and hasn’t really shown a lot of acting out, other than what we perceive to be normal stuff for a soon to be 8 year old.

Shelley has taken all her stress and restlessness and applied it to our home.  All the honey-do projects that most guys might get for vacations?  Yeah, she does all of those.  Ya know the stories about husbands who purposely sandbag chores so that they can get out of doing them in the future?  Yeah. I do my absolute best at things, and they’re still not up to the skill level that Shelley has on things.  She’s never unkind about it, she just knows that she can do the things that she does much better than I, and she wants them done right.  So she does them herself.  She’s been working on re-painting trims, removing and replacing fixtures and hardware, and re-painting the bathroom thus far.  I’m sure there’s plenty to be done in the months ahead.

Me?  Work, for the most part.  My normal escape towards video games has been quite absent, as has my escape towards other geekery like Magic: The Gathering and Dungeons and Dragons.  I’ve largely been forced to live in the real world.  Utterly unacceptable.

But to be real, it got me to thinking about the idea of identity the other day, in the sense of how we see ourselves, and how the world sees us.  Underneath the surface, for me, is this seething mass of sorrow, discomfort, impatience, and aching loss.  I want to tell everyone I meet about Amie, and tell them how much I miss her.  More than that, I miss all the things that she’s not going to do, the places she’s not going to go, the experiences she’s not going to have.  I miss the hole that she has left, and know that it’s not going to be filled, just hopefully become smaller as time moves along.

I think about all the pain that sits beneath the exterior of people, and how it does with me as well.  I know that I have always judged people at times, and know that I will in the future.  I see kids with their heads down in my class, and at times take it personally.  Some times the lack of interest is from poor decisions they have made, and sometimes it’s from utter desire to succeed in school overall.  But how often in the past has their apparent disinterest been from the profound things that have been hammering into them on a daily basis, and what could I have done to help them with that?  I think about that stuff a lot these days.

Since I’m on a roll talking about things that make people uncomfortable, let’s continue!  I recently took 140 8th Graders to Washington DC.  Yes, I am insane.  But really, I love taking the trip, for what it does to the kids who “get it”.  I’ve been reading the papers they wrote this afternoon, up until I ditched them to write this blog post, and I keep getting blown away by the profound reflections that kids are writing in response to the trip.  So amazing, and so profound to see these young writers starting to discover the power of service to others, of self-sacrifice to the greater good, and how empowering it is to have passion to remake the world into a better place for others. 

But…that’s not what I meant to write (it snuck out!).  I meant to write about Grief Bombs.  That’s my name for what happens when you’re walking around in a normal conversation and you suddenly find yourself knee deep in a conversation where you’re smashing back tears like Captain America with his shield.  My most recent event with this was at the Hard Rock CafĂ© in DC, where a couple of teachers who went with me to DC were talking about vomiting, and how the girls’ bus to DC (yes, we separated them this year) had several pukers, and how we hadn’t had any the previous year.  The conversation devolved into talking more about puke, and those who cared, and those who didn’t, and I realized that I was totally and utterly missing Amie’s days of puke, because although she was puking on me as I held her, she was alive and with me.  Even typing this, wow.  Too much, too raw, so overwhelming.

The other thing that was powerful this last few weeks was settling on what to put in Amie’s urn.  Firstly, for those who didn’t know, we didn’t bury her.  We cremated her, and then we’re going to bury her.  We like to do things our own way, and this made sense to us.  (like I have to justify anything…)  Anyway, the urn we picked was an adult sized urn, and there was a lot of extra room in it.  They asked us if there was anything we wanted to put in it, and of course, we each chose things to make that happen.  Shelley knit a heart (I don’t have a pic, but wish I did), and each of us wrote letters to say goodbye to her.

I’m not sure that there’s been anything harder for me to write. Ever.  I was leaning over the table writing, and I was wearing my glasses.  I was crying so hard that I had puddles inside of the lenses of my glasses, and had to keep dumping it out to finish the letter.  But.  I guess the things that matter most, the things that most need to be said are the things that squeeze the guts out of us the most, and make us the most vulnerable.  We fear those things the most, but those are the things we need to do.  Always.  It’s the heart of what it means to be real, to be human, and to be connected to each other.


Ok.  Enough really deep stuff for now.  I could go on forever with the stuff bouncing around my head right now.  I’ll cease here, and publish this behemoth.  


I love comic books and video games.
I asked them both to pose for me.  
Charlie and Anya are epic Superheroes.


This is Jennifer.  
She's the former student who organized several fundraisers for us, and is overall just plain amazing.
She came up for dinner last week, and hung out afterwards to talk and play with Anya.


This is Anya's version of the Kitty on the yarn ball.


This is Jen's version.  Jen has 14 years on Anya.  I'm still giving the decision to Anya. ;)


The big explosion of goodness for the evening came when Jen gave Shelley this bracelet.  
She had taken Amie's signature from a piece of artwork and had it made into the bracelet.  Shelley and I were immediately overwhelmed by how insanely cool this was, and how much we both appreciated it. Jennifer For the Win! 

Hope y’all are doing well, and you’re enjoying the heck out of our spring weather.  I know I am.