Saturday, October 18, 2014

4th Birthday... looking back and forward

Today is Amie’s Birthday, and we spent most of the day at Cranbrook Science Museum.  (More on that later).  During one point in the day when the girls were doing a craft, I took a moment to read the last two blog posts from Amie’s birthdays.  Wow.

Sometimes the blog, for me, is a way to shield Shelley from the burdens of updating the incredibly well-intentioned people who want to know about how Amie is doing.  Other times, the blog is a way for me to show off defeats, successes, minor miracles, or plain failures.  These are all successful blog posts for a variety of reasons.

However, there are times when I use this platform as a means to dump out the contents of my head, and use it as a cathartic experience, no matter how much it might not make others feel well.  Last year’s post was one such post.

I read it, and immediately started crying, standing in Cranbrook.  It was such a raw, visceral piece of writing that was a testimony to how much pain I was in last year at this time.  Hell…for most of the last year.

Anyway, I also read the post from two years ago, and it made me smile.  I was holding onto so much hope, and humor, and excitement, and love for this tiny creature.  I was bubbling over with the idea that this (unwanted) journey might not be a derailment of the train of our plans and hopes and dreams…and just a pitstop.  

I think I’m in a better place now, with the theoretical upswing of Amie’s prognosis.  But I still don’t have a place to put those feelings, to trust those feelings. I have them.  I am protecting them, but they’re still just in my pocket, and not in any sort of formal mental architecture.  

So that leaves me with a third birthday post for Amelie, and I guess also for me, because my birthday starts in 3 hours and 38 minutes.  We’re bound together that way.

I just walked out of the movie “Fury”, a WWII tank movie starring Brad Pitt, Jon Bernthal, Logan Lerman, Michael Peña and Shia LeBouf.  It was not a normal war movie, nor was it a normal abnormal war movie.  It was…..unsure of itself at times.  I can say this because I’ve watched a lot of war movies with my Dad.  A lot.  For a while during HS, especially when he was working afternoons and would get home around midnight, WWII war movies would frequently be on TV and we’d watch The Dirty Dozen (which always seemed to be on), or some other war movie.  

Fury was typical in telling the story of the sage older soldier (Pitt), and the new recruit (Lerman), as the older soldier both tries to protect the innocence of the new recruit, while also getting him ready for the necessities of war. There were periods in the movie that were quiet, and contemplative, and made me think to our journey with cancer.  Times where my faith in things, where holding onto my positivity has been thoroughly shaken.  But there are also times where people have stepped up for my family, out of the blue, and made things happen for us that would truly have never been possible.  Times where my faith in humanity is filled to bursting.

Here’s what I know for sure:
  • No matter what happens to Amie in the years ahead, I am truly amazed and proud at the kid she is becoming.  She is a kind hearted kid who loves the living hell out of her sister, and constantly surprises me at her overt kindness towards others.
  • Anya is a kid who has levels of strength and courage far beyond what can be expected for a 7-year old.  She is the secondary victim in all of this, and the one who gets the shaft the most often.  We do everything we can for her, but there are just times we can’t shield her from the realities of what is going on with our family, and with her best friend.
  • Shelley and I have developed skills upon skills to deal with this journey.  I like using the idea of it being a journey, because there is no defined destination.  We can’t say for sure that she will defeat this, nor is there any real way to ever say so.  The treatments for her illness are nearly as toxic as the illness itself.  Are we trading years for years here?  Yes.  We acknowledge that.  But the years we’re getting now are ones that we are savoring deeply, taking breaths and living in the moment as much as we can possibly do. 

Over and over, people surprise us through the power of their dedication towards my family.  Tomorrow morning is a perfect example.  We’re going down to Detroit to watch a former student run the Detroit Free Press Marathon, and doing it as a means to celebrate her own personal journey towards health, as a mirror to Amelie.  

A former student who I had on my very first day of teaching (ever), and had me as a teacher almost a decade ago.  I have no words to speak to that kind of generosity and passion for my daughter.  None.

Back to today:  Cranbrook Museum of Science closes a few times a year, and opens their doors to an organization called Kids Kicking Cancer.  We had the opportunity to go there last spring (the weather was virtually the same both days), and enjoyed the heck out of it both times.  

They clean the place from top to bottom to ensure lack of infection risk to cancer kids whose immune systems are shot.  They have all types of crafts, experiments, treats, and fun things for the kids.  

The person who coordinates the event had figured out that it was going to be Amie’s birthday on the day of the event, and communicated that with the director of the Museum, Mr. Stafford.  He shared with us the story of how the events started, and arranged for a special gift for both girls.  In talking to him, he shared with us his son’s journey through Leukemia, and then later on his own diagnosis of the same.  It…  made the whole day that much more personal, knowing that the people who were providing the day for us understood how big of a deal it was, and knew that normal is something we’re always chasing, and often failing to find.

We got home tonight, Shelley made Apple Crisp for Amie (by special request), and we did the birthday thing again tonight, after last week's pre-birthday.

Opened presents, and Anya got to show Amie her special card and gift she made (no picture of Anya's gift.  It was amazing.  Next time)

So.  Another birthday post draws to a close, and another year stretches out before us.  I have no idea what this year will bring, but I know that we’re equipped to deal with it, whatever it is.  Let’s just hope that most of the stops on this journey bring us a modicum of peace and comfort wherever possible.  As Jean Luc Picard might say, “Make it so.”