Tuesday, July 9, 2013

This is the not-happy post...

This is the not-happy post, but as a disclaimer, Amie is perfectly healthy.

Back in February, we had the opportunity to do a Make-A-Wish video with Lloyd Carr and a bunch of other kids.  One of those kids was named Maddie.


Feel free to go watch it for a sec if you wouldn't mind.

Maddie is the young lady on the left with the blue bandana.

I had heard someone mention Woodhaven when they were chatting, and I approached her family to make the comment that I was also from Downriver.

(Total aside, what is it about being from Downriver that you are proud of it and want to talk to others also from there? )

Anyway, we got to chatting, and I realized that Maddie was also an 8th grader.

There's something about seeing a girl in 8th grade struggle through all of this that made her....more special in my heart.  I spent the year at McBride Middle School getting to know so many different 8th graders.  Some had virtually no problems, others had buckets.  Yet none of them had anywhere near the  set of obstacles on their plates that Maddie did.  Yet every time I talked to her she was happier than every one of my students.

In one of our last times we were in the hospital, Maddie was there as well, as her Leukemia was acting up.  We spent a little time in her room chatting and playing, and she totally doted on Amie.  She was a big sister in every way, and was really connecting with her.  Amelie wanted to go play with her more and more (in the persistent way that only a 2-year old can do), and we had to keep holding her off due to Maddie's strength.

Maddie was Amie in a lot of ways to me.  She was a girl doing her absolute best with an absolutely crappy set of circumstances and she was really happy most of the time.  Think about what it is to be an 8th grade girl in most schools?  You're judged on EVERYTHING, and there's a massive social hierarchy that has to be obeyed.  The social pressure was amazing.  When I asked Maddie about going back to school, she couldn't have been more excited.  The girl had a passion for life and friends and family and religion and....everything.

Maddie died Sunday night.

Her Leukemia took over, and through all the interventions....all the horrifically awful interventions that they tried, she was not able to get control of the disease, and she died.

The last time Amie was in the hospital for her last MRI, we came out of anesthesia and looked across the aisle, and there was Maddie.  She was miserable, in pain from her own procedure.  But she took a moment and tried to make small talk and to help Amelie get a smile on her face as she was coming out of her own procedure.  It's that kind of thing that just floors me.

I construct a really amazing little shell around us in my mind.  I know that the medulloblastoma is a ticking time bomb that could explode at any time, yet we have to plan for the best, plan for the most positive outcome.  I do a really damned good job of that most of the time.

But Amie is Maddie and Maddie is Amie.  Hot damn it's hard to keep that shell intact with something like this making it so damned REAL, so uncompartmentalizable.  I had only met her a handful of times, but what she was going through connected so much.  Seeing the normal 8th grader struggle in my classroom and then add in the nightmare of leukemia was just so much more...

So tomorrow we're going to say goodbye to her.  Her nightmare is done, the overwhelming burden of trying to stay strong in the face all of that poison in her system has ended.  She has found peace, no matter where that is.

Maddie, you were a great role model for many, and especially for me.  You wanted to take care of my daughter, even though you were in your own nightmare.  Sometimes we need to look outside of our own problems to find solutions.

I'm out of words for tonight.  I will finish in saying that I can only hope that my girls grow up to be as strong, selfless and kind as Maddie was in the few interactions that we had.  Thank you Maddie, and enjoy your hard earned rest.


This is the first post I'm writing tonight, but will be the 2nd in line, the way it archives the posts.  

This post is just a massive update about the girls and life, with lots of pictures.  Blogger just uploaded them totally out sequence, and I'm not going to spend the hour to get them back into order.  Enjoy the randomness!

Shelley and the girls love garage sales, and they scored a Hello Kitty pop up tent at a garage sale.   Who wouldn't want a bright pink princessy pop-up tent for the living room?

To Shelley's utter delight, Amie has really taken to hair bows.  She doesn't mind them at all.  It also gets people to stop calling Amie a "really cute little boy!".  I don't correct them, ever, because I don't want to end up making people feel better for the fact that they feel bad that I have a kid who was diagnosed with cancer.  It's a strange thing how much I end up doing that.

Shelley and Amie were practicing emotions.  This was the best of the lot.  :)

Anya turned 6 just about a month ago.  This was one of her presents, a matching dress for her and her baby/dolly/hippo/bunny depending on the day.

One of the major benefits of living where we do is that there is a TON of u-pick fruit places near us.  This was at DeGroots, near Pinckney...about a 15m drive.  As you might notice, there's nothing in Amie's basket.  She ate a lot.

DeGroots' also has a livestock area.  I like this picture because you can see what a put-together little girl she is.  Water boots? Check!  Sun Hat? Check!

We've been doing a lot outside together, and this was a walk we took in Fairyland.  This was also the day that I got a MASSIVE case of poison ivy.  I look happy here.  I was not happy the rest of the week.

Amie is practicing a profession I dearly hope that she never takes up.  'Nuff said.

This is "Guy" or "Turtle".  He was a gift that we received from one of Shel's brothers.  It is loud and annoying as hell and Amelie LOVES IT.  She used it daily for a few months and then grew too big for it.  I put it in the garbage.  I was done with it.

She asked about it for weeks.
She asked about it for months.
She found another of them at a garage sale!

Turtle is now a fixture in our living room.

This was Anya and I playing around with pictures in Onekama, MI on one of our camping trips.

Amie likes to "dig holes" and then "put Daddy in hole".  She loves this game.  I do not however enjoy getting sand in every orifice, but I do so to make her happy.  Is that not what being a Dad is all about?

Watching the "Sun go to bed" in Manistee.  We've been doing everything we can to spend a ton of time with each other this summer.  Shel and I are both off work, and it looks like she's going to go back to work at the end of the summer, assuming everything goes the way I hope it does.

This is a terribly blurry picture, but it's the only one I've captured with Amie wearing her high heels, or as we like to call it, practicing her balance.  She's such a gender balanced kid.  She wears pink and high heels, but she loves her "diggers", kicks a ball like a banshee, and is really physically aggressive in her play.  I love it!

Ask Anya what the best time about Aloha State Park was? Mayflies (fish flies).  She loved them!  She was constantly playing with them.  My parents had taught her how to pick them up without hurting them (Luna Pier gets a plague-worth each year).

We really enjoyed the Mystery Spot in the UP.  It was silly and fun and totally worth the money.  TOTALLY.  Of course, we are weird.

This is the bike that Diane (Shelley's former supervisor) gave to us.  Anya loves it!

More to come in the weeks ahead.  As I said, I wasn't going to do regular blog updates unless there was something to report, but there's people following Amie's adventures who are not on FB, so I'm trying to do updates once a month if I can.

More camping starts......soon.