"In This Arduous Battle Because No Fight Is More Worthwhile"...For Amelia

When you read the title of this, or when you saw it on the t-shirt, you probably assumed some 19th century poet or philosopher published it in some book.  You would be wrong.  It was the words of a 24 year old dying girl.  Not only did she give us that nice little quote, she lived it as well. 

It took me many years to finally admit to myself that Amelia is the person most like me in this world.  You see, Amelia and myself fought like a cat and a dog growing up.  We used to argue about the most ridiculous stuff.  Part of our problem was that we have the famous Parenza trait of "telling it like it is," which naturally leads to some tempers being set off.  So with all that in mind, it really struck a chord with me when I peeled back all the layers of nonsense to realize, "Hmmm... she thinks and acts just like me!"  

We are both on more of the "alternative" side of things, which I guess may mean we could be a tad "weird" at times.  I'm willing to bet money that most people never heard Amelia say more than a few words at a time.  She was the queen of the one-word answers.  Which I always felt for her because I am so shy too, and it always felt like we were the only two people who were shy, in a world full of loud-mouths.  I never really found it out until much later, but Amelia was hilarious when she was truly comfortable.  (Example)  Her one-word answers turned into one-liners!  Through it all though, the thing that most bonded us together is that we shared: the same memories and experiences. 

The most vivid memories involve us rallying together as a family to try and keep it together.  Our baby brother Joey is autistic, and autistic children are quite the handful.  We love him so much, but it was so hard at times.  From a child's eyes, the only person who truly understands what I went through was Amelia.  She was right there with me growing up as well.  People can sympathize, but in the end it was our family who had to do it.  This is not a knock on Joey in any way, in fact a lot of good came out of it.  He taught us a great many things along the way.  Like mainly, taking care of your loved ones at all costs.  Most people don't truly learn this until they have children, we learned it as children. 

When I look back at fond memories one of the oldest involves us playing with toys as young children.  We had this game that I think we called "War".  I would line up all my Teenage Mutant Ninja Turtle and Batman toys.  She would line up all her My Little Ponies and Barbies, and we would have them "fight" each other one on one, last team standing.  If we fought ten times, naturally I would win nine because seriously could a Barbie beat Batman?  I don't think so.  I would feel bad for her and tell her that one of hers had won, so I didn't have a clean sweep.  She was a good sport, God bless her. 

A few years after that, another story we laughed at for years was the "orange" incident.  We were supposed to be eating lunch, and for some reason it was just the two of us at the table.  Amelia was making faces at me or doing something to make me mad from across the table.  I told her if she didn't knock it off, I was going to throw an orange at her.  "No you won't!"  she said.  So I reached into the fruit bowl in the middle of the table and grabbed the orange.  In mid-throw I had a guilty conscience, and made sure that the throw wasn't a "Dumb and Dumber-style" snowball to the face.  It bounced off her shoulder, and we fell to the floor laughing.

A much more recent memory that we laughed at a lot involved my little girl Mya.  Mya was at the stage where she liked to know everyone's name, and she would then try to say it.  Well she had been practicing at my parents' house, and we were sitting around and Mya pointed at me and said, "Dada".  Followed by "Mama", "Nana" (Grandma), "Mia" (Amelia), then hesitated, looked at my dad and yelled, "JOE!"  We laughed so hard we scared Mya, but Amelia would always say how funny it was, and a memory I'll treasure for ever. 

Speaking of Mya, Amelia absolutely adored her, and I couldn't be more proud.  Amelia didn't have much patience for small children, but Mya was her little sweetie.  It breaks my heart she won't be there to watch Mya grow up.  But it does comfort me to an extent to know that the last thing Amelia ever told Mya was that she loved her. 

When I found out about the cancer being back, I had all these ideas about doing some giant gestures for her to lift her spirits.  Some were far-fetched, but one was a trip to Hawaii.  She thought it sounded great, and we were all booked up to go.  Unfortunately, she took a turn for the worst, and we were unable to go.  I felt horrible because I wanted to give her this giant gift of a trip.  But when we went to see her in the hospital, little Mya was being extra cute, and Amelia was smiling getting a big kick out of her.  My mom later told me, the only time she ever saw her smile the last month of her life was when Mya was around.

That news really resonated with me.  Maybe I didn't need a grand gesture of love to make her happy.  Maybe, I just needed to be there with my family, and that's all she truly needed?  I hope that was the case, and I hope I was there visiting enough, saying or doing the right things, and I made some sort of positive impact.  She endured so much, and deserved any happiness that she could get. 

In the movie the "Bucket List", Morgan Freeman's character is sick, but thinks that if he finds out how long he has to live, that it will be liberating.  He comes to find out that it's not.  It's almost soul-crushing. 

I've thought about that particular scene a lot because obviously Amelia had to deal with this.  Hopefully most of us will never have to face such an obstacle.  And if we do, I can almost assure you that no one will do it with the strength that Amelia did. 

I can tell you with no exaggeration that Amelia never complained once; not to me or anyone else.  She was a true warrior, that looked death in the eyes many times, and never blinked.  She was the toughest person that I have ever or will ever know. 

In closing I will leave you with this.  Amelia's "About Me" on Facebook says "Complexity Personified".  Anyone who knew her, knew that this couldn't be more true.  A perfect example of this is the fact that she loved music like Enya, Celtic, movie scores, real serene, peaceful music.  However she also liked Metallica, so go figure.  I have a lot of songs that make me think of her, but none more so than "Earthless".  Please watch the video, (the lyrics are below too) the song is just too perfect for her and her situation. 


Bye Bye Sissy

Lyrics -

I know this girl
As pretty as can be
The sign of an Aquarius
She was born on the 18th
UFOs, snakes and spiders
Give her the creeps
And she's got a half life, a half smile
And lives in semi luxury
Questions God, drugs and bullets
And the high school beauty queen
And she's courageous but scared to death
But that's what courage means

She's looking for some courage
She feels faithless, she feels earthless
She wants to run
She's strugglin' for purpose
I tell her hang in you know it's worth it
You've just begun
You've just begun

Her bedroom is her temple
The books and the stereo her muse
She feels humbled by this equation
And sets fire to all her shoes
Not because of Henry Miller
She's just not leaving anytime soon
And as the smoke pours out her window
An image forms behind the moon
And it looks like the face of Jesus
But if it's Jesus she needs proof
At the heart of the matter, and a matter of fact
The science of matter
She hopes that it's true

She's looking for some courage
She feels faithless, she feels earthless
She wants to run
She's strugglin' for purpose
I tell her hang in you know it's worth it
You've just begun
You've just begun
And you've just begun