19 Years Later and the Pain is Still Raw: Memories of My Sister

I still remember that day as if it were yesterday.

She was lying in her hospital bed, her face puffy from all of the steroids she was taking to manage the pain in her body.

Tube in her mouth, needle in her arm.

The name on her hospital band read: Julie Amon.

Birthdate: 4/20/81

Julie was my 12-year-old sister and she was dying from cancer.

It was Saturday, February 26, 1994.

I was 16 … and not only was I wrapping my head around the fact that my sister was in her last moments in her body, but I was also suffering one of the biggest hangovers of my young life. I had gone out the night before to Daytona Beach to a club and proceeded to drink way too much, black out and not come home that night.

My parents had to track me down at a friend’s house. Pre-cell phone days. This wasn’t easy and they weren’t happy.

I felt terrible during the entire 2-hour drive from New Smyrna Beach to Shands Hospital in Gainesville, Fla., where my sister had been airlifted to the night before.

My entire family had congregated in the hospital to band together in our grief that the unthinkable was going to happen.

I was in a state of shock.

Denial was easier for me to deal with than the acceptance that my sister was really sick. I mean, how many other 12-year-olds do you know who get cancer and freakin’ die? I didn’t know any so in my mind that meant that she would get better.

Plus, I had been too busy living my 16-year-old life as a cheerleader, yearbook editor, top student leader and party girl to have time for something like this. It just didn’t make any sense to me.

And I didn’t really have anyone explaining it to me …

My dad lived 1000 miles away in Atlanta. This was before free long distance so we spoke about once a week. I got my “everything’s gonna be okay” gene from him. He too didn’t want to believe she was going to die.

My mom, on the other hand, had become Julie’s full-time caregiver. She took her to doctor visits, her brain surgery, radiation, and eventually chemotherapy.  She helped her get fitted for a wig and helped her identify her wish (a new bedroom set) for Make-a-Wish Foundation. She stayed with her for a week at a time at the Ronald McDonald House near the hospital during her radiation treatment that lasted many months.

During Julie’s treatment, I stayed home (by myself) and went to school and my activities. I didn’t want to “miss” anything and fall behind. That was a scary concept to me. My identity was very wrapped up in being at the top, being the best.

I did go with my mom and sister one time during her treatment (maybe it was during my Spring Break?). I remember Julie looking so brave as a hard plastic covering was put around her head as she lay down on a giant movable bed that eased her into the radiation machine that would blast radiation into the part of her brain that had the cancer.

Even now as I write about it 19 years later, it seems surreal, like this didn’t all happen. But it did. Oh, it did.

So there we are on this fucked up February day, my mom, dad, aunts and uncles and me, all congregating around Julie hospital bed while she shows us what grace looks like.

Julie told us what she wanted. When the doctors said we could do this or that procedure or give her this or that drug, she simply said: enough.

“I just want to go to sleep.”

That’s what she said.

She had been poked and prodded and drugged and tested for 13 months. Her quality of life was essentially non-existent. She couldn’t walk anymore. She always felt like she had to pee (even when she didn’t). The steroids had done a number on her face. She was having seizures. She had a hard time speaking.

She had given it her best shot.

She was ready to cross over.

We could see it.

She could see it.

She wasn’t afraid.

She was full of faith.

At that point of “no return” in the hospital, she asked for her last rites to be read (I had never heard of this ritual before).

Julie was very religious. I wasn’t.

When the priest came in the room, Julie pulled her frail body up and put her hands together and prayed.

It was one of the most beautiful and heartbreaking things I’ll ever see in my life.

At that point, she was “complete.”

For the life of me, I can’t remember what I said to her on that day, in that room, while she lay there. I wish I could. God, I wish I could.

I think I held her hand and touched her skin and petted what little hair she had remaining. I think I did this. I hope I did.

I remember watching the EKG machine with my aunt that day, watching Julie’s heart rate going up and down, up and down. When it would go too low, we’d get nervous and then Julie’s strength would take over and her heartbeat would stabilize again.

No one wanted to leave the hospital to sleep, but it was getting late and we were all exhausted.

My Aunt Karin volunteered to stay by her side while we all went to sleep.

My mom and I shared a hotel room.

We both fell asleep quickly only to be awakened by the phone ringing in the middle of the night with the news:

She was gone.

My sister had died.

My mom asked if I wanted to go back to the hospital to say goodbye, but I just couldn’t.

It hurt too much. Plus, I was still hungover from my Friday night escapade.

My little sister wasn’t coming home with us this time.

It was so weird.

With all the personal growth and therapy work I’ve done through the years you’d think I could say that it’s not weird anymore, but I can’t say that. It’s still really really weird.

But the weirdness has become an old familiar friend. I’m not weirded out by the weirdness.

Does that make sense?

So, as I write this on the 19th anniversary of Julie’s passing with tears streaming down my face, I can honestly say this:

Life is beautiful … and short … and not always “fair.”

Not a day goes by where I don’t think of her … and THANK HER for what she taught me about grace and bravery and faith.

I thank her for looking out for me and my family (we have crazy good luck).

I thank her for forgiving me for not being there for her more when she was sick.

I thank her for being my sister.

I thank her for the memories.

I thank her.

Scrapbook page with memories of Julie. My nickname for her was Totsy.

Scrapbook page with memories of Julie. My nickname for her was Totsy.

 So … if you wonder what gives me my perspective, my drive, my ambition …

If you wonder how I could drive from Florida to New York City in a U-Haul by myself as a 22-year-old college grad with only a couch to crash on when I arrived …

If you wonder how I could pull off a month-long vacation to Asia with my husband (while still employed full-time) …

If you wonder how I could quit my 6-figure corporate job in New York City without another job or a clue about what I’d do next …

If you wonder how I could want to birth my first son naturally without paid meds (I made that vision real) …

If you wonder how I could move my family from the bright lights and non-stop action of New York City to the chilled out country of Western Massachusetts …

If you wonder how I can march to the beat of my own drummer, saying no to things that zap my energy and yes to things that make me come alive …

… then perhaps this story about my beautiful sister Julie will shed some light on who I am and why I’m here.

My sister's poem she wrote during her battle with cancer.

My sister’s poem she wrote during her battle with cancer.

It took me many years to accept that I am in fact the sister who was still living and I had a purpose to fulfill. Now that I have stepped into this, I feel more at peace than I ever have.

Thought you might enjoy this poem I wrote for her a few weeks after her passing. I read it during my high school pageant (ended up winning the title of Miss New Smyrna Beach High School as a result. I still get a kick out of that):

MISS SUNSHINE

I woke up one day…not to sunshine, but to night

It seemed to be a symbol of the end of the fight.

Why did Miss Sunshine have to go away?

I don’t understand why she could not stay.

My sunshine was so beautiful with all of her rays,

She seemed perfect in every little way.

She lit up my life in more ways than one,

Oh how I adored that warm, loving sun.

My sunshine left me without a trace,

Now all I have are the tears that adorn my face.

There is no one to dry them because there is no light,

It’s so unfair that my sunshine was deprived of a long, prosperous life.

I hate myself for being afraid,

I thought from my sunshine I would not be able to break away.

I coated my soul with sunscreen and oils,

So I could be sure my heart would not be toiled.

I was scared of getting too close to the flame,

Now I know I am the one to blame.

I should have known that the only thin to fear is fear itself,

To Miss Sunshine I was of no help.

I complained because she made me sweat,

Her strength and composure I will never forget.

She refused to let the moon creep through,

She dreaded darkness like me and you.

She struggled to keep her light shinning bright,

How extremely brave she was to put up a fight.

I stuck by my sunshine till the darkness had to be,

Oh, how sad a sight it was to see.

I saw a beautiful wonder fade away,

Now the time was night and not day.

I cried and cried till my tears were dry,

And then I let out a reliving sigh.

I realized that the sun would still shine,

But it’s a different sun…definitely not mine.

It’s not as warm, true, or sweet,

But its responsibilities it will surely meet.

I woke up today and that’s good enough for me,

I did not look outside to see.

If it was dark or sunny I did not care,

Because the smile on my face was too much to bear.

I know my sunshine is smiling down on me,

So I will wear one too, for all to see.

On February 27th my sunshine earned her wings,

She is the angel that I hear sing.

I know she is in a better place,

But her warm, bright memory shall never be erased.

My sister and our cat Puff.

My sister and our cat Puff.

Thanks Julie. Miss you and love you.

And thank YOU for reading, caring and simply being there at the other end of the computer screen. I appreciate YOU and send you so much LOVE on your journey to live your absolute best life.

Go for it.

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