Wednesday

Unhappy Crapiversary

According to Wikipedia, an anniversary is a day that commemorates and/or celebrates a past event that occurred on the same day of the year as the initial event.  We usually think of anniversaries as a happy event, such as wedding anniversaries or first date anniversaries.  We can have an anniversary celebrating when we started a new job or quit smoking.

Of course, there are anniversaries that commemorate sad or tragic events such as 9/11, or in our case, the death of our six-year-old son.

On Friday, 6/10, it will be one year since our darling son left us.  But I refuse to call it an "anniversary," because I am one of those who think anniversaries are a time to celebrate.  For example, Hubby and I will celebrate our 10-year wedding anniversary on June 15th.  I see nothing to celebrate about the fact that we no longer have our son in our lives, that we need to look at pictures of him rather than hug him, watch the few videos that we made of him, rather than listen to his infectious giggle in person, or lament how he spent his last days of life rather than revel in the successes of his future.

A high school friend of mine, who survived a tragedy of her own, dubbed Joey's terrible day as a "crapiversary," and the name resonated with me.  I think it fits perfectly.  Because what a crappy day it was...

Although the day my son died was not actually the worst day of my life - that honor goes to the day I learned he would die - I have played that day over and over in my mind.  Those last moments are burned into my brain, and I visit them frequently because to forget them would be like denying the life he led, the fight he fought, and the dignity with which we let him die.

We had battled the brain cancer for almost 14 months.  We completed 6 weeks of radiation, during which time our incredible five-year-old complained not once. We endured 12 months of chemotherapy, during which time, Joey did not argue with us once.  We sat through about a dozen MRI's, during which our child did not cry.  We took three trips to Florida even though it was difficult and scary to travel with a terminally ill child and his three brothers.  We traveled to Minneapolis for a concert, even though Joey threw up in the middle of it, and we had to leave.  Hubby sat evening after evening scouring the internet for research that would show him a cure for what type of tumor our son had, spent months corresponding with hospitals around the country, sending his films to top doctors, trying to find someone who could give our son quality of life, making decisions that would affect his treatment.  We spent many tearful evenings discussing our options until we could discuss no more.  I spent evening after evening laying with Joey, drinking every aspect of him in from the way he looked to the way he talked and moved.  We decided to forgo experimental treatments in order to maintain some quality of life for Joey and spare the rest of us some pain.  And Hubby and I spent many evenings not talking at all until our relationship emerged thin and fragile, but not broken.

We had some idea of how the end would come.  Research told us that children with Joey's type of tumor live only nine to thirty-six months, that they could become blind, paralyzed, unable to speak, eat, talk or move.  I continuously ran these scenarios over and over in my mind.  I was trying to picture it, to prepare myself for the days ahead.  The days that were the beginning of the end.

But those days never came.  Instead, it was like Joey just faded away, which in the end, was the best scenario for everyone.  In the end, he didn't want to speak much, or eat much, or move much, but he could, and he did.  We had a hospital bed delivered to our house, which sat unused in our front room for weeks.  I knew that once Joey got in that bed, he would never get out.  So every night, as hard as it was, I helped him upstairs to his own bed.

Until one night neither of us could do it anymore...

Hubby called Hospice the next day, and two lovely nurses came to help us say good-bye to our son.  Hubby fed him a last meal of strawberry ice cream, and I refused to leave his side.  Once he closed his eyes to sleep, he never opened them again.  I spent the next twelve hours laying next to him in that hospital bed, stroking his cheeks, fat from the steroids, running the tip of my finger along his beautiful long, blond eyelashes, which were one of the first things I noticed about him after his birth, kissing his plump lips.  I stayed there, singing to him and talking to him, all while taking updates from the nurse about his declining oxygen saturation and noting the length of time he was taking between breaths.

Sometime, around 4:40 a.m., he stopped taking so many breaths.  It was agonizing to watch.  His dad and I told him to let go, to go and meet his grandpa, Hubby's dad, who was waiting for him in Heaven.  I thought every halting breath was his last.  I felt like I watched him die four or five times, until there just wasn't another breath.  At 4:44, my heart broke wide open, and I sobbed from the depths of my soul.  Hubby lay over the top of me laying over the top of Joey and cried, too, repeating, "I'm so sorry, I'm so sorry."  I kissed my son and touched his cheeks until they became cold, and then staggered up to my bed, not wanting to see the mortuary workers take his body away.

What's to celebrate about a day like that?

I had a birthday recently, and Hubby, being so great about always making birthdays special for me, kept asking me what I wanted or wanted to do.  He threw me an amazing surprise party last year for my 40th, but this year, feeling sad about Joey and big and pregnant with Baby #5, I couldn't seem to muster up any enthusiasm.

So I asked for a Joey party.

We are getting our families together for lunch, to celebrate Joey's life. 



To tell funny Joey stories and laugh at crazy Joey pictures and to say how Joey has inspired us to be better people.  To talk about how much energy and enthusiasm he had for life, how he would laugh all the time and was willing to try just about anything.  How he loved school and his family, and how he was the best big brother any little kid could ask for.  How he was precocious and just seemed to understand things.  How he was a great son and a wonderful helper.  How he loved the Earth and wanted to grow up to be a veterinarian.

And how maybe, we could all stand to have a little more of qualities like that.

After all, I think that is what I would rather celebrate every year.  Not the crappy stuff - the death he died- but the funny, crazy, energetic, smart, loving stuff - the life he led.   Wouldn't you? 
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