Remembering the ride home

You know that the car is the place where I breakdown the most often.  When Ty was first diagnosed, it was a place I could go alone and scream my face off while driving around.  "LEAVE HIM ALONE!" I would yell, "WHY?" I would scream, "NO! NO! NO! NOT TY?!?!?"

Over time, I got used to the fact that Ty had cancer.  As awful, painful, scary and unpredictable it all was, there was still a routine to it.  A very messed up, should never have to be this way routine that involved weekly and daily trips to the hospital, extended stays, emergency trips to urgent care, needle after needle after needle.  Procedure after procedure after procedure.  Setback after setback after setback.  But it was our life.  Our new normal.  Throughout all of this, the car transitioned from a place of solace for me to vent, to a place where Ty and I would spend some of our most treasured time together.  Just me and him and the open road.  I would often reach behind me and hold his warm little foot because he always had socks or slippers on - no shoes due to his inability to walk anyway.  He always joked that a bear was chasing us.  We played "I spy" all the time and sang songs together.  We were so in love and so connected we might as well have been sharing the same body.

It makes sense that the car has again become my lonely place to cry.  How can I drive these roads without looking for Ty in my rear view mirror?  Hearing the radio instead of his Max and Ruby DVDs.  I still don't understand how this happened.  We were supposed to beat this.  We were in this together, a team, and here I am left to live this life without the love of my life.

Last night I made a trip to the supermarket while Lou was putting Gavin to bed.  I hate it there because it was Ty's favorite place so I was already feeling lonely.  On my car ride home Natalie Merchant came over the radio.  "These are the days, to remember...."  I started crying, of course.  Thinking about how these SHOULD be the days.  How I used to be a young, smiling person who happily sang this song at the top of my lungs.   The best days of my life should be watching my small boys discovering new things, playing together and loving life.  Watching them grow up together.  Instead I am left watching Gavin, at what should be the most FUN AGE, and I can barely see through the cloud over my eyes, my smile is so often forced because my head is swimming with uncontrollable thoughts of what is missing instead of what is happening right in front of me.  I can't get past it.  When I watch Gavin go into hysterical laughter over something totally silly and ridiculous, the first thing I wonder is if Ty would have thought it was funny, too.  When I see Gavin trying to draw a circle and learn the letters in his name, I  recall how Ty struggled to draw after all of his setbacks, but never stopped trying.  They will forever be connected and I know that, but missing Ty like this - carrying the weight of this loss on my chest every second of every day -  makes it hard to feel better about anything.

"These days you might feel a shaft of light make its way across your face.
And when you do you'll know how it was meant to be.
See the signs and know their meaning.
It's true, you'll know how it was meant to be.
Hear the signs and know they're speaking to you, to you."

It was a fitting ending to the song, especially given the fact that I was having a breakdown while listening to it.  I was completely giving in to the depression when these words reminded me that Ty has shown me he is okay, and I have seen the amazing things he can and will continue to do.  A few minutes later I snapped out of it by reminding myself how I truly am blessed and lucky.  That I got to be his mom even for five short years is the greatest blessing I could dream of.

This morning, again I found myself alone in the car during a long familiar drive into Westchester for a meeting. I couldn't stop thinking of our very last day in the hospital during the entire drive.  I was reliving the day we left to bring him home, knowing he was going to die there (but hoping and praying that by some miracle, he wouldn't).

He couldn't sit up in his car seat because he was having so much trouble swallowing his secretions.  He needed to be laying down so he could let them drain out of his mouth if necessary, instead of down his throat.  Lou and I were never going to call for an ambulance ride - enough was enough.  Instead, I sat in the back seat and cradled him the entire way home.  I realize how dangerous this is should we have gotten in an accident - but when you're taking your child home to die, none of that really matters.  It breaks my heart to see how swollen he was from being so sick and receiving so many fluids at the hospital.  To remember our sweet nurse taking off his bandages and "freeing him" from his needles for the last time.  I can still feel him in my arms.  I must have gently kissed the skin on that cheek, those lips, every single second during that car ride home.  If I wasn't kissing him, I was running my fingers through his hair ever so softly.  Brushing it out of his eyes.  Whispering "I love you so much!" the entire way.

I couldn't allow him to hear me sobbing, and I didn't want to shake and choke if I allowed myself to cry either because he was resting so nicely.  But there was no way of stopping the water from silently pouring out of my eyes.  It looked like I spilled a glass of water down both sides of my shirt.  Looking at this picture I took of him, I still can't believe that it came to this.  That all of this really happened.  I really can't.

In going back to read what I wrote before posting, I am realizing how heavy this all sounds.  And it is.  Heavy is an understatement.  So, before I sign off for the night let me leave you with this fun photo of Gavin to lighten it up just a little.  We went to a birthday party on Sunday, and he fell asleep with a lollipop in his mouth on the way home.  Ty would have been proud :)  Also, I posted a recent fortune cookie finding on Ty's Facebook yesterday.  "The greatest lever for change is awareness."  That's why I continue to write.  That's why I will always ask you to share his story.  Thanks for that undeniable and most appropriate message, Ty :)  XOXO.