Back home

Our time on the West Coast was magical.  Our unending thanks to our friends for allowing us such a wonderful getaway.  The beach in San Diego was beautiful, I caught up with some of my best friends out there, I got to give a long-overdue hug to my friend Kristine who also lost her daughter to a brain tumor, and I got lots of special time with our birthday boy.  On our last day, just minutes before leaving for the airport, we were also blessed with a show from dozens of dolphins playing in the waves.  It was as if Ty was giving us one last smile before our departure. 

While we were away, I watched Gavin run back and forth in the ocean.  Memories of Ty at the beach came rushing in.  Times like this, exactly (click here for video of baby Ty at the beach).  I watched long and hard and imagined Ty, right there next to Gavin, a big boy jumping in the waves and laughing wildly :)  It even looks like those could be Ty's footprints next to Gavin in this photo.

Today I realized there is a real reason why Lou and I have been traveling so much.  My house is a very sad place for us to be.  After being gone for a week of R&R (which was long overdue and truly wonderful) I was anxious to get home.  Now that I’m here I am – once again – slapped in the face with reality.  Maybe we just need to be here and grieve, or maybe escaping is good.  I don’t know the answer.  I just know that our pain will never ever go away, but we are slowly learning to live with it and to smile again despite the grief.  Lou and I want to be happy again.  We talked tonight about how we are making a conscious decision, from today forward, to try and change our lives so we can be happier because that is what we learned from Ty.  To try and embrace and to love life again, in his honor.  To stop fighting over stupid little things.  To remember the bigger picture.  To love, love, love and love more.  Slowly, we have vowed to try our best to make this shift. 

I just realized that I always choose to listen to depressing music lately.  I should try to make a conscious effort not to do that, too.  Lou took Gavin to Nana’s house for dinner tonight and I’m here alone, supposed to be unpacking.  Instead I’m listening to Nirvana Unplugged, singing every song, as I walk from room to room in my house opening drawers and cabinets and looking at every little thing that has anything to do with Ty.  Anything he once wore, touched, played with, looked at.  Things I bought for him after he died just because he would have loved them so much (like the Robot notepad, a package of Razzles, a rainbow flashlight).  Maybe not a healthy way to be spending my evening, but probably very necessary.  It’s all part of the process, I think.  I missed having his things all around me while we were away, yet it makes me sad to be around them.  What a sad cycle this is, but it's all part of the process, I think. 

There are three places I spent the most time in tonight.  First, the kitchen pantry.  Ty’s med drawers are still in there.  They aren’t nearly as full as they used to be, but there are still so many pieces of Ty.  The nebulizer that we were provided with when we left the hospital for the last time.  Then there are the spare g-tube attachments; the mediport change kits; the nail clippers I used on his perfect little hands and feet for years.  There is a bottle of expired allergy medicine that was prescribed to him just before he was diagnosed in 2010.  I don’t know why I don’t throw it away.  I look at it all the time and think, this is a normal medication that should have Ty’s name on the bottle.  Not the morphine, the oxycodone, the cytoxin or etoposide that was soon to become part of our medicine collection. 

The folder with the contact information for his Hospice team is still there, which includes educational brochures on dying and grief.  Although I understand the good intentions, I find them insulting just because I am Ty’s mom and I still don’t want to accept that his death was a normal part of life.  All of the literature seems to be directed toward an older audience.  Information that makes sense for my mom when she was caring for Granny last year – but not for a mother and her five-year old son.  Ty’s death was unfair and unnatural.  With Granny, as much as we love and miss her, we can accept that it was “time.”  You simply can’t tell yourself that when you are filled with hope for a full life ahead despite the odds.  A future.  Ty didn’t have a chance to live before he died, and it was my job to give him that future.  I will forever regret not being able to do that.     

I stand in the pantry, I look at all of these things, and I feel like the greatest failure of all. We tried so damn hard.  We fought.  We promised Ty that he was strong and brave.  I just want him back to take care of him.  I want to change the dressing on his g-tube.  To give him a gentle bath and kiss his scars as I dry him off.  I used to love that so much.  To get him so clean and comfy.  I miss brushing his teeth and running my fingers through his hair – always keeping in mind his shunt and his never-ending stitches.  Lou was saying just this morning that he ran his fingers through Gavin’s hair and the absence of a shunt reminded him of all the unfairness Ty endured.  How he looks at pictures of baby Ty and simply can’t imagine that this perfect little baby of ours got cancer and died. 

Naturally, I was sucked right into visiting Ty’s Captain America bedroom next (the one he never slept in, but loved just the same).  I missed being there after being gone for a week.  It is pretty much a shrine to our SuperTy and all the things that made him proud.  I opened his drawers.  I thumbed through his favorite books.  I looked at his artwork from preschool and I kissed his arm and foot braces.  I laid in his bed and cried.  I put his stuffed animals to my nose, although they don’t smell like him anymore it is still comforting to know that he was one nuzzling with the same doll. 
I put a few new framed pictures of him out on his nightstand.  We took home some beautiful pictures from his memorial and I wanted to be able to see them every day.  Including this one.  Me and my boys.  I am one lucky mama. 

Then there’s Gavin’s room.  I opened his closet and stared.  We used the same closet for both Gavin and Ty since we moved here, and there are still so many doubles hanging there.  Two matching bathrobes.  Two gray blazers that they both wore last Easter.  Two Calvin Klein dress shirts and matching blue ties.  The matching Christmas tees that have a picture of a bulldog with a red Rudolf nose and antlers.  There are also the clothes that were once Ty’s, like the Spiderman hoodie that Spiderman himself gave to Ty during our Make-A-Wish trip.  The brown sweater that he always looked so handsome in.  The Spiderman t-shirt that says “it’s web slinging time” when you press a button – he loved to show that off to his teacher, Brian, at Blythedale.  He would call out, in a whisper, “Bwyy-annnn.”  I can hear his weak little voice now.  I love these clothes and I know Gavin would, too, but I don’t like to dress him in any of them.  Sometimes it’s just too hard to look at Gavin wearing those things. 

That's all for tonight.  Back to work tomorrow!  I will share updates on the foundation this week.  In the meantime, we are so grateful for the Hudson Valley Pizza Fest today, thanks for those who supported Ty's foundation at this fun event.  And thank you so much to our friends at Animal Kingdom who hosted a great PJ Day fundraiser while we were away!  So sorry we missed it.  Next weekend there is a Star Wars party at Jumpin' Jakes and a Horse Ride for Ty at Putnam County Park.  Lots of great things on the horizon, and more updates on an exclusive charitable clothing line to come!  Thank you so much for your support.