September, back-to-school and all that goes with it

This past week has been so fast, I don’t really know how much I even have the energy to share.  In between back-to-school and all the other “anniversaries” we have ahead of us, Lou and I have been in constant flux.  We are capable of passing time with friends and family, but while we smile and enjoy the company we are simultaneously toeing the line as we fight back the grief that continues to chip away at our souls.  We have immeasurable anxiety and our anger is, at times, hard to manage.  We have to remind one another that the real reason we are so angry over the literal act of Gavin’s “spilled milk” is because the nagging pain of our loss has made itself more and more known over the past few weeks.

Sadness is so physical.  Grief can be personified.  If only you could see how another person is feeling, right?  If you had that ability to see it as I walked past you on a crowded street, you wouldn’t help but notice the fact that there is a steel weight – and it’s huge – that sits on my chest.  My heart hurts all the time.  It feels like it is physically being pushed downward into my lungs and stomach.  I sigh constantly just to catch my breath.  It hurts.  And it’s not just emotional.  Loss like this is a physical pain.  I look in the mirror and I can’t believe what this past year has done to me.  I don’t know why, but it still surprises me to see how visible it is – the irreversible damage that my pain has caused.  And it does not even compare to the physical pain and fatigue I suffered from when caring for Ty.  It is so different, and so much worse. 

If I thought I was helpless then… well… now I really know what helpless is.  At least then I found comfort in knowing that my boy ate one bite of my special strawberries with sugar because I prepared them with extra love.  At least then, my stress would subside as we laid face-to-face and stared into one another’s eyes with a love so great it was almost too much to comprehend.

I only wish my arms could be so tired from the stress of carrying him around with me all day.  I actually long for the stress I used to feel whenever I noticed something wasn’t “quite right” with my Ty.  Feeling that mama bird instinct and knowing that I am more connected with this small, beautiful most perfect boy than anyone else can ever know.  It was the greatest testament of love imaginable.  I had such purpose.  I was the one chosen to protect this child.  To fix him.  It was all up to me, and I was determined to stop at nothing until he was all “bedda.”  I was empowered.

Since we lost Ty, I can only thank God for blessing me with signs.  Without them, I would be lost.  Swallowed up by the sadness and stuck in a world of grief.  Instead, I have never had more faith and clarity.  During my most vulnerable times, it is the simplest things that help me lift my head again.
I have been feeling especially sad with school around the corner.  I can’t help but look at pictures of the countless children I know who are entering the first grade and wonder what Ty would be wearing if he were right alongside them.  I smile knowing how easily he would have marched onto the school bus for the first time with confidence, but not before giving me the biggest squeeze around my neck and the softest, sweetest, mushiest kiss smack on my lips.  So I walked around my backyard with these thoughts stirring in my head, and I talked to Ty all about it.  I said, as I have said many times before, “please send me a ladybug!  It’s been a while, and I really need to see one.”  Never has it happened that I get a ladybug from Ty right at those perfect moments.  Never.  BUT – even better – I almost always see one within a day or two.  And there is always a great story that goes along with it. 

Like the day after the Mess Fest.  All day long, dozens of people at our biggest event of the year are showing me pictures and telling me about how a ladybug landed on them or on their child that day.  While it made me so happy, I couldn’t help but think “What the heck, Ty, what about me?” The very next day one landed on my leg while I was playing with Gavin outside.  Ty finds his moments to reach out to me.   I’ll never understand how it all works until I’m dead myself.  Then it will finally be clear.

So the day after I searched high and low for a ladybug in my backyard, I dropped Gavin off at Nana’s house so I could get some work done at the office for a change (he has been in between camp and school for three weeks now and I have really fallen behind).  I cleaned up the office for hours.  I was marching up and down the stairs with boxes and boxes of stuff for an eternity.  Finally I was finished, carrying out the last two garbage bags to dump on my way to the car when I got nailed in the face by a huge bug.  Right on my nose.  The bug hit me so hard I freaked out, dropped the bags, shook my head wildly and stopped in my tracks.  Of course, after I got a hold of myself I had to find the bug – you all know why.    And there she was, right at my feet.  A giant ladybug.  She was so startled, I was afraid I might have killed her.  I helped the poor girl onto my hand and watched her for over a minute as I cried a river of gratitude.  Finally it was as if she shook herself out of a trance.  I watched her shake each little leg, one by one.  Then she cleaned her little black and white face off with her two front paws, slowly spread her wings, and fluttered away back to the heavens.  

I like to imagine Ty takes over the ladybugs for a short while, and he was watching/comforting me for that minute or so until the bug regained her senses.  So silly and ridiculous, I know, but I believe in such magic and that faith is how I survive and persevere. 

Here is a text message I received yesterday from one of my very best friends who lives in San Diego.
 
“Just as my husband complained that Layla was getting all wet, and I said, “let her play, she’s having fun,” a ladybug landed on her head. 

Is it just me, or are these stories that incredible?  This is just one small example!  I could fill a book with various signs that Ty has sent to those he has touched in one way or another. 

Lou and I celebrated our eighth wedding anniversary on Tuesday.  Just like any occasion over the past year, we both offered one another a “crappy anniversary” but tried our best to make a nice night of it.  We went out to dinner in Cold Spring.  He bought me flowers with some of the greenery spray-painted blue for Ty (which was a beautiful surprise but of course had me melt into tears). We were both sad, but we spent the night alone and we reflected on all we’ve been through.  We enjoyed the peace and quiet of one another’s company.  We have our moments, like any couple, but as a whole we are stronger than ever and we feel very lucky for that.  We are generally okay and I think that’s pretty incredible.

This weekend we headed down to Long Beach to participate in the Michelle O’Neill volleyball tournament.  One of our favorite days of the year.  Michelle was a beautiful girl, local to Long Beach, who also died from a brain tumor after a very long and courageous fight.  She is so loved, and she has made such an incredible impact on this community.  She went to the same team at Sloan Kettering and was long-time friends with our most loving nurse, Mary.  Just looking at the stretch of volleyball courts that blanketed the beach brought tears to my eyes throughout the day.  The fundraiser was an outstanding success and I so admire her mother for making it such a memorable day for families year after year after year.  I can only dream that we do the same with Ty’s Mess Fest.  I left the tournament feeling rejuvenated and inspired.  If she can do it after all these years, so can I.
 
Next up, Gavin’s first day of school on Tuesday.  This will be his last year in nursery school.  I still can’t believe it.  He is getting so big!  Here he is with a sparkly St. Patty’s Day hat and butterfly wings, by day, zebra by night.  Whatever makes you happy, little man.  That’s all I can say. 

Over the past week there have been some wonderful and inspiring efforts to raise awareness in the childhood cancer community.  I am so proud of what my friends and cohorts have accomplished.  Particularly Tony Stoddard for whom I have much admiration.  People Against Childhood Cancer (PAC2) have also been a wonderful collaboration of support. 

On the Foundation side, we are beaming with pride over the efforts within our community.  Gold ribbons and gold light bulbs on the front porches and local businesses all around the area bring me to tears.  John Amos loves the SuperTy book! Eric ran the Spartan Race for Ty!  The TYathlon is in a couple of weeks - still time to register!  The shoelaces have been selling like crazy!  I can barely keep up with the PRET*TY bracelet orders (a wonderful problem to have) and DeCicco’s supermarkets are taking donations at the register for the entire month!  It is all so incredible.  Especially given the fact that I really haven’t been able to put much effort behind September efforts – I can’t thank everyone enough for making all of this happen!!!  The TLC Foundation will be bigger and better year over year.  That I am sure of.  We have a very long road ahead of us, but with such incredible, dedicated volunteers and passionate members of the community, we can’t help but reap continued success! 

Thanks, John Amos!

Donate at the register all month at DeCicco's!