Sunday, September 8, 2013

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!


  1. Thank you for the update. Happy "crappy" anniversary to you and Lou. So glad Ty sent you a ladybug. He is always with you in everything you do. Keep sighing to catch your breath, cry to get through the hard times, and smile when you are feeling ok. Do whatever you need to to make it through. You are an amazing inspriration for us all. Hugs to you.

  2. Cindy - I found your blog through facebook and often find myself checking in on how you and your family are holding up. Something about your Ty's beautiful soul pulled me in and he left a mark on me without me ever meeting him or you. I just had to share this with you.... As I am reading this blog entry, I was thinking of my own twin boys, new 1st graders and how heart breaking this time of year must be for you. Right as this thought crossed my mind one of my boys came up to me, completely unaware of your story, said "look a lady bug on the window". Your Ty and your familys love for him is felt all the way in my home in MA.
    You are an amazing woman - I just ran a race in Wrentham MA 2 weeks ago for childhood cancer. Of course thought of your boy and happy the money was going to such a great cause.

  3. Happy "crappy" Anniversary to you and Lou. As always your posts bring me to tears one minute - leaves me
    smiling or laughing another...all I can do or say is I am forever sorry - Ill never forget Ty - ill do all I can to help keep his memory alive. Thank you for sharing such great pics of Gavin - he is a character that one and I love it. So many great things are going on and things will get bigger and better every year - I'm sure of it. Love seeing John Amos with the book. Wish a publisher would pick it up - I read it to Christopher almost every night - we pretend to catch raindrops together - he can't wait until I get to that page :). Thank you for helping me to be a better mom. RIP SuperTy - thanks for sending your mommy some signs. Love - Donna T

  4. Please forgive me if I've missed you talking about this already, but I saw the Project Ladybug foundation on television the other day and thought of you Have you heard of this? More ladybugs out there!

  5. Love the picture of Layla, lol. I also love the picture of gavin. Butterfly by day zebra by nignt. Love you, my friend. I'm always thinking about you guys. Kelly

  6. I love that Ty sends you signs when you need it the most. His spirit lives on and always will! So pleased to see all the great things being done in honor of TLC. Brings purpose in a bittersweet kind of way. Ty touched so many of us and continues to do so.


  7. Phoebe Fair´s mom...please pray...

    8 Circle

    Posted on September 8, 2013 by Amey FairStandard

    My little “bright, illuminated light” grows dim. It is almost imperceptible and then suddenly I realize that she is different. She doesn’t eat anymore, a bite of ice cream and then it melts in the bowl, or she carries a popsicle around until she decides against eating it. Suddenly- no need to stock her beloved pistachios- “stachios”, her tortilla chips or Cheerios. And she into a faraway place at times and I can’t call her back with my voice. Only my touch brings her back to me. Could be small seizures says Jan, our hospice nurse, but maybe not. She has a more difficult time completing sentences and loses her train of thought. And today:

    Phoebe: “Mommy, know who slept with me last night?”
    Me: “Yes, Grammy slept with you last night.”
    Phoebe: “No, Jesus slept with me last night.”
    Me: “Jesus slept with you?”
    Phoebe: “Yes, God.”

    She makes comments like this more and more and I wonder how thin the veil is becoming.

    You know, when a light flickers just before it goes out? This is that. She has these moments of breakthrough clarity and tells me amazing things. And then she grows dim again. She speaks less, shuffles. She fell yesterday. And somehow I can get up and brush my teeth. Sufficient grace. Calm before the storm. I try to brace myself for what’s coming, ready myself for impact.

    I have scrubbed this house from floor to ceiling, and there are 5 new bulging trash bags worth of stuff at Goodwill. I am nesting in reverse. Planning for the days I can’t get out of bed and face the world, when the sun is too bright and the birdsong outside my window doesn’t match the ache I feel inside. I am not unaware that those days wait for me. I have been there before, but this will far surpass those depths.

    Jesus is in the depths. I know He is. I will find Him there, partake in His sufferings. There will be new insight. Hard earned.

    I find myself needing to protect the time we have with her. The time for sharing is ending and the time for staying close is here. My mother love will orbit her, do what more I can do for her. I imagine it will be like in those first days, in our bedroom in Mexico, when the night breeze blew the leaves of the Jacaranda tree on our patio and in through our window where I nursed at 2 am and 4 am. By moonlight I stroked her head and marveled that at last I had a daughter.

    In my mind I imagine a peaceful transition. I know it often isn’t so. Please pray for peace for Phoebe. God is already so obviously present with her and that comforts me to no end.



  8. So happy Ty sent you a "happy anniversary" lady bug! Hope Gavin has a great year in school!

  9. Hi Cindy,
    I believe the butterflies are a beautiful sign from Ty because that is what you ask him to send to you :) I have had things happen to me that are so coincidental that I have to call my closest friend because it is just TOO cool and bizarre.
    I have thought about you guys a lot recently because I can't imagine this time for you. Please know we all think about your family all of the time. We won't forget anything about sweet Ty ever. I talk to my sister and good friends that follow your blog. TY is so ever present to us because of everything you do in honor of him. Super Woman. Super Mom. Yes, Super Mom Cindy :) Love, Emily and Friends of Ty

  10. I asked my hubby for a pret Ty bracelet for my upcoming birthday. Hope I get it :) thinking of you all, love you Cindy!
    Xoxoxo Rita

  11. Cindy,I had the pleasure of talking with you outside the post office a couple of months ago. You were kind enough to listen to the problems my young daughter is experiencing. The day before school started she was having a very hard tome, and I was wound up tight. We were in the car talking about how we hoped things would work out and she said "mom there is a lady bug on my window!" And I just knew...her first day would be good...and it was, even better than good! A true sign, a gift from one child to one mother to another, my thoughts are with you...

  12. Dear Cindy, as I was walking my kids to their 1st day of school I coldn't help but think about Ty. I was sad about Ty. I was said that all our kids are so spoiled with stuff and they don't know how to appreciate simple moments like laying and staring into each other eyes with love, the moments so beautiful as you described you had with Ty. I am working so hard to change that with my kids. I want them to be aware of whats important in life. I hope I will make any difference because there are kids who need our love and attention even more. Your baby boy is laways on my mind. Thank you for letting me love him so much even though I never met him. And Gavin is just the funniest soul ever. He makes me smile everytime :))

  13. Dear Cindy...I love all your lady bug stories and so glad that you have that special connection to your baby boy. What a special kid he is to bring so many people together. My husband was very close with the O'neill family and glad they are keeping her memory alive. I'm sure many years from now we will all still be hearing Ty's name. My facebook is gold for September and I hope this dream becomes a reality. Give Gavin a hug from Long Island and tell him to have a great school yr. Sending hugs your way...xoxo

  14. Hello,

    Many thanks for continuing to share " SuperTy's " courageous and heartbreaking journey. " SuperTy " will always remain my hero.

    All the best,

    Rob Swan

  15. Michelle's day is a favorite amongst those of LBNY, whether they knew her personally or not. Her spirit has the power to impact even those who never laid eyes on her but knows her sense of humor and unquestionable lust for life. Her commitment to children affected by cancer has been the driving force and soul of her foundation. I feel like somehow she and Ty were watching over us on the beach that day and were likely up to their own fun - and hopefully beaming with pride at how many people are supporting those who are working so hard to fight the evils of cancer in whatever capacity. Now at it's 17th annual event, she smiles her sunshine on everyone present and I know that Ty's foundation will yield the same success in the years to come. It was so great to meet you & Gavin and see Lou, if only for a moment. You and your family are always in my thoughts. Sending big hugs to you all in these difficult days.

  16. God Bless you.I know life is hard.You are doing some amazing things!Be easy on yourself(easier said than done)You are bringing changes into this world, Ty is still bringing in changes.
    Thank you for sharing <3
    Together we will cross that river!No more cancer! no more ever!