Tuesday, June 10, 2014

Hoping for a good night's sleep. Missing my Ty.

Insomnia has plagued me for days, and it has to stop tonight.  Already my anxiety is kicking in over trying to calm down enough to have a good night's sleep - what a vicious cycle.

The other day we had a bunch of kids over to play with Gavin.  One inquisitive friend noticed some pictures of Ty and asked "does Gavin have a little brother?"  I have been completely and utterly floored by this question ever since.  It completely took me by surprise that Ty would be mistaken for the younger brother.  That simple question has triggered so many flashbacks of things I haven't remembered in a long time, and I can't seem to make them stop.  Really, really sad memories.

I guess enough time has passed now that as Gavin keeps growing, the reality that Ty never will becomes more and more evident.  Gavin, my baby, is now my big boy.  And Ty, the watchful big brother, is now the younger brother because he doesn't get to grow any older than 5 years, 13 days.

Oddly, I keep having flashbacks to my phone calls to Ty's teacher at Kids by the Sea (Miss Beryl) and to Sissy, his nanny who we loved so, so very much.  I don't remember how I managed to get the words out or what I said to tell them that Ty had a brain tumor, but I do remember that Miss Beryl was literally choking on her response and that Sissy...  Oh, Sissy.  I can't stop replaying her words in my head.
"Not Ty.  It can't be Ty.  Please don't let it be Ty.  Not Ty!  NO!!!"

That was the day my life changed forever and I guess I just keep going back to that place, wishing for a do-over.  I was forced to trade in my simple life to spend what felt like an entire lifetime caring for my precious boy when he was so sick.  As hard as it was, my life was entirely complete during those difficult times.  As long as I had him, I did not want. Now, in the blink of an eye, it's like I woke up to a life I don't even recognize.  I'm mom to a big boy, who's five, and who will graduate preschool on Tuesday. And all I have left of my other son is pictures. How did we get here?  Didn't I take this picture yesterday?  Where did he go?  For real, where is he?
Taken one week before diagnosis.  This kid?  Has a brain tumor? Still, even now, it seems impossible.
Running this non-profit has saved my life, but it also wears me out sometimes.  My heart has been so heavy lately, while my mind is on overdrive planning for upcoming events and new initiatives - like the locket project on PRET*TY.

I friend everyone I find in the childhood cancer community in order to maintain a community of support. On Mother's Day, I witnessed post after post after post about how difficult it is to be a bereaved mom on that day especially, and I was inspired to launch a program in the PRET*TY store that allows a stranger to sponsor a locket for a mother who lost her child. The same locket I wear for Ty. We include a photo of the child and send it to the mom with a note that bears the poem "I carry your heart" by E.E. Cummings, while the donor receives a different card with a photo of the sponsored mom, and a link to a Facebook page or blog where he or she can learn more about the family.  Today, Jen and I were working like crazy to fill a bunch of locket donations, and as I was printing the photos of children who died, and writing the stories about their families, she kept sighing audibly. She said:
"It just takes my breath away, how sad this is.  Do you feel that way, too?"
"No, I don't.  Not the same way.  I live this.  That feeling you have - needing to catch your breath - is a constant for me and all these moms.  I never thought I'd get used to it, but I guess I did."

Then, this morning, this was posted on Facebook and I know we did something good.  In honor of Riley and because of Ty.  These beautiful boys are forever in our hearts, never to be forgotten.

Yes, I am glad I got out of bed this morning and came to this office despite wanting to hide under the covers all day.  It is such a special place and it fixes me.  Magic is happening here!  In fact, every time the UPS guy comes with more packages, I feel like a kid on Christmas.  I swear, this Foundation saved my life.  You all did, with your tremendous support.  Can you believe our Wish List on Amazon is almost completed!  The Mess Fest 2014 is sure to be a HUGE success, thanks to all of the terrific people who are making Ty's dream a reality year over year.  Laura Viceroy, MaryRose Hackett, Melissa Terrazas, Kate McGrath, Donna Tine, Terri Zumato, Michelle Ott, Steven Kelly and many, many more have sent loads of supplies.  We are buried (literally) in boxes filled with your kindness :)  And they just keep coming.

In the past three weeks, the Foundation has:
  • secured a Mess Fest sponsorship from the fabulous Doctor's at TLC Pediatrics for $2,000
  • received a check for over $1,300 from Riley Damiano's Blue Lollipop Project
  • benefited from the second annual "Ty Tuesday" fundraiser in Lynbrook, that totaled more than $2,300 - what an amazing group of kids!
  • announced a generous donation from our friends at Best in Backyards who is allowing us to raffle off a Dream Swing Set valued at $2,500 (winners announced August 9)!
  • visited Mahopac Middle School and met the incredible team of young change makers who launched Muffin Mania Mondays resulting in over $2,000 in donations
  • benefited from the second annual PJ Day fundraiser at Matthew Patterson Elementary School/Carmel that raised more than $1,750 for childhood cancer research in memory of Ty and in honor of three incredible young students who are fighting the fight!
  • received a check for more than $2,500 from Sierra Lily in Poughkeepsie, who chose to donate 5% of their Mother's Day proceeds just because they are awesome
  • attended the Backdraft Motorcycle Club's 2nd annual "Ride for Ty" which raised $1,000
  • attended the first Goals 4 Gold soccer fundraiser in Pawling, that raised $1,000 and brought together a wonderful group of kids - we hope to see this initiative spread across various soccer clubs!
  • announced the "Pizza with Purpose" fundraiser set for this Friday at California Pizza Kitchen, Westbury, NY.  Long Island friends, please print the flyer below and bring it with you!  

And this is only the beginning.  Later this week I will be posting a copy of our June Newsletter that provides more details on three of our biggest upcoming events... (1) Mess Fest, (2) Frank Lloyd Wright Architecture Tour and (3) the TYathlon.  Stay tuned :)


  1. Not a day goes by Cindy when I don't think of Ty, and the amazing things you are accomplishing. I wish you a peaceful sleep tonight. Sarah xo

  2. Cindy.. I am so very sorry Ty is not here in the physical world with you. I know he is though forever.

  3. always thinking of you and the wonderful Ty!
    big hug from Barcelona, Spain

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  5. Thinking about sweet Ty and your family every day Cindy, Hugs Katie (Ireland)xx

  6. Cindy, It is an honor to wear my turquoise coil bracelet in honor of Ty every day and take advantage of every single compliment I get to tell people about your foundation and the work you are doing to help put a stop to the madness of what these kids have to endure. Keep on keeping on! With love and admiration, Rosemarie Giambrone, Buffalo, NY

  7. Cindy, you are doing such great things with your life. So sad for you and your broken heart. I hope you a good night's sleep. Have you tried a natural remedy for sleep - Lavender essential oil. Apply it to your wrists and the back of your neck, and to your pillow. You can even diffuse it next to your bedside to help keep you sleeping all night long. I'd be happy to send you a small bottle anytime. Just let me know.
    With love and admiration. Christine in NJ (mom to a Gavin)

  8. My heart does ache for you and your family. I was behind a black truck the other day and on the back window was the "TY" symbol. I told my husband that I believed it was the TY foundation. I sat there and thought of you and how Ty is still doing amazing things from his playground in the sky. Prayers always. Betty from Beacon

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  10. How did this happen?! How did you actually woke up one day to get Cancer Dx in your beautiful 2 yo?! It can only happen in a dream or so it seems. Thats what I used to think before I "knew" you and Ty. I am in a whole different world right now. I know reality and not for a second do I mean that I know how you feel because that is impossible to really know but I need you to at least know that I really care I really do think about Ty daily, few times a day, every time it rains or every time the sun shines and I get sad. I am sad that Ty is not here to experience this world but I do know that Ty wasnt just any boy. He was a special angel, he was chosen and given to you to care for. i want to believe his soul knew and prepared for that before entering this world. I want to believe that it wasnt just like that because if I don;t believe that there is no hope left. But I am so happy that you found the reason to cont to wake up and help others. Thank you from the bottom of my heart for everything that you do and for being you.

    Congrats to your handsome big boy Gavin. no matter what Ty is his big brother, and he will always be his baby Gaga. Sending love, kisses, hugs and my heart to you.