Every night during prayers, we ask Gavin to tell Ty something about his day. After the fireworks this weekend (which absolutely TERRIFIED Gavin) he said “Ty, don’t ever go to watch fireworks in heaven. Because they are sooo scary and you might die. I mean, die again. And then you would have to go to Chinese Heaven! Or, heaven in China.”
|Ty and his friend at the parade in Long Beach 2009|
If there is one thing I am most grateful for since my son’s cancer diagnosis (aside from the time I had with my son), it is the people who have entered my life and fallen in love with Ty and our family as a result of following through his journey. Strangers who have become lifelong friends and family. Kristi, Kathleen, Donna, Mellissa, Tonya, Diana, Audra, Kristine, Ali, Jennifer, Dana, Susan, and many more – not to mention those from email and Facebook that I have yet to meet in person but with whom I feel I’ve shared a lifetime. I believe every person who I have connected with so deeply has an inexplicable connection with Ty and we were meant to find each other.
Mely is certainly one of them. Ty had his very first surgery in September 2010, and after three weeks fighting post-op meningitis, his first chemo in October. Then his first brain bleed. Then another infection and so on. By mid-November Ty was still in the hospital and poor Gavin, who was 18 months old at the time, had been passed around like a hot potato – from my sister’s house, to Lou’s sister’s house, to Grandma’s house, to Nana’s house, etc. We were just beginning to realize how life changing this diagnosis would be (truly), not just due to the fear of an unknown future for our son, but because of how unpredictable life became with every passing day. From that day forward, Ty’s illness would dictate and ultimately define our every-day lives. We needed someone to live with us who could care for Gavin through all of our emergency trips to the hospital and long stays away from home.
We were desperate. We learned about a 21-year-old girl who had been working as an au-pair on Long Island for a couple of months, but she was very unhappy. She was also desperate, because if she didn’t find another host family to live with she would have to return home to Bosnia. We made contact, invited her to take the train into Sloan Kettering and to meet with us in a small kitchen area on the 9th floor of the hospital (the most depressing place in the world). She looked sweet enough and we knew that it takes a special person to be willing to live with a family like ours knowing just how hard it would be. We said yes, she said yes, and the next thing you know she arrived at our front door at our new house in Pawling a few days later (we hadn’t even unpacked yet). That was the first time she met Ty and Gavin and she was also greeted by my parents, Lou’s parents, our sisters, brothers, nieces and nephews. It’s a miracle she didn’t run away screaming!
|Mely caring for Ty. So special.|
I have always been in awe of Mely. I think about what I was doing when I was 21 (how self-absorbed and immature I was) and I can’t help but admire her strength and ambition. I took the summer off after graduating college and I remember my mom rolling her eyes and saying “every day can’t be a party-go-round, Cindy.” Meanwhile, here is this beautiful girl who is changing Gavin’s diapers, and helping Ty put the “wub” in our coffee with nothing but patience, kindness and a heart full of love. She became my most trusted confidant, my little sister, and my shoulder to lean on. She laid with Ty after he died with pain in her eyes as if she, too, was letting go a piece of herself as she kissed him goodbye over and over and over again.
She went home to Bosnia after Ty passed away to be with her family and to move on with her life. Our happy home once filled with laughter was changed forever after losing Ty and then Mely. Our family of five was suddenly a family of three and we had to learn to begin living with this new normal.
I’ve written about Mely before and another incredible person who – at the time – was a complete stranger, wanted to bring some sunshine back into our home by sending Mely a ticket back to the States for a visit with us. Kristi, who is a dedicated childhood cancer advocate, saved her money for months while working at a restaurant in the Hamptons in order to surprise us with one of the greatest gifts imaginable; and last week that gift was fulfilled when I picked up Mely at the airport for a 2-week visit. !!!!! We are SO HAPPY to have here here!!!! XOXOXOXOOOOO!!!!!
It wasn’t until the car ride home that I realized just how much time has stood still since Ty died. Life has been 100% stagnant. Nothing. No movement. No real energy. Aside from the visible proof that Gavin has grown so much, you would think it was yesterday that I was running my fingers through Ty’s hair. When Mely opened our storage refrigerator in the basement to help me put away groceries she spotted the Max & Ruby cake from Ty’s 5th birthday and looked at me with tear-filled eyes. I said, “I know it’s totally weird. And totally gross. Who knows what kind of fungus in growing inside that cake but I just can’t bring myself to dispose of it.” She nodded and said, “It’s not weird. That is where it should be.”
Any parent in my shoes can understand the fear of forgetting, and the phenomenon of life standing still. Because it is that impossible to imagine living – moving on – without your child. The days pass just as quickly, but I don’t seem to feel it happening. And when I do realize how many months it’s been and how many minutes have passed since I thought of Ty, I start to panic. I close my eyes to make sure I can remember every detail of his hands, his fingernails, his freckle foot, his belly button, his hair, his smell, his voice, his scars... In fact, Gavin just started watching Max & Ruby DVDs during our long car ride to camp and as I drive down 684 hearing those familiar episodes I pretend it is Ty in the seat behind me and we are heading down to the hospital for our routine oxygen therapy or bloodwork or what-have-you. In my head I silently recite “I spy with my little eye something…. blue!” as a tribute to those peaceful drives we used to have together.
So when Mely is in the passenger seat next to me, it feels exactly the same for just a brief moment. As we drive through Dunkin Donuts for coffee and laugh over something totally immature and silly, it feels as if she never ever left and Ty is still in the back seat laughing along with us. Until we simultaneously remember he is not and that reality steals back a small piece of our laughter.
While she is visiting, we wanted to see Kristi and spend time with her family, so we decided to visit with her in West Hampton Beach over 4th of July weekend. It was such a beautiful and peaceful weekend and we could not have asked for better weather. We enjoyed time at the beach, at the pool, and fireworks, and we all quickly became lifelong friends.
Kristi is a wildly compassionate person with a beautiful family and her friend, Tara, who hosted us, is equally amazing. Tara and I are one in the same. As I struggle to keep Ty’s memory alive with Gavin as he grows older and his memory fades; Tara sadly does the same with her two beautiful young girls to remind them of their Daddy after she lost her husband in a car accident 5 years ago. The girls were just babies and Tara is an incredible Mother and Father under the most difficult and unfair of circumstances.
Life is hard. This I know. But there are truly beautiful people in this world, and I thank Ty for helping me find so many of them.
A month passed since updating here on the blog because we have been so busy, but I have tons and tons to share and will be posting much more often over the next few weeks. So please check in on us, share, remember Ty, fight for the other children with cancer and sign up for any of our upcoming events. Our latest and greatest includes the Long Beach Luau scheduled for Saturday, September 20th at the Atlantic Beach Club. All of our Long Island friends, please check it out and share with friends! www.tylouisluau.eventbrite.com