For the fifth year in a row, thousands of people gathered to pay tribute to all kids who have been impacted by a childhood cancer diagnosis and to celebrate childhood in their honor at the Mess Fest. The event was outstanding. We had more people than ever (which is hard to imagine knowing that 2,000+ people have come year-over-year), we added lots of fun new activities, Peppa Pig was everywhere, the media coverage was what dreams are made of, and there were so many VIP families that touched my heart and made it that much more special. The day before the Mess Fest, I felt Ty’s presence and it was SO STRONG that I was immediately at ease. I can’t explain it, but somehow he communicated to me that it was going to be amazing, and I was 100% confident in that notion, enabling me to thoroughly enjoy that magical day.
An event of this magnitude takes months upon months of planning, and an army of dedicated Board members and volunteers who work so incredibly hard to pull it off. My gratitude for them brings tears to my eyes.
The most amazing part of the day was seeing the VIP kids who we honor at various activities, and knowing how far they’ve come! This is what it’s all about!!! Right here. The Mess Fest is for Dylan, and Brynlee, and Chloe and 100+ more honored children represented by these signs.
But for all of the incredible triumphs, and the families of children who are thriving against cancer, there are families like us, whose children are on the "forever" signs. It was McKenna’s birthday and I thought of her often throughout the day. For as light and fun and happy I was, I felt equally heavy each time I took a moment to remember the children I know and love on the forever signs. McKenna's beauty stops me in my tracks, and David is just the coolest kid I never got to meet. I could go on and on. Whenever we go through the signs at the TLC Foundation, I am always so touched how everyone treats their photos as if it was one of our own, and we often stroke our hands across their faces as we read their names aloud.
After such a tremendous high from a successful event that required so much planning, I’ve suffered a severe “emotional hangover” all week. And I can’t stop myself from getting totally hung up on all of the anniversaries coming up. Like today, for example.
Exactly seven years ago I called the pediatrician in the middle of the night to request a call-back. The on-call physician and I spoke calmly about how poor Ty was whining all night, and couldn’t tell us what was wrong. Yes, it’s happened before. We were scheduled for a sleep study in a couple of weeks to test for night terrors or physical discomforts, but I couldn’t wait any longer. This seemed like more than tired whining. It seemed like he was in pain.
We agreed it would be best to take him to the hospital. Someone came over to watch Gavin at sunrise (my mom, most likely) and we drove to Cohen’s children’s hospital. He was wearing black shorts, reef sandals, and a yellow “NYC Triathlon” t-shirt because Lou had recently completed the race. I came across that t-shirt recently and chuckled because Bodhi could easily fit into it… Ty was 2 years and 10 months old with a head full of golden curls at the time (Bodhi is not yet 10 months).
Ty was happy when we arrived at the hospital. With the exception of tired eyes, he was so sweet and thought the waiting room was very exciting. The blood pressure machine was a hoot! The scale… loads of fun! The adjustable bed? Forget about it. The finger prick… not so much. The nurses adored him. No one showed even an ounce of concern that he was a child who was sick, because there was none. He was jumping, laughing, they were as baffled as we were and seemed confused about why we were there.
I appreciate that the pediatrician, however, agreed that his sleeping behavior was odd enough to call for a scan. She was kind, she was sure it was nothing, but ordered the MRI just to be sure and to help us get to the bottom of it. I was grateful for her validation.
And from that day forward, August 11, 2010, my baby boy suffered. And that’s just the cold hard truth. The suffering began with the very first blood draws/IV lines and it never ended for the rest of his life. Just like that. Literally, overnight. Life as we all knew it was forever changed.
I try to be positive and I often claim that I am a better person because of what we’ve been through, and I do believe that to be true. I lived in a bubble before cancer – the same one I see a lot of moms living in. It’s a fine, often happy, neurotic little bubble, but a bubble nonetheless where silly little things have a big impact and criticisms run high – of oneself and of others.
Starting August 11, 2010, mine popped. My eyes were opened and I can’t unsee the things… I can’t unfeel the feels. I experienced a love so deep, and a fire in my heart so fierce, I became a lioness – followed by a loss so grave that I can never feel unbridled happiness ever again (until the day my spirit binds with his again).
Today I like to think that I am more loving, empathetic, compassionate, and grateful for my blessings. I live with clarity and perspective. I try to remember and be grateful for the time I had with him at all. How lucky was I? He was mine!!! That still amazes me.
It all sounds so positive and admirable, I know, but most of the time I call bullshit on myself. Because I know that I would still be all of those things, a better person, blah, blah, blah, if he survived. But I would also be happier because I would have him by my side. I want the stupid bubble back. Seven years and I don’t even know who I am when I look in the mirror.
'It's so much darker when a light goes out than it would have been if it had never shone.' - John Steinbeck