Saturday, August 12, 2017

The Emotional Hangover

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


10 comments:

  1. You wouldn't be the same if he had survived. That fear that shapes you and forced the perspective goes away when they are safe. I continue to follow your story because it is such a beautiful, raw and heartfelt testament to a mother's love. I hope you decide to write a book someday Cindy.

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  2. Cindy, I have followed Ty's story since the beginning of your blog. I take my children to your incredible Mess Fest event every year - and they LOVE it. I have always wanted to say "hi" to you but never have the courage. I honestly don't know how to go about it. Ty's passing crushed me, and I am just someone who knew of him and his story through your writing. I cannot even begin to imagine your pain. I want you to know that he changed everything for me. I look at life so differently now. I am a better person because of him. I tell everyone about Ty's story to help raise awareness and shed light on what's mostly kept in the dark with pediatric cancer. Please know that my heart is with you today and always. You truly are incredible! Never doubt that! Xoxo

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  3. Cindy, I came across your blog about a month ago. I do not know you, I live across the US from you, in Washington State, but felt drawn to read your blog. Over the course of several days I read the whole blog back to several weeks before Ty passed. Your blog has touched my heart so much and I cry as I read every single one of them. I think about Ty often. I have a best, good boy in the whole world also, his name is Crew. He is 2 1/2. He reminds me so much of your sweet Ty. ❤️ As I was watching Crew play outside the other day, I was thinking about Ty's story and crawling right in front of me in the grass, was a beautiful orange lady bug. It was the strangest thing. I knew it was sent by Ty. �� Cindy, You are such a strong, amazing woman and mother and the foundation you have created in honor of your baby boy, Ty, is the truest testament of undying love for your beautiful boy! Hugs my friend ❤️
    Sincerely, Alison Codde

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  4. There are no right words to say in reply, or words of encouragement. You're right, it would be better if Ty was still with you. But when you look in the mirror, you should see a strong woman who gets out of bed every day despite that, tries to be the best mom/husband she can be, and works to try and make a better world for the future Tys out there and the parents whose own bubbles shatter daily.

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  5. I love you so much Cindy. I wish for you to have "unbridled happiness". I'm so sorry that your heart is so broken. I love you, and you are a truly amazing person ��

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  6. Cindy, thank you for sharing this beautiful piece! Your strength keeps me going! Be strong for your children and for us!

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  7. I wish you still had the bubble...it stinks that too many families don't get more time in the bubble -- it's hard enough dealing with Cancer in adults...it all remains beyond unfair and just not acceptable. Thank you for your words to remind us to enjoy the bubble as much as we can and moreover for doing so much for research, for other kids and for educating all of us. Ty will never be forgotten.

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  8. Thanks for your words! Always inspiring!

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  9. I think of your Ty often and though we've never met, your words are so beautifully raw and fill my soul with so much that I lack, that I take for granted, that I struggle with. Thank you for sharing your heart and soul and know that your Ty will forever and always be a part of us because you've given him to us through your words and actions. My daughter for some strange reason is afraid of ladybugs but me, I've always loved them and now when I see them I say "Hello, Ty!" and let my daughter know she has nothing to be afraid of.

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