Monday, March 17, 2014

17 months gone and today was a hard, hard day


So many realities hit me in the face today.  Ty has been gone 17 months today.  I relived him dying in my arms several times today.  Watching his last breaths in my mind as I tried to concentrate on the road between the office and Gavin's preschool.

Gavin will be five in just a few short months.  Just after he turns five, he will soon be older than Ty ever was.  He needs all new clothes.  He has grown out of the last pairs of Ty's pants that still fit him.  He can't wear his big brother's clothes much longer.  We need to register him for Kindergarten and even though he has an older brother, this will be the first time Lou and I will ever experience putting our child on a school bus.  Moving on to "big boy" school.  Our youngest, our baby, will soon be our oldest.  He is our "only" child (or, better said, our only child left).  Everything feels so final and all of a sudden it feels like it's all happening at lighting speed.  I couldn't catch my breath all day.

I hate the idea of stepping into new territory of "firsts" with Gavin leading the way instead of Ty.  This is a very new, very foreign feeling and it just seems so wrong and unnatural.  Because it is wrong and unnatural.  I wish I could have stopped this.  Even today.  Even 17 months later.  I found myself in hysterics at the drive-in for a dunkin donuts coffee, just begging God to let me have him back.  Making all sorts of promises how it wouldn't change the course of the world, I promise, no one even has to know, please just let me have him back.  Our family will happily disappear into the woods if that's what we have to do, as long as we can be a family again.  These silly bargains always seem to go in one ear and out the other.  Sometimes I feel as though God himself is trying to calm me and tell me to talk to him again when I'm feeling better.  Isn't that sad?  It shouldn't feel that way.  I shouldn't be so aware of how foolish it sounds.  Truth is, it's a fair request from the almighty God who can do whatever he wants, isn't it?  If there's one thing I learned in life, it never hurts to ask, right? So that's what I did today. I asked and begged for something totally unrealistic and I'm sure I will do it again in moments of weakness.

Today has been a tough day for Lou and I both.  I heard Pharrel come on the radio and wanted to punch him in the face.  Sorry.  I can't help it.  "I'm so (not) Happeeeey!!!"  We are just missing Ty.  I look at how tall Gavin has gotten.  How short his pants are getting.  And it immediately brings me back to the vision of me holding Ty's body in front of the long mirror in my bedroom for the last time.  He had died just an hour or so beforehand and I held him while I sobbed uncontrollably, looking at how long he was. Almost mesmerized by how tall he had gotten and what an oxymoron it was.  All I remember thinking at that moment was what a triumph it was supposed to be that he had grown so much.  All through his previous treatment he never grew an inch.  I had plans to visit with an endocrinologist post treatment to try and get him up to speed once he was cancer free.  Now here he was, this tall growing little boy (finally) whose poor little body just couldn't stop that vile, disgusting beast from winning.

When is cancer going to go away and leave these kids alone?????  My son suffered.  Some of my memories are beautiful, and some are unimaginable because of what I witnessed happening to him.  His pain was grotesque and evil.  He was a tiny baby boy and he suffered like you can't imagine.  But he smiled and he laughed and he hugged me so tight that I knew he was my true love always and forever, wherever he goes.  My everything.  He needed me and all I ever wanted in life was to be the one that he needed.  Because I needed to take care of him more than I ever needed anything in the whole world.


How I wish I could have you in my arms again.  I love you so much.

Tonight I had a full-on breakdown in front of Gavin after his bath.  This doesn't happen often at all.  But today, I guess it was just going to be one of those days from start to finish.  Gavin was tickling my ear and he totally achieved the full-blown tickle spell on me.  You know the one.  Where you have the chills all over and you tighten your neck as much as possible in fear of a little finger creeping its way in for a tickle!  He was loving how it tortured me, and my laughter hasn't been so genuine in God knows how long.  Then he said this...

"I'm going to do this to Daddy, too, when he gets home.  Because he will think it is SOO funny.  And I want to do it to Ty, too.  You have to remind me when I am a grown up that I want to do this to Ty when I first see him in heaven.  He is going to love it!"

Yep.  Tears.  Big, ugly sobs.  Face buried in the towel.  Not a proud moment, but what can I do?  It just wasn't supposed to be like this.  My sweet Gavin.  May he always be happy.  Here he is with his leprechaun trap.  He knows how to have fun despite everything, and that will always keep Lou and me smiling :)  See what a big boy he is?  It's crazy.  PS - he put corned beef inside the trap.  So cute.


25 comments:

  1. So sorry you are having a bad day Cindy. Thank god for Gavin. He is such a gorgeous boy and he will keep you smiling on the darkest of days. You may not be physically caring for Ty but you are still fighting for him every day. You are supermom! Love and hugs to you...oxox
    Tonya

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  2. I can't even begin to imagine your agony. What a wretched disease. I hate it. But at the same time I love Ty and his inspiring Mom and family. Not a day goes by that I don't think of Ty -- a boy I never met who made me wake up -- a boy whose smile captured me and whose spirit and strength made me aware. I wish so much for you to be granted your wish that you could have Ty back and for us to not know of him this way. You and Ty continue to inspire me everyday. Peace and hugs to you.

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  3. My love to you and your family. I am eternally grateful that you share so much of Ty's story- it continues and his absence is deafening. I hope you find a small place of comfort so you know how brave do many think you and your family are.

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  4. You are so entitled to these days. It wouldn't be normal if you didn't. Is it odd that I miss Ty when I didn't even know him? He is always on my mind. I wish I could bring Ty back for you... if I had three wishes from some genie in a bottle I'd bring Ty back to you, Ronan back to Maya and total and complete health for my two boys. Why can't it be that simple? Why does this world possess so much heartbreak? I wish I could say something optimistic to you but this flat out sucks and right now I'm just pissed off.

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  5. SuperTy always and forever ♥♥♥♥

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  6. I have always been impressed the way you can get your feeling written down for us to somewhat understand your pain although we will never truly feel your sadness. I was thinking of you and your family just they other day when someone asked me what the rubber band was for that I wrote on my wrist. I looked down and saw ty's name and it brought back so many memories of you comforting Megan in the hospital, and the fundraisers, as I shard the small parts of ty's struggles which I only know about from your writings. Ty will always be in our hearts, as so many other people heats also. I am so sorry you had such a bad day today. Thank you for sharing with us. Know that your family it's in our hearts, and prayers every day.
    Walter Hetzel

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  7. It sounds like you had terrible horrible no good very bad day.

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  8. Strength to you Cindy. Strength and comfort forever and ever.

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  9. I'm so sorry for your loss and your immeasurable pain. Every time I read your posts, I end up in tears. Sending prayers fro your family's strength and peace. I hope today is a better day.

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  10. With tears streaming down I'm so sorry for your bad day. I'm so glad you have Gavin. I don't really get how you are supposed to move forward with so much pain but I know he helps...I pray for you, for your family and for all the kids fighting this monster. May cures come faster.

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  11. Beautifully written...my heart truley aches for you and your family. Betty from Beacon, NY

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  12. Cindy – It’s your old roomie from 81st street. I have been following your blog for years and my heart breaks for you. I cannot even image the pain you have been going through. I know you had a tough day yesterday so I thought I’d remind you of a funny memory that I was just telling someone about. Do you remember that day in the bar where you came out of the bathroom with something stuck to your hair??? That story makes me laugh every time I think of it. Hopefully that memory will bring a smile to your face and a much needed chuckle.

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  13. I haven't had my big breakdown cry moments for Ty in a long time. This was tough to read but you shouldn't be sorry for letting us to at least have a tiny chance of trying to imagine your unimaginable pain. Holding a dead baby boy in front of the mirror! What could be more horryfying than this image. I can't imagine how he looked like. I can't imagine your beautiful most perfect little boy being dead. I still can't. Sometimes I have a fight with my little boys and they go to school and I suddently catch myself on how I want to see them and hug them and tell them I am sorrry for being upset or for screaming at them in the morning. I know that you don't get that chance. I wish I could help you. All of us wish we could. This is what moms want the most in the world just to be able to fix everything for oour babies and love them. Because at the end of the day you feel that thats your job. MOM should be able to fix everything and take care of everything. And evil cancer took that away from many moms and from you. However Ty was and is a very special boy and in his eyes you did take care of him, you loved him and made him smile and you DID EVERYTHING. You are still doing it. Now you are doing it for Ty and Gavin and millions of other babies. Thank you for that.
    I can't believe Gavin will be going to Kindergarden. Thats a huge step. And a school bus. Are you kidding me?! I would be crying just knowing that he is somewhere on a big bus and I am not there to control everyhting around. Your younger/older big beautiful boy. He is pleasure. His is made of goofness and love and smiles. I know Ty will enjoy his tickles one day :))
    Sorry to hear about your rough day, about your rough few years. So sorry that Ty is not here. Offer you love support streangh and always always think of you and your boy.

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  14. It is wrong and unnatural, Cindy, to lose a child. That is not the way the circle of life is supposed to happen. Thank God for the love and compassion of others who are there to help us through such tragedies.

    Ty was a tall boy - I remember thinking that when I saw the news video a few days before he passed away. You had to hold Ty up to cough during the interview, and I thought, such long legs on this 5-year old boy! Now Gavin is getting those same long legs.. :)

    You are amazing, Cindy. You have survived 17 months and still find the strength to get up each day! Gavin is blessed to have such a strong momma! You are and always will be my inspiration as a mother.

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  15. ((Hugs)) to you my friend. Cancer is an evil vile monster. I pray for a cure <3

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  16. You are 17 months closer to seeing your precious gift in Heaven. You, my friend, have a one way ticket there when the time comes!

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  17. Wow Cindy. I love how you are so real with your life. Ugh. No words. Through your words I begin to understand life..

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  18. Oh Cindy & Lou,

    This post brought me back to reality and I cried with you. I can't believe it has been 17 months. :( He was such an amazing little boy, I fell in love with YOUR son as did so many other people. I will never forget the gift he gave me and how he changed me forever.

    I don't comment as much anymore, but I promise you that I think about your family every single day. I was watching Michael and Kelly with unstoppable mom's and no offense, but NONE of those mom's could ever even hold a candle to you. You are an amazing woman, and I could never do what you and Lou do. . .Never. I am too selfish, but you care about Cancer and what is happening to children all over the place.

    I have not forgotten about you! I think about you all the time.

    (((Hugs)))

    Joy Marielle

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  19. I hope this amazing cancer news makes your day just a little brighter. Keep on fighting for Ty and for future kids like him. http://mobile.theverge.com/2014/3/20/5529084/new-drug-blows-up-brain-cancer-cells

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  20. When you wrote, "I promise, no one even has to know, please just let me have him back. Our family will happily disappear into the woods if that's what we have to do, as long as we can be a family again." well, that just broke me...big sobs. So unfair. Wishing your beautiful family peace as you navigate through this life. Really, I have no words...just know Ty is never forgotten

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  21. God will never be sick of hearing from you or ask you to talk to Him at a better time. He weeps with you, I truly believe that. He is close to the brokenhearted. I'm so sorry, pediatric cancer makes no sense... It's not fair. Bad days suck and you have every right to have a breakdown at such a sensitive moment. Gavin is going to grow up to be a wise and humble man through all of this. The way you write about him tells me that. He is a gentle soul with so much love to give. You're doing an amazing job. And never forget that Ty lives on in the hearts of SO many people, through his legacy and through your beautiful words. When I read your blog, my heart breaks into a million pieces, but at the same time I'm inspired and hopeful and I know that the world is a better place having had Ty in it.

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