Saturday, August 24, 2013

Life goes on. Whether I like it or not.

Some days I just don't want to live my life without him in it
I haven’t been able to update the calendar in my kitchen since July.  Every two months, I erase and write in the upcoming months, filling in the birthdays, anniversaries, appointments and other plans.  That means I was supposed to write out August and September by now.  But I can’t bring myself to do it, just as I couldn’t bring myself to erase that same calendar for months after losing him.  In those eight weeks, it shows our life before we knew Ty’s cancer returned – with a hopeful “first day of school” written in – and then “Ty is 5!” written happily, a little square on the wall that I would often stare at in disbelief until I finally found the strength to erase it.  Of course, I took pictures first.

It looks like such a normal family calendar, until you look a little closer and see that Hospice was coming by one day in September for our orientation.  MRI isn’t a common thing to be on the family calendar, but we had a minimum of one every two months.  I kept track of how often Ty went to the bathroom on our kitchen calendar.  Weaved in with all of the celebratory reminders, are the very worst kind of reminders.  I still can’t believe this happened.  I still expect to see him on the couch every day.  I listen for his laughter.


August 17th was ten months without Ty.  We spent that day at a memorial for our friend’s Dad in Buffalo, who fought brain cancer right alongside Ty and who recently died from it.  Cancer, how I loathe you.

September 17th marks the day we went home on hospice care one year ago.  Then comes October.  October 4 should be his sixth birthday, and October 17th will be one year without him.  How will we survive this? 

When you are in the worst pain imaginable – when you feel robbed of the possibility of ever being happy again – you simply don’t want to hear that "time heals."  You want to scream at the people who say it because it is that impossible to imagine.  And at almost one year, I am not all better by any means, but I am doing better.  I still cry off and on every day.  In fact, some days are harder than ever and it's all so unpredictable.  This loss is one I will grieve for the rest of my life, that I know for sure.  But still, they are right.  Those words are beginning to ring true, ever so slightly.  In time, I have been able to do more and more without bursting into uncontrollable tears.  Slowly, I find myself trying to live my life again (until I get blasted over the head with one-year anniversaries).  I'm not fooling myself.  I know these next two months are going to be impossible.  I need people to keep talking about Ty.  I never want to feel like anyone expects I should be "over it by now," because I will never, ever be "over it."  But it's also okay to talk to me about everyday bullsh*t.  I'm okay enough and I kind-of need to talk about nothing important just to pass the time until these months are behind me again. 

I tried so hard to be the best for Gavin today.  I never, ever stay home alone for long because it is always too hard for me to feel such silence and absence.  But today the weather was pure perfection and we weren't up to anything but hanging out just me and G.  We went swimming in the morning, had pancakes AND French toast with extra syrup.  We made Play-Doh. I hid my tears when I filled the plastic ice cream cone with swirly play-doh because that was Ty’s favorite part.  And when I found the old pieces of Play-Doh candy shoved into an old container it was as if a rusty nail pierced my heart.  We went swimming again late in the day, even after I had already cleaned the whole yard, washed all the towels and put everything away.  I made a big dinner, which I don’t do often. 

At one point, I had the TV on the background, which is really rare, and you can imagine my surprise when I heard the very first note of the intro song for Max and Ruby.  Oh God how that hurt.  And it hurt even more when I saw the excitement in Gavin’s face.  He gasped, “It’s Max and Ruby!!” and he jumped down from the kitchen table, abandoned his super heroes and started watching it. 

Max and Ruby filled the house today, two episodes back-to-back.  It was the very first time I allowed that show to play in this house since Ty died.  I tried to snuggle up next to Gavin and watch with him at first, but that was simply too much to bear.  I smiled to hide the hurt, I scooped him up, reminded him how much Ty loved the show and I put him down in Ty’s coveted corner spot on the couch.  I stepped out on the porch, listened to the show, remembered all of the DVDs that are sitting on the top shelf of Ty’s closet because I couldn’t have them around anymore, and I cried.  Just for a few minutes, and then I felt better.  I guess I really am getting better at this. 

Ty meets Max & Ruby = Best. Day. Ever.
At his dad’s eulogy our friend described his father’s fight against cancer as one that defied the odds and he talked about how every day with him was a gift.  Even the most painful days.  It’s so wrong that I have to nod in agreement about my own small son, only five years young, but there is something so very true about understanding how special our time was together.  His life, however short, was filled with miracles and beauty.  I am so blessed and lucky to be his mom. 

video

This boy scattered sunshine wherever he went.  I have been watching videos and looking through pictures all night long.  Spending time with my Ty.  This one is just before he was diagnosed.  “I do art!”  So cute, and so simple.  I miss that voice!  I just love him with every ounce of my being.  Never has a love been greater or bigger or better, more pure or more beautiful.  Goodnight my sweet angel baby.  I can't wait to see you again. 

God how I wish I could go up to bed and find this again.

36 comments:

  1. Life...what a mystery. Thank you for sharing this incredible insight. "TIME HEALS ALL WOUNDS"...No. Time just allows us to see things with advanced clarity but it will always remain a mystery. Sending you healing thoughts of strength.

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  2. Life...what a mystery. Thank you for sharing this incredible insight. "TIME HEALS ALL WOUNDS"...No. Time just allows us to see things with advanced clarity but it will always remain a mystery. Sending you healing thoughts of strength.

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  3. So beautiful. Thinking of you all, always. <3

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  4. First of all, he won't be forgotten. I didn't know him, nor you, only found you via facebook, and yet he's touched me and found a place in my pyche. So I can only imagine how much he's a part of you.

    I've re-written this paragraph about 3 times - first asking about how you guys individually were dealing with it - how Gavin might be feeling - then I realized we're not even friends, so I wrote 'if we were actual friends I'd ask...'. Then I realized my questions were too 'blunt' or something. So then I wrote 'I'm not the most socially adept', erased that, and now writing this paragraph which really says nothing, but I wanted to be truthful... I don't know.

    It's not fair, and it sucks, and I'm sorry.

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    1. I have done the same thing,

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  5. SuperTy ALWAYS AND FOREVER ♥♡♥♡♥♡♥

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  6. SuperTy ALWAYS AND FOREVER ♥♡♥♡♥♡♥

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  7. SuperTy ALWAYS AND FOREVER ♥♡♥♡♥♡♥

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  8. So beautiful. You have such a way with words. Ty and your family will always hold a special place in my heart.

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  9. You are the most honest and real person I have ever been a part of!! I don't know you and have no Possible idea of how you go on, because as a mom and grandma, I thank you, for letting me know you and your son, I still grieve for him as if he was someone I knew, and as weird as it sounds, I really love and miss him. And I pray for you, taking care of another child and having to play, listen and make life good for him, despite of having to do the same activities!! I don't think I would be able to do that!! Being an amazing mom and not let him see how much it hurts you to watch Max and Ruby, and you were strong enough to leave it on! Thank you is all I can say, you make my worries and struggles seem so minor. Thank you again and Ty will never be forgotten......

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  10. Your baby will never be forgotten. You have spread his name to all corners of this land. Because of Ty's journey and your voice there WILL be changes made in the way childhood cancer is fought. I'm just 1 in millions that has and will continue to donate to childhood cancer research and only because of you, Ty, and your story.

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  11. There is something about that "1 year mark" (because I do not call it an anniversary)of someone you love death...It was for me like that with each of my parents...I did not want to see or maybe believe that they were gone. One year makes it incredibly real and some sort of strange finality that you did not recognize when they first die. My heart is with you and your loss is so difficult....but I hope you find it in your time how amazing you & your family have been throughout this ordeal. Your Ty became a hero to many and I pray that you find comfort & solace .... as he wraps his wings around you for all his mom & dad do helping his spirit live on ....

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  12. ❤as beautiful as the world is when you lose a great love it just seems a little dimmer ❤

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  13. I don't ever expect you to be "over it". Honestly, I don't think I will ever be over it and I never met Ty. I will always love and miss him.

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  14. Oh Cindy - I read your posts and tears drip from my eyes for so long after. It hurts my heart so much to think about the pain you are going through, you all are going through. It is just not fair - Ty was such a beautiful boy and I think about him all the time. Obviously so many of us do - I grieve for him like he was a member of my family. I send you love and strength. I admire all you are doing to make a difference for other kids. Honored to be a part in helping you achieve great things in Ty's name. I'll never forget your boy - am so grateful that he's helped make me a better mom. Sending love to you, Lou and Gavin. Praying for Ty to be at peace until you can see him again some day. Donna

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    1. Ditto ditto ditto! Xoxo

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  15. I am thinking of you this week as kids go back to school. I saw a boy on the playground at the start of school who reminded me of Ty and I think the world stopped for a moment as I thought of him and your family and how he should be playing on that playground as well. My heart is broken for you.
    We have neighbors we just love and the woman, who is in nearing 70 lost a son to cancer when he was 10. I told her I think about him often. I do... just as I think of you guys... Just know prayers go out for you often. SuperTy always...

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  16. I am sitting here reading this crying...and my son turns to me and says "mommy, is that SuperTy? I said yes sweetie....he says, you are crying, does this mean we can have muddy puddles again?" Your story, your son has inspired so many families to enjoy every single day together. He will not be forgotten as he has forever touched the lives of so many people. My heart goes out to you and I pray that you find strength, although even I as right this I can't help but think to myself how strong and inspirational you already are.

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  17. I too am crying. I never met Ty but I love him and miss him just like he was my own. It sounds crazy to say that, but he stole my heart and took a piece with him when he left.
    My son is 4 and loves Max and Ruby, it has not been on Nick all summer and then this week all of a sudden we heard the music and my son also screamed MAX AND RUBY and ran in to watch. I immediately thought of Ty and out of nowhere a lady bug landed on my shirt. I like to think that Ty was excited also and sent a little sign.
    Sending you big hugs, lots of love and strength to get through each day.

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  18. My heart bleeds for you. Though I know there is nothing I can say to make anything better, please know that Ty will never be forgotten and you have a community of people praying for you and your little angel. Stay strong.

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  19. Ty we share the same birthday. I will light an extra candle just for you.

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  20. Cindy, I will never stop thinking of Ty and you and your family.He had me won from the beginning of your posting. Still today I read your posts and cry for you. I know you will never " get over it" and I would not expect you to. What an awful hurt you must have. I look at the pictures and videos you share and my heart breaks for you over and over, I can not imagine the pain you feel every day but I pray for you all and will always. I was feeling down one day a few weeks ago and all of a sudden a lady bug landed on my arm IN MY LIVINGROOM!I smiled and thanked Ty for coming to remind me that things are not so bad. I do believe it was him sending a sign and I just prayed again for all of you and went on with my day feeling better. Thank you for sharing him with all of us.I wish you more good days then bad, more happy times then sad. Love , Jean

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  21. Cindy, your words, always give me comfort. Even as heart wrenching as they are, I find comfort in them. Perhaps it is because I feel the determination in your voice to spread the word about childhood cancer, or perhaps it is the determination not to ever let the world forget that a beautiful, innocent baby died from this horrible disease. I am not sure, but I have to always read your blog. I am drawn to it. (sorry if that sounds weird) I mean it with the upmost respect. My heart bleeds for you. I can not imagine the pain of losing a child. I lost my mother October 1, and so I feel the pain of losing someone. But in the circle of life, we know that we will someday lose our parents, but we never expect to lose a child. I know what I feel each day, so I cannot imagine what you must feel. Please know that I pray for you, your family and your beautiful angel in heaven. I try to spread the word about childhood cancer and about all of the angels whenever I can. I hope and pray that we see an end to this horrible disease in our lifetime. May God Bless you and keep you in his care. Love Angela

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  22. Talked about Ty with my family just yesterday around our Shabbos table. Then I read this beautiful post. So you see, he is in the hearts and minds of all of us. Not to be forgotten. With some events - like the loss of precious Ty - one has to reconcile the passage of time as you and others have mentioned, and not just buy in to adages and expressions. It just doesn't feel respectful to him.

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  23. All this time's passed, and I still can't fathom what you and your family (and so many families) have gone through. Know that I still think of Ty every single day. I wear my SuperTy shirt proudly, and was so happy recently when an older man asked me what it was about. I smile when my husband comes downstairs in the morning wearing his SuperTy shirt. I hope this September is shining gold everywhere we look, and I hope that eases the pain, even if by just a hair. Hope today's beautiful weather brings you some peace and genuine happiness.

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  24. This was a tough one to read. Not than any others are not but this one was really hard. I was sitting in the kitchen having my coffee and just randomly thinking of your beautiful boy that I never met. I could imagine him putting love in your coffee, laying to watch his max and ruby or just sleeping and breathing his sweet breath on your during nights. How much I wish his outcome would have been different. You know as harsh as it will sound since Ty died and I have become such a supporter of any pediatric cancer causes I can't bring myself to fall in love with another baby fighting cancer. I read news about some known cancer babies like the 2 yo baby whose mom got so many pizza deliveries or other babies and while I wish and pray for them and their families it's just not the same. Ty has become that one and only for me and I can't comprehend tears in my eyes and why my heart aches Everytime I see his picture. I just so love your baby boy. I wish so much also for him to be waiting for you in your bed. Cruel cruel cancer world. Ty deserved to live. We will never stop thinking about him talking about him. I love and miss you baby boy. This was trully random that I wore your tshirts first time today. I sweat we knew each other in previous life.

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  25. It is said by proffesionals that mourning is a process. And that you have to go to different stages.

    Knowing that by this, it doesn´t mean you are going to be capable ever again to live like you did before Ty was in this earth. Probably people gets tired of seeing you crying or stuff like that, that´s why we tend to say things like " don´t cry, he wouldn´t like to see you like that.." the truth is that you do have to cry, because that´s is one of the few ways you have to express grief, and feel a little better. They say, that when you loose a loved one, fisrt you deny it, then you are angry, you feel angry with everything and everyone, then you feel depress, and then you get to accept though your life is never going to be the same, you find a reason or reasons to live.

    People have the fear they are going to forget that person, but that never happens, no matter how long..
    Probably what helps you more than anything else is just to talk to other parents who have lost their children. Unfortunately, though the we follow Ty and he and his story inspire us so much, i guess that other parents like you can make you feel like more understanded.

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  26. Thank you for sharing such personal emotions with us Cindy. I want you to know that I will never forget Ty. Ever. Even though we've haven't met, his beautiful face is burned into my mind and I think of him every morning when I go for a run. I slip out the door at 5 am, while my own little ones are still sleeping and dad hasn't left for work yet, put on my headphones and run. There is a bend in the road that I always hit when Mumford & Sons pops up on my playlist. And there he is, your Ty. I think of his beauty, his spirit and the love he has brought to so many people he has never even met. And because of him, I run faster, always thinking "this is for you Ty".

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  27. Cindy I know I will never forget your little boy. I personally know people who, through your blog, also know of him and his legacy. You did that for him by being the person you are. I read all your entries, and follow your journey. Like you, for my own reason hate cancer. We have to go on for the loves in our lives and, for the loves, the beautiful angels we will see again one day.

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  28. I have been following your blog since September of last year, just when Ty was put on hospice care. It just doesn't seem real, that so much time has passed since then. The pain for you is very real, Cindy, so sorry you have to live this life without your precious Ty. It still brings me to tears every time I see his smiling, beautiful face. I loathe cancer right along with you.

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  29. I have been following you since September of last year as well. I can't believe it's coming up to a year for me too and I'm sad. I simply cannot imagine how strong you are to continue to do what you do. The only thing I can offer is that I miss Ty too -- I miss him and so many kids that were taken too soon. Cancer sucks. I love how much you love Gavin...he's growing into such a strong boy -- you are teaching him to be a survivor...Hugs from the Midwest. Laura

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  30. Hi Cindy- That darling Ty is the most sweetest boy ever and he will always be so. I know you will never-ever overcome your loss and it breaks my heart, but just remember that he will never stop loving you either. He is always there watching over you and his spirit is so strong and seeing you being so good and kind and everything in your power to fight cancer in other kids. He see's how amazing you are Cindy Campbell and although you don't know me, I'm sooooo proud of you and the fantastic work you are doing in honour of Super Ty!!!! XX :) Kiwi Mummy (New Zealand).

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  31. Yes yes yes yes you can

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  32. This story made me cherish my role as a mom to an 8 year old with more zeal and zest. My problems are so small.......hugs to you.

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  33. I, too, want to scream when I hear people say that time heals all wounds, Cindy. It doesn't. It only puts more space between the time it happened to the present- nothing more. Nothing heals the sense of grief caused by loss, *especially* the loss of a child. I am glad to see you talk about this and hopefully it will help people to not feel obligated to fill the silence with that phrase. Always thinking of you all and as always, sending love and support.

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