Friday, December 21, 2012

Begging for a do-over

The moment Ty was born, I experienced the biggest crush I ever had in my life - times infinity.  And that pure and giddy love never faded or became routine.  He always amazed me and continues to do so.  I was in awe just watching his every move (or his motionless, slightly pursed lips when he slept).  When I returned to work, there was nothing I enjoyed more than picking him up from Sissy's at the end of the day.  Nothing.  He always made everything better, no matter what.  He was everything happy and sunny and perfect.

When Gavin was born, I didn't think I had room in my heart to love him as much, but instead of squeezing him in, my heart simply doubled in size.  And it continued to grow with every interaction between them.  I was so in love with them both, and so happy they had each other.  Gavin and Ty completed me, and they completed each other.  Goofballs.  Best friends forever.


I feel like Gavin is so alone now.  He needs someone to dress up and run around the house with him besides me.  I try, but I don't last that long and I'm not as fun as his brother would be.  I mean, just look at him.  It's adorable, but he needs more distraction or I'm afraid he will obsess over Spiderman forever :)


I went out last night and left Lou with Gavin for a "boy's night."  It was the cutest watching how excited Gavin was before I left!  He couldn't wait to put the train together under the Christmas tree and watch movies with Daddy.  I was happy they were going to have that time together.  It was also good for me to escape for a little while.  I am proud of us for giving Gavin Christmas even though Lou and I would rather just skip it this year.  He is the age when the switch turns on and the magic of Christmas lights up his eyes.  We need to give that to him, no matter how much this holiday is hurting us.  We just put on a happy face and go through the motions and find joy and comfort in our perfect tree that Ty picked for us. 

Whenever Gavin sees a baby on TV or out somewhere, he loves to show me and tell me how much he loves them.  He said something similar to Lou last night that prompted him to ask, "would you like a baby brother or sister?" to which Gavin answered.  "Yes.  But.  I already have a brother."  Lou said, "I know, but Ty is in heaven now and we won't get to see him for a really, really long time."  Gavin thought about it for a second and said, "Okay.  Then I want a little brother named Ty."  Makes me cry.  Lou and I are aching.  We are grieving.  We aren't planning any babies - just want to answer that question before you ask.  We do talk about it, though (we always have) and that's why he mentioned it to Gavin.  Just to see his reaction.

I was looking through the camera tonight, and saw this picture of Gavin looking at a ladybug on the ceiling.  I asked Mely about it, and she said the ladybug appeared one day while we were away so she snapped a photo for us.  Today I was thinking of Ty as I was carrying packages into the Post Office.  I was specifically thinking how if this was 3 months ago, I wouldn't have been able to carry Ty and these packages at the same time.  Reflecting on the physical struggle we both endured made me feel SO GUILTY that I was just zipping around town now, getting things done without him.  Of course, right as I opened the door I saw a very random printed photo of a ladybug posted to the window of the post office.  Never noticed it before and I felt better immediately. Thank you, Ty.  You really are with me everywhere I go. 

I know.  It's almost impossible to see, but I promise it's there :)

My cousin recently sent me a picture of me and Ty in the pool together from back in August.  Just three weeks or so before hospice.  I was so happy because we don't have any other pictures of him in the pool since 2010 and I think he is looking at some angels in this picture, don't you?  He's not looking at me, he sees something in the distance.  I can't flip this photo for some reason, so you'll have to tilt your head.  Sorry :)



I had a complete and total breakdown on my way home last night.  As always, I save my crying for the car.  I instinctively looked for Ty in the back seat and caught a glimpse of his puke bucket that I've left in there just in case I wake up to find this is all just a nightmare.  I lost it completely.  I was crying and talking to Ty, telling him how much I miss him and love him.  Then I started talking to God and just begging, begging, begging and hitting my steering wheel.  Begging turned into screaming.  "Please give me a do-over?  I want it back!  I want my life back!  I want him back!  I know you won't, I know he's not coming back, and I know he is safe and he is okay but I still want him back!"  Over and over again I asked God to just take back the last two years and put me in my perfect, simple life in July 2010.  Then we could move forward from there again, and Ty will never get cancer.  Or we could just live in July 2010 forever - I would be happy for time to stand still.  I just wished over and over again for something I know I can't have.  I was upset (understatement).  I told God how hard I was trying.  How much I let go and trust in Him but that it is really, really hard to maintain nowadays.  I told God that I trust in Him still, that I was sorry and ashamed for begging, but I'm human and I just love Ty so much, and I can't stop myself from wanting him back.  It's simply impossible not to want.  Not to wish things turned out differently.  He understands.  I'm allowed to have these breakdowns.  These outbursts are my therapy.  I don't walk away with any answers, but I do feel calm and more at peace afterward.  I believe my God "gets me" and takes no offence.

I think about Ty every second of every day.  My crying is usually triggered by the memories of all his pain and suffering.  Every time I think back to any time while he was in treatement, there was always some sort of tragedy tacked onto every good memory.  The vacation at the beach interrupted by emergency shunt surgery.  Christmas last year, interrupted by a brain bleed that took out the left side of his body.  Our Make a Wish trip to Disney included morphine every four hours and emergency trips to the pharmacy for additional pain medicine.  Poor Ty just couldn't catch a break, but boy did he beat the odds despite getting knocked down every step of the way.  Like I always say... we call him SuperTy for a reason. 

I threw away Ty's puke bucket from the car tonight.  I was feeling stong, it was a big step, and it turned out fine.  In the bucket, which also served as back seat storage, I found a thermometer, three boxes of tissues, a belly tube, a syringe, an unopened can of Ty's daily shake, a little superhero toy and two extra diapers for Ty (even though he was a big boy and totally trained, he wore them to feel safe just in case).  I actually hesitated to throw out the syringe because I thought "oh, this is a good one and these are hard to come by," until I realized I will never need to use it again.  Big exhale.  No tears.  I did it and that's that. 

SuperTy was featured next to SuperMax in a recent newsletter for St. Baldrick's - a tremendous foundation also dedicated to childhood cancer research.  The largest of its kind and we are big supporters.  To quote the newsletter, they "both love rockin' crazy hair styles and super heroes who take down the bad guys. They were both diagnosed with childhood brain tumors before the age of 5, and couldn’t walk, talk, or sit up without support."  The difference is that Ty lost his life and Max is still fighting for his.  I can never stress how important research funding is and will continue to be until these kids can be 100% saved.  We raced against the clock with Ty for two years, but research wasn't fast enough and the therapies weren't good enough.  There are amazing things on the horizon but there is also so much work to be done.  I just want to thank you all for supporting the cause and being such wonderful believers in the difference that all of us cancer moms are making.  Max's Mom is one of the Baldrick's team "46 Mommas Shave for the Brave" and she sells amazing hats through the MaxLove project.  I just received one in the mail today and I love it (thank you Donna!).  We are banding together, us Moms, and just wait until you see what we can do!  PS - yes, that is a  cheesy lo-fi instagram filter to make me look blurry. It was a long day and I otherwise felt haggard :)




46 comments:

  1. Hi Cindy- I was having trouble sleeping tonight and you came into my thoughts. You're staying so strong. Thinking of you all everyday.

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  2. I have so much love in my heart for Ty and your family I pray for Ty and your family constantly. I think it is so awesome how Ty shows you signs everywhere with ladybugs :) you are a sting mama and my hero you are a big inspiration I can't wait to see what you gave planned I am behind you for everything ;)
    Love always
    Sabrina Maldonado

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  3. Praying For You Cindy <3

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  4. Sending love and hope to you and your family. It's so wonderful you are 'doing' Christmas for Gavin, that must take so much strength Cindy.

    God Bless you All,
    XXX
    Nicki, Brisbane

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  5. I am thinking of all of you and sending love. You are stronger than you know and I find complete inspiration in your words. I am so sorry Ty cannot be with all of you, but he has changed and touched many lives. Cindy you are a hero as well and thank you for sharing your painful journey.

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  6. Remember it like this...
    Yesterday was a treasure
    Today is a cloud
    But tomorrow will be a rainbow...you will climb that rainbow with Ty - he will be with you every step of the way. There will always be signs, maybe little or maybe big. But at the end of that rainbow, you will have that treasure back again.
    I had sent you just 3 examples of how my mother showed me she was with me and helped me throughout my life. Believe me...Ty sees you, hears you, and still feels your love.
    God bless.

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  7. Hi Cindy,

    I can't even begin to imagine how hard this is, but your courage and strength are amazing! God will see you through this, and Ty must be so proud of his mommy... you are doing great things!!!

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  8. Cindy,

    I haven't written in a while but I have been reading and thinking of Ty and your family every day. I'm so sorry for all of the pain that you are going through. I am so grateful that you have shared his story and continue to share it with us. I know that he will continue to inspire all of us as do you. You are such an amazing person and I wish you peace for the holiday. I know it will be extremely difficult for all of you but I hope that you can feel Ty's presence throughout the coming week.I do believe that you will do amazing things in Ty's honor.

    Take Care.

    Ann from Buffalo (Meg from Indiana's sister)We both think you are amazing and love Ty.

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  9. Love gavins spiderman! Hes such a charachter

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  10. You have, once again, said your thoughts so beautifully. I think of you all the time. I know I only feel a slight portion of your pain. Though, having a son the same age as Ty (6 months older) and Evan is just turning 3, that, had we met under other cicumstance (we haven't met, though I hope to through volunteering) we would have become friends and our boys would play together. I know you are stugglig with this hard time, once again, the Holidays, you have remained strong and in the face of the most awful thing any one, any mother, father or brother, should NEVER go through. You continue to inspire. I want to wish you the warmest love through the holiday. I want to say the normal, Merry Christmas, but I know that is not enough. So, Warmest Love to you and your family this holiday.
    Shawna
    Millbrook, NY

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  11. Jessica D'Abruzzo Garrison NYDecember 21, 2012 at 10:30 AM

    I wonder how you find the energy to stay up so late and write these posts. I wonder if you are still on Ty time. Im planning to be in touch after the holidays, I would like to help out however you see fit. I met you for a moment at Tys wonderful tribute,the bridge lighting back in Oct. Even then in the midst of the worst grief of your life, you reminded me of a blond Julia Roberts. I told my husband Cindy was so beautiful and gracious, your beauty just comes thru from your soul. You were smiling and strong. I was blown away. As the weeks pass, I continue to be impressed by your strength. I told my husband all I want for Christmas is a donation to the Superty foundation. We even lit our tree in gold lights this year, with my sons blessing we put a Captain America figure on there. Just wanted to let you know your family are in our hearts and prayers this holiday season. My 6 yo James prays for Ty likes he is a member of our family, he never forgets. And neither will anyone who fell in love with him, thru you. God Bless you all. <3

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  12. You remain the strongest person I know of! I pray for you every day.

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  13. Keeping all theseextraordinary people, Cindy, Lou, Gavin and your family in caring and loving thought and prayer always, most especially this holiday season.
    God Bless all of you XO

    I now know why Santa’s beard Is so beautifully
    white
    It is made up of our angels And their sheer delight
    I now know why Santa Has a beautiful big heart and smile
    It is a reflection of life And all the things in it that are worthwhile
    I now know why Santa Loves to just give and give
    He has our angels in his life To allow them to
    peacefully live
    I now know why Santa Is so giving and jovial all the time
    He has the company of our angels Yes,
    Yours and Mine
    I now know why Santa Has a heart of gold
    He has our angels wrapped around him To keep
    him warm when it is cold
    I now know why even as an adult Santa holds a
    special place in my heart
    As he is the reminder that with our angels
    We never truly Are apart

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  14. Glad you got it Cindy - Audra had told me St. Baldrick's was doing something with Max and Ty - I made a donation in the name of my son's daycare and let everyone there know. A week or so ago I had sent a packet in for each teacher/assistant at the day care - it had a letter about Ty with some ideas on ways they can support pediatric cancer research and a gold ribbon. I promise to do what I can to help spread Ty's story and raise awareness for kids like Max and my friend's son Liam. There are just too many kids and families facing this beast and I am committed to helping make change.

    Every day I wish you could have a do over. It hurts my heart to think what you guys are going through. I send you love and strength and hugs - I wish it was the answer.

    I could just picture Gavin and Lou having some boy time together - how sweet it must have been. And I wish you guys would have another baby - we know its not to replace Ty, that would never be possible - but I imagine with so much love in your hearts there would be room for another beautiful Campbell :) And of course it would be nice for Gavin to have a playmate.

    I know the holidays are difficult - I wish you all some peace and that you can find yourselves getting lost in the magic of christmas, if only for a little bit. Ty would want that - and you know he's there with you all - surrounding you with his love always.

    SuperTy always and forever.

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    Replies
    1. Hi! I too think this story and Ty and his whole family is amazing and strong! Could you upload the packet you were talking about to the reply box so my school can find more ways to help? Thank you!

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  15. Ty: Your skin and bones are beautiful.
    May you have the greatest christmas by God´s side, and light up all the ones that have been able to know you or your story, specially your momy dady and brother...

    You loked like an angel, that´s why you belong to heaven. Your start will shine forever

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  16. your beautiful SuperTy really changed my life. the bravest kind of courage that he had inspires me tremendously. Ty's on my thoughts every second of every day! i've never seen a smile like his, and probly never will. Since Ty's death i've been raising awareness for Childhhod Cancer through my instagram account gold4the_children. do u have instagram? we would love to follow you.

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  17. He wants a little brother named Ty! He is such a sweetie.

    Sorry I've been kind of MIA. I wish for a do-over for you, or for you just to be happy somehow.

    Ladybug wishes,
    C

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  18. You Rock that hat! I am going to order one for myself!You write so beautifully it makes my heartache and smile at times as well. I see ladybugs now and think of Ty and your family. You all have truly touched so many lives, and hopefully we all can help to stop childhood cancers!
    Wishing you hope and moments of joy during Christmas and the New Year.

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  19. Just letting you know, that I haven't left, always here, always listening, always praying. Love You Guys

    ~Michelle Hughes North Ga.

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  20. I never feel like I can say much more than how much my heart aches for you to be missing Ty so much. His pictures and smile melt my heart every time. What a beautiful boy and a beautiful love.

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  21. I love/hate reading your posts. I smile/cry every time. You never stop amazing me. My love for Ty overwhelms me sometimes so I can only imagine what you must be feeling. I saw the St. Baldricks post on Facebook with SuperTy and SuperMax. I immediately shared it. I wish that there was more I can do to help. I wish I lived closer and could join the foundation. I can't wait for SuperTy shirts to become available for sale online. I pray for you, Lou and Gavin every night before bed while I stare at a picture of Ty I have on my iPad. I also tell him goodnight before I shut it off. I pray that this holiday season doesn't take to much of a toll on you all. I love you all so much.

    Elaine Hinkle

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  22. Do-overs would be an wonderfully awesome thing and any wish I had coming would be for you to get your do-over!! I hope every word written on this blog keeps giving you the strength to go on and accomplish what you were obviously meant to do with life...be an incredible mother to two amazing little boys and help to find a cure for childhood cancer! Not too big of a job for one person huh?? If anyone can get it done I know it will be you! Your strength, spirit and determination will get every child fighting cancer that second chance! God bless you , Lou, Gavin and of course Ty!

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  23. Oh my gosh Gavin looks so cute in that Spider man costume he does look lonely though it breaks my heart. I'm so sorry you and your family are having to go through this. I do believe though that TY is in Heaven and he sends the ladybugs telling you he is alright...As always RIP sweet boy Ty.

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  25. Hi Cindy :)

    I've been checking your blog daily for about a year now and love/hate reading the updates. This is my first post though :)

    I was meant to write to you back in November about an event that happened here in Brisbane but at the time it didn't feel right when everything was still so raw for you all :) But I went to see Coldplay live. Yellow was such a special, sweet song and all I could do was think about you, Lou, Gavin and Ty. It was held in a stadium and I could look at the stars, cry a few tears and I sung a song to Ty and it was just a beautiful, sweet moment - sounds strange as I never knew Ty personally, but I swear I could feel his presence during that song :)

    Anyway, I live in Australia and would love to know if there is anything I can do to help the foundation from here at all. Nothing is to big or small if I can help - please email me at crissy.paulger@gmail.com :)

    Lastly, I wanted to share something that I saw and instantly thought of you guys. Some family friends of mine lost their 9 year old daughter/cousin/niece last week from a freak accident at a swimming pool where she was hit in the head with the base of an umbrella and they shared this with us:

    Memories of our Little One at Christmas

    Does Heaven have a Christmas tree
    for the little girls and boys
    too far away for Santa's sleigh
    to reach with treats and toys?

    A tree that's hung with moonbeams, stars
    and real, shining angel hair
    for the precious little children
    who all live in heaven's care?

    And are you filled with wonder
    at its branches, all aglow
    with the tears of those who miss you
    on this earth, far down below?

    For we hope and pray you're playing
    with the angels, having fun
    but please don't forget, we love you
    - Happy Christmas Little One

    Merry Christmas Campbell Family!!
    And God bless you
    Carissa xx

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  26. I love the pic of Gavin and Ty...they are both soo beautiful....just like you. And my heart breaks for all of you....for you & Lou for losing a son, and for Gavin have lost a brother. I think about you all the time and pray for god to give you strength. I can't even imagine the pain that your going thru. You have to keep reminding yoourself that Ty is always with you, even though u can't see him...and that he is in a happy and beautiful place. I know my words probably don't make u feel better...but I do hope that time helps in some way. No one should ever have to bear the pain that your enduring. Prayers always.........Betty, Beacon, NY

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  27. I know Cindy that you probably feel that having a baby is so selfish because you can't replace Ty but let me tell you so etching you and Lou create the most amazing wonderful kids. It would have been so perfect if you give it a try. I'm sorry if I sound rude about it. I think about Ty every day. He became part of my life and not a day goes by that I don't want him to come back to you. Wouldn't it be amazing. Unfortunately it's not like that. Gavin picture in a spiderman costume makes me laugh and cry he needs a buddy you are right, he was robbed of his big beautiful brother. I can't stop imagining what it would have been like to get that one miracle, the miracle of Ty recovery. G-D is all mighty and he had different plans for your angel. Now he is free and flying all around us living forever in a beauty called heaven. You will meet him Cindy. Thats one guarantee that you can rely on.
    As always I wish anyone of us could have done more to keep your superTy here. Sorry we couldn't. I miss you and I love you Ty.

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  28. I know Lou was just being playful with Gavin but please bless this world with another child! You all make this earth a better place to live. I really mean that from the bottom of my heart. You were born to give and teach Love.

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  29. Your hat is great and I think you look beautiful. I want a do-over for you too. My heart hurts just trying to imagine an ounce of the pain you must feel. My boys are 5 and 3 and they are such good buddies. Brothers shouldn't be separated by cancer and someday your work will make sure that they are not. Keep fighting, Cindy, and we'll fight right along with you.

    Hugs and tears from NC.

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  30. Jennifer Russo, Lake Grove, NYDecember 22, 2012 at 11:28 AM

    I would trade in all my Christmas presents for the rest of my life (and you should know that I really love presents) for you to get a Christmas miracle and get your sweet little Ty back. My heart breaks for you.
    -Jennifer

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  31. I have written you previously....my sister's first grandchild died at the age of six. My heart breaks for your loss. Of course no child can ever ever be replaced. We pray and wish to get them back, My nephew was blessed with two more beautiful children after his son died. The beautiful boy who passed away has never, ever been forgotten. I promise you. His parents made sure to tell their children all about their brother. His photos adorn our homes, and our love for him lives on and will always. He is a part of us all always. Cindy,it certainly is no one's business if you and Lou do ever decide to welcome another child into your family, I hope you do. You have so much love to give. I hope one day Gavin has a little brother or sister he can tell all about their big brother Ty. You are in my prayers.

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  32. I'm just so deeply moved by you, your writing, your presence, your spirit, your family -- always. I see Max in Ty and Ty in Max. Always have. It's overwhelming from my end and I know from yours it's something I could never have words for. There's no repairing that hole, even with him everywhere and all around, there's still too much that's gone, so maybe you nurture and care for the hole. That's what my beautiful friend (and yours) Kristine seems to be showing me. Thank you, as always, for letting us in and keeping us all so close. You are beautiful, Momma. We will always keep Ty so very close. We will never give up -- for Ty, for McKenna, for Kai, and for all of our little fighters, like Max. Sending you tremendous love.

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  33. I'm just so deeply moved by you, your writing, your presence, your spirit, your family -- always. I see Max in Ty and Ty in Max. Always have. It's overwhelming from my end and I know from yours it's something I could never have words for. There's no repairing that hole, even with him everywhere and all around, there's still too much that's gone, so maybe you nurture and care for the hole. That's what my beautiful friend (and yours) Kristine seems to be showing me. Thank you, as always, for letting us in and keeping us all so close. You are beautiful, Momma. We will always keep Ty so very close. We will never give up -- for Ty, for McKenna, for Kai, and for all of our little fighters, like Max. Sending you tremendous love.

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  34. You are gorgeous, btw. I love seeing you in that fedora. Thank you for posting! <3

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  35. That picture of Gavin is SO adorable, but yes he does look like he's missing his best friend. You are an amazing mommy and will help Gavin heal too. Your breakdowns are good for your release of your loss. There's no words for your grief but I pray each day for you, Lou and Gavin that each day gets a little easier especially during this beautiful holiday season where Ty deserves to be snuggled up with you around the Christmas tree. I think your Christmas tree will shine extra bright this year...Ty will make sure of it! God Bless. xoxo, Sharon

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  36. God bless you and your family. I am amazed at your ability to write such truth and share your heart through each word. You truely have a gift. You inspire me to be a better mother. I am so sorry for your loss. I am praying for you, Lou and Gavin.

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  37. Sending my love from Dubai. You are an absolute inspiration. My thoughts and prayers are with you and your loving family.

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  38. Morning,

    Thank you for continuing to share Ty's & your family's courageous journey.

    My continued thoughts & prayers are with you & your family.

    God Bless.

    - Rob Swan

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  39. You continue to amaze me. You inspire us all, breakdown, hit the wheel...and then take a deep breathe. xoxo from Fishkill tonight.

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  40. Thinking of you Cindy and Lou during tomorrow and Christmas. Share in Gavin's excitment and the magic the day brings and know Ty will be there with you. I pray you find strength and peace this week. Maybe find a quiet place and talk to Ty on Christmas morning. Merry Christmas !

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  41. Cindy & Lou,

    There are no words. I don't know if you ever will stop crying. Your love for Ty is incredible and your energy and drive to change the world is amazing. You will change the face of Pediatric Cancer. The both of you, I know it.

    (((Hugs)))

    Joy Marielle
    Baltimore, MD

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  42. Cindy
    I am sorry I haven't stopped by the foundation to drop off the donation from the msa families.I will after the new year . Please contact me regarding helping out with project . Jeanneq2@Verizon.net
    May god bless you .
    My family prays for your family everynight .

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  43. I haven't read your page in a while. But I thought of you tonight. I even mentioned you in my blog. I'm a new one, so its strange. I don't have a prolific story to tell myself. I just live and surround myself with the goodness of my children. Again, I come here and I cry. You are such a strong woman. You amaze me.

    Much love to you and your family,

    Sarah

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