Sunday, April 28, 2013

Back home

Our time on the West Coast was magical.  Our unending thanks to our friends for allowing us such a wonderful getaway.  The beach in San Diego was beautiful, I caught up with some of my best friends out there, I got to give a long-overdue hug to my friend Kristine who also lost her daughter to a brain tumor, and I got lots of special time with our birthday boy.  On our last day, just minutes before leaving for the airport, we were also blessed with a show from dozens of dolphins playing in the waves.  It was as if Ty was giving us one last smile before our departure. 

While we were away, I watched Gavin run back and forth in the ocean.  Memories of Ty at the beach came rushing in.  Times like this, exactly (click here for video of baby Ty at the beach).  I watched long and hard and imagined Ty, right there next to Gavin, a big boy jumping in the waves and laughing wildly :)  It even looks like those could be Ty's footprints next to Gavin in this photo.


Today I realized there is a real reason why Lou and I have been traveling so much.  My house is a very sad place for us to be.  After being gone for a week of R&R (which was long overdue and truly wonderful) I was anxious to get home.  Now that I’m here I am – once again – slapped in the face with reality.  Maybe we just need to be here and grieve, or maybe escaping is good.  I don’t know the answer.  I just know that our pain will never ever go away, but we are slowly learning to live with it and to smile again despite the grief.  Lou and I want to be happy again.  We talked tonight about how we are making a conscious decision, from today forward, to try and change our lives so we can be happier because that is what we learned from Ty.  To try and embrace and to love life again, in his honor.  To stop fighting over stupid little things.  To remember the bigger picture.  To love, love, love and love more.  Slowly, we have vowed to try our best to make this shift. 

I just realized that I always choose to listen to depressing music lately.  I should try to make a conscious effort not to do that, too.  Lou took Gavin to Nana’s house for dinner tonight and I’m here alone, supposed to be unpacking.  Instead I’m listening to Nirvana Unplugged, singing every song, as I walk from room to room in my house opening drawers and cabinets and looking at every little thing that has anything to do with Ty.  Anything he once wore, touched, played with, looked at.  Things I bought for him after he died just because he would have loved them so much (like the Robot notepad, a package of Razzles, a rainbow flashlight).  Maybe not a healthy way to be spending my evening, but probably very necessary.  It’s all part of the process, I think.  I missed having his things all around me while we were away, yet it makes me sad to be around them.  What a sad cycle this is, but it's all part of the process, I think. 

There are three places I spent the most time in tonight.  First, the kitchen pantry.  Ty’s med drawers are still in there.  They aren’t nearly as full as they used to be, but there are still so many pieces of Ty.  The nebulizer that we were provided with when we left the hospital for the last time.  Then there are the spare g-tube attachments; the mediport change kits; the nail clippers I used on his perfect little hands and feet for years.  There is a bottle of expired allergy medicine that was prescribed to him just before he was diagnosed in 2010.  I don’t know why I don’t throw it away.  I look at it all the time and think, this is a normal medication that should have Ty’s name on the bottle.  Not the morphine, the oxycodone, the cytoxin or etoposide that was soon to become part of our medicine collection. 

The folder with the contact information for his Hospice team is still there, which includes educational brochures on dying and grief.  Although I understand the good intentions, I find them insulting just because I am Ty’s mom and I still don’t want to accept that his death was a normal part of life.  All of the literature seems to be directed toward an older audience.  Information that makes sense for my mom when she was caring for Granny last year – but not for a mother and her five-year old son.  Ty’s death was unfair and unnatural.  With Granny, as much as we love and miss her, we can accept that it was “time.”  You simply can’t tell yourself that when you are filled with hope for a full life ahead despite the odds.  A future.  Ty didn’t have a chance to live before he died, and it was my job to give him that future.  I will forever regret not being able to do that.     

I stand in the pantry, I look at all of these things, and I feel like the greatest failure of all. We tried so damn hard.  We fought.  We promised Ty that he was strong and brave.  I just want him back to take care of him.  I want to change the dressing on his g-tube.  To give him a gentle bath and kiss his scars as I dry him off.  I used to love that so much.  To get him so clean and comfy.  I miss brushing his teeth and running my fingers through his hair – always keeping in mind his shunt and his never-ending stitches.  Lou was saying just this morning that he ran his fingers through Gavin’s hair and the absence of a shunt reminded him of all the unfairness Ty endured.  How he looks at pictures of baby Ty and simply can’t imagine that this perfect little baby of ours got cancer and died. 


Naturally, I was sucked right into visiting Ty’s Captain America bedroom next (the one he never slept in, but loved just the same).  I missed being there after being gone for a week.  It is pretty much a shrine to our SuperTy and all the things that made him proud.  I opened his drawers.  I thumbed through his favorite books.  I looked at his artwork from preschool and I kissed his arm and foot braces.  I laid in his bed and cried.  I put his stuffed animals to my nose, although they don’t smell like him anymore it is still comforting to know that he was one nuzzling with the same doll. 
I put a few new framed pictures of him out on his nightstand.  We took home some beautiful pictures from his memorial and I wanted to be able to see them every day.  Including this one.  Me and my boys.  I am one lucky mama. 


Then there’s Gavin’s room.  I opened his closet and stared.  We used the same closet for both Gavin and Ty since we moved here, and there are still so many doubles hanging there.  Two matching bathrobes.  Two gray blazers that they both wore last Easter.  Two Calvin Klein dress shirts and matching blue ties.  The matching Christmas tees that have a picture of a bulldog with a red Rudolf nose and antlers.  There are also the clothes that were once Ty’s, like the Spiderman hoodie that Spiderman himself gave to Ty during our Make-A-Wish trip.  The brown sweater that he always looked so handsome in.  The Spiderman t-shirt that says “it’s web slinging time” when you press a button – he loved to show that off to his teacher, Brian, at Blythedale.  He would call out, in a whisper, “Bwyy-annnn.”  I can hear his weak little voice now.  I love these clothes and I know Gavin would, too, but I don’t like to dress him in any of them.  Sometimes it’s just too hard to look at Gavin wearing those things. 

That's all for tonight.  Back to work tomorrow!  I will share updates on the foundation this week.  In the meantime, we are so grateful for the Hudson Valley Pizza Fest today, thanks for those who supported Ty's foundation at this fun event.  And thank you so much to our friends at Animal Kingdom who hosted a great PJ Day fundraiser while we were away!  So sorry we missed it.  Next weekend there is a Star Wars party at Jumpin' Jakes and a Horse Ride for Ty at Putnam County Park.  Lots of great things on the horizon, and more updates on an exclusive charitable clothing line to come!  Thank you so much for your support. 

22 comments:

  1. Cindy, you just say what you are feeling and I think that's what makes me come back, you are so real! I cant imagine the grief, losing my mom was awful, but I cant imagine a child. But you are right, in Ty fashion be happy, that's what he wants! Love and prayers always!! I love the website! Its perfect! Terri

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  2. I saw the new muddy puddles project video today and it is just perfect. What a precious gift Ty was.

    Stay strong. Know that there are other little Ty's out there that are still fighting, and so many more to come that will benefit so much from this awareness that you are raising through your blog and through your beautiful little boy. Know that although the days and years seem so long without him, they are really just a blink of an eye compared to the rest of eternity that you will spend with him in heaven.

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  3. I'm just so sad for you and for all of us...it isn't fair and there is nothing else to say on that.
    I loved the pictures...thanks for share.

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  4. I cried...(again) when I read this post...how you kissed his arm and foot braces, and smelled his stuff animals. Its just soo sad. I too sometimes smell my son's 'bee' when he's at school. (he just turned 7 and sometimes when I look at him, he resembles your Ty) I can't even imagine what your going thru and my heart breaks for you, Lou and Gavin.
    Betty Warren from Beacon NY

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  5. As you said - it's a process...you'll know when upbeat music is better than mellow music, when trying to be happy is better than beting sad, when moving forward is better than standing still....it will come in time...as you seem to be doing - give yourself time to be sad and to live...

    as you have said - it will never get better - but you will learn how to enjoy other things in life...but you will never not be broken hearted and beyond....no words.....

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  6. it takes a very strong person to choose happiness while your hear is breaking. i read your post and i follow you thru your house and i imagine ty room, his cloth his toys, everything in doubles just like i buy for my two boys awho are 13 months apart. how can it be natural to outlive our child?
    as a mom these are the things that seem so messed up
    1. live longer than your baby
    2. to no be able to kiss booboos and make the pain go away
    3. to have your child on hospice care
    4. to dress up your dead baby and read to him
    5. to have your baby on the stand as ashes
    6. to wish to die soon enough to see him again
    7. to raise his little brother as the only child. that one stubs thru the heart
    8. to feel guilty you havent done enough, or maybe did something wrong otherwise maybe he would have made it
    9. to just live while your child isnt living
    i am sure your list is so long and so messed up. its all so unreal. the fact is that precious baby boy had to died and suffered so much thru his short life. i just learned one thing that there must be a real wonderful beautiful life out there because i dont see the point of this life unless its to go to the world of beautiful eternity where Ty is. I love you baby boy.

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  7. Cindy, those are absolutely beautiful pictures! Thanks for sharing them.

    Hang in there...

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  8. I can completely relate to every word, every feeling. After loosing my niece, seeing my sister learning to function again, it is not 'normal'. It is our new normal. I recently read the saying 'cherish yesterday, dream of tomorrow, live today'. I know people do not know what to say, but it all happens for a reason was crushing. My goal, and my wish for your family, strength and moments of peace. The live today sometimes means functioning for the rest of our family. My sister made a quilt of Kate's clothes. Maybe creating something...? There are no words or advice. But I am thinking of you and yours.

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  9. Thanks for sharing such sweet pictures of Ty ... hard to believe that healthy boy is not here anymore. Last week I went back to your older posts and re-read them, before and around the time Ty passed, and I couldn't get through them without crying. It is just so sad/unfair/heartbreaking, and can't imagine how hard it is for you to process the grief. I think about you and your family every day.

    Glad you were all able to get away for a bit and create some happy moments. The ocean will do it every time! No wonder Ty loved it so much.

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  10. Always thinking of Ty. Not a day goes by that your beautiful boy isnt on my mind. He has a piece of my heart forever. I want him back for you more than anything in this world... it is just so unfair. I pray for strength for you to get through each day and for Ty to visit you in your dreams. My Nana recently passed and when I finally had her in my dreams it was the most amazing feeling, seeing and speaking with her. I woke up still feeling her hug and her warm kiss on my cheek. I cried so many happy tears and I want that for you. Ty will visit you soon, I am sure of it and it will be beautiful. Please let us know when he does

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  11. I, too, saw the Muddy Puddles video and it was absolutely beautiful, excellent job on that. So heartbreaking to see too. I love seeing "new" clips and pictures of Ty. I love his little voice too, what a doll.

    It really does look like Ty's footprints right next to Gaga, I think that they are his...

    Also, I love the pic of you and your beautiful babies, Gavin looks just like Ty as a baby. They really resemble each other alot.

    Love you all so much Campbell's!
    Missing sweet SuperTy every day.

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  12. Cindy, Thank you for always sharing your most raw and honest thoughts with the world through this blog. You are so special. Ty is so special because he takes after everyone in his family. Through Ty you remind us always what life is about whether that be incredibly difficult and sad to down right funny. The way you update us on all of the details from your day is just so amazing. We all want to know how you are doing and for you to share your deepest feelings with strangers at such a raw time is so selfless I wish I could shout from the roof tops for more people like you!!!

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  13. Cindy & Lou,

    I haven't been here often but I read the posts via my phone. I have no excuse, but I swear to goodness, I think of you every day.

    You are an incredible mother and Lou an incredible father. You two did EVERYTHING you could have done for Ty and you are NOT a failure! I only wish to be the woman you are. I try daily, but I know I could never achieve such greatness. It is impossible and I have accepted that, but you still are my motivation when I am about to lose my mind with my children.

    I love Ty and all of you although I have yet to meet you and never was graced with the opportunity to meet Ty. I think about him everyday and I promise you that in a different way, maybe not too conventional, I will help this fight!

    You are amazing, both of you!

    Joy Marielle
    Baltimore MD

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    1. Always so happy to hear from you, Joy! All of my love to you :)

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  14. Breaks my heart to hear you doubt yourself. You did everything humanly possible for Ty. You still are! Keeping him so very alive in all of our hearts and minds. I loved the video, I watched it over and over. Best birthday present ever!

    Thank you for sharing your life with us. You are so real and honest, beautiful and smart, loving and determined. I respect you more than I have words to say. You are going to continue to help SuperTy do amazing things.

    All my love ALWAYS,

    Elaine

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  15. Julie and Casey from MNApril 29, 2013 at 11:16 PM

    Muddle puddle weekend in MN as the sun was out and the snow melted. Thanks for the post

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  16. Cindy, I don't know you personally but I am a cousin of your friends Kristen and Brian and have followed your posts. You express your thoughts and love for Ty so beautifully. A week ago I was in Arizona and while shopping randomly saw a beautiful beaded ladybug bag. :) I thought of Ty and said a special prayer for your family.

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  17. http://www.youtube.com/watch?v=9Xtnt3xmu4I

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  18. I just wanted to tell you I was in southern california at the beach, thinking of TY and your memorial to him that I read about before I left. As I was looking at the ocean and thinking about it, I looked down and saw a lady bug! At the beach! I do believe it was TY saying hello because I was thinking about your family. I thought you would like to hear that...He is all around! :)

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  19. Your Family is always in my thoughts, Thank you for helping me be a better parent.

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  20. Hi Cindy and Lou,
    The celebration of life for Ty Louis Campell was so beautiful. Beautiful beyond words.

    Lov, Emily



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