Tuesday, February 26, 2013

amazing is an understatement

"Maaa-Meeee?" Gavin said waking me up this morning.
"I wuv you."
"Oh, thank you.  I love you, too."
"I wuv you more!"  Big smiles all around.  What a way to start the day, right?

A new donor gave some very kind feedback on the foundation website today.  "He must have been one amazing little boy."  When I read that, all I could do was smile and think, "amazing is an understatement."  It makes me so proud to hear that kind of feedback.  To know that it is obvious how special my angel baby was and is. 

I know I don't need to remind you about his magnetic smile, but I can't resist.  Here he is, waiting for Max and Ruby to take the stage (yes, there was a live show that toured in 2011, we even have the soundtrack and I can sing every word because Ty loved it so much).  This was one of Ty's greatest days.  He was pure beauty and happiness through and through.  "Special" doesn't do him justice, either.  He is greater than that.  I am so inspired by his strength, his perseverance, his courage, his love for life and his unending smile despite it all.  He suffered beyond belief.  He hurt more than he didn't for over two years.  His little body was literally destroyed, but you wouldn't know it when you saw him smile.  It could make warm rosy cheeks emerge on the coldest, grumpiest of grumps. 

Gavin fell asleep in the late afternoon the other day.  He passed out right on top of our ottoman with his shoes still on.  Inside the ottoman we store our throw blankets, so I had to move him to open it.  When I did, he awoke very cranky and I told him not to worry, that I was just getting him his nana blankie.  I didn't see it in there and immediately remembered it was Ty's nana blankie that I was looking for, not Gavin's.  Of course Nana has knitted blankets for Gavin, too, but he really doesn't have one that he connects with.  With that, I almost panicked when I couldn't recall whether or not we cremated Ty with his favorite blue blankie.  I've been getting so worked up lately and my mind is playing tricks on me.  I can't even believe it was a question in my mind!  Of course I remembered soon after.  We did not cremate him with nana blankie because we wanted to always be able to hold it and smell it and think of Ty.  Instead, we covered him with the pure white nana blankie that she knitted for his baptism before he was even born.  I haven't had the courage to snuggle with Ty's nana blankie since I packed it away safely.  I miss seeing that soft, blue blanket all over the house and in the backseat of my car. 

I had a similar panic recently when I saw a photo of Ty wearing his slippers. They are gray sock/slippers that he wore constantly since he couldn't walk. He got compliments on them wherever we went, too. I left Gavin and ran upstairs to Ty's Captain America room immediately. I opened his closet (which is always painful for me, because it is filled with the pillows on which he last rested his head. The sheets. The batman blanket that we used in his stroller. The towels we used after we last bathed his beautiful body. I don't ever take these items out to touch them, but I might rest my hand on the pillows or towels for a moment. It's just too painful.

I stood there with the doors open and thought about the day we lost Ty, letting the weight of my loss and the magnitude of my grief consume me for a while. I looked up, and there they were. Next to his "The Who" tee, his red fedora, his Reefs and his cut-off shorts. I turned them inside out and buried my nose in the slipper to catch any shred of a scent - even his stinky feet smell is the greatest smell I could ever imagine. It was there, ever so slightly, and I am so grateful for that.  I also discovered that there is an outline on the suede bottoms where they had gotten dirty during the days where he could walk with assistance. I can see the shape of his footprint, his little toes. I am so glad I found them and had a chance to cry over him in peace (and not in my car for a change).

I've been doing this more often lately.  Gasping and panicking over the thought that I may have misplaced something very special that once belonged to Ty.  I think it is because his physical presence is slowly disappearing from this house.  The bulletin board is getting covered with more and more pieces of new artwork that Gavin brings home from school.  Gavin is growing out of the clothes that Ty used to wear, too, and I'm buying all new clothes just for him.  The pantry is filled with less and less candy and snacks for Ty.  Stuff like that. 

I have been doing okay.  I found a small sparkley star sticker on the floor in the toy room today.  It was one that Ty picked out for Gavin after he completed one of his daily oxygen treatments.  He always picked out a blue one for himself, another one for me (any random color) and for Gavin a red or green one.  It was a ritual that he never tired of.  I love finding his reminders at very unexpected times like that.  It is painful to imagine that they will get fewer and further in-between as time goes on but I know that is inevitable. 

Yesterday the Taylor Swift song, "Ronan" was going through my head all morning.  I sang it outloud with a quiver in my voice and tears in my eyes whenever I was alone.  Then, that afternoon, I played the Pink song "Beam me up" about a dozen times on my phone and cried my heart out.  It is just so incredibly powerful.  It makes me feel at peace about Ty, but it certainly doesn't help me miss him any less.  Nothing can do that, and that's okay.  I don't ever ever ever want to stop missing him.  I don't ever want to feel all that I feel for him any less.  I keep busy, I am living my life, and I am okay doing it this way.  If I have to pull over to get through a song on the radio once in a while, that's okay with me because stopping what I'm doing and thinking of Ty is so important.  He will continue to do great things in this world, and I hope to be a vehicle for some of those great things.  I want to make him proud by honoring him in any way I can. 

I have mentioned a bunch of times that Lou and I read one entry from our Project Treasure box each night.  We were both happily surprised by tonight's letter.  I am pasting a quick excerpt below because it is such an incredible example of how far and deep his story has traveled:
"...I am the CEO of Project Treasure.  It just so happens that I have also followed Ty's story for the past year.  I have prayed for Ty, cried for Ty, and smiled many times at the goodness you shared through his blog.... so when I saw your name come through on a Project Treasure order, it brought me so much joy.  I hope it's something that encourages and comforts you."

It is.  Thank you :)


  1. I remember when I had my baby and he was so small and early, the Dr's weren't sure if he'd make it or not and I used to bring home his blanket that he was swaddled in from the hospital and just hold it to my face and smell it, it gave me so much comfort. I pray one day you'll be able to touch and smell Ty's things and have some comfort. Always wishing you and your family nothing but love. Will always be praying for the Campbell's ❤❤❤❤

  2. Always praying for you & Ty, I pray for you to have
    Peace in your Heart, Cindy. I am glad that you have
    Ty's precious blankies to cherish. He is such a
    Beautiful Boy, still bringing tears to my eyes &
    Also making me a better Mommy ! Thank You for Sharing.
    I pray you have a Peaceful sleep tonight..

  3. Cindy,

    I still get signs from Ty, I hope he never stops! Just recently, my sister's brother in law was sick in the hospital, my sister, husband and his family were there day after day emotionally drained with dread and tears every day not knowing if he was going to pull through and he was suffering so much. I prayed to God that he heals him completely or takes him to Heaven to heal his pain. I asked Ty if he goes to Heaven to please go greet him.

    My sister called me to update me, I ran out of the room and into my dining room so that I can hear her. She was crying, telling me I don't know if he's going to make it or not, I walked over to my window, right at that very moment a lady bug climbed on to the side sill of my window. I knew immediately Ty was telling me he was going to him, which means I knew he would pass on. He did. I felt alot of comfort knowing that Ty was going to meet him. This man was our age, and he was sooo good to children, all his neices and nephews adored him, it's fitting that Ty would go meet him, it makes me feel better.
    I love Ty so much!

    Rita xxox

  4. I read your blog every day. Not out of some voyeuristic behaviour, but rather for inspiration. Inspiration offered through your words and thoughts, but mostly related through your son's life. His joy for life, and his brave refusal to give up. As an adult, myself going through my own trials, the thought that a little boy's story, your Ty's story can give example of fortitude to me (and I am sure many others) is both beautiful and heart warming. Your Ty is an emblem of courage. His pure innocence and strength amazingly gives me hope and moreover a genuine love for life, and the will to fight for it. Thanks Cindy

  5. There is a peace coming through in your blog that has not been there for quite awhile - and I would not expect it to. This peace, though, is one of the most inspiring things I can think of. It is a mark of your strength and determination. It is a mark of knowing how fortunate you are to have had Ty for even one day. It is a mark of how amazing your family is and shows how dedicated you are to this cause of trying to make it better for the next child.

    I simply love you as I love Ty. You and your family make this world a better place.

    As always, I am here for you. You all remain in my thoughts and prayers.


  6. Hi Cindy,

    It's Diana Schimmel, I've been thinking about you guys lately and I just took the time to read some blogs that I've missed out on. I can't imagine how life has been. To this day, 5 years later, I cry over songs and thoughts about my mom. But yes, they are blessings in disguise to keep the memories flowing. Embrace those moments. Just two days ago our dog Chloe passed away and this brought out many emotions in Griffen and one thing that he touched upon was that this is making him think of Ty and how sad he feels for you and Lou because it hurts to lose someone. I want you to know that no matter how big or small, Ty has touched their lives in so many ways and they don't forget. We have been all over the place with life but we never stop thinking about all of you. I would like to get together in April or May if you are available? We miss you guys.

  7. Every time I get stressed or annoyed, I look at my precious 4 year old and think of Ty. Suddenly things are back in perspective. I'm sorry to use your pain to help keep my mind where it needs to be, but I don't want to take anything for granted. Ever. He is always allowed to jump in puddles, even when wearing nice shoes. I'm sorry your baby isn't here to do the same, but we honor him any way we can.

  8. I was working with a few of my students the other day and a picture of a puddle was in the story we were reading. "that's a muddy puddle " he exclaimed. Hummm wonder who I thought about.

  9. I am having such a hard time looking at Ty smiling pictures knowing that he is not here. This boy sure knew how to fight and he fought with a smi,e every step of the way. No pain ever knocked his ability to show his most beautiful peaceful smile. He is the only reason why am a forever changed person.

  10. ((Hugs)) for you Cindy...can't imagine anything harder in this life than losing a child. Ty will always be in our hearts.
    Thanks for sharing Project Treasure - what a wonderful way to encourage and comfort people!

  11. Cindy,
    I read your blog after being directed to it by an old high school friend, Kim Martin, who is running the marathon in honor of your son. I share a birthday with Ty and my first son was born October 11th, 2007, almost the exact same age as Ty. Your story has touched me deeply and so reminds me to put things in perspective and cherish every single moment. You and your family are amazing - it is no surprise to me where Ty got his great energy and positive attitude from! Please keep writing and know there are so many people wishing you comfort in the memories and hope through your future projects. All my love and the best to you!

  12. Write more, thats all I have to say. Literally, it
    seems as though you relied on the video to make your
    point. You definitely know what youre talking about, why waste your intelligence
    on just posting videos to your weblog when you could be giving us something informative to read?

    Visit my webpage colored huggies diapers

  13. Hi Cindy!
    I haven't been online in a while, so I had to go back and read your blog. I think of Ty every day, even though I never actually met him. I have no doubt you are affecting millions. :) I just wanted to tell you that I sent the Senator of Pa a letter. There were 3 officials that I sent it to. I hope those budget cuts don't happen with Pediatric Cancer Research. <3 Liz Collins
    God Bless you and your family. I am always always praying for you all.

  14. Cindy, what would Ty have said to you if you apologized to him for being grumpy? If you know the answer, he has forgiven you. If you know the answer, you guys had the kind of bond that doesn't get broken over a momentary "grouchy" moment.

    Please do me a favor and I know this sounds crazy. Listen to the song "I Will Wait" by Mumford and Sons. When you listen, think of it as a song that Ty has written to you about waiting for you up in Heaven.

    I read your blog earlier and was driving, tearful, wishing I could take away your pain. The songs came on and I had a revelation that I needed to tell you to listen to it from the context of Ty writing it to you (no, I have not been drinking! :)

    Hugs, Beckee

  15. my heart is breaking all over again for you guys - I never feel I have words that can offer any comfort, but I know in my heart that Ty knows how much you love him that he's always known and will always know. I am sending you all love, hugs and strength.

  16. Grеat work! That is the kind of information thаt aгe supposed to be shareԁ around the іnternet.
    Shame on Google for not рositioning this publish higher!
    Ϲοmе οn over аnd seеk aԁvice frοm my site .
    Thanks =)

    Fеel fгee to ѵisit my web blog; amazon

  17. aomneapvj

    Also visit my blog same day loans

  18. Thanks for sharing the information! Nice post <3

    TRUYEN-HAY-LAM.BLOGSPOT.COM - Nơi tổng hợp truyện hay nhất, blog có nhiều thể loại cực hấp dẫn như: tuyển tập truyện ngắn về tình yêu, hay truyen cuoi cực vui nhộn, nhung dieu thu vi, chuyen la, bộ ảnh hài hước về ảnh chế vui hay truyện tranh hài hước được tổng hợp một cách chọn lọc!

    Đặc biệt, xem 12 cung sao cực hay! Hay làm đẹp cùng tạp chí đẹp online! Chúc các bạn đọc truyện vui vẻ!

    Yến sào là một trong những món ăn bổ dưỡng và quý giá, giúp tăng cường sức khỏe, tỉnh táo tinh thần, tăng cường trí nhớ, người suy nhược nếu dùng thường xuyên sẽ đẹp da, chống lão hóa, tăng tuổi thọ,... Yến sào Bảo Gia đang có chương trình yến sào khuyến mãi với nhiều ưu đãi hấp dẫn!

    Các bạn xem cách làm thêm cách làm các món ăn: thịt bò xào hoa thiên lý cực ngon, cách làm gà chiên bơ cực hấp dẫn, cách làm sushi cực đơn giản, hay cách làm gà chiên giòn cực ngon, món thịt gà kho gừng cực hấp dẫn!