Sunday, November 18, 2012

Weekend update

"Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy." (thanks for this, Kathleen).

Tonight was a beautiful night and the sky was filled to the brim with stars.  I couldn't stop thinking about Ty.  I've been so sad, which I know is normal, but Lou and I keep busy which I think helps us to remain as balanced as possible given the circumstances.

When I gave Gavin his bath tonight, my pain caught up with me.  As I washed his hair, I did something I've never done before.  I concentrated on imagining that I was washing Ty's hair, instead.  Normally I would briskly rub Gavin's head and rush to rinse him so he could get back to playing, but tonight I lathered the soap through his curls with gentle swirls while he was acting out something with his toys.  I let my hands linger and I visualized where Ty's shunt was, where all of his scars were within his scalp, I heard his voice telling me to be careful (he was always apprehensive about getting water in his ears or eyes), and I saw his face instead of Gavin's.  It was so real and so painful.  I became completely lost in my memories of Ty's body.  How his soft feet felt cupped in my hands, how his fingers felt curled around mine, how his head was bumpy behind his ear where the wire mesh "plates" were in place under his skin, how I needed to clean his belly tube with extra care, how his scar on his belly was so crooked from being opened in the same spot several times (shunt surgeries).  I could go on and on about every little detail right down to the exact way in which the adorable nail grew on his pinkie toe.  As much as I cried, and as hard as it was, I'm so glad I remembered everything so vividly.  I was so afraid that I was already forgetting.  I don't want to forget a single thing about this angel baby.

Baby Ty after a nice, warm bath - 4 months old

We had a nice weekend with some of our best friends.  They are so good to us, they surprised us and treated us to a fun-filled weekend away.  We all spent Saturday - Sunday in the Poconos at The Great Wolfe Lodge and Gavin had the best time.  Of course, spending a weekend at a place like that is all for the kids, but it's not the type of thing we ever would have been able to do while Ty was sick or disabled.  We were happy to bring Gavin there and to spend time with our friends.  We had a lot of fun in the waterpark with Gavin, and just watching him playing all of the games available.  He liked the pool and the slides, but enjoyed the glorified "Chuck E. Cheese" type of arcade the best.  Chuck E Cheese was one of Ty's favorite places in the world and I was so very aware of his absence the entire time.  Even though we rarely took him there (for soooo many reasons, germs being the biggest one), every time he saw a commercial for Chuck E. Cheese he would yell across the room "I GO THERE!  I WUB THAT!"  I hope Gavin felt Ty's presence while he was earning those tickets and riding in the ice cream truck :)  How I wish they could have been enjoying it together like I always imagined they would some day. 

Gavin and Luke had a great time.  I love to see him out with friends, having fun, doing normal things that kids do.  It was his idea, of course, to wear the costumes that night.  Not as normal, but so cute regardless.  Gavin wears his Spiderman costume 12 hours a day (at a minimum) except for when he's at school or sleeping.  Look how cute they look on this ride.  It was a rollercoaster simulation for grown-ups and they were SO SMALL in those seats, but they loved it!!



Always missing Ty.  I hope to see him in my dreams soon.  Thank you all so much for your kind words and endless support. 

57 comments:

  1. Glad you guys got out for the weekend. It's always good to get away! Wishing you many more good times!
    Jennifer, Illinois

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  2. Big hugs to you Cindy! Xoxo Ty is so very missed!

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    1. Yes, we miss Ty right with you! He is a very special boy!
      Hugs to darling little Gavin whose love of superheroes is a great tribute to SuperTy.

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  3. You never fail to bring me to tears or inspire me to be a better mother. I heard once that a Native American tribe has two different words for death -- one for when one's physical body passed and one for when the last person who remembered or was touched by that person. The idea is that we carry people with us in our hearts and by doing so they are still very much present and alive. Ty has touched so many people, his presence will continue far into the future. But no one will carry him quite like you. You are his mama and whereever you go, he goes. Once upon a time you were one and so you are again. I pray for you often.

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    1. Love this thought

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    2. That is such a beautiful truth. They were wonderful sentiments you shared with CIndy and they touched my heart as well. Thank you.

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  4. God bless you Cindy . You are a great person . Ty is so missed . My little one prays for you and Ty every night he never forgets .

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  5. Cindy you have made me such a better mother . I thank you for that
    .Jeanne

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  6. God bless u. I would have loved to have come give u a hug at great wolf it's only few min away from me. I will continue to follow ur story always

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  7. Although I don't know what it feels like to lose a child, I am wowed how I feel so taken in with the way she writes this blog and how it makes me feel like I can feel her emotions. I have never met this family face to face but there's almost a real imagination that occurs in my mind when reading each blog posting. I hope I am making sense...I am amazed at the strength of this mom. Simply amazed.

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  8. children do see angels and i am sure gavin sees ty as a captain america super hero out with him and his friends on this night... May God Bless you..my children love the wolf ... what a great place to create memories for gavan I am so sorry Ty wasnt there..keep strong you are beautiful parents!

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  9. I'm going to say this at the risk of sounding completely crazy. I have a 15 month old and every night I kiss him goodnight twice, once for him and then I close my eyes and kiss Ty goodnight through him. I know you must think I'm completely looney but I understand you "bathing" Ty through Gavin. I hope he visits in your dreams!

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    1. You are not alone I have done that with my four year old too! Kisses for him and for Ty until he tells me to stop it lol. Xoxo

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  10. Cindy - I obsessively check for updates on how you are. I lose my breath a little before every new post. So many are with you. So many love and miss Ty. Thank you for sharing your beautiful boy with us. He is changing lives and we are eternally grateful.

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  11. Wow.. Ty had amazing eyes from birth!! Don't worry Ty will come to you in your dreams it just takes time to get settled in heaven.. When my Dad died (and he was my world!!!) he came to me and looked so wonderful!! He simply said " I'm here" and he just stood there smiling.. I awoke not knowing if it was real, a dream..reality escaped me for a second and I wasn't sure if he had died but then it was WONDERFUL to see him, feel his presence.. When I told Mom she said aaahhhh ok good he's in heaven.. Evidently, that's what they do.. All I know is that heaven must be wonderful because no one has ever come back to tell us otherwise..I'm glad you got away for the weekend..you need it even though you would rather crawl up in a ball in bed and cry instead..having Gavin helps but I'm sure Ty is helping you too.. Be well.. Prayers for you always...

    Gabrielle

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    1. I meant " probably" want to crawl in bed ; )

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  12. It sounds like Ty visited you for bath time :) I do hope he visits again in your dreams, for a more peaceful feeling. I love reading the different ways he comes to you! Sweet dreams...

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  13. Last night my family was watching a movie and at the very end the scenes were set to music. The song began and it was Israel Kamakawiwo╩╗ole singing "Somewhere Over the Rainbow" and while I instantly thought of the video of Ty, I didn't say a word. Suddenly my 12 year old Emma turned to me and said this is making me think of Ty! My 9 year old Faith then said "THAT is how I know this song, it was on Ty's video!" I smiled and told them that I thought it was extra special that we would hear that song because it was the 1 month anniversary of Ty going to heaven!

    I just wanted to share that with you. I hope you know that Ty and your family are prayed for every day. I don't know how to explain the way a little boy who we never met could have such an impact on our lives...but he has and I think it is a gift from God. Take Care!

    The Stewart Family
    Nebraska

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  14. Cindy you and your family are always in my prayers. YOU are an Amazing person. xo

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  15. Oh Cindy how I imagine your pain. I can't separate my boys for half an hour because they do everything together. I can't imagine doing something with one when the other one can't enjoy it. And you have to do that and do that for the rest of your life and you must enjoy it for Gavin sake even when you want to cry. It's unreal it's hard it's something that I can't wrap my mind around. To say that you are the strongest most amazing mom would be saying nothing. I admire you because I know I would be laying down in a puddle of tears and nothing would snap me out of it. But I know that Ty has reached his perfe t eternity and I know that while you are suffering he is no longer suffering he is in a perfect state of existence only the purse of angels experience. It's you who is now left sad and have to imagine your child scars when you close your eyes. One thing I know is that you will be together. This is the end of all of us, our souls meet and last to eternity. Please do all the amazing things you do for Ty because he is watching and he is enjoying them because he is in you around you he is everywhere. And Gavin is so funny and beautiful. You are doing amazing job keeping his life happy and normal. And of course Lou does too. He is that strong force behind you that feeds you strength when you need it most. I wish that you continue to live your life with less pain and more smiles as you remember Ty. He was is and will always be the most amazing little boy who lived on this planet and his legacy is bigger than you can ever imagine. He was G-D sent child who came to this place to change the world and he is doing that on a huge scale. You are the luckiest woman to be his mama. G-D bless you Cindy Lou and Gavin.

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  16. May God continue to comfort you always. Im always praying and thinking about your family. Keep shining bright in heaven Ty : )

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  17. While you remember so vividly, you should have a sketch artist do a full body portrait of your baby boy, that way you'll never have to worry about forgetting. God bless you cambell family

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  18. Wow...the love, the adoration, the grief you have for your gorgeous baby boy radiates from the computer screen, i cry every time i read one of your posts, they are so full of every kind of emotion, i can actually feel the pain you are in and no mother on earth should have to go through it, life is so unfair, big, big hugs to you and your family from Birmingham, England. F**K YOU CANCER!!!

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  19. I thought so much about you all through the weekend. You have amazing friends to care so much to try to steal you away from the pain. Allow yourself to feel life again Cindy. You will feel guilty for doing so - probably forever - but Ty would want you to experience joy again. It's okay, and I wish you many more joyful moments with friends and family and of course, Ty, (carried in your heart).
    Chris, NY

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  20. What wonderful friends you have. God bless them. This is what we would all love to do for you. I'm so happy to hear about your beautiful weekend!
    I find myself taking to Ty more now. Did you know that the more you talk to him and picture him in your mind, the easier it is to recieve a message from him. Before sleep, replay every happy memory of him you can think of and it will be easier for him to come in your dreams.
    He will be there one day.
    Many prayers and much love for you Campbell family!! God Bless!

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  21. When you feel Lonely

    When You feel Lonely
    When a person you love passes away
    Look to the night sky on a clear day.
    The star that to you, appears to be bright,
    Will be your loved one,
    Looking upon you during the night.
    The lights of heaven are what shows through
    As your loved one watches all that you do.
    When you feel lonely for the one that you love,
    Look to the Heavens in the night sky above.

    Author unknown

    Thought you might like this poem...
    Love, Jody

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  22. Sending you many hugs, Cindy. You and Lou and Gavin continue to be in my daily prayers.
    Trish

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  23. Hi Cindy, I have wanted to post for some time now. I love reading your posts and although we have never met, I hold Ty and your family close to my heart. You and Lou are amazing parents and I think the action you have taken toward research for childhood cancer is amazing and a gift for families everywhere. I ache for your loss but still believe Ty is with you and your family through everything. I also believe in rainbows and ladybugs. My mother in law passed away almost two years ago and she was truely a magical person and an angel while she was here. My oldest daughter had a very special connection with her and my youngest daughter was born about 4 months after she passed away, never meeting her, here, in person. When there are days that I find myself missing her and wishing I could share something with her, like my daughter's first day of kindergarten, I always find myself looking up into a rainbow. I started a "diary" for my older daughter where she writes letters (she dictates, I write) and draws her pictures, so she can still feel connected to her. Yesterday, out of the blue, my 19 month old was talking about "Nana". She said "Nana's here". So I asked her to say it again, she did so I asked her "Nana's here?" and she said "yeah". I don't think it gets more pure and honest than from a toddler!
    Several weeks ago you posted pictures from a hike. When I looked at the picture of Gavin on the path in the leaves my mind automatically saw Ty next to him as if Gavin were looking right at him, and the picture of Gavin with Lou looks like Lou is holding Ty's hand in his other hand as they walked to the water. I believe he was there.
    XOXO

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  24. So glad you all got a weekend away - and Gavin is as cute as ever. Loved seeing both those boys dressed up - I bet they brought a lot of smiles to the people around them. As someone above mentioned - I guess you will always have strong feelings of loss/guilt etc when doing things that Ty couldn't do or you wish Ty was there for - its only natural - its ok to feel that way but please never let it stop you from living and doing them. Ty is with you always and he is there experiencing it all too - I truly believe that.
    Ty is so generous and present for so many of us - I saw a hawk yesterday while driving and I thought of Ty. I've been feeling a little out of sorts yesterday - while my son slept in the car and I was having a woe is me moment - the song Iron Man came on. I hear that song all the time now - I used to hate it - but ever since I saw the picture of Ty in his iron man costume I can't help but listen to it and think of him. I think that song came on at that moment because Ty knew I needed some cheering up - an it worked :). I guess I am as crazy as everyone else who never got to know Ty but can't help having fallen in love with him. Sending love and strength to you all Campbell family.

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  25. I'm so glad you had such a nice weekend with your friends and family. Don't think you will ever forget any little thing about Ty. Even when you feel like you have forgotten, some small thing,a feeling,a song, a smell, a gesture,a look,an item, something will trigger your memory and it will all come back to you and you will know it all again,forever.God and Ty will make sure it is never gone from your mind.I am so glad you have Gavin to help you remember,as he remembers too! God bless you all...Jean <3

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  26. I found your blog months ago, and have enjoyed reading and following your story about Ty. We have prayed with you, smiled with you, and cried with you down here in Alabama. I raise my sister's son, Ty, due to us suddenly (unexpectedly) losing her 3 years ago. Our "thing" that she sends us is stars - all things star related. I don't think you sound desperate at all about finding signs, sometimes they just happen. Stars have been around for as long as the world knows, but when I get three cards in the mail and ALL of them have a star on them, or a star reference, you can't help but see a trend.
    Your stories about how you cherish so many details and moments with your kids have reminded me that in our busy lives, I need to make sure I'm doing the same for my Ty. He's 9, and I'm 27, working two jobs to cover everything and sometimes I just want to sleep instead of play...but your constant attention to your boys no matter how tired you were inspires me, so we play. Thank you for sharing your life with us so honestly. It truly has changed our lives for the better and I am so thankful for that. I hope to be able to do something to return the love to you guys. God bless you all <3

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  27. Love the picture of Baby Ty! And Gavin is adorable as usual in his Spiderman costume! I know it is not the same as him being physically here, but I hope feeling Ty's presence is comforting to you. Love will always keep him close to you, and I pray that Ty will come to you in your dreams soon. Sounds like you had a nice weekend, glad that you were able to get out and have a little fun!

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  28. I have never been in the position of losing a beloved child so I cannot say I know about the signs you see from Ty. But I absolutely believe that if it helps you deal with the unbelievable grief you are enduring then you believe away. Whatever it takes to get through this most difficult time. You and Lou are just amazing people and parents and my thoughts and prayers are sent your way for peace.

    PS. Gavin is just so adorable!

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  29. Reading you explain Ty's perfect little body is so beautiful and heartbreaking. It makes me cry thinking about all he went through...and what you went through over the past two years. I can't begin to imagine the pain you have endured.

    Thank you for sharing Ty's beautiful baby picture. That child even looked like an angel as an infant. I love everything that you have shared with us about Ty...sometimes I think he was just too perfect for this world.

    Thinking of you always and sending love to you, Ty, Gavin and Lou.

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  30. God Bless all of you for finding the strength to get through everyday! I truly don't know how you do it but you inspire the rest of us with your courage. Cindy you should be a writer, you express yourself so destinctively. Thanks for sharing your story and beautiful pictures of your precious boys! They are truly priceless!

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  31. Cindy~

    So happy that you, Lou & Gavin got to enjoy a fun filled weekend with friends! Ty was there with you to in spirit. You will never forget anything about Ty and if you ever do (which I doubt) you always have this blog to go back to and just like a picture your memory will come back. But something in me says that you will never forget anything about Ty! God Bless you guys!!!! May each day get easier for you and may Ty visit you in your dreams real soon!!! xoxooxoxoox

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  32. Ladybug update!
    My daughter, Ava, received a gift at least 3 years ago - one of those big ladybugs that light up a kid's room. We used to use it every night at bedtime, until about a year and a half ago, when the batteries died, and the screws were in so tightly that I stripped them, and so the ladybug has been tucked away on a shelf, pretty much ignored since.
    Now, keeping in mind how much Ty has been thought of, and spoked of in our house (AND keeping in mind that I've never mentioned the ladybug references to my kids - pbly b/c I haven't seen any)..

    Then, out of the blue, a few nights ago, my daughter asked me to take the ladybug down so she could put it in her baby brother's room. I told her "remember? It doesn't work anymore - we couldn't change the batteries"...she asked if she could try anyway, so (of course, in typically mom style) I said "sure, go for it"... and she did... AND IT LIT UP!
    I couldn't believe it! At first I figured there must have been just a tiny bit of juice left in the batteries, but sure enough - our ladybug has been lighting up for us every night!!!
    How could I NOT see this as a sign? :)

    Constant thoughts and prayers for you all from down here :)

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  33. Thinking of you all as always. Hugs from NC.

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  34. Cindy,
    Everything you are feeling is perfectly normal and the slow process of grief. I wake up so many times during the night and pray for you, Lou & Gavin. I pray God will heal the broken hearts you have, but I know any thing that is healed, always has a scar and that remanins to remind us of our journey. Ty will always be with you and his memories will remain forever. So each day when you cry, remember the song, " Jesus said come to the waters, stand by my side I know you are thirsty, you won't be denied. I felt every tear drop, when in darkness you cried and strove to remind you, for those tears I died". Always in my prayers.

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  35. I love the picture of Ty -- what a beautiful baby.

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    1. Those eyes!! So unbelievably gorgeous!

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  36. Cindy & Lou,

    You have this magical way with words and just sitting here reading, and crying always makes me put things back into perspective. The fact that I am stressed with life, now means nothing. I am thankful for all I have, and I am grateful for getting to know your family. To be honest with you, I still can't believe Ty is gone.

    I don't think you guys will ever be the same again. He was such an incredible boy who opened the hearts of so many people and changed their lives! I think about Ty everyday. I am so sorry that he is gone. I know that you will spend the rest of your life changing the fate of other kids with Cancer. Words cannot describe how amazing you are Cindy. You and Lou are my heroes. My life is forever changed. . .

    I'm happy you had a nice weekend and Gavin enjoyed himself. Wow, he really has turned into the little super-hero, hasn't he. Perhaps he feels close to Ty with his super-hero's or it is quite possible that he sees Ty. I know that may sound crazy, but maybe they play together. Like you have said, you knew Ty saw angels, maybe Gavin sees his brother. . .

    (((Hugs)))
    Always thinking about you!

    Joy Marielle
    Baltimore, MD

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  37. That has to be the most beautiful baby picture I have ever seen. No way did that gorgeous baby die of cancer. It just doesn't seem possible. Ty's strength and beauty continues to inspire me every day. His life makes me want to try and be a better person. Sending you so much love.

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  38. Hi Cindy.. I continue to love reading your blogs. I wait for your updates to see how you and your family are doing. Thank you for keeping us close to your heart and your family. Last week I went through each and every blog of yours for the past 2 years. I cried and smiled and fell in love with Ty all over again. Though I have 2 kids of my own, I just cannot imagine the pain you must be going through but your writings are so poigant and beautiful and convey your pain so vividly. I know you will never be the same again, but I will keep praying that you always have beautiful memories of Ty. Prayers and blessings for you and your family.

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  39. How does a stranger love and think about a family whom she doesnt know. I DO. It is real and true... you and your story has impacted me in so many ways. i love you and i know that sounds crazy but i do.

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  40. Hi Cindy, I saw you in the grocery store with Gavin this evening. He is adorable. I so wanted to approach you but I didn't want to invade your privacy. Think about you and your family often. Maybe next time ill get up the nerve to say hello.

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  41. Hi Cindy,
    Your son Ty has touched my heart in such a deep and blessed way. I am so thankful that you have shared both the painful and joyful experiences that you have felt during this journey of childhood cancer. Your writing is so eloquent and heartfelt, I cry each time I read your blog. I cannot imagine how much pain that you and Lou are enduring, each day must be such a challenge. You have truly helped me to put my life into perspective. I hug my 5 year old and 14 year old boys just a little harder now.
    I was in my art studio today and literally out of nowhere, a ladybug landed on my drafting table. I said hello to Ty and thanked him for being the sweetest angel, then I suggested that he make his way to his mommy to make her smile. One last note, I heard this stunning song today which made me think of Ty, by Grace Potter and the Nocturnals, "Stars". Perhaps you have heard it.
    Sending you Blessings and Strength,
    Erin

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  42. When I look at that beautiful angelic baby picture I think of a saying I heard. Sometimes our most important lessons come to us in the tinest bundles. He was given the gift of a perfect spirit by God. God chose you and Lou to be the parents of one of his Angels. And we are all blessed to have had him among us. And for you to share this angel with us. Thank you for that. He was too good for this Earth...I really truly believe that.

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  43. Cindy, your strength and faith amazes me. I wish I had an ounce of it. You are simply amazing! Xo

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  44. You will never forget any single detail of Ty. I understand that fear, that worry, but it won't happen. He is you and you are him. The connection the two of you had and still have transcends anything physical. Because of that, when you need to remember his perfect little pinky toe nails, that will be there. When you need to remember hearing him say I wub you, that will be there. The scary part is that it might not be there exactly when you want to conjure it up, but I promise, it is there - and when you truly need it the most, it will not hide from you.

    I am glad you had a fun and normal weekend with friends and Lou and Gavin. I just can't imagine how hard it is to go forward as you need to for Gavin when all you want to do is go backward for Ty. I wish there was something more that I could do to help besides offer supportive words and encouragement. It's what I have, though, so I will continue to do so and to pray for you all to find peace in this time of adjustment.

    Love to you all,
    Lori

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  45. The last time we posted about a week ago, I mentioned that as I was typing, I was watching a movie and a ladybug crawled across the mans desk in the movie. I thought, "how ironic." Then last night I was about to get Patrick whose 5yrs old ready for bed in his bunk bed and he yelled to me, "daddy, there's a bug on my window." I had the window open a little for some cold air to come in and I looked and there was a ladybug on the screen. I couldn't believe this was twice in one week. We always say a prair for Ty before bed like we always have and I said to Patrick, "it's okay, it's only a ladybug and maybe it's Ty's way of saying hello and I'm okay." It was really nice. I mean, how often do you find 2 ladybugs in 1 week, in the winter time? It's very rare. So we believe this was Ty saying he's here and he's doing good. We wanted to share that with Cindy and Lou. We're always thinking of Ty too.....=)

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  46. My 3 year old is never without one of his costumes.. the only time he isn't wearing one is when he is in preschool, and even then, he insists on wearing his brother's spiderman pj top. I think of Ty often when I watch my son walking down the aisles of a supermarket, or waiting in line with me at the post office, dressed as a super hero from head to toe and acting like it's the most normal thing in the world. lol God bless little boys. Every last one of them :)

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