Saturday, September 22, 2012

I was happily living life with blinders on for so long.  I didn't know how great everything was until I look back and yearn for my stressful, overworked with two small babies life.  If I knew then, I wouldn't have been stressed.  Or overworked.  I would have known how important it is to have balance.  I also would have been aware of how many things around me are happening on purpose.  My eyes would have been open to the everyday signs that are more obvious to me now.  In the weather, in the things I read at random, in the things I spot in nature and in the spontaneous actions of the day. 

There are people who are more aware of the world, in it's entirety, than others.  During our last hospital stay, soon after we received news about Ty's progressive disease, I stepped out to use the bathroom and spotted Lou talking with a stranger down the hall.  He was gone for a while, and I thought "oh boy, I wonder what that's all about."  Later, I was walking down the hall with my sunglasses on - feeling inconspicuous - when I was stopped by the same individual.  She was working at the front desk.  She told me she isn't looped in on what our child's situation is, but that she felt a strong need to share her own experiences with me.  "Here we go," I thought.  "What could she possibly know about what I'm going through?"

Instead of something totally irrelevant to my situation, or something religious that may or may not ring true for me, this young woman proceeded to share with me her perspective on life and death.  Everything she told me was so perfectly aligned with what I was struggling with in my own head at that exact moment that I have to believe she had some sense of the conflicting thoughts that were racing through my mind.  She briefly explained her own hardships and her daughter's poor health.  How she has been brought to her knees in sadness, doubt and confusion.  She pinched the skin on her arm and she said... "This?  This is nothing.  We are all so much more than this.  That?  The sadness that is happening in that room?  That is yours, not his.  He is so great beyond words.  Too great for us to even comprehend."  "I know," I answered, and she said "I know you know."

I didn't mention it to Lou because things were so busy when I returned to the room.  Later that night he asked me if he saw me talking to a young girl in the hallway.  I told him yes, and that I had spoken to her too.  "Oh yeah?  He said.  "I liked her, did you?  She said so many things that were so weirdly connected with all we've been through.  I feel like she was sending us a message or something."  I think so, too. 

Ty had a great day yesterday, and a pretty good day today up until the late afternoon.  Yesterday his best friend Eva came for a visit (accompanied with her parents who are great friends of ours).  Afterward, Lou and I agreed that for all that's going on it felt as nice and normal as possible.  Ty was so happy to have his friend over.  Of course they couldn't play together, but she brought him gifts and candy and she wrote a note that she read aloud, "To Ty, I love you, Love Eva." Then she added, "I wrote that because I love Ty!"  We caught a big grin when Eva was standing in front of Ty on the couch, and then a nice group kiss among Eva, Ty and Gavin (who was dressed up like Thor all day and preferred to be addressed by the name Thor, only). 

 


I mentioned yesterday how I am so worried that I will begin to forget.  Then again, how is that even possible.  He is part of every single object that surrounds me in this house.  I am especially obsessed over what will happen with Ty.  To the biological piece of him.  When I change his pillowcase I actually contemplate over keeping the dirty one (instead of putting it in the wash) because I don't want to clean it of Ty's physical presence.  I took a picture of his feet because I want to still be able to kiss that perfectly adorable freckle on his big toe like I've been doing since the day he was born.



At the same time I am experiencing a very strange need to clean and organize.  I don't have time for it, though, because I am so busy caring for Ty, which is stressing me out.  When I open the cabinet, for example, I see all the jars of baby food and supplements I bought to help keep his nutrition perfect.  Now that I am advised not to use most of it, I feel I just can't wait to get it out of here.  I don't want to see these kinds of reminders of when things were better.  Reminders that I am not fighting anymore.  I took Ty's adorable Calvin Klein underpants out and they have been sitting on my dresser for days.  Is it so morbid for me to think that I want him to be wearing them after he dies?  I bought a slew of new school clothes for Ty - comfy yet cool stuff - so he can ride around in his wheelchair in style.  I put them in a pile to have some one get them out of my sight and return them to the store or give to a charity.  He is still here, why am I doing this?  It is like reverse nesting and I can't stop this desire to keep cleaning.  I hate it, it's not a good feeling. 

Please understand that this does not, in any way, mean I've given up hope.  There is no such thing as false hope or blind hope - those are oxymoron's.  I will hope.  Always.  But I have given up trying to control this disgusting cancer anymore. I lay in bed with Ty and I recite Psalm 23 because it helps me. 

The sad truth about laying in bed with Ty is that I can't really do it anymore.  As soon as those arms go around my neck the tears are flowing so bad that I soak his pillow.  the poor kid is trying to sleep and I can't get a hold of myself.  I keep annoying him by kissing him on those delicious lips.  Breathing in his sweet breath and holding it in as if I can keep this part of him with me forever.  The night time is when the house is quiet and I am alone in my head.  Instead of falling asleep with Ty, I usually sneak off downstairs so I can write this blog or do the dishes.  It helps me so much to release some of the thoughts that would otherwise consume my mind when I'm trying to sleep.  Then it is easier to climb in late night and get a couple of hours in. 

Physically, Ty is still doing pretty well.  His eyes are always crossing on and off which makes me sad because it probably limits him as to what he can see - especially when I'm reading a book or putting on his favorite TV shows.  He has some very quick upswings where he is filled with smiles and laughter, but those can easily come crashing down at any given time and he is instead riddled with anxiety and he tells us through his tears "I just sad."  We are going to try to address this with medicine because he needs to be more comfortable.  His pain is under control and it's really not bad all things considered.  All in all, Ty is doing well.  I am not just being positive.  Clinically, he really is doing pretty darn good.  I don't usually like to share photos when his eyes are crossed, but this one was just so cute (and it's barely noticeable).  He is laughing out loud and pulling his head up to witness whatever funny activity was taking place.  This is a very strong maneuver for his very weak neck so you can only imagine my surprise.  You never know, maybe he will just get stronger with each passing day and I can't even say I would be all that surprised :) 


Goodnight and thank you all SO much for your amazing comments.  I promise I read them, and I love them.  They are so comforting.  I will also try to respond to your thoughtful emails over the course of a few days.  Thanks again, it means so much to all of us. 

Cindy

72 comments:

  1. I've just started following your journey at the end. I wish your story was ending on a different no te but you are an inspiration! I hope the end of this journey brings and freedom from guilt and self doubt. It's very obvious wonderful parents you have been for Ty and his joyous smiles show how aware he is. Prayers for peace.

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    1. Cindy, you don't know me but my family are old friends of sonny and carol's. In fact, I distinctly remember sitting in their kitchen with my grandma, Marie Marino, laughing at how Carol used to decorate Lou's bike with gold fringe. Soon after, there were weddings, babies...but I guess our paths never crossed. Looking back, we were all so niave and it was an innocent time. Since I first heard about Ty's illness, way back when he first starting getting bad headaches to reading your posts daily, I have been truly touched. Ty is perfect. His spirit is amazing, as is Gavins. And you are amazing; a true definition and inspiration of a Mother's unconditional love and devotion. I to have a son, and I know exactly what you mean. We just lose ourselves in their perfect skin, their still- baby hair at the nape of their neck, their delicious smell and the ring of their laughter. Is there any sweeter sound than a little man calling out "momma" down the hall. ...Cindy, you will always have that. No one can ever take that from you, not even this disgusting disease. Please know that although I may never know the extent of your grief, I understand your pure love for your son and utter devastation that you are experiencing, I am here. I have been here all along, just too scared to reach out. But I live in Carmel and would love to help you in anyway possible- whatver...cooking, cleaning, babysitting, anything that may help you or at least free up your schedule a bit. please contact me at nvolpe@hcks.org. Please don't be shy to ask anything at all - even just a friend. Try to stay strong and savor every second with that little angel. I thought of Ty today while teaching a poem in my English class: I carry your heart, I carry it in my heart.

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  2. I am in Tuscaloosa Alabama tonight. My son plays on the team. I have shared Ty,s story with many people. He is so in our thoughts. You all are as well. God is with you and your family. So are we. Roll Ty. God bless Ty.

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  3. I'm sending a hug your way, Cindy! Ty: You have a million dollar smile! I love you, little guy. Don't give up! Thor: You're just too cute for words.

    Laura in Texas

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  4. You are doing everything just right! The smile on that little boys face says it all! He loves and adores you and that will stay forever in your heart!!! Sending prayers your way!!!

    Lisa

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  5. Ty's physical being is so magnificent, many girls would be envious of his sheer beauty!!! And that precious soul...he is just breathtaking...Kiss that dot on his toe for me!!

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  6. Ok so here it goes. I've never written on your blog before, but I've been a constant reader since I found your beautiful family on aol. I must admit your story first caught my eye because of the resemblance of Ty to my youngest son. His smile took me in, and that was it. You have to be probably the strongest, bravest woman I've ever had the privilage of almost knowing. The love that your family shares with each other and with your readers comes through so clearly, and it breaks my heart that you suffer the way that you do. It is completely unfair. But I see something coming of this that you may not be thinking of yet. You were questioning how you were going to be able to take Gavin to the zoo or to other places without feeling so sad that you couldn't take Ty with you. YOU WILL. Gavin may be the final miracle in all of this. For every place that you take him, his brother will be there right by his side. For every smile that he will undoubtedly have on his face, Ty's smile will be there too. Gavin loves his brother, and Ty loves him back, and soon you won't be able to see one without the other. Don't ever be afraid of forgetting about Ty, because that is going to be impossible. You are going to have a daily reminder of your beloved son right where it should be, on your other beloved son. There is nothing I could think of worse than what you are going through right now. The depths of your strength are unfathomable. I wish I could reach through this screen and hug each one of you and make it all better, but at least I can let you know how I feel. Somehow I know you will get through this, even though I know I couldn't. And I love you for it. God bless each of you and I pray for the miracle that all of us hopes for.

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    1. Beautiful. just beautiful.

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    2. Well said!!!!!!!!

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    3. Adam, that was so beautifully said. You must also be an amazing person, your words are so true, Ty will always be alive through their love and through precious Gavin! I think Gavin has the ability to bring you back just by his infectious, crazy personality!

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  7. i dont even have a clue what to say! i have never met you guys but i sware i feel like i love u guys! i have never had so many feelings for people i have never met. my heart is hurting so bad, i cant imagine how u do it. i hope he proves everyone wrong again. i wish i could take his pain and suffering away. i will keep praying
    bridget xo

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  8. You know how much I love you already.. My phone broke - text me so I have your# .... Xoxo

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  9. I've been praying alot for your beautiful angel.

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  10. I have no words other then I think of Ty and you all constantly - I've never prayed so hard in my life as I pray for Ty. I pray that if he gets through this that he will not suffer and that he grow strong and live a good life. I can't even think of the alternative quite frankly. And I think we can all understand your years because we are shedding buckets of our own thinking what you guys are dealing with. You are an incredible person and so unbelievably strong and everything you are feeling is what I imagine anyone in your situation would. God bless you. God bless Lou. God bless Gavin. And of course God Bless Ty - a little boy so beautiful that even now can smile a smile that melts the hearts of so many. I am so sorry you are sad Ty - we are all sad too and I wish you can have many more kisses from girls like Eva and that Thor can keep you smiling. I pray you all have a good night. SuperTy always.

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  11. God did not promise days without pain, laughter, sorrows nor sun without rain...But God did promise strength for the day, comfort for the tears and light for the way.....Praying for you and your family to find the strength.....

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  12. My heart aches and is filled with an intense heaviness as I read your posts, but then I see his smile and a warmth wraps around me and I feel lighter. A spirit that can shine so brightly inside a body that has been through so much is truly miraculous. Ty - May your smile always shine through!!!

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  13. I just can't get over the pictures of him. His smile stays with me throughout the day. I can totally understand your need to kiss him and breath him in. I can also understand how your tears would flow while doing this. My tears have been flowing for him all week - for a little boy I have never met but who has touched my heart in a way I can't even explain. I hope he continues to grow strong and that his beautiful smile will be there for all of us to see.
    -Jennifer

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  14. Know we are still praying for Super Ty and all of you. God is taking care of him and he can perform miracles. LOVE TO TY and you all.

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  15. That is such a GREAT picture of TY!!!! Through everything that his little body has been through the fact that he can still smile and laugh is truly AMAZING. He is such an outstanding individual who I am sure was put on this earth to teach us all something. It's hard sometimes to believe in God and then try to comprehend why he would put such a young soul through everything that Ty has been through. That is something that I will never understand. I just can't help but read your blog and just over and over again think about what totally awesome parents you guys are. You have done so much for Ty and know that no matter what, he felt loved through it all because of YOU, your husband & Gavin. And I totally feel that young girl you both met in the hospital was sent there for YOU GUYS. She was a messenger for you. There are so many of us out here that wish Ty would pull through with another miracle. I am sending prayers to Ty, you and your family. The strength you have shown for your son is truly unreal. xoxooxoxo

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  16. Through all Ty has been through he always has a smile, he is amazing! I am saddened for you that your little boy has been fighting this horrible cancer and that he most likely will be taken from your family. I pray that you receive yet another miracle and that he takes the best turn towards recovery!! God bless you Campbell family, especially SUPER TY!!

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  17. Dear Cindy,
    I love that last picture of him beaming with joy! It made my heart melt! He is such as strong and beautiful boy, inside and out!
    And you are the strongest parents I have ever met.
    Rest assured that your whole family is in the hearts of so many people all around the world praying for a miracle! My candle keeps burning for your sweet Ty!

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  18. We are Praying For Your Beautiful Baby, Woody Martin Ministries, Sends , Precious Blood Of Jesus , Anointing Oil, , woodymartin.com, They Are Believing

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  19. Cindy & Lou,

    Look at that face! He is simply amazing and his smile melts my heart! You have to believe in Miracles, because you have one right there!

    Praying more in the past few days then I have in 35 years...I love you guys!

    Joy Marielle
    Baltimore, MD

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  20. Praying for a miracle for Ty. What a beautiful and special little boy. I pray for strength for you and Lou. A million hugs for all of you <3 <3 <3 <3

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  21. Cindy,
    There is no right or wrong way to feel at this point. You hve been on over load with Ty's illness for so long you probably don't know what normal is so do what you need to do to keep moving forward.. don't judge yourself if possible be gentle to yourself for a minute. Ty's smile says so much.. He is capable of feeling joy and happy feelings despite his nasty illness. You have two of the most awesome little guys... My friend there is no right or wrong way to do things at this point just do what you need to do to put one foot infront of the other.. Ty has his angels giving him peace and you give him so much love.
    Be kind to yourself and gentle... if you feel like cleaning.. clean if you feel like sitting next to ty doing nothing do it... your in survival mode...and no one can take your place....May God's peace love and gentleness continue to assist you in all that you have been enduring...God bless you ,Ty and your entire family. my heart goes out to you and I am glued to these posts... wanting to hear miracles... but again ty is a miracle... and he is precious beyond words..
    Debbie from Hawaii

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  22. Dear Ty. Yesterday today and tomorrow you make me smile you make me cry you make me think. Everything I do I can't stop thinking of you. Why are you so special? It's beyond explanation. I was so looking forward on meeting you and your amazing family on October 13 in Brooklyn. I changed my kids schedules and many activities so that we could all attend. I would think about it every day. I spoken to my 5 and 4 yo boys and we were so excited. You were my miracle. You made my everyday happy. What is going on in this little head of yours? I wish you to not be sad and keep smiling and I would trade places with you. I wish I could steal your pain away. I wish the word cancer didn't exist. So I tell you little precious boy, you must keep going. For you for your mom and dad and Gavin and for all of us. This is my only wish everyday. Please Ty, surprise us again and again. Love you to eternity. Tanya Kidanov.

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  23. I don't know what to write but feel like I should write something. I have been following Ty's story for a few years now and must say I have fallen head over heals in love with him. We have never met but I feel like I should know you. Your endless love, strength, courage, determination yet despair, fear and sadness I have felt too with my own little boy. I feel like you put so many of my thoughts on paper and by reading your posts it has truly helped me thru my difficult journey and I want to thank you for that from the bottom of my heart! I am the mother of two amazing little guys just like yourself. Little boys are the best aren't they! I have an 8 yr old and a 5 yr old. My little guy was diagnosed at two weeks old with a brain tumor and then at three yrs old with leukemia. Unfortunately we have gone thru things that no mom should ever go thru but then I also often think to myself am I crazy to think that from this horrible disease cancer I have become a better person? I too find beauty in the simplest, little things that other people walk right by and don't even notice and I thank my son for that. Your son Ty is one of the bravest, sweetest, most special and beautiful little boys I have ever laid eyes on and I can see why God chose you and your husband to be his parents. I am in awe of the love, caring, gentleness, patience yet drive, courage, fight and hope you have had thru your journey. You are truly amazing! It is because of you that Ty is here and still smiling! I am always thinking and praying for your family. I hope God gives you peace and comfort at this time. We can all see that you are stronger than you know and that you are going to be ok. Ty will always be with you ❤ God bless your family always!

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  24. Cindy, There is nothing you should or should not be feeling..your ability to express yourself and see beauty in the world, especially in your darkest times, is awe-inspiring. Because you have so intimately and eloquently shared your story, I have commited myself to handling my own grief with more acceptance and positivity. I want to thank you for bearing your deepest thoughts. They have carried me through my own rough waters. God bless you and your special family, and remember to take care of yourself.

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  25. I just wanted to share this. I attended a Celebration of Life for my friend, who passed away from cancer at the age of 43 this week, leaving behind 3 small children under 6, one 2 year old with Down syndrome. I walked in ready to cry a river, and came out smiling. It was the happiest Celebration I've ever attended, which is so odd when you think about it, but it's what she wanted. On her last day here she said "I really want to stay and watch my babies grow up, but I know I am going some place awesome". Her family got up to speak, and said "we know she is in a better place and we know how much she loved being here on earth, but we also know that if we asked her to come back to us now, she would certainly turn us down". Praying for peace and comfort for your family. You have no idea how Ty has touched my heart.

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  26. Cindy and Lou,
    I have been wanting to write to you for awhile but the words never come. I don't know what to say yet I want to say so many things. We haven't met yet, however like so many of your readers, I feel as if I know you. We are apart of the CCNS family and I look for you in the hallway. I want to wrap my arms around you and try to transfer some of the love and support I have for your family to you. I wish I could do something to help, to ease your pain or just to make your day a bit easier.

    I do believe in miracles and that anything is possible. You and Lou have to be the strongest people I have ever come across. I pray throughout the day, everyday that God gives you the strength and courage to handle and live in every moment of your day. I think of your family constantly and wonder how you are doing. God bless you, Lou, Ty an Gavin. xoxo

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  27. Cindy & Lou,

    I am so glad that someone special came along at just the right moment. I believe it was not by chance. There is so much going on in the world we can not see or touch. The pictures of Ty are precious. He looks healthy with that beautiful smile. Sending prayers and love....Christine, OH

    There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometime lose sight of this force when there is suffering, and too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.
    ~ Mother Teresa

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  28. My God Cindy,
    Ty is such a beautiful child!Every time I see his smile I have to smile back.It is so good to see him still so happy and I pray that continues for him and for you and Lou.Of course I cry too, knowing his limits now and pray for that "one more miracle".I really do hope you know how much you have affected the lives of so many people.I talk about ty and your family all the time, share your facebook posts for all my friends and family to see. We are a prayerful bunch and keep you all in our hearts and our minds.I feel like I have known you forever and I ache for you.I can not imagine how you go on,but I know you must and you will.God is holding you up,keeping you strong and he will be at your side always.Sending you all prayers and love....Jean <3

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  29. Oh Cindy! I am so grateful to read your words about the young woman in the hallway, because that is what I believe too, that is what Anita Moorjani shares with us,and in my heart's deepest beliefs it is the big picture of our earthly lives. The sadness in ours, "the others". Ty is in the closest contact with God as he goes through this, thus that beautiful smile, that kind and peaceful heart! :) Anita also has a meditation CD that I listen to often when going through crisis. I just lie on my bed and put on my headphones and listen to her voice through beautiful music. I always find peaceful sleep - I don't think I've ever heard the end of it!

    When I asked for prayers for Ty on Anita's (closed) facebook page: "From Surviving to Thriving" it was recommended that I invite you to join. I didn't because I wasn't sure if you might think it too far fetched. But your writing about the woman...the angel?...in the hallway, I took it as my sign to indeed invite you to join Anita's kind, prayerful, supportive online community for those facing health issues. There is where your further questions you mentioned to me after reading Anita's book, can quite possibly, get answered. Just let me know if you and/or Lou are interested. Sending so much love, Marianne from California

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  30. My prayers and thoughts are with you all. Having lost my 1 year old nephew to the same cancer I can so relate to all you are going through. I only pray that you and your family receive the same spiritual and physical strength we did. I wish there were some magic words I could save to ease your pain, but unfortunately there are no words. You will always have Ty in your heart and you will always be talking to him no matter where he is.

    Prayers and hugs are sent your way.

    Nancy Schleicher

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  31. We are "ALL" here for you...... So Much Love, Kathy Brunelle

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  32. I love Ty more than words can describe and I have never even met him. I'm praying for this beautiful little boy.

    -Sydney, 15

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  33. What beautiful pictures that capture Ty's amazing smile and love of life. He looks so huggable and soft and cuddly. I wish that the world would stop moving just for a few days so that you and Gavin and Lou and Ty could keep on smiling and laughing in living right in that moment. He has such joy on his face. Even in this time of despair, he is still not letting that horrible cancer come out on top. He is smiling! He is beautiful! He is so much better than that nasty cancer! He is fighting! He is truley amazing! Since I can't stop time, my wish for all of you is that you have plenty more days of Ty's smiles and giggles and hugs. If you ever doubt yourselves, just look at that smile on Ty. He feels so loved and comfortable and that is because of you.
    Lynne

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  34. Its true Cindy , we are so much more.. He knew before he came here what he would indure and how long he had. He choose to come anyway, thats why he is so so special. So is your whole family. You all knew this suffering before you came. You chose to come anyway and help us. Thankyou. Your reward is in eternity. And that is the one thing that is very very real. Nothing can take him away from you. He is forever and so are you. I wish I could say it right to help ease the pain. I wish I had better words. Thank you from the bottom of my heart for sharing and teaching me through your pain. Much love.

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  35. I remember you from high school and Ty has your big beautiful smile. You have a wonderful spirit Cindy and Ty is blessed to have such a wonderful mommy. Praying for Ty and your whole family...Remember to let Ty be your strength as you are his.! Lots of love, hugs and prayers!

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  36. Greetings In Jesus Lovely Name,
    Praise God For His Healing Power, God Is On The Throne ! he Is Able To Save, Heal, And Deliver, I Believe&Receive The Gift Thou Have So Graciously Given, In Thy Son, JESUS Dear , Beautiful Name,Reverand Janet Ellsworth,is On CTN, The Program Is Called You&Me, Live Prayer Mon-Fri, Begins 9:30pm PST, 12:30am,EST,, 3hrs, Call In For Prayer, She Is A Powerful Woman Of God,She Is A Miracle, God Healed Her From This Condition , Please Call Her To Pray For Your Beautiful Son, She Is On Facebook, God Bless You, I Know You Will Receive A Miracle Of Healing For Ty Amen,

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  37. God bless you, Cindy. I feel like God is writing with your hand when I read your posts. You've taught us all what a real mother is. You and your family deserve nothing but peace and happiness. I pray for that every day. For you, Lou, Gavin and especially Ty. What a special gift from God he is. I agree with the special person who commented about you feeling Ty through Gavin. I can't imagine your pain so I won't pretend to. But I will continue to pray for you.

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  38. Cindy, I found this blog by accident a couple weeks ago, on a friends wall. I have gone back and read every post from the very beginning. I have 4 kids of my own and I just don't understand how this stuff happens. I don't get why your beautiful boy has had to endure so much...I clearly do see that he has traveled this road with such strength and grace. It hurts my heart to see what your whole family has gone through and what more you will endure. I'm sorry for you but please know that you have opened my eyes to what is real, what is important. I pray for you all to have peace.

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  39. Dear Cindy,

    Your words are beautiful and inspiring, but at the same time, you also break my heart. I love Ty's photos. They are amazing, wow, that smile! Your husbands question and your answer the other day were unbearable. I couldn't read on. I love your family and I wish for another miracle.

    P.S. I love your name. I lost my beautiful sister-in-law Cinzia (Cindy) to cancer a few years ago. Cancer sure does SUCK!

    Love, Angela (Carmel, NY)

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  40. I wish you never had to survive this but I know you will survive this.

    I have a friend Jessie who lost her sister in a jet ski accident many years ago. We had been friends for a year or so before she mentioned it to me. As I have heard so often that families "never really get over" these things or "the pain never goes away," I looked at her with the most listening, sympathetic eyes and asked how her family was. I was ready to hear all of the things I just wrote about. She has a really cool, awesome family and you know what she said instead? She said (and genuinely meant it) "We are really all okay. We really made it through."

    We are all so much more than our physical beings here on Earth (available for a pinch like your friend in the hallway noted). This physical existence is a tiny fraction of our greater beings. All things here on earth come and go, are born and then die. All things. It seems so sad to us here but there is no sadness in the greater part of our existence. We all leave this place but none of us go away. Ty will always literally be here with us, even if it is not the way we wanted for ourselves.

    I love you and I hate this miserable piece of your physical existence and want to make it all better for you. Thank you for sharing all of your pain so we can hear it and understand it more fully.

    "In high tide or in low tide, I'll be by your side."

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  41. Cindy,ive been following your blog and i just like everyone else have fallen in love with Ty! he is such a strong boy and you are such an amazing mother!So many of the things you wrote have made me cry but at the same time have made me more aware of what is important and what things we take for granted.My 11 year old son asked me the other day why i was crying and so i told him that i had just got done reading your blog the one where you were talking about Gavin jumping in the puddle and how Ty would love to jump in puddles.I would be the one who would normally freak out about my kids getting wet dirty and sick well not anymore! we will be jumping in puddles the first chance we get! in honor of Ty.My oldest son is very religious has been from the time he was an infant he would look at the cross on the wall and smile.As soon as he could he began altar serving in our church and tells me often that God sent him here for a reason and that it is to help people.When i was done reading your blog the other day he said "mom i know its sad that Ty is dying,it makes me cry too he's just a baby but God knows Ty is too good for THIS world.He is going to God's kingdom where he will be able to do great things he is special".He also said he wished he could sit and pray with Ty but he cant so instead he lights a white candle every night before bed and prays for Ty and your family and sends positive healing thoughts your way.I believe Ty is starting Gods work here on earth already in all the lives he has changed just by what we are being forced to realize threw your strong honest posts.Never give up hope ever that beautiful boy of yours is so amazing.Hugs and kisses to Ty and your family we will be praying every day for all of you

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  42. To Ty and his family. I happened upon your blog many months ago and felt that there was a purpose for my find. I know there is a path for all of us, but it breaks my heart to hear of your illness. You have made me aware of things I didn't know before and I pray for your miracle every day. I will forever be changed because you came into my life. Thank you from the bottom of my heart for sharing your life and your story with all who read it. You are an angel here on earth, Ty, and we are all blessed to know you - however that comes about. My family lives in IL and IN and your picture reminds me so much of my great nephew. Your bright smile is infectious and I will carry it with me forever. God bless you and your family, Ty.

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  43. The pictures you posted are beautiful..It is hard to believe that beautiful perfect little boy is sick.. I don't even know what to say today except that I am thinking of you guys all day and night. I checked the blog about 100 times during the day yesterday waiting to hear how he was doing and then had trouble sleeping all night waiting for an update. I literally had my phone on the night stand and woke up about 4am and started reading. I am still praying for a miracle for Ty. Sending as much strength and hope that I can to all of you guys. God bless you all of you and especially that beautiful baby

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  44. God bless you all! Thank you for sharing the pictures with us. You continue to be in our thoughts and prayers.
    Jennifer, Illinois

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  45. When you are going through something like this it sometimes feels like you are so alone. It feels like you are dealing with this horrible thing and everyone else is busy just living normal lives. Just know that you are not alone. We are all here for you and your family praying for you every step of the way.

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  46. I like the last post because it is true. Cindy, You are never alone. Never Ever will we stop loving you. Your family is in our constant thoughts for years to come.

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  47. Lou, Cindy Ty and Gavin,

    I look at those amazing pictures of Ty and for a moment I don't see cancer,or illness. I see happiness, and hope. You never know what the future holds, I am so happy to see Ty enjoying himself and everyone around. I pray for you all daily and too see Ty enjoying the company of a friend that's the best medicine, I can see it in his eyes the love and happiness..I hope and pray for more days like this...thanks for sharing the pictures made my night to see him so happy and comfortable...love and prayers from Long Island NY Lisa

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  48. Cindy you are just an amazing mother. you are just so inspirational and wonderful. I pray for you every day and I also detected a song for you Ty and the rest of your family. god bless all of you.


    love

    Ali pope

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  49. The pictures you just shared are beautiful beyond words. I have told all my friends about your story because it is so important. I'm going to watch the ball missing on you tube because it's too cute and I can stand it.

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  50. Beautiful child. He is in my thoughts every day and I pray for both him and for your family. xo

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  51. Your story has made me so sad as well as taught me a few things about life itself. Praying for your family and that you always remember that beautiful smile of Ty's. God bless all of you

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  52. Hi Cindy, I went to church today in Pawling and I said an extra prayer for Ty. I also asked God if he could spare a miracle, Ty needs one now. Thank you for sharing your story. I think of you and your family often and I will continue to pray for all of you.

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  53. Beautiful pictures to cherish and remember. You will never forget. God's blessings to all.
    Jo-Ann Ginivan

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  54. Each night when my house is quite I come and read your posts...I just want you to know that people are praying for your family and your presious boy Ty....all though I don't know you....I CARE.... and wish I could take some of your pain away.....

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  55. There is a candle glowing in Sts. Peter & Paul church for you all tonight. It flickers for hope, it flickers for strength, it flickers for courage and it flickers for faith.

    Thy WIll Be Done... I will continue to pray that His will is a miracle for Ty.

    Love and many prayers from FL,
    Michelle

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  56. I came across your blog last week. Wow, Ty is one super photogenic kid! What a great smile! Just letting you know that I'm a complete stranger who is now thinking of you daily and sending you all the positive, healing energy in the world...

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  57. The lady at the hospital is an angel God sent your way to deliver you a message!

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  58. Ty is my hero, you are a wonderful family and you are all in my prayers. Ty now owns a little piece of my heart forever! God bless you all.
    Love and prayers!
    Denise

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  59. Cindy and Lou,
    My heart is so heavy for you and your precious family. My prayers are with you and your beautiful boy. I don't even know you but your story has captured my heart. You are a wonderful mother and inspiration.

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  60. When I was a child I recall the day we found out my grandma had a brain tumor. I remember everything like it was yesterday; it was this time of year and it was over 20 years ago. Leads me to think that if we can't beat it today, that sweet Ty is here to teach the rest of the world compassion as I feel I am overly compassionate towards others. You will get through this, I like every one else wishes to be in your immediate life to plant the tree, to make you dinner, to give you a hug. But we're praying for you. God will get you through this, please don't ever second guess yourself...you are the most loving parents. I am so sorry your family is having to endure this. I pray peace will find you soon whether it be in Ty improving or if he goes to heaven, but peace will come and God will bring you not only peace but happiness again too someday, please trust in that.

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  61. Praying for your family and especially for your precious little boy! May God wrap you all in His loving arms!

    Bambi Muylle
    C.O.L.E.'s Prayer Team
    www.colesfoundation.org

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  62. May God's love and healing light shine on all of you and His mercy bring peace to your soul.

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  63. I'm always praying, always crying right along with you & somehow, I find myself thanking you. Thank you for allowing us to let us into your lives, letting us love Ty right along with you. People say "bad things happen for a reason"...well, I don't know if I can think of any reason for Ty to be going through all of this, I don't know what lesson can be learned. It makes me so upset & angry. I do know that somehow Cindy, you & Ty have taught us all to love just a little bit more, to not walk through our daily lives with "blinders" on & to hug our children. I will continue to pray every day for a miracle. Thank you for allowing me, a stranger, to love your beautiful Ty.

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  64. I have suffered great loss..my husband and 2 brothers and I could not imagine loading my son...or having him hurts and not being able fo do anything about it ...I am spool sorry you have to endure this heartbreak.I.will pray for you

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  65. Please go to this site: www.quincylee.org. May be something you can think about in the future. My cousin went through exactly what you and your family are going through. You are all in my prayers.

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  66. I am thinking about Ty and praying for you. I admire your articulation of your feelings and I just hope for the best for you and your family. I believe in your love for your son. I think you will be freed from this pain at moments along the way. Stay open if you can. And believe in yourself. Ty loves you very much. There is no map for what you are going through expect your love.

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