Tuesday, November 20, 2012

Breathe in, Breathe out

Sometimes I feel so down, that's all I can do is breathe until I snap out of it.  I received this in the mail today. It was written by Laura Bauer and published in Bereavement Magazine in 2001. I thought it was a good description of how it can feel to lose a child.

You open your eyes, the nightmare is real
Breathe in, breath out - try not to feel
The weight presses down on your chest
Your lost the one you loved the best
You roll from the bed and continue to breathe
How difficult now it is to believe
As you stand, a panic enveloped your heart
It comes from the days of being apart
Breathe in, breathe out, it will subside
As reality hits, and you know that your child died
You shower and dress by pure will
Your life has become one bitter pill
Breathe in, breathe out, and concentrate
Don't think, don't feel, don't contemplate
As you pull the car out and begin to drive,
Slowly you notice that you are alive
Heading east, to your surprise
You see a glorious new sunrise
And you feel something - ever so slight
A lightening of heart - not quite so tight
Day by day you start to see
The things that will allow you to be
A survivor, a fighter, a poet of late,
A leader, a teacher, a healer a mate
You know in your heart the wound will be there,
But you also know that you have your air
And you have life for whatever it's worth
To keep on fighting and showing your mirth (I fight for TY)
You will always remember your child's tenderness
The loving and giving with each little kiss
Your child will be there when you go to sleep
The memories are yours to treasure and keep
So continue to breathe, it is important to do
And eat a good meal, and get some sleep, too (ha!)
For many love you and worry a lot
All we can say is "continue to breathe"

Ty Campbell, April 2009

I am taking teeny tiny baby steps toward coping.  I can't bring myself to clean out his favorite foods from our pantry (the stale fruit snacks, the salty cashews that I bought at the hospital, the blue bottle pop, the half eaten bag of dried cranberries and the box of "Ty lollipops" from the ladies at the bank), but I was so proud when I cleaned his room and put all of his therapy equipment aside for donations. 

There are also the "firsts" that are steps in healing (I guess).  Like the first time I let Gavin play with Ty's toys, or the first time I went to the supermarket without him.  I haven't gone down the candy aisle yet - I avoid it like the plague - but someday I will make that step, too.  Some days I am so strong, and others I am just a mess.  I guess that's the way this works and today was more of a "mess" day.  I was proud last week when Lou and I took Gavin to The Daily Planet (a favorite of Ty's) even though I felt like there was a boulder on my chest the entire time, but I couldn't bring myself to order a strawberry milkshake for Gavin even though I knew he would love it.  That is the very last thing Ty tried to swallowed in his life.  One teeny, tiny sip of a strawberry milkshake. 

I truly miss seeing Ty's doctors and nurses.  Looking back, they were family.  Can you imagine how weird it is to go there every week and visit with the people who were fighting for Ty just as hard as we were, and then we just take him home and walk out those doors for the last time - leaving them all behind after over two years together.  They haven't forgotten about us - not at all.  It's the opposite, really (because who could forget Ty?).  Ty's nurses have all been in touch.  They check in on us, they really care so much.  I am happy they were all a part of Ty's life.  I used to hate being at the hospital.  I hated it so much, because I hated that Ty was sick.  But now, I wish he was sick - that we could go back to the hospital - because I would rather have him sick than have him gone.  I don't always believe that, but when I am missing him and at my lowest like I have been all day today, I feel like I would trade anything to have him back even if we had to live with cancer forever.  I say "we" because all of us lived with the cancer right alongside him.  What an evil disease it is. 

In my heart of hearts, I know that's not what we ever wanted for Ty.  I would say, unless he can get himself off that couch and onto his feet, then this is not the life that I want for him.  That he would be better in heaven.  But, my selfish side wants him back at any cost.  I know it wouldn't be fair, but I want to hold him in my arms like you couldn't imagine.  I want to hear his voice so desperately.

I have a lot on the agenda for the foundation tomorrow, so I am signing off.  Goodnight, and I look forward to updating you on the progress made!  Thank you all so much for loving Ty and for fighting for this cause. 


47 comments:

  1. Baby steps are good. Look at what you've already been through? You can take on anything life hands you. You are an amazingly strong women and the perfect mother to your boys. Thank God Ty had you and Lou for parents. No wonder he smiled all the time. Thanks for letting me see his beauty. I will never forget and I will always look to try and help raise awareness because of SuperTy. I pray for comfort for you and your family. God Bless you

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  2. Thank you for always sharing.. You give so much and lost so much .. The way you miss and long for Ty, his Drs and Nurses.. All that had anything to do with Ty and his fight is the way I feel about you! I don't want to lose you, so please never give up..ever.
    I pray that you feel the love and support that Iam sending and praying for you every day from one mon to another. My heart is with you.

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  3. It just sucks! I want him back for you, too. Your post really touched me tonight. They all do, actually. Your honesty is so refreshing. The strawberry milkshake was a tough one to swallow (pun not intended ;)
    Take care, Cindy!! Sending love and giving extra love to my 5 yr old boy everyday now, for Ty too!!

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  4. The thanks all belongs to you. You are doing awesome, I think just being able to get up in the morning is a huge accomplishment considering what you have been through. I am so thankful I stumbled upon this site and feel like I know your family. I do miss the Ty updates and pictures of him laying on the couch. Whenever I take our dog out in the morning early I look up at all the stars and first I say hello to my Dad and then to Ty :) I know he is doing great things in heaven. He is a part of you and with you I just know it. I think it tool great courage to go to Daily Planet with Gavin. That is great, you are so brave. I completely understand the strawberry milkshake thing and it is fine. I will be thinking of you guys as usual and praying today is a little easier. I hope it is a very productive day for the Ty foundation. Sending hugs your way!

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  5. I can't imagine the grief you must be consumed by Cindy? I think the fact that you are still able to post to Ty's blog, get out of bed and do anything at all so soon after losing your son is truly inspirational! I think about Ty everyday, whether it be a soaring hawk, a ladybug, a pretty sunset or just looking at my own beautiful boys. I know they all tell you time heals all wounds. I am sure it is the last thing you want to hear or even believe, but I think over time it won't be so raw and you ( because you are so strong ) will be able to get through a day without so much pain. One day you will get down the candy aisle and smile!

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  6. I have followed Ty's story for almost 2 years now. I have laughed and I have cried. I wont say that I can even begin to imagine the nightmare you are living right now. I will say that Ty is all around you, inside of you, inside everyone of us who have fallen in love with him thru you. Ty is going to do fantastic things for childhood cancer. I love you, sweet Ty.

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  7. Cindy, I am so sorry TY is gone. I cannot imagine your pain. But I pray for you all the time and I hope you can begin to find some peace.

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  8. Cindy-
    My heart is with you always... I think of you all the time, while driving, in the grocery store and before I fall asleep. I pray that the wonderful work that you are doing in Ty's name will help thousands of other children and families that the whole world will know the beautiful name...Ty Loius Campbell. All my love always,
    Keri Kearney

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  9. Hugs and hugs and hugs. I wish things could have been different. I hope today (Tuesday) is a day when you feel Ty watching over you.

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  10. Cindy ~
    I wish I had some wonderful words of wisdom to help you on days like this was. I can't tell you how many times during the day my kids & I think of Ty, and all of you. Sunday we were driving and saw a young hawk sitting on a sign post. Emma wanted to take a picture so I sat at that stop sign for what felt like forever, making the cars behind me wait. She wanted the picture for Ty. Know that every night, as I lay down, I pray a special prayer for you, Ty's mommy. I pray for you to sleep and refresh. I pray for your heart to have peace. Every night. Remember...you & Lou have an army of followers fighting with you. Gain some strenth from us beautiful lady. Just keep breathing and living.
    Love and hugs,
    Linda Baumann

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  11. Jennifer Russo, Lake Grove, NYNovember 20, 2012 at 8:00 AM

    All you can do is breathe....and just get through the day. Hopefully with more smiles as time goes on.
    Thinking of Ty always.
    -Jennifer

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  12. One day at a time...hang in there. Thoughts and many prayers for your family as you grieve the loss of such a special boy.

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  13. Hugs to you today ((((( ))))). That is a beautiful poem, thanks for sharing. SuperTy, we all miss you so much!

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  14. Two years later and I often feel like a dumb animal going about the motions. You keep breathing for your family and because your child would have wanted you to but joy is in very, very short supply most of each day. I don't cry as much but that's not to say that going to the supermarket is easy. There are foods I won't eat and there are aisles where I feel the tears. It doesn't get "easier". I think your mind and body accept the change. You have a "new normal". Somedays I do feel lighter but not around holidays or momentous occasions.

    It's a horrible to live without your child, sad, mean, unfair and dreadful.

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    1. I'm so sorry ...

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    2. Thinking of your family as well....

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    3. So sorry for your loss. The last sentence really hit me, fighting back the tears at work.

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    4. Your last sentence took my breath away. I'm so sorry.

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  15. Cindy,
    As always you and Ty are in my thoughts. My heart is so heavy and sad, I can only imagine the way you are feeling is very normal and ok. I would want my baby back too. Life is NOT fair.
    Love,
    Christa

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  16. Thank you for continuing to share your story. Your strength during this time is such an inspiration. I pray for your continued strength and comfort.

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  17. Morning,

    Thank you, again, for sharing your beautifully written poem & heartfelt journey.

    Ty is my hero & he will always have a very special place in my heart.

    I am looking forward to being an active donor & participant in the Ty Louis Campbell Foundation.

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

    God Bless.

    - Rob Swan

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  18. Keep moving forward! Your beautiful boy wouldn't have it any other way.

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  19. Baby steps is all you can do Cindy! Take one step at a time, one day at a time. You are thought of by so many so often, my heart just hurts for you! My boys love the Daily Planet too and you know what, the next time I am going to buy them a Strawberry Milkshake in honor of Ty! What a beautiful special little boy!!!! He's changing the world,Cindy! He's making the lives of so many much fuller, making better people out of so many!! He's a sweet Angel and with every day, take that breath you need to get you up out of day, take that breath when you need to take that first step because Ty wants you to live! and he is there right next to you and behind you to catch you if you fall!!! You were his strength and encouragement for so long, now he is there to help lift you up and hold you there! and when you close your eyes, feel his embrace and hear his voice because he IS by your side hugging you and talking to you! When you make your coffee in the morning, he is there putting his "wub" in it and stirring it with you! His hand holding yours as you did for him! One breath, one step... you're heart will never completely heal, but with each day you will gain more strength! Much love to you and your family! You are in my prayers each day!

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  20. My heart aches so much for you and your family. My almost 3 year old saw a picture on the side of your blog of Ty and Gavin and insisted that it was him and his brother, who turned 5 in August. Thank you Ty for giving me more patience when I feel like I have none left. Thank you for reminding me to count my blessings, hug longer and love harder. I would want him back too, cancer and all. No one can blame you for that. Take care of yourself and know that Ty truly does inspire us all and so do you. Hugs and tears from NC.

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  21. I feel so much love for you all. I started reading your blog only a few weeks before your adorable angel passed & I must say I was just overwhelmed by all that you have gone through as a family... I pray for your family every single day...Bless you all... Rest in Heaven Super Ty.... I also read another blog called Rockstar Ronan I think you could relate to this blog if you want to check it out.

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  22. I am trying so hard to have more patience with my daughter.. She is 8 and just tries to push and push me as hard as she can. In some ways she tests me to make sure I still love her...It is just so hard. I try to think of Ty and not having her around ..but some days its a battle of the wills and I keep losing. Thank you Cindy for sharing your feelings.

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  23. Cindy,
    Thank you for sharing. My heart bleeds for you. You don't have to be strong. You just have to be. I think there's a bit of divine intervention when signs come to us. My son came to me the other day excited that he'd found a ladybug (in the cold of fall in Ohio!) and he took care of it well. It's always my cue to pray for you.

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  24. Cindy,

    My heart knows how you feel. And the poem describes it pretty good. Life will never be the same in the eyes of a parents that has to say goodbye to their child. And honestly, no one that hasn't, cannot come close to understand. You will adjust to your new life for Gavin and Lou. Ty will hold your hand while you take your steps. And you will hit walls from time to time and Ty will be there to help you find the door. Ty is all around you. And ten years from now when Gavin is starting high school, Ty will be there holding his hand to walk him through those doors.

    I know that my Zack is cancer free now and he can spread his wings and do things up in heaven that he couldn't do here on Earth with m. But I would take one more day of him being sick if that meant I can touch his skin, kiss his lips, hold his hand and hear his laugh agin in a heartbeat! Selfishly of course, cuz I would not want him to ever be in pain again. How you feel is normal and it's very unfair that we have to know these feelings.

    I never let Zack's baby brother Jake play with his toys because he was the last one that touched them, and I never let Jake wear his clothes for the same reason. But looking back, I wish I had because maybe that would have helped me grieve and cope instead of grieving 10 years later. Keep Ty's favorites in the pantry for as long as you want to. Build a shrine. You do what you need to do to get you through this!

    I wish nothing more than peace for you, Lou and Gavin to get through these uphill battles. I read this boem from our Compasionate Friends Group.. The Storms of Grief.. I hope this helps.

    Becky Swarthout

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  25. The Storms of Grief
    I’ve often thought about how differently grief affects those left behind when someone has died. To me there are three groups of bereaved.
    There are those that lose someone they loved very much and are most affected. The middle group are those that cared about the person
    and will miss them, but their death doesn’t change their lives. The third group are sorry that the person has died, but are largely unaffected by their death.
    Now envision those groups on a mountain. When my son died, I felt like I was on a mountaintop, alone with a storm raging around me.
    Thunder and lightning filled the sky, thick clouds enveloped me, and a cold hard rain fell upon me. Winds buffeted my body from every side.
    There was no shelter, no place to sit or lie down. Others who were suffering as much as I (my husband and daughters) were on their own
    Mountaintop, and we could derive no comfort from each other. I stood there, sometimes railing against God, sometimes feeling as if my heart had been ripped out, sometimes just feeling an emptiness so deep, I feared I would drown in it.
    Days, weeks, months passed.
    The middle group of people stood on the side of
    the mountain (close friends and relatives). They also were caught in the storm, but they had some shelter and each other. They wanted to comfort me but the path upward was winding and rocky and I could find no
    path down to them.
    The last group of people were at the bottom of the mountain in the valley. There, the sun was shining and the breeze was gentle. They
    could see the storm I was caught in, but could do nothing to help me.
    Sometimes the storm would subside and I could see something besides dismal gray and I had respite from the wind and rain. But this
    would be followed by another raging storm. Back and forth, I never knew what to expect.
    Eventually the sky would clear and I was able to find a path to those that cared and could offer me hugs and a shoulder to cry on. The
    storm was still there, but there was also shelter and I wasn’t alone.
    It has been 12 years since Todd died and I have been able to come completely down off that desolate mountaintop and live in the valley of sunshine. Sometimes I stay there quite a while. Sometimes I climb that mountain and experience that same emptiness and sadness.
    We all know that this kind of storm may brew on those special days - birthdays, holidays, family events. We are also blind-sided by
    those times that just take our breath away. . .being in a place they loved,
    hearing their music, smells, movies, ballgames, seeing their friends. We
    really have no control over these unexpected, sudden storms.
    I have learned to give into them and let the tears fall. I can live with these storms and accept them as part of my life because my
    child lived and I loved him with all my heart. I cannot change the fact that my child has died and I will not change my love.

    Becky Swarthout

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    1. Wow - thanks for sharing. It helps people (like myself) to at least have a glimpse of what it feels like to lose a child. Grief unimaginable.

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  26. Why you should clean out his favourite foods or things? I wouldn´t do it...you don´t have to...I would leave it there and leave the sweet print of time on it...you don´t have to do it. He is everywhere, and he was there...It´s the remind that he was there and that everything is just the same...I wouldn´t take away anything. Those are Ty things and though now you can look at them with grief...one day I´m sure you´ll look and them and show the most loving and sweetest smile...

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  27. they say 'one day at a time' but i think you can allow yourself 'one minute at a time' or 'one second at a time' - even a second is a milestone of the heart. keeping your ty and your family in our hearts from NYC this thanksgiving season.

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  28. Yes, its one step, one day and one breath at a time. I pray that with each day, life is easier for you. I know it will never be the same, but just know that Ty is everywhere, he'll always be in your heart. Because of Ty, I take more time with my 6 yr old son. Perhaps let Gavin wear Ty's clothes and play with his toys...its what Ty would want now. Let his do this in honor of Ty and the wonder time he shared with his big brother. Prayer to you always. Betty

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  29. I suspect that no poem can make those of us who haven't lost a child really understand the level of pain involved for those that have. I certainly wish there wasn't the category of "those that have". I know how hard it was/is to have lost a parent who was also my best friend and greatest supporter. I also know that losing a parent is nothing compared to losing a child. We are "supposed" to lose our parents. In my case, I would say not in my early-20's, but "supposed" to nonetheless.

    You are right, you all had cancer. I have never physically had cancer but I struggle with cancer every day. I lost my mom to it. I witnessed a horrible death because of it. I am fighting alongside my husband who is dealing with cancer right now. And I'm sure cancer will strike me again in the future, as well. Just seems to be what it does.

    It's odd, with us. I have an incurable and incredibly painful disease. I will deal with this disease for the rest of my life and there is no cure, no relief. It is like cancer in that I have tumors growing all over my body. But it is not a "protected disease" like cancer is, which means things like my employer actually "can" fire me for fallout from this disease. My husband tells me all the time he'd gladly take his cancer (a very curable form) over my incurable disease. No matter what, though, I am dealing with my husband's cancer as much as he is dealing with my incurable disease. All we want to do in our house is get through it. And there are no guarantees for either of us. We just have to stay together and support each other as best we can.

    I like the storms of grief that a previous commenter posted. My grief from losing my mom is not nearly what it was in 2004 but it still strikes, most notably on her birthday, around our favorite holidays, and on mothers day - the day she died. The grief makes no sense to those who have never lost a very close loved one - and most in the early 20's haven't. As my friends and I get older and people join me in the "have lost a loved one" category, people are starting to understand. It's something I wish no one had to learn, though. Especially not a parent for a child.

    Sending you love and prayers for less stormy days ahead.

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  30. I am struggling with the poor quality of life vs my selfishness of wanting my grandfather around for longer. I often get so conflicted praying because I don't know what to pray for. In my heart of hearts, I know he won't get better so I end up praying for peace and comfort. He has lived a long life and I still struggle with this so I can't imagine going through losing a child that didn't get to live and grow in this world. I always prayed for Ty's healing first because I know that's what my grandfather would want...a child's healing over his own. I know that when he finally does pass he will walk with Ty and tell him the greatest fish stories.

    Praying for lots of smiles for you and your family through the holidays!

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  31. You are an incredibly strong person and mother, truly an inspiration. I completely agree with other comments here that the fact you get up everyday is a testament to your strength. I think about you and Ty during the quiet periods in my day - when I am driving home from work, washing dishes at the sink, giving my little girl a bath...my mind naturally settles on Ty, on you and your family. Thank you for sharing his story - Ty continues to change the world and change lives...may you find more peace in every day that comes and I hope your sweet angel Ty visits you in your dreams.
    Love always,
    Lisa

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  32. Dear Cindy -

    There is a beautiful song on the Rascal Flatts cd titled "Unstoppable" that is called Forever. You may want to listen to it. I used to listen to it when my sister in law passed away a few years ago and it always made me feel the way her husband must have been feeling. It is good to listen to during a good cry. I have been following Ty's story since his death and I only wish I had known about him earlier - he would have had one extra prayer. He was a beautiful child and you should be happy for the way you took care of him when he was with you; you are an incredible mother. I wish I could take away some of your pain, but there is nothing any one can do. Mothers are not supposed to lose their children. I hope you and your family try to have a Happy Thanksgiving - Ty would have wanted it. Please feel free to respond to me at sintak99@aol.com if you listen to the song. Good Luck on your foundation, I wish I was near you to help you out. Your blog has definitely made me a better mother - I cherish my 3 girls more than ever and every time I give them a hug, I wish Ty was with you so you could do the same. I will continue to pray for all the other children who are fighting with cancer. God Bless.

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  33. The stars in the sky have been so bright and clear this past week. I often look for Ty up in the sky and in the clouds. My 2 1/2 year old son loves to sing Twinkle, Twinkle Little Star. Before bedtime a few nights ago, I asked him if he wanted to say good night to the moon. He was so excited, so we quickly went onto our deck (chilly as it was) and the stars were twinkling and so bright and he started singing "his" version of Twinkle, Twinkle (how wonder you are)and then we said good night to the moon and goodnight to sweet Ty.

    Always thinking of your family. Sending much love and peace to you all. I hope this first Thanksgiving without Ty is somehow tolerable for you guys. God bless you Campbell's!

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  34. It is true what they say:
    When you loose your parents, you loose your past.
    When you loose your spouse, you loose your present.
    When you loose your child, you loose your future.

    Stay strong Cindy and Lou. After 34 years from her passing, I think of little Maggie every single day. She died at 8 years old to Lukemia. It's been 34 years.

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  35. Dear Cindy, your pain is real and still fresh. I wish more could have been done for him, he deserved it you deserved it, Lou and Gavin deserved it. Ty you have suffered more than anyone I know. I hope that now your soul is happy and free. Please visit your mama in her dreams and whisper love into her ears, she misses you so much. Always love you and think of you.

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  36. Sooooo Proud of you Cindy, you don't know it/me, but you are my Rock, everyday you, your family and Ty inspire me. I am a New Zealand mum (mom), we are struggling just abit, about to close our business, loose our home, but because of you I feel stronger. I'm lucky enough to have my husband and little son Max 4yr, whom I love even more because of Ty, and I'm trying to spread the word about him, you and your wonderful foundation. Truely amazing!!! Love, and Kindnest from afar. From Melissa-Jane, Kiwi Mum xx

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  37. You are so inspiring, and your son is so VERY loved, he truly is everyones ANGEL...thank you, thank you, thank you for sharing your life with us.

    Your story and ofcourse "Everyones Angel Ty" all make the world a more beautiful place.
    God Bless you and your entire family.
    We support you in the fight against Pediatric Cancer and finding a cure in Tys name always!!!!!


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  38. Tonight I allowed my teenage sons and their friend wack soft golf balls across my living room and into my kitchen, the goal being to get the ball into my coffee mug. It took an hour and I paid the winner $11. The boys had a blast and I think they were surprised I was allowing this ruckus. I did so, honoring your son in my heart.

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  39. Can't stop reading about your family's journey. What has touched me about Ty so much is that he is every kid. Your family's loss could have been or could be any of our losses at any time. The statistics your foundation has emailed me are astonishing. This blog has touched me in ways that nothing else ever has, even the loss of relatives and close friends. I'm really sorry for your loss. I wish I could found out about this blog earlier, it has really has opened my eyes.

    Thank you!

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  40. Beautifully written... I rarely reply but read your posts all the time and imagine that many people must do the same. Yes breathe in, breathe out. Grief is a hellish thing and can floor me unexpectantly 12 years on. Time helps... A bit. But I did want to punch someone who once told me that.
    The indescribable great love that you have for Ty will always be there but sadly you have a great grief to bear in exchange.
    Love to you from the UK
    Kirsty

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  41. Very beautiful!! My thoughts and prayers are always with you and your family!! Love always!!

    Summer-louisiana

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  42. My view on thanksgiving & everything in general has changed, because of your sweet boy. I appreciated life just a little more, value my family more & if it's even possible I love my son more. It's mind boggling that a family that I have never met, has had such an impact in my life. But I'm extremely thankful for it. I realized how blessed I am to have my son, & be able to kiss him, and hold him in my arms(don't mean to sound like Im rubbing it in) but it's true, these are the little things that some parents take for granted or don't do enough. And since I've read your blog, I embrace every second that I spend with my baby boy & hug, kiss, play & hold him in my arms more than I used to. So this Thanksgiving I want to give thanks to you, your family & your sweet Ty, for making me a better mom. Happy Thanksgiving:)

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