Friday, March 1, 2013

Reflecting on Hospice

Tonight I am lost.  I feel foolish.  I am sad for a baby boy that is on hospice care after fighting AT/RT for almost a year.  Sad isn't the right word.  It is so much deeper than that.  It brings back a flood of memories from when Ty was in the same situation.  His inability to sit up.  His inability to swallow.  How he eventually stopped tolerating food or water.  His "smile of the day" despite it all. 


I saw a post on a private facebook page that I am a member of.  It is a site for parents of children with AT/RT (the same tumor type that Ty suffered with).  I remain active there because I feel that I have a lot of knowledge that some of the other parents going through this might benefit.  That being said, it is very hard to watch the posts and listen to the conversations among all of these families struggling with treatment.  I recently saw a post from a mom that described symptoms I was all too familiar with.  They were trying to figure out what was wrong, what kind of virus the baby was fighting, but I knew in my gut that it was radiation necrosis and after days of discussions with doctors, radiation necrosis was indeed the outcome.  So unfair. 

A post came up today that inquired about signs when death is near.  It was a simple post asking parents who lost their child to share the signs because this father was worried.  I recognized the name of the dad who wrote the inquiry and didn't recall seeing any bad news about his child regressing on FB recently, so I sent a private message.  I skirted around the issue, asking if I missed anything about his son's condition.  I shared a very basic overview about Ty's last days (how he slept all day, how he was running a very high temperature, how he developed bed sores) but also insisted that I hoped his son was nowhere near that. 

(paraphrasing here)
"He is getting over being sick, so maybe that's all it is." said his Dad.
"Oh, I'm sure that's all it is.  Ty had so many severe ups and downs, I will pray your baby boy starts to improve soon."
But then I thought, "I should mention how Ty stopped eating."  So I did.  I told the dad that it was a huge sign when Ty couldn't tolerate food anymore.  That he threw up more and had no tolerance, even for water.  I realized that this family and their experience sounded familiar to ours.  They don't know what to expect, and neither did we.  Finally, I asked, "what kind of medical help do you have?"

"We have had hospice for a few weeks now. They come by once a week until we need them more." 

Oh no, how did I not realize this!!!  I don't know what he said after that because my head started to spin with devastation.  Why was I surprised???  The man was asking about how he can tell if his baby is dying, and here I was telling him he was probably just getting over a virus.  And I still hope he is!  But how did I not realize that his poor baby is probably on hospice care?  That he's vomiting more often because he can't tolerate his feeds anymore, just like Ty.  I haven't changed.  I maintain hope even when a good outcome, the right outcome, is impossible.  I don't regret that, but I do regret not being more straightforward with this family.  What is happening to their child most likely is the beginning of the end.  I want to call them and cry to them and tell them that everything will be okay and everything will never ever be okay at the same time. 

I'm sorry to reflect on these sad events in such detail that may be difficult to read, but tonight I have to.  Sometimes I need to write about all of the memories and pain that is swirling in my head in order to help me find peace. 

When we were sent home on hospice care the first time, in December 2010, we didn't expect Ty to survive more than six weeks.  Lou and I talked privately about our wishes, and we decided that we never ever wanted to leave Ty's side.  That we wanted to be alone with him when he died, and that we would simply drive to a crematorium (what an awful word) with Ty in my lap, wrapped in nana blankie, because no one else should touch him.  He was just a little tiny baby.  We couldn't imagine anything else.  Well, as you know he didn't die at that time.  Instead, SuperTy defied all odds.  He broke all the rules.  He got better without any real explanation.  He gave us almost two more years of joy and laughter through tears and I wouldn't trade that time for anything. 


Say what you will... this kid wasn't going anywhere :)
When Ty was sent home on hospice care in September 2012, it was different.  Lou and I watched Ty suffer way too much for way too long.  We knew that he was going to die, but never stopped praying for a miracle.  Lou, my amazing husband and the best Daddy in the entire world, had the strength to make arrangements weeks in advance.  He was the one who asked all of the impossibly difficult questions.  He had the conversation with me about buying a casket.  Do you know why we did that?  Because the only other option was a pine or cardboard box for cremation, or, if I wanted to hold him in my lap I would have to do so while he was in a body bag.  That is the law.  There is no peaceful way to do it, where I could hold him in my arms until the very end.  You can't just drive your dead child to a crematorium and see him through to the other side like we imagined.  So, we bought a casket because we wanted him to travel to the crematorium in something comfortable.  We filled it with so many beautiful tributes from all of the people he loved the most.  Lou and I traveled with him in a Hertz, Lou helped with transporting Ty in and out of wherever we were going, and we were there to press the button that lit up the incinerator.  It was the most horrific and painful goodbye imaginable, but I am at peace with it.  I still can't believe it even happened.  It's like it wasn't real.  We stood there, we watched his casket roll into the incinerator, and somehow in our semi-state of consciousness we managed to push the button together.  Not because we wanted to, God no, but because we didn't want anyone else to.  Can you imagine?  Making the decision to do that to your child? 

I do live with one awful, disgusting regret that haunts me every day.  I haven't shared this with anyone other than Lou.  I guess tonight's post is sort-of a cleansing for me. 

My last interaction with Ty when he was conscious was terrible.  I will never ever have the chance to change that and it breaks my already broken, bleeding heart.  He was whining for me very early in the morning and I told him he needed to sleep another hour because it was too early to get up.  I was grumpy and I wasn't nice to him about it. I had only fallen asleep probably an hour or two before he was waking up and I was losing my mind.  Obviously, I never imagined that would be my last interaction with him before he slipped into unconsciousness.  Remembering that, I can hardly even keep writing through my tears.  I asked Lou to please get up with him instead, and he brought Ty downstairs.  When I came down an hour later, Ty had just fallen asleep.  He didn't wake up again and I will never ever forgive myself for that.  I yearn to talk with Ty one last time more than you can imagine.  I need to tell him how much I love him, how sorry I am, and I need him to tell me that it is okay.  That he is happy.  I don't want to talk to the empty air anymore. 
 

105 comments:

  1. I know there are no words to take away your pain. I keep following your story on this blog, I pray for you, Lou and Gavin, and I try to be the best mommy I can to my 2 babies. I love Ty even though I never knew him and I will never ever forget him for the rest of my life. Ty knows you love him and he understands that you were tired that day...none of you knew it was the end, and I really hope that you can focus more on the love you two shared shared rather than that cranky morning. Ty knows you better than that. Thanks for sharing your story as always, and I hope that getting the words out today make you feel a little lighter. Hope Ty shows you some signs this weekend. Xoxo

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  2. I feel as though I have been morbid lately. I have been following FB pages of little children, some have passed, some in their last days, some, just diagnosed with the worse possible news ever. I keep coming back to you and Ty. I keep wondering why? I think somethimes, I should stop. Maybe it is depressing me. Then I realize, if we do;t listen, nothing will be done. No one will become aware.

    I always wondered if you ever, even in your immense love, got frustrated, felt regret. You did, I do. I yell and scream and I donn't have a sick child. I feel so guilty in my daily life when these days happen. I hate them. You are so human. You are a mother that has and still is, in hell. I cry for you all the time. I cry for Ty, I cry for the little ones. I just read this through tears. I want so badly to help. I don't know how. This was my small way:

    Yeaterday, I went to McDonalds with my 3 year old. They were doing the Ronald McDonalds House charity. I gave $5. I usually put the Cousin family or something like that. Yeaterday, I put Superty.org. It is my small way of trying to get your word out.

    As for your words to the father, you still hope. You still want a better outcome. I read their stories and even though, through your story, I understand now, where these children are in their disease, that, yes, their death is iminent, I still am praying and hoping for a cure, overnight that will come and save them miraculously. Just as I did for Ty. We have to. We have to hope that there is a cure to be had and that someday, no one, no child will have to endure this suffering. All of you, children and parents are so strong. You are so inspirational. But foremost, you are human and dealing with an inhumane situation. Please don't feel guilty that your last interacion was not what you wanted. Ty knows how much you love and care for him. That you were tired. That you would ever,ever, thought that was the last time. That you would never, ever, give up. It , in it's little way, even though, you think it was grumpy, it somehow shows, you still had hope. I hope this makes sense.

    Much love and hope...
    Shawna, Millbrook, NY

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  3. You gave your husband a gift that morning, those special last moments with your son.

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    1. What a wonderful beautiful perspective! !

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    2. yes, yes...Well said, above.... 'you gave your beloved husband and son a gift'! How beautiful that perspective is! how kind.... and true.

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  4. Cindy, there are no words... I can't imagine how guilty you feel about your last interaction with Ty, but I hope it gives you comfort knowing that Ty knows you love him and if he could speak to you right now he would tell you not to feel guilty for it. Pain just sucks... heartbreak sucks even more!!!! Some days when I read your blog I wish there were words that could just change everything, I wish that time could rewind and we could change the outcome. Life just doesn't seem fair sometimes, like its a cruel joke. You will one day find peace and Ty will be right there to hold you hand as you do. My thoughts are always with you, your family and Ty.

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  5. Cindy,

    I have no doubts in my mind whatsoever that Ty knew how much you loved him every second of every day and that he still knows and will carry that love with him forever. Please don't torture yourself over that. You were and are an amazing mother and Ty was very lucky to have you as you were lucky to have that beautiful angel. I believe he will always be with you. I'm so sorry for your pain.

    Ann from Buffalo

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  6. Cindy, I have been reading your story for a while, and your strength amazes me. You make me want to do something to help cure and save the future Tys of the world. Ty knows how much you loved him, and I know he is watching over you all now. I work from home on Fridays, and I see a ladybug in the room literally EVERY Friday around the time I catch up on your blog. Whenever I see one, I think of Ty and think that maybe it is his way of telling me to do more for the cause. Thank you for sharing your story and for inspiring others to spread the word.

    Christy
    West Chester, PA

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  7. Admitting to that last interaction & living with the guilt of it must be so terribly hard for you. So Thank you again for sharing. I had a very similar experience when my beloved grandmother passed away. I lived with her & loved her more than anything in the world. She awoke the night before she slipped into unconsciousness & passed away. She needed help to get to the bathroom. I tried to help her & got frustrated and grumpy with her, I was also awoken from sleep when she called for me. I was scared & tired & I did not know that would be my last conscious interaction with her. I had cared for her lovingly for so long & how could my last interaction not have also been full of love? I have never told anyone. I relive it all the time and also regret it deeply because I truly loved her more than anything. It is hard to forgive yourself. I am sure she has forgiven me as Ty has forgiven you, but maybe admitting this to you & you admitting your last conscious moments with Ty to us will help you heal. My experience has been that I used to obsess over those last moments together and feel terrible regret and guilt. That has lessened over time and I realize that knowing my grandmother that is not at all what she remembers about me & she would want me to forgive myself as Ty would want you to forgive yourself. So please do.. That is not at all what Ty will remember,he will know that you were scared & exhausted & he will remember everything good. I am so sorry that was your last conscious moment but I believe he felt all the love & knew you were there in all the moments you had with him that morning and all the moments after he passed. He knows you were with him as he was with you until the very end and beyond. Forgive yourself Cindy.

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  8. Cindy, you and ty are the loves pf each others lives. Dont for a second doubt that he knew this.
    Jennifer Negron

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  9. As hard as it is, please don't focus on that last morning. Ty died knowing that he was loved by all. You and Lou were and are the best possible parents ever. No regrets. Keep focussing on your happy memories.

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  10. Oh Cindy, tears are rolling down my face. I cannot imagine the pain you are experiencing.

    Ty was so loved, and it was written all over his face that he knew it. Your last interaction with his doesn't change that for a second. Not for a fraction of a second. He knew he was loved. You are such a loving women, he knew. Forgive yourself. You are human, and above all you are a mother, and a loving wonderful one at that.

    Sending you thoughts of love and self forgiveness.
    -Daniella, Seattle WA

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  12. Cindy,

    I doubt there was ever a mom who loved her little boy more than you did Ty. I'm sorry this haunts you, as you don't deserve it. You sound like an awesome mommie and Ty was very lucky little boy to have you. And, I know he knew you loved him as much as anything in the world. But, I still hate you have to go through this pain.

    My thoughts and prayers are with you. Much love to you and your family.

    Richard C.
    Raleigh, NC

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  13. Dearest Cindy, Remember what Anita Moorjani wrote. Telling Ty to go back to sleep was not the last thing you said to him as far as he knows. yes, that is the last thing he responded to for you - but he continued to be present with you, and hear you and was so much more in touch with your words and feelings from his unconscious state. More than we who are still of this earth and its gravity can even imagine. he knows so much more than we who were left behind do. Your love abounds. It was and is part of him in his very soul. I wish you love and peace, and I commend you for your raw, true vulnerability. You are a mama to be reckoned with! :) Marianne from California

    ps I'm not sure whee you will be in California, but I am in the SF bay area and would love a hug in real time!. Email me if this could work xoxo)

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  14. Don't ever doubt what an amazing, loving mom you are. Ty knew it. How could he not? Please don't let those horrific last moments haunt you. Although you weren't with him that morning, Lou was. Ty was not alone. All he knew was that someone who loved him very much brought him downstairs.

    Cindy, I am so sad for you and your family. You are not alone in grieving the loss of Ty. We all cry with you. We all wished for a different outcome. We all wish that someday there will be a cure for pediatric cancer. Until then, fight like hell and kick cancer's @ss!

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    1. Go away, you disgusting troll :(

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  16. I wish I could read these without crying, but it never fails. Your love for Ty has ALWAYS shown, you 2 will forever be soul mates. I have never questioned your love for your Ty and neither has he. Cindy he knows...he is watching over you and wants you happy just as much as you want him to be. Your pain breaks my heart, I am so sorry Cindy.

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  17. You were exhausted, and believe me I honestly don't think Ty even thought anything of he, he prob thought mommy is tired and daddy is taking me downstairs (he just wanted to get up). You were with Ty all day and although he couldn't speak to you, I firmly believe he heard everything you said and knew he was in a good place in your arms. You mentioned before how you wanted to scream when you knew he was passing but you couldn't do it as you didn't want to frighten Ty, this to me is something I don't think I could have done. This is what you should remember, what you and Lou did to make sure your baby wasn't scared or sad as he passed, he knew you were there, he knew his mommy and daddy loved him, he felt the love from you both and I don't think for one moment he thought mommy got mad with me this morning ... I really don't. He felt your arms around him and fell into his deep sleep with all your love in his heart.

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    1. Cindy, I read your post earlier, and I've sat with it for a time. I wanted to wrap my head and heart around it, knowing full well that as human beings we all have these moments, especially when under extreme strain. Then, we replay it over and over in our minds until we drive ourselves mad with guilt. I don't want in any way to invalidate your feelings about it, but yet, in my heart I truly feel that this is a guilt that you can let go. This isolated memory of not feeling fully "on" does not in any way alter the limitless love that was shared between you and Ty, or the indescribable beauty of the intimacy that you and Lou shared with Ty in the moments before, during and after his passing.

      Then I just saw Carmel's response, and she stated my feelings perfectly. Thank you, Carmel, for finding the words I could not.

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  18. Cindy,

    You did tell Ty...he heard every word you said to him those last hours and minutes. That precious little boy KNEW you loved him more than life itself!

    I am so very sorry you and Lou have to go through this...but how wonderful you both are to share with others your experiences and knowledge. What a gift you two give so many! I wish we could all give you your wishes back.

    All I can say is I will never quite sharing Ty and your families story with others. I continue to pray for you and Lou...for strength, peace and that the two of you continue to walk forward together. Keep smiling, beautiful lady, even through the tears. You both are amazing!

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  19. Cindy, I can't even imagine your pain. I think of Ty constantly and how blessed he was to have you, Lou and Gavin. To suffer the immeasurable pain he suffered and still smile and laugh, is a testament to loving secure home you provided him with. What happened to Ty is beyond unfair and awful. Rest assured he knew and knows the depth of your devotion and love. It's impossible not to. Before I read your post, I was going to comment on your facebook page that there was a ladybug crawling on my son's bath tub super hero toys this morning. It made me smile to think that Ty might have dropped by. Thank you for sharing your beautiful boys with us, Cindy. God Bless you always.

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  20. Oh, Cindy. Your words are so brave. In the face of the bond you had with Ty he absolutely knew how loved and adored he was. And is, for that matter. If every child experienced the love and care that Ty got from you & Lou, this would be a much different world.

    Keep watching for ladybugs. We love you, and are sending our best.

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  21. I'm so sorry you feel so much regret. I know I would too if I were you. But you said yourself that you were loosing your mind that day. You had no way of knowing. I'm sure Ty didn't think twice about it. Your last words to Ty in no way negate -- even for a split second -- everything else loving and positive you did for him.

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  22. As you wrote through tears, I am doing the same. I am so sorry you are struggling with how those last moments were with Ty. There is nothing that would have changed him knowing how much you loved him. Nothing. The best good boy in the world was blessed to have the best good mom in the world and he knew that. I am sure of it.

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    1. Beautiful said. ♡♡♡

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  23. cindy,
    ty knew. it's probably knowing how much you love him that allowed him to finally close his eyes and sleep. sending you my love and positive energy.
    debi rosenblum

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  24. Cindy:
    Your feelings are yours and they can't be taken away. It is what makes us real. I understand your regret, but you need to understand that beautiful little boy gave it no second thought. There is a reason why the day went as it did. Perhaps Ty and Lou needed that little extra time, perhaps that little extra time gave you the strength for later. Though I have questioned God for why on all this and for any baby, yet I come back to believing that God holds you and Lou special for all you went through. I think all children are born angels. It just that some are so incredibly special He needs them back in heaven to fully do all their work, while others transform into fully human. I have no answers only what my heart feels. Perhaps you lost the communicative interaction with Ty, but with all the breath I breath Ty felt your love and I believe interacted with you more deeply. He embedded himself into your soul during that time. Even how he continues to communicate with you. Its just more heavenly.

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  25. I cried reading your words. You are so honest with your feelings and you continue to amaze me. Focus on all of the positive loving and caring you did for Ty. That is what shines through. When I look at pictures of Ty, especially the ones of the both of you together, I see a little boy who loved his mommy so. That bright beautiful smile was due to the love he got from his family, especially you and Lou. We all know mommy guilt all too well. You wouldn't be a mommy without it. But that one small moment does not even begin to compare to all the bigger moments that you had with your sweet boy.
    Today I saw a little boy that reminded me so much of Ty. He made me smile.
    Sending you hugs Cindy.
    -Jennifer

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  26. Oh Cindy. I have not commented in awhile but this entry just broke my heart all over again. You are so strong and brave to reach out to other families suffering like you did, to essentially re-live your pain all over again in trying to help or provide some sort of comfort to them. You are a wonderful, courageous person and you should be so proud of yourself. Ty is with you and he knows how much you loved him more than anyone in the world. My heart goes out to all of you. Thank you for sharing.

    Lisa
    Latham, NY

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  27. I have no words that will offer the comfort you deserve - no one should have to go through what you all have been through. Ty loves you always - he knows mommy loves him so much and there will be a time when you can say it to each other again. I send you all love and hugs - wishing I could do more but promising to do all I can to share Ty's story and be a part of making a difference in this war on his behalf. SuperTy always and forever.

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  28. Oh Cindy, my heart is broken for you. I can't really add anything that's not already been said in response to your post, and far more articulately than I could ever write, but I want you to know I care <3

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  29. You telling Ty to go back to sleep, and being grumpy about it might have been the last thing you sad, but it was not the last thing Ty heard. Remember...hearing is the last to sense to go. He heard your words of love. Just because he could not communicate back, he still heard every word, and I don't think any last conversation or response with/from Ty would have been good enough when you have to let your baby go. I don't think you need to forgive yourself. I think you need to find peace with it.
    Much Love,
    Renay in AZ

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  30. Cindy my heart is breaking and tears are flowing for you all over again. How sad it makes me to think you have been carring this around for so long about not having a good conversation with Ty before he left you.Please know that he heard every loving,comforting,touching thing you said after he slipped away and it means as much to him as it would have if you HAD said it before. Ty always kenw how much you and Lou loved him and he still does now.Please don't ever be sorry for being human,it's what makes you the person you are and you are a great one! You are the best Mommy in the world and Ty and Gavin are lucky to have gotten to be your kids.God bless you and Lou and Gavin always. Don't ever be ashamed or sorry for your thoughts and feelings, they are all normal and those of us who love you will continue to do so. ...Peace..Jean <3

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  31. I cannot even imagine the pain you live with. I got so sad and a very disturbed picturing what happened based on what you wrote. I'm so very sorry!!! I'm sorry you and your husband had to push that button and watch the end. I think of you and Ty all the time and I pray for comfort and strenth for you and your family!
    Marcia,CA

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  32. Cindy -- with tears rolling down my face I am sorry that you have even the single regret that you do...and I wish I had some words to say that could make it seem better.
    The only thought I had was this...you were just being a typical, tired Mom. All of us Moms and Dads out there have had moments that we didn't wake up when the kids wanted to be up...and we all have snapped at them for it and asked our other half (if we are lucky to have one) to help out. Mostly we get the chance to do something else so that isn't our last awake memory of our kid...I'm sure the same is true regardless of if a child dies...how do you always ensure the last memory is perfectly happy...I don't think you can...but I can say this--you were being a Mom...and Ty knew (even at his young age) that you loved him (adored him).
    Don't let one moment of being human block out the fact that you did so much exactly the right way.
    You amaze me all the time...To this day I think of how strong you all were together during those last days and often think if I am ever in your shoes I pray for the same strength.
    Laura

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  34. Cindy - please be gentle with yourself. I cannot even imagine the depth and complexity of the pain you and your family feels. Please remember ... when you talk and think about Ty, it's not just about the tough times but the happy ones too. I'm sure Ty thinks about you the same way. He thinks about everything you did together and that collection of happiness is way more than just one moment in the early hours of the morning. My thoughts are with you.

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  35. Cindy I am so sad for you right now. I don't think there is a mother among us who would not agree your baby knew you loved him. You didn't do anything wrong. You are human. If you knew that would be Ty's last interaction with you, you would have jumped up. Maybe it was meant for Lou to be with him right then. I also have read that unconscious patients DO hear what is being said. He knows you were there. You didn't leave him. He was with his Daddy. You were exhausted. Forgive yourself because your bravest bestest little boy has the best mommy ever. Guilt comes with the territory...We moms want to be the perfect caregiver to our babies, and there is no doubt in Ty's mind, you are. I pray for peace for you.

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  36. Teratoid means monster-like, which is a very accurate description of what this cancer is. What it did to Ty and to kids like him is nothing short of monstrous and horrible.

    I know it is very hard that your last interaction with Ty was not what you wanted it to be. However, that makes his final moments make that much more sense, at least to me. You said as he was leaving, his eyes shot open against all odds. I think maybe that was his way of giving you one final, beautiful moment before crossing over. He briefly overcame the unconscious state he was to give that to you and your husband. Through his eyes he showed you the beauty he was seeing, and that you will share with him again someday.

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    1. I thought the exact same thing as i read this blog. That is exactly why those beautiful eyes opened, for Cindy♡♡♡♡

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  37. I completely agree with everything last post said. That being said, situations are meant to happen as it turns out they happen. we can't understand why it is the way it is but it's always meant to be , I believe it and I know it's true. These are my own opinions obviously from what I have experienced in life. I have like you looked back and thought, "oh my gosh I can't believe I said that or didn't do that" he knows how deeply you loved him, Lou got special time that morning and Ty definitely heard you throughout the day I know it for sure.

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  38. TY knows how deeply you love him I am so sorry for the word loved. That word doesn't exist in the Campbell household or anyway in my book for that matter

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  39. It is simply unbelievable how connected I'm to your family. Everytime I think about something in particular just the next day you write a blog about it. I have been thinking about Ty dying recently non stop. How did he look like how you washed him, how you put sand on his feat. I picture him laying in your bed wile you were reading to him. I picture his last smile so vividly. Cindy, he smiled to you and that was the last interaction, he opened his eyes an decided to give you something we all fell I love with, his most precious gift his smile. So no, his last time interacting with you wasn't you being cranky and tired. But you know something as hard as it may sound if you will allow me to say that, I believe it was Ty chosen time to go also because of how selfless he was, he understood how exhausting and painful this slow dying was and he made a decision that it was his time to go that day. You still interact with him everyday, his soul is here. He hears how much you love him every single day. Please remember his last smile and how he looked into your eyes. Don't feel guilty, don't upset yourself. You and Lou made the most painful decision but at the same time it was your loving hands that let him go guilt free. I miss you so much baby Ty. You are my everything.

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  40. Hi....my name is Megan. I am a sixteen year old girl living in New Jersey. I found out about your blog, actually, through Rockstar Ronan's blog. I followed through your last few weeks with your darling baby boy, and when I heard of his passing I instantly broke down crying for about 2 hours. I had a younger brother who died of a cardiac disease at 10 months old and in every picture you post of Ty I see my baby brother's smile....it's that smile of knowing there's something better beyond this world, and I honestly believe God gave them extra insight throughout their short lives as to what was coming next so they didn't need to be afraid of dying. I honestly believe my brother was one of the bravest little boys in the whole world, and I know that he and Ty are friends in heaven and they are no longer in pain and they are watching over you and me, us, my mom too. Living with the regret of missing that final goodbye is understandable, but I know Ty wouldn't want you to be sad because he loves you and he wouldn't want you to be sad. Any mother in that situation would feel the same way, but always know that Ty was just happy knowing you'd loved him (and continue to love him) every day of his short life on earth. Cindy, my thoughts and prayers are with you and I know you probably won't read or acknowledge this, but I felt the need to share my thoughts with you and to let you know that I think of you, Lou, Gavin, and your little angel baby every single day of my life.
    All my love,
    Megan <3 <3

    ReplyDelete
    Replies
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    3. I do read all of your comments and they help me find comfort and peace. Thank you all so much.

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  41. Cindy,
    What would Ty have said if you apologized for being grumpy? If you know the answer, you guys had a bond that doesn't break because of one grumpy episode. That boy knows about your love. You can see it in his smiles and his demeanor. Kids do not inherently become vivacious, he did it because of you and your family. He knew he was loved.

    I read your post earlier today. I was thinking of you and the other songs you have posted that remind you of Ty. This is going to sounds crazy, but please take the time to listen to the song "I will wait" by Mumford and Sons. It came on the radio as I had tears rolling down my cheeks thinking of you. It made me think that if Ty could send you a song to say he is waiting for the day you get "beamed up", this would be it.

    Hugs, Beckee

    ReplyDelete
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  44. Cindy, you are such an awesome mama! Please please please do not consider that your last interaction with Ty. It wasn't. You had no way of knowing he wouldn't awake again. Believe me, I have had MANY a moment like that with my three kids. I do NOT do well on little sleep and my kids know that mama does not mean to be so mean but cannot help it when she has not had enough sleep. I have been reading your blog for many months, and the love you and Ty shared is undeniable. He heard every word you said in that last day. He may have been asleep but he knew his mom loved him beyond comprehension and he died in peace in your arms knowing what amazing parents he had. I get it, I would probably be the same way, but those that loved me would desperately be trying to tell me that that last insignificant interaction did not in any way define my/your relationship with your baby. Ty had, and Gavin has the best parents in the world. Each day I aspire to be the parents you two are. As always, I am in awe of you and Lou, I think of your entire family daily, and pray for peace for you all. I hope to meet you some day. Please know you are such an amazing mama and thousands of us look up to you and aspire to be as good and loving a mom as you. xoxoxo

    ReplyDelete
  45. I think back to my last interaction with my mom, who was suffering from Multiple Myeloma (bone marrow cancer)...they were about to intubate her because she was having a lot of trouble breathing. I held her hand and kissed her... and I didn't want to let go. Mama (who was uncomfortable and grumpy) shook her hand free and asked me what was wrong. I told her I was worried about her. She yelled at me, "Don't be so da**ed stupid!" They were the last words I ever heard her say... Today, it is nine years since she left, and I think of that day more often than I would like to admit...The truth is, we are all humans. Ty knew how much you loved him...just like I know that my mom loved me... (((Hugs))) I am just so sorry... for everything... for how cancer changed your lives...for Gavin losing his best friend... for losing your beautiful Ty...I hate cancer...

    ReplyDelete
  46. My heart is breaking for you all over again. To live with these memories everyday while continuing to push forward in order to help other families is beyond brave and deeply inspirational. If only courage and determination could lessen the pain. You, Lou, Gavin and Ty are in my thoughts.

    ReplyDelete
  47. Oh Cindy. I can barely write through the tears gushing onto my keyboard, but you need to know from as many of us as possible: You are and have always been the most amazing and loving mama in the whole world to Ty. He knew your love. He knew the depth of it inside and out. He knows it to this day and he has sent you signs so you know he is okay. I can't imagine your pain to re-live this so much. Please know, that one moment of being human doesn't erase all the good you have done in life. He opened his eyes at the last moment before crossing over to share something with you that you needed to know. And his presence was with you - while you washed him and cuddled him and loved him following his passing. Please forgive yourself and remind yourself that he was loved as much as spiritually and humanly possible by you and Lou. It's because of the depth of your love that you experience such depth of pain and I wish beyond wishes it didn't have to be this way. Praying for you so much.
    Chris,Niskayuna

    ReplyDelete
  48. In my experiences with hospice, I was told that the sense of hearing is the last sense to "go" right before someone passes away. Not only is it the last sense to go, but it is actually heightened...even if someone is seemingly unconscious. So, the last words Ty heard were the last words you and your husband said right before Ty passed...not you telling Ty that you couldn't take him downstairs. In his unconscious state, he probably heard the loving words from you and Lou more clearly than he had heard anything in a long time.

    ReplyDelete
  49. Dear Cindy,

    All of your readers feel the deep, enduring love you have for Ty, and I know he felt it too. As parents, we all do things we wish we could take back, but we can't be perfect every minute. You have shown such strength and courage in unimaginable circumstances. Please know that we love you all and hate this disease that took your baby from you.

    ReplyDelete
  50. Cindy please do not feel regret. No no no......ty knows how much you love him. I'm so sorry you carry that regret with you. Please try to find a place for it. Your story and journey continues to amaze us all. I'm sad to say I learned of your story from a facebook friend later in ty's fight. I knew when he became unable to tolerate feeds and fluids and his temp was rising that it wasn't good. Being a hospice nurse myself. I couldn't bring myself to say anything about what I knew to be true. It was my hope for your family. Peace n love, Lora

    ReplyDelete
  51. Oh God bless you honey..God bless You! A very similar last conversation I had with my Mother. I was so tired. God Bless You Cindy!

    ~Always here and in my prayers.
    ~Michelle Hughes, North Ga.

    ReplyDelete
  52. Cindy- You are just the most amazing, fun, silly, loving, kind mother a little boy could ever dream of. This is what Ty thinks of when he thinks of you or talks about you to his new friends. You are thinking about your last interaction with him from your perspective- that of a 30 something year old woman. And Ty would have been considering it from a 5 year old standpoint. Mommy is tired, Daddy is gonna get up with me. I'm happy to hang out with my daddy for a little while. While this tortures you (and it would me too) I am SURE Ty did NOT take offense to your moment of cranky. Kids are so resilient and get over things so quickly. If he did have a moment of "why was Mommy cranky", I am sure it passed within a minute. Kids remember the fun, good times and you guys had SOOOO MANY of those. Every time I look at his beautiful smiling face it makes me think that he must have already forgotten the pain he was experiencing an hour ago, or last night, or yesterday... Please try to think about something else when you start to feel the guilt over this. Make yourself think about something silly that would make him laugh or somewhere special you brought him that just made his day brighter. Don't let yourself get swallowed up with the guilt. No one could ever fault you for this,Cindy. You were THE BEST Mom that amazing little boy could have ever had...

    ReplyDelete
  53. Ty will always and forever know you as the most beautiful woman in the world, the love of his life, the bravest mother. Nothing else.

    ReplyDelete
  54. Oh, my God, Cindy. You should never doubt that you gave Ty the most tremendous amount of love that any mother possibly could. I'm sure he feels as we all do that there's nothing for you to apologize to him for...what, for being exhausted beyond comprehension? I'm sure he knows that in every moment, no matter where you were then, no matter where you are now or where you'll be in the future, your heart will always be with him. Can't you just feel him right now, letting you know it's okay for you to be tired, to be human? I'm sure that someday, you'll be able to wrap your arms around each other once again and all the hurts will be washed away. Until then, trust in what you know in your heart...that your love for Ty transcends all of time and space. That is something all of us here knows is certain.

    ReplyDelete
  55. Dear Cindy,
    I can't even begin to imagine the hurt you feel
    You Ty and Lou are an inspiration for all of us
    I pray for you

    ReplyDelete
  56. Sweet Cindy,
    I read about your journey everyday. The emotions are so overwhelming at times but we have so much to learn from each other. Writing is so therapeutic. I had a discussion with my brother about the guilt of things we said or didn't do when my Mom and Dad passed away. It was just last year and I can't stop obsessing about my choosing not visit my dad the night before he died and one of the last things I said to my Mom before she passed. She had been back and forth to the hospital every week for months. Having to make decisions about intubating her. My brother and I were lifting her and I got a Charlie horse in my chest and said out loud I can't do this anymore. It wasn't the last words to her but I knew she heard me and she was so quiet that night before we left the nursing home. She had been fighting so hard to stay with us up to that point I can't get it out of my head that she chose to give up because of what I said.
    My brother feels that we have to attach our emotions to something like guilt in order to make sense of what were feeling. The pain is so great. So I believe we need to direct obsessive thoughts on the wonderful times we had with our loved ones and know that we did not cause anything to happen. Life is a miracle no matter how long or short we are here. Just to remember to be kind to each other and love to the best of our ability.
    Prayers are with you always. Love from the Wheatley family and Johnson Family

    ReplyDelete
  57. I feel like your last interaction with Ty was so normal. May that bring you some comfort. It was so normal. It's not what you wanted, but none of this is what you wanted. But it was natural, and casual, and loving, and organic. Not traumatic. Just a mother telling her son to get some rest.
    Please don't beat yourself up. Let's beat up cancer instead. It seems like that's what Ty was trying to do. And that's what I wish we could do together.
    Always thinking and praying for you & family.

    Marcela
    Reston, VA.

    ReplyDelete
  58. Cindy,
    Ty knows how much you love him. Never forget that. Love Love Love

    ReplyDelete
  59. Cindy
    Never dought yourself . You and Ty shared so many beautiful moments toghether you are the best mother in the world and ty knows that .
    Cindy we all love you :-)
    Jeanne
    Mahopac new York

    ReplyDelete
  60. Cindy HE KNOWS!! And that for sure was not and is not his last memory of YOU!

    ReplyDelete
  61. The sadness that I feel after reading this post was almost overwhelming. I wanted to shut the door of my office and put my head on my desk and sob. I restrained myself because it's not my sorrow.

    There is no doubt in my mind that Ty has been finding thousands of ways to let you know that he knows you love him.

    ReplyDelete
  62. I am sorry this is late but I have to pipe in. I'm going to relate by sharing my own story - and maybe, hopefully, my own story can help you find some peace with how it ended with Ty, as well.
    My mom's wishes were to die at home and to not be hooked up to machines to keep her alive. We honored that and we kept her home. We had hospice coming in two to three times a week. Being not hooked up to anything, there wasn't much hospice could do "for her”.
    My mom seemingly could not die. She was alive for six weeks with no fluids and no food. Her kidneys shut down at four weeks and with nothing being output, we were told hours, maybe a day or two. She went on for two more weeks. After one of those weeks, she woke up completely alert and coherent, which lasted for about two and a half days. We envisioned a life where she got that miracle and we all put that ugly event in the rear view mirror.
    In that time I had a very candid conversation with her. I asked her, in one of our many conversations "what is it like to die". And we talked about that for hours, although now, 8 years later, I can't really recall much that was said. But one thing I did hear was "I will not die with you or Bob in the room". I asked how she thought she would know. She said she had no idea but the constant hovering we were doing was something she was aware of and she was going to take advantage of a moment she had to herself to actually pass on. It was weird. I asked why she didn't like the hovering. She said it was because it scared her that we would not be able to move on without her.
    My mom's biggest fear was that her death would be the end of my step-dad and/or myself. And it was, in some ways, an end to me. I am not anywhere near the person I was before I lost my mom. I was 28 and I should never have witnessed what I did. No human should ever have to see what we saw, my step-dad and I. Nor what you and Lou have seen. We should be able to do more for our loved ones than we can when these situations arise. And we should have found cures long ago to save from having these situations arise. How anyone can think of anything health related as a money maker is beyond me. We can find a cure for AIDS (news this morning) but not cancer? Cancer is a billion plus dollar industry. Cancer? An industry? In what world do we live in that a devastating disease is "an industry"?
    I digress.
    She was right. She did not die with either of us in the room. She slipped into a coma and was gone within two days. I had the last night with her. That morning I managed to fall asleep on the bed in her room for about an hour. When I woke up, my step-dad was out running an errand. I went to the bathroom, checking on her first. She was "ok". When I came back from the bathroom, she was gone.
    One of the things I learned from that conversation was that she needed to see that we, my step-dad and I, could go on without her. When I read your blog above, that's what I got. Ty needed to see that you couldn't continue to do it all. Does that make sense? He needed to see you had a limit, too. And in seeing that, it was what he needed to let go. My mom could only let go if we could let go and I firmly believe she was not at peace with dying until she saw that we could go on. And in these cases, we have to let go before they are gone.
    This is so long and for hijacking your blog I am sorry. But I had to share my story. I see likenesses there.
    Most importantly, I absolutely love you to pieces. That you can put it all out there, that you can be so honest and so real, that is commendable. Thank you for continuing to blog and for letting us be here for you.
    Love,
    Lori

    ReplyDelete
  63. Ty KNEW how much you all loved him. Without a doubt. I pray that you can find some peace for that moment in time.
    Jennifer, Illinios

    ReplyDelete
  64. Hi Cindy, I don't ever comment on your blog, because I never want to seem like I know anything about what you're going through. But after I read this, and cried a bit, I thought of why that would happen... Why on days of all days you were too sleepy.... But that's exactly it.... You've got up with him countless times... All the time... Maybe this was meant for Lou... Maybe that last morning was supposed to be spent with Daddy, so he has a small special something to remember. As Mothers, we get so many special moments with our babies that even the best of Dads will never get. (Like that first flutter in your belly, to the intense feeling of labor) Moms just have the connection. our babies know we're always there, we always love them.... Maybe Ty wanted his Daddy to have a special moment too... I know you're a big bielever in signs.... Take that as a sign, Lou was meant for that morning... Your boy will always be in your heart, and you did everything you could for him. You both are very special parents.... Blessed with a beautiful boy taken away too soon

    ReplyDelete
  65. Hi Cindy. I feel the need to apologize. I've been feeling a bit fragile lately and had taken a break from reading your posts. It was so hard not to open them, but I didn't know if I could handle it. I'm sorry. I'm sorry you don't get to take a break from it, that you never will. I'm sorry you have to write these posts and sorry your family has to live without Ty. Hugs and tears from NC.

    ReplyDelete
  66. Your writing is so incredible. You are so present with your emotions and so open with your processing. I just know how therapeutic this is for the continual, lifelong pain. Your connection to your baby is something that can't ever leave or be take away. To miss every little thing day in and out, there's no cure for that, only coping, only surviving. I couldn't imagine a person doing more than you are, for yourself and for your family to survive, and eventually thrive, with sweet Ty's spirit, life and legacy lifting our wings to fly. We have so much love for you all. We feel your words so deeply. <3 Audra, Max's Momma

    ReplyDelete
  67. Oh Cindy, you didn't know! You were the best mom to Ty, please please please don't beat yourself up over that! Forgive yourself for being human and know that you inspire the rest of us mothers out here to be all we can be. You break my heart, you wonderful lady, you.

    ReplyDelete
  68. Reader from norway here. I found a live ladybug inside my house a few days ago and thought of you. It was very strange because it is freezing here, we have few ladybugs in the summer even, and i certainly don't know how it got inside.
    So sorry for your loss- you are so brave

    ReplyDelete
  69. This post is so heartbreaking. It is just my opinion, but I really feel that Ty would not have been phased by you telling him to sleep longer and that Lou was meant to have that time with Ty instead. You are an amazing mother and I don't believe that Ty felt anything other than your love for him.

    We continue to pray for Ty and your family. May you find God's peace in everything you do to fight for Ty and children like him.

    The Stewart Family
    Nebraska

    ReplyDelete
  70. Cindy,
    You didn't know and sleep deprivation and depression to awful things to people. Trust me, I know about that. I have a chronic illness and if I lack sleep, I can get very grouchy and not myself at all..so don't blame yourself. Ty KNEW you loved him. There was never a doubt.
    Big hugs to you,
    Andrea

    ReplyDelete
  71. Cindy. I know how you feel. my dad died when I was 18 I didn't speak to him for 2 months before he passed (knowing he was dying.) He even begged me once to talk to him. when he died I was full of regret and wished I would have said what was on my mind I was depressed about it for years. Then I realized not to live in regret but to learn from it. when my mom died 2 years ago I sat her down and we had a long talk about everything all of our ups an downs. And that made me feel more whole and accepting of what happend..
    You were tired. Had the weight of the world on you I'm sure ty understands if he knows his mommy loves him I know it will take some time but just remember you are the best mom to him. And he knows that.
    Hugs loves an ladybugs
    Meg

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