Monday, March 4, 2013

What a wonderful network of support this blog has blessed me with.  Thank you so much for the wonderful comments, emails, messages and gifts I received over the past few days.  So many people have reached out to offer me comfort and to tell me that what I’m feeling is okay. 

I can’t change what happened, and my regrets will never go away, but I do agree and believe you all that Ty knows how much I love him, that he could hear me when he was asleep right into his final hours. I even believe he was listening as I read him book after book after book throughout the entire night after he passed away and lie cold in my bed.  I felt calm, as if he was still in that room with me, and I couldn’t think of any other way to let him know that it was time for peace so I read to him.  The coroner wasn’t coming until morning, so Lou and I had one last night with him resting between us.  I remember feeling so scared knowing that it was the last time.  I thought I would never be able to sleep again without him there.  Even that night, obviously I couldn’t hold him or curl up with his arms wrapped around me and the finality of it all was and is torture.  I just looked at him, cried to him softly, kissed his cheek, touched his hair and whispered in his ear into the wee hours of morning.  At some point I drifted to sleep for an hour or so.  I will always struggle with those memories because they were obviously the saddest I have ever/will ever experience, but there is also so much beauty and perfection in how Ty left this world.

I am very proud of what we have done to honor him over the past four months.  The TLC Foundation has the most wonderful volunteers and dedicated interns who are helping us to make a difference in this very long, but very frustrating battle.  Frustrating because, for example, the implementation of the government sequester resulted in enormous budget cuts across the board, including healthcare.  Childhood cancer research will take a huge hit, and it was already grossly underfunded.  These are huge steps backward and it is a nightmare.  The effect this will have on pediatric cancer research is nothing short of horrifying.  The unexaggerated truth is that more children are going to die now that research is being cut.  There are kids who are clinging to hope as they pray for new treatment options, just as we were.  Parents who are trying to keep their children alive until new, promising options become available.  Much of the existing research and progress being made will now come to a halt.  Future research will not be funded.  

As a last minute resort, I pulled together a press release to express how incredibly serious this is when it comes to childhood cancer and shared it across a wealth of national broadcast media outlets.  No surprise that they steered clear of this, but how I wish someone of influence in the media would embrace this cause and speak out on behalf of our children.  We need so much more people to get behind our children and fight for them.  The good news is that the people whose eyes are already open, like each and every person who reads this blog, are powerful and passionate and determined to make a difference.  Thank you.


Over the weekend, our friends at DV Depot and Big Hungry Bear Productions donated their equipment, time and talent to tape footage for our upcoming launch of The Muddy Puddles Project.  We wanted to create a video that we could leverage to share Ty’s story, raise awareness and announce the project.   We are working so hard on the foundation and everything involved.  We can’t wait to share updates with you all on the partnerships we have been exploring, the research investments we are looking to fund, upcoming fundraisers and the increased media coverage we have secured in support of the general awareness initiative.  In just four short months, we have accomplished so much thanks to all of you. 
 
Gavin helping

Friday was a crazy day for me so Lou picked up Gavin from preschool and spent the entire evening with him. That night he shared with me a conversation they had, and it made me cry a couple of those big tears that are simultaneously happy and sad.   

“Do you remember when Ty could walk?” Lou asked Gavin.
“Yeah,” Gavin answered, looking around at his toys and seeming very distracted.
“Do you?  Really, Gavin?  Do you remember when Ty could walk?”
After a few seconds of looking disinterested, Gavin said softly “Come here, I want to show you something , Daddy.”  He took Lou’s hand and pulled him into the den.  He sat on the floor and started scooting like his brother used to do. 
"See?"
I hope he never forgets those days with his big brother. 

32 comments:

  1. Praying for you and Ty and the whole family! Ty has taught me to let go and have fun and let my son get messy and enjoy the little things! Ty has changed my life! I am a better mom because of Super TY! I cry for you, pray for you, love all of you ! I share your story every chance I get! Thank u for sharing ur amazing son with the world! I support you 100% and wanted you to know that ur little man had truly changed my life for the better!!!!!! I will never look at a muddy puddle the same again, I will never look at anything the same again! Xo Nicole

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  3. Cindy,

    What about Fox? I bet they'd cover this in a heartbeat. Did you send the video to them. I am thinking specifically about Mike Huckabee and his show, maybe even Megyn Kelly. Can we help you in reaching out to them?

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    1. Just to follow up, I have contacted Megyn Kelly. I will report back if I hear anything.

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    2. Also contacted Huckabee and O'Reilly. If I hear anything, I will let you know.

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    3. I'm so glad you did that! I was going to suggest the same thing. I feel strongly also that someone from Fox will cover this story. Maybe it would be helpful if more of us contact them...

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    4. I went onto Fox' website and got all three hosts contact info from there and then I followed up on their Facebook pages. Megyn Kelly's fb is not very active but O'Reilly and Huckabee's fb are. The more the merrier. I came from it with the angle that the networks wouldn't touch this.....which might entice them.

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  4. Reading that part about Gavin imitating his brother, my heart burst. Really. All that love, I can just imagine him doing it and it really is something I would cry over.

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  5. Go Ty. Go Gavin. The booty scootin brothers!!

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  6. Cindy - I dont know if this is a long shot or not, but maybe try WPLJ radio and/or WHUD. Maybe you have already but thye may be interested in getting the word out. Worth a shot.

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  7. Wow Fox News is a great idea, I agree Huckabee or Bill O'Reilly, maybe?

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  8. Awwww my goodness!!! I love thay Gavin remembers how Ty walked...it touched my heart. He will always have Ty in his memory and heart. I'm glad you feel better but just like the rest here have said...it is ok to feel what you are feeling. Ty was with you in spirit that night. He knows how much you, Lou and Gavin loved him and always will. Your such a wonderful woman and everything you are doing will bring the attention of so many. Ty is such a lucky boy to have parents like youband Lou. You guys are awesome. May God continue to bring you comfort.

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  9. Awwww my goodness!!! I love thay Gavin remembers how Ty walked...it touched my heart. He will always have Ty in his memory and heart. I'm glad you feel better but just like the rest here have said...it is ok to feel what you are feeling. Ty was with you in spirit that night. He knows how much you, Lou and Gavin loved him and always will. Your such a wonderful woman and everything you are doing will bring the attention of so many. Ty is such a lucky boy to have parents like youband Lou. You guys are awesome. May God continue to bring you comfort.

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  10. Without fail. Everytime. I am left speechless, crying and in awe of you and your family. Thank you for allowing us all to be a part of your family's journey in what I can't bear to imagine being real for any child, any parent, anyone. Period. You, Cindy are such an inspiration to everyone. I admire your ability to be open and honest in the most raw and gut wrenching ways. You, Lou, Gavin, and of course, SuperTy, will help to change the world. I realize it may seem like an uphill battle, or at times perhaps as if no one is listening, and why wouldn't EVERYONE want to listen and do whatever they can to help fund, volunteer or help spread the word about pediatric cancer. My family and I will certainly do whatever we can to help support this cause.


    I also wanted to share with you that I was a hospice nurse for awhile - and while I am a spiritual person and believe in God, prior to being given the priveledge to work at hospice, I wasn't sure how I felt about Heaven and what happens to those who leave this world. Well, I will tell you being a part of hospice, and a part of many families most intimate journeys with a sick loved one, has forever changed my thoughts and emotions on this. I saw first hand, numerous times, things I can't explain or put into words. I am confident that SuperTy is having a blast in Heaven, and knows your every thought, your everlasting love for him, and sees all the hard work and devotion everyone is putting into his incredible foundation. Please, please, don't ever stop believing this. He is with you in all ways, always. Thank you for helping to make this world a better place, and thank you for reminding us all not to take people or things for granted.
    With love,
    Shannon

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  11. We are excited too to continue seeing all your hard work. Thank you.

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  12. Sending love to all of you Cindy - I have to believe that Ty is safe in heaven surrounded by loved ones and being cared for until the day you all can be re-united. And I have to believe that although it will be a lifetime before that happens - for Ty in heaven it will only feel like moments until you're there.

    Yes I too wish the media would share this story - and more then just a 5minute blip buried in a newscast! But don't give up hope - keep doing what you're doing and we'll keep supporting you :) As your reach grows, they'll have to start taking notice!

    And sweet little Gavin - he won't forget Ty - just keep talking and sharing Ty with him and he'll never forget.

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  13. I saw this in our local paper and thought I'd love to see Ty being honored at a walk/run someday like this. www.rockinontherun.org. This run in particular benefits pediatric brain tumor research and awareness.

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  14. You guys are amazing! I don't think it is humanly possible to love a child more than you love Ty ❤ Thank you for all your hardwork with your foundation!! Good things are to come because of you ❤❤

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  15. Thank you, Shannon. That really helps to hear it coming from you and your experiences as a hospice nurse.

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    1. Your welcome, Cindy. I'm glad that you find some comfort in that. Please try to remember that in the dying process the hearing is said, not only to be heightened, but the last thing to go. I believe this with everything in me from my time spent with hospice and the amazing, end of life experiences I encountered over and over. I am positive Ty heard everything you and Lou said, and I'm sure he felt every kiss. Ty passed when he felt most at peace - and that was when you and Lou were with him. To many this may not make sense or may even sound odd, and to others it will make perfect sense. Even the dying, although yes, they are often times very sick, have shown the ability to 'hold on' or not 'let go' until they are fully at peace or have 'resolved' their fears. I have been a witness to many 'holding on' even when you can't explain how, until a loved one comes to visit - perhaps from out of town, or not letting go until a loved one isn't in the room - perhaps they couldn't be fully at peace knowing this would be their last memory. But clearly, Ty was at peace, felt the love and presence of you and Lou and even Gavin - even if he wasn't in the room. He felt safe, and was able to pass peacefully with the two of you next to him. What a beautiful gift you both were able to give your sweet sweet Ty.

      With love,
      Shannon
      Ohio

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    2. These thoughts are just so beautiful in every way. Thank you Shannon.

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  16. Cindy I re read your post a again Oh; I remembered where you caught me .. And my regrets will never go away.. Cindy you are the most amazing mom in the world.

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  17. I had to read the moment of Gavin and Lou few times because I just couldn't believe how sweet and how powerful this moment was. How amazing is Gavin that that's how he accepted Ty's walk as moving on his butt. Kids are so unique in the way they show and express things. Just wanted to share that two days ago I was very sick and didn't want to get my boys sick so I asked my husband to lay down and give them goodnight kisses instead. By the way I was reading your blog right then and suddenly I heard my 4yo hysterically crying that I couldn't lay down with him. My husband kept telling him that mommy but he couldn't grasp it. I walked into the room already emotional from reading your blog and suddenly he just hugged me and said that he doesn't want me to get sick and die. Just like Ty because I always talked to them about Ty. I thought it was so sweet and sad at the same time. But I'm so happy they are receptive and aware and will grow up and make a difference in the world. Which brings me to the point to say that this is so fucking unfair that our babies are being so ignored and that the research is so underfunded. If you have any ideas or suggestions cindy please lead us. I will follow you blindly :)). I also want to say it loud and clear again you are the best mom in the world putting everyone else to shame. Never ever did Ty ever think he was not the most loved boy in the world. I miss you baby boy.

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  18. Love and Prayers, Always! You are the best!
    Terri from IL

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  19. You are so raw with your emotions and that is what is helping awareness of this MONSTER. I never knew the ratio of children and cancer. I read your blog often and hold on to my 10 and 8 year old closer. Just today my 10 year old boy drew with a permenant marker of red under his nose to get his sister to laugh.This is with the hustle and bustle of trying to get out the door. I held it in and calmly told him to wash it off. I explained to him IT is funny,but lets hold off on that in the morning.
    Did you notice the ray of light between Lou and you? It just has to be a smile from Ty. His glorious smile shining down on you guys as you battle this up hill fight for funding and awareness. He is there watching you just when you don't think he is. Keep swimming and NEVER EVER GIVE UP!
    One more thing FUcancer for giving this awesome Mama of two and overwhelming feeling of guilt! Ty was there with you the whole time and never ever doubt the love of a child. I know it is hard and I would be feeling the same way. Ty is in all of our hearts and spreading awareness.
    Peace

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  20. Hi Cindy,
    I hope it's ok to tell you this on here but I fought with myself all day and felt I have to let you know. I had a visit in my dreams last night from Ty. I know I never knew him but it was him.We went for a ride in a plane or helicopter( I'm not sure). I have never flown in my life and am afraid to try, but this little boy sat right up front next to me in the cockpit ( I guess) , in his own little seat and pointed out all the beautiful stars.It was amazing and beautiful and he made me feel so safe and happy! It was like he was so proud of these stars, like they are his. after we got back on solid ground the sky was all cloudy, but we looked up and the clouds parted and again we were looking at all these bright stars and then all the planets came into veiw like they were being brought down close to us so we could see them. It was the most amazing sight and so peaceful. I feel like Ty wanted to share this new world with someone,I don't know why he chose me but I am honored to believe he did. I also feel that this need to share it with you is because he wants you to know he is happy and smiling his big smile and having fun.He is watching those stars with you.Please don't think I'm a crazy, I have been following your story for so long and have cried with you and prayed with and for you all. I do feel that sometimes I am more open to these night visits and get messages to share with families who may not be able to see them themselves yet. You will in time I promise you. ...Jean <3

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  21. Gavin's conversation with Lou is so incredible. I loved reading about it and it's just so obvious how much Gavin loves and misses his big brother. So touching. I also just read your other post about your last interaction with Ty while he was conscious and had a hard cry by myself about it. I can't imagine how you feel knowing how awful you feel about that last interaction. I know it must be so heart wrenching for you. And the truth is you will probably always live with that regret, but you should be reassured without any doubt that Ty knew and continues to know how very loved he was by you and his entire family. There is just no doubt about that - even in that moment when he was whining. You are a super mom, but you are also human with feelings of exhaustion and frustration from time to time. You need to forgive yourself because Ty already has. Love to you all. Sharon Bryant

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  22. Every morning on my ride to work I listen to music. This was always when I would pray so hard for Ty, for some reason early morning I always think of him. There is a song by Hal Ketchum that makes me think of you every time. It's called Satified Mind, its about losing a love and being left behind. Really has some good words. He also sings Hang in There Superman, always reminded me of your boys and their super heroes!!
    Love and prayers to you! Terri

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  23. Hey Cindy, Just wanted to let you know that I was thinking about Ty tonight and how very special you and your family are. More than words can express.. I think about you all often.
    Love, Emily (caryns bf :) )

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  24. Hi Cindy! I have read and reread this blog posting over and over. I can feel your pain and emotion in this blog and and it just breaks my heart. After reading this the first time I went back adn reread the blog from start to finish. Your family is always in my heart and in my thoughts. I continue to spread Ty's story to everyone that will listen. I hope you never doubt how much love and support surrounds you and your family. We all love our SuperTy! Stay strong Cindy....gether we will make a difference!

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