Tuesday, February 12, 2013

I'm just sad

I have had three very tough days in a row.  That's going to happen sometimes.  I am writing this knowing it will be a short post because I am swollen from tears and fighting a terrible headache from the crying I've done tonight. 

But I am okay because I am trying so hard to occupy my time doing things to help Ty, the next Ty.  It has been such a blessing and a curse.  I never want his story to end, but with that comes a tremendous amount of stress and longing.  I don't want to be working on my laptop 12 hours or more a day just talking cancer research and fundraising.  I am stressed out in a way that I have grown to preach against ever since my baby got cancer!  I can't help but feel such an enormous responsibility to make this right, and I just hope I can do something in this meager life of mine, to make a difference in childhood cancer treatments.  But I need to balance that time while practicing what I preach and enjoying my Gavin, and I need to figure that out. 

I was driving somewhere today that took me past the Putnam County Hospital where I got Ty's weekly bloodwork done most frequently.  Memories of the drive came rushing in (as always, because this isn't far from where I live).  How I would have to make pretend like I didn't know where we were going.  How I would try to distract him or redirect his questions about whether or not he was going to get "bwud-work" because he knows that means a painful needle in his arm.  Every week, at least once, he had to get bloodwork.  One time he fought me so hard, he tore off his sweatshirt, scooted out the lab and down the hall screaming, "no, no, no...." while we were waiting.  Someone walked past, having no idea that he was too handicapped to walk, and said something about how he would have a better chances of escape if he started running.  Oh, how he would have ran had he had the chance.  Believe me.  I just let him scoot and scoot away. Run baby boy.  I wanted him to feel like he had some control for as long as possible, until they were ready for us anyway.  On that day, I was grateful for a young man, new to the lab, who brought some dinosaur fruit snacks with him in his own lunch.  Whew!  That brought my Ty back to the room.

I hope that my love story with Ty lives on forever.  What he has been through alone shows how his legacy needs to live on.  His story needs to be told.  The truth is... he is my son.  Not my Uncle, my Dad, my Husband or my Brother.... all of whom I couldn't imagine losing.  But I would trade any one of them to have Ty.  I always offered myself first, obviously, and as for the rest of them... they are older and enjoyed life.  I offered them up, too.  Ty never had that chance at life.  He was 100% innocent.  It's just cruel and unfair in so many ways.  I love Ty more than anything imaginable.  Our love story should live on forever. The good news is that Ty continues to fill me with his love everyday and on my good days I can go on living life and smiling at the secret truth that I know.  Bigger things await. 

Oh how I miss his skin.  Milk and Honey.  Kissing his beautiful, full lips.  And his laugh, it is will never be forgotten. All I want is my child back. My healthy child back before all of this cancer bullsh*t that destroyed his childhood.

My Gavin is my lifeline.  I kiss him a million, trillion times a day.  Thank you, God, for him. 

58 comments:

  1. I'm just sorry..... promise to help, however I can to spread your love story. and I'm so sorry.

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  2. Hi Cindy,
    I'm so sorry to hear you have been having such a rough few days:( I just wanted to let you know that your baby sent me a special sign today that he is doing great!! A ladybug:) just think that on the days when he isn't able to send you a special sign, he's probably off sending one to one of the MANY of us who fell in love with him through you!! Thinking of you and hoping tomorrow will bring you some smiles and superty sunshine xoxox

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    1. I think that that is really cool how Ty sent u a ladybug :)

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    2. How awesome of you to share this with Cindy! Ty is out there sharing is love with everyone and he does it for his mommy, daddy, and lil bro! I know you miss him and I am sick that he lost his battle, but don't ever feel like your life is "meager" as you are an amazing mom, woman, and wife! I could never do what you are doing and I applaud your strength. You will have your days as does everyone, even those who haven't lost a child! So, you cry if you need to cry....Ty loves you, Lou loves you, and lil Gavin loves you. I look at his picture everyday and cry; I miss him and he isn't even mine. You should be proud of your sons and all they do! Ty has brought so much joy to others! Thank you for sharing everyday. You take care Cindy.
      XOXO
      Lorrie, Lansing Michigan

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  3. You are making a huge difference. Today, I am going to a hospital here in Madrid where I live and I will be delivering JoyJars to the kids on the oncology floor. This never would have happened if it wasn't for you and Ty. You have opened my eyes.
    While JoyJars will not cure anyone, they will make some sick kids smile for a little while and bring them joy! But maybe the next person you inspire WILL be the person to help find better treatment options. You are doing so much....don't ever doubt that for a second. Ty will be on my mind this morning as he is everyday. xoxo, Gaia

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    1. that's beautiful Gaia! Glad you were able to get the JoyJars in Madrid. Prayers for all those beautiful children you will meet today.....

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  4. Cindy,
    I can't even imagine the pain you are going through.
    I hope this message will at least bring a tiny smile to your face :)

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  5. I feel the same way...that I've had such a full adult life and that it's so unfair that there are so many beautiful babies who never had the chance. My grandmother passed away peacefully in her sleep last week. I miss her so much but I am happy that she lived the most epic life - she was 97. Can't get much more epic than almost a century.
    I am just so sad that Ty didn't get to live one tenth of that and that is just wrong, wrong, wrong! I'm so hurt that cancer happens to children and robs them of a life that many adults take for granted. I'm so hurt that even though I love to see pictures of Ty it is largely because he had to become a poster child for cancer.
    We think of Ty every day and wish that it did not have to be this way.
    Brave, beautiful wonderful Ty...please let your mummy have a sign that you are okay.
    Much love & hugs,
    Judy


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  6. it is ok to be sad sometimes. you are so sooo strong and you are doing amazing things right now in the name of your beautiful boy. remember to take the time and enjoy your life too. love all the way from Australia to you and your family xoxo

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  7. Hey Cindy,
    Just wanted to let you know that I'm out here listening to you. I feel so sorry for your pain and wish there was something that any of us could do that would make it better. Unfortunately the only thing we can do is let you know we are here and thinking of you
    Hope for better days ahead
    Michelle
    XOXO

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  8. I am so sorry.. Through my tears right now, I can not imagine yours. I really have no words. I only have sorrow. I am sorry. Your Ty should not have been taken. FU pediatric cancer. FU!

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  9. Oh Cindy, my heart breaks for you... I've always wonder how you can be so strong as my daughter and I just aren't half as strong as you. You are so allowed to have these moments without feeling any guilt. You have performed miracles already getting as much done as what you have in a few short months. I can only imagine the time you have put into all these projects. But you need time for you. You need your own space to grieve properly. And please don't feel guilty about doing it. Take time out for you and Gavin and Lou. You need them and they need you. Find a happy balance between work and play so to speak... Not that it is play so much when you spend a lot of time grieving but you know what I mean. Everyone will understand and will always be there for you no matter what.

    I do have to say that I love all the work you have done so far. I love the new website, it is fantastic. You are simply amazing and I can see so many good things coming out of this. I was so pleased that you finally got to meet Maya. You both are truly amazing women and will always be a force to reckon with... But remember to take time out for your self. Without any guilt... Lots of love to you and your family. xx

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    1. P.S. I believe your love story will live long after you are gone...

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  10. My heart breaks for you Cindy. We all understand that you will have good and bad days....you are still a grieving mommy. But remember all the good things you are doing for Ty.....all of this is for Ty. Enjoy doing wonderful things at the foundation and the go home and enjoy your time with Gavin. You and Lou have been through something painful and hearbreaking. I only pray to our heavenly father that he brings you comfort during your hardest times. I am always thinking of your family. I have shared Ty's story with some of my friends and have said all the things you have been working on in Ty's memory. You are not alone in sharing Ty's story. God Bless You always.

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  11. I'm so sorry for your pain but I admire your strength and courage. You are such an amazing, inspiring person, as is Ty and every member of your family. Thank you so much for continuing to share your story with us. I just know Ty is going to accomplish great things through you, Lou and Gavin. Love the new website!

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  12. Cindy, my heart just hurts and my eyes fill with tears as I read your post. Days like these are so hard, and I pray that as you heal, Ty's presence will be even more real to you. You will see him/feel him everywhere until you are together again. And yes, thank God for Gavin!

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  13. This love story will never end, Cindy. I truly do believe that the proof of God lies not in religious practices or stories from long ago, but in children. Their purity, their innocence, their depth of soul and profound joy...that proves to me that there is so much more beyond the earthly experience than we as human beings can possibly comprehend. We try, but we cannot really know until we "know".

    The work you are doing to eradicate this beast called pediatric cancer is your life's path. It is extraordinary and heroic and unfair and comes with a tremendous, inescapable emotional burden. But you are not alone on this path. I am praying that you allow yourself the space to grieve in the ways most meaningful for you as Ty's Mommy, for as long as you need, that you delegate those areas of the TLC Foundation's work where you feel most comfortable to enlist others who are eager to help shoulder this fight, and that you seize those moments of pure peace and joy with Gavin. Sweet Gavin, Cindy, is a constant sign from Ty when other signs aren't as apparent. His twinkling eyes, mischievous smile, and unique bond with Ty is proof right in front of us that there is no end to this love.

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    1. Words of wisdom, wonderfully said!

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  14. No words, just tears and love from NC.

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  15. It is just so hard at times cause of all that love. There is strength in love as you have seen. Feel the intensity of that pain ,which is love, and you will see how there is strength in there. Hug! Liz

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  16. Cindy, there are no words I can offer to make you feel "better". You are a very strong and brave woman, and I think every now and again, for as long as you need to, it is ok to implode. I hope somehow, something brings a smile to you today. Your babies, both, know the depth of your love. My granddaughter decided she wanted to bake tie-dyed cupcakes this weekend, right after I'd cleaned up the kitchen. My initial thought was Oh God, the mess. Then I thought of how your beautiful son would have loved to have been a part of something like that, and how you would gladly have allowed any mess, as long as he was healthy and happy. So we made tie-dyed sloppy and gooey cupcakes, and cleaned up again in honor of your Ty and all the other kids like him. Bless you, Cindy. I see life a different way now because of your son and you.

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  17. I am so sorry for all the pain you are in. Just wishing you a peaceful day!

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  18. Cindy, by sharing Ty's story, you have already helped and touched more people in that "meager" life of yours than I probably will in my entire lifetime. I'm so sorry you're feeling so sad and I hope this rough time passes soon.

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  19. Your love story will never end. He is with you every day. He is in your heart, Lou's heart, Gavin's heart. He will live on through all of you.

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  20. My heart breaks for you every day Cindy. Every single time I look at my three year old son I think of Ty and your beautiful family. Sending you lots of love from Charlotte.
    Sarah

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  21. Dear Cindy, thank you for posting even during your darkest days. We think about you and your family and Ty all the time. And we need to know that you ok , you are not giving up . My six year old daughter is a cancer survivor. We were spared the worst but once cancer touched my family, I was forever changed. And it was such a profound change . It was mostly a good change but came with some sideeffects. God works his miracles in so many ways. We just need to believe and to hold tight to his love and promise. Thank you for doing what you do for all the kids and families who are in the battle of their life and for those who are yet to face that battle. Because of you they will never stand alone in the face of pediatric cancer.

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  22. Mark and Lisa SanfilippoFebruary 13, 2013 at 12:58 PM

    Yes...Bigger things truly do await...so much Bigger than we can imagine or understand...

    Mark and Lisa Sanfilippo
    Fishkill, NY

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  23. Oh Cindy, my heart is just breaking for you. Ty is such a special little boy and you are so lucky to be his mom. I have no doubt that your love story will never end. I hope that when I get to heaven, I can meet you and Ty - toghether, the way it should be. In the meantime I promise to honor his amazing spirit by being the best mother I can be to my kids and being an advocate for pediactric cancer research and the TLC Foundation. You continue to be in my daily thoughts and prayers. -Kasey Diotte

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  24. Cindy...I'm so sorry for our good fortune. The good fortune that has been bestowed on everyone of us that read your blog! It comes at Ty's, your and your family's expense. It makes us hug our kids tighter, play with them longer and love them better! I would give all of that back for you to have your precious baby boy back with you but if that can't be then I will take that good fortune and cherish it and never take one bit of it for granted! Your life is not and could never be meager! It is bigger and more important then even you may know right now. As the sorrow starts to lift a bit and progress is being made hopefully you will see and know what all of us see and know...you are childhood cancer's biggest fear..you are making a difference! Thank you for everything you are doing in Ty's name!! Kim, NJ

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  25. I have to stop reading your blog at work! I end up with mascara half way down my face and red eyes !! You are so entitled to feel sad, of course you miss Ty, he was beautiful and so so precious and I think he is there in everything you do. You will be the reason that some parents will not go through what you are going through, and I wish someone else had pushed research forward a long time ago and Ty could have been cured. I always thought some miracle would pull Ty through, it is hard to reason why these things happen. I cherish every day even more with my children because of your blog and for that I thank you. Hopefully tomorrow will be a better day.

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  26. Awe Cindy...How I wish I could take the sadness away! You will find the balance you need. I will encourage you...pray for you...and hold you in my heart.

    Don't worry...you have already done so much. Give yourself a break and know that you do not have to keep on fighting cancer 24/7. Enjoy Gavin and Lou. Enjoy life. While fighting for the next little boy or girl is important, honoring Ty by living is important too. Be Ty's hands, feet and eyes on earth. You know he is happy and healthy and patiently waiting for you all to join him (the blink of an eye for him!) so try to balance work and play. You deserve it!

    He is hoping, praying the rest of your week brings you smiles, love, hugs and signs from Ty.

    Love from Nebraska

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    1. beautifully written! You've taken the words out of my mouth...

      Cindy - hugs to you - it's OK to take time for yourself and your family. I know you feel the urgency in making things right - but these things take time so you have to give yourself a break and know that you're doing a great job, an important job and in order to go the distance, you have to cut yourself some slack. You will do great things, are doing great things. Trust in that, be kind to yourself.

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  27. My heart breaks for you...To hear your pain in your writing is nothing Im sure compared to how you are feeling! Your love story with Ty will never end, thats the thing about it.... it'll live on forever!! And one day your soul will be one with his again! Until then live each day the way he would want to live! You dont need to be a fighter 24/7 and you deserve to have fun and live life! I hope today is a better day than the last few!

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  28. My heart breaks for you,, dear Cindy and your loving family. Always hold onto the memories and those ladybugs and rainbows will appear soon knowing SuperTy is always watching over all of you. God Bless :)))

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  29. No words, just tons and tons of tears and love♡
    Much Love, Geraldine Sargent

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  30. No words, just tons and tons of tears and love♡
    Much Love, Geraldine Sargent

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  31. No words, just tons and tons of tears and love♡
    Much Love, Geraldine Sargent

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  32. Cindy I am so sorry you are having such a ough time right now. Everyone has bad days, but you have so much more on your shoulders and in your heart to feel bad about,you have to break down sometimes to clean out your body of all the hurt and hate and werrieness.You will get back up and push forward and do what you have to do for Ty, for Gavin, for Lou and yourself.You will go on for all the other Ty's coming down the road who will be cured because you didn't give up!Rest when you need to rest, cry when you need to cry,and work when you need to work, but remember Ty is with you, he is IN you and he will help you go on.He is so proud of his Momma, we all are. Sending you prayers and some big hugs...Jean <3

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  33. God love you Cindy, my heart breaks for you, how I wish you had your baby back in your arms.


    Michelle, North Ga.

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  34. I love you too. I am so sorry. You, Ty, Lou, Gaga are so special we will never forget about Ty EVER. I will wear my new Tshirts in honor of him :)

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  35. Cindy I so agree with you about lifeand love. It is hard to talk about it but eventually we all go to heaven. Children should not! I lost my father a few years ago and that was the first real pain I've ever felt and it was horrible. I had lost my grandparents (that is a natural part of life) this was new to me. Someone told me that losing a parent is also a part of life and it got easier for me. I only say this because you talk about God a lot and I want you to know that your pain is horrible and that we are behind you helping you and Lou save children.

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  36. Oh Cindy I feel so horrible that I can't make it easier. The pain is something I never wish to experience especially when it suddenly crips on you. I would imagine waking up is the worst because once you open your eyes you still confused because your soul isn't fully back yet from traveling to visit Ty, even if you don't get to dream about it yet, but then you are fully awake and the heaviness just sits on your heart, Ty isn't here anymore. I wish I would have the power to study Kabalah deep enough to be able to connect to Ty and send you a message that he is okay. But as a mom, it's never enough. We feel our babies are okay in our care, because we are the ones who know the best what they like and don't how to comfort them how to hug them and kiss them. I know you love him so so much. I know anyone would have given their adult, life to save Ty because he deserved to live so much especially after the horrific suffering. He fought until the last moment. The pain was just too much Cindy, and at some point he felt that maybe just maybe you will let him go guilt free where he can be healthy. He knew he needed to prepare you and he gave you a month of beautiful smiles, hugs, a date In a park. So sorry you couldn't get more. But you know what I find beautiful Cindy, is that you also have an amazing memory created in this blog, and I think he made you write it, you know why? Because one day, when the sun is shining and you are sitting outside and suddenly you want to know what was Ty like on sep 22 2012 for example and you can go to your blog and read what happened on that date and what beautiful smile he gave you in that date. This blog was a gift Ty left you, it's a description of every move every smile every laughter and every tear day after day. It will never go away. You can always know and remember and remind your self and read about any beautiful day you spent with him. One day, when the pain is not as sharp you will read this blog and it will be a dairy written to you by Ty in his 5 powerful years here. I almost wish your time here will pass fast enough to meet Ty but long enough to enjoy Gavin and to continue to give him love and share his love for you. I love you Ty and I miss you so very much.
    PS thank you so much Cindy for commenting on my shutout of love to Ty on Facebook. I wish I could scream it everyday loud enough for him to hear and loud enough for everyone in the world to know that there was a boy Ty and he deserves us to support his mama in anything and to carry his legacy.

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  37. My heart breaks for you. The pain! I can't imagine. I'm proud of you though, for what you are doing in Ty's memory and your love for him.

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  38. Just sad too. I would gladly offer up myself as well to have that sweet baby boy back... Or any of those little warriors. So unfair... Praying for better days ahead for you Cindy.

    Missing you everyday, Ty!

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  39. It is so unnatural and cruel to outlive your child. I have two sons and the thought of them going before me is unbearable. As their mother I would crawl through hell if I could guarantee they will have long, happy lives. I know I can't, and my heart breaks for you. I found this blog a few weeks before Ty died, and I have been drawn to his story ever since. What a beautiful child he was. I hope you know that strangers are rooting for you and your family as you try to heal. Ty's story has inspired me to be grateful for every moment I have with my boys. We are looking forward to jumping in muddy puddles soon in his honor. Thank you for sharing your love story and know his life has touched so many who never got the chance to know him.

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  40. It's only been almost 4 months since you lost the love of your life, Cindy. Have faith, you will find the balance, you need more time.

    Has anyone suggested looking into some sort of meditation? You have such amazing insight. I imagine a healthier, happier and more balanced you. I know you can do it. Take care of yourself.

    Love always,
    Heather

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  41. Cindy, I agree. NO child should ever get cancer it is 100% cruel. I can't even begin to wrap my head around that even after losing my Own father to cancer.

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  42. Thinking of you and praying for you all. Telling Ty's story is just the beginning, I just know it!
    Jennifer, Illinois

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  43. There are no words I can give to help you and for that my heat breaks. You and your family though we have never met have become part of my family. I pray for you all daily and try to get Ty's story out in every way I can think of. After telling my 5 yr old daughter all about Ty she has asked that I give her a piggy back ride to bed in honor of Ty. I thought I would share that to hopefully bring a smile to your face. Thinking of you all and praying always. Hugs!

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  44. There are no words I can give to help you and for that my heat breaks. You and your family though we have never met have become part of my family. I pray for you all daily and try to get Ty's story out in every way I can think of. After telling my 5 yr old daughter all about Ty she has asked that I give her a piggy back ride to bed in honor of Ty. I thought I would share that to hopefully bring a smile to your face. Thinking of you all and praying always. Hugs!

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  45. Cindy & Lou,

    I have been absent for a little while and just caught up. God, you two are so strong it amazes me! I know you feel like you are losing your mind, and you are greiving! lease, I talk to myself all the time and I swear I lost my mind years ago! ;)

    So funny that Gavin asked you if he could say shit! My son Nicholas when he was two we still lived in Long Island. Of course, the LIE gave me this incredible road rage and sadly I would spend quite a bit of time with my middle figer out my window as I beeped the horn and yelled out asshole! Once day while we were driving, I beeped the horn because my friend passed us on the opposite side of the street and there is my 2 year old in the back seat with his hand out the window yelling ash-hole! I couldn't help but laugh when I read that. Also my Alex for some reason thinks that I have to watch him go to the bathroom because I am his mommy and that is what mommies do. Who can argue with that, right?

    Ok, back to your strength. I do NOT know how you do it. How you surround yorself with talks and thoughts of Cancer all day long. I would imagine if I were you that I would run from the word Cancer and wouldn't want anything to do with it. But like I have always said, you are amazing, You too Lou! :) I am not nearly as amazing as you two. I envy both of you and you are my hero's!

    I am happy to hear that you went to the doctor and are trying to get your health in order, that is so important! You can do it because you can do anything. I know you haven't seen signs of Ty lately, but he is with you! You can't see the wind but you can feel it right?

    ((((Great Big Hugs))))

    Joy Marielle
    Baltimore, MD

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  46. I know it's bad now. It will be for quite awhile. I promise you though, that through your work, and through all of us, your Love Story will live on...Forever!

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  47. I know it's bad now. It will be for quite awhile. I promise you though, that through your work, and through all of us, your Love Story will live on...Forever!

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  48. When I saw the title of this entry, it reminded me of an old post back in maybe September. You wrote how sometimes Ty would say " I'm just sad..." Sweet Ty.... you are so loved and missed every day. Cindy, we love you,Lou and Gaga as much as we love Ty, this is because you are all one..
    Peace and lots of love always xoxo

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  49. There's no greater love than a Mothers love for her child.

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