The ocean didn’t swallow me whole


 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]
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51 Comments

  1. heather

     /  May 28, 2011

    Maya- I am so happy to hear that you smiled & had fun playing with your twins!! I’ve heard that the ocean is very therapeutic and sea salt helos cleanse the body of negativity.. hopefully it will help you have a peaceful nights sleep and amazing dreams of Ronan. I don’t get people and why they can’t be supportive. Maybe they are jealous to see someone go through the worst thing possible in the world and still come out sane, strong and be even more thankful for what they have in life? Let them bask in their self- pity because you have made so many amazing wonderdul moms want to be even better ones. I read your letters every night before bed… not always a great idea because I usually end up crying for you but at the same time through all the sadness my heart is filled with more compassion and love for you than I can say. Ha, that kinda sounded creepy but you are amazing and I am inspired by you and Ro’s story.
    As for whomever thinks perfection doesn’t exist… just as Maya said EVERYONE HAS THEIR OWN IDEA OF PERFECTION!!! My life is far from ‘perfect’ to outsiders but to me it is beyond perfect and I wouldn’t change a thing. Perfect isn’t material, perfect is living with love, compassion, support, respect, happiness, filling the days with laughter and smiles… ♥

    Reply
  2. April

     /  May 28, 2011

    Maya, whoever uttered those evil words have hate in their hearts! Your family is perfect…ALL 5 of you! All that matters is the love and commitment you have for your family and the drive you have to push forward in the fight to kick cancers ass! I pray those words do not turn around and bite the author in their own ass!

    Reply
  3. Laura

     /  May 28, 2011

    Just total love to your entire family. So glad you are all together. Glad you see the joy and pure pleasure of your boys. Glad you all are able to soak up all the love for each other. So wonderful you are away together..don’t let anyones hurtful words or judgements on you…no one has walked your exact path..no one has rights to judge. Be careful at night swims, make sure someone is watching over you, besides your beautiful Ronan. I’m thrilled you were able to smile and see the beautiful way your boys are being with each other. All our love to your entire family.

    Reply
  4. Kate

     /  May 28, 2011

    totally agree 100%. perfection is love and health and togetherness. perfection is giving to others and feeling gratitude for what you have. and ronan is perfection in and of himself. xoxoxoxoxo

    Reply
  5. Carolyn

     /  May 28, 2011

    Maya, you are so brave, and to me a hero, for all you have done for your family. I wonder if maybe the author was trying to say something comforting, so that you didn’t feel like everyone else has something that you have lost. I don’t know, but I just couldn’t understand if any human could intentionally be cruel to your strong, beautiful family. I know that I say the wrong thing sometimes, when I am trying hard to say the right thing, and maybe that’s what happened. Either way, there are so many of us thinking daily about you and your beautiful family, and wishing that we could bear some of your pain for you.

    Reply
    • Carolyn

       /  May 28, 2011

      I am sorry, I found the comment and you are right. That guy must be trying to get attention in the most dispicable way possible. I am sorry there are people like that out there, but they are irrelevant when you have so many people who care about you.

      Reply
  6. Jaime Harris

     /  May 28, 2011

    Maya, keep on doing what you’re doing to heal. I am continuing to keep you in my prayers. I’m glad you were able to smile a little today. God bless you and your family!!

    Reply
  7. Katie R

     /  May 28, 2011

    Maya – I, too, saw that comment left by that stupid person. I’m mad that they did that to you!!
    I’ve posted on your blog many times and I know that if I knew you we’d be friends!
    From reading your words, I can sense that there is a little healing happening. It’s small but it’s there. Keep posting, keep writing to Ronan, keep letting out all that emotion.
    Always thinking of you and Ronan.

    Reply
  8. Jennifer Jones

     /  May 28, 2011

    I wait for your post’s daily and understand when there is not one waiting for me in my inbox….I never thought of perfection as the definition you gave, You and RONAN make me think everyday and even though life is not easy… it can be our own version of perfect! My little monkey lays next to me when I am reading about “RONA” and has a million questions that all start with ” MOMMY”…. sometimes I just want to read and absorb everything you have to say, so I can apply it to my life and be MORE PATIENT, MORE KIND, MORE FORGIVING… words n thoughts give me strength and while some say that your life was not mine and that I should not have such strong feelings for you and Ronan, “because I didn’t even know you”. I say… I do know you… I see your baby’s blue eyes whenever I read your blogs. Be strong Maya you and Ronan have brought so much possiblity back to my life. I am forever thankful! ~ love me and my three~

    Reply
  9. Starlene DeBord

     /  May 28, 2011

    Maya,

    I LOVE reading your posts!!! My heart goes out to you! You are so amazing!!! And it is totally unbelieveable to me that someone could have the audassidy to write any negitive comment! But I guess you just gottta love them…because hate thrieves on hate…it only can be abolished with love! My mother always told me while I was growing up to thank your lucky stars for your health, because all the money in the world cannot buy health or happiness for that matter! You are sooo blessed to have such loving friends and family! It’s times like this that you find out who really loves and cares about you and it seems that you are surrounded by this!!! So in my opinion you are the luckiest person alive besides the journey you just went through!! You still AMAZE me with your strength and the paths you choose to keep going strong through all of this!!! While keeping it all so REAL!!! Sending prayers and hugs!!!

    Starlene DeBord
    sdebord9763@yahoo.com

    Reply
  10. Val

     /  May 28, 2011

    Maya , no one has the right to “tell” you anything. In any event your descriptions of your day show how children are more resilient than we. Sure the boys are certainly hurting but the differences you see – getting along better – are wonderful. Again the way you describe your grief and the swim into the ocean; the ocean being a metaphor for your deep pain.
    Wishing you the strength to get thru these horrid days.

    Reply
  11. Marquita Ward

     /  May 28, 2011

    So sorry to hear there are those who are being unthoughtful, keep on keeping on Maya.

    Reply
  12. Lea

     /  May 28, 2011

    Only you can descibe your heart and your life…for it is only yours to describe! Don’t allow someone elses thoughts to discourage you. Keep on keeping on….for there is still alot in life to be defined!

    Reply
  13. Trish

     /  May 28, 2011

    Perfection comes in many different forms and often we don’t realize what’s perfect until things radically change for the worst. Simplicity is perfection. Happiness with family, laughter and friends. May the ocean and your family begin to heal you. Its obvious and understandable how broken you are. I wish I could shoulder some of your grief.
    Please, don’t swim in the angry ocean when it’s dark again. We love you and would hate for another tragedy to happen to you, to your boys.

    Reply
  14. Annie :)

     /  May 28, 2011

    “I fly with the stars in the skies,
    I am no longer trying to survive,
    I believe that life is a prize,
    But to live doesn’t mean you’re alive. ”

    “Don’t worry bout me, and who I fire
    I get what I desire, it’s my empire
    And yes I call the shots, I am the umpire
    I sprinkle holy water, upon the vampire (vampire)
    In this very moment I’m king,
    In this very moment I slay Goliath with a sling,
    This very moment I bring
    Put it on everything, that I will retire with the ring,
    And I will retire with the crown, Yes!
    No I’m not lucky I’m blessed, Yes! ”

    Nicki Minaj

    Reply
  15. Megan Rodriguez

     /  May 28, 2011

    Maya, there have been so many things that I have wanted to write to you after so many nights of reading your blog and sobbing…. I have wanted to tell you how I think of Ronan about 50 times a day– every time I look into the eyes of my son who just turned 4 on the 22nd and every time I look at Ronan’s bracelet that I picked up at the water connection and busted out crying when the lady asked me if I know you (I don’t). I am such a better person and mother to my 7 year old and 4 year old because of Ronan, and because of you. I have wanted to tell you how many times my tears of sorrow have turned to tears of laughter reading your blog and seeing the similarities in personality between my Finn and your Ronan. Maybe that is why it is so hard for me to read your words of loss, but I do every day and I want you to know that I am here, standing behind you as so many others are. This morning I felt I HAD to finally write to tell you how I feel about whoever felt the need to make that comment about perfection. FUCK THEM. You are so right in your response. You had perfection, and you will find a new perfection, you are right to see perfection still in your family… even though there is so much pain. You will feel right again, I promise…. after I lost my father to cancer last year I didn’t believe that, I didn’t believe when people told me the hurt would lessen some day… and it took a year for me to feel OK with my new normal. I am not saying that I know what you are feeling, because losing a parent is something we all expect to go through, but losing a child is something that nobody should have to go through. You have come through this Maya, you are here and you are here to share Ronan’s life with the world. You will change the way that the world sees childhood cancer and the eerie silence that has always surrounded it, Ronan’s life is going to rock all of that…. and I am here, as I am sure thousands are… to help you in whatever way you need us. So just say the word. You have an army behind you, don’t let one very misguided person’s words get to you. Thank you for sharing Ronan with us…. and thank you for your candid words, please don’t ever stop speaking your mind. Much love to you Maya.

    Reply
  16. Maureen

     /  May 28, 2011

    Maya- I was so happy to read that you smiled today-even if you did feel as though it was wrong in some way- and believe me- I know exactly how that feels-but something I’ve learned to believe over time is that the loved one who has gone wouldn’t want us to be sad- I”m sure that your Ronan wants you to smile again-but I do know how hard it is to smile when your world has been turned upside down and sideways. But don’t stop-keep trying to smile for your boys and your husband-and perhaps one day it will become easier to do so without the guilt. I don’t know you, but I have to tell you that I think you are the bravest woman in the world. When you wrote how you would rather stay in bed and hide but you don’t because you have your two boys to take care of-right then and there I thought-wow- she is so brave-not everyone could do that-and I am in no way judging those people-everyone has the right to grieve in their own way-there is no right or wrong when it comes to grieving-each person needs to do it in the way that helps them-and in that vein, I am sorry to hear that some people have been questioning and/or judging your description of your perfect life. What is perfect to you may not be what is perfect to another-but who is to judge that? Is there a ‘right’ idea of perfection as opposed to a ‘wrong’ idea…it’s all how you look at it-remember that saying “beauty is in the eye of the beholder”? There is no right or wrong-there is just how you feel and how you look at things-and, if people do not like what you have to say, well, they have the right to just not read your blog anymore. Keep up your fighting spirit Maya- it is what will get you through-stay strong not only for your twins, husband and Ronan-but for yourself. Love from the East Coast…
    Someone shared this with me after my dad passed-and I would like to share it with you:
    “Death leaves a heartache no one can heal, love leaves memories that no one can steal”

    Reply
  17. Emly Innocenti

     /  May 28, 2011

    Everyone has their own idea of what perfection is. It means something different to everyone. But for someone to say that “they hoped you learned a lesson from all of this”, they should be slapped. There are no “lessons” to be learned from what you and your family went through. I don’t think “lesson” is the word we are looking for here. Awareness? Perspective? Unconditional Love? Grace? These are all of the words I think of when I think of Ronan, You, and all of your family. All of these things make me want to be a better person and to appreciate all of the beautiful things and people that surround me. If that’s a “lesson”, then so be it. I just see it more as a new way of living life.

    Reply
  18. Christy Culligan

     /  May 28, 2011

    Just like beauty, perfection is in the eye of the beholder.

    Reply
  19. Melody Fairbanks

     /  May 28, 2011

    Good Morning Maya,

    It angers me that anyone could feel they could judge you or teach you a lesson. You have given us a gift that not one of us will ever be able to repay you. You have made me a better person, reminded me to slow down and enjoy the moments I have with my family. You are wise beyond your years. My heart has been so heavy with sadness for your family and Ronan.
    I sit at my computer every night reading your blog, angry that there are no words or hugs that will mend your broken heart.
    You have always had a very special place in my heart. There is not a day that goes by that I don’t think of Ronan and your family.
    This is your life, maybe if they had to walk in your shoes for one day they might understand?? Fuck them if they don’t get it!! No advice, no judging, no lessons! I am just sending you all the love I have in my heart to you and your family. Love you! Mel

    Reply
  20. Rosemary S.

     /  May 28, 2011

    Dear Maya…it will always amaze me that anyone would ever admonish you for what you write on YOUR blog…geeze people, get a clue and go away.
    As for “perfection”…it is true that it can be of many varying degrees! I babysat my 7 yr old granddaughter and my “almost” 4 yr old grandson last evening. I actually physically stepped back and just adored them for who they were. (I do this unconsciously anyway…but this seemed different). I think it was one of the most enjoyable evenings I have had in a long time…just watching perfection “be”.
    You still have ongoing perfection in your life with your family. You forevermore are a mother to three beautiful kids and you have a loving husband. I celebrate that for you, with you, beside you.
    I am glad that you can get anger out. Stay safe. I care about you. Many care about you.
    My hope is that cancers of all kinds take a flying “F” … as it has taken too much from us.

    The sun comes out,
    it warms our soul.
    Its light surrounds our being.

    The moon comes later,
    cooling our thoughts.
    Guiding our soul with seeing.

    Reply
  21. A Friend

     /  May 28, 2011

    Maya, keep your head up and stay strong. I know ut hurts inside when you see others laugh and moving on like nothing happened. Everyone copes in diff ways. Im sure you feel torn inside when even you are enjoying a small moment. It’s going to be tough, forever. dont listen to the debbie downers! thinking of Ronan and your fam, always!

    Reply
  22. Sascha

     /  May 28, 2011

    Dear Maya, every day I read your blog. Sometimes more than once. I think about you, Ronan and your family often. I truly believe that your story is helping me be a better mom. Every time I am ‘mad’ at my 3 year old girl (because she is throwing things or not listening to me), I think about you and Ronan and I am calm again! Why

    Reply
  23. Sascha

     /  May 28, 2011

    Dear Maya, every day I read your blog. Sometimes more than once. I think about you, Ronan and your family often. I truly believe that your story is helping me to be a better mom. Everytime I get ‘mad’ at my 3 year old girl (because she is throwing things or not listening to me), I think about you and Ronan and I am calm again. Why get mad about such stupid stuff?? Please keep on writing and sharing and fuck everyone who has the nerve to think they know how you feel or judge you!! Rock on!!!

    Reply
  24. Angel

     /  May 28, 2011

    Maya,
    I don’t know you, but I feel like I do. I have followed your story from the beginning. I feel unbelievably blessed that you share your story and pain and love and family with me (a complete stranger). I know how it feels to want to punch everyone around you for what they say and don’t say. And want to run away so fast that the pain in your heart stops. I know how it feels when you have guilt so bad in your body that it eats you up inside. Somedays you feel like you can’t take another breath. I know these things because I lost a very special person to me. I lost my sister, my best friend. My situation is a little different because she died by her own hands. I saw her suffer with mental illness for many years before and many attempts prior. I think no matter what it is that takes your loved one away from you, it is unfair and it hurts so fucking bad. I want to know where my sister is. I want to know if she is ok. It will be 3 years in September she has been gone and I wish I could tell you it gets better. I don’t ever think you get over it. You just get thru it. Somedays are really bad and somedays aren’t. Be patient with yourself and your grief. It’s ok to stay in bed and cry. It’s ok to cuss out people who say stupid shit. It’s ok to feel every ounce of pain you have. I think people just want to help by their words and just don’t know what to say. One of the things I noticed with my sisters death is a lot of the people in my life went away. I don’t know why, but they did. Probably too hard for them to see me in pain.
    Anyway, I know you have the most special love a mother can have with your beautiful son Ronan. He seemed like an amazing little guy. I know you did everything you could to save him. More importantly he knows that. I hope my words find you well. Know that I have felt pain in unmesurable amounts. Amounts I never thought my body could feel. I thought somedays I would just die from the pain. I felt like why. Why her. Why me. Why us. I wish the answers would come easy, but so far I have none. I would like to help with the process of bring light to this horrible black terrible disease that took your Ronan away. I don’t have money, but I have time. So if you can think of something I can do, please let me know. It sounds like you have an amazing network of people around you as well as an amazing family. I know I am only a stranger to you. But I feel you are a part of my life. I know your probably don’t have the energy to read my words much less respond to me. I get that, trust me. I just hope sharing my story helps in some weird way. I don’t know. I think about you a lot and your family. I am sending you peaceful thoughts of love and kindness. Thank you Maya for being brave and sharing your raw pain with the world. I do believe you are going to have a BIG hand in finding a cure for Neuroblastoma. I think you are going to be a voice to all the mothers who lost their children and couldn’t find the words. Thank you!!!

    Reply
  25. Lorna

     /  May 28, 2011

    Maya. I would watch movies where a person would die and I was always amazed when their loved ones would bounce back quickly as though it was a minor thing. Thank you for telling it like it is.

    Your boys don’t think like adults do. Children are naturally more able to bounce back, especially when distracted by fun with cousins in the pool, and when surrounded with the love and strength you give them. Do not feel guilty smiling when you see them happy. Instead… be PROUD! They are healing, however long it takes, thanks to you and Woody. Their happiness helps you feel better – it’s less of a worry if nothing else. Bask in it. To my mind Ronan knows exactly how much you adored him all through his life and especially in his intense battle with you glued to his side. He needs no proof of your love. He would want to watch you all now and giggle at you being goof balls, not feel sad at your sadness.

    You are amazing and you are doing far better than I think I would manage as I am nowhere near as strong. Keep on keeping on!!!

    (Have you someone who can edit the comments here so you can ignore the negative stuff? You will get trolls everywhere, even somewhere like here and one good way to be unaffected by their negativity is not to see it in the first place.)

    Lots of positive thoughts from me!

    Reply
  26. Erin Riek

     /  May 28, 2011

    First off, I’m so very glad that the ocean did not swallow you whole, or a shark for that matter. The world needs people like you in it.
    Second, perfection is what each person believes it to be I’d feel more sorry than anything else for the person who wrote in and said it doesn’t exist. Either they really have never had or felt it or they are to blind and perhaps materialistic to realize they actually do have perfection in their lives they are just looking in the wrong places. Either way it’s just silly for someone to try and examine another person’s life and decide.
    I’m not sure if you delete the posts of some of these idiot remarks you get or if you leave them posted, you receive a gazillion of them and I don’t have the attention span to read them all but it would be pleasurable for me to see how many humiliating remarks they’d get back from the majority of us who disagree, but I’m cruel like that.
    Anywho, the beach with family and loved ones sounds like the perfect place to find comfort and solace.
    I hope you can find some of that.

    Reply
  27. Hisham

     /  May 28, 2011

    Maya –
    After reading the negative comment that someone left and your response to it, I posted a message last night that did not survive the moderation screening. And so I wanted to apologize for losing my composure. I’m sorry – that comment just got me fired up due to its blunt insensitivity to you and your family. But I will not make the same mistake again and contribute to more negativity here. As a reader of your blog, I will do what I can to ensure that everything you might read here is focused on healing for you. So I will finish by writing that I am happy that you are taking time to focus on healing with your family. In each blog post that you write, your strength and love for them shines through as clearly as the sun. So keep going and know that we (your readers) are behind you.

    Reply
  28. TC

     /  May 28, 2011

    Maya,
    There is no need to have to comment on ignorance…. there is NO ONE..that knows what your heart is going thru..you achieved perfection and continue to realize perfection even now. The perfection now is a little different….but a perfect day at the end, is you are still breathing and fighting for the beautiful PERFECT little boy who touched many, many lifes, some will be jealous…you go girl, we are all here fighting with you to find a cure for this dreadful disease….you are amazing, and you are doing an amazing job…..love,toni

    Reply
  29. Mandy

     /  May 28, 2011

    If there was ever a time when saying “fuck” was appropriate you have it. Thank you for sharing your story. There are many moms that are better parents because of your blog. Including me. Sending love and prayers.

    Reply
  30. Trish

     /  May 28, 2011

    Maya, I’m glad you and your family are taking time together to heal. Wish it was easier. Your a wonderful mother and you will lead them down the path of recovery. It sounds like you are doing well taking care of yourself too, time, patience, day by day. I love that you write to Ronan. Thank you for sharing. I am truly sorry that anyone would utter any unpleasant words your way, especially during this time in your life. Ignore ignore ignore, not even worth your time!

    Reply
  31. Krystal

     /  May 28, 2011

    Maya, you are an amazing, strong, wonderful woman, mother, friend, and wife! I think your definition of perfection is right on! Who is that person to tell you what lesson you should of learned?! I think through this entire time with Ro you’ve defined perfection and I think we as people get to chose what we think perfection is! I know everyday Ro is surrounding Liam, Quinn, Woody and you! He knows how much you love, miss, and care for him! Ro is the brightest star in the sky and for thr last few weeks when I see the stars I smile and think about Ro and how many lives he has changed in such a small amount of time!! What an amazing purpose Ro had….to help others think so un-selfishly, to cherish life, to live each minute for what it is, a blessing!! Thank you beautiful Maya Thompson for sharing this all with us!! I love you and your family even though I may not personally know you! Smile beautiful Maya and feel the love and strength around you!

    Reply
  32. Glenda

     /  May 28, 2011

    Maya, I saw that comment too… and I thought… really? Is that necessary? But just know there are some people out there that have to be so cruel and so negative.

    I’m so glad that you and the boys are doing everything positive and for Ronan.

    Everyone has their idea of the perfect life…the perfect family. I call it “our circle” it is what it is and we are all happy from where we came from to what we’ve accomplished in life, and we are complete. We have each other’s back and will support each other to the end. So I agree with you! YOU had the perfect life for you, Woody, Liam, Quinn and Rockstar Ronan!

    Mama Bear…Baby steps forward…one step in front of the other… strength… peace…love… hugs… every second of evey day… to the moon and back! xo

    Reply
  33. I think that he sees you every day. Every single time you think of him. I think he sees us all, every time we think of him. I know it seems impossible to us here, but I think that now, there is nothing that Ronan can’t do. And I think that every time we think of him, and he sees us, that he sends us down more love that we can imagine. Love we can feel ourselves and love that we can give freely to other people. Any people. Family, friends, the stranger we pass on the street, the one everyone else calls unlovable, and even the enemy who hates us. I think Ronan does this for us. Because every time I think of him, I can feel it. The overwhelming love he’s sending. And then I feel compelled to pass the Ronan love around to anyone and everyone. I feel so blessed to have been matched up with your beautiful baby when I signed up on the Cole Prayer team website. I love that his bright little spirit can be with so many people, all across the nation, to make the world a better place.
    Believing..

    Reply
  34. Nichole

     /  May 28, 2011

    I saw the most beautiful tattoo today and could not stop thinking of you & Ro. It read “To the Moon & Back”. I think about you all daily; when I see anything Paul Frank, when I see a little boy wearing an adorable golf hat, when I see an ASU logo, and anytime I see a child with those gorgeous crystal blue eyes. Thank you for sharing your beautiful baby with me so I can get the daily reminders of how precious our time on this earth really is. From one mommy to another..I think you are one of the most couragous, loving mommy’s in the world. My hope for you is that each day gets a little bit more manageable, not easier..but manageable. Keep surrounding yourself with the most beautiful of souls and remember even if you don’t always see Ronan, he is always with you, guiding you, smiling with you, and loving you…Too the moon and back…Lots of Love,
    Nichole

    Reply
  35. Alana

     /  May 28, 2011

    I saw that comment too Maya and it was not only mean spirited and cruel, but totally wrong! I wanted to resond to him but decided he really didn’t deserve a response. I know it’s hard to not let it bother you but just focus on all the love and support from everyone else. You have SO many following your blog, most of us have never met you… and yet you have found a way into our hearts with your words. We have smiled with you, laughed with you, and cried with and for you. It would be easier in many ways to quit reading your blogs and go on with our lives and just forget the sadness….but I don’t think any of us can or wants to do that. So many like myself think of you thoughout the day and grieve for a little boy we never met and for a mother who’s heart is broken. And you know what? THAT to me, is what perfection is….to love and care so deeply that you are willing to “walk though the fire” with someone even when you don’t have to.

    Reply
  36. Barbara

     /  May 29, 2011

    You have a wonderful gift for writing and expressing yourself…have you thought about writing a book? You and your sweet boy have touched more lives than you will ever know. Thank you for sharing yourself with so many.

    Reply
    • Elizabeth Z

       /  May 30, 2011

      Yes, I totally agree.

      Reply
    • Mandy

       /  May 31, 2011

      Agreed. These blogs could all be compiled into a book. I recently started reading them. Maya connects with many.

      Reply
  37. Elizabeth Z

     /  May 30, 2011

    Maya, don’t pay attention to this people, we all love you. XOXO

    Reply
  38. Maya, I came across your blog through a friend on Facebook about a month ago and now I visit here daily. When quite a few days passed without a post from you, I worried how you were doing and wished that I could reach out to you and your family to help in some way. The strange thing is, I have run into about 10 people in the last few weeks and Rockstar Ronan always seems to come up! It is amazing how Ronan is reaching so many people that you don’t even know. My sister, who was my best friend in the whole world passed away from cancer, so I know how hard it is when people give you advice or say things that just piss you off. I remember thinking, if one more person tells me she is in a better place now, I am going to scream. She liked this place just fine thank you! I think people just don’t know what to say so they try to find something profound or comforting. When you know someone is hurting so deeply, all you want to do is make the hurting go away. I have not seen the post from this person, but I am wondering if they were trying to disseminate some ill worded wisdom…at least I am hoping so. But in the meantime it’s ok to tell them their words did not help to heal. Your family is in my thoughts and prayers each and every day and I thank you for bearing your soul and your tears so that we can send you love and light in hopes that even in some small way it makes your burden lighter for a moment.

    Reply
  39. Tiff

     /  June 6, 2011

    Maya,

    Forgive me for being a little late on this post, but I don’t visit here often– maybe only a couple times a month. It isn’t because I don’t care, or think of you all, but because it is just so emotionally draining to even try to fathom what you all are going through. I lost my Grandma to cancer as I mentioned to you before and she was the most important “grown-up” figure in my whole world, but to lose a child is something I can’t even compare to that. I can’t even begin to imagine it, nor do I want to. My heart breaks for you and just the tiny bit of your pain that I can feel through your blogs almost makes it hard to breathe because as a mother, I can’t wrap my head around your heartache. I just can’t.

    Anyway, the point of my comment was to tell you that whomever told you that you should have learned that no family is perfect is a fucking MORON! Who can decide what is perfect to YOU and to YOUR family? No one other than you and your family! My family is perfect to me. Are we rich? Nope. Do we live in this amazing mansion? Nah, a modest 3 bedroom/2 bath. Do we drive expensive cars? A Kia Rondo and a Pontiac G6 so no again. But you know what? We have enough money to do what we want, within reason of course, when we want. We own our own home. We have two reliable, safe cars to drive our children around in. We have two healthy, happy kids, and we have good jobs that provide us with the means for OUR perfect lifestyle. So while it may not be “perfect” to some, it is quite perfect to me.

    No one in this whole damn world can decide your version of perfection for you so screw the assholes who try to make you feel icky for your thoughts on the matter. Your life is yours, not theirs, and this is your blog. Anyone who doesn’t like it can kindly stop reading it. Perhaps they should keep that in mind in the future when they feel froggy and go ahead and jump right on out of the pond. ;)

    Reply
  40. Marjorie

     /  June 13, 2012

    I’m am just now (6/2012) getting to know Ronan and your family. It has been and honor to get to know you and your family. You have given so much, when so much has been taken. I have never wanted to utter these words, but now understand it is okay to say because it is true, you have taught me that. My life is perfect, with all it’s imperfections. I have never taken that for granted, but now have an even deeper appreciation. Thank you. A loving and wonderful Husband a beautiful 4 year old girl, a crazy talented 6 year old boy, but that’s not the perfect part. We love each other so much, we are together, we are healthy and happy. That is all that is needed. Even with all my blessings, I wish you had not given me the courage to write down those words. That would mean I did not know of you and your family because your Ronan would be right where he belongs, with you and his loving family. I would have been happy never to have had the courage to write it down so that you too would not have had to write all you have shared with us. It is impossible not to be effected by your love, your grief, your life.

    Reply
  41. SCREW CANCER , RIGHT IN THE FACE!

    Reply
  42. Mary BUkovskis

     /  September 11, 2012

    Hi Maya – I hope you see this. I’m sure you are overwhelmed by all the new names/faces writing to you. I haven’t gotten a fucking thing done today. I heard the perfect song by Taylor. Googled you and have been reading your blog. Ugly Crying. I have a beautiful, healthy son who turned 6 ten days ago and a stunningly beautiful 17 year old daughter. I am selfish. I am incredibly selfish but I have never prayed harder than I have to day that I never have to experience the anguish which you have. Yes – Mommys feel our children more. I just had got this great sign I saw on Pinterest and found this woman to recreate it for me (Etsy rules). It says “Of course I love you the most as you are the only ones who know what my heart beat sounds like on the inside.” You are an inspiration. Ro is perfect. You are perfect. Thank yo

    Reply
  43. I live in Tempe,Arizona and I just cannot live another day the same way after reading this blog. I watched all the videos with all the beautiful pictures of your family. Most of the places where these pictures were taken look familiar to me as we live in the same city. It just makes me second guess every time I have passed a family smiling for a picture. What is that family going through? I could have been right next to Ronan eating my frozen yogurt and I would of never known about his story. I would of just thought he was a normal boy eating frozen yogurt, but he was so not. He is an amazing little boy. I have been obsessed with Taylor Swift since I was 14 and I was blessed enough to go to her concert for my 21st birthday in October. While I was celebrating my birthday, You were talking to Taylor about how to bring attention to childhood cancer. I remember showing up at 10 am the morning of her concert and waiting outside the venue with a bunch of 10 year olds and my boyfriend (yeah, hes great) , hoping she would come sign autographs and when her car pulled up I saw her walk into the arena and we screamed for Taylor and she just kept walking. I was so disappointed and shocked. I kept saying, I thought she was really nice and would of stopped? I feel so dumb in retrospect. Of course she didn’t stop… she had so many other things on her mind that I had no clue about. Things like Ronan. I will forever check in on this blog from time to time as my heart has been touched and I will always wonder how you and your family is doing. Thank you for sharing this story.

    Reply
  44. Minela

     /  September 17, 2012

    I found out about your beautiful boy Ronan today when a friend of mine told me to listen to Taylor Swifts new song. I was so touched & intrigued, I had to get on your website and read your blogs. After reading the first sentence I couldn’t stop crying but at the same time I couldn’t stop reading. It saddens me to hear that someone had the audosity to leave you such a hateful and rude comment. I’m glad that through your anger, saddness, and grief you were able to smile, shows how strong of a woman you are. I would also like to thank you for sharing your story, and all of your memories with Ronan, you have touched everyone’s lives, especially mine. I know a part of you will always feel sad, but I wish nothing but the best in the future for you and your family and I hope that through your saddness you will find the courage to be happy again, for yourself, and for Ronan. Continue to share your story, I really enjoy reading your blogs and may Ronan rest in peace. Take care, and stay strong.

    Reply
  45. Bianca

     /  September 22, 2012

    I think that Ronan watches everthing that you do and that he misses you may Ronan rest in peace and that you contiue to share your story there is not one that I read when I don’t have tears running down my face because he died. my moms cousin is fighting cancer at the moment and lots of the people in my family have had it I will proberbly have it but I hope that I don’t but for a kid to die at such a young at I agree with you FUCK CANCER is is so stupid and Taylor Swift is so nice for writing a song it never hit me after reading some of these blogs how sad it is I seem to cry at night hoping that he will come back to life and that he deserves at second chance at life but it will never happen it is so sad and I hope that you Take Care and Stay strong.
    Bianca

    Reply
  46. This might sound weird but I said out loud if your with your mommy Ronan than make it rain and two minutes later a nice soft rain started right then I new he was with his mommy <3

    Reply
  47. Destry Comp

     /  November 1, 2012

    Hi i am 13 and a few moths ago i lost my friend Maddy Boutelle to a brain aneurism. It was very tough. Her favorite song was Everywhere I Go by Lissie. It really made me feel connected to her when i heard that song. Listen to it. It might help. I love your blog and feel as though i knew ronan when i read it. I hope all is when for you and your family ∞

    Reply

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  • Instagram is my BFF

    #Repost from @jentate with @repostapp
Oldies but goodies. Seeing these shirts on my RoLovies makes me sooooo happy. @palmercash #ronan #fucancer #rockstarronan #palmercash 💜 came home to thissss!!!! @palmercash #awesome #ronan #rolove now my hubs can rock the #rolove !!! This is the "I want to fucking kill myself selfie." Camelback Inferno hike today is extra hot. WTF was I thinking? Oh, I know. My son died from fucking cancer so I get to live my life being insane and doing crazy shit like this because sometimes it's the only thing that makes me feel alive. Thanks, cancer. You are an asshole. #ronan #fucancer #camelbackmountain #infernohiking #iwanttofuckingkillmyselfselfie #thatwasajoke #nobodyneedstofreakout Battle of the Blogs ends at 11:59PM MST TONIGHT! Those last few hours are invaluable, so please continue to vote as often as you can. 💜

Thank you for your love, your support, your kindness, and your belief in Maya & Ronan, and how they're changing the world. Link is on FB & Twitter!
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