Fancy and Karma can go get FUCKED


Ronan. The holidays are over. I’m still standing. I’m may be shaking, but I’m still standing. The room is still spinning, but I’m still standing. I wonder how long until I fall. Hard. I wonder if I’ll be able to get back up. Some days I think yes. Other days, I think no. Today, I thought no. Today, I am just trying to breathe. I did a lot of things today. I went to breakfast with your daddy and brothers. We played football, basketball, and went on a bike ride. I’m exhausted from the normalcy of today. My hands have shaken for 2 days now. Your daddy asked me if I was mad at him. I told him I was not. I was mad at the world. I am. I used to believe in karma, Ronan. You know you always hear, you get back what you put out there. Fuck that. I believed in karma, until it kicked me in the face. Now I’m not sure what I believe in, besides you. Without having you to believe in, I would not be here. That is a FACT.

I spent most of the day, hiding my tears from your daddy and brothers. Your daddy asked me what we had planned for next weekend. I wanted to punch him in the face. I don’t understand how he can possibly ask me such a question. Does he not see that I can hardly get through the day, let alone think about next week? I wanted to scream at him that I was not doing anything, until he brought you home. I didn’t. It took everything I had, not to. I just don’t understand, why you can’t come home. Or why you had to leave home in the first place. I still wonder when you are coming back. I walked around most of the day screaming back at the voices inside of my head and staring at your Urn. We had friends over for dinner except I forget to cook for them. I’ll let them say it was a miscommunication but it was not. The old Maya would have never done such a thing. The old Maya would have given Martha Stewart a run for her money. Tonight, I tried to keep myself composed but I was so shaky it was all I could do not curl up into a ball and hide in the corner. I told Mandy Bee this while we sat on the floor of our laundry room and folded socks. Ahhhh, yes! Come for dinner where I totally space everything but you can sit on my floor and help me fold the piles of laundry that won’t fucking go away! What the hell? Whose world am I living in because it can’t certainly be mine! My old world, the one where you were here, where you are supposed to be, the laundry didn’t stand a chance! I always had that beast under control. Now, it is eating me alive. How are the simplest things, so challenging? Oh wait, I know. It’s because I no longer have your clothes to wash, your stains to remove, your socks to fold, your sheets to clean, your bed, to make. I still carry your socks in my purse though. The one’s that I put on your little feet before you died. The ones that kept your little frozen toes, warm. I carry your little socks with me all the time. I told you I was a good mom. I’m still an awesome mom, to you even though you are dead. TOTAL AWESOMENESS, RO!!!!!!!!!!!!!!!!! fucking bullshit, ro.

Mia’s mom called me tonight. I normally don’t answer the phone anymore, but I was sitting on my bed with Mandy Bee and she called. I didn’t hesitate, picking up as we don’t get to talk often. She was crying. She told me she had just read my last post. I told her I wish she wouldn’t have. I don’t remember what I wrote, but she told me she was really worried about me. I didn’t argue. I told her I was too. Because I am. I listened to her and the way her voice quivered, I listened to her as she begged for someone to help me. I listened to her, as she asked if there was anything that was going to make this easier. I told her no, I didn’t think so. I told her I think I am just expected to live with this pain for the rest of my life. I told her, I didn’t think I was strong enough. I told her that I still can’t believe that I was staring at your ashes on top of my dresser. I told her that nothing is getting easier. I told her a lot of things, I wish I didn’t have too. I wish I wouldn’t have had to listen to her as she cried about Mia, how she may never walk again, but oh wait! The cancer is gone, so they have won! Everything is ponies and rainbows and sparkles galore! Bullshit. Sandra knows this is bullshit too. I know she wouldn’t trade places with me in a heartbeat. I know she was not being insensitive to losing you, Ronan. And all they have been though, is fucking awful and it’s not even close to being over. Mia had her childhood robbed from her but she is still here fighting, even though cancer is trying so hard to take anything she has left. So, going back to the fucking karma thing? This is fucking karma? A little girl like Mia, who was perfectly healthy, deserves to have her entire body destroyed because it was trying to fight the cancer that was trying to kill her? She didn’t do anything, to deserve this! And where does that leave you? Karma for you? You deserved to die because what goes around, comes around? Fuck that. I wish people would actually think of other situations, besides THEMSELVES, when speaking. Mia does not deserve this. You did not deserve this. Charlotte did not deserve this. Haley did not deserve this. Esther did not deserve this. None of these kids, deserve this! I don’t know who the fuck is in charge but if I ever find out, it is not going to be pretty. I may not know who is in charge, but I am here to scream and cry and yell until someone fixes it. The world owes all the parents, and children out there, who are dealing with this, better outcomes and answers. They owe us, because too many kids are suffering and DYING from the NUMBER 1 DISEASE KILLER IN CHILDREN!!!!!!!!!!!!!!!!!!!!! HELLO ASSHOLES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What do we have to do to get people to start acknowledge this?????? We have billboards, TV, Movies, Books, Magazine Ads, but NOBODY is willing to take this on? St. Jude’s is not enough to get the word out. It’s not acceptable that when people think of childhood cancer, they think of only St. Judes. It’s a start, but bigger things have to start happening or our kids don’t stand a chance. Ronan did not stand a chance and he should have. He MATTERED. He should still be here but because of the lack of awareness and funding, he is sitting in an URN on the top of my fucking dresser where I get to kiss him goodnight now. So karma, can kiss my fucking ass. This has nothing to do with karma. It has to do with bad luck and a society that would rather look the other way and watch the fucking Kardashians on T.V because that is what matters in this world? Because childhood cancer is too sad and it doesn’t happen to kids. Well FUCK YOU. You know nothing about sad asshole society. Unless you too, have had to bury your child. Unless you too, are now expected to live in a world that is UNFUCKINGLIVABLE. If you know what this is like, then do something about it. If you don’t know what it’s like, do something about it, so that if the awful time ever comes, that you do… and I pray to Ro that it doesn’t,….. you will know that you helped make a difference. Stop standing around like a bunch of ignorant fuckwads! Stop being scared! Be the change you want to see in the world. Stop being so selfish and wasting time on things that do not matter when you could be doing something like helping to save a child’s life by making people aware of how ugly childhood cancer is. How it deserves to be recognized. How people need to stop doing things just to have their fancy name on a fancy door at a fancy hospital to go to a fancy ball so they can dress up in a fancy dress. Clinical trials need funding. Research needs funding. This is the only way the results for childhood cancer are going to change. You can build all the fancy hospitals you want but if the right answers are not there, I hope you felt really good about eating in the new cafeteria while the Friday Night Candy Cart came by all while your child was really dying. I hope that free meal, was worth it. I would have rather sat my ass in a ghetto of Mexico with Ronan if I knew the treatment there, would have been the best chance he had. Not because I cared about what the hospital looked like. I’ll bet you half of the people who are donating, do not even know where their money really goes. Do they ask? Probably not. Is it going to save a kids life? I doubt it. But it makes them feel good because they get to put on the fancy dress and Louboutin shoes and have their picture in a fancy magazine so they can show all their fancy friends and feel good about themselves. Unless you are on the floor of a hospital, wearing your Louboutins, getting down and dirty, holding the babies who need to be held because their parents work 3 jobs so they can’t be there……..Fancy can get FUCKED.

I know I still have not been clear on where this money is going to go towards. As of now, it’s piling up. I am going to NYC Janury 22-30th to meet with a couple of people who I hope can steer me in the right direction. I have to cover all of my bases. I am meeting with Dr. Mosse at CHOP in Philly to look at the clinical trials she is working on. I believe in her and I know she is doing everything she can, to make a huge difference in Neuroblastoma. This money, will NOT be used so Ronan’s name can go on some fancy door. This money will be used to help with research of clinical trials that will hopefully let some children at least celebrate another birthday. I know the doctors are no where close to having a cure for this disease, but FUCK. What I wouldn’t have given, to have had Ronan around to celebrate another birthday. What I wouldn’t have given for some more time, with my baby boy. Anything I had. Everything I had. My hands, arms, legs, eyes, whatever it would have taken. I sold my soul a long time ago to somebody. He can keep that. I don’t want it back. I’m in the process, of finding a new one because the soul that once was me; is DEAD.

Ro baby. I don’t know what else to say. Except I am sorry every second of life. I do not think you are WILD and FREE up in heaven with GOD. Enough with that people. Or keep it to yourself. I don’t want to hear it. I am not on this one all mighty GOD bandwagon. And if he is hanging with God, then GOD is an asshole because he should be here with ME. His FUCKING MOTHER. The only one who was ever supposed to take care of him. Can’t we just leave it at Ronan is wild and free? That gives me a tiny bit of peace. Not much but it’s better then nothing. Ronan was too much of a rebel to be hanging with this “God” dude. He is wild and free all by himself. But I’m sure he’s got a great wolf pack in tow, following right behind him. I love you, Ronie baby. I miss you. I hope you are safe. Please make me a little less sad tomorrow. I don’t know if I will make it if things continue on this way. Why can’t anyone save me? You know why, Maya. Because you never let them. You’ve always saved yourself. The cycle…continues. It’s been this way since you were 9 years old. I doubt things will ever change. The only person that can save you; is you. I know this. I just wish someone could swoop in for a bit so I could take a break. But no breaks here. This mission is too big, but not impossible. You were mine, you changed my entire life, I am here to carry this out for you, baby doll. Just like we talked about. G’nite my sweetest boy. I love you. Sweet dreams.

Throwing this in here for you all tonight. I talk about living a fearless life a lot now. Because I do. I don’t fear much of anything…. unless you count Rats, Mama Kristi…. that was for your Raine. xoxo

So read this. Think about this. Tonight, when I was needing some inspiration, I found this thanks to Dr. JoRo. I felt hopeful once again. I felt like I can do this. I can change this. I’m not afraid. I’m a rebel at heart. Ronan’s Rebel Forever baby. Breaking the rules, all the time.

by Jiddu Krishnamurti

“I WONDER IF WE HAVE EVER ASKED ourselves what education means. Why do we go to school, why do we learn various subjects, why do we pass examinations and compete with each other for better grades? What does this so-called education mean, and what is it all about? This is really a very important question, not only for the students, but also for the parents, for the teachers , and for everyone who loves this earth. Why do we go through the struggle to be educated? Is it merely in order to pass some examinations and get a job? Or is it the function of education to prepare us while we are young to understand the whole process of life? Having a job and earning one’s livelihood is necessary- but is that all? Are we being educated only for that? Surely, life is not merely a job, an occupation, life is something extraordinarily wise and profound, it is a great mystery, a vast realm in which we function as human beings. If we merely prepare ourselves to earn a livelihood, we shall miss the whole point of life; and to understand life is much more important than merely to prepare for examinations and become very proficient in mathematics, physics, or what you will.

So, whether we are teachers or students, is it not important to ask ourselves why we are educating or being educated? And what does life mean? Is not life an extraordinary thing? The birds, the flowers, the flourishing trees, the heavens, the stars, the rivers and the fish therein- all this is life. Life is the poor and the rich; life is meditation; life is what we call religion, and it is also the subtle, hidden things of the mind- the envies, the ambitions, the passions, the fears, fulfillments and anxieties. All this and much more is life. But we generally prepare ourselves to understand only one s mall corner of it. We pass certain examinations, find a job, get married, have children, and then become more and more like machines. We remain fearful, anxious, frightened of life. So, is it the function of education to help us understand the whole process of life, or is it merely to prepare us for a vocation, for the best job we can get?

What is going to happen to all of us when we grow to be men and women? Have you ever asked yourselves what you are going to do when you grow up? In all likelihood you will get married, and before you know where you are you will be mothers and fathers; and you will then be tied to a job, or to the kitchen, in which you will gradually wither away. Is that all that your life is going to be? Have you ever asked yourselves this question? Should you not ask it? If your family is wealthy you may have a fairly good position already assured, your father may give you a comfortable job, or you may get richly married; but there are also you will decay, deteriorate. Do you see?

Surely, education has no meaning unless it helps you to understand the vast expanse of life with all its subtleties, with its extraordinary beauty, its sorrows and joys. You may earn degrees, you may have a series of letters after your name and land a very good job; but then what? What is the point of it all if in the process your mind becomes dull, weary, stupid? So, while you are young, must you not seek to find out what life is all about? And is it not the true function of education to cultivate in you the intelligence which will try to find the answer to all these problems? Do you know what intelligence is? It is the capacity, surely, to think freely, without fear, without a formula, so that you begin to discover for yourself what is real, what is true; but if you are frightened you will never be intelligent. Any for of ambition, spiritual or mundane, breeds anxiety, fear,; therefor ambition does not help to bring about a mind that is clear, simple, direct, and hence intelligent.

You know, it is really very important while you are young to live in an environment in which there is no fear. Most of us, as we grow older, become frightened; we are afraid of living, afraid of losing a job, afraid of tradition, afraid of what the neighbors, or what the wife or husband would say, afraid of death. Most of us have fear in one form or another; and where there is fear there is no intelligence. And is it not possible for all of us, while we are young, to be in an environment where there is no fear, but rather an atmosphere of freedom- freedom, not just to do what we like, but to understand the whole process of living? Life is really very beautiful, it is not this ugly thing that we have made of it; and you can appreciate its richness, its depth, its extraordinary loveliness only when you revolt against everything- against organized religion, against tradition, against the present rotten society, so that you as a human being find out for yourself what is true. Not to imitate but to discover- that is education, is it not? It is very easy to conform to what your society or your parents and teachers tell you. That is a safe and easy way of existing; but that is not living, because in it there is fear, decay, death. To live is to find out for yourself what is true, and you can do this only when there is freedom, when there is continuous revolution inwardly, within yourself.

But you are not encouraged to do this; no one tells you to question, to find out for yourself…, because if you were to rebel you would become a danger to all that is false. Your parents and society want you to life safely, and you also want to life safely. Living safely generally means living in the imitation and therefore in fear. Surely, the function of education is to help each one of us to live freely without fear, is it not? And to create an atmosphere in which there is no fear requires a great deal of thinking on your part as well as on the part of the teacher, the educator.

Do you know what this means – what an extraordinary thing it would be to create an atmosphere in which there is no fear? And we must create it, because we see that the world is caught up in endless wars; it is guided by politicians who are always seeking power; it is a world of lawyers, policemen and soldiers, of ambitious men and women all wanting position and all fighting each other to get it. Then there are the so-called saints, the religious gurus with their followers; they also want power, position, here or in the next life. It is a mad world, completely confused, in which the communist is fighting the capitalist, the socialist is resisting both, and everybody is against somebody, struggling to arrive as a safe place, a position of power of comfort. The world is torn by conflicting beliefs, by caste and class distinctions, by separative nationalities, by every form of stupidity and cruelty- and this is the world you are being educated to fit into. You are encouraged to fit into the framework of this disastrous society… and you also want to fit in.

Now, is it the function of education merely to help you to conform to the pattern of this rotten social order, or is it to give you freedom- complete freedom to grow and create a different society, a new world? We want to have this freedom, not in the future, but now, otherwise we may all be destroyed. We must create immediately an atmosphere of freedom so that you can live and find out for yourselves what is true, so that you become intelligent, so that you are able to face the world and understand it, not just conform to it, so that inwardly, deeply, psychologically you are in constant revolt; because it is only those who are in constant revolt that discover what is true, not the man who conforms, who follows some tradition

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20 thoughts on “Fancy and Karma can go get FUCKED

  1. Ali Barnes

    Fuck…I’m so sorry Maya. This is such complete and utter bullshit. I wish I could swoop in and save you and I know I’m not the only one. I would sit on the floor with you, folding your washing and crying right there with you (I cry with you anyway, just from afar). I don’t know you, you don’t know me…but that doesn’t stop me wishing I could do more to help you. I post about you all the time, I have Ro’s photo in my signature on an online community I’m a part of…but it doesn’t seem like anyone is paying attention. I think it’s easier for people to just ignore it and hope it goes away (for all I know, nobody follows my FB feed anymore!) It makes me sick to my stomach. I don’t know what else to say…but I will fight for Ro and all the other babies for the rest of my life. You are not alone, Maya…though we may not know what you’re going through, we are all still here – fighting for you and fighting for Ro.

  2. moon

    Maya,
    I have been thinking of you often and wishing you were busy with family and not with Fuckwad Bob. I am so sorry. I miss him too and I didnt even get to meet him. I believe in you. I believe in Ro. We got this RoMama. Cancer doesn’t stand a chance!! I wish you some peace. Love you <3333333

  3. moon

    I love you Maya like a sister. Your sadness is so sad and yet so beautiful at the same time. The beauty comes from the deep love that you and Ronan share, because it makes sense that you would hurt so fierce when you lost a love so DEEP. I am so sorry that you had to let Ro’s body go but he IS wild and free. He is with YOU. He is always with you. His BODY is not where it should be but his SOUL is. I wish you peace mama.

  4. Julie

    I have an idea! I know every little bit helps, and I gave my little bit; but its not enough. I just read an article on Jennifer Buffet–Warren Buffet’s daughter in law. W.B gave her and her husband a billion dollars with one rule, they had to donate it. W.B. and his group of billionaires have made a deal to donate all of their money when they die. The Ronan Thompson Foundation needs to be on that list. I’m happy to help think of ways to get on that list; I wish I knew these people personally but I don’t. Its a goal though…and I know Ronan will help you reach it! Email me if you want some help brainstorming!

  5. kelli

    Maya,
    I am sorry. I have no Idea how you must feel and the pain you have to live with. I really hope you have days where you feel wild and free. You, desreve to feel happiness again. I only have gotten to know you and Ro through your blog. Ro is such a awesome lil guy. He will forever live on, Please know that he will not be forgotten. HIs soul and spirit has touched so many. I now find my kids doing little “naughty” things and I Laugh now, because of Ro. I think of your family daily. I hope you have some better days soon, -FUCK OFF FUCKWAD BOB-

    With Love,
    From TX

  6. Glenda

    Maya,

    Here… thinking of you and Rockstar Ro! Always Ro… My heart aches for you… I pray that peace and strength will be part of your day today… baby steps…

    FU Cancer!!!!!!

    xoxo

  7. kelsey

    your mind Maya….your mind is so strong….please stop letting it so painfully consume you…I love you. You know that, because I know you can feel it….I know you can feel the love and support from this community you have created…..you hear that?? a community that you created….I know you may not be proud of this, nor was it ever something you dreamed of creating…but you have drawn this amazing crowd of people to you….a group of people that care so deeply about you that we cry with you, and hurt with you…I think about you daily….you sometimes consume my thoughts….my husband may possibly even be jealous of the time I spend thinking about you, hoping you are OK, wondering what I could do to help you…I’ve considered driving to Phoenix and finding you….treating you like one of my best friends….I know I can make my friends laugh, if even for a minute….so I want to make you laugh, if even for a minute….I know how powerful the mind is….I would love to give you some advice….but we are not friends…who am I to tell you what I think??? but I care about you and this painful journey you are on….I don’t think you should change a thing…but I know that your mind can help you, just as it is allowing you to spiral down this road of pain…remember, you are in control of your thoughts….during every second of every day…you know how to find me….love, love, one perfect love…..

  8. Melissa

    Maya,

    I’ve been reading your posts for awhile now, but have not yet had the courage to post. I know that I’m supposed to say “I’m sorry” or something like that – but the words that come are actually “thank you”. Thank you for sharing your pain. Thank you for making it real to someone like me who can’t possibly imagine the life you are living. I know it can’t be easy, but I can’t imagine how hard it really is.

    For me, understanding your fight seems especially important. You see, I am a small cog in the great machine of cancer research. I am a statistician (i.e. it’s my job to analyze data and plan the technical details of experiments) for a small research group. We haven’t looked at neuroblastoma yet, but it’s actually in the works (although no clinical trials – sorry.)

    You may not care (and that’s okay), but I want to tell you something about research in my field. You interact with doctors and research assistants and many other people to help provide data to cure cancer. These people know you, your story, your family. By the time I get involved, all that personal information is gone. Your medical information is protected (and don’t get me wrong, I have no problem with that – as a researcher, parent, and potential patient as well). But there is a cost. It’s hard to take the data I’m given (e.g. age, gender, race, diagnosis) and appreciate the story – the struggles, the hopes, the fight. Ronan’s story is one of several I follow. Your writing gives me a face to put on many others whose names i will not (and legally cannot) know. It helps me to make it personal, when everything I see is impersonal.

    Thank you. Thank you for helping me to see what fighting cancer really entails. Thank you for helping me to make it personal. I wish I could fix everything for you – cure the disease, bring back Ronan. Realistically, even our research is only a small step which might (hopefully) help to improve our knowledge. I truly hope it helps give someone somewhere the tools to find the cure.

    I hope you can someday find peace in your life, and I wish you the best. Good luck.

  9. LE

    Interesting article sent from Dr Jo.
    Maya you do need asssistance in clearing your mind. I am glad you are going to NY, that is a positive forward motion. I hope you are not going alone. Support is always a good thing. Sometimes I think you are dragging yourself down with the posts. Always negative with a peek of positive. The more you dwell on the negative the more it is embeded. A short term of the CORRECT type and CORRECT dosage of anti-depressant medication will give you time to get the downward spiral under control. You are in a rage inside. I wish you would hear Woody’s concern and feel the goodness in his attempts to bring normalcy to your lives instead of being pissed off at him or wanting to lash out and hurt everyone that is not in your pain. As long as you are “alone” in your mind everyone else suffers too. That is what you want- everyone else to be as sad and mad and depressed as you are.
    When you can’t control a piece of your life, control what part of it you can. There-in comes karma and peace. Positive things come, karama comes. You can do so much more to forward the research for neuroblastoma, but it will take all of “Maya” to do it.
    Think of Quinn & Liam & Woody, they don’t deserve the Maya and Momma they have now any more than you deserved to lose Ro. Live in the present with the loves of your life. Work together to save someone else’s child from neuroblastoma. Ronan will live on thru them. Not the way you wanted life to be, but knowing you helped save another Ronan out there will be a glimpse of peace for your heart.

  10. steph

    Maya..
    I wonder why I read this? I have 2 kids..(your twins age)…and its like taking a beating EVERY time! I can tell you this as fact. If I were to lose my life and heart which are my children…or one of them…I would be like you…half dead…crying crying..wondering when I will go insane…Take all the time you need….meanwhile know lurkers such as myself….are trying to share your pain and take some away. Why else would we read…..there is NO pleasure in your pain for us followers…We are waiting for you to be okay…to know there is a bit of light…and we will be here until there is.

  11. Rachel

    Hi Maya, I have been following your blog since the very beginning. I have fallen in love with your incredible sons and have been silently supporting you since your very first post. I work for an organization that serves pediatric cancer patients, Brent’s Place. I encourage you to look us up and learn about it (www.brentsplace.org or http://on.fb.me/z4qZnj) . We are a housing facility for children and their families with cancer in Denver, Co. Currently we have three kiddos with Neuroblastoma and everyday that I watch their battle I think of you and Ronan. Reading this last blog entry I realized that I might be able to help you with the “non-profit” aspect of running a foundation. Brent’s Place was started when our founders lost their incredible son to cancer and almost our entire staff is here because of a personal loss. Please let me know if you want to talk about ways to research spending funds, volunteer management, building a board, or just how one person really can make a huge difference in this fight against cancer. I look forward to hearing from you, and hope to be able to help you in your fight.

    thank you, Rachel

  12. Valerie Shealer

    Maya, stopped following your blog and just came back. I don’t know how you are surviving, seems like going thru motions, at times. Your pain hasn’t eased a bit, and in fact, if it can, seems worse. Maybe once you make decisions about the foundation money you might feel pain ease a bit? I hope the current “Maya” will be able to experience more joy and happiness in the future <3.

  13. Heather L.

    Oh Maya. My heart hurts for you so badly. Praying for peace for you. I am so very sorry you are hurting. I can actually *feel* your pain through your words and it makes me cry. Please know that I am thinking of you.

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