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