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

Self control vs Self destruction. And Happy Fucking New Year.

Ronan. Happy Fucking New Year. No. There will never be anything “Happy,” about it again. This is how I know I will never be normal again. This is how I know, I will continue to live in Zombieland. Because everything stings so much that I can’t be among the living. Everyone is so busy being happy. It’s as if they have all forgotten about you. But what do I expect? For everybody to take this year off, from celebrating their beautiful lives? For the ball not to drop in New York City? Exactly. I told you life goes on for others.

We are back home and I’ll admit it, I’m acting like a brat. We got home on the night of our 10 year anniversary and I just couldn’t do it. I couldn’t fake it at all. The happiness that I am supposed to feel. I am thankful….. For as much as I can be. But feeling happy just does not exist. Your daddy didn’t ask much, but the little he asked, I couldn’t do. All he wanted was some acknowledgment that our 10 years was a big deal. I gave him my snarky commentary about why the fuck does everyone make such a big deal about 10 years, when every year should be just as sacred and valued. I begged him to please just skip over the 10 years and next year we could do something nice. I don’t want to celebrate anything when everything feels so wrong. He told me he had a gift for me which made me lose it even more as I specifically told him there was nothing I wanted. He said he knew, but it was something he wanted me to have anyway. I pretty purple amethyst ring. I told him to take it back. He told me he wanted me to know how much he loved me. I begged and pleaded with him to take it away and told him I didn’t need things to know how much he loved me. That I already knew and would always know. He insisted that you would love for me to have it and that you would have told me how “cute,” I looked wearing it. I just laid in bed and sobbed while I kept one eye on your Urn. I made him take the ring away and told him I wasn’t worthy of pretty things because I let you die. I fell asleep in a puddle of my own tears. I had spent the day being so proud of myself for the stupidest things that I used to be able to do, in my sleep. I got your brothers from Portland to Phoenix, safe and sound, all by myself. I checked in our luggage. We had dinner at the airport. We made it through security, to our flight, and home. This is a big thing to accomplish, when you have a dead child. Traveling with 2, not 3 little guys was such a mental head game, that I really don’t know how I did it. But I did and I of course, did a fucking good job. Gold star for me. After we landed in Phoenix, I listened to myself, telling myself in my head, what a good job I had done. Then I went to, are you FUCKING kidding me? This is something that you now get to be proud of? Something you used to be able to do in your sleep? What kind of fuckery is this? Well, I’ll tell you. It’s the most fucking fucked kind of fuckery that exists. It is my life now.

I ran around all day Friday, catching up on things and being pissed off that I was wearing a strapless dress because it was hot enough in January, to do so. Bloody hell. Where was my rainy gloomy weather that is so able to explain how I feel, without me having to say a word? Where were my rain boots and dirty, muddy puddles of tears? The tears that I was able to take a break from crying because the weather was able to cry for me just for a bit so I let it. They were back in Washington, that’s where. So, I spent all Friday, running about being blinded by the fake plastic trees of this world that I feel like kicking the shit out of. Where I have to put on my fake, sunny smile because that’s what the weather wants me to do but Ro, I don’t want to do it. I want to go and live in my underground world with all the other bereaved parents of the world where happiness and sunshine no longer exist. I don’t want to have to listen to the others in the world as they complain about their bad days which include things like getting a flat tire or their nanny being sick. When I hear these things it is all I can do to not cover my ears and drop down into the fetal position. Maybe I should just start doing that. I wonder how different this world would be if we all acted the way we felt really felt instead of hiding everything behind our lipgloss and dark sunglasses. I’ll bet it would be a complete mess but at least it would be a TRUE complete mess and not so fake and insincere. I was also having some major mom guilt on Friday so one of my errands included going to the grocery store. You know how much I hate this now, Ro. I freeze up, freak out, and panic. I made myself do it because the thought of your brothers living off of processed food any longer is destroying me. I don’t cook anymore, unless you count cereal, frozen pizza, fruit or veggies. Your daddy has taken over the majority of the cooking. It is something that I used to live for back in the days when you were here and you were my favorite little helper. The two of us, cooking together, was my heaven. I wanted to make your daddy feel good by coming home to a home cooked meal, like he used to. The one he deserves to come home to, every night. I made it half way through my shopping, panicked over some mom who was pushing her little boy in the cart and almost abandoned all of my groceries to bolt for my car. I took a deep breath and stopped myself from doing so. I had to talk myself through every next step in order to get to finish up the shopping and get to the checkout line. I couldn’t get out of there, fast enough. I came home and whipped up dinner, without a recipe or anything. Just from memory only. The one that does not really exist anymore. I made your daddy and brothers, homemade Shepard’s Pie. Your daddy said it was the best one I had ever made and wanted to know what I had done differently. I wanted to tell him how the only thing I did differently was cry the entire time I was making it because I couldn’t stop thinking about how you wouldn’t be there, to eat it with us. Sitting down, at our dinner table with your seat, empty is also something that just kills me. So, I may have made dinner, but I couldn’t get out of the house fast enough for the plans I had made a few days in advance.

I spent Friday night with some girls which I never take the time to do anymore either. We didn’t go out, but rather stayed in, instead. I picked up Mandy Bee and we headed out to Kristi’s house for a special night which of course was inspired by you. The best nights, always are. I know you were there, I know you saw and that’s all I’m saying about our night, for now. It was a true rock and roll night, in the most innocent way possible. It was a night that for as painful as it was, I actually felt myself having fun. Thank you, K…. for such a wonderful night. I don’t get those very often anymore. It was nice to let everything slide away for a bit and get lost in a world of beauty parlors, some good reality T.V. laughs, and a little blood, too;) And Mizpah, Mandy Bee. Thank you. I love you my crazy stalker bestie. Thank you for not being afraid of the dark with me. No matter how scary it gets. And for breaking down my door when I won’t pick up the phone, the lights are off, the doors are barricaded shut but you somehow manage to break them down anyway. I know you didn’t know him, but how I wish you would have. Thank you for loving him like you did.

I don’t know what happened today except for we all slept in and that seemed to throw everything off. I woke up, did the big breakfast thing with your daddy and brothers, threw up, showered, and ran out to get your daddy’s car washed just to get out of the fucking house full of loud T.V. and noise. I ran to Smart and Final to stock up your brothers drinks for their school lunches. I had a panic attack in the parking lot and had the urge to do something really self-destructive. Anything. I seriously contemplated driving to the nearest bar to get shit faced drunk. And I don’t even drink, Ronan. But I wanted something, anything, to make this pain go away even if just for a short amount of time. I wanted a break or to feel something differently, than this. Anything. I sat, cried, almost did…..but did not. Self destruct or self control? Today, self-control won. I am scared for the day that it will not. I came home exhausted from the hour I spent crying, fell into bed and drifted in and out of sleep for the next 4 hours. I hid in our bed, until the bright sun disappeared and I had enough of dreaming the dreams where all I can seem to do, is cry and scream in them. I feel like I live in between two worlds. One of real reality and one of fake reality. They both suck and I can’t win either way. The dreams I dream of always involve watching myself cry due to this nightmare. Happiness does not exist, anywhere without you, Ronan. At least not for me…. not even in my dreams.

Alright baby boy. This is enough for tonight. I wish I had something happier to say… an ounce of hope to give you…. a glimmer of the happiness that I hope to one day be able to feel again. But this is me, today. This is the best I can do. I guess just be proud that I am here and I didn’t drive off the cliff that I made up in my head today. I love you so much. I miss you every second of every day. I hope you are safe.

xoxo

Dear Lovely Little Blog Readers,

Thank you. For sticking with me. For hugging your kids tighter. For appreciating everything in your life, so much more than you did before you knew Ronan and our story. Thank you for helping me keep him alive by thinking about him, loving him, and letting him make you all better people. It keeps me going even during my darkest hours. I wish you all only health and happiness in 2012. Because we all know if health exists, then happiness does too. I love you. Ronan loves you. Please be safe! No drinking and driving!

xoxo

A Dangerous Day Indeed

Ronan. Today, I lived. I lived and I didn’t feel like dying for the first time, in a long time. But I am still aware of the reason it is, that I am trying to live this life to the fullest. I am aware that it is because of your death, that I have no choice but to go on and try to live this life now that I am without you. That is a heavy things to carry around with you, when you are just trying to survive. It weighs you down but at some point, you just have to try to get used to carrying this weight around with you now. Because it is never going away. I met Mandy Bee, Kristi and her friend, Jacqueline, at Scottsdale Gun Club. I’ve never shot a gun before in my life. Well, that is not totally true. I’ve shot a bb gun a few times. I think I tried to shoot my little brother once, when we were little with one. But that is the extent of my gun experience. Today, I had no idea of the awesomeness I was in for. I should have known just due to the company that I was in. We arrived, Mandy and I had to watch a little video before we got started. Kristi and Jacqueline are pros. Jacqueline has been shooting guns since she was 9. Badass. We made some pretty little targets to shoot at. Most of them said, “Fuck You Cancer.” or “Cancer is an Asshole.” I made one, for a specific person, who shall remain nameless. But it felt the best when I was shooting my machine gun, at this sign. I also made one for Inferno Fuckwad Bob. Jo would have loved that. We shot a couple different machine guns, a pistol…. I have no idea of the actual names of these guns. All I know is it was the best therapy I’ve had in a long time. I took out a lot of aggression and anger today on those targets. I felt empowered. I am woman, hear me roar.  I told Woody I want a machine gun, for Christmas. I was joking, of course. But that is how I feel. Like life is so fucked up that I should just be able to walk around and carry a machine gun with me at all times. To kill all the zombies that are trying to eat me. You would have loved today, baby doll. I know I made you proud. Check mark number 1 for your little bucket list  that I am going to carry out for you. Thank you K,M and J for today. It was a day that Ronan would have loved.

After our little Baby Danger outing, Mandy Bee and I went and grabbed some lunch. I told her I was freaking out because I hadn’t worked out today, so I was going to go home and try to get in a run before I grabbed the boys. She told me I should just come over and I could workout at her house. She said she would teach me to box. Sign me up! Another thing, I’ve never done. We got to her house and changed. She has a punching bag hanging in her garage. I told you this crazy stalker girl, is my kind of girl;) One that keeps a punching bag hanging from the ceiling of her garage because she likes to take her aggression out on things that she can hit. It was pouring outside. We turned on some loud music and bootcamp Mandy was in full effect. She yelled at things for me to do. I did them. After about 20 minutes of doing whatever she told me, it was time for my little punching lesson. I put on her gloves. I tried to focus on my form and breathing. Mandy held the bag and screamed a lot of fuck words for me. It was hard. Really hard. Next I took off the gloves. It was time to hit the bag, with my forearms. I can’t remember what Mandy called it and I didn’t care. All I knew is I was beating the shit out of something and I didn’t want to stop. I continued. She told me that was enough. I told her no. I wanted more. She told me to look at my arms. They were all scraped, bloody, red, bruised. I told her I didn’t care. It didn’t hurt me. She let me go another round. She had to pull me away. We worked out in the pouring down rain. I didn’t have shoes because I had worn my boots earlier in the day. So we were both barefoot. After our kicking workout in the rain, we went on a run. Barefoot. We came back to her house. I told her I wanted to punch the fucking bag again. She let me but finally told me enough was enough. She wasn’t going to let me hurt myself anymore for the day. I felt like what I bet a crack addict feels like. I wanted more. My bruised and bloody arms, told a different story. I can hardly wait for my next little punching lesson. I really did tell Woody that I want a punching bag and boxing gloves for Christmas. Preferably purple.

You know how I am when I say I’m doing to do something, Ronan. I don’t half ass it. Today, I didn’t do just one thing I’d never done before. I did three. I told Tricia this and she laughed and said, can’t we just ease into this and your new danger plan? I told her no. I’m already plotting as to what next week has in store. Although your brothers will be out of school for break, so I’m going to have to get creative so I can include them too.

I’m tired tonight. Sore. I spent the rest of the evening, feeling sick to my stomach due to the crazy Mandy Bee Bootcamp. It’s still raining. Pouring. I hope it never stops. I love you. Today, I missed your smile so much that it took my breath away. You have the most beautiful smile baby. I miss you. I love you. I hope you are safe. Sweet dreams my little wild and free soul. I hope you saw all I did today and you know it was all for you. Always for you. G’nite.

xoxo

Mandy the Owl, Ben with the Bald Head, and Bret the Rockstar

Ronan. I guess I’ve had a hard couple of days. So many things have happened. Everything seems to be moving so fast, yet so slow. I’ll have to catch you up on some things since it’s been a couple of days since I’ve written to you. I drove up to Sedona on Tuesday to see Dr. JoRo. I could have seen her here in Phoenix, later this week but I honestly like the drive up there and back. It’s my quiet time in the car. I don’ talk on the phone. Sometimes I listen to music. Sometimes I don’t. I am always thinking of you. I cry a lot. Here in Phoenix, I feel like I am constantly on the go. It’s a race that often leaves me exhausted and I don’t get to sit and be quiet much. I am still trying to find that happy medium of grieving for you and letting my self being absorbed in the pain; without slitting my wrists. Sometimes it hurts so much that I’m scared to sit and just let myself just be. Sometimes I don’t think I can handle the pain. I worry about what will come of it. My mind can slip into a very dark place, with the blink of an eye.

My time with Dr. JoRo was long. Grueling. Good. We talked about everything. I always find myself staring up at your pictures a lot that she has on her shelf of the thousands of books that she has read. I cried a lot. She cried too. We listened to a song together as the tears slid down both of our cheeks. There was a lot of crying. There was a lot of fucking fuck words used by the both of us. She is helping me with a little research as far as trying to figure out who we want to help fund treatments for Neuroblastoma. I don’t want any of this money to go towards a fancy hospital building and advertising. I don’t want this money to go towards building a wing of a hospital with your name on the fancy door. FUCK FANCY. This money has to go directly to the RESEARCH aspect of this disease. This money that we are trying to raise will go to the team that we believe in with our whole hearts and souls. The team that we feel will up the survival rate and ultimately, find a cure. This has to be a doctor/facility that is going about things differently. Because obviously what they are doing for this disease is NOT working. But they keep doing the same thing, over and over. If you survive Neuroblastoma, it’s by luck of the draw and nothing more. I have 2 doctors I am interested in. I’m putting their names out there tonight. Dr. Giselle Sholler and Dr. Yale Mosse. I know Dr. Mosse from Chop. She is the one who has a little piece of my heart due to her passion for finding a cure for the nasty disease. But her hands are tied by the COG. I am not a fan of the rules she has to play by. If anybody wants to throw info my way about Dr. Sholler, or anyone else, feel free to do so. I’ll take all the help I can get. I want to meet with them both. I want to see the evidence behind what they are doing, and why they think it is going to work.

Dr. Jo knows you shouldn’t have died. But you did. She is going to help me every way she possibly can. She is doing more than just saving my life. She is going to help me fight this Childhood Cancer nobody gives a fuck, BULLSHIT. We talked about your Foundation. She tried to tell me I didn’t have to do any of this if I didn’t want to. I looked at her, gave her a half-smile and told her that it wasn’t my choice anymore. I told her I am not choosing to do anything. For me, this is not something that I am choosing to do. It is something I HAVE to do; just like I have to breathe, to stay alive. She looked at me and said she knew I was going to say that, because she felt the exact same way, 17 years ago when her baby girl died and she was locked in a closet, going through the Yellow Pages, trying to find someone to help her get through losing her baby girl. There was nobody. She almost died from the pain. She swore to Chey if she lived through it, she would change this and help other parents. The MISS Foundation was born because of her pain and because she survived. She survived, Ro. And now look at all the people she is here, helping. She is saving the lives of so many parents who feel so alone. She is a walking billboard for surviving one of the worst thing that can happen to a person, but she still managed to come out the other side even more beautiful than before. Stronger. Smarter. Wiser. It changed her in a way that a person never wants to be changed. As sick as it is, the death of her child has turned Dr. Jo into someone who fucking lives on this earth, walking on water. I know she doesn’t feel this way, as she is so ridiculously humble. But this is the way I see her. To me, that woman walks on water while cussing up a storm which makes me love her even more.

After I got home from a really long Sedona day, I had a meeting to go to for your Foundation. We had to choose some new board members. As of now, our board is really small and intimate. I want it to stay this way. I need the people on it, who have walked through hell and back with me. Who you knew and loved because they are family. My sisters. The board meeting was VERY formal which was so weird to me. I got about half way through it but then my head started spinning. I lost it. In the middle of everything, I buried head on the table, in my arms, and just started bawling. I felt the hands of Fernanda and Tricia rubbing my back. I stayed that way for a few minutes. Then I just got up and bolted out of the restaurant, crying, crying and crying. Just like that. You know what I wanted to do? I wanted to run really, really, really far away. To the most dangerous neighborhood in Phoenix. I wanted to run out in the middle of traffic to get him by a car. I decided the boots I was wearing were too cute to ruin, so I sat down on a bench instead. I sat and soon Fernanda came and sat down with me. She sat and held my hand and pressed it up against the locket that I gave to her with some of your ashes in it. She kept asking me where I was. Where my head was. I couldn’t even answer her. I just sat and cried. I think we sat there for about 20 minutes. I ended up trying to gather my thoughts. The fact that I was sitting around that table last night, talking about you, like you were a business made me sick to my stomach. It was too much for me to handle and I went into it, completely blindsided. I felt like I was being beaten to a pulp. I felt like my insides were being ripped out. I felt like I wanted to just die. I went home, after that meeting, looked at Warden Woody and said, “Give me a fucking Ambien.” He tried to argue. I wasn’t having it. The running off of 5 hours of sleep, for the past 3 days was caching up with me. After yesterday and last night, I couldn’t do another night of tossing and turning. I popped that little Devil and it was lights out until 7 a.m.

Today. Groundhogs day, all over again. Met a Lovie for coffee. Cried. Our lovie, cried too. Talked. Cried. Made some promises. Took a drive with her. It felt nice. Ran to meet Miss Mandy Bee for lunch. She came wearing her Owl SPIRIT HOOD because she is that crazy, that she thinks she is a Goddamn Owl, in real life. And we are both that weird that we like to wear our animal Spirit Hoods, everywhere, just the way you and I did. I’m wearing yours now, as I sit here and write. We sat outside at America’s Taco Shop. Mandy had some exciting news about getting the word out there about you. Just as we were in the middle of talking about you and I was starting to tell her what bullshit this is, that you died of this disease because nobody’s voice has been powerful enough to make the fucking world stop and LISTEN. Why the fuck does this have to be me? This should have been somebody else, 5 years ago and then you would not have to be fucking DEAD. I started to get really upset. I started throwing a pity party to Miss Mandy Bee. Why me? Why him? I don’t want this. I want this to all go away. I want him back. I don’t want to stay on this earth. I want to die. I don’t want to fucking do this. Just as I was saying those words, Ronan…..He appeared. Outside. On the patio where Mandy Bee and I were. Ben. What the fuck. Somebody is clearly messing with me, Ronan. Ben with the Bald Head. I looked at Mandy. I seriously thought I was dreaming. Mandy watched me, she grabbed my hand. Do you want to leave, she asked? No, I said. His Dad came and sat down and said Hello. His mom came out next. She looked at me and said, “You’re Maya, right?” I said indeed I was. She asked if I remembered her from the clinic. I had forgotten her face. But I remembered Ben’s. I stood up to give her a hug. Her husband hugged me as well. We sat and talked. They looked sad. They looked scared. Ben looked beautiful. I wanted to eat him up. I wanted to spend my whole day getting lost in his dimples while kissing the top of his bald head. His mom kept saying she felt like they were upsetting me. I was upset alright, but it wasn’t for the reason that I think she thought it was. I was upset because just 10 minutes before they arrived, I sat and bitched that none of what I was doing, mattered because you are gone. I gave into the selfish Maya that sometimes comes out because the bottom line is, YOU ARE DEAD. But Ben is not. Ben is here. Ben is still fighting. Ben saved me today. I know that was a sign from you, Ronan. That was too much of of coincidence, for it not to have been. That was your way of communicating with me. That was your way of saying, “Hey Mama! Don’t give up! I’m right by you, helping you. Mama, you have to be the loud voice now. You have to take everything you are doing and keep going, for all the other kids out there. For all the other kids who deserve a future. For me, because this is what we were meant to do, together.” Ben was you today. And Ben was exactly what I needed at that exact moment. I know it was you. Thanks, Ro. I’ll keep on truckin’ until the world turns into a sea of Gold for SEPTEMBER. But PURPLE, for you. Ben gave me a big hug goodbye. I kissed the top of his head. It reminded me so much of yours.

I spent the rest of the day, lost in what had happened at the Taco Shop. I ran over to Katie’s store. I was sitting at the counter, with my computer, doing some things. Christy and Katie were behind the counter, working. Pandora was on, as always. As I was sitting there, one of your favorite songs started to play. Angus and Julia Stone, “Big Jet Plane.” I sat there, stunned. I looked up and said to the girls, “This was Ronan’s favorite song.” I covered my face and started to cry. Christy asked if I wanted her to turn it off. I told her no. About halfway through the song, my phone rang. Of course it did. Was this you too? How does this always happen, every time I seem to be having a really hard moment? Our favorite lovie always knows when to call.

I picked up. I said one word.

“Hello.”

“Why are you crying?”

-how the fuck does he know i’m crying?? all i did was say hello.

“I’m not. I’m fine. I don’t know.”
– i start to cry, harder.

“What’s going on? Yes, you are, cut the bullshit and tell me what’s going on. Please.”

fuck. why can’t i ever pull the wool over our lovie’s eyes? i don’t want to say why i’m crying. but i did.

I think it went something like this……”Because I’m sad. Because of the song on the radio. Because of the board meeting where Ronan is a business. Because I miss him. Because of Ben at America’s Taco Shop. Because of Thanksgiving. Because I have to fucking survive Thanksgiving. Because I don’t know how I’m going to get through it. Because I haven’t slept. Because I want him back. Because I JUST WANT HIM BACK.”

Silence.

“I’m sorry, darling.”

I don’t remember much more of the conversation. But by the time it was over, I had stopped crying. It was enough. It was like an invisible hug, from you.

I left to pick your brothers up from school. Quinn had a sore throat so I had made him a doctor’s appointment earlier in the day. I stopped to feed your brothers, before our appointment since we didn’t have time to go home. I went into Jack and the Box while your brothers waited in the car. It was pretty empty. There was a man at the counter. You could tell he was homeless. He was dressed as nice as he could possibly be. His shirt was tucked into his pants. He was older, probably in his 60’s. He was pulling out coupons to pay for his 3 dollar meal. He smelled awful. He needed a haircut and a shave. He was hungry. I could tell he was so very hungry. I waited my turn. I watched this man with the kind, sad eyes. He didn’t seem to notice me. I watched as he paid for his food. I watched the way he sucked down his drink like he had not had anything to drink, in days. I’m ashamed to say, in my old life I probably would have felt sad for this man, told myself you are so lucky, Maya. But it is very possible I would have just looked the other way while counting my blessings. Not today. Today, I wanted nothing more but to take this man home. Feed him. Let him shower. Give him clean clothes and a bed to sleep in. I wanted to sob for this man. I wasn’t sure what I was going to do, but I knew it wasn’t going to be nothing. I paid for my food. I watched the man, standing at a table, putting his coupons away. I took out one of your cards. I wasn’t sure how do approach this man, as I didn’t want to offend him. I walked over to the table that he was sitting at. I gave him one of the cards with your picture on it. I handed him a 20 dollar bill. He looked at me and said, “No. No. Really? Is it that obvious?” I simply said, “No. Not at all. This is not from me. This is from my son. He died of cancer. He wants you to eat.” The man tried not to accept my 20 bucks. You could tell he wanted it, but you could tell he was also a man who still had a pinch of dignity left. He told me thank you. He told me that I should save my 20 dollars and give it to the humane society. I told him I didn’t want to save an animal.(sorry. i’m am a animal lover. but these days, kids with cancer just tug at my heart a little more. today, this hungry man, tugged at my heart a lot more) I told him to please take the 20 bucks. I told him to go and do something kind for someone else. He promised he would. I believe him. He told me, that he had just spent his last 3 dollars, on his meal. I am such a skeptic of human beings, Ro; but not today. Today, I believed this man. Today, I believed in the human spirit and I believe that, because of you. It’s days like today that I know that you are making me a better person than I could have ever imagined. It’s days like today that I realized that I need to stop fighting all the little gifts you are leaving me because I know they truly do exist. And I know I am worthy of receiving them. I know they won’t bring you back but I know they will keep you alive.

I have to go now, Ro. Too tired. Too sad. Too much. I love you. I miss you. I’m sorry. I hope you are safe. I love you to the moon and back, baby boy.

One last thing. But not a little thing. A HUGE thing. Bret Michaels. Bret Michaels the kick ass Rockstar who is the genius behind the band, Poison. Bret Michaels went on the Regis and Kelly show today. He wore your F U Cancer bracelet, Ro. He is spreading the word about you. Can you believe this???? I am in awe. We so need people like this, behind your cause. We so need a voice for Childhood Cancer. Education=Awareness and Awareness=CURES. People have to start listening. Because of what that man did today, they are going to listen. I have a feeling the gorgeous woman in his life, had a little something to do with this as well. It takes a strong family united, to get things done. Today, they did this, for us. For YOU. For all the other parents and kiddos out there who have been forced into this nightmare. For all the parents and kids out there who are helpless and so scared. He helped us all today and I wonder if he has any idea, how much it means? How this could really get the ball rolling and start changing things. Because babies/kids/teens need to stop being fucking MURDERED by Childhood Cancer. So Mr. Kickass Rockstar Bret Michaels. Thank you from the bottom of Ronan’s wild and free heart. I know you know that all good things, truly are wild and free. You are an amazing man. And gorgeous Kristy. Thank you for being the raddest wild and free mama, behind this man by doing something so selfless and kind. You two, are amazing.

Ro baby. Did you ever in your life think that for only being almost 4, that you would have so much power? I always knew this. Your beauty alone moved mountains while you were among the living. Now look what it’s doing and you’re not even here, Ro. You are that special, beautiful, and magical. You will always be mine. And I will always, be yours. Forever. I love you.

20111117-012557.jpg

4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

You are my God, my Heaven, and someday, my Peace

 

 

 

Ro baby. Hi. I’m still here. I’m going to say, unfortunately, because that’s what I’m feeling at this time. As much as I talk to you and ask you to take me with you…. I don’t think you are going to. You want me here, on this earth, and I have to do my time. I feel like I’m trapped in a prison cell and nobody is ever coming to free me. And I know you know why. It’s because nobody can save me, but myself. I have to learn how to set my soul free, to be reborn again because of now, I still feel like I am walking around dead. I cannot go on like this forever which is why I am forcing myself to do things that I really don’t want to do, but I know if I don’t, everybody loses. Even you. And that is not acceptable in my book because I have so much making up to you to do. I will tell you I’m sorry everyday, 20 times a day, for the rest of my life. I’m sorry for so many things. But most of all, for not being able to save you, when I promised you I would. I will carry the guilt of that around for the rest of my life.

I’ve tried to do a lot this week. Physically and mentally. I have to start trying to fix myself, bit by bit.  I’ll never be fully repaired, but I hope to find pieces of myself here and there and put them back together. My pieces will never fit perfectly again, so I’m going to have to relearn how to live with them, as shattered, cracked, bruised and battered as they may be. I have to learn how to live with this pain now, if I am going to stay on this earth.

This week is almost over. I’ve done a lot. A lot of therapy. A lot of mommy things. A lot of being productive. I want to say fuck it all and not do any of this. But I have this fire that lives inside of me now that refuses to let me be quiet and give up. I am pissed at the world and have too much passion from the pain of losing you. I’m not giving up. No matter how many doors I have slammed in my face. I deserve answers, I deserve to hear I’m sorry from the fucking medical world that failed us, I deserve to create changes in this fucked up world of childhood cancer. I deserve to help others. It is what you would want. You would want me to find a reason to go on. You would want me to break down every fucking door to get there. I will make you proud of me. I know how much you loved me. I know you loved me more than anything or anyone. I know you will always be proud of me, which is why I refuse to give in to this hell that is now my life. And FYI….. Fuck this Zoloft. I’m done with it. I’m not taking it anymore. I know I’m going to be told to wean myself off of it, but too bad. I’m stopping it cold turkey. Is that dangerous? Maybe. Is it going to kill me? I doubt it. I’ve made my mind up about this and you know how I am once I make my mind up about something. I don’t want to be on a medication because my feelings about losing you are too intense. I needed this medication during your treatment, when you were still here with me, because I took care of you, 24/7. You are gone now. And I am done with this crap. I don’t want to live a life of being on meds. I want to be cleansed. I want to get back in touch with my reality, without being medicated. I’m strong enough to do this. And if I’m not, I will reevaluate the situation. I’m not ready to give up my sleepy meds yet. The Ristoral that I have taking makes me less insane. I’m sleeping a little better. I’m not saying crazy things in the middle of the night to your daddy like I was before. That drug is hardcore and really messed with my mind. I don’t like to feel out of control and that is how I felt when I was on it. I’ll admit for a while, it felt kind of good because it was an easy escape and I didn’t have to be responsible for the way I acted. I could just blame it on the Ambien. I don’t want to have to blame things for my behavior. I want to be able to blame myself, not some drug that is effecting my sleep and my life, so deeply. I still need the Ristoral though. I’m not even close to being at peace with anything and I know that trying to sleep on my own is torture. The lack of sleep that comes with all of this is something that I cannot handle at this point. I need sleep. I need a break from everything and sleeping is the only break I’m going to get.

At this point in my life, I feel like I’m on autopilot. I think I’m back in shock again. I talked to you after my run tonight and I didn’t even cry. It was strange as I am always able to cry about you. Not tonight. I sat there, in the dark, on a bench, and talked to you but no tears came out. I feel numb. I feel like I don’t want to feel anything so I am going to just shut all of my feelings down. This is when I decided to screw the Zolfoft. I think this may be part of the problem. I want to feel and not feeling anything tonight, scared the shit out of me. I don’t have normal feelings at all. Happiness, excitement, and hope are not part of my world anymore. Feeling love from others feels foreign to me as if I’m not worthy of it. I feel nothing. Today, I was able to put on my FUCK CANCER game face and put together a plan of attack. I was able to figure out what steps I need to take in the right direction to make a difference. Baby steps, but I have somewhat of a plan. I have an idea for a plan of one of the many things I want to do. I have to do because I am so angry about the lack of knowledge we were given when you were diagnosed. It is unacceptable and cruel. And fucking bullshit. I know that things take time and baby steps are necessary. Baby steps are a start in the right direction and I know they will lead to bigger and better things. Good thing I am a patient person by nature. Patient but passionate. I think those things will both work in my favor.

I have so much more to tell you. About the amazing lady I saw from the MISS foundation this week. For the first time since losing you, I felt like maybe, just maybe, I can survive this. I can change things. I felt this way because Dr. Joanne may be one of the most incredible souls I’ve ever come into contact with. Instant connection not to mention she is brilliant. And compassionate. She’s taken her pain, educated herself on grief, and turned it into an amazing organization. She inspires me. I need to be inspired right now. I need to see that great things can come out of something so tragic and awful from losing a child. I need to know that I can become a better person through all of this and make a big mark in this world by helping to find a cure, by helping other families, by giving all I have to give. I am going to take everything I used to save you, and throw it into helping other people. I know I’m not ready for this just quite yet, as I have some things I have to work on myself. I have to make sure your brothers are o.k. as they need me more than ever. I cannot let them down. I have to do this for you. They deserve to have the best life possible. I have to be a part of making that happen. I cannot just check out, Ro. It’s a lot of pressure but I think I can do it. I promise to try my hardest.

I’ve worked out everyday this week. Hiking in the heat, boot camp, running. It all feels good. It makes me feel alive for about an hour which is better than nothing. It makes me smile when I feel the sweat stinging my eyes. It makes me realize for a small moment in time, I can feel again. It’s not always good, but it’s better than being numb. I don’t want to walk around this life like a robot. I want you back more than anything but I know that is not going to happen. But I also know that I will see you again. We will meet up in our next life together and it will be even more amazing than this one. I truly believe that. Our bond and connection is too strong for that not to happen, my love.

That is all for tonight. I love you to the moon and back, baby boy. I hope you are safe. Please watch over all the beautiful souls that love you so much. Please visit them in their dreams. You are not ready to visit me yet, as I am too consumed by my pain. You will know when you are ready to see me again, to let me know you are safe. Please keep your brothers safe. Thank you for keeping Fernanda safe. I know that was you. I know you are part of her soul. I’m not thanking God for anything anymore, Ro. I’m thanking you. You are my God. You are my heaven. And someday you will be my peace. I love you so much. I miss you every second of the day. I promise I won’t let you down.

Sweet dreams my little devil.

xoxo

 

To live with ghosts requires solitude

Ronan. Is the world ending? I have never in my life had a year full of so many awful things happening around me. 2 deaths on Coronado a couple of weeks ago. I don’t know much about what went on, as I don’t watch the news or read the paper anymore. I only heard the whispers of others around me. I heard that the little boy passed away a few days ago. It made me cry. It made me sad. It made me angry for this fucked up life that his parents will now have to go on living, without their little boy. After an awful night of sleep last night, even with my Ambien, I woke up to very sad news. A girl that I had never met, but we had talked via email many times, lost her battle with cancer.  A young girl, around my age. She was married and she wrote an amazing blog about her life, her passion, her strength and her determination to beat it. Her name was Jen and I followed her blog. I don’t follow anyone’s blog, but I stumbled on hers a couple of months after you were diagnosed. I reached out to her, to tell her how inspiring she was, how much she inspired me to keep fighting for you and to never give up. She emailed me back and it went from there. I fell in love with her and her fighting spirit. I told her I was convinced that the two of you, would beat the odds. We tried to meet up in New York City the last time I was there with you, but it just didn’t work out. She was sick and you were sick. She so wanted to meet you and I so wanted you to meet her. I wanted to wrap my arms around her and give her the hug that she deserved. She recently went all the way to Switzerland with hopes that this new trial would make her better. It didn’t work. This is all so unfair. I hope now you get the chance to meet her. I hope you will look after one another. Her service is tomorrow. She loved life so much and wanted her leaving of this world to be celebrated. She wants a dance party for tomorrow. This is what was posted today:

As you are all aware, Jen’s funeral is tomorrow and we wanted to give you some insight into Jen’s last wishes regarding honoring her memory. Jen believed “life was for the living.” She wanted her funeral and any other memorials to be as much of a celebration of her life as possible. In fact, she even wrote of possibly wanting a “dance party!” In that vein, please feel free to smile and laugh as you recall special memories of Jen and please dress however you like. Jen would have loved there to be some color in the room and not have everyone dressed in all black! 
As much as Jen wanted her memorial to be upbeat, she was respectful, however, that everyone mourns in their own way and that there was no “right” way to do so. Please help us honor Jen and her legacy in whatever way you see fit. 
We have cherished reading the tributes written here and on Facebook. Please continue to contribute memories, thoughts and wishes. Those who love Jen have already taken great comfort in your kind words.
PLEASE TAKE THE TIME TO READ SOME OF HER STORIES. HER LINK IS ON THE SIDE OF MY BLOG, UNDER MY OTHER HERO. OR GO TO WWW.YOUFEARLESS.COM
LET’S HELP HER CONTINUE HER FIGHT AND HER VISION. SHE NEEDS EVERYONE NOW MORE THAN EVER TO KEEP HER DREAM ALIVE. I LOVE YOU, JEN. TAKE GOOD CARE OF MY BABY.
Although I didn’t know Jen, she inspired me throughout your journey, Ro. She was all about living a life without fear. She felt, if you took fear out of the equation, you could accomplish anything. I am absolutely sold on what she believed. Fear is for the weak. Fear is for the ignorant. Fear can ruin your life. If there was ever a time that I was feeling defeated, frustrated, mad, or just plain tired, I would often time read Jen’s blog and email her to tell her thank you and how much I believed in the two of you. You two should have both survived this. You two should have both beaten the odds. My heart breaks for everyone who knew her, but how lucky they were. I hope you two have the biggest dance party tomorrow together. She would have fit right in with us and our love for dance parties, Ro. I know you two will take good care of each other. In honor of her tomorrow, I am going to make another music video just for Jen. Get ready for another youtube hit:)

I also found out that one of  our good friends’ brothers, Eric, passed away from cancer yesterday. I spent a summer in Newport with your daddy and Eric when your dad and I first started dating. He was such a gentle soul and I always felt as his eyes were smiling. My heart is beyond broken for his family. I called your daddy tonight and we talked about him going to the services on Saturday. I told him I really think that he should. We both won’t feel right if he doesn’t go. Mark has been a very good friend to us. Your daddy should be there for him. Eric leaves behind a wife and two little boys. I just want to know what the fuck is going on in the world. Two amazing people, just gone. It’s as the world is opening up and swallowing all of these beautiful souls up, one by one. It is beyond unfair. Hey world. I have an idea. Why don’t you take the freaking Casey Anthony‘s of the world instead and leave all of the amazingly good people alone. You are about to royally piss me off and I am on the verge of doing something crazy just to see if I can fucking cheat death and survive the odds. Fuck you world. You can piss off.

I went to Yoga this morning. Yay me! I have been saying I was going to go all summer, but I just haven’t gotten myself to do it. No Yoga fail this morning. Liz picked me up and we headed off to do a class. I was afraid to go this morning. I have been avoiding it. The last time I went to Yoga, was while you were in the hospital. I went and ended up crying pretty much the entire time. It seems to open up a lot of emotions for me. Today, I was o.k. I tried to focus all of my energy on you, Jen and Eric. I tried to stay positive. At the end of the session, our instructor asked us to close our eyes, and to be thankful for the life we had. I had to restrain myself from standing up and screaming at the top of my lungs that I was not thankful for life, because you are gone. I am mad today, sad today, lost today. I don’t know who I am without you. I don’t want to be anybody. I am trying to take these thoughts and make them motivate me. Motivate me to do something amazing for you. I will, because if I don’t, then who the fuck will? Nobody. I have to take these lessons that I have learned and turn them into something good. For the sake of you, and all of the other people in the world who are affected by cancer. Nobody is safe. This can happen to anyone. I still wish this were me and not you. I would still trade places with you in a heartbeat.

So, after I finished Yoga, Liz and I walked to Starbucks. We got a coffee and talked about everything from UFO’s (duh, they totally exist) to my sparkly nail polish that I am obsessed with. Oh, don’t worry….. it was just a nice peaceful stroll back to The Shores when we saw the smoke pouring out of one of the units. Not only was smoke pouring out, but flames as well. And not just any flames, but huge flames, out of the sliding glass doors and out to the balcony. One of the units had caught on fire. It was a big fire and everyone sat outside and watched, took pictures, and video taped it. The firefighters showed up but it seemed to take them forever. Liz and I just looked at each other and both asked what in the world is going on and that is when we decided that the world must be coming to an end. Bring it on. I’m totally fine with that.

Ronan. Somebody told me he thought you were too pure and good for this evil world. I sat with that for a while and I think I kind of agree. I don’t think such an ugly would like this would have known what to do with all of your wisdom, beauty, love, courage, strength, fearlessness, and the brains that you possessed. The world decided that you were too perfect so it had to take you back. I have schemed up so many theories about you and your life. It’s what I do at night while I sit her and think about you. Do I need a higher dose of this Ambien shit? I took it two hours ago and it’s almost 2 in the morning and nothing. Well, I hope it doesn’t have to do with the fact that I am drinking a COKE right now. My only vice in life really.

Not sleeping, mind is still racing. I don’t mind though. As long as your brothers are asleep, and my music is playing, cold Coke nearby, and you are here….. this is my heaven. Thanks for my perfect playlist on Pandora tonight. You have been playing the best songs. Everyone reminds me of you and some of them were our favorites. I hope you can still hear music. You loved it so much. I always play it twice as loud for you when I am running in hopes that you can hear it too.

Alright my little bug. Think I will cozy up with your brothers and try to get some sleep. I love you to the moon and back, Ro. Just you and me. Forever. Sweet dreams. I hope you are safe.

xoxo

 

Just say no to death do us part…….. time to update wedding vows people. What if your child died? Did you ever think about that while saying them???

Ro

Ronan. Hi my love. I hope you had a good day. That sounds so weird to say, because how could any day possibly be good when we are apart?? I miss your giggles so much. The world is so empty without them. I know I say this all the time, but I would give anything to have you back. I tell you all the time to please take me with you. I know you can’t, as you wouldn’t do that to your daddy or brothers but I miss you so much.

Today was a long day. The kind of days that I seem to have pretty often now that you are gone. I managed to keep Quinn busy though. We hung out at our place and then I took him and Olivia for lunch. We came back to the condo after and hung out. Olivia helped me clean everything as we needed to get ready for Liam and Papa Jim’s arrival. She is such a big help to me. Quinn looks up to her like a sister and she is a really good playmate for him. He gets lonely when she is gone as he loves having her around. I do too.

After we cleaned, we got ready and met up with Liz. The 4 of us walked and had sushi. It was a nice dinner but it always feels weird to be doing things without you. Between, Quinn, Olivia, and Liz, I was able to keep it together as they all provided much laughter. We walked around the island a bit and started making our way back to The Shores. As we were crossing the street, I looked up at locked eyes with a mama who was pushing her little boy in a stroller. I was dying inside because of her little boys amazing, curly, red hair. I smiled at her and she looked at me and goes, “Maya!” She approached me and introduced herself and gave me a warm hug. She follows this blog as does her sister whom I had the pleasure of meeting as well. We have mutual friends and the friends we are all friends with are GEMS….. so I know these two women must be as well:) We chatted for a few minutes and I managed to only get choked up once. It was so sweet, so rewarding, and it just felt good to hear them say that they think about you everyday. How I will never be without you because you live in each and every one of them. How you’ve inspired them to do something more with their lives. Nothing will ever be worth losing you for, Ro. But in losing you, people are finding what it truly means to live a life you are grateful for. Do I hate that it has to be you and me teaching this lesson? Absolutely. But we cannot control our fate, our destiny, what is being set out in front of us. It is not up to us so we have to just give in and trust that this is what our purpose in life is supposed to be. To help others see their way, to help them be more grateful and kind, to let them help us by raising awareness for you and Neuroblastoma or childhood cancer in general.

As I was talking to those two beautiful ladies today, I honestly felt you there by my side. It was weird. At one point, I looked down at my feet to see if you were there. That is how much I felt your presence. I then looked over at Liz and gave her a teary smile. Liz is my home, my heart, part of my soul. She gets it. She knew you were there today too….. I could tell just by looking at her. I was honored to meet both of you today and just wanted to tell you thank you again for loving and supporting strangers whom you didn’t even know, until today. I can’t wait to see you again.

After our “meeting random strangers,” whom I don’t know but they pretty much know everything about me…. which is weird but I’m oddly comfortable with it….. we went back to our condo. It as time to get ready to pick up Liam and Papa Jim at the airport. It’s been nice having some one on one time with Quinn. He’s really opened up to me and we had some pretty intense conversations. He is like a little sponge and never forgets anything I do or say. I got to watch him open back up to me again and he told me how hard it was on him to not have me around to take care of him when Ronan was sick. I told him I knew, and that it was hard on everybody. But we didn’t have a choice. We had to take care of Ronan the best we could and I’m sorry that I had to be away from him for so long. I hope he will forgive me. I would have done the same thing for him and I tell him this all the time. I just hope he really believes it. An 8 year olds mind is such a fragile thing when dealing with a tragedy. I don’t have all the answers and this is when the therapy will come into play when we get back. I recognize that we all will be needing it pretty intensely.

I was thinking about this the other night on one of my runs. For some reason I started thinking about wedding vows. The whole, “Until death do us part.” I couldn’t stop thinking about it and I thought to myself, I’ll bet when people say those vows, they don’t take into consideration if the child would be the one to die….. would death do them part?? I think people say that vow just thinking of one another, as man and wife; never a child because that is just too horrific and does not happen. WRONG. BIG FAT LIE. It happens. And I am so freaking glad Woody and I did not say those vows to each other. Not that they are awful…. but we are just different. We had E.J. Kotalik marry us because it was important to us to make them a part of our family. I never knew how much we would truly need them. We now need them more than ever. We didn’t read the traditional vows. We read a poem by E.E. Cummings, instead. One of my favorites:::::

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

It was perfect for us and still is. And whomever is telling my mom the statistics for people who divorce after the death of a child….. Seriously needs to stop. This is not something a grandmother who has just lost her grandson and who is worried sick about her daughter, needs to hear. I know the statistics, Woody knows them. We know who we are. We know that throughout all of this, we’ve stayed on the same page with pretty much everything. We know we are each others best friends. He has my heart and I have his. Forever. End of story. We don’t do drama, we don’t do hurt, we don’t do fighting (unless you count the time I threw a slurpie at his head) We do love. We love our twins. We love each other. We are not going to let cancer ruin anything else for us. MOTHERFUCKERCANCER. You’re not taking anything else away from me. You took the most precious thing that has ever been mine and I will fight you until you die and exist no more. YOU FUCKWAD.

Oye! Ronan! I’d better be signing off now. Before I get too bloody out of control! I love you my not spicy favorite monkey. I hope you are safe. I hope someone is taking good care of you. I just want you back here with me. Please. This life is too hard without you. I LOVE YOU TO THE MOON AND BACK RO.

xoxox

Fuck you fucking world

Ronan. I’d guess I’d better get used to these days of not knowing how I’m going to feel and what to expect. I guess I’d better, because yesterday was so hard, that today had no choice but to be better. The Frakes came over this morning to tell us goodbye as they had to head back to Phoenix. We were all sad to see them go; we loved having them here with us. After they left, we walked into town and had some breakfast. It turned out to be a sunny and nice day over here at the beach. Liam and Quinn were so anxious to get down to the beach with your cousins. We spent about 4 hours down there today. They had so much fun boogie boarding, playing in the sand, and running back and forth from the beach to the pool. I spent most of the day in the ocean, trying to surf. The waves were small today and they were breaking really close to shore. It was still nice to be out in the ocean, alone, thinking about you. I felt peaceful out there, a feeling that I never get to feel anymore. I guess I feel closer to you when I am closer to doing things more associated with the earth and this big world. Being in the ocean makes me feel vulnerable which in turn allows for my guard to come down and I have no choice but to sit back, open up my mind, and try to push away the pain to allow myself to feel something for you other than hurt and sadness. I like this surfing thing so I think I’ll stick with it. After our afternoon at the beach, we came back up to our place and got ready to head into town for dinner. Quinn was so cute and wanted to wear his “fancy Ronan” clothes to dinner. Little Fedora hat and all. It reminded us all of you so much. You loved the way I would dress you up in with your matching hat and clothes. The entire time we were at the pizza place, all I could think about was how much you would have gobbled up all of the pizza and loved it. It was strange sitting there without you. Too quiet and Liam and Quinn are too well behaved. I was missing your mischief so much tonight. Some kid at the table next to us was screaming and crying. It was music to my ears.

After we came home from dinner, we met up with your cousin, Layne, who is just a little bit older than Liam and Quinn. We met him in the grass with his mom and sister and they all came up to drop Layne off for a sleep over. After I got them settled, I headed out for a late run. I only did 4 miles, but it was fast. I sat after my run for a long time and talked to you and looked up at the stars. I kept going back to the last couple of days before you passed away. You weren’t really talking to me anymore, but I must have asked you 50 times, where you were going. I knew you were going away, and I wanted so badly to know where you were going. Every time you I would ask you this, you would yell at me that you were going “NOWHERE!” That brings me comfort now. It makes me think you didn’t really leave me, that you are still here, right beside me. I so wondered what was happening to your little mind, what things you were seeing, and all that unknown stuff scares me so badly still. I still get sick to my stomach when I think about you having to die, to go through all of that and I couldn’t go with you. I still can’t get over that you are not mine to take care of anymore. I promised you that we were going to get you all better, I promised you so many things, and now I am left with empty promises that I didn’t get to keep to you. I know this was all out of my control, but it doesn’t stop the guilt from taking over. Your dad and I used to have the conversation all the time about how we didn’t know what we would do if anything ever happened to you or your brothers. We would go over all the crazy things that could happen, like a car accident, one of you getting hit on your bike, getting kidnapped. We NEVER thought about one of you getting cancer. It was never even on our radar because in our world, that just didn’t happen to kids. We didn’t even choose to really look the other way about it, because we were so uneducated, that it just didn’t exist. And now look, Ro. You, the most precious gift to everyone in our family, are gone. Just like that. Poof. How can this be? Were you really mine? While I was sitting at the pool today, watching the 3o kids all run around, I actually thought this to myself in my head. Were your really real? How could I have had 3 such blissful years with you and then in a heartbeat, it was all taken away? What did I do in my life to deserve this? Was it because I cried when I found out that you were not a girl, but you were a boy at our ultrasound? I think about this all the time. How fucking stupid was I? After you were born though, the whole wanting a girl thing flew out the window. People would always ask if I wanted to try for a girl and my response was that I was so happy to have my 3 boys that I couldn’t picture it any other way. You three boys were the best thing to happen to me. Having 3 boys was a dream come true. I’m so lost without you, Ro. The last few days, I remember asking you what in the world I was going to do without you. I don’t think I’ll ever figure that out. Life is broken beyond repair. But somehow, I have to hang on to the little that we have left, not for myself because I could care less about me….. but for your brothers and your Daddy. They are all that matter now. I can survive living like I’m buried alive. This is the burden I will carry with me for the rest of my life and I will do it for you. You will forever be burned into my soul and I hope someday that the sadness will fade away just a bit and I will learn how to smile without it being so fake. Because of now, every smile that comes from my face is so forced and not real. I have to smile to keep the tears from falling and there is nothing natural about my smile now. It hides all the pain that I am feeling. I can put on an o.k. show to get me through the days, but it is exhausting.

Ronan. You should be here. All 3 boys are out in the livingroom now, chatting away and watching a movie. I cannot tell you how much having your cousins around this summer is saving us. Your brothers are enjoying them so much. It’s times like these when you find out how much family truly means. We are so blessed to have them all surrounding us. It worked out perfectly that they just happened to be here at the same time we are. We are so lucky to be so loved.

Do you know what else we did tonight? After we walked home from dinner, we went past the Hotel Del where your Daddy and I got married. Quinn took a picture of us in the exact spot where we said our wedding vows. Almost 10 years ago, Ro. Who would have known our happily ever after would have ended up with us having to watch one of our children die. FUCK YOU FUCKING WORLD. Why was somebody so pissed that we did have the perfect life, because we did. And I’m not ashamed to admit it because we worked hard to make it that way, although the perfect life did come easily to us. It was all based on being a good family who loved each other so much. A mom and dad who were best friends, 3 healthy boys, no drama, no stupid nonsense like drinking, drugs, lying, cheating….. we were just so happy and content with all of our little blessings. We were so content and felt so blessed. You know your dad would tell me every other day how lucky we were. We knew this, we embraced it, and we didn’t take it for granted. I’m so angry at how you were taken away from us and now we are left with all this pain and sadness. Complete bullshit. I know you know this. You, most of all, did not deserve any of this, Ronan. I love you and I miss you and I’m scared of the person I’m going to become without you. What if I can’t do this? What if this is all too much and I just end up pushing everyone away? Because as of now, I don’t like the person that I am. I’m ignoring all of my friends…. my best friend, and your Godmom, Tricia, included. Who does this? I do. Because I hurt so much that I don’t want anyone else to have to see me suffer. I would rather do this alone but I know that is not going to get me through this. I know this, but you know how stubborn I am. You were the same way, little man. I think I just need time. Time to be alone and grieve for you by myself. You lived inside of me for 9 months and after that you really didn’t leave my side for almost 4 years. Having you just gone, I feel like I am dead too. I just need some time to slowly come back to life and my independent self knows it is going to have to be on my terms. Guess it’s the Capricorn in me. I will let you help me though. When you know I am ready, I will be waiting for you. I’ll wait for you for eternity, my love.

That is all for tonight, sweet baby boy. Please don’t leave me. Please stay by my side. I need to know you are here. I need you to help me get through this because no one else can. I love you to the moon and back, Ro. Sweet dreams.

xoxo

P.S. To all you lovelies who came out last night. Thank you so much. My post was a little angry tonight, but only because of my heart that is broken into a million pieces. I cannot even describe to you how much I miss Ronan and how shattered our world is without him. I am so thankful for you all and how many of you that love us; please know that. I am so inspired by the event last night that I really want to turn it into a yearly thing. Next year, I know we can make it even more amazing although I heard from so many people how wonderful everything was. Next year, I will be strong enough to be there and I hope you can feel in my heart how beautiful I think you all are. Thank you again, a million times over. Ronan’s story has to continue on, our love story cannot end just because he is gone. It is because of all of you, that I know we can do this. His love, his beauty and his life will continue on because of all of you and the way I know his soul will be there guiding not only me, but you as well. Ronan had so much love, fire, and fight in his heart that I cannot wait to see what becomes of him and his story. Thank you all again. I love you so very much; even the people whom I don’t even know, but cannot wait to meet. Sweet dreams my dear friends. May your dreams be peaceful and full of love.

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo