Your bedtime song for the night, Ro. We are insanely obsessed with Florence.

 

 

http://youtu.be/mzMcNAe4nE8

This is dedicated to all the haters. No RoLove for you tonight. Douchebags!!

http://youtu.be/sv3tadz5Q3o

I would just like to say to one little blog reader in particular tonight that if I am a train wreck, then you’d better watch the fuck out because I am about to run you the fuck over. But I hope you have a nice night hanging out with your 145 cats while you star on the show, “Hoarders,” and hide behind your book of  “imaginary shit that does not exist.”

I will not be posting your comments. They will be going in the trash, where they belong.

xoxo

And a little P. to the fucking S. I love Tom Selleck a.k.a Magnum P.I. It could possibly be one of the best shows, EVER. Along with Murder She Wrote and The Golden Girls. That was for you, Rita. Just some of those random little things that I am throwing out into this world.

Maya decides not to die.

Ronan. I saw your Dr. JoRo today. It’s been way too long. It was a catch up session and a pow wow session combined. She wanted to know what’s been going on, if I’ve had quiet time, how I’m feeling, etc….. I told her today that I think I have decided that I’m not going to kill myself. She hardly flinched when I told her this as I think she already knows this. I guess I’ve known this for a while too….. but sometimes I think it would be nice to take the easy way out, so I wouldn’t have to deal with any of this pain. I get tired of it. But then I think of your face and how unfair that would be to you…. not to mention your daddy and brothers. And Dr. JoRo and Sparkly. And a whole lot of other people who love me. I could never be so selfish to actually do something like that. But I do think about it. Not a lot, but it does comes up. I’ll bet you it comes up with any parent who has lost a child. I’ll bet it is just part of this process. It almost seems natural due to being left here, expected to survive such extreme circumstances while everyone else goes on with their day-to-day lives. I won’t ever be able to go back to the day-to-day normal life that existed before all of this. Every single thing I do involves thinking about you, missing you, and hurting for you. Whether it be folding the laundry or how I am plotting to take over this world with my evil plans that often involve the fuck word that I love so much and seems to offend so many people. Bahahahahaha!!! That was my best, evil laugh. Fucking fuck little dude. People are sick and want to see me fail. I fully get that. It’s just the way this world works. I don’t have much to say to that because it’s not really worth my words. I just feel sorry for them and the things in life that they choose to HIDE behind. What a pitiful life. All I’m trying to do here is spread the RoLove and maybe help save some cancer babes lives while I’m at it. But I understand how that could seem so evil as I am not doing this the traditional route. I’m choosing to do this my way or the highway and anybody who has a problem with that can SUCK IT MOTHER FUCKERS!!!!!!!! Traditional is not my style when it comes to, “Oh, I’m sorry, but my son died of cancer so let’s just sit back and be nice about it while I shut the fuck up and don’t be vocal about it so things don’t ever change.” Gag me.

People are scared of different. They would rather sit back and judge and hide instead. Uhhhh…… hate to break it to ya, but nobody normal, ever really changed the world. It’s always the rule breakers, the outside of the box thinkers, the passionate ones, the one’s who don’t take NO for an answer, the one’s who FIGHT back not slink away, the “crazy,” ones. It’s not the let’s play it safe guys and do everything the same exact way, that everyone else is doing, or let’s just not do anything at all. That won’t change a thing. I’m not here to follow anyone’s else’s lead, unless you are a rule breaker too, then we can talk. I’m here to listen. I’m here to be inspired. I’m here to watch the way some other very inspiring people are doing things differently in life. I’m here to grab onto the hands of the people who are willing to do things differently as well. It will take an army to change things, I know this which is why I am sitting back and quietly observing a lot. It’s as if I’m seeing a whole new world of people out there. They are so beautiful that it’s blinding. In a good way. It’s feels so good to be blinded by the sparkling lights of the human soul.

Do you wanna know one of the sparkling lights that I am blinded by every single day? So much so that she is in my daily thoughts because I love her that much. My Dr. JoRo. In my dream of all dreams, and I have many, she is in each one of them. I would walk through fire for her. If money were no object, I would give childhood cancer funding and her MISS Foundation, everything I had. The fact that she has to work so hard, for the funding she gets, which is not a lot for all she does, is such bullshit. Everyone should be supporting her. She is saving the lives of all these parents in the world who are just tossed out into the streets, so scared and vulnerable. She is fighting the good fight and how in the world isn’t EVERYBODY supporting her? She is not doing this to make money or line her pockets like so many other organizations out there. Ummm, hello…. Dr. JoRo does not even take a salary from the MISS Foundation. She is THAT kind of a human being. She is an anomaly in this world. She could give a flying fuck about making money for herself. She wants to help others and that’s it. There is no hidden agenda. What you see is what you get and what you get. And what you get is one of the SMARTEST, KINDEST, PASSIONATE and BADASS souls that I swear to you Ro, has ever existed. She is my Gandhi. I need you to watch over her. I need her to be here with me for a very long time because we have a lot of work to do, together. I know Chey is watching over everything she does so she really is in the best hands possible; but I know you are helping out now too. I know you are the one who led me to her. Yes, I got your little sign. The JoRo sign. It’s not a coincidence that her middle name is ROse, baby. I know that. Thank you.

I not only go into Dr. JoRo’s office to talk about death, grief and all things painful. We also talk a lot about life things, which was probably one of her biggest clues that I had decided not to off myself. I guess when you are talking about the future, it means you are less likely to kill yourself. At least in my case. I’m not the grief expert or anything, but this would seem to make sense. Today, I went in there and we discussed an email I had shared with her that I had written out. Today, I went in there with “I have an idea. A really, really big idea….” I have a lot of these ideas in my head that I am so excited about, I want to scream them from the rooftops and go jumping right in, but I understand it is easier said then done. In my mind, everyone should just hear my ideas and say, “Yes! You are a genius! Here is your 100 million dollars! Let’s start saving all these cancer babes!” Dr. JoRo quickly brought me back to reality in the most tender, caring way. By saying, “I absolutely think you can get this done, but let’s cross off X,Y, and Z to get there first and I will help you. This has to be a really well, thought out plan. So, let’s sit down with this dream of yours and figure out what it is we need to do, to make it happen.”

I like a plan. A plan says your serious. And I am serious in the most serious way possible; with everything I have. With everything that is you. But I understand there has to be logic, rules and structure in place as well. I can play by the rules with some things, but I will keep it extra spicy for you too of course just to put your little spin on things. Lots of big dreams all inspired by you and all the other kids and families we’ve been touched by. Cancer peeps and non cancer peeps. It’s amazing to see the movement you are creating.

There is no dream that is big enough for you, Ronan. I promise you that. I promise you, we will get this done. This is what you want. I know it. I love you. I miss you. I hope you are safe. I’m going to try to get some sleep. My new motto is, “I’ll sleep when I’m dead.” I said this to your favorite lovie the other night. He didn’t laugh. He didn’t like it. He thinks I need my sleep. I will try to listen to that voice of reason of his that seems to be the one I listen to. And yours. Although, I feel like yours is always pushing me not to listen and to break the rules. You are so spicy. G’nite baby doll. I love you to the moon and back. G’nite little RoFriends. You are the best for believing in us and for letting Ro make you better people. I love you.

xoxo

You should still be here doing this and it is bullshit that you are not.

http://youtu.be/REi_g2eo27I

Happy Birthday, Johnny and I love you, Ro.

 

Ro baby. I have a lot to say tonight, but Liam is not feeling well so I need to take care of him. I found some videos of you. I watched them. I cried. You have some crazy good dance moves. I love you. I miss you. I hope you are safe and rocking out with Johnny Cash tonight, since it is his birthday. I’ve gotta take care of Liam now. I miss taking care of you so much. G’night baby boy. I love you to the moon and back.

xoxo

Your song for tonight, Ro baby. Because we heart Neil.

 

 

http://youtu.be/gonu45ZNHpM

 

Thinking of you, Jen and sending lots of RoLove your way tomorrow and always.

http://goawaybraincancer.com/2012/02/26/the-sharp-knife-of-a-short-life/

In the words of Eddie Vedder…. I’m still alive. But do I deserve to be? Is that the question? If so, who answers…. who answers??

 

 

Ronan. I feel like I have run a marathon. I am emotionally beat, but my mind refuses to be still. I need you here. I need to tuck you in, to kiss you goodnight, to tell you I love you and to hear you tell me you love me back. I miss you so much that sometimes I think this pain might really kill me. I’m not that lucky because it never does. I just continue to feel like I am being stabbed over and over again. It is an endless, vicious cycle of pain and misery. It hurts to even breathe. But I’ve been productive. I spent the weekend, throwing myself into work for your foundation. I have so many ideas. I have come up with a new dream and vision. It’s HUGE. I think it’s slowly been in the back of my mind but it just become clear to me a few days ago, what it is that I think needs to be done. Not very many people know about it. I’ve only told a few as I think I need to keep this one to myself for a while, until I can get a handle on how this plan of mine, can actually become a reality. It could change so many things. It could help so many people. It’s just one of my dreams for this disease, just one of my many ideas. I’ve obsessed over it for days now. But it’s like slowly putting a puzzle into place. The pieces have to fit just right and it is not something that can be rushed. It has to be done just right, so eventually all the pieces will fit into place. It’s time to start working on the pieces baby. One by one.

So, I may be out of control with our little Taco place. I spent 3 days in a row there. 1 lunch, 1 dinner, and one very productive foundation work day. Turns out, you can hijack the wi-fi from the big restaurant across the street. SCORE for Team Ronan! I’m going to have to start up a Taco/Mexican Coke fund. I spent last night there with your fairy RoMo and Margarita. It was kind of a last-minute thing from your RoMo as she was like, “Hey, I’m thinking of changing my flight to stay an extra day!” My response was please do so, that way we can go and have more chips and salsa. So we did and I hijacked Margarita to come along with me. BEST NIGHT EVER. Is it bad, that my best nights ever now revolve around everything you?? Because to me, it means the world to me the way I get to sit around and throw out these ideas to people who care so much that they will give up their Saturday night to figure out what it is that we need to do to make these really, really great things happen?? Do you know what I was told last night?? That the word no, was not acceptable. That there is always a way to work around things to make things happen. I LOVE that. I need less no’s and more let’s find a way to fucking do this! Because so much needs to be done in a big way for pediatric cancer, to change things. Last night was so inspiring, so powerful, so moving. At one point, your RoMo just looked at me and goes, “I can’t explain this, Maya, because there is no explaining it. Ronan is changing everything. There is a shift and a movement happening. No other “sick,” child has had an effect on people like this.” I just quietly listened and told her I knew. We all know that this is beyond something bigger than us. I know that this is all due to you, your beauty our love, and your wild and free ways. It is too beautiful to try to explain with words. Let’s explain them with the huge things we are going to do in this world instead. We’ve got a pretty kick ass list of names that we are going to try to recruit to help us. It’s time for this world of ignoring childhood cancer, to change. Enough is enough. You should not have died. Let’s try to help other little one’s so that one day, they won’t have to either. I don’t think that’s too big of a job, do you? I know you don’t, otherwise you would not be pushing me forward to do this.

Today, I went back to our little Taco Shop with my imaginary board member that does not exist. We sat, went over the huge to do list. She gave up her Sunday, for me, for you, for us. What do I even say to that? Nothing. Because she does not want the huge fuss made about her, that I want to make. She just wants to be behind the scenes, helping us out in her quiet Wizard of Oz way. She is the freaking Wizard of Oz in a way that leaves me speechless. Speechless but tearful and thankful. Thanks, you know who you freaking are. Thanks for everything but most of all for looking at me today and going, “We can do this. This is easy.” Thanks for believing in me and Ro. Thanks for being just a kind-hearted, secret badass chick in general. You are quite simply, are RoMazing:) Oh, and little LoRo…. my other little amazing dolly who has worked so hard on the RoLove that she is creating….. I need to tell you thank you tonight. For not being a normal, 17-year-old girl. For being different in such a way that you have set the bar so high, for other girls your age. Your heart and the love that you have for Ronan and all these other cancer babes, is so beautiful and you are such a gem. Thank you for all of your hard work and love. I’m so thankful for you.

Alright, my spicy little monkey. It’s kind of late. My eyes are burning and I think I have to try to sleep. Not just for a few hours. Please. I just want some normal sleep. Not sleep which now seems to come in the form of fall asleep for a couple of hours and wake up to Ronan is dead. Ronan is gone. Nothing in the world is right so screaming voices take over in my head, instead. I’m sleeping in your bed tonight. Maybe this will help. It seemed to be working for a while. I hope it will work, tonight. I love you. I’m sorry. I miss you so much. I hope you are safe. G’night baby doll.

I have an idea on how save Liam and Quinn’s childhood. Just bring Ronan back!

Ronan. I had a whole big post written out last night and I don’t know what I did, but poof! It disappeared and I could not recover it. Dang it! It was a good one too. I’m going to write a new little post as it’s early in the morning and I can’t sleep. I’ll tell you about yesterday. About how in this new life, how something as simple as being around certain people, makes me feel closer to you. How being around certain people, make me feel happy and it’s not anything I can explain. Your Fairy RoMother is in town and I got to spend much of the day with her yesterday. I hijacked her and took her to one of your favorite restaurants were we gorged ourselves on chips, salsa, tacos, mexican cokes for a couple of hours while we continued our evil plot to take over the world. Or at least the kids are dying/getting cancer and nobody gives a fuck world. We sat outside, enjoyed the warm breezy weather and to get caught up on all the little life things that have gone on. Your favorite lovie stopped by. I had told him a couple of days prior that Kath was coming into town and if he wanted to meet one of the most amazing souls on the planet, now was his chance. He jumped at the opportunity and stopped by just to meet her. It was so sweet. It could have been one of my top 5 favorite days ever, since losing you just due to the company alone. After we had way too many tacos, chips and salsa, we returned back to our house where your Fairly RoMother had the chance to say hello to your daddy and meet your brothers. I was so happy she was able to meet them and see your daddy. It made for a pretty perfect ending to a pretty perfect day.

I spent the rest of the evening doing what I normally do. I waited for the sun to go down before I slipped out for a run. You should have heard the things going on in my head last night while I was getting ready for my run. “Oh, you can’t go yet…. it’s still a little light outside. It’s still too bright.” What the hell is wrong with me? It’s as if I truly think I am a part of the Cullen Family from the Twilight movie and if I go out into the sun, bad things will happen. Sometimes I truly do feel if I spent too much time outside in this bright world, that I am going to explode. Do you know there is an official phobia of this? Fear of the sun? There is. It’s called Hellenologophobia and I think I have it. I think I have it and I live in Arizona. Lovely. After I returned from my dark run of the night, I spent the rest of the evening with your brothers while your daddy slipped out for a few hours. I cuddled up with those brothers of yours and watched a movie. We all fell asleep in our bed. I fell asleep for about 2 hours, Quinn fell asleep in bed next to me, and Liam was cuddled up in the bed I had made for him on the floor. He likes to sleep in our room a lot now and we are o.k. with this. It’s comforting to your brothers, so sometimes we have big slumber parties in our room. Your brothers love this and I’m going to embrace this for as long as possible because I know it won’t last forever.

So, I knew this was going to happen when I wrote my last little blog post and said something about telling Quinn he was not allowed to complain about stupid shorts, because Ben died and we are not allowed to complain about silly things in life anymore. I knew I was opening Pandora’s box with this little tid bit. It’s amazing, what people just assume due to reading what I write. It’s amazing how people are so quick to judge and put such hurtful things out there with their opinions/advice/words. I got a lot of, “It is not Liam and Quinn’s job to change the world! Stop putting so much pressure on them! Let them be kids! Save them from this evil life you are creating!” I would just like to say this. Dear OUTSIDE READERS WHO JUDGE AND DO NOT TRULY KNOW OUR FAMILY, shut it. It is NOT your place to come in here and judge my parenting skills. My parenting skills are not up for negotiations or up on the chopping block. I am a good mom. Despite how harsh the words I write on here sometimes seem to be, it is only because I am THAT hard on myself. I am a good mom. Woody is the BEST dad. And Liam and Quinn are the most amazing little boys, even after going through something like this. Do we live our life differently from most families? I have no clue, because I don’t sit around comparing ourselves to others. I know how we do things, how we have always done things, and it is not much different now, then before losing Ronan. We have always been very open about everything that is going on. We don’t hide things. We expect a lot from Liam and Quinn, while letting them be kids. They have always been aware of the sadness that exists in the world. They have always been aware of the pain that exists. I think I’ve said this before, but I had to stop watching the nightly news in front of Quinn at the age of 2 and a half because he would become so concerned with what was going on, why people would hurt others, and he would always want to know how he could fix them. I don’t know if it is a nature or nurture thing with Liam and Quinn, but they are both two of the most compassionate/wise souls I have ever known. Ronan was this way too. I don’t know why or how, but I am sure the way we live our lives has a lot to do with it too. By being super open, honest, loving and kind. So, sending them off to school with “Ben died so stop complaining,” may seem shocking to some, but it’s not to us. Their baby brother died. With this comes the lesson that EVERY SINGLE DAY is precious. And we are not going to waste it by complaining by silly things that just do not matter, when there are real problems in the world to complain about. It was just me, having a pure, honest moment with my boys. They both know about Ben. We have talked about it in-depth and we do not make death a scary thing that hangs over our heads in our house. We don’t obsess over it. We don’t dwell on it. We are teaching our boys that yes, this awful thing happened, but we are a strong family and Ronan would be so proud of us for continuing to live life by being happy and being a family. I don’t think I’ve ever said I need Liam or Quinn to change the world. That’s what I have Ronan for. I don’t ever think I’ve said that Liam and Quinn will spend the rest of their lives, going on this cancer crusade with me. This is my job, not anyone else’s. I don’t care what they do, as long as they are kind to others and do whatever it is, that THEY CHOOSE to do, they do it with passion and by trying their hardest. I don’t think this is such a bad thing to expect. I do not think my little boys, feel like Ronan is this bigger person, who they live in the shadow of because he is that HOLY and MIGHTY. He was their little brother. He died. We are all sad about that but in no way, shape or form would we hold that over our twins’ heads. Do you know how I send my twins off to school, everyday when I drop them off? I tell them this. “Please try your hardest today. Please help others. Please be kind. But don’t take any crap from anyone. I love you. Have the best day ever.” This is our motto in our family: Be kind but don’t take anyone’s shit. Stand up for yourself but don’t hurt others. Help others when you are in a position to do so. Be strong and brave and try your hardest. Do your best. Make mistakes. Learn from them. Be proud of who you are. It’s pretty simple stuff, really. There is no need for the opinions and advice from outsiders on this subject. I have Woody who is my insane voice of reason. He walks on water and the fact that he told our boys the other night, “Your mom is going to change the world, we are so lucky to have her,” is all the reassurance that I need. Woody believes in me. Liam and Quinn believe in me. They support me. I support them. We support each other. They all bring me back to reality when I am beating myself up which I do a lot of. They remind me that I am doing alright. The proof is in the pudding. Liam and Quinn are excelling at everything they are doing. Grades, school, sports, and just being kids like every 8-year-old should get to be. They just now get to be 8 year olds, who lost their little brother, but it will never define them. It will never be who they are, but it will always be a part of them. So, that’s my rant for the morning. And I think I even did it without saying the fuck word which is just not right. So fucking fuck. Liam and Quinn are just fine. But if you want to “save them,” just bring Ronan back. I mean really, that’s all it would take. If you can’t do that, then shut it. Mind your own business and stop judging me by words that you read. It’s not o.k. to just assume things and put your own experiences on other people’s lives. If I were off shooting heroin, drinking myself into a black hole, then maybe it would be o.k. to say your peace. But I’m not. Not even close. I am at home, every single night with my family. I use this blog as my outlet to say things that I feel and to vent because I hold so much back during the day when I am in mommy/wife/responsiblity world. These are my words and if you don’t like them, that is your problem. Do not try to make it mine.

That’s all for this morning little bug. I miss you and I am trying everyday to figure this new life out. It is sad, scary, dark and not fun. But the glimpses of light that shine through every once in awhile make me smile. They remind me that you would want me to keep going, to keep trying, to keep living. As painful as it is at times, I know I don’t have a choice. I will not waste my life and give up. I live for you. I love you. I miss you. I hope you are safe.

xoxo

I’m not one to follow the crowd…. but I was told all the cool kids are doing it;) These are some really cool kids that are voting for me!

http://www.circleofmoms.com/blogger/rockstar-ronan?blogroll_id=49

  • Instagram is my BFF

    Good Morning from Sedona! #poppy #ronan #fucancer #poppyroo #sedona #poppyhasanewbestie #francis @jcaccia Sweet dreams, little ones. #poppy #ronan #fucancer #thisroomisrad #sedona #nightynight Had to bring along this babe, too. Poppy's sissy. Can't leave home without her. @knjoy #poppy #ronan #fucancer #poppyroo #slumbersissys #sedona #nightynight
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