Sometimes it takes the hardest fall, to know where you really stand

Ro baby. I’m back home. In your home where you should be but are not. It was strange to leave NYC without you only to wind up back at our house, without you. Your brothers were sound asleep as it was late when I got in. I went into their room and gave them a million kisses. I was thankful to have them to come home to. I woke up this morning to hearing your brothers get up and in the shower; all by themselves. I didn’t even have to wake them. They are getting so big and responsible. They are so much more responsible than most 8-year-old boys. I guess that comes with the hard lessons they have had to learn. When I came home last night, I saw a laminated poster that Liam had made for school that your daddy had helped him with. It was full of pictures of all things Liam. Along with the things about him such as his favorite place, food, thing to do, etc….. I read the words, “If I had one wish it would be _________. He had filled in the blank with, “unlimited wishes.” I looked at your daddy and I could feel the tears start to sting my eyes. I said to him, “Wait. He didn’t wish for Ronan back? Why wouldn’t he have wished for Ronan back?” Your daddy said he had asked Liam that question too. Liam simply replied that he would wish for that second, after he got his unlimited wishes. For a split second, my heart was broken over Liam’s answer but then I remembered how he is just 8 years old. How I know that he wishes for you back, everyday. But what kid wants to go to school and tell their entire class that they wish that their baby brother, who died of cancer, to come back? What 8-year-old, wants to explain that to their entire class? To me, that was even more heartbreaking. After my split second punch in the gut that I literally felt, it went away quickly and I thought to myself, “What a smart little kid.” I know how badly losing you has scarred your brothers for life. I am watching them, slowly learn how to live without you. And I can tell you everything they do is with 110 percent more effort, fire and passion. They are the best little boys in every way possible. I am so lucky, Ro. I am so proud of them.

I spent today with Dr. JoRo. We talked all about New York and how good it was for me. She is so glad I fought for that trip. I am glad too. I listened to myself tell her things that I never thought I’d hear myself say again like I feel hopeful and inspired. That I feel like I am starting to believe in myself just a bit. She had me fill out a few questionnaires that apparently, I had filled out when I first came to see her. I told her I didn’t remember filling out a thing. I stared at her questionnaire like I was seeing it for the first time. She assured me that I had filled it out before and she watched me as I checked the boxes off one by one, once again. She compared my answers to the one’s I had answered only a few months after losing you. My numbers were really high on her scale as far as PTSD and some other things go. My numbers are a little lower now. She talked about how she would never say I’m getting better because you don’t get better with something like this. But she did tell me I’m learning to cope with things a little more. I’m learning to slowly come back to life, one piece at a time. I guess this is progress. I told her she had given me this test at the wrong time….. straight from coming back from a NYC trip. I told her to give it to me next week, after reality came crashing down again. She laughed and said she would.

I forgot to tell you a totally funny story that happened on my last day in New York. I was out for my Central Park run and I had stopped at mile 4 and sent Katherine some really pretty sunny NYC picture along with some words about how lame this extra safe, Central Park daylight run was. She replied back with something even more clever and brilliant than my smart ass comment. I continued on my extra safe stupid this is not dangerous enough for me run, laughing at her words. I was a few miles back into my run and I guess I was running pretty fast, but I was totally zoned out. All of a sudden, I tripped on something and felt myself go flying through the air. And I’m not talking the kind of flying where you end up on your ass. I’m talking the kind of flying that it’s like you are running to home plate in a baseball game and go sliding in head first to score a run. Oh YEAH. That was totally me. Except I was not on a baseball field. I was on hard, black pavement. I picked myself up quickly and totally just started running again like nothing had happened. My hands, clothes, and body told a different story. My hands and clothes were covered in the black NYC streets, I had blood and asphalt, engraved into my skin, and I could feel the huge bruise on my thigh getting bigger by the second. I finished my run, in fits of giggles though, so wishing somebody would have caught my totally awesome fall on tape. I texted Kath and told her that it turns out, running in Central Park in the middle of the day, CAN be dangerous. I could be on to something here and I have the asphalt tattoos to prove it. I’ve scrubbed for 2 days now and my hands are still black. I told you NYC didn’t want me to leave. Or at least it wanted to send me off back to Phoenix with the reminder that no matter how hard I fall in life, I’m the only one that can pick my sorry little ass back up. Nobody else, Ro. There was nobody there to save me or help me when I fell yesterday. And even if there would have been, my stubborn self would not have taken their hand. Because deep down, I know that it is going to take a lot of falls, bruises and bloodied hands to get through this. I know that I am the only one that is capable of fixing my owies, as you used to call them. You are so worth each and every one or them, Ro. I love you so much.

I’m tired baby. I spent the rest of tonight doing all the things that I should be doing like helping your brothers with their homework and playing football outside with them. I missed you every single second. I love you to the moon and back. I hope you are safe. G’nite, little one. Sweet dreams.

xoxo

Back to a reality I don’t want

Ronan. I am not content to go back to my old life, before you disappeared. The safe little life of an Arizona housewife. Thinking of going back to my life, before all of this, makes my skin crawl. Nothing will be the same again without you. That means everything has to change. I’m not sure what exactly that means yet but there now lives this fire in me that cannot be tamed. I died when you died. I say that all the time. I will never be the same person that I was, before all of this. I’m not sure I even liked that person. Well, I guess that’s not true. Sometimes I tend to be too hard on myself. I did like the person I was before all of this and I should stop and pat myself on my back every once in a while. I know I was a good person but being a good person will only get you so far in life. It can’t fucking cure cancer or save our troops. But I was doing a really good job at that life or so I thought because my life revolved around the love I had for our family and look at what that accomplished. I got 3 amazing little human being boys out of it. Including you. And you were totally the raddest kid that ever lived. At least in my eyes and that was enough for me. But looking back, I do see a person who had settled because everything was so safe and sound. Just the way I had always wanted my life to be. Coming from a childhood that was really unstable…. I swore to myself when I got married and had kids, I would never make them endure the things I had to. I met your daddy, had you boys and got very comfortable living inside of our little bubble. I just never thought the bubble would burst in the worst way possible. By one of my kids dying. I was the lucky one with an amazing husband and 3 beautiful boys. I so knew it was all too good to be true and it was only a matter of time before something happened. I just always imagined it would be something like getting breast cancer or your daddy getting prostate cancer because those are the things you hear about in the world. You don’t hear about babies being diagnosed with cancer. It’s the biggest dirty little secret out there. It’s a secret that nobody wants to talk about, even when it happens to them. It is the dirty little secret, that people just want to ignore. I hate to be the fucking cancer grim reappear here, but if I were reading this, and I had not lost a child from cancer….. I would be so fucking scared. I would be so scared that this could happen to me that I would have no choice but to take that fear and channel it into helping to be a part to change the face of this disease. Because as we know, kids can get cancer at any age of life…. even teenagers. I think about this all the time. What if I did not choose to speak up about this and Roforbid, Liam or Quinn ended up developing childhood cancer later in their life. And I had watched you die from it, but did nothing about it which in turn, resulted in the same awful treatment/statistics/outcome for Liam or Quinn. Could you even fucking imagine? That would be so unacceptable. All of this is unacceptable. You dying is fucking unacceptable. And not speaking up about this is totally unacceptable here to help be a change in this so that someday, this does not have to happen to another child and another family. I know I don’t have a choice unless I just choose to throw in the towel and slit my own writs. And trust me, I’ve come pretty close to the edge Ronan. I still think about it all the time. But what good would that do anyone? It wouldn’t. So, I’ll sit here and fight instead. I’ll continue to fight for you little man until you tell me, enough.

The more I’m learning about childhood cancer, the more pissed I am getting. Why is it, that our children are getting the short end of the stick? I know any parent out there would agree that if they had to choose between themselves getting cancer or their child getting cancer, they would choose themselves. And if you choose your child, then you should not be a fucking parent. Or if you can answer this question and you are not yet a parent, but want to be a parent someday…. and you choose your child getting cancer over you…. you need to reconsider having a child. So, if we are all in agreement that we would rather have this happen to us, then our child or future children, why in the world is pediatric cancer the LEAST FUCKING FUNDED??? Because of lack of awareness. Plain and simple. If people everywhere, were aware….. things would be so different.

It’s been a lot of work being here. Not emotionally, because emotionally I feel stronger then I have since losing you. It’s been a lot of cancer/foundation busy work. I’ve been working my ass off, leaving the apartment at 7 a.m. and not returning home until really late at night. I wish I could say I’ve been living the high life of an awesome 30somthing New Yorker. Hardly. I’ve been eating, drinking, and sleeping everything childhood cancer related. I met with Dr. Mosse yesterday. She was kind enough to let me eat up much of her afternoon. It was strange seeing her but in the best way possible. I don’t want to go into too much detail about what went on, but to me that woman walks on water. I could sit and give you the run down on our 3 hour conversation about cancer, but it was so much more then that. It was a conversation full of more then science and statistics and to me, that meant the world. I knew it from the first time I met her when I watched the way you easily slid into her arms when she went to pick you up and exam you on her table. The words I sent to Fernanda after meeting Dr. Mosse for the first time, in the middle of your treatment will haunt me for the rest of my life. Before we left CHOP, you were running ahead of me with your daddy. I sent Fernanda a text that simply said, “It’s her. She’s going to save my son.” But then you know, we got “sold,” on Sloan. Your daddy swears the outcome would have been the same no matter which way we went because your disease was that bad. All I know is if that is the case, I would have rather had you in Dr. Mosse’s care then Dr. Kushners. I will never forgive myself for not listening to what my HEART told me. I ignored it and that was so wrong of me. So Ro… what’s the lesson in all of this? I think it is this: Dr. Mosse couldn’t save you, but she is going to save other kids who are in your same position. And even if she can’t right now, because this disease is so hard to figure out, at least she will do everything she can and she will do it with compassion, grace and dignity. I will support her. She owns a piece of my heart. The tiny piece that I have left. I don’t want to say never…. but as of now, Sloan Kettering and Dr. Kushner will never get support from us. Unless he makes some serious changes. I straight told Dr. Mosse yesterday that if I ever saw Dr. Kushner again, that I would kick him in the balls. I know, so appropriate of me but I know she understands. I’ll bet she’s never had a parent tell her that before. I so love being such a rule breaker. The other lesson here, Ro. Is to always listen to your heart. I am a huge believer in this. Even if things don’t turn out as you’d hoped or planned, knowing that you stayed true to yourself is something that you can never regret.

After I got home from Philly, I met up with a lovely little blog reader of mine who actually volunteered at Sloan while you were being treated there, Ro. I never met her, but she remembered you and your daddy and the way you ran around the halls of Sloan with your gun like you owned the place. Rachel has been a huge lover of yours and so when she heard I was coming to NYC she told me she would love to meet up with me. She got in touch with me a few days ago and we decided to meet up last night even though I was beat from the day I had with Dr. Mosse. I am SO glad I didn’t just go home after getting off of the train. Rachel met me at Penn Station and we headed out to grab some food as I was starving from not having eaten all day. We got to know each other over sushi and I fell head over heels in love with this 21 year old student who goes to NYC. She wants to be a pediatric oncologist and has so much heart and passion. She is funny, quick witted, caring and she put my crazy skydiving ways to SHAME! Talk about being fearless. The girl cliff dives, for breakfast. We spent the next 4 hours or so, hanging out like and I felt like she was my long lost little sissy. Although at one point I was reminded of what a mom I am because I said to Rachel, “Text me when you get home, so I know you made it safely.” She laughed and said, “You are such a mom.” I smiled and said I knew. I can’t wait to see her again. I am so impressed with the drive and heart of this amazing girl. I know what I was up to when I was 21 and it wasn’t trying to save a bunch of babies with cancer. She reminds me of a mini Dr. Mosse. Rachel actually shadowed Dr. Mosse for 3 weeks and was able to back up every good thing I had to say about her. Another little piece of the puzzle that is falling into place, right baby. I don’t believe in much in life anymore but I do believe in signs. And I have been seeing so many of them. All from you.

Today, I went over to meet up with Scott from Solving Kids Cancer. I feel like I am on the right path as far as educating myself on anything and everything that is childhood cancer related. I’m doing the best I can with my grief brain that still exists. There are so many pieces of the puzzle to consider and I have to make sure I am stepping back and looking at the bigger picture here while examining all the small details as well. As I have said before, I am not here to raise 100K for childhood cancer I am here to raise 100 million dollars or more. And I will not be flying in a private plane with it. I am here to do some serious damage. The world of pediatric cancer is not Vegas people; but the world seems to think that it is acceptable to gamble with your child’s life like it is. So all these parents are forced to gamble and the sad truth is, everyone loses in one way or another. When your child dies, not only does a parent lose…. every single person around loses. The loss of a child is so much more heartbreaking then losing a parent, aunt, uncle, grandparent, and don’t even get me started on the dog or the cats of the fucking world. Losing a child is the deepest pain that one can ever experience. It goes against the nature of everything that we know to be true. Turns out life is one big fat fucking lie and everyone is eating it up like it is free ice cream day at Hagen Dauz. I’m so full of this “life,” bullshit that I will continue to throw up everywhere until people stop gorging themselves to death and decide to wake the fuck up and actually make a difference in this society and this world. Has anybody taken a look around lately? Does anybody care that there is a fucking war going on and it’s not just in Iraq. There is so much more to worry about in life then missing an episode of your favorite television show.

Ro baby doll. I’m on a plane back to AZ. This trip was more then I could have even dreamed of. I found so many things here that I thought were lost forever. The biggest part of my trip was feeling like I found a bit myself again and feeling the strength that I know I have because of you. Turns out the time alone was much more needed then I realized. I’m an introvert by nature and I’ve always embraced this. New York City and the introvert Maya do really, really well together. New York City, is my heaven. I smiled so much on this trip and I smiled over the simplest things. Things like opening up my blinds and seeing the dark angry sky pouring buckets of rain on the sidewalks below. I didn’t even have to force that smile, Ro. It just happened. It felt so strange yet so good. It’s hard to live a life where more fake smiles exist then real ones. I came on this NYC trip with no expectations and I can tell you, my faith in humanity has been restored. How due to the kindness of some really generous people, I was reminded that there are a whole lot of people, that believe in me and no matter how important they are in this world…. they don’t need to take the time to scream it from the rooftops. They don’t need the recognition of what it is they are doing, which is helping others in their day to day lives. They don’t need their name splattered all over a magazine cover or in the papers. They just make things happen and do kind things because they are in a position to do so and that’s it. Those are the BEST kind of people in the world, Ronan. The one’s who do because they can. The one’s who are grateful for all that they have so they live their lives, quietly giving back to others when they are in a position to do so. I know these people know who they are in my life and I hope they know that they truly do make the world a better place. I am honored and so grateful for the quiet important people in the world. Especially the few quiet people of New York City who helped to save a bit of my sanity by being so generous with their time, smiles, lives, love, ears, and living spaces;) Thank you my little NYC lovelies. You all SAVED me.
I love you Ronan. I will never be better from losing you. This reality still takes my breath away. I’ve just got to keep on holding on to whatever it is that I have left. I have to keep moving forward for you. I keep telling myself you have a bigger plan for me, for you, for us. I’m just going to continue to follow my heart and listening to you. You will forever be my greatest teacher in life. I am so thankful for that. Sweet dreams little one. I love you so much. I hope you are safe. G’nite baby doll.
xoxo

Oh and P.S. Dear Assholes of the world who continue to talk about my language on here. I feel like a broken record but shut the fuck up and go away. If you do not like my language, then stop reading what I am writing. Take your small mind, elsewhere. Go save the unicorns, leprechauns, and fairies of the world. Nobody is holding a gun to your head and making you read this. YOU OFFEND ME BY BEING OFFENDED! It’s not like I’m standing in your front yard, screaming obscenities at you. But if I knew where you lived, I would be. I would do all while I held up a huge poster of a picture I have a Ronan which shows how badly his little body was beaten up by childhood cancer. And if you were still offended by my fuck words, instead of the picture in front of your face, I would have to beat you down with my sign the way that childhood cancer, beat my little boy black and blue. So, in the words of some genius out there…. “Fuck you you fucking fuck!!!!!!” STUPID FUCKWADS!!!!!!!!!!!!!!!!!!!!! And really, to sit there and say that because I say the fuck world a lot, I don’t have morals. WOW! That might just be one of the most awesome things I’ve ever heard. Well, if living a life full of morals means living a life the way you do, by judging other people then I am glad I don’t have fucking morals. I hope you like how the shit that you eat for breakfast, tastes. I’m going to stick to my breakfast of champions. It’s called waking up everyday and not getting to cook eggies for my 3 year old son anymore because he is dead from cancer. So instead of not cooking eggies, I’ll just sit around and say the fuck word instead. All while I don’t drink, do drugs, or abuse my kids. All while I try to figure out how to make this world a better place by helping to fight for these cancer babies and their parents. So sorry that offends you, asswad. Sweet dreams to you though. I hope your dreams of little puppies, are nice.

xoxo

A high speed train to nowhere that leads everywhere

Ronan. Substance and Passion. Those are the two words that will not shut up in my head. Those are the two words that I have found on this trip. I think if you have those two words behind everything you do in life, you can do anything. I have done a lot of “things,” since I’ve been here. So much that I feel like I have been here for weeks not merely 4 days. I don’t even remember when I wrote to you last. I think it was on the train to D.C. I have been pretty unplugged here. No computer. No T.V. and guess what the best part is? No screaming voices in my head. They have totally disappeared. Do you know whose voice I’ve heard in my head since I’ve been here? Yours and only yours. I have found so much strength on this trip and I am really hoping it is just not due to being in New York City…. the city that I always feel the strongest in. Or if it is, I really hope I can carry this strength all the way back to Arizona with me and keep it around more often than it has been.

I don’t even know where to start with the Washington D.C. thing. How do you put into words a day and night were you literally feel yourself coming back to life, after being dead? I haven’t the slightest clue but I’ll try find the words to try to do it justice. I got invited to D.C. by my real life, fairy RoMother. I have decided to change the word “GodMother,” to “RoMother,” because I have issues with that asshole and all he stands for. And RoMother is just so much more fitting for this person. Because it is all things kind, pure, and beautiful just like you. It’s been a long time coming, meeting this RoMother of mine. She has quietly been behind the scenes, making big things happen in your name. She asked me a few weeks ago if I wanted to come to Washington D.C. with her and her husband to attend Annie Leibovtiz’s latest show, Pilgrimage, which is being featured at The Smithsonian. I think her words started with, “If your up for a little adventure…….” All I needed was to hear was the word adventure, and I was sold. It turns out this little adventure had to do with one of her lovies, Annie or Al as she calls her. I, of course jumped at the chance as it not only meant getting to meet this beautiful Rosoul of ours, but spending some much overdue time with her as well. Oh, and not to mention the fact that one of the greatest icons in the world was thrown into the mix. And you know my secret obsession with photography. I have been documenting things in this so called life since before I hit puberty. I told K I would be honored to come to the show with her and she told me that Annie was touched that I was coming. Um what? Annie’s touched? Is the world ending? Are pigs flying? No. None of those things are happening but you died so I have no choice but to embrace these gifts that you are throwing my way. You are working so hard babydoll. I just hope I can keep up.
I told K I would meet her on the train. She said, “Cool! It will be something like out of a Hitchcock movie!” I cracked up at this. She is so freaking RAD. I got on the train to Washington D.C. Our little fairy RoMother found me on board. I got to give her the hug I had been saving for her, for so long. I was already settled in my seat next to some stranger when she found me. Katherine and her hubby went into a different car to meet up with one of their good friends who was along for the trip as well. A few minutes later, K appeared and hijacked me into moving seats, to come up and sit with them. She introduced me to her friend and we settled into an easy conversation as we sailed through the world on a high-speed train, to our unknown destination, we joked. The scene outside looked like something from the movie, “Twilight.” It was dark, dreary, foggy, and cold. So mysterious. So Hitchcock. In other words, my heaven. I watched the trees fly by. I held your GiGi on my lap and buried my face in it a lot. I saw a Billboard sign that read, “Jesus Saves.” I thought to myself, “That is so fucking offensive. Jesus didn’t save my son. Jesus isn’t saving all of these other beautiful souls.” I got mad and told Jesus to shove it up his ass. I wish I would have had a machine gun strapped to my body so I could have blown 1000 fucking holes in that sign. I didn’t so I scribbled in my journal about it instead.
We arrived in D.C. and were whisked off to the hotel. We got checked in and we all decided to tool around the city for a few hours before Annie’s show. I spent the next few hours smiling like I have not smiled in a very long time. Here I was, with these 3 strangers who did not feel like strangers at all as I was so comfortable. Katherine’s husband, Mark gave me a personal tour of every single monument we set eyes on. And it was so much more than anything you could ever learn while sitting in a history class for school. It was more like a history class for life as I listened to this man share with me his knowledge of things that came from so much more than a book. We grabbed a quick bite to eat and before we knew it, it was time to get back to the hotel so we could get ready for Annie’s show. We all took about an hour to rest/shower/change/dress and head out the door. I wore my black jeans, a red jacket with a black skull shirt underneath it that Dr. JoRo gave me. I of course, had to represent the grief look that I carry around with me 24/7. Dr. JoRo’s skull shirt was the perfect item of clothing to do this. And of course the gold locket with your ashes in it that I always wear around my neck. I wouldn’t leave home, without you. Ever.
We arrived at The Smithsonian for Annie’s private show. I was not sure what to expect except for I knew I was in very good hands so it would be nothing short of amazing. I let K lead me around and she introduced me to every single person we came into contact with as her friend, Maya. Everyone knew her and I watched the ways their eyes lit up in her presence and how happy every single person was to see her. What an amazing soul. Not many people can elude a light around them the way K does. It’s so bright and warm that everyone just soaks it up. She is the kind of person that makes you want to be better person because everything she does is fueled with passion and kindness. And a little kick ass badassness as well. My kind of girl for sure:) We went up to see Annie’s show. To say that it was genius does not even begin to describe it. The beauty of her pictures was so powerful that it left me spending much of the night, wiping tears from my eyes. It was so electic and different from anything she has ever done before. Her latest show focuses more on the beauty of America. She featured the lives of so many influential people who even though they are gone, continue to live on due to the mark they made in the world while they were here. I spent the night getting lost in the world of Emily Dickinson, Ralph Waldo Emerson, and my favorite piece of the night… Annie Oakley’s heart target. Oh, how that piece spoke to me. The story behind it, is incredible too.You could see that Annie poured her heart and her soul into this project. Her beautiful work, speaks for itself. I had heard that she took this on due to going through some hard times. I hope it helped to heal her heart a little. Just the little time I spent looking at her work, it helped to heal mine. I cannot imagine being the one on the other side of the camera, who took those pictures and made them into art. It must have been so cathartic. At least I hope it was. Otherwise, what else is the point? A woman who spends so much time, bringing happiness to others, through her work, deserves happiness as well. So much happiness.We spent a couple of hours at the event and then Katherine took me and introduced me to Annie. When I first saw her, I thought to myself, she is so beautiful. She looked so happy and proud of her work. A true artist who is so well known that she is a household name. But at the end of the day, she’s just a mom like me. If I would have ever been starstruck at anyone in my life, it would have been her. But that’s not the way I felt when I met her. What really registered with me is that she is a mom who has unconditional love for her daughters the way I love you and your brothers. She is a mom who has had a very successful life due to working hard, fighting for what she believes in and following her heart. Those are the things I admire most about her. Those things can take you to a whole new level while living on this earth. Katherine introduced me to Annie who embraced me for a big hug. I got choked up, told her it was an honor to meet her, and thanked her for such an amazing show. The next thing I knew we were all aboard Annie’s private bus to take us back to the hotel where we were staying. Annie came on the bus and everyone broke out cheering, clapping, and screaming for her. I had a moment when I thought to myself, “HOLY SHIT! I’m on a party bus with Annie Leibovitz!” But then I remembered the price I had paid for this seat which is ultimately your death. We both know I would not be doing things like this if it were not for you. I’m just sorry you had to die in order for beautiful things like this to happen in my life. But it is because you were so beautiful, that these things are happening. Because so many people in this world know things have to change and they are going to help us do this. I am truly thankful for that. So thankful and humbled, Ronan. The Annie party bus thing sent me into a fit of giggles and I thanked you for all the little things that you are doing. As soon as we got off the bus, I was walking into the hotel with Annie right next to me. I just looked at her and said, ” As a mom whose heart is broken into a million pieces, I just want to thank you for giving me a break from that tonight by letting me get lost in your work and your world.” She looked at me and said how sorry she was and that she could not imagine going through something like this. I said I knew. Nobody can.

Everyone filled up the hotel bar where I sucked down waters and mingled with the kindest people. We ate a little food, talked about Annie’s show, and talked about you a lot too. We talked a lot about childhood cancer and how wrong it is that nobody wants to pay attention. This is not going to be the case much longer, Ro. Not if I have anything to do with it. It seems to me like a lot of people are paying attention now. It seems to me like there are going to be a lot of changes and I know it is all because of you and because of our love story that is never going to end. I ended the night with my new friend, Jesse and his husband. Jesse is the one who sent you the signed Annie Leibovitz Star Wars poster. Another doing of your little RoMother. Jesse was so excited to meet me and had tears in his eyes the entire hour we spent talking about you. His husband lost a good friend to cancer who was really young and he was so proud to wear the “Fuck you cancer,” bracelet that I gave him. He said his friend who had cancer wore a hat that said this all the time. Because we all know if anything deserves the FUCK word most in life, it is cancer. I headed back up to my room about 1 a.m. and was beat. It took me awhile to settle down as my head was still spinning from the nights events.
We all took the train back to New York the following day. It’s been non-stop since returning from D.C. I had dinner with your old Sloan roommate, Phoebe’s mom, Ellen. It was so nice to see her and hear all about how Phoebe is doing. She is not walking yet but she is getting closer. I got to see a picture of her hair that is growing back in. She is so beautiful. She is so strong. She was so strong before all of this and it is such bullshit all that she has had to go through in order to “prove” her strength. She is here though and I know Ellen is so thankful for that. I would give anything to have you here, no matter how much damage the cancer had caused.
Yesterday, I ran around the city and met up with Katherine downtown at a photo shoot that she was finishing up. I got a tour of the studio and all the behind the scenes things that go on. We walked around the neighborhood and ended up grabbing a bite to eat nearby. It was there that we had a total powerhouse/pow wow/ let’s FUCK cancer up, meeting. I told her all the ideas I have swarming around in my head. She told me every single one of them was achievable and I was just the person to get things done, the right way. I am dreaming really, really, big RO. I am thinking about doing things that nobody has done in the name of childhood cancer and I know each one of these things I set out to do, is going to happen. The face of this disease is going to change in a big way all due to you and all the love and support you have behind you. I thanked Katherine for believing in me so much and for all she has done and is doing for us as she is our biggest cheerleader who truly knows how to get shit done. And she does this all out of the kindness of her huge heart that she has. She does this without asking of anything in return except to stand by my side while holding my hand and screaming, “FUCK YOU CANCER!!!!!!!!” right next to me. She is so beautiful in every single way a human being can be beautiful, x’s 1ooo. I am so thankful to her for opening her heart and her world to us. It’s something beyond this world.
After I got home from my afternoon with Katherine, I set out for a long dark run. I ended up running by The Ronald McDonald House and I stopped and peaked inside, just begging to see you. I couldn’t find you, so I left there and headed to Sloan Kettering instead. I got to the doors of the hospital and stopped and stared inside. I told you how sorry I was. I sucked in a deep breath and let out my tears. I didn’t go in and blow anyone up tonight, but I wanted to. I went to the Starbucks nearby instead and loaded up a gift card and told the cashier to use it on everyone who ordered a coffee, until it ran out. She looked shocked. I wasn’t planning on telling her why I was doing this because sometimes it’s just nice to do things in an anonymous way. I wasn’t expecting her to ask but she looked at me and said, “May I ask why you are doing this?” She caught me off guard. I could feel the tears start to form but I somehow managed to get out the words it was for my son, Ronan, who passed away from childhood cancer. I showed her your picture. After that, I ran all the way home feeling a mixture of sadness and strength that carried me the entire way back through the dark, freezing streets of NYC. Invincible, Ro.
I have so much more to tell you, baby doll. But I’m now on a train to Philly. I’m going to see Dr. Mosse at CHOP. I need your strength more than ever as today is going to be hard. The last time I looked that woman in the eyes was when she was telling me how sorry she was and how the medical world, had failed us. I now know that there are so many more things to for blame for killing you, then the medical community alone. I’m going to fix this. I’m going to change this. You will not die in vain. You will never be a fucking statistic.
I love you to the moon and back. I miss you so much. Thank you, Ronan for filling my life with the most beautiful people possible. Thank you for all the gifts you are leaving everywhere. I hope you are safe. I love you so very much.

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xoxo

Also, PLEASE…. DO NOT SUPPORT THE RELAY FOR LIFE IF YOU WANT TO SUPPORT KIDS.

I had someone tell me that a team was being formed for Ronan through the American Cancer Society and the Relay for Life. PLEASE DO NOT SUPPORT THIS ORGANIZATION IN THE NAME OF KIDS. Unless they change the way their greedy, corrupt organization works, which is a fucking business and nothing else…. Please DO NOT DONATE TO THEM. They have NO INTEREST IN SAVING OUR KIDS.

Please research where your money is going. I cannot stress this enough. Too much of it gets wasted on bullshit that is not going to make a difference. WE HAVE TO BE EDUCATED ON WHERE EXACTLY OUR HARD EARNED MONEY IS GOING. Stop the insanity of letting these assholes get paid huge salaries all in the name of fucking cancer. That is beyond FUCKED UP!!!!!!!!

Thanks lovelies. Have a RoBeautiful Day!!!!!

xoxo

New York Fuckin City and Cancer is an Asshole

 

 

Ronan. I’m here. Back to the place where we were basically told there was nothing left we could do for you. Back to the city that was supposed to heal you. Well it didn’t. I’m hoping it will heal me a little I guess. I’m not giving up on this city. I’m not going to let it make me so bitter and sad so that I can never return here. I’m here and this city is still as lovely as ever. A perfect place for an insomniac like me.

I’ll admit it, I was a little nervous and sad to leave tonight. I had a moment when I was saying goodbye to your daddy and brothers before went through the security line. I gave them lots of hugs and kisses. Liam was being so stoic and brave about me leaving. Quinn had tears running down his cheeks. Your daddy looked sad as well. It killed me to leave them but as I have said before, I don’t have a choice. This is something I need to do. As I was sitting in the airport, waiting for my plane I thought to myself, “What in the fuck are you doing? You are leaving everything and everyone behind that you love to go to a big city where you know, nobody. Who in the world do you think you are?” Then I remembered, I am your mama. I can do anything. I may not know what the fuck I am doing; but I’m not going to stop until I figure it out. I owe this to you and I owe this to myself. I told you I died when you died. I know this. I have to do things like this in order to live again. I don’t know why it is that you wanted me to come back here again and at this specific time, but your little voice in my head has been too loud for me to ignore. I know you have a bigger plan for me and I know this is part of it. So here I am. I’m here and listening to you in every way possible.
Hi little bug. I fell asleep shortly after what I had written above. It must have been about 5 a.m. when I finally passed out. I woke up around 9, made some phone calls, showered and headed out into this big, beautiful city that I love so much with no destination in mind. I walked for a few hours. It’s cold, crisp, and the city is covered in snow. I didn’t go anywhere special but I just let myself get lost in my surroundings. I called your brothers and daddy to check in. I didn’t have anything specific planned but some things came about anyway. I met up with a lovely man named Scott. He is one of the men who started up Solving Kids Cancer which is based out of NYC. I touched based with him a couple of months ago to let him know I was coming out here and that I would love to meet him and pick his brain. So we ended up meeting later this afternoon. It’s so strange this little shitty fucking club of ours that we now are a part of. As soon as he walked in, I got up and gave him a hug. I have never seen this man before but I felt like I’ve known him forever. We slipped into an easy but difficult conversation. The one where you sit across from this stranger and you have no guard up and no filter because you notice he has the exact same sad eyes as you. So you sit and talk about your dead children, your alive children, your friends, your life before and your life after. No topic is off-limits. You sit and talk about how your kids got the short end of the stick and you say the word fuck a lot. You talk about how you know you have no choice but to change the face of childhood cancer. I felt myself breathe and exhale easily today, while in Scott’s company which I never do. He has so much love for his little boy, that was taken away, and I know he is going to fight this fight as hard as I am. He is not going to stop until things start changing. It was nice today to feel like I was not alone in this big fight. It was a day that I very much needed and I appreciated it so much. He let me pick his brain which I loved. He is smart and you know I always appreciate that. He totally has his PH.D in this childhood cancer thing. I’m sorry he does. I so wish he did not. I wish that for both of that but as we both know, wishes don’t fucking come true.
After my afternoon, I ran back to the apartment to change as my friend, Kelly, told her husband I was here and he texted me to see if he could take me to dinner. She is still back in Oregon and Derrick is living here while Kelly gets things packed up for their big move. I have not seen Derrick since the summer we spent with them, over in San Diego. The summer where you and their little girl, Grace, fell in love. I’ll never forget that summer, Ro baby. You and your little tan beach body. You and Gracie spent so much time together playing and loving on one another. It was such a good summer. It was good to see Derrick. He and Kelly have been such good friends. So supportive from a distance. We had a nice dinner and he showed me where he works now at MSNBC. We got caught up and talked about you a lot. Seeing him made me miss Kelly and our old life, so much. Our old life when you were here and healthy. Derrick sat and told me how strong I was to keep going on and pushing forward. He told me there is no way he would be able to do what I’m doing. I just told him that I don’t have a choice. I’m not going to just curl up in a ball and not fight for you and all the other babes out there who are dealing with this or who may be dealing with this in the future. I’m not here to sit back and do nothing. I’m still your mama, Ronan. I’m not brave or strong or a fighter. You are. All I’m doing is being your mama, in the only way I can now. After Derrick dropped me off, I changed my clothes and headed out for my most favorite thing in the world. My dark and dangerous Central Park run. It was so cold and the entire park is covered in snow. I ran a fast paced 6 miles. It felt so good it gave me a chance to clear my head from the things that had happened during the day. I took some time to think about you, a lot. Like I always do.
GOD FUCKING DAMN IT. I have not been on the computer at all. I have purposely been avoiding it. I just got on my Facebook to check my messages. I just found out that Coach Bemis passed away. The dad of the 2 most beautiful girls who came in to get some Fuck You Cancer bracelets a few months ago. I just happened to meet them and said hello.  It was there that they told me that their dad had been diagnosed with Stage IV Lung Cancer and he didn’t even smoke. I have been following his story even since. I didn’t know things had taken a turn for the worst so fast. I’m so sorry girls. I wish I could hug you and take this all away. I’m not going to say anything stupid like, “He’s in a better place,” because I fucking hate that. All I can say is that life is not fair. There are too many good people who are taken away and it will never make sense. All I can do is scream, “FUCK YOU CANCER!!!!!!!!!!!!!!!!!” for you. And cry for you and hope that if there is something else beyond this world that your dad will get to hang with Ronan. I don’t know what to make of any of this. When in the fuck did life get so hard? I mean, I know life is hard…. but this is beyond hard. This is beyond the petty everyday bullshit that people bitch and complain about. Try outliving your child. And Coach Bemis. He has a family that now is supposed to sit here and figure out how to go on without their dad? The most beautiful family. Who can justify this? You can’t. It’s just the fucked up life that we live in. You can’t make sense of any of this so people need to stop trying. Sometimes, there just are no answers. For as much as we want them, there will never be an answer that can justify any of this. I’m sorry Makenzie and Brianna. So fucking sorry.
Ro baby. It’s Monday now. I got up early this a.m. to go meet up with another Mama, Gretchen who lost her little boy, Liam to Neuroblastoma too. Just a year ago, today. Guess what else I found out about Liam? That he was born the day after you were. He was born on May 13th. I know that wherever you are, that you are friends. He sounds so much like you. I got to give Gretchen the hug that I’ve wanted to give her for so long now. I got to meet another person who has the same eyes as me. She started up Cookies for kids’ cancer. She is taking her pain and channeling it into something so unbelievably beautiful. All because of the love she has for her child. And because she knows that she does not have a choice because when the day comes, that she does get to see Liam again, she is going to be able to tell him how she did make a difference in the lives of others. How she did stand up and fight for all of these other innocent kids. How she stood up and fought for him and she never stopped just like the way, I refuse to stop for you. I’ll never stop fighting for you, Ro. You give me the strength to do this. What choice do I have? This is my way of taking care of you now. I’ll always be your mama. That will never change.
So, now I’m on a train to Washington D.C. I got invited on a little adventure that I jumped at the chance at all because of you. I am taking you with me, just like I took you with me everywhere. Oh, how we loved our little adventures so much. It’s going to be a good one. I can feel it. This trip is exactly what I needed. It’s been a whirlwind of calmness and craziness that I love. That I’ve needed because I tend to get stuck in a rut in AZ. I often feel like I can’t breathe there. I am really glad I listened to you and fought for this trip. Thanks for being such a constant, strong voice in my head.
I love you baby doll. I miss you so much. I hope you are safe.
xoxo

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Dr. Giselle Sholler

I think she’s on to something…..

http://www.ascopost.com/articles/january-15-2012/first-genomic-based-pediatric-trials-launched-in-neuroblastoma/#.TxmBZzx4VfN.email

Wipeout Childhood Cancer!

Ro baby! Even with my mushy mush brain, I have genius ideas! You know how we LOVED that show on ABC, Wipeout? How we would all watch together during our family fun nights?? I’m watching it right now, with your brothers, without you which I HATE, but………

What if I went on that show? And they could call it the “Wipeout Childhood Cancer,” episode. GENIUS!!!!!! Does anybody have any hookups with ABC? Maybe if we write to them, they will agree to do this! How fun would that be?

Anyway, Ro. It’s just one of my 50 thousand ideas. All for you. Always for you. I love you. I miss you. I hope you are safe.

xoxo

 

Thank you Grey’s Anatomy!!!!

 

Ro baby. I don’t watch T.V. anymore. It makes me too anxious. But I am hearing that tonight’s episode of Grey’s Anatomy will feature a story about Neuroblastoma. I think everyone should tune in. I will be curious to see if they will be able to even come close to touching on how horrific this disease is. I am so very thankful that this disease is finally getting the attention it deserves. I feel like a movement is happening in the world of childhood cancer. I feel like you are the reason why. I love you. I’m so tired tonight from the 3 hours of sleep I got last night. No Ambien. I tried everything natural instead but it didn’t work. My mind just won’t seem to shut off anymore. All it wants to do is think, worry, scream and cry about you.

I saw Super Nate today. He’s been declared NED which is so huge. Next step for him, is transplant. Thank you for watching over him. Thank you for making him, remind me so much of you. I smiled and cried today over both of those things. He is such a feisty little fighter. I’ll try to check in with you later tonight, Ro. But if I don’t get to due to being too sleepy, G’nite, sweet dreams, I love you. I hope you are safe.

xoxo

I love you more than Liam loves Bacon.

 

 

 

Ronan. As you know, your post got hijacked last night due to some man and his ignorant comments about childhood cancer. The only person here that I am apologizing to, is you Ronan. I’m so sorry that I didn’t get to properly tuck you in last night due to having to call some guy a fuckwad. Somebody has to get their hands dirty in this game of childhood cancer, Ro. I guess I’m that person now because I am here to say what is the truth. People need to stop being ignorant when it comes to things like childhood cancer. The world of people who are now aware, are getting really sick and tired of it. I am not going to be silenced because I am worried that I am going to offend someone. I am not here to make friends. I’m here to make FAMILY. A whole, new big family that is going to take this world by storm and stand up for the things they believe in, such as you and childhood cancer. People need to stop looking at childhood cancer like it is the plague. People need to start looking beyond the scary world of childhood cancer and see all the beauty that can come out of it. And yes, I get to say this even after you died. Even after childhood cancer ripped you from my arms, I can still see the beauty in all of this while calling some douchebag a fuckwad. This man has since written a public apology. Actually, I’m not sure he even really wrote it, but that is what he is claiming. Whomever wrote it did a really shitty job. It lacked any ounce of feeling or real emotion. This apology means nothing to me. It’s going to take more than a few words, to even start to undo the damage this man has done and all the people he has pissed off. A lot of people are asking for him to resign. I’m not going to ask of this. I’m going to ask that something really, really good come from all of this. My wish is that because of all of this, he is now aware of how NOT rare childhood cancer really is. I am going to wish that he takes this lesson and hugs his kids tighter. Laughs with them longer. And really takes the time to pour every ounce of love that he is capable of feeling, into his kids. All because he is so incredibly grateful that he is not the parent who is driving down the road while taking their dead child’s blanket and inhaling it just so they can be reminded of how their child once smelled. My wish is that he will become the best father and human being that he can possibly be. And just for good measure, he can donate a ton of money to your foundation. Although that opportunity may have flown out the window when I decided to call him a fuckwad. So maybe he should be the one to now push for this Barbie to get made. He can turn his wrong into a right but it is going to take much more that a heartless apology letter.

So Ro…. what have I been up to? So much. Too much? Maybe, but as of now I’m in “the zone.” I have a lot of things to get done. I left the house at 7:30 this morning and I am just now getting home. It is 11:30 at night. To say it was a long day, is an understatement and I have the headache to prove it. But being the good mama that I am, I could not go to sleep tonight without tucking you in. I could sit here and catch you up on so many things that have been going on, but I am having a hard time even formulating my thoughts so I am just going to tell you this one little bedtime story. The best one of the night where no fuckwads or douchebags are involved. I had a little meeting tonight. A meeting all about you and your foundation. It lasted almost 4 hours. I sat in a room full of the most gorgeous women that ever lived. One’s that I believe in so much because of the way I have watched them believe in you. You know how I often just sit back and quietly watch things? I do this a lot. I like to observe and sit with things. I depend on you a lot to give me the green light on people, places or things. I know you know I listen to you, more than I listen to anybody. Tonight, you were so right. I was in a room that was so full of love that it could have circled the moon and back. I was talking about you to this group of women, which is still so hard for me to do because all I want to do is cry and for you to appear and for all of this to go away. But as we have established, you are not physically coming back and I am now left here to try to fix this broken mess of a world. As I was talking about you, I was in the middle of saying how I want to do amazing things for your foundation to raise money, but how I feel like this market of charity events is oversaturated with things like Balls, Galas, and other fancy things. This is GREAT for other foundations as it does generate a lot of money….. but  I don’t feel like this is the right direction for your foundation. Somebody said out loud, “Then what would be your dream event?” My reply was, “A huge rock concert.” Just as I said these words, a very large, heavy book came flying off of the shelf and landed on the floor. BAM! The timing of this book flying off of the shelf after the exact moment that I said these words, was so uncanny that I know it had to be you. I just had to be. It was your way of giving me the green light. A rock concert is what we shall shoot for, baby boy. You said so yourself. I truly believe this and I am pretty sure so does everyone else in that room tonight. You are the best little boy, Ro. Thanks for being there for me when I need you the most. Thanks for never leaving my side. I’m so lucky to be your mama.

I’ve got to end this tonight due to my raging headache. I’ll do it with tears running down my cheeks like I usually do, but tonight it’s not only because of how much I miss you. It’s also because of how LUCKY I feel to have the support and love that I do. Because of how much of an honor it was for me to be a part of these women tonight. The fact that they have opened their hearts to us will forever leave me humbled and grateful in a way that I never knew was possible. I am in awe of each one of them and I am so inspired by them; for so many different reasons. Tonight my very big, very broken heart feels a little big lighter. Thanks, Ro baby. None of this would be happening if it weren’t for you. I love you.

G’nite baby doll. Sweet dreams. I hope you are safe.

xoxo

Because I miss you all the time. And I know you miss me too.

http://youtu.be/4O-FlEsBtow

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