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.

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.


26 thoughts on “Back to a reality I don’t want”

  1. Well said!! Last time I checked we live in the USA and have freedom of speech. If the don’t like your fantastic use of the word fuck, they can take a flying leap to Fuckville!

  2. Your raw choice of words, which it seems others are bitching about… makes it real. Really real. Probably too real for them… *hugs*

  3. Maya,
    So much I want to say, but hard to put into words. Let’s just say I love hearing about you “gettin shit done”. I saw an article about a woman who had lost her daughter. And of course, every person’s experience is different. But she put it into words what seemed to click with something similar to what you were saying above. She said that she had to not only mourn for her daughter, but she had to mourn for her old self. Because she was never going to be the same person again. Ever.
    I feel the fire from you – the glorious, strong, urging fire to make things change. You are a sight to behold, a presence to reckon with. I feel it in my bones. You are going to change the world of pediatric cancer. Always thinking about you and the family, and sending my love.

  4. You make me smile the way you rail against the prudes who feign offence at your language. My 2 F*CK YOU CANCER T-shirts arrived in the mail last week and I wore one to work today. I may have to order some more. Tomorrow is my last day there as I start to collect a pension and start my own company. No matter how busy I may get in the next little while, I will continue to follow your blog.

  5. Thank you for your strength and candor. My son is dying of a rare genetic disease and I appreciate your perspective. Screw anyone who tells you that you don’t have the right to share your mind.

  6. Maya,

    You are so fucking real and raw!!! Keep rockin’ Rockstar mama!!!

    So glad NYC was everything sparkly! Sounds like the trip was successful!

    Thinking of Rockstar Ro!!! Always Ro!!!


  7. I don’t have kids and I don’t know if I ever will but I know that if I ever do, I will be insisting that my child be checked for neuroblastoma. Even though I’d be terrified that they have some sort of cancer, at least I would be aware of it and I have you to thank for that…though I wish to Ro that I didn’t. It sucks that we are all more educated and aware because of what you have had to endure. It’s fucking bullshit.

    And speaking of fucking bullshit – anyone who has the NERVE to complain about your language can go fuck themselves…fuck you all very very much. Get a life, grow a brain and get the fuck over it. Assholes. I am so looking forward to getting my Fuck You Cancer bracelets from Katie – i sent the cheque for them last week 🙂

    By the way – I have missed your blog soooooo much! I took a lot of comfort in knowing that your silence was due to you being a busy little bee in NY ❤

  8. Loved your post…I am glad that NYC and Philly is renewing you, giving your strength.
    Here is just a stupid thing to share…today I had gotten groceries and was “fighting” the bags into the trunk of my car in the parking lot and I banged my head hard on the trunk lid. (ya, not very coordinated, I know!). Anyway, when I felt the pain, I just instantly yelled out “FUCKING CANCER!” pretty loud. Two teens were walking by me at that moment and said “Right on lady! Fucking Cancer”!
    It’s now my new curse word … Fucking Cancer!


  10. Hi Maya. I am so glad that your trip to New York was everything wonderful and more. I know that good things are going to come from it. You are an amazing Mom, and you are going to shine “bright lights” on childhood cancer. As for the busy bodies, they need to fucking get a life and leave you alone!! Your lovies have got your back!! xoxo Cheryl

  11. You are so amazingly strong, Maya. Your beautiful family is so fortunate to have you here, doing what you are doing. Your gift with words is something else, and I love how you express yourself with so much heart and soul. You are absolutely right…if someone is offended by anything you say that is their problem. That is just their stupidity, ignorance and fear speaking. Your beautiful Ronan is so proud of you and the light you continue to shed. You just keep going…keep doing what you are doing.

  12. If I may, I would like to address the person (s) who feel they have a right to comment on your vernacular, in particular, the “f-word.”
    We are all protected under the First Amendment, which is located in The Bill of Rights, you probably already know that. This right gives us the freedom of speech and allows us to have forums such as these in which to express ourselves. Perhaps if you, you being the offended reader(s), do not like the f-word, then perhaps the most intelligent and logical thing to do would be to not read Maya’s blog. Maya and Ronan owe you absolutely nothing and unless you are a masochist, then it makes sense to not go to I have an idea, instead of reading Maya’s blog, passing judgement, then feeling the need to chastise her; here’s a thought. Channel that energy into raising awareness about childhood cancer. Maybe do some research about childhood cancer and use your time more productively. I hope beyond hope that if you do come back and read her blog that you scroll down and read the comments, I would venture to guess that you might, if only to see if anyone comments about her choice of language and admonishes her as well. It would be great to have a nice, pleasant discussion about childhood cancer. Specifically this beautiful boy, Ronan. That is impossible, so the best thing for you to do is click the “x” in the upper right hand corner of your computer screen and have a fabulous, cancer-free day.

  13. I don’t understand why people feel the need to tell you that they are offended by you. Its like someone saying “you look like shit today”. There’s just no need for it.

  14. you are ROmazing! everyday i love you more and more!! thank you for fighting and for being so FUCKING blunt.

    “fuck you all you uptight fuckity fucks!’

  15. The only thing is, Fuck isn’t even a strong enough word. We need something bigger, uglier, more shocking and raw and gut wrenching than fuck.

    Wish I knew what that word is.

  16. Maya ~ I live in the Phx area and will join you out on the front lawns of all those FUCKWADS that are offended by your language. Let’s go get ’em!!! xoxo

  17. Love this post. Love watching you come back to life, even if it is a different life. To those that are offended – you are ridiculous, go. the-fuck. away. xoxo

  18. You are fucking amazing!! FUCK the FUCKWADS of the world…and there are plenty of them out there!!
    Keep doing what you are doing and be PROUD of who you are!!

  19. Behind you all the way Maya! I believe in you with all of my heart and and Ro. So glad you trip went well, and I just have to say, I wish you would’ve had the chance to do a little ball kicking!

    Oh, and fuck the people that cannot handle your language…..Cancer has no FUCKING filter….it amazes me at what these morons get pissy about.

    My eyes fill up with tears everytime I read your words. I cannot imagine the pain. Thank you for letting all of us In to help you make changes in this fucked up world of children’s cancer.

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