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
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16 Comments

  1. Maya, I have tears of sadness and of joy. What a remarkable journey you are on. I miss Ro, I’m so sorry for this journey. But I’m also excited. I can’t wait to hear what happens next. XOXO

    Reply
  2. Kerri

     /  January 26, 2012

    YOU ARE AMAZING, not only were you amazing before you lost your precious RONAN, you are just as amazing now. I am soo sorry that Fucking Neuroblastoma has taken your baby from you. I have been following your blog, after reading a blog from my home state of another family who recently lost their little girl to Neuroblastoma. I had never heard of it before, 2007 when a little girl my daughter danced with lost her life to it as well. It just isn’t fair that these little children have to go through such terrible medical treatments, and the treatments are still not saving them. I will do whatever I can to make sure people become aware of this terrible cancer and hopefully something, someone will find a way to stop this terrible Cancer! Thank you for sharing.

    Reply
  3. Tears and smiles for all the adventures you are taking towards changing childhood cancer. Thank you Ronan for for sharing your beautiful mamma and your beauutiful life with us.

    Reply
  4. ann in NYC

     /  January 26, 2012

    Go Maya gooooooo !!! may the force by with you ! always Ro

    Reply
  5. Glenda

     /  January 26, 2012

    Maya,

    Keep doing what you and Rockstar Ro are doing! Keep smiling! Wild and Free!!! xo
    Can’t wait to hear all about Philly!
    Always Ro!

    Reply
  6. Dawn

     /  January 26, 2012

    Maya- Your words are amazing. I am in awe in how you express your feelings and emotions. I believe everything you said about Ro making all of this magic happen….It just pisses me off that he had to die in order for attention to be brought to Childhood Cancer!
    However, I know big things are going to happen!
    xoxoxo

    Reply
  7. Colleen Fisher

     /  January 26, 2012

    Wow! Talk about an adventure! Go, Ro, go!

    Reply
  8. Robin

     /  January 26, 2012

    No words, just RO-MAYA-ZING!!! what awesome gifts Ronan is leaving you to let you
    Know he IS always with you!!! ((((hugs))))

    Reply
  9. Julie

     /  January 26, 2012

    I absolutely LOVED reading this Maya, I feel so inspired after it, my heart is filled with so many emotions, heart break and excitement for everything that you and Ronan are going to accomplish! there is not a day that goes by that Ronan doesnt pop in my head, something vibrant purple, star wars or my 3 year old saying something very spicy, he is a constant thought in my mind, and I pray to RO every night that you guys can bring more answers to childhood cancer and bring it to its end, but until then and for right now it can FUCK OFF!!

    Reply
  10. Maya, I saw this picture on pinterest and thought of you and your little Ronan.
    http://pinterest.com/pin/110549365822646305/ Hope you like it.

    Reply
  11. sheryl mobley

     /  January 27, 2012

    Good job Maya! Keep it up… substance and passion! We can change the world one person at a time. I’m proud to know you. :)

    Reply
  12. sheryl mobley

     /  January 27, 2012

    By the way… LOVE your family Christmas pic with the tree. It’s like Ronan’s little head is in the Star Wars mask on top of the tree.

    Reply
  13. Sue Brigman

     /  January 27, 2012

    So happy to hear you have had a little relief in my favorite place of all, NYC! Just yesterday Jim found a Valentine’s sucker at Walmart that is purple, with the words “Rockstar”. Even the font looked like what you use! We went to your Mom’s deli yesterday, and your Mom gave it to our grandaughter, Claire. I hope she never bites or licks it because it truly looks like your rockstarronan. Your blog was outstanding!

    Reply
  14. Michelle H.

     /  January 27, 2012

    I was so happy to read this update. Your Central park run took me back a year, that’s for sure. I agree with so many that Ronan is working these amazing things through you. Its really neat to see it happen…there are changes a brewin’ I tell ya. Big hugs to you!

    Reply
  15. Amazing – you and Ronan. Safe travels. Fuck you cancer.

    Reply

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    Hijacked @knjoy's pen to write her letter to the Empire State Building. #poppy #ronan #poppyforpresident #fucancer #gettinshitdone #meow Who here things I'm getting on the red eye without taking this gigantic Hello Kitty pillow with us? Thinking probably not... #poppy #ronan #poppytakesnewyork #fucancer #theadventuresofpoppy/Pearl #notvisitingtheempirestatebuilding #hellokitty #meow @knjoy Sounds like the best idea ever. @knjoy @kmacnyc @poppyroo #ronan #fucancer #pearlcancometoo #nyc #hiempirestatebuilding #beboldgogold #eatsleepraverepeat @ally @rachelatnyu
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