“A little fishy just told me, just keep swimming, just keep swimming,” Talia Joy Castellano

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Ronan. I got though the 4th of July alright. Mostly just by being distracted which is the only thing that ever seems to get me through anything. I went through the motions and tried to be as “present” as I possibly could. This means playing croquet without you, baseball without you, watching fireworks without you, etc… Macy is still here and that always helps so much with everything. I only had one little sob fest melt down in front of a few people. I couldn’t help it. I was watching one of our family members, hold your Poppy sister for the first time. I don’t know her at all as she is related to us through marriage so this was the first time I had met her. She is young, sweet, and also a bereaved mom. Not too long ago, she lost her first baby girl to still birth. I was surprised she wanted to hold Poppy at all and honestly felt a little guilty about her having to be around a new baby at all. She scooped her up in her arms and just sat and held her while she smiled and cooed at her. Your Uncle Shawn was right there and said, “Do you guys have any kids?” She quickly said, “No, not yet,” while she fumbled with her words a bit. I thought to myself, “Yes you do” but I didn’t say it out loud. It’s not up to me to decide how one talks about their dead babies. I quickly looked up at her and said, “I’m sorry about your baby girl.” She said, “It’s o.k. I’m sorry about Ronan.” That’s all it took and there was nothing I could do but let the tears roll down my cheeks while I helplessly looked for someone, anyone, to wipe them away. I was mostly just looking for you. I cried for her and me and for this fucked up club that we are in that I wouldn’t wish on my worst enemy. I pulled myself together within a few minutes but not before Quinn came bouncing in the room just in time to look at my red, puffy eyes. That kid is always so aware of everything that is going on especially when it comes to my feelings. I sucked it up and got up to play in a little boys vs girls baseball game. Girls won of course:)

We spent the rest of the day together missing your Daddy and you. The 4th of July will never be the same again, much like all of these holidays. This one isn’t as hard for me as the others though and I enjoyed it as much as a mom could who has had the love of her life, ripped from her arms. Your brothers had a great day and at the end of the day the smiles on their faces are what gets me through these retched holidays without you. But it’s hard to watch the entire world celebrate a day when you are in constant pain yourself and also so aware of all the pain in the world as well. For me, the pain consists of all of the bereaved mom, dads and siblings and for all of these kids battling cancer. I now live a life where every single firework seems like an absolute waste of money. Every time a firework went off I thought to myself, “There goes another kids’ life and another parent’s broken heart.” I had a vision of what it would be like if just one year, fireworks didn’t exist on the Fourth of July and instead the money was donated to a childhood cancer charity. Imagine how much good that could do. That would sure make me smile much bigger than watching some lights in the sky. A girl can dream, right Ro?

Things around here have been busy, but in a calm and peaceful way. Poppy is still breastfeeding like mad so it still feels like I am feeding her around the clock. She is still sleeping through the night which I’m so amazed by. She seems to want to make my life as easy as possible; for the moment anyway. I’m sure she’s got some good tricks up her sleeve and I can’t wait to see all she has in store for me.

Ronan. I started this a few days ago and I can’t really concentrate on what I am saying to continue on with this post for a few different reasons. One being that Macy left today and I hated so much seeing her go. Who would have guessed that this girl who came into our life in the middle of your diagnoses, because of you and this blog, would be one of my greatest treasures in life? We won’t see each other for a few months and dropping her off at the airport this morning was just awful. We both cried, parted ways, and I hated every second of it. Macy is the sister I never had and my ray of sunshine that is never blinding to me. We all had the best week with her and I know Macy brings out the version of me, that I used to be. I miss that me and it’s nice to see her once in a while. I do wish I could see her more often, but for the time being I will just enjoy her when I’m in the presence of our Macy girl. Nobody makes me laugh and smile the way she does. I know this is the reason you chose to put her in our life. You always pick the best for me and I am so thankful for that.

The second reason I can’t concentrate is because of a girl named Talia who has been on my mind since I found out about her shortly after losing you. I’ve followed her updates, cheered from the sidelines, admired her bravery and attitude while dealing with the shitty hand she was dealt. Talia was diagnosed with that same mother fucker that killed you. She has been fighting non-stop for 6 years, developed a secondary cancer, but still she held on to that beautiful smile of hers. Once Talia the secondary cancer, I knew what the outcome was going to be, but that didn’t stop me for begging for things to turn out differently for her. I found out via social media today that things aren’t looking so great in terms of Talia getting her “miracle.” I want to scream from the rooftops, “WHY NOT? WHEN IS ENOUGH GOING TO BE ENOUGH? HOW MUCH OF THESE KIDS BLOOD HAS TO BE SHED?” My screaming from the rooftops really just leaves me bloody exhausted and drowning in a pool of my tears on the floor. When is this going to get better? When will these kids get an actual real fighting chance? You didn’t deserve this, Talia doesn’t deserve this, none of these babies, toddlers, kids, deserve this, yet it keeps on happening over and over and over all while people continue to look the other way. Ellen DeGeneres had Talia on her show and I am praying that she will do the right thing and help Talia continue to be a voice for childhood cancer.

I’m sad and scared for her parent’s. I made your brothers say a prayer tonight for Talia which really consisted of us all talking to you, Ronan. We asked you to let Talia just fall asleep the way you did. We asked you to help take away her pain. Liam asked you to help her to get to her happy place where she no longer will be sick. Quinn covered up his face and I watched as his eyes filled with tears and he buried his little head into his pillow. This is our life now. A life full of suffering for not only our own pain, bur for the pain of others as well. I know I will be falling asleep with tears on my pillow not only for you, but for Talia too. It shouldn’t be this way, Ronan and I will forever be sorry for everything.

I’m going to go little man. Your little Poppy is stirring. She must hear my tears and know that I need to snuggle into her. Please take good care of Talia and show her the ropes.

I miss you. I love you. I hope you are safe.

xoxo

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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