Maya decides not to die.

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

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

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

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

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

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

xoxo

You and Ben. Ben and You.

Ronan. I have had so much go on the past couple of days but all I can think about is Ben died today. Those are the words that jolted me out of my Ambien induced coma last night at 12:11 a.m. I was asleep, in Quinn’s bed and you know once I take my Ambien, World War II could be going on in our house and I wouldn’t know it. Last night, I was ripped from my sleep and straight up in my bed, not knowing why. I reached for my phone because something just felt not right. That’s when I read the words, “Ben died today.” My stomach dropped. I immediately sent your Mr. Sparkly Eyes a text that simply said, Ben died. Fuck. Fuc (which is our code word for Fuck You Cancer) I got up, I kind of remember going into our bedroom and just saying out loud to your Daddy, “Ben died. FUCK!” I don’t remember what happened next except my face was very wet. I woke up in the morning, back in Quinn’s bed praying that I had only dreamed of Ben dying. I grabbed my phone and read the words, once again. No. No. No. No. Not Ben. I got up, showered, got your brothers up as we were running late. I was in the middle of making lunches. Your brothers came out to grab some breakfast. Your Quinny was complaining about the shorts your daddy had picked out for him to wear to school. They were just normal, corduroy shorts and I told him how handsome he looked. He started to say how he didn’t want to wear them, how it wasn’t fair. I stopped in the middle of making his sandwich, looked at him and I said, “Ben died. Ben died and you are going to complain about the shorts you are wearing? You are not allowed to do that.” Was this too harsh for an 8-year-old? I don’t fucking think so. It’s real life. It’s real life where I’m sorry but we don’t get to complain about things that don’t fucking matter anymore. There are bigger problems in life. I refuse to let your brothers, forget that. I refuse to let them grow up in a world where they are ungrateful that they are alive and get to wear stupid shorts that look nice when all they want to do is wear Nike Basketball shorts. It’s not happening when you and Ben would have given anything to wear nice corduroy shorts.

So Ro. I knew that day I saw Ben at America’s Taco Shop that it was really you that I was seeing. It was not just a coincidence. It was a very well orchestrated plan thought out by you. I knew that day, that Ben probably was not going to be around much longer. I knew that this was your way of telling me this, but it was also your way of telling me that you were going to take care of him. I knew this then, but I know this now for a fact. I have not told his mama this. I talked to her today. I wanted to tell her this, but I could not find the words. I was the one, crying on the end of the phone while I listened to her tell me that she was fine. How she was cleaning the house, but she was fine. What do you say to that? I did the only thing I know how to do. I simply said, “Barb. You are not fine. You are in shock. You are having a physical reaction to Ben being gone and your mind and your body are trying to protect you.” She said she wasn’t sure, that she really felt fine. The tears slid down my cheeks. “O.k.,” I said. “Please just know that I am here when the shock wears off. I’m much further down this road, so I kind of get it. Not entirely, but kind of.” All I wanted to do was reach through the phone and wrap my arms around her. All I wanted to do was to bring Ben back so she wouldn’t have to be fine. I felt so useless and so helpless. I tried to think back to what happened right after I lost you. I don’t remember much but I think I wrote to you. I’m sure there were so many people out there going, “Has she LOST her mind?!! Who writes a blog post, not even 24 hours after their child dies?!!!” I guess that was my version of being fine. Everybody deals with things differently. There is no right answer. You know what else, makes me love Ben’s mom even more? The fact that when she did do her update (I’m assuming it was her) that she simply titled it, “Ben died yesterday.” That was very Maya like if I do say so myself. Regardless if they are religious or not, it was so fucking refreshing not to read, “HALLELUJAH! Ben is with our Lord Jesus Christ! We are so happy!” The next caring bridge that I have to read, that says something like that, I’m going to punch my fucking computer screen. I don’t care how much you believe in God…. stop fucking lying. No parent is happy and rejoicing that their child is dead. Let’s call a spade and fucking spade. I don’t care if God is your fucking BFF. The fact of the matter is your child is gone and let’s just be honest for .2 seconds and be honest about it like Ben’s mom. Ben died. That says enough. That says everything and more. It is enough. Just let it be enough and nobody needs to scream Hallelujah about it.

I know I worry about you being safe, Ronan. But I don’t worry about Ben, because I know he is with you. Does that make sense? I may not know that you are safe, but I know you are now watching after your little buddy and I know that you two are together and so I know you have a little friend to pal around with. I pictured you two, today playing with each other and running all around. I actually pictured you both on this earth and how you would have been great friends. You don’t get to be here together so you being somewhere else, will have to do. It was easy for me to picture the two of you, together which is weird because we didn’t even know Ben that well. We only had a few interactions with him but they were always one’s that I could not forget. I never could get his little mischievous smile, out of my mind. It was so much like yours.

Words failed me today with Ben’s mom. There are no words that could ever be good enough. I’m so sorry was all I could really do. If I had to tell her some things, it would be this.

This should not have happened. It should not have and you don’t ever have to be o.k. with this. You won’t ever, “get better,” or get over this. And you should not. He was your Ben. Your one and only sweet Ben and this just proves that life is not fucking fair. Nobody will ever have a Ben like yours. This is o.k. You are the only one that was special enough to have him. People will try to understand but they won’t. This is o.k. too. He is your best kept little secret. Your love is your best kept little secret. The best kept little secret that nobody can take away from you because it lives closest to your heart and your heart, ONLY. Nobody else’s. Ben knows how much you loved him. Ben knows you would have traded your life for his in an instant but it was not your choice. You will learn to accept this and let his love, guide you for the rest of your life. Don’t question your heart. Ever. With anything you do anymore. Even if that just means deciding what to cook for dinner. Everything will eventually mean so much more than it did before because Ben will be behind everything you do. Not that he wasn’t already before, but now his light will become that much stronger even on your darkest of days when you don’t want to get out of bed. Don’t fight this. Stay in bed and have lots of dark days. He is worth every single tear. He is worth your shattered, broken heart. He will help you put it back together when it is time. There is no time frame for this. Don’t listen when you hear this gets easier as time goes on. Time is irrelevant. Time means nothing. Time has stopped. You were his teacher for an amount of time, that was cut way too short. Let him be your teacher now. I know he has so much he wants to teach you. I know he has so much he is going to teach you. He will keep you safe. I promise. I’m so sorry. I’m so sorry and I wish I could bring him back. I can’t so Ro will watch over him. I don’t believe in much these days, but I believe in this. I don’t just believe in this, I know this. I love you. I love Ben. I love the love you two have for one another. Not had. HAVE. You will always have that. Always.

Alright Ro baby. It’s been a long day full of too many tears and homemade potato latkes. I peeled the fuck out of the potatoes today while I cried for you, me, our family, Ben, and Ben’s family. I made some pretty kick ass potato latkes. You would have loved them. I’m sorry that cancer is an asshole, therefore you couldn’t be here to eat them. I’m sorry. I’m sad. I love you and I hope you are safe. Thanks for taking good care of Ben. I love you both to the moon and back. Sweet dreams, baby doll.

xoxo