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 must have been a beautiful baby

Ronan’s counts are still rising. He had a great day. I came to the hospital this afternoon with Liam and Quinn. The 9th floor blocked off the playroom for us so Ronan could play with his brothers. We stayed in there for about 3 hours and the boys played their little hearts out. The twins then left with Woody to go back to the RMH so Woody could shower and get some work done. I stayed with Ro for the rest of the day and evening. We played out of our room most of the day, and walked the halls shooting people and playing in the playroom. Ronan took a red marker today and colored all of his arms and said it was blood from his battles. Pretty much anything goes in the hospital as far as I’m concerned as long as he is having fun. I gave him a good bath afterwords in a little tub of water on the floor. He’s all clean now and just fell asleep as he didn’t nap today. Woody is on his way back here to stay the night so I can have some time with L and Q.

We have some scans set for Friday and Ronan will be discharged after that. They keep changing the set of scans we are having but as of now, I believe it’s the CT and Bone Marrow on Friday and the MIBG next week. That is the last I heard from one of the doctors earlier today, but that could always change. I asked New York Miss Macy if she could take Liam and Quinn for a few hours on Friday so they don’t have to sit in the hospital with us and wait. She happily agreed and I know the boys are going to over the moon about spending some time with her. It will be so helpful to us to have them off somewhere having fun, rather than sitting in a hospital.

So anybody that knows me, knows that I have been obsessed with taking pictures my entire life. Just a hobby that brings me much happiness and always has. Taking pictures of my kids is definitely my favorite subject. I have over 11,000 pics on my iphoto… so to say I’m obsessed is an understatement. All of my pictures on my iphoto are now defined to me as, this was our life before Ronan had cancer and this is now our life after. Sad but true.  Going back and looking at pictures before all of this is painful to me and makes me break down in tears. Every picture of Ronan before all of this makes me sick to my stomach as I would have never in my life have imagined this happening to him. He was such a gorgeous baby…. how can he now have cancer???  I sit and look at all of our pictures before all of this and we were such a happy family. We have so many beautiful memories and we were so blessed. I get so angry that all of that has been taken away and we have to work so hard to now find our happiness in the hardest of times. Today, as I was pushing Ronan’s asspole around the halls as well as trying to carry his gun, Star Wars guys, and his Crayola markers that he called his “Missles,” I was overwhelmed with anger. I caught a glimpse of him walking down the hall as I followed behind and he almost tripped over all of his lines. He looked back and goes, “Mom, I can’t carry my tubies and my guns.” I wanted to punch a freaking wall. It makes me sick that my 3-year-old has to worry about tripping over his lines. I am also pissed because Ronan has his 4th Birthday coming up and all I wanted was for him to be home. Instead, we will have to celebrate it in the hospital. All he wants to do is go back to Phoenix and he tells me at least once a day that he is never going to get to go back home and be with his brothers. I tell him that is not true, but no matter how much convincing I try to do, he argues with me and does not believe me. In his head, he thinks we are going to stay in New York forever and he thinks he is never going home. So much for a little boy to try to understand. Too much for a little boy to try to understand. As happy as he is, I also know that he is worried and sad and there is nothing I can do to take that away no matter how hard I try. That is my venting for the evening. I feel a little better now. Not really, but I am trying to convince my self otherwise.

I left the hospital late tonight and came back to RMH with Liam and Quinn. We went down to the common area and worked on some of their homework that their wonderful teacher, Mrs. Martin sent with them. I cannot tell you how good it felt to sit and help my boys with their homework, like a normal mom. After we worked on homework for about 30 minutes, we played the board game Operation. I have not played that game since I was a little girl. We had so much fun playing it together tonight. We are now all snug in bed and Liam and Quinn are watching CSI. A bit mature for them, but they both say they love it. My 7 year olds are now going on 30….. They are growing up way too fast:( Makes me sad.

Tomorrow is a new day. One more day closer to getting Ronan out of the hospital. Cannot wait to see Miss Macy tomorrow. Cannot wait until Friday, when we can bust Ro out of there and all be together outside of Sloan. Sweet dreams, my friends. Thank you for checking in with us. Have a beautiful day tomorrow.

xoxo

He is my sun, my stars, my moon above

A bloody nose led us to the clinic for platelets earlier today. As soon as we were ready to head home, Sharon came over to flush out Ronan’s tubes and the saline started squirting out the side. Not a good thing. He had a tiny hole in the line that leads to his broviac which could cause a major infection to go into his system. That got us booted out of the clinic and sent over to the ER to have his tube replaced. It was no big deal; they just clasped  off the top of his tube and replace the bottom where it was broken. Now, we have to stay in the ER so he can get a dose of antibiotics as a preventive to any kind of infection that may have started to grow. He has not been happy to be here. Lots of yelling and screaming that he wants to go home. Can’t blame him. The ER sucks. And not to mention, playing Christmas music in the ER is just wrong.  He is asleep now… Thankfully. But as always, as he sleeps away and I sit for hours holding him; I have way too much time to think.

Do you know what it’s like to cry tears because your baby has cancer? Do you know what it’s like to even fathom the idea of losing your child? I do. Every second of the day I think about Ronan. He is the love of my life; the last baby that we decided to have. He completes our family. He was the perfect ending to all of us. He makes us whole and all around we are better people because of this one little boy. Sometimes, I sit and think about life without him and it makes me sick to my stomach. And for all of you out there who are going to tell me that I shouldn’t be thinking that way; too bad. It is a part of this, as sick as it is. I can already tell you life without my baby would be HELL. I am so sad for any parent that has to live through something like that. It is not right and it is not fair.

I started the day off today by crying, and I’m ending the day the same way. I’ve been sitting here in the ER for 3 hours now staring at the wall saying over and over in my head, “Please don’t take my baby away.” I’ll bet you I’ve said this a thousand times tonight. It’s all I can do right now. If I say it enough, it has to work. A life without Ronan, would be no life at all.

I, on the other hand, got not a thing done  today in regards to our upcoming trip. Tomorrow will be better, yes? It has to be.