This is not how things should be, but this is how they are

Ronan. Today, June 11-17th is International Neuroblastoma Week. I’m not sure what that really means, besides trying to make people everywhere, aware of this deadly disease that nobody is talking about. For me, it just makes me want to throw up. I’m aware alright. I’m aware in the worst way possible. I’ve got your urn sitting right next to me, to prove it. Today, I watched the Navy Seals do their morning run on the beach like they do every morning. Wasn’t it just a few years ago, you and I, were running on the beach with them? I would throw you in the jogging stroller and off we would go in the early morning, to run with them. Now, I just watched them from the window of my room and my head started spinning thinking of how much has changed in such a short amount of time.

I don’t understand a lot of things in life now and that makes me angry. Thanks to the power of social media, and the world that I now live in, I swear I am getting updates everyday of kids who are dying from this disease, over and over again. I got one yesterday. I simply read, “Princess such and such won the victory over cancer! She is cancer free!” Tears welled up in my eyes. Finally! Someone who has survived this disease! I went on to read the rest of the post. Princess did not survive this disease. Princess died. WTF. WTF?!?!?! What is going on in the world, that people are not more angry that these kids are dying? Why are we making it acceptable by using the terms, “She was so excited, about earning her angel wings and flying up in heaven.” I’m pretty sure a six-year-old girl, is not excited about dying. I’m pretty sure she is scared as FUCK. I am scared as fuck for her and she was not even my child. So, what is the right answer? I don’t have it. I don’t know what I would have done if you had known what it is, that was happening to you. I don’t know how a parent lives with that. Maybe they cannot which is why they choose to turn this all over, to someone else. Maybe they are so beaten down, broken, and rightfully so, that they just cannot choose to think of things as any other way. I don’t know that I could have lived with knowing that you knew, exactly what it was, that was happening to you. I think you just thought you were getting your sleepy medicine, and you were going to wake back up again, the way you always did.

Sometimes, I feel like I am I the only one out there who is angry about this? It seems like I am the only one in the world, who is angry. It seems like I am the only one out there who is stopping to take a look around and saying, “No. It is not o.k. that my child is not here. I am not going to be o.k. and just place this in the hands of God and move on because Ronan is where he should be and now, so let’s have a party and celebrate because Ronan is an angel.” FUCK THAT SHIT TO BLOODY HELL. I get that people need their faith and their religion to help them get through things in life. Fine. So be it. But I am not here, to get through life anymore. I am here to do something with my life that means more to me than just getting through and placing this in someone else’s hands, to handle. Ummm. No. Ronan was MY son. Ronan was MY everything. Ronan deserved to be with ME and NOBODY else. I am not just handing him off, to somebody else and going to be alright with this. Fuck off for that. To me, that would make me a bad mama to him. I am still his mom. So that means, I still get to say what it is, that I will do for him, even without him being here. And if that means being angry and not accepting that he is off, flying so high in the sky above me, while riding on unicorns and being happy, then that is my choice. I know my son. He is the other half of my soul. I know there is no place he would rather be, than here with me. And anybody else that says otherwise, is either so ignorantly blind that they cannot see straight or they are just in serious denial because they cannot even fathom what life would be like, to lose one of their children.

I sent your Sparkly one of my ranting texts the other day. Do you know what I told him?? I told him this, “I would like to know when people are going to realize that praying, is not going to cure cancer. It’s a nice thought and I understand it’s how most people cope/deal, but it’s a shame. Cancer is not going to get cured, by praying. It’s going to get cured by people like me who will stop at nothing to fight, find resources, educate themselves, think outside the box and who are angry enough, to make a difference. I am not going to hide behind my prayers. Nothing will get done this way. EVER. Praying is not the freaking answer.”

That is my truth. I am not a doctor. I am not a scientist. I don’t pretend to even come close to being able to understand the complexities of this disease. What I am, is your mama. What I am is a mama who is left here with so much fire, passion, and anger for your precious life that was stolen from us, that I am not willing to ever slink back and come to peace with what killed you. I am haunted every single day with two images of you. One being the most beautiful little boy, who ever lived and the other being the way, you looked, right before you died. It is the image of you dying, that haunts me the most and brings me to my knees. This is why, I will never be o.k. with, “Oh, he is pain free now. He is an angel up in heaven. I am just so happy about that.” This is why I will not stop fighting for you and this disease, until I am either dead or there is a cure or a better chance for survival, with less toxic treatments. No mama deserves to watch her child die. And if they have to, because I now know this world of childhood cancer and how it is everywhere, they should be taken care of better. They should not just be tossed out into the streets and sent on their merry way, the way we were.

This is what I hate the most, besides everything. You are gone. Your daddy is in Phoenix. Liam is sleeping in his bed, in the other room. Quinn is of course, snuggled up with me. We are all apart. This is not how things should be. But it is, how things are. I have two choices. I give in. I throw in the towel. I quit because sometimes I am so tired of this life that I just cannot take it. But you know what quitting means, Ronan? It means I lose EVERYTHING. Not just you, but it all. I don’t want to lose it all. At one point, I may have thought I just didn’t care. I do care which is why I will continue to stay here and fight, not give up and not give in. I know I am not capable of doing all of this on my own anymore. I think for a very long time, I did a lot of this on my own. I don’t want to anymore. It’s all too much to handle, by myself. I am thankful for the one person who never lost sight of me, when I lost sight of myself for a very long time. The one person, who never stopped loving me, even when I stopped loving myself. The one person in the world, who never turned his back on me now matter how hard I pushed away. I quite simply, don’t know what I would do without that daddy of yours. I am most sorry to him, for all of this, because he only deserved to have the best life possible because he is the best man that there ever was and ever will be. I hate that this happened to him so much that some days I think the pain from that alone, will destroy me. That’s a hard thing to live with. It’s a hard thing to watch, see and feel. On top of everything else.

This is all for tonight. I’m too tired. Too sad. And I miss you so much. I love you. I hope you are safe. I am so sorry for everything.