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.

xoxo

New York Miss Macy takes on Coronado!!! Watch out Navy Seal boys!

Ronan. I’m trying to remain calm and quiet tonight. Today was hard. WTF is going on? I thought things were supposed to be getting easier as time goes on. Time heals all wounds. Who is the dumb ass that made that up? All time is doing is taking me further and further away from you and this time I had with you on this earth. It just makes me miss you more. I don’t even really remember today, except it was another one of those longest days ever. I woke up late with Liam and Quinn. Made them breakfast, talked to you Daddy about some things, cried, all while Quinn sat and wouldn’t leave my side. UGH. You know how much I love your brother, but sometimes, I just need my space whether it be when I’m on a phone call or just trying to freaking go pee. Your brother refuses to leave my side. This breaks my heart, as I know the reason why and I tried to calmly talk to him about privacy today as he grabbed my phone to read a text message out loud that Macy had sent me. Little eyes! I handled the situation appropriately I guess, but I think he got his feelings hurt. After spending the past 3 days with your brothers, I’ll bet you Quinn has been away from me for maybe 10 minutes. I love how much he loves me. It’s as if he is trying to give me a double overload of love because you are gone and he knows I need it and he needs it too. But fuck. I do need my space every once in a while. Thank GOD for NY Miss Macy arriving tomorrow. Not only am I in desperate need of how she makes me laugh like no other, but she can take some of the pressure from this Quinn situation. Mama needs a break and a very long run to get out some of this restlessness.

Today, simply just sucked. Bad day. Bad headache. Bad mood. Bad everything. You know you are going to have a bad day when you wake up to the ocean and sun shinning and you feel pissed off. Liam and Quinn were still tired from yesterday and last night. We attempted to go down to the beach and pool for a while, but they were soon board as none of us were feeling it. Liam was tired, Quinn was tired, and my headache was out of control. We came back upstairs so I could make them lunch. I knew it was going to be one of those lazy bum beach days. Liam plopped himself in front of the T.V. and Quinn said he wanted to take a nap and wanted me to lay down with him. I couldn’t tell him no. We snuggled up in bed together and he grabbed my hand to hold while he fell asleep. I just watched him and tried not to cry. Remember our naps together? Almost everyday we would take one, it was part of our little routine. I loved those napping days together so much. I dozed off with Quinn but my sleep was restless as it always is, especially without my Ambien. I don’t think it would be such a good idea to take that stuff in the middle of the day. I wrestled with my sleep, tried to be peaceful, but woke up angry at everything still. Quinn slept for a few hours. He was beat. I got up and took out my aggression on the laundry, dishes, and cleaning.

After Quinn woke up, we got ready and decided to go out to dinner. We went to Old Town for some Mexican Food. I shared Carnita’s with Quinn and Liam ate a huge thing of chicken nuggets and the homemade tortillas that they make at the restaurant. He of course, dipped them in his ketchup. Your brother and his eating habits…. I swear he could live off of ketchup alone. It was a nice dinner but as always it was a big reminder that you are not here. We used to take you to that restaurant all of the time and it was as if there was a video playing inside my head of the last time we had been there with you. It was all I could focus on as I tried to hold a conversation with Liam and Quinn. I did my best.

It has not even been 2 months since you left me and already I can feel myself panicking about what I am going to do in August when your brothers go back to school. I am now panicking even more because your daddy brought it up today. He knows I will go crazy if I don’t have something to stay focused on. You were my soul focus for 4 years. Now what, Ro? I am scared to death as I don’t have a plan at all. I like a plan so much but a part of me wants to rebel against this “plan,” and just see what comes my way. Fuck the plan of life because I now know there are never any guarantees if you do have one. I had a plan with you. It was the most perfect plan and now look. I’m left alone, in a house, without you to take care of, while your brothers go back to school. I know I will figure something out, I have to. Otherwise, I know I will end up seriously doing something crazy like barricading myself in your room and never coming out.

I talked to my Bryson friend via text messaging tonight. Your spirits are so similar. He loves Star Wars, just like you. He is really passionate about living his life full of fun; just as you were. He has crazy pictures on his FB wall of the skiing he does, jumping off cliffs, etc….. That is so how you would have been. Nothing in life would have stopped you and I know you would have been extra fearless especially when it came to things like skiing, surfing, cliff diving, etc….. It was just something you were born with. Bryson is this way too. The more I learn about him, the more I am finding out how much alike you really are. I don’t know what this means, but I am intrigued. He is a very sweet boy. He told me he thinks we met so he could help me heal. I just told him that is a big job for such a young kid. Way too much for him to take on. He has already helped me by what he did for me on the airplane. Sitting alone without you for the first time…. I very well could have lost it. He distracted me and let me tell him the beautiful story about you. I am so thankful for that. That first flight was going to be hard on me.

I’ll smile tonight thinking about how you used to always say, “Mama.” and I would go, “Yes.” and you would say, “You’re cute.” and I would go, “You’re the cutest!” and then we would start our wrestling tickle party telling each other that the other one was cuter. I loved that so much. It was so fun to be so silly with you. So simple.
Alright my baby. You know our conversation that we had tonight? The one where I stare at the pic of you on your iPad and I swear you are staring back at me. I kiss you and whisper what I need you to do, which is take me with you. I told you to tell whoever it is upstairs, that I need to be up there with you. I am you mom. I am the one who is supposed to be taking care of you! I am fine with leaving here. You make them make it happen for me, Ro. We belong together. Just you and me. Just like we always said. I know you can hear me. Make it happen because I can’t take this much longer. Ambien is kicking in. I miss you so much and although I still had so much to say tonight….I’m tired. I love you so much. I hope you are safe.

xoxo

Where’s Macy??? Where’s Ro????