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

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15 thoughts on “This is not how things should be, but this is how they are

  1. Kristina

    Maya, I share your anger. I haven’t lost a child. I am lucky. But I cannot deal with people so ignorant to believe that the prayer is gonna help or that there really are angels there in heaven with wings, flying above and an old man sitting in his throne, looking down on us. That is bull. I believe in soul and I believe that You and Ronan will always be connected. I believe that you will meet again in some way, shape or form. But I just don’t know.
    I am thankful for you, for all the crucial things you do, but also for this blog and for your honesty. For telling it how it is. People are so scared to admit how they feel, they come up with masks and excuses and cite moral codes and religions to justify their covering.
    I recently talked to a mother who lost her child a long time ago. She told me she wasn’t angry at all. She knew her son was an angel and she will see him in heaven. Like you said, maybe it’s her coping mechanism, but it made me fume!
    I have not missed a single post of yours. I think about your family all the time. I want to make a film for Ronan about Ronan and his life and how he lives in you and all of us. Please, email me if you are willing to talk about it.

  2. Ali Barnes

    you’re most definitely not the only one angry about all of this, Maya. Maybe you are the MOST angry, because you have every right to be, but we are all outraged as well. Outraged that there is not enough knowledge about this hideous disease out there. I had never heard of Neuroblastoma until I read this blog. Now I know about it, I see it everywhere. I believe in you, I believe in Ronan and I believe that at the very least, there will be better treatments for these kids available in the near future. I believe this so much that even though I am on the other side of the world and could support more local charities, I give my money to Ronan’s foundation. I believe that you and this fantastic group of supporters you have will be pivotal in changing the outcome for so many kids with these disease.

  3. Lieke Koevoets

    Dear Maya,

    so I recently started to read your blog and I made the mistake to read it (at work) in the morning. It mad me sad 😦 I don’t have kids, (to be honest I don’t really like kids only the cute ones who don’t cry) but still I agree with you NO mother or father should have to watch their kid die.
    I recently became an aunt for the first time! My brother became a dad for the first time of my lovely niece Lara. Lara is the cutest thing ever but she has Down Syndrome, which of course was a huge blow to my brother and sister in law. And what I hate most about this not that she is different, because she is but she is also unique, no it is the fact that for some reason people are less excited about her as they would be with other baby’s. For some reason people feel sorry for you and that makes me feel sad. She is different and yes her parents will have a long tough road ahead full of hospital visits and tests but still she is my little and first niece and I am so proud to be her aunt (I hope to become her favorite auntie). Anyways, this does not compare to your loss and everything you feel but I do think you really inspire people and your an example of how to fight in life.

    Lieke (I live in the Netherlands so you also have an international audience)

  4. Jenn

    I don’t think I could agree with you more! I would be the same angry person you are about this horrific disease and for what it did to your beautiful boy! I told my husband that if something happened to one our boys to just send me to the pych ward and throw away the key! I would not be able to function and the thought of my child in heaven would kill me! Yeah…it’s a nice thought and I’m happy for people who can be happy with that thought, but I wouldn’t ever be happy with that either. Selfish…I don’t think so. Keep changing the world…you’re anger is making a difference. I couldn’t do what you are doing, I don’t think most people could. Ronan brings tears to my eyes…it’s not fair. Keep strong…keep fighting. I am behind you all the way.

  5. Melissa v

    Sending you love and strength to keep on fighting this ugly nasty evil beast. I am so sorry you are not running with Ron and some hot seals every morning. I am sorry Liam, Quinn, and Woody have lost their brightest star… For all of their pain and sadness. I know you will remain focused on kicking cancers ass, and I know the hurry you are in to do so, but it is ok to take whatever time you need to fuck with inferno fuckwad bob too. He deserves his own beat down.

  6. Jaime H.

    I’m sorry Maya! I wish Ronan was still here! And I agree, prayer alone without any action or work won’t cut it! I do think of you and your family and pray for you all every day! Keep on fighting Maya! You have a ton of support behind you! Love to you today! xoxo

  7. bee

    I’m sorry! You are making a huge difference. It is that fire and passion for Ronan that allows you to do so much! From what you say about Ronan he was not a calm follow the rules kind of guy so why in the world would his kick-ass mama be that way? You keep on getting pissed because cancer is a B*itch and nobody should be calm when fighting that beast. We all need to put on our game face and kick it’s ass…cancer does not respond to polite people you gotta beat the sh*it out of it for it to get the point that it can not keep taking these sweet and awesome kids. You truly inspire me!

  8. Dorene Plampin

    Maya, I remember when my younger sister was shot to death in the wilds of Alaska. It was hard enough for me, but to watch my mother go through the grief was so intense I didn’t know what to say or do. Having your husband be so loving and thoughtful must bring you some comfort. My father died suddenly when I was 16 so mother didn’t have that support. Please know I read your blog and feel so much for you .
    Sending you love, D

  9. Jennifer Benedict

    I will never say it is a blessing a child is gone or that they “have earned their wings” they died because cancer killed them because America failed them their government failed them, those to ignorant to see and to fight for them failed them. These babies had no choice in weather to live or die so I will never believe they were excited about dying after so much suffering, they FOUGHT to live!!! Princess broke my heart as they all do and after seeing all the children I follow die I Just can’t go along with the angel wings and prayers Because i feel it’s bullshit, this is a man made disease and must be fought!!! Just my thoughts…

  10. Cheryl DiMatteo

    You are so truly justified in being angry and are right with your fact that prayer is not the only answer in finding a cure for this deadly, very cruel disease. However, if we do not have faith in the Good Lord, we have nothing as he is the one who has given us all life in the first place He is responsible for giving you your beautiful baby boy. Why he called him home so early will never be known but believe it was for a better purpose than he had for him on earth. As his mother I know this is unacceptable to you as it would be to any mother but I do know if you put your faith and trust in the Heavenly Father he will help you through your darkest days. Faith carries us a long way in this life.

  11. nayelith moroyoqui

    Its crazy to me how googling neuroblastoma can lead me to you.. i read through your bloggs and i feel like i can breathe.
    My son joel lost his life, he was 18 months when we found out he had neuroblastoma. My son fought his cancer and he was one of the 30% who beat neuroblastoma. Sadly his cause of death was due to his radiation.
    Im reading through all your post and i get you. Im also angry and upset. I fill exactly like you feel! I see the picture of the broken bleeding heart and thats how my heart fills. I dont know you but i feel like i do. I glad i was able to read your post. God Bless:)

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