Teddy, Ronan and Petty Bullshit


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Ronan. I’ve spent the past two days, doing exactly what it is that I love doing. Being so insanely busy with all things you and this pediatric cancer world. My favorite days consist of being surrounded by the most brilliant minds who eat, sleep and breathe Neuroblastoma in the most beautiful way possible. Dr. Sholler was in town so I soaked up as much time as I could with her. We had a wonderful dinner with some wonderful people who are so passionate about our mission and what it is we are trying to achieve. People who want to help us get things done and who know that things need to change in a very big way because the old barbaric ways of dealing with pediatric cancer, are just not right. I spent the past 2 days talking about our ideas and picking the brains of some of the most intelligent people out there, working in this world. I spent the past couple of days, feeling like I could breathe again. It’s the only world I do really, really well in. It’s really the only world I want to be in. I don’t belong in the normal world anymore. I’ve known that for a very long time.

So, the past 2 days I have been slammed busy with meetings, dinners, breakfasts, and all things childhood cancer. Our little plan, is slowly getting some legs. I want to do this the right way, therefore everything has to be thought out meticulously. That is so hard to do, when all I want to do is run, run, run because kids are dying and not being treated the right way and it is so very hard to sit back and watch. I feel so helpless but I just have to remember, things like this take time and things like this, do not happen overnight. But it does not stop my heart from breaking, over and over again. I know my heart will continue to break over and over again, for the rest of my life. It’s o.k. though. It could never be fixed again after losing you. I am o.k. with living with a broken heart. You are so very much worth this pain. It just reminds me of how much I love you.

I cannot shout from the rooftops loud enough of how much I love Dr. Sholler. How much I believe in her and what she is doing. I’ve said it before and I’ll say it again. She will be the one to change Neuroblastoma and I will do whatever I can, to help support her. I’ve never in my life met a more brilliant woman who is not only a bloody genius, but so compassionate as well. Every single child matters to her. They are not just numbers or statistics. She has no ego at all. The no ego things is so very rare in this world where many doctors seem to often develop a God complex. She is a breath of fresh air and I will forever be so sad, that we didn’t get you to her in time. I don’t know if this would have changed your outcome or not, but it’s the not knowing that I will always regret. Add it to my list, baby doll.

On top of being very, very busy… I’ve been dealing with just general everyday noise of the outside world that I don’t have much of a tolerance for anymore. This is the general reason that I no longer troll Facebook like I used to, before you were sick. I can’t take seeing the ridiculous amount of stupid updates, drama, or people complaining. Every time something like this pops up, I just want to punch my computer screen. Save the drama, for your mama. If you only knew how lucky you were, to have your stupid drama, you wouldn’t make it drama, dumbasses. I came home tonight, trying to ignore the static of the world. I came home and saw that I had about 50 Facebook notifications. As soon as I logged on, I saw this from Teddy’s page. The only page I’m really interested in right now.

“Dear friends of Jim, Clarence and Leo,

We invite you to gather in Jim and Clarence’s backyard for a candlelight vigil tomorrow evening, Dec 12 from 6pm to show them our love and support.

Jim and Clarence are unable to accept visitors at this time and ask for your understanding. They will enjoy the warmth and love of their friends coming together in this way and Teddy will see our light though their bedroom window.

This will be a peaceful gathering with a reflective mood.

When: 6pm, Wednesday, December 12
Where: Backyard
Please bring a candle and dress warmly as it can get very cold at night.

I felt sick when I read this, but also felt a wave of warmth wash over me in a way that I’m not used to anymore. What a thoughtful and simple thing to do. The thought of Teddy, seeing all the lights shine through, made me happy and sad all at the same time. I wish I could be there, but since I cannot, I will be lighting a candle here instead. I would love to ask you all to do the same. Just take tomorrow night to think about Teddy and put away all the petty bullshit that we seem to get so caught up in. Because at the end of the day, if you are healthy and your family is healthy, then all other problems can be fixed, right??? Seems pretty fucking logical to me. Teddy’s problem cannot be fixed. Ronan, you are dead. You, my son, are fucking DEAD. I don’t get a chance to sit back and reflect on my “problems,” that can be fixed. I cannot fix the death of you. So what do I get to do, Ronan? I get to block out the noise and focus on helping others and trying to fix this world for the rest of my life. I myself tend to get caught up in the drama and tonight, I got a very big reminder that I just cannot do it. I won’t do it. I’ve got bigger fish to fry, little one. I know the things that matter most in life and sometimes for me, it is just surviving the day. Sometimes, it is just trying to stay alive, form a coherent thought or put one foot in front of the other. Other days, like today, it is called kicking cancer’s ass. I like those days, the best.
Alright, little one. I’ve got a raging headache. Sleep has not been my friend the past 2 nights. I am hoping to make it my friend, tonight. I need a break from the tossing and turning and freaking out about you not being in your little bed. It is always perfectly made in the most taunting way. Thanks a lot, asshole cancer. You should be here, messing it up and tucked away safe and sound in it. I’m so sorry you are not.
I miss you. I love you. I hope you are safe. Keep an eye on our Teddy boy. He needs it. G’nite Ro baby. Sweet dreams.
xoxo
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20 thoughts on “Teddy, Ronan and Petty Bullshit

  1. chemoanddonuts

    I only started following you just this year. My Sam has Leukemia, and despite the fact that he is doing well, I am petrified of him leaving me, dying…….our clinic lost a sweet little girl to Neuroblastoma in May, and another little girl from our clinic is really struggling lately, also Neuroblastoma. I have also started a blog….chemoanddonuts on WordPress. I can only hope that I make an impact like you have in this crazy world of pediatric cancer….I giggled a little when you wrote save the drama for your mama….my kids and I say that all the time….I get really fucking fed up when I see stupid shit on FB. Many hugs to you Maya….hang in there..xo

    1. Ves

      Wow! I heard about it on twitter, but not really understood what they were talking about until I read this article. Thank you for posting the link. This is amazing and hopefully will be the answer to saving lives! God bless!

  2. Ali B

    The candlelight vigil is the most beautiful idea in the most tragic of circumstances. I hope everyone takes part and takes the time to remember that life is a gift and we should be grateful for the blessings we are given – no matter how big or small. Keep fighting the good fight, mama.

  3. kaileecrawford

    Maya, if anyone ever tries to tell you that you can’t do something… Take them down, just knock them right out. I have never seen anyone’s determined as you are and because of that, I know you can do anything and you WILL. I hope to do the same one day, right by your side, kicking cancer’s ass…Putting an end to this absolute madness and saving the amazing kids who NEVER, in a billion years, deserve to go through it.. It’s not right and it needs to end today. I’ll definitely be thinking of Teddy tomorrow, and of course Ronan (I just typed R and my phone auto inserted Ronan… Hmm) though I think of him, and you, everyday. You’re the biggest inspiration, and kids like Ronan, Taylor Love, and Talia Castellano (2 other NB fighters) are my motivation, my reasons to push through and study hard and one day become (hopefully) a really great nurse to help kids like them beat cancer for a change. So even though you probably don’t read these… Thank you, for pouring your heart out and letting us into your world, you’re beyond amazing. ❤

  4. Jen

    Dear Maya,
    I will be lighting a candle with you tomorrow night. What an incredibly lovely thing to do in show of support.
    Hang in there ladyfriend. You can move mountains.
    Hugs,
    Jen

  5. Kim

    Thank you for doing these things Maya. I have a grief blog, I know it’s not much but there’s pictures and stuff and I see you put a lot of the ones I have on my blog on here. I don’t know if it will help you at all but I’ll give you the link. I will light a candle for Teddy, and as usual keep you and Ro in my thoughts always. ❤ Keep being amazing.

  6. kbosson

    I will keep Teddy in my thoughts, and you and Ro in them as well as I always do. I have a grief blog, I don’t know if it will help you. I feel helpless too, sometimes running that is all I can do. It is pictures mostly, a lot of the kind you put before your posts. I will leave the link for you. Keep doing what you are doing, you’re wonderful. Strength like yours is rare, and the people you’ve come across seem to be too.

  7. Kari dean

    I will light a candle for Teddy and all kiddos fighting this terrible fight. Hugs – and yes fb posts are ridiculous on complaints of petty bill shit!

  8. Hannah

    Maya…. you, Ronan and your family will be in our hearts as well tomorrow. While we join together for Teddy we also honor all of the brave kids that cancer has hurt. No family should know this loss and no kid should live with the battle scars of the treatments. We light a candle, we light a flame, we ignite a fire for change… we light up the world to give our kids a fighting chance – we’re in this fight with you Maya. This light is for you and Ronan too. xoxo Hannah.

  9. Vanessa

    I will light a candle tonight at 6pm Germany time. not even close to the same time y’all will, but I think that doesn’t matter. xo

  10. Ana Espinoza

    You `re rocking Maya. The little ones need more people like you. Please don`t stop. You`re making a difference being a role model. In Costa Rica,Central America tonight is gonna be a candle burning and a pray for Teddy and for Ronan and for You…

  11. elisavanarnam

    You are amazing Maya. You are changing the world. You are in my thoughts and prayers every day. Hang in there girl.

  12. Donna Tine

    thinking of Teddy and saying a prayer for him and his family – knowing Ronan will be watching over him. I love to hear how hard you are working to kick cancer’s butt – and that you are working with so many wonderful people trying to do the same. So many incredibly strong momma’s out there are fighting to make a difference – and you are!!! You’re raising awareness, raising $$$ and now we just have to make sure the researchers and the doctors are getting what they need to improve treatments, find the causes and educate us how to protect ourselves and our children. Thank you for all that you are doing. I know it is hard but it matters so very much. Wishing you peace always. Thinking of your beautiful Ronan and hoping he’s up in heaven somewhere being a healthy and happy kid – of course I’d rather he was here with you, but since that cannot be, I’d like to think he’s there spreading light and love.

  13. RobininHouston

    Thank you for sharing, Maya. I, too, will light a candle for Teddy and his parents. I will also light a candle for you and Ronan. For the love that remains.

  14. Chloe

    After reading your blog for the past year or so, I’m so with you on the petty bullshit! But as you are, I’m trying to make that more of a “don’t get caught up in the little things, appreciate the good things and fight the bad things” kind of attitude rather than a “f*ck everything” kind of attitude. Will definitely light a candle tonight for Teddy and put it right next to the one I light for Ronan! Love you so much, your such a kiss ass mama. :)xox

  15. Glenda

    Romama,

    You’re romazing! Keep doing what you’re doing! You have your RoLovies and Maya’s Mafia behind you. FUCancer!!!

    Thinking of you and Rockstar Ronan

    RoLove Always… xo

  16. Kalyn

    I will light a candle tonight at six PM. I’ve been following sweet Teddy’s story as well and I cannot think of anything better than letting Teddy see those lights of care.
    Thank you for doing what you’re doing. You’re one badass mama.

  17. Kodiak My Little Grizzly

    Time heals only physical wounds but leaves scars…. emotional wounds do not heal… It only give you more time to figure out a way to cope… I think it’s a phrase people come up with to disconnect from feeling bad and helping others… just like “kids are resilient” No they are not… they grow up and end up having issues and having to cope and relive the awful things they endured. Thank you for calling out the “crap” people say!!!

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