Cancer is a whore. My friend, Robyn, told me so.


 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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8 Comments

  1. Glenda

     /  July 19, 2012

    Thinking of you RoMama!
    Love the preschool picture. Romazing!!!
    Rockstar Ro looks like you as a baby!!!
    I see the resemblance! Two beautiful babies. Two beautiful souls. Ying&Yang!!
    XO

    Reply
  2. Jenn

     /  July 20, 2012

    Oh Maya, my heart hurts so badly for you. I thought of you all day yesterday and cried most of the day. I look at my kids and feel guilty that they are healthy, but am so thankful that they are ok. Then I think of how this could happen to me and it scares the shit out of me. I’ve been reading through your blog more and more. I started from the beginning yesterday and my god….my heart just hurts. It hurts so badly for you. Cancer is a whore, but you will beat this. YOU are amazing. Keep fighting. Much love sent to you as always. Always thinking of you and your beautiful family. Ro is beautiful, just like his mama.

    Reply
  3. Mom too

     /  July 20, 2012

    Having a child(ren) can be painful….for many reasons, in many ways. I have two, one that walks on earth and the other that is in that place where ever dead babies and children go. He left 40 years ago, last May. Still brings tears to my eyes as I sit here, running down my cheeks…… I know the if onlys, what ifs. But I never wished it was me bcuz I couldn’t stand the thought of not having the experience of my other son…. Maybe that is selfish, but I wouldn’t have missed being able to love him and see him become the man he has become. I guess that is what got me thru til now. Having his presence on earth and knowing I did the best I could at the time with/for him, for them both.
    xo <3 Ro, Liam, Quinn

    Reply
  4. Melissa V

     /  July 20, 2012

    Ronie and a new picture I have not seen, well that was more than my heart could take last night so there were lots of tears in this readers eyes…thank you for continuing to share your beautiful boy and your amazing soul with us, Maya. xoxo

    Reply
  5. Angela

     /  July 20, 2012

    It must be Ronan’s doing that we’ve had this crazy rain and thunderstorms in Washington lately – I can’t remember the last time summer stormed like this. Must be for you <3

    Reply
  6. Meshelle

     /  July 20, 2012

    I don’t reply much as I am more comfortable silently reading and taking in. I had the unfortunate pleasure of following Ezra’s story before learning about Ronan. Robyn and Kyle are just as amazing as you and Woody, and I will forever be sorry that this happened to either of you. Soon I will sit for the MCAT (September) in the hopes that I can be one more weapon in the fight against childhood cancer.

    Reply
  7. KT

     /  July 20, 2012

    Hi mama, lots of love to you and your boys.
    I’m so glad you could get out of Phoenix to
    breathe. The picture just breaks my heart. It’s
    just so messed up!!!
    xo

    Reply
  8. Elena de Torres León

     /  July 21, 2012

    Mama, this world is fucked up but there still are good people out there.
    I’m sorry about Ronan, he is the most beautiful boy that has ever lived. I didn’t get to know him but I’ve read all your posts and every time I read one I felt his presence in the room. I know it sounds weird but it’s true.
    That preschool picture of Ronan is amazing. How his hair is combed to one side and how he’s looking directly at the camera, how his beautiful eyes seem to look right through you… I could go on and on.
    Thank you for sharing everything with us and thank you for making me look at the world from a different view.
    xox

    Reply

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  • Instagram is my BFF

    Car wash babe. #poppy #ronan #poppyrooiloveyou #legsfordays #littlelady This just made my day. 
#Repost from @chloegoulden13
--- OKAY HI. So, as you probably know I am a huge advocate in raising awareness and funds for childhood cancer. Childhood cancer is the number one disease killer of our kids, with 46 kids being diagnosed a day and 7 dying a day in the United States alone. It receives next to no funding federally, and is swept under the rug because it is too sad. Well things have to change. The Ronan Thompson Foundation is a beyond amazing foundation in honour of Ronan Thompson who died at age 3. And through Taylor Swift and Maya (his mama) I've learned Ronan's story and become aware of the tragedy that is the world of childhood cancer. SEPTEMBER is childhood cancer awareness month and the colour is GOLD (official in HRM, HOLLA!🙌) and I intend to do my part. The #BeBoldGoGold campaign (created by Maya Thompson and Kassie Rehorn of the Ronan Thompson Foundation) is designed to spread awareness about this terrible disease in a fun way. Deck yourself out in gold and educate people, challenging them and your friends to do the same. This month I vow to do that... Through running. Throughout September, I will run as many races as need be to reach 50 kilometres (or 31.1 miles for all you American lovies) and spread awareness at each race. However, while awareness is great, funding is even better. So there will be a page set up where you can sponsor me throughout the month and support the cause. All money will go to the Ronan Thompson Foundation and the IWK Foundation to help kids locally and internationally, fight cancer. To learn more about it, go to www.facebook.com/chloesraceforgold or click the link in my bio. There will be a schedule, info and a place you can donate. Ronan, I am so sorry this happened to you. We will fix this broken world. #ronan #beboldgogold #theronanthompsonfoundation #iwk #halifax #fucancer #heshouldbehere Join us in the Be Bold Go Gold Challenge! Snap a pic of yourself all decked out in your gold and nominate some brave souls to do the same! @beboldgogold  I was nominated to do the #beboldgogold💛 and I nominate @mamamaya @knjoy and @woodythompson75. #rtf #empiregogold #ronan
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