Wild and free, together we will be


Ronan. Hello little bug. Guess what I did today. I spent the day doing things that I would normally not be doing; if you were still here. This happens to me a lot in this new life of mine. Sometimes, I feel as if I am living a double life. That I’m living the life of a person that I do not know at all. I’m trying to figure out who this new person is and if I like her or not. I still have not made up my mind about that. We shall see. I am thinking she is not going anywhere anytime soon. But I also know that I have no way of knowing that because as we have learned, life can be cruel and take you in an instant. And as we have learned, we have no control over when your time is up because death does not discriminate. I’m trying to remember that I am supposed to be making the most of every second, of everyday that I am “lucky,” to be alive. I don’t feel very lucky without you.

Today, I was honored at the Arizona Foothills Luncheon. It was weird. Weird in the way that people whom I did not know said things to me like, “Congratulations!” And I didn’t know how to respond so just coyly smiled and listened to the little voice in my head that said, “For what? My dead child? Oh, I know. So totally awesome!” I forget that there are people out there who think I’m inspiring as I am only listening to the way you are telling me to do this. So when I hear things like, “We are proud of you. You are so amazing!” My thought or response is usually just, “Well, he was amazing.” Because that’s all I know to be true, Ronan. That people should be proud of you, not me. People should be honoring you, not me. I’m simply just a vessel here left on earth, to carry out your mission because you were destined for greater things, right? I truly want to believe this last part. But of course, the selfish me does not want you to be destined for greater things and it pisses me off that you are gone and just not at home, cuddling in bed with me where you should be.

The luncheon was really nice though and I am grateful to AZ Foothills for not being afraid to take a chance on a girl like me as I know how sad and dark this story is. I am grateful that they can see beyond the sadness and the darkness of this story to the love that shines through, so brightly. Nobody can deny that no matter how many times I throw the fuck word out there and I scream, “I hate the world!!!!!!” at the top of my lungs. Our love story is undeniable and I am thankful that they chose to honor it today. I got to sit at a table full of our loveliest of lovelies and watch as they all wiped the tears from their eyes. Dr. JoRo got up and spoke for about 30 minutes. There was not a dry eye in the house. She talked about you a bit which I was not expecting…. but it was a nice surprise. She talked about life, death, kindness, sadness, laughter, love, and all things honest. It may have been a little too honest for some of the people in that room today. I wondered how many actually really walked away, grateful for the gift of watching one of the most beautiful souls on earth, speak. I hoped every single one of them. I wondered how many of them had taken care of their sick baby, who had cancer. I wondered if any of them knew what it was like to spend 8 months in cold, icy hospital rooms, fighting every second of everyday for a life that means more to them, then their own. Cleaning up vomit. Blood. Shit. Pee. Medicine. Spit. And feeling so grateful to do so because it meant LIFE. Not death. All while listening to the screams, cries, tantrums, of their child and other children around them. All while the rest of the world, ignores them because it can’t happen to them. I wondered if any of them knew how close a mother and a child grow, going through something like this together. How a bond is formed, unlike any other that exists in the world. I wondered if any of them could have imagined going through something like this only to have the love of their life, taken away from this world. To have watched as their child, slowly died. To have held their child as he or she took their last breath and fluttered their eyelids for one last time. I wondered if any of them, could have survived this and put on a green dress 8 months later to sit in a room full of women, who have not survived this. Only one woman in that room, had survived this today and that was me. For about .2 seconds, I was proud. But only for the reason that really matters. Because I knew you were watching over me today and I knew you felt proud. That’s all I care about as it is the only thing, that truly matters to me. Every single thing I do, every breath I take, every foot I put in front of the other, every tear I cry, smile I smile, everything I do in this life…. is for you. And I am so grateful for the gift of our love. I know I say this all the time, but it will change things. It is already changing things. I know we are just getting started, Ro baby. I know this.

So, the past couple of days have been pretty hard. But looking back, I’ve had some things happen that have made me laugh. Mostly shit that I hear myself saying or doing and I can’t believe that I am saying or doing. Sometimes, it makes others laugh which I swear to god, is the BEST medicine. When I make other people laugh, Ronan. OH.MY.GOD. You have no idea how good this makes me feel. Me, the girl with the saddest green eyes, still has the ability to make people laugh. For such a little thing, it means the world to me. These are the conversations over the past couple of days, that have given me a good chuckle. I hope they made you laugh too.

Last night, we were driving home from my very Fucky Sucky Unbirthday. As we were driving home, up on one of the hills by our house there is the most obnoxious, huge house. It is covered head to toe in Christmas lights. I mean covered. Every inch of the house, trees, cactus, etc….. My head immediately went to……” I wonder how much electricity those people are wasting, for their God damn Christmas lights. It could be going to Childhood Cancer. Think about all the money, people waste, for Christmas lights when it could ALL go to Childhood Cancer. America is so stupid. And ignorant. And blissfully blind.” Christmas lights, in my crazy, bereaved mind, should not exist anymore. I then said to myself…. “OMG. It’s January. It’s my birthday. Christmas is way over.” I said to your daddy, “Take me to the store.” He looked at me and said, “For what?” And I said, “For some eggs. I’m going to egg those assholes house, who still have their obnoxious Christmas lights up! It’s January 11th! Why do they still have their lights blaring?!” Your daddy then told me he would in fact, not drive me to the store, to get eggs, to egg the assholes house. I actually replied to him, “IT’S MY BIRTHDAY! I CAN DO WHATEVER I WANT! SO TAKE ME TO THE STORE, SO I CAN EGG THEIR HOUSE!” I quickly realized one of two things: 1), that I was acting like a bratty 13-year-old, which I often embrace, and 2) that this plan was not going to happen so I should just let it go. The thought of actually doing this, made me laugh so I let that be enough to satisfy me. I know you know I fully planned to escape during the middle of the night, to drive myself to the store to buy eggs and do this. I should have called my Mandy Bee to pick me up. We could have dressed up like real life Ninjas. Word to the wise. Take down the fucking Christmas lights. Christmas is OVER. Move on. And if you are too lazy to take them down, just don’t turn them on. You are blinding me with your obnoxious, asshole, stupidity.

I went to get the mail today and I had some random package come in it. I get a lot of these. A lot of the time, they are small things, from strangers and they always make me smile and cry. It’s the pure kindness that gets me the most. Today, I got a package and it didn’t say who it was from. I opened it up to find the best tee shirt EVER! It’s black and in bold white letters, it says, “Fuck you you fucking fuck.” It totally made my night. I proudly put this tee-shirt on, as your daddy was getting ready to take me out for a quick bite to eat, as your brothers are staying with your Mimi and Papa tonight. Your daddy once again, just looked at me. “You cannot wear that out of the house, in a public place. You need to listen to me. I do this for a living, you can get into trouble for that.” I just looked up at him. UGH. Why does he have to be such a rule follower?? You died of cancer so don’t I get a hall pass to wear/do/say/act any way I want? Turns out, that although I often feel this way, I do not. “I’m wearing it. It’s awesome. If I want to wear it, I can. I’m sorry you didn’t know what a rebel you married, I’m sorry it’s been so repressed and you now have to just get used to it.” You daddy started chuckling out loud at that one. He quickly informed me that he knew what he was in for, when he married me. Since he was trying so hard to be a good sport about it, I cut him some slack and put on a coat on over my shirt. But I only told him I was doing this because I was cold, not due to the fact that I was about to give him a heart attack. And I unzipped my coat in the restaurant; obviously Ronan. Rule breaker for life:)

While we sat in the restaurant, we sat and looked like the “normal,” couple that exists in society, everywhere I go. We ended up sitting next to this couple who had a child about your age. I tried to ignore this annoying couple tonight. I was trying my best not to let them rip my heart out because that should have been us, sitting there with you. I was doing a really good job until I noticed the toy that the little boy pulled out of his bag. It was a lego Star Wars toy. My eyes welled up with tears and I choked on the strawberry that I was trying to eat. The mom started talking really loudly about that book, “The Secret.” The Oprah book that had everyone raving a few years ago. I never bought into that horse shit of a book but apparently, when you put something out there in the world, that you want to happen badly enough…. if you want it enough, it can magically be yours, just by you putting it out there, Ro. Or it can also be said that, everything in life, is possible, nothing is impossible. There are no limits. Whatever you can dream of, can be yours, when you use The Secret.

Otherwise known as HORSE SHIT. I’m pretty sure, the people starving in Africa will not die…. due to “The Secret.” I’m pretty sure that the packed orphanages around the world, will not become empty….. due to “The Secret.” I’m pretty sure, the problem of homelessness, childhood cancer, kids dying in general, abused kids, drugged up parents who should not be fucking parents because they put their baby in the spin cycle of the washing machine….. will not disappear because of “The Secret.” I’m pretty sure, the fucking god damn Secret book, will not bring you back. But I listened tonight as this lady told her husband the power of ” The Secret.” and how it was going to bring her a new car this year, a fancier one. Your daddy watched me as I listened. Your daddy squeezed my hand. “I’m going to throw my strawberry at this ladies head, if she doesn’t shut up.” She didn’t shut up. I didn’t throw the strawberry at her head. I got up, walked past her and made sure she saw my tee-shirt instead. Her mouth dropped to the floor. I just smiled. I now know who sent this tee shirt. Word travels fast when you grow up in the smallest of towns with the biggest of hearts. Thank you, S. You truly are one of my little devils rocking this thing called life for me, when I cannot.

Tonight, your daddy looked at me, Ro and goes, “How long until you get a devil tattoo?” I just laughed. And I thought of you. My most spicy, little devil who was all things sweet, pure and innocent. My most beautiful little devil that rules my life and I wouldn’t have it any other way. I’ve never understood the angel/devil role. The angel always fucking annoyed me and it still does to this day. Why can’t the devil be an angel too? Why does the devil, have to be bad? Because that’s what society teaches us. That’s what religion teaches us. That’s fucking stupid. It’s called being brain washed. It’s called letting something “bad,” control your life and fear it. I say take that something, “bad,” and make it GOOD. Take that little devil and instead of making him evil, make him spicy with nothing but the purest intentions. Make him an outside of the box kind of thinker. Make him fix problems in all sorts of different ways, just not one formula. Not just one answer when the world is full of so many different answers. Make him brave, determined, fearless, smart, compassionate, loving, crazy, independent, sweet, kind, gentle, and unique. I have a little devil that sits on my shoulder all the time and that is you. You are all of those things to me and you always will be. The little devil who knows what it means to be naughty and nice, in the best way possible.

Alright Ro. I’ll get off my soapbox now. To each his own. Respectfully so. Wild and Free, together we will be. I love you to the moon and back. I miss you. Every second of everyday. Sweet dreams little man. I hope you are safe.

xoxo

P.S. I’m too tired to touch on this subject tonight so I’ll just leave it short and sweet.

Dear Mattel,

If you do not make that Barbie, with a bald head, for childhood cancer, then you are ASSHOLES and you will be disappointing so many people who you could so easily make smile. It’s a NO BRAINER. Please do not be morons here. We have enough of those in the world, ****cough cough**** Casey Anthony and her fucking “Webcast that was hacked.” Make it. Donate the money. But please be aware, of where you are actually donating the money to. Please donate it to somewhere, that is actually invested in finding better treatments in hopes for a cure. Don’t do this, to make a profit off of it. Trust me, nobody benefits from a dead child. Well, except the insurance and pharmaceutical companies, but that is a whole different story that I’m sure you are not interested in because this can’t happen, to you. I’m here to tell you it can.

Be active in spreading awareness. Just fucking do it.

Sincerely,

RoMama

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28 Comments

  1. Kelly

     /  January 13, 2012

    Wow….I felt you were writing about my life when you wondered if anyone else had to care for a sick child for 8 months. What you said is sooo true and was my life for 8 months. The bond between mother and child becomes so strong, like no other and to have it taken away. I am still crying as I type this.

    Reply
  2. Therese in Ireland

     /  January 13, 2012

    I have to say, Ro brings out the very best in you. The witty, foul- mouthed, no shit taking, feisty, brutally honest, endearing and heartfelt you. Parts of this post made me laugh out loud, you’re the best I’ve ever read at telling it like it is. I really believe that Ronan is very proud of you, surviving this. I get that you’re broken and that every day is a struggle. But you’re being so straight and true that’s it’s a privilege to share your story with all who will listen. You and Ro will do great things, of that I have no doubt. Sending every best wish for peace and comfort, I think of Ronan every day. Always Ro.

    Reply
  3. Sue Brigman

     /  January 13, 2012

    Your Mom told me another truly wild and free thing you did on your unbirthday, skydiving! Really? What a great gift to yourself! Wish I was as brave as you to do that.

    Reply
  4. Jaime H.

     /  January 13, 2012

    I totally voted for that barbie to be made on facebook and I hope they make it!!! Hope you have a good day today Maya!! xoxo

    Reply
  5. Angie

     /  January 13, 2012

    Beautiful words…..lots of love to you and your family!

    Reply
  6. Mary

     /  January 13, 2012

    Maya, you are one ballzie dude! My friends and I used to laughingly call each other that (in the 80′s) when we really weren’t doing anything ballzie. I say with the utmost respect that you truly are one ballzie dude – for many reasons but for especially jumping out of that plane.

    The love story between you and your son is beyond moving. It is absolutely beautiful. I am going to be volunteering at a children’s cancer facility in Boston because of you and Ronan. Rock on!

    Reply
  7. Glenda

     /  January 13, 2012

    Maya,

    Love your realness. You make me smile, laugh and cry!! You and Rockstar Ro are making changes. Are inspiring. Are bringing awareness. Congrats on your recognition!
    Keep doing what you’re doing!!!

    I voted for the bald barbie as well.

    Peace and strength mama!!!
    Thinking of you and Ro…always Ro!!!
    FUCancer!!!

    Xo

    Reply
  8. Mary

     /  January 13, 2012

    I’ve been reading your blog for quite some time…… my little girl is struggling with the same cancer and while each story is unique and special, the cancer is all the same.
    First thought for today……… those idiot assholes that still have their christmas lights up with blaring expenses…..? Maybe they left them up for their child that died of cancer. Maybe they promised a dying loved one that christmas would never end. Maybe……..just maybe they are suffering as much as you. My sisterinlaw passed away Christmas Eve and maybe my brother cannot find the peace in his soul to take down her beloved Christmas Tree. Or turn off her lovely lights. Maybe, just maybe those christmas lights in their blaring obnoxious way are giving light or love to another person.

    Reply
    • I’m sorry Mary, that your daughter is going through this and for the loss that your brother and family are experiencing. If it makes you feel any better, we do leave a tiny area of our patio lit up, all year long. I like to look at the lights from my bedroom on the nights when I’m crying the hardest. But it’s a tiny area…Not a 25,000 square foot area that has lights blaring and blinking still on January 11th. I’m sure the people that live in that house, have many people to help them take care of it. I’m sure someone, could come and turn them off, it needed to be done.

      Reply
      • Melissa V.

         /  January 13, 2012

        Mary–I am so sorry for what you and your daughter are going through and for your brother and families loss as well. I thought the same thing about Maya’s comments on the obnoxious lights–that maybe there was a family inside who knows there baby isn’t going to make it to next Christmas, and they just didn’t want it to end–or maybe they are saying fuck the rules. Maya–you are the one who has taught (not sure if that is the right word) me that I should not judge as you never know a person’s story. To look at you on the outside you are just one hot mama with a successful husband–and from what you have said, you live in a nice neighborhood. We all know that what may appear to the outside though doesn’t come close to who you are and what you have lived and still live. I try to remember that in every encounter…with every person no matter how little or much the appear to have. If those people are just lighting to light though–I would hope they are also as passionate in their giving. Perhaps you could drop a little FU cancer bracelet in their mailbox?! Not as naughty or funny as the egging (which did have me giggling!) but certainly more powerful! Love you, Maya!

  9. Hilary

     /  January 13, 2012

    Maya…big hugs to my favourite swearer.

    Thought you might like this -The bald Barbie Facebook page – http://www.facebook.com/BeautifulandBaldBarbie

    Hilary xx

    Reply
  10. kelsey

     /  January 13, 2012

    “You’re blinding me with your obnoxious, asshole, stupidity”…..do you know the brilliance of this sentence?? your word choice is spot on…everytime…..ha, I knew I liked you….and with this blog, you show me yet another reason why…The Secret…the stupid fucking secret…my husband grew up without electricity, a toilet, or much hope for that matter….we somehow happened to catch a little part of The Secret, on Oprah or the actual movie, I can’t remember….you would love his take on The Secret!! :)
    …I sat with my 2 year old all night last night while he violently puked due to an aggressive virus making its way through our county….in just that tiny 24 hours I feel like our bond took on a whole new meaning….of, course I thought about you and Ronan all night as well…. :( I am so sorry… love, love, one perfect love…

    Reply
  11. Charity

     /  January 13, 2012

    Wonder if bald Barbie would still have a full face of makeup? Probably. They wouldn’t want her to look sick or anything!

    Reply
  12. Michelle H.

     /  January 13, 2012

    I’m still laughing at ‘Word to the wise. Take down the fucking Christmas lights.’ That’s awesome. Only your words can make me cry and laugh within paragraphs of each other. xo michelle

    Reply
  13. Susan

     /  January 13, 2012

    Horse shit is my absolute favorite way to respond to just about anything ridiculous. And I have a southern accent which makes it that much better! I am SO sorry you lost Ronan. But thru your grief you are inspiring and reminding many of us to ‘live in the moment’. Glad you were officially honored for it.!

    Reply
  14. Leslie B.S.

     /  January 13, 2012

    I just found this blog and I’m rubbing my snotty nose all over my sleeve as I read and type. I’m heartbroken for your loss. I beat cancer last Easter but I told my hubby that if I ever succumb, to make sure and put up an obnoxiously huge Christmas tree every year for me. So when I read your post, I laughed out loud and made a huge, wet mess of my keyboard. Fuck cancer. I don’t know you, but I love you and admire your courage.
    s/f

    Reply
  15. Oh Maya, your post made me laugh hysterically on several occasions! Well, and cry too, as always. I’m sorry this blog even exists, I wish it didn’t. I’m grateful for the awareness Ro is creating with you along side him. If you want to be mad at obnoxious Christmas lights past January go on ahead… the thought of you egging a house with your lawyer husband by your side shaking his head makes me smile. You guys are quite the cute pair and it makes me smile. Maybe a FU cancer bracelet in the mailbox is not such a bad idea. :) Love you, love Ro…. pretty much love your whole family.

    Reply
  16. Erica G

     /  January 13, 2012

    Not sure if this is real…http://www.tumblr.com/tagged/hope-barbie

    Reply
  17. Janet

     /  January 13, 2012

    Maya, I was looking up marathons to sign up for and found the Run for Ryan House. Because of you and Ronan, this is the marathon my friend and I will participate in this spring at DC Ranch. Thank you for sharing your story- like so many other mothers have commented, you have made me aware of how precious our children are, how precious life is. I do not stress over messy art projects or spilled juice on the couch anymore. That’s just so stupid. I cannot imagine the heartache you survive everyday and wish you many future blessings to help heal your soul and your family’s as well.

    Reply
  18. BJ Carter

     /  January 14, 2012

    Your post was hilarious..well in the part about that couple and how the Secret is going to bring them a new car. We have a family member fighting cancer and can relate to much of your feelings. You tend to get the “scripted” answers that everyone has, which I am sure you get all the time. I love the lyric from Dave Matthews and Tim Reynolds on the song Eh Hee,
    “Beware the people who’ll
    try to convince you
    That they know the answer
    No matter the question
    Be wary of those who believe in a neat little world
    Because it’s just fucking crazy
    You know that it is”

    Reply
  19. Lea

     /  January 14, 2012

    The Chronicles of Rockstar Ronan or The Diary of a Bereaved Mother has to be written. You are too powerful of a writer not to spread these words wider and deeper. You have me in stitches this morning! I could only imagine all the funny but not so funny shit that swirls around in your head all day, everyday, due to the lack of awareness of those average Joe citizens that populate the world around you. Laughing is the best medicine!

    Reply
    • Lea

       /  January 14, 2012

      Glad you still find dark, funny, immature things to laugh about! Those little idiosyncrasies are the best and funniest for obvious reasons :)

      Reply
  20. For some unknown reason I did listen to the Secret (or maybe it was another one of her books). I seriously considered writing to the author to ask if everything in life, is possible, nothing is impossible and all you have to do is dream about it how come 2 of my children have predeceased me? Did I not dream enough that they would live?

    Fuck you cancer!

    Reply
  21. katherine

     /  January 14, 2012

    Maya,

    I think about you and Ronan everyday (and Woody, Quinn and Liam), and today I heard a quote that I liked (for my grief at least) and I thought you might like it too.

    “It’s not really true what they say in the pamphlets about the stages we go through: shock, denial, guilt, anger….blah, blah, blah. It’s really just a stew. They’re ALL, ALWAYS THERE. But I hope that one day, a light really does come out of the darkness….I’m still waiting.”

    I haven’t met you but I love you!!!!

    Reply
  22. KT

     /  January 15, 2012

    I’m still chuckling at the comment “I fully planned to escape during the middle of the night, to drive myself to the store to buy eggs and do this.” I love you! I’ve told you before, sometimes I read your blog in a public place and I laugh out loud so hard that people turn and look. Big hugs to you!!!! xoxo

    Reply
  23. Jessica T.

     /  January 15, 2012

    I hope they make the barbie too. Although it is horrific that it even needs to happen. We shouldn’t have to make cancer toys…because kids shouldn’t be sick.

    I was eating at McD’s with my kids the other day. On the side of the Happy Meal was a little thing about Ronald McDonald house. My son asked about it, so I explained to him what this place was and that it was a good place. On the bottom of the bag McD’s advertises that they donate 1 penny of each happy meal purchased to RMH. UM, how embarrassing! One FREAKING penny? I realize that adds up to alot, but seriously! One penny.

    Reply
  24. “Devil” has been associated with Satan through religions in the world. however, long before that association, there was the association which simply linked it to michievious feisty/spicey behaviour. Sounds like you are going to get a “lil devil” tatoo on your shoulder (left shoulder, over your heart?) as your next living on the edge experience. Wishing you the best of luck with it. Could not agree more with you on the bald barbie. Not only does it help children going through chemo feel less stigmatised and a little more normalised, but think also about children with hair loss disorders such as Alopecia. There is so much upside to this and so very little downside so, yeah, no-brainer.

    Reply

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    Having a conversation with crazy from across the street. #poppy #ronan #poppydoesntdropthefbombsthough #fucancer @knjoy I think I found the person that's been eating all of our Nutella. #poppy #ronan #busted #weneedanewjar #nofoodjustnutella My favorite Poky Little Puppy. #poppy #ronan #bookobsessed #pokylittlepuppy #ilovehervoice Must be a book writing night. #ronan #fucancer #ronanbook #bestofficeever #handstandqueen Somebody get this kid an agent. #ronan #fucancer #omg #hes10 #basketball #littleballer #madskills Brother pick up time! #poppy#ronan #fucancer Working on my skin cancer. #ronan #fucancer #justkidding #coveredinsunscreen #camelbackmountain #hotasballsuphere #mommytimeout She had to stay up past her bedtime to wait for her sissy to get home. #poppy #ronan #fucancer #soulsisters @knjoy Watching that pretty Arizona sunset. #poppy #ronan #fucancer #poppyrooiloveyou Fuzzy besties. #poppy #ronan #poppyandmama #fucancer #love For the past two weeks all Poppy has been doing is carrying around Ronan's picture, kissing it, saying "Ro Ro" and trying to open the frame up because I think she thinks if she does, he will come out and play with her. It's heartbreaking and so very sweet. I'm amazed that one of her first words was Ro Ro and that she walks around saying it all day long as if he is her very best friend. #poppy #ronan #fucancer Sorry to wake you sister, but we have to get your brothers from school. #poppy #ronan #sleepysister #fucancer
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