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All Good Things Are Wild and Free
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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.
We are sooooo close to getting this trial for Dr. Yael Mosse at Chop funded. Do you want to help??? Do you have 5 dollars to make me holla?!?! Skip the Starbucks today! Let’s save some kids!!!
The donations have been pouring in thanks to the power of Facebook and social media in general! I am so humbled, proud, and filled with RoLove that I could explode. Thank you so much to all of you who have donated already! It’s because of all of you, that we will do this!
If you have not donated, there is still lots of time to do so. Come on peeps! If I can run 26.2 miles, without training, 5 bucks is nothing! It would mean the world to me. Ronan would be so proud.
Thanks lovely little blog readers! And Happy Star Wars Day, Ro baby. I know the force is with you. I love you.
Ronan. The weekend is over. I guess it was busy. It’s late now but I actually just got home. This weekend went a little something like this… A baseball game. Dropped your brothers off for a sleep over at a friends. Your daddy looks at me as to say now what? Because another date night of me staring across a table at him, sobbing so hard that I cannot eat and I will blow my fucking brains out. Luckily, we had made some kind of sort of let’s do something with Danielle and Dave, plans. We went to dinner. We caught up. We went bowling. I may have sucked really bad the first game. I may have gotten the high score the second game and redeemed myself. I may have smiled. I still felt sad, but it’s good to be with friends like Danielle and Dave. They are easy. They both love you. Sunday, your daddy went into the office. I picked up your brothers. We all then went to this place called Mike’s Big Breakfast for lunch. Oh, how you would have loved it. This was all I could think of the entire time we were there. I think Liam ate 10 pieces of bacon. And pancakes. We sat at the bar. Everyone smiled at us. It felt weird to me. I wanted to scream out, “Hey! No smiling allowed! We are not the happy family that we may look like! Don’t you know our Ronan is missing? Don’t you know our Ronan is gone? I just want him back! Why isn’t anyone bringing him back?!! But this food is really fucking good.” And I don’t even really like food anymore, so that’s saying a lot. Unless it comes in the form of Airhead Extremes Candy. Or Coke. I will love those two things, forever. Your brothers went over to a friends’ house later Sunday for another play date. It’s good for them and helps out over here so much. I can use the break and so can your daddy from the constant parenting that we are always doing. Parenting that is so exhausting when you are constantly dealing with this pain and grief. Your daddy asked what I wanted to do. It was so sunshiny and nice out. Shiny mother fucking people everywhere. Put me in a dark room please and let’s watch “The Girl with the Dragon Tattoo.” That’s what we did. I had already seen it. Your daddy had not and I knew it was right up his alley. It was while watching this movie, that I found out about our little friend, Jaiel. The 16-year-old girl that I had told Rita about around a month or two ago, who was fighting Neuroblastoma. The girl that was the reason that we decided to go to the anti bullying press conference that Nicole Stanton had because Jai had posted something about how it was nice to know that people who you thought were your friends, really were not because they were all just waiting for you to die. Her post ripped my heart out. She is 16 and she is dealing with real life in the most horrific way. She does not have normal you are so fucking lucky to only have a boyfriend breaking up with you problem, to cry about. This girl was fighting for her life. Something that so many people, take for granted.
Somebody posted something on Facebook saying she had passed away yesterday. Impossible, I thought to myself. I had just been messaging back and forth with her a week or so ago. She had just had another surgery, so she could continue to fight. I thought she was doing o.k. I should have known better. Because I know first hand, how evil and unpredictable this disease can be. I sat in my bed, in shock. Your brothers came home soon after that. I had to keep it together for the sake of them. Your daddy asked if I wanted to play outside with them. “No,” I quietly said. I would not. I played catch out in the parking lot today of Matt’s Big Breakfast. That’s enough for today. That’s all I can do, for today. Unless Ronan is there too. Then I would like to play. You were not. So I left. I went for a very dangerous, night hike instead. But before my little hike, this is what I did. I parked. I sat in the car and sobbed. I sobbed for Jai. I remember thinking to myself poor Jai. And her parents. I cannot imagine what they are feeling. I cannot imagine what it feels like, to be them. Then I had visions of your little face, your little voice, your little lips and how lucky I was to be able to have all of those things. But then I remembered that you are dead. I had forgotten. My head started spinning and I thought I am never going to see him, again. At least not in this life. How is that even possible? How can this even be real? I bolted out of my car. Luckily, I had decided to wear my FUCK YOU YOU FUCKING FUCK tee-shirt while hiking up the mountain today. I do not think my fellow hikers appreciated it very much. The amount of dirty looks I got was actually quite humorous. Quite a few people gave me dirty looks. I gave them dirty looks back while the black tears poured down my cheeks. I’m pretty sure I looked mad. Like in a Mom’s Gone Mad sort of way. I’m pretty sure I didn’t really fucking care today. I am glad nobody said anything out loud to me because I might have punched them. Maybe not punched, because I don’t do physical violence, but I totally would have assaulted them with my middle finger instead.
I came home and your daddy just looked at me. I had snuck out of the house without him seeing what tee-shirt I was wearing. Score 1 for secret operation ninja Maya plan. Score 0 for OH MY GOD NO YOU DID NOT WEAR THAT Woody. I did. And I’m not sorry. Cancer can be sorry, for killing my child. And this is how I feel about cancer, so I’m wearing it. Plus Jai died. And all of these babes are dying, so yeah, fuckyouyoufuckingfuck, was appropriate. I don’t care who says otherwise.
This is what Quinn said to me about 10 times today. “Mom. We have an AIMS test tomorrow. Can you cook us a really good breakfast??”
“Ummm…. of course I can, Quinny.I will cook it and you will do awesome on your test.”
He asked me this, about 5 more times tonight.
I thought to myself, don’t I always cook a good breakfast before school? Then I remembered that no. No I do not. I used to. I used to ALWAYS cook a good breakfast for all of you. Your eggies. Your scrambled eggies. Bacon. Sasauge. The works. I would feed you all, scoop you up in your P.J.’s and throw you in the car. We would drop your brothers off at school and come back home to play for the rest of the day. Now eggies only really happen, on the weekends. During the week, it’s every man for himself here is some cereal and shove some yogurt down your throat if we have time. Eggies pretty much kill me, without having you to feed them too. Tomorrow, I will cook eggies on about the 4 hours of sleep I am going to get tonight. Tomorrow, I will get up extra early to cook the eggies without you. I already hate tomorrow.
This is the other conversation that has gone on for months now. May. May consists of telling your daddy, I think we need to go away. I do not think it would be a good idea for us to be here, in May. Your daddy wants to know, where I want to go. China. Thailand. Vietnam. Australia. I think it may be a little late for those places. I don’t think I can plan a trip like that. I cannot make a decision to save my life. Why can’t I plan a freaking trip? What is wrong with me? This is easy! Turns out, it’s not so easy. I think I am having major mental block out May issues. If you block out May, it won’t come. It’s coming. I cannot be in Arizona for it. East Coast. I think it’s going to be an East Coast trip. I told your daddy this tonight. Maine? Boston? All of it? “Whatever you want,” was his reply. Just please plan it. Fuck. A plan? How can I plan this let’s get the fuck out of here, because Ronan’s 1 year of everything is coming up??? Because if I do not, I know what will happen. And it is not good.
I tucked your sweet brothers in tonight and sent Rita a text. “Hey. Do you have HBO? I do not. And “Girls,” is premiring on HBO.” It’s our fairy RoMo’s good friends show. I don’t watch T.V. but I did tonight due to Rita’s response that she did indeed have HBO and she lives close by. We sat and watched, laughed, and LOVED it. I stayed over there late. We talked about May. She has been trying to help me make a decision for weeks now. I’ve been ignoring her. I thought she was going to fly off the couch with happiness when I said, “I’m thinking East Coast…” She seemed to think that was great idea. Maybe tomorrow will be the day that I can make your daddy proud, by figuring this shit out. Maybe tomorrow is already here and it looks bleak. We shall see.
Eggies to cook in the morning, Ro. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.
Ronan. I wonder if I’ll ever have a night where I don’t cry myself to sleep about you. It doesn’t matter if I have the best day possible. I always end it the same way, by crying myself to sleep. Or not sleeping so I just sit and cry and beg for sleep which never comes. It came last night, oddly enough. It’s been 3 nights straight that I have not had to take anything to sleep. I’ve been dreaming really vividly. It’s always the same thing. You are dead. Everybody knows it and is talking about it around me. I never get to see you. Your favorite lovie is always in my dreams…. like Master Yoda. Except this morning I woke up thinking he had died to which sent me into a total panick. I grabbed my phone and sent some crazy text message blabbing about my dream, you know making sure he was still alive. He was. Thank you, Ro.
Today was a pretty good day. Except I have Liam home not feeling well. He is the BEST little sick kid ever. No complaining, no whining, he’s just quiet and content. It felt nice to take care of him. He is so thankful for everything he has. Even without you, Ro. He is so thankful, sweet and kind. He is so happy just to be alive and healthy. You have made him appreciate everything so much more. I don’t know how it is possible to have such kind, well-adjusted brothers after losing you. But they are. It is bittersweet but it gives me one less thing to worry about for now. So I will be thankful for that.
I had a lot of busy work to get done today. I had my friend, Tanya, come over to help me with your new website. For your foundation, not the blog. It’s going to be Romazing. I cannot wait to get it up and running as we are adding a lot of great things to it. I also had one of my lovely little board members over to do some things are our new kick ass intern, Rissy. She’s a student as ASU and is such a doll. I am so excited and grateful to have her help. We need it badly as so many things seem to be happening with your foundation that I can’t keep up. It’s amazing all the really, really good people in the world. They make all the really, really bad people just go away. But you know what the funny thing is? All the haters that come on here, hide behind their computers, and write mean things…. they make me laugh. Like really laugh. Because the things they say are so absurd. It only adds more fuel to my fire, and motivates me in a way that I did not think was possible. In a way that I know that good will prevail over evil. It’s a Rovolution, baby. Because all good things are wild and free.
Here of some examples of why I know things are going to change in the name of childhood cancer and all things good in the word. Because of the thousands of emails I get a day, from people begging to help. Telling me they are so thankful for what they have. That their eyes have been opened up from the ungrateful slumber that they lived in before. Even though they have never been touched by childhood cancer, they don’t care. They are such amazing, kind people that they are not going to sit back, read this story, and do nothing. That is inspiring to me. That moves me. It is one of the biggest reasons that I get out of bed everyday and continue to march forward.
And then there are things like this: A friend. A new friend. A new friend who has been quietly sitting behind the scenes until a few weeks ago when we met up for some dinner and it has been a love affair fueled by endless amounts of chips, salsa, mexican cokes, and all things you. A new friend that sends me an email saying she just got a really insane kick ass job offer and was offered a huge salary, but she is thinking about passing on it. I tell her I’m so excited for her and she tells me that I am missing her point. With a huge salary comes a lot of hours. She says she is going to pass on this huge job offer because she pretty much thinks I am serious about kicking cancers ass and she wants to be able to continue to help me. Because she gets that there is more to life and she fully believes that I am going to makes a lot of shit happen. I told her, do not pass because of me!!! She told me this:
“Because of you. Because of Ronan. Because of kids who need a voice. Because I always fight for the underdog. Because yes, you are fucking inspiring whether you want to be or not.”
Do you want to know what else she told me? That she is afraid I am too kind for this world. I tried to argue and told her to fuck off! That I am not. I am a mean, badass who uses my middle finger 100 times a day, swears constantly while thinking of how I can destroy the world with all of my anger! But that was a lie and she knows it. Truth is, I don’t really swear much in real life and when I do, it’s probably while baking an apple pie while trying to figure out how I can use this anger for good, not evil. Damn it. I wish I could be a little more mean. I guess that is what all this venting is for, on here. Because it is on here that I can get my meanness out. I guess it is better to hash it out on here, then to hash it out in the real world by starting the imaginary bar fights that I think would be so badass. If I were that type of girl. But I’m not and never have been. I’ll just continue to bake my apple fucking pies I guess.
Yes, I called you Fuckwad. You have really, really pissed a lot of people off. I would really hate to be you right now. Actually, you know what? I’ve changed my mind. I would trade places with you, in an instant. Do you know why? Because when I was trying to find a picture of your pathetic face tonight, to print out and attach to my punching bag, I read that you have 3 children. 3 healthy children. I too, had 3 children. 3 boys to be exact. Now I have just 2 boys, among the living. I had to have my 3-year-old son, Ronan, cremated, just 8 months ago because he died from childhood cancer. It sucks to be you because of the ignorance you have chosen to display and the backlash you are going to receive. But it really, really sucks to be me because I have a child who is dead. So therefore, I would trade places with you in an instant. I would rather have my head on a platter, with 3 healthy kids, whom you get to tuck in at night, then to have to be the parent of one who has died from this “rare,” disease called childhood cancer.
Have you even given any thought to all the kids who suffer and die from childhood cancer? This rare disease of childhood cancer which is actually in fact the NUMBER 1 CAUSE OF DEATH BY DISEASE FOR CHILDREN! I really doubt it because I’m sure you are too busy hiding behind your big, fancy desk in your big, fancy suit. I have given a lot of thought to all the kids who are suffering or who have suffered from childhood cancer. One in particular, my Ronan. My Ronan who was the love of my life. Who was the most beautiful little boy who ever existed and I’m not just saying this because I’m his mom. Anybody who knows of Ronan and our story, will tell you this. A lot of people know about Ronan because he was that amazing. Did I forget to mention that I too, have a blog? I do, all because of Ronan. As of now, I have 2,264,051 million hits on this little blog of mine. They all know about Ronan, and now, they are all going to know about you too. I am going to post your words below, just so my little blog readers can get an idea of exactly what you have written. I’ll let them decide for themselves, if you are indeed the fuckwad that I have called you out as being tonight.
We apologize if the below post offended some of our readers. We realize that in our zeal to highlight an issue that deserves debate, we may have sounded insensitive. This post was written to provoke debate about the proliferation of products marketed to raise awareness, and we think asked legitimate questions. We believe discussions like this can help focus all our efforts more closely on our shared goal of defeating cancer.
You may have seen in the news that a Facebook campaign is underway to pressure Mattel, the maker of Barbie Dolls, to manufacture a bald Barbie. Cancer is one of, but not the sole reason for this campaign. The group’s Facebook page notes,
“We would like to see a Beautiful and Bald Barbie made to help young girls who suffer from hair loss due to cancer treatments, Alopecia or Trichotillomania. Also, for young girls who are having trouble coping with their mother’s hair loss from chemo.”
To the extent that this effort is about fighting cancer, we should ask ourselves what it accomplishes, who would benefit, and while we’re at it, how about asking if a bald Barbie could in fact do more harm than good for kids and parents, not to mention Mattel.
In a world already littered with cancer totems such as rubber bracelets and pink everything (a limited number of which are from ACS initiatives) , do we need one more thing whose function is to “raise awareness” about cancer? Is raising awareness worthwhile? Over at Mary Tyler Mom, who herself is the mother of a child who died from cancer, the answer is a resounding “no.” She makes the excellent suggestion that a donation of $10-$20 to support cancer research would make far more of an impact than buying a doll.
We know that funding more research is key, and every dollar helps, but who would benefit from sales of these dolls? Would it really be about fundraising?
The downside to raising awareness has been well documented by activists in the breast cancer arena. Awareness of breast cancer, for example, has been so thoroughly achieved, and many women are so afraid of the words breast cancer, that about one in 20 who are diagnosed with LCIS, a condition that may lead to breast cancer, are choosing bilateral mastectomy; the surgical removal of both breasts.
This isn’t to say that awareness doesn’t have an important role in defeating cancer. It can be incredibly important when it comes to informing people about ways to reduce risk or about getting recommended screenings regularly. But there may be better ways to attack childhood cancer. Just like radiation and chemotherapy, awareness must be deployed thoughtfully and carefully.
Childhood cancer is exceedingly rare. I would also argue that cancer is rare among the age group of women likely to have daughters young enough to play with Barbies. Women have about a one in 50 chance of developing any kind of cancer before the age of 40 . Which brings me to the claim that bald Barbies can help improve the self-image of little girls who are faced with having lost their hair, or seeing their mothers lose their hair. If they are mass marketed, many of these dolls will end up in the hands of girls who luckily aren’t likely to be touched by cancer in themselves or their mothers. But could they end up being terrorized by the prospect of it in a far outsized proportion to their realistic chances? There is no reason to create this sort of fear. It’s why we don’t see advocates calling for lightning strike dolls.
My final concern is the no-win position Mattel finds itself in. Last year the company went above and beyond, and made one bald Barbie for a four-year-old who was going through chemotherapy. Now the company risks a severe backlash of ill will if it does not accede to the demands of the social media mob. After all, what is more sympathetic than a little girl with cancer? How could this corporation be so unfeeling as to not make the major investment required to put a new product on store shelves? What happens when the next group demands a custom Barbie to represent its social concerns?
Sadly, some 1340 children under age 14 are projected to die from cancer this year. Each one is a tragedy, and they and their families deserve sympathy and support, but it is critically important to pull back from this exercise in consumer bullying and ask whether the need this movement is rising to meet is as big as imagined, and whether it will result in any meaningful support reaching those who need it.
You totally fucked yourself from the get go when you used the word, “pressure,” in regards to the Facebook campaign to get Mattel on board to make a bald Barbie. Couldn’t you have chosen a nicer word? Who the hell pissed in your cereal this morning to get it off to such a bad start? Nobody is pressuring Mattel to do anything. Some women, came up with a beautiful idea and simply put it on the table. It was such a beautiful idea, that a lot of people have decided to get behind this idea in regards to trying to make it happen. That’s how you get shit done, you presumptions asshole. It’s called passion. It’s called a vision. It’s called a dream. Things that you obviously have no idea about. Things that my Ronan and so many other kids out there will never get to feel because they are being murdered by childhood cancer. MURDERED you Fuckwad!!!!!! Chew on that for a while. Try to swallow that pill without choking on it. And it’s all due to the lack of funding that childhood cancer gets. Because its too sad of a story, because bad things don’t happen to good people, and because their are too many people looking the other way. This is all such bullshit. These kids are our future. We as adults should be screaming the loudest and the hardest for them. They should be the one’s getting the MOST funding out there. I would have traded my life, in a second for Ronan’s but he never even stood a chance and I’m blaming this on our greedy, self absorbed society. Share the fucking wealth. Give these children a voice and a chance! None of them deserve any of this. It’s time to stop looking the other way. I now know this, the hard way. I now know this because I am living proof of what childhood cancer can do to the sweetest most innocent child. I will have to live with this for the rest of my life. I vow to fix this epidemic in this society. So someday, another Ronan won’t have to die. What do you plan to do about this Mr. Andrew Fuckwad Becker? Besides be blinded by your ignorance? I really hope you choose to wake up and be part of this change. I really hope you take this opportunity to take this wrong and turn it into a right. I really hope you change your insensitive ways. I really hope you prove me wrong and make me eat my words to you.
With your pea sized brain, Mr. Asshole Fuckwad Becker, you asked 3 little questions. The first being, “What would having this Barbie made, accomplish?” Look dude, I’m no rocket scientist, but are you even serious with this question? My 8-year-old could this answer question, in his sleep. A better question my be, what WOULDN’T this accomplish? It could accomplish SO MANY THINGS. It could bring the awareness to childhood cancer that it deserves so that one day, maybe a parent will not have to watch helplessly as their child dies. Awareness=Funding and Funding= CURES. The survival rate of breast cancer is proof of that. Even if the making of this Barbie, only accomplished something so small, which is actually huge in my eyes, such as making one child smile…… well that is good enough for me.
Your second question is actually a good one because so many people are so unaware of where the money goes in which they are so generously donating. So, where would all the money go? I have no idea and I don’t care as long as it goes 100% to the research that is actually going to make a difference. As long as it may actually save the life of a child. I selfishly want it all to go to Neuroblastoma, which is what my Ronan died from. It is actually one of the least funded pediatric cancers, but in my mind it should be the one funded most. Obviously I am biased because of my Ronan, but if you had been his parent, you would understand. I have a question for you, Mr. Asshole Fuckwad Becker. Where does all the money go that the American Cancer Society raises? To CEO whom I’m hearing, makes about a million dollars in compensation per year. I know where it doesn’t go. To helping fund and support pediatric cancers. This makes me really sad. I have friends who worked really hard to raise money for the Relay for Life this past year. I will NEVER in my LIFE, support this organization unless some serious changes are made such as supporting childhood cancer. I am not going to support an organization that uses the money to pay overhead, salaries, fringe benefits and FUCKING TRAVEL EXPENSES. I will NEVER support a organization like yours again, Mr. Andrew Fuckwad Becker. I hope my lovely little blog readers will choose to follow my lead on this one. They are pretty amazing and I also know they are pretty pissed so I am not worried about them. I know they are able to sleep at night due to knowing that they are going to help be the change in childhood cancer that we so need. It takes an army, you know. And I have a really, really great army behind me. You, on the other hand may need a long, exotic vacation somewhere in order to sleep again. Please be sure to have an extra margarita, on me. But I won’t be paying for it out of my son’s foundation. I’ll be using that money, to actually make a big dent in this neuroblastoma world. Because due to my son dying, I get to make the world a better place. Lucky, aren’t I???
Your 3rd question is just as stupid as your first. Pull your head out of your asshole, and think about this. I’m pretty sure by now, you can come up with the reasons why the making of this doll, would not harm anyone as long as the proceeds go to the right places. I never knew making a child smile, could hurt someone. Childhood cancer has been ignored for long enough, which is why children are still dying from it. If you are too ignorant to answer this question tonight, Mr. Asshole Fuckwad Becker, I’ll make it easy for you. Ask yourself this. WHAT IF IT WAS YOUR CHILD???????? Awwwwww!!! Did a lightbulb just go off in your head? Did a tear just slide down your cheek?! I doubt it. Because you don’t have a child with cancer and you never will. But guess what? I hate to be the bearer of bad news but it can happen to you. It can happen to anyone!!!! I wouldn’t wish this on anyone or any child. But FUCK. If something like this does ever happen to you or anyone that you know, you are going to feel like the worlds biggest prick; and rightfully so. I hope you know by your little post today, we can all read between the lines. What you are actually saying is, “DON’T RAISE AWARENESS! KEEP KILLING OUR KIDS!” Way to go, Mr. Fuckwad Andrew Becker. I hope you feel like a winner tonight.
Alright Mr. Asshole Fuckwad Becker- I’m going to end this post tonight. Trust me, I could go on and on and on about your dumbass post but I’ve grown tired of you. I’m going to let my lovely little blog readers, handle the rest for me. I’m sure your inbox is being bombarded with emails at this very moment. You’ve now taken my night, and hijacked the writing I get to do to my dead son, due to this “rare disease.” For that alone, you can go and fuck yourself. And no sweet dreams for you. Only for Ro. Always for Ro.
Sincerly in the nicest way possible,
Maya M. Thompson
TO ALL MY LOVELIES,
Here is some more information about our dear new friend, Mr. Asshole Fuckwad Becker. Feel free to let him know your opinions, whatever they may be. I’m sure he’d love to hear from you.
Andrew Becker is Director of Media Relations. He is the New York-based member of the national media relations team. His work includes all patient and family services offered by ACS, as well as global health, corporate finance, and supporting the overall brand. Before joining ACS, Andrew spent a decade using his political communication and public relations training for good instead of evil. He was involved in the first few years of the American Legacy Foundation’s truth campaign, as well as other tobacco prevention work, and counts projects for NIH and the Ad Council among his proudest professional achievements. Andrew is a father of three, so he expects to be working for decades to come. E-mail him at email@example.com.
Ronan. I think I thought last year was a hard birthday for me to celebrate. I’m pretty sure I bitched and complained about it. I wish I would have known then, what I know now. That last year, was the best birthday of my life. I know we were in the hospital. I know we spent the day, in your bed, cuddling and playing Star Wars. I would have given anything, for that day today.
My birthday is almost over. Thankfully. I expected it to be hard. It was a day full of ups and downs. You would not believe all the beautiful things people did for me and said to me. It was a day where I had so many people try to make me smile. I smiled over a few things. It was a day full of lap dances, Miranda dances, Purple, Skulls, kisses, hugs, tears, phone calls, text messages, FB messages….. and so many beautiful people. Want to know some of my favorite things that I got told? I have a few that I can remember. Someone told me how it was just another day, right? And 2011 was officially the worst year ever. I exhaled when I read that. YES. THANK YOU. I’m being serious too, Miss J. I so appreciated your honesty. Somebody told me, “Happy Fucky Birthday!!” I laughed over that one. Thanks Sarah. Somebody wrote to me, “Happy RObirthday!” I loved that one. I got a lot of “Happy Fucking Birthdays!” I of course, loved those too. The card above is from one of the sweetest souls I’ve never met but I hope to someday. Her card made me smile from ear to ear. Thanks, K.
I spent the day trying to be kind to myself. Something that is hard for me to do now. I spent the day, just trying to get through the day, without you. I couldn’t believe I had to spend my birthday, without my best friend. I worried about you a lot today. I missed you so much. I cried a lot. I just wanted to today to be over. I told your daddy that I was so mad that I was having another birthday, and you were not. Dr. JoRo texted me to see how I was doing today. I responded back to her, “Bloody fucking fucking mother fucking awful. Shaking a lot. Going to try to run some of this off.” She said her birthday was always hell for her too. She said she was going to do some sort of kindness act for you tonight. That made me smile. I went for a run. It didn’t stop the shaking of my hands. Nothing does.
The whole not celebrating my birthday did not work either. It turns out…. the lovies in our lives were not having it. So the day and night was filled with more I love you’s, than ever. Your daddy picked up your brothers from school for me. My mind was in one of those moods today where it played tricks on me. I had myself convinced that you were going to come running through our front door yelling, “Happy Birthday, mama!” I sat and watched out the window for your daddy’s car to appear with you and your brothers in it. I imagined how you would all tell me that this was indeed a sick joke and you were alive and well. I imagined your daddy telling me he had brought you back to life, for my birthday. I know you know how this turned out. None of this happened. Not any of this, came true. Your daddy and brothers took me to AZ88, one of my favorite restaurants for dinner. I blew out my birthday candle. I made one wish. The same one that I make 50 times a day. I hoped, wished, and begged that you were safe. I put on my best face and thanked your brothers and daddy for such a nice birthday. We came home and we all snuggled in our bed and watched part of a movie. Quinn asked if the two of us could sleep in your bed again tonight. I told him o.k. We snuggled up, I kissed him goodnight, we said goodnight to you, and he soon fell asleep. I’ll sleep with him in your bed again tonight. It makes me sad that your bedroom is so empty now. I feel so guilty that it is so sad and lonely. I have been sleeping in your room just to mess up your little bed and to cuddle with all of your Master Yoda‘s and monkey friends.
I ended tonight with a phone call from one our favorites, New York Miss Macy. Fucking fuck I miss her. The phone call started off with me crying so hard, that I couldn’t even talk. It ended with us both in fits of giggles. Her ability to bring the laughter and sunshine out in me is a gift that nobody else has the capability of doing. She asked me what I was going to do in NYC. She asked me if I was going to visit Sloan Kettering. I told her I didn’t think so, unless I wanted to end up in jail. I told her I was pretty sure they had me on a watch list, after the letter I sent to Dr. Kushner. We cracked up at the thought of me wearing disquises, in order to get into the hospital. She said she knows I could pull off some awesome mustaches. We cracked up at the thought of this. She misses you so much too.
I’m going to end this tonight now, Ro. I miss you so much. I’m so sorry. I hope you are safe. G’nite, sweet dreams, I love you.
Dear Loveliest of Lovelies,
Thank you all. For being so kind, sweet and thoughtful. Thank you for taking the time out of your day, to wish me a Happy Birthday, Unbirthday, Fucking Fucked Birthday, not a birthday, a Wild and Free Birthday, a RoBirthday, and all the other creative things you came up with. You made me smile through my tears. You made me feel loved. You made me actually feel which is hard for me to do though all the numbness. You all are the best RoFriends a girl could ever ask for. I know Ronan is so thankful for all of you. So am I.
I love you all.
Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.
After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.
I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.
I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.
I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.
Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399
Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.
I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.
Model submissions will begin Monday, October 3rd, at 10 a.m. and end on Friday, October 7th at 7 p.m. Applications must be filled out by the child at the Garage Boutique for Kids and “Rockstars,” must be an Arizona resident. We would like the kiddos, who want the chance to be participate, to be old enough to sit down and fill out the application (it’s o.k. if they need a little help;). The model lineup will be announced Sunday, October 9th, via the Garage Boutique Facebook Page through a live, random drawing. Each model selected will be required to raise a minimum of $200.00 dollars to help in the fight against Pediatric Cancer.
Please save the date of November 10th, 2011 at 7:00 p.m. for this Rockstar Event. Tickets will be available to purchase for $25.00 dollars, per person, after our models are selected. Your ticket purchase will get you into the event, to watch the Fashion Show, and enjoy all of the other surprises we are putting together. We are working very hard to make this night a very fun filled family affair, for all ages. All inquiries regarding this event should be submitted via email to firstname.lastname@example.org
Additional details to follow soon. We are can’t wait to see you all for a night full of all things Rockstar!!!
Has these in! Stop by, FB, or call her. She’ll ship for FREE!
Click on her FB page and you can order them that way……https://www.facebook.com/katie.garage Be sure to *LIKE* her page as well.
Call her store….. 480.556.6900
Or stop on by….. 7144 E. Stetson Drive, Scottsdale, AZ