Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

Whipped Cream Kisses for Dessert

Ro baby. What in the world happened last night and today that I can exist on only 4 hours of sleep, like it’s no big deal? Oh, I know….your death. This coming from a girl who used to easily sleep 8 to 10 hours a night. Sometimes 12. I was totally that girl, that mom, that me. Not anymore. The peacefulness of sleep is hard to come by, especially on nights like last night where nothing out of the ordinary happens; just reality. Last night I fought sleep until 6 a.m. I did a lot of talking to myself, played a lot of musical beds, sent some emails, posted some stuff on FB about zombies and how 4 a.m. sucks. 4 a.m. sucks, but 6 a.m. when the birds start to chirp, is even worse. 6 a.m. and you know enough is enough, so you pop an Ambien because nothing else works. I slept from about 6:20-10 a.m. I got up, showered and my mind was racing with things that I needed to do, for your foundation. So much stuff that it was making my head spin. I went to my little Starbucks office and worked away not even feeling the hangover from the lack of sleep. I was really productive during my hours at the Starbucks office, despite the extra annoying, really bad soft porn music that blared from the speakers. I got recognized by a RoFan of yours which I was really surprised by because I only go to this Starbucks for the reason that I won’t run into anyone. It’s my secret Starbucks office where nobody knows my name. Or so I thought. Today, this girl was sitting by me for a while with a boyfriend or boy friend of hers. They got up and left and I was so into what I was doing, that I hardly noticed. A minute later I noticed the girl as she came walking back through the doors and headed straight for me. I looked up just as her soft eyes asked if I was Maya. I smiled and said yes. She told me she reads this blog. I asked her how long she had been reading it for and how she found out about you. She said she heard about you when we were on Channel 12, about needing an airplane to get you to New York. Whoa. What a sweet, loyal dolly. She’s been reading for a long time. She told me how sorry she was. I tried not to get choked up as I looked into the eyes of this girl who I swear could have been 17. I gave her a bunch of your bracelets and RoCards. She seemed so nervous and shy. I told her thanks for saying hello. I meant it. She made me smile.

Margarita stopped by the F U Cancer Starbucks office to say hi and help me with some things. Turns out, by the time she arrived my brain had turned to mush. I’m pretty sure she was looking into the eyes of a zombie but she still managed to make me laugh. A real laugh too which only a few people in my life seem to be able to make me do anymore. She being one of them. I had filled out an application for something (which will remain TOP SECRET classified information until more comes of it) and my application totally sucked balls. I filled it out last night during my insomnia marathon. Margarita looked it over and goes, “Yeah… I think we can do better than this.” HA! There is nothing I appreciate more than someone who can tell it like it is. She may have saved our secret mission today because if I would have actually sent in what I had filled out, I can guarantee you it would have went right into some fancy NYC recycling bin. Thanks, Rita. Rawr! You are a RoSaver! The rest of the day/evening was spent with your Luke, Daddy and brothers. We all went to the batting cages and hit some balls. I tried to enjoy it but as you know, when going to places like this I am constantly looking over my shoulder for you to appear. I don’t think I’ll ever stop looking for you. I watched your brothers as they ran around full of so much love and life, just like they should be. I closed my eyes and imagined you were there with us and for a split second, everything in the world was perfect. Simple perfection was ripped to shreds by the reality of Hell when the giggles of a child nearby forced me to open my eyes, just to make sure it wasn’t you. It wasn’t. Fucking fuck.

These are the things I’ve seen in the past 24 hours that I just can’t deal with because it is as if salt is being poured into an open wound. The real world. The real, non bereaved, I didn’t lose a Ronan and you did world. A lunch in the middle of the day at your favorite restaurant. A lunch with the best company in the world. A new friend and an even newer friend on the most delicious day (sunny. breezy. chilly. not rainy. sunny was delicious before you died) We sat outside as the breeze whispered in my ear and I swear I could hear your voice. My eyes gazed up from the menu only to fall on the table nearby. A mom. A dad. A little boy, around 3. A new baby. The little boy, roams carelessly around the tables. Almost in a mocking sort of way that only a grieving mother would feel. The parents look on, and drink their bottle of wine in the middle of the day. A whole big bottle of red wine. Another one is ordered. They pay no attention to the little boy as he wanders off, far off. Not far enough to get swiped up, but maybe….. it could happen. But the mom and the dad are so calm, so clueless, so free that they don’t mind. They trust in the world that the fates will be kind as they let their child wander about. They look as if they don’t have a care in the world and their big bubble looks oh so delicious. I watch with my blood-shot eyes, worrying……..over what? I’m pretty sure the cancer grim reaper does not live at Chelsea’s Kitchen. Hey! That’s too far! Hey! He’s talking to strangers. But the strangers just smile and laugh. He’s so cute they say. The mom and the dad don’t really reply, they look up and smile instead at the strangers almost in a conceited sort of way. They gaze into each others eyes as they’ve just had the best sex of their lives and now they are going to drink more wine and do it again. Their children certainly don’t cramp their style. They are so mellow and laid back. I’m pretty sure the VW bus strapped with surfboards on the hood and the California license plates, belonged to them. They continue to drink the wine. The little boy returns to the table. The mom orders dessert. The little boy goes back up in his high chair. So high. I watch as he eats the whipped cream with his mama. I watch her kiss it off of his lips, they way I used to kiss it off of yours. She asks for more wine. She is tiny, I think to myself. How can she drink so much wine? Don’t they have to drive home? Oh, how I hope they walked. But even that scares me. They have a brand new little baby, too. I’m confused. Wine. Toddler. Baby. Middle of the day. Smiles all around. Is this really real? Who lives this reality? It certainly isn’t mine. Is it everyone else’s, but mine? The little boy finishes his desert. He isn’t strapped into his high chair. He stands up in it and nobody cares. Or maybe it is that thing they seem to have going on where they trust in the world so much so they just know everything will be o.k. What’s that like? I can’t remember. He stands up and I start to count. 1,2,3,4,5…………. Hey! How is that allowed? He could fall! 45 seconds later and he almost does. But his mama swoops in to catch him right before the waitress does. The waitress gives a nervous giggle. The mom does not. She giggles as if something was truly funny. How is she so carefree, I wonder? Must be the flower in her hair. The long, flowy childlike hair. My lunch dates watch this interaction as well…. but not as closely as I do. I am borderline, obsessed. I would have never been so carefree with Ronan in a restaurant, I think to myself. I would have never let him wander without keeping my eye on him every single second. I would have never let him stand up in a high chair for 45 seconds only to catch him right before he fell. I would have never drank 2 bottles of wine, in the middle of the day. Or ever. What’s their secret? Because clearly they have the key to happiness. It was all over their smirky faces that were saying to me, you have a dead child and we do not! Sucks to be you! Or maybe they really do but I’ll never know. I know I cannot truly know the story of this family by my 60 minute observation. But in my mind, the story that I had made up in my head, was too much to take. After the almost high chair falling incident, I looked up at my 2 new friends like a deer in headlights. I’ve gotta go. This is giving me way too much anxiety. They both knew it and we quickly up and bolted. After paying, of course. Thanks, Rita;) I left your little restaurant, and that family behind yesterday. But not without feeling the stings from the open salt wound that is now my heart.

That’s my story tonight baby doll. It’s late. I’m tired but not really. I will try to sleep. I love you so much. I miss you. I hope you are safe. Sweet dreams. G’nite.

xoxo

I miss him

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!

Dear Mr. Andrew Fuckwad Becker of the American Cancer Society

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.

Bald Barbie Demand is an Over-Reach

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

Ronan’s mama

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 andrew.becker@cancer.org.

Baby Danger Plan….. Activate!

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
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

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.

7 Months but who’s counting? I am. I always will be.

Ronan. I wrote to you. On your 7 month day. I wrote to you around 2:30 a.m. May 9th was just 7 months ago. Feels like 7 years. I couldn’t sleep at all that night. I ended up making your daddy give me something to help me sleep. The screaming in my head wouldn’t stop. It stopped and I fell asleep. I don’t know where everything I wrote to you went , as it is not here anymore. It’s probably best that way. I’m sure what I had written down, wasn’t pretty. I’m not sure where the week went. It was busy. Non-stop. I’ve been a very busy mama. I had a meeting at T-Gen. They were kind enough to meet with me so I could get an idea about what it is, they are doing in regards to Neuroblastoma. I wanted to see what they are using the 4 million dollars that Dell has given them for. They are working with Dr. Giselle Sholler, whom you know I am very interested in. I have been reading everything about her that I can possibly find. She is on to something big. I look forward to the day I can meet her. I look forward to the day that she can retire, because she is going find a cure for this nasty disease. I sat in a room full of these people from T-Gen. I had to tell them all, a bit about your story. I’ve never really talked about you, in front of a room full of strangers, Ro. I much prefer hiding behind my computer. Glasses on. Hair up. No make-up. Music blaring. Did you see me? The way I was only able to give them the generic basics about what happened to you? The very business like story. I had on my best business like boots. My best business like jacket. My best business like face. Game face on. Because I knew if I said what I really wanted to say, that I would have ended up under the table, sobbing like a baby. How do you tell a room full of people, what you really want to say? How do you tell them the way the love of your life, was ripped out of your arms and how hard you fought to help them beat this disease? How you fought with everything in your entire body, only to fail. So clearly, I failed as a mother because I promised I’d save you, and I didn’t. How do you tell them the way you watched your child die, will haunt you for the rest of your life. So much so that most days you walk around feeling as if all the air has been sucked out of you. How you are now filled with such guilt and shame because you are certain you chose the wrong path for your child. Because if the right one had been chosen, you would still be here. Death would not have been the outcome, right? I know what you are saying. That this is not the case. Because if there were ever 2 parents, who knew this disease inside and out…. it was us. If there were ever two parents, who tried their hardest…. it was us. If there were ever two parents, who loved a little boy the most…. it was us. But it was not good enough Ronan. We failed. I hope I don’t always believe this, but the grief thing is still blinding me and beating me to a pulp. So much so that I have bruises all over my body and I have no idea where they have come from. The funny thing is, these bruises appear and I don’t even feel them so I don’t notice them until I look down and I see a huge black and blue mark on my leg. Or my arm. I just assume I don’t feel them, because I don’t feel much of anything anymore.

So, the meeting at T-Gen I took your Mr. Sparkly Eyes with me. I am so thankful he went as he has a way of knowing how to put my thoughts into words, without me having to say anything at all. Because he was there, though all of this. He watched the way this played out. He saw your smiles, listened to your laughs, watched my tears, listened to my screams, at sat back, helplessly, when there was nothing left to do. His insider’s/outsider’s perspective on this was useful as well. I get that I am the emotional mommy who just lost her son. He was able to play the role of the level-headed, logical one who loved you as well…. but not in the way that a mother loves her son. As soon as we left T-Gen I got the talk. The one that he is so good at giving. The one that went something like, “This is it. This is what you were meant to do. I don’t care how hard this gets, I don’t care how much you want to give up. You cannot. Do you hear me? You cannot. This is it. You are going to change this so that one day, when I am gone, you can look up there and give me a little wave and tell me you did it.” I couldn’t even reply to that one. I only choked back my tears and said something like, “Where are you going,??” Which in turn ended up in the,”I’m not going to live forever talk.” The one I choose to ignore, every time it comes up.

From T-Gen, I went home. Wiped out from the day. I had a board meeting to go to though so I had to man up as they say. I was dreading it. Our last one was a disaster. It was so painful and everyone was on edge. I expected this one to be the same way. It wasn’t. It was lovely, but long. 3 hours long. It ran really smoothly and all of our concerns were addressed but in the most loving way possible. After we wrapped things up, I looked around the room and felt a wave of warmth wash over me. Like something very big and magical was about to happen. All because of the women that I was surrounded with whom were all there for one reason. Because of you. Because they believe in you and they know they are going to be a part of something so beautiful and true. Something different and unique. Something that is going to change their lives…. for the better. They believe in you. They believe in me. That is more than I could ever ask for, Ro. I felt you all around us that entire night. Thank you for that, baby. I really needed that in the worst way possible.

I spent that next day, feeling pretty beat. I think the whole not sleeping thing, the T-Gen meeting, the board meeting, and not seeing Dr. Jo, caught up to me. Thursday came and I tried my very best to suck it up and carry on with the world. Mandy Bee spent the morning with me, doing distracting things. I was out with her for a couple of hours. I knew I was going to crack. I looked at her and told her that I needed to go home, as I was feeling like I couldn’t handle much more of the real world for the day. She took me home, helped me with a few things around the house and played the role of the best jewish mother that I have come to love, so much. She told me she could stay if I needed her to. I gave her one of my best bullshit smiles as she calls them and told her it was o.k. I needed the quiet time. I knew what was about to happen and I just had to give into it. She left. I crawled into bed and sobbed the rest of the day. Thankfully, Liam and Quinn stayed the night with Mimi and Papa so I didn’t have to put on a show for anyone. I got up to run to an appointment. I came back home. Your daddy and I were supposed to go to a concert. He came home. He saw my puffy eyes. I told him, I couldn’t go. I told him to please go without me, to have fun with his friends. I could tell he needed to blow off some steam. I told him I just wanted to stay in bed and be sad. I don’t do that often enough. I was in no mood to go out in public and pretend. Your daddy went. I stayed home. I cried for 15 hours that day and night. I cried for you until I could take no more. That’s when I had to take the little magic go to sleep pill. I thought all of that crying would have knocked me out. It didn’t. The screaming in my head and the silence of the house were too much to take. I passed out. I woke up feeling o.k. 7 months had arrived. I just had to make it through the day.

I had a busy busy busy Friday. I saw Dr. Jo. It was good. It’s always good. I had a lunch to go to after I left her. A lunch that turned your very sad 7 month day, into a very sweet day instead. I met with a new friend. I say new friend, because I have a feeling about this new person. You know that feeling when you meet somebody and you just kind of go, oh hello person I feel like I’ve known my entire life, but I’m just meeting for the first time, today. That is how I felt when I met this person. Her name is Kristi. Kristi Michaels. She knows that Rock Star person we talked about in a few posts before this one. She knows him, very, very well. She knows him, better than anyone. Hellos were said. Hugs were given. We hopped in her car where we sat for a good 20 minutes before leaving for lunch. We sat and talked. I guess we more cried, than talked. I was a mess. She was a mess. We sat and she listened as I told her about you and this sad story that nobody wants to hear about. Because childhood cancer is just too sad so people would rather ignore it because if you ignore it, surly it will go away, right Ro? Bullshit. Somewhere in the middle of all the tears, Kristi said Bret wanted my permission to do something in honor of you. He wanted to ask my permission to have a room at Barrows Medical Center, where he was treated for his brain aneurysm, named after you. Built for you. With your little face, smiling down at the kids below. A play place for the kids to go. A safe and happy place full of all things wild and free. Because you are that beautiful, Ronan, that nobody wants to forget your face. Kristi and Bret and going to make sure that you don’t get lost in all of this. They want to help make sure to help spread the word in any way possible, any way I need or want. This is just the beginning of great things to come. They know that it is not acceptable for kids to be dying of cancer due to the lack of funding and awareness. You should not have died. You just should not have, Ronan. This was not the way this was supposed to turn out. But for fucks sake, it did. And I swear to you, I’m not going to stop telling your story until people start to listen. And things start to change. Kristi was crying when she told me about this. She was also crying when she told me that Bret wore your bracelet in his Pet Smart campaign. And also, in their Christmas Card picture which she gave me while we sat in the car. I opened up their Christmas Card. This was after my little rant about Fuck the Holidays and Fuck Holiday Cards. I smiled when I looked at the faces on the card. I smiled because it was at that exact moment, that I knew that this family, staring back at me, was truer than true. It wasn’t a FAKE or PHONY holiday card, Ro! It was them. It was who they are. It was everything Rock and Roll and Love combined. Their card, told their story and no words were needed. Music. Tattoos. Dogs. Black. Dark. Edgy. But soft too. Smiles. And the best thing of all…. one of their little girls, is wearing a Santa Hat with little Devil Horns sticking out of the top. The exact kind of Santa Hat, I would have put you in Ronan. I smiled at this Christmas Card. It made my day.

We left for lunch after we composed ourselves. It was the kind of lunch where you find out you have a lot of things in common. Small town girls. Big city dreams, but small town girls at heart, forever. A love for nature. A belief in true love. How you both think, being a mom is the best thing ever. How you both believe in raising your kids in an open and honest world. Sometimes maybe a little too honest which others judge. You both tell those people, to fuck off. Because at the end of the day, you both know that as long as you are true to yourself and your family, nothing else matters. Because fucked up things happen everyday like kids dying. And you never know when everything could change in an instant. So you’d better make the best of this time by being true to where your heart leads you. Especially if it is wild and free. The best adventures are wild and free…. right baby? I know you knew this from the second you were born and it was the way you lived you life every single day. I cannot even begin to imagine the things you would have done in this world, Ronan….. had you been given the chance. At one point during lunch, my passion for you took over and I was blabbing about how I much I believe in you and how I refuse to do this any other way than the way that my heart is telling me to. The way, you are telling me to. I don’t remember exactly what I was saying, but Kristi looked at me and goes, “You remind me, so much of Bret.” This caught me off guard but in the best way possible. She then went on to tell me how if Bret would have listened to all the people in his life, telling him he was going nowhere, how he couldn’t sing, etc….. that he would have ended up a truck driver. He was told no, so many times. He didn’t listen. He kept going. He chased his dreams. He broke downs all the doors that were slammed in his face. He ignored all of the asshole people who for some sick and twisted reason, thrive on keeping others down. He is proof that if you believe in something enough, anything is possible. Anything. Even a cure for this fucking disease that killed you. A CURE. I said it. Dream big or go the fuck home.

After lunch, the 7 months since you left me lunch that actually turned out to be a beautiful day….. thank you, Kristi<3<3 I ran back to Dr. Jo’s. We had another little session with some of our lovelies, Ronan. I think they have been having a hard time…. trying so hard to understand all of this. They both just want to understand so badly what it is that I am going through…… and for as hard as they have been trying, I think they feel lost. I felt like Dr. Jo could make a little sense of this, more so than I can. I’m too caught up in it all. She is the expert not only experience, but education as well. Dr. Jo was sweet enough to meet with all of us, so she could listen to their concerns and she did her best to let them into the world that I now, live in. I think it was helpful. I hope it was to them. It was the least I could do. I know I say I want to be alone and push everyone away. Sometimes that is true. But some days it is not. I don’t want to lose everybody in this process. I want to make them understand even if it is just a tiny bit, without having to go through something like this. I don’t know if that is even possible, but I feel better knowing that I am trying when all I want to do is give up and not care. I care. I know I do. I’m too loving of a person, not to.

I took Mandy Bee barefoot hiking today with me. Because we are badass. I didn’t hike up the mountain. I ran. Barefoot. Take that, mother fucker cancer. I’d like to do it again, tomorrow. I didn’t feel a thing. Dr. Jo is leaving tonight for a week to a silent mediation retreat. I have been panicking. She sent me a text before she left. It said for me to please take good care of myself while she is gone. How she needs me as she can’t change this world, on her own. She’s not going to have to. You will help her, my bravest little boy. I know this.

Has this turned into a novel tonight or what? I’m sorry. That’s what I get for not keeping up with you. I hate the nights that I don’t write but my head has been a mess. I have much more to say, little one but I need to get some shut-eye. I’m feeling tired, which doesn’t happen naturally very often anymore. I miss you. I love you. I hope you are safe. I’ll forever be sorry.

G’nite baby doll.

xoxo

The Guest House
by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

Is it possible to Die choking on your own Tears?

Ronan. Days are filled with emptiness. They are not getting easier. Nights are worse. Halloween is approaching. How am I supposed to celebrate our favorite holiday, without you? If you were here, we would be going to your school tomorrow to celebrate. I would be tucking you into bed right now, but you would have been too excited to sleep. I’m sure you would be dressing up as someone from Star Wars. It was our tradition.

Baby Ro- Chewbacca. 2-year-old Ro- Master Yoda. 3 Year old Ro- Captain Rex. Who would it have been this year? I’m not sure. Does it matter? It does to me. Halloween cards come in the mail. But nothing for you. I lose it. “What the hell?” I scream! “Did he not exist?!” “Is he that easy to forget?!” The hot tears stream down my face. ” I want a card for him, too! Not just 2. 3 little boys. I HAVE 3 BOYS! I want him back! NO! I DO NOT WANT A PUPPY OR A FUCKING BABY FOR CHRISTMAS! I WANT RONAN! I ONLY WANT RONAN!”

I don’t get to go to your school tomorrow for your Halloween party. I get to go to only Liam and Quinn’s. How am I supposed to put on my bravest face to handle tomorrow? I don’t have a choice. I have to do it for them. I had Quinn’s conference this week. His teachers words….”He is a gift to me. Such a delight. So kind to everyone. Excelling in everything. Needs a little work on his handwriting. He is off the charts in his math….” I felt like I was in an alternate universe. I looked all around the classroom at all the kids’ work. I started to cry. I apologized to his teacher. “I’m so sorry. I have no idea what’s been going on in this classroom. I’m usually the mom that knows it all. That is always helping. I haven’t been in here once this year.” She just looked at me and said that it was o.k. That I have a pretty good reason, not to be. But I don’t want a reason or an excuse.  I just want my life back. I want to be the fun classroom mama again. I don’t know how the fuck I’m going to get through tomorrow. I have thrown up all day about it. I want to go to your school. I want to dress you up. But some evil mother fucker out there decided that you brought me way too much happiness in my life, so you had to go away. But I didn’t do anything wrong to have you taken away. I only loved you so much. That is the only crime I am guilty of committing.

I went to Sedona on Tuesday. Dr. Jo couldn’t make it to Phoenix this week, so I drove up to see her. We did our session at her house and then went and grabbed lunch. It was a long but peaceful day and night. I was able to smile and breathe a bit. I know you know why. You always do. I came home, relaxed and fell asleep all night long. My sleeping has been better. I have not taken my Ambien since the night before I left for my Sedona Grief Retreat weekend. I have been able to fall asleep and I have been staying asleep until about 2 a.m. I always wake up around this time and than, the pacing begins for about an hour or two. I look for you everywhere. I scream into pillows. I cry.  Dr. Jo says it’s my animal instinct taking over. I’m like the mama tiger at the zoo, who has been separated from her baby. The mama tiger paces back and forth. Sometimes she even chews off her own limbs  because she goes crazy not knowing what to do without her baby. I feel like that mama tiger. I’m trapped on the inside of the glass cage, looking for you, watching as everyone on the outside just goes on with their lives. Everyone is happy. How can that be? What? You have a new boyfriend? No. I don’t want to meet him. I want you all to go away. I don’t want to see life go on. I want life to end. I am incapable of feeling the happiness that you feel. That you deserve. I cannot be happy for you. So, please just let me be. I have nothing left to give anyone. I am doing my best to keep myself alive. That is all I am capable of now. Forgive me. But Ronan died. Doesn’t anybody understand? How is Halloween not canceled this year? How is your school, celebrating like it is a normal year? Don’t they miss you so much, that they shouldn’t? No. Only in my mind should they. Because to me, you were so special that the whole wide world should stop. But nobody misses you, as much as I do. Which means that nobody is even capable of feeling the pain that I feel. Which means that nobody loved you more. Which is why I physically hurt so bad 24 hours a day, 7 days a week. I don’t get a break from this pain. Ever. Not that I would want it. I wouldn’t give this pain to anyone else. It is mine to carry for the rest of my life because it reminds me every second of the day how much I love you. How much I will always love you. So much that I often think I am going to choke to death, on my own tears.

This week has been a blur. I took your brothers to a park to play after school. They had the time of their lives. They played football in the rain, with some other kids. I could have sworn you were right there with them. I cried on the way home because you weren’t. I told your brothers how sad it made me that you were not there, with them. How much you would have loved it. They were both covered in mud, soaked from head to toe, just like they should have been. Where are you? Who are you playing with? How is it not us? Why is it not us? Do you think I killed you? I was supposed to keep you safe. I promised you I was going to get you better. But then you just died. Just like that. How am I supposed to live with this, Ro?

I don’t know. I don’t fucking know anything anymore except everyday without you is harder and harder and who the fuck came up with the saying that the pain will get easier as time goes on? I know who. Some jackass who is not a mom. Probably some asswad fucking fuckwad scientist who had to bury their cat. Clearly it was not a mom. Or a dad. Who’s almost 4-year-old died.

I don’t know what else to say tonight. Except what I say to you, every night. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams, babydoll. I love you.

xoxo

P.S. Dear loveliest of lovelies:::::: So many of you sweet peas have sent the most beautiful gifts. A lot of it, pretty jewelry for me to wear. Please know these things, always make me smile. Today, I wore one of my new favorite things. A little delicate gold necklace that has, “Fuck Cancer,” inscribed on it as well as a small purple jewel hanging from the chain. Oh, how I proudly wore this today. Thank you, from the bottom of my heart. xoxoxoxo a million times over.