30 day challenge of mother fucking madness

 

Ronan. The 30 day yoga challenge. I have a friend who is crazy enough and actually did this. Kudos to D. She is crazy in all the best ways. And she loves her yoga. I do not love yoga. I am quite sure, if I were to try to contain myself in a calming, peaceful environment of yoga, that I would go all turrets on their asses and start freaking out/screaming/crying/puking about how I have a fucking dead kid so NOTHING is Zen, NOTHING is Ommmm and I would like to beat the bloody hell out of the Chakras that surround me. I’m pretty sure I would get kicked out of a yoga class, while offending everyone which does sound pretty badass and dangerous… so it’s a little tempting. If I didn’t respect the whole yoga thing so much, I would totally do this. But I secretly love yoga. I’m envious of those who do it, love it, and are better people because of it. I used to love it, Ronan. Before all of this. Now… I’m just not ready to go back.

I’ve come up with my own 30 day challenge, instead. I started it on Monday. It’s called Maya’s 30 day challenge of mother fucking madness. And the weather is getting hotter, which makes it even better. I spent 3 hours on Monday and 3 hours today, hiking/running/puking/crying/spitting/tripping/getting a rad tan. Skin cancer here I come!!!! I’ve decided to have 30 days of hiking for 3-5 hours a day in complete and total silence. I’ve already told your daddy, that it’s 30 days of solitude. 30 days of not talking to anyone because I’m really on a retreat to Italy/India/Indonesia like that Elizabeth Gilbert wah wah wah, my life is so bad, chick. When in reality, your life is freaking awesome lady. Plus, you got to travel to all of those places, solo, and figure your shit out. Unfortunately, I cannot do that, due to having a thing back here called 2 babes to take care of and a husband. This is my modified version of your little trip, Elizabeth Gilbert or whatever your name is. I think I totally have a one up on you though, due to having a dead kid, so kudos’ for that! One of those little silver linings in life that just makes everything o.k.! I am being sarcastic. Because I am in a pissy/sarcastic mood.

So, I started this on Monday and so far, I have not died. I have visions of dying out there though due to the heat/rattlesnakes/weird scary men that appear out of nowhere! when I am in the middle of nowhere!, alone! Rita! I freaking told you I needed a machete! You are going to be really upset if I get attacked and have nothing on me, to protect myself! I have many reasons as to why I am doing this. One being because if I don’t, I quite simply will stay barricaded up in my house, in my bed, crying. Two being because I need to be with you, Ronan. And being alone, hiking is where I feel closest to you. Three being I need the quietness in my head, or to deal with the screaming in my head by talking to Inferno Fuckwad Bob, alone. My head feels foggy. It feels less foggy when I am out, being active and dealing with this grief but in my way, the solitude way. Isolation. 30 days of intense hiking/isolation/how the fuck am I going to get through this? You’d better start figuring this out. You’d better start taking some control of some things. You’d better start because Ronan, as you told Dr. JoRo, in her dream…. “I can’t get to my mom, because she’s too angry. Tell her that, please.” She couldn’t tell me that for a while. She just told me that, last week. She has watched me struggle with this anger. I told her I was less angry and just more sad now. She decided that it was the right time, to tell me the last thing that you said to her, in her dream. FUCK. We both figured out when it is that I hide the most. It’s when I’m angry. It’s because to me, anger is shameful. It makes me feel dirty, like I need to take a shower and scrub, scrub, scrub. I’ve never been an angry person. I don’t know how to handle it. I’m pretty sure I have done/said hurtful things while being angry. I don’t want to hurt anyone so when I am feeling super angry, I hide. If I hide, I cannot hurt anyone with the stupid/mean things that may come flying out of my mouth. I’d rather just deal with my anger and take it out on myself, like on a mountain where I can beat myself up. Where I can find moments of quiet. Where I can scream, cry, bloody my knuckles and nobody has to see me. This is what I am doing, every single day until May 2nd. Plus, Dr. JoRo is freaking leaving me for 2 weeks! Um excuse me! If I don’t do this/and she is gone I am going to go bat shit crazy!

So, this is what I’m doing. I have no doubt that I will be up that mountain for hours upon hours for the next 30 days. I don’t know what I am looking for. All I know at this point is I kind of want to die but I also want to kind of stay alive. I’m just leaving it in the hands of the fates at this point. The exercise feels good to me. The not listening to music, feels good to me. The just being with my grief/sadness hurts like hell but it’s not going anywhere. I’m going to go and join it and truly join it, alone. I’m not filling my days with things/lunches/nail parties/all things I need to take a break from. I’m going to fill my days with silence/dirt/nature/barefoot hiking/blisters/cut feet/sunburns/isolation and solitude.

This is my plan. It’s not much but this is what my heart is telling me I need to do if I want to survive this next month that is coming up. Power through April and maybe it will help you to figure out May.

I’m sleepy, Ro. You would be so proud of your brothers tonight and their baseball game. They looked so great and happy. We all miss you so much. Tonight Quinn got blamed for doing something by your daddy that he says he didn’t do. I looked at him and said, “Just blame it on Ronan.” He giggled. We both yelled out, “Ronan did it!” That made us laugh even harder. And then we got sad because you weren’t here to do it, so we snuggled up together and I just held him and we quietly talked about you.

Your Sparkly said it best. Nobody deserves this. But especially not you. Especially not me. Especially not us. I told him it was you I am saddest for. You deserved so much better. You deserved so much more. You were robbed of living the most beautiful life. I am the saddest for you, always. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

Inferno Hiking. Safer than Meds.

Ronan. I cannot shake this funk. I have a few ideas as to why.

1) The maybe baby thing. I am honestly o.k. with it. Somebody asked me if we were going to try again. Well, we didn’t really try the first time and I don’t foresee us trying in the future. I will not be watching the calendar for when I ovulate. I can’t do it. It’s too much pressure. If this happens, I just want it to happen. I can’t handle the stress/worry/waiting/wondering/emotions that come along with the whole trying for a baby. I trust in you. If this is what is meant to happen, you will see to it that it does.

2) Fucking Easter is coming up. Fuck! Enough with these holidays! I think we all decided last year, in Coronado to ban Easter. If my memory serves me correctly, which it often does not anymore, we decide to ban Easter and celebrate “Feaster!” instead. I have no idea what this means but I am feeling the pressure to come up with a plan and come up with a plan, fast. For the sake of your brothers. I think we talked about how we will worship a chocolate easter bunny for the day. There will be no pastel clothing. No fancy clothes. No Jesus at all. Not that there ever was, so it won’t be that different, in that regard. I know the root of why I am having such an issue with this “holiday of pretend.” It is because it was the last holiday that you were here. I remember exactly what we were doing/where we were last year. I remember how I still not did think that you were going to die. I think everyone around us did, but of course, everyone hoped for a different outcome. I remember how happy you were but now I know you were in such extreme pain. You had to have been although your smile would have said otherwise.

3) I’m still fucking bloody exhausted. I think my body is having an allergic physical reaction to you being gone. Is that possible? I think that it is. I think that I am having it. I am trying my hardest to push my way through this. I don’t have a choice.

4) This whole 1 year thing is harder than I thought it was going to be. It’s distracting me from everything that I am trying to do/get done. Every single fiber in my body is missing you to the extreme. I can usually control my sadness, Ro. I can usually feel it, deal with it, embrace it, and it sometimes it does not feel so heavy. This has not been the case for the past week. This sadness that I am feeling, is so heavy that I feel like every step/breathe I take, is weighed down by 100 elephants. Everything that normally works for me, is not working at all. I am borderline scared.

Today, I was productive or as productive as I could be. I did some foundation things. I had a little lunch with two of the loveliest souls. I felt lucky to have them helping me. So lucky, Ronan. I am still amazed how due to your story, the most amazing people have trickled into my life, wanting to help and be a part of this change. I am very blessed in that regard. I came home after lunch and I swear to you, my bed was a magnetic force field that I could not fight. I crawled in it. I crawled into it and I felt like I was going to drown in tears/sadness and pain. I had to tell myself I could have 20 minutes of laying down. After 20 minutes, I yelled at myself in my head. Get up now. You cannot do this. You cannot stay in bed for the rest of the day. I made myself get up, out of bed, and back to our little mountain I went. I ran up it as fast as I could. I made myself almost throw up. I ran down it even faster so I would not be late to pick up your brothers from school. It was hot and the mountain was empty once again. Just the way I like it.

I picked up your brothers and we went to Rita’s Italian Ice place with some friends for an impromptu play date. I love things like that and I love the friends we went with. Your brothers giggles and smiles almost helped with my sadness. I ran into a mom I know. A mom that I don’t know all that well, but I always love seeing her. She has the kindest eyes and has a way about making me feel like even though she has no idea how I feel/what I am going through, she kind of does. I guess it’s because I can see the way she loves her twin boys so much. The same way that I love you and your brothers and I can tell she is a really good mom. I appreciate that so much.

I came home, helped your brothers with their homework, cooked dinner and that was all I could do. I slipped into bed, early. Not really sleeping, but tossing and turning. My sleep is all out of whack again. Go figure. Tomorrow, I have a day planned with Dr. JoRo. I obviously need it badly. I am hoping it will help with whatever is going on. I cannot take much more of this tiredness/fog/fatigue that I cannot get out of. WTF. It’s getting old.

That’s all for tonight, little one. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams.

xoxo

Dear Asshat Fuckwad Idiot…

Dear Asshat Fuckwad who told me that they came back here, to read this blog, hoping that I had found peace. Who told me to go read, “Heaven is for Real.” Who told me to listen to the radio station, KLOVE to find comfort. FUCK OFF. Are you even fucking serious? Because if you are, I would quite possibly like to shove that book and that radio station, up your ass.

I did not cremate my dog. I did not cremate my grandmother. I cremated my son. I watched for 9 months as my beautiful boy, fought with everything he had for his life. I watched him take his last breaths. I watched as he was put on a table and taken away. I will NEVER come to peace with that. And for you, to sit back and tell me that I should… you are fucking sick. You are not a good human being. Do not tell me what do to/how to do this. Do not compare me to other mothers. I don’t give a flying FUCK, if heaven is for real. That does not diminish my pain, my missing him, and us having to be apart.

NEWSFLASH:::::: THERE WILL NEVER BE A DAY THAT I DO NOT MISS HIM. THERE WILL NEVER BE A DAY THAT I DO NOT HURT. THERE WILL NEVER BE A DAY THAT I WILL COME TO PEACE WITH THIS. THERE WILL NEVER BE ANY WORDS THAT CAN MAKE THIS PAIN ANY LESS. THERE WILL NEVER BE A DAY THAT I AM NOT SAD, ANGRY, HURT, or broken. THIS IS WHO I AM NOW. But I am also learning that I can have moments where I truly feel happy. I am also learning that I have the ability to feel love so much more deeply now. How watching my twins at a baseball game, have a great play, can make me feel so happy that I feel like I am floating on air. Every kiss from them, every victory, ever hit of a baseball, every basketball shot they make, every spelling test they ace, every smile they smile… brings me so much more joy then I have ever known in my life. Every I love you, means so much more now. And it is all due to his death. I am not o.k. with that, but I know this is just how this is, so I embrace all of the intense feelings that I now feel more often then I used to. Everything in life means so much more now. Even on the days I don’t want it to.

And yes, you closed minded but God Bless YOU, little thinker… It may be offensive to some that I would have traded my husbands life for Ronan’s. Obviously, I would have traded my life first… then Woody’s. If there would have been a choice, this is how it would have went. How the fuck is this offensive? It goes back to our basic animal instinct. Do you find it offensive, that a mother tiger would do anything to protect and save her cubs in the wild?? Even if that means fighting with her mate, killing him, in order to save her babies? I doubt it. Because that’s the nature of survival in the wild. We are not that much different from the wild animals in nature when it comes to our babies. I would go so far as to say, most mama’s out there, would save their kids, before their mates if given the choice. Some people may be too scared to admit this as it sounds so wrong and fucked up. I really don’t care how it sounds because for me, it’s the truth. Woody would tell you the same thing. I know he would have chosen Ronan’s life over mine and I would have happily given it up. I would think there was something wrong with him, if he would have not traded Ronan’s life, for mine. But we don’t get that choice, so we will stay here, and be HONEST with each other about how much we miss him/love him. If that offends you… once again, you can fuck off.

I am proud of myself. I can see the way I have grown from this. I look back at where I was last summer, and that scares the shit out of me. If I were still in that state of mind/not functioning/angry/sad…. I quite simply, would not be here. I pulled myself out of the darkest place I have ever been in my life and I did it with the strength and love that comes from Ronan. I did it for myself, for my family, for my friends, and for all the people out there who believe in me. I am a fighter. I will fight for the rest of my life for everything I have, but also for everything that was taken away. I will never stop fighting for good. I may have a day or even a week here or there, where I take a break from it all and just let myself feel and give into this pain. This is my process, my way, and nobody else has the right to tell me what I am doing or how I am doing this, is wrong.

DO NOT CONTINUE TO COME BACK HERE, TO CHECK ON ME, AND THEN LEAVE YOUR NASTY COMMENTS. YOU DO NOT CARE ABOUT ME, SO GO TAKE CARE OF THE OTHERS IN YOUR LIFE THAT YOU DO CARE ABOUT. I have the BEST people in the world surrounding me. I have no need for stupid idiots that tell me to find comfort in a fucking radio station or a book. The things I will find comfort in are the things in my everyday life. Real, tangible things like my twins, husband, and friends. In Ronan’s Foundation. In helping others. In trying to live this so very wrong life in a way that would make him proud, would make him smile, in the way that I am living it, not the way others want me to live it. That is such fucking bullshit. I am not here to be a sweet pea little angel who is peaceful and content with my son’s death. It was wrong. It is wrong that this is happening to so many babies/children/teenagers, yet people are more concerned that somebody threw flour on Kim Kardashian while she was walking the red carpet. It is offensive to me that shit like that is splattered all over the newspapers/on the television/in magazines. There are REAL problems in the world and until that world wakes up, I will not stop fighting, kicking and screaming for all that has been taken away from me and my family. And for all that is being taken away from all the other broken-hearted parents/friends/siblings/grandparents in the world.

I’ve said it before and I’ll say it again. Go back to your world of unicorns, rainbows and puppy dogs. Stop coming back here, hoping I have found peace and then being disappointed that I have not. If other parents, have found peace when it comes to losing a child, good for them. I will never be one of them. I have no doubt, that I will find something. But peace will NEVER be the word I will use. The only way I will be using this word is when I say, Peace out to you, A-hole.

I would also like to include a post from my Dr. JoRo that is on her blog http://drjoanne.blogspot.com/ Read it and weap. And then feel like the dumbass that you are.

Thursday, March 22, 2012

Bereavement and Snorting Seaweed

When I broke the silence, posting my first public statement with regards to the DSM 5’s controversial plans for the bereavement exclusion, I had no idea the breadth and depth of its reach. Publicly, almost 100 comments on a registered site. Privately, hundreds and hundreds of emails came from the bereaved and the traumatized telling their painfully intimate stories. Thank you all so much for your courage. I’m so sorry I haven’t yet responded to each of you. I will, I promise.

Because I believe in Dr. Brene Brown’s research on vulnerability and shame, I’ve decided to give form to my own story as a bereaved mother in 1994.

First, let me set the stage. I had no history of mental illness, depression, or family suicidality. In fact, I had never been depressed a single day in my life.

Chey died in July of 1994. Let’s just say I was truly struggling in the early weeks and months and even years after her death.

Let me tell you about the first few weeks. I was absolutely numb. In fact, if someone told me that standing on my head or snorting seaweed would help ease the suffering, I may well have followed their instructions. It was, in my best description, a zombie-like state, where I was utterly unable to think clearly and relied on others’ wisdom to get me through the intolerably quiet nights and the unbearably chaotic days. I couldn’t remember to brush my teeth or comb my hair. I felt out-of-body, often like I was floating. I was convinced I was in a horrific dream state. I wasabsolutely more vulnerable to the influence of others than I’d ever been. This, to me, is symptomatic of acute trauma, and this state lasted until mid-September.

By the end of September, when the emotional anesthesia had run its course and my pain became increasingly apparent in affect and behavior, everyone was concerned. And no one knew what to do with me. Many of the traumatic grief markers that are often confused for “depression” were a part of my daily existence: insomnia, significant weight loss stemming from compromised appetite, anhedonia, intrusive thoughts, nightmares, heaviness in my chest, difficult concentrating, feelings of panic and dread, longing and pining for my dead child, forgetfulness, envy, long periods of weeping, social isolation, persistent feelings of guilt and shame, and yes even thoughts of ending my own life. My concerned family sent me to my first psychologist. After about 30 minutes together, he said I was “clinically depressed” and suggested psychotropic medications. Yet, I had a tingling sense that he didn’t understand me, that he hadn’t connected with me. I felt his quizzically judging gaze as I told him that I did not want psychiatric medication. I insisted that I was not depressed. I recognized this darkness as grief. I felt that her life and her death were worthy of my emotional and behavioral experiences, and the intolerance of those around me was baffling. This was not the answer for me. This was not my truth. Somewhere, deep inside me, I knew.

Still, he pressed me. And still, I resisted.

I walked out of his office hurting more when I left than when I entered.

That encounter was a dangerous one for me, resulting in some unexpected outcomes which added to my grief burden.

It took months for me to realize that her death was my burden to carry, not anyone else’s, and I would need to do it my way. And carry it I did. Clumsily, awkwardly, fearfully, mournfully, indeed. But I carried it. Still, at the enduring behest of family members, there were other therapists I saw after him, and while not all labeled me as “depressed”, I never felt that deep human connection. I would be the one-hit-wonder of therapy patients.

I did eventually meet two bereaved moms through a local support group, Compassionate Friends, who would just sit and listen to me. That was, by far, more therapeutic than any of the professionals I had seen to that point. Mostly, I just needed someone to bear witness to my pain. Then, I began to allow the ‘doing’ to come from the ‘being.’ I started theKindness Project wherein I began committing random acts of kindnesses for strangers anonymously. My heart was turning outward toward others, and I began to see the suffering of the entire world through my own broken heart. Because the pain is so imbued with self-focus, perhaps a defensive type of narcissism, serving others provided an imperative toward a new paradigm. Slowly, the darkness lifted and I began to rejoin the world of the living. And slowly, my family began to understand that this was an unending process I needed to experience.

The next year, I received a phone call at home. A quavering voice on the other end of the phone turned out to be the first psychologist I’d seen.

He told me that he wanted to apologize to me, and that he was sorry for the way he’d treated me. Then, he told me the real reason for his call: his daughter died.

I went to his office that night and we talked. It was a very important turning point for me, a moment of perspicuity for us both. He now knew. He was an insider. No, he agreed, I had not been depressed. He understood what this was, and his entire worldview had been irreparably altered.

Now, I realize that this is my story. Not everyone’s. Only mine. What I did not realize was that I was the expert in my grief. (Check this amazing story about patients as experts!)

But I’ve seen, literally, countless bereaved parents through the years and I’ve heard their stories of interactions with others. We have six counselors trained in mindfulness based interventions in our Phoenix offices, and they’ve heard the stories. In fact, we get the painful privilege of seeing them from the early moments of death to years, sometimes decades, later. To assert that mindful, existential psychotherapy is commonplace amongst providers of psychiatric care might be- well- a stretch. Good bereavement care and competent interventions are a necessary social offering. However, time and time again, research demonstrates that thequality of the relationship between provider and client/patient is what makes the difference in outcomes.

Trained providers who are mindful (and especially those who practice mindfulness), humble, and present are a gift. Irvin Yalom calls this “thegift of therapy.” Truly, good therapy can be life-altering. Conversely, inadequate therapy with an unskilled, unmindful provider can exacerbate feelings of aloneness and emotional angst.

But, when a child dies, even “good therapy” doesn’t cure or fix. Good therapy is merely joining the sufferer in their pain, non judgmentally with full acceptance and compassion.

Some of my colleagues disagree with my position on the bereavement exclusion and I’m okay with that. Philosophical inquiry leaves plenty of room for discourse. But there are some misnomers: Some assert that achemical imbalance in the brain causes depression so the two are not mutually exclusive. I agree that they are not mutually exclusive however to date, I have not seen, as Dr. Paula Caplan says, “a shred of evidence” supporting the chemical imbalance theory. I also disagree with colleagues who assert that we should, as a profession, acquiesce to systemic “labeling” merely because mourners can get help (need I remind readers that the DSM III “labeled” homosexuality as a mental disorder?). If the only way people can get help is to “label” them, then the system is woefully broken and we’d better get busy repairing it not further harming the vulnerable. Finally, in our single minded quest for biological determinants, we must remember that psychiatry is not an absolute science. Unlike diabetes or other biological diseases, there is no objective blood test that can definitively diagnose grief or depression. Rather, it’s a field of value judgments and clinical prudence (or imprudence). And let’s not forget that psychopharmacology as an isolated ‘treatment’ is gaining and psychotherapy is not; rather psychotherapy is “assuming a less prominent role”(Olfson & Marcus, 2010). I’ll write more about this on another day as I do have an opinion on trauma focused practice.

For now, what I can say is that, for me, those nights on the closet floor curled up in a ball and those many days of skipped meals and the added burden of existential loneliness might have been more manageable had someone just been present and mindful with me.

And like the relativity, they can keep the label. Endogenous sadness is certainly nothing for which to be ashamed. But assigning that label to me was inappropriate, premature, and yes offensive. Let me restate something I said earlier in this article: I am not depressed now, nor was I ever. And almost 18 years later, I continue to grieve and mourn for my child because my love for her will never end. And that is, as they say, the price we pay for love. And yes, for that, I’d snort seaweed.

Apple pies and middle fingers

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.

I am inspiring? I am inspiring. She is inspiring. That little Dragon of hers is inspiring. This really good world around me, is inspiring. Your fairy RoMo is inspiring. You are inspiring. You are inspiring, these really, really good people who are going to make such a difference in this world. You know who else is really inspiring? That Taylor Swift friend of yours. TAYLOR!!!! I have been meaning to write you a little letter. I have not forgotten about you and the kindness of your heart. I have not forgotten about that night at your concert when you looked me in the eyes, tears pouring down your face, and told me how sorry you were about Ronan. You didn’t even care that you were messing up your make-up. I have a confession to make, Miss T. I had my reservations about you. Because sometimes I can be a skeptic and sometimes the world of celebs seems so jaded and misguided. I kind of thought you might be too good to be true. I am happy to say that I was wrong and I am so glad about that. I heard what you are doing for Kevin. I hear about these things you are doing for these brave kids. I secretly think it all started because of Ro. Not your good heart as that has always been in you. But the kindness you are showing for these kids who deserve it most in this world. How I so wished Ronan would have had the chance to meet you. But I know he is guiding you in the way he is guiding me. I know you won’t ever forget the most beautiful little boy, as you called him. He is hard to forget, even for someone like you. Thank you for not forgetting him. It means the world to me. I will continue to watch you, love you and be inspired by someone like you. I am so proud of you.
Alright little Ro. I’ve gotta go. I’m so sleepy. I love you. I miss you. I promise to continue to do good things, for you. I hope you are safe. I am so sorry you are not here.
xoxo
P.S. Hellllloooo lovies! Just wanted to let you know that there is the most AWESOME page on Facebook that I think you should all like. It’s called F U cancer and I have no idea who created it;) but it is that awesome, so I think you should check it out and spread the word. It’s funny. It’s witty. It’s inspiring. It’s totally offensive to the people who are offended by the FUCK word, so if that’s the case, you should not check it out. But if you are not offended by the fuck word, because you are smart and think cancer is more offensive…. you need to *like* the page. I promise it will keep you giggling. And they are doing some really great things on it. Thank you! Have a lovely night!
Here is the link!
xoxo

In the words of Eddie Vedder…. I’m still alive. But do I deserve to be? Is that the question? If so, who answers…. who answers??

 

 

Ronan. I feel like I have run a marathon. I am emotionally beat, but my mind refuses to be still. I need you here. I need to tuck you in, to kiss you goodnight, to tell you I love you and to hear you tell me you love me back. I miss you so much that sometimes I think this pain might really kill me. I’m not that lucky because it never does. I just continue to feel like I am being stabbed over and over again. It is an endless, vicious cycle of pain and misery. It hurts to even breathe. But I’ve been productive. I spent the weekend, throwing myself into work for your foundation. I have so many ideas. I have come up with a new dream and vision. It’s HUGE. I think it’s slowly been in the back of my mind but it just become clear to me a few days ago, what it is that I think needs to be done. Not very many people know about it. I’ve only told a few as I think I need to keep this one to myself for a while, until I can get a handle on how this plan of mine, can actually become a reality. It could change so many things. It could help so many people. It’s just one of my dreams for this disease, just one of my many ideas. I’ve obsessed over it for days now. But it’s like slowly putting a puzzle into place. The pieces have to fit just right and it is not something that can be rushed. It has to be done just right, so eventually all the pieces will fit into place. It’s time to start working on the pieces baby. One by one.

So, I may be out of control with our little Taco place. I spent 3 days in a row there. 1 lunch, 1 dinner, and one very productive foundation work day. Turns out, you can hijack the wi-fi from the big restaurant across the street. SCORE for Team Ronan! I’m going to have to start up a Taco/Mexican Coke fund. I spent last night there with your fairy RoMo and Margarita. It was kind of a last-minute thing from your RoMo as she was like, “Hey, I’m thinking of changing my flight to stay an extra day!” My response was please do so, that way we can go and have more chips and salsa. So we did and I hijacked Margarita to come along with me. BEST NIGHT EVER. Is it bad, that my best nights ever now revolve around everything you?? Because to me, it means the world to me the way I get to sit around and throw out these ideas to people who care so much that they will give up their Saturday night to figure out what it is that we need to do to make these really, really great things happen?? Do you know what I was told last night?? That the word no, was not acceptable. That there is always a way to work around things to make things happen. I LOVE that. I need less no’s and more let’s find a way to fucking do this! Because so much needs to be done in a big way for pediatric cancer, to change things. Last night was so inspiring, so powerful, so moving. At one point, your RoMo just looked at me and goes, “I can’t explain this, Maya, because there is no explaining it. Ronan is changing everything. There is a shift and a movement happening. No other “sick,” child has had an effect on people like this.” I just quietly listened and told her I knew. We all know that this is beyond something bigger than us. I know that this is all due to you, your beauty our love, and your wild and free ways. It is too beautiful to try to explain with words. Let’s explain them with the huge things we are going to do in this world instead. We’ve got a pretty kick ass list of names that we are going to try to recruit to help us. It’s time for this world of ignoring childhood cancer, to change. Enough is enough. You should not have died. Let’s try to help other little one’s so that one day, they won’t have to either. I don’t think that’s too big of a job, do you? I know you don’t, otherwise you would not be pushing me forward to do this.

Today, I went back to our little Taco Shop with my imaginary board member that does not exist. We sat, went over the huge to do list. She gave up her Sunday, for me, for you, for us. What do I even say to that? Nothing. Because she does not want the huge fuss made about her, that I want to make. She just wants to be behind the scenes, helping us out in her quiet Wizard of Oz way. She is the freaking Wizard of Oz in a way that leaves me speechless. Speechless but tearful and thankful. Thanks, you know who you freaking are. Thanks for everything but most of all for looking at me today and going, “We can do this. This is easy.” Thanks for believing in me and Ro. Thanks for being just a kind-hearted, secret badass chick in general. You are quite simply, are RoMazing:) Oh, and little LoRo…. my other little amazing dolly who has worked so hard on the RoLove that she is creating….. I need to tell you thank you tonight. For not being a normal, 17-year-old girl. For being different in such a way that you have set the bar so high, for other girls your age. Your heart and the love that you have for Ronan and all these other cancer babes, is so beautiful and you are such a gem. Thank you for all of your hard work and love. I’m so thankful for you.

Alright, my spicy little monkey. It’s kind of late. My eyes are burning and I think I have to try to sleep. Not just for a few hours. Please. I just want some normal sleep. Not sleep which now seems to come in the form of fall asleep for a couple of hours and wake up to Ronan is dead. Ronan is gone. Nothing in the world is right so screaming voices take over in my head, instead. I’m sleeping in your bed tonight. Maybe this will help. It seemed to be working for a while. I hope it will work, tonight. I love you. I’m sorry. I miss you so much. I hope you are safe. G’night baby doll.

You and Ben. Ben and You.

Ronan. I have had so much go on the past couple of days but all I can think about is Ben died today. Those are the words that jolted me out of my Ambien induced coma last night at 12:11 a.m. I was asleep, in Quinn’s bed and you know once I take my Ambien, World War II could be going on in our house and I wouldn’t know it. Last night, I was ripped from my sleep and straight up in my bed, not knowing why. I reached for my phone because something just felt not right. That’s when I read the words, “Ben died today.” My stomach dropped. I immediately sent your Mr. Sparkly Eyes a text that simply said, Ben died. Fuck. Fuc (which is our code word for Fuck You Cancer) I got up, I kind of remember going into our bedroom and just saying out loud to your Daddy, “Ben died. FUCK!” I don’t remember what happened next except my face was very wet. I woke up in the morning, back in Quinn’s bed praying that I had only dreamed of Ben dying. I grabbed my phone and read the words, once again. No. No. No. No. Not Ben. I got up, showered, got your brothers up as we were running late. I was in the middle of making lunches. Your brothers came out to grab some breakfast. Your Quinny was complaining about the shorts your daddy had picked out for him to wear to school. They were just normal, corduroy shorts and I told him how handsome he looked. He started to say how he didn’t want to wear them, how it wasn’t fair. I stopped in the middle of making his sandwich, looked at him and I said, “Ben died. Ben died and you are going to complain about the shorts you are wearing? You are not allowed to do that.” Was this too harsh for an 8-year-old? I don’t fucking think so. It’s real life. It’s real life where I’m sorry but we don’t get to complain about things that don’t fucking matter anymore. There are bigger problems in life. I refuse to let your brothers, forget that. I refuse to let them grow up in a world where they are ungrateful that they are alive and get to wear stupid shorts that look nice when all they want to do is wear Nike Basketball shorts. It’s not happening when you and Ben would have given anything to wear nice corduroy shorts.

So Ro. I knew that day I saw Ben at America’s Taco Shop that it was really you that I was seeing. It was not just a coincidence. It was a very well orchestrated plan thought out by you. I knew that day, that Ben probably was not going to be around much longer. I knew that this was your way of telling me this, but it was also your way of telling me that you were going to take care of him. I knew this then, but I know this now for a fact. I have not told his mama this. I talked to her today. I wanted to tell her this, but I could not find the words. I was the one, crying on the end of the phone while I listened to her tell me that she was fine. How she was cleaning the house, but she was fine. What do you say to that? I did the only thing I know how to do. I simply said, “Barb. You are not fine. You are in shock. You are having a physical reaction to Ben being gone and your mind and your body are trying to protect you.” She said she wasn’t sure, that she really felt fine. The tears slid down my cheeks. “O.k.,” I said. “Please just know that I am here when the shock wears off. I’m much further down this road, so I kind of get it. Not entirely, but kind of.” All I wanted to do was reach through the phone and wrap my arms around her. All I wanted to do was to bring Ben back so she wouldn’t have to be fine. I felt so useless and so helpless. I tried to think back to what happened right after I lost you. I don’t remember much but I think I wrote to you. I’m sure there were so many people out there going, “Has she LOST her mind?!! Who writes a blog post, not even 24 hours after their child dies?!!!” I guess that was my version of being fine. Everybody deals with things differently. There is no right answer. You know what else, makes me love Ben’s mom even more? The fact that when she did do her update (I’m assuming it was her) that she simply titled it, “Ben died yesterday.” That was very Maya like if I do say so myself. Regardless if they are religious or not, it was so fucking refreshing not to read, “HALLELUJAH! Ben is with our Lord Jesus Christ! We are so happy!” The next caring bridge that I have to read, that says something like that, I’m going to punch my fucking computer screen. I don’t care how much you believe in God…. stop fucking lying. No parent is happy and rejoicing that their child is dead. Let’s call a spade and fucking spade. I don’t care if God is your fucking BFF. The fact of the matter is your child is gone and let’s just be honest for .2 seconds and be honest about it like Ben’s mom. Ben died. That says enough. That says everything and more. It is enough. Just let it be enough and nobody needs to scream Hallelujah about it.

I know I worry about you being safe, Ronan. But I don’t worry about Ben, because I know he is with you. Does that make sense? I may not know that you are safe, but I know you are now watching after your little buddy and I know that you two are together and so I know you have a little friend to pal around with. I pictured you two, today playing with each other and running all around. I actually pictured you both on this earth and how you would have been great friends. You don’t get to be here together so you being somewhere else, will have to do. It was easy for me to picture the two of you, together which is weird because we didn’t even know Ben that well. We only had a few interactions with him but they were always one’s that I could not forget. I never could get his little mischievous smile, out of my mind. It was so much like yours.

Words failed me today with Ben’s mom. There are no words that could ever be good enough. I’m so sorry was all I could really do. If I had to tell her some things, it would be this.

This should not have happened. It should not have and you don’t ever have to be o.k. with this. You won’t ever, “get better,” or get over this. And you should not. He was your Ben. Your one and only sweet Ben and this just proves that life is not fucking fair. Nobody will ever have a Ben like yours. This is o.k. You are the only one that was special enough to have him. People will try to understand but they won’t. This is o.k. too. He is your best kept little secret. Your love is your best kept little secret. The best kept little secret that nobody can take away from you because it lives closest to your heart and your heart, ONLY. Nobody else’s. Ben knows how much you loved him. Ben knows you would have traded your life for his in an instant but it was not your choice. You will learn to accept this and let his love, guide you for the rest of your life. Don’t question your heart. Ever. With anything you do anymore. Even if that just means deciding what to cook for dinner. Everything will eventually mean so much more than it did before because Ben will be behind everything you do. Not that he wasn’t already before, but now his light will become that much stronger even on your darkest of days when you don’t want to get out of bed. Don’t fight this. Stay in bed and have lots of dark days. He is worth every single tear. He is worth your shattered, broken heart. He will help you put it back together when it is time. There is no time frame for this. Don’t listen when you hear this gets easier as time goes on. Time is irrelevant. Time means nothing. Time has stopped. You were his teacher for an amount of time, that was cut way too short. Let him be your teacher now. I know he has so much he wants to teach you. I know he has so much he is going to teach you. He will keep you safe. I promise. I’m so sorry. I’m so sorry and I wish I could bring him back. I can’t so Ro will watch over him. I don’t believe in much these days, but I believe in this. I don’t just believe in this, I know this. I love you. I love Ben. I love the love you two have for one another. Not had. HAVE. You will always have that. Always.

Alright Ro baby. It’s been a long day full of too many tears and homemade potato latkes. I peeled the fuck out of the potatoes today while I cried for you, me, our family, Ben, and Ben’s family. I made some pretty kick ass potato latkes. You would have loved them. I’m sorry that cancer is an asshole, therefore you couldn’t be here to eat them. I’m sorry. I’m sad. I love you and I hope you are safe. Thanks for taking good care of Ben. I love you both to the moon and back. Sweet dreams, baby doll.

xoxo

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

xoxo

Grief! It’s a tricky mo’ fo!

Ronan. Grief is a tricky thing. It’s one of the thousands of things in life that I will never understand because it is that out of my control. I never know when it is going to be an o.k. day., a really bad day, a paralyzing day, a “crazy,” day. I never know who I am waking up to in the mornings, who I am having breakfast with, who I am showering with, who I am folding laundry with, who I am sleeping with. For somebody that has lived with so much consistency in their life for so long, the living this new life of never knowing is exhausting. But I keep rolling with the punches.

Guess what I feel like today? The really bad mama/wife alter ego. Guess what, Ronan. Today, I don’t want to be a mom or wife at all. Try living with that guilt. I never felt like this before losing you. Now, I feel like this all the time. I want to run away and never look back. I want to be alone with my pain. I don’t want the comfort from your daddy or brothers and I don’t want to comfort them. Does that make me evil and a bad person? Because that’s the way it feels. All I want is to take my pain of losing/missing you and run away and keep it to myself. I want to live in the middle of some dark, dreary forest where it rains all of the time and live in a little house, all alone. Just with you and our memories. I don’t want to see our old friends. I want everyone to go away. But you know how this would end if I actually did this? I would end up killing myself. Sylvia Plath style. Her death was so dramatic, yet it was what she wanted and the way she wanted it. I respect that. I’ve always loved that woman.

I think about death all the time. It doesn’t scare me. It didn’t scare you which in turn means that it is something that I don’t get to be afraid of either. When it’s my time, it’s my time. I know that life is too short to sit around an worry about it. So I don’t. I think about it instead. You know what the 2 things that are guaranteed in life, Ronan? Death and this exact moment. Not 10 minutes from now, not 10 hours from now, 10 days from now, or even 10 years. I’m not going to worry about the fucking future when the future is a lie because it is not guaranteed. I am going to worry about this moment. I am going to put some ideas out there and if they happen, great. But if I die before they do, at least I’ll know I put some things out into this world. At least I’ll know, I tried. I’m going to say the things I fucking want to say, and regret NOTHING. As long as I stay true to you and me…… regrets are not going to happen. I’m DONE. Done worrying about what the others out there, think. The others of the world can fuck off. I don’t care who has a fucking problem with my GOD is an ASSHOLE SHIT. If you are going to judge me for that, then you can FUCK OFF too. There is no God out there…. the good and all mighty powerful God who would do this to parents. Who would do this, to you. So judge me all you want. Keep living in your little bubble and lock your doors, so I don’t turn your kids into Satan loving little devils. If you really think this about me, due to what you read, then you don’t know me at all. You are being judgmental and due to that alone, please stay away. You know the kinds of people that I appreciate so much in this life? The parents. The parents who read this, yet they still invite Liam and Quinn over for play dates and they still let their kids come over for play dates at our house. Even if they do not know me that well… they have taken the time to get to know my children and they see two of the kindest, most gentle souls so they know that no matter what I write….. everything is going to be o.k. They trust me; even though they do not really know me. They are the parents, who know I am in agonizing pain, but who let my children be a reflection of me. This means everything to me. Everything, Ronan. I am a good mom. I am a good person. This is my outlet where I can scream, cuss, and cry because I don’t always get to act this way in the real world. In the real world, I tend to remain calm, cool, and collected. In the real world, I keep it together and for the most part, I am able to act like the “normal,” mama under these hellish circumstances. Hell is real alright but all the devils are here. Tell me I am going to HELL and I will never see my child again. This is HELL. I am living in HELL, right now. I know in my heart, that I will see you again, Ro. I know this and this is the only thing I’m answering to in this life.

Today, I don’t even know what I really did. I think I stayed home which may actually become the death of me. I think I could die from the pain alone of being in our house, without hearing the little pitter patter of your feet and the sound of your squeaky voice, yelling for me…. your giggles. The best giggles in the world. I stayed home and played the domestic good little wife roll that is now like nails on chalkboard, but has to be done. I folded a fuckton of laundry. I licked a lot of envelopes. I got a little last minute text message from my newest/oldest yeah I feel like I’ve known you forever friend, but I’ve never actually spent any time with you that said, “Do you need some help with some things?” I said, “YEAH! Do you fold laundry?!” She said she totally did and within the hour she was in my house where we didn’t actually fold laundry, but we licked envelopes and wrote down lists of shit to get done ideas instead. It was a highly unorganized fly by the seat of your pants afternoon where you don’t know what do expect but that’s always how the BEST things, come about. We have lists of a lot of things that have been piling up in my head that I just don’t know what to do with. Things that I am passionate about, getting done. We came up with some new ideas too. We talked about the importance of keeping everything we do in regards to your foundation, true to you. Trust me, Ro. I know how pissed you would be about me throwing an event full of fancy evening gowns and diamonds. Kinda wasn’t your thing. We’ve got some much better ideas in store.

After our productive day of many lists, I picked up this new little friend of mine for dinner. I got to meet her little boy and it was love at first sight. I only got to stay and hang with him for a few minutes but I really wanted to stay and play with him, for hours. I wanted to get lost in his little world and let everything else, slip away. Maybe next time:) Margarita, took me to a really dangerous part of of the hood, for Mexican food. Well, not really but we pretended like it was. It was pretty dangerous having to watch the little blond boy, skip around our table while we were trying to eat. It was pretty dangerous of us to cry over our food and talk about all this “Ronan is in heaven, playing with puppy dogs bullshit.” I’ll say it again, like I always do. I don’t care if this really is the case. The fact of the matter is, you are not with me, like you should be. That in turn, makes everything so wrong. We took our danger crusade to the neighborhood Ross and browsed the aisles of the best infomercial products you could buy, dangerous chemical filled bubble bath, and some of the best ugly dresses I’ve ever seen. Of course we were walking down the aisle full of random nothingness and some little Star Wars action figures were just staring at me. They were all alone, among a bunch of household items. I grabbed them and told, Margarita, I had to buy them for Super Nate. She then goes, “Well they are kind of just sitting there, screaming at you to buy them.” Yes indeed they were. How could I ignore that??? I couldn’t so I took them home with me instead.

I came home to your brothers all curled up on the couch, watching a Pearl Jam documentary on T.V. I snuggled on the couch with Quinn who is still, stuck to me like glue. I mumbled to your daddy that the lead singer of Pearl Jam, Eddie Vedder, was my long lost soul mate in life. He likes to use the word “Fuck,” a lot too and is all about following his heart while breaking the rules. I’ve always been a huge Eddie fan. And the fact that he is such good friends with your favorite, Neil Young is the icing on the cake. I think I need to work on getting those two to do a Rockstar Ronan Rock Concert for you. It’s already on my list, baby boy. I’m going to make it happen. I can see the line up now…….

So, baby boy. Guess what? I have not been taking my Ambien to sleep at night. Guess what I have come to find out. That if I snuggle up in your bed at night, I can actually sleep for hours…. uninterrupted. Last night I dreamed about dolphins all night long. I was in the ocean, holding a baby dolphin and it was so peaceful. No doubt, the baby dolphin was meant to be you. I’ll never forget our summer and how the dolphins would just appear every single time I went out to the beach. I know that was you, letting me know you are around. So last night, I slept in your bed and dreamt of all things peaceful. I cannot remember the last time that has happened. Thank you for that. It’s early and I need to get moving this morning. I miss you. I love you. I hope you are safe.

xoxo

Dear Lovely Little Blog Readers,

I am putting this out into this big, beautiful world that I know exists. If anybody knows of any office space that may be available free of charge…. I so need it. I cannot continue to run this foundation out of my house, alone. It’s too quiet. It’s too sad. And his room, full of his toys is just down the hall from my dining room where I often sit, crying, trying to get things done. Yesterday, my friend came over to help me stuff envelopes and pointed out that me sitting at home, doing these things alone was not healthy. I knew this, but I never thought to ask for anything else because this is just the way it has to be. She quietly told me that I should look around to see if anyone has any empty office space they want to let me use. I would be a really good, quiet tenant. I am really super clean and I smell good, so I have those two things going for me. I don’t really run around screaming obscenities unless provoked so for the most part, I’m a calm collected girl. I have really good references if you need them;) If anybody knows of anything, can you email me at mayawoody@gmail.com. But I don’t want to pay rent. I don’t want any overhead. I would never feel right about taking money out of Ronan’s Foundation, to run things/advertise/etc….. I am not using his money, this way. So if anybody, just has some empty space they know about…. that is just sitting; I’m your girl. I would be SO thankful. I may not end up like Sylvia Plath; with my head in the oven.

Thanks lovies. Oh yeah. Space needs to be in AZ:) I mean Transylvania would be awesome… but the Phoenix area is more realistic.

9 months. I’m so sorry.

 

 

 

Ro baby. I started this last night. I am so tired that I don’t know that I’ll be able to say much more. Seems like not many words are needed tonight. I can’t believe it’s been 9 months. It feels like 9 years. I’m so sorry. I miss you so much.

 

 

Ronan. Bloody fucking fucking fuck. Guess what? This time, 9 months ago I was curled up to you as you were getting ready to take your last breath. How is that even possible? I will never understand this. There will never be a good enough reason for this. I don’t care how much Robeauty comes from this story, Ro. It will never be enough to make up for the fact that you are not here. To make up for the fact that we are not together. My soul screams for you every second of the day. I hear yours screaming for mine as well. I hear the screaming and there is nothing I can do to silence it. I know the screaming will never stop until we are together again. I am learning that I am going to have to live with this screaming, for the rest of my life

What the fuckery happened today? A lot. This week has kicked my ass. I went back for the last day of the TGen conference. I sat in and listened. I scanned the room at all the faces that had become familiar to me from the week. Some of them looked sparkly. Some of them looked empty and vacant. I looked down at my agenda from the week of the key speakers. I had put stars by the people who stood out to me the most. You never know when that little star in front of a person’s name, will come in handy. The one’s that felt to me like they were there for more than just science. I missed you a lot today. I sent your Mr. Sparkly Eyes a text in the midst of my frustration and told him about my plan to hijack the podium. He told me to do it. That the room could use the dose of reality. As always, he was so right. By the time lunch came around, I was so burnt out. I had myself convinced that I taken on too much during the week and that I could skip out of the conference, early. I listened as the 2 little voices in my head, fought back and fourth. One told me to go. That I had gotten everything out of the 3 day conference that I needed to. The other voice, which was very quiet told me to stay. To finish out the day even though I felt so mentally and emotionally beaten. I stayed. And I now know the reason why.

As I was sitting at lunch, talking to someone from TGen a man came and knelt down in between us. I didn’t have a clue to who he was and I was sure he was there to pick the brain of Terry, whom I was sitting next to. He just looked at us and said so sorry but he needed to interrupt. He said, “Maya, I saw you and just had to come over. I’m Max’s dad. I’m so sorry about Ronan.” ┬áMy jaw dropped. “Oh my goodness. You’re Max’s dad. From Max’s Ring of Fire. You are going to make me start to bawl.” He said he didn’t want to do that and we chatted for a few minutes before he excused himself so I could finish my talk with Terry. After lunch, I hijacked Max’s dad and took him over to where I was sitting, so he could sit next to me. I don’t follow a lot of Neuroblastoma stories, but Max’s is one that has always stood out to me and I have followed mainly because he reminds me a lot of you. It was apparent to me, in that moment, that there was a very big reason as to why I did not leave that conference early today. It was because of you and Max. You must have been working together, very hard today. Or playing very hard, I should say:) I exchanged info with Max’s dad. I have no doubt I will be seeing him again soon. I look forward to exchanging many MaxRo stories with him. He made my entire day today.

After the conference I had time to come home and see your brothers for about .2 seconds before they rushed off to basketball practice. I then had to turn around and get ready for a dinner. A dinner that I am keeping quiet about, for now. It was a 4 hour dinner where I feel like big things are going to start to happen but I don’t want to say too much yet as I don’t want to jinx anything. Let’s just say we all have big dreams for this lovely state of AZ. We all feel like we can make big things happen in the Neuroblastoma world, together. A small army is being formed, for very personal reasons. It’s time for a very big change. I have no doubt that big things have the potential of happening with the vision and minds of the people that sat in on our dinner tonight. It felt like we were all sitting around playing a real life game of chess. Everything has to be thought out, strategically planned, and moved when the time is right. The time is almost right….. it’s just a matter of getting all the pieces into place.

I LOVE YOU TO THE MOON AND BACK. I’M SO SORRY. I MISS YOU SO MUCH. I HOPE YOU ARE SAFE. G’night baby doll.

xoxo

Vegas on crack

;

Ronan. Is the picture above, sad? Because I wept just seeing it. It tells the story of everything that is wrong in this life, because you are gone. It tells the story of everything that should be, but is not. At least to me it does. Is everything sad? Because I can’t seem to stop crying. Is this because I spent much of my time in New York, not crying? I went days there, without crying. Now back here, I cannot seem to stop. I took my Ambien to go to sleep last night. Fucking Fuck. I just wanted to 6 solid hours of sleep without tossing and turning. Is that too much to ask? I woke up today, feeling rested. I thought it was going to be an o.k. day. I was wrong. I spent the morning being productive, trying to get some thank you cards addressed. It seems like I am drowning in them. I have to get them sent out. I hope there are not people out there, who think I am not thankful for all they have done, big and small. Nothing goes unnoticed. As I was addressing the envelopes, I thought to myself…. I really don’t recognize any of these names. Who are all of these selfless people, who love you so much that they wanted to help us in our darkest hours? Strangers? Long lost friends? Acquaintances? Is does not matter because they are all united by you so that makes me love them all, even if I may not know their faces. I feel like I know their hearts and they are beautiful.

I’m not sure what happened the rest of the day except I didn’t leave the house. I could easily become a hermit and I have decided I have developed Agoraphobia. Well, at least that is the way I felt today. I felt afraid of the world but hey…. that’s not right because I’m not supposed to be scared of anything. Today, I felt scared. Today, it seemed too bright outside to venture anywhere at all. So I didn’t. Do you know what the outside world looks like to me on most days? Las Vegas, on crack. Everything is so bright, that it hurts. Everything looks so fake and plastic. Everything feels like an illusion and a dream. Maybe I should move to Alaska where the sun doesn’t shine so much. I have a feeling my zombie self would do just fine there. I didn’t pick up the phone either, even though it kept ringing and my text messages, kept dinging. I was in the zone of cleaning out my jewelry drawer and I knew what I was going to find even though I wasn’t looking for it. The ziploc baggie that contains your hair. Your beautiful hair that I had saved when we shaved your head. I opened the baggie, felt your soft hair, and wept. In the middle of my crying, my doorbell rang. I threw on my big, chucky sweater and went to answer it. It was Mandy Bee and she was tired of me ignoring the phone and her. And she was worried. I let her in and let her hold me while I sobbed in her arms. I had the ziploc baggie of your hair in my hands. We sat on the couch and she tried to get me to leave with her. I told her I couldn’t go anywhere except for I had to meet your daddy at Dr. Rachels. I told her I needed to try to make myself look less like a zombie for that. She stayed with me as I somehow managed to throw on some mascara and take my hair out of it’s wet mop on top of my head. I totally had good intentions of leaving the house today, early on. I showered in the morning but I just couldn’t seem to manage much more than that.

Mandy Bee picked up your brothers at school for me. She brought them back to our house for a little playdate with her boys. She also insisted that she was taking me to dinner tonight. I told her no. I tried every excuse I could use, to get out of it. She wasn’t taking no for an answer. Your daddy took your brothers to play basketball. I headed out into the dark for a run. Mandy called me halfway through my run to tell me she was on her way to pick me up. That girl is so persistent. I finished my run just in time to hop in the shower before Mandy came to kidnap me. I answered the door and told Mandy I could not go anywhere that sweats/no makeup/ glasses on/wet hair up in a bun/chunky sweater/red eyes were not allowed. I also told her I could not eat because I had been throwing up all day. She totally pretended like she was agreeing to everything I was saying, but we ended up at True Foods anyway were I proceeded to eat a little something for her. I ate. I sat. We talked. I was glad I went out with her for the hour that I did. I needed the little shove that she gave me. I hope tomorrow is better. There has been a lot of screaming voices in my head again and they have not been saying very nice things. They are making me tired, restless, and exhausted. It’s obvious the grief grim reaper/inferno fuckwad Bob is back with a vengeance. I’ve been trying to let myself just be true to what I have felt the past couple of days. I have tried to be respectful of the way I am feeling by not forcing anything else. I am learning that grief comes in waves. It will never be a steady uphill process. I know I can get knocked back down, at anytime and it often feels like I am starting all over at square one. There is no rhyme or reason to this…. it’s just the way this grief thing works; for me at least. Everyone is different. All I can do it be patient and surrender to the way I am feeling, at this moment in time. One foot in front of the other as they say. Or two-steps backwards to go off the beaten path to an unknown destination. Nothing is guaranteed in life; especially not now. All I can do is keep trying to survive, one day at a time.

I love you. I miss you. I hope you are safe. Sweet dreams little man. I love you to the moon and back.

xoxo