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 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.

28 responses to “Dear Asshat Fuckwad Idiot…”

  1. What I found fascinating about what that woman wrote is that I, and I’m sure everyone who follows your story closely, have seen a real change in you. You seem stronger, more determined and your fighting spirit is shining through more and more. The pain is still raw and it’s still there, but between the pain your strength shines through.
    So glad to hear from you again. Keep going, Mama – we are here, we are listening, we are doing and we believe in you and Ro.

  2. To this day, my extended family waits for the old me to return. Like you, I know this will never happen. I wake up each day missing my two exquisite children. I, too, would have traded my life or my husbands or my parents or ?? to have them here, alive. I still wake up, 8 and 5 years after the deaths of my firstborn son and daughter, hoping beyond hope this was just a bad dream. In my dreams, I still beg and bargain with God, wishing this was not my reality.

    My mom and sisters have often pointed to my “depression.” Alas, I know this is not depression. It never was depression. It is grief. It is unbearable pain. It hurts to my core. The way I can best describe it to someone who has not lived it is, “Imagine the very worst pain you have ever felt or imagined you could feel. It is WORSE than that.”

    It is real and IT WILL NEVER GO AWAY.

    There will never be peace or acceptance that my children have died. I ache each and every day for them. I ache for my 3 surviving children who have lost their big sister and brother. I ache for my 4 grandchildren who have lost their mommy and daddy.

    My family is broken and there is no fixing it. We will never have our old life. Each new day, each new experience, each joy, each cause for celebration is a bittersweet reminder of our losses. Holding a baby or watching a show or going on a trip brings me to tears. I no longer run from those tears, I embrace them as a constant reminder that love never ends.

  3. Thats the fiesty (spicey) Maya I was missing……..please don’t let morons get you down…there are way too many of us “lovelies” who believe in you!

  4. You will find your way as you find your way and that’s nobody’s business. We truly are the experts on our own grief. We are. It took me 30 years to finally get that. But it has changed my life. Thanks for the link, I appreciate it. Patrice

  5. I love you. That’s all. XOXO

  6. i love you maya!!!! stay true to who you are and your love for ronan!!! that is all that matters. let the haters hate. hate is ugly, love is EVERYTHING. you should never feel like you ever have to explain the grief and sadness you feel. you’re a beautiful mama with a heart of gold who in spite of having to get through this new life with out her soul mate is trying to help other babies and families and change the face of childhood cancer forever. wow. you’re a badass and i will always be indebted to you for educating me on childhood cancer (a cancer i had no clue about until this blog) and for letting me hear yours’ and ro’s love story!! thank you to the moon and back!!

  7. – You rock.
    – Dr. RoJo rocks.
    – I am so so sorry Ronan died.
    – I love you even though I don’t know you.
    – I cannot speak for other blog readers but I am sure I am not alone in this thought …. We have NO expectations for you and your grief – we are just here, listening to you and your pain, and your strength, and always always sending you thoughts of love.
    – To those people who check in to see “when you are better”, well, they can fuck off

  8. Keep going RoMama. Don’t let the haters tell you how to grieve. We believe in you! I thank you for sharing Rockstar Ro with all of us!!

    Always thinking of you and Ro!!! Always Ro!!!

    I agree, a true mother would give her life or her husbands life for her child… And with that fucancer and fuhaters!!!!


  9. All our love to you entire family.

  10. While that commentor was certainly the biggest asshat in a long time–I am certain I have been one as well, since I know I have wished for you in the past tiny moments of peace and I am sure a catrillion other things that are totally the wrong thing to say. I am not part of the unlucky club and navigating how to support you on this fucked up journey is uncharted ground. What I hope that is clear to you is that even through many mistakes that care and love is coming from strangers all around the world. I don’t think the Asshat you were referring to in this post was sending it in the way this wanna be Mafia member does–but I hope in some way your post has opened her eyes as it has mine. Love to YOU, Woody, Liam, Quinn, Dr. Jo, and all the FU Cancer peeps/mafia out there as well. Now only wishing for you to find exactly what YOU need to find and hoping that you are surrounded by people who truly love YOU, let you be exactly what it is you need to be at every given moment, and fill you with only good stuff. And since I don’t think I have said so today…FUCK fuck fuckity fuck cancer!!!

  11. Happy to read a post from you, Maya…..glad you are doing okay. Loved the article, Dr. JoRo is amazing! Such a keen insight into what matters…
    There are so many of us who support what you do and Ali Barnes is right, there has always been such strength in you but in the last few posts, you do seem stronger and more determined. Much love always to you!

  12. Whoever this nasty little heathen is, he or she can go kick rocks. You are amazing, you are strong, and you are RIGHT. Your grief is yours and yours alone. Live it out however you will. XXXOOO.

  13. I agree whole heartedly with Daniella!! Us Maya’s Mafia members want nothing more than to be there for you and help you fight this fight.

    These morons, these inhuman soul-less creatures do not deserve an ounce of your time, thought or blog space!! Geeeeeeez, why are they even reading your blog………

    I love you even though we have not met in person yet Maya ❤

    Hugs & love

  14. Hi Maya,

    So I whole heartedly agree with Daniella. Us, Maya Mafia members, want nothing more than to be here for you and help you fight this fight!
    These, haters, these inhuman creatures, these soul-less creeps do not deserve an ounce of your time, energy, or blog space. How dare they come here… YOURS and RO’s space and blast-fully judge you?! It seriously makes me irate……
    I love and support you so much even though we have not met in person yet…


  15. I just read of your story on Facebook today. I have read some posts from his blog. All I say is, “ATTA GIRL!” Your spirit is awesome!!!!!!!!!!!!!

    God Speed,
    Nicole 🙂 From: North Carolina

  16. ***from this blog** sorry for the typeo..

  17. The nerve if that person to write such stuffs!!! Yes that is very inconsiderate thoughtless and simply too self-absorbed uncaring attitude. I am glad you fight back for so many. The cure needs to be found SOON. So no parent should ever face this torture. You are an inspiration to so many. Ronan lives in all our lives forever. Ignore such idiots who have misplaced their heart. Love you and take care

  18. […] Dear Asshat Fuckwad Idiot… ( Share the honey.Like this:LikeBe the first to like this post. […]

  19. S I G H!!!!!!!!!!!!!!!!!!, I wonder at the mentality of American’s under the age of 40. How can you all call this person who wishes to find Maya has found some peace a hateful person.? I too wonder if there will ever be a time when Maya can let this all go so she can grow more fulfilled and positive. When I say, “let it go” I do not mean she will forget she had RO and what a horrendous pain it was to lose him. She will always have a hole in her, but as long as she writes this blog she will not be able to fill that hole, because she thinks that is what all of you expect of her. To keep hurting and spouting curse words like a 13 year old acting out for attention. Your words encourge her to feed the hurt so you all will keep coming. It is like watching someone stand on a ledge and honestly, today I really think many people would love to see them jump, because it feeds some sick need in their own lives. Whether you believe in heaven or hell, you should want Maya to be better and better, for her own sake and for that of her twins and Woody. Ro is ok. His spirit is alive and well. This also does not mean that Maya should give up on her quest to help find a cure for cancer in children. She should do that, but all the drama and juvenile cursing and name calling hurts her cause, whether she or her zycophantic followers believe it or not. There is a lot of pain and hurt and unfairness in the world, and it all needs to be addressed and fixed if possible, but the fact is it cannot. We must learn to live as best we can with what we are dealt and to do all we can to change it, but sometimes it just is not enough and you have to realize you have done all you could. I apologize to the person who wished to find Maya better. None of us know what she has been through. Maybe she lost all of her family in a car wreck. Maybe she saw her loved one burned beyond recognition, maybe she had a child who will be forever dependent on others because they have a horrible disease that will not even allow them to breathe without a vent. Blessings2infiniti to all the world, and please do something positive instead of acting like you are in the 7th grade.

    1. Asshat was appropriate. Yes, we would all love nothing more then to see Maya heal and thrive. There are those of us who get it (as much as we can) and those of us who don’t. Those of us who get it don’t come here looking for rainbows and butterflies when it hasn’t even been a year yet. We come here to see that she has gotten up off the sloor, is getting shit done, working for a change in the way that her baby boy guides her. KLove (whatever that is) and books may work for some people, but it doesn’t work for everyone…..and if they’ve been reading this at all there was no reason to think that it would work for her. Wondering about ther mentality of American’s under 40? Pot meet kettle much, that sounded a bit 7th gradish to me. She is not a car accident that we all take time out of our day to point and stare at. We stand in awe of the love story, the determination, the all around bad assness, for as much love as she feels from her readers, and the amount of change that she has already accomplished. We are proud to stand by her, cry with her, fight for and with her because of the realness. We don’t judge because we don’t get to. None of us knows what she is going through but we are here cheering her on as she puts one foot in front of the other. She is a badass motherfucker who does things her way, and we should all be standing and applauding her instead of projecting upon her how we think she should be feeling. This woman and her family, their story has done more for me then I ever though a stranger could. I am preping to take the MCAT because of this story. I want to kick cancer’s ass because of what it has take and will continue to take. Bad things should not happen to the Maya’s of the world because she doesnt deserve it. I will keep reading this as a reminder not only to cherish every moment of every day, but also as a reminder that there is nothing that I can’t do.

  20. Love you RoMama. For that one douche that talks shit, remember you have RoMillion lovies who love you and support you immensely. That’s all. ❤ Ro, Always Ro.

  21. I agree with Alli, there is a definite change in you. This IS your grief. YOUR grief….you can do this your way. You are moving mountains, for Ro and all of the other children fighting for their lives. I don’t understand why someone would try to take that from anyone.

    I believe that Dr.JoRo is so amazing and I’m so thankful she is helping you and so many others.

    You truly amaze me everyday, by just being you, and by being so open about what you are going through. I cannot believe how much I have learned from you, and Ronan. You have truly opened my mind, my heart, and soul.

    Thank you for that.



    Oh, and everytime we see dolphins and seals..and hummingbirds…we think of your blue eyed gorgeous boy! That’s A LOT here in San Diego!

  22. Maya, I am sorry to say so, but I think that some of the things you say to others on here are unproductive to your goals as you have expressed them. You used to take the “agree to disagree” position. Then when someone posted that while they wished you well, they disagreed with your position on abortion, you called them a “judgmental asshole.” Then you unleashed this really vicious name calling tirade against this lady. While you may not believe in God, many people do, and when you do this I wonder whether it alienates people who feel otherwise. While the idea of finding Jesus through a radio station seems silly, she clearly was not trying to be malicious.

    So I wonder whether your cause, and the legacy of Ronan, is well served by these kinds of words. If you are a believer in tolerance, it seems reasonable to exercise some also. I truly don’t think that either of those people had anything other than your best interests at heart, even if you disagree with their positions. So to humiliate them like that does not do justice to you, and the very noble cause you fight for.

    I am giving you my objective observations, and I hope you will at least give it some open minded consideration.

  23. Maya
    Your struggle inspires me to be a better person. Your pain is raw and your love for your family profound. Keep being fierce. Thank your Dr. RoJo for the link to Dr Brown. That speech is amazing, as are you.

  24. Carolyn, this is Maya’s blog, not yours or anyone elses. Take your sanctimonius opinions to a religious blog. Leave this woman alone , she is walking the grief walk in her way and in her time.

  25. Maya always posts exactly how she feels, and in some ways she really reminds me of my mom. My little sister just died of brain cancer this winter, and a lot of what people say to make me and my family feel better just really piss us off. We, like Maya, are not very religious and when people say “it was god’s plan” or try to get my mom to listen to them about they think she should be doing, she gets pissed. When people say these things to her she goes off just like Maya, although not on the internet. Every parent that has lost a child, or sibling like in my case, can say that someone has said something to them that although meant with good intentions, really just rubbed them the wrong way. And when you are trying to deal with everything in your own way and just get through every day, it can piss you off and you can get really angry. That’s all that happened here. Maya has every right to be angry at the world, at people, at anything, because of losing Ro. She isnt harming this person by complaining, she is just letting them know how she feels. If it bothers you DON’T READ!

  26. I just wanted to say GOOD FOR U!! I’m only 19 but ur story made me wanna cry. Losseing someone is very hard even harder if its ur child. I was pregnant not to long ago and I lost my baby before she could be born. Before I could even see her face & it killed me inside. But I still think of her everyday.
    My mom tells me all the time to stay strong. So I say the same to u.

  27. No words. 🙂

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