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.

Life Before Asshole Cancer and Gina

Before all of this, I had a really good head on my shoulders. I lived a really happy, simple life. My life consisted of a handful of really close friends. Sisters that I had chosen to be in my life after waiting a really long time for them. Time spent with them would be dinner once a month, enjoying each other while having play dates with our kids, meeting up to go running or hiking. Simple things. My life with my husband was really easy. It was full of security, love, trust, and we took time to make sure we were keeping our marriage a priority. We did weekly date nights, to dinner or a movie. Occasionally, we would have the boys sleep over at my in-laws so we could have time just the two of us. We took a trip, once a year, just the two of us. But our WORLD was our 3 little boys. Woody worked really hard to be the best attorney, husband, and father. My friends and mom were always telling me they wished they could clone him. I knew how lucky I was. I know how lucky I am. I worked really hard at being a good mom. My days were spent tending to everything my boys could need, while teaching them our values, morals, and what it meant to be a good person.

I lived in a bubble. But a good bubble. A bubble full of being a good mama, wife, friend, and person. It’s just the way it was. And then it popped. In the hugest way possible. I spent my early years, before kids, helping others. I was passionate about Psychology and intrigued with the learning process that went into it. I worked at an eating disorder clinic. I thought it was what I wanted to spend my life doing, helping others. Woody and I got married. And soon after that, we were surprised to find out I was pregnant. And it was twins. It was a very shocking, happy surprise. After Liam and Quinn were born, they were all I wanted to do. Being a mom to the twins came naturally to me, like I had been waiting my whole life for it. I was young, didn’t have any mommy friends, and felt really alone though. Liam, Quinn, and Woody really were my entire world. I joined a parenting group, to make friends. We would meet once a week to voice our concerns, listen to advice, but it was more about making friends. I didn’t make many. I remember sitting in our classes and it would soon turn into a bitching session about someone’s husband. I would listen to people talk about their Nanny’s. Not many of the girls worked and I remember never being able to wrap my head around the fact that they didn’t work, but needed a Nanny. It seemed like a foreign country to me. I would show up for playdates. I remember people being shocked that 1) I didn’t have a Nanny ( uhhh.. i didn’t work and my husband was a Public Defender, so a Nanny was never even an option. I wouldn’t have taken it if it were anyway.) 2) The way they would make a big deal of me carrying in both of my twins in their infant carriers, without help. 3) The way they always assumed taking care of my twins was the hardest job in the world and they would always ask how I did it. I would just reply back, I didn’t know any other way. I loved every second of it.

I grabbed a couple close friends out of that parenting group. One in particular, named Gina. We met when our boys were about 6 months old. We instantly hit it off. She was such a free spirit, like me. She was real and always laughing and smiling. She would often call me up last-minute to ask if the boys and I could meet up to play. I would always say yes. It was the same way with her. We didn’t listen to they typical “mommy rules,” when it came to our 2 year olds. We would let them skip preschool and take them somewhere fun to play instead. They were always the kids that were laughing the loudest, causing trouble, running around, getting dirty and Gina and I spent every second with them, in the mix of it all. She was by far, my best mommy friend. Our boys were best friends. Than Ronan was born. I swear I blinked my eye and before I knew it, he was up and running right behind Arthur, Liam and Quinn. He was the 4th member to their little wolf pack and always caused more trouble than the 3 of them combined. Ronan was totally fearless and tended to show off and do naughty things just to get laughs from the boys. Gina and I soaked up every second of our boys, watching them learn about life and how to truly live like carefree little boys. It was pure bliss and we both knew it.

Then Ronan got sick. I was so wrapped up in Ronan’s new world and didn’t see much of Gina. She dropped off dinners a couple of times but that was about it. I felt like she was trying to help, but just didn’t know what to do. I was not the best at getting back to people so unless you showed up, pounding on my door, it was very likely that I had just stopped responding. There have been a few people in my life that have gone away who knew Ronan and I’ll admit, it hurts my feelings. But I also understand this is not a one way street and it takes a lot to be my friend now. I’m not afraid to admit that this may be much of my fault. It takes a lot to stick with someone throughout something like this. Gina went away. But I can honestly say, she was the one person, that I didn’t question and it didn’t hurt my feelings. I know Gina. I know the kind of heart she has. She has one of the purest hearts I have ever seen in my life. I know she went away because she was that hurt, upset, and sad for Ronan and our family. There was nothing selfish about it. It wasn’t about her; it was about us. That’s just the way Gina is. She is always thinking of others. Even though I haven’t seen much of her, I never doubted for a second that she wasn’t thinking of us. I know she was and always is.

I ran into Gina on Saturday at the boys’ basketball game. She came up and hugged me. She sat and talked with me for a while and I watched her fight back the tears as she told me how sorry she was, that she never knows the right thing to say. I told her that was the thing…. that she didn’t need to say anything because I know, even without her words. I know her heart and soul and she didn’t need to explain a thing to me. I meant that. I miss her. I miss the way our boys used to play together. I miss the way we would try to discipline them, but we would usually end up cracking up at the crazy things our boys said and did. I miss the way we would let their play dates last way too long and how we would always let them eat too much Ice Cream. I miss our spontaneous play dates and how we would ignore the world and just do whatever made our boys happy. I miss how we were driving in my car once with the windows rolled down and Ronan chucked a half full Gatorade Bottle out the window at another car going the opposite way. All the boys were howling with laughter. I laughed too but pulled over and went back to pick it up because, duh…. littering is not cool. But the laughter from the car, was priceless.

My life is different now. It’s sad and really empty without Ronan. But it has to go on for the sake of all of us. As much as I want it to stop, it’s not going to. I told Gina I missed her and I wanted to get our boys together to play. Will it be sad without Ronan? Without a doubt. Arthur loved him like a brother. Will it be painful for me? Without a doubt. But Gina is too precious of a person to not have in my life. It’s time to start letting old things back in because when you really find a true, real, genuine person in life… you don’t ever let go. Gina is that person and I am so thankful that she was blessed with knowing the real Ronan. The extra spicy most beautiful boy. She loves him. She will always love him. We all miss him.

I know this is how she will always remember him. Nudey at her house. He was such a little rule breaker.

Chicky Check yo’ self, before you wreck yo’ self

Ronan. Guess what I am doing, as I am writing to you? I am totally living on the edge…. behaving in such a self-destructive way. I am drinking a Coke at 10:00 at night, AND, eating those Extreme Airheads that you used to love. I am so on a path to self-destruction, that it is not even funny. Please baby. If this is living on the edge to me, after losing you…. I think I am going to be o.k. I have a cabinet full of booze that I never touch. If I was doing that, which I SO have every right to do…. than my lovelies could be concerned. But I am not. I am not going to lie. I had some hard things said to me tonight. Hard as in they were honest feelings from an angel of mine, who is just worried about me…. because of this blog. I get it. Most people would choose to live this out privately and not share their innermost thoughts with a worldwide web of strangers. But most of these people, who are worried that this blog is not healthy; have never lost a child. Thank god. I have people who are worried that I am not grieving properly, as if there is a right way or a wrong way to do this. But I took the honest words that were said to me tonight, and sat with them for a while. I questioned myself, for about 2 seconds. I had a total anxiety attack and called Tricia, bawling, hysterically. I often feel like I am being selfish for just putting this all out there, not caring of about who I am worrying, or even hurting, because of my raw, real, pain. I get it. I get that most people would choose to be quiet and not put everything out there that I am. I sat with Tricia and asked her if she thought I as sacrificing my family for all of this. If she thought I was being disrespectful to my Woo and my boys. I had a moment of panic wash over me that maybe, I am really an awful human being, to be so open and honest because my family is my number one priority; and I would never want to hurt them. She played Devils Advocate with me for a while, but ended up telling me that if I am being true to myself, than that is all that matters. And I am. Everyone grieves in a different way. I grieve every second of the day, and it is only at night that I am able to take my grief and write these words out that I don’t feel the pain that I feel all day long. It is my release. Is my stuff hard to read, especially when you are close to me? I can only imagine. But it is the truth and I know the truth scares the shit out of people. Is it too raw and real? Absolutely. But I have made a decision to continue on. It feeds my soul. I am not a quiet mouse who is going to shrink away in a corner and pretend and give a generic answer that we are doing fine. We are not, but I would love to see someone who is after going through something like this. We are trying to do the best we can. Which is why I am getting out of bed everyday, tending to my twins’ every needs. Which is why I am seeing 3 different therapists, as well as one with Woody and the twins. I am being pro-active about what we need to do, individually and as a family. I am proud of us, despite the people who don’t agree. For us, this is how we are dealing with this. With much honesty, love, truth, boldness, sadness, tears, all while trying to do normal things like a lot of family time.

I am not going to sit back and be quiet. Ronan would never want that. This is my time, that I actually feel happy and passionate and so connected to Ronan. I told Tricia, I don’t care if the only thing to come from my writing is making someone smile over the Starbucks I bought for a random stranger in front of me today. In my heart, I know that making someone smile over a free drink is really only something small; but it still made me feel good. I don’t get to feel good anymore; so little things like that help. Or how when I was running the other night, and we had a bad wind storm. In the middle of my run, I noticed someone in our neighborhood’s Recycling Bin fell over and papers and mail were scattered all over the street and the can was tipped upside down. I almost ignored it and continued my run. But I just couldn’t do it. I took the 10 minutes to stop, pick up all the papers, bills, school work, and used all the strength in my body to lift that full, heavy, Recycling Bin back up and put all the things back inside that were scattered all over the street. Would I have done this before all of this? I’m ashamed to say, probably not. I would have just chosen to ignore it and continued on my run, so caught up in my head. But I could not ignore it, and I have you to thank, Ro. You make me want to be a better person, everyday.

I sat with the second guessing all of this for some time. I than approached Woody about all of my writing. I asked if he wanted me to stop. I told him I would, if he thought it was going to add extra stress to our lives. We are on the same page. He understands and supports this. He knows that we are going to make big changes with this disease. For those of you who don’t know… the people who have made the most impact in this world, are the rebels. The one’s who don’t shut up, give in, and shy away. I am a rebel at heart. I have a lot to say about this fucked up thing like losing a kid. I am going to continue down this path, because it feels right to me, in this moment. And as of now, that is all I can ask of in life. What if because what I am putting out there, that a parent notices an early sign of Neuroblastoma or another type of childhood cancer? Because they are now paranoid when before they wouldn’t have given a second thought about it, just like we didn’t. What if they insist on a urine test or scan. What if they happen to catch this disease in the early stage, when it is most easily curable? I will one day, sleep better at night, knowing that I could have been the reason behind all of this. I could maybe have helped to save a child’s life because of the awareness I am raising. That right there, will make all of this hard, painful writing, worth it to me. I am not doing this only for myself, but the thought of helping others as well. This writing and sharing is an outlet to me. I feel like I am respectful to my husband as I choose very carefully what I talk about in regards to “us.” I know I need to have some boundaries and I know what they are. If I was choosing to share our sex life, in vivid detail, than I would totally get that I am being disrespectful. I choose very carefully what I share. I choose to share my feelings, what days are like after losing our best friend, how we are doing…. honestly. I am not scared of any of that because in the end my friends, the truth will set you free. So, if you are going to be scared of it, disagree with it, and not want to be in my life anymore…. because the pain is too hard and real, I totally understand. I would never judge another because of that. I will love the friends that I have had in my life, before this, and after this, even if they choose to go away. They will always have a piece of my heart. I accept anything thrown my way, especially if it is from an honest place. But the bottom line is, there is no formula for this. If you have not lost a child, you do not know how you would act or what you would do. I am doing what feels right to me. Is it wrong, not helpful, or going to destroy me? I have no way of knowing that. All I can do is continue on this path, that feels right to me today, because today is all that matters. I have the support of Woody and that is all I need. Well, not truly all I need. I have a slew of girlfriends that I would not be getting though this at all without them. And my twins. I am so beyond blessed for all of them.

I have a whole notepad that I wanted to write about tonight, but i am making this post too long already. I will write tomorrow if I have time, about some ideas I have. I am going to leave you with the first real sign I had today, that Ronan really is not gone. I have heard from so many people, that after you lose a child, little signs that they are somewhere, close by, will appear. For the first time, this happened to me today. I was driving to meet Danielle for our Inferno Hike. I had been in my car for a few minutes, radio on, some random song playing that I didn’t like, but I was too deep into my head to even think about changing the station. All of a sudden, my radio went from 96.9 to some station I had never listened to. It just changed, all by itself. I thought to myself, well that was weird. 2 seconds later, Steve Nicks, “Landslide,” started playing. What the hell. I started bawling. This song makes me think of Ronan so much. I KNOW it was him today that did that. There is no other explanation. The timing of the song was perfect, the radio freaking station changed by itself. That was truly my first real sign that he is still here; he is still with me.

Here are the lyrics:

Took this love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
And can I sail through the changing ocean tides
Can I handle the seasons of my life?
Oh oh I don’t know, oh I don’t know

Well, I’ve been afraid of changing
‘Cause I’ve built my life around you
But time makes you bolder
Children get older I’m getting older too
Yes I’m getting older too, so

I’ve been afraid of changing
‘Cause I, I’ve built my life around you
But time makes you bolder
Children get older
I’m getting older too oh yes
I’m getting older too

So, take this love, take it down
Oh if you climb a mountain and you turn around
If you see my reflection in the snow covered hills
Well the landslide will bring you down, down
And if you see my reflection in the snow covered hills

Well maybe the landslide will bring you down
Well well, the landslide will bring you down

:::::::::::::::: I mean could I have begged for a more amazing sign then this? No way. He let me know, he is still here, when I had almost given up in believing his little signs would come to me. They did today, when I least expected it. I bawled my eyes out and then Danielle and I kicked the Inferno Mountains ASS.

One other thing…. After I was questioning some things tonight, I just happen to go on Dr. Joanne’s Facebook page. She had posted this quote:

Live your way into the answers…

by Joanne Cacciatore on Thursday, August 25, 2011 at 8:36pm

I would like to beg you, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them in this moment. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

-Rilke

I am living all of my questions now, in the way that feels truest to my heart. I am not going to question any of this; ever again. This is me, right or wrong, I don’t know. But this is me, the truest me, the way I am choosing to deal with this. By being an open book, because the bottom line is, it feels right in my heart. And as of now, the fact that I can actually feel my heart a little bit again; tells me to continue on this path. By sharing my pain with all of you, all while being the best mom and wife that I can be right now, in this moment. Feeling the pain of losing Ronan, is something I feel so deeply every second of the day. But I am functioning, I am being as present as I can be, I am injecting myself into making sure my twins know how much I love them. How strong of a family we are. How we will survive this but it is going to take a lot of work, honestly, talking and love. I am proud of this blog, my honestly, my supportive husband, and that is all that matters, now, today. Because today is all we have to live for. Tomorrow could be gone in a second. I am not going to worry about the future anymore, because it is not in my hands. What is in my hands is my truth, my pain, my love and it changes everyday. I am living for today and nothing else. I have learned, there are no guarantees in life. I am not going to live my life thinking about the future. I am going to live my life as each and everyday is a gift, even when you are so blinded by pain, that sometimes you cannot see straight. But at least I am being true to myself. As of now, that is all I have to give. Please don’t ask of anything more from me. If you love me, you will trust me, be honest with me, and respect everything I am putting out there. Even when it involves telling God to fuck off. If it offends you; I’m not apologizing. Get over it, put yourself in my shoes, and question if you would have the guts to say what I am willing to say out loud, because it is what I am feeling. You don’t have to agree, you can tell me you don’t agree, but as of now, this is me. This is how I feel and I’m not going to sugar coat and pretend like if there is really a God, that this is any way, shape or form, acceptable. Ronan should still be here. Life lessons should not have to come at the cost of losing a child.

Most of you did not know Ronan. Let me tell you something. Imagine, your whole life feeling a little lost and incomplete. Than this baby comes along, and he is the missing link to your entire family. Everyone feels that way. It was a known fact that Ronan completed our entire family. Imagine meeting yourself, the VERY best version of yourself that you could ever be, and it came in the form of your baby. He was the best version of Woody and I that we cold have ever hoped to be. He was perfection. Imagine finally feeling complete, and then having it all taken away from you. Most of you will hopefully never know what it is like to lose something that special. And if you can even think you can feel a small piece of our pain, you have NO idea how much it truly hurts. The fact that we are still here, still fighting to make it though this, together, is something I don’t think a lot of people could do. I am proud, I am lucky, I am awakened. I am going to do whatever it takes to change the way Childhood Cancer is ignored. I am not going to be silenced. Ronan lives inside of me and he will forever. I will now be Maya Badass Inca Thompson; Forever. I am going to be loud and not be ashamed. I owe this to Ronan. I am doing this, for him.

Love me or leave me. I embrace all of it. The good, the bad, and the ugly. Because I know sometimes my writing is so ugly, that it makes me sick. But it is the truth and the truth about Childhood Cancer, deserves to be heard.

G’nite my loves. G’nite Ro. I love you to the moon and back. I hope you are safe, snug as a bug in a rug.

xoxox

Love and the Locket

Ronan. It’s days like today that give me just a sliver of hope that I am going to be o.k. That being without you, won’t kill me. I know this because today….. I felt something that I haven’t don’t feel very often anymore. Almost happy.

The morning started off as usual. We woke up around 9 and Quinn had asked to have a day at the beach. We texted Auntie Karen to see if Olivia could meet us. She sent her over and we headed out to enjoy the San Diego sun. We went down to the beach and spent a couple of hours there, being lazy and then we swam in the ocean for a while. We headed up to the pool after we got tired of the sand and the flies that seemed to be everywhere. We spent the next couple of hours at the pool and Quinn and Olivia played their little hearts out. Auntie Karen joined us for a bit and we sat and talked about you. She misses you so much. It felt nice to talk about you with her though. She told me how you will always be with her. I know this. You are part of her and always will be. She will forever be your favorite crazy “old lady.” We still giggle all the time about how you would call her this.

After our pool time, we got ready for the evening. Susie drove over from Mission Beach to see us. Macy, Quinn, Susie, Olivia, Liz and I all walked into town to have dinner. All I have to say is your New York Miss Macy is like chicken noodle soup for my soul. She makes me laugh like no other. Somehow, when we were with Liz a few nights ago, Macy started talking in her fake British accent. It caused Liz and I to crack up because it came out of nowhere and it was so awful. We have been teasing her about this for days now and it has turned into a huge joke. Tonight, we spent most of the evening being loud and laughing, while we all talked in our fake British accents. It was an evening full of taking silly pictures, British accents, laughing until our sides hurt and just having wonderful, innocent, fun. Quinn was in heaven and joined in and soaked up everything that we were saying and doing.

After dinner, Susie had to head out and the rest of us headed down to watch the sunset at the beach together. As we were setting our things down, I took off the locket that Macy bought me last week. She found it at a shop in North Park while we were waiting for our table at a restaurant and fell in love with it. She bought one for herself and one for me. It’s gold, long, heavy and we talked about how we would put a beautiful picture of you in it. It is so gorgeous and has become one of my favorite pieces of jewelry. Just knowing that you are close to my heart and inside of it, brings me such a feeling of peace. I took the locket off tonight and set it in one of my shoes. I ran off and forgot about it as we spent the next couple of hours playing on the beach, doing hand stands and silly things.

As it started to get dark we decided to head up to the Hotel Del to get ice cream. As we got there, Quinn asked to go into the toy store instead. We all agreed as the line for the ice cream was really long and it was hot and stuffy in there. We played in the toy store with him for the next 30 minutes all while still talking in our very loud British accents. We were getting ready to leave and I noticed my locket was not on my neck. I immediately went to my purse to see if I had put it in there. No dice. I panicked and told the girls that I had a slight emergency as I remembered I had set the locket in my shoe at the beach. Macy and Liz stayed with Quinn and I grabbed Olivia to come with me. We rushed back to the beach and tried to retrace our steps as best we could. Luckily, we sat and played by a very big hole in the sand which is how I got us back to the spot to where we were sitting. Turns out, this hole was not as helpful as I had thought because we did set our things down kind of far away from it. I knew was at least a starting point and it was better than nothing. We started searching for my locket and I could feel myself starting to panic. It was pitch black and the beach just looked so big; like it could have swallowed us whole. That is how I felt and right as I could feel the tears to begin to pour down my cheeks, Olivia yelled, ” I found it!” I could not believe my ears. The locket was half buried in the sand, it was dark, but somehow Olivia found it. A wave of happiness washed over me. I hugged Olivia and told her thank you. That sweet girl saved me today. It was such a good day and if she would not have found my necklace, the day for me would have completely been ruined. I know it is only a material thing, but the fact that Macy bought it for the both of us, to keep you closer to our hearts means so much to me. Thank you too, Ro. For helping Olivia tonight. I know that was you. I know you wanted me to have a good day today as you know how much I need that every once in a while.

We all came back up to the condo and I headed out for a quick run. It was late, so I didn’t do my usual route of 6 miles. I did a fast 4 instead. Macy wouldn’t have it any other way because of the fact that it was so late but she knows how I am if I don’t get my run in. She let me go but not before I gave her an exact time of when I would be back. I’ve given her the name of “wife,” now. She is my surrogate Woody. I am going to be so sad when she has to leave tomorrow. I know Quinn will too. He loves her so much. We will see her next week though as she has to be in Newport for a work trip.

This morning Papa Jim sent me a picture. It was of Liam and his first Salmon that he caught. They went out fishing on Papa’s boat early this morning. What a great way to start off my day. He looked so happy and proud of his fish. I was sad that I wasn’t there to see it, but I am so thankful for the happiness that I saw in his eyes today in that picture. He will remember that for the rest of his life.

O.K. baby. I’m going to try to get some sleep. I didn’t fall asleep until 4 a.m. last night and I promised Macy I would try to get to sleep earlier tonight. Quinn is snuggled up tightly in between the two of us. I will kiss him goodnight for you. I miss you so much. Thank you for the love and laughter today. Thank you for Macy. I would have never found her if it wasn’t for you. Your little gifts are everywhere. Sweet dreams my gorgeous boy. I hope you are safe. I love you, Ronan.

xoxo

The sweetness of simplicity

Hello my friends. I’ve been hiding from you too… hence my writing to just Ronan; which I will continue to do as it feels good to me. But I still want to write to you as well. I wish I could tell you things are better; but they are not. I wish I could tell you that we are learning to come to terms with all of this; but we are not. I know this is still all fresh and new and I imagine it will be years before we will learn what happiness feels like again. I know that the absence from Ronan will always remain in our hearts, in our minds, and in our souls. That will never go away. I am doing the best I can do; today. That could all change tomorrow. I can tell you that I didn’t end up in a mental institution like I had suspected I would. I can tell you that I didn’t blow my head off with a gun, like I have dreamed of. I can tell you that both of those things won’t happen because that to me feels too selfish and that right there will prove that cancer has completely won and I won’t let that happen. I won’t do that to Ronan, to Liam, to Quinn, or to Woody. Or to any of you. I can tell you that I am still here and one of the hugest reasons is to keep Ronan’s memory alive. I have a big job ahead of me and although I am not ready to fully embrace it yet; the time will come when I can and I will. I would like to hide out for a little while longer. I am taking a break from the everyday things and embracing the love from my husband and twins. It’s been hard. I feel disconnected from everything and everyone. I am having to learn to feel the love from my twins again. Not that it ever went anywhere, but when I was taking care of Ronan I was with him 24 hours a day, for 8 months and fully submerged in his world. The bond that came out of that is something that I will never feel again. Our relationship formed into something so much deeper than anything I have ever known or will ever know again. Our relationship was filled with a love so deep, so painful, so raw, so heartwrenching, that it went to a whole different level. And I know that I love my twins just as much as Ronan and I would have fought just as hard for them, but the fact of the matter is I didn’t have to. I went through this with Ronan and in 8 months I gave him every ounce of love that I had. It was intense and exhausting and I wish this would have a different outcome. I wish I didn’t have to pour everything I had into him just to have him leave here. I was prepared to give him everything I had for the rest of my life. But instead I had to give him everything I had, for the rest of his little life. And his life was cut way too short, way too fast. All of this leaves me feeling empty, lost, and extremely sad. I know I have to go on, that I have a purpose in life, but it does not feel that way at this moment. After 8 months of fighting, I am now left with nothing. The fighting is gone, Ronan is gone, and the quietness and calmness that is seeping in is not welcomed. I don’t want it, I don’t want to embrace it. I just want Ronan. I know that he is not going to come back, at least in the way he was before his death. So, I am going to have to learn to live a life again without him. I am going to have to work to rebuild our family. I know this is not going to happen overnight. Everyday for us is going to be a struggle. But I also know that my actions and the way I handle all of this is going to have a huge impact on how we get through this. So, I am going to take a little break from Phoenix. I am going to throw myself into the world of Liam and Quinn. I am going to love them with everything I have and Ronan is going to help me do this. I know he misses them almost as much as he misses me.

I’ll never forget at Ronan’s service when one of Ronan’s doctors, Dr. Wood, came up to me and hugged me. He then looked at me and said, “Please give those 2 boys the best life possible. They deserve it.” I made him a promise I would. I’m not going to let him down or my twins down. I will continue to be the best mom I can to them. I made a huge promise to Dr. Maze too. He is asking a lot and at one point I told him I could not promise the things he was asking of me. But today, I feel differently about it. I feel like I can maybe come through with what he is asking of me. After all he has done for Ronan, I am having a hard time ignoring what he wants. I am going to take these next few weeks and work really hard on some things for him. I told him that when I come back, I will try to be stronger because the way I left him, was awful. Awful in the way that I could not even drive myself home because I had to sit in my car and bawl for an hour as I did not want to go on. I somehow managed to drive myself home through all of my tears and anger. I somehow managed to let Ronan’s little voice guide me and listened to him tell me how I cannot give up so easily. I know he does not want to see me yet; he needs me to help save our family and to help raises awareness for the sickening disease that stole his life. Even though he is gone; he still needs me just as much as before. Even though he is still gone, when some stranger asks me how many children I have; I will always say 3. We will never go back to being a family of 4 again. We talk about Ronan everyday as if he is still here. That will never change.

Yesterday, I spent the day with Liam, Quinn, and Woody. Despite Ronan being gone; there was a lot of laughing from the twins. They are as happy as can be and I know a big part of that is all the time they have been having with Woody and I. Their happiness is so simple. It is because we are together, as a family, enjoying the laziness of summer. As painful as it is for me, I can tell it is a little healing as well. I’ve missed my buddies. They are such amazing little boys who have been robbed of so much. It’s time to slowly make things up to them. One day at a time. I am so thankful for them because I know without them, I would not be here. That I can guarantee. But they are here and they are the most beautiful little boys who love me so much. Who love Ronan so much.

Alright my friends whom I’ve missed so much. Time to go and enjoy my little men today. Blessings and love to you all.

xoxo

We miss you, Ronan.

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Happy Easter Ro baby

Oh Ro baby. Happy Easter. I’m not going to lie. It was a hard day today. At one point, I did not think I was going to be able to get out of bed. I wanted to spend the day hiding under my covers. It took me a few hours once I woke up, to get things started for the day. I was barely functioning. We planned on going over to Woody’s Uncle Larry’s house where all the cousins were going to be. In my head, I kept thinking, how am I going to face everyone? I’m way too sad. But I knew how much my twins were looking forward to it and I knew it would be good to be surrounded by our loving family. Woody and I got the boys ready and dressed and then got ready ourselves. Out the door we went and I turned my frown upside down; as best I could.

The day was spent watching the boys playing, laughing, running, swimming, and enjoying their cousins. Ronan even got a little wet and ran around as much as he could but stayed by my side most of the time. It was good to be with family on such a special day. There was a sadness in the air, but it was overcome by the beauty and strength of Ronan. I refused to let cancer ruin our beautiful day. Ronan was happy, smiling, and laughing while throwing water balloons at his cousins. Today, cancer did not win. Today, we held our heads high and enjoyed his little life to the fullest.

Ronan was ready to go after a couple of hours so Woody and I took him home while the twins stayed behind to play the rest of the day away. We came home and Woody ran out to do some things which left me here alone with Ronan for what I thought was going to be some quiet time. No quiet time allowed as I was told by him. He was all ready for a Star Wars battle so that is what we did. Fernanda stopped by to drop off some of her amazing confetti filled easter eggs which Ronan smashed over my head. She had her Brando with her and I wanted to just eat him up. Cutest thing ever. He was dressed in a tee-shirt, his skinny jeans, and cowboy boots. She has the most beautiful children and I was so happy they stopped by for a few minutes.

After Fernanda stopped by, I had texted Gay  earlier to tell her Ronan was really wanting to see Cal. She then came by about an hour later with her boys, Cal and Chet. Ronan was over the moon. They played and Gay helped me get a lot of the little things around the house put away. I am so thankful for my wonderful friends and the way they are handling all of this. They all refuse to give up and are more than rising to the occasion. I will never stop being blown away by all of their support and love. We are so blessed to be going through all of this with the most amazing people by our side.

I am finding laughter in the stupidest things these past few days. Not much is making me laugh anymore and laughing is one of my favorite things in the world. Woody has put on our “South Park,” DVDs. So stupid, vulgar, and immature…. but I have been dying laughing at them. Trey Parker and Matt Stone = Freaking geniuses. I am such a sucker for some dirty, foul-mouthed humor. Works every time. Even in my numb, fogged induced state of mind.

Tonight, we did normal family things. I got to tuck my Liam and Quinn in to bed which is such a precious gift to me now. I spent today washing all of their sheets and duvet covers. Felt so good to do something normal. I love laundry and I could never get tired of doing it. It is my favorite normal chore in the world.

I thought about a lot of you today, even the people I don’t know. I imagined your faces that I have made up in my head and wondered what you were doing on this day. I imagined a lot of your kids dressed up in their Easter best, a lot of you at church, and all of you watching your kids with your love for them pouring out of your hearts because you know how blessed you are to have them and I know how even more thankful you are for their health. Thinking of you all made me happy and warmed my heart. I hope I get to meet you all someday. I would like to give you a smile and a hug and thank you for supporting our family, whom you don’t even know. I am so thankful for all of you as well.

Tonight, after all of my babies are asleep I am going to go and kiss my husband and thank him for being the best man in the world and tell him how proud I am to be his wife. He deserves to hear this everyday. He is simply the most amazing man living on this planet. I will always think I am the luckiest girl alive that the stars aligned and we met when we did. I’ll never forget our first date and how I just knew he was the one. 11 years later and here we stand, going through the hardest thing of our lives, but we are going through it together, not apart. As much as I would like to put up my walls and as much as I try, Woody always finds a way to knock them down and I let him back in. He is the best thing that has ever been mine, that Wooddawg of mine. Mine forever. No matter what we have to go through. We will never let go of each other.

Sweet dreams to you all. I hope you had a beautiful day with your beautiful friends and family. I love you all so very much.

xoxo

This is from my sissy, Liz, tonight. I love you so much, Liz. This is just what I needed to hear.

Easter represents rebirth and new beginnings..how appropriate. Love you and your family with all my heart. And remember, we don’t call Ronan a rockstar for nothing!! 🙂 xoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxooxoxoxoxoxo

Dear Dr. Kushner-

You want me to give up on this? You gave up so easily but I will never. Did you forget the most important factor in your decision making? Him. He is not like other little boys. He is our miracle, our Rockstar, our gift. This is not over and it breaks my heart that you stopped believing. Miracles do happen; everyday.

Fondly,

Maya Thompson

The circle of life…. sucks

We woke up early this morning and ready for our clinic day. Fernanda, who flew all night arrived just as we were getting ready and ran down the street before seeing us to grab me a coffee. Ronan and I went out on the street to meet her and I cannot tell you the wave of happiness that washed over me as I saw my friend and her gorgeous smile, waiting across the street for me with two coffees in her hands. I was so happy to see her and we held each other tight as we embraced for our hug. She has such a way with me and I am instantly comforted by her mothering instants. I often feel like she is not only helping me take care of Ronan, but she is so good at taking care of me as well. I usually have a hard time letting go and letting other people do things for me but with Fernanda, it just comes naturally. I feel like she is my female version of Woody, if that makes sense. She is a source of such strength and comfort to me, much in the way that Woody is. I always know that when Fernanda is around, that everything is going to be o.k. Trish asked me tonight how in the world Fernanda does it all. My reply was because she’s Mary Freaking Poppins. Seriously. There are not many women in the world like her. We have such a strong connection and I am often amazed at the way we sync so well. Many times, I will be thinking about her, and then 10 seconds later she will call or text me. Our minds seem to be thinking the same thing and all I have to do is look at her to know this. Words are sometimes not even necessary. I am so honored, blessed, and thankful to have her here with me. I will never get over her leaving her 5 beautiful babies and husband at home to help me and as much as I tell her this, she acts as if it is nothing, but it means the world to me.

After I reunited with Fernanda, we headed off to Sloan to get Ronan to the clinic for his platelets. He was not happy about going and being “hooked up,” as he calls it. But I assured him it would only be for a short amount of time. We arrived and the nurse got things moving pretty quickly. Ronan was entertained by Fernanda waiting on him hand and foot and we promised him a trip to Toys R Us after we were done. We finished with our platelets quickly and went to meet with one of  “The Team,” members to discuss the plan for the next couple of days as far as scans go. Ronan coroporated for his exam and we were soon out of the door and off to enjoy the rest of the day. We decided to walk to Toys R Us, which was about 3 miles away but Fernanda and I agreed that the exercise and fresh air would be good. Almost as soon as we started our walk, Ronan fell asleep in the stroller and remained that way the entire trip there. It was a fairly wet, dreary, New York day, but I am such a sucker for this weather that I enjoyed walking in the rain.

Toys R Us was a hit but it was packed full of so many people. With Passover, Easter, and Spring Break here, the streets of New York are just as busy as Christmas. We couldn’t escape there soon enough and hailed a cab back to RMH instead of walking again. Fernanda picked up food at Delizia’s for us and we ate it together on the second floor in the community dining area. After lunch, she headed back to where she is staying so she could get in a little nap. Ronan and I were both tired too, so we came back to our room to rest. Before we came back to our room we went to check to see if we had any mail. We were told we did and it was a big box from our favorite little boys’ line; Fore!! Axel&Hudson. We took the box up to our room and I helped Ronan open it up. It was full of the most adorable clothes and hats for Ronan, as well as the cutest little girl Fedora hats. I handed out the hats to a bunch of the girls here and they were so excited. I think the moms were more excited as they kept trying to see if they would fit their heads. It made me feel so good to light up the faces of these beautiful girls today. Thank you Denise, for allowing me to hand out such amazing gifts. Ronan, being the stylish kid he is, lit up like it was Christmas. He kept trying to wear three hats on his head at once as he said he couldn’t choose because he loved them all. Denise, if you are reading this, please know that you and your company are absolutely amazing to support pediatric cancer the way you do. You are inspiring, brilliant, and if the world were full of more people like your company, it would be a much better place. Not to mention, the quality of your clothes are to die for! I am so proud to put my little Rockstar in your gear. Thank you from the bottom of our hearts. Everybody needs to check out their website, I should have a link on the side of my blog. I will forever support you and your clothing line. It makes Ronan’s day to be all dressed up in your adorable boy clothes and hats.

After we woke up, Fernanda texted me to say she was ready to come back over so I could go on a run while she watched Ronan. My run didn’t end up happening as we went across the street to Barbra’s apartment, who runs the organization Candlelighters, as she had a Star Wars treat for Ro and I wanted her to meet him anyway. We stayed for about an hour and enjoyed the company of Barbra, her husband, another mom, and her son, Jack. It was soon getting late so we headed out to grab dinner before Ronan got too tired. We sat and I ate for Fernanda. She talked me into some protein and asked if I really wanted to eat it or if I was just doing it for her. I told her it was all just for her and I did the best I could on the food in front of me. She is such a mother hen, which is a very good thing for me now. There was some awful woman sitting next to us at dinner and I was wondering if I was the only one picking up on it, but I gave Fernanda my look and I knew she knew it too. She kept looking at Ronan and it was if she wanted to throw up her dinner. She kept giving us the dirtiest looks and I wanted to say to her, “I’m sorry, if the fact that my child has cancer bothers you so badly that you can’t  eat.” The look of disgust on her face was so obvious that I wanted to go over and strangle her. When we were walking out we got a few more looks or more like complete stares. I noticed them all and Fernanda did too. She totally gets what I was talking about yesterday on my blog. The staring is everywhere. If you’re at least going to stare, have the balls to come up to me and say “God bless you.” Or “We’ll keep him in our prayers.” Don’t just be rude and stare. Grow some fucking balls and be proactive about him, who has a name. His name is Ronan Thompson, and he lives on this fucking planet. Stop acting like he’s from outer space. Somethings gotta change because if this  keeps going on, I may go postal on someone’s ass. After dinner we came back to RMH and played with Ronan. He was tired from todays events, as we all were. Fernanda hailed a cab and went back to her place. After she left, Ronan decided he was still hungry and he wanted scrambled eggs to eat. I happily made them for him with extra butter and extra cheese. Anything to fatten my baby up. We sat while he ate and talked with some of our friends here. I’m not going to go into details but I am saying extra prayers tonight for a very special little girl here whose mother I have fallen in love with. She isn’t doing too well and watching what the mother and father are going through is heart wrenching. It is a place that no parent wants to be and all I can say is another big Fuck You to cancer because there are no other words.

While I was taking Ronan upstairs to get ready for bed I was talking to Woody. I guess he told me last night but I was asleep and don’t remember our conversation, but our little wiener dog, Monroe, passed away. As soon as he said those words the conversion we had the night before slowly started to creep into my head. I started sobbing hysterically. Our two dogs, Monroe and Douglas haven’t lived with us for about 3 years due to trying to sell our house, then selling it and moving into our new house, so they have lived with Woody’s parents who also had 2 wiener dogs. While my 2 were there, one of their dogs passed away so we just ended up leaving our 2 so they could be with the one dog Kay and Charlie had left. They were happy there, together, and Woody’s parents have the perfect back yard for the 3 little musketeers. We missed them a lot but life all of a sudden got so busy, and we would spend time with them when we went over to their house. Little Ro, as we called her was an itty bitty thing. She loved to lick you and be held and was always shivering because she was cold. She was the sweetest thing. Hearing that she passed away hit me harder than I though it was going to, considering what we are dealing with now. It still made me very upset as it’s watching the cycle of life and that is never an easy thing. Woody bought those dogs for me before we got married. They were our first, “babies.” Tonight, I will say a little prayer for my little mohawked Monroe. She was the best puck rock Dachshund that ever lived. R.I.P little Ro. I’m sure we’ll hear your barking all the way down from heaven:) We all loved you so much.

So tomorrow. Ronan has a CT scan at 11:30 and we are tying to do it without anesthesia which I totally think he can handle. We of course need this scan to be good and I know they will be good. I have faith, hope, and love surrounding me at all times, so it cannot go another way. Please pray for him extra hard tonight. I will update you as soon as I can.  Thank you all my beautiful souls. You keep me strong when I am at my weakest and you push me forward when I think I can go no more. With all of you on our side, we can get my baby boy through this. Cancer has no idea how strong of a child he is and who they are messing with. They picked the wrong Ronan “Fucking” Thompson. I wonder when Ronan does beat this if they would really let me change his middle name to that. I’m sure not, but writing it out cracked me up tonight. He surely deserves it. My strong son, my strong boy, he will not be defeated. He is going to come out the other side of this with such determination to do amazing things in life. I cannot wait to see what kinds of things he comes up with and I will fully support him in everything he does. A mothers love is an unrivaled force of nature.

Ambien kicking in. I’d better get off this computer before I start writing crazy things. Good thing I don’t have a car to drive;) Totally kidding. I am going to cozy up in my twin sized queen converted bed with the most beautiful boy in the world. Just don’t tell my husband.

G’nite peeps!!!! Have a beautiful day tomorrow. G’nite Daddy Woo, Liam, and Quinn. Miss you!

Extra special G’nite to my twins’ 1st grade teacher, Mrs. Martin. Hope you had a beautiful birthday day, Cindy. You deserve it so much for being the best teacher we’ve ever had. We love you so much.

xoxo