Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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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.

Pain is my Peace

Ro baby. Hi my spicy boy. It’s time for my love letter to you tonight. I’ve missed a couple of days of writing. I always hate when I don’t get to write to you. I’m learning that this writing thing is like a beautiful, tragic, love story. One that I don’t know if I’ll ever be able to stop writing because I never want it to end. It’s my way of keeping you somewhat alive, I guess. It helps me, even though it may seem like nothing is helping. I think today is Monday….. I think. Crap. I’m wrong. It’s Tuesday. The days are still blurry and the things that go on in my days are all jumbled together. I remember yesterday…. somewhat. I didn’t wake up for boot camp. Sorry Tammy. My sleeping is still out of whack. I stopped taking my Ambien and started trying Ristoral. We shall see. The first night I took it, I still tossed and turned and had very vivid nightmares. So I went to basically not dreaming at all for the past few months to having such excruciating nightmares that I woke up 5 or 6 times during the night drenched in my sweat. I wandered around the house. Looked outside at the moon for a while. Sat in your room. I fell back asleep around 4 a.m. There was no way I could get my booty to boot camp. I dropped your brothers off at school after sleeping until 7, then I went hiking at 9 a.m. It was bloody hot. I was determined to sweat all of the demons out of my body from the night before. Sweat them out I did. It must have been about 104 by the time I got to the top. It felt good. I did the same thing today. Same time, same place, with nobody else in sight. I love how empty the mountain is. Once I get to the top, I sit there for about a half an hour and cook in the sun. I talk to you out loud a lot. I always cry. I tell you, hi. I tell you I miss you. I ask you where you are. I tell you I’m sorry. That I need your help to get me through this. I tell you I don’t know what to do without you and I always tell you I hope you are safe. It’s become therapeutic to me. As I was running down the mountain today…. full speed with Katy Perry blasting, it dawned on me. This exercising is the ONLY thing that gives me some sort of relief from all of this pain. It is during this time that I have to focus on not breaking my neck as I plow down the hill as fast as I can. I focus on my body and pushing myself so much that the physical pain hurts. I don’t stop no matter how tired or out of breath I get. I want to stop sometimes, but then I think of you. I like the physical pain as it gives my mind a break. It is my church, my meditation, and it is slowly becoming my peace.

Oh, Ro. You made me smile tonight. Just as I am writing to you, the thunder starts, the lighting, the buckets of rain. You know how I love the rain. I’ll never forget that one day with you. We had just moved into our beautiful house. It was your nap time and it was pouring rain. We made a bed on the floor in my room and sat and watched out the french doors in my bedroom as the rain flooded everything. We sat and watched and listened. We rolled around and laughed and I don’t think you ended up taking a nap. You little rule breaker, you. It was pure bliss. I remember that moment, and how happy I was. I felt like the luckiest mama in the world to be there with you, watching the rain. It was one of the sweetest, most simple moments of my life. I have Quinn here with me now. We made a bed on the floor in the same spot the two of us did. We are watching the rain, together. We are missing you, together.

Last night, we had Curriculum night at your brothers’ school. Holy anxiety attack. I about lost it. It was way too stuffy in the cafeteria, way too many people, and way too long to stand still. At one point I whispered to your daddy that I had to leave. He just grabbed me tight and told me it was o.k. That I could do this. I stuck it out. Melissa was there, close by. She knew I was about to flip out. She said she almost grabbed me and ripped me out of the cafeteria. I so wished she would have. But I survived. Don’t ask me how, but I did. We had to go to your brothers classrooms after the cafeteria. I went to Quinn’s, your Daddy went to Liam’s. I did o.k. there. I was strong and fought back the tears as a picture of you popped up on my phone, randomly. My mind started racing about how I would never be taking you to school again, how I would never get to meet your teachers, your new friends, etc….. I quickly wiped the tears away and tried to get back to focusing on the task I was there to do. I left the classroom quickly when the talking was over. I didn’t stay to sign up for things with the other mom’s. I couldn’t mentally do it. I went to find your Daddy but he was still in Liam’s classroom. Just as I was getting ready to sit down outside, Melissa came and found me. My sweet saving grace. She didn’t want me to sit alone, so she sat and waited with me for until your Daddy came out. Thank god. I had the chance to say hello to some moms that I really like though. That was nice. It is always nice to get a hug from some friendly faces. It’s funny though all of this, you really see who are genuinely, good-hearted people. I feel like I have a gift for this now. I had the chance to give somebody a big hug that I have wanted to do for a long time. One of my busy, little bees. It felt so nice to hug her and tell her thank you. I want to do that with everyone who helped and I am going to set something up, as soon as I get myself a little more organized and my head on straight. I am hoping that day will come sooner rather than later.

Today, I hiked again. Bloody hot but worth it. I don’t mind the heat the way I used to. As long as it involves an escape for me, I’m down with it. Bring it on, Mo Fo. I am getting my butt up for boot camp tomorrow though. I have my alarm set. I have to otherwise I know what happens if I don’t. I sit and obsess about it all day long. Add it to my list of things I’m fixated on now. Boot camp or Bust. Who’s going to start joining me???? Hello my friends…. I’ll take all the motivation I can get to get there. If I had you all, counting on me, I would be less likely to skip days. www.phxbootcamp.com. Get your butts there with me. Stop making excuses. I promise, it will change you life:)

So, Ro baby. I’m nervous to tell you this…. but I actually had an o.k. day. Just o.k. but it was a better day than I’ve had in a long time. I had lunch with one of my busy bees. It was lovely. We talked about The Brightest Star in the Sky event next year. I got to know her a bit and loved every second of it. Pure heart, smart, caring, and no hidden agendas and passionate about making a difference in this world. She had me at hello 🙂 I’m so thankful to have had so many people step up to the plate, to teach me that they care more about shopping, vacations, and wine drinking. Not that there is anything wrong with that, but adding a little something more to your life in such a meaningful way is good for everyone. It’s good for the soul. And a good soul can make all the difference in the world. After our lunch, your daddy picked me up so we could go to our therapist together. I was honestly dreading it. I feel so disconnected to everything now. Having to reconnect with your daddy, in front of a stranger, gave me a lot of anxiety. But once we got there, within 10 minutes, I knew this was going to be a good thing and something we desperately need. It was hard and we didn’t even get into the hard stuff yet. It was mostly an introduction and then she wanted a background on us and what we had just been through. There were a lot of tears, a lot of not being able to speak because having to re tell the story of you is so unbelievably painful. But we did it as best we could. And we did it together. I am proud of us. I liked this lady too. She knows stuff and I liked her honestly. We will go back together, I’m sure for a long time, as this is not something we can work through overnight. This is also something we cannot do without outside help. We both know this. Afterwords, we spent some time together and it ALMOST felt good to me. ALMOST. My pain is not capable of letting me feel good about anything now, but it is the closest I’ve come in a long time to feeling this way around your daddy. He is the most amazing man on the planet. I know this. As hard as all of this is, I think we will be o.k. I know there are no guarantees in life, but what we have is too amazing to throw away. He is my best friend, despite my brattiness that I often display to him. I don’t mean to, which is why I have to figure out how to deal with all of this pain, instead of taking it out on him. He is my easiest target and does not deserve any of it. You don’t get a better man/father than the Wooddawg.

Alright my little man. I’m tired. I’m going to try this Ristoral tonight We shall see. I love you to the moon and back, my blue eyed boy. I miss you so much and hope you are safe. Sweet dreams, my dear.

xoxo

                                                   I LOVE US….. FOREVER TOGETHER.

Sparkly stars in the sky and all the one’s right before my very eyes

These are the kind of friends I have. The kind who come over to your house in the morning, bring you coffee, insist that you give them your car keys so they can go wash and put gas in your car. Not to mention pick up your prescriptions, some pictures you had developed, all while you put up a fight in which they were not having. The kind of friends whom stop by, bringing their sweet little boy with them to play with Ronan and insist on you giving them a list. The new friend, whom you have never met before, but is dying to be a part of our lives because she and her family have been so deeply touched. The friend whom lets me drop my crew off to play with her crew while I went to my therapist. The friend who let me rant and rave all while agreeing with me that this is bullshit, and she knows because she has lived through it. The friend who drops off boxes on your doorstep so you can try to pack up your life and send it to New York. This all happened today; these amazing woman helped me though today without me even having to ask. I don’t know how I got so lucky. Thank you, Melissa, Gay, Tiffany, Pam, Stacy and Bethany. You all will really not let me fall, no matter how hard I try.
Today was busy indeed. I had a mild meltdown on the way to see “The Good Doctor.” A panic attack, an almost nervous breakdown… I had to call Marisa on my way so she could rationalize everything for me. I don’t know how I made it to my appointment without getting in a wreck. But I did. The good doctor took one look at me and knew I what a mess I was. We went over my prescriptions, the doses, and we had a short but productive talk. I felt a little better after leaving there, but my nerves were shot. I am doing my best but this week has been especially hard. I have been trying my hardest to enjoy my time with Liam, Quinn, and Ronan but the littlest things put me on edge now. Any little argument between my boys is enough to make me want to lock myself up in an insane asylum. My patience is worn thin and I have the patience of a saint. I am struggling with trying to be a normal mom…. whatever that may be. I just want to be the mom I was before all of this but is is so hard.
Woody came home and I slipped out for an hour to meet a friend for dinner. Just what the doctor ordered. We sat outside, ate good food, and the weight of the world seemed lifted off of my shoulders for the hour that I was there. I found myself laughing, enjoying our conversation, and it was just very easy, as it always is. The stars were shining so brightly tonight, I kept looking up to see if I could see a shooting star to make a wish on. I then decided I didn’t need a star, because one of the most beautiful stars was sitting right before me. I made a wish on my friend, the same wish I make 50 times a day. It made me smile. I came home feeling much better about things. It’s funny how certain people just bring out the old me, the funny me, the happy me. The me that is buried so deep down, but when she comes out I so enjoy being her. Tonight was something I very much-needed. An hour of pure bliss and happiness.
Ronan is still in a lot of pain. It’s absolutely killing me as there is nothing I can do. I mostly sit and try to comfort him, get him to take his pain medication, and try not to throw up at the thought of him hurting so badly. I sit back and wonder what it feels like for his little arm to hurt so much. Does it feel broken? Does it burn? Does it throb? However badly it is hurting, I know it is intense. He never complains about a thing and watching him with this is like daggers in my heart. I cannot wait to get him started on Monday for his next round of chemo. I never in my life would have thought I’d be so happy about getting back on his magic medicine but I cannot stand to see the pain he is in. He needs it badly.
New York is going to be good. And I am going to be good once I get there. It is my Ro baby’s city that is going to heal him; I just know it. We are going to get there, get into our routine, and get him better. I know he is going to respond well to his treatments; I have all the faith in the world. New York really is a magical place and I honestly feel that energy when we are there. We always do so well and we can do this. We will do this while refusing to let go of the rope we are holding on so tightly to. We are just going to keep tying knot after knot so we can keep hanging on. We are never letting go of our rope and I am never going to let Ronan slip and fall. I will hold on to him for the rest of my life and I will be thankful for every second of it. I never knew how precious life really was until all of this. It all seemed so trivial to me…. just another day in the life of Maya Thompson. Now I know how precious our time here on earth really is because I am watching my 3 year old fight for it every second of the day. It is so wrong, so sad, but so inspiring. Ronan has made me realize that my time here is meant to change the way certain things in the world work. He is laying out a path for me and I am not sure where it is going yet…. but I am going to keep following it until I figure it out. I love him so much. My sweet little seal.
Tomorrow, we have the clinic visit for blood and possibly platelets. We will say our final goodbye’s for now, but not forever. We will be back to see our angels at PCH soon. Ronan will be back and feeling much better:) Cannot wait for that day. Fernanda is going to come to the clinic with me to work on some things. I.LOVE.HER. so much. I swear she could rule the world. Beautiful people everywhere and I never even knew it. Thank you to all of you who are keeping up with Ro and his journey. We are so thankful for the love you send his way. Someday, when this is all over and Ronan is well, we will have a big party and all 264,578 whom are reading this are invited:) Wouldn’t that be amazing?? I am totally going to get Eddie Vedder to throw a Charity Concert for Ronan. Or Tom Petty. Or Neil Young. Or all of them combined. How awesome would that be?  Mark my words. Done and done.
Goodnight to my dear friends, old and new. <3 Goodnight to each and every one of you. Love and blessings to you all!!!!
xoxo

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

Open Your Eyes

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you