The Beast has been Tamed. For today.

Ronan. I’m wiped out. But restless. What’s new. I feel like this most days. But today, I am feeling extra exhausted. I think the day of running in the hot sun, crying, throwing up, trying to write Dr. Kushner a letter, throwing up some more, meeting with Dr. J, and tending to your brothers tonight, has done me in. But here I sit, unable to turn off my brain, worried that if I don’t write to you, that you will be sad. That you will think I don’t miss you, I don’t ache for you every second of the day, that you will think I’m forgetting you. I still feel like this is my way of taking care of you. This is my way of feeding you dinner, playing with you, bathing you, reading to you, tucking you in and kissing you goodnight. This is the way I take care of you now, by writing to you so I can make sure you still feel like a part of our family.

I took your brothers to school today and told them it was Rosh Hashanah. They had no idea what that was, so I explained to them it was the Jewish New Year. They wanted to know all about it. I love their curious little minds. I did my best to explain it, and told them Rosh Hashanah marks the start of a new year in the Hebrew calendar. How much of it is about reflection and striving to be a better person. I love that.

After we talked about this in the car on the way to school, I got them to agree that they would take some time in the next few day to really reflect on our past year. Should be interesting as it was the worst year of our life. I am going to let them answer in whatever way they want, as they should not be afraid to feel the things they are feeling. I can just hear Quinn screaming that this past year was awful because you died. I’ll embrace that and nurture that, but he is also going to have to come up with something a little more peaceful and positive. We need to nurture both feelings. They deserve to say how they feel and to take the time to sit back and reflect what we have gone through. I feel like explaining this holiday to them, is a good way to put that out there.

Ro baby. I passed out. Cold, after writing the above. It’s 3:30 a.m. and I’m wide awake. I hate that I struggle with this sleep thing so much. All I want is to sleep for 12 hours. Straight. My body and mind both need it. I have a lot to do tomorrow that requires a lot of my brain power. My brain does not work the way it used to. It is beyond frustrating. I was thinking about this as I left Dr. J tonight. We had a session that lasted over an hour and a half. I left there feeling so tired, that I could hardly function. I had to drive to pick up your brothers and I was asking Dr. J questions in my head like if she ever thought my mind would be the same again. If it would ever go back to being not filled with so many painful and paralyzing memories. I then sat back and wondered if I would ever be that girl again. That fun girl that I used to be. I thought about how it must really suck to be around me, to my friends now, because all that is associated with me, is sadness. A sadness that nobody knows what to do with and a reality check that nobody wants. This is a big part of why I tend to go into hiding. I don’t want my friends to feel sadness when they are around me. I’d rather not burden anyone and go through this alone.

I had a meeting today with my lovelie, Katie, from the Garage. My friend, Carolyn, met us for lunch too. We are working out some very fun details of an event that will be coming up for Ronan. I don’t want to say too much about it yet, except for Save the Date for the evening of Thursday, November 10th. We are putting something amazing together and it will be in Old Town Scottsdale. I am hoping to finalize the details by this Saturday Morning and will announce them this weekend, so stay tuned. It is going to be a night full of all things Rockstar:)

After I left Katie, I came home and camped out in your room for a while. I threw down a blanket, sat with your Urn and GiGi. I tried to hash out my Dr. Kushner letter. You know it takes a lot for me to be at a loss for words, Ro. I could not find the words to write to him today. I was struggling with being the wild animal mama, who just lost her son, as well the composed mama who wants this letter to make sense because I want him to read it. I was trying my best to be the composed yet emotional mama. Those two things are hard to navigate together. I did a lot of writing, then stopping, walking around, throwing up, writing again, crying, throwing up. I had no idea I was going to have such a physical reaction to this letter writing. I also had to finish up the timeline that Dr. J wanted. I started it from the time you were diagnosed to the date that you took your last breath. I had to look up dates from the writings of this blog which was bloody horrific as well. I told you I don’t reread this thing. The bits and pieces I had to go back and read, to fill out dates of things, was absolute torture. It was more painful than I thought it would be. I avoided as much as I could, but even catching glimpses of some of my words was enough to make me want to find that big hole in our backyard and bury myself in it for the rest of my life.

I finished the timeline, but I did not even come close to finishing the Dr. Kushner letter. I ran out of the house, feeling exhausted and beat down. I don’t know how I am going to win this battle without you, Ronan. I have been feeling so overwhelmed with so many things. I got to Dr. J’s office and I felt like I was going to pass out. I slumped down on her couch, and let the weight of my body sink into the heavy world around me. I easily could have slipped into a coma. I gave her your timeline. We went over all of it for over 2 hours. I felt like I was being transformed back into each date. I could hardly find the words to articulate my thoughts. She was gentle with me. She helped me get through it. I don’t know where she came from Ronan, but that woman is unlike anyone on this earth. I brought her a little gift, from you. A shirt that I had Samya make. The “All Good Things Are Wild And Free,” shirt. It was meant for her. It was meant for you. It was meant for me. She loved it. She knows the deeper, spiritual meaning behind this shirt. It’s going to become my personal freaking mantra.

Ro baby. I started this post days ago. Days. Before my little freak out post last night. I know I freaked out. I have to every once in a while. I am such a calm person by nature, Ronan. Feeling anger like I was last night had to be unleashed. The beast, had to be tamed. Your poor Daddy Woo. My Superman, amazing husband. The BEST man on the planet. I know I don’t write about your Daddy a lot on here. For a few reasons. I have to keep some things, sacred. What we are going through, and how we are going through this is very different. But we are going through it, together. He is my silent partner in crime. The one I can always count on, no matter what. The one I love and I will love forever. The one I sit back and watch, as he coaches your brothers basketball game and I think to myself, you are so lucky to have him. I know this. As much as I blab about checking out, leaving everyone and everything behind…. that is my pain talking. You know I would never do such a thing. Your daddy is being supportive of me and my craziness. That makes me love him even more. He knows I’m not going anywhere, but if I up and said I wanted to go away, to Thailand like I often joke about, he would say o.k. How many people can say they are married to a man like that? Not many, I’m sure. The times that I do mentally check out, he knows I’m not going far. He knows he is my home. He knows it will always stay this way. He is not worried because he knows me as well as he knows himself. He knows us. You know us, Ro. You know there is nothing to really worry about. I’m human. I’m hurting. There is no easy way to go through something like this. I am simply just doing it. One day at a time. Hour by hour. Minute by minute. Cuss word after cuss word. Uncensored. Raw. Real. Because that’s the path I’ve chosen and I’m not looking back at the things I say or the words I write. Because at the time, it was exactly what I was feeling and needing to say. No regrets.

So, baby boy. What else have I been up to? Trying to find a balance in this new life. Trying to figure out how to handle all these fuels in the fire. But wanting to make sure I am grieving for you properly as well. Dr. J asked how often I sit back and really think about all that has happened. How often do I just sit with this? It is always with me. But to think about all the millions of details, in depth, is so painful. I sit with these thoughts of you, when I cannot control them. I give into everything I am feeling, when I am with Dr. Joanne. I am also very good at giving myself a million things to do, to distract me. I am being so productive. I sometimes think too productive. But what is my other option? To stay in bed all day and do nothing? I think allowing myself to do this once in a while is o.k. But for the most part, I need to stay busy with my days. I need to sit here and figure out how I am going to make your little face, change the world. That is such a big job, Ro. But if anyone can do it, it’s you. It’s me. It’s us and these amazing people we have, wanting to help, that can get this done. Because if nothing comes from this, then what? You would be so pissed at me. I’m not going to fail you. I promise.

Liam and Quinn had basketball practice tonight. Your Daddy was late due to being stuck in traffic, so I had to fill in and be the pretend coach. It was cute. It was fun. Your brothers loved having me fill in. Your Daddy came to the rescue soon, thankfully, because I didn’t have a clue as to what I was doing. We had dinner afterwords, at Beckett’s Table. Liam started not feeling well as soon as we sat down. I watched him as he put his little head on the table and said he had a really bad headache. He could hardly contain himself the pain was so intense. That’s never happened to him before. I took him home, while your Daddy and Quinn finished up dinner. I gave him Tylenol. He threw up everywhere from the pounding of his head. I ran him a bath and cleaned him up. The whole time, I was thinking to myself that this was the first time, that I have taken care of someone else, besides you, since you were diagnosed.  This was the first time, that I was taking care of someone who didn’t have Cancer. I felt so lucky and blessed to be taking care of Liam. I felt so lucky, to have him there, being sick because of a headache and not Cancer. I was thankful to put him in the bath, to wash his hair, to give him 7-Up and to tuck him into my bed. I felt thankful to be his mama. I wished you would have been there, helping me, so badly.

My mind instantly went to my bad place as I prayed that this is just a headache and not Brain Cancer. I got physically sick to my stomach because now I know too much reality. My mind works differently and it took everything I had not to throw him in the car and take him to PCH for a MRI or CT scan. He has been asleep for a while now. I will wake him soon, to check on him. I will watch him for the next few days. I will ask you to take care of him and to please make sure it is only exhaustion/a headache. They say lighting doesn’t strike twice, right? So they say. I’m an instant skeptic.

I have to tell you one more thing. I found something the other day on the site that I use to post a lot of my sayings and pictures. To say it knocked the wind out of me, doesn’t even touch how it made me feel. I have to post it. I have to share it because it is just too real. I found a picture of a little girl. It was under the “Twilight,” category because I guess she is supposed to be the spawn of Edward and Bella. She looks exactly like you. I even showed your brothers and they both were in awe. I swear, if you had been a girl, this is what you would have looked like. It looks so much like you, that I can’t stop thinking about it. Or maybe I am just delusional. That could very well be a possibility. Here is the pic.

G’nite my sweet baby. I miss you. I love you. I hope you are safe. Sweet dreams.

Do not believe in anything simply because you have heard it.
Do not believe in anything simply because it is spoken and rumored by many.
Do not believe in anything simply because it is found written in your religious books.
Do not believe in anything merely on the authority of your teachers and elders.
Do not believe in traditions because they have been handed down for many generations.
But after observation and analysis, when you find that anything agrees with reason and is conducive to the good and benefit of one and all, then accept it and live up to it.

-Buddha-

Who’s reading this and NOT signing it?? We can do better than this, peeps. 5K signature should be a walk in the park.

 

 

I expect a lot from you all. I put a lot out there as far as my writing. I know thousands of you, read this. If you are going to continue to read my blog, please sign this. If you are reading this, and not taking the two minutes to sign it….. Ummmmm…. what’s wrong with you? You are missing the point of EVERYTHING. Sign this damn petition, please.  I am just going to be really sad and let down if we don’t get 5 thousand signatures.

Please do this for me, for Ronan. Just sign take the 2 minutes so sign this thing. My friend, Olivia, worked hard to put this out there because she is going to work her ass off with me to make a difference. Because she gets it because she has a HEART. And two beautiful, healthy kids. She is not a dumb-ass who is just going to go on with her life. She is a fighter because she gets that nobody’s child is immune to this.

To all of you who have signed this. Thank you. So very much. I know Ronan is watching over all of you. He knows the goodness that is coming out of you hearts. He knows you are going to help make a change. He believes in you and the power of creating an ARMY of support.

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw

Hi. Sorry. I’m fine. Just sad. No need to freak out.

Because this made me laugh. Total amazeballs.

 

 

 

 

Hi. Sorry nobody needs to worry about the crazy post last night. I’m fine. The sadness of Ronan just consumes me sometimes and it gets worse during times that I cannot sleep and all I can do is walk around the house and cry. I am fine. Was just venting. I just miss him and my heart is broken in million pieces.

I love my family. I am thankful to have them. I will not be letting anyone down. I know what my job/purpose is. I’m not a selfish person. I would never leave my family. I am a giver. I will stay here, and give them everything I have until I am 100 years old. I will take care of my boys, because it is what I do best and they deserve the best of everything. But you all have to understand….. I have not had any time, to truly grieve about Ronan. I cannot heal without doing this because of the responsibilities that consume my life. It hurts not to be able to fully let go and give in to my pain where all I want to do is cry/scream/vent for days. Instead, I have to put on this face of happiness, love, and support for everyone around me as I cannot expose my babies to what I am truly feeling. For them to know my true pain, is not something they deserve to see. I struggle with this because my body/soul/ and mind, needs a break from my days of pouring all the love I have into them 24/7. I don’t know how to balance any of this. So I push myself to overcompensate. I laugh with them, I nurture them, I play with them, I love them all day long, I tell them over and over how much they mean to me, I tell them how proud I am of them, I smile for them, I play football with them, I cheer the loudest at their basketball games….. This leaves little time for me to truly feel the way I am feeling because I have to remember that those 2 little boys do not deserve to see their mommy hurting the way I am. So when I need to feel what I feel, I write. I forget that I am writing to all of you, and you worry. I expect that you all know me so well now, that you know when I just need to be sad/scream/vent and I expect you to understand that for as much as my words hurt… I will be o.k. Because you know how much I love my boys and my husband. You know I would never leave them here to get through this without me. I am strong. I am their rock and I am thankful that they need me so much as I don’t know how I would function without them depending on me so much.

Sorry to have freaked you out but I had some things I needed to scream about last night. No need to text my Woo. I was just being honest. Maybe that was not the best idea to put it out there, but I did. I write what I feel and last night, after not being able to sleep and crying for hours, that is what it was.

I’m not apologize for being too real at times. I will not be killing myself, ever,  but sometimes the pain is overwhelming. For all of you that TRULY know me, I trust that you know I will be o.k. I am thankful that you know me, trust me, and know that this is just part of the process. I’m not going to quiet my voice, I’m not going to stop being true to what I need to feel, write, etc….. Maybe people will start listening and stop taking everything for granted in their lives, because of me and Ro. Maybe people will actually start to make a difference in this world because of Ronan’s beautiful face and my raw and real words. Maybe Childhood Cancer will finally get the attention it deserves. Maybe some Billionaire will decided to throw a ton of money into research so someday, Neuroblastoma will become as curable as Childhood Leukemia.

And P.S. I had to apologize…. not because I feel like I owe anybody reading this anything, but because my husband was getting a mass of texts in regards to my post last night. So, I’m sorry to him. AND HIM ONLY.  For making him worry. I’m not sorry for my honesty. I will never be sorry for that. I will never apologize for writing what I feel. Writing what most people would not. I’m not scared of this world. I’m not scared to put this out there. The truth will set you free. I’m not going to live my life, hiding from what I feel, and not sharing it with the world. Everyone should know what this pain feels like. I know you will appreciate your life more because of this. You are all worth it. Your kids are all worth it.

Ronan was my everything.

Love you all. Sorry for scaring you. But I told you I was going to be honest.

xoxoxoxoxo

Fuck this, Fuck the opossum that made news worthy headlines and Fuck Kim Kardashion and her tears over her lost 70K Diamond Earring.

Ronan. I cannot even believe this picture below is real. Were you really mine? How could something so beautiful, like you, have been real? And now you are gone? I don’t understand any of this. This picture makes me want to curl up in a ball and die. I don’t want to fight anymore. I just want to be with you. Nothing else matters. I’m tired of fighting. I’m tired of being so sad. I’m tired of this pain. I’m tired of pretending that I have o.k. days, because it is all a lie. There has never been a day that has been o.k. since you left. The days are empty. Black. Sad. Lonely. Exhausting. Boring. Pointless. Bleak. What is the point? Nothing makes me happy. Nothing is worth my happiness anymore. I killed you? I didn’t do enough. I should have taken you to Sloan or Chop from the beginning. Would you still be here, fighting with me? Because it was just you and me, against the world and guess what? I failed you. I let you down. I didn’t protect you like I promised I would. I didn’t make you better. I didn’t tell you enough before you died. Did you know you were dying those last few days? Those last few days that you stopped being able to communicate with me. The last few days when you told me to stop giving you sleepy medicine. Did you think I was killing you by keeping you so sedated? What was going though your little mind? That your mommy was putting you to sleep. Did you think you would wake back up, like you always did, or did you know that your life was ending? I know I laid with you and whispered those words to you….”Come on baby, it’s time to go away. Let’s get out of this place. Come with me.” Did you think I was coming with you but I lied and now you are all alone? Are you mad at me for not being with you. For not taking care of you anymore? Are you waiting for me to join you so we can be together again like I promised? How am I expected to stay here? Are you waiting for me to come and take care of you? It’s selfish of me to go on living without you. I don’t want to. I know I’m supposed to continue to fight for you and all these other kids, but what if you really don’t want me to? What if you just want me to be with you? Will you forgive me for staying here? Will you forgive me for trying to go on with this awful life that I want nothing to do with? Will you forgive me for the smile I smile every once in a while? Do you know why I have to stay, as much as I don’t want to? You know it is for your brothers, right? Because I know how much you loved them and I cannot ruin their lives by leaving them. I cannot destroy your Daddy by leaving him with all of this alone. I cannot break anymore hearts. My heart may never heal Ronan. I know that. I can learn to live with this pain because taking my own life, like I think about everyday, would just be too cruel to the people I love the most. You would not want that. I know you want me to be o.k. But how can I survive this? How am I expected to survive this? Look at yourself, Ronan. You were the essence of beauty on the inside and out. You were the most perfect thing, I had ever created. What lesson am I supposed to learn by having you taken away? I knew how lucky I was to have you. I wrote about you all the time. How waking up to you every morning, was like waking up to Christmas everyday. I don’t know what to do without you. Everybody wants something. I don’t want to play the good mommy/wife role anymore. I want to go away. I want to take my time to truly give into the pain I feel from losing you everyday. Alone. I want time to grieve for you. I don’t want to be so busy with 50 things so I don’t have to sit and really absorb how bad this hurts. I want to feel this, as deeply as possible so I can connect with you again. I can’t feel you around me, because I am so caught up in fighting this fight and I think I may have taken all of this on too soon. No matter how badly I push myself to physically hurt, I can’t. My entire body hurts 24/7 from you being gone. And where are you? I am certain, you are not with GOD. I don’t want you to be with GOD. I want you to be with me because I am the only one who loved you enough to take care of you in the way that I did. Nobody loved you more than I did, Ronan. That is a fact. People can say that they loved you so much…. but it doesn’t hold a candle to the way I loved you and you loved me. You know the look you gave me, after you were first placed in my arms after being born. I saw the way your eyes sparkled only at me and the way your little mouth curled up into a smile, minutes after being born. We had an instant secret. As if you had been waiting for me for such a very long time and I for you. It was our secret club that nobody else knew about.

I can’t stop thinking about your last few hours of your life. It consumes me. I curled up beside you. You were becoming so cold. I was so peaceful and looking back, I don’t know why. How could I have been so peaceful, watching you die? How did I bathe you and redress you after you died. I scrubbed you little body, while your lips turned blue and your body stiffened. I dressed you in your favorite pajamas and Star Wars shirt while remaining so calm. How could your heart, just stopped beating, just like that? So simply. So easily?

What did you see when you died? Did you see my face? Did you feel me kissing your lips, fingers, and toes before you passed away? Did you know how much I loved you? Do you know how I would trade my life in a heartbeat for yours? Do you know how cruel it is that I am left behind and you are gone? I don’t care what anybody says. And if another person tries to compare losing you to losing their 90-year-old grandmother, I am going to fucking lose it. Shut the fuck up. A 90-year-old grandparent should die. Not a 3-year-old baby. A parent should not outlive their child. Ever.

My life will never be the same without you. And I don’t want it to be. I will continue on until I can take no more. How could any parent, with a child as beautiful as you, want to go on? Call me selfish, I don’t care. I have every right to be. You are my baby. My perfect baby. And now I have to sit back and live this bullshit of a life surround by ignorant people who don’t care about anything of importance. I have to go on and turn on the news to see that the story of the day is that some Goddamn Opossum died or that a man got his leg bitten off by a shark because he made a choice to swim in shark infested waters when he was warned not to. It makes me sick to turn on the T.V. and see those stupid Kardashion sisters and watch as Kim goes into hysteria over losing a 70,ooo dollar diamond earring. Fuck you, Kim Kardashion. Try fighting for you babies life, watching him die. Go take your 70,000 dollar diamond earring and shove it up your bleached asshole. But this is what our world is consumed with and I have to control my goddamn anger every day because I know what real tears mean. But nobody cares. I guarantee, if Kim Kardashion saw your picture and knew what the fuck it meant to feel real pain, she would feel like such an asshole. Or maybe not. She probably completly lacks any self awareness. I hope she is happy, knowing that the bullshit wedding of her dreams, could have helped to save so many babies by the power of her stupid voice that America is obsessed with. Fuck the bullshit of the priorities of this society.

Ronan. I’m pissed tonight. Because of that picture below and because that beautiful body of yours in now in an Urn on my dresser. I now longer get to kiss you lips, but you cold Urn instead. None of this was your fault but you suffered and lost your life anyway. I’m sorry I couldn’t save you. I’m sorry if you were scared. I’m sorry if I let you down. I hope you don’t think I killed you. I hope you don’t think I didn’t do enough to save you. I hope you forgive me. I will NEVER forgive myself. If I would have made the right choices you would still be here. And FUCK all the Medical World for making parents like us, navigate our way though this by ourselves. And FUCK THEM for saying over and over to us that “No matter what choice you make, it will be the right one.” FUCKING LIARS. If that were true, my son would still be here. You have a lot of making up to do, Doctors/Scientists/Researchers of the world. Please do me a favor and get your shit together. No mother should have to bathe and redress her dead child’s body. No mother should have to wear her child’s ashes around her neck. FUCK YOU FOR FAILING US.