I’m having a white party tomorrow. Do you think P Diddy would want to come?

Ronan. Do you know how I feel tonight? Hollow. Empty. I swear, it’s just one thing after another. I just had a Mother’s Day that no mother would ever want. All after your death day, your birthday/the day you were cremated (on your fucking birthday), Mother’s Day, and now tomorrow, is the day we had your fucking services, last year. May is a sick fucking joke. Next year, I am going to Iceland for May and living in a fucking igloo and ignoring May, all together. I came home from our trip, numb. I am totally numb again. How can I not be? I’m numb without the help of any anti-depressants. The one’s that everyone wanted to numb me with and still want to numb me with. I’m still here screaming that I don’t want to be numb. I will feel this, the way I am supposed to feel this and not by taking medications to help me not feel this. I want to feel this. I deserve to feel this pain. I am strong enough to handle it, no matter how much it hurts. I think my body is having a natural numbness physical reaction, all on it’s own. Because these dates, right after another, are just too much.

Mother’s Day was banned. Well, at least it was in my head. I let Liam and Quinn still think it was happening, because I don’t want to ruin everything for them. I took Mother’s Day and turned it into a day, all about them. I had a Liam and Quinn day and didn’t make a peep. I don’t think I even cried. See, I told you I was numb. We went to a Red Sox game, which they LOVED. We went and had a BBQ dinner at our friends’ house and they loved that just as much. We let our 4 kids run around and play with each other, but it still should have been 6. We sat with our friends into the night, talking normal talk and cancer talk. That’s the way it will always be. But it was easier with these friends, to be around them on Mother’s Day. I took comfort in all of our sadness on this “Happy Day,” of the year. I sat and thought a lot about your Fairy RoMo. I texted her it was indeed not Mother’s Day but Fairy RoMo day instead! I told her how you would have went craaaaazy over her Goldilocks hair and I know she would have loved you like her own. I am changing Mother’s Day to Fairy RoMo day. Because the love/kindness/support/and heart of your Fairy RoMo should be celebrated on this day. So it was, for her. I let my thoughts soften a bit while thinking about all the beauty that just exudes out of her, all the time. Like there is just sparkly glitter falling from the sky, when she is near. That’s how I feel anyway. It makes me feel peaceful, happy and inspired. There is that lucky world again, Ro. I am so lucky, to have her in our lives. Thanks for bringing us to each other. Another one of your little gifts, I know.

We made it home now and all I want to is run screaming back to Maine. Preferably Cape Elizabeth where I totally left my broken heart. I could see my broken heart mending there, quite well. You know what I felt while we were there, besides sad? Peaceful, calm, quiet, relaxed… I felt the pieces of me, that I miss so much. Your brothers felt it too. For such an awful reason to go away, Ro baby, it was the best place we could have possibly went. Maine and Cape Cod. Your brothers were so in their element there. They were so happy and carefree. They were so sweet and we spent so much time, outdoors playing in the beach, on rocks, on logs, in the water, in the woods, getting lost with each other and slipping into their childhood that they should know. The only childhood they should know where their baby brother, does not get cancer and die. It should have been the 5 of us there, Ronan. My heart is ripped to shreds that it is not and never will be again. But your brothers, they are happy. I guess that means your daddy and I are doing a good job, despite all of this. I don’t know how, but we just keep skipping along, not missing a beat because now, only their happiness is what matters to me. Mine can wait. I can put mine on hold, forever. Liam and Quinn will not be robbed of anymore happiness. They are too good of boys to have anymore hurt come a long. So, Ro… I still cry in front of them. But not as often. I laugh more with them and hide all the guilt that washes over me when I do. Guilt that they do not need to see or hear about. Adult guilt that I hope they never have to know about, in this way. Your dead child guilt where everything you do feels wrong… even telling another little boy at a hospital how brave he is while you are in visiting him. FUCK. Did I really just tell him he was brave. OH MY GOD. I only used to tell Ronan that. I just betrayed, Ronan. Fuck. I have to leave. I do. Tears pouring. Ronan. I’m sorry. You were the bravest little boy, I’ve ever known. I’m sorry if that hurt your feelings. I tell you thinks like this all the time because the guilt never goes away. It’s heavy to carry but that’s just the way it is. Once your child dies, you don’t stop taking care of them. It just continues on in a different form. I still have 3 kids to take care of. Why else would I be doing your Foundation, Ro? My number one reason is it is my way of still being your mom, still taking care of you, and still doing a really good job at it. A job that is going to be done, so well due to how much I love you and you love me. This is why your foundation will change things. Because our love is powerful enough to do so and because I promised to fight for these kids and families until things start to get better. Like a freaking CURE for Neuroblastoma. Let’s start with that. That is what we are going to do with our passion, drive, energy and love. We are going to help these doctors but we are also going to help these families. No family should feel so alone in this, the way we did. It was wrong, wrong, wrong. I have a big list of things that need to be fixed. I’ve been working on that list with Dr. JoRo. We will get to each and every thing, one by one so that maybe a family will not just feel like another number. They deserve so much more than that.

Tomorrow is May 15th. The day we had your services last year and I remember NOTHING about it. I think I smiled a lot. I think I did the “Thank you for coming.” I think I thought I was floating on air and I probably was. I wore white. Everyone did. So for tomorrow, it only makes sense to wear all white again. I’ll do this, on this day, every year for the rest of my life. I’m having my own White Party and P Diddy is not invited. Unless he wants to donate a fuckton of money to Ronan so we can start to put our master plan into place. The master plan starts soon. I’m running with it because I have to. Because it is a good idea. Because it is so needed. So, P Diddy, you can come to my White Party tomorrow but be prepared to bring your big fat checkbook. I only need about 10 million dollars. My White Party might suck compared to the fancy one’s you throw every year. With all your fancy people, cars, clothes, etc…. My white party is just going to be me and my son’s Urn. We might have a dance party together. He loved to have dance parties. My party will probably involve tears, but they will be the saddest tears you’ve ever seen for the most beautiful little boy who ever lived. They don’t all have to be sad, they could be happy ones too because I think you might come to the conclusion that my White Party kicks the shit out of yours just for the cause alone. You know, just trying to save some kids’ lives. Cancer Kids who live right here, in the U.S.A. We’ve got a lot of problems of our own, right here. I wish you celeb types would stop and look around here. You could help save so many of these babies who don’t even know how to fight, but they are the strongest fighters I’ve ever seen in my life. They are the true heroes, warriors, fighters. They deserve to have a strong voice to start stepping up and helping them. They deserve to have a chance at growing up. I don’t want anymore families to go through what we have gone through. What we have lost which is everything. Ronan was EVERYTHING to our entire family, not just me. He was everything to Woody, Liam and Quinn. I don’t want what happened to us, to happen to anyone else which is why people like P Diddy need to start helping. People listen to celebs.They need to start focusing on Childhood Cancer. It is worth fighting for with everything you have. Because what if it were your child? Wouldn’t you want to know, the best of everything was out there and the survival rates had improved?? Of course you would but this takes work, money, research, education, and dedication. All of those things seem so easily accessible when you look at these kids whom you are fighting for. Each and every one of them, are worth it and they need to stop being overlooked.

Yeah. That would be my rant and rave for the night. (shout out to AMBIEN) which I have not taken in weeks, but tonight, coming home to your empty bed about threw me over the edge. I needed a night to peace out. So, tomorrow is an all white day for me. That’s what I’m doing. I also might just take Ro’s Urn out with me everywhere I go. I’m kinda serious about that. I do need to invest in that baby Bjorn. Grocery store, here we come!!!

G’nite Ro baby. I miss you. I love you. I hope you are safe. I’ve come to the conclusion that you were just too perfect and beautiful for this world, so you are someplace so much better… just waiting for me. I’ll see you when it’s my time. I love you, little man.

xoxo

A city where the happy is too loud so let’s go away to the cold beach

Ronan. What is today? Sunday I think. The days are lost for me. The day you left me is almost here. May 9th. Your day of death. Not the day you “flew away to the heavens above,” not the day you “went to be with Jesus,” not the day you “went to a better place where you are an angel now,” not the day that you became “free,” not the day that “you went home.” I am not about to soften this blow with any of that bullshit. It’s fluff and fluff does not work for me. May 9th. Your day of death. The bloody hell worst day of my life. Period. I would actually like to take May 9th and make it a National holiday. I would like May 9th to be National F U Cancer day. I think that is appropriate since it is the day that cancer stole you. I am not taking your day and turning it into something fucking pretty, happy, light, and filled with angels from above. FUCK THAT SHIT. I am going to take the day that you left me and rename it and make it the name that it deserves. I think I will wear black all day long. I think I will try not to die from the pain of physically feeling, with every cell in my body, that you are not here. I remember our last moments together. They are a part of my soul now. They fill me with things like anger that I never knew existed. They fill me with things like a fire and a drive that I never knew I had. They make me want to take on the world because I know I can change this. I know we can change this. I know the power of our love can take the worst thing possible, and help others. But I am not doing this the nice way. I am not playing by the fluffy rules. There is nothing sweet and fluffy about having to dig your babies ashes out of his urn to place them in a plastic baggie, so you can take him on a trip with you. Anybody that says otherwise, can fuck off. Because it is simply not true. It’s bullshit and something no parent should ever have to experience. Especially not in this day and age when kids die from cancer, due to lack of funding alone. I don’t understand this. I will never understand this. I will never understand why this is acceptable. I will never understand why all of these kids are swept under the rug. I will never understand so I will spend the rest of my life, trying to fix this. This is what I am here to do, Ronan. I am not doing anything else.

I may have had a mini freak out last night in our hotel room. We landed in a big city. A big city is not where we need to be right now. I knew that planning this trip. I can do a city, all alone, and badass, any other month, but not this month. We went to dinner in this big city last night. It was all I could do to stay in the restaurant and not flip the fuck out. There were sooooo many happy people, everywhere. Happy and fancy. All dressed up. All happy and carefree. Nobody in that restaurant, had a dead almost 4-year-old. That I am sure of. “Their happy, is too loud.” I know what that feels like. I feel like that, all the time. It makes me sad and stings my eyes. Please bring him back. Please. I beg over and over in my head. I WILL DO ANYTHING. This never works, but I will continue to try for the rest of my life. I left the restaurant with Liam. We had a little foundation business to attend to. We had to get a picture of my fake training, for Palmer Cash, as they were my sponsor for the day. Thanks Palmer Cash. Everyone needs to check them out. They make the raddest tee shirts out there. Liam happily snapped my pics and laughed at my goofy posing/fake running. You see, I am not only doing this to make some money for your foundation, but I am also doing this to help us get through May. My life kind of depends on it. This was my idea as I knew we were going to need a way to get a laugh and some smiles on this trip. A light-hearted but heavy-hearted way to make some money to get Dr. Mosse’s trial funded, seemed like the way to go. So far, so good. I have had a blast and it is a healthy, good distraction.

We were all tired from our long day of traveling. We fell asleep pretty early. I ended up waking up, and having a mini freak out session/panic attack which caused me to slam two Ambien and send some insane text messages to your Mr. Sparkly Eyes. Well, not insane, but intense. I am always the most intense when I am the saddest/on the verge of jumping out of our 7 story hotel room. It was the Ambien that knocked me into a black coma of oblivion, not the soothing words of everything is going to be alright that I needed to hear. No words last night could have saved me. I know myself well enough to know when I am not capable of handling things on my own. Last night, when I woke up in that hotel room, only to find your daddy and brothers, and you were nowhere to be found.. well, what can I say? Nothing. What do you say to that? How can words comfort that? They can’t. They didn’t. I chose to escape instead. I am not perfect. You know how I hate our little frienemy. But on nights like last night, I don’t have a choice. The 7th floor jumping out of our hotel window, to splatter on the streets below, did not seem like a better option. Ambien won. Again, but not always. Not always is good enough for me, as of now.

I woke up this morning, all bright-eyed and bushy-tailed. No trace of black oblivion coma, existed. Up, showered, packed, Starbucks, hit the road, let’s get outta this big city. We met up with some friends. Good friends. Forever friends because of the unthinkable bond that we share. The one of a dead child, due to cancer. It was good to see them. So good. It actually felt good. It felt like home. I am so glad we are here. Getting out of Phoenix was the right thing to do. We watched their little boys’ Lacrosse game. God, you would have loved that game. It is so a sport you would have kicked ass at. Since you cannot be here, to kick ass at this sport, I now feel like I should do this for you. I am dreaming of a woman’s Lacrosse team as we speak. How awesome would that be? Your brothers want to play as well. The thought of that, put a smile on my face. I told them I would look into it once we returned home from our trip. They are both so excited. I am excited too. They are such good little boys. Almost too good. I need to rough them up a bit. I think Lacrosse is a good start.

After the Lacrosse game, we all went to lunch. I sat back with our friends and watched the way the 4 of our boys became fast friends, laughing and giggling together. 4 boys but there should have been 6. 6 would have been much better. 6 would have been absolutely perfect in this so-called imperfect world that does not exist if you have all of your kids, healthy and living. Healthy and living and there should be nothing to complain about, ever. Not the spilled milk, not the ” I don’t have enough time for myself because my kids keep me too busy,” not the messes made, not the arguments that are had, not the strong-willed child that throws a fit over everything, not the “I am too tired because my “sick,” child kept me up all night.” Please. I would give both of my arms for those problems. I would give my life for those problems. Those are not problems. Those are “you are so fucking lucky.” So shut up, suck it up, and be grateful. Stop making everything so much more complicated than it really is. Because at the end of the day, it’s not complicated at all. If it is, fix it. Are you laying with your child, as he takes his last breaths? If you are not and you are still complaining about this shit I would really like to punch you in the face. I cannot tolerate a life of complaining of nothingness. I don’t tolerate it. Which is why I may have such a big problem with being out in the real world now. Complainers are everywhere. I don’t do well with them.

If good days existed in my life anymore, today would have been one of them. We left our friends and headed off to our new destination. As we drove to our hotel, I spent the majority of the car ride, quite, with tears streaming down my face. Everything in our lives has changed. Even a 45 minute car ride. I hid my tears from everyone, as not to upset your brothers. I was so thankful to get out of the city. A cold, beachy destination seems to be much more fitting. A sleepy little town, where it seems as problems do not exist. I know this is not true. But due to the fucked up things that go on in my head, I have convinced myself that if we had live here, you would not have gotten cancer and died. Case in point, conversation with your daddy in the car.

Me: “I’ll bet nothing bad ever happens here.”

Your daddy: “That is not true. Bad things happen everywhere.”

Me: “Well, I’ll bet kids don’t get cancer and die here. I’ll bet if we would have lived here, Ronan would not have gotten cancer and died. It’s just too perfect.”

Your daddy a.k.a. the voice of reason and also the voice of you are clearly insane: “People get cancer everywhere, living here would not have changed Ronan getting cancer.”

I huffed and puffed. A small part of me thinks that if we had indeed lived in this small little sleepy town, that you would still be here. It’s my pretend world and I can live in it if I want to. I choose to live in it. Most of the time alone. Sometimes not. Either way, I don’t see myself leaving it anytime soon. It is the pieces of pretend that give me a break from our reality.

I chose to see you today. Running on the beach. Diving into the freezing ocean like I know you would have. Carrying your little red sand bucket. Giggling everywhere. Yelling, “Quinny! Mama! Quinn just threw sand at me!” Then throwing the sand back. I would have chased you like the wind today. I would have loved every second of cleaning you off. Throwing you into a warm bath where I would make sure you felt safe, clean, loved and warm. I would have put on your sweet little pajamas and tucked you into bed with me, where you belong. Nowhere else. Certainly not this nowhere that is here now. Certainly not this nowhere of crying myself to sleep because I am so sad I got to do none of those things with you today. I know you want to be here doing them, just as badly. I can feel it. I am sorry. Forever sorry.

I might have to end this now. I think it’s really long and I’m too sad, to continue on. Today was as good of a day, as it could have been. Your brothers happiness is proof of that. There happiness is how I judge good days now. I very rarely know happiness of my own. I’m o.k. with this. As long as I get to see it through them. I love you. I miss you. I hope you are safe. G’night baby doll.

xoxo

If kids can fight cancer, I think I can run a full marathon, without training for it.

Ronan. Headache. Can’t sleep. Usual insomnia. Liam is still not feeling well. He has some nasty little bug that is going around his school. He stayed with your Mimi and Papa today and is staying with them tonight. He’s contagious and I feel like can sometimes use the break from Quinny. I had some things to get done today and had an appt. with Dr. R for your daddy and I, then Quinn had his time with her as well. It was really good for him. She is really good for Quinn. He really clicks with her and she makes it safe for him to talk about you. They worked on a collage about you today. It’s not finished, but they cut out a some pictures from some magazines. Quinn picked out some things that reminded him of you. So far, he has a picture of an alligator, from that time we went to Disneyland and went on the jungle cruise. He found an add for Phoenix Children’s Hospital and had that on there. He also cut out a star and the word, Cancer. FUCK. This is so not fair. This is so not right that your little brother, gets to sit in a therapist’s office, and cut out the word, Cancer, because his little brother, died from it. I know that nothing will make this right, Ronan. But I also know that your brothers need to be talking to someone other than us and I feel like Dr. R, is a really good fit. I have not taken Liam yet because I wanted to get Quinny settled first. He will go as well. I think this can only be a good thing, for the both of them. For all of us.

I hiked today. It was hot. Around 90 but I didn’t really notice. I never do. Nothing is hot enough/hard enough/hurts badly enough. I know what real pain feels like. It does not come in the form of Inferno Hiking. I found the little gift that somebody left for me at the bottom of the trail. I am assuming it was for me. It was at the bottom of my trail, very strategically placed. Sadly, I cannot accept your little gift. Or maybe sadly for you, but not for me. I am fine with saying, gee… thanks but no thanks. I have my own Roligion, to follow. See photos below:

I left you some Ronan bracelets instead. This was the nice version of what I decided to do today. The not so nice version, was not very pretty. I am actually very proud of my self-control. I am actually proud that my anger did not take over. It made me laugh instead. I needed that after coming out of MY church today, drenched in sweat. I felt better after I went to my church and talked to my Ro. I do not need a book to tell me how to do that. Why haven’t people figured that out by now? Why does the Bible/Jesus thing keep getting pushed on me? I do not like when things are shoved down my throat so just stop. I’m never going to get on board with that book of make-believe. That is what it is to ME and if that offends you, then so be it. I am not here to tell people what is real or what is not because the bottom line is, obviously I JUST DO NOT KNOW. All I know is it does not work for me. If it works for you, great! If it works for you, that makes me happy! More power to you! I have my own beliefs and this is enough for me. It is more than enough. I will get through this, with my OWN book, in my OWN church, with my OWN beliefs. I am proud of what they are and honestly, I am still learning, so I am proud of that too. They are changing and I can feel my own spirituality growing. I am o.k. with marching to my own beat. I am sorry if you are not, but that is not something I can control. It is disrespectful to push your religious beliefs on another, especially when they are grieving. An opinion is one thing. I can be respectful of opinions, but pushing is not o.k. It makes me sick to my stomach. So just stop. I will find my own fucking way. Ronan will not let me down. I know this.

Ro baby. Do you know what else happened today? I sat at Dr. R, with your daddy. I was quiet. I had my guard up as I often do in there. I cried a lot. I don’t like to listen to how much we are both hurting. It makes everything 1000 times worse. I don’t like your daddy to hear how much pain I am really in, out loud. It’s much easier for me to keep it to myself. To shut people out. To be totally vulnerable, is so brave. I’m not that brave when it comes to vulnerability. I am a good pushing everyone away. Except for a few people in my life. I have a few people that I don’t push away for some reason. A few is all I really need as of now. I think Dr. R is kind of a loss for what to do with us. Because as I told her, we don’t have normal marital problems. We have one problem and that is a dead child. And how do you fix that? You don’t. You can’t. It is the one problem, that cannot be fixed. As we were getting ready to leave there, we were walking out and she goes, “You should come and run the San Diego Marathon with me, June 3rd.” I just looked at her and said, “I haven’t been running. At all. I haven’t trained in time to run a full marathon.” She then goes, “Well, just do the half, I’m doing the full.” A huge smile fell across my face. Running a marathon, without having trained for it?? “I’m in. I’ll run the marathon with you. Not the half, the full.” She said, “Look what I have to do, to get you to smile.” I left there, smiling alright. I left there and had about 50 different thoughts run through my mind. I ran them all past Rita. I called her and said, “I’m running a full marathon, June 3rd, without training for it. Except I’d like to change the name to, Maya would like to die, so let’s see if running 26.2 miles, will kill her.” She did not like the name of the marathon. We came up with some better one’s instead. We came up with a few really good ones. Like how about, “If kids can fight cancer, I think I can run a marathon, without training for it.” Or Maya’s Marathon of Madness. I kind of really like that one. Rita and I came up with some genius ideas tonight to make this, really, really fun. And maybe raise some money in the process as well to get Dr. Mosse’s trail funded. It’s time to start saving some babes. I can totally do this. I have you to push me and I know you can get me through anything. ANYTHING. So, it’s a done deal. I registered tonight. June 3rd, I am running the full marathon in San Diego. I’m excited. Rita and I are going to hash out our plan of action this weekend. Cancer fighting ninja’s in full effect. BRING. IT. ON.

You’re daddy thinks I’m nuts. So does Rita. She called me a lunatic today. I’d agree with her. I’ll be the first to admit it. But it makes me feel spicy. My craziness, reminds me of you. And why not do this? Why not? I have nothing to lose. Not a thing. I think of you, and all that you went through. I think of you, and how you’ll never get to run a marathon. I will run this for you, because I can. Because I am alive so that simply means, I can. I am alive and I am healthy so why the fuck not?? It’s good enough reason for me, Ronan. I don’t have a reason for lame excuses. I want to run this marathon, so I’m going to. End of story. I said after the NYC marathon, that I’d never run another one due to it being so hard. Well, back then, I did not know what real pain felt like. Now I do which is why I know this marathon is not going to be a big deal. I’ve totally got this. Go big or go fucking home, right?? Right.

This is all for tonight. It’s late. I miss you. I love you. I hope you are safe. G’nite sweet boy. I miss you so much that at times, I don’t think you were real. I’m sorry for everything.

Rita… meet my friend, Mandy Bee. #awkward

 

Ronan. This is what my nights are like. Fall into a light sleep. Into a place where you are in between being awake and asleep, floating in and out of dreams/reality. But the entire time you are kind of sleeping, you have a bad feeling in the pit of your stomach. Like something is really, really wrong. Just as I get to sleep, I am jolted up out of bed. I’m drenched in sweat. Something indeed is not right. But what? Then I remember that you are not here. I get up, slam another Ambien and eventually it knocks me out. When my alarm goes off at 7 a.m. I cannot get out of bed fast enough. You’d think it was if I thought I had you to wake up to. I don’t really ever think this. I think it’s mainly just adrenaline that fills my body and makes me so restless, that waking up to do things feels better than the quietness that fills the dark nights. Do you know what I do at night? I wander around the house and turn our dryer on about 2/3 different times. I don’t care if the clothes are dry. I’ll dry them again, anyway, just to hear the noise. This is not normal. I know this, but I don’t really care.

I busied myself today with just getting normal things done like a normal mom would do. I ran to Trader Joe’s. It still takes my breath away that I am the mom in the grocery store, without the kid in tow. I went into bereaved mission mama you still have 2 kids mode and threw some things in a cart anyway. I did alright. I made it out of the store without abandoning my cart. To me, that is a success. I hiked up the mountain today with Mandy Bee in tow. We were there for a couple of hours. We had a dance party at the top. She definitely has moves like Jagger. In a Canadian radness sort of way. The weather is getting hotter which means less people on the mountain. Your daddy asked if it was an Inferno yet. I told him it was close, but not quite. It has to be over 100 to truly be an inferno day. It’s getting closer. That was yesterday, this is today, Ro. Yesterday was all things madness. I ended the exhausting day, in the ER of PCH with Mandy Bee because her babe is sick. This is how last night went down. Could be the funniest mix up/awkward first meeting of friends for the first time. I had told Rita, earlier in the day, that Liam was not feeling well. I had picked him up from school and he had a little cough. No biggie but he looked beat. I also may have told her I was in my room with the door closed, crying my eyes out. Both things were true. The part that I left out was that Liam was asleep in his bed, therefore it was o.k. that I was having a moment. The the last thing she heard from me for a few hours until she texted me to check in, was that I was not o.k. I’m throwing this next part in and calling it texts from one bereaved mom to another clearly sane but insane mom. It went a little something like this…

 

 

 

 

 

 

 

 

 

 

While I was texting with Rita back and forth, it may have dawned on me for .2 seconds that, hey, this is a little strange… she wants to come down to PCH, to sit in ER, with me, Mandy whom she’s never met, and Mandy’s son. I then thought to myself, what a good friend she is… I may have also thought for .2 seconds that this was totally out of character for Rita to do, but because of my lack of sleep/grief brain/talking to Mandy, those thoughts quickly left my mind. I said to Mandy, “Hey Rita wants to come down here. It that o.k.?” She replied with, “Of course!” Rita ran down to PCH as fast as she could and came flying through the door. I had no idea that anything was off. I was just glad that both of my friends were meeting and Zane was out like a light and resting comfortably. After introductions were made, Rita said something about the going to the vending machine to get candy. “I’ll come with you,” I told her. As soon as we got to the vending machine, Rita looked at me and said, “Um.. I have a confession to make.” “What?!? I asked her all blood-shot eyes/confused. She looked at me with a look of amusement/what the fuck is wrong with you, crazy pants?!! “I totally thought you were here, with Liam. I had no idea it was Mandy and her son here. I thought I was coming to see you and Liam!” “What do you mean?” I squealed. “I sent you a picture of Zane and everything!” She looked at me like and said, “You sent me a picture some boy with brown hair and the back of his head! Awkward! I’ve never even met Mandy, yet here I am, in an ER room with her and her little boy. Not that I wouldn’t come down here for Mandy, but maybe lunch first would have been nice!” We both started dying laughing. “I have to tell Mandy this. She will die.”

We told her. She laughed but is so the kind of person that loves me so much, that she just rolls with whatever shit I throw her way. This includes, “Hey, meet my friend, that you’ve never met before, in the ER while your son is getting breathing treatments. It’s a party now!” It ended up being fine. And provided me with the laughter that I so needed for the day. Yesterday was a really hard day for some reason. I told Rita that I was so sorry. Mandy too for the totally awkward but not awkward mix up because both of them are so accepting of me and my crazy head. I came home hoping to drift to sleep. That did not happen. I sobbed in bed instead. Your daddy just told me he was sorry and how he’ll never understand this. He fell asleep. I did not. I wrestled with sleep for a couple of hours and woke up, ready for another day without you. Liam did not look well this morning. Quinn was so snuggly in his bed, that I did not want to wake him. I let them both sleep. I kept them both home. I was supposed to hike today with a group that all met up and hiked for you. It was put on by a girl named Rachel whom I met at your fashion show. She organized a whole hike for you and ended up raising 400 dollars in a really short amount of time. Can you believe that?! She had balloons, signs, a cute little table set up with your pictures everywhere. She hiked it barefoot, in a purple tutu and everything. I am amazed at all the good people in the world, Ro. Every time I hear of people like this, it is a little reminder to me, to continue on. Thanks to all the lovies who went out today. It meant a lot to me. I thought about you all, all day long.

I’ve had a really rough past 2 days, which I don’t want to say too much about, until I am 100% sure, but it turns out, people are not always who they say they are. In my naïve head, I want to believe that everyone is good and would not take advantage of others, but I am learning a very hard lesson that this is just not true. There are bad people out there. I often forget this but due to this lesson, I am learning that I need to have my guard up a little more often. I just cannot believe there are people out there who would take cancer and use it to their advantage. There are and it’s due to this that I’m going to have to start being a little more protective of our situation. Tonight, I do not have the energy to sit and fly off the handle about this. Maybe one day, but not tonight. I’m too mentally beat to have another thing to be upset about.

I hiked in the dark tonight. I ran down to PCH to check in on Mandy Bee. I was not prepared for how hard things were going to hit me tonight, until I left there. I am usually fine there. Not tonight. I left there, tears steaming down my face. I heard your voice. “I love you, Mama.” “You’re my best friend.” “Come on baby doll!” I had visions of chasing you down the hallway that we used to walk through. I could not get out of there, fast enough tonight. But you know what, Ro? Mandy Bee would walk through fire for me and I would do the same for her. In a heart beat.

I booked some flights today. It was a fuckwad of a mental block. I sat at our kitchen table for 2 hours, and with the help of Mandy Bee and Rita, I picked dates and booked 4 fucking airline tickets. Not 5, but 4. It was horrific. Your daddy said, “Can’t you wait until I get home, to do this?” I responded with an, “No, I cannot. I’ve tried to do this for weeks now. I have to get it done today or else I am going to slit my wrist. I have to just book these, and at least get our airline tickets taken care of. Airline tickets are done. That’s all I could do today in regards to May. It was enough today. It was almost too much but I cannot bear the thought of scrambling so last minute. A plan is good for all of us.

This is all for tonight. I miss you. I love you. I hope you are safe. G’nite baby doll. G’nite little lovies. Thank you to all my badass hikers today. I loved hearing about how so many of you got so dirty and how much you thought of Ro, the entire time. Thank you, so much. Thank you, Rachel. For working so hard and throwing together, such an amazing event. And FUCK CANCER.

xoxo

 

 

 

A barefoot hike and a spicy little dragon

Ronan. Every single morning I wake up, the first thing I do is miss you. I will never be the mama that wakes up with a fresh set of eyes. My eyes are always sad, mostly bloodshot and my heart is always heavy. Every single morning, I have to make a choice to get out of bed. It’s a choice because a lot of days, I do not want to wake up at all. After a very heavily induced Ambien coma sleep last night (yeah, I totally went there), I woke up this morning saying all kinds of shit in my head. You HAVE to get up today. You HAVE to make 2 decisions today. You HAVE to check 2 things off of your list. You have to start making some decisions about Ronan’s death day/birthday that is approaching. I get up. I make my way to your brothers room the same way I do every morning. I walk past your room. My stomach drops that you are not in there. Your bed is neatly made. I go into Liam and Quinn’s bedroom. I open their blinds. “Good morning, boys! Rise and shine!” I turn on their shower. I text back and forth with Rita. We make some plans for tonight, as a family. YAY! I get to see her little dragon! I pack your brothers lunches and drop them off at school. “Bye boys! Have the best day! Try your hardest! Be nice! Be kind! Help others! But don’t take anyone’s crap! I love you!”

I decide to make a run to Target for a couple of things and one of them includes a couple of little trucks for my little dragon friend of mine. I get so excited about seeing him. I love his little raspy voice, the way he says my name over and over, just to say it, and the way I get to hear him call out to Rita, “Mama,” because that is what he calls her. I am a sucker for that mama word. I am a sucker for the way he sometimes talks about himself in 3rd person. I am a sucker for this little dragon friend of mine who makes me want another baby/child so freaking badly. I would actually just like to take him home, but I don’t his two totally amazeballs parents, would be o.k. this. I’ll just continue to take him in the doses I get him in, which totally makes my day.

It’s while browsing through the toy aisle at Target that I of course, walk past the Star Wars toys. I can’t resist. My heart flip-flops back and forth. New guys! New helmet guys that Ronan did not have, but totally would have wanted. I pick them up. I put them back. I almost walk away. I can’t. I turn around and grab the new guys and throw them in my cart. I’m buying them for Ronan. I don’t care if he is not here to play with them. I run home, look at my get two fucking things done list, I sit down and do them. Good job, you. I look around at our house. It’s so freaking clean. Everything is put away. There is not even laundry to do or windows to clean from your little pudgy, dirty hands smearing stuff everywhere. This is FUCKING BULLSHIT. I throw on my workout clothes. Well, since there is no maybe baby, I guess I can go beat myself up a bit. I drive to our mountain.

I listen to Dr. JoRo’s voice in my head telling me, no headphones… just try to be quiet. To be mindful. I run up our mountain. Except instead of taking our usual route when I get to the top, I turn the corner instead. I slip off my shoes and continue up, down, around, and around the unfamiliar trails. It’s hot. Nobody is around at all. My heaven. Inferno hiking season is almost back. My feet don’t really feel any pain. I run for a long time, barefoot. I stop after about an hour and a half of hiking up, up and up. I find a nice spot, throw my things down, sit down on a big, black rock. I close my eyes for a long time and think about you. I snap a picture to send to Rita. She responds back that the cactus I’m sitting in front of, looks like it flipping off cancer. I laugh. It totally does.

I head back down the mountain, keeping my shoes off for half of the way. I stop to put them on and start to cry. A few ideas trickle into my head about what it is, that I would like to ask people to do for your death day. I’ve decided that’s what I’m calling it. Not your passing day (that sounds too sweet) not your anniversary (i hate that too) I guess I could call it your Fuckiversary. That has a nice ring to it as well. You deathday/fucking bullshit Fuckiversary it is. I know a lot of people will want to do something. I’m creating a little list in my head of what it is, I would like to see done. Up until today, I have not been able to even think about it without getting physically ill and drawing a total blank. It was only today, during my hike of numb pain, that ideas started to spin around. I’ll write about them later, not tonight. I’m tired and I want to be able to let this all come about, naturally, and I don’t feel like I’ve gotten it all figured out yet.

My little hike lasted 3 hours. It was nice to be outside, connecting with nature in a physical way. I get in a funk when I don’t do things like that. I always feel close to you and I tend to feel the closest to you, on that little mountain of ours. I left your bracelets all over the same tree below, like I do every single time I am there. I always wonder who finds them. I always wonder if they will google your name and learn about the most beautiful little boy who ever lived. I hope they do.

I went to your favorite restaurant tonight, Chelsea’s Kitchen, with that little Dragon friend of mine, his parents, your daddy and brothers. I felt like you were there with us. Especially as I watched Little Dragon, jump into the water fountain outside of the restaurant with his shoes, socks and pants on. If you were there, you totally would have done it with him and I would have laughed. I laughed and I almost heard your giggles in the distance. I laughed even harder when that Little Dragon, grabbed someone’s shoe that was just sitting near a rock by the patio (seriously who takes their shoes off, at a restaurant?? if you ask me, they were just begging to be thrown into the water by a very curious 4/maybe 5 year old) and threw it in the fountain/pond. Such a little rebel Ronan move. Your brothers thought it was hilarious. Rita, apologized profusely, but secretly /not so secretly to me, thought it was funny. I looked up at the sky and blew you a kiss. It was a great ending to an almost good day.

I love you to the moon and back my very spicy, little monkey boy. I’m so sorry for all of this. I miss you. I love you. I hope you are safe.

xoxo

1)Dying 2)Depression 3)Pregnancy 4) Mental Ward 5) Let’s just go to Mexico!

Ronan. If I am not pregnant, I think I am severely depressed. I told Rita this tonight. I don’t know what it feels like to be depressed, because I never have been. I’ve been traumatized over losing you so badly that I can’t function, but I would not call that depressed. I would call that just a mom, who has had the worst thing that could possibly happen to her, happen. And then you are left, feeling blind, deaf, dumb, alone, abandoned, shocked, scared, numb, tormented, miserable, heartbroken, physically ill, and like you too, would like to die. You are left thinking the pain alone, will kill you. But it does not. So you get up, somehow. I’m not sure how, but you do. I did. I feel like I have been moving on a high-speed train for months now. Doing so much, but it all felt good. Doing good things/being productive is what is saving me. Doing all of this while still respecting this pain. The high speed train has come to a halt. I am so freaking tired. I worry that it is because I have done so much/too much and now your 1 year since you’ve been gone is approaching. Your 5th birthday is shortly after too. I am going to freak out if I am this tired, and it is not due to being pregnant. This is so not like me. I don’t get tired. I run off constant energy and adrenalin. I can do 50 tasks at once, while hiking Camelback, blindfolded, juggling apples behind my back. Not this past week. This is not the flu or step throat or anything like that. This is something more. It’s either I’m really, really sad…. or pregnant. If this is what depression feels like, HOLY FUCK. It is scary. I do not enjoy this. Rita says if I am not pregnant, then we will be doing a lot of night hiking. Good solution, Rita. Seriously.

There are some things in life, that I am asked to do, and I just cannot do them without you. In my old life, I would have said yes in a heartbeat. In this new life I have learned to say no. There are certain situations that I know I can mentally/emotionally not handle. So, I have started to say no to things that I know will be too painful for me to do. Your daddy is so supportive of me and the way I am doing this. He knows when he comes to find me in the shower to ask me if I am ready, and he finds me crying hysterically saying, “Please, I cannot go without Ronan. Don’t make me go without him!” He knows not to make me. He just looks at me, kisses my forehead and tells me it’s alright, that I do not have to go. This is one of the 10 billion reasons that I love him so much. But I would still kill him if it meant I could bring you back. You see, RO… why couldn’t I have just left it at being one of the 10 billion reasons I love him so much? Why did I have to throw that killing him for you thing in there? Because that’s how my mind works. It’s kind of dark and twisted, in a pretty way. At least I think it’s pretty. But I am a sucker for a dark and twisted mind. I think they are the best minds to have.

I wish I had more to say tonight. I honestly don’t think I left the house all weekend. I’m feeling that crummy. I met Rita at Trader Joe’s. We Robombed the place with your little cards. That was the highlight of my weekend. Well, that and snuggling up to your brothers while we watched oh so bad but oh so good, 80’s movies. Ummm… hello, “Licence to Drive.” Top 5 fav 80’s movie of all time. I loved those Cory’s. Quinn cracked up at it. Liam thought it was stupid and actually went into the bedroom with your daddy to watch, “Storage Wars,” or something. He is obsessed with that show. Those brothers of yours… they are so stinking rad. I am so lucky to have them. I was so lucky to have you. I’ll never understand why you had to go. I miss you so much.

I’m sleepy, tired, and sad. I love you to the moon and back. I’m so sorry, Ronan. I hate this for all of us. I hate this most of all, for you. I hate that you are not here, and I don’t get to take care of  you. This destroys me. This is so not how things should have to be. I hope you are safe. Please be safe. I love you to the moon and back. Sweet dreams, baby doll.

xoxo

I’m not dead. I may be dying. Or I may just be…

Ronan. The weekend is almost over. I spent it with Liam, Quinn, and your daddy. Not sure all of what we did. We stayed around the house a lot. We played in your room a lot. We made breakfast together and sat around at the table, without you. I am never going to stop being sad. None of us will. But slowly we seem to be coming back together; as a family. For so long, everything felt like it was so broken, that it was unrepairable. It’s not unrepairable. I can feel things being glued back into place. It’s because of the love from your daddy and your brothers, that we will be repaired. It just takes time. None of us are in a rush. You cannot rush something like this. Do you know what your daddy says to me, every night before we fall asleep? That he loves me. And that he is so sorry. We both will never stop being sorry. This is just one of the little reasons, that I know we are going to be o.k. Because we are both so sorry. But there is no blame, no resentment, no anger towards each other. We are both just really, really, sad.

It rained here today. It made me miss you so much. If you were here, we would have gone puddle jumping or played in our backyard, in the mud. Your brothers went to a birthday party. I hung out at home with your daddy, in our quiet house. Our now too quiet of a house that is so empty without you. Your daddy asked if I wanted to go to a movie. I told him no. I didn’t feel like doing much of anything. I watched the rain from our bedroom, instead. I’ve been tired lately. I’ve slept really well, which is weird to me.

So, this new friend of mine, Margarita, has been spreading around some rumors that I am not all that dangerous! Can you even believe that, Ro? She totally thinks she has me figured out. I knew I had to come up with a way, to prove to her, that I am in fact, really reckless and dangerous. It was about 6:15 tonight when I suddenly, felt the need to get some fresh air. I texted her and said, “I’m going hiking. Are you coming?” She told me no, she would not be coming, that it was too cold and wet outside and she hated the rain. And she might hate hiking, too. Yoga. She likes Yoga. I do not. Well, that’s not entirely true. I used to love Yoga. Until my life turned into total chaos. Now yoga make me angry. It’s too happy/peaceful/calm. All the things that I used to be, but am not anymore. Maybe someday I will go back to it. Dr. JoRo swears by it. I’m just not ready for it. I told Margarita fine, but I was going… and it was not all that wet outside. She tried to put up a fight, but once she knew I was serious, she decided to meet me. It was starting to get dark as we began our death hike. I don’t know why I decided to go hiking, so late tonight but you know how I am… once I get an idea into my head there is no stopping me. We hiked up, it got dark, we turned on the flashlight on my iPhone. Soon the wind started to howl, (as well as an owl) and down came the buckets of rain. “Ummm, don’t think we are making it to the top, we’d better turn around!” I yelled to Rita. We were about half way up. Crap. It was really raining/windy/dark/totally dangerous. Rita yelled to me, “Maya, you may call this dangerous… I just call it stupid.” I started cracking up. “You are so going to hate me, after this!” I said. We made it down the mountain, without breaking our necks or spraining our ankles. We both yelled out, “Fuck you cancer!!!!!!!!!!” at the top of our lungs. I told Rita I wouldn’t have been hiking on a pitch black, rainy, windy night if you were still here. She said she knew. She asked why she was hiking, with me. I said because you were not here. Same answer as mine. She agreed.

That was Sunday, Ro. It’s now, Wednesday. Hi. Hello. I have too much to say. I haven’t been writing, for a few reasons. The main one being, I just don’t know how to say this so I guess I’m just going to fucking say it. I’m either dying of some horrific disease (more than likely, cancer) or I am pregnant. Or I am having a false pregnancy in my head which could very well likely be a possibility too. The placebo effect is very real and a total possibility, but I don’t think it’s that. I think I am dying or pregnant. Or both. But maybe just pregnant. How in the world could this have happened, you might ask?? Well, let’s backtrack way far back, to right before you were diagnosed. I had that little IUD removed out of my body. I remember driving home from the OBGYN and having the conversation with your daddy which was, “I just had my IUD taken out….. so now what?” Your daddy asked if we were done having kids. I vaguely remember saying, ” I don’t think so… do you?” We didn’t decide on anything right then and there. We just left it as an open-ended conversation. And then, a few days later, we heard the words that a parent never wants to hear which was, “You child has stageIVfuckingbullshitwhatthefuckthiscannotberealcancer.” Our lives changed over night. The baby thing obviously went on the back burner. I stopped talking about it. Your daddy started to bring it up, right around Christmas time, when we went to NYC to have your base tumor removed from your abdomen. Your daddy would bring it up, and ask why I wouldn’t talk about it anymore. I mostly just ignored him and told him we could talk about it, once you got better. He pushed a little. I ignored him and he pretty much stopped bringing it up. I talked about it with you only. We talked about having another baby brother or sister. You wanted one so badly. We talked about names and if you wanted it to be a boy or a girl. You wanted a sister. We joked about having more twins. You liked the thought of that. You liked the idea of a little one or ones, to boss around. We talked about it a lot, the two of us. It was our little secret plan that when the time was right, and you were better…. another baby was in the cards. Before the blink of an eye, you my healthy boy who was kicking cancer’s arse…. was not anymore. I swear you were doing so well, and then *BAM!* within weeks you were dead. I still can’t wrap my head around how that happened…

So, Ro…. since you’ve been gone, the baby thing has come up again. Not many people have brought it up. Your daddy has hinted around here and there, and I pretty much refused to talk about it. I only really talk to Dr. JoRo about this baby thing. We’ve been sitting with it, for a while. I divulged my deepest fears, lots of tears, guilt, I’m betraying Ronan, what if this baby dies, or gets cancer, or I don’t love it as much, I’m not worthy of having another baby since Ronan died…. I should not be allowed to feel any happiness or love that a baby could bring into this world, and how will I know, when the time is right??? She told me there would never be a right time. She didn’t argue with any of my worries/feelings/fears. We talked about them instead. We’ve talked about all these things for a good 4 months now, in-depth. She had her baby boy, Josh, after Chey died. She gets it. Sometimes I feel as our lives or so parallel, that it was fate that we met the way we did. Your fate. I believe you were the one behind me finding her. I am so thankful to you for that. We have too much in common for it not to be something more then just a coincidence.

It’s just been recently that I don’t cringe every time somebody touches me or gives me love and affection in a physical way. I’ve been so detached from everything and everyone. Your daddy and brothers included. I’ve told Dr. Jo that I think a baby is going to be the only way our family can learn to be a little happy again. It’s been in the back of my mind, for a long time now, but it’s only recently that I’ve started to come around a bit to start thinking about it more. Your Sparkly has been buzzing in my ear about it for a while now. Sometimes I’ll talk to him in-depth about it or sometimes it hurts so badly that I’ll say something snarky like, “Not having this conversation with you, today. I don’t want to go there now.” I always see the sad look in his eyes, when I refuse to have the baby talk with him. He always gives me the look and the, “Please think about it. You are the best mother. Please do it, before I get too old. It would be so good for you, Woody, and the boys.” I usually just look at the ground and try not to cry. And then he asks my to smile for him and I am too upset so I’ll just tell him, “No. No smiles today. And what are you talking about? You are not old at all. You are so young…” There are a lot of days when I won’t smile when he asks. I hate those days the most.

So, it was last Monday that it kind of clicked for me that, “Ok… maybe it would be o.k. to start trying to have this baby. Trying being the operative word here. Just once. Not that it would actually happen, but more like, let’s get used to this idea that we are not going to not try to not have a baby. I woke up Friday morning with a very familiar feeling. The same one that I had with you. Mother fucker! I thought to myself. I’m fucking pregnant! I’m not making those words up. That’s what I thought in my head. There were no tears of joy. No jumping up and down. It was complete and total shock, along with a lot of cuss words that followed. Wait a minute. I did not mean I wanted to actually get pregnant right this second. I don’t keep track when I ovulate or anything. I was just getting warmed up to this new idea. And HOLY SHIT. OH MY GOD. My boobs. They felt like they were on fire. That’s how I knew within in a week of conceiving you, that I was pregnant. I remember I went to meet Tricia for a run. I looked at her and said, “My boobs really hurt. I think I’m pregnant.” I was. That’s always been my first and biggest indication. It’s too early for a pregnancy test and I may full on be making this up. My body is so out of whack these days, I never know what is going on. But I’m exhausted. Sleeping like a baby. My boobs are still on fire. I have an appetite and I am eating weird shit like this seaweed crap from Trader Joe’s that no less than 2 weeks ago, I was making fun for Dr. JoRo for eating. Guess where I found myself, yesterday?? At Trader Joe’s, scouring the aisles for seaweed. Who am I?? What is going on?? I think I have a pretty good idea.

I’m mildly freaking out. But I cannot fully freak out until I know for sure. I can of course say, I was not ready for this. If I am indeed pregnant, I’ll have 8 and a half months to get used to this idea. If I am not, I will be totally o.k. with that as well. But I may be slightly worried about the power of my mind and it’s ability to trick my entire body into thinking that a baby is on it’s way. That will really freak me out and I may consider going on a long vacation to the middle of nowhere to try to prevent this nervous breakdown that is clearly happening due to your deathday/birthday/fuckingmother’sday that is coming up. That is a whole other post that I just don’t have the energy to write about tonight.

I sat in Dr. JoRo’s office for a couple of hours today. We talked a lot about you and the possibility of another baby. We talked about how a baby will NEVER take away this pain/sadness/grief I feel for you. How this baby, will never lessen this pain. How this baby will never replace you. How I need to prepare myself for the stupid shit that people are going to say like, “OH!!! A new baby! I’m so glad to see you are over the death of your son! I am so glad to see that you are moving on! This is a sign, from God! This is what was meant to happen! God DID have a plan, it included your child dying, so this child could be born! You are all better, etc….etc….etc….”

I get that people mean well, but I would really like to hear none of those things. I will never be over the death of you, Ronan. Never. I will never move on. I will never be better. I am just learning how to live a whole new life and this whole new life will always include the pain of not having you. I am learning how to manage these feelings that I now have. This life is wrong without you. This life is broken. This life will never be the same. But I am learning to manage all of this. Manage is the new key to this life now. I can’t change the pain, but I can make it manageable so it doesn’t destroy me. I won’t let it.

That was today. I’ve been writing and not posting. I needed some time to digest the maybe baby thing. Your daddy asked me what I thought you would say about all of this. I told him I thought you would be happy, but sad that you are not here, to be the big brother that you should have been. You would have been the best big brother ever. I’m sad for that too. I’m sad for another reason that has had me hysterical the past couple of days too. Today, is Sparkly’s birthday. I’m sad you are not here, to sing to him. I remember exactly where we were, last year, due to it being his birthday. We were in NYC. You were getting better, or so we thought. You were upset that we could not see your Sparkly. We took a picture of you with your big, gorgeous smile and bald little head to send to him. We sent him a text with your picture and said, “Happy Birthday, Sparkly! We love and miss you!” You were so excited to send him that beautiful picture of yourself. I wished him the best Happy Birthday I could muster up, without having you here to do it with me. I made sure my voice did not quiver while I was telling him to have a great day. I got a, “Thank you, sweetheart,” in return. I could hear the sadness in his voice though. I hung up the phone and buried myself in the pillows of our bed, and drenched them with my tears. I HATE THIS SO MUCH. You should be here, singing in the phone. I should not be on the phone, using my strongest/bravest/I am o.k. but really I am not/but have the happiest birthday ever voice. Please come back. I hate doing all of these things, without you.

Little man. I have to end this now. It’s a long, long, post. I love you to the moon and back. I miss you so much. I hope you are safe. G’nite baby doll.

xoxo

Apple pies and middle fingers

Ronan. I wonder if I’ll ever have a night where I don’t cry myself to sleep about you. It doesn’t matter if I have the best day possible. I always end it the same way, by crying myself to sleep. Or not sleeping so I just sit and cry and beg for sleep which never comes. It came last night, oddly enough. It’s been 3 nights straight that I have not had to take anything to sleep. I’ve been dreaming really vividly. It’s always the same thing. You are dead. Everybody knows it and is talking about it around me. I never get to see you. Your favorite lovie is always in my dreams…. like Master Yoda. Except this morning I woke up thinking he had died to which sent me into a total panick. I grabbed my phone and sent some crazy text message blabbing about my dream, you know making sure he was still alive. He was. Thank you, Ro.

Today was a pretty good day. Except I have Liam home not feeling well. He is the BEST little sick kid ever. No complaining, no whining, he’s just quiet and content. It felt nice to take care of him. He is so thankful for everything he has. Even without you, Ro. He is so thankful, sweet and kind. He is so happy just to be alive and healthy. You have made him appreciate everything so much more. I don’t know how it is possible to have such kind, well-adjusted brothers after losing you. But they are. It is bittersweet but it gives me one less thing to worry about for now. So I will be thankful for that.

I had a lot of busy work to get done today. I had my friend, Tanya, come over to help me with your new website. For your foundation, not the blog. It’s going to be Romazing. I cannot wait to get it up and running as we are adding a lot of great things to it. I also had one of my lovely little board members over to do some things are our new kick ass intern, Rissy. She’s a student as ASU and is such a doll. I am so excited and grateful to have her help. We need it badly as so many things seem to be happening with your foundation that I can’t keep up. It’s amazing all the really, really good people in the world. They make all the really, really bad people just go away. But you know what the funny thing is? All the haters that come on here, hide behind their computers, and write mean things…. they make me laugh. Like really laugh. Because the things they say are so absurd. It only adds more fuel to my fire, and motivates me in a way that I did not think was possible. In a way that I know that good will prevail over evil. It’s a Rovolution, baby. Because all good things are wild and free.

Here of some examples of why I know things are going to change in the name of childhood cancer and all things good in the word. Because of the thousands of emails I get a day, from people begging to help. Telling me they are so thankful for what they have. That their eyes have been opened up from the ungrateful slumber that they lived in before. Even though they have never been touched by childhood cancer, they don’t care. They are such amazing, kind people that they are not going to sit back, read this story, and do nothing. That is inspiring to me. That moves me. It is one of the biggest reasons that I get out of bed everyday and continue to march forward.

And then there are things like this: A friend. A new friend. A new friend who has been quietly sitting behind the scenes until a few weeks ago when we met up for some dinner and it has been a love affair fueled by endless amounts of chips, salsa, mexican cokes, and all things you. A new friend that sends me an email saying she just got a really insane kick ass job offer and was offered a huge salary, but she is thinking about passing on it. I tell her I’m so excited for her and she tells me that I am missing her point. With a huge salary comes a lot of hours. She says she is going to pass on this huge job offer because she pretty much thinks I am serious about kicking cancers ass and she wants to be able to continue to help me. Because she gets that there is more to life and she fully believes that I am going to makes a lot of shit happen. I told her, do not pass because of me!!! She told me this:

“Because of you. Because of Ronan. Because of kids who need a voice. Because I always fight for the underdog. Because yes, you are fucking inspiring whether you want to be or not.”

Do you want to know what else she told me? That she is afraid I am too kind for this world. I tried to argue and told her to fuck off! That I am not. I am a mean, badass who uses my middle finger 100 times a day, swears constantly while thinking of how I can destroy the world with all of my anger! But that was a lie and she knows it. Truth is, I don’t really swear much in real life and when I do, it’s probably while baking an apple pie while trying to figure out how I can use this anger for good, not evil. Damn it. I wish I could be a little more mean. I guess that is what all this venting is for, on here. Because it is on here that I can get my meanness out. I guess it is better to hash it out on here, then to hash it out in the real world by starting the imaginary bar fights that I think would be so badass. If I were that type of girl. But I’m not and never have been. I’ll just continue to bake my apple fucking pies I guess.

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

I have an idea on how save Liam and Quinn’s childhood. Just bring Ronan back!

Ronan. I had a whole big post written out last night and I don’t know what I did, but poof! It disappeared and I could not recover it. Dang it! It was a good one too. I’m going to write a new little post as it’s early in the morning and I can’t sleep. I’ll tell you about yesterday. About how in this new life, how something as simple as being around certain people, makes me feel closer to you. How being around certain people, make me feel happy and it’s not anything I can explain. Your Fairy RoMother is in town and I got to spend much of the day with her yesterday. I hijacked her and took her to one of your favorite restaurants were we gorged ourselves on chips, salsa, tacos, mexican cokes for a couple of hours while we continued our evil plot to take over the world. Or at least the kids are dying/getting cancer and nobody gives a fuck world. We sat outside, enjoyed the warm breezy weather and to get caught up on all the little life things that have gone on. Your favorite lovie stopped by. I had told him a couple of days prior that Kath was coming into town and if he wanted to meet one of the most amazing souls on the planet, now was his chance. He jumped at the opportunity and stopped by just to meet her. It was so sweet. It could have been one of my top 5 favorite days ever, since losing you just due to the company alone. After we had way too many tacos, chips and salsa, we returned back to our house where your Fairly RoMother had the chance to say hello to your daddy and meet your brothers. I was so happy she was able to meet them and see your daddy. It made for a pretty perfect ending to a pretty perfect day.

I spent the rest of the evening doing what I normally do. I waited for the sun to go down before I slipped out for a run. You should have heard the things going on in my head last night while I was getting ready for my run. “Oh, you can’t go yet…. it’s still a little light outside. It’s still too bright.” What the hell is wrong with me? It’s as if I truly think I am a part of the Cullen Family from the Twilight movie and if I go out into the sun, bad things will happen. Sometimes I truly do feel if I spent too much time outside in this bright world, that I am going to explode. Do you know there is an official phobia of this? Fear of the sun? There is. It’s called Hellenologophobia and I think I have it. I think I have it and I live in Arizona. Lovely. After I returned from my dark run of the night, I spent the rest of the evening with your brothers while your daddy slipped out for a few hours. I cuddled up with those brothers of yours and watched a movie. We all fell asleep in our bed. I fell asleep for about 2 hours, Quinn fell asleep in bed next to me, and Liam was cuddled up in the bed I had made for him on the floor. He likes to sleep in our room a lot now and we are o.k. with this. It’s comforting to your brothers, so sometimes we have big slumber parties in our room. Your brothers love this and I’m going to embrace this for as long as possible because I know it won’t last forever.

So, I knew this was going to happen when I wrote my last little blog post and said something about telling Quinn he was not allowed to complain about stupid shorts, because Ben died and we are not allowed to complain about silly things in life anymore. I knew I was opening Pandora’s box with this little tid bit. It’s amazing, what people just assume due to reading what I write. It’s amazing how people are so quick to judge and put such hurtful things out there with their opinions/advice/words. I got a lot of, “It is not Liam and Quinn’s job to change the world! Stop putting so much pressure on them! Let them be kids! Save them from this evil life you are creating!” I would just like to say this. Dear OUTSIDE READERS WHO JUDGE AND DO NOT TRULY KNOW OUR FAMILY, shut it. It is NOT your place to come in here and judge my parenting skills. My parenting skills are not up for negotiations or up on the chopping block. I am a good mom. Despite how harsh the words I write on here sometimes seem to be, it is only because I am THAT hard on myself. I am a good mom. Woody is the BEST dad. And Liam and Quinn are the most amazing little boys, even after going through something like this. Do we live our life differently from most families? I have no clue, because I don’t sit around comparing ourselves to others. I know how we do things, how we have always done things, and it is not much different now, then before losing Ronan. We have always been very open about everything that is going on. We don’t hide things. We expect a lot from Liam and Quinn, while letting them be kids. They have always been aware of the sadness that exists in the world. They have always been aware of the pain that exists. I think I’ve said this before, but I had to stop watching the nightly news in front of Quinn at the age of 2 and a half because he would become so concerned with what was going on, why people would hurt others, and he would always want to know how he could fix them. I don’t know if it is a nature or nurture thing with Liam and Quinn, but they are both two of the most compassionate/wise souls I have ever known. Ronan was this way too. I don’t know why or how, but I am sure the way we live our lives has a lot to do with it too. By being super open, honest, loving and kind. So, sending them off to school with “Ben died so stop complaining,” may seem shocking to some, but it’s not to us. Their baby brother died. With this comes the lesson that EVERY SINGLE DAY is precious. And we are not going to waste it by complaining by silly things that just do not matter, when there are real problems in the world to complain about. It was just me, having a pure, honest moment with my boys. They both know about Ben. We have talked about it in-depth and we do not make death a scary thing that hangs over our heads in our house. We don’t obsess over it. We don’t dwell on it. We are teaching our boys that yes, this awful thing happened, but we are a strong family and Ronan would be so proud of us for continuing to live life by being happy and being a family. I don’t think I’ve ever said I need Liam or Quinn to change the world. That’s what I have Ronan for. I don’t ever think I’ve said that Liam and Quinn will spend the rest of their lives, going on this cancer crusade with me. This is my job, not anyone else’s. I don’t care what they do, as long as they are kind to others and do whatever it is, that THEY CHOOSE to do, they do it with passion and by trying their hardest. I don’t think this is such a bad thing to expect. I do not think my little boys, feel like Ronan is this bigger person, who they live in the shadow of because he is that HOLY and MIGHTY. He was their little brother. He died. We are all sad about that but in no way, shape or form would we hold that over our twins’ heads. Do you know how I send my twins off to school, everyday when I drop them off? I tell them this. “Please try your hardest today. Please help others. Please be kind. But don’t take any crap from anyone. I love you. Have the best day ever.” This is our motto in our family: Be kind but don’t take anyone’s shit. Stand up for yourself but don’t hurt others. Help others when you are in a position to do so. Be strong and brave and try your hardest. Do your best. Make mistakes. Learn from them. Be proud of who you are. It’s pretty simple stuff, really. There is no need for the opinions and advice from outsiders on this subject. I have Woody who is my insane voice of reason. He walks on water and the fact that he told our boys the other night, “Your mom is going to change the world, we are so lucky to have her,” is all the reassurance that I need. Woody believes in me. Liam and Quinn believe in me. They support me. I support them. We support each other. They all bring me back to reality when I am beating myself up which I do a lot of. They remind me that I am doing alright. The proof is in the pudding. Liam and Quinn are excelling at everything they are doing. Grades, school, sports, and just being kids like every 8-year-old should get to be. They just now get to be 8 year olds, who lost their little brother, but it will never define them. It will never be who they are, but it will always be a part of them. So, that’s my rant for the morning. And I think I even did it without saying the fuck word which is just not right. So fucking fuck. Liam and Quinn are just fine. But if you want to “save them,” just bring Ronan back. I mean really, that’s all it would take. If you can’t do that, then shut it. Mind your own business and stop judging me by words that you read. It’s not o.k. to just assume things and put your own experiences on other people’s lives. If I were off shooting heroin, drinking myself into a black hole, then maybe it would be o.k. to say your peace. But I’m not. Not even close. I am at home, every single night with my family. I use this blog as my outlet to say things that I feel and to vent because I hold so much back during the day when I am in mommy/wife/responsiblity world. These are my words and if you don’t like them, that is your problem. Do not try to make it mine.

That’s all for this morning little bug. I miss you and I am trying everyday to figure this new life out. It is sad, scary, dark and not fun. But the glimpses of light that shine through every once in awhile make me smile. They remind me that you would want me to keep going, to keep trying, to keep living. As painful as it is at times, I know I don’t have a choice. I will not waste my life and give up. I live for you. I love you. I miss you. I hope you are safe.

xoxo

A Bed of Fire

Ronan. I swear time stood still today. I knew that reality was going to come crashing down hard after the New York fuckeverythingimabadass high came to a halt. Yeah it did and it hurts. I knew I was in for it when I wrestled with my sleep all last night. I fought the devil aka, Ambien last night and won, but my sleep suffered. I was really trying hard to unwind last night, but of course my mind was racing. I have such a hard time being in our bed where you and I spent so much time while you were sick. I often feel like I am laying in a bed of fire. Just as I was settling down, I realized that I had left your GiGi in my car. FUCK. It was late but all I could think to myself was you have to get up and go and get Ronan’s GiGi. You are such a bad mom if you don’t. He could never sleep without it and now you have to take care of it for him. I got up, threw on my most favorite big, chunky hospital sweater that I used to wear with you, and ran outside to get your blanket. I thought that would help me go to sleep. It didn’t. I came back to bed and tossed and turned. Your daddy woke up and tried to get me to settle down. I usually want to punch him for being able to fall asleep so easily and peacefully. I didn’t want to punch him last night. I was just really sad. I got up and went to check on Liam and Quinn. They were both snuggled up on Quinn’s bottom bunk bed together. I crawled up in the top bunk bed where Liam usually sleeps. It was about 3:30 a.m……. my witching hour around here because that is when you passed away. I fell into somewhat of a sleep and dreamed only dreams of myself, fighting with everyone I love. I woke up to hearing your brothers get up and into the shower. Quinn crawled up to give me a kiss good morning. I got up, felt groggy and knew due to my lack of sleep that it was going to be a really hard day. Hard day was an understatement. A hard day would have been welcomed. I’ll never know what a hard day in the normal world feels like again. Days like today are absolute hell. I tried to be productive. I made of list of random things that I needed to get done. I did most of them and checked them off. Checking things off on a list usually makes me feel better. Not today. But I suffered through this day, solo, ignoring everyone’s phone calls. Less and less people call now and that’s o.k. I wouldn’t pick up anyway. I went to pick up Liam and Quinn from school and as I was waiting, I was staring out the window with tears pouring down my cheeks. I decided to check the comment part of this blog which I try to keep up on, but sometimes I get overwhelmed by reading them. I appreciate them all, so please continue to write them. It’s on days like today, that they really do help. Somebody posted this and it was so beautifully written that I just had to post it on here tonight. Thanks Leslie.

Grief has dropped a bomb in your life. You are shattered, blasted, blown apart and all but nearly destroyed. Amongst the shards, amongst the debris, you live. You don’t know how. You can’t see. You can do nothing but feel the pain that is within you and around you. You don’t understand, you will never understand. You lay down amongst the rubble for you can do nothing else and you cry, like you have never cried in your life before and you think why me, why this, why RO?
And somehow without knowing how you uncurl yourself and brush yet more tears from your face and you walk. You begin to pick up a shard, a broken piece of your life here and a broken piece there. They don’t fit together anymore, they can’t. There is no going back to what once was. And as each tiny fragment begins to shape itself anew, so do you. Your shape is a stranger to you now and to everyone else. Your pieces have become you. They speak of your strength, of your courage and they speak of you, the vulnerable you, the broken you, the loving you and the wonderful you.

Love is never lost, always in your heart and soul, right where Ro is…

I cried harder when I read those words though. It makes me think that there are strangers out there, who kind of get this. Leslie got it today and I was thankful for that. Once I grabbed your brothers from school, we came home and did their homework. It was all I could do to muster up the energy to help them. I retreated to our bedroom and laid down with Quinny who fell asleep before basketball practice. I didn’t sleep with him, but I held him as he slept and I cried. Your daddy came and woke Quinn up as it was time for basketball practice. I stayed home as I swear I was paralyzed with grief today. After everyone got home from basketball practice, Liam was begging to go back out to the Village to play some more basketball so your daddy took him. Quinn stayed home with me. At one point, we were in the kitchen. He looked at me and asked me why my eyes were so red. I just said to him that I had been crying. He asked why. I said, “I just miss Ronan. Why else would I be crying?” He looked sad and told me he loved me. We went into the bedroom and I asked him if it was o.k. if we watched a movie. He said o.k. We put on, “The Help.” So, I’m not a good judge of much things anymore, because everything seems so sad to me and I cry over everything…..but was that movie, really, really, sad??? And also, insanely good??? I think I cried though almost all of it all while I explained to your 8-year-old brother, the cruel ways of the world. Especially the past. But I also explained to him the beauty that can come from fighting hard for something you believe in, no matter how wrong people tell you, you are. He watched the movie with wide eyes and asked questions the entire way though as he was really wanting to understand it. He didn’t understand what the KKK was or why anybody would want to hurt another person over the color of their skin. He soaked up everything about that movie tonight and told me he really liked it. He also told me he thinks Emma Stone is really pretty because she doesn’t look like everyone else and looking different, is pretty. Ummmm….. hello little Casanova. Some girl, is going to be really, really, lucky someday. He is such a wise little soul. Liam is too. So were you. I think it’s something you were all 3 born with…. this deep, soulful spirit. Thinking about this, made me smile through my tears tonight but it didn’t stop them from falling.

I’m just sad. And tired. And sorry. So very sorry. I miss you so much. I hope you are safe. I still can’t believe I couldn’t save you. I still think this is all my fault. I’ll spend the rest of my life trying to fix this but no matter what I do, this will never be better because you are gone and all I want is you back. I love you monkey boy. G’nite. Sweet dreams. I love you so much.

xoxo