You is kind. You is smart. You is important.

Ro baby. I played musical beds last night as I fought off the Ambien sleep. I won. I fell asleep for about 10 minutes in our bed and then woke up, in a panic because I cannot remember the last time I have seen the stuffed animal, Gary, that I bought for you over Christmas. I said to your daddy, “Where is Gary?!” He was too deep in a sleep to wake up to help me so I just let him be. I didn’t find Gary and it’s driving me nuts. I keep pretending you hid him somewhere. Such a silly thing to be upset about but it is important to me. I ended up crawling into Liam’s top bunk bed, where both of your brothers were curled up together. I tried to lay there with them for a while and I was hoping to fall asleep. I didn’t. It was too crowded so I got up and went into your room. I grabbed the big, warm, cozy blanket that you died on (I cannot believe I even have to say those words) and draped it around my body and crawled into your extra cold bed with your Master Yoda’s and sock monkey friends. They kept me warm and I finally fell asleep around 3 a.m. I woke up today, sad like I do everyday but I forced myself to leave the house as I knew staying at home again, for the 3rd day in a row was not going to be good for me. I went to my Starbucks office instead and continued to address the thank you cards that I am working on getting sent out.

I got a pep talk today. One from your favorite lovie that always knows how to cheer me up. A pep talk that was very much needed as it’s always during these pep talks that I am reminded that I am going to be o.k. but sometimes I just need to hear it from your lovie, whom I trust more than anyone. The lovie that is connected to your soul which in turn, always makes me feel close to you. Words of our conversation float through my mind, all jumbled about.
Me: “I’m not going to be o.k. I found his hair. I miss him. I want him back. I’m bitter and the world is too bright.” Tears start to form.
Lovie: “Heyheyhey. Stop. Look at me. You are hurting. You are hurting in the worst way possible. Who told you, you are bitter? Don’t listen to those assholes. I know bitter. Bitter is not something you develop over something like this. Bitter is something a person always has. You don’t have a bitter bone in your body. You are the kindest, most gentle soul that I’ve ever known. Stop listening to other people. You are kind. You are beautiful. You are the beautiful little broken bird whose wings have been clipped and you are trying to fly again. You will fly again, I promise. He was the most amazing kid, wasn’t he? I’ve never met a kid like him before. I’ve never met a mom like you, either. You are such a handful. And fuck cancer.”
I felt like I was in the movie, “The Help,” as that scene kept playing in my head. The one where the woman tells the little girl, “You is good. You is kind. You is important.” Those are the words I kept hearing over and over. After my week of grief hell, those words were exactly what I needed to hear today. They got me through the day. They will get me though this life. They have carried me this far. I can’t even think of where I would be, without them.
My tears stopped. “He was amazing, wasn’t he.” I felt myself smile.

“There’s that smile. And not the bullshit one. You are going to be o.k. I promise.”

Picked up. Dug out of my hole. Again. I’m back standing on both feet for now.
I know you know one of the biggest gifts you have given to me. One of the biggest gifts that I do not think I would be here without. Actually, I’m quite sure I would not be here, if this person did not exist. The one person that can always hold me up, pick me up, drag me by my hair, up off of the ground no matter how heavy my grief may be. The only person I really listen to in this life, besides you. My other greatest teacher in life. I am thankful every second of my life for this gift you’ve left behind. Every second, Ronan.
Your Romom, Tricia, tracked me down. It’s been a long time coming. She begged me to go hiking with her. I told her no at first. I told her she was going to have to drag me out of the house. She didn’t have to drag me. I went the top of Camelback with her. It’s been a long time since we attended church together. I’ve missed it so much. I’ve missed her too. We did a lot of yelling at each other. We did a lot of crying on the way down the mountain. I’m pretty sure the people we were passing were thinking… “What are these girls so upset about? What stupid drama!” If only it had been just stupid girl drama. If only the reason for our sadness/hurt/tears wasn’t because we are both left in this world, without you and neither of us knows what to do or how to be; because everything hurts too much. Lots of things are broken now, Ronan. So many things are broken. But I can see they are slowly being fixed. The one’s who are meant to stay in our lives, will stay. The one’s who love us the most, won’t leave forever. They will always be here. Even when all I do is push away. They are the ones who know me. Who love me. Who believe in me. Who don’t judge me. Who don’t judge how we are “handling,” our situation as if there is even a right way to do this. I know they want to fix me, but also know they have to respect my time and my space. And they also trust me enough to know only I can fix myself. So they just stand back and silently love me. I always know this. It’s called true love. It’s called compassion. And I am so thankful for the gentleness.
At the end of the day, no matter what I write on here, no matter who I tell to fuck off…. all you have to do is look in my eyes to see the pain and love that fills my entire body. How can anyone look me in my eyes, and judge??? I am just a mom. A mom who loved a little boy, more then this entire world. A little boy who I spent 4 years with. A little boy who I spent 8 months with fighting cancer. A little boy who wasn’t supposed to die, but did and now I have to live with that guilt/shame/sadness for the rest of my life. Do you know what that feels like for a mom? No. You can’t possibly. You didn’t have him, the way I did. You didn’t love him, the way I did. Nobody can understand what that is like. Nobody can understand the bond I had with him. Nobody can understand the pain I feel from losing him. You cannot even come close to trying to understand this, no matter how much you love your kids. No matter what losses you have suffered. Why isn’t the fact that I am here, following my heart, and continuing to fight for you, Ro…. for me…. for your brothers…. for our family…. enough? Nobody hurts more then me. Even your daddy knows this. I am sure I have done a thousand things wrong, said the wrong things, made mistakes…. but these are my mistakes to make. I will make them for the rest of my life. At the end of the day, I have to look myself in the mirror and just know that I am doing all that I am capable of doing. I know that this is not the way that most people would choose to deal with this but as I’ve said before….. just because it is not their way…. why do others think they have the right to judge my way? Especially if they’ve never been through this kind of hell. Nobody knows how they would act or what they would do, until you are put into this situation. Judging me is just cruel. It’s so passive aggressive. It’s just plain cold hearted and mean. Please stop. If you don’t like what I’m saying, because it’s too sad…. just stop reading. Because I’m not going to stop writing. I am staying true to myself and if that seems selfish than so be it. All I can do is listen to the little Rovoice in my head and what my heart is telling me to do. I am nothing. I am nothing without Ronan. I am aware of this. I am not even a fucking human being anymore. I don’t know who I am or what I am doing and I am trying to figure this out, day by day. I am learning to live in the moment because the moment is the only thing guaranteed in this life. Nothing more. Nothing less. Hopefully someday, enough.
Things have been o.k. the past couple of days. I gave into the super sad sadness that I was needing to let out during the week. I’ve been doing just o.k. this weekend. Just o.k. is as good as it gets for now. And I’m o.k. with that. I’ve been sleeping better, without the Ambien. I’ve been sleeping in your bed which I have found, brings me comfort. Even though it makes me so sad, it makes me feel close to you too.

I love you so much. I miss you. I hope you are safe. G’nite sweet boy.

xoxo

Snow Falling in Flagstaff

Ronan. Guilt is what I feel at this time, in this moment. For living this life, without you here. For the smiles that I’ve smiled, for the laugher I’ve done, for the love I’ve given to your brothers. Guilt for going on when you know, all I want to do is be with you. I wonder if the reason you insisted on being with me, almost every second of every day of the almost 4 years that I had you, is because you knew you wouldn’t be able to stay with me forever. I wonder if you miss me as much as I miss you. I wonder if you are as sad as I am because we are apart. I think that you are and it kills me that there is nothing that I can do about it. I can’t wipe your tears, hold you close and tell you that everything is going to be alright. I can’t promise you that I’ll never let anything happen to you, because it did. The worst possible thing that could have happened, did. And I will never stop being sorry for that. It is so unfair that the four of us are left here and you are gone. I constantly feel like I have forgotten you somewhere. I am constantly looking over my shoulder for you to come running around the corner. I don’t think I’ll ever stop looking for you.

I have been struggling with my sleep so much. The devil, Ambien has been in and out of my life since you were diagnosed. I try not to take it, but I’ve had a solid 3 weeks where I have taken it almost every night. Dr. Jo told me to try Valerian Root last week. She told me she takes 2 of those and she is out cold. So, I took 4 a few nights ago and nothing. I ended up taking my Ambien instead. I haven’t taken my Ambien for 3 nights in a row now. It has been horrific. The first night I fell asleep in our bed, with your daddy. I was in and out of sleep the entire night. I felt like my body was on fire. I had the most awful nightmares. I was watching myself scream your name, knowing that you were dead, but nobody could hear me or help me. Sounds like my real life. When I take Ambien, it puts me into such a heavy sleep, that I don’t dream at all. When I don’t take it, I toss and turn all night long, only to dream the most awful things. So what’s worse? I don’t know as they both seem bad. I know that I don’t want to rely on something to sleep so I am going to try to continue to tough this out. And if I need a break every once in a while, for now, it is o.k. Dr. Jo is trying to get me to meditate before bed or to try some yoga. It’s worth a shot, right??

We spent the weekend up in Flagstaff. It was another 3 day weekend and staying home just didn’t seem like an option. We tend to go stir crazy without you around. It’s like everyone is trying to overcompensate for the fact that you are not here. We headed up on Saturday and spent a couple of days enjoying the cooler weather and lazy days. Your daddy was actually able to relax. I tried too but it was hard to be up there for the first time, without you. I had a moment where I was walking into the living room and Liam was sitting down at the table on the floor. The top of his head, looked so much like the color of your hair, that I thought it was you. It was like I had the wind knocked out of me when I realized it was not. Your brothers were so kind to each other this weekend. They are such good boys. They didn’t fight at all, which seems so rare these days. I watched them as they played together, took care of each other, and helped out with a lot of the things we asked of them. We all snuggled on the couch and watched some movies, your daddy took them on an Arctic Cat ride, I took a long nap with Quinn, which I never do anymore. I snuggled up to him and let him remind me of you and the way we loved to take our naps together. Your brothers were extra sweet to me this weekend. I think they could tell I was sad about having to be without you, doing our normal family things that we loved to do. It snowed up in Flagstaff last night. I watched the snowflakes fall with tears in my eyes. You would have gone crazy over it and made me take you out in the middle of the night to play in it. I would have without hesitation.

It’s going to take a lot to heal us all. We all have some good ideas, of some things that can help. We are all being very open about our sadness and we talk about you all the time. But we are a different family now as we are all different people. Even your brothers. I keep wanting to write your little brothers. As if I feel that you were older then they are. I guess due to everything you went through and how strong you were about it all. I guess due to the fact that I now feel like you are older than them and you are the one watching out for them and protecting them. And the wisdom that you always had as you were so much wiser than your almost 4 years old of age. I always knew this about you. You truly were a gift to us all.

I have a busy week as I am leaving for New York soon. My solo trip that is much needed. I need some time to go back to our favorite city where I can just be for a little while. Some plans are falling into place which I am loving. I planned this trip without having anything to do but some very nice things are coming about. I am excited for the little adventure we are going to have together as I know you will be with me, the entire time.

Alright little man. I love you so much. I hope you are safe. I miss you so very much.

xoxo

Breaking rules, changing Holidays

Ronan. Hi baby. Another day done. Looking back on todays events, although nothing major happened, it seems like forever ago. If I were to write a handbook on losing a child, because there seems to nothing out there about this subject, one of the things I would write about is how slowly time passes by. How the hours just drag on, and so do the days, months and I am assuming years as well. By the time I die, I’ll bet I’ll feel like I’ve lived hundreds of lives. As of now, I don’t really feel like this is a good thing. I’m just tired. And sad. I think I’m also starting to realize that I don’t think I will truly be happy again. I don’t think I will ever know pure bliss again like I knew before all of this cancer shit. Before the loss of you. My life, at best, will be filled with moments of happiness here and there, but the happy that once existed before all of this will never be again. Maybe this will change as time goes on, but I just don’t see how that is possible.

What did I do today?? No clue. Woke up. Didn’t want to. Texted Liz to see if she wanted to walk down to the Del to grab a coffee. She did. Quinn came with us. We got coffee and some yummy but very bad for you pastries and sat and ate them at a table outside. A girl named Katie came up to me with her little boy to introduce herself and to say how much she thinks of you. It was so sweet. They both were wearing their Rockstar Ronan bracelets. It made me smile and my heart melt all at the same time. Everybody loves you so much. Even strangers whom have never met you. It really is amazing all the love and support that has come of this. I will forever be grateful and humbled.

After our coffee, your daddy wanted me to grab him some bagels in town. Liz headed back and Quinn went with her. As much as I love being with your brother, the time to walk alone was nice. But then something weird happened. Something that I should probably get used to, but it still annoyed me. I was paying for our bagels and I felt like a hole was being burned in the back of my neck. I glanced to the side and there sat a family. A mom, dad, and three older daughters. They were staring with their sad eyes and talking in low voices. The girls had their backs to me, but were turned around in their seats while they all gawked. I don’t know if gawked is the right word here, but I’m using it anyway because that is what if felt like. At first, I thought is was my imagination so I just went on with my business and paid for our things. I could feel them all still staring, so as a natural reaction, I glanced their way to see if it was indeed true, and not just me making things up in my head. It was true. Once they saw me look back again, their eyes fell to the floor and they avoided anymore eye contact with me. I quickly rushed out of the bagel shop after that feeling very sad. I get it. Coronado is a very small place, a mini Phoenix. I know people know about you and just don’t know what to say. I know a lot of people just choose to say not say anything and that’s fine. But just a smile would have been nice. That way, maybe I wouldn’t have felt like a zoo animal on display. I hate the looks of pity. I understand the looks of sadness, but the pity looks only make everything even more painful. The looks of pity followed by awkward silence. I’m not a fan of that at all.

I walked back to the Shores trying not to get too sad about that I didn’t have you following behind me. I pictured you running on the boardwalk, doing something naughty like stepping on all the flowers. I pictured myself chasing after you, laughing, but trying to be stern about teaching you to respect nature. As tears started to form, I saw a woman walking in front of me, carrying a Paul Frank monkey bag. The tears stopped. I smiled instead. Then I got to thinking about life and how what if everything that happens is carefully orchestrated. That woman, that stranger, was put in front of me, in that single moment because I wasn’t supposed to be sad. She was put there to make me smile and think of you in regards to something that reminded me so much of you, in the form of happiness. My head starting spinning then and I took a deep breath and thanked you.

I came back upstairs and did my best to get on with the day. I failed. I sunk into bed and fell asleep for an hour. After kicking my own ass in my head, I got up and agreed to go to the beach with your brothers and daddy. It was warm out there today. We played beach darts, football, and I snapped a bunch of pictures. After a couple of hours, your daddy and brothers headed back up to the condo. I stayed down on the beach to finish my book. I now get to read books about sadness and grief. I am looking for answers that I am never going to find. What I wouldn’t give to have some trashy novel in my hands instead. What I wouldn’t give to be completely consumed in a summer beach read. I finished, “The Other Side of Sadness.” It was actually pretty good and interesting. It talked about surviving grief and how there is no step by step guide, which I am slowly figuring out. It talked a lot about different cultures and how death is perceived differently in each one. If anything, the book was informative in that way. I got a few good things out of it. A mother talked about losing her daughter after 9/11. She said one of the things she worried about most was forgetting the memories of her. After a few years passed by, the author asked her what bereavement felt like, years after losing her.She said, “It’s a bit like a fading light. It grows dim, but it never goes out, never, not completely anyway. I find that enormously ressuring. I used to worry that someday the light would disappear that I would forget, and then I would really have lost Claire. I know, now, that doesn’t happen. It can’t. There is always a little flicker there. It is a bit like the small glowing embares you see after you see a fire dies down. I carry that around with me, that little ember, and if I need to, if I want to have Claire next to me, I blow on it, ever so gently, and it glows bright again.”

I thought this was really beautiful. What a simple, non-complex way to bring peace to your heart. I know your little light will never flicker out, Ro. But it was nice to hear it from someone else, who has lost a child. Which I have also decided, is the worst thing that can ever happen in life. I’ve honestly thought about this for some time now, trying to throw in other losses that could even come close to comparing. There is nothing. Losing a child takes the cake. Losing you is like losing a million cakes all at once. I cried on the beach today at a lot of things said in this book. I took the time to sit, reflect, and watch the oceans waves all while being engulfed in the sound of two little girls building a sandcastle right beside me. Their dad apologized for their loudness. I wanted to say to him, it wasn’t loudness at all, but music to my ears. I watched them play for a while and then was determined to finish my book, which I did. Mr. Sparkly Eyes would have been proud that I actually finished it. I was proud of myself. For something so little, the fact that I am actually able to finish a book now is a big deal. Who cares that it takes me twice as long now. I did it, felt emotions from it, and now I can put it behind me. Check mark, please!

I came back upstairs, showered and got ready to go to dinner. We went to happy hour on the island and sat in the bar with Liam and Quinn. We had a really fun dinner. There seemed to be a lot of laugher, talking, and engaging. We have talked a lot about holidays and what are favorite and worst are and why. We have decided to make up a new holiday to celebrate on Easter. Woody says we should call it Feaster and make it all about food. I agreed as long as we could worship a giant chocolate Easter Bunny and not have to dress up in fancy clothes. Liam wants chocolate covered everything, including bacon and Quinn wants to play games. Sounds like we are on the right track to turning this into a lot of fun. I think I’ve said before that most holidays seem meaningless now. Easter is one of them for us. Down with Easter; Feaster is born. I would like to take it and put your spin on it of course, buddy. We’ll have to come up with some things that you would have wanted to have. I’m imagining huge glass bowls filled with your favorite, Candy Corn. I may have some funny shirts made up to and anyone wants to come is invited. Feaster is the new Easter at our house. We will not be giving thanks to Jesus Christ. Sorry folks. That’s not the way this holiday is going to be celebrated. If you are offended, sorry. If you are cool, come over:) We have decided after losing you, Ro…. that life is too short to do things you really don’t want to do. It’s time to start making up our own fun rules and traditions as a family. The Thompsons march to their own beat and we are going to embrace that now more than ever. You earned that right, you loved to break all the rules, so that is what we are going to do. Some rules really are meant to be broken in life, only to be put back together, much better than they had ever been before.

After dinner, we walked around and the boys got cupcakes for desert. I stayed away from those due to my stomach issues. All of my favorite things, sweets, cupcakes, frosting…. destroy me. It’s as if my body is rejecting them. Oh well. I’ll take rejecting them rather than scarfing them down. At least my pants will still fit:) We came back to the condo, I got dressed for a dreaded run. It was chilly out but I did it anyway. Just 4 miles up and down the beach. I sat down for a while and talked out loud to you. I like to talk out loud to you. I did a lot of talking and crying to you. It felt good to listen to my voice say those words to you tonight, alone on the beach. After our little pow wow, I got my sandy butt up and finished my run. I showered and Quinn had asked to watch, “The Cove,” on my computer. I thought about it and said it was o.k. Why not educate him and his  young mind on how corrupt this world really can be. He’s already had the worst thing possible happen to him, he loves to watch, “Whale Wars,” so let’s do it. I watched it with him and explained this is why I have a hard time going to Sea World and swimming with Dolphins. It is one of the saddest movies ever and those Japanese “Fishermen,” need to be stopped. Watch the movie if you haven’t seen it. You will be so appalled that you will want to help expose what is going on. They are slaughtering those beautiful creatures left and right. It is beyond sicking and maddening. Especially to me now, Ro. After all the time we’ve spent watching the dolphins here, it makes me even more upset. What is wrong with people in this world?? Are they that selfish and greedy?? The slaughter of these poor innocent mammels has got to stop. How am I supposed to take on Childhood Cancer and this Dolphin slaughtering together?? I feel like it is my second calling in life. I felt that way when I first saw this movie. I am totally passionate about it and I think it is a beautiful thing for my boys to learn about. They have already learned about death in a way they should have never known, but now they can take this and turn it into nd learn how we need to respect these beautiful mammals, and how if you are passionate enough about something, that you can change the outcome. Sign me up! I’ll kick cancers ass and the japanese fisherman’s as well!! Bring it on, yo!!!

It’s going to take shit like this to get my ass out of bed in the mornings. I am planning on jumping back into boot camp next week. I need to email Tammy to tell her if I don’t have a reason to get up, I’m just not going to. She needs to be my reason for a while. Until I find a new reason. Although, waking up for her boot camps were always my favorite reasons to get up and exercise in the mornings. I hope she’ll save a spot for me:) Phoenix Adventure Boot Camp is by far, the best one in AZ. Tammy rules!!!!

Do you all see what I’m doing here? I’m slowly planning little things so that I don’t barricade myself in Ronan’s room and never come out. Ro, I can not, not, live for you. God. You would be so mad at me for my sadness and anger these past couple of weeks. You would be so mad at me for laying in bed. I’ve got to get up and do things for you. I don’t have a choice. I’m not willing to go down so easily and just die. Then what? Then everybody loses. I’m going to stay in this fucking fucked up world without you, and try to change some things. You would want this. You would be proud. As much as I want to escape into a non reality world, which means hiding in bed, ignoring everyone, not taking care of your Daddy, your brothers, our house…… I just can’t. I can’t have your brothers remembering me as that mom. They’ve been through enough already. I can do this, Ro. Just promise you’ll always be right by my side. I feel like you are, I really do feel you during the day. Please don’t ever go away, Ro. I already miss you so much.

Alright little buddy. My favorite not spicy monkey boy. I love you to the moon and back. I hope you are safe. I hope it’s a kissing day because I miss your sweet little kisses so much. Sweet dreams.

xoxo

Game over! I lose, you win! Bring back my baby!

Ronan. Hi my baby. I have not written in a few days. I’m sorry. It’s hard for me to write when your daddy is here and your brothers do not go to bed until super late. I’m not sure what we’ve done. The usual, except these past two days have been really hard on me. Struggling with a lot of things I guess. Panicking that we are coming back to Phoenix soon. I don’t know how I’m going to walk into our empty house without you. How I’m going to go back to our life without you. I’ve done a lot of crying. A lot of screaming. A lot of this cannot be my life. But it is. Nothing can change that.

I remember feeling o.k. just a few days ago. I remember laughing with Liz as we decided to rent paddle boards and take them out in the ocean. We somehow managed to get those monstrous beasts in my car. One stuck out the sunroof, the other one out the back-end of my car as we drove though town with my trunk open. We broke just a few traffic violations. Once we got to the beach, we put on our sunscreen and took our Orange and Lime Green Zinc sunscreen on and wrote “Ro,” on one side of our cheek, and a big star on the other. I told Liz that it was our way of taking you with us and you would protect us from Sharks;) Genius idea. We took Liam and Quinn out with us first, somehow managing to get them past the break of the waves. Quinn was on my board with me as I swam us out further into the ocean. I crawled up on the board with him as I listened to him tell me how we were out too far, how he didn’t like it, how he was scared. I validated all of his feelings but also explained to him that he needed to take in a deep breath and just look at nature and the beauty of the ocean. I talked to him about how important these experiences were in life, because if you don’t take chances trying new things, the beauty of things will never be discovered. He listened to me, but didn’t seem to buy much of it. I paddled him back into shore, and he played on the beach while I went back out into the ocean. I fell in love with paddle boarding or Sup boarding as most people call it. It’s a lot harder than it looks and I was told by a friend, that you are supposed to learn how to do it in the Bay first, then move on to the ocean. Oh well. Go big or go home, right? It was a really peaceful experience although I did get a lot of bumps and bruises. I think Liz may have almost broken her foot due to a wipeout from a wave. Auntie Karen is convinced she needs an x-ray. The thought of just watching her live life and doing something new makes me smile though. I have learned the very hard way just how precious life really is and it makes me so sad to know that you will never be out there paddle boarding. It helped to have Liz there. And also, the dozen of dolphins that appeared. Liz kept saying what a great day it was. I couldn’t have agreed more.

Yesterday, I woke up early as I wanted to have a productive day. I know what happens if I don’t get myself tasks to do or something to wake up for as that is exactly what happened today. I got up before anyone else, I ran to Chula Vista to the car wash there. It is the one I used to always take you to. I got the car washed and on the drive home, I started to panic. The pain and memory of being there without you was just too much. I called Tricia and cried to her, screamed to her how I just wanted you back. How scared I am to go on without you. How I don’t want to. I sat in my car after I got off the phone with her and sobbed for 2 hours. I talked to Doriet for a good half an hour. We talked about you and Esther and how hard of the time we are both having. We seem to be in a very similar place. I talked to Mr. Sparkly Eyes. He did the thing he is best at which seems to be calming me down with his stern, yet compassionate words. He ended the conversation by telling me to get my ass out of the car and inside the house. I listened.

Once inside the house, I showered and tried my best to pull it together for the sake of your brothers. I put on my best “I’m dying on the inside, but smiling on the outside,” act. We went to lunch. I ate my half of sandwich. I threw it up. We got in the car and drove to the Del Mar race tracks. Bad idea. We acted like the perfect family. Somebody in line, waiting to bet, commented on how cool it was that we took our boys to bet on some horses. I just smiled. We went outside and watched a couple of races. My head was spinning. It seemed as if everyone around us was smoking. I couldn’t stop obsessing about it. I finally looked at Woody and said to him, “Look at all of these people, smoking. Why are they doing that?” He just shook his head. Everywhere I looked, people were drinking, laughing, all dressed up. Life was going on. How could it be? How can all of those people, just go on like you are not gone? How do they not all know about you?? I made us leave after about 45 minutes. It was all I could take. Once we got back to our condo, I told your daddy and brothers that I needed a little quiet time. I went down to the pool and sat with Auntie Karen for a couple of hours. I sobbed to her about you. I talked to her. She is worried, she is sad, she is hurting, she is missing you. She sat and held my hand and told me how I can get through this, how I will get through this, because I don’t have a choice. I told her I just wanted to go to sleep and never wake up. She talked about how that isn’t what you would want, how that wouldn’t be honoring your life. I told her I knew, but all I want is to be with you. She said that she thinks you are always with me. I still wonder where you are. After my day of crying, I somehow managed to get back upstairs and I put myself in bed. I popped an Ambien at 8:30 p.m. Lights out early for me, which I never do.

Guess what time I got out of bed today? 2:00 p.m. Bad mommy. I couldn’t do it today. I slept and cried and slept and cried. I held on to your blanket. Your daddy tried to pull me out of bed. I told him I hated him. I told him he promised me you wouldn’t die. I told him to bring you back. I said a lot of mean things that I shouldn’t have. I am human. I make mistakes. I am sorry for my words, as I didn’t mean them. It is as if I am turning into this person who is going to let cancer win. I’m spinning out of control into a world that I don’t want to be in, but I don’t know if I have the strength left to fight it. I’ve fought this since the second you got sick. I’m tired. Am I going to have to fight this hard for the rest of my life?? Will I ever feel normal again?? Will there ever come a day that I can just do something so simple and sweet like enjoy the sweet San Diego sun without feeling like a knife has just been ripped through my heart when I see families with their 3 boys, riding bikes around the island??

Today, after your daddy pried me out of bed, I got up and showered. We headed out for a movie. Captain America. I was restless. Quinn didn’t like it. I took Olivia and Quinn to the bathroom in the middle of the movie. We didn’t go back to our seats after that. I couldn’t sit still, I couldn’t concentrate, my mind kept wandering to places it shouldn’t be. The 3 of us walked around Fashion Valley instead. We met your daddy and Liam at P.F. Changs for dinner. We colored a Kitty Cat for Liz and sent her a picture of it. I engaged as best as I could. I played a game of scrabble with Liam on my phone. He beat me. I was happy to let him;)

Once we returned home, I slipped out for a much-needed 8 mile run. I ran at a fast pace…. 8:08 tonight. My whole body hurt but I didn’t care. I don’t care. Whenever the pain sets in I think of you. I think of you and all that poison they put into your little body. I think off all the surgeries, the bone marrow aspirations, the pokes, the prods, all the things that caused you pain. You pushed through it so I will too. I talked to a friend tonight about you. He told me everything I already know but I need to hear it. He told me how it is unacceptable to lay in bed all day, how it is unfair to Liam and Quinn. I know he is right. I will try harder tomorrow. We only have a little time left here. It is important that we make that time special. I don’t want them ending their summer going back to Phoenix with memories of me not getting out of bed. That is so unfair to them. Do you want to hear the saddest thing yet? Quinny, your 8-year-old brother, thinks it’s his job to take care of me. Quinn. I was in bed tonight, reading and he was walking all around, putting things away, asking me if I needed dinner because I didn’t eat. He asked if he could make me a sandwich. He asked if he could bring me a water and then did and opened the bottle for me. He put away my camera that was out of its case. He finally laid down by me with his iPad. He said he wanted to write to you. This is what he wrote:

To Ronan today we went to see a move to see caption america i love you ro from Quinn

He also wrote this:

Good Night ronan I love you from quinn to ronan

As I read it he laid his little head down on my arm. I whispered in his ear that you love him too. 3 seconds later, I felt warms tears dripping on my arm. They were his tears. I grabbed him, held him, told him how sorry I was, how I would do anything to bring you back. I sat and we cried together. I told him how important it is to cry about you, how healthy it is for us because we cannot keep it bottled up inside. I told him how proud I was of him. He soon fell asleep in my arms. The angle of his face tonight from where I was watching him, looked exactly like you Ronan. I see a lot of you in Quinn all of the time. It makes me smile. After Quinn fell asleep, I tried to join him, without my Ambien. FAIL. I slept for maybe an hour, but tossed and turned. I just had to pop one about 20 minutes ago. Here we go, coma induced sleep. It’s not good for me and my dreams are fighting to come out. I have remembered a couple of them. I never get to see you. I’m always talking to people and they are always saying how sorry they are that you are gone. I’m always the mom who lost her son. I can’t be that mom for the rest of my life. I have to make something bigger come out of this so I won’t get overshadowed by that title. Tomorrow will be a better day, right?? It has to be. I’ve got to get out of this bad place that I am in. Like Doriet said to me, we have 2 choices, to either live this life, or not. And if we do decide to stay, then we have to live it to the best we are capable of. Laying in bed all day is just not the answer. So if that won’t work, then what will? That is what I have to figure out little man. I need your help more than ever.

I know I am going to need deep, intensive therapy when we get back. So is your daddy and the boys. I’ve got to deal with this stuff head on or else it is just going to fester and get worse and worse. I am ready to start working hard to save myself. If I can save myself, I feel like I can save everything else that needs to be saved. I might actually be able to go on as a wife and mother. But that’s not going to happen if I don’t start doing some seriously deep grief counseling. This will become my job for a while. I’m so pissed I want to punch this computer screen. I don’t want this job. I want the job of taking care of you, Ronan. JUST FUCKING COME BACK HERE ALREADY! ENOUGH IS ENOUGH! THIS EXPERIMENT IS OVER. I FAILED. I FAILED BECAUSE I AM HALF A HUMAN BEING, WIFE, MOTHER WITHOUT YOU. YOU WIN. PLEASE JUST BRING HIM BACK TO ME!!!! I scream these words all the time. I have decided that I am not sane anymore. Hey, at least I’ve got that figured out. At least I’ve got that going for me. Lock me up and throw away the key. I don’t care.

Ronan. I’m sorry if I’m making you sad by being so sad. I would never want that. I hope you still believe in me and know I can still do this. But mommy is going to have more bad days then good for a while. At least that’s what they say. Seems to make sense. I’m sleepy now. I miss you so much. I love you to the moon and back my favorite not spice monkey boy. I hope you are safe. Sweet dreams, Ro. Please visit your brothers in their dreams tonight. They need you.

xoxo

My Ro. I miss you so.

 

 

 

 

Ronan. I think it’s been a few days since I’ve written. The days are still creeping along, ever so slowly. You’re still gone and I am still here. Barely. We are still at the beach. It’s getting closer to the time when we will leave this place, and return home. The thought of that makes my stomach turn. Back to reality. In a big way. Back to life going on, without you here. Your brothers will return to school and life will move forward. I don’t know how I am going to do this without you. It doesn’t seem possible.

I’m not really sure how the days have been going by; but they have. My memory is still foggy as I sit and try to recall how we’ve spent our time. A little time at the beach, eating out, seeing some movies, running….. I think I’ve slept a lot. Mostly just laying in bed, missing you. Not really living as I’m still not ready to. I had dinner with your daddy last night. It was a sad dinner. Everything with him is sad because we are both so sad about you. We talked about you a little, but dinner was mostly filled with silence and small talk. We saw a movie afterwords and it was really hard for us both to sit though it. My lack of concentration is distracting to everything I do, even trying to sit through a mind numbing movie. You would think things like that would be easy for me, but they are not. Even the simplest things have become difficult.

I think I’ve been avoiding phone calls. Crap. I haven’t called your Nana back in a week. Grandpa Steve has called for weeks and I haven’t returned his phone calls either. I’d really just prefer it if I weren’t here in this world anymore to worry about returning phone calls or having people worry about me. I just wish I were with you. Not my choice though, I know. I miss you more than ever.

I’m reading a new book. I like it so far, although I’m not that far into it. It’s called, “The Other Side of Sadness.” It’s basically about the way the mind works when losing a loved one. It is making sense to me as it’s more of a scientific approach to the way the mind and body work when dealing with so much pain. I think I’ll finish it in a few days, but it takes me longer to read books now. I used to fly right though them, absorbing everything easily. Now, I find myself having to go back and re read things and taking the words at a slower pace. It’s as if I’m becoming an entirely different person. Even the way I read a book is fucking different now. Just when I thought I had myself and life all figured out. Turns out, I knew nothing and I only really existed as the person I was, due to being your mom. I don’t know who I’m supposed to be without you. You were such a big reason to why I was the way I was. That person seems gone. I do get glimpses of her every once in a while. Certain people bring out parts of me that I miss so much. Macy is one of them. So are Liz and Olivia. I guess it’s because I feel so comfortable around them. One second I can be looking at Macy, and we will both be crying about you and a second later a song will come on and the next thing I know we are singing our lungs out together to an old school song, while laughing so hard we can hardly breathe. Thank god for those moments…. I need to be around people who make me laugh. Laughter really is the best medicine. For a few minutes a day, it makes me happy again.

I started Liam and Quinn in a camp over here today. They desperately need something to keep them busy, especially Quinn. He’s been really clingy to me which is understandable, but also not healthy for either of us. They both seemed to think it was o.k. and the will go back all week. I am hoping they will like it a little more tomorrow. I think it looks like a really fun camp, but I know for Quinn it’s just that he is separated from me and worries about where I am, what I’m doing, and if I’m coming back. He seems unsure about everything no matter how much I try to convince him that nothing is going to happen to me. What I really want to do is scream that he is absolutely right, that he is so fucking smart, that there are NO guarantees in life, and something could happen to me, as they could happen to any of us at any time of the day, because they can. Look at you, baby. My healthy, strong, baby boy who had this fucking cancer eating away at his body and nobody knew it. Quinn is completely right, completely intuitive, but that is not proper knowledge for an 8-year-old to know. It’s my job as his mom, to reassure him that everything is going to be o.k., when I know this in fact, could be a fucking lie. I am trying my best to protect the shred of innocence that your brothers have left. They have had to learn such a very hard lesson, one that a child should never have to learn. I have to make a choice with this lesson. I can either let it destroy them, or make them in to better human beings because of it. I am working on making them better human beings, trying to take losing you and the lessons that have come with it and turning it into something positive. It feels like such bullshit to me though because it’s not the truth. The truth is this is totally fucked and they shouldn’t have had to learn such a hard life lesson this way. All I really want to do is hide in bed, cry, and scream and let your brothers do the same. I can’t though. I have to go on, I have to give them what tiny pieces of me that I have left. I am giving them everything I have, but it is not much. They really are amazing little boys though. Such good, sweet, funny, smart, boys. Liam has the mind of a 30-year-old and Quinn and his memory that blows me away. I do find myself blown away during many points of the day over things that they say or do. Life has so quickly gotten ahead of me and it’s as if I cannot catch up, no matter how hard I try.

O.K. baby. I think I’m tired now. It’s 2:30 a.m. Ambien is kicking in. UGH. Once again I had so much more to say to you but just cannot do it tonight. Just know I miss you so much. I love you to the moon and back and hope you are safe. G’night my Ro baby. Love you forever.

xoxo

 

Just say no to death do us part…….. time to update wedding vows people. What if your child died? Did you ever think about that while saying them???

Ro

Ronan. Hi my love. I hope you had a good day. That sounds so weird to say, because how could any day possibly be good when we are apart?? I miss your giggles so much. The world is so empty without them. I know I say this all the time, but I would give anything to have you back. I tell you all the time to please take me with you. I know you can’t, as you wouldn’t do that to your daddy or brothers but I miss you so much.

Today was a long day. The kind of days that I seem to have pretty often now that you are gone. I managed to keep Quinn busy though. We hung out at our place and then I took him and Olivia for lunch. We came back to the condo after and hung out. Olivia helped me clean everything as we needed to get ready for Liam and Papa Jim’s arrival. She is such a big help to me. Quinn looks up to her like a sister and she is a really good playmate for him. He gets lonely when she is gone as he loves having her around. I do too.

After we cleaned, we got ready and met up with Liz. The 4 of us walked and had sushi. It was a nice dinner but it always feels weird to be doing things without you. Between, Quinn, Olivia, and Liz, I was able to keep it together as they all provided much laughter. We walked around the island a bit and started making our way back to The Shores. As we were crossing the street, I looked up at locked eyes with a mama who was pushing her little boy in a stroller. I was dying inside because of her little boys amazing, curly, red hair. I smiled at her and she looked at me and goes, “Maya!” She approached me and introduced herself and gave me a warm hug. She follows this blog as does her sister whom I had the pleasure of meeting as well. We have mutual friends and the friends we are all friends with are GEMS….. so I know these two women must be as well:) We chatted for a few minutes and I managed to only get choked up once. It was so sweet, so rewarding, and it just felt good to hear them say that they think about you everyday. How I will never be without you because you live in each and every one of them. How you’ve inspired them to do something more with their lives. Nothing will ever be worth losing you for, Ro. But in losing you, people are finding what it truly means to live a life you are grateful for. Do I hate that it has to be you and me teaching this lesson? Absolutely. But we cannot control our fate, our destiny, what is being set out in front of us. It is not up to us so we have to just give in and trust that this is what our purpose in life is supposed to be. To help others see their way, to help them be more grateful and kind, to let them help us by raising awareness for you and Neuroblastoma or childhood cancer in general.

As I was talking to those two beautiful ladies today, I honestly felt you there by my side. It was weird. At one point, I looked down at my feet to see if you were there. That is how much I felt your presence. I then looked over at Liz and gave her a teary smile. Liz is my home, my heart, part of my soul. She gets it. She knew you were there today too….. I could tell just by looking at her. I was honored to meet both of you today and just wanted to tell you thank you again for loving and supporting strangers whom you didn’t even know, until today. I can’t wait to see you again.

After our “meeting random strangers,” whom I don’t know but they pretty much know everything about me…. which is weird but I’m oddly comfortable with it….. we went back to our condo. It as time to get ready to pick up Liam and Papa Jim at the airport. It’s been nice having some one on one time with Quinn. He’s really opened up to me and we had some pretty intense conversations. He is like a little sponge and never forgets anything I do or say. I got to watch him open back up to me again and he told me how hard it was on him to not have me around to take care of him when Ronan was sick. I told him I knew, and that it was hard on everybody. But we didn’t have a choice. We had to take care of Ronan the best we could and I’m sorry that I had to be away from him for so long. I hope he will forgive me. I would have done the same thing for him and I tell him this all the time. I just hope he really believes it. An 8 year olds mind is such a fragile thing when dealing with a tragedy. I don’t have all the answers and this is when the therapy will come into play when we get back. I recognize that we all will be needing it pretty intensely.

I was thinking about this the other night on one of my runs. For some reason I started thinking about wedding vows. The whole, “Until death do us part.” I couldn’t stop thinking about it and I thought to myself, I’ll bet when people say those vows, they don’t take into consideration if the child would be the one to die….. would death do them part?? I think people say that vow just thinking of one another, as man and wife; never a child because that is just too horrific and does not happen. WRONG. BIG FAT LIE. It happens. And I am so freaking glad Woody and I did not say those vows to each other. Not that they are awful…. but we are just different. We had E.J. Kotalik marry us because it was important to us to make them a part of our family. I never knew how much we would truly need them. We now need them more than ever. We didn’t read the traditional vows. We read a poem by E.E. Cummings, instead. One of my favorites:::::

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

It was perfect for us and still is. And whomever is telling my mom the statistics for people who divorce after the death of a child….. Seriously needs to stop. This is not something a grandmother who has just lost her grandson and who is worried sick about her daughter, needs to hear. I know the statistics, Woody knows them. We know who we are. We know that throughout all of this, we’ve stayed on the same page with pretty much everything. We know we are each others best friends. He has my heart and I have his. Forever. End of story. We don’t do drama, we don’t do hurt, we don’t do fighting (unless you count the time I threw a slurpie at his head) We do love. We love our twins. We love each other. We are not going to let cancer ruin anything else for us. MOTHERFUCKERCANCER. You’re not taking anything else away from me. You took the most precious thing that has ever been mine and I will fight you until you die and exist no more. YOU FUCKWAD.

Oye! Ronan! I’d better be signing off now. Before I get too bloody out of control! I love you my not spicy favorite monkey. I hope you are safe. I hope someone is taking good care of you. I just want you back here with me. Please. This life is too hard without you. I LOVE YOU TO THE MOON AND BACK RO.

xoxox

I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are  asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed  brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

Rain in May

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

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

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

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

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

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

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

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

xoxo