Texas and a Rockstar

Ronan. I am home from Texas. I am beat from all of our traveling and feel like I could sleep for a week. I went there for one reason and one reason only. I ended up leaving there being reminded of why I choose to do this. Of why I choose to continue this and not to give up. Because this is a choice that you have made for me and nobody else. I will forever listen to you. I had the chance to meet many other parents who are fighting this fight. Some of their kids have passed away. Some of their kids are still fighting and fighting hard. Nobody is giving up. If anything, these parents are fighting even harder for what was taken from them. Whether it be their child’s life or their child’s health. Nobody is going anywhere. None of these parents are giving up until childhood cancer starts getting the attention it deserves and until a cure for Neuroblastoma is found. No parent should have to endure what we have all had to endure. No child should have to fight childhood cancer, the way you did or the way these kids did or are. It’s not right. It’s not fair. And time is not on anybody’s side. The wheel of treating childhood cancer is a very slow moving wheel and if it continues to stay this way, nothing will change. This is not acceptable.

I was able to spend some time with the person I consider to be my ultimate Rockstar; besides you. I spent some time with Dr. Giselle Sholler. I’ve met her before, but this time I had the chance to spend some real quality time with her. She just might be one of the most amazing human beings put on this planet. And I’m not exaggerating. Not only is she a bloody genius, but she is so personable, normal and funny… all which blew my mind. We talked about a lot of things. Neuroblastoma things. You things. Yoga things. Surfing things. Family things. Disappointment things. Ultimate dream things. We share a lot of the same dreams. We laughed a lot. I was my bravest and strongest when talking about you and what it is that I want to see done. My ultimate dream. I did not cry. I held it together and gathered all of my strength and did not crumble. I was strong for you. I was strong for me. I was strong for the both of us. I think I did alright. Everything I am doing, is for you. You would not want this cancer world to be this way for anymore kids. You would not want this cancer world to be this way for anymore families. We went through enough. We went through way too much. We should not have been so alone, scared, broken, and left to fend and fight for every single thing, the way we had to. You know we can fix this and make this better. I will fix this for you because this is what you would want. I will fix this for you, because I can. I will fix this and make this world less scary and more HOPEFUL. (that was for you, Rita.) Hope. The word that seems lost on me but slowly it is starting to make its way back into my life a bit. It’s hard to believe in hope when all your hope was stolen away from you. I will never love that word again, but I am trying not to vomit every time I hear it. I had so much hope for you, little one. This is certainly not how I hoped this would end up. Which is why this is not the end. I will continue to go on because stopping now, would be unacceptable. I won’t let you down, Ronan.

I have been sleeping. Like really sleeping. Falling asleep easily at night and staying that way. No Ambien needed. I don’t know why I go through spurts of this but I just do. I still have moments all the time where I’m just about to fall asleep and I drift off, thinking of you. Just as I am about to fall asleep, I’ll have a vision of you dying and I am jolted out of my sleep, feeling like I have been stabbed and cannot breathe. Things like this happen to me all the time. I am sure it will always be this way. How could it not be? I came home from Texas feeling better than I have felt in a while. All that flew out the window as soon as I walked into our house. It’s hard for me to be here, without you. It brings your daddy comfort and peace. Our house, does not do this for me. Our house fills me with a sadness that never seems to lift. I think it slowly might be killing me. But I will find a way to manage this sadness as I am not about to uproot our family from this place that everyone else, seems to find comfort in. Especially your brothers. I think leaving here, the place where they seem to only have happy memories of you, would be really hard on them. I’d rather have it be hard on me, than them. So I will just continue to do what I am doing which is spend as little time here as possible, during the day when I am alone. And when I am here with your brothers and daddy, I will try to focus on their happiness, giggles, and laughter. Or I will sometimes give myself a break and pull the sheets over my head for an hour or so like I did today. I felt tired today for no reason other than I think I was just tired of missing you.

I was a good mom, today. I went with your daddy, Uncle Jay, Charlene, Liam and Quinn, to breakfast. They all rode their bikes. I ran. I ran beside Liam and picked him up when he fell. A fall that happened so hard and so fast, that I ended up falling on top of him as I was running really closely behind him. He was o.k., just scared. He still is not a big fan of the whole bike riding thing. Quinn does it so effortlessly. Liam does not. He is still wobbly and unsure of himself. Our bike rides always kill me because they remind me of how much you loved to ride your bike. How much time the two of us spent, practicing and how proud you were of your bike riding skills. You would have totally had your training wheels off by now. You would have ridden circles around Liam. I cannot believe you are not here, to do this with us. Bike rides will never be the same for me again which is maybe why I chose to run. Either that or maybe because I have a little 26.2 miles to run in less than 2 weeks. Errrr…. I’m not sure how I’m going to pull this one off. I might be getting a little nervous for it only because I remember how hard I trained when I ran my one and only full marathon in NYC. I trained like crazy and I still thought it was the hardest thing I had ever done in my life. I have not trained a lick for this one. I guess I feel like I am running a marathon, everyday of my life now. That is how much having you gone, hurts. Nothing can be as hard as losing you, right? I think I’ll run this thing numb while pouring all of my anger/hurt/heart and soul into it. Those things alone should get me through it. Those things and knowing that I am doing this for you and all of those other kids who will never get to run a marathon because they were cheated out of life. If I don’t die doing this, I think I might be kind of awesome for doing this. I think it might be something that will make me smile. 26.2 here I come!!

I spent the rest of this Sunday, being productive. I have a board meeting tomorrow night so I met up with my secret board member (Becca) and my other awesome secret board member (thiscrazychickwhoskydivessolo) to go over some things. We sat around and to updated some things on your foundation website and hashed out some other details about some things going on. I had a breakdown in the middle of a parking lot due to a phone call that I had in my car. I was thankful for the friend that was there to give me a hug when I needed it. It’s not always good to be alone in dealing with this. Sometimes a hug, an ear to listen, and a shoulder to cry on, help. I was thankful for that Rita today, as I am every single day. How did you know, I needed her so much when I wasn’t even aware that I needed her so much? I don’t know where I would be without her and that is the Rohonest truth. I am lucky to have her.

Your brothers are sleeping. Your daddy is out for a bit seeing some friends. I am tired and have a lot to do this week. I need to get some shut eye. I love you. I miss you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

Let’s hear it for 5 dollar Friday!

 

 

It’s so easy! It’s 5 dollars! We are so very close to having Dr. Mosse’s trial funded. There’s only 16 days left, until I run 26.2 miles, without having trained for it. There is still plenty of time to donate to this great cause. Let’s save some kids! Every dollar counts and together, we can make a huge difference!

http://theronanthompsonfoundation.com/donate

Thank you so much!

xoxo

This is Dr. Mosse. This woman, due to her kindness alone, will forever own a piece of my heart. This is who you are helping me fund. And this is GREAT news!

http://www.chop.edu/service/oncology/pediatric-cancer-research/crizotinib-targets-alk-driven-pediatric-cancers.html?utm_source=facebook&utm_medium=social&utm_content=ALKtrialpage&utm_campaign=ALKtrial

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.