Not a life full of beauty but one full of beautiful moments instead

Ronan. Today was one of those days where I just could not stop crying. I cried after I dropped your brothers off at school, I cried over every single Taylor Swift song that came on the C.D. I was listening to, I cried when I ran over to the mall looking for a very specific gift which I could not find, I cried when I went over to the baby girl section and tried to look at the clothes. I had a flashback to the days of when I used to ohhhh and awwww over baby girl clothes. Today, I didn’t see anything I liked and I just wanted to rip everything off of the racks. What is wrong with me? Then I remembered. Grief. Hormones. Pregnancy. Stress. Not sleeping well. Missing you. A lot is wrong with me, actually. WTF asshole mother fucker who thought I could handle all of this. All of this is way much for one person to handle. I left the mall, upset and sent my little Mandy Bee a message. “I need your help. Call me.” I told her about the gift I needed to find. She of course made a ninja plan to help me tomorrow, go and find it. She called around to a few places. Tomorrow will be better with my sidekick in tow to help out with my crisis which is actually not a crisis at all. It felt like it today.

I got a text from your Sparkly. I went down to his office. I picked up Starbucks. A coffee for him. A water for me. We shared some fruit and nuts. We sat and caught up. Our weekly little catch up that means everything to me. “Why are your eyes so red today?” He asked. Fuck, I thought to myself. I was not going to mention to him, how I had been crying most of the day but apparently my bloodshot eyes were not cooperating. “Oh, that would just be because I’ve been crying all day.” “Why so much today? Just the usual?” he asked. “Yes. Just the usual. I just miss Ronan so much, all the time, that’s all.” He knows that. He always knows that. We talked about some other things. He was proud of the advice he gave me that I listened to. I told him how he was pretty much the only person I listened to in this life anymore. He knows that too. You know what I told him today? That my life without you is full of so much pain, sadness and hurt. That all I get now are beautiful moments in life. I don’t get a life full of beauty, only moments. Those moments mean so much to me. They are like the air I breathe and I inhale them as much as I can. This is why it is so important to me, the people we surround ourselves with and the life we choose to live. The moments of utter beauty and bliss that I only feel by being with certain people. I soak them up whenever I can, as much as I can. They help me to survive this life I live now, without your sparkly eyes, little laugh and sweet lips. A life full of moments is what I am left with, Ronan. I’m afraid this is the best it is going to get. I will be thankful for those moments. I am trying my best. But I miss the days when life was always beautiful, always joyful, always full of such love and laughter. Back when you were healthy and here. Everything was so simple and so easy. I was always so thankful for what we had. It’s hard to have the all ripped away and still look on the bright side of things. Mother fucking asshole cancer. I hate you.

We went out to dinner tonight to one of our favorite restaurants, Tarbell’s. We sat, just the 4 of us and I tried to let myself relax and enjoy our dinner. This never happens for me. My mind is always wandering to where you would be sitting, what you would be eating, how beautiful your little face would have looked lit up by the flickering of the candlelight. We talked about Poppy for a while. I told your brothers once again, how I really want to name this baby girl, Poppy. They are so not cool with it. Quinn looked at me and said, “Why do you want to name her Poppy? That is basically like naming her Wooddawg.” I had to laugh at that. I told him about the story that somebody told me about the Poppy flower.

Flanders is the name of the whole western part of Belgium. It saw some of the most concentrated and bloodiest fights at the first world war .

There was complete devastation. Buildings, roads, trees and natural life is simply disappeared. Where once there were homesĀ and farms there was now a sea of mud, a grave for the dead where the men still live and fought.

Only one other living thing survived and that was the poppy, flowering each year with the coming of the warm weather. It brought life, hope, color and reassurance to those still fighting.

In Flanders Fields the poppies blow

Between the crosses, row on row
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

 

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie,
In Flanders Fields.
Take up our quarrel with the foe
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders Fields.
John McCrae 1915

I’ve am living in a war zone every single day. I am surviving, just like the Poppy flower. If I wasn’t sold on the name Poppy, I sure am now. Who am I kidding? I think the name is darling and it truly makes me smile. It makes me feel happy. I don’t think there is any deciding until we actually see this baby girl. Even if we name her something else, she will be called Poppy as a nickname. It is already her name, and she is not even here. Now if I can only get those brothers of yours on Team Poppy. I think you would have liked the name. I think it would have gotten the Ronan seal of approval.

This is the end of your story for tonight, baby doll . I am as always, wiped out. I’ll fall asleep quickly as I have been doing so easily lately. Only to wake up around midnight to toss and turn for the rest of the night. I kind of miss my Ambien is the devil days. The devil was kind of fun to dance with. Sometimes, I miss it. I miss you. I love you. I hope you are safe. Sweet dreams, little one.

xoxo

Five Dollar Friday!!!

 

 

We are sooooo close to getting this trial for Dr. Yael Mosse at Chop funded. Do you want to help??? Do you have 5 dollars to make me holla?!?! Skip the Starbucks today! Let’s save some kids!!!

The donations have been pouring in thanks to the power of Facebook and social media in general! I am so humbled, proud, and filled with RoLove that I could explode. Thank you so much to all of you who have donated already! It’s because of all of you, that we will do this!

If you have not donated, there is still lots of time to do so. Come on peeps! If I can run 26.2 miles, without training, 5 bucks is nothing! It would mean the world to me. Ronan would be so proud.

Thanks lovely little blog readers! And Happy Star Wars Day, Ro baby. I know the force is with you. I love you.

xoxo

http://theronanthompsonfoundation.com/donate

Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

Whipped Cream Kisses for Dessert

Ro baby. What in the world happened last night and today that I can exist on only 4 hours of sleep, like it’s no big deal? Oh, I know….your death. This coming from a girl who used to easily sleep 8 to 10 hours a night. Sometimes 12. I was totally that girl, that mom, that me. Not anymore. The peacefulness of sleep is hard to come by, especially on nights like last night where nothing out of the ordinary happens; just reality. Last night I fought sleep until 6 a.m. I did a lot of talking to myself, played a lot of musical beds, sent some emails, posted some stuff on FB about zombies and how 4 a.m. sucks. 4 a.m. sucks, but 6 a.m. when the birds start to chirp, is even worse. 6 a.m. and you know enough is enough, so you pop an Ambien because nothing else works. I slept from about 6:20-10 a.m. I got up, showered and my mind was racing with things that I needed to do, for your foundation. So much stuff that it was making my head spin. I went to my little Starbucks office and worked away not even feeling the hangover from the lack of sleep. I was really productive during my hours at the Starbucks office, despite the extra annoying, really bad soft porn music that blared from the speakers. I got recognized by a RoFan of yours which I was really surprised by because I only go to this Starbucks for the reason that I won’t run into anyone. It’s my secret Starbucks office where nobody knows my name. Or so I thought. Today, this girl was sitting by me for a while with a boyfriend or boy friend of hers. They got up and left and I was so into what I was doing, that I hardly noticed. A minute later I noticed the girl as she came walking back through the doors and headed straight for me. I looked up just as her soft eyes asked if I was Maya. I smiled and said yes. She told me she reads this blog. I asked her how long she had been reading it for and how she found out about you. She said she heard about you when we were on Channel 12, about needing an airplane to get you to New York. Whoa. What a sweet, loyal dolly. She’s been reading for a long time. She told me how sorry she was. I tried not to get choked up as I looked into the eyes of this girl who I swear could have been 17. I gave her a bunch of your bracelets and RoCards. She seemed so nervous and shy. I told her thanks for saying hello. I meant it. She made me smile.

Margarita stopped by the F U Cancer Starbucks office to say hi and help me with some things. Turns out, by the time she arrived my brain had turned to mush. I’m pretty sure she was looking into the eyes of a zombie but she still managed to make me laugh. A real laugh too which only a few people in my life seem to be able to make me do anymore. She being one of them. I had filled out an application for something (which will remain TOP SECRET classified information until more comes of it) and my application totally sucked balls. I filled it out last night during my insomnia marathon. Margarita looked it over and goes, “Yeah… I think we can do better than this.” HA! There is nothing I appreciate more than someone who can tell it like it is. She may have saved our secret mission today because if I would have actually sent in what I had filled out, I can guarantee you it would have went right into some fancy NYC recycling bin. Thanks, Rita. Rawr! You are a RoSaver! The rest of the day/evening was spent with your Luke, Daddy and brothers. We all went to the batting cages and hit some balls. I tried to enjoy it but as you know, when going to places like this I am constantly looking over my shoulder for you to appear. I don’t think I’ll ever stop looking for you. I watched your brothers as they ran around full of so much love and life, just like they should be. I closed my eyes and imagined you were there with us and for a split second, everything in the world was perfect. Simple perfection was ripped to shreds by the reality of Hell when the giggles of a child nearby forced me to open my eyes, just to make sure it wasn’t you. It wasn’t. Fucking fuck.

These are the things I’ve seen in the past 24 hours that I just can’t deal with because it is as if salt is being poured into an open wound. The real world. The real, non bereaved, I didn’t lose a Ronan and you did world. A lunch in the middle of the day at your favorite restaurant. A lunch with the best company in the world. A new friend and an even newer friend on the most delicious day (sunny. breezy. chilly. not rainy. sunny was delicious before you died) We sat outside as the breeze whispered in my ear and I swear I could hear your voice. My eyes gazed up from the menu only to fall on the table nearby. A mom. A dad. A little boy, around 3. A new baby. The little boy, roams carelessly around the tables. Almost in a mocking sort of way that only a grieving mother would feel. The parents look on, and drink their bottle of wine in the middle of the day. A whole big bottle of red wine. Another one is ordered. They pay no attention to the little boy as he wanders off, far off. Not far enough to get swiped up, but maybe….. it could happen. But the mom and the dad are so calm, so clueless, so free that they don’t mind. They trust in the world that the fates will be kind as they let their child wander about. They look as if they don’t have a care in the world and their big bubble looks oh so delicious. I watch with my blood-shot eyes, worrying……..over what? I’m pretty sure the cancer grim reaper does not live at Chelsea’s Kitchen. Hey! That’s too far! Hey! He’s talking to strangers. But the strangers just smile and laugh. He’s so cute they say. The mom and the dad don’t really reply, they look up and smile instead at the strangers almost in a conceited sort of way. They gaze into each others eyes as they’ve just had the best sex of their lives and now they are going to drink more wine and do it again. Their children certainly don’t cramp their style. They are so mellow and laid back. I’m pretty sure the VW bus strapped with surfboards on the hood and the California license plates, belonged to them. They continue to drink the wine. The little boy returns to the table. The mom orders dessert. The little boy goes back up in his high chair. So high. I watch as he eats the whipped cream with his mama. I watch her kiss it off of his lips, they way I used to kiss it off of yours. She asks for more wine. She is tiny, I think to myself. How can she drink so much wine? Don’t they have to drive home? Oh, how I hope they walked. But even that scares me. They have a brand new little baby, too. I’m confused. Wine. Toddler. Baby. Middle of the day. Smiles all around. Is this really real? Who lives this reality? It certainly isn’t mine. Is it everyone else’s, but mine? The little boy finishes his desert. He isn’t strapped into his high chair. He stands up in it and nobody cares. Or maybe it is that thing they seem to have going on where they trust in the world so much so they just know everything will be o.k. What’s that like? I can’t remember. He stands up and I start to count. 1,2,3,4,5…………. Hey! How is that allowed? He could fall! 45 seconds later and he almost does. But his mama swoops in to catch him right before the waitress does. The waitress gives a nervous giggle. The mom does not. She giggles as if something was truly funny. How is she so carefree, I wonder? Must be the flower in her hair. The long, flowy childlike hair. My lunch dates watch this interaction as well…. but not as closely as I do. I am borderline, obsessed. I would have never been so carefree with Ronan in a restaurant, I think to myself. I would have never let him wander without keeping my eye on him every single second. I would have never let him stand up in a high chair for 45 seconds only to catch him right before he fell. I would have never drank 2 bottles of wine, in the middle of the day. Or ever. What’s their secret? Because clearly they have the key to happiness. It was all over their smirky faces that were saying to me, you have a dead child and we do not! Sucks to be you! Or maybe they really do but I’ll never know. I know I cannot truly know the story of this family by my 60 minute observation. But in my mind, the story that I had made up in my head, was too much to take. After the almost high chair falling incident, I looked up at my 2 new friends like a deer in headlights. I’ve gotta go. This is giving me way too much anxiety. They both knew it and we quickly up and bolted. After paying, of course. Thanks, Rita;) I left your little restaurant, and that family behind yesterday. But not without feeling the stings from the open salt wound that is now my heart.

That’s my story tonight baby doll. It’s late. I’m tired but not really. I will try to sleep. I love you so much. I miss you. I hope you are safe. Sweet dreams. G’nite.

xoxo

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

A high speed train to nowhere that leads everywhere

Ronan. Substance and Passion. Those are the two words that will not shut up in my head. Those are the two words that I have found on this trip. I think if you have those two words behind everything you do in life, you can do anything. I have done a lot of “things,” since I’ve been here. So much that I feel like I have been here for weeks not merely 4 days. I don’t even remember when I wrote to you last. I think it was on the train to D.C. I have been pretty unplugged here. No computer. No T.V. and guess what the best part is? No screaming voices in my head. They have totally disappeared. Do you know whose voice I’ve heard in my head since I’ve been here? Yours and only yours. I have found so much strength on this trip and I am really hoping it is just not due to being in New York City…. the city that I always feel the strongest in. Or if it is, I really hope I can carry this strength all the way back to Arizona with me and keep it around more often than it has been.

I don’t even know where to start with the Washington D.C. thing. How do you put into words a day and night were you literally feel yourself coming back to life, after being dead? I haven’t the slightest clue but I’ll try find the words to try to do it justice. I got invited to D.C. by my real life, fairy RoMother. I have decided to change the word “GodMother,” to “RoMother,” because I have issues with that asshole and all he stands for. And RoMother is just so much more fitting for this person. Because it is all things kind, pure, and beautiful just like you. It’s been a long time coming, meeting this RoMother of mine. She has quietly been behind the scenes, making big things happen in your name. She asked me a few weeks ago if I wanted to come to Washington D.C. with her and her husband to attend Annie Leibovtiz’s latest show, Pilgrimage, which is being featured at The Smithsonian. I think her words started with, “If your up for a little adventure…….” All I needed was to hear was the word adventure, and I was sold. It turns out this little adventure had to do with one of her lovies, Annie or Al as she calls her. I, of course jumped at the chance as it not only meant getting to meet this beautiful Rosoul of ours, but spending some much overdue time with her as well. Oh, and not to mention the fact that one of the greatest icons in the world was thrown into the mix. And you know my secret obsession with photography. I have been documenting things in this so called life since before I hit puberty. I told K I would be honored to come to the show with her and she told me that Annie was touched that I was coming. Um what? Annie’s touched? Is the world ending? Are pigs flying? No. None of those things are happening but you died so I have no choice but to embrace these gifts that you are throwing my way. You are working so hard babydoll. I just hope I can keep up.
I told K I would meet her on the train. She said, “Cool! It will be something like out of a Hitchcock movie!” I cracked up at this. She is so freaking RAD. I got on the train to Washington D.C. Our little fairy RoMother found me on board. I got to give her the hug I had been saving for her, for so long. I was already settled in my seat next to some stranger when she found me. Katherine and her hubby went into a different car to meet up with one of their good friends who was along for the trip as well. A few minutes later, K appeared and hijacked me into moving seats, to come up and sit with them. She introduced me to her friend and we settled into an easy conversation as we sailed through the world on a high-speed train, to our unknown destination, we joked. The scene outside looked like something from the movie, “Twilight.” It was dark, dreary, foggy, and cold. So mysterious. So Hitchcock. In other words, my heaven. I watched the trees fly by. I held your GiGi on my lap and buried my face in it a lot. I saw a Billboard sign that read, “Jesus Saves.” I thought to myself, “That is so fucking offensive. Jesus didn’t save my son. Jesus isn’t saving all of these other beautiful souls.” I got mad and told Jesus to shove it up his ass. I wish I would have had a machine gun strapped to my body so I could have blown 1000 fucking holes in that sign. I didn’t so I scribbled in my journal about it instead.
We arrived in D.C. and were whisked off to the hotel. We got checked in and we all decided to tool around the city for a few hours before Annie’s show. I spent the next few hours smiling like I have not smiled in a very long time. Here I was, with these 3 strangers who did not feel like strangers at all as I was so comfortable. Katherine’s husband, Mark gave me a personal tour of every single monument we set eyes on. And it was so much more than anything you could ever learn while sitting in a history class for school. It was more like a history class for life as I listened to this man share with me his knowledge of things that came from so much more than a book. We grabbed a quick bite to eat and before we knew it, it was time to get back to the hotel so we could get ready for Annie’s show. We all took about an hour to rest/shower/change/dress and head out the door. I wore my black jeans, a red jacket with a black skull shirt underneath it that Dr. JoRo gave me. I of course, had to represent the grief look that I carry around with me 24/7. Dr. JoRo’s skull shirt was the perfect item of clothing to do this. And of course the gold locket with your ashes in it that I always wear around my neck. I wouldn’t leave home, without you. Ever.
We arrived at The Smithsonian for Annie’s private show. I was not sure what to expect except for I knew I was in very good hands so it would be nothing short of amazing. I let K lead me around and she introduced me to every single person we came into contact with as her friend, Maya. Everyone knew her and I watched the ways their eyes lit up in her presence and how happy every single person was to see her. What an amazing soul. Not many people can elude a light around them the way K does. It’s so bright and warm that everyone just soaks it up. She is the kind of person that makes you want to be better person because everything she does is fueled with passion and kindness. And a little kick ass badassness as well. My kind of girl for sure:) We went up to see Annie’s show. To say that it was genius does not even begin to describe it. The beauty of her pictures was so powerful that it left me spending much of the night, wiping tears from my eyes. It was so electic and different from anything she has ever done before. Her latest show focuses more on the beauty of America. She featured the lives of so many influential people who even though they are gone, continue to live on due to the mark they made in the world while they were here. I spent the night getting lost in the world of Emily Dickinson, Ralph Waldo Emerson, and my favorite piece of the night… Annie Oakley’s heart target. Oh, how that piece spoke to me. The story behind it, is incredible too.You could see that Annie poured her heart and her soul into this project. Her beautiful work, speaks for itself. I had heard that she took this on due to going through some hard times. I hope it helped to heal her heart a little. Just the little time I spent looking at her work, it helped to heal mine. I cannot imagine being the one on the other side of the camera, who took those pictures and made them into art. It must have been so cathartic. At least I hope it was. Otherwise, what else is the point? A woman who spends so much time, bringing happiness to others, through her work, deserves happiness as well. So much happiness.We spent a couple of hours at the event and then Katherine took me and introduced me to Annie. When I first saw her, I thought to myself, she is so beautiful. She looked so happy and proud of her work. A true artist who is so well known that she is a household name. But at the end of the day, she’s just a mom like me. If I would have ever been starstruck at anyone in my life, it would have been her. But that’s not the way I felt when I met her. What really registered with me is that she is a mom who has unconditional love for her daughters the way I love you and your brothers. She is a mom who has had a very successful life due to working hard, fighting for what she believes in and following her heart. Those are the things I admire most about her. Those things can take you to a whole new level while living on this earth. Katherine introduced me to Annie who embraced me for a big hug. I got choked up, told her it was an honor to meet her, and thanked her for such an amazing show. The next thing I knew we were all aboard Annie’s private bus to take us back to the hotel where we were staying. Annie came on the bus and everyone broke out cheering, clapping, and screaming for her. I had a moment when I thought to myself, “HOLY SHIT! I’m on a party bus with Annie Leibovitz!” But then I remembered the price I had paid for this seat which is ultimately your death. We both know I would not be doing things like this if it were not for you. I’m just sorry you had to die in order for beautiful things like this to happen in my life. But it is because you were so beautiful, that these things are happening. Because so many people in this world know things have to change and they are going to help us do this. I am truly thankful for that. So thankful and humbled, Ronan. The Annie party bus thing sent me into a fit of giggles and I thanked you for all the little things that you are doing. As soon as we got off the bus, I was walking into the hotel with Annie right next to me. I just looked at her and said, ” As a mom whose heart is broken into a million pieces, I just want to thank you for giving me a break from that tonight by letting me get lost in your work and your world.” She looked at me and said how sorry she was and that she could not imagine going through something like this. I said I knew. Nobody can.

Everyone filled up the hotel bar where I sucked down waters and mingled with the kindest people. We ate a little food, talked about Annie’s show, and talked about you a lot too. We talked a lot about childhood cancer and how wrong it is that nobody wants to pay attention. This is not going to be the case much longer, Ro. Not if I have anything to do with it. It seems to me like a lot of people are paying attention now. It seems to me like there are going to be a lot of changes and I know it is all because of you and because of our love story that is never going to end. I ended the night with my new friend, Jesse and his husband. Jesse is the one who sent you the signed Annie Leibovitz Star Wars poster. Another doing of your little RoMother. Jesse was so excited to meet me and had tears in his eyes the entire hour we spent talking about you. His husband lost a good friend to cancer who was really young and he was so proud to wear the “Fuck you cancer,” bracelet that I gave him. He said his friend who had cancer wore a hat that said this all the time. Because we all know if anything deserves the FUCK word most in life, it is cancer. I headed back up to my room about 1 a.m. and was beat. It took me awhile to settle down as my head was still spinning from the nights events.
We all took the train back to New York the following day. It’s been non-stop since returning from D.C. I had dinner with your old Sloan roommate, Phoebe’s mom, Ellen. It was so nice to see her and hear all about how Phoebe is doing. She is not walking yet but she is getting closer. I got to see a picture of her hair that is growing back in. She is so beautiful. She is so strong. She was so strong before all of this and it is such bullshit all that she has had to go through in order to “prove” her strength. She is here though and I know Ellen is so thankful for that. I would give anything to have you here, no matter how much damage the cancer had caused.
Yesterday, I ran around the city and met up with Katherine downtown at a photo shoot that she was finishing up. I got a tour of the studio and all the behind the scenes things that go on. We walked around the neighborhood and ended up grabbing a bite to eat nearby. It was there that we had a total powerhouse/pow wow/ let’s FUCK cancer up, meeting. I told her all the ideas I have swarming around in my head. She told me every single one of them was achievable and I was just the person to get things done, the right way. I am dreaming really, really, big RO. I am thinking about doing things that nobody has done in the name of childhood cancer and I know each one of these things I set out to do, is going to happen. The face of this disease is going to change in a big way all due to you and all the love and support you have behind you. I thanked Katherine for believing in me so much and for all she has done and is doing for us as she is our biggest cheerleader who truly knows how to get shit done. And she does this all out of the kindness of her huge heart that she has. She does this without asking of anything in return except to stand by my side while holding my hand and screaming, “FUCK YOU CANCER!!!!!!!!” right next to me. She is so beautiful in every single way a human being can be beautiful, x’s 1ooo. I am so thankful to her for opening her heart and her world to us. It’s something beyond this world.
After I got home from my afternoon with Katherine, I set out for a long dark run. I ended up running by The Ronald McDonald House and I stopped and peaked inside, just begging to see you. I couldn’t find you, so I left there and headed to Sloan Kettering instead. I got to the doors of the hospital and stopped and stared inside. I told you how sorry I was. I sucked in a deep breath and let out my tears. I didn’t go in and blow anyone up tonight, but I wanted to. I went to the Starbucks nearby instead and loaded up a gift card and told the cashier to use it on everyone who ordered a coffee, until it ran out. She looked shocked. I wasn’t planning on telling her why I was doing this because sometimes it’s just nice to do things in an anonymous way. I wasn’t expecting her to ask but she looked at me and said, “May I ask why you are doing this?” She caught me off guard. I could feel the tears start to form but I somehow managed to get out the words it was for my son, Ronan, who passed away from childhood cancer. I showed her your picture. After that, I ran all the way home feeling a mixture of sadness and strength that carried me the entire way back through the dark, freezing streets of NYC. Invincible, Ro.
I have so much more to tell you, baby doll. But I’m now on a train to Philly. I’m going to see Dr. Mosse at CHOP. I need your strength more than ever as today is going to be hard. The last time I looked that woman in the eyes was when she was telling me how sorry she was and how the medical world, had failed us. I now know that there are so many more things to for blame for killing you, then the medical community alone. I’m going to fix this. I’m going to change this. You will not die in vain. You will never be a fucking statistic.
I love you to the moon and back. I miss you so much. Thank you, Ronan for filling my life with the most beautiful people possible. Thank you for all the gifts you are leaving everywhere. I hope you are safe. I love you so very much.

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xoxo

Adam Spofford owns a laptop. And meet Gary.

Ronan. A few things have happened since I’ve last written. I’ll start with Gary. Gary the stuffed animal that I bought for you in Starbucks. Gary who I didn’t tell anyone about, except for Dr. JoRo. I was waiting to board the plane with your Daddy and brothers. I was so sad. I didn’t want to get on the plane. I was sitting down. Quinn came and sat next to me. He saw Gary in my purse. He pulled him out and asked what he was and said he smelled like coffee. I told Quinn, that I had bought him for you. I said to Quinn, “Ronan would have liked him, don’t you think?” He smiled and said yes. I asked Quinn what you would have named him. I watched as Quinn got nervous and his little eyes started to tear up. He said he didn’t know. He didn’t want to answer me. He kept looking at the ground. I pushed him and told him just to think of the first name that popped into his head. He took a minute to answer me. He shyly looked up at me and goes, “I don’t know. Maybe Gary.” I thought I was hearing things. I said to him, “That’s exactly what I named him!” I grabbed Quinny’s face and kissed his lips. I told him I loved him. I took it as a sign from you, that I had to get on the airplane and go. During mid-flight, I could hear your daddy and Liam laughing behind us. They started handing us little post it notes that somebody had left in their in flight magazine. The post it notes said things like, “LOSER.” a game of tic-tac-toe was played. Hearts were drawn. But the best one said, “Adam Spofford owns a laptop. This is his laptop. It sucks.” xoxo- a friend. I don’t know why, but these little post it notes from a previous flyer, probably a 10-year-old girl, made us laugh. And trust me, we really needed to laugh. I made it though the flight. Quinn slept on me. Everything in my body hurt. The memories came flooding back of all the flights I taken with you and how sick you were. The memory came flooding back of our last flight together. How you could hardly move because you were in so much pain. I tried to push these memories out of my head. But they are here to stay. Forever. I know this.

We landed really late. Around midnight. It’s our first time to Nana and Papa’s, without you. Painful beyond words. But as I said before, necessary. Everything is so pretty. Nana made sure you are everywhere. Her tree is done up all purple just for you. Your stocking is hanging in between Liam and Quinn’s, just like it should be. Gifts bursting out of it. Your pictures are still all over her house, just as they have always been. Everything is the same, yet different. Nana’s house is perfectly sparkly, warm, cozy, and so welcoming. She has always been so good at this as I know, we are all her whole world. The house is full of laugher, despite you being gone. Not from me but from your brothers and Papa Jim. The never-ending goofing off and playing games that is going on is all too familiar. It’s just the way it has always been. I miss your giggles the most though. It is so obvious they are missing.

We drove to the beach yesterday to go clam digging. I slept most of the way as your Papa Jim drove us. I closed my eyes and thought of you almost the whole way there. I knew exactly where you would have sat, what you would have worn, the things that you would have said. The entire car ride would have been completely different. I know all of this. We arrived to the beach where we were greeted by the cold, wet weather. My favorite. I got out of the car and helped your brothers get all bundled up. We ran out to the ocean in our rubber boots. The tide was out really far and it was drizzling rain. I was playing with Liam. A small wave came chasing after us. A small wave that was much bigger than I had thought. We both ran but it caught up to us. I watched as Liam’s boots were flooded with water and he got soaking wet. I did as well. Within the first 15 minutes, we both had soggy boots and wet jeans. I laughed as I knew if you had been with us, you would have been drenched as well. I took Liam back to the truck and changed his socks but the damage was done…. once your boots are wet, forget about it. We toughed it out for the next hour but we were soon frozen. We headed back to the truck and watched as your daddy, Quinn, and Papa Jim dug for clams. They didn’t get a single one but it didn’t matter. It was all about the adventure and letting them make the happy memories they deserve. Our drive home was long. We played games in the car. I looked out the window and was reminded of why I love it here so much. There is something so peaceful about the Pacific Northwest. I decided that it was a really good thing, that we came here for Christmas. I needed to get away from the rat race of Phoenix. I needed a break. I needed some fresh air. I needed to breathe. I feel like I am suffocating in AZ. A change of scenery has been good, for as hard as I thought it was going to be….. it isn’t as bad as I had anticipated. We all needed this.

I spent this morning with your daddy. I think he was a little worried that we didn’t have gifts for your brothers. He woke me up early to get out of the house. I put up a fight about going out as I just wanted to stay in bed all day. I didn’t. I got up and showered. We ran into town. There are 3 choices when it comes to shopping in this little town. The closest one being Super Walmart. It was totally a Super Walmart kind of day. We roamed the aisles. I got mad. I got sad. I think I told him everything was stupid when I turned down an aisle and saw EVERYTHING STAR WARS. I walked off. I found some 3 wheeled bike in the middle of the bike aisle that was not attached to anything. It had an awesome basket on it. I started riding it around the store. I instantly felt better. Your daddy found me and gave me one of his, “What in the world are you doing looks?” I just smiled and told him I wanted to buy the bike. He knows I’m ridiculous and told me to come with him as he had found some things for your brothers. He led me over to the weapon aisle. Weapons. Now this is something I can get behind. He showed me some Airsoft Guns he thought they would like. You would have liked them too. I think they are kind of like bb guns, only safer. Maybe. I’m not really sure but they look like fun. I told him sure. Whatever. I started roaming the aisle for other treats. I grabbed a Machete and put it in the cart. Your daddy gave me the look again. I told him I needed the machete. He told me I indeed, did not need a machete. He told me to put it back and he would buy me my own Air Gun for Christmas. Fine I said. I put it back although I didn’t want to. I could have cut down a lot of wilderness with that Machete and protected us from the zombies that lurk about. When it Rome…….
The rest of the day was spent playing. I played outside with your brothers and Papa Jim. We played hide and seek. We played basketball. We played. I laughed. I cried. I missed you. I went into town and ran the lake. Tomorrow is Christmas. Fucking Fuck. I’m still here. I don’t think I’m going to die. I wondered this last night though. I wondered if the pain from loving you so much and missing you so much, will actually kill me. Or if the pain from loving you so much and missing you so much, will get me though this. Will it kill me or just make me stronger? I don’t want to be stronger. I don’t want to be strong. I just want you back.
I have to go now. Merry Christmas Eve baby doll. I’m so sorry. I miss you so much. I hope you are safe.
xoxo
And P.S. little lovely overly concerned blog readers. No. NO. No. I’m not going to go on anti-depresents. So stop encouraging it. If it works for you, lovely. But it’s not my cup of tea. I’m doing this alone. Solo. I don’t want any help from a stupid little pill that will not make my dead son, come back. If someone can invent a pill that will bring him back, I would take it in a heartbeat. Unless this is the case, I’m not interested. But thanks for your concern. Merry Fucking Christmas!

I don’t have a choice. I have to go.

Ronan. You’re dead? You’re dead. I’m here. Still here. Because of the someone who is behind all of this. The person who behind all of this, who is not being merciful to me. So here I stay. Blurry, blurry days. A trip we must take. No. No. NO. But yes. Me, the everything must be perfect before we go on a trip. The suitcases packed perfectly to a tee. Never to forget a thing. Everything thought out and so perfectly planned. I lived for packing you and your brothers up for our upcoming travels. So perfect. Even our house. The house. All beds made. Laundry done. Dishes put away. In case we get robbed while we are away. I wouldn’t want the robbers to come into a messy house. This is how my mind used to work. The anal mind that used to control part of my life. Now your daddy, just stares at me from the bedroom. “You need to pack. And the boys’ don’t have winter coats.” But I don’t want to go and I don’t care about the winter coats, I think to myself. “I’m not packing. I’m not packing the boys either.” Your daddy, the best daddy in the world, steps up to the plate. “I’ll pack the boys,” he says. “And I’ll take them out to buy coats.” I just look at him. “I’m sick to my stomach. I think I have the flu. I think I need to go to the hospital.” Your daddy kisses my head and leaves. I lay in bed. My jewish sister from another mother appears. She comes bursting through our front door with her arms full of homemade brisket, potatoe latkes, gifts for the boys, and silver sparkly disco sunglasses on. She yells at me from the front room. I peek out from my bed. “I’m here to take care of you, feed you and to dance for you.” I smile my fake smile. “Cut the BULLSHIT smile!!” she says. “I’m sorry. I don’t know what else to say because nothing that I say, will make this better. But I can dance for you.” She dances and jumps on my bed. She makes me put on the sparkly disco sunglasses. “I haven’t packed. I have laundry to do. I can’t do any of it.” “Well!!!!!!! That’s what I’m here for. I’ll pack you.” I say o.k. I eat some food. I watch as she grabs things to pack. “A couple pairs of jeans, your F U Cancer sweatshirt, your spirit hood, some workout clothes, some boots, underwear, pajamas, running shoes, some tee-shirts…… what else, mama?” “Nothing else,” I say. Nothing else. We sit in our living room. We watch some gun show on T.V. without the volume because I can’t figure out how to turn the sound on. That’s how much I watch T.V. now. Mandy Bee rubs my back. I let her while I listen to the 15 voice mails I have on my phone. All of which I have been ignoring. We light the menorah that sits in our window. We put your picture by it. Mandy Bee says her jewish prayer. I like it. I like the way your little face lights up in the picture from the flickering of the candles. Mandy Bee leaves. But then she comes back. “I’m not leaving you.” I crawl back into bed. She leaves. I throw up. Your daddy and brothers return. Quinn and I crawl up in Liam’s top bunk bed. We fall asleep. Ambien induced for me.

Morning comes. I ignore everything that there is to do, around the house. I shower. I throw up. I feed your brothers. Max and Ruby, comes on T.V. Fucking Fuck. Your favorite show. I throw up, again. I get your brothers in the shower. They are going to play at Cal’s house. We stop at the car wash before I drop them off. I hold their hands. I laugh and smile with them. I miss you. I drop them off. Little Heather, texts me. “Meet me at PVCC for a quick bite.” I do. I eat a grilled cheese and see all your little friends at day camp. I cry. I listen to little Heather, talk about so many things. I get lost in her world for a bit. She is good at letting me do that, without letting you get lost because she knows, it is always about you, even when LIFE is not. As LIFE, goes on for others. She embraces the you in everything that goes on and she didn’t even know you. I appreciate this. I leave little Heather but not before, Sam, her little boy, comes flying into my arms for a hug and a kiss on the lips. I smile at him and the way he reminds me of you. I drive to Dr. Jo’s but I stop at Starbucks before. I run to the bathroom and throw up everything. I brush my teeth, wipe my face and wait in line. I see a bucket full of the cutest little stuffed animals. I thought to myself, Ronan would love this. I panic. OMG. I didn’t buy Ro a gift for Christmas. I grab the stuffed animal. I start to cry. I wipe the tears and buy the little guy. I stuff him in my purse. I get to Jo’s office. I wait in the waiting room, but I really just set my coffee down and bury my head into my arms and cry. I don’t know how long I waited before she came out. 15 minutes maybe. She finds me and I make my way back to her office, only to fall on the floor and not the couch. We sit there, and I look at her. “Ronan’s dead?? Ronan died, right?? He’s dead?” She holds me and nods her head. “O.k.” I say. “Ronan is dead.” We sit. I cry. I look around her office. I see your picture. She asks if I remember her telling me that it was about 6 months after Chey passed away, that were the hardest for her. That the 6-12 months after, seem to actually be harder. I told her I didn’t remember. But I feel this way, now. I tell her I think I need to go to the hospital. I tell her how I can’t breathe. She is quiet and does not entertain my thoughts of a hospital. She doesn’t want that for me. She knows I am stronger than that; I think. We talk about what’s been going on. Halloween. Thanksgiving. Sucksgiving. Christmas. A birthday soon. The list goes on and on and on. I pulled out the stuffed animal and show her what I bought for you. She asked me what you would have named him. I tell her something silly, like Gary. We name him Gary. I look at her and say to her, “I don’t have a choice, right? I have to get on that airplane tonight and go?” She replies with, “Do you have a choice?” I tell her, No. I have to do this for Liam and Quinn. She says it is a sacrifice of love for them. I agree. I don’t want to go home. Back to the place that was our peace. Our solitude. Our paradise, without you. I have not been back, since right before you were diagnosed. It was the last place I spent with you, when you were “healthy,” but really had Stage IV cancer. I don’t want to but I don’t have a choice. I have to go back, someday. Your brothers are so excited. I tell her I’ll fake it, for them. I have to continue to fake this, for now as to not ruin their Christmas. We say our goodbyes. I ask her if her kids are coming up to Sedona. She replies with they are. “Well, all of them except the dead one.” I burst out laughing. That dark sense of humor that I so get. She tells me that Chey gets the top of the Christmas tree, every year. She tells me, that she is not a fan of these holidays either. I know why. I tell her I’m off to the airport to watch happy families everywhere, going to happy places. I’m going to ignore these families this year and pretend everyone has a dead child too. I used to be that happy family, chasing you through the airport with not a care in the world. Fucking asshole cancer. I leave her office, feeling better than when I had arrived.

I go home to a quiet house. I go into crazed mode, packing, cleaning, laundry, beds stripped, dishwasher unloaded. Robot mode. Survival mode. Instinct. Memory. This is what you do, so suck it up and do it. We get to the airport. 4 not 5. Where are you? Bags checked. “Woody, can you watch my things? I have to go to the bathroom.” I go. I throw up. I am so fucking nauseous.

I gotta go baby. I miss you. I love you. I hope you are safe.

xoxo

Somebody wake me up when this bloody holiday is over.

Ronan. I am really, really hoping that I am not truly losing my mind from the pain of losing you. I am really, really, hoping that this pain, which is already intolerable, only feels as if as if it is on steroids, just due to the fact that Christmas is almost here. I am trying hard to be logical about this. Who cares about stupid Christmas? Why is it because Christmas is here, that it is making this 10 times harder than normal? I have been doing a lot of talking to myself because Inferno Fuckwad Bob is trying to completely take over. I had this conversation in my head tonight about how much pressure the holidays bring anyway when you are a normal human being. Now, try doing these holidays when your child is dead. I am trying not to panic about the many reactions my body is having…… which I swear I have no control over. The throwing up. The blurry vision. The headaches. The insomnia. The racing of my heart. The shaking of my hands. The way I can’t seem to breathe. The way every part of my body hurts. Even the tips of my fingers. I feel like I should be admitted to a hospital. Can’t they sedate me and put me on oxygen, too? So I can breathe a little more easily? Can’t they just put me to sleep for about a week? I deserve a little break from this or else I am going to crack. Maybe I am starting to crack and these are the warning signs.

No amount of physical exhaustion is helping either. And it normally does. This morning I got up early and met Mandy Bee for a workout at some place she goes. I don’t remember much of it except we did a lot of picking up heavy tires, ropes, and punched a boxing bag. Afterwords, I was shaky and I hopped in her car as she talked me into going to Starbucks. I think she was really afraid to let me up and just drive home as I know she saw the sheer look of terror in my eyes. She drove me to Starbucks but she had to pull over right in front so I could run into the bathroom because I told her I was going to throw up. I did. A whole lot of liquid as I had nothing else in my stomach. I brushed my teeth in that Starbucks bathroom as I now carry a toothbrush with me everywhere because I am so used to this happening. We sat outside and drank our coffee and made small talk with some south african guy. The small talk turned into the how many kids do you have, question. I let Mandy answer first. My turn next. Lucky me. “Two eight year olds. And an almost 4-year-old who just passed away.” Good thing the dude was wearing sunglasses so I didn’t have to see the look in his eyes. I’ll never get used to saying this to people when they ask this question to me now. I always take a minute to answer and think to myself….”There has got to be a better way, to say this.” Turns out, there is not. It will never just roll off of my tongue.

I found myself on my bedroom floor today, huddled in the corner of my room and on the phone with Dr. JoRo, bawling so hard I don’t think she could even understand much of what I was saying. I told her how I couldn’t breathe, how I wanted to just go to sleep, and how tired I was of everything. I stayed this way for about 10 minutes. I then told her I had to go because it was time to be a mom and I was taking your brothers rock climbing. I had to play the good mommy role and suck it up. All I wanted to do was crawl into my bed and not come out. I didn’t though. I sucked it up and pulled myself together as they were so excited to be off and doing something with me. We went with Kristi and her gorgeous girls. I loved watching your brothers as they tried something new. I tried not to let the fact that you weren’t there with us, ruin everything. I made myself climb to the top of that rock wall today. Actually, Kristi really made me do it as I was content to just sit and watch your brothers. I was glad she did. I was halfway up and decided to turn around and look down. Bloody hell it was high up there. I almost stopped and turned around. A vision of your face flashed in front of me and I looked up and made myself continue on, to the very top until I touched the metal little pole that proved I did it. I know you were proud. As Kristi said, one more thing on my little list, checked off. I thought to myself…… yes indeed. But I wondered how long I could really keep all of this up. I’m still glad to have that little check mark off of my list. I did it for you and for your brothers. Because they deserve to have a mom who hasn’t completely checked out. I know I am being hard on myself but I also know that your brothers saw me as I cried in the car all the way home. I wish I could hide my pain from them all the time, but sometimes it is impossible. It is so hard to look them in the eyes when it is so visible to them, that I am hurting so badly. No 8-year-old should have to watch their mama wiping away the never-ending tears. But no 8-year-old should have to ever watch their best friend and baby brother, die of cancer either. It is all fucking bullshit.

We came home tonight to your daddy. I ran to the bathroom where I threw up the dinner I tried to eat. I took a bath and crawled into bed. Your daddy, sat with me and just held my hand while I stared blankly at the wall as the hot stinging tears poured down my cheeks and soaked my pillow. He took your brothers out to run some errands. I fell asleep for about 30 minutes. I jumped up, startled, when my body realized that I had fallen asleep and reminded me of how wrong everything is in this life now, including things like sleep. No rest for the weary.

I love you. I’m sorry. I miss you so very much. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.

xoxo

The List

People have asked, what they can do, besides the obvious which is donate to Childhood Cancer, to help make a difference in this fight. If you want to donate to Ronan’s Foundation, even if it is just a dollar; please do so. I have over 1.6 million hits on this blog. Can you imagine if every person that has read this, donated just one dollar? Or five? That could do so many amazing things in our efforts to support research for Childhood Cancer.

I’ve thought up a list. A very unconventional list, because it is not just about bringing awareness to Childhood Cancer. It is also about living a life that Ronan would be proud of. It is about living a life, that Ronan would have given anything for; to LIVE. It is about being the BEST version of yourself, that you can possibly be. This list will grow and I hope it only gets better. I’m still young. I still have A LOT to learn, mistakes to make, things to regret…. but as of now, this is my list. This is a list that has been inspired by losing the life of my son and trying to become a better human being, because of it. I hope someday, that I am able to live my life doing everything I have written below. This list, gives me hope, in my darkest hours.

1) Be thankful. For all that you have. No matter how much or how little. If you have kids, be thankful that they are healthy. Nothing else matters. If you don’t have kids, be thankful for your health or the health of the loved ones in your life. Just be THANKFUL. And know what it truly means.

2) If you’re not happy, change your life and become happy. Happiest people are the most beautiful. Become the happy person you want to be. Life is too short, not to be happy. Ronan almost lived 4 years on this earth. I’ve never in my life met a happier person then he was and look at everything he endured. Cancer never got in the way of his happiness, until the last week of his life when his life was no longer his to live. He was ROBBED of his happiness. You do not have to be; so stop complaining.

3) Volunteer. At a Homeless Shelter. At an Animal Hospital. At The Ronald McDonald House. Whatever you are passionate about. Just do something to make a difference. Volunteer at a hospital…. there are so many sick babies who need people to hold and love them. Get involved. DO SOMETHING. ANYTHING.

4) Donate BLOOD or PLATELETS. It’s not that hard. REGISTER to become a BONE MARROW DONER. You could help save someone’s life.

5) Scream about Childhood Cancer Awareness with me until people start to listen. Write to local companies, small companies, big companies, your favorite Celebrity, the Media, Congress, The President, The White House, anyone you can think of; until people start to listen. If there are enough of us screaming, they will have to at some point. The lack of awareness/funding is UNFUCKINGACCEPTABLE. Media is very powerful. We have to get them on our side.

6) Educate the people around you about how this can happen to anyone. If you want your child to get a Urine Test, ask for it. Knowledge is POWER. Learn the FACTS about Childhood Cancer, like it is your bible. Know what it is you are passionate about, and why. Educate people about this blog. Scream about Ronan’s story to anyone who will listen.

7) Rules were meant to be broken in life. Break down the doors. Don’t give up if you are told No. I don’t care if it is a hundred times. Nobody ever made history in this world, by playing by the rules. REBELS RULE. Embrace your Inner REBEL. Ronan would love this so freaking much.

8) Question everything and follow your instincts. Listen to you heart as it is more powerful than your mind. I don’t know why my number 8, has turned into a smily face. Ronan must have done this. Apparently he really likes this one.

9) Take a Holiday, once a year and do something completely selfless. How amazing would it be if everyone stopped worrying about themselves, gifts, fancy clothes, on a Holiday and took the time to go to a local Hospital to drop off toys or gift cards to the parents who are struggling/sad/lonely/or depressed because their “Holiday,” now consists of living in a hospital, fighting for their child’s life. Take our self-indulgent Holidays and bring the smile to the face of a child or parent who could use it a thousand more times than you. Take your kids with you and tell them why you are doing this and why it is important.

10) Please stop to enjoy the music in life. By blasting the music you love, the loudest it will possibly go, while having an insane dance party with yourself or your kids. They will love you more for it.

11) Be inspired and inspire other people around you. Find your inspiration. Move mountains with it. Form an army. Join an army. Make something happen.

12) Get off your ass and exercise. It will change your life. It is saving mine. Run for Ronan, because he will never get the chance to run a marathon with me, like I often dreamed of. Swim for Ronan. Bike for Ronan. Walk for Ronan. Ski for Ronan. Do it for yourself and for all the other kids who will never be able to, because they are not among the living anymore. Be HEALTHY. Eat better. Stop freaking smoking. It’s insulting. Not to mention, just plain gross. YOU are better than that, otherwise, you would not continue to read this blog.

13) Get angry. But turn that anger into something positive. Do NOT start dealing with your anger by hitting the bottle, hurting others, or doing drugs. Let your anger fuel your fire, but in a positive way.

14) Pursue your dreams. If they don’t come true, at least you know you tried. Do not be afraid to fail. You should be more afraid of not trying and never knowing.

15) Continue to talk about Ronan, his story, his fight, his beauty, his life, his death…. Help me honor him by continuing to believe in him the way you do. Take my pain, of losing him, and continue on this adventure, with me. I am humbled and so thankful by all of you who continue to want to support and love Ronan. It makes me stronger. It makes me feel as if I can really change the face of Childhood Cancer because of the endless amount of love and support.

16) Love your family and friends. Cut the drama out of your life if anybody brings it to you. Stop apologizing, but apologize when necessary. Be true to yourself, your beliefs, your life.

17) Never settle. EVER.

18) LOVE with your whole heart, soul, mind and body. Make sure the people in your life, are worth it. If they are, give them everything you have.

19) Stop freaking out because your kid colored on the wall, with a black Sharpie, and then peed all over the carpet. Be glad you have a kid to create such a little creative piece of Art for you. Embrace their Inner Spiciness.

20) Teach your Children. Educate them on how lucky they are. Teach them to be kind to others. Don’t lie to them. Let them make mistakes. Guide them, push them, pull them, engage with them. Be present. Life is hard. Let them know this, without having to teach them the way that Liam and Quinn have had to learn.

Alright lovelies. This is my list for tonight. I’ll add more as I think of things. Don’t thank me for it. I had nothing to do with it. Thank Ronan. Kiss your babies. Love yourself for being so beautiful, that you want to be a part of the change.

I love you all. Ronan loves you all. I know he would be proud of this list.