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 homes 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

“From what I can see here, it looks like you are having a baby…”

Ronan. Today, was not a day I expected at all. I had an early appointment at The Fetal&Women’s Center of Arizona. I had to take your brothers because the appointment was so early. Mandy Bee offered to come and sit with them while I went back for my appointment. As we were sitting there waiting, Mandy goes, “You know you can find out the sex of the baby here, right?” I told her I wasn’t aware of that as I thought I had to wait until I saw my OBGYN in a couple more weeks. She told me how she found out at 12 weeks here with both of her boys. I am further along than that, but not much. As soon as my name was called, I got up and asked if it was o.k. if everybody came back in the room with me. The sweet lady told me it was. Your brothers sat playing on their iPads and I was on the table, getting my little belly lubed up. Pretty soon, Poppy was on the big screen. My heart started pounding. So loudly I was sure that everyone in the room was going to hear it. The lady started measuring some things. Mandy chirped up, “Can you tell the sex of the baby today?” The technician told her she indeed could. She asked me if I would like to know. I said, “Sure!” Of course you know I am so impatient when it comes to all things being pregnant. She put the little wand over my belly. I felt myself panic. Oh god. Ronan really wanted a girl. Please. I really wanted a girl. For as much as I can say all I care about is a healthy baby, the truth is, a little girl would mean so much mainly for the fact that you wanted a baby sister. The picture came on the screen. I heard her say it was a boy, before she said anything at all. “From what I can see here, it looks like you are having a baby girl.” “Really? Are you sure?” The technician told me she was about 90% sure. I could not believe my ears. I started bawling, tears falling everywhere. Mandy came over and grabbed my head and kissed the top of it. I buried my head in her shoulder trying to control myself. It was no use. Mascara and snot everywhere. I don’t think I have stopped crying, the entire day. Quinn was over the moon. Liam chirped up that there was a 10% chance that is was not a girl. So typical. So funny. I tried to call your daddy. He didn’t answer. I had Quinn call your Nana. She thought we were all lying to her. No way could it really be a girl.

I finally got your daddy on the phone. As much as I hated to tell him this on the phone because he is in Vegas, there was NO way I couldn’t tell him. “Guess what?” I said, tears still falling everywhere. Your daddy never knows what he’s going to get with me. It could have been everything from “I’m leaving for Tibet to I bought a dog.” I think he was really relieved when he heard me say, “We’re having a baby girl.” He was so happy. He said he knew it. I think deep down, I knew it too, but the confirmation was nice today. I spent the rest of the morning calling and texting our closest peeps. Fernanda. Stacy. Becca. Macy. Liz. Dr. Jo. Melissa. Gay. Tricia. Danielle. Marisa. Carolyn. Charisma. Kass. Rach. Robyn. Rissy Girl. Katie. Meg. Our Fairy RoMo. It is her birthday today. Can you believe that shit?! I found out on her birthday, which was not planned at all! This appointment just happened to fall on her birthday! Talk about another huge sign! There was one person I had not told yet. Your Sparkly. He is the last person I told today. This was not something I was going to tell him over the phone. I had to tell him I was pregnant with this baby, over the phone. I NEVER get to make him smile with happy news, because all the news I sit and share with him is usually so fucking sad or me venting. I sent him a text. “Where are you?” He responded with “In a meeting. Are you o.k.?” I said I was o.k. That I needed to see him today. “I’ll see you in 20 minutes. Come to my office.” I met him there. I was in the middle of sending an email when he came down to get me. I didn’t see him walk up, I only heard him barking some smart ass remark to me, like he always does. He sat down. I told him to hang on, that if I didn’t send this email, I would forget to do it.” He sat. I kind of crawled over to him and gave him a big hug. He laughed at that. “What’s going on? You look pretty today. You know what the baby is, don’t you.” I smiled. “Yup. It’s a baby girl.” I watched his eyes light up in a way that his often do, when he is truly happy. I was so glad I got to tell him my news in person. “I knew you were having a baby girl. I told you that. Ahhhh! You with a baby girl. Finally, someone you can do all those girly things with that you love doing. You two are going to be something else.” I laughed and talked about you a little bit. How much you wanted a baby sister. I am still trying to absorb this all. I cannot believe all the little blessings you are putting in our lives. I left your Sparkly and as I got in the car, I sent him a quick text. “You are going to make the best grand poppy ever. She is so lucky to have you.” He responded back with a simple, “I will.” I said, “I know. Thank you.”

The rest of my day, played out in a way that I don’t think I can take much more. I got a text from Carolyn saying to call her that she had some news. I, of course went to, “Oh fuck. It’s got to be something bad, because too many good things are happening lately.” I texted her back, “Is it good news or bad news?” I was expecting the bad from my friend and foundation president. She responded with, “It might just be the BEST news ever.” I called her. I did not think anything else could happen today, that would leave me speechless. I was wrong. Tears all over. As of now, I can’t talk about our news. All I can say is I cannot believe all of this. I am overwhelmed. I am floored. I cannot believe how truly hard you are working, Ronan. I have never believed in something more in my life, then you. You are making so many amazing things happen. I ended the day with Stacy at Fernanda’s house. I told her the Carolyn news. She could not believe it. A baby girl and now this?! She looked at me and said, “How are you not so overwhelmed?! Aye! Maya! You know this is all Ronan. You know that you could have been in bed for the past year, and we would have all been o.k. with that. Because that would have been totally acceptable! But you chose not to do that, and look at everything is happening.!” I started to cry. I said I knew. I knew but I also knew from day one, that I couldn’t do that. I have to make you proud, Ronan. Lying in bed for the past year, would not have made you proud. But I appreciated Fernanda saying that. I know she meant it because she is such a true friend like that. All of my friends are. I am so lucky to have them all. They stuck by me during my darkest of days. Even on my darkest of days, when nobody knew what to do with me, they stood by me. They didn’t judge me. They may have gently slapped me here and there, but they didn’t talk ill or abandon me or whisper behind my back. This is why they are still in my life. Because they never gave up on the you and me part of this. They just let me be, trusting in me to come around when I needed to come around. For that, I will forever be so thankful. For that, they will forever be my sisters. This baby girl, is going to have so many beautiful aunties. With you watching over her, with a daddy like yours, and your big brothers, too. This baby girl is going to be the most loved little baby girl in the world. Thank you, Ronan. I so badly wish you were here. More than anything. She will be a part of you and I cannot wait to meet her. Please make her extra extra spicy.

Today, was a really happy day full of never-ending tears. Tears of both happiness and sadness. Today, my tears were more happy. I’m soaking that up, because it doesn’t happen often. I miss you so much. I love you so much. I hope you are safe. Please keep this baby girl safe for me, Ronan. I know you will.

xoxo

Happiest Birthday ever to our Fairy RoMo. You are pure magic and are totally going to make the best fucking godmother ever. Poppy is so lucky. We all are. I love you.

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Bye Bye Little Sad House! We Have a New Home!

Ronan. Guess what? I had a good day. Another one of those crazy, good days where something so big happens, that I have seriously been jumping up and down all day long. Thanks to all of the amazing people you are just throwing my way, thanks to this blog, and thanks to the most kind hearted, generous people in the world, I now have a new home. As in The Ronan Thompson Foundation has an office! You know how important it is to me, not to spend the money that people are donating on administration stuff. This is why, I have been doing everything from our house. Our sad little house where I often work from our dining room table, our kitchen table, and even my bed. Our sad little house that leaves makes my skin crawl during the day because I miss you so much. I did not want to use our money, to rent an office space so I did the best with what we had, which was our house or one of the 5 Starbucks that I troll on a regular basis.That Starbucks music was about to make me slit my wrists. But now we have an office! And the people that work in this building, could not be lovelier! They are giving me access to all of their conference rooms, space, and my very own office with a door and all. They even have a COKE machine! Holla! (but don’t tell Poppy. We are almost totally off caffeine) It is the most beautiful building and it even has a basketball court which your brothers are so excited for! They just handed me over a key, and voila! Welcome to our new home! I took Becca and Stacy there today. They both cannot believe this. Carolyn called me and left me a message that said something like, “This is the yellow brick road and you are Dorothy!” That make me smile so big. It just tells me, once again, what we are doing, is so right. If it was not, things like this would not just continue to happen over and over again. Thank you, Amy for hooking this up. Thank you, V and K. For being so kind and generous today. I can not wait to have an actual place to go to where I will be a thousand times more productive. And maybe a little less sad. Watch out childhood cancer! I’m really going to kick your ass now! I promise to be the best little tenant ever.

I have been reading all of your comments today. I had forgotten about that story that happened while Woody and I were in a Nordstrom Rack in San Diego. The one where I was watching that little girl play in all the clothes racks. I was mesmerized by her. I had just lost you. I heard her mom call out her name. “Ireland!” I almost fell over. I went up to the mom. “What is your daughters’ name?” She just looked at me and said, “Ireland.” I smiled and said, “It’s beautiful.” That has been our girl name, for about 10 years. I wonder if that was a sign of what’s to come. I have a few more weeks before I will find out. Ireland Ronan. I think you would have loved that name. We shall see, right Ro baby. If this baby is a girl, I will fall over. I never thought I would have a girl, but have always felt like I was meant to have one. I will be just as happy if this is a boy, too. But oh, how much fun would a little baby girl be. My due date is April. I have a ways to go. I think I am starting to feel a little better and pie is still my best friend. Meat is still my enemy. So much so that I am wondering if I’ll become a vegetarian after this. The thought of this made me laugh due to Dr. Jo. She is a hard core vegetarian and has been so for over 20 years. I often give her crap about this. She would fall over if I became a vegetarian. I used to love my meat, but now I think I know how she feels. I don’t my hatred with meat will last, but as of now the thought of it makes me ill. Pie. I’ll just stick with pie for now.

Your brothers have a basketball game tomorrow. They are at practice now. We are going to go to dinner when they get home. We don’t have many plans for the weekend. Most of our weekends are low key. A lot of time at home, which is still hard for me. Our house still to me feels so empty and sad, without you here. I don’t understand how even watching your daddy and brothers, watch football is normal now. As in, this is exactly what they would be doing if you were here but you are not here, so how are we doing the exact same things? The exact same things feel so wrong and are so hard for me. I wonder if this will ever get easier. I often feel like after you died, we should have just up and moved to freaking Australia or somewhere crazy. So we would be doing all different things. I know that running away would not have solved my sadness, but living in the same house, without you is hard for me. It’s comforting to your daddy and brothers so this is why I stay here. I sacrifice myself, for them. Having my own office, is going to help so much. Having my own space without your little empty bedroom 10 feet away from where I am working is going to save me. Once again, I am so grateful and humbled by the kindness of strangers.

It’s late now. We went to dinner. I ended up throwing up in the bathroom. Quinn was eating a piece of steak beside me. I couldn’t take it. I tried my best. We are home now. I’m begging your daddy to go and get me a pie from the store. Because he is the best daddy ever, he will. I’m tired. It’s been a long and busy day. I missed you tonight, when we were riding in our old jeep to the restaurant. Oh, how you loved that thing. Kind of broke my heart, to be in it, without you. Ronan, do you want to know the one question I get asked, all the time? It’s so funny. It’s the “Who is Mr. Sparkly Eyes.” A lot of you, ask that in my comments. How do I even put into words, who he is? I could describe him in a thousand different ways. But the most important thing is he is someone who loved you so much, Ronan. He is someone you loved so much. You two had a bond and almost a secret language. I know he is connected to your soul and you are to his. He is doing such a good job, of watching over me for you. He is quite simply probably one of the few reasons that I am still alive. He has saved my life and for that, I have you to thank. Thank you for him. I thank you for him, every single day. Some things I like to keep private, like people’s real names. Same with our Fairy RoMo. I have to have some things I keep to myself. Those two, will always go by their nicknames.

I love you, my little seal. Ah, for those of you who have also been asking… the logo for Ronan’s Foundation is a little seal, because that is what his name means Irish and Gaelic. I love that so much. A little seal with the biggest eyes. So sweet. Goodnight baby doll. I miss you. I love you. I hope you are safe.

xoxo

Grief, Pregnancy and Pies

 

Ronan. I think I told you that I tried to “prep,” with Dr. JoRo about this whole getting pregnant thing. We spent hours upon hours talking about it. Nothing could have prepared me for what it is like to be pregnant, after losing you. I am a natural born mother. I am a good mother. The fact that I still don’t really feel all giddy and excited about this baby, scares me a little bit. I still think this baby is going to die, so therefore I am trying not to get too attached to it yet. I guess I wrote a lot about having another baby when you were still here. I know we talked about it, but I don’t remember all the things you told me. A lot of my blog readers have been posting that you said you wanted a baby sister. I don’t remember that, but apparently I wrote it so it must be true. My foggy grief brain still makes a lot of my memories of you, hard to remember. Whatever this baby is, it will be loved. I know I love it, but I also know it will never take the place of you. It will never fill the empty space in my heart that feels like a gaping hole. I can’t even begin to think about a nursery. All I know is we have 3 bedrooms in our house and yours will not be turned into a nursery. I’m not sure what we will do. There is no way I can even fathom the thought of taking down your things and packing them away. I told your daddy he needs to build a new room for this baby because it’s not having yours. I cannot part with your toys, clothes, stuffed animals, books, blankets, pictures on the walls. I cannot take the things down from your room, only to fill them with something new. I cannot get rid of your bed and the Master Yoda that hangs above it. I won’t do it.

I am still pretty sick. The thought of any type of food, makes me nauseous, except pies. What in the hell is that all about? That’s all I want to eat. Peach Pie, Apple Pie, Cherry Pie… yes please. Any type of meat makes me throw up. Any type of cooking smell, makes my stomach turn. I’ve been living off of pie. So weird, but I’ll take it. You know in my obsessive exercising eating nothing world before I was pregnant, I would have never touched a pie. Bring on the pies now. I’ll enjoy them while I can:) I was productive yesterday. Of course this left me wiped out so I had to come home and take a bloody nap. I was going through some emails. I had been going back and forth with your Sparkly on some things. He had read my last blog post about how barbaric the cancer world is. He told me he thought I was being a little harsh. This led to me sending him an email back saying in no way, shape or form, was I too harsh. This led to him calling my phone. We had a little debate that  I took a stance on and refused to back down. You know how he loves to play devils advocate with me. Not because he thinks I am wrong, but I think he likes to provoke me into thinking long and hard about things from every angle, before I take such a strong stance. This is one of the things that I love most about him. The way he makes me exam everything that comes my way, with a magnifying glass. This led to me bawling on the phone. “You didn’t see everything he went through, but you saw more than most people. I won’t tell you everything they did to him, because I feel like I have to protect you. I know how much your heart is broken. Why would I want to break it anymore? Yes, it was barbaric. Yes, it is wrong. These are kids. They deserve more compassionate treatments. I lived in this world. I saw things that you don’t even know about. Someday, I will tell you.” I sobbed into the phone. “Darling. It’s o.k. You are right. You are so right. You don’t have anything to prove to me, o.k. He deserved better. You know you have my utmost respect, always. Come on, settle down. When do you leave for New York? Tell me about your trip.” I wiped away my tears and appreciated the way he tried to change the subject. We talked about New York for a bit. He always knows how to cheer me up, but I was still left a little shaken. I still feel like I have post traumatic stress syndrome over the things we went through. I will not ever forget the way you were treated like a lab rat by supposedly one of the best doctors in the world. What a fucking joke.

I have tried to be as productive as possible. I had a long board meeting last night. As always, it was good. I love our little unconventional board. I love the way we gather around our kitchen table, somebody always brings food, and we get down to business. There is a lot of business to attend to, but that never gets in the way of the love and laughter that fills our house while those girls are here. That means everything to me. We have so much going on which we are all so thankful for. We also know some changes are going to have to come, in order to start raising the serious about of money, that we want to raise. Let the strategizing, begin…

Sooooooo… New York!!! I leave soon. I have some serious business to attend to! I’m so excited. Stacy is coming with me. She needs a break and this trip is just what the doctor ordered. She will be great to have along with me to help with the business things that we are dealing with. We are also going to meet up with my friend, Scott Kennedy, from Solving Kids’ Cancer, another really great organization that is based out of New York. We will spend some time with our Fairy RoMo which is the thing I am most excited about. NYC with our Fairy RoMo is my paradise. It will be a trip packed with a lot of business, but a lot of fun as well. All fueled by everything Ronan. My favorite kind of trip. The only one’s I feel comfortable taking. As long as you are the reason I am going, to keep things moving forward with your foundation, your memory, and your spirit… I know great things will come from this trip.

A lot of you little blog readers have asked why I am calling this baby Poppy for now. It’s because when I first found out I was pregnant, it was the size of a poppy seed. I thought that name sounded cute, so that is why. It won’t be the real name for the baby. We have had those picked out for a long time. Our girl name was picked out even before Liam and Quinn were born. We think we have our boy name too. Ronan will be a part of both of their names, regardless of the sex of the baby. That is important to our family. We have all agreed on that. Anything else I need to address tonight?? Your questions are sweet. I love reading all of your comments. Thanks for writing them.

I think this is all for tonight, Ronan. I miss you so much. I watched your daddy come home from work today. I was laying in bed.(still sick and maybe a little depressed) He put his keys on our dresser, just like he always does, right in front of your urn. Watching him do this, I felt like I was sucker punched. His keys, our son, on our dresser. It is just all so wrong. You should not be sitting there. You should have been causing trouble somewhere like I know you would be doing, if you were here. I’m sorry for everything. I miss you, I love you, I hope you are safe.

xoxo

All good things are wild and free, right Ro???

Dear Grief/Pregancy, You will NOT kill my soul.

 

 

Ronan. This staying in bed and waiting to die, because I’m pregnant and tired, is bullshit. Hello, who the fuck does this life/grief/pregnancy/death fuckwad, think they are dealing with? This is the girl who went skydiving, just because. This is the girl, who ran a marathon, without training for it, just because. This is the girl, who is fighting with every single thing that I have, because I don’t have a choice, unless I want to curl up and die, while letting cancer take EVERYTHING away from me.  I am tired of being tired and I’m going to fight through this as hard as I can. Staying in bed, in NOT good for my mental well being. I decide to start today with, enough is enough. Just because I am tired and sick does not mean I have to roll over and totally give into that, right?? I am allowing myself to have about an hour a day in bed, not the entire freaking day. I can’t do that to myself, no matter how awful I am feeling. Am I pushing things a bit? Maybe, but it’s the only way I feel like I can survive. Hopefully in the next month or so, I’ll have some of my energy back, but until then, I WILL power through this.

I spent the day with a friend of mine. We were invited to a lunch that at a house that lasted much of the day. I went, not knowing what to expect and it was a total adventure. It felt good to be out and about, doing something a little out of my comfort zone. Actually a lot out of my comfort zone. I was in a world that I normally don’t live in anymore. A world of shiny, happy people. I don’t fit well into that world anymore, but I love our hostess so for her, I was totally game. Plus she says the word, “Fuck,” a lot which you know I appreciate. I also got to see a good friend of mine, Kristi, and it is always fun to spend some time with her. It felt good just to be out with my friend. Our conversations area always easy and honest. No need for bullshit or pretending. I don’t function well in a bullshit and pretending world. I never have and never will. We left our lunch feeling as if we had just come off of another planet, but were both so thankful for the adventure. I needed a break from MY reality today which is exactly what I got. Thanks, J- for the break, amazing lunch and your dazzling smile. It was nice to be among the living for a few hours.

Last night, Ronan, I had the most vivid dream. I was in the hospital and I had this baby of ours. It was a boy. He was so tiny and frail. I was holding him and our Mr. Sparkly Eyes came into the room. This is such a pattern, him in my dreams, always when I am dreaming about you in whatever way that I am. He came in beaming and so happy. I handed him the baby to hold and I was begging him to help me name this baby boy, as I could not think of a name. The next thing I knew, this baby started talking and saying, “Ronan, Ronan, Ronan,” over and over again. I remember being really sad because this I so wanted this baby to be you, but it was not. I woke up soon after that, totally freaked out by the baby in my dream, talking. I was aching to see your little face so badly that I wanted to throw up. I almost felt mad at the baby boy, in my dream, for not being you. I don’t know what this dream meant. If we do have a boy, we have already decided his middle name will be Ronan, of course. We have about one idea for a first name. I am kind of all out of ideas for boy first names, but we know it of course has to be Irish.

I had a nice thing happen to me today. A nice email that once again, came again at the most perfect timing. Just when I have been struggling on a little side project the past few days. It’s almost as if you are still around so much that you know when I am struggling, and you send someone into help me out or give me a big fucking sign that everything will work out. I have a lot of dreams. This one has been in the works for a while but it is nothing I have been pursuing seriously. You know how I am about just letting things, happen when they are supposed to. I am such a true believer in this, especially in the world I live in now. I might just fall asleep with a smile on my face tonight and I might just be going out to New York City in a few weeks. Our Fairy RoMo said to pack our umbrella. Gladly. Happily. Best news ever. I am sick and tired of this blinding sun. Stay tuned:) I miss our city, so very much and now I might just have a great excuse to get my pregnant ass back out there, puking and all. I am dying to see our Fairy RoMo, as well.

This is all for tonight my most beautiful boy. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

Wake up, throw up, go back to bed.

 

 

 

 

Ronan. I am not used to living a life where I am physically chained to my bed. That’s how it’s been this past week. I cannot seem to function. This extreme fatigue and nausea, are mentally beating me down. I’m used to being the energizer bunny. Go, go, go. Get this done. On to the next. No sleep needed. No eating required. Crazy workouts. Although my routine seemed crazy to most, I felt like I thrived in it. Now, since this vampire baby seems to be sucking the life out of me, I can hardly get my head up off of my pillow in the mornings to take your brothers to school. Then I usually come back home, do a few things, but fall back into a coma like sleep for a few hours. I wake up exhausted. Throw up. Get a few more things done. Lay down again. It’s fucking depressing, to say the least. Your daddy keeps telling me that I’m wiped out due to growing a home for your baby brother or sister. I am trying to relish in all the beauty of this but it is secretly making me hostile. I don’t do well with things that slow me down. I miss my workouts. I miss being on the go 24/7. But most of all, I miss you. I got up to do a few things yesterday. I went to see Dr. JoRo. We talked about a lot of stuff. How I am trying to manage everything like my stress level and this pregnancy. I told her the awful dream I had about you and how my memory of you was completely gone. I could hardly get that story out without choking on my tears. I left her office, feeling tired and sad.

I came home and fell into a deep sleep. I’m telling you, it’s all I can seem to do lately. I sent your Mr. Sparkly Eyes a text. “Is this normal? I don’t think this is normal. Do you think I’m dying? I think I’m dying.” He promised me that I was indeed not dying and to stop overdoing everything. He called me a control freak and told me to settle down and to start listening to my body instead of fighting everything. He made me promise that I would rest and put my feet up. I told him I would, but only because he told me to do so. I listened to him like I always do. He always knows best. I spent the rest of the day, resting and trying not to be resentful for it. But truthfully, this slow paced living is pissing me off. Especially when I have to be at home, in this fucking quiet house, without you. I’ve spent about the past year, avoiding our house during the day, because I hate it so much without you here. Now I feel like I am in prison. Trapped inside my own personal hell with your little bedroom down the hall, untouched like you are still here. I wander in it during the day, looking at the last drawing you did on your easel with a permanent marker on the chalkboard when I told you to use chalk so you wouldn’t ruin it. You have no idea how glad I am you didn’t listen to me on that one. It’s one of my only drawings I have of yours. My days feel so sad and lonely without you here, and with me, being stuck at home because I am literally too tired to function. I don’t remember it being this way with you and your brothers, but your daddy says he does. I am blaming it on my old age;) 34 feels a lot different from being pregnant at 25 and 29. 34 and being pregnant can suck it. I know this is what you would want. But it still feels a little like a betrayal to you. Your daddy keeps reminding me how much you wanted a brother or sister. And I keep reminding your daddy that yes, that is right, but it is also because you thought you were going to be here to help take care of him or her and be the best big brother ever. I don’t think you ever knew you were going to die, Ronan. I truly think you thought you were just going to go to sleep and wake up once again, after we got you all better. It destroys me everyday that we now have to physically be apart and I can’t take care of you, look after you, or keep you safe. There is no better place, then here with me. NOWHERE. I will never be o.k. with you being somewhere else. You were supposed to be with me, for the rest of MY life. Not the other way around. I am so sorry that you had to be taken away. That you had to be robbed of our beautiful time together. You should have been the one, watching me die from old age. I should to have been the one watching you die at only almost 4 years old. My heart will forever be broken in a way that is just not repairable. I will fight on, not because I am strong but because I won’t fail you or let you down. No mother is strong enough to survive something like this. A mother doesn’t survive something like this. I didn’t survive this. I died when you died. I just made a choice to get back up and live the only way I know how to live now… by fighting for you and all you were robbed of. I continue on because I know that you want me to make this better for others. It’s not my choice, it’s yours. I choose to live to honor you and everything you stood for which was strength, courage, and fearlessness. I live on, for you because I love you so much. Everything I do is for you.

I came home yesterday to the sweetest thing on our porch. It was a balloon with a card and a little baggie attached to it. I opened the card and it was from some girls that live in our neighborhood. They had spent the last 4 days, selling cake pops and had made about $73 dollars. They said they wanted to help find a cure for cancer and know I would put it to good use. I felt a wave of goodness wash over me. What amazing little girls. I know this lesson they are learning in life and about your story will shape them in a way that they will go on to do amazing things. I feel that way about everyone who hears about you. If that wasn’t enough to make me cry, the next thing was. I opened a letter from someone saying how they had heard your story, wanted to help, but they only had 1 dollar. They taped the dollar to the letter and said they were giving it to me. Then the next letter, from a mom, who’s husband is working 3 jobs, they have nothing, but she cleaned out her change drawer. My cheeks were soaked with tears after being hit with those 3 things. Thank you, sweet strangers. I hope you know I am thankful for you taking the time to learn about Ronan and for every single penny that comes our way. I am going to build something amazing with it. Something unlike anything that has ever been done before. Something these families and kids so deserve when going through something like this. This will be your legacy, Ronan. This will be how you live on and help others. This is my purpose.

Your daddy went out last night. I fell asleep early while your brothers played some zombie fighting video game in the living room. They kept coming in to check on me. I was out cold. It was around 10, that I heard them both crawl into bed with me. “Goodnight, mommy. Goodnight, Liam, Goodnight, Ronan.” Quinn said. Liam chimed in, too. “Goodnight boys, Goodnight, Ro.” I managed to say. I woke up around midnight, your daddy still gone. I looked for me 3 boys in my bed, but I only saw two. I punched a pillow and went back to sleep. I am awake now. It’s early in the day… around 5 a.m. I am up due to feeling sick to my stomach from this Poppy that grows in my belly. I hope today I can manage to be a little productive. Liam and Quinn have a basketball game. You would be so proud of the way they are killing it on the court. Quinn had 18 points last weekend. I know this would be your sport too, if you were still here.

I miss you. I love you. I hope you are safe. I love you to the moon and back, baby doll.

xoxo

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xoxo

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

xoxo

I miss him

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!

Sparkly Toes, Fingers, and Eyes…..

Ronan. I gave in after trying everything to go to sleep last night, and popped my old friend, Ambien. AKA-the Devil. I couldn’t take it anymore. My skin was crawling, my head was screaming, and I was tossing and turning. I had all I could take. 2o minutes after taking that evil little pill and I was out cold. Until 7:30 this morning. I woke up,wishing I had not, and praying to a God that I don’t even think exists, to let me go back to sleep for the next 5 years. Somebody, please put me out of my misery. I ask for this everyday, but nobody is listening. I had no choice, but to get ready for the day ahead.

I dropped your brothers off at school and headed to Starbucks to pick up some Coffee and a treat for Mia. I had told Sandra, the night before that I would come down to PCH to keep her company. I parked in our parking garage, and sat in my car for a while. I gave myself a big pep talk and headed into the Clinic where we used to spend so much time. I was o.k., walking in. I found Sandra and Mia; who was in so much pain. Fucking Cancer. I have not seen Mia in such a long time. Sandra brought her in today because the little button, that she has inserted in her stomach to administer all of her medication, is a bloody mess. Obviously, something is not right and Sandra was at her whit’s end. I went back with them to a treatment room. I saw Dr. Eshun who gave me a big hug and smile. He is such a good man. I sat with Sandra, and helped her as best as I could. It actually felt good to be of some use to someone today. This is how I know I am meant to spend the rest of my life, with little people like Mia. I felt at home, being back in that clinic today. I sat and watched as Mia cried out in pain and rubbed the outside of her “button,” which looks so raw and painful. I did my best to distract her with my laptop and a cartoon on my computer. My battery died as I didn’t charge it the night before. Note to self: do not show up at  a hospital with a dead iPad and Computer battery. Total fail.

Mia was seen by one of her nurses who sent over to the surgery area and to wait and see one of the doctors. I brought my “Happy Birthday,” nail polish along and sat in the waiting room and painted Mia’s toenails. She loved it and it made me happy as I thought of you the entire time I painted her little piggies. I sent our Mr. Sparkly Eyes a picture of Mia’s toes, just for you, and told him they were almost as sparkly as his eyes:) You so loved showing off your sparkly toes to him, Ro. You would have loved Mia’s today. I wear this color a lot; just for you.

After being in the surgery waiting area for about 2 hours, Sandra was finally told that Mia probably has an Ulser, which is what is causing the pain and bloody discharge. The doctor gave her a couple of options and she decided to take Mia home and start her on some new Antibiotics that they prescribed to help with the pain. They will take care of getting a scope into Mia’s tummy next week to make sure this is what the problem is. I let Sandra check out and pushed Mia’s stroller outside to the elevators. I kissed her little toes and rubbed her little bald head as she looked at me and told me how much she was hurting. I just told her how sorry I was and how I wished I could take away her pain. I vowed once again, not to stop this crusade until changes are made and awareness starts happening. I swore as I looked at Mia’s beat down, little body, that I will help her mama fight for her, as hard as I can.

After Sandra and Mia left, I ran inside the hospital to see our friend, Super Nate. I had yet to meet him and I had talked to his mama, Beth earlier in the week, so I knew they were there. She asked if she could come down to the cafeteria to see me or if I wanted to come up to meet Nate. I told her I thought I would be fine coming up. I did and walked into the new hospital, up to the 7th floor. I hadn’t been on the new floor yet. The new hospital is so big. The rooms are very nice, but the home sweet home feeling of the old hospital, seems to have been lost. I found Nate and his Mama in their room and Nate was watching T.V. He is so beautiful, Ro. You two would have been great friends. I chatted with his mama for a few minutes, asked Nate a couple of questions, and told him I would come back to visit him with and would be sure to bring him some new Star Wars guys. I told him about your buddy, Captain Rex. I will make sure he gets to know him for you.

As I headed down the elevator, I thought to myself, that I did an o.k. job…. that I was capable of handing all that I had made myself do today. Just as I was walking down the hall, it was as if I was sent back into a time warp. I found myself standing in that exact same spot, by the cafeteria, where I chased you down the hall and you told me you loved me to the moon and back. I pictured your bald head, your little Star Wars pajamas and I felt like I had the wind knocked out of me. The tears were pouring, I felt like fainting but I somehow managed to throw my sunglasses on and almost sprint out of there today. I wanted nothing more but to turn a corner and find you there, hiding from me. To hear you saying, ” I Love you, Mama. You’re my best friend.” I can’t believe I’ll never hear those words from you again, Ro.

I spent the night hanging with your Daddy and brothers. It was a low-key night and your Daddy walked down to Uncle Jay’s for a while to hang out with his friends. I spent the night cuddled in bed with both of your brothers. I took an Ambien to sleep. Yup. I had no choice. I had to get up early this morning to meet Samya for a run on the canal, Ro, and I had to get some decent sleep. I did, too. A solid 7 hours. I bounced out of bed at 6 a.m. and headed over to Taylor’s to meet Samya for our 6 mile run. It was good. I got rid of the mental block in my head as you know how much I hate that stupid Canal. Dusty, ugly, dirty, smelly, and bugs everywhere. I did my best to pretend as if I was running back in NYC….. God, how I miss that city. 6 miles went by in a blur there. The 6 miles today, was o.k. It felt good to be up and out running with my new friend. She is going to be a great motivator; but my heart just felt lost without you. I thought back to the time I pushed you for 13 miles on the Canal, with Marisa, in the jogging stroller. I remember how happy I was to have you with me. How much I loved to push you as I ran. You were so content to just sit there, as long as you were with me. You were my Yin and I was your Yang. Nothing else mattered.

I’m back home now. Everyone is sound asleep. Liam and Quinn have a basketball game this afternoon. I will take you with me to watch. I take you everywhere I go; just in a different way now. Ronan. So many kids are losing their battles with Cancer, everyday. I’m sure it’s always been like this, but now that I’m aware of it, it seems as if everything I read says, “So and so lost their battle with Cancer today. He or She earned their angel wings. Fly baby, fly.” I fucking HATE those words. Angel Wings? Give me a fucking break. This may bring some people peace, but it does the opposite for me. It just pisses me off. No child should have to be wearing angel wings unless it comes in the form of being alive and running around with pretend wings on and a magic wand. Angel Wings my ass. I guess the thought of this gives some people comfort, but it’s not for me. I’d rather think of you still here, close by me…. not far away, flying around. I don’t want to think of you as an angel… I’d rather still think of you as my Little Devil.

It’s late now and the day is gone. The day was spent hanging out. I went to The Village, to watch your brothers play in their basketball game. You would have been so proud. They played their hearts out and won their game. It was so fun to watch them play with such fire. I thought of you and how you would have yelled and cheered for them. How you would have went and sat on the sidelines next to them, instead of next to me. You always loved to be right in the middle of everything those two did. I felt sad today, sitting there watching something so happy. I put on another good show today and hid my tears from everyone. Your brothers saw nothing from me but my smile and the proud look in my eyes. Fake it till You Make it!! Everyday of this life so far without you. The days I don’t feel like faking it, I just hide in bed for most of the day and put together my master plans. I love those days the most. When I’m alone, the house is quiet but I have 50 busy projects going on. I love when Fernanda comes to try to kidnap me but she gives in and just stays in bed with me. You’d be surprised how much we could accomplished with our coffee meetings in bed. I think movie watching should be mandatory as well. Lots of coffee, Coke, and Junkfood can inspire amazing things. I think I would like to hold all “business meetings,” in my bed. Pajamas required. I could be content to never leave this house again. The sunshine is just too goddamn bright out there. I’m so over this sun. I told my friends on FB today, that I have decided to move to Forks, Washington and in with Edward Cullen. I could totally do the vampire life in dark and dreary Washington. Makes me homesick. I hate waking up everyday to “HELLLLLOOOO CHEERY SUNSHINE!!!!!!!!!!” Shut up. There is nothing to be cheery about out there. Bring on the dark, gloomy, cold, rain. Fits my mood to a tee.

Is life always going to hurt this much, Ro? Is anything ever going to feel good again?  I’ve survived another weekend and I’m exhausted from a weekend of pretend happiness. Pretend normalness. Normal things around the house. “Oh look, the Raiders beat the Jets!” “Come to dinner with us, Mom!” “Do you want to get Ice Cream, too?” I muster up the energy to tackle these normal things, but all I want to do is baracade myself in your bedroom and go to sleep for the rest of my life. Happiness is all around. Laugher is everywhere.  It should feel good to me, right? It doesn’t. It’s exhausting and I want a break. I would like to selfishly leave this life of mine behind, and disappear for a while. That’s right. I said it. And I get it. I get that I have sooooooo much to live for. I have soooooo many people who love me. But does that make any of this any better? No. It doesn’t change the fact that you are gone. And all I want is to be gone too. I’m sorry, Ro. I guess I’ve had a bad week. I really wish there was a magic wand that would make me feel better because I’m getting tired of feeling this way. Hopefully this week will be o.k. I’ve got a busy enough week ahead of me full of trying to find my way through this fog.

Or maybe I need to say peace out to AZ and go find some real fog somewhere that will allow me to truly get lost. All I want to do is to get lost. All everybody else wants me to do is to find myself. Here’s a little secret, peeps. You are never going to find me, because I am DEAD. The former Maya, does not exist anymore. When you died, Ronan. You basically took me with you. It was the only way for us to stay together. So now, my soul belongs to you. Someday, I hope to be reborn. But I will never be the same girl I was before all of this. Who knows, maybe I’ll be even better. If Ronan has something to do with this, I know I will be. But stop with the pushing. It’s not happening unless it happens on my own. This is why I have been renamed Maya Inca Thompson. My alter ego, badass name. Inca Forever! Thanks Travis Tinney. You are awesome.

I should probably go now, baby boy. I’m too full of piss and vinagar tonight to continue to write. I miss you so much that I don’t know how much more of this life I can take without you. Come and get me, please. I know you can…. so just come and do it. I can’t take being without you any longer. I can’t take not being able to tuck you in at night or kiss your sweet little lips. I miss you, Ro. I hope you are safe. Sweet dreams, my little Devil.

xoxo

Because this kid is truly awesome