I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.
Your Happy Birthday Sparkly smile. I love you.

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

Apple pies and middle fingers

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

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

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

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

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

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

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

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