A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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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

Happy Fucking Mother Fucking Birthday

Ronan. I think I thought last year was a hard birthday for me to celebrate. I’m pretty sure I bitched and complained about it. I wish I would have known then, what I know now. That last year, was the best birthday of my life. I know we were in the hospital. I know we spent the day, in your bed, cuddling and playing Star Wars. I would have given anything, for that day today.

My birthday is almost over. Thankfully. I expected it to be hard. It was a day full of ups and downs. You would not believe all the beautiful things people did for me and said to me. It was a day where I had so many people try to make me smile. I smiled over a few things. It was a day full of lap dances, Miranda dances, Purple, Skulls, kisses, hugs, tears, phone calls, text messages, FB messages….. and so many beautiful people. Want to know some of my favorite things that I got told? I have a few that I can remember. Someone told me how it was just another day, right? And 2011 was officially the worst year ever. I exhaled when I read that. YES. THANK YOU. I’m being serious too, Miss J. I so appreciated your honesty. Somebody told me, “Happy Fucky Birthday!!” I laughed over that one. Thanks Sarah. Somebody wrote to me, “Happy RObirthday!” I loved that one. I got a lot of “Happy Fucking Birthdays!” I of course, loved those too. The card above is from one of the sweetest souls I’ve never met but I hope to someday. Her card made me smile from ear to ear. Thanks, K.

I spent the day trying to be kind to myself. Something that is hard for me to do now. I spent the day, just trying to get through the day, without you. I couldn’t believe I had to spend my birthday, without my best friend. I worried about you a lot today. I missed you so much. I cried a lot. I just wanted to today to be over. I told your daddy that I was so mad that I was having another birthday, and you were not. Dr. JoRo texted me to see how I was doing today. I responded back to her, “Bloody fucking fucking mother fucking awful. Shaking a lot. Going to try to run some of this off.” She said her birthday was always hell for her too. She said she was going to do some sort of kindness act for you tonight. That made me smile. I went for a run. It didn’t stop the shaking of my hands. Nothing does.

The whole not celebrating my birthday did not work either. It turns out…. the lovies in our lives were not having it. So the day and night was filled with more I love you’s, than ever. Your daddy picked up your brothers from school for me. My mind was in one of those moods today where it played tricks on me. I had myself convinced that you were going to come running through our front door yelling, “Happy Birthday, mama!” I sat and watched out the window for your daddy’s car to appear with you and your brothers in it. I imagined how you would all tell me that this was indeed a sick joke and you were alive and well. I imagined your daddy telling me he had brought you back to life, for my birthday. I know you know how this turned out. None of this happened. Not any of this, came true. Your daddy and brothers took me to AZ88, one of my favorite restaurants for dinner. I blew out my birthday candle. I made one wish. The same one that I make 50 times a day. I hoped, wished, and begged that you were safe. I put on my best face and thanked your brothers and daddy for such a nice birthday. We came home and we all snuggled in our bed and watched part of a movie. Quinn asked if the two of us could sleep in your bed again tonight. I told him o.k. We snuggled up, I kissed him goodnight, we said goodnight to you, and he soon fell asleep. I’ll sleep with him in your bed again tonight. It makes me sad that your bedroom is so empty now. I feel so guilty that it is so sad and lonely. I have been sleeping in your room just to mess up your little bed and to cuddle with all of your Master Yoda‘s and monkey friends.

I ended tonight with a phone call from one our favorites, New York Miss Macy. Fucking fuck I miss her. The phone call started off with me crying so hard, that I couldn’t even talk. It ended with us both in fits of giggles. Her ability to bring the laughter and sunshine out in me is a gift that nobody else has the capability of doing. She asked me what I was going to do in NYC. She asked me if I was going to visit Sloan Kettering. I told her I didn’t think so, unless I wanted to end up in jail. I told her I was pretty sure they had me on a watch list, after the letter I sent to Dr. Kushner. We cracked up at the thought of me wearing disquises, in order to get into the hospital. She said she knows I could pull off some awesome mustaches. We cracked up at the thought of this. She misses you so much too.

I’m going to end this tonight now, Ro. I miss you so much. I’m so sorry. I hope you are safe. G’nite, sweet dreams, I love you.

xoxo

Dear Loveliest of Lovelies,

Thank you all. For being so kind, sweet and thoughtful. Thank you for taking the time out of your day, to wish me a Happy Birthday, Unbirthday, Fucking Fucked Birthday, not a birthday, a Wild and Free Birthday, a RoBirthday, and all the other creative things you came up with. You made me smile through my tears. You made me feel loved. You made me actually feel which is hard for me to do though all the numbness. You all are the best RoFriends a girl could ever ask for. I know Ronan is so thankful for all of you. So am I.

I love you all.

xoxo

Is it possible to Die choking on your own Tears?

Ronan. Days are filled with emptiness. They are not getting easier. Nights are worse. Halloween is approaching. How am I supposed to celebrate our favorite holiday, without you? If you were here, we would be going to your school tomorrow to celebrate. I would be tucking you into bed right now, but you would have been too excited to sleep. I’m sure you would be dressing up as someone from Star Wars. It was our tradition.

Baby Ro- Chewbacca. 2-year-old Ro- Master Yoda. 3 Year old Ro- Captain Rex. Who would it have been this year? I’m not sure. Does it matter? It does to me. Halloween cards come in the mail. But nothing for you. I lose it. “What the hell?” I scream! “Did he not exist?!” “Is he that easy to forget?!” The hot tears stream down my face. ” I want a card for him, too! Not just 2. 3 little boys. I HAVE 3 BOYS! I want him back! NO! I DO NOT WANT A PUPPY OR A FUCKING BABY FOR CHRISTMAS! I WANT RONAN! I ONLY WANT RONAN!”

I don’t get to go to your school tomorrow for your Halloween party. I get to go to only Liam and Quinn’s. How am I supposed to put on my bravest face to handle tomorrow? I don’t have a choice. I have to do it for them. I had Quinn’s conference this week. His teachers words….”He is a gift to me. Such a delight. So kind to everyone. Excelling in everything. Needs a little work on his handwriting. He is off the charts in his math….” I felt like I was in an alternate universe. I looked all around the classroom at all the kids’ work. I started to cry. I apologized to his teacher. “I’m so sorry. I have no idea what’s been going on in this classroom. I’m usually the mom that knows it all. That is always helping. I haven’t been in here once this year.” She just looked at me and said that it was o.k. That I have a pretty good reason, not to be. But I don’t want a reason or an excuse.  I just want my life back. I want to be the fun classroom mama again. I don’t know how the fuck I’m going to get through tomorrow. I have thrown up all day about it. I want to go to your school. I want to dress you up. But some evil mother fucker out there decided that you brought me way too much happiness in my life, so you had to go away. But I didn’t do anything wrong to have you taken away. I only loved you so much. That is the only crime I am guilty of committing.

I went to Sedona on Tuesday. Dr. Jo couldn’t make it to Phoenix this week, so I drove up to see her. We did our session at her house and then went and grabbed lunch. It was a long but peaceful day and night. I was able to smile and breathe a bit. I know you know why. You always do. I came home, relaxed and fell asleep all night long. My sleeping has been better. I have not taken my Ambien since the night before I left for my Sedona Grief Retreat weekend. I have been able to fall asleep and I have been staying asleep until about 2 a.m. I always wake up around this time and than, the pacing begins for about an hour or two. I look for you everywhere. I scream into pillows. I cry.  Dr. Jo says it’s my animal instinct taking over. I’m like the mama tiger at the zoo, who has been separated from her baby. The mama tiger paces back and forth. Sometimes she even chews off her own limbs  because she goes crazy not knowing what to do without her baby. I feel like that mama tiger. I’m trapped on the inside of the glass cage, looking for you, watching as everyone on the outside just goes on with their lives. Everyone is happy. How can that be? What? You have a new boyfriend? No. I don’t want to meet him. I want you all to go away. I don’t want to see life go on. I want life to end. I am incapable of feeling the happiness that you feel. That you deserve. I cannot be happy for you. So, please just let me be. I have nothing left to give anyone. I am doing my best to keep myself alive. That is all I am capable of now. Forgive me. But Ronan died. Doesn’t anybody understand? How is Halloween not canceled this year? How is your school, celebrating like it is a normal year? Don’t they miss you so much, that they shouldn’t? No. Only in my mind should they. Because to me, you were so special that the whole wide world should stop. But nobody misses you, as much as I do. Which means that nobody is even capable of feeling the pain that I feel. Which means that nobody loved you more. Which is why I physically hurt so bad 24 hours a day, 7 days a week. I don’t get a break from this pain. Ever. Not that I would want it. I wouldn’t give this pain to anyone else. It is mine to carry for the rest of my life because it reminds me every second of the day how much I love you. How much I will always love you. So much that I often think I am going to choke to death, on my own tears.

This week has been a blur. I took your brothers to a park to play after school. They had the time of their lives. They played football in the rain, with some other kids. I could have sworn you were right there with them. I cried on the way home because you weren’t. I told your brothers how sad it made me that you were not there, with them. How much you would have loved it. They were both covered in mud, soaked from head to toe, just like they should have been. Where are you? Who are you playing with? How is it not us? Why is it not us? Do you think I killed you? I was supposed to keep you safe. I promised you I was going to get you better. But then you just died. Just like that. How am I supposed to live with this, Ro?

I don’t know. I don’t fucking know anything anymore except everyday without you is harder and harder and who the fuck came up with the saying that the pain will get easier as time goes on? I know who. Some jackass who is not a mom. Probably some asswad fucking fuckwad scientist who had to bury their cat. Clearly it was not a mom. Or a dad. Who’s almost 4-year-old died.

I don’t know what else to say tonight. Except what I say to you, every night. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams, babydoll. I love you.

xoxo

P.S. Dear loveliest of lovelies:::::: So many of you sweet peas have sent the most beautiful gifts. A lot of it, pretty jewelry for me to wear. Please know these things, always make me smile. Today, I wore one of my new favorite things. A little delicate gold necklace that has, “Fuck Cancer,” inscribed on it as well as a small purple jewel hanging from the chain. Oh, how I proudly wore this today. Thank you, from the bottom of my heart. xoxoxoxo a million times over.

No sugar coating necessary

Ro baby. Today has been a very long day, with no end in sight. Here it is, 1 a.m. and I’ve almost been awake for a full 24 hours. I don’t really know what is going on, but this week has been really, really, hard. I do know what is going on…. you are not here which makes everything feel wrong. Your Daddy is right next to me, out like a light. I envy his sleep. I hope you are bringing him good dreams tonight as he has had awful dreams about you. That makes me sad.

I didn’t sleep well last night at all. I remember trying to fall asleep and my pillow was soon soaked with tears. Silent tears which are the worst. The tears that I am so good at hiding, as I don’t need anyone trying to comfort me because I am o.k. Right, Ro? Nobody needs to worry, because I am going to be alright. Everybody seems to know this, except me. I’m starting to think that everyone is crazy. And here, all along, I thought I was the crazy one. I am learning that I am in fact not. Everyone else is for thinking that I can survive this. Because as of now, I really, really, don’t want to. I just want to be with you and I’m not shy about saying so. I tried last night, to fall asleep in bed with your Daddy like the good wife that I am supposed to be. I couldn’t do it. I kept thinking to myself, how can I possibly sleep, without kissing you goodnight. I wanted more than anything to sneak into your room and find you sleeping in your bed. I got up, went out to the living room and had a flash back of finding you on the couch late one night. I found you, crying softly as you tried to stop the bloody nose that you had. I swear I saw you last night, sitting there again. You are haunting me but not in a good way. In a way that makes me feel so guilty and scared. I replay the images of you at your worst over and over in my head again. It’s like a movie I am watching, where you know the ending is going to be bad, but you just have to keep watching anyway. There is no shutting it off.

Little one. I passed out after starting that last night. Passed out cold. I crawled into the bottom bunk bed where Quinn sleeps, except he was up top with Liam. I curled up in Quinn’s bed, with your GiGi and fell into a deep, dreamless, sleep. I’m sure I had dreams, but I cannot remember. I woke up groggy today and really, really, sad. I put on my best smile, got showered, dressed, and put on my best mommy face for your brothers as I took them to school. After drop off, I came home and now here I sit. In bed. I’m wearing the “Fuck God,” shirt that I had made. Yup. I did. “Fuck God,” on the front and “Fuck Cancer, too,” on the back. Deal with it. If you are up there, Ro…. playing on your white, fluffy cloud, while chasing around Master Yoda, and hanging out with “God,” can you ask him a few things for me?? I have some questions that he needs to answer. I really don’t think “he,” exists, but humor me because everyone else seems to believe in him. Can you ask him, if he is really the one in charge of this world, then why he would have allowed this to happen?? What makes him think that he loves you more than I love you?? Because that is not fucking possible. Then can you please give him a swift kick in the balls for me for taking you away to be with him. What a selfish PRICK. Can you please ask him, if he is real, than what makes him think that you were supposed to be the “chosen one.” I highly doubt you wanted to be the lucky one, to leave this earth, so you could go and do something better with your time. I know all you want is to be here with me. With your Daddy and brothers, playing football or Rockband. Causing trouble every where you went, all while melting everyone who came into contact with you, with your big blue eyes and beautiful, perfect face. Can you ask God, what mother deserves to go thought this?? And how he decides this?? How in the world can he justify the Hell he is putting me through? If he gives you some bullshit answer, such as heaven needed anther angel, can you please kick him in the balls for me again. You are indeed an angel, baby. But not the kind that needed to go to heaven. You were my angel and were meant to be here on this earth, for a very long time. I am really pissed at “God,” and his fucking plan for you. I am your mom, I am the one who was supposed to make a plan for you. My plan, never in a million years, would have involved you getting cancer and dying from it. If God gives you some justifiable answers…. which is bullshit because there are not any…. than I guess you can give him a hug for me. You can also tell him, the only way that I will forgive him is if this life is not truly the life we were meant to live together. That after this Hell of a life that is now mine, the next life I live will be spent with you and we will be together for a thousand years. I will survive this Hell of a life, holding on to that little sliver of hope that you are waiting for me on the other side and we will get to come back to live happily ever after, the next time around. God has a lot of fucking making up to do. Fucking Asshole.

The tears are endless today and I’m not leaving bed until I have to get your brothers from school. I’m hiding today as I deserve to. It’s been a while since I’ve done this and I am feeling really beat down from all the constant going, going, going…..that I have done. Yesterday, I met with Dr. Joanne. I was crying before I even got to the elevator to go up to her office. She had me do some homework that I finished and brought to our session. It involved sitting with the words I had written, 2 days after your diagnoses. I took those words, and wrote myself a letter from you. I read it out loud to her and cried while doing so. We talked a lot about my letter from you. I told her how you always called me, Mama… never Mommy or Mom. I loved hearing the way you called me Mama, so much. It was one of my favorite things about this life. We talked a lot about you, me, and my grief, Inferno Fuckwad Bob. The work I do with her is always hard, but it is worth it as I leave there feeling as if I am making progress. I am surprised how easily is has been for me to just let the floodgates open with her. I know a big part of this is because when Dr. Joanne works with me, she does not push me… she pulls me. There is a big difference and we both know I don’t do well with people who push me. I will instantly throw up a big block wall and you will never get in. It’s my defense mechanism. I like to be pulled; I am o.k. with that. I can handle that.

We sat and talked about how everything I am feeling is normal. She told me that she has worked with a lot of people in her time, but not many choose to face the darkness head on like I am. I appreciated that. Darkness is inevitable in all of this. I don’t want to be afraid of it which is why I am choosing to embrace it, be open and honest about it. I often feel like I am a 10-year-old little girl again, who is lost in a big, black, dark forest. I know I have to keep walking and I cannot stop. I know there will come a time, when the thickness of the trees will clear, a bit of sunlight will peak through, and what awaits me is a huge, open field of flowers with you running through them to get to me. I’m not giving up on that picture, Ro. But I have a lot of walking to do, before I am going to get there. I am not afraid of the dark as long as I have you by my side, in any way shape or form. I know you loved me too much to have left me alone in this world without you. Our love will survive the darkness that surrounds me. You are my little light that will guide me through.

Last night, I went to a concert. Foster the People. FTP. Or as my lovie, who shall remain nameless, called them, “FTP….. yeah, it stands for Fuck the Police.” Dying laughing right now. Her words were in response to some guy that was hitting on her and he asked her if she knew what FTP meant. That was her smartass, genius response. I had a beautiful night, surrounded by amazing music and girls. You would love this band, Ronan. They are freaking amazeballs. If I were 18, I would totally abandon whatever I was doing and follow them around the country. Mark my words, they are going to be HUGE. We saw them play in a really small venue last night which is always the best. I’ll bet the next time that band tours, they will be playing in huge Arenas as I know they are going to blow up. Everybody needs this C.D. in their life. Oh, Foster. How I love you so. Monica…. thank you for swinging that extra ticket my way last night. It was just what the doctor ordered. You are a doll. As for you, FTP….. do you live inside my head? Your C.D., is the soundtrack for this hellish life that I live. Thank you for understanding, thank you for being Rockstars…. I hope you always stay true to your preppy, nerdy, smart, and passionate ways. You will forever own a piece of my heart because your music is such an escape for me. Thank you for being awesome. A band that Ronan would have LOVED. He had the best taste in music.

Alright little man. I’m going to cuddle up to your brothers now. I am tired after my day of crying and being angry at the world. It gets to be exhausting, feeling so many deep emotions that I have no control over. Please visit me tonight. Please let me know you are o.k. I miss you so much. I love you to the moon and back, baby doll. I hope you are safe. Sweet dreams.

xoxo

Ronan. This picture haunts me. Those eyes say it all. Did you know? Did you know you were going to leave me all along? Did you know that Mama wasn’t going to be able to save you, even after I promised you I would. I broke my promise to you. I failed you. I let you down. I’m sorry I couldn’t fix you. I sorry I couldn’t keep you safe. I’m sorry for everything. I know you forgive me. But I will never forgive myself. Your eyes say it all, Ronan. You knew.

Yay! Awesome! Best 4th of July, EVER!!!! (bullshit)

 

Ronan. 4th of July is over baby. I’m still here. Quinn is sleeping in the middle of my bed and Macy is on the other side of him. I made it through today, by the skin of my teeth. I woke up this morning and went for a run with Macy. Well, kind of. She ran on the beach and a I ran along the bay. She went into town to get us coffees after and braved the madness of Coronado. I couldn’t handle it. We didn’t go to the parade this year, but Macy saw some of the action. She saw the Clonetroopers, Master Yoda, and some other Star Wars characters. I am glad I didn’t see that, as I’m sure my reaction would have been horrific. Macy would have had to carry me back home. After I finished my run, I came back upstairs to your Nana, Daddy, and brothers who had cooked breakfast. I wasn’t hungry, but ate a little fruit and some eggs just to get everyone off my case. We got showered and Quinn headed down to the beach with Nana and Macy, and I headed to the tennis courts with Liam and your daddy. It was really warm here today, but the tennis was still fun. Your brothers are both naturals. I think I need to get them signed up for lessons. I tried to act like I was really good and kept talking smack to your daddy about how I wasn’t trying, which is why I wasn’t playing well. UGH. Turns out, I am not that great at tennis. And I am pretty much good at every sport. Tennis is not one of them. I’m o.k with that. I’m happy to admit that your daddy totally kicked my butt today. It’s a fun sport though and we had a fun time playing. It meant a lot to Liam.

We headed down to the beach where we met up with The Kotaliks and 50,000 other people. The beach was packed head to toe with people everywhere. I was soon annoyed by all the drunken idiots and we packed up our things and left. No, today I was not in the mood to watch a 60-year-old man with his shirt off, drunk, and dancing to “Jessie’s Girl.” Sorry, but I just wasn’t feeling it. The whole being wasted in front of your kids thing really bothers me. I just don’t get it and it makes me sad. The same thing applies to smoking. Last night, I was waiting outside a restaurant with Macy, Liz and Heather. There was a mom crossing the street, carrying her Louis Vuitton bag, with her young kids walking beside her. She was SMOKING in front of them, just casually in the middle of Coronado. I have become so sensitive to the whole smoking thing that people CHOOSE to do; but to do it in front of your kids…. that’s just taking it to a whole new level. I made Macy chase her down just to prove that I was not just seeing things. I should have handed her one of your little bracelets and told her how you died of cancer at 3 and not by the fate of your own hands. Maybe then, she would have decided to stop smoking and maybe you would have saved her life and the life of those kids’ mommy. Because if you smoke long enough people…. pretty much sure you will die of lung cancer if you don’t die of something else first. Plus, not to mention what it does to your skin, teeth, nails, and breath. That is just foul.  And rude. And I don’t care if I’m judging because my son died of cancer and the fact that you people are here, roaming the earth, and harming your bodies, upsets me. Your body is a temple. Treat it like one! I know if Ronan would have had the chance to grow up, he would have never harmed his little body as he learned such a hard lesson as to what it means to live a healthy life. What a gift it is. He would have been so grateful and thankful for his chance to live his life. But he didn’t get a chance. He had his chance stolen away by something that was not his fault or his choice. Fuck cancer. And fuck cigarettes. And fuck drunk parents who drink in front of their kids, get wasted, and totally embarrass them in a restaurant.

I witnessed all of this stuff tonight and I had no tolerance for it. All I could think about while I tried to eat a few bites of my chicken taco at the mexican food restaurant, was how much I missed Ronan. I have the best picture of him from a couple of years ago…. 4th of July weekend where we were sitting down in the restaurant tonight and he was chowing down on a chicken taco. I wanted to be time warped back to that moment so badly. Instead, I sat and cried, watched my mom and Macy cry as the idiot family next to us continued to suck back drink after drink with their young kids around. They got really loud and the kids were mortified. I see things like this all the time now that you are gone Ronan. People who take so much for granted in life. I would have given anything to have had you in that restaurant tonight and I would not have wasted my time with you by getting drunk. I would have been the doting mom, I always was to you… to make sure you had eaten enough, and that your brothers were o.k. I would have had a hard time sitting still as you always kept me on my toes. That was so more than enough for me. I was so happy to play that role. I’m so pissed that role is gone now. I, of course get to play it with Liam and Quinn, but it’s not the same. They are independent enough that if I leave for a couple of hours they are fine with it and I am fine because I’m not worried about them. If you were here with us, you know I would have a hard time even being away for an hour from you. Because you would have only been 4 and a 4-year-old requires so much more than 8 year olds do. I missed you so much in that restaurant tonight that at one point I thought I was going to hyperventilate. We left in a hurry to get out of there and headed to meet Auntie Karen and the girls to watch the fireworks from her patio.

Coronado has the best fireworks. Remember them from a couple of years ago, Ro? You were 2 and we had the best seats in the house, right on the terrace by our condo. Tonight, the fireworks just made me sad. I found myself wondering if you could see them from where you are. Wondered who you were watching them with. I wondered who was taking care of you. Are you brushing your teeth? Are your fingernails getting clipped? What p.j.’s are you wearing?? I wonder if you are sad that you don’t have GiGi with you, because we kept it here with us. I wonder these things all the time. Who is doing MY job for you??? I don’t care who it is, because it is just wrong. Nobody should be doing these things for you except me. I need you to come back. I need you to make the most impossible thing in the world, possible. I NEED YOU BACK. We all do. Everyone is so sad, Ronan. So sad all the time. Nobody is handling this well. The only thing that will fix this is you. Somebody just needs to drop you off on our doorstep tomorrow and say they are so sorry, that this was all an experiment and that you are perfectly fine and healthy. My mind is so far gone, that I can almost make myself believe that it is a possibility that it could happen. You know what else my mind is trying to do to me??? I think the pain of having you gone is so intense that my mind is trying to trick me into thinking you never existed. That you were simply a figment of my imagination. I think my mind is going into protection mode and it is trying to make me think I made you all up. That you were never mine. That I didn’t have the most perfect little boy for almost 4 years. It almost convinced me yesterday. I had to stop and ask myself several times if you were really real. My mind is tying to make me forget you because the pain of having you gone is too much. I am aware of what it is doing, but it takes me a couple of seconds to form a memory of you to prove my mind wrong. You were real. You did exist. You were my best friend. You were my other half. You loved me. I loved you. Remember that time I was training for the NYC Marathon and you were about 2 years old?? I loved you so much and you loved me so much that we didn’t want to be separated for my Saturday morning training run of 13 miles, so I just put you in the jogger and ran with you the whole way. You were so content and happy because you knew it was me pushing you and we were together. I felt so blessed and lucky to have you with me. I’ll never forget that day… you hardly made a peep.

I had to take your daddy to the airport tonight. I was sad to drop him off. He was sad to leave us. After I dropped him, the tears started flooding down my face. I said to myself, please let a good song come on the radio so I can stop crying and blast the music. Oh hello, my little friend Ronan. Not 2 seconds later, a Prince song came on. You know, my all time favorite, artist, before he went all crazy and totally changed his music. It was an oldie but a goodie. “Erotic City.” You know I blasted that as loud as I could and laughed the whole time it was on. It could not have been a more perfect song to have come on. If it would have been something like, “Wind Beneath my Wings,” I would have totally driven my car off of the Coronado Bridge. Thanks for that today, Ro. Best song ever;)

I know I haven’t written in a few days and I’m sorry. I’ve been totally absorbed in the people around me. Your brothers, your daddy, your Nana, New York Miss Macy, Liz,  Auntie Karen, Olivia, and Liz’s friend, Heather. We have been doing things like playing tennis, having movie nights, some intense board game nights… I had a night out with Macy, Liz and Heather last night that was much needed. Innocent, girly, bonding time. We watched dolphins at the beach during sunset, had pizza, held hands, laughed, and cried from laughing so hard. These long days and night where I am all consumed with people make me exhausted by the time I get to bed. I’ve just kind of needed a break from staying up so late to write to you. I feel guilty about it too. I know h0w silly that is, but it’s though this writing to you that I still feel so connected. I feel like you know what I am saying and I don’t like the days that I don’t write and you have to miss out on what I am saying or the things I want to share with you. I know I talk to you all day in my head, but so much more comes out when I write it.

O.k. little bug. It’s 3 a.m. and I’m supposed to get up for yoga at 8 tomorrow. I told Macy tonight that I feel like my body needs an exorcism or something. Everything feels off. Everything is sore, tight, tense, and I feel like I have a ton of toxins in my body although I don’t see how that’s possible. I’ve been living off of humus and cauliflower. As well as prescription meds so maybe that could be part of it too…. I told her I think I need acupuncture or something. Everything is off. Even my run was off today. Boo for that. Tomorrow is a new day. Yoga may be the answer. We shall see, my love. Ronan. You know how much I love you. You know how much I miss you. You know how hard I am trying to be strong and it is SO hard. I will keep trying and I will never stop missing you so much that it hurts. That will last forever. I love you to the moon and back baby. I hope you are safe.

xoxo

Losing you is like somebody just turned all the lights off

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

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

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

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

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

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

xoxo

There is nothing sweeter than kissing the bald head of a cancer child

You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!