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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Happy Fucking SucksGiving!!!!!!!!!!

 

 

 

Ronan. Well fuck. I had an entire post written and I went to update something else and it got erased. Bloody Hell, baby doll. Guess that’s how this day had to start off since it’s our first official Fucksgiving. Or Sucksgiving. Or Macegiving. Or the sweetest one of all, RoGiving. Yup. It’s here. That stupid time of year. When all of the normals out there are sitting around giving thanks on today, when they should be giving thanks every freaking day that they are alive, with their healthy kids. I know our little secret though. Our little secret about all of our darling little readers out there. Well, most of them. I’m sure there are assholes out there who read this blog and just go about their ignorant ways. We can’t save them all, Ro. I know our most beautiful lovelies are spending this Sucksgiving, differently, because they are all thinking about you. And how truly blessed they really are. I know none of them are ungrateful and I know they are living each and every day, to the fullest, making the MOST of the messes their children make because they are so thankful to have them there to make messes. I’m not going to lie though. The thought of everyone else, getting to be extra grateful, because of you; because of us and our story, makes me sick to my stomach. It makes me sad. It stings. But it is the gift that you left behind. A gift that I am trying my hardest to be grateful for. But you know Ro, that Thanksgiving has been banned at our house this year. I have NOTHING to be grateful for. And I’m sure to some, this makes me seem like an ungrateful beoytch. But I don’t care. Because I know what the normals out there are all saying because I have been hearing it all week. “You have so much to be grateful for.” “You have the most beautiful sons and husband and friends.” Shut up, Fuckwads. I am aware of the beauty that surrounds me but that doesn’t take away the fact that you died and you don’t get to be here with us on this fucking ignorant holiday. That doesn’t change the fact that all I want to do today is survive because I made a promise to our Mr. Sparkly Eyes and to Dr. JoRo that I intend on keeping only because I keep my promises. And I won’t break them to those two because they are walking this dark walk with me and will never turn away, no matter how painful it may be. And yes, because of your Daddy and your brothers. That is a given and never even needs to be said. So Fucksgiving is here. And I cannot wait for it to be over.

I’m so sorry I have not written is so long. I have been so busy. So tired by the end of the day, that I have been crawling into bed at night and passing out. Without the Devil Ambien. Passing out from mental exhaustion. Macy is here. I know you know that. She got here on Friday, so she has been here almost a week. She is sleeping in your room. Can she just move in with us, please? New York Miss Macy makes everything better. EVERYTHING. You know, Ro. I know we have only known Macy for just about a year but FUCK…. she is one of the biggest gifts to come of this bloody nightmare. I’ll never forget the first time we met her and when she came bursting through the doors of the Ronald McDonald House from the cold streets of New York with her big eyes, just like yours. Her sweet smile, long flowing hair, and her arms full of gifts for you and your brothers. You were always so leery of strangers, but you fell in love with New York Miss Macy within seconds. I watched your little eyes light up as this stranger chased you around and had you giggling within minutes. I watched the way that I was able to forget that you were indeed, my very sick child. It was pure magic. It was so natural. It was true love. New York Miss Macy stayed with us the entire time we were in NYC and helped take care of you. NY Miss Macy, moved away to San Francisco and when we had to go to that city, to look into a treatment for you, it was her that you could not wait to see. New York Miss Macy came here before you passed away, to spend some time with you before you left. New York Miss Macy, came back for your funeral. New York Miss Macy is here now, for Sucksgiving, because she knows I would not be surviving this, without her. New York Miss Macy has spent all week with me, your Daddy, and your brothers. She has been cleaning, doing laundry, making beds, rubbing backs, pouring dish soup in the dishwasher by accident which has caused a never-ending soapy mess which has left me in giggles. She has laughed with me, cried with me, and listened to me while I scream, cuss, and stab food to death. She went up to Sedona with me for the day to see Dr. JoRo. We spent the day talking with Jo. We all went on a barefoot hike. Macy provided the entertainment by trying to barefoot hike with us, but she could only stand the pain for so long. Dr. Jo and I cracked up at the way she winced in pain with every step. She was a trooper for even trying. Macy drove us home from Sedona as I was so exhausted from the day that I could barely keep my eyes open. She was just as tired as she spent much of the day, crying with me. She is doing exactly what I need her to be doing, Ronan, and I haven’t even had to ask or tell her. New York Miss Macy is walking through the dark side, with me. New York Miss Macy is just letting me be. New York Miss Macy has never left. New York Miss Macy, is not running away because she does not know what to do with me. New York Miss Macy is not just our friend, Ronan. She is our family. Do you know what she did this morning, on FUCKING FUCKSUCKINGCOCKSUCKING Sucksgiving? She had a surprise for us. Yesterday, she had our Mandy Bee help her run an errand so she could do something for us today, for you. She went out and found the most beautiful purple tree for us to plant in our backyard. She wrote us the sweetest card that I could hardly read because just seeing the tears pour out of her eyes, said it all. She is that thoughtful and her heart is so big that it is capable of taking this sad, sad, house and filling it with a love that everybody feels, even with your absence. On everyday but today, because I am banning this holiday, I am so thankful for that girl. The girl that some people tried to tell me, would go away, after all of this was over because she “chose,” to inject herself into our “situation.”  Macy did not choose to inject herself into anything. You chose her for me, Ronan. You chose her because I think you always knew, it would be her that would be the one to help to save me. I always knew it too. I always knew that Macy would not up and forget us, or you. I was a first hand witness of how the love for you, shined through her eyes. How it still does. How it always will. That will never change. If anything, it will just become stronger. So, here we are today. Still in our pajamas with the football on, your brothers running around the house, Macy curled up on the couch, reading a magazine. The perfect family. Almost, baby. Almost.

Yesterday, Ronan. I am glad yesterday is over. Guess what I had happen to me for the first time? I woke up from my sleep with an excitement that filled my entire body. I sprung out of bed, my feet hit the floor, and I got about 10 steps in as I was headed to your room, to wake you up. I had forgotten that you had died. As soon as I remembered, I fell to the floor and started to cry. I picked myself up, got into the shower and continued to cry. I got ready, while still crying. I went and called Dr. JoRo, as I couldn’t get myself under control. When I finally composed myself enough to finish the task at hand, which was packing your brothers lunches, I went about my day but I couldn’t shake the feeling from the morning. To feel that excitement, that pure bliss and then to have it all ripped away within seconds was like losing you all over again. It shook me to the core and left me in a fog for the rest of the day and night. Fucking BULLSHIT. Fucking BULLSHIT that Cancer killed you. My healthiest child. Fucking BULLSHIT that we are all stuck here, without you. Nothing will ever be enough, Ronan. Nothing will ever take away the way I yearn for you every second of the day. It is just something I will have to learn to live with. The way that Bella from Twilight (yup, Macy and I totally went to see that movie) will have to learn to live her new life as a vampire is the way I feel. Except lucky Bella. She will never have to be apart from the love of her life, Edward Cullen. Fuck. The whole time I was watching that movie I wished so badly that Vampires were real and that I was one of them and when you died, I imagined your little body laying in the bed. I imagined myself biting your body to inject you with my venom to turn your into a little Vampire, so that we would never have to be apart. I played that picture in my head, over and over again. You would have been the most beautiful vampire. Edward Cullen would have had nothing on you. If only Vampires were real. If only you just hadn’t gotten sick with Cancer and died. If only the fucking medical world would get a clue. If only Childhood Cancer, was as recognized as AIDS. If only. I have so many of them in my life now.

I have to go now Ro, baby. I have to get ready for our White Trash Chinese Eating Mustache Fucksgiving that we are going to try to have. I have to get ready to beat the shit of our 1 or our 3 pinatas. I’m so sorry you are not here. I’m so sorry I couldn’t save you. I miss you so much. I hope you are safe. I will love you forever.

xoxo

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6 Mother Fucking Months? Fuck you, ASSHOLE CANCER

Ro baby. 6 months. Soon. 3:22 a.m. tomorrow. In just 5 and a half hours. No. NO.NO. But yes. Because as I said tonight, as I was leaving Dr. JoRo’s, I’m being punished for something I did in a past life or something? I must have done something really, really, awful to deserve this pain, yes? That’s the only thing I can think of, that makes sense. What would I have done that would have been so horrific, that I deserved to lose you? Murdered 10,000 babies? Did I blow up an entire city? It must have been something huge, for this to happen. WTF? But it doesn’t make sense. Because I don’t really have a mean bone in my body. Except if you piss me off. Then I will punch you. But I really won’t. I don’t think I’ve ever punched a person in my life, but I think it sounds cool, so I like to say it.

What has been going on, little man? I don’t know. I don’t even know the last time I’ve written. It feels like weeks ago. The Fashion Show is Thursday. THE FASHION SHOW IS THURSDAY! I’m not sure if I’m excited. I don’t really know the feeling of excitement anymore. Am I proud? Yes. I guess. What does that, even really mean? Am I proud that I have not slit my wrists or run off to China, solo? Sure. I guess. Whatever. And I thankful? Some days. I am thankful for all the amazing people, surrounding me. Helping with this. Supporting us. Loving you. Everyday. Everyday, Ro. Because they are the people, in this world, who get it. For as much as they don’t, they do. But, I’m not thankful because you are dead. And I just want you back. But I can’t have you back, so I will surround myself with the people who won’t let me fall. Or, who will let me fall but who will be there to just rub my back and let me cry while I carry around my dead child’s blanket and bury my face in it to cry like I did tonight at the Garage. And Katie didn’t need to say anything. She just let me be. She just let me bury my head and cry while she stood by and rubbed my back. And that was enough. After that, we went out for a quick bite to eat. With her darling store employee, Christy, and Denise who flew in from San Francisco to help with the fashion show. To support us. Because she loves us and believes in you. We went to dinner and I made the girls laugh. Do you know, that never happens anymore, Ro? And you know how secretly funny I am. You know that it is only when I am truly comfortable that I am able to let me funny side, come out. We were talking about the perception of me now. I guess because I throw the fuck word out a lot on here, people expect when they meet me, that I am some tough-ass, rocking out, loud, center of attention, chick. And then when they meet me, they are thrown off because I’m actually pretty shy and quiet. I told Katie and the girls tonight that when I meet someone for the first time, that reads this blog that instead of saying, “Hi, I’m Maya. Nice to meet you.” That I should really say, ” Hi, I’m Maya. Nice to FUCKING MEET YOU!” The whole table laughed at that tonight and it was a nice way to end a hard day and night, by making some of the sweetest girls alive, laugh. Because for that split second I didn’t feel like Maya Thompson, whose son just died of cancer. For that split second I felt like Maya Thompson, the girl who has a great life with 3 healthy boys, and who is funny as shit. But only if she let’s her guard down with you. I loved that split second of feeling normal, Ro. I miss it a lot some days. Most days. All days.

I think I have been running around like mad. I’m pretty sure, after this event, I am going to crash and burn. For a lot of reasons. I’m pretty sure, Katie, deserves to go on an exotic vacation for a good 2 weeks and does not need to answer her phone or emails while I send her on this pretend vacation. If I had a magic wand, I would bring you back and send Katie somewhere amazing. And we would go with her and play in the sand and help you make Star Wars castles. I’m pretty sure, you would love all of this. I’m pretty sure, most of the people who are alive and who have kids who are alive and who can easily do this, don’t. Or if they do, they don’t know how lucky they truly are. And I hope if they read this and the next time they get to do this, that they think of you, and do realize how lucky they are. Because having a healthy family is really what it’s all about. It’s all that matters, really. I knew this. We all knew this which is why this really seems like a sick joke. Maybe if I had been a bad mom this wouldn’t hurt so much? Do you think that’s the case, Ro? Do you think if I had been a really, really, bad mom who drank and did lots of drugs and who didn’t take care of her kids that I wouldn’t be hurting so much? Do you think because I took such good care of you and loved you and your brothers so much, that the pain couldn’t possibly get any worse? I kind of do. I’ve told you this before. It’s like I’m being punished because I loved you too much. And you loved me so much that the world was scared of it or something? Or maybe it was because your eyes were too blue and mine are too green? Who the fuck knows. And I don’t know if I’ll ever know so I’ll just end this little paragraph with a poem that our Dr. JoRo sent me. Here you go, little bug.

“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”
― Rainer Maria Rilke

I saw Dr. JoRo tonight. Do you want to know her scale for figuring out how I am doing on a daily basis is, Ro? She asks me now, “So, is it a shitty day, a fucking shitty day, or a mother-fucking shitty day?” Today, I told her it was a mother-fucking fucking shitty day and I had a hit list with 3 people on it. She goes, “Oh, that’s a new one!” We then sat for the next few hours and went over what’s been going on. I guess a lot. I sat there and stared at you on the obituary she has of you, displayed in her office. Your big, blue eyes just stared at me. I told Dr. JoRo that this is so fucking unfathomable to me, that I felt like you were somebody else’s child, staring at back at me from your picture. You, that sweet gorgeous dead child, couldn’t possibly have been mine. No way. Nope. Never. Not happening. I am not the one in the room, talking to Dr. JoRo because that gorgeous creature of mine, staring at me with eyes that I used to get lost in, is fucking dead of cancer. Almost 6 months ago. Dr. JoRo said I looked tired. I told her, always. Which is why I was wearing my purple glasses tonight. To hide the dark circles under my eyes. Along with the red eyes, the tear filled eyes, the puffy eyes. Those purple glasses, can hide a lot.

I left Dr. JoRo to head back to check in with Katie. I sat in the parking lot before I left Dr. JoRo to gather my thoughts, first though. Then I had a mad texting freak out session with our favorite lovie. I think I wrote things like how lame and stupid it was that people think that because you died, I will go on to do amazing things. Like this is my job and purpose now, because you are dead. And who is the asshole that decided you had to DIE, for me to do these things?? I said things like if you had survived, I would have done even more amazing things. I wouldn’t have just been a mom, whose kid got cancer, who lucked out, and they survived, and then they just went on with their lives. I would have fought and fought and fought even harder, until a cure was found. With you here, on this earth, fighting with me. I think went on to say that this world is full of stupid, ignorant, and INCONSIDERATE, people everywhere and the next time I ran into one, I was going to punch them. And then I said I was going to move to Iceland. Alone. Where I don’t have to deal with asshole people who give you fake smiles, like they care. I have a radar for fake smiles, you know. And no tolerance for them.

I ended up getting talked down off the ledge. As always. The one person in my life, that can do this for me. I know you know why, Ro. You always have. But than I asked for a question to be answered. Because you know, my questions are always never-ending. I wanted our lovie to tell me why you had to die, for me to go on and fight this fucking fight. Our lovie told me, there would never be an answer for your death because it shouldn’t have happened. I sighed. A tear slid down my cheek. I know this. But I still struggle with this question, everyday. You know what I wish? That I were a really, really, stupid, ignorant person, who didn’t think about questions. Who just accepted answers. How blissful would it be to live a dumb life, because you just didn’t know any other way? Surely, it would be less painful? Not to question everything. So many questions that you are constantly feeling like you are trying to climb walls that don’t exist, only to never get to the top, and the walls leave your fingers bloody, shredded, black and blue. Fucking Bullshit.

It’s 11:11. I stared at the clock and said over and over again, ” I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you are safe. I hope you know I love you. I hope you know I’m sorry. I hope you know I wish it were me. I am sorry. I am sorry. I am so sorry. I am so, so, sorry for not saving you. I’m so sorry, I broke my promise to you.

And now I have to go, Ro. Because 6 months ago, at this time, we were cuddling up together while you were leaving this world. And I was listening to the sound of you breathing, while the oxygen blew next to your face. While Fernanda sang you Twinkle Twinkle Little Star but she didn’t know the words, so she had to Google them. Thank Ro, for fucking Google. Not God. Always Ro.

I love you. I’m sorry. I miss you so much that it feels like 6 years that we have been apart, not 6 months. I hope you are safe my little not spicy, monkey boy. Sweet dreams, Ro baby.

xoxo

A Barefoot Hike and Little Socks

Ro baby. Everyone is asleep. It is late. We had a late night out tonight. We went over to The Willets’ house, for dinner and to catch up and let the boys play. I so missed you tonight. I was so sad you were not with us. You loved those boys so much and used to always keep up with them, despite your younger age. I sat back and watched as L and Q, ran around with Gay’s three boys all night long. I used to have 3 too. Where are you? It feels so wrong to be the mom of only two boys now. I almost can’t take it. But it was nice to be with all of them tonight. I will say this for the rest of my life….. but we truly do have the best friends. Some are friends we have had for a long time…. like the Willets. Others are new and who came into our lives at the beginning of all of this, like Melissa and her family whom we had over last night. All are beautiful. After Melissa, David and their kids left last night, your Daddy goes, “You have made some really amazing friends through all of this.” I just smiled and told him I knew. I do know. I think about it all the time. It is another one of those gifts you have left behind. Our lovelies are everywhere. We had a nice time tonight as being with the Willets is calming to my soul. We love them so much. I love how laid back they are, funny, kind, and crazy. I love being surrounded by their boys and your brothers. I remember how much you loved being with them. I hope you were with us tonight. I think that you were. I was showing Gay how to put Pandora on her iPhone as she is new at all of that iPhone stuff and I’m an old pro. As I was playing with her phone, mine which was sitting on my lap, started playing music. Katy Perry’s, “Firework,” just started to play. I thought of you. I hope it was you. I think that it was. This life is so strange now. Nothing makes sense. I don’t know how it ever will again.

So, this WordPress Blog is so detailed. I have a whole stat tracker which gives me very specific details on how all of you lovelies are reading this blog. For example, on May 10…. a day after you passed away, Ro… I had 55,923 hits on this blog. On that one day alone. I check it out every few days, just out of curiosity. It tells me what search engine term people are using to find out about you. I get a lot of weird things, such as today… somebody searched this… “me and you baby dolls can drink.” Um o.k. Random and weird, but I guess I tagged Baby Doll before since that is what I used to call you and your website came up. These are the most popular search engine terms used from today.

rockstar ronan 1,438
rockstarronan 352
rock star ronan 93
ronan rockstar 54
ronan thompson 45
rockstarronan.com 43
rockstar ronan blog 43
www.rockstarronan.com 42
maya thompson blog 22
the ronan thompson foundation 21
rockstar ronan dies 16
maya thompson 15
rockstar ronan com 14
ronan thompson foundation

I get some funny things, some disturbing things, but most of all the two things that are searched the most are “Rockstar Ronan,” and “Rockstar Ronan dies.” The last one rips me to pieces every time. I often catch myself thinking, “Wait. What? Ronan died? How can that be true?!” It’s as if I am the blog reader, not the writer. Oh, how I wish that were true. My body than returns to itself, because reading those words truly does feel like an out of body experience. I have to remind myself that you, my beautiful son, did die of Cancer. I sometimes cannot even take reading this, so don’t ask me how I am able to sit here and write this. I still have no clue. One day, I will sit back and read all of this, but not today. I don’t know what I am waiting for, but as of now… it’s the writing that I need to do. The reading, can wait. I know there is no way I am ready to read what I have written in the past. It is going to be so painful and everything is still too fresh and raw.

Ro baby. I started that last night but had to stop due to the Melatonin kicking in. I had dreams about you. They weren’t happy, but they weren’t sad either. I don’t remember what you looked like, but I remember asking you questions. I asked you if you were scared. You told me, No. I’m glad for that. I hope you’re not scared as that is one of the things I worry about most. I still feel like I have just forgotten you somewhere, and that you are all alone in this big, big world. I miss you so much. I am glad I got to dream about you last night. It does not happen often.

I woke up this morning, knowing that I had to have a productive day, regardless of the day off that your brothers had from school and your Daddy has off from work. I got up and showered. I messaged back and forth a bit with a girl named, Katie, whom I have never met, but I have wanted to meet for some time now. She is just a friend on FB and owns an adorable kids clothing store. She is always reposting this blog on her business FB page and I’ve wanted to stop in for a while to tell her thank you. She told me she wanted to run some ideas past me so I said I would stop by this afternoon. I took Quinn with me. I walked into her store, Garage, and instantly fell in love. It is filled with all the things, your stylish self, would have gone crazy over. You loved to dress so sharp and stylish. I met Katie and felt like I had known her for years. We sat and got to know each other, while Quinn played and explored in her store. We went over an idea she has, which I’ll be talking about a little more once the details are finalized. I left her with a bunch of your bracelets, the Naughty and Nice version. I have to be careful about the people I partner up with, who want to help with your Foundation…. but everything with Katie felt right. And just as I was getting ready to leave, “Landslide,” by Stevie Nicks came on. If that wasn’t a sign right there, I don’t know what is. I started to tear up, and Katie told me I could sit and listen to it if I wanted. I told her that I had to go, because I knew if I did stay and sit, that I would be a uncontrollable mess. I left there with tears in my eyes but a smile on my face. Thanks for being there with me today, Ro.

I ran a few more errands with Quinn. Talked to NY Miss Macy. She has been with Tricia all weekend long as Trish flew to San Francisco for this long weekend to spend some time with her. I love that. I so wanted to go, but it is not the right time for me to be away from your brothers. It made me happy though, to know my beautiful besties, were spending some quality time together. I sometimes cannot believe that had it not been for you, that Macy would have never been introduced into our lives. She is a gift that I will treasure forever. For as big as the hole in my heart is now, I know you are trying to fill it up as much as you can with people like Macy. I know that you are still working away, trying to find ways to make me grateful and happy again. Your gifts come in so many different forms now. For that, I am grateful.

After finishing up my errands with Quinn, we returned home and the rest of the afternoon was spent doing things around the house. Checking things off my shit list, left and right. I picked up my friend, Julie, who lives right down the street and I took her Inferno Hiking with me. She loved it and almost threw up, but did not. She is a trooper:) I am also glad to know that I am not the only one who sometimes throws up after a hard workout. We got to the top and she was saying that it was kind of like Hot Yoga. I told her exactly, except it was much better:) I can’t wrap my head around being peaceful enough within myself to go back to Hot Yoga. I told her how Inferno Hiking to me, is very intense, yet peaceful. She completely agreed. As we were heading down, Mountain Mike, was on his way up. So funny that we always seem to be there at the exact same time, even though the time that I hike, is never consistent. We said our hellos and I introduced him to Julie. He continued up as the two of us then started on our run down the mountain. It was the perfect ending to this day as you know how hard weekends are for me.

Tonight was spent quietly around the house. Your daddy went to the office and Liam and Quinn are snuggled up together on the top bunk of their bed. I have been busy putting all of the laundry away. It’s taken me forever. I have been washing the same pair of your socks for months now. I refuse to put them away. I just wash them over and over. I carry them around with me. I can’t believe I don’t have your little feet here to put them into. I can’t believe how I wander around the house, doing busy things and often just walk into your room, expecting to see you playing. Your room is still the way it always has been. I don’t want to change a thing. Liam often plays in there. I like to write in there and sometimes sit and quietly think. I still cannot wrap my head around the fact that you are not here to play and sleep in your room. This all still seems like a bad dream, except I cannot seem to wake up.

Where are you baby? Are you playing with Esther. Please tell me yes. Tomorrow, it will have been 4 months since that sweet baby girl passed away. Your 4 months will be here soon as well. Please watch over Esther’s mama tomorrow. Well, everyday, really… but tomorrow extra close. I am worried about her. I feel such a need to go and see her. I promise I will get back East to do this soon.

I think this may be all for tonight, Ro. I have some homework to do before I see Dr. Joanne tomorrow. She took you with her when she went barefoot hiking this morning. I’ll send you the pic she sent me. I love you to the moon and back, baby boy. I hope you are safe. Sweet dreams, my love.

Dear lovely readers…….. Many of you have been asking about Ronan’s bracelets and where you can get them. I am almost completely out, but if you live in AZ…. there are some places that you can get them. Here are the locations::::

The Water Connection:::::::Nice Bracelets only::::: 3929 E Camelback Rd. Phoenix, AZ 85018

Green Cleaners::::Halle has Naughty only::::: 3912 East Camelback Road, Phoenix, AZ 85018

Garage::::Katie has both Naughty and Nice:::: 7144 E. Stetson Drive, Scottsdale, AZ

For my out of town peeps. I PROMISE, I’ll let you know when more are available. Should be later this week. Thanks for the LOVE and SUPPORT.

xoxo

The Twilight Zone

Ronan. Can you give me a reason to get out of bed today? Because I cannot find one. I’m still waiting for you to come and wake me up and tell me to make your extra cheesy eggies. I’m still waiting for you to ask me to put on “Mickey Mouse,” for you and sit on the couch and watch it with you. I’m still waiting and until you come back, I don’t know how I am going to function. The truth is, I don’t want to function and I don’t want life to go on. Life for me has completely stopped and that is apparent in the way that each day and night without you drags on and on and on. I’m trying to be productive. I really am, but it’s torture. Last night, I tried my best to be a really good mom to your brothers. They are so sad that the amount of energy I have to pour into being around them and making them happy is exhausting. I will forever be working extra hard to fill your void. That is a lot of work for a mommy. I never realized how much of a helper you were to me with your brothers. You filled them with all the happiness in the world and now that you are gone, I have to try to fill your shoes. It is not an easy job. They had Luca stay the night and Tricia and Macy came over. We piled in the car and took the 3 boys for Fo Yo. The boys giggled the entire way there. You would have loved it. All 3 of them sat in the very back, Macy sat in the seat in front of them and Tricia sat by me in the passenger side of the car. Your seat was empty. I saved it for you. Macy, Tricia and I wore our Spirit Hoods out last night just for you. It was silly fun and I needed the laughs. I can always count on those when your Auntie Macy is around.

I sat outside with those two girls and we cuddled on the couch and talked about you. I showed them the video of you on my phone from San Francisco when you were at the airport and you were yelling “Bye Macy!” to her. She hadn’t seen it yet. We cried. I showed them the last picture I took of us on Mother’s Day. You didn’t even look like yourself baby. Your daddy asked me to delete it but I’m not going to. I’ll keep it forever even though that s not the way I want to remember you. I know it won’t be, but I still need to keep that picture.

Ro~ I have no idea when I started that post above. All I know is it’s now a Saturday night. And the only way I know that is because tomorrow is the day that I am hoping really will not come. Tomorrow, is the day that I think your obituary comes out in the paper and I think it’s the day we have your services. I don’t know how I am going to survive tomorrow. I’ve already asked Fernanda to find my twin in life, so I don’t have to go. She told me that you would not like that; that you would know it wasn’t me there. I disagree. I think you would like it because you always liked how we used to break the rules together. It was one of our favorite things in the world.

I still cannot believe you are gone. I wonder if I will ever believe it.  This has got to be an episode of “The Twilight Zone.” Everything that goes on in our new world without you doesn’t make any sense at all. I’ am so mad. The one thing about all of this that nobody tells you about losing a child is how slowly time passes afterwords. I swear I don’t know how I’m going to get through life if it continues to be this way. It is so slow that it is painful. I hid in my bed almost the entire day today. I know it’s not how you would want me to be, but I cannot help it. I care about nothing. This is such an awful thing to say, but I don’t even want to be a mom anymore.  And that is my most favorite thing in the world. Everything takes so much energy now. Trying to fill the void that you have left behind is impossible but I have to continue to try to fill it for your brothers sake. Especially Quinn’s. He is wandering around like a lost little puppy. It makes me so sad, and I am trying my hardest to shower him with anything I have left; but it is not much and I know he feels it. He is stuck to me like glue. You would think this would satisfy me and fill me up, to feel all of the love he has for me. It doesn’t. I feel like I am in the bottom of a hole in the ground, looking up at the bright sky and trying to climb my way up and out of the hole. I feel like I’m going to suffocate 24 hours a day. I feel like this is never going to get any better.

All I want to do is sleep because at least in my sleep I get to see you. Even though the dreams I have of you are not happy dreams yet. I mostly dream about you dying. I wonder if this is part of the process. There has to be some psychology behind this. I hope to someday have sweet dreams about you. I miss you, Ro. I miss you every second of everyday. I would give anything to kiss your little lips again. To hold your little hand and look into your big blue eyes.

Your daddy asks me all the time if I need anything. You know what my response is? “Ronan.” I can’t help it. Your name just slips out of my mouth without me even thinking about it. I know he wants you just as badly. He hurts too. But even he admitted to me today that he knows that he doesn’t hurt as much as I do. He gets the whole mother and son thing. He is such an amazing man, that daddy of yours. I am trying to be strong for him and he keeps telling me what a great job I am doing, but I know I am not. But he tells me this anyway. He tells me this as he lets me sleep the day away and takes care of the house, the errands, the chores, your brothers, and his work. I am pretty much useless right now. I hope someday I can make this up to him. I hope someday I can go back to being a productive person of society. I’m not even existing. I’m barley breathing.

I don’t want tomorrow to come. I’m expecting it to be like an out-of-body experience. I told Tricia tonight just to physically get me to your service tomorrow is going to be an ordeal. I have a vision of running away and never coming back. I couldn’t do that to you though. I have to keep my head on somewhat straight for your brothers too. I refuse to fuck up their lives. I have to keep reminding myself that there are other people involved in all of this. I have to keep reminding myself not to be selfish but that is all I really want. Is to be selfish about losing you and to pretend like I am the only one hurting. I know that’s not the case. The sadness that exudes from the others around me is very apparent. It is so very hard for me to see as I only want to make everyone feel better and comfort those around me.

Tonight, my besties from high school all came in. I had them over to our house. Everyone was so sad and I was having such a hard time as I don’t know what else to do with everyone else’s sadness. So what did I do, you may ask? I know you saw me and watched us. I insisted that your daddy hook up Rock Band so we could play it. Otherwise, I’m sure we all would have wound up in my bed crying like babies and that was something I could not handle. Rock Band was a great distraction and I even broke out all of our wigs that we used to wear for it. There were some laughs and your crazy Aunt Macy is an amazing singer! She stole the show. Quinn played the guitar and kept getting amazing scores of 97%. He was so cute. Liam attempted the drums, but was soon not so into it so he ran off to play something else. All of the girls left to go back to their hotel and I will see them tomorrow. I’m so happy they are here, but so sad it is for this reason.

As we speak, Macy, Tricia, your Daddy, Uncle Jay, and Kenny are out in the livingroom playing Rock Band, again. I am snuggled in bed with Quinn and Liam is sleeping with Papa Jim. Nana is in your room, (a.k.a. the hot lava room). I’m tired tonight but restless as well. I wonder what you are doing wherever you are. I sit and think crazy things about how you watch me and are just trying to get back to me. Is it torture up there for you too because all you want is to be back with me?? This all seems like a fucking lose lose situation to me. How could you be happy like I want you to be when we are apart?? Nobody knows the answers so I have no choice but to try to figure them out myself. I’m just going to let you be my little guide. I promised you I’d never let go of your hand and you know I don’t break my promises.

I’m getting sleepy now. If you visit me tonight, in my dreams….. please no more scary ones like I’ve been having. Let’s take a trip to the beach together or something else. I don’t want to see you dead in a stroller in my bathroom. But you know what, if that’s the only way I get to see you, I’ll take it. It’s better than not seeing you at all. I love you, Ronan. To the moon and back forever and ever. Sweet dreams, baby boy.

xoxo

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms

San Francisco baby steps

Sitting on our plane back to Phoenix as I write this. This is something straight out of a movie. Yes, my baby has cancer. He is sound asleep beside me. As Woody and I watched him sleep, we held hands and talked quietly about all the decisions we have to make. I looked up at Woody and said, “He cannot die.” Woody looked at me and told me, “He’s not going to die, I won’t let that happen.” I then made him promise me. He promised as he squeezed my hand. Woody has yet to let me down in my life and I know he’s not going to start now. It is so unfair that my husband has to carry this huge weight around with him of something he has no control over. This ugly monster, Neuroblastoma, is trying to ruin our lives. But we won’t let it. It won’t win.

I left Phoenix with fear in my heart and tears in my eyes. Woody was trying so hard to make this a fun trip for us and I was trying not to get annoyed at him for keeping things light and cheerful. I tried my hardest to go fight him on having fun. Eventually, he won and our 24 hour trip turned into a really good time. We arrived to San Fran, grabbed our rental car, and headed to our hotel. We checked in around 8:30 p.m. and Woody headed out to one of his favorite record shops, which we happened to be staying right next to. He was like a little boy in a candy store. I stayed back at the hotel and Ro and I put on our P.J.’s and waited for New York Miss Macy to arrive. Ronan was so cute and excited. He kept staring out the window of our hotel, watching for her arrival. Soon, there was a knock at the door and Ro rushed to open it. There was our beautiful Mace, with her bright eyes shining and hugs all around. She came, once again with the best treats for Ronan. Including a bag full of candy, and Ronan’s favorite; candy corn! We all 3 cuddled up on our bed, played, laughed and talked. Woody came back with a bag full of old 45 records for his collection and some new C.D.’s. Macy was very excited about his findings and they started comparing favorite bands, concerts, etc….. Such a nice, normal night. For once, it was almost like the cancer cloud wasn’t hanging over our head. I notice this happens a lot when Macy is around. She brings such a positive light to our world… One that I don’t see very often anymore. She has the spirit of a child but the soul of someone wise beyond her years. When I am around Macy, I find all of our troubles disappear for the time being. Such a gift to me. Macy ended up going home around midnight and we all 3 curled up in bed and slept until 8 the next morning. One of my favorite things about Ronan is how he wakes up. It’s the same way everyday. It’s always him, touching my face, smiling at me, and saying, “Good Morning, Mom!” It is so simple and pure and he is always so happy. It’s as if he knows another day of life is here and he understands how precious each day on this earth really is. He is always so excited to wake up and see what the day has in store for him. Breaks my heart that most of his days are filled with hospital visits and doctors appointments. This doesn’t dampen his spirit though…. he knows how lucky he is to be loved as much as he is and surrounded by so many beautiful souls.

After we got up and ready this morning, Ro and I headed downstairs for breakfast. Macy soon joined us while Woody worked. As I was telling Macy about our adventure for the day, it occurred to me that she must come with us. We had a tour set up at Lucas Studios thanks to the ever so gracious, Lynne. Our tour guide, Chris, was expecting us at 11. Macy and I both looked at each other and knew instantly that she should absolutely come with us. I called Chris to make sure this was o.k. and he was so kind to say it was. The next thing I knew, we had totally hijacked Macy for the day and we were off and running to Lucas Studios. It was amazing! The studios are nuzzled in the middle of the city, but hidden in what I swear is its own little fortress. The views were to die for. We took our time strolling around outside, enjoying the sunshine and ocean air. We met Chris and he took us around for over an hour and a half. Ronan was in heaven, but I think out of all of us Woody enjoyed it the most just because he appreciated all the history behind it. Ro had a blast and was even left some gifts by Captain Rex himself. He was over the moon about his new light saber and toys. He finished off the day by chasing us all around and showing us his super cool Jedi moves. He had us all in stitches. Thank you so much, Lynne for this day. It will be one we will never forget.

After we left Lucas Studios it was time to head to UCSF to meet with Dr. Matthay. We dropped Macy off at her car and said our goodbyes. She may live in San Francisco now, but she will always be New York Miss Macy to me. I am so happy we were able to spend the time with her that we did. It meant the world to all of us and we can’t wait to go back for visits and to have her closer to AZ to visit us. Spirit Hoodies will reunite 😉

On our drive over to UCSF, I could tell Woody was as nervous as I was. We arrived right on time and sat in the waiting room for our consult. Dr. Matthay soon came out to greet us and we were taken back to a room to talk. I felt very comfortable with her instantly and I loved that when she went to examine Ronan, he went right to her as she scooped him up in her arms and set him on the table. We went over his history and his scans. She told us she did not want to give us a formal recommendation as far as his treatment goes because she wanted to look over his things a little more thoroughly. She is meeting with her board tomorrow and Ronan will be the topic of discussion and from there she should be able to tell us what she thinks our best options are. We talked today about what she thinks she would want to do and I fully believe in what she is saying, as she has the statistics and data to back it up. This woman means business. She eats, breathes, and lives everything Neuroblastoma. It is her life and I have no doubt she knows what she is doing. The question is, is it the right path for our son? We are still not sure, but are very open to listening to what she has to say. So, did I find the clarity I was looking for on this trip? Not really. I do know that our next step will be to go out to CHOP in Philadelphia to get their opinion as well. We are taking baby steps with this decision. Right now, we are still gathering all of our information and feeling things out. I am glad we went to San Francisco and we are not closing that door…. but I’m not getting the gut feeling I was looking for. That’s o.k. though because I feel as if San Francisco will lead us to where we need to go next. We would like to get out to Philly A.S.A.P. and then meet with Dr. Kusher at Sloan once again. The bottom line is, nothing will be decided until we do Ronan’s next set of scans. We just need to make sure we are fully prepared for our decision when the time comes depending on what his scan results show.

Yowzer. That was a lot of writing tonight. So tired. Beyond words, but I had so much to say. Love you all. Thank you to all of you for keeping up with us. Thank you to all of our beautiful friends for helping us through this. Thank you to my in-laws for taking such great care of my precious twins. We are so lucky, thankful, and blessed to have you all. Sweet dreams my dears.

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo

Magic Medicine, Day 4 and Day 5…. Round 7

What a beautiful, rainy day. My favorite kind of days. Being from the Pacific Northwest, I miss days like this so much. Ronan woke up happy as a clam, excited to know he was going home later this afternoon. We played in his bed for a little bit and then we went down to the cafeteria so I could get him his slurpee mix to put his oral chemo in. We came back to our room and talked to the nurse about discharge time and specific instructions as far as being back at the clinic tomorrow for the last day of cycle 7. Dr. Maze came up and sat with us for a while, played with Ronan, and we talked about the upcoming trips we are taking with Ronan to visit a couple of other hospitals. I had no idea, but his brother is the head of Anesthesiology at UCSF where we will be visiting on Wednesday. He sent him a message to let him know we were coming to the hospital to meet with Dr. Matthay. Ronan is excited to go to San Francisco and we have turned it into something really positive and exciting. I contacted somebody we were put in touch with whom works for Lucas Films. Lynne, has so graciously set up lunch on Wednesday over at the studios of Lucas Films and a little tour for Ronan. He cannot stop talking about going to visit Star Wars and New York Miss Macy, who just moved to San Francisco. It is going to be a short, productive trip. I am of course, over the moon about getting to see my love, Mace 🙂

I started this post yesterday but didn’t finish it last night due to falling asleep at 9:00 and sleeping all night long. It’s a miracle! I have not done that since before Ronan was diagnosed! My dreams were not even that horrific. I, of course, dreamt about Ronan and his cancer…. but my dreams were more peaceful than they have been in a long time. We went home yesterday around 3:30 and we are now back at the clinic for Ronan’s last day of this round of chemo. Liam and Quinn have the day off from school and Quinny is here with us while Liam is with Mimi and Papa. We will be finished here around 3 and Quinn is being such a good little helper. It was fun to introduce him to all of the people  here who are such a part of our lives now. He hears Ronan talk about them all day long and I think it was good for Quinn to put the faces that go with all the names. It was also good for Quinn to see what we do on a day-to-day basis while we are in the clinic. He likes to know what is going on with Ronan. Ronan is of course over the moon to spend the day with one of his brothers.

Fernanda came by the clinic and dropped me off a coffee (which I proceeded to knock over and spill) She called that, good luck. I of course chopped it up to nerves. I’m scattered today; nervous about meeting with the doctor in San Francisco. Dr. Eshun already told me that he spoke with Dr. Matthay and she is going to suggest we do MIBG treatment as soon as possible. I already knew this. Everybody is going to be biased in the way they want to treat Ronan’s cancer. But nobody really knows the correct answer. This is beyond fucked up to me. The fact that Woody and I are going to have to make a choice in regards to Ronan’s life and part of it is going to have to be based on a leap of faith. No parent should ever have to be put in that situation. I’m not one to get political one here because that would stir up too much shit, but HELLLLLLLOOOOO WHITEHOUSE!!!!!!! With all the money that you are spending on the world….. why don’t you throw a WHOLE bunch of it at Childhood Cancer so we can actually find a cure for this horrific disease that is killing MILLIONS OF CHILDREN?!?!?!?!?!?! They are our future and with the lack of funding, you are throwing away the lives of amazing children who would make this world a much better place.

I came across a quote by Mark Twain today and it made me smile. “There are three kinds of lies: lies, damn lies, and statistics.” I said at the beginning of all of this I was going to stop listening to the statistics for Ronan. I stand by what I said. He is not a statistic, he is my child. Many people do not want to associate cancer with children. It is just an unthinkable horror. It’s easy to dismiss the idea by saying, “This will never happen to my child.” Unfortunately, it happens more often than we’d like to believe. According to the National Childhood Cancer Foundation, one in every four elementary schools has a child with cancer. While many children are cured, there are still many children who will die.

When you lose your parents you are an orphan. When you lose your spouse you are a widow(er). There is no name for a parent who loses their child because it is just too unspeakable.

Why is the happening to my perfect little boy? Because there was never a boy born who is more beautiful in this world; so now he has to pay the price? I want an answer for something I will probably never know and it’s not fair. I want someone to be mad at and someone to blame, but that person does not exist. If I can’t have something tangible to blame, I want a cure, god damn it! I don’t want to have to put the life of my child on the line and trust my instinct in choosing his path. This is beyond unfair. It is sick, inhuman, and cruel. He does not deserves any of this! NO CHILD DOES! For all of you out there who are compassionate human beings; and I know you are because you continue to read this blog and pray for Ronan….. I dare you to come and spend the day at a hospital full of kids who have cancer. If your life is not affected, if you can walk away from all of this and never look back, you are reading the wrong blog. For those of you who are already doing something, big or small….thank you. The time is now to make a difference and your wake up call is here. It’s time to do something, whether it be to volunteer, to make a sick kid smile, or to help in raising awareness in any way possible. I wish I wasn’t getting my wake up call in life because my child has cancer. I wish I had someone telling me to do something. I would have listened if I had known this world existed. I lived a blind life full of a false sense that everything was perfect in the world, because my world was perfect. WHAT A BIG, FAT, LIE.

An innocently good day turned into a not so good night. Let’s see….. I threw up the one little thing I tried to eat for dinner, went to try to get gas in my car (had to leave due to not being able to get the gas to pump due to my head spinning) and then went to Target were I proceeded to abandon my cart due to almost having a severe panic attack in the store. Fernanda called just as I was walking out and I started bawling to her. She was like “What at the fuck are you doing trying to get gas for your car?” “That’s what we are all here for!” You know you are in trouble when getting gas seems overwhelming. In the mist of my bawling in the car before I left the parking lot I texted my Mr. Sparky eyes whom is always telling me that I am doing a great job at handling everything and I need to stop being so hard on myself. I said to him, “People that are doing o.k. do not have to leave in the middle of shopping at Target because they cannot focus on what they need to get. I am not o.k. and I cannot believe I have to make a decision in regards to my son’s life when nobody knows the right answer.” 2 minutes later, he called and basically talked me down from the ledge and sat on the phone and let me cry. He reassured me as he always does that we are doing everything right in our power and we are going to make the best decision for Ronan. He then told me how I am alright, I had just had a shitty day and tomorrow will be better. He also told me that anything I needed at Target, I really didn’t need anyway. He calmed me down as he always does with his wisdom and words. After talking to him, I was able to go and get gas for my car without any problems.

I came home to a hectic house of boys’ gone wild. My 3 little guys are so happy to be together, that it is hard to get them calmed down for bedtime. Lots of laughing and playing just as it should be.  San Francisco tomorrow. One more piece of the puzzle to put into place. Will it fit or not?? Only time will tell.

G’nite my loves. Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for being there for me tonight. Your words helped me through the night. I love you.

xoxo