New York Fuckin City and Cancer is an Asshole

 

 

Ronan. I’m here. Back to the place where we were basically told there was nothing left we could do for you. Back to the city that was supposed to heal you. Well it didn’t. I’m hoping it will heal me a little I guess. I’m not giving up on this city. I’m not going to let it make me so bitter and sad so that I can never return here. I’m here and this city is still as lovely as ever. A perfect place for an insomniac like me.

I’ll admit it, I was a little nervous and sad to leave tonight. I had a moment when I was saying goodbye to your daddy and brothers before went through the security line. I gave them lots of hugs and kisses. Liam was being so stoic and brave about me leaving. Quinn had tears running down his cheeks. Your daddy looked sad as well. It killed me to leave them but as I have said before, I don’t have a choice. This is something I need to do. As I was sitting in the airport, waiting for my plane I thought to myself, “What in the fuck are you doing? You are leaving everything and everyone behind that you love to go to a big city where you know, nobody. Who in the world do you think you are?” Then I remembered, I am your mama. I can do anything. I may not know what the fuck I am doing; but I’m not going to stop until I figure it out. I owe this to you and I owe this to myself. I told you I died when you died. I know this. I have to do things like this in order to live again. I don’t know why it is that you wanted me to come back here again and at this specific time, but your little voice in my head has been too loud for me to ignore. I know you have a bigger plan for me and I know this is part of it. So here I am. I’m here and listening to you in every way possible.
Hi little bug. I fell asleep shortly after what I had written above. It must have been about 5 a.m. when I finally passed out. I woke up around 9, made some phone calls, showered and headed out into this big, beautiful city that I love so much with no destination in mind. I walked for a few hours. It’s cold, crisp, and the city is covered in snow. I didn’t go anywhere special but I just let myself get lost in my surroundings. I called your brothers and daddy to check in. I didn’t have anything specific planned but some things came about anyway. I met up with a lovely man named Scott. He is one of the men who started up Solving Kids Cancer which is based out of NYC. I touched based with him a couple of months ago to let him know I was coming out here and that I would love to meet him and pick his brain. So we ended up meeting later this afternoon. It’s so strange this little shitty fucking club of ours that we now are a part of. As soon as he walked in, I got up and gave him a hug. I have never seen this man before but I felt like I’ve known him forever. We slipped into an easy but difficult conversation. The one where you sit across from this stranger and you have no guard up and no filter because you notice he has the exact same sad eyes as you. So you sit and talk about your dead children, your alive children, your friends, your life before and your life after. No topic is off-limits. You sit and talk about how your kids got the short end of the stick and you say the word fuck a lot. You talk about how you know you have no choice but to change the face of childhood cancer. I felt myself breathe and exhale easily today, while in Scott’s company which I never do. He has so much love for his little boy, that was taken away, and I know he is going to fight this fight as hard as I am. He is not going to stop until things start changing. It was nice today to feel like I was not alone in this big fight. It was a day that I very much needed and I appreciated it so much. He let me pick his brain which I loved. He is smart and you know I always appreciate that. He totally has his PH.D in this childhood cancer thing. I’m sorry he does. I so wish he did not. I wish that for both of that but as we both know, wishes don’t fucking come true.
After my afternoon, I ran back to the apartment to change as my friend, Kelly, told her husband I was here and he texted me to see if he could take me to dinner. She is still back in Oregon and Derrick is living here while Kelly gets things packed up for their big move. I have not seen Derrick since the summer we spent with them, over in San Diego. The summer where you and their little girl, Grace, fell in love. I’ll never forget that summer, Ro baby. You and your little tan beach body. You and Gracie spent so much time together playing and loving on one another. It was such a good summer. It was good to see Derrick. He and Kelly have been such good friends. So supportive from a distance. We had a nice dinner and he showed me where he works now at MSNBC. We got caught up and talked about you a lot. Seeing him made me miss Kelly and our old life, so much. Our old life when you were here and healthy. Derrick sat and told me how strong I was to keep going on and pushing forward. He told me there is no way he would be able to do what I’m doing. I just told him that I don’t have a choice. I’m not going to just curl up in a ball and not fight for you and all the other babes out there who are dealing with this or who may be dealing with this in the future. I’m not here to sit back and do nothing. I’m still your mama, Ronan. I’m not brave or strong or a fighter. You are. All I’m doing is being your mama, in the only way I can now. After Derrick dropped me off, I changed my clothes and headed out for my most favorite thing in the world. My dark and dangerous Central Park run. It was so cold and the entire park is covered in snow. I ran a fast paced 6 miles. It felt so good it gave me a chance to clear my head from the things that had happened during the day. I took some time to think about you, a lot. Like I always do.
GOD FUCKING DAMN IT. I have not been on the computer at all. I have purposely been avoiding it. I just got on my Facebook to check my messages. I just found out that Coach Bemis passed away. The dad of the 2 most beautiful girls who came in to get some Fuck You Cancer bracelets a few months ago. I just happened to meet them and said hello.  It was there that they told me that their dad had been diagnosed with Stage IV Lung Cancer and he didn’t even smoke. I have been following his story even since. I didn’t know things had taken a turn for the worst so fast. I’m so sorry girls. I wish I could hug you and take this all away. I’m not going to say anything stupid like, “He’s in a better place,” because I fucking hate that. All I can say is that life is not fair. There are too many good people who are taken away and it will never make sense. All I can do is scream, “FUCK YOU CANCER!!!!!!!!!!!!!!!!!” for you. And cry for you and hope that if there is something else beyond this world that your dad will get to hang with Ronan. I don’t know what to make of any of this. When in the fuck did life get so hard? I mean, I know life is hard…. but this is beyond hard. This is beyond the petty everyday bullshit that people bitch and complain about. Try outliving your child. And Coach Bemis. He has a family that now is supposed to sit here and figure out how to go on without their dad? The most beautiful family. Who can justify this? You can’t. It’s just the fucked up life that we live in. You can’t make sense of any of this so people need to stop trying. Sometimes, there just are no answers. For as much as we want them, there will never be an answer that can justify any of this. I’m sorry Makenzie and Brianna. So fucking sorry.
Ro baby. It’s Monday now. I got up early this a.m. to go meet up with another Mama, Gretchen who lost her little boy, Liam to Neuroblastoma too. Just a year ago, today. Guess what else I found out about Liam? That he was born the day after you were. He was born on May 13th. I know that wherever you are, that you are friends. He sounds so much like you. I got to give Gretchen the hug that I’ve wanted to give her for so long now. I got to meet another person who has the same eyes as me. She started up Cookies for kids’ cancer. She is taking her pain and channeling it into something so unbelievably beautiful. All because of the love she has for her child. And because she knows that she does not have a choice because when the day comes, that she does get to see Liam again, she is going to be able to tell him how she did make a difference in the lives of others. How she did stand up and fight for all of these other innocent kids. How she stood up and fought for him and she never stopped just like the way, I refuse to stop for you. I’ll never stop fighting for you, Ro. You give me the strength to do this. What choice do I have? This is my way of taking care of you now. I’ll always be your mama. That will never change.
So, now I’m on a train to Washington D.C. I got invited on a little adventure that I jumped at the chance at all because of you. I am taking you with me, just like I took you with me everywhere. Oh, how we loved our little adventures so much. It’s going to be a good one. I can feel it. This trip is exactly what I needed. It’s been a whirlwind of calmness and craziness that I love. That I’ve needed because I tend to get stuck in a rut in AZ. I often feel like I can’t breathe there. I am really glad I listened to you and fought for this trip. Thanks for being such a constant, strong voice in my head.
I love you baby doll. I miss you so much. I hope you are safe.
xoxo

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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

8 Months so a Skydiving we will go, Ro.

Ro baby. I didn’t die today. I really thought I was going to. I woke up this morning, knowing what the day had in store. I didn’t dare tell your brothers what I had planned. Your daddy chose to ignore my danger day and left the house the way he always does; by kissing me goodbye and telling me to have a good day. We had talked on Thursday night about the skydiving I had planned for Monday. Well, we didn’t actually talk about it…. I more just told him I was doing it. He said to me, “Don’t you think we should sit down and have a discussion about this?” I said, “We’re having a discussion now. I’m going skydiving on Monday.” He said he didn’t want me to go. That I could die. I told him that I could die crossing the street. He didn’t think that was a very good argument. He made his feelings known that he didn’t like the idea and we left it at that. We didn’t talk about it again until after I made it safely to the ground today. Your daddy knows how I am, once I get an idea in my head. There is no stopping me. Especially not now. Your daddy knew I was a handful before losing you, Ro. Now the word handful has taken on a whole new meaning. Yowzer. At least I keep things spicy, right baby doll;) Extra spicy just for you.

I woke up  this morning like it was just another normal day, without you. I got your brothers ready and Mandy Bee came over to help me as she was my danger crusade sidekick for the day. She packed your brothers lunches while I ran around the house, trying to get ready. I knew I wanted to take you with me, but there was no way I was going to bring your heavy locket, skydiving. I went and got a small ziplock bag and opened up your Urn. I put my hands inside and went to grab some of your ashes. I grabbed something hard instead. It looked like one of your little bones. I dropped it back into your Urn. I looked down at it, didn’t want to touch it, but then thought to myself there is a reason I was supposed to touch that today. I scooped it up and put it in my little baggie and zipped it up in the pocket of my coat. I didn’t throw up, but paced back and forth, crying instead. I quickly pulled it together so I could get your brothers off to school. I didn’t want them to see me so upset as they would have worried. We hopped in Mandy’s car so we could drop off Liam and Quinn. I hugged and kissed them both and told them how much I loved them and to have a wonderful day.

As we drove off, I got really quiet which is always the first clue that I’m a mess in my head. My silence screams my pain. Mandy asked what was wrong, besides the obvious. I didn’t answer at first but stared out the window instead. After a minute or two, I pulled out your ashes told her the story and starting bawling that I couldn’t believe you, my baby, were in a plastic fucking baggie. She just held my hand, listened, cried, and we talked about how fucking fucked up all of this is. What else could she have said? Nothing and she knows that. That’s the thing I love most about that Mandy Bee. She never tries to make things better with bullshit words. She knows she can’t so she just lets me be. We drove to Eloy and it was mostly a quiet drive. We both started to freak out as we got closer, talking about how we couldn’t believe we were going to jump out of a plane. I told her I fully expected to die. She told me I was not dying on her watch so to shut the fuck up. I just laughed and told her that I thought I was going to and I was o.k. with that. As soon as we started to get closer, we looked up and saw about 10 parachutes falling from the sky. The excitement started to kick in. We checked in, watched a short video and signed a ton of paperwork in regards to our life. Or our death. We sat and signed our lives away without thinking twice. We went and got suited up, met our partners in crime and listened as they gave us very little, but informative instructions in regards to tandem jumping with them. I guess knowing less is better so that way you don’t over think it. I chose to not over think anything at all today. I only thought about you the entire time.

The guy I jumped with was named Jason. I liked him instantly. He was young, tattooed, a great smile, and the icing on the cake was his beautiful blue eyes. I instantly felt like you were there, holding my hand, once I met Jason. As you yourself, had hand picked him out for me today to jump with because you knew he would keep me safe. I know this was one of the reasons why I didn’t ever feel scared or panicked. I felt a peacefulness and a calmness that I have not felt in so long. We waited our turn and climbed on board of the plane which held about 20 people. Up and up we went. It was SO HIGH, Ronan. I had one moment as I was looking out the window of the plane that I thought, “What the FUCK am I doing?” But then I remembered that today, was your 8 months. Today, I remembered that it has been 8 months since I last kissed your lips. Today, I remembered that because I have faced my worst fear in life, that I have have nothing to fear anymore. 13,000 feet up in the air we went and I could have not felt more content or calm. My head has not been this quiet since before losing you. There were no screaming voices today in my head. Only pure silence. Jason was preparing me to jump. He was strapping me to his body and as he was putting me in-between his legs, he said something that was so inappropriately wrong, that it made my entire day and night because it was that raunchy, perverted and hilarious. It made me forget the fact that I was about to plummet to my death. I told you I knew you had picked just the right guy for me today, Ro. You know my sense of humor so well. I looked at Mandy as I was getting ready to jump out of the plane, first. She screamed,  “I LOVE YOU!!!!!!!!!!!” I looked back at her, flashed her a smile and said, “I LOVE YOU MOOOOORRRRREEEEE!!!!!!!!!!!!” Jason stood me up at the open door of the plane and told me to look up. ONE, TWO, THREE!!!!!! We jumped. We fell. We flew. We became one.  I screamed, laughed, flipped off the camera man who was taking a video of the entire thing. I screamed “FUCK YOU CANCER!!!” I yelled, “I LOVE YOU, RONAN!” We fell, in the sky without our parachute being open for at least a minute. It was the most amazing feeling I’ve ever had, besides being your mama. I wasn’t ever scared. I wanted to free fall, forever. It  didn’t feel like I was falling from the sky. I felt like I was floating. I felt closer to you today, then I have since you’ve been gone. Jason pulled the parachute after a minute or so. After that, we were able to talk while we floated all around in the sky. He pointed out the mountains in the horizon. I asked him how I did and he said amazing. I told him all about you and how I was doing this, for you, because of you. Because you’ll never have the chance so now I have to do things like this, for you. If you were still here I would have NEVER done this. But now I wonder why not? It was the most freeing feeling that I’ve ever experienced in my life. I’m only sorry it took you dying, for me to do something like this. The landing was easy, and Mandy Bee was waiting for me. She came running over, jumped in my lap and kissed me smack on the lips. It was one of the top 5 BEST days, of my life.

Today, I didn’t feel like I was buried alive. I didn’t have a hard time breathing. I felt happy. I felt fearless. I felt free. I said to myself, If I can jump out of a plane for Ronan, I can do ANYTHING. I meant that today. All I wanted to do today was to get back into that plane, and jump again. I jumped up and down with Mandy on the ground, instead. My Mandy Bee who is afraid of heights, Ronan. Afraid of heights, but didn’t think twice about going with me when I put this out there about a month ago. My Mandy Bee that you never got to know, but it is because of you that I have found my fearless soul mate in life. The friend who holds on to me the tightest when all I want is for her and everyone around me to let go. The friend that is not scared of my dark side that often exists. The friend who doesn’t judge. The friend that trusts me, embraces my crazy ideas, and thinks I am capable of anything and everything. Thank you for her. Thank you so very much. You have no idea, how many times she has saved me. I don’t know how I would be doing any of this without her. I am so glad I don’t have to.

After our jump of death. Or jump of life…. whichever you prefer… we went and grabbed lunch at your favorite place, Chelsea’s Kitchen. Mandy Bee also went grocery shopping with me, which you know I don’t do well with. I would rather jump out of a plane any day then tackle the grocery store. It helped having her there so much. I’m learning that I do indeed need help with things and for now, grocery shopping is one of them. I’m learning that it is still o.k. to ask for help, especially now that you are gone. It’s too hard to go there alone and without you. So Mandy shopped with me. We rode on the carts like I would have done with you. Remember how you would sit in the cart and I would push you so fast and crazy? You would giggle with fits of laughter. I pushed my cart fast and crazy for you today, only I was the one riding on it. I’m sorry for that. I’m sorry for everything. I’m sorry you got cancer and I couldn’t make you better. I’m sorry I have to live without you. But thank you for letting me live today and making me feel like it might be o.k. That it won’t hurt so badly, everyday without you. I know I can’t jump out of a plane everyday to have good days like this. I hope you can give me some ideas on how else to ease the pain. I’ll be here waiting to hear from you.

I went for a 6 mile late run tonight too. The moon was so full and beautiful. I yelled up at it that I loved you. I know you heard me. I know you hear me all the time. I love you baby doll. Sweet dreams. I hope you are safe.

xoxo

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Hell is empty and all the Devils are here

Ronan. Cancer is stupid. And people are stupid. I try to ignore the stupid people of the world the best I can but sometimes they get under my skin. I try not to let them but as it turns out, I’m still human. For as dead as I feel I guess I’m really not because I am still able to feel. I wish I really were a dead zombie. Then I wouldn’t be bothered by these stupid, ignorant people. I would just rip their hearts out and eat them and then maybe they would be able to feel a quarter of the pain that I feel on a daily basis. Only in Zombieland, right buddy. Sometimes the stupid people of the world say stupid things like, “You know, there are other mothers out their who have lost children. You’re not the only one.” My reply is, “Really? No shit, asshole.” Please hold on a minute while I punch you in the throat. It is as if they are trying to compare my pain, to somebody else’s. Or justify it by saying there is someone else out there, who has it worse. I am not ignorant. I am aware of the other people out there who have lost their children. But guess what? They didn’t have a Ronan. So there is no comparing or justifying. You were mine and therefore, nobody else knows what this is like. I don’t care if they too, have lost a child. This pain is my own, this sadness is my own, this experience is my own. I would never tell another parent, “Oh, I know exactly how you feel.” Because I don’t. I understand some aspects of it. I can relate but to each his own. I am learning to be respectful of that for others going through this process. I’m still new at this game but this is something that I have learned. Unless you had a Ronan, you don’t fully know.

I survived Christmas? I survived Christmas. It was brutal. I took some time in the morning, before I got up and just cried for you. After that, I was able to go downstairs to watch your brothers open gifts and enjoy Christmas the way 8 year olds should. It was as nice as it could possibly be. All that mattered is I was able to get out of bed and watch as your brothers smiled, giggled, and laughed. I lasted a couple of hours but then the pain became too much and I had to retreat up to my old bedroom where you and I spent all last summer cuddling and whispering secrets to each other. I passed out for a few hours. I dreamed of you. This is the second time in a month that I have seen you in my dreams. They are never pleasant and it is always the same theme. You looking at me. I’m trying to save you, but I can’t. I know you are dying, but you always look peaceful. Thanks for that, little man. My heart was extra heavy on Christmas for another mama. Another mama who wrote to me a few days before Christmas to tell me thank you. I was sick to my stomach after her email. I don’t want a thank you from another mama because her baby girl died of Neuroblastoma. She died on December 7th, this year. This mama told me it was because of what I had written about you after you passed away, that she was able to tell her Charlotte all the things she wanted to say, right before she died. I don’t remember what I wrote about you and I don’t want to know. I guess I am glad it helped somebody else although I wish I didn’t have to. I wish I could give her Charlotte back. I told her I was sorry. I wish I had some wise words for her. I didn’t. Sorry was the best I could do. She told me how she just wants to be with Charlotte. I told her I knew. Oh, how I know.

Yesterday, I spent the day in Portland with your daddy. You know how Portland is one of my favorite cities. It was a nice day. We grabbed lunch. I ate a bit of soup but that was all I could manage to keep down. We talked. But not about normal things anymore. Our talk revolved around everything cancer. I played the game that I am so good at playing now which is we didn’t choose the right treatment. If we did, Ronan would still be here. Should we have done this? Should we have done that? We picked the wrong treatment for him. He insists that we did not. He insists the outcome would have been the same, no matter what. I still don’t believe him. But I guess I have little credibility due to being the irrational broken-hearted mama. I don’t need credibility though. I just need someone to figure out this fucking disease. I need the doctors to get a clue as to what it is they are doing so little kids don’t have to sit around playing russian roulette. I’m not stopping until this changes Ro. I promised you that. After the talk about you we moved on to other fun things like Coach Bemis. The coach in AZ who has Stage IV lung cancer and he is NOT a smoker. We moved on to Katie who is the beautiful 15-year-old girl with Rhabdomyosarcoma. We talked about Charlotte, Will, Dr. Sholler, Dr. Mosse, etc….. We will never be the normal couple again who goes to lunch and talks about the weather. We both agreed that this world is fucked. But we left there, holding hands and we’re not letting go. We know what we have to do.

We walked the streets of 23rd for a while. We passed a boy playing his guitar. He was really good. He had his guitar case open so people could throw money in it. He looked to be around 15. He had a sign sitting in his guitar case. It wasn’t the normal sign that read something like, “Help me, I’m hungry.” It simply said, “Help Fight Boredom.” I smiled and laughed as we passed this boy. I looked at your daddy. I had your daddy give me a couple of bucks and I turned around and walked back to this boy. I threw it into his case as well as your little card and your “All good things are wild and free,” bracelet. He said thanks and continued to play. I caught back up to your daddy and we started to walk. I noticed the boys’ guitar playing had stopped. I turned around to watch him read your bracelet. I watched from a far as he read it. He looked up and waved to me, the girl in the yellow coat. I waved back. That boy made me happy today. He reminded me of you. I hope he never gets cured of his boredom. I hope he remains curious to the world and follows his dreams. I hope he has a mom and a dad who know how lucky they are, to have him. I hope he is safe. I hope he is o.k. I hope he is wild and free. This is what I hoped today, Ronan. It felt nice.

Dear lovely little blog reader: I will address your questions but only because you have pissed me off and I am feeling extra spicy today. Here goes dolly.

Why is it ok to take Ambien, but not an anti-depressant? I think you are being slightly hypocritical. You need something to get out of the abyss you are in – other than your youngest son, which, while totally un-fucking fair, will not happen. The fact that you didn’t care if your older sons’ had winter coats speaks volumes. Christmas Eve and you hadn’t bought your twins any presents??? You need some help. You think you might need to check into a hospital…what do you think they are going to do there? I’ll tell you, they will load you up with anti-depressants. They will monitor your food intake and your vomiting. You will lose the control you so relish. The choices will be taken away from you.

You need to talk to a physician. Your constant vomiting is obviously not healthy – don’t your other sons deserve the same mom that lovingly helped her youngest son? While I’m not suggesting you are bulemic, have you ever read what constant vomiting does to your body, your throat, your teeth? Or is this part of your “danger” crusade?

No, I have never lost a child, so I’m sure that will make you totally disregard my opinion, but do you ever re-read your posts? You are on the edge and if you don’t get some perspective, you are going to fall off. Where will that leave your already devastated family?

It is NOT o.k. to take Ambien. For me anyway. I think this drug is the devil. Obviously you are a new reader and have not read all of my posts, therefore you are the one being hypocritical. I talk about this all this time. I hate myself for the fact that I sometimes have to take this drug in order to sleep. Not all the time, but it is during the times that I am struggling the most, when I know the lack of sleep is going to make the crack, so I give in and just take it to get some fucking sleep. It makes me feel mentally weak. It makes me feel like a loser. It makes me feel a lot of things that I hate but sometimes I need a break from the pain and sleep for a solid 6 hours seems to help. This is not always the case and I am proud of the nights that I don’t have to take anything at all. I try every night, not to take that drug but as I said before, sometimes I need a break.

Why is everyone so bothered by me not getting on the antidepressant band wagon? SHUT THE FUCK UP!!! If it helps other people, great! But it’s not for me. I did the anti depressant thing for about 6 months and it only made things worse. I have tried it, and I didn’t like it. END OF STORY. The abyss I am in is called my son just died 7 months ago. I am so sorry you are so bothered by this inconvenience. I am so sorry that you are so bothered by the fact that I didn’t care about my twins’ winter fucking coats and Christmas presents this year. Lady, are you high?!?! Are you on crack? Are you even a parent? Probably not. If you are, I am scared for you. The fact that you think the above things above are a big deal, in the grand scheme of things, disturbs me. I’m a good mom. I know this. I will never second guess this and anybody that truly knows me, wouldn’t either. Even if I didn’t go out and buy winter coats or Christmas presents this year. I think I deserve a fucking hall pass for this first Christmas, don’t you? I don’t care if you do or not. I’m taking it.

And no. I do not re read my posts. For obvious reasons. Maybe you should go back to the beginning and read them all though, before you judge and spew your words of concern. I’m going to go now. I’m off to go skydiving while I throw up my breakfast to continue my “danger crusade.” Opps. I didn’t eat breakfast today which must mean I’m anorexic. Clearly. I am aware what this constant vomiting does to my body. I’m not proud of this but it’s not something I can control right now. I guess having a dead son will do that to you. I hope the hospital that I am going to check myself into, can bring him back so it will stop. Have a lovely day, thanks for your concern but I think you need to go back and reread what you wrote and try a little harder to put yourself in my shoes. This is not a dog we are talking about, dying. It is a child. It was my son. It is not something a fucking pill can make better. Or a hospital. G’day lovely little blog reader.

Ro baby. I love you. To the moon and back. I miss you. I hope you are safe. I hope you are wild and free.

xoxo

Mandy the Owl, Ben with the Bald Head, and Bret the Rockstar

Ronan. I guess I’ve had a hard couple of days. So many things have happened. Everything seems to be moving so fast, yet so slow. I’ll have to catch you up on some things since it’s been a couple of days since I’ve written to you. I drove up to Sedona on Tuesday to see Dr. JoRo. I could have seen her here in Phoenix, later this week but I honestly like the drive up there and back. It’s my quiet time in the car. I don’ talk on the phone. Sometimes I listen to music. Sometimes I don’t. I am always thinking of you. I cry a lot. Here in Phoenix, I feel like I am constantly on the go. It’s a race that often leaves me exhausted and I don’t get to sit and be quiet much. I am still trying to find that happy medium of grieving for you and letting my self being absorbed in the pain; without slitting my wrists. Sometimes it hurts so much that I’m scared to sit and just let myself just be. Sometimes I don’t think I can handle the pain. I worry about what will come of it. My mind can slip into a very dark place, with the blink of an eye.

My time with Dr. JoRo was long. Grueling. Good. We talked about everything. I always find myself staring up at your pictures a lot that she has on her shelf of the thousands of books that she has read. I cried a lot. She cried too. We listened to a song together as the tears slid down both of our cheeks. There was a lot of crying. There was a lot of fucking fuck words used by the both of us. She is helping me with a little research as far as trying to figure out who we want to help fund treatments for Neuroblastoma. I don’t want any of this money to go towards a fancy hospital building and advertising. I don’t want this money to go towards building a wing of a hospital with your name on the fancy door. FUCK FANCY. This money has to go directly to the RESEARCH aspect of this disease. This money that we are trying to raise will go to the team that we believe in with our whole hearts and souls. The team that we feel will up the survival rate and ultimately, find a cure. This has to be a doctor/facility that is going about things differently. Because obviously what they are doing for this disease is NOT working. But they keep doing the same thing, over and over. If you survive Neuroblastoma, it’s by luck of the draw and nothing more. I have 2 doctors I am interested in. I’m putting their names out there tonight. Dr. Giselle Sholler and Dr. Yale Mosse. I know Dr. Mosse from Chop. She is the one who has a little piece of my heart due to her passion for finding a cure for the nasty disease. But her hands are tied by the COG. I am not a fan of the rules she has to play by. If anybody wants to throw info my way about Dr. Sholler, or anyone else, feel free to do so. I’ll take all the help I can get. I want to meet with them both. I want to see the evidence behind what they are doing, and why they think it is going to work.

Dr. Jo knows you shouldn’t have died. But you did. She is going to help me every way she possibly can. She is doing more than just saving my life. She is going to help me fight this Childhood Cancer nobody gives a fuck, BULLSHIT. We talked about your Foundation. She tried to tell me I didn’t have to do any of this if I didn’t want to. I looked at her, gave her a half-smile and told her that it wasn’t my choice anymore. I told her I am not choosing to do anything. For me, this is not something that I am choosing to do. It is something I HAVE to do; just like I have to breathe, to stay alive. She looked at me and said she knew I was going to say that, because she felt the exact same way, 17 years ago when her baby girl died and she was locked in a closet, going through the Yellow Pages, trying to find someone to help her get through losing her baby girl. There was nobody. She almost died from the pain. She swore to Chey if she lived through it, she would change this and help other parents. The MISS Foundation was born because of her pain and because she survived. She survived, Ro. And now look at all the people she is here, helping. She is saving the lives of so many parents who feel so alone. She is a walking billboard for surviving one of the worst thing that can happen to a person, but she still managed to come out the other side even more beautiful than before. Stronger. Smarter. Wiser. It changed her in a way that a person never wants to be changed. As sick as it is, the death of her child has turned Dr. Jo into someone who fucking lives on this earth, walking on water. I know she doesn’t feel this way, as she is so ridiculously humble. But this is the way I see her. To me, that woman walks on water while cussing up a storm which makes me love her even more.

After I got home from a really long Sedona day, I had a meeting to go to for your Foundation. We had to choose some new board members. As of now, our board is really small and intimate. I want it to stay this way. I need the people on it, who have walked through hell and back with me. Who you knew and loved because they are family. My sisters. The board meeting was VERY formal which was so weird to me. I got about half way through it but then my head started spinning. I lost it. In the middle of everything, I buried head on the table, in my arms, and just started bawling. I felt the hands of Fernanda and Tricia rubbing my back. I stayed that way for a few minutes. Then I just got up and bolted out of the restaurant, crying, crying and crying. Just like that. You know what I wanted to do? I wanted to run really, really, really far away. To the most dangerous neighborhood in Phoenix. I wanted to run out in the middle of traffic to get him by a car. I decided the boots I was wearing were too cute to ruin, so I sat down on a bench instead. I sat and soon Fernanda came and sat down with me. She sat and held my hand and pressed it up against the locket that I gave to her with some of your ashes in it. She kept asking me where I was. Where my head was. I couldn’t even answer her. I just sat and cried. I think we sat there for about 20 minutes. I ended up trying to gather my thoughts. The fact that I was sitting around that table last night, talking about you, like you were a business made me sick to my stomach. It was too much for me to handle and I went into it, completely blindsided. I felt like I was being beaten to a pulp. I felt like my insides were being ripped out. I felt like I wanted to just die. I went home, after that meeting, looked at Warden Woody and said, “Give me a fucking Ambien.” He tried to argue. I wasn’t having it. The running off of 5 hours of sleep, for the past 3 days was caching up with me. After yesterday and last night, I couldn’t do another night of tossing and turning. I popped that little Devil and it was lights out until 7 a.m.

Today. Groundhogs day, all over again. Met a Lovie for coffee. Cried. Our lovie, cried too. Talked. Cried. Made some promises. Took a drive with her. It felt nice. Ran to meet Miss Mandy Bee for lunch. She came wearing her Owl SPIRIT HOOD because she is that crazy, that she thinks she is a Goddamn Owl, in real life. And we are both that weird that we like to wear our animal Spirit Hoods, everywhere, just the way you and I did. I’m wearing yours now, as I sit here and write. We sat outside at America’s Taco Shop. Mandy had some exciting news about getting the word out there about you. Just as we were in the middle of talking about you and I was starting to tell her what bullshit this is, that you died of this disease because nobody’s voice has been powerful enough to make the fucking world stop and LISTEN. Why the fuck does this have to be me? This should have been somebody else, 5 years ago and then you would not have to be fucking DEAD. I started to get really upset. I started throwing a pity party to Miss Mandy Bee. Why me? Why him? I don’t want this. I want this to all go away. I want him back. I don’t want to stay on this earth. I want to die. I don’t want to fucking do this. Just as I was saying those words, Ronan…..He appeared. Outside. On the patio where Mandy Bee and I were. Ben. What the fuck. Somebody is clearly messing with me, Ronan. Ben with the Bald Head. I looked at Mandy. I seriously thought I was dreaming. Mandy watched me, she grabbed my hand. Do you want to leave, she asked? No, I said. His Dad came and sat down and said Hello. His mom came out next. She looked at me and said, “You’re Maya, right?” I said indeed I was. She asked if I remembered her from the clinic. I had forgotten her face. But I remembered Ben’s. I stood up to give her a hug. Her husband hugged me as well. We sat and talked. They looked sad. They looked scared. Ben looked beautiful. I wanted to eat him up. I wanted to spend my whole day getting lost in his dimples while kissing the top of his bald head. His mom kept saying she felt like they were upsetting me. I was upset alright, but it wasn’t for the reason that I think she thought it was. I was upset because just 10 minutes before they arrived, I sat and bitched that none of what I was doing, mattered because you are gone. I gave into the selfish Maya that sometimes comes out because the bottom line is, YOU ARE DEAD. But Ben is not. Ben is here. Ben is still fighting. Ben saved me today. I know that was a sign from you, Ronan. That was too much of of coincidence, for it not to have been. That was your way of communicating with me. That was your way of saying, “Hey Mama! Don’t give up! I’m right by you, helping you. Mama, you have to be the loud voice now. You have to take everything you are doing and keep going, for all the other kids out there. For all the other kids who deserve a future. For me, because this is what we were meant to do, together.” Ben was you today. And Ben was exactly what I needed at that exact moment. I know it was you. Thanks, Ro. I’ll keep on truckin’ until the world turns into a sea of Gold for SEPTEMBER. But PURPLE, for you. Ben gave me a big hug goodbye. I kissed the top of his head. It reminded me so much of yours.

I spent the rest of the day, lost in what had happened at the Taco Shop. I ran over to Katie’s store. I was sitting at the counter, with my computer, doing some things. Christy and Katie were behind the counter, working. Pandora was on, as always. As I was sitting there, one of your favorite songs started to play. Angus and Julia Stone, “Big Jet Plane.” I sat there, stunned. I looked up and said to the girls, “This was Ronan’s favorite song.” I covered my face and started to cry. Christy asked if I wanted her to turn it off. I told her no. About halfway through the song, my phone rang. Of course it did. Was this you too? How does this always happen, every time I seem to be having a really hard moment? Our favorite lovie always knows when to call.

I picked up. I said one word.

“Hello.”

“Why are you crying?”

-how the fuck does he know i’m crying?? all i did was say hello.

“I’m not. I’m fine. I don’t know.”
– i start to cry, harder.

“What’s going on? Yes, you are, cut the bullshit and tell me what’s going on. Please.”

fuck. why can’t i ever pull the wool over our lovie’s eyes? i don’t want to say why i’m crying. but i did.

I think it went something like this……”Because I’m sad. Because of the song on the radio. Because of the board meeting where Ronan is a business. Because I miss him. Because of Ben at America’s Taco Shop. Because of Thanksgiving. Because I have to fucking survive Thanksgiving. Because I don’t know how I’m going to get through it. Because I haven’t slept. Because I want him back. Because I JUST WANT HIM BACK.”

Silence.

“I’m sorry, darling.”

I don’t remember much more of the conversation. But by the time it was over, I had stopped crying. It was enough. It was like an invisible hug, from you.

I left to pick your brothers up from school. Quinn had a sore throat so I had made him a doctor’s appointment earlier in the day. I stopped to feed your brothers, before our appointment since we didn’t have time to go home. I went into Jack and the Box while your brothers waited in the car. It was pretty empty. There was a man at the counter. You could tell he was homeless. He was dressed as nice as he could possibly be. His shirt was tucked into his pants. He was older, probably in his 60’s. He was pulling out coupons to pay for his 3 dollar meal. He smelled awful. He needed a haircut and a shave. He was hungry. I could tell he was so very hungry. I waited my turn. I watched this man with the kind, sad eyes. He didn’t seem to notice me. I watched as he paid for his food. I watched the way he sucked down his drink like he had not had anything to drink, in days. I’m ashamed to say, in my old life I probably would have felt sad for this man, told myself you are so lucky, Maya. But it is very possible I would have just looked the other way while counting my blessings. Not today. Today, I wanted nothing more but to take this man home. Feed him. Let him shower. Give him clean clothes and a bed to sleep in. I wanted to sob for this man. I wasn’t sure what I was going to do, but I knew it wasn’t going to be nothing. I paid for my food. I watched the man, standing at a table, putting his coupons away. I took out one of your cards. I wasn’t sure how do approach this man, as I didn’t want to offend him. I walked over to the table that he was sitting at. I gave him one of the cards with your picture on it. I handed him a 20 dollar bill. He looked at me and said, “No. No. Really? Is it that obvious?” I simply said, “No. Not at all. This is not from me. This is from my son. He died of cancer. He wants you to eat.” The man tried not to accept my 20 bucks. You could tell he wanted it, but you could tell he was also a man who still had a pinch of dignity left. He told me thank you. He told me that I should save my 20 dollars and give it to the humane society. I told him I didn’t want to save an animal.(sorry. i’m am a animal lover. but these days, kids with cancer just tug at my heart a little more. today, this hungry man, tugged at my heart a lot more) I told him to please take the 20 bucks. I told him to go and do something kind for someone else. He promised he would. I believe him. He told me, that he had just spent his last 3 dollars, on his meal. I am such a skeptic of human beings, Ro; but not today. Today, I believed this man. Today, I believed in the human spirit and I believe that, because of you. It’s days like today that I know that you are making me a better person than I could have ever imagined. It’s days like today that I realized that I need to stop fighting all the little gifts you are leaving me because I know they truly do exist. And I know I am worthy of receiving them. I know they won’t bring you back but I know they will keep you alive.

I have to go now, Ro. Too tired. Too sad. Too much. I love you. I miss you. I’m sorry. I hope you are safe. I love you to the moon and back, baby boy.

One last thing. But not a little thing. A HUGE thing. Bret Michaels. Bret Michaels the kick ass Rockstar who is the genius behind the band, Poison. Bret Michaels went on the Regis and Kelly show today. He wore your F U Cancer bracelet, Ro. He is spreading the word about you. Can you believe this???? I am in awe. We so need people like this, behind your cause. We so need a voice for Childhood Cancer. Education=Awareness and Awareness=CURES. People have to start listening. Because of what that man did today, they are going to listen. I have a feeling the gorgeous woman in his life, had a little something to do with this as well. It takes a strong family united, to get things done. Today, they did this, for us. For YOU. For all the other parents and kiddos out there who have been forced into this nightmare. For all the parents and kids out there who are helpless and so scared. He helped us all today and I wonder if he has any idea, how much it means? How this could really get the ball rolling and start changing things. Because babies/kids/teens need to stop being fucking MURDERED by Childhood Cancer. So Mr. Kickass Rockstar Bret Michaels. Thank you from the bottom of Ronan’s wild and free heart. I know you know that all good things, truly are wild and free. You are an amazing man. And gorgeous Kristy. Thank you for being the raddest wild and free mama, behind this man by doing something so selfless and kind. You two, are amazing.

Ro baby. Did you ever in your life think that for only being almost 4, that you would have so much power? I always knew this. Your beauty alone moved mountains while you were among the living. Now look what it’s doing and you’re not even here, Ro. You are that special, beautiful, and magical. You will always be mine. And I will always, be yours. Forever. I love you.

20111117-012557.jpg

The Beast has been Tamed. For today.

Ronan. I’m wiped out. But restless. What’s new. I feel like this most days. But today, I am feeling extra exhausted. I think the day of running in the hot sun, crying, throwing up, trying to write Dr. Kushner a letter, throwing up some more, meeting with Dr. J, and tending to your brothers tonight, has done me in. But here I sit, unable to turn off my brain, worried that if I don’t write to you, that you will be sad. That you will think I don’t miss you, I don’t ache for you every second of the day, that you will think I’m forgetting you. I still feel like this is my way of taking care of you. This is my way of feeding you dinner, playing with you, bathing you, reading to you, tucking you in and kissing you goodnight. This is the way I take care of you now, by writing to you so I can make sure you still feel like a part of our family.

I took your brothers to school today and told them it was Rosh Hashanah. They had no idea what that was, so I explained to them it was the Jewish New Year. They wanted to know all about it. I love their curious little minds. I did my best to explain it, and told them Rosh Hashanah marks the start of a new year in the Hebrew calendar. How much of it is about reflection and striving to be a better person. I love that.

After we talked about this in the car on the way to school, I got them to agree that they would take some time in the next few day to really reflect on our past year. Should be interesting as it was the worst year of our life. I am going to let them answer in whatever way they want, as they should not be afraid to feel the things they are feeling. I can just hear Quinn screaming that this past year was awful because you died. I’ll embrace that and nurture that, but he is also going to have to come up with something a little more peaceful and positive. We need to nurture both feelings. They deserve to say how they feel and to take the time to sit back and reflect what we have gone through. I feel like explaining this holiday to them, is a good way to put that out there.

Ro baby. I passed out. Cold, after writing the above. It’s 3:30 a.m. and I’m wide awake. I hate that I struggle with this sleep thing so much. All I want is to sleep for 12 hours. Straight. My body and mind both need it. I have a lot to do tomorrow that requires a lot of my brain power. My brain does not work the way it used to. It is beyond frustrating. I was thinking about this as I left Dr. J tonight. We had a session that lasted over an hour and a half. I left there feeling so tired, that I could hardly function. I had to drive to pick up your brothers and I was asking Dr. J questions in my head like if she ever thought my mind would be the same again. If it would ever go back to being not filled with so many painful and paralyzing memories. I then sat back and wondered if I would ever be that girl again. That fun girl that I used to be. I thought about how it must really suck to be around me, to my friends now, because all that is associated with me, is sadness. A sadness that nobody knows what to do with and a reality check that nobody wants. This is a big part of why I tend to go into hiding. I don’t want my friends to feel sadness when they are around me. I’d rather not burden anyone and go through this alone.

I had a meeting today with my lovelie, Katie, from the Garage. My friend, Carolyn, met us for lunch too. We are working out some very fun details of an event that will be coming up for Ronan. I don’t want to say too much about it yet, except for Save the Date for the evening of Thursday, November 10th. We are putting something amazing together and it will be in Old Town Scottsdale. I am hoping to finalize the details by this Saturday Morning and will announce them this weekend, so stay tuned. It is going to be a night full of all things Rockstar:)

After I left Katie, I came home and camped out in your room for a while. I threw down a blanket, sat with your Urn and GiGi. I tried to hash out my Dr. Kushner letter. You know it takes a lot for me to be at a loss for words, Ro. I could not find the words to write to him today. I was struggling with being the wild animal mama, who just lost her son, as well the composed mama who wants this letter to make sense because I want him to read it. I was trying my best to be the composed yet emotional mama. Those two things are hard to navigate together. I did a lot of writing, then stopping, walking around, throwing up, writing again, crying, throwing up. I had no idea I was going to have such a physical reaction to this letter writing. I also had to finish up the timeline that Dr. J wanted. I started it from the time you were diagnosed to the date that you took your last breath. I had to look up dates from the writings of this blog which was bloody horrific as well. I told you I don’t reread this thing. The bits and pieces I had to go back and read, to fill out dates of things, was absolute torture. It was more painful than I thought it would be. I avoided as much as I could, but even catching glimpses of some of my words was enough to make me want to find that big hole in our backyard and bury myself in it for the rest of my life.

I finished the timeline, but I did not even come close to finishing the Dr. Kushner letter. I ran out of the house, feeling exhausted and beat down. I don’t know how I am going to win this battle without you, Ronan. I have been feeling so overwhelmed with so many things. I got to Dr. J’s office and I felt like I was going to pass out. I slumped down on her couch, and let the weight of my body sink into the heavy world around me. I easily could have slipped into a coma. I gave her your timeline. We went over all of it for over 2 hours. I felt like I was being transformed back into each date. I could hardly find the words to articulate my thoughts. She was gentle with me. She helped me get through it. I don’t know where she came from Ronan, but that woman is unlike anyone on this earth. I brought her a little gift, from you. A shirt that I had Samya make. The “All Good Things Are Wild And Free,” shirt. It was meant for her. It was meant for you. It was meant for me. She loved it. She knows the deeper, spiritual meaning behind this shirt. It’s going to become my personal freaking mantra.

Ro baby. I started this post days ago. Days. Before my little freak out post last night. I know I freaked out. I have to every once in a while. I am such a calm person by nature, Ronan. Feeling anger like I was last night had to be unleashed. The beast, had to be tamed. Your poor Daddy Woo. My Superman, amazing husband. The BEST man on the planet. I know I don’t write about your Daddy a lot on here. For a few reasons. I have to keep some things, sacred. What we are going through, and how we are going through this is very different. But we are going through it, together. He is my silent partner in crime. The one I can always count on, no matter what. The one I love and I will love forever. The one I sit back and watch, as he coaches your brothers basketball game and I think to myself, you are so lucky to have him. I know this. As much as I blab about checking out, leaving everyone and everything behind…. that is my pain talking. You know I would never do such a thing. Your daddy is being supportive of me and my craziness. That makes me love him even more. He knows I’m not going anywhere, but if I up and said I wanted to go away, to Thailand like I often joke about, he would say o.k. How many people can say they are married to a man like that? Not many, I’m sure. The times that I do mentally check out, he knows I’m not going far. He knows he is my home. He knows it will always stay this way. He is not worried because he knows me as well as he knows himself. He knows us. You know us, Ro. You know there is nothing to really worry about. I’m human. I’m hurting. There is no easy way to go through something like this. I am simply just doing it. One day at a time. Hour by hour. Minute by minute. Cuss word after cuss word. Uncensored. Raw. Real. Because that’s the path I’ve chosen and I’m not looking back at the things I say or the words I write. Because at the time, it was exactly what I was feeling and needing to say. No regrets.

So, baby boy. What else have I been up to? Trying to find a balance in this new life. Trying to figure out how to handle all these fuels in the fire. But wanting to make sure I am grieving for you properly as well. Dr. J asked how often I sit back and really think about all that has happened. How often do I just sit with this? It is always with me. But to think about all the millions of details, in depth, is so painful. I sit with these thoughts of you, when I cannot control them. I give into everything I am feeling, when I am with Dr. Joanne. I am also very good at giving myself a million things to do, to distract me. I am being so productive. I sometimes think too productive. But what is my other option? To stay in bed all day and do nothing? I think allowing myself to do this once in a while is o.k. But for the most part, I need to stay busy with my days. I need to sit here and figure out how I am going to make your little face, change the world. That is such a big job, Ro. But if anyone can do it, it’s you. It’s me. It’s us and these amazing people we have, wanting to help, that can get this done. Because if nothing comes from this, then what? You would be so pissed at me. I’m not going to fail you. I promise.

Liam and Quinn had basketball practice tonight. Your Daddy was late due to being stuck in traffic, so I had to fill in and be the pretend coach. It was cute. It was fun. Your brothers loved having me fill in. Your Daddy came to the rescue soon, thankfully, because I didn’t have a clue as to what I was doing. We had dinner afterwords, at Beckett’s Table. Liam started not feeling well as soon as we sat down. I watched him as he put his little head on the table and said he had a really bad headache. He could hardly contain himself the pain was so intense. That’s never happened to him before. I took him home, while your Daddy and Quinn finished up dinner. I gave him Tylenol. He threw up everywhere from the pounding of his head. I ran him a bath and cleaned him up. The whole time, I was thinking to myself that this was the first time, that I have taken care of someone else, besides you, since you were diagnosed.  This was the first time, that I was taking care of someone who didn’t have Cancer. I felt so lucky and blessed to be taking care of Liam. I felt so lucky, to have him there, being sick because of a headache and not Cancer. I was thankful to put him in the bath, to wash his hair, to give him 7-Up and to tuck him into my bed. I felt thankful to be his mama. I wished you would have been there, helping me, so badly.

My mind instantly went to my bad place as I prayed that this is just a headache and not Brain Cancer. I got physically sick to my stomach because now I know too much reality. My mind works differently and it took everything I had not to throw him in the car and take him to PCH for a MRI or CT scan. He has been asleep for a while now. I will wake him soon, to check on him. I will watch him for the next few days. I will ask you to take care of him and to please make sure it is only exhaustion/a headache. They say lighting doesn’t strike twice, right? So they say. I’m an instant skeptic.

I have to tell you one more thing. I found something the other day on the site that I use to post a lot of my sayings and pictures. To say it knocked the wind out of me, doesn’t even touch how it made me feel. I have to post it. I have to share it because it is just too real. I found a picture of a little girl. It was under the “Twilight,” category because I guess she is supposed to be the spawn of Edward and Bella. She looks exactly like you. I even showed your brothers and they both were in awe. I swear, if you had been a girl, this is what you would have looked like. It looks so much like you, that I can’t stop thinking about it. Or maybe I am just delusional. That could very well be a possibility. Here is the pic.

G’nite my sweet baby. I miss you. I love you. I hope you are safe. Sweet dreams.

Do not believe in anything simply because you have heard it.
Do not believe in anything simply because it is spoken and rumored by many.
Do not believe in anything simply because it is found written in your religious books.
Do not believe in anything merely on the authority of your teachers and elders.
Do not believe in traditions because they have been handed down for many generations.
But after observation and analysis, when you find that anything agrees with reason and is conducive to the good and benefit of one and all, then accept it and live up to it.

-Buddha-

All Good Things are Wild and Free

My friend, Samya, is amazingly talented. She has designed a tee-shirt, inspired by Ro, and children everywhere, sick or not.  Until the end of the month 15% of sales will go to Ronan’s Foundation. You can order any shirt, any style. Support Ronan by wearing the raddest shirts around. She’ll even make an F U Cancer, one!!
Thanks Samya<3
Below is what she had to say about the new shirt and how she was inspired.
all good things are wild and free. -henry david thoreauIf we are lucky, as adults, we will still feel this way…we will still be this way. We will love wildly, we will give our hearts and be selfless. We won’t strive harder to drive a range rover than we will to dance in the rain with our children. We can make choices as adults to live this way. This is why this quote fills my heart…kind of like when I hear that’s it’s okay to march to the beat of a different drum…because that’s always how I’ve been. Always heard a different beat, always needed to be wild and free.But this quote also breaks my heart. Because if there is one thing that is certain, it’s that children should be able to be wild and free. They should be able to be careless, they should be able to jump in puddles and color on the walls. They should be able to be utterly wild, and free. This year I have been faced with three important women in my life whose children have been diagnosed with cancer. Two of their little girls, Mia and Elizabeth, are fighting for their lives. One, a little three year old named Ronan Thompson, lost his battle, and he is now an angel in heaven. Ronan’s mom Maya Thompson has a blog called RockstarRonan.com, and she has made it her mission in life to raise awareness and funds for Childhood Cancer. Maya and Ronan, and Sandra and Mia, and Heidi and Elizabeth have changed my life. I work less, I play with my children more. I have less rules, I give more kisses. I know that ALL GOOD THINGS ARE WILD AND FREE, and I won’t take for granted that my children and I will always be able to live like that.

When you wear this shirt, I don’t want you to be sad, I don’t want you to think of Cancer, I just want you to try to live the words that Thoreau wrote. Forget what’s unimportant. Be nice, smile, let the other car go ahead of you in traffic. Be who you were meant to be before all the other stuff got in the way.

I handscreenprint Thoreau’s beautiful words onto a super soft, rather sexy backless flowy burnout tee. The tee is cropped in front and long in the back, and it is backless. Available in S,M,L,XL. I am wearing a Large in the photos, I like them extra flowy. The color is oatmeal heather and you can choose your ink color. I used lipstick pink on this one. *****In NOTES TO FIREDAUGHTER when you are checking out, please indicate desired size and ink color.