Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

Seriously, the BEST comment I have read in a long time. Thanks, Lisa;) Had to post it.

I too found out about Ronan and you because of Taylor’s song. I went to the very beginning of the blog and fell in love with Ronan. I watched you on Katie today and there are no words to explain the magnitude of this little boy. I read somewhere that he had a heart of gold, the same color that brings awareness to childhood cancers. Not a coincidence I’m sure. I do have to admit that at one point during the show I got lost in thinking “damn Woody is hot”…there I said it, and there’s no shame in my game. Other bitches were thinking it too!I am the very proud daughter of a breast cancer survivor. I wear pink for my Mama, and will continue to do so. With that said, I’ll add that, were that not the case, I too would be fucking sick of the pink ribbon shit, and secretly sometimes am anyway. It is EVERYWHERE, crammed down your throat, and damn, how many pink ribbon bracelets and shit does one person need? BTW, the pink ribbon that sickens people is the color of Pepto Bismal, which is used for upset stomach and nausea. Again, not a coincidence, but funny as hell nonetheless.

I have been involved with our local Relay For Life for over ten years, and even served on the planning committee for four of those years. I am embarrassed to admit that I blindy assumed that the money raised for the American Cancer Society would be distributed equally among various cancers and used in research. Sadly, after reading this blog, I have been enlightened about the fact that this is not the case. I did some research (which for me just means I read some shit online ;) ) and it basically looks like ACS spends more on advertising and party supplies than childhood cancer. Hmmm, good to know. I will now just donate my funds to Ronan’s foundation, and won’t have to force my lazy ass to walk all night to do so!

I have known of other cancer awareness colors, but never knew about Gold for Childood Cancers, and I am one of the guilty ones that never really gave it much thought. It is never discussed on commercials or in print, and the damn WWF has NEVER turned gold for childhood cancer, although children make up most of their audience AND those tacky ass championship belts that I secretly love are made of gold. I’m sure it’s some fake ass gold, but you see where I’m going!

I did not mean to turn this into a novel, and I don’t even know if you’ll see this Maya. Regardless, I wanted to let you know that, while I don’t always agree 100% with all your beliefs and everything you say, I respect you more than most anybody in my life, and I’m poplular and have a lot of people in my life, so that says a lot:) I have learned so much from you about so many things, and although I’m 43, I want to be just like you when I grow up. I now am more thankful for my boys that are considerably older than yours but are still my babies. I spend less time working on making sure I have the most perfect roses on the street, and more time just actually taking a nice whiff of the bastards! And if I feel like crying for whatever reason, I do it, even if sometimes it’s the ugly cry. And I have learned that it’s okay that the word FUCK has always been my most favorite word ever, because you have taught me that it is fucking versatile!

I will continue to wear pink for my Mama, but will now also wear GOLD for Ronan and his Mama as well. I will continue to follow your story and bring awareness to childhood cancer. I cannot wait to see you move mountains; you, my dear, will change the world!

A very Katie Couric pity party kind of day

Ronan. I guess I had kind of a pity party of a day. I started off the day by throwing up all over our hallway early this morning in front of your brothers. Awesomeness. They were both so impressed. I did go to my office. Where the nicest people in the world work. I’m not even exaggerating. What kind of office is filled with laughter, kindness and love all the time? What kind of office has the sweetest girls, peaking in to bring you a water, lunch, snacks and my favorite, Vita Coco? My office. I am so thankful for this new little home. I get a lot done there. Much more there than from our sad little house. I was productive today but also greatly distracted. My phone and emails were blowing up due to the Katie Show that was happening today. It aired on the East Coast first. My twitter soon started blowing up with the kindest tweets ever. I love my little twitter family. I went into lockdown mode and decided I was not ready to watch it when it aired in Phoenix. Mr. Sparkly Eyes called me. “Where are you watching this?” I told him I was not. “I am living this. I do not need to watch this. I’m sick to my stomach. I’ve been throwing up all morning.” “You should not still be throwing up this late in your pregnancy,” he said. I told him the obvious reason why, “I’m allergic to my house.” This sent him into those famous chuckles of his. “You are so cute. Allergic to you house. You are too much.” See Ro, everyone thinks I am being overly dramatic. Hello! I am not sticking my fingers down my throat to make myself puke. The puking is happening totally on it’s own and I don’t think Poppy has anything to do with it anymore. I don’t know what it is going to take for everyone to start believing me.

I got some work done and popped by our Mr. Sparkly Eyes office. We sat for a long time talking about everything and anything. I told him all about New York and how wonderful it was to be there with my girlfriends. How it was such a great little bonding trip for us. I told him all about Taylor and all the sweet things we talked about. I basically caught him up on our entire trip. We talked about that little secret thing I am working on. He gave me his best fatherly advice on it, asking a couple things of me. I told him I would listen and remember. “You are a remarkable woman and I am so proud of you. Actually, you are a remarkable child.” I huffed and puffed. “Stop calling me a child. I am a grown adult.” He told me I was a child and to stop arguing with him about it. I rolled my eyes at him instead. He listened to me talk about some more things and said to me, “You are so sad today. Why are so sad today?” I told him, “Because I just want Ronan here. I don’t want to be on the Katie Couric show because he is dead. I just want Ro back.” “I understand. I know. I’m so sorry.” he mumbled. He watched me spin around in his office chair while staring at pictures of you on his bulletin board and watched as my face turned from that look of, I am o.k., to I am really not o.k. “I don’t know how to help you or what to do.” I looked up at him. “You can’t help me. But you have helped me more than anyone else.” His eyes fell to the floor. “Why? How?” I couldn’t tell him how or why right then and there because I knew if I did, I would have ended up in a puddle in the middle of his floor. I didn’t feel like going there as I was hardly holding it together, as it was. I avoided his question and his eyes full of tears. I ended up telling him later. “Because of your voice of reason, your never judging me, your advice, opinions, and honesty. Because you love him so much and I can see the way he’s changed you. Because you have been my best friend throughout all of this and never went away, even during the worst of times. You never gave up on him or me. Because of the way you believe in me so much, even when you know I am bat shit crazy. I could go on and on. Because you saved my life.” Your Sparkly knows all of this and I know he does not give himself the credit he deserves. You know what he told me? That he is lucky to have me as his daughter. I am the lucky one, Ronan. Truly.

I came home to our house. Your daddy was already home. Your brothers were gone with Mimi and Papa. I plopped down on the couch. Your daddy was watching T.V. like a normal person. I started freaking out, like an insane person. “How can you sit here and act like everything is the same, in our same house, doing all the same things that we used to do with Ronan when nothing is the same anymore!?” He was just freaking watching baseball. I don’t know what I expect. Sometimes I have berserk fantasies about uprooting everyone to somewhere completely different. I mean, it just feels wrong to me to sit here and do all the things we always used to do. Your daddy was quick to point out why my blubbering madness didn’t even make sense. I just sat and listened to him while the tears poured down my cheeks. I then got up and threw myself in your bed like a child having a temper tantrum and sobbed and sobbed and sobbed. I’ve been in your little bed, all night long. Your daddy came to check on me. He rubbed my back. “Do you need anything?” I told him no. He said, “I know, you don’t need anything or anyone. You can do this all on your own, right?” I told him, “Absolutely.” He then goes, “Well, we all still love you anyway. Tough ass.” I ignored his funny comment because I was too busy drowning in my tears that soaked your bed.

I ended up watching my interview on Katie Couric while in your bed. Alone. That’s how I wanted to see it. I thought they did a beautiful job of putting it together. Of course I am kicking myself for not saying the 50 other things that I wanted to say. Like how my last words to you were also, ” I love you so much. You are my best friend. I’m so sorry. I promise to fix this for you. I promise to make you proud. Please don’t go away. Please don’t ever leave me. Please, I am so scared. Please somebody save him. Please somebody take me instead. Please Ronan, I can’t live without you.” I also wished I would have freaked out and talked about how fucking fucked up it is that childhood cancer is so ignored. How nobody cares. How is it acceptable that childhood cancers is the least funded out of all the cancers. Why doesn’t the whole world know that the GOLD RIBBON is for childhood cancer and SEPTEMBER is CHILDHOOD CANCER AWARENESS MONTH. WHY ISN’T THE MONTH OF SEPTEMBER GOLD EVERYWHERE? Why has only 1 new pediatric drug for childhood cancer been approved in the past 25 years? WHY DID RONAN AND SO MANY OTHERS HAVE TO DIE BECAUSE OF THE LACK OF AWARENESS AND FUNDING? WHY ISN’T CHILDHOOD CANCER AT THE TOP OF OUR PRIORITY LIST? Because if it were, my Ronan might still be here. I guess I can save that for another time, right Ro? I did the very best I could and I am so very thankful for the awareness that I know our show will bring. I’ll get off my soapbox now.

I’m going to go now baby doll, before I start to freak out once again. If I were not pregnant, I would be doing a very dangerous night hike right now. Poppy is keeping me from throwing myself off the side of a cliff. I miss you. I love you. I hope you are safe. And I wish you were not gone from me or in a better place. There is NO better place in the world then with me. I am so very sorry. G’nite little man.

xoxo

Thank You to Katie Couric for giving Ronan such a huge platform. It was an honor to be on her show.

 

 

http://video.katiecouric.com/services/player/bcpid1778770226001?bckey=AQ~~,AAABWfWhrnk~,FtZztaNxIqTVkSb1ju2Ka7JVAY8r79nB&bctid=1925031436001

Katie Couric Tomorrow!

 

 

I hope you all can watch. The show that Woody and I taped, will air tomorrow. Also, be sure to tune in on Friday as well for the amazingness of Taylor! Thank you!

xxoo

RoTay Magic Everywhere

Ronan. These past few days have been a whirlwind in the most amazing way. I took the red-eye on Saturday with Melissa to New York. We arrived at about 4 a.m. east coast time and a car from The Katie Show was waiting to pick us up. We got to our studio pad, a.k.a. the only place that I find peaceful, and crashed out in the bed that feels like you are laying on one giant marshmallow. It truly is something out of this world. After sleeping for a few hours, we got up and prepared for the day. Melissa ran downtown to meet a friend and I met our little, Rachel, at Bloomingdale’s for some lunch and of course, fro yo. After that, I parted ways with Rach and headed back to the upper east side, where I was staying. Melissa returned soon and we met up with your Fairy RoMo and her husband at the MET. We spent the day in the most glorious way, with not real plan. We enjoyed art, friends, laughter, and a ton of good food while we waited for the other girls to arrive. Later that night, Stacy and Fernanda arrived. We had made plans to meet up with our Fairy RoMo for dinner and I was dying for some good chinese food. Stacy, Fernanda, Melissa and I hopped on the subway and made our way to China town. We met up with our friends and I was so excited to introduce everyone. The introductions were way overdue and we had such a great night enjoying each other and the most unbelievable chinese food that I’ve ever had in my life! Poppy was very pleased to say the least. It was late by the time we got home and I crashed out in our bed with Fernanda. We were so tired, but we were determined to stay up until midnight to download Taylor’s new album from iTunes. We kept falling asleep. Fernanda would shoot up out of bed, “10 more minutes!” and fall back asleep. I dozed off and woke up right around midnight. “It’s time! We can download it now!” I felt like teenagers who were having a slumber party, waiting to get the new album of our most favorite artist. We both downloaded “Red,” with one eye open and quickly fell back asleep. We had to be up really early in the morning to be at the Katie Couric show.

Monday morning quickly came. We got up really early, got showered, dressed and ready. We met all the other girls, at the studio. Stacy, Melissa, Becca, Carolyn, Rachel, and Fairy RoMo. Everyone looked beautiful and the producers put us all in the green room where we snapped pictures and enjoyed the moment that we were in. Soon, we were swept off to take our seats in the studio audience. We had great seats and were treated like gold. Every single person on Katie’s staff is an absolute delight. We watched the studio fill up with the audience. There was such a buzz in the air. The Swifties were there, in full force and so adorable. I sat on the edge of one of the rows and felt more nervous for the show I was going to sit and watch, then the one I had taped just a week earlier. I wasn’t sure why. Maybe it was because I wasn’t sure what to expect. Maybe it was because for the first time, I was going to see Taylor and I had no idea how I was going to hold it together. Carolyn had asked the producers, if I could say hello to her and they said they would try to make it happen, but they were not sure as the day was packed. As far as I was concerned, I was just happy to be there, watching the show with my beautiful board members.
Katie Couric soon stepped out on the stage. Everyone went crazy. She is so darling and so good at what she does. She made some remark about how she knew who the audience was really excited to see, that being Taylor. She did a great little introduction and soon out walked Taylor herself, in the most adorable little goldish/yellow dress and sweater. She looks like Bambi. So tall, graceful, and young with a little bit of awkwardness about herself as if she truly does not know how beautiful she is. That only makes me love her more. The interview started and we were soon transported into Taylor world which is this world of all things sweet and salty. As in, the best combination of something ever. We saw the sweet Taylor who said things like, “I never want to be the girl who walks out on stage and says, Here I am! For me it’s always, Here they are.” Meaning her wonderful fans. I was floored when she said this. The self-awareness and the humbleness this sweet soul has, truly is remarkable. The salty/sassy side of Taylor played out as well. During a commercial break, Taylor yawned and Katie goes, “Did you just yawn?” Taylor quickly bounced back with, “No.” She has this totally adorable dry and spicy sense of humor that is so refreshing. It cracked us all up. My entire board was blown away by this girl who is so full of obvious brains, beauty and wit. She is one of the rare commodities of the world who truly deserves everything that has happened to her and who will never let it go to her head. In the world she lives in, that is so rare.
During one of the commercial breaks, I heard Katie Couric say to someone, “Where’s Maya?” They didn’t know where I was, but luckily Katie spotted me and I gave her a quick wave and smile. Katie whispered something to Taylor and they went on to the next segment. As soon as that segment ended, Taylor jumped out of her chair and came running up the stairs to me. I got up and gave her the biggest hug where I pushed back my tears with everything that I had. I just looked at her and said, “Thank you, so much.” We stood for a few minutes and talked softy about some things. She rubbed my belly and knew all about the baby girl that is growing in my tummy. She hugged me again told me she loved me and was so proud of me. I told her I felt the same way, that I was so grateful for what she had done. She asked how all the media was going and how I was handling it. We talked for a few more minutes about some other things. She knew about one of my secret plans that I have in the works that I have only told my inner circle about. It didn’t dawn on me, “how in the world did Taylor know this?!” until I sat down and had time to process our conversation. She said she was going to come back for some pictures. When I sat down, I noticed everyone looking my way and pretty soon everyone was whispering, “That’s Ronan’s mom!” They were waving and making hearts with their hands the way they always do for Taylor. It was such a sweet moment that I will never forget. Taylor did another segment with Katie and as soon as she was finished with that, she ran back up to me to take some pictures. We talked a little more. I asked her how she knew about my secret plan. She smiled and told me who had told her. She said, “You HAVE to do it.” I told her I knew and that I would. I love that she knew my secret plan and was on board with it. We talked about Poppy and she goes, “You totally have to name her Poppy. You’ve called her that since the beginning.” That made me smile, too. That Poppy name makes happy. I have definitely fallen in love with it. I told Taylor to tell her mom hello for me. She goes, “She is floating around her somewhere. I know she would love to see you.” I told her I would love that so much. She went back to the stage to get ready for the song she was performing. Everyone in the audience was so excited to hear her. She came back out and sang, her hit, “We are never ever getting back together.” It was absolutely adorable. Soon, the show ended and the girls and I sat in our seats, waiting to be told what to do next. Somebody from the show came over to me and said that Andrea Swift was wanting to see me. I was ushered off backstage where I waited for Taylor’s mom. As soon as I we saw each other, we embraced for the biggest hug. I couldn’t hold back the tears, seeing that woman. I thanked her for raising such an amazing daughter. We talked back and forth about everything. It was so strange as I felt such a strong connection to this woman who I just met, but felt like I had known forever. At one point, after she was thanking me for everything, she goes, “If I were in your shoes, I would be doing the exact same thing. We are all so proud of you.” Right then and there, it clicked. I understood why I loved this woman that I don’t even know. It’s because I know, she would die for her kids, the way I would have died for you. It’s because she has spent her entire life, after her children were born putting them first. It’s because she has fought for Taylor and her dreams, with everything she has. She loves her children with the same undying love, that I love you and your brothers and this Poppy. I could see all of that, just by looking into her eyes. That moved me in a way, that I will never forget. I will never forget the look in Taylor’s mom’s eyes and the kind words that came from her lips from one mom to another. At the end of the day, Andrea Swift, if in my shoes, would be doing the exact same thing that I am doing. Fighting with everything that she has for the rest of her life because there in NOTHING more important in your life than your children, dead or alive. I hugged her one last time and thank her again. I will never be able to thank that family enough for what they have done for us, Ronan, which is ultimately helping me to keep you alive. I will forever be eternally grateful for them and that amazing daughter of theirs that is wise beyond her years. One of the last things that Andrea Swift told me was that she thinks Taylor and I make a great team. I couldn’t agree more. I think many more beautiful things are to come.
After the show, Fernanda and I had a little adventure to tend to. We ran off while the other girls went and grabbed lunch. We were out for a few hours, having our eyes opened to an amazing world and we were so thankful to be a part of it. We returned back to the apartment, absolutely beat. It had been an emotionally exhausting day and we were both wanting to take a nap before the dinner that our Fairy RoMo had organized for the night. We laid down. Our plan was for a nap, but it took a very different turn. We ended up having about an hour sob fest over everything that has gone on, everything that we have went through. All of the love, pain, hope, suffering, and devastation of this entire fucked up journey of childhood cancer. She talked about how she she still can’t believe you are not here. How she thought even during your last hour, that you were doing to pull through. We talked about our day with Dr. Kushner and our pain and regrets with that. The why didn’t he tell us, you were dying? Why did he send us away with such a sense of blind hope when he knew, that you were going to die? She apologized over and over for not being there for the past year, but said she has been trying to process your death as well as my pain. She said she knows she has let me down. I tried to tell her, how she is one of the few people who has never let me down. How thankful I will always be for all she has done and how that I know when we are apart or when we don’t talk for a while, she is constantly thinking of us. I know this and I have always known this. Never in my life, have I had a moment of feeling let down or disappointed in that woman. She gave up everything to walk through hell with us and not once has she ever let go of my hand. I am so grateful for the time she had with you and the bond you two formed. I will always look at that as such a gift. We composed ourself, got up, washed our faces as our makeup was everywhere and got ready for the evening ahead of us.
We met up with Fairy RoMo, our board members, our “little ninja” Rachel, and Scott Kennedy from Solving Kids’ Cancer. It was a 3 hour dinner where my board got the chance to fall in love with Scott, the same way I have. He is the kindest, gentlest soul with the saddest eyes I’ve ever seen, besides my own and a few other parents I know, who have gone through this as well. I sat at the other end of the table from Scott and placed him near Fernanda and a few of the other girls as I wanted them to get to know him. It was only at the end of the night that we played musical chairs and I went down to sit by Scott to catch up with him. Our conversations are always intimate, sad, and deep. At one point, I had fought back my tears way too long and it was no longer working. I sat, listening to Scott while I wiped away tear after tear after tear. I never feel vulnerable crying around him. He gets the reason for my tears, more than most people. That breaks my heart so much. I wish none of us knew this pain. I wish that none of us knew this pain but I cannot change that. All I can do is sit here and form my army, to try to change this for all these other kids who are going through this or will go through this. I am so glad to have Scott as a part of my army. He is invaluable to me. We all left dinner and the girls were going on and on about Scott and how wonderful he is. I smiled and said I knew it from the very time I met up with him in that little NYC coffee shop. I’ve got a great intuition about people. Some might say it’s a gift;) I certainly think it is.
I’m back in Phoenix now, where everything seems to be moving full speed ahead. It was a great trip in so many ways. As a board, we got to bond in a way that we never have before. It was nice to get out of the business side of this and enjoy each other and all Ronan beauty that is everywhere. Everyone is so proud of one another, which makes me so very proud. You are doing such beautiful things, Ro. Thank you. I’ve got some secret side stuff to take care of right now. Blowing kisses to you, fingers crossed because once again, I am just following my heart to where I think it is, you are taking me. I miss you. I love you. I hope you are safe.
xoxo
P.S. If you have not bought Taylor’s new Album, RED, you need to. It is breathtakingly beautiful, as is everything she does. I have not stopped listening to it, since I bought it. I have informed Liam and Quinn, that is Taylor month at our house and that is all we are listening to;) Team Taylor FOREVER!
P.P.S. Taylor- Thank you. For everything.For letting him live on through you and all the beauty that you are surround with. For being such a wise free spirt who is truly grateful for every single minute of this thing we call life. For letting the boy with the most beautiful blue eyes, touch you to the core. You have helped this mama’s heart to heal. I love you so much.

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All Good Things Happen, in New York

Ronan. The night before the Katie show, your daddy arrived. As soon as he arrived, we hopped on a train and made our way to the SoHo area. There is a record store there that he insists we hit up, every time we are in New York. I was tired, but I sucked it up  for him. We also met up with our friend, Ally M and a girlfriend of hers. We had some dinner and did a little record shopping. It was a nice way to end our New York trip and I know it made your daddy happy. We got back to our place, kind of late, packed and went to sleep. I tossed and turned most of the night. I was nervous for the next day. I woke up early, got ready, and tried my best to calm my nerves. A car picked us up and we headed over to the ABC studios. I had a long talk with you in the car ride over. It went a little something like this. “Ronan. I need you today. I cannot do this without you. Please, help me get through this. Make me calm and relaxed. I need to feel you, everywhere.”

Once we arrived, we were taken into our dressing room where we sat and waited. I had already done my make-up and blown out my hair, so I was good to go. I wore my special magical sparkly shoes that remind me so much of you, because of your love for your sparkly toe nails. Our Fairy RoMo showed up just in time, to take my mind off of everything that was about to happen. We sat and caught up. We had some laughs and she sat back and snapped some pictures. Katie’s lovely team came in and briefed us a bit. I just kept telling myself to breathe. We were soon taken downstairs to where the segment would shoot. Our Fairy RoMo went off to the green room, which was really green. Your daddy and I sat and watched Katie do her thing from the monitors. We hadn’t met her yet. She finished her segment and came bouncing off the stage over to us. “Hi, I’m Katie it’s so nice to meet you.” We chatted for a few minutes. I had a moment where I thought I might pee myself, but thankfully I did not. She ran off to change and we went to sit and wait for her. She came back to us once again and started briefing us on what she would be asking us. I was still a little nervous but I slowly felt things start to shift. We were taken out to her stage and sat down on the couch. I was closest to Katie, your daddy on the other side of me. I smiled at the audience. I felt a switch flip. It was as if all of a sudden, you were sitting right there next to me. My nerves were entirely gone. What in the world? This is not me. I have stage fright. I freak out over public speaking. I sat back, the cameras turned on and Katie started right up with our story. I started to tear up, almost instantly. They were showing pictures of you and playing some videos we had sent them. Katie handed me a Kleenex. I looked into the audience. Tears everywhere. Katie started talking. One of the first things she said, was Neuroblastoma was a brain tumor. “SHIT!” I thought to myself. “What do I do? Do I correct her on national television?” I had no choice. I had to. That is a big misconception with Neuroblastoma and rightfully so. The name makes it sounds like it has to do with the brain. I think I said something like, “Actually, it’s not a brain tumor…” Then I let your daddy explain it in a way that I hope everyone could understand. From that point on, the entire interview flew by. I felt so at ease and so proud to be up there, telling your story. Katie has a gift of just making you feel as if she has known you for years. She was very choked up, for most of the show as was everyone. Katie does what she does best, which is being a true journalist with this amazing heart of gold. After a very hard topic she had us all in giggles when she said, “I’d love to have you back on the show after you have the baby. Baby Katie.” The entire audience laughed out loud. It was a great way to end things. We walked off the stage. She came following a few minutes later. We talked and she kept thanking us over and over for sharing our story. I wanted to pick that tiny thing up and thank her from the bottom of my heart. She is a wonderful human being for caring about so many others than just herself.

We left there and grabbed lunch with Fairy RoMo. She was blown away. She watched the entire thing from the green room and kept saying how brilliant and lovely it was. I smiled as hearing that from her, means the world. We sat there, eating our lunch. I looked at Woody and I looked over at Fairy RoMo and said, “I have something else I want to ask you.” Your daddy and I have been talking about this for a while. I looked up. “We want to know if you will be the GodMom of this baby.” Tears sprang to her eyes, instantly. “Oh my god. Yes! Of course! I would be honored. I’ll be the best fucking god mother ever.” I wiped away my tears and your daddy and I chuckled at that. “I know that,” I said. “That’s why I asked you.” It was one of the most beautiful moments that will forever be frozen in my mind. She is your Fairy RoMo and loves you so much, Ronan, even without ever having met you. Imagine how she will be, with this little one. She is such a gift. You are such a gift. Thank you for bringing her into our life.

We got home last night. I am going to try not to be dramatic here, but I’m going to be dramatic here. Not once did I throw up in New York City. After we got home and I hugged and kissed your beautiful brothers a bunch of times, I started to get really nauseous. I ran into our bathroom and threw up everything I had eaten for dinner. I honestly think I had a physical reaction from being gone, coming home to our house, and not having you here. This house that I once loved so much, makes me sick. Your daddy told me to change my attitude. I didn’t argue. I shut my mouth instead. I wish it were something as simple, as changing my attitude. I wish that you in fact were still here, and I was coming home to you and your two brothers. Not your two brothers and you sitting on an urn on top of my dresser. Fucking cancer.

It’s today. I just had a 3 hour phone interview for something that is coming up. Something that I will talk about when the time is right. I was told after our interview that I was the bravest woman alive. I smiled with tears rolling down my cheeks and just said, “Ronan was brave.” I am throwing everything I have into everything I do, all for you. It will be this way for the rest of my life.

Also, for as much as I cannot listen to Taylor’s song, because I sob every time I hear it… it plays non-stop in my head, 24 hours a day. That girl, like you, is such an old soul. I am still blown away by her grace, beauty, and dignity. I will be thankful for the rest of my life, for her and for you. I am going back to New York this weekend until Tuesday. We will be going to see Taylor on the Katie Couric show. A handful of my board members are coming with me to celebrate everything New York, Taylor, Katie and you, Ronan. I cannot wait. I also have a lot of unfinished business to take care of. All good things happen in New York. The BEST things happen in New York. I cannot wait to see what comes of this trip, this time. I am always so surprised by the amazing things that come from that magical city.

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

xoxo

Hello NYC

Ronan. This break from Arizona, could not have come at a better time. I am seriously about to go blind from all the sunny sunshine that just does not match the way my insides feel anymore. I spent the weekend at home. Pretty much in bed. I was trying to rest up for New York and was not feeling well. I also was seriously hiding from the sun. As in, I think I may have a sun phobia. I didn’t step outside Saturday or Sunday. It was only after the sun dipped down on Sunday, that I decided to go out to the grocery store to stock up on food before my departure. Monday came and went. I kept myself busy, getting ready to leave for my flight to New York. I tackled all the laundry that I have been ignoring, paid bills and packed my suitcase. I picked up your brothers, we did homework, I made them a snack, and I took them to a birthday. It was a NFL birthday theme hence the Monday night party. I came home, talked to your daddy for a bit and drew myself a bath. Your daddy came in to check on me.

Our conversation went a little like this.
Me: I think we need to move out of this house. I can’t stay here. It’s suffocating me. It’s too sad.
Him: O.k. we can talk about this. Just hear me out. You want to leave this house? You say that all the time, but that’s not going to make you less sad. You really want to pack up Ronan’s room? Then what? Start over? I think you would end up regretting that, but if that’s what you want to do, we will do that. To me, that seems like we’ve moved on. And I never want to move on from him.
Me: I think this house caused his cancer. And now this new baby is going to have cancer. (I know I’m not being rational)
Him: This house did not give Ronan cancer. This new baby is not going to have cancer. That won’t happen. Nobody has that much bad luck.
Me: I wasn’t aware there was a cap on how much bad luck a person has. I don’t think it works that way.
Him: I don’t know what to say. This fucking sucks. You are the worlds best mom. He was the most amazing boy. How the fuck something like this happens, is beyond me. It just goes to show you, how fucked up this world is.
I stop talking. I think about the moving thing. I am torn. I leave it at that. I get out of the bath and get ready for my red-eye to New York.
My eyes burn from crying. There is a little boy, who is seated next to me. He’s flying alone. He’s only 6. I strike up a conversation. I ask him what he’s going to New York for. He says to see his daddy, because he misses him. My heart breaks. He’s holding onto a little lego guy. I ask to see it. He shows it to me and pulls off the head. Just like you used to do. His hair is bald under his stocking cap. Somebody is clearly messing with me. He won’t put on his seatbelt. I coax him in to doing it. I tell him the airplane won’t be able to take off, until he does. He can’t do it himself. I help him. He’s out like a light now. He was out before we even took off. I turn my head towards the window to pretend like I give a shit about what’s going on outside as we take off. I do not. I turn my head so I can sob into your blanket. I sob as quietly as possible for a good 15 minutes. I can’t seem to stop. I miss you so much. I can’t breathe.
For as much as I love New York and am so thankful to be going, I hate all of this. I hate that we all are apart. You, wherever you are. Me, going to New York. Your daddy and brothers, at home. It would not be this way, if you were still here. I wouldn’t be doing any of this. All I ever wanted was simple. That was one of the biggest reasons I married your Daddy. Because everything was so simple. Our life revolved around each other and the three of you. It was so easy. No drama. No fighting. No cheating. No lying. Just a life that was so good and wholesome. Apparently that pissed somebody off, because we were then dealt the fucking worst hand. It was like, “Oh hello. You all love each other too much, so here’s some cancer for you. And not only cancer, but cancer in the form of your 3 year old and he’s going to die from it too.” What in the hell is that? Now I’m watching these other families that have gone through this or are going through this and it’s the same thing for them as well. The nicest families. It makes no sense at all. You can’t make sense out of nonsense, right Ro. I know this but I will never quit trying. I will always be searching for the answers that do not exist.
I am in New York now. Stacy is with me. As soon as we arrived, it started raining. You know that made me smile. We spent the day trying to catch up on a little sleep, grabbed a bite to eat, then I came back and tried to nap again. Poppy is still making me tired. I tried to nap but I really just went through some of the 500 email messages that had popped up in my inbox from just this morning. We met up with our Fairy RoMo for dinner and a little secret guest. It was a good dinner full of lots of secret plans that will be revealed when the time is right. I asked Stacy and your Fairy RoMo to come with me, knowing that you don’t get any better than those two when it comes to needing an open-minded opinion/some gut trusting intuition. We all left there with the same feelings of this totally feels right. I was so happy we were on the same page. It means the world to me that I was able to have the both of them there. I truly do have the most amazing friends.
That was last night, this is tomorrow night. Holy amazeballs. This city. I honestly come here, without many plans and the most amazing things come my way. It is pure Romagic. Today, we got up and walked the streets, making our way to see Fairy RoMo. We spent the day with her. The days with her always feel like I’ve been transported into another world, another time, where I actually feel happy. She has that infectious way about her that just makes me feel good. A feeling that doesn’t happen very often to me anymore. We saw some sights. Met up with one of her dear friends, who I have been dying to meet. Had a cocktail, (a virgin spicy bloody mary for me), and walked some more. It was one of those days where Stacy and I just kept looking at each other and saying, “Is this all really happening?” We parted ways as we had a dinner to run off to. We had plans to meet up with Scott Kennedy from Solving Kids’ Cancer. Stacy has been dying to meet him and I was so excited to see him as well. I got a little surprise at dinner. Scott had brought a lady with him, who he introduced as Catheryn. I thought she was just somebody he worked with. We said hello and I started asking her how she got involved in the foundation as she said she had just started working there. She then told me she was John London’s wife. John London is the other dad who started up Solving Kids’ Cancer with Scott. “Oh my god. You’re Penelope’s mom.” I said tearing up. I grabbed her for a hug. I know their story. It like ours, does not have a happy ending. Penelople’s parents fought with everything and more to save their precious little girl. Oh, how I wish that mama still had her baby girl. I should have known there was a reason when the second I saw the woman standing before me, that I was so drawn to her. It was because her eyes, looked exactly like mine. They burned with pain and beauty right into my soul. We had a great dinner. Which now I’m thinking, really, a great dinner? How can that be? It’s the kind of dinner that is always sad. So fucking sad. The fact that 3 of us, were sitting there with dead children is about as sick of a joke as you can get. It will never be a dinner where we carelessly drink our “hectic” day away without a care in the world, like everyone around us seemed to be doing. It will never be a dinner full of so much laugher and joy. It will always be a dinner full of sorrow, pain, love and survival. We don’t get to have normal dinners ever again. And I would never want to because normal to me will never exist. I have accepted that. I am making my own new fucking normal. I was thankful for not having to sit through a dinner and fake it. I don’t do those dinners ever anyway, because I just cannot. I am careful about the company I surround myself with. I was glad to be in the company that I was, even under our circumstances. We left that dinner and I looked at Stacy and said, “That man. (meaning Scott Kennedy) makes me want to move to New York and raise a billion dollars for childhood cancer.” In other words, he is incredible. I am so thankful to have him as a mentor and a friend.
Stacy left today. I was sad to see her go. I need to end this here. I’m beyond wiped. I love you baby. I miss you. Please, I hope you are safe.
xxoo

Fuels in the fire. Burn baby, burn.

I’m writing today to you all because I have a lot of fuels in the fire. I know I am supposed to be enjoying my family beach time, but being busy is helpful to me as well. First of all, last night I had the chance to go and look at all of the pictures that the amazingly talented, Emily Carroll, took at Ronan’s Fundraiser, and posted to her Facebook page. The link is on my Facebook page as well. I cannot tell you what an out of body experience it was for me to see all of your beautiful faces, most of whom I didn’t know, supporting us. I cried the entire time I looked through them. It is was beyond hard for me, to know that all of you were there because of the love you have for our family and because our little boy is dead. Can you put yourself in my shoes for one minute? Just take one minute, close your eyes, and think of your child dying. In that one minute, allow yourself to experience the pain I feel, my family feels, every second of the day. Take this one minute of pain and know this is why you all have taken it upon yourselves to inject yourself into our lives, when most of you don’t even know us. Take a minute to think about what amazing human beings that makes you and be proud of who you are. You all know there is more to life then the superficial things that surround us. You all get the bigger picture and you all know you are about to help me change this world and the way most people live with their eyes closed and lack of passion. You all have made me beyond proud and honored to have your love and support.
Ronan lived everyday of his life as if it was his last, without ever knowing that he would only get to be on this earth for almost 4 short years. Maybe deep down, in his old little soul, he did know this, which is why he made everyday a party and gave us so much happiness. He lived his life to the fullest, the way everyone should. I can guarantee you, if Ronan would have grown into an adult, the way he should have, he would have changed the world in some way shape or form. He would have had such a huge impact, as it was what he was put on this earth to do. Look at how much he has done with his life in the short amount of time that he did get to be here. His life was taken away from him, but I still believe he was meant to change it. I will never stop believing in the power of my son and his big blue eyes. The connection that Ronan and I have was so beyond deep, that it is beyond this life. I know it is him who is pushing me to keep going with his mission, his life, and his soul. I know what he wants me of me and every idea that I have, I am going to fight for it. Every goal I want to reach, I am going to fight for it. Every breath that I have to take, when I don’t want to anymore, I will fight for it. He is surrounding me still and I cannot rest until things in this world start to change. Ronan wants to be the voice for childhood cancer, so someday, children will not have to suffer and lose their lives the way he did. Ronan wants all parents to know that you should never take a day for granted with your kids and that the little stuff, really does not matter. He wants to help make parents, better parents. He wants all children to be loved as much as he was, because he knows how precious life is and he would give anything to be back here with us, where he was loved every second of his life. I gave my whole heart, body, mind and soul, to Ronan from the time he was born. I think deep down, I knew that I wasn’t going to get to have him forever which is why our connection was so deep and so different. I gave him a lifetime of love in his almost 4 short years that he was here. I will forever be heartbroken and feel like we were robbed of the most amazing child, but that his fight has to continue on.
Back to my fuels in the fire. I have a lot of things to take care of in regards to Ronan’s Foundation when we get back to Arizona. I am going to pour my heart and soul into it. Some things that I want to see happen are the following:
I want to make The Brightest Star in the Sky a yearly event. I want to make it huge. The amazing women who put it on for us this year are completely invested in our cause and for that, I cannot say thank you enough. I cannot wait to be involved with you all and to work with you to make it spectacular. I cannot wait to watch how it evolves and grows into something that everyone knows about and I have all of you beautiful woman to thank for getting this started. This would have not happened without you and for that I will forever be grateful.
I want to find a big voice for Childhood Cancer. People worship the power of celebrities so much, and as much power as they have, why hasn’t anyone stepped up to the plate to start a movement for Childhood Cancer? I know a lot of celebrities support St. Judes, which is amazing, by why not just Childhood Cancer in general??
Also, Yoplait. They change all of their lid colors to pink in October, which is also amazing, so why not Yellow for the month of September for Childhood Cancer Awareness?? I don’t have their contact info yet, so if anyone knows of it, please email me at mayawoody@gmail.com
I think the more people they hear from, the more they would be willing to listen. A movement has to start and it has to start now. The sooner the better as we all know when  you are dealing with Childhood Cancer, time is not on your side.
Lastly, I wanted to tell you that last night I did dream of Ronan. I could cry just telling you about it. I was pushing him on a raft, he had hair, and he was laughing and happy. In my dream, he was alive, but I was also talking to people about his death. My childhood friends, Missy and Mandy were in it and we were on Missy’s farm with Ronan running around. My friend, Lisa, was in it and I was hugging her about Ronan dying. It was a dream where life and death both existed, but they were both beautiful. I am so thankful for my dream last night and I didn’t take my Ambien to go to sleep. I didn’t fall asleep until about 3 a.m. but at least I got to see my sweet baby boy. It was the best thing to happen to me in a long time.
That is all for today my friends. I have been getting a lot of emails also about getting bracelets to out of state peeps. Once I figure this out, I promise I will let you know. Just give me a few days:) Thanks for your support and love, always. Have a good day, my friends. Love you all.
xoxo

Katie Couric, anyone??

Somebody sent me this email. I think it’s worth a shot. Who’s in??  Katie Couric is getting her own daytime show,  Launching SEPTEMBER 2012!! Let’s get her to hear your story! You are the best writer. She WILL connect with you and we will bombbard them w/ letters.

Cancer is already close to her heart. I know it was had to lose her husband, but she wont believe the story you can tell.  And launtching in September! ! It’s a sign!!
Let’s launtch opperation : awarness and let’s get to Katie Or Ellen!! ( you have your army!)
I need to be a part!
Reading Lala -Grace website I need to help!
Lori
I will always remember Ronan. I just can’t believe out of thousands of pictures I looked at on the gap web-site looking for my own kids. I found your guy and his eyes burned his beauty into my soul.

Somebody has to listen. Let me know if anyone can find her contact info. Awareness= A Cure!!!

xoxo

My baby did not deserve to die. No child does. I have to find someone to listen and to help these babies!