Tag: Maya’s Mafia

Last Day! VOTE, VOTE, VOTE!!!!!!!!!!!!

 

 

 

 

 

 

Voting ends tomorrow and it’s neck and neck. Vote if you have not, thank you if you have, but let’s keep spreading the word!! Then I will finally shut up about this contest:) Thanks lovelies!!

Regardless if I win, I am honored to have been nominated. Thank you to the person who nominated me, thank you to all the people who have voted and spread the word, thank you for being the most amazing voices for Ronan. We are going to move mountains with his LOVE!!!!
http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson

 

 

 

 

 

 

Because golfing in a TuTu is sometimes necessary

Ronan. Hi baby. I missed you today so much that at times I felt that I couldn’t breathe. I woke up early for not having slept well the night before, but I was ready to start the day anyway. I was tired, but my mind refused to be still. I got up, showered, dressed, and ran out the door. I got a few errands done, ran into the grocery store and came home to make breakfast for your brothers and cousins. We all sat around the table and ate, laughed and talked. It was hard for me to sit there without you, but I did it because it was important to your brothers. It didn’t feel good. Does that make me a bad mama? I don’t know. It would seem like simple things like this would make me happy. They should, right?? Maybe someday, but not now. Your brothers ate huge breakfast which was important as they had their first basketball game at The Village to play. I fed them, they got ready and we all headed out the door. I had to walk through those doors without you today and it was gut wrenching. You used to love to go watch your brothers basketball games. You were their little mascot. I tried to stay focused on watching your brothers, but I was so distracted by you not being there. And there were sooooo many kids everywhere. I could not stop the screaming from inside my head as to why you were not with us. Why did you have to die from Cancer? All of these healthy kids, were running about. I just kept thinking, they have NO idea how lucky they are. I kept wondering if their parents did? If their parents knew how lucky they were to have healthy, happy, carefree, kids. Or is it something that was more of a right, not a privilege to them? I don’t know, but I really I do know. I know how lucky parents are who have healthy kids. How a day should never pass without being grateful for this gift. I know this because of the sickness you fought, for the life we lived in the hospital, and for your death. Your death that is now teaching thousands of people how precious life really is. It seems so unfair that you had to be the one to teach us all this lesson. Why couldn’t it have been me? I would have gladly died in your place. I wish this everyday.

Ro baby. I think I started this a few days ago. Everything is blurry again. The days continue to drag on and on. We’ve kept busy. Your brothers amaze me everyday. You always hear how kids are so resilient, but now I am witnessing it first hand. Both of your brothers are thriving in school. Doing so well and they are such good boys. They are coming home with good grades, both are getting praises from their teachers, and they seem happy. I am glad they won’t know the pain of losing you in the way that I do. I would never want them to feel even a quarter of the way that I do. I am trying really hard to balance their therapy, while making sure they feel somewhat normal. This means play dates, sleep overs, the same chores, responsibilities, and getting them back into a routine of structure and love. I know they hurt, I know they miss you, I know they are sad and confused…. but it is not consuming them. They were really well-adjusted boys before all of this, and I know that is a big part of why they actually seem like they are going to be o.k. It is all I can hope for at this point. I don’t want their lives to be ruined over losing you. I want them to learn from this and understand how precious life really is. They get it. They got it before all of this which seems so unfair. FUCK. I hate trying to justify any of this, because they were already going to turn out to be amazing men anyway. So what. Now they get to become better boys because you died? It’s not right, Ro. I sometimes have to try to rationalize this in any way I can, just to keep me moving forward. The truth is, they should not have to be learning this lesson. There is no rationalizing this because it is just fucked up. Plain and simple.

This weekend was busy. I don’t know what we filled it with, but it was filled. Basketball game, Football on T.V., Inferno Hiking, things around the house. I went golfing on Saturday night. Glow in the dark golfing on a lit up course. If there is one thing I’ve always known about life, it’s that people take it way too seriously. And when you become a “grown up,” it is easy to get lost in the shuffle of responsibilities. I’ve always had a pretty good idea about how to balance both things… silliness and seriousness. I’m a big kid at heart, which is probably why I relate so well to babies/toddlers/children/ and teen-agers. I like fun. I used to be so fun. I used to love to live, which is why Saturday night was so necessary. I saw something in Phoenix Magazine about a glow in the dark golf tournament that was being held. Um… yes please! I called to register, but all the slots were full. I got a call Saturday morning, telling me that two spots had opened up and the man asked if I wanted them. I said, of course. I called up Liz to see if she wanted to go with me as I have been missing her since our summer in Coronado ended. We both have been so busy, so it seemed like the perfect excuse to spend some time with her. Liz does not golf, but she was game anyway. She told me her friend, Heather, wanted to come as well. I met Heather over the summer and she is a doll. I told her to bring her. I told Liz to be prepared as I had somehow gotten it into my head that it was necessary to go glow in the dark golfing, in a TuTu. Why the heck not? My lovely, Katie, just happens to carry TuTu’s at her store. She took a pink and a purple one, off her mannequins for me. I came home, threw on the purple one, for you of course, a black shirt and black flats. Liz about died when I opened the door and I think she may have called me a dork. I told her that she was wearing one too, so she needed to be quiet. Golfing in a TuTu. I cannot believe somebody hasn’t thought of this before. It should be mandatory. It was so much fun and made our golfing night, even better. I did this for you. And for me. Because my life is so sad now, but being in a TuTu for a few hours while whacking a golf ball on a dark glow in the dark course, made me smile and think of you and how much you would have loved being with me. I totally want to put together a golf tournament for you with this idea. All the ladies in TuTu’s just for you. I’ll make the men all wear fake mustaches or something silly like that. The lesson being, life can be hard and for some, harder than others……. but you should always remember how to have fun, even if it is in the form of acting like an 8-year-old child. Adults often forget how to do this as the age thing seems to cripple them. Age is just a number, nothing more. I promise to always try to channel my inner child for you by doing silly things like golfing in a TuTu. It makes me a better mama. And the fact that you had your childhood stolen from you makes me want to channel my inner child that much more. To make up for the life that you never fully got to live. I’m sorry, Ro.

I spent today, keeping busy. I actually got my booty up out of bed at 5 a.m. and went to boot camp. I had lunch with Tammy yesterday and told her if I got some decent sleep, that I would come to her class this morning. I got a good 5 hours in, which I seem to do just fine on. I went to her class and I am so glad I did. I miss it so much. I’m paying the price already though as I am so sore, I can hardly walk.

I’m having a really hard time being home during the day, alone. It is so quiet without you. Too quiet. I have been going to public places when I have emails to get through, bills to open, checks to write, etc….. Today, I went to my Safeway and sat in the Starbucks with my headphones blaring music, while I pounded out email after email. I had two really sweet women come up who recognized me to say Hello and how sorry they were. I cried talking to them both. I couldn’t help it as I was an emotional mess pretty much the entire day. I was glad they said hello as it is always nice to know how many people are thinking about you. I finished up my things and headed off to get a few more things done. Lots of “shit list,” things checked off today. Yay me.

I spent a lot of the day, doing things for others today. Things that should feel really good to me, but they don’t. As I was walking out of Staples, and to my car, I felt like the world was going to swallow me whole. I started bawling. Choking on my tears and feeling like I was surly going to suffocate to death. I was engulfed in a world of loneliness, sadness, pain, and just plain missing my little partner in crime. I somehow made it to my car, but it took me a while to calm down. I drove home but cried the whole way there. Once I got home, I tried to be productive. I am always trying to avoid the silence. I talked to Fernanda and she let me vent/sob to her. I told her over and over that I could not believe you are gone. I asked her why you because I will never understand. I told her how I had spent my day, doing all of these great things, like helping others which is what I know I am meant to do…. but it is never going to fill the huge hole in my heart. She said something like the pain will never go away, but I will learn to live with it. I told her what a shitty way to live. Because it is. To live in constant agony and pain; and knowing that I will never feel better, but this is my new normal. FUCK YOU WORLD. I hate this life. I hate this life without you and I just want you back. But you are not coming back so I am just supposed to continue on, fighting for any ounce of happiness that comes my way once in a blue moon? I want to help others, and I hope someday I can feel something from it. But as of now, it just feels like a fire that lives inside of me. It burns all day long and I feel like it is coming from you. You are the one pushing me forward, to make a difference. You are the one, pushing me to do as many things as I can to help where I am needed, to continue on to fight for all of the kids who are affected by cancer. There are so many out there, Ro. So many sweet babies who are going through this. I had no idea….. I feel like such a fool. My happiness was so simple before and I really did know how lucky we were. I thanked God for my life everyday. I was not ungrateful, mean, or a bad person. I was a good person before all of this but now I have to become better??? I know I do. I know I do for you. As much as I hate all of this pain, I know I still have you to answer to, Ro. You want things in this world to change. I have to be the one to help change them for you, because I want you to be proud of me. I promise to make you proud of me.

I’ve got to go now little one. It’s been a hard day. An awful day of feeling like I am buried alive and drowning all at the same time. I miss you. I love you to the moon and back and hope you are safe. G’nite my little “not spicy,” monkey boy. Sweet dreams, Ro.

xoxo

P.S. This makes me sick to my stomach. Did you know that pediatric cancer is the #1 disease killer in the US? Pediatric cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, pediatric cancer research gets the least financial funding. Please help spread this info and save our babies!!!

I am starting a new trend. I think every girl should golf in a mother fucking TuTu. It rules. Go see Katie@Garage. She has the BEST ones.

Hell on Earth

Ronan. 3:15, I’m up. Wide awake. It’s now 3:45. I tried to go back to sleep. Didn’t work. I’m asleep on Liam’s top bunk bed. I fell asleep with Quinn up here. He is so cuddly. I think Liam is asleep with your daddy in our room. They were watching a movie tonight in there. Today was an o.k. day. Just o.k. I missed you a lot. Too much to do much of anything. So I didn’t. At one point, I saw Liam sitting outside on our porch swing, all by himself. I went out there to sit with him. He was sad and tried to hide his face as I saw the tears starting up. I asked him what was wrong. He told me he was just sad because he misses you. I put my arm around him and started to cry. I told him I was sorry. I told him that we tried everything to save you, but you were too sick. I told him I miss you too. Every second of the day. We talked about how boring the world is without you. There was nothing I could do in that moment to make him feel better. It broke my heart. The only thing that would make us better is for you to come back here. But we all know that is not happening.

The weekends are hard without you. On Friday, your daddy asked if I was excited for the weekend. I just looked at him and said, “No.” Why would I be? Excitement is something that I no longer feel for life. Life just is. As of now, it is empty and I am just thankful to pass the time. We had Kenny, Stacy and their kiddos over tonight for dinner. Right before they got here, I had Liam go out and get the mail. A big packet from Camelback Pediatrics came. I knew what it was, as I had Dr. Campbell to send it to me. It was a copy of your chart from their office. When I was there with your brothers the other day, as the two of us sat and cried about you, I asked her what they would do with your chart now. She said it was right there, still in with your brothers. I asked her to send me a copy so I could always have it. Tonight, as I opened it up my hands were shaking and I took a deep breath and flipped through it. I thought to myself…. there must be something in there, from when you were younger….. a sign that you had cancer. Nothing. A cough here and there, some red, gooey eyes a couple of times, you were exposed to strep. Nothing major. No abdominal pain, no pain in your joints, no discomfort walking or anything like that. I just don’t understand any of this. There was a letter to Dr. Eshun from the Dr. that did your radiology before you passed away. It said things like, “The patient appears skinny and has not eaten in 3 days, he is in a severe amount of pain……” Reading that, it was almost like I wasn’t even reading about you. This couldn’t possibly be about my healthy, perfect, baby boy. But it was. I winced out in pain from reading all of this as the thought of you in pain, is too much for me to handle. I remember though. Those last days where I think I rubbed your little leg for almost a week straight. The last few days, everywhere was hurting. I’m so sorry, Ronan. I’m so sorry for everything we tried to do to save you and it just wasn’t enough. I miss you so.

I’ve moved back into our room… clock is slowing ticking away. 4:45. I took Liam and walked him to the top bunk of his bed. “Thanks mom, I love you.” Words that are so sweet but also rip my heart out. Words that I know I’ll never hear from you again. I still cannot sleep and your daddy is so annoyed at me. He doesn’t get the whole not being able to sleep thing as he has no problems with sleep, whatsoever. He is so peaceful that I may roll over and punch him. His peacefulness is annoying me tonight. I want to be peaceful. I want to sleep without this Ambien. I want you back, Ro. So badly. I wonder if the whole not sleeping thing is something that happens to every mom that loses a child. I wonder if the dad’s are able to sleep fine. That would be interesting to find out.

My girlfriends from back home are walking in The Relay for Life tonight. I think they have been walking all evening and they won’t stop until tomorrow morning. They are doing it in Ronan’s honor. I wish I were there. They had purple tutu’s made and shirts that said, “Maya’s Mafia.” So cute. I am so appreciative of all of the love and support from back home. From everywhere. Thank you so much to all of you who worked so hard to make the event such a success. I just can’t believe we are doing it in his memory now, not his honor. That was hard for me to see. I think I may be sick.

Ro baby. Hi. That was from last night. UGH. I tried to be productive today. I really did. I got up, went out, ran some errands, and came home and hid in bed all day long. I didn’t get up again until we got ready to go over to your cousins for dinner. I only feel worse for having stayed in bed all day. It never makes me feel better but the thought of being out in the world, being productive, being present, was too much for me to deal with today. Your daddy woke up saying he had a nightmare last night. My response was, “How could your nightmare be any worse than our reality?” I know the logical answer to that, but it doesn’t seem to matter. It won’t make this pain any less.

I don’t know how you go on, existing in this world after losing a child. I guess it happens, because obviously people do it. And some even do it really well. I am going to try my best to find this out because I could easily see how this pain could take over your life and drown one in a darkness. It could happen very easily. I could see how one could just walk away from the life they are supposed to go back to living. The life of carpools, laughter, happy moms everywhere, cooking dinners, play dates, sunny skies, vacations, family game nights, and friends. It is so hard to be surrounded by happiness, everywhere, when you are constantly in pain and agony. It makes me want to run away and move to a place like, Port Moresby, which is known as Hell on Earth. It is a place for poor and hungry people, who sell their souls to the devil, who have nothing to give in exchange. Fine. That may be a little dramatic…. but existing in a world after losing a child, feels like Hell on Earth. And I don’t have to go all the way to New Guinea to find it.

I’m trying a new sleep medicine tonight. Restoril. I think Ambien was a bit too much for me. I don’t like the way it makes me feel. We shall see about this new one. I hate being on all of this shit. It is so not me. One day, I hope to go back to the way I was before this nightmare. A clean life without prescription meds. They scare me and I could see how a person could become addicted to them. It’s a slippery slope, my friends.

Alright, Ro. I’m going to try to get some rest. I miss you so much, little man. I hope you are safe. Sweet dreams.

xoxo

I wish cancer got cancer and died

Ronan. Night is setting in. Another day gone without you here. It was as good of a day as I could have possibly made it. It’s just me here with your brothers. No breaks, no running, no time to sit in a corner and cry about missing you. The show must go on. We all slept in. I had a hard time getting to sleep last night, even with my Ambien. My mind was racing with thoughts of you and I felt as though I couldn’t breathe. I felt as if I was going to have a full fledged panic attack right here in my bed. I stayed as calm as I possibly could and talked myself down from the ledge. I actually just started counting in my head. Counting until everything went black and I fell into my dreamless, medicated, state of sleep. I woke up to the sound of your brothers. I got up as soon as I heard them as I knew that this was not a day to hide in my bed because I am the adult here. I am the only one around to take care of them. I went straight into mommy mode. Late breakfast made, dishes and laundry done, had them do some work in their workbooks, packed up our beach bag and headed outside with them. We played football for about an hour in the sand. I broke up the fights and arguing over plays. At one point, Liam told me I cheated at the game. I laughed at this and told him it was impossible to cheat at a game you were playing, when you didn’t know the rules. All this football talk had my head spinning and I was penalized for a play that I had no idea about. I was a good sport, but geez! That brother of yours, Liam, is a competitive little kid. He was so serious about the game. Quinn did his usual laughing at everything and Liam ended up tackling him to the ground and proceeded to throw sand in his face. That was the end of the football game.

Quinn wanted to swim in the pool but Liam did not. I took Quinn up to swim as I watched Liam from the pool, digging in the sand all by himself. It made me sad. He didn’t stay at the beach long and soon came to join us at the pool. I swam and played Marco Polo with them, I let them both get on my shoulders as we splashed around in the water. I got out after a while to warm up. That’s when I saw him. The little boy who looked like a carbon copy of you, except with dark hair. He had your same piercing blue eyes and delicate features. He was in the little pool, that you swam in just 2 years ago and he was about your same age then. I almost threw up as I watched him do the same things you did in that pool. He jumped off the edge, into the water, completely fearless just as you were. He threw a toy my way and I bent down to get it for him as the Nanny apologized in Spanish. The dad sat on the sidelines, working away on his laptop. I started to cry and it took everything I had not to walk up to that dad and ask him to please just open his eyes and to play with his little boy. Not out of judgement, but out of the sheer innocence and beauty of watching his baby boy play so carefree and innocently. It was such a painful gift for me to see today. I swore as if I was staring at you. This was me, 2 years ago, in that pool, playing with you. I sat there and watched the little boy for a good 15 minutes and then decided that I couldn’t take anymore. I gathered up your brothers and we headed upstairs to the condo. I took a shower, told them to get dressed so we could go out to dinner. They didn’t want to go, but I had to get off of this island for a bit.

We ended up at a pizza restaurant and Quinn said he had remembered being there with you last year. He was right. His memory amazes me. I sat with your brothers and we talked about a lot of things. About life, about you, about the importance of things. I asked them what the most important things in life to them are. They both said you. I said yes, they were right. I also told them about the importance of helping others and the importance of always taking care of each other. I told them how lucky they were to have one another. It was a nice dinner with them.

After dinner, I took them to Target to spend their money that they have saved up from their birthday. We decided to get some movies to watch tonight. As we were leaving Target, your brothers were smiling and so full of giggles. They both told me thank you and Liam stood up on his tippy toes to give me a kiss on the lips. I was instantly taken aback by the happiness I saw in his eyes. He has missed me. I have missed him. I tried to let myself get caught up in the moment but I just couldn’t let go of the pain. I’m constantly fighting with the pain that refuses to leave my side, even with the beautiful Target moment that happened tonight.

Once we got back home, we popped in a movie. “Little Fockers.” All 3 of us thought it was funny and you know what a sucker I am for that Robert De Niro guy. I told your brothers all about him and how they could watch one of my favorite movies, “Casino,” when they turned 15. They wanted to know what they couldn’t watch it now. I told them because it wasn’t appropriate for their little eyes or ears. They have plenty of time to learn about the amazingness of Robert De Niro. All in due time, my little one.

All is quiet here except for the screaming inside of my head. Everything I did today took so much energy and effort on my part. Trying to nurture two little boys, when you have absolutely nothing to give, is hard. I mean really hard. I gave it my all today. I gave them everything I had which seemed to be more than enough. I made sure they both had a good day and put myself on hold. I don’t have a choice right now. For this week, while your daddy is gone and I am alone with the boys, I have to put myself on hold. I cannot stay in bed all day, I cannot scream, cry, or break dishes. Thank god that I am a calm person by nature. I never knew how much that would really pay off for me in life. It certainly has now. If I didn’t have my calmness, I would be totally screwed. Speaking of calm and screwed.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU,CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yeah. I’ve kind of been holding that in all day. I haven’t be able to run in a couple of days so that needed to come out. It almost made me feel better, but not really. I’m still on this Neuroblastoma website that is kind of like a support group for parents. I get emailed with things during the day as the questions go to everyone who is in the group. Sometimes parents are  asking for advice on treatments, hospitals, doctors, sometimes new children are asking to be prayed for, sometimes prayers are asked for kids like you, Ro, when you were close to death. I cannot seem to unsubscribe to this server list and as much as I’ve tried not to…. I may be borderline obsessed with it. When I see a kid on there, same as you, Stage 4, I’ll go over all the details and protocols that they are doing than I’ll usually end up screaming at your daddy, “Why didn’t we do this?” I know this is not healthy, but I’m like a freaking crack addict except my drug of choice is Neuroblastoma. A mom called me from this list and has asked me advice for her son, who I sat across from at Sloan. Her little boy, Jaxon is not doing well. I told her to get contact Dr. Gisele Sholler to get him started on the Nifurtimox trial asap. His disease is progressing rapidly and he is having a hard time walking. Sounds so much like you. She also asked me about the radiation to help his pain. I told her to start that ASAP. We have all learned that time is the last thing on your fucking side with this disease. I also told her about Dr. Mosse at Chop. Because she is a GODDESS and Neuroblastoma should be scared to death of that woman. I have a feeling about her and the way she is going to revolutionize the treatment for this disease. I hope that woman gets everything and more in her life that she has ever wanted. I know you will be watching out for her, Ro. I’ll never forget the look in her eyes when she had to tell us you couldn’t do the treatment because your MIBG activity was too active and because of how full your bone marrow was again. She locked eyes with mine and wouldn’t let go all while having to deliver the most awful news. I’ll never forget anything about that day. The rain that started for a few minutes after she told us. Daddy’s tears. Me, who could do nothing. I couldn’t cry because Daddy was crying and I had to hold it together for him. It was only later, after I left the room to talk to Dr. Mosse about some other questions that I had that I allowed myself to cry a little. FUCK. That quality of life word kept coming up. What the fuck does that even mean?? I had just gotten so used to all the cancer lingo and now this new word was being thrown in my face over and over again. It seemed like a nice little term, all wrapped up in a pretty package, and then you go to unwrap the bow, and “POP!!” That big “quality of life,” word is basically a nice way of saying “You’re FUCKED.” Well, that’s my interpretation of it at least. I’m not here to sugar coat anything, people. I’m not here to tippy toe around the fact that everyone knew we were fucked, but you know you can’t give up on that whole “HOPE,” thing. Even I couldn’t give up on it until that Mother’s Day when I knew your little body was failing you, Ro. It was too late to get you to San Diego. Our time had run out. FUCKFUCKFUCKFUCKFUCK. I am so sorry. You know I would have taken you to Switzerland if I could have. We would have taken you anywhere. But your little body couldn’t take it anymore. I know your soul wanted to fight on, but we had to listen and respect what your body wanted us to do. And it was tired. And you were tired. And it was time for you to just go to sleep; just like I asked.

I don’t remember how I even got started rambling on and on about the above things. I’m waiting for the day that all of you lovelies just up and disappear because 1) You’re going to get tired of hearing me talk about the same things over and over 2) because you just want to go on with your happy lives or 3) because this story is just too sad and dark, or I use too many swear words. If number 3) applies to you, then peace the fuck out. Somebody sent me a super rude email a few days ago. I’m going have to start a file for “The Haters.” It said things like…..” You are embarrassing yourself and your friends aren’t telling you the truth. You need to stop writing and write in a journal, because everyone I know has stopped reading what you are writing. And the people who are reading, are not moms. It is a joke that they are telling you how amazing you are.” I took the time to tell her, obviously she didn’t know any of my true friends, because that was bullshit and to also tell her that I’m glad she stopped reading this as well as her friends because this was not the right blog for them. They need to go seek out a blog about Unicorns, Butterfly’s, and Puppies. Then go blow it out their asses. You don’t like this reality? You don’t like these swear words? You don’t like my truth? The truth that anyone in my situation would be thinking in their heads, but are too scared to put it out there. Ohhhhh…. my bad. I’m so sorry to have offended you with all this reality. A reality, sometimes a death sentence that is handed out every year in the form of 12,500 babies, toddler, kids, teenagers. Yes, Yes, I agree. Let’s choose to ignore this and go back on living inside of our little bubble. I totally get what kind of people you are and I want NOTHING to do with you.

Through all of my pain, sadness, ranting, raving, anger, and swear words, will come something beautiful… I promise. Right now, I am thinking about the Butterfly Life Cycle. I feel as if now, I am in my little egg. In hideout… but plotting a plan. I will soon move into the Catepillar stage…. becoming somebody stronger and new….. I will then go into the Pupa Stage, where I will build my protective shield and completely transform. I will then burst with color while becoming the beautiful butterfly that I know exists inside of me. This beautiful butterfly will revile herself when the time is right and the perfect plan is in place to do some major ass kicking to cancers ass. This beautiful butterfly will still say the word, “FUCK,” when she feels like it though. Deal with it or go away. You have no idea how hard it is to go though what we are going through, even as you read this blog and think you do. If you don’t like what I’m writing, stop being offended and stop reading. Then go volunteer at a hospital in the Oncology Unit for a month and I will be waiting with open arms as you run back and tell me how sorry you are. Or go volunteer and feel nothing. No judgement there at all. But my arms will no longer be open to you. Go home and live your little sheltered life and forget about these beautiful children who have cancer or have died from it. Forget about Ronan. I dare you .

Also, the reason I don’t write in a journal and I choose to share all of this with all of you 1,248million and something people….. I started this as a way to keep everyone updated on Ronan. It started off that way for a while, but then this force kind of came in and took over. This blog pretty much took on a life of its own and being honest and open about everything felt good to me. It was therapeutic and I feel like I have such beautiful story to tell with Ronan; for as ugly as it may be…. just writing out his name for you all to read is beautiful enough to me. I want you to feel my pain, his pain, I want you to be inspired, sad, mad, offended, thankful, scared, educated,….. I want you to live this through me because I know Ronan will make you all better people, better moms, more appreciative, he will teach you the true meaning of life. If, you want his lessons that is. Free will here. Nobody is forcing anything. My ultimate goal is to have you all on our side when we raise awareness for Ronan and Neuroblastoma. Anyway you can help, whatever little thing you can do, even if it just means wearing his bracelet, commenting on my blog, or spreading his story around. That is such a beautiful gift to me. The power of people can be very persuasive. I believe we can make something amazing come from Ronan’s death, make him so proud and celebrate the way we did after we finished “Round 5,” of his chemo. It was just the two of us at home, celebrating. He ran out to the garage to the refrigerator where we keep our Gatorade, sodas, and beers. He came running back in, so excited with 2 cold Coors Lights in his hands. He goes, “Here mama!” “Cheers!” I was so shocked but it was so innocent and cute and he was so excited. I took those 2 Coors Lights in the middle of the day and opened them for us. We both took a couple of sips and then went on with our Star Wars Game. I’ll never forget that day. He seriously was so much older than 3. That boy always loved his beer. So much that Woody would have to hide it from him. Little devil.

I know Ronan. I know you were here for such a short time to teach me some things. Because I have learned so much in such a short amount of time from you. I’m just getting started. I can’t wait to see what journey you have planned out now for me. It is all in your hands. Everything that happens from here on out is due to you. You loved me too much to just walk away, to just leave me behind. We were one. We are one. I’ll follow you into the dark. I’ll follow you to China if that’s where we need to go. I’d much prefer Thailand though….. can you throw me some signs to get me there:) Let’s do this baby boy. Together forever. Your little body was just a shell, it was the most beautiful shell that ever lived on this earth but you know what is even more amazing? The soul that lives outside of that shell. So light, so free, so happy because you get to take care of all of us. You always wanted to be the boss and we pretty much let you. I promise to make you proud, Ronan. I know you would have not been offended by my potty mouth. Words are words. If anything we should turn the world CANCER into a swear word. That is the most offensive word that exists.

OK BABY. This may have turned into a little crazy night for you with all my blabbing about this and that. And no wonder they say you should never operate a car on this Ambien shit! You should not even be allowed to write on a blog on it! Whatever. Power to the Peeps of The Rockstar Ronan Fan Club. Whomever chooses to stick about, they are your truest fans. I’m not going to stop fighting until some drastic improvements come about and someday a cure is found. This is my promise to you RO. For you and all the other kids fighting for their lives. After this summer, it’s time to get our plan in place. Soccer mom by day. Maya’s Mafia by night.

I love you, Ro. My little “not spicy,” monkey blue eyed  brad pitt baby boy who would melt you with one of his infamous winks. Sweet dreams angel. I hope you are safe. You are forever loved.

  • Childhood cancers are the #1 disease killer of children – more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
  • Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
  • The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
  • One in every 330 Americans will develop cancer by the age of 20. On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. In the U.S., about 46 children and adolescents are diagnosed with cancer every weekday.
  • While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
  • Childhood leukemia (making up the largest group of childhood cancers) was once a certain death sentence, but now can be cured almost 80% of the time.
  • Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
  • Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin’s lymphoma.

A little seal and a hummingbird

Ronan. It’s only been a week since you left. How can that possibly be? It feels like you left such a long time ago. I think about you all the time. You are never not in my thoughts. I got through another day without you. I don’t know how; but I did. I took Liam and Quinn back to school today. We went in late and I was nervous for them to go back. As we walked in, I explained how some of the kids might ask about you, and I tried to prep them on what to say. I wanted to prepare them as much as possible. They both seemed o.k. I could tell Quinn was more nervous than Liam. Once we got to the classroom, they both seemed fine and their friends were happy to have them back. I left them there feeling like it was their first day of school; my heart was sad but I know normalcy is important for them now. We have such little of that in our life with you being gone. I have to slowly start picking up the pieces and I feel like getting them back to school for the time that they have left will be a good thing. They are such strong little boys. I know you are so proud of them.

After I dropped off Liam and Quinn, I ran some errands with your Nana. It felt weird to be out but I constantly feel the need to be busy. At one point we were at the cash register somewhere and I said out loud,  “I can’t believe he is gone.” I talk to myself all the time now. My hands shake all of the time. I talk to you out loud a lot too. We all tell you goodnight every night. I still feel like you can hear us. I took your Nana to get her tattoo today. She got 3 stars on her foot for you, Liam, and Quinn. It turned out so beautiful. Afterwords, we went to lunch. We were supposed to meet Tricia and Marisa at Wildflower, but I ended up going to the wrong location. My head is still not on straight. Fernanda called while we were sitting in a booth together. I stepped outside to talk to her for a few minutes. I ended up bawling my head off and I kept saying to her that I didn’t understand how your little heart could have just stopped, just like that. I mean it makes no sense at all; but I don’t even understand medically how it happens. How is it possible that you and your little life just stopped? You were so full of life and I will never understand how it was taken away so quickly. Just like that, in a blink of an eye. I’ll never forget when you were first diagnosed and your Daddy and I sat in a little room together and how scared he was. I remember grabbing him and saying, “Woody. If anyone can beat this, it’s him.” I had no doubt in my mind that you would grow up to be a healthy boy. I never in my wildest dreams thought this would have been the outcome. I don’t think anybody really did.

Once I returned home, I kept myself busy with stupid chores. I am putting together a hard core plan about how I am going to clean our already spotless house. How maybe if I scrub hard enough, it will pass the time more quickly. I’ve decided I will tackle the closet tomorrow. I know what this process is all about. I have already decided I am going clean every inch of this house until the only thing left to do is your room. The room that I walk past as little as possible during the days but I let me eyes drift over to your toys as I am expecting to see you in there playing. I am so scared of your room. But I know I have to go in there eventually. I will, after everything else is perfectly in place. Until then, I just simply cannot. My stomach instantly gets sick just thinking about it. I just need more time.

After Liam and Quinn came home from school, we had Luke and Lily over. We walked down to Uncle Jays and went swimming. Wesley and Laely came too. It was good for me to be around them today. I thought it was going to be hard, but there sweet souls soothed me. Well, maybe not soothed me as I don’t think there is anything that can do that right now. But it didn’t feel awful for me to be around them. Baby steps, baby. Baby steps.

Everyone around me is stumbling. I wish I could be blind to it but I’m not. Watching Liam, Quinn, and your Daddy is the hardest for me to see. Last night, after your service we were all walking out of The Desert Botanical Gardens together. There was a wishing fountain right before the parking lot. We all stopped and Liam threw in a coin. He said he wished for you to come back. I honestly thought I was going to crumble on the spot but Quinn distracted me by trying to steal the money out of the fountain. I gave him a quick talking to about how he couldn’t take the money out of the fountain because it was other people’s wishes. He then made some snarky comment about how wishes don’t come true. Fuck. I dug deep down and told him, that they indeed do come true, but I didn’t have the energy to finish the bullshit pep talk. How do you try to convince a 7-year-old who just sat though his baby brothers memorial service that by throwing a fucking penny in a fountain that what they wish for will come true. The truth is, you don’t. And if you do, you’re a better person than me. Or maybe just a better bullshitter:)

Your daddy asked me tonight when I was going to break. Or if I was just going to hold this all in until I finally explode. We are not in sync with our grieving process at all. I wonder, if this is normal? Am I holding it all together so he can grieve and I can be strong for him? Then when it is my turn, he will be able to be strong for me? Part of me thinks so. If we were both dealing with this, the same way, at the same time….. I don’t know how we would go on for Liam and Quinn. Don’t get me wrong. I have my moments when I sob like a baby. But I try my hardest to do this when I’m not around anyone else. I save it for the moments that I know you are closest to me and when I look to you for comfort. You are so good at comforting me, Ro. You still give me so much strength.

I have two pictures I am posting tonight. One, was taken by the insanely talented Emily Carroll. She came to capture some images from Ronan’s service last night. This hummingbird kept appearing in her camera. Do you know what they say about hummingbirds? I do. My dad taught me about he importance of Hummingbirds. They are special and the fact that this little guy was fluttering about during Ronan’s service.. well that speaks volumes in itself. Thanks for letting me know you were there, Ronan. And that you are o.k. Thank you for capturing this moment, Emily.

It is not commonly known that the fluttering wings of the hummingbird move in the pattern of an infinity symbol – further solidifying their symbolism of eternity, continuity, and infinity.

By observing the Hummingbird, we see they are seemingly tireless. Always actively seeking the sweetest nectar, they remind us to forever seek out the good in life and the beauty in each day.

Amazing migrators, some Hummingbirds are known to wing their way as far as 2000 miles to reach their destination. This quality reminds us to be persistent in the persuit of our dreams, and adopt the tenacity of the Hummingbird in our lives.

The Hummingbird animal totem is a messenger of hope and jubilation.

Hummingbird Animal Totems offer attributes like:

  • energy
  • vitality
  • joy
  • renewal
  • sincerity
  • healing
  • persistence
  • peace
  • infinity
  • agility
  • playfulness
  • loyalty
  • affection
 Need I say more? I don’t think so. The little signs are everywhere.
The last picture I am going to leave you with is one I took on my iPhone today while my mom was getting her tattoo done. I’m not crazy…. well at least not yet. Take a look at the white image where my mom is getting her ink done. I swear to god it looks like a little seal. The nose pointed to one of her stars, the flippers closer to her toes. Does anybody else see that??!!
I seriously think it was little Ronan’s spirit sitting with us today. After seeing this tonight on my camera, I am sure of it. I talked to him the entire day in my head. He never leaves my side. Thank you Ronan, for guiding me today. I know you know I am struggling with some things and how I am trying to figure out the path I am meant to take. You gave me a lot of answers today. I am going to follow your lead and listen to my heart and you. We are going to change the world baby. We are going to save others lives by finding a cure for this. I know it is our destiny. It was what we were meant to do in life. To help others, inspire others, teach others about what is REALLY important in life. Just to be better people in general. Let’s make this world a better place…. let’s find a cure for this Neuroblastoma bullshit by educating people and getting funding in place. I’m so going to be all over Yoplait soon. I am thinking they are my first target. If they can do pink ribbons for all of October on the top on their lids, the why the fuck can’t they do yellow for all of September. Mama’s mad. Mama’s on a mission. Somebody emailed me today and said they were ready to stand behind, “Maya’s Mafia.” That made me laugh out loud. I love it. I hope you are all game for this. If you stick behind my son and what we are about to do…. be ready for the most fulfilling journey of your life. Ronan had it all figured out by the almost the age of 4. I took very careful notes so I know all of his secrets, all of his tricks, and I now know what he was meant to do in this world. Just because he was so sickly robbed of his little life does not mean he cannot fulfill his dreams. I being his mama, his biggest fan, will get these things done for him. I’ll get by with a little help from my friends and all of his Rockstar Fans. I promise you. Amazing things are to come. Ronan was my gift that I am sharing with all of you and I am so thankful to do so. I know how much you all believe in him and know that he was meant to change the world. Start by helping me out anyway you can. Just getting his story out is the first step. This is going to take some time, but I want everyone to know about the most beautiful, bravest little boy, who could melt you with just one of his famous winks. FUCK YOU CANCER. You fucked up big time and you owe it to me that something good come out of this. We will start by raising awareness for your stupid ass disease that I had never in my life had heard of because I was uneducated and cocky. I’m sorry that ONLY 800 kids a year are diagnosed with this. 800 kids a year is more than plenty to fight for. So fuck you Neuroblastoma and your lack of education. I am about to blow your shit out of the water. You took my baby; so I’m not going to stop until somebody finally takes you, mother fucker.
Sooooooooo…… I think I got a little off track. Um yeah. It’s been way too long since I’ve said Fuck on my blog so I had to get a few of those out. And Ronan, you’re such a little badass now that you don’t even need earmuffs anymore buddy! I think you’ve earned your right to hear those words. I love you Ronan. We all love you so much. I told Quinn to dream about you tonight. I hope you visit him and you two play your little hearts out. Sweet dreams Ro baby. Sweet dreams my lovely friends. Hope your day tomorrow is full of all the little things my Ronan has left behind.
xoxo