No sugar coating necessary

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

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

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

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

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

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

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

xoxo

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

The summer of the Dolphins

Ronan. I’m not sure what I have written in these past few posts. I think they have been a little dark, scary, and sad though. I’m sorry. I had a better day today. I promise. I tried my best. We took your brothers for lunch and were deciding on going to the Zoo or to play football. They chose football. You would have loved it. You were missed by everyone. It still feels so strange, it just being the four of us. Not right at all. But we made the best of it that we could. After Football, your daddy and Liam went to run some errands. Quinny and I hung out here. As soon as they returned, I had a craving for Pinkberry. Quinn and I hopped in the car to drive to downtown San Diego to pick some up. As I was texting Liz to see if she wanted any, she told me to come over to the bench that she and her mom were sitting on, in front of the El Camino Pool. I parked and walked over with Quinn. Liz started to tell her mom to tell me what they had figured out about all the dolphins we have seen. Karen said no, not in front of Quinn. I sat and just watched the ocean. About 5 minutes later, Quinn spotted the dolphins. Liz started crying. Karen and I held her as the tears rolled down her cheeks. I wasn’t aware of what they had figured out, but I knew it had something to do with the dolphins, Ronan, and me. It has been a strange dolphin summer. Every time I am out by the ocean, they just appear. Liz told Karen tonight, if they appeared when I came over to sit down at the bench,she was going to freak out. They appeared and that is when she started to cry. I knew why. We all know why, Ro. It is your sign to me that you are o.k. That you are happy, playful, and loved….. wherever you are. When I tried to get out to the dolphins on my paddle board the other day, as soon as I got out into the water, they all disappeared. It was weird. The second I was coming back into shore, they appeared right behind me, where I had been moments earlier. It’s like you are telling me, you can see me, but you can’t get too close. You will see me again, but it’s not time yet. You still want me to know you are here, you will always be here until we are ready to go off in our own little world together. I cried on that bench today too with Liz. She then went home and looked up some dolphin symbolism. So beautiful.

Dolphins seen in Christian art are symbolic of resurrection. Some artists utilize the protective, stabilizing, compassionate demeanor of the dolphin as a message of wellbeing to the pure of heart. Some artistic renditions speak of dolphins transporting the spirits of the faithful to Christ’s side upon leaving their physical bodies. Also in Greece, the dolphin is a compatriot of both the god Apollo (sun) and the goddess Aphrodite (moon).This is a key understanding because the dolphin meaning is connected with themes of duality. It has to do with the dolphin being both fish and mammal. It is both of the water, and an air breather. Ergo, dolphin symbolism talks to us about “being in two worlds at once.” Poseidon (Greek), Neptune (Roman)
Themes of kingship, rulership, authority, strength, dominion, freedom, intelligence, compassion and fatherly protection over the entire kingdom (sea).
Eros (Greek), Cupid (Roman)
These gods contribute dolphin meaning of: Love, friendliness, playfulness, sensuality, desire, exploration, curiosity, attraction and joy.
Dionysus (Greek), Bacchus (Roman)
These deities underscore the dolphins ability to uplift, and carries themes of joviality, freedom, wildness, abandon, creative self-expression. The term delphi is noteworthy as the Greek word for dolphin is delphis and its derivative, delphys means womb. This incorporates more lunar and feminine attributes to the dolphin scene. In Celtic animal symbolism, the dolphin as a highly honored creature as it was seen as the protector of sacred wells and sacred water. The dolphin, to the Celtic mind, is the watcher of the waters, and the guardians of all things water-associated. Pirate lore also hails the dolphin as a symbol of protection.

From my love, LIZ::::::: I know you’ve want to see Ronan in your dreams, but I swear… these fucking dolphins, Maya. My mom said when you guys were talking by the pool yesterday, they were there the entire time. I have no doubt in my mind they are the sign you’ve been looking for. I hope you can sleep better tonight knowing that Ro is always ALWAYS by your side. Love you so much.

I do believe this. It’s happened too many times for me not to. I can’t think of one time that I have not been out by the beach and not had them be there too. At the exact same time I am. I know they don’t just hang out there all day and night. It’s a sign indeed. A beautiful sign from my baby boy. Thanks, Ro. You know I needed that, especially after my hard couple of days.

I took Quinn to Pinkberry tonight. He is my little sidekick. Stuck like glue. He is sleeping between your daddy and I with you GiGi on his head. Just like the way you used to sleep with us after you got sick. I miss watching you sleep. I miss you squeaky voice so much. I’ve got to figure out how to get through this without you, Ro. I’ve got to “flip the switch,” as my friend says. I wish it were that simple, that easy. I need a better attitude?? I need to not miss you so much?? I need to find things to occupy my time?? Are those the answers? I don’t know. I hate the unknown. It’s days like today that I am happy that I got out of bed before 9 and I did my best to play with mommy role that feels so unnatural without you. But I did it. Sucked it up and did it.

I got a random text from my little 17-year-old airplane pal. I have not heard from him in forever. He said he was having a bad day, he is lonely, and he is tired of the drama with girls. This made me smile. Not to take away anything from what he is going though at 17, but what wouldn’t I give for those problems. He told me at 17 he just wants someone to share his life with. I told him the only people he needed to be sharing his life with at 17 are his friends and figuring out what truly makes him happy. I told him it could be a lonely journey, but it will be worth it. How if you take care of yourself first, everything will just fall into place. I told him how I understood, how at 17 I felt very restless and wasn’t really sure what I wanted out of my life so I took the time to leave my town and just focus on me. I never looked back. I told him how I have learned the very hard way how precious life really is, how I will forever be destroyed because I don’t get to watch you grow up. I told him that he, Bryson, has everything, right in front of him. My advice to him was not to let the petty things get him down, to take this time and live his life for him and nobody else, travel, get out of Utah, read books, run, play sports, study, fall in love 10 different times, make mistakes, learn from them, and then make them all over again. I think he liked what I had to say as he told me that I had just made his life sound 10 times more exciting. Glad I could help:) You are a good kid, B, so you will be just fine.

OK baby boy. Ambien nights are here. I love you to the moon and back. You are my heart, my soul, my everything, forever. Nothing can take that away. Sweet dreams, I hope you are safe.

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.

Love is enough

Ronan. Hi baby. I miss you so much. Today was an o.k. day. I slept in with your brothers and we cuddled in bed for a long time this morning, just watching cartoons. It was a lazy morning, a quiet morning, a cuddly morning. I wish I could say that these mornings bring me peace, but they do not. They just make me miss you more. They just make me want you here so badly, where things were never quiet because you were always up to something.  I was always having to look after you because if I turned my back for a second, you would have done something crazy and silly. Now, without you, I don’t have to look over my shoulder at all times. I can go to the beach with Liam and Quinn and sit quietly without having to worry about them. They are big enough and independent enough that I can just let them be. I hate this so much. I don’t want to be the mom with nobody to look after at the beach. I don’t want to be the mom that doesn’t have to worry about you eating sand, throwing sand, running out too far in the ocean. I remember those days that I had to worry about all of those thing with you and I loved them so much. I miss them so much. I fucking hate this life without you.

Laura, Kasey, Cameron, and baby Chase all came over and we spent the day down at the beach. I sat quietly for a while and it was so peaceful that I couldn’t handle it. I soon got up and played football with your brothers. I drew a start and finish line in the sand and I raced them both a bunch of times. I watched them wrestle and throw sand at each other. I watched them be boys. Boys who are having to learn how to be brothers again without you. It is such a different dynamic now. I feel like a foreigner living in a different country trying to figure out this new life. How to fit in, how to adapt, and how to survive.

After our beach and pool time, we headed up to the condo to get showered and ready for dinner. I talked the Lunds into staying with us for a day or two. We love having them here and your daddy was so excited that they said yes as he was going to miss out on seeing them due to being in Phoenix. We could really use some Thompson/Lund family time now. We ended up grabbing pizza in town and bringing it back to our place to eat. Laura and Kasey offered to watch the boys so I could head out for a run which I gladly took them up on. I have a new little route I’ve found and I’m loving it. It’s a perfect 6 miles total. It felt good and I of course talked to you a lot. I cried a lot on my run too. I wish I could think of something other than the last few hours of your life, but as of now, it is those memories that consume me on my runs. I go over and over them in my head. I go over and over what we could have done differently. This always upsets me and it is always while running that these are the things I think about. I remember every second of your death, every detail, every moment. It is as if they are frozen in time and oddly, as sad as these memories make me… I treasure them too. I talked to you tonight after my run as I was cooling off. I yelled your name, I yelled up to the moon that I loved you. I then started to cry and begged for you to let me be with you. To take me with you as I don’t want to be here without you. I want to be with you, wherever you are, together forever. I don’t want this life without you. But unfortunately, this is not my choice to make. If you wanted me with you badly enough, you would find a way to take me with you. I will wait for you, for however long it takes for us to be reunited. I know it would make you too sad to have me not be here for your daddy and brothers, but honestly Ronan, some days all I want is to be gone with you.

Your daddy arrived tonight so I went to pick him up and Uncle Kasey went with me. We stopped by your Daddy’s favorite brewing company here to refill his “Growlers.” I don’t really know what they are, except they are two huge jugs and they fill them up with different beers. I knew your Daddy would be needing a beer tonight after his had few days at work. I was happy to see him and so was Kasey. The “Bromance,” between those two continues. We came back to our place where sleepy kids awaited us, but your daddy and Kasey wanted to hang out. Being the lovely wives that Laura and I are, we happily sent them on their way to some bar on the island. It’s some guy time that your daddy really needs right now and Kasey is the best medicine for him. I hope they stay out as late as possible, drink their selves silly, and your daddy is able to let go and enjoy himself for a few hours. He deserves it.

Last night, before I went to sleep he sent me the sweetest test message. He said, “I love you. You are strong, stubborn, witty, articulate, and sexy. Night night.” That daddy of yours made this mommy smile so big. I know you know how hard things have been for us. How in the world do two grieving parents get though this, stay married, while trying to raise a family? It’s got to be the most stressful thing on a marriage in the world. I don’t know what the secret to all of this is, but we are doing it. Even on the days where I want to run away and never come back because there is too much pain and sadness everywhere I look. Even on the days that I just want to disappear, and run away to Vietnam with Tricia….. I won’t. I can’t. I guess it’s simple. It’s because your daddy loves me and I love him. Love will be enough to get us through this. Love is enough.

I have to go to sleep now baby. It’s late. I’m tired and the Ambien is kicking in. Goodnight my sweet baby boy. I love you to the moon and back. Please be safe, please be happy, please don’t cry. I promise I will meet up with you again. I cannot wait for that day to come, but I will wait for you to take my hand and come and get me. I love you so much, my little seal.

xoxo

The little monkey made it through the night

We ended up staying out of the hospital last night. Ronan slept and slept hard. His fever was off and on through the night, but did not ever go above 100.1. So thankful.  I had the most awful dreams last night. UGH. I can’t shake them this morning. I had a dream that Ronan could no longer have his Stem Cell Transplant because he had too much Neuroblastoma everywhere. All of our doctors were in my dream and there was a lot of screaming, crying, and hitting done by me. Can’t I catch a freaking break?? Why can’t my sleep be at least be peaceful; my days are filled with so much crap you’d think I’d at least be able to take a break while I sleep. Not the case, ever. I need a break today. I may have to just bite the bullet and leave Ronan for a bit to go and hike Camelback or something. I need to clear my head for just awhile.

The boys’ are excited to watch the Packers football game today (Go Packers!) and they also have a birthday party to go to as well. Woody and Quinn are still asleep and I am cuddled on the couch with Ro and Liam watching Mickey Mouse. Ronan does not want to do anything; except have me be by his side. The little guy gets upset if I even leave his side to get up and try to do some things around the house. Macy and I have been laughing about this on the phone and calling him my warden. He certainly is the one who rules the household around here. I don’t mind, I secretly like being his slave. Especially when he looks at me and tells me I’m the best mommy in the world. It’s moments like that, that make me realize I can get him through this because he is so worth all of this.

On Friday night I got a call from my OBGYN,(the BEST one in the world, Dr. Kathleen Schwartz) We have been trying to connect forever but I keep missing her when I am in for my visits. She is the one who delivered my twins and Ronan. It was so nice to hear her voice and to talk to her for awhile. The first thing I said to her was, “Can you believe this is happening to us?” She was very sweet and very concerned and it was nice to catch her up to speed on things.

All of my little monkeys are up now so I’ve got to get breakfast made. Have a great morning… I basically just wanted to update you on Ro’s fever. Hoping we continue to keep him home. Thank you Stacy Frakes for saving my life with your Hava Java delivery this morning! You are the BEST!!!!!

If I could open my arms
And span the length of the isle of Manhattan
I’d bring it to where you are
Making a lake of the East River and Hudson

And if I could open my mouth
Wide enough for a marching band to march out
They would make your name sing
And bend through alleys and bounce off all the buildings

I wish we could open our eyes
To see in all directions at the same time
Oh, what a beautiful view
If you were never aware of what was around you

And it is true what you say
That I live like a hermit in my own head
But when the sun shines again
I’ll pull the curtains and blinds to let the light in

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Sorrow drips into your heart through a pinhole
Just like a faucet that leaks and there is comfort in the sound
But while you debate half empty or half full
It slowly rises, your love is going to drown

Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to drown
Your love is going to . . . .

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. <3 <3 I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.