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.

Just you and me

Ronan. Just another day without you. I wish I could tell you that I am o.k. But, I’m not. I’m just sad. I’m swimming in a sea of sadness and am barely staying afloat. This morning, I took your brothers to surf camp. I sat and watched them for the 3 hours and pushed them as they both complained about the ocean being too cold, etc….. I was the mean mommy that told them to suck it up. My tolerance for their complaining today was at an all time low. At one point, Quinn came in and didn’t want to go back into the ocean. He wanted to stop surfing for the day. I brought up you and how hard you fought for every second of your life. I talked to him about life and how important it is to not give up and to keep fighting. I told him how you would give anything to be living still and if you were having a hard time at something, that you would have never have given up. But life is not fair and now you don’t get to run around, never taking no for an answer, all while pushing every limit, every boundary that came your way. You were just born different from most people, Ronan. Your daddy and I say it all the time. You had a fire and such strength in your soul. That’s  why we were so convinced that you would beat your stupid fucking cancer. I’ve never met a boy stronger than you and I still can’t believe that everything ended so quickly.

After my “get your ass back into the water,” pep talk….. but in a much nicer way, Quinn finished up his class. I don’t know if I’m pushing too hard, but that’s just the way it goes. Your brothers need to learn a little something about fighting to become the best people they can be. To appreciate everything that they are able to do. To never take a second of life for granted. I have no tolerance for whining and complaining anymore. I know what it’s like to watch a little boy go through treatments for cancer and how you never once complained about anything. Except for missing your brothers and just wanting to be home. Complaining about things in our life now just won’t exist anymore, unless it has to do with missing you. That’s the only thing any of us should every complain about. Anything else can be fixed, problem solved, or worked through.

After the boys’ surf lesson, we hit up the hot tub and than came up for lunch. Liam crashed out for a nap, Quinn rested as well and I took my surfboard and headed out for a couple of hours. It was cold, but I welcomed the angry ocean with open arms today. It felt good to be out there and I got tossed around a bit. Coronado is a great place to learn how to surf and the quiet time out in the ocean, when I paddled past the waves to think about you, was nice. After I surfed, I came back up to the condo and hung out with your daddy and brothers. Later in the evening, we went out to our usual spot so your daddy could cook up our dinner. There were a bunch of dolphins out in the water this evening. We spotted about 5 or 6. They were so beautiful and I of  course thought of you. I was than overcome with anger and thought to myself that it was bullshit that a sign from you, had to come in the form of a dolphin. I don’t want any signs…. I just want you. Back with us, the way things should be. I tried to be happy about seeing those dolphins tonight, but it only made me sad and miss you more. You did leave me a lot of signs today, which I am thankful for. I don’t mean to sound ungrateful, Ro. I love all your little signs, but it doesn’t make me miss you any less. Sometimes it hurts more.

After dinner, we came back up to the condo and although it was late…. 9:30, I headed out for my run. (sorry Mr. Sparky Eyes) I promised him I wouldn’t run late at night anymore, due to an encounter I had with some creepy man a few nights ago; but I had to go tonight. It’s the restlessness in me that never goes away. I ran 7 miles…. all the way over to the Coronado Bridge and back. It felt good, it hurt, and I of course thought about you a lot. Sometimes, when I am thinking about you, it hurts so bad that I cannot even cry. I was thinking about being at The Ryan House with you and I felt like I was going to stop breathing as I still can’t come to the realization that you are gone. I think I have Post-traumatic stress disorder. For real.

Post-traumatic stress disorder

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.

Causes, incidence, and risk factors

Post-traumatic stress disorder (PTSD) may occur soon after a major trauma, or it can be delayed for more than 6 months after the event. When it occurs soon after the trauma, it usually gets better after 3 months. However, some people have a longer-term form of PTSD, which can last for many years.

PTSD can occur at any age and can follow a natural disaster such as a flood or fire, or events such as war, a prison stay, assault, domestic abuse, or rape. The terrorist attacks of September 11, 2001, in the United States may have caused PTSD in some people who were involved, in people who saw the disaster, and in people who lost relatives and friends. These kinds of events can produce stress in anyone, but not everyone develops PTSD.

The cause of PTSD is unknown, but psychological, genetic, physical, and social factors are involved. PTSD changes the body’s response to stress. It affects the stress hormones and chemicals that carry information between the nerves (neurotransmitters). Having been exposed to trauma in the past may increase the risk of PTSD.

Having good social support helps to protect against PTSD. In studies of Vietnam veterans, those with strong support systems were less likely to get PTSD than those without social support.

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical ofanxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • PalenessYup. That pretty much sums me up. Except for the paleness, but that is only due to the sunny Cali weather:)

I thought about the lecture I was going to get from Mr. Sparkly Eyes about running so late at night and thought about how I would tell him that I was sorry; but fear is a word that doesn’t exist in my vocabulary anymore. I have already lived through the thing I was most scared of in my life. So now what? What else do I have to fear? Nothing. Of course, I worry about your brothers and Daddy, but when it comes to me… I just don’t give a fuck. I’m not going to live my life being scared of anything anymore because I know whatever else is thrown my way, will be nothing compared to losing you. So , I will run my runs when I want, say the things I feel, swim in the ocean at night, and not be scared. It’s actually very freeing and liberating. To live a life of not being scared of things is how all people should live, otherwise what’s the point? Before all of this, I don’t know if I would have ever taken up surfing, because I was scared of sharks. And forget about running the dark. I used to make up things in my head to be scared of. Well, I’m done with that. At 33 years old, after losing you, I’m done with fear. I’m going to live my life the way you would have lived yours. Head on, embracing every adventure and pushing the limits for the most beautiful outcomes. I will live my life this way for you, because I know as an adult, this is the way you would have grown up to be. Life would have been scared of you.

I came home to your daddy and brothers watching a movie and soon Quinn was ready for bed. We came into our room and as soon as we turned on the T.V. guess what was on, Ro. “Zombieland.” One of our very favorite movies that we used to watch all the time. That’s where you got the saying, “Just you and me,” from. Another one of your little signs. That was one of our favorite things to do in the hospital was watch that movie on your iPad. Quinn watched it for the first time tonight and laughed a lot. It’s a little mature for him, but he has had so much of his innocence taken away that I let him watch it anyway. We cuddled up and watched it together. I held him extra tight for you.

We say goodnight to you every night. Do you hear us?? I hope you do. I’m going to say goodnight now baby. We have an early camp tomorrow again, hoping those brothers will pick up a little more passion and zest for the opportunities that they are given. I just want them to be thankful for being on this earth everyday, with 2 parents who are so broken, but are somehow managing to make this summer as good as it can possibly be. It’s a lot of work, but as a family, we have to do this. For all of us. I know it is what you would want.

I love you little man. I love you to the moon and back. As I was running tonight, I stopped and blew a kiss up to the moon and said, “I love you, Ronan.” I hope you heard me. Life is so precious and I know it doesn’t’ seem like it now, but I am not going to let it swallow me whole. I promise I will start living it again when I am ready. But ready is not now, and I don’t know when it will ever be. I need more time to pass between your death. I still cry all the time, but mostly over being with you that final night and saying goodbye to you. I still tell myself it just can’t be true. You were true and all I wanted was you. Forever. What am I supposed to do without you my little bug?? As of now, I don’t want to do anything except survive and not totally fuck up your brothers with the crazy shit that goes though my head. All I can do is be present for them and do the little things for them that I know mean so much. I will deal with them first, and myself later. I can wait. The damage done to them cannot be undone, which is why when we get back to AZ, therapy will become a big part of our lives. I have to be proactive about this and it is something we are going to have to do as a family, together.

I also forgot to tell you a funny story from last night. I took Quinn to dinner, on a date. We had finished up and we were walking out of the restaurant and there was a family of 5 sitting on the bench and standing up, smoking. I was holding on to Quinn’s had and I looked at them, straight in the eyes, and said, “Smoking causes cancer,” and kept walking. I thought Quinn was going to fall over. It’s like I have no censor anymore and he wanted to know if we were going to get into trouble for saying that. I said for what, “For speaking the truth? Ronan got cancer because he didn’t have a choice.” The fact that people in this day and age, take it upon themselves to smoke, knowing what the risks are, pisses me off. I’m sensitive to this, especially now. I wanted to say, “You should get cancer, not my 4-year-old child who didn’t do a thing wrong in this world.” You make the choice to suck on those freaking cancer sticks, then suffer the consequences. My child had to suffer for not a god damn reason at all except for bad luck. If anyone deserved to live, it was you baby. I will never stop thinking that. This whole things turned out so unbelievably wrong. For everyone involved. Everyone misses you Ronan. Even though you are gone, you are still changing lives. I promise you, a cure for this will be found before I die. I know I made you a lot of promises, but I promise to keep this one. I owe it to you and all the other little babies out there. Give me some time. Some time to mourn you, but when I feel ready….watch out cancer world. You’ve fucked with the wrong mommy and baby team. You are going to be sorry, but it will never be sorry enough for having to lose you over Ro. I will be sorry about that everyday for the rest of my life. Your fire now burns in my soul, you live with me, in my body. I know you may go away now and again, but when you want to come home, I know this is where your soul rests. I feel you all the time.

This is all for tonight my little monkey man. I love you to the moon and back a million times over. Just you and me, baby:) Sweet dreams. Go and visit some of your favorite people. Nighty Night baby boy.

xoxo

“Take away a man’s son. You’ve truly given him nothing left to lose.” Quote from Zombieland

You speak in every curling wave

 

 

 

Ronan. Today started off as good as it possibly could, without you here. We woke up and Liam, Quinn, and Layne spent the morning playing together. I put on my good mommy boots and made them all a huge breakfast. Waffles, fruit, eggs, bacon, sausage…… you name it, it was on the table. I thought of you the entire time as I was making the scrambled eggs, just as you would have liked them. You used to insist that I made the best scrambled eggs ever and would only eat them if I made them for you. I loved that so much. Soon, Layne went home to get ready for the day. Your daddy took Quinn and went off to Costco and to run some errands. I stayed here with Liam and we just kind of had a lazy day. I cleaned and did a lot of laundry. I had a few things trigger a lot of tears today and I did a lot of throwing up. Your dad came home to me, a wreck, just sitting on the bed, bawling. Quinn took one look at my face and sat down with me at told me he loved me and started rubbing my back. I forced the tears to stop and got up to help them unpack the things from Costco. Your daddy and Quinn came home with my very own surfboard for me. It almost cheered me up, but I mostly just couldn’t wait to get out into the water so I could get my ass kicked. I was on a mission. Mission accomplished.

I got your brothers all ready for the beach and we headed out to meet your cousins. They had their stuff in the sand, but they were all in the pool. We set our stuff next to theirs, Liam and Quinn headed out to the pool and I grabbed my board and paddled out into the ocean. The ocean seemed as angry today as I was. The waves were ridiculously big. I didn’t care. I paddled out as far as I could, which ended up being really far. Wave after wave threw me from my board and under the water. I continued out there, to try to get past them. I got up a few times, I asked for your help. At one point as I was paddling out, I looked up and a huge wave was getting ready to come crashing down on me. I think I said, “Oh shit,” out loud and ended up flying off my board and the fin ended up hitting the back of my arm really hard. I almost thought it was sliced open, that’s how badly it hurt. Turns out, it was not…. it turned into a big welt and bruise instead. No big deal, yo. As much as it’s hurting tonight, I am choosing to ignore it because all I can do is think about you and all the pain you felt, especially towards the end of your fight. This stupid welt on my arm has nothing on you, Ro. I surfed for a couple of hours and the current ended up pushing me really far away from my starting point. Tiffany was watching from the shore and when I finally got back over to her, she said she was a little concerned that I was going to end up in Mexico. I told her I didn’t realize how far away I had gone and that I was ALMOST a little scared for my life at one point. But not really because fear doesn’t really seem to exist anymore.

After my little surfing fiasco, I went to join your brothers and cousins at the pool. They are such little fish and didn’t stop swimming in the pool and the ocean until 9 tonight. We were down at the beach for 7 hours today. We met up with your Mimi and Papa, and Uncle Larry and Aunt Joan. Tiffany and her kids too, and we grilled up a big dinner by the pool while all the kids continued to swim. It was such a sweet summer night. Of course, the only thing missing was you. Quinn ended up cutting his little thumb on something in the hot tub so we had to doctor him up. I took him into the bathroom as he was very upset about his thumb. I changed him into his warm clothes, looked at his thumb that thanks to Tiffany and her first aid kit, we had it bandaged up pretty good. He was really upset about it and I just quietly explained to him that I was sorry he was hurt but he is going to get hurt in life; it’s just part of being a kid. I talked all about you and how after all the things that you went through, that were so painful, that you hardly ever cried. I don’t know if it is a good or a bad thing to make comparisons to you and how tough you were to Quinn. But tonight, it needed to be done and it felt right so I did it. I think more than anything, he was just tired and needed some mommy love. We packed up our stuff and Liam helped me carry everything to the condo while Quinn went on and on about his thumb. As soon as we got upstairs, I put him in my bed and 15 minutes later, he was out like a light. Worn out from his day at the beach and I know sad from missing you. Liam told me last night as he was crying that he was homesick. I asked what he exactly was homesick for. He told me his bed and you. I held him and told him we were all homesick for you, but now you lived in our hearts so you will always be with us. As much as I could tell you this seemed to bring him comfort, it didn’t. It didn’t help me either. I don’t want you in my heart; I want you back here with us, where your freaking belong.

After a long day, I ended it with talking to Stacy. What a perfect way to end my night then with a phone call from her. She had a lot to tell me about meeting with the busy little bees today in regards to the event that they put on at The Biltmore for you on Friday night. I sat, cried, and listened as she told me about meeting with the girls and how amazing they are and how much love they have in their hearts for you. I am still in awe of how quickly they put on this event and how many people came out to support it. We talked about how after the summer, I would like to sit down and pour all of my energy into making this an event something we do every year for you. For others, because as I’ve said before, we have to raise awareness. I cannot believe the army of people that we already have lined up to help us with this. I don’t even know how this happened. Actually, I do. It is all you, Ronan. You are changing lives everywhere. I cannot wait to personally meet all the people who helped with this event and give them all the biggest hug from you. The passion that you have created is astounding and once again, I am so proud to be your mama and your best friend. I miss you, Ronan. I know you are here though. Thanks for the little sign tonight that comes from my Pandora. Right now, as I’m writing this, your song came on. The song that we played for you every time you were left alone in the room for your radiation. The Killers, “Human.” You are such a special little soul. G’nite best friend. Thank you for visiting your daddy so much in his dreams lately. I know you will come to be when the time is right and I can get off of this damn Ambian. Love you to the moon and back, baby.

xoxo

 

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]