G’nite Halloween. Thank you for being over.

Ronan. This is my second Halloween without you. I survived. I woke up today, feeling alright. I went to my office and got a lot of things done. Most everybody came dressed up in a costume. They had me chuckling most of the morning with their creativity and fun. It felt really good to be able to laugh this morning and I thought I was going to be o.k. After getting so much stuff done that I thought my head was going to explode, I snuck out of the office to go run some errands. I was on a mission to find white face paint for Quinn and was having a hard time tracking it down. After about 3 stops later, mission white face paint was a success. I ran to see your Mr. Sparkly Eyes and bring him a coffee. As soon as I pulled into the parking lot, my eyes started to water and the tears started falling. I kept hearing Taylor’s song play over and over in my head again. “And its about to be Halloween
You could be anything you wanted if you were still here.” I started thinking about our last Halloween together and then my mind started worrying about you, like I always do so much. Where are you? Who is taking care of you? What are you doing? Do you know how much I miss you? I know you miss me just as much. Why did you have to be taken away? I looked at myself in the mirror and wiped my eyes, took a deep breath, grabbed your Sparkly’s coffee and apple and headed inside.

I sat down and waited. Don’t cry. Don’t cry. No crying today. Soon, your Sparkly appeared and sat down next to me. “Hi. Are you o.k.?” he asked. I just got up and wrapped my arms around him while I avoided his eyes. I sat back down and the flood of tears came next. “Hey, it’s o.k. it’s just another day. I know, it was his favorite day. I know it’s hard today, but you will get though it like you get through everything else.” I didn’t really say much. I couldn’t because I couldn’t even breathe. I just sat and wiped away my tears for a few minutes. “I have to feed Poppy. She is a vegetarian.” I broke out the apple I brought for him and my little veggie snack pack for your Poppy. I sat and we ate while catching up on some things. I guess at one point he had me laughing which I didn’t even notice, but our Sparkly told me it was nice to see me smile. I still don’t smile as much as I used to. I miss it sometimes. The rest of our conversation floated back and forth between you and Poppy. He also told me he thinks I should have about 3 more kids after this one. I told him he was crazy and that being pregnant was not good for my mental state of mind. He said he didn’t think anything was good for my mental state of mind because how could it ever be after going through something like this. Exactly. Nothing will fix this, Poppy included. But we all know that she will bring a little piece of you back and the little bit of happiness that is missing from our lives. We all need her. Your Sparkly included. I left your Sparkly and he told me to just do my best today, to get through tonight, and go to bed. I told him I would indeed do my best, for Liam and Quinn’s sake. That is just what I did.

I picked your brothers up from school. I was exhausted and all I wanted to do was shut my door, take a bunch of sleeping pills and never wake up again. I let my mind go there for about 5 seconds and knew that was of course, not an option. Instead, I got your brothers all ready for the night. I sat Quinn down and painted his face for his KISS costume. Apparently, I have missed my one of my other many callings in life which is a make-up artist. His face turned out awesome and he was so excited. We headed out to our dear friends, The Willets for some trick or treating. The place where we last took you. It was hard. Everything about today and tonight was hard as I imagine it always will be. This might be the hardest holiday to try to celebrate, without you. Your daddy and I somehow survived. We are both so thankful for good friends. We are both so glad to be home and in bed. Your brothers had a great time and that is all I could ask of for tonight. It is all I wanted besides you back with us all. I’m so sorry, Ro. I hate that we are apart more than anything in the world. Every 4-year-old was out tonight. They were everywhere, but you were nowhere to be found. I will never understand any of this.

This is all I can write tonight as I can hardly keep my eyes open. I did have an ultrasound yesterday. Poppy is still a Poppy. I am so thankful for that. I really think having another little boy, would have been so hard for me. I know I would have loved him so much, but the reminders of everything you… another little boy who wasn’t you, mentally would have been tough to deal with. A little girl is something so different. Something I have never experienced. I am really, really thankful you made her a girl. Thanks, Ro baby. I love you so much. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Wake up, throw up, go back to bed.

 

 

 

 

Ronan. I am not used to living a life where I am physically chained to my bed. That’s how it’s been this past week. I cannot seem to function. This extreme fatigue and nausea, are mentally beating me down. I’m used to being the energizer bunny. Go, go, go. Get this done. On to the next. No sleep needed. No eating required. Crazy workouts. Although my routine seemed crazy to most, I felt like I thrived in it. Now, since this vampire baby seems to be sucking the life out of me, I can hardly get my head up off of my pillow in the mornings to take your brothers to school. Then I usually come back home, do a few things, but fall back into a coma like sleep for a few hours. I wake up exhausted. Throw up. Get a few more things done. Lay down again. It’s fucking depressing, to say the least. Your daddy keeps telling me that I’m wiped out due to growing a home for your baby brother or sister. I am trying to relish in all the beauty of this but it is secretly making me hostile. I don’t do well with things that slow me down. I miss my workouts. I miss being on the go 24/7. But most of all, I miss you. I got up to do a few things yesterday. I went to see Dr. JoRo. We talked about a lot of stuff. How I am trying to manage everything like my stress level and this pregnancy. I told her the awful dream I had about you and how my memory of you was completely gone. I could hardly get that story out without choking on my tears. I left her office, feeling tired and sad.

I came home and fell into a deep sleep. I’m telling you, it’s all I can seem to do lately. I sent your Mr. Sparkly Eyes a text. “Is this normal? I don’t think this is normal. Do you think I’m dying? I think I’m dying.” He promised me that I was indeed not dying and to stop overdoing everything. He called me a control freak and told me to settle down and to start listening to my body instead of fighting everything. He made me promise that I would rest and put my feet up. I told him I would, but only because he told me to do so. I listened to him like I always do. He always knows best. I spent the rest of the day, resting and trying not to be resentful for it. But truthfully, this slow paced living is pissing me off. Especially when I have to be at home, in this fucking quiet house, without you. I’ve spent about the past year, avoiding our house during the day, because I hate it so much without you here. Now I feel like I am in prison. Trapped inside my own personal hell with your little bedroom down the hall, untouched like you are still here. I wander in it during the day, looking at the last drawing you did on your easel with a permanent marker on the chalkboard when I told you to use chalk so you wouldn’t ruin it. You have no idea how glad I am you didn’t listen to me on that one. It’s one of my only drawings I have of yours. My days feel so sad and lonely without you here, and with me, being stuck at home because I am literally too tired to function. I don’t remember it being this way with you and your brothers, but your daddy says he does. I am blaming it on my old age;) 34 feels a lot different from being pregnant at 25 and 29. 34 and being pregnant can suck it. I know this is what you would want. But it still feels a little like a betrayal to you. Your daddy keeps reminding me how much you wanted a brother or sister. And I keep reminding your daddy that yes, that is right, but it is also because you thought you were going to be here to help take care of him or her and be the best big brother ever. I don’t think you ever knew you were going to die, Ronan. I truly think you thought you were just going to go to sleep and wake up once again, after we got you all better. It destroys me everyday that we now have to physically be apart and I can’t take care of you, look after you, or keep you safe. There is no better place, then here with me. NOWHERE. I will never be o.k. with you being somewhere else. You were supposed to be with me, for the rest of MY life. Not the other way around. I am so sorry that you had to be taken away. That you had to be robbed of our beautiful time together. You should have been the one, watching me die from old age. I should to have been the one watching you die at only almost 4 years old. My heart will forever be broken in a way that is just not repairable. I will fight on, not because I am strong but because I won’t fail you or let you down. No mother is strong enough to survive something like this. A mother doesn’t survive something like this. I didn’t survive this. I died when you died. I just made a choice to get back up and live the only way I know how to live now… by fighting for you and all you were robbed of. I continue on because I know that you want me to make this better for others. It’s not my choice, it’s yours. I choose to live to honor you and everything you stood for which was strength, courage, and fearlessness. I live on, for you because I love you so much. Everything I do is for you.

I came home yesterday to the sweetest thing on our porch. It was a balloon with a card and a little baggie attached to it. I opened the card and it was from some girls that live in our neighborhood. They had spent the last 4 days, selling cake pops and had made about $73 dollars. They said they wanted to help find a cure for cancer and know I would put it to good use. I felt a wave of goodness wash over me. What amazing little girls. I know this lesson they are learning in life and about your story will shape them in a way that they will go on to do amazing things. I feel that way about everyone who hears about you. If that wasn’t enough to make me cry, the next thing was. I opened a letter from someone saying how they had heard your story, wanted to help, but they only had 1 dollar. They taped the dollar to the letter and said they were giving it to me. Then the next letter, from a mom, who’s husband is working 3 jobs, they have nothing, but she cleaned out her change drawer. My cheeks were soaked with tears after being hit with those 3 things. Thank you, sweet strangers. I hope you know I am thankful for you taking the time to learn about Ronan and for every single penny that comes our way. I am going to build something amazing with it. Something unlike anything that has ever been done before. Something these families and kids so deserve when going through something like this. This will be your legacy, Ronan. This will be how you live on and help others. This is my purpose.

Your daddy went out last night. I fell asleep early while your brothers played some zombie fighting video game in the living room. They kept coming in to check on me. I was out cold. It was around 10, that I heard them both crawl into bed with me. “Goodnight, mommy. Goodnight, Liam, Goodnight, Ronan.” Quinn said. Liam chimed in, too. “Goodnight boys, Goodnight, Ro.” I managed to say. I woke up around midnight, your daddy still gone. I looked for me 3 boys in my bed, but I only saw two. I punched a pillow and went back to sleep. I am awake now. It’s early in the day… around 5 a.m. I am up due to feeling sick to my stomach from this Poppy that grows in my belly. I hope today I can manage to be a little productive. Liam and Quinn have a basketball game. You would be so proud of the way they are killing it on the court. Quinn had 18 points last weekend. I know this would be your sport too, if you were still here.

I miss you. I love you. I hope you are safe. I love you to the moon and back, baby doll.

xoxo

 

What doesn’t kill you, will make you a better person. Hopefully.

Ronan. I spent the majority of the day, sobbing after I held it together at your brothers meet the teacher. I wore my best mama hat. “So nice to meet you, Quinn’s darling teacher.” “Liam is so excited, this is going to be an amazing year, Liam’s darling teacher, too.” In my mind you know I was freaking out. I have no idea how I did not burst out in a puddle of tears while slipping and falling on them in front of everyone. Oh wait, I know. It’s because I had to remind myself to be strong and not to break in front of your brothers and mortify them, completely. I chatted with them the entire way home about school and everything they were so excited about. We got home and I was fine, until your daddy called. “How was today.” he asked. “Fine.” I choked out. That’s all I could say as I was crying too hard, to finish the conversation. He was home, a few hours later. Home to me making him a grilled fucking cheese because that’s all I could manage to cook for dinner tonight. Awesome wife of the year award totally goes to me. He acted like I had made the best meal on the planet. I started doing the dishes. Your daddy looked at me, my tears falling into the sink. “You don’t have to do those now.” “Yes, I do.” I sobbed. “You know I can’t ever leave a dirty dish in the sink.” We then sat at the table. “You need to eat. Have you eaten today?” I hadn’t. “I’m not hungry. I’m not eating. I need to go hiking.” You daddy just looks at me. “I’m sorry. I don’t know how this happened. It’s so wrong. He should be going to kindergarten tomorrow. I love you.” “I love you, too.” I squeak back.

I head out the door for a night hike. I think a lot on my hike. I don’t turn my music on. I get lost in the night, without a headlamp. Opps. I cry for a long time, at the top of the mountain. I tell you how sorry I am, over and over again. Thoughts fill my head like I think I let you down. I don’t want to let you down anymore. I need to work on some things because I am human and make mistakes. Some days, I get so angry that I impulsively act out. That’s not me. That’s not who I am. But some days, the anger wins. What can I do, to change this? You were not about anger, but about all things pure and love. I am not about anger, so what can I do with this fire that fills me and makes me want to lash out at people who don’t deserve it? Because things that go on in the normal world, that people think are problems, but are actually not, make me crazy. But that’s not for me to decide, what other people’s problems are. I am not the gate keeper of the normal problems of the world that I so wish I had. It all goes back to, who am I to judge? Just because you died of cancer, I get to decide what problems are real in people’s lives and what problems are not? That’s not o.k. That’s not a role I want to play. Please tune it out, Maya. Please make something good come out of it, instead.

I thought about tomorrow a lot. How are you going to make it through tomorrow. A scene played out in my head. What if I go to an AA meeting. Would they kick me out? Can I sit in a group and get lost in the problems of other people for a while? And when it came to my turn to talk I would just say, “I’m not an alcoholic. I don’t even really drink. My son was supposed to start kindergarten today, but he died of cancer and I didn’t know where else to go or what to do.” Then I got to thinking I should start up my own group of AA except I would call it Anger Anonymous. Where we could have a support group for people from all walks of life who are dealing with their pain, whatever it may be, and who don’t want to let it destroy them. Our motto could be “What doesn’t kill you, will make you a better person.” We could make our focus about recognizing your anger, talking about it, but then taking it and doing something really good with it. I try to do good, everyday. But sometimes, the little super pissed cancer killed the love of my life and I’m so mad takes over. I’m sorry for this. This is not what you were ever about. I will try to do better. For you.

I have to go now. Your daddy asked to spend some time with me. Maybe I’ll have cried so much today, that tomorrow will be o.k. I will survive, no matter how hard it is. I always do. G’nite Ro baby. I love you. I miss you. I’m sorry. I hope you are safe. Please take good care of LoRo during her surgery. I know you heard me tonight, asking you to. Sweet dreams.

xoxo

P.S. You all are the BEST for your suggestions. I loved the one where somebody replied with “Drink. I know it’s not very smart, but it’s all I’ve got right now.” I almost peed over that one. Thank you all, so much. You have the most beautiful hearts. xxoo

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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Scrambled Eggies and a Fucking AIMS Test

 

 

Ronan. The weekend is over. I guess it was busy. It’s late now but I actually just got home. This weekend went a little something like this… A baseball game. Dropped your brothers off for a sleep over at a friends. Your daddy looks at me as to say now what? Because another date night of me staring across a table at him, sobbing so hard that I cannot eat and I will blow my fucking brains out. Luckily, we had made some kind of sort of let’s do something with Danielle and Dave, plans. We went to dinner. We caught up. We went bowling. I may have sucked really bad the first game. I may have gotten the high score the second game and redeemed myself. I may have smiled. I still felt sad, but it’s good to be with friends like Danielle and Dave. They are easy. They both love you. Sunday, your daddy went into the office. I picked up your brothers. We all then went to this place called Mike’s Big Breakfast for lunch. Oh, how you would have loved it. This was all I could think of the entire time we were there. I think Liam ate 10 pieces of bacon. And pancakes. We sat at the bar. Everyone smiled at us. It felt weird to me. I wanted to scream out, “Hey! No smiling allowed! We are not the happy family that we may look like! Don’t you know our Ronan is missing? Don’t you know our Ronan is gone? I just want him back! Why isn’t anyone bringing him back?!! But this food is really fucking good.” And I don’t even really like food anymore, so that’s saying a lot. Unless it comes in the form of Airhead Extremes Candy. Or Coke. I will love those two things, forever. Your brothers went over to a friends’ house later Sunday for another play date. It’s good for them and helps out over here so much. I can use the break and so can your daddy from the constant parenting that we are always doing. Parenting that is so exhausting when you are constantly dealing with this pain and grief. Your daddy asked what I wanted to do. It was so sunshiny and nice out. Shiny mother fucking people everywhere. Put me in a dark room please and let’s watch “The Girl with the Dragon Tattoo.” That’s what we did. I had already seen it. Your daddy had not and I knew it was right up his alley. It was while watching this movie, that I found out about our little friend, Jaiel. The 16-year-old girl that I had told Rita about around a month or two ago, who was fighting Neuroblastoma. The girl that was the reason that we decided to go to the anti bullying press conference that Nicole Stanton had because Jai had posted something about how it was nice to know that people who you thought were your friends, really were not because they were all just waiting for you to die. Her post ripped my heart out. She is 16 and she is dealing with real life in the most horrific way. She does not have normal you are so fucking lucky to only have a boyfriend breaking up with you problem, to cry about. This girl was fighting for her life. Something that  so many people, take for granted.

Somebody posted something on Facebook saying she had passed away yesterday. Impossible, I thought to myself. I had just been messaging back and forth with her a week or so ago. She had just had another surgery, so she could continue to fight. I thought she was doing o.k. I should have known better. Because I know first hand, how evil and unpredictable this disease can be. I sat in my bed, in shock. Your brothers came home soon after that. I had to keep it together for the sake of them. Your daddy asked if I wanted to play outside with them. “No,” I quietly said. I would not. I played catch out in the parking lot today of Matt’s Big Breakfast. That’s enough for today. That’s all I can do, for today. Unless Ronan is there too. Then I would like to play. You were not. So I left. I went for a very dangerous, night hike instead. But before my little hike, this is what I did. I parked. I sat in the car and sobbed. I sobbed for Jai. I remember thinking to myself poor Jai. And her parents. I cannot imagine what they are feeling. I cannot imagine what it feels like, to be them. Then I had visions of your little face, your little voice, your little lips and how lucky I was to be able to have all of those things. But then I remembered that you are dead. I had forgotten. My head started spinning and I thought I am never going to see him, again. At least not in this life. How is that even possible? How can this even be real? I bolted out of my car. Luckily, I had decided to wear my FUCK YOU YOU FUCKING FUCK tee-shirt while hiking up the mountain today. I do not think my fellow hikers appreciated it very much. The amount of dirty looks I got was actually quite humorous. Quite a few people gave me dirty looks. I gave them dirty looks back while the black tears poured down my cheeks. I’m pretty sure I looked mad. Like in a Mom’s Gone Mad sort of way. I’m pretty sure I didn’t really fucking care today. I am glad nobody said anything out loud to me because I might have punched them. Maybe not punched, because I don’t do physical violence, but I totally would have assaulted them with my middle finger instead.

I came home and your daddy just looked at me. I had snuck out of the house without him seeing what tee-shirt I was wearing. Score 1 for secret operation ninja Maya plan. Score 0 for OH MY GOD NO YOU DID NOT WEAR THAT Woody. I did. And I’m not sorry. Cancer can be sorry, for killing my child. And this is how I feel about cancer, so I’m wearing it. Plus Jai died. And all of these babes are dying, so yeah, fuckyouyoufuckingfuck, was appropriate. I don’t care who says otherwise.

This is what Quinn said to me about 10 times today. “Mom. We have an AIMS test tomorrow. Can you cook us a really good breakfast??”

“Ummm…. of course I can, Quinny.I will cook it and you will do awesome on your test.”

He asked me this, about 5 more times tonight.

I thought to myself, don’t I always cook a good breakfast before school? Then I remembered that no. No I do not. I used to. I used to ALWAYS cook a good breakfast for all of you. Your eggies. Your scrambled eggies. Bacon. Sasauge. The works. I would feed you all, scoop you up in your P.J.’s and throw you in the car. We would drop your brothers off at school and come back home to play for the rest of the day. Now eggies only really happen, on the weekends. During the week, it’s every man for himself here is some cereal and shove some yogurt down your throat if we have time. Eggies pretty much kill me, without having you to feed them too. Tomorrow, I will cook eggies on about the 4 hours of sleep I am going to get tonight. Tomorrow, I will get up extra early to cook the eggies without you. I already hate tomorrow.

This is the other conversation that has gone on for months now. May. May consists of telling your daddy, I think we need to go away.  I do not think it would be a good idea for us to be here, in May. Your daddy wants to know, where I want to go. China. Thailand. Vietnam. Australia. I think it may be a little late for those places. I don’t think I can plan a trip like that. I cannot make a decision to save my life. Why can’t I plan a freaking trip? What is wrong with me? This is easy! Turns out, it’s not so easy. I think I am having major mental block out May issues. If you block out May, it won’t come. It’s coming. I cannot be in Arizona for it. East Coast. I think it’s going to be an East Coast trip. I told your daddy this tonight. Maine? Boston? All of it? “Whatever you want,” was his reply. Just please plan it. Fuck. A plan? How can I plan this let’s get the fuck out of here, because Ronan’s 1 year of everything is coming up??? Because if I do not, I know what will happen. And it is not good.

I tucked your sweet brothers in tonight and sent Rita a text. “Hey. Do you have HBO? I do not. And “Girls,” is premiring on HBO.” It’s our fairy RoMo’s good friends show. I don’t watch T.V. but I did tonight due to Rita’s response  that she did indeed have HBO and she lives close by. We sat and watched, laughed, and LOVED it. I stayed over there late. We talked about May. She has been trying to help me make a decision for weeks now. I’ve been ignoring her. I thought she was going to fly off the couch with happiness when I said, “I’m thinking East Coast…” She seemed to think that was great idea. Maybe tomorrow will be the day that I can make your daddy proud, by figuring this shit out. Maybe tomorrow is already here and it looks bleak. We shall see.

Eggies to cook in the morning, Ro. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

I miss him

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!