Las Vegas, Chicago, and Palm Springs

Ronan. I’m still here despite my silence. It’s only been a few days since I’ve written, but it feels like a lifetime. A lot has happened, even though it really has not. Let me try to retrace my steps these past few days. Your Daddy ended up going to Vegas. It was a quick trip and I am glad he ended up going. He needed to. He deserved to. He needed to blow off some steam and spend some time with the boys doing boy things. Liam and Quinn left for Chicago with Mimi and Papa. They are still there. They went to the ASU game last night. It sounds like they have been having a great time.

While your Daddy and brothers were gone, I stayed home alone for the first time. I had people checking in on me, friends who were worried and said they didn’t like it….. that I should call my girlfriends to come and stay over. I didn’t listen. I wanted to see if I could do it. If I could handle being in our house, all by myself. It wasn’t enjoyable, but I made it though. The visions of blowing my brains out didn’t even crawl into my head like they usually do. I had a quiet night at home, crawled into bed, did a few things on the computer, and tossed and turned all night. I walked around the house a lot. Looked outside, expecting to find you. I didn’t. I made it though the Silent Night without you. FUCK. That song. I used to sing it to you ALL the time. I never sang it to Liam and Quinn. Always to you. It is what I would sing, hum, whisper to you when I was rocking you to sleep. I never knew what a silent night it would really end up being. That song creeps me out now. I hate it. Why that song? Is it because I knew that one day, I would be without you, alone in our house, and I would have to survive the fucking silent night? I had to survive the night without you. I had to do it alone. I hated every second of it.

Your Daddy came home from Vegas and as soon as he walked in the door, we hopped in the car and headed to Palm Springs. It was a last minute trip and we knew we should take advantage of your brothers being gone, so we decided to drive out to Palm Springs to see Laura and Kasey. It was either that or stay in Phoenix and get caught up in our everyday stuff. We both knew we needed to get out of town, to see some dear friends, to spend some time together, just the two of us. I have forgotten what it is like to be with your Daddy, just the two of us. To be honest, I was nervous about spending this time with him. You know how closed off I am to everyone and everything. Guess what I found on this trip though?? I found one of my best friends again. Your Daddy. I remembered. I remembered why I fell in love with him 13 years ago. I remembered why I married him. I remembered why I love the feeling of holding his hand. I remembered how I love to see him smile. I remembered how I used to love to smile for him. I remember how much I love how he towers over me and makes me feel so tiny, even though I am tall. I remembered all of that and it felt nice. It all felt really nice, but it made me miss you even more. This guilt/grief thing really messes with ones mind. Anytime I felt a tinge of happiness, I would feel a rush of guilt wash over me. As if I was betraying you. I tried to talk myself out of these feelings, but it was impossible. I’m just going to continue to do what I’ve been doing, which is to nurture the feelings I am having and not try to change them. I have to embrace them and right now, and guilt is a big part of what I feel. I feel guilty for many things, but most of all for being here and living this life without you. It seems so unfair. You were supposed to be here, living this life with us. You were supposed to live to be a hundred, not only almost 4. Just shows you how little control we have of this thing called life. Absolutely none. I said this to your Daddy tonight. I don’t know how our conversation started, but it ended up with me yelling something like, “So what! We did everything right in our lives. EVERYTHING! And look what happened to us!” Just goes to show you, there are no guarantees in life, no matter how hard you work, how much you love, how you think you make all the right choices….. It can all be taken away in an instant and then what? You are left blind-sighted, trapped in this life, wishing for death everyday. But good thing you worked so hard to make the perfect plan.

Palm Springs was a good break. It was pretty low key. We spent some time with Laura and Kasey. I got to see your little friend, Cameron. She misses you. It was harder than I thought it was going to be, being around her. I spent a lot of Friday night, at Laura and Kasey’s house, just crying. I sat with Cameron and painted her little 3 year old fingernails and toe nails. As I was in the middle of this, she looked up at me and goes, “Maya, why did Ronan die in the hospital?” Oh, baby. I didn’t even know how to answer her. I couldn’t think of anything remotely acceptable to respond as an answer to her. So I didn’t. I just choked back my tears instead. Laura soon put Cameron to bed. I went to snuggle with her and we talked and I rubbed her back. I sang her our “Twinkle, Twinkle, LIttle Star,” as I played with her little fingers that reminded me so much of yours. You both have the same big hands and long fingers. I cried as I snuggled with her. Sweet, sweet, girl. She talks about you a lot and thinks about you a lot. She misses you and told Laura she wishes you were back with us. That’s a big thing to come out of a 3 year olds mouth. She loves you. I remember how much you loved her too. I’ll never forget your Tu Tu party with her, your first summer at the beach together, how you discovered your love of pickles together. Laura and I would talk about how you would grow into adults and get married. It was the perfect plan until it wasn’t. Until is was no more. No more planning your days, months, years, or life.

How quickly everything changes. What an awful change.

It was good to spend some time with our friends. I tried my best to keep it together and to smile and laugh along with my tears. The endless tears that just flow whenever, wherever. I have no control. I don’t need to. You are worth every one of them. The endless tears that I know I will cry for the rest of my life, Ro. I miss you.

My melatonin is starting to kick in. I’m tired, baby. I hate that I have to go to sleep now, without kissing you goodnight. Do all of you mommies out there, who have your babies, know how lucky you are?? For the first time in my life, I know the feeling of being jealous. A feeling I have never experienced in my life, but now I do, after losing Ro. It is a very sad thing to feel. It stings and it’s ugly. But I feel it, and I’m not going to deny it. I hope one day I won’t, but as of now I do. I refuse to let it make me an ugly person. Jealousy can turn the most beautiful people, into the most ugly. I will deal with it, let it fuel my fire for this fucked up disease of Childhood Cancer, that everybody just wants to ignore. Here’s what I have to say to anyone who reads what I write, but chooses to look the other way. Childhood Cancer can happen to ANYONE. Infants, toddlers, children, teen-agers, adolescents…. ANYONE. If you read about Ronan, if you are now aware of his story and you choose to do nothing…. I feel sorry for you. Truly sorry. I pray that the day never comes, that somebody you know, whether it be your child, niece, nephew, grandchild, best friends child, etc…… GOD FORBID, ends up getting cancer. You will feel like such an Asshole, knowing that you knew about Ro, but continued to live your blissfully happy life. If you are reading this blog, it is for a REASON. Do something with that reason. Help be a change. Be aware. Be proactive. Stop sitting on your ass and living in a bubble. If there ever comes a day, that your bubble bursts and you had your wake up call but didn’t take it…… Well that just sucks. I don’t care if the only way you change your life, is by just being more thankful….. At least that is something and it has come from the beauty of my son. I refuse to let him die in vain. I WILL NOT LET HIM DIE IN VAIN. This is my promise to him and the world. A change is coming. A change for the better, because life without one is absolutely pathetic and disgusting.

That’s my political attempt for the night, with my eyes half closed and heart ALWAYS heavy. Miss you, my baby doll. So much more to say, but words are failing me. I love you to the moon and back. I hope you are safe. Night baby.

Because Kids get Cancer, too.

 

Ronan. September 1st. Childhood Cancer Awareness Month. How many people out there, are aware? Not enough. Or if they are aware, they are choosing to ignore it. Assholes. If everyone was AWARE and not IGNORING it, you may still be here. I truly believe that. Was I that unaware Asshole? Totally. Do I wish I still were? If it meant having you here? Absolutely. I would give anything to have you back. You know this. I would sell my soul do the Devil in a heartbeat. It would be so much better than being trapped here, without you. But someone else had other ideas. I don’t like it, but I have to start to accept it; a bit more and more, everyday.

Otherwise, I am going to turn into that bitter mama who is mad at the world. Who has EVERY right to be mad at the world and to turn her back on everything. I don’t want to end up this way, but sometimes it seems like it would be so much easier than to continue on this fight. I know I don’t have a choice, Ro. I know I have to make a difference even when people tell me that I DON’T have a responsibility to anyone but myself, your brothers and your daddy. I know this is not true. I know I still have a responsibility to you. I have to make a difference because this is what you would have wanted. I know you want me to find a bigger purpose in this world than just worrying about if my ass looks big in my LuLu Lemon gym shorts and what to cook for fucking dinner. I know you want me to leave your mark, everywhere. I have no choice but to honor you in the biggest way I can. That means that I will fight this fight until people start to listen. Until huge companies, start to honor Childhood Cancer, the way they do Breast Cancer. Until people stop turning their cheeks because it can’t happen to them. Fuck you. It can. I hope it NEVER does. But I hope if it does, you never have to walk in my shoes because I am going blaze the trails so that Childhood Cancer does start to get the attention and funding that it deserves. So that one day, there WILL be a CURE. So beautiful families, don’t have to watch helplessly as their child dies even after they have done all they can do. The best they could have done. The best will never be enough, because you still died, Ro. I will always feel the guilt of this inside of me. I will never understand why my love was not enough to save you. It should have been. But it wasn’t because Childhood Cancer is that ugly. That real. That scary, that it can change everything in the blink of an eye. But don’t worry. If you choose to ignore it, it cannot happen to you. Bullshit. I am like a flashing, neon sign now people. If you cannot stand to hear this story, because it is too sad, than stop reading, because you are NOT worthy of knowing this beautiful love story. You are not worthy of watching the beauty that is going to come out of losing the most beautiful boy in the world. If you are strong enough to be here, I thank you from the bottom of my heart. I love each and every one of you. I need your help, more than ever. You are all going to help in this fight for Ronan and thousands of other children, who deserve a voice. I feel so blessed that Ronan has touched your lives, even if many of you did not know him. If you are not going to be the loudest cheerleader for me, Ro, or thousands of other precious kids who are going through this…. just knowing that you feel like I have made you love your babies, your family, friends, appreciate the little things more…. still means so much to me. Just knowing that it is because of my Ro, that you feel this way… makes me feel like I am capable of making this world a better place.

I know I have a big job ahead of me, but I feel as if my head is becoming a little clearer, more and more everyday. I feel like the fog is being lifted. I’ve stopped all of my medications. All of them. Even the sleepy meds. Cold Turkey, YO! Just because everyone told me I couldn’t do it, and I shouldn’t do it. Well, I did. I am finally starting to feel free again. I am taking Melatonin to help me sleep. I should have listened to my Mr. Sparkly Eyes at the beginning of all of this as he was always suggesting it. Of course, I had to learn the hard way. Thank GOD for Stacy and for bringing that bottle over to my house the other night. Don’t get me wrong…. my sleep is still not wonderful. I still toss and turn. I still wake up, screaming and crying for you. I am still having very vivid, and mostly awful dreams. But it’s not any worse than it was while I was on my prescription sleeping pills. And at least this Melatonin, is a natural substance. I am a fighter and I will fight though this. I refuse to become one of those moms who ends up going through something awful and becoming addicted to prescription meds. No judgement at all. I just know that is not for me. It is not the way I want to live this life. I want to feel, as painful as it may be. I don’t want to be numb.

I’m in the best place I can be, as of now. It’s not good and I know this. I know I am being hard on myself which is why I’ve named this phase of grief, the Phase of Torture. I am doing a lot of things that are not good for me. Not eating, pushing myself on my Inferno Hikes, throwing up a lot if I do eat, second guessing everything we did for you, mentally beating myself up…… But I am here, I am getting up out of bed, I am being a good mom to your brothers, I am being honest, I am going to a lot of therapy, I am feeling. I AM FEELING. I have not felt for a very long time. I was numb and in shock. I still have those feelings some days, but they are less and less.

Ro. I fell asleep about an hour or so ago, but now I am up again due to my dreams. I hate them. They never involve you, and they are always so scary, sad, and mean. Kind of like my everyday life without you now. Where are you and who is taking care of you? Who is brushing your teeth, rubbing your little back, and singing Twinkle Twinkle Little Star to you? It’s not me. I hate this.

I’ve written to you for days now. Not being able to finish. I have too much to say, too little to say, too many scary things going through my mind, that I don’t want to say. I’m feeling tired, sad, and angry. I’m trying to do my best, to stay positive. Walking through this life without you by my side is utter torture. You spent 4 years attached to my hip. Trying to go on with you gone now, hurts so much. And some days, I just don’t want to do it anymore. I just want to be with you again. I’ll never understand, why it had to be you…. why did you have to be the one to be taken away. Who would be so cruel to do such a thing? I don’t want this life lesson. I don’t want to be grateful for all the little things because I don’t have you anymore. I just want you back. I think I may have to throw up now. We are all here, tucked away in our quiet house for the night. You are not with us anymore and everything about our lives is so different, in the most awful way. I wish I really had an arm missing, or half of my face…. anything but you.

This weekend has been a blur. Lots of family time. We had Kenny, Stacy and the kids over last night. Always good to be with them as they are like family and they just get it. They know how much we need them and they have been such amazing friends to us. I was in a foul mood, talking trash to your Daddy….. being a tough ass. I had a good talk with Stacy, who tried to reason with me a bit. There was no reasoning last night and I usually listen to her. I told her how I didn’t understand how I was just expected to go on and just go about normal things now. Like how could I possibly go on a trip with your Daddy in a few weeks? A trip. Are you fucking kidding me? This is a trip we’ve taken together for years now… and I am supposed to go in a few weeks. Is everyone on crack? This is NOT a normal year. Normal things do not exist yet. Will they ever again? No. But I need some time. I cannot just be thrown back into this life, and be expected to do things that I have done before, in the past, when you were among the living. You just left this earth. I am still here, and trying to figure out how to navigate my way through the fucking grocery store. How am I supposed to hop on a flight to Vegas in a few weeks??? It seems like a sick joke to me. I tried to go to the race tracks in Del Mar over the summer and almost had to be hauled off to the loony bin because I could not handle all the obnoxious people, smoking everywhere, in their stupid hats and clothes. And going to Vegas, during a normal year has never really been my cup of tea. I can stand that place for about 24 hours, on a good day. Can you imagine how I would freak out, going there this year…. it gives me anxiety just thinking about it. If I go, I’m going to wear a shirt that says something like, “My son just died, but let’s gamble anyway.” WTF people?!?! I just want to be left alone. I just want my time to grieve for you. I don’t want to go to Vegas, I don’t want Thanksgiving, I don’t want the weekends anymore, I don’t want to pretend like this is getting easier….. because it is not. Why is everyone acting like just because it’s been almost 4 months, that I need to be moving on, and starting to feel better. I WILL NEVER FEEL BETTER. That I can guarantee you. Do you know what a good day for me is like now? Let me just tell you. A good day now, is a day when my throat does not feel like it is going to close up and I am going to just suffocate to death. A good day is when I can actually swallow, without it hurting. A good day is when I can actually eat a meal, and keep it down. A good day is when I can put on a happy face, and check off some of the things on my shit list. I’ve come up with a new saying that I have adapted. Fake it till you make it. Yup. I’m faking it everyday that I am up out of bed and being productive because I don’t want to be at all. I don’t want any of this life without you.

Did you know Ro, that my mind is so distraught from losing you, that I cannot remember any happy memories of you? My mind cannot even go there. The PTSD is real and it is part of what I am going through now. I’ve talked to all of my therapists about it. They all agree.

 

PTSD can cause many symptoms. These symptoms can be grouped into three categories:

1. Re-experiencing symptoms:

  • Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
  • Bad dreams
  • Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.

2. Avoidance symptoms:

  • Staying away from places, events, or objects that are reminders of the experience
  • Feeling emotionally numb
  • Feeling strong guilt, depression, or worry
  • Losing interest in activities that were enjoyable in the past

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.

3. Hyperarousal symptoms:

  • Being easily startled
  • Feeling tense or “on edge”
  • Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.

It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

I relive what I went through with you, over and over through the day. I don’t have any other memories of you as of now, besides you being sick, you dying, and the love we had for each other. I am trying to work past this but as of now, I’m stuck. Maybe that’s why I cannot dream about you. I’m stuck in such an awful place in my mind, trapped in between awful memories, and my reality, which is Hell on Earth.

I went Inferno Hiking at 1:00 today. Nobody else was on the mountain. It was nice but I hardly remember any of it. I have decided that the reason I love it so much is because it is so painful. So hot that my socks burn the bottom of my heels. It is dangerous and it is the only time during my days that I have to let go of the memory of you not being here. When I am on my run, down the mountain, I have to stay so sharp, so focused on what I am doing…. because one wrong step and it is goodbye Maya, hello broken arm and face plant into the sharp, burning rocks. Bring it on.

I know you know about my intuition that I have had my entire life, Ro. But here is just another example. As I was driving home from The Inferno today, I started thinking about the neighbors that we brought flowers to, on your Random Day of Kindness. I was getting close to their house and I was beating myself up, because when we met them, they told us about their baby girl that they had lost. Their sweet baby girl, whom never even made it out of the hospital. I knew that she passed away sometime in August and I started getting really mad at myself because I could not remember the date, and I had really wanted to put a card in their mailbox, just to let them know I was thinking about them. It’s September now, so I knew that the time had passed and I was so disappointed at myself for forgetting. As soon as I got home, I parked the car and went to get the mail. I pulled it out, I saw a letter addressed to me, from our neighbors. That is weird, I thought to myself, as I had just spent the past 4 minutes, thinking obsessively about them and their baby girl. I ripped open the letter and it was from the wife. She had taken the time to write me a beautiful letter, more about who they are, who their kids are, and how the daughter that they lost, would have been 22 this year. I started to sob. It was such an honest, beautiful, and kind letter. She wrote to me about how she had read my blog before meeting me, and that I had seemed so strong from my words. But then when she saw me, face to face, that I seemed so fragile. She gets it. She knows why I look that way. It’s because she is a mother, who has lost her little girl. It’s almost like a secret handshake that we have. She can easily see the pain in my eyes, when others cannot. Getting that letter today, reminded me that for as fragile as I am…. I still cannot give up on this life. That I cannot give up on myself. I am on to something with the way I have some of these things in life figured out. I need to listen to my instincts a little more and trust in myself that the path that I am on, is going to lead me to where I was meant to go. As much as I want to fight this stupid life now… I have too much to go on for. You are still my number one reason for living. You are keeping me alive, Ronan. You will take me when you are ready and I just need to trust and believe in that. It is the only thing I trust and believe in anymore.

I’m going to go baby. This has turned into a novel. I hope it even makes sense. I love you so much. To the moon and back, forever and ever. Sweet dreams little one. I hope you are safe.

xoxo

This made me laugh. I will take a laugh wherever I can get it:)

 

Crazy Cat Lady

Ronan. I’ve been quiet today. Which you know, are my most painful days. I didn’t sleep well last night. Woke up at 2:30, a.m….. watching the clock. Paced around the house. 3:30 a.m. was here before I knew it…. close to the time you passed away. I managed to go back to sleep, woke up around 5 a.m. ready to start the day, but did not get out the door for boot camp. Did some things around the house instead. I got ready for the day ahead of me, which was a total freaking blur. I don’t even know what went on. I’m like a crazy Cat Lady now. The crazy Cat Lady who lives alone, with 50 Kitty Cats in her house. Meow.

Except for the cats that surround me all day long, come in the form of notebooks, journals, books, pieces of paper, post it notes…. I take these things with me everywhere. I write, all day long. Lists, things to do, things to not forget, random words, names of songs, feelings, thoughts….. I write at stop lights, in the middle of the grocery store, while I’m waiting to pick the boys up from school…. I don’t even know what half of the shit is that I am writing. Maybe someday it will all come together, but for now, it is one big flood. I’m drowning in my words and the flood cannot be stopped. I hope it is healing, but only time will tell. Until that time comes, I am content to be the Crazy Cat Lady.

I remember thinking today, that I needed to get my passport picture retaken; as my passport has expired. I decided it was a great idea to go to Kinko’s to get it done. So random. Your Daddy called as I was in route. I told him what I was doing. I told him I was going to get my passport picture taken. He asked where I was going that I would need my passport. I wanted tell him, that I was going crazy. Instead, thoughts of Africa, Thailand, and Vietnam flashed across my mind; but I didn’t tell him that. I have been blabbing about going to Vietnam with Trish for about 6 months now. Mostly just to get a reaction out of your Daddy. I don’t have any concrete plans to go anywhere, as of now. That could all change, tomorrow. Why can’t I go to one of these places? I have decided that I hate the word, “Can’t.” I wrote this tonight to one of our lovies, who was saying that word. I called Bullshit on that word. Because it is. I think I said something along the lines of, “Life is too short. Stop saying you can’t. You can do anything you want, because you are alive. Ronan CANNOT, because he is DEAD. You are not.” It is true.

Sometimes I don’t know where my bluntness comes from, but then I remember you. You were so bold, blunt, and true to yourself. I am finding little parts of you, just live inside of me. I really do feel like your spirit went back into my body some days. I felt like that today, which is another reason my body/mind just seems to shut down and just let’s you take over. I just let you guide me as I kind of float through the days. I never know where you will take me, or what we will embark upon together. But I am ALWAYS up for the journey. It’s just you and me, baby. Just like we used to say, back in the day. Back in the day; that feels like so long ago. I feel like you have been gone, for 4 years, not almost 4 short months. What the hell is that all about? Is it because of how much I miss you? How much I long for you every second of the day? It has to be. I feel like I’ve been trapped in this world without you forever, when the truth is, you left this earth such a short time ago.

I am suddenly so tired now. The girls(Stacy,Trish, Fernanda) came over tonight because Daddy is working late. Stacy brought a bottle of Melatonin. I told her I’d try anything to get off of this Ristoral. I asked her really, how many I could take. 10?? 20?? The bottle says 1. We decided I could take 2. I doubt anyone has ever died a Melatonin overdose. I’ll have to Google that one. I think I’m o.k. with taking 2, except for it’s made me totally sleepy.  Yummy. I miss sleepiness.

I’m giving in tonight. I don’t think I can write about the rest of my day. Except to tell you that I missed you with every inch of my body. From my lips to my toes. Oh. And tonight, when I hugged Fernanda goodbye, I kissed the inside of her neck. For one second, I felt like I was kissing you, as that was always my favorite place to kiss you. I always kissed you there and told you I was getting some of your sugar. I got all teary eyed as wasn’t planning on kissing the nape of her neck…. but I did, and it reminded me so much of you. I love you baby boy. I love you to the moon and back, forever and ever. I hope you are safe. G’night my love. Sweet dreams.

xoxo