More stuff coming soon!
September Childhood Cancer Awareness
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.
This made me laugh. I will take a laugh wherever I can get it:)
Ro baby. I am going to try to write tonight; but I am tired. I will do my best because I miss you so very much and my mind is anything but still. Today started out o.k. Waking up knowing our reality, is never easy to do. I got up and started working on some things around the house. Organizing things. Very fun. I can tell things like this are going to become an obsession for me. Things that I can control, are very important to me now. Things were so out of control, for so very long, now it is as if I am becoming obsessed with the things I can control. Such as how much I exercise, how much I eat or don’t eat, the perfectly put away laundry….. I cannot wait to start project organization on my closet tomorrow. The once, carefree, chaotic life that we used to live, seems like a fairytale. It is no longer here. Oh, how I long for the chaos that you created. You used to leave my head spinning, but in such a good way. I could never keep up with you and your craziness. So, I just gave in and joined you instead. We were such a perfect match. You were the best little partner in crime. I miss you so much. I don’t like not having a partner in crime anymore. Trying to keep this up, without you, is so boring and dull. And just plain sad.
Ro baby. I didn’t finish that last night. I had to snuggle up with Quinn instead who was sobbing about how badly he misses you. I held him tight for a long time, in the bottom bunk of his bed. I didn’t know what to do; so I just held him and tried to comfort him. I kept telling him how sorry I was, how unfair all of this was, how much I loved him, how strong of a family we are…..but my words were of no comfort to him. I gave in and told him to let it all out, how it was good to cry about you. It ended up being too much, so I in turn, just gave in and cried with him. As soon as he noticed my tears, he sat up and said the words that he’s said to me a thousand times now….”You o.k. Mom?” I wiped my tears away and told him I would be o.k. if he was going to be o.k. He said that he would and we decided to climb up to the top of Liam’s bunk bed to sleep. Liam was snuggled in bed with your Daddy. I fell into another night of restless of sleep, with Quinn by my side.
The weekend is over. It was all pretty much a blur. We had friends over, ran errands, did things around the house, went Inferno Hiking a couple of times….. I had breakfast with my besties this morning. Me and my 3 dolls. Not many laughs, but more tears. It is o.k. though. I know there will come a time when we will laugh like we used to. It’s the friends that stick by your side, during the toughest of times; who you will be with until the end. I’m so lucky to have the girls’ that I do as they are truly the best of the best. I know I say this all of the time, but I wouldn’t be standing here, without them. My sisters for life.
I went to the grocery store tonight. Alone. I hate the grocery store so much. I needed to get things for the week. Once I stepped in the store, the panic took over. My head started spinning and I could not focus on a thing. I filled my cart with fruits, veggies, things to pack for your brothers lunches. I did not have a list, as I thought I could remember what I needed. I used to be so good at that. I knew there was something that I really needed to get at the store. The one thing that I could not forget. I had spent much of the day, reminding myself, over and over, what I needed to get. Once I was at the store, I could not remember what that one thing was; to save my life. I knew it was something to do with toiletries. I walked up and down the aisles, trying to remember what in the fuck it was that I needed. It wasn’t shampoo, soap, face wash, Q-tips…… I was about to burst into tears. Why is my brain not working anymore? This is so not fair. Why are you dead? You are dead and my memory is gone. I used to have a memory like an elephant. Almost photogenic. Just as the tears started to form, I turned down the toothpaste aisle. There it was, Ro! Dental Floss! I’ve never been so happy to see goddamn dental floss in my LIFE!
I made the mistake of going down the toy aisle. There it was. A Star Wars action figure that we never had. A new one. NONONONONONO. I picked it up. I started talking out loud, repeating, “Guy’s Helmet,” over and over just like you used to call them. I took a picture of it. I almost bought it. I had to set that toy down tonight and just walk away. I had to walk away from knowing that I couldn’t buy you that toy tonight and bring it home to you. You would have been so excited and I could almost feel you wrapping your arms around my neck and giving me one of your best kisses. I cannot believe that I cannot have that anymore.
Babydoll. I’ve got to say goodnight. Your daddy is sad and I just don’t know what to do with all of this. Everybody is sad. How can I fix everyone else around me when I am so badly shattered that the simple act of connecting, being attentive, loving, and compassionate to those closest to me, often leaves me locked in a bathroom, lights off, puking my guts out.
Thanks, Fuckwad Cancer for taking my baby away from all of us. I HATE YOU.
G’nite Ro. My babydoll. My “not spicy,” monkey, my blue-eyed boy. I love you to the moon and back.
And P.S. WTF is this thing? It could be the most genius invention, EVER. Way better than the snuggie. Can somebody get me one of these? I would like to put it on and wear it for the rest of my LIFE. Stupid life. But this so made me crack up.