Ronan. Our song for the night. From one of my most favorite badasses out there.

 

 

 

 

http://youtu.be/3jNlIGDRkvQ

Lipgloss Living isn’t easy when your heart is broken

Ronan. I died long before you died. I died on the day you were diagnosed with cancer. I’ll never forgot the way the news was presented to me. Like, “Oh, hello I am an Oncologist. Your son has stage IV Neuroblastoma. Have a wonderful day.” I was stunned, in shock, and the world was literally spinning around me. I was still trying to figure out what the fuck an Oncologist was. I fell to the floor. I died right then and there. But I got back up from my death. I got back up and I fought. We were thrown into the world of childhood cancer and did not stand a chance. Oh, how I thought we did. Because of course you were special and you were mine and we loved each other so much that the God’s from above were going to work in our favor and save you. They did not and you died. And now I will say over and over again, fuck those Gods for taking my child. After you died, I died again, right along with you, by your side, as you took your last sweet filled breaths. “Come with me, Ronan. Let’s get the FUCK out of this place. Take me with you. Please. I don’t want to stay here alone. I am dead, too.” Dead. Dead. Dead. Not once, but twice. So far in my life, I have died not once, but twice.

You die when your child dies. It’s a fact. You die, over and over again. Yet somehow, you just keep being reborn. I often have days where I’ll look in the mirror and say to myself, who are you today? Because I don’t recognize this face. It’s a new face today, but always the same eyes. Those big, sad, green eyes that are filled with so much pain, darkness, and fire it is as if I am looking into the depths of hell itself. Do you know how I go out into the world now Ronan? How I know what kind of day it is going to be? My days are determined by my lipgloss and I’m not even freaking kidding you. What the fuck, kind of way is that to base my days off of? I don’t know, but it is the only thing that seems to work for me. No lipgloss= a really bad day. A clear or light lipgloss= a calm or peaceful day. A bright or red lipgloss= a very, extra spicy day. A red lipstick day! Holy hell. Hold on to your pants, because someone is pissed. I never did this in my life, before I died. I only knew one feeling during that time and it was pure and utter bliss. Lipgloss living wasn’t even on my radar due to the emotions I was feeling. I just wore it because it made me feel pretty and for no other reason then it was girly and fun. Now I wear it to not feel pretty, because I never feel pretty anymore. I feel ugly all the time. I now wear lipgloss like it is part of my survival to stay on this earth. Lipgloss is my imaginary friend that helps me get through the day, the way I need to get through it. Didn’t think I was crazy before? You surely must think I am crazy now. I have imaginary lipgloss friends. It’s o.k. You know I am o.k. with the crazy that exists inside of me. It’s always been there. Now it’s just a little more tangible.

Today had no choice but to be a better day, then yesterday. But last night. That was hell. I think I tossed and turned until almost 5 a.m. I think I beat up some pillows and sent some raving mad lunatic emails to only the one close enough to us, to receive them. Emails that said things like, “What was I thinking, coming here without my Ambien?!! I need it so I can take 5,6, or 7 of them. Or I actually just need my son back, so I can sleep peacefully, again. Can you bring him back for me? I know you can’t, but just thought I would ask. G’nite lovie.” I finally fell asleep after writing a bit. Crying a bit. Thinking a bit. And missing you, a lot. I woke up today, tired but filled with a nervous energy that I couldn’t shake. Adrenaline running through my body like wildfire. Must go, go, today. Do, do, do. I went to visit someone who I have not seen in a long time, but someone who had a hand in shaping me during those very tumultuous teen-aged years. Someone that watched me at my worst and my best. Someone that watched me as a crazy dramatic teenager, grow into a young woman, and now this; a broken-hearted adult. I walked into to see her, like a puppy dog with its tail tucked in between its legs. That’s how I felt anyway. She looked like she was seeing a ghost. We stood and hugged for a few seconds. I didn’t feel like letting go. “Hi,” I said with my eyes falling to the floor. “Oh, Maya. I think about you all the time. But look at you. You’re doing it. You don’t have a choice. I don’t know what to say. You are such a good person. You didn’t deserve this.” Enter my hysteria here, that I tried to keep under control. “I don’t know what happened or how this happened or why this happened. I did everything right. I did everything I thought I was supposed to do in this life, to make sure I had a good life. And this happens to my baby. How??? Why???” No answers were given of course. Just words of sympathy. Maybe pity?? I hope not pity. I never want pity from another person. I stayed for a few minutes longer as it was a short visit, as it only needed to be. She told me she felt honored that I came by to see her. I wanted to say, “Honored? Not honored. It’s just me. I’m just the same. I would always come by to see you, when I was visiting from out of town. I do not want you to see me, so differently, that you are honored that I would pop by. Please, don’t think of me like that. As the broken-hearted woman you see in front of you. Please think of me as just being the same person I was before all of this happened.The girl you used to know, who didn’t know what real pain, felt like. Can’t I go back to being that girl? Please? I cannot. That life is over. That life, will never exist again. Only a new life exists now and I’m not sure what that looks like. It looks different to me, everyday.

Tomorrow is almost here. I have a favor to ask of all of you lovely little blog readers. You all know my Dr. JoRo and how I fully embrace the fact that she has been one of the people who has saved my life through out all of this. Before her, I had no hope at all. She is one of the only people in my life, who has given me the gift of hope back. Tomorrow, her baby girl, Cheyanne, would have been 18 if she had not died during birth. It is because of her death, that I have my Dr. Jo and I so hate that. I would give anything for it to not be this way, and to not have ever known Dr. Jo, so she could just have her daughter. But because of the cruel fates of the world, it is not this way. Dr. Jo has taken tomorrow and turned it into to International Kindness Day. She has been doing this for a very long time now. So long now, that over 1 million acts of kindness have been done around the world. Can you please take tomorrow, and do something extra nice for someone? Even if it is just smiling at a stranger or holding a door open for someone. It doesn’t have to be anything big, but even the smallest acts of kindness, can change the world. Thank you, lovies. You are the best blogosphere friends a girl could ask for. I love you all.

G’nite Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.

xoxo

 

Ro baby. My song for the night. Because my friend, Robyn told me so.

 

 

 

http://youtu.be/HGH-4jQZRcc

If I had any Ambien, it would be an Ambien overdose night.

Ronan. Today was a mind fuck of a day. I should have known it was coming. Your brothers wanted to go fishing on Papa’s boat. They went just a few nights ago and begged me to go with them. I told them I couldn’t. Even your Nana kept saying over and over again, why don’t you just go. I quietly just said that I wanted them to go and spent this time with your Papa, to have their own little adventure. That was partly true, but it was partly not. Why didn’t I go? Because the last time we were on that boat, was with you. I remember that day, so clearly. You were not sick. You were perfect, healthy, and so happy. But you were sick. You had Stage IV fucking cancer filled through out your entire body. How could that be and how did we not know? 2 and a half weeks after you being on Papa’s boat, we were told you had cancer. I can’t get on that boat again, I’m not ready. I didn’t have a choice today. Your brothers were begging to go. I did my usual pep talk. “Come on, Maya. You can do this. You are their mom. Suck it up and go fishing with them.” I felt physically ill. Deep breath. Step on the boat. A fishing you will go. Holy fuck. We were out there for about 5 hours. I felt like I was frozen in time. No. This is so wrong, without Ronan here. And your brothers were off their fucking rockers today with their fighting. I did my best to keep things calm, but it just went on and on and on. At one point, I pretty much just gave up. I was so exhausted and mentally just beat down from trying to hold it together for them for the day. I was ready to jump off of the fucking boat and swim to shore. The arguing. The water fight. The hitting. It was all I could do not throw them both off of the boat. I didn’t lose my temper. I disciplined them the best I could, being out on the boat stuck in the middle of nowhere. I was so happy when our day of fishing was over and we were driving back home. That boat felt horrific without you.

We came home. It’s been 2 days since I’ve eaten. I was hungry. I was tired. I came upstairs and crawled into bed as I suddenly was too sad to have an appetite. I just sat and sobbed instead for a while. Quinn came upstairs of course to see what I was doing. He saw that I was crying. He asked what was wrong. I just told him I missed you. He asked if I needed anything. I told him no. He got up and went outside. I got up and went downstairs to try to put something in my stomach. I was sitting in the living room, just about eat and your brothers came in yelling and screaming that one of them, had just broken the other one’s bike by getting into a bike war. WTF? I had enough. That was the straw that broke the camels back. The situation was explained to me and the disciplining came next. Word to the wise. I don’t do well with A)the destruction of other people’s things B)Having something nice, but not respecting it C)the taking for granted of things that you have. Doom Day had arrived and it arrived in the form of disciplining those brothers of yours like they have never been disciplined before. It was about a 2 hour ordeal. It started with the both of them crying, the explaining of what they did, the why, the reasoning behind it, the apologizing to your Nana and Papa, to each other, and to me. It ended with the 3 of us in a circle. I took in a deep breath. “Do you understand, why you got into so much trouble tonight? I want to hear your explanation of it.” They both gave a very detailed explanation. “I cannot have this. Do you understand how hard it was for me to get on that boat today? How all I wanted to do was have a nice day with you and all I did was break up your arguing and fighting the entire day. I am so sad. I am so sad all the time. I didn’t want to be sad today. I was trying so hard just to have a good day with you. But then all the fighting. It makes me so sad. You are brothers. I cannot have you treating each other this way.” They said they knew. That they were sorry. That they knew what they had done (destroying the others bike) was wrong. “You boys are going to make mistakes in your life. Lots of them. I understand that. I am o.k. with that as long as you learn from your mistakes. You are learning a lesson now. And the ONLY reason, I am not putting you both back on a plane to Arizona right now, is because you told the truth about what happened. You owned up to it, you apologized, and you promised to learn from it. If you would have lied about any of this, we would be leaving tomorrow.”

I should have stopped there, but I didn’t. I broke. I started sobbing. “Why don’t you ever talk about him? I know you miss him. I know you love him. You never talk about Ronan and it kills me. I miss him so much. I know you do too. He is a part of our family. He will always be a part of our family. I am so scared, that you are going to forget him. Please, please start talking to me about him. I know you are so confused and have so many questions. I am your mom. I love you so much. You can talk to me about anything. I don’t want you to be scared, to talk about Ronan. We need to talk about Ronan. Please!” Now all 3 of us were crying. “I’m sorry. I love you both so much. I miss him so much. I am so sorry this happened to us.” I grabbed them both and held on to them tightly for a bit. Liam got up. I grabbed him. “You. I am so worried about you. I watch you, Liam and the way you hold everything in. You are kind of like me in that way. You can’t hold it in. I know you have all of these feelings in there. I am your mom. I am here for you, for whatever you need to talk about. I love you so much. Please know that you can come to me, with anything.” He wiped away his tears and said o.k., gave me a hug and went downstairs. Quinn stayed upstairs and he soon fell asleep with me whispering in his ear, clinging on to your GiGi. He is all wrapped up in it now.

If I had any Ambien it would be an Ambien overdose night for sure. Kidding. Kind of. That’s my way of being dramatic. But about 6 months ago, I’ll bet you it would have been. I don’t do well with hard days like this as all they make me want to do, is check out forever. But forever doesn’t help kick cancer’s ass or raise your brothers so I know I need to be done with that little plan of destruction. I am. But I hate days like today. They are too hard, without you.

This is all for tonight, little one. I miss you too much to write anymore. I miss you. I love you. I hope you are safe. I am so very sorry. Sweet dreams, baby boy.

xoxo

The most beautiful girl that there ever was

Ronan. I get a lot of letters from people. They are for the most part, filled with the kindest, most inspiring words that one could ever read. I occasionally get some hate mail, telling me how my evil plot to help other kids with cancer, is destroying the world due to my swearing, too many opinions that I should keep to myself, and of course all of my anger. Because as you know, I have been told over and over again… that you are exactly where you should be and in a much better place so I need to find some peace in that. You know what I say to that and what I will always say to that. Complete and utter bullshit and nobody should ever say those words to bereaved parent. EVER. I don’t care what it is they believe in. Those words are so ignorant and cold. They are so hurtful on so many levels. No parent should ever be without their child in this world. And if they have to be, those words should never be said because they just are not true. The only place a child belongs in this world, is with their parents and nowhere else. End of story on that.

I got a letter in the mail a couple of months ago. During that May month that was so hard to get through. I recognized the address and closed my eyes before I ripped it open. I sat with this letter and let my world absorb around me a bit before reading what it said. I slowly read the eloquent words before me and let them sink in, in a way that only one bereaved mother can do to another. I read the letter, over and over, and cried. I think I sat on the floor for a while. Your daddy came home. He saw me holding the card and asked who it was from. I just looked at him and said, “Simi’s mom.” His eyes fell to the floor. “What did she say?” I held on to the card and just mumbled something like, “Everything. Just everything.” I didn’t give him the card to read. I tucked it away in a book that I carry with me everywhere. I only keep really special things in this book that I carry around with me. It has a couple of pictures of you in it and now, this card too. I have read this card, over and over, especially on the days that I am having an extra hard day. The words fill me with such sadness and strength, all at the same time and they also remind me that no matter what happens in this life, you have to find a way to go on no matter how much things hurt.

I’ll never forget the day that I got the phone call about Simi. It was from a friend of mine, whom I don’t talk to very much so I remember thinking it was so strange she was calling. She started with the small talk. Your brothers were so little, I was pregnant with you. I was at home, just doing everyday mommy things. “Maya, Simi died.” said the voice on the end of the phone. “What do you mean? When? I don’t understand!” I could no longer understand what was being said. I set the phone down. I was trying my best to wrap my head about the news I was given but it seemed absolutely ridiculous to me. Not possible. Not this girl. They must have Simi mistaken for someone else. Not this girl, who was had such a presence and more beauty, personality, and fire then I had ever seen in another human being on this planet. It couldn’t be her. She could not just be gone. I called my mom, crying. “Mom. Tell me it’s not true!” My mom too, had to heard the news. “I’m sorry. I just heard today.” Fuck! I hung up. I spent the rest of the day, taking care of your brothers and thinking about Simi, of course. But it was her parents that I could not get out of my head. I had never in my life witnessed two parents that loved their child, more than the two of them and vise versa. She was their whole world. They were her whole world. How will they survive this? How will they go on? What will they do, without their daughter? The thought of this was so unfathomable to me, that I was left thinking that they just wouldn’t. That nobody survives something like this.

I went back to Washington for the funeral. I sat through it and I remember it all felt like a dream to me. I remember being so aware of having you in my tummy as I think I was about 5 or 6 months pregnant with you. I remember thinking, “How is this possible. How can I be sitting here with this life inside of me and my friend, is in a casket in front of me?” I left after the funeral was over, still not being able to wrap my head around any of it. I left Simi’s funeral and went back to my life in Arizona thinking about a reality that was so awful, but of course it would never be mine, right? How naive I was. I went back with a heavy heart and it was so obvious to me that the entire universe had changed without Simi here anymore to fill it with a sparkle that only existed in the world, due to her. The first holiday, without her I remember being really sad. It was New Years Eve and all I could do was sit at a table and cry. There was no celebrating and your daddy was respectful of that. It was a somber holiday to say the least. I clearly remember thinking though, “I feel sad? Think about how her parent’s feel. My sadness is only a sliver of what they are feeling.” Once again, it was so unfathomable to me, that I could not even imagine their pain. The New Year’s holiday after Simi being gone was never anything we really ever celebrated again. It just seemed stupid to me as she passed away on January 1st and her parents always weighed heavy on my mind.

I took the loss of Simi and continued on with our life, being extra grateful that I had your daddy and 3 healthy boys. I swear she has always been a big part of the reason that I wear my lipgloss brighter (even before you died) listened to my music louder, ran further, and loved harder than I ever had in my life, due to just knowing her. She made everyone around her feel like they could rule the world because, well.. why not? Limits didn’t exist and her free spirit soul was infectious to be around. She was unlike anyone on this earth. Then you got sick, Ro baby. And then you died. And since you have died, I seem to think about Simi a lot more than I used to. I think about what she would be doing if she were still her. I picture her face all the time. Her gorgeous smile and the most insanely beautiful red hair that there ever was. I wonder if the two of you, are together and if you are, I know you are having the time of your life. The two of you are probably giving everyone a run for their money, with your beauty and spitfire souls combined. It’s obvious you are doing the best you can, to give us the strength to go on in this life down here. I am trying to hard to continue to just breathe some days.

I sent Simi’s mom a text last week asking if she was in town and if she wanted to get coffee. She said she was and we made a plan to meet up. I went to her house today. As soon as she opened the door, my eyes were full of tears. “You look so much like Simi. Your eyes. So beautiful.” We hugged tightly the way only bereaved parents can do to one another. Hugs that are filled with so much pain, that you can psychically feel it when embracing. We sat and talked for hours. Time quickly slipped away after catching up, crying, drying eyes, memories and a little laughter, but not much today. It was a hard day, but there was comfort there too. The mother that I thought, would never survive the loss her daughter, because NOBODY survives that, right? She has survived it and has the scars and battle wounds to prove it. But you know what else she has, Ronan? That same sparkle in her eyes that reminds me so much of you. The sparkle in her eyes, that are filled with so much pain, is still there. The sparkle that only the most special people seem to have in this world. You know what a sucker I am for those sparkly eyed people in this world. They are a rare and special breed. Simi had it, too. I’ll never forget her sparkle for as long as I live.

You know what else, Ronan? The mama that I thought, would never survive losing you, has survived too. I won’t ever be better from this. I won’t ever be o.k. from this. I won’t ever get over this. All I can say is up to this point is, I have survived this. I am a fighter and a survivor and I will always be your mama. Forever and always. Just me and you, right baby? I’ll never forget how we used to say that to each other. I miss your squeaky little voice so much.

I’m going to end this here tonight. I’m not going to lie, I had a really hard time writing this. I struggled with the words a lot. I think it is because there are no words good enough to describe the beauty that Simi possessed. And there are no words awful enough to describe how empty this world is without her. I wish that these words  never had to be written because she should still be here and so should you. It should not be this way. Life is short, precious and a lot less beautiful without the two of you in it. I’ll never in my life understand any of this.

I miss you, I love you and I am so very sorry. I hope you are safe. Give Simi a smooch from me. I love you both.

xoxo

Happy Birthday to my Charisma, yesterday! And Huffington Post is RAD for the Rockstar Ronan shout out!

 

I didn’t write on here yesterday, but it was our dear Charisma’s Birthday. Happy Birthday to one of the truest souls to walk this planet. We are so lucky to have you in our life. I love you.

Love,

Maya and Ronan

 

http://www.huffingtonpost.com/2012/07/23/charisma-carpenter_n_1693894.html

Your song for the night, Ro baby. I will love you till the end of time. And beyond that.

 

 

 

http://www.youtube.com/watch?v=JRWox-i6aAk&list=ALYL4kY05133r8ZzxAu7t9KYxVMWVB17WS&index=3&feature=plcp

I’ve always loved those Muppets.

 

 

http://www.huffingtonpost.com/2012/07/23/jim-henson-company-chick-fil-a-anti-gay_n_1694809.html

Nature is my church and you are my teacher


Ronan. Hi babydoll. We are still at your Nana’s house. It feels like we’ve been here, forever. I don’t miss home. I do miss your daddy. He can’t come out this trip, which is killing us both, but we are both doing our best. All that time he took off during May/June has left him with a ton to catch up on. I hate knowing that he is at home at night, in our empty house with just your urn, to keep him company. It is so wrong, on so many levels. I’m doing my best to play the role of both parents here. Your Papa Jim and Nana have been a big help. Your brothers have been really good. We have been doing so much…kind of going non-stop. Last night, your Papa Jim wanted to take your brothers out on his boat, night fishing. “What do you mean, they’ll be gone until midnight? No way! I already have one dead child, I don’t need anymore!” I said to your Nana with a look of terror on my face. “They aren’t going.” But then your brothers, begged. And begged some more. Normally, I would not give into the begging. I thought it through. Night fishing with Papa Jim. Who knows when this will happen again. New memories for them. An adventure. Something they will treasure for the rest of their lives. “You can go if you both promise me this. No fighting on the boat. I want text message updates every hour. Under NO circumstance does your life jacket come off. EVER. You follow the rules and listen to everything your Papa says. Pinky promise me.” We hooked pinkies. “Thanks, mom!” They were so excited. I got text messages, every hour on the hour. The cutest little text messages. Your brothers are so sweet, it kills me that they have to go through any of this. I am trying my best for them, Ronan. And for you. I think I am doing an alright job. I feel like I am doing much better for them, then I was doing last year at this time. Everyday is still as struggle, but it is easier for me to be more present and engaged with them, then it used to be. I decided awhile ago that for as much pain as I am in, I cannot ruin their lives, even more by bailing out. They don’t deserve that. They don’t deserve any of this, but what happened to you was not in my control. What happens to them, due the the way I react to the loss of you, is in my control due to the decisions I make. I am trying to be a good mom to them still, Ronan. I am trying so very hard. I think somedays, I get it right. I hope they will forgive me for the days that I just can’t seem to pull my shit together. They don’t happen very often. But I hate that they have had to see them at all. 

Your brothers and Papa got home around midnight. They caught a huge Salmon. I am so glad they did. That made their adventure, even better. We all 3 slept in again and I woke up to hearing the giggles and laughs coming from outside. I went out to see what was going on. Ahhhhh… the cleaning of the salmon had begun. Liam was gagging and would not get near it. Quinn was gloved like a freaking serial killer and was cutting away with a huge knife, helping your Papa, clean the thing. I got there just in time to snap away so great pictures. It was a beauty of a fish. Quinn then proceeded to take the head of the fish and inform me that he was a doctor, performing surgery. I watched him as he cut away and dissected the entire head of the fish down to the eyeballs. This might make some mom’s squeamish. Not your mama. I was right in there with him, helping him with all the guts and blood. Sometimes he is so much like me, that it is eerie. I’ve never been one to be squeamish over guts and blood. But it does take me back to you, of course. All of the bloody noses that we had to deal with. I will never forget those, Ronan. They haunt me at all times of the day. I’m so sorry baby. For all you went through and even after everything, nothing could save you. How could that even be? I’ll never ever understand, Ronan. I would have done anything to save you. I would have taken you anywhere. I look back and regret so much. Even though your daddy still swears we did all we could do. That will never be good enough for me.

After the cleaning/operation on Mr. Fish, we went to Oregon to hike Multnomah Falls. These two states, often leave me breathless Ronan. There is never ending beauty, everywhere. I miss it here, so very much. I have for a really long time. We had the best day with your Papa. It was day full of simple surprises. The deer that we saw on our hike, that was just sitting there, eating the leaves not even 3 feet from us. I saw it and immediately thought of you. “Oh, a gift from Ronan.” I think every beautiful thing I see, feel, or hear in my life is a gift from you. It was so perfect, calm and sweet. The deer wasn’t scared of us, it just nibbled on it’s food, while staring into my eyes. It jumped away after somebody came by with a dog. I could have sat and started at it, forever. It was almost the most perfect day. But you should have been there, too. I kept looking for you everywhere and imagining what you would have been doing. I do that with everything we do, without you. I know you would have been right in there with Quinny, dissecting the fish. I know you would have been right there with Liam, throwing rocks into the waterfall. I know you would have made me carry you, halfway up our hike. I know you would have been eating that ice cream cone, with your Papa and giggling with him in the car. I know these things, even without you here to do them. I live my life imagining you this way every second of every day. Nothing I do in my life, is without you.

I’m going to end this here tonight now, Ronan. I am a blubbering mess and I am trying not to cry too much because I don’t want to wake up your brothers and make them sad. They are both sleeping right next to me. We miss you. We wish you were here. I love you, little man. I miss you so very much. I hope you are safe. Sweet dreams, baby doll.

xoxo

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I also had to post Derrick’s amazing catch. So proud of our little man, who is no longer little:( When did that happen?

 

 

 

http://www.youtube.com/watch?v=ILDWdTMsan4

  • Instagram is my BFF

    Meeeoowww. Hiding from the world. #ronan #fucancer #youcantfindme #bookporn #booksfordaaayyyssss #myhappyplace Where was the Gold for all the kids in September who are fighting cancer? Gee, thanks @todayshow. #ronan #beboldgogold #kidsgetcancertoo I took Pearl to the library today. I don't think she's going to be allowed back. #ronan #fucancer #fuckinpearl #blacksheep #rebel #kickedout #bannedforlife #boozebeforebooks
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