A Poppy Shower? O.k. Only if tradition does not exist.

 

Ronan. I survived your 18 months. It rained. Of course it did. It was a hard day with a lot of tears but I didn’t die. If pain alone could kill me, I would have died about a million times by now. I’ve been busy but not in my normal way of running around like a chicken with it’s head cut off. I’ve been doing a lot of things around our house, which you know kills me. I’ve been spending a lot of time with your brothers and daddy. We have gone out to eat a couple of times, as a family. “Table for 4 please,” never becomes easier to say. I always have to say it fighting back tears. I told Rita yesterday that being pregnant makes me suicidal. I was kind of joking but kind of not. I feel really alone and isolated with this pregnancy. Like I am the only mother in the world who has lost a child and is now carrying another life inside of her. I know there are other mothers out there, who have gone through this as well. But they are not really in my inner circle, unless you count Dr. Jo. So for the most part, I am alone in this. Nobody else that I am in contact with, knows what this could possibly feel like. Instead this pregnancy is filled with a lot of happiness from the outside world. As if this will fix everything. It doesn’t. It will not. I know this baby will bring a lot of smiles, but my smiles will always come with tears; for the rest of my life. The pain behind my eyes, will never go away.

I have been trying to plan our second annual Macegiving. You know since last year I banned Thanksgiving at our house. We made our own day and it revolved around your Auntie Macy and doing whatever the hell we wanted. No formal Thanksgiving Day existed. Macy will fly in, just as she did last year to save us from this wretched holiday. Maybe this year, I feel as if I have more to be thankful for, but I still think it is bullshit that I have to sit around a table, without you. Last year, I wore my “Fuck Cancer,” shirt. I shot a bb gun. We ate Chinese Food, let off fireworks and beat the shit out of a piñata. This year will be more of the same but I will cook some pies. I love cooking pies and miss it so much. We will have friends come and go through out the day. Nothing formal or stuffy. No fancy clothes or fake smiles required. No prayers or sitting around a table together saying what it is, we are thankful for. Our day will be tough, as all holidays are, but thankfully we have some great friends to help us get through it. The best fucking friends on the planet.

Poppy is growing like crazy. So is my stomach. Never in my life have I eaten healthier, not because I want to, but because she requires it. I’m a healthy eater anyway, but Little Miss Poppy, has taken it to a whole new level. No meat, not much candy, no fast food, nothing greasy or processed. I’ve been living off of humus, fruit, veggies, some cheese here and there. The other day, I went to a restaurant with Stacy and Fernanda. Fernanda ordered a burger, Stacy the French Dip. “I’ll have the veggie platter, please.” They both looked at me like I was crazy. “WTF? I know! This Poppy only wants really healthy shit!” With all of you boys, I totally remember eating burgers, ice cream, etc… Stuff that you are supposed to enjoy when you are pregnant. Maybe it’s because she is a girl, that I want none of that stuff. I find it funny. I wonder if the second she is born, that I’ll be dying for my meat and candy galore again. Right now, sign me up for the beets, cauliflower, humus, apples, and whatever healthy stuff I can get my hands on. I even went to the movies a couple of weeks ago with Rita and pulled out cauliflower from my purse. It didn’t even seem weird to me until she pointed out that it was totally weird. Your little sister is quirky already and I kind of love it;) She is already taking after me.

Last week I got the news that the trial we funded with Solving Kids’ Cancer for Dr. Mosse at CHOP is a go. We sent our check in and I could not be more proud. Proud of you. Proud of us. Proud of all the people out there, sending us there hard-earned money. A dollar here, a dollar there…. It all adds up. I am so proud to be partnering up with another AMAZING childhood cancer foundation. Believe me, I have researched them ALL. Solving Kids’ Cancer is the best of the best. I cannot wait to collaborate with them for the many more things that we have in the works. Together, we are going to change this game, big time. I kept my word to Dr. Mosse. I said from the very beginning the first thing we funded, would be with her. Although she never treated you, Ronan, she navigated us down this road and at the end of the day was the only person to look me in the eyes and say, “I am so sorry. We as a medical community, have failed you.” Those words, one of the worst things I have ever had to hear, came across not in a sharp and hurtful way, but full of compassion and true sadness. Her eyes were full of the dignity and grace that you deserved and that we as parents, so needed. I believe in the work she is doing. I believe in her as not only a doctor, but a human being. I know what she is doing, will make a difference. I am so happy to support her in any way that we can. Thank you all so much, for making this happen. This would not have happened, without you.

Tonight I went to Chelsea’s Kitchen for a little pow wow of a dinner. I met up with some of our lovies for an impromptu meeting about some things we have in the works. We talked about some foundation things but also some personal things. I have some of my closest girlfriends who want to throw me a baby shower. I’ve been fighting them on it but I know I am not going to win. We sat tonight and talked about how they know the “traditional,” baby shower, won’t fly for me. “Please, I don’t want to sit around, drink punch and open gifts. Please, I don’t want to play the jelly bean game where you guess how many of them are in a baby bottle. Please, I don’t want to have everyone guess how big my belly is with a string. I will throw up and run out of the room if any of that takes place.” Please I just want my Ronan back, too. Can’t I have Ronan and Poppy both? I cannot. At the end of the night the girls came up with some ideas for this very non traditional baby shower which I will know nothing about as I am just showing up. All of their ideas made me laugh and seems very Maya like which means it goes against the norm of everything baby shower required. My anxiety is a lot less now. I am so thankful for the friends I have, who understand that a traditional shower would only send me screaming out of the room, crying. I am thankful for the friends who embrace the me for being me and love me so much. I am thankful that they are still here and were brave enough to never go away, even when I know I was not capable of being a friend to anyone. I am thankful for them loving me and never judging. Because they understand that nobody has the right to judge a grieving mother. It’s because of their gifts that I will forever spend the rest of my life, giving them what I have left. Which at times, may only be a little or it may be a lot. Either way, they do not care. They love me enough to stand by my side to know that when I am ready, I will come back. I feel like I have in a lot of ways. I am so glad they waited for me. I am so glad they never gave up, even after you left Ronan. They are still here and still fighting. That is also because they love you, so very much. I know there was a time in my life when I thought I didn’t need anybody. All I wanted to do, was push everyone away. The friends that are still here are the one’s who never stopped fighting for you, for me, for us, for our family. I will forever be so thankful for them. I now know that I very much needed them all so badly. I would be so sad, if they had gone away which they easily could have done but chose not to do. Thank you to all of you, who are still here. I love you so very much.

Alright little man. I am beat. Poppy is still making me pretty tired. I am dreaming so vividly but still not seeing you which I don’t understand. I talk about you, watch everyone else talk about you, your death seems to be in my dreams all of the time, but never your little face. I would give anything to see it. I think about you all of the time. You would think this would mean I get to see you in my dreams too. I don’t. I hardly ever do. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

 

“From what I can see here, it looks like you are having a baby…”

Ronan. Today, was not a day I expected at all. I had an early appointment at The Fetal&Women’s Center of Arizona. I had to take your brothers because the appointment was so early. Mandy Bee offered to come and sit with them while I went back for my appointment. As we were sitting there waiting, Mandy goes, “You know you can find out the sex of the baby here, right?” I told her I wasn’t aware of that as I thought I had to wait until I saw my OBGYN in a couple more weeks. She told me how she found out at 12 weeks here with both of her boys. I am further along than that, but not much. As soon as my name was called, I got up and asked if it was o.k. if everybody came back in the room with me. The sweet lady told me it was. Your brothers sat playing on their iPads and I was on the table, getting my little belly lubed up. Pretty soon, Poppy was on the big screen. My heart started pounding. So loudly I was sure that everyone in the room was going to hear it. The lady started measuring some things. Mandy chirped up, “Can you tell the sex of the baby today?” The technician told her she indeed could. She asked me if I would like to know. I said, “Sure!” Of course you know I am so impatient when it comes to all things being pregnant. She put the little wand over my belly. I felt myself panic. Oh god. Ronan really wanted a girl. Please. I really wanted a girl. For as much as I can say all I care about is a healthy baby, the truth is, a little girl would mean so much mainly for the fact that you wanted a baby sister. The picture came on the screen. I heard her say it was a boy, before she said anything at all. “From what I can see here, it looks like you are having a baby girl.” “Really? Are you sure?” The technician told me she was about 90% sure. I could not believe my ears. I started bawling, tears falling everywhere. Mandy came over and grabbed my head and kissed the top of it. I buried my head in her shoulder trying to control myself. It was no use. Mascara and snot everywhere. I don’t think I have stopped crying, the entire day. Quinn was over the moon. Liam chirped up that there was a 10% chance that is was not a girl. So typical. So funny. I tried to call your daddy. He didn’t answer. I had Quinn call your Nana. She thought we were all lying to her. No way could it really be a girl.

I finally got your daddy on the phone. As much as I hated to tell him this on the phone because he is in Vegas, there was NO way I couldn’t tell him. “Guess what?” I said, tears still falling everywhere. Your daddy never knows what he’s going to get with me. It could have been everything from “I’m leaving for Tibet to I bought a dog.” I think he was really relieved when he heard me say, “We’re having a baby girl.” He was so happy. He said he knew it. I think deep down, I knew it too, but the confirmation was nice today. I spent the rest of the morning calling and texting our closest peeps. Fernanda. Stacy. Becca. Macy. Liz. Dr. Jo. Melissa. Gay. Tricia. Danielle. Marisa. Carolyn. Charisma. Kass. Rach. Robyn. Rissy Girl. Katie. Meg. Our Fairy RoMo. It is her birthday today. Can you believe that shit?! I found out on her birthday, which was not planned at all! This appointment just happened to fall on her birthday! Talk about another huge sign! There was one person I had not told yet. Your Sparkly. He is the last person I told today. This was not something I was going to tell him over the phone. I had to tell him I was pregnant with this baby, over the phone. I NEVER get to make him smile with happy news, because all the news I sit and share with him is usually so fucking sad or me venting. I sent him a text. “Where are you?” He responded with “In a meeting. Are you o.k.?” I said I was o.k. That I needed to see him today. “I’ll see you in 20 minutes. Come to my office.” I met him there. I was in the middle of sending an email when he came down to get me. I didn’t see him walk up, I only heard him barking some smart ass remark to me, like he always does. He sat down. I told him to hang on, that if I didn’t send this email, I would forget to do it.” He sat. I kind of crawled over to him and gave him a big hug. He laughed at that. “What’s going on? You look pretty today. You know what the baby is, don’t you.” I smiled. “Yup. It’s a baby girl.” I watched his eyes light up in a way that his often do, when he is truly happy. I was so glad I got to tell him my news in person. “I knew you were having a baby girl. I told you that. Ahhhh! You with a baby girl. Finally, someone you can do all those girly things with that you love doing. You two are going to be something else.” I laughed and talked about you a little bit. How much you wanted a baby sister. I am still trying to absorb this all. I cannot believe all the little blessings you are putting in our lives. I left your Sparkly and as I got in the car, I sent him a quick text. “You are going to make the best grand poppy ever. She is so lucky to have you.” He responded back with a simple, “I will.” I said, “I know. Thank you.”

The rest of my day, played out in a way that I don’t think I can take much more. I got a text from Carolyn saying to call her that she had some news. I, of course went to, “Oh fuck. It’s got to be something bad, because too many good things are happening lately.” I texted her back, “Is it good news or bad news?” I was expecting the bad from my friend and foundation president. She responded with, “It might just be the BEST news ever.” I called her. I did not think anything else could happen today, that would leave me speechless. I was wrong. Tears all over. As of now, I can’t talk about our news. All I can say is I cannot believe all of this. I am overwhelmed. I am floored. I cannot believe how truly hard you are working, Ronan. I have never believed in something more in my life, then you. You are making so many amazing things happen. I ended the day with Stacy at Fernanda’s house. I told her the Carolyn news. She could not believe it. A baby girl and now this?! She looked at me and said, “How are you not so overwhelmed?! Aye! Maya! You know this is all Ronan. You know that you could have been in bed for the past year, and we would have all been o.k. with that. Because that would have been totally acceptable! But you chose not to do that, and look at everything is happening.!” I started to cry. I said I knew. I knew but I also knew from day one, that I couldn’t do that. I have to make you proud, Ronan. Lying in bed for the past year, would not have made you proud. But I appreciated Fernanda saying that. I know she meant it because she is such a true friend like that. All of my friends are. I am so lucky to have them all. They stuck by me during my darkest of days. Even on my darkest of days, when nobody knew what to do with me, they stood by me. They didn’t judge me. They may have gently slapped me here and there, but they didn’t talk ill or abandon me or whisper behind my back. This is why they are still in my life. Because they never gave up on the you and me part of this. They just let me be, trusting in me to come around when I needed to come around. For that, I will forever be so thankful. For that, they will forever be my sisters. This baby girl, is going to have so many beautiful aunties. With you watching over her, with a daddy like yours, and your big brothers, too. This baby girl is going to be the most loved little baby girl in the world. Thank you, Ronan. I so badly wish you were here. More than anything. She will be a part of you and I cannot wait to meet her. Please make her extra extra spicy.

Today, was a really happy day full of never-ending tears. Tears of both happiness and sadness. Today, my tears were more happy. I’m soaking that up, because it doesn’t happen often. I miss you so much. I love you so much. I hope you are safe. Please keep this baby girl safe for me, Ronan. I know you will.

xoxo

Happiest Birthday ever to our Fairy RoMo. You are pure magic and are totally going to make the best fucking godmother ever. Poppy is so lucky. We all are. I love you.

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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

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

 

A death day and a birthday

 

 

 

Ronan. May 9th came and went. It was a gut wrenchingly hard day. I did my best. I did all I could do. I did not die. It was a rainy day, as it should have been. I got up, showered, dressed. I went and had lunch with your daddy and brothers on this awful, awful day. We had planned a day of hiking. Just as we finished lunch, your purple balloons arrived. 5 of them. Sent by the most thoughtful board members and little intern on the planet. The one’s who put so much thought and effort into sending us off, on this trip, that we have had gifts to open every single day that we have been gone. All things inspired by you. Things that have made us laugh, be silly, and wild and free. Things that have made us cry, like the 5 purple balloons. Who thinks to have purple balloons sent to our hotel, so we can let them go for you because they know we are in a small town, and wouldn’t be able to find them anywhere? My board members. My intern. My sisters. My family. This is why they are the one’s I trusted with your candy cart for Phoenix Children’s Hospital for your birthday. This is why they sit on your foundation board. Because they know this is not just business. This is about unconditional love, thoughtfulness, and helping when help is needed most. They know this without me having to say a word. This Ronan, is the truest form of unconditional love. This Ronan, is why after all of this, I still think I am lucky and blessed. So very blessed even without you. I know these little blessings are all gifts from you, to keep me going. Thank you so much. I don’t know what I would do without them.

After lunch, I grabbed the 5 purple balloons and hugged the front desk girl and told her thank you with tears streaming down my cheeks. One of my lovely little board members, filled her in on the reason for our “vacation.” She knew the reason for us being there. She looked at me and said, “You are welcome. Please, let me know if you need anything.” I told her I would. We headed out for our hike. We drove to somewhere that was recommended to us. I let your daddy navigate and take us to our destination. I sat, numb, and totally zoned out. I tried to let myself get lost in the beauty around us, but it was impossible to take me away from the world I live in, without you. Once we arrived, we scoped out the trails. We ran through the woods down towards the water. I carried your 5 balloons. We all stood together and each of us, took a purple balloon. Your daddy and I held yours, together. We let them go and watched them float away. We clung on to each other, and I buried my head into your daddy’s shoulders. We stayed that way for a while. Your brothers didn’t really know what to do as they seem to be pretty unfazed by everything that is going on around us. As 8 year olds should be. We went on a long hike through the woods. Every stick I saw, ever rocked I threw, every mud puddle I stepped in, was a slap in the face to me. It hurt, so much. It is so wrong that you are not here, running through that forest, with your brothers like you should have been. You would have loved every second of our family hike. It was the most exhausting hike of my life. It wasn’t physically hard. It was the mental part that I struggled with. Hiking on the day that you died, because you died, because nobody knew what else to do. Talk about a mind fuck of a day.

I heard about the storm in Phoenix on your death day, Ro. A spicy storm on May 9th that could have only been caused by you. I have no doubt about that. I loved hearing all about your storm. Nobody could believe it. The people that love you the most, could. You made it pour down on me, in Maine, and you proved your point with your spicy little storm in Phoenix as well. You are such a little badass.

I don’t remember the rest of the day or night. All I know is I went to sleep, exhausted. No Ambien needed. I have not taken that, since the first night we were on our trip. I have slept alright without it.

I have been so preoccupied with your death day, that it is as if your birthday has come up from nowhere and knocked me down so hard on my ass, that today, I did not know if I could get up. I did. I mustered up the energy to go out for a while to explore our new surroundings as we switched locations last night. A new destination was a good change of pace. We explored for a few hours and then headed back to our hotel. I had a raging headache probably due to all the crying I had done. I crawled in bed while your brothers played outside and your daddy worked. I needed to just shut down for a couple of hours, so I did. I got up when I got a text message from one of our lovies here. She was close by our little town and came by to see us. The two of us went out and grabbed a quick bite to eat. She knew I was having a hard day. She knows first hand, all too well about this life. We quietly talked about all things that two mom’s should never have to talk about. Kids getting cancer. Kids dying from cancer. The how’s, the why’s, the unfairness of it all. I spent the hour at dinner, looking across the table at my friend who has the same eyes as mine. One’s filled with so much pain, that it is palpable. But there is a fire there, too. I see her son, in her eyes, every time I look into them. It gives me strength. I left her still feeling pretty sad, but feeling better about your upcoming birthday. I left there, feeling like I could get through tomorrow, without you.

I came out of the restaurant and I had 16 text messages on my phone. FUCK. I had forgotten about the little insane text message party I had with Rita, before going to dinner. The one where I was laying in bed, sobbing, and she just happened to check in on me. The one where I said I wanted to die, and how many Ambien would it take to overdose? She responded right away with one could not overdose on Ambien, but instead they will lose all control of their bodily functions and shit themselves. Well, that sounded like a shitty plan. I would not like to do that. I then asked her the best way to commit suicide, and told her I was googling it. I was. But not because I wanted to really die; mostly out of curiosity. Rita told me she was not playing this bullshit game with me and gave me the sternest text messaging spanking I’ve ever gotten in my life. I threw my phone in my purse, forgot all about our conversation, and headed out the door to dinner. Once I saw my phone, on text message overload, I remembered what had gone down. I quickly responded that I was alright, so sorry, and I would call her in a few. I got home and called the two people I needed to check in with.

Your Fernanda was first. Ronan. Do you know what she did? It is unbelievable. I left for this trip, and I pretty much left my lovely little board members in charge of Ronan’s Day of Love at PCH. I knew I couldn’t be there, so I left the ones I trust most in this world, in charge of it. I knew they would not let us down. I know how hard this was for all of them to do; but they didn’t blink twice when I asked them. They were honored, to be honoring you in a way that meant so much to me. We have planned for a couple of months now. The candy cart, the balloons, the Star Wars characters to visit the kids. Who would be there, helping. A day of love at PCH, all inspired by you, to make others smile and happy and to forget about the fact that they are in a hospital, fighting this beast that no child should ever have to fight. I had an idea about what it is I wanted for your candy cart, but I gave Fernanda free rein to do whatever it is, she wanted. What she put together, ended up being a freaking masterpiece. I don’t know how she did it, but she did. She spent all day Friday, “Pimping your Wagon,” as she said. She had some great helpers, this I know. Thank you, all. So much. Ronan’s purple candy wagon, complete with an iPod and speakers, for the playlist I made, not to mention a secret hidden zombie underneath, is something you would have gone crazy over, Ronan. It was everything you. It was all you. I could not have done a better job myself. This is the reason, your Fernanda wears your ashes that I gave her, around her neck. Because she knows you inside and out. Because you are her Twinkle Twinkle Little Star. Forever and always.

I called her, I broke down and cried, I told her thank you over and over. I listened to her voice and let her put her little spell on me that she always does. The one where she calms me down and takes me away to a world where only you and I exist and she reminds me to remember this. That you are still here, with me. That you are mine and I am forever yours. Nobody else can do this for me, but her. I hung up with her feeling a little better. I had to call Rita, next. Our very long conversation can be summed up best by this.

Me: I am so fucking sorry. I should not have texted you that I want to kill myself crap. That was not o.k. I thought you knew I was kind of joking. You know me. You know I’m not going to do anything.

Her: You are a mother fucker. You are not allowed to do that to me, set the phone down, and not answer it. EVER! I did not know if you were serious or not. I thought you were really dead. I thought you were really dead, but you know what Fernanda told me? She told me this. “Listen, Rita. I believe Maya wants to die, everyday. But not by her own hands. Do you know how I know Maya will not actually do anything? Because she wears lipgloss. Because she gets manicures and pedicures. Because she puts on make-up and fixes her hair. Because this shows me that for all the pain she’s in, she has a shred of self-love left. She takes care of herself by doing these things. We can all be concerned if she stops showering and wearing lipgloss. Until then, she is alright.”

Rita and I were both in stitches. Only Fernanda could rationalize my madness by saying the key to me not taking my own life, is because I wear lipgloss. Only Fernanda, could make it make perfect sense because it absolutely does. I told Rita, I was sorry again. I truly was. I didn’t mean to make her worry. I was in a bad place and I was venting but it still was not right to do. I know I can be a jackass sometimes. I am thankful she loves me enough to forgive me. I fell asleep last night, cuddled up to your Liam. I was missing you extra much. He felt extra soft and snuggly to me. I soaked him in for the rest of the night, knowing what I had to wake up to. But it was another Ambien free night. I was a good girl, for you.

I woke up, feeling sick to my stomach. Ronan’s 5th Birthday day. I didn’t know what to do. I threw on my clothes with your daddy still sleeping and your brothers were just starting to stir. Out the door for a run I went. A little run that turned into a 2 hour run, partly due the detour I took, to sit in the middle of the forest to sob about you, and partly due to the fact that I got lost. Lost on your 5th birthday, without you. Seemed pretty fitting, actually. I ended up finding my way home, Ronan. I always do.

I made it through the day, thanks to the help of your daddy, brothers, and friends. The 4 of us had a low-key day/night. We all wore purple, from head to toe. I played Lacrosse out in the big, grassy lawn with your brothers. There spent the day laughing and giggling as they should have. I have yet to go on to Facebook but I swear it seems as people all over the world were out doing crazy, kind-hearted things for you. I am moved beyond words by just a fraction of the stories that I have heard. They fill me with a bittersweet hopefulness that I never wanted, but now it will always be mine. I will treat this as a gift. I have no choice. This life I live now, Ronan… is one filled with all things beauty and pain. They will always go hand in hand. I have to learn how to let them work together, while being respectful of one another. It’s a heavy-hearted job but it is my job to do. After today, there is the most amazing proof that I am not doing this alone. So many of my family, friends, ex friends, old friends, new friends, and strangers are in this for the long haul, too. Look at all you’ve done and it’s only been a year, sweet boy. Imagine what we will do, in this lifetime together. So many amazing things. I know this.

To everyone out there, who spent today, honoring my Ronan by being extra kind, spicy, loving, honest, brave, caring, wild and free. Thank you. So much. You are getting me through my darkest days. You are making a difference. You are making him, so very proud. I love you all. Without you, this would not be happening. It is because of your loyalty and love that this world is going to change. Thank you for believing this in your hearts and souls and for being grateful for what it is you have. No matter how much or how little because you all get what truly is important. LOVE and HEALTH. That’s it. Those are the only two things that matter in life. If you have those two things, you have everything.

One last little shout out tonight, Ronan. My lovely little board members, my intern Rissy, and sissy, Liz. I know today was so hard for all of you. Words cannot even touch how thankful I am. You took Ronan’s birthday and made the day of so many parents, kids, siblings, nurses, and staff at Phoenix Children’s Hospital. You made them smile. You gave them a good day full of warmth and love. That is priceless. You all are priceless. Thank you for all of your hard work, love and turning today into a day that was all about Ronan, without it having to be, “All about Ronan.” I am blown away at how perfect everything turned out, but not surprised. Just very, very humbled and grateful. I love you all, so much. I know he is so proud. Thank you, thank you, thank you.

Alright my Ronan. I need to end this now. Happy 5th Birthday. You would have been the most beautiful 5-year-old to walk this planet. This is beyond fucked up. This is beyond unfair. I am so sorry. I made one wish for you tonight. That I of course, hope you are safe. I love you to the moon and back. I will fix this. I will make this better. I won’t break my promise to you. I promise on my life, that I choose to live. Because this living thing is a choice and I am not going to waste it. I will live for you. Until you are ready for me to be with you, once again. I love you. Sweet dreams.

xoxo

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Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

http://www.caringbridge.org/visit/benpurcell/journal

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Valentine’s Day is for Suckers

Ronan. All I want for this Valentine’s Day (aka the STUPIDEST holiday ever) is you back. Since that cannot happen, I am going to work really hard to make ROentine’s Day, somewhat nice. I’ve ordered our cupcakes to drop off to our lovies at PCH tomorrow since that is what we did last year. I am going to do it again for you, this year. Your daddy asked if I wanted to go out tomorrow night. I looked at him like he had 12 heads and said, “Not unless you are letting me go out, armed with a machete.” He said he would not, so we will stay in. Although going out, with a machete sounds like much more fun. You know, I wonder if I will like ANY holiday again. Halloween still seems alright… because it was your favorite. I’ve never been a big fan of Valentine’s Day. Now, it seems extra stupid but that could just be because I am a mad/sad/angry/crazy mama now. Or it could just because I have always thought a holiday to celebrate, “LOVE,” was a commercialized scheme to buy overpriced red and puke me now pink shit. We should be celebrating love everyday. Especially if we have all of our kids. I don’t have that anymore so I get a hall pass to do whatever I want. So now, Valentine’s Day is for suckers and ROentine’s Day will take over. What will we do tomorrow? We will not wear pink. We will not wear Red. We will maybe wear all black because my heart now feels dead and black. But we will do nice things for other people. We will do something to make someone else, smile. We will drop off your cupcakes. We will not buy flowers which are a waste of money and all they do is DIE. Fuck flowers too. Add it to my list of things I hate. No flowers. Flowers are too pretty for our black broken soul.

Quinn has been sick the past couple of days. I’ve been playing the very patient, loving, nurturing mama role. Today, I’ve decided that I’ve had enough and only want you back so I can take care of you and your cancer. His cold/stomach ache is wearing thin on me. I had that moment, where I panicked and thought his stomach ache actually meant he has a mass in his tummy and it is cancer. I took him to the doctor to have him checked out. We were sent home with its nothing. We are of course, always skeptical as our mind now thinks it is the worst thing possible. Isn’t it fun, living in the world of your child died from cancer so now everyone is dying, too?? Love this life, Ro baby. It’s amazing.

What else has been going on???? Just the usual madness. Went hiking yesterday. Put on my Van Fuckin Halen shirt. Your daddy looked at me. “You cannot wear that hiking. Why do we always have to have these conversations?” I just looked at him. “Ronan is dead. I can do whatever I want. I’m wearing it hiking today.” I left the house in my shirt. Only one lady said something to me. She said, “Van who?” I said, “Van FUCKING Halen, lady!” She laughed. Ha! A stranger with a good sense of humor. I went with Mia’s mama, Sandra. So I had an extra reason to wear that shirt yesterday. Two cancer mama’s. One with a baby who is dead, the other mama with a baby who is in a wheelchair from her cancer treatments. I was prepared to defend us if we needed it. We didn’t. Everyone on that mountain knew better than to mess with us. They could probably see the anger/sadness in our eyes. I can guarantee you, we were the two most broken-hearted mama’s there. But it was nice to be with Sandra. We will have an unspoken bond/friendship for the rest of our lives. But I wish it didn’t happen this way.

Today, I stayed at home with Quinn. I was in the middle of my own pity party when a little text message popped up. Tears sprang to my eyes. No. NONONONONO. Fuck!!!!!!!!! Quinn watched me. “Mom. What’s wrong?” I just looked at him. “Nothing baby. Just a little sad. Just a sad day.” Your daddy came home to the rescue. I slipped out for a dark run. I had sent our favorite lovie an FUC (fuck you cancer) text which in turn, made my phone ring 10 minutes later.

Mr. Sparkly Eyes:”Where are you?”

“I’m running.” which was true but I was also running while crying hysterically so I know what I sounded like.

Mr. Sparkly Eyes: “I need you to stop. Stop running. Please go and sit down somewhere and listen to me.”

I sat. I listened. I also screamed, cried, sobbed, and yelled into the phone.

But I calmed down. I also laughed at something ridiculous that was said. I was also told not to give up. That FUC is nowhere close to being done. I stopped crying. I told him thank you. I looked up at the sky thanked you, for our lovie too. I promised you two I won’t ever give up. I won’t break my promise.

I continued my run. I didn’t listen to my music. I talked out loud to you instead. I begged you to keep working as hard as you are working…. I begged you to continue to push me. I begged you to watch over our little friend. I begged you to take care of some things up there, so I could take care of some things down here. I screamed how I never wanted this. How I only wanted you. I screamed that I would fix this because your death, will not be for nothing. I imagined living this life, with you again, but next time it happens and you get this disease, there will be a cure so you won’t have to die again. I just want you back now. I don’t want to have to wait to see you, until it is time.

I’m tired. I’m sad. But I don’t have a choice. This is not me, Ronan. I don’t want to do any of this, but I will. I will do this, because you are the one pushing me. I know this. I will listen to you for the rest of my life. I love you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Wild and free, together we will be

Ronan. Hello little bug. Guess what I did today. I spent the day doing things that I would normally not be doing; if you were still here. This happens to me a lot in this new life of mine. Sometimes, I feel as if I am living a double life. That I’m living the life of a person that I do not know at all. I’m trying to figure out who this new person is and if I like her or not. I still have not made up my mind about that. We shall see. I am thinking she is not going anywhere anytime soon. But I also know that I have no way of knowing that because as we have learned, life can be cruel and take you in an instant. And as we have learned, we have no control over when your time is up because death does not discriminate. I’m trying to remember that I am supposed to be making the most of every second, of everyday that I am “lucky,” to be alive. I don’t feel very lucky without you.

Today, I was honored at the Arizona Foothills Luncheon. It was weird. Weird in the way that people whom I did not know said things to me like, “Congratulations!” And I didn’t know how to respond so just coyly smiled and listened to the little voice in my head that said, “For what? My dead child? Oh, I know. So totally awesome!” I forget that there are people out there who think I’m inspiring as I am only listening to the way you are telling me to do this. So when I hear things like, “We are proud of you. You are so amazing!” My thought or response is usually just, “Well, he was amazing.” Because that’s all I know to be true, Ronan. That people should be proud of you, not me. People should be honoring you, not me. I’m simply just a vessel here left on earth, to carry out your mission because you were destined for greater things, right? I truly want to believe this last part. But of course, the selfish me does not want you to be destined for greater things and it pisses me off that you are gone and just not at home, cuddling in bed with me where you should be.

The luncheon was really nice though and I am grateful to AZ Foothills for not being afraid to take a chance on a girl like me as I know how sad and dark this story is. I am grateful that they can see beyond the sadness and the darkness of this story to the love that shines through, so brightly. Nobody can deny that no matter how many times I throw the fuck word out there and I scream, “I hate the world!!!!!!” at the top of my lungs. Our love story is undeniable and I am thankful that they chose to honor it today. I got to sit at a table full of our loveliest of lovelies and watch as they all wiped the tears from their eyes. Dr. JoRo got up and spoke for about 30 minutes. There was not a dry eye in the house. She talked about you a bit which I was not expecting…. but it was a nice surprise. She talked about life, death, kindness, sadness, laughter, love, and all things honest. It may have been a little too honest for some of the people in that room today. I wondered how many actually really walked away, grateful for the gift of watching one of the most beautiful souls on earth, speak. I hoped every single one of them. I wondered how many of them had taken care of their sick baby, who had cancer. I wondered if any of them knew what it was like to spend 8 months in cold, icy hospital rooms, fighting every second of everyday for a life that means more to them, then their own. Cleaning up vomit. Blood. Shit. Pee. Medicine. Spit. And feeling so grateful to do so because it meant LIFE. Not death. All while listening to the screams, cries, tantrums, of their child and other children around them. All while the rest of the world, ignores them because it can’t happen to them. I wondered if any of them knew how close a mother and a child grow, going through something like this together. How a bond is formed, unlike any other that exists in the world. I wondered if any of them could have imagined going through something like this only to have the love of their life, taken away from this world. To have watched as their child, slowly died. To have held their child as he or she took their last breath and fluttered their eyelids for one last time. I wondered if any of them, could have survived this and put on a green dress 8 months later to sit in a room full of women, who have not survived this. Only one woman in that room, had survived this today and that was me. For about .2 seconds, I was proud. But only for the reason that really matters. Because I knew you were watching over me today and I knew you felt proud. That’s all I care about as it is the only thing, that truly matters to me. Every single thing I do, every breath I take, every foot I put in front of the other, every tear I cry, smile I smile, everything I do in this life…. is for you. And I am so grateful for the gift of our love. I know I say this all the time, but it will change things. It is already changing things. I know we are just getting started, Ro baby. I know this.

So, the past couple of days have been pretty hard. But looking back, I’ve had some things happen that have made me laugh. Mostly shit that I hear myself saying or doing and I can’t believe that I am saying or doing. Sometimes, it makes others laugh which I swear to god, is the BEST medicine. When I make other people laugh, Ronan. OH.MY.GOD. You have no idea how good this makes me feel. Me, the girl with the saddest green eyes, still has the ability to make people laugh. For such a little thing, it means the world to me. These are the conversations over the past couple of days, that have given me a good chuckle. I hope they made you laugh too.

Last night, we were driving home from my very Fucky Sucky Unbirthday. As we were driving home, up on one of the hills by our house there is the most obnoxious, huge house. It is covered head to toe in Christmas lights. I mean covered. Every inch of the house, trees, cactus, etc….. My head immediately went to……” I wonder how much electricity those people are wasting, for their God damn Christmas lights. It could be going to Childhood Cancer. Think about all the money, people waste, for Christmas lights when it could ALL go to Childhood Cancer. America is so stupid. And ignorant. And blissfully blind.” Christmas lights, in my crazy, bereaved mind, should not exist anymore. I then said to myself…. “OMG. It’s January. It’s my birthday. Christmas is way over.” I said to your daddy, “Take me to the store.” He looked at me and said, “For what?” And I said, “For some eggs. I’m going to egg those assholes house, who still have their obnoxious Christmas lights up! It’s January 11th! Why do they still have their lights blaring?!” Your daddy then told me he would in fact, not drive me to the store, to get eggs, to egg the assholes house. I actually replied to him, “IT’S MY BIRTHDAY! I CAN DO WHATEVER I WANT! SO TAKE ME TO THE STORE, SO I CAN EGG THEIR HOUSE!” I quickly realized one of two things: 1), that I was acting like a bratty 13-year-old, which I often embrace, and 2) that this plan was not going to happen so I should just let it go. The thought of actually doing this, made me laugh so I let that be enough to satisfy me. I know you know I fully planned to escape during the middle of the night, to drive myself to the store to buy eggs and do this. I should have called my Mandy Bee to pick me up. We could have dressed up like real life Ninjas. Word to the wise. Take down the fucking Christmas lights. Christmas is OVER. Move on. And if you are too lazy to take them down, just don’t turn them on. You are blinding me with your obnoxious, asshole, stupidity.

I went to get the mail today and I had some random package come in it. I get a lot of these. A lot of the time, they are small things, from strangers and they always make me smile and cry. It’s the pure kindness that gets me the most. Today, I got a package and it didn’t say who it was from. I opened it up to find the best tee shirt EVER! It’s black and in bold white letters, it says, “Fuck you you fucking fuck.” It totally made my night. I proudly put this tee-shirt on, as your daddy was getting ready to take me out for a quick bite to eat, as your brothers are staying with your Mimi and Papa tonight. Your daddy once again, just looked at me. “You cannot wear that out of the house, in a public place. You need to listen to me. I do this for a living, you can get into trouble for that.” I just looked up at him. UGH. Why does he have to be such a rule follower?? You died of cancer so don’t I get a hall pass to wear/do/say/act any way I want? Turns out, that although I often feel this way, I do not. “I’m wearing it. It’s awesome. If I want to wear it, I can. I’m sorry you didn’t know what a rebel you married, I’m sorry it’s been so repressed and you now have to just get used to it.” You daddy started chuckling out loud at that one. He quickly informed me that he knew what he was in for, when he married me. Since he was trying so hard to be a good sport about it, I cut him some slack and put on a coat on over my shirt. But I only told him I was doing this because I was cold, not due to the fact that I was about to give him a heart attack. And I unzipped my coat in the restaurant; obviously Ronan. Rule breaker for life:)

While we sat in the restaurant, we sat and looked like the “normal,” couple that exists in society, everywhere I go. We ended up sitting next to this couple who had a child about your age. I tried to ignore this annoying couple tonight. I was trying my best not to let them rip my heart out because that should have been us, sitting there with you. I was doing a really good job until I noticed the toy that the little boy pulled out of his bag. It was a lego Star Wars toy. My eyes welled up with tears and I choked on the strawberry that I was trying to eat. The mom started talking really loudly about that book, “The Secret.” The Oprah book that had everyone raving a few years ago. I never bought into that horse shit of a book but apparently, when you put something out there in the world, that you want to happen badly enough…. if you want it enough, it can magically be yours, just by you putting it out there, Ro. Or it can also be said that, everything in life, is possible, nothing is impossible. There are no limits. Whatever you can dream of, can be yours, when you use The Secret.

Otherwise known as HORSE SHIT. I’m pretty sure, the people starving in Africa will not die…. due to “The Secret.” I’m pretty sure that the packed orphanages around the world, will not become empty….. due to “The Secret.” I’m pretty sure, the problem of homelessness, childhood cancer, kids dying in general, abused kids, drugged up parents who should not be fucking parents because they put their baby in the spin cycle of the washing machine….. will not disappear because of “The Secret.” I’m pretty sure, the fucking god damn Secret book, will not bring you back. But I listened tonight as this lady told her husband the power of ” The Secret.” and how it was going to bring her a new car this year, a fancier one. Your daddy watched me as I listened. Your daddy squeezed my hand. “I’m going to throw my strawberry at this ladies head, if she doesn’t shut up.” She didn’t shut up. I didn’t throw the strawberry at her head. I got up, walked past her and made sure she saw my tee-shirt instead. Her mouth dropped to the floor. I just smiled. I now know who sent this tee shirt. Word travels fast when you grow up in the smallest of towns with the biggest of hearts. Thank you, S. You truly are one of my little devils rocking this thing called life for me, when I cannot.

Tonight, your daddy looked at me, Ro and goes, “How long until you get a devil tattoo?” I just laughed. And I thought of you. My most spicy, little devil who was all things sweet, pure and innocent. My most beautiful little devil that rules my life and I wouldn’t have it any other way. I’ve never understood the angel/devil role. The angel always fucking annoyed me and it still does to this day. Why can’t the devil be an angel too? Why does the devil, have to be bad? Because that’s what society teaches us. That’s what religion teaches us. That’s fucking stupid. It’s called being brain washed. It’s called letting something “bad,” control your life and fear it. I say take that something, “bad,” and make it GOOD. Take that little devil and instead of making him evil, make him spicy with nothing but the purest intentions. Make him an outside of the box kind of thinker. Make him fix problems in all sorts of different ways, just not one formula. Not just one answer when the world is full of so many different answers. Make him brave, determined, fearless, smart, compassionate, loving, crazy, independent, sweet, kind, gentle, and unique. I have a little devil that sits on my shoulder all the time and that is you. You are all of those things to me and you always will be. The little devil who knows what it means to be naughty and nice, in the best way possible.

Alright Ro. I’ll get off my soapbox now. To each his own. Respectfully so. Wild and Free, together we will be. I love you to the moon and back. I miss you. Every second of everyday. Sweet dreams little man. I hope you are safe.

xoxo

P.S. I’m too tired to touch on this subject tonight so I’ll just leave it short and sweet.

Dear Mattel,

If you do not make that Barbie, with a bald head, for childhood cancer, then you are ASSHOLES and you will be disappointing so many people who you could so easily make smile. It’s a NO BRAINER. Please do not be morons here. We have enough of those in the world, ****cough cough**** Casey Anthony and her fucking “Webcast that was hacked.” Make it. Donate the money. But please be aware, of where you are actually donating the money to. Please donate it to somewhere, that is actually invested in finding better treatments in hopes for a cure. Don’t do this, to make a profit off of it. Trust me, nobody benefits from a dead child. Well, except the insurance and pharmaceutical companies, but that is a whole different story that I’m sure you are not interested in because this can’t happen, to you. I’m here to tell you it can.

Be active in spreading awareness. Just fucking do it.

Sincerely,

RoMama

Baby Danger Plan….. Activate!

Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.

After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.

I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.

I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.

I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.

Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.

I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.

7 Months but who’s counting? I am. I always will be.

Ronan. I wrote to you. On your 7 month day. I wrote to you around 2:30 a.m. May 9th was just 7 months ago. Feels like 7 years. I couldn’t sleep at all that night. I ended up making your daddy give me something to help me sleep. The screaming in my head wouldn’t stop. It stopped and I fell asleep. I don’t know where everything I wrote to you went , as it is not here anymore. It’s probably best that way. I’m sure what I had written down, wasn’t pretty. I’m not sure where the week went. It was busy. Non-stop. I’ve been a very busy mama. I had a meeting at T-Gen. They were kind enough to meet with me so I could get an idea about what it is, they are doing in regards to Neuroblastoma. I wanted to see what they are using the 4 million dollars that Dell has given them for. They are working with Dr. Giselle Sholler, whom you know I am very interested in. I have been reading everything about her that I can possibly find. She is on to something big. I look forward to the day I can meet her. I look forward to the day that she can retire, because she is going find a cure for this nasty disease. I sat in a room full of these people from T-Gen. I had to tell them all, a bit about your story. I’ve never really talked about you, in front of a room full of strangers, Ro. I much prefer hiding behind my computer. Glasses on. Hair up. No make-up. Music blaring. Did you see me? The way I was only able to give them the generic basics about what happened to you? The very business like story. I had on my best business like boots. My best business like jacket. My best business like face. Game face on. Because I knew if I said what I really wanted to say, that I would have ended up under the table, sobbing like a baby. How do you tell a room full of people, what you really want to say? How do you tell them the way the love of your life, was ripped out of your arms and how hard you fought to help them beat this disease? How you fought with everything in your entire body, only to fail. So clearly, I failed as a mother because I promised I’d save you, and I didn’t. How do you tell them the way you watched your child die, will haunt you for the rest of your life. So much so that most days you walk around feeling as if all the air has been sucked out of you. How you are now filled with such guilt and shame because you are certain you chose the wrong path for your child. Because if the right one had been chosen, you would still be here. Death would not have been the outcome, right? I know what you are saying. That this is not the case. Because if there were ever 2 parents, who knew this disease inside and out…. it was us. If there were ever two parents, who tried their hardest…. it was us. If there were ever two parents, who loved a little boy the most…. it was us. But it was not good enough Ronan. We failed. I hope I don’t always believe this, but the grief thing is still blinding me and beating me to a pulp. So much so that I have bruises all over my body and I have no idea where they have come from. The funny thing is, these bruises appear and I don’t even feel them so I don’t notice them until I look down and I see a huge black and blue mark on my leg. Or my arm. I just assume I don’t feel them, because I don’t feel much of anything anymore.

So, the meeting at T-Gen I took your Mr. Sparkly Eyes with me. I am so thankful he went as he has a way of knowing how to put my thoughts into words, without me having to say anything at all. Because he was there, though all of this. He watched the way this played out. He saw your smiles, listened to your laughs, watched my tears, listened to my screams, at sat back, helplessly, when there was nothing left to do. His insider’s/outsider’s perspective on this was useful as well. I get that I am the emotional mommy who just lost her son. He was able to play the role of the level-headed, logical one who loved you as well…. but not in the way that a mother loves her son. As soon as we left T-Gen I got the talk. The one that he is so good at giving. The one that went something like, “This is it. This is what you were meant to do. I don’t care how hard this gets, I don’t care how much you want to give up. You cannot. Do you hear me? You cannot. This is it. You are going to change this so that one day, when I am gone, you can look up there and give me a little wave and tell me you did it.” I couldn’t even reply to that one. I only choked back my tears and said something like, “Where are you going,??” Which in turn ended up in the,”I’m not going to live forever talk.” The one I choose to ignore, every time it comes up.

From T-Gen, I went home. Wiped out from the day. I had a board meeting to go to though so I had to man up as they say. I was dreading it. Our last one was a disaster. It was so painful and everyone was on edge. I expected this one to be the same way. It wasn’t. It was lovely, but long. 3 hours long. It ran really smoothly and all of our concerns were addressed but in the most loving way possible. After we wrapped things up, I looked around the room and felt a wave of warmth wash over me. Like something very big and magical was about to happen. All because of the women that I was surrounded with whom were all there for one reason. Because of you. Because they believe in you and they know they are going to be a part of something so beautiful and true. Something different and unique. Something that is going to change their lives…. for the better. They believe in you. They believe in me. That is more than I could ever ask for, Ro. I felt you all around us that entire night. Thank you for that, baby. I really needed that in the worst way possible.

I spent that next day, feeling pretty beat. I think the whole not sleeping thing, the T-Gen meeting, the board meeting, and not seeing Dr. Jo, caught up to me. Thursday came and I tried my very best to suck it up and carry on with the world. Mandy Bee spent the morning with me, doing distracting things. I was out with her for a couple of hours. I knew I was going to crack. I looked at her and told her that I needed to go home, as I was feeling like I couldn’t handle much more of the real world for the day. She took me home, helped me with a few things around the house and played the role of the best jewish mother that I have come to love, so much. She told me she could stay if I needed her to. I gave her one of my best bullshit smiles as she calls them and told her it was o.k. I needed the quiet time. I knew what was about to happen and I just had to give into it. She left. I crawled into bed and sobbed the rest of the day. Thankfully, Liam and Quinn stayed the night with Mimi and Papa so I didn’t have to put on a show for anyone. I got up to run to an appointment. I came back home. Your daddy and I were supposed to go to a concert. He came home. He saw my puffy eyes. I told him, I couldn’t go. I told him to please go without me, to have fun with his friends. I could tell he needed to blow off some steam. I told him I just wanted to stay in bed and be sad. I don’t do that often enough. I was in no mood to go out in public and pretend. Your daddy went. I stayed home. I cried for 15 hours that day and night. I cried for you until I could take no more. That’s when I had to take the little magic go to sleep pill. I thought all of that crying would have knocked me out. It didn’t. The screaming in my head and the silence of the house were too much to take. I passed out. I woke up feeling o.k. 7 months had arrived. I just had to make it through the day.

I had a busy busy busy Friday. I saw Dr. Jo. It was good. It’s always good. I had a lunch to go to after I left her. A lunch that turned your very sad 7 month day, into a very sweet day instead. I met with a new friend. I say new friend, because I have a feeling about this new person. You know that feeling when you meet somebody and you just kind of go, oh hello person I feel like I’ve known my entire life, but I’m just meeting for the first time, today. That is how I felt when I met this person. Her name is Kristi. Kristi Michaels. She knows that Rock Star person we talked about in a few posts before this one. She knows him, very, very well. She knows him, better than anyone. Hellos were said. Hugs were given. We hopped in her car where we sat for a good 20 minutes before leaving for lunch. We sat and talked. I guess we more cried, than talked. I was a mess. She was a mess. We sat and she listened as I told her about you and this sad story that nobody wants to hear about. Because childhood cancer is just too sad so people would rather ignore it because if you ignore it, surly it will go away, right Ro? Bullshit. Somewhere in the middle of all the tears, Kristi said Bret wanted my permission to do something in honor of you. He wanted to ask my permission to have a room at Barrows Medical Center, where he was treated for his brain aneurysm, named after you. Built for you. With your little face, smiling down at the kids below. A play place for the kids to go. A safe and happy place full of all things wild and free. Because you are that beautiful, Ronan, that nobody wants to forget your face. Kristi and Bret and going to make sure that you don’t get lost in all of this. They want to help make sure to help spread the word in any way possible, any way I need or want. This is just the beginning of great things to come. They know that it is not acceptable for kids to be dying of cancer due to the lack of funding and awareness. You should not have died. You just should not have, Ronan. This was not the way this was supposed to turn out. But for fucks sake, it did. And I swear to you, I’m not going to stop telling your story until people start to listen. And things start to change. Kristi was crying when she told me about this. She was also crying when she told me that Bret wore your bracelet in his Pet Smart campaign. And also, in their Christmas Card picture which she gave me while we sat in the car. I opened up their Christmas Card. This was after my little rant about Fuck the Holidays and Fuck Holiday Cards. I smiled when I looked at the faces on the card. I smiled because it was at that exact moment, that I knew that this family, staring back at me, was truer than true. It wasn’t a FAKE or PHONY holiday card, Ro! It was them. It was who they are. It was everything Rock and Roll and Love combined. Their card, told their story and no words were needed. Music. Tattoos. Dogs. Black. Dark. Edgy. But soft too. Smiles. And the best thing of all…. one of their little girls, is wearing a Santa Hat with little Devil Horns sticking out of the top. The exact kind of Santa Hat, I would have put you in Ronan. I smiled at this Christmas Card. It made my day.

We left for lunch after we composed ourselves. It was the kind of lunch where you find out you have a lot of things in common. Small town girls. Big city dreams, but small town girls at heart, forever. A love for nature. A belief in true love. How you both think, being a mom is the best thing ever. How you both believe in raising your kids in an open and honest world. Sometimes maybe a little too honest which others judge. You both tell those people, to fuck off. Because at the end of the day, you both know that as long as you are true to yourself and your family, nothing else matters. Because fucked up things happen everyday like kids dying. And you never know when everything could change in an instant. So you’d better make the best of this time by being true to where your heart leads you. Especially if it is wild and free. The best adventures are wild and free…. right baby? I know you knew this from the second you were born and it was the way you lived you life every single day. I cannot even begin to imagine the things you would have done in this world, Ronan….. had you been given the chance. At one point during lunch, my passion for you took over and I was blabbing about how I much I believe in you and how I refuse to do this any other way than the way that my heart is telling me to. The way, you are telling me to. I don’t remember exactly what I was saying, but Kristi looked at me and goes, “You remind me, so much of Bret.” This caught me off guard but in the best way possible. She then went on to tell me how if Bret would have listened to all the people in his life, telling him he was going nowhere, how he couldn’t sing, etc….. that he would have ended up a truck driver. He was told no, so many times. He didn’t listen. He kept going. He chased his dreams. He broke downs all the doors that were slammed in his face. He ignored all of the asshole people who for some sick and twisted reason, thrive on keeping others down. He is proof that if you believe in something enough, anything is possible. Anything. Even a cure for this fucking disease that killed you. A CURE. I said it. Dream big or go the fuck home.

After lunch, the 7 months since you left me lunch that actually turned out to be a beautiful day….. thank you, Kristi<3<3 I ran back to Dr. Jo’s. We had another little session with some of our lovelies, Ronan. I think they have been having a hard time…. trying so hard to understand all of this. They both just want to understand so badly what it is that I am going through…… and for as hard as they have been trying, I think they feel lost. I felt like Dr. Jo could make a little sense of this, more so than I can. I’m too caught up in it all. She is the expert not only experience, but education as well. Dr. Jo was sweet enough to meet with all of us, so she could listen to their concerns and she did her best to let them into the world that I now, live in. I think it was helpful. I hope it was to them. It was the least I could do. I know I say I want to be alone and push everyone away. Sometimes that is true. But some days it is not. I don’t want to lose everybody in this process. I want to make them understand even if it is just a tiny bit, without having to go through something like this. I don’t know if that is even possible, but I feel better knowing that I am trying when all I want to do is give up and not care. I care. I know I do. I’m too loving of a person, not to.

I took Mandy Bee barefoot hiking today with me. Because we are badass. I didn’t hike up the mountain. I ran. Barefoot. Take that, mother fucker cancer. I’d like to do it again, tomorrow. I didn’t feel a thing. Dr. Jo is leaving tonight for a week to a silent mediation retreat. I have been panicking. She sent me a text before she left. It said for me to please take good care of myself while she is gone. How she needs me as she can’t change this world, on her own. She’s not going to have to. You will help her, my bravest little boy. I know this.

Has this turned into a novel tonight or what? I’m sorry. That’s what I get for not keeping up with you. I hate the nights that I don’t write but my head has been a mess. I have much more to say, little one but I need to get some shut-eye. I’m feeling tired, which doesn’t happen naturally very often anymore. I miss you. I love you. I hope you are safe. I’ll forever be sorry.

G’nite baby doll.

xoxo

The Guest House
by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.