The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

Alright little one. I love you. I miss you. I hope you are safe. Sweet dreams. I love you to the moon and back.

xoxo

Fuck You, Cancer and a Fuck it all day

Ronan. It’s not time yet, right? No. Not yet. I still had a couple of days left with you. I woke up today, not knowing what day it was. I grabbed my phone and thought to myself, please don’t let it be the 8th. I let out a sigh of relief when I saw that it was only the 7th. The 7th I can deal with. The 8th I’m sad for. The 9th I’m scared for. It will be here before I know it. Everyone is scared. I got a text from Rita today telling me she was bloody scared for me. She said she is scared that I want to die the most yet. She said she is scared that I will forget our sacred ninja promise. I responded with the truth which is I want to die, every single day. But I won’t. I don’t care how painful this gets. I would not do something that would be so disrespectful to you. That’s really what it boils down to. Life is so precious. Dying by my own hands would be such a slap in the face to you. It’s the easy way out. It’s the selfish way out. I don’t take the easy way out with anything I do. And I’m not selfish. Except when I need to beĀ ,which is only because I have to take care of myself sometimes. And sometimes taking care of myself makes me seem selfish. Fuck it. I don’t really care. Is that selfish? Probably. But I think I’ve earned that right. I won’t do that to you, Ronan. I won’t off myself like I often dream about. You know I think I failed you. I told Rita I will not fail you, again, by not saving myself. I will not let cancer destroy everything that you are trying to do in this very broken world. Cancer may have taken my soul, but it will not take my spirit. I won’t let it, Ro. I won’t let it for you.

Today, we slept in a bit around here. I fell asleep easily last night, without Ambien, but it was late when I did. I fell asleep and stayed asleep which rarely happens. I needed it. I woke up to your over-anxious brothers, so excited about the day. We showered and got ready and headed out. We spent the day exploring the town, eating the freshest seafood I’ve ever had in my life, playing on the cold beach, and I went for a run. I keep trying to remind myself that I do have a marathon coming up to run. Ummmm… just a little 26.2 miles to do. I have not run, in months. I did 6 miles tonight and it was so easy, it was stupid. Well, not stupid because it felt good. I think I could have kept going. I keep telling myself running is 90% mental, right? I may have just made that up in my head, but it makes me feel better. It makes me feel like I can run this marathon, without training for it because I am surviving you not being here, which is mentally hardest thing one can go through. I can do this marathon. All I’ll have to do, is think of you the entire way through and I will be fine. I think a lot of people are coming to San Diego, to cheer me on. The more the merrier. I will need all the screaming and FUCK YOU CANCER!!! that I can get.

Rita also texted me to say that a lot of people are wanting to do something for your death day. The 9th. She wanted to know if it was alright. I told her of course. People are wanting to let balloons go, which of course I am more than alright with. How about a black day with colorful balloons? Preferably purple balloons. I would like to fill the sky with them for you. I like that. I’m wearing black. Black is sad. Black is the color of grief. But black is also powerful, soulful and strong. For your death day, black fits. White made sense on the day we had your service. But not for the day that you died. There is nothing beautiful about the day you died. I’m going to wear black on this day, for the rest of my life. It is the only thing that feels right to me.

As for other things…. is it too much to say I think that everyone should just stop everything they are doing for the day? If I had my way, the entire world would go black. What did your Sparkly say to me a couple of weeks ago that made me laugh out loud? That maybe he should listen to me and just have a “Fuck it all day.” A day where you literally just do whatever you want and say fuck the rest of the “things” that you are supposed to be doing. Just for one day, blow it all off. Blow it all off because everyone deserves to have one day, where they are so grateful for all that they have, that nothing else matters. If I had you here, if I had you here and Liam and Quinn too, I would to this. I would listen to this and spend the day, totally lost in the world of the three of you. I would have kept you home from school. We would have went to do something extra special and fun. Rules and time-outs would not have existed. I would have told you 100 times how much I love you, how I was the luckiest mama in the world, how there is no place that was more important to me, than being with the 3 of you. It would have been the best day ever.

This is all I can do tonight, little one. Tomorrow is the 8th. I have to figure out how to wrap my head around what is to come. I love you so much. I’m so sorry. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

A city where the happy is too loud so let’s go away to the cold beach

Ronan. What is today? Sunday I think. The days are lost for me. The day you left me is almost here. May 9th. Your day of death. Not the day you “flew away to the heavens above,” not the day you “went to be with Jesus,” not the day you “went to a better place where you are an angel now,” not the day that you became “free,” not the day that “you went home.” I am not about to soften this blow with any of that bullshit. It’s fluff and fluff does not work for me. May 9th. Your day of death. The bloody hell worst day of my life. Period. I would actually like to take May 9th and make it a National holiday. I would like May 9th to be National F U Cancer day. I think that is appropriate since it is the day that cancer stole you. I am not taking your day and turning it into something fucking pretty, happy, light, and filled with angels from above. FUCK THAT SHIT. I am going to take the day that you left me and rename it and make it the name that it deserves. I think I will wear black all day long. I think I will try not to die from the pain of physically feeling, with every cell in my body, that you are not here. I remember our last moments together. They are a part of my soul now. They fill me with things like anger that I never knew existed. They fill me with things like a fire and a drive that I never knew I had. They make me want to take on the world because I know I can change this. I know we can change this. I know the power of our love can take the worst thing possible, and help others. But I am not doing this the nice way. I am not playing by the fluffy rules. There is nothing sweet and fluffy about having to dig your babies ashes out of his urn to place them in a plastic baggie, so you can take him on a trip with you. Anybody that says otherwise, can fuck off. Because it is simply not true. It’s bullshit and something no parent should ever have to experience. Especially not in this day and age when kids die from cancer, due to lack of funding alone. I don’t understand this. I will never understand this. I will never understand why this is acceptable. I will never understand why all of these kids are swept under the rug. I will never understand so I will spend the rest of my life, trying to fix this. This is what I am here to do, Ronan. I am not doing anything else.

I may have had a mini freak out last night in our hotel room. We landed in a big city. A big city is not where we need to be right now. I knew that planning this trip. I can do a city, all alone, and badass, any other month, but not this month. We went to dinner in this big city last night. It was all I could do to stay in the restaurant and not flip the fuck out. There were sooooo many happy people, everywhere. Happy and fancy. All dressed up. All happy and carefree. Nobody in that restaurant, had a dead almost 4-year-old. That I am sure of. “Their happy, is too loud.” I know what that feels like. I feel like that, all the time. It makes me sad and stings my eyes. Please bring him back. Please. I beg over and over in my head. I WILL DO ANYTHING. This never works, but I will continue to try for the rest of my life. I left the restaurant with Liam. We had a little foundation business to attend to. We had to get a picture of my fake training, for Palmer Cash, as they were my sponsor for the day. Thanks Palmer Cash. Everyone needs to check them out. They make the raddest tee shirts out there. Liam happily snapped my pics and laughed at my goofy posing/fake running. You see, I am not only doing this to make some money for your foundation, but I am also doing this to help us get through May. My life kind of depends on it. This was my idea as I knew we were going to need a way to get a laugh and some smiles on this trip. A light-hearted but heavy-hearted way to make some money to get Dr. Mosse’s trial funded, seemed like the way to go. So far, so good. I have had a blast and it is a healthy, good distraction.

We were all tired from our long day of traveling. We fell asleep pretty early. I ended up waking up, and having a mini freak out session/panic attack which caused me to slam two Ambien and send some insane text messages to your Mr. Sparkly Eyes. Well, not insane, but intense. I am always the most intense when I am the saddest/on the verge of jumping out of our 7 story hotel room. It was the Ambien that knocked me into a black coma of oblivion, not the soothing words of everything is going to be alright that I needed to hear. No words last night could have saved me. I know myself well enough to know when I am not capable of handling things on my own. Last night, when I woke up in that hotel room, only to find your daddy and brothers, and you were nowhere to be found.. well, what can I say? Nothing. What do you say to that? How can words comfort that? They can’t. They didn’t. I chose to escape instead. I am not perfect. You know how I hate our little frienemy. But on nights like last night, I don’t have a choice. The 7th floor jumping out of our hotel window, to splatter on the streets below, did not seem like a better option. Ambien won. Again, but not always. Not always is good enough for me, as of now.

I woke up this morning, all bright-eyed and bushy-tailed. No trace of black oblivion coma, existed. Up, showered, packed, Starbucks, hit the road, let’s get outta this big city. We met up with some friends. Good friends. Forever friends because of the unthinkable bond that we share. The one of a dead child, due to cancer. It was good to see them. So good. It actually felt good. It felt like home. I am so glad we are here. Getting out of Phoenix was the right thing to do. We watched their little boys’ Lacrosse game. God, you would have loved that game. It is so a sport you would have kicked ass at. Since you cannot be here, to kick ass at this sport, I now feel like I should do this for you. I am dreaming of a woman’s Lacrosse team as we speak. How awesome would that be? Your brothers want to play as well. The thought of that, put a smile on my face. I told them I would look into it once we returned home from our trip. They are both so excited. I am excited too. They are such good little boys. Almost too good. I need to rough them up a bit. I think Lacrosse is a good start.

After the Lacrosse game, we all went to lunch. I sat back with our friends and watched the way the 4 of our boys became fast friends, laughing and giggling together. 4 boys but there should have been 6. 6 would have been much better. 6 would have been absolutely perfect in this so-called imperfect world that does not exist if you have all of your kids, healthy and living. Healthy and living and there should be nothing to complain about, ever. Not the spilled milk, not the ” I don’t have enough time for myself because my kids keep me too busy,” not the messes made, not the arguments that are had, not the strong-willed child that throws a fit over everything, not the “I am too tired because my “sick,” child kept me up all night.” Please. I would give both of my arms for those problems. I would give my life for those problems. Those are not problems. Those are “you are so fucking lucky.” So shut up, suck it up, and be grateful. Stop making everything so much more complicated than it really is. Because at the end of the day, it’s not complicated at all. If it is, fix it. Are you laying with your child, as he takes his last breaths? If you are not and you are still complaining about this shit I would really like to punch you in the face. I cannot tolerate a life of complaining of nothingness. I don’t tolerate it. Which is why I may have such a big problem with being out in the real world now. Complainers are everywhere. I don’t do well with them.

If good days existed in my life anymore, today would have been one of them. We left our friends and headed off to our new destination. As we drove to our hotel, I spent the majority of the car ride, quite, with tears streaming down my face. Everything in our lives has changed. Even a 45 minute car ride. I hid my tears from everyone, as not to upset your brothers. I was so thankful to get out of the city. A cold, beachy destination seems to be much more fitting. A sleepy little town, where it seems as problems do not exist. I know this is not true. But due to the fucked up things that go on in my head, I have convinced myself that if we had live here, you would not have gotten cancer and died. Case in point, conversation with your daddy in the car.

Me: “I’ll bet nothing bad ever happens here.”

Your daddy: “That is not true. Bad things happen everywhere.”

Me: “Well, I’ll bet kids don’t get cancer and die here. I’ll bet if we would have lived here, Ronan would not have gotten cancer and died. It’s just too perfect.”

Your daddy a.k.a. the voice of reason and also the voice of you are clearly insane: “People get cancer everywhere, living here would not have changed Ronan getting cancer.”

I huffed and puffed. A small part of me thinks that if we had indeed lived in this small little sleepy town, that you would still be here. It’s my pretend world and I can live in it if I want to. I choose to live in it. Most of the time alone. Sometimes not. Either way, I don’t see myself leaving it anytime soon. It is the pieces of pretend that give me a break from our reality.

I chose to see you today. Running on the beach. Diving into the freezing ocean like I know you would have. Carrying your little red sand bucket. Giggling everywhere. Yelling, “Quinny! Mama! Quinn just threw sand at me!” Then throwing the sand back. I would have chased you like the wind today. I would have loved every second of cleaning you off. Throwing you into a warm bath where I would make sure you felt safe, clean, loved and warm. I would have put on your sweet little pajamas and tucked you into bed with me, where you belong. Nowhere else. Certainly not this nowhere that is here now. Certainly not this nowhere of crying myself to sleep because I am so sad I got to do none of those things with you today. I know you want to be here doing them, just as badly. I can feel it. I am sorry. Forever sorry.

I might have to end this now. I think it’s really long and I’m too sad, to continue on. Today was as good of a day, as it could have been. Your brothers happiness is proof of that. There happiness is how I judge good days now. I very rarely know happiness of my own. I’m o.k. with this. As long as I get to see it through them. I love you. I miss you. I hope you are safe. G’night baby doll.

xoxo

Ronan’s Day of LOVE

Ronan. I drive home. Alone. In the silence. With your blanket on my lap and your ashes around my neck. Blinded by my tears. I know what I am coming home to. An empty house. I pull into our driveway. Your bedroom window is the first thing I see. Your blinds are open. Everything is just the way you left it. Your room has not been touched. Your clothes are still in your drawers, your closet is filled with all the things you never even got to wear. The hand me downs from your brothers, in bins in your closet. You should be playing in your room. You are not. I hold my breath. Wishing for time to be reversed. I remember everything about this time last year. Everything from the text messages I sent, the phone conversations I had on the patio, to way you told me you loved me to the moon and back, how even though we were at the Ryan House, I did not think you were going to die. Nobody would be so cruel, to make us be apart, right? Who would do such a thing?

Somebody. Somebody did and now May is here. As of today, I only had 9 days left with you. Just 9 days. What would I have done differently, if I had known I only had 9 days to spend with you? I would have not slept. I would have told you over and over, how much I love you. I would have told you over and over, how proud I was to have you as my son. I would have told you over and over, how lucky I was to have you for the almost 4 years that I did. I would have told you how sorry I was. I would have kissed your lips, your fingers, your toes, a hundred thousand times. I would tell you how hard I will work for the rest of my life, to help others because that is one of the few things that is going to get me through this. My soul does not belong to myself anymore. I gave it up the second you left me. You took it with you. I don’t want it back. I know you are keeping it safe for me. I wish I would have had some poison to drink with me. The second you took your last breaths, I could have taken the poison and drank it too, so I could have died with you. So you wouldn’t have to be alone, without me. Like Romeo and Juliet. Only we loved each other so much more than they did. I’m sorry I cannot be with you. It is so wrong, Ronan. So very wrong.

I need you. I cannot do May. I said those words tonight. I know you heard them. I know you saw me. I’m sorry if you saw the pain in my eyes, the hot tears that ran down my cheeks, the way I said, “No, no, no,” over and over again as I clung to the one thing that makes me feel closest to you. Please make May go away. Please bring him back. Please. I cannot do May.

But May is here. There is no stopping it. I would have sent out your birthday party invitations now. We would have had an awesome party. Anything you wanted. I’m sure it would have been Star Wars related. I wonder sometimes if you would have ever outgrown your Star Wars phase. Now, I’ll never get to know because to me, you’ll love Star Wars forever. May 12, you would have been 5. That seems so big. You would have been such an amazing little 5-year-old. I’m still going to plan your party, even though you are not here. I’m calling May 12, 2012 Ronan’s Day of Love. We are doing something very special down at Phoenix Children’s Hospital to make some very sick sweet kids, smile. It’s exactly the way you would have wanted it to be. It’s going to be a very special day down there all because of you. I cannot be there. Not this year. It’s too much. I’ve got our lovely little board members handling it all as well as my intern Rissy and your Liz. They will do a great job.

So, Ronan’s Day of Love. I’ve come up with a few ideas. I think we should all wear purple for Ronan’s Birthday. It’s such a great color. I really loved all of the balloons for his birthday last year. Purple was his favorite color so if you all want to buy purple balloons and let them go, that would be so sweet. Any color would be fine, but purple was his favorite. I loved seeing all the pictures from it too, so if you want to snap the pics and email them to me, that would be nice to see. Any donations to his foundation are always welcome, of course. We are getting pretty close to getting Dr. Mosse’s trial funded. This Marathon of Madness has brought in some good money and we are so thankful for all the support. I’m not done planning Ronan’s party but I’m getting tired. One more thing that I can think of that I would like you to do is grab your child, children, sister, brother, friend, aunt, uncle,…. whomever you are closet to and say these words over and over to them…,”I am so lucky to have you.” I used to say those words over and over to Ronan all the time. And now I’m not so lucky, because he is not here for me to hold and tell him how lucky I was. I always knew. Everyday with that child was such a gift. A gift that I will never understand why it had to be taken away. I will never accept all that he went through and his death. I will carry that anger and pain with me for the rest of my life. It’s mine to carry. It’s a part of Ronan. I’m not letting that go.

But I have to go now. It’s been 2 weeks without Ambien. After tonight, I had to take one. Sometimes the screaming in my head and the tears just won’t stop. Somethings I have to say enough. I’ll be surprised if this post even made sense. I do some weeeeiiiirrddd shit on Ambien. Thank god I have no desire to go and drive a car. Tent City, here I come! Bucket list Rita!!!

G’nite Ro baby. I love you to the moon and back. You are my best friend. You were the best thing that has ever been mine. I miss you. I love you. I hope you are safe.

xoxo

A painfully gracefully clumsily beautiful existence

Ronan. I had a rough sleep last night. I think there was a lot of tossing/turning/punching pillows involved. It was 1:45 a.m. when I pretty much said FUCKTHISSHIT and popped an Ambien. Hate it. But sometimes the silence of nothingness is needed. More so than not lately. Nights have been more brutal than they normally are lately. Nights are when the cries from you to me and me to you, scream the loudest. Nights are never quiet.

I got up today, running on the little sleep I had gotten, but I had a lot to do. Too much to do so I went into tunnel vision to get everything done. Foundation things. I had a meeting at Phoenix Children’s Hospital that I needed to prep for too. Prepping came with basically giving myself a pep talk and telling myself how I would be brave today and talk about you, without sobbing like a baby. Prepping for today came with a lot of,”You can do this. For him. He would love this.” Rita met me down at PCH. I was waiting in the lobby for her, busying myself with doing things like cleaning out my purse. Busying myself with a lot of things to distract myself from crying. I don’t have a problem with being at PCH. I’m down there a lot still. I had a problem with the reason I was down there today. I didn’t want to be there, without you, asking for permission to do something for your birthday, and you are not even here to celebrate it. I wanted to be down there, with you holding my hand, doing something for your birthday and celebrating the fact that you were here and we together, wanting to do something nice at PCH because we were so lucky to still have you. I fought back my tears today and bravely did this without you. I sat in a conference room with Rita and clumsily/gracefully talked about your upcoming birthday and what it is, we would like to do, to honor you. I am used to hearing the word no a lot now. I am used to getting met by skeptical glances and it usually involves a… “Well if you want to do this, you have to check off this box and this box and this box, to have it done.” I am used to having to work/fight for everything in life. Today, none of that existed. I was met with a big fat, “We love this idea! We love everything about it. We will do whatever it is, you like. How can we help/what can we do/how would you like to see this idea, happen all the time in Ronan’s honor!” I was quite simply shocked. I think Rita almost fell over in her chair. This was not what either of us, was expecting. We left there stunned but smiling. We went for tacos afterwords and talked where we talked about your birthday and how we are going to execute the ideas that we have. We are going to make it a very special day for a lot of kids. I know it would make you smile and so happy.

After I left Rita, I drove to your brothers baseball game. I was feeling alright. I arrived to the game and just as I was sitting there, thinking about an email I was supposed to send today, in regards to an event I am trying to pull off for you in September, a little text message popped up on my phone. A little text message from the person I was going to email, but did not. I read it, sat with it, and the tears started pouring. I don’t want to go into details about what the text message said as it’s not important. I’ll sum it up with a little Taylor Swift lyric instead…one of my favorites. “Don’t you worry your pretty little mind, people throw rocks at things that shine.” I was crying for about 10 different reasons during that moment. 1) Because baseball games are hard in general. 2) Because I miss you. 3) Because this little text messaging person, blows my mind 4) Because I am so thankful that truly good people in the world, like her, exist 5) Because the stars are aligning, right before my very eyes 6) Because just when I start to doubt myself, this person always seems to know it and reminds me that she believes in me and you 7) Because I am so about letting things just come about/not push them and this was a huge reminder/sign to me to continue to do things, this way. There are a few more reasons for my tears, but I don’t want to go into them. Mostly it was just a huge fat thank you, Ronan. For reminding me that you are still here, working away during the times when I feel the most defeated. Or tired. I told your Sparkly eyes that I was just freaking tired of everything. I was quickly met with a, “So what? That’s bullshit. You’re tired? That means nothing.” He is one of the few people who I allow to slap me in the face and I don’t become defensive or feel offended. I am able to step back, assess the situation and say, “You are right. I am acting like an asshole and I need to knock this shit off.” I am learning to let myself take little breaks here and there, but I will never give up on you. I will work as hard as I can, to make some things in this mad world, right.

You know what else you are doing for me? Or should I say, this grief is doing for me? It’s making my heart bigger than ever. I did not know that was even possible, but it is. There are things now that I just cannot look away from. I want to save/help everybody. It’s helping others, that is saving me. Dr. JoRo told me this after a few times of seeing her. She talked about how my heart, would eventually start to turn outward again. I remember being in a fog, listening to her words, but not really understanding what she was saying. My heart would turn outward and grow bigger? Not possible. It is black, broken and shattered into a million pieces. I am starting to understand what she has told me, from the beginning. I’ve always believed her, but I think until now, I wasn’t truly ready to hear what it is, she was telling me. She is so freaking humble. I talked to her today. She is still on her trip and just found out she is getting some huge/really big deal award for being what I think should be called, “The Most Amazing Woman Alive on the Planet Award.” I listened to her talk about it like it was not really a big deal, even though it is. She would never come out and say that because that is just how she rolls. I tried to tell her it was a big deal, that she deserves this for everything she is doing. I was met with a, “Maya. That’s the thing. I’m not really doing anything except just being with you. Just holding your hand as you do this. All I am doing is sitting with you while you feel this, while you go through this, while you find your way.” I wiped the tears off of my cheeks. I told her that what she was doing, was walking through this with me in a way that nobody had done before. By truly listening. By speaking for me when I cannot, even if it’s not saying anything at all. By NEVER judging. By NEVER pushing. By NEVER expecting. By NEVER telling me I am doing this wrong. By NEVER lessening my pain. By never trying to numb my pain by shoving 10 different pills down my throat. By never saying, “Oh, I lost a child too, so I TOTALLY get it. By never telling me it’s time to get over this/move on. By never comparing her pain to mine. By NEVER using the words, “Well at least you have these things/people to get you through this. By never using the words, “You should be grateful for the things you do have.” By never telling me this gets easier. By never giving me false hope. By being brutally honest about how fucking awful this all is and she cannot fix it. She cannot fix it, but she will forever be here to watch me as I do, as I am the only one that can. And finally, by believing and me and trusting me, even when I do not believe or trust in myself. She always does. I know she always will too. She is one of my biggest reasons for continuing to fight as hard as I do. When I grow up, I want to be just like her;) She is beyond inspiring, Ronan. She reminds me a lot of you. She reminds me a lot of me, too. So much some days that I can see my pain, in her eyes. But the thing with her is it never hurts to look at her eyes, full of all of my pain. When I look into her eyes, I see a quiet strength that makes me feel the most at ease. It’s like I can breathe for a bit.

Guess what I did tonight? I did not get to hike today due to my busy day of getting shit done. I was quietly panicking in my head about it. I took Liam out tonight to grab a bag of ice for your daddy. It was dark. It was late. I drove the two of us, to our mountain. “Liam. I didn’t get to hike today, buddy. You want to go with me really fast?” I was met with an, “Ok mom. But I don’t have shoes.” I quickly told him no problem, that we could just go barefoot. He was so excited. “Good thing I have tough feet, mom.” Tears sprung to my eyes. “Yeah buddy. Good thing. I do too, so we will be alright.” We hiked, barefoot, in the dark together. He talked the entire time. We didn’t go to the top but that was not the point. We went as far as we could with bare feet/no flashlight like we didn’t have a care in the world. We bonded. We laughed. We missed you. It was a very sweet hike with a very sweet boy. I bawled like a baby over it and the fact that we were simply doing that crazy thing, because you are dead. If you were here, I would have never been on a mountain, holding Liam’s hand with bare feet and a broken heart. But I was. And I am. And I will continue to be for the rest of my life. This is just the way it is now. This is just the way it will always be. This grief/pain will never leave. I can’t have you anymore so this is what I am left with. A beautifully, painful life. I am noticing that the amount of beauty that I see in the world is endless but so is the amount of pain. They both seem to go hand in hand, everywhere I look. They are never without each other. It is as if they are best friends/worst enemies. You cannot have one, without the other. I wonder if other people notice this or if it is just a bereaved parent thing. I think my friend Rita sees it all the time, as well. Maybe this is one of the reasons I like her so much. That and she is funny as a mo fo. I cannot contain laugher/her snarky ways when I am around her, kill me. Like in an I almost pee my pants kind of way. Laughter truly is the best medicine. I need a lot of it. She is good at providing it. Plus, sometimes she makes me feel like I am being funny and making her laugh, too. So sometimes I feel like it’s just not a one way street;) YAY ME! I can still be kind of funny, when it comes out naturally. I only do this with the people I feel most comfortable around. It’s a weird introvert characteristic of mine.

Alright babydoll. Turing in for the night. Ambien I hate you but I have to sleep is here. G’nite baby doll. G’nite sweet friends. I miss you, Ro. I hope you are safe. I love you.

xoxo

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A barefoot hike and a spicy little dragon

Ronan. Every single morning I wake up, the first thing I do is miss you. I will never be the mama that wakes up with a fresh set of eyes. My eyes are always sad, mostly bloodshot and my heart is always heavy. Every single morning, I have to make a choice to get out of bed. It’s a choice because a lot of days, I do not want to wake up at all. After a very heavily induced Ambien coma sleep last night (yeah, I totally went there), I woke up this morning saying all kinds of shit in my head. You HAVE to get up today. You HAVE to make 2 decisions today. You HAVE to check 2 things off of your list. You have to start making some decisions about Ronan’s death day/birthday that is approaching. I get up. I make my way to your brothers room the same way I do every morning. I walk past your room. My stomach drops that you are not in there. Your bed is neatly made. I go into Liam and Quinn’s bedroom. I open their blinds. “Good morning, boys! Rise and shine!” I turn on their shower. I text back and forth with Rita. We make some plans for tonight, as a family. YAY! I get to see her little dragon! I pack your brothers lunches and drop them off at school. “Bye boys! Have the best day! Try your hardest! Be nice! Be kind! Help others! But don’t take anyone’s crap! I love you!”

I decide to make a run to Target for a couple of things and one of them includes a couple of little trucks for my little dragon friend of mine. I get so excited about seeing him. I love his little raspy voice, the way he says my name over and over, just to say it, and the way I get to hear him call out to Rita, “Mama,” because that is what he calls her. I am a sucker for that mama word. I am a sucker for the way he sometimes talks about himself in 3rd person. I am a sucker for this little dragon friend of mine who makes me want another baby/child so freaking badly. I would actually just like to take him home, but I don’t his two totally amazeballs parents, would be o.k. this. I’ll just continue to take him in the doses I get him in, which totally makes my day.

It’s while browsing through the toy aisle at Target that I of course, walk past the Star Wars toys. I can’t resist. My heart flip-flops back and forth. New guys! New helmet guys that Ronan did not have, but totally would have wanted. I pick them up. I put them back. I almost walk away. I can’t. I turn around and grab the new guys and throw them in my cart. I’m buying them for Ronan. I don’t care if he is not here to play with them. I run home, look at my get two fucking things done list, I sit down and do them. Good job, you. I look around at our house. It’s so freaking clean. Everything is put away. There is not even laundry to do or windows to clean from your little pudgy, dirty hands smearing stuff everywhere. This is FUCKING BULLSHIT. I throw on my workout clothes. Well, since there is no maybe baby, I guess I can go beat myself up a bit. I drive to our mountain.

I listen to Dr. JoRo’s voice in my head telling me, no headphones… just try to be quiet. To be mindful. I run up our mountain. Except instead of taking our usual route when I get to the top, I turn the corner instead. I slip off my shoes and continue up, down, around, and around the unfamiliar trails. It’s hot. Nobody is around at all. My heaven. Inferno hiking season is almost back. My feet don’t really feel any pain. I run for a long time, barefoot. I stop after about an hour and a half of hiking up, up and up. I find a nice spot, throw my things down, sit down on a big, black rock. I close my eyes for a long time and think about you. I snap a picture to send to Rita. She responds back that the cactus I’m sitting in front of, looks like it flipping off cancer. I laugh. It totally does.

I head back down the mountain, keeping my shoes off for half of the way. I stop to put them on and start to cry. A few ideas trickle into my head about what it is, that I would like to ask people to do for your death day. I’ve decided that’s what I’m calling it. Not your passing day (that sounds too sweet) not your anniversary (i hate that too) I guess I could call it your Fuckiversary. That has a nice ring to it as well. You deathday/fucking bullshit Fuckiversary it is. I know a lot of people will want to do something. I’m creating a little list in my head of what it is, I would like to see done. Up until today, I have not been able to even think about it without getting physically ill and drawing a total blank. It was only today, during my hike of numb pain, that ideas started to spin around. I’ll write about them later, not tonight. I’m tired and I want to be able to let this all come about, naturally, and I don’t feel like I’ve gotten it all figured out yet.

My little hike lasted 3 hours. It was nice to be outside, connecting with nature in a physical way. I get in a funk when I don’t do things like that. I always feel close to you and I tend to feel the closest to you, on that little mountain of ours. I left your bracelets all over the same tree below, like I do every single time I am there. I always wonder who finds them. I always wonder if they will google your name and learn about the most beautiful little boy who ever lived. I hope they do.

I went to your favorite restaurant tonight, Chelsea’s Kitchen, with that little Dragon friend of mine, his parents, your daddy and brothers. I felt like you were there with us. Especially as I watched Little Dragon, jump into the water fountain outside of the restaurant with his shoes, socks and pants on. If you were there, you totally would have done it with him and I would have laughed. I laughed and I almost heard your giggles in the distance. I laughed even harder when that Little Dragon, grabbed someone’s shoe that was just sitting near a rock by the patio (seriously who takes their shoes off, at a restaurant?? if you ask me, they were just begging to be thrown into the water by a very curious 4/maybe 5 year old) and threw it in the fountain/pond. Such a little rebel Ronan move. Your brothers thought it was hilarious. Rita, apologized profusely, but secretly /not so secretly to me, thought it was funny. I looked up at the sky and blew you a kiss. It was a great ending to an almost good day.

I love you to the moon and back my very spicy, little monkey boy. I’m so sorry for all of this. I miss you. I love you. I hope you are safe.

xoxo

In the words of Eddie Vedder…. I’m still alive. But do I deserve to be? Is that the question? If so, who answers…. who answers??

 

 

Ronan. I feel like I have run a marathon. I am emotionally beat, but my mind refuses to be still. I need you here. I need to tuck you in, to kiss you goodnight, to tell you I love you and to hear you tell me you love me back. I miss you so much that sometimes I think this pain might really kill me. I’m not that lucky because it never does. I just continue to feel like I am being stabbed over and over again. It is an endless, vicious cycle of pain and misery. It hurts to even breathe. But I’ve been productive. I spent the weekend, throwing myself into work for your foundation. I have so many ideas. I have come up with a new dream and vision. It’s HUGE. I think it’s slowly been in the back of my mind but it just become clear to me a few days ago, what it is that I think needs to be done. Not very many people know about it. I’ve only told a few as I think I need to keep this one to myself for a while, until I can get a handle on how this plan of mine, can actually become a reality. It could change so many things. It could help so many people. It’s just one of my dreams for this disease, just one of my many ideas. I’ve obsessed over it for days now. But it’s like slowly putting a puzzle into place. The pieces have to fit just right and it is not something that can be rushed. It has to be done just right, so eventually all the pieces will fit into place. It’s time to start working on the pieces baby. One by one.

So, I may be out of control with our little Taco place. I spent 3 days in a row there. 1 lunch, 1 dinner, and one very productive foundation work day. Turns out, you can hijack the wi-fi from the big restaurant across the street. SCORE for Team Ronan! I’m going to have to start up a Taco/Mexican Coke fund. I spent last night there with your fairy RoMo and Margarita. It was kind of a last-minute thing from your RoMo as she was like, “Hey, I’m thinking of changing my flight to stay an extra day!” My response was please do so, that way we can go and have more chips and salsa. So we did and I hijacked Margarita to come along with me. BEST NIGHT EVER. Is it bad, that my best nights ever now revolve around everything you?? Because to me, it means the world to me the way I get to sit around and throw out these ideas to people who care so much that they will give up their Saturday night to figure out what it is that we need to do to make these really, really great things happen?? Do you know what I was told last night?? That the word no, was not acceptable. That there is always a way to work around things to make things happen. I LOVE that. I need less no’s and more let’s find a way to fucking do this! Because so much needs to be done in a big way for pediatric cancer, to change things. Last night was so inspiring, so powerful, so moving. At one point, your RoMo just looked at me and goes, “I can’t explain this, Maya, because there is no explaining it. Ronan is changing everything. There is a shift and a movement happening. No other “sick,” child has had an effect on people like this.” I just quietly listened and told her I knew. We all know that this is beyond something bigger than us. I know that this is all due to you, your beauty our love, and your wild and free ways. It is too beautiful to try to explain with words. Let’s explain them with the huge things we are going to do in this world instead. We’ve got a pretty kick ass list of names that we are going to try to recruit to help us. It’s time for this world of ignoring childhood cancer, to change. Enough is enough. You should not have died. Let’s try to help other little one’s so that one day, they won’t have to either. I don’t think that’s too big of a job, do you? I know you don’t, otherwise you would not be pushing me forward to do this.

Today, I went back to our little Taco Shop with my imaginary board member that does not exist. We sat, went over the huge to do list. She gave up her Sunday, for me, for you, for us. What do I even say to that? Nothing. Because she does not want the huge fuss made about her, that I want to make. She just wants to be behind the scenes, helping us out in her quiet Wizard of Oz way. She is the freaking Wizard of Oz in a way that leaves me speechless. Speechless but tearful and thankful. Thanks, you know who you freaking are. Thanks for everything but most of all for looking at me today and going, “We can do this. This is easy.” Thanks for believing in me and Ro. Thanks for being just a kind-hearted, secret badass chick in general. You are quite simply, are RoMazing:) Oh, and little LoRo…. my other little amazing dolly who has worked so hard on the RoLove that she is creating….. I need to tell you thank you tonight. For not being a normal, 17-year-old girl. For being different in such a way that you have set the bar so high, for other girls your age. Your heart and the love that you have for Ronan and all these other cancer babes, is so beautiful and you are such a gem. Thank you for all of your hard work and love. I’m so thankful for you.

Alright, my spicy little monkey. It’s kind of late. My eyes are burning and I think I have to try to sleep. Not just for a few hours. Please. I just want some normal sleep. Not sleep which now seems to come in the form of fall asleep for a couple of hours and wake up to Ronan is dead. Ronan is gone. Nothing in the world is right so screaming voices take over in my head, instead. I’m sleeping in your bed tonight. Maybe this will help. It seemed to be working for a while. I hope it will work, tonight. I love you. I’m sorry. I miss you so much. I hope you are safe. G’night baby doll.

You and Ben. Ben and You.

Ronan. I have had so much go on the past couple of days but all I can think about is Ben died today. Those are the words that jolted me out of my Ambien induced coma last night at 12:11 a.m. I was asleep, in Quinn’s bed and you know once I take my Ambien, World War II could be going on in our house and I wouldn’t know it. Last night, I was ripped from my sleep and straight up in my bed, not knowing why. I reached for my phone because something just felt not right. That’s when I read the words, “Ben died today.” My stomach dropped. I immediately sent your Mr. Sparkly Eyes a text that simply said, Ben died. Fuck. Fuc (which is our code word for Fuck You Cancer) I got up, I kind of remember going into our bedroom and just saying out loud to your Daddy, “Ben died. FUCK!” I don’t remember what happened next except my face was very wet. I woke up in the morning, back in Quinn’s bed praying that I had only dreamed of Ben dying. I grabbed my phone and read the words, once again. No. No. No. No. Not Ben. I got up, showered, got your brothers up as we were running late. I was in the middle of making lunches. Your brothers came out to grab some breakfast. Your Quinny was complaining about the shorts your daddy had picked out for him to wear to school. They were just normal, corduroy shorts and I told him how handsome he looked. He started to say how he didn’t want to wear them, how it wasn’t fair. I stopped in the middle of making his sandwich, looked at him and I said, “Ben died. Ben died and you are going to complain about the shorts you are wearing? You are not allowed to do that.” Was this too harsh for an 8-year-old? I don’t fucking think so. It’s real life. It’s real life where I’m sorry but we don’t get to complain about things that don’t fucking matter anymore. There are bigger problems in life. I refuse to let your brothers, forget that. I refuse to let them grow up in a world where they are ungrateful that they are alive and get to wear stupid shorts that look nice when all they want to do is wear Nike Basketball shorts. It’s not happening when you and Ben would have given anything to wear nice corduroy shorts.

So Ro. I knew that day I saw Ben at America’s Taco Shop that it was really you that I was seeing. It was not just a coincidence. It was a very well orchestrated plan thought out by you. I knew that day, that Ben probably was not going to be around much longer. I knew that this was your way of telling me this, but it was also your way of telling me that you were going to take care of him. I knew this then, but I know this now for a fact. I have not told his mama this. I talked to her today. I wanted to tell her this, but I could not find the words. I was the one, crying on the end of the phone while I listened to her tell me that she was fine. How she was cleaning the house, but she was fine. What do you say to that? I did the only thing I know how to do. I simply said, “Barb. You are not fine. You are in shock. You are having a physical reaction to Ben being gone and your mind and your body are trying to protect you.” She said she wasn’t sure, that she really felt fine. The tears slid down my cheeks. “O.k.,” I said. “Please just know that I am here when the shock wears off. I’m much further down this road, so I kind of get it. Not entirely, but kind of.” All I wanted to do was reach through the phone and wrap my arms around her. All I wanted to do was to bring Ben back so she wouldn’t have to be fine. I felt so useless and so helpless. I tried to think back to what happened right after I lost you. I don’t remember much but I think I wrote to you. I’m sure there were so many people out there going, “Has she LOST her mind?!! Who writes a blog post, not even 24 hours after their child dies?!!!” I guess that was my version of being fine. Everybody deals with things differently. There is no right answer. You know what else, makes me love Ben’s mom even more? The fact that when she did do her update (I’m assuming it was her) that she simply titled it, “Ben died yesterday.” That was very Maya like if I do say so myself. Regardless if they are religious or not, it was so fucking refreshing not to read, “HALLELUJAH! Ben is with our Lord Jesus Christ! We are so happy!” The next caring bridge that I have to read, that says something like that, I’m going to punch my fucking computer screen. I don’t care how much you believe in God…. stop fucking lying. No parent is happy and rejoicing that their child is dead. Let’s call a spade and fucking spade. I don’t care if God is your fucking BFF. The fact of the matter is your child is gone and let’s just be honest for .2 seconds and be honest about it like Ben’s mom. Ben died. That says enough. That says everything and more. It is enough. Just let it be enough and nobody needs to scream Hallelujah about it.

I know I worry about you being safe, Ronan. But I don’t worry about Ben, because I know he is with you. Does that make sense? I may not know that you are safe, but I know you are now watching after your little buddy and I know that you two are together and so I know you have a little friend to pal around with. I pictured you two, today playing with each other and running all around. I actually pictured you both on this earth and how you would have been great friends. You don’t get to be here together so you being somewhere else, will have to do. It was easy for me to picture the two of you, together which is weird because we didn’t even know Ben that well. We only had a few interactions with him but they were always one’s that I could not forget. I never could get his little mischievous smile, out of my mind. It was so much like yours.

Words failed me today with Ben’s mom. There are no words that could ever be good enough. I’m so sorry was all I could really do. If I had to tell her some things, it would be this.

This should not have happened. It should not have and you don’t ever have to be o.k. with this. You won’t ever, “get better,” or get over this. And you should not. He was your Ben. Your one and only sweet Ben and this just proves that life is not fucking fair. Nobody will ever have a Ben like yours. This is o.k. You are the only one that was special enough to have him. People will try to understand but they won’t. This is o.k. too. He is your best kept little secret. Your love is your best kept little secret. The best kept little secret that nobody can take away from you because it lives closest to your heart and your heart, ONLY. Nobody else’s. Ben knows how much you loved him. Ben knows you would have traded your life for his in an instant but it was not your choice. You will learn to accept this and let his love, guide you for the rest of your life. Don’t question your heart. Ever. With anything you do anymore. Even if that just means deciding what to cook for dinner. Everything will eventually mean so much more than it did before because Ben will be behind everything you do. Not that he wasn’t already before, but now his light will become that much stronger even on your darkest of days when you don’t want to get out of bed. Don’t fight this. Stay in bed and have lots of dark days. He is worth every single tear. He is worth your shattered, broken heart. He will help you put it back together when it is time. There is no time frame for this. Don’t listen when you hear this gets easier as time goes on. Time is irrelevant. Time means nothing. Time has stopped. You were his teacher for an amount of time, that was cut way too short. Let him be your teacher now. I know he has so much he wants to teach you. I know he has so much he is going to teach you. He will keep you safe. I promise. I’m so sorry. I’m so sorry and I wish I could bring him back. I can’t so Ro will watch over him. I don’t believe in much these days, but I believe in this. I don’t just believe in this, I know this. I love you. I love Ben. I love the love you two have for one another. Not had. HAVE. You will always have that. Always.

Alright Ro baby. It’s been a long day full of too many tears and homemade potato latkes. I peeled the fuck out of the potatoes today while I cried for you, me, our family, Ben, and Ben’s family. I made some pretty kick ass potato latkes. You would have loved them. I’m sorry that cancer is an asshole, therefore you couldn’t be here to eat them. I’m sorry. I’m sad. I love you and I hope you are safe. Thanks for taking good care of Ben. I love you both to the moon and back. Sweet dreams, baby doll.

xoxo

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

xoxo

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