Life’s not about waiting for the storm to pass…It’s about learning to dance in the rain while jumping in some mother fucking mud puddles.

Ronan. About 3 weeks ago, Dr. JoRo said to me, “Hey, do you want to hike Mt. Wilson with me, on April 26th?” I didn’t even look at my calendar. I just gave her an, “Absolutely.” I didn’t even know what Mt. Wilson was, except for it was in Sedona and I knew it would be an adventure. I could not have imagined in my wildest dreams, the adventure it would turn out to be. I woke up this morning at 4:30 a.m. I quietly threw together my things and headed out the door for the drive up to Sedona. A drive that I have come to love so much. It started to rain on my drive up. Dr. Jo said it might rain today. “That would be the best!” I said to her. I arrived to Jo’s around 7 a.m. She was all ready to go and we called her neighbors to see if they were ready to meet us. They were, so we all piled in their truck and headed out for our little hike. I had on shorts, a tank top, my purple coat and your backpack full of water and your GiGi. This is Arizona, it’s April, and it’s been hot. We don’t really get rain in April, so my outfit seemed appropriate.

We quickly arrived at Mt. Wilson. At 7,122 feet, it is the highest of all the mountains in Sedona. It is breathtakingly beautiful. We started our hike and for the first 10 minutes, I was warm. I was a little bummed out that the sun was starting to peak through. I unzipped my jacket and went, “Here comes the mother fucking sun. Again.” I was really needing a break from the inferno today. Up we went. Dr. Jo climbed a tree to hang some of your bracelets on it. I started snapping some great pictures of her. She is such a little spicy monkey, like you. On her way down, snap went the branch due to it being all rotted and dead. She fell, but caught herself just before landing right on top of a cactus. We starting laughing and the first war wounds of the day, were earned. I noticed the clouds rolling in and the rain that started to trickle. A smile spread across my face. We continued on. Within minutes, the sky had turned and we were getting rained on like I had never seen rain before on an April Arizona day. I was snapping pictures, left and right. We both kept stopping to take in the views. Soon the thunder and lighting started up. “It’s Ronan,” I said. “He’s mad.” Pebbles started hitting us in the face. “HOLY HAIL!” I cried out. “I told you he was mad! Ouch!” It was hailing on us, hitting us both in the face, and we were laughing. The wind started howling and whipping around us. We still had a couple of hours to go up the mountain. The rain did not let up. At all. We were sopping wet from head to toe, but we still continued on, determined to make it to the top.

I felt like we were transformed to a bunch of different worlds today. I said to Jo, “I feel like we are walking to the end of the earth.” She agreed. I am quite certain, that it was you today, Ronan, whom was in charge of this weather. You know how the dreary, rainy weather is one of my favorite things in the world. You know how much I miss it. You know how much I miss you. I think this was your way of crying for me and letting me cry for you. With the millions of tears that poured down on me today. The millions of tears that will never add up to all the tears that I’ve cried since you’ve been gone. Today, the weather was your tears and my tears, combined. Together, the sky and the heavens above, wept for us.

Dr. JoRo summed up our hike like this:

Ecopsychology. Bear. Gigantic falling trees. Hail. Raining four straight hours. 40mph wind. Sloshy mud. Lightning. Tree climbing. 17 miles, and 7000+ feet. 35 degrees. Muddy falls. Drenched head to toe. Never done anything quite like this. It was good to do for a very special little boy who is loved and MISSed. Pilgrimages of remembrance don’t get much better than this. — with Maya Thompson.

It was all of those things and more. So much more than I could have ever imagined. Once we got to the top, it was so cold that we could see our breath. We were not prepared with any water proof clothes, our lips were blue, and pretty much every body part was numb. I could not feel my legs or hands. I think I may have thought to myself, “There is no way we are going to make it down this mountain. They are going to have to send a search party.” We stayed at the top but not for long. Between the rain that was coming down and the wind, it was almost unbearable. I started to lead the way down the mountain. I stayed with Dr. Jo and her neighbors for a bit but I needed to run. I felt myself getting angry and sad and needed to take out my energy on something. Soon, I started running and didn’t look back. I ran as fast as my feet would carry me. I jumped over broken down tree stumps, over boulders, through sticker bushes, slipped all over the place in the red mud that felt like quicksand on my feet. It just continued to pour down rain and did not let up at all. At one point, I had to pee so badly, but it was hailing again. “Oh fuck it,” I said. Down came the shorts and my bare ass was pelted by the hail coming down. I busted out laughing. Today may have been one of the craziest things I’ve ever done in my life, besides skydiving. Bare ass in the air, covered in mud, drenched from head to toe… so totally badass. I felt like I was on some adventure extreme sports show, roughing it in nature. I would have totally beaten all the other contestants today, Ronan…if it had been a competition. I would have beaten them all, done anything and everything, to get you back. That’s how I felt going up that mountain today. Do not stop. Keep going. You are not cold. You are not in pain. You are alive. So you don’t get to have any excuses. You don’t get to wuss out. You don’t get to give up or turn around. You can do this. Ronan would give anything to be here, living life, growing up, and doing these things. He doesn’t get to, so you have to do them, for him. I continued sprinting. I had a baggie of your ashes with me. I haven’t ever spread them out anywhere before, besides the lockets that I wear and the one I gave to Fernanda. I carry your ashes with me, a lot of places, but never leave them anywhere. I wasn’t sure if I was going to or not today. It just didn’t feel right. At one point, I was running so hard and so fast that my legs felt as if they were on fire. I turned a corner and it was out of nowhere, the most beautiful field of the brightest yellow wildflowers appeared. They were so bright, that it was almost blinding. I stopped dead in my tracks. Yellow. Bright yellow. Scatter them here, on top of these flowers. I did. I know you know why. It was the perfect spot. I kissed the top of the flowers all covered with some of your ashes. Just as I did this, the rain started pouring down so hard that I could hardly see. I started to cry. I told you how sorry I was. How much I love you. But mostly how sorry I was. How sorry I will be for the rest of my life. You should be here. I should not. I’ll never understand why this was you and not me. You did not deserve any of this, Ronan. I would have given anything, for this to be have been me. Anything and everything. Fate is cruel. Fate is not kind. Fate is a fucking asshole. Especially when it comes in the form of sweet, innocent babes getting cancer. And then dying from it. Fate can go and get fucked.

I ran as fast as I could down the mountain. I had painted mud war stripes on my face. I live in a war, everyday of my life. They were necessary to wear today. They made me giggle. I purposely jumped in every single huge mud puddle that came my way. I did this for all of you, of course. I laughed out loud. I pictured you watching me and what a sight I’ll bet it was. My purple jacket, against the red contrast of the red rocks, flying down Mt. Wilson today in the pouring rain, laughing, crying, screaming… but most of all feeling something other than the fucking pain I feel 24 hours a day. Feeling something other than feeling dead. Today, I felt alive and it felt alright. And I don’t need any kind of bullshit medication to make me feel this way, Ronan. You know what I need? Exactly what I’ve been doing. Nature. Exercise. Mindfulness. Pain. Honesty. Love. I will survive this, thanks to those things and nothing else. Nothing else that comes in the form of a pill anyway. A pill for grief is absurd. A pill for grief is madness. A pill for grief will only create a bigger problem. There is a simple solution, really. It’s called how about feeling, what you feel, when you feel it, and facing it head on. That’s what a brave person would do. That is what a strong person would do. Those are the two things, you kept saying over and over to me in my head today. I heard you about 50 different times. “Mama. You have to be brave and strong, because I was brave and strong.” I know, Ronan. I know. I hear this a lot from you. I’m listening.

So, today. Today was one of the best days of my life that I have had, since losing you. I learned that I am capable of so much, Ronan. I can do all of this and I know this due to having days like today, which don’t happen very often. I went back to Jo’s after our hike. We showered, ate, played some ridiculous card game, laughed so hard that at one point, her son, Josh, fell off of a chair. I would not be doing alright without her, Ronan. She is such a huge factor in this process for me. She has this grief thing figured out and the funny thing is, it really has nothing to do with science. It has nothing to do with medication. It has everything to do with love, compassion, empathy, pain, laughter, passion, and just letting one find their own way. Whatever that may be.  Without the judgements.

It’s super late. I’m so tired from today. No Ambien for about a week now. Good girl. I hate that shit. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Dear 11 Fucking Months. I think I hate you.

Ronan. This solitude thing… it’s alright. It’s necessary. I’m doing it as much as possible. As much as I can for still being among the living, while really being dead. That’s what I feel like lately. It’s o.k. It’s part of this process for me. For as much as I’m checking out, I am still checking in when I can with the people who love me the most. With the people who I love the most too. I’ve been spending most of the days, solo. Hiking for many hours. Trying to be mindful of the way I’m feeling and not trying to distract with busy, busy things. There is a time for that. It’s not now. Right now, it’s time to check in with myself and that’s about it. Right now is not the time for the business that usually consumes me. Thinking about the past few days I know a lot of things have gone on. I woke up this morning to an empty house due to your brothers staying the night at your Mimi and Papa’s. They were going to be gone all day long which I knew was more than I could handle… you know, the whole being home alone until the evening. I woke up and thought, “Fuck. This is not going to be a good day, if you are home until 5 or 6 tonight, in this quiet, empty house. I threw some things in a bag and headed out the door. I sent Dr. Jo a text that simply said, “Coming up there for the day to go hiking.” Up there being Sedona. Why not? It sounded like the perfect thing to do instead of a sad/lonely day at home. She told me to just come to her house when I got up there and we would go hiking, together. Even better.

I arrived around 11 to the one place that now feels like one of the safest places in the world to me. A place that fills me with solace and gratitude. The comfort of Dr. JoRo’s house and that beautiful place of Sedona that she lives. I am no fool. Without her I am quite sure I would not still be here. I’m not too proud to admit that she has pretty much saved my life. In a weird way I feel like she’s been waiting for me for a long time. Or rather, we’ve been waiting for each other. I’m quite sure we were supposed to meet in this life. Just fucking sucks it had to be this way. I’m just thankful I found her when I did because if I did not, I am sure I would be in a mental ward, doped up on 20 different drugs, because don’t you know, a pill makes everything better/go away. Fucking emotionally irresponsible bullshit that medication thing is. More on that later…

Dr. JoRo grabbed her expert friend/neighbor in all things Sedona/nature/trails to take us on a little adventure. It was a good 2 hour hike where we talked but in a quiet/respectful way. It as nice as nice can possibly feel. Much better than being at home, lifeless, in bed where everything hurts so much that I think the pain alone is actually going to kill me. We returned to her house where I gave her one last hug before she leaves for her trip to NYC. So wish I were going with her. Missing our favorite big city so much. After I left Jo’s I decided I was not ready to go home yet. I drove through Sedona to go on my own hike, with my non existent map. I found myself hiking through the trees, fighting with a lot of sticker bushes/ branches, and scaling the side of some huge rock to perch myself up on a cliff where I settled into a couple of hours of reading/writing/sitting with your blanket while the hot sun poured down on my shoulders. My own therapy for the day, I guess. I left Sedona and drove way too fast with the music blaring way too loud during the entire drive back to Phoenix. I let myself get lost in the world of Pearl Jam for a while which always makes me drive faster/miss you so much more.

I came home and your brothers were still gone. I jumped in the shower and decided I would meet Rita for a dangerous night out. We went to see “The Hunger Games.” This was totally dangerous for 3 reasons. 1) I never go to movies anymore. I have a hard time sitting still. 2) We went to some totally sketchy theatre (o.k. so not really… just downtown phoenix) 3) We went to “The Hunger Games.” A movie about kids killing kids. Or kids dying. Or if you have a dead kid, you should maybe not watch this movie. I didn’t really think about this, going into it. I didn’t really think about it until there was a scene where a little girl dies and they do such a good job making you feel it that I actually felt like I was the girl in the movie, kissing your lips for one last time and crying out like a mother who just lost her child. Feeling like the mother that I am who watched you die. I know what happens. I actually know what it really feels like in real fucking life and not just by watching it on a movie screen. Rita grabbed my hand and asked if I was o.k. I nodded yes as the hot tears slid down my cheeks. She held my hand until the scene was over and then asked if I wanted to leave. I told her no, that I was alright. I lied, but I really wanted to see the ending. It was a pretty good/entertaining in a Lord of the Flies kind of way, movie. One that I’m sure I would have loved before losing you because the reality of it would have never touched me, right? Yeah right. So we all walk through life, thinking. So thankful I don’t have that problem anymore, Ro. So thankful that I get to have you dead so I no longer know that I or anyone around me is immune to death. I fucking knew that before you. I talk to Jo a lot about how I always had a feeling that you were not going to be mine, forever. How I was never worried about you learning how to count to 100, how I never pushed education stuff on you the way I did with your brothers. I tell her I was always so happy and thankful for the exact moments we lived in. Not the next day moments. Not even the future. Just the present. Just when you were mine and I was yours in that exact second of the day. It made for the best/funnest life in the world. It made for the happiest life I’ve ever felt by just being with you. JUST BEING. There were no expectations. Everything was so pure and organic and real. It was just us and we really did whatever you wanted. You wanted to wash your trucks outside, naked, in the mud? Done. You wanted to rub your little dirty muddy hands all over our windows? Done. You wanted to spray our sliding glass doors with the hose? Totally! You wanted to color on them too? Alright! You want to stab our leather couch with a pen and make big holes in it, big deal, Ro. You were leaning/exploring/pushing boundaries the way you should have been. I was never going be the one to contain you creative mind. A mind that always seemed so much wiser than even mine. You knew what you were here to do. I truly believe that. I know you are still here, baby doll. It’s just the physical part of you that I miss so much.

Ronan. Holy shitballs I think I hate Easter. Actually, I don’t think I hate Easter, I know I hate Easter. Easter without you this year, sucked balls. And not in a good way. We didn’t celebrate Easter at all this year. We celebrated Feaster instead and it was awesome, for being not awesome. We spent the weekend hanging around the house. I cooked a Brisket and and taught your brothers about all things Passover. You cannot have a proper Feaster, without a little religion. So, we talked a lot about Passover and what it means. We went to our own church on Sunday which was in Sedona, at Oak Creek Canyon. We spent Sunday hiking, getting dirty, playing in the water and your daddy even jumped off the side of a cliff. We spent Sunday doing all things that you would have loved. I tried to have the best day possible by getting lost in the world of your brothers who seemed to have a wonderful time. I’m not going to lie. It was an exhausting day, for being as relaxing and peaceful as it was. There was not a better way for us to spend the day, but it was still brutal to spend our first/last holiday with you, without you. I was glad when the day was over and I was able to lay down and fall into my Ambien induced coma. I didn’t have a choice. Sometimes I just have all I can take during the day and fighting with my sleep last night would have thrown me over the edge. I fell into a black oblivion instead.

So, today is 11 months of fuckery. I spent it alone, on a mountain and at the car wash. I found myself at the car wash today and looking back now, as I sit here writing tonight, I can actually laugh at myself and the shit that happens to me on a daily freaking basis. Case in point, victim one today, Danny’s car wash dude.

-Danny’s car wash dude- “How was your Easter, Miss?

Me- “Shitty.”

DCWD- “Really? Why?”

Me- “Because I have a dead kid. Because my son is dead.” -insert flow of snot/tears here/dripping everywhere

DCWD- uncomfortable silence, “Ummm… what? Really? Well, um…. o.k. Well, are you o.k.? Like for real? Because you don’t seem o.k.

Me- “Oh my gosh. Um, yeah, totally o.k., I’ll really be fine.”

DCWD- “O.k… do you want your floor mats washed?”

Me- “Yeah, please. Thank you so much.”

You know what else happened? For the first time today, when some other dude at Danny’s Car Wash asked me how many kids I had, I said 2! I about threw up. I went to correct my mistake, but I couldn’t get the words out of my mouth and I did not feel like explaining myself because I knew I would end up in hysteria. So, I freaked out in my head instead and just walked away, in a daze. That’s when I was approached by the other guy and that’s when the “I had a shitty Easter and I have a dead kid,” came flying out of my mouth. I am surprised I was able to drive my car after that whole incident today. I came home, threw myself in our bed, and sobbed. Then I put on my clothes and went inferno hiking in the hot, hot heat of the day. After my inferno hike, I came home, showered and picked up your brothers from school. I took them for a snack and off to the batting cages where we practiced baseball and all things fun. I didn’t know trying to have fun, would be so freaking hard Ronan. I just want to bury my head in the sand. But I continue to keep trying, for the sake of them and nothing else. Because those little boys’ deserve to have a mom who has not checked out, for as much as I want to, I just can’t. We came home and I was so tired. I helped them with their homework and after having all I could take, I found myself in my freaking bed, once again. Crying. This time, Quinn found me. He cuddled up next to me, and asked me what was wrong. I told him I just missed you. He sat with me as I cried for a few minutes (no mom guilt here at all) and I then made myself get up. We spent the rest of the evening at Uncle Jay’s house (lifesaver) swimming, eating pizza, and watching the Suns game. Thank GOD for that Uncle Jay of yours. Your daddy joined us and this shitty 11 month day is coming to an end.

I’m tired of being tired. I’m tired of being sad. I’m tired of all of this shit in this fucking crazy world. It truly is insane, Ronan. I cannot watch the news/read the paper because of all the things that I just cannot believe are going on. Some lady flushed her baby down a toilet. Facebook just bought Instagram for a Billion dollars. Everyone and their mothers are getting their own “reality” shows. Nothing out there, makes sense to me. It all makes me angry. None of it matters. It’s all “stuff,” getting in the way of real reality like kids dying and parents struggling to stay alive and survive. And wait… why are all these kids with cancer still dying and still being over looked? Shouldn’t this problem be getting a little better? See what happens, when I take a break? A whole lot of nothing gets done. I did hear that Mattel is going to make the bald Barbie though. I have not read the details, due to being unplugged from everything but I hope it is true.

Dr. JoRo is in NYC now. She asked for a little list of some things she could for me, during her one day off. These are the things I told her to do.

1) Run in Central Park at night. Thinking she probably will not do this.

2) Visit Sloan Kettering and kick Dr. Kushner in the balls for me. (she could totally dress up like a Ninja and do this)

3) Eat Fro Yo at 40 Carrots inside Bloomingdales. (this might be a little safer and was one of our favs)

4) Eat Pizza at Delizia’s for us. (another one of our favs)

I miss her so much already. She is not a very big fan of our favorite little city. I am doing my best to make her into a New Yorker, without being there to actually do it. Next time:)

Alright baby boy. This is all for tonight. Yes, I’m still in hiding and I have still been hiking every single day for our month of mother fucking madness. And today, I was EXTRA dangerous and did not wear sunscreen. My inner rebel was loving it. I love you. I miss you. I’m so sorry. I hope you are safe.

xoxo

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I don’t have a choice. I have to go.

Ronan. You’re dead? You’re dead. I’m here. Still here. Because of the someone who is behind all of this. The person who behind all of this, who is not being merciful to me. So here I stay. Blurry, blurry days. A trip we must take. No. No. NO. But yes. Me, the everything must be perfect before we go on a trip. The suitcases packed perfectly to a tee. Never to forget a thing. Everything thought out and so perfectly planned. I lived for packing you and your brothers up for our upcoming travels. So perfect. Even our house. The house. All beds made. Laundry done. Dishes put away. In case we get robbed while we are away. I wouldn’t want the robbers to come into a messy house. This is how my mind used to work. The anal mind that used to control part of my life. Now your daddy, just stares at me from the bedroom. “You need to pack. And the boys’ don’t have winter coats.” But I don’t want to go and I don’t care about the winter coats, I think to myself. “I’m not packing. I’m not packing the boys either.” Your daddy, the best daddy in the world, steps up to the plate. “I’ll pack the boys,” he says. “And I’ll take them out to buy coats.” I just look at him. “I’m sick to my stomach. I think I have the flu. I think I need to go to the hospital.” Your daddy kisses my head and leaves. I lay in bed. My jewish sister from another mother appears. She comes bursting through our front door with her arms full of homemade brisket, potatoe latkes, gifts for the boys, and silver sparkly disco sunglasses on. She yells at me from the front room. I peek out from my bed. “I’m here to take care of you, feed you and to dance for you.” I smile my fake smile. “Cut the BULLSHIT smile!!” she says. “I’m sorry. I don’t know what else to say because nothing that I say, will make this better. But I can dance for you.” She dances and jumps on my bed. She makes me put on the sparkly disco sunglasses. “I haven’t packed. I have laundry to do. I can’t do any of it.” “Well!!!!!!! That’s what I’m here for. I’ll pack you.” I say o.k. I eat some food. I watch as she grabs things to pack. “A couple pairs of jeans, your F U Cancer sweatshirt, your spirit hood, some workout clothes, some boots, underwear, pajamas, running shoes, some tee-shirts…… what else, mama?” “Nothing else,” I say. Nothing else. We sit in our living room. We watch some gun show on T.V. without the volume because I can’t figure out how to turn the sound on. That’s how much I watch T.V. now. Mandy Bee rubs my back. I let her while I listen to the 15 voice mails I have on my phone. All of which I have been ignoring. We light the menorah that sits in our window. We put your picture by it. Mandy Bee says her jewish prayer. I like it. I like the way your little face lights up in the picture from the flickering of the candles. Mandy Bee leaves. But then she comes back. “I’m not leaving you.” I crawl back into bed. She leaves. I throw up. Your daddy and brothers return. Quinn and I crawl up in Liam’s top bunk bed. We fall asleep. Ambien induced for me.

Morning comes. I ignore everything that there is to do, around the house. I shower. I throw up. I feed your brothers. Max and Ruby, comes on T.V. Fucking Fuck. Your favorite show. I throw up, again. I get your brothers in the shower. They are going to play at Cal’s house. We stop at the car wash before I drop them off. I hold their hands. I laugh and smile with them. I miss you. I drop them off. Little Heather, texts me. “Meet me at PVCC for a quick bite.” I do. I eat a grilled cheese and see all your little friends at day camp. I cry. I listen to little Heather, talk about so many things. I get lost in her world for a bit. She is good at letting me do that, without letting you get lost because she knows, it is always about you, even when LIFE is not. As LIFE, goes on for others. She embraces the you in everything that goes on and she didn’t even know you. I appreciate this. I leave little Heather but not before, Sam, her little boy, comes flying into my arms for a hug and a kiss on the lips. I smile at him and the way he reminds me of you. I drive to Dr. Jo’s but I stop at Starbucks before. I run to the bathroom and throw up everything. I brush my teeth, wipe my face and wait in line. I see a bucket full of the cutest little stuffed animals. I thought to myself, Ronan would love this. I panic. OMG. I didn’t buy Ro a gift for Christmas. I grab the stuffed animal. I start to cry. I wipe the tears and buy the little guy. I stuff him in my purse. I get to Jo’s office. I wait in the waiting room, but I really just set my coffee down and bury my head into my arms and cry. I don’t know how long I waited before she came out. 15 minutes maybe. She finds me and I make my way back to her office, only to fall on the floor and not the couch. We sit there, and I look at her. “Ronan’s dead?? Ronan died, right?? He’s dead?” She holds me and nods her head. “O.k.” I say. “Ronan is dead.” We sit. I cry. I look around her office. I see your picture. She asks if I remember her telling me that it was about 6 months after Chey passed away, that were the hardest for her. That the 6-12 months after, seem to actually be harder. I told her I didn’t remember. But I feel this way, now. I tell her I think I need to go to the hospital. I tell her how I can’t breathe. She is quiet and does not entertain my thoughts of a hospital. She doesn’t want that for me. She knows I am stronger than that; I think. We talk about what’s been going on. Halloween. Thanksgiving. Sucksgiving. Christmas. A birthday soon. The list goes on and on and on. I pulled out the stuffed animal and show her what I bought for you. She asked me what you would have named him. I tell her something silly, like Gary. We name him Gary. I look at her and say to her, “I don’t have a choice, right? I have to get on that airplane tonight and go?” She replies with, “Do you have a choice?” I tell her, No. I have to do this for Liam and Quinn. She says it is a sacrifice of love for them. I agree. I don’t want to go home. Back to the place that was our peace. Our solitude. Our paradise, without you. I have not been back, since right before you were diagnosed. It was the last place I spent with you, when you were “healthy,” but really had Stage IV cancer. I don’t want to but I don’t have a choice. I have to go back, someday. Your brothers are so excited. I tell her I’ll fake it, for them. I have to continue to fake this, for now as to not ruin their Christmas. We say our goodbyes. I ask her if her kids are coming up to Sedona. She replies with they are. “Well, all of them except the dead one.” I burst out laughing. That dark sense of humor that I so get. She tells me that Chey gets the top of the Christmas tree, every year. She tells me, that she is not a fan of these holidays either. I know why. I tell her I’m off to the airport to watch happy families everywhere, going to happy places. I’m going to ignore these families this year and pretend everyone has a dead child too. I used to be that happy family, chasing you through the airport with not a care in the world. Fucking asshole cancer. I leave her office, feeling better than when I had arrived.

I go home to a quiet house. I go into crazed mode, packing, cleaning, laundry, beds stripped, dishwasher unloaded. Robot mode. Survival mode. Instinct. Memory. This is what you do, so suck it up and do it. We get to the airport. 4 not 5. Where are you? Bags checked. “Woody, can you watch my things? I have to go to the bathroom.” I go. I throw up. I am so fucking nauseous.

I gotta go baby. I miss you. I love you. I hope you are safe.

xoxo

Ronan and a Rockstar

Ronan. Today was one of those days that so many things have happened, that I feel like I’ve lived a week, in a day. I fell asleep earlier, exhausted from everything. I’m up now. Lovely. For the 10 days that Macy was here, I slept like a baby. I slept in a way that I have not slept, since before you were sick. Last night, with no Macy in your bedroom because she had to go back to San Francisco, I tossed and turned all night. I’ve done the same thing tonight. Macy, my natural Ambien is gone and I am back to not sleeping. I talked about this with Dr. Jo today. We chalked it up to being about many things. We think a lot of it is the way Macy takes our sad, empty house and fills it with peace and love. I think I took great comfort in knowing that while she was here, your little room was not empty because Macy was sleeping in it. Now it’s empty again. It’s sad and lonely which in turn leaves me feeling unsettled. So, back to not sleeping I go. I will write to you instead.

This morning I started tossing and turning around 5 a.m. I was groggy from only sleeping for a few hours. My phone beeped with a text message. It was from Dr. Jo around 7 a.m. It said, “Call me ASAP.” Crap. My stomach dropped. Is this something bad? Is she o.k.? My mind immediately goes to the worst place possible which usually involves an awful accident, somebody being seriously ill or dead. I called her back right away.

“Hi Mama!” she said. I said, “What’s wrong? Are you o.k.?” She said she was. She said she was driving down to Phoenix from Sedona but she couldn’t wait until our appointment to talk to me as she had something to tell me. I told her to hold on, so I could get up out of bed. I didn’t want to wake your Daddy. I grabbed your GiGi and went into your room and curled up on your bed. “What’s going on?” Dr. Jo then went on about the dream she had. How she woke up at 2:11 a.m., crying from what she had just experienced because it was that powerful and vivid. It was all about you. She said she saw you. She knew you were dead. How you were so beautiful and had this glow surrounding you. She watched you as you kind of hovered above me but you were nestled in my arms. She said “Hi Ronan!” She asked if she could hold you. You told her yes. She was holding you. Macy was there. You kept telling her, “You have to tell my mom, it’s o.k. I was there with her and Macy. But you have to tell her it’s o.k! Don’t forget. Don’t forget to tell her I’m o.k.” She held you and she said she would tell me. You kept saying those words over and over. She said she went to put you down and you started kicking your little legs telling her you didn’t want to be put down. Dr. Jo said it was one of the most real dreams she’s ever had about a person other than the one she had about her father and the one she had about Cheyanne. I smiled at her dream. I was quiet and then told her the kicking your legs part is so something you would have done. She asked how I felt about her dreaming about you. I told her I was honored that you chose to visit her and that I was so glad that you did. She said she was honored because she never got to know you, but the fact that you let her hold you in her dream, meant so much to her. She kept talking about how beautiful you were, how you had all of your hair. I imagine you looked to her, in her dream the way you looked in real life. With your little pouty lips, tan skin, button nose, that sandy colored hair, and of course, those big blue eyes. Absolute perfection in every way. I am so glad you went to see her last night, Ro. For as much as I don’t know, her dream makes me think that maybe you are o.k. I still don’t know how you can be o.k., without me. But I have to try to trust that you are because I am making myself go crazy with worry, that you are not. I don’t know if that will ever go away but during that time that I listened to Dr. Jo, I felt for a few minutes that it could be possible. I hoped, anyway.

After I got off the phone, I started our day as usual. Got your brothers off to school. Met up with Katie for a quick coffee. Ran to Dr. Jo’s office for a long session. We talked about how last week was. Everything that went on. We went back and forth on the noise that is invading my brain. We made some decisions involving how I would go about handling it. She was proud of me and how I had taken the time to sit with some things instead of acting impulsively on them which is what I would have done in the past. I sat in her office with your blanket draped around my neck as I always do. I often catch myself burying my face into it and smelling it the way you used to. She told me I looked tired. I told her I was so very tired. She offered to fill me up with sugar to get me through the day. I laughed at the 10 Reeces Peanut Butter Cups she had waiting for me on her couch. I peeled myself up, thanked her, and gave her a big hug goodbye. She told me to call her later about some things. I told her I would.

I had a little time before I had to get your brothers. I came home just to get a few things done so your Daddy will not divorce me. Things that I needed to get done like paying bills and putting laundry away. I came home to our quiet house which I hate but I cannot escape at all times. I escape it a lot. I avoid being here, alone, in the middle of the day as much as I can. It is such a sad, quiet house without the little pitter patter of your feet. Without your little voice that used to fill up this entire house with such love. Everything is different in such a bad way. A bad way which includes this reality that will not go away. No matter how many miles I run in a day or how far away I drive. It’s here to stay.

My phone rang from a blocked number today. Normally, I wouldn’t have picked it up, but I was clued in earlier in the day as who it may be on the other end so I picked it up.

“Hello.” I said in my best not 15-year-old voice 😉 (that was for you, Sparkly)

“Hi, is this Maya?”

“This is she.” I replied.

“Hi Maya, it’s Bret Michaels.”

I simply replied, “Hi Bret,” as if I have known this huge Rockstar my entire life. It didn’t truly dawn on me, who I was speaking to. At least not while I was on the phone with him. That changed after I hung up and processed all that was said. It changed for the few minutes that I allowed it to, but then I remembered. Mr. Bret Michaels is indeed a Rockstar. But even more importantly, he is a dad. He is a parent. He gets this because at the end of his crazy filled days, it is the love of his life and his kids that matter most. He knows what really matters most in this world and it is not his name in bright, shiny lights. He gets the bigger picture of things and what is truly important.

He started off by saying how much he and everyone around him, thinks about us. How he has read this entire story. How sorry he was. I thanked him. He kept saying over and over that he wanted to help in any way he could. To please just let him know what he could do, and he would make it happen. He talked about how he gets asked to support a lot of charities, but he really only supports a few as he doesn’t want to confuse people. I know diabetes is close to his heart as he struggles with it and wants to find a cure. He told me that he wants to support this. How he wants to help me change things. We talked about the things he can do. We talked about the connections he has which are HUGE. He just worked with the Trumps on a Fundraiser that raised a million dollars. He told me he works closely with them and he would be happy to be the link between us. The things he has offered to do are bigger than anything I could have ever thought possible. I mean, I know I have huge goals and a very different vision for your Foundation, Ronan. I know how much I believe in you and what that little face of yours is going to do. Now, here is this huge Rockstar who believes in you too and is offering to do whatever he can to help. Here is a Rockstar who is not only talking the talk, but who wants to walk the walk. He wants to meet with me before the end of the year to get the ball rolling on some of the things we talked about. I started to cry. I asked him where this huge heart of his came from. He sounded choked up and I just started thanking him over and over. We left it by him saying, he would not be in touch next year…. he would be in touch in a few weeks so we can figure out where exactly we can take this. I hung up the phone. I sat in my car and cried. For so many reasons. The timing of his phone call could not have come at a better time. You know what I have been struggling with. If this was ever a sign to stop second guessing myself and my voice, this was it. This is it. I know not everyone is going to be o.k. with the way I’ve chosen to express myself because people are afraid of the truth. I don’t want to appeal to the everyone’s of the world. Because the everyone’s of the world are not worthy of your beauty. I believe the world is changed by the unique people of the world who are not afraid to take chances, who think outside of the box, who bend the rules, who don’t conform because they follow their hearts. I believe the world will change because of the people like Bret Michael’s. A man who has such a big voice but an even bigger heart. This is so you, Ronan. This is all you. You would have been so proud today. I smiled and cried because this is so fitting for you. You and your love for all things Rock and Roll. You and your wild and free ways. Because ALL GOOD THINGS ARE WILD AND FREE. In life and in death the wild and free, doesn’t change. It lives on forever.

So, after I stopped pinching myself today, I started putting together a plan. I ran some things past your Daddy. I tucked in your brothers. I fell asleep for a brief amount of time thinking about how the power of you and our love, really is moving mountains. I am so thankful that there are such good people out there, who believe in us and who want to help be a change for things like Neuroblastoma so that one day, a mommy and daddy don’t have to endure what we are having to survive. I told your Daddy how the thing I loved most about the Bret Michael’s story was that how it just came to be, naturally. How it wasn’t forced. I truly believe that is how the best things come about. I don’t want to have to plead my case to thousands of different people as to why you are so worth fighting for. I just want to continue our love story that is never going to have an ending. I just want to continue to write the things I think or feel. And if people like Bret Michaels are so moved that they want to help… well, that shows me that what I am doing, is a step in the right direction. I don’t want the “you,” to get lost in all of this. I refuse to let you become a “brand.” I refuse to let you be treated like a business transaction. You are my son. I promise, I will not let the you in all of this, get lost. Ever.

That is all for tonight Ronan. Thank you for being behind this. I know this is all you. I know it is all you, who is touching so many people out there, who are worthy of the beauty you are bringing to the world. The timing of everything has been too impeccable for you, not to be the one behind all of this. You were much too wise for this earth. It was always so obvious to me how different and special you were. The fact that you are making things like this happen, makes me trust even more that our adventure is far from being over. I am just here to sit back and let you guide me. Thank you for guiding me during the times that I feel the most lost.I trust in you. I believe in you. That is enough for now. G’nite baby doll. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

Mandy the Owl, Ben with the Bald Head, and Bret the Rockstar

Ronan. I guess I’ve had a hard couple of days. So many things have happened. Everything seems to be moving so fast, yet so slow. I’ll have to catch you up on some things since it’s been a couple of days since I’ve written to you. I drove up to Sedona on Tuesday to see Dr. JoRo. I could have seen her here in Phoenix, later this week but I honestly like the drive up there and back. It’s my quiet time in the car. I don’ talk on the phone. Sometimes I listen to music. Sometimes I don’t. I am always thinking of you. I cry a lot. Here in Phoenix, I feel like I am constantly on the go. It’s a race that often leaves me exhausted and I don’t get to sit and be quiet much. I am still trying to find that happy medium of grieving for you and letting my self being absorbed in the pain; without slitting my wrists. Sometimes it hurts so much that I’m scared to sit and just let myself just be. Sometimes I don’t think I can handle the pain. I worry about what will come of it. My mind can slip into a very dark place, with the blink of an eye.

My time with Dr. JoRo was long. Grueling. Good. We talked about everything. I always find myself staring up at your pictures a lot that she has on her shelf of the thousands of books that she has read. I cried a lot. She cried too. We listened to a song together as the tears slid down both of our cheeks. There was a lot of crying. There was a lot of fucking fuck words used by the both of us. She is helping me with a little research as far as trying to figure out who we want to help fund treatments for Neuroblastoma. I don’t want any of this money to go towards a fancy hospital building and advertising. I don’t want this money to go towards building a wing of a hospital with your name on the fancy door. FUCK FANCY. This money has to go directly to the RESEARCH aspect of this disease. This money that we are trying to raise will go to the team that we believe in with our whole hearts and souls. The team that we feel will up the survival rate and ultimately, find a cure. This has to be a doctor/facility that is going about things differently. Because obviously what they are doing for this disease is NOT working. But they keep doing the same thing, over and over. If you survive Neuroblastoma, it’s by luck of the draw and nothing more. I have 2 doctors I am interested in. I’m putting their names out there tonight. Dr. Giselle Sholler and Dr. Yale Mosse. I know Dr. Mosse from Chop. She is the one who has a little piece of my heart due to her passion for finding a cure for the nasty disease. But her hands are tied by the COG. I am not a fan of the rules she has to play by. If anybody wants to throw info my way about Dr. Sholler, or anyone else, feel free to do so. I’ll take all the help I can get. I want to meet with them both. I want to see the evidence behind what they are doing, and why they think it is going to work.

Dr. Jo knows you shouldn’t have died. But you did. She is going to help me every way she possibly can. She is doing more than just saving my life. She is going to help me fight this Childhood Cancer nobody gives a fuck, BULLSHIT. We talked about your Foundation. She tried to tell me I didn’t have to do any of this if I didn’t want to. I looked at her, gave her a half-smile and told her that it wasn’t my choice anymore. I told her I am not choosing to do anything. For me, this is not something that I am choosing to do. It is something I HAVE to do; just like I have to breathe, to stay alive. She looked at me and said she knew I was going to say that, because she felt the exact same way, 17 years ago when her baby girl died and she was locked in a closet, going through the Yellow Pages, trying to find someone to help her get through losing her baby girl. There was nobody. She almost died from the pain. She swore to Chey if she lived through it, she would change this and help other parents. The MISS Foundation was born because of her pain and because she survived. She survived, Ro. And now look at all the people she is here, helping. She is saving the lives of so many parents who feel so alone. She is a walking billboard for surviving one of the worst thing that can happen to a person, but she still managed to come out the other side even more beautiful than before. Stronger. Smarter. Wiser. It changed her in a way that a person never wants to be changed. As sick as it is, the death of her child has turned Dr. Jo into someone who fucking lives on this earth, walking on water. I know she doesn’t feel this way, as she is so ridiculously humble. But this is the way I see her. To me, that woman walks on water while cussing up a storm which makes me love her even more.

After I got home from a really long Sedona day, I had a meeting to go to for your Foundation. We had to choose some new board members. As of now, our board is really small and intimate. I want it to stay this way. I need the people on it, who have walked through hell and back with me. Who you knew and loved because they are family. My sisters. The board meeting was VERY formal which was so weird to me. I got about half way through it but then my head started spinning. I lost it. In the middle of everything, I buried head on the table, in my arms, and just started bawling. I felt the hands of Fernanda and Tricia rubbing my back. I stayed that way for a few minutes. Then I just got up and bolted out of the restaurant, crying, crying and crying. Just like that. You know what I wanted to do? I wanted to run really, really, really far away. To the most dangerous neighborhood in Phoenix. I wanted to run out in the middle of traffic to get him by a car. I decided the boots I was wearing were too cute to ruin, so I sat down on a bench instead. I sat and soon Fernanda came and sat down with me. She sat and held my hand and pressed it up against the locket that I gave to her with some of your ashes in it. She kept asking me where I was. Where my head was. I couldn’t even answer her. I just sat and cried. I think we sat there for about 20 minutes. I ended up trying to gather my thoughts. The fact that I was sitting around that table last night, talking about you, like you were a business made me sick to my stomach. It was too much for me to handle and I went into it, completely blindsided. I felt like I was being beaten to a pulp. I felt like my insides were being ripped out. I felt like I wanted to just die. I went home, after that meeting, looked at Warden Woody and said, “Give me a fucking Ambien.” He tried to argue. I wasn’t having it. The running off of 5 hours of sleep, for the past 3 days was caching up with me. After yesterday and last night, I couldn’t do another night of tossing and turning. I popped that little Devil and it was lights out until 7 a.m.

Today. Groundhogs day, all over again. Met a Lovie for coffee. Cried. Our lovie, cried too. Talked. Cried. Made some promises. Took a drive with her. It felt nice. Ran to meet Miss Mandy Bee for lunch. She came wearing her Owl SPIRIT HOOD because she is that crazy, that she thinks she is a Goddamn Owl, in real life. And we are both that weird that we like to wear our animal Spirit Hoods, everywhere, just the way you and I did. I’m wearing yours now, as I sit here and write. We sat outside at America’s Taco Shop. Mandy had some exciting news about getting the word out there about you. Just as we were in the middle of talking about you and I was starting to tell her what bullshit this is, that you died of this disease because nobody’s voice has been powerful enough to make the fucking world stop and LISTEN. Why the fuck does this have to be me? This should have been somebody else, 5 years ago and then you would not have to be fucking DEAD. I started to get really upset. I started throwing a pity party to Miss Mandy Bee. Why me? Why him? I don’t want this. I want this to all go away. I want him back. I don’t want to stay on this earth. I want to die. I don’t want to fucking do this. Just as I was saying those words, Ronan…..He appeared. Outside. On the patio where Mandy Bee and I were. Ben. What the fuck. Somebody is clearly messing with me, Ronan. Ben with the Bald Head. I looked at Mandy. I seriously thought I was dreaming. Mandy watched me, she grabbed my hand. Do you want to leave, she asked? No, I said. His Dad came and sat down and said Hello. His mom came out next. She looked at me and said, “You’re Maya, right?” I said indeed I was. She asked if I remembered her from the clinic. I had forgotten her face. But I remembered Ben’s. I stood up to give her a hug. Her husband hugged me as well. We sat and talked. They looked sad. They looked scared. Ben looked beautiful. I wanted to eat him up. I wanted to spend my whole day getting lost in his dimples while kissing the top of his bald head. His mom kept saying she felt like they were upsetting me. I was upset alright, but it wasn’t for the reason that I think she thought it was. I was upset because just 10 minutes before they arrived, I sat and bitched that none of what I was doing, mattered because you are gone. I gave into the selfish Maya that sometimes comes out because the bottom line is, YOU ARE DEAD. But Ben is not. Ben is here. Ben is still fighting. Ben saved me today. I know that was a sign from you, Ronan. That was too much of of coincidence, for it not to have been. That was your way of communicating with me. That was your way of saying, “Hey Mama! Don’t give up! I’m right by you, helping you. Mama, you have to be the loud voice now. You have to take everything you are doing and keep going, for all the other kids out there. For all the other kids who deserve a future. For me, because this is what we were meant to do, together.” Ben was you today. And Ben was exactly what I needed at that exact moment. I know it was you. Thanks, Ro. I’ll keep on truckin’ until the world turns into a sea of Gold for SEPTEMBER. But PURPLE, for you. Ben gave me a big hug goodbye. I kissed the top of his head. It reminded me so much of yours.

I spent the rest of the day, lost in what had happened at the Taco Shop. I ran over to Katie’s store. I was sitting at the counter, with my computer, doing some things. Christy and Katie were behind the counter, working. Pandora was on, as always. As I was sitting there, one of your favorite songs started to play. Angus and Julia Stone, “Big Jet Plane.” I sat there, stunned. I looked up and said to the girls, “This was Ronan’s favorite song.” I covered my face and started to cry. Christy asked if I wanted her to turn it off. I told her no. About halfway through the song, my phone rang. Of course it did. Was this you too? How does this always happen, every time I seem to be having a really hard moment? Our favorite lovie always knows when to call.

I picked up. I said one word.

“Hello.”

“Why are you crying?”

-how the fuck does he know i’m crying?? all i did was say hello.

“I’m not. I’m fine. I don’t know.”
– i start to cry, harder.

“What’s going on? Yes, you are, cut the bullshit and tell me what’s going on. Please.”

fuck. why can’t i ever pull the wool over our lovie’s eyes? i don’t want to say why i’m crying. but i did.

I think it went something like this……”Because I’m sad. Because of the song on the radio. Because of the board meeting where Ronan is a business. Because I miss him. Because of Ben at America’s Taco Shop. Because of Thanksgiving. Because I have to fucking survive Thanksgiving. Because I don’t know how I’m going to get through it. Because I haven’t slept. Because I want him back. Because I JUST WANT HIM BACK.”

Silence.

“I’m sorry, darling.”

I don’t remember much more of the conversation. But by the time it was over, I had stopped crying. It was enough. It was like an invisible hug, from you.

I left to pick your brothers up from school. Quinn had a sore throat so I had made him a doctor’s appointment earlier in the day. I stopped to feed your brothers, before our appointment since we didn’t have time to go home. I went into Jack and the Box while your brothers waited in the car. It was pretty empty. There was a man at the counter. You could tell he was homeless. He was dressed as nice as he could possibly be. His shirt was tucked into his pants. He was older, probably in his 60’s. He was pulling out coupons to pay for his 3 dollar meal. He smelled awful. He needed a haircut and a shave. He was hungry. I could tell he was so very hungry. I waited my turn. I watched this man with the kind, sad eyes. He didn’t seem to notice me. I watched as he paid for his food. I watched the way he sucked down his drink like he had not had anything to drink, in days. I’m ashamed to say, in my old life I probably would have felt sad for this man, told myself you are so lucky, Maya. But it is very possible I would have just looked the other way while counting my blessings. Not today. Today, I wanted nothing more but to take this man home. Feed him. Let him shower. Give him clean clothes and a bed to sleep in. I wanted to sob for this man. I wasn’t sure what I was going to do, but I knew it wasn’t going to be nothing. I paid for my food. I watched the man, standing at a table, putting his coupons away. I took out one of your cards. I wasn’t sure how do approach this man, as I didn’t want to offend him. I walked over to the table that he was sitting at. I gave him one of the cards with your picture on it. I handed him a 20 dollar bill. He looked at me and said, “No. No. Really? Is it that obvious?” I simply said, “No. Not at all. This is not from me. This is from my son. He died of cancer. He wants you to eat.” The man tried not to accept my 20 bucks. You could tell he wanted it, but you could tell he was also a man who still had a pinch of dignity left. He told me thank you. He told me that I should save my 20 dollars and give it to the humane society. I told him I didn’t want to save an animal.(sorry. i’m am a animal lover. but these days, kids with cancer just tug at my heart a little more. today, this hungry man, tugged at my heart a lot more) I told him to please take the 20 bucks. I told him to go and do something kind for someone else. He promised he would. I believe him. He told me, that he had just spent his last 3 dollars, on his meal. I am such a skeptic of human beings, Ro; but not today. Today, I believed this man. Today, I believed in the human spirit and I believe that, because of you. It’s days like today that I know that you are making me a better person than I could have ever imagined. It’s days like today that I realized that I need to stop fighting all the little gifts you are leaving me because I know they truly do exist. And I know I am worthy of receiving them. I know they won’t bring you back but I know they will keep you alive.

I have to go now, Ro. Too tired. Too sad. Too much. I love you. I miss you. I’m sorry. I hope you are safe. I love you to the moon and back, baby boy.

One last thing. But not a little thing. A HUGE thing. Bret Michaels. Bret Michaels the kick ass Rockstar who is the genius behind the band, Poison. Bret Michaels went on the Regis and Kelly show today. He wore your F U Cancer bracelet, Ro. He is spreading the word about you. Can you believe this???? I am in awe. We so need people like this, behind your cause. We so need a voice for Childhood Cancer. Education=Awareness and Awareness=CURES. People have to start listening. Because of what that man did today, they are going to listen. I have a feeling the gorgeous woman in his life, had a little something to do with this as well. It takes a strong family united, to get things done. Today, they did this, for us. For YOU. For all the other parents and kiddos out there who have been forced into this nightmare. For all the parents and kids out there who are helpless and so scared. He helped us all today and I wonder if he has any idea, how much it means? How this could really get the ball rolling and start changing things. Because babies/kids/teens need to stop being fucking MURDERED by Childhood Cancer. So Mr. Kickass Rockstar Bret Michaels. Thank you from the bottom of Ronan’s wild and free heart. I know you know that all good things, truly are wild and free. You are an amazing man. And gorgeous Kristy. Thank you for being the raddest wild and free mama, behind this man by doing something so selfless and kind. You two, are amazing.

Ro baby. Did you ever in your life think that for only being almost 4, that you would have so much power? I always knew this. Your beauty alone moved mountains while you were among the living. Now look what it’s doing and you’re not even here, Ro. You are that special, beautiful, and magical. You will always be mine. And I will always, be yours. Forever. I love you.

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The Silver Lining in the Clouds. I Wonder What it’s All About.

Ro baby. I haven’t been avoiding you. But I’ll admit it. For the first time ever, since starting this blog…..I’m scared. Scared because of the weakness that I gave into. Scared because I’m NOT as strong as everyone is always telling me I am. Scared because of the many days that I don’t think I can survive this. Scared because of the reality that I had to wake up to, after truly trying not to survive this because the pain is sometimes just too much. Scared because I came closer to the dark side than I ever have, and it was so easy to do. Just like that. No thought. Only impulse. Consumed by the pain of my reality, that you are never coming back. NEVER. I know I talk about you dying all the time, but do you want to know the truth? I still think in my heart of hearts, that you are going to come home again. That your Daddy is going to one day, walk through that door, carrying you in his arms. That is how delusional I am. This is how deeply I just cannot wrap my head around the fact that you are never coming back. I cannot accept your death. I cannot accept our pain. I cannot accept our life, without you. I just want you back. I want you back, so badly that I feel like it should so easily be able to happen. This is how my delusional mind works now. Nothing is real, so your death can’t possibly be real, right?

I told Dr. JoRo that so many nights, when I’m out running, all I think about is some van pulling up next to me, grabbing me and pulling me inside of it. Do you know what I see in that van? A bunch of men in white coats and masks. They are holding you and you are alive. They explain to me that you really are not dead. I see your face, your smile, your tears of joy because you are back in my arms, where you belong. These men tell me that this was just an experiment to see how strong a mama’s love, really is. To see how much pain a mama could handle, before she could handle no more and did something really crazy. Like the skydiving I am planning to do on Thanksgiving. I’m just trying to decide if it will be with or without a parachute. If you would have asked me last weekend, I would have said without a parachute. If you ask me tonight, I would say with one, please. Dr. JoRo and I joked about this tonight. The skydiving thing. We laughed as she said I should throw a turkey out of the plane before I jump. Then our dark sense of humor took over as we giggled about the headlines of the news that day. “Runner killed by a flying turkey, on Thanksgiving Day.” And they said turkeys couldn’t fucking fly. Oh, how wrong they were about that.

So, Ro. After the weekend of the dark side…. it was very highly recommended that I go to Sedona on Monday, to see Dr. Jo. I drove up there, happy to do so. I like that time alone in the car, driving to the place that makes me feel a little peaceful. I had a lot of people offer to drive me but I politely said no thank you. I needed to clear my head, before I bared my soul. I was greeted by Dr. Jo, like always except for her hug was a little tighter this time and I had to listen to her apologize for being out-of-town, for work, during my little crises. Nonsense I told her. It wouldn’t have mattered. I knew that we were in for a long session, to figure out what lead up to this. Besides the obvious.

We talked about my week. Shit. I had a lot of shitty shit shit, happen. Too much shit that I wasn’t even aware of, because I had let everything build up and roll off my back. Trying to be the Superwoman, that I so am NOT. I need to remember this, more often. And Halloween. I was not prepared for how hard it was going to be, but I had tried all week to prepare myself for the worst. Our favorite holiday, without you. NO. All of your “friends,” dressing up in their costumes. NO. Thinking about what we would be doing, if you were here, like you should be. What would you have worn? I spent most of the week thinking about not being able to dress you up. I spent most of the week, crying about it. I went to PCH to help Sandra. I ran into a girl there who used to work at the front desk of the clinic. “How’s your baby!?” She said. “My baby?” I replied, puzzled. Do I have a baby?? I couldn’t remember. I said, “You mean Ronan?” She said, “Yes, I haven’t seen you guys in a while.” I must have looked like a deer in headlights. “Oh. He passed away.” I said as the tears formed puddles at my feet. She felt so bad. She hugged me and told me how sorry she was, that she hadn’t heard as she had been out on maternity leave. I told her thank you. I asked how her baby was and did my best to get myself under control. I had to put on my best game face so I could go and try to help my friend. I did an o.k. job. Helping out Sandra, is one of the few things that makes me feel o.k. in life. It reminds me of why it is that I am going to keep fighting this fight when there are so many days that I do not want to anymore. Seeing the way cancer has destroyed Mia’s little body and robbed her of her childhood pisses me off so badly and it is exactly the kick in the ass I need to carry the fuck on. Or so I thought, but it didn’t save me during my weekend of death.

Back to my Dr. JoRo session. It was long. Grueling. We made a plan because I cannot have another weekend like last weekend. My plan does not include any sort of hospitalization. Sorry to all of you out there, who think you know best. You don’t have a fucking clue. I know you mean well, I know you care, but please don’t act like you truly knows what this feels like for me so therefor, you know what is best for me. Because you don’t And I hope to RO, that you never do. I do not need to be in an institution. That is not the answer. What would that solve? My safety? No. A hospital cannot save me. Dr. Jo cannot save me. My husband cannot save me. My living children, cannot save me. Only, I, myself, or the self I have left, can save me. ME. ME. ME. ME. Not you. Not my friends. Ronan? Yes. Of course, Ronan. Can you bring him back to me? That is the only thing that would 100% guarantee that I will be able to survive this life. I know I have to keep going, but sometimes I just want a break from all of this pain, this life, these tears, this heartbreak. I have to find that break, without breaking myself and everyone around me. I am thinking of trying out for a fucking roller derby team. I’m thinking I had my little break over the weekend and it was the wake up call I needed. I think I need to figure a lot of things out, so I can start to put myself back together again. I think I need to start letting my husband back in a little more and stop pushing him away so much. I think I cannot do this alone, like I have tried so hard to do. I think this life is totally fucked but it is my life to live now. I think I’d better start figuring out how to do that, sooner, rather than later.

Dr. JoRo is checking in with me everyday. Your Daddy and I went to her support group last night. Together. It was the first time we have done something like that, the two of us. I tried to tell him he didn’t need to come, that I could do it alone. He insisted. I am so glad he did. I arrived first. I sat down, in my chair and immediately felt myself retreating into my dark, alone place that I often tend to go when put into a new group setting. The room soon filled with other parents, all there for the same reason as me. Because we all belong to the same fucking club. The club I like to call My kid fucking died and I don’t want to be here anymore club. The worst club to be a part of in life. Dr. Jo was leading the group which is the only reason I went. She arrived and things got started. Everyone took turns going around to tell their story. It was almost my turn to talk about you. Your Daddy walked into the room, late and sat down next to me but not before kissing my lips. I just looked at him and buried my head into his chest. I couldn’t talk last night so he talked for me. He told a little piece of our story, to this room full of sad strangers. I hid my face in the side of his neck. Dr. Jo asked if I wanted to say something. I told her No. I couldn’t stop crying. I told her I didn’t want to be there. She said she knew. I stayed though. We stayed. Together. For as bad as it felt, it felt good too. The group lasted 2 hours. It was full of so many different people. Young, old, black, white, Believers and Non Believers…. once again I am reminded that death does not discriminate. It can happen to anyone. Everyone is at risk of losing a child. No matter what choices you make in life. Good or bad. It doesn’t fucking matter. After the group broke up, we talked with Dr. Jo for a bit. I was so glad to introduce your Daddy to her, and vise versa. It was like watching 2 parts of my soul, connect. It was magical. Your Daddy talked to some other parents. I sat with Dr. JoRo and watched him. She looked at me and goes, “He has quite a presence, doesn’t he.” I looked at her and told her I knew. He’s always been that way. I am so fucking lucky to have him. I am so fucking lucky and thankful that he loves me so much, that he is willing to put up with me and all of my craziness. That when push comes to shove, he’s not leaving. Ever. And how I love to push buttons. I think it was Sunday night that your Daddy grabbed me and told me enough was enough. That I needed to stop because no matter what I did or what hurtful things I said, he’s not going to walk out on me, the way that my dad did. That when he married me, it was forever so the self-destruction that I am engaging in, needs to stop because he’s not going anywhere. His words slapped me hard. His words shook me to the core. Sometimes I need to shut the fuck up and just listen to him. I did on Sunday. I need to do it more often. The truth of the matter is, we are in this, together. Forever. He lost you too. He can’t lose me as well. I won’t do that to him. You loved him too much. I love him too much. My grief often blinds me of this. I needed the little wake up call I had over the weekend. It had to happen for me to realize a lot of things that I have been forgetting.

After our support group last night, your Daddy and I had a late dinner out. It was the first time, in so long, that we have went out, just the two of us. We sat at Hillstone, in a cozy booth, and tried to act like the normal couple that we no longer are. The normal couple that I would give anything to be again. The normal couple that we used to be that felt so blessed and thankful and proud of the life we had created which revolved around us and the three of you. We shared the artichoke dip and a burger. We talked quietly but I was soon distracted by the early 40 something couple who was sitting in front of us, making out and feeding each other apple pie. I started stabbing my burger with my very sharp knife, over and over again. “Really people. WTF. Who is THAT happy? At 40? They are either having an affair, or they are having an affair. Nobody is that happy. I think I am going to throw this burger, across the room at their table.” Your daddy looked panicked as he now thinks I am so out of my mind, that I may actually do it. He grabbed my hand. “Stop stabbing your burger. Calm down.” But I didn’t want to calm down. I wanted to really chuck my burger across the table at them. And I wanted to tell them how I used to be that happy, until you died. But I think it is gross to make out in public and that they needed to get a room. And feed each other apple pie, elsewhere so I didn’t have to stab their eyes out with my knife. Your Daddy and I got up and left there, holding hands, as it was the best we could do. We are doing the best we can do, which at this point only seems to be surviving. But surviving together.

I started writing to you last night. I couldn’t finish it. I was so tired that I fell into a deep sleep almost as soon as my head hit the pillow. Your Daddy asked for time with me. For me to put the computer away. I snapped at him and instantly felt guilty. I should have explained to him about the anxiety I was feeling, from not writing to you, for a few days. How I want him to understand and respect that although you are not here, I still need my time to take care of you and now, that comes in the form of writing to you. Without this, I don’t know how I would cope at all. How important this is to me, to still nurture the relationship between a mother and a child. My dead child. How guilty I feel, during the times that I don’t write to you and how that guilt builds up because I feel like I am betraying you. Like you will think I have forgotten to tuck you in at night. My writing is my version of tucking you in, bathing you, kissing you, feeding you, holding you, wiping your tears, fixing your ouchies, and loving you. It is so important to me to continue this, for you. And for me. So, I started this last night, but should have listened to your Daddy because the fight I tried to put up, insisting that I needed to write to you, didn’t even pan out because I was that tired. Without the Ambien. You know what I’ve found is a natural remedy for sleep? Tears. Lots of tears. Endless amounts of tears that never stop so that when the night comes now, I am so tired that sleep is just begging for me. Such a far cry from the insomnia that consumed me for a good year.

I woke up today with a fuck ton to do. I woke up late. 8:00. I was so tired I felt like I could have slept for days. I took your brothers to school and got ready for someone to come over to the house from AZ Central to take my picture. Weird. It was actually fine. But something that I’m obviously not used to in my regular mama/cancer mama/bereaved mama life. I threw on a wrap dress that I have had forever. I took the time to blow dry my hair and throw on some red, spicy MAC lipgloss that I love. Because I heart red lips for everything. Red lips make everything better. As soon as the photographer got here, we settled into an easy chit chat. He was super sweet and I told him to make this picture thing as painless as possible. He laughed and said no problem. I also told him I really wanted to wear my purple TuTu and my Fuck You Cancer shirt, but I was thinking that the Arizona Republic would not embrace that. He laughed and said I should have, but I was probably right. Can’t win em’ all but it was the thought that counted, right? He took some pics outside. I tried to smile but I told him how hard that is for me now. He said he was sorry told me that I didn’t have to. So I didn’t. I didn’t feel like faking it today. I didn’t have the energy to force a smile. No big deal, yo. Just another day in the life of being here. Or just being.

After the AZ Republic guy left, I wrote a little, and tried to get a handle on the overflowing mounds of laundry that I have been avoiding. It is all clean, but has just been sitting in our laundry room, piling up to be folded. UGH. I had an interview with Arizona Foothills Magazine at noon so I was trying to chill before that. I wasn’t sure what to expect. I had no idea of the major AWESOMENESS that was in store. My friend, Heather, came over for to hang out for the interview. She knows Michael Dee well, and is really good about breaking the ice and bringing about a positive, crazy energy. She also brought me Starbucks which I was in desperate need for as my weekend of death hangover still seems to be looming about. We hung out and soon Michael Dee and his communications director and amazingly talented photographer, Sarah Love, arrived. As soon as I opened the door, I let out a sigh of relief. I felt the love and connection, instantly. Good people. These are really good people who are here to hear our story because they truly care and want to help. I gave them a little tour of our house. I joked with them about the mounds of laundry and asked if they knew how to fold. They laughed and said they would do it in a heartbeat. I didn’t think they meant it. It turns out they did because that is how our amazingly almost 3 hour interview/therapy/crying/laughing/feeling you everywhere, ended. With the 4 of us, folding my laundry. Our house for 3 blissful hours, was filled with an amazing raw and organic energy as I talked about you and this crazy painful adventure that is beginning. Michael asked how I feel about being an inspiration to others. I told him I honestly didn’t think about it because all I see is you, inspiring me. And if that turns into inspiring others, than that is such a beautiful thing. If others are ready to embark on this ride with us, I hope they are prepared to hold on tight. Because it is going to no doubt be bumpy, rough, scary, and at sometimes, it is going to feel like death. But I know the end result is going to be something out of this world. Something so different, special, and strong…. just like you. Something that is unlike anything this world has seen. Because never was there a boy, as beautiful as you, Ro. The beauty of your physical self and soul combined was so powerful and I as your mama, know this. Guess who else is figuring this out? The whole wide world. The whole wide world who wants to be a part of this change. Not only in the world of childhood cancer, but in the bigger scheme of things as well. They all know, because of you, that there is more to life, than just THIS.

Ro baby. I am so tired. I miss you so much. I know I don’t have a choice. I HAVE to do this. Thanks for reminding me of this.

To my Arizona Foothills Family- Michael Dee and Sarah LOVE. I love you. Thank you for loving me. For loving, Ro without even knowing us. Until now. After today, you will forever be a part of our hearts and souls. I cannot wait for our monthly laundry folding therapy sessions. GO BIG OR GO FUCKING HOME! You are now, family forever.

xoxo

I Love You and that’s All I Really Know

Ronan. I’m pretty sure I had no clue the pain of missing you could become worse. I’m pretty sure I thought I had felt the worst of it. I was wrong. My first sign? Friday morning. What do you do on days like Friday morning? You sit outside of a Smart and Final for 2 1/2 hours, crying, sobbing, screaming, writing, and texting very intense things to one of our lovies. I believe I fully freaked out and considered driving to some rehab place to check myself in. I could not get out of my car. But I HAD to because, I had to bring drinks to Liam and Quinn’s class for their Halloween Party. OPPS! I forgot, “FALL FESTIVAL!” Halloween does not exist in schools here anymore. Thank God the real problems of the world are being solved. I finally got out of the car, while on the phone with our lovie, sobbing…. not making much sense. But I got the freaking apple juice I needed and hopped into the car. I drove to the boys’ school early and waited. I worked up the nerve to put on my “Hello! I’m just a normal mommy face! Nope! The love of my life did not just die. You must have the wrong person.” I wish it would have went down this way. I was helping set up with a mom whom I don’t know. She asked how our year was going. I should have just said, “Totally Awesome!” But I didn’t. I told her it was awful. I told her my almost 4-year-old had died only 5 and a half months ago. I was sobbing. I couldn’t keep it together at all. I tried my best. But I think I totally failed. I think I got a big fat “F,” on my report card. And it for once, was not for the word FUCK, but rather FAIL, instead. Quinn didn’t seem to notice that I had been crying when he came into the room, which is all that matters. I left Quinn’s room and skipped over to Liam’s classroom. You should have seen the way his face it up when I walked into his room. You should have felt the mama guilt wash over me instead of happiness. He was very intently reading a book. He was so focused. I sat and watched him. He was concentrating so hard on his book. My serious student. Your beautiful brother.

After I left the school I and headed down to PCH. Sandra needed some help with her Mia today. Even though I was a mess, going to help Sandra is something I am always happy to do. WTF PCH. Poor Mia and this damn button on the outside of her stomach which is used to administer her medication. The area itself is raw, gooey, red, and Mia has been screaming for months because she is in so much pain. After a lot of talk about what to do…. because we, the parents have learned….. we have to advocate for our kids’ well-being and make the choices and decisions because nobody knows the right answers. They finally gave Sandra a choice. A choice after she FOUGHT to get a choice to choose from. They told her they could remove old button and basically replace it with a tube that hangs out Mia’s stomach. Well, duh. Why wasn’t this done months ago. It seemed like such a simple answer, to relieve the rubbing on Mia’s stomach that was causing all of the pain and irritation. Her poor little skin has been rubbed raw for months while everybody just walked around, not knowing what to do about it. How is that acceptable in this day and age? Sandra looked at me and said, “What do you think?” She asked me in a room full of fucking DOCTORS when they should have been the one’s making the call. I just looked at her and told her, it wasn’t even a choice….. get the thing that is hurting her so badly, out of her. The end result was she had the GI Button taken out, and something else put in, to hopefully give Mia’s skin a break. But Sandra, had to make the fucking request. It wasn’t offered to her. I mean seriously? How is it acceptable when there were other alternatives out there, but nothing was put on the table? Doesn’t anybody care? And can I please vent about the doctors assistants that were in the room with us as well? Two of them. Two girls, who are sitting back, staring like Mia is a Zoo animal on display. They didn’t say a word, but just sat back, smiling…. grinning from ear to ear. All while Mia is screaming, crying and Sandra has her head buried in her hands as she fought to find the right words and questions to ask for her daughter. I so wanted to scream, “What the FUCK are you all smiling at?! Is something cute or funny? Is there an imaginary fluffy bunny rabbit, running around the room that I do not know about?!” For FUCKS SAKE!

After we left there, Sandra texted me to thank me for giving her the courage to stand up and advocate for Mia today. I texted her back and told her that she didn’t need me for her courage today, that she was a badass. She said that she felt more badass with me around. I told her nonsense, that I totally think it’s her sassy hot blond hair that she now rocks. The hair that has grown back from shaving it BALD when Mia was first diagnosed. Nothing says badass like a mama who has a bald head, because her baby has cancer. I’m so proud of her.

I’ve decided, it’s official. I do not live on this planet anymore. Even though my body does, my physical spirit does not. It’s long gone. Nothing makes sense. I know nothing about life except what I know at this exact moment which is this: I’m laying in your bed. You’re dead. I miss you so much. I miss you so much, that I don’t know what to do or how to be. I can’t talk much about this weekend. Fuck. Tomorrow is Halloween. Fuck again. I met a new baby boy tonight. Cooper Ronan Bunger. He was sweet. Only 3 months old. I took a picture of the two of us. He smiled in it. I think you told him to. I love you for that. I’m sorry I failed you. I’m sorry you’re dead. I’m sorry I have to do Halloween without you tomorrow. It feels like betrayal. I have to drive to Sedona to see Dr. Jo. Because I’m scared. Because I’m tired. So. Very. Tired.

P.S. I forgot one other thing, that I do know. That everyone, who reads this blog, should click on this link: http://www.arizonafoothillsmagazine.com/best-of-our-valley-2012/voting/150.html and vote for our Miss Katy. Because her store is full of awesome things like Garbage Pail Kids,Sugar Daddies, Fake PURPLE and PINK Glasses, Invisible Ink, Silly Putty, and Retro phones that you plug into your iPhone, while you talk on it. It totally makes you look like the raddest kid on the block, in an old school kind of way. It it is the one and only thing that make me laugh today. Thanks Miss Katy Grace.

Goodnight my babydoll. You were the most beautiful thing that’s ever been mine. I miss you. I love you. I hope you are safe.

xoxo

Is it possible to Die choking on your own Tears?

Ronan. Days are filled with emptiness. They are not getting easier. Nights are worse. Halloween is approaching. How am I supposed to celebrate our favorite holiday, without you? If you were here, we would be going to your school tomorrow to celebrate. I would be tucking you into bed right now, but you would have been too excited to sleep. I’m sure you would be dressing up as someone from Star Wars. It was our tradition.

Baby Ro- Chewbacca. 2-year-old Ro- Master Yoda. 3 Year old Ro- Captain Rex. Who would it have been this year? I’m not sure. Does it matter? It does to me. Halloween cards come in the mail. But nothing for you. I lose it. “What the hell?” I scream! “Did he not exist?!” “Is he that easy to forget?!” The hot tears stream down my face. ” I want a card for him, too! Not just 2. 3 little boys. I HAVE 3 BOYS! I want him back! NO! I DO NOT WANT A PUPPY OR A FUCKING BABY FOR CHRISTMAS! I WANT RONAN! I ONLY WANT RONAN!”

I don’t get to go to your school tomorrow for your Halloween party. I get to go to only Liam and Quinn’s. How am I supposed to put on my bravest face to handle tomorrow? I don’t have a choice. I have to do it for them. I had Quinn’s conference this week. His teachers words….”He is a gift to me. Such a delight. So kind to everyone. Excelling in everything. Needs a little work on his handwriting. He is off the charts in his math….” I felt like I was in an alternate universe. I looked all around the classroom at all the kids’ work. I started to cry. I apologized to his teacher. “I’m so sorry. I have no idea what’s been going on in this classroom. I’m usually the mom that knows it all. That is always helping. I haven’t been in here once this year.” She just looked at me and said that it was o.k. That I have a pretty good reason, not to be. But I don’t want a reason or an excuse.  I just want my life back. I want to be the fun classroom mama again. I don’t know how the fuck I’m going to get through tomorrow. I have thrown up all day about it. I want to go to your school. I want to dress you up. But some evil mother fucker out there decided that you brought me way too much happiness in my life, so you had to go away. But I didn’t do anything wrong to have you taken away. I only loved you so much. That is the only crime I am guilty of committing.

I went to Sedona on Tuesday. Dr. Jo couldn’t make it to Phoenix this week, so I drove up to see her. We did our session at her house and then went and grabbed lunch. It was a long but peaceful day and night. I was able to smile and breathe a bit. I know you know why. You always do. I came home, relaxed and fell asleep all night long. My sleeping has been better. I have not taken my Ambien since the night before I left for my Sedona Grief Retreat weekend. I have been able to fall asleep and I have been staying asleep until about 2 a.m. I always wake up around this time and than, the pacing begins for about an hour or two. I look for you everywhere. I scream into pillows. I cry.  Dr. Jo says it’s my animal instinct taking over. I’m like the mama tiger at the zoo, who has been separated from her baby. The mama tiger paces back and forth. Sometimes she even chews off her own limbs  because she goes crazy not knowing what to do without her baby. I feel like that mama tiger. I’m trapped on the inside of the glass cage, looking for you, watching as everyone on the outside just goes on with their lives. Everyone is happy. How can that be? What? You have a new boyfriend? No. I don’t want to meet him. I want you all to go away. I don’t want to see life go on. I want life to end. I am incapable of feeling the happiness that you feel. That you deserve. I cannot be happy for you. So, please just let me be. I have nothing left to give anyone. I am doing my best to keep myself alive. That is all I am capable of now. Forgive me. But Ronan died. Doesn’t anybody understand? How is Halloween not canceled this year? How is your school, celebrating like it is a normal year? Don’t they miss you so much, that they shouldn’t? No. Only in my mind should they. Because to me, you were so special that the whole wide world should stop. But nobody misses you, as much as I do. Which means that nobody is even capable of feeling the pain that I feel. Which means that nobody loved you more. Which is why I physically hurt so bad 24 hours a day, 7 days a week. I don’t get a break from this pain. Ever. Not that I would want it. I wouldn’t give this pain to anyone else. It is mine to carry for the rest of my life because it reminds me every second of the day how much I love you. How much I will always love you. So much that I often think I am going to choke to death, on my own tears.

This week has been a blur. I took your brothers to a park to play after school. They had the time of their lives. They played football in the rain, with some other kids. I could have sworn you were right there with them. I cried on the way home because you weren’t. I told your brothers how sad it made me that you were not there, with them. How much you would have loved it. They were both covered in mud, soaked from head to toe, just like they should have been. Where are you? Who are you playing with? How is it not us? Why is it not us? Do you think I killed you? I was supposed to keep you safe. I promised you I was going to get you better. But then you just died. Just like that. How am I supposed to live with this, Ro?

I don’t know. I don’t fucking know anything anymore except everyday without you is harder and harder and who the fuck came up with the saying that the pain will get easier as time goes on? I know who. Some jackass who is not a mom. Probably some asswad fucking fuckwad scientist who had to bury their cat. Clearly it was not a mom. Or a dad. Who’s almost 4-year-old died.

I don’t know what else to say tonight. Except what I say to you, every night. I love you to the moon and back. I miss you. I hope you are safe. Sweet dreams, babydoll. I love you.

xoxo

P.S. Dear loveliest of lovelies:::::: So many of you sweet peas have sent the most beautiful gifts. A lot of it, pretty jewelry for me to wear. Please know these things, always make me smile. Today, I wore one of my new favorite things. A little delicate gold necklace that has, “Fuck Cancer,” inscribed on it as well as a small purple jewel hanging from the chain. Oh, how I proudly wore this today. Thank you, from the bottom of my heart. xoxoxoxo a million times over.

A Little Therapy and A Chinese Fire Drill

 

 

Ro baby. 10:30 p.m. and we are home. Safe. Tired?? Yes. Tired, but not really. You know how it goes here. Busy day, to say the least. Busy and full of distractions. I think I am going to crash and burn soon. Hopefully, not until after this little Fashion Show that has been so crazy busy. And I am more of the behind the scenes person. I have no idea how Katie has been running a business, organizing all of this, getting ready for her upcoming trip to China, etc…… She is a freaking tornado! We make a good team though. And those busy little bees of mine! Thank you for all of them as well! They are really getting things done. It’s amazing to see the passion and love that flows out of them. Plus they are ALL so SPICY! I love that so much. It makes me laugh. I have the best group of spicy girls surrounding me and “getting shit done!” Productive is an understatement. They are powerhouses!

Today. What in the world happened, today? Woke up. So tired from not sleeping the night before. Ran the boys to school, 10 minutes late. Whoops. Told Super Nate’s mom I would come to PCH to check in on them. They have been there for way too long and I have meant to get over to see them. They finally got to go home today. They were so happy about that. I poked my head in Nate’s room to find him playing on the couch with his mama. I brought him some little toys and a couple of Star Wars things. I tried not to get too teary eyed when I rubbed his bald head. It made me miss yours, so much. I talked with Beth for a while. We went over some things as I am trying to figure out the best way to help them out. I wish I could do everything but I mostly wish I could wave my magic purple wand and make this all go away for them. Since I cannot, I will do whatever else I can. Even if it is just something as little as helping them out to their car with their luggage and helping Nate buckle into his car seat. He is so sweet, Ro. And he loves Star Wars, just like you. It felt good being there today and helping out in any way I can. I know I don’t know his mama very well, but I feel like I do. Because I’ve walked in her shoes and I know how lonely it is. I know you are watching over them though. I know they are going to be fine in NYC when Nate goes in November for his surgery. But I still told her to just say the word and I would help with NYC any way I can. I mean that too. No questions asked. I am more than happy to be able to help them<3 You would be proud. You would love them. You would have been buddies with Nate. He gave me knuckles today, just like you loved to do. It made me smile.

While I was at PCH, I met up with a couple of our lovies. I spent some time with my new friend, Kathy. The Emily Center was named after her daughter, who passed away from Leukemia, many years ago. As you can imagine, we have become fast friends. She is another one of those Spicy women. They seem to be surrounding me now, Ro. I know you have something to do with that. Kathy has been volunteering at PCH for a very long time. She is starting to test out the new idea I am trying to put in place at PCH for a volunteer position. Kathy tried it out on Tuesday and seemed to be thrilled with the way it went. I loved watching the way her eyes lit up and sparkled as she talked about what she did and the way the families reacted. She said it was hard, painful, happy, sad, and exhilarating. She said she experienced about every emotion doing what she did and it was so amazingly beautiful. I sat back, listened, smiled, laughed and cried. She is such a little firework. I am honored to call her my friend.

After I left Kathy, I ran over to the clinic to see Sandra and Mia. I saw our Sharon. Love our Sharon. Mia was there to have her blood levels checked. Mia was having an off day. She was upset, sad, mad, and hurting. Once again, where is my fucking magic wand when I need it? For both her and Sandra. They so deserve a break. I just happened to have a tiny doll in my purse that stopped Mia’s tears for a few minutes. Poor baby. Poor Mama. Stupid Cancer. I wanted to whisk them both away. Off to some tropical island, where Cancer does not exist and where you would be waiting for us. I wanted to give my friend, Sandra a break today and tell her to take the day off, and I would take care of Mia while she went and did something for herself, which I know she NEVER does. But she so deserves to. She is going to Sedona this weekend, which made me so happy to hear. I hope it is peaceful for her and she is able to breathe just a bit.

I stayed with them for a little over an hour. I put “Strawberry Shortcake,” on my computer for Mia. I asked if “A,” was around. She was. I have not seen her since your service. She came and found me and just hugged me for a really long time. We talked for a few minutes and got caught up. I miss her so much. I know you do too. She misses us too. It’s so funny how many sparkly eyed people seem to be in my life now, Ro. It’s as if once you got sick, somebody just started placing all of these people in our lives. These extra special people, whose eyes twinkle just like yours. “A,” is one of our sparkles, for sure. Same with Dr. Adams. I have not seen her, since before you passed away and I didn’t ask if she was in the clinic today. I don’t know if I could have handled seeing her and “A,” both in one day. That would have been too much, I think. But I think of her often. She is a special lady, too. Very much so.

I got out of PCH around 1. I ran to meet your Daddy for lunch. After that I ran to my eye doctor for a quick appointment and then to meet your Daddy to see Dr. Rachel. I have not been to her, in a while with him. It was good. Good and painful, but I always leave there feeling better than worse; which is a very good thing. That’s all I can ask for, at this point. She is really, really, good at making sure both of what your Daddy and I are feeling, is validated. She is really, really, good at helping me explain how I am feeling and why, when I sometimes seem to be at a loss for words. I sometimes need a little help explaining things to your Daddy. She is really good at helping me do that. Turns out, I cannot do everything on my own. Sometimes I need a little help in trying to figure out this “new normal.”  It is fucking hard and a lot of work that leaves me exhausted, empty, sad and scared. Don’t worry. Not only am I trying to figure out who I am now, but I’ve got to figure out this mom/wife thing again. I still feel so utterly disconnected from them both. The self hate that comes from this, is a nightmare. I hate myself for so many things now and so much of that is the guilt that surrounds me because I have the 3 sweetest men here on earth, who just want to love me. But I am too sad to fully let them all back in. It makes me feel selfish and guilty. Clearly, I am just a bad person, right? Or so, Inferno Fuckwad Bob tells me over and over all day long. I am really starting to hate that asshole.

So, Ro. After Dr. Rachel, off to Katie’s to meet up with Liz and do a little work. After there, pick up your brothers, Luke and Lily. Take all 4 kids to Dr. Jo’s office to the KISS programs. A program for Kids who have lost a sibling. We stayed there for a couple of hours. I chose to stay in the kids room and not go to the parent support group that was going on. N0t such a good idea. It was so painfully hard for me to sit there tonight and talk about you in front of others…. and to listen to the way Luke, Lily, Liam and Quinn talked about you and what happened. Beautifully raw, innocent and painful. I couldn’t hide my tears and it ended up being way more intense that I thought it was going to be. It was good for all of them though. We did some really fun Art projects and I was surprised how easily they all opened up about you. It was pretty amazing to watch, but it really, really hurt as well. Next time, I don’t think I’ll be hanging in the kids group. It is going to be good for your brothers though. It’s a very non-forced environment. It’s more about being a kid. A kid who had something awful happen to them, but it is not going to define them. They are still allowed to be kids, while acknowledging the fact that this horrific thing happened.. but they are young and life will go on. Innocence can still belong to them. It just comes in a wiser form now.

After we left the KISS program, we drove home. I told your brothers and cousins about Chinese Fire Drills. I don’t know where that came from, but I was thinking of you and the memory just popped into my head of me being young and carefree. Your Papa Jim used to let me do them all the time with my friends. Before I knew it, all 5 of us were at a stop sign…. in our neighborhood……. safe of course. No other cars around. I threw the car in park and we all got out, started screaming our heads off and ran around the car.  They all were laughing their heads off and thought it was the best thing ever. I imagined you watching us and giggling away. I miss your giggle so much, Ro.

Luke and Lily are staying the night. We are home. Safe. Tired. I wish you were too. I hope you are. I hate this life without you. But I’ve got to find a way, to make it manageable. The Chinese Fire Drill tonight helped for about 10 seconds. 10 seconds of being without pain, is better than nothing. Miss you baby. Love you baby. I hope you are safe. Sweet dreams, Ro.

xoxo

The Chaos and The Calm

Ronan. What have you been doing? I miss you so much, baby. I don’t know where you are, who is taking care of you, what you are up to. I worry about you so much. All day and night. I’m still looking for you, everywhere. I went to Sedona, for the grief retreat. I’m back home now. I wish you were too. It’s so strange, being here without you.

Saturday was the day of the actual seminar. It started at 9:30 and lasted until 4:30, I think. I don’t remember much of it. There were about 16 other bereaved parents there. All with different/similar stories. Nobody there had lost their baby to cancer. Some had lost their babies very early on, at birth. Others had lost their children, tragically, in accidents or just suddenly because life is not fair, and death does not discriminate. We are all part of the same club. The club that nobody wants to be a part of. The fuckthisshitinowhavetoliveonthisearthwithoutmychildandidon’twantto club. It is not a fun club to be a member of. Nobody in that room on Saturday, wanted to out live their child. Everybody in that room on Saturday, would have traded places with their babies, in a heartbeat. But the choice was not theirs. They are still here, on this earth, fighting for their loved ones that were taken much too soon.

As soon as I got there, I felt uneasy. I went into shut down mode. We had to go around the room and tell a little about our story and what we hoped to achieve by being there. I don’t remember much about what I said. I was sobbing. I somehow managed to get out a little about you, in between my sloppy tears falling everywhere. I think I said out loud that I was only there because I don’t want to live this life anymore, without you. I don’t remember seeing anybody’s faces while I was sobbing/talking. I just remember wanting to run out of the room, so badly. I didn’t want to be there, having something like this in common, with all of those strangers. I wanted to close my eyes, snap my fingers, and hop into my time machine that would take me back to living life with you. I begged for our hospital life together. I begged for our Ryan House life together. I begged for anything but being where I was, on Saturday, as long as it involved being with you. I closed my eyes, wished for those things only to open them up and see that I was surrounded by the saddest faces I had ever seen in my life. The faces of 16 other me’s. I pinched myself, to make sure I was not dreaming. I felt the pinch and was taken slam bam right back into my reality. This cruel reality of being here without you. The reality that I would trade any day, for anything but this. I’ll never stop asking why this could not have been me. You deserved to be here so much more, than I do. What a cruel world we live in, that would take the life of you. You had so much to give. You were going to be so many things. I am trying really hard to carry on the beautiful life you would have lived by trying to make a difference in this world. It is so very hard, Ro. You would have done this, so effortlessly. You would have done it with one little wink from your blue eye. Your one little wink, would have changed the world.

After we all went around the room, we moved on to something else. I think we were supposed to be meditating about something. All I could do was pull my knees up to my chest, and cry. I couldn’t focus on anything else. Dr. Jo had been watching me closely since I had arrived. She came over to me and wrapped her arms around me. I told her I wanted to leave. She said she knew and continued to hold me and let me cry all over her. I think she held me for a good 20 minutes, while I went through an entire box of kleenex, snot, and tears. I really don’t remember much about anything else except I think the times I did talk, I said the word fuck a lot. I told the group about the name I had come up for my Grief. Inferno Fuckwad Bob. I think I got some laughs out of it. I truly did spend the entire 7 hours crying. It was painful but so very necessary. I have learned that I have become very good at distracting my grief. I needed to take that day and just cry about you, without stopping. I could have cared less if I was in a room, full of people I didn’t know. I knew they could relate to my pain. They all knew that I was only 5 months out of having had lost you. I was the newbie in the group. The one who had just lost their child, a very short time ago. They all remembered what it was like, being so new to all of this. They were gentle with me and didn’t expect anything. Many of them were surprised that I was even there at all, having all of this be so painful and fresh. Many of them said it took them years to deal with what I am trying to deal with. Which is my grief, I guess. I don’t even know if this is what I am doing as I seem to be stuck on a fucking merry-go-round that I cannot get off of. Round and Round and Round she goes, where ever she stops, nobody knows! Nobody does know. Not even myself at this point. I’ve always hated that fucking ride. And that song.

I met two mama’s in our group. Mama’s that both lost their kids to horrific car accidents. Mama’s who did not know each other, before losing their babies. Mama’s who now have a bond so deep and strong, it is as if they are twins. I didn’t talk to them much, except to learn that one of them had emailed me about wanting to do something for your Foundation. Very random that we both happened to be at this retreat. This mama, does a yearly Tea for her Ellie, who was killed by a drunk driver. She wanted to talk about how she had heard about your story and was wanting to hold the tea in your honor, this year. We exchanged phone numbers and hugs. I wanted to talk to these two mama’s more but I was so emotionally drained that I am surprised I was even able to peel myself up off of the floor and into my car to drive back to my hotel. Before I left, Dr. Jo asked if I wanted to do something with her later. I smiled and told her I would love that and I would call her after I got back to the hotel and rested for a bit. I somehow made it to my hotel, changed clothes and washed my face. I send Dr. Jo a text that said I was ready when she was. She offered to come and pick me up. I gladly accepted.

We went to her house to hang out. It is so perfectly her and I fell in love, instantly. She showed me her home office and her built-in bookshelf that I swear had thousands of books in it. I said to her, I’ll bet you’ve read all of these. She smiled that humble smile of hers and said she had. The brains inside of that woman’s head are something not of this world. Because it is not only her brains that she uses to think with, but her heart and soul as well. That is a very rare combination to find in a person in this day and age. We sat outside, underneath some twinkling lights, and the fresh Sedona air. My brain was pretty much fried but we talked for a couple of hours. About everything, but mostly you. About you and me. Me and you. Us. It was peaceful. I think I even laughed a couple of times. I never laugh anymore and it felt so nice. I don’t have any of my walls up whatsoever with Dr. Jo. There are only a few people in this world that I am able to be like this with anymore. She is one of them. She is the puller, not the pusher. She knows what to do with me, when nobody else, does. I trust that. I trust her. She trusts me. That right there, is everything to me. Plus, the fact that she is a super bad-ass, like the two of us, Ro. Brains, beauty, and badassness. That is a combo not to messed with. If not for her, I can guarantee you, I would not be functioning at all.

Dr. Jo dropped me off back at my hotel around 9:30. As I got out of her car I looked at her, smiled and said, “JoRo.” Her name and yours. A perfect fit like it was always meant to be. Like you have been leading me to her, this entire time. I left her car feeling more peaceful than I have since you left me. Even if the feeling, only lasted for a couple of hours, I was still so grateful. As soon as I got to the room, my head hit the pillow and I was out like a light. I did not even take my Ambien. In fact, I have not taken it in 3 nights. I’ve been able to sleep alright, without it. I have been dreaming, very vividly. I have been dreaming very vividly of everything except you. This makes me so very sad. I just want to see your face. I just want you to tell me you are all right. I just want to hear you tell me, you love me and miss me. You are visiting everyone, but me. Dr. Jo thinks it’s because I want to see you, so much that I cannot. I am fearful that I will never see you in my dreams, because I wish for this all the time. I would give anything to have you visit me. I know you know this. I think I am too caught up in this pain, to let my head clear enough for you to get to me. The pain that is only becoming worse, Ro. Everyday is harder and harder without you.

Sunday was our barefoot hike day. It was just me, Dr. Jo and a Daddy. We headed up the mountain, in silence. At one point, Dr. Jo and I stopped to wait for our other warrior Daddy friend and I whispered to her, that I never did things like this. Like hiking in silence. I told her that I always had my music blaring and loud. She told me it was much easier to be in chaos than calm. She is so spot on. It is so hard to be in the calm for me. Distractions everywhere. The louder the better. The busier the better. It takes courage to be in the calm. I have no idea, what it truly means to be courageous yet. I have a lot of work to do, little man. I have a lot to learn from Dr. Jo. I know you will help me. The barefoot hike was amazing. I felt nothing except for very connected to the earth and I was reminded of my capabilities as a human being. As your mama. I cried for you on that hike. I thought about how much you would have loved coming up that mountain, with me. The thought of not having you there, destroyed me. I looked for you anyway.

Ro baby. I wish I could write to you, for 2 more hours. I have so much left to tell you but I can hardly keep my eyes open. I’m going to have to finish the rest of this tomorrow. It is then that I will tell you the rest of my stories. About how much your brothers miss you. About how I sat and held Quinn as he sobbed for you last night. About how I sobbed with him and told him over and over how sorry I was. About Ellie’s mama. About my Fry’s Shopping experience today and how I was a mad woman crying all over that damn store and then had a “talk,” with the manager about the NO CHILDHOOD CANCER AWARENESS anywhere for September. She must have thought I was a lunatic. I don’t care. She gave me the phone number, to someone higher up than her. I’m on a freaking mission, baby.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.