A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo

The Eye of the Storm

 

 

 

Ronan. I am in the eye of the storm. The month of hell. You are working really, really hard, to make sure I survive this. You have been working so hard, that I can hardly keep up with all of the amazing things that have been going on. This week has been a blur. Between finishing my 30 day hiking challenge, working on some things for your foundation, preparing for our trip, a couple of amazing dinners about some ideas that I would like to see happen, getting ready for your birthday at PCH… I don’t even know what day it is. That is probably a good thing for today. I would not have made it through the week if I had been sitting around, thinking about where we were, last year at this time. I know where we were. I had 5 days left with you. Just 5 days. And tomorrow it will be four. I still don’t know how this can be, but it is. This is just the way it is and there is nothing I can do, to change it.

I had one of the best nights I’ve had in a really, really, long time the other night. You just happened to make sure your Fairy RoMo, got dropped in my lap at the beginning of the month of hell. How in the world did you pull that one off? I don’t know, but the stars aligned and the next thing I knew, your Fairy RoMo just landed in my lap. It just happened to be on the night of Rita’s birthday, too. The two of us met up with your Fairy RoMo at some Hotel that seemed to not have a name because it was as if we were somewhere completely else, not 10 minutes away from our house. We sat outside, under the stars and got lost in the night. We talked, laughed, cried, and worked on our evil little plans to take over the world, while curing childhood cancer and traveling to Iceland. I watched them, watch me. I watched the way they looked so so sad, yet both of their eyes sparkled in the night whenever we talked about you. I listened to the most beautiful story about a purple balloon that was let go in Central Park for you. I started to cry during this story. Not only out of sadness but also out of love. The sadness and love of the story that was told was one of the most beautiful things I have heard since losing you. I watched my friends as they looked at me and said, “You have to stay here. You promised.” I told them I knew. I remind myself of the promise I made 50 times a day to keep me going. After a very late night of lots of Roplans I came home exhausted but I felt peaceful. Being in the presence of those two very special souls heals little pieces of my heart. They leave me feeling inspired and my soul awakened. I know they are both gifts from you. It was because of them, that I made it through that May day.

Now it is a new May Day. May 6th. 3 more days. 3 more days is all I had left of you, at this time, last year. I had to get out of Phoenix. We left today. Left to go far, far away but it will never be far enough. This is not a vacation. This is a get me the fuck out of Phoenix for the day that he died/his birthday. Vacations will never exist in my world again. We made it to our destination and I hate the reason that we are here. But all I can continue to do is to continue to fight upstream in this never-ending battle of a current that wants me to drown. It is a constant never ending battle and on days like today, I get really tired. Days like today that consist of long airplane rides with a little 5-year-old stranger that sits right across from you in the aisle of the airplane. I wanted to say to his mom, “Hey! I have a 5-year-old too! He is right next to me. Maybe our two little boys could play together on this very long, very boring, flight to hell. Wait? You are not going to hell? I am. Because my 5-year-old is dead. So I don’t get to have him here anymore. But so nice meeting you! Have a great vacation!”

I didn’t get to say any of those things. I sat on the airplane with Quinn instead and did not even cry. I felt numb. Yeah. I scooped out some of your ashes this morning before we left. And guess what. I didn’t even cry doing this. How is that possible? Because I am that strong? No. It has nothing to do with strength. It has everything to do with this being so unreal to me, that it is not real. I often leave my body when I have to do things like this. I leave my own body a lot and I swear I float above, watching the girl below scoop out her child’s ashes of his urn while not crying. Sometimes it’s the only way to get through this. I don’t know how I’m going to survive these next days coming up but what choice do I have? Your brothers are happy. Your brothers are excited. I am trying my hardest to act happy and excited too, Ronan. But everything is screaming that this is all so wrong. Everything is screaming to get me as far away from this fucked up world as possible because there is nothing right about any of this.

This is all for tonight, baby doll. This is all I can do. I’m so sorry. I love you. I miss you. I hope you are safe.

xoxo

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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A promise and a baby lizard.

 

Ro baby. Hi. Hola. I cannot believe you are not here. I cannot believe you are really gone. I hate this so much. I’ve had a lot going on. I’ve done my hiking everyday or every night just like I said I would. I’m proud that I’ve stuck with it and have not missed a day. Even on the days that I have not been feeling well or have been too sad, tired, sore, or it’s too late. I don’t care. I have made myself climb that mountain, every single day. I have no excuse not to. I broke the most important promise in the world to you, which was how I promised to save you. I’m not breaking this one. I will spend the rest of my life, fulfilling the promises I make to you. It’s one of the things I take very seriously in this oh so insane life without you.

I had  a board meeting yesterday. It was productive and fast. We are getting a lot of things done. I made it through yesterday by the skin of my teeth and a very long, hot hike. I’ve slept the past 4 nights without our little frienenemy, Ambien. Yay me. My sleep has been horrific though. So many intense nightmares. I cannot even think about them without being sick. A lot of them have to do with you being tortured and I cannot get to you, in time to save you. I wake up scared and sad but I’m back to fighting off having to take Ambien. I don’t like taking any kind of prescription sleep aids. I’m back to trying to suffer through sleep, without their help. Dr. Jo is happy about that. I am too.

I spent today running around, getting things done. It seemed everywhere I went, I was surrounded by babies. It was weird. It made me really sad and miss you. I met Rita for lunch. I was waiting for her and I texted her something like, “Fucking babies everywhere.” She said we could go somewhere else. I told her no. That I would just ignore the babies. She got to the restaurant. I think she saw the look on my face as sweet innocent baby #1 was right behind me. She sat down. She looked at me and goes, “Oh my god. Whatever you do, DO NOT TURN AROUND. They just took their baby out and it is a lizard. It’s not even a human. They had a freaking lizard for a baby and it is disgusting.” I started cracking up. The baby lizard story continued for a few minutes while the laughter escaped my lips. It was a really, really, good story. I almost believed it. That Rita of yours, knows just how to make me giggle when I need it the most. #Thankful (hashtag, right Rita?)

After lunch I ran to see Dr. JoRo. We sat in her office and hashed out what has been going on. I cried. A lot. She asked what we were doing, this time last year. I told her. She asked me if I had written it down. I said I am pretty sure I had written a blog entry. She asked if I minded if she looked it up, from around this time, last year. I told her I never re read what I wrote, but sure. She found an entry. She read it out loud. She had to stop a few times, to compose herself. I just sat quietly and let the tears slide down my cheeks. I closed my eyes and pretended like I was listening to someone else’s story. Please don’t let this be about us. Please don’t let this be about you. I begged. I pleaded. I opened my eyes. There your little obituary sat on the same place it always is. Right in the middle of her desk. This is our story and it fucking sucks. I don’t care what good comes from this, Ro. All I want is you back here with me. More than anything.

I’ve been making plans though. Plans for your birthday, plans for our trip, plans for summer, plans for this marathon of madness. Lots of plans. Lots of plans that I don’t want to make but what choice do I have? I have to do these things for my sanity and for the sake of your best brothers, who deserve to have as normal as a summer as possible. I saw your Sparkly. I had your GiGi with me when I saw him.

“Why are you carrying that around? I’ve never seen you do that.”

I had it draped over my neck.

“I need it today. It smells like him. I take it a lot of places. I just don’t pull it out in front of you.”

He gave me that curious/sad look that I get a lot. We chatted about some things that have gone on/are going on. I sat quietly and let him talk. Sometimes I need to do that. Sometimes, I don’t have much to say because it’s all I can do not to choke on my tears. Sometimes, it’s just good for me to sit back and listen. He may have told me sometimes he wants to ring my neck due to certain things that tend to just come flying out of my mouth. I told him I knew. I apologized for my non existant filter that does not exist around him. I asked him what was I supposed to do? I told him to stop telling me I was going to be fine because that is what he is always telling me. I finally got him today, to admit that I am not going to be fine. He told me today, “I know you are not going to be fine. I’m not telling you this ever again. I am going to tell you what I know about you and that is you are going to survive this. You will survive.”

I buried my face into your blanket. I spattered out the words, “May. How am I going to do May?”

“You know how you are going to do May? With Ronan. Ronan will get you through May. Nobody else. You have to trust that. He is not going to let you down. He is going to get you through May. I promise you that.”

I looked up, my eyes burning with tears. I quietly said, “O.k.” and nodded my head. I trust his words. I trust you. I have to, Ronan. I just wish I didn’t have to. I just wish I had you back here with you trusting me, because that’s the way it should be. It should not be like this.

I fell asleep, baby doll. I miss you. I love you. I hope you are safe.

xoxo

A tutu, mustache wearing, dance party, hike with a little badass Bee

Ronan. I cooked the eggies this morning. And the sausage. And bacon. Fruit. I had croissants that Rita gave me last night, but I forgot to take them out of your daddy’s car. They were the kind that are frozen and you leave them out over night, to rise. Your daddy called me this afternoon. “Did Rita give you croissants or something last night?” “Yeah! I can’t find them!” I said. “They are in the back of my car. They are rising as we speak. I’ll run them home for you.”

I chuckled. Grief brain. What an asshole it is. I cooked them anyway for your brothers. They were an awesome afternoon snack for them. I felt like a good mom for not burning them. I played baseball with your brothers, too. I tried really hard to be a good mom today. I’m exhausted from it all. It was a long day of missing you.

I ran around and got some things done this morning. I met up with Mandy Bee. She has been gone a lot so I have not seen much of her. I miss her and the ability she has to make me forget about all this pain for a bit. Even if it’s only for a few hours. I told her I had to get my hike in for the day. She offered to come, even though she had already done some crazy work out early in the morning. I told her I would love for her to come with me. We both decided that we needed to hike in our tutu’s today. We ran to her house and got hers and then met back up at our house. We drove to the mountain and went on probably one of the best hikes I’ve had since you’ve been gone. We bolted up the mountain for 90 minutes of pure craziness. We went on a different trail with music from her iPhone blaring, and we full on had a dance party the whole way to the top. I laughed. I wore my mustache sunglasses. I didn’t cry hiking that mountain today with Mandy Bee. I got lost in the world that she creates for me which is either really, really sad when I need it to be. Or else it is really, really happy. In the craziest way possible. We looked like we were nuts today. It felt good to look nuts and not in the way that I normally look hiking that mountain with red eyes and black mascara running down my face. The break from that was much needed, especially after last nights heavy-hearted hike. I know I desperately need more days like today where I am able to laugh and let go. They don’t come very often but when they do…. watch out. They make me feel like I am on top of the world with you right by my side, holding my hand. My best days always remind me of you.

I did not decide on our trip today. I am procrastinating in a big way.  I deserved today. I just could not deal with the pressure of making any big decisions about fucking May. Maybe tomorrow.

Short post tonight, baby doll. The little sleep I had last night is hitting me. I miss you. I love you. I hope you are safe. G’nite. Sweet dreams

xoxo

Scrambled Eggies and a Fucking AIMS Test

 

 

Ronan. The weekend is over. I guess it was busy. It’s late now but I actually just got home. This weekend went a little something like this… A baseball game. Dropped your brothers off for a sleep over at a friends. Your daddy looks at me as to say now what? Because another date night of me staring across a table at him, sobbing so hard that I cannot eat and I will blow my fucking brains out. Luckily, we had made some kind of sort of let’s do something with Danielle and Dave, plans. We went to dinner. We caught up. We went bowling. I may have sucked really bad the first game. I may have gotten the high score the second game and redeemed myself. I may have smiled. I still felt sad, but it’s good to be with friends like Danielle and Dave. They are easy. They both love you. Sunday, your daddy went into the office. I picked up your brothers. We all then went to this place called Mike’s Big Breakfast for lunch. Oh, how you would have loved it. This was all I could think of the entire time we were there. I think Liam ate 10 pieces of bacon. And pancakes. We sat at the bar. Everyone smiled at us. It felt weird to me. I wanted to scream out, “Hey! No smiling allowed! We are not the happy family that we may look like! Don’t you know our Ronan is missing? Don’t you know our Ronan is gone? I just want him back! Why isn’t anyone bringing him back?!! But this food is really fucking good.” And I don’t even really like food anymore, so that’s saying a lot. Unless it comes in the form of Airhead Extremes Candy. Or Coke. I will love those two things, forever. Your brothers went over to a friends’ house later Sunday for another play date. It’s good for them and helps out over here so much. I can use the break and so can your daddy from the constant parenting that we are always doing. Parenting that is so exhausting when you are constantly dealing with this pain and grief. Your daddy asked what I wanted to do. It was so sunshiny and nice out. Shiny mother fucking people everywhere. Put me in a dark room please and let’s watch “The Girl with the Dragon Tattoo.” That’s what we did. I had already seen it. Your daddy had not and I knew it was right up his alley. It was while watching this movie, that I found out about our little friend, Jaiel. The 16-year-old girl that I had told Rita about around a month or two ago, who was fighting Neuroblastoma. The girl that was the reason that we decided to go to the anti bullying press conference that Nicole Stanton had because Jai had posted something about how it was nice to know that people who you thought were your friends, really were not because they were all just waiting for you to die. Her post ripped my heart out. She is 16 and she is dealing with real life in the most horrific way. She does not have normal you are so fucking lucky to only have a boyfriend breaking up with you problem, to cry about. This girl was fighting for her life. Something that  so many people, take for granted.

Somebody posted something on Facebook saying she had passed away yesterday. Impossible, I thought to myself. I had just been messaging back and forth with her a week or so ago. She had just had another surgery, so she could continue to fight. I thought she was doing o.k. I should have known better. Because I know first hand, how evil and unpredictable this disease can be. I sat in my bed, in shock. Your brothers came home soon after that. I had to keep it together for the sake of them. Your daddy asked if I wanted to play outside with them. “No,” I quietly said. I would not. I played catch out in the parking lot today of Matt’s Big Breakfast. That’s enough for today. That’s all I can do, for today. Unless Ronan is there too. Then I would like to play. You were not. So I left. I went for a very dangerous, night hike instead. But before my little hike, this is what I did. I parked. I sat in the car and sobbed. I sobbed for Jai. I remember thinking to myself poor Jai. And her parents. I cannot imagine what they are feeling. I cannot imagine what it feels like, to be them. Then I had visions of your little face, your little voice, your little lips and how lucky I was to be able to have all of those things. But then I remembered that you are dead. I had forgotten. My head started spinning and I thought I am never going to see him, again. At least not in this life. How is that even possible? How can this even be real? I bolted out of my car. Luckily, I had decided to wear my FUCK YOU YOU FUCKING FUCK tee-shirt while hiking up the mountain today. I do not think my fellow hikers appreciated it very much. The amount of dirty looks I got was actually quite humorous. Quite a few people gave me dirty looks. I gave them dirty looks back while the black tears poured down my cheeks. I’m pretty sure I looked mad. Like in a Mom’s Gone Mad sort of way. I’m pretty sure I didn’t really fucking care today. I am glad nobody said anything out loud to me because I might have punched them. Maybe not punched, because I don’t do physical violence, but I totally would have assaulted them with my middle finger instead.

I came home and your daddy just looked at me. I had snuck out of the house without him seeing what tee-shirt I was wearing. Score 1 for secret operation ninja Maya plan. Score 0 for OH MY GOD NO YOU DID NOT WEAR THAT Woody. I did. And I’m not sorry. Cancer can be sorry, for killing my child. And this is how I feel about cancer, so I’m wearing it. Plus Jai died. And all of these babes are dying, so yeah, fuckyouyoufuckingfuck, was appropriate. I don’t care who says otherwise.

This is what Quinn said to me about 10 times today. “Mom. We have an AIMS test tomorrow. Can you cook us a really good breakfast??”

“Ummm…. of course I can, Quinny.I will cook it and you will do awesome on your test.”

He asked me this, about 5 more times tonight.

I thought to myself, don’t I always cook a good breakfast before school? Then I remembered that no. No I do not. I used to. I used to ALWAYS cook a good breakfast for all of you. Your eggies. Your scrambled eggies. Bacon. Sasauge. The works. I would feed you all, scoop you up in your P.J.’s and throw you in the car. We would drop your brothers off at school and come back home to play for the rest of the day. Now eggies only really happen, on the weekends. During the week, it’s every man for himself here is some cereal and shove some yogurt down your throat if we have time. Eggies pretty much kill me, without having you to feed them too. Tomorrow, I will cook eggies on about the 4 hours of sleep I am going to get tonight. Tomorrow, I will get up extra early to cook the eggies without you. I already hate tomorrow.

This is the other conversation that has gone on for months now. May. May consists of telling your daddy, I think we need to go away.  I do not think it would be a good idea for us to be here, in May. Your daddy wants to know, where I want to go. China. Thailand. Vietnam. Australia. I think it may be a little late for those places. I don’t think I can plan a trip like that. I cannot make a decision to save my life. Why can’t I plan a freaking trip? What is wrong with me? This is easy! Turns out, it’s not so easy. I think I am having major mental block out May issues. If you block out May, it won’t come. It’s coming. I cannot be in Arizona for it. East Coast. I think it’s going to be an East Coast trip. I told your daddy this tonight. Maine? Boston? All of it? “Whatever you want,” was his reply. Just please plan it. Fuck. A plan? How can I plan this let’s get the fuck out of here, because Ronan’s 1 year of everything is coming up??? Because if I do not, I know what will happen. And it is not good.

I tucked your sweet brothers in tonight and sent Rita a text. “Hey. Do you have HBO? I do not. And “Girls,” is premiring on HBO.” It’s our fairy RoMo’s good friends show. I don’t watch T.V. but I did tonight due to Rita’s response  that she did indeed have HBO and she lives close by. We sat and watched, laughed, and LOVED it. I stayed over there late. We talked about May. She has been trying to help me make a decision for weeks now. I’ve been ignoring her. I thought she was going to fly off the couch with happiness when I said, “I’m thinking East Coast…” She seemed to think that was great idea. Maybe tomorrow will be the day that I can make your daddy proud, by figuring this shit out. Maybe tomorrow is already here and it looks bleak. We shall see.

Eggies to cook in the morning, Ro. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

There’s Beauty in the Breakdown

Ronan. Did I say that I was in solitude last post? I think I remember something like that. Grrrr…not happening. Turns out, if I really want to go into deep hiding, I’m going to have to abort cancer fighting mission. And that’s not happening. I think I wrote to you last on Monday. Your 11 months fucking shitty asshole day. The week has flown by and I’m not even sure what I’ve done. I’ve hiked every single day, since I started my Inferno Hiking Challenge. It’s kind of sort of, AWESOME. I guess that’s where I’ve done all of my quiet time/solitude. Turns out, I really may need to go to India to a Buddhist Meditation retreat to get some serious solitude time. I don’t have time for that though, so the mountain will have to do. I’ve been thinking about your birthday, a lot. More so then your death day. I have a few ideas about what we will do. I think I remember thinking on Tuesday, as I was flying down the mountain, that Tuesday was an o.k. day. It was the first day in a long time that my head didn’t feel foggy or weighed down. It was the first day in a long time that I thought to myself, alright… this is easy. You can totally do all of this. This meaning the 1 billion ideas I have roaming around my head in regards to you/childhood cancer/bigger picture/cancer is an asshole plan. The hiking and being outside with nature seems to really work for me. That and Dr. JoRo go hand in hand with saving my life. I’ve been doing alright without her here. The best that I can do. I repeat a lot of her words in my head and try to make myself be mindful of every single thing that I am feeling. She’s been checking in on me a lot and I actually went down to the MISS office on Tuesday where I sat in her office to get some shit done. Thanks, Yasaman and Kathy for letting me crash the place for a bit. I was able to be productive for a few hours and it felt nice to get some things checked off of my never-ending list.

I’ve been spending a lot of time with your brothers. They had a friend over this week to play. It was nice for all of us. I miss doing things like that with them. I miss the days when play dates ruled our world and cancer did not exist. I took them swimming and I allowed myself to get lost in a book for a bit. I never read anymore. I’m starting to do it a little more of it. I have to try for my mental well-being… I’ve been a reader since before I could freaking read. It’s always been a part of me. For as hard as it is for me now because my concentration is shot, I really want it back in my life. Your daddy asked me a couple of weeks ago if I ever thought I would start to read again. He said to me, “Remember when you used to read a book, in a day?” Yeah, I remember. I remember a lot of the things I used to love to do that I just don’t do anymore. The self-torture is never-ending around here. I don’t like to do things that make me feel good. It does not feel good to me to feel good anymore. It just comes with a ton of guilt/demons/you should not feel happy about anything because you are gone. Even the one thing that makes me feel o.k. like exercising, comes with a heavy price tag. Don’t think I’m not beating myself up on that mountain to make myself physically feel the pain because I am. I am constantly telling myself if it doesn’t hurt or I’m not puking, I’m not trying hard enough. That nothing is good enough. I couldn’t save you, so why the fuck should I save myself? I know why. UGH. For as much as I don’t want to, I do know why. I see the shreds of happiness you leave around. I feel like I am holding on to them as tightly as I can. I’m trying my hardest not to let go, Ro. I am trying.

I had a board meeting last night. It lasted almost 5 hours. It was beautiful. It was painful. They always are. Nothing beautiful in this world, comes without pain. It’s just they way life is. But once again, sitting in that room with the loveliest little souls alive, I felt blessed. And thankful. They all love you so deeply and so much, that it sometimes leaves me speechless. We talked about a lot of foundation things. We talked about your birthday and death day. At one point, I had no choice but to put my head down on the table and sob. I was trying my best to be strong, but when it comes to talking about your one year shit, there is no being strong. There is no need to be. Especially in a room full of them. I cried. I told them all how nothing seems good enough. I told them all how I have been racking my brain, just waiting for something to come to me, to honor you. But it’s not happening. This is what I have for May, Ronan. The day you died. Your birthday. Mother’s Day. The day we had your funeral. Your Daddy’s Birthday. I mean, really world. Could you throw one more thing in there for me to deal with. May is awful. May is horrific. I wish I could bypass that month all together. I know I have to get a plain in place, otherwise I’m going to be fucked. If I don’t have a plan, May will spiral out of control. Nobody can save me from May. It’s coming and there is nothing I can do about it except try to take the days that I know are going to be the hardest, and try to deal with them, head on. What choice do I have? I can’t bury myself or slit my wrists. I just won’t. I promised two very important people this. I’m not breaking my promise to either one of them. I love them too much.

Babydoll. This is all I can do tonight. It’s late. I’m tired. I have a busy day tomorrow. I have a busy day, but I’ll still get my ass up on that mountain, to have some time with you. I love you. I miss you. I hope you are safe. Sweet dreams.

xoxo

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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A barefoot hike and a spicy little dragon

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

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

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

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

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

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

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

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

xoxo

A maybe baby

Ronan. How can I be this upset over something that I was not sure that I was ready for? Because I had spent all last week preparing myself for it, just in case I was right. So, my emotions went from, oh no I’m not ready…. to o.k. if it is so, I can totally be ready/do this. I let myself feel sad/happy/scared/excited. I had myself convinced I was right. Turns out, I was wrong. Turns out, my body/hormones are completely out of whack due to stress/sadness/not having you. I’m not an out of whack person. My emotions stay pretty even keeled, even while dealing with not having you here anymore. I am a pretty level-headed person. This whole thing has kind of thrown me for a loop. I spent the weekend giving into my tiredness. I was nice to myself which I tend not to be anymore. I spent all weekend hanging out around the house doing all the old things we used to do with you. It’s normally hard for me to be in our house, but over the weekend I really enjoyed doing the simpleness of not much, with your brothers and daddy. I enjoyed all of this due to the maybe baby that I had gotten used to.

Then Monday came. I woke up so exhausted again. What is going on? I am sleeping fine at night without Ambien. I only wake up once and that is always at the 3:25 a.m. time that I swear to you, is your way of trying to get to me. After I wake up, pace the house, toss and turn, cry, sometimes not cry, I fall back asleep. I’m pretty sure I am getting in a good 6-7 hours of sleep. That’s a lot for me. The blood test I had done on Friday, came back negative. As in, you are totally not prego. O.k…… I thought to myself. So strange, my intuition/being in tune with myself is usually pretty accurate. Within moments of this phone call, the tears started. Wait… why am I crying? I thought to myself. I didn’t give myself much time to rationalize all the reasons why because clearly it was out of my control. So I cried. I called my Little M who I can always count on to make things sound logical/rational for me. I was sobbing so hard she couldn’t even understand what I was saying. After about a 20 minute conversation this is what we figured out.

1) Deciding that I/we, want/hope to have another baby, is mentally exhausting in itself. It’s taken a lot of work for me to get to this point.

2) I don’t get to be a normal mama ever again. Everything I do comes with heightened emotions. A maybe baby included. This is a whole new me for me. I’m usually so very calm about things.

3) This would have been nice because it would have just been something that pretty much just happened, not something that we really tried for.

4) I had my hopes up. I allowed myself to get excited… I allowed myself to think about the future, which I often don’t do. Most days, I am just trying to get through the day. I thought I would be o.k. with the maybe baby not being real, when in reality, I feel disappointed and sad. I guess I wanted it to be real, more than I thought.

5) This maybe baby, wasn’t meant to be. Or as Marisa said, this wasn’t meant to be your baby. There will be a time, this will all work itself out, when it is meant to be.

I stopped crying after I hung up with Little M. She made me feel better, like she does with everything. She even through in an “I’m sorry and can somebody just throw you a freaking bone?!” I don’t know if they can or not, but I’ll sit here and wait.

I spent the rest of the day crying/talking to myself and you. I went hiking. I talked to you out loud. I didn’t listen to my blaring music like I normally do. Dr. JoRo asked me to hike quietly. I listened to her. I told you all the things I always tell you, like how sorry I am. How much I miss you. How sometimes I don’t know how I’ll do this all, without you being here. I talked to myself about how I need to stop trying to control things that are not in my control such as life and death. I need to respect that I am not in control of certain things and when they don’t go my way, I need to just give into that and not beat myself up about it. I talked in my head about the logical aspect of all of this/the lesson learned/what I hoped to gain for the future. I tried my best to rationally play everything out in my head. I heard the screaming voice yelling at me that all logic flew out the window when you died. I tried my best to ignore that voice. I ran down the mountain as fast as I could go, wiping the dirty tears off of my face. I told myself things like, “You are o.k. you are going to be o.k. you have survived the worst thing possible, you can get through anything.” I gave myself a pep talk. I came home, showered, and picked your brothers up from school. I played the good mommy role that seems to be coming easier to me now. We did their homework, I fed them a snack, and we did an art project together. I made a big fuss over how proud I am of both of them, which I didn’t even have to force. This shows me I am healing a little. The things that used to take a ton of effort, are falling back into place a little more easily.

I’m still completely wiped out. I gave into all of this last week, but I am fighting it this week. I’ve got too much to do and I don’t have time to sit around and being tired. I am hoping I will get my energy back up, otherwise I’m going to be seriously worried. It may be my body’s way of remembering what is coming up in the next month. What my mind is trying so badly, to ignore. I don’t want the day you died to be here. I don’t want your birthday to be here, without you. I know I have to face all of this/make a plan. I will work on that this week, but no promises.

I told Rita I was blogging about this. I know it is a lot. I feel like I live on a freaking soap opera and I don’t like it. Although this is pretty personal…because I get the baby thing is personal and I don’t have to share it…but if I did not, that would be me not being true to myself/this life/what is going on, in our world. I started this saying I was in this for good. To share the good/bad/ugly/happy/sad/all of it. I couldn’t just ignore what has gone on and not write about this. That would not be fair, to anyone. You all have stuck through this with me, for this long. I’m not going to start sweeping really important things under the rug. The fact of the matter is, no matter who agrees with this decision or not… the whole maybe baby thing… it is our decision. Woody and I, made this decision a long time ago, before Ronan got sick. We both know this is something we want. We both feel like it is something that we need and would be really good for all of us. We love each other. We love Liam and Quinn. We love Ronan. We will love whatever/whomever comes in our lives next, when the time is right. We are a family that is broken, but we are broken together in the most loving, caring, happy/sad way possible. We will never be the same again and having just the 4 of us feels to wrong, to not try to make it, a little right. I’m not sure what a little right looks like at the moment, but I can tell you it’s not this.

I’m tired Ro baby. I love you. I miss you so much. I hope you are safe. Sweet dreams.

xoxo