That time I went Inferno hiking and almost didn’t make it down the mountain, because sometimes I’m an idiot who does stupid things.

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Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.

Hiking Camelback on a normal temperature day is not an easy feat.  Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell.  I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on.  I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly.  Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me.  I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb.  I had to stop quite a few times which I normally don’t do.  After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top.  I’ve never not made it to the top, so this was a first and I was not happy about it.  But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff.  I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me.  You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place.  I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly.  I started to get really disoriented and dizzy from the heat.  I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out.  I got to the part where you have to hold onto some rails to climb back down.  I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore.  I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell.  Did I want to die?  I was so out of it at that point that I couldn’t really answer my own question.  I let my mind drift and wander to those morbid places for a couple different reasons.  One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places.  I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much.  I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.

I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom.  He offered to come and get me and of course I said no.  Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on.  I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor.  I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes.  For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity.  Do you think I learned my lesson and will never do that again? You know me better than that, Ronan.  You know I’ll be back up that mountain in no time to do it all over again.  I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.

A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain.  I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail.  I googled the story and found it almost immediately.  He was 23, from Washington State and his dad was pleading for his son’s life.  I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts.  Could that have been him?  In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain.  My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief.  My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found.  It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days.  On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid.  It had been 3 days and I knew if he was up there and found, that it was not going to be good.  Still, I asked whoever is in fucking control of this life, for a miracle.  Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress.  My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about.  Please let him be alive.  Please, please, please.  I came home and checked the internet for the news.  A few hours later the updated story was posted.  A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday.  The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock.  The numbness.  The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too.  It’s been over a week and I can’t stop thinking of this kid and what happened.  I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.

I talked to some of the regular hikers after it happened.  Eric’s body was found about 500 feet below the summit.  They showed me where he was found as I wiped the tears away from my face.  The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented.  The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be.  And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die.  Sometimes I just want a break from all of this pain though.  I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.

Your brothers turned 11 yesterday, Ronan.  I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do.  I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you.  They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means.  You were missed yesterday so very much.

I’m going to run now.  It’s 4 in the morning here and I’m back to keeping the hours of a vampire.  Up most of the night and functioning on just a few hours of sleep.  It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left.  Dr. Sholler is actually going to be at our house in about an hour.  She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot.  No way I would ever take that precious cargo to the inferno.  She has too many kiddos to save.

I miss you.  I love you. I hope you are safe.

Bye, little man.

xoxo

I made a new friend and I know you are going to look after her.

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Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally.  You always bring me the rain when I am the saddest. I was up on and off through the night.  Waiting for that 3:25 a.m. time when you left this world.  I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me.  No screaming and crying fits allowed when a peaceful baby is sleeping beside you.  I sent an email to Sparkly instead and screamed and cried to him.  FUC.  I hate cancer.

Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it.  We talked a lot about life, loss, this cancer world and how wrong it is.  I like spending time with her as not only a doctor, but on a personal level as well.  I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you.  One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere.  It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.

Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.

Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.

http://www.esbnyc.com/documents/ESB_LP_Questionnaire_FINAL.pdf

Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.

It’s still pouring down here.  After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons.  Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself.  Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.

It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.

Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.

After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?

Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.

I miss you. I love you. I hope you are safe.

xoxo

 

Nela, you give me hope.
Nela, you give me hope.

A Danger Day for 15 months without you. F U Cancer.

Ronan. 15 months of you being gone and I survived today. It wasn’t even a totally awful day. I think it’s the first 9th I’ve had in a long time, that wasn’t horrific. Do you know why? Because I took today and made it be an alright day. I’ve had too many hard days this week and I just could not do another one, today. I got up with a heavy heart, like always. Got your brothers off to school. I had a plan for what I would do today on our danger day. It involved something that I have become borderline obsessed with. Something that I have done for a while, but just not often. Something that I like to do alone that fills my heart with a peacefulness that I cannot explain. Drum roll please…………..

Golf. You heard me right. Golf. Now, I know you are wondering how this might be dangerous because I’m pretty sure golf is the safest sport out there. I turned it into something dangerous by taking my golf day and tweaking it into Inferno Golf, of course! It was only 112 today. I golfed in the middle of the heat for 3 solid hours. It was glorious. You want to know what the funny thing is? I am freakishly good. As in really, really good for only having played about a half dozen times in my life, if that. I spent 3 hours of the day in the blazing heat, golfing my heart out and jumping up and down over my almost hole in one. I drove the cart extra fast, through some muddy grass and a sprinkler, just for you. I came home from my day with a smile on my face that does not happen very often anymore. I finished off the day by working on some things for your foundation. We have a lot of great things, coming up.

I ended this awful 15 months of hell without you by doing an extra fast inferno night hike up Camelback. So fast that I thought I was going to die, from not being able to breathe. I had to stop at one point and it took me a few minutes to catch my breath. I thought to myself, “Is this how Ronan felt, right before he died? Like he couldn’t breathe? This is awful. Please, I hope he didn’t feel this way.” The darkness that lives within me, tried to take over. I told myself to stop, to just get to the top,  because Ronan is waiting for you up there. I tell myself this a lot when I am physically trying to do something that is hard. That you are waiting for me so I’d better freaking finish what it is, I am doing. I know you know how much you know I wish this were true. I would give anything to have you waiting for me. I let you guide me in the ways that you still can though. I hear your voice, a lot in my head. It pushes me to try my hardest at everything I do.

This post is going to be a little short tonight. I am physically beat. I love you my spicy monkey. I called you this a lot tonight on my hike. I know you heard me.

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

xoxo

An Inferno Dark Death Hike that should have resulted in a Heart attack.

Ronan. Someone had a party in your room last night and it was not you. That would have been me and my friend, Ambien that I have not taken for weeks now. It’s funny how just when you think you are making progress with little things like a normal sleep schedule and BAM! Out of nowhere, 10 giant steps back. Where is my natural sleep remedy, your New York Miss Macy when I need her? And why does that girl always relax me so much that I sleep like a baby when she is around? Insomnia strikes again tonight as well. Good times around here.

I had a meeting this morning. I felt like a zombie. I took your brothers with me. They quietly sat at the table with us and ate their breakfast. Not a peep was made. Sometimes they are so good that it makes me want to scream, but I was thankful for it this morning. After my meeting in regards to the Sept. 29th event, I ran your brothers to basketball camp. I went by Dr. JoRo’s office to sit and get some things done. She has been letting me use it while she hasn’t been there. I think I was pretty productive but I ended up crying hysterically when one of my MISS mama friends, popped her head into the room to see how I was doing. I tried to say fine, but the tears that followed told the truth. She came and hugged me and sat with me for a while. She told me about the dream she had of you. She asked if there was anything she could do. I just told her no. That there was nothing, anyone could do. She said she knew. I left there shortly after that as I had to pick up your brothers. We came home and spent the rest of the day, hanging out. I made them lunch and tried to do all the normal things that a normal mom does during the day when she does not have a dead child. It still feels foreign to me to go on with normal day to day things. I would give anything back to go back to our cancer world where all I did was take care of you and your brothers when I could. It is such an unfair world but it is so much less cruel than this. Your daddy came home and I told him I needed to go hiking. He took your brothers to Costco and to play basketball for me. I headed up to Camelback around 6:30 p.m. It was still so bloody hot out. I hiked that mountain as fast as I could. At one point my heart was racing so quickly that I thought to myself, I wonder why my body doesn’t just give out and have a heart attack right here. I wonder if this is what it feels like? I was panting so hard trying to get up the last stretch that I could not even breathe. There was some dude behind me. Ummmm, no way was I letting him beat me. He didn’t. I won the little made up competition in my head. I fell to the ground at the top as I could not even stand. I sat there and tried to get my heart rate to come down. I was dry heaving but due to not eating the entire day, I had nothing to throw up. I know I should have been up walking about but my legs would not let me stand back up. I soaked up the bright pink sunset. It was gorgeous up there. I spent way too long at my church, but that tends to happen to me up there. I could sit for hours and talk to you. It was already dark as I headed back down. Dark on Camelback is not a good or safe thing. The trail is steep, rocky, loose gravel everywhere. I did my best to navigate my way down with the little light that was left shining from the moon. I left my headlamp in the car. I was in a fuck it all mood today so fuck it all is what I did. The headlamp did not stand a chance of making it into your little backpack. I got down, somehow. Guided by you of course. It’s the only way I get through things now. I came home, threw off my drenched clothes and got in the shower. I felt so tired that I was sure tonight was going to be an easy night of sleep. I snuggled up to your daddy. I tried to be peaceful but that did not work. I ended up throwing pillows, tossing and turning only to wake him up from his very peaceful sleep of slumber. I told him I was sorry, I loved him, but had to get out of our room. He said it was alright but I know how much he misses me when I don’t sleep in our bed with him. Maybe I’ll attempt to go back there later.

I found out something from Fernanda today. Something that she didn’t tell me but she should have told me. I am just thankful that it is you, who is watching over her and taking care of her to make sure she is o.k. I know she has been talking to you a lot and asking you to help her with some things. You are being such a good, brave boy by taking good care of her so nothing can happen to her. I need her here, for a very long time. Remember how good of care, she took of us? I won’t ever forget it. Now it’s your turn, to take care of her, o.k. baby boy. I know you always are. Thank you for that.

I’m queasy probably from the way I over did things today. I’m getting sleepy. I think I’ll go and cuddle up to that daddy of yours. Goodnight baby doll. I’m so sorry. I miss you. I love you. I hope you are safe.

xoxo

An inferno church twice in one day and still not eating Chick-fil-a!

Ronan. Geez. My little blog post seemed to cause quite an uproar. Am I surprised? Not really. I know that not everyone is going to choose my cause, which is childhood cancer, as their cause. But you know what? I can guarantee you, the people that do not care about this cause, have never been on the floor of a children’s oncology unit. If they have been, I can guarantee you this is something that they would support. If you don’t support childhood cancer, then please stop reading my blog. Why did the chick-fil-a thing piss me off so much? It has nothing to do with the Christian part of this. You all missed my point on that one. Chick-fil-a could have been run by a bunch of Atheists and I would have still been just as pissed. It has to do with the amount of money that was spent could have done some actual good in the world. How about all the starving kids in Africa? How about how they have no clean water over there, to drink? How about helping out with something like putting in wells for them, because clean water should be a right for EVERYONE. How about all the orphans in china who are born with medical needs? I know there are more problems in the world, other than childhood cancer. All I was saying, was I wish people would stop being so ignorant and donate to causes that actually matter. And no, Ryan from Chucktown, Wa. I will not be back to Chick-fil-a when as you put it, “one of my kids starts crying about wanting it.” Fuck off. My kids have a dead brother to cry about, tears will not be shed over some fucking chicken. Unfortunately, they know what the real problems of the world feel like.

Ronan. So yesterday was a day spent with your brothers. Quinn was still not feeling 100% so we stayed home much of the afternoon. I called to get him a follow-up with the Neurologist just to play it safe. I took your brothers swimming for most of the day. Those two are so intertwined now it’s if they are the same person. This is good and bad. Summer is hard because it is the town of them, constantly together which means a lot of arguing, fighting, but love as well. I was swimming with them yesterday and they would not get off of each other. They were kind of play fighting but kind of real fighting, too. I was doing my best to let them do their thing, without letting things go to far. At one point I just looked at them and said, “Geez. Where is Ronan when we need him. You guys’ really needed him to keep you from doing this, 24 hours a day.” It is so true. You broke up our family dynamic so much that you made everything perfect, special and just the way it should have always been. You were the in between fun that your brothers so needed and so still need. They were always so happy to be entertaining you, that it seems like a lot less fighting between the two of them, occurred. This always makes me sad to sit back and watch or think about. I know the everyday normal of our days, would have been so different with you here. I imagine them a lot. How your little life, changed our family so much, for the better and not having you here now makes everything feel and seem so wrong. Even a simple day at the pool.

After a day with your brothers, your daddy got home and I told him that I really needed to get out of the house and go hiking. He was fine with that so off I went. I hiked up Camelback as fast as I could. I found myself trying to fight off the heat and wanting to stop. I heard myself in my head saying, “You don’t get to stop, Ronan is at the top.” Over and over again. I didn’t stop. It did not matter that it was over 100 degrees outside. I passed people left and right, pushing myself further and further into my inferno of Hell. I sat at the top for a long time. I stayed at my church, for over an hour. I decorated a tree with your bracelets. I watched the sun start to finally dip down below the mountains surrounding me. I watched them and felt myself filled with a peacefulness that I seem to find in that little church of mine. It was a good hour of just sitting and being with the world that I don’t do enough of. I got up and headed down. I got a text from Rita saying she needed to exercise and was thinking about going night hiking. Holla!!! Count me in! I told her I had just come off of Camelback, but I would climb another mountain with her. She said, “Haven’t you already hiked today? I can’t let you do that.” I told her nonsense and to hurry her ass up. I met her at my other favorite mountain for some badass, totally dangerous night hiking. Well, it might have been had we not both had headlamps on. I think that kind of took the danger out of it. It was super peaceful and serene. I was proud of myself for going to my church twice in one day! I think I really needed it yesterday.

It’s early morning now. I have much to do in the name of cancer fighting business. But first and foremost, I can hear your brothers starting to stir, so breakfast must be made. I miss you. I love you. I hope you are safe.

xoxo

1)Dying 2)Depression 3)Pregnancy 4) Mental Ward 5) Let’s just go to Mexico!

Ronan. If I am not pregnant, I think I am severely depressed. I told Rita this tonight. I don’t know what it feels like to be depressed, because I never have been. I’ve been traumatized over losing you so badly that I can’t function, but I would not call that depressed. I would call that just a mom, who has had the worst thing that could possibly happen to her, happen. And then you are left, feeling blind, deaf, dumb, alone, abandoned, shocked, scared, numb, tormented, miserable, heartbroken, physically ill, and like you too, would like to die. You are left thinking the pain alone, will kill you. But it does not. So you get up, somehow. I’m not sure how, but you do. I did. I feel like I have been moving on a high-speed train for months now. Doing so much, but it all felt good. Doing good things/being productive is what is saving me. Doing all of this while still respecting this pain. The high speed train has come to a halt. I am so freaking tired. I worry that it is because I have done so much/too much and now your 1 year since you’ve been gone is approaching. Your 5th birthday is shortly after too. I am going to freak out if I am this tired, and it is not due to being pregnant. This is so not like me. I don’t get tired. I run off constant energy and adrenalin. I can do 50 tasks at once, while hiking Camelback, blindfolded, juggling apples behind my back. Not this past week. This is not the flu or step throat or anything like that. This is something more. It’s either I’m really, really sad…. or pregnant. If this is what depression feels like, HOLY FUCK. It is scary. I do not enjoy this. Rita says if I am not pregnant, then we will be doing a lot of night hiking. Good solution, Rita. Seriously.

There are some things in life, that I am asked to do, and I just cannot do them without you. In my old life, I would have said yes in a heartbeat. In this new life I have learned to say no. There are certain situations that I know I can mentally/emotionally not handle. So, I have started to say no to things that I know will be too painful for me to do. Your daddy is so supportive of me and the way I am doing this. He knows when he comes to find me in the shower to ask me if I am ready, and he finds me crying hysterically saying, “Please, I cannot go without Ronan. Don’t make me go without him!” He knows not to make me. He just looks at me, kisses my forehead and tells me it’s alright, that I do not have to go. This is one of the 10 billion reasons that I love him so much. But I would still kill him if it meant I could bring you back. You see, RO… why couldn’t I have just left it at being one of the 10 billion reasons I love him so much? Why did I have to throw that killing him for you thing in there? Because that’s how my mind works. It’s kind of dark and twisted, in a pretty way. At least I think it’s pretty. But I am a sucker for a dark and twisted mind. I think they are the best minds to have.

I wish I had more to say tonight. I honestly don’t think I left the house all weekend. I’m feeling that crummy. I met Rita at Trader Joe’s. We Robombed the place with your little cards. That was the highlight of my weekend. Well, that and snuggling up to your brothers while we watched oh so bad but oh so good, 80’s movies. Ummm… hello, “Licence to Drive.” Top 5 fav 80’s movie of all time. I loved those Cory’s. Quinn cracked up at it. Liam thought it was stupid and actually went into the bedroom with your daddy to watch, “Storage Wars,” or something. He is obsessed with that show. Those brothers of yours… they are so stinking rad. I am so lucky to have them. I was so lucky to have you. I’ll never understand why you had to go. I miss you so much.

I’m sleepy, tired, and sad. I love you to the moon and back. I’m so sorry, Ronan. I hate this for all of us. I hate this most of all, for you. I hate that you are not here, and I don’t get to take care of  you. This destroys me. This is so not how things should have to be. I hope you are safe. Please be safe. I love you to the moon and back. Sweet dreams, baby doll.

xoxo

Special Delivery of a red colored Slurpie! Because LOVE should not come with a label.

Ronan. Today was a very busy, important day in this new, oh so strange world without you. I dropped your brothers off at school. I came home, allowed myself to crawl back into bed for 15 minutes where I sobbed about you, got up, showered and got ready for the day. Becca had invited me to sit at her table at the We Stand Behind Planned Parenthood luncheon. You know how I feel about the whole luncheon thing… too many people… anxious feelings…not ready for the real world yet… but Becca asked me and for her, I would do anything. Plus, I do stand behind Planned Parenthood, so I was actually looking forward to going. It was empowering to be there, standing up for such an important cause. Standing up for what they believe in, which just happens to be, what I believe in. I am proud to stand behind this organization. Please do not bombard my blog with your opinions on this subject. You won’t change my mind. I hope you all know, just because I talk about some things I stand behind on here, I do not expect you all to agree with me. Agree to disagree. I am totally o.k. with that. It’s what makes us all unique, different, and as human beings and we each have a right to this freedom. This is what Planned Parenthood, believes in:

1. We believe all individuals have the right to make informed, independent decisions about sex, sexual health, and whether and when to have a child.

2. We believe everyone has the right to safe, high-quality, affordable health care – including the full range of reproductive health care.

3. We believe everyone has the right to comprehensive, age-appropriate, medically accurate sex education.

4. We believe in commonsense policies that promote women’s health, increase access to affordable birth control, and protect the health of young people.

5. We believe in U.S. foreign policy that improves the sexual health and well-being of individuals and families globally.

I support that. I support them. That’s the bottom line. I also get that some people do not support them and all I have to say is, to each their own. I have a personal relationship with Planned Parenthood. When I was in college, when Woody and I were NOT trying to get pregnant with the twins, when I thought, “Oh shit, I think I am pregnant!” just after we were newly married… I went to them for a pregnancy test. I was so young, scared, and they made me feel safe AND it was affordable. Plus, it was right down the street from our condo. I also always got my birth control from them. They had my back at that time and I’m a very loyal girl. Enough said. And please, do not be so ignorant to start spewing shit about how I believe in abortion. I DO NOT BELIEVE IN ABORTION. But I do believe in a woman’s RIGHT to CHOOSE. There is a difference. I do not believe old men in suits have any business telling a woman what she can or cannot do with her body.

Before the luncheon, Becca and I made an executive decision (because we are so official now) to run down to the Capital, to show our support for Nicole Stanton’s press conference regarding SB 1462, the anti bullying bill that would have protected the rights of ALL children in our Arizona schools. A bill that will protect ALL of our children, one day very soon, I have no doubt about that. From the little time I’ve spent with Nicole, I have no doubt that she will get this bill passed and it will be placed in all of our schools, just as it should be. I cannot get started on what I think about Cathi Herrod, the lady responsible for killing this bill. That would take up this entire blog to you, Ro and I just don’t have it in me. I don’t want to get started on this, but I can’t stop myself tonight. She pisses me off. She is clearly a pro bullying, racist, homophobic, mean lady. Whom I would really like to take home with me and have her sit down and watch all the episodes of “Glee,” with us. I don’t even watch T.V. anymore, but I would welcome her in for a little slumber party of sorts. We would sit, eat popcorn, drink sodas, and watch every episode of “Glee!” I might recruit Mandy Bee to dress up like a ninja and douche her with a red colored Slurpie like the bullies do on the show to the kids who are “different.” Crap. But then that would be bullying I guess. So let’s not do that… but it is sort of fun to imagine! It is soooo totally fun to imagine. Can you get arrested for something like that? Like if you did it in a public place?? Just sayin… Bucket list, Rita… bucket list.

Cathi, honey, darling… I hate to break it to you, but the gays and lesbians of the world, are not going anywhere, nor are they hurting anyone. They are people, just like you and me. So are the little cancer babes with bald heads, scars, some who are paralyzed now from this awful bully of unfairness called childhood cancer. Go get angry about something that is really harming children, everywhere. ALL KIDS HAVE A RIGHT TO BE PROTECTED. Childhood cancer is something to protest. Not a simple thing, like people just being who they are, and being treated poorly for that. THAT IS SO WRONG! I think I would like to meet with you lady. I have a few bracelets and a little story you might need to read. It might make you change your mind about all the stupid shit you are fighting for, which in the reality of this hell, that I live in now… just does not matter.  Fighting so hard against people’s sexual orientation, is so fucking stupid, that it angers me! What a waste of time and energy, to put into something that is nobody else’s business! When will this world wake up and start fighting for things that actually matter? I have a dead child. I think I win! Nothing else is worse. I have a dead child because of lack of funding/passion/awareness/stupid fucking politicians with the egos the size of china who clearly DO NOT CARE ABOUT DEAD BABIES WHO ARE KILLED BY THE NUMBER ONE DISEASE KILLER, IN FREAKING AMERICA! But who are more concerned about my son, sitting next to another boy in school that maybe likes to wear pink and sing show tunes! PRETTY SURE I WOULD HAVE CHOSEN TO BE MORE PISSED OFF OVER THE FACT THAT MY SON HAS A DEAD BROTHER OVER CHILDHOOD CANCER, YOU FUCKING MORAN! I’m pretty sure I would not be pissed off that my son might actually make a really good friend who could teach him how to sing/dance/love/be true to who they are/who they should have the right to be, without being bullied about it. It’s called LOVE. And that is a beautiful thing no matter what shape or form. I think I would like to go line Cathi’s driveway with a bunch of fake, bloody, beaten up, bald, dead, not dead, but hooked up to chemo-polls, babies and kids. I think I could make her change her mind-own up to her stupidity and apologize. You should be ashamed of yourself, Cathi Freaking ASSHAT Herrod(new favorite word, thank you very much FAIRY RoMo) You pretty much, make me sick. I don’t know how you freaking sleep at night lady. But I’ll bet it is a very cold bed. My bed is only cold, because my sweet baby boy, who used to sleep in it, with me… is dead. But thanks for keeping my twins safe at school by trying to keep everything so black and white. No coloring outside of the lines, right?? Thank Ro, I have the right to teach them how to color way the fuck out of the lines, at home. You can’t take that away from me.

Ro baby! Sorry for all my political rants! I did not mean to take time away from you. Ending that now. Back to you, to me, to us.

That was yesterday. This is today.

I’ve had a whirlwind of a week. I have been so productive, so positive, so channeling this anger into motivation… I knew I was going to crack. I kept it up, all week long. I helped others. I begged for some things to change to some very important people. I fought the good fight. I engaged with your brothers. I took them hiking, running, spent some real, quality time with them, went to their field day at school. I picked up the phone more when old friends called. None of this was easy. I did it all up until about 2:00 today. It was around 2:00 today, that the tears started and I could not stop them. Your daddy came home. He saw the look of sheer terror in my eyes as I stood in your brothers’ closet, hanging up their shirts. He wrapped his arms around me as I sobbed. Your brothers had a baseball game tonight. I could not go. I could not stop the tears and the thought of sitting through a game tonight, without you, was just too much. Just add it to the pile of mom guilt I feel all the time now.

Want to hear the one of the most fucked up conversations I’ve had, since losing you? It happened last night after your daddy came home from the Radiohead concert he went to. I opted to stay home with your brothers. It was late, around 11 p.m. I was not sleeping, but just quietly laying next to him. Your daddy looked at me before he fell asleep and goes, “I would let you kill me, if it would bring him back.” I didn’t even hesitate, Ronan and I said, “I would.” He goes, “I know.” End of conversation. It ended, just like that. For it being so wrong and so totally fucked up… if you can see beyond all that… it is actually really beautiful. Not that I need to be reminded, because I know it all of the time… but it just shows how much your daddy loves me too. That he would sacrifice himself, for not only you, but for me as well. To end my horrific pain. I would do the same for him, in a heartbeat. I would make him kill me, if it meant you could come back. That is how much we miss and love you. That is how much we hurt, from not having you here.

Tomorrow is St. Paddy’s day, Ronan. A holiday that I really, really love. I’m not sure if we will actually do anything, but I am totally rocking one of my most awesome tee shirts for it. (rude comments need not apply)  If you were alive, I would totally let you rock this in a kid size. How freaking funny would that be! I wore this the other day and some dude told me I was too tall, to be a leprechaun. You would have been the perfect size.

I love you. I’m going to try to settle down a bit. Tricia came by and could not even pull me out of bed to hike Camelback. I never say no to that. Tonight I did. I told her there was no way I could face the shiny happy people of the world today. I know when I need a break from it all. I know when to take the day off and give into this pain. I know I can only do so much and when a breakdown happens, to just let it happen.

Your Margarita kept me laughing through my tears tonight though. She has a way about doing that. She doesn’t just make me laugh on the surface like a fake pretend laugh. She really makes me laugh. And then she throws in some sort of jab, all ninja like, that makes me feel like I am kind of awesome… in the raddest way possible;) Or she’ll make me feel like a total jackass, for some of the shit that comes out of my mouth; but she keeps me laughing while she does it. I think she’s a keeper. I think the way you left that R2-D2 guy in her yard tells me you think this too. That was pretty nice of you, little dude. Thanks for that.

My eyes are officially burning. My heart is sad. I’m going to try to forget this world for a bit by watching a movie on this very sad, stupid, I hate every night, without you, Friday night. I miss you. I love you. I hope you are safe. I’m so very sorry.

xoxo

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Here’s what I know about life. Nothing.

Ronan. You know what I know about life? Nothing. Except for almost 4 years, I took care of you almost every single day. And then from the time you were diagnosed from the time you passed away, I was so emerged in the fighting for your life world and all of a sudden it’s just gone. Just like that. And now I am expected to go back to “life.” How wrong is that? How does one do that? I don’t know. You know what I feel like? This came to me last night as I was waiting for the devil Ambien to kick in, because yes, I’m back to that for the moment. I feel like somebody has taken my body out to the Arctic Sea. I feel like I am constantly being dipped in and out of that freezing ocean. And just as soon as I am starting to defrost, I am dipped back in where my entire body is shocked to the core. In and out in and out. It’s a never-ending feeling of numbness and pain in which I have no control over. That’s the best way I can describe it tonight, anyway. Then I was thinking about the outside, non bereaved world. I’ll bet they think the pain of this is something like putting a your most favorite dog to sleep. Not because they love their kids any less, but because I think unless you are in this situation, although you may try to understand you cannot possibly have any idea of how much this truly hurts. Does that sound cold, insensitive, and harsh? I don’t mean to. I’m only trying my best to explain how deep this pain is, to the outside world. Of how I know how much they think they can understand this, but they cannot. And for that, I am glad. I wouldn’t wish this on anyone. I would never want somebody who has not gone though something like this, to truly be able to understand the pain that comes along with it. Not fully anyway. It is just too much.

This past week has been much harder than I had expected. I get that the holidays are around the corner and I keep hearing everyone talk about how hard they are going to be for us, but I’ve been doing my best just to get by. It’s only been these past few days that I have realized that I have no control over anything, no matter how strong I am trying to be. I’ve been crying non-stop. I am trying so hard to give Liam and Quinn a somewhat normal Christmas. I took them to Target and told them to pick out some things. I tried my best to put on my pretend mommy boots because they deserve to have a nice Christmas, whatever that means. But this year, when they were picking out a few things, I made them pick out some things for your friend here, Super Nate who is battling Neuroblastoma as well. They picked out a blue light saber that really lights up, a clone trooper bobble head, and your favorite, “guys helmet,” Captain Rex. I am trying my best to make sure they still get to be 8 years olds, having an 8-year-old Christmas, when all I want to do is strangle Santa and shoot the fucking elf on the shelfs head off with a machine gun.  I’ve had a talk with them about how hard this Christmas is going to be on all of us. I don’t know if what I am doing is right but all I know is I’m not going to hide the fact that this is our first Christmas without you and it fucking blows. I’ve told them this in a much nicer PG rating way though…… although I didn’t want to. I wanted to scream, kick, cuss and cry in front of them, but I didn’t. Somethings have to be done a little more gently with a little mama love thrown in. I’m running on empty but I gave it all I had. I hope it was enough.

I went to PCH I think on Wednesday or Thursday night. I can’t remember now. I went to see Nate and to give him his toys. I stayed a lot longer than I expected. He was so excited about the real light saber. I felt so blessed to be able to give it to him, from you. He let me play with him in his bed and he even let his mama slip out to take some things to her car and grab some food. I got to stay with him, alone. What a little doll. We played the funny monkey game on my iPhone but my favorite part was when I had him giggling up a storm by making his Storm Trooper bobble head eat some cheerios. His little laugh was priceless. He even let me kiss his bald head and said I could come back sometime to play. Just as I was walking out, I saw one of your favorites, playroom Kathy. She kidnapped me and I ended up staying another hour, just catching up with her. I saw some of your other favorite nurses, Kathy and Katie O. I cried when I saw them as I haven’t seen the two of them, since we were there getting your last round of chemo. I asked if you very favorite nurse, Arica was there but she was not. I told them to give her a hug for us anyway. It was nice to see them all but it made me super sad that you were not there with me. It turned into a full on party because Miss Elizabeth Blair ended up being on the floor as well, getting treatment. I got to give her a hug as well as her mommy and daddy. I left PCH feeling drained, but in a good way, I guess. I told your Mr. Sparkly Eyes that now going to a hospital to make a little boy smile feels so much better to me than sitting in a fancy restaurant, trying to enjoy something normal. Normal does not feel good. Normal does not exist. I would rather be off, doing something for someone else, than trying to pretend to live in a normal world where pretend normal dinners will never be the same. So, when I get a night out….. I would rather sit in a hospital with a bald-headed little boy than in a restaurant full of friendly faces. This is just the way it is now.

Being in our house has been really hard for me all week. Everything is making my skin crawl. Dr. Jo has been gone which I’m sure is part of the reason, I feel like I’m going to flip out. She has become my lifeline and the fact that I have not been able to see or talk to her, has been really difficult on me. Much harder on me than I thought it was going to be. I’ve been so tired from not sleeping well. I came home on Thursday and passed out for a little bit. Naps used to come so easily to me. To us. I fell asleep for about 15 minutes. It was restless and I dreamed of you, but in the worst way possible. I dreamed that I was watching you from your radiation table. You were looking at me in the eyes with such a look of trust because you knew that I was going to save you, because that is what I had promised. But than you died. I woke up to this nightmare only to find that it was indeed, my reality. It wasn’t a nightmare at all. I had dreamed the truth. So now for the past week sleep has become so painful and the days are too much to handle so I crawl into bed, begging to black out. This is where my frenemy, Ambien, has come back into play. I’m not happy about this at all. But sometimes, I need a break from everything. Including life.

I’ve been hiking and being active to try to calm down the never-ending screaming in my head. It’s not helping. I went up Camelback, late tonight, just like I’d said I’d never do again. I did. But this time, I was able to use my handy little flashlight app on my iPhone so I could see better. Thanks friends.

Ro baby. This is all for tonight. My brain is mush, my eyes are tired, and my heart is not fucking healing. I just want you back. Or I just want to be with you. I love you. I miss you. I hope you are safe.

xoxo

A Rebel with a Cause and A Death Hike

Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.

I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.

Pediatric Cancers:

Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers

There has not been a significant breakthrough in the deadliest childhood cancers in 30 years

One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers

Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials

Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.

The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable

In today’s clinical research landscape, progress is too slow and promise too rare

Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)

Basic research generally receives more funding than translational or clinical research

Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone

Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries

Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas

Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer

Conventional nonprofit organizations are not necessarily designed to progress therapeutic development

Parents are forced to become experts in their child’s treatment

With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can

To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer

Children need help now

You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.

Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.

So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.

I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.

So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.

A Birthday, Smiles, and Sparkles

Ronan. I smiled today. A couple of things made me smile and it felt o.k. I started this morning by running with Samya. I’m having a hard time, finding my love for this running thing again. I am still trying to get over that mental block that I seem to be having. I asked Samya if we could not run on the Canal this morning. She sweetly agreed to trust me and I picked out a different route for us. We ran up some hills, through some neighborhoods, and past Camelback Mountain. It was much better than the dirty, dusty, canal. After our run I came home and did the usual routine. The house was so quiet as everyone was still asleep. I hopped in the shower and went through the list of things I needed to get done today. After the shower, I was thankful for the quietness, as I had something important to do. It is Fernanda’s birthday today. I bought her the same locket necklace that Macy got for me in San Diego. I’ve had it for a while and knew what I was going to do with it. I got out the glue and spread a think layer on the inside of the locket. I took your ashes into the dining room and sat you on the table. I opened up your Urn, dipped my hand into you, kissed you and told you to please take care of Fernanda, for the rest of her life. I cried and smiled at the same time, knowing that you wouldn’t let me down. I let the locket dry, wrote her a little card and sealed it with a kiss. I felt as though you were watching me today, helping me with this decision as I know it might seem strange. But it felt right. And I have been thinking about this for a long time. She was with you, right before you passed away. I knew this would be the most beautiful, special gift to her. And it was just as special to me; to be able to give her such a thing. You know I would give her the moon and the stars above if I could. The gift of you is better than anything in this world. I couldn’t think of a more perfect way today, to let my friend know how much she means to me.

I dropped L and Q off at school with the usual goodbyes, I love you’s, see you at 3:15, please try your hardest today. They make me proud everyday. I watched them in the rear view mirror, as they walked into school. I looked back at your empty seat in the car, expecting to hear you yell goodbye to them. It kills me everyday to look back there and not see your sweet little face. I drove to Taylor’s where I told Fernanda I would meet her for breakfast. I sat and ordered a coffee and talked to the waitress about her amazing Amber colored eyes. This darling girl waits on me a lot when I’m there. Her eyes, are stunning and I always tell her so. You know what a sucker I am for pretty eyes. Fernanda soon arrived and I gave her a Happy Birthday hug. We sat and caught up before we ordered our food. I told her to close her eyes as I stood up to give her our birthday gift. I took out the purple jar of glitter that I had in my purse and started sprinkling it all over her head and told her it was from you. She was laughing, and crying, and was covered in all things Purple and Sparkly. I laughed while doing this today as I thought of you and knew how much you would have loved to be a part of something like this. I then gave her the locket of you. I cannot remember what Fernanda said, but there were a lot of tears involved and a lot of words flying out of her mouth. I get easily distracted by her beautiful Spanish accent and her words just kind of flew over my head. I know she told me that it was the most special gift she has ever received, how much it meant to her and some other things. I heard her words, but most of all, I just felt. I felt something else than pain. It may have been a feeling of happiness. Just a tiny bit. The tiny bit of happiness that I now cling to like I am holding on to for dear life. Because I am. I am holding on for dear life, that happiness will once again, be a part of me.

After I left Fernanda covered in glitter and my lipgloss all over her cheek, I ran home to take care of a few things. Lots of things. Lots of important but not really important things that fill my days. There are so many of those things now. All the things that come with the responsibility that I cannot just abandon because I just don’t care anymore. As much as I don’t care, I still have a responsibility to take care of things around here. Our house is so freaking clean and organized that I don’t even have laundry to do, Ro. Pathetic. I only wish that I were going crazy because of the millions of messes that I was cleaning up after you. You drawing on the walls, you spitting your food out across the table because you knew it drove me crazy, you climbing up the refrigerator and shoving food into your mouth, you taking a bath a pouring water all over the sides or splashing so much that I would have been drenched from head to toe. I wished for those days back, so badly.

I drove out to see Dr. Rachel today. The therapist your Daddy and I see. He couldn’t make it, so I went and saw her alone. It was good. It gave me a chance to fill her in on the life before I married your Daddy. A little bit of background. She wants to know why I’m so hard on myself. Where that stems from. She wanted to talk about the guilt that I seem to be consumed with. She wanted to talk about a lot of things but also said she didn’t want to undo any of my other individual therapy that I am doing. She respected my boundaries which I very much appreciated. I have a little bit of a guard up with her and I’m not sure why. I guess it could have to do with the fact that your Daddy and I both see her. It was glad to let her in a little bit. I would like to be able to let her in more, but I think it’s going to take some time.

Lots more to say tonight, but I’ve got an early morning run calling my name. Ro. Please help me out. I saw you on my run this morning; that little hummingbird that decided to show up, right when I wanted to stop. I didn’t stop. I hope you’ll be around tomorrow. I’ve got to get my running Mojo back if I’m going to kick this P.F. Changs Half-Marathons butt. Any extra push you can give me tomorrow would be great.

I love you to the moon and back. I miss you more than anything in the world. I am so lucky you were mine, for as long as I had you. You will change my life in ways that I’m not even aware of because I am stuck in this thick fog which you will help me out of, when I am ready. I know this. G’nite sweet boy. I hope you are safe. A million kisses to you. I’ll bet you miss my kisses so much you wouldn’t dare tell me, “IT’S NOT A KISSING DAY!!!!”

I love you, my not spicy, monkey boy.

xoxo