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.

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

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

May the odds be ever in your favor

Ronan. I’m in route back to Phoenix. I spent the afternoon with Dr. Sholler. I came here for a very specific reason. I am leaving here with the answers I wanted. I am leaving here with clearer vision of my plan. I am leaving here feeling strong, motivated, and ready to kick some ass. I have no doubt everything that I am going to do, is going to get done. I know what I am doing is a very big job. But there is no job too big when it comes to saving the lives of these kids who are fighting this awful disease. It’s the freaking least I can do. They are the one’s doing the really, really hard work. The least I can do is make it easier for them and a little less scary. The least I can do is give back to this world that I love so much now. The only world that I seem to flourish in and love. I don’t belong in any other world anymore. This is my world. I’m not running away and going back to the pretend world that I know I could have if I wanted it. The one full of pretend dinners, pretend problems, pretend complaints. Everything in life is fixable when you have your health and everyone in your family is alive and well. I don’t live in that kind of world anymore. I cannot go back to it and abandon all of this. That would kill me. This I know. This life without you is hard, Ronan. But I can live in it by trying to fix all I the problems that I see. I can live in by trying to help others going through this. I can live in it by pouring everything I have left of myself into it so I can live a new life now. This is the life I want. This is the life that I will fight for. I will make this world better for others going through it. I have people say to me all the time, “Isn’t it hard for you to be around this?” “Isn’t it hard for you to be at the hospital?” “It must be hard for you to still be a part of this world.” I usually just reply that it is not hard. That is the only world I feel like I belong in. I don’t know how to explain it. I must be crazy, right?? Maybe. But crazy feels good to me.

I know I have met my match with Dr. Sholler. I seem a lot of similarities between us. She cares about her families so much. She thinks outside the box. She’s a rule breaker. She doesn’t like the word, “No.” She refuses to accept it. She is looking at this disease in a way that most people have been too scared to do so. She knows things have to change and is here, to change them. I am here to help her in any way that I can. She is a dream for these kids fighting this disease. I am beyond sad that we did not find out about her sooner. Of course, I think she would have saved you because that is the mama in me talking. The mama in me that will forever constantly beat myself up for not saving you. I know how hard your daddy and I fought for you. I know how much we educated ourselves. But at the end of the day, it was not enough. At the end of the day, this is my fault. Will I cry the rest of my life because I believe this? Yes. But it will also be the reason that I fight for the rest of my life, too. Because I know I will make this better for the others out there who will walk this path next. Unfortunately, there is not a shortage of kids’ getting this disease. I swear I am hearing about more and more of them, everyday. I know I cannot stop the diagnoses of the kids that get this disease. But the odds of survival, need to be in their favor. Not against them. Why is this acceptable in this day and age? Who would ever stack the odds against a helpless group of kids? Greedy people, that’s who. Hello big pharma. Thank you for killing my child. I’m not going to go there tonight. I’m too tired and I have too many other things to fight for, right now. Someday, I will take them on. But not now. That is way too big of a fight for me to take on at the moment. That problem is too out of my hands. I’ve got to handle the things that I feel I can help change, now. Not 20 years from now.
This is hard for me. I don’t like not talking about all of my 50 million ideas. I don’t like not being able to write about what it is, I am working on when all I want to do is scream it from the rooftops. I promise, very soon I will do this, but not now. Right now, I have to sit in a time out, in a corner, and just be with all of this. I will know when the time is right. I don’t feel like I am there yet. Thank you all for being patient with me. Thank you all for believing in me and waiting this out with me. I promise you, it will be worth the wait.
Be thankful for the life you have. Please. Do you all know how lucky you are, that you are just readers? I would give anything to be just a reader and not the one living this freaking never-ending nightmare. I miss my Ronan so very much. The missing him does not become less as time goes on. The pain from not having him does not lessen as time goes on. It only becomes deeper and harder. I wish people would stop acting like I am doing better. Like I have just recovered from the death of my imaginary dog or something. I will NEVER recover from this. I will NEVER get better. I will change. I will grow. I will learn how to survive in HELL. I will learn how to fight harder just to breathe, eat, sleep, laugh, love, and go on. I make a choice everyday to walk on this earth. It is not a given right to me anymore. It is a choice that I decide every single day to do. It is painful, scary, sad, and lonely. But what kind of mama would I be, if I didn’t risk it all, for my child? For you, Ronan, I will risk it all for as long as you decide to keep me here. My life is yours. Your life is mine. I will live them both, for the two of us.
I’m home Ro. I hiked the inferno with your Tricia today. It was hot. It felt nice to be with her though. I miss her. She misses me. We both miss you. I missed you the rest of the day something fierce. I laid in your bed for a while tonight. I cried. I’m tired. I’m sad. But most of all, I am sorry.
This is all for tonight, my love. I hope you enjoyed your bedtime story. I love you. Thank you for being with me the past couple of days. I know you know I cannot do this, without you. I love you. Sweet dreams, baby doll. I hope you are safe.
xoxo

I didn’t kill the intern. I only made her black out and throw up.

Ronan. Shitballs. I am beat. I spent yesterday with Quinn, hanging out at Charisma’s. We went for a hike. We lounged around. We played basketball and some other game that involved Charisma kicking my ass. I’m not used to losing, but if I had to lose to anyone, I am glad it was her. She kicks ass and is such a good friend. It was nice to spend time with her and have a break from everything. We were up in her room and I was watching her get ready as I sat on the floor. She came and sat with me, looked at me and said, “How are you so calm? So serene? You’ve been like this since the day I met you. You just have this peacefulness about you.” I told her I didn’t know. That I think to myself if I naturally wasn’t this way, I don’t know how I would survive something like this. I then said to her, “Do you see why my anger has to come out in my writing? Because I don’t get it out, any other way. My writing is how I release my anger.” She said she understood. How she doesn’t know how I do what I do. I looked up at her. “Can you believe this fucking happened to me? To him? To us?” “No,” she said. “It’s unfathomable to me.” Later that morning, I was sitting on her bedroom floor again. She yelled to me, “I have something for you. I just thought of it and I want to give it to you.” She went to her closet and came back with a ring. It’s dark, sparkly, and beautiful. “I want you to have this. To wear it and think of me, every time you do. So you know I’m always with you.” I tried not to tear up. I slipped it on. Rings never fit me. This one fit perfectly. “I love it. Thank you. I will wear it and think of you. You give me strength. I will look at it when I am sad, and try to be strong.” My friend. I am so lucky to have her. She does give me strength. She is a fighter, just like I am. I feel stronger when I am with her. She has this way about her that makes me feel like I am capable, strong, and even though you are gone, you are still always with me. She is good at reminding me of that. I am thankful for her and the lessons she teaches me. “To thine own self be true.” Right, my friend? This is so fitting for you. You are one of the truest people I have ever known. I love you.

Quinn and I arrived home last night, around 11. I feel into a fast, long sleep. I dreamed about all things sweet for once. All things sweet, except you. It is o.k. that you are not visiting me in as your own self. I know it is you, visiting me through your lovie. If that is the best you can do as of now, I will take it. I woke up today, on a mission to get shit done. I did. I ran to Starbucks for my breakfast of coffee and nothing else. I had a mini pow wow with one of my board members to catch her up to speed on some things and vise versa. I unpacked and did laundry. I met up with Rissy Roo to go over her list of intern things to do which mainly just consisted of getting our toes painted all purple and sparkly. She saw through my twitter that I was going inferno hiking later. She told me she wanted to come. YAY! I was excited to have her. We picked a time to meet up and go. She came over later in the day and we left for our little hike of the day. I think it was a little over 100 today, but I didn’t notice on our hike of all things inferno and fucking insane. I didn’t notice until Rissy was about half way to the top of the mountain and I realized I had been blabbing my face off. “Shit, Rissy. Are you o.k.?” She looked like she was about to pass out. “Yeah, I’m fine. I just need some water,” she panted. “O.k. let me know if you need to stop again.” We continued up farther. Me: Blah, blah, blah, blah, blah. Up the mountain I go. Is it hot today? I notice nothing. Is it hard today, this mountain climbing of mine? No. Nothing is hard anymore because I know what hard is like. I live in a world without you. That is hard. Nothing else, that I do, even compares to that. I look back. Shit! Rissy is bent over, trying to breathe. “Rissy! OMG. Are you o.k. Crap! I’m a bad boss! I should not have taken you inferno hiking!” I am scared now. “What if you have heat stroke! Let’s get you down to this part and I will turn around, go back up the mountain, down the other side to my car and come and pick you up!” “O.k.” she said. She got down, safely. I texted Rita who was flipping out. “Our intern is blacking out! You made her puke!” SSSSSHHHHIIITTTT!!! I haul ass down the mountain as fast as I can, to rescue  Rissy. I got to her about 20 minutes later. She looked much better. “I threw up. Want a apple carmel sucker?” she said. “I feel awful! But yes, a apple carmel sucker will make everything better. Are you alright?” I asked. She was. Thank Ro for that. I didn’t kill my little intern. My board would have NEVER forgiven me for that one! Our itty bitty is PRICELESS to us!! She was a good sport about the whole thing, but I don’t think she will be going back into the inferno, anytime soon. I am just truly glad that she is o.k.!

My Rissy is getting ready to go on her mission trip, to Wales in just about a week with her Young Life group. She blows my mind. She is 20 years old and is already making such a difference in this world. I know what I was doing at 20 and it was not going on mission trips and working my butt off for a children’s cancer foundation, for free. Her mission team still needs about 9,000 dollars. I know that I have my issues/anger with many things in this life, but I will ALWAYS support Rissy’s beliefs and what it is she is doing, because it is her heart and soul that I love. Her heart and soul that I don’t judge. Our spiritual beliefs/differences are something I embrace, as I know we are both opened minded enough to listen and learn from each other. I have taken the time to get to know this sweet little soul and I am so proud of her and so thankful that I can support her in whatever way she needs support. I have heard through the grapevine that due to some of my “anger issues,” that some people cannot support me. To each their own. But if you cannot support me, then maybe you can open back up your hearts and your wallets (hee hee) to support Rissy and her Young Life groups mission trip. I know even the smallest donation would be greatly appreciated by your God, so very much. I plan on making my own donation to help Rissy reach her goal. I know this would make my Ro, very happy.

Here’s the info to help Fund Risssy’s, The best intern ever, mission trip: Checks can be mailed to: Scottsdale Bible Church Marissa Rahm 7601 E. Shea Blvd. Scottsdale, AZ 85260 Please specify that you are donating to the Wales College Group The money being raised will go towards the following: Partnering with Young Life to host a camp for students. Provide labor, including cleaning, clearing tress, maintain “man- made” ponds, build picnic tables/chairs; outreach/evangelism. The link for Young Life is also below. http://www.younglife.org/us Love you, Rissy girl. I will always support you in life, whenever you need it. Unless you become a stripper;) Then it’s game over.

Ro baby. This is all for tonight. I’m wiped from the day. I have so much more to say as the thoughts about you and all of this are never-ending tonight. I’ll save them for a later date. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll. xoxo

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If kids can fight cancer, I think I can run a full marathon, without training for it.

Ronan. Headache. Can’t sleep. Usual insomnia. Liam is still not feeling well. He has some nasty little bug that is going around his school. He stayed with your Mimi and Papa today and is staying with them tonight. He’s contagious and I feel like can sometimes use the break from Quinny. I had some things to get done today and had an appt. with Dr. R for your daddy and I, then Quinn had his time with her as well. It was really good for him. She is really good for Quinn. He really clicks with her and she makes it safe for him to talk about you. They worked on a collage about you today. It’s not finished, but they cut out a some pictures from some magazines. Quinn picked out some things that reminded him of you. So far, he has a picture of an alligator, from that time we went to Disneyland and went on the jungle cruise. He found an add for Phoenix Children’s Hospital and had that on there. He also cut out a star and the word, Cancer. FUCK. This is so not fair. This is so not right that your little brother, gets to sit in a therapist’s office, and cut out the word, Cancer, because his little brother, died from it. I know that nothing will make this right, Ronan. But I also know that your brothers need to be talking to someone other than us and I feel like Dr. R, is a really good fit. I have not taken Liam yet because I wanted to get Quinny settled first. He will go as well. I think this can only be a good thing, for the both of them. For all of us.

I hiked today. It was hot. Around 90 but I didn’t really notice. I never do. Nothing is hot enough/hard enough/hurts badly enough. I know what real pain feels like. It does not come in the form of Inferno Hiking. I found the little gift that somebody left for me at the bottom of the trail. I am assuming it was for me. It was at the bottom of my trail, very strategically placed. Sadly, I cannot accept your little gift. Or maybe sadly for you, but not for me. I am fine with saying, gee… thanks but no thanks. I have my own Roligion, to follow. See photos below:

I left you some Ronan bracelets instead. This was the nice version of what I decided to do today. The not so nice version, was not very pretty. I am actually very proud of my self-control. I am actually proud that my anger did not take over. It made me laugh instead. I needed that after coming out of MY church today, drenched in sweat. I felt better after I went to my church and talked to my Ro. I do not need a book to tell me how to do that. Why haven’t people figured that out by now? Why does the Bible/Jesus thing keep getting pushed on me? I do not like when things are shoved down my throat so just stop. I’m never going to get on board with that book of make-believe. That is what it is to ME and if that offends you, then so be it. I am not here to tell people what is real or what is not because the bottom line is, obviously I JUST DO NOT KNOW. All I know is it does not work for me. If it works for you, great! If it works for you, that makes me happy! More power to you! I have my own beliefs and this is enough for me. It is more than enough. I will get through this, with my OWN book, in my OWN church, with my OWN beliefs. I am proud of what they are and honestly, I am still learning, so I am proud of that too. They are changing and I can feel my own spirituality growing. I am o.k. with marching to my own beat. I am sorry if you are not, but that is not something I can control. It is disrespectful to push your religious beliefs on another, especially when they are grieving. An opinion is one thing. I can be respectful of opinions, but pushing is not o.k. It makes me sick to my stomach. So just stop. I will find my own fucking way. Ronan will not let me down. I know this.

Ro baby. Do you know what else happened today? I sat at Dr. R, with your daddy. I was quiet. I had my guard up as I often do in there. I cried a lot. I don’t like to listen to how much we are both hurting. It makes everything 1000 times worse. I don’t like your daddy to hear how much pain I am really in, out loud. It’s much easier for me to keep it to myself. To shut people out. To be totally vulnerable, is so brave. I’m not that brave when it comes to vulnerability. I am a good pushing everyone away. Except for a few people in my life. I have a few people that I don’t push away for some reason. A few is all I really need as of now. I think Dr. R is kind of a loss for what to do with us. Because as I told her, we don’t have normal marital problems. We have one problem and that is a dead child. And how do you fix that? You don’t. You can’t. It is the one problem, that cannot be fixed. As we were getting ready to leave there, we were walking out and she goes, “You should come and run the San Diego Marathon with me, June 3rd.” I just looked at her and said, “I haven’t been running. At all. I haven’t trained in time to run a full marathon.” She then goes, “Well, just do the half, I’m doing the full.” A huge smile fell across my face. Running a marathon, without having trained for it?? “I’m in. I’ll run the marathon with you. Not the half, the full.” She said, “Look what I have to do, to get you to smile.” I left there, smiling alright. I left there and had about 50 different thoughts run through my mind. I ran them all past Rita. I called her and said, “I’m running a full marathon, June 3rd, without training for it. Except I’d like to change the name to, Maya would like to die, so let’s see if running 26.2 miles, will kill her.” She did not like the name of the marathon. We came up with some better one’s instead. We came up with a few really good ones. Like how about, “If kids can fight cancer, I think I can run a marathon, without training for it.” Or Maya’s Marathon of Madness. I kind of really like that one. Rita and I came up with some genius ideas tonight to make this, really, really fun. And maybe raise some money in the process as well to get Dr. Mosse’s trail funded. It’s time to start saving some babes. I can totally do this. I have you to push me and I know you can get me through anything. ANYTHING. So, it’s a done deal. I registered tonight. June 3rd, I am running the full marathon in San Diego. I’m excited. Rita and I are going to hash out our plan of action this weekend. Cancer fighting ninja’s in full effect. BRING. IT. ON.

You’re daddy thinks I’m nuts. So does Rita. She called me a lunatic today. I’d agree with her. I’ll be the first to admit it. But it makes me feel spicy. My craziness, reminds me of you. And why not do this? Why not? I have nothing to lose. Not a thing. I think of you, and all that you went through. I think of you, and how you’ll never get to run a marathon. I will run this for you, because I can. Because I am alive so that simply means, I can. I am alive and I am healthy so why the fuck not?? It’s good enough reason for me, Ronan. I don’t have a reason for lame excuses. I want to run this marathon, so I’m going to. End of story. I said after the NYC marathon, that I’d never run another one due to it being so hard. Well, back then, I did not know what real pain felt like. Now I do which is why I know this marathon is not going to be a big deal. I’ve totally got this. Go big or go fucking home, right?? Right.

This is all for tonight. It’s late. I miss you. I love you. I hope you are safe. G’nite sweet boy. I miss you so much that at times, I don’t think you were real. I’m sorry for everything.

Rita… meet my friend, Mandy Bee. #awkward

 

Ronan. This is what my nights are like. Fall into a light sleep. Into a place where you are in between being awake and asleep, floating in and out of dreams/reality. But the entire time you are kind of sleeping, you have a bad feeling in the pit of your stomach. Like something is really, really wrong. Just as I get to sleep, I am jolted up out of bed. I’m drenched in sweat. Something indeed is not right. But what? Then I remember that you are not here. I get up, slam another Ambien and eventually it knocks me out. When my alarm goes off at 7 a.m. I cannot get out of bed fast enough. You’d think it was if I thought I had you to wake up to. I don’t really ever think this. I think it’s mainly just adrenaline that fills my body and makes me so restless, that waking up to do things feels better than the quietness that fills the dark nights. Do you know what I do at night? I wander around the house and turn our dryer on about 2/3 different times. I don’t care if the clothes are dry. I’ll dry them again, anyway, just to hear the noise. This is not normal. I know this, but I don’t really care.

I busied myself today with just getting normal things done like a normal mom would do. I ran to Trader Joe’s. It still takes my breath away that I am the mom in the grocery store, without the kid in tow. I went into bereaved mission mama you still have 2 kids mode and threw some things in a cart anyway. I did alright. I made it out of the store without abandoning my cart. To me, that is a success. I hiked up the mountain today with Mandy Bee in tow. We were there for a couple of hours. We had a dance party at the top. She definitely has moves like Jagger. In a Canadian radness sort of way. The weather is getting hotter which means less people on the mountain. Your daddy asked if it was an Inferno yet. I told him it was close, but not quite. It has to be over 100 to truly be an inferno day. It’s getting closer. That was yesterday, this is today, Ro. Yesterday was all things madness. I ended the exhausting day, in the ER of PCH with Mandy Bee because her babe is sick. This is how last night went down. Could be the funniest mix up/awkward first meeting of friends for the first time. I had told Rita, earlier in the day, that Liam was not feeling well. I had picked him up from school and he had a little cough. No biggie but he looked beat. I also may have told her I was in my room with the door closed, crying my eyes out. Both things were true. The part that I left out was that Liam was asleep in his bed, therefore it was o.k. that I was having a moment. The the last thing she heard from me for a few hours until she texted me to check in, was that I was not o.k. I’m throwing this next part in and calling it texts from one bereaved mom to another clearly sane but insane mom. It went a little something like this…

 

 

 

 

 

 

 

 

 

 

While I was texting with Rita back and forth, it may have dawned on me for .2 seconds that, hey, this is a little strange… she wants to come down to PCH, to sit in ER, with me, Mandy whom she’s never met, and Mandy’s son. I then thought to myself, what a good friend she is… I may have also thought for .2 seconds that this was totally out of character for Rita to do, but because of my lack of sleep/grief brain/talking to Mandy, those thoughts quickly left my mind. I said to Mandy, “Hey Rita wants to come down here. It that o.k.?” She replied with, “Of course!” Rita ran down to PCH as fast as she could and came flying through the door. I had no idea that anything was off. I was just glad that both of my friends were meeting and Zane was out like a light and resting comfortably. After introductions were made, Rita said something about the going to the vending machine to get candy. “I’ll come with you,” I told her. As soon as we got to the vending machine, Rita looked at me and said, “Um.. I have a confession to make.” “What?!? I asked her all blood-shot eyes/confused. She looked at me with a look of amusement/what the fuck is wrong with you, crazy pants?!! “I totally thought you were here, with Liam. I had no idea it was Mandy and her son here. I thought I was coming to see you and Liam!” “What do you mean?” I squealed. “I sent you a picture of Zane and everything!” She looked at me like and said, “You sent me a picture some boy with brown hair and the back of his head! Awkward! I’ve never even met Mandy, yet here I am, in an ER room with her and her little boy. Not that I wouldn’t come down here for Mandy, but maybe lunch first would have been nice!” We both started dying laughing. “I have to tell Mandy this. She will die.”

We told her. She laughed but is so the kind of person that loves me so much, that she just rolls with whatever shit I throw her way. This includes, “Hey, meet my friend, that you’ve never met before, in the ER while your son is getting breathing treatments. It’s a party now!” It ended up being fine. And provided me with the laughter that I so needed for the day. Yesterday was a really hard day for some reason. I told Rita that I was so sorry. Mandy too for the totally awkward but not awkward mix up because both of them are so accepting of me and my crazy head. I came home hoping to drift to sleep. That did not happen. I sobbed in bed instead. Your daddy just told me he was sorry and how he’ll never understand this. He fell asleep. I did not. I wrestled with sleep for a couple of hours and woke up, ready for another day without you. Liam did not look well this morning. Quinn was so snuggly in his bed, that I did not want to wake him. I let them both sleep. I kept them both home. I was supposed to hike today with a group that all met up and hiked for you. It was put on by a girl named Rachel whom I met at your fashion show. She organized a whole hike for you and ended up raising 400 dollars in a really short amount of time. Can you believe that?! She had balloons, signs, a cute little table set up with your pictures everywhere. She hiked it barefoot, in a purple tutu and everything. I am amazed at all the good people in the world, Ro. Every time I hear of people like this, it is a little reminder to me, to continue on. Thanks to all the lovies who went out today. It meant a lot to me. I thought about you all, all day long.

I’ve had a really rough past 2 days, which I don’t want to say too much about, until I am 100% sure, but it turns out, people are not always who they say they are. In my naïve head, I want to believe that everyone is good and would not take advantage of others, but I am learning a very hard lesson that this is just not true. There are bad people out there. I often forget this but due to this lesson, I am learning that I need to have my guard up a little more often. I just cannot believe there are people out there who would take cancer and use it to their advantage. There are and it’s due to this that I’m going to have to start being a little more protective of our situation. Tonight, I do not have the energy to sit and fly off the handle about this. Maybe one day, but not tonight. I’m too mentally beat to have another thing to be upset about.

I hiked in the dark tonight. I ran down to PCH to check in on Mandy Bee. I was not prepared for how hard things were going to hit me tonight, until I left there. I am usually fine there. Not tonight. I left there, tears steaming down my face. I heard your voice. “I love you, Mama.” “You’re my best friend.” “Come on baby doll!” I had visions of chasing you down the hallway that we used to walk through. I could not get out of there, fast enough tonight. But you know what, Ro? Mandy Bee would walk through fire for me and I would do the same for her. In a heart beat.

I booked some flights today. It was a fuckwad of a mental block. I sat at our kitchen table for 2 hours, and with the help of Mandy Bee and Rita, I picked dates and booked 4 fucking airline tickets. Not 5, but 4. It was horrific. Your daddy said, “Can’t you wait until I get home, to do this?” I responded with an, “No, I cannot. I’ve tried to do this for weeks now. I have to get it done today or else I am going to slit my wrist. I have to just book these, and at least get our airline tickets taken care of. Airline tickets are done. That’s all I could do today in regards to May. It was enough today. It was almost too much but I cannot bear the thought of scrambling so last minute. A plan is good for all of us.

This is all for tonight. I miss you. I love you. I hope you are safe. G’nite baby doll. G’nite little lovies. Thank you to all my badass hikers today. I loved hearing about how so many of you got so dirty and how much you thought of Ro, the entire time. Thank you, so much. Thank you, Rachel. For working so hard and throwing together, such an amazing event. And FUCK CANCER.

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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