Dear Empire State Building, Part 7

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Dear Empire State Building,
My name is Sabrina Houara and I just finished my first classes at Arizona State University, where I’m majoring in health sciences pre-professional, hoping to finish in 3 years instead of four. That’s me: over-achiever, future doctor, overall nerd, and voice for kids with cancer.
I know with every part of me that I was meant to be a pediatric oncologist, but I may have never found this path if it hand’t been for Maya and Ronan and their inspiring love for each other. Like so many others I first heard Ronan’s story when Taylor Swift first sang her song Ronan, based on Maya’s blog. I looked up the story and spent the next few weeks reading and bawling.

 
It seemed unimaginable to me that this beautiful little boy could have been ripped from the world so soon, and that so many kids are taken by this awful disease known as childhood cancer. I’m still baffled by the statistics. I knew after just a few posts in that I had to do whatever I possible could to help change this, but I still wasn’t sure how. Then a few days later I approached my parents with an idea: I wanted to be a pediatric oncologist, and they were completely on board. I quickly began forming this idea of what kind of doctor I would be, but I already knew. I would be the kind of doctor I would want for myself, for my own children whenever I have them. I want to be the type of doctor to fight for each and every patient with everything I have, because this is life or death for them. When I tell people that I’ve decided to go into this field I’m usually met with some form of the phrase, “Oh that will be so sad, I could never do that.” But if I can save the life of just one child, it will be worth it to me. These kids will be dying whether or not I’m right there on the front lines, so I will do everything I can as a doctor to help change this for them.

 
The thing is, it won’t matter how good of a doctor I am (and I plan on being a flipping good one) if we can’t get more funding for childhood cancer. The more funding we can get, the more experimental trials we can fund, and that brings us one step closer to finally finding a cure for this horrible disease that is taking the lives of so many children. The key to getting more funding is to raise awareness, to get people to realize that childhood cancer is a real problem, and that it takes the lives of 7 children every day in the US alone. Those who survive are left with side effects from treatment that will affect them for the rest of their lives. We need for more people to see this, to want to help.
This is where you would come in. Lighting the Empire State Building gold for one day in September would bring heaps of awareness. Many families were seriously hurt when you denied their requests, it felt like you were saying their child didn’t matter. I don’t know any of this firsthand, but it’s easy to tell from the social media campaign that came soon after two non-profits filled out your application and were denied.
You can still make this right. Please find it in your heart to change your mind, for these kids. For Ronan and far too many others. Help us make it so that no parent, grandparent, aunt, uncle, sibling, or cousin has to watch their loved one slowly die as a result of childhood cancer. Help us make it so that no child knows the pain of having their little body invaded by cancer and the horrific treatments that go with it. Help us raise awareness for childhood cancer so we can find a cure and no child will ever die from this killer again. Again I say, you can still make this right.

 
Sincerely,

 
Sabrina Houara
Childhood Cancer Awareness Advocate and Future Pediatric Oncologist

Dear Empire State Building, Part 6

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Dear Empire State Building,
My name is Jennifer Garcia and I am a 24 year college student from California. I have been to New York once and I remember feeling like it was the most magical of places, the place where anything could happen. I always aspired to go back one day and I hope when I get the chance that I can know that for one day in September the top of the Empire State Building sparkled gold for our kids. I say ‘our’ kids because it shows how much of a tight knit group of people we are, us activists for childhood cancer awareness.

You think that we are pushy, mean and threatening? We are passionate, angry, devastated and some broken beyond repair by the loss that we face everyday. The loss of a child whether it was our own child, a friends child, a little brother or sister or a beautiful boy with the most sparkling blue eyes that you only know through photographs and the words of a mom who will never stop fighting for him. I was aware that kids get cancer, I saw the St. Jude commercials and I would frown for a moment and then the program I was watching would come back on and I was sucked back into the happy state of ignorance. All that changed when I watched Taylor Swift sing at the Stand Up To Cancer telethon. Before she even finished the song I was sobbing uncontrollably. When i was finally able to compose myself I raced to my laptop and typed “Ronan” into Google. My world changed that day I could no longer just shake my head and think how sad when I saw the St. Jude commercials or the collection jars at the supermarket. I started doing research and was horrified when i found out how underfunded pediatric cancer research is. All the times I donated to American Cancer Society only 1 cent for every dollar went to pediatrics. Our kids are getting swept under the rug like a dirty secret. It seems like the world is whispering, “Shhh, If we don’t talk about it maybe no one will notice.”

Well, we have noticed, it is all around us, the world is full of scary things and we want to protect our children any way we can. Unfortunately, we can’t protect them from this we can kiss away their tears and try to make them smile but this isn’t just a scraped knee or them teased at school. This is the biggest bully they can face and no matter how much we whisper to them “It’ll be okay” we know this is one thing we can’t promise to save them from. There is nothing worse then knowing you can’t protect them. When I read that Maya was trying to get you guys to go gold for ONE day in September, sadly my first thought wasn’t this should be easy. My first thought was this is going to take some work to get noticed. What kind of world are we living in where we have to shout and send out petitions and trend worldwide on twitter to raise awareness for childhood cancer. You light up different colors for the dog shows and the Ninja Turtles movie premier. Are dogs and ninja turtles more important than our kids? In a way that is what it sounds like your saying.

I read the message that you don’t take requests from individuals just organizations. The Ronan Thompson Foundation is an organization and they along with thousands of others are begging, yes begging, you to change your mind and do what is right. Restore our faith in humanity and turn gold for one day. We are not a picky bunch, you choose the day in September. Just please light up gold. I am not one to beg or plead but I want to have kids one day and I don’t want to bring them into this world knowing that Cancer is a possibility for them. I want them to have endless possibilities for happiness and success. I want them to live spicy sparkly lives and I want to know that the possibility is there for all kids. We can’t save them all but we can try. We can try extra hard for those kids that didn’t get to reach their full potential. The one’s that we only saw fleeting glimpses of the outstanding things they were going to do. Help us make their lights continue to glow gold.
Be Bold Go Gold,
Jennifer

Dear Empire State Building, Part 3

Ronan, before he was diagnosed.

Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

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 kind of think I might do this one day.

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“Desert Runners” is supporting The Ronan Thompson Foundation during the month of June! The film follows ordinary people pushing themselves to extraordinary limits by competing in 4 ultra-marathons in the most treacherous deserts in the world.

Much like how RTF will never quit on funding for new treatments and defeating childhood cancer, these runners will never quit on their goals.

The film is available for download at http://buy.desertrunnersmovie.com/ Any amount of money you choose to spend over $9.99 will be donated to the Ronan Thompson Foundation for us to pursue our goals and fund cutting-edge childhood cancer research. Enter the code: RONAN at checkout and receive a 10% discount on the film!

If you spend over $11 you will unlock the SUPERFAN PACKAGE and get access to over 30 minutes of bonus content including interviews with the director, cinematographer, executive producer and the desert runner himself Ricky Paugh.

We are so very excited to be a part of this amazing adventure.  Clink on the link below to watch and support RTF! Thank you, Desert Runners for choosing RTF as the charity to support!!

http://buy.desertrunnersmovie.com

I have something new to share…

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This has been in the works now for some time now, but we’ve just been being a little quiet about it.  As a board, we decided RTF needed a new logo.  It was hard for me to part with the baby seal, as it had sentimental value.  Nobody really understood why we had a seal as our logo.  It was because “Ronan” means “Little Seal” in Gaelic, but most people don’t know that therefore the seal was confusing.  We were getting a lot of, “Are you trying to save the seals or what?” No dudes, we’re trying to save kids with cancer… how do you not get that from looking at a seal? (kidding. I know it is confusing if you don’t know the back story)

We met with some very talented and kind people at Fervor Creative for hours upon hours.  I even had them revamp your seal logo before my board members told me they were just not feeling it anymore.  So I took Tanya and Fernanda to have yet another meeting with them.  We sat and talked about you and the things that came to mind when we thought of you.  I had a picture in my mind of something really simple.  A boy wearing a Fedora. With his head held high, like you alway had yours. We also talked about stars and the significance of those to us.  I knew having Fernanda with me was vital to getting this done finally the right way.  She has a way of expressing her thoughts about what you represent in such a beautiful way and sometimes I am too sad to do so.

We got some samples back and as soon as I saw them, I started to cry.  What they came up with is beyond perfect and I am beyond in love with it.  I sent it to your daddy and he had the same reaction.  He said it reminded him of the book, “The Little Prince” which he loved to read to you.  I knew from both of our reactions, that this was perfection.

So, here you go Ro and supporters of The Ronan Thompson Foundation.  Makeover complete.  Thank you to Fervor Creative for taking a bunch of rambling words full of such love and pain, and turning it into something as beautiful as this.  You have hearts of gold for taking this on and not charging us a dime.  We are forever thankful for what you have created for us and promise to continue to do good things in this world with the gift you have given us.

 

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I wish I didn’t know what it was like to only be able to kiss your face through the pictures on my iPhone. I miss you. I hate this.

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Ronan. Every year since you left when Mr. Sparkly Eyes’ birthday rolls around, I always give him a card that I’ve made for him through my iPhoto with a picture of you on it. A few nights ago I was at my office working on my book, but I needed to take a little time out so I started to go through my pictures of you to make his card. It’s never an easy thing for me to do, but I feel like it would be important to you, so I carefully pick out a picture that reminds me of how happy you were while you were here on this earth. I usually just write really some simple words and I always sign it from the both of us. Ring, ring went my phone as I was doing this little project and I saw the word “Lover” popped up on my screen which is really Macy. Of course I picked up because I always do when she calls. She started chatting away about something and as I listened, I buried my head in my hands. I went to answer the question she had asked me, but she knew from the tone in my voice that something was wrong.

“Oh babe. What’s going on?”

“Nothing. Everything. I’m sitting here trying to make Mr. Sparkly Eyes’ birthday card and is it weird that I’m putting another picture of my dead kid on it like I do every year for him? I’m going through these pictures and I cannot believe he’s not here with me to give him this birthday card himself.” Insert more sobbing here.

I listened as Macy told me that it was not weird at all and we continued to chat for another half an hour or so until I stopped crying. She ended up making me laugh after she listened to my blabbing away and crying while she did her best to talk me through what it was that I was feeling at that moment. I didn’t finish the card that night, but ended up finishing it a few days ago instead. I have learned when something just isn’t feeling right, not to force it and I knew if I forced your card, it was going to be crap. I take my card making very seriously, especially when you are involved. I got the card in the mail the other day and of course, it is perfection and I know it will make him smile as I tell him the story behind that little picture of you and your happy face.

Things here are still really busy and there is not a lot of down time between Poppy and your brothers. I am trying my best to keep my head above water and have been making sure I get some form of exercise in almost everyday. Mostly it’s been consisting of hiking up Camelback Mountain a.k.a my church as they just opened back up the hard side (Echo Canyon) again. I have so much anger inside of me still and it seems the best place to take it out on is the mountain, otherwise I will just internalize it all and end up exploding one day. Sometimes I hike by myself, but I have also been going with Tricia again which has been really great. You know, going through what we went through with you was really hard on our friendship. I made some mistakes, had a lot of expectations, felt let down and at times, was really judgmental about some situations that I had no right to be judgmental about. I never meant to hurt her as everything I said was always just coming from a place of love, but I also know that place of love was a little harsh. She being your Godmother, had a really hard time with all of this and somehow we ended up getting off track a bit. Slowly we’ve started to fix some things and the beauty of this is we know that our friendship is always going to be here; even when it’s been a little quiet at times. We’ve had some really harsh talks, some really good talks, and we’ve both apologized as we know our friendship is worth saving. She is family and at the end of the day I know where her heart is and it has always been with you and it will always remain there. I didn’t go to her wedding which you know I am sad about, but it wasn’t for any reason other than it was in Mexico and I wasn’t willing to take Poppy with me and leaving her behind was not an option, either. I did give her something blue to tuck into her bouquet though which was a tiny piece of your blanket. It was hard for me to take the scissors and actually cut off a piece, but I needed something of you and us to be there with her. I wish it could have been the two of us there together and knowing the should have been’s of her special day will forever haunt me and make me sad; but the look of happiness on her face from the pictures I saw do take away some of that sting.

So, Poppy’s first birthday is right around the corner. April 8th to be exact. I don’t know how your baby sister is almost a year already as the time went by so fast. I’ve been trying to figure out what to do for her birthday, but the fact of the matter is I’m feeling overwhelmed about it. Do we just do something quiet at home or have a full on party? I keep going back to what would Poppy want us to do? In Poppy’s perfect world, I’ll bet she would want to just have a day with just a few people and about 100 dogs. She is dog OBSESSED! I told your daddy I’m starting a campaign called, “Poppy needs a puppy,” but he’s just not having it. Anytime she sees a dog, she starts barking and gets so excited that her little body just shakes and she usually ends up waving her arms so fast that she falls over. All day long she goes around our house, walking on her hands and feet, in a dog position and sticking out her tongue and panting like a dog. We don’t even own a dog so the fact that she is doing this from the memory of the dogs that she has seen, makes it even funnier. She is such a little character and loves to entertain us all of the time with her constant babbling, dancing to her favorite song which is “Get Lucky” by Daft Punk or any type of rap music. Shorty’s got game and seems to be developing quite the spicy little personality. I’ll get her birthday figured out soon, but something tells me it’s going to end up being very low key and sweet.

I’ve got to run little man. I’ll write more soon, but I have to get back to this book business. I miss you. I love you. I hope you are safe.

xoxo

The treadmill made me do it.

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Ronan. So, this happened tonight. The usual running around like mad, Poppy is into everything, I’m trying to get something on the table for your brothers to eat before they come home. I have so much nervous energy today that I haven’t slowed down once.  I know as soon as your daddy and brothers walk through the door I will be handing over Poppy to them so I can go and work out because if I don’t, bad things will happen.  At least that is what I tell myself in my head.  I go to my little class where I find myself in a room full of people that I have no interest in talking to, half are doing weights/floor exercises and the other half are on the treadmills while we are getting instructed on what we need to be doing.  I am of course on the treadmill, happily running away while staring at myself in a mirror. My reflection looks sad but determined.

We take turns running at our base pace which for me is a 6.7 speed and 3 incline.  We are told to step it up for 90 second all outs so of course I push myself to the max.  5 incline, 8.0 speed.  I start to run as hard as I can and my heart feels like it’s going to explode out of my chest, but of course I don’t stop.  All of a sudden, I really can’t breathe or catch my breath for what feels like minutes.  Then it happens.

Is this how Ronan felt, right before he died? 

He couldn’t breathe, he ran out of air, oxygen, and probably felt just like this right before he died. 

How could you have let this happen? How could you not have saved him after you promised him that you would? You are the worst human being on the planet. You let your child die and now you just get to continue on with life while he does not? How is that at alright? You should be dead, not him. 

Fuck you. You don’t get to stop and sit here and think about how hard this is and how you want slow down and stop. You keep going because you are not the little boy who got cancer and died.  You get to be here and do this and you don’t get to stop. Ever. 

I stare up at the screen which is monitoring my heart rate and beg for it to come down because if it does not soon, I know I will pass out.  I continue with the torture of beating myself up on the treadmill while flashes of you dying and taking your last breaths fill my mind.  The person leading the class is now keeping a watchful eye on me as I think he has caught on to the fact that I might be over doing it just a tad.  An hour later and I am finished and I somehow make it to my car only to drive home to a house that doesn’t feel like home to me anymore. I head straight for the shower and try my hardest to scrub the images of you not being here out of my head, but it doesn’t work.  I then throw myself in my bed, where I cry the tears for you that I haven’t had for a few days.

Your daddy comes in, asking me what happened.  I ignore him and continue to cry into our mattress. When I finally come up for air, I snap at him that nothing has to happen, for something to be wrong. That I just want to be fucking sad for the one thing that I will be sad about for the rest of my life.  I don’t want to be hovered over.  I don’t want anyone to wipe away my tears. I just want to be left alone.

This is all I can say for tonight. I’ll let my friend, Tyler Knott say the rest.

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

Typewriter Series #690 by Tyler Knott Gregson

There will come a time, a day, a moment when words are not enough.
When the letters hooking to other letters and tying themselves
to each other, the trains of vowels and consonants chasing each other
out of my mouth just won’t do justice to the avalanche that you’re
struggling through.
If this is that day, if these are those moments I will not speak,
but I have no choice but to leave you with these attempts, as futile
as they might be, for words are all I have to offer
and the only currency I believe in:

This is not, and never will be, a goodbye. You should not, and never can
hold onto the should haves or could haves or why didn’t I’s.
The time will come, I promise you, for us all to stop wearing these bodies
atop these souls.  The time of taking one long, full and deep breath
in through these lungs only to exhale it out through brand new lips.
The last light we will ever see through these perfect and beautiful eyes
will be the first light, the exact same and blindingly gorgeous first
light that filters through new irises and shocks our tiny pupils
before we blink. What a gift every single day in between has always been.
What a hauntingly painful and sublimely joyous gift to live, truly live
every single day in between these firsts and yes, these lasts.
Do not carry the weight of all you did not say, the times you did not make
the time or the excuses you made, because there is a secret you must know:
Those that leave us, never do. They see us how we never could and how we
were always so scared to. When they go, bravely stepping into the first day
of their new lives, all they pack into the bags they choose to carry,
are the memories that soothe their longing and and settle their aching bones.
It is we, always we that carries the luggage of regret and burdens of doubt
Somewhere, right this very second, they are beginning their journey back
into love. Somewhere, right this very instant, the first wobbly steps in their
search has begun again.  Somewhere, the only person that truly makes sense to
them, the only person to ever exist and exist exactly for them, is waiting. 

You will hurt.  You will cry and you will be scared. You will miss and long
and ache and look for their fingerprints on the life you’re going to lead
without them.  You will swear you heard, if only for an instant, the sound
of their laughter or the timbre of their voice.  This is ok, and more than
that, this is beautiful.  Hold onto the sadness you feel like a trophy.
Hoist it high above your head and shout to the photo that is not being taken
of you that you loved them, you will always love them and you are proud
of the tears that roll down your face. They live inside the memories that give
shape to those tears and you must never apologize for your sorrow, nor your
joy when it too returns to your days. 

These are the words for those that remain; for all of us and all of you that
are left scrambling and shaking and weeping tears of compassion and joy and
confusion.  These are words when words are not enough.  I say them because I
must say them, because words are all I have to offer besides my shoulder and
my hands and my belief that this is not and never will be goodbye.
Today is and always has been such a perfect day to say goodbye,
and to once again, say Hello.

-Tyler Knott Gregson-

 

 

 

Back in AZ with a Birthday to celebrate. Or not.

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Ronan.  We are back home and I am almost done with the whole holiday/celebrations of all things that still feel weird without you. My birthday is Saturday and I promise you I am trying to have a super good attitude about it, but I don’t really feel much like celebrating.  This does not fly with your daddy as all he wants to do is make sure my day is overly the top special.  What is the nicest way to tell him that over the top special to me would be hiding in bed all day, under the covers?  I can’t do that though.  It would break your brothers hearts so I will suck it up and do what is best for them.  I will smile when I blow out my candles and make the same wish I do, every year. The one where I just hope so much that you are alright, safe, and hope that someday, I will see you again.  I will smile for the picture that I know will be taken and I will forever wonder how in the world I can look so happy, in a picture when I feel like I am still so broken, sad and shattered.  It truly is amazing the things we as adults can do to survive such horrific pain.

Washington was all things perfect. Well, almost;) I basically go there and hibernate for the winter.  I feel like I did a lot of sleeping, which I never do well here.  Every night was the same as I would crawl into bed with Poppy and pass out until she woke me up.  Quinn and Liam have their own bedroom there, but they prefer to sleep in my room with me every night in another bed that is in the room.  It’s like a big slumber party and is one of the things in life I love so much.  Every morning when Poppy would wake up and I didn’t want to, Liam would grab her and say, “Mom, do you want me to take her downstairs and play with her so you can sleep a little longer?” Best brother ever and I happily thanked him and told him what a great big brother he was as I snuggled up to Quinn to sleep for another hour or so.  I don’t know if it’s the fresh air, cold weather, or just the comfort of being at home that knocks me out, but it always seems to do so.  I also spent a lot of time running which felt so nice.  I finally feel like I have my running mojo back and it always seems to come back when I am there.  I have a marathon to run in a couple of weeks so I made myself be pretty disciplined with my fake marathon training.  I was pretty consistent with running my standard 3.5 miles just about every night.  I somehow talked Brianna into running this thing with me.  Must be the older sister influence;) She ran with me at home and we even did 7 miles one night which was surprisingly pretty easy.  Her little 19-year-old body will be just fine.

Back in Arizona is hard for me, I’m not going to lie.  The first night we got home I felt like I was sucker punched as I walked through the door to our house without you bouncing behind me.  I handed Poppy to your daddy as he hadn’t seen her in a few days, told him I was exhausted and asked him to please take care of her so I could go to sleep.  I knew the sleep wouldn’t come as all the voices in my head were screaming so loudly.  I haven’t touched anything to sleep in over a year, but that night I needed to just pass out into oblivion for a solid 6 hours so I did.  Oh, how I sometimes miss the days of complete darkness with my old friend, Ambien when the world just quietly slip away.  I had to give up my love for that shit a long time ago due to loving it a little too much, but I think once a year is an o.k. compromise.  Sometimes I just need a night of blackness.  I had warned your daddy, so he was on Poppy duty and was happy to do so as he had missed her so much.

Speaking of Poppy, Ronan. Uhhhh…. remember when I asked you to make her “extra spicy?”  It is too late to give just a bit of that spice back???  What in the world happened to my sweet, cuddly baby girl who just cooed and started sweetly into my eyes all day long?! Now my days are filled with this very wild, strong-willed girl who reminds me of a little boy I once knew so very much.  She has turned into such a little spit fire who is on the go all the time and is constantly babbling, screaming (in a good way) and is into everything.  To say she keeps me on my toes is an understatement as I am chasing her around all day and she is only crawling. Imagine what she is going to be like once she starts to walk!  You know I am loving every second of it and so are your daddy and brothers.  She is full on obsessed with your daddy, too.  In a way that I really don’t remember any of you boys being.  If we are in a room together with her, she wants your daddy over me.  I secretly love it as it is amazing to see the bond between a father and a daughter.  It’s all so new to us all but so beyond sweet.  Your daddy is in total heaven about it.

Alright little man, this is all the update I can do for tonight.  Back to writing this book I go.  I miss you.  I love you.  I hope you are safe.

xx

For all my Arizona peeps…

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These 2 “elfs” are requesting unwrapped gifts for The Ronan Thompson Foundation Candy Cart. If you visit Garage Boutique for Kids, Nove’, or High Point this holiday season, please bring in an unwrapped toy to receive 15% off your entire purchase.  These toys will be used for Ronan’s Candy Cart when we visit Phoenix Children’s Hospital.

Thank you and happy shopping!!!

xx

 

 

 

  • Instagram is my BFF

    Off the grid. #poppy #ronan #fucancer #sedona #naturebaby #theadventuresofpoppythompson Good Morning from Sedona! #poppy #ronan #fucancer #poppyroo #sedona #poppyhasanewbestie #francis @jcaccia Sweet dreams, little ones. #poppy #ronan #fucancer #thisroomisrad #sedona #nightynight
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