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

Be Bold Go GOLD!

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It’s time to… #BeBoldGoGold!

Get your glitter on! We’re kicking off Childhood Cancer Awareness Month with a bang & a sparkle! Throughout September, we’re turning ourselves into spicy, gold human billboards for childhood cancer awareness and want YOU to join us! Welcome to the #BeBoldGoGold Challenge!

HOW IT WORKS:

-You deck yourself out in your gold bling or glitter—jewelry, clothes, facepaint, you name it, you rock it. You head out into a public place. Talk to at least one person about childhood cancer—tell them a fact, like that 46 are diagnosed with cancer every day. The goal is to raise awareness, so talk to as many people as you can & encourage them to take the #BeBoldGoGold Challenge

-Film/photograph your adventure, and tag us in it! We’re reposting submissions to our new #BeBoldGoGold Instagram, Facebook, and Twitter. When you post your video/photo, nominate 3 people to carry out the challenge by tagging them. They have 48 hours after being tagged to get their gold on! Make sure to hashtag #BeBoldGoGold and #RTF.

-At the end of September, we’re giving a prize to whoever goes all out and makes the biggest impact (aka raises the most awareness)! We’ll also have #BeBoldGoGold shirts available to purchase (link coming soon). If you would prefer to donate instead of (or in addition to) the challenge, visit: http://www.theronanthompsonfoundation.com/ & share the link.

The Challenge kicks off August 29th… stay gold!

Announcing our 3rd Annual Gold Party! Buy your tickets before they sell out!!

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Working on my little Empire State Building Post… Thank you all who have been so supportive. Until I get it finished, there is this. I love you all. I miss you all. I’m sorry I’ve been so quiet on here. Just trying to keep my head above float. Wait… I think I meant head above water. I am so tired, I cannot even see straight.

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Ronan. Somehow our summer is over and I am left here scratching my head. How did summer go by so quickly? How in the world do I have 5th graders? Why isn’t Ronan starting the second grade? When is somebody going to end this sick joke and just freaking bring him back? I still think that, Ro even after all this time, that somebody is just going to knock on my door one day and hand you back to me. I want to scream sitting here at my office staring at your little picture that makes me sometimes wonder for a split second if you were really even real. That life I knew with you seems so long ago. Another lifetime ago. I am trying to cling to the life I had with you with everything that I have, but as time goes on it gets harder to remember. My old memories are being replaced by new memories as if they are in competition with one another. Nobody is going to win this fight. I want my old memories just as much as I want my new. I might just want my old memories, the good memories with you, more. The good memories are hard to come by. Sometimes remembering them is just as painful as remembering the bad, cancer baby memories. I wish I could say I have found just a little peace with all of this, but I have not. I truly do wonder how parents that have watched their child die, find peace. Do they ever truly really find it again, or just pieces of it here and there? Feeling peace about you dying is never going to be my thing and I am o.k. with that because at least I am being honest with myself and what life feels like without you which is still hell on earth everyday.

So… summer is almost officially over. We spent all of June in AZ, which we never do but with your brothers getting older they had committed to a lot of basketball and as much as I wanted to peace out AZ to get to Washington, I had to be supportive of their commitments. June sucked balls. It was really fucking hot and I was really missing my family, but I did my best to put on my fake ass smile and get through it. As soon as July 3rd came, we hopped on a plane to Nana and Papa’s house. Our time there was as close to bliss as bliss can get anymore. It is the only other place that brings me the most comfort, peace, and happiness… besides New York. I love my home. I love going back. I love and miss it so very much. I could not wait to get Poppy there and let her roam free and fall in love with it the same way you did. That is exactly what she did. We played outside from the moment she woke up until the moment she went to sleep. Usually we have a lot of down time there, but this summer I was on a mission to take advantage of everything we could do outside. Your brothers would wake up every morning and go, “What adventure are we going on today, mom?” Oh, let me see… as I would get on my phone to figure out what really amazing place I could take us to for the day. We would pack up the car in the morning and head out until Nana and Papa got home from work late in the afternoon. We did a lot of hiking. A ton of hiking where we would get lost for hours upon hours in the thick of the woods, and I appreciated the nature and beauty so much. I could literally feel my soul exhaling and the peacefulness that never exists inside of me, found me for a few hours each and everyday. I was so thankful for the time out from my life back in Arizona where I often still feel like I am suffocating to death. I’m not even being dramatic. Arizona is slowly killing me.

“Boys! Do you know how lucky you are to be spending your summers here. Look at all these beautiful trees! Look at these waterfalls! Look at all this green! All this fresh air! Isn’t it so amazing? Please tell me you appreciate this. Not everybody gets to experience things like this.”

They both looked at me like I had gone off the deep end, but are to sweet to tell me otherwise. Instead they both told me that they knew how lucky they were to be able to come back here every summer. I know they love it just as much as I do, but I think it’s the spending time with your Papa Jim that they love the most. Quinn also found a new favorite hobby which was “mowing” Nana’s field which really just consisted of him going as fast as he could on her riding lawn mower. Every night we would all find our way in my old bedroom and I would watch as all three of my babes were lulled to sleep by the fresh air that came through my bedroom window during the cool, dark nights. I sleep much better there than I do back at home in Arizona. In Washington, I sleep like a freaking baby. I think it’s the comfort of being back home with your Nana and Papa and all of the fresh air that we get that makes me fall fast asleep and stay that way for more than 3 hours at a time. It was heaven.

While we were there, Poppy had her first little accident. She has been walking for a while now but still takes the normal falls here and there. It was during the middle of the day and I was home with just Quinn and Poppy. Your daddy and Liam were at a movie and Nana and Papa were both still working. I was playing with Poppy in the living room and we were playing one of her favorite games which is her version of hide and go seek. She likes to take a blanket, cover her entire body while standing up while I go, “Where is Poppy?!” She then rips the blanket off of her head and says, “Here I am!” or more like “Ger baa mmmm” which totally means “here I am” in baby talk. We had been playing this game for about 10 minutes when all of a sudden I looked over just in time to trip over her blanket and fall on a sharp corner of Nana and Papa’s fireplace. A corner that I always knew was going to get one of you kids, sooner or later. I ran over and picked her up to make sure she was o.k. She was crying really hard. As I examined her, I saw that the corner of the fireplace had missed her eyeball by about an inch. The lower corner of her eye had turned a shade of black and blue almost instantly and it was starting to swell up. I yelled for Quinn to go and get me a first aid ice pack but he had to go outside instead. He couldn’t stand for one second seeing Poppy hurt. I grabbed the ice pack, a popsicle, and headed outside to try to calm her down while we sat on the porch. She stopped crying after a few minutes as I continued to hold her and tell her how sorry I was. Quinn came walking back over asking me if she was going to die. I wanted to die right then and there. It makes me sick that his little mind immediately goes to the worst of all places. I told him that Poppy was not going to die (the same way I told him that about you, fucking fuck fuck fuck) as we sat together and watched her little eye get worse and worse. I texted your daddy and Nana a picture of it to let them know what had happened. Your daddy joked and told me he was going to call CPS on me, your Nana flipped out. I tried to make as much light of the situation as possible (hey at least it’s not cancer) but I was silently freaking out myself. It just wouldn’t be until later that night that I would come to realize how much this little fall of hers was going to impact me.

I fell asleep that night pretty late right next to Poppy the same way I have done every night since she was born. You know, with her right by my side so I can check her breathing every hour on the hour. (insert psycho mama here) I think I dozed off only to jolt out of bed because of an old familiar feeling a couple of hours later. My eyes immediately went over to Poppy. Oh my god. Her eye now looked sooooo swollen. So black and blue. So much like yours right after you had your first surgery where they removed the mass that had metastasized right above the left orbit of your little eye. That surgery where you looked at me and without a word I could hear everything you were saying which in my mind was, “What happened? I was just running around fine a few days ago. What did you let them do to me? How could you let this happen? You are my mama, you are supposed to keep me safe.” I heard those words over and over again in my head. I curled up in a ball, grabbed a pillow to smother my sobs, and sob is exactly what I did for the next few hours. I sent an email to Dr. Jo around 5 a.m. She responded almost immediately and called my phone. I told her what had happened, the reaction I was having to it, and let her gently guide me through it. HELLO PTSD that nobody talks about after you lose a child, except Jo.  She  We made a plan which mainly just consisted of me acknowledging my grief, nurturing my grief, and getting through the day. I hung up with her once again telling myself how lucky I was to have found her and let her words sink in and prepare me for my day ahead.

We were set to leave Nana and Papa’s house to all go on a family vacation to Bend, Oregon. Nana, Papa, your daddy, brothers, Poppy,- my amazing step-sister and niece would also be with us which we were all so excited about. I spent the morning running off of the few hours of sleep and trying to get everyone packed to leave. I completed all of my tasks, running around, feeding Poppy, making everyone shower while I just lost my shit as there was no containing what I was physically experiencing. Your brothers came and checked on me as I handed Poppy off to Nana while I went and sat on the couch and continued to sob. Quinn rubbed my back. Liam kissed my cheek. I smiled at them both and told them I loved them. Soon it was time to leave for our vacation. I hopped in the backseat of my stepsisters car with Nana and Poppy while the boys and Jady girl went with Papa Jim. I was so thankful I did not have to drive. Between my now raging headache and my tears, I would not have been able to. I spent the new 5 hours in the car feeling like I was massively hungover and when we got to Bend, I headed straight upstairs to rest. I was so thankful to have your Nana there, to help with Poppy and let me cry on her shoulder. I was so thankful for the non-judgement that came from everyone about my little episode. I guess that is why I was able to just let everything out and not feel uncomfortable doing so. I never feel judged around my family and that is the best gift they have ever given me. It means everything to a grieving mother because my grief and pain is something that will be with me for the rest of my life. I am not going to be ashamed of that and I am not going to hide it. To love something so deeply that it makes you feel so much pain is a badge of honor that I will always wear as it is a constant reminder of my love for you.

Another reason the day was so hard was because it was another family trip without you. That hurts so much and I still look for you everywhere.

I have to end this now. I have been trying to finish this post for weeks. Now I have to move on to this Empire State Building stuff. I’m sorry to cut this short, but I need to just get this posted. I feel so badly that I have not written on here in so long. I miss you and this blog so much.

G’nite baby boy. I miss you. I love you. I hope you are safe.

xxoo

Huffington Post and The Empire State Building

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Through Ronan’s story, I have come to know the most beautiful people who are so passionate about this fight. I am so proud to call this little gem, Rainesford Alexandra someone who inspires me everyday to be a better person, leader, and fighter. If this is what our youth of today looks like, our world is going to change in a very bright and beautiful way. Thank you sweet girl for all of your help, friendship and passion. Please share this story and know that together we will change this. I am determined and hopeful that we will see The Empire State Building, Go Gold. xxoo

http://www.huffingtonpost.com/rainesford-alexandra/will-the-empire-state-bui_b_5664993.html

I promise you all…

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I have been in the middle of writing on my blog for weeks now, but I have had so much to say that my post has gotten insanely long.  I was going to try to finish it tonight, but between being so wiped out because all of my babes are sick this week, book writing, and very little sleep… I don’t know if it is going to happen.  I also now have to write a blog post about something that I am VERY upset about which is going to cut into my updating you all even more.  In the past, I have requested to have the Empire State Building lit up Gold for one night during the month of September to shine awareness on childhood cancer.  My requests have always been denied for some really lame ass reasons.  They light it up for pretty much every cause out there, but apparently childhood cancer is not good enough to be one of them. Last night it was lit up green for the new Teenage Mutant Ninja Turtles (Go turtles!) Seriously, WTF? You can light it up for a movie, but not real life heroes like kids who are fighting cancer??

I am LIVID and I am in the middle of writing a “DEAR EMPIRE STATE BUILDING” blog post, but I am not sure if I will have the stamina to finish it tonight.  I am not the only one upset about this.  The whole childhood cancer community is in an uproar and is blasting this all over social media, but whomever is running the social media for the Empire State Building keeps deleting all posts related to why they should go gold for one night during the month of September. I am going to leave you with this post tonight, written by somebody else until I can finish my own.  We need to get moving on this. We need them to do the right thing and change their minds. I know the hard way how little attention childhood cancer gets.  My son died because of it.  Lack of awareness equals lack of funds and lack of funds is why childhood cancer is the number one disease killer in America.

Please help us out in whatever way you can.  Make phone calls to the media about this, leave comments on the Empire State Building’s Facebook Page, Tweet this, anything you can think of to let them know that we are not going to just go away. Our kids fighting cancer do not have a voice. It is up to us as adults to advocate for them. Please use the hashtag #empiregogold. I truly believe if we all come together, they will do the right thing.

WHY THE FUCK IS THIS SO COMPLICATED? ALL I WANT IN THE LIFE BESIDES MY SON BACK IS FOR NO OTHER CHILD TO EVER HAVE TO GO THROUGH WHAT RONAN WENT THROUGH AND NO OTHER PARENT TO HAVE TO KNOW WHAT LIFE ON THIS EARTH IS LIFE BECAUSE THEIR CHILD IS DEAD.

Childhood Cancer needs all the awareness it can get, otherwise things are never going to change and that is just an unacceptable world to live in. I won’t stand for that and anybody that knows anything about this world, shouldn’t either.

Thank you all always for all that you do. This is a war that cannot be won alone. New York is my favorite city in the world and I am truly hoping this can be turned around in a positive way.

I promise to post soon.  If Poppy will get off my boob so I can actually finish typing. For now, read this.  Get mad, get angry, don’t stand back and do nothing. Please. I am begging you.

 

 

xoxo

 www.speakingupforchildhoodcancer.wordpress.com

 

If you have a little time on your hands…

266169447c562500c9b40e39139ec76b         Rockstar Ronan was nominated for “Battle of the Blogs” on Arizona Foothills. Thank you to the lovely person that nominated me.  Also, thank you for being so patient with me while I work on this book. I promise you all it will be worth it!! Battle of the Blogs 2014 Rules & Regulations * Voting is unlimited * Voting runs until July 28, 2014 at 11:59 PM (MST). * The TOP 4 blogs with the most votes will be announced as the winners * Winners will be contacted by Arizona Foothills staff after July 30th. Prizes AZFoothills.com pages for one week, be featured in AZFoothills.com E-newsletters, get an editorial mention in Arizona Foothills Magazine, snag some super social media promotion, and be given a very special guest blog spot! – One full week as the static banner ad on all the pages of the website – Features in AZFoothills.com E-newsletters, which are sent to 75,000+ subscribers – An editorial mention in an issue of Arizona Foothills Magazine – Social media promotion on Arizona Foothills Twitter, Facebook, and Instagram handles – A guest blog spot on AZFoothills.com Vote if you can! Thank you so much! xx   http://www.arizonafoothillsmagazine.com/battle-of-the-blogs/voting/2.html

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

The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.

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Ronan.  I didn’t die from the fuckwad of May dates that I had to get through.  The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it.  We went away for May.  It was as good of a trip as it could possibly be, despite the circumstances.  We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright.  On the day you died, I didn’t sleep much.  I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that.  I said what I always say which is how I hope he never forgets how much you loved him.  How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now.  He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.

“Are you o.k.? That is a stupid question. I know you are not.”

I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason.  I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was.  I thanked him for calling and told him to please go and do something for you today, besides work.  He said that he would.

We spent the majority of the day, outside in the cooler temps by the ocean.  We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool.  We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter.  Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge.  Now I am able to dance and sing to it and I know that is all because of her.  How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.

We spent your birthday in the city.  We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House.  We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer.  Your daddy hadn’t met Scott before but they talk a lot on the phone.  I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world.  It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday.  She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.

After our impromptu meetings, we continued to do all your favorite things in the city.  Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis.  It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day.  Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down.  She seems to have turned a corner since turning one and I’m not sure there is any going back.  Miss Independent EXTRA spicy Poppy it is.  I, of course wouldn’t have it any other way.

We walked as much of the city as we could.  Stopped for a little pit stop in Central Park so Poppy could actually do some real running.  I plopped down in the grass, exhausted from a beyond mentally exhausting day.  Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky.  After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see.  My little, Rachel, came walking over soon after as she had been trying to find us in the park.  Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright.  I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets.  I had to do something spicy, so I climbed up the tree and sat there for a bit.  I can’t remember the last time I’ve climbed a tree and I wonder why.  It was lovely up there and so something you would have done.  At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time.  We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time.  I told them I wanted to drop them off to give out to the family’s that were staying there.  I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this.  I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love.  I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.

Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours.  You always will be mine, even if you are not here but somewhere else where I know I will see you again.  I wish knowing that made things hurt less, Ronan.  Sometimes this pain is all too much.

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

On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.

That soft touches will change you and stay with you longer than hard ones.

That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.

That you control that completely.

That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.

That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.

That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.

That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.

That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.

That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.

That rain is beautiful.

And so are you.

 

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  • Instagram is my BFF

    This just made my day. 
#Repost from @chloegoulden13
--- OKAY HI. So, as you probably know I am a huge advocate in raising awareness and funds for childhood cancer. Childhood cancer is the number one disease killer of our kids, with 46 kids being diagnosed a day and 7 dying a day in the United States alone. It receives next to no funding federally, and is swept under the rug because it is too sad. Well things have to change. The Ronan Thompson Foundation is a beyond amazing foundation in honour of Ronan Thompson who died at age 3. And through Taylor Swift and Maya (his mama) I've learned Ronan's story and become aware of the tragedy that is the world of childhood cancer. SEPTEMBER is childhood cancer awareness month and the colour is GOLD (official in HRM, HOLLA!🙌) and I intend to do my part. The #BeBoldGoGold campaign (created by Maya Thompson and Kassie Rehorn of the Ronan Thompson Foundation) is designed to spread awareness about this terrible disease in a fun way. Deck yourself out in gold and educate people, challenging them and your friends to do the same. This month I vow to do that... Through running. Throughout September, I will run as many races as need be to reach 50 kilometres (or 31.1 miles for all you American lovies) and spread awareness at each race. However, while awareness is great, funding is even better. So there will be a page set up where you can sponsor me throughout the month and support the cause. All money will go to the Ronan Thompson Foundation and the IWK Foundation to help kids locally and internationally, fight cancer. To learn more about it, go to www.facebook.com/chloesraceforgold or click the link in my bio. There will be a schedule, info and a place you can donate. Ronan, I am so sorry this happened to you. We will fix this broken world. #ronan #beboldgogold #theronanthompsonfoundation #iwk #halifax #fucancer #heshouldbehere Join us in the Be Bold Go Gold Challenge! Snap a pic of yourself all decked out in your gold and nominate some brave souls to do the same! @beboldgogold  I was nominated to do the #beboldgogold💛 and I nominate @mamamaya @knjoy and @woodythompson75. #rtf #empiregogold #ronan I totally have the best 11 year old in the world. #ronan #fucancer #nutellaordie #notdramaticatall @knjoy
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