Dear Empire State Building, Part 2

10390438_837764789569164_8069726864944176789_n

 

 

 

An Open Letter To Anyone Who Cares To Read It:

My name is Kassie. I am twenty-three years old. Like many around my age, I graduated from college this past year, and like even more people my age, I spend almost all of my time working an ungodly amount of hours at my first full-time, salary paid job (a job which I absolutely adore, by the way). When I do have a day off, I enjoy hanging out with family and friends, hiking, watching movies, and catching up on errands and laundry (and sleep!); in a lot of ways I guess you could say that I’m pretty much like every other kid (adult?) my age. I had a great childhood, I have two incredibly loving, strong, and supportive families, and I have a little brother who was diagnosed with a very rare and aggressive form of childhood cancer called Synovial Sarcoma when he was fifteen years old. It’s that last bit, the having a brother with childhood cancer bit, that has shaped me the most as a human being and made me who I am today-a strong and determined young woman who passionately advocates for children with cancer and works with a non-profit organization with the goal of funding life-saving research and clinical trials to ultimately find a cure for cancer and save the lives of cancers youngest and most vulnerable victims: children.

August 31, 2010: I was a sophomore at Arizona State University and had just gotten out of my last class of the day. My best friend Ann had just been diagnosed with Stage 4 colon cancer two weeks prior. I pulled out my cell phone as I walked across campus to get to my car. There was a text message from my dad that consisted of just seven words, “I need you to call me, ASAP”. An overwhelming feeling of dread filled me. I called him and he answered almost instantly. My dad’s voice was shaking. Was he crying? Was he mad? What was that sound in his voice? My dad proceeded to tell me that my grandma had just been diagnosed with breast cancer. He explained that even though it was scary they thought they had caught it early and she would get surgery and then chemo and the chances that she would beat this were good. I felt my stomach drop and told my dad how sorry I was. I automatically went to the positive, “So she has a good chance of being okay, right? She can make this. I know it.” But my dad didn’t answer my question. Instead he drew in a shaky breath and proceeded to tell me that there was more. It was my brother, Coleman. He had cancer too. Disbelief and shock hit me in the gut so hard I literally felt as if I’d had the wind knocked out of me. I do not remember the rest of the conversation I had on the phone with my dad that day. I just remember a tall kid with brown hair and sunglasses looking at me like I was crazy as I stumbled into the gravel and managed to find my balance by grabbing the nearest palm tree. To this day I find it odd that I remember exactly where I was, near the end of Palm Walk right by the SRC Fields on campus yet I can’t remember a single word my dad had said after telling me that my little brother had just been diagnosed with cancer. All I remember after that was being so dizzy that walking felt dangerous. I do not remember the drive home to my apartment, I just remember walking up the stairs to my complex, opening the door and barely managing to tell my best friend and roommate, Hannah, the news before collapsing into her arms in heaving, uncontrollable sobs. I may have been twenty years old but my best friend sat on the ground holding me in her lap as if I were a child. I will never forget that day.

Today-Sunday, August 17, 2014: In just fourteen short days, it will be exactly four years since my brother’s initial diagnosis. A lot has happened in those almost four years. I lost my best friend Ann to the terrible monster that is cancer. I learned about and was adopted into an entire community of families with children who were battling cancer. I changed my major so that I could go on to help children and their families understand their child’s diagnosis and be a shoulder to lean on and resource to help them navigate through the absolute uncertainty that is childhood cancer. I forged an even deeper bond with my little brother who never ceased to amaze me at how selfless, giving, hopeful, and inspiring he could be. I did a lot of research on my brother’s cancer as well as childhood cancer in general. I found a blog written by a mom whose son was going through treatment for cancer and through her words found someone else in this world that understood my complicated feelings and experiences in this cancer journey and helped me to find my own voice and become a huge advocate for childhood cancer. I began to raise money, attend events, and eventually work with The Ronan Thompson Foundation to make meaningful change in this world. I had a few birthdays. I sat with my brother one night as he told me he was roommates with a little boy in the hospital who was also going through chemotherapy and that he would give his life if it meant that little three-year old could survive his battle because “at least I’ve lived fifteen years and that’s a lot more than three”. I connected with the mom of Ronan Thompson, the woman behind the blog that had given me a voice when I was at a loss for words and helped me to find the courage to speak my mind on behalf of the kids who were suffering, even if that meant having people disregard me or tell me that what I had to say was too sad to be talked about. I became best friends with this woman, and only after meeting her for the first time did we realize that my little brother and her son had been roommates at Phoenix Children’s Hospital when they were receiving chemotherapy. I mourned the loss of a little boy with sparkly blue eyes that I had never met, yet had changed my life forever. I watched Taylor Swift sing her brand new song, Ronan, on the Stand Up To Cancer Telethon with Ronan’s family and friends as we all watched in awe with silent tears pouring down our faces. I attended two (soon to be three) Gold Parties in September to raise money for funding and research for new treatments for Neuroblastoma. I watched my brother’s hair come back, I watched him go back to playing sports and attending school and being a normal teenager while thanking the universe for every single second I had with my brother, healthy and happy. I watched my brother graduate from high school with tears in my eyes, overwhelmed with gratitude to witness this milestone when so many kids with cancer don’t make it. I graduated college and watched my brother go off to his first year of college. I laughed. I cried. I hiked. I ran two half marathons with no training to honor Ronan, my brother, and to raise money for Ronan’s foundation. I held my breath every time my brother went to the hospital to get scans to make sure his cancer stayed away, and I had my breath knocked out of me for the second time when after almost three years cancer free, scans came back with news that it was back again.

Like I said, a lot has happened in those almost four years. Maybe the most important thing that has happened is that I have witnessed the impact that one person can have on the world around her when she is brave and bold enough to stand up and speak out about the atrocities going on around her each and every day that everyone else is too scared, intimidated, or devastated to talk about. I have learned that when one person is brave enough to stand up in the face of adversity and shine, it subconsciously gives others the permission and power to do the same. I have come to know what it is like to have a person you’ve never met before completely change your life. I have also come to know what it is like to have someone tell you that your compassion, dedication, and courage has changed their life forever. I have watched the childhood cancer community that I was adopted into four years ago evolve and change, becoming more cohesive, recognized, and powerful and I have watched our community use that power to positively and passionately enact change that had lead us in the right direction, on a path that leads to a future where children getting cancer is only something you read about in history books. We have a long road ahead but there is power in the baby steps we have made towards our goal. There is so much work yet to be done but I can promise you we are not losing steam; we are only gaining momentum. Our biggest roadblock is in a lack of understanding and awareness that childhood cancer is not a rarity. 46 children are diagnosed with cancer every single day, and seven children will die from cancer today alone. Another obstacle we as a community face is that the general public finds childhood cancer too tragic a topic to broach meaningfully, let alone superficially.

While I will not speak for the childhood community as a whole, I can speak for myself, as the sister of a cancer fighter. All I want is to turn around the odds for kids fighting cancer. I want our society to finally decide that although talking about childhood cancer is extremely sad, devastating, and sometimes uncomfortable, we are more horrified and uncomfortable with the fact that thousands upon thousands of kids are dying from this disease and because of this we decide to shed light on this topic and force ourselves to ask the hard questions and demand answers and better funding for our kids. I never want another family to have a doctor tell them their child has cancer. I never want another parent to watch their child die in their arms. I want to fight for a world where children make it out of childhood alive. I want my little brother to be given the chance to get better and stay better, to know and experience all the many ages and stages of life, I want him to get a full and long lifetime on this earth.

The childhood cancer community I belong to is a passionate, dedicated, strong-willed, and extremely vocal one. But one thing we are not is violent, malicious, or ill wishing. I can promise you that any person who has ever loved someone with cancer is not capable of wishing the same on any other person, ever. I could not and would not wish cancer on anyone, no matter who they were or what they have done and the thought alone makes me feel sick to my stomach. The individuals I have met in this community of people brought together by cancer are some of the kindest, most compassionate, awe-inspiring, absolutely amazing human beings I have ever encountered. They are the kind of human beings that give me hope for a brighter future not just for our kids but also for the world in general. While we will not give up on what we are passionate about and have more fight and will power in us than any other group of people I’ve ever known, we do not use that fight and will power to tear others down, make threats, or tarnish others reputations. To do so is not in our nature and it is not in any way related to our ultimate mission: to find a cure to the many different cancers that afflict children and stop other families from feeling the pain that we have. Our goal, our fight, our mission has always been and always will be to find a cure to the merciless disease that continues to kills our sons, daughters, sisters, and brothers. It has always been about our kids, and to make it about anything other than that is something we will not stand for. Whether childhood cancer has affected you personally or not, I ask you, I beg of you, to advocate for our community in a way that your own child would be proud of. It is indeed possible to fight for our kids with passion, spice, and determination and also do so gracefully and in a way that is not malicious or harmful to others. I want our community to be known for the leaps and bounds we made in the research and treatment of childhood cancer and ultimately for curing childhood cancer. We are a group of people who despite unimaginable tragedy continue to come together, support one another, and lift each other up to make meaningful and lasting change in this world and overcome seemingly insurmountable odds. We are not the bullies that were addressed in the Empire State Building’s press release today, and if you have joined our community fight with the intention of being malicious and threatening, our cause is not one we need or want you representing.

Each and every day I will live with love, compassion, and strength. I will be a voice for the voiceless and I will represent our children fiercely but with integrity, respect, and grace. Thank you to everyone who has helped us in our fight for a future where childhood cancer does not exist. Thank you to the childhood cancer community that embraced me from the day of my brother’s diagnosis four years ago. Thank you to the incredible people I have met during this journey that have inspired, strengthened and loved me along the way. Empire State Building, we are not the bullies you addressed today in your statement. We are not the abusive and ill wishing “childhood cancer advocates” you talked about. While our fight to light up the Empire State Building in Gold for Childhood Cancer Awareness month is far from over, our plan of attack will never include threatening, demoralizing, or attacking any human being, whether they choose to help us shine a much needed light on the world of childhood cancer or not.

Stay Gold,

Kassie Rehorn

IMG_9886

Huffington Post and The Empire State Building

0937b38505e73d7fbba4cf08eba0445d

 

 

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…

photo

 

 

 

 

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.

7caab45ae7493013e214e3ddb5154573

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.

10256514_701462539888784_6005931057056608011_n

“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…

af0d731b263b93ea74262a4fe3679385

 

 

 

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.

 

RTF stack logo rgb

Wait… Poppy is one? How did that happen already??

c2cb6641129278b1e1c0d733e3db7d37

 

 
Ronan. I don’t live in a normal world anymore. I live in a world that I often feel very alone in, but I tend to do alright in this world. This world without you is so hard for me to live in, but I have done my best to make it bearable by living each day as fully as I am capable of because I know how precious each day truly is. You might say this new perspective has given me a clarity I never had before and I myself as a human being generally feel pretty fulfilled; minus the always absence of you in my life. I keep you tucked away as close to me as possible and carry you with me in everything I do which seems to get me through the toughest of times.

I was at lunch the other day and ending up sitting next to a table full of mom’s who were doing PTO stuff for their kids’ school. I knew a few of them so of course I waved, but I really wanted to just curl up and cry. I glanced their way every so often and could hear them talking so excitedly about the money they had raised and the upcoming fundraiser they were putting together. What it must be like to be able to live that life of a normal, no cancer has ever touched their kids, PTO mom. My mind wandered back and forth between “I wonder if this is what my life would have been like if cancer had not killed my baby” to “Please let Nela beat this cancer once again, Ronan, as her mom just told me she has relapsed.” You see, even when I try to do normal not cancer mom things, it’s almost impossible for my mind to just let go of the swirling thoughts I have about you, you getting cancer, you dying, all the other kids that I know are being diagnosed, the ones who are not doing well, etc… I have come to accept the fact that I cannot do it all and I’m just no longer cut out to be the PTO mom because that life as I maybe would have known it, flew out the window a long time ago and I don’t see it coming back anytime soon.

I have a 23-year-old best friend. A 37-year-old best friend. And a 68-year-old best friend. The three of them all entered my life because of you. My relationships with them are each so different, so unique and so special. Not only do we have one common denominator in our lives, which is you; but we also have another one which is this fucked up world of childhood cancer. My 23-year-old best friend sleeps in your bed a lot. She pretty much should just move in with us at this point and if I did indeed have a guest house, I would totally let her live in it. We do a lot of silly things together which mostly consists of drinking too many Kale drinks in one day and having ridiculous dance parties to really bad rap music with Poppy. We also do a lot of quiet things together, too. We hike a lot while we ponder stupid things like, “If you could come back as a boy or a girl in your next life, what would you be?” We do a lot of intense things like cry on the phone and kick and scream and cuss about things that are so fucked up but are not my things to talk about on here. She sends me poetry in the middle of the night or things she is reading out of books and I do the same for her if something really strikes me as so painfully beautiful, that only she would understand. I am watching her in the world as she walks through it and I swear sometimes I see you holding her hand. She is all things magic and beauty and makes my heart sometimes skip a beat. I thank you for her every night in my head. She is my little renege side kick in life and I am so lucky to have found her, because of you.

I also have your New York Miss Macy who you actually did know and love to pieces. She is my sounding board for everything in life and the one I probably cry the most to. She is also the one I laugh with the most. Without Macy, I’m not sure where I would be in this life without you, but I’m pretty sure it wouldn’t be in the place I am now. She keeps me grounded and reminds me that it is o.k. to be sad with someone other then myself. She is flying in this weekend to celebrate your Poppy sister and also because I got us kick ass tickets to the Lana Del Rae concert who is my musical soul mate in life. I cannot wait to have her here and I know Poppy is so excited about seeing her other mom:)

Last but not least is your Sparkly who I can say without a doubt, saved my life. I could write a novel about him but I’ll just talk about yesterday instead. Yesterday was Poppy’s birthday. Her first birthday. Can you believe that, Ronan? I don’t know how she is one already. I wasn’t sure how I was going to be feeling yesterday, so I didn’t make any big plans. I woke up to the sweetest messages from so many people wishing her a Happy Birthday which was so nice, so thank you all. We had a quiet morning at the house just the two of us and ran down to see your Sparkly so he could see his god-daughter on her special day. We brought him a coffee, just like you used to always want to do for him. We sat and talked while your Poppy sister crawled around between the two of us while I opened up the little gift and card he got for her. I was trying my hardest not to cry and I know he could tell I was getting sad.

“Are you going to be o.k. today?” he asked me while I did my best to look him in the eyes as I answered his question.

“Yeah. I’ll be o.k. I just wish Ronan could be here.”

He responded with, “I know you do. I do, too. I’m sorry he’s not, but today is her day and I know he would want her to be celebrated the way she deserves to be, so please go and do that for her.”

Your Sparkly has such a way of being able to recognize my sadness, but can also put things into perspective for me in a way that doesn’t piss me off. He’s is pretty much the only one in my life that is capable of doing that.

I told him I would celebrate your sister and so of course I kept my word.  Of course Poppy should be celebrated, but I live in this world where the most beautiful things are also so very bittersweet.  I had to sing your sister Happy Birthday last night and you were not there to do something naughty like smash her cupcake all over the floor.  I just don’t think I’ll ever get used to that or I won’t ever be sad about that, but I could not let my sadness take away from her day at all.  That would not have been fair to her and I know it’s not what you would have wanted.

I ran and picked up Brianna from ASU. We took Poppy to Toys R Us to get her some gifts. I got home and wanted so badly to just throw in the towel and order a pizza instead of cooking the spaghetti dinner that Quinn had requested. I kept hearing your Sparkly’s words in my head. I cooked dinner and we spent the evening outside playing basketball and watching Poppy have a dance party because that is her favorite thing to do in life. Kassie and Brianna stayed the night and we gathered around to sing your sister while a purple star balloon floated behind her, just to remind us all that you are always here. Always. It was a very sweet and simple day as that is all I think any of us could handle.

Today is 35 months without you and today was not a good day at all. I cried a lot. Your daddy cried a lot. I felt extra lost without you today and I don’t know how next month is our hell month of May already and 3 years since you’ve been gone as well as your 7th birthday. God, what I would give to see you as the beautiful 7-year-old that I know you would be. We are going away for May because being in Arizona is never a place that I want to be on the day you died and your birthday. We all need a little time out together so we are going to the Hamptons for a bit where we will see some dear friends, but also be together as a family.

I have to say goodnight now, Ro baby. I’m tired and need to try to get some sleep as I am beyond ready for today to be over.

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

xoxo

 

 

Thank you for her.  She is such a gift to us all.  Happy 1st Birthday, Poppy Roo. We love you, Ronan.
Thank you for her. She is such a gift to us all. Happy 1st Birthday, Poppy Roo. We love you, Ronan.

 

 

Taylor, you will forever have my heart. Thank you for continuing to be such a voice for these kids. I love you.

ad3d80a23626de2dc4b611fb59f49f00

 

 

http://www.huffingtonpost.com/2014/03/24/taylor-swift-visits-cancer-patients_n_5021039.html

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.

photo 6

 

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