Are You There, Empire State Building? It’s me, Maya.

IMG_8478-0Dear Empire State Building,

About a year ago, a formal application was sent in on behalf of The Ronan Thompson Foundation requesting that one night be lit up Gold to bring awareness to all types of childhood cancer. You see, my son Ronan, died just shy of his 4th birthday from Neuroblastoma, which is one of the deadliest forms of childhood cancer out there. The awareness color for Neuroblastoma is Purple and also just happened to be Ronan’s favorite color. When I filled out the application, it didn’t even cross my mind to ask the Empire State Building to be lit up Purple in honor of my son or any other child out there who had died from this particular form of cancer. I instantly wrote down Gold because it represented ALL 46 children who are diagnosed each day and ALL 7 of them who will die from this disease every single day, as well as the survivors. The color Gold represents all these kids, together creating an umbrella the world of Childhood Cancer so very much needs. You can imagine how heartbroken I was to get our application back to see that it had been denied. To whomever the person was that had to check that box off and make that decision, left me filled with so many questions.

How was this decision made and why? Did the people making this decision really know and understand the world of childhood cancer? Had they ever stepped foot on a children’s oncology floor? Did they know childhood cancer is the number one disease killer in America of our kids? That it kills more children than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined? How over the past 20 years, only two new pediatric cancer drugs have been approved and how these kids receive hand me down adult chemos instead? How less than 4% of the National Cancer Institute Budget goes toward Pediatric Cancer Research? How these babies, toddlers, teenagers and young adults are repeatedly ignored in this world and many of them are too little to have a voice of their own? Maybe these childhood cancer statistics were well-known, but seemed so overwhelming and sad that nobody at the Empire State Building wanted to step up to take on this issue. I have heard from others before that childhood cancer is just “too sad,” and watched as they went back to living their lives of looking the other way. You know what else is “too sad?” That because of this kind of thinking, most of these kids will continue to be diagnosed and die just like my son due to the lack of awareness. Awareness that you could have helped raise with the sixteen million colored LED light system you had installed just to help out important causes such as this. Instead in the past you have chosen to light it up for “causes” such as a Westminster Dog Show, football games, the release of a Mariah Carey Album, and the Teenage Mutant Ninja Turtles 25th Anniversary. All of these past applications were approved, but why not the many that have been sent in from all the different childhood cancer organizations? Why would you not light up for a cause that would help bring awareness and save children’s lives? Are you really going to tell me that a blockbuster movie or the release of a new album is more important than these kids who deserve to grow up and have a future? Are you really going to tell me a dog show is more important than my son? I would really like a face to face meeting with the person who could look this broken-hearted mother in the eye and tell me that. By NOT lighting up the Empire State Building in Gold, that is pretty much what you just did. You basically just told me my son did not matter. I am here to tell you he DID and he DOES.

Maybe if you were to really hear a story, a true story you would change your mind. Meet Ronan. Ronan the absolute love of my life (as well as my other 3 kids that I am lucky enough to still have). Ronan was born healthy and grew into a little boy who would stop people dead in their tracks because of his drop dead gorgeous looks and huge blue eyes. Beyond his looks, he was a soulful little boy who lived his life being fearless, wild and free. I nicknamed him my “spicy little monkey” due to his feisty personality. For the first three 3 years of Ronan’s life, he was perfectly healthy. We lived a beautiful life where childhood cancer didn’t even cross our minds because the lack of awareness left us ignorant and blissfully blind. During the time Ronan was here any healthy, we had no idea that September was Childhood Cancer Awareness month or that Gold was the awareness color. We were not aware until we had to be aware and that is one of the biggest problems that childhood cancer is facing today; that nobody is aware of the epidemic that it really is, until it happens to them or someone close to them.

Ronan’s diagnoses came out of nowhere. One minute he was running around acting like a normal three-year old boy and the next minute we found ourselves at our local hospital where we were told Ronan had Stage IV Neuroblastoma. As you can imagine our world was turned upside down and we were thrown into a world that I would not wish on my worst enemy. The sad and scary, dark world of childhood cancer that people like you, are just not talking about. A treatment plan was put into place for Ronan as we consulted with the best hospitals and doctors in the world for the specific type of cancer he had. In the beginning, I was filled with so much hope as I was just sure my son was going to survive. There was no way my son was not going to beat this and there was no way his story was not going to be a statistical success. Ronan dying was just not an option. At first his cancer responded very well to the adult poison that was supposedly saving his life. We made it through the first five rounds of chemo and the scans showed major improvement. It was only after the scan right before he was set to go into stem cell transplant that we would come to find out he had too much cancer left in his body to continue on with the treatment plan our doctors had mapped out for us. That course of treatment was no longer working, so a new plan had to be put into place to save my baby’s life. We ended up back in your city at Sloan Kettering where Ronan had been just a few months earlier while we had the base tumor removed out of his abdomen. Ronan and I fell in love with New York together during our time out there. It made us braver, stronger and filled us with so much hope that he was going to beat the odds. I was convinced between our doctors, your city and the unbreakable bond between a mother and a child, Ronan would surely come out of this as a survivor. We started Ronan on a different more aggressive chemotherapy which left us inpatient at Sloan Kettering for 28 days. Soon after that we were told Ronan’s cancer was no longer responding to chemo and I had to walk out of Sloan Kettering, clutching onto my child knowing that his life was going to end.  Please stop right here for just a minute. Close your eyes and repeat that last sentence while placing yourself in my shoes.  I do not want to explain to you how horrific of a moment that was for me, so the best I can do is ask that you just imagine it and then try to go on about your day.

I often felt as though Ronan was being experimented on like a lab rat and I didn’t understand why more strides hadn’t been made in the world of childhood cancer. I quickly learned it was because childhood cancer seemed to be a dirty little secret that nobody wanted to talk about. If nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and these kids will just continue have the same outcomes that they are now, which are grim at best. I proudly stood by Ronan’s side for 8 months and often times I felt so broken, tired and weak to continue on. I would often look to him for strength. His little light would inspire me to get back up and continue to fight. Even after all the awful chemo, surgeries, radiation, vomiting, “pokies”, broviac dressing changes that would leave him screaming, “I NOT A BRAVE BOY!!!,” he always held his head with such pride and dignity, never wanting to show me how scared he really was. It was as if he knew that not only did I need his strength then, but I would need it for the years to come when I would have to live this life without him. After eight months of watching Ronan fight with everything he had, I started to see the way that cancer had eaten away at his little body, leaving him a shell of what he once was. Ronan died just three days before his fourth birthday. Right before he left, I made him a promise. I promised him that I would continue to fight for him harder than ever until the world of childhood cancer changed in a very big way. That means more awareness, more research, more funding and more cures. I never want another child or parent to go though what we have had to go through. Ronan deserved better. All the other kids out there who are dealing with this, deserve better. Things have to change and until they do, I plan on fighting the only way I know how. The way that Ronan taught me– by being as spicy and fearless as possible.

This brings me back to why this whole post got started in the first place — that little lighting request that got denied. September is right around the corner and through social media, I started to hear the soft little roars from other parents in the childhood cancer community who had requested the same thing, only to be denied. One from an individual, and quite of few from other childhood cancer non-profits. These soft little roars soon started to become louder and louder and it seemed as if the entire world (at least in my mind) finally cared about this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all social media pages of the Empire State Building. They became outraged when they noticed that their posts about anything childhood cancer awareness related, started to disappear as well as pictures of their children. Children who were currently in treatment and even the one’s who had sadly died from this horrific beast. It was a slap in the face to the many of us that are trying to change this. It was as if once again, our children didn’t matter and this “dirty little secret” was expected to be buried and die. The community of the childhood cancer world was not going to stand for it. After a week of the Empire State Building doing nothing to address the cries of thousands of people, an official statement was finally released:

The Empire State Building makes the following statement on behalf of its employees.

Recently, an individual requested a tower lighting for childhood cancer awareness. It is clearly stated on our Lighting Partner Application on our website that the Empire State Building does not accept lighting requests from individuals. A social media campaign has been launched to lobby for this individual’s request with a false pretense: that the Empire State Building does not care about children with cancer. Nothing could be further from the truth.

In support of organizations which help people suffering from this terrible disease around the globe, the Empire State Building has provided lighting for “World Cancer Day” in partnership with the American Cancer Society, whose mission is to eliminate all types of cancer; for breast cancer awareness, with the Breast Cancer Research Foundation; for blood cancer research, with DKMS Delete Blood Cancer; and for pediatric cancer treatment and research, with St. Jude’s Hospital.

Sadly, there are over 200 different forms of cancer—in addition to all of the other diseases and tragedies for which we receive Lighting Partnership Applications. Each of us has a personal cause which is important, and many of our employees have had direct personal experience of loss from cancer as well as other personal health tragedies.

The Empire State Building is making this statement because this social media campaign has become abusive. Empire State Building employees have been personally attacked on the phone and harassed by e-mail and the internet by people who do not know them with profanity, threats, bullying and, perhaps the worst, wishes that they “get cancer.”

The Empire State Building is privately owned. All Lighting Partnership requests go through an application review process. There is no lighting in 2014 for organizations which address childhood cancer. Organizations which behave responsibly may newly apply for a Lighting Partnership in 2015 and future years.

I read this on Sunday when I was trying to take a break from all of this madness. I only wanted to enjoy watching my 11-year-old twins play basketball. My twins who play their hearts out for their dead little brother who will never get the chance to do so. You want a prime example of how kids turn out to be so great? It’s in the eyes of my twin boys who know too much pain and sadness due to the death of their baby brother. They go forth in everything they do carrying the brother that they loved more than anything on earth with them because he is no longer here. So, on the days that I have to wipe the tears out of my 11-year-old eyes as he is standing on the court getting ready to play in the big game as he looks up at me and says, “I wish Ronan were here to see me play…” I somehow have to muster up the strength not to vomit all over the court but instead kiss his forehead, wipe his face and say to him, “I promise you he is watching everything you do and he is so proud.”

The Sunday that I read the official response from the Empire State Building, I felt my knees go weak and the color drain from my face just in time to see my 11 year old’s team WIN the fucking championship game. The one that their baby brother should have been watching from team bench. This is not the reality of just my family, but it is also the reality of so many others. Childhood cancer is not going to go away and until it starts to get the awareness it so desperately needs, it is not going to change or improve. Your official response is a shining example of the major problem facing kids fighting cancer. People think that when they give money to a huge corporate cancer charity, they are helping the very kids they see on those coin jars and posters. Unfortunately, the truth is much different. Please see the following article penned by Jonathan Agin in the Huffington Post last year. The American Cancer Society that you partnered with, pretty much does NOTHING for our children except use their shiny bald heads as a ploy to receive donations. I guarantee you when you mentioned that you had partnered with the American Cancer Society, all the parents in the world of childhood cancer felt like they had just been slapped across the face, including myself.

http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

I am going to wrap this up here because if I do not, this will turn into novel that I do not want to write. Just know that I have watched my son and his fight, inspire millions of the most amazing human beings on the planet. I have seen kids, teenagers, tweens, young adults, grown adults, grandparents from not only the United States, but all over the world come together to move these mountains. All because of Ronan his little friends that you have chosen to ignore, in 2014 at least. Maybe in 2015, you will change your minds and light up the Empire State Building gold like so many of us have requested. If not, I am not worried as it seems so many others are stepping up to the plate due to the harsh stance you have taken. ( I FREAKING LOVE YOU TIMES SQUARE!!!) I think you may have underestimated the advocates of childhood cancer community just a tad bit. We are not the bully’s you made us out to be. We are simply just people trying to change a very dark world and give it the little bit of golden light to help it grow and change. We are simply trying to give these kids, OUR kids a future and a chance so they can grow up to do the amazing things that I know my son would have done. It really is as simple as thinking, “What if this were my child?” If it were your child, you would want the best awareness, funding, and treatments possible so you would not have to kiss their urn every night instead of tucking them into bed.

Speaking of bed, I have to go to mine as it is now early in the morning. Goodnight, Empire State Building.  You would look so good in the color Gold.

Goodnight, Ronan. I miss you. I love you. I hope you are safe.

xxoo

P.S. Please excuse any typos as I have not had much sleep due to obsessing about this little world I am trying to fix.  Even though my son may be dead, that doesn’t mean I’m not going to fight just as hard for him as I would for my other kids who I actually get to tuck in and kiss goodnight. I also just miss my son so very much.

P.P.S  We are having our 3rd Annual Gold Party September 27th at the W Hotel in Scottsdale, Arizona. Do you want to come and just make a big fat donation instead? All the money we raise does not go to anyone on our board as none of us take paychecks and we don’t have any employees. Instead, it goes towards helping fund the clinical trials these kids so desperately need. It’s a really fun party and I won’t even throw you in the pool at the end.  Well, unless you want me to… you should have seen last year.

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I've been saving this picture for a rainy day and it poured in Arizona, today. This is the reality of the world you chose to ignore.
I’ve been saving this picture for a rainy day and it poured in Arizona, today. This is the reality of the world you chose to ignore.

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

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

I kind of think I might do this one day.

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

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

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

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

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

http://buy.desertrunnersmovie.com

I have something new to share…

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

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

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

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

 

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

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

The treadmill made me do it.

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

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

Is this how Ronan felt, right before he died? 

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

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

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

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

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

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

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

Typewriter Series #690 by Tyler Knott Gregson

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

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

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

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

-Tyler Knott Gregson-

 

 

 

Read. Listen. And never say these words to someone who has lost a child. I’ve heard them all way too many times.

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http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/

What birthday?? Let’s run a marathon instead, fucker.

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Ronan.  Today didn’t start out extra hard, but that is how it has ended up.  So much has been going on.  Too much, I suppose.  I made it through my birthday as best I could.  It it any surprise that I didn’t feel like celebrating?  I just wanted the day and night to be over as quickly and painlessly as possible.  I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today.  He’s begged me over and over to please let him buy me some pretty earrings.  He knows if he goes out does it himself, I’ll just return them.  Pretty earrings won’t bring you back and that is still all I want.  NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY.  I still beg for him every single day.  So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear.  That because Poppy is here, she magically makes all my pain and sadness something of the past.  She doesn’t.  Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before.  I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making.  I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there.  I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.

After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running.  I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life.  I talked our Bri Bri into doing it with me as well.  She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2.  We got up that morning in preparation for the day.  I made us a little food, and we whispered in the dark about how excited we were to run this thing.  I took out a Sharpie and did my usual writing of your name everywhere I could.  I told Bri I was going to do her arms and she could do mine for a little extra running motivation.  I wrote, “Ronan” down one arm and of course “F U CANCER” down the other.  I handed her the Sharpie and told her to do my arms next.  I looked down at my arms after she was done.

RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.

“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.

“I know!” she said.  “I thought that’s what you wrote on my arm!”

“No! I wrote F U CANCER!”

We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves.  There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived.  I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day.  Besides, cancer is the biggest fucker anyway.

We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained.  I had a sweatshirt on but told her the fucker story anyway to stop her from crying.  It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over.  Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon.  So did the spectators on the street.  The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts.  I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you.  I was doing pretty well in the marathon until about mile 17 and that was pretty much it.  I hit that invisible wall that you hear people in the marathon world, talk about.  I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have.  I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line.  Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands.  I’ve never been more proud of my sissy in my life.  She is such a little badass in training and I am so honored to be showing her the ropes.

I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves.  It wasn’t just Ronan I thought about while doing this, but you all as well.  You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house.  I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die.  You remind me to get back up and fight harder than I ever have before.  So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.

Oh, back to today and how it was a really, really, really fucking hard day.  So hard, that I am too tired to write about it now, Ro baby.  It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much.  I have to get back to this book writing now.  I’ll try to check in with you in a few days.

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

xoxo