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

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

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

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

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

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

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

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

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

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

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

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

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

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

That you control that completely.

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

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

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

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

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

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

That rain is beautiful.

And so are you.

 

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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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May, May go away. Do not come again another day.

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Ronan.  May is officially here and I’m trying my best not to go into freak out mode.  You know what is coming up and it never gets easier.  May 9th will be 3 years without you and May 12th will be your 7th birthday.  Not to mention Mother’s Day, the day we had your funeral, the day you were cremated, which also happens to be on your birthday.  It’s all these fucked up dates that I wish didn’t exist, but they do and there is no escaping them.  I will come up with some sort of plan to get through the days like I always do and luckily I know we will be with some of my most favorite people, so hopefully that will help ease the pain just a bit, but every part of me remembers the pain of these dates.

I don’t even know what has happened since the last time I have written.  My days are filled with all things Poppy and that is about it.  I have really taken a step back from everything in life because for the past year, I just really needed to get lost in her and that is exactly what I have been doing.  She deserved that, Ronan and frankly, so did I.  I needed to just take this time and soak up all of her innocence, sweetness, and truly get to know my baby girl.  Poppy doesn’t have a lovie or a blanket that she is attached to when she sleeps like you did because you know what she uses instead? Me. I have not put her in her crib once to sleep, not even for a nap.  I rock her, lay her down in bed with me and listen to her as she hums and plays with the necklace that sweet Mrs. Martin gave to me when Poppy was born. It’s just the letter, “P” and she falls asleep every day and every night by holding on to me and my necklace.  That is how attached we have become and I wouldn’t have it any other way.  I cannot imagine doing this life without you AND without her.  I don’t know what I would have done had we had not had another baby.  She brings about me a calmness that has been missing for so long.

It did happen the other day though.  The thing I knew was going to happen sooner or later; I am just surprised it happened while she is so young.  It was about a week after her first birthday and I was laying her down to change her on your bed.  We have that huge picture of you hanging over your bed and as I was putting a new diaper on her she looked over at your picture, pointed and goes “Ro Ro.”

I almost fell over.  I truly thought I was hearing things so I said, “What did you say?” She looked at me, pointed to the picture and goes, “Ro Ro. Brotha. Brotha Ro Ro Ro.” She motioned for me to pick her up and take her over to your picture so I did and she planted a big fat kiss on your little lips.  The tears started pouring down my cheeks and I had such a mixed reaction of total euphoria and wanting to run kicking and screaming out of our house.  It took me a few minutes to decide what it is that I was going to do.  Was I going to run away or just take a deep breath and embrace this moment of pure fucking amazingness that can only be explained as Poppy knows things that are not from this world?  She can’t even say Liam or Quinn’s name yet and the fact that she not only said your name, but knows who you are from a picture makes my heart go a million miles a minute.  As soon as Quinn and Liam got home, I grabbed Poppy and took them into your room.  I said, “Watch this.  Poppy, who is that on the picture?” as I pointed to you.  She goes, “Ro Ro.” Quinn started giggling uncontrollably and Liam didn’t quite know what to do.  “She just said, Ro Ro! Mom! Did you hear that?!” Quinn was jumping around with such excitement.

It’s been non-stop since that started a few weeks ago.  All day long all I hear, besides her barking like a dog is “Ro Ro Ro Ro. Brotha Ro Ro.” She is usually walking around carrying a picture of you, kisses it, and goes back to playing with something else.  She also studies the picture frame you are in like crazy, trying her best to open it.  It’s like she’s saying, “I know if I get this open, I can get him out and he can come and play with me.” I truly think that is what she thinks.  Oh, how I wish this were true.  I’m torn between loving all of this so much to sometimes it makes me sick.  As I said to your Sparkly the other day, “I’m going to break Poppy’s heart one day when I have to explain to her where Ronan is and what happened to him.  I don’t want to break her heart. How am I going to look my daughter in the eyes and have that conversation with her?” The thought of it makes me want to vomit all over the floor.  Why the fuck can’t her first heartbreak be over some asshole guy she will date when she is 16? Not over her beautiful brother that would have loved her so much, taken such good care of her and beat up the fuckwad who broke her heart? I like that story much better than the one I’m going to have to tell her.

I think I have to go now, Ro. Much more to say as always but my eyes are burning and bed is calling my name.  I’m forever sorry it is this way.  I miss you.  I love you.  I hope you are safe.

xoxo

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

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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.