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.

Love our Lovies! Thank you for all you do for The Ronan Thompson Foundation!

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http://theronanthompsonfoundation.com/lovies

Late night rants and I can’t put Poppy down.

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Ronan. Fucking, fuck, fuck, fuck. I’m venting on here tonight and I don’t even care. I have been spending all of my nights, writing about this nightmare for this book and going back to re read my blog, which I’ve NEVER done, to reference some things.

This is beyond torture. I knew this was going to be hard, but SHITBALLS! This is beyond sick. I would give anything to be tucking you into bed instead.

So, the little time at night that I sleep, I have been having horrific nightmares. Last night, Poppy had cancer and went from being my healthy, chubby baby girl, to wilting away in my arms as I watched her die. Are you FUCKING KIDDING ME?! Can’t I catch a break around here?! I mean, I wake up to a nightmare everyday, which is not having you here, and I can’t even go to sleep without being tortured as well. Where are my puppies, unicorns and rainbows when I need them? Oh, I remember. I stopped subscribing to those a long time ago. Lucky me. Whatever. It is impossible for me to have gone through something like this and just stick my head in the sand and pretend like nothing happened. I’m so sick of hearing from the idiots of the world that now that I have Poppy, I should just move on and leave all of this behind. Well, nobody has ever told this to my face, but as always, I hear the whispers and they are whispers of BULLSHIT from sad souls who are obviously so self absorbed that they think that going through something like this, then having a baby makes everything disappear. That is so very untrue and so very ignorant.

Leave all of this behind?! Are you kidding me? Never. I will never sell my soul to the devil that way. I will never sell out and “move on” from Ronan. Yesterday, I woke up to 7 kids dying of cancer. 7!!!!  And that is only in the United States! Where are the riots on the street for that?!? Unbelievable.

I am not going anywhere, ever. I will stay here and continue to fight for you, Ronan and for all of these other kids until the day I die. I am not going “back” to my life of happy. I am a tortured soul and I can live with that. If anybody that is close to me has a problem with that, then please feel free to exit. The whispers are getting beyond fucking annoying.

Ronan. I started that rant a while ago. I think I was in the middle of being consumed by my writing at night and obviously I needed a break. My break came at the perfect timing as my childhood best friend, invited us down to stay with her over the weekend in Hood River, Oregon. It’s taken me a while to be able to say yes to something like this. I know Amy has been wanting to see me for a while now, but it’s honestly taken me this long to get back to that place where I feel I can see people again. Coming to your Nana and Papa’s is wonderful in so many ways, but I do tend to turn into a little of a hermit here. Meaning I don’t go out and do a lot of things. I prefer to stay home and only venture out for little adventures, here and there. Thankfully, they have enough acres and space to make us feel like we are in a different world, off doing a million adventures, without having to leave or drive anywhere to do so. When Amy asked to see us, I hesitated a little bit but ended up telling her we would come to her. We needed a change of scenery and I very much needed a break from my writing. Plus, I really have missed my dear friend.

We headed out on Friday for a weekend full of all thing amazing and beautiful that the Pacific Northwest has to offer this time of year. Mountain biking up some wicked trails, running through sprinklers, blueberry picking, ice cream, watching the boys play and splash on the beach, an amazing hike, all in a 48 hour period. Your brothers had such fun with her boys that they didn’t want to leave. I handled the weekend pretty well and tried not to let the wind get knocked out of me every time Amy’s very spicy 3-year-old, did something naughty. Oh, how he reminded me of you. He even has that same color of copper hair. Seeing your brothers with him and watching them giggle whenever he did something he was not supposed to do, broke my heart over and over again. But I survived the weekend much like the way I survive this life, by being surrounded by really amazing people and letting myself get lost in the smiles from your brothers and cuddles from your sister.

At one point Amy said to me, “You know you can put Poppy down, right?” Apparently I had been walking around pretty much the entire weekend, without setting her down except for when I had to change her diaper, but I hadn’t noticed this. I just looked at Amy and said, “Put her down? I never put her down. I can’t.” Errrrrr… I might be turning into an obsessive psycho maniac over your sister, but we all know there is a good reason behind this. Besides the fact that she is just too adorable to ever stop staring at.

Our weekend was wonderful and I’m back to the grind of trying to juggle 50 things at once. Yesterday, I felt so beat down that I almost cracked. It’s times like these that your Nana can sense it all and looks at me and says, “Give me Poppy and go for a run to blow off some steam.” That’s precisely what I did. It’s going to be hard to leave this place to go back to the realities of Arizona. It is still really hard for me to be there, but I will stick it out until something comes along to take us elsewhere. A change is in the air I think but I’m just not sure what that looks like as of now.

I have some other not so fun things to vent about, but I’m not going to do that now as I have to get back to the hours I need to put in with your book. All will come in due time. I also have some really amazing things to share as well as the sad/beautiful seem to live hand in hand.

I miss you so much, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Nothing like some hometown love to kick cancer’s ass

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Ronan. I don’t remember the last time I’ve written to you and I don’t like that. My days are so consumed with trying to be the best mama to your brothers and sister. This means no computer time, only a little time is spent posting the never ending cute little Poppy pics on Instagram as my way of trying to keep up with all of your lovies out there. They seem to be growing by the day and that makes me so proud. My nights have been spent writing and working on this book. My nights have been spent writing accompanied by hot flashes and puking over the toilet again due to living this fucked up “journey” over in my head again and writing it all out to tell our little story. Don’t get me wrong, I am grateful for the opportunity, but it’s still very difficult. I got through your diagnoses and I had no idea writing about that again would leave my head spinning in the way that it did. I can’t imagine what writing about your death will be like for me. This is the part where all you lovelies chime in on how brave I am. I don’t feel brave. I just feel like a mama who will do whatever it takes to continue fighting on for her child. Wouldn’t every mama walk to the end of the earth to make sure their child’s legacy lives on? To make sure good things continue to go on, because of their baby? I would like to think so. This is also just me, grabbing on to anything and everything I can, to still get to be your mama and parent you, Ronan. I don’t get to teach you all the things I dreamed of. I don’t get to scold you when you are being naughty… The only way I can get to you, is through these things that I am so desperately trying to do. Sometimes I feel like I’m grasping at thin air, sometimes I get tired and so very sad, but I have never in my life wanted to give up or quit. No matter how frustrated or sad I get because I know at the end of the day, you’re not coming back. And that is all I want more than anything in the world. But all the gratitude and good things will keep me going… I promise you that.

Today is an amazing example of good things that will keep me going. My little hometown showed some major RoLove today. I got asked to lead a 5k run that some girls I know wanted to throw together at our Lake Sacajawea. Of course I said yes and that is pretty much all I did. Everyone else buzzed about, working their butts off to make this “Run Like A Rockstar” 5k run, happened and it ran smoothly. All I did was try to get in a few runs before the big event so I could actually try to make it around the lake without having to be pushed in a wheel barrel. We had such an amazing turn out and I felt like I was floating in a sea of purple the entire day. I ran the lake as fast as I could with an injured knee from my previous running that I have been doing. I ended up walking a bit too but I was fine with that. One of my oldest friends, Laura was sweet enough to stay back with me so I didn’t have to walk alone. She talked about how she was so excited to run this but then pulling up to park and seeing your little face on the poster was just awful. How this was such an awful reason to have to run. I told her I knew. How surreal this all still seems to me. I know I used the word unfair through my tears. How could my baby be just fucking dead? How could my totally healthy, beautiful baby boy be so healthy, and then have fucking stage 4 cancer just like that? Through her tears she told me she was sorry, but how proud she was of all the things we are doing. I am proud, too Ronan. I know we are and will change this world in a very big way but FUCK. What I wouldn’t give to have just one more second with you. What I wouldn’t give to have my old life back. I can’t though. I know this but sometimes I like to close my eyes and just pretend.

I finished the lake and my knee actually felt o.k. My time sucked but today, I had nothing to prove at all. I was just happy to finish without injuring myself even more. You know who kicked ass in the race today, Ronan? Your brothers. I had no idea that I had little runners in our family! Liam has been going on some runs with me at night, but I had no idea he could run 3.6 miles in 30 minutes. Holy smokes I was blown away! Quinn came in just a few minutes after him. Liam ran pretty much the whole lake, by himself. This totally brings tears to my eyes because I know he did this for you, and how proud you are of him. I am so proud of them both not only today, but always. Such amazing little boys they are.

After the race I got a chance to meet some really lovely people who all love you so much. It was an emotional day but so rewarding as well. I am so grateful to everyone who came to support your foundation. Thank you to all of my rad hometown babes who worked so hard to get this all done. I know you are doing these things for the RIGHT reasons and nothing more than that. That is so important to me. Thank you for never forgetting my little guy who continues to inspire you daily. Thank you for keeping his mama going by showing me how much the power of love can move mountains. I am so proud to call you all my friends and I will never forget what you did for us not only today, but always. This is just the beginning. I cannot wait for next year and I am so proud to call this place, home.

Alright little man. I need to get in some hours working on this book. I talked to your Sparkly the other day. I miss him when we are away so much. He knows that I’ve been staying up late, working on this book and I listened to him as he said with urgency in his voice, that I need to get this done so I can “Fuck Cancer.” I know what the urgency meant. It meant that kids are dying, dying, dying and nobody is paying attention. I know he feels the same way that I do, that this book is not only our beautiful, tragic love story, but it is another way to spread awareness as well. I am doing the best I can, working as fast as I can, but I also know this cannot be rushed. All I can do is my best and I want to do this the right way, not the rushed way. I am just proud that I actually started it and I am making progress.

Alright little man. Back to the book. I miss you. I love you. I hope you are safe. G’nite, babydoll.

xoxo

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All good things are wild and free. Especially in Washington.

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Ronan. We went on our first kind of real vacation without you, since you died. A real vacation meaning a vacation that we had talked about going on while you were alive, but never did so. A vacation that I grew up going on during my summer breaks from school. The one that I always dreamed of taking my 3 boys on, when they were old enough. We always put it off because “Ronan is too young and I’m scared that he won’t listen to me and will die by jumping off the side of the yacht. We can take him when he’s 4 or 5, but not now.” Not now sucks balls and I should have, would have could have because guess what?!  I got to have you die not from having the time of your life by jumping off the side of our boat but from cancer instead. Lucky me, lucky you. This will always be one of my biggest regrets in life, the not taking you on this trip because you were too wild and crazy. We would have had the best wild and crazy time together, Ronan and I will always be sorry about this.

 
So, to the San Juan Islands in Washington we went. With your Nana, Papa Jim, my step-sister, her husband, their daughter, your daddy, brothers and Poppy girl. Your Papa Jim has been so excited for this vacation and has been talking about taking you all on it for years. It was definitely one of his dreams to do so during his life. Before he gets too old and can no longer navigate and drive the boat. We just spent the most beautiful week all together in the open seas, going from harbor to harbor. We made our way all around the islands and even up to Canada. The weather cooperated perfectly for me as most of the days were cool and a little dark and rainy. It was almost the perfect vacation. You were the only thing missing from the perfection of it all. Your brothers had a blast doing all the nature/ocean things that we don’t really get to do living in Arizona. We caught our own crabs for dinners, played in the fresh, cool air, Quinn drove the little dingy about in the ocean and laughed as he went faster and faster with your Papa Jim right by his side. There were card games, stories galore, catching and releasing sea creatures, beautiful family time. It was a vacation that you would have went crazy for. I tried to handle it all as gracefully as I could and I didn’t even feel the urge to throw myself off of the boat and into the choppy ocean seas. Poppy was a dream and barely made a peep except when she decided to grace us all with her coos and smiles. This vacation meant so much to all of us, but most of all to your Papa Jim and I’m so glad we got to do this with him. There are not too many 70-year-old Papas that can drive a huge boat through the middle of the islands and not blink an eye. It is something I know your brothers will remember forever and that means so much to me. Our vacation is over but we will spent the rest of the summer at your Nana and Papa’s house while your daddy goes back and forth between here and Arizona. Our first real trip without you is over and I am sad, but only because it was a trip that we never got to take you on. That just goes to show, you should never put things off because you never know how short one’s life really will be. . I’ll never be able to take you on a trip that you should have went on and the only reason I got through that trip was because of your sister. Because every time I got sad I just looked down at her and told myself that a part of you was there, with us. I didn’t really let your Poppy sister out of my sight and there is a good reason behind all of that. I don’t think I could have done that trip, without her much like I don’t think I would be able to do this life if it weren’t for her. She has brought back little pieces of you everywhere.
 
Tomorrow, Macy is flying in to spend some time with us while your Daddy leaves. Everyone, including your Nana and Papa are excited about that. My friend, Robyn, Ezra’s mom, is coming down to stay for a day as well as she is visiting her family up in the Seattle area. I’m so lucky to have the kind of parent’s who are so happy to welcome all of my friends into their lives and their house, like they are part of our family. They never act inconvenienced or put out and they always welcome my friends with open arms. I am so lucky in that regard. I know I will do the same for my boys and your sister when the time comes. I am so lucky to have the friends that I do. Especially that Macy of yours that will drop everything at the drop of a hat to swoop in and come to Washington just because I ask her to. I’m sure your Poppy sister had a little something to do with that as Macy can’t take going too long without seeing her. It will be so wonderful to have her here.
 
Ronan. I started this a few nights ago. I’m sorry I haven’t written. Macy is here and has been for a few days. It is because of this that I know for the time being, I will be o.k. She makes everything better. Tomorrow, we are meeting Paxton’s mama who flew in to spent the year anniversary of her baby boys death with me. I know I don’t know her, but I am going to try my hardest to help her through tomorrow. She took a chance on me and I am going to do my best even though most of the time, I have not a clue as to what I am doing. All I know is you would want me to help her. Isn’t that what I am left her for? To help others when I can? I’m sick about tomorrow and for what’s to come. I spoke to her tonight and told her I don’t know how, but we will get her through tomorrow. Please help us with this little man. Let Paxton’s mommy feel him all around us. We’ll need it so much to get her through the hell of a day that it’s going to be. I love you, Ronan.
 
I miss you. I love you. I hope you are safe.
 
xoxo
 
P.S. Fuck you cancer. You are still the biggest asshole I know. I am so sad and mad and heartbroken for tomorrow, the day that took Paxton away from his family. A sweet, innocent baby. Nobody can ever justify or make sense of ANY OF THIS. Ever.

1st Annual Run Like A Rockstar!

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Come join me in a 5k in my hometown! So excited to do this, so thankful for the support! Details for the race are in the link below! Let’s run for Ro!

http://www.active.com/running/longview-wa/the-ronan-thompson-foundation-5k-run-walk-2013

A live version of your song for tonight, Ro.

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I spy some cuties in the audience!

 

http://www.youtube.com/watch?feature=player_embedded&v=3dgXkumKEQE#!

This book on the brain…

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Just wanted to check in. I’ve been writing, just not on this blog. I’ll update soon but between foundation things, Poppy things, the twins being home for summer, traveling, and working on this book, things have been a little crazy.

I miss you all. Missing my Ro most of all, always. I’m working hard to make my little man proud. Here are some new pics of Poppy. She is still the sweetest little thing and we are enjoying her so much. Hope you all are having a great summer! Love you much!

xx

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Turns out Maybelline Great Lash Mascara isn’t so great when you’re a bloody mess

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Ronan. Finally, I can sit down and have some time with you. I hate that I haven’t been able to write, let alone breathe lately. I’ve been so unbelievably busy that I swear by the time my head hits the pillow at night, I am out like a light. Such a change from how things used to be. I miss my insomnia nights where I used to stay up and write to you. Poppy has been keeping me incredibly busy. I forgot how time-consuming this whole breast-feeding thing is and your little sister has such an appetite that I swear I am feeding her around the clock. I know it’s what’s best for her and I love spending the time with her doing it, but it does leave little time to get things done around here. I’m just trying to soak it all in still because I know how quickly this time passes. Things are still going amazing with that little sister of yours. She is still a happy girl and is sleeping at night like a champ. None of us can get enough of her. I won’t let her out of my sight and she goes everywhere with me. She even went to her first board meeting the other night and didn’t make a peep as everyone passed her around to love on her. The amount of love for this baby girl blows me away. It’s like she’s getting double the dose from everyone due to the impact you’ve had on all of us, Ronan. She is so lucky to be surrounded by the most amazing souls. I can only imagine what an amazing little human being this will make her. Tomorrow, she will already be 2 months. It has flown by so fast and she is changing so much. She’s now doing really cute things like smiling and cooing at us all. Macy swears she can understand everything we are saying and she trying to have a conversation back with us. The way her eyes look at all of us while we are talking to her makes me think she is right. This Poppy girl already seems to know so much.

Your brothers are out of school. Normally, we would be in San Diego by now but this year we decided to take a little break. Your daddy was burnt out on it and I don’t blame him. One more year of going to the same spot where we always took you, without you was going to be too much for me to handle. I almost had a nervous breakdown last year. Too many almost 4-year-old blond-haired boys running about. Too many swimming pools without you in it. Too much of everything I pretty much never care to see again. It wasn’t therapeutic and it wasn’t healthy for me to be there last year and I have no interest in returning back to a place that I so desperately want to be the same, but it never will be the same again. So we are still in AZ. Your brothers have started a basketball camp which they love but it’s only for a couple of hours a day. The rest of our days have mostly been spent just hanging out having play dates, swimming, and they have helped me with a lot of things around here. We have our little, Rachel, in from NYC. I love having her here so much. We all do. Just another one of those amazing things to come from this blog and from you. She is our family and I love seeing her with your Poppy sister. Now, if I could only get her to move in and be our nanny;) Something tells me that would not be enough to keep our little smarty pants I just graduated NYC and now am working at Columbia University entertained. I am so proud of her and all she is doing. Macy calls her Saint Rachel because she is that amazing at 22. I feel so blessed to have come across this soul who is now a part of our family. We are all going to miss her so much when she leaves. Hopefully she will come out to Washington and visit us when we are there this summer.

That is what we are doing this summer. I am taking your brothers and sister to Nana and Papa’s house. It’s all your brothers have been talking about for months. I’ve been having to listening to them begging to go out earlier, but we had some things to take care of around here first. Believe me, I am just as excited as they are. I miss my parents and my childhood house where I always feel so safe and sound at, even under the shittiest of circumstances. It will be nice to have help with your sister and brothers. Washington is my place of peacefulness where I feel like I can actually breathe for a little bit. And no almost 4 year old blond boys exist. It will be nice to take a little break from the rat race that I often get caught up in here. I have lots of plans that mostly consist of no plans at all, besides spending a ton of time with your brothers and Papa Jim doing our favorite things like fishing, hiking, playing hide and seek until dark, and enjoying all the beauty the pacific northwest has to offer this time of year, including hopefully many days of rain. Please, please, please Washington rain gods, work your magic. I have been missing our rain so much, Ro.

We had a board meeting the other night. We have so many things in the works and so much coming up. A few top secret things that involve a kick ass rockstar. We still have not heard back on the petition to light the Whitehouse Gold for September. I’m not sure if that’s a good thing or a bad thing. I am still hoping for the best. After the board meeting, I told your daddy I would have Fernanda drive me home because I needed to spend some time with her. We had a lot to talk about and as always, it circled back around to you. I know you know how I am. I don’t let my guard down in front of many people. I much prefer to do all of my crying alone, and don’t often do I do it in front of others. There are only a handful of people who I am comfortable enough with to let everything out. I’ve never had a guard up with Fernanda which is why after our little pow wow, I could barely get my ass back into our house because I was seriously blinded by my tears and the fucking cheap ass mascara I wore that day. Remind me never to wear a different brand of mascara than I normally do. I came into the house, my eyes were black and stinging so badly from the mascara running in them, that I had your daddy in a complete panic. I ran to the bathroom to take out my contacts and wash my face while your daddy hovered over me begging me to tell him what was wrong. It’s the same thing it always is, Ronan. You are dead, I would give anything to have you back, I sometimes still don’t want to be here, because I just want to be with you, where are you? who is taking care of you? and why can’t it be me? Everything in my body still yearns for you, screams for you, begs for you in the worst way. Sometimes your daddy and I sit and bed at night and whisper secrets.

“Do you ever think Poppy has parts of Ronan?” he asked me the other night.
I quietly said, “Yes.”

“Me, too.” he said. “Is that wrong?”

I just told him through my tears, “If it gets us through this, does it really matter?”

I don’t think that it does, Ronan. She is parts of you without a doubt. Just like Liam and Quinn are, too. Many days I catch glimpses of you through your brothers and it helps me in a way. I see you in Quinn’s still sometimes with his mischievous ways. I see you in Liam’s strength and the way he carries himself so proud, like you always did. Poppy feels like you. She reminds me of you. I know you sent her to me to give me a little piece of you back. And some days I think you sent her to me to give me a lot of you back. I don’t care how whack-a-doodle that sounds. Thinking that way helps me to survive this insanely painful life without you here. I can’t tell your baby pictures apart. I can’t get over that she has the same little secret dimple that you had only when you smiled in the same exact spot. It gives me goosebumps and butterflies at the same time. I like living in this Poppyland. It feels o.k. again. Some days it even feels good.

Alright little man. I miss you so much. I miss you. I love you. I hope you are safe. Sweet dreams baby doll. G’nite.

xoxo

P.S. Please keep our Kassie safe while she is away on her amazing African adventure. I know she took you with her. Thanks, baby.

P.P.S. Does anybody know anybody high up at our local cable company Cox Communications?? Woody went to tour one of our Ronanld McDonald Houses here today because we are looking to help them with some of their wish list items. We would like to make some things better for the families that have to stay there. Turns out, they don’t have the place wired for cable because Cox wants to charge them full price and won’t give them a discount. Seriously? That makes me so mad. I love it when people try to make money off of people who are going through a hard time. It’s a freaking non-profit, Cox Communications. Give me a break. I might like to write them a little letter or speak to somebody who is higher up over there. Thanks, lovies for anything you can do.

xx

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The days of hell are over, but never really end.

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Ronan. Your 6th birthday came and went. I kept wondering to myself, what kind of party we would have had? I asked your brothers, “Do you think Ronan would still like Star Wars if he were here?” They assured me that you would have so in my mind, for the 2nd year in a row, I threw you a Star Wars party. I clung to my imaginary party in my mind to get me through the birthday from hell that I had to have without you in real life that fell on Mother’s Day this year. Your brothers and daddy did their best at spoiling me so by telling me how much they loved me, what a great mom I am, how lucky they are to have me, etc… They tried to make the day about me as much as they could but I ended up saying, “This day isn’t about me, it’s Ronan’s day so let’s do everything Ronan would have wanted to do.” So we did. We went to a brunch where I ignored all the 6 year olds running about and focused only on your brothers and Poppy. We went swimming and I watched as your daddy and brothers went crazy going on the water slide that was at our hotel. I sat quietly in the shade and let my smiles, come from them. They played football in the grass and participated in a water balloon fight. After a few hours of that we went back to the room to rest and get ready for dinner. We ate at a really good mexican restaurant and we had plans to go and see Iron Man 3 (which you would have totally wanted to do) but your sister’s breastfeeding got in the way of our making the movie on time so we ended up just coming back to our room. We all snuggled up together and watched a movie from the hotel instead. Your brothers let me pick it which was very sweet of them to do so we ended the night by watching “Oz, the Great and Powerful.” Quinn gave it 5 stars. Liam gave it 4. I was just happy they both enjoyed it and it made a quiet ending to a day that I just wanted to get through without jumping off the side of a cliff.

Now I sit here on the 15th of May, reflecting on what this day was like 2 years ago. It was the day we had your funeral or a.k.a. your celebration of life which is really just a nice way of saying this is fucking bullshit that I had to cremate my kid so let’s try to cover it up by calling it something beautiful. Having my baby cremated is not the way I ever envisioned celebrating your life. Today, I pulled out the white dress I wore on your death day. The white dress that hung on my shell of a body and now hangs in my closet like a keepsake or a wedding dress because I know I will never wear it again. It haunts me hanging there and I often find myself running my hands over it, waiting for the ghost of who I was during that time, to appear. That shell-shocked of a girl who really had no idea of the magnitude of what had just happened because I was in such shock and a deep place of denial. I remember your services, barely. I remember how I was so numb, that I didn’t even cry. I remember making everyone wear white and how after everything was over how Liam went over to a fountain to throw a penny into it. I remember saying, “Make a wish!” and how he looked up at me and said, “Why? Wishes don’t come true.” I remember at that point, it took everything I had to not fall over from the pain of his words. His innocent yet not so innocent words that right then and there, shattered everything I had ever known. Wishes don’t come true, rocked my world in the most fucked up way possible. Wishes don’t come true out of the mouth of an almost 8-year-old that should not be so wise in the way that he is.

I spent a lot of today crying and staring at that white dress while I found the comfort I so desperately needed, in your Poppy sister. I can’t seem to put her down which explains the loads of clean laundry that I need put away. Laundry can wait. I’ll take the snuggles of your sister over clean laundry any day. Your brothers are getting ready for their big basketball game on Friday. So a lot of practicing has been going on over here. Tonight I left Poppy with your Daddy for a bit so I could sneak out for a run. A little 3 mile run that I nearly winced in pain with the entire time. I forgot how bad it sucks to try to get back into running after having a baby. OUCH. Everything hurt tonight but you know nothing can ever hurt as much as the pain I feel from being without you everyday. I ignored the pain from my body and pushed through my 3 miles, slowly, but I was determined not to give up or give in even though every part of my body was screaming at me to do so. I came home just in time to see your daddy through your bedroom window, sitting in on your bed in Poppy’s room. I watched as he stared down at Poppy with such a look of mixed emotions on his face as he played with her little feet. I felt like an outsider, looking in on two strangers. This can’t possibly be my house, my husband, my new baby sitting in my dead child’s room, right? A year ago I would have saw this sight and wanted to run away from it all. Seeing this sight would have been too much for me to handle. Tonight, I had no desire to run away at all and instead I walked inside our house to where your Daddy was walking Poppy all about, carrying her like a little football. I went up to her, let her focus on who I was and said, “Hi Poppy!” I watched as a big smile splashed across her face. “She smiled!” I exclaimed to your daddy. It was a smile that told me that we are all doing alright and that Poppy is the best thing that could have ever happened to us since losing you. I honestly don’t know what I would do without her. She is still the most peaceful little thing. No crying, no fussing, just lots of eating, sleeping, and love. We all cannot get enough of her.

I keep telling myself if I can just get through these tough, tough days, that I have so much to look forward to these coming months. Dr. Sholler is coming into town on Sunday, so I will get to spend a few days with her and pick her brain in regards to my master plan. We have made some plans for dinner and some hikes. I am so excited to have her here and she is so excited to meet your baby sister. I’ve got Macy coming in to stay with us for about 5 days and you know everyone in our house is so excited about that. Bri Bri is also coming out and so is our little, Rachel. It will be nice to see my favorite girls and spend some time with them. As Dr. JoRo says, “Did you ever know that so much sadness and so much happiness could coexist?” I never would have believed her if she had told me this a year ago, but now I find it to be so true.

Alright little man. I must go. Poppy wants the boob. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

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