Tag: Ronan

Dear Empire State Building, Part 2

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An Open Letter To Anyone Who Cares To Read It:

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

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

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

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

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

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

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

Stay Gold,

Kassie Rehorn

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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

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

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

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

I wish I didn’t know what it was like to only be able to kiss your face through the pictures on my iPhone. I miss you. I hate this.

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Ronan. Every year since you left when Mr. Sparkly Eyes’ birthday rolls around, I always give him a card that I’ve made for him through my iPhoto with a picture of you on it. A few nights ago I was at my office working on my book, but I needed to take a little time out so I started to go through my pictures of you to make his card. It’s never an easy thing for me to do, but I feel like it would be important to you, so I carefully pick out a picture that reminds me of how happy you were while you were here on this earth. I usually just write really some simple words and I always sign it from the both of us. Ring, ring went my phone as I was doing this little project and I saw the word “Lover” popped up on my screen which is really Macy. Of course I picked up because I always do when she calls. She started chatting away about something and as I listened, I buried my head in my hands. I went to answer the question she had asked me, but she knew from the tone in my voice that something was wrong.

“Oh babe. What’s going on?”

“Nothing. Everything. I’m sitting here trying to make Mr. Sparkly Eyes’ birthday card and is it weird that I’m putting another picture of my dead kid on it like I do every year for him? I’m going through these pictures and I cannot believe he’s not here with me to give him this birthday card himself.” Insert more sobbing here.

I listened as Macy told me that it was not weird at all and we continued to chat for another half an hour or so until I stopped crying. She ended up making me laugh after she listened to my blabbing away and crying while she did her best to talk me through what it was that I was feeling at that moment. I didn’t finish the card that night, but ended up finishing it a few days ago instead. I have learned when something just isn’t feeling right, not to force it and I knew if I forced your card, it was going to be crap. I take my card making very seriously, especially when you are involved. I got the card in the mail the other day and of course, it is perfection and I know it will make him smile as I tell him the story behind that little picture of you and your happy face.

Things here are still really busy and there is not a lot of down time between Poppy and your brothers. I am trying my best to keep my head above water and have been making sure I get some form of exercise in almost everyday. Mostly it’s been consisting of hiking up Camelback Mountain a.k.a my church as they just opened back up the hard side (Echo Canyon) again. I have so much anger inside of me still and it seems the best place to take it out on is the mountain, otherwise I will just internalize it all and end up exploding one day. Sometimes I hike by myself, but I have also been going with Tricia again which has been really great. You know, going through what we went through with you was really hard on our friendship. I made some mistakes, had a lot of expectations, felt let down and at times, was really judgmental about some situations that I had no right to be judgmental about. I never meant to hurt her as everything I said was always just coming from a place of love, but I also know that place of love was a little harsh. She being your Godmother, had a really hard time with all of this and somehow we ended up getting off track a bit. Slowly we’ve started to fix some things and the beauty of this is we know that our friendship is always going to be here; even when it’s been a little quiet at times. We’ve had some really harsh talks, some really good talks, and we’ve both apologized as we know our friendship is worth saving. She is family and at the end of the day I know where her heart is and it has always been with you and it will always remain there. I didn’t go to her wedding which you know I am sad about, but it wasn’t for any reason other than it was in Mexico and I wasn’t willing to take Poppy with me and leaving her behind was not an option, either. I did give her something blue to tuck into her bouquet though which was a tiny piece of your blanket. It was hard for me to take the scissors and actually cut off a piece, but I needed something of you and us to be there with her. I wish it could have been the two of us there together and knowing the should have been’s of her special day will forever haunt me and make me sad; but the look of happiness on her face from the pictures I saw do take away some of that sting.

So, Poppy’s first birthday is right around the corner. April 8th to be exact. I don’t know how your baby sister is almost a year already as the time went by so fast. I’ve been trying to figure out what to do for her birthday, but the fact of the matter is I’m feeling overwhelmed about it. Do we just do something quiet at home or have a full on party? I keep going back to what would Poppy want us to do? In Poppy’s perfect world, I’ll bet she would want to just have a day with just a few people and about 100 dogs. She is dog OBSESSED! I told your daddy I’m starting a campaign called, “Poppy needs a puppy,” but he’s just not having it. Anytime she sees a dog, she starts barking and gets so excited that her little body just shakes and she usually ends up waving her arms so fast that she falls over. All day long she goes around our house, walking on her hands and feet, in a dog position and sticking out her tongue and panting like a dog. We don’t even own a dog so the fact that she is doing this from the memory of the dogs that she has seen, makes it even funnier. She is such a little character and loves to entertain us all of the time with her constant babbling, dancing to her favorite song which is “Get Lucky” by Daft Punk or any type of rap music. Shorty’s got game and seems to be developing quite the spicy little personality. I’ll get her birthday figured out soon, but something tells me it’s going to end up being very low key and sweet.

I’ve got to run little man. I’ll write more soon, but I have to get back to this book business. I miss you. I love you. I hope you are safe.

xoxo

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

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

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

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

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

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

“No! I wrote F U CANCER!”

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

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

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

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

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

xoxo

Your song for the night. Sorry it’s been so long since I’ve done one, Ro baby.

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Obsessed with this song.  It may make me bawl like a baby, but it is so beautiful. Plus, Poppy loves it.

http://www.youtube.com/watch?v=-2U0Ivkn2Ds

A Very Merry Christmas???

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Ronan.  It’s nights like last night when I really wonder if you can see us.  You know how much I struggle with the whole heaven, white fluffy clouds thing and where exactly you are.  Late at night when I’m writing, I often have your urn sitting in front of me and sometimes I take a picture of it and through my writing tears, send some random message to your Mr. Sparkly Eyes about how wrong this is, how much I miss you, etc… This always leads to the next time I see him, him bringing up the picture as looks at me so intensely and says, “I promise you, those ashes are just ashes, he is always with you, always surrounding you.  I know he never leaves your side.” He says it in such a way that I without a doubt, believe him and truly do think that I am never without you; spiritually that is.  Still, it doesn’t make my pain any less.  So, on nights like last night, if you truly are around me I think to myself, This must be so hard for you to see. We were just having a normal, family night in our kitchen and your daddy and Quinn had just returned from playing basketball at The Village. Poppy was sound asleep and we were chatting away.  Liam came walking into the kitchen, visibly upset.  I asked him what was wrong.  He just stood there, fighting back his tears, trying to be so brave and strong but he couldn’t continue to hold anymore of his emotions in.  Your daddy grabbed him as he choked out the words, “I miss Ronan.”  This led me to stop what I was doing, which was busily cleaning up the kitchen as I watched your daddy hold Liam as he buried his head into his chest.  I surveyed the room and we all looked so… helpless.  Quinn was sitting at the kitchen table, and he kept looking down as if he didn’t know what to do.  Your daddy was holding in all the screams and cries that I knew he wanted so badly to let out.  Liam was sobbing.  I grabbed something and threw it as hard as I fucking could at the wall.  I then went over and grabbed Quinn and held him. I told Liam that he needed to get his feelings out, how that it is all too much to keep in.  I asked him to elaborate on the “I miss Ronan.” He told us how he misses playing with you and just wants to see you again. I could say nothing except for I was so sorry and I would give anything to bring you back. We talked about the importance of sharing our pain and our feelings.  Your daddy told Liam how sometimes he parks his car before going into a court appearance and just screams at the top of his lungs.  I told your brothers how I pretty much cry everyday still and that it’s o.k. to still be so sad that you got sick and cancer stole you away.  Your daddy reassured your brothers that we as a family are safe and will always be together. I took Liam and we went and snuggled on top of his bunk bed where he cried some more.  It was a rough night for everyone and Liam asked to see Dr. Rachel again so I made him an appointment.  I am so proud of him for knowing when to ask to see her and not being ashamed or afraid of it.  I started this post a while back, Ro.  We are doing alright and some really wonderful things have been happening, all because of you of course.

I really don’t even know what to say about all the beautiful things that keep happening except for I continue to be blown away by people’s beautiful hearts and the way they just want to do good things in the world, while expecting nothing in return.  Last week was one of those really, really amazing days.  The kind of amazing day that after it is all over, I can do nothing but bury myself in my bed and sob like a grieving mother who just lost her child, all over again.  It all started with a normal, “let’s collect toys for Ronan’s Candy Cart to take to the kids at PCH on the oncology floor.”  And you all were amazing to donate so many awesome things.  My friends, Katie and E, started collecting toys as well at their stores.  I was all set to go to PCH on Wednesday, but then my friend sent me a little text message. Her text said that her friend, Adrian Wilson, who is an NFL player, wanted to help with the candy/toy cart and was wondering if he could go to PCH with us on Thursday to deliver some things. I was of course over the moon about this so I sent an email over to PCH to ask if the day could be changed to accommodate Adrian’s schedule.  They were more than happy to do so for us.

I met E at Toys-R-Us this morning and a shopping we went.  I let E tackle the girl things as she has 3 of them and I took on the boy things as I don’t know a lot about the girl world of toys, just quite yet. Poppy is slowly teaching me but as of now, she is most interested in my car keys and anything else she an chew on like the teething little babe that she is. We loaded up cart after cart after cart… about 20 of them, packed full of the most amazing toys possible.  I made sure to grab a ton of Star Wars stuff and just about fell over when I found the Clone Trooper that stood about 3 feet tall.  Hot tears splashed down my cheeks as I grabbed him and told Poppy to move over for her new friend.  Ronan would have loved him was all I could think in my head.  As it came time to checkout, I helped to bag up the toys while E stood over the cash register with the biggest smile on her face.  I swear I saw freaking rainbows, fairies, and mother fucking unicorns flying over her head as it was that magical of a moment.  Adrian had offered to pay for EVERYTHING.  I was doing such a great job at keeping my shit together but then some random lady stopped me and said, “Are you the one doing this amazing thing for the hospital?” I told her I wasn’t, that it was NFL player Adrian Wilson and I was just lucky enough to be a part of his generosity. Well, I almost got all of those words out before the tears started splashing all over the Toys-R-Us floor.  There was no keeping my composure over this act of kindness at all- it was just too bittersweet and beautiful.  On my way to PCH, I called your Nana, sobbing.  I told her what I was doing, who it was that was this amazing thing and how sad I was that you were not here to see any of it or be a part of it.  We talked for a few minutes before I hung up and officially had to pull it together before stepping foot on the hospital floor.  We loaded all the toys into wagons, went and met Adrian at the front of the hospital and off we went to the 7th floor of PCH.  We were there for about 2 hours and everyone was so excited to see us and even more excited that Adrian had taken the time to come and do such a kind thing.  We got to go into most of the rooms and Adrian was so sweet and kind, offering pictures and autographs to all the kids and even their parents.  There were a lot of older kids on the floor who were sweet about all the dolls and toys that we brought, but were not really that in toys as many of them were older teens.  Adrian took care of that problem by getting their shoe sizes and told them the next day, we would deliver Jordan’s and Van’s to them from his sneaker store, High Point.  How crazy generous was that?  He stayed true to his word and the next day I met E at his store and we pimped those kids out with not only new shoes, but hoodies, stocking hats, socks, and watches, etc… Poppy and I dropped everything off and got the nicest phone call a few hours later about how excited the kids all were.  It felt so nice to be able to know that we were a part of making those kids smile for at least a few hours.  Adrian Wilson will forever go down as a hero in my book and I will forever be grateful that I was able to be a part of it.

I had a really hard time on Christmas Eve.  I picked your daddy up at the airport and was a total mess.  We ended up going into town to finish  up some last minute things and all I could really do was sob in the car while he tried to have some what of a conversation with me.  “Who is coming up to your parent’s tonight?” he asked me at one point.  I named out, “X, Y, and Z… and not Ronan!!!” I was sobbing, panicking, and not really breathing very well.  At some point while he was in a store that I could not go into because of my grieving mother of madness appearance, I got on my phone and started distracting myself with my Instagram feed.  The first thing that popped up was Taylor’s account as I guess she had just posted a new picture.  Through my red, swollen eyes I looked at the picture of her and her brother, in their matching Christmas pajama’s. Talk about adorable. Upon closer inspection I saw she was wearing something on her head.  It wasn’t just something, it was your Spicy Monkey Spirit Hood that I sent her.  I smiled though my tears and as your daddy got in the car I showed him the picture.  “Look, Taylor is wearing Ro’s hood.” He squeezed my hand and said something about how that had to make me feel a little bit better.  I told him it did and the timing of seeing that picture could not have been better.  It came just when I needed it most. To me such a simple thing served as a little reminder that there is so much good in this world, even during the hardest of times.  It also gave me that little extra push I needed to get through the rest of the day and night because Liam, Quinn and Poppy deserved to have a beautiful Christmas, Ronan, despite the always empty chair at the dinner table that will never be filled.  Thank you, sweet Taylor.  You make the most beautiful little spicy monkey and you have no idea how much seeing that smile on your face meant to me.  I hope you and your family had the most beautiful Christmas. I love you so much.

Christmas is over and we all survived.  I went out in the early morning before everyone got up to have some time to myself.  I talked to your Sparkly before I had to face the reality of you were not coming downstairs to unwrap the gifts we had bought for you.  He was working on Christmas of course and I gave him my best, “Are you busy saving the world today,” before I decided to sit on the phone and let him talk me through my tears.  I pulled over and listened as he did his best little pep talk which mostly consisted of “I’m so sorry and you know there is no good reason for this… Ro should be here with you.” I told him I knew, I loved him and thanked him for calling me as I knew his words would help carry me through the rest of the day like they always seem to do. They did and I let myself get as lost as I could in your brothers and that Poppy girl.  Watching them and seeing the smiles on their faces made Christmas some what bearable this year.  Poppy’s energy seems to be infectious to us all in such a good, positive way.  Thank you so much for her, Ronan.

It is good that we are away in Washington State for Christmas.  I was really needing a break from the never-ending sunshiny state that sometimes drains my soul.  I don’t think I can ever spend a Christmas in Arizona again.  I mean, of course I would if Liam and Quinn wanted it that way, but they are always so excited to come here.  Here it is dark, damp, dreary, and I can run for miles while getting lost the thickness of the fog that forever feels like home.  Here, I can breathe and I don’t have to constantly be wearing sunglasses to hide my tear soaked eyes.  Here, it just looks like my face is covered in the raindrops that are spilling down from the sky but we both know the truth, right Ro? And here that truth feels o.k. I’ve missed this place so much.

Sorry for the massively long update of everything and nothing. So much more to say, so sad I haven’t been writing, but I promise to get back to this once my book is finished.  I love you.  I miss you.  I hope you are safe.  Sweet dreams, little man.

xoxo

P.S. A HUGE thank you to Adrian Wilson again for the beautiful thing you did.  You are the definition of a beautiful soul.  Now, if only we could get that NFL to go GOLD for all the kids during the month of September…

P.P.S- Tyler Knott, you are the bees knees. Now please marry Ally. Thanks so much.