Tag: ronan thompson
Dear Empire State Building, Part 2
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.
I thought I was ready, but I’m not ready.
Ronan. It’s normal to sit partly naked on a table at your OBGYN’s office and cry, cry, cry while waiting for her to come in a check your cervix, right? I was really trying to avoid this today. I had my nose busily buried in a book that I was reading on my iPad, but somehow it was as if my hands were not my own anymore and the next thing I knew I was swiping my fingers across all of my pictures on my iPhoto only to be staring at you and your big blue eyes while I waited for Dr. Schwartz to see me. I can usually do this and be o.k. I mean, I look at your pictures all the time, but today looking at them left me with tears streaming down my face and wet spots all over my iPad. There you were in every picture, smiling your beautiful smile at me while I traced your mouth with my little pinky as if I were actually touching you. I listened to the voices screaming in my head that it couldn’t really be this way, that my darling, sweet boy, didn’t really die of cancer. The flashbacks began. The ones that forever haunt my mind. The way I watched cancer eat away at your little body, mind and soul. The pain that set in during your last week or so that I could not rub or kiss away no matter how hard I tried. Your sunken eyes, bloated belly, cold lips and stiff little legs. The pain that I now feel every single day and the sadness that never goes away. Now the harsh stares, un welcomed judgment about the grief that I carry around with me. The grief that nobody will ever truly understand but they sure can pretend as if they do while voicing their opinions about it while judging away. The baby sister that is now almost here that will supposedly heal my broken heart according to the world around me. It’s like the outside world thinks she is the magic pill that I’ve so been searching for but will never actually swallow no matter how hard they try to shove it down my throat. Those who know me well, understand my truth. Those who know me well, know that no amount of time, love or even a new human being will ever take away my pain of having to live my life without you and they don’t judge me because of that. It only seems to make them love me more. Those are the people I surround myself with. The handful of people that are not afraid to be a silent witness to this pain and only fill us with unconditional love. They lift us up not bring us down with their words of kind compassion, non-judgemental stares, and they are just so proud of us for still being here and being a loving family to one another. There are no expectations, no whispers of he’s in a better place, or she is doing everything wrong. I hear the whispers and I am very aware of who is doing the whispering. It’s like I have a sixth sense for those things and I have learned that the whispers will always be there, but I have a choice of whether or not I hear them. I mostly choose to tune them out because I know at the end of the day the proof is in the pudding and the pudding being your daddy, your brothers, and the amazing friends that have become family. Not to mention your Nana and Papa Jim. I always say I swear I could murder someone and your Nana would still say, “I am so proud of my daughter.” I know what it is like to be unconditionally loved, thanks to her. She has taught me a very valuable lesson through all of this. One that I could never repay her for or say thank you enough for. That’s the great thing about your Nana, too. After everything Ronan, after all of her love, support, strength, sadness, help… she would never look at me and say, “You owe me for this for all I have done for you. Or you hurt my feelings because you don’t pick up the phone. Or you are being selfish, rude and need to get over this.” She would never make this about her in any way shape or form. She is absolutely the most selfless person on the planet and I only hope that I too, am silently following in her humble footsteps. I know how much she misses you and misses me. I hope one day that I can start picking up the phone more like I used to when you were here. I am thankful that she does not take any of this personally because she knows that I am just doing the best that I can and to her, that is more than enough.
I cleaned myself up before Dr. Schwartz came into the room. I know I looked like a bloody mess as my entire face was blotchy and red. I was quiet when she came in to see me today and asked me her usual questions and went on with her exam. I told her how I have been getting sick again. Mostly during the middle of the night the throwing up starts. I won’t ever know if it’s your sister or my body’s way of reacting to my grief. I have a feeling it’s a little of both. She checked my cervix and measured my belly which is still measuring a week ahead of time. “O.k. it’s not going to be much longer now. You’ve dilated quite a bit. Let’s put you back in a room to see what’s she’s doing and watch your contractions.” I headed back out into the waiting room to wait for a room to open up. There was a girl out there, waiting with her little boy. I tried my best to avoid eye contact, but she smiled so I of course said hello. I was a wreck and listening to the little boy call out, “Mama!” was enough to make my eyes well up with tears as that is what you always called me. He was so cute but I refused to look his way as I knew what was going to happen if I did. I was doing a pretty good job of reading my book until his little car came flying at my feet because he had thrown it across the room at me. This made me laugh as I bent down to pick it up as it is so something you would have done. I returned the car to his mama and she shyly looked at me and said, “You’re Maya, right?” I smiled and said that I was. The girl told me how she has been reading my blog forever and how she actually saw me a couple of weeks ago out and about but didn’t want to come up and bother me. We sat and chatted for a bit while I tried not to get lost in the blue eyes of her little boy. She could not have been sweeter and told me how meeting me had made her day. I gave here a ziplock bag full of your bracelets that I just happened to put in my purse this morning. I knew there was a reason that I packed them. I don’t always leave the house with a bag full of your bracelets, but today I felt like I might need them. I’m so glad I was right:)
I finally got back to the room where my contractions were monitored and your Poppy sister was, too. Dr. Schwartz came in and read the results and told me due to my contractions, she wouldn’t be surprised if she saw me before Friday which means I could have your Poppy sister at any time. I thought I was ready for this but I think I’ve changed my mind. I’m not ready and I’m bloody scared as hell. The only part of me that is ready for this is my body. My tired body is more than ready to have this baby girl. My heart and my mind aren’t so sure. Can I do this doubts fill my head. Your Sparkly promised me that I indeed, can do this. I know he is right, but it doesn’t seem to be making things any less scary or sad. My excitement for your sister seems to have been put on hold due to the anticipation and emotional roller coaster of tears that will not seem to stop. I can’t seem to stop thinking about the fact that you won’t be here to hold her, love her, kiss on her the way I know you would be doing if you were here. I try to calm myself about this by letting my heart remind me that although you are not here, you will forever be watching over her, guiding her and protecting her in ways that only you can do. I would give anything for you to actually be here, teaching her all sorts of naughty things and causing all sorts of trouble but as I’ve learned the hard way, beggars can’t be choosers.
I’ve got to run, Ronan. Your Bri Bri aka, my little sissy is in town for orientation at ASU. Can you believe that? I don’t know where the time went as it seems like just yesterday I was bouncing her on my hip, watching her grow up and bounce Liam and Quinn around and then, you. Now she is all grown up and is finally going away to college to ASU. I’ve listened to her talk about ASU since she was 8 years old and how she would go to school there someday. That someday is almost here and I am so excited to have a little piece of our family in Arizona with us. Your brothers are thrilled. I know she is nervous but we are going to take such good care of her. I so wish you were here to be a part of this with all of us. You loved your Bri Bri so much. You two and your big blue eyes were quite the pair. I can’t wait for Bri to meet this Poppy girl. I know she is going to be so helpful with her the same way she is with your brothers. Best little sissy ever;)
I miss you. I love you. I hope you are safe. Sweet dreams, little one.
P.S. I just wanted to say a thank you to all of you lovely souls who have been sending the sweetest little gifts, cards, and even a few Poppy things. I even got a little Poppy headband and matching socks all the way from Ireland a couple of days ago. You all are the most thoughtful creatures on the planet. Thank you for loving my little boy and our family so much. Thank you for letting Ronan make you the most beautiful people. It makes my very broken heart, skip a beat. I love you.
I was never going to be ready for today.
Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.
I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.
I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.
The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well. I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.
I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.
I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.
Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.
I miss you. I love you. I hope you are safe.
P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.
A SPLENDID Event!
Please take a minute and read this article. This is so important to me, and to the MISS Foundation. Grief is not a psychiatric illness, and should not be treated like one.
Ring Ring! It’s The Katie Couric Show!
Ronan. Hi. I miss you like crazy. Do you know what I was thinking about today? That I think I think about you, 24 hours a day. I think about you with every single thing that I do. Whether it be watching your brothers, seeing the pain behind your daddy’s eyes, brushing my teeth, driving my car, doing the laundry, working non-stop on your foundation. You are never gone from my thoughts. You never will be. You are the reason so many things are happening. You are the reason I have not given up. You are the reason I have not just buried this all deep down inside of me, never to be talked about again. Your daddy said that to me tonight. That some people think we should just bury this all deep down inside because it is too sad to continue living this life where all we do is miss you so badly. That we should just move on. I just looked at him and said, “Yeah, bury Ronan deep down and not ever talk about him or this again. That’s exactly why this fucking bullshit never changes and that is exactly why kids are still dying. That is fucking bullshit.” I will never bury you, Ronan. I will never bury you which is a big reason why I didn’t put you in the ground. I could not stand the thought of having your “body,” anywhere but with us. I know better than anyone, how sad and hard all of this is. How sad and hard it looks to the outside world. But I think it would be even more sad if after you died, I just decided to walk away and forget about everything that we you had been through. You deserve better than that. These kids deserve better than that. You are too beautiful of a soul to ever be forgotten. You are going to be the reason that things start to change. I always knew you were going to be the poster child for something, because you were that beautiful. In my naïve mind, I just always thought you would be a model for GAP Kids or something. Not because you were murdered by cancer.
I got a phone call yesterday. Another one of those phone calls that just happens and no matter what the news is, I always feel myself remain so calm. I know I am calm by nature, but you’d think I’d start flipping out a little bit by now. Maybe it’s also just my intuition. That I know the most amazing things are just going to happen and I have seriously felt like this one, was going to end up happening for a while. Let me back up a little bit, to one of my “one of those signs,” stories. Last year, remember when I jumped ship and just out of the blue said to your daddy, “I need to leave. I need to go to New York for a while. By myself.” He went back and forth with me a bit, but was totally supportive. I went to New York. The city the makes me feel the strongest. The city that makes me feel closest to you. The city that brought me back to life. I had the most amazing time by myself. I spent it walking the streets. Running Central Park during crazy midnight hours. Visiting shops. Eating at our Fo Yo place. Reading. Spending time with our Fairy RoMo. I found a bit of myself again in that city. Your daddy came out for the last few days. It was around 4:00 p.m. and we were walking the streets close to where we were staying. The most adorable lady came walking past us, looked us both dead in the eye and gave us the warmest smile. I mean so warm, that it could have melted butter. I looked at your daddy. I said, “That was Katie Couric!” He said, “It totally was.” I turned around. “I’m going to give her one of Ronan’s bracelets! She needs to know about him!” I started walking the direction Katie was headed, just in time to see her go into a small shoe store. I hesitated. O.k. Wasn’t meant to be. I thought to myself, “There is NO way, I am going to chase that lady into a shoe store.” So, I didn’t. I just let her dazzling smile and kind eyes, be enough. That was such a profound moment for me and always stuck out in my head. Fast forward to Tuesday. I got a phone call. I called the number back. I got Katie’s assistant who told me that Katie had heard about our story, and would love to have me on her show. I, of course said I would be honored. I cannot think of a better person, that I would like to sit down and talk to. I am so honored. So beyond honored. Remember how I said I wouldn’t stop screaming about you, until people started listening Ronan? I promised you that. I think people are starting to listen, now. I think this world of childhood cancer, is finally going to start getting the attention it so very badly deserves. I think a girl named Taylor is a big reason of why this is all happening. All because of her huge heart and her old soul. She is pure magic and I will forever be so thankful for the most beautiful gift from the most beautiful girl.
Today, I worked on some details for the show. I’ll tell you more about it, when I find out some more things. Today, I took your brothers on a play date as they didn’t have school. It was a district holiday, but really it was for Yom Kippur. But you know in public schools, you can’t say that. Because that makes perfect sense. NOT. Kinda goes along with the same way they cannot call Halloween, Halloween anymore. So ridiculously stupid. So today, it being a “district holiday,” we had a play date with my good friend, Melissa and her kids. My good friend, Melissa that has stood by me through all of this and never went anywhere. My good friend that never judged me, hurt me, left me, or pushed me. She loves you so much. I remember how much you used to love the sound her phone made. That little chirping noise when she got a voicemail or something. I remember how many times she sat at the clinic with us and helped out with you. You want to know the thing I love most about Melissa? That through all the good things that are happening, she never forgets the you part in all of this. Through all of her smiles with everything good that is coming our way, I still see her sadness over the fact that you are gone. She doesn’t hide the and she ALWAYS talks about it. What you see is what you get. I love that so much. She is so genuine and so true. I am so lucky to have found her at one of the worst time of my life, right when you were diagnosed. I am so thankful she is still here.
We played today and on our way home I said to your brothers, “Oh god. I’m going to puke.” Your brothers started to scramble. “Here Mom! Here’s a Trader Joe’s bag!” They passed it to me in the front seat, just in time. It’s only looking back now, that I am laughing at myself. I could have at least pulled over, but no… not me. I puked my guts out in that Trader Joe’s bag, while continuing to drive us down our quiet road close to our house. I’m such a muli-tasker. The rest of the night has consisted of me, throwing up. I thought I was getting past this point of grossness, but today, I feel sicker than ever. Fun times, I tell ya. This better clear up, before Katie. I would not like to puke in a bag on national television. Come on, Poppy. Work with me a little.
Alright little man. I’m going to rest my weary head. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.
P.S. Ronan. Tomorrow is Fernanda’s Birthday. You know what to do. Make sure she has the most special day. Make sure she feels you everywhere. Happy Birthday to my most special friend. I love you.
“Hey Maya, it’s Taylor Swift…”
Ronan. Do I even have words to write about what happened today? How can I find the words to write about this tonight? It’s taken me about 10 hours to process the phone call I got this morning. It all started with a voicemail.
“Hey Maya, it’s Taylor Swift…”
“What???” I thought to myself. Taylor Swift just called my cell phone. O.k. take a few minutes and process this. I was waiting for your Mr. Sparkly Eyes, so I sat with this voicemail for about 30 minutes, until I was done visiting with him. It was only after I was getting up to leave that I said to him, “Taylor Swift left me a voicemail earlier.” I let him listen to it. “Really? You need to call her back,” he said. I calmly said, “I will do so, when I leave here. I wonder what she wants.” He chuckled and said, “You are something else. Nobody else in their right mind would be calm about something like that.” I left there smiling with not a clue as to what was to come.
I got into my car and was headed to Dr. JoRo’s office, but I decided to pull over to return Taylor’s phone call. I was expecting to talk to her mom, since she had told me on her voicemail that she was getting on a flight to New York City. To my surprise, I was patched into Taylor herself.
“Hi Maya! How are you?” she said in that sweet darling voice of hers.
“Hi Taylor! I am well, how are you?” as if she was just another one of my everyday friends.
My calmness soon turned to complete and utter frozen shock when these words came out of her mouth.
“I wrote a song for Ronan,” she said. The tears started pouring down my cheeks as soon as I heard her say those words. But her words didn’t stop there. Not only did she write a song for you, but she wanted to know if it would be alright to preform it on the nationally televised Stand Up 2 Cancer show which is on every major network and is seen in over 100 countries. She wanted to know if she could use a picture of you in the background while she sang the song. She wanted to make me co author of the song with her. She talked about how from reading this blog and following our story, has inspired her and how amazing she thinks I am and all I am doing, to bring awareness to childhood cancer. She went on and on about some other things, which I tried to understand and reply to, but I couldn’t focus on a thing besides the fact that she wrote a song, for you. That she hadn’t forgotten about your beautiful blue eyes and our love story. One so powerful that Taylor Swift decided to write a song about it. This cannot be real. But then I remembered, this was you she was talking about. Of course this is real, because you are that beautiful and that amazing and our love is that strong. I don’t even remember what I said to Taylor as had buried my head into your blanket that I take with me everywhere and all I could pretty much do was cry and tell her thank you. How do you even find the words to thank somebody for something like this? I was a blubbering mess telling her how much this meant to me as she was helping me keep your memory alive and helping me to do amazing things. How if I had to pick my dream person to be tied to your name, it would be her because she is full of so much pure goodness, just like you.
I got off the phone and I was shaking, crying, and could not even form a thought. I called your daddy. He was so quiet after I told him the news. I yelled at him in the phone, “Are you there? Why are you so quiet?” He said he was so quiet because he was crying. He couldn’t believe what had just happened.
My day was shot after that. I picked your brothers up and let them listen to the voicemail from Taylor. They were both smiling but couldn’t wait to tell me about who got hit in the face with a football at recess. I had to act like that story was half as exciting as the one I had just told them. Good thing my acting skills are becoming better. Yeah, football story… just as awesome as my Taylor Swift story. You gotta love 9 year old boys, right:)
I have been thinking about this all day long. I am not proud of myself very much anymore because you died and that just ruins any sort of goodness that I am able to feel most of the time. Because of the whole, I was your mama, I promised you I would get you better, and I didn’t. To me, that is still unforgivable. I know your cancer was out of my hands, Ro, but you know it destroys me that I broke my promise to you. Today, I let myself be a little proud. Do you know why? It’s because of that whole following my heart thing. When Taylor invited me to her concert last year and I had the chance to spend a little time with her, I just knew she was going to do something amazing, on her terms and her time. I had so many people trying to push me and saying, “You need to reach out to Taylor Swift. See if she can help you get X,Y, and Z done for Ronan’s Foundation. See if she will donate this or that or do this or that.” I just responded with, “No thank you. I’m not going to do that.” People looked at me as if I were crazy, but asking something of Taylor, just felt wrong. I always kept it to myself why it was that I was not going to reach out to this very generous girl, who out of the kindness of her heart, invited me to her concert, only to take to time to talk about you, with me. To me, that was enough. I was so thankful just to hear her say your name out loud. That was so much more then I could have ever asked for. I always went back to, if Taylor does something for Ronan, it will be something completely organic and natural, not because she felt pressured or forced to. Not because I asked her to. I didn’t ask, Ronan. I sat back and just let the world work in the way which I have always known it would… because it was meant to be. Because I feel the best things that happen in the world, just happen naturally, when they are supposed to and when the universe comes together. I mean, I get the news that I am pregnant only to find out about a week later, that Taylor Swift wrote a song just for you?? That is you working your magic in a way that I cannot even wrap my head around. It’s been so long since I’ve had so much good come our way that I don’t even know what to do with it all.
It’s been 5 days since I got the Taylor call. I’m having to keep this hush hush for now which I totally understand. I am still in complete and utter shock at this point. The timing of all of this is really unbelievable. How the stars and the universe are just aligning at just the right time. How everything that I knew would happen, is just falling into place, naturally. The way that I always trusted in myself and you, to make this all happen. If you had to die Ronan, and I have to live on this earth without you… you can be damn sure, I am going to make something amazing come out of it. This is by far, the most amazing thing that I could ever have imagined… times 1,000,000,0000. I could not have dreamed up any of this happening, in my head. How that girl, with the most sparkling blue eyes, that remind me so much of you… is about to finally give a face and a voice to childhood cancer that it needs so desperately. Now, people will want to pay attention. Now, maybe childhood cancer will get the awareness/funding/and attention that it deserves. Now, maybe less children will die in the future due to somebody huge, stepping up and caring. Taylor Swift, just changed the face of this disease and all I can do is sit here and sob about it. But I am sobbing in a way that I never sob anymore. Because I am so unbelievably happy, Ronan. This is all because of you and our love story. One that will live on forever and do such good things in this world. All with the help of an amazing girl who just happens to be named, Taylor Swift. She could have done this for anybody, Ronan. Anybody. But she didn’t. She did this for you and for us. Because she knows and believes in us so much, that she is giving us the biggest gift that we could have ever received. The gift of an eternal love story between a mother and a child. One that will never end. One that will keep on living forever and soon the entire world is going to know about the most beautiful little boy, who changed the lives of so many because of the love he had for the short life that he lived on this earth.
I love you to the moon and back my spicy monkey boy. Thank you for all you are doing. Thank you, Taylor for this gift you have given us. I promise to make you both proud of all the goodness that is going to come.
I miss you, Ronan. I miss you, I love you and I hope you are safe.
Cancer is a whore. My friend, Robyn, told me so.
Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.
We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.
I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.
I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.
I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.
I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!
I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.
I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.
Though she be but little, she is fierce!
Ronan. Cancer doesn’t rest so why should I? I know I just got home from California, but I am off again. I’m on a flight as we speak. I’ve had this trip planned for a while now, but I just haven’t brought it up. I’m in route to Grand Rapids, Michigan to visit Dr. Sholler. I have some things I need to talk to her about. Some things that the wheels in my head, won’t stop spinning about. I told you I’m not in this to sit back and do nothing. I am in this to do big things and I have some really big ideas. I will share them when the time is right, but as for now I need to keep them to myself. Until I have this master plan of mine, all mapped out to a tee. I’ve been working non-stop on this plan of mine which is actually really all of yours. Everything I do is for you, fueled by you, and motivated by you. I don’t want any of the credit for this is not my plan, it is yours. I truly believe this. This is just the way this has to be. Go big or go fucking home, right? Without a doubt.