Tag: Childhood Disease
Huffington Post and The Empire State Building
Through Ronan’s story, I have come to know the most beautiful people who are so passionate about this fight. I am so proud to call this little gem, Rainesford Alexandra someone who inspires me everyday to be a better person, leader, and fighter. If this is what our youth of today looks like, our world is going to change in a very bright and beautiful way. Thank you sweet girl for all of your help, friendship and passion. Please share this story and know that together we will change this. I am determined and hopeful that we will see The Empire State Building, Go Gold. xxoo
I promise you all…
I have been in the middle of writing on my blog for weeks now, but I have had so much to say that my post has gotten insanely long. I was going to try to finish it tonight, but between being so wiped out because all of my babes are sick this week, book writing, and very little sleep… I don’t know if it is going to happen. I also now have to write a blog post about something that I am VERY upset about which is going to cut into my updating you all even more. In the past, I have requested to have the Empire State Building lit up Gold for one night during the month of September to shine awareness on childhood cancer. My requests have always been denied for some really lame ass reasons. They light it up for pretty much every cause out there, but apparently childhood cancer is not good enough to be one of them. Last night it was lit up green for the new Teenage Mutant Ninja Turtles (Go turtles!) Seriously, WTF? You can light it up for a movie, but not real life heroes like kids who are fighting cancer??
I am LIVID and I am in the middle of writing a “DEAR EMPIRE STATE BUILDING” blog post, but I am not sure if I will have the stamina to finish it tonight. I am not the only one upset about this. The whole childhood cancer community is in an uproar and is blasting this all over social media, but whomever is running the social media for the Empire State Building keeps deleting all posts related to why they should go gold for one night during the month of September. I am going to leave you with this post tonight, written by somebody else until I can finish my own. We need to get moving on this. We need them to do the right thing and change their minds. I know the hard way how little attention childhood cancer gets. My son died because of it. Lack of awareness equals lack of funds and lack of funds is why childhood cancer is the number one disease killer in America.
Please help us out in whatever way you can. Make phone calls to the media about this, leave comments on the Empire State Building’s Facebook Page, Tweet this, anything you can think of to let them know that we are not going to just go away. Our kids fighting cancer do not have a voice. It is up to us as adults to advocate for them. Please use the hashtag #empiregogold. I truly believe if we all come together, they will do the right thing.
WHY THE FUCK IS THIS SO COMPLICATED? ALL I WANT IN THE LIFE BESIDES MY SON BACK IS FOR NO OTHER CHILD TO EVER HAVE TO GO THROUGH WHAT RONAN WENT THROUGH AND NO OTHER PARENT TO HAVE TO KNOW WHAT LIFE ON THIS EARTH IS LIFE BECAUSE THEIR CHILD IS DEAD.
Childhood Cancer needs all the awareness it can get, otherwise things are never going to change and that is just an unacceptable world to live in. I won’t stand for that and anybody that knows anything about this world, shouldn’t either.
Thank you all always for all that you do. This is a war that cannot be won alone. New York is my favorite city in the world and I am truly hoping this can be turned around in a positive way.
I promise to post soon. If Poppy will get off my boob so I can actually finish typing. For now, read this. Get mad, get angry, don’t stand back and do nothing. Please. I am begging you.
If you have a little time on your hands…
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
That time I went Inferno hiking and almost didn’t make it down the mountain, because sometimes I’m an idiot who does stupid things.
Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.
Hiking Camelback on a normal temperature day is not an easy feat. Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell. I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on. I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly. Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me. I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb. I had to stop quite a few times which I normally don’t do. After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top. I’ve never not made it to the top, so this was a first and I was not happy about it. But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff. I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me. You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place. I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly. I started to get really disoriented and dizzy from the heat. I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out. I got to the part where you have to hold onto some rails to climb back down. I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore. I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell. Did I want to die? I was so out of it at that point that I couldn’t really answer my own question. I let my mind drift and wander to those morbid places for a couple different reasons. One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places. I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much. I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.
I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom. He offered to come and get me and of course I said no. Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on. I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor. I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes. For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity. Do you think I learned my lesson and will never do that again? You know me better than that, Ronan. You know I’ll be back up that mountain in no time to do it all over again. I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.
A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain. I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail. I googled the story and found it almost immediately. He was 23, from Washington State and his dad was pleading for his son’s life. I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts. Could that have been him? In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain. My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief. My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found. It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days. On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid. It had been 3 days and I knew if he was up there and found, that it was not going to be good. Still, I asked whoever is in fucking control of this life, for a miracle. Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress. My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about. Please let him be alive. Please, please, please. I came home and checked the internet for the news. A few hours later the updated story was posted. A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday. The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock. The numbness. The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too. It’s been over a week and I can’t stop thinking of this kid and what happened. I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.
I talked to some of the regular hikers after it happened. Eric’s body was found about 500 feet below the summit. They showed me where he was found as I wiped the tears away from my face. The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented. The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be. And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die. Sometimes I just want a break from all of this pain though. I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.
Your brothers turned 11 yesterday, Ronan. I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do. I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you. They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means. You were missed yesterday so very much.
I’m going to run now. It’s 4 in the morning here and I’m back to keeping the hours of a vampire. Up most of the night and functioning on just a few hours of sleep. It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left. Dr. Sholler is actually going to be at our house in about an hour. She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot. No way I would ever take that precious cargo to the inferno. She has too many kiddos to save.
I miss you. I love you. I hope you are safe.
Bye, little man.
I kind of think I might do this one day.
“Desert Runners” is supporting The Ronan Thompson Foundation during the month of June! The film follows ordinary people pushing themselves to extraordinary limits by competing in 4 ultra-marathons in the most treacherous deserts in the world.
Much like how RTF will never quit on funding for new treatments and defeating childhood cancer, these runners will never quit on their goals.
The film is available for download at http://buy.desertrunnersmovie.com/ Any amount of money you choose to spend over $9.99 will be donated to the Ronan Thompson Foundation for us to pursue our goals and fund cutting-edge childhood cancer research. Enter the code: RONAN at checkout and receive a 10% discount on the film!
If you spend over $11 you will unlock the SUPERFAN PACKAGE and get access to over 30 minutes of bonus content including interviews with the director, cinematographer, executive producer and the desert runner himself Ricky Paugh.
We are so very excited to be a part of this amazing adventure. Clink on the link below to watch and support RTF! Thank you, Desert Runners for choosing RTF as the charity to support!!
The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.
Ronan. I didn’t die from the fuckwad of May dates that I had to get through. The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it. We went away for May. It was as good of a trip as it could possibly be, despite the circumstances. We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright. On the day you died, I didn’t sleep much. I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that. I said what I always say which is how I hope he never forgets how much you loved him. How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now. He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.
“Are you o.k.? That is a stupid question. I know you are not.”
I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason. I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was. I thanked him for calling and told him to please go and do something for you today, besides work. He said that he would.
We spent the majority of the day, outside in the cooler temps by the ocean. We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool. We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter. Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge. Now I am able to dance and sing to it and I know that is all because of her. How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.
We spent your birthday in the city. We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House. We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer. Your daddy hadn’t met Scott before but they talk a lot on the phone. I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world. It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday. She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.
After our impromptu meetings, we continued to do all your favorite things in the city. Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis. It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day. Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down. She seems to have turned a corner since turning one and I’m not sure there is any going back. Miss Independent EXTRA spicy Poppy it is. I, of course wouldn’t have it any other way.
We walked as much of the city as we could. Stopped for a little pit stop in Central Park so Poppy could actually do some real running. I plopped down in the grass, exhausted from a beyond mentally exhausting day. Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky. After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see. My little, Rachel, came walking over soon after as she had been trying to find us in the park. Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright. I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets. I had to do something spicy, so I climbed up the tree and sat there for a bit. I can’t remember the last time I’ve climbed a tree and I wonder why. It was lovely up there and so something you would have done. At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time. We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time. I told them I wanted to drop them off to give out to the family’s that were staying there. I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this. I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love. I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.
Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours. You always will be mine, even if you are not here but somewhere else where I know I will see you again. I wish knowing that made things hurt less, Ronan. Sometimes this pain is all too much.
I miss you. I love you. I hope you are safe.
On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.
That soft touches will change you and stay with you longer than hard ones.
That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.
That you control that completely.
That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.
That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.
That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.
That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.
That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.
That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.
That rain is beautiful.
And so are you.
I have something new to share…
This has been in the works now for some time now, but we’ve just been being a little quiet about it. As a board, we decided RTF needed a new logo. It was hard for me to part with the baby seal, as it had sentimental value. Nobody really understood why we had a seal as our logo. It was because “Ronan” means “Little Seal” in Gaelic, but most people don’t know that therefore the seal was confusing. We were getting a lot of, “Are you trying to save the seals or what?” No dudes, we’re trying to save kids with cancer… how do you not get that from looking at a seal? (kidding. I know it is confusing if you don’t know the back story)
We met with some very talented and kind people at Fervor Creative for hours upon hours. I even had them revamp your seal logo before my board members told me they were just not feeling it anymore. So I took Tanya and Fernanda to have yet another meeting with them. We sat and talked about you and the things that came to mind when we thought of you. I had a picture in my mind of something really simple. A boy wearing a Fedora. With his head held high, like you alway had yours. We also talked about stars and the significance of those to us. I knew having Fernanda with me was vital to getting this done finally the right way. She has a way of expressing her thoughts about what you represent in such a beautiful way and sometimes I am too sad to do so.
We got some samples back and as soon as I saw them, I started to cry. What they came up with is beyond perfect and I am beyond in love with it. I sent it to your daddy and he had the same reaction. He said it reminded him of the book, “The Little Prince” which he loved to read to you. I knew from both of our reactions, that this was perfection.
So, here you go Ro and supporters of The Ronan Thompson Foundation. Makeover complete. Thank you to Fervor Creative for taking a bunch of rambling words full of such love and pain, and turning it into something as beautiful as this. You have hearts of gold for taking this on and not charging us a dime. We are forever thankful for what you have created for us and promise to continue to do good things in this world with the gift you have given us.
May, May go away. Do not come again another day.
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.
Wait… Poppy is one? How did that happen already??
Ronan. I don’t live in a normal world anymore. I live in a world that I often feel very alone in, but I tend to do alright in this world. This world without you is so hard for me to live in, but I have done my best to make it bearable by living each day as fully as I am capable of because I know how precious each day truly is. You might say this new perspective has given me a clarity I never had before and I myself as a human being generally feel pretty fulfilled; minus the always absence of you in my life. I keep you tucked away as close to me as possible and carry you with me in everything I do which seems to get me through the toughest of times.
I was at lunch the other day and ending up sitting next to a table full of mom’s who were doing PTO stuff for their kids’ school. I knew a few of them so of course I waved, but I really wanted to just curl up and cry. I glanced their way every so often and could hear them talking so excitedly about the money they had raised and the upcoming fundraiser they were putting together. What it must be like to be able to live that life of a normal, no cancer has ever touched their kids, PTO mom. My mind wandered back and forth between “I wonder if this is what my life would have been like if cancer had not killed my baby” to “Please let Nela beat this cancer once again, Ronan, as her mom just told me she has relapsed.” You see, even when I try to do normal not cancer mom things, it’s almost impossible for my mind to just let go of the swirling thoughts I have about you, you getting cancer, you dying, all the other kids that I know are being diagnosed, the ones who are not doing well, etc… I have come to accept the fact that I cannot do it all and I’m just no longer cut out to be the PTO mom because that life as I maybe would have known it, flew out the window a long time ago and I don’t see it coming back anytime soon.
I have a 23-year-old best friend. A 37-year-old best friend. And a 68-year-old best friend. The three of them all entered my life because of you. My relationships with them are each so different, so unique and so special. Not only do we have one common denominator in our lives, which is you; but we also have another one which is this fucked up world of childhood cancer. My 23-year-old best friend sleeps in your bed a lot. She pretty much should just move in with us at this point and if I did indeed have a guest house, I would totally let her live in it. We do a lot of silly things together which mostly consists of drinking too many Kale drinks in one day and having ridiculous dance parties to really bad rap music with Poppy. We also do a lot of quiet things together, too. We hike a lot while we ponder stupid things like, “If you could come back as a boy or a girl in your next life, what would you be?” We do a lot of intense things like cry on the phone and kick and scream and cuss about things that are so fucked up but are not my things to talk about on here. She sends me poetry in the middle of the night or things she is reading out of books and I do the same for her if something really strikes me as so painfully beautiful, that only she would understand. I am watching her in the world as she walks through it and I swear sometimes I see you holding her hand. She is all things magic and beauty and makes my heart sometimes skip a beat. I thank you for her every night in my head. She is my little renege side kick in life and I am so lucky to have found her, because of you.
I also have your New York Miss Macy who you actually did know and love to pieces. She is my sounding board for everything in life and the one I probably cry the most to. She is also the one I laugh with the most. Without Macy, I’m not sure where I would be in this life without you, but I’m pretty sure it wouldn’t be in the place I am now. She keeps me grounded and reminds me that it is o.k. to be sad with someone other then myself. She is flying in this weekend to celebrate your Poppy sister and also because I got us kick ass tickets to the Lana Del Rae concert who is my musical soul mate in life. I cannot wait to have her here and I know Poppy is so excited about seeing her other mom:)
Last but not least is your Sparkly who I can say without a doubt, saved my life. I could write a novel about him but I’ll just talk about yesterday instead. Yesterday was Poppy’s birthday. Her first birthday. Can you believe that, Ronan? I don’t know how she is one already. I wasn’t sure how I was going to be feeling yesterday, so I didn’t make any big plans. I woke up to the sweetest messages from so many people wishing her a Happy Birthday which was so nice, so thank you all. We had a quiet morning at the house just the two of us and ran down to see your Sparkly so he could see his god-daughter on her special day. We brought him a coffee, just like you used to always want to do for him. We sat and talked while your Poppy sister crawled around between the two of us while I opened up the little gift and card he got for her. I was trying my hardest not to cry and I know he could tell I was getting sad.
“Are you going to be o.k. today?” he asked me while I did my best to look him in the eyes as I answered his question.
“Yeah. I’ll be o.k. I just wish Ronan could be here.”
He responded with, “I know you do. I do, too. I’m sorry he’s not, but today is her day and I know he would want her to be celebrated the way she deserves to be, so please go and do that for her.”
Your Sparkly has such a way of being able to recognize my sadness, but can also put things into perspective for me in a way that doesn’t piss me off. He’s is pretty much the only one in my life that is capable of doing that.
I told him I would celebrate your sister and so of course I kept my word. Of course Poppy should be celebrated, but I live in this world where the most beautiful things are also so very bittersweet. I had to sing your sister Happy Birthday last night and you were not there to do something naughty like smash her cupcake all over the floor. I just don’t think I’ll ever get used to that or I won’t ever be sad about that, but I could not let my sadness take away from her day at all. That would not have been fair to her and I know it’s not what you would have wanted.
I ran and picked up Brianna from ASU. We took Poppy to Toys R Us to get her some gifts. I got home and wanted so badly to just throw in the towel and order a pizza instead of cooking the spaghetti dinner that Quinn had requested. I kept hearing your Sparkly’s words in my head. I cooked dinner and we spent the evening outside playing basketball and watching Poppy have a dance party because that is her favorite thing to do in life. Kassie and Brianna stayed the night and we gathered around to sing your sister while a purple star balloon floated behind her, just to remind us all that you are always here. Always. It was a very sweet and simple day as that is all I think any of us could handle.
Today is 35 months without you and today was not a good day at all. I cried a lot. Your daddy cried a lot. I felt extra lost without you today and I don’t know how next month is our hell month of May already and 3 years since you’ve been gone as well as your 7th birthday. God, what I would give to see you as the beautiful 7-year-old that I know you would be. We are going away for May because being in Arizona is never a place that I want to be on the day you died and your birthday. We all need a little time out together so we are going to the Hamptons for a bit where we will see some dear friends, but also be together as a family.
I have to say goodnight now, Ro baby. I’m tired and need to try to get some sleep as I am beyond ready for today to be over.
I miss you so much. I love you. I hope you are safe.