Tag: Health
Dear Empire State Building, Part 7
Dear Empire State Building,
My name is Sabrina Houara and I just finished my first classes at Arizona State University, where I’m majoring in health sciences pre-professional, hoping to finish in 3 years instead of four. That’s me: over-achiever, future doctor, overall nerd, and voice for kids with cancer.
I know with every part of me that I was meant to be a pediatric oncologist, but I may have never found this path if it hand’t been for Maya and Ronan and their inspiring love for each other. Like so many others I first heard Ronan’s story when Taylor Swift first sang her song Ronan, based on Maya’s blog. I looked up the story and spent the next few weeks reading and bawling.
It seemed unimaginable to me that this beautiful little boy could have been ripped from the world so soon, and that so many kids are taken by this awful disease known as childhood cancer. I’m still baffled by the statistics. I knew after just a few posts in that I had to do whatever I possible could to help change this, but I still wasn’t sure how. Then a few days later I approached my parents with an idea: I wanted to be a pediatric oncologist, and they were completely on board. I quickly began forming this idea of what kind of doctor I would be, but I already knew. I would be the kind of doctor I would want for myself, for my own children whenever I have them. I want to be the type of doctor to fight for each and every patient with everything I have, because this is life or death for them. When I tell people that I’ve decided to go into this field I’m usually met with some form of the phrase, “Oh that will be so sad, I could never do that.” But if I can save the life of just one child, it will be worth it to me. These kids will be dying whether or not I’m right there on the front lines, so I will do everything I can as a doctor to help change this for them.
The thing is, it won’t matter how good of a doctor I am (and I plan on being a flipping good one) if we can’t get more funding for childhood cancer. The more funding we can get, the more experimental trials we can fund, and that brings us one step closer to finally finding a cure for this horrible disease that is taking the lives of so many children. The key to getting more funding is to raise awareness, to get people to realize that childhood cancer is a real problem, and that it takes the lives of 7 children every day in the US alone. Those who survive are left with side effects from treatment that will affect them for the rest of their lives. We need for more people to see this, to want to help.
This is where you would come in. Lighting the Empire State Building gold for one day in September would bring heaps of awareness. Many families were seriously hurt when you denied their requests, it felt like you were saying their child didn’t matter. I don’t know any of this firsthand, but it’s easy to tell from the social media campaign that came soon after two non-profits filled out your application and were denied.
You can still make this right. Please find it in your heart to change your mind, for these kids. For Ronan and far too many others. Help us make it so that no parent, grandparent, aunt, uncle, sibling, or cousin has to watch their loved one slowly die as a result of childhood cancer. Help us make it so that no child knows the pain of having their little body invaded by cancer and the horrific treatments that go with it. Help us raise awareness for childhood cancer so we can find a cure and no child will ever die from this killer again. Again I say, you can still make this right.
Sincerely,
Sabrina Houara
Childhood Cancer Awareness Advocate and Future Pediatric Oncologist
Dear Empire State Building, Part 4
Dear Empire State Building,
Unfortunately, my family was introduced to the ugly world of childhood cancer this year. Our lives were turned completely upside down on March 7th, 2014 when our four year old daughter Olivia was diagnosed with Leukemia. Then the following day, when cancer already knocked us to the ground, it kicked us again when we found out the type of Leukemia Olivia had, we were told it was AML. A rare cancer in children that would keep her in the hospital for her entire treatment. Why did she have to be kept in the hospital you would ask? Because the type and amount of chemotherapy she would need to have to fight this horrible disease is extremely dangerous and she needed to be monitored while she received her chemotherapy and as her whole immune system would completely bottom out and come back again.
After finding out Olivia’s diagnosis we had to wait for further tests to see if she would need a bone marrow transplant or not. Fortunately, after her first round of chemotherapy (5 weeks in-patient) she went into remission and this among other good test results she received meant she did not need a bone marrow transplant. We got to go home for 9 days, then packed up and had to move right back into the hospital for her second round of chemotherapy. This time we were in-patient for 4 weeks. Then we got to go home for 5 days just to pack up and move right back into the hospital for her third round of chemotherapy. We were in-patient for 4 weeks again, got to go home for 7 days and then back in for her fourth, final and scariest round which was 6 weeks in-patient. We had always been told once she went into remission that it wouldn’t be the disease that would kill her, it would be the infections that she could potentially get from the chemotherapy wiping out her immune system. Once she would receive her chemo about a week later, her body would have no way of fighting off even the tiniest infection that you or I could with no problem. We watched an infection almost take our baby girl from us in her fourth round. She slowly got worse and worse every day from a cellulitis infection which landed her in the ICU for over a week. She received white blood cell transfusions to help her body fight off the infection which were extremely hard on her body making her get really high fevers that Tylenol (the only form of medication a Leukemia patient can take for a fever) couldn’t knock out. These weren’t tiny fevers either, these were fevers in the 105 range, her highest being 105.9 at one time. After 5 days of these transfusions she then got pneumonia in one of her lungs that almost forced them to sedate and put her on a breathing machine for. We were devastated when her oncologist who usually is the most upbeat and positive person came in to see her and had a very sad look on his face. I completely lost it, begging him to tell me my little girl would be okay. I was crushed when he said, “I’m sorry I can’t do that, we are not good at predicting the future.” His face and tone of voice said it all, he said he was scared and we knew that just by looking at him. But our strong and amazing Olivia fooled us all when she started to get better literally the very next day. We got out of the hospital 3 weeks ago and now we are still waiting for her little body to recover and are waiting on her last bone marrow aspiration results to make sure she is in fact still in remission.
We have had to watch our daughter be put under anesthesia 7 times so far. We have had to watch nurses come into her room wearing hazmat gear while they hooked up the chemo, why hazmat gear? Because they can’t be exposed to the pure poison we allowed them to send through our child’s tubes and into her veins. Once a week (some weeks more than once) she has had to go through “dressing changes” where they have to painfully take the bandage off of her Broviac (the tubes literally hanging out of her chest) to put a new one on. Countless platelet and red blood transfusions. A cellulitis infection on her private area which forced us to make Olivia pull down her pants to show every doctor and nurse who came in her room to check on her. As you can imagine this was extremely hard on her as she has been told and told before diagnosis that we don’t show our private parts to anyone. This same infection required surgery where they had to insert a drainage tube that had to stay in for 2 weeks. I have had to hold her down while she kicked and screamed through dressing changes, x-rays and an NG tube being inserted through her nose, down her throat and into her stomach because she couldn’t keep the disgusting contrast down for one of her many CT scans she had to have. NO child should EVER have to see, feel or know what my four year old has. NO parent should ever have to watch their child be put through any of this. It’s pure hell, nothing anyone can imagine unless you’ve been through it yourself. And trust me, you aren’t exempt, this can happen to anyone.
I was just like anyone else that has never seen a child suffer through cancer – I think Maya puts it perfectly – “blissfully ignorant”. I assumed that all funds received for cancer went to all types of cancers including childhood cancer. I actually assumed that children got more than adults! I remember the first time another oncology mom I met in the beginning of this horrible journey of mine told me that childhood cancer is disgustingly underfunded. I didn’t believe her! I thought, “There is no way we would treat our children this way! Whatever happened to “children are our future”??? That is when I decided to Google childhood cancer and how much money goes to research. I was crazy angry and saddened to learn that because less children get cancer than adults, researching childhood cancer isn’t profitable to the pharmaceutical companies. So basically my child just like the 46 children who will be diagnosed with cancer today aren’t important enough to do more research for.
Olivia will have to get blood work done for the rest of her life to make sure she doesn’t relapse. There is a 35-40% chance she will. 35-40%! I know that doesn’t sound like a big chance but it’s not good enough! For everything she went through to go into remission she should have a 0% chance. That 35% will haunt me for the rest of my life. That 35% is putting me on anti-anxiety medication so that I can at the very least barely get by every time I have to wait for the results from her blood tests.
My family will never be the same. I, now as an oncology mommy will never be the same. Every fever, every bruise, and every illness will send me over the edge. I also have a two year old son whose world was rocked as well. He had to live without mommy and daddy for five and a half months while we spent every agonizing day in the hospital with Olivia.
Have you not experienced this? Have you not had a family member experience this? Have you not had a friend experience this? Be thankful…but then realize that you’ve been made very aware and now you can make a difference! The children with cancer and their families shouldn’t be the only ones who know about this. The entire world needs to know about childhood cancer and then they need to be aware that the American Cancer Society doesn’t do anything for our children. We are on our own, which is why you have so many parents of children with cancer in an uproar. We are their only hope. I will forever fight for awareness. Everyone needs to know what GOLD stands for!
Sarah Dodson
Be Bold Go GOLD!
It’s time to… #BeBoldGoGold!
Get your glitter on! We’re kicking off Childhood Cancer Awareness Month with a bang & a sparkle! Throughout September, we’re turning ourselves into spicy, gold human billboards for childhood cancer awareness and want YOU to join us! Welcome to the #BeBoldGoGold Challenge!
HOW IT WORKS:
-You deck yourself out in your gold bling or glitter—jewelry, clothes, facepaint, you name it, you rock it. You head out into a public place. Talk to at least one person about childhood cancer—tell them a fact, like that 46 are diagnosed with cancer every day. The goal is to raise awareness, so talk to as many people as you can & encourage them to take the #BeBoldGoGold Challenge
-Film/photograph your adventure, and tag us in it! We’re reposting submissions to our new #BeBoldGoGold Instagram, Facebook, and Twitter. When you post your video/photo, nominate 3 people to carry out the challenge by tagging them. They have 48 hours after being tagged to get their gold on! Make sure to hashtag #BeBoldGoGold and #RTF.
-At the end of September, we’re giving a prize to whoever goes all out and makes the biggest impact (aka raises the most awareness)! We’ll also have #BeBoldGoGold shirts available to purchase (link coming soon). If you would prefer to donate instead of (or in addition to) the challenge, visit: http://www.theronanthompsonfoundation.com/ & share the link.
The Challenge kicks off August 29th… stay gold!
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.
xoxo
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.
xoxo
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.
xoxo
Taylor, you will forever have my heart. Thank you for continuing to be such a voice for these kids. I love you.
The treadmill made me do it.
Ronan. So, this happened tonight. The usual running around like mad, Poppy is into everything, I’m trying to get something on the table for your brothers to eat before they come home. I have so much nervous energy today that I haven’t slowed down once. I know as soon as your daddy and brothers walk through the door I will be handing over Poppy to them so I can go and work out because if I don’t, bad things will happen. At least that is what I tell myself in my head. I go to my little class where I find myself in a room full of people that I have no interest in talking to, half are doing weights/floor exercises and the other half are on the treadmills while we are getting instructed on what we need to be doing. I am of course on the treadmill, happily running away while staring at myself in a mirror. My reflection looks sad but determined.
We take turns running at our base pace which for me is a 6.7 speed and 3 incline. We are told to step it up for 90 second all outs so of course I push myself to the max. 5 incline, 8.0 speed. I start to run as hard as I can and my heart feels like it’s going to explode out of my chest, but of course I don’t stop. All of a sudden, I really can’t breathe or catch my breath for what feels like minutes. Then it happens.
Is this how Ronan felt, right before he died?
He couldn’t breathe, he ran out of air, oxygen, and probably felt just like this right before he died.
How could you have let this happen? How could you not have saved him after you promised him that you would? You are the worst human being on the planet. You let your child die and now you just get to continue on with life while he does not? How is that at alright? You should be dead, not him.
Fuck you. You don’t get to stop and sit here and think about how hard this is and how you want slow down and stop. You keep going because you are not the little boy who got cancer and died. You get to be here and do this and you don’t get to stop. Ever.
I stare up at the screen which is monitoring my heart rate and beg for it to come down because if it does not soon, I know I will pass out. I continue with the torture of beating myself up on the treadmill while flashes of you dying and taking your last breaths fill my mind. The person leading the class is now keeping a watchful eye on me as I think he has caught on to the fact that I might be over doing it just a tad. An hour later and I am finished and I somehow make it to my car only to drive home to a house that doesn’t feel like home to me anymore. I head straight for the shower and try my hardest to scrub the images of you not being here out of my head, but it doesn’t work. I then throw myself in my bed, where I cry the tears for you that I haven’t had for a few days.
Your daddy comes in, asking me what happened. I ignore him and continue to cry into our mattress. When I finally come up for air, I snap at him that nothing has to happen, for something to be wrong. That I just want to be fucking sad for the one thing that I will be sad about for the rest of my life. I don’t want to be hovered over. I don’t want anyone to wipe away my tears. I just want to be left alone.
This is all I can say for tonight. I’ll let my friend, Tyler Knott say the rest.
I miss you. I love you. I hope you are safe.
Typewriter Series #690 by Tyler Knott Gregson
There will come a time, a day, a moment when words are not enough.
When the letters hooking to other letters and tying themselves
to each other, the trains of vowels and consonants chasing each other
out of my mouth just won’t do justice to the avalanche that you’re
struggling through.
If this is that day, if these are those moments I will not speak,
but I have no choice but to leave you with these attempts, as futile
as they might be, for words are all I have to offer
and the only currency I believe in:
This is not, and never will be, a goodbye. You should not, and never can
hold onto the should haves or could haves or why didn’t I’s.
The time will come, I promise you, for us all to stop wearing these bodies
atop these souls. The time of taking one long, full and deep breath
in through these lungs only to exhale it out through brand new lips.
The last light we will ever see through these perfect and beautiful eyes
will be the first light, the exact same and blindingly gorgeous first
light that filters through new irises and shocks our tiny pupils
before we blink. What a gift every single day in between has always been.
What a hauntingly painful and sublimely joyous gift to live, truly live
every single day in between these firsts and yes, these lasts.
Do not carry the weight of all you did not say, the times you did not make
the time or the excuses you made, because there is a secret you must know:
Those that leave us, never do. They see us how we never could and how we
were always so scared to. When they go, bravely stepping into the first day
of their new lives, all they pack into the bags they choose to carry,
are the memories that soothe their longing and and settle their aching bones.
It is we, always we that carries the luggage of regret and burdens of doubt
Somewhere, right this very second, they are beginning their journey back
into love. Somewhere, right this very instant, the first wobbly steps in their
search has begun again. Somewhere, the only person that truly makes sense to
them, the only person to ever exist and exist exactly for them, is waiting.
You will hurt. You will cry and you will be scared. You will miss and long
and ache and look for their fingerprints on the life you’re going to lead
without them. You will swear you heard, if only for an instant, the sound
of their laughter or the timbre of their voice. This is ok, and more than
that, this is beautiful. Hold onto the sadness you feel like a trophy.
Hoist it high above your head and shout to the photo that is not being taken
of you that you loved them, you will always love them and you are proud
of the tears that roll down your face. They live inside the memories that give
shape to those tears and you must never apologize for your sorrow, nor your
joy when it too returns to your days.
These are the words for those that remain; for all of us and all of you that
are left scrambling and shaking and weeping tears of compassion and joy and
confusion. These are words when words are not enough. I say them because I
must say them, because words are all I have to offer besides my shoulder and
my hands and my belief that this is not and never will be goodbye.
Today is and always has been such a perfect day to say goodbye,
and to once again, say Hello.
-Tyler Knott Gregson-
ROCKSTAR RONAN 