Dear Empire State Building, Part 3

Ronan, before he was diagnosed.

Ronan, before he was diagnosed.

 

 

Dear Empire State Building,
My name is Payton. I am fifteen, almost sixteen. I have never been in the hospital. I do not have cancer. None of the people close to me have cancer. Still, I am a pediatric cancer advocate. I read the blog of Maya Thompson after I heard Taylor Swift’s song Ronan. This soon led to multiple children on Facebook, who I look for on my newsfeed everyday. One of these children is Lilly Bumpus. She’s a beautiful toddler, in remission. She suffers from side effects of the 75% adult strength chemo she was given. Seizures and tics, with no explanation. She has night terrors, about people coming in and waking her up in the middle of the night to check her vital signs.

I’m writing this from a hospital bed, as my appendix was just removed. So I can understand how the nighttime checks could scare someone so young. What just happened to me is nothing. Nothing, compared to what so many children go through. They live with IV needles and ports and constant pain. I don’t know if you’ve ever had to leave a needle in your vein for a long time, but it sucks. These children go through surgery and chemo, radiation and clinical trials. While we, as people who understand how horrible this disease is, fight for awareness, these kids, teenagers, and babies fight for their lives. In the US, 7 of them lose everyday. 46 are signed up to fight. Families are forced into this battle, for their kids. I cannot even imagine life without my little sister. Some of those siblings, whose brothers and sisters you refuse to represent, know what that life is like.

Maya Thompson’s older sons learned that at 8 years old. When his 1 year old sister got a black eye in a baby tumble, one of these boys asked his mom if baby Poppy was going to die. An 11 year old. Because he watched as cancer took his 3 year old brother. No child should ever have to fight cancer, no parent should ever have to lose a child to cancer, no sibling should ever have to watch this disease take their brother or sister. You don’t need to know someone closely. You just have to look around and realize how wrong these kids’ situation is. You just have to want to help them. To tell everyone, “pediatric cancer is wrongly underfunded, and we need awareness, so we can save these kids.”

Some people are pulled into this fight for their loved ones,and to make sure it never happens to someone else’s, but I fight for all of them. For Ronan and Lilly, Paxton and Mateo, Ellie and Alyna. I want you to light up gold, so in the future, Babies like Alyna, toddlers like Ro, and teens like Talia won’t die. So Lilly and Kaitlin and so many others can stay in remission. And Mateo and Ellie and every other kid facing cancer can win. Childhood cance is wrong. You don’t have to experience that to know it’s true.

 

Please light up gold,
Payton

Back in AZ with a Birthday to celebrate. Or not.

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Ronan.  We are back home and I am almost done with the whole holiday/celebrations of all things that still feel weird without you. My birthday is Saturday and I promise you I am trying to have a super good attitude about it, but I don’t really feel much like celebrating.  This does not fly with your daddy as all he wants to do is make sure my day is overly the top special.  What is the nicest way to tell him that over the top special to me would be hiding in bed all day, under the covers?  I can’t do that though.  It would break your brothers hearts so I will suck it up and do what is best for them.  I will smile when I blow out my candles and make the same wish I do, every year. The one where I just hope so much that you are alright, safe, and hope that someday, I will see you again.  I will smile for the picture that I know will be taken and I will forever wonder how in the world I can look so happy, in a picture when I feel like I am still so broken, sad and shattered.  It truly is amazing the things we as adults can do to survive such horrific pain.

Washington was all things perfect. Well, almost;) I basically go there and hibernate for the winter.  I feel like I did a lot of sleeping, which I never do well here.  Every night was the same as I would crawl into bed with Poppy and pass out until she woke me up.  Quinn and Liam have their own bedroom there, but they prefer to sleep in my room with me every night in another bed that is in the room.  It’s like a big slumber party and is one of the things in life I love so much.  Every morning when Poppy would wake up and I didn’t want to, Liam would grab her and say, “Mom, do you want me to take her downstairs and play with her so you can sleep a little longer?” Best brother ever and I happily thanked him and told him what a great big brother he was as I snuggled up to Quinn to sleep for another hour or so.  I don’t know if it’s the fresh air, cold weather, or just the comfort of being at home that knocks me out, but it always seems to do so.  I also spent a lot of time running which felt so nice.  I finally feel like I have my running mojo back and it always seems to come back when I am there.  I have a marathon to run in a couple of weeks so I made myself be pretty disciplined with my fake marathon training.  I was pretty consistent with running my standard 3.5 miles just about every night.  I somehow talked Brianna into running this thing with me.  Must be the older sister influence;) She ran with me at home and we even did 7 miles one night which was surprisingly pretty easy.  Her little 19-year-old body will be just fine.

Back in Arizona is hard for me, I’m not going to lie.  The first night we got home I felt like I was sucker punched as I walked through the door to our house without you bouncing behind me.  I handed Poppy to your daddy as he hadn’t seen her in a few days, told him I was exhausted and asked him to please take care of her so I could go to sleep.  I knew the sleep wouldn’t come as all the voices in my head were screaming so loudly.  I haven’t touched anything to sleep in over a year, but that night I needed to just pass out into oblivion for a solid 6 hours so I did.  Oh, how I sometimes miss the days of complete darkness with my old friend, Ambien when the world just quietly slip away.  I had to give up my love for that shit a long time ago due to loving it a little too much, but I think once a year is an o.k. compromise.  Sometimes I just need a night of blackness.  I had warned your daddy, so he was on Poppy duty and was happy to do so as he had missed her so much.

Speaking of Poppy, Ronan. Uhhhh…. remember when I asked you to make her “extra spicy?”  It is too late to give just a bit of that spice back???  What in the world happened to my sweet, cuddly baby girl who just cooed and started sweetly into my eyes all day long?! Now my days are filled with this very wild, strong-willed girl who reminds me of a little boy I once knew so very much.  She has turned into such a little spit fire who is on the go all the time and is constantly babbling, screaming (in a good way) and is into everything.  To say she keeps me on my toes is an understatement as I am chasing her around all day and she is only crawling. Imagine what she is going to be like once she starts to walk!  You know I am loving every second of it and so are your daddy and brothers.  She is full on obsessed with your daddy, too.  In a way that I really don’t remember any of you boys being.  If we are in a room together with her, she wants your daddy over me.  I secretly love it as it is amazing to see the bond between a father and a daughter.  It’s all so new to us all but so beyond sweet.  Your daddy is in total heaven about it.

Alright little man, this is all the update I can do for tonight.  Back to writing this book I go.  I miss you.  I love you.  I hope you are safe.

xx

Did I mention I’m running another marathon without training?!?! Here is my shameless plug.

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https://fundly.com/run-for-ronan

https://www.facebook.com/theronanthompsonfoundation

This time last week, we posted a thank you for sharing Ronan’s story and getting over 40,000 followers for our page. We asked if people would consider donating to our current campaign, the Rock N Roll marathon challenge. You guys came through for us, donating over $1,000.

But we still have a long way to go in order to get to $100,000. And we only have a short time in which to reach that goal.

Today we are asking for people to sponsor Maya. Yes, that zany girl is doing another marathon with NO TRAINING! She says if Ronan and these kids can go through horrific cancer treatments, she can certainly run a marathon without training. And if she can run 26.2 miles with no training (not long after giving birth, no less)…I think we should sponsor her and get her to her personal fundraising goal of $10,000!

We are not asking anyone to give who isn’t able to. We are only asking that you consider doing what you can. If you can skip a couple Starbucks and donate $10, we love you. If you’re independently wealthy and can sponsor $10,000 without blinking…we love you AND we’re a little jealous.

To sponsor Maya directly, please donate to her fundraising page:
https://fundly.com/m2/run-for-ronan

Unfortunately the minimum donation is $10 and we could not get it lowered. But if you think “only” $10 won’t do anything, please reconsider! If only 25% of our followers here gave $10, that would fund our entire $100,000 campaign. We need you to help us raise this money for desperately necessary research toward pediatric cancer. We are so thankful for all of you and we know that once again, you will come through for us.

Perks! Everyone loves perks!
Anyone sponsoring Maya will get their name on a special page on our site highlighting Maya’s sponsorship team!

A randomly chosen person who makes a sponsorship pledge for Maya today will also get a video thanks from her and a special thank you gift.

I want the house with the tire swing…

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Ronan. Somehow, life is still just going on without you. I’m not so sure how this just continues to happen, but it does. Right now, I am listening to the chitter chatter of your daddy and brothers as they root for the Raiders football team while watching the game in the other room. Poppy is sound asleep beside me and I just spent the entire day lost in her little coo’s and giggles. I catch myself a lot, stopping dead in my tracks after feeling myself feel the happiness she brings to my life. Happiness that exists without you here, but trust me, its not guilt free or the kind of happiness I used to have back when your little feet would go pitter patter across the floor. This happiness comes with a very heavy price that never goes away. This happiness, feels heavy as the absence of you is never far from my mind, heart, body, or soul. This happiness is heavy.

Your daddy just took your brothers to play basketball except Quinn who came in to tell me goodbye, decided not to go because he saw the tears rolling down my cheeks. The tears of this is all sometimes too much, the tears of all the other kids that I know who are going through this, the tears of the parent’s like us, who are left with a dead child due to this world that is a fucking crap shoot if you survive because it really is all just a game of Russian roulette. And when you lose, you lose big time. There are no do overs or second chances no matter how loudly you scream and cry and call out your dead child’s name at the top of a mountain because you think if you scream it loudly enough, he will come home. Not home as in fucking heaven, but home as in back into your arms, where your child belongs. Where you belong with me and should have been with me until I was the one old and dying, not you, young and dying while I watched you take your last breaths.

Every single day I take your brothers to school, I drive past the cutest little house with the most perfect little tire swing in the front yard. I crank my neck as far as it will go, to try to get a peek into this little world of the tire swing house. Sometimes, I see the mom coming out of it, pushing her other kids in the stroller. I think to myself, remember when I had the tire swing life. The memories of bliss come flooding in but are usually followed by hot tears as what once was, but never will be again. It takes me a minute to regroup and give myself the little pep that I often have to do. The one of you have x, y, and z and you need to be thankful for that which is such a bullshit pep talk. I know I have x, y, and z, but it does not make this pain, any less or any of this right.

Last week, I was taking your brothers to school and we were running late so I just dropped them at the cross walk. As I was slowly trying to navigate my way through traffic, a lady who was passing me motioned for me to roll down my window. I had never seen her before and just as I rolled my window down I heard her yell, “YOU GO GIRL! YOU KEEP FIGHTING CANCER!” This caught me off guard as well as made me laugh. You see, it’s moments like this when I am so caught up in my “I’m just a grieving mom role” when those little pushes and words of encouragement help me out the most. Sometimes I forget what I am actually doing because all I know is I’m just really, really sad and lost without you. But things like this help me to see that I must be doing something right for this stranger off the street to yell these words to me. I think I’m going to have a tee-shirt made up that say those exact same words, just to remind me that I am kicking ass and taking names and I can do this no matter how sad I might be.

This Friday night is our second annual Gold Party. Your Nana is coming into town as well as Macy, Rachel, Charisma, and your Fairy RoMo. It’s going to be such a wonderful weekend full of all of my favorite people. I am going to do my best to make it such a wonderful, sparkly night all for the sake of you. It’s always in my head that this party is for you, and for all the people who love and support this cause. This party is my way of saying thank you to all the people out there, who love you and are supporting all that we are trying to do. Although the reason for this party is sad and so beyond fucked up and wrong, I promise you that I will wear the biggest smile on my face for the night and hope that you are watching all that I am doing to try to make you proud. I love you so much little man and I will never stop screaming or crying for you. I promise to always try my hardest to make the wrongest things, somewhat right.

Alright little man, this is all I can do for tonight. I have been wiped out lately and my pillow is calling my name, even at this early hour. I miss you. I love you. I hope you are safe.

xoxo

A mushy messy update because too much has been going on.

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Ronan. At the moment, I am feeling defeated. And really lost, lonely, used, and sad. I look around in the world and all I see are these fake plastic smiles. People who pretend they care, but they don’t. People who say they do, but they don’t. And just when I am coming up to get some air, I get the most devastating news delivered to me, since your death. I don’t think this is my news to share as it hit a little too close to home. I don’t think I need permission to share what it is that is going on, but I’m not feeling right about sharing it on here at the moment. I need to talk to the people in my life that I am closest to about how to handle all of this since this is my very open and honest blog, and when I talk on here it is about what is impacting my life at this very moment. I’m just not quite sure how to handle this. At this point, I am beyond heartbroken, scared, and sad. My family has been through so much. We don’t need anymore pain, but we cannot seem to escape it. I’m just so tired of it all. I’m just so tired of being sad, mostly. I’m learning to rely on my old friends more and seem to be wanting to keep them as close as I possibly can. The ones who I can trust and the ones who won’t let me down. The ones who are my family.

Just when I think my days cannot get any worse as I am trying to absorb the news that I have been hit with, your baby sister looks at me and rolls over for the first time. She feels me with hope, happiness, and a light that nobody can destroy because no matter what happens, she is mine and I am hers. I look at her, take a deep breath, and watch her little eyes fill up with a love that I have not seen in such a very long time. Eyes full of innocence, light and love that know no pain. Her eyes remind me so much of yours. I spent the weekend in a fog but a productive fog like always. Basketball games, time with your brothers, family things. I was out and about with Poppy, running errands in the retched heat. A lady came up to me in a parking lot, telling me her sad story and asking if I would buy her food. She was telling me how hungry she was, how she had lost her house, her life, her everything. I loaded Poppy in the car, grabbed some cash out of my wallet and handed it to her, but I couldn’t even speak. She then said to me, “Bless you child, bless you.” I looked up at her, my eyes filled with tears and I wanted to scream, “But NOBODY is blessing me! My son is dead, and now I am dealing with x,y, and z!” I screamed those words over and over in my head instead of out loud while I drove away into the hot bursting sun that looked like it was going to explode.

This is the part where I say, I know I am blessed to have the things that I have Ronan such as your brothers and sister, of course. I never forget that. But, I think I am entitled on some days to scream that I am in fact not blessed at all because I’m still just so mad, sad, angry and hurt over your cancer, all you went through and that you ended up dying anyway. Some days I am not blessed because I am still too blinded by the never-ending torture cancer killed my baby and I just want you back. And just when I am feeling like all hope is lost, something amazing appears out of the blue, only to be sent by you.

So, I started this post a little over a week ago. I have decided not to go into much detail as to what is going on, as I want to be respectful to my family. Nobody is hurt as of now. My brother is struggling with some issues, but thanks to my mom and her never-ending dying love for her children, he is safe for now. It’s no secret that my brother and I have not had the closest relationship, but at the end of the day, I love him and his sweet soul. I am begging you, Ronan, to help him get through this. I spoke to my brother on the phone a couple of days ago. I begged my mom to make him talk to me. He was resisting. She held the phone up to his ear and I just simply said, “Hey. I love you. I am here for you no matter what.” He told me through is his tears that he knew this and he loved me, too. I then said, “I am proud of you and I know you can do this.” I hope he carries those words with him and all that is he about to go through. I hope most of all, Ronan, he carries you with him and remembers your big blue eyes and how strong and brave you always were. I hope he can channel a little of your strength so he can come out of this healed and ready to start his new life that I know he is so capable of. I am so thankful for my mom for so many reasons, but today I am thankful for her because she single handily has saved my brother’s life. It’s up to him now to do the rest and I just hope and pray that he comes out the other side of this, Ronan. I know you will help him through this the best you can.

So, after my pity party week of feeling super sad, lost and alone, of course something magical appears as it always does when I need it the most. Remember how I told you that amazing company SpiritHoods jumped on board when I asked them to make a Spicy Monkey Hood in honor of you? WOW. I had no idea what this was going to turn into, but Ronan, I think we just did something big. Something so very big that is going to help change this world of childhood cancer that everybody seems to just ignore. I got a very last-minute email from the founder of the company, Alexander. It said something like, “Hey, I’m in Vegas next week, can I come from there to meet you?” You know my rule about never saying no to things, right? I try not to anymore. Ever. So of course I said yes even with everything that I have going on. Plans were made, and as always, I was not sure what to expect, so I just hoped for the best.

Do you know those moments in life when for a spit second, everything just feels right? That’s what if felt like for me the second I finally got to wrap my arms around Alexander and his stunningly gorgeous wife, Shay. Alexander is the founder of SpirtHoods and Shay is his wife, side kick and partner in everything. The two of them, combined, are beyond magic. We spent some time getting to know one another, but honestly I knew from the second I met them, that I have somehow, somewhere, known them before. Or maybe you knew them, Ronan which is why I felt so close and so at ease with them. I’ve been holding some things back in regards to your death and saving them for just the right people, the right moment, and the right time to do something really amazing and powerful with. I have no doubt in my mind, Alexander and Shay are just the right people to share our everything with.

The Spicy Monkey SpiritHood that was only just a dream of mine, is coming true. With 100% of the proceeds, going back to your Foundation. I am so thankful and humbled to be partnered up with this amazing organization. But the SpirtHood is only the beginning. After we got to talking, an idea came about because Alexander believed we could really take this story, to the next level. So, we made a short film. And a long documentary, as well. One full of days and nights of real footage, B-roll footage, interviews from our dearest souls, not a lot of sleep, lots of tears, sadness, laughter, honesty, love, and what day is it today?! Ronan, it is going to be so powerful. I held NOTHING back with all the sadness, truth and pain that the world of childhood cancer is really about, but nobody wants to show.

Little man. I will finish this post and this story, but not tonight. I started this over a week ago but between all that has been going on, I have not had the time to finish. Book writing is #1 priority right now, after your sister and brothers, of course.

Poppy and I took the red-eye out to NYC a couple of days ago. We needed a break before September, so to the Hamptons we went to see our Fairy RoMo. I so needed this break. I so needed to clear my head. I so needed to spend some time with one of our favorites and your Poppy sister’s Godmama. It’s lovely here. Beyond words.

I need to get some sleep. Everything is fuzzy and hurts. I’ll finish the rest of this, tomorrow I hope. Just wanted to give you some sort of an update.

I miss you. I love you. I hope you are safe.

xoxo

 

I never fall asleep without thinking of you all

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I just want to take a minute on here and say thank you to all of you. After being away for the summer, I came home to piles and piles of mail, gifts for Poppy, checks for the foundation, and I even got glitter bombed after opening up a box. You all make me smile, laugh, and cry on a daily basis and although I can’t write each and every one of you thank you’s… please know that I am doing it here, and I say thank you to you all about 100 times a day in my head.

There are so many amazing things going on. If you have a second, please read about what the amazing Jim Fry is doing below.

http://www.firstgiving.com/fundraiser/jimfry/hauteroute

If you have the means, please donate to his fundraiser. Every little cent helps. If you don’t have the means, please spread the word for us. What Jim is doing is inspiring and so moving. Even with all of his determination, he knows it is nothing compared to what these kids go through and that is the most moving thing of all.

I feel a movement happening in the world. One that I am so touched by. I’ve literally received thousands and thousands of emails and letters from not only adults everywhere, but kids as well. Kids who I swear are going to change this world of pediatric cancer. They are holding fundraisers for Ronan, starting clubs at their schools, writing reports about the lack of awareness out there, doing amazing school projects about Ronan’s foundation, writing songs for him, doing their birthday parties and instead of gifts they are asking for donations instead, etc…. I live for the youth of America. I live for these kids who are going to grow up to do amazing things all because of a little boy they learned about because he will never get the chance.  And they know that is so wrong and how it could happen to anyone; even them. They aren’t scared and running the other way. They are being proactive about this very broken world and to me, the mother of a child who died from this… that means everything.

I got sent a little poem from a 13-year-old girl named Eugenia. She had a class assignment and it was to describe a room and explain how the objects in the room say things about the person living in it. She chose to do it about my bedroom. The poem is below.

The light on at night illuminates how she doesn’t sleep well thinking about how she feels it’s her fault

The athletic shoes next to the door jog the idea that she runs to clear her mind

The pictures of her son all over the room visualize how they were close and that she misses him like crazy

His little bald head in the photos discloses that his life was a hard one even though it was short

His toys on the floor play out his innocence; how he was taken too young at 3 years old

The boxes of tissues whisper about how she spends every day crying over him

The spot on her bed between her and her husband portrays that he would sleep in their bed

The urn on her night stand murmurs that they keep him close and never let him go

The necklace around her neck filled with some of his ashes witnesses how she needs to keep him close to survive

The letters of apologies opened and unopened spell out how many loved ones he had

The bracelets with his name on them tie up the fact that they are trying to spread the word of this horrible disease

The computer on the floor next to the bed reminds us how she needs her blog to express her emotions of grief and pain and tell his story 

The sonogram under the pillow wet with tears of joy and despair portraits how her new baby will be a girl; he always said he wanted a little sister

The deep sad look in her eyes sends the message to us that even on the happiest of days she will always be sad because her life is incomplete without him.

 For Maya and Ro. Always for Ro.

 

 

This 13-year-old gets me better than most adults. As I read the words above, the tears just poured to the floor. I thought it was so heartfelt and beautiful. I am so moved by this younger generation of kids and the way they are helping move these mountains. Thank you, E. Don’t let anyone every dull your sparkle;) You are making this world a better place.

I’ve got to run now and work on this book.

I hope you all are well and please know that I know, that I would not be where I am today, without you. Thank you for helping me to fight for my little boy so much so that his name will never get lost.

xx

 

Secret Dimples and Butterflies

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Ronan. You know what got me through today? That little secret dimple you gave Poppy. The exact same one you had hidden on your little right lower cheek. The one that only came out when you smile or pouted.

The picture below is you at around a year. This was Poppy yesterday. That secret little dimple is such a gift that every time I see it, I get butterflies in my stomach. You are beyond amazing for doing this and this is absolute proof that you played such a huge role in all things Poppy.

Thank you, Ro.

xoxo

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Instagram is where it’s at

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I know you all worry when I go radio silent for a while. The best way to keep up with me when I’m not writing on this blog is via Instagram. I’m pretty much obsessed and think it is the best social media invention ever. Poppy and I just posted our first video. No carrots for Poppy. Sorry, Pops.

So, follow me if you want to keep up with me and this insane life I live without my Robaby, while trying everyday to make sure he is a part of everything I do.

Love you, Ronan. Miss you so much.

 

http://instagram.com/mamamaya

For those of you who want to sponsor me…

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THANK YOU! I’ve gotten so many emails from people saying they can’t run, but would love to sponsor me. What do I say to that?!?! HECK YES! And thank you times a million! You all are such wonderful, beautiful souls.

I know Ronan is so proud of all we are doing. The link to sponsor me is down below. Nothing can stop me from running for Ro. Not even these E size milk filled boobs.

xoxo

http://www.firstgiving.com/fundraiser/rockandro/runlikearockstar

  • Instagram is my BFF

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