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

Wait… Poppy is one? How did that happen already??

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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

 

 

Thank you for her.  She is such a gift to us all.  Happy 1st Birthday, Poppy Roo. We love you, Ronan.

Thank you for her. She is such a gift to us all. Happy 1st Birthday, Poppy Roo. We love you, Ronan.

 

 

“Hey guys, do you want me to move back in with you?”

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Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that.  About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.

It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things  you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.

We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.

On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.

“Hey, do you guys want me to move back in with you?! That would be so fun!”

They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.

“I really would. You guys are really awesome roommates.”

I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.

Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.

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

xoxo

26 months without you

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Ronan. Today being 26 months without you, made me want to hide in my bed all day long. Your baby sister woke me up this morning at exactly 3:23 a.m., just minutes before you died, to eat. How does she already know everything at just 12 weeks old? How did she know at that moment, I needed a reminder that even though you are gone, you are still with us at all times? She is already so wise beyond her years.

I wanted to hide in bed all day and do nothing but sleep, sleep, sleep. I didn’t. I played with your brothers, instead. I went for a hike with your Papa Jim, your brothers, Poppy and Jady girl. I decorated some trees with your bracelets like I always do when I am hiking or out and about at places I know you would love to be with us.

I’m sorry I haven’t been writing to you on this blog. It makes me so sad that I have so much going on, that it seems to take away time from my quiet time, writing to you. Days are filled with me making sure your brothers are enjoying their summer as much as possible and bonding with your Poppy sister by making her smile and laugh as much as I can. The quiet time I have to myself which is really late at night after everyone is asleep has been spent working on this book. I have been having a war inside my head with myself about it. I swear I am my own worst enemy. I’m constantly doing the second guessing, the what if it’s not good enough, what if I don’t make him proud. A wise little editors words haunt my  head… “Remember, besides having kids, this is going to be the most permanent thing you do in life.” No pressure at all. The hardest part has been figuring out where to start, but I did it. It’s kind of like jumping off of a cliff. Sometimes you just have to close your eyes, follow your heart and take a huge leap of faith. I seem to be finding my words easily and so far, I have not had to go back to reference my blog at all. I’m sure there will come a point when I have to do that, but for now I seem to be doing just fine without having to reread my painful words. I know the inspiration I am finding all comes from you, so thank you once again, little man.

I’m going to keep this short and sweet tonight as I need to get some writing done for a few hours before my eyes fall too heavy to see the computer screen. I hate 26 months without you. I’m so sorry. I miss you so much that it makes me sick. I am doing my best even though I still have days where I just want to close my eyes and go to sleep for a very long time. I can’t do that to you though. We have too many things to get done here.

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

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

2 years makes me want to rip my hair out while screaming for you like the wild animal that I am

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Ronan. I’ve started to write a few times, but I’ve erased everything over and over again. I don’t know how to put into words what this day feels like; almost 2 years without you. Your Poppy sister has been a great distraction. So much so that I find myself missing my grief and my pain. So much so that I feel like I am betraying you by not feeling the intensity of my grief as much as I used to because your Poppy sister makes me feel that peaceful. I knew the 9th was coming, but it’s like I’ve had my head buried in the sand because I’ve been trying my best to hide from it. There is no hiding from this day. It will come no matter how much I beg and I plead for it not to. Everybody that knows us, knows what this day brings and those who have forgotten, well what can I say?? Life goes on for them, right? Of course it does. Or as the French say, “C’est la via. Those closest to our hearts are here with us on the day of hell in one way or another. Those closet to our hearts, know how hard this day is for us and are kind enough to acknowledge it. It means so much to me that they do. And those beautiful strangers, Ro. Wow. Oh so beautiful indeed. You would not believe the outpouring amounts of cards, emails, tweets, texts, Facebook messages, etc… that I am receiving. With each and every single one, the tears fall down my face. Love and tears, love and tears, so much love and tears, Ronan. So many beautiful souls are being guided and changed, all for the better. All because of you, the most beautiful little boy to ever walk the planet. Bittersweet beauty I call it. So very bittersweet which you know is the theme of this life I’m now left behind in.

Yesterday was when it really hit me that your 2 year death day was approaching. I went to see your Sparkly before we left town. We sat and I think I looked like a deer in headlights for much of our time together. So much so that at one point I had forgotten for a split second that it was the month of May as I refered to something that was supposed to be happening, to happening in April.

“Sweetheart, it’s May. If that was supposed to happen in April, you need to check up on that,” he said to me while my eyes filled with tears.

Even though I knew it was May, for a split second it slipped my mind because that’s how much I did not want this month, to happen. Seems silly right? I mean, no matter what month it is, you are dead. Nothing can change that or bring you back, even if we could fast forward through this month entirely.

I just looked at the floor. I then looked back up at him.

“2 years, 2 years, 2 years. How can that be already?”

He gave me some smart ass answer to try to make me laugh. I kicked his foot in protest and when he saw that his little wise crack was not going to work, he went into something more serious. Something about my pain and how my pain is never going to go away, but look at all the good I am choosing to do with this pain. How I could have done nothing or even worse, I could have let this pain ruin my life, but I chose the opposite. It was the best pep talk he could give me 2 days before your Deathiversary. We sat a little longer and stared at your sister while catching up on other life things. Right before I left he looked at me and said, “He is o.k. I promise you that.”
I said to him, “How do you know?” “You just have to trust me. I know,” he said. I did what I always do which is made him promise me again. He did. I know he believes this. I believe him, but it still does not take away any of my worry over you. I will forever worry about you, Ronan. I worry about you so much and I don’t think that will ever go away. I am your mother. I will worry about you for the rest of my life even though you are not here on this earth. It’s part of what makes me forever your mom.

We left town. Had to leave town as being in Phoenix tomorrow on the day you died is not anywhere I ever want to be on this horrific day. My idea of putting us all on a plane to Ireland didn’t happen due to not wanting to compromise your Poppy’s sisters non-existent immune system. We drove up to Sedona instead. We spent some time with Dr. JoRo. She bought you a “We miss Ronan,” cake. Please tell me what other therapist in the world would have done something as thoughtful as that, Ronan? I’ll bet you a big fat NO OTHER THERAPIST IN THE WORLD. She is truly amazing and I will forever tell you thank you for her. The world needs 10,000 more of her on the planet. We will spend tomorrow together as a family missing you so much. I will try my best not to reenact the end scene from, “Thelma and Louise,” where they drive off a cliff together. I think your Poppy sister is too young to be my sidekick for that adventure. We will go and throw some rocks over a cliff instead or do something a little more safe but totally dangerous too in a PG-13 kind of way. Please just help me get through the day, o.k.?

This is all I can write tonight. Did I even make sense? I haven’t slept much so sorry if my thoughts are not flowing very well. This was the best I could do tonight through a heavy heart and blood-shot eyes. I miss you so much.

G’nite baby doll. 3:25 a.m. when you took your last breaths will be here soon enough. I’ll be up of course, screaming and crying for you as silently as possible as not to wake up your daddy, brothers or sister. I miss you. I love you. I hope you are safe.

xoxo

P.S. I’ve also decided that tomorrow is National F U Cancer Day. It will never be the day you flew off to go be an angel or went home to where you belong. Fuck that shit. You belong here with me and anybody that says otherwise is a douchebag idiot. Tomorrow is an asshole of a day, thanks to that bigger asshole named cancer so there it is, May 9th National F U Cancer Day. Thanks for killing the love of my life and so many other innocent victims. I will be giving you my best middle finger tomorrow painted extra purple and sparkly just for you, Ro.

As your Mr. Sparky Eyes would say, FUC. I couldn’t agree more.

 

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“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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2 years ago today, I went to Hell

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Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.

Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.

Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.

I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.

Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.

Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.

Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams

xoxo

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I still love this list. How to Live like a ROckstar

 

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People have asked, what they can do, besides the obvious which is donate to Childhood Cancer, to help make a difference in this fight. If you want to donate to Ronan’s Foundation, even if it is just a dollar; please do so. I have almost 12 million hits on this blog. Can you imagine if every person that has read this, donated just one dollar? Or five? That could do so many amazing things in our efforts to support research for Childhood Cancer.

I’ve thought up a list. A very unconventional list, because it is not just about bringing awareness to Childhood Cancer. It is also about living a life that Ronan would be proud of. It is about living a life, that Ronan would have given anything for; to LIVE. It is about being the BEST version of yourself, that you can possibly be. This list will grow and I hope it only gets better. I’m still young. I still have A LOT to learn, mistakes to make, things to regret…. but as of now, this is my list. This is a list that has been inspired by losing the life of my son and trying to become a better human being, because of it. I hope someday, that I am able to live my life doing everything I have written below. This list, gives me hope, in my darkest hours.

1) Be thankful. For all that you have. No matter how much or how little. If you have kids, be thankful that they are healthy. Nothing else matters. If you don’t have kids, be thankful for your health or the health of the loved ones in your life. Just be THANKFUL. And know what it truly means.

2) If you’re not happy, change your life and become happy. Happiest people are the most beautiful. Become the happy person you want to be. Life is too short, not to be happy. Ronan almost lived 4 years on this earth. I’ve never in my life met a happier person then he was and look at everything he endured. Cancer never got in the way of his happiness, until the last week of his life when his life was no longer his to live. He was ROBBED of his happiness. You do not have to be; so stop complaining.

3) Volunteer. At a Homeless Shelter. At an Animal Hospital. At The Ronald McDonald House. Whatever you are passionate about. Just do something to make a difference. Volunteer at a hospital…. there are so many sick babies who need people to hold and love them. Get involved. DO SOMETHING. ANYTHING.

4) Donate BLOOD or PLATELETS. It’s not that hard. REGISTER to become a BONE MARROW DONER. You could help save someone’s life.

5) Scream about Childhood Cancer Awareness with me until people start to listen. Write to local companies, small companies, big companies, your favorite Celebrity, the Media, Congress, The President, The White House, anyone you can think of; until people start to listen. If there are enough of us screaming, they will have to at some point. The lack of awareness/funding is UNFUCKINGACCEPTABLE. Media is very powerful. We have to get them on our side.

6) Educate the people around you about how this can happen to anyone. If you want your child to get a Urine Test, ask for it. Knowledge is POWER. Learn the FACTS about Childhood Cancer, like it is your bible. Know what it is you are passionate about, and why. Educate people about this blog. Scream about Ronan’s story to anyone who will listen.

7) Rules were meant to be broken in life. Break down the doors. Don’t give up if you are told No. I don’t care if it is a hundred times. Nobody ever made history in this world, by playing by the rules. REBELS RULE. Embrace your Inner REBEL. Ronan would love this so freaking much.

8)  Question everything and follow your instincts. Listen to you heart as it is more powerful than your mind.

9) Take a Holiday, once a year and do something completely selfless. How amazing would it be if everyone stopped worrying about themselves, gifts, fancy clothes, on a Holiday and took the time to go to a local Hospital to drop off toys or gift cards to the parents who are struggling/sad/lonely/or depressed because their “Holiday,” now consists of living in a hospital, fighting for their child’s life. Take our self-indulgent Holidays and bring the smile to the face of a child or parent who could use it a thousand more times than you. Take your kids with you and tell them why you are doing this and why it is important.

10) Please stop to enjoy the music in life. By blasting the music you love, the loudest it will possibly go, while having an insane dance party with yourself or your kids. They will love you more for it.

11) Be inspired and inspire other people around you. Find your inspiration. Move mountains with it. Form an army. Join an army. Make something happen.

12) Get off your ass and exercise. It will change your life. It is saving mine. Run for Ronan, because he will never get the chance to run a marathon with me, like I often dreamed of. Swim for Ronan. Bike for Ronan. Walk for Ronan. Ski for Ronan. Do it for yourself and for all the other kids who will never be able to, because they are not among the living anymore. Be HEALTHY. Eat better. Stop freaking smoking. It’s insulting. Not to mention, just plain gross. YOU are better than that, otherwise, you would not continue to read this blog.

13) Get angry. But turn that anger into something positive. Do NOT start dealing with your anger by hitting the bottle, hurting others, or doing drugs. Let your anger fuel your fire, but in a positive way.

14) Pursue your dreams. If they don’t come true, at least you know you tried. Do not be afraid to fail. You should be more afraid of not trying and never knowing.

15) Continue to talk about Ronan, his story, his fight, his beauty, his life, his death…. Help me honor him by continuing to believe in him the way you do. Take my pain, of losing him, and continue on this adventure, with me. I am humbled and so thankful by all of you who continue to want to support and love Ronan. It makes me stronger. It makes me feel as if I can really change the face of Childhood Cancer because of the endless amount of love and support.

16) Love your family and friends. Cut the drama out of your life if anybody brings it to you. Stop apologizing, but apologize when necessary. Be true to yourself, your beliefs, your life.

17) Never settle. EVER.

18) LOVE with your whole heart, soul, mind and body. Make sure the people in your life, are worth it. If they are, give them everything you have.

19) Stop freaking out because your kid colored on the wall, with a black Sharpie, and then peed all over the carpet. Be glad you have a kid to create such a little creative piece of Art for you. Embrace their Inner Spiciness.

20) Teach your Children. Educate them on how lucky they are. Teach them to be kind to others. Don’t lie to them. Let them make mistakes. Guide them, push them, pull them, engage with them. Be present. Life is hard. Let them know this, without having to teach them the way that Liam and Quinn have had to learn.

Alright lovelies. This is my list for tonight. I’ll add more as I think of things. Don’t thank me for it. I had nothing to do with it. Thank Ronan. Kiss your babies. Love yourself for being so beautiful, that you want to be a part of the change.

I love you all. Ronan loves you all. I know he would be proud of this list.

The day we pretended like you were alive

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Ronan. Today, I got a phone call from your brothers’ school in the middle of the day. A phone call like that is never good. I picked up and listened as the school nurse informed me that Liam got hurt at recess and I needed to come and pick him up because he needed stitches. She was a little panicky which led me to hauling ass to the school as quickly as possible. Once I was there, I checked out the damage done and it didn’t seem too bad. She cleaned out his elbow and he actually did have a pretty deep football war wound. She told me she was pretty sure he was going to need stitches. I put Liam in the car and calmed him down. He was pretty freaked out about the stitches part, but was trying to act so brave as he hid his tears. I told him stitches may not be necessary and told him if they were, the doctors have some great numbing medicine that they would put on it so he wouldn’t feel a thing. I called our doctor’s office and I was informed that they wouldn’t do stitches on the elbow, so we should head down to PCH. Down to PCH we went for our little adventure of the day.

We got a room pretty quickly and the nurse in charge came in to check out Liam’s elbow. He started asking all sorts of questions like how did this happen, are you in pain, etc… All the basic questions that are necessary. I stayed out of the question answering part of this as I am aware that your brothers are big enough to speak for themselves but being the mother hen that I am, I always want to swoop in and answer for them anyway. I let Liam do the talking. After all the formal questions were out-of-the-way, next came the fun ones. “How old are you? What grade are you in? What’s your favorite football team?” Liam answered them all without skipping a beat. The next question came. “Do you have any sisters or brothers?” Oh god, I thought to myself. How is he going to answer this? “Yes. I have 2 brothers and a baby sister on the way.” I let out a sigh of relief. The next question came. “How old are your brothers?” Liam answered, “My twin brother is 9 like me and my little brother is 4.” I looked up at Liam as I wasn’t expecting him to answer like that. So nonchalantly, as if this were absolutely true and we were just another normal family where you didn’t die from cancer. “Wow! 3 big brothers! Your little sister is one lucky girl!” said the nurse with a big grin on his face. Liam then goes, “I know, ” as he shot me a big grin from across the room. I had been watching his face this entire time and gave him a big smile and a wink. He winked right back at me. Winking was something you used to do to me all the time. I remember how you mastered it while we were in New York and you were so proud to show it off whenever you could. This winking moment with Liam totally made my day. It reminded me so much of you. You were the best little winker. I swear we have been smiling ever since. I don’t know if this is right or wrong. All I know is it felt like a really beautiful moment that I wasn’t going to let pass me by. Today, I did not feel like swooping in and explaining our real truth while my voice quivered and tears ran down my cheeks. Today, I felt like smiling right back at your sweet brother and going along with our perfect little happy family story that at one time, was really ours.

Liam ended up not needing stitches. They were able to clean it out, gauze it up, and bandaged it up really well. It looks like a really good war wound. He was most concerned that he was going to have to sit out at his first baseball game that night. I told him we would see how he was feeling, but it might be a good idea to rest his arm. That’s what ended up happening. Your brothers had their first baseball game last night. I went and sat and watched. Our dear Kassie came with me. Your brothers were so excited that she was coming to watch. It was a great game and they ended up winning. I always find myself missing you during these times so much. I know your brothers do, too.

I had a Poppy check up yesterday. Everything looks good with her or according to Dr. Schwartz, “She looks perfect!” I said I knew, that all of my kids always looked perfect. It’s the after part does my new baby have cancer I’m worried about. We talked a bit about newborn screening. We talked a bit about the date which I would prefer for Poppy to make her entrance into the world. She knows how nervous I am and has been so good with me about doing whatever it is I need done to calm me down. She asked me if I would ever do this again… the have another baby part. I told her I didn’t think so, that mentally it has been really hard for me. Let’s just get Poppy here safe and sound. I can hardly wrap my brain around any of this, let alone thinking about another baby. Yikes. That seems like a lot. Dr. Schwartz told me she is measuring a week ahead of schedule in her height, but not in her weight which is a good thing. I’m sure she is going to be so tall and have those long legs of your daddy’s. We are slowly getting things ready around here. All of this still doesn’t really feel real to me. I know it’s going to take her actually having her here, for me to fully grasp all of this.

Alright little man. I need to run. I miss you. I love you. I hope you are safe.

xoxo

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