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.

 

 

The treadmill made me do it.

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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-

 

 

 

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

Introducing…

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http://www.littlesealtimes.com/front-page.html

The Little Seal Times! We get so busy around here, but are trying to do our best to keep you updated on foundation things.  We are getting ready to fund some really amazing things, thanks to ALL of you!!! Please check out our newsletter which will be updated monthly.

Thank you for your continued love and support!

xx

An amazing write up in Huffington Post and proof that so many good souls exist in this world.

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We have been privileged enough to be the subject of a beautiful, sensitive, and enlightening article over at The Huffington Post. Our friends David & Jessikah Warfle at “Rock For Ronan”, a musical project designed to help raise funds and awareness for RTF, were interviewed by Huff Post and as always, they made sure Ronan and the foundation got the center stage. Please check out this amazing article!

http://www.huffingtonpost.com/rainesford-alexandra/rock-for-ronan-couple-ins_b_4292828.html

Thank you all for your amazing hearts and spicy souls.

 

 

 

 

 

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Because of you all, the Spicy Monkey Spirit Hood was the company’s largest launch that they have ever had. Thank you all so much for buying them and making this venture so successful. Please continue to share this video with anyone and everyone. The more people who see it, the better. I love you all so much.

xx

 

 

http://vimeo.com/78844347

Dear Laura Leigh Lund,

 

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You asked for this, my childhood best friend. You asked me to give you some motivation to run the full Rock-n-Roll Marathon in Phoenix, this January for Ronan. You, of all people. My childhood best friend who looks like a supermodel, with your long, lanky 5’10 body and 0% body fat. You, my childhood best friend who once considered the high school required one-mile run, to be a death sentence. You, my childhood bestie, who has never in her life, considered herself a runner. You say you want to run a full marathon for the first time and in turn, I say to that… you are crazy. But you know how much I love crazy, so of course this is something I can fully get behind.

You see, it takes crazy person to do something like this. A half marathon is a victory in it’s own right, but a full marathon is a whole other ball game. A full marathon requires dropping every fear you have, and believing in yourself in a way that you never have before. There will be sore aches, blisters, toenails falling off, fatigue, cursing, screaming, crying, puking, (sometimes pissing and shitting yourself-serioulsy, I’ve seen it happen) and of course, wanting to just plain quit. I guarantee in the middle of all of this, you will hate me. But then you will remember why it is that you are doing this. You are doing this because you CAN, and Ronan cannot. You are doing this because you are alive and to truly be alive, we must do things that are outside of our comfort zone, otherwise, what is the point of life? You are doing this because you are so thankful that you are alive and healthy and your beautiful kiddos are as well. You are doing this for not only Ronan, but for all the other kids with the bald heads or who are in shallow graves/pieces of ashes. You are doing this for them, because while you are doing this, thousands of kids are sitting in hospital rooms, having chemo pumped into their tiny bodies, are hooked up to awful machines which means they have to stay inside all day when all they want is to breathe in the fresh air and play outside, but they can’t because they are sick and being robbed of their childhood. They are having body parts cut open, are too weak to open their eyes, are having radiation and transplants to try to save their lives, and you are not. You are healthy, here, and living a beautiful life that you are so thankful for.  And while you are doing this, I will be right by your side, running this with you. Fuck. Did I just say that? Yeah. I just said that. I’ll run this marathon with you, even with my bad knee that is trying to tell me my running days are over. You know what I say to that knee? Fuck that knee and fuck cancer for killing my baby, too. I’m in this with you. I don’t care if I have to crawl to the finish line. I am here, I am healthy, I am alive, and I can run another marathon. I’m not letting you do this, without me.

So, you start your training and I will not. I won’t train for this because I’m training everyday of my life anyway living here without Ronan. Let’s raise a ton of money, and run this thing, together. Deal? I hope so, because I’m not doing this without you. There is no one else I would rather have by my side (besides Ronan) than you. The mom of the little girl, that my son was supposed to marry. They would have been the cutest couple, ever. The mom of the little boy, who’s big blue eyes and extra “spiciness,” remind me so much of Ro. The mom who knew my baby, loved my baby, and is still here, fighting for my baby for no other reason than because at the end of the day, you know what truly matters in life and how wrong it is that Ronan will not be waiting for us at the end of that finish line. If you are doing this, I am doing this. Laverne and Shirley until the end of time. I love you so much.

Now, it’s time to find me some corporate sponsors to do my “10 days of fake training,” again. We have some kids to save and a center to build! Hey all you little blog readers! Email us if you know of anyone that wants to sponsor me! I’ll dress up all crazy like I did last time for the peeps that throw in the most money, we’ll post the pics, and promote the awesomeness of the good deed they are doing. Or come out and run with me! Or at least cheer for me on the sidelines and glitter bomb me! Let the games begin!

RTFSocialMedia@gmail.com

Ronan. Only for you would I do this again and again and again. Anything for you. Always.

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

xoxo

 

 

Dear First Lady, I just drank a shit-ton of water. Do you think it will bring back my son?

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Ronan. Is this a joke? I’m sitting at my computer, watching my Twitter feed go crazy about the White House being lit up Pink for October for Breast Cancer Awareness month, while they did nothing in September for our kids. Even after we got over 25k signatures for our petition to light the White House Gold, it didn’t seem to matter at all. What we got was a big fat slap in the face and some generic letter basically saying, “We care, but we really don’t care.” When I got our letter back, I was disappointed, but now sitting here at my computer and looking at the White House being pink, I am just straight pissed. I am not pissed that the White House is pink- good for them as this issue has been being worked on hard for a long time now by a lot of people with a lot of money/power/brains, etc…. What I am broken hearted over is the fact that WE (including all of you) worked our asses off to get over 25 thousand signatures to ask for the same thing for our kids, and we were ignored as if our kids, do not matter. Like my son, didn’t matter and doesn’t deserve the same awareness that breast cancer does. Every fucking person on the face of the planet knows what the pink ribbon means. Nobody knows what the Gold ribbon represents and this would have helped the cause of childhood cancer, so freaking much. This is not a one cause is more important than the other issue. This is I just want equal rights for these kids issue. Kids who are too little to have a voice of their own, so we as adults have to have it for them. I feel like we are screaming at the top of our lungs, but are constantly being ignored. This is what I am pissed about and please do not come on my blog and turn this into something else. I would have given up my life in a heartbeat if it would have meant Ronan would have gotten to stay here and live. I would have taken his cancer in an instant, no questions asked. I’ve had enough time here- he did not deserve to not be a child and live a full and wonderful life. I will always wish it could have been me and not him.

I don’t understand why this is even an issue, because it should be taken care of by now. How many more kids have to die? I don’t understand why everyone in the world, isn’t fighting the hardest for the lives of these kids. I don’t understand why such a simple thing, could not have been done. I don’t understand how everyday, kids are diagnosed, dying, going through wars that they shouldn’t have to go through, while being called “hero’s,” when all they want to do is have the chance to grow up, be  normal kids and live long and healthy lives, like they deserve. I don’t understand why kids are being robbed of this and nobody seems to care. Things could change if everyone would pull their heads out of their asses and stop sweeping this issue under the rug. I don’t ever want another mother or family to go through what we have gone through, but this is just going to continue to keep happening if the lack of awareness and lack of funds for childhood cancer, do not change.

While I was watching my Twitter feed blow up, I decided to go and spam the White House Twitter with “Where’s the GOLD for our kids,” etc.. etc… etc… Then I started browsing the First Lady’s Twitter, which is what got me to, “Is this a JOKE,” in the first place. Did you guys know that apparently there is an epidemic running rapid through the world about people not drinking enough water? OMG. I had no fucking idea how out of control and devastating this is. Have I been living in a hole somewhere? It is such a massive problem, that the First Lady has started a whole campaign about it. She says, “Drinking water is a choice that everyone can make.” She is totally right. You know what is not a choice? A 3-year-old getting cancer.

A 3-year-old, getting cancer and having his head cut open to remove a tumor that has spread to his left eye is not a choice. He also doesn’t get a choice regarding all the ADULT CHEMO he is going to have pumped through his body. Which causes nausea, bloody noises, fever, loss of appetite, mood swings, weight loss, fatigue, depression, and loss of hair to MAYBE save his life. And if that works, there is also another MAJOR surgery to have his stomach cut open to remove the mass that originated in his belly. If he gets through that, next is a stem cell transplant to go through, and YAY also radiation and antibodies! WHEW! But I sure am glad he never had to worry about that not drinking enough water problem! But he may have had to worry about it, had he lived long enough to do so. But he didn’t because cancer murdered him. He was robbed of his future as thousands of other kids are being as well. At least we, his family, are all left here to drink our water though. I will make sure that Liam and Quinn get an extra glass of water tomorrow, just for Ronan’s sake. They will drink an extra glass for him because he is not here to do so himself. Thanks for taking on this issue, First Lady.

Fucking bollox. I did not start this to bash the First Lady as I am sure she is lovely and she picked an issue that was easy for her to take on. But to a cancer mom, this is beyond offensive. Childhood cancer is a war and it cannot be won alone without the support of our government and leaders. The fact that childhood cancer only receives 4% of U.S. federal funding, gives me nightmares. As if having a dead son doesn’t give me enough nightmares, now I get to think about this while I’m awake during the day and also while I sleep. I guarantee you, if the President and First Lady actually stepped foot onto an Children’s Oncology Floor, this would not be acceptable to them. If every person was required to step foot in a hospital, on this floor, we would not be dealing with lack of anything in the childhood cancer world as I fully believe this real life epidemic, would be issue number one. Our future generation of great amazing leaders are dying. I know had Ronan been given the chance to grow up, he would have grown up to change this world for the better. Look at all he is doing and he is dead. If that doesn’t say something, I don’t know what does.

Below is the “We care, but don’t really care,” letter from the White House. Thanks for the awesome photo op though, Prez. I really enjoyed seeing how much you care.

Ronan. As always, I miss you so much. I miss you. I love you. I hope you are safe. If they won’t change this, we will. I promise you that.

Fighting Pediatric CancerBy Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public EngagementThank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.President Obama with Jack HoffmanPresident Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.

We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.

In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more atHealthCare.gov.

So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.

Tell us what you think about this response and We the People.

Presidential Proclamation: National Childhood Cancer Awareness Month, 2013

Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.

Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.

My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.

All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

Thank you, White House for basically telling me my son does not matter and he is just a dirty little secret that deceives to be swept under the rug. Put a face to THAT because he DOES MATTER!

Thank you, White House for basically telling me my son does not matter and he is just a dirty little secret that deserves  to be swept under the rug. Put a face to THAT because he DOES MATTER!

Poppy didn’t die and the SpiritHoods already SOLD OUT!!!!

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Ronan. This is seriously my life. Last night, I was cooking dinner and I had Poppy in the sink. Let me back up a bit. Every morning and every night, when Poppy eats her solid food, I put her naked in her Bumbo chair in the sink. She gets so messy, so I feed her in there as it makes perfect sense because she is SO messy and I can just wash her off afterwords. (Hi, that’s me OCD clean freak) She likes to sit in her little chair, play with her rattles, and suck on this mesh thing that I put avocados or bananas in. Last night, while I was cooking dinner, Poppy was playing away and sucking on her little mesh holder with her mashed up avocado in it. I turned around for about 30 seconds to tend to my tacos and when I turned back around, Poppy was slumped over in her little Bumbo seat with her head down. I dropped my spatula, screamed her name, and ran over and ripped her out of her chair. The water wasn’t on or anything, but my mind instantly went to, “She’s dead, she’s dead, she’s dead.” As soon as I ripped her out of that chair, she started to cry because I scared her so badly. She wasn’t dead. The poor little babe had fallen asleep, probably because she was so worn out from our very busy day of putting her in a pumpkin and taking pictures.

I felt so bad for scaring her and making her cry because I am a raging lunatic. I felt so badly, yet I know this is the way I will always be. My mind will always go to the worst place possible. I said to my friend, Katie today as we were hiking, “It takes everything I have not to take all 3 of my kids down to PCH to have them scanned from head to toe.” And I’m not kidding. It’s a fight I have with myself everyday in my head. Just because this has happened to us once, does not mean it cannot happen again. That’s not the way life works. I am fully aware of that. I live in a world where all of my kids are going to die and everything they touch or eat, is going to give them cancer. I’m so freaked out by anything that Poppy puts in her mouth, food wise. It was pretty much only organic for you and your brothers. I mean, I even made all of your baby food from scratch. Now, I’m positivly a freak about it with Poppy. And if you think I have issues there, you should see the way I pretty much refuse to leave her with anyone. I mean, I even worry when I leave her with your Daddy for a bit. The separation anxiety I am having with her might become a problem. I can’t leave her and when I do, I’m a ball of nerves. This is my life and as of now,  this is just the way it is. Maybe it will change or maybe it won’t. I don’t know how you ever go back to anything ever feeling o.k. and safe again after you’ve watched one of your children, die from cancer.

So, I started this earlier today… before the amazingness of the SpiritHoods Spicy Monkey SELLING OUT happened! Are you guys serious?! I mean, I expected them to sell, but not that fast! You all are amazing. Don’t worry, our friends at SpiritHoods will be making more. I don’t think anybody expected them to sell out so fast. THANK YOU ALL SO MUCH! This is beyond rad. Tonight, I can go to sleep feeling so proud because this is proof that my little guy is changing the world with the help of all of you. I really, really needed this today, so thank you all again for being so supportive. And another HUGE thank you to my brother from another mother, Alexander from SpiritHoods, who shot this video and has been working along my side through this whole thing. He is going to change this world with me and help save some kids’ lives, just you all wait and see. This is just a little taste as of what is to come.

I’m signing off for tonight. More book writing to do. I miss you. I love you. I hope you are safe, Ronan. I love you to the moon and back

xoxo

I love you all, too. Thank you for helping in this fight and for being better people because of my son.

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It’s almost Halloween and I would still let you be anything if you were still here

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Ronan. Last week, I got to see the magic that Alexander has put together with the SpiritHoods video. He’s been working like mad on it, and keeping me so very in the loop. When the link finally came through the short version, the one that will air on their website, I took a deep breath as I sat down to watch it. I put Poppy on my lap and she watched with me. The tears were almost immediate. It is 5 minutes of absolute perfection, absolute heartbreak, absolute beauty, and absolute truth. I am so proud and so thankful for people like Alexander who have come into our life. The moment I set eyes on him, I knew he was the perfect person for the job of telling our story in a documentary type of way. I felt so comfortable with him and an immediate connection. I wasn’t wrong. Not only does Alexander feel like a long lost brother to me, it turns out he is insanely talented and I could not be more proud of what it is we have done together. Oh, and he also happens to have a totally kick ass wife who I am equally as in love with. I cannot wait for you all to see this, and then to watch as you all buy up the SpiritHoods like crazy. They turned out so adorable and only Ronan being here to rock it, would make it even better than it already is. I AM SO PROUD.

Last week was an insane week and with foundation stuff pretty much happening around the clock, I knew I needed a small break. Or, more like your daddy knew and pretty much told Dr. Jo that I was coming up to Sedona on Sunday to spend some time with her and do a little eco therapy. I drove up with your Poppy sister in tow. We arrived late on Saturday night and woke up in the morning, ready for to go on a hike through the beauty of Sedona. On our hike, we got into my much needed therapy. We talked about where I am in my grief process and I told her all about my hard week last week where I spent many days, THINKING about doing things like driving off a cliff. I still have those thoughts, although they happen less often. Our little hike turned into a 5 hour massive hike with your Poppy sister on the front of me. We only stopped one time to feed her and let her stretch out. The rest of the time the only sounds we heard from her were the sounds of her coos and giggles. That baby, I tell ya. She is amazingly special. I’ve never known a baby that would go on a 5 hours hike and be happy as a clam the entire time. She is such a sweet, sweet girl. Most of the hike, we talked about this whole grief thing. I told her how I constantly feel like a bunny rabbit, digging a never ending hole, and trying to fill the hole with “stuff” when I know the hole is never going to be filled again. It’s that taste of happiness that I had with you that I so badly want again, but no matter how beautiful this life is, I’ll never get back the happiness that is missing; that being you. I have learned to love my grief, for even as painful as it is, it keeps me connected to you. So, when I am not spending enough time nurturing and sitting quietly with my grief, that is when I tend to get into a bit of trouble, emotionally speaking. Some people want to run away from their grief, but there is no out running this. Your grief will always catch up to you and never gets tired of chasing you. I don’t want to outrun this, but the fact of the matter is, it does become heavy to carry and sometimes hard to manage. That’s when I have to check in with myself and do things like a 5 hour hike with Dr. JoRo. Things like that, help me with all of this.

I have so much going on around here that I don’t even know which way is up anymore. After dropping your brothers off at school in the mornings, I have been making myself take your Poppy sister up our mountain. I know that in order to be productive during my day, I do need to take a little Mama/Ronan time out. This morning I had Poppy on my front and your backpack on my back like I do every time I hike. You know that little backpack from Pottery Barn Kids with your name embroidered on the back of it. As I was coming down, a man passed me. He said, “Is that your son’s name, Ronan?” I was caught a little off guard and but managed to nod my head and give him a smile. He said, “That’s my son’s name, too! He’s 7.” The only thing I could say was, “It’s a great name.” What I really wanted to say is, “You are so lucky to have a 7-year-old Ronan.” I hiked the rest of the way down, feeling sad and trying to imagine what it must be like to have a 7-year-old Ronan, too. That pretty much threw me off for the rest of the day, but somehow I still managed to be productive around here.

Halloween is approaching. Is it really another Halloween without you? I would still let you be anything, if you were still here. Your brothers are all excited and I took them “Booing” the other night with some of their friends. It hurt to be doing such fun/funny things without you. Poppy seems pretty excited about Halloween, too. Today, she asked me to take a pumpkin, carve out the top and some slots for her legs so I could stick her in the pumpkin and take a picture. O.k… so maybe she  didn’t ask me, but that’s totally what I did to her. She loved it for about 30 seconds, then when she realized she was naked in a pumpkin, she got pretty mad at me. I took her out once she started to protest, but I did manage to get some great pictures out of the Poppy the Pumpkin photo session. It was kind of the cutest thing ever.

Alright little man. I have to sign off for the night. Time for my late night book writing session to begin. I miss you. I love you. I hope you are safe.

xoxo

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  • Instagram is my BFF

    Lorde with my little royal. @quinnthompson24 #ronan #fucancer #lorde #imthecoolestmomever #hessocute Miss you already, lover. #poppy #ronan #fucancer #rideordie #mommynumbertwo @macymwood Dedicated to my @macymwood. Ride or die for life. #ronan #fucancer #iwillloveyoutilltheendoftime #lanadelrey #iwouldmakeoutwithlana Hipsters. #ronan #fucancer #middleagedhipsters #youngforever #forgotourflowerheadbands #lanadelrae Been trying hard not to get into trouble... #ronan #fucancer #lanadelrae #mymusicalsoulmate @macymwood This is my happy place. #poppy #ronan #fucancer #hidingfromtheworld #sundaysnuggles @macymwood @knjoy Sundays are for sleep. @macymwood @knjoy #poppy #ronan #fucancer #sleepingbeauty #wornoutfromsomuchdancing Just making out with my favorite homegirl. #poppy #ronan #youdownwithopp? #yeahyouknowme #homegirllove #fucancer Poppy's other mom is in da house! #poppy #ronan #fucancer #mytwomoms #thesebitchesarecrazy @macymwood A bunch of little ballers and a P-Ro, too. #poppy #ronan #fucancer #basketballislife #arcadiatitans This has secretly been being worked on for quite some time. As you can imagine, it was a very emotional thing. We as board members/friends at RTF decided it was time for the little seal logo to go. We needed something that really spoke to who Ronan was/is. This is what our amazing friends at Fervor Creative came up with after many meetings with us and many do overs. (pro bono might I add because they have such beautiful hearts) I think they nailed it this time as it shows the beauty, strength and bravery that Ronan had, in such a simple way. How no matter what, you always keep walking up that hill and fighting, and even in death, you wont stop fighting for a world that so badly needs to be fixed which is the world of childhood cancer. Looking at this makes me proud, it makes me cry, it makes me strong. After everything Ronan went through, he always held his little chin up with such dignity and pride. At 3 years old, he was such a little man who never felt sorry for himself or let what he was going through get him down. He was my greatest teacher in life and will continue to be as I carry him with me in everything I do. I love you, Ronan. I will never stop fighting for you and this fucked up world of childhood cancer that everybody just seems to ignore. We will change this, because of you. I hope you all like our new Ronan Thompson Foundation design. @ronanfoundation #ronan My favorite place to be on a Friday night. #poppy #ronan #fucancer #fridaynightsnuggles #mybabe
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