That time I went Inferno hiking and almost didn’t make it down the mountain, because sometimes I’m an idiot who does stupid things.

7caab45ae7493013e214e3ddb5154573

Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.

Hiking Camelback on a normal temperature day is not an easy feat.  Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell.  I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on.  I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly.  Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me.  I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb.  I had to stop quite a few times which I normally don’t do.  After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top.  I’ve never not made it to the top, so this was a first and I was not happy about it.  But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff.  I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me.  You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place.  I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly.  I started to get really disoriented and dizzy from the heat.  I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out.  I got to the part where you have to hold onto some rails to climb back down.  I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore.  I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell.  Did I want to die?  I was so out of it at that point that I couldn’t really answer my own question.  I let my mind drift and wander to those morbid places for a couple different reasons.  One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places.  I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much.  I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.

I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom.  He offered to come and get me and of course I said no.  Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on.  I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor.  I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes.  For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity.  Do you think I learned my lesson and will never do that again? You know me better than that, Ronan.  You know I’ll be back up that mountain in no time to do it all over again.  I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.

A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain.  I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail.  I googled the story and found it almost immediately.  He was 23, from Washington State and his dad was pleading for his son’s life.  I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts.  Could that have been him?  In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain.  My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief.  My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found.  It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days.  On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid.  It had been 3 days and I knew if he was up there and found, that it was not going to be good.  Still, I asked whoever is in fucking control of this life, for a miracle.  Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress.  My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about.  Please let him be alive.  Please, please, please.  I came home and checked the internet for the news.  A few hours later the updated story was posted.  A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday.  The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock.  The numbness.  The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too.  It’s been over a week and I can’t stop thinking of this kid and what happened.  I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.

I talked to some of the regular hikers after it happened.  Eric’s body was found about 500 feet below the summit.  They showed me where he was found as I wiped the tears away from my face.  The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented.  The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be.  And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die.  Sometimes I just want a break from all of this pain though.  I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.

Your brothers turned 11 yesterday, Ronan.  I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do.  I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you.  They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means.  You were missed yesterday so very much.

I’m going to run now.  It’s 4 in the morning here and I’m back to keeping the hours of a vampire.  Up most of the night and functioning on just a few hours of sleep.  It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left.  Dr. Sholler is actually going to be at our house in about an hour.  She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot.  No way I would ever take that precious cargo to the inferno.  She has too many kiddos to save.

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

Bye, little man.

xoxo

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

c2cb6641129278b1e1c0d733e3db7d37

 

 
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.

tumblr_mx3o6k4DL11qz8rpeo1_500

 

 

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.

Image

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…

tumblr_mwe4nozlVV1qkp87go1_500

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.

79be342beb16f70b82b3c8ef48cdd36a-1

 

 

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.

 

 

 

 

 

tumblr_mvrp05jTwg1qgolfvo1_500

 

 

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,

 

tumblr_mvx98i2Qq61rvy8aqo1_500

 

 

 

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?

tumblr_mv7kou8iz71qzmsgoo1_500

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!!!!

tumblr_mv09bgHSCb1qd6lqxo1_500

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.

image

  • Instagram is my BFF

    Poppy Thompson lives here. #poppy #ronan #meow #hellokitty #fucancer #kittyobsessed  #mamaslittlehelper Car wash babe. #poppy #ronan #poppyrooiloveyou #legsfordays #littlelady This just made my day. 
#Repost from @chloegoulden13
--- OKAY HI. So, as you probably know I am a huge advocate in raising awareness and funds for childhood cancer. Childhood cancer is the number one disease killer of our kids, with 46 kids being diagnosed a day and 7 dying a day in the United States alone. It receives next to no funding federally, and is swept under the rug because it is too sad. Well things have to change. The Ronan Thompson Foundation is a beyond amazing foundation in honour of Ronan Thompson who died at age 3. And through Taylor Swift and Maya (his mama) I've learned Ronan's story and become aware of the tragedy that is the world of childhood cancer. SEPTEMBER is childhood cancer awareness month and the colour is GOLD (official in HRM, HOLLA!🙌) and I intend to do my part. The #BeBoldGoGold campaign (created by Maya Thompson and Kassie Rehorn of the Ronan Thompson Foundation) is designed to spread awareness about this terrible disease in a fun way. Deck yourself out in gold and educate people, challenging them and your friends to do the same. This month I vow to do that... Through running. Throughout September, I will run as many races as need be to reach 50 kilometres (or 31.1 miles for all you American lovies) and spread awareness at each race. However, while awareness is great, funding is even better. So there will be a page set up where you can sponsor me throughout the month and support the cause. All money will go to the Ronan Thompson Foundation and the IWK Foundation to help kids locally and internationally, fight cancer. To learn more about it, go to www.facebook.com/chloesraceforgold or click the link in my bio. There will be a schedule, info and a place you can donate. Ronan, I am so sorry this happened to you. We will fix this broken world. #ronan #beboldgogold #theronanthompsonfoundation #iwk #halifax #fucancer #heshouldbehere
Follow

Get every new post delivered to your Inbox.

Join 24,152 other followers

%d bloggers like this: