If you don’t stop using my son’s pictures, I’m about to get all Jerry Springer on your ass

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As many of you are aware, there have been a few issues with boundaries being crossed in terms of Ronan’s image being used. For the most part, these were limited to young people making “edits”, copying Ronan into a photo of Poppy, things like that…and again for the most part, when we asked people to stop doing that, they did.

But there are a few people out there who are so disgusting, they want to use Ronan’s beautiful face to make money. Not money for cancer research or to help families in need. Money to line their own pockets.

Last month, we were informed a “foundation” was using Ronan’s photo on all of their pages. The photo of Ronan with his little eye battered and blackened was all over the social media pages of this entity, and with it was a plea for donations. To them, not our foundation.

They did not ask me.

They did not even TELL me.

They just stole my child and pasted his little face all over their social media sites.

We contacted them, of course. And we were given a bullshit excuse about it being the “mistake” of an intern.

So here we are not even one month later on March 7th, and whose face is at the forefront of ALL their pages yet again?

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My son.

MY son, who may be known to millions because of this blog …but who is not public property to be manipulated and used.

It turns out this “charity” is using multiple images without permission. Make no mistake, there is no “intern” making a goof or a “customer service team” correcting them. This is a person who is aware Ronan is well known and he thought he could get away with making people think we somehow endorse or support his “charity.”

Ronan is not a piece of meat. He’s not a commodity to trade in. He was a living, breathing child…whose absence is felt in a devastatingly harsh way, every single day. Seeing things like this, seeing people USE our child for personal gain…it makes me physically sick.

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I have been lied to.  I have had words put into my mouth that I have never said.  I have had people in my life try to ruin my friendships. I have dealt with over-sized egos and hidden agendas. I have had people try to use my son, his story, and all he stands for to gain something for themselves.  I have had way too many tweens claiming to be Ronan’s cousin, while crying through social media that they feel the physical pain of missing him when in fact they never even knew him.  I have had mothers straight lie to me, claiming to be a “cancer mom” just like me, when in fact they are not but that doesn’t stop them from begging me to do x,y, and z for them. I have had people claiming to be DYING from cancer which have turned out to be LIES. I have had cancer kids’ made up by other people, just hoping that I would take the bait, and a couple of times I have because who the fuck would make up something like that??? My words have been plagiarized, stolen, and used.  I have tried my best to deal with these situations quietly and to rise above them.

I AM DONE.

After the day I had today where I spent the majority of it crying my real fucking tears for the never-ending pain I feel from this life without my son, I AM MORE THAN FUCKING DONE.  All the other stuff I am capable of handling on my own.  This fucking “charity” has crossed the line.

So they want to use my baby’s image to ask for donations?

Fine. I’ll use their “baby”, too. To NOT ask for donations:

DO NOT SUPPORT THEM. WE DO NOT SUPPORT THEM AND ARE NO WAY AFFILIATED WITH THEM.

I am also asking once again, for THE CHILDREN’S HOSPITALS NATIONAL FOUNDATION to remove any pictures of Ronan, right fucking NOW.

Sincerely,

One very pissed off mother who actually works her ass off to raise real money to help real fucking kids, not to line her pockets.

Rock for Ronan. Look what a bunch of amazingly talented souls put together. Now available on iTunes.

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http://rockforronan.com

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-

 

 

 

A quick little check in because I miss you oh so very much.

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Ronan. Oh, how I miss this little blog so very much.  It makes me so sad not to be writing on here like I used to.  This will always be my first home, my first comfort after a hard day, and where I found my love for writing.  It’s hard to be away from this space that I used to find so much solace in. I cannot seem to keep up with life let alone a blog these days, not to mention this book I’m working on.  And holy shitballs, I totally have forgotten how much work it is to have a new baby.  Things are so freaking busy around here that I feel like my head is going to fly off and just explode.  Oh, and my grief.  I miss being with my grief a.k.a Inferno Fuckwad Bob, so very much. It’s not good for me to not have the time to nurture and sit with my grief the way Dr. Jo has taught me to do.  I promise that I will make some time for it soon.

I can try to sum up what has been going on, but I have no way of remembering everything.  Macy came into town for about a week and it was of course the most beautiful happy/sad/ time.  She was in for work so she got to spend two weekends with us which is always so good for my soul.  We laughed a lot and cried a lot as well.  On one particularly hard Sunday, I found myself curled up in her arms on your bed where I just sobbed for you as the missing you part of all of this never gets easier.  It still sends me into a whirlwind of complete and utter devastation at the drop of a hat.  My time with Macy wasn’t all tears.  We had the BEST time playing with your Poppy Roo and making up ridiculous songs to her like, “My two moms” which was all about the fact that Poppy does indeed, have two moms because if I wasn’t married to your daddy, I would totally marry her;) She is the best wife ever and one of my other little soul mates floating around on this earth.

Poppy came down with a little fever while she was here and we wound up in the waiting room at our pediatricians office where we know we really did look like Poppy’s two mom’s as we were resting each others heads on one another’s while Macy sat and rubbed my arm.  I pretty much wanted to curl up and die when I saw Dr. Campbell exam Poppy and Macy’s eyes fill with tears as she did her routine exam which included the pressing down hard on her belly to make sure there was nothing out of the ordinary there.  Macy knew why she was doing that and there was no stopping her tears from falling.  I just gave her a weak smile as I watched her wipe them away.  We talked about it afterwards and how hard it often is for me to walk back into our pediatricians office without you. Well, it’s always really hard for me to walk back in anywhere we used to go, without you.  Macy watched as I had to fill out the new patient forms updating our family info such as kids’ names, ages, etc… I looked over at Mace and said, “I’m writing Ronan down, too. He is still my child.” Macy just looked at me and said, “Of course you should,” as she gave my hand a little squeeze.

My weeks have been filled with pretty much everything Poppy and just trying to keep up with her.  I truly had forgotten what it is like to have a baby and now a very active baby.  How 10 months already flew by, I do not know.  She is the happiest little thing and it is so beautiful to see.  She is my constant reminder that no matter how hard of a time I truly think I am having, because there still are times that those voices creep into my head and tell me that everything I am doing is wrong… Poppy is proof that I am actually doing alright.  I don’t think she would be such a happy girl if I really were doing as shitty as I sometimes think I am.  I know the weeks that are hardest for me seem to be the weeks that I am not sleeping well.  It’s when my insomnia kicks in that the screaming in my head seems to always be the loudest.  This past week has been alright and I am so thankful for that because if I would have checked in with you last week, I would have told you I had my bags packed to check into an insane asylum.

Your brothers and their never ending sports have been keeping me busy as well, although I give pretty much all of the credit to your daddy who is the one who really keeps them on track with all if it with his coaching of their baseball team, helping out with baseball, and flag football. He is the most amazing basketball coach and has your brothers team ranked #2 in all of Arizona for a fourth grade team.  I know you would be so proud of that and basketball truly seems to have been such a saving grace to your brothers.  It has kept them focused, on track, and it’s almost like a form of therapy for them.  I could not be more proud of their dedication, will and determination.

I’ve been hiking, running, and doing my little Orange Theory Workouts like crazy.  Exercise is still one of the main things that quiets the screaming in my head and gives me just enough of a break to stay sane.  My time at the top of Camelback is always my favorite as it really is the time I feel quietest and closest to you.  The other day while I was sitting on a rock, thinking about you, I had a little hummingbird fly right up to my face.  I grabbed my iPhone thinking there was no way it was going to stay right there long enough for me to get a picture, but it did and I was able to snap the most amazing photo.  It was a moment that I still have not been able to find the words for.  I absolutely know that it was a little sign from you telling me that you are always with me.  On Saturday morning I hiked Camelback with Tricia and Marisa- my two oldest besties from my previous life when you were still here, alive and well.  It has been so long since I have been with the two of them and I cannot tell you how nice it felt.  We had breakfast for Marisa’s birthday and then decided to brave it up Camelback Mountain in the middle of our little Arizona rainy day.  Once we were at the top and had been sitting for a while,   that little hummingbird flew right up to me again.  It gave me goosebumps and chills all at the same time.  I think it was your way of telling me that you were so happy to see me spending time again with my old friends, as you know they are so good for me.  It’s taken me a lot time to be able to get to a place again where I can truly connect with the ones who knew you, loved you, and hurt so badly from losing you.  For a long time the pain of being around them was just too much, but now I feel like I am at a place where I am ready and able to come back.  I am just so thankful that they have both just been standing by for my return.  I have missed them so much and Saturday ended up being the most perfect day.  As soon as we were finishing up our hike, it started pouring down rain.  Marisa said she knew that you made it rain at that perfect time because had it been raining like that as we were climbing down Camelback, one of us would have surly fallen and broken our necks as that mountain is beyond slippery and dangerous when it’s wet.

I am trying to make myself do things that I know make me feel somewhat good because I know the shit storm of May is fast approaching.  Things like buying tickets to upcoming concerts like Lorde and Lana Del Rae, both whom I am so freaking excited for.  Also things like spending time with the ones who I know are best for my soul like our dear Kassie who I spent all of Saturday with watching “Girls” episodes while eating Nutella straight out of the jar. Ummm… excuse me…. but where has this thing called Nutella been all of my life?! It’s like crack in a jar and I might have a problem especially during my nights of insomnia where I always find myself with a spoonful of it in my mouth. It’s the simple things that make me the happiest and I have learned that finding people who truly feed your soul is the best medicine around.  I am very blessed to have the friends that I do, I know this. Your Sparkly was inquiring about my weekend and I told him I had spent Saturday night, cuddled up with my 23-year-old best friend.  He said something like, “How come you love to spend so much time with people who are so much younger than you?” I just laughed and told him I like to hang out with people based on who they are as human beings and age is not a factor.  I like to spend my time with the people who make me think about things, who push me to do better and be better, and who actually somewhat get me – himself included.  I often feel like people get too caught up in this whole age thing in life.  You should just be with the people that make you happiest and Kassie truly makes my heart sing.  I wish so badly you could be here to know her, Ronan.  Sometimes when I’m watching her with your Poppy sister, I close my eyes and pretend it’s you that she is bonding with, kissing on, and loving.  I know that in a way it is and sometimes that even makes me smile.

Alright little man.  I promise to write more later.  So much more I need to tell you/fill you in on but this is all I have time for as of now.

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

xoxo

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Your song for the night. Sorry it’s been so long since I’ve done one, Ro baby.

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Obsessed with this song.  It may make me bawl like a baby, but it is so beautiful. Plus, Poppy loves it.

http://www.youtube.com/watch?v=-2U0Ivkn2Ds

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

For all of you out of state peeps…

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You all are the sweetest for wanting to send stuff.  Thank you so much!!

If you would like to contribute to the Candy Cart, you can send your items to our P.O. Box.  The address is:

P.O.Box 44935

Phoenix, Arizona

85064-4935

 

For all my Arizona peeps…

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These 2 “elfs” are requesting unwrapped gifts for The Ronan Thompson Foundation Candy Cart. If you visit Garage Boutique for Kids, Nove’, or High Point this holiday season, please bring in an unwrapped toy to receive 15% off your entire purchase.  These toys will be used for Ronan’s Candy Cart when we visit Phoenix Children’s Hospital.

Thank you and happy shopping!!!

xx

 

 

 

An 8 month birthday and 31 month death-i-versary. F U 31 months.

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Ronan.  Thanksgiving is over.  There was no Macegiving this year, as our sweet Macy that saves us on every holiday, could not swing coming in.  She was heartbroken about it, as were we.  We all missed her so very much, but we will be seeing her soon in January which we cannot wait for.  Of course I got all crazy trying to make a plan for Macegiving, without Macy.  After a lot of panicking in my head, crying, and thinking how can I possibly do another holiday without you? I aborted freak out mission in my head.  I made a different plan instead and it was called, “Stop putting so much pressure on yourself because it’s just another day.”  I gathered my thoughts and took some time to think about what this Thanksgiving/Macegiving/Fucksgiving meant to us as a family.  I talked to your daddy about what he wanted to do and what I was wanting to do and we came up with the most non-stressful, no pressure plan ever.  I knew that I wanted to go to Phoenix Children’s Hospital that day for a couple of hours to take around your candy cart, so I gathered up some of my best “homies” and that is what we did.  The hospital was packed, unfortunately.  I was hoping it would have been empty on this holiday as it’s so hard to be stuck in a hospital on any day, but Thanksgiving day just seems extra unfair.  I was glad to be there and it felt good to make so many kids/parents/siblings smile.  Doing the candy cart and handing out gifts is really what got me through the day.  We then came home to a super low-key Thanksgiving that wasn’t so bad and it almost just felt like another day.  We hung out, ate, watched football, and had ice-cream cake for Brianna’s birthday.  You were of course, were missed by us all.

Things seem to be moving at an incredible rate and not slowing down any time soon.  Some how, your Poppy sister is 8 months old today.  How in the world did that happen?  She is getting to be so much fun and your daddy has started calling her, “The Honey Badger” because of the way she is so determined about everything in life.  She is already so feisty and fun and has keeps us laughing a lot.  She has been so good for us all, Ro.  Your brothers absolutely adore her and she has brought back such a positive energy to our entire family.  Needless to say, I don’t know what we would do without her and I am so very thankful for this little gift you have given us.  I’ve said it before, but she truly has helped to save not only my life, but my soul.  Tomorrow, also makes 31 months without you and I still don’t know how that is possible either.  The fact that 3 years without you is approaching soon still leaves me breathless with the hugest pit in my stomach that I am starting to really believe will never go away.

I’ve also been having a really hard time writing this book.  So much so that the other day, I had a full on break down about it.  I’ve been writing a ton, Ronan, but that is it.  Only writing and not feeling a thing, while writing.  Uh, that has not been good for me at all.  Part of the reason I am doing this book is because I have certain things I need to feel while writing as it has become my form of therapy. I’ve been feeling numb and stuck, which has been leaving me frustrated beyond belief. The other night when I was in the middle of one of my pity parties to your Sparkly, I totally lost it and was about to the point where I was not sure what to do or how to fix this problem.  I took a little time out, had a long talk with you and what you would want from all of this, and all of a sudden it all became so clear to me.  I sat down, printed out all of my words and announced to our entire house hold, “I’m starting over on this book.” Liam and Quinn were like, “WHAT?! You can’t start over! Look at all you’ve written!” Your daddy chimed in, “Boys, sometimes that is what happens and we need to just be supportive of your mom.”  I started writing right then and there and I cannot seem to stop.  Finally, it feels right and I am so excited about the way I am doing this.  I am basically just using everything I had written out, as a road map to help me guide me along.  I’m also taking a little advice from my new pal, Ernest Hemingway who says, “Write hard and clear about what hurts.”  That is precisely what I am doing, all while keeping you right here with me.  Thanks for the good pep talk the other night, little man.  I really needed it. Now, back to book writing I go.  I’m sorry for the short update, but late at night is the only time I really get to sit down and write, so I have to focus on this book.

I miss you.  I love you.  I hope you are safe.  Sweet dreams, best friend.

xoxo

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

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

https://www.facebook.com/theronanthompsonfoundation

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

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

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

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

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

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

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

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

  • Instagram is my BFF

    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 It's a beautiful day in the neighborhood. #ronan #myneighboriscrazierthanyours #thisgoesoneveryday #neighborhoodproblems #movingtoiceland
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