A Very Merry Christmas???

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Ronan.  It’s nights like last night when I really wonder if you can see us.  You know how much I struggle with the whole heaven, white fluffy clouds thing and where exactly you are.  Late at night when I’m writing, I often have your urn sitting in front of me and sometimes I take a picture of it and through my writing tears, send some random message to your Mr. Sparkly Eyes about how wrong this is, how much I miss you, etc… This always leads to the next time I see him, him bringing up the picture as looks at me so intensely and says, “I promise you, those ashes are just ashes, he is always with you, always surrounding you.  I know he never leaves your side.” He says it in such a way that I without a doubt, believe him and truly do think that I am never without you; spiritually that is.  Still, it doesn’t make my pain any less.  So, on nights like last night, if you truly are around me I think to myself, This must be so hard for you to see. We were just having a normal, family night in our kitchen and your daddy and Quinn had just returned from playing basketball at The Village. Poppy was sound asleep and we were chatting away.  Liam came walking into the kitchen, visibly upset.  I asked him what was wrong.  He just stood there, fighting back his tears, trying to be so brave and strong but he couldn’t continue to hold anymore of his emotions in.  Your daddy grabbed him as he choked out the words, “I miss Ronan.”  This led me to stop what I was doing, which was busily cleaning up the kitchen as I watched your daddy hold Liam as he buried his head into his chest.  I surveyed the room and we all looked so… helpless.  Quinn was sitting at the kitchen table, and he kept looking down as if he didn’t know what to do.  Your daddy was holding in all the screams and cries that I knew he wanted so badly to let out.  Liam was sobbing.  I grabbed something and threw it as hard as I fucking could at the wall.  I then went over and grabbed Quinn and held him. I told Liam that he needed to get his feelings out, how that it is all too much to keep in.  I asked him to elaborate on the “I miss Ronan.” He told us how he misses playing with you and just wants to see you again. I could say nothing except for I was so sorry and I would give anything to bring you back. We talked about the importance of sharing our pain and our feelings.  Your daddy told Liam how sometimes he parks his car before going into a court appearance and just screams at the top of his lungs.  I told your brothers how I pretty much cry everyday still and that it’s o.k. to still be so sad that you got sick and cancer stole you away.  Your daddy reassured your brothers that we as a family are safe and will always be together. I took Liam and we went and snuggled on top of his bunk bed where he cried some more.  It was a rough night for everyone and Liam asked to see Dr. Rachel again so I made him an appointment.  I am so proud of him for knowing when to ask to see her and not being ashamed or afraid of it.  I started this post a while back, Ro.  We are doing alright and some really wonderful things have been happening, all because of you of course.

I really don’t even know what to say about all the beautiful things that keep happening except for I continue to be blown away by people’s beautiful hearts and the way they just want to do good things in the world, while expecting nothing in return.  Last week was one of those really, really amazing days.  The kind of amazing day that after it is all over, I can do nothing but bury myself in my bed and sob like a grieving mother who just lost her child, all over again.  It all started with a normal, “let’s collect toys for Ronan’s Candy Cart to take to the kids at PCH on the oncology floor.”  And you all were amazing to donate so many awesome things.  My friends, Katie and E, started collecting toys as well at their stores.  I was all set to go to PCH on Wednesday, but then my friend sent me a little text message. Her text said that her friend, Adrian Wilson, who is an NFL player, wanted to help with the candy/toy cart and was wondering if he could go to PCH with us on Thursday to deliver some things. I was of course over the moon about this so I sent an email over to PCH to ask if the day could be changed to accommodate Adrian’s schedule.  They were more than happy to do so for us.

I met E at Toys-R-Us this morning and a shopping we went.  I let E tackle the girl things as she has 3 of them and I took on the boy things as I don’t know a lot about the girl world of toys, just quite yet. Poppy is slowly teaching me but as of now, she is most interested in my car keys and anything else she an chew on like the teething little babe that she is. We loaded up cart after cart after cart… about 20 of them, packed full of the most amazing toys possible.  I made sure to grab a ton of Star Wars stuff and just about fell over when I found the Clone Trooper that stood about 3 feet tall.  Hot tears splashed down my cheeks as I grabbed him and told Poppy to move over for her new friend.  Ronan would have loved him was all I could think in my head.  As it came time to checkout, I helped to bag up the toys while E stood over the cash register with the biggest smile on her face.  I swear I saw freaking rainbows, fairies, and mother fucking unicorns flying over her head as it was that magical of a moment.  Adrian had offered to pay for EVERYTHING.  I was doing such a great job at keeping my shit together but then some random lady stopped me and said, “Are you the one doing this amazing thing for the hospital?” I told her I wasn’t, that it was NFL player Adrian Wilson and I was just lucky enough to be a part of his generosity. Well, I almost got all of those words out before the tears started splashing all over the Toys-R-Us floor.  There was no keeping my composure over this act of kindness at all- it was just too bittersweet and beautiful.  On my way to PCH, I called your Nana, sobbing.  I told her what I was doing, who it was that was this amazing thing and how sad I was that you were not here to see any of it or be a part of it.  We talked for a few minutes before I hung up and officially had to pull it together before stepping foot on the hospital floor.  We loaded all the toys into wagons, went and met Adrian at the front of the hospital and off we went to the 7th floor of PCH.  We were there for about 2 hours and everyone was so excited to see us and even more excited that Adrian had taken the time to come and do such a kind thing.  We got to go into most of the rooms and Adrian was so sweet and kind, offering pictures and autographs to all the kids and even their parents.  There were a lot of older kids on the floor who were sweet about all the dolls and toys that we brought, but were not really that in toys as many of them were older teens.  Adrian took care of that problem by getting their shoe sizes and told them the next day, we would deliver Jordan’s and Van’s to them from his sneaker store, High Point.  How crazy generous was that?  He stayed true to his word and the next day I met E at his store and we pimped those kids out with not only new shoes, but hoodies, stocking hats, socks, and watches, etc… Poppy and I dropped everything off and got the nicest phone call a few hours later about how excited the kids all were.  It felt so nice to be able to know that we were a part of making those kids smile for at least a few hours.  Adrian Wilson will forever go down as a hero in my book and I will forever be grateful that I was able to be a part of it.

I had a really hard time on Christmas Eve.  I picked your daddy up at the airport and was a total mess.  We ended up going into town to finish  up some last minute things and all I could really do was sob in the car while he tried to have some what of a conversation with me.  “Who is coming up to your parent’s tonight?” he asked me at one point.  I named out, “X, Y, and Z… and not Ronan!!!” I was sobbing, panicking, and not really breathing very well.  At some point while he was in a store that I could not go into because of my grieving mother of madness appearance, I got on my phone and started distracting myself with my Instagram feed.  The first thing that popped up was Taylor’s account as I guess she had just posted a new picture.  Through my red, swollen eyes I looked at the picture of her and her brother, in their matching Christmas pajama’s. Talk about adorable. Upon closer inspection I saw she was wearing something on her head.  It wasn’t just something, it was your Spicy Monkey Spirit Hood that I sent her.  I smiled though my tears and as your daddy got in the car I showed him the picture.  “Look, Taylor is wearing Ro’s hood.” He squeezed my hand and said something about how that had to make me feel a little bit better.  I told him it did and the timing of seeing that picture could not have been better.  It came just when I needed it most. To me such a simple thing served as a little reminder that there is so much good in this world, even during the hardest of times.  It also gave me that little extra push I needed to get through the rest of the day and night because Liam, Quinn and Poppy deserved to have a beautiful Christmas, Ronan, despite the always empty chair at the dinner table that will never be filled.  Thank you, sweet Taylor.  You make the most beautiful little spicy monkey and you have no idea how much seeing that smile on your face meant to me.  I hope you and your family had the most beautiful Christmas. I love you so much.

Christmas is over and we all survived.  I went out in the early morning before everyone got up to have some time to myself.  I talked to your Sparkly before I had to face the reality of you were not coming downstairs to unwrap the gifts we had bought for you.  He was working on Christmas of course and I gave him my best, “Are you busy saving the world today,” before I decided to sit on the phone and let him talk me through my tears.  I pulled over and listened as he did his best little pep talk which mostly consisted of “I’m so sorry and you know there is no good reason for this… Ro should be here with you.” I told him I knew, I loved him and thanked him for calling me as I knew his words would help carry me through the rest of the day like they always seem to do. They did and I let myself get as lost as I could in your brothers and that Poppy girl.  Watching them and seeing the smiles on their faces made Christmas some what bearable this year.  Poppy’s energy seems to be infectious to us all in such a good, positive way.  Thank you so much for her, Ronan.

It is good that we are away in Washington State for Christmas.  I was really needing a break from the never-ending sunshiny state that sometimes drains my soul.  I don’t think I can ever spend a Christmas in Arizona again.  I mean, of course I would if Liam and Quinn wanted it that way, but they are always so excited to come here.  Here it is dark, damp, dreary, and I can run for miles while getting lost the thickness of the fog that forever feels like home.  Here, I can breathe and I don’t have to constantly be wearing sunglasses to hide my tear soaked eyes.  Here, it just looks like my face is covered in the raindrops that are spilling down from the sky but we both know the truth, right Ro? And here that truth feels o.k. I’ve missed this place so much.

Sorry for the massively long update of everything and nothing. So much more to say, so sad I haven’t been writing, but I promise to get back to this once my book is finished.  I love you.  I miss you.  I hope you are safe.  Sweet dreams, little man.

xoxo

P.S. A HUGE thank you to Adrian Wilson again for the beautiful thing you did.  You are the definition of a beautiful soul.  Now, if only we could get that NFL to go GOLD for all the kids during the month of September…

P.P.S- Tyler Knott, you are the bees knees. Now please marry Ally. Thanks so much.

 

 

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

 

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.

Only Eddie Vedder could drink wine on a stage and make it look badass.

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Ronan.  Do I usually have this hard of a time, every year, right before the holidays? I think so, but to know so, I’d have to go back and read my blogs from the past years.  I’ve been doing enough reading of my blogs due to this book writing and I don’t feel like going back to read about the holiday seasons and how hard they have been for me every year since you left.  Every day is hard without you, but this time of the year there seems to be a shift about me that I cannot control.  Everything feels extra heavy, hard, sad, and the slightest things take up every ounce of energy I have just to get through the day.  I have been getting through the days alright really; I suppose.  That is actually a big fat lie.  I’ve been a fucking mess, but hiding it pretty well.  I’ve learned to become the ultimate pain hider.  I have learned to be present, to smile when all I want to do is cry, to be productive when all I want to do is curl up in my bed for a week, and to throw myself into things that take a lot of work, but the work leaves me distracted.  Oh, I’ve also been taking the best care ever of your Poppy sister 24/7.

I may have lost it last week which left me doing my normal screams and crying to your Mr. Sparkly Eyes.  “I think I’m having a mid-life crisis.” “Why the fuck did this happen?” “I talked to George Clooney last night and I’m going to run off with him.” (inside joke, but I really did freaking talk to George Clooney thanks to one Fairy Bad Ass RoMo) And my all time favorite, “Where is Ronan and who is taking care of him?”  I got sat down and talked to in the harshest but kindest way.  I was told I was in fact not having a mid life crisis, that everything I am feeling is just due to losing you which I of course already knew, but it was nice to hear it from a rational person.  “Listen, I cannot even fathom what you have gone through and will go through for the rest of your life.  I hurt badly from this and I only get to feel this on a small scale compared to you.  You have to carry this around with you forever, while the ones who cared about Ronan, your family, your friends, get to go on with their lives.  You don’t.  I cannot imagine what that must feel like for you.  But you are doing such amazing things and even if you can’t see it now, you are changing the world because of him and because of your pain.” I sat, listened, and fought back my tears the entire time that I was with him.  I let his words soak in and lick my wounds for a while.  “Tell me what I can do for you. Please.” I looked down at the floor and thought for a bit.  My list came in my mind later as I named off a few things, but really just thanked him for being such a dear friend.  He said some more things to me that I won’t repeat, but left me saying, “How do you know that?  How do you know everything?  Nobody knows that.  Does Ronan talk to you and tell you these things?”  I honestly think you do, Ronan.  There is no other way to explain how that man knows the darkest parts of my soul and heart, yet he is not afraid.  You only left me with the best and for that, I will always be thankful.  I sat quietly and watched as he bounced your baby sister on his lap and kissed her up and down.  She is so lucky to have him as her Godfather, to love and look after her.  I know he will keep her safe.

I’m full fledged in the middle of writing this book.  I told your daddy if I had a month, uninterrupted, I could finish it, easily.  The problem I’m facing is I may have too much material, and too much to say.  Go figure.  I’ve been writing about your treatment, which has been hard.  Reliving the things you went through, has not been fun and it’s not what I want this book to be about, so I’ve been trying to make this section, as short as possible.  This book writing has left me not sleeping or eating well and may be part of the reason why I feel like I’m no the verge of a breakdown.  I just keep telling myself, I’ve got to just get though this part, but it’s not like I have anything to look forward to next as I will just be writing about your death.  Fucking cancer.

As far as an update goes, things here for the most part have been normal.  Your brothers are playing a slew of sports 24/7.  Basketball, Baseball, and Flag Football.  I, of course, look for you on every field and on every team.  It still blows my mind that you are never there.  I know for a fact that you would be playing all the sports that your brothers are and dominating in every way.  You were always are mini Pat Tillman who was going to rule the world.  Poppy is developing such a little personality and at 7 months, is already trying to walk.  She has been keeping me on my toes and the determination that I see in her eyes reminds me so much of you.  My days are mostly spent taking care of her while continuing to fight for you and all that was stolen from us.  I’ve been hiking like crazy, with Poppy in tow of course.  She loves it and usually just falls asleep the entire time.  It’s our peaceful time to spend with you and the small time out of my day that I try to take for myself to be with my grief/plot how I’m going to take over this fucked up world.  I went to the Pearl Jam concert a few nights ago with your daddy, Uncle Jay, and Char.  Sometimes all you need in life is a little Eddie Vedder to remind you of who you really are.  I love that man and the concert was unreal.  By far one of the best ones I’ve been to.  Eddie Vedder will forever be one of my idols in life as I appreciate so much how he just lives his life the way he wants, with no apologies.  He just is who he is.  Not to mention the fact that he is deliciously handsome, insanely talented, and I could just stop and melt right here.  It was a great night, to say the least.  Pearl Jam ended the concert with “Keep On Rocking In The Free World,” and of course I sang along as loudly as I could while I thought of you the entire time.  I miss you so much, Ro.

Time to go, little man.  It’s raining like crazy here today.  I miss you.  I love you.  I hope you are safe.

xoxo

P.S. For those of you who have been trying to order some things on our Big Cartel site, I SO apologize.  We have been dealing with some *cough cough* technical difficulties.  It is being worked on and will be re launched soon as we also have a new foundation logo to unveil.  Our seal needed a little make-over and update.  I’ll keep you posted on when things are ready.  Thanks as always for your love and support.

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!