Get your Spicy on!

1383776339946_spicywomens.312w

 

 

 

They’re back! I am thrilled to announce that the spicy monkey SpiritHoods are now back in stock just in time for fall.  They make such great gifts and kept Ronan’s bald little head so warm in the hospital.  He loved wearing his so much.

 

100% of the profits go to The Ronan Thompson Foundation which is just beyond amazing.  A huge thank you to our friends at SpiritHoods for releasing these again just in time for September to help us bring awareness to this cause.

Thank you all for your continued love and support!!

 

https://www.spirithoods.com/spicymonkeys

Are you ready to be a Spicy Monkey??

1382554336463_mens.312w

 

Our lovely friends at SpirtHoods are re-relasing the ever so popular Spicy Monkey just in time for September! There will only be a limited number available and the first time around, they sold out fast!

Stay tuned for a release date! We love this company so much!!!

 

 

https://www.spirithoods.com/spicymonkeys

Dear Empire State Building, Part 2

10390438_837764789569164_8069726864944176789_n

 

 

 

An Open Letter To Anyone Who Cares To Read It:

My name is Kassie. I am twenty-three years old. Like many around my age, I graduated from college this past year, and like even more people my age, I spend almost all of my time working an ungodly amount of hours at my first full-time, salary paid job (a job which I absolutely adore, by the way). When I do have a day off, I enjoy hanging out with family and friends, hiking, watching movies, and catching up on errands and laundry (and sleep!); in a lot of ways I guess you could say that I’m pretty much like every other kid (adult?) my age. I had a great childhood, I have two incredibly loving, strong, and supportive families, and I have a little brother who was diagnosed with a very rare and aggressive form of childhood cancer called Synovial Sarcoma when he was fifteen years old. It’s that last bit, the having a brother with childhood cancer bit, that has shaped me the most as a human being and made me who I am today-a strong and determined young woman who passionately advocates for children with cancer and works with a non-profit organization with the goal of funding life-saving research and clinical trials to ultimately find a cure for cancer and save the lives of cancers youngest and most vulnerable victims: children.

August 31, 2010: I was a sophomore at Arizona State University and had just gotten out of my last class of the day. My best friend Ann had just been diagnosed with Stage 4 colon cancer two weeks prior. I pulled out my cell phone as I walked across campus to get to my car. There was a text message from my dad that consisted of just seven words, “I need you to call me, ASAP”. An overwhelming feeling of dread filled me. I called him and he answered almost instantly. My dad’s voice was shaking. Was he crying? Was he mad? What was that sound in his voice? My dad proceeded to tell me that my grandma had just been diagnosed with breast cancer. He explained that even though it was scary they thought they had caught it early and she would get surgery and then chemo and the chances that she would beat this were good. I felt my stomach drop and told my dad how sorry I was. I automatically went to the positive, “So she has a good chance of being okay, right? She can make this. I know it.” But my dad didn’t answer my question. Instead he drew in a shaky breath and proceeded to tell me that there was more. It was my brother, Coleman. He had cancer too. Disbelief and shock hit me in the gut so hard I literally felt as if I’d had the wind knocked out of me. I do not remember the rest of the conversation I had on the phone with my dad that day. I just remember a tall kid with brown hair and sunglasses looking at me like I was crazy as I stumbled into the gravel and managed to find my balance by grabbing the nearest palm tree. To this day I find it odd that I remember exactly where I was, near the end of Palm Walk right by the SRC Fields on campus yet I can’t remember a single word my dad had said after telling me that my little brother had just been diagnosed with cancer. All I remember after that was being so dizzy that walking felt dangerous. I do not remember the drive home to my apartment, I just remember walking up the stairs to my complex, opening the door and barely managing to tell my best friend and roommate, Hannah, the news before collapsing into her arms in heaving, uncontrollable sobs. I may have been twenty years old but my best friend sat on the ground holding me in her lap as if I were a child. I will never forget that day.

Today-Sunday, August 17, 2014: In just fourteen short days, it will be exactly four years since my brother’s initial diagnosis. A lot has happened in those almost four years. I lost my best friend Ann to the terrible monster that is cancer. I learned about and was adopted into an entire community of families with children who were battling cancer. I changed my major so that I could go on to help children and their families understand their child’s diagnosis and be a shoulder to lean on and resource to help them navigate through the absolute uncertainty that is childhood cancer. I forged an even deeper bond with my little brother who never ceased to amaze me at how selfless, giving, hopeful, and inspiring he could be. I did a lot of research on my brother’s cancer as well as childhood cancer in general. I found a blog written by a mom whose son was going through treatment for cancer and through her words found someone else in this world that understood my complicated feelings and experiences in this cancer journey and helped me to find my own voice and become a huge advocate for childhood cancer. I began to raise money, attend events, and eventually work with The Ronan Thompson Foundation to make meaningful change in this world. I had a few birthdays. I sat with my brother one night as he told me he was roommates with a little boy in the hospital who was also going through chemotherapy and that he would give his life if it meant that little three-year old could survive his battle because “at least I’ve lived fifteen years and that’s a lot more than three”. I connected with the mom of Ronan Thompson, the woman behind the blog that had given me a voice when I was at a loss for words and helped me to find the courage to speak my mind on behalf of the kids who were suffering, even if that meant having people disregard me or tell me that what I had to say was too sad to be talked about. I became best friends with this woman, and only after meeting her for the first time did we realize that my little brother and her son had been roommates at Phoenix Children’s Hospital when they were receiving chemotherapy. I mourned the loss of a little boy with sparkly blue eyes that I had never met, yet had changed my life forever. I watched Taylor Swift sing her brand new song, Ronan, on the Stand Up To Cancer Telethon with Ronan’s family and friends as we all watched in awe with silent tears pouring down our faces. I attended two (soon to be three) Gold Parties in September to raise money for funding and research for new treatments for Neuroblastoma. I watched my brother’s hair come back, I watched him go back to playing sports and attending school and being a normal teenager while thanking the universe for every single second I had with my brother, healthy and happy. I watched my brother graduate from high school with tears in my eyes, overwhelmed with gratitude to witness this milestone when so many kids with cancer don’t make it. I graduated college and watched my brother go off to his first year of college. I laughed. I cried. I hiked. I ran two half marathons with no training to honor Ronan, my brother, and to raise money for Ronan’s foundation. I held my breath every time my brother went to the hospital to get scans to make sure his cancer stayed away, and I had my breath knocked out of me for the second time when after almost three years cancer free, scans came back with news that it was back again.

Like I said, a lot has happened in those almost four years. Maybe the most important thing that has happened is that I have witnessed the impact that one person can have on the world around her when she is brave and bold enough to stand up and speak out about the atrocities going on around her each and every day that everyone else is too scared, intimidated, or devastated to talk about. I have learned that when one person is brave enough to stand up in the face of adversity and shine, it subconsciously gives others the permission and power to do the same. I have come to know what it is like to have a person you’ve never met before completely change your life. I have also come to know what it is like to have someone tell you that your compassion, dedication, and courage has changed their life forever. I have watched the childhood cancer community that I was adopted into four years ago evolve and change, becoming more cohesive, recognized, and powerful and I have watched our community use that power to positively and passionately enact change that had lead us in the right direction, on a path that leads to a future where children getting cancer is only something you read about in history books. We have a long road ahead but there is power in the baby steps we have made towards our goal. There is so much work yet to be done but I can promise you we are not losing steam; we are only gaining momentum. Our biggest roadblock is in a lack of understanding and awareness that childhood cancer is not a rarity. 46 children are diagnosed with cancer every single day, and seven children will die from cancer today alone. Another obstacle we as a community face is that the general public finds childhood cancer too tragic a topic to broach meaningfully, let alone superficially.

While I will not speak for the childhood community as a whole, I can speak for myself, as the sister of a cancer fighter. All I want is to turn around the odds for kids fighting cancer. I want our society to finally decide that although talking about childhood cancer is extremely sad, devastating, and sometimes uncomfortable, we are more horrified and uncomfortable with the fact that thousands upon thousands of kids are dying from this disease and because of this we decide to shed light on this topic and force ourselves to ask the hard questions and demand answers and better funding for our kids. I never want another family to have a doctor tell them their child has cancer. I never want another parent to watch their child die in their arms. I want to fight for a world where children make it out of childhood alive. I want my little brother to be given the chance to get better and stay better, to know and experience all the many ages and stages of life, I want him to get a full and long lifetime on this earth.

The childhood cancer community I belong to is a passionate, dedicated, strong-willed, and extremely vocal one. But one thing we are not is violent, malicious, or ill wishing. I can promise you that any person who has ever loved someone with cancer is not capable of wishing the same on any other person, ever. I could not and would not wish cancer on anyone, no matter who they were or what they have done and the thought alone makes me feel sick to my stomach. The individuals I have met in this community of people brought together by cancer are some of the kindest, most compassionate, awe-inspiring, absolutely amazing human beings I have ever encountered. They are the kind of human beings that give me hope for a brighter future not just for our kids but also for the world in general. While we will not give up on what we are passionate about and have more fight and will power in us than any other group of people I’ve ever known, we do not use that fight and will power to tear others down, make threats, or tarnish others reputations. To do so is not in our nature and it is not in any way related to our ultimate mission: to find a cure to the many different cancers that afflict children and stop other families from feeling the pain that we have. Our goal, our fight, our mission has always been and always will be to find a cure to the merciless disease that continues to kills our sons, daughters, sisters, and brothers. It has always been about our kids, and to make it about anything other than that is something we will not stand for. Whether childhood cancer has affected you personally or not, I ask you, I beg of you, to advocate for our community in a way that your own child would be proud of. It is indeed possible to fight for our kids with passion, spice, and determination and also do so gracefully and in a way that is not malicious or harmful to others. I want our community to be known for the leaps and bounds we made in the research and treatment of childhood cancer and ultimately for curing childhood cancer. We are a group of people who despite unimaginable tragedy continue to come together, support one another, and lift each other up to make meaningful and lasting change in this world and overcome seemingly insurmountable odds. We are not the bullies that were addressed in the Empire State Building’s press release today, and if you have joined our community fight with the intention of being malicious and threatening, our cause is not one we need or want you representing.

Each and every day I will live with love, compassion, and strength. I will be a voice for the voiceless and I will represent our children fiercely but with integrity, respect, and grace. Thank you to everyone who has helped us in our fight for a future where childhood cancer does not exist. Thank you to the childhood cancer community that embraced me from the day of my brother’s diagnosis four years ago. Thank you to the incredible people I have met during this journey that have inspired, strengthened and loved me along the way. Empire State Building, we are not the bullies you addressed today in your statement. We are not the abusive and ill wishing “childhood cancer advocates” you talked about. While our fight to light up the Empire State Building in Gold for Childhood Cancer Awareness month is far from over, our plan of attack will never include threatening, demoralizing, or attacking any human being, whether they choose to help us shine a much needed light on the world of childhood cancer or not.

Stay Gold,

Kassie Rehorn

IMG_9886

The day you died, the day you were born and the day you died again because you were put in a urn. Happy should have been 7th birthday, my spicy Ro.

10277631_10152470522586667_3424311708954636435_n

 

 

 

Ronan.  I didn’t die from the fuckwad of May dates that I had to get through.  The day you died. Mother’s Day. Your birthday, which was also the day you were cremated. And the day we had your celebration of life aka a bullshit word I think I let everyone around me make up when it should have just been called “the most fucked up reason for a funeral” because that is how I really feel about it.  We went away for May.  It was as good of a trip as it could possibly be, despite the circumstances.  We went to New York and spent about a week out in the Hamptons with our dear friends who are pretty much the only reason I got through everything alright.  On the day you died, I didn’t sleep much.  I tossed and turned the night before and sent my same text that I send every single year around 3:20 in the morning to Mr. Sparkly Eyes because he was the first person I texted after you died and I’m weird with my rituals like that.  I said what I always say which is how I hope he never forgets how much you loved him.  How thankful I am for him and the role he played in your life and how I will never forget how above and beyond he went for you and continues to do so in this life now.  He called me a few hours later and I ran outside, barefoot so I could talk to him without waking up the entire house.

“Are you o.k.? That is a stupid question. I know you are not.”

I told him it was ok, that I was as o.k. as I could possibly be. I didn’t cry this year when he called for some reason.  I just let his words sink in and took his advice which was basically, “You don’t get to stay in bed today because that is not fair to Ronan or your other kids, so go out and do something.” I told him I would and I listened again as he told me how sorry he was.  I thanked him for calling and told him to please go and do something for you today, besides work.  He said that he would.

We spent the majority of the day, outside in the cooler temps by the ocean.  We played in the grass, rolled down hills, climbed to the top of a lighthouse, watched Poppy go to town picking flowers and ended the night by jumping in our freezing cold pool.  We were pretty much surrounded by friends the entire time we were in the Hamptons and it is because of this that our days and nights were actually filled with smiles and laughter.  Poppy kept everyone on their toes with her constant dancing to Pharrell Williams, “Happy.” A couple of years ago I know hearing this song would have thrown me right over the edge.  Now I am able to dance and sing to it and I know that is all because of her.  How can one not feel happy watching a one year old pump her little arms and rock back and forth on her chubby little legs to the beat of this song? Impossible even when you have an almost 4-year-old in an urn and kissing that goodnight is the closest you will ever get to kissing his little body again.

We spent your birthday in the city.  We started it off by grabbing pizza at your favorite place which is right by the Ronald McDonald House.  We then walked through the city a bit and went to see our good friend, Scott at Solving Kids’ Cancer.  Your daddy hadn’t met Scott before but they talk a lot on the phone.  I was beyond excited for the two of them to meet because 1)Scott is amazing and 2) They remind me a lot of each other. Of course they hit it off and seeing the two of them together made me smile on your beautiful day. I stepped out of our “meeting” and ran across the street to meet up with a favorite editor of mine in the literary world.  It was so good to hug her and catch her up on this book/life/fuck cancer/she couldn’t believe it was your 7th birthday.  She was so good about checking in with me to see that I was alright the entire time we were together. Our time together was so nice and I was so glad I got to introduce her to your daddy since he hears me talk about her so much.

After our impromptu meetings, we continued to do all your favorite things in the city.  Poppy took the streets by storm of course and I did my best to let her have a little freedom, while trying to keep her safe from getting run over by the crazy NYC taxis.  It was the first time in my life that I understood why those parents put their kids on leashes; because I totally wished I had one that day.  Instead, I chased your sister down the sidewalks as she took off without looking back at all and after a minute I would have to grab her from behind, pick her up to keep her out of harms way, all while she screamed bloody murder for me to put her down.  She seems to have turned a corner since turning one and I’m not sure there is any going back.  Miss Independent EXTRA spicy Poppy it is.  I, of course wouldn’t have it any other way.

We walked as much of the city as we could.  Stopped for a little pit stop in Central Park so Poppy could actually do some real running.  I plopped down in the grass, exhausted from a beyond mentally exhausting day.  Your brothers ran all about and your daddy took your sister to play on the playground while I stayed behind, laying in the grass and looking up at the sky.  After about 10 minutes, all the tears I had been holding back came pouring out and I just gave in and let them, not caring who would see.  My little, Rachel, came walking over soon after as she had been trying to find us in the park.  Just in time for me to bury my head in her lap while telling her, “I haven’t been very spicy today” as the snot dripped out of my nose and tears plopped out of my eyes and on to her jeans. She stroked my hair and said it was alright.  I cried for a few minutes more and then got up to decorate the most beautiful tree with a ton of your Ronan bracelets.  I had to do something spicy, so I climbed up the tree and sat there for a bit.  I can’t remember the last time I’ve climbed a tree and I wonder why.  It was lovely up there and so something you would have done.  At this time, it was getting dark so we parted ways with Rachel and ended up back at your favorite pizza place, one last time.  We had one last thing to do which was our random act of kindness so we bought a ton of gift cards at the pharmacy next door and I took your brothers and marched my little butt right back into that Ronald McDonald House where we spent so much time.  I told them I wanted to drop them off to give out to the family’s that were staying there.  I had a flashback of you in the lobby there, right when we arrived and you were wearing your cute little warm hat, standing on the luggage carrier giving me the biggest smile as if you trusted me with your life because you knew I was going to get you better and fix all of this.  I’ll never forget the look in your eyes as they sparkled so bright and were full of such hope, trust and love.  I’m so sorry that you will never get to be 7 and instead you will be always almost 4. I’m so fucking sorry.

Ending this now with some words I read a while ago and I like to read them again when everything seems to be lost in the world, but I know it’s not because once upon a time, you were mine and I was yours.  You always will be mine, even if you are not here but somewhere else where I know I will see you again.  I wish knowing that made things hurt less, Ronan.  Sometimes this pain is all too much.

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

On this day, you read something that moved you and made you realise there were no more fears to fear. No tears to cry. No head to hang in shame. That every time you thought you’d offended someone, it was all just in your head and really, they love you with all their heart and nothing will ever change that. That everyone and everything lives on inside you. That that doesn’t make any of it any less real.

That soft touches will change you and stay with you longer than hard ones.

That being alone means you’re free. That old lovers miss you and new lovers want you and the one you’re with is the one you’re meant to be with. That the tingles running down your arms are angel feathers and they whisper in your ear, constantly, if you choose to hear them. That everything you want to happen, will happen, if you decide you want it enough. That every time you think a sad thought, you can think a happy one instead.

That you control that completely.

That the people who make you laugh are more beautiful than beautiful people. That you laugh more than you cry. That crying is good for you. That the people you hate wish you would stop and you do too.

That your friends are reflections of the best parts of you. That you are more than the sum total of the things you know and how you react to them. That dancing is sometimes more important than listening to the music.

That the most embarrassing, awkward moments of your life are only remembered by you and no one else. That no one judges you when you walk into a room and all they really want to know, is if you’re judging them. That what you make and what you do with your time is more important than you’ll ever fathom and should be treated as such. That the difference between a job and art is passion. That neither defines who you are. That talking to strangers is how you make friends.

That bad days end but a smile can go around the world. That life contradicts itself, constantly. That’s why it’s worth living.

That the difference between pain and love is time. That love is only as real as you want it to be. That if you feel good, you look good but it doesn’t always work the other way around.

That the sun will rise each day and it’s up to you each day if you match it. That nothing matters up until this point. That what you decide now, in this moment, will change the future. Forever.

That rain is beautiful.

And so are you.

 

This slideshow requires JavaScript.

A Very Merry Christmas???

74245201289bfd6361865f36660d2cb2

 

 

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.

 

 

Spirit Hoods are back in stock!

1382264_584134078288298_1431452700_n

Spicy Monkey Spirit Hoods are back in stock as of 3pm pacific time. The first run sold out in barely 90 minutes, so if you want one…don’t wait! Even if you don’t have kids, or want to wear one yourself, DONATE one or 10 to a children’s hospital. Bald little babes everywhere, should have one of these.
http://theden.spirithoods.com/ronanthompson/

We have to thank Alexander and Shayoon and everyone else at Spirit Hoods for this incredible experience! Seeing how enthusiastic and supportive everyone has been about the spicy monkey hood reminds us of how Ronan would have been so beyond excited to see it. Thank you all so, so much. This is honestly a dream come true.

Ronan, you little Spicy Monkey. This is for you and all the other kids who deserve better. Thank you, SpiritHoods for being such an amazing company.

1527941_4374689_lz

http://theden.spirithoods.com/ronanthompson/

Love our Lovies! Thank you for all you do for The Ronan Thompson Foundation!

1374767283671973_tall

 

http://theronanthompsonfoundation.com/lovies

Nothing like some hometown love to kick cancer’s ass

tumblr_mpyqcrFRfs1qcu5pyo1_500

Ronan. I don’t remember the last time I’ve written to you and I don’t like that. My days are so consumed with trying to be the best mama to your brothers and sister. This means no computer time, only a little time is spent posting the never ending cute little Poppy pics on Instagram as my way of trying to keep up with all of your lovies out there. They seem to be growing by the day and that makes me so proud. My nights have been spent writing and working on this book. My nights have been spent writing accompanied by hot flashes and puking over the toilet again due to living this fucked up “journey” over in my head again and writing it all out to tell our little story. Don’t get me wrong, I am grateful for the opportunity, but it’s still very difficult. I got through your diagnoses and I had no idea writing about that again would leave my head spinning in the way that it did. I can’t imagine what writing about your death will be like for me. This is the part where all you lovelies chime in on how brave I am. I don’t feel brave. I just feel like a mama who will do whatever it takes to continue fighting on for her child. Wouldn’t every mama walk to the end of the earth to make sure their child’s legacy lives on? To make sure good things continue to go on, because of their baby? I would like to think so. This is also just me, grabbing on to anything and everything I can, to still get to be your mama and parent you, Ronan. I don’t get to teach you all the things I dreamed of. I don’t get to scold you when you are being naughty… The only way I can get to you, is through these things that I am so desperately trying to do. Sometimes I feel like I’m grasping at thin air, sometimes I get tired and so very sad, but I have never in my life wanted to give up or quit. No matter how frustrated or sad I get because I know at the end of the day, you’re not coming back. And that is all I want more than anything in the world. But all the gratitude and good things will keep me going… I promise you that.

Today is an amazing example of good things that will keep me going. My little hometown showed some major RoLove today. I got asked to lead a 5k run that some girls I know wanted to throw together at our Lake Sacajawea. Of course I said yes and that is pretty much all I did. Everyone else buzzed about, working their butts off to make this “Run Like A Rockstar” 5k run, happened and it ran smoothly. All I did was try to get in a few runs before the big event so I could actually try to make it around the lake without having to be pushed in a wheel barrel. We had such an amazing turn out and I felt like I was floating in a sea of purple the entire day. I ran the lake as fast as I could with an injured knee from my previous running that I have been doing. I ended up walking a bit too but I was fine with that. One of my oldest friends, Laura was sweet enough to stay back with me so I didn’t have to walk alone. She talked about how she was so excited to run this but then pulling up to park and seeing your little face on the poster was just awful. How this was such an awful reason to have to run. I told her I knew. How surreal this all still seems to me. I know I used the word unfair through my tears. How could my baby be just fucking dead? How could my totally healthy, beautiful baby boy be so healthy, and then have fucking stage 4 cancer just like that? Through her tears she told me she was sorry, but how proud she was of all the things we are doing. I am proud, too Ronan. I know we are and will change this world in a very big way but FUCK. What I wouldn’t give to have just one more second with you. What I wouldn’t give to have my old life back. I can’t though. I know this but sometimes I like to close my eyes and just pretend.

I finished the lake and my knee actually felt o.k. My time sucked but today, I had nothing to prove at all. I was just happy to finish without injuring myself even more. You know who kicked ass in the race today, Ronan? Your brothers. I had no idea that I had little runners in our family! Liam has been going on some runs with me at night, but I had no idea he could run 3.6 miles in 30 minutes. Holy smokes I was blown away! Quinn came in just a few minutes after him. Liam ran pretty much the whole lake, by himself. This totally brings tears to my eyes because I know he did this for you, and how proud you are of him. I am so proud of them both not only today, but always. Such amazing little boys they are.

After the race I got a chance to meet some really lovely people who all love you so much. It was an emotional day but so rewarding as well. I am so grateful to everyone who came to support your foundation. Thank you to all of my rad hometown babes who worked so hard to get this all done. I know you are doing these things for the RIGHT reasons and nothing more than that. That is so important to me. Thank you for never forgetting my little guy who continues to inspire you daily. Thank you for keeping his mama going by showing me how much the power of love can move mountains. I am so proud to call you all my friends and I will never forget what you did for us not only today, but always. This is just the beginning. I cannot wait for next year and I am so proud to call this place, home.

Alright little man. I need to get in some hours working on this book. I talked to your Sparkly the other day. I miss him when we are away so much. He knows that I’ve been staying up late, working on this book and I listened to him as he said with urgency in his voice, that I need to get this done so I can “Fuck Cancer.” I know what the urgency meant. It meant that kids are dying, dying, dying and nobody is paying attention. I know he feels the same way that I do, that this book is not only our beautiful, tragic love story, but it is another way to spread awareness as well. I am doing the best I can, working as fast as I can, but I also know this cannot be rushed. All I can do is my best and I want to do this the right way, not the rushed way. I am just proud that I actually started it and I am making progress.

Alright little man. Back to the book. I miss you. I love you. I hope you are safe. G’nite, babydoll.

xoxo

photo 1 photo 2 photo 3

Secret Dimples and Butterflies

tumblr_mp564w34Dd1rojbm4o1_500

Ronan. You know what got me through today? That little secret dimple you gave Poppy. The exact same one you had hidden on your little right lower cheek. The one that only came out when you smile or pouted.

The picture below is you at around a year. This was Poppy yesterday. That secret little dimple is such a gift that every time I see it, I get butterflies in my stomach. You are beyond amazing for doing this and this is absolute proof that you played such a huge role in all things Poppy.

Thank you, Ro.

xoxo

334_34485346666_1349_nphoto 5

  • Instagram is my BFF

    I took Pearl to the library today. I don't think she's going to be allowed back. #ronan #fucancer #fuckinpearl #blacksheep #rebel #kickedout #bannedforlife #boozebeforebooks Monday Mantra. #ronan #fucancer #goodmorningworld #ilovemondays #imissyou @macywood_ Li Li Love. #ronan #fucancer #poppyroo #liamlove #littleballers #arcadiatitans #bestbigbros #luckylittlegirl
Follow

Get every new post delivered to your Inbox.

Join 24,083 other followers

%d bloggers like this: