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

May, May go away. Do not come again another day.

e560a4a83b6491e9b7dc03764391f5bd-1

 

 

 

Ronan.  May is officially here and I’m trying my best not to go into freak out mode.  You know what is coming up and it never gets easier.  May 9th will be 3 years without you and May 12th will be your 7th birthday.  Not to mention Mother’s Day, the day we had your funeral, the day you were cremated, which also happens to be on your birthday.  It’s all these fucked up dates that I wish didn’t exist, but they do and there is no escaping them.  I will come up with some sort of plan to get through the days like I always do and luckily I know we will be with some of my most favorite people, so hopefully that will help ease the pain just a bit, but every part of me remembers the pain of these dates.

I don’t even know what has happened since the last time I have written.  My days are filled with all things Poppy and that is about it.  I have really taken a step back from everything in life because for the past year, I just really needed to get lost in her and that is exactly what I have been doing.  She deserved that, Ronan and frankly, so did I.  I needed to just take this time and soak up all of her innocence, sweetness, and truly get to know my baby girl.  Poppy doesn’t have a lovie or a blanket that she is attached to when she sleeps like you did because you know what she uses instead? Me. I have not put her in her crib once to sleep, not even for a nap.  I rock her, lay her down in bed with me and listen to her as she hums and plays with the necklace that sweet Mrs. Martin gave to me when Poppy was born. It’s just the letter, “P” and she falls asleep every day and every night by holding on to me and my necklace.  That is how attached we have become and I wouldn’t have it any other way.  I cannot imagine doing this life without you AND without her.  I don’t know what I would have done had we had not had another baby.  She brings about me a calmness that has been missing for so long.

It did happen the other day though.  The thing I knew was going to happen sooner or later; I am just surprised it happened while she is so young.  It was about a week after her first birthday and I was laying her down to change her on your bed.  We have that huge picture of you hanging over your bed and as I was putting a new diaper on her she looked over at your picture, pointed and goes “Ro Ro.”

I almost fell over.  I truly thought I was hearing things so I said, “What did you say?” She looked at me, pointed to the picture and goes, “Ro Ro. Brotha. Brotha Ro Ro Ro.” She motioned for me to pick her up and take her over to your picture so I did and she planted a big fat kiss on your little lips.  The tears started pouring down my cheeks and I had such a mixed reaction of total euphoria and wanting to run kicking and screaming out of our house.  It took me a few minutes to decide what it is that I was going to do.  Was I going to run away or just take a deep breath and embrace this moment of pure fucking amazingness that can only be explained as Poppy knows things that are not from this world?  She can’t even say Liam or Quinn’s name yet and the fact that she not only said your name, but knows who you are from a picture makes my heart go a million miles a minute.  As soon as Quinn and Liam got home, I grabbed Poppy and took them into your room.  I said, “Watch this.  Poppy, who is that on the picture?” as I pointed to you.  She goes, “Ro Ro.” Quinn started giggling uncontrollably and Liam didn’t quite know what to do.  “She just said, Ro Ro! Mom! Did you hear that?!” Quinn was jumping around with such excitement.

It’s been non-stop since that started a few weeks ago.  All day long all I hear, besides her barking like a dog is “Ro Ro Ro Ro. Brotha Ro Ro.” She is usually walking around carrying a picture of you, kisses it, and goes back to playing with something else.  She also studies the picture frame you are in like crazy, trying her best to open it.  It’s like she’s saying, “I know if I get this open, I can get him out and he can come and play with me.” I truly think that is what she thinks.  Oh, how I wish this were true.  I’m torn between loving all of this so much to sometimes it makes me sick.  As I said to your Sparkly the other day, “I’m going to break Poppy’s heart one day when I have to explain to her where Ronan is and what happened to him.  I don’t want to break her heart. How am I going to look my daughter in the eyes and have that conversation with her?” The thought of it makes me want to vomit all over the floor.  Why the fuck can’t her first heartbreak be over some asshole guy she will date when she is 16? Not over her beautiful brother that would have loved her so much, taken such good care of her and beat up the fuckwad who broke her heart? I like that story much better than the one I’m going to have to tell her.

I think I have to go now, Ro. Much more to say as always but my eyes are burning and bed is calling my name.  I’m forever sorry it is this way.  I miss you.  I love you.  I hope you are safe.

xoxo

photo 2

I wish I didn’t know what it was like to only be able to kiss your face through the pictures on my iPhone. I miss you. I hate this.

photo 6

 

Ronan. Every year since you left when Mr. Sparkly Eyes’ birthday rolls around, I always give him a card that I’ve made for him through my iPhoto with a picture of you on it. A few nights ago I was at my office working on my book, but I needed to take a little time out so I started to go through my pictures of you to make his card. It’s never an easy thing for me to do, but I feel like it would be important to you, so I carefully pick out a picture that reminds me of how happy you were while you were here on this earth. I usually just write really some simple words and I always sign it from the both of us. Ring, ring went my phone as I was doing this little project and I saw the word “Lover” popped up on my screen which is really Macy. Of course I picked up because I always do when she calls. She started chatting away about something and as I listened, I buried my head in my hands. I went to answer the question she had asked me, but she knew from the tone in my voice that something was wrong.

“Oh babe. What’s going on?”

“Nothing. Everything. I’m sitting here trying to make Mr. Sparkly Eyes’ birthday card and is it weird that I’m putting another picture of my dead kid on it like I do every year for him? I’m going through these pictures and I cannot believe he’s not here with me to give him this birthday card himself.” Insert more sobbing here.

I listened as Macy told me that it was not weird at all and we continued to chat for another half an hour or so until I stopped crying. She ended up making me laugh after she listened to my blabbing away and crying while she did her best to talk me through what it was that I was feeling at that moment. I didn’t finish the card that night, but ended up finishing it a few days ago instead. I have learned when something just isn’t feeling right, not to force it and I knew if I forced your card, it was going to be crap. I take my card making very seriously, especially when you are involved. I got the card in the mail the other day and of course, it is perfection and I know it will make him smile as I tell him the story behind that little picture of you and your happy face.

Things here are still really busy and there is not a lot of down time between Poppy and your brothers. I am trying my best to keep my head above water and have been making sure I get some form of exercise in almost everyday. Mostly it’s been consisting of hiking up Camelback Mountain a.k.a my church as they just opened back up the hard side (Echo Canyon) again. I have so much anger inside of me still and it seems the best place to take it out on is the mountain, otherwise I will just internalize it all and end up exploding one day. Sometimes I hike by myself, but I have also been going with Tricia again which has been really great. You know, going through what we went through with you was really hard on our friendship. I made some mistakes, had a lot of expectations, felt let down and at times, was really judgmental about some situations that I had no right to be judgmental about. I never meant to hurt her as everything I said was always just coming from a place of love, but I also know that place of love was a little harsh. She being your Godmother, had a really hard time with all of this and somehow we ended up getting off track a bit. Slowly we’ve started to fix some things and the beauty of this is we know that our friendship is always going to be here; even when it’s been a little quiet at times. We’ve had some really harsh talks, some really good talks, and we’ve both apologized as we know our friendship is worth saving. She is family and at the end of the day I know where her heart is and it has always been with you and it will always remain there. I didn’t go to her wedding which you know I am sad about, but it wasn’t for any reason other than it was in Mexico and I wasn’t willing to take Poppy with me and leaving her behind was not an option, either. I did give her something blue to tuck into her bouquet though which was a tiny piece of your blanket. It was hard for me to take the scissors and actually cut off a piece, but I needed something of you and us to be there with her. I wish it could have been the two of us there together and knowing the should have been’s of her special day will forever haunt me and make me sad; but the look of happiness on her face from the pictures I saw do take away some of that sting.

So, Poppy’s first birthday is right around the corner. April 8th to be exact. I don’t know how your baby sister is almost a year already as the time went by so fast. I’ve been trying to figure out what to do for her birthday, but the fact of the matter is I’m feeling overwhelmed about it. Do we just do something quiet at home or have a full on party? I keep going back to what would Poppy want us to do? In Poppy’s perfect world, I’ll bet she would want to just have a day with just a few people and about 100 dogs. She is dog OBSESSED! I told your daddy I’m starting a campaign called, “Poppy needs a puppy,” but he’s just not having it. Anytime she sees a dog, she starts barking and gets so excited that her little body just shakes and she usually ends up waving her arms so fast that she falls over. All day long she goes around our house, walking on her hands and feet, in a dog position and sticking out her tongue and panting like a dog. We don’t even own a dog so the fact that she is doing this from the memory of the dogs that she has seen, makes it even funnier. She is such a little character and loves to entertain us all of the time with her constant babbling, dancing to her favorite song which is “Get Lucky” by Daft Punk or any type of rap music. Shorty’s got game and seems to be developing quite the spicy little personality. I’ll get her birthday figured out soon, but something tells me it’s going to end up being very low key and sweet.

I’ve got to run little man. I’ll write more soon, but I have to get back to this book business. I miss you. I love you. I hope you are safe.

xoxo

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

photo 4

 

 

 

 

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

This slideshow requires JavaScript.

What birthday?? Let’s run a marathon instead, fucker.

177eefffe5fd3b0d8d42eae53eb5edf3

 

 

 

 

Ronan.  Today didn’t start out extra hard, but that is how it has ended up.  So much has been going on.  Too much, I suppose.  I made it through my birthday as best I could.  It it any surprise that I didn’t feel like celebrating?  I just wanted the day and night to be over as quickly and painlessly as possible.  I didn’t even let your daddy buy me a birthday gift and he is still talking about it, today.  He’s begged me over and over to please let him buy me some pretty earrings.  He knows if he goes out does it himself, I’ll just return them.  Pretty earrings won’t bring you back and that is still all I want.  NEWSFLASH PEOPLE, I STILL WANT MY DEAD SON BACK AND TIME HAS NOT MADE THE YEARNING FOR HIM GO AWAY.  I still beg for him every single day.  So sorry to disappoint some of you who seem to think because of this thing called time, that my wanting my son back will just disappear.  That because Poppy is here, she magically makes all my pain and sadness something of the past.  She doesn’t.  Yes, she brings back such wholesome goodness into our lives, but my pain is still here and just as present as before.  I sat with your Sparkly for a while on my birthday because it’s a tradition of mine now, 4 years in the making.  I sat across from him as he said, “What did I say, to make you cry on your birthday?” as he watched me wipe my eyes from behind my glasses. I told him that it wasn’t anything that he had said, that I just missed you so much and my birthday seemed to make me miss you that much more. He said he knew and how sorry he was and did his usual, I wish he were here, too. I came home and threw myself into bed for a few hours in the middle of the day and woke up to a pillow soaked with tears that I don’t remember crying, but the black mascara was evidence enough that they had been there.  I survived my birthday but birthdays to me will never be the same again as they just make me very, very sad.

After my very unbirthday, I’m not celebrating a thing, I had to get ready for that bitch of a marathon that I said I was running.  I didn’t really train at all except if you count going for some runs here and there, training. In my mind, I train for a mother fucking marathon everyday by just doing life.  I talked our Bri Bri into doing it with me as well.  She didn’t train at all either but I told her at 19 years old, you can do anything in the world, including running 26.2.  We got up that morning in preparation for the day.  I made us a little food, and we whispered in the dark about how excited we were to run this thing.  I took out a Sharpie and did my usual writing of your name everywhere I could.  I told Bri I was going to do her arms and she could do mine for a little extra running motivation.  I wrote, “Ronan” down one arm and of course “F U CANCER” down the other.  I handed her the Sharpie and told her to do my arms next.  I looked down at my arms after she was done.

RONAN was written perfectly on my right arm and I looked down at my left arm to see the word, “FUCKER” written in huge, black letters on my left arm.

“BRI! You wrote “Fucker” on my arm!” My whispers were no longer whispers.

“I know!” she said.  “I thought that’s what you wrote on my arm!”

“No! I wrote F U CANCER!”

We both were doubled over, laughing hysterically for a good five minutes before we could compose ourselves.  There was nothing I could do about it as the sharpie was not coming off and the car that was picking us up to drop us off, had arrived.  I decided just to roll with the word FUCKER down my arm and to see what added fun it might bring to the day.  Besides, cancer is the biggest fucker anyway.

We got downtown to meet up with my dear childhood friend, Laura who came into to town to run the marathon as she actually trained.  I had a sweatshirt on but told her the fucker story anyway to stop her from crying.  It is an emotional thing to do a marathon for the first time, and on top of that add the reason that you are doing it is for your childhood besties, dead son… well, game over.  Laura was officially a wreck but the fucker story definitely made her laugh and I think she had an even better time, calling me fucker throughout the marathon.  So did the spectators on the street.  The entire marathon I heard, “GO FUCKER, GO!!!” or “F U CANCER” or “GO RONAN!” as that is what we had on on the back of our shirts.  I got asked who you were and I always said, “My son.” I didn’t say, “My son who died of cancer,” because to me that is not who you are and I won’t let that define you.  I was doing pretty well in the marathon until about mile 17 and that was pretty much it.  I hit that invisible wall that you hear people in the marathon world, talk about.  I started walking, grabbed a gatorade that a lady was handing out on the side of the wall and chugged that thing like it was the last drink I was ever going to have.  I waited for my friend, Katie to catch up to me where we walked/jogged/begged for the finish line.  Bri met back up with me at mile 21 and somehow, we crossed the marathon line together, holding hands.  I’ve never been more proud of my sissy in my life.  She is such a little badass in training and I am so honored to be showing her the ropes.

I wanted to also take a second on here to thank all of you who supported me in the marathon by donating, volunteering, cheering or running yourselves.  It wasn’t just Ronan I thought about while doing this, but you all as well.  You kept me going when all I wanted to do was take the short cut, call it a day, and run back to my house.  I love you all so much for never giving up on me and for pushing me to do really hard things, just so I can remind myself that I am capable of overcoming all of the odds even on the days were I still do just want to crumble up and die.  You remind me to get back up and fight harder than I ever have before.  So thank you, from the bottom of my heart for keeping me going as I try my hardest to change this for these other kids who deserve so much better than what they are getting tossed their way.

Oh, back to today and how it was a really, really, really fucking hard day.  So hard, that I am too tired to write about it now, Ro baby.  It was just one of those days where I really felt like I had the wind knocked out of me because I just miss you so very much.  I have to get back to this book writing now.  I’ll try to check in with you in a few days.

I miss you.  I love you.  I hope you are safe.  Sweet dreams, baby boy.

xoxo

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

tumblr_mz1r6eehVv1r3e62yo1_500

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

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

tumblr_mwo8wu69XE1t08wpbo1_500

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.

Thank you all for your amazing hearts and spicy souls.

 

 

 

 

 

tumblr_mvrp05jTwg1qgolfvo1_500

 

 

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

xx

 

 

http://vimeo.com/78844347

No “Silent Night” singing to Poppy allowed.

tumblr_mo7ox65vVs1qc21zoo1_500

 

 

Ronan. I am currently watching your Poppy sister play in her crib. At almost 6 months old, she has still not spent a night alone. Is that bad? I’m not sure as I had all 3 of you boys in your cribs from pretty much the time that you came home from the hospital. Babies in our beds happened sometimes, but not all the time like we are doing with this Poppy girl. Your daddy has been saying lately that it’s time for Poppy to go in her crib. I do my best, “No way, never happening” rant. It usually goes a little something like this, “Kids who sleep in their cribs, die. I’ve sat in support groups where I’ve heard at least 3 stories of 8 month old babies who just up and die. She’s not going in her crib, to die.” The part about the stories I’ve heard are true, and although I’ll admit I’m being a little dramatic, I’m not about to be separated through the night from your Poppy sister.

My mind never gets to be naïve anymore and I am more than paranoid. Here is another example of how fucked up and crazy it is to live inside of my head. I was out to breakfast with Fernanda and Stacy the other morning and Fernanda was standing up with Poppy, bouncing her to sleep. She started to sing her “Silent Night.” You know, the song I always sang to you, before you got sick. I completely freaked out. “YOU CANNOT SING THAT SONG TO HER! THAT SONG IS JINXED! IT’S THE SONG OF DEATH!” Fernanda and Stacy both just looked at me like I had 8 heads. “Sing her Twinkle Twinkle Little Star, like you used to do for Ronan, instead!” Poor Fernanda started singing “Twinkle Twinkle” and Stacy just looked at me and rolled her eyes. I didn’t want to get into the whole song thing, but I remember when you first got sick how I told Tricia and Marisa something crazy about that song. “I always sang him ‘Silent Night.” Is that because he’s going to die and now the nights are going to be silent without him?” They both told me that was not the case, but here we are today. I know “Silent Night,” did not have anything to do with your death, but what if it was the world’s way of telling me you were actually going to die. These are the fun things I get to think about now. No “Silent Night” singing for Poppy allowed.

The Gold Party came and went and I still feel like I am recovering emotionally from it. It was beautiful and sparkly, just the way you would have liked it. I spent the night with my most favorite people, minus a few who couldn’t make it. It truly was such a beautiful night. The night ended with me saying to Stacy and Fernanda, “I feel like Ronan would really want us to jump in the pool.” After a little Stacy magic which meant talking to the amazing W people who were in charge of the event, that is precisely what we did, in our fancy clothes into the pool we went. It was me, Stacy, Fernanda, and your Fairy RoMo. We laughed, swam a lap, and I sat at the end of the pool and cried with Fernanda. I said things like, “I still can’t believe he is gone.” I’ll never get over the shock of this all or come to terms with any of this. This reality never becomes any easier no matter how much time passes by. Everything hurts just as much, Ronan. But in that pool swimming laughing/crying moment, I still felt so thankful for all the beautiful people you have put in our lives. I am a lucky, lucky girl in that regard.

I’m doing my best here, but sometimes everything I am doing, takes a toll. Besides just how much I miss you, I really miss just being able to be a mom and that’s it. I am in a constant state of feeling like I am being pulled in a thousand different directions. I am about to scream, “TIME OUT!!” and run away to New York. I know that is not the answer, but sometimes I wish it were that easy. I’ve been getting a lot of emails about this blog and my not writing as much. A lot of you are worried and asking questions like, “Is this the end of the blog, because you are not updating it as much!” I don’t think I will ever stop writing this blog, but it is going to have to go on the back burner for a while as my book writing, running a foundation, and being a mom to a new baby, takes up any free time that I may have. It makes me sad as this blog has been my outlet and my therapy, for so long. I promise to get back to it when I can, but for now, other things have to take priority. I used to do all of my writing really late at night, but it seems that I cannot get enough sleep lately. That means, come 9:00 p.m., I am sound asleep with Poppy. Until that 3:30 a.m. witching hour comes about, then I am up, but I am usually playing catch up on emails or foundation things that I HAVE to get done. This leaves not much time for blog writing. I promise to try to be a little better as I do miss this and all of you, very much.

My grief has also been being ignored, which is not good. How is it that I am too busy, to be still with my grief? I’ll tell you how.

A book

A new baby

A foundation

Having two 10 year olds who are in 3 different sports/homework/projects that are never-ending

Trying to be a wife

Running a house

Trying to keep up with friendships and maintaining them. Being a friend while being a bereaved parent is REALLY hard work. Luckily, the friends I have, who have stayed around, are seriously the best. They are not even friends anymore, as I consider them family

Having a brother who I’m in a constant state of worry about

Trying to get back into a good exercise routine as bye bye baby weight is in full effect around here because my skinny jeans are just sitting there, taunting me in my closet. I know, I know, priorities and this one seems pretty stupid, but it goes back to my childhood and dad who was always calling my mom not very nice names. I obviously have deeply rooted issues thanks to this.

That leaves pretty much 0 time to spend with myself and with my grief. I tried to get up to Sedona this weekend, to see Dr. Jo, but it just didn’t work out. So, what’s a girl to do because I know what happens when I ignore my grief. I turn into a complete basket case who likes to take too much Ambien. Wait, before you freak out, that was the old, really broken and shattered me. Not the new mom to a baby, I know I cannot do that anymore and I would never, ever even take one, let alone 5. I am going to make a game plan this week with Dr. Jo about how I can get back to just being still with everything, even if that just means I do it while I am hiking with Poppy. If that’s the only time I get to be still, it’s better than nothing.

One more thing. Thanks to the Phoenix Coyotes, we now have some money to be more consistent about doing the Candy Cart at PCH. We have decided to start doing it once a month, which I am super excited about. If any of you have any non candy goodies, you would like to send my way, that would be awesome. We also bring things for the kids who cannot eat so they do not feel left out. Things like toys, books, coloring books, stickers, crayons… you get the idea. Everything must be new and not used. Please send to the P.O. Box where all of the foundation things get delivered. The address is below.

The Ronan Thompson Foundation

P.O. Box 44935

Phoenix, Arizona

85064-4935

Thank you all so much for bearing with me during this quiet time and respecting that I am trying to do my best, I am just feeling a little overwhelmed right now.

It’s almost 9:00 which means I’m done for the day. Time to curl up with this Poppy girl.

G’nite Ronan. I miss you. I love you. I hope you are safe.

xoxo

 

 

Nobody puts Ronan in a corner

1376999334510279

 

We are seriously taking over for the month of September, which is childhood cancer awareness month. I am going to post an update of events soon, but for now you must check this out.

It is seriously awesome. I freaking love me some Patrick Swayze. Thank you, FilmBar Phoenix for being so rad and choosing our foundation to support.

xx

  • Instagram is my BFF

    Run the night. #ronan #fucancer #nike #runthenight #sundays #runningislife #washingtonchristmas Sunday things. #ronan #fucancer #portland #pnwisbest #washingtonchristmas #coolkids #quinnputonyourcoat @quinn.thompson24 Jingle Bells, we are fun!! #ronan #fucancer #washingtonchristmas @quinn.thompson24
Follow

Get every new post delivered to your Inbox.

Join 23,879 other followers

%d bloggers like this: