My name is Kate. I am 9 and lucky enough to not have cancer. I know what I want to be when I grow up, but I hope that job isn’t available anymore when I’m a grownup. I want to cure cancer and help little kids get back to normal life! You might wonder why a kid without cancer would care so much about it, so I will tell you…
When I was six, I learned about Ronan and Maya Thompson and my whole life changed. Unfortunately, I could only know Ro through his mama’s stories about him because he died. My mom is my best friend – just like Ro & Maya were best friends. My mama read me Maya’s list of “How to Live Like a Rockstar” and we have been doing that ever since. I didn’t want mamas to have to feel like Maya feels every day because cancer took her sweet spicy monkey away.
My friends and I do everything we can for kids with cancer. We dance to raise money, we decorate pillowcases and posters to brighten hospital rooms, we host lemonade stands, we wear bracelets, we write their names in the sand on beaches, we release balloons on their birthdays and so much more. We do all we can, but we need the help of powerful adults to put big smiles on kids’ faces. Kids are supposed to be in parks playing with their mamas and daddies, not tucked away in hospital rooms. PLEASE HELP US.
The other day, I gave away really good lemonade and lollipops at our park to raise awareness about Childhood Cancer Month in September. I sat down with two volunteers from Camp Sunshine who wanted to hear all about why I was giving away lemonade. I told them 46 kids are diagnosed with cancer every day and that they are treated with medicine for adults. I told them every fact I could remember. They promised to tell more people. Then there were people who never even stopped to get my lemonade or one of the lollipops. It mad me really sad – not because I was a kid GIVING AWAY lemonade, but because that was one more person who didn’t know how big of a problem childhood cancer is and how much these kids need help.
If I could, I would go to companies who make medicine and ask them to help, but I’m a little girl. So, I have to do what I can and be sure to get great grades so I can go to medical school and fix it myself. My mama tells me to ask adults for help when I can’t do something by myself. So, for now I am asking you to help me tell more adults who can help. I live in Boston, but I love New York – everything about it. During my first trip to New York, you were lit up pink for breast cancer. And I just saw you lit up green for the Ninja Turtles – my friends love them! You have such a beautiful building and I hope you will light it up GOLD. That will put smiles on the faces of kids, mamas and daddies everywhere!
I know you are very busy. So, if you take one thing from my letter, please take Maya’s advice on living like a Rockstar. She said, “Trust your instincts. Listen to your heart as it is more powerful than your mind.” I hope your heart will show you the power of fighting for kids with cancer.
There is something you need to understand about childhood cancer and those affected. And there is something you need to understand about social media. We don’t fight alone. Nobody does. A stranger’s battle becomes each of ours. We are in it together. We all talk to each other, and we know it was more than one individual who requested you to light up gold. We know. At least two nonprofit organizations have filled out the form on your website, in hopes of seeing your building light up gold for one night next month. One night is all we ask. We know you have gold light bulbs. Sure, individuals have requested for you to do the same, and perhaps you feel justified in denying them, and perhaps you are, in fact, justified. But when two nonprofit charities have diligently filled out the form, and sent it in, and they are still refused, what then? Are we supposed to just give up? That isn’t how we operate at all. We fight daily for our kids, for our families, for the other kids we know who are fighting for their lives, and yes, for ourselves. Because some of us, me included, are survivors of childhood cancer.
And we all are friends on social media platforms. We all talk to each other. We know who has filled the form on your website. We know parents who posted pictures of their sick children on your Facebook wall, and those posts were promptly deleted by the person who who administrates the page. We just wanted you to see what you were saying no to. We just wanted you to see who you were saying no to. We wanted you to see the babies you are refusing to help. But you just block everyone. Why? We are just going to keep asking. I think all of you know that.
In your statement, you say you provide lighting for World Cancer Day in partnership with American Cancer Society. That is pretty amazing. But did you know that American Cancer Society only gives a penny or less out of every dollar they receive to pediatric cancer? There is a reason why we want you to go gold next month. Pediatric cancer is grossly underfunded. It gets less than 4% of federal funding and there are more types of childhood cancer than you can count on your fingers. On both hands. Everyone in the childhood cancer social media community and in their orbits knows about childhood cancer. Most people step up to help. Other people have their own causes, their own problems. But for us, this is it. This is worth fighting for. Would you not say your own children were worth fighting for? Would you not do anything for them? Their lives depend on you. Sick children’s lives depend on us, on awareness, on action.
That brings me to what you said about people getting frustrated and wishing cancer on you. First off, I doubt that was what really happened. Nobody in this community would ever wish cancer on somebody else, even someone they don’t get along with very well. Cancer is a horrible nightmare. If you had gone through it, either yourself or with a loved one, you would know that. If someone within our community is “abusive,” as you say, then it is out of sheer frustration and has nothing to do with you personally. We are all human. We are all running a million miles a minute and getting nowhere fast. You said no to Thumbs Up for Lane Goodwin Childhood Cancer Foundation and you said no to The Ronan Thompson Foundation. We have been asking for at least two years. If we get a little frustrated, who are you to blame us, really? Kids are dying every single day all over the world, and these are battles we can’t fight for them. But the fight for awareness and funding? That is what we can do. We will keep coming. We will keep asking. And that is a promise.
Stage IV neuroblastoma survivor
Diagnosed at 15 and a half months
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.
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.
Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally. You always bring me the rain when I am the saddest. I was up on and off through the night. Waiting for that 3:25 a.m. time when you left this world. I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me. No screaming and crying fits allowed when a peaceful baby is sleeping beside you. I sent an email to Sparkly instead and screamed and cried to him. FUC. I hate cancer.
Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it. We talked a lot about life, loss, this cancer world and how wrong it is. I like spending time with her as not only a doctor, but on a personal level as well. I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you. One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere. It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.
Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.
Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.
Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.
It’s still pouring down here. After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons. Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself. Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.
It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.
Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.
After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?
Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.
Ronan. If I don’t write to you tonight, my head might explode. Today was one of those days where I cannot fall asleep because my head is spinning. There is so much going on here, that I can’t even see straight. What have I been doing? Running around like a chicken with its head cut off. September is right around the corner and we have so much going on and coming up that I don’t even know where to start, so I’m going to start somewhere completely random. Your brothers started school last week. Did I already tell you that in an earlier post? I cannot remember. They started the 4th grade. I can’t even believe that as the time has gone by so fast with those two. Of course, on their first day of school, I dropped them off and sat and watched them as they walked into school together, from my car. My heart broke into thousands of pieces not getting you to watch you walk into school with them. Would have it been kindergarten or first grade for you? Not sure, because of your almost summer birthday. If you would have survived cancer, I’ll bet we would have waited to start you in kindergarten until this year, so you would have been on the older side. I never thought I would be begging for the side effects of treatment from you cancer, but I would have given anything for those problems instead of having you just dead.
Just as I was sitting there, watching your brothers, I saw an old mom friend of mine, walking her little boy into school. An old ghost mommy friend as I like to call them, because at one time they existed, or did they? Sometimes I think they may have been just a figment of my imagination.
Crap. I know that lady, I thought to myself as I watched her walk her new kindergartener into the school. But I can’t place how I know her. Did I know her from my time with Liam and Quinn when they were at their preschool or did I know her from when you were there? Was she a Liam and Quinn kind of mommy friend or and Ronan kind of mommy friend? A ghostly past of my preschool mommy friends who went away after you got sick and died and who never looked back, or did I only know her during my blissfully happy days when I lived in happy land and childhood cancer did not exist. I run into those ghosts of my mommy past sometimes. Some days, I run screaming the other way. Some days, I smile and pretend like everything is o.k. or like my feelings are not hurt at all for the friendships I thought I had, but it turns out it was not as true as I had once thought in my mind. At the end of the day, I’m o.k. with it all though. The Fernanda’s, Stacy’s, Macy’s, and Mandy’s make everything more than o.k. in that department and I know, the one’s that stuck and fought for me and you… well, I am SO beyond lucky to have them as they rock my world every fucking day.
This week has been the kind of week where I am saying yes to everything that is thrown my way. Yes to the Gold Weekend in September. Yes to the Spirithoods founder wanting to come out here to meet us and film a documentary next week. Yes to helping Jim Fry drum up some press for his crazy kick ass bike ride through the Pyrenees. Yes to the interview where I will be featured once again in the Phoenix Magazines Movers and Shakers of the Valley. Yes to Liam and Quinn I am super mommy and can take on the world while helping you with your massive amounts of homework and whatever else you need. Yes to everything Poppy, of course. Yes to running on my very bummed out hurt knee that I obviously did something to over the summer, but I am choosing to ignore it because as I told Woody tonight, “If Ronan can go through cancer treatments, I can run on a fucking hurt knee.” Yes to everything while still making time to write this book which leaves me with little time to sleep or eat for that matter.
I can’t sleep and the whole eating thing is just getting in the way of what I am doing, so I’ve decided to take a break from that as well. I work best on fumes, anyway. Will I crack, will I break, will I have a massive super meltdown? I really hope not until after at least September. I’ve got too much to do as of now.
I’m also a little sad this week due to more than just your death. Remember that crazy ass stalker, Mandy Bee who swooped into my life like a Tasmanian devil? Who never claimed to be anything but a crazy stalker who just wanted to be my friend and who did things like drop off candy and leg warmers at my front door until I could not longer say no to becoming friends with her? What can I say, she learned my weaknesses early on. I mean candy AND leg warmers? I didn’t stand a chance. So, I let her into my life sometimes just a little and sometimes a lot. Sometimes I felt overwhelmed with amount of love she wanted to shower me with, so I would pull back a little. I often didn’t feel like I was worthy of the love she was wanting to give me. Well, that crazy ass bitch moved right down the street and right when I was starting to become just as obsessed with her, as she is with me, she pulled the rug out from underneath me and is moving back to Canada. WTH, Ronan? That is not being a very good stalker, if you ask me. Mandy has become my side kick, my partner in crime and I’ve gotten really used to having her around. I am kind of heartbroken. I was texting about Mandy moving back to Canada with Stacy the other night. She said to me, “You know, all Mandy every wanted from you was your friendship. Nothing else.” I know this. It was never a friendship built on, I’ll scratch your back if you scratch mine. It was always, I’m going to scratch your back, even if you don’t let me, I’m going to do it anyway, while jumping out of a plane and skydiving with you. Mandy never had alternative motive. The day I met her, she announced she was fucking crazy and never pretended to be anything but that. I’ve gotten quite used to that crazy and I love it. So yeah, I’m a little more than sad about it but once you are sisters in this world, you are sister for life. I know she won’t ever be too far away and she will be back her often, which will help to soften the blow just a little. I’m still super sad about it though and I really think the whole situation, sucks balls.
Poppy, Poppy, Poppy. Somebody today asked me if we had started up “Mommy and Baby” classes yet. I looked dumbfounded and said, “Uhhhh, no. Unless you count taking her to every single foundation meeting with me as mommy and baby time.” Crap. Aren’t I supposed to be starting music classes with her or something like that to get her “socialized?” I’m sure that’s what I was up to when I had you, Liam and Quinn at this age. Maybe 4 months is a little early, but I’m sure I was doing it at around 6 months. Whatever. We do take music classes every day and they are called Taylor Swift is rad. We sing and dance to her songs and Poppy likes it best when I lull her to sleep with them. Those classes with just the two of us are better than anything I could ever pay for.
Alright, little man. This is all for tonight. I’ve got to try to turn my brain off. I miss you. I love you. I hope you are safe. G’nite, baby boy.
I just want to take a minute on here and say thank you to all of you. After being away for the summer, I came home to piles and piles of mail, gifts for Poppy, checks for the foundation, and I even got glitter bombed after opening up a box. You all make me smile, laugh, and cry on a daily basis and although I can’t write each and every one of you thank you’s… please know that I am doing it here, and I say thank you to you all about 100 times a day in my head.
There are so many amazing things going on. If you have a second, please read about what the amazing Jim Fry is doing below.
If you have the means, please donate to his fundraiser. Every little cent helps. If you don’t have the means, please spread the word for us. What Jim is doing is inspiring and so moving. Even with all of his determination, he knows it is nothing compared to what these kids go through and that is the most moving thing of all.
I feel a movement happening in the world. One that I am so touched by. I’ve literally received thousands and thousands of emails and letters from not only adults everywhere, but kids as well. Kids who I swear are going to change this world of pediatric cancer. They are holding fundraisers for Ronan, starting clubs at their schools, writing reports about the lack of awareness out there, doing amazing school projects about Ronan’s foundation, writing songs for him, doing their birthday parties and instead of gifts they are asking for donations instead, etc…. I live for the youth of America. I live for these kids who are going to grow up to do amazing things all because of a little boy they learned about because he will never get the chance. And they know that is so wrong and how it could happen to anyone; even them. They aren’t scared and running the other way. They are being proactive about this very broken world and to me, the mother of a child who died from this… that means everything.
I got sent a little poem from a 13-year-old girl named Eugenia. She had a class assignment and it was to describe a room and explain how the objects in the room say things about the person living in it. She chose to do it about my bedroom. The poem is below.
The light on at night illuminates how she doesn’t sleep well thinking about how she feels it’s her fault
The athletic shoes next to the door jog the idea that she runs to clear her mind
The pictures of her son all over the room visualize how they were close and that she misses him like crazy
His little bald head in the photos discloses that his life was a hard one even though it was short
His toys on the floor play out his innocence; how he was taken too young at 3 years old
The boxes of tissues whisper about how she spends every day crying over him
The spot on her bed between her and her husband portrays that he would sleep in their bed
The urn on her night stand murmurs that they keep him close and never let him go
The necklace around her neck filled with some of his ashes witnesses how she needs to keep him close to survive
The letters of apologies opened and unopened spell out how many loved ones he had
The bracelets with his name on them tie up the fact that they are trying to spread the word of this horrible disease
The computer on the floor next to the bed reminds us how she needs her blog to express her emotions of grief and pain and tell his story
The sonogram under the pillow wet with tears of joy and despair portraits how her new baby will be a girl; he always said he wanted a little sister
The deep sad look in her eyes sends the message to us that even on the happiest of days she will always be sad because her life is incomplete without him.
For Maya and Ro. Always for Ro.
This 13-year-old gets me better than most adults. As I read the words above, the tears just poured to the floor. I thought it was so heartfelt and beautiful. I am so moved by this younger generation of kids and the way they are helping move these mountains. Thank you, E. Don’t let anyone every dull your sparkle;) You are making this world a better place.
I’ve got to run now and work on this book.
I hope you all are well and please know that I know, that I would not be where I am today, without you. Thank you for helping me to fight for my little boy so much so that his name will never get lost.
Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that. About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.
It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.
We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.
On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.
“Hey, do you guys want me to move back in with you?! That would be so fun!”
They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.
“I really would. You guys are really awesome roommates.”
I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.
Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.