Posted by rockstarronan on March 24, 2014
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.
Posted by rockstarronan on March 24, 2014
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.
Posted by rockstarronan on January 22, 2014
Ronan. Is this a joke? I’m sitting at my computer, watching my Twitter feed go crazy about the White House being lit up Pink for October for Breast Cancer Awareness month, while they did nothing in September for our kids. Even after we got over 25k signatures for our petition to light the White House Gold, it didn’t seem to matter at all. What we got was a big fat slap in the face and some generic letter basically saying, “We care, but we really don’t care.” When I got our letter back, I was disappointed, but now sitting here at my computer and looking at the White House being pink, I am just straight pissed. I am not pissed that the White House is pink- good for them as this issue has been being worked on hard for a long time now by a lot of people with a lot of money/power/brains, etc…. What I am broken hearted over is the fact that WE (including all of you) worked our asses off to get over 25 thousand signatures to ask for the same thing for our kids, and we were ignored as if our kids, do not matter. Like my son, didn’t matter and doesn’t deserve the same awareness that breast cancer does. Every fucking person on the face of the planet knows what the pink ribbon means. Nobody knows what the Gold ribbon represents and this would have helped the cause of childhood cancer, so freaking much. This is not a one cause is more important than the other issue. This is I just want equal rights for these kids issue. Kids who are too little to have a voice of their own, so we as adults have to have it for them. I feel like we are screaming at the top of our lungs, but are constantly being ignored. This is what I am pissed about and please do not come on my blog and turn this into something else. I would have given up my life in a heartbeat if it would have meant Ronan would have gotten to stay here and live. I would have taken his cancer in an instant, no questions asked. I’ve had enough time here- he did not deserve to not be a child and live a full and wonderful life. I will always wish it could have been me and not him.
I don’t understand why this is even an issue, because it should be taken care of by now. How many more kids have to die? I don’t understand why everyone in the world, isn’t fighting the hardest for the lives of these kids. I don’t understand why such a simple thing, could not have been done. I don’t understand how everyday, kids are diagnosed, dying, going through wars that they shouldn’t have to go through, while being called “hero’s,” when all they want to do is have the chance to grow up, be normal kids and live long and healthy lives, like they deserve. I don’t understand why kids are being robbed of this and nobody seems to care. Things could change if everyone would pull their heads out of their asses and stop sweeping this issue under the rug. I don’t ever want another mother or family to go through what we have gone through, but this is just going to continue to keep happening if the lack of awareness and lack of funds for childhood cancer, do not change.
While I was watching my Twitter feed blow up, I decided to go and spam the White House Twitter with “Where’s the GOLD for our kids,” etc.. etc… etc… Then I started browsing the First Lady’s Twitter, which is what got me to, “Is this a JOKE,” in the first place. Did you guys know that apparently there is an epidemic running rapid through the world about people not drinking enough water? OMG. I had no fucking idea how out of control and devastating this is. Have I been living in a hole somewhere? It is such a massive problem, that the First Lady has started a whole campaign about it. She says, “Drinking water is a choice that everyone can make.” She is totally right. You know what is not a choice? A 3-year-old getting cancer.
A 3-year-old, getting cancer and having his head cut open to remove a tumor that has spread to his left eye is not a choice. He also doesn’t get a choice regarding all the ADULT CHEMO he is going to have pumped through his body. Which causes nausea, bloody noises, fever, loss of appetite, mood swings, weight loss, fatigue, depression, and loss of hair to MAYBE save his life. And if that works, there is also another MAJOR surgery to have his stomach cut open to remove the mass that originated in his belly. If he gets through that, next is a stem cell transplant to go through, and YAY also radiation and antibodies! WHEW! But I sure am glad he never had to worry about that not drinking enough water problem! But he may have had to worry about it, had he lived long enough to do so. But he didn’t because cancer murdered him. He was robbed of his future as thousands of other kids are being as well. At least we, his family, are all left here to drink our water though. I will make sure that Liam and Quinn get an extra glass of water tomorrow, just for Ronan’s sake. They will drink an extra glass for him because he is not here to do so himself. Thanks for taking on this issue, First Lady.
Fucking bollox. I did not start this to bash the First Lady as I am sure she is lovely and she picked an issue that was easy for her to take on. But to a cancer mom, this is beyond offensive. Childhood cancer is a war and it cannot be won alone without the support of our government and leaders. The fact that childhood cancer only receives 4% of U.S. federal funding, gives me nightmares. As if having a dead son doesn’t give me enough nightmares, now I get to think about this while I’m awake during the day and also while I sleep. I guarantee you, if the President and First Lady actually stepped foot onto an Children’s Oncology Floor, this would not be acceptable to them. If every person was required to step foot in a hospital, on this floor, we would not be dealing with lack of anything in the childhood cancer world as I fully believe this real life epidemic, would be issue number one. Our future generation of great amazing leaders are dying. I know had Ronan been given the chance to grow up, he would have grown up to change this world for the better. Look at all he is doing and he is dead. If that doesn’t say something, I don’t know what does.
Below is the “We care, but don’t really care,” letter from the White House. Thanks for the awesome photo op though, Prez. I really enjoyed seeing how much you care.
Ronan. As always, I miss you so much. I miss you. I love you. I hope you are safe. If they won’t change this, we will. I promise you that.
Fighting Pediatric CancerBy Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public EngagementThank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.President Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.
We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.
In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more atHealthCare.gov.
So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.
Presidential Proclamation: National Childhood Cancer Awareness Month, 2013
Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.
Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.
My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.
All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.
Posted by rockstarronan on October 24, 2013
Spicy Monkey Spirit Hoods are back in stock as of 3pm pacific time. The first run sold out in barely 90 minutes, so if you want one…don’t wait! Even if you don’t have kids, or want to wear one yourself, DONATE one or 10 to a children’s hospital. Bald little babes everywhere, should have one of these.
We have to thank Alexander and Shayoon and everyone else at Spirit Hoods for this incredible experience! Seeing how enthusiastic and supportive everyone has been about the spicy monkey hood reminds us of how Ronan would have been so beyond excited to see it. Thank you all so, so much. This is honestly a dream come true.
Posted by rockstarronan on October 23, 2013
Because we have had such a huge request for more tickets, we have also decided that we will be selling a limited number of tickets at the door on the night of the event. If you don’t want to risk not being able to get in, you can buy tickets at the link below.
See you all, Friday night!!
Posted by rockstarronan on September 23, 2013
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.
Posted by rockstarronan on August 14, 2013
Ronan. 2 years ago today, April 23rd, I went to Hell. I’ve been to Hell a few times in my life and it’s not the place that people think you go after you die and you have lived a life of sin. Hell to me is right here on earth. Hell to me are the things I have experienced while living; half alive. April 23, 2011, I went to Hell. It was your last scan day at Sloan Kettering. Fernanda was with me. I remember every detail about that day as if it had just happened yesterday. The waiting in the waiting room for Dr. Kusher to come out and read us your results. Watching my friend, Doriet, howl like an animal in that same waiting room as she had just been given the news that there was nothing left to do for her daughter, Esther. Grabbing Doriet as she walked by and squeezing her so tightly as I whispered in her ear that we would find something or someone to help. Looking at Fernanda and saying to her, “They have to walk out of here having just being given the news that there is nothing left to do for their daughter. How are they going to leave here? How can that just be it?” I had no clue that 20 minutes later I would be in the exact same situation.
Fernanda and I sat and waited. Dr. Kushner came bursting through the doors, breezing right past us. Fernanda whispered to me, “There he is! Ask him!” I watched his body movements, the way he avoided eye contact with me and rushed right past me as if he didn’t see me waiting there. I knew he did. My stomach dropped to the floor. My name was called to come back and get you as you were waking up from your anesthesia. I couldn’t wait to scoop you back up into my arms, safe and sound. You were groggy, but so happy to see me. You were upset about the bone aspirations in both of your little hip bones asking me why I let them do that to you. I rocked you out back out in the waiting room to try to calm you down. Then the sign of all signs that everything was about to come crashing down. That damn necklace. My “lucky,” necklace that I had worn religiously on every single scan day, broke in two and went falling on the floor. I watched the necklace fall to the floor in slow motion. I swear time stopped. “Dr. Kushner will see you now!” we were told. I grabbed you, Fernanda followed me, and off we went. I felt like I was walking the plank of a pirate ship with a big sword in my back, waiting to be dumped into a sea of blood hungry sharks.
Dr. Kushner was waiting to see us alright, but not in the way that I wanted. He paced back and forth like a caged animal. He couldn’t or wouldn’t look me in the eyes. “The treatment. The treatment didn’t work.” I sat there, shaking, as you played on the floor with some cars or something. I don’t remember much after this except saying to him, “O.k. well, I know you have a plan, because you said you wouldn’t give up on my child, so I’m going to go back to Phoenix, until you figure out what is next.” He called your daddy too at some point. I don’t remember what was said. I remember feeling like my legs were cement and I couldn’t get up off of the chair. Somehow I managed. I also managed to give that Dr. Kusher a hug and say “Thank you. You are a good man.” I said this to a man who was too much of a coward to give me the decency of looking me in the eyes and just simply telling me he was sorry. I picked you up and off we went, somehow managing to make it back to the Ronald McDonald House to pack up our entire life that we had created in a matter of hours to hop on the soonest fight out of there. I did none of this. I threw Coconut Water at the wall and watched it explode everywhere and I told you we were having a Pop throwing party as I sat on the floor with you and Fernanda and we let all kinds of soda and water explode everywhere as we threw it against the wall and all over the floor. You thought this was funny. I did too as I lost a piece of my mind that day, never to get it back again and I honestly don’t miss it at all.
I sat a the basement somewhere while Fernanda stayed with you and let you chase her about. I screamed and cried into the phone to our Mr. Sparkly Eyes. He could barely talk as he know nothing was going to calm me down. I remember him just begging me to get it together, so I could get you home and he promised me we would go from there. I think I said the words, “No,no,no,no,no,no,” over and over again as I could not even form a sentence at this point. Valium somehow came into play I think. The next thing I knew our 10 suitcases that came out of thin air were packed and we somehow managed to get a late night flight out of New York home to Phoenix. Again, not me. That would be the magic of Fernanda. Only she could somehow manage to orchestrate something of that magnitude in the middle of the biggest shit storm of both of our lives. Somehow we survived scan day from Hell to be plopped back to Phoenix. I remember nothing after this. I don’t remember the reunion with your daddy and how the fuck that conversation went. I don’t remember getting home to our house and explaining to your brothers what was happening. It’s as if my memory of the next few days has been erased. I guess that happens when you suffer from something as traumatic as what had just happened in New York. Part of the PTSD I suppose.
Fast forward and here I am 2 years later having survived one of my many trips to Hell and back. Here I am having spent all day today, thinking about you and what I was doing 2 years ago as I was still fighting with everything I had, to save you. Today, I spent much of the day like I have been since your sister was born. Rocking her. Snuggling her. Feeding her. Taking care of her. Listening to my head as it screams for you, but the screaming is a little less now that she is here. Wondering if your sister is you, reincarnated. Is that a real thing? I don’t know, but it crosses my mind. What if it were. How would I feel about that, if it were? Would it make this pain, any less? I don’t know. It’s because of that dimple of hers that I can’t stop thinking of this. That secret dimple that you had on the right side of your face down by your chin. The tiny little dimple that only showed up when you smiled. I think that she has it too and it is freaking me out and making my mind think insane things like, “What if this is Ronan’s way of coming back to me because he saw how much pain I was in and he couldn’t take it anymore so he came back as a baby girl…” You know me and my imagination… wild and crazy. Then there is the other little voice in my head saying, “Don’t be crazy. This is Poppy not Ronan, but she is here to save you too, but in her very own way. Her magical, special, Poppy way.” Whatever the real answer is, Ronan, I’ll take it. Because either way is a gift from you. I know this.
Your Nana is here and it has been wonderful. She is so helpful to me and I love watching her bond with your sister. She is such a good Nana. It is all bittersweet, but I know you would want it this way. You would want us to be happy as much as we are able to, without you here. Tomorrow, your Fairy RoMo is popping into town, just to take a peek at your sister and meet her god-daughter. I am so beyond excited to see her and introduce the two of them. I know it will be love at first sight. I only wished she could have met you as well. Tomorrow, I feel like she will be meeting a piece of you and it is going to be such a beautiful thing to see. Your little sister is one lucky girl to have a Godmother like her as she truly is one in a million.
Alright little man. I’m sorry I haven’t been writing, but things have been busy, yet calm. We are all truly just soaking in this little window of time with your sister as I know how fast the newborn stage goes by. She is a dream and is such a good baby. We are all amazed at how she doesn’t cry. Ever. She is the most peaceful little thing. I guess somebody must have told her how badly we were all needing a little peace in our lives. Thanks, baby doll. I miss you. I love you. I hope you are safe. Sweet dreams
Posted by rockstarronan on April 23, 2013
Ronan. It’s normal to sit partly naked on a table at your OBGYN’s office and cry, cry, cry while waiting for her to come in a check your cervix, right? I was really trying to avoid this today. I had my nose busily buried in a book that I was reading on my iPad, but somehow it was as if my hands were not my own anymore and the next thing I knew I was swiping my fingers across all of my pictures on my iPhoto only to be staring at you and your big blue eyes while I waited for Dr. Schwartz to see me. I can usually do this and be o.k. I mean, I look at your pictures all the time, but today looking at them left me with tears streaming down my face and wet spots all over my iPad. There you were in every picture, smiling your beautiful smile at me while I traced your mouth with my little pinky as if I were actually touching you. I listened to the voices screaming in my head that it couldn’t really be this way, that my darling, sweet boy, didn’t really die of cancer. The flashbacks began. The ones that forever haunt my mind. The way I watched cancer eat away at your little body, mind and soul. The pain that set in during your last week or so that I could not rub or kiss away no matter how hard I tried. Your sunken eyes, bloated belly, cold lips and stiff little legs. The pain that I now feel every single day and the sadness that never goes away. Now the harsh stares, un welcomed judgment about the grief that I carry around with me. The grief that nobody will ever truly understand but they sure can pretend as if they do while voicing their opinions about it while judging away. The baby sister that is now almost here that will supposedly heal my broken heart according to the world around me. It’s like the outside world thinks she is the magic pill that I’ve so been searching for but will never actually swallow no matter how hard they try to shove it down my throat. Those who know me well, understand my truth. Those who know me well, know that no amount of time, love or even a new human being will ever take away my pain of having to live my life without you and they don’t judge me because of that. It only seems to make them love me more. Those are the people I surround myself with. The handful of people that are not afraid to be a silent witness to this pain and only fill us with unconditional love. They lift us up not bring us down with their words of kind compassion, non-judgemental stares, and they are just so proud of us for still being here and being a loving family to one another. There are no expectations, no whispers of he’s in a better place, or she is doing everything wrong. I hear the whispers and I am very aware of who is doing the whispering. It’s like I have a sixth sense for those things and I have learned that the whispers will always be there, but I have a choice of whether or not I hear them. I mostly choose to tune them out because I know at the end of the day the proof is in the pudding and the pudding being your daddy, your brothers, and the amazing friends that have become family. Not to mention your Nana and Papa Jim. I always say I swear I could murder someone and your Nana would still say, “I am so proud of my daughter.” I know what it is like to be unconditionally loved, thanks to her. She has taught me a very valuable lesson through all of this. One that I could never repay her for or say thank you enough for. That’s the great thing about your Nana, too. After everything Ronan, after all of her love, support, strength, sadness, help… she would never look at me and say, “You owe me for this for all I have done for you. Or you hurt my feelings because you don’t pick up the phone. Or you are being selfish, rude and need to get over this.” She would never make this about her in any way shape or form. She is absolutely the most selfless person on the planet and I only hope that I too, am silently following in her humble footsteps. I know how much she misses you and misses me. I hope one day that I can start picking up the phone more like I used to when you were here. I am thankful that she does not take any of this personally because she knows that I am just doing the best that I can and to her, that is more than enough.
I cleaned myself up before Dr. Schwartz came into the room. I know I looked like a bloody mess as my entire face was blotchy and red. I was quiet when she came in to see me today and asked me her usual questions and went on with her exam. I told her how I have been getting sick again. Mostly during the middle of the night the throwing up starts. I won’t ever know if it’s your sister or my body’s way of reacting to my grief. I have a feeling it’s a little of both. She checked my cervix and measured my belly which is still measuring a week ahead of time. “O.k. it’s not going to be much longer now. You’ve dilated quite a bit. Let’s put you back in a room to see what’s she’s doing and watch your contractions.” I headed back out into the waiting room to wait for a room to open up. There was a girl out there, waiting with her little boy. I tried my best to avoid eye contact, but she smiled so I of course said hello. I was a wreck and listening to the little boy call out, “Mama!” was enough to make my eyes well up with tears as that is what you always called me. He was so cute but I refused to look his way as I knew what was going to happen if I did. I was doing a pretty good job of reading my book until his little car came flying at my feet because he had thrown it across the room at me. This made me laugh as I bent down to pick it up as it is so something you would have done. I returned the car to his mama and she shyly looked at me and said, “You’re Maya, right?” I smiled and said that I was. The girl told me how she has been reading my blog forever and how she actually saw me a couple of weeks ago out and about but didn’t want to come up and bother me. We sat and chatted for a bit while I tried not to get lost in the blue eyes of her little boy. She could not have been sweeter and told me how meeting me had made her day. I gave here a ziplock bag full of your bracelets that I just happened to put in my purse this morning. I knew there was a reason that I packed them. I don’t always leave the house with a bag full of your bracelets, but today I felt like I might need them. I’m so glad I was right:)
I finally got back to the room where my contractions were monitored and your Poppy sister was, too. Dr. Schwartz came in and read the results and told me due to my contractions, she wouldn’t be surprised if she saw me before Friday which means I could have your Poppy sister at any time. I thought I was ready for this but I think I’ve changed my mind. I’m not ready and I’m bloody scared as hell. The only part of me that is ready for this is my body. My tired body is more than ready to have this baby girl. My heart and my mind aren’t so sure. Can I do this doubts fill my head. Your Sparkly promised me that I indeed, can do this. I know he is right, but it doesn’t seem to be making things any less scary or sad. My excitement for your sister seems to have been put on hold due to the anticipation and emotional roller coaster of tears that will not seem to stop. I can’t seem to stop thinking about the fact that you won’t be here to hold her, love her, kiss on her the way I know you would be doing if you were here. I try to calm myself about this by letting my heart remind me that although you are not here, you will forever be watching over her, guiding her and protecting her in ways that only you can do. I would give anything for you to actually be here, teaching her all sorts of naughty things and causing all sorts of trouble but as I’ve learned the hard way, beggars can’t be choosers.
I’ve got to run, Ronan. Your Bri Bri aka, my little sissy is in town for orientation at ASU. Can you believe that? I don’t know where the time went as it seems like just yesterday I was bouncing her on my hip, watching her grow up and bounce Liam and Quinn around and then, you. Now she is all grown up and is finally going away to college to ASU. I’ve listened to her talk about ASU since she was 8 years old and how she would go to school there someday. That someday is almost here and I am so excited to have a little piece of our family in Arizona with us. Your brothers are thrilled. I know she is nervous but we are going to take such good care of her. I so wish you were here to be a part of this with all of us. You loved your Bri Bri so much. You two and your big blue eyes were quite the pair. I can’t wait for Bri to meet this Poppy girl. I know she is going to be so helpful with her the same way she is with your brothers. Best little sissy ever;)
I miss you. I love you. I hope you are safe. Sweet dreams, little one.
P.S. I just wanted to say a thank you to all of you lovely souls who have been sending the sweetest little gifts, cards, and even a few Poppy things. I even got a little Poppy headband and matching socks all the way from Ireland a couple of days ago. You all are the most thoughtful creatures on the planet. Thank you for loving my little boy and our family so much. Thank you for letting Ronan make you the most beautiful people. It makes my very broken heart, skip a beat. I love you.
Posted by rockstarronan on April 2, 2013
Ronan. Yesterday was St. Patrick’s Day. One of my favorite holidays. We didn’t do much. Your brothers had baseball and basketball practice and we kind of just went along like it was just another day. Holidays are still weird for us and celebrating feels funny to me. I make sure to always stay off of things like Facebook during many of the holidays. Seeing everyone normal and happy still stings for me. Not that I would want it any other way for others, but it just makes me sad that things are not this way for us anymore. We all wore green. We went out and had a family dinner where we laughed a lot at the things your silly brothers said. There were some heavy talks too, mostly in the car ride to where we were going.
It was Quinn who was inquiring about things, like always. I know Liam wonders these things, too but I think he keeps his questions more to himself. We started talking about Poppy a bit about what will happen when she is born. Quinn’s next question was, “Didn’t Dr. Jo’s baby die when she had her? Can’t that happen to Poppy?” Questions like this always make my stomach drop and my heart sad. Your big brothers should not have to know things like this at 9 years old. Your big brothers should not have to worry about things like this at 9 years old. I know that they do due to everything we went through and the world we live in now which is a world full of other kids with cancer and often times babies and kids die. As much as I try to shelter them from this world, it will forever be a part of them and shape them into the boys they are becoming. As far as I can tell, it hasn’t harmed them at all. They only seem to be becoming wiser, sweeter, and more compassionate human beings. If that were even possible as I swear to you they have been this way since the day they were born. I explained to Quinn what happened to Dr. Jo happened a long time ago. I did not tell him it still happens all the time in this day in age. Your daddy went on and on about Dr. Schwartz and how amazing she is and how she won’t let anything happen to me or Poppy. My mind quickly went to, I remember when we had a similar conversation with Quinn at 7 years old. “Is Ronan going to die?” he asked with his big beautiful eyes. “No way, Quinn. We have the best doctors taking care of Ronan. We are not going to let anything happen to him. We promise you, buddy.” Promises that we couldn’t keep, promises that were broken, but promises we fully believed in at the time. Your daddy really did swoop in and save the day by turning the conversation into fully being about what a great doctor Dr. Schwartz is and what it is, that makes her such a great doctor. Both of your brothers seemed intrigued listening to what your daddy had to say. I exhaled a little and let myself get lost in his story, too.
I also got to see Teddy’s mom on Sunday. She flew into Phoenix to see Dr. Jo. She came over and we went out and had a very somber yet sweet lunch. Our entire conversation revolved around you and Teddy. About the choices we made with your treatments, about how we are still in utter shock and disbelief that our sweet boys, fucking died. Clarence was making the drive up to Sedona for a few days to have some time with Dr. Jo. I am so glad for that. I’ve been nudging her to come and see Dr. Jo for a while. She texted me today to tell me thank you because Dr. Jo is absolutely amazing. I just responded with, “I know. She’s unlike anyone on this earth.” I am so glad Clarence is here and taking some time for herself to talk about all of this. I am so glad Dr. Jo is the one helping her. After Clarence left Quinn came up to me. This next part makes me want to cry. I sometimes cannot believe I am having a conversation with a 9-year-old. “Mom. Is Teddy’s mom alright?”
I just looked at him and gave him a little smile and said, “I think so, baby. I think she is just a little sad.” He goes, “Teddy just died, right? I hope she is alright. Teddy always seemed so happy whenever I was around him.” (mind you Quinn met Teddy once but all he remembers is how happy Teddy was.) I told him that she will probably always be a little sad, the way we all are when we are missing you. How we will never stop missing you, but that doesn’t mean we can’t be happy, too. He looked at me and goes, “Are you o.k., mom?” Somehow I kept myself together and wrapped my arms around him and told him that I was o.k. and thanked him for asking. Liam was sitting in this room listening to this conversation as well. I know he hears everything but he seems to let Quinn do most of the asking the questions. It’s like they have this secret pact. Liam wonders, Quinn asks, then they both know. It really is very sweet and special the little twin bond thing they have going on. I don’t know what they would do without one another.
Today your Aunties, Stacy and Fernanda came over with mission Poppy on their minds. They made me show them everything I have for your sister. We went over everything I don’t have, but need. We sat in your room for a long time. I sat on your bed, Stacy sat on the opposite bed, and Fernanda was sprawled out on your floor. I pushed back my tears a lot as we talked about you, your sister, your bedroom and I listened to Fernanda as she told me how far along I have come. She told me she knows it’s hard for me to see because I am the one walking this walk, but to them on the outside looking in, I have come such a long way. I can agree with her in a way but I also know that I don’t really have any other options. I won’t give up on you, therefore, I won’t give up on myself or this life that I am here trying to live the best I can. I know I could have chosen to self destruct. I know I could have ruined our entire family because I was so blinded by my endless amount of pain but that little voice in my head always went back to if you do x, y, and z, you will let Ronan down and you cannot let Ronan down. I always think about all the lessons you taught me in your short little life and I refuse to just throw them all away. I am here to use those lessons and do as much as I can with them. I will not waste your little gifts on my sadness that often weighs me down but somehow I always seem to find a way, to push it off of me and continue on. You were such a little fighter, how could I possibly not be as well? I promise I will always fight for you, my sweet boy.
Alright baby doll. This is all I can write tonight. Please continue to keep Poppy safe. We are all so excited to meet her. I miss you. I love you. I hope you are safe.
Posted by rockstarronan on March 18, 2013