A purple dress for you? Of course.

http://youtu.be/mtH2L5I6vYM

A Rebel with a Cause and A Death Hike

Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.

I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.

Pediatric Cancers:

Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers

There has not been a significant breakthrough in the deadliest childhood cancers in 30 years

One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers

Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials

Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.

The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable

In today’s clinical research landscape, progress is too slow and promise too rare

Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)

Basic research generally receives more funding than translational or clinical research

Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone

Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries

Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas

Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer

Conventional nonprofit organizations are not necessarily designed to progress therapeutic development

Parents are forced to become experts in their child’s treatment

With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can

To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer

Children need help now

You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.

Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.

So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.

I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.

So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.

A Dangerous Day Indeed

Ronan. Today, I lived. I lived and I didn’t feel like dying for the first time, in a long time. But I am still aware of the reason it is, that I am trying to live this life to the fullest. I am aware that it is because of your death, that I have no choice but to go on and try to live this life now that I am without you. That is a heavy things to carry around with you, when you are just trying to survive. It weighs you down but at some point, you just have to try to get used to carrying this weight around with you now. Because it is never going away. I met Mandy Bee, Kristi and her friend, Jacqueline, at Scottsdale Gun Club. I’ve never shot a gun before in my life. Well, that is not totally true. I’ve shot a bb gun a few times. I think I tried to shoot my little brother once, when we were little with one. But that is the extent of my gun experience. Today, I had no idea of the awesomeness I was in for. I should have known just due to the company that I was in. We arrived, Mandy and I had to watch a little video before we got started. Kristi and Jacqueline are pros. Jacqueline has been shooting guns since she was 9. Badass. We made some pretty little targets to shoot at. Most of them said, “Fuck You Cancer.” or “Cancer is an Asshole.” I made one, for a specific person, who shall remain nameless. But it felt the best when I was shooting my machine gun, at this sign. I also made one for Inferno Fuckwad Bob. Jo would have loved that. We shot a couple different machine guns, a pistol…. I have no idea of the actual names of these guns. All I know is it was the best therapy I’ve had in a long time. I took out a lot of aggression and anger today on those targets. I felt empowered. I am woman, hear me roar.  I told Woody I want a machine gun, for Christmas. I was joking, of course. But that is how I feel. Like life is so fucked up that I should just be able to walk around and carry a machine gun with me at all times. To kill all the zombies that are trying to eat me. You would have loved today, baby doll. I know I made you proud. Check mark number 1 for your little bucket list  that I am going to carry out for you. Thank you K,M and J for today. It was a day that Ronan would have loved.

After our little Baby Danger outing, Mandy Bee and I went and grabbed some lunch. I told her I was freaking out because I hadn’t worked out today, so I was going to go home and try to get in a run before I grabbed the boys. She told me I should just come over and I could workout at her house. She said she would teach me to box. Sign me up! Another thing, I’ve never done. We got to her house and changed. She has a punching bag hanging in her garage. I told you this crazy stalker girl, is my kind of girl;) One that keeps a punching bag hanging from the ceiling of her garage because she likes to take her aggression out on things that she can hit. It was pouring outside. We turned on some loud music and bootcamp Mandy was in full effect. She yelled at things for me to do. I did them. After about 20 minutes of doing whatever she told me, it was time for my little punching lesson. I put on her gloves. I tried to focus on my form and breathing. Mandy held the bag and screamed a lot of fuck words for me. It was hard. Really hard. Next I took off the gloves. It was time to hit the bag, with my forearms. I can’t remember what Mandy called it and I didn’t care. All I knew is I was beating the shit out of something and I didn’t want to stop. I continued. She told me that was enough. I told her no. I wanted more. She told me to look at my arms. They were all scraped, bloody, red, bruised. I told her I didn’t care. It didn’t hurt me. She let me go another round. She had to pull me away. We worked out in the pouring down rain. I didn’t have shoes because I had worn my boots earlier in the day. So we were both barefoot. After our kicking workout in the rain, we went on a run. Barefoot. We came back to her house. I told her I wanted to punch the fucking bag again. She let me but finally told me enough was enough. She wasn’t going to let me hurt myself anymore for the day. I felt like what I bet a crack addict feels like. I wanted more. My bruised and bloody arms, told a different story. I can hardly wait for my next little punching lesson. I really did tell Woody that I want a punching bag and boxing gloves for Christmas. Preferably purple.

You know how I am when I say I’m doing to do something, Ronan. I don’t half ass it. Today, I didn’t do just one thing I’d never done before. I did three. I told Tricia this and she laughed and said, can’t we just ease into this and your new danger plan? I told her no. I’m already plotting as to what next week has in store. Although your brothers will be out of school for break, so I’m going to have to get creative so I can include them too.

I’m tired tonight. Sore. I spent the rest of the evening, feeling sick to my stomach due to the crazy Mandy Bee Bootcamp. It’s still raining. Pouring. I hope it never stops. I love you. Today, I missed your smile so much that it took my breath away. You have the most beautiful smile baby. I miss you. I love you. I hope you are safe. Sweet dreams my little wild and free soul. I hope you saw all I did today and you know it was all for you. Always for you. G’nite.

xoxo

Oh, this makes me smile. Foster the Peeps 4-Eva!!!!!!

http://vevo.ly/uRrZSX

This is a gift. But it came with a huge price.

http://youtu.be/GF6kBNLTvaU

 

Baby Danger Plan….. Activate!

Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.

After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.

I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.

I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.

I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.

Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.

I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.

7 Months but who’s counting? I am. I always will be.

Ronan. I wrote to you. On your 7 month day. I wrote to you around 2:30 a.m. May 9th was just 7 months ago. Feels like 7 years. I couldn’t sleep at all that night. I ended up making your daddy give me something to help me sleep. The screaming in my head wouldn’t stop. It stopped and I fell asleep. I don’t know where everything I wrote to you went , as it is not here anymore. It’s probably best that way. I’m sure what I had written down, wasn’t pretty. I’m not sure where the week went. It was busy. Non-stop. I’ve been a very busy mama. I had a meeting at T-Gen. They were kind enough to meet with me so I could get an idea about what it is, they are doing in regards to Neuroblastoma. I wanted to see what they are using the 4 million dollars that Dell has given them for. They are working with Dr. Giselle Sholler, whom you know I am very interested in. I have been reading everything about her that I can possibly find. She is on to something big. I look forward to the day I can meet her. I look forward to the day that she can retire, because she is going find a cure for this nasty disease. I sat in a room full of these people from T-Gen. I had to tell them all, a bit about your story. I’ve never really talked about you, in front of a room full of strangers, Ro. I much prefer hiding behind my computer. Glasses on. Hair up. No make-up. Music blaring. Did you see me? The way I was only able to give them the generic basics about what happened to you? The very business like story. I had on my best business like boots. My best business like jacket. My best business like face. Game face on. Because I knew if I said what I really wanted to say, that I would have ended up under the table, sobbing like a baby. How do you tell a room full of people, what you really want to say? How do you tell them the way the love of your life, was ripped out of your arms and how hard you fought to help them beat this disease? How you fought with everything in your entire body, only to fail. So clearly, I failed as a mother because I promised I’d save you, and I didn’t. How do you tell them the way you watched your child die, will haunt you for the rest of your life. So much so that most days you walk around feeling as if all the air has been sucked out of you. How you are now filled with such guilt and shame because you are certain you chose the wrong path for your child. Because if the right one had been chosen, you would still be here. Death would not have been the outcome, right? I know what you are saying. That this is not the case. Because if there were ever 2 parents, who knew this disease inside and out…. it was us. If there were ever two parents, who tried their hardest…. it was us. If there were ever two parents, who loved a little boy the most…. it was us. But it was not good enough Ronan. We failed. I hope I don’t always believe this, but the grief thing is still blinding me and beating me to a pulp. So much so that I have bruises all over my body and I have no idea where they have come from. The funny thing is, these bruises appear and I don’t even feel them so I don’t notice them until I look down and I see a huge black and blue mark on my leg. Or my arm. I just assume I don’t feel them, because I don’t feel much of anything anymore.

So, the meeting at T-Gen I took your Mr. Sparkly Eyes with me. I am so thankful he went as he has a way of knowing how to put my thoughts into words, without me having to say anything at all. Because he was there, though all of this. He watched the way this played out. He saw your smiles, listened to your laughs, watched my tears, listened to my screams, at sat back, helplessly, when there was nothing left to do. His insider’s/outsider’s perspective on this was useful as well. I get that I am the emotional mommy who just lost her son. He was able to play the role of the level-headed, logical one who loved you as well…. but not in the way that a mother loves her son. As soon as we left T-Gen I got the talk. The one that he is so good at giving. The one that went something like, “This is it. This is what you were meant to do. I don’t care how hard this gets, I don’t care how much you want to give up. You cannot. Do you hear me? You cannot. This is it. You are going to change this so that one day, when I am gone, you can look up there and give me a little wave and tell me you did it.” I couldn’t even reply to that one. I only choked back my tears and said something like, “Where are you going,??” Which in turn ended up in the,”I’m not going to live forever talk.” The one I choose to ignore, every time it comes up.

From T-Gen, I went home. Wiped out from the day. I had a board meeting to go to though so I had to man up as they say. I was dreading it. Our last one was a disaster. It was so painful and everyone was on edge. I expected this one to be the same way. It wasn’t. It was lovely, but long. 3 hours long. It ran really smoothly and all of our concerns were addressed but in the most loving way possible. After we wrapped things up, I looked around the room and felt a wave of warmth wash over me. Like something very big and magical was about to happen. All because of the women that I was surrounded with whom were all there for one reason. Because of you. Because they believe in you and they know they are going to be a part of something so beautiful and true. Something different and unique. Something that is going to change their lives…. for the better. They believe in you. They believe in me. That is more than I could ever ask for, Ro. I felt you all around us that entire night. Thank you for that, baby. I really needed that in the worst way possible.

I spent that next day, feeling pretty beat. I think the whole not sleeping thing, the T-Gen meeting, the board meeting, and not seeing Dr. Jo, caught up to me. Thursday came and I tried my very best to suck it up and carry on with the world. Mandy Bee spent the morning with me, doing distracting things. I was out with her for a couple of hours. I knew I was going to crack. I looked at her and told her that I needed to go home, as I was feeling like I couldn’t handle much more of the real world for the day. She took me home, helped me with a few things around the house and played the role of the best jewish mother that I have come to love, so much. She told me she could stay if I needed her to. I gave her one of my best bullshit smiles as she calls them and told her it was o.k. I needed the quiet time. I knew what was about to happen and I just had to give into it. She left. I crawled into bed and sobbed the rest of the day. Thankfully, Liam and Quinn stayed the night with Mimi and Papa so I didn’t have to put on a show for anyone. I got up to run to an appointment. I came back home. Your daddy and I were supposed to go to a concert. He came home. He saw my puffy eyes. I told him, I couldn’t go. I told him to please go without me, to have fun with his friends. I could tell he needed to blow off some steam. I told him I just wanted to stay in bed and be sad. I don’t do that often enough. I was in no mood to go out in public and pretend. Your daddy went. I stayed home. I cried for 15 hours that day and night. I cried for you until I could take no more. That’s when I had to take the little magic go to sleep pill. I thought all of that crying would have knocked me out. It didn’t. The screaming in my head and the silence of the house were too much to take. I passed out. I woke up feeling o.k. 7 months had arrived. I just had to make it through the day.

I had a busy busy busy Friday. I saw Dr. Jo. It was good. It’s always good. I had a lunch to go to after I left her. A lunch that turned your very sad 7 month day, into a very sweet day instead. I met with a new friend. I say new friend, because I have a feeling about this new person. You know that feeling when you meet somebody and you just kind of go, oh hello person I feel like I’ve known my entire life, but I’m just meeting for the first time, today. That is how I felt when I met this person. Her name is Kristi. Kristi Michaels. She knows that Rock Star person we talked about in a few posts before this one. She knows him, very, very well. She knows him, better than anyone. Hellos were said. Hugs were given. We hopped in her car where we sat for a good 20 minutes before leaving for lunch. We sat and talked. I guess we more cried, than talked. I was a mess. She was a mess. We sat and she listened as I told her about you and this sad story that nobody wants to hear about. Because childhood cancer is just too sad so people would rather ignore it because if you ignore it, surly it will go away, right Ro? Bullshit. Somewhere in the middle of all the tears, Kristi said Bret wanted my permission to do something in honor of you. He wanted to ask my permission to have a room at Barrows Medical Center, where he was treated for his brain aneurysm, named after you. Built for you. With your little face, smiling down at the kids below. A play place for the kids to go. A safe and happy place full of all things wild and free. Because you are that beautiful, Ronan, that nobody wants to forget your face. Kristi and Bret and going to make sure that you don’t get lost in all of this. They want to help make sure to help spread the word in any way possible, any way I need or want. This is just the beginning of great things to come. They know that it is not acceptable for kids to be dying of cancer due to the lack of funding and awareness. You should not have died. You just should not have, Ronan. This was not the way this was supposed to turn out. But for fucks sake, it did. And I swear to you, I’m not going to stop telling your story until people start to listen. And things start to change. Kristi was crying when she told me about this. She was also crying when she told me that Bret wore your bracelet in his Pet Smart campaign. And also, in their Christmas Card picture which she gave me while we sat in the car. I opened up their Christmas Card. This was after my little rant about Fuck the Holidays and Fuck Holiday Cards. I smiled when I looked at the faces on the card. I smiled because it was at that exact moment, that I knew that this family, staring back at me, was truer than true. It wasn’t a FAKE or PHONY holiday card, Ro! It was them. It was who they are. It was everything Rock and Roll and Love combined. Their card, told their story and no words were needed. Music. Tattoos. Dogs. Black. Dark. Edgy. But soft too. Smiles. And the best thing of all…. one of their little girls, is wearing a Santa Hat with little Devil Horns sticking out of the top. The exact kind of Santa Hat, I would have put you in Ronan. I smiled at this Christmas Card. It made my day.

We left for lunch after we composed ourselves. It was the kind of lunch where you find out you have a lot of things in common. Small town girls. Big city dreams, but small town girls at heart, forever. A love for nature. A belief in true love. How you both think, being a mom is the best thing ever. How you both believe in raising your kids in an open and honest world. Sometimes maybe a little too honest which others judge. You both tell those people, to fuck off. Because at the end of the day, you both know that as long as you are true to yourself and your family, nothing else matters. Because fucked up things happen everyday like kids dying. And you never know when everything could change in an instant. So you’d better make the best of this time by being true to where your heart leads you. Especially if it is wild and free. The best adventures are wild and free…. right baby? I know you knew this from the second you were born and it was the way you lived you life every single day. I cannot even begin to imagine the things you would have done in this world, Ronan….. had you been given the chance. At one point during lunch, my passion for you took over and I was blabbing about how I much I believe in you and how I refuse to do this any other way than the way that my heart is telling me to. The way, you are telling me to. I don’t remember exactly what I was saying, but Kristi looked at me and goes, “You remind me, so much of Bret.” This caught me off guard but in the best way possible. She then went on to tell me how if Bret would have listened to all the people in his life, telling him he was going nowhere, how he couldn’t sing, etc….. that he would have ended up a truck driver. He was told no, so many times. He didn’t listen. He kept going. He chased his dreams. He broke downs all the doors that were slammed in his face. He ignored all of the asshole people who for some sick and twisted reason, thrive on keeping others down. He is proof that if you believe in something enough, anything is possible. Anything. Even a cure for this fucking disease that killed you. A CURE. I said it. Dream big or go the fuck home.

After lunch, the 7 months since you left me lunch that actually turned out to be a beautiful day….. thank you, Kristi<3<3 I ran back to Dr. Jo’s. We had another little session with some of our lovelies, Ronan. I think they have been having a hard time…. trying so hard to understand all of this. They both just want to understand so badly what it is that I am going through…… and for as hard as they have been trying, I think they feel lost. I felt like Dr. Jo could make a little sense of this, more so than I can. I’m too caught up in it all. She is the expert not only experience, but education as well. Dr. Jo was sweet enough to meet with all of us, so she could listen to their concerns and she did her best to let them into the world that I now, live in. I think it was helpful. I hope it was to them. It was the least I could do. I know I say I want to be alone and push everyone away. Sometimes that is true. But some days it is not. I don’t want to lose everybody in this process. I want to make them understand even if it is just a tiny bit, without having to go through something like this. I don’t know if that is even possible, but I feel better knowing that I am trying when all I want to do is give up and not care. I care. I know I do. I’m too loving of a person, not to.

I took Mandy Bee barefoot hiking today with me. Because we are badass. I didn’t hike up the mountain. I ran. Barefoot. Take that, mother fucker cancer. I’d like to do it again, tomorrow. I didn’t feel a thing. Dr. Jo is leaving tonight for a week to a silent mediation retreat. I have been panicking. She sent me a text before she left. It said for me to please take good care of myself while she is gone. How she needs me as she can’t change this world, on her own. She’s not going to have to. You will help her, my bravest little boy. I know this.

Has this turned into a novel tonight or what? I’m sorry. That’s what I get for not keeping up with you. I hate the nights that I don’t write but my head has been a mess. I have much more to say, little one but I need to get some shut-eye. I’m feeling tired, which doesn’t happen naturally very often anymore. I miss you. I love you. I hope you are safe. I’ll forever be sorry.

G’nite baby doll.

xoxo

The Guest House
by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

Happy Fucking Holidays!

Ronan. This is all too much. The Holiday Cards are coming in the mail. I have brought myself to open the ones that have come, only they make me sick to my stomach. Which in turn, makes me feel like a bad person. But I throw up anyway. What do I expect? To I see a picture on the card of an unhappy family? To see a picture on the card with a bald baby who has cancer? To see a picture on the card, that tells the real story of what is going on in the happy families lives? To see the picture of the family like us?? No. The stories on all the holiday cards, tell the same story. Perfect story book life. Beautiful families. Glossy hair. Whiter than white teeth. Perfectly dressed. Happy. Healthy. No worries. No stress. No fighting. No tears. No 3 year old child, who died from cancer. A fairy tale. Some come with a story such as, “Our Year Summed Up in 2011.” They say things like, “Johnny graduated high school, Summa Cum Laude! He is off to Harvard next, where he plans on becoming a doctor. Susie, our oldest daughter, is engaged! The wedding will be in Hawaii, Spring 2012. Bob ran his 5th Marathon and is retiring next year. I, myself am keeping busy with all of our healthy perfect grandchildren!” No problems exist in these letters. It is the fluffiest of the fluff. I would like to hear a real story, for once. It would be, refreshing.

Maybe I will send out a holiday letter this year. I’ve never done it in the past, but there’s a first time for everything, right?? Maybe I will send out a real holiday letter with a real picture on the front of it. It will be a picture of our family. All broken and black. Sitting around your Urn, holding your GiGi and Captain Rex. We will not smile in the picture as the fakeness cannot hide what truly exists. An ocean tide of sadness, only to fall into a black abyss. What will the letter say??? This holiday letter of 2011. How do you put into words, how your world has been shattered?? As nothing else matters. Let’s start off by telling the truth. The truth of this ugly thing called cancer that took you and your little life as fast as can be. But oh no! It didn’t happen! Because cancer cannot be! It cannot exist in the lives of those so perfect and true. It cannot exist because there was you. I’ll tell this holiday story of 2011. But friends be warned, it is not going to end up with Ronan in heaven. For those of you, offended and hurt, please take a moment and stop your words. For this is my story and it is not yours to tell. Sit back, shut up, and be prepared to go to hell. Because if a hell truly does exist, it is here, it is now, it is living this life as a bereaved mommy and daddy. Not knowing what to do during this holiday season, where the Christmas carols are cruel, where the blinking lights on the decorated houses only bring tears of sadness, not of joy. Because everywhere you look, you are reminded of what is missing….. the one thing that was true. So here we go, little Holiday Card of 2011. If I had my way, we would bypass straight through this day. Fast forward but to what? You aren’t coming back. So here I sit, preparing for this season. Forgive me if I am not shouting, “Merry Christmas!” from my rooftop. I will be the one at the top, shouting, “Fuck you cancer!” instead.

The Thompson Family 2011

Our year was off to a wonderful start. We spent the first few months, with Liam and Quinn finishing up kindergarten. Woody is loving life as an attorney and being the father to 3 boys. Maya kept busy taking care of the boys and chasing after Ronan, who is more than a handful but in the best way possible as she enjoys every minute of him. We spent part of the summer in San Diego, taking a break from the Arizona heat. Maya, Liam, Quinn, and Ronan then headed back the small town, where she was raised to spend a few weeks with her family. She and the boys spent time in Washington State, swimming in rivers, picking berries, exploring caves, fishing, and enjoying nature and the simpleness of life. They returned back to Arizona as the school year was approaching. Ronan’s little left eye started to look droopy. We took him to the doctor. We took him to two Ophthalmologists. We took him to Phoenix Children’s Hospital. He had an MRI. He had a CT scan. The news was not good. We were met by an Oncologist. Your child has cancer. We went into shock. What do you mean, our child has cancer? Our perfectly healthy little boy, who has just spent the entire summer, running around as if he were the healthiest child on earth? But he was not as cancer had invaded his entire body. He not only had cancer, but Stage IV cancer and it was very aggressive. We researched our options. We started treatment. Our perfect little life, was turned upside down within minutes. Everything changed. People swooped in to help. So many beautiful people. The twins were forced into a new reality. All they had ever known was a happy, safe, loving house. It was now all taken away and Maya and Ronan spent months living in and out of the hospital. Quinn asked us, his parents….” Is Ronan going to die?” We both just looked at him, shocked. Of course not, Quinny. We have the best doctors taking care of him. He is going to be fine. We both believed this. Ronan. Have you met our Ronan, you asshole cancer? He is the toughest boy out there. He never cries over a thing. He never takes no for an answer. He is beyond strong. You don’t stand a chance. Look how well he is responding to treatment! The chemo is working! Now it’s off to New York, to get the base tumor out of him, by the BEST surgeon they say. We all spent the holidays, together in New York. It was beautiful. Ronan was getting better. Ronan was happy. We were all together and that was all that mattered. Surgery was a huge success! Ronan did great. He was up and walking around, in no time. We told you, cancer didn’t stand a chance. It was time to return back to Phoenix. Our last round of chemo, or so we thought. One more round, than scans were next. We couldn’t wait to see Ronan’s progress. Ronan made progress indeed, but it was not what we had hoped. Too much cancer was still left. The stem cell transplant that we had hoped for, was a joke. Time to make a new plan. A better one, right? Because the option of cancer winning, was not a possibility. Maya, Woody and Ronan all flew to San Francisco, Philadelphia, and then to New York. Let’s do another round of chemo, and then it’s off to the Big Apple. Where dreams come true and the city where Ronan will get better. Another round of chemo in Phoenix. Off to New York. Ronan’s leg is hurting. The cancer is getting worse. We started him on radiation, to make the pain subside. Our little brave 3-year-old, left in a cold room. Alone. 14 rounds of radiation. No sedation necessary. We would kiss his little pouty lip, give him his pistol and Captain Rex. We would leave his side while he tried to be brave but we saw the little tears as they slid down his cheeks. We watched our little boy, on the other side of the wall as the radiation would start. We talked into a microphone. “We love you, buddy. We’re so proud of you. You are brave and strong. Hold still. 10 more minutes! We love you, Ronan.” He would lay there, so stoic and still. Braver than most men, 3 times his age. We started another chemo. ICE as they called it. A mixture of poison, he had never seen before. It was sure to work. We finished the round. It wiped out his immune system. Inpatient at Sloan for 23 days. The time passed so quickly. We had a ball. Forget we were stuck in a hospital. Forget it all. Pistols were shot. Costumes were worn. Books were read. Cuddles were had. We made the best of each and everyday. We were just so thankful, to be together. Scans were next. Let’s see what this ICE can do! Dr. Brian Kushner…. is ready to speak to you. Guess what he said? He didn’t have to say it at all. His eyes told the story, of Ronan’s cancer and all. Back to Phoenix with Ronan we returned. We’re not giving up as we watched the others, walk away. There is still HOPE! He is so feisty, today! Let’s fly back to Philly! Dr. Mosse is there. She will help us and it will all be o.k. I’m so sorry, she told us… there is nothing I can do. Back to AZ, not willing to accept defeat. But now, Ronan is not getting better and all he wants to do, is sleep. Hospice is here, at my lovely house. Get those people out of here Maya says to Woody…. it is not time for him to go. Get us to San Diego, it’s time to put on a show. Before San Diego, a little stop we must make. At a place called The Ryan House, a place that is safe. Ronan is hurting, his pain is out of control. These people can help him, until we can get him better…. radiation we will start. Again.”Rub my leg, mama.” So Maya does. She spends a week, rubbing Ronan’s leg until it was too cold to rub. Lots of people came by. But for what? Not to say goodbye? Ronan is going to be fine. He’s just tired, you’ll see. Once we get him to San Diego…. he’ll start to feel better and get a fresh start. But Ronan’s not walking, eating or drinking. More Ativan is given. Keep him comfortable. Tell him all the things you want to say. Tell him how it’s time to stop fighting, it’s time to let go. His little body has had too much…. it’s time to go. His little eyes, give one last flutter. His lips are kissed, he is bathed and redressed. The gurney is here, to take him to rest. Promises are made, ones that you will keep. Or so you say. It is now something that we have to remind ourselves of, everyday. For our lives have stopped, but for others they go on. All while this peaceful earth, is without our little Ronan Sean. Birthdays come, Halloween too. Thanksgiving has passed and now at last, the biggest holiday of all. One where millions of HAPPY HOLIDAY cards, will be sent out to all. Did you get ours this year?? Oh, you did not?? I’m so sorry. It must have gotten lost. Lost in the shuffle of our new, lovely life. One that is filled with sadness and despair. Happiness exists for those to see. But have you taken a good, hard look into our eyes?? If so, you know the truth. Our eyes will never be the same, that is so easy to see. The world didn’t stop the day our baby died…. but for us it did. We are all hurting and so scared inside.

Oh, 2011… what a year, indeed! We hope next year, will be a bit better. But living life, without our Ronan seems like a sick joke. So, please forgive us if this Holiday Card comes off quite brass and rude. For this is our life and HAPPYHOLIDYSMERRYCHRISTMASLOVEJOYPEACEONEARTHHAPPYHANUKKAHFESIVUSFORTHERESTOFUS does not exist this year.

And cancer, can fuck off. But peace on earth!!!!!!!!!!!

Love Always,

The Thompson Family

Maya, Woody, Liam, Quinn, and RONAN. Always Ronan.

Ronan. You Stink. You Smell like Beef and Cheese.

Ro baby. Hi. I love you. I miss you. For as often as I write to you, I still can’t get over the fact that I am writing to you because you are dead. This will never be o.k. with me. I will never get over this. I will never stop wishing this wasn’t my life.

Yesterday. I mean, really. Was yesterday really necessary? No. But we don’t live in a normal world anymore, so any kind of worry, becomes something major. Remember that CT/MRI scan Quinny had a couple of months ago? Your daddy followed up with a neurologist afterwords. They said it was nothing to worry about but we know that nothing to worry about will never exist again. They said they wanted to see us in 6 months just to be on the safe side. I got a call from PCH on Wednesday saying they actually wanted us to come in on Thursday for another MRI. They wanted to check the blood flow in Quinn’s brain. I, of course, freaked out. I was trying to drive to Dr. Jo’s office when I got the voicemail from PCH. I passed her office twice because that is how distraught I was over this voicemail. I showed up to Dr. Jo’s office, frazzled. I told her I was waiting to hear back from them to see if they were mistaken because the last I heard, we were supposed to come back in 6 months, not 2. I called Dr. Maze to ask him if he could figure out what was going on for me. Nobody could get a hold of the Neurologist to get to the bottom of what was going on. I told Dr. Maze we would just keep the appointment and do another MRI if that is what they wanted. I told him about Quinn and the way he has been blinking his eyes so much… kind of twitching. I told him how I had him at our pediatrician a few weeks ago and that I had mentioned this to her and she said it was probably due to his Type A personality and stress. But now I was convinced it was because he had a fucking brain tumor or something. Aubrey asked why I hadn’t told him this before. I told him because I have been watching it and didn’t want to make a big deal about it as Dr. Campbell told me it was due to Quinn’s anxiety. He told me to just come in so I could put my worry to rest. I didn’t argue.

I didn’t tell Quinn until Thursday morning, that we were going to have another test done. I downplayed it. I kept him home from school and told him it was because I wanted to have a day alone with him. I told him that I wanted to figure out why he was blinking his eyes so much, so were going to go down to PCH for another little test. I made it out to be not a big deal at all. We got to PCH and waited. My Mandy Bee came down to sit with us. She went back with us as Quinn went into the MRI machine. She rubbed my back and made me laugh by sticking ear plugs up her nose. She kept me from throwing up anymore than I had during the day. Quinn stayed calm while we waited in the loud, cold room with him. He was a little champ. As soon as we were done, we gathered up our things. Dr. Maze wasn’t there but I texted him after to tell him we were finished. He said he would call me after the techs read him the results. Mandy and I took Quinn to eat. I didn’t eat as I was too nervous but I sat and pretended that everything was fine as I waited for the phone to ring. It rang. I didn’t even get the chance to ask for the results as Dr. Maze told me that everything was fine before I could even say hello. There was nothing there. He was sorry that we had been put through this again because it wasn’t necessary. I thanked him. I wished it wasn’t necessary but as we know now, everything is necessary when one of your children gets cancer and dies from it. I came back inside to Mandy and Quinn. I told them both that everything was fine. Mandy sent me a secret text asking if everything really was fine. I told her yes. She asked me why I still had such a worried look on my face. I told her because my worry never goes away anymore. I worry about everything, Ronan. You. Quinn. Liam. Daddy. Mostly you.

I wrote the above a few days ago, little one. It’s been a long, hectic week and it took me some time to recover after Quinn’s 2nd MRI. I’ve been writing here and there to you…. but mostly I’ve just been back in my black hole.

Ronan. The Rabbit Hole. It’s a movie. It’s a movie with really good actors. It’s about a mama and a daddy who lose their 4-year-old boy. Not lose like lose him at the grocery store and then they find him 10 minutes later. Not lose like that time we lost Liam at Disneyland only to find him 5 minutes later. I so wish we had lost you at Disneyland only to find you again. I wonder if those parents, know how lucky they are. So, this Rabbit Hole movie. I don’t know why I even bothered tonight. I NEVER watch T.V. or movies anymore but I guess I was just wanting an escape. Leave it to me to go and watch a movie about something like a child dying. Defeats the whole purpose of my getting lost. I don’t know why I can’t just ever seem to take the easy route with things. I should have just put in a mindless comedy. Something that would maybe make me laugh for a second. I guess it was more curiosity than anything. I guess I was hoping Hollywood would get it right. I should have known better. They didn’t even scratch the surface, Ronan. Maybe if I were a normal mom, watching this under normal circumstances because all of my children were alive…. I would have felt differently tonight. If I would have watched this 2 years ago, when you were healthy, maybe I would have thought this movie was so gut wrenching and sad that I would have left the theatre a wreck. Tonight, I almost laughed out loud at some of the scenes. I was also so distracted the ENTIRE movie by Nicole Kidman’s overly plumped up lips. What do they use to inject lips with these days? Collagen?? I’m clueless to things like that but whatever it is…. all I have to say is WHY??? I could not focus on the movie because her lips distracted me the entire time. That lady is so pretty. She is so pretty without those pouty lips. They took away from her character. Hollywood botched that one fo’ shizzle. But they managed to throw in all the stereotypical things that you would assume parents go through when losing a child. The struggle with GOD. The stupid shit people say like, “God needed another angel.” “This was God’s plan.” “He’s safe because God is taking care of him.” Nicole Kidman did freak out in a scene where a god comment was made. It made me laugh because for .1 seconds, her character reminded me, of me. They went on to show the stress it puts on a marriage. No shit. Really???? The time frame of moving on and packing up a room and getting rid of clothes. The Grief Support Group. The friends leaving. The fights with family. YAY FOR HOLLYWOOD! You got it right on the generic surface level. Who wrote this movie? Did they not get any input from real parents who are surviving something like this?? I think not.

They left out so many things, Ronan. They left out how after you lose the most precious thing to you, how the world around you literally feels like it is caving in, every second of the day. How after each day you survive…. because it is only about survival in the beginning…..how you fall into bed, and pray to anyone who will listen, not to wake up. For somebody to have mercy on you because out living your child is not something you signed up for. What about the sleepless nights? What about the pacing around the house, constantly looking for you?? What about the days that you cannot even leave the house because you cannot stop throwing up? What about the obsessing about what you could have done, differently? What about the buckets of tears that are never-ending and you swear you are going to choke to death on them? What about the way you don’t ever escape your own head and how you wish for anything but this life? How you wish to be beaten, raped, tortured, burned alive….. how you would endure any kind of pain to have your child back?? What about the way that this reality is so much…. too much…. so some days you spend the entire day, pretending like your child is still alive because on those days knowing that they are dead, it is just too much to handle. What about they way you feel so alone, even though you are surround by the most loving people on earth. What about the shame, anger and guilt that want to destroy you. What about how everyday is a fight. How you feel like you are swimming against the tide, day after day. How you have to watch as the people who care about you, look at you with pity… worry… and sadness. How you long to feel things like happiness again and wonder if it will ever come. But then you also wonder if you even deserve it. They forget to portray how the most simple things, become so difficult. How even remembering to breathe, is a struggle. What about the physical pain? The way your entire body aches. The way your throat feels so tight and dry. They knots that are up and down your back. The way your head feels like it has been in a vice. How you watch as everyone around you, goes on with their lives and how hard it is to see. How everyone expects things from you and doesn’t understand why you can’t come to holiday celebrations, birthday parties, dinners, etc….. Please, somebody cut the bereaved parents out there s0me slack. How nobody understands how hard it is to just function, let alone deal with all the social pressure of “moving forward.” How nothing is normal anymore and everyone needs to stop acting like it is. How your dead child, is so easily forgotten and how people just seem to want to ignore the fact that they existed. As if this will erase the pain?? Never. How you are blinded by survival because that is all you are trying to do, is survive….. for as much as you don’t want to. Because I know if you are a mama or daddy who has lost a child, you have wished to not survive this a thousand times. They didn’t touch on what it is, that makes a bereaved parent, go on with life. Is it Fear? Hope? Love? Guilt? Beliefs? All of the above, maybe? I’m still trying to figure that one out.

Ro baby. Did you see us on Saturday? We brought a tree and decorations to PCH and decorated a tree, in your honor. It was the best tree, we’ve ever had. It was so hard to do. It is on the 7th Floor of PCH. The Oncology Floor. We saw Dr. Eshun and gave him a hug. I love that man. Kind eyes. Kind smile. Kind soul. He is not only a good doctor, but a good man in general. I am so very thankful he was the one who had the privilege of taking care of you. I know he will never forget you. Your Dr. Maze came up to see us. I tried to ignore the tears in his eyes as he gave your Daddy a hug. Fucking Mother Fucker Cancer. I hope your tree will make some kids, smile. I put some special Captain Rex’s in the tree, just for you. I love you. This would have been your favorite tree, ever. Why haven’t we always been decorating our Christmas trees, in a Star Wars Theme? It made so much sense on Saturday. I was mad at myself for conforming the years before with traditional trees. Why is it, because you are dead, that the tree we did for PCH, was our best tree ever? The most fun. The most like you and your brothers??

Alright little one. Much more to write, but I need to try to sleep. I am driving up to Sedona tomorrow to see Dr. JoRo so I need to try to sleep. We watched “Elf,” tonight with some friends at the Montelucia Resort. I missed you every second. I cried. Your daddy cried. Everything in that movie, reminds us of you. It was one of your favs. I used to love how you would always quote Buddy the Elf. You would always say, “Mom. You stink. You smell like beef and cheese.” I would then, tickle you until you could take no more. I’m sorry we had to be there tonight, without you. I’m sorry we have to go out and do “normal,” things without you. I thought it was going to be a good family night. I am trying to make us do more of those things. Everything just feels so wrong, Ronan. I love you. I miss you. I hope you are safe. G’nite baby doll.

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Ronan and a Rockstar

Ronan. Today was one of those days that so many things have happened, that I feel like I’ve lived a week, in a day. I fell asleep earlier, exhausted from everything. I’m up now. Lovely. For the 10 days that Macy was here, I slept like a baby. I slept in a way that I have not slept, since before you were sick. Last night, with no Macy in your bedroom because she had to go back to San Francisco, I tossed and turned all night. I’ve done the same thing tonight. Macy, my natural Ambien is gone and I am back to not sleeping. I talked about this with Dr. Jo today. We chalked it up to being about many things. We think a lot of it is the way Macy takes our sad, empty house and fills it with peace and love. I think I took great comfort in knowing that while she was here, your little room was not empty because Macy was sleeping in it. Now it’s empty again. It’s sad and lonely which in turn leaves me feeling unsettled. So, back to not sleeping I go. I will write to you instead.

This morning I started tossing and turning around 5 a.m. I was groggy from only sleeping for a few hours. My phone beeped with a text message. It was from Dr. Jo around 7 a.m. It said, “Call me ASAP.” Crap. My stomach dropped. Is this something bad? Is she o.k.? My mind immediately goes to the worst place possible which usually involves an awful accident, somebody being seriously ill or dead. I called her back right away.

“Hi Mama!” she said. I said, “What’s wrong? Are you o.k.?” She said she was. She said she was driving down to Phoenix from Sedona but she couldn’t wait until our appointment to talk to me as she had something to tell me. I told her to hold on, so I could get up out of bed. I didn’t want to wake your Daddy. I grabbed your GiGi and went into your room and curled up on your bed. “What’s going on?” Dr. Jo then went on about the dream she had. How she woke up at 2:11 a.m., crying from what she had just experienced because it was that powerful and vivid. It was all about you. She said she saw you. She knew you were dead. How you were so beautiful and had this glow surrounding you. She watched you as you kind of hovered above me but you were nestled in my arms. She said “Hi Ronan!” She asked if she could hold you. You told her yes. She was holding you. Macy was there. You kept telling her, “You have to tell my mom, it’s o.k. I was there with her and Macy. But you have to tell her it’s o.k! Don’t forget. Don’t forget to tell her I’m o.k.” She held you and she said she would tell me. You kept saying those words over and over. She said she went to put you down and you started kicking your little legs telling her you didn’t want to be put down. Dr. Jo said it was one of the most real dreams she’s ever had about a person other than the one she had about her father and the one she had about Cheyanne. I smiled at her dream. I was quiet and then told her the kicking your legs part is so something you would have done. She asked how I felt about her dreaming about you. I told her I was honored that you chose to visit her and that I was so glad that you did. She said she was honored because she never got to know you, but the fact that you let her hold you in her dream, meant so much to her. She kept talking about how beautiful you were, how you had all of your hair. I imagine you looked to her, in her dream the way you looked in real life. With your little pouty lips, tan skin, button nose, that sandy colored hair, and of course, those big blue eyes. Absolute perfection in every way. I am so glad you went to see her last night, Ro. For as much as I don’t know, her dream makes me think that maybe you are o.k. I still don’t know how you can be o.k., without me. But I have to try to trust that you are because I am making myself go crazy with worry, that you are not. I don’t know if that will ever go away but during that time that I listened to Dr. Jo, I felt for a few minutes that it could be possible. I hoped, anyway.

After I got off the phone, I started our day as usual. Got your brothers off to school. Met up with Katie for a quick coffee. Ran to Dr. Jo’s office for a long session. We talked about how last week was. Everything that went on. We went back and forth on the noise that is invading my brain. We made some decisions involving how I would go about handling it. She was proud of me and how I had taken the time to sit with some things instead of acting impulsively on them which is what I would have done in the past. I sat in her office with your blanket draped around my neck as I always do. I often catch myself burying my face into it and smelling it the way you used to. She told me I looked tired. I told her I was so very tired. She offered to fill me up with sugar to get me through the day. I laughed at the 10 Reeces Peanut Butter Cups she had waiting for me on her couch. I peeled myself up, thanked her, and gave her a big hug goodbye. She told me to call her later about some things. I told her I would.

I had a little time before I had to get your brothers. I came home just to get a few things done so your Daddy will not divorce me. Things that I needed to get done like paying bills and putting laundry away. I came home to our quiet house which I hate but I cannot escape at all times. I escape it a lot. I avoid being here, alone, in the middle of the day as much as I can. It is such a sad, quiet house without the little pitter patter of your feet. Without your little voice that used to fill up this entire house with such love. Everything is different in such a bad way. A bad way which includes this reality that will not go away. No matter how many miles I run in a day or how far away I drive. It’s here to stay.

My phone rang from a blocked number today. Normally, I wouldn’t have picked it up, but I was clued in earlier in the day as who it may be on the other end so I picked it up.

“Hello.” I said in my best not 15-year-old voice ;) (that was for you, Sparkly)

“Hi, is this Maya?”

“This is she.” I replied.

“Hi Maya, it’s Bret Michaels.”

I simply replied, “Hi Bret,” as if I have known this huge Rockstar my entire life. It didn’t truly dawn on me, who I was speaking to. At least not while I was on the phone with him. That changed after I hung up and processed all that was said. It changed for the few minutes that I allowed it to, but then I remembered. Mr. Bret Michaels is indeed a Rockstar. But even more importantly, he is a dad. He is a parent. He gets this because at the end of his crazy filled days, it is the love of his life and his kids that matter most. He knows what really matters most in this world and it is not his name in bright, shiny lights. He gets the bigger picture of things and what is truly important.

He started off by saying how much he and everyone around him, thinks about us. How he has read this entire story. How sorry he was. I thanked him. He kept saying over and over that he wanted to help in any way he could. To please just let him know what he could do, and he would make it happen. He talked about how he gets asked to support a lot of charities, but he really only supports a few as he doesn’t want to confuse people. I know diabetes is close to his heart as he struggles with it and wants to find a cure. He told me that he wants to support this. How he wants to help me change things. We talked about the things he can do. We talked about the connections he has which are HUGE. He just worked with the Trumps on a Fundraiser that raised a million dollars. He told me he works closely with them and he would be happy to be the link between us. The things he has offered to do are bigger than anything I could have ever thought possible. I mean, I know I have huge goals and a very different vision for your Foundation, Ronan. I know how much I believe in you and what that little face of yours is going to do. Now, here is this huge Rockstar who believes in you too and is offering to do whatever he can to help. Here is a Rockstar who is not only talking the talk, but who wants to walk the walk. He wants to meet with me before the end of the year to get the ball rolling on some of the things we talked about. I started to cry. I asked him where this huge heart of his came from. He sounded choked up and I just started thanking him over and over. We left it by him saying, he would not be in touch next year…. he would be in touch in a few weeks so we can figure out where exactly we can take this. I hung up the phone. I sat in my car and cried. For so many reasons. The timing of his phone call could not have come at a better time. You know what I have been struggling with. If this was ever a sign to stop second guessing myself and my voice, this was it. This is it. I know not everyone is going to be o.k. with the way I’ve chosen to express myself because people are afraid of the truth. I don’t want to appeal to the everyone’s of the world. Because the everyone’s of the world are not worthy of your beauty. I believe the world is changed by the unique people of the world who are not afraid to take chances, who think outside of the box, who bend the rules, who don’t conform because they follow their hearts. I believe the world will change because of the people like Bret Michael’s. A man who has such a big voice but an even bigger heart. This is so you, Ronan. This is all you. You would have been so proud today. I smiled and cried because this is so fitting for you. You and your love for all things Rock and Roll. You and your wild and free ways. Because ALL GOOD THINGS ARE WILD AND FREE. In life and in death the wild and free, doesn’t change. It lives on forever.

So, after I stopped pinching myself today, I started putting together a plan. I ran some things past your Daddy. I tucked in your brothers. I fell asleep for a brief amount of time thinking about how the power of you and our love, really is moving mountains. I am so thankful that there are such good people out there, who believe in us and who want to help be a change for things like Neuroblastoma so that one day, a mommy and daddy don’t have to endure what we are having to survive. I told your Daddy how the thing I loved most about the Bret Michael’s story was that how it just came to be, naturally. How it wasn’t forced. I truly believe that is how the best things come about. I don’t want to have to plead my case to thousands of different people as to why you are so worth fighting for. I just want to continue our love story that is never going to have an ending. I just want to continue to write the things I think or feel. And if people like Bret Michaels are so moved that they want to help… well, that shows me that what I am doing, is a step in the right direction. I don’t want the “you,” to get lost in all of this. I refuse to let you become a “brand.” I refuse to let you be treated like a business transaction. You are my son. I promise, I will not let the you in all of this, get lost. Ever.

That is all for tonight Ronan. Thank you for being behind this. I know this is all you. I know it is all you, who is touching so many people out there, who are worthy of the beauty you are bringing to the world. The timing of everything has been too impeccable for you, not to be the one behind all of this. You were much too wise for this earth. It was always so obvious to me how different and special you were. The fact that you are making things like this happen, makes me trust even more that our adventure is far from being over. I am just here to sit back and let you guide me. Thank you for guiding me during the times that I feel the most lost.I trust in you. I believe in you. That is enough for now. G’nite baby doll. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

  • Instagram is my BFF

    Pearl's ride or die boy for life. #ronan #fucancer #pearlandtdawg #fsu #toddleranddogwithacause 
#nakedpaintingparty #inappropriatepearl #lookatallthefucksshegives #assholeteddy #thatsforeatingherswimsuit Future Graffiti Artist. #ronan #fucancer #thisis2 #nakedpaintingparty #myspiritanimal #fsu #littleartist #toddlerwithacause Childhood cancer getting only 4% of federal funding is something to scream about...so let's put those tantrums to good use! Share a picture of your toddler having their most epic meltdown with the hashtag #ToddlersWithACause to bring awareness to childhood cancer! We're reposting the best ones!
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