Ronan. I did something a couple Saturdays ago that ended up being not all that smart. I was in a mood. It was a Saturday and the weekends around our house are still really hard on me. So much family time that I know you know I am thankful for, but weekends always seem to hurt so much more. We spent the morning at your brothers’ basketball games, a place where I am normally my happiest. On this particular day, not having you there to watch and cheer for your brothers was just too much missing you for me to handle. I did my usual put on my happy face while I did my loudest screaming my head off for your brothers as I watched them dominate on the court. After another victory (insert proud bragging rights here) we all went home and your brothers ended up getting invited to go swimming with some friends. I volunteered to take them as Poppy was getting ready to take her nap. I threw on my hiking gear as your daddy looked at me and said, “You’re going hiking? It’s the hottest part of the day and about 110 degrees outside. You shouldn’t go.” Your daddy knows me well enough though to know that his words were falling on deaf ears. I was on a mission and destroying Camelback Mountain during the hottest part of the day was what I was set on doing. There was no telling me otherwise. I packed my backpack full of a ton of cold waters, made sure my phone was totally charged as bounced out the door to drop your brothers so I could take my anger out on something… anything to get me through the day.
Hiking Camelback on a normal temperature day is not an easy feat. Throw in the scorching heat, not to mention my anger/sadness/grief and the inferno that day went to a whole different level of hell. I climbed as fast as I could, feeling the pain as my hands burned every time I would go to grab a boulder to pull myself up on. I could only let my hands touch them for a few seconds before I would end up pulling them away so they didn’t get burned too badly. Not many people were on the mountain that day, but yes, there were a few who were just as crazy as me. I found myself wondering if they too had dead kids or parents or lovers or friends. Was it possible that somebody up here hurt just as much as me? What in the world had they endured in this lifetime to make them climb up a mountain during such an intensely hot day?? I let all these thoughts fill my mind as I continued to climb. I had to stop quite a few times which I normally don’t do. After about 45 minutes, I knew I had enough and I made myself turn around even though I was still about 5 minutes from the top. I’ve never not made it to the top, so this was a first and I was not happy about it. But I also know my limits and just how to come really close to the edge of things in life without not totally falling the side of the cliff. I had just turned around when I noticed a guy in black shorts coming up as I had to move out-of-the-way so he could pass me. You always give the right away to the people coming up, at least on my mountain where I follow and respect all the rules that my veteran hikers have put into place. I didn’t think much of this person passing me, but I gave him a quick hello, made eye contact, and really wanted to say, “What is causing you so much pain to hike on a day like today?” I made my way down the mountain, slowly. I started to get really disoriented and dizzy from the heat. I have hiked that mountain no less than 300 times, so I was not worried about getting lost, but I was worried about passing out. I got to the part where you have to hold onto some rails to climb back down. I know I was delirious at this point because my head starting saying things that maybe used to fill my mind a lot, but do not very much anymore. I heard myself talking about death, dying, and was I dead?? Maybe I was really dead and this was really hell. Did I want to die? I was so out of it at that point that I couldn’t really answer my own question. I let my mind drift and wander to those morbid places for a couple different reasons. One being that I really wasn’t in control of the thoughts that were taking over my brain and two because sometimes I just have to go there… to the darkest of the dark places. I live in that place, but I don’t visit it very often anymore so when it’s time to take a little vacation to all things dark, I just allow myself to go and don’t really question it much. I cannot live in the constant sunshine every day of my life as it gets so exhausting to do so.
I ended up calling your daddy at some point and I don’t remember what I said, but I think I told him I wasn’t sure if I was going to make it to the bottom. He offered to come and get me and of course I said no. Don’t forget I have that whole ‘I’m not a princess and I don’t need saving’ thing still going on. I made it to the car where I blasted the A/C and sat for a bit as I recovered before I attempted to drive just a few minutes home. I came crawling through the door as your daddy handed me a big Gatorade and watched me sink down to the ground where I passed out for a few minutes on our cool tile floor. I opened my eyes just in time to see him hovering above me and heard him say, “Have you had enough self-torture for the day?” For the day, yes. For life, never. I rolled my eyes and went to our bedroom where I showered and passed out for a good hour or so only to wake up to a raging headache that was brought on by my stupidity. Do you think I learned my lesson and will never do that again? You know me better than that, Ronan. You know I’ll be back up that mountain in no time to do it all over again. I’ve been hiking it still, but going really late in the afternoon where the temps are in the low 100’s. Those temperatures are easy to hike in for me compared to the 110 in the middle of the day.
A couple of days after my Saturday inferno, I heard on the news that a hiker was missing on Camelback Mountain. I didn’t think much of it until they mentioned he had gone missing on Saturday, around the same time that I was on the trail. I googled the story and found it almost immediately. He was 23, from Washington State and his dad was pleading for his son’s life. I tried my best to remember if I had seen him on Saturday and my mind went back to the guy in the black shorts. Could that have been him? In my mind, I thought he looked much older than the person I was looking at on my computer screen before me, but still I couldn’t shake the thought of somebody missing on that mountain. My mountain of all places where I have hiked over 300 times and it’s one of the few places that I can count on in life to accept my grief, nurture my grief, love my grief and never judge my grief. My place of solitude and peace and now you’re telling me there is somebody missing up there? I couldn’t stop thinking about it and didn’t know how he hadn’t been found. It’s a big mountain, but not that big and the helicopters/search and rescue had already been looking for days. On Tuesday, I was restless and left the house after your daddy got home to go hike Camelback to see if I could maybe help look for this kid. It had been 3 days and I knew if he was up there and found, that it was not going to be good. Still, I asked whoever is in fucking control of this life, for a miracle. Just as I pulled in, I saw that the mountain was closed and a sign was posted saying a rescue was in progress. My stomach sank as I drove off to hike my little back up mountain as I watched the helicopters hover about. Please let him be alive. Please, please, please. I came home and checked the internet for the news. A few hours later the updated story was posted. A hiker was found dead about 200 feet from the top of the mountain, but they would not confirm that it was indeed the hiker that went missing on Saturday. The next day it was confirmed that it was the missing hiker from Washington State. My thoughts immediately went to his family as I could actually imagine what it was that they were feeling due to knowing what it is like to know your child is dead. The shock. The numbness. The pain that hurts so badly that it is almost indescribable to put into words. I know what all of that is like and I’m just sorry that those parents now do, too. It’s been over a week and I can’t stop thinking of this kid and what happened. I will never be able to hike that mountain again without thinking of him and his family. It’s just beyond sad.
I talked to some of the regular hikers after it happened. Eric’s body was found about 500 feet below the summit. They showed me where he was found as I wiped the tears away from my face. The cause of death has not been released, but I imagine it had to do with the heat and the fact that he was not familiar with the mountain which caused him to end of getting lost and disoriented. The whole thing just makes me incredibly sad and not that I need it but it is a reminder of how precious and short life really can be. And yes, it is also a reminder that I know I need to be careful up there because I do not really want to die. Sometimes I just want a break from all of this pain though. I maybe need to find a better way to help with that instead of hiking up a mountain during the hottest part of the day.
Your brothers turned 11 yesterday, Ronan. I cannot believe I have 11 year olds and more so I cannot believe I am lucky enough to have the amazing 11 year olds that I do. I could not be more proud of the little men they are becoming and I know without a doubt they are a big reason of why I have been able to survive the loss of you. They have saved me and someday, I will tell them this when they are a little older to understand exactly what that means. You were missed yesterday so very much.
I’m going to run now. It’s 4 in the morning here and I’m back to keeping the hours of a vampire. Up most of the night and functioning on just a few hours of sleep. It’s the only time I’m able to work on this book writing as Poppy takes up any other time that I have left. Dr. Sholler is actually going to be at our house in about an hour. She is here for the next few days and I’m taking her up Camelback for an early morning hike, before it gets too hot. No way I would ever take that precious cargo to the inferno. She has too many kiddos to save.
I miss you. I love you. I hope you are safe.
Bye, little man.
Ronan. We are back home and I am almost done with the whole holiday/celebrations of all things that still feel weird without you. My birthday is Saturday and I promise you I am trying to have a super good attitude about it, but I don’t really feel much like celebrating. This does not fly with your daddy as all he wants to do is make sure my day is overly the top special. What is the nicest way to tell him that over the top special to me would be hiding in bed all day, under the covers? I can’t do that though. It would break your brothers hearts so I will suck it up and do what is best for them. I will smile when I blow out my candles and make the same wish I do, every year. The one where I just hope so much that you are alright, safe, and hope that someday, I will see you again. I will smile for the picture that I know will be taken and I will forever wonder how in the world I can look so happy, in a picture when I feel like I am still so broken, sad and shattered. It truly is amazing the things we as adults can do to survive such horrific pain.
Washington was all things perfect. Well, almost;) I basically go there and hibernate for the winter. I feel like I did a lot of sleeping, which I never do well here. Every night was the same as I would crawl into bed with Poppy and pass out until she woke me up. Quinn and Liam have their own bedroom there, but they prefer to sleep in my room with me every night in another bed that is in the room. It’s like a big slumber party and is one of the things in life I love so much. Every morning when Poppy would wake up and I didn’t want to, Liam would grab her and say, “Mom, do you want me to take her downstairs and play with her so you can sleep a little longer?” Best brother ever and I happily thanked him and told him what a great big brother he was as I snuggled up to Quinn to sleep for another hour or so. I don’t know if it’s the fresh air, cold weather, or just the comfort of being at home that knocks me out, but it always seems to do so. I also spent a lot of time running which felt so nice. I finally feel like I have my running mojo back and it always seems to come back when I am there. I have a marathon to run in a couple of weeks so I made myself be pretty disciplined with my fake marathon training. I was pretty consistent with running my standard 3.5 miles just about every night. I somehow talked Brianna into running this thing with me. Must be the older sister influence;) She ran with me at home and we even did 7 miles one night which was surprisingly pretty easy. Her little 19-year-old body will be just fine.
Back in Arizona is hard for me, I’m not going to lie. The first night we got home I felt like I was sucker punched as I walked through the door to our house without you bouncing behind me. I handed Poppy to your daddy as he hadn’t seen her in a few days, told him I was exhausted and asked him to please take care of her so I could go to sleep. I knew the sleep wouldn’t come as all the voices in my head were screaming so loudly. I haven’t touched anything to sleep in over a year, but that night I needed to just pass out into oblivion for a solid 6 hours so I did. Oh, how I sometimes miss the days of complete darkness with my old friend, Ambien when the world just quietly slip away. I had to give up my love for that shit a long time ago due to loving it a little too much, but I think once a year is an o.k. compromise. Sometimes I just need a night of blackness. I had warned your daddy, so he was on Poppy duty and was happy to do so as he had missed her so much.
Speaking of Poppy, Ronan. Uhhhh…. remember when I asked you to make her “extra spicy?” It is too late to give just a bit of that spice back??? What in the world happened to my sweet, cuddly baby girl who just cooed and started sweetly into my eyes all day long?! Now my days are filled with this very wild, strong-willed girl who reminds me of a little boy I once knew so very much. She has turned into such a little spit fire who is on the go all the time and is constantly babbling, screaming (in a good way) and is into everything. To say she keeps me on my toes is an understatement as I am chasing her around all day and she is only crawling. Imagine what she is going to be like once she starts to walk! You know I am loving every second of it and so are your daddy and brothers. She is full on obsessed with your daddy, too. In a way that I really don’t remember any of you boys being. If we are in a room together with her, she wants your daddy over me. I secretly love it as it is amazing to see the bond between a father and a daughter. It’s all so new to us all but so beyond sweet. Your daddy is in total heaven about it.
Alright little man, this is all the update I can do for tonight. Back to writing this book I go. I miss you. I love you. I hope you are safe.
Ronan. Thanksgiving is over. There was no Macegiving this year, as our sweet Macy that saves us on every holiday, could not swing coming in. She was heartbroken about it, as were we. We all missed her so very much, but we will be seeing her soon in January which we cannot wait for. Of course I got all crazy trying to make a plan for Macegiving, without Macy. After a lot of panicking in my head, crying, and thinking how can I possibly do another holiday without you? I aborted freak out mission in my head. I made a different plan instead and it was called, “Stop putting so much pressure on yourself because it’s just another day.” I gathered my thoughts and took some time to think about what this Thanksgiving/Macegiving/Fucksgiving meant to us as a family. I talked to your daddy about what he wanted to do and what I was wanting to do and we came up with the most non-stressful, no pressure plan ever. I knew that I wanted to go to Phoenix Children’s Hospital that day for a couple of hours to take around your candy cart, so I gathered up some of my best “homies” and that is what we did. The hospital was packed, unfortunately. I was hoping it would have been empty on this holiday as it’s so hard to be stuck in a hospital on any day, but Thanksgiving day just seems extra unfair. I was glad to be there and it felt good to make so many kids/parents/siblings smile. Doing the candy cart and handing out gifts is really what got me through the day. We then came home to a super low-key Thanksgiving that wasn’t so bad and it almost just felt like another day. We hung out, ate, watched football, and had ice-cream cake for Brianna’s birthday. You were of course, were missed by us all.
Things seem to be moving at an incredible rate and not slowing down any time soon. Some how, your Poppy sister is 8 months old today. How in the world did that happen? She is getting to be so much fun and your daddy has started calling her, “The Honey Badger” because of the way she is so determined about everything in life. She is already so feisty and fun and has keeps us laughing a lot. She has been so good for us all, Ro. Your brothers absolutely adore her and she has brought back such a positive energy to our entire family. Needless to say, I don’t know what we would do without her and I am so very thankful for this little gift you have given us. I’ve said it before, but she truly has helped to save not only my life, but my soul. Tomorrow, also makes 31 months without you and I still don’t know how that is possible either. The fact that 3 years without you is approaching soon still leaves me breathless with the hugest pit in my stomach that I am starting to really believe will never go away.
I’ve also been having a really hard time writing this book. So much so that the other day, I had a full on break down about it. I’ve been writing a ton, Ronan, but that is it. Only writing and not feeling a thing, while writing. Uh, that has not been good for me at all. Part of the reason I am doing this book is because I have certain things I need to feel while writing as it has become my form of therapy. I’ve been feeling numb and stuck, which has been leaving me frustrated beyond belief. The other night when I was in the middle of one of my pity parties to your Sparkly, I totally lost it and was about to the point where I was not sure what to do or how to fix this problem. I took a little time out, had a long talk with you and what you would want from all of this, and all of a sudden it all became so clear to me. I sat down, printed out all of my words and announced to our entire house hold, “I’m starting over on this book.” Liam and Quinn were like, “WHAT?! You can’t start over! Look at all you’ve written!” Your daddy chimed in, “Boys, sometimes that is what happens and we need to just be supportive of your mom.” I started writing right then and there and I cannot seem to stop. Finally, it feels right and I am so excited about the way I am doing this. I am basically just using everything I had written out, as a road map to help me guide me along. I’m also taking a little advice from my new pal, Ernest Hemingway who says, “Write hard and clear about what hurts.” That is precisely what I am doing, all while keeping you right here with me. Thanks for the good pep talk the other night, little man. I really needed it. Now, back to book writing I go. I’m sorry for the short update, but late at night is the only time I really get to sit down and write, so I have to focus on this book.
I miss you. I love you. I hope you are safe. Sweet dreams, best friend.
You asked for this, my childhood best friend. You asked me to give you some motivation to run the full Rock-n-Roll Marathon in Phoenix, this January for Ronan. You, of all people. My childhood best friend who looks like a supermodel, with your long, lanky 5’10 body and 0% body fat. You, my childhood best friend who once considered the high school required one-mile run, to be a death sentence. You, my childhood bestie, who has never in her life, considered herself a runner. You say you want to run a full marathon for the first time and in turn, I say to that… you are crazy. But you know how much I love crazy, so of course this is something I can fully get behind.
You see, it takes crazy person to do something like this. A half marathon is a victory in it’s own right, but a full marathon is a whole other ball game. A full marathon requires dropping every fear you have, and believing in yourself in a way that you never have before. There will be sore aches, blisters, toenails falling off, fatigue, cursing, screaming, crying, puking, (sometimes pissing and shitting yourself-serioulsy, I’ve seen it happen) and of course, wanting to just plain quit. I guarantee in the middle of all of this, you will hate me. But then you will remember why it is that you are doing this. You are doing this because you CAN, and Ronan cannot. You are doing this because you are alive and to truly be alive, we must do things that are outside of our comfort zone, otherwise, what is the point of life? You are doing this because you are so thankful that you are alive and healthy and your beautiful kiddos are as well. You are doing this for not only Ronan, but for all the other kids with the bald heads or who are in shallow graves/pieces of ashes. You are doing this for them, because while you are doing this, thousands of kids are sitting in hospital rooms, having chemo pumped into their tiny bodies, are hooked up to awful machines which means they have to stay inside all day when all they want is to breathe in the fresh air and play outside, but they can’t because they are sick and being robbed of their childhood. They are having body parts cut open, are too weak to open their eyes, are having radiation and transplants to try to save their lives, and you are not. You are healthy, here, and living a beautiful life that you are so thankful for. And while you are doing this, I will be right by your side, running this with you. Fuck. Did I just say that? Yeah. I just said that. I’ll run this marathon with you, even with my bad knee that is trying to tell me my running days are over. You know what I say to that knee? Fuck that knee and fuck cancer for killing my baby, too. I’m in this with you. I don’t care if I have to crawl to the finish line. I am here, I am healthy, I am alive, and I can run another marathon. I’m not letting you do this, without me.
So, you start your training and I will not. I won’t train for this because I’m training everyday of my life anyway living here without Ronan. Let’s raise a ton of money, and run this thing, together. Deal? I hope so, because I’m not doing this without you. There is no one else I would rather have by my side (besides Ronan) than you. The mom of the little girl, that my son was supposed to marry. They would have been the cutest couple, ever. The mom of the little boy, who’s big blue eyes and extra “spiciness,” remind me so much of Ro. The mom who knew my baby, loved my baby, and is still here, fighting for my baby for no other reason than because at the end of the day, you know what truly matters in life and how wrong it is that Ronan will not be waiting for us at the end of that finish line. If you are doing this, I am doing this. Laverne and Shirley until the end of time. I love you so much.
Now, it’s time to find me some corporate sponsors to do my “10 days of fake training,” again. We have some kids to save and a center to build! Hey all you little blog readers! Email us if you know of anyone that wants to sponsor me! I’ll dress up all crazy like I did last time for the peeps that throw in the most money, we’ll post the pics, and promote the awesomeness of the good deed they are doing. Or come out and run with me! Or at least cheer for me on the sidelines and glitter bomb me! Let the games begin!
Ronan. Only for you would I do this again and again and again. Anything for you. Always.
I miss you. I love you. I hope you are safe.
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.
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.
Ronan. Last week, I got to see the magic that Alexander has put together with the SpiritHoods video. He’s been working like mad on it, and keeping me so very in the loop. When the link finally came through the short version, the one that will air on their website, I took a deep breath as I sat down to watch it. I put Poppy on my lap and she watched with me. The tears were almost immediate. It is 5 minutes of absolute perfection, absolute heartbreak, absolute beauty, and absolute truth. I am so proud and so thankful for people like Alexander who have come into our life. The moment I set eyes on him, I knew he was the perfect person for the job of telling our story in a documentary type of way. I felt so comfortable with him and an immediate connection. I wasn’t wrong. Not only does Alexander feel like a long lost brother to me, it turns out he is insanely talented and I could not be more proud of what it is we have done together. Oh, and he also happens to have a totally kick ass wife who I am equally as in love with. I cannot wait for you all to see this, and then to watch as you all buy up the SpiritHoods like crazy. They turned out so adorable and only Ronan being here to rock it, would make it even better than it already is. I AM SO PROUD.
Last week was an insane week and with foundation stuff pretty much happening around the clock, I knew I needed a small break. Or, more like your daddy knew and pretty much told Dr. Jo that I was coming up to Sedona on Sunday to spend some time with her and do a little eco therapy. I drove up with your Poppy sister in tow. We arrived late on Saturday night and woke up in the morning, ready for to go on a hike through the beauty of Sedona. On our hike, we got into my much needed therapy. We talked about where I am in my grief process and I told her all about my hard week last week where I spent many days, THINKING about doing things like driving off a cliff. I still have those thoughts, although they happen less often. Our little hike turned into a 5 hour massive hike with your Poppy sister on the front of me. We only stopped one time to feed her and let her stretch out. The rest of the time the only sounds we heard from her were the sounds of her coos and giggles. That baby, I tell ya. She is amazingly special. I’ve never known a baby that would go on a 5 hours hike and be happy as a clam the entire time. She is such a sweet, sweet girl. Most of the hike, we talked about this whole grief thing. I told her how I constantly feel like a bunny rabbit, digging a never ending hole, and trying to fill the hole with “stuff” when I know the hole is never going to be filled again. It’s that taste of happiness that I had with you that I so badly want again, but no matter how beautiful this life is, I’ll never get back the happiness that is missing; that being you. I have learned to love my grief, for even as painful as it is, it keeps me connected to you. So, when I am not spending enough time nurturing and sitting quietly with my grief, that is when I tend to get into a bit of trouble, emotionally speaking. Some people want to run away from their grief, but there is no out running this. Your grief will always catch up to you and never gets tired of chasing you. I don’t want to outrun this, but the fact of the matter is, it does become heavy to carry and sometimes hard to manage. That’s when I have to check in with myself and do things like a 5 hour hike with Dr. JoRo. Things like that, help me with all of this.
I have so much going on around here that I don’t even know which way is up anymore. After dropping your brothers off at school in the mornings, I have been making myself take your Poppy sister up our mountain. I know that in order to be productive during my day, I do need to take a little Mama/Ronan time out. This morning I had Poppy on my front and your backpack on my back like I do every time I hike. You know that little backpack from Pottery Barn Kids with your name embroidered on the back of it. As I was coming down, a man passed me. He said, “Is that your son’s name, Ronan?” I was caught a little off guard and but managed to nod my head and give him a smile. He said, “That’s my son’s name, too! He’s 7.” The only thing I could say was, “It’s a great name.” What I really wanted to say is, “You are so lucky to have a 7-year-old Ronan.” I hiked the rest of the way down, feeling sad and trying to imagine what it must be like to have a 7-year-old Ronan, too. That pretty much threw me off for the rest of the day, but somehow I still managed to be productive around here.
Halloween is approaching. Is it really another Halloween without you? I would still let you be anything, if you were still here. Your brothers are all excited and I took them “Booing” the other night with some of their friends. It hurt to be doing such fun/funny things without you. Poppy seems pretty excited about Halloween, too. Today, she asked me to take a pumpkin, carve out the top and some slots for her legs so I could stick her in the pumpkin and take a picture. O.k… so maybe she didn’t ask me, but that’s totally what I did to her. She loved it for about 30 seconds, then when she realized she was naked in a pumpkin, she got pretty mad at me. I took her out once she started to protest, but I did manage to get some great pictures out of the Poppy the Pumpkin photo session. It was kind of the cutest thing ever.
Alright little man. I have to sign off for the night. Time for my late night book writing session to begin. I miss you. I love you. I hope you are safe.