It’s time to… #BeBoldGoGold!
Get your glitter on! We’re kicking off Childhood Cancer Awareness Month with a bang & a sparkle! Throughout September, we’re turning ourselves into spicy, gold human billboards for childhood cancer awareness and want YOU to join us! Welcome to the #BeBoldGoGold Challenge!
HOW IT WORKS:
-You deck yourself out in your gold bling or glitter—jewelry, clothes, facepaint, you name it, you rock it. You head out into a public place. Talk to at least one person about childhood cancer—tell them a fact, like that 46 are diagnosed with cancer every day. The goal is to raise awareness, so talk to as many people as you can & encourage them to take the #BeBoldGoGold Challenge
-Film/photograph your adventure, and tag us in it! We’re reposting submissions to our new #BeBoldGoGold Instagram, Facebook, and Twitter. When you post your video/photo, nominate 3 people to carry out the challenge by tagging them. They have 48 hours after being tagged to get their gold on! Make sure to hashtag #BeBoldGoGold and #RTF.
-At the end of September, we’re giving a prize to whoever goes all out and makes the biggest impact (aka raises the most awareness)! We’ll also have #BeBoldGoGold shirts available to purchase (link coming soon). If you would prefer to donate instead of (or in addition to) the challenge, visit: http://www.theronanthompsonfoundation.com/ & share the link.
The Challenge kicks off August 29th… stay gold!
Ronan. Oh, how I miss this little blog so very much. It makes me so sad not to be writing on here like I used to. This will always be my first home, my first comfort after a hard day, and where I found my love for writing. It’s hard to be away from this space that I used to find so much solace in. I cannot seem to keep up with life let alone a blog these days, not to mention this book I’m working on. And holy shitballs, I totally have forgotten how much work it is to have a new baby. Things are so freaking busy around here that I feel like my head is going to fly off and just explode. Oh, and my grief. I miss being with my grief a.k.a Inferno Fuckwad Bob, so very much. It’s not good for me to not have the time to nurture and sit with my grief the way Dr. Jo has taught me to do. I promise that I will make some time for it soon.
I can try to sum up what has been going on, but I have no way of remembering everything. Macy came into town for about a week and it was of course the most beautiful happy/sad/ time. She was in for work so she got to spend two weekends with us which is always so good for my soul. We laughed a lot and cried a lot as well. On one particularly hard Sunday, I found myself curled up in her arms on your bed where I just sobbed for you as the missing you part of all of this never gets easier. It still sends me into a whirlwind of complete and utter devastation at the drop of a hat. My time with Macy wasn’t all tears. We had the BEST time playing with your Poppy Roo and making up ridiculous songs to her like, “My two moms” which was all about the fact that Poppy does indeed, have two moms because if I wasn’t married to your daddy, I would totally marry her;) She is the best wife ever and one of my other little soul mates floating around on this earth.
Poppy came down with a little fever while she was here and we wound up in the waiting room at our pediatricians office where we know we really did look like Poppy’s two mom’s as we were resting each others heads on one another’s while Macy sat and rubbed my arm. I pretty much wanted to curl up and die when I saw Dr. Campbell exam Poppy and Macy’s eyes fill with tears as she did her routine exam which included the pressing down hard on her belly to make sure there was nothing out of the ordinary there. Macy knew why she was doing that and there was no stopping her tears from falling. I just gave her a weak smile as I watched her wipe them away. We talked about it afterwards and how hard it often is for me to walk back into our pediatricians office without you. Well, it’s always really hard for me to walk back in anywhere we used to go, without you. Macy watched as I had to fill out the new patient forms updating our family info such as kids’ names, ages, etc… I looked over at Mace and said, “I’m writing Ronan down, too. He is still my child.” Macy just looked at me and said, “Of course you should,” as she gave my hand a little squeeze.
My weeks have been filled with pretty much everything Poppy and just trying to keep up with her. I truly had forgotten what it is like to have a baby and now a very active baby. How 10 months already flew by, I do not know. She is the happiest little thing and it is so beautiful to see. She is my constant reminder that no matter how hard of a time I truly think I am having, because there still are times that those voices creep into my head and tell me that everything I am doing is wrong… Poppy is proof that I am actually doing alright. I don’t think she would be such a happy girl if I really were doing as shitty as I sometimes think I am. I know the weeks that are hardest for me seem to be the weeks that I am not sleeping well. It’s when my insomnia kicks in that the screaming in my head seems to always be the loudest. This past week has been alright and I am so thankful for that because if I would have checked in with you last week, I would have told you I had my bags packed to check into an insane asylum.
Your brothers and their never ending sports have been keeping me busy as well, although I give pretty much all of the credit to your daddy who is the one who really keeps them on track with all if it with his coaching of their baseball team, helping out with baseball, and flag football. He is the most amazing basketball coach and has your brothers team ranked #2 in all of Arizona for a fourth grade team. I know you would be so proud of that and basketball truly seems to have been such a saving grace to your brothers. It has kept them focused, on track, and it’s almost like a form of therapy for them. I could not be more proud of their dedication, will and determination.
I’ve been hiking, running, and doing my little Orange Theory Workouts like crazy. Exercise is still one of the main things that quiets the screaming in my head and gives me just enough of a break to stay sane. My time at the top of Camelback is always my favorite as it really is the time I feel quietest and closest to you. The other day while I was sitting on a rock, thinking about you, I had a little hummingbird fly right up to my face. I grabbed my iPhone thinking there was no way it was going to stay right there long enough for me to get a picture, but it did and I was able to snap the most amazing photo. It was a moment that I still have not been able to find the words for. I absolutely know that it was a little sign from you telling me that you are always with me. On Saturday morning I hiked Camelback with Tricia and Marisa- my two oldest besties from my previous life when you were still here, alive and well. It has been so long since I have been with the two of them and I cannot tell you how nice it felt. We had breakfast for Marisa’s birthday and then decided to brave it up Camelback Mountain in the middle of our little Arizona rainy day. Once we were at the top and had been sitting for a while, that little hummingbird flew right up to me again. It gave me goosebumps and chills all at the same time. I think it was your way of telling me that you were so happy to see me spending time again with my old friends, as you know they are so good for me. It’s taken me a lot time to be able to get to a place again where I can truly connect with the ones who knew you, loved you, and hurt so badly from losing you. For a long time the pain of being around them was just too much, but now I feel like I am at a place where I am ready and able to come back. I am just so thankful that they have both just been standing by for my return. I have missed them so much and Saturday ended up being the most perfect day. As soon as we were finishing up our hike, it started pouring down rain. Marisa said she knew that you made it rain at that perfect time because had it been raining like that as we were climbing down Camelback, one of us would have surly fallen and broken our necks as that mountain is beyond slippery and dangerous when it’s wet.
I am trying to make myself do things that I know make me feel somewhat good because I know the shit storm of May is fast approaching. Things like buying tickets to upcoming concerts like Lorde and Lana Del Rae, both whom I am so freaking excited for. Also things like spending time with the ones who I know are best for my soul like our dear Kassie who I spent all of Saturday with watching “Girls” episodes while eating Nutella straight out of the jar. Ummm… excuse me…. but where has this thing called Nutella been all of my life?! It’s like crack in a jar and I might have a problem especially during my nights of insomnia where I always find myself with a spoonful of it in my mouth. It’s the simple things that make me the happiest and I have learned that finding people who truly feed your soul is the best medicine around. I am very blessed to have the friends that I do, I know this. Your Sparkly was inquiring about my weekend and I told him I had spent Saturday night, cuddled up with my 23-year-old best friend. He said something like, “How come you love to spend so much time with people who are so much younger than you?” I just laughed and told him I like to hang out with people based on who they are as human beings and age is not a factor. I like to spend my time with the people who make me think about things, who push me to do better and be better, and who actually somewhat get me – himself included. I often feel like people get too caught up in this whole age thing in life. You should just be with the people that make you happiest and Kassie truly makes my heart sing. I wish so badly you could be here to know her, Ronan. Sometimes when I’m watching her with your Poppy sister, I close my eyes and pretend it’s you that she is bonding with, kissing on, and loving. I know that in a way it is and sometimes that even makes me smile.
Alright little man. I promise to write more later. So much more I need to tell you/fill you in on but this is all I have time for as of now.
I miss you. I love you. I hope you are safe.
Because of you all, the Spicy Monkey Spirit Hood was the company’s largest launch that they have ever had. Thank you all so much for buying them and making this venture so successful. Please continue to share this video with anyone and everyone. The more people who see it, the better. I love you all so much.
Now that Poppy is here, I’m ready to get my run on. This question is, will it be the full or the half? Will I train or not train? Still deciding. Hope so many of you will join me!!
At the link above you can register online OR print out the form and mail it. The most important detail about registering is that once you do, you must set up your fundraising page through our Fundly page which is linked from the registration page.
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.
Ronan. I am currently watching your Poppy sister play in her crib. At almost 6 months old, she has still not spent a night alone. Is that bad? I’m not sure as I had all 3 of you boys in your cribs from pretty much the time that you came home from the hospital. Babies in our beds happened sometimes, but not all the time like we are doing with this Poppy girl. Your daddy has been saying lately that it’s time for Poppy to go in her crib. I do my best, “No way, never happening” rant. It usually goes a little something like this, “Kids who sleep in their cribs, die. I’ve sat in support groups where I’ve heard at least 3 stories of 8 month old babies who just up and die. She’s not going in her crib, to die.” The part about the stories I’ve heard are true, and although I’ll admit I’m being a little dramatic, I’m not about to be separated through the night from your Poppy sister.
My mind never gets to be naïve anymore and I am more than paranoid. Here is another example of how fucked up and crazy it is to live inside of my head. I was out to breakfast with Fernanda and Stacy the other morning and Fernanda was standing up with Poppy, bouncing her to sleep. She started to sing her “Silent Night.” You know, the song I always sang to you, before you got sick. I completely freaked out. “YOU CANNOT SING THAT SONG TO HER! THAT SONG IS JINXED! IT’S THE SONG OF DEATH!” Fernanda and Stacy both just looked at me like I had 8 heads. “Sing her Twinkle Twinkle Little Star, like you used to do for Ronan, instead!” Poor Fernanda started singing “Twinkle Twinkle” and Stacy just looked at me and rolled her eyes. I didn’t want to get into the whole song thing, but I remember when you first got sick how I told Tricia and Marisa something crazy about that song. “I always sang him ‘Silent Night.” Is that because he’s going to die and now the nights are going to be silent without him?” They both told me that was not the case, but here we are today. I know “Silent Night,” did not have anything to do with your death, but what if it was the world’s way of telling me you were actually going to die. These are the fun things I get to think about now. No “Silent Night” singing for Poppy allowed.
The Gold Party came and went and I still feel like I am recovering emotionally from it. It was beautiful and sparkly, just the way you would have liked it. I spent the night with my most favorite people, minus a few who couldn’t make it. It truly was such a beautiful night. The night ended with me saying to Stacy and Fernanda, “I feel like Ronan would really want us to jump in the pool.” After a little Stacy magic which meant talking to the amazing W people who were in charge of the event, that is precisely what we did, in our fancy clothes into the pool we went. It was me, Stacy, Fernanda, and your Fairy RoMo. We laughed, swam a lap, and I sat at the end of the pool and cried with Fernanda. I said things like, “I still can’t believe he is gone.” I’ll never get over the shock of this all or come to terms with any of this. This reality never becomes any easier no matter how much time passes by. Everything hurts just as much, Ronan. But in that pool swimming laughing/crying moment, I still felt so thankful for all the beautiful people you have put in our lives. I am a lucky, lucky girl in that regard.
I’m doing my best here, but sometimes everything I am doing, takes a toll. Besides just how much I miss you, I really miss just being able to be a mom and that’s it. I am in a constant state of feeling like I am being pulled in a thousand different directions. I am about to scream, “TIME OUT!!” and run away to New York. I know that is not the answer, but sometimes I wish it were that easy. I’ve been getting a lot of emails about this blog and my not writing as much. A lot of you are worried and asking questions like, “Is this the end of the blog, because you are not updating it as much!” I don’t think I will ever stop writing this blog, but it is going to have to go on the back burner for a while as my book writing, running a foundation, and being a mom to a new baby, takes up any free time that I may have. It makes me sad as this blog has been my outlet and my therapy, for so long. I promise to get back to it when I can, but for now, other things have to take priority. I used to do all of my writing really late at night, but it seems that I cannot get enough sleep lately. That means, come 9:00 p.m., I am sound asleep with Poppy. Until that 3:30 a.m. witching hour comes about, then I am up, but I am usually playing catch up on emails or foundation things that I HAVE to get done. This leaves not much time for blog writing. I promise to try to be a little better as I do miss this and all of you, very much.
My grief has also been being ignored, which is not good. How is it that I am too busy, to be still with my grief? I’ll tell you how.
A new baby
Having two 10 year olds who are in 3 different sports/homework/projects that are never-ending
Trying to be a wife
Running a house
Trying to keep up with friendships and maintaining them. Being a friend while being a bereaved parent is REALLY hard work. Luckily, the friends I have, who have stayed around, are seriously the best. They are not even friends anymore, as I consider them family
Having a brother who I’m in a constant state of worry about
Trying to get back into a good exercise routine as bye bye baby weight is in full effect around here because my skinny jeans are just sitting there, taunting me in my closet. I know, I know, priorities and this one seems pretty stupid, but it goes back to my childhood and dad who was always calling my mom not very nice names. I obviously have deeply rooted issues thanks to this.
That leaves pretty much 0 time to spend with myself and with my grief. I tried to get up to Sedona this weekend, to see Dr. Jo, but it just didn’t work out. So, what’s a girl to do because I know what happens when I ignore my grief. I turn into a complete basket case who likes to take too much Ambien. Wait, before you freak out, that was the old, really broken and shattered me. Not the new mom to a baby, I know I cannot do that anymore and I would never, ever even take one, let alone 5. I am going to make a game plan this week with Dr. Jo about how I can get back to just being still with everything, even if that just means I do it while I am hiking with Poppy. If that’s the only time I get to be still, it’s better than nothing.
One more thing. Thanks to the Phoenix Coyotes, we now have some money to be more consistent about doing the Candy Cart at PCH. We have decided to start doing it once a month, which I am super excited about. If any of you have any non candy goodies, you would like to send my way, that would be awesome. We also bring things for the kids who cannot eat so they do not feel left out. Things like toys, books, coloring books, stickers, crayons… you get the idea. Everything must be new and not used. Please send to the P.O. Box where all of the foundation things get delivered. The address is below.
The Ronan Thompson Foundation
P.O. Box 44935
Thank you all so much for bearing with me during this quiet time and respecting that I am trying to do my best, I am just feeling a little overwhelmed right now.
It’s almost 9:00 which means I’m done for the day. Time to curl up with this Poppy girl.
G’nite Ronan. I miss you. I love you. I hope you are safe.
This is a great way to keep up with all we are doing. If you have Facebook, “like” our page! Thank you!
I just want to take a minute on here and say thank you to all of you. After being away for the summer, I came home to piles and piles of mail, gifts for Poppy, checks for the foundation, and I even got glitter bombed after opening up a box. You all make me smile, laugh, and cry on a daily basis and although I can’t write each and every one of you thank you’s… please know that I am doing it here, and I say thank you to you all about 100 times a day in my head.
There are so many amazing things going on. If you have a second, please read about what the amazing Jim Fry is doing below.
If you have the means, please donate to his fundraiser. Every little cent helps. If you don’t have the means, please spread the word for us. What Jim is doing is inspiring and so moving. Even with all of his determination, he knows it is nothing compared to what these kids go through and that is the most moving thing of all.
I feel a movement happening in the world. One that I am so touched by. I’ve literally received thousands and thousands of emails and letters from not only adults everywhere, but kids as well. Kids who I swear are going to change this world of pediatric cancer. They are holding fundraisers for Ronan, starting clubs at their schools, writing reports about the lack of awareness out there, doing amazing school projects about Ronan’s foundation, writing songs for him, doing their birthday parties and instead of gifts they are asking for donations instead, etc…. I live for the youth of America. I live for these kids who are going to grow up to do amazing things all because of a little boy they learned about because he will never get the chance. And they know that is so wrong and how it could happen to anyone; even them. They aren’t scared and running the other way. They are being proactive about this very broken world and to me, the mother of a child who died from this… that means everything.
I got sent a little poem from a 13-year-old girl named Eugenia. She had a class assignment and it was to describe a room and explain how the objects in the room say things about the person living in it. She chose to do it about my bedroom. The poem is below.
The light on at night illuminates how she doesn’t sleep well thinking about how she feels it’s her fault
The athletic shoes next to the door jog the idea that she runs to clear her mind
The pictures of her son all over the room visualize how they were close and that she misses him like crazy
His little bald head in the photos discloses that his life was a hard one even though it was short
His toys on the floor play out his innocence; how he was taken too young at 3 years old
The boxes of tissues whisper about how she spends every day crying over him
The spot on her bed between her and her husband portrays that he would sleep in their bed
The urn on her night stand murmurs that they keep him close and never let him go
The necklace around her neck filled with some of his ashes witnesses how she needs to keep him close to survive
The letters of apologies opened and unopened spell out how many loved ones he had
The bracelets with his name on them tie up the fact that they are trying to spread the word of this horrible disease
The computer on the floor next to the bed reminds us how she needs her blog to express her emotions of grief and pain and tell his story
The sonogram under the pillow wet with tears of joy and despair portraits how her new baby will be a girl; he always said he wanted a little sister
The deep sad look in her eyes sends the message to us that even on the happiest of days she will always be sad because her life is incomplete without him.
For Maya and Ro. Always for Ro.
This 13-year-old gets me better than most adults. As I read the words above, the tears just poured to the floor. I thought it was so heartfelt and beautiful. I am so moved by this younger generation of kids and the way they are helping move these mountains. Thank you, E. Don’t let anyone every dull your sparkle;) You are making this world a better place.
I’ve got to run now and work on this book.
I hope you all are well and please know that I know, that I would not be where I am today, without you. Thank you for helping me to fight for my little boy so much so that his name will never get lost.
Ronan. I haven’t cried much while being here at Nana and Papa’s. This distresses me. It makes me scared that this pain is becoming less and less and I don’t want it to be. This pain keeps me connected to you. This pain motivates me. This pain, has become my friend and I don’t want my friend to go away. It makes me think that somehow, I am starting to forget pieces of you and that scares the shit out of me. I don’t want to forget any part of you. I don’t want you to ever become a distant memory of what my life was like, a long time ago when you were here.
I miss so everything about you. I miss kissing your sweet little lips. I miss bathing your little body. I miss dressing you up like the little old British man that you loved to be. I miss tucking you in and having you wake me up in the mornings. I miss hearing you tell me, “You’re so cute!” or “You’re my best friend, mama. I love you so much.” I miss our whispers about life. I can’t believe you just closed your eyes to go to sleep and never wake up again.
I’m still here. Doing all these weird, normal things in life, without you. The teaching your brothers all the things I would have taught you. The giving your Poppy sister the million kisses that you would have given her. The watching of certain people in our lives who are literally just throwing it away, and pissing all over it.
All while I sit back and just stare with my mouth gaping open. I want to scream at the top of my lungs, “What is wrong with you, you ungrateful people of the world?! Don’t you remember that little boy? That beautiful little boy who would give anything to be here to live a life?! Don’t you remember how you watched me watch him die? How you watched death swoop in and steal him away as everyone around fought their hardest to keep him here? How can you be living this way? This selfish way of hurting yourself and the others who love you and have done nothing but try to support you and love you. You are here, you are alive, and Ronan can’t be, but this is how you honor him? By taking for granted the breath that you breathe and the life that you are so LUCKY to live? How hurtful that is to watch. How I feel like my guts are being ripped out from the insides as I silently scream to myself. How dare you take such a precious thing, for granted. Don’t you remember that little boy who you so claimed to love? Well, he is dead and you are alive and this is how you give thanks to being reminded of how precious life really is.”
I will never understand this. I get that everyone has their demons. I get that everyone has their “stuff” but I’m about fed up with the excuses being made to why a life is just here to be wasted.
Ronan, you should be here. I know you would have appreciated every single second and not wasted a minute on a poor fucking me pity party. You fucking had cancer and that never even caused you to have a poor me pity party day. You were always too proud to feel sorry for yourself. You were more man than half of the grown adult men I’ve known in my life at the age of 3. That speaks volumes.
I just bawled my eyes out writing everything above which is what I’ve been needing to do. I always do the most crying when I am writing which is why it’s not good for me to take breaks from this blog for so long. The book writing is different and I don’t seem to cry as often when I am writing it. I’m also just passed your diagnoses and that didn’t really make me cry, it only made me vomit uncontrollably for most of the night. Only on this blog do the snotty, ugly faced, can’t see out of my eyes, tears pour down my cheeks. I’m sure the further I get with this book, the more the tears will come.
I’m feeling a little better now except I’m all of a sudden so tired I can hardly hold my eyes open, but I will continue on.
Back to this life that is here now that I live without you. I’ll tell you the stories of the days filled with your brothers and Poppy. How Liam now runs to my car door before I get into the driver’s seat to open it for me. Just out of the blue, he started doing this and now he does it every time I get in my car. I know your daddy taught him this or explained the rules to him on “How to be a gentleman.” Or maybe Liam just picked it up from always watching your daddy do it for me. It used to annoy the shit out of me. Like I was up on my high horse screaming, “I’m a feminist! I’m independent! I DON’T need my car door opened!” I’m come off that high horse and just let myself appreciate how lucky I am to have a daddy like yours who doesn’t let the little things, get lost.
Quinn has been doing a great job of helping to fill your shoes and take care of me. He always seems to be right by my side, making sure I’m o.k. “How are you feeling, mom. Are you o.k. today, mom? Is there anything else I can help you with, mom?” He may be asking these things while pounding Liam over the head (there has been a lot of fighting lately it seems) but he is still asking.
And then there is your Poppy sister. Everyday she reminds me of you. Her eyes are getting bluer and bluer by the day. I’m holding my breath that they will stay blue. I know in the big world scheme of things, it doesn’t matter, but my gawd that would be nice.
Today was one of those days where I felt so inspired and so giddy by the things I see going on in the world/all the good people out there that it left my head spinning.
I got a Fed Ex package and squealed with delight as Quinn brought it to me. I ripped it open to find something I have been waiting for, very impatiently, for days. Your very own SpirtHood! I burst out into tears as I examined it and watched Quinn put it on his head. I contacted SpirtHoods about a year ago telling them how much you loved yours, asked them if they would donate some to us to hand out for all the sweet bald-headed kids on the cancer floor and that lead to this.
“I was wondering if you would consider making a Spicy Monkey SpirtHood in honor of Ronan with a portion of the proceeds going to his foundation.”
We talked about what it would look like and decided that the inside would be purple for you and there would also be a big fat Gold Ribbon for childhood cancer on the inside as well.
The owner of SpirtHoods, Chase, was on board immediately. I was excited then. I am over the moon exited, now. To actually physically have the sample in my hands today felt so amazing. Like it was actual hard proof that your little short life, is so impactful. I emailed Chase back and told him thank you so much for not only supporting you, Ronan, but for all the awareness this will bring for these kids who so desperately need it. Not to mention, all the bald headed babes they are going to help keep warm in the artic tundra of hospitals. I’m so excited and so proud to be a part of something that I know you would have loved. It may seem like a small feat in the grand scheme of things, Ro, but to me, it means the world.
This is all I can do tonight, little man. I need to blog about so much more!
OMG! Like our GOLD PARTY September 28th that Bret Michaels is throwing with us. I promise more details soon on that!
And OMG! The family pictures we had taken today, minus our family because it was just me, Poppy, and your brothers. It felt so weird, but I got through it as best as I could. I need to brag my life away about the sweet soul who took our pictures, etc….
I promise to do so, soon. I am just too wiped to do so as of now. Have to get some shut-eye.
I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.