All posts tagged phoenix children’s hospital

I still love this list. How to Live like a ROckstar

 

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People have asked, what they can do, besides the obvious which is donate to Childhood Cancer, to help make a difference in this fight. If you want to donate to Ronan’s Foundation, even if it is just a dollar; please do so. I have almost 12 million hits on this blog. Can you imagine if every person that has read this, donated just one dollar? Or five? That could do so many amazing things in our efforts to support research for Childhood Cancer.

I’ve thought up a list. A very unconventional list, because it is not just about bringing awareness to Childhood Cancer. It is also about living a life that Ronan would be proud of. It is about living a life, that Ronan would have given anything for; to LIVE. It is about being the BEST version of yourself, that you can possibly be. This list will grow and I hope it only gets better. I’m still young. I still have A LOT to learn, mistakes to make, things to regret…. but as of now, this is my list. This is a list that has been inspired by losing the life of my son and trying to become a better human being, because of it. I hope someday, that I am able to live my life doing everything I have written below. This list, gives me hope, in my darkest hours.

1) Be thankful. For all that you have. No matter how much or how little. If you have kids, be thankful that they are healthy. Nothing else matters. If you don’t have kids, be thankful for your health or the health of the loved ones in your life. Just be THANKFUL. And know what it truly means.

2) If you’re not happy, change your life and become happy. Happiest people are the most beautiful. Become the happy person you want to be. Life is too short, not to be happy. Ronan almost lived 4 years on this earth. I’ve never in my life met a happier person then he was and look at everything he endured. Cancer never got in the way of his happiness, until the last week of his life when his life was no longer his to live. He was ROBBED of his happiness. You do not have to be; so stop complaining.

3) Volunteer. At a Homeless Shelter. At an Animal Hospital. At The Ronald McDonald House. Whatever you are passionate about. Just do something to make a difference. Volunteer at a hospital…. there are so many sick babies who need people to hold and love them. Get involved. DO SOMETHING. ANYTHING.

4) Donate BLOOD or PLATELETS. It’s not that hard. REGISTER to become a BONE MARROW DONER. You could help save someone’s life.

5) Scream about Childhood Cancer Awareness with me until people start to listen. Write to local companies, small companies, big companies, your favorite Celebrity, the Media, Congress, The President, The White House, anyone you can think of; until people start to listen. If there are enough of us screaming, they will have to at some point. The lack of awareness/funding is UNFUCKINGACCEPTABLE. Media is very powerful. We have to get them on our side.

6) Educate the people around you about how this can happen to anyone. If you want your child to get a Urine Test, ask for it. Knowledge is POWER. Learn the FACTS about Childhood Cancer, like it is your bible. Know what it is you are passionate about, and why. Educate people about this blog. Scream about Ronan’s story to anyone who will listen.

7) Rules were meant to be broken in life. Break down the doors. Don’t give up if you are told No. I don’t care if it is a hundred times. Nobody ever made history in this world, by playing by the rules. REBELS RULE. Embrace your Inner REBEL. Ronan would love this so freaking much.

8)  Question everything and follow your instincts. Listen to you heart as it is more powerful than your mind.

9) Take a Holiday, once a year and do something completely selfless. How amazing would it be if everyone stopped worrying about themselves, gifts, fancy clothes, on a Holiday and took the time to go to a local Hospital to drop off toys or gift cards to the parents who are struggling/sad/lonely/or depressed because their “Holiday,” now consists of living in a hospital, fighting for their child’s life. Take our self-indulgent Holidays and bring the smile to the face of a child or parent who could use it a thousand more times than you. Take your kids with you and tell them why you are doing this and why it is important.

10) Please stop to enjoy the music in life. By blasting the music you love, the loudest it will possibly go, while having an insane dance party with yourself or your kids. They will love you more for it.

11) Be inspired and inspire other people around you. Find your inspiration. Move mountains with it. Form an army. Join an army. Make something happen.

12) Get off your ass and exercise. It will change your life. It is saving mine. Run for Ronan, because he will never get the chance to run a marathon with me, like I often dreamed of. Swim for Ronan. Bike for Ronan. Walk for Ronan. Ski for Ronan. Do it for yourself and for all the other kids who will never be able to, because they are not among the living anymore. Be HEALTHY. Eat better. Stop freaking smoking. It’s insulting. Not to mention, just plain gross. YOU are better than that, otherwise, you would not continue to read this blog.

13) Get angry. But turn that anger into something positive. Do NOT start dealing with your anger by hitting the bottle, hurting others, or doing drugs. Let your anger fuel your fire, but in a positive way.

14) Pursue your dreams. If they don’t come true, at least you know you tried. Do not be afraid to fail. You should be more afraid of not trying and never knowing.

15) Continue to talk about Ronan, his story, his fight, his beauty, his life, his death…. Help me honor him by continuing to believe in him the way you do. Take my pain, of losing him, and continue on this adventure, with me. I am humbled and so thankful by all of you who continue to want to support and love Ronan. It makes me stronger. It makes me feel as if I can really change the face of Childhood Cancer because of the endless amount of love and support.

16) Love your family and friends. Cut the drama out of your life if anybody brings it to you. Stop apologizing, but apologize when necessary. Be true to yourself, your beliefs, your life.

17) Never settle. EVER.

18) LOVE with your whole heart, soul, mind and body. Make sure the people in your life, are worth it. If they are, give them everything you have.

19) Stop freaking out because your kid colored on the wall, with a black Sharpie, and then peed all over the carpet. Be glad you have a kid to create such a little creative piece of Art for you. Embrace their Inner Spiciness.

20) Teach your Children. Educate them on how lucky they are. Teach them to be kind to others. Don’t lie to them. Let them make mistakes. Guide them, push them, pull them, engage with them. Be present. Life is hard. Let them know this, without having to teach them the way that Liam and Quinn have had to learn.

Alright lovelies. This is my list for tonight. I’ll add more as I think of things. Don’t thank me for it. I had nothing to do with it. Thank Ronan. Kiss your babies. Love yourself for being so beautiful, that you want to be a part of the change.

I love you all. Ronan loves you all. I know he would be proud of this list.

51 Comments
by rockstarronan on March 27, 2013  •  Permalink
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Posted by rockstarronan on March 27, 2013

http://rockstarronan.com/2013/03/27/i-still-love-this-list-how-to-live-like-a-rockstar/

The day we pretended like you were alive

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Ronan. Today, I got a phone call from your brothers’ school in the middle of the day. A phone call like that is never good. I picked up and listened as the school nurse informed me that Liam got hurt at recess and I needed to come and pick him up because he needed stitches. She was a little panicky which led me to hauling ass to the school as quickly as possible. Once I was there, I checked out the damage done and it didn’t seem too bad. She cleaned out his elbow and he actually did have a pretty deep football war wound. She told me she was pretty sure he was going to need stitches. I put Liam in the car and calmed him down. He was pretty freaked out about the stitches part, but was trying to act so brave as he hid his tears. I told him stitches may not be necessary and told him if they were, the doctors have some great numbing medicine that they would put on it so he wouldn’t feel a thing. I called our doctor’s office and I was informed that they wouldn’t do stitches on the elbow, so we should head down to PCH. Down to PCH we went for our little adventure of the day.

We got a room pretty quickly and the nurse in charge came in to check out Liam’s elbow. He started asking all sorts of questions like how did this happen, are you in pain, etc… All the basic questions that are necessary. I stayed out of the question answering part of this as I am aware that your brothers are big enough to speak for themselves but being the mother hen that I am, I always want to swoop in and answer for them anyway. I let Liam do the talking. After all the formal questions were out-of-the-way, next came the fun ones. “How old are you? What grade are you in? What’s your favorite football team?” Liam answered them all without skipping a beat. The next question came. “Do you have any sisters or brothers?” Oh god, I thought to myself. How is he going to answer this? “Yes. I have 2 brothers and a baby sister on the way.” I let out a sigh of relief. The next question came. “How old are your brothers?” Liam answered, “My twin brother is 9 like me and my little brother is 4.” I looked up at Liam as I wasn’t expecting him to answer like that. So nonchalantly, as if this were absolutely true and we were just another normal family where you didn’t die from cancer. “Wow! 3 big brothers! Your little sister is one lucky girl!” said the nurse with a big grin on his face. Liam then goes, “I know, ” as he shot me a big grin from across the room. I had been watching his face this entire time and gave him a big smile and a wink. He winked right back at me. Winking was something you used to do to me all the time. I remember how you mastered it while we were in New York and you were so proud to show it off whenever you could. This winking moment with Liam totally made my day. It reminded me so much of you. You were the best little winker. I swear we have been smiling ever since. I don’t know if this is right or wrong. All I know is it felt like a really beautiful moment that I wasn’t going to let pass me by. Today, I did not feel like swooping in and explaining our real truth while my voice quivered and tears ran down my cheeks. Today, I felt like smiling right back at your sweet brother and going along with our perfect little happy family story that at one time, was really ours.

Liam ended up not needing stitches. They were able to clean it out, gauze it up, and bandaged it up really well. It looks like a really good war wound. He was most concerned that he was going to have to sit out at his first baseball game that night. I told him we would see how he was feeling, but it might be a good idea to rest his arm. That’s what ended up happening. Your brothers had their first baseball game last night. I went and sat and watched. Our dear Kassie came with me. Your brothers were so excited that she was coming to watch. It was a great game and they ended up winning. I always find myself missing you during these times so much. I know your brothers do, too.

I had a Poppy check up yesterday. Everything looks good with her or according to Dr. Schwartz, “She looks perfect!” I said I knew, that all of my kids always looked perfect. It’s the after part does my new baby have cancer I’m worried about. We talked a bit about newborn screening. We talked a bit about the date which I would prefer for Poppy to make her entrance into the world. She knows how nervous I am and has been so good with me about doing whatever it is I need done to calm me down. She asked me if I would ever do this again… the have another baby part. I told her I didn’t think so, that mentally it has been really hard for me. Let’s just get Poppy here safe and sound. I can hardly wrap my brain around any of this, let alone thinking about another baby. Yikes. That seems like a lot. Dr. Schwartz told me she is measuring a week ahead of schedule in her height, but not in her weight which is a good thing. I’m sure she is going to be so tall and have those long legs of your daddy’s. We are slowly getting things ready around here. All of this still doesn’t really feel real to me. I know it’s going to take her actually having her here, for me to fully grasp all of this.

Alright little man. I need to run. I miss you. I love you. I hope you are safe.

xoxo

34 Comments
by rockstarronan on March 20, 2013  •  Permalink
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Posted by rockstarronan on March 20, 2013

http://rockstarronan.com/2013/03/20/the-day-we-pretended-like-you-were-alive/

A date where no pants are required

 

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Ronan. Another week done. Another week closer to your baby sisters arrival. A lot happened this week for nothing happening at all. I’ve spent most of the week doing I don’t even know what. Taking care of your brothers has kept me pretty busy. I feel like I’ve poured everything I have into them just so they know how very loved they are. There is a new baby coming. I am trying to be fully aware of everything they may be feeling with this. How does a 9-year-old process the death of their little brother and soon after that, the birth of their little sister? I have no freaking idea. So all I am doing is talking with them as openly as I can while pouring every single ounce of love and affection I have to give, into them. Liam finally got his new glasses and has been wearing them around the house and when he is out and about with us. He looks so handsome in them. He won’t wear them to school yet and I’m not pushing that on him. I’m just trying to let him get used to them first. I wish you were here to see him in them and how proud he looked when he put them on and looked in the mirror at himself. The first time he put them on in the car he goes, “Wow! I can see perfectly!” It made me laugh and broke my heart all at the same time. My sweet gentle giant. He slept with your daddy last night and I curled up in Quinn’s bed with him. Quinn must have told me 10 times how much he loves me. I snuggled up with him as we fell asleep. I always picture how it would be if you were here. I know you wouldn’t be sleeping in your bed but you would be snuggling up with your brothers instead. You loved being with them so much.

I saw Dr. Jo today for some therapy which included the chocolate cake she had waiting for me when I arrived. BEST.THERAPIST.EVER. We hashed out the weeks events. We talked about this Poppy girl and her birth. I told her I didn’t think I could make a specific birth plan for her because as with everything I do, winging it seems to be the best and works for me. I know she will be there and that is good enough for me. We have talked about having your Urn in the room with me. My only hesitation with that is that somebody might break your urn and ashes will go flying everywhere. But I think having your urn in the room with me as something to focus on might be good for me. We will see. I feel like I have been crying a lot. Crying when I’ve been hiking. Crying in bed. Crying when I’m driving. Crying over every song that comes on the freaking radio. My tears seem endless lately. It is just because I miss you so much. I just miss my best friend. I just miss my spicy monkey. I just want you back in the worst way possible. Dr. Jo asked me today when I thought I would be ready to forgive myself. I told her I didn’t know. That maybe Poppy would tell me when it is time in a secret way and only I will know what it means. Maybe you will let her know when it is o.k. for me to forgive myself for all the things I hate myself for that I know are truly not my fault. I think your sister is going to bring so much light into our world that I so very badly need. I think she will be able to hold my hand through this darkness in a way that nobody else can. I cannot believe she is almost here. I am so glad because I truly do not think I can wait much longer for her. I know I will be able to breathe much easier once she arrives. Both literally and figuratively.

It’s kind of been breakdown city over here this past week. It’s been one of those weeks where I feel like I have the weight of the world on my shoulders. I walk around every single second of every single day knowing that you, the love of my life, died. I never for a second forget that. I constantly feel like I am just here, doing my best, but blindly stumbling through this life without you. I never forget that I don’t have your hand to hold, your little lips to kiss, your messes to clean up, your hair to wash, you to dress or tuck in at night. Some days, I don’t know how I live without being able to do all of those things with you or for you. What I wouldn’t give to be cleaning up your messes or wiping up your puke from the flu. Even when you were here, doing those things, it was never an annoyance to me. I never got mad or upset or complained about the lack of sleep or things I was “missing out” on because I was just so thankful to have you. Even before you were sick, I knew what a gift you were. I don’t understand how you are now sitting on top of my dresser in a fucking urn. I still don’t understand how this all happened. I promise I am doing my best, Ronan but it feels so hard at times. I still know you miss me as much as I miss you. I still know we were never meant to be apart. I will forever think that this is so wrong and so beyond fucked up.

Today, Dr. Jo asked me if Inferno Fuckwad Bob was still around. Meaning my nickname for my grief. I told her yes, but I didn’t hate him as much as I used to. She told me she knew that would happen as it’s part of this shift. How her grief has become one of her best friends. I nodded my head and told her that made sense as our grief is never going anywhere. She goes “That’s right. So we may as well invite him in for a cup of tea.” I understand now. I can’t spend my whole life angry and fighting with my grief. I live with my grief 24 hours a day, so I’d better learn how to make the best of it. Your daddy went to the Suns game tonight. Your brothers are at a birthday party. If you were here, we’d be off doing something fun. Instead I sit in our house and cry for you, alone, the way I like it. Sometimes I have to take a break from the outside world. It’s still hard for me to be among the normal, happy people of the world. I’d rather sit here with my best friend, Inferno Fuckwad Bob instead. At least I don’t have to wear pants for our date.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

 

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by rockstarronan on March 1, 2013  •  Permalink
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Posted by rockstarronan on March 1, 2013

http://rockstarronan.com/2013/03/01/a-date-where-no-pants-are-required/

I have a chronic illness and it’s called sadness

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I had big plans today. HUGE plans. I had decided on them last night while I was in my bed, crying. I thought to myself, “Tomorrow I’m going to do nothing but stay in bed all day long.” I got up this morning, hopped in the shower and just as I was getting dressed for my “big day,” I got a text message from Stacy. It simply said, “Can you meet for breakfast?” I didn’t even hesitate as I texted her back, “Yes,” and plans were made. A year ago, I would have told Stacy in no way shape or form, could I possibly meet her for breakfast. That was the state of mind I was in last year. Things are different now.

I met up with Stacy and as soon as she sat down she said, “Fernanda is meeting us, too.” “Great!” I said. Even though she just had surgery, she still was popping in for our little breakfast which I was surprised by, but shouldn’t have been since her nickname should be freaking Superwoman. I sat and caught up with my friends and our breakfast ended up turning into a two-hour meal/discussion/sob fest. I listened as Stacy and Fernanda talked to me about some things they know I am struggling with. Mostly about the last week or so of your life. They told me they know how I am regretting not having you die in our home and I listened as they both explained to me why it was that we were encouraged to take you to the Ryan House. I hadn’t really ever heard this from them before. They talked about how scared they were that you were going to die this awful, painful death by basically drowning on your own blood. How for many kids that die of Neuroblastoma, this is what happens. It is usually a very painful and awful death. They talked about how they didn’t want your blood, all over our house. I listened to them, understood and now I feel like I can let this little piece of my guilt go. I do not blame anybody for pushing us to take you there. I know my friends only had our best intentions at heart as they always do. We all sat and cried talking about this. I said something about I only have the guilt because you begged me to go home and I feel like I didn’t answer your one little dying wish. Nobody knew you were going to die so peacefully the way you did. Nobody knew you were just going to fall asleep. I looked up at the girls and one of them, I can’t remember who goes, “But Maya, don’t you think Ronan’s home was wherever you were?” I nodded my head in response. We talked about some more things as we continued to sit and cry at the table.

I told them about the chapter for this book that I am supposed to be working on. I told them about what it is I was thinking about writing about. I watched as the color drained from Stacy’s face. “You can’t write about that right now. You are going to give birth soon. You cannot write about that.” Fernanda’s eyes welled up with tears. “You need to listen to your gut, Maya, but do you really want to write about that, now?” I told them I was having a hard time working up the courage writing about this part of my life, but it was the only thing my mind kept going back to. I listened to them both and their advice. I left our breakfast still unsure about taking on this chapter but I could not think of anything else that I could connect with to write about. I ran a couple of errands after breakfast and cried almost the entire time in the car. I came home and made a decision to head up our mountain to go hiking today. I can’t take another day of not doing a thing, exercise wise. I put on my clothes, threw on your little backpack and off I went.

I didn’t wear my headphones or blast my music while I hiked. I listened to my head instead. I listened to you. I took it slow up the mountain to keep your Poppy sister safe. I felt my head become less foggy. It was as I was coming down the mountain that I decided what I am writing my chapter about. It suddenly came to me so clearly just the way things always do when I am outside, exercising, and listening to myself and you. It felt so good to be free and clear with my thoughts flowing non-stop. I’ve said this from day one; nothing good will ever come from me hiding in my bed. I cannot change the world this way and for sad as I am and for as much as I want to hide, I can’t. Because if I hide then I die and I really don’t want to die anymore.

I said something to your Sparkly yesterday that has been bugging me to pieces. I told him I was working on being less sad. Saying that left a bad taste in my mouth and I have been mad at myself ever since. I texted him today as I was going up the mountain and told him that I had decided that me saying I was trying to be less sad, was bullshit. That my sadness is like a chronic illness. It’s something I’ll always have and it will always be a part of me. I have to accept it, stop trying to change it, and learn to live with it. I will never be able to get rid of my sadness but I can learn to manage it. Managing it for me will come in many different forms and I am slowly figuring out the “medication” I need to treat my sadness. No, not real medication. My medication. The things that work for me and help me through this life. Things like exercising, nature, writing, helping others, surrounding myself with the kind of people who build me up, not beat me down, and trying to live a life you would be proud of. That’s my prescription. It may not be prescribed by a real doctor, it may not work for everybody, but it works for me and that’s what I’m sticking to.

I’m tired from today and the hiking wore me out, but it made me feel good as well. I’ve missed our little mountain so much. I see Dr. Schwartz tomorrow so she can check up on this baby sister of yours. Please keep her safe and sound for me, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams my spicy little monkey.

xoxo

 

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by rockstarronan on February 26, 2013  •  Permalink
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Posted by rockstarronan on February 26, 2013

http://rockstarronan.com/2013/02/26/i-have-a-chronic-illness-and-its-called-sadness/

This explains why I will never support the American Cancer Society. They do nothing for our kids except use them. Making money off of our kids for your huge salaries!?!? NOT COOL!

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http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

7 Comments
by rockstarronan on February 26, 2013  •  Permalink
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Posted by rockstarronan on February 26, 2013

http://rockstarronan.com/2013/02/26/this-explains-why-i-will-never-support-the-american-cancer-society-they-do-nothing-for-our-kids-except-use-them-making-money-off-of-our-kids-for-your-huge-salaries-not-cool/

I’m sad, I’m sad, I’m sad.

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Ronan. I’m in route back to Phoenix on your 21 months since you left this earth. I’ve been having flashbacks of the end of your days, off and on today. Mostly it is still so painful that I find myself trying to block out the memories of that horrific time from flooding my mind. I’ve been telling myself all day things like your death, isn’t really real. I’ve been telling myself all day this is somebody’s else’s life and not my own. Sometimes I pretend like I am watching a movie or reading a book of a stranger who is living the life that I am living. Avoiding my reality once in a while helps me get through the days that I just can’t take living this life without you anymore. Eventually, reality always comes back and smacks me in the face though. Tonight a big dose of reality is waiting for me as I step off this plane. I know what I am coming home to. Your daddy and brothers will be waiting for me so excited at the airport. I know the tears that will fill my eyes that I will have to fight back. Of course I am happy to see them but it’s you I want to see the most and you are never there, waiting for me with the 3 of them like you should be. I will always look for you though.

New York was a good trip. A productive trip. I met with quite a few people and will have some decisions to make. I met with one editor from a certain publishing house, more than once. Once in a formal setting and once again, outside of her office. I felt a connection with her that I often don’t feel after just meeting someone for the first time. I know what part of our connection is. She has a Ronan. Plain and simple. She has a son that she is absolutely insanely in love with and she completely gets the bond that I have with you. We sat outside of her office and I told her some things that I don’t share with just anyone. We talked a lot about you, about her son and all the things you are making happen in this world. She knows that you are the force behind everything that comes my way. She talked about my natural talent as I writer. How some people try so hard to become a writer and they just don’t have the natural ability that I have. She told me that she knows that this is a gift from you. It’s one of the things are you driving me to do in this life. She told me I could have chosen to do anything after losing you, but this chose me and it’s what I will do for the rest of my life. “You are a writer, plain and simple. This is what you were meant to do and will do for the rest of your life.” Coming from her, I was beyond flattered. She’s a pretty big deal in the literary world and is a writer herself. Hearing those words from her meant a lot to me. I took everything she said to heart and appreciated her willingness to be so open and honest with me. She has given me a lot to think about. I love people like that. The one’s in life that make you think about things from every different angle and don’t want you just to take the easy way out.
With the little free time that I had in New York, I spent it with Rachel. Our Rachel that feels like a younger sister to me. We walked all over the city. So much so that at one point I told her I felt like my vagina was going to fall out due to the heaviness of carrying Poppy. Sorry if that was TMI, but if you’ve ever carried a baby, you know what I am talking about. I took her to your favorite pizza spot, Deliza’s, which is right by the Ronald McDonald House. I knew I wanted to go there during this trip but I imagined going all alone and crying into my favorite soup. Instead, I grabbed Rachel and took her with me. I was so glad I didn’t have to sit there alone. I ate your favorite pizza and soup. I wish I could tell you it tasted as amazing as I remembered it with you, but of course it didn’t. Nothing in the world will ever taste as good, smell as good, or feel as good as it did when you were here with me.
I’m not going to lie. I’ve noticed myself starting to have a really hard lately. As in really hard. Really hard in the way that I felt not long after losing you. I remember the 6 month mark being a really hard time for me. I feel like I am back there again. I feel disconnected from everything and everyone. I feel myself slipping into my alone place, not wanting to connect with anyone. I’ve noticed my heart racing a lot like I am having panic attacks again. I cannot wrap my head around the fact that you are dead and the world is just going on when mine seems to be standing still. The world seems so noisy and not in a good way. It seems to be filled with all the wrong things, the wrong people hurting others, the wrong everything. Everything seems to be suffocating me. I’m sure my feeling this way is due to a combination of things. I am about to have this baby girl and also your 2 years since you died is right around the corner. I find myself obsessing about you and why you are not here. I find myself obsessing about your safety, your happiness, your sadness and who is taking care of you when it should be clearly be me. I am angry and sad in a way that I haven’t been in a while and there is nothing that can make this pain go away or better. I day dream of leaving this fucking life behind because sometimes my sadness is just too heavy and too much. I am trying to get excited about Poppy, but all I can focus on is not having you physically here to be a part of her life. I know you will be a part of her, Ronan, but not in the way I want or you want. It’s not the same as having you here.
I sat today and tried to be productive. Mostly my day was filled with my tears that seemed never-ending. I went to see your Sparkly for a bit. I hate seeing him on days like today where I am so sad that I can tell it hurts him.
“I don’t know what’s going on. I’m so sad and I can’t stop crying. I just miss him so much.”
  I could see the way his eyes were starting to form tears as he said to me, “You just spent the past week talking all about Ronan in New York. Thinking all about Ronan in New York, not that you’re not always thinking about him but I know everything in New York was very intense for you. You aren’t sleeping at all. You have a baby on the way. You have to be mentally and physically exhausted, sweetheart. I don’t know why you continue to do things like this. The going to New York thing all alone. It’s too much, especially at this point in your life.”
Me: “But I always do these things alone. That’s how I like it.”
Him: “I know you insist on doing all these things alone, but it’s not the way it should be. You are back now so please just take these next few days to just stop. Slow down. You’re doing too much.”
I just let my eyes fall to the floor. I wanted to say I don’t know how to stop. How stopping will make me want to run up my mountain 8 months pregnant and not come back down. But I just promised him I would try instead.
We sat for a while longer and caught up. As I was walking off your Mr. Sparkly Eyes said, “Hey, please just give me a smile. Even if you don’t mean it or don’t feel like it. Come on, just try for me.”
Not even him begging for a smile could make one appear today. I was not about to put on a pretend one for him either. So I just turned around, walked back and wrapped my arms around him instead. I stood that way for a minute, while the tears fell down my face. I wiped my tears away and let him tell me it was going to be alright. I nodded my head and walked off repeating the words over and over again, “It’s going to be alright, it’s going to be alright.”
I don’t know if things will ever be alright, Ronan. All I know is this is the way it is.
I miss you so much. I love you so much. I will forever be sorry, sad, and brokenhearted. I hope you are safe. G’nite baby doll.
xoxo
59 Comments
by rockstarronan on February 11, 2013  •  Permalink
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Posted by rockstarronan on February 11, 2013

http://rockstarronan.com/2013/02/11/im-sad-im-sad-im-sad/

We aren’t stopping with signatures. We are starting a movement. Are you in?!?!

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Thank you, Cathy. Please go and enjoy Disneyland and your kids now. We are all moved by your story, heart, and braveness. You are an inspiration to us ALL.

 

 

We are consistently amazed by how much support we get from adults who have fought cancer, and say, “kids should never have to go through this.”  We want to show the White House that raising awareness for kids’ cancer isn’t just important to the parents’ of our littlest cancer fighters – it is important to ALL OF US.

 

How you can help:

 

1.  Adult Survivors / All Cancer fighters take a picture of yourself holding a sign (template and examples below).

 

2.  You can hand-write the sign on poster board or have it printed. Make sure it’s large enough to read.

 

3.  Follow the template and keep it simple! We want the message to be loud, strong & clear.

 

4.  We will post the pictures on social media, and make a slide show from the pictures. By sending us your picture, you are consenting to the dissemination of your photo.

 

5.  Send the photos to Rebecca@RonanThompson.org by MONDAY, January 28, midnight EST. (We wish we had more time, but the petition window ends on February 6.)

 

 

THANK YOU!

The Ronan Thompson Foundation

 

TEMPLATE:

 

I’m [NAME]. I am a [type] cancer survivor. But I’m asking you to shine a light on pediatric cancer, the #1 disease killer of our kids. Mr. President, light the White House GOLD this September.

 

Please sign the petition:

http://wh.gov/PkGX

9 Comments
by rockstarronan on January 26, 2013  •  Permalink
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Posted by rockstarronan on January 26, 2013

http://rockstarronan.com/2013/01/26/we-arent-stopping-with-signatures-we-are-starting-a-movement-are-you-in/

Our FIRST Photo! Keep em’ coming! Thanks, Christine!

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19 Comments
by rockstarronan on January 25, 2013  •  Permalink
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Posted by rockstarronan on January 25, 2013

http://rockstarronan.com/2013/01/25/our-first-photo-keep-em-coming-thanks-christine/

A Gold White House. I Will Not Stop Begging. Or Crying.

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Ronan. I had no idea getting 25k signatures on our petition was going to be so hard. I mean, it shouldn’t be, right? It seriously is something that takes 60 seconds. I have been working non-stop on this and I know a ton of other people have as well. Again, thank you to all who have signed and who are harassing everyone they know about it. This has to work. It is time The White House steps up and starts to recognize Childhood Cancer. It should have happened a long time ago. I’m still blown away that the awareness has slipped through the cracks. Did you know that George Bush Senior, had a daughter that died from leukemia? I believe she was almost 4, just like you Ronan, when she died. Heartbreaking, right? Heartbreaking, but you would think from that, something fucking amazing would have been done, that would have put childhood cancer on the map where it does not get ignored. We had not one, but two President Bushes that could have done something huge, but as far as I can tell, not much was done. So here we sit now, begging for a petition to get the signatures it needs in hopes that The White House will say a BIG, FAT, YES to lighting that White House up GOLD for the month of September. This is not something we should have to beg for. I begged for the life of you, Ronan. Begging for signatures just seems silly, but as I said before, I will do whatever it takes.

I really hope President Obama, takes a stand on this. I really hope the First Lady decides to get involved because trust me, kids are not dying left and right due to childhood obesity. Do kids with childhood obesity have to go through harsh chemo treatments meant for adults? No, they do not. Kids that are diagnosed with cancer get to not only go through awful chemo, but these lovely things as well… Let’s add scary radiation to the list where they are left in a tube, all alone, not understanding a thing. Also, extreme fatigue where they no longer get to be a child. Constant flu-like symptoms such as runny noses, chills, and coughs. Pain that they cannot fix such as headaches, muscle pain, stomach pains, or even temporary nerve damage. Pokes, prods, riding an IV pole around a hospital instead of a bicycle. Mouth, gum and throat sores. Nausea, vomiting, loss of appetite, constipation, diarrhea, bloody noses that cannot be controlled due their platelets being wiped out. Skin changes such as blisters, peeling, and swelling. Feeding tubes.  Weight loss or gain. Lovely hair loss which leaves them to feel weird and different from everyone else around them. Kidney and bladder problems. Anemia, which destroys all types of healthy blood cells and leaves the child often pale, speeds up their heartbeat, and shortness of breath. Blood Clotting problems where everything bleeds non-stop including a small scratch or bloody gums when they brush their teeth. Neutropenia, which leaves the child with an immune system so shot, that they often cannot fight off infections. Let’s not forget all the surgeries that come into play. Stem cell transplants, bone marrow transplants, bone marrow aspirations, the awful port changes, nightly shots to boost their immune system. The endless amount tears, worries, and pain. And those are just the physical symptoms. Don’t forget all the psychological damage that is done as well. Not to mention being torn away from their siblings, parents, friends, and the extreme stress it adds to the family who have no choice but to put on a strong face when all they really want to do is crumble up and die.

Sometimes, cancer treatments can cause permanent changes to a child’s growing body. These long-term side effects can include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs. Kids may experience issues such as delayed cognitive development, growth problems, and infertility. In some cases, those who’ve received certain types of chemotherapy are at higher risk of developing a second type of cancer later in life. Let’s not forget that every single day, 7 kids just up and die from childhood cancer and every single day 46 kids will be diagnosed. Let’s not forget, that this could happen to anyone and childhood cancer is the NUMBER ONE DISEASE KILLER IN KIDS. But I totally understand why we have taken such a stance on childhood obesity.

So, here I am, begging for signatures for a petition that I don’t even know The White House will say yes to. Here I sit, with tears streaming down my face not ONLY for the loss of you, but of so many others as well. All I am asking for is for childhood cancer to be as recognized as all the other cancers out there. All I am asking for is for the color GOLD to be as recognized as the color PINK. Just make it equal. Why isn’t it already? These are kids for crying out loud! They should not be thrown into a life of being “fighters,” because nobody is fighting for them.

 NATIONAL CHILDHOOD CANCER AWARENESS MONTH, 2012

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA
A PROCLAMATION
Every year, thousands of children across America are diagnosed with cancer    an often life threatening illness that remains the leading cause of death by disease for children under the age of 15.  The causes of pediatric cancer are still largely unknown, and though new discoveries are resulting in new treatments, this heartbreaking disease continues to scar families and communities in ways that may never fully heal.  This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness.
While much remains to be done, our Nation has come far in the fight to understand, treat, and control childhood cancer.  Thanks to ongoing advances in research and treatment, the 5 year survival rate for all childhood cancers has climbed from less than 50 percent to 80 percent over the past several decades.  Researchers around the world continue to pioneer new therapies and explore the root causes of the disease, driving progress that could reveal cures or improved outcomes for patients.  But despite the gains we have made, help still does not come soon enough for many of our sons and daughters, and too many families suffer pain and devastating loss.
My Administration will continue to support families battling pediatric cancer and work to ease the burdens they face.  Under the Affordable Care Act, insurance companies can no longer deny health coverage to children because of pre existing conditions, including cancer, nor can they drop coverage because a child is diagnosed with cancer.  The law also bans insurers from placing a lifetime dollar limit on the amount of coverage they provide, giving families peace of mind that their coverage will be there when they need it most.  And as we work to ensure all Americans have access to affordable health care, my Administration will continue to invest in the cutting edge cancer research that paves the way for tomorrow’s breakthroughs.
This month, we pay tribute to the families, friends, professionals, and communities who lend their strength to children fighting pediatric cancer.  May their courage and commitment continue to move us toward new cures, healthier outcomes, and a brighter future for America’s youth.
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 2012 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 thirty first day of August, in the year of our Lord two thousand twelve, and of the Independence of the United States of America the two hundred and thirty-seventh.
BARACK OBAMA

Please, President Barack Obama, stay true to your words. Please fight this fight with us. A change cannot happen without you. Please do so much more than just some words on a piece of paper.

Ronan. I love you. I miss you with every aching bone in my body. I am so sorry this is not fixed already. I am so sorry you had to die from something that is so awful and continues to be ignored. I promise to fix this for you. I promise to never stop fighting for you. I love you with everything that I am. Forever.

xoxo

I won’t stop posting this petition until it gets the 25k signatures that it needs. This is our only chance. If we don’t get this passed this time, the required signatures goes up to 100k. This is not just another thing of spam that comes your way. Signing this can help this cause. Please. I will do anything. I will shave my fucking head. I will eat worms. I will stand on a street corner and whore myself out, but I don’t think my husband would like that very much. I will jump out of a plane but for those of you that know me, you know I would do that for fun, anyway. Oh, and plane jumping might be off-limits for now due to the safety of Poppy a.k.a. Little PopStar.

Please, just sign and share. Go to your local news stations. Beg with no shame, just like the way I am. Or do the complete opposite. Read this, do nothing, and go about your self-absorbed ways. I have enough tears, that I can spare them to cry for you as well.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

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I know this picture is hard to look at. But imagine how it felt for him and for us, as his parents. He was 3 years old. The fact that nothing has changed for childhood cancer is unacceptable. The fact that he had to go through all of this as so many others are and will, is something I will not stand for. Please do not just go about your day. Please help us do something. I am not going to stop fighting for my child, ever. He is worth every painful thing I feel, think or see. He is worth all of this pain and suffering. It reminds me of why I cannot give up. I will not curl up and die or go on with my life ever. He is my life.

120 Comments
by rockstarronan on January 24, 2013  •  Permalink
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Posted by rockstarronan on January 24, 2013

http://rockstarronan.com/2013/01/24/a-gold-white-house-i-will-not-stop-begging-or-crying/

Dear AZ Peeps,

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I’ll be on ABC 15 at 10:00 tonight talking about this petition, Poppy, and all things Ro!  Thanks Channel 15 for being so awesome and wanting to help us get the signatures we need!!!!

Tune in tonight if you can! For those not in AZ, I will provide a link when it is available. Thank you!

xoxo

 

PLEASE CONTINUE TO SIGN AND SHARE. THE WOODDAWG TOLD ME HE DOES NOT THINK WE CAN GET THIS DONE. IT’S ON LIKE DONKEY KONG!

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

24 Comments
by rockstarronan on January 23, 2013  •  Permalink
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Posted by rockstarronan on January 23, 2013

http://rockstarronan.com/2013/01/23/dear-az-peeps/

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