ROCKSTAR RONAN

Ronan. What a day. How I miss the simple days of chasing you around. Laughing as you would pick all the flowers around our neighborhood from other people’s yards, thinking you were so naughty for doing so. I let you think you were being naughty, just to make you giggle and to let you feel like you were breaking the rules. Gosh, how I loved to embrace your little spicy rebellious ways. You weren’t naughty. You were innocent. You were a child. You were mine. You were the best thing that’s ever been mine. I honestly still cannot believe you are gone and that I don’t get to chase you around anymore. There is not a second of the day, that I do not miss you. Not one second.

I sat at the TGen conference all day again today. I don’t know what in the world happened, but I spent most of the day wiping tears away from my eyes. In a room full of scientists, doctors, researchers….. all there for pediatric cancer. I was only there, for you. The biggest reason of all. I did my best to soak up everything that was being said. Neuroblastoma was only touched on a few times but I found that when it was being talked about in charts, graphs, statistics…. was when it was all I could do not to crawl under the table and curl up in a ball. I didn’t want everyone in that room to see the data that was being presented in front of their faces in a scientific form. I know it’s important to them Ronan and I am so thankful for all the hard work that’s going into this disease, but it’s not enough. I wanted the data to show your face instead. I mean, I think your big blue eyes are the most compelling piece of evidence ever of why this disease deserves to have a better outcome. It was actually all I could do, not to run up to the podium and hijack the speakers talk. I imagined it. A dozen times. I imagined myself, slapping your picture up on the screen. I wouldn’t have needed to say much as your eyes say it all. I think my eyes do too. But if I would have said something, it would have been something like this:

I’m not a doctor. I’m not a scientist. I’m not a researcher. I’m not even a nurse.

I’m a mom. I’m a mom whose heart is broken into a million pieces because this little boy, was mine. But he was stolen from me by childhood cancer. Please work harder because there is a reason you are here. Please make this about more than just science. Please let him be one of the reasons that you will work harder. Please fix this, so someday another mother like me, does not have to stand before you, wearing her child’s ashes around her neck. He deserved better. He deserved to be mine, for much longer than almost 4 years. He should have been mine, for the rest of MY life. I should have been his, for much more than almost 4 years. Almost 4 years, will never be enough.

I know they are not the most compelling words, but today they were the only thing I could muster up in my over active imagination to say. My brain/emotions are fried. As I said before, I don’t think I need any words. Your picture is enough. How could anyone look at your face, and not be broken-hearted? The combination of your beauty and my sadness is more than enough, baby doll. The ultimate sacrifice.

Candice from TGen was kind enough to make sure I got to meet Dr. Sholler today. I actually got nervous as I went to not shake her hand, but to give her a hug instead. It’s so funny to me how the medical community are just not big huggers. It almost seems to make them uncomfortable. It actually makes me laugh. It seems to completely throw them all off. I think I need to spread the RoLove around. I think it’s a big part of the missing piece of the puzzle of this sometimes detached from emotion reality that these doctors live in. Dr. Sholler was not expecting it, but she smiled and seemed o.k. with this crazy girl hugging her and trying to find the words to tell her thank you. I think I stumbled on a few things. I remember telling her about you. Showing her your picture. Handing her your Rocard. I called her a maverick and an outside of the box thinker….. I don’t think she knew quite what to make of me. I was hoping she wasn’t thinking, “Who is this crazed stalker with purple hair??!” because that’s what I totally felt like. I am so glad I finally got to meet her. She told me she was sorry about you. You know that speaks volumes in my book. Simple words that go such a long way. I look forward to hearing her speak tomorrow. I look forward to watching what she does in regards to Neuroblastoma. She’s very eager which I like. Eager and passion are both things I feel from her. So, let’s keep watching and learning more Ronan. She has our attention. She’s had it for a while. Oh, and I saw Dr. Eshun again today. He tried once again to shake my hand and laughed as I grabbed him for a hug.

Today, while I sat in the room full of absolute brilliance everywhere, I noticed there were 2 things missing. Well, 3 actually but I’m only going to talk about 2. Dr. Mosse from Chop. I emailed her and told her I was there and that I wish had been there, speaking. She emailed me back to tell me that some of her colleagues were there, and she was sorry she could not attend. She also told me she hoped I was o.k. She made me smile so for that moment in time, I was o.k. I sent Dr. Jo a text to tell her that this conference desperately needed her there. Fo shizzle. There is a missing layer to all of this and it is only something that Dr. Badass JoRo can deliver. It has nothing to do with science. It’s Humanity. Depth. Compassion. Pain. Beauty. Rawness. Realness. That woman has such a way with words, that she could have no doubt brought every person in that room, to their knees begging to know her secret. Her secret has nothing to do with her fancy degree. Her secret is not something you can get at med school. Her secret is beyond this world and she is the only one that can posses it. She is doing amazing things with it. Romazing. I’m just sorry it fucking has to be this way. It shouldn’t be, because of this beyond fucked up fuckery that she is surviving. Everyday, she is surviving Ronan. She is surviving all while making this world a better place. Not many people can say that about themselves. Not many people would want to. Not even her. Trust me. Nothing is worth this pain.

In the middle of my noyoucannotsoblikeafuckingbabyinfrontofallthesepeopletantrum…. I sent your Mr. Sparkly Eyes a text message. I don’t even know what I said but I’m sure I was on one of my usual rants about F U Cancer to him. He simply responded with an, ” I miss him.” I read his words Ronan and FUCK. I felt like I had the wind knocked out of me. It was game over. I know he misses you but for some reason, it hit me really hard today. In a conference room full of people, alligator tears were uncontrollable. I took a minute to get myself under control and just told him, ” I miss him for you too.” That was all. Nothing more needed to be said as those words were enough. Sometimes the simplest words, say it all. I know what needs to be done. I trust in you. I will be your Rovocate for the rest of my life. I will make you both proud. I will never stop fighting for all that was taken away from you. For the love that was ripped from my arms. I promise I won’t give up until our RoLove, changes the world.

O.k. little man. That’s all for tonight. I love you. I’ll be sorry for the rest of my life. I can’t wait for the day that I can see you again. And no. I don’t need to believe in a fucking GOD for this to happen so people need to stop saying that. I believe in you, Ronan and you are more than any GOD could ever be. I miss you. I hope you are safe. Sweet dreams, little man.

xoxo

P.S. Thank you for all the Roideas today. Through my sadness, grief, pain…. the ideas would not stop flowing. Pediatic Cancer is about to get FUCKED!