9 months. I’m so sorry.




Ro baby. I started this last night. I am so tired that I don’t know that I’ll be able to say much more. Seems like not many words are needed tonight. I can’t believe it’s been 9 months. It feels like 9 years. I’m so sorry. I miss you so much.



Ronan. Bloody fucking fucking fuck. Guess what? This time, 9 months ago I was curled up to you as you were getting ready to take your last breath. How is that even possible? I will never understand this. There will never be a good enough reason for this. I don’t care how much Robeauty comes from this story, Ro. It will never be enough to make up for the fact that you are not here. To make up for the fact that we are not together. My soul screams for you every second of the day. I hear yours screaming for mine as well. I hear the screaming and there is nothing I can do to silence it. I know the screaming will never stop until we are together again. I am learning that I am going to have to live with this screaming, for the rest of my life

What the fuckery happened today? A lot. This week has kicked my ass. I went back for the last day of the TGen conference. I sat in and listened. I scanned the room at all the faces that had become familiar to me from the week. Some of them looked sparkly. Some of them looked empty and vacant. I looked down at my agenda from the week of the key speakers. I had put stars by the people who stood out to me the most. You never know when that little star in front of a person’s name, will come in handy. The one’s that felt to me like they were there for more than just science. I missed you a lot today. I sent your Mr. Sparkly Eyes a text in the midst of my frustration and told him about my plan to hijack the podium. He told me to do it. That the room could use the dose of reality. As always, he was so right. By the time lunch came around, I was so burnt out. I had myself convinced that I taken on too much during the week and that I could skip out of the conference, early. I listened as the 2 little voices in my head, fought back and fourth. One told me to go. That I had gotten everything out of the 3 day conference that I needed to. The other voice, which was very quiet told me to stay. To finish out the day even though I felt so mentally and emotionally beaten. I stayed. And I now know the reason why.

As I was sitting at lunch, talking to someone from TGen a man came and knelt down in between us. I didn’t have a clue to who he was and I was sure he was there to pick the brain of Terry, whom I was sitting next to. He just looked at us and said so sorry but he needed to interrupt. He said, “Maya, I saw you and just had to come over. I’m Max’s dad. I’m so sorry about Ronan.” ┬áMy jaw dropped. “Oh my goodness. You’re Max’s dad. From Max’s Ring of Fire. You are going to make me start to bawl.” He said he didn’t want to do that and we chatted for a few minutes before he excused himself so I could finish my talk with Terry. After lunch, I hijacked Max’s dad and took him over to where I was sitting, so he could sit next to me. I don’t follow a lot of Neuroblastoma stories, but Max’s is one that has always stood out to me and I have followed mainly because he reminds me a lot of you. It was apparent to me, in that moment, that there was a very big reason as to why I did not leave that conference early today. It was because of you and Max. You must have been working together, very hard today. Or playing very hard, I should say:) I exchanged info with Max’s dad. I have no doubt I will be seeing him again soon. I look forward to exchanging many MaxRo stories with him. He made my entire day today.

After the conference I had time to come home and see your brothers for about .2 seconds before they rushed off to basketball practice. I then had to turn around and get ready for a dinner. A dinner that I am keeping quiet about, for now. It was a 4 hour dinner where I feel like big things are going to start to happen but I don’t want to say too much yet as I don’t want to jinx anything. Let’s just say we all have big dreams for this lovely state of AZ. We all feel like we can make big things happen in the Neuroblastoma world, together. A small army is being formed, for very personal reasons. It’s time for a very big change. I have no doubt that big things have the potential of happening with the vision and minds of the people that sat in on our dinner tonight. It felt like we were all sitting around playing a real life game of chess. Everything has to be thought out, strategically planned, and moved when the time is right. The time is almost right….. it’s just a matter of getting all the pieces into place.