You were absolutely, my best four years.

Ronan. Yesterday, it was 16 months without you. It seems like 16 years. I meant to write, but I was so wiped out that I could not even form a thought or hold my head up for that matter. Due to this little Poppy growing in my tummy, I have been spending a lot of time with my head in the toilet bowl. So much has happened. I’ll go back to Thursday I suppose. It had been a whole week since I had been keeping the Taylor secret. I was proud of myself for doing such a good job. I was on the phone with one of her people, that has been so kindly guiding me through all of this. I was sitting on our bathroom floor, next to my bathtub where I used to love to bathe you. I said to Taylor’s friend, “I have so many questions, but do you know what the biggest one is? I don’t even know the name of the song. Can you tell it to me?” He paused for a minute. “I can tell it to you, but I’m just going to make you cry more.” “Hit me with it,” I said. “I’m ready.” It was quiet for a few more seconds. “Ronan,” he said. I think I blacked out for a few seconds. I was not prepared for that answer. “What?” I whispered? “She named the song, Ronan?” “She did,” he said to me. Once again, I went into shock. She could have named the song anything. But she didn’t. This was the ultimate tribute to you. I hung up after a few more minutes, the tears pouring down my cheeks still. I emailed my board members and it went a little something like this.

Subject: I know the name of the song…

Ronan.

That’s all I said. The phone calls came next. I picked up for Stacy. She was in the middle of a meeting and had to get up and leave, due to the snot pouring of our her nose. I don’t think we said much at first, we just listened to each other cry. When words were formed, it went a little something like, “I can’t believe she did that. But of course she did that, because it is perfect and pure and heartfelt, just like everything else this girl does. But I still cannot believe she named the song after him. Everyone is going to know his name.” We sat in silence for a few more minutes as we were both crying so hard we couldn’t compose ourselves enough to even talk. I drove to your daddy’s office to sit with him about this. We both were a teary eyed mess. This was Thursday. It was a lot to take in and a lot to wrap my head around. I fell asleep that night so exhausted from all the crying, but I only slept for a few hours. I was woken up by a text message around 3:45 a.m. Katie sent me a text saying, “I think the story has leaked.” Her text message included a picture of an online story with the name of Taylor’s new song, “Ronan.” I jumped out of bed. “Shit!” I didn’t know if this was the way this was supposed to play out. My phone started blowing up with text messages and phone calls. I tried to remain calm. Focus. Deep breaths. It’s Friday. Taylor’s song is on tonight. You have a big day ahead of you. Shower. Get boys up. Make breakfast. Boys off to school like it is just another normal day, not a totally insane is this really happening day. House is quiet. Heather stopped by. Mandy Bee stopped by too. Did I forget to mention it started pouring down rain earlier in the morning? Not just a slight drizzle, but buckets of rain as if the sky had opened up. I went out and danced in the rain for you and blew kisses up to the sky. I know the rain was from you. It always is. The weather peeps on TV were so puzzled by this downpour. I felt like calling them up and saying, “Hello, it’s just my son, Ronan, crying his thousands of tears for me, on this very emotional day. He always does this for me, on the days I need it the most because he knows the rain makes me smile.” I was sitting there, watching the rain, when Fernanda showed up.

I opened the door, flew into her arms, and nuzzled into her neck, the way I used to do with you. I always do this to her. We held each other for a few minutes and both cried. We talked all about the rain and how it is proof that you are right here with us. Always. My keeper of the best rainy days that exist on the days that I need them most. After that, it was operation get Maya the fuck out of the house, because here comes the media. I was swept off like a fugitive to a secret location so we could deal with the storm that was headed our way. And I’m not just talking about the weather. The rest of the day was spent dealing with phone calls, website stuff, emails, all while we watched the rain continue to pour down. I was running off a few hours of sleep, not to mention Poppy had sucked all the life out of me as well, but I just rolled through my exhaustion into the Taylor Swift night. We gathered with some close friends, huddled around some TV’s to watch Taylor’s performance. Everyone was crying, before Taylor even took the stage, to sing. I sat close to your daddy, gripping his hand for dear life. I watched as Taylor came on the screen. I had a moment of panic wash over me. “No, no, no. I’m not ready for this.” I took a deep breath. I looked at your daddy, his eyes were already watering. I think I left my body at this point. I couldn’t even focus on the words that were coming out of Taylor’s mouth. All I could see was the raw emotion, sadness, beauty, and pain that filled her face. She looked like an angel. At this point, I’m pretty sure I had snot dripping down my face and my mascara had completely washed off, leaving black streaks running down my cheeks. The song ended. I was frozen. I looked at Taylor’s eyes on that screen. She gets this in a way that so many others do not. Her eyes burned into my soul and it was if I could feel every ounce of emotion that she was displaying on T.V. and she could feel mine. I looked at your daddy and said, “Was the song good?” I was so removed from myself at this point and distracted by the way Taylor looked, singing our words, that I couldn’t even form an opinion. I shouldn’t even have asked the question because it was obvious from looking around the room that the song was not only good, but it was absolute perfection, in the purest form possible. I somehow made it through the next hour. It was time to go and I got into the car with your daddy and brothers. We drove off to get food as we were all starving. We took my iPhone and put Taylor’s song on in the car, to listen to it once again, as a family. I held your daddy’s hand as I listened to Taylor’s words. I looked out the window. It had started raining again. Of course it had. The rain matched the tears that were once again, pouring down my cheeks, perfectly. Those lyrics. My words. She got them so perfectly right. Every single little detail about your life and your death. The way she portrayed my grieving, broken heart. “Flowers pile up in the worst way, no one knows what to say…” All the little details, meant so much to me. She was the one meant to sing your song. Nobody else, could have made it complete and utter magic while filling it with such raw sadness and beauty. I truly believe you picked her to do this, Ronan. There is a reason she could not forget about you and your big blue eyes, that is beyond just Taylor and myself. I truly believe this is all you and Taylor listening to heart, which has turned this song into what I think, is the best song of her life. I am so moved by her and the vulnerability she displayed while singing this song. That took it to an entirely different level for me.

We all went to dinner, like the perfect little family I know we look like. The perfect little family with the biggest piece of the puzzle missing that the strangers in the restaurant cannot see. I wonder how they do not see the blatant pain on all of our faces that always seem to be there. I always feel like I am walking around with one of my arms chopped off. You know I have a hard time sitting in restaurants now. I try my hardest to tune out the conversations around us. Lots of people complaining about things that I will never complain about again. Lots of laugher fills the room, but it’s not coming from our table. Our table is one of sadness, with moments of smiles here and there, moments of talking about you and what an awesome little basketball player you would have been this year. Tears fall. I wipe them away before your brothers see. Thoughts of Taylor fill my head and the gift of eternal life she has just given to us, fill me with a bittersweet calmness that I’m not used to feeling anymore. That is the gift she has given to us. A way to keep you alive in the hearts of millions, that I would have never been able to reach. She is giving so many, the gift of you and our story, that is so worthy of knowing. The story of true love and how powerful it can be when it comes from such a pure place. How good things can come from the worst thing imaginable happening if one chooses to gather strength from it, instead of letting it destroy them like it can so easily do. I wonder what the people reading this on here, are thinking. The one’s who gave up on me during my darkest hours. The one’s who told me things like this story was like watching a bad car accident, but they couldn’t look away. The one’s that told me I was a train wreck waiting to happen. The one’s that told me they couldn’t wait for the day your daddy came to his senses and up and left me, due to all the awful things they thought I was doing, which was being open and honest about how painful it is to try to get through something like this. The one’s who told me my heart was ugly, black and broken and how it would never heal. The one’s who told me I was not going to do anything with this because I am a selfish person. The one’s who told me they could not longer support you or me, due to the nature of all of this. I wonder if this story, now makes them cry because of how it’s changed shape and form and is turning into something so beautiful right in front of their very eyes. I hope this story has changed their hearts. I hope this story opens their eyes to some very important things, like how just having simple compassion for human beings who are hurting so badly from the worst pain imaginable, can go such a very long way. It’s one of the reasons I am still here and continue to fight this fight. Because of the compassion and love that fills my life in the form of friends, family, strangers, and now Taylor. That Taylor Swift believes in us so much, she wrote a song just for you. To me, that tells me what I am doing is right. That by listening to my heart in this journey, there are no limits to how far this can take us. To the moon and back, right Ro? I have big plans for us. The biggest. Thanks for never letting go of my hand. I love you so much, little man.

I must go. I am beyond beat. I spent most of the weekend lying low for all the beautiful things that I know are going to keep me busy in the weeks to come. I had a date with Liam on Saturday. He is the sweetest. What kind of 9-year-old, knows to open his mama’s car door for her, when she is getting in the driver’s seat after a movie date? The kind of 9-year-old that has a daddy like yours. The best. I missed you so much when he did that for me. It made me so sad to know that is something you will never do. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll

xoxo

Cowboy Boots and Little Big Baby Steps

 

 

Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.

Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.

I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.

Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.

It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.

xoxo

Ronan and a Rockstar

Ronan. Today was one of those days that so many things have happened, that I feel like I’ve lived a week, in a day. I fell asleep earlier, exhausted from everything. I’m up now. Lovely. For the 10 days that Macy was here, I slept like a baby. I slept in a way that I have not slept, since before you were sick. Last night, with no Macy in your bedroom because she had to go back to San Francisco, I tossed and turned all night. I’ve done the same thing tonight. Macy, my natural Ambien is gone and I am back to not sleeping. I talked about this with Dr. Jo today. We chalked it up to being about many things. We think a lot of it is the way Macy takes our sad, empty house and fills it with peace and love. I think I took great comfort in knowing that while she was here, your little room was not empty because Macy was sleeping in it. Now it’s empty again. It’s sad and lonely which in turn leaves me feeling unsettled. So, back to not sleeping I go. I will write to you instead.

This morning I started tossing and turning around 5 a.m. I was groggy from only sleeping for a few hours. My phone beeped with a text message. It was from Dr. Jo around 7 a.m. It said, “Call me ASAP.” Crap. My stomach dropped. Is this something bad? Is she o.k.? My mind immediately goes to the worst place possible which usually involves an awful accident, somebody being seriously ill or dead. I called her back right away.

“Hi Mama!” she said. I said, “What’s wrong? Are you o.k.?” She said she was. She said she was driving down to Phoenix from Sedona but she couldn’t wait until our appointment to talk to me as she had something to tell me. I told her to hold on, so I could get up out of bed. I didn’t want to wake your Daddy. I grabbed your GiGi and went into your room and curled up on your bed. “What’s going on?” Dr. Jo then went on about the dream she had. How she woke up at 2:11 a.m., crying from what she had just experienced because it was that powerful and vivid. It was all about you. She said she saw you. She knew you were dead. How you were so beautiful and had this glow surrounding you. She watched you as you kind of hovered above me but you were nestled in my arms. She said “Hi Ronan!” She asked if she could hold you. You told her yes. She was holding you. Macy was there. You kept telling her, “You have to tell my mom, it’s o.k. I was there with her and Macy. But you have to tell her it’s o.k! Don’t forget. Don’t forget to tell her I’m o.k.” She held you and she said she would tell me. You kept saying those words over and over. She said she went to put you down and you started kicking your little legs telling her you didn’t want to be put down. Dr. Jo said it was one of the most real dreams she’s ever had about a person other than the one she had about her father and the one she had about Cheyanne. I smiled at her dream. I was quiet and then told her the kicking your legs part is so something you would have done. She asked how I felt about her dreaming about you. I told her I was honored that you chose to visit her and that I was so glad that you did. She said she was honored because she never got to know you, but the fact that you let her hold you in her dream, meant so much to her. She kept talking about how beautiful you were, how you had all of your hair. I imagine you looked to her, in her dream the way you looked in real life. With your little pouty lips, tan skin, button nose, that sandy colored hair, and of course, those big blue eyes. Absolute perfection in every way. I am so glad you went to see her last night, Ro. For as much as I don’t know, her dream makes me think that maybe you are o.k. I still don’t know how you can be o.k., without me. But I have to try to trust that you are because I am making myself go crazy with worry, that you are not. I don’t know if that will ever go away but during that time that I listened to Dr. Jo, I felt for a few minutes that it could be possible. I hoped, anyway.

After I got off the phone, I started our day as usual. Got your brothers off to school. Met up with Katie for a quick coffee. Ran to Dr. Jo’s office for a long session. We talked about how last week was. Everything that went on. We went back and forth on the noise that is invading my brain. We made some decisions involving how I would go about handling it. She was proud of me and how I had taken the time to sit with some things instead of acting impulsively on them which is what I would have done in the past. I sat in her office with your blanket draped around my neck as I always do. I often catch myself burying my face into it and smelling it the way you used to. She told me I looked tired. I told her I was so very tired. She offered to fill me up with sugar to get me through the day. I laughed at the 10 Reeces Peanut Butter Cups she had waiting for me on her couch. I peeled myself up, thanked her, and gave her a big hug goodbye. She told me to call her later about some things. I told her I would.

I had a little time before I had to get your brothers. I came home just to get a few things done so your Daddy will not divorce me. Things that I needed to get done like paying bills and putting laundry away. I came home to our quiet house which I hate but I cannot escape at all times. I escape it a lot. I avoid being here, alone, in the middle of the day as much as I can. It is such a sad, quiet house without the little pitter patter of your feet. Without your little voice that used to fill up this entire house with such love. Everything is different in such a bad way. A bad way which includes this reality that will not go away. No matter how many miles I run in a day or how far away I drive. It’s here to stay.

My phone rang from a blocked number today. Normally, I wouldn’t have picked it up, but I was clued in earlier in the day as who it may be on the other end so I picked it up.

“Hello.” I said in my best not 15-year-old voice 😉 (that was for you, Sparkly)

“Hi, is this Maya?”

“This is she.” I replied.

“Hi Maya, it’s Bret Michaels.”

I simply replied, “Hi Bret,” as if I have known this huge Rockstar my entire life. It didn’t truly dawn on me, who I was speaking to. At least not while I was on the phone with him. That changed after I hung up and processed all that was said. It changed for the few minutes that I allowed it to, but then I remembered. Mr. Bret Michaels is indeed a Rockstar. But even more importantly, he is a dad. He is a parent. He gets this because at the end of his crazy filled days, it is the love of his life and his kids that matter most. He knows what really matters most in this world and it is not his name in bright, shiny lights. He gets the bigger picture of things and what is truly important.

He started off by saying how much he and everyone around him, thinks about us. How he has read this entire story. How sorry he was. I thanked him. He kept saying over and over that he wanted to help in any way he could. To please just let him know what he could do, and he would make it happen. He talked about how he gets asked to support a lot of charities, but he really only supports a few as he doesn’t want to confuse people. I know diabetes is close to his heart as he struggles with it and wants to find a cure. He told me that he wants to support this. How he wants to help me change things. We talked about the things he can do. We talked about the connections he has which are HUGE. He just worked with the Trumps on a Fundraiser that raised a million dollars. He told me he works closely with them and he would be happy to be the link between us. The things he has offered to do are bigger than anything I could have ever thought possible. I mean, I know I have huge goals and a very different vision for your Foundation, Ronan. I know how much I believe in you and what that little face of yours is going to do. Now, here is this huge Rockstar who believes in you too and is offering to do whatever he can to help. Here is a Rockstar who is not only talking the talk, but who wants to walk the walk. He wants to meet with me before the end of the year to get the ball rolling on some of the things we talked about. I started to cry. I asked him where this huge heart of his came from. He sounded choked up and I just started thanking him over and over. We left it by him saying, he would not be in touch next year…. he would be in touch in a few weeks so we can figure out where exactly we can take this. I hung up the phone. I sat in my car and cried. For so many reasons. The timing of his phone call could not have come at a better time. You know what I have been struggling with. If this was ever a sign to stop second guessing myself and my voice, this was it. This is it. I know not everyone is going to be o.k. with the way I’ve chosen to express myself because people are afraid of the truth. I don’t want to appeal to the everyone’s of the world. Because the everyone’s of the world are not worthy of your beauty. I believe the world is changed by the unique people of the world who are not afraid to take chances, who think outside of the box, who bend the rules, who don’t conform because they follow their hearts. I believe the world will change because of the people like Bret Michael’s. A man who has such a big voice but an even bigger heart. This is so you, Ronan. This is all you. You would have been so proud today. I smiled and cried because this is so fitting for you. You and your love for all things Rock and Roll. You and your wild and free ways. Because ALL GOOD THINGS ARE WILD AND FREE. In life and in death the wild and free, doesn’t change. It lives on forever.

So, after I stopped pinching myself today, I started putting together a plan. I ran some things past your Daddy. I tucked in your brothers. I fell asleep for a brief amount of time thinking about how the power of you and our love, really is moving mountains. I am so thankful that there are such good people out there, who believe in us and who want to help be a change for things like Neuroblastoma so that one day, a mommy and daddy don’t have to endure what we are having to survive. I told your Daddy how the thing I loved most about the Bret Michael’s story was that how it just came to be, naturally. How it wasn’t forced. I truly believe that is how the best things come about. I don’t want to have to plead my case to thousands of different people as to why you are so worth fighting for. I just want to continue our love story that is never going to have an ending. I just want to continue to write the things I think or feel. And if people like Bret Michaels are so moved that they want to help… well, that shows me that what I am doing, is a step in the right direction. I don’t want the “you,” to get lost in all of this. I refuse to let you become a “brand.” I refuse to let you be treated like a business transaction. You are my son. I promise, I will not let the you in all of this, get lost. Ever.

That is all for tonight Ronan. Thank you for being behind this. I know this is all you. I know it is all you, who is touching so many people out there, who are worthy of the beauty you are bringing to the world. The timing of everything has been too impeccable for you, not to be the one behind all of this. You were much too wise for this earth. It was always so obvious to me how different and special you were. The fact that you are making things like this happen, makes me trust even more that our adventure is far from being over. I am just here to sit back and let you guide me. Thank you for guiding me during the times that I feel the most lost.I trust in you. I believe in you. That is enough for now. G’nite baby doll. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo