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

Sink or Swim, Baby. What’s it gonna be??

Hi Ro baby. It’s funny how much I look forward to this time with you at night. After the house is quiet. I think of this as my Ro time. The time I get to spend with you, taking care of you now. It’s so precious and dear to me. After the days which are usually pretty busy, this is my way to unwind with you and I treasure every second of it. Thanks for inspiring me so much that I always feel like I have so much to say to you. I am lucky in that regard.

I’m trying to remember the past couple of days. I still have a hard time remembering the things that we have done. Sunday flew by. I honestly cannot remember what we did. Today I dropped your brothers off at school. I left Macy here so she could get some work done. I ran some errands and got caught up on some things. I came home later in the afternoon and picked up Macy. We went to grab your brothers from school. We took them to eat. We wore fake mustaches. It was a sad day, but I tried my best to make it light and happy for the sake of your brothers. I didn’t want Macy to leave. I was sad about it all day. We took your brothers over to Katie’s to say Hi and so Macy could say goodbye to her. We came home and I did all the normal things that normal moms do. I made dinner. I put away laundry. I did dishes. I helped your brothers with their homework. I faked the mommy role very well today. Gold Star for me!

Quinny and I took Macy to the airport tonight. Everyone was sad to see her go. Even your Daddy. I’m telling you, she fits in so well with our family….. it kills me that you are not here with us to be a part of the Macy Magic anymore. She hugged Quinny goodbye as the tears poured down her cheeks. It was my turn next. I just held her, we both cried and said we loved each other. As soon as I got back in the car, Quinn asked when Macy could come back. I told him I hoped soon, but if not we would go and see her. I am not going to let so much time pass between seeing her again. Macy is healing for all of us. Macy is our sunshine through all of this. She makes the darkest days, sunny and bright. But the good thing about Macy is…. if the days need to be dark, she’s o.k. with that too. If the days are dark, she is the little ray of sunshine peeking out behind the clouds. I appreciate that so much. Love you Macy Wood in Da Hood. Thank you for everything.

So Ro, now what? Back to this life. Back to trying to figure things out. I’m trying to make sense of so many things right now. I feel confused and sad. I had a long talk with Dr. Jo yesterday about some things that are going on. She is one of the few people I trust anymore. I’ve had so much crap going on that I actually sent her a text that said something like, ” You would tell me if I were crazy, right?? Everyone around me is making me think I am losing my mind.” She called me. We talked for a good 45 minutes. She told me that I was indeed not even close to crazy. But to the outside world, the normal world may think that I am, because they don’t get it. They may think that they do, but if they haven’t lost a child, they cannot even come close to understanding. But it’s been 6 months Ro. The whispers around me are saying, “Shouldn’t she be getting better by now?” As if there is a time frame on how much time should pass after you lose a child and then it’s time to “get better,” and “get happy” and “choose the right path!” And Grief can certainly make a person feel like they are crazy. I hate that I second guessed myself. I hate that for those few minutes, I felt like I actually might be crazy. I hate that I didn’t trust myself because of all the stupid noise around me. I don’t like noise. I know Dr. Jo and I know the things she is telling me, are not because they are the things she thinks I want or need to hear. She will always be truthful and honest with me. If she thought I were crazy, she would tell me. The thing about Dr. Jo is, she would tell me from an honest place and I would listen to her. She would tell me if I were crazy and she would embrace my crazy. She wouldn’t ever judge me. She wouldn’t ever tell me what I am doing is right or wrong. She would allow me to do this the way I felt was right, without being too overbearing or too opinionated. Or too pushy. You know how well I do with judgmental and pushy people. I don’t. I don’t and I won’t tolerate it. I’ll shut down. I’ll push away. I know who I am, Ronan. Faults and all because I do have many. I know who you are. I know what you expect of me.

I don’t know much about this life now except it is really, really, hard. Hard in a way, that I never knew life could be. Because the real world does not teach you about things like losing a child so therefor, you have to navigate this the best way you can…. without any sort of floatation device or paddle. Sink or swim, baby. Most of the time I feel like I’m sinking but then I remember the reasons why I need to try to swim. Why no matter how many people try to drown me….Inferno Fuckwad Bob being at the top of that list…… the reasons that I will continue to fight my way to the top of the water so that I can reach the surface and breathe again. Because I’m a fighter the same way you are. Because I started this blog and I’m not going to change a thing about it. I’m not going to stop writing it. I’m not going to be worried if it offends people or turns certain people off to supporting your Foundation. I’m not going to stop being me. Sad, happy, stupid, immature, angry, silly, crazy, goofy, honest, raw, scared, brave, and truthful. This is me. This is you. This is our world now. This is all we’ve got together and I’m not selling out, for anyone. I know who I need behind me. The one person that matters the most. Your Daddy. He is behind me. He supports this craziness. His opinion is the only one that matters to me. I know where we stand on this. It’s together. For now. That may change one day. If that time comes, I will sit down and listen. But now, this is the way it is. I’m not conforming. I’m not sugar-coating. I’m not going to stop being true to myself and who I am. I’ve been this way, from the beginning. It’s nothing new. It’s not as if I’ve pulled a 180 here and all of a sudden, I’m screaming from the rooftops for Cancer to Fuck OFF!!! instead of “Gosh darn you Cancer! Thanks for killing my son!” I’m not going to ever stop being true to you and the way you lived your life. I started this my way and that is how I intend on keeping it. I’m not going to let a bunch of men in black suits scare me off. I’m not conforming. I’m not here to fit in. I’m here to be me. Love me or leave me. You died, Ronan. But you still live in my heart, mind, body, and soul. You are my heart which is what I’m following here because it makes me feel like I am alive, for as much as I feel like I am dead. I don’t care what the outcome of all of this madness ends up being as long as I know I remained true to myself and what I believed in. I’m not living a life any other way. I’ve learned in a very cruel way, how short life really is. I’m going to live a life that I am proud of and if that is a disappointment to others, than so be it. I think to live a life any other way, is a very sad, sad life indeed. I think to expect anything else from a person who has just lost their baby, is just mean. There should be no expectations, no disappointments, no judgements. The only thing that there should be is unconditional love. And acceptance. Nothing else. Nothing more. It’s so simple, why make it complex?

So Ro. That’s it for tonight. Your daddy is having a really hard time right now too. 6 months of being without you is so much harder than the first month of all of this. That’s one of the many dirty little secrets nobody tells you about losing a child. It gets worse, as time goes on. Your daddy is doing the same thing I am now. He is looking for you. He thinks you are still here. The shock is wearing off for him too. The emotional anesthesia is fading away and it is pure and utter torture. It at times, can very well make you feel as if you are going insane. I think I miss you more today, than I ever have. I love you baby doll. I love you to the moon and back. I miss you so much. I hope you are safe. I’m so very sorry I couldn’t save you. I hope you know how hard I tried. I hope you forgive me. G’nite Ro baby. Sweet dreams.

And P.S. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!FUCK YOU CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

xoxo

Happy Fucking SucksGiving!!!!!!!!!!

 

 

 

Ronan. Well fuck. I had an entire post written and I went to update something else and it got erased. Bloody Hell, baby doll. Guess that’s how this day had to start off since it’s our first official Fucksgiving. Or Sucksgiving. Or Macegiving. Or the sweetest one of all, RoGiving. Yup. It’s here. That stupid time of year. When all of the normals out there are sitting around giving thanks on today, when they should be giving thanks every freaking day that they are alive, with their healthy kids. I know our little secret though. Our little secret about all of our darling little readers out there. Well, most of them. I’m sure there are assholes out there who read this blog and just go about their ignorant ways. We can’t save them all, Ro. I know our most beautiful lovelies are spending this Sucksgiving, differently, because they are all thinking about you. And how truly blessed they really are. I know none of them are ungrateful and I know they are living each and every day, to the fullest, making the MOST of the messes their children make because they are so thankful to have them there to make messes. I’m not going to lie though. The thought of everyone else, getting to be extra grateful, because of you; because of us and our story, makes me sick to my stomach. It makes me sad. It stings. But it is the gift that you left behind. A gift that I am trying my hardest to be grateful for. But you know Ro, that Thanksgiving has been banned at our house this year. I have NOTHING to be grateful for. And I’m sure to some, this makes me seem like an ungrateful beoytch. But I don’t care. Because I know what the normals out there are all saying because I have been hearing it all week. “You have so much to be grateful for.” “You have the most beautiful sons and husband and friends.” Shut up, Fuckwads. I am aware of the beauty that surrounds me but that doesn’t take away the fact that you died and you don’t get to be here with us on this fucking ignorant holiday. That doesn’t change the fact that all I want to do today is survive because I made a promise to our Mr. Sparkly Eyes and to Dr. JoRo that I intend on keeping only because I keep my promises. And I won’t break them to those two because they are walking this dark walk with me and will never turn away, no matter how painful it may be. And yes, because of your Daddy and your brothers. That is a given and never even needs to be said. So Fucksgiving is here. And I cannot wait for it to be over.

I’m so sorry I have not written is so long. I have been so busy. So tired by the end of the day, that I have been crawling into bed at night and passing out. Without the Devil Ambien. Passing out from mental exhaustion. Macy is here. I know you know that. She got here on Friday, so she has been here almost a week. She is sleeping in your room. Can she just move in with us, please? New York Miss Macy makes everything better. EVERYTHING. You know, Ro. I know we have only known Macy for just about a year but FUCK…. she is one of the biggest gifts to come of this bloody nightmare. I’ll never forget the first time we met her and when she came bursting through the doors of the Ronald McDonald House from the cold streets of New York with her big eyes, just like yours. Her sweet smile, long flowing hair, and her arms full of gifts for you and your brothers. You were always so leery of strangers, but you fell in love with New York Miss Macy within seconds. I watched your little eyes light up as this stranger chased you around and had you giggling within minutes. I watched the way that I was able to forget that you were indeed, my very sick child. It was pure magic. It was so natural. It was true love. New York Miss Macy stayed with us the entire time we were in NYC and helped take care of you. NY Miss Macy, moved away to San Francisco and when we had to go to that city, to look into a treatment for you, it was her that you could not wait to see. New York Miss Macy came here before you passed away, to spend some time with you before you left. New York Miss Macy, came back for your funeral. New York Miss Macy is here now, for Sucksgiving, because she knows I would not be surviving this, without her. New York Miss Macy has spent all week with me, your Daddy, and your brothers. She has been cleaning, doing laundry, making beds, rubbing backs, pouring dish soup in the dishwasher by accident which has caused a never-ending soapy mess which has left me in giggles. She has laughed with me, cried with me, and listened to me while I scream, cuss, and stab food to death. She went up to Sedona with me for the day to see Dr. JoRo. We spent the day talking with Jo. We all went on a barefoot hike. Macy provided the entertainment by trying to barefoot hike with us, but she could only stand the pain for so long. Dr. Jo and I cracked up at the way she winced in pain with every step. She was a trooper for even trying. Macy drove us home from Sedona as I was so exhausted from the day that I could barely keep my eyes open. She was just as tired as she spent much of the day, crying with me. She is doing exactly what I need her to be doing, Ronan, and I haven’t even had to ask or tell her. New York Miss Macy is walking through the dark side, with me. New York Miss Macy is just letting me be. New York Miss Macy has never left. New York Miss Macy, is not running away because she does not know what to do with me. New York Miss Macy is not just our friend, Ronan. She is our family. Do you know what she did this morning, on FUCKING FUCKSUCKINGCOCKSUCKING Sucksgiving? She had a surprise for us. Yesterday, she had our Mandy Bee help her run an errand so she could do something for us today, for you. She went out and found the most beautiful purple tree for us to plant in our backyard. She wrote us the sweetest card that I could hardly read because just seeing the tears pour out of her eyes, said it all. She is that thoughtful and her heart is so big that it is capable of taking this sad, sad, house and filling it with a love that everybody feels, even with your absence. On everyday but today, because I am banning this holiday, I am so thankful for that girl. The girl that some people tried to tell me, would go away, after all of this was over because she “chose,” to inject herself into our “situation.”  Macy did not choose to inject herself into anything. You chose her for me, Ronan. You chose her because I think you always knew, it would be her that would be the one to help to save me. I always knew it too. I always knew that Macy would not up and forget us, or you. I was a first hand witness of how the love for you, shined through her eyes. How it still does. How it always will. That will never change. If anything, it will just become stronger. So, here we are today. Still in our pajamas with the football on, your brothers running around the house, Macy curled up on the couch, reading a magazine. The perfect family. Almost, baby. Almost.

Yesterday, Ronan. I am glad yesterday is over. Guess what I had happen to me for the first time? I woke up from my sleep with an excitement that filled my entire body. I sprung out of bed, my feet hit the floor, and I got about 10 steps in as I was headed to your room, to wake you up. I had forgotten that you had died. As soon as I remembered, I fell to the floor and started to cry. I picked myself up, got into the shower and continued to cry. I got ready, while still crying. I went and called Dr. JoRo, as I couldn’t get myself under control. When I finally composed myself enough to finish the task at hand, which was packing your brothers lunches, I went about my day but I couldn’t shake the feeling from the morning. To feel that excitement, that pure bliss and then to have it all ripped away within seconds was like losing you all over again. It shook me to the core and left me in a fog for the rest of the day and night. Fucking BULLSHIT. Fucking BULLSHIT that Cancer killed you. My healthiest child. Fucking BULLSHIT that we are all stuck here, without you. Nothing will ever be enough, Ronan. Nothing will ever take away the way I yearn for you every second of the day. It is just something I will have to learn to live with. The way that Bella from Twilight (yup, Macy and I totally went to see that movie) will have to learn to live her new life as a vampire is the way I feel. Except lucky Bella. She will never have to be apart from the love of her life, Edward Cullen. Fuck. The whole time I was watching that movie I wished so badly that Vampires were real and that I was one of them and when you died, I imagined your little body laying in the bed. I imagined myself biting your body to inject you with my venom to turn your into a little Vampire, so that we would never have to be apart. I played that picture in my head, over and over again. You would have been the most beautiful vampire. Edward Cullen would have had nothing on you. If only Vampires were real. If only you just hadn’t gotten sick with Cancer and died. If only the fucking medical world would get a clue. If only Childhood Cancer, was as recognized as AIDS. If only. I have so many of them in my life now.

I have to go now Ro, baby. I have to get ready for our White Trash Chinese Eating Mustache Fucksgiving that we are going to try to have. I have to get ready to beat the shit of our 1 or our 3 pinatas. I’m so sorry you are not here. I’m so sorry I couldn’t save you. I miss you so much. I hope you are safe. I will love you forever.

xoxo

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