We are slammed busy foundation wise here as we are gearing up for September, which is childhood cancer awareness month. You all have been asking about The Gold Party like crazy; and we don’t blame you as last year was a huge success.
This year, we have decided to do an entire GOLD weekend. Please keeps the dates of September 27th and 28th open and ready. We have 2 different events we will be doing as we had some amazing opportunities come our way.
I promise details will be coming soon, but it takes time to finalize it all.
Hope you all are well!
Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that. About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.
It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.
We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.
On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.
“Hey, do you guys want me to move back in with you?! That would be so fun!”
They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.
“I really would. You guys are really awesome roommates.”
I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.
Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.
I miss you. I love you. I hope you are safe.
Ronan. Life is all about choices. I have to make choices every single day. For instance, it is a choice for me to get out of bed every single day and be a functioning member of society. That is a choice I didn’t used to have to make in my life, I was just so excited about the day and what was to come, that I would spring out of bed after mostly being woken up by you. Now getting out of bed every day is harder. But I make the choice to do it. For you, for myself, and for your brothers. I have to think about the way the things I do in my life and what they will do to your brothers as well. I know having a mom who doesn’t get out of bed, would only hurt them. I’m trying my best not to cause them any extra pain. I am trying, but sometimes I get so tired of all of this. It takes a lot of energy to make these choices that do not come effortlessly to me anymore.
Saturday came. I was o.k. with it because we had a very specific plan for the day. I had to finish up an interview with NPR so a girl named Jude came by our house with the last of her questions. Your daddy did a little interview as well. I think it will be a really good piece and I cannot wait to hear it when it is all finished up. Jude came to PCH with us to get some background noise while we decorated our tree. So it was me, your daddy, Liam, Quinn, Fernanda, Stacy and Melissa who spent a couple of hours, getting your Star Wars Captain Rex tree up and decorated. The entire tree is blue, silver and white. Just like the colors that Captain Rex wore. A lot of the time, I can be really strong doing things like this. Or maybe I’m just still numb. Looking back, I don’t know how I did what I did, with your daddy and brothers there with me. The decorating the tree wasn’t bad. The being in the hospital wasn’t bad. I handled it all pretty well, like I always seem to do. I handled it all well, including when Liam went over to your Captain Rex mannequin and picked him up for a picture. I about lost my shit, but I couldn’t. All Liam wanted was a picture with the little guy. He had no clue that Captain Rex was actually wearing the costume you wore on Halloween. So as he put his arm around Captain Rex, then picked him up while saying, “CHEESE!” I had no choice but to snap the picture. I think I almost threw up. I looked back at Fernanda who had seen the whole thing. She looked as pale as I felt. OMG. OMG. OMG. That did not just happen. This is not my reality even though I know very well that it is. We all got out there soon after that. Your tree looks wonderful. So perfect. So very much you. We took a picture in front of it. The very perfect family holiday card picture, right Ro? Looking back at it now, it breaks my heart. Captain Rex looks like an actual little boy standing next to us. He looks about your size. Have we all gone mad? Who in their right minds, takes a picture like this and holds their shit together? We do, Ronan. To honor you. To bring some smiles to other kids’ faces. Because this is one choice we don’t get to make, we just have to do. For all of us. Because if we don’t do things like this, then we all crumble up and just fall apart like I know I want to do, every second of the day. But the fighter in me just won’t give into the weakness of that. I’ve got too much shit to do in this world.
We had some very good friends come into town for the night. My best friend from Jr. High. Her high school sweetheart and now husband and my good friend, too. I set them up when we were about 15. Some of the best people I know. Woody and I love spending time with them as a couple. Laura and I used to always say you and their daughter Cameron, were going to get married someday as you are so close in age. How naive we were, I guess. They came with their kids in tow. As always, it was so good to be with them. We left the kids for the night and headed out to the Bret Michaels concert. Everyone was so excited, including myself but always in the back of my mind is the reason I get to do things like this and it all revolves around because of losing you. This now means that anything beautiful comes my way still stings in a way, too. I am always very aware of our situation and the reason our life is the way it is now. The situations I find myself in, such as a great night out, with great friends, at a great concert, always come with a heavy price tag. One that I wish I never knew but this is our life now so I try to take these little gifts and grow from them as much as possible. In my life before all of this, I am pretty sure I would have been the life of the party. Laughing with friends. Being wild and free. Not having a care in the world. Now I find myself a little more reserved and quiet. I know I will never be the life of the party again. I would just rather sit back and watch the way others get to play that role now. It’s not mine to play anymore. Our night was lovely and your daddy got to blow off the steam that I know he very much has been needing to do. I found comfort in being with my oldest friends. The friends that knew me before your daddy, before kids, during kids, and after the death of you. We got to spend a little time with Bret before the concert. I had the chance to tell him thank you for all he has done and is continuing to do in this world. He has a great heart and I was so glad to finally be able to tell him thank you in person. The concert was amazing. I had to sit down throughout much of it, due to my feet hurting and just being wiped out. I felt your Poppy kicking a lot. I let myself find some solace in that.
Our friends left today. But not before I went to your room to check on Laura and her kids. They were packing up and I could tell Laura was upset. Her little one’s had been playing with your toys all day. I told her it was alright, that somebody needed to play with them. She just grabbed me and we both cried for a bit. She told me how wrong this all is and how she doesn’t know I do this. I don’t know either. I never will know the answer to that other than the obvious one which involves because if I don’t, I will die. I know that is my ultimate truth.
I need to go now, baby. Quinn is sleeping due to a headache he has had today so I am going to snuggle up to him. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.
There is a great event coming up this Saturday. It’s the First Annual Life Rocks Concert by Bret Michaels. Please buy tickets if you are in AZ and can come. It is not only going to be a great event, but a portion of the proceeds go for great causes, childhood cancer included. Love this man! He is doing really amazing things for others!
Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.
I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.
Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers
There has not been a significant breakthrough in the deadliest childhood cancers in 30 years
One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers
Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials
Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.
The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable
In today’s clinical research landscape, progress is too slow and promise too rare
Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)
Basic research generally receives more funding than translational or clinical research
Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone
Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries
Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas
Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer
Conventional nonprofit organizations are not necessarily designed to progress therapeutic development
Parents are forced to become experts in their child’s treatment
With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can
To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer
Children need help now
You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.
WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.
Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.
So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.
I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.
So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.
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.
Ronan. I guess I’ve had a hard couple of days. So many things have happened. Everything seems to be moving so fast, yet so slow. I’ll have to catch you up on some things since it’s been a couple of days since I’ve written to you. I drove up to Sedona on Tuesday to see Dr. JoRo. I could have seen her here in Phoenix, later this week but I honestly like the drive up there and back. It’s my quiet time in the car. I don’ talk on the phone. Sometimes I listen to music. Sometimes I don’t. I am always thinking of you. I cry a lot. Here in Phoenix, I feel like I am constantly on the go. It’s a race that often leaves me exhausted and I don’t get to sit and be quiet much. I am still trying to find that happy medium of grieving for you and letting my self being absorbed in the pain; without slitting my wrists. Sometimes it hurts so much that I’m scared to sit and just let myself just be. Sometimes I don’t think I can handle the pain. I worry about what will come of it. My mind can slip into a very dark place, with the blink of an eye.
My time with Dr. JoRo was long. Grueling. Good. We talked about everything. I always find myself staring up at your pictures a lot that she has on her shelf of the thousands of books that she has read. I cried a lot. She cried too. We listened to a song together as the tears slid down both of our cheeks. There was a lot of crying. There was a lot of fucking fuck words used by the both of us. She is helping me with a little research as far as trying to figure out who we want to help fund treatments for Neuroblastoma. I don’t want any of this money to go towards a fancy hospital building and advertising. I don’t want this money to go towards building a wing of a hospital with your name on the fancy door. FUCK FANCY. This money has to go directly to the RESEARCH aspect of this disease. This money that we are trying to raise will go to the team that we believe in with our whole hearts and souls. The team that we feel will up the survival rate and ultimately, find a cure. This has to be a doctor/facility that is going about things differently. Because obviously what they are doing for this disease is NOT working. But they keep doing the same thing, over and over. If you survive Neuroblastoma, it’s by luck of the draw and nothing more. I have 2 doctors I am interested in. I’m putting their names out there tonight. Dr. Giselle Sholler and Dr. Yale Mosse. I know Dr. Mosse from Chop. She is the one who has a little piece of my heart due to her passion for finding a cure for the nasty disease. But her hands are tied by the COG. I am not a fan of the rules she has to play by. If anybody wants to throw info my way about Dr. Sholler, or anyone else, feel free to do so. I’ll take all the help I can get. I want to meet with them both. I want to see the evidence behind what they are doing, and why they think it is going to work.
Dr. Jo knows you shouldn’t have died. But you did. She is going to help me every way she possibly can. She is doing more than just saving my life. She is going to help me fight this Childhood Cancer nobody gives a fuck, BULLSHIT. We talked about your Foundation. She tried to tell me I didn’t have to do any of this if I didn’t want to. I looked at her, gave her a half-smile and told her that it wasn’t my choice anymore. I told her I am not choosing to do anything. For me, this is not something that I am choosing to do. It is something I HAVE to do; just like I have to breathe, to stay alive. She looked at me and said she knew I was going to say that, because she felt the exact same way, 17 years ago when her baby girl died and she was locked in a closet, going through the Yellow Pages, trying to find someone to help her get through losing her baby girl. There was nobody. She almost died from the pain. She swore to Chey if she lived through it, she would change this and help other parents. The MISS Foundation was born because of her pain and because she survived. She survived, Ro. And now look at all the people she is here, helping. She is saving the lives of so many parents who feel so alone. She is a walking billboard for surviving one of the worst thing that can happen to a person, but she still managed to come out the other side even more beautiful than before. Stronger. Smarter. Wiser. It changed her in a way that a person never wants to be changed. As sick as it is, the death of her child has turned Dr. Jo into someone who fucking lives on this earth, walking on water. I know she doesn’t feel this way, as she is so ridiculously humble. But this is the way I see her. To me, that woman walks on water while cussing up a storm which makes me love her even more.
After I got home from a really long Sedona day, I had a meeting to go to for your Foundation. We had to choose some new board members. As of now, our board is really small and intimate. I want it to stay this way. I need the people on it, who have walked through hell and back with me. Who you knew and loved because they are family. My sisters. The board meeting was VERY formal which was so weird to me. I got about half way through it but then my head started spinning. I lost it. In the middle of everything, I buried head on the table, in my arms, and just started bawling. I felt the hands of Fernanda and Tricia rubbing my back. I stayed that way for a few minutes. Then I just got up and bolted out of the restaurant, crying, crying and crying. Just like that. You know what I wanted to do? I wanted to run really, really, really far away. To the most dangerous neighborhood in Phoenix. I wanted to run out in the middle of traffic to get him by a car. I decided the boots I was wearing were too cute to ruin, so I sat down on a bench instead. I sat and soon Fernanda came and sat down with me. She sat and held my hand and pressed it up against the locket that I gave to her with some of your ashes in it. She kept asking me where I was. Where my head was. I couldn’t even answer her. I just sat and cried. I think we sat there for about 20 minutes. I ended up trying to gather my thoughts. The fact that I was sitting around that table last night, talking about you, like you were a business made me sick to my stomach. It was too much for me to handle and I went into it, completely blindsided. I felt like I was being beaten to a pulp. I felt like my insides were being ripped out. I felt like I wanted to just die. I went home, after that meeting, looked at Warden Woody and said, “Give me a fucking Ambien.” He tried to argue. I wasn’t having it. The running off of 5 hours of sleep, for the past 3 days was caching up with me. After yesterday and last night, I couldn’t do another night of tossing and turning. I popped that little Devil and it was lights out until 7 a.m.
Today. Groundhogs day, all over again. Met a Lovie for coffee. Cried. Our lovie, cried too. Talked. Cried. Made some promises. Took a drive with her. It felt nice. Ran to meet Miss Mandy Bee for lunch. She came wearing her Owl SPIRIT HOOD because she is that crazy, that she thinks she is a Goddamn Owl, in real life. And we are both that weird that we like to wear our animal Spirit Hoods, everywhere, just the way you and I did. I’m wearing yours now, as I sit here and write. We sat outside at America’s Taco Shop. Mandy had some exciting news about getting the word out there about you. Just as we were in the middle of talking about you and I was starting to tell her what bullshit this is, that you died of this disease because nobody’s voice has been powerful enough to make the fucking world stop and LISTEN. Why the fuck does this have to be me? This should have been somebody else, 5 years ago and then you would not have to be fucking DEAD. I started to get really upset. I started throwing a pity party to Miss Mandy Bee. Why me? Why him? I don’t want this. I want this to all go away. I want him back. I don’t want to stay on this earth. I want to die. I don’t want to fucking do this. Just as I was saying those words, Ronan…..He appeared. Outside. On the patio where Mandy Bee and I were. Ben. What the fuck. Somebody is clearly messing with me, Ronan. Ben with the Bald Head. I looked at Mandy. I seriously thought I was dreaming. Mandy watched me, she grabbed my hand. Do you want to leave, she asked? No, I said. His Dad came and sat down and said Hello. His mom came out next. She looked at me and said, “You’re Maya, right?” I said indeed I was. She asked if I remembered her from the clinic. I had forgotten her face. But I remembered Ben’s. I stood up to give her a hug. Her husband hugged me as well. We sat and talked. They looked sad. They looked scared. Ben looked beautiful. I wanted to eat him up. I wanted to spend my whole day getting lost in his dimples while kissing the top of his bald head. His mom kept saying she felt like they were upsetting me. I was upset alright, but it wasn’t for the reason that I think she thought it was. I was upset because just 10 minutes before they arrived, I sat and bitched that none of what I was doing, mattered because you are gone. I gave into the selfish Maya that sometimes comes out because the bottom line is, YOU ARE DEAD. But Ben is not. Ben is here. Ben is still fighting. Ben saved me today. I know that was a sign from you, Ronan. That was too much of of coincidence, for it not to have been. That was your way of communicating with me. That was your way of saying, “Hey Mama! Don’t give up! I’m right by you, helping you. Mama, you have to be the loud voice now. You have to take everything you are doing and keep going, for all the other kids out there. For all the other kids who deserve a future. For me, because this is what we were meant to do, together.” Ben was you today. And Ben was exactly what I needed at that exact moment. I know it was you. Thanks, Ro. I’ll keep on truckin’ until the world turns into a sea of Gold for SEPTEMBER. But PURPLE, for you. Ben gave me a big hug goodbye. I kissed the top of his head. It reminded me so much of yours.
I spent the rest of the day, lost in what had happened at the Taco Shop. I ran over to Katie’s store. I was sitting at the counter, with my computer, doing some things. Christy and Katie were behind the counter, working. Pandora was on, as always. As I was sitting there, one of your favorite songs started to play. Angus and Julia Stone, “Big Jet Plane.” I sat there, stunned. I looked up and said to the girls, “This was Ronan’s favorite song.” I covered my face and started to cry. Christy asked if I wanted her to turn it off. I told her no. About halfway through the song, my phone rang. Of course it did. Was this you too? How does this always happen, every time I seem to be having a really hard moment? Our favorite lovie always knows when to call.
I picked up. I said one word.
“Why are you crying?”
-how the fuck does he know i’m crying?? all i did was say hello.
“I’m not. I’m fine. I don’t know.”
– i start to cry, harder.
“What’s going on? Yes, you are, cut the bullshit and tell me what’s going on. Please.”
fuck. why can’t i ever pull the wool over our lovie’s eyes? i don’t want to say why i’m crying. but i did.
I think it went something like this……”Because I’m sad. Because of the song on the radio. Because of the board meeting where Ronan is a business. Because I miss him. Because of Ben at America’s Taco Shop. Because of Thanksgiving. Because I have to fucking survive Thanksgiving. Because I don’t know how I’m going to get through it. Because I haven’t slept. Because I want him back. Because I JUST WANT HIM BACK.”
“I’m sorry, darling.”
I don’t remember much more of the conversation. But by the time it was over, I had stopped crying. It was enough. It was like an invisible hug, from you.
I left to pick your brothers up from school. Quinn had a sore throat so I had made him a doctor’s appointment earlier in the day. I stopped to feed your brothers, before our appointment since we didn’t have time to go home. I went into Jack and the Box while your brothers waited in the car. It was pretty empty. There was a man at the counter. You could tell he was homeless. He was dressed as nice as he could possibly be. His shirt was tucked into his pants. He was older, probably in his 60’s. He was pulling out coupons to pay for his 3 dollar meal. He smelled awful. He needed a haircut and a shave. He was hungry. I could tell he was so very hungry. I waited my turn. I watched this man with the kind, sad eyes. He didn’t seem to notice me. I watched as he paid for his food. I watched the way he sucked down his drink like he had not had anything to drink, in days. I’m ashamed to say, in my old life I probably would have felt sad for this man, told myself you are so lucky, Maya. But it is very possible I would have just looked the other way while counting my blessings. Not today. Today, I wanted nothing more but to take this man home. Feed him. Let him shower. Give him clean clothes and a bed to sleep in. I wanted to sob for this man. I wasn’t sure what I was going to do, but I knew it wasn’t going to be nothing. I paid for my food. I watched the man, standing at a table, putting his coupons away. I took out one of your cards. I wasn’t sure how do approach this man, as I didn’t want to offend him. I walked over to the table that he was sitting at. I gave him one of the cards with your picture on it. I handed him a 20 dollar bill. He looked at me and said, “No. No. Really? Is it that obvious?” I simply said, “No. Not at all. This is not from me. This is from my son. He died of cancer. He wants you to eat.” The man tried not to accept my 20 bucks. You could tell he wanted it, but you could tell he was also a man who still had a pinch of dignity left. He told me thank you. He told me that I should save my 20 dollars and give it to the humane society. I told him I didn’t want to save an animal.(sorry. i’m am a animal lover. but these days, kids with cancer just tug at my heart a little more. today, this hungry man, tugged at my heart a lot more) I told him to please take the 20 bucks. I told him to go and do something kind for someone else. He promised he would. I believe him. He told me, that he had just spent his last 3 dollars, on his meal. I am such a skeptic of human beings, Ro; but not today. Today, I believed this man. Today, I believed in the human spirit and I believe that, because of you. It’s days like today that I know that you are making me a better person than I could have ever imagined. It’s days like today that I realized that I need to stop fighting all the little gifts you are leaving me because I know they truly do exist. And I know I am worthy of receiving them. I know they won’t bring you back but I know they will keep you alive.
I have to go now, Ro. Too tired. Too sad. Too much. I love you. I miss you. I’m sorry. I hope you are safe. I love you to the moon and back, baby boy.
One last thing. But not a little thing. A HUGE thing. Bret Michaels. Bret Michaels the kick ass Rockstar who is the genius behind the band, Poison. Bret Michaels went on the Regis and Kelly show today. He wore your F U Cancer bracelet, Ro. He is spreading the word about you. Can you believe this???? I am in awe. We so need people like this, behind your cause. We so need a voice for Childhood Cancer. Education=Awareness and Awareness=CURES. People have to start listening. Because of what that man did today, they are going to listen. I have a feeling the gorgeous woman in his life, had a little something to do with this as well. It takes a strong family united, to get things done. Today, they did this, for us. For YOU. For all the other parents and kiddos out there who have been forced into this nightmare. For all the parents and kids out there who are helpless and so scared. He helped us all today and I wonder if he has any idea, how much it means? How this could really get the ball rolling and start changing things. Because babies/kids/teens need to stop being fucking MURDERED by Childhood Cancer. So Mr. Kickass Rockstar Bret Michaels. Thank you from the bottom of Ronan’s wild and free heart. I know you know that all good things, truly are wild and free. You are an amazing man. And gorgeous Kristy. Thank you for being the raddest wild and free mama, behind this man by doing something so selfless and kind. You two, are amazing.
Ro baby. Did you ever in your life think that for only being almost 4, that you would have so much power? I always knew this. Your beauty alone moved mountains while you were among the living. Now look what it’s doing and you’re not even here, Ro. You are that special, beautiful, and magical. You will always be mine. And I will always, be yours. Forever. I love you.