Nothing like some hometown love to kick cancer’s ass

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Ronan. I don’t remember the last time I’ve written to you and I don’t like that. My days are so consumed with trying to be the best mama to your brothers and sister. This means no computer time, only a little time is spent posting the never ending cute little Poppy pics on Instagram as my way of trying to keep up with all of your lovies out there. They seem to be growing by the day and that makes me so proud. My nights have been spent writing and working on this book. My nights have been spent writing accompanied by hot flashes and puking over the toilet again due to living this fucked up “journey” over in my head again and writing it all out to tell our little story. Don’t get me wrong, I am grateful for the opportunity, but it’s still very difficult. I got through your diagnoses and I had no idea writing about that again would leave my head spinning in the way that it did. I can’t imagine what writing about your death will be like for me. This is the part where all you lovelies chime in on how brave I am. I don’t feel brave. I just feel like a mama who will do whatever it takes to continue fighting on for her child. Wouldn’t every mama walk to the end of the earth to make sure their child’s legacy lives on? To make sure good things continue to go on, because of their baby? I would like to think so. This is also just me, grabbing on to anything and everything I can, to still get to be your mama and parent you, Ronan. I don’t get to teach you all the things I dreamed of. I don’t get to scold you when you are being naughty… The only way I can get to you, is through these things that I am so desperately trying to do. Sometimes I feel like I’m grasping at thin air, sometimes I get tired and so very sad, but I have never in my life wanted to give up or quit. No matter how frustrated or sad I get because I know at the end of the day, you’re not coming back. And that is all I want more than anything in the world. But all the gratitude and good things will keep me going… I promise you that.

Today is an amazing example of good things that will keep me going. My little hometown showed some major RoLove today. I got asked to lead a 5k run that some girls I know wanted to throw together at our Lake Sacajawea. Of course I said yes and that is pretty much all I did. Everyone else buzzed about, working their butts off to make this “Run Like A Rockstar” 5k run, happened and it ran smoothly. All I did was try to get in a few runs before the big event so I could actually try to make it around the lake without having to be pushed in a wheel barrel. We had such an amazing turn out and I felt like I was floating in a sea of purple the entire day. I ran the lake as fast as I could with an injured knee from my previous running that I have been doing. I ended up walking a bit too but I was fine with that. One of my oldest friends, Laura was sweet enough to stay back with me so I didn’t have to walk alone. She talked about how she was so excited to run this but then pulling up to park and seeing your little face on the poster was just awful. How this was such an awful reason to have to run. I told her I knew. How surreal this all still seems to me. I know I used the word unfair through my tears. How could my baby be just fucking dead? How could my totally healthy, beautiful baby boy be so healthy, and then have fucking stage 4 cancer just like that? Through her tears she told me she was sorry, but how proud she was of all the things we are doing. I am proud, too Ronan. I know we are and will change this world in a very big way but FUCK. What I wouldn’t give to have just one more second with you. What I wouldn’t give to have my old life back. I can’t though. I know this but sometimes I like to close my eyes and just pretend.

I finished the lake and my knee actually felt o.k. My time sucked but today, I had nothing to prove at all. I was just happy to finish without injuring myself even more. You know who kicked ass in the race today, Ronan? Your brothers. I had no idea that I had little runners in our family! Liam has been going on some runs with me at night, but I had no idea he could run 3.6 miles in 30 minutes. Holy smokes I was blown away! Quinn came in just a few minutes after him. Liam ran pretty much the whole lake, by himself. This totally brings tears to my eyes because I know he did this for you, and how proud you are of him. I am so proud of them both not only today, but always. Such amazing little boys they are.

After the race I got a chance to meet some really lovely people who all love you so much. It was an emotional day but so rewarding as well. I am so grateful to everyone who came to support your foundation. Thank you to all of my rad hometown babes who worked so hard to get this all done. I know you are doing these things for the RIGHT reasons and nothing more than that. That is so important to me. Thank you for never forgetting my little guy who continues to inspire you daily. Thank you for keeping his mama going by showing me how much the power of love can move mountains. I am so proud to call you all my friends and I will never forget what you did for us not only today, but always. This is just the beginning. I cannot wait for next year and I am so proud to call this place, home.

Alright little man. I need to get in some hours working on this book. I talked to your Sparkly the other day. I miss him when we are away so much. He knows that I’ve been staying up late, working on this book and I listened to him as he said with urgency in his voice, that I need to get this done so I can “Fuck Cancer.” I know what the urgency meant. It meant that kids are dying, dying, dying and nobody is paying attention. I know he feels the same way that I do, that this book is not only our beautiful, tragic love story, but it is another way to spread awareness as well. I am doing the best I can, working as fast as I can, but I also know this cannot be rushed. All I can do is my best and I want to do this the right way, not the rushed way. I am just proud that I actually started it and I am making progress.

Alright little man. Back to the book. I miss you. I love you. I hope you are safe. G’nite, babydoll.

xoxo

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A SPLENDID Event!

 

 

 

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How SPLENDID is this! Get this event on your calendars for 4/11/13! A discount at one of our most favorite retailers AND they are committing a minimum donation of $1000. 3 cheers for SPLENDID!

Today is 22 months since you left this world.

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Ronan. 22 months seems impossible. 22 months seems like a joke. 22 months does not seem real. We all miss you so much.

Today, is also Macy’s birthday. I know you would not want me to be sad on this day. I know if you were here, we would have woken Macy up by calling her on the phone and singing, “Happy Birthday,” to her. I will have your brothers do this. I’ll think of you, while they are doing so. I know how much you love your Macy. How much we all love her. She misses you so much.

I love you, Ronan. Happy Birthday, Macy. You are my other soul mate in life. The sister I never had. Thank you for always making us smile and laugh, even on the hardest days. I always say you are one of the most special gifts that Ronan left us.

We love you so much.

xoxo

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You should all be so proud. You helped us do this. Thank you for your continued love and support!

 

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RESEARCHERS TO DEVELOP ALK-BASED IMMUNOTHERAPY FOR NEUROBLASTOMA

The Ronan Thompson Foundation and Solving Kids’ Cancer award $100,000 grant to fund new therapeutic to treat children with neuroblastoma

New York, New York – November 30, 2012 – The Ronan Thompson Foundation and Solving Kids’ Cancer have announced a charity partnership to jointly sponsor breakthrough clinical research of a new therapeutic antibody for neuroblastoma. Together, they will award $100,000 to the Children’s Hospital of Philadelphia (CHOP) with the goal of improving survival for children with neuroblastoma, a deadly cancer that usually strikes infants and preschoolers.

This promising research will be conducted by CHOP physician-scientist Yael Mosse, M.D., who garnered international attention for her discovery of a mutation in the ALK (anaplastic lymphoma kinase) gene that occurs in some neuroblastomas. Changes, or mutations, in the ALK gene play a role in the growth of cancer cells and has also been linked to lung cancer and lymphoma. Researchers believe that an ALK antibody will directly target the tumor cells and also help the immune system to attack the cancer, reducing the risk of a future recurrence. The plan is to use the ALK monoclonal antibody in combination with an ALK inhibitor to benefit more patients. The ALK mutation only occurs in about 10 percent of neuroblastomas, but ALK expression is found on 90 percent of neuroblastomas. Recent early-phase research conducted in the lab showed that an antibody targeting ALK expression kills neuroblastoma cells.

“By working together, we can make the world a better place for children and their families who have been affected by neuroblastoma by bringing together the best doctors, research and treatments,” said Maya Thompson, the Founder of the Ronan Thompson Foundation. “We are very excited to be partnering with Solving Kid’s Cancer in supporting the work of Dr. Yael Mosse and her colleagues at CHOP to help find a cure for this disease.”

Work is now under way with an industry partner to generate and screen potential anti-ALK antibodies with the goal of commercial production. The Ronan Thompson Foundation and Solving Kids’ Cancer will commit the $100,000 joint funding to develop the antibody and required testing to bring this promising new treatment option to the clinic for children. The hope is that a small-scale clinical trial will quickly prove the therapy’s safety and effectiveness for use in trials throughout the U.S. and Europe.

“This collaboration is an example of pediatric cancer charities coming together to quickly bring the best, most innovative treatments to our children and ultimately improve survival for this deadly pediatric cancer,” said Scott Kennedy, the Executive Director of Solving Kids’ Cancer.

 

 

 

You’re Having Headaches?? O.k. We’ll Go Get an MRI.

Ronan. I did a lot of things today. It was a productive day, to say the least. I LOVE my productive days the best when they are fueled by you, you and you. Always by you. I didn’t sleep well last night due to just normal stuff that deal with a lot now. It was much easier in my Ambien is the Devil pill popping days, when I could just say fuck everything and go into a black coma for hours. I gave that up long ago and although I am so very glad, I can’t say that I sometimes don’t miss the convince of it. I know the after effects of that little pill are just not worth it for me though as they usually involve me wanting to slit my wrists. I’d rather just deal with the insomnia.

I sat with your Sparkly for a long time today. I was frustrated about some things. Sad about some things. I go to my best non judgmental friend, for the best advice. I spatted out the things that were wrong. Nothing major. But my feelings were hurt over something silly. I was feeling sad about you. Guilty about this baby. A little family trouble too. A invitation came my way. A maybe trip to New York. I sat and talked with him about all of these things. I’ll sum up for you, what I got told in a nutshell which went a little something like this.

“Please don’t lost sight of it what it is, you are doing and why you are doing it. I don’t think that you will, but promise me, you won’t. You know the reason you are doing all of this. The only reason you are doing all of this. Keep focused the way you have been. Do not let all of this attention, change anything.”

“They don’t know the real you. These people that you are letting your feelings get hurt by. They only know what they read and the few times they have met you. I know the real you. You are so smart. You are brave. You are kind. You are outgoing yet introverted. You are shy with certain situations. You are so strong. They don’t know your childhood and what you have been through, which I know is a big part of what makes you, you. People want to see you fail. It’s ugly human nature. What you are doing is unlike anything anyone has ever done before. I really think you are going to completely change this world, darling. You already have, and you are only getting started. Look at all you’ve done. Maya. Who else in this world can walk around with Fuck You Cancer bracelets on their wrists and get away with it?”

I just replied, “No one. But maybe that’s because they just haven’t tried.”

He just looked at me and said, “Exactly. That is exactly what makes you so different. You did that. You did that within weeks of Ronan being diagnosed. You turned that into your thing, which is a metaphor for everything you are doing. You did it without caring, you did it because that is what you felt, you did it with your head held high and now look where you are. You were handed the shittiest situation in life. You could have given up a long time ago, but you stayed true to being honest and vocal about everything you are going through. Nobody does that. That scares the shit out of people. As much as I wish this wasn’t the hand you were dealt, this is your calling. Whether it be by God or whoever else is out there, you were given this because you will change this in a way that nobody else has.”

Tears started welling up at this point in his eyes. “Now I’m going to start crying.” I looked down at the ground. “Why? I said. “Please don’t cry. Please.” I watched the tears form in his eyes.

“Why…. because I’m sad, for you but so proud as well. I wish this wasn’t your story, I wish this wasn’t Ro.”
“I know.” I said. “I know.”

I told him about my New York adventure. Secret side Maya mission. He told me to book my flight. I will. Another little gift, from you that just fell in my lap and since I am such a believer in signs and timing, I am going out to our favorite city to pursue what it is, that is maybe in the works. See you in a few weeks, NYC.

This week has flown by with so many things happening. We totally won 50k from the Chase Grant contest!!!! We entered it so late, but thanks to all of you supporting us by voting and telling everyone you know to vote, we won!!!! We are all so excited, proud and thankful. A special thanks to my dear friend, Melissa for taking the lead on this little last minute project for us. Without her, this would have never happened. I truly am surrounded by the greatest people. I am so lucky in that regard.

My friend Katie let me have a little trunk show at her store last night with my “Spicy Monkey,” bracelets. We had such a turn out and I was so happy to finally meet some of my very best Ro lovers out there. Your Poppy has had me wiped out, but I powered through last night and it was a huge success. Thank you to everyone who came out to see me. I loved listening to you talk about Ronan. It makes my heart a lot less sad to listen to your stories of how he has inspired and changed you. I am so lucky to be your mama, Ro baby. You are doing the most amazing things in this world still. I miss you so much.

Last night left me feeling like I had been run over by a truck today. I had a lot to do and got through some things, only to come home so sick and tired. I fell into bed for a few hours. I didn’t want to, but I knew today I didn’t have a choice. Guess where I spent this evening. At PCH with Quinn getting an MRI. You know, because of his headaches, I am still convinced he has a brain tumor. It is so mentally exhausting to live in this world. This world of being overly paranoid about anything and everything. We will know in the morning if anything showed up. Your favorite PCH lovie called me before the MRI. “I’ll be there in the morning and I’ll call you first thing. I promise you, there is nothing there.” I responded with, “You’re telling me that I can sleep tonight?” He said, “Yes. Please sleep tonight. I promise, everything is fine.” “O.k.” I said. “I’ll believe you.” I am sure he is fine, but as you know, I can’t live in a world where I’m not 100% sure. Between last night and today, I feel like I need a major vacation… from life. Do you know where I can go for that? I do. But that’s not my call.

I had an ultra sound this week as well. I think I sat and cried most of my appointment. My nurse asked how I was feeling. I respond with sick, tired, and really, really sad. This led to about a 30 minute conversation about you. She knew a little bit about our story, but not the details. I told her most of our story, as best I could without choking on my words. It’s still hard for me to talk about everything we went though. The scariness of it. The darkness. The blind hope being ripped from my arms in the form of losing you. How everything spiraled out of control so quickly. How I didn’t even realize you were dying because I was so convinced my love would save you. We talked about this new baby and I told her that I’m not excited yet. I saw Dr. Schwartz who I think might be one of the most amazing women on the planet. She talks about you a lot which means so much to me. She told me how excited she was to see my name on the schedule and that I was pregnant again. She said she thinks everyone is so excited about this baby. I do too. I know there will come a point where I am as well. But right now, I just miss you so much.

That was my week in a nutshell, Ro. I’m tired from being a PCH tonight. I couldn’t go back in the MRI room with Quinn due to being pregnant. The memories of you, being in there came flooding back. Within hours, our whole life turned into a nightmare. Please let everything be alright with Quinny. I could not survive something like this again. I’m going to try to get some sleep now. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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Little hands, little feet, and I swear I see a Poppy smile!

“Hey Maya, it’s Taylor Swift…”

Ronan. Do I even have words to write about what happened today? How can I find the words to write about this tonight? It’s taken me about 10 hours to process the phone call I got this morning. It all started with a voicemail.

“Hey Maya, it’s Taylor Swift…”

“What???” I thought to myself. Taylor Swift just called my cell phone. O.k. take a few minutes and process this. I was waiting for your Mr. Sparkly Eyes, so I sat with this voicemail for about 30 minutes, until I was done visiting with him. It was only after I was getting up to leave that I said to him, “Taylor Swift left me a voicemail earlier.” I let him listen to it. “Really? You need to call her back,” he said. I calmly said, “I will do so, when I leave here. I wonder what she wants.” He chuckled and said, “You are something else. Nobody else in their right mind would be calm about something like that.” I left there smiling with not a clue as to what was to come.

I got into my car and was headed to Dr. JoRo’s office, but I decided to pull over to return Taylor’s phone call. I was expecting to talk to her mom, since she had told me on her voicemail that she was getting on a flight to New York City. To my surprise, I was patched into Taylor herself.

“Hi Maya! How are you?” she said in that sweet darling voice of hers.
“Hi Taylor! I am well, how are you?” as if she was just another one of my everyday friends.

My calmness soon turned to complete and utter frozen shock when these words came out of her mouth.

“I wrote a song for Ronan,” she said. The tears started pouring down my cheeks as soon as I heard her say those words. But her words didn’t stop there. Not only did she write a song for you, but she wanted to know if it would be alright to preform it on the nationally televised Stand Up 2 Cancer show which is on every major network and is seen in over 100 countries. She wanted to know if she could use a picture of you in the background while she sang the song. She wanted to make me co author of the song with her. She talked about how from reading this blog and following our story, has inspired her and how amazing she thinks I am and all I am doing, to bring awareness to childhood cancer. She went on and on about some other things, which I tried to understand and reply to, but I couldn’t focus on a thing besides the fact that she wrote a song, for you. That she hadn’t forgotten about your beautiful blue eyes and our love story. One so powerful that Taylor Swift decided to write a song about it. This cannot be real. But then I remembered, this was you she was talking about. Of course this is real, because you are that beautiful and that amazing and our love is that strong. I don’t even remember what I said to Taylor as had buried my head into your blanket that I take with me everywhere and all I could pretty much do was cry and tell her thank you. How do you even find the words to thank somebody for something like this? I was a blubbering mess telling her how much this meant to me as she was helping me keep your memory alive and helping me to do amazing things. How if I had to pick my dream person to be tied to your name, it would be her because she is full of so much pure goodness, just like you.

I got off the phone and I was shaking, crying, and could not even form a thought. I called your daddy. He was so quiet after I told him the news. I yelled at him in the phone, “Are you there? Why are you so quiet?” He said he was so quiet because he was crying. He couldn’t believe what had just happened.

My day was shot after that. I picked your brothers up and let them listen to the voicemail from Taylor. They were both smiling but couldn’t wait to tell me about who got hit in the face with a football at recess. I had to act like that story was half as exciting as the one I had just told them. Good thing my acting skills are becoming better. Yeah, football story… just as awesome as my Taylor Swift story. You gotta love 9 year old boys, right:)

I have been thinking about this all day long. I am not proud of myself very much anymore because you died and that just ruins any sort of goodness that I am able to feel most of the time. Because of the whole, I was your mama, I promised you I would get you better, and I didn’t. To me, that is still unforgivable. I know your cancer was out of my hands, Ro, but you know it destroys me that I broke my promise to you. Today, I let myself be a little proud. Do you know why? It’s because of that whole following my heart thing. When Taylor invited me to her concert last year and I had the chance to spend a little time with her, I just knew she was going to do something amazing, on her terms and her time. I had so many people trying to push me and saying, “You need to reach out to Taylor Swift. See if she can help you get X,Y, and Z done for Ronan’s Foundation. See if she will donate this or that or do this or that.” I just responded with, “No thank you. I’m not going to do that.” People looked at me as if I were crazy, but asking something of Taylor, just felt wrong. I always kept it to myself why it was that I was not going to reach out to this very generous girl, who out of the kindness of her heart, invited me to her concert, only to take to time to talk about you, with me. To me, that was enough. I was so thankful just to hear her say your name out loud. That was so much more then I could have ever asked for. I always went back to, if Taylor does something for Ronan, it will be something completely organic and natural, not because she felt pressured or forced to. Not because I asked her to. I didn’t ask, Ronan. I sat back and just let the world work in the way which I have always known it would… because it was meant to be. Because I feel the best things that happen in the world, just happen naturally, when they are supposed to and when the universe comes together. I mean, I get the news that I am pregnant only to find out about a week later, that Taylor Swift wrote a song just for you?? That is you working your magic in a way that I cannot even wrap my head around. It’s been so long since I’ve had so much good come our way that I don’t even know what to do with it all.

It’s been 5 days since I got the Taylor call. I’m having to keep this hush hush for now which I totally understand. I am still in complete and utter shock at this point. The timing of all of this is really unbelievable. How the stars and the universe are just aligning at just the right time. How everything that I knew would happen, is just falling into place, naturally. The way that I always trusted in myself and you, to make this all happen. If you had to die Ronan, and I have to live on this earth without you… you can be damn sure, I am going to make something amazing come out of it. This is by far, the most amazing thing that I could ever have imagined… times 1,000,000,0000. I could not have dreamed up any of this happening, in my head. How that girl, with the most sparkling blue eyes, that remind me so much of you… is about to finally give a face and a voice to childhood cancer that it needs so desperately. Now, people will want to pay attention. Now, maybe childhood cancer will get the awareness/funding/and attention that it deserves. Now, maybe less children will die in the future due to somebody huge, stepping up and caring. Taylor Swift, just changed the face of this disease and all I can do is sit here and sob about it. But I am sobbing in a way that I never sob anymore. Because I am so unbelievably happy, Ronan. This is all because of you and our love story. One that will live on forever and do such good things in this world. All with the help of an amazing girl who just happens to be named, Taylor Swift. She could have done this for anybody, Ronan. Anybody. But she didn’t. She did this for you and for us. Because she knows and believes in us so much, that she is giving us the biggest gift that we could have ever received. The gift of an eternal love story between a mother and a child. One that will never end. One that will keep on living forever and soon the entire world is going to know about the most beautiful little boy, who changed the lives of so many because of the love he had for the short life that he lived on this earth.

I love you to the moon and back my spicy monkey boy. Thank you for all you are doing. Thank you, Taylor for this gift you have given us. I promise to make you both proud of all the goodness that is going to come.

I miss you, Ronan. I miss you, I love you and I hope you are safe.

xoxo

Tomorrow, we dance.

Ronan. Tonight, I am left speechless with all the things you are doing. Let’s just say it was a day full of shock, tears, screaming, hugging, and silence to process all that has been happening. There are no words to describe all the beauty that you are leaving behind.

Tomorrow, would have been your little buddy, Ezra’s fourth birthday had Neuroblastoma not killed him. Tomorrow, his mama should be throwing a party, not wiping away her tears over her son that she misses so much. We’ve been texting back and forth a bit today. I asked her what she will do tomorrow. She said, “Tomorrow, I will dance.” Erza loved to dance, just like you. You two sound so similar.

I’m going to ask a favor of all you little lovely readers tonight. Tomorrow, please stop and take the time to be thankful for all that you have, and dance while doing so. For Ezra.

This is all I can write tonight as it was a super long day in the best way possible. Probably the best day I have had in such a long time. Thank you, Ronan for your soul which is changing this world. I’ll dance for you tomorrow, to one of your favorites… Kelis….”My milkshake brings all the boys to the yard.” Or Kanye, ” Can’t tell me nothing.” And of course a little Taylor Swift, too.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

“Hello, Poppy!” (only to be said in a British accent) Thank you, Ro, for bringing us all this gift. I miss you so much. You are going to make the best big brother. xoxo

An L.A. Adventure

Ronan. Hi. Where are you? How are you not here, snuggling with me? Somedays, I can hang out in your room and not even cry. I then think to myself, what is wrong with you? How can you be in here, and not have a full on breakdown? The love of your life is dead and he is never coming back. You are in his room with all of his things and you can sit in here, and be alright with this? Is life moving on for you, too? The way is has for everyone else? Somedays it feels this way and it is like nails on chalkboard. I don’t want my life to move on. I don’t want my life to be alright without you. That to me is so wrong. But what choice do I have? I have to have alright days once in a while in order to survive this, right? I deserve to have alright days, too. I still hate them, but I manage to get through them. Somedays I even laugh and smile. Not often, but I don’t seem to cry as much anymore. I used to cry, every single day, 10 times a day. Now the crying is less. It is not because I miss you any less but maybe because I am just so used to this pain, that I am living with it a little better.

Your daddy and I had a trip planned to L.A. this week to go to a fundraiser of some friends of ours. Our week was super busy and your daddy has been slammed at work. I have been so exhausted that I have been trying to keep up with things, but all I can really seem to do, is sleep. Your daddy looked at me on Tuesday night and said, “You sure you’re up for this? The drive to L.A. for this quick trip?” I thought about it for a few minutes. I told him I didn’t care how tired or how much I was throwing up. We were going. That our friends were counting on us and we were not going to let them down. I may have thrown in plus, “Robyn bought all this really cool stuff, to do our nails with.” He looked at me, smiled and said alright. We left Wednesday evening at 9:30 p.m. Your daddy was writing motions at his office up until then. We hopped in  his car and I let him drive us for 4 hours, after he had worked about 40 hours in 3 days. It was around 1 in the morning when he finally looked at me and said, “It’s 1 a.m. we’ve still got two hours ahead of us. Let’s find a hotel and stay the night.” This was not part of our plan. “No hotel,” I said. “Pull over, I’ll drive.” “Maya, you are pregnant and tired. You are not driving.” I, of course argued with him. “I am totally fine. If I get tired, I promise I’ll tell you.” He pulled over. Into the drivers seat I went, with the music happily blaring. I love long road trips. They always give me a lot of time to think. And think I did.

I got us to Charisma’s house around 3 a.m. I looked at your daddy and said, “Please don’t try to talk me out of doing something, ever again. We are here, safe and sound.” Charisma is away shooting her T.V. show and was sweet enough to let us stay at her place, which just happened to be about 5 minutes away from the venue of the event we were going to. We crashed out pretty hard until 9 a.m. that next day. Dr. Sholler flew into town on the day of the event, that Thursday, and we picked her up at the airport. It’s always a treat to spend time with her. We spend much of the evening, catching up with her and everything that we/she has going on. You know the question I asked her, of course. How could I not?

“You know what I’m going to ask you. What if this baby, has Neuroblastoma as well. I am so scared about that.”

She looked at me in that thoughtful way that she always does. I could literally see her thinking, before speaking, which is something that means so much to me.

“Maya. This baby is not going to have Neuroblastoma. That is unheard of. But I know what you are thinking… that lighting has already struck once. I understand your thought process, but I am telling you, this baby is going to be fine.

I was trying my hardest not to throw my head down on the table and cry. I let myself trust in her words. I cannot believe she never had the chance to meet you are help you. She would have been our best shot at this beast. I know this with all of my heart. That woman has something so different about her, that I will spend the rest of my life supporting her, helping her, and making all of her dreams come true. I know she is going to be the one, to fix this disease. I can feel it in my bones. I believe with my whole heart that she is truly in this, to cure these kids. This is not about money to her. This is not about anything other then her wanting to save these kids. She cares so much. You would not have been just another lab rat to her. You would not have died in the name of research with her. You would not have been just another number and we would not have been tossed out on the streets, to never been checked on again. Fucking assholes.

We went to the event to support our friends. They did an awesome job and I am so proud of them. We are all in this, together. That’s how things will get done. That’s how things will change. It was hard for me to be at this event, I won’t lie. I spent a lot of the night, wiping away the tears. I wished this wasn’t Robyn and Kyle’s story, as much as I wish it wasn’t ours. They are hands down, one of the most amazing couples I’ve ever met in my life. We share a special awful bond that nobody should ever share. They will be our forever friends and you and Ezra, are going to help us do amazing things. I know this, no matter how many people doubt me. No matter how many people tell me, I’m crazy, this can’t be done, it’s too hard. It can be done and it will be done. You fucking died. Kids are fucking dying everyday from childhood cancer. You fought with everything you had to stay here. So, please, tell me again how nothing will change how this world is too hard to fix how nobody will believe in this or trust this or can do this. Tell me that again and I will say to you what I tell myself over and over and over every single day. I have to live every single day without Ronan. If I can do that, I can achieve anything I set my mind to. I know what I am doing. I have a very specific plan and it will get done. I can change this world. It will change. If you knew my son, you would know this, too. I believe in the power of our love. It is the power of our love, that keeps me from doubting anything, Ronan. A love so powerful that the unthinkable can and will be done. I know this in my heart. I know this in my soul. I know this with everything I am.

We drove home Friday just in time to meet some people for dinner at Chelsea’s Kitchen. Some wonderful people who share our same thoughts and visions. Some wonderful people who believe in you and this cause, as much as I do. That’s all I need, Ro. Is people that believe. I spent much of the evening going over our master plan. I spent much of the evening, listening to the advice and help that I so desperately need. I spent much of the evening, feeling thankful for the people that you are putting in our path. I don’t believe in coincidences. This is all you, working away with only the BEST people to help us on this adventure of ours. Thank you for that.

I love you. I miss you. I hope you are safe. G’nite my spicy monkey boy.

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

Maya decides not to die.

Ronan. I saw your Dr. JoRo today. It’s been way too long. It was a catch up session and a pow wow session combined. She wanted to know what’s been going on, if I’ve had quiet time, how I’m feeling, etc….. I told her today that I think I have decided that I’m not going to kill myself. She hardly flinched when I told her this as I think she already knows this. I guess I’ve known this for a while too….. but sometimes I think it would be nice to take the easy way out, so I wouldn’t have to deal with any of this pain. I get tired of it. But then I think of your face and how unfair that would be to you…. not to mention your daddy and brothers. And Dr. JoRo and Sparkly. And a whole lot of other people who love me. I could never be so selfish to actually do something like that. But I do think about it. Not a lot, but it does comes up. I’ll bet you it comes up with any parent who has lost a child. I’ll bet it is just part of this process. It almost seems natural due to being left here, expected to survive such extreme circumstances while everyone else goes on with their day-to-day lives. I won’t ever be able to go back to the day-to-day normal life that existed before all of this. Every single thing I do involves thinking about you, missing you, and hurting for you. Whether it be folding the laundry or how I am plotting to take over this world with my evil plans that often involve the fuck word that I love so much and seems to offend so many people. Bahahahahaha!!! That was my best, evil laugh. Fucking fuck little dude. People are sick and want to see me fail. I fully get that. It’s just the way this world works. I don’t have much to say to that because it’s not really worth my words. I just feel sorry for them and the things in life that they choose to HIDE behind. What a pitiful life. All I’m trying to do here is spread the RoLove and maybe help save some cancer babes lives while I’m at it. But I understand how that could seem so evil as I am not doing this the traditional route. I’m choosing to do this my way or the highway and anybody who has a problem with that can SUCK IT MOTHER FUCKERS!!!!!!!! Traditional is not my style when it comes to, “Oh, I’m sorry, but my son died of cancer so let’s just sit back and be nice about it while I shut the fuck up and don’t be vocal about it so things don’t ever change.” Gag me.

People are scared of different. They would rather sit back and judge and hide instead. Uhhhh…… hate to break it to ya, but nobody normal, ever really changed the world. It’s always the rule breakers, the outside of the box thinkers, the passionate ones, the one’s who don’t take NO for an answer, the one’s who FIGHT back not slink away, the “crazy,” ones. It’s not the let’s play it safe guys and do everything the same exact way, that everyone else is doing, or let’s just not do anything at all. That won’t change a thing. I’m not here to follow anyone’s else’s lead, unless you are a rule breaker too, then we can talk. I’m here to listen. I’m here to be inspired. I’m here to watch the way some other very inspiring people are doing things differently in life. I’m here to grab onto the hands of the people who are willing to do things differently as well. It will take an army to change things, I know this which is why I am sitting back and quietly observing a lot. It’s as if I’m seeing a whole new world of people out there. They are so beautiful that it’s blinding. In a good way. It’s feels so good to be blinded by the sparkling lights of the human soul.

Do you wanna know one of the sparkling lights that I am blinded by every single day? So much so that she is in my daily thoughts because I love her that much. My Dr. JoRo. In my dream of all dreams, and I have many, she is in each one of them. I would walk through fire for her. If money were no object, I would give childhood cancer funding and her MISS Foundation, everything I had. The fact that she has to work so hard, for the funding she gets, which is not a lot for all she does, is such bullshit. Everyone should be supporting her. She is saving the lives of all these parents in the world who are just tossed out into the streets, so scared and vulnerable. She is fighting the good fight and how in the world isn’t EVERYBODY supporting her? She is not doing this to make money or line her pockets like so many other organizations out there. Ummm, hello…. Dr. JoRo does not even take a salary from the MISS Foundation. She is THAT kind of a human being. She is an anomaly in this world. She could give a flying fuck about making money for herself. She wants to help others and that’s it. There is no hidden agenda. What you see is what you get and what you get. And what you get is one of the SMARTEST, KINDEST, PASSIONATE and BADASS souls that I swear to you Ro, has ever existed. She is my Gandhi. I need you to watch over her. I need her to be here with me for a very long time because we have a lot of work to do, together. I know Chey is watching over everything she does so she really is in the best hands possible; but I know you are helping out now too. I know you are the one who led me to her. Yes, I got your little sign. The JoRo sign. It’s not a coincidence that her middle name is ROse, baby. I know that. Thank you.

I not only go into Dr. JoRo’s office to talk about death, grief and all things painful. We also talk a lot about life things, which was probably one of her biggest clues that I had decided not to off myself. I guess when you are talking about the future, it means you are less likely to kill yourself. At least in my case. I’m not the grief expert or anything, but this would seem to make sense. Today, I went in there and we discussed an email I had shared with her that I had written out. Today, I went in there with “I have an idea. A really, really big idea….” I have a lot of these ideas in my head that I am so excited about, I want to scream them from the rooftops and go jumping right in, but I understand it is easier said then done. In my mind, everyone should just hear my ideas and say, “Yes! You are a genius! Here is your 100 million dollars! Let’s start saving all these cancer babes!” Dr. JoRo quickly brought me back to reality in the most tender, caring way. By saying, “I absolutely think you can get this done, but let’s cross off X,Y, and Z to get there first and I will help you. This has to be a really well, thought out plan. So, let’s sit down with this dream of yours and figure out what it is we need to do, to make it happen.”

I like a plan. A plan says your serious. And I am serious in the most serious way possible; with everything I have. With everything that is you. But I understand there has to be logic, rules and structure in place as well. I can play by the rules with some things, but I will keep it extra spicy for you too of course just to put your little spin on things. Lots of big dreams all inspired by you and all the other kids and families we’ve been touched by. Cancer peeps and non cancer peeps. It’s amazing to see the movement you are creating.

There is no dream that is big enough for you, Ronan. I promise you that. I promise you, we will get this done. This is what you want. I know it. I love you. I miss you. I hope you are safe. I’m going to try to get some sleep. My new motto is, “I’ll sleep when I’m dead.” I said this to your favorite lovie the other night. He didn’t laugh. He didn’t like it. He thinks I need my sleep. I will try to listen to that voice of reason of his that seems to be the one I listen to. And yours. Although, I feel like yours is always pushing me not to listen and to break the rules. You are so spicy. G’nite baby doll. I love you to the moon and back. G’nite little RoFriends. You are the best for believing in us and for letting Ro make you better people. I love you.

xoxo