We love our friends at TGen.

tumblr_mjrqfsH5kD1s53xpzo1_500

 

 

This is going to be an awesome event for a great cause. Join them if you can!

http://events.tgen.org/site/TR?fr_id=1110&pg=entry#.UVNuK90_4MM.twitter

 

 

A Rock and Ro Marathon and The Day Dr. Sholler Almost Died

tumblr_mh1ne1Wrod1rp9mt7o1_500

 

 

Ronan. This was another whirlwind of a weekend. So much so that my body/mind hit a wall today and I almost passed out at the dentist’s office where I had to take Quinn to get his first filling. I have never been through a pregnancy where I have been this busy. I have never felt the level of exhaustion that I am feeling. We made it through Quinn’s dentist appointment and I got us home and went straight to bed for the rest of the day. As much as I didn’t want to do this… I also do not want to go into labor anytime soon so I made myself listen to my body and your Poppy sister. My body is acting like it is pissed off at me and screaming at me to slow down. Ugh. I do not do well with slowing down.

I spent the weekend gearing up for all things marathon. Dr. Sholler was in town so much of the weekend was spent with her which you know I loved. I had the chance to introduce her to Dr. Jo. One of the highlights of my life! Getting to spend time with the two of them, together was really amazing. They both deserve the noble peace prize as they are two woman who are doing extraordinary things in the world. We had a nice dinner at Chelsea’s Kitchen, your favorite restaurant. You had the best taste for a 3-year-old. I miss taking you there, so much. After our dinner we had to run over to California Pizza Kitchen as they hosted our “Carb Load,” night before the race. So awesome of them to do. I had the chance to meet many of the people who came in from out-of-town to run for you. It was so amazing to hear where everyone was from. I met people from all over and could not get over how many out-of-town runners we had. You are inspiring so many people, Ronan and it really is amazing to see.

The next morning, I got up super early to head down to the race. We had a booth set up at the end of the race and I wanted to be there to tell our runners thank you despite how tired I felt. I am so glad I went and spent the day and was able to meet some of your RoLovies who ran for you. I had a family who decided to skip their trip to Disneyland this year so the dad could come and run the full marathon for you, Ronan. Can you believe that?! They had 3 kids, and they skipped Disneyland this year because running for you meant so much to them. I don’t even have words for that, only tears. I had one girl who ran with your pictures on her back. Oh.My.God. I really tried my hardest not to cry about this, but it was no use. I was bawling. She was bawling. Becca was bawling. Stacy was bawling. Melissa, too. Our rad junior board, was also in a hot mess of tears. (Hi! Yes, we have a junior board now. It’s not official or anything yet, but they are LEGIT. Thank you girls for all your help) Dr. Trent from TGen ran for you, Ronan. I adore that man. I was so excited for him to be doing something so wonderful for you. Dr. Sholler had a great time running for you. I know I say this over and over and over, but I cannot even explain how amazing she is. I wish so much that she would have known you. I’m trying not to play that little game in my head that I often do called, “Ronan would still be here if…” If Dr. Sholler had taken care of you. I don’t know if this is true. I hate the fact that I will never know. What I can do is work with her, support her, tell everyone I know about her, so that I can help her do the only thing she wants to do which is save kids lives who are here now. As Dr. Trent put it on the night we all had dinner together, “Many people talk the talk, but do not walk the walk. Giselle walks the walk like I’ve never seen anyone before. And she gets beaten up for it sometimes. She is a pioneer.” She is indeed a badass pioneer who will change the face of this ugly disease. And she will do it in a way where you know she is not just another mad scientist playing God. She truly cares about the patients she is taking care of, as much as her work if not more.

We might be the first foundation to have almost killed our dream doctor, by the way. I was not a part of this, but between my two board members, Stacy, Melissa, and Dr. Sholler, they had quite a story for me. After the race, Dr. Sholler needed to get back to her hotel. I could not take her as I didn’t have a car and was still needing to stay at the event to tell some people thank you. I put the precious life of Dr. Sholler in the hands of my two very responsible friends and board members. The walk back to the car was long and one of those rickshaw bicycle guys was peddling around. The 3 of them decided to hop in so they wouldn’t have to walk so far to the car. Rickshaw bike ride gone bad! From the story I got a traffic light turned red in a major intersection and the bike guy decided not to stop, but to speed up! I know all 3 of them saw their lives flash in front of their eyes and Dr. Sholler was almost thrown from the bike. I about died when I heard this story. I cannot imagine if something would have actually happened. Stacy has decided we need a reality camera to follow us around at all times due to stuff like this always happening. It is so true. Even at our most serious times, funny things seem to always be surrounding us. I tell myself a lot that it is your way of reminding us not to forget to laugh once in a while even though what we are doing is for a very sad reason. You know we need a lot of laughter to help us through this, otherwise it would be a constant stream of tears. I am very thankful that we can look back and laugh at the little Rickshaw bike ride and nobody ended up being roadkill. Geez. Thank you, Ro!

I had a dream about you the other night. You were sick but instead of cancer, you had some gashing wound on your head. I didn’t care. I was just walking about the hospital, talking to your Mr. Sparkly Eyes all calmly like nothing was the matter. I, of course knew you were dying, but I was just thankful to have you in my arms. As soon as I woke up from that one, I fell back asleep and dreamed of your Poppy sister. Your Sparkly was in this one too. It seems to be a pattern whenever my dreams involve you, he is always there. In my Poppy dream, she was about 3 or 4 and looked so much like you. Your Mr. Sparkly Eyes was chasing her about and they were both laughing. Her little face looked so much like you. I woke up from that dream, smiling. I can’t wait to see this in real life. Your Sparkly is just as excited for your baby sister as I am. A lady passed us the other day, carrying a infant carrier and he just looked at me and said, “I can’t wait for that to be you.” I know why. He knows how much I need your sister. He knows I need to smile more and he knows she is going to help so much with this. He is right. As always.

Alright little man. I’m going to end this before your brothers get home. I miss you. I love you. I hope you are safe.

xoxo

P.S. Dear Rock and Ro Marathon Runners, Donators, and Helpers,

Thank you. Truly. What an amazing thing it is to see the way Ronan has impacted your lives. So much so that you are letting him make you the most beautiful, selfless souls that exist. Thank you for believing in him so much that you have allowed your lives to be changed, for the better. It is one of the most beautiful gifts that he has left. I am so thankful and honored for all of you. I can’t wait to see you all next year and run the race with you.

Magic Meg. You forking rock. This was all you. Thank you for taking over and making this marathon such a huge success. This would not have happened without all of your badass hard work. Ronan thanks you, too. I love you.

P.P.S. We are accepting donations until January 31st so feel free to keep them rolling in! Thank you all.

xoxo

http://www.firstgiving.com/fundraiser/rockandro/rockstar-run

Blessings to you all! Best Ro-Lovies EVER!

tumblr_mfj37fRo0C1rvbnyoo1_500

Happiest tears ever! You all just helped me meet my fundraising goal in about 15 minutes. I don’t even have words! Thank you so much! You all inspire me and give me so much strength. The next thing we fund will be for Dr. Giselle Sholler. I am so excited to give her this news as we are hoping to do something for her very soon. Please keep the donations coming in as there is no cap to what can be raised. $1000.00 dollars was the minimum.

Thank you all so much!

xoxo

http://www.firstgiving.com/fundraiser/rockandro/rockstar-run

I have a surrogate runner!!! Dr. Giselle Sholler is in da house!

tumblr_mfknloURyG1qct4zgo1_500

 

I will cry watching Dr. Sholler run this for me. She is beyond amazeballs. A doctor like this is unheard of. I am so honored to have her run in my place.

http://www.firstgiving.com/fundraiser/rockandro/rockstar-run

Join the Fight against Pediatric Cancer! Watch this video and Dell will donate $1 to Pediatric Cancer Research

Please watch and spread the word. Dell is doing great things. You don’t have to spend any money, just by watching this video, Dell will donate a dollar every time it is watched. Thank you all so much.

 

Side note*** I just had someone comment that they heard this video was a scam. I can promise you, it is not. I am very careful about the things I support. Dr. Giselle Sholler emailed me herself and asked me to share this video, which is why I posted it. She is very involved with Dell and would know if this were a scam. I promise I do my research on the things I post. I promise I trust her. This is legit. Thank you for bringing this to my attention. There are a lot of things out there, that are just not worth our time. This is not one of them.

http://www.causes.com/causes/789392-powering-the-possible/actions/1672930

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

May the odds be ever in your favor

Ronan. I’m in route back to Phoenix. I spent the afternoon with Dr. Sholler. I came here for a very specific reason. I am leaving here with the answers I wanted. I am leaving here with clearer vision of my plan. I am leaving here feeling strong, motivated, and ready to kick some ass. I have no doubt everything that I am going to do, is going to get done. I know what I am doing is a very big job. But there is no job too big when it comes to saving the lives of these kids who are fighting this awful disease. It’s the freaking least I can do. They are the one’s doing the really, really hard work. The least I can do is make it easier for them and a little less scary. The least I can do is give back to this world that I love so much now. The only world that I seem to flourish in and love. I don’t belong in any other world anymore. This is my world. I’m not running away and going back to the pretend world that I know I could have if I wanted it. The one full of pretend dinners, pretend problems, pretend complaints. Everything in life is fixable when you have your health and everyone in your family is alive and well. I don’t live in that kind of world anymore. I cannot go back to it and abandon all of this. That would kill me. This I know. This life without you is hard, Ronan. But I can live in it by trying to fix all I the problems that I see. I can live in by trying to help others going through this. I can live in it by pouring everything I have left of myself into it so I can live a new life now. This is the life I want. This is the life that I will fight for. I will make this world better for others going through it. I have people say to me all the time, “Isn’t it hard for you to be around this?” “Isn’t it hard for you to be at the hospital?” “It must be hard for you to still be a part of this world.” I usually just reply that it is not hard. That is the only world I feel like I belong in. I don’t know how to explain it. I must be crazy, right?? Maybe. But crazy feels good to me.

I know I have met my match with Dr. Sholler. I seem a lot of similarities between us. She cares about her families so much. She thinks outside the box. She’s a rule breaker. She doesn’t like the word, “No.” She refuses to accept it. She is looking at this disease in a way that most people have been too scared to do so. She knows things have to change and is here, to change them. I am here to help her in any way that I can. She is a dream for these kids fighting this disease. I am beyond sad that we did not find out about her sooner. Of course, I think she would have saved you because that is the mama in me talking. The mama in me that will forever constantly beat myself up for not saving you. I know how hard your daddy and I fought for you. I know how much we educated ourselves. But at the end of the day, it was not enough. At the end of the day, this is my fault. Will I cry the rest of my life because I believe this? Yes. But it will also be the reason that I fight for the rest of my life, too. Because I know I will make this better for the others out there who will walk this path next. Unfortunately, there is not a shortage of kids’ getting this disease. I swear I am hearing about more and more of them, everyday. I know I cannot stop the diagnoses of the kids that get this disease. But the odds of survival, need to be in their favor. Not against them. Why is this acceptable in this day and age? Who would ever stack the odds against a helpless group of kids? Greedy people, that’s who. Hello big pharma. Thank you for killing my child. I’m not going to go there tonight. I’m too tired and I have too many other things to fight for, right now. Someday, I will take them on. But not now. That is way too big of a fight for me to take on at the moment. That problem is too out of my hands. I’ve got to handle the things that I feel I can help change, now. Not 20 years from now.
This is hard for me. I don’t like not talking about all of my 50 million ideas. I don’t like not being able to write about what it is, I am working on when all I want to do is scream it from the rooftops. I promise, very soon I will do this, but not now. Right now, I have to sit in a time out, in a corner, and just be with all of this. I will know when the time is right. I don’t feel like I am there yet. Thank you all for being patient with me. Thank you all for believing in me and waiting this out with me. I promise you, it will be worth the wait.
Be thankful for the life you have. Please. Do you all know how lucky you are, that you are just readers? I would give anything to be just a reader and not the one living this freaking never-ending nightmare. I miss my Ronan so very much. The missing him does not become less as time goes on. The pain from not having him does not lessen as time goes on. It only becomes deeper and harder. I wish people would stop acting like I am doing better. Like I have just recovered from the death of my imaginary dog or something. I will NEVER recover from this. I will NEVER get better. I will change. I will grow. I will learn how to survive in HELL. I will learn how to fight harder just to breathe, eat, sleep, laugh, love, and go on. I make a choice everyday to walk on this earth. It is not a given right to me anymore. It is a choice that I decide every single day to do. It is painful, scary, sad, and lonely. But what kind of mama would I be, if I didn’t risk it all, for my child? For you, Ronan, I will risk it all for as long as you decide to keep me here. My life is yours. Your life is mine. I will live them both, for the two of us.
I’m home Ro. I hiked the inferno with your Tricia today. It was hot. It felt nice to be with her though. I miss her. She misses me. We both miss you. I missed you the rest of the day something fierce. I laid in your bed for a while tonight. I cried. I’m tired. I’m sad. But most of all, I am sorry.
This is all for tonight, my love. I hope you enjoyed your bedtime story. I love you. Thank you for being with me the past couple of days. I know you know I cannot do this, without you. I love you. Sweet dreams, baby doll. I hope you are safe.
xoxo

Though she be but little, she is fierce!

Ronan. Cancer doesn’t rest so why should I? I know I just got home from California, but I am off again. I’m on a flight as we speak. I’ve had this trip planned for a while now, but I just haven’t brought it up. I’m in route to Grand Rapids, Michigan to visit Dr. Sholler. I have some things I need to talk to her about. Some things that the wheels in my head, won’t stop spinning about. I told you I’m not in this to sit back and do nothing. I am in this to do big things and I have some really big ideas. I will share them when the time is right, but as for now I need to keep them to myself. Until I have this master plan of mine, all mapped out to a tee. I’ve been working non-stop on this plan of mine which is actually really all of yours. Everything I do is for you, fueled by you, and motivated by you. I don’t want any of the credit for this is not my plan, it is yours. I truly believe this. This is just the way this has to be. Go big or go fucking home, right? Without a doubt.

I have felt alright the past few days. It was actually o.k. coming home. I missed AZ. I missed our house. I missed my friends, although I didn’t really have time to see anyone. I had time to get unpacked, laundry done, repacked, errands ran, your brothers situated, and off I went to the airport. I am excited for the next few days here. I already have a good feeling about this trip. Although you know I would give anything to not having to do any of this at all. I would give anything to be back at home, taking care of you. That’s all I really ever wanted in life, was to be a mom to you and your brothers. I was so happy doing this. I would like to say a big fuck you tonight to the dickwad, who decided to turn my life upside down, in the worst way possible. I would also like to give a big fuck you to the person in front of me who has been slamming his seat into my legs for the past 3 hours. He’s about to taste the back of me hand. Kidding. Kind of.
I don’t have a ton to say tonight. I think I might have been in a not so good mood today. I think I found myself being bitter and mad at all that I am doing, in the name of my dead child. I close my eyes a lot when I think about this. I see your beautiful face and my heart and stomach both drop to the floor. I stop breathing sometimes during all of this. I have to remind myself to breathe and focus on what it is that I will do, because of you. I sit back and try to block out all the noise that exists in my world now. I sit back and I picture a long dark tunnel with a light at the end. I tell myself not to look sideways. I tell myself not to get distracted. I tell myself I will see you, once I get to the end of this very dark tunnel. You are the light at the end, that will be waiting for me. This takes discipline, self-control and patience. I can do this. I remind myself all the time how brave you were, though out this entire fucking fucked-up journey. How much you loved me. You know what kills me the most, Ronan? That you loved me so much, that you never doubted that I was going to get you better and save you. You trusted me so much that you getting better was never even a question in your mind. I failed you no matter what anyone says. I did. I don’t care how out of my hands this was, I still failed you and let you down. This is why I know I will not fail at this. I will make this up to you in the only way that I can, as of now. I think I would like to run another fucking marathon just because I can. Somebody sign me up. I’m pissed and I seem to take out my anger best when it comes in the form of doing something physical. Can somebody find me something harder to do? I mean, do you know how hard it is to live everyday without you? Anything else this fucking world throws my way just seems easy.
Ro baby. I am here now. I spent the entire day with Dr. Sholler and we had dinner as well. You know who else is the light at the end of this very dark tunnel? She is. She will change the face of this disease. Mark my words. I’ve never believed in someone as much as you, until now. As we were sitting talking tonight, it was all I could do to contain my tears. Tears of happiness, tears of sadness, tears of regret, tears of all things bittersweet. I wish I could talk more about all the things going on. It’s hard for me to write on here, but not really be able to write. I’ve got to wrap my head around a lot of things. A lot of things that are going to change the world. Are you ready for all of this?? I think that you are. I think that it’s time. I’ll never forget the words I whispered to you, right before you passed away. You were fighting so hard to stay on this earth with me. You waited until I told you it was o.k., to stop fighting. My exact words??? “Come on baby doll. Come with me. Let’s get outta this place.” Your heart stopped right after I said those words to you. You had to go to your other place. You were so brave, to listen to me. I wonder all the time if you were scared. I go back and forth with this a lot. I think you knew it was your time to go to your other place, but I know you were still holding my hand, refusing to let go. I know you are still with me, helping me do all of this. I know I could not do any of this, without you. I love you so much. Thank you for giving me the strength I need, when I need it most. I’m going to try to get some rest now. It’s late and I have a lot to do tomorrow here in this sweet little town with the most badass doctor, that ever existed. I brought her a gift today. One of our little F U Cancer shirts. Her reaction was priceless. She loved it, to say the least;) Lots of things to come, I promise you that.
Look what your lovie, Charisma did for you. She is rocking the red carpet, with one of your little bracelets. She is so beautiful on the inside and out. We are so lucky to have her love. I know she is going to help us change this awful world as well. Thanks, Charisma… for truly caring about my little boy, our family, and wanting to help these other kids, who are fighting this awful fight and who deserve a voice to help them. I love you.
G’nite, Ro. Sweet dreams. I miss you. I love you. I hope you are safe.
xoxo

Texas and a Rockstar

Ronan. I am home from Texas. I am beat from all of our traveling and feel like I could sleep for a week. I went there for one reason and one reason only. I ended up leaving there being reminded of why I choose to do this. Of why I choose to continue this and not to give up. Because this is a choice that you have made for me and nobody else. I will forever listen to you. I had the chance to meet many other parents who are fighting this fight. Some of their kids have passed away. Some of their kids are still fighting and fighting hard. Nobody is giving up. If anything, these parents are fighting even harder for what was taken from them. Whether it be their child’s life or their child’s health. Nobody is going anywhere. None of these parents are giving up until childhood cancer starts getting the attention it deserves and until a cure for Neuroblastoma is found. No parent should have to endure what we have all had to endure. No child should have to fight childhood cancer, the way you did or the way these kids did or are. It’s not right. It’s not fair. And time is not on anybody’s side. The wheel of treating childhood cancer is a very slow moving wheel and if it continues to stay this way, nothing will change. This is not acceptable.

I was able to spend some time with the person I consider to be my ultimate Rockstar; besides you. I spent some time with Dr. Giselle Sholler. I’ve met her before, but this time I had the chance to spend some real quality time with her. She just might be one of the most amazing human beings put on this planet. And I’m not exaggerating. Not only is she a bloody genius, but she is so personable, normal and funny… all which blew my mind. We talked about a lot of things. Neuroblastoma things. You things. Yoga things. Surfing things. Family things. Disappointment things. Ultimate dream things. We share a lot of the same dreams. We laughed a lot. I was my bravest and strongest when talking about you and what it is that I want to see done. My ultimate dream. I did not cry. I held it together and gathered all of my strength and did not crumble. I was strong for you. I was strong for me. I was strong for the both of us. I think I did alright. Everything I am doing, is for you. You would not want this cancer world to be this way for anymore kids. You would not want this cancer world to be this way for anymore families. We went through enough. We went through way too much. We should not have been so alone, scared, broken, and left to fend and fight for every single thing, the way we had to. You know we can fix this and make this better. I will fix this for you because this is what you would want. I will fix this for you, because I can. I will fix this and make this world less scary and more HOPEFUL. (that was for you, Rita.) Hope. The word that seems lost on me but slowly it is starting to make its way back into my life a bit. It’s hard to believe in hope when all your hope was stolen away from you. I will never love that word again, but I am trying not to vomit every time I hear it. I had so much hope for you, little one. This is certainly not how I hoped this would end up. Which is why this is not the end. I will continue to go on because stopping now, would be unacceptable. I won’t let you down, Ronan.

I have been sleeping. Like really sleeping. Falling asleep easily at night and staying that way. No Ambien needed. I don’t know why I go through spurts of this but I just do. I still have moments all the time where I’m just about to fall asleep and I drift off, thinking of you. Just as I am about to fall asleep, I’ll have a vision of you dying and I am jolted out of my sleep, feeling like I have been stabbed and cannot breathe. Things like this happen to me all the time. I am sure it will always be this way. How could it not be? I came home from Texas feeling better than I have felt in a while. All that flew out the window as soon as I walked into our house. It’s hard for me to be here, without you. It brings your daddy comfort and peace. Our house, does not do this for me. Our house fills me with a sadness that never seems to lift. I think it slowly might be killing me. But I will find a way to manage this sadness as I am not about to uproot our family from this place that everyone else, seems to find comfort in. Especially your brothers. I think leaving here, the place where they seem to only have happy memories of you, would be really hard on them. I’d rather have it be hard on me, than them. So I will just continue to do what I am doing which is spend as little time here as possible, during the day when I am alone. And when I am here with your brothers and daddy, I will try to focus on their happiness, giggles, and laughter. Or I will sometimes give myself a break and pull the sheets over my head for an hour or so like I did today. I felt tired today for no reason other than I think I was just tired of missing you.

I was a good mom, today. I went with your daddy, Uncle Jay, Charlene, Liam and Quinn, to breakfast. They all rode their bikes. I ran. I ran beside Liam and picked him up when he fell. A fall that happened so hard and so fast, that I ended up falling on top of him as I was running really closely behind him. He was o.k., just scared. He still is not a big fan of the whole bike riding thing. Quinn does it so effortlessly. Liam does not. He is still wobbly and unsure of himself. Our bike rides always kill me because they remind me of how much you loved to ride your bike. How much time the two of us spent, practicing and how proud you were of your bike riding skills. You would have totally had your training wheels off by now. You would have ridden circles around Liam. I cannot believe you are not here, to do this with us. Bike rides will never be the same for me again which is maybe why I chose to run. Either that or maybe because I have a little 26.2 miles to run in less than 2 weeks. Errrr…. I’m not sure how I’m going to pull this one off. I might be getting a little nervous for it only because I remember how hard I trained when I ran my one and only full marathon in NYC. I trained like crazy and I still thought it was the hardest thing I had ever done in my life. I have not trained a lick for this one. I guess I feel like I am running a marathon, everyday of my life now. That is how much having you gone, hurts. Nothing can be as hard as losing you, right? I think I’ll run this thing numb while pouring all of my anger/hurt/heart and soul into it. Those things alone should get me through it. Those things and knowing that I am doing this for you and all of those other kids who will never get to run a marathon because they were cheated out of life. If I don’t die doing this, I think I might be kind of awesome for doing this. I think it might be something that will make me smile. 26.2 here I come!!

I spent the rest of this Sunday, being productive. I have a board meeting tomorrow night so I met up with my secret board member (Becca) and my other awesome secret board member (thiscrazychickwhoskydivessolo) to go over some things. We sat around and to updated some things on your foundation website and hashed out some other details about some things going on. I had a breakdown in the middle of a parking lot due to a phone call that I had in my car. I was thankful for the friend that was there to give me a hug when I needed it. It’s not always good to be alone in dealing with this. Sometimes a hug, an ear to listen, and a shoulder to cry on, help. I was thankful for that Rita today, as I am every single day. How did you know, I needed her so much when I wasn’t even aware that I needed her so much? I don’t know where I would be without her and that is the Rohonest truth. I am lucky to have her.

Your brothers are sleeping. Your daddy is out for a bit seeing some friends. I am tired and have a lot to do this week. I need to get some shut eye. I love you. I miss you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

Alright little one. I love you. I miss you. I hope you are safe. Sweet dreams. I love you to the moon and back.

xoxo