Tag: Baseball games

30 day challenge of mother fucking madness

 

Ronan. The 30 day yoga challenge. I have a friend who is crazy enough and actually did this. Kudos to D. She is crazy in all the best ways. And she loves her yoga. I do not love yoga. I am quite sure, if I were to try to contain myself in a calming, peaceful environment of yoga, that I would go all turrets on their asses and start freaking out/screaming/crying/puking about how I have a fucking dead kid so NOTHING is Zen, NOTHING is Ommmm and I would like to beat the bloody hell out of the Chakras that surround me. I’m pretty sure I would get kicked out of a yoga class, while offending everyone which does sound pretty badass and dangerous… so it’s a little tempting. If I didn’t respect the whole yoga thing so much, I would totally do this. But I secretly love yoga. I’m envious of those who do it, love it, and are better people because of it. I used to love it, Ronan. Before all of this. Now… I’m just not ready to go back.

I’ve come up with my own 30 day challenge, instead. I started it on Monday. It’s called Maya’s 30 day challenge of mother fucking madness. And the weather is getting hotter, which makes it even better. I spent 3 hours on Monday and 3 hours today, hiking/running/puking/crying/spitting/tripping/getting a rad tan. Skin cancer here I come!!!! I’ve decided to have 30 days of hiking for 3-5 hours a day in complete and total silence. I’ve already told your daddy, that it’s 30 days of solitude. 30 days of not talking to anyone because I’m really on a retreat to Italy/India/Indonesia like that Elizabeth Gilbert wah wah wah, my life is so bad, chick. When in reality, your life is freaking awesome lady. Plus, you got to travel to all of those places, solo, and figure your shit out. Unfortunately, I cannot do that, due to having a thing back here called 2 babes to take care of and a husband. This is my modified version of your little trip, Elizabeth Gilbert or whatever your name is. I think I totally have a one up on you though, due to having a dead kid, so kudos’ for that! One of those little silver linings in life that just makes everything o.k.! I am being sarcastic. Because I am in a pissy/sarcastic mood.

So, I started this on Monday and so far, I have not died. I have visions of dying out there though due to the heat/rattlesnakes/weird scary men that appear out of nowhere! when I am in the middle of nowhere!, alone! Rita! I freaking told you I needed a machete! You are going to be really upset if I get attacked and have nothing on me, to protect myself! I have many reasons as to why I am doing this. One being because if I don’t, I quite simply will stay barricaded up in my house, in my bed, crying. Two being because I need to be with you, Ronan. And being alone, hiking is where I feel closest to you. Three being I need the quietness in my head, or to deal with the screaming in my head by talking to Inferno Fuckwad Bob, alone. My head feels foggy. It feels less foggy when I am out, being active and dealing with this grief but in my way, the solitude way. Isolation. 30 days of intense hiking/isolation/how the fuck am I going to get through this? You’d better start figuring this out. You’d better start taking some control of some things. You’d better start because Ronan, as you told Dr. JoRo, in her dream…. “I can’t get to my mom, because she’s too angry. Tell her that, please.” She couldn’t tell me that for a while. She just told me that, last week. She has watched me struggle with this anger. I told her I was less angry and just more sad now. She decided that it was the right time, to tell me the last thing that you said to her, in her dream. FUCK. We both figured out when it is that I hide the most. It’s when I’m angry. It’s because to me, anger is shameful. It makes me feel dirty, like I need to take a shower and scrub, scrub, scrub. I’ve never been an angry person. I don’t know how to handle it. I’m pretty sure I have done/said hurtful things while being angry. I don’t want to hurt anyone so when I am feeling super angry, I hide. If I hide, I cannot hurt anyone with the stupid/mean things that may come flying out of my mouth. I’d rather just deal with my anger and take it out on myself, like on a mountain where I can beat myself up. Where I can find moments of quiet. Where I can scream, cry, bloody my knuckles and nobody has to see me. This is what I am doing, every single day until May 2nd. Plus, Dr. JoRo is freaking leaving me for 2 weeks! Um excuse me! If I don’t do this/and she is gone I am going to go bat shit crazy!

So, this is what I’m doing. I have no doubt that I will be up that mountain for hours upon hours for the next 30 days. I don’t know what I am looking for. All I know at this point is I kind of want to die but I also want to kind of stay alive. I’m just leaving it in the hands of the fates at this point. The exercise feels good to me. The not listening to music, feels good to me. The just being with my grief/sadness hurts like hell but it’s not going anywhere. I’m going to go and join it and truly join it, alone. I’m not filling my days with things/lunches/nail parties/all things I need to take a break from. I’m going to fill my days with silence/dirt/nature/barefoot hiking/blisters/cut feet/sunburns/isolation and solitude.

This is my plan. It’s not much but this is what my heart is telling me I need to do if I want to survive this next month that is coming up. Power through April and maybe it will help you to figure out May.

I’m sleepy, Ro. You would be so proud of your brothers tonight and their baseball game. They looked so great and happy. We all miss you so much. Tonight Quinn got blamed for doing something by your daddy that he says he didn’t do. I looked at him and said, “Just blame it on Ronan.” He giggled. We both yelled out, “Ronan did it!” That made us laugh even harder. And then we got sad because you weren’t here to do it, so we snuggled up together and I just held him and we quietly talked about you.

Your Sparkly said it best. Nobody deserves this. But especially not you. Especially not me. Especially not us. I told him it was you I am saddest for. You deserved so much better. You deserved so much more. You were robbed of living the most beautiful life. I am the saddest for you, always. I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

My very own baby unicorn!!! With a rainbow and everything!!! Fucktards beware!!!

 

Ronan. Remember how I said things were going to get worse, before they got better? As if I thought that things would go from bad, but eventually they would not be so bad. I think I was totally wrong. That is not how this grief thing works at all. It is not a roller coaster from down to up, up, up. It’s a roller coaster of all things crazy, inconsistent, and fucked up. There is no constant up. It is a roller coaster of up, down, up, steady, down, up, and a huge drop off the highest point possible all to come plummeting down, not knowing when you will stop falling. You live in terror that you will not stop falling and you wonder how much further down you will go before you just simply cannot take anymore.

I know what I am capable of. I know that when I’m on top of my game, that I can move mountains. I have no doubt in what I am here to do/will do for you. But I also know when I need a break from all of this fighting/busy work/kicking cancers ass 24/7, even in my sleep. I have not really had a break from this since we returned home from San Diego, last August. I know what is right around the corner. I know what Jo has tried to prepare me for. I have listened to everything she has said, but it’s just now that I am actually feeling her words, as they slowly sink in. They are sinking in, in the deepest way possible. They are sinking in with the reality that today, after deciding a few weeks ago, that I would not like to die… today I told myself I had changed my mind. I’m allowed to do that, right? Today, I decided that I would indeed once again, like to die because I’m just plain tired and everything hurts so badly again. I’ve been walking around in a fog that I cannot seem to lift. I have spent the entire week, trying to be mindful of the way I have been feeling and just letting myself feel it. I have not been overdoing anything, but even a trip to get a passport picture taken, feels like a walk to freaking China.

I have spent a lot of time alone. With the exception of being around your brothers/daddy which feels like a lot of work to me once again. I have hiked for hours upon hours during the day. I have refused to eat as my appetite is once again, gone. Insomnia is only relieved by stupid Ambien the past 3 nights. I’m trying not to give in, tonight. I’m listening to the sound of your sweet brothers, sleeping beside me.

I lost/had my iPhone stolen today. I don’t even care. I only care for the fact that I of course feel like it was my fault. In my fucked up head, normal people without dead kids, don’t get their cell phones stolen. In my fucked up head, this only happened to me because I have a dead kid and I cannot think straight. In my fucked up head, this would have never happened to me, if you were still alive. In my fucked up head, I think all these things, are true.

So, iPhone gone and what’s a girl to do? I don’t really know, but I feel like I will go back to hiding out. I feel like I cannot even muster up the energy to pick up the phone for a while. I’m sorry. I feel the need to up plug from everything as I am fizzling out. No Facebook. No writing. No technology. I don’t like feeling this way but I cannot ignore it. I feel really tired but sleep does not come. I’ve been begging for it all week. I feel like I cannot breathe again. I think I felt like this a few months after losing you. I think it got better for a while, but now it is back and it feels worse than I remember it. I think this is just how life will be from now on. 5 steps forward, 10 steps back. Fall down, get back up. You never stop falling down. You wonder how many times you will be able to pick yourself up. You question your strength, your determination, your worthiness. You question every single thing, about yourself. You spend a lot of the day, fighting with the voices in your head. You spend a lot of the day, crying over the mama word, you will never hear again except for on the video that you watch on your computer of you, over and over again.

Ronan. I think I started that a while ago. I’m not even sure when. I guess on Friday. It’s Monday now. I’m not sure what I’ve done. Just being I guess. Hanging out at home a lot. Not picking up the phone. A lot. Hiding from the world. I’ve been trying to pull my self out of this deep, deep place of grief that I can’t seem to shake. I feel sad all the time Ronan, but I can manage it. I can pull myself out of it, but this has been on going for about a week now. I spent some time with Dr. JoRo. It was good, as always, but I think she is even a bit worried. I had her spend some time with Quinn, to talk about you. We sat outside on the patio and she asked him some questions. He laid on my lap and tried to answer them the best he could. The whole thing lasted about 15 minutes before he got bored and ran inside the house. The diagnoses was: a very happy kid who sometimes gets sad over missing you but thinks he has a good life, mom, dad, and twin brother. And he knows he can talk to us anytime about anything. I just looked at Jo and said, “Look. I’m worried. I don’t want to not deal with this now, and for it to come up in 10 years from now and develop into serious issues.” She looked at me and said something like, “He’s happy, Maya. He’s a good kid. You guys are such great parents, just keep keeping the communication open. What you’re doing, is working.” That lessened my worry a bit. It is almost impossible to really worry about your brothers. That actually worries me a bit 😉 They are such good, kind, smart boys. No discipline problems, grades are awesome, they are so into their baseball and doing so well, they are so respectful and loving… I need you here to shake things up a bit, Ro! It’s all too calm, quiet, and sweet. Nobody is rebelling, nobody is being naughty, nobody is causing trouble. I guess I’m going to have to start stirring some things up, huh. I’ll just tell them Ronan told me to do it;) Nobody could argue with that!

I had a bad day on Friday. A really, really, awful, shitty, motherfucking, fucking bad day. Your daddy. The sweetest of all daddies, knew this. He knows better than to come home with flowers for me anymore. He came home with a small plastic baby unicorn instead. He told me I could carry it around with me to stab all the fucktards with in life. Even that, did not make me laugh…that’s how upset I was. I can laugh about it now, which tells me I’m not as sad as I have been. We had a date night on Saturday night too. I basically spent all Friday/Saturday in bed. By the time Saturday night came about, your daddy practically had to rip me out of our bed to go and eat some food with him. I don’t remember much of the car ride because I was being really quiet and I was crying. I remember telling him how I feared for my sanity. That my head was foggy and I was scared. He quietly told me that he did not fear for my sanity. He complimented me on getting all the laundry done/dishes cleaned up. This made me cry harder. Seriously! This is what you are proud of me for? Getting the laundry done/dishes cleaned up! This has got to be a joke! Those are things in my old life, I could do in my sleep. Now it is such a challenge that it is my big accomplishment of the day?! I would have lost it right then and there if he hadn’t brought up your brothers. About how amazing they are. How great their grades are, how great their sports are, how nice and respectful they are. How we couldn’t ask for better boys. I started to cry harder at this. This makes me so sad. They are the nicest boys, so why them? Why did they have to lose you? The 3 of you, together, was absolutely perfect. It was magical. It was our heaven. I get to dinner with your daddy, I sit across from him, and I pick at my food. I can’t eat. Tears are pouring down my cheeks and I feel like I cannot swallow. Your daddy just looks at me and tells me he’s sorry. What more can he say? Nothing. Sorry is the only thing that makes sense. We drive home and I pass out, without Ambien. I sleep for a solid 8 hours. Sunday rolls around and I tried to do productive things. I cleaned out my closet. I cried a little less but not much.

Monday is here now. Monday was o.k. I cried a lot today but my head felt a little less foggy. We took your brothers to go and watch a baseball game that was being played by a school friend of theirs, older twin brothers. It was nice to sit outside with them and their mom. It was nice to try to escape and unwind a bit. Your brothers had a nice time which I always enjoy, seeing. It makes me smile. Tomorrow, I will see Dr. JoRo before she leaves for about 2 weeks. Not freaking out about that at all (totally freaking out). Tomorrow, I plan on seeing Dr. Jo and then going on a very, very long hike. I’ve got to figure some things out and hiking is where I seem to do it best.

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

xoxo

Sometimes it takes the hardest fall, to know where you really stand

Ro baby. I’m back home. In your home where you should be but are not. It was strange to leave NYC without you only to wind up back at our house, without you. Your brothers were sound asleep as it was late when I got in. I went into their room and gave them a million kisses. I was thankful to have them to come home to. I woke up this morning to hearing your brothers get up and in the shower; all by themselves. I didn’t even have to wake them. They are getting so big and responsible. They are so much more responsible than most 8-year-old boys. I guess that comes with the hard lessons they have had to learn. When I came home last night, I saw a laminated poster that Liam had made for school that your daddy had helped him with. It was full of pictures of all things Liam. Along with the things about him such as his favorite place, food, thing to do, etc….. I read the words, “If I had one wish it would be _________. He had filled in the blank with, “unlimited wishes.” I looked at your daddy and I could feel the tears start to sting my eyes. I said to him, “Wait. He didn’t wish for Ronan back? Why wouldn’t he have wished for Ronan back?” Your daddy said he had asked Liam that question too. Liam simply replied that he would wish for that second, after he got his unlimited wishes. For a split second, my heart was broken over Liam’s answer but then I remembered how he is just 8 years old. How I know that he wishes for you back, everyday. But what kid wants to go to school and tell their entire class that they wish that their baby brother, who died of cancer, to come back? What 8-year-old, wants to explain that to their entire class? To me, that was even more heartbreaking. After my split second punch in the gut that I literally felt, it went away quickly and I thought to myself, “What a smart little kid.” I know how badly losing you has scarred your brothers for life. I am watching them, slowly learn how to live without you. And I can tell you everything they do is with 110 percent more effort, fire and passion. They are the best little boys in every way possible. I am so lucky, Ro. I am so proud of them.

I spent today with Dr. JoRo. We talked all about New York and how good it was for me. She is so glad I fought for that trip. I am glad too. I listened to myself tell her things that I never thought I’d hear myself say again like I feel hopeful and inspired. That I feel like I am starting to believe in myself just a bit. She had me fill out a few questionnaires that apparently, I had filled out when I first came to see her. I told her I didn’t remember filling out a thing. I stared at her questionnaire like I was seeing it for the first time. She assured me that I had filled it out before and she watched me as I checked the boxes off one by one, once again. She compared my answers to the one’s I had answered only a few months after losing you. My numbers were really high on her scale as far as PTSD and some other things go. My numbers are a little lower now. She talked about how she would never say I’m getting better because you don’t get better with something like this. But she did tell me I’m learning to cope with things a little more. I’m learning to slowly come back to life, one piece at a time. I guess this is progress. I told her she had given me this test at the wrong time….. straight from coming back from a NYC trip. I told her to give it to me next week, after reality came crashing down again. She laughed and said she would.

I forgot to tell you a totally funny story that happened on my last day in New York. I was out for my Central Park run and I had stopped at mile 4 and sent Katherine some really pretty sunny NYC picture along with some words about how lame this extra safe, Central Park daylight run was. She replied back with something even more clever and brilliant than my smart ass comment. I continued on my extra safe stupid this is not dangerous enough for me run, laughing at her words. I was a few miles back into my run and I guess I was running pretty fast, but I was totally zoned out. All of a sudden, I tripped on something and felt myself go flying through the air. And I’m not talking the kind of flying where you end up on your ass. I’m talking the kind of flying that it’s like you are running to home plate in a baseball game and go sliding in head first to score a run. Oh YEAH. That was totally me. Except I was not on a baseball field. I was on hard, black pavement. I picked myself up quickly and totally just started running again like nothing had happened. My hands, clothes, and body told a different story. My hands and clothes were covered in the black NYC streets, I had blood and asphalt, engraved into my skin, and I could feel the huge bruise on my thigh getting bigger by the second. I finished my run, in fits of giggles though, so wishing somebody would have caught my totally awesome fall on tape. I texted Kath and told her that it turns out, running in Central Park in the middle of the day, CAN be dangerous. I could be on to something here and I have the asphalt tattoos to prove it. I’ve scrubbed for 2 days now and my hands are still black. I told you NYC didn’t want me to leave. Or at least it wanted to send me off back to Phoenix with the reminder that no matter how hard I fall in life, I’m the only one that can pick my sorry little ass back up. Nobody else, Ro. There was nobody there to save me or help me when I fell yesterday. And even if there would have been, my stubborn self would not have taken their hand. Because deep down, I know that it is going to take a lot of falls, bruises and bloodied hands to get through this. I know that I am the only one that is capable of fixing my owies, as you used to call them. You are so worth each and every one or them, Ro. I love you so much.

I’m tired baby. I spent the rest of tonight doing all the things that I should be doing like helping your brothers with their homework and playing football outside with them. I missed you every single second. I love you to the moon and back. I hope you are safe. G’nite, little one. Sweet dreams.

xoxo

The Twilight Zone

Ronan. Can you give me a reason to get out of bed today? Because I cannot find one. I’m still waiting for you to come and wake me up and tell me to make your extra cheesy eggies. I’m still waiting for you to ask me to put on “Mickey Mouse,” for you and sit on the couch and watch it with you. I’m still waiting and until you come back, I don’t know how I am going to function. The truth is, I don’t want to function and I don’t want life to go on. Life for me has completely stopped and that is apparent in the way that each day and night without you drags on and on and on. I’m trying to be productive. I really am, but it’s torture. Last night, I tried my best to be a really good mom to your brothers. They are so sad that the amount of energy I have to pour into being around them and making them happy is exhausting. I will forever be working extra hard to fill your void. That is a lot of work for a mommy. I never realized how much of a helper you were to me with your brothers. You filled them with all the happiness in the world and now that you are gone, I have to try to fill your shoes. It is not an easy job. They had Luca stay the night and Tricia and Macy came over. We piled in the car and took the 3 boys for Fo Yo. The boys giggled the entire way there. You would have loved it. All 3 of them sat in the very back, Macy sat in the seat in front of them and Tricia sat by me in the passenger side of the car. Your seat was empty. I saved it for you. Macy, Tricia and I wore our Spirit Hoods out last night just for you. It was silly fun and I needed the laughs. I can always count on those when your Auntie Macy is around.

I sat outside with those two girls and we cuddled on the couch and talked about you. I showed them the video of you on my phone from San Francisco when you were at the airport and you were yelling “Bye Macy!” to her. She hadn’t seen it yet. We cried. I showed them the last picture I took of us on Mother’s Day. You didn’t even look like yourself baby. Your daddy asked me to delete it but I’m not going to. I’ll keep it forever even though that s not the way I want to remember you. I know it won’t be, but I still need to keep that picture.

Ro~ I have no idea when I started that post above. All I know is it’s now a Saturday night. And the only way I know that is because tomorrow is the day that I am hoping really will not come. Tomorrow, is the day that I think your obituary comes out in the paper and I think it’s the day we have your services. I don’t know how I am going to survive tomorrow. I’ve already asked Fernanda to find my twin in life, so I don’t have to go. She told me that you would not like that; that you would know it wasn’t me there. I disagree. I think you would like it because you always liked how we used to break the rules together. It was one of our favorite things in the world.

I still cannot believe you are gone. I wonder if I will ever believe it.  This has got to be an episode of “The Twilight Zone.” Everything that goes on in our new world without you doesn’t make any sense at all. I’ am so mad. The one thing about all of this that nobody tells you about losing a child is how slowly time passes afterwords. I swear I don’t know how I’m going to get through life if it continues to be this way. It is so slow that it is painful. I hid in my bed almost the entire day today. I know it’s not how you would want me to be, but I cannot help it. I care about nothing. This is such an awful thing to say, but I don’t even want to be a mom anymore.  And that is my most favorite thing in the world. Everything takes so much energy now. Trying to fill the void that you have left behind is impossible but I have to continue to try to fill it for your brothers sake. Especially Quinn’s. He is wandering around like a lost little puppy. It makes me so sad, and I am trying my hardest to shower him with anything I have left; but it is not much and I know he feels it. He is stuck to me like glue. You would think this would satisfy me and fill me up, to feel all of the love he has for me. It doesn’t. I feel like I am in the bottom of a hole in the ground, looking up at the bright sky and trying to climb my way up and out of the hole. I feel like I’m going to suffocate 24 hours a day. I feel like this is never going to get any better.

All I want to do is sleep because at least in my sleep I get to see you. Even though the dreams I have of you are not happy dreams yet. I mostly dream about you dying. I wonder if this is part of the process. There has to be some psychology behind this. I hope to someday have sweet dreams about you. I miss you, Ro. I miss you every second of everyday. I would give anything to kiss your little lips again. To hold your little hand and look into your big blue eyes.

Your daddy asks me all the time if I need anything. You know what my response is? “Ronan.” I can’t help it. Your name just slips out of my mouth without me even thinking about it. I know he wants you just as badly. He hurts too. But even he admitted to me today that he knows that he doesn’t hurt as much as I do. He gets the whole mother and son thing. He is such an amazing man, that daddy of yours. I am trying to be strong for him and he keeps telling me what a great job I am doing, but I know I am not. But he tells me this anyway. He tells me this as he lets me sleep the day away and takes care of the house, the errands, the chores, your brothers, and his work. I am pretty much useless right now. I hope someday I can make this up to him. I hope someday I can go back to being a productive person of society. I’m not even existing. I’m barley breathing.

I don’t want tomorrow to come. I’m expecting it to be like an out-of-body experience. I told Tricia tonight just to physically get me to your service tomorrow is going to be an ordeal. I have a vision of running away and never coming back. I couldn’t do that to you though. I have to keep my head on somewhat straight for your brothers too. I refuse to fuck up their lives. I have to keep reminding myself that there are other people involved in all of this. I have to keep reminding myself not to be selfish but that is all I really want. Is to be selfish about losing you and to pretend like I am the only one hurting. I know that’s not the case. The sadness that exudes from the others around me is very apparent. It is so very hard for me to see as I only want to make everyone feel better and comfort those around me.

Tonight, my besties from high school all came in. I had them over to our house. Everyone was so sad and I was having such a hard time as I don’t know what else to do with everyone else’s sadness. So what did I do, you may ask? I know you saw me and watched us. I insisted that your daddy hook up Rock Band so we could play it. Otherwise, I’m sure we all would have wound up in my bed crying like babies and that was something I could not handle. Rock Band was a great distraction and I even broke out all of our wigs that we used to wear for it. There were some laughs and your crazy Aunt Macy is an amazing singer! She stole the show. Quinn played the guitar and kept getting amazing scores of 97%. He was so cute. Liam attempted the drums, but was soon not so into it so he ran off to play something else. All of the girls left to go back to their hotel and I will see them tomorrow. I’m so happy they are here, but so sad it is for this reason.

As we speak, Macy, Tricia, your Daddy, Uncle Jay, and Kenny are out in the livingroom playing Rock Band, again. I am snuggled in bed with Quinn and Liam is sleeping with Papa Jim. Nana is in your room, (a.k.a. the hot lava room). I’m tired tonight but restless as well. I wonder what you are doing wherever you are. I sit and think crazy things about how you watch me and are just trying to get back to me. Is it torture up there for you too because all you want is to be back with me?? This all seems like a fucking lose lose situation to me. How could you be happy like I want you to be when we are apart?? Nobody knows the answers so I have no choice but to try to figure them out myself. I’m just going to let you be my little guide. I promised you I’d never let go of your hand and you know I don’t break my promises.

I’m getting sleepy now. If you visit me tonight, in my dreams….. please no more scary ones like I’ve been having. Let’s take a trip to the beach together or something else. I don’t want to see you dead in a stroller in my bathroom. But you know what, if that’s the only way I get to see you, I’ll take it. It’s better than not seeing you at all. I love you, Ronan. To the moon and back forever and ever. Sweet dreams, baby boy.

xoxo

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo