You are my God, my Heaven, and someday, my Peace

 

 

 

Ro baby. Hi. I’m still here. I’m going to say, unfortunately, because that’s what I’m feeling at this time. As much as I talk to you and ask you to take me with you…. I don’t think you are going to. You want me here, on this earth, and I have to do my time. I feel like I’m trapped in a prison cell and nobody is ever coming to free me. And I know you know why. It’s because nobody can save me, but myself. I have to learn how to set my soul free, to be reborn again because of now, I still feel like I am walking around dead. I cannot go on like this forever which is why I am forcing myself to do things that I really don’t want to do, but I know if I don’t, everybody loses. Even you. And that is not acceptable in my book because I have so much making up to you to do. I will tell you I’m sorry everyday, 20 times a day, for the rest of my life. I’m sorry for so many things. But most of all, for not being able to save you, when I promised you I would. I will carry the guilt of that around for the rest of my life.

I’ve tried to do a lot this week. Physically and mentally. I have to start trying to fix myself, bit by bit.  I’ll never be fully repaired, but I hope to find pieces of myself here and there and put them back together. My pieces will never fit perfectly again, so I’m going to have to relearn how to live with them, as shattered, cracked, bruised and battered as they may be. I have to learn how to live with this pain now, if I am going to stay on this earth.

This week is almost over. I’ve done a lot. A lot of therapy. A lot of mommy things. A lot of being productive. I want to say fuck it all and not do any of this. But I have this fire that lives inside of me now that refuses to let me be quiet and give up. I am pissed at the world and have too much passion from the pain of losing you. I’m not giving up. No matter how many doors I have slammed in my face. I deserve answers, I deserve to hear I’m sorry from the fucking medical world that failed us, I deserve to create changes in this fucked up world of childhood cancer. I deserve to help others. It is what you would want. You would want me to find a reason to go on. You would want me to break down every fucking door to get there. I will make you proud of me. I know how much you loved me. I know you loved me more than anything or anyone. I know you will always be proud of me, which is why I refuse to give in to this hell that is now my life. And FYI….. Fuck this Zoloft. I’m done with it. I’m not taking it anymore. I know I’m going to be told to wean myself off of it, but too bad. I’m stopping it cold turkey. Is that dangerous? Maybe. Is it going to kill me? I doubt it. I’ve made my mind up about this and you know how I am once I make my mind up about something. I don’t want to be on a medication because my feelings about losing you are too intense. I needed this medication during your treatment, when you were still here with me, because I took care of you, 24/7. You are gone now. And I am done with this crap. I don’t want to live a life of being on meds. I want to be cleansed. I want to get back in touch with my reality, without being medicated. I’m strong enough to do this. And if I’m not, I will reevaluate the situation. I’m not ready to give up my sleepy meds yet. The Ristoral that I have taking makes me less insane. I’m sleeping a little better. I’m not saying crazy things in the middle of the night to your daddy like I was before. That drug is hardcore and really messed with my mind. I don’t like to feel out of control and that is how I felt when I was on it. I’ll admit for a while, it felt kind of good because it was an easy escape and I didn’t have to be responsible for the way I acted. I could just blame it on the Ambien. I don’t want to have to blame things for my behavior. I want to be able to blame myself, not some drug that is effecting my sleep and my life, so deeply. I still need the Ristoral though. I’m not even close to being at peace with anything and I know that trying to sleep on my own is torture. The lack of sleep that comes with all of this is something that I cannot handle at this point. I need sleep. I need a break from everything and sleeping is the only break I’m going to get.

At this point in my life, I feel like I’m on autopilot. I think I’m back in shock again. I talked to you after my run tonight and I didn’t even cry. It was strange as I am always able to cry about you. Not tonight. I sat there, in the dark, on a bench, and talked to you but no tears came out. I feel numb. I feel like I don’t want to feel anything so I am going to just shut all of my feelings down. This is when I decided to screw the Zolfoft. I think this may be part of the problem. I want to feel and not feeling anything tonight, scared the shit out of me. I don’t have normal feelings at all. Happiness, excitement, and hope are not part of my world anymore. Feeling love from others feels foreign to me as if I’m not worthy of it. I feel nothing. Today, I was able to put on my FUCK CANCER game face and put together a plan of attack. I was able to figure out what steps I need to take in the right direction to make a difference. Baby steps, but I have somewhat of a plan. I have an idea for a plan of one of the many things I want to do. I have to do because I am so angry about the lack of knowledge we were given when you were diagnosed. It is unacceptable and cruel. And fucking bullshit. I know that things take time and baby steps are necessary. Baby steps are a start in the right direction and I know they will lead to bigger and better things. Good thing I am a patient person by nature. Patient but passionate. I think those things will both work in my favor.

I have so much more to tell you. About the amazing lady I saw from the MISS foundation this week. For the first time since losing you, I felt like maybe, just maybe, I can survive this. I can change things. I felt this way because Dr. Joanne may be one of the most incredible souls I’ve ever come into contact with. Instant connection not to mention she is brilliant. And compassionate. She’s taken her pain, educated herself on grief, and turned it into an amazing organization. She inspires me. I need to be inspired right now. I need to see that great things can come out of something so tragic and awful from losing a child. I need to know that I can become a better person through all of this and make a big mark in this world by helping to find a cure, by helping other families, by giving all I have to give. I am going to take everything I used to save you, and throw it into helping other people. I know I’m not ready for this just quite yet, as I have some things I have to work on myself. I have to make sure your brothers are o.k. as they need me more than ever. I cannot let them down. I have to do this for you. They deserve to have the best life possible. I have to be a part of making that happen. I cannot just check out, Ro. It’s a lot of pressure but I think I can do it. I promise to try my hardest.

I’ve worked out everyday this week. Hiking in the heat, boot camp, running. It all feels good. It makes me feel alive for about an hour which is better than nothing. It makes me smile when I feel the sweat stinging my eyes. It makes me realize for a small moment in time, I can feel again. It’s not always good, but it’s better than being numb. I don’t want to walk around this life like a robot. I want you back more than anything but I know that is not going to happen. But I also know that I will see you again. We will meet up in our next life together and it will be even more amazing than this one. I truly believe that. Our bond and connection is too strong for that not to happen, my love.

That is all for tonight. I love you to the moon and back, baby boy. I hope you are safe. Please watch over all the beautiful souls that love you so much. Please visit them in their dreams. You are not ready to visit me yet, as I am too consumed by my pain. You will know when you are ready to see me again, to let me know you are safe. Please keep your brothers safe. Thank you for keeping Fernanda safe. I know that was you. I know you are part of her soul. I’m not thanking God for anything anymore, Ro. I’m thanking you. You are my God. You are my heaven. And someday you will be my peace. I love you so much. I miss you every second of the day. I promise I won’t let you down.

Sweet dreams my little devil.

xoxo

 

I miss you. But I smiled though my tears for you.

 

 

Ronan. Hi baby. Missed you today. I woke up your brothers early. Well, early for us since we have been lazy beach bums sleeping in on most days. 8 a.m. was early for us today. I was tempted to let them sleep in as they looked so cozy and sleepy. They had to be at surf camp at 9 a.m. though, so waking them up was necessary. They so did not want to go. The both of them have been complaining that I signed them up for surf camp since I told them about it a month ago. Too bad, so sad, is what I basically told them. They kept insisting that they were not going to like it. I told them they wouldn’t know until they tried. It’s all week from 9-12. I got their cozy little buns out of bed, dressed and fed, and we headed down to the very cold beach this morning. They put on their little wetsuits and before I knew it they were off and running into the water. Most parents just dropped their kids off. I stayed and watched, took pictures, helped them and even got my sweats soaking wet as I was helping a little girl named Brooke, get out into the ocean. She was sooooo cute that I couldn’t resist. It was the best 3 hours I’ve had in a very long time. I was surprised how much I enjoyed just sitting and watching them and I was so impressed at how easily they picked up on it. Especially Liam. He really took to it and was really far out in the ocean with the instructor. He surfed up until the 3 hours were up. I am so proud of both of your brothers. They ended up loving it and can’t wait to go back tomorrow. I saw you while I was watching them. Those two little dolphins I saw the other day were out really close to Liam. I told Quinn it was you watching over Liam, to make sure he was safe in the ocean. He smiled and agreed with me. Thanks for that today, baby.

After the surf lesson was over, the boys were freezing so I took them over to the hot tub to warm up. Your daddy came down and brought down lunch to BBQ. We spent the next couple hours at the pool and the hot tub. After that, we headed back up to the condo. The boys were wiped out, but Quinn really wanted to rent one of those Surrey bikes that are in front of the Del. He has begged for weeks. Liam had no interest in going, and Woody had to work, so I headed off with Quinn to rent our bike. We rode all over the Island and ended up the school here. Quinn got a big kick out of my crazy driving and jumping the curb with our bike at the school. He was cracking up and I explained to him the importance of doing “boy,” things like that. I told him if you had been there, you would have made us do it over and over. In your honor, we took our Surry bike and jumped the curb 4 more times. We laughed the every time. It made me miss you so much, but it felt good to laugh with Quinn. I could tell the day meant a lot to him and it meant a lot to me as well. When we finished with our bike, we walked over to the Hotel Del to get him some ice cream. After our big day out, Quinn came back here and 20 minutes later, he was passed out cold. He slept for a few hours and woke up starving so I took him to get dinner. Liam, once again did not want to go. He is such a little homebody.

I have not had a day like today in a very long time. One where I almost enjoyed myself. Spending time with your brothers, watching them do something new, is the closest I’ve come to almost feeling happy since you left us. Happy, but I missed you a lot too. I know those two things will go hand and hand for the rest of my life now. I’ll always picture  you with us, in everything we do. I know today, you would have been out on that beach with me, with your boogie board, watching your brothers and mad that you couldn’t be out surfing with them. You were always trying to keep up with them and I was always amazed at how well you did. Your fire and zest for life was something I have never seen in anyone in my life. You took everyday by storm and that is something that I miss doing with you. Together, we were unstoppable. I miss having you everywhere with me so much. If you can’t tell, I have a  new little shadow now and his name is Quinn. He is stuck to me like glue and I am really trying to embrace him as much as possible. I can feel myself reconnecting to your brothers again, but Quinn is working extra hard to be by my side 24/7. Liam is so independent, that he is happy anywhere and has been spending a lot of time with your daddy. They are such similar creatures. I love watching the two of them together.

That is all for tonight my little monkey. I’ve got to try to get some sleep as we have another early day of surf camp tomorrow. I miss you more than words could ever say. I love you to the moon and back, baby. I hope you are safe. I still worry about you so much. I would give anything to be able to kiss those sweet little lips of your.  Sweet dreams, Ro.

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

Fuck you fucking world

Ronan. I’d guess I’d better get used to these days of not knowing how I’m going to feel and what to expect. I guess I’d better, because yesterday was so hard, that today had no choice but to be better. The Frakes came over this morning to tell us goodbye as they had to head back to Phoenix. We were all sad to see them go; we loved having them here with us. After they left, we walked into town and had some breakfast. It turned out to be a sunny and nice day over here at the beach. Liam and Quinn were so anxious to get down to the beach with your cousins. We spent about 4 hours down there today. They had so much fun boogie boarding, playing in the sand, and running back and forth from the beach to the pool. I spent most of the day in the ocean, trying to surf. The waves were small today and they were breaking really close to shore. It was still nice to be out in the ocean, alone, thinking about you. I felt peaceful out there, a feeling that I never get to feel anymore. I guess I feel closer to you when I am closer to doing things more associated with the earth and this big world. Being in the ocean makes me feel vulnerable which in turn allows for my guard to come down and I have no choice but to sit back, open up my mind, and try to push away the pain to allow myself to feel something for you other than hurt and sadness. I like this surfing thing so I think I’ll stick with it. After our afternoon at the beach, we came back up to our place and got ready to head into town for dinner. Quinn was so cute and wanted to wear his “fancy Ronan” clothes to dinner. Little Fedora hat and all. It reminded us all of you so much. You loved the way I would dress you up in with your matching hat and clothes. The entire time we were at the pizza place, all I could think about was how much you would have gobbled up all of the pizza and loved it. It was strange sitting there without you. Too quiet and Liam and Quinn are too well behaved. I was missing your mischief so much tonight. Some kid at the table next to us was screaming and crying. It was music to my ears.

After we came home from dinner, we met up with your cousin, Layne, who is just a little bit older than Liam and Quinn. We met him in the grass with his mom and sister and they all came up to drop Layne off for a sleep over. After I got them settled, I headed out for a late run. I only did 4 miles, but it was fast. I sat after my run for a long time and talked to you and looked up at the stars. I kept going back to the last couple of days before you passed away. You weren’t really talking to me anymore, but I must have asked you 50 times, where you were going. I knew you were going away, and I wanted so badly to know where you were going. Every time you I would ask you this, you would yell at me that you were going “NOWHERE!” That brings me comfort now. It makes me think you didn’t really leave me, that you are still here, right beside me. I so wondered what was happening to your little mind, what things you were seeing, and all that unknown stuff scares me so badly still. I still get sick to my stomach when I think about you having to die, to go through all of that and I couldn’t go with you. I still can’t get over that you are not mine to take care of anymore. I promised you that we were going to get you all better, I promised you so many things, and now I am left with empty promises that I didn’t get to keep to you. I know this was all out of my control, but it doesn’t stop the guilt from taking over. Your dad and I used to have the conversation all the time about how we didn’t know what we would do if anything ever happened to you or your brothers. We would go over all the crazy things that could happen, like a car accident, one of you getting hit on your bike, getting kidnapped. We NEVER thought about one of you getting cancer. It was never even on our radar because in our world, that just didn’t happen to kids. We didn’t even choose to really look the other way about it, because we were so uneducated, that it just didn’t exist. And now look, Ro. You, the most precious gift to everyone in our family, are gone. Just like that. Poof. How can this be? Were you really mine? While I was sitting at the pool today, watching the 3o kids all run around, I actually thought this to myself in my head. Were your really real? How could I have had 3 such blissful years with you and then in a heartbeat, it was all taken away? What did I do in my life to deserve this? Was it because I cried when I found out that you were not a girl, but you were a boy at our ultrasound? I think about this all the time. How fucking stupid was I? After you were born though, the whole wanting a girl thing flew out the window. People would always ask if I wanted to try for a girl and my response was that I was so happy to have my 3 boys that I couldn’t picture it any other way. You three boys were the best thing to happen to me. Having 3 boys was a dream come true. I’m so lost without you, Ro. The last few days, I remember asking you what in the world I was going to do without you. I don’t think I’ll ever figure that out. Life is broken beyond repair. But somehow, I have to hang on to the little that we have left, not for myself because I could care less about me….. but for your brothers and your Daddy. They are all that matter now. I can survive living like I’m buried alive. This is the burden I will carry with me for the rest of my life and I will do it for you. You will forever be burned into my soul and I hope someday that the sadness will fade away just a bit and I will learn how to smile without it being so fake. Because of now, every smile that comes from my face is so forced and not real. I have to smile to keep the tears from falling and there is nothing natural about my smile now. It hides all the pain that I am feeling. I can put on an o.k. show to get me through the days, but it is exhausting.

Ronan. You should be here. All 3 boys are out in the livingroom now, chatting away and watching a movie. I cannot tell you how much having your cousins around this summer is saving us. Your brothers are enjoying them so much. It’s times like these when you find out how much family truly means. We are so blessed to have them all surrounding us. It worked out perfectly that they just happened to be here at the same time we are. We are so lucky to be so loved.

Do you know what else we did tonight? After we walked home from dinner, we went past the Hotel Del where your Daddy and I got married. Quinn took a picture of us in the exact spot where we said our wedding vows. Almost 10 years ago, Ro. Who would have known our happily ever after would have ended up with us having to watch one of our children die. FUCK YOU FUCKING WORLD. Why was somebody so pissed that we did have the perfect life, because we did. And I’m not ashamed to admit it because we worked hard to make it that way, although the perfect life did come easily to us. It was all based on being a good family who loved each other so much. A mom and dad who were best friends, 3 healthy boys, no drama, no stupid nonsense like drinking, drugs, lying, cheating….. we were just so happy and content with all of our little blessings. We were so content and felt so blessed. You know your dad would tell me every other day how lucky we were. We knew this, we embraced it, and we didn’t take it for granted. I’m so angry at how you were taken away from us and now we are left with all this pain and sadness. Complete bullshit. I know you know this. You, most of all, did not deserve any of this, Ronan. I love you and I miss you and I’m scared of the person I’m going to become without you. What if I can’t do this? What if this is all too much and I just end up pushing everyone away? Because as of now, I don’t like the person that I am. I’m ignoring all of my friends…. my best friend, and your Godmom, Tricia, included. Who does this? I do. Because I hurt so much that I don’t want anyone else to have to see me suffer. I would rather do this alone but I know that is not going to get me through this. I know this, but you know how stubborn I am. You were the same way, little man. I think I just need time. Time to be alone and grieve for you by myself. You lived inside of me for 9 months and after that you really didn’t leave my side for almost 4 years. Having you just gone, I feel like I am dead too. I just need some time to slowly come back to life and my independent self knows it is going to have to be on my terms. Guess it’s the Capricorn in me. I will let you help me though. When you know I am ready, I will be waiting for you. I’ll wait for you for eternity, my love.

That is all for tonight, sweet baby boy. Please don’t leave me. Please stay by my side. I need to know you are here. I need you to help me get through this because no one else can. I love you to the moon and back, Ro. Sweet dreams.

xoxo

P.S. To all you lovelies who came out last night. Thank you so much. My post was a little angry tonight, but only because of my heart that is broken into a million pieces. I cannot even describe to you how much I miss Ronan and how shattered our world is without him. I am so thankful for you all and how many of you that love us; please know that. I am so inspired by the event last night that I really want to turn it into a yearly thing. Next year, I know we can make it even more amazing although I heard from so many people how wonderful everything was. Next year, I will be strong enough to be there and I hope you can feel in my heart how beautiful I think you all are. Thank you again, a million times over. Ronan’s story has to continue on, our love story cannot end just because he is gone. It is because of all of you, that I know we can do this. His love, his beauty and his life will continue on because of all of you and the way I know his soul will be there guiding not only me, but you as well. Ronan had so much love, fire, and fight in his heart that I cannot wait to see what becomes of him and his story. Thank you all again. I love you so very much; even the people whom I don’t even know, but cannot wait to meet. Sweet dreams my dear friends. May your dreams be peaceful and full of love.

The signs and The stranger

Ronan. I had a hard day. I was missing you extra much today; if that is even possible. We woke up late as we have been doing during these lazy, beachy days. I had a phone appointment to talk to my therapist, Sarah. I walked down the boardwalk and sat on a bench to have our session. I told her how it was easier in some aspects to be here, away from home, but hard as well because of all the memories I have of you here. As I sat and talked to her, there was a little boy about your age playing in the sand right in front of me. He kept taking the sand and throwing it everywhere. So something you would have done. I sat and watched him and cried and told Sarah how much it hurts me to see things like this. How much that deserved to be you playing in the sand and throwing it everywhere. We had a good talk. We talked about how I worry about you and how much guilt comes with having you gone. Guilt for doing silly, normal things. I told her I wonder if you are watching me and can’t believe that we are all trying to do things that make us happy. I wonder if it hurts your feelings. It hurts my feelings, Ronan. I don’t like doing all the things we are doing without you. I told her as much as I would love to believe in the picture perfect world of heaven, with you dancing with angels on clouds with harps playing in the background; that I don’t. I’m having a hard time with the not knowing part. We ended our conversation much like the way friends do. She worries about me and told me to call for anything. I will talk to her next week unless I need her sooner.

After I returned back from my talk with Sarah, your Daddy took your brothers over to the Rec Center to play basketball. I crawled back into bed and slept for a couple more hours. I cried and slept and cried and slept some more. I did not want to leave my bed today. I wanted to stay in bed with your blanket and think about you. Right when I was trying to talk myself into getting out of bed, Mr. Sparkly Eyes called. I swear it is always you who tells him to call when I need a good kick in the ass. As soon as I answered he asked what was wrong. I told him, nothing, but everything. He asked if I was o.k. and then said he knows I’m not, that I’m hurting like hell. I cried for the few minutes that I talked to him but he then made me laugh by asking me if I was crying because the ocean from surfing kicked my ass yesterday. I then make some remark that it was the other way around and I kicked the ocean’s ass. He then said, “That’s my girl.” It was something so little but it made me feel better. For about 2 minutes anyway but that’s better than nothing.

Your brothers came back from basketball and were begging to go down to the pool with Jake and Carter. I said I would of course take them so we spent the afternoon down there. I absolutely love being with all 4 of those boys, Ronan. I love to watch them play and laugh and Liam and Quinn are so happy with them. I was watching them run down the boardwalk tonight and I pictured you running behind them, trying to keep up like you always did. You were always so much older than your little 3 years as you could hold your own as well as your brothers. At one point, I looked over and Carter had his arm around Quinn as they were walking together. Such a big brother thing and it made me tear up because that is so something Quinn would have done to you. You would love being here with all of your cousins. They are the sweetest kids.

After our day at the pool and brrrrrr it was freezing, we had Kenny, Stacy, Mac and Kennedy over to grill again. We all sat outside and the kids swam and we enjoyed our time together before we were all frozen solid. The 4 boys continued to jump in and out of the pool and hot tub despite the cold air. It was a good night after a hard day. Everyone is asleep now and your Daddy goes back to Phoenix tomorrow. We are going to miss him. I’ve got to figure out how to keep your brothers entertained. They are pretty easy to please so it shouldn’t be too hard:) I am lucky to be able to take such good care of them.

So, after a hard day I can tell you a few things got me though it. One being this silent auction that is going on at The Biltmore this Friday. I cannot believe all the community support and love that has come of all of this. I am in awe, speechless, and so incredibly proud of the way my son has inspired you all. This all came together in such a short amount of time and the donations and people offering to help in any way they can brings me to tears. I want to be there so badly, but I’m not sure if I can. One of the biggest reasons is emotionally I just don’t think I am ready. Ronan passed away such a short time ago and I feel as if the most important thing I need to be doing right now is just trying to mourn him, respectfully, and to take care of my twins. There is also that whole guilt thing I am dealing with. This is a totally new emotion for me, as I’ve never really felt guilty for anything in my entire life…. and I’m having a really hard time learning what to do with it. I’d be lying if I said I wouldn’t feel guilty for being at this event when it feels like such a celebration for Ronan; which it should be and  I am so thankful for that. But, I, as his grieving mama, am just not ready to celebrate him in this way yet. Please know that I would love to meet all of you who are doing so much to support Ronan’s cause and there will come a time when I can mentally be in that place, but it is not now. Everything is too fresh and raw. I will be thinking of all of you though as you all have impacted my life in a huge way. I now hear all the time about how Ronan has made you review your way of life, but please know all the love and support coming from each and every one of you is changing me as well. You make me believe in the power of selfless love and what it means to be a part of something bigger than yourself. You all make me believe that Ronan and I can change the world into a much more beautiful place. So thank you from the bottom of my heart for making this event happen all of you little busy bees out there. I just know the sky is going to be filled with the brightest stars that night.

A couple of other things that helped me though my day came in the form of some emails that I would like to share. One, I got permission to share. Her email was so sweet and I loved what she had to say. Thank you, Alicia for this. I loved hearing how your day ended. Here goes…..

Maya, Sorry to disturb your family time but I HAD to let you know what I experienced today. After a hectic day, I had to rush to pick up my girls (6 & 4 in 2 weeks) from school, rush home to get them dressed & to a reception for the team my husband coaches during his off season. We made it to the Botanical Gardens with minutes to spare. I got the kids out of the car & they took off running. Taylor (6) ran towards the venue, Ashley (3) ran straight to & through a giant mud puddle. There was mud everywhere, all over her white dress, face, hair. I was PISSED. We’re already late. Now I have to go home & change her. All that was running through my mind is how our being late would look & what people were going to say/think. I ran over to Ash & as I reached to grab her, a HUMMINGBIRD flew between us. My hand was inches from her arm & there couldn’t have been a foot of space between our chests & all of a sudden there it was. I jumped back. It hovered there for a few seconds, flew around Ash 3 times & flew off. It honestly took my breath away. I instantly though of you & Ronan & how selfish I was being. You’d do anything to have Ronan dirty some clothes & make you late. When we released the balloons for Ronan, I promised I was going to be a better mom, wife & friend. Now, here I was worrying about stuff that doesn’t matter, about people who don’t matter. I honestly believe that hummingbird was your son reminding me of that promise. With tears streaming down my face, I picked up Ash squeezed her tight & kissed her all the way back to the car. We never made it to the reception, instead we grabbed some ice cream & walked along the bay front, muddy clothes & all. Thank you, to you & Ronan for opening my eyes!

Alicia Joseph
This last email came to me tonight from a stranger but it was such a gift to me. I talked earlier about how I have been wrestling with the perfect heaven world. I swear to god, this is a sign from Ronan as my therapist, Sarah and I had a long talk about this subject today and then this email came in tonight. I cried to Sarah on the phone because I told her I’m having a hard time feeling Ronan around me. All I want is to know he is here and I’m not getting any kind of a vibe. I think right now, Ronan is trying to let me know he is here, but he is doing it through other people. Sarah had a dream about him the other night and he was smiling and waved to her. I know he is here still, I think I just have to get though this deep sadness before my mind and body will be more open to letting him in. Anyway, back to the email from the stranger that I got tonight which by the way, made me cry like a baby. Here goes….
Dear Maya:
I am just another person sucked into your blog. Yes, writing from a ridiculous unrecognizable email address.  I chose to email you privately versus posting this to your blog because I hope this message gets to you and resonates.
I lost 2 friends to cancer, sisters.  1 this past September 2010, as your baby’s fight was beginning, and her younger sister 8 years prior. Every day I ask myself how their parents go on. My friend was 38 when she passed, and her younger sister just 26. The baby and middle daughter of 3 girls.
This email is not going to ramble on about my friends but give you some brief insight on why I want to deliver this message to you. Your writing, your thought process, your profanity and your honesty reminds me so much of my dear friend and I cannot help but feel connected to you because of it.  She fought cancer for 22 years having her first diagnosis as a teenager, and bravely battling recurrence after recurrence. Her younger sister suffered for 4 years, before losing her battle.
The one thing I know my friend loathed more than anything was having others bring up comparisons of their 60 year old aunt bessie’s cancer battle, or their uncle joe’s who was 50 something, and so I do not make any comparison of their cancer, to childhood cancer, whatsoever. It would seem everyone who met her or knew her story felt compelled to discuss a friend or family members cancer fight. Enough already with it. This is your life, your reality, and your pain. There will never be any fitting comparison. Live has handed you the most cruel dreadful burden.
I am not a bible beater. This is also not a religious talk…  I get your whole dismissal of God, and though I was raised Catholic I have had so many doubts about why God would allow things like this to happen in the world.
Now that i’ve told you all of the things this email isn’t – please let me tell you what it is… I am hoping to deliver but one simple message, one which was passed onto me about “heaven” – After my friend passed away, I happened into a church where strangely enough there was a priest talking about death. Something he said, sat with me and I share it with you.
He said… heaven isn’t out there… its not up in the clouds or in some imaginary paradise. Heaven he said is a place filled with love and where you are with God. He went on to say that God is in each of us. When you lose a loved one, they are with you in the truest sense every waking hour and resting hour. I will never think of Ronan as being somewhere out there, but with you. With you Maya.
Everytime I read one of your posts about the girl from the store who said shit and caught your attention, recurring songs on your ipod, your need to run up the mountain alone to find solace, or your trip and fall on your recent run, or a flannel clad girl in the end of May who runs back and stops you in the street, I keep saying to myself… he’s there Maya, he is trying to get your attention to let you know he is right there. No one on earth has more moments of serendipity as you have since Ronan passed away.
He lives inside you, in a place where he can feel every bit of love that you could never express to him through mere words, or even actions on this earth. The place you unknowingly created for him, heaven.  Everything inside you that aches from loving him that is where he is. He is not hurting, not suffering. That priest also said that you can go so deeply into meditation that you can talk to that loved one … in the place where you truly can share your feelings, fears, unspoken words, and you will feel them communicate back with you if you get better at meditating deeply, and finding them. When you take your runs and midnight swims and you’ve beaten your body to a pulp so that your mind is sort of blank, you are getting close to that place where you can find him, at least I think you are. Its a place where you can meditate and be alone with him and ask him to talk to you. Do you think I am crazy? Perhaps.
When you worry that Ronan is out there and you cannot think he is safe or is he wandering around without you.. never never never believe that.  Ronan is trying so hard to get your attention… perhaps even through emails, postings, and blogs from random people.  Every time I read something new from you, I believe it even more. I think I have to point it out to you.
Fuck this life that you cannot kiss his sweet lips and hug him and giggle with him, or cry with him. Fuck life that you never had the chance to fight on for years even when you were prepared to. Life is wretched and miserable and I hate your families pain. FU Cancer. I am not one of these people who thinks Ronan wanted to be “with God”. When you said he wanted to be in AZ with his family. I believe that wholeheartedly. I believe that is why he is still with you. He is not about to leave. He will always be your perfect gorgeous baby boy, and I know you will always mourn and grieve his loss as long as you shall live.
For years my friend had dreams of her sister who passed away before her. The day before she died she told me that she had the most vivid dream that her sister was well, and running and laughing, and asking her to catch her and come with her. She was chasing her sister in the dream, and couldn’t catch her. Her sister told her nothing was hurting anymore.
My friend told me it was the most beautiful dream and the one she couldn’t shake because it was so real. None of her prior dreams she said had felt so real. Even the dreams that for years had her walking up with tear soaked pillows. My friend passed away the very next day. I pray those sisters are together and have no pain, and no suffering.
I am sure you are sick of cliché’s and BS. If you decide this is the biggest load of crap and you want to post it and tell others to keep this shit to themselves then I get that too.  But there is a part of me that hopes and prays you will be able to find my message makes sense to you.
When you told Ronan, to come with you and leave that place, he did it. He went with you and that is where he has stayed and where he will stay. Your soul and his will be locked together for eternity. Keep doing what you are doing. Keep writing to him, keep working towards your goal with his foundation to keep him alive, to bring hope to others, to teach everyone about undying love and devotion. You and Ronan speak to masses of people and can make a difference in this world. He has impacted more people in his short life than I could dream of in my 40 years on this earth.  I wish you so much inner peace and the ability to connect again with Ronan in a much deeper spiritual way. I hope you feel him with you, truly feel his presence. I hope he keeps giving you little signs and that you can recognize them.
-A stranger
Well dear stranger… I wish I knew who you were because your words hit me harder than anything that I have been told so far. I believe everything you just said to me and it makes absolute sense. Ronan’s heaven is with me, with his family, and even with all of you. He has left me little signs everywhere, I just didn’t know how true they were until now. The hardest part of this is not being able to physically see my baby boy anymore, not to be able to touch or hold him. I will never get over that but I have to believe his spirit is still here right next to me and someday, I will meet him on the other side. When it is my time to go. Until then, I will be sad for the rest of my life but I know that I will find a new happy as well. In the kindness of strangers, the love from my family and friends, and pushing forward to keep Ronan’s story alive so we can help other children. I want Ronan to be the voice for children with cancer everywhere. He would never give up this fight so I will do whatever it takes to support him. I couldn’t do this without all of you and I do believe the more people we have on our side, the more we are going to be able to do. So thank you again, for believing in my baby, for loving your beautiful, “perfect,” lives enough to know that Ronan deserved to have that too. And since he was robbed of it, the fact that you are all willing to continue to fight so hard for him with me says so much about the kind of people you are. I am honored to have you with us so we can continue on Ronan’s journey. I love him so much. I miss him so much. And I would give anything to have him back. Somedays, I swear I am going to just die from sadness but then I force myself to think about everything I have that is so beautiful in my life. I have to make a difference for everyone around me; not just Ronan. Liam and Quinn deserve to grow up and watch how if you live a life full of fight, passion, and love…. you can survive and do anything you want. I promise to make them proud of me too, by living our life as if Ronan is still here. By laughing about him, by talking to him, by celebrating him, by loving him forever.
Alright my sweet friends. I’m a snotty mess who needs to calm herself down. I wish tonight what I wish for every night. Blessings for all of you and sweet dreams of Ronan. He is safe… I know this now thanks to the stranger:) Tonight, I will fall asleep knowing that he is not roaming the streets of Vegas. Although, he would have made a very nice newest member of “The Wolfpack.”
G’night my sweet boy, Ronan. Tonight and every night, I’ll fall asleep with you in my heart.
xoxo

And a very special thank you to my Silent Auction Fairy Godmother. Yes, you know who you are. I’m telling you right now, that Ronan is going to watch over you everyday, for the rest of your life. Your generosity and pure love for someone you’ve never even met is unheard of in this day and age. It’s people like you that make this world such an amazing place. Thank you, my dear friend that I hope to meet someday 🙂

I live my life for you

Ronan. Ouch. Ouch doesn’t come in the form of you hurting from your broviac dressing changes we used to do every week. Ouch doesn’t come in the form of the pokey shots we used to have to give you after you finished your round of chemo. Ouch now comes in the form of living this life. This life without you. It comes in seeing all of the little kids who are your age running around the beach. It comes in the form of seeing the beach towel today that had your Paul Frank monkeys all over it. It comes in the form of my obsession with taking pictures and you are now missing in every one of them. You are just gone. I’m waiting for you to appear in a picture of your brothers, right in the middle where you used to always be. It is beyond weird not having you around to take pictures of, Ronan. You were such my little ham and I used to absolutely die over talking pictures of you and your big blue eyes. I miss you so much it hurts. The pain is not getting any better. I still think it is getting worse as the days go on and I watch everyone else in life with their beautiful kids. I sit and wonder to myself, do they know how lucky they are? How lucky they are to be able to just hold the hand of their little ones to cross the street? How lucky they are to deal with a tantrum or go through the terrible twos? Those people I watch from my new set of eyes are so unbelievably lucky. I find myself sitting back a lot now and just absorbing my surroundings and wishing for you. I want to scoop up every little person I see and tell them I love them, because I do. They all remind me of you in different ways. The little boy with the blue eyes, the little girl with the mischievous smile, the laughter and innocence that these little people are so blessed to have and they don’t even know it. And they shouldn’t know it; but their parents should. I hope so much that all these people who are touched by your little life now take the time to be grateful for having something so simple and beautiful. I hope they kiss and love their kids so much more now. That is my wish for you, Ronan. After you passed away, I sat and kissed your little cold lips about a dozen times. I wanted to sit in that room with you and kiss you forever. Instead, I now get to sit and cry about how I will never be able to kiss your little lips again. You had the best lips too. They were so full and soft. Your daddy and I were talking about you the other day and how unbelievably perfect you were. I keep thinking you were too perfect for this world? Your beauty was unlike anything that I have ever seen before. I don’t understand why you had to be taken away from us. I will never understand this which is why something has to be done, Ro. After this summer is over, I’m going to figure out a plan. I have got to help other kids like you who deserve to survive this disease. I will do it for you and in your honor. I know this will not bring you back, but I know it is something that would make you proud and smile. I miss your smile so much.

Yesterday, I laid in bed for a long time and held your blanket and cried. I cry about you all of the time now because I am constantly feeling the emptiness of life without you. No more shock, no more numbness. Your brothers have been taking really good care of me though. Quinn likes to lay with me when I am sad and we talk about you. He falls asleep holding my hand much like you used to always do. You have the most amazing brothers, Ronan. I thank god for them everyday of my life. I don’t know what I would do without them. We are slowly finding our way back together. They have had such a great time being little beach bums with their cousins, Jake and Carter. It is so therapeutic to watch them grow close to their cousins. It gives me a lot of peace of mind. One of the most beautiful things to come out of this has been seeing all the new bonds and relationships that have been formed. I said this the other day to someone….. that one of the things I treasure most is how I’ve watched my beautiful girlfriends all come together and the new friendships that have come from this. The bond that they have all created is such a gift to me. They have all given me such a gift by helping me through this that I hope this gift is something that I have given to them. It’s been like watching a puzzle slowly come together and I know the friendships that have been formed will be friendships for life. We are all like sisters now. I watched the way they all came together for our family and for you. They fought and continue to fight for us. I never knew what a powerful thing love could truly be, baby. It was only when you got sick that my eyes were opened up to a whole new world. It is a beautiful world indeed, but I so wish I was learning this lesson through something else rather than losing you. I don’t know how we are going to heal without you, Ronan. I think our new life is going to have to drastically change. It’s going to have to have a much bigger purpose, a much bigger meaning than living in the little bubble that we lived in before all of this. We are working on the healing part of this a now. Baby steps. The ocean. Family time. New adventures. Simpleness. I can’t tell you how exactly we are doing this, but the fact that we all get up everyday and somehow manage to smile is a good enough start for me. It is all we can do right now, Ronan.

Today, Quinn and I were taking our usual walk to Starbucks. I had on my sunglasses, fedora hat…. my usual, “hello I just woke up look on and I’m going into town.” We were walking on the boardwalk and this girl and her boyfriend passed us. I only noticed her because she had some flannel shirt on and I thought how cozy and cute it looked. A minute later, I heard someone running up behind me and she goes, “Maya!” I turned around and it was the girl in the cute flannel shirt. She then told me how she reads my blog. I was shocked  she recognized me and I asked her name and introduced her to Quinn. She introduced me to her boyfriend and I asked where she was from; she said Arizona. It was so random and so sweet. So to Allie today, thanks for having the guts to run up to me and say Hi. It was really nice to meet you:) Enjoy the rest of your time here, although I think you are leaving to go back to AZ soon. I hope you had a nice trip here.

After we returned back to our place, we met up with Stacy who is here for the week with her kiddos and Kenny. So fun to have them here with us. We split up since I had a surfing date with Katie and Sarah. We took lessons today and I’ll have to say it could become my new obsession. For the first time in 9 months, I had to fully forget about everything in my life and focus on fighting to get up on that board, stay up, and concentrate like I have not had to concentrate on just myself in a very long time. We stayed out in the ocean for about 3 and a half hours today. It was just what I needed and I loved every second of it. I’ve always wanted to surf. So stupid that I’ve waited so long to try something that I’ve always wanted to do. There were always too many excuses before. Well, not anymore. I’m done making excuses, Ronan. I’m going to live a life full of passion and adventure and I’m going to do it not only for myself, but for you too. Life is too short to let things hold us back. All fear is out the window. I’m done being scared. You were never scared of a thing in your life. You have left me this gift and I will keep living this way for you. I owe you so much for teaching me so many lessons. You are my hero, Ronan. You are my everything.

That is all for this evening little man. I love you to the moon and back. I will keep you in my heart forever. Sweet dreams, my love.

xoxo

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo