To live with ghosts requires solitude

Ronan. Is the world ending? I have never in my life had a year full of so many awful things happening around me. 2 deaths on Coronado a couple of weeks ago. I don’t know much about what went on, as I don’t watch the news or read the paper anymore. I only heard the whispers of others around me. I heard that the little boy passed away a few days ago. It made me cry. It made me sad. It made me angry for this fucked up life that his parents will now have to go on living, without their little boy. After an awful night of sleep last night, even with my Ambien, I woke up to very sad news. A girl that I had never met, but we had talked via email many times, lost her battle with cancer.  A young girl, around my age. She was married and she wrote an amazing blog about her life, her passion, her strength and her determination to beat it. Her name was Jen and I followed her blog. I don’t follow anyone’s blog, but I stumbled on hers a couple of months after you were diagnosed. I reached out to her, to tell her how inspiring she was, how much she inspired me to keep fighting for you and to never give up. She emailed me back and it went from there. I fell in love with her and her fighting spirit. I told her I was convinced that the two of you, would beat the odds. We tried to meet up in New York City the last time I was there with you, but it just didn’t work out. She was sick and you were sick. She so wanted to meet you and I so wanted you to meet her. I wanted to wrap my arms around her and give her the hug that she deserved. She recently went all the way to Switzerland with hopes that this new trial would make her better. It didn’t work. This is all so unfair. I hope now you get the chance to meet her. I hope you will look after one another. Her service is tomorrow. She loved life so much and wanted her leaving of this world to be celebrated. She wants a dance party for tomorrow. This is what was posted today:

As you are all aware, Jen’s funeral is tomorrow and we wanted to give you some insight into Jen’s last wishes regarding honoring her memory. Jen believed “life was for the living.” She wanted her funeral and any other memorials to be as much of a celebration of her life as possible. In fact, she even wrote of possibly wanting a “dance party!” In that vein, please feel free to smile and laugh as you recall special memories of Jen and please dress however you like. Jen would have loved there to be some color in the room and not have everyone dressed in all black! 
As much as Jen wanted her memorial to be upbeat, she was respectful, however, that everyone mourns in their own way and that there was no “right” way to do so. Please help us honor Jen and her legacy in whatever way you see fit. 
We have cherished reading the tributes written here and on Facebook. Please continue to contribute memories, thoughts and wishes. Those who love Jen have already taken great comfort in your kind words.
PLEASE TAKE THE TIME TO READ SOME OF HER STORIES. HER LINK IS ON THE SIDE OF MY BLOG, UNDER MY OTHER HERO. OR GO TO WWW.YOUFEARLESS.COM
LET’S HELP HER CONTINUE HER FIGHT AND HER VISION. SHE NEEDS EVERYONE NOW MORE THAN EVER TO KEEP HER DREAM ALIVE. I LOVE YOU, JEN. TAKE GOOD CARE OF MY BABY.
Although I didn’t know Jen, she inspired me throughout your journey, Ro. She was all about living a life without fear. She felt, if you took fear out of the equation, you could accomplish anything. I am absolutely sold on what she believed. Fear is for the weak. Fear is for the ignorant. Fear can ruin your life. If there was ever a time that I was feeling defeated, frustrated, mad, or just plain tired, I would often time read Jen’s blog and email her to tell her thank you and how much I believed in the two of you. You two should have both survived this. You two should have both beaten the odds. My heart breaks for everyone who knew her, but how lucky they were. I hope you two have the biggest dance party tomorrow together. She would have fit right in with us and our love for dance parties, Ro. I know you two will take good care of each other. In honor of her tomorrow, I am going to make another music video just for Jen. Get ready for another youtube hit:)

I also found out that one of  our good friends’ brothers, Eric, passed away from cancer yesterday. I spent a summer in Newport with your daddy and Eric when your dad and I first started dating. He was such a gentle soul and I always felt as his eyes were smiling. My heart is beyond broken for his family. I called your daddy tonight and we talked about him going to the services on Saturday. I told him I really think that he should. We both won’t feel right if he doesn’t go. Mark has been a very good friend to us. Your daddy should be there for him. Eric leaves behind a wife and two little boys. I just want to know what the fuck is going on in the world. Two amazing people, just gone. It’s as the world is opening up and swallowing all of these beautiful souls up, one by one. It is beyond unfair. Hey world. I have an idea. Why don’t you take the freaking Casey Anthony‘s of the world instead and leave all of the amazingly good people alone. You are about to royally piss me off and I am on the verge of doing something crazy just to see if I can fucking cheat death and survive the odds. Fuck you world. You can piss off.

I went to Yoga this morning. Yay me! I have been saying I was going to go all summer, but I just haven’t gotten myself to do it. No Yoga fail this morning. Liz picked me up and we headed off to do a class. I was afraid to go this morning. I have been avoiding it. The last time I went to Yoga, was while you were in the hospital. I went and ended up crying pretty much the entire time. It seems to open up a lot of emotions for me. Today, I was o.k. I tried to focus all of my energy on you, Jen and Eric. I tried to stay positive. At the end of the session, our instructor asked us to close our eyes, and to be thankful for the life we had. I had to restrain myself from standing up and screaming at the top of my lungs that I was not thankful for life, because you are gone. I am mad today, sad today, lost today. I don’t know who I am without you. I don’t want to be anybody. I am trying to take these thoughts and make them motivate me. Motivate me to do something amazing for you. I will, because if I don’t, then who the fuck will? Nobody. I have to take these lessons that I have learned and turn them into something good. For the sake of you, and all of the other people in the world who are affected by cancer. Nobody is safe. This can happen to anyone. I still wish this were me and not you. I would still trade places with you in a heartbeat.

So, after I finished Yoga, Liz and I walked to Starbucks. We got a coffee and talked about everything from UFO’s (duh, they totally exist) to my sparkly nail polish that I am obsessed with. Oh, don’t worry….. it was just a nice peaceful stroll back to The Shores when we saw the smoke pouring out of one of the units. Not only was smoke pouring out, but flames as well. And not just any flames, but huge flames, out of the sliding glass doors and out to the balcony. One of the units had caught on fire. It was a big fire and everyone sat outside and watched, took pictures, and video taped it. The firefighters showed up but it seemed to take them forever. Liz and I just looked at each other and both asked what in the world is going on and that is when we decided that the world must be coming to an end. Bring it on. I’m totally fine with that.

Ronan. Somebody told me he thought you were too pure and good for this evil world. I sat with that for a while and I think I kind of agree. I don’t think such an ugly would like this would have known what to do with all of your wisdom, beauty, love, courage, strength, fearlessness, and the brains that you possessed. The world decided that you were too perfect so it had to take you back. I have schemed up so many theories about you and your life. It’s what I do at night while I sit her and think about you. Do I need a higher dose of this Ambien shit? I took it two hours ago and it’s almost 2 in the morning and nothing. Well, I hope it doesn’t have to do with the fact that I am drinking a COKE right now. My only vice in life really.

Not sleeping, mind is still racing. I don’t mind though. As long as your brothers are asleep, and my music is playing, cold Coke nearby, and you are here….. this is my heaven. Thanks for my perfect playlist on Pandora tonight. You have been playing the best songs. Everyone reminds me of you and some of them were our favorites. I hope you can still hear music. You loved it so much. I always play it twice as loud for you when I am running in hopes that you can hear it too.

Alright my little bug. Think I will cozy up with your brothers and try to get some sleep. I love you to the moon and back, Ro. Just you and me. Forever. Sweet dreams. I hope you are safe.

xoxo

 

My Ro. I miss you so.

 

 

 

 

Ronan. I think it’s been a few days since I’ve written. The days are still creeping along, ever so slowly. You’re still gone and I am still here. Barely. We are still at the beach. It’s getting closer to the time when we will leave this place, and return home. The thought of that makes my stomach turn. Back to reality. In a big way. Back to life going on, without you here. Your brothers will return to school and life will move forward. I don’t know how I am going to do this without you. It doesn’t seem possible.

I’m not really sure how the days have been going by; but they have. My memory is still foggy as I sit and try to recall how we’ve spent our time. A little time at the beach, eating out, seeing some movies, running….. I think I’ve slept a lot. Mostly just laying in bed, missing you. Not really living as I’m still not ready to. I had dinner with your daddy last night. It was a sad dinner. Everything with him is sad because we are both so sad about you. We talked about you a little, but dinner was mostly filled with silence and small talk. We saw a movie afterwords and it was really hard for us both to sit though it. My lack of concentration is distracting to everything I do, even trying to sit through a mind numbing movie. You would think things like that would be easy for me, but they are not. Even the simplest things have become difficult.

I think I’ve been avoiding phone calls. Crap. I haven’t called your Nana back in a week. Grandpa Steve has called for weeks and I haven’t returned his phone calls either. I’d really just prefer it if I weren’t here in this world anymore to worry about returning phone calls or having people worry about me. I just wish I were with you. Not my choice though, I know. I miss you more than ever.

I’m reading a new book. I like it so far, although I’m not that far into it. It’s called, “The Other Side of Sadness.” It’s basically about the way the mind works when losing a loved one. It is making sense to me as it’s more of a scientific approach to the way the mind and body work when dealing with so much pain. I think I’ll finish it in a few days, but it takes me longer to read books now. I used to fly right though them, absorbing everything easily. Now, I find myself having to go back and re read things and taking the words at a slower pace. It’s as if I’m becoming an entirely different person. Even the way I read a book is fucking different now. Just when I thought I had myself and life all figured out. Turns out, I knew nothing and I only really existed as the person I was, due to being your mom. I don’t know who I’m supposed to be without you. You were such a big reason to why I was the way I was. That person seems gone. I do get glimpses of her every once in a while. Certain people bring out parts of me that I miss so much. Macy is one of them. So are Liz and Olivia. I guess it’s because I feel so comfortable around them. One second I can be looking at Macy, and we will both be crying about you and a second later a song will come on and the next thing I know we are singing our lungs out together to an old school song, while laughing so hard we can hardly breathe. Thank god for those moments…. I need to be around people who make me laugh. Laughter really is the best medicine. For a few minutes a day, it makes me happy again.

I started Liam and Quinn in a camp over here today. They desperately need something to keep them busy, especially Quinn. He’s been really clingy to me which is understandable, but also not healthy for either of us. They both seemed to think it was o.k. and the will go back all week. I am hoping they will like it a little more tomorrow. I think it looks like a really fun camp, but I know for Quinn it’s just that he is separated from me and worries about where I am, what I’m doing, and if I’m coming back. He seems unsure about everything no matter how much I try to convince him that nothing is going to happen to me. What I really want to do is scream that he is absolutely right, that he is so fucking smart, that there are NO guarantees in life, and something could happen to me, as they could happen to any of us at any time of the day, because they can. Look at you, baby. My healthy, strong, baby boy who had this fucking cancer eating away at his body and nobody knew it. Quinn is completely right, completely intuitive, but that is not proper knowledge for an 8-year-old to know. It’s my job as his mom, to reassure him that everything is going to be o.k., when I know this in fact, could be a fucking lie. I am trying my best to protect the shred of innocence that your brothers have left. They have had to learn such a very hard lesson, one that a child should never have to learn. I have to make a choice with this lesson. I can either let it destroy them, or make them in to better human beings because of it. I am working on making them better human beings, trying to take losing you and the lessons that have come with it and turning it into something positive. It feels like such bullshit to me though because it’s not the truth. The truth is this is totally fucked and they shouldn’t have had to learn such a hard life lesson this way. All I really want to do is hide in bed, cry, and scream and let your brothers do the same. I can’t though. I have to go on, I have to give them what tiny pieces of me that I have left. I am giving them everything I have, but it is not much. They really are amazing little boys though. Such good, sweet, funny, smart, boys. Liam has the mind of a 30-year-old and Quinn and his memory that blows me away. I do find myself blown away during many points of the day over things that they say or do. Life has so quickly gotten ahead of me and it’s as if I cannot catch up, no matter how hard I try.

O.K. baby. I think I’m tired now. It’s 2:30 a.m. Ambien is kicking in. UGH. Once again I had so much more to say to you but just cannot do it tonight. Just know I miss you so much. I love you to the moon and back and hope you are safe. G’night my Ro baby. Love you forever.

xoxo

 

Love and the Locket

Ronan. It’s days like today that give me just a sliver of hope that I am going to be o.k. That being without you, won’t kill me. I know this because today….. I felt something that I haven’t don’t feel very often anymore. Almost happy.

The morning started off as usual. We woke up around 9 and Quinn had asked to have a day at the beach. We texted Auntie Karen to see if Olivia could meet us. She sent her over and we headed out to enjoy the San Diego sun. We went down to the beach and spent a couple of hours there, being lazy and then we swam in the ocean for a while. We headed up to the pool after we got tired of the sand and the flies that seemed to be everywhere. We spent the next couple of hours at the pool and Quinn and Olivia played their little hearts out. Auntie Karen joined us for a bit and we sat and talked about you. She misses you so much. It felt nice to talk about you with her though. She told me how you will always be with her. I know this. You are part of her and always will be. She will forever be your favorite crazy “old lady.” We still giggle all the time about how you would call her this.

After our pool time, we got ready for the evening. Susie drove over from Mission Beach to see us. Macy, Quinn, Susie, Olivia, Liz and I all walked into town to have dinner. All I have to say is your New York Miss Macy is like chicken noodle soup for my soul. She makes me laugh like no other. Somehow, when we were with Liz a few nights ago, Macy started talking in her fake British accent. It caused Liz and I to crack up because it came out of nowhere and it was so awful. We have been teasing her about this for days now and it has turned into a huge joke. Tonight, we spent most of the evening being loud and laughing, while we all talked in our fake British accents. It was an evening full of taking silly pictures, British accents, laughing until our sides hurt and just having wonderful, innocent, fun. Quinn was in heaven and joined in and soaked up everything that we were saying and doing.

After dinner, Susie had to head out and the rest of us headed down to watch the sunset at the beach together. As we were setting our things down, I took off the locket that Macy bought me last week. She found it at a shop in North Park while we were waiting for our table at a restaurant and fell in love with it. She bought one for herself and one for me. It’s gold, long, heavy and we talked about how we would put a beautiful picture of you in it. It is so gorgeous and has become one of my favorite pieces of jewelry. Just knowing that you are close to my heart and inside of it, brings me such a feeling of peace. I took the locket off tonight and set it in one of my shoes. I ran off and forgot about it as we spent the next couple of hours playing on the beach, doing hand stands and silly things.

As it started to get dark we decided to head up to the Hotel Del to get ice cream. As we got there, Quinn asked to go into the toy store instead. We all agreed as the line for the ice cream was really long and it was hot and stuffy in there. We played in the toy store with him for the next 30 minutes all while still talking in our very loud British accents. We were getting ready to leave and I noticed my locket was not on my neck. I immediately went to my purse to see if I had put it in there. No dice. I panicked and told the girls that I had a slight emergency as I remembered I had set the locket in my shoe at the beach. Macy and Liz stayed with Quinn and I grabbed Olivia to come with me. We rushed back to the beach and tried to retrace our steps as best we could. Luckily, we sat and played by a very big hole in the sand which is how I got us back to the spot to where we were sitting. Turns out, this hole was not as helpful as I had thought because we did set our things down kind of far away from it. I knew was at least a starting point and it was better than nothing. We started searching for my locket and I could feel myself starting to panic. It was pitch black and the beach just looked so big; like it could have swallowed us whole. That is how I felt and right as I could feel the tears to begin to pour down my cheeks, Olivia yelled, ” I found it!” I could not believe my ears. The locket was half buried in the sand, it was dark, but somehow Olivia found it. A wave of happiness washed over me. I hugged Olivia and told her thank you. That sweet girl saved me today. It was such a good day and if she would not have found my necklace, the day for me would have completely been ruined. I know it is only a material thing, but the fact that Macy bought it for the both of us, to keep you closer to our hearts means so much to me. Thank you too, Ro. For helping Olivia tonight. I know that was you. I know you wanted me to have a good day today as you know how much I need that every once in a while.

We all came back up to the condo and I headed out for a quick run. It was late, so I didn’t do my usual route of 6 miles. I did a fast 4 instead. Macy wouldn’t have it any other way because of the fact that it was so late but she knows how I am if I don’t get my run in. She let me go but not before I gave her an exact time of when I would be back. I’ve given her the name of “wife,” now. She is my surrogate Woody. I am going to be so sad when she has to leave tomorrow. I know Quinn will too. He loves her so much. We will see her next week though as she has to be in Newport for a work trip.

This morning Papa Jim sent me a picture. It was of Liam and his first Salmon that he caught. They went out fishing on Papa’s boat early this morning. What a great way to start off my day. He looked so happy and proud of his fish. I was sad that I wasn’t there to see it, but I am so thankful for the happiness that I saw in his eyes today in that picture. He will remember that for the rest of his life.

O.K. baby. I’m going to try to get some sleep. I didn’t fall asleep until 4 a.m. last night and I promised Macy I would try to get to sleep earlier tonight. Quinn is snuggled up tightly in between the two of us. I will kiss him goodnight for you. I miss you so much. Thank you for the love and laughter today. Thank you for Macy. I would have never found her if it wasn’t for you. Your little gifts are everywhere. Sweet dreams my gorgeous boy. I hope you are safe. I love you, Ronan.

xoxo

Yay! Awesome! Best 4th of July, EVER!!!! (bullshit)

 

Ronan. 4th of July is over baby. I’m still here. Quinn is sleeping in the middle of my bed and Macy is on the other side of him. I made it through today, by the skin of my teeth. I woke up this morning and went for a run with Macy. Well, kind of. She ran on the beach and a I ran along the bay. She went into town to get us coffees after and braved the madness of Coronado. I couldn’t handle it. We didn’t go to the parade this year, but Macy saw some of the action. She saw the Clonetroopers, Master Yoda, and some other Star Wars characters. I am glad I didn’t see that, as I’m sure my reaction would have been horrific. Macy would have had to carry me back home. After I finished my run, I came back upstairs to your Nana, Daddy, and brothers who had cooked breakfast. I wasn’t hungry, but ate a little fruit and some eggs just to get everyone off my case. We got showered and Quinn headed down to the beach with Nana and Macy, and I headed to the tennis courts with Liam and your daddy. It was really warm here today, but the tennis was still fun. Your brothers are both naturals. I think I need to get them signed up for lessons. I tried to act like I was really good and kept talking smack to your daddy about how I wasn’t trying, which is why I wasn’t playing well. UGH. Turns out, I am not that great at tennis. And I am pretty much good at every sport. Tennis is not one of them. I’m o.k with that. I’m happy to admit that your daddy totally kicked my butt today. It’s a fun sport though and we had a fun time playing. It meant a lot to Liam.

We headed down to the beach where we met up with The Kotaliks and 50,000 other people. The beach was packed head to toe with people everywhere. I was soon annoyed by all the drunken idiots and we packed up our things and left. No, today I was not in the mood to watch a 60-year-old man with his shirt off, drunk, and dancing to “Jessie’s Girl.” Sorry, but I just wasn’t feeling it. The whole being wasted in front of your kids thing really bothers me. I just don’t get it and it makes me sad. The same thing applies to smoking. Last night, I was waiting outside a restaurant with Macy, Liz and Heather. There was a mom crossing the street, carrying her Louis Vuitton bag, with her young kids walking beside her. She was SMOKING in front of them, just casually in the middle of Coronado. I have become so sensitive to the whole smoking thing that people CHOOSE to do; but to do it in front of your kids…. that’s just taking it to a whole new level. I made Macy chase her down just to prove that I was not just seeing things. I should have handed her one of your little bracelets and told her how you died of cancer at 3 and not by the fate of your own hands. Maybe then, she would have decided to stop smoking and maybe you would have saved her life and the life of those kids’ mommy. Because if you smoke long enough people…. pretty much sure you will die of lung cancer if you don’t die of something else first. Plus, not to mention what it does to your skin, teeth, nails, and breath. That is just foul.  And rude. And I don’t care if I’m judging because my son died of cancer and the fact that you people are here, roaming the earth, and harming your bodies, upsets me. Your body is a temple. Treat it like one! I know if Ronan would have had the chance to grow up, he would have never harmed his little body as he learned such a hard lesson as to what it means to live a healthy life. What a gift it is. He would have been so grateful and thankful for his chance to live his life. But he didn’t get a chance. He had his chance stolen away by something that was not his fault or his choice. Fuck cancer. And fuck cigarettes. And fuck drunk parents who drink in front of their kids, get wasted, and totally embarrass them in a restaurant.

I witnessed all of this stuff tonight and I had no tolerance for it. All I could think about while I tried to eat a few bites of my chicken taco at the mexican food restaurant, was how much I missed Ronan. I have the best picture of him from a couple of years ago…. 4th of July weekend where we were sitting down in the restaurant tonight and he was chowing down on a chicken taco. I wanted to be time warped back to that moment so badly. Instead, I sat and cried, watched my mom and Macy cry as the idiot family next to us continued to suck back drink after drink with their young kids around. They got really loud and the kids were mortified. I see things like this all the time now that you are gone Ronan. People who take so much for granted in life. I would have given anything to have had you in that restaurant tonight and I would not have wasted my time with you by getting drunk. I would have been the doting mom, I always was to you… to make sure you had eaten enough, and that your brothers were o.k. I would have had a hard time sitting still as you always kept me on my toes. That was so more than enough for me. I was so happy to play that role. I’m so pissed that role is gone now. I, of course get to play it with Liam and Quinn, but it’s not the same. They are independent enough that if I leave for a couple of hours they are fine with it and I am fine because I’m not worried about them. If you were here with us, you know I would have a hard time even being away for an hour from you. Because you would have only been 4 and a 4-year-old requires so much more than 8 year olds do. I missed you so much in that restaurant tonight that at one point I thought I was going to hyperventilate. We left in a hurry to get out of there and headed to meet Auntie Karen and the girls to watch the fireworks from her patio.

Coronado has the best fireworks. Remember them from a couple of years ago, Ro? You were 2 and we had the best seats in the house, right on the terrace by our condo. Tonight, the fireworks just made me sad. I found myself wondering if you could see them from where you are. Wondered who you were watching them with. I wondered who was taking care of you. Are you brushing your teeth? Are your fingernails getting clipped? What p.j.’s are you wearing?? I wonder if you are sad that you don’t have GiGi with you, because we kept it here with us. I wonder these things all the time. Who is doing MY job for you??? I don’t care who it is, because it is just wrong. Nobody should be doing these things for you except me. I need you to come back. I need you to make the most impossible thing in the world, possible. I NEED YOU BACK. We all do. Everyone is so sad, Ronan. So sad all the time. Nobody is handling this well. The only thing that will fix this is you. Somebody just needs to drop you off on our doorstep tomorrow and say they are so sorry, that this was all an experiment and that you are perfectly fine and healthy. My mind is so far gone, that I can almost make myself believe that it is a possibility that it could happen. You know what else my mind is trying to do to me??? I think the pain of having you gone is so intense that my mind is trying to trick me into thinking you never existed. That you were simply a figment of my imagination. I think my mind is going into protection mode and it is trying to make me think I made you all up. That you were never mine. That I didn’t have the most perfect little boy for almost 4 years. It almost convinced me yesterday. I had to stop and ask myself several times if you were really real. My mind is tying to make me forget you because the pain of having you gone is too much. I am aware of what it is doing, but it takes me a couple of seconds to form a memory of you to prove my mind wrong. You were real. You did exist. You were my best friend. You were my other half. You loved me. I loved you. Remember that time I was training for the NYC Marathon and you were about 2 years old?? I loved you so much and you loved me so much that we didn’t want to be separated for my Saturday morning training run of 13 miles, so I just put you in the jogger and ran with you the whole way. You were so content and happy because you knew it was me pushing you and we were together. I felt so blessed and lucky to have you with me. I’ll never forget that day… you hardly made a peep.

I had to take your daddy to the airport tonight. I was sad to drop him off. He was sad to leave us. After I dropped him, the tears started flooding down my face. I said to myself, please let a good song come on the radio so I can stop crying and blast the music. Oh hello, my little friend Ronan. Not 2 seconds later, a Prince song came on. You know, my all time favorite, artist, before he went all crazy and totally changed his music. It was an oldie but a goodie. “Erotic City.” You know I blasted that as loud as I could and laughed the whole time it was on. It could not have been a more perfect song to have come on. If it would have been something like, “Wind Beneath my Wings,” I would have totally driven my car off of the Coronado Bridge. Thanks for that today, Ro. Best song ever;)

I know I haven’t written in a few days and I’m sorry. I’ve been totally absorbed in the people around me. Your brothers, your daddy, your Nana, New York Miss Macy, Liz,  Auntie Karen, Olivia, and Liz’s friend, Heather. We have been doing things like playing tennis, having movie nights, some intense board game nights… I had a night out with Macy, Liz and Heather last night that was much needed. Innocent, girly, bonding time. We watched dolphins at the beach during sunset, had pizza, held hands, laughed, and cried from laughing so hard. These long days and night where I am all consumed with people make me exhausted by the time I get to bed. I’ve just kind of needed a break from staying up so late to write to you. I feel guilty about it too. I know h0w silly that is, but it’s though this writing to you that I still feel so connected. I feel like you know what I am saying and I don’t like the days that I don’t write and you have to miss out on what I am saying or the things I want to share with you. I know I talk to you all day in my head, but so much more comes out when I write it.

O.k. little bug. It’s 3 a.m. and I’m supposed to get up for yoga at 8 tomorrow. I told Macy tonight that I feel like my body needs an exorcism or something. Everything feels off. Everything is sore, tight, tense, and I feel like I have a ton of toxins in my body although I don’t see how that’s possible. I’ve been living off of humus and cauliflower. As well as prescription meds so maybe that could be part of it too…. I told her I think I need acupuncture or something. Everything is off. Even my run was off today. Boo for that. Tomorrow is a new day. Yoga may be the answer. We shall see, my love. Ronan. You know how much I love you. You know how much I miss you. You know how hard I am trying to be strong and it is SO hard. I will keep trying and I will never stop missing you so much that it hurts. That will last forever. I love you to the moon and back baby. I hope you are safe.

xoxo

Therapy in the form of Britney Spears

 

 

Ronan. Hi baby doll. I miss you. I fell asleep last night thinking of you and I didn’t even take my Ambien. I was so exhausted from crying, that I pretty much passed out as soon as my head hit the pillow. I was hoping to dream about you and I did in a way. The dreams I have now, that I remember, are pretty much the same theme;  just with different people involved. It’s always me talking about how you died and the people in my dream are always comforting me. I have yet to see you….. it’s always me talking about you. Last night, I had a dream I was at Dr. Campbell’s House and we were talking about you and your death. Everything in her house was white and there were animals everywhere and I remember she had really funky art everywhere. It was a very vivid dream and I remember every detail. The only thing missing in it was getting to see you. Maybe tonight you will visit me. I woke up feeling extremely hung over. I am sure this had to do with the 6 hours I spent crying over you pretty much non-stop last night. It was a release I very much needed. I didn’t want to get out of bed this morning, but I had too much to do, so I didn’t have a choice. The day went by pretty fast and I stopped by our house once to pick some things up. I went in, said hi to you, and gave you a kiss. I then returned back to the hotel where I am staying and was able to relax a little before my silly night out.

I did something tonight for the first time in a very long time. I had fun. And I didn’t feel guilty about it. I went over to Auntie Karen’s house and picked up our love, Liz, to go and do something very special to us. Something that will always be our sisterly connection and bond. Something that is a tradition to us. We went to the Britney Spears concert. We talked about you the entire ride out there. She still can’t wrap her 21-year-old mind around you being gone. I told her I know because I feel the same way. We both talked about how it feels like you weren’t even real. You were just too beautiful, too powerful, too strong, too wise, and we both said how you were unlike anyone that we had ever known on this earth. It felt good to talk to Liz about you and to listen to her talk about you to me. She loves you so much and you were crazy about her.

Once we arrived to the Jobbing Arena, we sat in the car for a while and watched all the people in their crazy outfits walk by. It was such entertainment and I finally found myself relaxing. I had mixed feelings about going tonight, but I am so glad I did. Dancing my butt off to Britney Spears’  “I’m a slave for you,” while Liz’s arm was intertwined with mine, is exactly what the doctor ordered. We danced, laughed, talked, sang, and it all felt good. I needed this tonight to remind myself that I am still alive. I’m not dead like I have felt for the longest time. Feeling alive for those 3 hours that we were there was so therapeutic. I told Liz how much you used to love Britney and how we used to dance to all of her songs together when we were doing chores around the house. She loved hearing that. After the concert was over, a huge thing of sparkly confetti was shot off into the air. It was all purple and Liz and I were covered in it and hysterical with laughter. We squeezed each other when we saw what color it was. Your favorite color, Ro. All for you:)

I’m going to get some sleep now as it is late. Thank you for showing me that it is o.k. to be happy even though I am so sad. Thank you for showing me that happiness will exist in my life once again. I can feel you pushing me with little signs here and there to make me smile. To make me feel something other than pain. I know you don’t want me hurting for the rest of my life, 24 hours a day. Thank you for the break tonight from this pain. I love you to the moon and back, baby. Sweet dreams. I hope you are safe.

xoxo

There is nothing sweeter than kissing the bald head of a cancer child

You
know how some things in life were just so meant to be? Things like
this seem to be happening to me often these days, but today it is
truer than ever. I’ve mentioned before my new friend, Macy, who did
not know me, but my blog was passed along to her through a friend.
She lives in NYC and sent me a message saying if there was anything
I needed, to please contact her. I went on Facebook, friend
requested her, and we hit it off immediately. She went to ASU as
well and graduated a year ahead of me. She is nothing short of
amazing. She came to the hospital this morning with her big bright
green eyes, coffee and bagels. She did not leave the hospital until
10:00 tonight. She stayed the entire day today, we had so much fun
getting to know each other and Ronan is in L.O.V.E. The two of us
have so much in common it is scary. I had the best day today. We
played with R, laughed, got to know each other, and Ronan
absolutely loves having her here. My little guy normally kicks
everyone out. He has loved Macy since the moment he laid eyes on
her. She helped me so much today, watched as Ronan had his broviac
dressing changed, helped me talk him though it, read him books, and
just loved on our little guy. It was a very special day to say the
least. How did I get so lucky to come across this amazing soul?? I
am amazed everyday by the blessings in my life. Love you, Macy….
can’t wait for you to move to San Fran so we can be closer to each
other!!

Ronan got his chest tube out today and everyday I am more
and more impressed by my little guy. It looked freaking painful,
and he didn’t even flinch. He just laid there and let them pull
this big tube out of the side of his abdomen. He is such an angel
with all of the poking and prodding, it is amazing to witness. Macy
was dying when he was getting his Broviac dressing changed. Our
nurse, Julia, was so good at doing it and was so gentle, but it
still hurts. He sat as still as he could and in his little voice
was saying things like, “I need a break,” “Please don’t rip my
skin!” and “Please I need a band-aid!” UGH. It kills me every time.
I about died when he was telling her not to rip his skin, but he
made sure to say please before. I mean, are you kidding me with
this kid?? All the nurses and doctors here are in love with Ronan
and cannot get over his big blue eyes and how well behaved he is.
I’m telling you, he is a brand new boy, his whole attitude is
different. He is showing cancer who is boss.

So, today we got word that the study we are on, COG, emailed Dr. Kusher to say that we needed to come home for Round 6 of chemo, otherwise we are going to be kicked off of the study we are on. I am beyond pissed. All of our doctors said it was o.k. to stay here, the doctors here are fine with it, but we are just now being told that it is not o.k., even thought he would be getting the same dose of chemo here than he would be getting a PCH. Does not make sense to me at all. I told
Dr. La Quaglia to please see if we could stay, but I have a feeling
it is out of his hands. I’m pissed. I am a girl who likes a plan
and we had a great plan in place. I wanted to get Ronan as healed
as possible and just get his chemo started pronto here and get it
done and over with. Now, I have to pack up everything, put my baby
on a germ infested flight because we didn’t have time to contact
anyone who could fly us home, risk his immune system, and
everything feels so rushed. I am beyond annoyed and I don’t know
why stupid COG is just now letting us know this. I feel very
unprepared and honestly, I am not ready to go back to Phoenix. I
was in such a funk there and the proof is in the pudding. Tricia
told me tonight that she was talking to Marisa and they have both
been saying how great I sound, how I sound like the old Maya. It’s
this city I tell ya. It has healed me a bit because everything here
has been so positive. The energy, the buzz, the doctors, the
hospital….. everything is top notch. Our doctors come by at least
twice a day, stay around forever, and the care here is amazing.
Even the lady who takes out our garbage comes walking in with a
smile and saying, “There’s my Ro baby! How you doing today,
gorgeous?” The freaking garbage lady knows Ronan’s name and is
always happy and smiling. New York has been a rebirth not only for
Ronan, but for myself as well. What if that all goes away when I
get back to Phoenix?? I know I can’t stay here forever, but I had
already prepared myself for another couple of weeks. The bottom
line is, I don’t want to rush anything with Ronan… the baby just
had a major surgery and I feel like letting him heal here is the
best thing for him. I’m letting it go… I don’t have a choice. I
can’t fight the COG people…. so whatever happens, happens and we
will make the best of it. I’ll admit, I’ve gotten spoiled here. The
care is unlike anything I’ve ever experienced and they make you
feel like you actually do matter, like you’re not just another
statistic.

Today was full of exciting things. Ronan felt great, we played a lot. I made him some homemade slime which he loved, but
did not want to touch. My hands are still purple from the food
coloring. So funny. Guess who else made it a great day?!?! My
Tricia Boo! She is here, safe and sound. I almost fell to the floor
when she walked in the room. Instead, I cried and held her for a
very long time. I’ve missed my BFF way too much. It is going to be
so great to have her here. Macy got to meet her and they totally
hit it off. Ronan was in HEAVEN. He was so adorable, just sitting
in his bed, watching us girls gossip and laugh. Tricia and I
somehow got on the subject of the movie, “The House Bunny” and we
were doing funny lines from the movie since Macy has never seen it.
I have not heard Ronan laugh in days, but tonight as we were doing
our funny lines, he was watching us and laughing so hard from his
belly. Oh, it was the sweetest sound to hear. He must think we are
nuts, but he was loving every second of it. We had so much fun
tonight. I am so thankful to have TT here. Talk about a true
friend.

My last bit of exciting news for the night is insane! A
reporter from US Weekly contacted me because they heard about Jake
Gyllenhaal’s visit to Sloan Kettering though my blog! They want to
talk to me more about it and the girl was so touched by Ronan’s
story, she said to please let her know if there is anything they
can do. I emailed her back and told her I would be happy to talk to
her, but I was requesting two things. 1) For her to please get
Ronan’s website in US Weekly… anywhere. I told her how important
it is to raise awareness for what so many children are going
through. And 2) I asked her to please get my Liz a date with Jake!
I was half joking on the second request but thought I’d put it out
there. She sent me an email saying, Of course she would (not sure
if she was talking about the website thing or the date for Liz) but
regardless, she is calling me tomorrow. I’m going to try my best to
get her to help me spread the word on Ronan. And I only have the
nicest things to say about meeting Jake. He was a gem. I’m so going
to try to get him to take on childhood cancer as his charity. I
know he does a lot of things for animals, which is so amazing….
but these kids need a voice and I feel like he has the heart to do
it. Overload tonight. I had so much to share and could keep going
but my eyes are drifting off. Tonight, I am so thankful and so
blessed to be surrounded by such beauty. Ronan shows me everyday
what it truly means to be brave and strong. He is such an old soul.
My very own Master Yoda:) Sweetest dreams, friends. xoxo Ronan and
Macy!!

The most wonderful time of the year

Christmas in New York truly is magical, even under our circumstances. Today, we spent the morning hanging out at the Ronald McDonald House, just enjoying the activities that they had going on. Around one, I skipped out, hailed a cab, and went over to pick up Liz so we could do a little holiday shopping. I had yet to get Wood a thing and talk about waiting until the last minute. Today really was the only free day I’ve had alone to do his shopping. Liz and I walked the streets of New York for 5 hours straight. It was busy, chaotic, and so much fun. We had the best time together and I feel so lucky to have her in my life. She is such an amazing young lady and truly is like a sister to me. The streets and shops were full of people everywhere and I could practically feel the city buzzing with the excitement of the holidays. I loved every second of being right in the middle of it. Today, I enjoyed a day of escaping our reality for a few hours…. even though Liz and I talked about Ronan a lot, we spent most of our day just enjoying our surroundings. It was a wonderful Christmas Eve day. Tonight, everyone came over to the Ronald McDonald House and we hung out. Ronan had a couple of meltdowns… he’s tired tonight; but happy. Liam and Quinn have been great and we have really been enjoying them. They love staying here with us. RMH does such an amazing job of having fun activities for the kids to do and everyday there is something going on. We feel so blessed to be staying here for such a long amount of time. It is a very safe, fun, positive, environment. I just know Quinn and Liam are going to look back at this Christmas and remember it as being a fun time, full of lots of laughter and love.

I wonder what you are all up to. I wonder if Christmas means more to you this year? It does to me. All I want for Christmas is for my family to be healed, my friendships to be stronger, and to have Ronan healthy. It was so hard for me to see his tumor on the scan yesterday. It made everything so real and seeing the very first scan, when the tumor was everywhere, took my breath away. It was so huge before. I just don’t know how that thing was growing in my baby and we had no idea. His stomach did not protrude at all…. he acted and felt fine. The doctors could not even feel it when they pressed on his stomach, yet it was everywhere. Such a scary thing. It it wouldn’t have been for his little left eye, we would have never known what was going on. I am thankful every single day that it metastasized up into the orbit of his eye… otherwise whose knows when or if we would have caught this.

Tonight, Karen, Olivia, and Liz went to church here at 11 p.m. I wanted to go with them, but felt like I needed to be with my boys. Karen said she was going to pray extra hard for Ronan, for me. What a beautiful gift they have given me this Christmas. I couldn’t ask for more. The thought of all 3 of those beautiful souls, sitting in a church in NYC, praying for us brings tears to my eyes. It’s one of the best gifts I’ve ever been given. I know he is going to be healed, I know he is going to grow up and be the most amazing man, there are too many people thinking and praying for it to go any other way. Too much love surrounds this little boy of ours.

This Christmas, I would like to say thank you to all of you and leave you with a little toast. To all of my family, friends, strangers, near and far…… thank you for thinking of Ronan and following his journey and believing in him. A toast to all of you. Cheers!

To Nearest

To Dearest

To The Truest

To The One’s Who’ve Been There

To The One’s Who Who’ll Be There

To Dropping Everything

To Honesty

To NO Judgements

To No Doubts

To Loyalty

To Trust

To Humbleness

To Knowing What Matters Most

To Having Our Back

To Asking For Nothing In Return

To Accepting

To Loving

To Kindness

To Living Your LIfe Full of Being Selfless

To All Of You, Who Know This Is True, And Know It Is Your Soul We See Shining Through.

Happiest Holidays!!!!!!

HOPE.LOVE.FAITH

Tomorrow is a big day. Huge.  I should be sleeping….but I am so nervous I can’t. We check in to Sloan at 9:30 and Ronan will his anesthesia, they will do bone aspirations on the front and back of him, and then the CT Scan. Please continue to pray and send great thoughts his way. I KNOW the scans are going to come back with amazing results. I have faith that what we are doing is working and Ronan is so strong; he is going to beat this disease and we will never look back.

Tonight, I took a look at my family and stepped back a bit. I know this is my blog and I sit here and talk about how hard this is on me….. but I hope you all know that I know this is hard on our entire family. Sometimes I feel selfish for going on and on about me…. but to talk about how badly this is hurting everyone is too much for me. It is evident that everyone is hurting and suffering from this. It breaks my heart to watch my family have to go through this and see how scared and sad they are. Everyone puts on such a brave face but as I sit back and watch certain situations and observe… it’s like a slap in the face. I wish I could take away everyone’s pain and sadness. I would give anything to just have my 3 boys, home with Woody and I, under the same roof with everyone healthy. I am hurting; but there are so many other people who are hurting too. I am trying my best to be a good wife, mom, daughter, friend, etc….. Sometimes I don’t know which direction to turn and it is all overwhelming. I’ve been doing a lot of talking to Quinn; I miss Liam who has been staying with Mimi and Papa. I HATE that because of this disease, my 3 little guys can’t be together like they used to be. Tonight, I am just sad. But tomorrow, I will be brave.

 

I love you all. A special I love you tonight to one of my favorites, Liz. You know why; and you are the truest of the true. Please pray extra hard tonight and tomorrow for our little Rockstar. I will update you when I know something. Thank you all.