In the words of Eddie Vedder…. I’m still alive. But do I deserve to be? Is that the question? If so, who answers…. who answers??

 

 

Ronan. I feel like I have run a marathon. I am emotionally beat, but my mind refuses to be still. I need you here. I need to tuck you in, to kiss you goodnight, to tell you I love you and to hear you tell me you love me back. I miss you so much that sometimes I think this pain might really kill me. I’m not that lucky because it never does. I just continue to feel like I am being stabbed over and over again. It is an endless, vicious cycle of pain and misery. It hurts to even breathe. But I’ve been productive. I spent the weekend, throwing myself into work for your foundation. I have so many ideas. I have come up with a new dream and vision. It’s HUGE. I think it’s slowly been in the back of my mind but it just become clear to me a few days ago, what it is that I think needs to be done. Not very many people know about it. I’ve only told a few as I think I need to keep this one to myself for a while, until I can get a handle on how this plan of mine, can actually become a reality. It could change so many things. It could help so many people. It’s just one of my dreams for this disease, just one of my many ideas. I’ve obsessed over it for days now. But it’s like slowly putting a puzzle into place. The pieces have to fit just right and it is not something that can be rushed. It has to be done just right, so eventually all the pieces will fit into place. It’s time to start working on the pieces baby. One by one.

So, I may be out of control with our little Taco place. I spent 3 days in a row there. 1 lunch, 1 dinner, and one very productive foundation work day. Turns out, you can hijack the wi-fi from the big restaurant across the street. SCORE for Team Ronan! I’m going to have to start up a Taco/Mexican Coke fund. I spent last night there with your fairy RoMo and Margarita. It was kind of a last-minute thing from your RoMo as she was like, “Hey, I’m thinking of changing my flight to stay an extra day!” My response was please do so, that way we can go and have more chips and salsa. So we did and I hijacked Margarita to come along with me. BEST NIGHT EVER. Is it bad, that my best nights ever now revolve around everything you?? Because to me, it means the world to me the way I get to sit around and throw out these ideas to people who care so much that they will give up their Saturday night to figure out what it is that we need to do to make these really, really great things happen?? Do you know what I was told last night?? That the word no, was not acceptable. That there is always a way to work around things to make things happen. I LOVE that. I need less no’s and more let’s find a way to fucking do this! Because so much needs to be done in a big way for pediatric cancer, to change things. Last night was so inspiring, so powerful, so moving. At one point, your RoMo just looked at me and goes, “I can’t explain this, Maya, because there is no explaining it. Ronan is changing everything. There is a shift and a movement happening. No other “sick,” child has had an effect on people like this.” I just quietly listened and told her I knew. We all know that this is beyond something bigger than us. I know that this is all due to you, your beauty our love, and your wild and free ways. It is too beautiful to try to explain with words. Let’s explain them with the huge things we are going to do in this world instead. We’ve got a pretty kick ass list of names that we are going to try to recruit to help us. It’s time for this world of ignoring childhood cancer, to change. Enough is enough. You should not have died. Let’s try to help other little one’s so that one day, they won’t have to either. I don’t think that’s too big of a job, do you? I know you don’t, otherwise you would not be pushing me forward to do this.

Today, I went back to our little Taco Shop with my imaginary board member that does not exist. We sat, went over the huge to do list. She gave up her Sunday, for me, for you, for us. What do I even say to that? Nothing. Because she does not want the huge fuss made about her, that I want to make. She just wants to be behind the scenes, helping us out in her quiet Wizard of Oz way. She is the freaking Wizard of Oz in a way that leaves me speechless. Speechless but tearful and thankful. Thanks, you know who you freaking are. Thanks for everything but most of all for looking at me today and going, “We can do this. This is easy.” Thanks for believing in me and Ro. Thanks for being just a kind-hearted, secret badass chick in general. You are quite simply, are RoMazing:) Oh, and little LoRo…. my other little amazing dolly who has worked so hard on the RoLove that she is creating….. I need to tell you thank you tonight. For not being a normal, 17-year-old girl. For being different in such a way that you have set the bar so high, for other girls your age. Your heart and the love that you have for Ronan and all these other cancer babes, is so beautiful and you are such a gem. Thank you for all of your hard work and love. I’m so thankful for you.

Alright, my spicy little monkey. It’s kind of late. My eyes are burning and I think I have to try to sleep. Not just for a few hours. Please. I just want some normal sleep. Not sleep which now seems to come in the form of fall asleep for a couple of hours and wake up to Ronan is dead. Ronan is gone. Nothing in the world is right so screaming voices take over in my head, instead. I’m sleeping in your bed tonight. Maybe this will help. It seemed to be working for a while. I hope it will work, tonight. I love you. I’m sorry. I miss you so much. I hope you are safe. G’night baby doll.

Whipped Cream Kisses for Dessert

Ro baby. What in the world happened last night and today that I can exist on only 4 hours of sleep, like it’s no big deal? Oh, I know….your death. This coming from a girl who used to easily sleep 8 to 10 hours a night. Sometimes 12. I was totally that girl, that mom, that me. Not anymore. The peacefulness of sleep is hard to come by, especially on nights like last night where nothing out of the ordinary happens; just reality. Last night I fought sleep until 6 a.m. I did a lot of talking to myself, played a lot of musical beds, sent some emails, posted some stuff on FB about zombies and how 4 a.m. sucks. 4 a.m. sucks, but 6 a.m. when the birds start to chirp, is even worse. 6 a.m. and you know enough is enough, so you pop an Ambien because nothing else works. I slept from about 6:20-10 a.m. I got up, showered and my mind was racing with things that I needed to do, for your foundation. So much stuff that it was making my head spin. I went to my little Starbucks office and worked away not even feeling the hangover from the lack of sleep. I was really productive during my hours at the Starbucks office, despite the extra annoying, really bad soft porn music that blared from the speakers. I got recognized by a RoFan of yours which I was really surprised by because I only go to this Starbucks for the reason that I won’t run into anyone. It’s my secret Starbucks office where nobody knows my name. Or so I thought. Today, this girl was sitting by me for a while with a boyfriend or boy friend of hers. They got up and left and I was so into what I was doing, that I hardly noticed. A minute later I noticed the girl as she came walking back through the doors and headed straight for me. I looked up just as her soft eyes asked if I was Maya. I smiled and said yes. She told me she reads this blog. I asked her how long she had been reading it for and how she found out about you. She said she heard about you when we were on Channel 12, about needing an airplane to get you to New York. Whoa. What a sweet, loyal dolly. She’s been reading for a long time. She told me how sorry she was. I tried not to get choked up as I looked into the eyes of this girl who I swear could have been 17. I gave her a bunch of your bracelets and RoCards. She seemed so nervous and shy. I told her thanks for saying hello. I meant it. She made me smile.

Margarita stopped by the F U Cancer Starbucks office to say hi and help me with some things. Turns out, by the time she arrived my brain had turned to mush. I’m pretty sure she was looking into the eyes of a zombie but she still managed to make me laugh. A real laugh too which only a few people in my life seem to be able to make me do anymore. She being one of them. I had filled out an application for something (which will remain TOP SECRET classified information until more comes of it) and my application totally sucked balls. I filled it out last night during my insomnia marathon. Margarita looked it over and goes, “Yeah… I think we can do better than this.” HA! There is nothing I appreciate more than someone who can tell it like it is. She may have saved our secret mission today because if I would have actually sent in what I had filled out, I can guarantee you it would have went right into some fancy NYC recycling bin. Thanks, Rita. Rawr! You are a RoSaver! The rest of the day/evening was spent with your Luke, Daddy and brothers. We all went to the batting cages and hit some balls. I tried to enjoy it but as you know, when going to places like this I am constantly looking over my shoulder for you to appear. I don’t think I’ll ever stop looking for you. I watched your brothers as they ran around full of so much love and life, just like they should be. I closed my eyes and imagined you were there with us and for a split second, everything in the world was perfect. Simple perfection was ripped to shreds by the reality of Hell when the giggles of a child nearby forced me to open my eyes, just to make sure it wasn’t you. It wasn’t. Fucking fuck.

These are the things I’ve seen in the past 24 hours that I just can’t deal with because it is as if salt is being poured into an open wound. The real world. The real, non bereaved, I didn’t lose a Ronan and you did world. A lunch in the middle of the day at your favorite restaurant. A lunch with the best company in the world. A new friend and an even newer friend on the most delicious day (sunny. breezy. chilly. not rainy. sunny was delicious before you died) We sat outside as the breeze whispered in my ear and I swear I could hear your voice. My eyes gazed up from the menu only to fall on the table nearby. A mom. A dad. A little boy, around 3. A new baby. The little boy, roams carelessly around the tables. Almost in a mocking sort of way that only a grieving mother would feel. The parents look on, and drink their bottle of wine in the middle of the day. A whole big bottle of red wine. Another one is ordered. They pay no attention to the little boy as he wanders off, far off. Not far enough to get swiped up, but maybe….. it could happen. But the mom and the dad are so calm, so clueless, so free that they don’t mind. They trust in the world that the fates will be kind as they let their child wander about. They look as if they don’t have a care in the world and their big bubble looks oh so delicious. I watch with my blood-shot eyes, worrying……..over what? I’m pretty sure the cancer grim reaper does not live at Chelsea’s Kitchen. Hey! That’s too far! Hey! He’s talking to strangers. But the strangers just smile and laugh. He’s so cute they say. The mom and the dad don’t really reply, they look up and smile instead at the strangers almost in a conceited sort of way. They gaze into each others eyes as they’ve just had the best sex of their lives and now they are going to drink more wine and do it again. Their children certainly don’t cramp their style. They are so mellow and laid back. I’m pretty sure the VW bus strapped with surfboards on the hood and the California license plates, belonged to them. They continue to drink the wine. The little boy returns to the table. The mom orders dessert. The little boy goes back up in his high chair. So high. I watch as he eats the whipped cream with his mama. I watch her kiss it off of his lips, they way I used to kiss it off of yours. She asks for more wine. She is tiny, I think to myself. How can she drink so much wine? Don’t they have to drive home? Oh, how I hope they walked. But even that scares me. They have a brand new little baby, too. I’m confused. Wine. Toddler. Baby. Middle of the day. Smiles all around. Is this really real? Who lives this reality? It certainly isn’t mine. Is it everyone else’s, but mine? The little boy finishes his desert. He isn’t strapped into his high chair. He stands up in it and nobody cares. Or maybe it is that thing they seem to have going on where they trust in the world so much so they just know everything will be o.k. What’s that like? I can’t remember. He stands up and I start to count. 1,2,3,4,5…………. Hey! How is that allowed? He could fall! 45 seconds later and he almost does. But his mama swoops in to catch him right before the waitress does. The waitress gives a nervous giggle. The mom does not. She giggles as if something was truly funny. How is she so carefree, I wonder? Must be the flower in her hair. The long, flowy childlike hair. My lunch dates watch this interaction as well…. but not as closely as I do. I am borderline, obsessed. I would have never been so carefree with Ronan in a restaurant, I think to myself. I would have never let him wander without keeping my eye on him every single second. I would have never let him stand up in a high chair for 45 seconds only to catch him right before he fell. I would have never drank 2 bottles of wine, in the middle of the day. Or ever. What’s their secret? Because clearly they have the key to happiness. It was all over their smirky faces that were saying to me, you have a dead child and we do not! Sucks to be you! Or maybe they really do but I’ll never know. I know I cannot truly know the story of this family by my 60 minute observation. But in my mind, the story that I had made up in my head, was too much to take. After the almost high chair falling incident, I looked up at my 2 new friends like a deer in headlights. I’ve gotta go. This is giving me way too much anxiety. They both knew it and we quickly up and bolted. After paying, of course. Thanks, Rita;) I left your little restaurant, and that family behind yesterday. But not without feeling the stings from the open salt wound that is now my heart.

That’s my story tonight baby doll. It’s late. I’m tired but not really. I will try to sleep. I love you so much. I miss you. I hope you are safe. Sweet dreams. G’nite.

xoxo

New York Miss Macy and the Candy Store Girl

Ronan. Hi my baby. Nighttime is here. The stars are out. Everyone is asleep. Slumber party in my bed. I hate the time between now, and when I actually fall asleep. It’s too quiet, too calm, too still,  and too lonely without you. It’s the time when my heart feels the heaviest and my mind is so restless. Thoughts of you being gone fill my head and cannot be stopped. It’s as if my mind is screaming that you are gone, but my heart refuses to believe it. I cannot fully accept what is the truth, as true as it is. The magnitude of life without you is too much to take. This is a big part of why I write to you. I write until I can take no more, until I am so tired, that my mind and body finally give in and sleep comes to me. I have no idea how I am getting through this thing called life, especially with the lack of sleep that now consumes me. Somehow, I just keep on going, trying to do my best to ignore everything that is telling me to stop. I want so badly to stop being strong. I would give anything to have you back and to float through life, without knowing this pain. Who the fuck decided this was my lot in life? I want a refund.

All I can say is thank god for New York Miss Macy. I was this close to jumping off our balcony today. Ok…. not really, but she could not have come at a better time. Your brothers and I need a distraction and some laughs. She provided both of those things today. As soon as she arrived, there were hugs all around. We got her settled in and decided to walk to go and get some lunch. We took her to Burger Lounge, where and we all had lunch. Afterwords, we stopped at the candy store to get some treats. The same candy store that has toy pistols and rifles handing on the walls. All I wanted was for you to be with me so I could buy you one. I imagined you running down the street with us, shooting everyone. I stared at them for a minute and caught myself starting to get choked up. I am so glad for what happened next as it has kept me giggling all night. I watched this scene play out like a movie. Let’s call it: “New York Miss Macy and the Candy Store Girl.” Ready……scene….. ACTION!

– Maya goes to the register to pay for her candy and the grouchy teenaged girl working, gives her the total bill with a scowl on her face. Maya watches as New York Miss Macy is standing next to her and takes a couple of pieces of candy out of her bag, before paying, and starts to eat them. Maya watches as the Candy Store girls eyes glance over to New York Miss Macy and a look of annoyance comes over her face. Maya thinks to herself, “Is the Candy Store girl really getting mad because Macy is eating a few pieces of her bulk candy before she pays??” She decides it is only her imagination as isn’t it a given that you munch on a few pieces of candy before you pay when you go into a  bulk candy store?? Not 3 seconds later, the Candy Store girl looks at Macy and goes, “I’m going to actually need you to PAY for that candy, BEFORE you eat it.” Macy, whom is clueless as to what she was even doing because it is just second nature, looks up and goes, “Um…. what?? Yeah, o.k.” Maya is trying to hide her laugher. Macy pays and we scurried out of the store. As soon as we exited, we burst into laughter. Macy goes, “Wait, did I really just get reprimanded for eating a few pieces of my candy by a 15-year-old girl? What is she, the candy police???” This is so something that would only happen to Macy. It made for a lot of laughs tonight.

After our candy store incident, we continued on our walk back to our condo. As we were all 4 walking back, we were looking out at the ocean. Dolphins appeared. We stopped to watch and ended up climbing down some rocks to sit on the beach for a while. We watched the dolphins and played in the sand and water. We ended up having a sand and water fight because sometimes in life, it just makes sense to do silly things like that. It made perfect sense tonight. You would have loved every second of it. At one point, Liam and Quinn were in the distance, playing, just the two of them. It was surreal to watch and I felt as though I was having an out-of-body experience. I will never get used to it just being the two of them, without you injected in the middle. Nothing is right anymore and nothing makes sense. As we were walking back, I got a text from Danielle. It was if she had read my mind from a few minutes earlier as her wording was almost eerie. Something along the lines of how she wants you back so badly for me that it hurts. How you are the light, the finishing touch, the pistol that keeps me alive. She then ended it with, “Fuck. I hate life.” Danielle is one of those people in my life who just gets it. She gets everything. She has a lifeline to my soul and to yours. Her words brought me comfort, for as sad as they may be; they are always true and real. She takes the time to really sit and think about all of this that we are going through and when we do talk about it, I feel as if she is living inside my mind because she says everything that I am thinking. We have a very strong spiritual connection. Thanks, D. Miss you much.

Now that Macy is here, I was able to get in my run tonight. I was totally unmotivated and dreading it. I almost didn’t go. The little voice in the back of my head would not have shut up if I didn’t. I knew this so I headed out the door and ran a fast 6 miles. It actually ended up being a really good run. I’ve missed the pain and release of running these past few days. I broke my record on my NIKE iPhone app for my fastest 10k. Guess I was feeling it after all. I returned feeling better and hopped in the shower before we started movie night. The boys and I decided that we would introduce Macy to one of our favorite movies, Ro. “Zombieland.” She had never seen it and it had her laughing within seconds of turning it on. The more I watch that movie, the more I love it. Seriously, Top 10 favorite movies of all time for me. She loved it too. I knew that during all that laugher, one thing was going to get to her. That one line that will forever cut like a knife. “Take away a man’s son, and you’ve truly given him nothing left to lose.” I watched her wipe the tears from her eyes. I’ve decided that I would like to live in Zombieland because this normal life without you is for the birds. If I have to live without you, I would rather do it by being a badass and killing Zombies than living in this painful life that now exists. At least I would have a lot of things to take my anger out on, besides myself and the nobody who answers to me. The nobody that is to blame, the invisible being that took you away. Somebody should have to answer to me and to explain why. I hate that nobody can give me a reason for this because there should be a reason. If you had to be taken away, I want to know why. And I don’t want to spend the rest of my life trying to figure out why this happened to you, but I don’t know how I can ever come to peace with any of this unless I have somewhat of an answer. Gee, fuckwad. Thanks for the fucking journey that I now get to figure out in life. Thanks for taking my beautiful life and smashing it into a million pieces. I HATE YOU.

But I love you, Ro. I love you to the moon and back. I am still here, despite my pleas to you. I’ll stay here for as long as you want me to be. I know I have to help change the way of this disease for you. Everything I do in my life will be for you. Everything I have done in my life since the birth of you and your brothers, has always been done by putting you all first. I was so happy to do this. It brought me such happiness. Now, I have to go on and continue to do what I have been doing for so long, which is being a mom; without you. I will continue to do this but I will never stop feeling like I have a limb missing. As well as a big chunk of my heart. This is permanent. These scars are not going anywhere. I don’t know how people say they fade either. If anything, I think they just get worse. They are for me anyway. To each his own.

I love you baby. I love you so, so much. I miss you every second of the day. I hope you are safe.

xoxo

                             Family Forever

New York Miss Macy, Quinny, Mama Maya, and Li Li

A little hummingbird told me……

Ronan. You should have been here today with us. I forced myself to have a better day today. Forced myself up out of bed, out into the delicious San Diego sunshine, out on to the beach; armed with my surfboard. I knew the only way I was going to get though this day today, was by getting my ass kicked in the ocean. That’s precisely what I did. I welcomed the angry ocean with open arms as I tried my best to get up on my board; only to miss the curl of the wave over and over again. To be ripped under the water where the salt water stung my eyes and I choked on the bitter taste of the sea. Happiness. Torture. Hurt. Pain. I felt it today out there and I wish I could say it quenched my thirst for what I am missing in life now. But it didn’t. Not even close. But I knew if I didn’t get out, and try to live….. well, that’s not going to be good for anyone. And as I’ve said before, this is not just about me. As much as I selfishly wish it were sometimes. There are other people involved. Other little people whom I have to take care of.

After I surfed for a while, Quinn came out to join me. I put him on my board and pushed him out past the waves. I carried him out as far as I could go and turned him around to wait for the right wave to come. He missed the first one, and toppled under the water. We tried again and this time, he got up easily and rode the wave all the way into the shore. Liam came out as well just to splash around. We played out in the ocean for a while until your daddy pointed out the dead Sting Ray on the shore. We decided to come in after that. I hope I never meet one of those guys in the ocean. They do not look like somebody I would like to be friends with.  After the beach, we went up to the pool and enjoyed the rest of the summer day.

Your daddy had to head back to AZ tonight for the rest of the week. We went out for dinner and dropped him off at the airport. We headed back to Coronado and decided to walk to the Hotel Del for ice cream. Your brothers seem happy. It’s strange to watch just the two of them interact now and how their relationship is changing. It’s as if they have to get to know each other all over again. You were such a big part of them. It’s almost as if you were such a strong force between them, as you had such a different relationships with both of them. Everything you brought into this world was unique and special and that includes the bond you had with your brothers. We all feel lost and awkward. It’s hard to sit back and watch all of this. It was hard for me to take your brothers for ice cream at The Del tonight. I know you know this. I know you can feel me because at my saddest point tonight, as the sun was setting on our way back from ice cream, I looked up and there was a little hummingbird. Flying right in front of us. Quinn and Liam both started laughing and chased it. It kept fluttering away, but only to turn right back to us again. It landed on a tree right in front of The Shores and it stood still on a branch as we came over to look at it. It stood still for a couple of minutes and Quinn kept insisting that I take a picture of it. I took one on my iphone for him. This little hummingbird didn’t move the entire time we watched it. We finally walked away, and I told the little hummingbird, “Bye Ronan.” Your brothers said, “Bye, Ro,” as well. It was a sweet moment that reminds me as lonely, lost, and scared as I feel without you; that I am never truly alone.

I spent the rest of the night playing with your brothers. I caught up on a couple of phone calls that were way overdue. This whole “hiding,” thing of mine that I like to do, is hard on my friendships. Not hard in the way that I worry about losing my friends; because the one’s that have stuck around are in it for the long haul. Forever. It’s hard in the respect that I just truly miss them and the simpleness that our friendships used to consist of. Nothing is simple anymore. I’m complex and any illusions about life being easy or fair, has been ruined for them. It must be hard to be on the other side of this and to kind of be sitting back on the sidelines; watching. Watching and waiting because you don’t want to overstep your boundaries. I am aware of my little angels surrounding me though. I know they are all still there, and giving me time to grieve. I am so thankful for that. When the time is right, I will see my friends again and all of their beautiful smiles that I miss so much. I am forever and eternally grateful and thankful for the love of my friends. I am a very lucky girl in regards to them.

We finished up our night, just the 3 of us by watching a movie together. Your daddy will not be back here all week. I’ve got to find some things to do to keep everyone entertained and happy. I’ve got to be a mom, to your brothers, like I used to be without the help of anyone else. I haven’t really done this since you were diagnosed almost a year ago. It’s going to be a challenge to say the least. The things that used to come so effortlessly to me, are now the most difficult. Being a mom. Being a wife. Just being Maya. Adios to that Maya. She no longer exists. I don’t know who I am without you. I hope to find my way back someday, but as of now, I am completely lost. At the end of the day, I am just happy that I am one day closer to being reunited with you. I miss you so much.

That’s all tonight my baby doll. I’ve given up on this trying to sleep without the help of my Ambien experiment as well. The pain of having to survive the nights of not sleeping, but instead lying in bed and feeling as if every part of me is burning with pain is not something I am capable of handling. Bring on the Ambien.

I love you. To the moon and back forever and ever. Sweet dreams, my love. I hope you are safe.

xoxo