An L.A. Adventure

Ronan. Hi. Where are you? How are you not here, snuggling with me? Somedays, I can hang out in your room and not even cry. I then think to myself, what is wrong with you? How can you be in here, and not have a full on breakdown? The love of your life is dead and he is never coming back. You are in his room with all of his things and you can sit in here, and be alright with this? Is life moving on for you, too? The way is has for everyone else? Somedays it feels this way and it is like nails on chalkboard. I don’t want my life to move on. I don’t want my life to be alright without you. That to me is so wrong. But what choice do I have? I have to have alright days once in a while in order to survive this, right? I deserve to have alright days, too. I still hate them, but I manage to get through them. Somedays I even laugh and smile. Not often, but I don’t seem to cry as much anymore. I used to cry, every single day, 10 times a day. Now the crying is less. It is not because I miss you any less but maybe because I am just so used to this pain, that I am living with it a little better.

Your daddy and I had a trip planned to L.A. this week to go to a fundraiser of some friends of ours. Our week was super busy and your daddy has been slammed at work. I have been so exhausted that I have been trying to keep up with things, but all I can really seem to do, is sleep. Your daddy looked at me on Tuesday night and said, “You sure you’re up for this? The drive to L.A. for this quick trip?” I thought about it for a few minutes. I told him I didn’t care how tired or how much I was throwing up. We were going. That our friends were counting on us and we were not going to let them down. I may have thrown in plus, “Robyn bought all this really cool stuff, to do our nails with.” He looked at me, smiled and said alright. We left Wednesday evening at 9:30 p.m. Your daddy was writing motions at his office up until then. We hopped in  his car and I let him drive us for 4 hours, after he had worked about 40 hours in 3 days. It was around 1 in the morning when he finally looked at me and said, “It’s 1 a.m. we’ve still got two hours ahead of us. Let’s find a hotel and stay the night.” This was not part of our plan. “No hotel,” I said. “Pull over, I’ll drive.” “Maya, you are pregnant and tired. You are not driving.” I, of course argued with him. “I am totally fine. If I get tired, I promise I’ll tell you.” He pulled over. Into the drivers seat I went, with the music happily blaring. I love long road trips. They always give me a lot of time to think. And think I did.

I got us to Charisma’s house around 3 a.m. I looked at your daddy and said, “Please don’t try to talk me out of doing something, ever again. We are here, safe and sound.” Charisma is away shooting her T.V. show and was sweet enough to let us stay at her place, which just happened to be about 5 minutes away from the venue of the event we were going to. We crashed out pretty hard until 9 a.m. that next day. Dr. Sholler flew into town on the day of the event, that Thursday, and we picked her up at the airport. It’s always a treat to spend time with her. We spend much of the evening, catching up with her and everything that we/she has going on. You know the question I asked her, of course. How could I not?

“You know what I’m going to ask you. What if this baby, has Neuroblastoma as well. I am so scared about that.”

She looked at me in that thoughtful way that she always does. I could literally see her thinking, before speaking, which is something that means so much to me.

“Maya. This baby is not going to have Neuroblastoma. That is unheard of. But I know what you are thinking… that lighting has already struck once. I understand your thought process, but I am telling you, this baby is going to be fine.

I was trying my hardest not to throw my head down on the table and cry. I let myself trust in her words. I cannot believe she never had the chance to meet you are help you. She would have been our best shot at this beast. I know this with all of my heart. That woman has something so different about her, that I will spend the rest of my life supporting her, helping her, and making all of her dreams come true. I know she is going to be the one, to fix this disease. I can feel it in my bones. I believe with my whole heart that she is truly in this, to cure these kids. This is not about money to her. This is not about anything other then her wanting to save these kids. She cares so much. You would not have been just another lab rat to her. You would not have died in the name of research with her. You would not have been just another number and we would not have been tossed out on the streets, to never been checked on again. Fucking assholes.

We went to the event to support our friends. They did an awesome job and I am so proud of them. We are all in this, together. That’s how things will get done. That’s how things will change. It was hard for me to be at this event, I won’t lie. I spent a lot of the night, wiping away the tears. I wished this wasn’t Robyn and Kyle’s story, as much as I wish it wasn’t ours. They are hands down, one of the most amazing couples I’ve ever met in my life. We share a special awful bond that nobody should ever share. They will be our forever friends and you and Ezra, are going to help us do amazing things. I know this, no matter how many people doubt me. No matter how many people tell me, I’m crazy, this can’t be done, it’s too hard. It can be done and it will be done. You fucking died. Kids are fucking dying everyday from childhood cancer. You fought with everything you had to stay here. So, please, tell me again how nothing will change how this world is too hard to fix how nobody will believe in this or trust this or can do this. Tell me that again and I will say to you what I tell myself over and over and over every single day. I have to live every single day without Ronan. If I can do that, I can achieve anything I set my mind to. I know what I am doing. I have a very specific plan and it will get done. I can change this world. It will change. If you knew my son, you would know this, too. I believe in the power of our love. It is the power of our love, that keeps me from doubting anything, Ronan. A love so powerful that the unthinkable can and will be done. I know this in my heart. I know this in my soul. I know this with everything I am.

We drove home Friday just in time to meet some people for dinner at Chelsea’s Kitchen. Some wonderful people who share our same thoughts and visions. Some wonderful people who believe in you and this cause, as much as I do. That’s all I need, Ro. Is people that believe. I spent much of the evening going over our master plan. I spent much of the evening, listening to the advice and help that I so desperately need. I spent much of the evening, feeling thankful for the people that you are putting in our path. I don’t believe in coincidences. This is all you, working away with only the BEST people to help us on this adventure of ours. Thank you for that.

I love you. I miss you. I hope you are safe. G’nite my spicy monkey boy.

xoxo

A barefoot hike and a spicy little dragon

Ronan. Every single morning I wake up, the first thing I do is miss you. I will never be the mama that wakes up with a fresh set of eyes. My eyes are always sad, mostly bloodshot and my heart is always heavy. Every single morning, I have to make a choice to get out of bed. It’s a choice because a lot of days, I do not want to wake up at all. After a very heavily induced Ambien coma sleep last night (yeah, I totally went there), I woke up this morning saying all kinds of shit in my head. You HAVE to get up today. You HAVE to make 2 decisions today. You HAVE to check 2 things off of your list. You have to start making some decisions about Ronan’s death day/birthday that is approaching. I get up. I make my way to your brothers room the same way I do every morning. I walk past your room. My stomach drops that you are not in there. Your bed is neatly made. I go into Liam and Quinn’s bedroom. I open their blinds. “Good morning, boys! Rise and shine!” I turn on their shower. I text back and forth with Rita. We make some plans for tonight, as a family. YAY! I get to see her little dragon! I pack your brothers lunches and drop them off at school. “Bye boys! Have the best day! Try your hardest! Be nice! Be kind! Help others! But don’t take anyone’s crap! I love you!”

I decide to make a run to Target for a couple of things and one of them includes a couple of little trucks for my little dragon friend of mine. I get so excited about seeing him. I love his little raspy voice, the way he says my name over and over, just to say it, and the way I get to hear him call out to Rita, “Mama,” because that is what he calls her. I am a sucker for that mama word. I am a sucker for the way he sometimes talks about himself in 3rd person. I am a sucker for this little dragon friend of mine who makes me want another baby/child so freaking badly. I would actually just like to take him home, but I don’t his two totally amazeballs parents, would be o.k. this. I’ll just continue to take him in the doses I get him in, which totally makes my day.

It’s while browsing through the toy aisle at Target that I of course, walk past the Star Wars toys. I can’t resist. My heart flip-flops back and forth. New guys! New helmet guys that Ronan did not have, but totally would have wanted. I pick them up. I put them back. I almost walk away. I can’t. I turn around and grab the new guys and throw them in my cart. I’m buying them for Ronan. I don’t care if he is not here to play with them. I run home, look at my get two fucking things done list, I sit down and do them. Good job, you. I look around at our house. It’s so freaking clean. Everything is put away. There is not even laundry to do or windows to clean from your little pudgy, dirty hands smearing stuff everywhere. This is FUCKING BULLSHIT. I throw on my workout clothes. Well, since there is no maybe baby, I guess I can go beat myself up a bit. I drive to our mountain.

I listen to Dr. JoRo’s voice in my head telling me, no headphones… just try to be quiet. To be mindful. I run up our mountain. Except instead of taking our usual route when I get to the top, I turn the corner instead. I slip off my shoes and continue up, down, around, and around the unfamiliar trails. It’s hot. Nobody is around at all. My heaven. Inferno hiking season is almost back. My feet don’t really feel any pain. I run for a long time, barefoot. I stop after about an hour and a half of hiking up, up and up. I find a nice spot, throw my things down, sit down on a big, black rock. I close my eyes for a long time and think about you. I snap a picture to send to Rita. She responds back that the cactus I’m sitting in front of, looks like it flipping off cancer. I laugh. It totally does.

I head back down the mountain, keeping my shoes off for half of the way. I stop to put them on and start to cry. A few ideas trickle into my head about what it is, that I would like to ask people to do for your death day. I’ve decided that’s what I’m calling it. Not your passing day (that sounds too sweet) not your anniversary (i hate that too) I guess I could call it your Fuckiversary. That has a nice ring to it as well. You deathday/fucking bullshit Fuckiversary it is. I know a lot of people will want to do something. I’m creating a little list in my head of what it is, I would like to see done. Up until today, I have not been able to even think about it without getting physically ill and drawing a total blank. It was only today, during my hike of numb pain, that ideas started to spin around. I’ll write about them later, not tonight. I’m tired and I want to be able to let this all come about, naturally, and I don’t feel like I’ve gotten it all figured out yet.

My little hike lasted 3 hours. It was nice to be outside, connecting with nature in a physical way. I get in a funk when I don’t do things like that. I always feel close to you and I tend to feel the closest to you, on that little mountain of ours. I left your bracelets all over the same tree below, like I do every single time I am there. I always wonder who finds them. I always wonder if they will google your name and learn about the most beautiful little boy who ever lived. I hope they do.

I went to your favorite restaurant tonight, Chelsea’s Kitchen, with that little Dragon friend of mine, his parents, your daddy and brothers. I felt like you were there with us. Especially as I watched Little Dragon, jump into the water fountain outside of the restaurant with his shoes, socks and pants on. If you were there, you totally would have done it with him and I would have laughed. I laughed and I almost heard your giggles in the distance. I laughed even harder when that Little Dragon, grabbed someone’s shoe that was just sitting near a rock by the patio (seriously who takes their shoes off, at a restaurant?? if you ask me, they were just begging to be thrown into the water by a very curious 4/maybe 5 year old) and threw it in the fountain/pond. Such a little rebel Ronan move. Your brothers thought it was hilarious. Rita, apologized profusely, but secretly /not so secretly to me, thought it was funny. I looked up at the sky and blew you a kiss. It was a great ending to an almost good day.

I love you to the moon and back my very spicy, little monkey boy. I’m so sorry for all of this. I miss you. I love you. I hope you are safe.

xoxo

A sweet little visit

 

Ronan. You know how I know that I am right about what it is, I need to do? Because last night or actually at 5 a.m. in the morning, after I had written to you, I fell asleep thinking of you and these little plans of mine. Guess who appeared in my dream. You. You came to see me. You never do this. We were on an airplane together. You were sitting across from me. You had all of your hair and looked so healthy and perfect. I knew you were sick, but you couldn’t tell by looking at you. You squeaked at me in your little voice about wanting to see Nana and wanting guacamole. I woke up because your voice sounded so real, I thought you were in the room. You were not. I think this was your way of telling me that I am on the right path of what it is, that I am supposed to do.

This may be my shortest post ever, Ro. I am too tired to write much else. I had dinner with your Dr. JoRo tonight and a very special guest. We all ate the guacamole you asked for at your favorite restaurant, Chelsea’s Kitchen. I missed you so much and wished that you were there to eat it with us. I’m so sorry you cannot. You deserved so much better. I love you. Sweet dreams. I hope you are safe. G’night baby doll.

xoxo

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

A Sea of Sadness

 

 

Ronan. Hi baby. I’m waiting to board my flight back to San Diego. It’s late. I had to leave you tonight and somehow I made it to the gate of the plane. I had an o.k. day. I kept busy and luckily I had enough things around Phoenix to do to keep me that way. I ended my o.k. day with dinner at my favorite restaurant, Chelsea’s Kitchen, with my lovelies, Tricia, Danielle, Marisa, and Stacy. It was a good dinner and it felt good to be with my girlfriends. Tricia took me back home after dinner and she and Marisa helped me pack up my things to get back to San Diego. I didn’t have much to pack, but they helped me with little things too like making my bed and picking up little things here and there. I kissed your urn goodbye and told you I loved you. I had a hard time leaving the bedroom where you sit, all alone in the dark. I didn’t want to go. Marisa left me with a hug goodbye and an I love you. I miss her so much. As soon as I sat down in Tricia’s car so she could take me to the airport, I started to bawl. I stared at your bedroom window and all I could think about was how you were never going to play in there again. Tricia pulled out of our driveway and held my hand. I cried all the way to the airport and said things out loud to her that I don’t really say to other people, but I think in my head all the time. She asked where I thought you were. I told her I didn’t know and how hard that is for me. She told me that she thinks you are always with me. In my heart of hearts, I think that too, but it doesn’t ease the pain any less. When we got to the airport, she insisted on coming in with me instead of just dropping me off at the curb. I didn’t put up a fight.
She walked me to security where we both cried, hugged, and she told me how she would never let me go. How we will get through this. How much she misses me. I just held her tight and told her I knew. I hate so much, that you, her first godson, are gone. I will never forget the day I asked her to be your Godmom. It was such a special moment in my life.  I hate how badly she hurts. She was with your Daddy and I when you came into this world. She was the one holding my hand with your Daddy as I screamed for another epidural. She saw how perfect you were after you were born. And then she stood with me as you were diagnosed with cancer. She held my hand through everything and watched as you got sicker and sicker, but refused to believe the worst. She watched the worst come true. She watched you come into this world and she watched as you left. Along with feeling the pain of missing you, I feel the pain of everyone else around me too. How can one person be given so much to handle in life?? How am I expected to survive this when not only do I feel like dying because you are gone, but because everywhere I look, I see nothing but sadness and tears in everyone else’s eyes. I am swimming in a sea of sadness and all I want to do is drown. I don’t even want to use the word, unfair anymore because that is such a weak word. This is beyond unfair. It’s mother fucking fucked up.
 Today, as I made it though the day without crying, I sat in the waiting room of my therapists office and I was going through all of my new emails. I saw one that was from Dr. Mosse from Chop. She sent me a real, heartfelt email that said things such as she hoped it wasn’t  too disruptive or painful to hear from her. She simply wanted to reach out and say hello, to let me know that you are in her thoughts as she comes to work everyday and thinks of you as she works harder to find a cure for Neuroblastoma. For something so simple and so little, it meant the world to me.  I started crying as I read her words and sent her a quick email back to thank her for taking the time out of her very busy life to check in on us. I told her how I am struggling and a big part of this comes from the what if part of if we would have chosen her path, for your treatment. I told her that I will always second guess our decision. I told her how I was sorry because I didn’t listen to my heart after our first meeting with her. When we first met Dr. Mosse, I sent Fernanda a text that simply said, “It’s her. She’s going to be the one to save our baby.” Then we went out to New York and met with Dr. Kushner, whom I really liked. Whom I really believed too. So, I shoved my “gut,” feeling down as far as I possibility could and ignored what was in my heart. I will always wonder, what if. Your daddy and I have gone over and over this. He is sure if we would have went to CHOP, that your outcome would have been the same. The bottom line is, we will never know. We will never know and you are gone. Something has to be done about this. Someday, a cure has to be found for this disease and it has to be understood because no family should go through something as horrific as this.
Tonight, I feel weak, scared, and sad. Tonight, the feeling is back like I cannot breathe. I would like to go to sleep and never wake up just the way you did. Tonight, the pain of being on this airplane all alone, without you, is just too much. Where is my Bryson friend when I need him? There are no Bryson’s on this plane tonight. It is full of people. People who are busy. People who are happy. People who are unhappy. People who are unsatisfied. People who don’t care. People who have no idea how many children die of childhood cancer everyday. People who have no idea what it means to truly feel, to truly live, to truly be grateful for every little thing they have in their lives. At one point in my life, I used to be like these people. Unaware of how precious life TRULY is, because life just WAS. It was a given, not a gift. I never took the time to fully understand how precious life really is, how precious every moment in life, no matter how good or bad truly is because whatever it was…. I was alive and I had 3 healthy children and I never second guessed that things would be any different. Now I know. I know because you are gone and I am the closest to knowing what it feels like to being dead, while being alive. I don’t want this life without you, Ro. But I also respect that this life is not my choice and I cannot decide when it is my time to be with you again. I respect that I have to take care of your brothers, your daddy, our friends, and family. I have a lot of people who I cannot let down. I cannot let you down either.
So sorry for the pity part tonight, my love. I will push though this, pick my head back up, and stay focused on the job that you have given me to do. I refuse to fail you. I love you, Ronan. To the moon and back baby boy.
I wrote that last night, Ro. But was too tired to finish it. I had a hard day today. We spent the day moving out of the unit that we have been in for a month and into a new unit. It’s a different building, overlooking the bay, and it is pretty much the same layout of the unit that we stayed in over here when you were just a year old. This has opened a floodgate of memories for me and I have spent the majority of the day crying. As I was unpacking the car with your daddy, he noticed my tears. He picked me up off the ground and held me for a long time. I hate everything in our new life that we are doing without you. I hate that today, I unpacked the car without having to worry about you running around crazily in the parking garage, as I pictured myself having to chase after you to make sure you wouldn’t be hit by a car. Today, I had none of that worry and it is all I wanted.
Once we got settled in our new place, we went into town to eat. We ate at our favorite Burger place here, just the 4 of us. You would have loved the chocolate milkshake that I shared with Quinn. It had a ton of whipped cream on it and your brother laughed as I fed it to him. You used to LOVE your whipped cream. After we had our lunch, we ran into the grocery store to get a few things. As I was walking through the frozen food aisle, there it was. Your Fettucini. I felt like passing out on the spot. I stopped and stared at the Marie Callender’s Fettucini Alfredo that you lived off of while we were in the hospital at PCH. You always hated hospital food and I cannot count the times we would cook this in the microwave together and how happy it made me to watch you gobble it all up. It was the one thing I could always count on you eating. I loved feeding it to you because of all the calories it had in it. I’ll never be able to look at that Fettucini the same again. I’ll never be able to look at a lot of things the same again.
We came back to our unit and tried to get unpacked a little more. Mimi and Papa came over to take Liam and Quinn to see “Cars 2.” Your daddy tried to talk me into going out on a date with him, but I couldn’t muster up the energy to go anywhere. I was just feeling too sad today. I did get out for my nightly run though. I did my usual route; a fast 6 miles. Around mile five, I started to feel sick to my stomach. You know me and my notorious throwing up ways if I run too hard or too fast. Luckily I found some nice bushes out of sight from anyone and out came my one meal of the day…. lunch. I finished the last mile and now here I sit. I still feel sick to my stomach and I’m sure it’s from the combination of you being gone and pushing myself with my 8 minute mile tonight. I had a lot of anger to pound out on the pavement and it seemed as if my feet were on fire. Too bad my body decided that it was too much because it felt pretty good. I haven’t run in a few days which always makes me extra anxiety ridden, depressed, and leaves me with extra nervous energy that I don’t need. I had to get that out tonight otherwise I was going to end up doing something drastic; like eating a bag of donuts.
Alright my little man. This is all for tonight. I miss you so very much. Sweet dreams and I hope you are safe.
P.S. A very Happy Birthday to my dear Laura Leigh Chase. My friend since we were 14. My friend forever. I’ll never forget the day in our 8th grade P.E. class when we got “married.”  It was the most gorgeous, sunshiny day outside and we skipped off, holding hands, and went to pick the flowers on the side of the hill instead of participating with the activity that we were supposed to be doing. Instead, we decorated each other with flower hippie headbands and had some pretend to marry each other ceremony. 17 years later and here we are, mama. I am so proud to still be able to call you one of my best friends. I love you. And I am so happy you married Kasey in real life. Have a beautiful day my dear, sweet friend.
xoxo

Happy 4th Birthday Ronan Sean Thompson

Ronan. Happy 4th Birthday baby boy. It was the fastest 4 years of my life. It flew by in the blink of any eye; but now that you are gone, the days and nights drag on forever. Time seems to be standing still. I woke up at 6 a.m. and hiked Camelback by myself. I have decided to make this a tradition and do this on your birthday every year. I put about 20 of your purple F U Cancer bracelets in my backpack and when I got to the top of the mountain, I decorated one of the trees with all of your bracelets. I hope a bunch of new people are wearing your little purple bracelets around and I hope they know your story now. I’m so motivated on spreading the word that I will do whatever it takes. I looked for you at the top of the mountain today, but I didn’t see you. I miss your beautiful face so very much.

After my hike, I came home and got ready for your day. It was a hard day and all I really wanted to do was hide in my bed. I didn’t but I honestly don’t know how I survived. I had to write out your obituary today. On your birthday of all days. Your daddy wanted it done. It really only took a few minutes and I am surprised how quickly all of the words came to me. I guess you were helping me along because it was very effortless. Who would have thought that I would be writing out the words to be printed in the paper about your death, on the day you were born. It really is the cruelest joke ever. And nobody is laughing.

Your dad, Nana, and I took Liam and Quinn to Chelsea’s Kitchen for lunch; your favorite spot. Quinn ordered a Shirley Temple and they brought him his drink with lots of extra cherries and I didn’t even have to ask. It was just the way you would have liked it, Ro. I ate the Ahi Tuna Tacos just for you because I have not eaten in about 3 days. I was not hungry, but I forced myself to eat for the sake of your birthday. After lunch, we took Liam and Quinn to Target to pick out a gift from you to them for your birthday. Liam got the new Lego Pirates of the Caribbean PS3 game. Quinny got a new Lego Wii Controller. It was hard to walk through Target without you as that used to be our special thing to do. It felt very eerie and sad.

We came back home and tried to fill the rest of the day with as much happiness as possible. It was exhausting and we all had a hard day, trying to make something so sad, somewhat happy. We didn’t pretend not to be sad though. We talked about it instead. I told Quinn how he and Liam may need to go talk to someone about all of this. He just responded, “Why mom? I can just talk to you.” I told him of course he could, but sometimes it was good to talk to someone on the outside because I am hurting so badly as well. I told him I would go with him and tried to explain to him how this was the worst thing that could happen to a family and how important it is to embrace all of our feelings and not keep them bottled up inside. He seemed to understand what I was saying for the most part but I know at 8 years old he cannot grasp the magnitude of what has happened. At 33, I have yet to grasp it myself. Shock and numbness are still all I feel.

Later in the evening, our house started to fill up with some of the girls whom shall remain nameless. You know who they all are; the one’s who have held me up this whole time.  The one’s that love you so much, that they seem almost just as sad as me. The one’s whom I would not be standing here if it were not for them. They all wanted to celebrate you, Ro. They swooped me off for a few hours and we celebrated you in the most beautiful way possible. 11 of us got tattoos in your honor. Almost all purple stars, some tiny, some big. There were a lot of tears tonight with the girls, but the amount of love was something like I have never experienced before in a room full of all women. At one point, I looked at Fernanda and said, “I feel like there is so much love here, that it is going to bring him back.” I am serious when I say that. I felt like the heavens above would open up and drop you back down into my arms where you belong. That is the only place you belong and I will never stop believing that it is going to happen someday. But Ronan, if it doesn’t happen, I will try my hardest to be o.k. I have the best man taking care of me, the best twin boys, and friends that are so unbelievably beautiful that they seem almost not real. I don’t know how I got so lucky to have all of them; but I know that I am so ridiculously thankful that it makes my head spin.

Once we finished up our little tribute to you, we went outside with a bunch of purple balloons. I held a purple star one for you. All of us gathered around in the parking lot and sang “Happy Birthday,” to you baby. We then let the balloons go. We all cried, held on to each other and watched the balloons float into the dark air. It was beautiful for being so sad. We all came back to our house and broke out your birthday cake. Quinn and Liam were dying to have some. Gathered with a bunch of our friends, I lit 4 candles for you and we all sang “Happy Birthday,” again. My eyes stayed totally locked on your daddy’s eyes because I knew if I looked elsewhere, I was going to lose it. I had to stay strong in front of Liam and Quinn. I put on my best mama boots and sucked it up. I wished for you baby. Just like I’ll do everyday for the rest of my painfully long life. Being without you is like being a trapped wild animal. I will never escape this cage and I wonder if this feeling of restlessness will last forever. It  makes me want to crawl out of my skin, this feeling of being without you. How long before I completely crack?? I can slowly feel the numbness wearing off and I am so scared of what is to come. Just the tiniest taste of knowing what life is really like without you is so physically painful that I am almost positive that I won’t survive this. If the pain of a broken heart could really kill someone, I would be dead by now.

I’m sorry, Ro. For being so sad tonight. I hope it makes you feel better to see how we ended your day. I know you saw us outside, playing basketball in the dark with your brothers. I could almost hear your whispers in the cool air of the night. I know you know how much we all love you and miss you so much. So many people let balloons go today for your birthday. People we don’t even know, Ro. You are the most loved little boy up in the sky. I love you to the moon and back. It was the best worst birthday ever and we will never stop celebrating your life. G’nite sweet baby boy. I love you so much.

xoxo

Ro baby takes San Francisco

We are leaving this evening for San Francisco. Praying for a safe flight of course but most of all praying for a little bit of clarity. I hope by looking into Dr. Matthay’s eyes, that I will have a better feeling about everything. I am hoping she can give us some answers and guidance. I am hoping that Woody and I will walk away from this trip feeling a little more prepared for what we are up against. As of now, all we can do is gather all of the data possible and let our intuition guide us. I hope to get a feeling of what San Francisco can offer us.

Today, I met with my friend, Mr. Sparkly eyes. I put on my bravest face but he knew just by looking at me that I was a wreck. We sat for about 20 minutes and had it out. He asked me why I was second guessing myself… told me to knock it off and just to continue to do what we are doing. He is right, I have never been one to second guess my choices in life and I cannot start now. I listened as he pounded into my head once again, how strong I am, how strong Ronan is and how when the decision is made, it will be the right one. It was just the little pep talk I needed. I felt stronger after having left him and I know he is right in everything he is saying. I met Fernanda for a bite to eat at Chelsea’s but it was really just another little pow wow session that I needed to have. I am so lucky to be surround with such bright and beautiful people. I wish I could put Fernanda in my back pocket and take her with us. We sat and talked about everything from Ro’s path, which is uncertain as of now, to how we are going to get Oprah to listen to us and do a show on Childhood Cancer. Fernanda has been emailing Oprah every single day and has made it her personal mission to make Oprah listen. Could you imagine the good things that would come of this if she did?? The awareness that would be raised?? I don’t think it’s asking too much of her to change an episode of her show for something so important. I just pray that she hears all of the people asking this of her and chooses to do the right thing. She has the power to make this happen, if she would only listen. Her voice could change childhood cancer forever. Does she realize this?? I am not giving up on this Oprah thing, and if anyone can make it happen, it’s Fernanda. Thank you, F…. for lunch today and for the spirit of the person you embody. I swear to god you have wings. I have meaning to throw this quote in for a while. My friend, Melissa DiFilippo, who’s little girl is in Liam and Quinn’s first grade class sent me a message the other day on FB. It said, “When I grow up I want to be Fernanda.” It makes me laugh out loud and brings a smile to my face every time I think about it. I couldn’t agree more.

Alright world…. here we go. Off to San Fran and it’s time to take care of business. See you sooooooon New York Miss Macy!!!

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me

Magic Medicine…. Round 5, Day 2

Ronan’s day went pretty well. He slept a lot today and I spent the day cuddled up  beside him. We were both tired from last night. Because he is hooked up to so many fluids to keep him hydrated, he wakes up about every half an hour to pee. He is too proud to wear a diaper and won’t even consider it. That’s my boy:) Mimi Kay came by at 2 and I got to go home. I came home, slept for a couple of hours, and got up right in time to see Liam and Quinn. Woody worked late at the office so I took Liam and Quinn out to Chelsea’s Kitchen for a date night. It was so sweet to spend some time with them. We had a great night together. Mimi is staying the night at the hospital tonight so I can have a little break and spend some time with Woody.  My parents get in tomorrow and I can’t wait to see them. Liam and Quinn do not know that Papa Jim is coming. It is going to be a nice surprise for them.

The nights in the hospital, when I can’t sleep, I spend my time on the computer trying to get the word out about Ronan. I have become obsessed with finding my little guy stylish hats to wear and I stumbled on the most adorable little boy website. The clothes are darling, something that is hard to find when you are looking for boy clothes; and their hats are right up Ronan’s alley. I emailed them last night to tell them I had the perfect model for their hats and wanted to know if they would be up for helping me raise awareness for childhood cancer. I was so surprised this morning when I woke up to an email and a got a phone call from a woman named Denise who is part owner of the company. She was so touched by Ronan’s story and wanted to be involved in any way possible. She then told me she was sending Ronan a huge box of clothes and hats for free. I was not expecting that at all! She also called back to ask if Ronan had brothers because she wanted to send them some things as well. How amazing is that? What  a great company and I am so excited to work with them. I have been emailing the GAP forever now with no response. Go figure. Guess they are too cool to bring awareness to something like childhood cancer. A big thank you to Denise. You have a heart of gold. Take the time to check out their website… if you have little boys, you will fall in love with their clothes. www.foreaxelandhudson.com. I also have a link on the right side of Ronan’s blog that will take you right to it.

I also came home today to find an envelope in the mail from a friend of Woody’s from law school, Marcela. Her little girl just celebrated her 2nd birthday and instead of asking for gifts, Marcela asked everyone to donate to Ronan’s Foundation. I opened up a card with about 10 checks in it. I started bawling after reading the card that everyone had signed and just because of the beauty that came with it. Talk about a selfless thing to do. Marcela, your heart is so beautiful. I knew that from the first time I met you when Woody was in law school. I was so nervous to meet all of his law school friends but I had a connection with you from the beginning. Thank you for being so selfless and knowing what really matters in life. I love you.

The word is spreading about Ronan. As of today, I have 121,098 hits on his blog. His website is coming along. I will be so excited when that is up and running. Thank you to all of you who are getting the word out about our baby boy. He is such a strong little guy and is going to beat this fight, kicking and screaming the entire time. I could not ask for anything more.

Time to go and spend some time with my hubby. Love you all so very much. Thanks to Mimi Kay for giving me a break from the hospital. The time I had with Liam and Quinn tonight was just what I needed. I love you.

xoxo