http://www.youtube.com/watch?v=_GMQLjzVGfw
This picture made my freaking week!!!!! Mark Foster from Foster the People and Kimbra wearing a Rockstar Ronan bracelet. And notice his star tattoos! We think this is a sign. Thank you, Teddy. Take good care of that mama of yours for me. I’m working on some big things for the both of you. I love you.
xoxo
Ronan. Today started off as good as it possibly could, without you here. We woke up and Liam, Quinn, and Layne spent the morning playing together. I put on my good mommy boots and made them all a huge breakfast. Waffles, fruit, eggs, bacon, sausage…… you name it, it was on the table. I thought of you the entire time as I was making the scrambled eggs, just as you would have liked them. You used to insist that I made the best scrambled eggs ever and would only eat them if I made them for you. I loved that so much. Soon, Layne went home to get ready for the day. Your daddy took Quinn and went off to Costco and to run some errands. I stayed here with Liam and we just kind of had a lazy day. I cleaned and did a lot of laundry. I had a few things trigger a lot of tears today and I did a lot of throwing up. Your dad came home to me, a wreck, just sitting on the bed, bawling. Quinn took one look at my face and sat down with me at told me he loved me and started rubbing my back. I forced the tears to stop and got up to help them unpack the things from Costco. Your daddy and Quinn came home with my very own surfboard for me. It almost cheered me up, but I mostly just couldn’t wait to get out into the water so I could get my ass kicked. I was on a mission. Mission accomplished.
I got your brothers all ready for the beach and we headed out to meet your cousins. They had their stuff in the sand, but they were all in the pool. We set our stuff next to theirs, Liam and Quinn headed out to the pool and I grabbed my board and paddled out into the ocean. The ocean seemed as angry today as I was. The waves were ridiculously big. I didn’t care. I paddled out as far as I could, which ended up being really far. Wave after wave threw me from my board and under the water. I continued out there, to try to get past them. I got up a few times, I asked for your help. At one point as I was paddling out, I looked up and a huge wave was getting ready to come crashing down on me. I think I said, “Oh shit,” out loud and ended up flying off my board and the fin ended up hitting the back of my arm really hard. I almost thought it was sliced open, that’s how badly it hurt. Turns out, it was not…. it turned into a big welt and bruise instead. No big deal, yo. As much as it’s hurting tonight, I am choosing to ignore it because all I can do is think about you and all the pain you felt, especially towards the end of your fight. This stupid welt on my arm has nothing on you, Ro. I surfed for a couple of hours and the current ended up pushing me really far away from my starting point. Tiffany was watching from the shore and when I finally got back over to her, she said she was a little concerned that I was going to end up in Mexico. I told her I didn’t realize how far away I had gone and that I was ALMOST a little scared for my life at one point. But not really because fear doesn’t really seem to exist anymore.
After my little surfing fiasco, I went to join your brothers and cousins at the pool. They are such little fish and didn’t stop swimming in the pool and the ocean until 9 tonight. We were down at the beach for 7 hours today. We met up with your Mimi and Papa, and Uncle Larry and Aunt Joan. Tiffany and her kids too, and we grilled up a big dinner by the pool while all the kids continued to swim. It was such a sweet summer night. Of course, the only thing missing was you. Quinn ended up cutting his little thumb on something in the hot tub so we had to doctor him up. I took him into the bathroom as he was very upset about his thumb. I changed him into his warm clothes, looked at his thumb that thanks to Tiffany and her first aid kit, we had it bandaged up pretty good. He was really upset about it and I just quietly explained to him that I was sorry he was hurt but he is going to get hurt in life; it’s just part of being a kid. I talked all about you and how after all the things that you went through, that were so painful, that you hardly ever cried. I don’t know if it is a good or a bad thing to make comparisons to you and how tough you were to Quinn. But tonight, it needed to be done and it felt right so I did it. I think more than anything, he was just tired and needed some mommy love. We packed up our stuff and Liam helped me carry everything to the condo while Quinn went on and on about his thumb. As soon as we got upstairs, I put him in my bed and 15 minutes later, he was out like a light. Worn out from his day at the beach and I know sad from missing you. Liam told me last night as he was crying that he was homesick. I asked what he exactly was homesick for. He told me his bed and you. I held him and told him we were all homesick for you, but now you lived in our hearts so you will always be with us. As much as I could tell you this seemed to bring him comfort, it didn’t. It didn’t help me either. I don’t want you in my heart; I want you back here with us, where your freaking belong.
After a long day, I ended it with talking to Stacy. What a perfect way to end my night then with a phone call from her. She had a lot to tell me about meeting with the busy little bees today in regards to the event that they put on at The Biltmore for you on Friday night. I sat, cried, and listened as she told me about meeting with the girls and how amazing they are and how much love they have in their hearts for you. I am still in awe of how quickly they put on this event and how many people came out to support it. We talked about how after the summer, I would like to sit down and pour all of my energy into making this an event something we do every year for you. For others, because as I’ve said before, we have to raise awareness. I cannot believe the army of people that we already have lined up to help us with this. I don’t even know how this happened. Actually, I do. It is all you, Ronan. You are changing lives everywhere. I cannot wait to personally meet all the people who helped with this event and give them all the biggest hug from you. The passion that you have created is astounding and once again, I am so proud to be your mama and your best friend. I miss you, Ronan. I know you are here though. Thanks for the little sign tonight that comes from my Pandora. Right now, as I’m writing this, your song came on. The song that we played for you every time you were left alone in the room for your radiation. The Killers, “Human.” You are such a special little soul. G’nite best friend. Thank you for visiting your daddy so much in his dreams lately. I know you will come to be when the time is right and I can get off of this damn Ambian. Love you to the moon and back, baby.
xoxo
Ronan. I’d guess I’d better get used to these days of not knowing how I’m going to feel and what to expect. I guess I’d better, because yesterday was so hard, that today had no choice but to be better. The Frakes came over this morning to tell us goodbye as they had to head back to Phoenix. We were all sad to see them go; we loved having them here with us. After they left, we walked into town and had some breakfast. It turned out to be a sunny and nice day over here at the beach. Liam and Quinn were so anxious to get down to the beach with your cousins. We spent about 4 hours down there today. They had so much fun boogie boarding, playing in the sand, and running back and forth from the beach to the pool. I spent most of the day in the ocean, trying to surf. The waves were small today and they were breaking really close to shore. It was still nice to be out in the ocean, alone, thinking about you. I felt peaceful out there, a feeling that I never get to feel anymore. I guess I feel closer to you when I am closer to doing things more associated with the earth and this big world. Being in the ocean makes me feel vulnerable which in turn allows for my guard to come down and I have no choice but to sit back, open up my mind, and try to push away the pain to allow myself to feel something for you other than hurt and sadness. I like this surfing thing so I think I’ll stick with it. After our afternoon at the beach, we came back up to our place and got ready to head into town for dinner. Quinn was so cute and wanted to wear his “fancy Ronan” clothes to dinner. Little Fedora hat and all. It reminded us all of you so much. You loved the way I would dress you up in with your matching hat and clothes. The entire time we were at the pizza place, all I could think about was how much you would have gobbled up all of the pizza and loved it. It was strange sitting there without you. Too quiet and Liam and Quinn are too well behaved. I was missing your mischief so much tonight. Some kid at the table next to us was screaming and crying. It was music to my ears.
After we came home from dinner, we met up with your cousin, Layne, who is just a little bit older than Liam and Quinn. We met him in the grass with his mom and sister and they all came up to drop Layne off for a sleep over. After I got them settled, I headed out for a late run. I only did 4 miles, but it was fast. I sat after my run for a long time and talked to you and looked up at the stars. I kept going back to the last couple of days before you passed away. You weren’t really talking to me anymore, but I must have asked you 50 times, where you were going. I knew you were going away, and I wanted so badly to know where you were going. Every time you I would ask you this, you would yell at me that you were going “NOWHERE!” That brings me comfort now. It makes me think you didn’t really leave me, that you are still here, right beside me. I so wondered what was happening to your little mind, what things you were seeing, and all that unknown stuff scares me so badly still. I still get sick to my stomach when I think about you having to die, to go through all of that and I couldn’t go with you. I still can’t get over that you are not mine to take care of anymore. I promised you that we were going to get you all better, I promised you so many things, and now I am left with empty promises that I didn’t get to keep to you. I know this was all out of my control, but it doesn’t stop the guilt from taking over. Your dad and I used to have the conversation all the time about how we didn’t know what we would do if anything ever happened to you or your brothers. We would go over all the crazy things that could happen, like a car accident, one of you getting hit on your bike, getting kidnapped. We NEVER thought about one of you getting cancer. It was never even on our radar because in our world, that just didn’t happen to kids. We didn’t even choose to really look the other way about it, because we were so uneducated, that it just didn’t exist. And now look, Ro. You, the most precious gift to everyone in our family, are gone. Just like that. Poof. How can this be? Were you really mine? While I was sitting at the pool today, watching the 3o kids all run around, I actually thought this to myself in my head. Were your really real? How could I have had 3 such blissful years with you and then in a heartbeat, it was all taken away? What did I do in my life to deserve this? Was it because I cried when I found out that you were not a girl, but you were a boy at our ultrasound? I think about this all the time. How fucking stupid was I? After you were born though, the whole wanting a girl thing flew out the window. People would always ask if I wanted to try for a girl and my response was that I was so happy to have my 3 boys that I couldn’t picture it any other way. You three boys were the best thing to happen to me. Having 3 boys was a dream come true. I’m so lost without you, Ro. The last few days, I remember asking you what in the world I was going to do without you. I don’t think I’ll ever figure that out. Life is broken beyond repair. But somehow, I have to hang on to the little that we have left, not for myself because I could care less about me….. but for your brothers and your Daddy. They are all that matter now. I can survive living like I’m buried alive. This is the burden I will carry with me for the rest of my life and I will do it for you. You will forever be burned into my soul and I hope someday that the sadness will fade away just a bit and I will learn how to smile without it being so fake. Because of now, every smile that comes from my face is so forced and not real. I have to smile to keep the tears from falling and there is nothing natural about my smile now. It hides all the pain that I am feeling. I can put on an o.k. show to get me through the days, but it is exhausting.
Ronan. You should be here. All 3 boys are out in the livingroom now, chatting away and watching a movie. I cannot tell you how much having your cousins around this summer is saving us. Your brothers are enjoying them so much. It’s times like these when you find out how much family truly means. We are so blessed to have them all surrounding us. It worked out perfectly that they just happened to be here at the same time we are. We are so lucky to be so loved.
Do you know what else we did tonight? After we walked home from dinner, we went past the Hotel Del where your Daddy and I got married. Quinn took a picture of us in the exact spot where we said our wedding vows. Almost 10 years ago, Ro. Who would have known our happily ever after would have ended up with us having to watch one of our children die. FUCK YOU FUCKING WORLD. Why was somebody so pissed that we did have the perfect life, because we did. And I’m not ashamed to admit it because we worked hard to make it that way, although the perfect life did come easily to us. It was all based on being a good family who loved each other so much. A mom and dad who were best friends, 3 healthy boys, no drama, no stupid nonsense like drinking, drugs, lying, cheating….. we were just so happy and content with all of our little blessings. We were so content and felt so blessed. You know your dad would tell me every other day how lucky we were. We knew this, we embraced it, and we didn’t take it for granted. I’m so angry at how you were taken away from us and now we are left with all this pain and sadness. Complete bullshit. I know you know this. You, most of all, did not deserve any of this, Ronan. I love you and I miss you and I’m scared of the person I’m going to become without you. What if I can’t do this? What if this is all too much and I just end up pushing everyone away? Because as of now, I don’t like the person that I am. I’m ignoring all of my friends…. my best friend, and your Godmom, Tricia, included. Who does this? I do. Because I hurt so much that I don’t want anyone else to have to see me suffer. I would rather do this alone but I know that is not going to get me through this. I know this, but you know how stubborn I am. You were the same way, little man. I think I just need time. Time to be alone and grieve for you by myself. You lived inside of me for 9 months and after that you really didn’t leave my side for almost 4 years. Having you just gone, I feel like I am dead too. I just need some time to slowly come back to life and my independent self knows it is going to have to be on my terms. Guess it’s the Capricorn in me. I will let you help me though. When you know I am ready, I will be waiting for you. I’ll wait for you for eternity, my love.
That is all for tonight, sweet baby boy. Please don’t leave me. Please stay by my side. I need to know you are here. I need you to help me get through this because no one else can. I love you to the moon and back, Ro. Sweet dreams.
xoxo
P.S. To all you lovelies who came out last night. Thank you so much. My post was a little angry tonight, but only because of my heart that is broken into a million pieces. I cannot even describe to you how much I miss Ronan and how shattered our world is without him. I am so thankful for you all and how many of you that love us; please know that. I am so inspired by the event last night that I really want to turn it into a yearly thing. Next year, I know we can make it even more amazing although I heard from so many people how wonderful everything was. Next year, I will be strong enough to be there and I hope you can feel in my heart how beautiful I think you all are. Thank you again, a million times over. Ronan’s story has to continue on, our love story cannot end just because he is gone. It is because of all of you, that I know we can do this. His love, his beauty and his life will continue on because of all of you and the way I know his soul will be there guiding not only me, but you as well. Ronan had so much love, fire, and fight in his heart that I cannot wait to see what becomes of him and his story. Thank you all again. I love you so very much; even the people whom I don’t even know, but cannot wait to meet. Sweet dreams my dear friends. May your dreams be peaceful and full of love.
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
I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.
There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible. I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.
Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo ❤
We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.
Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.
Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.
The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah
I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again
Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide
I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind
Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide
Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide
You finally find
You and I collide
You finally find
You and I collide
ROCKSTAR RONAN 