We are in the process of getting some amazing Ronan things made up with our friends at Palmer Cash. In the mean time, you can order the tee’s that are left and Ronan’s bracelets. Here’s the link. Thanks lovies!
All Good Things Are Wild and Free
We are in the process of getting some amazing Ronan things made up with our friends at Palmer Cash. In the mean time, you can order the tee’s that are left and Ronan’s bracelets. Here’s the link. Thanks lovies!
Ronan. Hello little bug. Guess what I did today. I spent the day doing things that I would normally not be doing; if you were still here. This happens to me a lot in this new life of mine. Sometimes, I feel as if I am living a double life. That I’m living the life of a person that I do not know at all. I’m trying to figure out who this new person is and if I like her or not. I still have not made up my mind about that. We shall see. I am thinking she is not going anywhere anytime soon. But I also know that I have no way of knowing that because as we have learned, life can be cruel and take you in an instant. And as we have learned, we have no control over when your time is up because death does not discriminate. I’m trying to remember that I am supposed to be making the most of every second, of everyday that I am “lucky,” to be alive. I don’t feel very lucky without you.
Today, I was honored at the Arizona Foothills Luncheon. It was weird. Weird in the way that people whom I did not know said things to me like, “Congratulations!” And I didn’t know how to respond so just coyly smiled and listened to the little voice in my head that said, “For what? My dead child? Oh, I know. So totally awesome!” I forget that there are people out there who think I’m inspiring as I am only listening to the way you are telling me to do this. So when I hear things like, “We are proud of you. You are so amazing!” My thought or response is usually just, “Well, he was amazing.” Because that’s all I know to be true, Ronan. That people should be proud of you, not me. People should be honoring you, not me. I’m simply just a vessel here left on earth, to carry out your mission because you were destined for greater things, right? I truly want to believe this last part. But of course, the selfish me does not want you to be destined for greater things and it pisses me off that you are gone and just not at home, cuddling in bed with me where you should be.
The luncheon was really nice though and I am grateful to AZ Foothills for not being afraid to take a chance on a girl like me as I know how sad and dark this story is. I am grateful that they can see beyond the sadness and the darkness of this story to the love that shines through, so brightly. Nobody can deny that no matter how many times I throw the fuck word out there and I scream, “I hate the world!!!!!!” at the top of my lungs. Our love story is undeniable and I am thankful that they chose to honor it today. I got to sit at a table full of our loveliest of lovelies and watch as they all wiped the tears from their eyes. Dr. JoRo got up and spoke for about 30 minutes. There was not a dry eye in the house. She talked about you a bit which I was not expecting…. but it was a nice surprise. She talked about life, death, kindness, sadness, laughter, love, and all things honest. It may have been a little too honest for some of the people in that room today. I wondered how many actually really walked away, grateful for the gift of watching one of the most beautiful souls on earth, speak. I hoped every single one of them. I wondered how many of them had taken care of their sick baby, who had cancer. I wondered if any of them knew what it was like to spend 8 months in cold, icy hospital rooms, fighting every second of everyday for a life that means more to them, then their own. Cleaning up vomit. Blood. Shit. Pee. Medicine. Spit. And feeling so grateful to do so because it meant LIFE. Not death. All while listening to the screams, cries, tantrums, of their child and other children around them. All while the rest of the world, ignores them because it can’t happen to them. I wondered if any of them knew how close a mother and a child grow, going through something like this together. How a bond is formed, unlike any other that exists in the world. I wondered if any of them could have imagined going through something like this only to have the love of their life, taken away from this world. To have watched as their child, slowly died. To have held their child as he or she took their last breath and fluttered their eyelids for one last time. I wondered if any of them, could have survived this and put on a green dress 8 months later to sit in a room full of women, who have not survived this. Only one woman in that room, had survived this today and that was me. For about .2 seconds, I was proud. But only for the reason that really matters. Because I knew you were watching over me today and I knew you felt proud. That’s all I care about as it is the only thing, that truly matters to me. Every single thing I do, every breath I take, every foot I put in front of the other, every tear I cry, smile I smile, everything I do in this life…. is for you. And I am so grateful for the gift of our love. I know I say this all the time, but it will change things. It is already changing things. I know we are just getting started, Ro baby. I know this.
So, the past couple of days have been pretty hard. But looking back, I’ve had some things happen that have made me laugh. Mostly shit that I hear myself saying or doing and I can’t believe that I am saying or doing. Sometimes, it makes others laugh which I swear to god, is the BEST medicine. When I make other people laugh, Ronan. OH.MY.GOD. You have no idea how good this makes me feel. Me, the girl with the saddest green eyes, still has the ability to make people laugh. For such a little thing, it means the world to me. These are the conversations over the past couple of days, that have given me a good chuckle. I hope they made you laugh too.
Last night, we were driving home from my very Fucky Sucky Unbirthday. As we were driving home, up on one of the hills by our house there is the most obnoxious, huge house. It is covered head to toe in Christmas lights. I mean covered. Every inch of the house, trees, cactus, etc….. My head immediately went to……” I wonder how much electricity those people are wasting, for their God damn Christmas lights. It could be going to Childhood Cancer. Think about all the money, people waste, for Christmas lights when it could ALL go to Childhood Cancer. America is so stupid. And ignorant. And blissfully blind.” Christmas lights, in my crazy, bereaved mind, should not exist anymore. I then said to myself…. “OMG. It’s January. It’s my birthday. Christmas is way over.” I said to your daddy, “Take me to the store.” He looked at me and said, “For what?” And I said, “For some eggs. I’m going to egg those assholes house, who still have their obnoxious Christmas lights up! It’s January 11th! Why do they still have their lights blaring?!” Your daddy then told me he would in fact, not drive me to the store, to get eggs, to egg the assholes house. I actually replied to him, “IT’S MY BIRTHDAY! I CAN DO WHATEVER I WANT! SO TAKE ME TO THE STORE, SO I CAN EGG THEIR HOUSE!” I quickly realized one of two things: 1), that I was acting like a bratty 13-year-old, which I often embrace, and 2) that this plan was not going to happen so I should just let it go. The thought of actually doing this, made me laugh so I let that be enough to satisfy me. I know you know I fully planned to escape during the middle of the night, to drive myself to the store to buy eggs and do this. I should have called my Mandy Bee to pick me up. We could have dressed up like real life Ninjas. Word to the wise. Take down the fucking Christmas lights. Christmas is OVER. Move on. And if you are too lazy to take them down, just don’t turn them on. You are blinding me with your obnoxious, asshole, stupidity.
I went to get the mail today and I had some random package come in it. I get a lot of these. A lot of the time, they are small things, from strangers and they always make me smile and cry. It’s the pure kindness that gets me the most. Today, I got a package and it didn’t say who it was from. I opened it up to find the best tee shirt EVER! It’s black and in bold white letters, it says, “Fuck you you fucking fuck.” It totally made my night. I proudly put this tee-shirt on, as your daddy was getting ready to take me out for a quick bite to eat, as your brothers are staying with your Mimi and Papa tonight. Your daddy once again, just looked at me. “You cannot wear that out of the house, in a public place. You need to listen to me. I do this for a living, you can get into trouble for that.” I just looked up at him. UGH. Why does he have to be such a rule follower?? You died of cancer so don’t I get a hall pass to wear/do/say/act any way I want? Turns out, that although I often feel this way, I do not. “I’m wearing it. It’s awesome. If I want to wear it, I can. I’m sorry you didn’t know what a rebel you married, I’m sorry it’s been so repressed and you now have to just get used to it.” You daddy started chuckling out loud at that one. He quickly informed me that he knew what he was in for, when he married me. Since he was trying so hard to be a good sport about it, I cut him some slack and put on a coat on over my shirt. But I only told him I was doing this because I was cold, not due to the fact that I was about to give him a heart attack. And I unzipped my coat in the restaurant; obviously Ronan. Rule breaker for life:)
While we sat in the restaurant, we sat and looked like the “normal,” couple that exists in society, everywhere I go. We ended up sitting next to this couple who had a child about your age. I tried to ignore this annoying couple tonight. I was trying my best not to let them rip my heart out because that should have been us, sitting there with you. I was doing a really good job until I noticed the toy that the little boy pulled out of his bag. It was a lego Star Wars toy. My eyes welled up with tears and I choked on the strawberry that I was trying to eat. The mom started talking really loudly about that book, “The Secret.” The Oprah book that had everyone raving a few years ago. I never bought into that horse shit of a book but apparently, when you put something out there in the world, that you want to happen badly enough…. if you want it enough, it can magically be yours, just by you putting it out there, Ro. Or it can also be said that, everything in life, is possible, nothing is impossible. There are no limits. Whatever you can dream of, can be yours, when you use The Secret.
Otherwise known as HORSE SHIT. I’m pretty sure, the people starving in Africa will not die…. due to “The Secret.” I’m pretty sure that the packed orphanages around the world, will not become empty….. due to “The Secret.” I’m pretty sure, the problem of homelessness, childhood cancer, kids dying in general, abused kids, drugged up parents who should not be fucking parents because they put their baby in the spin cycle of the washing machine….. will not disappear because of “The Secret.” I’m pretty sure, the fucking god damn Secret book, will not bring you back. But I listened tonight as this lady told her husband the power of ” The Secret.” and how it was going to bring her a new car this year, a fancier one. Your daddy watched me as I listened. Your daddy squeezed my hand. “I’m going to throw my strawberry at this ladies head, if she doesn’t shut up.” She didn’t shut up. I didn’t throw the strawberry at her head. I got up, walked past her and made sure she saw my tee-shirt instead. Her mouth dropped to the floor. I just smiled. I now know who sent this tee shirt. Word travels fast when you grow up in the smallest of towns with the biggest of hearts. Thank you, S. You truly are one of my little devils rocking this thing called life for me, when I cannot.
Tonight, your daddy looked at me, Ro and goes, “How long until you get a devil tattoo?” I just laughed. And I thought of you. My most spicy, little devil who was all things sweet, pure and innocent. My most beautiful little devil that rules my life and I wouldn’t have it any other way. I’ve never understood the angel/devil role. The angel always fucking annoyed me and it still does to this day. Why can’t the devil be an angel too? Why does the devil, have to be bad? Because that’s what society teaches us. That’s what religion teaches us. That’s fucking stupid. It’s called being brain washed. It’s called letting something “bad,” control your life and fear it. I say take that something, “bad,” and make it GOOD. Take that little devil and instead of making him evil, make him spicy with nothing but the purest intentions. Make him an outside of the box kind of thinker. Make him fix problems in all sorts of different ways, just not one formula. Not just one answer when the world is full of so many different answers. Make him brave, determined, fearless, smart, compassionate, loving, crazy, independent, sweet, kind, gentle, and unique. I have a little devil that sits on my shoulder all the time and that is you. You are all of those things to me and you always will be. The little devil who knows what it means to be naughty and nice, in the best way possible.
Alright Ro. I’ll get off my soapbox now. To each his own. Respectfully so. Wild and Free, together we will be. I love you to the moon and back. I miss you. Every second of everyday. Sweet dreams little man. I hope you are safe.
P.S. I’m too tired to touch on this subject tonight so I’ll just leave it short and sweet.
If you do not make that Barbie, with a bald head, for childhood cancer, then you are ASSHOLES and you will be disappointing so many people who you could so easily make smile. It’s a NO BRAINER. Please do not be morons here. We have enough of those in the world, ****cough cough**** Casey Anthony and her fucking “Webcast that was hacked.” Make it. Donate the money. But please be aware, of where you are actually donating the money to. Please donate it to somewhere, that is actually invested in finding better treatments in hopes for a cure. Don’t do this, to make a profit off of it. Trust me, nobody benefits from a dead child. Well, except the insurance and pharmaceutical companies, but that is a whole different story that I’m sure you are not interested in because this can’t happen, to you. I’m here to tell you it can.
Be active in spreading awareness. Just fucking do it.
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.
New York Miss Macy, Quinny, Mama Maya, and Li Li
Ronan. Everything with you ended too quickly. I thought we would have so much time left together. We had so many plans to fight so long and so hard for you; until we got you better. We had plans for your brothers to spend the summer in NYC with us while we went through your treatments. I’ll never fully grasp how quickly things spiraled out of control. How quickly the tides turned and before I knew it your little life had slipped from my hands. I’d give anything to have you still here; fighting and all. Just to hear you laugh, to see your smile, to have you sleeping next to me. I still cannot fully sit back and think about our reality. I feel like a fish out of water and I have to fight for every breath I take. I’ve never had to focus on breathing in my life and now this takes up most of my day as I often feel like I am not getting enough oxygen to my brain. I now have to sit and making sure I am not going to suffocate and concentrate on getting air into my lungs. This is what it feels like to have you gone. Every second of the day I feel either numb or in so much pain that my body shakes and everything hurts.
Now that you are gone, I watch videos of you on my computer. I touch the screen, hoping that you will come out of my screen and magically appear in my room. You don’t. Instead I am flooded with hysterical sobbing that I cannot control. I don’t fight it. I take this time during the day to miss you so badly that I am inconsolable. I do this alone when nobody else is here. It’s better for me that way. I’m not ready to grieve for you in front of anyone else the way that I grieve for you alone. It is too painful for anyone else to see.
Yesterday, we did the usual stuff around here. We filled our day with errands and organizing things. I walked past your room and noticed your door was closed. I thought for a second it was you playing in your room, but then I remembered that you are gone. I opened up your door and peeked inside. It wasn’t you playing at all. It was Liam. He was sitting on your floor, alone, playing with your Star Wars guys. I cannot even think about this story without it destroying me. I asked him if he was o.k. He said he was, he was just playing. I let him be. I couldn’t even go and sit on the floor to be with him. I wish I could have, but I’m not ready for your room yet.
I went to breakfast with Tricia, Danille, Julie and Marisa yesterday. We sat at Taylors. The girls ate. I nibbled on some of Trish’s omelette and some of Danielle’s bagel. I sat with the girls and ended up crying about you, telling them that I just don’t know how we are all going to be alright. I wish I could say they had some words of wisdom; but they didn’t. And I’m glad they didn’t. That just goes to show what true friends they are. They know there are no words of wisdom for this and they know not to bullshit me. So instead, they sat and listened to me and got teary eyed instead. That was all I needed from them. After breakfast, I went with Danielle and Marisa to Kirland. All the book stores have disappeared around here so we had to go to the one out there. I wanted to get Liam and Quinn some chapter books to read for the summer. I missed you in the book store. I missed you as we walked past the fountain at Kirland. I remembered how the two of us would go there and I would let you run around in the water. I remembered how amazingly tan your skin would get from the sun. My little brown bear. So happy and carefree.
Liam and Quinn had a sleepover at Luca’s last night. Your daddy and I went out for Sushi with Uncle Jay, Charlene, Kenny and Stacy. I was sitting there, trying to enjoy the ambiance as hard as I possibly could. Good people, food, and atmosphere. I looked up and saw one of the doctors from PCH that works in the clinic. I cannot remember her name; but I’ll never forget her face. She was supposed to help us through transplant. I told you that you are everywhere. Stacy was trying to talk to me and I told her I couldn’t concentrate as I had just seen somebody from PCH. I needed a minute to compose myself and to talk myself out of running out of the restaurant screaming bloody murder. I sat and told Stacy how even sitting at dinner just seemed wrong. How could I be out, trying to do something normal like eating dinner when everything is wrong? To do something even remotely enjoyable feels like I am betraying you. I am hurting so badly inside that I should not be out in public at all. I feel like I should be standing in my imaginary hole in my backyard that somebody needs to dig for me so I can hide in it forever. I don’t want to be out, trying to eat sushi. But I know if I don’t, that is when the real trouble will begin. I know this so I talk myself into being brave and doing the things that are now so awkward and wrong to me. I do this to keep some sense of normalcy for you Daddy. So I can sit next to him in the booth and hold his hand. So I can make him feel like we are a part of something normal, together. I do this but I don’t like it. I wonder if I will ever be able to breathe normally again. I wonder a lot of things, baby.
That is all I can write tonight as I need my mind to shut off tonight. I’m having lots of anxiety getting your brothers ready for summer. I have to pull it together for them as they need me more than ever. I know this.
G’nite my little man. I love you. I miss you. Sweet dreams.
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
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
Today was a blur! Ronan
and I headed out around 1:00. Our first stop was Dylan’s Candy
Shop. He was in heaven! I let him pick out all of his goodies and
then we headed out to hit the city. We walked for about 5 hours and
ended up meeting up with Woody. To say that the city was busy is an
understatement. This city is still packed full of people. Ronan was
such a trooper and we had such fun exploring the city. I feel like
I know it like the back of my hand now. We got back to the RMH
around 6 and then I headed out for my run. I ran for about an hour
and a half, in Central Park and it was glorious. People everywhere,
I had my headphones blaring and every chunk of snow that came my
way, I kicked it as hard as I could and imagined it was Ronan’s
tumor I was stepping on and killing. I must have done this about 50
times tonight… it felt so good. After my run, I came back here
and fixed Ronan dinner. He ate so much and has gained so much
weight. He is back to being my chubby little monkey. Well, not
really chubby, but he is back to his normal weight. The nurses at
PCH would be so proud. He weighs more than he has since we started
this whole thing. It must be all the pizza;) He seems to be doing
fine without Liam and Quinn which is great. I was really worried he
was going to go into some deep depression without them. Woody and I
have really been enjoying spending some one on one time with him.
He has been keeping us very busy. Right now, he is on the ground
doing his push-ups. He cracks me up like not other! His energy is
never ending; and I am so enjoying him and how great he is feeling.
I’m soaking it all up while I can because I know these next couple of
weeks are going to be hard. That’s all for tonight; we are beat
around here. Sweetest dreams to you all. xoxo I took this picture
on my run tonight. Oh, how I love this city.
Favorite conversation of the night:
Me: “Ronan, you’re so nice.”
Ronan: “Thank you.”
Me: “You’re welcome.”
Ronan: “Mom, you’re so cute.”
Me: “Thank you.”
Ronan: “Your so welcome.”
I love his little voice so much. And that smile could melt your heart. I love that every night, he curls up beside me and holds my hand as he falls asleep. I love waking up to him each morning and his bright blue eyes, and how excited he is to wake up his brothers and start the day. Being with Ronan is like a piece of heaven. He is my little pea, and I am so lucky to be his pod.
Sarah came over early so I could go to my therapist appointment. It was a good one, as always. I always leave there more vunerable and with a flood of emotions running through me. I feel like it’s a cleansing of my soul that I really need though. After that, I ran some errands and came home to a happy Ronan who told me he missed me so much. He was all snuggled up in my bed with Sarah. As Sarah was leaving she told Ro she loved him and he told her he loved her too. So sweet.
Ronan is not feeling well today. He was really clingy most of the day. My dear friend, Gay, came over to help me pack. Thank GOD for her! She just comes in here and snaps her fingers, and bam!, it’s done. She is so much fun to be with, even when we are doing things like packing up bags. We got Liam and Quinn’s bag packed and Ronan’s. One more check mark off my list! Pam also stopped by and cracked Gay and I up the entire time with her funny stories about being at Sloan with her daughter and how important her flat iron for her hair and lip gloss were to her. It was her coping mechanism and I love it. Her daughter was having a major surgery done and Pam sat and applied lip gloss over and over again. I totally get it. I know I am going to be the same way. Anything to make the situation seem a little more normal. I was so happy and thankful for those two today. They made me laugh a lot which is something I needed today since I spent the majority of the morning crying over anything and everything. The anticipation of leaving her is enough to send me over the edge.
I also got to see Niki and Fernanda for a bit. They both buzzed by quickly. Again, so lucky for the friends I have. They keep me going because I can see how much what we are going through has changed them. Their lives will never be the same just because of the kind of people they are. That shows me what amazing hearts they have. All of my friends are this way; they are the one’s I keep closest to my heart. I will keep them there for the rest of my life.
Woody and I had a good little pow wow tonight. He is always so interested in my therapy sessions and sometimes I don’t really feel like telling him about them. We got into it a little bit, in a healthy way. I told him what was going on and how I need to deal with a lot of this, on my own, in my own way. He gets it and is giving me my space. He also told me he knows exactly what I am thinking…. how my deepest fears are he is going to walk out on me like my dad did. He told me he will never give up on me and never let me down… like me father has. I know this about Woody; it is one of the main reasons I married him. No matter how much I push him away, because I am hurting, he won’t let me get too far. He has been really great about giving me my space, but also reminding me that we need each other. Before I met Woody, I was used to dealing with things in my life on my own by myself. When you are in the middle of a crisis, it is easy to revert back to that. I am trying not to; but I am very independent and stubborn and my mind tricks me into thinking I can do everything on my own. I am working on these things… I don’t want to go though this alone, but I also want my space. I am hoping to find a happy medium, if that is possible.
Woody and I always joke the Gwen Stefani‘s “I’m just a girl in the world,” is my theme song. So tonight’s song is dedicated to the Wooddawg. And the other love of my life, Gwen Stefani.
Take this pink ribbon off my eyes
And it’s no big surprise
Don’t you think I know
Exactly where I stand
This world is forcing me
To hold your hand
‘Cause I’m just a girl, little ‘ol me
Don’t let me out of your sight
I’m just a girl, all pretty and petite
So don’t let me have any rights
Oh…I’ve had it up to here!
The moment that I step outside
So many reasons
For me to run and hide
I can’t do the little things I hold so dear
‘Cause it’s all those little things
That I fear
‘Cause I’m just a girl I’d rather not be
‘Cause they won’t let me drive
Late at night I’m just a girl,
Guess I’m some kind of freak
‘Cause they all sit and stare
With their eyes
I’m just a girl,
Take a good look at me
Just your typical prototype
Oh…I’ve had it up to here!
Oh…am I making myself clear?
I’m just a girl
I’m just a girl in the world…
That’s all that you’ll let me be!
I’m just a girl, living in captivity
Your rule of thumb
Makes me worry some
I’m just a girl, what’s my destiny?
What I’ve succumbed to Is making me numb
I’m just a girl, my apologies
What I’ve become is so burdensome
I’m just a girl, lucky me
Twiddle-dum there’s no comparison
Oh…I’ve had it up to!
Oh…I’ve had it up to!!
Oh…I’ve had it up to here!
Nighty Night! Sweet Dreams!
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.
Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.
We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.
Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.
Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.
My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.
My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.
Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months. And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.
To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way.