Back to a reality I don’t want

Ronan. I am not content to go back to my old life, before you disappeared. The safe little life of an Arizona housewife. Thinking of going back to my life, before all of this, makes my skin crawl. Nothing will be the same again without you. That means everything has to change. I’m not sure what exactly that means yet but there now lives this fire in me that cannot be tamed. I died when you died. I say that all the time. I will never be the same person that I was, before all of this. I’m not sure I even liked that person. Well, I guess that’s not true. Sometimes I tend to be too hard on myself. I did like the person I was before all of this and I should stop and pat myself on my back every once in a while. I know I was a good person but being a good person will only get you so far in life. It can’t fucking cure cancer or save our troops. But I was doing a really good job at that life or so I thought because my life revolved around the love I had for our family and look at what that accomplished. I got 3 amazing little human being boys out of it. Including you. And you were totally the raddest kid that ever lived. At least in my eyes and that was enough for me. But looking back, I do see a person who had settled because everything was so safe and sound. Just the way I had always wanted my life to be. Coming from a childhood that was really unstable…. I swore to myself when I got married and had kids, I would never make them endure the things I had to. I met your daddy, had you boys and got very comfortable living inside of our little bubble. I just never thought the bubble would burst in the worst way possible. By one of my kids dying. I was the lucky one with an amazing husband and 3 beautiful boys. I so knew it was all too good to be true and it was only a matter of time before something happened. I just always imagined it would be something like getting breast cancer or your daddy getting prostate cancer because those are the things you hear about in the world. You don’t hear about babies being diagnosed with cancer. It’s the biggest dirty little secret out there. It’s a secret that nobody wants to talk about, even when it happens to them. It is the dirty little secret, that people just want to ignore. I hate to be the fucking cancer grim reappear here, but if I were reading this, and I had not lost a child from cancer….. I would be so fucking scared. I would be so scared that this could happen to me that I would have no choice but to take that fear and channel it into helping to be a part to change the face of this disease. Because as we know, kids can get cancer at any age of life…. even teenagers. I think about this all the time. What if I did not choose to speak up about this and Roforbid, Liam or Quinn ended up developing childhood cancer later in their life. And I had watched you die from it, but did nothing about it which in turn, resulted in the same awful treatment/statistics/outcome for Liam or Quinn. Could you even fucking imagine? That would be so unacceptable. All of this is unacceptable. You dying is fucking unacceptable. And not speaking up about this is totally unacceptable here to help be a change in this so that someday, this does not have to happen to another child and another family. I know I don’t have a choice unless I just choose to throw in the towel and slit my own writs. And trust me, I’ve come pretty close to the edge Ronan. I still think about it all the time. But what good would that do anyone? It wouldn’t. So, I’ll sit here and fight instead. I’ll continue to fight for you little man until you tell me, enough.

The more I’m learning about childhood cancer, the more pissed I am getting. Why is it, that our children are getting the short end of the stick? I know any parent out there would agree that if they had to choose between themselves getting cancer or their child getting cancer, they would choose themselves. And if you choose your child, then you should not be a fucking parent. Or if you can answer this question and you are not yet a parent, but want to be a parent someday…. and you choose your child getting cancer over you…. you need to reconsider having a child. So, if we are all in agreement that we would rather have this happen to us, then our child or future children, why in the world is pediatric cancer the LEAST FUCKING FUNDED??? Because of lack of awareness. Plain and simple. If people everywhere, were aware….. things would be so different.

It’s been a lot of work being here. Not emotionally, because emotionally I feel stronger then I have since losing you. It’s been a lot of cancer/foundation busy work. I’ve been working my ass off, leaving the apartment at 7 a.m. and not returning home until really late at night. I wish I could say I’ve been living the high life of an awesome 30somthing New Yorker. Hardly. I’ve been eating, drinking, and sleeping everything childhood cancer related. I met with Dr. Mosse yesterday. She was kind enough to let me eat up much of her afternoon. It was strange seeing her but in the best way possible. I don’t want to go into too much detail about what went on, but to me that woman walks on water. I could sit and give you the run down on our 3 hour conversation about cancer, but it was so much more then that. It was a conversation full of more then science and statistics and to me, that meant the world. I knew it from the first time I met her when I watched the way you easily slid into her arms when she went to pick you up and exam you on her table. The words I sent to Fernanda after meeting Dr. Mosse for the first time, in the middle of your treatment will haunt me for the rest of my life. Before we left CHOP, you were running ahead of me with your daddy. I sent Fernanda a text that simply said, “It’s her. She’s going to save my son.” But then you know, we got “sold,” on Sloan. Your daddy swears the outcome would have been the same no matter which way we went because your disease was that bad. All I know is if that is the case, I would have rather had you in Dr. Mosse’s care then Dr. Kushners. I will never forgive myself for not listening to what my HEART told me. I ignored it and that was so wrong of me. So Ro… what’s the lesson in all of this? I think it is this: Dr. Mosse couldn’t save you, but she is going to save other kids who are in your same position. And even if she can’t right now, because this disease is so hard to figure out, at least she will do everything she can and she will do it with compassion, grace and dignity. I will support her. She owns a piece of my heart. The tiny piece that I have left. I don’t want to say never…. but as of now, Sloan Kettering and Dr. Kushner will never get support from us. Unless he makes some serious changes. I straight told Dr. Mosse yesterday that if I ever saw Dr. Kushner again, that I would kick him in the balls. I know, so appropriate of me but I know she understands. I’ll bet she’s never had a parent tell her that before. I so love being such a rule breaker. The other lesson here, Ro. Is to always listen to your heart. I am a huge believer in this. Even if things don’t turn out as you’d hoped or planned, knowing that you stayed true to yourself is something that you can never regret.

After I got home from Philly, I met up with a lovely little blog reader of mine who actually volunteered at Sloan while you were being treated there, Ro. I never met her, but she remembered you and your daddy and the way you ran around the halls of Sloan with your gun like you owned the place. Rachel has been a huge lover of yours and so when she heard I was coming to NYC she told me she would love to meet up with me. She got in touch with me a few days ago and we decided to meet up last night even though I was beat from the day I had with Dr. Mosse. I am SO glad I didn’t just go home after getting off of the train. Rachel met me at Penn Station and we headed out to grab some food as I was starving from not having eaten all day. We got to know each other over sushi and I fell head over heels in love with this 21 year old student who goes to NYC. She wants to be a pediatric oncologist and has so much heart and passion. She is funny, quick witted, caring and she put my crazy skydiving ways to SHAME! Talk about being fearless. The girl cliff dives, for breakfast. We spent the next 4 hours or so, hanging out like and I felt like she was my long lost little sissy. Although at one point I was reminded of what a mom I am because I said to Rachel, “Text me when you get home, so I know you made it safely.” She laughed and said, “You are such a mom.” I smiled and said I knew. I can’t wait to see her again. I am so impressed with the drive and heart of this amazing girl. I know what I was up to when I was 21 and it wasn’t trying to save a bunch of babies with cancer. She reminds me of a mini Dr. Mosse. Rachel actually shadowed Dr. Mosse for 3 weeks and was able to back up every good thing I had to say about her. Another little piece of the puzzle that is falling into place, right baby. I don’t believe in much in life anymore but I do believe in signs. And I have been seeing so many of them. All from you.

Today, I went over to meet up with Scott from Solving Kids Cancer. I feel like I am on the right path as far as educating myself on anything and everything that is childhood cancer related. I’m doing the best I can with my grief brain that still exists. There are so many pieces of the puzzle to consider and I have to make sure I am stepping back and looking at the bigger picture here while examining all the small details as well. As I have said before, I am not here to raise 100K for childhood cancer I am here to raise 100 million dollars or more. And I will not be flying in a private plane with it. I am here to do some serious damage. The world of pediatric cancer is not Vegas people; but the world seems to think that it is acceptable to gamble with your child’s life like it is. So all these parents are forced to gamble and the sad truth is, everyone loses in one way or another. When your child dies, not only does a parent lose…. every single person around loses. The loss of a child is so much more heartbreaking then losing a parent, aunt, uncle, grandparent, and don’t even get me started on the dog or the cats of the fucking world. Losing a child is the deepest pain that one can ever experience. It goes against the nature of everything that we know to be true. Turns out life is one big fat fucking lie and everyone is eating it up like it is free ice cream day at Hagen Dauz. I’m so full of this “life,” bullshit that I will continue to throw up everywhere until people stop gorging themselves to death and decide to wake the fuck up and actually make a difference in this society and this world. Has anybody taken a look around lately? Does anybody care that there is a fucking war going on and it’s not just in Iraq. There is so much more to worry about in life then missing an episode of your favorite television show.

Ro baby doll. I’m on a plane back to AZ. This trip was more then I could have even dreamed of. I found so many things here that I thought were lost forever. The biggest part of my trip was feeling like I found a bit myself again and feeling the strength that I know I have because of you. Turns out the time alone was much more needed then I realized. I’m an introvert by nature and I’ve always embraced this. New York City and the introvert Maya do really, really well together. New York City, is my heaven. I smiled so much on this trip and I smiled over the simplest things. Things like opening up my blinds and seeing the dark angry sky pouring buckets of rain on the sidewalks below. I didn’t even have to force that smile, Ro. It just happened. It felt so strange yet so good. It’s hard to live a life where more fake smiles exist then real ones. I came on this NYC trip with no expectations and I can tell you, my faith in humanity has been restored. How due to the kindness of some really generous people, I was reminded that there are a whole lot of people, that believe in me and no matter how important they are in this world…. they don’t need to take the time to scream it from the rooftops. They don’t need the recognition of what it is they are doing, which is helping others in their day to day lives. They don’t need their name splattered all over a magazine cover or in the papers. They just make things happen and do kind things because they are in a position to do so and that’s it. Those are the BEST kind of people in the world, Ronan. The one’s who do because they can. The one’s who are grateful for all that they have so they live their lives, quietly giving back to others when they are in a position to do so. I know these people know who they are in my life and I hope they know that they truly do make the world a better place. I am honored and so grateful for the quiet important people in the world. Especially the few quiet people of New York City who helped to save a bit of my sanity by being so generous with their time, smiles, lives, love, ears, and living spaces;) Thank you my little NYC lovelies. You all SAVED me.
I love you Ronan. I will never be better from losing you. This reality still takes my breath away. I’ve just got to keep on holding on to whatever it is that I have left. I have to keep moving forward for you. I keep telling myself you have a bigger plan for me, for you, for us. I’m just going to continue to follow my heart and listening to you. You will forever be my greatest teacher in life. I am so thankful for that. Sweet dreams little one. I love you so much. I hope you are safe. G’nite baby doll.
xoxo

Oh and P.S. Dear Assholes of the world who continue to talk about my language on here. I feel like a broken record but shut the fuck up and go away. If you do not like my language, then stop reading what I am writing. Take your small mind, elsewhere. Go save the unicorns, leprechauns, and fairies of the world. Nobody is holding a gun to your head and making you read this. YOU OFFEND ME BY BEING OFFENDED! It’s not like I’m standing in your front yard, screaming obscenities at you. But if I knew where you lived, I would be. I would do all while I held up a huge poster of a picture I have a Ronan which shows how badly his little body was beaten up by childhood cancer. And if you were still offended by my fuck words, instead of the picture in front of your face, I would have to beat you down with my sign the way that childhood cancer, beat my little boy black and blue. So, in the words of some genius out there…. “Fuck you you fucking fuck!!!!!!” STUPID FUCKWADS!!!!!!!!!!!!!!!!!!!!! And really, to sit there and say that because I say the fuck world a lot, I don’t have morals. WOW! That might just be one of the most awesome things I’ve ever heard. Well, if living a life full of morals means living a life the way you do, by judging other people then I am glad I don’t have fucking morals. I hope you like how the shit that you eat for breakfast, tastes. I’m going to stick to my breakfast of champions. It’s called waking up everyday and not getting to cook eggies for my 3 year old son anymore because he is dead from cancer. So instead of not cooking eggies, I’ll just sit around and say the fuck word instead. All while I don’t drink, do drugs, or abuse my kids. All while I try to figure out how to make this world a better place by helping to fight for these cancer babies and their parents. So sorry that offends you, asswad. Sweet dreams to you though. I hope your dreams of little puppies, are nice.

xoxo

Happy Fucking Mother Fucking Birthday

Ronan. I think I thought last year was a hard birthday for me to celebrate. I’m pretty sure I bitched and complained about it. I wish I would have known then, what I know now. That last year, was the best birthday of my life. I know we were in the hospital. I know we spent the day, in your bed, cuddling and playing Star Wars. I would have given anything, for that day today.

My birthday is almost over. Thankfully. I expected it to be hard. It was a day full of ups and downs. You would not believe all the beautiful things people did for me and said to me. It was a day where I had so many people try to make me smile. I smiled over a few things. It was a day full of lap dances, Miranda dances, Purple, Skulls, kisses, hugs, tears, phone calls, text messages, FB messages….. and so many beautiful people. Want to know some of my favorite things that I got told? I have a few that I can remember. Someone told me how it was just another day, right? And 2011 was officially the worst year ever. I exhaled when I read that. YES. THANK YOU. I’m being serious too, Miss J. I so appreciated your honesty. Somebody told me, “Happy Fucky Birthday!!” I laughed over that one. Thanks Sarah. Somebody wrote to me, “Happy RObirthday!” I loved that one. I got a lot of “Happy Fucking Birthdays!” I of course, loved those too. The card above is from one of the sweetest souls I’ve never met but I hope to someday. Her card made me smile from ear to ear. Thanks, K.

I spent the day trying to be kind to myself. Something that is hard for me to do now. I spent the day, just trying to get through the day, without you. I couldn’t believe I had to spend my birthday, without my best friend. I worried about you a lot today. I missed you so much. I cried a lot. I just wanted to today to be over. I told your daddy that I was so mad that I was having another birthday, and you were not. Dr. JoRo texted me to see how I was doing today. I responded back to her, “Bloody fucking fucking mother fucking awful. Shaking a lot. Going to try to run some of this off.” She said her birthday was always hell for her too. She said she was going to do some sort of kindness act for you tonight. That made me smile. I went for a run. It didn’t stop the shaking of my hands. Nothing does.

The whole not celebrating my birthday did not work either. It turns out…. the lovies in our lives were not having it. So the day and night was filled with more I love you’s, than ever. Your daddy picked up your brothers from school for me. My mind was in one of those moods today where it played tricks on me. I had myself convinced that you were going to come running through our front door yelling, “Happy Birthday, mama!” I sat and watched out the window for your daddy’s car to appear with you and your brothers in it. I imagined how you would all tell me that this was indeed a sick joke and you were alive and well. I imagined your daddy telling me he had brought you back to life, for my birthday. I know you know how this turned out. None of this happened. Not any of this, came true. Your daddy and brothers took me to AZ88, one of my favorite restaurants for dinner. I blew out my birthday candle. I made one wish. The same one that I make 50 times a day. I hoped, wished, and begged that you were safe. I put on my best face and thanked your brothers and daddy for such a nice birthday. We came home and we all snuggled in our bed and watched part of a movie. Quinn asked if the two of us could sleep in your bed again tonight. I told him o.k. We snuggled up, I kissed him goodnight, we said goodnight to you, and he soon fell asleep. I’ll sleep with him in your bed again tonight. It makes me sad that your bedroom is so empty now. I feel so guilty that it is so sad and lonely. I have been sleeping in your room just to mess up your little bed and to cuddle with all of your Master Yoda‘s and monkey friends.

I ended tonight with a phone call from one our favorites, New York Miss Macy. Fucking fuck I miss her. The phone call started off with me crying so hard, that I couldn’t even talk. It ended with us both in fits of giggles. Her ability to bring the laughter and sunshine out in me is a gift that nobody else has the capability of doing. She asked me what I was going to do in NYC. She asked me if I was going to visit Sloan Kettering. I told her I didn’t think so, unless I wanted to end up in jail. I told her I was pretty sure they had me on a watch list, after the letter I sent to Dr. Kushner. We cracked up at the thought of me wearing disquises, in order to get into the hospital. She said she knows I could pull off some awesome mustaches. We cracked up at the thought of this. She misses you so much too.

I’m going to end this tonight now, Ro. I miss you so much. I’m so sorry. I hope you are safe. G’nite, sweet dreams, I love you.

xoxo

Dear Loveliest of Lovelies,

Thank you all. For being so kind, sweet and thoughtful. Thank you for taking the time out of your day, to wish me a Happy Birthday, Unbirthday, Fucking Fucked Birthday, not a birthday, a Wild and Free Birthday, a RoBirthday, and all the other creative things you came up with. You made me smile through my tears. You made me feel loved. You made me actually feel which is hard for me to do though all the numbness. You all are the best RoFriends a girl could ever ask for. I know Ronan is so thankful for all of you. So am I.

I love you all.

xoxo

Rain from Ro

Ronan. So many people made today, not an awful day. Friends, family, strangers and even you. As much as I was dreading today…. too many things happened for it to be anything, but beautiful. For as awful as I was feeling inside, there were too many things in the Universe, spinning around, not in my hands… making today bearable. I survived today and even made it though the day with a smile. Something I don’t do very often anymore. Something I miss doing so very much.

The day started off normally. Well, kind of. I was tired from not falling asleep until early morning. I heard Quinn come into my room around 6 a.m., saying he had a bad dream. I had just fallen asleep a few hours earlier. I wrapped my arms around him and we both fell back asleep. It was 8 before we woke up and I thought about just staying in bed and keeping your brothers home with me today. I knew if I did this, that it would not be a good day. I would have ended up hiding in bed, and not coming out. That is something your brothers do not need to see and I do not need to do. It only makes me feel worse. I got up, got Quinn up and we rushed to get out of the house before school started. We barely made it. I dropped your brothers off and went to Hava Java to meet N and Fernanda for coffee. I found a table outside, which never happens; as that place is always packed. Fernanda showed up and N soon after. I just happened to get a table right next to Susan Levine. She came to visit us when you were there. Gosh, she is beautiful. She knows, N and said Hello. I went up to her and gave her a hug and I thought I was going to have to remind her who I was, but I didn’t. She remembered. Even in my running shorts, no make-up, baseball hat self. She still recognized me as your Mom. I tried not to cry and thanked her for her amazing Ryan House. It was strange seeing her today, on your 4 months, but it felt like it was supposed to happen. Like it was meant to be.

I sat outside with N and Fernanda. We talked and caught up. N had to leave after a short amount of time due to a work call. It felt nice just to see her face. After N left, I sat with Fernanda and we talked about how I want to go back to NYC…. to have a few words with Kushner. We both know it will not do any good, as we are sure he is not capable of dealing with an emotional, angry mother. I don’t care if I don’t get though to him at all. I just want that man to look me in the eyes and tell me he is sorry. How he promised things that he should not have, and that when he couldn’t deliver, he abandoned us. He owes that to you, Ronan. I need closure. It is something that I cannot do without. It is part of my healing process. It may seem stupid and trivial, but it is important to me.

As Fernanda and I were sitting outside, we weren’t really talking, we were just being. I do this with her a lot. As we were both just being, we looked up at the sky. It started to rain. Rain in September. Rain from Ro. The sky opened up and I swear it was just over Hava Java as the clouds were nowhere else to be seen. Fernanda and I both looked at each other and just sat, held hands across the table and cried. We both know the rain was from you. You know how happy rain makes me. It is one of my favorite things in the world. I felt the little drips of the rain, on my lips and the tip of my nose. Kisses from you. It was such a perfect moment. So simple and filled me with a bit of joy. The fact that I had this moment while Fernanda sat across from me, made it even better. I know you saw the two of us today. You wanted us to know that you are still around and that you are taking care of us now. I really believe this to be true. We sat with the rain and it stopped after a few minutes. I didn’t want to leave but had to get on with the day. Inferno Hiking was waiting. It wasn’t much of an Inferno Hike today. You out of towners are going to laugh when I tell you how “Cool,” the temperature was. It was only 101 today so the Inferno did not exist. I cannot believe I am even saying that. Anywhere else, and 101 would be boiling. Not here. It felt chilly today as I climbed the mountain in that degree of heat and not the 115 that I have been hiking it in. I got to the top and sat down on my bench. I actually laid down and cried my eyes out all while watching the most amazing clouds roll in and the wind thrash back and forth. It was really windy up there today. I listened for you. I talked to you and told you I love you. I hope you heard me. I stayed up top for a good 30 minutes and ran all the way back down. Right as I was ending my run, The Bravery song that I played for you last night, came on. So funny. So fitting. So you.

I came home, showered and the doorbell rang. I went to answer it and it was a delivery guy with the most gorgeous purple flowers. A card was attached, and said something about making this day brighter, but no name was signed. So, I have no idea whom these flowers came from today but I am going to say Thank You, anyway. So thoughtful, sweet, and made me smile. They are gorgeous. What’s even more gorgeous is the fact that somebody out there sent me these flowers, without needing me to know who they are. I love deeds such as this. That says so much about a person. So, lovely stranger or friend. Thank you for your kindness today. I love that no recognition was needed. But I’m still dying to know who sent them! If you want to tell, feel free to send me a little message;) If not, that’s o.k. too. I totally understand.

I headed over to see Katie at her boutique. I brought her a Green Tea from Starbucks and a slew of bracelets. She said her phone had been ringing off the hook all day and her email was flooded with requests for your bracelets. I could not believe it. I am still in awe of the support and love that is coming from all of this. I sat at the counter, while she rang up customers. I am surprised at how much at home I feel in Katie’s store and with her. I hardly know this girl, yet her store feels like a second home to me. So strange. I feel like I’ve known her my entire life even though I only met her last week. I am such a skeptic of people too and their intentions. I feel only good vibes when I am with Katie. I know she is helping me because she is just a good-hearted person; not because she wants anything from all of this. She has nothing to gain, she has no reason to put herself out there to gain anything. Her intentions are so true and pure. I love this. As I was sitting at her counter, while she was gift wrapping something for a customer, guess what came on while I was sitting there? Stevie Nicks, “Landslide.” I just looked at Katie and gave her a hard time about putting that song on, on purpose. We both laughed and then the tears started to well up in my eyes. We just kept staring back and forth at each other, both getting teary eyed, while trying to keep our composure in front of her customer. Katie yelled out, “O.K. I can’t even look at you right now.” I just smiled and wiped my tears away. It was such a funny moment. I left there shortly after to grab your brother and cousins from school.

I had a crazy house full of boys. Wild, funny, happy boys. I had 4 of your cousins over to play. 2 of them are staying the night. It’s been a really great night. I love nothing more than being surrounded by kids. It’s my happiness. I took your brothers and cousins to basketball practice. Your daddy is coaching their team again. I watched my two little hoopsters and what amazing players they have become. You would be so proud of them. After practice, your Daddy went to the ASU football game. I took the 4 boys and we decided to try a restaurant, “Beckett’s Table,” for dinner. We have wanted to try this place out for months now. I was so excited to go somewhere new, with my date of 4 boys all under the age of 8. All the boys were really excited too. We sat outside in this amazing weather and had the best service. A really sweet server came out after we had been there for about 30 minutes. We were the only one’s on the patio, eating, but she came out to say Hello and to tell me that she reads this blog. I was surprised, as I guess I kind of forget that I’ve put myself out there in such a way that strangers recognize me. I gave her a big hug and told her thank you. She asked if I Inferno Hiked today and I told her yes. She than said something about how she felt so voyeuristic about knowing all of this stuff about me and asked me if it felt weird. I told her I honestly didn’t think about it at all and I still think that I am really only writing to you, and that nobody really reads what I write. I told her how much I appreciated her coming up to me and saying hello, because I do. So many people won’t and that just sucks. I would rather have someone tell me they are sorry than say nothing at all. As I was gathering up the 4 best dates in the world, we walked out of the restaurant and I smiled and said thank you to the people who were standing by the kitchen. One of the managers chased me out to tell me that our dinner, was on them tonight. I tried to put up a fight but she just was not having it. I wanted to cry but I put on my brave face and told her thank you so much. The kindness of this big city, is really something remarkable. The chocolate covered bacon was amazing. Actually, everything was amazing. Thank you, Beckett’s Table tonight. It was truly one of the best dinners out that I have had in a VERY long time. We’ll be back, for sure:)

I missed you today and tonight, Ro. In everything I did. Even driving in the car. I looked in my rear view mirror today, at the place where you used to sit, behind me. It was empty and felt so wrong. I almost had to pull the car over to throw up. I can’t believe I don’t have you behind me anymore, throwing things at my head, squeezing toothpaste that you had found, all over yourself and smearing it on the windows. This is so fucking wrong. So unfair. So permanent. I still can’t believe that you are never coming back. I still feel like your Daddy is going to come bouncing through the doors with you. I still feel like I made you up in my head, because the pain of knowing that you were here, and are now gone, is just too much. People say this gets easier over time. I’m here to tell you, it does not. 4 months later, and the pain is worse. Your Daddy agrees too. Time does not heal wounds. If you survive something like this, you just learn to live with the pain. You learn to fill the holes here and there, but there will always be a big chunk of your heart missing. That is a fact. It does not get easier, you never forget, the pain does not become less over time. It stays with you, every second of the day until you just becomes used to it. It is just a part of the person you are. Pretty soon, you are so used to the pain of all of this, that you don’t remember what it felt like before. It is as if you have felt this way your entire life. Well, this is my experience anyway. To each his own.

Time to go baby. I love you to the moon and back. I hope you are safe. Sweet dreams, baby doll. I love you so very much.

Goodnight my lovelies. Thank you to everyone who texted me super early this morning to say they were thinking of me, for all the phone calls, FB messages, emails. smiles, hugs, random flowers and a really sweet dinner. I am in awe of all the love that surrounds us thanks to Ronan. Love you all.

xoxo

The beautiful stranger, life, death, and life again

Ronan. 2 steps forward, 3 steps back. Is that how this is going to work? That’s how I feel today. I had one of those days, where I feel as I can’t breathe without you. It started off the way it always does. “Good Morning, boys! Time to wake up. I’ve started your shower.” (insert happy face here)

Shower, teeth brushed, breakfast made, ….. wait. Where’s Ronan? I need to make his eggies. Oh. Ronan is not here….. but continue on anyway. Lunches packed, water bottles filled, dishes done, lights off, boys in car… off to school. Where are you? Because once again, you are not here. I always know this, but some days it smacks me in the face, harder than others.

Autopilot continues on. Boys dropped off, but I knew this morning, that I could not go home to an empty house. I took all of my “busy,” work and my computer to Starbucks so I could sit and get some things done. Coffee, couch alone, laptop out, headphones on, music blaring, and I did my best to ignore all the happy people walking around like sunshine was coming out of their asses. WTF you jerks. Don’t you know that my son just died of cancer? Why is everyone so happy and bliss? Don’t they know there are hospitals all over the world, filled with kids fighting cancer? Of course they do not. Why would they? It is much easier to live in,”The Real Housewives of Scottsdale,” than in, “The Real Housewives of Childhood Cancer.”

Just as I was about to fling myself onto the couch across from me, to strangle the two happy mommies, as they sat in deep in conversation in regards to our worlds problems….. “What are we going to do with all of our free time now that our kids are back in school??? “Yoga or Tennis?” mommy # 1 said. “Tennis has much cuter outfits. Let’s take up Tennis.” mommy #2 said. “I agree, but what am I going to do without my Nanny?” mommy #1 said. “I have to hire a new one soon, because taking care of a one year old, alone, is just too much for me. And it’s interfering with my Yoga.”

Deep breaths, I told myself. No judging. I closed my eyes as the conversation continued on… the screaming started inside of my head. And then she appeared. She, as in the beautiful woman, with the bald head, and hat on. She sat down right next to me. She looked like an angel. I touched her arm. The words, “Do you have cancer?” Just flew out of my mouth. Fuck. Did I really just say that? So elegant, Maya. I wish I would have just said to her, “Are you o.k.?” She smiled, told me yes. My next words were, “Are you going to be o.k.?” I wished they would have been my first. I’m still so very new to this world. I have no idea how to navigate it; and my bluntness tends to just organically take over. She told me she was going to be o.k. That they had caught her Breast Cancer at Stage 1. I felt a wave of warmth wash over me. I told her I had a bracelet for her and handed her an F U Cancer bracelet. I had my computer screen open, and your picture was on it. I then told her about you and how you, my 3-year-old, had just died of cancer. She looked shocked to say the least. I put on my bravest face as she sat with tears in her eyes and asked all about you. I did my best to tell her some of your story. It felt like another out-of-body experience. We sat for about 45 minutes and talked. It turns out, her little boy goes to the same school as Liam and Quinn. Such a strange, small world we live in. Such a coincidence. Or not. Such another sign from you. We exchanged smiles, tears, anger, and phone numbers today. I have a feeling I will be seeing her again. This story literally leaves me with my head spinning. Babydoll. I don’t know why this happened to you; but I know there is a much bigger reason than life. You were meant for so much more than just being on this earth. As much as I hate it, and would give anything to have you back here; I know there is something else. Watching all of these little things, that you are making happen, feels as if I am watching you being born, all over again. It often leaves me breathless, exhausted, scared, and vulnerable. But the “life,” part that you are creating, is going to be so beautiful. I just know it.

After I left Starbucks, I went to visit one of our lovies. I tried my best to sit still and articulate all of the thoughts I have swarming around in my head. I couldn’t even do it. My quietness crept in and took over. I am such an easy book to read. The quietness on the outside is always when I am screaming the loudest in my head. Our lovie knows this. Conversation went something like this:

Me: “Hi. I’m just sitting here, trying to figure out how I’m going to change the world.”

Lovie: “You are going to change the world. I have no doubt about that.”

Lovie: “What is going on with you? Why are you so anxious today?”

Me: (insert smartass reply here) “Um, I don’t know…. maybe because of the fact that my child is dead.”

Lovie: “No. That’s not it. There is something else going on. These past few days, your anxiety has been really high.”

Me:(insert another smartass comment here) “Fine. Maybe it’s because of this list. (throw yellow legal pad across couch) My shit list of 500 nothings, but everything, things that I have to get done.”

I tried to blame my anxiety on the “Shit List,” today, which has everything on it from buying toilet paper to writing Dr. Kushner a Fuck Off letter. The “Shit List,” of 500 nothings but everythings that are bogging me down. So many things that I don’t even know where to start. Did I really just not pick up our dry-cleaning, go to the bank, to the grocery store, today because I just couldn’t?? What the fuck is wrong with me that I could not complete these simple tasks today? Those things could have been easily done and checked off my list. I went Inferno Hiking instead; just hoping to run into that Pink Rattlesnake that Tammy told me about yesterday. I actually had a full on conversation in my head today with that Pink Rattlesnake as I was running up the mountain in 112 degree heat.

In my head, it slithered in front of me, showed me it’s fangs and told me it was going to bite my leg. I told that Pink Rattlesnake, that if it tried, I would kick off it’s head off and kill it because the world took you away, so now, I am invincible to any kind of pain. I know what it is like to feel the worst pain possible, so the pain inflicted by the Pink Rattlesnakes bite, would not hurt me at all. He would be wasting his time and his venom on someone who would feel nothing. I watched as the Pink Rattlesnake, slithered away down the trail to take cover under a shaded bush. I continued on my run up the rocky trail. I was almost to the top, where most people choose to stop, at the first bench. A man was sitting there. I took out my headphones and said hello and what in the heck are you doing up here, as nobody is ever out hiking when I am, in the middle of this heat. The man laughed and told me to come sit down next to him. I told him, no way…. that if he wanted my company than he was going to have to keep up with me and continue up the rest of the hill to the second bench. He got up and followed behind me. I told him that I was running up the hill, not walking, and that he’d better keep up. He did a pretty good job, all while managing to tell me that he had just moved here from Idaho, just got a divorce, he has 3 kids, used to live here when he was little. I listened, quietly, and didn’t really say much of anything. I focused on getting my butt up to the top of our place, as fast as I could. Mountain Mike said I was trying to kill him. I laughed. We got to the top, I did my breathing, pacing, and just being. Mountain Mike did all of the talking for about 15 minutes. I kept thinking…. fuck…. I’m going to have to say those words again when he asks about me. Sometimes I don’t feel like telling strangers about you, but then I feel like I am being dishonest about you, us and what has just happened. Mike asked me what my story was.

Me: “Well, you are basically looking at a human being, living life on this earth, in Hell.

Mountain Mike: “Why? Are you going through a divorce?”

Me: “No. My 3 year old son just died of cancer, hence the reason for the Inferno Hiking.”

Mountain Mike: “I am so sorry. You know, I feel like my divorce is a death. I was married to her for 25 years.”

Me: “Mike. That sucks. But you know what, I’m sure you will fall in love again and your heart will be repaired. Mine won’t ever be. EVER.”

I gave Mountain Mike one of your bracelets, told him to look you up, and then maybe he would understand a little more. I told him goodbye, it was nice meeting him, and I would see him on the way down. He started the trek down the mountain. I stayed at the top to do my talking to you. I stayed for about 15 minutes, put my headphones back on, and hauled ass as fast as I could back down to the bottom. I passed Mountain Mike again during my run. I told him to have a good day.

I was hoping the Inferno Hike would have helped to quiet my mind today; but it didn’t. I survived today somehow, but barely. I picked up your brothers from school, took them to Doctor Beth for a 2 hour individual session. Stacy came by to try to help calm me down over my “Shit List.” We went over everything I need to get done. She settled me down. After Dr. Beth we went to dinner with Daddy. I cannot even tell you how painful that was. We to to Wally’s and the owner goes, “How many?” I automatically said, “Five.” Fuck. I than said, “Actually just 4.” I keep forgetting that you are not behind me, running off, throwing rocks or doing something else naughty that I loved so much. The 4 of us sat at a table. It was just sad and pathetic.

We came home, played a board game as a family. We all got ready for bed. I tried to just sit and watch T.V. with everyone. I hate the T.V. now. I got up, headed into your room and just wanted to be alone so I could sob into your pillows, stuffed animals, and let your bed swallow me whole. I don’ t go into your room very often and tonight I so just wanted to sit in there, alone. But Quinn followed me. GODFUCKINGDAMNIT. I could not break down in front of him, I could not sit and sob for you, the way I so wanted to and needed to. Instead, I sat with Quinn quietly in the dark, held it all inside, and listened to him talk about how he used to love to sleep in your bed with you. I talked to him about you, let him love on me when that is so the last thing I wanted. I loved on him back, told him what an amazing little boy he was how I am so lucky to be a mommy to both him and Liam. None of it felt good or comforting to me. But as of now, very little things do. This is a hard pill for me to swallow. I am still so numb, sad, and in shock. Your daddy said to me tonight that he thinks the sadness from us of missing you is only going to get worse. I told him I agreed. For once, I didn’t try to argue back. He’s right. He knows too. We are all broken, Ro. I don’t know what to do with all of these broken pieces. Are they fixable? I don’t know. All I know is the pain today, was too much because I sat by and watched as all of us had a tough day. I can deal with my pain, but sitting back and watching your brothers and Daddy is so overwhelming sometimes. Just when I think I am strong, that I can get through this; it’s days like today that have me wanting to just throw in the towel. It’s days like today that I have to remind myself of you and how you lived your life. You never gave up. I have to use that strength from you, to survive days like today.

I have to go now, babydoll. I love you to the moon and back. I hope you are safe. I love you, Ro.

xoxo

The beautiful stranger, life, death, and life again

Ronan. 2 steps forward, 3 steps back. Is that how this is going to work? That’s how I feel today. I had one of those days, where I feel as I can’t breathe without you. It started off the way it always does. “Good Morning, boys! Time to wake up. I’ve started your shower.” (insert happy face here)

Shower, teeth brushed, breakfast made, ….. wait. Where’s Ronan? I need to make his eggies. Oh. Ronan is not here….. but continue on anyway. Lunches packed, water bottles filled, dishes done, lights off, boys in car… off to school. Where are you? Because once again, you are not here. I always know this, but some days it smacks me in the face, harder than others.

Autopilot continues on. Boys dropped off, but I knew this morning, that I could not go home to an empty house. I took all of my “busy,” work and my computer to Starbucks so I could sit and get some things done. Coffee, couch alone, laptop out, headphones on, music blaring, and I did my best to ignore all the happy people walking around like sunshine was coming out of their asses. WTF you jerks. Don’t you know that my son just died of cancer? Why is everyone so happy and bliss? Don’t they know there are hospitals all over the world, filled with kids fighting cancer? Of course they do not. Why would they? It is much easier to live in,”The Real Housewives of Scottsdale,” than in, “The Real Housewives of Childhood Cancer.”

Just as I was about to fling myself onto the couch across from me, to strangle the two happy mommies, as they sat in deep in conversation in regards to our worlds problems….. “What are we going to do with all of our free time now that our kids are back in school??? “Yoga or Tennis?” mommy # 1 said. “Tennis has much cuter outfits. Let’s take up Tennis.” mommy #2 said. “I agree, but what am I going to do without my Nanny?” mommy #1 said. “I have to hire a new one soon, because taking care of a one year old, alone, is just too much for me. And it’s interfering with my Yoga.”

Deep breaths, I told myself. No judging. I closed my eyes as the conversation continued on… the screaming started inside of my head. And then she appeared. She, as in the beautiful woman, with the bald head, and hat on. She sat down right next to me. She looked like an angel. I touched her arm. The words, “Do you have cancer?” Just flew out of my mouth. Fuck. Did I really just say that? So elegant, Maya. I wish I would have just said to her, “Are you o.k.?” She smiled, told me yes. My next words were, “Are you going to be o.k.?” I wished they would have been my first. I’m still so very new to this world. I have no idea how to navigate it; and my bluntness tends to just organically take over. She told me she was going to be o.k. That they had caught her Breast Cancer at Stage 1. I felt a wave of warmth wash over me. I told her I had a bracelet for her and handed her an F U Cancer bracelet. I had my computer screen open, and your picture was on it. I then told her about you and how you, my 3-year-old, had just died of cancer. She looked shocked to say the least. I put on my bravest face as she sat with tears in her eyes and asked all about you. I did my best to tell her some of your story. It felt like another out-of-body experience. We sat for about 45 minutes and talked. It turns out, her little boy goes to the same school as Liam and Quinn. Such a strange, small world we live in. Such a coincidence. Or not. Such another sign from you. We exchanged smiles, tears, anger, and phone numbers today. I have a feeling I will be seeing her again. This story literally leaves me with my head spinning. Babydoll. I don’t know why this happened to you; but I know there is a much bigger reason than life. You were meant for so much more than just being on this earth. As much as I hate it, and would give anything to have you back here; I know there is something else. Watching all of these little things, that you are making happen, feels as if I am watching you being born, all over again. It often leaves me breathless, exhausted, scared, and vulnerable. But the “life,” part that you are creating, is going to be so beautiful. I just know it.

After I left Starbucks, I went to visit one of our lovies. I tried my best to sit still and articulate all of the thoughts I have swarming around in my head. I couldn’t even do it. My quietness crept in and took over. I am such an easy book to read. The quietness on the outside is always when I am screaming the loudest in my head. Our lovie knows this. Conversation went something like this:

Me: “Hi. I’m just sitting here, trying to figure out how I’m going to change the world.”

Lovie: “You are going to change the world. I have no doubt about that.”

Lovie: “What is going on with you? Why are you so anxious today?”

Me: (insert smartass reply here) “Um, I don’t know…. maybe because of the fact that my child is dead.”

Lovie: “No. That’s not it. There is something else going on. These past few days, your anxiety has been really high.”

Me:(insert another smartass comment here) “Fine. Maybe it’s because of this list. (throw yellow legal pad across couch) My shit list of 500 nothings, but everything, things that I have to get done.”

I tried to blame my anxiety on the “Shit List,” today, which has everything on it from buying toilet paper to writing Dr. Kushner a Fuck Off letter. The “Shit List,” of 500 nothings but everythings that are bogging me down. So many things that I don’t even know where to start. Did I really just not pick up our dry-cleaning, go to the bank, to the grocery store, today because I just couldn’t?? What the fuck is wrong with me that I could not complete these simple tasks today? Those things could have been easily done and checked off my list. I went Inferno Hiking instead; just hoping to run into that Pink Rattlesnake that Tammy told me about yesterday. I actually had a full on conversation in my head today with that Pink Rattlesnake as I was running up the mountain in 112 degree heat.

In my head, it slithered in front of me, showed me it’s fangs and told me it was going to bite my leg. I told that Pink Rattlesnake, that if it tried, I would kick off it’s head off and kill it because the world took you away, so now, I am invincible to any kind of pain. I know what it is like to feel the worst pain possible, so the pain inflicted by the Pink Rattlesnakes bite, would not hurt me at all. He would be wasting his time and his venom on someone who would feel nothing. I watched as the Pink Rattlesnake, slithered away down the trail to take cover under a shaded bush. I continued on my run up the rocky trail. I was almost to the top, where most people choose to stop, at the first bench. A man was sitting there. I took out my headphones and said hello and what in the heck are you doing up here, as nobody is ever out hiking when I am, in the middle of this heat. The man laughed and told me to come sit down next to him. I told him, no way…. that if he wanted my company than he was going to have to keep up with me and continue up the rest of the hill to the second bench. He got up and followed behind me. I told him that I was running up the hill, not walking, and that he’d better keep up. He did a pretty good job, all while managing to tell me that he had just moved here from Idaho, just got a divorce, he has 3 kids, used to live here when he was little. I listened, quietly, and didn’t really say much of anything. I focused on getting my butt up to the top of our place, as fast as I could. Mountain Mike said I was trying to kill him. I laughed. We got to the top, I did my breathing, pacing, and just being. Mountain Mike did all of the talking for about 15 minutes. I kept thinking…. fuck…. I’m going to have to say those words again when he asks about me. Sometimes I don’t feel like telling strangers about you, but then I feel like I am being dishonest about you, us and what has just happened. Mike asked me what my story was.

Me: “Well, you are basically looking at a human being, living life on this earth, in Hell.

Mountain Mike: “Why? Are you going through a divorce?”

Me: “No. My 3 year old son just died of cancer, hence the reason for the Inferno Hiking.”

Mountain Mike: “I am so sorry. You know, I feel like my divorce is a death. I was married to her for 25 years.”

Me: “Mike. That sucks. But you know what, I’m sure you will fall in love again and your heart will be repaired. Mine won’t ever be. EVER.”

I gave Mountain Mike one of your bracelets, told him to look you up, and then maybe he would understand a little more. I told him goodbye, it was nice meeting him, and I would see him on the way down. He started the trek down the mountain. I stayed at the top to do my talking to you. I stayed for about 15 minutes, put my headphones back on, and hauled ass as fast as I could back down to the bottom. I passed Mountain Mike again during my run. I told him to have a good day.

I was hoping the Inferno Hike would have helped to quiet my mind today; but it didn’t. I survived today somehow, but barely. I picked up your brothers from school, took them to Doctor Beth for a 2 hour individual session. Stacy came by to try to help calm me down over my “Shit List.” We went over everything I need to get done. She settled me down. After Dr. Beth we went to dinner with Daddy. I cannot even tell you how painful that was. We to to Wally’s and the owner goes, “How many?” I automatically said, “Five.” Fuck. I than said, “Actually just 4.” I keep forgetting that you are not behind me, running off, throwing rocks or doing something else naughty that I loved so much. The 4 of us sat at a table. It was just sad and pathetic.

We came home, played a board game as a family. We all got ready for bed. I tried to just sit and watch T.V. with everyone. I hate the T.V. now. I got up, headed into your room and just wanted to be alone so I could sob into your pillows, stuffed animals, and let your bed swallow me whole. I don’ t go into your room very often and tonight I so just wanted to sit in there, alone. But Quinn followed me. GODFUCKINGDAMNIT. I could not break down in front of him, I could not sit and sob for you, the way I so wanted to and needed to. Instead, I sat with Quinn quietly in the dark, held it all inside, and listened to him talk about how he used to love to sleep in your bed with you. I talked to him about you, let him love on me when that is so the last thing I wanted. I loved on him back, told him what an amazing little boy he was how I am so lucky to be a mommy to both him and Liam. None of it felt good or comforting to me. But as of now, very little things do. This is a hard pill for me to swallow. I am still so numb, sad, and in shock. Your daddy said to me tonight that he thinks the sadness from us of missing you is only going to get worse. I told him I agreed. For once, I didn’t try to argue back. He’s right. He knows too. We are all broken, Ro. I don’t know what to do with all of these broken pieces. Are they fixable? I don’t know. All I know is the pain today, was too much because I sat by and watched as all of us had a tough day. I can deal with my pain, but sitting back and watching your brothers and Daddy is so overwhelming sometimes. Just when I think I am strong, that I can get through this; it’s days like today that have me wanting to just throw in the towel. It’s days like today that I have to remind myself of you and how you lived your life. You never gave up. I have to use that strength from you, to survive days like today.

I have to go now, babydoll. I love you to the moon and back. I hope you are safe. I love you, Ro.

xoxo

Fiesta of Tears

Ronan. Hi little man. I missed you so much today. We had a lot of things going on that kept us busy at the beach. I packed the car full of your favorites; Quinny, Liam, Macy, and Nana. We ran a couple of errands and stopped at Costco on the way back home. It wasn’t very exciting, but it was nice to be out. We had to hurry back to get your brother, Liam, packed to go to Washington to see Papa Jim. It was kind of a last-minute decision, but he really wanted to go. I’m trying to look at this as a positive thing, but I am mostly just upset about it. I’m upset in the respect that if you would have been here, we would all be there together. I am upset in the respect that we have to be separated from Liam. It makes me most upset that our family is now broken, damaged, and so sad due to losing you. This is the first time in Liam and Quinn’s life that they have ever been away from each other on a vacation. It all feels weird and wrong. Thank GOD I still have Macy here as well as the Kotaliks. Quinn is getting a lot of time with the girls in and he is eating it up with a spoon. I talked to Liam and he arrived safely. He sounded so excited to be there. Papa Jim will bring him back Sunday night and the will stay a few days with us. That will be fun. I only wish you were here to play with all of us. For a split second, I thought that you would be and I imagined you playing outside with him. But then I remember. The fucking one thing I want not be true…………is.

I hate cancer. I texted that to Mr. Sparkly Eyes tonight. Blubbering about how this is the first time in 14 years that I have not been home during the summer, how it is the twins’ first time being separated during a Washington vacation. How I hated cancer and how I was having a pity party. He replied back he does too and I am allowed to have as many pity parties as I need. He was so sorry. Everybody is sorry and sad. I hate that too. I hate the sadness that people now feel for us. I don’t want people to be sad around us. I want happy back before all of this existed.

Ro. I have to cut this short tonight as my Ambien is really kicking in. Also, that I have Macy and Quinn asleep beside me and they both seem so snuggly. I am tired. I miss you so much, boo. I hope you are safe. I’ll talk to you tomorrow. Please give Esther a kiss for me. Her mommy needs her tomorrow as it has been 2 months since she passed away. Make sure she spends some time with her tomorrow, o.k. Ro. I love you to the moon and back my sweet baby. Time to go into my Ambien coma now. The numbness is the only way I can fall asleep.

xoxo

Ronan. Hi baby boy. I think I started this yesterday. Last night maybe. I can’t really remember. Everything is blurry. I’m not sure how the days have been filled, but somehow they have been. I think a majority of my time is being filled with keeping Quinn busy and happy. Macy is doing a great job of helping me while your daddy and Liam are away. She is here with me still. I am so glad; she makes everything better. Today, we woke up a little late to the blaring sun. We decided to take Quinn out to Carlsbad to go Strawberry picking. We go there every time we are in San Diego during the summer. We were on our way, almost there, but I had to stop for gas. I decided to get a car wash too so we just ran through a little drive through one. We were sitting there and I was telling Macy how you used to love to go to the cheap drive through car wash in Phoenix with me. I remember it like it was yesterday. I started to cry and so did she. Quinn just sat in the back quietly and watched us. Thank god we were distracted by a very minor “the car wash just ate the gas cap of my car emergency,” otherwise, I think we would have both sat there forever, crying. We took care of our situation and headed off to pick our Strawberries. It felt so wrong to be there without you today. I remember the last time we were there, with you. I snapped pictures of you and your brothers in the Strawberry fields together. Today, Quinn was an only child and I watched him as he wandered through the day without you and Liam. It made my heart heavy.

Quinny is stuck to me like glue. And not in a good way. Poor little guy. He cannot leave my side for 2 minutes. This has been going on pretty much since your funeral. It has gotten really bad over here though. I am doing my best to be patient with him as I know he is so scared. I am trying to talk to him about everything as much as possible, but I have mostly just been smothering him with love and attention that he seems to be craving so badly. He worries so much about everything… especially when I leave to go on my runs which is pretty much the only time that I am away from him. We have a lot of work to do when we return back home as far as getting us all into therapy. I am trying my best while we are here to work though things with him, but there is only so much I can do. Having Macy here for as long has she has been has been really helpful with everything. She is so good with me, the boys, with the Wooddawg. She is scared for us though. She told me last night about how hard it is for her to watch us all try to go on with our lives. How unfair this whole thing is and how she see’s the toll it is taking on our entire family. She is watching me struggle to breathe every second of the day. She is watching as I continue to push everyone away. She is watching as I continue to drown. I know what I look like. I know what it looks like from the outside because I often feel like I am watching myself from above my own body. I see myself, from above, all the time. I see myself under the water, trying to get to the surface for air, but I never do. I watch the bubbles reach the top, but never my body. I watch my eyes and I can tell you that I can see them crying the tears I cry, while I’m trying to get to the surface for air. It never happens. I see my eyes, and the bubbles and the dark, black ocean. I see Ronan. I think about this a lot during my runs when I am having a hard time breathing because I am running so fast. It makes me run faster. So does the thought of my “slayer,” attacking me. I daydream about that…. about the day that someone will come out and grab me on one of my runs and they will kill me, but not before I have the time to send Woody a text message saying how much I love him, Quinn and Liam, how they are all my soul mates but I have to go and be with my other soul mate now. Which is you, Ro. I daydream about the day I will be reunited with you all of the time and I go over all the different ways in which it could happen. I’m not scared of it. Even when I picture my eyes as I am drowning in a sea of black water…. my eyes are still vibrant green and they are happy; even though they are filled with tears. I’m not scared of death anymore. I watched you die right before my very eyes. I know when my time comes, it will be a beautiful thing and you will be waiting for me on the other side. I cannot wait for that day, until I see your little face again. To kiss your sweet lips and to hear your squeaky voice. I miss you so much.

After the Strawberry fields, we had nowhere special to be. We decided to drive down PCH and enjoy the scenery and sunshine. We opened the sunroof, blasted Pearl Jam, and watched the ocean come alive with surfers, people, birds, and sparkling sand. We stopped for lunch at a little Mexican food place as none of us had eaten today and Macy said she could not take being on the “Maya diet,” for one second longer. We sat and ate and started to talk about you. We talked about Dr. Kushner and have decided that the way he was with us, is just his personality. He cuts off all emotional ties when he knows the outcome is not going to be good. He has had to desensitize himself so he can do his job, the best way he knows how. Unfortunately, that means often making people feel more awful about their situation and leaving them feeling let down, helpless, and regretful. He is like a robot as I’m sure he decided a long time ago this is how he was going to be when he decided to become a Pediatric Oncologist. That still does not make it right and I will  have my sit down with him and he will look me in the eyes. I promised Ronan and myself. I will get this done. Sooner, rather than later. I want to go out there in the Fall. I’m not going to put this off.

I was telling Macy about your amazing hair color and how I was so sad she never knew you when you had hair. We started looking at pictures on my phone of you and the tears started again. At one point, I was so consumed by guilt for being in San Diego, at the beach, when there are so many sick kids with cancer right now. I felt like running right to the nearest hospital just so I could be in the presence of all of those amazing kids. I felt guilty that I wasn’t doing something for them, at that moment. A lot of the guilt came from knowing I was sitting there with Macy and Quinn, with the sunshine on our backs, the memories of you flooding in, and how many kids are trapped in hospitals and do not have the freedom that we do. I don’t like this freedom I have without you, Ronan. It gives me major anxiety and I will never be able to enjoy it again. I look at people around me, who have no clue, and they are just so happy. Happy at the beach, happy together as a family, happy because they all still live in their little bubble of a world. It makes me want to throw up. In fact, I did throw up tonight after we came home. Just driving through the town of Coronado is enough to do me in. I get so sick to my stomach that we are here and you just died almost 2 months ago. FUCK. July 9th is coming up soon. It will have been 2 months since you passed away. That is not going to be a fun day. Please watch over me on that day, Ronan. I know you do everyday, but especially on that day. I hope you were with Esther last night. I wish I would have dreamt of you two, together. My dreams are black and empty. Just like my heart.

After our fiesta of tears, we hopped back in the car and continued on our way. We ended up pulling over in Del Mar to enjoy the amazing beach. Quinn, Macy and I all held hands and ran to put our toes in the sand. It was such a gorgeous time of day and the beach was breathtaking. Quinn took off, alone, and went to find some rocks. He never does things alone and I could see the sadness on his face as he had to do all of this without you and Liam today. He soon came over and asked if I would help him. I said of course and off we went. We ended finding some really pretty rocks for his collection which he is so into right now. He was so proud of them. Macy and I could have eaten him up with a spoon today. He really is everything, kind, sweet, and full of nothing but love. As I was getting my purse out to pay for parking at the beach today, Quinn goes, “I have money in my wallet, mom. I can pay for it.” Cutest thing ever. He has saved up his money and has offered to pay for anything  and everything. I keep telling him no, to save his money, but I know how proud it would make him to buy a little something for me. I’ll let him leave the tip at a restaurant or buy me a coffee soon. What a gentleman. Some girl is going to be very lucky one of these days.

We finally got home around 7:30 and everyone seemed pretty tired. We put in “The Wedding Singer,” and watched it together. Now, Quinn is in the middle of Me and Mace. They are snuggled up together so sweetly. Macy is like the sister I never had; but I should have. I totally have that sisterly connection with her and it has always come so naturally to us. I swear I’ve know her in a past life as well. Maybe we were sisters then. There has to be something….. the way we met, and had an instant bond. The way Ronan loved her so much and we all know how picky he is about people. He took to Macy instantly too. He knew Macy in a past life too; I’m just sure of it. I feel like the new people I’ve really, truly, deeply connected to since all of this, are people that Ronan and I have both known before. I’ve got my list….. there are about 10 people on it. I will forever hold these people close to my heart as I consider them family now. It’s as if I have a whole new family, thanks to Ronan. Just another one of his little gifts he has left behind. You, my son, amaze me everyday.

Alright my little man. It’s late and Macy told me I needed to go to sleep early tonight. Early means 2 a.m. not 4 a.m. I’m going to snuggle up with them now. I wish you were here to snuggle with us. I miss you baby. I hope you are safe. Sweet dreams my favorite blue eyed boy. I love you, Ro.

xoxo

  

Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo

 

The ocean didn’t swallow me whole

 

 

 

Ro baby. One of our favorite movies is on. “The Fantastic Mr. Fox.” This is the first time I’ve watched it without you. Quinn is sitting next to me, eating a sandwich I just made for him. It is late but we are still awake. Daddy and Liam are asleep out in the other room. Quinn and I wish you were here with us watching our movie. You used to crack up at it, which in turn would make us crack up. There is none of that now. Watching this movie will never be the same again.

Did you see us today? I sat and wondered if you were watching us. I wondered if you would have been happy to see me smile. I smiled today while I watched your brothers play in the pool with their cousins. They laughed a lot and there was a lot of wrestling and horsing around. They looked so happy. As I watched them, I was overwhelmed with a mixture of happiness and sadness. It made me happy to see them so happy, but it also made me sad. How can they go on, how can the laughter continue without you? I know it is a beautiful thing and I know it doesn’t mean they miss or love you any less. But it still felt wrong to me. Will it always feel this way, Ro? I hope not. I hope someday I will learn to feel happy again and not have to sit and second guess it and not have to feel guilty about it. It still feels like I am betraying you.

I spent the day with your brothers. We enjoyed the sun. I went boogie boarding in the ocean. I ate a bit for you too. I tried to soak up the time with your brothers. I am watching them form a new kind of relationship now. They seem to fight less and love more. They seem to be aware of how lucky they are to have each other. They seem to be developing an understanding of how precious life is and how we have to make the most of everyday. They are being respectful and there is less sass and chaos. We are getting them back into a stable routine which they are thriving on. I know how important structure is, how important our family time together is to them. I know how much they have missed it. I’ve missed being able to give it to them too. I won’t say it feels good, because nothing feels good yet. But it gives me a purpose in life which I really need right now. Knowing that I have to work hard to help them get through this is something I feel so lucky to be able to do.

I went on my nightly run on the beach tonight. It hurt and I ran hard. I ran with a lot of anger tonight. Guess who I was angry at tonight? Everyday it is somebody or something different. Tonight, I directed my anger towards Dr. Kushner. I know, so not fair and so pointless. I know he is a good doctor, Ronan but I am pissed about the way he ended things with us. It wasn’t right and someday I am going to write him a letter and tell him all of this. I wrote it in my head tonight on my run, but I don’t have the energy to sit and have it out with him now. The way he sent us off, without even giving us a proper goodbye; I’m sorry it just doesn’t sit well with me. And why didn’t he look me in the eyes, Ronan. I don’t care how badly he felt; the fact of the matter is he wasn’t the one who had just been told in not so many words that there was nothing else that could be done for you. Nobody was hurting more in that room than me. He just sent us on our merry way and had his freaking assistant call us the next day to tell us he thought we should go to Chop. That will never be enough for me and it will never sit well with me. He owed you more; he said he would fight for you and not give up. He did give up and that is not right. Someday Ronan, I will fix this. I will make sure he never forgets you and I will give him another chance to make things right. I know he has this in him and although it may seem so pointless, it is not to me and I know it is not to you. I need closure in so many ways and this is one of them.

Did you see me after my run, Ro? It was such a long and dark run tonight. I still had so  much energy running through my body so guess what I did?? I went down to the beach, threw off my shoes, my hat, my shirt and ran into the black ocean. I swam in that deep, dark ocean until I could now longer breathe. I waited for it to swallow me up, but it didn’t. So, I swam out as far as I could and let the strength of the waves carry me back to shore. I did this for about a half an hour. The beach was empty, the ocean was mad, and I screamed and cussed at it until I physically could do no more. I told the world to fuck off for taking you away from me. I told the world that I was going to kick it’s ass. I told the world a lot of things tonight. After my swim, my mind calmed down a little bit. I think it was the physical exhaustion that kicked in and did it. I did it for you tonight, Ronan. I swam in that dark ocean because I am lucky enough to be alive and I am lucky enough to be able to do something like that. You will never have the chance. So tonight, when I jumped into that water, I took you with me. I wasn’t scared because we did it together. I wanted you to feel the coldness with me. I wanted you to be able to do it too. Everything I do in my life, it will be with you. I will always take you with me, Ronan. Just you and me, Ro. Just like you used to always tell me. You’ll be with me everywhere I go and with me in everything I do. I promise you that.

Alright my little monkey. That is all for tonight. I hope you are safe. I hope you always feel the love surrounding you. There is so much of it in the world for you. I miss you so much. Every second of every day. G’night my love.

Hello you lovely peeps. I hope you are all well. I just wanted to add a little something tonight before I drift off into my restless sleep. As much as I try to keep up on all the comments on here, I can’t. I try to do my best and I love what you all have to say. I checked them first thing this morning which I normally never do and something was written about how a certain person wished the lesson I would have learned through all of this is that there is no such thing as the perfect family. That there is no such thing as having it all. This remark has bothered me all day. Who is it who decides such a thing? To me, perfection can have a million different meanings. To me, I know what the perfect life was because I had it. To me, the perfect life was very simple. A roof over our heads, two parents who are madly in love with each other; who created a very safe and loving environment for our 3 heathy boys. I am living proof that the perfect life can and did exist until Ronan got sick. I now look around and I see all of my beautiful friends and I know they all know that they have the perfect life due to what we have just went though. I know they are all so thankful for the “imperfections” that they deal with on a day-to-day basis that mean nothing because they have a healthy family. My world would be shattered if I didn’t believe that a perfect life does still exist for some people. I have no doubt that my definition of perfection will now become different because Ronan is gone; but I still feel so very lucky. For going through such an awful thing, I look around and see perfection in my husband and my twins everyday because they are full of love and health. After looking up the definition of perfection, I still stand by what I say. It’s sad to me that somebody wishes the lesson I would have learned from all of this is that perfection does not exist. A better lesson for me to have learned through all of this would have been to open up my heart and embrace all the love that surrounds my family. To open up my mind to a world full of imperfection and to try to make a difference. To just be me, which is all I am trying to do to get through this thing called life. Perfection does exist and I had it for 4 blissful years. I will fight for the rest of my life to get pieces of it back here and there because that is what Ronan would want. He would want me to fight for the perfection that existed in our family. He would not give up on me and I have a slew of the most perfect friends who are here to help me achieve this. Perfection is real, perfection can have many different meanings. Perfection to me means not taking a thing for granted and living with the most love in your heart that you are capable of. It means stopping at nothing to get it until your heart is fulfilled in the way mine was when we had Ronan in our family.

I love you all; even the one’s on here who try to knock me down because lord only knows why. It’s not going to happen. I have a message to send and a job to do and if you’re not with me, or you just want to say hurtful things, then please stop reading this. I’ve done nothing except love and fight my hardest for a little boy who deserved so much more than what he was handed in life. If this offends you for some reason, I’m sorry. This is my life, my feelings, and my Ronan.

That is all for tonight. Love and blessings to you all.

xoxo

The oldest definition of “perfection”, fairly precise and distinguishing the shades of the concept, goes back to Aristotle. In Book Delta of the Metaphysics, he distinguishes three meanings of the term, or rather three shades of one meaning, but in any case three different concepts. That is perfect:

1. which is complete — which contains all the requisite parts;
2. which is so good that nothing of the kind could be better;
3. which has attained its purpose.[4]

Learning how to live, half alive

Ronan. My heart is still heavy. My mind is still a mess. I didn’t cry today though. I have no doubt that my pillow will be soaked tonight when all is quiet and the memories of you trickle in. Night time is hard. I fall asleep and wish for you to wake me up with one of your famous, “Good morning, Mom!” You were always so excited for our days. Back when you were healthy I would pretend I was still asleep just so I could listen to you run to my room after you had woken up to give me a kiss and tell me good morning. It was one of my favorite things in the world. You would never want to get in bed with me and cuddle; instead you would demand that I get up to make your breakfast and wake up your brothers for school. I was always happy to do this for you. Everyday with you was the best day of my life. I can’t believe I will never have that again. I would give anything for you, Ronan. I remember how when I would take you out, how many people would stop me to tell me you were the most beautiful boy they had ever seen. I used to joke with Tricia that I felt like I was with a celebrity when I was with you. We called you our mini Brad Pitt baby. You had an impact on everyone even before you were sick just because of the beauty that people saw from the outside. They didn’t even know the beauty you possessed on the inside. I still can’t believe you aren’t mine anymore. I still don’t understand why you had to leave. I asked Dr. Maze if he thought that you heard me as I was talking to you before you went… those last few minutes when I told you it was time to go. When I told you to come with me, because we were getting out of this place. He says he thinks you did, as many people say a persons hearing is the last thing to go. I wish I would have said more to you. I wish I could have told you everything I was feeling in my heart but that would have been impossible. I know you know how much I love you. I will never get over the fact that I alone couldn’t save you. I’ll always think that I let you down because I couldn’t fix you. I know there was nothing I could do as your disease was so uncontrollable but that guilt will never go away. I am so, so, sorry Ronan. I would have traded my life a million times over for yours. I think about this every single day.

I’m not sure what just happened…. except for while I am writing to you I am of course listing to Pandora. I have it on the Coldplay playlist. Right when the tears where pouring down my cheeks, this random song came on. One I have never heard before but here are the lyrics…….

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount I’m fixed upon it
Mount of thy redeeming love

Here I raise my Ebenezer
Hither by thy help I’m come
And I hope by thy good pleasure
Safely to arrive at home
Jesus sought me when a stranger
Wondering from the fold of God
He, to rescue me from danger
Interposed His precious blood

O to grace how how great a debtor daily I’m constrained to be!
Let thy goodness like a fetter, bind my wandering heart to thee
Prone to wander Lord I feel it, prone to leave the God I love
Here’s my heart, O take and seal it, seal it for thy courts above

Whatever. I’m still too mad to think this is anything. But I will say that the piano playing this song was pretty. I miss you so much. I know I tell you this all of the time, but I will miss you for the rest of my life. I worry so much about you. I still cannot believe you are safe and happy without us. How could that be possible? I know I took better care of you then anyone. You deserve to be with me still. Your daddy watches me and the way I sit and am still with my thoughts. He knows I am tortured. I actually said to him that we made a mistake with your treatment. We should have done this, we should have done that, we should have been more aggressive. I know I am wrong about this. Nobody knew what was to come. Your daddy talked to all the best doctors and they all agreed with what we were doing. I told your daddy we should have had you scanned after every round of chemo. Nobody would have done this for us. But this is the only way we would have known that everything was spreading so rapidly. The day of your last scans, at Sloan…. Dr. Kushner’s face will haunt me for the rest of my life. He knew you were going to die. He couldn’t even look at me, Ro. Walking out of Sloan, they all knew you were going to die. But I wish they could have told me, instead of avoiding me and my tears. I don’t think badly of Dr. Kushner at all. If I saw him today, I would give him a great big hug and thank him for all he is doing to try to figure out this disease. I guess I’m just having a hard time because I feel like I didn’t get closure with him. I feel like he owed you more than the send off he gave us. But I also get that he is a man. A brilliant man and an amazing doctor. And I am sure he feels like he failed us and that is a hard pill to swallow. I get all that. But I also get that you deserved more, little man. Because you are going to change the world of this disease and I know someday he will be telling you thank you, Ronan. I will make sure of this. You will not be forgotten by him. And someday, I hope to replace a new image of him in my head from the awful one I am left with. I don’t want to carry that around with me forever.

I drew your name in the sand tonight while I was on my run. I went for a run on the beach in the dark. It is the only way I like to run now. In the dark, alone, where I don’t have to look at anyone in the eyes and I don’t have to see all the happiness surrounding me. All of that stings so badly. I don’t know if that pain will ever go away. We used to be that family. The perfect family that had it all. We had it all because of you. Now we are all so wounded, so empty. Although I did hear your brothers laughing today. I played with them all morning. I tried to stay focused on them, but my mind kept wandering back to how different everything would be about our day if you had been with us. Nothing about our day would have been the same; you changed everything.

G’nite my little man. Everyone is asleep now. Quinn is right next to me, all cuddled up with your blanket, GiGi. I’m going to cuddle up to him now. See you in my dreams, baby doll. I love you.

xoxo

Hellllllooooo Philly!

I’m not scared yet. Is that weird? Because at this point I should be scared shitless. And I don’t need to point out the obvious for you all to know what it is I should be scared about. Maybe it’s because I’m too numb, still in too much shock, or in deep denial. But I honestly don’t think those are the reasons for my being fearless. I still have this insane feeling in my heart that Ro is going to be fine. Maybe every parent whose child is diagnosed with cancer feels this way. It’s survival mode perhaps? Whatever it is, I’m not going to question it and I am going to embrace it as much as I can. I’ve questioned so many things today. Why Ronan was chosen for this journey in the first place, but most of all why he has to fight so hard through it. He is fighting like I’ve never seen a person fight before in my life. I know this is a big part of why I can’t give up yet. As long as Ro is fighting, I will not stop fighting for him. How could I? Any parent put in this same situation would do the same thing 100% guaranteed. To give up now would be so cowardly. I have never been a coward in my life and I am not about to start.

Today was one of the most beautiful days I’ve ever had in my life. Fernanda picked Ronan and I up to go to the clinic at PCH. I cannot tell you how good it felt to be back there. Dr. Maze came to see us while we were waiting and I got to watch my friend and see the pain in his eyes. He puts on a very bad poker face even though he tried his best to give me his famous smile and everything is going to be o.k. look. He left after a few minutes and looked at me and told me he was sorry. I just sat and gave him a smile as that is all I could do. After he left, I sat and thought for a few minutes. I have no shame when it comes to telling him the things that come rambling out of my head so I sent him a short text that just said something like, “Please don’t tell me you’re sorry. I cannot have you give up on Ronan too.” He then replied that he would NEVER give up on Ronan and that is not what he meant. He just meant he was sorry that Ronan is in pain as it breaks his heart. I felt better after that as that man has been with us through this from day one. I know he will not give up on Ronan because he gets it. He knows Ro is different no matter how hard this is getting and he knows my child has the spirit of something that is unlike anything on this earth. Dr. Maze is not going anywhere and more mother fucking doctors should strive to be more like that man. Enough with the egos and the ” I am GOD” attitudes. Enough of this cowardly bullshit. Not naming any names, of course. That would be much too easy. Dr. Maze also knows Dr. Mosse and took the time to send her an email in regards to us. He thinks the world of her which is so very comforting to me. He is very good judge of character and the fact that he respects this woman so much, means everything to me.

We were soon called back to the clinic room where we sat for a while and Dr. Eshun, Ronan’s primary doctor at PCH, came in to see us. Another prime example of an amazing doctor who is full of compassion and heart. We sat and talked and the things we talked about were not easy; but not once did he break eye contact with me. That is HUGE in my book. It is a sign of respect and just pure hearted goodness. I asked him hard questions and he answered as honestly as he could. He gave me his warmest smile even though I knew he was sad. That mans smile could melt a room. I thanked him for being so kind to us and told him how much it meant to me that he had the courage to talk with me the way he did. He supports our decision and understands where as parents, we are coming from. I’ll bet he is the most amazing father. I can tell that about him. He takes all of this personally and has tried to guide us as best he could. We will always be thankful for that.

While Dr. Eshun was in the room, our social worker Marcia came to see us as well. She has been so supportive of us from day one as well. I’ve always known she was a special lady but today, she kind of blew me away. She was so hopeful and so supportive of what we are about to take on. She told me what a good mom I am and how proud she is of me. It felt really good to hear from her as I respect her so much. Her eyes were filled with so much light and love today and I know she believes. She believes in miracles and she believes in Ronan. She believes in our love as a family and believes he can do this. She is still standing by our side and is not going anywhere either. I am so thankful for this.

The next person I saw was, “A.” This was probably the hardest person that I had to face. I’m not sure why…. actually I am. It is because I am completely in love with that woman and I wanted nothing more but to come back to her with the most amazing news…. I did not want to come back to her this way. She sat with me, hugged me and held my hand for a long time. We talked about really tough things. Things that I think about on a daily basis, but I cannot go there yet. A is logical, realistic, and matter of fact. But this is why I love her so much. I know she is only telling me the things she is telling me because she wants to make sure I am as informed as possible and that I have thought about everything, every possibility, every outcome. She does this for me because of the love she has for our family. All that bullshit about doctors not getting personally involved with their patients is bullshit with A. She is fully invested and proved that by the way she ran out to our car today to chase us down to give us one last hug and kiss goodbye. Nobody at fucking Sloan would have done that for us. I think I may have set the bar a little too high with them. Don’t get me wrong, I still think they are one of the best hospitals in the nation. But they will never compare to my little PCH and the kind of quality care we get there. Today, I felt like I was floating on a fluffy cloud with all of my favorite people waiting for me with open arms. As shitty as the circumstances are that we were back, it filled me with the love that I have so been missing.

Dr. Maze also came back to see us again and say goodbye. We will see him soon and Ronan asked after he left if he could come with us. I told him I didn’t think so, but this time we won’t be gone so long so we will be back to see him soon. He smiled and told me that made him happy. Little love bug.

While I was waiting in the isolation room with Ronan as he ended up needing platelets and blood, I saw the woman who walks on water to me. Dr. Adams. I hesitated to chase her down but Fernanda was like, “Are you crazy?! You know that woman always makes you feel better!” Did I forget to mention that “Nanda,” as Ro calls her sat with me all day long? My darling, F. I don’t know what I would do without her. Actually, I do. I would not be getting though any of this and would be curled up in the fetal position somewhere. Anyway, as I was getting ready to chase down Dr. Adams I looked at Fernanda and said, “I can’t see her, my entire ass is hanging out of my pants!” I’ll have to back up the story on this one. I forgot to mention that I was wearing this pair of pretty thin seersucker pants today and when we first went to the clinic and I was getting Ronan out of the car, I dropped my cell phone and bent down to pick it up. I heard a big, “Riiiiiiipppppp.” WTF?!? I turned around to Fernanda and said, “Did my pants really just rip and is my ass cheek fully exposed?” Indeed they had. The only thing I could do was laugh and roll with it. I spent the entire day pulling down my tank top to cover up my bum as to not expose anyone to the beauty of my milkshake maker. You know, my favorite booty song…. “My milkshake brings all the boys to the yard.” Yup. I fully brought my milkshake to the clinic today and I don’t think Woody would have appreciated it if any boys came to my yard. Fernanda, of course had the problem solved as she had another pair of jeans with her. I threw those on and went down to see Dr. Adams. I peeked around the corner and there she was. I waited for her to see me before I approached her. She had no clue we were back and it took her a minute to register it was me. She looked at me for a few seconds and goes, “What are you doing here. I did not want to see you back.” I calmly explained the situation to her and she teared up and pulled me into a room. She hugged me, held my hand and locked eyes with me while we discussed everything. And I mean everything. She kept telling me that what matters now is the care that I am giving to Ronan, which is 100% my complete love and strength, but I also needed to let him know that we are all allowed to be sad because none of this is fair or right. She was 100% supportive of trying this MIBG therapy. We touched a bit about how his cure rate is now becoming slimmer and slimmer. I told her I knew all of this but I didn’t care if there was a 5% chance that he could beat this. I wasn’t giving up yet. She told me she knows what good parents we are and we know what is best for Ronan at this point. I don’t think I’ve said this before but just being in her presence almost scares me; but in a good way. I swear to god I’ve known her in a past life or something and I also swear to god that she is seriously an angel walking around on this earth. She has such a presence about her and is one of the most beautiful women I’ve ever come into contact with. When I am with her, it is as if she gives me the strength that seems to be surrounding her at all times. She has a very strong aura about her. I feed off of this and I actually felt really calm around her today. I always feel calm and at peace when in her presence.

We had our sweet Patty taking care of us all day. She is not even a nurse to me anymore; she is my friend. She sat with me, cried with me, laughed with me, and helped me with Ronan as much as he would allow. She helped me out to my car and carried all of our things. It was so nice to be back home today and I was so glad Patty was the one taking care of us.

Um, yes, hello. I could write a freaking novel tonight while on this red-eye. I should be sleeping but I have too much buzzing around in my head and to much to talk about today. I’m getting so sleepy but I want to touch on this woman Joanna who emailed me today and her email said please call me, I promise I’m not crazy. What the heck, I thought so I picked up the phone and called this lady who lives in Toronto, Canada of all places. Instant connection. She told me the most amazing story about something she had just experienced and swears it is a sign that Ronan is going to be o.k. I believe her. I cannot go into details because at this time, I am seriously about ready to pass out. This stranger picked me up off my feet today when I needed it most. We talked about fate, the timing of all of this MIBG therapy as if we would have started this any later…. Ronan would not be eligible for the antibodies that come after this due to a time period. She said maybe Dr. Kusher kicking us to the curb was a blessing in disguise because now we will start this therapy and if we get the response we are fucking praying our asses off for, Ro will still be eligible for the antibodies. We will cross that bridge when we come to it, but you all know I love a good fate story. Fate and hope are what I’m hanging on too.Thanks Joanna, for reaching out to me. It meant the world to me today.

Also, I am learning such lessons from a little 10-year-old. Not really lessons, but more like what it means to see this through the eyes of a very wise child. Mr. Luke Ashworth, my heart will forever be yours. Ronan’s cousin has been such a blessing to us. He loves my Ro so much and Ro loves him just as much. Luke gets all of this, as he is wise beyond his years. He looked at me tonight and goes, “Promise me you’ll never give up.” I looked at him and said, “Luke, of course I will never give up. I promise you that. I will never give up on Ronan.” We had our moment and I will never forget it as long as I live. He thinks about Ronan so much and is so worried about him. It takes a very special boy to be so concerned about something like this. I am so proud to have him as a part of our family.

This is all I can do tonight. Long enough for you all? Geez! Blabber mouth city could not shut up tonight. Adrenaline I guess. I’m in mama lioness fighting mode. One more thing I want to  mention…. Thought-out all of this I find strength in so many places, but one person in particular is always on my mind. It is someone I never knew, but he is one of my idols; Pat Tillman. I have called Ronan our mini Pat Tillman since he could walk. I often think about Pat and how strong-willed he was and just what an amazing man and role model he is to our family. We all worship him. I think about his strength and bravery and I channel this by thinking about him when I think I can no longer go on. He helps me put back on my fuck you cancer boots and continue to fight. I know if he were here and in a twist of fate, he were to meet Ronan, he would never give up on him. I feel like he is one of our angels watching down on Ronan wherever he is. Ronan reminds me so much of him… just the little I know of him from reading some books that have been written about him. One in particular by his mom. The things he did as a child are so similar to the spirit the Ronan embodies. So, Mr. Pat Tillman…. thank you for being the definition of what it means to be a real man and to fight for what you belive in no matter how many people tell you differently. You will always be a hero and a god in our eyes.

G’night my lovies!!!!!!! Or G’morning I should say!

So proud to have you all by our side and I will never get tired of saying that. You mean so much to us. CHOP here we come. Dr. Mosse, I have faith in you; I’ve known this all along. NOT GIVING UP. Who could give up on a fact like Ro’s?? Only the UGLIEST of souls.  And we don’t allow ugly souls on this blog.

We are here. We made it. I have not slept in 24 hours which is probably why my post was a little “hyper.” Adrenaline. In a turn of events, Ronan’s pain in his legs that he has been having, which has been horrific, is not bothering him at the moment. As soon as we stepped off the plane, he started smiling and told me he loved me so much. He has not complained once since we arrived to our room. I have a good feeling about this Philly place. I sent Dr. Mosse an email at 6:30 this morning telling her we had arrived, we were at her mercy, and would do whatever it takes to get Ronan started on this treatment as soon as possible. Not 10 minutes later she emailed me back saying no child should be in pain and that they will move his treatment from next week up to this Thursday. Now that is an amazing doctor. Talk about class, compassion, and heart. I knew this about her from the first time I met her. This is our time now. Things are falling into place and I am going to keep holding on to my belief of that. As Tricia dropped us off at the airport tonight and hugged me tightly she whispered, “Bring our baby home.” You bet your ass I will, TT. I promise you that.

Time to try to get some shut eye; although it looks like Ronan has other plans as he has set up a whole battlefield of Star Wars guys in our bed. Love my little fighter so much.

I hope you all have a beautiful day.

xoxo