I’m not dead, I’m just in New York.

tumblr_m2uzgvZW9I1qbge6eo1_500

Turmoil. A state of great disturbance, confusion, or uncertainty.

Ronan. I’ve decided that I live in a constant stream of turmoil. I have known this for a while. I am trying my best to learn to live with this as there is no outrunning it or getting rid of it. It’s not going away anytime soon. It will always be a part of my life, so I’d better learn to just accept it.

I’m in New York. I’ve been here for a few days. I took the Red-Eye out late Monday night. I can tell you I was honestly sad to leave your daddy and brothers. I hate that because of this new life, our family often has to be apart. It wouldn’t be this way, if you were still here. All I ever wanted in this life was our family, healthy, and together. I’m still pissed off that some fuckwad decided that was not o.k. The Red-Eye was a little miserable. I normally love it, but try being almost 8 months pregnant and getting comfortable on a flight while trying to get some shut-eye. Poppy was not happy. I kept thinking I was going to squish her, sitting down for that many hours and not really being able to stretch out. Of course I kept picturing the umbilical cord wrapped around her neck and the cause of her death being the Red-Eye to New York. Insanity often fills my mind and as always, I don’t fight it, I just talk my way through it. I arrived to New York with Poppy still alive and going crazy in my stomach. She seems to always be moving about. I was beyond exhausted and fell asleep as soon as I arrived in the city and my head hit the pillow. Thankfully, I didn’t have any meetings scheduled for Tuesday so I just rested the entire day. I met up with our little, Rachel for a quick dinner and we went to Bloomingdale’s to eat your favorite Fr-Yo, but that was my extent of going out.

The rest of my time here has been full of meetings. Lots of good meetings, interesting meetings, emotional meetings. For the most part, I’ve held it together quite well. I was a little emotional today during a meeting I had at one of the publishing houses. Somedays I can talk about you until I am blue in the face without breaking down. Today was not one of those days. It wasn’t too bad. It’s not like I threw my head down on the table and sobbed into my arms like I often do. Today just proved to me that I felt comfortable enough with the people in the room to let my guard down a little bit. I think it was actually a very beautiful thing. I love when I see in other people’s eyes the way they believe in you, in us, in our never-ending, crazy, intense love story. I saw that today and it is always such a powerful force to be reckoned with. I am always thankful for it.

After my last meeting, I popped over to Solving Kids’ Cancer to see my two favorites, Scott Kennedy and Catherine London. My two sidekicks in all of this because they get this in a way that most people do not. In a way that I wish they did not, but they do and now they will forever be a part of my soul and my life in this fucked up journey. I see myself when I look at them and it is always heartbreaking, but they are also two of the most beautiful people I’ve ever come across in my life. Our visit was short, but I was just glad I was able to see them at all. Even though my time here has been packed, seeing them is always a must.

This is all for my little update. I know it’s short, but I just mostly wanted to check in with you all to tell you I’m alright. I’ve been getting quite a few emails with people worrying about me because I haven’t posted in a while. You all are the sweetest. I am o.k. Just busy and I always try my hardest to unplug a little while in New York. It’s my own little time out to breathe for a bit. Thanks for checking on me, worrying about me, and loving me. You crazy peeps, you;) You all make me smile.

I love you, Ronan. I have a lot to think about. I am trying my best to really take my time with any decisions that will be made in regards to this book. I just want to make you proud. Sweet dreams, little man. I miss you. I love you. I hope you are safe.

xoxo

I Love You to the Moon and Back

Ronan. This is what happens when I am in this city. I feel alive once again. It’s the only place that I really feel this way. Away from the blinding bright sun. From all those fake plastic shiny trees. It’s only here that I feel like I belong. Where I can walk the streets for hours on end, at anytime of the day or night and I feel so alive. Where I can go to dinners with strangers and have the most stimulating conversations. This city that is so full of substance that it leaves me feeling fulfilled in a way that I don’t feel back at home. Back at home, a lot is missing. The biggest thing being you. I am making a 5 year escape plan. Well, I am making an escape plan. I’m not sure what that looks like as of now, but I have some ideas. I won’t leave AZ permanently as of now, for a couple of reasons. But I know I need to start thinking of some other options, so I don’t constantly feel like I am suffocating. I am very thankful for these breaks every once in a while. I am very thankful for the friend that I have here, that just lets me stay in her apartment when she is not using it. I could not having the guilt of spending money on an expensive hotel when I know I should be using it elsewhere as in doing things for you and your foundation. These breaks help to rejuvenate my soul and help to give me a little mental break. When I come here, there is no T.V. blaring. There is not a lot of answering the phone. There is no computer time. I tend to unplug from everything. It’s the alone time that I very much need. I cry a lot. Alone. It’s an emotional release that feels o.k. I like that I don’t have to hide my tears here. I like that I can cry and not worry who is looking over my shoulder, worrying about me. Sometimes, I just need a break from everything. Including my very supportive, very loving husband who just wants to constantly make sure I am o.k. and fix everything. Who I am so lucky to have, but even I know I need a break from the, “Are you o.k.’s.” “What can I do, to help?” “I’m here for you’s.” Sometimes I just need my badass solo time where I know nothing will ever be o.k. and I am strong enough to take my alone time to deal with that. The way that I need to deal with that, even if that just means getting lost on the subway for a couple of hours. I always do my best thinking and planning in this city. As I said before, I feeds my soul. I also always feel super close to you when I am here, which you know I love.

Yesterday, oh yesterday. Where do I begin? It was a busy day. It was a packed day. I had a lot crammed in to yesterday. I ran down to SoHo to meet someone for lunch. I had a couple of other meetings as well. I took the subway like that typical New Yorker girl that I have become. Someone even asked me for directions yesterday and I knew right where to tell them to go. That made me smile. I never know what the days are going to bring here which is one of the reasons I love it so much. I got a call from the Katie Couric show. They wanted me to come down to the studio around 4. Also, something had changed in regards to the show I was supposed to tape next Monday, October 22nd. I returned the phone call to Katie’s oh so lovely producer. “What can do to get you to stay in New York and tape your segment, this Monday?” I listened to her tell me what was going on, what had changed, how the show the I was originally scheduled to be on, had become so filled up with other things that Katie was not happy as she wanted our story to have enough air time. I tried to put all the pieces to the puzzle into place as far as what I needed to do, on my end. I know this is the way this insane world of television works. Everything can change in an instant. I called your daddy to ask him if he could please drop everything he had on Monday, to come out here with me. He had a packed day, but of course he made it work. So now, instead of taping the show next Monday, I will be taping it THIS Monday, October 15th.
I got to Katie’s studio around 4 p.m. I met with her producer and a few other people. I was not sure of what all I was to be prepared for. That’s one of the other things about this world… sometimes things just get thrown your way and you have to just roll with them. After chatting for a bit, I was feeling pretty comfortable. They told me they wanted to do a little interview but I had no idea of how intense it was going to be. I was taken into a small office with three twenty something year old boys. At least they looked to be about 20. They hooked me up to a mic, camera on, closed the door and I sat as they started setting everything up. At one point I think I said something like, “This is weird.” They all chuckled a little bit and said, “You’ve been interviewed before, though.” I said, “Yes, but not like this.” The next hour or what felt like 4 hours was an emotional roller coaster. I was not prepared for the questions. Questions that I think about all the time, but when I have to put my actual feelings into words, I sometimes have a hard time doing so. I did the best I could do. To break down in a room with three boys whom I have never met before in my life, left me feeling so vulnerable in the most vulnerable of situations. I, being the mom on the other end of the camera, sobbing over having lost something that can never be replaced. I did my best to talk about you, which is still so hard for me to do because my pain is still so raw and fresh. I had to stop a few times. They were asking about the dates of things and you know I cannot remember those things to save my life. My grief brain is still so very present that I often feel as if I have Alzheimer’s or something. After the interview I felt shaky but put on my best face to finish up what I had to do. The people that are working for the Katie Couric show could not be nicer or more accommodating. I got to see some of the behind the scenes stuff which was very fun and one of the boys, Josh, who was showing me around was absolutely delightful. It was a nice way to end a very hard interview. I left the Katie show and realized I was starving. I found myself in a little diner, all alone, drowning my sorrows in some french fucking toast. I sat texting your Mr. Sparkly Eyes like mad. I told him about my afternoon, he could tell how shaken up I was and simply sent me a text back saying, “Go easy.” I replied back with, “What does that mean? Go easy on the French Toast? I’m about to stab it to death. Or go easy on myself? You know I’m always my toughest critic.” He said, “Yourself, please.” Fine Sparkly. You win. I stopped stabbing the french toast and inhaled it instead. I went back to my little apartment and did my best to unwind. I fell asleep easily like I always do here.
Today, I met up with one of my little angels who floats around this city. We had the loviest of lovely lunches where I got to tell her thank you from the bottom of my heart for so many things. I have not spent much time with this angel on earth. We had a lunch full of so many, “Oh my gosh moments,” that I was so blown away once again, by all the people that you are placing in our lives. We talked a lot about life, death and souls. She is one of the few people who looked at me, bent down and kissed my belly and told me, “Maya, I cannot imagine how hard this pregnancy is for you. You are still a grieving mom, yet you have another life inside of you. That is so much to take on.” I was blown away. She doesn’t read this blog, yet she totally got it in a way that most people do not. That just shows me how connected she is to not only her own soul, but other people’s around her as well. It’s not often that I am truly surprised by people. Today, was one of those days. Our lunch was quick but so fulfilling. I left there once again, being inspired to do great things, just by the company that I was in. This person has made herself an incredible life and she has done it all with those two little secrets that I have mentioned before. Substance and passion. I’ve will say this for the rest of my life. If you have those two things in your life, the world can be your oyster. Once we parted ways, I was on a mission to find my outfit for the Katie show. It took me a few hours, but I think I found something that will look pretty cute. I’m at that really awkward stage of being pregnant where I either look pregnant or just really, really bloated. That should be fun on national television. I’m not too worried about it because it is what it is. Poppy is popping and I will just be thankful for this little one that seems to be growing by the day. I had somebody say to me the other night, “If this is a girl, how are you not going to name her Poppy?” I just said, “I don’t know. I’ve fallen in love with that name. It makes me smile.” I think Poppy Thompson is such a darling name. We will cross that bridge, when we come to it. I went to Bloomingdale’s for my little shopping adventure with also a side plan too. I did what I always do when I am in the city and go to Bloomie’s just to eat at 40 carrots where I always used to take you. I sat at the bar and ordered my food as I was starved. Some older lady came and sat right down next to me and proceeded to scream into her cell phone the entire time I was eating. Granted, the restaurant was loud but that was from all the patrons, enjoying themselves. Not from them RUDELY talking on their cell phones. The lady proceeded to scream into her phone and say things like, “You didn’t call me out of love. You called me to ask something of me! Did you watch the Debates? What kind of an idiot would vote for Obama again? He’s ruining our country! If you want to drive in my fancy car with me, then you do not just get to text on your cell phone the entire time! Learn some respect!” OHMYFUCKINGGOD. The lady went on the entire time I was eating. I so wanted to reach over, snatch the cell phone out of her and throw it across the room. I pictured myself saying, “EXCUSE ME! I’m trying to eat my Fr-Yo, with my dead son, and you are ruining EVERYTHING!” I didn’t though. I sat quietly and tried my best to tune her out. At one point I was doing my best to eat our frozen yogurt and the tears just started pouring. I quickly wiped them away, while trying my best to make sure my throat didn’t close up so I could swallow our favorite tasty treat. I was so sad, sitting there alone, without you. I finished my meal. Paid and got out of there not without looking for you around every corner. Not without remembering every spot we sat, stood and I took your picture. I remembered it all, so vividly.
I’m home now. Tucked away, safe and sound. Exhausted from the day, but thankful to be here, in this city. I love it like no other. I miss you. I love you. I hope you are safe. Goodnight my little spicy monkey boy. Sweet dreams. I love you to the moon and back.

Dear 11 Fucking Months. I think I hate you.

Ronan. This solitude thing… it’s alright. It’s necessary. I’m doing it as much as possible. As much as I can for still being among the living, while really being dead. That’s what I feel like lately. It’s o.k. It’s part of this process for me. For as much as I’m checking out, I am still checking in when I can with the people who love me the most. With the people who I love the most too. I’ve been spending most of the days, solo. Hiking for many hours. Trying to be mindful of the way I’m feeling and not trying to distract with busy, busy things. There is a time for that. It’s not now. Right now, it’s time to check in with myself and that’s about it. Right now is not the time for the business that usually consumes me. Thinking about the past few days I know a lot of things have gone on. I woke up this morning to an empty house due to your brothers staying the night at your Mimi and Papa’s. They were going to be gone all day long which I knew was more than I could handle… you know, the whole being home alone until the evening. I woke up and thought, “Fuck. This is not going to be a good day, if you are home until 5 or 6 tonight, in this quiet, empty house. I threw some things in a bag and headed out the door. I sent Dr. Jo a text that simply said, “Coming up there for the day to go hiking.” Up there being Sedona. Why not? It sounded like the perfect thing to do instead of a sad/lonely day at home. She told me to just come to her house when I got up there and we would go hiking, together. Even better.

I arrived around 11 to the one place that now feels like one of the safest places in the world to me. A place that fills me with solace and gratitude. The comfort of Dr. JoRo’s house and that beautiful place of Sedona that she lives. I am no fool. Without her I am quite sure I would not still be here. I’m not too proud to admit that she has pretty much saved my life. In a weird way I feel like she’s been waiting for me for a long time. Or rather, we’ve been waiting for each other. I’m quite sure we were supposed to meet in this life. Just fucking sucks it had to be this way. I’m just thankful I found her when I did because if I did not, I am sure I would be in a mental ward, doped up on 20 different drugs, because don’t you know, a pill makes everything better/go away. Fucking emotionally irresponsible bullshit that medication thing is. More on that later…

Dr. JoRo grabbed her expert friend/neighbor in all things Sedona/nature/trails to take us on a little adventure. It was a good 2 hour hike where we talked but in a quiet/respectful way. It as nice as nice can possibly feel. Much better than being at home, lifeless, in bed where everything hurts so much that I think the pain alone is actually going to kill me. We returned to her house where I gave her one last hug before she leaves for her trip to NYC. So wish I were going with her. Missing our favorite big city so much. After I left Jo’s I decided I was not ready to go home yet. I drove through Sedona to go on my own hike, with my non existent map. I found myself hiking through the trees, fighting with a lot of sticker bushes/ branches, and scaling the side of some huge rock to perch myself up on a cliff where I settled into a couple of hours of reading/writing/sitting with your blanket while the hot sun poured down on my shoulders. My own therapy for the day, I guess. I left Sedona and drove way too fast with the music blaring way too loud during the entire drive back to Phoenix. I let myself get lost in the world of Pearl Jam for a while which always makes me drive faster/miss you so much more.

I came home and your brothers were still gone. I jumped in the shower and decided I would meet Rita for a dangerous night out. We went to see “The Hunger Games.” This was totally dangerous for 3 reasons. 1) I never go to movies anymore. I have a hard time sitting still. 2) We went to some totally sketchy theatre (o.k. so not really… just downtown phoenix) 3) We went to “The Hunger Games.” A movie about kids killing kids. Or kids dying. Or if you have a dead kid, you should maybe not watch this movie. I didn’t really think about this, going into it. I didn’t really think about it until there was a scene where a little girl dies and they do such a good job making you feel it that I actually felt like I was the girl in the movie, kissing your lips for one last time and crying out like a mother who just lost her child. Feeling like the mother that I am who watched you die. I know what happens. I actually know what it really feels like in real fucking life and not just by watching it on a movie screen. Rita grabbed my hand and asked if I was o.k. I nodded yes as the hot tears slid down my cheeks. She held my hand until the scene was over and then asked if I wanted to leave. I told her no, that I was alright. I lied, but I really wanted to see the ending. It was a pretty good/entertaining in a Lord of the Flies kind of way, movie. One that I’m sure I would have loved before losing you because the reality of it would have never touched me, right? Yeah right. So we all walk through life, thinking. So thankful I don’t have that problem anymore, Ro. So thankful that I get to have you dead so I no longer know that I or anyone around me is immune to death. I fucking knew that before you. I talk to Jo a lot about how I always had a feeling that you were not going to be mine, forever. How I was never worried about you learning how to count to 100, how I never pushed education stuff on you the way I did with your brothers. I tell her I was always so happy and thankful for the exact moments we lived in. Not the next day moments. Not even the future. Just the present. Just when you were mine and I was yours in that exact second of the day. It made for the best/funnest life in the world. It made for the happiest life I’ve ever felt by just being with you. JUST BEING. There were no expectations. Everything was so pure and organic and real. It was just us and we really did whatever you wanted. You wanted to wash your trucks outside, naked, in the mud? Done. You wanted to rub your little dirty muddy hands all over our windows? Done. You wanted to spray our sliding glass doors with the hose? Totally! You wanted to color on them too? Alright! You want to stab our leather couch with a pen and make big holes in it, big deal, Ro. You were leaning/exploring/pushing boundaries the way you should have been. I was never going be the one to contain you creative mind. A mind that always seemed so much wiser than even mine. You knew what you were here to do. I truly believe that. I know you are still here, baby doll. It’s just the physical part of you that I miss so much.

Ronan. Holy shitballs I think I hate Easter. Actually, I don’t think I hate Easter, I know I hate Easter. Easter without you this year, sucked balls. And not in a good way. We didn’t celebrate Easter at all this year. We celebrated Feaster instead and it was awesome, for being not awesome. We spent the weekend hanging around the house. I cooked a Brisket and and taught your brothers about all things Passover. You cannot have a proper Feaster, without a little religion. So, we talked a lot about Passover and what it means. We went to our own church on Sunday which was in Sedona, at Oak Creek Canyon. We spent Sunday hiking, getting dirty, playing in the water and your daddy even jumped off the side of a cliff. We spent Sunday doing all things that you would have loved. I tried to have the best day possible by getting lost in the world of your brothers who seemed to have a wonderful time. I’m not going to lie. It was an exhausting day, for being as relaxing and peaceful as it was. There was not a better way for us to spend the day, but it was still brutal to spend our first/last holiday with you, without you. I was glad when the day was over and I was able to lay down and fall into my Ambien induced coma. I didn’t have a choice. Sometimes I just have all I can take during the day and fighting with my sleep last night would have thrown me over the edge. I fell into a black oblivion instead.

So, today is 11 months of fuckery. I spent it alone, on a mountain and at the car wash. I found myself at the car wash today and looking back now, as I sit here writing tonight, I can actually laugh at myself and the shit that happens to me on a daily freaking basis. Case in point, victim one today, Danny’s car wash dude.

-Danny’s car wash dude- “How was your Easter, Miss?

Me- “Shitty.”

DCWD- “Really? Why?”

Me- “Because I have a dead kid. Because my son is dead.” -insert flow of snot/tears here/dripping everywhere

DCWD- uncomfortable silence, “Ummm… what? Really? Well, um…. o.k. Well, are you o.k.? Like for real? Because you don’t seem o.k.

Me- “Oh my gosh. Um, yeah, totally o.k., I’ll really be fine.”

DCWD- “O.k… do you want your floor mats washed?”

Me- “Yeah, please. Thank you so much.”

You know what else happened? For the first time today, when some other dude at Danny’s Car Wash asked me how many kids I had, I said 2! I about threw up. I went to correct my mistake, but I couldn’t get the words out of my mouth and I did not feel like explaining myself because I knew I would end up in hysteria. So, I freaked out in my head instead and just walked away, in a daze. That’s when I was approached by the other guy and that’s when the “I had a shitty Easter and I have a dead kid,” came flying out of my mouth. I am surprised I was able to drive my car after that whole incident today. I came home, threw myself in our bed, and sobbed. Then I put on my clothes and went inferno hiking in the hot, hot heat of the day. After my inferno hike, I came home, showered and picked up your brothers from school. I took them for a snack and off to the batting cages where we practiced baseball and all things fun. I didn’t know trying to have fun, would be so freaking hard Ronan. I just want to bury my head in the sand. But I continue to keep trying, for the sake of them and nothing else. Because those little boys’ deserve to have a mom who has not checked out, for as much as I want to, I just can’t. We came home and I was so tired. I helped them with their homework and after having all I could take, I found myself in my freaking bed, once again. Crying. This time, Quinn found me. He cuddled up next to me, and asked me what was wrong. I told him I just missed you. He sat with me as I cried for a few minutes (no mom guilt here at all) and I then made myself get up. We spent the rest of the evening at Uncle Jay’s house (lifesaver) swimming, eating pizza, and watching the Suns game. Thank GOD for that Uncle Jay of yours. Your daddy joined us and this shitty 11 month day is coming to an end.

I’m tired of being tired. I’m tired of being sad. I’m tired of all of this shit in this fucking crazy world. It truly is insane, Ronan. I cannot watch the news/read the paper because of all the things that I just cannot believe are going on. Some lady flushed her baby down a toilet. Facebook just bought Instagram for a Billion dollars. Everyone and their mothers are getting their own “reality” shows. Nothing out there, makes sense to me. It all makes me angry. None of it matters. It’s all “stuff,” getting in the way of real reality like kids dying and parents struggling to stay alive and survive. And wait… why are all these kids with cancer still dying and still being over looked? Shouldn’t this problem be getting a little better? See what happens, when I take a break? A whole lot of nothing gets done. I did hear that Mattel is going to make the bald Barbie though. I have not read the details, due to being unplugged from everything but I hope it is true.

Dr. JoRo is in NYC now. She asked for a little list of some things she could for me, during her one day off. These are the things I told her to do.

1) Run in Central Park at night. Thinking she probably will not do this.

2) Visit Sloan Kettering and kick Dr. Kushner in the balls for me. (she could totally dress up like a Ninja and do this)

3) Eat Fro Yo at 40 Carrots inside Bloomingdales. (this might be a little safer and was one of our favs)

4) Eat Pizza at Delizia’s for us. (another one of our favs)

I miss her so much already. She is not a very big fan of our favorite little city. I am doing my best to make her into a New Yorker, without being there to actually do it. Next time:)

Alright baby boy. This is all for tonight. Yes, I’m still in hiding and I have still been hiking every single day for our month of mother fucking madness. And today, I was EXTRA dangerous and did not wear sunscreen. My inner rebel was loving it. I love you. I miss you. I’m so sorry. I hope you are safe.

xoxo

This slideshow requires JavaScript.

 

No news is good news, yes??

I find it impossible that I am even still standing after today. Let alone, writing this post. I’m not sure how I’m even awake at this point. I didn’t much sleep last night and we woke up early to get Ronan ready for his day. He was mad that I woke him up from his peaceful slumber and even more mad that he had to drink his contrast before we could head to the hospital for his CT scan. I power talked him though it, although he fought me the entire time. Ronan is such a hard headed little boy and after battling with him almost the entire day, I am mentally beat. There was a lot of distracting, playing, bribing, and threatening today to get him through what we had to do. I have am so glad to be in our bed and over with today and am not looking forward to tomorrow at all. Scan days are always brutal and I know 110% that I would have crumbled today had it not been for Fernanda. She was such a big help.

We arrived to the clinic and were told that Ronan needed platelets again because his were still very low despite the platelets he received yesterday. We had plenty of time before our CT scan was scheduled so we went and got his platelets started. While we were getting them, Ronan fell asleep on the little couch next to me. Fernanda and I sat and watched him sleep and quietly talked. We both tried to block out the sounds of the screaming boy next to us who was about Ronan’s age. The poor thing must have screamed bloody murder for a good half an hour. I felt so helpless and so sad for the child and parents. I told Fernanda sometimes watching the parents go through this is almost harder than watching the kids. It is a lose lose situation for everyone involved and never gets any easier to see.

After Ronan was finished with his platelets, we headed down to get his CT scan done. I must have been told by 5 different people that he needed to be ready for anesthesia, even though I told everyone that he didn’t need it today. We got down to the CT room and sure enough the nurse came up to me and on her piece of paper says the word, Anesthesia, in big red letters. As soon as I saw this I told her that Ronan would not need anesthesia today. She looked at me like I had three heads and said that she wasn’t told this but that we could try it without, first. We went back to the room and I put Ronan on the table as he clutched onto his Star Wars guys. I had prepped him all morning for how he had to hold still and how it was going to be a piece of cake, just like radiation. He understood the drill and was very excited that I was able to stay in the room with him this time, unlike RT where I had to leave him all alone. The whole CT scan took about 10 minutes. He held so still and I acted out a scene from Star Wars for him with his Clone Troopers and told him all about the secret mission they were going on with him. He smiled the entire time and listened with his big eyes looking up at the CT machine. I was so proud of him; once again. He truly amazes me with how brave and strong he is. When we finished, all the techs told them how great of a job he did and he gave them all knuckles as he walked out the door. Such a little Rockstar, my Ronan.

I’m not sure where the rest of the day went. We had to wait around forever to get Ronan’s MIBG injection for tomorrow’s scans. We ran out for a bit and went to Dylan’s Candy Shop which I am totally over at this point. Four trips there, in the past 3 weeks for overpriced candy and you cannot even move in the store due to it being jam packed with people. If I never have to see that place again, I will be so happy. And this coming from me, an avid candy connoisseur, is huge. I’m done with that place. After Dylan’s, Fernanda was about to pass out from being on the “Maya diet,” which consists of not eating, so I took her to 4 carrots to eat. I pretended to eat a half of a sandwich for her, but she busted me and gave me a very stern but loving talking to about my lack of food. Ronan and Fernanda ate which was all that mattered to me. I did take a small Fro Yo to go and ate the whole thing for her. That’s the best I could do today.

I asked a few times if Dr. Kushner would read the results of the CT for me today and I got put off which I kind of expected. Everybody reassured me that if there was something that was not good, he would have come to talk to me. I hope they are not eating their words tomorrow. I’m going with the no news, is good news approach tonight so I can hopefully sleep a little easier.

We got back to the RMH later this afternoon and Fernanda hung out for a while. I practically had to force her out the door and told her to get some rest even though she tried to say she was coming back later this evening. I was not having it as she needs her rest too. My friends, Ed and Diane who are in town with their two little boys came by to see us. We had been looking forward to seeing them all day. They came armed with enough toys for Christmas. Ronan was in heaven not only because of the toys, but even more so because he had two boys to play with. He should have been wiped out from today, but he ran around here and played with those two until 9:45 tonight. It was so good for him and made him so happy. Thank you, Ed and Di. You two and your boys were just what we needed after a long and hard hospital day. I am so blessed to call you my friends.

Alright my dears. This is all I have tonight. I hope you all had a beautiful day full of many blessings. Tomorrow is a huge day for us and I am going to be channeling all of your strength and love. Sweetest dreams to you all.

xoxo

Strangers on the Streets

Ronan and I slept about 9 hours last night. We both needed it as we were wiped out. After we woke up and got ready, we headed off to the clinic to have his labs drawn. He was not excited about going to the hospital today, but I promised him a trip to Dylan’s Candy Shop after. A little bribery works every time:) We went to the clinic, had Ronan’s labs drawn and I must have had my cancer brain completely turned on because instead of waiting around for his counts to come back, we just left. I don’t know where my head was today. I took Ronan to Dylan’s and then we went to Bloomingdales, Four Carrots, for lunch. I can thank my friend, Ellen, for introducing me to this spot. Ronan ate a ton and I let him have the worlds best frozen yogurt afterwords. He was in heaven. After a few hours out in the city, we started our walk back to the RMH. I looked at my phone and realized that I had missed a couple of calls from Sloan. I listened to the voicemail and it was one of the nurses saying that Ronan needed platelets as his counts were only 18,000 and they like to keep them over 30,000. Major cancer brain mush on my part. I said we could come back in, but I knew how upset Ronan was going to be. The nurse told me as long as we could come in early tomorrow morning, it wasn’t a problem. Good thing. Getting Ronan to go back to the hospital would have been a major ordeal. We came back to the RMH and I fed him dinner. We spent the rest of the evening playing in the playroom and then we came back upstairs to give him a bath. He didn’t nap today so he is pretty beat. He fell asleep about an hour ago and I am thinking he will be out for the night. We have an early day tomorrow so that is a good thing. Fernanda gets in at 6 a.m. and I cannot wait to see her. I could really use some of her amazing strength to recharge me right now.

While we were out in the city today I tried my hardest to ignore the looks we now get from strangers everywhere. The looks from strangers on the streets are now looks of pity, looks of sadness, and as strong as I try to be… these looks kill me. It is a constant reminder of what we are up against. Most people are extra sweet to us, everybody says how beautiful Ronan is, and I must have been asked 1o times today how he is doing. What am I supposed to say to this? I say the only thing I can; while fighting back the tears and plastering a huge smile on my face. I say he is doing great and is a very strong little boy. I am sure these strangers on the streets only have the best intentions, but all I want is feel normal for 5 minutes out of the day. All I want to do is to not be felt sorry for. I guess this is why I am so comfortable in our hospital environment. Being out in the real world takes so much energy and can be so draining. I feel like I am on constant guard to not only protect Ronan, but myself as well. When I’m out in the real world, with Ronan, my guard is up 110%. I wish I could tell these people, stop with the looks of pity, instead take this gift of mine and go and do something amazing in the world. Go make this world a better place because you are inspired by my sweet baby boy because your own problems aren’t half as bad as you think they are. I swear I’m going to start wearing a sign around my neck that says this. Ronan is something to be inspired by, not something to feel sorry for. Yes, he has a tough road ahead of him but he will win this fight and be an even more amazing of a human being because of it.

Alright my sweet friends. I never indulge in T.V. anymore but with Ronan sleeping soundly, I’m going to enjoy my favorite reality show, “Bethanny Ever After.” I love Bethanny Frankel and her show. She cracks me up. I hope you all had a wonderful day and have an extra sweet night. Love you all.

xoxo

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo