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

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Sad to leave, but have to go

The update is we are coming home tomorrow. I am scrambling, have been scrambling for a couple of days now, mentally, I was not ready to go back to Arizona. I feel like I’ve taken these past couple of days to get my mind wrapped around coming home. I feel like I am ready now. Who am I kidding, I am not ready at all. Everything about this trip has been so positive and I am beyond sad to leave earlier than expected, but we cannot fight the COG on this. The COG is the Children’s Oncology Group and they are who is charge of Ronan being on study. We have to stay on study, we want to stay on study, because we really are hoping that Ronan is going to be chosen for 2 stem cell transplants, instead of one. If we go off of study, we won’t have any chance of getting a second transplant, and after the research we’ve done, we really feel like this will increase his chances of survival. So, in a nutshell, the COG is bigger than the doctors and we just have to follow their rules. Hard for me because I really just want to give them the middle finger. I just want what is best for Ronan, and as I said before, I feel like letting him heal fully here is what he needs. But things change and now we are coming home.

Also, Ronan has developed an infection in his broviac line. He has been spiking fevers the past few days and they thought it was just due to surgery, but they tested his blood and one of the cultures came back positive. This is a minor bump in the road considering all we have been through. It is something that Sloan has under control and has been reassuring me that it is something that is treatable with antibiotics. Well, they started the first dose of antibiotics last night and as I was holding Ronan, I looked down and his entire head was red and he started itching it like crazy and screaming bloody murder. I looked at Mace and Tricia who were both white as a sheet and said, “Call the nurse, he’s having a reaction.” Sure enough, I was told, he had developed what they call “Red Man Syndrome” to the Vancomycin. The nurse came rushing in and told me they would start him on Benadryl to get rid of the reaction. I was pissed. I wanted to know why in the world I wasn’t told that this could possibly happen, and I was informed that it happens to about 60/70 percent of the kids that get this antibiotic. Gee, I wish somebody would have told me this little piece of information, just so I could have been aware of it instead of being scared to death because I did not know what was going on with my child. What if he would have stopped breathing or something?!? We were soon able to get it under control and thank god for Dr. Maze, who I was texting during this entire thing. He took the time to calm me down and explain everything to me. We had a not so good nurse last night who did not seem to know anything and seemed very nervous about all the questions that were flying her way. Other than that, the nurses have been incredible and so has the care. Last night was rough but we got it under control and were able to get Ronan settled down and back to sleep. His fevers have stopped and we will get one dose of his antibiotic tomorrow at 7 a.m. with the Benadryl before, which takes 2 hours. We will hop on our flight after we see Dr. La Quaglia and as soon we land in Phoenix we will have to go right to PCH so we can check in and get Ronan’s second dose of the antibiotic. He has to have it twice a day for about 10 days. All of the doctors here have reassured me that we can still start his chemo, even with the infection, as long as his fever does not come back. I’m even more mad about having to leave here now. How mad is Ronan going to be knowing that we are going home, but don’t really get to go “home” and he has to stay at PCH for about 10 days. It would have been so much easier to stay here. STUPID COG. If you can’t tell I’m a wreck. My anxiety is through the roof and my nerves are shot after these past couple of days.

I sent out an email yesterday to somebody who shall remain nameless, asking if there was any possible way they could fly us privately back home. Part of my panicking was the thought of putting Ronan on a flight. Within the hour, I got an email back, and then a phone call saying, absolutely, they could get us back to Phoenix on their private jet. No worries that is was so last minute, no questions asked, they were just so happy to help. I cannot say thank you enough to you, SB and Mr. B. You have just given us such an amazing gift in helping with keeping Ronan healthy. Thank you from the bottom of our hearts and I can’t wait for the day that I can personally thank you with a big hug and one of Ronan’s famous smiles. We are beyond grateful that there are such kind people in the world out there like yourselves. O.K…. SB….. I know you said no more thank you’s so I’ll stop. After one more huge, THANK YOU!!!

Last night was one of the most heart wrenching/fucked up/hilariously funny nights that I have ever had in my LIFE. Tricia and Macy (who now by the way are in LOVE with each other;))stayed at the hospital with me until about 1 a.m. Macy picked up Thai food (which was to die for) and we got some bottles of Sangria to go and smuggled them into Sloan. While Ronan slept, we ate, talked, laughed, cried, and laughed some more. Macy and Tricia got to see what my world is like on a day to day basis. Macy was bawling half of the time which in turn made me cry and our poor sweet roommate…. she had a crisis with a bloody nose, throwing up blood, and she was scared to death. She is the most beautiful 11 year old girl that I have ever met and she is fighting bone cancer. She has had 17 rounds of chemo and surgery on her leg. It was a privilege to share a room with her and her amazing mom. I tried to help with the bloody nose situation, since I have been there many times with Ronan. I went over and I tried to explain it to her and to calm her down but I wanted to just curl up and die. Her mom was on her bed holding her while her little girl sat and told me how tired she is of being sick, how much pain she is in and how scared she is. I started bawling, and when I finally went back to my side of the room, Tricia and Macy were bawling as well. In the 3 days that we spent with this little girl I heard her talk about all the things she appreciates in life and how she is so thankful for her “good days.” She is wise beyond her years and stronger than most adults. One of the most beautiful, inspiring, souls I have ever met with an amazing family who will no doubt, get her through this. Tricia, Macy and I bonded over so many things last night and Macy is now without a doubt, a friend for life.

I got all of our stuff packed up today while Tricia stayed at the hospital with Ronan. I came back to Sloan and Trish ran out to do some things. She is probably in the middle of cleaning our room at the RMH so we can be all ready to go tomorrow. Thank you, TT~ I don’t know what I would do without you. Macy came by to say good-bye to us and left me with a card. After she left, I opened it up and started to cry just from the words on the front of it. I’m an emotional wreak tonight. Ronan is depressed and told me tonight with his lip quivering, that he misses his brothers so much. Tomorrow is going to be awful. All Ro wants to do is to be home with Liam and Quinn but he can’t. I’m not even sure that the boys’ can come to PCH to visit due to it being RSV season. UGH. I don’t even want to think about how much Ronan’s heart is going to break going from one hospital to the next. Poor baby.

Tonight I say good-bye to New York with a heavy heart. I’m scared to go back to reality and back to my real world… I’m scared I’m going to lose the Maya that I have found while being in this city. As crazy as this sounds, this trip was one of the best trips of my life. Knowing that Ronan came here with a big job to do and it was so successful and positive, is maybe why it seems so hard to leave. I’m sure most of this is just my anxiety speaking. It will be wonderful to be home surround by my sweet twins, amazing husband, family and friends. I have missed you all dearly. I’ve just got to figure out how to keep this momentum going that I have found in this city. I will forever be in love with New York, Sloan Kettering, Dr. La Quaglia, Dr. Kusher, and the whole team of Neuroblastoma doctors. I will be back here next year to run the Marathon with Ronan in remission and waiting for me at mile 16. I love you New York! I feel so blessed to have had you heal myself and my baby!!

Goodnight world. Thanks for all of your love and support!!!

xoxo