Just you and me

Ronan. Just another day without you. I wish I could tell you that I am o.k. But, I’m not. I’m just sad. I’m swimming in a sea of sadness and am barely staying afloat. This morning, I took your brothers to surf camp. I sat and watched them for the 3 hours and pushed them as they both complained about the ocean being too cold, etc….. I was the mean mommy that told them to suck it up. My tolerance for their complaining today was at an all time low. At one point, Quinn came in and didn’t want to go back into the ocean. He wanted to stop surfing for the day. I brought up you and how hard you fought for every second of your life. I talked to him about life and how important it is to not give up and to keep fighting. I told him how you would give anything to be living still and if you were having a hard time at something, that you would have never have given up. But life is not fair and now you don’t get to run around, never taking no for an answer, all while pushing every limit, every boundary that came your way. You were just born different from most people, Ronan. Your daddy and I say it all the time. You had a fire and such strength in your soul. That’s  why we were so convinced that you would beat your stupid fucking cancer. I’ve never met a boy stronger than you and I still can’t believe that everything ended so quickly.

After my “get your ass back into the water,” pep talk….. but in a much nicer way, Quinn finished up his class. I don’t know if I’m pushing too hard, but that’s just the way it goes. Your brothers need to learn a little something about fighting to become the best people they can be. To appreciate everything that they are able to do. To never take a second of life for granted. I have no tolerance for whining and complaining anymore. I know what it’s like to watch a little boy go through treatments for cancer and how you never once complained about anything. Except for missing your brothers and just wanting to be home. Complaining about things in our life now just won’t exist anymore, unless it has to do with missing you. That’s the only thing any of us should every complain about. Anything else can be fixed, problem solved, or worked through.

After the boys’ surf lesson, we hit up the hot tub and than came up for lunch. Liam crashed out for a nap, Quinn rested as well and I took my surfboard and headed out for a couple of hours. It was cold, but I welcomed the angry ocean with open arms today. It felt good to be out there and I got tossed around a bit. Coronado is a great place to learn how to surf and the quiet time out in the ocean, when I paddled past the waves to think about you, was nice. After I surfed, I came back up to the condo and hung out with your daddy and brothers. Later in the evening, we went out to our usual spot so your daddy could cook up our dinner. There were a bunch of dolphins out in the water this evening. We spotted about 5 or 6. They were so beautiful and I of  course thought of you. I was than overcome with anger and thought to myself that it was bullshit that a sign from you, had to come in the form of a dolphin. I don’t want any signs…. I just want you. Back with us, the way things should be. I tried to be happy about seeing those dolphins tonight, but it only made me sad and miss you more. You did leave me a lot of signs today, which I am thankful for. I don’t mean to sound ungrateful, Ro. I love all your little signs, but it doesn’t make me miss you any less. Sometimes it hurts more.

After dinner, we came back up to the condo and although it was late…. 9:30, I headed out for my run. (sorry Mr. Sparky Eyes) I promised him I wouldn’t run late at night anymore, due to an encounter I had with some creepy man a few nights ago; but I had to go tonight. It’s the restlessness in me that never goes away. I ran 7 miles…. all the way over to the Coronado Bridge and back. It felt good, it hurt, and I of course thought about you a lot. Sometimes, when I am thinking about you, it hurts so bad that I cannot even cry. I was thinking about being at The Ryan House with you and I felt like I was going to stop breathing as I still can’t come to the realization that you are gone. I think I have Post-traumatic stress disorder. For real.

Post-traumatic stress disorder

Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.

Causes, incidence, and risk factors

Post-traumatic stress disorder (PTSD) may occur soon after a major trauma, or it can be delayed for more than 6 months after the event. When it occurs soon after the trauma, it usually gets better after 3 months. However, some people have a longer-term form of PTSD, which can last for many years.

PTSD can occur at any age and can follow a natural disaster such as a flood or fire, or events such as war, a prison stay, assault, domestic abuse, or rape. The terrorist attacks of September 11, 2001, in the United States may have caused PTSD in some people who were involved, in people who saw the disaster, and in people who lost relatives and friends. These kinds of events can produce stress in anyone, but not everyone develops PTSD.

The cause of PTSD is unknown, but psychological, genetic, physical, and social factors are involved. PTSD changes the body’s response to stress. It affects the stress hormones and chemicals that carry information between the nerves (neurotransmitters). Having been exposed to trauma in the past may increase the risk of PTSD.

Having good social support helps to protect against PTSD. In studies of Vietnam veterans, those with strong support systems were less likely to get PTSD than those without social support.

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms

People with PTSD re-experience the event again and again in at least one of several ways. They may have frightening dreams and memories of the event, feel as though they are going through the experience again (flashbacks), or become upset during anniversaries of the event.

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical ofanxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • PalenessYup. That pretty much sums me up. Except for the paleness, but that is only due to the sunny Cali weather:)

I thought about the lecture I was going to get from Mr. Sparkly Eyes about running so late at night and thought about how I would tell him that I was sorry; but fear is a word that doesn’t exist in my vocabulary anymore. I have already lived through the thing I was most scared of in my life. So now what? What else do I have to fear? Nothing. Of course, I worry about your brothers and Daddy, but when it comes to me… I just don’t give a fuck. I’m not going to live my life being scared of anything anymore because I know whatever else is thrown my way, will be nothing compared to losing you. So , I will run my runs when I want, say the things I feel, swim in the ocean at night, and not be scared. It’s actually very freeing and liberating. To live a life of not being scared of things is how all people should live, otherwise what’s the point? Before all of this, I don’t know if I would have ever taken up surfing, because I was scared of sharks. And forget about running the dark. I used to make up things in my head to be scared of. Well, I’m done with that. At 33 years old, after losing you, I’m done with fear. I’m going to live my life the way you would have lived yours. Head on, embracing every adventure and pushing the limits for the most beautiful outcomes. I will live my life this way for you, because I know as an adult, this is the way you would have grown up to be. Life would have been scared of you.

I came home to your daddy and brothers watching a movie and soon Quinn was ready for bed. We came into our room and as soon as we turned on the T.V. guess what was on, Ro. “Zombieland.” One of our very favorite movies that we used to watch all the time. That’s where you got the saying, “Just you and me,” from. Another one of your little signs. That was one of our favorite things to do in the hospital was watch that movie on your iPad. Quinn watched it for the first time tonight and laughed a lot. It’s a little mature for him, but he has had so much of his innocence taken away that I let him watch it anyway. We cuddled up and watched it together. I held him extra tight for you.

We say goodnight to you every night. Do you hear us?? I hope you do. I’m going to say goodnight now baby. We have an early camp tomorrow again, hoping those brothers will pick up a little more passion and zest for the opportunities that they are given. I just want them to be thankful for being on this earth everyday, with 2 parents who are so broken, but are somehow managing to make this summer as good as it can possibly be. It’s a lot of work, but as a family, we have to do this. For all of us. I know it is what you would want.

I love you little man. I love you to the moon and back. As I was running tonight, I stopped and blew a kiss up to the moon and said, “I love you, Ronan.” I hope you heard me. Life is so precious and I know it doesn’t’ seem like it now, but I am not going to let it swallow me whole. I promise I will start living it again when I am ready. But ready is not now, and I don’t know when it will ever be. I need more time to pass between your death. I still cry all the time, but mostly over being with you that final night and saying goodbye to you. I still tell myself it just can’t be true. You were true and all I wanted was you. Forever. What am I supposed to do without you my little bug?? As of now, I don’t want to do anything except survive and not totally fuck up your brothers with the crazy shit that goes though my head. All I can do is be present for them and do the little things for them that I know mean so much. I will deal with them first, and myself later. I can wait. The damage done to them cannot be undone, which is why when we get back to AZ, therapy will become a big part of our lives. I have to be proactive about this and it is something we are going to have to do as a family, together.

I also forgot to tell you a funny story from last night. I took Quinn to dinner, on a date. We had finished up and we were walking out of the restaurant and there was a family of 5 sitting on the bench and standing up, smoking. I was holding on to Quinn’s had and I looked at them, straight in the eyes, and said, “Smoking causes cancer,” and kept walking. I thought Quinn was going to fall over. It’s like I have no censor anymore and he wanted to know if we were going to get into trouble for saying that. I said for what, “For speaking the truth? Ronan got cancer because he didn’t have a choice.” The fact that people in this day and age, take it upon themselves to smoke, knowing what the risks are, pisses me off. I’m sensitive to this, especially now. I wanted to say, “You should get cancer, not my 4-year-old child who didn’t do a thing wrong in this world.” You make the choice to suck on those freaking cancer sticks, then suffer the consequences. My child had to suffer for not a god damn reason at all except for bad luck. If anyone deserved to live, it was you baby. I will never stop thinking that. This whole things turned out so unbelievably wrong. For everyone involved. Everyone misses you Ronan. Even though you are gone, you are still changing lives. I promise you, a cure for this will be found before I die. I know I made you a lot of promises, but I promise to keep this one. I owe it to you and all the other little babies out there. Give me some time. Some time to mourn you, but when I feel ready….watch out cancer world. You’ve fucked with the wrong mommy and baby team. You are going to be sorry, but it will never be sorry enough for having to lose you over Ro. I will be sorry about that everyday for the rest of my life. Your fire now burns in my soul, you live with me, in my body. I know you may go away now and again, but when you want to come home, I know this is where your soul rests. I feel you all the time.

This is all for tonight my little monkey man. I love you to the moon and back a million times over. Just you and me, baby:) Sweet dreams. Go and visit some of your favorite people. Nighty Night baby boy.

xoxo

“Take away a man’s son. You’ve truly given him nothing left to lose.” Quote from Zombieland

My little reading crasher

I awoke this morning from an email from my friend, Diane, who lost her little boy, Jack, to Neuroblastoma, a few years ago. She and her husband, Ed, held our hands through this entire process and are still continuing to do so. Something that I know cannot be easy for them. The four of us unfortunately, share a very special bond, but there is no one I would rather share it with then two of them as they are an amazing family. Diane’s email was from late last night, and she was wanting to know if I was up. I didn’t see it until this morning but as soon as I read it, I called her right away. Every year, Di visits a “Medium,” and she started doing this a year after Jack passed away. I totally am into this sort of thing and I know when the time is right, I absolutely plan on finding the right person to go to. Di went a couple of weeks ago, after Ronan had passed away and she told me that Ronan totally crashed her reading. Her medium went on and on about this little boy who is now with her son, Jack, and has a large crowd of peeps surrounding him. She also told Di that Ronan knows I write to him and it makes him happy and he knows it is helping me process things. While I was listening to Diane tell me these things, I was sobbing hysterically. There is not much I believe in anymore at this point in my life, but I totally believe that Ronan can hear me still. Maybe that is why I cannot seem to stop writing to him, because this entire time, although I didn’t even think of it this way, he can hear me and knows what I am writing to him. I don’t know where my writing comes from. It is something that just pours out of me at night from my heart and soul. It is something I cannot seem to stop doing and maybe this is my way of really communicating with Ronan. It is our way of staying connected. Whenever I sit and write, I feel so connected to him. I sometimes feel like he is the one putting all the thoughts in my head. He is the one who gives me the strength to continue doing so. This is one of his many gifts to me. All I know is I can’t seem to stop and I don’t want to. It is cathartic to me and Ronan knows this, so he continues to inspire me and push me. As long as I feel like I have things to say, I will continue on. What I write may not always be easy to read, and I so appreciate all of you for staying with me and not judging me. What I speak is the truth, raw, and real. It is the way Ronan would want me to continue on with his story. He never held back a thing; something I would like to think he got from me. He wouldn’t have my writing any other way. So Ronan, my very special soul. Thank you. Thank you for crashing Di’s reading and letting her know you are o.k. I know you are because of all the love that still surrounds you. I know I will see you again someday, little man. But now, I have to work my ass off on what we set out to do from day one of your diagnoses, which is raise awareness. I will not stop until things in pediatric cancer have drastically changed. I will fight harder for you than ever because I have to make you proud and I promised you we would tackle this together until people listened. Even though you are gone, I know you will be working just as hard with me right by my side. Together, we can do anything.

So, Ro. After I got off the phone with Di, I woke up your Daddy and Quinny so we could get going on our day. I got Quinn all ready for Legoland and Mimi, Papa, and Liam came to pick him up and off they went for their little adventure of the day. They had a great time. Your daddy and I got ready to head out to meet Denise from your favorite clothing line, Fore, Axel&Hudson. We decided to meet her in Laguna and I was so quiet on the car ride there. I was feeling such a mixture of emotions. I was anxious, excited, happy, but also really, really, sad. I have talked with Denise for months now and one of the thing I always said to her was how I couldn’t wait for the day to come when she could meet you and see in person and see how adorable you looked in her clothes and hats. Nobody could pull off a Fedora like you, Ro. Having to meet her today, was devastating to me without you. On our drive there, as we had just gotten to Laguna and we were driving in town, the tears were streaming down my face. I was begging you to give me a sign that you were with me. I was staring out the window and on my right was a store called, Esther. I almost couldn’t believe my eyes. I mean, how often do you hear that name and just when I was wanting a sign, there it was. 2 minutes later, I looked to the left and there was a store called To the moon. I couldn’t ask for a bigger sign than that Ronan. You and Esther together in Laguna. How random is that? It was almost so amazing that for a slit second I thought I made it up in my head. But I didn’t. I can’t wait to tell Doriet about this. I know this will make her as happy as it did me. I know the two of you are together.

When we got to Denise’s brothers place today, and I finally got to wrap my arms around her, everything just felt right. You would have loved her. She is one of the most real, pure, kind-hearted people I have ever met in my life. Everything she has done for you has been out of love for a little boy that she didn’t even know, but you captured her heart. Your daddy and I told her how happy all the clothes and hats she would send, made you. You were always so proud to wear them as you should have been because they are the so special and unique, just like you. We had a beautiful lunch and Denise wanted to know a bit about what we wanted to do with your foundation. We explained to her that research was our number one goal. I told her how I cannot get Gisele Sholler out of my head, even though I have never even met the woman, but she was the one who was going to help us in the end. I really want to meet her and I am really interested in the cutting edge things she is coming up with for Neuroblastoma. I also talked about Dr. Mosse at Chop. I believe in her and what she is doing as well. I believe in Dr. Kushner too, but my personal feelings are getting in the way of wanting to help him, although I know I should put these aside because he is a brilliant man. Like I said, when the time is right, we will know. I know you will help us make this decision. Funding research is our number one goal, but raising awareness is where my heart is truly at. Something has to be done to make people open their eyes. Baby steps, Ro. But we will get there, I promise my love. After talking to Denise about what we are considering, she had a proposal for us. She said she has talked with the two other owners of her company and they really want to get involved and make a difference. They have decided that they want to design a line of hats in your name and they want me to be involved in the design process. With a part of the proceeds going to your foundation. She had both your daddy and I all choked up at lunch over this. What an amazing thing to be a part of. We are so honored. The fact that one simple message from me, and this company jumped on the chance to help out by making you so happy with all the fancy clothes you used to love so much to wear, and they wanted nothing in return but your smiles. As of now, Neiman Marcus carries their line and The Garage in Scottsdale. They say certain people are put in your life for a reason, and it is clear that Denise is going to be a big part of our lives. I feel like I’ve known her forever and the connection that you have given us is such a blessing Ronan. We felt you all around us today as it was the most gorgeous day outside. I know it was you, smiling down at us. I know you were with us all day long. After a wonderful afternoon, it was time to get your daddy to the airport. He headed back to Phoenix today and it was hard to see him go especially after how emotional we both were today. I hate the fact that he is at our home, without us. But I know he is there with you and your ashes, so that makes me feel better. I hope they bring him comfort like they do me. I know you will take good care of him tonight and play with him in your dreams like you have been doing.

I came back to our condo and put on my running clothes for my nightly run. It was much needed after today. I only put in 4 miles again, and they were fast and easy. My running seems to come easily to me now because all I do is think of you. Time passes quickly that way. I didn’t do my nightly swim as I was wanting to get back to pick up your brothers from Mimi and Papa’s. They are both sound asleep, tired from their long day out. We all take turns sleeping with your blanket and Liam has it tonight. We treasure it so much.

Time to try to get some sleep, Ambian induced of course. I am convinced this is why I am not dreaming of you…. because it puts me into such a deep sleep. I am too scared to try to sleep without it now. Someday, but as of now, I’m not ready. I will know when I am ready to try to sleep like I used to. If I don’t take it, I stay awake all night and just sob about you. It’s too painful and I need the sleep to get me though the days. It takes a lot of energy to try to hold it together and being sleep deprived is something I don’t think I can mix into this madness now. I know you know this, but I miss you so much. I think about you every second of the day. You will always be a part of our family and we will never forget how you lived your life with such pride and dignity and you were never scared. Everyone could learn so much from you. You never felt sorry for yourself and you never stopped fighting; until I told you to. Thank you for listening to me for the first time in your life. As much as I wanted you to fight forever, I had to let you go to be free of your pain. Whispering those words to you was the hardest thing I’ve had to do in my life. But you loved me that much that you honored what I said to you. I am so thankful for that. I had to let you go and live your new life, the life you deserved to live here with us. I know you are free now and as sad as I am, I am happy for you. So go and play, baby. Go and cause all the trouble in the world and know that I will always be right by your side, loving you every second of my life. I will see you again, I promise you. I dream of that day, Ronan. I have a lot of work to do first and it starts with your daddy and brothers. I have to make sure they are going to be o.k. I worry for all of them and we have so much healing to do. Everyday that I see your brothers smile, it gives me hope. I am so lucky to have them and so were you. We all know this and treasure our time with you so much.

G’night my little man. Go spread your love around tonight and visit everyone who loves you so much. Twinkle Twinkle my baby star. I love you to the moon and back.

xoxo

Salt on an open wound

 

 

Ronan. Life goes on. One thing I am learning, is no matter what happens in life, it goes on. I hate this. I want everything and everyone around me to just stop. It’s apparent that this is not going to happen. I had no choice but to wake up today. It happens to me every morning, over and over again. Like groundhogs day. I woke up to the sunny sky and the ocean breeze. I told your daddy that we should go to The Hash House for breakfast. Do you remember when we went there a couple of summers ago? I think you had just turned 2. You were at that age where you would never sit still, but I somehow managed to keep you entertained as we enjoyed our breakfast. My friend, Kelly, took us with her husband and little girl, Gracie. Seems so long ago, Ro. But it wasn’t. I sat on a bench this morning, while we waited for a table. There was a mom sitting right next to me with her baby girl who was just 6 weeks old. I didn’t even know what to feel. Normally, I would have been all over this mom and sweet, new baby girl. Instead, I sat there quietly and tried to ignore her. Today, I felt a mix of jealousy, sadness, and emptiness. I thought about you when you were that little and what a gorgeous baby boy you were. I wished I could turn back time to have you all over again, as a baby, even if it still meant you ended up dying of cancer. I would do everything we just went though with you, all over again in a heartbeat. I don’t care how hard it was; at least you were still here. At least I still got to look into your big blue eyes and hear your little voice. I can never have those moments back now because some asshole named cancer has stolen them from me. I still can’t believe you are gone. I still cannot believe things like this happen in this day in age, especially to kids. Especially to you.

After the Hash House, we ran some errands. We then came back here and had a kind of lazy day. I took a nap with Quinn and your Daddy worked while Liam played on the iPad. It was a quiet day. The days I hate the most. We went over to Mimi and Papa’s condo for dinner. Liam is sleeping over there and Quinn is here with us. I can tell he is missing you so much. We watched some videos of you on my computer tonight from when you were about a year old. You made Quinn laugh like no other. He laughed so hard tonight as you  were up to your usual mischief and Quinn was your favorite target. He loved all the trouble you used to cause so much. I never thought I would complain about having boys that are so well behaved, but I am going to tonight. I miss your trouble making ways and the way you and Quinn would cause it together. Now, Quinny has nobody to cause mischief with as you know Liam is such a little rule follower and gentle soul. I cannot describe to you the absence you have left in all of our hearts Ronan. It’s like a whole new life. I life none of us ever dreamed of or wanted. A whole new, unwelcomed life where we have to struggle everyday to fill our days with something to make us smile. Today, we smiled over talking about you. Today, we cried about missing you too though. Those things seem to go hand and hand.

Tomorrow. Tomorrow, I actually have something to look forward to. Mimi and Papa are taking Liam and Quinn to Legoland which they are so excited about. Your daddy and I are going to drive to Laguna to meet up with Denise from Fore, Axel & Hudson. She is part of the amazing company who sent you all of your adorable hats and clothes. I have wanted to meet her for so long and we have been trying to coordinate meeting up. I can’t wait to give her the biggest hug for you. I need you to be with me tomorrow, baby. I cannot do this without you. As much as I am so excited to meet her and to tell her thank you in person, it is going to be hard not having you with me. I used to dream of the day that we could both meet her together, after we had gotten you all better. Your daddy is going with me so I will have him there to hold my hand. We will watch for your little signs all day tomorrow to know that you are with us. It will be the first time in a long time that your daddy and I have spent alone; just the two of us. I hope I’m not a wreck; it is hard for it to be just the two of us. Hard for me because I know your daddy is hurting just as badly as I am so it is like looking at myself, in a mirror, with my heart ripped out of my chest. The two of us together, alone, Ronan. It is just plain sad. The times that it is just the two of us, we basically just sit around, stare at each other and cry. I look in his eyes, and I see your eyes. Someday, I hope this will make me happy. But as of now, it’s like pouring salt on an open wound. Too much pain, everywhere.

I ended tonight by turning on the T.V. which I rarely to anymore. A movie, that I used to love, “Life as a House,” was on. Oye Vey. Bad idea to watch that movie. So good, but so sad. And of course it has to do with cancer. It was like a bad car accident though. I couldn’t stop watching or turn it off. I ended up bawling my eyes out. Cancer is just awful all around which is why things have to change. We are on to something though. That event for you, The Brightest Star in the Sky, that was put together in just a few weeks, raised 50k for you foundation, Ronan. 50K! I can you believe that?!?!?! I am still in shock and I am already hoping to turn this into an annual event. Think of all the awareness we are going to raise! My friend, Carolyn, said it was because of my words and your eyes that the event was such a success. I think she’s on to something. I’ve got a message to get out there and your beauty is going to help me do it. I was talking to Mr. Sparkly eyes today and you know how he is with his words. They always hit me hard. Today, he called me powerful. I laughed out loud at that, because I have never thought of myself this way. But after thinking about it, I feel like being powerful is something that I know I can be because I do have the passion and you on my side. I will use my power to make people aware of Neuroblastoma. Something most people have never even heard of. I am going to use my “power” in such a positive way and make such an impact. I have no choice. You will forever be my inspiration, my hero, my role model in life. You have changed me forever. Thank you, little man.

I’m going to snuggle up to your brother and your blanket, GiGi. Miss you so much, Ro. Sweet dreams. Come and cuddle with me tonight. I love you.

xoxo

Twinkle Twinkle little star

I had the worst dream last night. It was all about scan day. We woke up and got ready to go. Fernanda was downstairs waiting for us, with coffees in hand and off we went. We arrived promptly, like always, and soon Ronan was called back to anesthesia; I held him tightly as they injected him with his Propofol, and kissed him as he went to sleep. I left him on the table and covered him up with his blanket, Gigi. Out in the waiting room I went and fell into Fernanda’s arms. Leaving Ro for anesthesia is never easy on me, especially without Dr. Maze there to be the one to take care of my little guy. Fernanda and I gathered up our things and pushed Ronan’s stroller up to floor 9 to let the waiting begin. And wait we did. For fucking ever. I think we sat for a good 2 hours. Fernanda tried her best to distract me with her her stories; but there was nothing that could take my mind off of the things to come. Soon, I saw Dr. Kusher, the man I had been waiting for. He was back doing Ronan’s bone marrow aspirations. He breezed right past me without making eye contact. This was my first clue. My stomach dropped to the floor. Fernanda goes, “There he is, let’s chase him down to see what the results said!” I just looked at her and told her no. He knew we were waiting and would get to us when he was ready. By this time, Ronan was waking up from the anesthesia. We went back to get him and my little groggy guy just wanted to be in my arms. I put on his pants and shoes and picked him up. We went back to the waiting room to wait once again, for Dr. Kushner. We sat and waited and fed Ronan some food as he was hungry. As I was getting up to do something, my Claude necklace, the one that I always have around my neck for important days; that has the tooth of St. Claude in it, fell to the ground. It had somehow come detached from the chain and I scrambled to pick it up. I picked it up and tried to figure out where it had come detached. So weird, I thought to myself, as the clasp was not broken. I did my best to ignore the St. Claude incident and told myself it was not a sign. I didn’t even tell Fernanda this which is not like me at all. I tell her everything. Soon, the kid at the front desk told us Dr. Kushner was ready for us. We were taken back to room 7 to meet with him. As soon as I saw him my stomach dropped to the floor. He couldn’t even look me in the eyes. I looked at him and said, “No no no no no no no.” His eyes were wet and he said in his weakest voice something like, “The cancer is spreading. The chemo did not work.” I clutched Ronan, sat down in a chair because I was going to pass out. I don’t remember much more. At some point, he recommended we call Woody on speaker phone. I sat there and listened as Dr. Kushner tried to explain things to Woody. I watched him as his eyes kept getting wet. At one point I asked him if he could please give me just an ounce of hope. Just one ounce… something. He looked at the floor. I went into shock and asked him if this ever gets any easier for him. I told him it couldn’t possibly ever get easier. He got up and turned his back to me. Where did the man go that said he would fight for my baby with everything he had? Because that man in front of me was nowhere to be found. I saw a coward. A man who had completely given up on my child. I somehow gathered my strength and got up. I gave him a hug and told him thank you. I told him he was a good man. I walked out of the doors to his office with Ronan running beside me. Dr. Kushner, the man I had put all of my faith into, had given up on my child and there was no looking back.

Fernanda and I walked back to the RMH. I remember nothing about getting back to our room. All I knew is I wanted to get home, back to Phoenix, asap. I curled up on my bed while Ronan ran around like mad and Fernanda buzzed in the background making travel arrangements and figuring out what to do next. I remember something being said about needing to get me Valium. I remember sitting on the floor playing with Ronan and drinking a coconut water. I remember taking the coconut water and throwing it as hard as I could across the room while I watched it hit the wall and liquid splashed everywhere. I told Ronan we were having a party and I wanted to see if my water would explode. He then took a can of root beer and poured it everywhere to make it explode like a volcano. I think Fernanda got in on the fun and dumped her Diet Coke all over the floor on a blanket on purpose. We sat and had a fucking pop throwing party because what else could we do? It made perfect sense at the time. She then spent the next 7 hours packing up our room, running all over the city to buy more suitcases for all of our shit, did laundry, cleaned our place, got me my Valium, composed an email to Dr. Mosse at CHOP regarding starting Ronan on MIBG therapy and we finally got Ronan into bed so he would settle down to sleep. Fernanda watched as I rubbed his back and he asked me to sing him “Twinkle Twinkle Little Star.” I sang to him our song as I do every night. We all fell asleep around 2 a.m. Our alarm woke us up at 3:30 a.m. as our car was picking us up at 4 a.m. to get us to the airport. 9 suitcases checked later and we were at our gate. The flight was blurry and Ronan slept much of the way. I did too due to the Valium and Ambien. I asked Fernanda for more Valium and she told me no. I cried on our flight and watched her cry by herself in the aisle across from me. She looked like an angel. I woke up at one point and looked down at Ronan and I saw his pinky intertwined with mine. That’s how I know this is all a nightmare and none of this is true. Because his little pinky of his refuses to let go of mine, even when we are both in a deep, deep sleep. As we were getting off of our flight I hugged Fernanda tight and told her that she was the best friend I have ever had and how nobody else would have done this for me. She told me there were a million people who would have done this for me and I then told her yes, but not the way that she did. She came in, in the middle of the biggest storm of my life and attacked it head on and beat the fuck out of it. I have no idea how in the world she did this and I kept offering to have Woody fly out to help us. She looked at me like I was crazy and yelled at me “For what?!?! We can do this! I’ve got it under control!” I’ve learned not to argue with a Mexican Goddess. You will never win.

I somehow made it home, back to the cleanest house possible and to my twins and in-laws. Before I knew it I was in my bed and passed out. I woke up to my husband and 3 boys playing away. The days are blurred and I’m not really sure what is going on. I went out this morning to meet up with my Mr. Sparkly Eyes. I told him how disappointed I was in Dr. Kushner and how I am learning to lower my expectations of people because I set the bar so high. He agreed with me and also tried help me understand that he is sure Dr. Kushner feels like he failed us and is heartbroken. I told him I understood that, but all I wanted was for him to have a bit of decency and compassion which I felt he completely lacked. I just want somebody to be mad at and I know that is not fair, but I have a right to be mad at the way things were handled. Dr. Kushner had his freaking assistant call Woody today to tell him he thinks we should go to CHOP for MIBG. He didn’t even call Woody himself. That is not only rude, but classless. And this is a man that I completely respected, but I have come to find out that when push comes to shove and times turn to the darkest hour, the people who you think will be there until the end for you, can turn on you in a heartbeat. I told Mr. Sparkly Eyes that we refuse to give up and as long as Ronan is still fighting, we will fight as well. He more than agreed and promised to never give up on Ronan, told me that he, himself, is not going anywhere and all I have to do is say the word and he will be at our home to sit with me or whatever I need. I told him how I didn’t know how I was going to write this post, as I have been trying for days but lacked the words. He told me to just be honest, like I always have been. So here I sit, writing the most honest words that I have ever had to write in my life.

I had my house full of my dear friends and family today helping to get everything unpacked. Stacy, Karen, Liz, Fernanda, Heidi, and Mrs. Martin all buzzed around doing everything they could. I don’t think I’ve done much of anything except Heidi got me out for a pedi/mani and I got to see Marisa who met me at my nail salon to hold me.

What’s next? First, I have to wake up from this nightmare because I refuse to believe it is real. Ronan is running around like mad, playing with his brothers and having lightsaber wars with his favorite cousin, Luke. Once I wake up, we plan on getting on a plane this Tuesday to take Ronan to Chop to start him on MIBG therapy. This is a fairly short therapy, but intense. We will get Ronan through this. As my friend, Ed said to me, “It takes one child to change the odds.” That is the best thing I’ve had said to me all week. Until we leave on Tuesday, I’m going to do my best to get thought these next days. I’m going to hug all of my boys extra tight and surround myself with all the love I can get. As much as I want crawl up in my bed and not come out, I have 3 boys, and a husband whom I love more than the stars combined to try to remain strong for. I still have hope, faith, and a belief that Ronan will be the miracle to come out of this.

I love you all. Thank you for your continued love, support and prayers. This is not even close to being over and we will never give up on our Ro.

xoxo

P.S. If any of you ever see that angel of mine, Fernanda Borletti on the streets, at the grocery store, at school, wherever….. please wrap your arms around her and whisper to her that she is an angel on this earth. She deserves a god damn Noble Peace Prize.

The path is not clear, as the road is long

I feel like I’ve run a marathon today because of everything I got accomplished with a lot of help from my friends. This morning started off busy and I woke up overwhelmed by everything. We still had not heard back from Dr. Kusher from Sloan Kettering to see if he was o.k. with Ronan starting 2 more rounds of chemo here and then having him rescanned. We were waiting to get the green light from him. I called Fernanda and she said she would be over after she dropped her little one’s off at school to help me tackle my “to do” list. As soon as she got over here we started to go over the things we needed to get done. Soon after, we got a phone call from Woody and I put him on speaker. His exact words were, “I need you and Fernanda to take Ronan to PCH now and demand that they start him on his chemo or else we’re taking him to New York tonight. We left the house as soon as possible and it looked like a bomb went off in it. Auntie Karen was sweet enough to come over and tidy things up for me because I was afraid we were going to have to stay the night at PCH tonight and did not want Woody to come home to a messy house. Thank you to the best fairy godmother in the world. Woody would have had my head if he had seen that mess!! Fernanda and I busted into PCH to explained our situation as best we could. I knew getting them to start the chemo today was probably not going to happen, but we insisted that they put the order in and start it tomorrow at the latest. I don’t think they were too happy with us but we don’t have a choice and waiting even a day to get things going is not o.k.  We finally got everyone on the same page and tomorrow Ronan will start his 7th cycle of chemo; one he has never had before. He will be starting Temozolomide and Adriamycin which are supposed to be tolerated fairly easily. We will do these two rounds of chemo and then take Ronan out to Sloan Kettering for his scans. We are basically buying ourselves more time to make a decision and exploring every possibility for our son. If these two rounds of chemo work, and Ronan has less disease, we are keeping the transplant door open. We are also going to squeeze in a consult in San Francisco, Philadelphia, and New York. We have no choice but to explore everything that is out there.

Ronan’s chemo will be done at the clinic tomorrow and Friday so we don’t have to stay the night at the hospital. We will check in to PCH for the rest of his chemo Saturday-Monday. I feel very comfortable with the plan as of now. I have a great feeling that these two more rounds of chemo are going to give us the results we want to see and will lead us to the direction we need to go. I am so thankful for the beautiful soul of Doctor Adams yesterday in suggesting this. For the time being, we are back on track with a plan. This gives me peace <3

After we got home from the clinic, Ronan and I took a little nap together. It was so sweet. There is nothing more precious than having Ronan say to me, “I’m going to cuddle you mom.” And then nuzzle his little head into my arm. I wasn’t really tired but he was so cozy and peaceful that I fell asleep with him anyway. My friend Gay came over and helped play with Ronan so I could get some things done. She also got me a phone call with a woman named Karen Kudro. Her daughter, Hailey, was diagnosed with Neuroblastoma at age 5. They did a lot of her treatments at CHOP in Philly and Hailey is a healthy and beautiful survivor. I was so grateful that her mom took the time to talk with me today, even though they are in Disneyworld for Hailey’s Make A Wish trip!! She didn’t have to take the time to call Gay back at all, but did and she gave me a lot of insight that was very helpful. People out in this world are so amazing. I am blown away everyday by the kindness of strangers. Having this happen to Ronan has made me realize that I need to work so hard to be the best version of myself that I can possibly be; even though there are many days that I just want to give up, I just can’t and won’t. I find myself doing things I wouldn’t have normally done in my so called busy life before all of this. There is a lot less unnecessary anger in my life and I have such a high tolerance for not letting the little things get to me anymore. It is much easier to find the beauty in each and everyday than it used to be. The most beautiful things are the simplest.

After Gay left, Stacy called to asked if I needed her to come over to help me get ready for tomorrow. Nevermind that she had just worked a full day and had her gorgeous babies and husband waiting at home for her. I couldn’t pass up the chance to utilize her help. My pile of papers, bills, receipts, has been eating away at me and I told her Woody was about to divorce me over it. She showed up and we tore through everything and got a ton of my to do list done. Talk about an amazing feeling!! I could not have done it without her. Seriously Stacy, you may have saved my marriage tonight;) And my sanity. I can go to PCH tomorrow with a clear head knowing that most of what I need to get done, is done. Thank you my dear friend. I am the luckiest girl alive to be surrounded by these amazing women. Thank you all for taking such great care of us and helping in any way you can even if it’s little things like dropping off a coffee (Heidi) or calling to check if I need anything from the grocery store (Melissa:) Ed- (So excited about the Zico Coconut Water that arrived today!)  I have the best group of girlfriends one could ask for and every second of the day I am so thankful.

I am ready for what the world has to throw at me tomorrow and can go into my day with a clear head. One day at a time, baby steps. Today, I sent my Mr. Sparkly Eyes a text and it said… “Ronan is going to get through this, I just know it. He is so strong.” His response was, ” You and Ro are BOTH going to get through this.” He knows it, he feels it, he believes it. I like to call him my very own Master Yoda and the fact that he believes this is true, tells me my feelings are 100% right. Everybody I know feels this way and that says so much. It’s just like Woody said to me today which made me laugh out loud. He said, “Ronan is a superfucker. It would only make sense that his cancer is too.” He means it in the sweetest way possible… that Ronan is so strong, that of course his cancer is as well. It would only make sense that this is the road we have to take; Ronan wouldn’t have it another way.

Goodnight sweet angels out there. Goodnight Moon. Goodnight Ro Baby, Liam, Quinny Q, and Daddy Woo. Goodnight New York Miss Macy. See you in my dreams. Sweetest dreams to all of you.

xoxo

Why hello beautiful boy

Today was actually a wonderful day. Wonderful as in we only had to go to the clinic for the standard blood tests and to have Ronan’s broviac dressing changed. We got to see our favorite nurse, Sharon, which is always a treat. Ronan told me today that she is his favorite person to see at the clinic. So sweet he is. This morning he woke me up at 7 a.m. on the dot demanding scrambled eggs, pronto! I tried my best to put him off as I was so cozy in bed but he wasn’t having it. I got up, made him his eggs, and got Quinn ready for school. Liam is still at Mimi and Papa’s due to not feeling well. After Quinny got off to school, I spent the rest of the morning cooking for Ronan and making him food about every half an hour. He is constantly hungry which is a very good thing, but leaves me exhausted and I don’t get much else done around the house. We headed out to PCH and had a chance to talk to Dr. Eshun about Ronan’s scans. He overall seemed pleased with everything but does not want to give us any concrete statistics until we get the MIBG scan done. This will be the most telling of all of the scans. Thursday cannot get here soon enough. After the clinic visit, Ronan was begging me to take him to Chelsea’s Kitchen for lunch. We met Woody there and watched as Ronan chowed down some of Woody’s French Dip, french fries, and his Grilled Cheese Sandwich. I had my favorite, the Ahi Tuna Tacos. Most amazing things ever. I could never get tired of that place. Ronan was happy to be out with his mom and dad and it was a gorgeous day spent with a gorgeous boy who is feeling wonderful. You have no idea what it does to my heart to see him so happy and carefree. Forget the fact that his life has been overtaken by cancer; today none of that mattered. Quinn came home from school and cousin Luke came over for a couple hours to play. The boys played baseball outside and ran around like crazy. I felt like a normal mom for a minute… making them after school snacks, helping with homework, doing laundry, and getting to hear all about Quinn and Luke’s day at school. It’s days like today that the cancer cloud that hangs over my head disappears for just a short amount of time. It is the most wonderful feeling in the world. I made the boys’ dinner and as soon as Woody got home, I headed out to my gym to get in a quick workout. I’d better try to get in as much exercise as possible before transplant starts because I know once that starts, all of my workouts are going to be gone for awhile. Not looking forward to that but I will just have to suck it up and keep telling myself that this isn’t forever. Soon we will have Ronan back and our lives will return to being somewhat the same; but with much more appreciation for anything and everything that comes our way. After going through something like this, the little things are going to seem so less in our life and we have learned what truly matters. I am grateful in a way for this lesson and I have all the faith in the world that Ronan was put here on this earth to teach us these things and to help us change the world. He has such a special journey planned for all of us and we are going to follow his lead. I have learned to just go with my gut feeling with most everything in my life and it always turns out right. I will follow Ronan to the end of the earth and back and feel so lucky to do so. He is the most amazing little boy. Never in my life have I known someone so strong, brave and beautiful and he is all of this at only the age of 3. Just imagine what he is going to be like as an adult. I cannot wait to see what life has in store for him.

I have learned that my days now are filled with both sadness and beauty. I am o.k. with that because I try so hard to make sure the beauty outweighs the sadness. Maybe Ronan was born such a beautiful boy for this purpose… because this has always been what his journey in life was meant to be and being so beautiful, would help me get through this?? Never has a more beautiful boy existed and I am not just saying this because I am his mother. I am not biased, this is the truth and I now know it was for a very special reason. All I have to do when I am feeling too sad or scared is look into his big blue eyes and my fears melt away. The look in his eyes tells me over and over that he is going to be fine. I truly believe that with every part of my mind, body, and soul. Everyday, I am finding things I am thankful for and it reminds me how precious life on this earth is. Ronan is a gift and I am so happy I get to share him all with you.

That is all for tonight. I am going to hot yoga with Stacy at 5:30 a.m. in the morning. Told you I’m taking full advantage of my freedom and what better way to start my morning than drenched in sweat and tears. Love you all my dear friends. Sweet dreams of peace and happiness.

xoxo

Love my name
Love left dry
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Soon comes rain
Dry your eyes
Frost or flame
Skeleton me
Fall asleep
Spin the sky
Skeleton me
Love, don’t cry
Love, don’t cry
Love, don’t cry
Skeleton me
Skeleton me

Skeleton me