Diamonds Are Not a Girl’s Best Friend

Ronan. Does it sometimes feel like I want to rain on everybody’s happy parade? Because I don’t. I am happy there are happy people out there. I am happy that most people out there do not know what it feels like to lose a child….. well, I may be taking the happy word a little too far, because you know I don’t know what happy feels like anymore. So let’s tell it like it is…. happy is not the right word. I am glad. Glad that most people won’t know this pain. But I really hope from reading this story, they get how lucky they are and they choose to live life a little differently. Just by knowing how it really is the small things in life, that matter the most. The sweet whispers of a child, the helping of a stranger, the butterfly kisses of the world, a child’s hand, laughter, a solid marriage, strong friendships, true friendships, loving yourself, soul mates, being kind to others, sparky eyes, and helping when you are in a position to do so. These are the things that matter in life. Nothing else.

I have some bereaved mommy confessions to make. I have a lot of them, but in order to confess them all, I would need to write a book. And maybe a good attorney to keep me out of jail. Let’s just start with a couple tonight. The one that makes me feel like such a jerk. Let’s call this one, “Confessions of a bereaved mommy who now hates to wear jewelry.” This didn’t happen until after I lost you. Until I started wearing your ashes around my neck. Until one day, I looked down at my diamond ring and got really mad. It made no sense. I did everything right. I married the right man. We loved each other. We had formed a house full of respect, love, compassion, strength and honesty. But now our baby boy, was dead. But I had the pretty jewelry. The jewelry was there, but you were not. I didn’t want the jewelry. I only wanted you. I slowly started to put all of my pretties away. Christmas and my birthday came and went. Guess what was given to me? A new pretty ring and matching earrings. Tears were cried over the gifts that I did not want. Your daddy only wanted to make me smile. But I cried instead. Take it away. I don’t want it. It’s too pretty for me to wear. And I am so ugly. Can’t you see how ugly and sad I am?? I don’t deserve to wear this pretty jewelry. I have Ronan, around my neck… I don’t need anything else. None of this stuff really matters and because life is not fair, the jewelry gets to stay and Ronan gets to die? I want the jewelry to die, instead. Your daddy insisted I keep it all. I did. I tried. I’ve worn the pretty ring and earrings once and it didn’t make me happy; it just makes me sad to look at. I put it away with the rest of my things. It came up tonight, again. I begged your daddy to take it all back. “I won’t wear it!” I told that daddy of yours. “But you are so thoughtful. Thank you. It really is the thought that counts, Daddy Woo….. but the only thing I need to wear…..is Ronan.” I’ll mix it up a bit, Ro. I’ll wear some inexpensive skull bracelets around my arms, your bracelets, or some cheap Forever 21 jewelry that is bright, but diamonds, gems, stones….. I can’t do it. I used to think diamonds were a girls best friend. I thought that, until I had my best friend taken away from me. A diamond cannot replace you. A diamond cannot bring you back. A diamond cannot make me smile. A diamond only makes me sad. I fight with this a lot. Because I know anything and everything your daddy does, comes from such a good place. So why can’t I just suck it up, smile, and wear the pretty things? I mean, really…. it could be so easy to do. If I were a fake. But that’s just one thing I’m not. I cannot suck it up and fake it with the stupid jewelry. This makes me feel like a big, fat jerk but I cannot look away from the lesson I’ve learned from all of this. Pretty jewelry, and I don’t care how much you have….. will never truly make a person happy. When everything else is stripped away, when the most important thing you’ve ever had in your life, is taken away and all you are left with is pretty jewelry….it will not mend a broken heart. It really just DOES NOT matter. It is not what is really important in life. It won’t stop the tears, sadness, emptiness, or loneliness one feels. It won’t bring back my smile or you. It is only a reflection of broken promises, hopes and dreams. It’s a facade. It is overcompensation for what was supposed to be, but never will be again.

I tried today. So freaking hard to have the HAPPIEST ROENTINE’S DAY EVER! I had some productive things to take care of. I had a meeting. I put on my game face. I did a lot of nice things, for others. I brought cupcakes to your Sharon at PCH. I had coffee with your other lovie and gave him our card. The smile it brought to his face, made my entire day. But his smile did not come with false words like most peoples do. His smile came with watery eyes and words like, “I know you are in excruciating pain…..” I know he knows, which makes my pain worse. I don’t like that other people hurt because of this. I never wanted to hurt anyone, Ro. Especially the one’s we love the most. It makes me sad.

Our new friend, Margarita, dropped off dinner because I have seem to have lost my cooking skills/desire. (Total inside joke for my Saline Bean…. (“I seemed to have lost my keeeeysssss”) I sat at our table, in your spot and opened the cards from your Daddy, then Quinn, then Liam, and finally, you. Your card sang. I could hardly listen to it because the tears just started pouring. I smiled through my tears, kissed your daddy and brothers and told them thank you.

I drew a hot bath. Your brother, Quinn is still sick and Ronan…. confession number 2 of the night…. I cannot take care of him. It’s all I’ve been doing since Saturday and I am about to crack. I think I’ve become a bad mom. I would have never had these feelings before losing you. I feel like a big weight is on my chest. I feel like I can’t breathe. I feel like I don’t want to be a wife or a mom anymore. Do normal people feel this way? Or is it just me? Have I gone mad? I think so. I must be mad. Insane. And sad. So very sad.

I tried to make it a very special day, Ro….. but all I did was think about you and Ben. Ben with the Bald Head. Ben who likes to eat sushi and listen to The Beatles. Ben who has a very sad mommy for the worst reason possible. I’ll attach Ben’s caring bridge tonight because I need everyone to send them their extra thoughts, love, prayers and whatever else you might do. I’m only sending them you, Ro. Only you.

http://www.caringbridge.org/visit/benpurcell/journal

Please think about Ro and Ben all you people out there, reading this. Please don’t just make this your bedtime story while you sit reading it, dripping in your diamonds or ice cream. Please do something to help us change this… for your kids, your grandkids, your neighbors, your friends, for anyone you love. Please help us change this, because as of now…. our pain is not yours. But bubbles can burst at anytime. Never trust a bubble.

Ro baby. It’s Ambien coma out tonight. I have not taken anything in a week. I have been sleeping like a baby, in your bed, without Ambien. I’ve been sleeping in my dead babies bed. I can’t believe this is true, but it is. Today was too much. Tonight is too much. I need a break. I just need a break from all the screaming, crying, laughing, T.V., conversations, vivid dreams of everyone but you. Where are you? Why won’t you visit me, in my dreams? I miss you so much. I’m so sorry, Ronan. I hope you are safe. I love you, baby doll.

xoxo

Life Before Asshole Cancer and Gina

Before all of this, I had a really good head on my shoulders. I lived a really happy, simple life. My life consisted of a handful of really close friends. Sisters that I had chosen to be in my life after waiting a really long time for them. Time spent with them would be dinner once a month, enjoying each other while having play dates with our kids, meeting up to go running or hiking. Simple things. My life with my husband was really easy. It was full of security, love, trust, and we took time to make sure we were keeping our marriage a priority. We did weekly date nights, to dinner or a movie. Occasionally, we would have the boys sleep over at my in-laws so we could have time just the two of us. We took a trip, once a year, just the two of us. But our WORLD was our 3 little boys. Woody worked really hard to be the best attorney, husband, and father. My friends and mom were always telling me they wished they could clone him. I knew how lucky I was. I know how lucky I am. I worked really hard at being a good mom. My days were spent tending to everything my boys could need, while teaching them our values, morals, and what it meant to be a good person.

I lived in a bubble. But a good bubble. A bubble full of being a good mama, wife, friend, and person. It’s just the way it was. And then it popped. In the hugest way possible. I spent my early years, before kids, helping others. I was passionate about Psychology and intrigued with the learning process that went into it. I worked at an eating disorder clinic. I thought it was what I wanted to spend my life doing, helping others. Woody and I got married. And soon after that, we were surprised to find out I was pregnant. And it was twins. It was a very shocking, happy surprise. After Liam and Quinn were born, they were all I wanted to do. Being a mom to the twins came naturally to me, like I had been waiting my whole life for it. I was young, didn’t have any mommy friends, and felt really alone though. Liam, Quinn, and Woody really were my entire world. I joined a parenting group, to make friends. We would meet once a week to voice our concerns, listen to advice, but it was more about making friends. I didn’t make many. I remember sitting in our classes and it would soon turn into a bitching session about someone’s husband. I would listen to people talk about their Nanny’s. Not many of the girls worked and I remember never being able to wrap my head around the fact that they didn’t work, but needed a Nanny. It seemed like a foreign country to me. I would show up for playdates. I remember people being shocked that 1) I didn’t have a Nanny ( uhhh.. i didn’t work and my husband was a Public Defender, so a Nanny was never even an option. I wouldn’t have taken it if it were anyway.) 2) The way they would make a big deal of me carrying in both of my twins in their infant carriers, without help. 3) The way they always assumed taking care of my twins was the hardest job in the world and they would always ask how I did it. I would just reply back, I didn’t know any other way. I loved every second of it.

I grabbed a couple close friends out of that parenting group. One in particular, named Gina. We met when our boys were about 6 months old. We instantly hit it off. She was such a free spirit, like me. She was real and always laughing and smiling. She would often call me up last-minute to ask if the boys and I could meet up to play. I would always say yes. It was the same way with her. We didn’t listen to they typical “mommy rules,” when it came to our 2 year olds. We would let them skip preschool and take them somewhere fun to play instead. They were always the kids that were laughing the loudest, causing trouble, running around, getting dirty and Gina and I spent every second with them, in the mix of it all. She was by far, my best mommy friend. Our boys were best friends. Than Ronan was born. I swear I blinked my eye and before I knew it, he was up and running right behind Arthur, Liam and Quinn. He was the 4th member to their little wolf pack and always caused more trouble than the 3 of them combined. Ronan was totally fearless and tended to show off and do naughty things just to get laughs from the boys. Gina and I soaked up every second of our boys, watching them learn about life and how to truly live like carefree little boys. It was pure bliss and we both knew it.

Then Ronan got sick. I was so wrapped up in Ronan’s new world and didn’t see much of Gina. She dropped off dinners a couple of times but that was about it. I felt like she was trying to help, but just didn’t know what to do. I was not the best at getting back to people so unless you showed up, pounding on my door, it was very likely that I had just stopped responding. There have been a few people in my life that have gone away who knew Ronan and I’ll admit, it hurts my feelings. But I also understand this is not a one way street and it takes a lot to be my friend now. I’m not afraid to admit that this may be much of my fault. It takes a lot to stick with someone throughout something like this. Gina went away. But I can honestly say, she was the one person, that I didn’t question and it didn’t hurt my feelings. I know Gina. I know the kind of heart she has. She has one of the purest hearts I have ever seen in my life. I know she went away because she was that hurt, upset, and sad for Ronan and our family. There was nothing selfish about it. It wasn’t about her; it was about us. That’s just the way Gina is. She is always thinking of others. Even though I haven’t seen much of her, I never doubted for a second that she wasn’t thinking of us. I know she was and always is.

I ran into Gina on Saturday at the boys’ basketball game. She came up and hugged me. She sat and talked with me for a while and I watched her fight back the tears as she told me how sorry she was, that she never knows the right thing to say. I told her that was the thing…. that she didn’t need to say anything because I know, even without her words. I know her heart and soul and she didn’t need to explain a thing to me. I meant that. I miss her. I miss the way our boys used to play together. I miss the way we would try to discipline them, but we would usually end up cracking up at the crazy things our boys said and did. I miss the way we would let their play dates last way too long and how we would always let them eat too much Ice Cream. I miss our spontaneous play dates and how we would ignore the world and just do whatever made our boys happy. I miss how we were driving in my car once with the windows rolled down and Ronan chucked a half full Gatorade Bottle out the window at another car going the opposite way. All the boys were howling with laughter. I laughed too but pulled over and went back to pick it up because, duh…. littering is not cool. But the laughter from the car, was priceless.

My life is different now. It’s sad and really empty without Ronan. But it has to go on for the sake of all of us. As much as I want it to stop, it’s not going to. I told Gina I missed her and I wanted to get our boys together to play. Will it be sad without Ronan? Without a doubt. Arthur loved him like a brother. Will it be painful for me? Without a doubt. But Gina is too precious of a person to not have in my life. It’s time to start letting old things back in because when you really find a true, real, genuine person in life… you don’t ever let go. Gina is that person and I am so thankful that she was blessed with knowing the real Ronan. The extra spicy most beautiful boy. She loves him. She will always love him. We all miss him.

I know this is how she will always remember him. Nudey at her house. He was such a little rule breaker.

I need a sign! A sign that hangs from my neck and reads, “I just lost my son to cancer. Please be extra gentle.”

Ronan. It’s bad here when I’m quiet. I know you know that. You know about the CT scan that I’ve had scheduled for Quinn now, for a couple of weeks but haven’t really said anything about it. He’s been having headaches. And in my mind now, headaches mean one thing. Why cancer, of course. Obviously. Because that is logical to the mom whose son who has just died of cancer. Logical, rational, and a given. So I have been sitting with that, for a couple of weeks now. That Quinn has cancer too.

Today was the day. I woke up, as it were just another normal day without you. Quinn knew we had an appointment and I worked really hard as to downplay it so he wouldn’t worry. We were on our way to PCH and the questions started. Questions once again, that an 8-year-old should not be worrying about but he does because this is his life. You. His best friend, got sick and died. He knows he could very well be next. Any of us could be and he knows nobody is immune to cancer. Such a big reality for a little boy to comprehend. But he does, so much more than I often realize. He is so smart and wise to the cruel ways of the world. I know his mind works a lot like mine in that he quietly sits back and absorbs in everything that is said and done around him. He absorbs it all, like a sponge and picks up on way too many adult like things. He’s has always been this way. I remember when he was about 3, I had to stop watching the news in front of him because he would ask so many questions about the stories that were being told, and he would worry so much about the bad things that were going on in the world. My very intuitive child. A blessing and a curse all at once.

As we were half way to PCH the questions started. “Well what if they do find something? Then what? Am I going to die?” I did my best to reassure him that he was going to be perfectly fine, but that we were just being extra careful because we all now know how precious life is. I spent the entire ride there explaining as much to him as I could without it being too much. He is so smart I know he read right though my B.S. I know he didn’t believe a word of what I was saying. I remembered how at when you first to sick, one of the first things Quinn asked me was if you were going to die. Of course I told him, No. I think back to this often and it destroys me. Not only did I fail you, but I failed your brothers because I made a promise to all 3 of you, that we would get you better. This is where so much of my pain and guilt comes from. It overwhelms me most of the time. I let all 3 of you down. That is a heavy weight to carry around with me every second of the day. But it is mine to carry and as a mom to you 3 beautiful boys, I don’t have a choice now. It’s the frame of mind that I am in and maybe someday, I will be able to let go of some of that weight. But not today. Not today as I walked through the doors of PCH with my hand intertwined with your brothers. Putting on my bravest face as I checked him into admitting while he watched my every move as I filled out his paper work.

“Where is Dr. Maze, Mom?” Quinn asked as he looked up at me with his big, curious eyes.

“He’ll be here in a bit. Just sit still while I fill the rest of this paperwork out.”

“Well what is a CT scan mom? Exactly? And how long does it take?”

“It’s where they take a picture of the inside of your head. It takes about 30 seconds. Then we will be done and can leave. It’s easy, fast and it does not hurt at all. You just have to hold still.” I said matter of factly as I am all too familiar with a fucking CT scan.

I finished my paperwork and a few minutes later we were taken back to the imaging center. The CT scan was done within minutes. We were sent down to the waiting area, to have a seat. We put our things down and I left them there so I could run Quinn to the bathroom. As soon as we came back a lady came rushing by. “Aubrey is looking for you,” she said. I told her thank you and I sat down with Quinn. Dr. Maze found us and did what he does best which is cater to the little ones. Quinn was putty in his hands. I sat back and tried my best to let everything slip away as I knew at any moment, the CT scan was going to be read and I was going to be teased about being the extra paranoid mother and sent home. Except for 2 minutes later, the complete opposite happened. I think Aubrey slipped around the corner for a second but not before the doctor could get to me to deliver the wonderful news. “Well, we found a small lesion. Which will require an MRI, but you can come back in about a month for that, because I am sure it is nothing.” Aubrey reappeared just in time to watch the color drain from my face and the tears well up in my eyes. “What?” I said. “You found something? There’s something there?”……. mama. breathe. do not get hysterical. hold it together. please. my brother is right beside you. he is so aware. he is scared you cannot panic in front of him. please. i will take care of him. I listened to your words as I gave Dr. Maze the look which was pretty much, what the fuck is going on and you have GOT to be fucking kidding me. This cannot be happening. Dr. Maze pulled Dr. icannotrememberhisname aside, around the corner so we could not hear what was being said. I’m sure it was something along the lines of, “This mother, just lost her son to cancer. He was a patient here. She is not going to be o.k. with waiting a month for an MRI. It needs to be done, today. As in now, so please make it happen.” Dr. nofuckingcluewhathisnamewas, reappeared again. “Dr. Maze told me your situation. We will do the MRI today, but I don’t want you to be upset, because I am sure it is nothing.” The tears were pouring and Quinn was pretending that he wasn’t watching, but I know that he was. I put the waterworks on hold as I had to step it up and put myself aside. It took everything I had, not to throw up all over that floor today, in front of everyone.

I wish I would have walked into PCH today wearing a sign around my neck that said, “My son just died of cancer. Please be extra gentle with me.” I wish I could wear that sign around my neck, always so people would know, you just cannot say to a mother who has just lost her son to cancer, “Oh. We found a spot. See you in a month for an MRI.” I’m sure it happens all the time. And not everyone has a Dr. Maze to swoop in and save the day. I am sure I would have found a way to tell this doctor today, about our “situation.” But I am so very thankful I did not have to. I don’t know how I would have said this, in front of Quinn, without scaring him to death. I don’t know how I would have said this today, without completely losing it.

Dr. Maze went back around the corner and I sat and looked your brother in the eyes, as it was his turn to let the tears pour down his cheeks. I grabbed his hand.

“Buddy. It’s going to be fine. I promise. We are just being extra safe, because it is smart to be extra safe. And we are a really smart family. You heard that Doctor. He wanted us to come back in a month, because that is how sure he is that is it nothing. And you know what? Normally, I would listen to that. But who wants to wait around to come back in a month when we can just get it done, today. O.K.? I know you are scared, but I promise you are going to be fine.” I have no idea, where I found the strength for these words today because the evil little voices in my head were saying over and over and over again…. “Your son has cancer. Your son is next. Everyone you love, is leaving you….. everyone you love is dying….. so just stop trying to fight it. He has cancer now, too. So sorry, but this is life and you cannot control a thing.”

I was able to calm Quinn down. Dr. Maze put an IV in his arm and we were sent off for our MRI. He said to me, “Do you want me to phone Woody?” I told him no, I would handle it. The thought of having to call your dad at this point was too much. I know how much he worries. How in the world was I possibly going to tell him, “Hey by the way, the CT scan came back and Quinn has a lesion, can you do your best not to panic and just come down here?” I was thankful when your Daddy did not pick up and it went straight to voicemail. There is no fucking way, I was going to put your Dad though that today, if this perhaps did turn out to be nothing.

“You’ve got this, Maya. You are strong. You do not need to worry anyone else, if it is not necessary. Just wait it out. Just get though this, alone. Woody. Poor Woody. Do not put this on him yet. You are here. You will deal with this.” A picture of your Daddy flashed through my head of him having a heart attack on the spot after my phone call. To me, I was saving his life, by just toughing it out, until I knew for sure what was going on.

We walked through halls of the new building, only to be taken right back to where it all began with you. It was an out of body experience as held on to Quinn’s hand and we passed by the Koi pond, by the PICU, when you first had your surgery. Where we sat and watched the electronic train and your little head, was wrapped up, like a mummy and your eyes were so swollen shut, that you could hardly see. The lady who walked us down the hall did her best to make small talk about the hospital. “Here is our wall of therapy dogs. They help the sick kids.” I just replied to her, that we unfortunately, were all too familiar with the pet therapy dogs. We got to the MRI area and sat and waited. I did what any totally awesome and rad mother of the year would do and put on South Park for Quinn to watch on my iPad. He was giggling within seconds and seemed to forget about the IV in his arm and the reality that hung over his head like a black, scary cloud. Our sweet Angela came out to give me a hug. Remember her? I know you do. She always took such good care of us. She was great today and helped to keep me calm with her beautiful smile and kind eyes. Plus it was comforting to me that she knew you, so she understood the best way to keep me calm which was just simply by being her sweet natured self.

Dr. Maze came busting through the doors, ready to get the show on the road. We put Quinn on the table so he could go into the machine. We put earplugs in his ears, I kissed him and told him how brave he was and how this was going to be a piece of cake. He asked if I would stay in the room with him. I told him, of course. I stepped out for a second to set my things down. Dr. Maze was still inside and I just looked up at him. I had no idea how I was going to get my feet back inside of that MRI room as they felt like they were stuck in quicksand. He said, “Aren’t you coming in?” I hesitated. I almost told him I needed to go and throw up first. I took a deep breath and said, “Yes. I’m coming in.” Once again, I didn’t have a choice. Quinn wanted me. Quinn needed me. So for me to have been anywhere else, would have been wrong of me to do. It did not matter how horrific it was for me to sit and watch him in that MRI today. All of the loud noises, flashbacks of you… I was so cold…. then so hot, light-headed, nauseous…. The MRI lasted 30 minutes. As soon as it was over, Aubrey in his ever so present voice came through the doors…”It’s normal. It’s normal. It’s normal. There is nothing there. He is fine.” The words, “It better have been fucking normal because I cannot talk anything else,” just flew out of my mouth. I hugged him. Told him thank you for the millionth time. He told Quinn to have me take up smoking to calm me down. I told him to shut up and that was an awful thing to say. I left there today with my arm wrapped around my little boy, my legs felt like jelly, and my head was about to explode. I managed to get us to the car. I called your Daddy to tell him everything. I was glad I did not give him the news before we knew what was going on. I was so happy to call him today and to be able to say, “Hey they found a little spot, but it is nothing. They did an MRI and it came back as normal.” Your Daddy just about passed out hearing those words. I calmed him down and he came to meet us as he knew I was very badly shaken up. Quinn’s lesion is just a normal development of the brain. His headaches are more than likely, caused from stress. We will of course continue to watch him and do whatever it takes, to try to help him not to worry so much. Poor little guy .

We got though today, Ronan, with a lot of love from you. You kept me calm when nobody else could have. You gave me strength, when I didn’t have any left. And you made it so that Quinny is fine and is not dying of cancer. Well, at least not today. I hate to sound like such pessimist, but it is a part of my personality trait now. I’m learning to embrace it and just roll with it. I don’t think I have much choice as I’m not getting rid of her anytime soon.

So much more to tell you. I took Quinn to Miss Katie’s later tonight. We played and worked. We hashed out the Fashion Show things which are coming along really well. I miss you every time I’m in her shop. You would have gone crazy over it. I had a Kathy stop by from MISS today. She works for Dr. J. She wanted to ask me if I would be an Ambassador for the MISS Foundation. We went over what all that meant and I told her I would be honored. I would do anything for Dr. J. I will touch on my next blog what I am going to be doing as I am much too tired to continue the writing tonight. You know I still went out for the nighttime slayer run though, right? Of course. It was awesome. Not another person in sight. Just how I like it. Dark, alone, and scary. After that awful day, a late night run was a MUST. I’m home. I’m safe. I wish you were home. I hope you are safe. You are changing things so much Ronan. It’s amazing to see and to feel. I’m sorry it had to be you. I’m for sorry, that I couldn’t save you, Ronan. I love you, Baby Doll. Sweet Dreams. Thanks for taking care of us today.

For you, I swear.

Ronan. It’s days like today, that scare the shit out of me…. because they do not. I don’t have ANYTHING I’m scared of anymore. I have things I worry about, of course. Obsessively. But fear does not register anymore. It’s weird to live so freely, yet so contained. My mind is going a million miles an hour today, with no end in sight. I feel like I’m on that carnival ride, the Tilt a Whirl, and I cannot get off. Life is just spinning, spinning, spinning…. everything is out of control, moving so quickly, and never slowing down or stopping when it should be. You died. The world should have ended too. It would have made sense to me, if it did. The pain I feel from losing you is so great, that I feel as if everyone else should be feeling it too. I know there are people, who are feeling a great deal of sadness from losing you. People you didn’t even know. People who you did know. Like your Godmama, Tricia Boo. Whom I sat with and had frozen yogurt with. I sat in the dark with her and listened to her tell me how she went out on Friday night because she is young, gorgeous, single, and that is exactly what she SHOULD be doing. She sat and cried to me and told me how guilty she felt about going on, about living life, because she never wants me to think for a second that she is not thinking of you, how unfair this all is, and how fucked up everything turned out. She sat there and tried to justify the happiness that she should be feeling, but she just is not because she is so jaded by this world. It hurt me to hear her say these things because all I want for her is to live her life, without having to worry that I think she is being disrespectful. I took some time to sit quietly with what she was saying to me and I finally just looked at her and told her I basically never wanted to hear those words, come out of her mouth again. That I never want her to worry that she could be offending me or hurting me, because she could not. And if she ever did, I would let her know. I told her how I know how much she loves you and she does not need to prove anything to me. Ever. I told her I am aware of the friends in our lives, who your death has affected so deeply. How by because of what we have gone through, their lives have changed, even in the smallest way. I notice it. I am aware of it. I am thankful for it. Not thankful for your death of course, but thankful for the way I am watching all of my little flowers bloom around me, because of the love they have for you. For us. I don’t need any of my little flowers worrying about being happy or having a great life. They were all meant to, Ro. They were meant to because you were part of their worlds and you affected them in such a way, that they will become more beautiful, because of you. What a gift you have given all of us.

So to all of my Tricia Boo’s, my Little M’s, my Susie’s, my Macy’s….. stop it. Stop apologizing for things that you do not need to apologize for. You all have proven yourselves more than I could have ever asked for. My Macy… I’ve been meaning to tell you to stop apologizing for not calling me on the 4 months of Ronan’s death. He loved you so much. That in itself means you are my sister forever. Nothing you do or forget to do, will ever change the way I feel for you. I expect you all to live your lives, just the way you are. As being the best versions of yourselves and being happy and thankful, because you know what it truly means to have been loved by Ronan. If there ever comes a time, that I am hurt or mad, and that day may come….. And it could be over somethings as silly as the time that I yelled at Tricia because I said she abandoned me, and then she and Macy ended up tracking me down on Camelback Mountain; because they were so upset over my words. What happened then? Tricia grabbed me, we cried, hugged, and apologized. But we were honest with each other and it only made us closer. You know what else happened? Macy flashed everyone she passed with the skirt she was wearing as she tried to hike up the mountain, in sandals. It made me laugh and love those two more than I ever thought possible. I know, Ro, who is true. So do you. That is the reason our lives are filled with the most beautiful people on the face of the planet. And I’m not exaggerating. If you are in our lives, there is a reason why…. so stop worrying, second guessing, thinking you have offended me or hurt my feelings. I promise you, I will let you know.

I fell asleep late last night. Once again, the thought of falling asleep without having you to kiss goodnight, is worse than any nightmare that I could ever have. I fell asleep but did the usual tossing and turning. I remember a bit of my dreams, but not much. I remember it had to do with the locket I have, that I put some of your ashes in. Somebody, and I cannot remember who, took my locket and threw it into a fire. I remember screaming hysterically and thinking that I was burning you all over again and you were going to be able to feel it. It was an awful dream, Ro. I’m so sorry. I woke up today, so tired from my restless night. I bounced out of bed anyway. I had a meeting to go to. A meeting that I’m not going to go into too much detail about because it is personal. And I don’t know if this person is o.k. with me blabbing about the things we discussed today. I know how to tip toe around things when I need to, as I don’t want to scare people off. I know I walk a fine line with the responsibility that comes along with this blog, but for as much as I am all about honesty….I do want to be respectful of others. Let’s just say, I met with a mom today. An amazing mom who knows what it is like to walk in my shoes. She took the time to meet with me, listen to me, hold my hand, to cry with me; but she also took the time to tell me this is livable. Her marriage survived. She still has her other kids, who have turned out to be amazing kids. She told me how she knows what the lowest of the lows are, but when the highs come along, they are unbelievable. She didn’t sugar coat a thing, which you know I love. I love to meet other people who are open and honest; it makes my heart happy. It’s funny throughout all of this, the people I am meeting. The people whom I feel like I’ve known my whole life, even though I have not. It was so easy to feel a connection with this mom today, because of the fucked up club we are in together. She is a firecracker, like me. She is a fighter, like me. She is ready to go to War. She is willing to do whatever it takes to help me get this message across. She is ready for the Sea of Gold, that is going to come. I know this is going to take some time, but it is coming. I will stop at nothing to make sure of this. And I love all of you, for being on board as well. Thank you.

After my meeting, I came home and went to meet Inferno Fuckwad Bob, at Camelback Mountain. Man, he was messing with my head today. I climbed that mountain, in the heat of the day, while dealing with him, screaming in my head. I have now convinced myself that everyone I know, is either sick, dying or leaving me. Ronan, you had to leave me…. so who is next? This is what Inferno Fuckwad Bob, is trying to convince me of. He’s doing a pretty good job because I spent a majority of the day, screaming and crying. I ran down Camelback at an insane speed. I fell hard, didn’t feel an ounce of pain, got back up and screamed to the world, “This is the best you can do!!! FUCK YOU!!!!!!!” I fell. Just like we all do sometimes do in life, all the time. I made a choice today. I could have cried out in pain and carefully continued down the mountain, watching my every step, tending to my bloody hands, bruised ass, and jacked up ankle; but I didn’t. I got back up, laughed, screamed, had someone ask me if I was alright, said “Yes, thank you,” and I ran my ass the rest of the way down to the bottom. Fuck you, Cancer. I hate you so much, that you make me stronger than I ever knew I was capable of being. I remember driving in the car, sobbing, and screaming out loud to you how sorry I was. I swore on my life, the life that I don’t want anymore, that I would not stop advocating for Childhood Cancer until people start to become aware and a major shift comes. I swore that to you today, out loud and I will not let you down, Ro. I don’t care if this does not happen until I am on my death bed, at 100 years old. It’s going to fucking happen. I have to take this anger I feel for losing you and turn it into something good. I HAVE TO, Ro. You were so gorgeous Ronan, that I know you will end up making this disease, which is so dark and ugly, into something beautiful. Something that people will no longer ignore. I know we will make this happen, together. Just you and me, Ro. Forever.

I love you little man. I’ve got to pick up your brothers soon from the airport. I miss you a million times a day. I love you more than you will ever know. I hope you are safe. I hope you were never scared. I’m sorry I couldn’t save you. I’m so, so sorry, Baby Doll.

xoxo

Losing you is like somebody just turned all the lights off

Ronan. I had a bad day. A day where I didn’t get out of bed until 1 or so this afternoon. I am in a funk and I can’t seem to shake it. I cannot shake being in this condo, which as I told you before, is exactly like the one we stayed in when you were so little. Everywhere I turn, I expect you to come running into the room. I think about you 24 hours a day. Today, everywhere we went, I was reminded of you. I hope someday this makes me happy, but as of now, it only brings me to tears. We had a family day out today. Once I was able to get myself out of bed that is. I tried so hard to enjoy life today, but the screaming in my head kept me from doing so. I can put on a good enough show to fool your brothers though. Thank god I’m such an amazing actress.

We took your brothers for pizza and wound up at the movies and saw, “Kung Foo Panda 2,” together. Seeing a movie used to be one of my favorite things to do. Now, it is so hard for me to sit still and focus on a thing and I was so grateful when your daddy asked for a refill for our soda,  so I could be the one to get up and get it. Before all of this, it was always your daddy’s job to refill our pop for us. Just something silly that I would always insist on him doing. Now, I happily was the one to do this for him tonight. I was crawling out of my skin during that movie. At one point, I started to cry. I was sitting between your daddy and Quinn. Quinn was holding my hand and saw the tears. He just took my hand and kissed it. I kissed the top of his head and told him I loved him. The movie was actually really cute. I know you would have loved it. It was all about finding your inner peace to be the best you can be in life. What I wouldn’t give for that. I used to have total inner peace. It is so hard to finally achieve that in life and then to have it ripped away over circumstances that you have no control over. You were the creator of my inner peace. You completed it all. Will I now forever be tortured, destroyed, and half of a person?? Walking around so numb and in so much pain that I am just thankful to make it though another day without you just so I can go to sleep in hopes of seeing you. Because that is what my life is now. I am trying my best to find the joy in the beautiful things that surround me, but the world seems so ugly without you. It’s as if the blue sky has disappeared, the birds have stopped singing, and the sun has stopped shining. I am thinking I am becoming severely depressed as I’m so tired of this life without you.

We are not going to Washington this summer to see Nana and Papa. It’s the first time that I haven’t been home during the summer in 18 years. Washington summers, especially after I had you boys, has always been one of my favorite places in the world. And to think last year, when we were there, your little body was so invaded with cancer. And we had no idea. We had the BEST time, just soaking up nature and enjoying the simplicity that comes with being there. It has always been such a peaceful place for me but this year, the thought of going there is much too painful for me to process. I’m so sad about missing the time with your Nana and Papa Jim as having you boys there for the summer makes their entire year. I feel like I’ve let your brothers down as they have been asking to go. I told them maybe for Fall Break. I tried to explain why I can’t take them there, but I don’t think they truly understand. I suppose anywhere we go, is going to be painful. But for some reason the thought of going to Washington without you is something I am not ready for. To be in my old bedroom, from when I was a teenager, where we spent every year, for the past 3 years together, snuggled up in my old bed…… I just can’t do it as of now. I don’t have the strength and that whole inner peace thing that I am now lacking would eat me alive if I were there. I’m sad about it and you know how much I am going to miss the time with Nana and Papa Jim. It is the first summer of missing so many things. Most of all, you.

So, I started reading this book called, “Growing up in Heaven.” I’m about 60 pages into it and I am really trying to keep an open mind about it as well as the author, as he claims to be a Medium whom can bring to light the journey of children who have passed from earth to heaven. You know I am all for that Medium stuff and I was hoping this book would give me some peace of mind. The first chapter or so, I was really getting into it. I then made the mistake of Googling this James Van Praagh guy as I was convinced that I needed to seek him out, asap, so he could help me get to you. Bad idea. As soon as I got to this guys website, I was instantly turned off. There was NOTHING authentic about it. It’s all glitz and glamour…. and it felt fake and phony. But guess what? For the small price of 4 grand, I can take a cruise with this dude and he will do a reading for me! I think I said it best when I sent a text today and it said how I was reading this book and how I was about to call BULLSHIT on James Van Praagh and his exceptional gift for communicating with the dead. So, I’m guilty. I’m totally judging a book by it’s cover. I’m a skeptic. Not because I don’t believe in things like this, because I truly do think that there are many people who are blessed with extra spiritual gifts in this world. But this man is talking about how the child’s spirit just comes to him and he is able to see them plain as day. I wish I could say thank you to this man because according to him, you are up in heaven, where everything is white and colorful, riding a fucking Shetland pony, all while getting an education AND helping others. If he would have left shit like that out, I may have bought what this guy is selling. Some of what he says, seems to be spot on with what I believe in about a person’s soul…. but the other stuff just seems like smoke and mirrors to me. He sure does have the part down about the grieving parent role though. Although, it is not rocket science. No shit that I feel like I have lost my identity, that I am in a robotic state, that I am numb. And no shit that physical fitness is a wonderful way to deal with stages of grief because I HAD NO IDEA that exercise releases endorphins into the bloodstream! This guy  is a genius!!! Oh Ro….. I have no idea where this feistiness from me has come from tonight…. you must be hanging around, channeling it into me. I loved it when I would call you feisty and you would scream back to me, “I NOT SPICY!” Still makes me laugh on the inside all of the time. I miss your little voice and how you would call me, “Mama.” Never mommy or Mom. Always mama. I miss it so much.

Anyway, back to the book baby. I’m being awful about it. But I’m going to finish it and I hope that I do end up believing in this guy because I would love nothing more, besides the obvious like you coming back, than to think that you are up in heaven, playing with your pony, helping others, and that you are so happy and free. I would love for that to be the truth because if you cannot be here with me, that is exactly where I would want you to be. Except the pony thing is a little weird. I’d rather have you playing with Master Yoda and Captain Rex instead.

I’m tired tonight my sweet boy. I’m going to take my Ambien and go to sleep with your brother, Quinn, who is right next to me. I love you so much. To the moon and back, forever and ever. Just you and me. Sweet dreams my monkey. I hope you are safe. You are forever loved.

xoxo

Dear overly concerned blog reader

I read your long comment today. I thought about it a lot. I just want to clear up a couple of things. First of all, a lot of the things I write, I write during the middle of the night, when I cannot sleep and my feelings come flooding out and rightfully so. I write without much thought, but with feeling instead. I understand how this may be misconstrued and sometimes I may be overly dramatic, but my feelings are always honest and true. The whole “no fear,” thing that has gotten a lot of people pretty concerned, is nothing to be worried about. I promise you all, I will not be jumping off the Coronado Bridge anytime soon. Am I less scared of things in life now that I have just lost my son? Absolutely. It would be one thing if I was shooting up heroin in the streets of a back alley, playing chicken with a train or even skydiving…. but come on peeps… I don’t even drink wine. I’m channeling my fear into doing things like surfing, which I’ve wanted to try my entire life, but was always too scared to. My running at night… what a stupid thing to be scared of before all of this. I’m always aware of my surroundings and it just happens to be at night when I am my most restless and taking my energy out on the pavement is my way of keeping myself in check. The living without fear thing anymore is coming more from a place of not being afraid to speak up, trying new things, and living a life that is worth living by putting fear aside and living with passion; as you never know when your time will be up. It is not about hurting myself, but more about pushing myself to be the best version of myself that I can be. To do that, a big part comes of letting go of fear. I am sorry if my posts sometimes get a little too dark, but darkness is a part of my life right now. I hope it won’t be forever, but it is here and as long as it is, I’m going to deal with it and not sweep it under the rug. I am hurt and I am sad. But I also have a conscious and a little chip programmed in the back of my head that tells me that I cannot get too crazy, because I have a family to live for. You know when you can all become officially concerned?? When I stop writing. When I stop speaking the truth. When I stop running and being active. When I stop being a mom. When I start doing every drug known to mankind and when I lock myself in my room and don’t come out for days. I just watched my son die and I did none of the things above. I’m pretty sure that I’ve hit the all time low that I’m going to hit and none of those things happened. So, overly concerned reader. You can relax. I am not going to let anything happen to Liam and Quinn’s mommy. This mommy was a mommy first to those to boys and I plan on staying that way.

I understand where you are coming from, but I can’t say I agree with much of it. There was a lot of judgement in your comment and you know I am not a huge fan of that. The fact of the matter is, you are just a reader. You don’t know me, my life, my family, and what goes on in our lives every second of the day. You are making judgements from an outsider looking in, by a blog that I am putting out there and that’s not fair. But it’s to be expected. It is my choice to write this blog, and I know judgements are everywhere and I’m o.k. with that. I am secure enough within myself to handle the daggers thrown my way. Are the things you said something that I would ever say to a stranger whom just lost their son? No way. Have you lost a child?? I am thinking not. You said you have lost loved one’s before, but I’m sensing not a child. That is like comparing apples to oranges and it has no relevance to a bereaved mother. Something in particular you said, was really out of line. You are putting words into my mouth and that is not o.k. with me. This was your lovely line: “you make it sound very clear that Ronan was your favorite child, and Liam and Quinn are being forced to live in his shadow. i dread the day they read your blog for themselves, because as much as you do love them – and it is clear you love them dearly – you state flat out that Ronan was your soulmate, your best friend, your partner in crime, your *everything*.”

So, lady….Wow. I’m not sure where to even start with this one. All I know is that I had no idea that I wasn’t allowed in my life to have all 3 of my children be my favorites, all three of them be my soul mates, all three of them, my everything. Because they are. If this had be Liam or Quinn, I would be feeling the same things I am feeling with the loss of Ronan. I love all three of my boys equally. Do I have different bonds with them? Of course. Was my bond with Ronan deeper? Yes, as of now, it is. But I think that is just a part of life, and bonds change due to time and circumstance. If you had just spent the last 8 months, fighting for your baby’s life, 24 hours a day, there is no doubt in my mind that the bond would be deeper and stronger than anything that has ever existed. To say that Ronan was my favorite is absolutely true. But so are Liam and Quinn. I love them just as much as I love Ronan and that will never change. I owe my life to Liam and Quinn because they have saved it. They are saving me every second of the day by reminding me of why I have to get out of the bed every morning, why I have to engage and interact with people when I really don’t want to. Those two little boys and my husband are the only things healing me right now. You really shouldn’t be afraid of the day that they read this blog; because they know in their hearts the truth. They will never doubt my love for them and if anything, I hope that this teaches them about the importance of living a life that is true and real. If you knew my twins, which you don’t, you would understand that they will not be scarred for life from this. You would understand that the things that they are learning from going through this are to always be proud of who they are, and they are both so different from Ronan. We embrace and encourage them to be who they are and always have which is why they are such amazing little guys. They will never live in Ronan’s shadow because to us, Ronan will never be a shadow. He will forever be a light that burns like the sun, he will forever be the most beautiful star in the sky. He will forever be the reason that Liam and Quinn hold their heads up high, love life, help others, and embrace all the beauty that they get to experience in a day, while learning never take things for granted. He will be the one helping as we push them to try harder and to become the best human beings that they are capable of. I, as there mother, will accept whatever this may be, whatever mistakes they make, by guiding them the as best I can and letting them learn by just loving them unconditionally.

I don’t re read what I write, but I don’t remember ever writing anything about telling the twins that they cannot express their fear. Am I missing something? If anything, I am pushing them to talk about their fear and whatever else they are feeling during the day. We spend a lot of the day talking about how they are feeling, what they are feeling, and I am teaching them that everything they are feeling, is normal and natural due to what we have just gone through. They cry when they are sad, laugh when they are happy, and are for the most part, are just trying to be little boys who are smothered with all the love in the world. Yesterday, when they were complaining about being cold in the ocean, not because they were scared, I made them suck it up and continue on. And I am so glad I did because you should have seen the waves they stared to ride and what a good time they ended up having. For just losing their brother, they are as happy as they can possibly be. They smile, laugh, fight, cry…. they do all the normal things that 8 years olds should be doing and Woody and I deal with it all by keeping our minds open and rules in place. We are taking this time at the beach to completely engulf ourself with each other. I feel like this is the best medicine. Not to shove therapy down their throats. What would you do? Keep them in Arizona all summer, throw them in a ton of therapy, all while they get to be reminded every second of the day that Ronan just died? No thanks, lady. I met with someone from New Hope in Phoenix who deals with grieving families for a living. She is very well-respected, educated, and this is what she does everyday and she has been doing it for a very long time. She loved the idea of us getting away together as a family, to take this time to heal, and to come back after the summer and start something together; as a family. She thought that was the best idea for us and I couldn’t agree more. This is our choice, not yours. This is working for us and as much as I may sound like I am not healing, I am. I have said before that I am broken into a million little pieces. But each day I can feel a piece being put back together and I believe a lot of it has to do with the fact that we are here, together.

As far as me calling you names for stating your opinions, that’s not going to happen. I don’t know you, so that would be totally unfair. I’ll just tell you to stick it where the sun don’t shine instead. Don’t even get me started on the not telling Liam and Quinn that Ronan is watching over them. What the hell is scary about that? If anything, while they are going through life, making mistakes and causing trouble.. if they choose to do so…. they will think of Ronan and know he would be laughing with them and right there by their sides. I am not going to turn this into a “OHHHH, you’d better not do anything wrong because Ronan “The Watcher,” will be there and he see’s everything you do.” Um, no. That is just creepy. I don’t think I’ve ever told them that Ro is up in heaven, looking down on them. It’s just been more of a Ronan is always with us, even though he’s not kind of a thing. He will forever be a part of our family and we intend to live with him in our hearts for the rest of our lives. They know he will be watching over them though. Guiding them, keeping them from harm, because now, he is their guardian angel.

So, overly concerned stranger. I probably should have just ignored your comment but I just wanted to set the record straight. We are doing the best we can and the choices we are making, are ours. All I’m asking is for a little respect and I have no doubt that mistakes will be made; but such is life. This is a learning process for all of us, but we are a very strong family. We are very strong individuals. We are going to be o.k. and we are going to heal, together. As much as I write things that are hard to read, it is my truth and I will not be denied of it. As much as I say I’m not going to survive this; I know I will because I refuse to let cancer have the final say.

The last little “proof,” that I am going to be o.k…. An email from my bestie today. She knows me better than anyone and she know what her role is right now. To love me and support me the way she always has and will always do. I love you, TT.

Just wanted to send you a note this morning to tell you how much I love you. I miss you. and how much I miss Ronan. Marisa and I got to have a little dinner together last night and we talked about him for a long time. I feel like I haven’t gotten to talk about him with people as much, they are scared to talk about it. But not me and Ris, it felt good and made us happy to remember. We talked about him as a baby, how he was a little devil, how he was the most beautiful baby we’ve ever seen and mostly how we still feel him around all the time. Marisa says she sees him in so many things that are beautiful, everyday. I told her about the hummingbird and how I don’t normally believe that but I couldn’t help it this time. I’m sending you a big hug and letting you know my heart is with you every second of the day. I’m thinking about you and Woody and the boys. I am with you in the no fear living…nothing will ever be the same. You are doing an amazing job, getting out of bed and being a strong mom for the boys. No one will ever question where Ronan got his fighting spirit. Continue to fight for each day , for him and the boys. I love you and miss you more than you know.

To everyone else who is concerned or worried. Thank you. Thank you for being worried and for good reason. But that you for doing it in such a way that you make me feel loved and not judged. Thank you for saying the right words, even when you say nothing at all and for respecting my space. I love you all so much. G’nite to you all. Sweet dreams. G’nite Ro baby. I missed you today. I missed you every second of today like I will do everyday for the rest of this long life without you. I hope you are safe.

xoxo

The circle of life…. sucks

We woke up early this morning and ready for our clinic day. Fernanda, who flew all night arrived just as we were getting ready and ran down the street before seeing us to grab me a coffee. Ronan and I went out on the street to meet her and I cannot tell you the wave of happiness that washed over me as I saw my friend and her gorgeous smile, waiting across the street for me with two coffees in her hands. I was so happy to see her and we held each other tight as we embraced for our hug. She has such a way with me and I am instantly comforted by her mothering instants. I often feel like she is not only helping me take care of Ronan, but she is so good at taking care of me as well. I usually have a hard time letting go and letting other people do things for me but with Fernanda, it just comes naturally. I feel like she is my female version of Woody, if that makes sense. She is a source of such strength and comfort to me, much in the way that Woody is. I always know that when Fernanda is around, that everything is going to be o.k. Trish asked me tonight how in the world Fernanda does it all. My reply was because she’s Mary Freaking Poppins. Seriously. There are not many women in the world like her. We have such a strong connection and I am often amazed at the way we sync so well. Many times, I will be thinking about her, and then 10 seconds later she will call or text me. Our minds seem to be thinking the same thing and all I have to do is look at her to know this. Words are sometimes not even necessary. I am so honored, blessed, and thankful to have her here with me. I will never get over her leaving her 5 beautiful babies and husband at home to help me and as much as I tell her this, she acts as if it is nothing, but it means the world to me.

After I reunited with Fernanda, we headed off to Sloan to get Ronan to the clinic for his platelets. He was not happy about going and being “hooked up,” as he calls it. But I assured him it would only be for a short amount of time. We arrived and the nurse got things moving pretty quickly. Ronan was entertained by Fernanda waiting on him hand and foot and we promised him a trip to Toys R Us after we were done. We finished with our platelets quickly and went to meet with one of  “The Team,” members to discuss the plan for the next couple of days as far as scans go. Ronan coroporated for his exam and we were soon out of the door and off to enjoy the rest of the day. We decided to walk to Toys R Us, which was about 3 miles away but Fernanda and I agreed that the exercise and fresh air would be good. Almost as soon as we started our walk, Ronan fell asleep in the stroller and remained that way the entire trip there. It was a fairly wet, dreary, New York day, but I am such a sucker for this weather that I enjoyed walking in the rain.

Toys R Us was a hit but it was packed full of so many people. With Passover, Easter, and Spring Break here, the streets of New York are just as busy as Christmas. We couldn’t escape there soon enough and hailed a cab back to RMH instead of walking again. Fernanda picked up food at Delizia’s for us and we ate it together on the second floor in the community dining area. After lunch, she headed back to where she is staying so she could get in a little nap. Ronan and I were both tired too, so we came back to our room to rest. Before we came back to our room we went to check to see if we had any mail. We were told we did and it was a big box from our favorite little boys’ line; Fore!! Axel&Hudson. We took the box up to our room and I helped Ronan open it up. It was full of the most adorable clothes and hats for Ronan, as well as the cutest little girl Fedora hats. I handed out the hats to a bunch of the girls here and they were so excited. I think the moms were more excited as they kept trying to see if they would fit their heads. It made me feel so good to light up the faces of these beautiful girls today. Thank you Denise, for allowing me to hand out such amazing gifts. Ronan, being the stylish kid he is, lit up like it was Christmas. He kept trying to wear three hats on his head at once as he said he couldn’t choose because he loved them all. Denise, if you are reading this, please know that you and your company are absolutely amazing to support pediatric cancer the way you do. You are inspiring, brilliant, and if the world were full of more people like your company, it would be a much better place. Not to mention, the quality of your clothes are to die for! I am so proud to put my little Rockstar in your gear. Thank you from the bottom of our hearts. Everybody needs to check out their website, I should have a link on the side of my blog. I will forever support you and your clothing line. It makes Ronan’s day to be all dressed up in your adorable boy clothes and hats.

After we woke up, Fernanda texted me to say she was ready to come back over so I could go on a run while she watched Ronan. My run didn’t end up happening as we went across the street to Barbra’s apartment, who runs the organization Candlelighters, as she had a Star Wars treat for Ro and I wanted her to meet him anyway. We stayed for about an hour and enjoyed the company of Barbra, her husband, another mom, and her son, Jack. It was soon getting late so we headed out to grab dinner before Ronan got too tired. We sat and I ate for Fernanda. She talked me into some protein and asked if I really wanted to eat it or if I was just doing it for her. I told her it was all just for her and I did the best I could on the food in front of me. She is such a mother hen, which is a very good thing for me now. There was some awful woman sitting next to us at dinner and I was wondering if I was the only one picking up on it, but I gave Fernanda my look and I knew she knew it too. She kept looking at Ronan and it was if she wanted to throw up her dinner. She kept giving us the dirtiest looks and I wanted to say to her, “I’m sorry, if the fact that my child has cancer bothers you so badly that you can’t  eat.” The look of disgust on her face was so obvious that I wanted to go over and strangle her. When we were walking out we got a few more looks or more like complete stares. I noticed them all and Fernanda did too. She totally gets what I was talking about yesterday on my blog. The staring is everywhere. If you’re at least going to stare, have the balls to come up to me and say “God bless you.” Or “We’ll keep him in our prayers.” Don’t just be rude and stare. Grow some fucking balls and be proactive about him, who has a name. His name is Ronan Thompson, and he lives on this fucking planet. Stop acting like he’s from outer space. Somethings gotta change because if this  keeps going on, I may go postal on someone’s ass. After dinner we came back to RMH and played with Ronan. He was tired from todays events, as we all were. Fernanda hailed a cab and went back to her place. After she left, Ronan decided he was still hungry and he wanted scrambled eggs to eat. I happily made them for him with extra butter and extra cheese. Anything to fatten my baby up. We sat while he ate and talked with some of our friends here. I’m not going to go into details but I am saying extra prayers tonight for a very special little girl here whose mother I have fallen in love with. She isn’t doing too well and watching what the mother and father are going through is heart wrenching. It is a place that no parent wants to be and all I can say is another big Fuck You to cancer because there are no other words.

While I was taking Ronan upstairs to get ready for bed I was talking to Woody. I guess he told me last night but I was asleep and don’t remember our conversation, but our little wiener dog, Monroe, passed away. As soon as he said those words the conversion we had the night before slowly started to creep into my head. I started sobbing hysterically. Our two dogs, Monroe and Douglas haven’t lived with us for about 3 years due to trying to sell our house, then selling it and moving into our new house, so they have lived with Woody’s parents who also had 2 wiener dogs. While my 2 were there, one of their dogs passed away so we just ended up leaving our 2 so they could be with the one dog Kay and Charlie had left. They were happy there, together, and Woody’s parents have the perfect back yard for the 3 little musketeers. We missed them a lot but life all of a sudden got so busy, and we would spend time with them when we went over to their house. Little Ro, as we called her was an itty bitty thing. She loved to lick you and be held and was always shivering because she was cold. She was the sweetest thing. Hearing that she passed away hit me harder than I though it was going to, considering what we are dealing with now. It still made me very upset as it’s watching the cycle of life and that is never an easy thing. Woody bought those dogs for me before we got married. They were our first, “babies.” Tonight, I will say a little prayer for my little mohawked Monroe. She was the best puck rock Dachshund that ever lived. R.I.P little Ro. I’m sure we’ll hear your barking all the way down from heaven:) We all loved you so much.

So tomorrow. Ronan has a CT scan at 11:30 and we are tying to do it without anesthesia which I totally think he can handle. We of course need this scan to be good and I know they will be good. I have faith, hope, and love surrounding me at all times, so it cannot go another way. Please pray for him extra hard tonight. I will update you as soon as I can.  Thank you all my beautiful souls. You keep me strong when I am at my weakest and you push me forward when I think I can go no more. With all of you on our side, we can get my baby boy through this. Cancer has no idea how strong of a child he is and who they are messing with. They picked the wrong Ronan “Fucking” Thompson. I wonder when Ronan does beat this if they would really let me change his middle name to that. I’m sure not, but writing it out cracked me up tonight. He surely deserves it. My strong son, my strong boy, he will not be defeated. He is going to come out the other side of this with such determination to do amazing things in life. I cannot wait to see what kinds of things he comes up with and I will fully support him in everything he does. A mothers love is an unrivaled force of nature.

Ambien kicking in. I’d better get off this computer before I start writing crazy things. Good thing I don’t have a car to drive;) Totally kidding. I am going to cozy up in my twin sized queen converted bed with the most beautiful boy in the world. Just don’t tell my husband.

G’nite peeps!!!! Have a beautiful day tomorrow. G’nite Daddy Woo, Liam, and Quinn. Miss you!

Extra special G’nite to my twins’ 1st grade teacher, Mrs. Martin. Hope you had a beautiful birthday day, Cindy. You deserve it so much for being the best teacher we’ve ever had. We love you so much.

xoxo

Soho and a Circus

Ro and I started off our morning the way we usually do. Cuddly and quiet. We sat and played in his bed and enjoyed our quiet time together. My mom came to the hospital with Tricia around 11. So happy to see my bestie. Ronan was not a happy camper at first, but he soon warmed up to Trish. It’s his whole I know my mommy is leaving thing that gets him into his little moods. I told him I was going home to shower and he agreed to let me. Thanks Sarg, as my New York Miss Macy likes to call him. I headed out the doors of Sloan with Trish and we went back to the RMH so I could shower and get ready for our few hours out. We figured out which Subway we needed to get on to get to SoHo… Woody  would have been SO proud. I am determined to master that thing by the time I leave here. We spent a few hours in Soho roaming the streets and had a bite to eat. It was so nice to catch up with my TT and to actually get to hear about things that are going on in her life. She is so concerned with mine that the phone conversations we have usually consist of what is going on with me and Ronan. I hate that. I hate that I feel like I am missing out on the little things that are going on with her, even if it is knowing what she is doing for lunch. I used to be so spoiled in that regard and would know what her entire day/night consisted of. I miss that so much. The simple things, the little things, the nothing is new because we talk 5 times a day about anything and everything and nothing. There is no more nothingness now as everything is wrapped up in this cancer cloud. The innocence has been lost forever in my life and I will never get it back. Neither will my best friend. But we keep holding on, telling each other that we will be stronger after all of this. Totally see a trip to Vietnam in our near future, TT 😉

After our Soho day out, we rushed back to RMH and I threw together my overnight bag so I could return to Sloan. My friend, Ed, emailed me a couple of weeks ago in regards to seeing a Broadway show. I told him about my mom and Trish coming into town and the next thing I knew we had tickets to “Billy Elliot.” Somebody he knows (a very kind person indeed) treated us to the show. THANK YOU, Ed’s friend:) I wasn’t able to go, due to Ro being in the hospital so I sent my mama, Trish, a woman, Barbra who runs this amazing organization called The Candlelighters in NYC, and a mom and daughter(who is 7 with cancer) to the show. They had an amazing time. It meant so much to me. This is my mom’s first trip to NYC and one of my wishes was for her to go to a show on Broadway. It should be something that everybody checks off their bucket list. It felt so great knowing that my mom was getting to do something that is so special to me; she deserves it so much. Thank you, Ed for organizing this. Thank you, Barbra, for taking such good care of my mom and Trish. They loved you and I cannot wait to spend more time with you. What you do for other cancer families is simply amazing.

I spent the night here with Ronan doing our usual thing. We made slime with the Childlife guys, played more Star Wars and I fed him dinner. We had a very special visit with my dear friend, Niki. It was comical and sad all at the same time. Niki, who is here with both of her young children put them in a cab and came to Sloan with cupcakes and dinner for us. I told Ronan that they were coming by and asked if I could go out to the elevators on our floor to say hi and grab our food. He said yes but was upset they couldn’t come in our room to see us. I left him in his bed and ran out to see Niki and the kids. I was greeted by the best giggles, smiles, hugs, and tears in the world. It was so nice to have my friend wrap her arms around me and hug me the way she does. She gives great hugs. I chatted with them for a few minutes then decided to go back and see if Ronan would come out to say hello. He agreed so I picked him up, and wheeled his “asspole,” out to the floor of our room. As I was wheeling it down the hall I was suddenly hit with a moment of panic wondering how Laely and Wesley would react to Ronan’s pole and the tubes coming out of his little body. My panic almost stopped me in my tracks but I then remembered feeling the same way over Laely seeing Ronan’s bald head for the first time and the conversation I had with Niki about it and how Laely didn’t even notice. To her, she was just seeing her friend, Ronan. She doesn’t get that he has cancer (they are the same age) she’s not scared of him… to her, he is the same little boy as always. The world is exactly as it should be in her eyes. Seeing those 3 kids tonight was the best medicine in the world. This is how our world works now, and we have to make the best of it. So tonight, Ronan got to see his friends through the glass doors of our floor as they could not come in and we could not go out. I held Ronan and watched as Laely and Wesley smushed their faces up to the doors and I got down on the ground and kissed them through the glass. We laughed, played, and loved. It was the best 10 minutes Ronan’s had in a very long time. Made both of our nights and we all parted way smiling.

Ronan and I then came back to our room to prepare for our nightly walk. Tonight though, he insisted we take all 4 of his guns with him and the very special balloons that were delivered to him from Dr. Maze today. I tried to talk him out of him out of taking the balloons with us, but he went into complete meltdown mode. (Thank you, Aubrey… you would have loved the smile those balloons got you:))) Ronan wins. I tied the bundle of the biggest, cutest, animal balloons in the world, onto his pole and I somehow managed to walk the halls with him for 30 minutes without breaking my neck. I couldn’t see a thing and everybody kept saying we looked like a circus. We got a lot of laughs tonight and went on a very special mission to try to find our nurse, Jen, who was hiding from us on the floor. She would jump out at random places and Ronan would blast her with 2 of the 4 guns that he made me carry. Very entertaining night around here. I swear, I’ll do anything to hear Ronan laugh these days.

After our walk, Ro was worn out so we came back to his room and snuggled in his bed. He kept telling me how much he loved me and we sang our nightly “Twinkle Twinkle Little Star,” together and he soon drifted off to sleep. I am listening to his little breaths as I sit beside him and write this. It’s my favorite part of the night, watching him sleep. We’ve been in the hospital for 3 weeks now, 21 days, 504 hours…. this is complete insanity and unfairness. I would give anything for this to all go away. I would give anything to be at home with my family, where I belong, taking care of my Liam who had to stay home from school today because he is sick with the flu. I would give anything to be the normal mom again. Except this time, I wouldn’t whine about my child throwing up all day due to the flu. I would be SO VERY THANKFUL. I cannot wait for the day that Ronan is well and this happens to me. One of my kids gets sick with only an ear infection, a cold, or the flu. It will be one of the best days of my life.

While I was sitting here writing tonight, I got an email from my friend, Jon who is cousins with the little girl, Phoebe I talk about sometimes on here. She was Ronan’s last roommate at Sloan and I just had lunch with her mom the other day. Jon came to visit us a couple of weeks ago before he took the train to visit Phoebe and her family. Love him.  I’ve been feeling pretty strong these past few days but a paragraph into Jon’s email and I was bawling like a baby. Not because I was sad, but because the things he wrote to me hit such a nerve. His words were filled with such truth and light and it was as if a little light bulb went off in my head. “DINGDINGDINGDING!!!!” I am doing this. Woody is doing this. Ronan is doing this. Phoebe is doing this.  We are all doing this and we are all going to get through this. We are too strong not to, Ronan is not going to let this cancer crap win and neither am I. Jonathon, somebody who did not know us at all, knew this after only spending a few days with us; just like the way I knew it about Phoebe within a few minutest of meeting her. She had this look in her eyes and I just knew she was going to come out the other side of this only more beautiful than ever. The same look that I see every time I look into those baby blues of Ronan’s. Fuck the statistics and fuck the odds. I refuse to listen to them because they have nothing to do with Ronan.

I’m ending my writing tonight with  Jonathon’s email (with his blessing) because his words are raw and real and give me strength. I love you and your beautiful family so much. Thank you for this gift tonight, my friend.

Goodnight to you all, my lovely souls. Thank you for all of your kind words, thoughts, prayers, support and love. But most of all, thank you for BELIEVING.

xoxo

Maya,

This is a quick note, not meritorious of a response. I’m writing tell you that you are a fucking badass. I’ve attempted to think of other ways to write this, less vulgar, more poetic, but fuck that.
I met a lot of folks at Sloan, visiting Phoebe for 6 months, or 8 months, or 10 months, or whatever the hell it was. And I worry about her every day, still. But the point of this note is to tell you that I knew you and Ro for only 4 days, and I saw that you were tired, and pushed against a wall, and still, more than anyone else I’d met, I knew in your eyes that you’d already won.
This was easy to see. I saw your resilience.
I don’t know anything about life. You called me out as a young fool, and you’re right, I know jack shit.
But I saw you, and Ro, your chests held high, and your smiles wide, and I felt your presence. Through those hideous turquoise plastic-felt curtains they threw between us, I felt your laughter, and your brilliant fuck-all attitude regarding the drivel we go through.
So this is one STRONG vote, from a kid in Chicago, saying laugh at their shit. Laugh at the crappy cots, and laugh at the exuberant candy-stripers, and laugh at the folks with FAKE smiles, because, let’s be frank, this is some bullshit. But that’s okay. Bullshit is bullshit is bullshit, and when I saw you, and Ro, and Woody, I saw the people I’d stake my livelihood on. I saw people I’d lay down in front of a train for.
Thanks for making me proud. Next time you feel that it’s too much, don’t worry. Just know that you’re already the most badass person I’ve ever met. You can do anything.
With love,

Jon

Welcome back, hospital insomnia

Beeping machines. Check. Headache. Check. Cold hospital room. Check. Missing Woody. Check. Hospital insomnia back. Check. Check. Check. Where does this leave me? Miserable. With a foggy head. I really, really, tried to go to sleep without my sleepy meds tonight, because I thought I left them at the RMH. I’ve lain awake for 3 freaking hours now. Tossing. Turning. Had a slight panic attack and thought I couldn’t breathe. It was only out of sheer terror and desperation that I dug though another overnight bag and thank the lord, found my Ambien. Waiting for it to kick in and trying to ignore the little voices in the back of my head saying they can’t believe I have to take prescription meds to go to sleep. STFU. Nothing to feel guilty about… but was all so foreign to me, until now. I gag taking Advil. Never in my life had I had to take medication to sleep. Sleep always came so easily and peacefully to me. Guess that changes when your child gets cancer. At least it has for me. Everything has changed.

I tossed and turned and sat and over-analyzed everything like I always do. I worried myself into a panic about a friend who is flying back to Phoenix tonight. I told him I needed to know he was safe so I could sleep better. I texted Woody to let me know when he arrived to Phoenix because I needed to know that he and Quinn were safe. I sat and obsessed over these things tonight for I cannot take something else happening to the people I love. Now, I will sit here and obsess over my mom getting into New York safely and hoping that she easily finds her way to the RMH. She’s never been to New York and I can tell she is nervous. I wish I could be there to meet her but all I can do is sit and wait for her to call so I know she’s o.k. I worry a lot when I don’t sleep and my overactive imagination goes into full effect. Then there’s the damn beep beep of Ronan’s fucking pole again. I have to get up, buzz the nurse, and say, “We’re beeping!” I’ve done this only 5 times tonight. Awesomeness. I much prefer my coma induced state of sleep that I was able to have the past few nights while I slept at the RMH with Quinn. My little blue friends better start working soon or I am going to be a zombie tomorrow and I hate being that way. I was so looking forward to some nice time with my mom and Ronan… do not want grumpy Maya to make an appearance. Nobody likes her.

Our roommate is really sick. So sick that I can’t sleep because I am so sad for him. He has a very rare form of brain cancer. He has a big bump on his head from it and can’t really talk or move. He is a little younger than Ronan, with the most beautiful face and the longest eyelashes. His parents are such good parents too. You can tell that they are as in love with each other as they are their son who is fighting so desperately hard for his little life. They sit and play memory and other games with him all day, but he gets tired easily. Today, he slept the entire day and has thrown up on and off. I wish I had a magic wand to make him all better. If love could fix the problem, he would be healed because the way his mom loves him is one of the most beautiful things I’ve ever seen in my life. She is a very good mom. And you all know I have high standards. It takes a lot for me to call another mom a good mom, and this lady should win mama of the year. Her patience, love, and kindness for her child makes me smile. It gives me hope that he is going to be fine; just like Ronan.

You know how I know Ronan is going to be fine?? Because of my insight. And because of the very insightful people who I surround myself with and they know it too. Like Mr. Sparkly Eyes, who I was texting a couple of days ago after I was having a bad day and I told him I just needed to hear him tell me that everything was going to be o.k. He responded with “I do believe Ro will overcome this.” He wouldn’t just say this to me if he didn’t feel it or believe in it. Same with Fernanda. She has great insight to things and told me this morning that she has no doubt that Ronan is going to be o.k… and she will watch him grow up into a beautiful teenager. There is something about the two of them that I trust and believe in what they are saying 110%. They are my Ronan whispers. I don’t see Ronan not surviving this and maybe I’m biased because he’s my child and maybe this is the way every mother feels when facing this situation…. but I don’t know. I just have such a strong sense that these hard and scary times are going to be worth it because in the end, he will still be here; where he belongs which is on this earth doing amazing things. Woody and I both know it is going to take a lot of work to get our son back, but we both do not doubt that it will happen and we are in the best place where they are going to make sure it happens. I have an inner peace about this. I trust my insights, my gut, the flashes of things I get that pertain to my life. TRUSTTRUSTTRUST. This is all happening for a very good reason. A huge mother-fucking rainbow at the end of the storm!!!!!!!!!

Holla!!! New York better be prepared! Miss Macy is coming for a visit!!!!! I’m so excited! She just sent me a text saying she will be here April 14-17th. I have the most amazing friends that refuse to let me be here alone and are filling in for Woody when he is gone. Trish has her ticket booked, Fernanda is coming, Niki, Stacy, Tiffany, and I have a whole line-up of people who are dying to come out next to help. I love my friends so much. I don’t know what I would do without them.

Alright. Officially getting tired due to my “friends” starting to work. Thank GOD for Ambien. Nighty Night peeps!

Deep breaths, Patience and Xanax

Fork em' Devils!

What a long day. We don’t know anything yet but should know the results by tomorrow afternoon/evening. Now Dr. Eshun will meet with a team of doctors to go over the results of all the scans combined, with a fine tooth comb. Waiting is the hardest part. Sleep is going to be extra difficult tonight. UGH. I hate these nights.

Today, we started out at the clinic just doing Ronan’s normal labs. He needed to get blood, but we did not have enough time to do it before we had his MIBG scan. We will go back tomorrow for a transfusion as his counts were a little low. We did have some time to kill in between the clinic and our scan time so we went to the car wash and ran home for about 15 minutes. We then headed back to PCH to get ready for Ro’s scan. He was in a pleasant mood today and was excited as always to see Dr. Maze. We brought him a coffee and Ronan introduced Dr. Maze to his favorite show that he was watching on his iPad, Max and Ruby. Dr. Maze and our favorite of his helpers, Angela, were eating Ro up like always. We had some fun play time with them before it was time for Ronan to get his “sleepy medicine.” We did the usual, I held him, and Dr. Maze injected him. Ronan cried out his usual, “Mama, Mama, Mama!” I put on my brave face and gave Dr. Maze the look he knows so well now, which is, take the best care of my baby ever. I don’t even have to say the words anymore. He knows and he does. So thankful.

I walked myself out to the waiting room where Auntie Karen and Fernanda sat waiting for me. I am so glad they were there to keep me company today. They kept my mind occupied and I am so happy the two of them finally were able to meet. I am so used to going to PCH alone and by myself and I never realized how much work it is for me. Today, after Ro came out of anesthesia, Fernanda went and got my car for me so I didn’t have to walk all the way to the parking garage while carrying my bags and Ronan as I usually do. Today was easy and I am going to try to make myself take the help from my friends more often. It makes all the difference in the world. They kept my mind busy and my spirits happy. Thank you both for today…. I know I tell you all the time, but I love you so much. Ronan woke up a little grumpy and just wanted to get out of there asap. That is precisely what we did.

We came home to Mimi and Papa helping Liam and Quinn with their homework. Ronan was starving so I made him his favorite scrambled eggs and he scarfed them down. Woody came home soon after and we snuck out just the two of us for dinner. It’s been so long since just the two of us have gone out alone. It was nice to just sit with my husband and try to be as normal as possible. I caught myself laughing easily at his funny stories and we got caught up on our plans for the weekend. It was a very nice, much needed night together. My mom comes into town tomorrow until Monday and I am so very excited to see her. It should be a busy, fun, weekend <3

Fernanda sent me a text tonight that melted my heart. She said one of her little boys’, Brando, who is four, was at school today and a little boy asked him where his mommy was. Brando told the little boy that his mommy was at the hospital helping a little boy grow back his hair. That is one of the cutest things I have ever heard and filled my heart with so much joy. Fernanda is doing so much more than that; she is teaching me what it truly means in life to be an amazing person to the core. What it means to live a life full of passion, laughter, and love with just the right about sass to go with it. Fernanda is the kind of women who can light up a room with her quick wit and bright eyes. I told you she has the same sparkle in her eyes as Ronan and I find so much comfort in that. Even though what we are going through, sucks balls, I am so thankful for the beautiful souls that I am surround by. If not for this, I would be missing out on all the loveliness that has surrounded me for so long, but I just didn’t know how beautiful it truly was until now. Everyday is a combination of heaven and hell…. it’s a beautiful, tragic love story to the fullest.

Deep breaths tonight. Hot Yoga at 5:30 a.m. Yes, please. I will be there and I will be focusing all of my energy into my Ronan baby like I always do. We need some good news tomorrow. Please.

G’nite and sweetest dreams to you all. Love you for checking in on us and loving our little Ro so much.

xoxo