There Are 2 Things in Life I Will Never Say No To. Anything That Has To Do With You and New York City.

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Ronan. I know I’ve been quiet. I know you all worry when I am quiet, but I promise I am o.k. O.k…. I’ll admit it. I did see my life flash before my very eyes a couple of days ago when I found myself in bed, on my 6th Cadbury Cream Egg, and watching “The Kardashians.” I had a moment of sheer panic wash over me as I thought to myself, “Who am I?? In bed? The Kardashians?! OMG. I need an intervention.” I felt myself slipping into a deep depression that I hadn’t felt in a while. After the whole White House petition, I knew I was due for a breakdown. I had spent so much time working on it, losing sleep over it, and mostly obsessing over it… I knew I was going to crack. Then, the very itty bitty baby contractions started. OUCH!!!! Ummmm… ouch!!! It’s much too early for those. I was put under strict orders to slow things down and to stop with the stress. That’s what landed me in bed and somehow sucked me into the land of reality television which is so far from reality that it makes me want to barf. I sat in my bed for a couple of days and pondered life and death. The whole, what am I doing thing? Where is Ronan? And how in the world am I living without him? I did my best all week to do the normal mom things that I have to do to run our house. A Target trip that seemed so overwhelming to me that I had to sit in the parking lot and sob for a good 20 minutes before I could even get into the store to buy the one item I needed. Only my Dr. Bronner Magic Soap that I am obsessed with could have gotten me into that store and I was totally out, otherwise I would have aborted mission. I’ve been trying all week to get over to PCH to grab your Captain Rex costume that we used to decorate the Christmas Tree. I have been mentally visualizing myself walking into that hospital but then having to walk out with my dead child’s costume. In my mind, I’ve walked out with your costume at least 50 times. Through my flood of tears I sent your Sparkly a text, “Can you please get Ronan’s costume for me. I have tried to get it about 3 times, but all I can do is sit in the parking lot and cry.” “Of course I can. Consider it done.” he said. You’d think with all the shit I do, that walking into a hospital to get your costume would be easy, right? Well, that’s the world I live in, Ronan. To me, the littlest things can sometimes seem like the most difficult. I would rather jump out of an airplane, 10 times then have to walk out of PCH with your Captain Rex costume that you will never wear again. Walking in with it was easy. It’s the walking out with it that I just cannot bring myself to do.

I am really glad I did not die by the death of too many Cadbury Cream Eggs and The Kardashians. I am really glad about that because of days like today that seem to just magically fall into place when I need a big slap in the face of why what I am doing, is so important. I had a little secret very important meeting today. Your Fairy RoMo just happened to be in town for this meeting. One that I so badly wanted her at and one that she so badly wanted to be at but did not think she could come for due to her crazy work schedule. The stars magically aligned for the worst reasons possible so your Fairy RoMo has been in AZ for a little over a week now. When I remembered this meeting was taking place, I of course told your Fairy RoMo about it and she was more than happy to go with me. Our super secret meeting required us leaving my house at the butt crack of dawn this morning and driving half way to L.A. a.k.a The Wigwam Resort in Litchfield Park, AZ. I was excited about this meeting but as always I go in not expecting a thing. I have taught myself it is better to go into something not expecting a thing that way less disappointments occur.

Can I just say today, I am so glad I had your Fairy RoMo there with me not only as my dear friend, but as a witness to the amazingness that occurred. Because if I would have left that meeting today and had to report back to your daddy/board members about the conversation that was had, they would have all told me to get out of my fantasy world and back to reality. We both left our breakfast/meeting, speechless to say the least. It all started with the meeting of a lady who is such a badass in the cancer world, that Darth Vader would be scared of her. It all started with her looking  me in the eyes and saying, “What do you want? Tell me your dream for all of this.” So I blabbed all about our Neuroblastoma Research and Care Center. I did it without crying and drowning in my tears. I talked about it in a way that I made her understand why the care is just as important as the research. She grabbed my hand and said, “I promise you, we are going to make your dream, a reality. Now that I’ve met you, you’re in.” It was like I was let into the most exclusive club that ever existed. And in the cancer world, with this organization, that is absolutely the case. Follow up plans were made. It’s taken me all day to wrap my head around what this could mean. I feel like I haven’t been able to catch my breath all day and it’s not just from Poppy suffocating me. Let the evil secret cancer plans to take over the world, begin. Mawahahahahaha….

I had Dr. JoRo over to our house today. We very much needed a pow wow session. It’s been much too long. We talked a lot about Poppy, Inferno Fuckwad Bob, and of course you. Just as I was saying to her, “How am I going to survive these next two months?” A text popped up on my phone. It was my agent, Nena. “Hey, can you meet me in New York next week to meet with some publishing houses?” I just smiled at Dr. JoRo. “Here’s how I’m going to get through the next two months. By taking a little time out to go to New York.” What perfect timing. Of course I’m cutting it close with not being able to fly due to being so far along in my pregnancy, but I’m cutting it just close enough that I will make it. You know I will always say yes to New York. Especially when it involves you, which it always does.

This is all for tonight, little man. I’m mentally tapped out. G’nite. I miss you. I love you. I hope you are safe. I promise to make you proud.

xoxo

I Don’t Know What To Expect When I’m Expecting

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Ronan. My week has kind of gotten away from me. I’ve had your brother home sick 3 days this week. He’s had a sinus infection (Yay! Not cancer) which you know I am always thankful for. Your brothers get the flu, awesome! An ear infection, counting my blessings! You will never hear me complain about fevers, strep throat, throwing up, etc… Those things to me, are blessings. Having Quinn home makes me do things around here which you know I’m not a fan of. I don’t like being in our house, without you. I don’t like when I have to stay cooped up all day, not running around doing 50 million things. But staying home this week has made me realize that I am beyond wiped out, carrying a real life baby, and almost starting my 3rd trimester. WTF. It’s like I’m just now getting the memo, “Hi, you’re pregnant!” No wonder I have been feeling like crap lately. This pregnancy/growing your baby sister is hard freaking work. I got to see her on an 3-D ultra sound on Tuesday. She is so beautiful already. Her little face is all filled out. Her pump, full, lips look just like yours. She has a ton of hair already. The ultra sound tech could not get over her long, long legs. She obviously gets those from your daddy.

I saw my OBGYN as well. We went over the ultrasound and all of Poppy’s measurements which look perfect. Everything looks perfect, just the way things looked with you, too. You know that I will never stop worrying about this baby having cancer, ever. I worry about it with your brothers, too. That will never go away. Dr. Schwartz asked how I was feeling. I told her alright for the most part. Then I went down that road. One I would have never went down before if you had never died. That oh so fun place only mom’s get to go that have had a child who has died.

“Can we talk about when you can induce me. Because you know the world I live in now, and you know I am scared she’s going to die if you let me go to my due date. I am so scared of having a still birth because that’s the world I live in now and it’s all I hear about, besides cancer.”

Dr. Schwartz calmly talked about when she could induce me and told me that she would not let me go to my due date because she knows the fear I have. She told me she would keep a close eye on me, strip my membranes again, like she did with you if I wanted Poppy to come out a little early. She did not make me feel like the crazy person that I was feeling like which was so nice of her to do. She is a wonderful doctor. I left there feeling like I am somewhat in control of this even though I know I am not. I am doing the only thing I know how which is leaving this all in the hands of you. I have to trust in you that your Poppy sister is going to be alright.

I’ve had to start thinking about things like what it is going to be like, when Poppy arrives. Your Mr. Sparkly Eyes, and Poppy’s Godfather, said to me a while ago, “You know it’s going to be a circus.” I just told him in no way shape or form did I want that. I told him I wasn’t going to let it be that way and he said something like, “Well, you’d better start figuring out how to control that.” I’ve slowly been doing that. I had the talk with Stacy and Fernanda this week. I told them what I have been thinking. I don’t want anyone at the hospital, except your daddy and your brothers when the time is right and she is here, safe and sound. It took me a minute to explain all of this to them, but by the end they were both a little teary eyed and said they agreed with me and understood why. To me, this is a private time for our family. I have been so public with everything and after everything we have gone through, I want this little girl to enter this world as peacefully as possible. I don’t have a clue as to how I am going to feel, once she arrives. What if I totally freak out and lose it? I have no way of gauging my feelings because I never know how I am going to feel on a day to day basis. I do know this. I am going to need some time with her. Alone. To bond. To cry. To feel happy. To feel sad. To feel everything I know I am going to be feeling. Having a baby is emotional under normal circumstances. Throw in a traumatic death of a child on top of it and it’s a freaking party now! I am doing this to protect myself because I already know I am going to need the time. I’m not doing this to be hurtful or mean. I wish it didn’t have to be this way, but this is the decision I have made. Maybe after she gets here, my mind will change but as of now, it has not. I even had to tell your Nana, not to come. My own mother whom I love to the moon and back. That about broke my heart right then and there. I asked her to just give me some time and to come in, after we get home from the hospital. I could tell your Nana was a bit sad about this but I just said, “Mom, I don’t know how or what I am going to be feeling and I just want to be able to be, without having the pressure of having to fake like I am feeling one way, if I am not.” She just gave me a squeeze and told me, “Of course, honey. I understand.” I feel like it’s taken a long time for the 4 of us to find our rhythm again here, without you. It’s taken a lot of work to get us to go on in our day to day lives, together, as a family, with such a huge void that never goes away. We have days that we still trip, stumble and fall. It never feels totally right, but we have worked very hard, together, to get where we are today. I know Poppy is going to help us find our way a little more, too. Having her here is going to be an overwhelming mix of everything and I know, we are each going to need some time with her, just the 4 of us. Although this is a happy time for us in our lives, the sadness of not having you here, to meet your baby sister is almost at times too much for me to even fathom. I remember with all of you, I read that book, “What To Expect, When You’re Expecting.” I carried that thing around with me like it was my bible. It seemed to have all the answers. Now, going back to try to read that book is like a sick joke. They don’t have a clue as to what they can tell me about this time around. Everything is different. I have yet to find a good book about what it is like to have a baby, after going through something as traumatic as losing a child to cancer. Seems nobody wants to take on that topic. I don’t blame them. Maybe I’ll take in on in my free time. Maybe I’ll call it, “What To Expect After Losing A Child And Having Another. How About No Expectations Because Nobody Knows.”

This weekend is a busy one. The P.F. Changs Marathon is this Sunday. Dr. Sholler gets in Friday night to me my surrogate runner and I am so excited to see her and have her here. That woman humbles me like no other. I guess it was good that I had a fairly quiet week because I am going to need to find my energy for this weekend. Thank you to all of you who are running for Ronan and who have raised so much money for us. I can’t wait to see you at the finish line!

I’m tired tonight, Ronan. Did I forget to mention the fact that I know your sister is going to be extra spicy, just like you? She never slows down in my tummy and it always seems like she is having a party in there. I swear I feel her moving, kicking, punching, twirling around all day long and most of the night as well. I am so excited to meet this beautiful gift you have given us. Thank you. I know you know how much we all need her. I promise to be the best mama to her.

I love you, Ronan. I miss you. I hope you are safe. Sweet dreams.

xoxo

Not a life full of beauty but one full of beautiful moments instead

Ronan. Today was one of those days where I just could not stop crying. I cried after I dropped your brothers off at school, I cried over every single Taylor Swift song that came on the C.D. I was listening to, I cried when I ran over to the mall looking for a very specific gift which I could not find, I cried when I went over to the baby girl section and tried to look at the clothes. I had a flashback to the days of when I used to ohhhh and awwww over baby girl clothes. Today, I didn’t see anything I liked and I just wanted to rip everything off of the racks. What is wrong with me? Then I remembered. Grief. Hormones. Pregnancy. Stress. Not sleeping well. Missing you. A lot is wrong with me, actually. WTF asshole mother fucker who thought I could handle all of this. All of this is way much for one person to handle. I left the mall, upset and sent my little Mandy Bee a message. “I need your help. Call me.” I told her about the gift I needed to find. She of course made a ninja plan to help me tomorrow, go and find it. She called around to a few places. Tomorrow will be better with my sidekick in tow to help out with my crisis which is actually not a crisis at all. It felt like it today.

I got a text from your Sparkly. I went down to his office. I picked up Starbucks. A coffee for him. A water for me. We shared some fruit and nuts. We sat and caught up. Our weekly little catch up that means everything to me. “Why are your eyes so red today?” He asked. Fuck, I thought to myself. I was not going to mention to him, how I had been crying most of the day but apparently my bloodshot eyes were not cooperating. “Oh, that would just be because I’ve been crying all day.” “Why so much today? Just the usual?” he asked. “Yes. Just the usual. I just miss Ronan so much, all the time, that’s all.” He knows that. He always knows that. We talked about some other things. He was proud of the advice he gave me that I listened to. I told him how he was pretty much the only person I listened to in this life anymore. He knows that too. You know what I told him today? That my life without you is full of so much pain, sadness and hurt. That all I get now are beautiful moments in life. I don’t get a life full of beauty, only moments. Those moments mean so much to me. They are like the air I breathe and I inhale them as much as I can. This is why it is so important to me, the people we surround ourselves with and the life we choose to live. The moments of utter beauty and bliss that I only feel by being with certain people. I soak them up whenever I can, as much as I can. They help me to survive this life I live now, without your sparkly eyes, little laugh and sweet lips. A life full of moments is what I am left with, Ronan. I’m afraid this is the best it is going to get. I will be thankful for those moments. I am trying my best. But I miss the days when life was always beautiful, always joyful, always full of such love and laughter. Back when you were healthy and here. Everything was so simple and so easy. I was always so thankful for what we had. It’s hard to have the all ripped away and still look on the bright side of things. Mother fucking asshole cancer. I hate you.

We went out to dinner tonight to one of our favorite restaurants, Tarbell’s. We sat, just the 4 of us and I tried to let myself relax and enjoy our dinner. This never happens for me. My mind is always wandering to where you would be sitting, what you would be eating, how beautiful your little face would have looked lit up by the flickering of the candlelight. We talked about Poppy for a while. I told your brothers once again, how I really want to name this baby girl, Poppy. They are so not cool with it. Quinn looked at me and said, “Why do you want to name her Poppy? That is basically like naming her Wooddawg.” I had to laugh at that. I told him about the story that somebody told me about the Poppy flower.

Flanders is the name of the whole western part of Belgium. It saw some of the most concentrated and bloodiest fights at the first world war .

There was complete devastation. Buildings, roads, trees and natural life is simply disappeared. Where once there were homes and farms there was now a sea of mud, a grave for the dead where the men still live and fought.

Only one other living thing survived and that was the poppy, flowering each year with the coming of the warm weather. It brought life, hope, color and reassurance to those still fighting.

In Flanders Fields the poppies blow

Between the crosses, row on row
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

 

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie,
In Flanders Fields.
Take up our quarrel with the foe
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders Fields.
John McCrae 1915

I’ve am living in a war zone every single day. I am surviving, just like the Poppy flower. If I wasn’t sold on the name Poppy, I sure am now. Who am I kidding? I think the name is darling and it truly makes me smile. It makes me feel happy. I don’t think there is any deciding until we actually see this baby girl. Even if we name her something else, she will be called Poppy as a nickname. It is already her name, and she is not even here. Now if I can only get those brothers of yours on Team Poppy. I think you would have liked the name. I think it would have gotten the Ronan seal of approval.

This is the end of your story for tonight, baby doll . I am as always, wiped out. I’ll fall asleep quickly as I have been doing so easily lately. Only to wake up around midnight to toss and turn for the rest of the night. I kind of miss my Ambien is the devil days. The devil was kind of fun to dance with. Sometimes, I miss it. I miss you. I love you. I hope you are safe. Sweet dreams, little one.

xoxo

“From what I can see here, it looks like you are having a baby…”

Ronan. Today, was not a day I expected at all. I had an early appointment at The Fetal&Women’s Center of Arizona. I had to take your brothers because the appointment was so early. Mandy Bee offered to come and sit with them while I went back for my appointment. As we were sitting there waiting, Mandy goes, “You know you can find out the sex of the baby here, right?” I told her I wasn’t aware of that as I thought I had to wait until I saw my OBGYN in a couple more weeks. She told me how she found out at 12 weeks here with both of her boys. I am further along than that, but not much. As soon as my name was called, I got up and asked if it was o.k. if everybody came back in the room with me. The sweet lady told me it was. Your brothers sat playing on their iPads and I was on the table, getting my little belly lubed up. Pretty soon, Poppy was on the big screen. My heart started pounding. So loudly I was sure that everyone in the room was going to hear it. The lady started measuring some things. Mandy chirped up, “Can you tell the sex of the baby today?” The technician told her she indeed could. She asked me if I would like to know. I said, “Sure!” Of course you know I am so impatient when it comes to all things being pregnant. She put the little wand over my belly. I felt myself panic. Oh god. Ronan really wanted a girl. Please. I really wanted a girl. For as much as I can say all I care about is a healthy baby, the truth is, a little girl would mean so much mainly for the fact that you wanted a baby sister. The picture came on the screen. I heard her say it was a boy, before she said anything at all. “From what I can see here, it looks like you are having a baby girl.” “Really? Are you sure?” The technician told me she was about 90% sure. I could not believe my ears. I started bawling, tears falling everywhere. Mandy came over and grabbed my head and kissed the top of it. I buried my head in her shoulder trying to control myself. It was no use. Mascara and snot everywhere. I don’t think I have stopped crying, the entire day. Quinn was over the moon. Liam chirped up that there was a 10% chance that is was not a girl. So typical. So funny. I tried to call your daddy. He didn’t answer. I had Quinn call your Nana. She thought we were all lying to her. No way could it really be a girl.

I finally got your daddy on the phone. As much as I hated to tell him this on the phone because he is in Vegas, there was NO way I couldn’t tell him. “Guess what?” I said, tears still falling everywhere. Your daddy never knows what he’s going to get with me. It could have been everything from “I’m leaving for Tibet to I bought a dog.” I think he was really relieved when he heard me say, “We’re having a baby girl.” He was so happy. He said he knew it. I think deep down, I knew it too, but the confirmation was nice today. I spent the rest of the morning calling and texting our closest peeps. Fernanda. Stacy. Becca. Macy. Liz. Dr. Jo. Melissa. Gay. Tricia. Danielle. Marisa. Carolyn. Charisma. Kass. Rach. Robyn. Rissy Girl. Katie. Meg. Our Fairy RoMo. It is her birthday today. Can you believe that shit?! I found out on her birthday, which was not planned at all! This appointment just happened to fall on her birthday! Talk about another huge sign! There was one person I had not told yet. Your Sparkly. He is the last person I told today. This was not something I was going to tell him over the phone. I had to tell him I was pregnant with this baby, over the phone. I NEVER get to make him smile with happy news, because all the news I sit and share with him is usually so fucking sad or me venting. I sent him a text. “Where are you?” He responded with “In a meeting. Are you o.k.?” I said I was o.k. That I needed to see him today. “I’ll see you in 20 minutes. Come to my office.” I met him there. I was in the middle of sending an email when he came down to get me. I didn’t see him walk up, I only heard him barking some smart ass remark to me, like he always does. He sat down. I told him to hang on, that if I didn’t send this email, I would forget to do it.” He sat. I kind of crawled over to him and gave him a big hug. He laughed at that. “What’s going on? You look pretty today. You know what the baby is, don’t you.” I smiled. “Yup. It’s a baby girl.” I watched his eyes light up in a way that his often do, when he is truly happy. I was so glad I got to tell him my news in person. “I knew you were having a baby girl. I told you that. Ahhhh! You with a baby girl. Finally, someone you can do all those girly things with that you love doing. You two are going to be something else.” I laughed and talked about you a little bit. How much you wanted a baby sister. I am still trying to absorb this all. I cannot believe all the little blessings you are putting in our lives. I left your Sparkly and as I got in the car, I sent him a quick text. “You are going to make the best grand poppy ever. She is so lucky to have you.” He responded back with a simple, “I will.” I said, “I know. Thank you.”

The rest of my day, played out in a way that I don’t think I can take much more. I got a text from Carolyn saying to call her that she had some news. I, of course went to, “Oh fuck. It’s got to be something bad, because too many good things are happening lately.” I texted her back, “Is it good news or bad news?” I was expecting the bad from my friend and foundation president. She responded with, “It might just be the BEST news ever.” I called her. I did not think anything else could happen today, that would leave me speechless. I was wrong. Tears all over. As of now, I can’t talk about our news. All I can say is I cannot believe all of this. I am overwhelmed. I am floored. I cannot believe how truly hard you are working, Ronan. I have never believed in something more in my life, then you. You are making so many amazing things happen. I ended the day with Stacy at Fernanda’s house. I told her the Carolyn news. She could not believe it. A baby girl and now this?! She looked at me and said, “How are you not so overwhelmed?! Aye! Maya! You know this is all Ronan. You know that you could have been in bed for the past year, and we would have all been o.k. with that. Because that would have been totally acceptable! But you chose not to do that, and look at everything is happening.!” I started to cry. I said I knew. I knew but I also knew from day one, that I couldn’t do that. I have to make you proud, Ronan. Lying in bed for the past year, would not have made you proud. But I appreciated Fernanda saying that. I know she meant it because she is such a true friend like that. All of my friends are. I am so lucky to have them all. They stuck by me during my darkest of days. Even on my darkest of days, when nobody knew what to do with me, they stood by me. They didn’t judge me. They may have gently slapped me here and there, but they didn’t talk ill or abandon me or whisper behind my back. This is why they are still in my life. Because they never gave up on the you and me part of this. They just let me be, trusting in me to come around when I needed to come around. For that, I will forever be so thankful. For that, they will forever be my sisters. This baby girl, is going to have so many beautiful aunties. With you watching over her, with a daddy like yours, and your big brothers, too. This baby girl is going to be the most loved little baby girl in the world. Thank you, Ronan. I so badly wish you were here. More than anything. She will be a part of you and I cannot wait to meet her. Please make her extra extra spicy.

Today, was a really happy day full of never-ending tears. Tears of both happiness and sadness. Today, my tears were more happy. I’m soaking that up, because it doesn’t happen often. I miss you so much. I love you so much. I hope you are safe. Please keep this baby girl safe for me, Ronan. I know you will.

xoxo

Happiest Birthday ever to our Fairy RoMo. You are pure magic and are totally going to make the best fucking godmother ever. Poppy is so lucky. We all are. I love you.

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Grief, Pregnancy and Pies

 

Ronan. I think I told you that I tried to “prep,” with Dr. JoRo about this whole getting pregnant thing. We spent hours upon hours talking about it. Nothing could have prepared me for what it is like to be pregnant, after losing you. I am a natural born mother. I am a good mother. The fact that I still don’t really feel all giddy and excited about this baby, scares me a little bit. I still think this baby is going to die, so therefore I am trying not to get too attached to it yet. I guess I wrote a lot about having another baby when you were still here. I know we talked about it, but I don’t remember all the things you told me. A lot of my blog readers have been posting that you said you wanted a baby sister. I don’t remember that, but apparently I wrote it so it must be true. My foggy grief brain still makes a lot of my memories of you, hard to remember. Whatever this baby is, it will be loved. I know I love it, but I also know it will never take the place of you. It will never fill the empty space in my heart that feels like a gaping hole. I can’t even begin to think about a nursery. All I know is we have 3 bedrooms in our house and yours will not be turned into a nursery. I’m not sure what we will do. There is no way I can even fathom the thought of taking down your things and packing them away. I told your daddy he needs to build a new room for this baby because it’s not having yours. I cannot part with your toys, clothes, stuffed animals, books, blankets, pictures on the walls. I cannot take the things down from your room, only to fill them with something new. I cannot get rid of your bed and the Master Yoda that hangs above it. I won’t do it.

I am still pretty sick. The thought of any type of food, makes me nauseous, except pies. What in the hell is that all about? That’s all I want to eat. Peach Pie, Apple Pie, Cherry Pie… yes please. Any type of meat makes me throw up. Any type of cooking smell, makes my stomach turn. I’ve been living off of pie. So weird, but I’ll take it. You know in my obsessive exercising eating nothing world before I was pregnant, I would have never touched a pie. Bring on the pies now. I’ll enjoy them while I can:) I was productive yesterday. Of course this left me wiped out so I had to come home and take a bloody nap. I was going through some emails. I had been going back and forth with your Sparkly on some things. He had read my last blog post about how barbaric the cancer world is. He told me he thought I was being a little harsh. This led to me sending him an email back saying in no way, shape or form, was I too harsh. This led to him calling my phone. We had a little debate that  I took a stance on and refused to back down. You know how he loves to play devils advocate with me. Not because he thinks I am wrong, but I think he likes to provoke me into thinking long and hard about things from every angle, before I take such a strong stance. This is one of the things that I love most about him. The way he makes me exam everything that comes my way, with a magnifying glass. This led to me bawling on the phone. “You didn’t see everything he went through, but you saw more than most people. I won’t tell you everything they did to him, because I feel like I have to protect you. I know how much your heart is broken. Why would I want to break it anymore? Yes, it was barbaric. Yes, it is wrong. These are kids. They deserve more compassionate treatments. I lived in this world. I saw things that you don’t even know about. Someday, I will tell you.” I sobbed into the phone. “Darling. It’s o.k. You are right. You are so right. You don’t have anything to prove to me, o.k. He deserved better. You know you have my utmost respect, always. Come on, settle down. When do you leave for New York? Tell me about your trip.” I wiped away my tears and appreciated the way he tried to change the subject. We talked about New York for a bit. He always knows how to cheer me up, but I was still left a little shaken. I still feel like I have post traumatic stress syndrome over the things we went through. I will not ever forget the way you were treated like a lab rat by supposedly one of the best doctors in the world. What a fucking joke.

I have tried to be as productive as possible. I had a long board meeting last night. As always, it was good. I love our little unconventional board. I love the way we gather around our kitchen table, somebody always brings food, and we get down to business. There is a lot of business to attend to, but that never gets in the way of the love and laughter that fills our house while those girls are here. That means everything to me. We have so much going on which we are all so thankful for. We also know some changes are going to have to come, in order to start raising the serious about of money, that we want to raise. Let the strategizing, begin…

Sooooooo… New York!!! I leave soon. I have some serious business to attend to! I’m so excited. Stacy is coming with me. She needs a break and this trip is just what the doctor ordered. She will be great to have along with me to help with the business things that we are dealing with. We are also going to meet up with my friend, Scott Kennedy, from Solving Kids’ Cancer, another really great organization that is based out of New York. We will spend some time with our Fairy RoMo which is the thing I am most excited about. NYC with our Fairy RoMo is my paradise. It will be a trip packed with a lot of business, but a lot of fun as well. All fueled by everything Ronan. My favorite kind of trip. The only one’s I feel comfortable taking. As long as you are the reason I am going, to keep things moving forward with your foundation, your memory, and your spirit… I know great things will come from this trip.

A lot of you little blog readers have asked why I am calling this baby Poppy for now. It’s because when I first found out I was pregnant, it was the size of a poppy seed. I thought that name sounded cute, so that is why. It won’t be the real name for the baby. We have had those picked out for a long time. Our girl name was picked out even before Liam and Quinn were born. We think we have our boy name too. Ronan will be a part of both of their names, regardless of the sex of the baby. That is important to our family. We have all agreed on that. Anything else I need to address tonight?? Your questions are sweet. I love reading all of your comments. Thanks for writing them.

I think this is all for tonight, Ronan. I miss you so much. I watched your daddy come home from work today. I was laying in bed.(still sick and maybe a little depressed) He put his keys on our dresser, just like he always does, right in front of your urn. Watching him do this, I felt like I was sucker punched. His keys, our son, on our dresser. It is just all so wrong. You should not be sitting there. You should have been causing trouble somewhere like I know you would be doing, if you were here. I’m sorry for everything. I miss you, I love you, I hope you are safe.

xoxo

All good things are wild and free, right Ro???

4 Months feels like 4 Years. Thanks, Cancer. You’re AWESOME.

Ro. I can write tonight. I need to write tonight. It’s been a couple of days I think. I don’t know that I’ll be able to sleep tonight. It’s creeping up. The 9th of every month date. 3:30 a.m. will be here soon. I’ve been dreading it all week. Consumed by it. 4 months is almost here. What was I doing at this time, 4 months ago? Laying with you, while Fernanda sat and watched you so we could get some sleep together. I was cuddled up beside you, which was always my favorite place to be. I’ll bet you Fernanda was rubbing you, trying to sing, “Twinkle Twinkle Little Star,” but she didn’t know the words, so she had to Google them on her phone. I love that story. She watched you because she knew that I needed the rest and I wouldn’t sleep if someone wasn’t keeping their eye on you.  She knew when it was her time to go and I think she left around 2:30 a.m. She kissed us goodbye and left the two of us in the room, alone together. She knew that it was time for you to go. She knew that we needed to be alone. She knows so much. I remember watching you. Your little breaths got so shallow. I remember The Ryan House nurse standing over us and how fast my heart was beating. I looked up at her and asked if you were gone. She told me not yet, but it was going to be soon. I remember thinking how unfair it was that my heart was rapidly beating, yet yours was getting ready to stop. I kissed you all over. I told you I loved you and whispered to you, “Come on baby. Come with me. Let’s get out of this place.” I asked her to go and get your Daddy. You waited for him to come in and kiss you goodbye. Then your little heart just stopped. Just like that. I go over this night in my head, at least 10 times a day. I pray that you know how much I love you, I pray that you were not scared as I worry about that so much. I still can’t believe you are gone and that I am still here, living this life, without you.
I had a mini freak out today. Panic took over after I dropped your brothers off at school. I knew I could not go home to an empty house. I went to Starbucks and sat with my computer and went through emails and paid bills. I emailed somebody at www.spirithoods.com and told them about you and asked them if they had ever thought about donating their amazing “hoods,” to kids with Cancer. I told them how much you loved yours and how many cancer kids would comment on it, but probably couldn’t afford to buy one. I asked them to consider donating some. I actually got a response pretty quickly and I was very impressed. I’m working on them and I have a feeling they won’t let me down. Could you imagine how many smiles their Spirit Hoods would bring to the faces of kids everywhere. Hospitals are notorious for being cold. Remember how much we loved wearing ours together. You looked so cute in yours. I could have gobbled you up and am sure I tried. I miss your little face so much.

One of our favorites met me for a bit today. I was a wreck, but tried my best to remain calm. I don’t think I put on a very good show. It’s fine. I have never been one to pretend with our lovie. No reason to. I talked about how this date is hard for me every month. I tried not to cry and just listened to the words that came my way. I tried to keep an open mind and to not be angry at the fact that you are not here. Our lovie sat and told me that you are not really gone, that you are everywhere. That you will never be gone. I know this deep down, but it does not take away the pain of your physical self not being here. It does not take away the pain of not being able to hear your squeaky voice or look at your beautiful face. Our lovie asked for a smile. I refused as my smile seemed nowhere to be found today. I’ll bet you I went the whole freaking day without smiling. And I always smile for our lovie. That’s how you know it was a really, really, bad day. I know you know. I know it’s on my really bad days, that you find some way to make me feel a little happy. I found that today when I went to visit my new friend, Katie, at her boutique. Her kind heart and kick ass music playlist made me feel good. I joked with her that she must secretly have access to my iPod because I swear she always has my favorite songs playing while I am in her store. Tom Petty’s “Last Dance with Mary Jane,” was on when I was telling her that. Oh, Tom Petty…. how I love thee. And Miss Katy…. this new gorgeous girl you have put in my life, Ro. Thank you. I can tell she is going to be a big part of this new, strange, life without you. Another one of your little gifts. Thanks baby.

The rest of the day was spent in therapy. Therapy with your Daddy and than I went off to therapy alone with Sarah. I felt like my head was spinning most of the day. Than I decided that it should feel that way, as I have many hats that I am wearing right now. I am not sure if this is a good or bad thing; but it is where I’m at. You want to hear all of the hats I’m wearing? I’ll tell you.

The Maya Hat- Trying to take care of me. Whatever that means.

The Ronan Hat- Trying to connect and still trying to take care of you. It’s all I want to do.

The Mama Hat- Trying to be a good Mama to your brothers. I’m naturally a good mom, so this is not hard. But it still takes a lot more effort than it used to.

The Wife Hat- Trying to be a wife to your Daddy. Failing.

The Therapy Hat- Sarah, Dr. Rachel, Dr. Joanne, and Dr. Beth with Liam and Quinn. FUCK. That is a lot of therapy, but so necessary.

The Friend Hat- Trying. Failing. I miss my friends.

The Foundation Hat- My busy work. Trying to get everything figured out. I like this hat. It gives me HOPE that I am keeping  you alive; even though you are gone.

The Not Slitting my Wrists Hat- Want to. Everyday. Everyday I survive without doing this is a fucking miracle.

The Grieving Hat- I’m doing this. In my way, alone. Or in the presence of therapists. I’m working hard to do this. I don’t want to stuff away any pain because it will all come back to haunt me later if I do.

So baby. What do you think about all of that? That’s A LOT of stuff. Remember back in the day, when all we had to worry about was naps and grocery shopping? That life does not even seem real anymore. I feel like I’ve been living this life now, forever. What a stupid, spoiled brat I was. I’ve got a lot of making up to do for being such an ignorant human being. I’ve got a lot of work ahead of me. It’s fine, baby. I’m not scared. I know you are going to help me, therefore, I can do anything. Fuck You, Cancer. Right, Ro?

My new friend, Heather, also stopped by for a visit. She is the Queen of random, surprise drive-by’s. I just happened to be home and was so glad to see her face. We sat in the kitchen today and talked for awhile. She is another one of those peeps with such an amazing heart. She always seems to appear when I need  a bit of cheering up. When I need a little kick in the ass to remind me of how strong I am. She told me that she tells someone, at least once a day, that I am going to do for Childhood Cancer, what Lance Armstrong has done for Cancer in general. WOW. What a compliment. Talk about picking a girl up, when she is down. I took a minute to think about what she told me. I started to get overwhelmed, but a calmness washed over me. I think she is right. I think she is right because I have you to fight for and the strength you give me will help me change things, in a drastic way. Everything I used to be scared of, Ro…. no longer exists. I am here, on this earth, to change things for you. Because you know that you did not deserve to die, nor does any other child suffering from Cancer. Somebody has got to take this fucker down. Super Ro to the rescue!!!!! I know we can do this, little man. Heather, knows we can do this. She lit up like a little Christmas Tree when she was telling me this today. It was so stinking adorable. It was so beautiful. It was so you.

Oh, Ro. Nice song pick tonight as I was just getting to end this post. Seriously! That just got you the BIGGEST SMILE! I love you to the moon and back, baby. I hope you are safe. You are so right, this is absolutely not the end.

THE BRAVERY

Tell me
Come on tell me what you can
Even as you wait for death your wiser than I am
Tell me what does it mean to exist
I am not a scientist I must believe there’s more than this
And I can not accept
That everything that’s real
Is only what our eyes can see
And our hands can feel

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
Are just as real as the time we spent
You’ll always be close to me
My friend
This is not the end

I see
I can see you’re still afraid
Weathered like the silver moon, on you even fear looks good
I wish, I wish I had some words to give
But all that I can think to say
Is I’ll be with you everyday

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You’ll always be close to me
My friend
This is not the end

La la la la la
This is not the end
La la la l al la
This is not the end

I don’t care
I don’t care what you believe
As long as you are in my heart
You’re just as real as me
Maybe
Maybe even more
Someone who’s touched so many lives
can never, ever die

[chorus]
Not even earth can hold us
Not even life controls us
Not even the ground can keep us down
The memories in my head
I just realized the time we spent
You always be close to me
My friend
This is not the end

Where is Ronan?

Somehow, I am in my cozy bed at my house. I cannot get out of my bed. It feels like quicksand and even when I try to get up, it pulls me back down. My house and heart feel really empty. I hear people, but the biggest voice of all is missing. “Where is Ronan?” That is what I asked Woody. He just starts to cry. But really, where is he? Is he playing in his bedroom? Is he in the backyard? Is he causing trouble and running about the house? Is he playing Star Wars with his brothers? Then I remember. Ronan is gone.

Ronan really left a couple of days ago. His pain got really bad from his little liver failing and all we wanted was to keep him comfortable. The Ryan House was quiet but full of the people who are our family. Charisma spent the weekend, Susie came, Gay, Melissa, Stacy, Bethany, Tricia, Sarah, my mom, Mimi, Papa, Uncle Scottie, Auntie Karen, Aubrey, Marisa, Danielle…. I cannot remember who else. Mother’s Day was quiet and I stayed by Ronan’s side most of the day. I whispered a lot of things in his ear and although he was not responding much anymore, I know he could hear me. I told him all the things that filled my heart. How he was the best thing to ever happen to me, how he changed my life, how it was time to stop fighting, and just relax because I was going to take care of him forever. I sang to him, loved on him, and said our famous little thing we always said to each other, “Just you and me, baby.” As I sat next to him I prayed so hard. I asked for a few things. I asked him to please not leave me until Fernanda returned from her trip, I asked for him to please not leave me on Mother’s Day, I asked him to leave peacefully in the night, with me by his side. I begged the Heavens above to not be cruel in the way that they took him. He had enough and I wanted him to go in the most peaceful way possible. For the first time in his life, my little boy listened to everything I asked of him.

Quinn spent most of Mother’s Day curled up beside Ronan. I explained most of what was going on to him. He wanted to know why he couldn’t understand what Ronan was saying anymore and when he would start talking normally again. I told him that he was so sleepy, that he wasn’t going to be back to the way he was anymore. Quinn cried and slept most of the day away by Ronan’s side. He needed to have his time and his goodbye with him so I let him take all the time he needed. It was hard to watch my almost 8-year-old hurting so badly but it was a chapter that he needed to close in his life with Ronan. I wasn’t about to push him away. I talked to Liam about staying at The Ryan House with us or going home. He said he wanted to stay to be with Ronan and us. I told him how Ronan was not going to get better and that he needed to say his goodbyes. Little tears filled his eyes and he said he knew, but he still wanted to be with his brother. After 8 months of shipping my twins off I had decided that enough was enough and they would stay with us as long as they wanted. Fernanda had a firm talking to with me about this decision. I told her I would meet her halfway and only let Liam and Quinn see so much and how they would not be allowed to sleep in the room during the night with Ronan and myself anymore. They would have to sleep with Woody in the room across from us. She seemed happy with that outcome.

After a quiet Mother’s Day, night soon filled the air. I slipped out and let Mimi and Papa lay with Ronan and I tried to calm myself as much as possible. I was panicking, trying to come up with what I could do to save him and his little body that was failing. I asked for oxygen to be placed by him, to help with his breathing, I texted back and forth with my friend, Doriet, whom just lost her little girl. She was giving my ideas on ways to save him. I talked to my friend, Diane, who lost her little boy to this nasty disease years ago. I said things to her like what if he really didn’t want to go, but was fighting to stay alive and I was just pushing him down with all the pain medicine. She calmly talked me off the ledge and told me that the cancer had invaded his liver and there was nothing medically we could do to save him. I was still fighting for him, even though I knew he was ready to go.

I sat in the Sanctuary room with the girls for about an hour last night. Fernanda, my mom, Melissa, Sarah and Tricia. We had a lot of laughs and Sarah told us how she was getting a purple star tattoo this Thursday, on Ronan’s birthday. Before I knew it, everyone in the room had decided to go with her. This made my heart happy as the love of the people surrounding me is unbelievable. They truly are the most amazing girls alive. Around 10 p.m. it was time for me to get back to Ronan so everyone left except Fernanda who said she would stay and watch Ronan sleep so I could get some rest. I had the twins come in and kiss Ronan goodnight and I curled up beside him. I whispered little things in his ear and sang to him. I fell asleep as I could relax a little knowing Fernanda’s watchful eyes were on him. His breathing was becoming softer, his little feet were becoming so cold. Fernanda sang to him and rubbed him. I fell in and out of sleep. She left the room about 3 a.m. and the nurse taking care of Ronan patted me around 3:20 a.m. Ronan was ready to leave. I said to her, “Is he gone?” She replied, “Almost.” I grabbed on to my baby boy, whispered in his ear that I loved him, but it was time to go so he needed to come with me. I kept saying, “Come with me, Ronan. Let’s get out of here.” The nurse went to get Woody and when he got to the room, he kissed Ronan goodbye and that was that. His little heart just stopped.

Somebody came in asking if she could bathe Ronan with warm water and if we wanted his clothes changed. Woody left the room to make phone calls and I asked if I could please give him his bath. She said of course and brought me everything I needed. I stripped him down and washed his little body. I remember looking up at her and saying how no mother should have to do this. She replied, “You’re right. You are very brave.” I remember thinking to myself how I couldn’t believe I was giving my dead child a bath. It was so weird, yet so peaceful. I put on his favorite red Small Paul monkey pants, his Star Wars shirt and little Ralph Lauren socks. I kissed his cold little lips a dozen times and kept thinking I couldn’t believe I wasn’t ever going to be able to kiss them again. Woody came into the room and we sat I just stared at our son. We cried, held each other while looking down at his little body. I kept feeling him and kept telling Woody he was so stiff. It was all surreal to say the least; but I felt like Ronan was right there with me. Just because the shell of his body was gone, his spirit was still in the room. It has been with me the entire day which is maybe why I feel so at peace.

Leaving the room was the hardest part. Woody said his friend that he went to high school with was waiting outside as they were ready to take Ronan away. I told him that I wasn’t leaving him and he grabbed on to my arms and tried to pull me away. I cried that I promised I’d never leave him and it took awhile for Woody to convince me that he was already gone. I went and kissed his toes, lips, and pinky fingers one last time. I walked out of that room and went straight into the arms of Woody’s friend, Ardra, who runs the mortuary. I held onto her and told her to take good care of my baby boy and not to leave him. She cried with me and promised she would. I walked away before I saw them carry out his little body. I went into a room where my mom, Kay, Charlie, Scottie, and Auntie Karen waited for Woody and I. We sat for a while and no words were said as they were not needed. Woody and his family went to pack up our rooms and I sat with my mom and Karen. We talked quietly about what had just happened. We talked about Ronan and his life and how he had inspired so many people. That little boy taught me more in his almost 4 years of his life than anybody I have ever known. He was the proudest, most beautiful child that has ever touched this earth.

After Ronan’s body left The Ryan House, we had to go and wake up the twins. I quietly tapped Liam and told him it was time to go home. He was confused and I did my best to explain things to him. Woody picked him up and carried him out of the house. I snuggled with Quinn a bit and woke him up and said the same thing. He wanted to know if Ronan was coming with us. I explained to him that Ronan would not be with us anymore. He cried and it took awhile to get him out of the bed. He said he needed more time and I gave it to him. I had Ronan’s “Gigi,” in my arms and I gave it to Quinn and told him he could have it now. He wrapped it around his shoulders and I told him he could go into the room where Ronan had been and kiss his pillow. He did so and also laid down on the bed where Ronan had been hours earlier. I let him take his time and Woody then came and carried Quinn out into the car. The four of us drove home together as the sun rose. Ronan’s car seat was no longer in my car and I sat with Quinn on my lap and watched as Liam sat in the back as the tears poured down his little cheeks. We talked a little bit on the way home about Ronan and how he was no longer hurting and how peacefully he went to sleep. We all stumbled in our house and I insisted that we all lay down together and get some sleep. Liam tried to go to his room, to be alone but I told him that was not happening as we all needed to be together because we were all hurting. He listened and snuggled up between Quinn and Woody. I took some sleeping medicine and passed out for most of the day.

I sent my Mr. Sparkly Eyes a text and told him how I could not get out of bed. I asked him how I was ever supposed to face the world again as I never went anywhere without Ro, my little partner in crime. I don’t know the answer to this but I know Ronan will help me in everything that I do. He will guide me for the rest of his life just like he did his entire existence. Nothing I do will be without Ronan’s help and the love that we have for each other. It is eternal.

I know I don’t want to end this story. I want it to go on forever. I want Ronan to never stop inspiring you all just because he is gone. I want his name and our love story to live on forever. I want to keep writing to all of you. I hope that is o.k. I’m not sure what I will write about as that child was my life. But just because he is not here, does not mean our story has to end. He is with me and will continue to fill me with his love everyday. His love alone will keep me going and strong. I will not crumble up and die because he is not here. I will not let him down and I promise to make him so proud of me as I know he is watching everything that I do. Those eyes will forever be burned into my soul, the smell of his sweet skin, the touch of his perfectly plump lips and his little giggle will never be forgotten. My twins will be better boys because of him, my marriage will be stronger, and I will never take a second of my life for granted again. I would give anything to have him back and I don’t know if it has even hit me that he is really gone. I find peace in knowing that he is no longer hurting but cannot deny that my heart is broken beyond repair. All I want is my child back. My healthy child back before all of this.

I feel very angry and let down by a lot of people; but mainly by medicine and the doctors of the world who have not figured out this nasty disease. Mostly life in general as I have learned the hardest way how cruel it can be. Watching my child die from Neuroblastoma t was the most horrific experience of my life and nobody should have to go through that; especially in this day and age. I made a promise at the beginning of all of this to help find a cure and now I am more determined than ever. A cure begins with awareness and funding so I am going to work for the rest of my life on that part of all of this. All in the name and honor of my Ronan Sean Thompson. The brightest star in the sky.

I cannot thank all of my friends and family enough for their love and support through all of this. I would not be in such a peaceful place without them. I have no doubt that Ronan’s journey is not over… it will just come in a different form now. I cannot thank all of you who have been following me this blog and spreading the word about Ronan. We love you all so much. If you see me, please don’t be afraid to come up and tell me hello and hug me. Please don’t be afraid to tell me how sorry you are because of the pain you know we are all in. But please, don’t tell me things like God has a bigger plan for Ronan, how he belongs in heaven, how he is happy with God now…… because all of those things just piss me off. And I will punch you. I will never come to peace with any of those fucking saying and unless you have just walked through my exact shoes, you have no right to say those things. I understand if it is how you will make sense of all of this but to me, you can’t make sense out of nonsense and that is exactly what all of this is. Complete and total nonsense. This will never make sense to me as I know our family did not deserve any of this pain; especially not Ronan.

That is all for tonight my loves. Goodnight to my sweetest baby boy; Ronan Sean. My little seal, my little monkey, my little everything. I love you to the moon and back a million times over.

xoxo



The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

One foot in front of the other

Another day done. Ronan slept in for NYC time… 10:00 a.m. which was nice as we were all tired. He woke up a little grumpy, still complaining of pain. I tried my best to entertain him while Woody got some work done around here and he soon left to go back to RMH to get some quiet work done. For being stuck in a hospital, the days sure do fly by and I can’t even keep track of what we have done. We don’t really watch movies or T.V…..so I’m not sure where the time goes. We listen to music a lot and do a lot of playing. I do my best to make sure Ronan is as happy as can be; even though he asks for Liam and Quinn a dozen times a day. We did Ronan’s 4th day of chemo, and 5th day of radiation. So far, he’s done really well with the chemo. No more vomiting. We went down to RT (Radiation) tonight around our usual time, 5:00. I had Ronan waiting in his little wheelchair when one of the RT guys walked by and did a double take of Ronan. He came over and went on and on about how he is the most beautiful boy he has ever seen, how he has movie star looks and the most unbelievable eyes. I just nodded my head and told him I knew. He asked what Ronan’s name was and introduced himself as Kerry. He was really sweet and wouldn’t stop talking about Ronan’s piercing “Husky dog eyes”. It was very cute… you don’t usually hear a twenty something guy go on and on about how beautiful a boy is. Ronan can melt anyone’s heart and it was blatantly obvious from today.

Ronan knows the drill now. He knows he is to be perfectly still as he down still as gets his radiation. Our friends down in radiation had “The Killers,” playing on the stereo system for Ronan as they know he loves that band. I covered him up with GiGi,(his blanket) and he clutched his pistol gun in the other hand and I left the room. It only took a few minutes again and I watched my brave boy from the screen and talked to him over the speaker system. We were soon done and Ronan was very tired. He sat in my lap and our escort wheeled us back up to our room. I somehow talked him into a sponge bath, but only if I would put his Star Wars guys in the water too. He stood up and I got a tub, filled it with warm water and bathed him and brushed his teeth. I also scrubbed his Star Wars guys for him to make him happy. He is sleeping now and I am waiting for Woody to return so I can go on my run. It’s going to be a dark one tonight…. sorry Little M. I’ve got to go run tonight… my mind needs it.

Woody returned to Sloan around 8:00 NYC time. Ronan was asleep so I quickly snuck out. I went to the RMH, changed my clothes, and headed out. I was on the phone with my sweet Niki right before I was getting ready for my run. I got the usual, ” You be careful… I won’t even run in Central Park at night.” I gave her my nobody is going to mess with me answer and she laughed and said she it would probably actually be really good for me to fight off someone, so I could blow off some steam. I told her would just pretend like my slayers (as Marisa likes to call them) were cancer, and kick their asses. We had a good laugh about that one together. My new loop from the RMH and back ended up begin almost 9 miles. Perfection. The perfect run, perfect mileage, perfect night with no Slayers in sight, Marisa. It was refreshing, grueling, and just what I needed. I love running in this city and I love that I now have a set path and I know the distance. Gotta love GPS on the iPhone. I ran a fast 8 and a half-minute mile…. got back to the RMH, showered, packed a bag and grabbed some soup at Delizia’s, my one meal of the day. I have decided that I can seriously live off of my coconut water, coffee, Delizia’s minestrone soup, coke and chocolate. So ridiculous but whatever….. it works for me and I can actually keep that down without throwing up…. knock on wood.

I almost made it through the day without crying. Almost. I was sitting on the ground, rubbing Ronan who is now complaining of his legs hurting…. so I sit and massage him most of the day. Our senior in high school roommate started vomiting and we could of course hear her; which is awful. That threw me over the edge and I started bawling. Ronan watched me and asked why I was sad. I told him because the girl next door was sick to her stomach and it makes me sad. I quickly pulled it together and helped get new linens for her. Stupid cancer.

O.k. my dears… it is 12:30 at night here. My body is aching and my mind is officially done for the day. Sweetest dreams to you all.

Ro baby takes Philidelphia and New York City

I am so happy to tell you tonight that I haven’t updated things in a few days due to a very busy, but fun weekend. It’s the first time that I can remember since before Ronan was diagnosed with cancer, that things around here felt very normal. We spent the weekend hanging out at home, enjoying family time. Woody and I snuck out for a date on Saturday night while Auntie Karen and Olivia watched the boys.’ We had an amazing dinner at Tarbell’s even though I ended up crying a bit in the middle of a conversation between Woody and myself. I tried my hardest to just be a normal couple on a Saturday night…. but the harder I try, the harder things become. We will never be that normal couple again. It’s just not in the cards for us anymore. Everything has changed; nothing is the same.  Not even a Saturday night date will be like the old days. Maybe it is for the better…. because I am so much more aware of the reality of the world around me. But it still stings. I now sit in restaurants and watch the people around me and wonder if they have the sadness in their lives that I do, but in a different form. Or maybe they are lucky enough to be blissfully happy. I know that the world is full of sadness, but as I sat at dinner with Woody, the feeling of complete aloneness washed over me. I sat and thought things like, I bet their baby doesn’t have cancer, or I bet their Grandbabies are totally healthy….Then the guilt washes over me for having these thoughts…. I wouldn’t wish this on my worst enemy. I was once blissfully happy but also blinded by ignorance. Now, I truly know the meaning of ignorance is bliss. What a bullshit way to find that out.

On Sunday I met Fernanda at Hava Java for some coffee. I love that when I was on the phone with Tricia right before Fernanda picked me up and I told Trish how I was going for coffee, Trish goes, “What part of the world is Fernanda saving today?” So adorable. I told her she was saving me:) We sat and had our coffee and she helped me write down all of my questions for the doctors at Chop. We talked about my upcoming week, but the thing I enjoyed most was listening to my new friend talk about the things in her world. Her kids, her funny family stories, the things she’s done in her life. One of the biggest gifts of all of this has been getting to know this beautiful woman. Through this crises, comes the gift of her. I will be thankful for the rest of my life for all the beauty that has shown it’s colors during the darkest time. Fernanda is one of the most colorful things that I have ever seen in my life. I so need color now. This black and white stuff is getting a bit dull and scary. Life is not black and white, Ronan is not black and white, and I wish the doctors in this world would start thinking this way too. I’m about to take all the crayons out of Ronan’s Crayola box and scribble up and down all of their stupid papers and statistics. They do not know my Ro baby.

Woody and I also spent the weekend figuring out our plan for the week. Since Ronan’s ANC counts don’t seem to be dropping and he looks great, we decided to take him out to Philadelphia to Chop. Ro and I are flying out tomorrow morning on a Corporate Angels flight. Woody has a court appearance he cannot miss, so he will be flying out tomorrow late afternoon. We are meeting Dr. Mosse on Wednesday to go over our list of questions with her and to just get another opinion and feel for the place. We decided since we were going to be in Philly, that on Wednesday we would take the train to New York and meet with Dr. Kusher at Sloan Kettering on Thursday. We will fly home Thursday night. It’s going to be a whirlwind of a trip, but one that we both feel is necessary. We have to be prepared as much as possible for what we have ahead of us. Arming ourselves with as much knowledge as possible will only help us decide on what path to take for Ronan. I think we both know in our hearts; but we are keeping our minds as open as possible.

Today, Ronan and I headed to the clinic to have his levels checked. Dr. Eshun thought he looked great and saw no need to transfuse him. Ronan was so excited about not having to get blood, he practically skipped out of the clinic office and to our car. We went home and played out in our backyard and got everything ready for our trip. Liam and Quinn came home soon after and their cousins, Luke and Lily came over to play for a couple of hours. It’s always a treat to have them spend time with us. Ronan especially loves it. It was a good way to get him ready for his upcoming travels. He is a little sad about having to leave Liam and Quinn behind once again. He’s not the only one. I wish they could come on these trips with us but I understand how important stability is in their lives right now. I also understand how important it is to be able to just focus on Ronan, the doctors and get the job done. I cannot wait to get back home to them already though. So glad we will have the weekend together. Ronan is set to start his 8th cycle of Chemo March 14th. Hopefully we will stay hospital free until then. It would be so nice to continue to be at home. There is no place he would rather be.

Woody said to me tonight, “Aren’t these supposed to be the happiest times of our lives?” How do you even respond to that?? I just nodded my head and gave him the best smile I could, which wasn’t much. Fucking cancer. Thanks for robbing all of us of this precious time in life. I HATE YOU.

Hope you all have been well. Wishing you a night full of sweet dreams. Happy Birthday to my Little M today too. I hope you go my message and are having a wonderful time in NYC. I miss you so much and can’t wait to celebrate you when we both get back from our trip and things settle down as much as possible. I love you, Marisa <3

Safe travels for us tomorrow! It’s going to be a very busy next few days!! G’nite friends!!

xoxo


A warning sign
I missed the good part then I realized
I started looking and the bubble burst
I started looking for excuses

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you, so

A warning sign
You came back to haunt me and I realized
That you were an island and I passed you by
And you were an island to discover

Come on in
I’ve gotta tell you what a state I’m in
I’ve gotta tell you in my loudest tones
That I started looking for a warning sign

When the truth is, I miss you
Yeah the truth is, that I miss you so
And I’m tired I should not have let you go

Ooooooooooooooooo

So I crawl back into your open arms
Yes I crawl back into your open arms
And I crawl back into your open arms
Yes I crawl back into your open arms