The eagle has landed!! Or maybe just Maya has landed in Austin, Texas.

 

Ronan. I had our white party, yesterday. I had it solo and it really wasn’t much of a party at all. But I wore all white and just did my normal, everyday stuff. I didn’t bring it up to your brothers. They don’t need to know every single one of these dates, all in a row, the way I do. I will protect them from what I can and the date that we had your service last year, didn’t seem like a day I needed to remind them of. They have been reminded of enough lately. My party didn’t last long, my party wasn’t very fun. I don’t think P Diddy, would have enjoyed it. I am glad he didn’t come. I spent the majority of yesterday, unpacking all of our suitcases and doing about 20 loads of laundry. I am anal like that. I needed everything to be put away/clean so I could feel o.k. about turning right around to hop on another flight. I am in route to Austin, Texas as we speak, but due to US Airways sucking balls, our flight has been massively delayed.

I am heading out to Austin, Texas to go to the Dell Children’s Medical Center for the 2012 NMTRC Symposium. I am going to listen to them talk about the latest in genomics-based personalized treatments for neuroblastoma in children. You see, when you believe in something or someone as much as I do, you will do whatever it takes to support them and learn as much as you can, about what they are doing. Even if that means surviving the worst month of the year, being beat down, tired, numb, sad and alone; but still continuing to move forward. I believe in Dr. Giselle Sholler this much. I believe in her, so much that I will do whatever it takes to help support her in whatever way I can. As of now, going to this conference is my way of saying thank you to her. For all that she is doing. It is my way of supporting her and it is a great way to learn the everything I possibly can, about what she is doing. Yes, I am tired. Yes, I just had a brutal past week. Yes, I would like to just crawl in my bed and not come out for a while. Yes, I probably need a break. But now is not the time for this. Right now, I have work to do. Right now, there is no stopping. I am too angry at this disease to stop and come up for air. I will eventually, but not now. Dr. JoRo texted me to see how I was doing. I told her I was in the zone. She told me she was worried. That my “zone,” makes her nervous. That she feels like I just got though the dates of hell, and now here I am, off again to do more, more, and more. I told her I knew. That I was nervous too. I told her I expected to have a breakdown next week. But not this week. This week I have some stuff to take care of. This week I can power through because I am strong even when I am not. I am doing this week, because this is what comes along with still taking care of you. I say this all the time, but this is my way of taking care of you. I will always put you, before myself. Always.

So yesterday, I played catch up all day. I got everything in the house, taken care of which in turn will lessen my anxiety and it will be nice not to come home to a shit storm of suitcases/dirty clothes, everywhere. I could not handle that so I powered through the day. I slept last night, off and on. No Ambien needed. I think I mostly tossed and turned. I sent some emails at some very vampire times so this tells me I really did not sleep at all. Today was more of the same stuff. I finished packing. I ran to Safeway to get our Hallie a little something for her birthday. I dropped it off at Green Cleaners for her and got to run in and give my friend a hug. She is my friend and she loved you. I think I made her day. I hope so, because she often makes mine. Whenever I’m having a bad day, I will run by to see Hallie because her mouth and her sass always makes me laugh. Laugher to me, is priceless. Not many things make me laugh anymore. She always does. I hope she had a nice birthday. She deserves to.

I am finally here. I am tired. I spent much of the flight with my head buried in your blanket, crying. Tonight, I am beating myself up. Tonight, I am filled with we should have done this. Tonight I am filled with, why didn’t we do that? Tonight, the only voice I hear in my head is I didn’t do enough to save you. In my irrational mind, if that were true, you would still be here. I know this is not logical. I know this an impossible standard to live with. I see how absurd this all sounds. It’s not a fun place to be, but this is where I am, as of tonight. I hope to wake up tomorrow, wearing a new set of glasses that seem less foggy and hard to see out of. Sometimes, things get really blurry and foggy with these glasses of regret and shame on. Maybe I just need some sleep.

Alright little one. I love you. I miss you. I hope you are safe. Sweet dreams. I love you to the moon and back.

xoxo

Because golfing in a TuTu is sometimes necessary

Ronan. Hi baby. I missed you today so much that at times I felt that I couldn’t breathe. I woke up early for not having slept well the night before, but I was ready to start the day anyway. I was tired, but my mind refused to be still. I got up, showered, dressed, and ran out the door. I got a few errands done, ran into the grocery store and came home to make breakfast for your brothers and cousins. We all sat around the table and ate, laughed and talked. It was hard for me to sit there without you, but I did it because it was important to your brothers. It didn’t feel good. Does that make me a bad mama? I don’t know. It would seem like simple things like this would make me happy. They should, right?? Maybe someday, but not now. Your brothers ate huge breakfast which was important as they had their first basketball game at The Village to play. I fed them, they got ready and we all headed out the door. I had to walk through those doors without you today and it was gut wrenching. You used to love to go watch your brothers basketball games. You were their little mascot. I tried to stay focused on watching your brothers, but I was so distracted by you not being there. And there were sooooo many kids everywhere. I could not stop the screaming from inside my head as to why you were not with us. Why did you have to die from Cancer? All of these healthy kids, were running about. I just kept thinking, they have NO idea how lucky they are. I kept wondering if their parents did? If their parents knew how lucky they were to have healthy, happy, carefree, kids. Or is it something that was more of a right, not a privilege to them? I don’t know, but I really I do know. I know how lucky parents are who have healthy kids. How a day should never pass without being grateful for this gift. I know this because of the sickness you fought, for the life we lived in the hospital, and for your death. Your death that is now teaching thousands of people how precious life really is. It seems so unfair that you had to be the one to teach us all this lesson. Why couldn’t it have been me? I would have gladly died in your place. I wish this everyday.

Ro baby. I think I started this a few days ago. Everything is blurry again. The days continue to drag on and on. We’ve kept busy. Your brothers amaze me everyday. You always hear how kids are so resilient, but now I am witnessing it first hand. Both of your brothers are thriving in school. Doing so well and they are such good boys. They are coming home with good grades, both are getting praises from their teachers, and they seem happy. I am glad they won’t know the pain of losing you in the way that I do. I would never want them to feel even a quarter of the way that I do. I am trying really hard to balance their therapy, while making sure they feel somewhat normal. This means play dates, sleep overs, the same chores, responsibilities, and getting them back into a routine of structure and love. I know they hurt, I know they miss you, I know they are sad and confused…. but it is not consuming them. They were really well-adjusted boys before all of this, and I know that is a big part of why they actually seem like they are going to be o.k. It is all I can hope for at this point. I don’t want their lives to be ruined over losing you. I want them to learn from this and understand how precious life really is. They get it. They got it before all of this which seems so unfair. FUCK. I hate trying to justify any of this, because they were already going to turn out to be amazing men anyway. So what. Now they get to become better boys because you died? It’s not right, Ro. I sometimes have to try to rationalize this in any way I can, just to keep me moving forward. The truth is, they should not have to be learning this lesson. There is no rationalizing this because it is just fucked up. Plain and simple.

This weekend was busy. I don’t know what we filled it with, but it was filled. Basketball game, Football on T.V., Inferno Hiking, things around the house. I went golfing on Saturday night. Glow in the dark golfing on a lit up course. If there is one thing I’ve always known about life, it’s that people take it way too seriously. And when you become a “grown up,” it is easy to get lost in the shuffle of responsibilities. I’ve always had a pretty good idea about how to balance both things… silliness and seriousness. I’m a big kid at heart, which is probably why I relate so well to babies/toddlers/children/ and teen-agers. I like fun. I used to be so fun. I used to love to live, which is why Saturday night was so necessary. I saw something in Phoenix Magazine about a glow in the dark golf tournament that was being held. Um… yes please! I called to register, but all the slots were full. I got a call Saturday morning, telling me that two spots had opened up and the man asked if I wanted them. I said, of course. I called up Liz to see if she wanted to go with me as I have been missing her since our summer in Coronado ended. We both have been so busy, so it seemed like the perfect excuse to spend some time with her. Liz does not golf, but she was game anyway. She told me her friend, Heather, wanted to come as well. I met Heather over the summer and she is a doll. I told her to bring her. I told Liz to be prepared as I had somehow gotten it into my head that it was necessary to go glow in the dark golfing, in a TuTu. Why the heck not? My lovely, Katie, just happens to carry TuTu’s at her store. She took a pink and a purple one, off her mannequins for me. I came home, threw on the purple one, for you of course, a black shirt and black flats. Liz about died when I opened the door and I think she may have called me a dork. I told her that she was wearing one too, so she needed to be quiet. Golfing in a TuTu. I cannot believe somebody hasn’t thought of this before. It should be mandatory. It was so much fun and made our golfing night, even better. I did this for you. And for me. Because my life is so sad now, but being in a TuTu for a few hours while whacking a golf ball on a dark glow in the dark course, made me smile and think of you and how much you would have loved being with me. I totally want to put together a golf tournament for you with this idea. All the ladies in TuTu’s just for you. I’ll make the men all wear fake mustaches or something silly like that. The lesson being, life can be hard and for some, harder than others……. but you should always remember how to have fun, even if it is in the form of acting like an 8-year-old child. Adults often forget how to do this as the age thing seems to cripple them. Age is just a number, nothing more. I promise to always try to channel my inner child for you by doing silly things like golfing in a TuTu. It makes me a better mama. And the fact that you had your childhood stolen from you makes me want to channel my inner child that much more. To make up for the life that you never fully got to live. I’m sorry, Ro.

I spent today, keeping busy. I actually got my booty up out of bed at 5 a.m. and went to boot camp. I had lunch with Tammy yesterday and told her if I got some decent sleep, that I would come to her class this morning. I got a good 5 hours in, which I seem to do just fine on. I went to her class and I am so glad I did. I miss it so much. I’m paying the price already though as I am so sore, I can hardly walk.

I’m having a really hard time being home during the day, alone. It is so quiet without you. Too quiet. I have been going to public places when I have emails to get through, bills to open, checks to write, etc….. Today, I went to my Safeway and sat in the Starbucks with my headphones blaring music, while I pounded out email after email. I had two really sweet women come up who recognized me to say Hello and how sorry they were. I cried talking to them both. I couldn’t help it as I was an emotional mess pretty much the entire day. I was glad they said hello as it is always nice to know how many people are thinking about you. I finished up my things and headed off to get a few more things done. Lots of “shit list,” things checked off today. Yay me.

I spent a lot of the day, doing things for others today. Things that should feel really good to me, but they don’t. As I was walking out of Staples, and to my car, I felt like the world was going to swallow me whole. I started bawling. Choking on my tears and feeling like I was surly going to suffocate to death. I was engulfed in a world of loneliness, sadness, pain, and just plain missing my little partner in crime. I somehow made it to my car, but it took me a while to calm down. I drove home but cried the whole way there. Once I got home, I tried to be productive. I am always trying to avoid the silence. I talked to Fernanda and she let me vent/sob to her. I told her over and over that I could not believe you are gone. I asked her why you because I will never understand. I told her how I had spent my day, doing all of these great things, like helping others which is what I know I am meant to do…. but it is never going to fill the huge hole in my heart. She said something like the pain will never go away, but I will learn to live with it. I told her what a shitty way to live. Because it is. To live in constant agony and pain; and knowing that I will never feel better, but this is my new normal. FUCK YOU WORLD. I hate this life. I hate this life without you and I just want you back. But you are not coming back so I am just supposed to continue on, fighting for any ounce of happiness that comes my way once in a blue moon? I want to help others, and I hope someday I can feel something from it. But as of now, it just feels like a fire that lives inside of me. It burns all day long and I feel like it is coming from you. You are the one pushing me forward, to make a difference. You are the one, pushing me to do as many things as I can to help where I am needed, to continue on to fight for all of the kids who are affected by cancer. There are so many out there, Ro. So many sweet babies who are going through this. I had no idea….. I feel like such a fool. My happiness was so simple before and I really did know how lucky we were. I thanked God for my life everyday. I was not ungrateful, mean, or a bad person. I was a good person before all of this but now I have to become better??? I know I do. I know I do for you. As much as I hate all of this pain, I know I still have you to answer to, Ro. You want things in this world to change. I have to be the one to help change them for you, because I want you to be proud of me. I promise to make you proud of me.

I’ve got to go now little one. It’s been a hard day. An awful day of feeling like I am buried alive and drowning all at the same time. I miss you. I love you to the moon and back and hope you are safe. G’nite my little “not spicy,” monkey boy. Sweet dreams, Ro.

xoxo

P.S. This makes me sick to my stomach. Did you know that pediatric cancer is the #1 disease killer in the US? Pediatric cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, pediatric cancer research gets the least financial funding. Please help spread this info and save our babies!!!

I am starting a new trend. I think every girl should golf in a mother fucking TuTu. It rules. Go see Katie@Garage. She has the BEST ones.

Inferno Fuckwad Bob

Ro baby. So, remember how I told you I was going to stop cold turkey, taking my Zoloft…. mainly because everyone told me not to. That I needed to slowly come off from it. I didn’t listen. I stopped taking it over two weeks ago. I did it, all by myself and I’m still here. I didn’t have any side effects. I just feel better. One less medication that I am on. I do not want to live my life with the help of Zoloft. Not that there is anything wrong with it. I just want to find another way to get through this pain and I don’t want any help from a pill. I tried this last night with the Ristoral I am taking to help me sleep. I tried not to take it. It was awful. I tossed and turned for a few hours, while lying next to your Daddy. I dozed off, here and there but the screaming in my head was too much to take. The dreams were too mean and vivid. I got up, around 12:30, and paced the house; looking for you. I took 2 of my sleepy meds and ate a bowl of cereal. I had not eaten all day long. I crawled up into Liam’s top bunk bed and fell asleep until 7 a.m. I woke up groggy, and felt hung over. Your Daddy looked worried as he could see the glazed over look in my eyes. He decided to take Liam and Quinn to school for me. It was a good thing, because I mentally was a wreck today. I don’t remember what happened next, but before I knew it, I was laying my head on the kitchen table, sobbing into your blanket, with your Urn in front of me. I went and grabbed the locket that Macy got me, that does not have a picture of you in it yet. I got out the scissors and cut open the plastic holder that keeps your ashes sealed. I found some glue, rubbed it on the inside of the locket, took my hands and picked up some of your ashes. I felt them for the first time. I kissed them and I took a little of them and sprinkled them to the inside of the locket filled with glue. Fernanda called. I ignored her phone call. I sat and sobbed with you instead. She called, again, about 20 minutes later. I picked up this time. “What are you doing?” she said. I couldn’t talk, so I didn’t say anything; I just sat and cried into the phone. “Where are you?!” she asked in her beautiful English, Spanish, and Italian accent. “Home,” I said. She said,”I’ll be there in 2 minutes.” And she was. She pulled up and I opened up the door, my face black from my mascara. I really need to freaking invest in some waterproof mascara at this point in my life. She grabbed me and let me cry all over her all white blouse. My angel.

We sat at the table for a bit. I told her what I had just done with some of your ashes. I said to her, what if these had been your beautiful blue eyes. She told me they were not. Your eyes, left long before you were cremated. I agree. She put her head down on the table with me and we sat and cried and talked. I told her I needed to get coffee if I was going to function at all today. We ran to Safeway and sat on the couch at the Starbucks. A woman came and sat down next to us. She overheard some of our conversation. We started talking to her. Turns out, she had a 2-year-old who had died, and she had lost a baby from a miscarriage as well. She told me how lucky I was to have a friend, like Fernanda… as she had nobody. All I wanted to do was take this woman home and love her. She does not have a Liam and Quinn to keep her going. She does not have a reason to get up in the morning. But she has found one…. whatever it may be. That is true strength. I told her about your website, and I gave her one of the MISS Foundation cards. I told her about them. She said she didn’t even know something like that existed. I told her to call them. I hope she will. I wish I could have done more for this woman today; but I did all I could do.

The rest of the day was a blur. Quinn went to Dr. Beth. He is so needing her now. As well as your brothers are doing in school…. which from what I can tell, they are excelling….. I know this outside help is so important for them now. I know in the long run, it will make a difference. We are choosing to face this head on, not bury it down in the ground. Their therapy is a big part of this so I plan on continuing it for as long as we need…. even if it is for the rest of their lives. I hope it won’t be, as I want them to be able to go on and live normal, happy lives. But to get them to that point, this is so necessary.

I went to see Dr. Joanne. It was a really long, intense session. I ended up being able to write out that grief worksheet before I saw her. I wrote it out this morning, in a really random, public place. I have struggled with the finding the words to fill it out all week. I have carried that worksheet all over with me, and when I sat with it today, the words to the questions just came pouring out. It took me only a few minutes to answer the 5 or 6 questions. One of the things I had to answer was, if I had to Name my grief; him/her, I’d call him/her…… ??? What???? I had to come up with a name for my grief. The name, Inferno Fuckwad Bob, just flew out of my head. That is what I wrote. I named my grief, INFERNO FUCKWAD BOB. I have no idea where in the world this name came from, but it is perfect. Dr. J sat with my sheet of paper and asked if I thought I could read it out loud to her. I told her No. She asked if she could read it out loud. I said yes. So she did. I think I cried while she was reading my words. I think I bawled pretty much the entire time I sat and talked with her today. When she got to the name of your grief part, hearing her say that out loud, made me laugh. She giggled a bit too, and told me she had heard some interesting names for Grief in her time, but this may have been the most interesting. It was at that point, that I knew that there was no other name in the world for my pain, my hurt, my grief. Inferno Fuckwad Bob, it is. I hope he is not always so present in my life, but for now he is; and I cannot ignore him.

After our session, I came home, threw on my hiking clothes and drove to The Inferno. I ran my butt off up the mountain. I saw Mountain Mike again, which was strange because I was there much later in the day than I usually am. He was coming down as I was running up. I took out my headphones to say Hello. We chatted for a minute, then he said for me to keep going as he didn’t want to keep me. As I got to the top of the mountain, I took my time to talk to you. I didn’t see the Eagles today, but that was o.k. I did some stretching and breathing. I put my headphones on full blast and got ready to run as fast as I could down the mountain. Just as I was getting ready to run, I got this text from Dr. Joanne.

Goosebumps ran down my spine. I had gone into the bathroom, after I left her office. I just needed to wipe down my face and dry my eyes. I was in the bathroom for maybe 30 seconds. I am always intentionally leaving your bracelets places…. on my hikes, random restaurants, grocery stores, etc….. It never even crossed my mind to leave one in the bathroom of her office building today. But she found one, in the sink. I asked her if it was the naughty or nice version. It was the naughty. I thought I was totally out of all of those, but apparently one found it’s way to Dr. Joanne. So random. So something you would do. I have hesitated about giving her one…. just not wanting to overstep my boundaries as I know not everyone is comfortable with the F word. I guess you had other ideas and know she is deserving of wearing it. Because she is a badass:) I am so glad, baby. I thought so too, but you made it happen. Thank you for that and for making me smile so big after seeing that text from Dr. J.

As soon as I turned my headphones up as loud as they would go, and starting running as fast as my legs could possibly carry me, without falling on my face, another little thing happened. I have decided one of the ways you are communicating with me, is through music. I had my iPod blaring, and you had decided what my playlist was going to be. From the time I started running, until I stopped at my car, these are the songs that came on, in this order. Pearl Jam, Given to Fly. Coldplay, Fix You. Band of Horses, No One’s Gonna Love You, and it ended with Katy Perry, Firework. I mean really, Ro. That was so sweet of you. It made me smile, cry, smile, laugh and blow kisses up into the sky. I love you so much, baby. I miss you so much.

The rest of the evening was spent at home with your brothers, Daddy, Danielle and Dave stopped by with their new puppy; Bash. We sat outside and played with him. Such a sweet, simple night. I often feel you around when Danielle is with me. She is one of the people in my life that makes me feel peaceful. I needed that tonight. Thanks, D. Love you.

Alright, my “not spicy, little monkey boy. I’m going to try to get some sleep. Really want to do boot camp in the a.m. but have not been succeeding in waking up for my 5 a.m. booty, boot camp call. Maybe tomorrow. I love you to the moon and back. I hope you are safe. G’night my love.

xoxo

Thank Ro(not God) for that Dental Floss tonight

Ro baby. I am going to try to write tonight; but I am tired. I will do my best because I miss you so very much and my mind is anything but still. Today started out o.k. Waking up knowing our reality, is never easy to do. I got up and started working on some things around the house. Organizing things. Very fun. I can tell things like this are going to become an obsession for me. Things that I can control, are very important to me now. Things were so out of control, for so very long, now it is as if I am becoming obsessed with the things I can control. Such as how much I exercise, how much I eat or don’t eat, the perfectly put away laundry….. I cannot wait to start project organization on my closet tomorrow. The once, carefree, chaotic life that we used to live, seems like a fairytale. It is no longer here. Oh, how I long for the chaos that you created. You used to leave my head spinning, but in such a good way. I could never keep up with you and your craziness. So, I just gave in and joined you instead. We were such a perfect match. You were the best little partner in crime. I miss you so much. I don’t like not having a partner in crime anymore. Trying to keep this up, without you, is so boring and dull. And just plain sad.

Ro baby. I didn’t finish that last night. I had to snuggle up with Quinn instead who was sobbing about how badly he misses you. I held him tight for a long time, in the bottom bunk of his bed. I didn’t know what to do; so I just held him and tried to comfort him. I kept telling him how sorry I was, how unfair all of this was, how much I loved him, how strong of a family we are…..but my words were of no comfort to him. I gave in and told him to let it all out, how it was good to cry about you. It ended up being too much, so I in turn, just gave in and cried with him. As soon as he noticed my tears, he sat up and said the words that he’s said to me a thousand times now….”You o.k. Mom?” I wiped my tears away and told him I would be o.k. if he was going to be o.k. He said that he would and we decided to climb up to the top of Liam’s bunk bed to sleep. Liam was snuggled in bed with your Daddy. I fell into another night of restless of sleep, with Quinn by my side.

The weekend is over. It was all pretty much a blur. We had friends over, ran errands, did things around the house, went Inferno Hiking a couple of times….. I had breakfast with my besties this morning. Me and my 3 dolls. Not many laughs, but more tears. It is o.k. though. I know there will come a time when we will laugh like we used to. It’s the friends that stick by your side, during the toughest of times; who you will be with until the end. I’m so lucky to have the girls’ that I do as they are truly the best of the best. I know I say this all of the time, but I wouldn’t be standing here, without them. My sisters for life.

I went to the grocery store tonight. Alone. I hate the grocery store so much. I needed to get things for the week. Once I stepped in the store, the panic took over. My head started spinning and I could not focus on a thing. I filled my cart with fruits, veggies, things to pack for your brothers lunches. I did not have a list, as I thought I could remember what I needed. I used to be so good at that. I knew there was something that I really needed to get at the store. The one thing that I could not forget. I had spent much of the day, reminding myself, over and over, what I needed to get. Once I was at the store, I could not remember what that one thing was; to save my life. I knew it was something to do with toiletries. I walked up and down the aisles, trying to remember what in the fuck it was that I needed. It wasn’t shampoo, soap, face wash, Q-tips…… I was about to burst into tears. Why is my brain not working anymore? This is so not fair. Why are you dead? You are dead and my memory is gone. I used to have a memory like an elephant. Almost photogenic. Just as the tears started to form, I turned down the toothpaste aisle. There it was, Ro! Dental Floss! I’ve never been so happy to see goddamn dental floss in my LIFE!

I made the mistake of going down the toy aisle. There it was. A Star Wars action figure that we never had. A new one. NONONONONONO. I picked it up. I started talking out loud, repeating, “Guy’s Helmet,” over and over just like you used to call them. I took a picture of it. I almost bought it. I had to set that toy down tonight and just walk away. I had to walk away from knowing that I couldn’t buy you that toy tonight and bring it home to you. You would have been so excited and I could almost feel you wrapping your arms around my neck and giving me one of your best kisses. I cannot believe that I cannot have that anymore.

Babydoll. I’ve got to say goodnight. Your daddy is sad and I just don’t know what to do with all of this. Everybody is sad. How can I fix everyone else around me when I am so badly shattered that the simple act of connecting, being attentive, loving, and compassionate to those closest to me, often leaves me locked in a bathroom, lights off, puking my guts out.

Thanks, Fuckwad Cancer for taking my baby away from all of us. I HATE YOU.

G’nite Ro. My babydoll. My “not spicy,” monkey, my blue-eyed boy. I love you to the moon and back.

And P.S. WTF is this thing? It could be the most genius invention, EVER. Way better than the snuggie. Can somebody get me one of these? I would like to put it on and wear it for the rest of my LIFE. Stupid life. But this so made me crack up.