Tag: pearl jam

Only Eddie Vedder could drink wine on a stage and make it look badass.

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Ronan.  Do I usually have this hard of a time, every year, right before the holidays? I think so, but to know so, I’d have to go back and read my blogs from the past years.  I’ve been doing enough reading of my blogs due to this book writing and I don’t feel like going back to read about the holiday seasons and how hard they have been for me every year since you left.  Every day is hard without you, but this time of the year there seems to be a shift about me that I cannot control.  Everything feels extra heavy, hard, sad, and the slightest things take up every ounce of energy I have just to get through the day.  I have been getting through the days alright really; I suppose.  That is actually a big fat lie.  I’ve been a fucking mess, but hiding it pretty well.  I’ve learned to become the ultimate pain hider.  I have learned to be present, to smile when all I want to do is cry, to be productive when all I want to do is curl up in my bed for a week, and to throw myself into things that take a lot of work, but the work leaves me distracted.  Oh, I’ve also been taking the best care ever of your Poppy sister 24/7.

I may have lost it last week which left me doing my normal screams and crying to your Mr. Sparkly Eyes.  “I think I’m having a mid-life crisis.” “Why the fuck did this happen?” “I talked to George Clooney last night and I’m going to run off with him.” (inside joke, but I really did freaking talk to George Clooney thanks to one Fairy Bad Ass RoMo) And my all time favorite, “Where is Ronan and who is taking care of him?”  I got sat down and talked to in the harshest but kindest way.  I was told I was in fact not having a mid life crisis, that everything I am feeling is just due to losing you which I of course already knew, but it was nice to hear it from a rational person.  “Listen, I cannot even fathom what you have gone through and will go through for the rest of your life.  I hurt badly from this and I only get to feel this on a small scale compared to you.  You have to carry this around with you forever, while the ones who cared about Ronan, your family, your friends, get to go on with their lives.  You don’t.  I cannot imagine what that must feel like for you.  But you are doing such amazing things and even if you can’t see it now, you are changing the world because of him and because of your pain.” I sat, listened, and fought back my tears the entire time that I was with him.  I let his words soak in and lick my wounds for a while.  “Tell me what I can do for you. Please.” I looked down at the floor and thought for a bit.  My list came in my mind later as I named off a few things, but really just thanked him for being such a dear friend.  He said some more things to me that I won’t repeat, but left me saying, “How do you know that?  How do you know everything?  Nobody knows that.  Does Ronan talk to you and tell you these things?”  I honestly think you do, Ronan.  There is no other way to explain how that man knows the darkest parts of my soul and heart, yet he is not afraid.  You only left me with the best and for that, I will always be thankful.  I sat quietly and watched as he bounced your baby sister on his lap and kissed her up and down.  She is so lucky to have him as her Godfather, to love and look after her.  I know he will keep her safe.

I’m full fledged in the middle of writing this book.  I told your daddy if I had a month, uninterrupted, I could finish it, easily.  The problem I’m facing is I may have too much material, and too much to say.  Go figure.  I’ve been writing about your treatment, which has been hard.  Reliving the things you went through, has not been fun and it’s not what I want this book to be about, so I’ve been trying to make this section, as short as possible.  This book writing has left me not sleeping or eating well and may be part of the reason why I feel like I’m no the verge of a breakdown.  I just keep telling myself, I’ve got to just get though this part, but it’s not like I have anything to look forward to next as I will just be writing about your death.  Fucking cancer.

As far as an update goes, things here for the most part have been normal.  Your brothers are playing a slew of sports 24/7.  Basketball, Baseball, and Flag Football.  I, of course, look for you on every field and on every team.  It still blows my mind that you are never there.  I know for a fact that you would be playing all the sports that your brothers are and dominating in every way.  You were always are mini Pat Tillman who was going to rule the world.  Poppy is developing such a little personality and at 7 months, is already trying to walk.  She has been keeping me on my toes and the determination that I see in her eyes reminds me so much of you.  My days are mostly spent taking care of her while continuing to fight for you and all that was stolen from us.  I’ve been hiking like crazy, with Poppy in tow of course.  She loves it and usually just falls asleep the entire time.  It’s our peaceful time to spend with you and the small time out of my day that I try to take for myself to be with my grief/plot how I’m going to take over this fucked up world.  I went to the Pearl Jam concert a few nights ago with your daddy, Uncle Jay, and Char.  Sometimes all you need in life is a little Eddie Vedder to remind you of who you really are.  I love that man and the concert was unreal.  By far one of the best ones I’ve been to.  Eddie Vedder will forever be one of my idols in life as I appreciate so much how he just lives his life the way he wants, with no apologies.  He just is who he is.  Not to mention the fact that he is deliciously handsome, insanely talented, and I could just stop and melt right here.  It was a great night, to say the least.  Pearl Jam ended the concert with “Keep On Rocking In The Free World,” and of course I sang along as loudly as I could while I thought of you the entire time.  I miss you so much, Ro.

Time to go, little man.  It’s raining like crazy here today.  I miss you.  I love you.  I hope you are safe.

xoxo

P.S. For those of you who have been trying to order some things on our Big Cartel site, I SO apologize.  We have been dealing with some *cough cough* technical difficulties.  It is being worked on and will be re launched soon as we also have a new foundation logo to unveil.  Our seal needed a little make-over and update.  I’ll keep you posted on when things are ready.  Thanks as always for your love and support.

A bedtime song for you and your Poppy sister, too

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This is the song your daddy has mastered for your Poppy sister. It sounds beautiful. You would have loved it. I’m tired tonight. I had a hard day. An o.k. night due to being with good, old friends and watching your brothers rip it up on the basketball court on this rainy night. Wish I would have had you on my lap to cheer them on. You would be so proud of them.

I miss you. I love you. I hope you are safe. G’nite baby boy.

http://www.youtube.com/watch?v=e4uTEhDqa_s

 

The election is over! Now, we can focus on turning the White House Gold for September and save some kids!

Ronan. I am having a hard time breathing. I can’t tell if it’s grief that is trying to suffocate me or Poppy. Either way it is making this life without you, harder than normal. I didn’t know that was possible. I spent the weekend at home, doing normal things with your daddy and brothers. The kinds of things we would have been doing, if you were still here. The things I have the hardest time doing now in life. Those simple easy things in life that I used to love so much but now I feel as doing them is harder than running a marathon. Without training. Liam was still a little under the weather. I tended to him and we went to bed pretty early on Saturday. It’s all I can do to make it to 9:00 p.m. without passing out. This growing a baby business is a lot of work. One that I am not a huge fan of. I never have been. The outcome is of course so worth it, but I have never been one of those women who enjoys pregnancy. It feels like a prison. I am trying to stay positive, but it’s hard to all of a sudden feel like you are just stuck in quicksand and there is nothing you can do to get out of it. Before I was pregnant, I had so many physical outlets that kept me sane. I could blow off steam so well with an easy breezy 8 mile run. Now I am panting at climbing a flight of stairs. So mentally and physically I am having a hard time getting out all of my grief in the ways in which I would before which may be another reason for my feeling of constant suffocation. I’ve been throwing myself into working on things for your foundation. That is saving my sanity a little bit I suppose. It is saving the shred of sanity that I have left.

Last night we had tickets to see my boyfriend, Eddie Vedder in concert. One of our little lovies, somehow got 6 front row seats where I got to sit about 10 feet away from Eddie as he gazed into my eyes and sang to me the entire night. That might be exaggerating a little bit but an over active imagination is healthy. He played our favorites. I was not the only one with tears streaming down my face as he sang our song, “Just Breathe.” I think everyone that was there with us, had them streaming down their cheeks too. I tried to fight it, but eventually the lump in my throat became too big and the tears came next. Buckets of them. I wiped them away and pictured you running up on the stage as Eddie sang his song, only the way he can. One that makes you get completely lost in another world. I, as always, was lost in the little world of yours. It’s my favorite place to be. I know Eddie had some Ronan ESP going on as next to last song was the one and only Neil Young’s, “Keep on Rocking in the Free World.” You’re telling me that was a coincidence? I know it was not. It was you working your magic in the ways that you always do. My entire body ached for you and I had flashbacks to the way you used to dance to that song. Thanks, Eddie V for playing it just for Ro last night. I know you did that for him. I could not have thought of a better way to end the night, then with that.

Today, I woke up bright and early. For going to bed so late last night, I woke up before the sun came up. I tossed and turned for about an hour before finally getting up. I had nothing of real importance to do today, but I was restless anyway. I ran some errands and went to the office. I worked through much of the afternoon on some foundation things and had about a half an hour phone interview. This one was hard for some reason. I forget what question it was exactly that I was trying to answer, but I know I had to stop myself and apologize for the sobbing that was taking place on my end of the phone. I think I remember telling the lady on the other end of the phone something about my last words to you and how I told you how sorry I was over and over again. She asked me what I was sorry about. I told her how I promised you I would save you and get you better and the fact that I didn’t or couldn’t will make me sorry for  the rest of my life. She asked if I thought you knew that you were dying. I think about that question a lot. I told her that I did not think that you did. How some of your last words to me were, “I don’t want anymore sleepy medicine.” I told her how you had to be put under anesthesia a lot and how I think you thought you were just going to sleep, but you would wake up again. I think about this so much in my head, all the time. I wonder if I should have told you that you were going to sleep forever. I didn’t. I don’t know if I should have or not. I’m so sorry you are sleeping forever and won’t ever wake up. I will forever have post traumatic stress over this. No mama should have to kiss her babies lips one last time and to be expected to live a life without kissing them again. Being a parent to a dead child is the hardest job in the world. Much harder than being the parent to kids who are alive and well. Being the parent to a dead child is the hardest kind of parent to be. I don’t think anybody in the outside world realizes this. It’s a truth I never thought I would know. It’s a truth that I will forever wish I didn’t know.

I had a board meeting last night at our new office. All of the girls were so excited. It was so nice to be able to have a space to go, that was not our own house. Our board meeting was long. A good 4 hours last night but we got a lot done as we always do. I woke up this morning with a big to do list. I got a lot of it done but by noon I knew I had reached my limit for the day. The little sleep I got last night combined with a raging headache led me to driving home and crawling in bed for a few hours. I took about a half an hour power nap but then had to get up to get some things done. Your daddy picked up your brothers from school and we all went out to grab a bite to eat as the cooking was just not happening tonight. I find myself sitting back and listening to your daddy a lot and the way he talks to your brothers and explains so much about the world to them. Once again, that bittersweet word will be used again because it is so bittersweet to hear the things they are learning and knowing you should be here, learning them, too. Tonight at dinner your daddy talked about everything from Shakespeare to the election. I watched them soak it all up like little sponges. They are so lucky to have a daddy like yours. Tonight, sitting at one of our favorite restaurants, I felt pretty lucky. Not every child grows up with a daddy like yours. So I felt lucky for that. Your brothers are amazing little boys and I know a big part of this is due to the strong male figure they have in their life. They are happy, loved, and have been through the worst, only to watch as we have survived it all. I feel like a bit of their self-confidence and security is coming back. I know this could have shaped them either direction. I am thankful that our situation has only seemed to make them stronger and have a love for our family  that is so strong because they understand how precious it is. Such hard lessons for young boys but I know this will make them stronger men. Of course you know I would rather have you here and not have to have them “learn,” any of this. I am just doing my best to be grateful for the things I have that are tangible to me, like your brothers brave little hearts.

I gotta go little man. Lots to do, always for you. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

P.S. I am not going to get into politics on here but I am so glad the election is over. I took Poppy to vote yesterday and we as a family had such fun last night watching the polls. It was a good night. I am so glad we can now focus on turning that White House Gold for September. I have faith that our President will do the right thing and make this happen. There are too many babes dying. A change has to come. I am thankful for President Obama and the Creating Hope Act. It’s time to take this to the next level and with all of you on our side, I know this can happen! Love you all, so much!

Your song for the night, Ro baby. Thanks, Jen.

 

 

This is for us tonight. It’s so fitting. I promise you I won’t ever back down. I love you. I miss you. I hope you are safe. xoxo

 

 

Dear 11 Fucking Months. I think I hate you.

Ronan. This solitude thing… it’s alright. It’s necessary. I’m doing it as much as possible. As much as I can for still being among the living, while really being dead. That’s what I feel like lately. It’s o.k. It’s part of this process for me. For as much as I’m checking out, I am still checking in when I can with the people who love me the most. With the people who I love the most too. I’ve been spending most of the days, solo. Hiking for many hours. Trying to be mindful of the way I’m feeling and not trying to distract with busy, busy things. There is a time for that. It’s not now. Right now, it’s time to check in with myself and that’s about it. Right now is not the time for the business that usually consumes me. Thinking about the past few days I know a lot of things have gone on. I woke up this morning to an empty house due to your brothers staying the night at your Mimi and Papa’s. They were going to be gone all day long which I knew was more than I could handle… you know, the whole being home alone until the evening. I woke up and thought, “Fuck. This is not going to be a good day, if you are home until 5 or 6 tonight, in this quiet, empty house. I threw some things in a bag and headed out the door. I sent Dr. Jo a text that simply said, “Coming up there for the day to go hiking.” Up there being Sedona. Why not? It sounded like the perfect thing to do instead of a sad/lonely day at home. She told me to just come to her house when I got up there and we would go hiking, together. Even better.

I arrived around 11 to the one place that now feels like one of the safest places in the world to me. A place that fills me with solace and gratitude. The comfort of Dr. JoRo’s house and that beautiful place of Sedona that she lives. I am no fool. Without her I am quite sure I would not still be here. I’m not too proud to admit that she has pretty much saved my life. In a weird way I feel like she’s been waiting for me for a long time. Or rather, we’ve been waiting for each other. I’m quite sure we were supposed to meet in this life. Just fucking sucks it had to be this way. I’m just thankful I found her when I did because if I did not, I am sure I would be in a mental ward, doped up on 20 different drugs, because don’t you know, a pill makes everything better/go away. Fucking emotionally irresponsible bullshit that medication thing is. More on that later…

Dr. JoRo grabbed her expert friend/neighbor in all things Sedona/nature/trails to take us on a little adventure. It was a good 2 hour hike where we talked but in a quiet/respectful way. It as nice as nice can possibly feel. Much better than being at home, lifeless, in bed where everything hurts so much that I think the pain alone is actually going to kill me. We returned to her house where I gave her one last hug before she leaves for her trip to NYC. So wish I were going with her. Missing our favorite big city so much. After I left Jo’s I decided I was not ready to go home yet. I drove through Sedona to go on my own hike, with my non existent map. I found myself hiking through the trees, fighting with a lot of sticker bushes/ branches, and scaling the side of some huge rock to perch myself up on a cliff where I settled into a couple of hours of reading/writing/sitting with your blanket while the hot sun poured down on my shoulders. My own therapy for the day, I guess. I left Sedona and drove way too fast with the music blaring way too loud during the entire drive back to Phoenix. I let myself get lost in the world of Pearl Jam for a while which always makes me drive faster/miss you so much more.

I came home and your brothers were still gone. I jumped in the shower and decided I would meet Rita for a dangerous night out. We went to see “The Hunger Games.” This was totally dangerous for 3 reasons. 1) I never go to movies anymore. I have a hard time sitting still. 2) We went to some totally sketchy theatre (o.k. so not really… just downtown phoenix) 3) We went to “The Hunger Games.” A movie about kids killing kids. Or kids dying. Or if you have a dead kid, you should maybe not watch this movie. I didn’t really think about this, going into it. I didn’t really think about it until there was a scene where a little girl dies and they do such a good job making you feel it that I actually felt like I was the girl in the movie, kissing your lips for one last time and crying out like a mother who just lost her child. Feeling like the mother that I am who watched you die. I know what happens. I actually know what it really feels like in real fucking life and not just by watching it on a movie screen. Rita grabbed my hand and asked if I was o.k. I nodded yes as the hot tears slid down my cheeks. She held my hand until the scene was over and then asked if I wanted to leave. I told her no, that I was alright. I lied, but I really wanted to see the ending. It was a pretty good/entertaining in a Lord of the Flies kind of way, movie. One that I’m sure I would have loved before losing you because the reality of it would have never touched me, right? Yeah right. So we all walk through life, thinking. So thankful I don’t have that problem anymore, Ro. So thankful that I get to have you dead so I no longer know that I or anyone around me is immune to death. I fucking knew that before you. I talk to Jo a lot about how I always had a feeling that you were not going to be mine, forever. How I was never worried about you learning how to count to 100, how I never pushed education stuff on you the way I did with your brothers. I tell her I was always so happy and thankful for the exact moments we lived in. Not the next day moments. Not even the future. Just the present. Just when you were mine and I was yours in that exact second of the day. It made for the best/funnest life in the world. It made for the happiest life I’ve ever felt by just being with you. JUST BEING. There were no expectations. Everything was so pure and organic and real. It was just us and we really did whatever you wanted. You wanted to wash your trucks outside, naked, in the mud? Done. You wanted to rub your little dirty muddy hands all over our windows? Done. You wanted to spray our sliding glass doors with the hose? Totally! You wanted to color on them too? Alright! You want to stab our leather couch with a pen and make big holes in it, big deal, Ro. You were leaning/exploring/pushing boundaries the way you should have been. I was never going be the one to contain you creative mind. A mind that always seemed so much wiser than even mine. You knew what you were here to do. I truly believe that. I know you are still here, baby doll. It’s just the physical part of you that I miss so much.

Ronan. Holy shitballs I think I hate Easter. Actually, I don’t think I hate Easter, I know I hate Easter. Easter without you this year, sucked balls. And not in a good way. We didn’t celebrate Easter at all this year. We celebrated Feaster instead and it was awesome, for being not awesome. We spent the weekend hanging around the house. I cooked a Brisket and and taught your brothers about all things Passover. You cannot have a proper Feaster, without a little religion. So, we talked a lot about Passover and what it means. We went to our own church on Sunday which was in Sedona, at Oak Creek Canyon. We spent Sunday hiking, getting dirty, playing in the water and your daddy even jumped off the side of a cliff. We spent Sunday doing all things that you would have loved. I tried to have the best day possible by getting lost in the world of your brothers who seemed to have a wonderful time. I’m not going to lie. It was an exhausting day, for being as relaxing and peaceful as it was. There was not a better way for us to spend the day, but it was still brutal to spend our first/last holiday with you, without you. I was glad when the day was over and I was able to lay down and fall into my Ambien induced coma. I didn’t have a choice. Sometimes I just have all I can take during the day and fighting with my sleep last night would have thrown me over the edge. I fell into a black oblivion instead.

So, today is 11 months of fuckery. I spent it alone, on a mountain and at the car wash. I found myself at the car wash today and looking back now, as I sit here writing tonight, I can actually laugh at myself and the shit that happens to me on a daily freaking basis. Case in point, victim one today, Danny’s car wash dude.

-Danny’s car wash dude- “How was your Easter, Miss?

Me- “Shitty.”

DCWD- “Really? Why?”

Me- “Because I have a dead kid. Because my son is dead.” -insert flow of snot/tears here/dripping everywhere

DCWD- uncomfortable silence, “Ummm… what? Really? Well, um…. o.k. Well, are you o.k.? Like for real? Because you don’t seem o.k.

Me- “Oh my gosh. Um, yeah, totally o.k., I’ll really be fine.”

DCWD- “O.k… do you want your floor mats washed?”

Me- “Yeah, please. Thank you so much.”

You know what else happened? For the first time today, when some other dude at Danny’s Car Wash asked me how many kids I had, I said 2! I about threw up. I went to correct my mistake, but I couldn’t get the words out of my mouth and I did not feel like explaining myself because I knew I would end up in hysteria. So, I freaked out in my head instead and just walked away, in a daze. That’s when I was approached by the other guy and that’s when the “I had a shitty Easter and I have a dead kid,” came flying out of my mouth. I am surprised I was able to drive my car after that whole incident today. I came home, threw myself in our bed, and sobbed. Then I put on my clothes and went inferno hiking in the hot, hot heat of the day. After my inferno hike, I came home, showered and picked up your brothers from school. I took them for a snack and off to the batting cages where we practiced baseball and all things fun. I didn’t know trying to have fun, would be so freaking hard Ronan. I just want to bury my head in the sand. But I continue to keep trying, for the sake of them and nothing else. Because those little boys’ deserve to have a mom who has not checked out, for as much as I want to, I just can’t. We came home and I was so tired. I helped them with their homework and after having all I could take, I found myself in my freaking bed, once again. Crying. This time, Quinn found me. He cuddled up next to me, and asked me what was wrong. I told him I just missed you. He sat with me as I cried for a few minutes (no mom guilt here at all) and I then made myself get up. We spent the rest of the evening at Uncle Jay’s house (lifesaver) swimming, eating pizza, and watching the Suns game. Thank GOD for that Uncle Jay of yours. Your daddy joined us and this shitty 11 month day is coming to an end.

I’m tired of being tired. I’m tired of being sad. I’m tired of all of this shit in this fucking crazy world. It truly is insane, Ronan. I cannot watch the news/read the paper because of all the things that I just cannot believe are going on. Some lady flushed her baby down a toilet. Facebook just bought Instagram for a Billion dollars. Everyone and their mothers are getting their own “reality” shows. Nothing out there, makes sense to me. It all makes me angry. None of it matters. It’s all “stuff,” getting in the way of real reality like kids dying and parents struggling to stay alive and survive. And wait… why are all these kids with cancer still dying and still being over looked? Shouldn’t this problem be getting a little better? See what happens, when I take a break? A whole lot of nothing gets done. I did hear that Mattel is going to make the bald Barbie though. I have not read the details, due to being unplugged from everything but I hope it is true.

Dr. JoRo is in NYC now. She asked for a little list of some things she could for me, during her one day off. These are the things I told her to do.

1) Run in Central Park at night. Thinking she probably will not do this.

2) Visit Sloan Kettering and kick Dr. Kushner in the balls for me. (she could totally dress up like a Ninja and do this)

3) Eat Fro Yo at 40 Carrots inside Bloomingdales. (this might be a little safer and was one of our favs)

4) Eat Pizza at Delizia’s for us. (another one of our favs)

I miss her so much already. She is not a very big fan of our favorite little city. I am doing my best to make her into a New Yorker, without being there to actually do it. Next time:)

Alright baby boy. This is all for tonight. Yes, I’m still in hiding and I have still been hiking every single day for our month of mother fucking madness. And today, I was EXTRA dangerous and did not wear sunscreen. My inner rebel was loving it. I love you. I miss you. I’m so sorry. I hope you are safe.

xoxo

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In the words of Eddie Vedder…. I’m still alive. But do I deserve to be? Is that the question? If so, who answers…. who answers??

 

 

Ronan. I feel like I have run a marathon. I am emotionally beat, but my mind refuses to be still. I need you here. I need to tuck you in, to kiss you goodnight, to tell you I love you and to hear you tell me you love me back. I miss you so much that sometimes I think this pain might really kill me. I’m not that lucky because it never does. I just continue to feel like I am being stabbed over and over again. It is an endless, vicious cycle of pain and misery. It hurts to even breathe. But I’ve been productive. I spent the weekend, throwing myself into work for your foundation. I have so many ideas. I have come up with a new dream and vision. It’s HUGE. I think it’s slowly been in the back of my mind but it just become clear to me a few days ago, what it is that I think needs to be done. Not very many people know about it. I’ve only told a few as I think I need to keep this one to myself for a while, until I can get a handle on how this plan of mine, can actually become a reality. It could change so many things. It could help so many people. It’s just one of my dreams for this disease, just one of my many ideas. I’ve obsessed over it for days now. But it’s like slowly putting a puzzle into place. The pieces have to fit just right and it is not something that can be rushed. It has to be done just right, so eventually all the pieces will fit into place. It’s time to start working on the pieces baby. One by one.

So, I may be out of control with our little Taco place. I spent 3 days in a row there. 1 lunch, 1 dinner, and one very productive foundation work day. Turns out, you can hijack the wi-fi from the big restaurant across the street. SCORE for Team Ronan! I’m going to have to start up a Taco/Mexican Coke fund. I spent last night there with your fairy RoMo and Margarita. It was kind of a last-minute thing from your RoMo as she was like, “Hey, I’m thinking of changing my flight to stay an extra day!” My response was please do so, that way we can go and have more chips and salsa. So we did and I hijacked Margarita to come along with me. BEST NIGHT EVER. Is it bad, that my best nights ever now revolve around everything you?? Because to me, it means the world to me the way I get to sit around and throw out these ideas to people who care so much that they will give up their Saturday night to figure out what it is that we need to do to make these really, really great things happen?? Do you know what I was told last night?? That the word no, was not acceptable. That there is always a way to work around things to make things happen. I LOVE that. I need less no’s and more let’s find a way to fucking do this! Because so much needs to be done in a big way for pediatric cancer, to change things. Last night was so inspiring, so powerful, so moving. At one point, your RoMo just looked at me and goes, “I can’t explain this, Maya, because there is no explaining it. Ronan is changing everything. There is a shift and a movement happening. No other “sick,” child has had an effect on people like this.” I just quietly listened and told her I knew. We all know that this is beyond something bigger than us. I know that this is all due to you, your beauty our love, and your wild and free ways. It is too beautiful to try to explain with words. Let’s explain them with the huge things we are going to do in this world instead. We’ve got a pretty kick ass list of names that we are going to try to recruit to help us. It’s time for this world of ignoring childhood cancer, to change. Enough is enough. You should not have died. Let’s try to help other little one’s so that one day, they won’t have to either. I don’t think that’s too big of a job, do you? I know you don’t, otherwise you would not be pushing me forward to do this.

Today, I went back to our little Taco Shop with my imaginary board member that does not exist. We sat, went over the huge to do list. She gave up her Sunday, for me, for you, for us. What do I even say to that? Nothing. Because she does not want the huge fuss made about her, that I want to make. She just wants to be behind the scenes, helping us out in her quiet Wizard of Oz way. She is the freaking Wizard of Oz in a way that leaves me speechless. Speechless but tearful and thankful. Thanks, you know who you freaking are. Thanks for everything but most of all for looking at me today and going, “We can do this. This is easy.” Thanks for believing in me and Ro. Thanks for being just a kind-hearted, secret badass chick in general. You are quite simply, are RoMazing:) Oh, and little LoRo…. my other little amazing dolly who has worked so hard on the RoLove that she is creating….. I need to tell you thank you tonight. For not being a normal, 17-year-old girl. For being different in such a way that you have set the bar so high, for other girls your age. Your heart and the love that you have for Ronan and all these other cancer babes, is so beautiful and you are such a gem. Thank you for all of your hard work and love. I’m so thankful for you.

Alright, my spicy little monkey. It’s kind of late. My eyes are burning and I think I have to try to sleep. Not just for a few hours. Please. I just want some normal sleep. Not sleep which now seems to come in the form of fall asleep for a couple of hours and wake up to Ronan is dead. Ronan is gone. Nothing in the world is right so screaming voices take over in my head, instead. I’m sleeping in your bed tonight. Maybe this will help. It seemed to be working for a while. I hope it will work, tonight. I love you. I’m sorry. I miss you so much. I hope you are safe. G’night baby doll.

Grief! It’s a tricky mo’ fo!

Ronan. Grief is a tricky thing. It’s one of the thousands of things in life that I will never understand because it is that out of my control. I never know when it is going to be an o.k. day., a really bad day, a paralyzing day, a “crazy,” day. I never know who I am waking up to in the mornings, who I am having breakfast with, who I am showering with, who I am folding laundry with, who I am sleeping with. For somebody that has lived with so much consistency in their life for so long, the living this new life of never knowing is exhausting. But I keep rolling with the punches.

Guess what I feel like today? The really bad mama/wife alter ego. Guess what, Ronan. Today, I don’t want to be a mom or wife at all. Try living with that guilt. I never felt like this before losing you. Now, I feel like this all the time. I want to run away and never look back. I want to be alone with my pain. I don’t want the comfort from your daddy or brothers and I don’t want to comfort them. Does that make me evil and a bad person? Because that’s the way it feels. All I want is to take my pain of losing/missing you and run away and keep it to myself. I want to live in the middle of some dark, dreary forest where it rains all of the time and live in a little house, all alone. Just with you and our memories. I don’t want to see our old friends. I want everyone to go away. But you know how this would end if I actually did this? I would end up killing myself. Sylvia Plath style. Her death was so dramatic, yet it was what she wanted and the way she wanted it. I respect that. I’ve always loved that woman.

I think about death all the time. It doesn’t scare me. It didn’t scare you which in turn means that it is something that I don’t get to be afraid of either. When it’s my time, it’s my time. I know that life is too short to sit around an worry about it. So I don’t. I think about it instead. You know what the 2 things that are guaranteed in life, Ronan? Death and this exact moment. Not 10 minutes from now, not 10 hours from now, 10 days from now, or even 10 years. I’m not going to worry about the fucking future when the future is a lie because it is not guaranteed. I am going to worry about this moment. I am going to put some ideas out there and if they happen, great. But if I die before they do, at least I’ll know I put some things out into this world. At least I’ll know, I tried. I’m going to say the things I fucking want to say, and regret NOTHING. As long as I stay true to you and me…… regrets are not going to happen. I’m DONE. Done worrying about what the others out there, think. The others of the world can fuck off. I don’t care who has a fucking problem with my GOD is an ASSHOLE SHIT. If you are going to judge me for that, then you can FUCK OFF too. There is no God out there…. the good and all mighty powerful God who would do this to parents. Who would do this, to you. So judge me all you want. Keep living in your little bubble and lock your doors, so I don’t turn your kids into Satan loving little devils. If you really think this about me, due to what you read, then you don’t know me at all. You are being judgmental and due to that alone, please stay away. You know the kinds of people that I appreciate so much in this life? The parents. The parents who read this, yet they still invite Liam and Quinn over for play dates and they still let their kids come over for play dates at our house. Even if they do not know me that well… they have taken the time to get to know my children and they see two of the kindest, most gentle souls so they know that no matter what I write….. everything is going to be o.k. They trust me; even though they do not really know me. They are the parents, who know I am in agonizing pain, but who let my children be a reflection of me. This means everything to me. Everything, Ronan. I am a good mom. I am a good person. This is my outlet where I can scream, cuss, and cry because I don’t always get to act this way in the real world. In the real world, I tend to remain calm, cool, and collected. In the real world, I keep it together and for the most part, I am able to act like the “normal,” mama under these hellish circumstances. Hell is real alright but all the devils are here. Tell me I am going to HELL and I will never see my child again. This is HELL. I am living in HELL, right now. I know in my heart, that I will see you again, Ro. I know this and this is the only thing I’m answering to in this life.

Today, I don’t even know what I really did. I think I stayed home which may actually become the death of me. I think I could die from the pain alone of being in our house, without hearing the little pitter patter of your feet and the sound of your squeaky voice, yelling for me…. your giggles. The best giggles in the world. I stayed home and played the domestic good little wife roll that is now like nails on chalkboard, but has to be done. I folded a fuckton of laundry. I licked a lot of envelopes. I got a little last minute text message from my newest/oldest yeah I feel like I’ve known you forever friend, but I’ve never actually spent any time with you that said, “Do you need some help with some things?” I said, “YEAH! Do you fold laundry?!” She said she totally did and within the hour she was in my house where we didn’t actually fold laundry, but we licked envelopes and wrote down lists of shit to get done ideas instead. It was a highly unorganized fly by the seat of your pants afternoon where you don’t know what do expect but that’s always how the BEST things, come about. We have lists of a lot of things that have been piling up in my head that I just don’t know what to do with. Things that I am passionate about, getting done. We came up with some new ideas too. We talked about the importance of keeping everything we do in regards to your foundation, true to you. Trust me, Ro. I know how pissed you would be about me throwing an event full of fancy evening gowns and diamonds. Kinda wasn’t your thing. We’ve got some much better ideas in store.

After our productive day of many lists, I picked up this new little friend of mine for dinner. I got to meet her little boy and it was love at first sight. I only got to stay and hang with him for a few minutes but I really wanted to stay and play with him, for hours. I wanted to get lost in his little world and let everything else, slip away. Maybe next time:) Margarita, took me to a really dangerous part of of the hood, for Mexican food. Well, not really but we pretended like it was. It was pretty dangerous having to watch the little blond boy, skip around our table while we were trying to eat. It was pretty dangerous of us to cry over our food and talk about all this “Ronan is in heaven, playing with puppy dogs bullshit.” I’ll say it again, like I always do. I don’t care if this really is the case. The fact of the matter is, you are not with me, like you should be. That in turn, makes everything so wrong. We took our danger crusade to the neighborhood Ross and browsed the aisles of the best infomercial products you could buy, dangerous chemical filled bubble bath, and some of the best ugly dresses I’ve ever seen. Of course we were walking down the aisle full of random nothingness and some little Star Wars action figures were just staring at me. They were all alone, among a bunch of household items. I grabbed them and told, Margarita, I had to buy them for Super Nate. She then goes, “Well they are kind of just sitting there, screaming at you to buy them.” Yes indeed they were. How could I ignore that??? I couldn’t so I took them home with me instead.

I came home to your brothers all curled up on the couch, watching a Pearl Jam documentary on T.V. I snuggled on the couch with Quinn who is still, stuck to me like glue. I mumbled to your daddy that the lead singer of Pearl Jam, Eddie Vedder, was my long lost soul mate in life. He likes to use the word “Fuck,” a lot too and is all about following his heart while breaking the rules. I’ve always been a huge Eddie fan. And the fact that he is such good friends with your favorite, Neil Young is the icing on the cake. I think I need to work on getting those two to do a Rockstar Ronan Rock Concert for you. It’s already on my list, baby boy. I’m going to make it happen. I can see the line up now…….

So, baby boy. Guess what? I have not been taking my Ambien to sleep at night. Guess what I have come to find out. That if I snuggle up in your bed at night, I can actually sleep for hours…. uninterrupted. Last night I dreamed about dolphins all night long. I was in the ocean, holding a baby dolphin and it was so peaceful. No doubt, the baby dolphin was meant to be you. I’ll never forget our summer and how the dolphins would just appear every single time I went out to the beach. I know that was you, letting me know you are around. So last night, I slept in your bed and dreamt of all things peaceful. I cannot remember the last time that has happened. Thank you for that. It’s early and I need to get moving this morning. I miss you. I love you. I hope you are safe.

xoxo

Dear Lovely Little Blog Readers,

I am putting this out into this big, beautiful world that I know exists. If anybody knows of any office space that may be available free of charge…. I so need it. I cannot continue to run this foundation out of my house, alone. It’s too quiet. It’s too sad. And his room, full of his toys is just down the hall from my dining room where I often sit, crying, trying to get things done. Yesterday, my friend came over to help me stuff envelopes and pointed out that me sitting at home, doing these things alone was not healthy. I knew this, but I never thought to ask for anything else because this is just the way it has to be. She quietly told me that I should look around to see if anyone has any empty office space they want to let me use. I would be a really good, quiet tenant. I am really super clean and I smell good, so I have those two things going for me. I don’t really run around screaming obscenities unless provoked so for the most part, I’m a calm collected girl. I have really good references if you need them;) If anybody knows of anything, can you email me at mayawoody@gmail.com. But I don’t want to pay rent. I don’t want any overhead. I would never feel right about taking money out of Ronan’s Foundation, to run things/advertise/etc….. I am not using his money, this way. So if anybody, just has some empty space they know about…. that is just sitting; I’m your girl. I would be SO thankful. I may not end up like Sylvia Plath; with my head in the oven.

Thanks lovies. Oh yeah. Space needs to be in AZ:) I mean Transylvania would be awesome… but the Phoenix area is more realistic.

There’s nothing like muddy boots on a rainy day

Ronan. I don’t know what happy feels like anymore. But being back here, is the closest thing to happy I’ve felt since losing you. It’s no secret. I’m a Washington girl at heart. I love everything about the Pacific Northwest. I think it’s one of the most beautiful places on the planet. I really needed to get out of Arizona and the forever bright, sunny skies and fake plastic trees. I needed some rain, gloom, and mud. I needed some down time without feeling the never-ending pressure of being busy and on the go. I needed to get away from the sociopathic “friend,” that I cannot seem to escape. I needed room to breathe. I miss it here. I’ve been hiding out though. Spending time with just your brothers, Nana, and Papa Jim. Normally, I would make time to see all the old familiar faces that I miss so much. But I’ve been too scared. I know what I look like and it’s not pretty. It’s sad and painful. I would rather keep sad and painful to myself. I’ve haven’t really left your Nana and Papa’s house. Except to run the lake. This has been my only escape. The rain has been constant, just the way I like it. I’m going to be sad to leave and get back to the sun that constantly seems to be blinding me. I am glad we came and I am glad we had the best time possible. We all missed you though. That never goes away no matter where we go.

Tonight, your brothers and I went to dinner with Nana and Papa. I’m trying to keep my meal down but I don’t think it’s going to happen. We stopped at the lake after dinner. I told your brothers how when I ran the lake today, I stopped and swung on the swings. I asked if they wanted to swing tonight in the cold, dark, rainy weather. They said they did so we had Papa Jim pull over and let us out of the truck. We ran around on the playground together. They were so excited as the playground equipment is all new and it had lots of fun things to play on. I dared Quinn to go down the big slide even though it was soaking wet. He did. Liam followed and ran around shouting how he was “The King of the WORLD!!!!!!!” as he climbed to some tall tower. We all talked about how much you would have gone crazy on this playground. I was able to put my sadness for you, away in my little back pocket for the 15 minutes that we played. I chased your brothers. I pushed them on the swings. I ran around with them. It reminded me of how much I love them. I mean, I know this Ronan. But when going through something like this, pain overshadows everything and it makes it hard to feel like you are able to feel love again. It might be the protection mode I have gone into as well. There was nobody closer than the two of us and then you got sick and died. I have put up a wall as it seems to be instinctual to me, to protect myself from getting hurt again. This wall was invisible tonight. It disappeared. I watched your brothers and seeing how happy they were, running around late at night, with just me, made everything else disappear. It was a good reminder that I have done such a good job with them so far, and I don’t want to fuck that up anymore than I already have. I want to be a better mama to them. I want to not be so sad all the time. I want to be thankful that I have them. They are everything to me. They deserve to have a mom who has fun with them. It’s been on this trip that I have found that part of myself again. Being here, changes everything. I just hope I don’t lose it again when we head back to AZ. Being here reminds me of how the simple things in life, really are the best. Childhood should not be about watching sports on T.V. and playing video games. It should be about jumping in mud puddles, getting dirty and not caring. It should be about going on trail walks, awesome playgrounds, shooting guns, playing in tree houses, learning about nature, spending time with your grandparents and a little girl named BriBri who is like my little sister. Who I have known since she was 5 and she is now 17. I was so scared to see her. She loved you so much, Ro and you loved her even more. I didn’t even try to hide it. As soon as I saw her, I jumped on her and fell into her arms. I held her and got teary eyed. She didn’t have to say anything…. I know she is broken into a million pieces too. It was hard for me to see. I was always her older sister who was going to protect her from everything in the world. And now this. She has to watch me, go through the worst thing possible. I’m so sorry for that. Our sisterly time together was always spent talking about boys, colleges, high school, make-up, movies, and everything we did revolved around you 3 boys. Now it’s just 2 and it is so wrong that we don’t know what to do. I tried my best to ask her things about her life that are going on. I used to be able to give her the best sisterly advice. Now, I know nothing because there are no guarantees in life, except for death. I am not about to sit and talk to my innocent 17-year-old sissy about that. I used to be so much fun. I used to be “cool” to her. Now I’m just the sad mom who lost the most beautiful boy in the world. I’m the sad mom who fought for 8 months taking care of her cancer baby. I’m changed. I’m different. But the bond between us two girls will always be there. Once you love someone with all of your heart, nothing can stand in the way of that. We will find our place back together again. Baby steps. It’s just so hard because I know deep down, all we want to do is curl up together and cry. And that might have to happen at some point to just get it out there and acknowledge what has happened. The most awful thing in the world that makes people so uncomfortable and sad, that they would rather just not talk about it. I get it. I love you Boo. I will forever think of you as my little sister. I will promise to try to take care of you like I used to. I won’t let this too much reality, come between us. And you are 17 now! So crazy! You are so young, beautiful, and have your whole life in front of you. I know you are going to do amazing things. I hope I can guide you the best I am capable of. I miss that so much.

And today. 12.29.2011, it’s been 10 years. 10 years since I married my best friend. A relationship that started off on a crazy night. A relationship that I knew on our first date, that I was going to marry him. We bonded over late night dance parties to his juke box. Playing Zelda for sometimes weeks when we had off breaks from school. We were both night owls and loved to sleep in late. Our love for concerts and music. His, Pearl Jam. Mine, Prince. But I ended up converting over to Pearl Jam and became just as crazy for them as he was. We were two young kids, who were crazy for each other from the beginning. Here we are 10 years later. It seems like just yesterday that I married my Woo. We had such big plans for our 10 year. Tomorrow, I’ll be in an airport coming home late at night to him. Tomorrow, will just be another day. So it is tonight that I will tell him some things. And I know I don’t talk about him a lot on here and that is mostly because this is about my adventure with Ronan and my pain and sadness. Some things are too sacred to me still….. such as him. I also know that my husband is my best kept secret and I’d like to keep him that way. Could you imagine all the hussies that would try to go after him if they knew how amazing he really is??? I am not up for dealing with skanky bitches at the moment. Because if word got out, that a real life prince charming existed, I would be screwed. But he does. It is him. I married him. He is the best thing that has ever been mine. I’m not going to lie….. this has been super hard on both of us, individually. As a couple, we are still doing o.k. Not great, but that’s just because we are always so sad. But he still opens my car doors, he still kisses me goodnight, he still tells me I’m beautiful and he loves me. I’m the asshole. I’m the asshole who pushes away as I don’t think I’m worthy of feeling his love because I feel like everything is my fault. And he is the last person in the world who deserved any of this. I have a lot of guilt and anger that I am dealing with and sometimes I take it out on my easiest target, which is the person who loves me most. HIM. He is a saint. He is a gem. He is the truest, most honest, thoughtful, caring, brilliant, charming, and witty man on the planet. I sometimes take him for granted because I get stuck in my head that I can’t feel any of the things he so badly wants to give me again because you died, Ro. I hate that I have to admit all of this shit to you all. I wish I could tell you I am just as amazing as him, but I’m not. Not even close. I’m the asshole. And I’m so sorry Woody. I’m crazy about you. I love you so much. I am so sorry we had to lose our little boy. I’ll never stop telling you I’m sorry. But I’ll never stop telling you I love you either. I know we are fine. But fine is not good enough. I know we can get back to a somewhat happy life again because we started this together, crazy in love, and that’s never changed. Not even after going through something as awful as this.

O.k. Stopping now. I don’t want to completely mortify my husband who prefers to keep things a little more quiet and private. I’m an open book and I am so glad he is o.k. with that. He must really love me to put up with me and the shit I write on here:) I don’t think many husbands would tolerate that. So thank you Wood. For after 10 years of marriage, you still make me want to be a better person. Everyday. That’s how I knew you were the one for me when we first starting dating. You made me want to be the best version of myself that I could be. That is powerful stuff right there. You know it’s true when the other person can inspire such greatness in you. I love you to the moon and back. Again, I am so very sorry. I know how much you miss him too. I would give anything to bring him back to you. We are going to be o.k. I promise to try to not be such an asshole. I promise to try to start living the way Ronan would have wanted me to. But I know when the sadness comes, you will be there to hold my hand. I will try not to push you away so much. I love you Woo. I love you Ro. We both hope you are safe. We are both sorry. You were perfect to us. You were our everything to this entire family. We are trying, baby. The stakes are high, this waters rough, but this love is ours.

G’nite my spicy monkey boy. I love you.

xoxo