A trip to San Francisco for the saddest reason possible.

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Ronan. I am quite simply emotionally beat. This trip was a lot harder than I had anticipated. I kept telling myself I was going to be fine, that I would be able to hold it together like a champ. For the most part I did, but the few days I was here was full of a lot of tears anyway. Macy picked me up from the airport and I was greeted by my beautiful friend and the wonderful rain. Or your tears as I like to call them. We headed back to her place and had plans to go out to dinner. She had made reservations to take me to dinner for my upcoming birthday. We ended up canceling our reservations due to the fact that I was absolutely wiped and in no way could muster up the energy to leave her cozy place and head into the city for dinner. We ended up grabbing take out instead and dined in our pajamas. It was a very sweet and perfect night with my dear friend.

We woke up the next morning and grabbed some breakfast before Teddy’s services. On the drive over, Macy kept looking at me and asking me if I was going to be alright. I gave her my most confident, “I’m totally fine!” response. We arrived with plenty of time to spare and Macy dropped me off up front so she could go and park. I walked into the synagogue where Teddy’s service was being held. It took me a few minutes before I saw Teddy’s mom, Clarence. As soon as I laid my eyes on her, it was game over. I embraced her for a hug and instantly lost it. I was the one who was supposed to be strong today for her, but here she was being strong for me. She whispered something like there would be plenty of time for tears inside. I tried to pull myself together as much as I could and said something to her but I honestly don’t even remember what. We parted ways and I found myself making my way over to a little table they had set up. It was lit with candles and had some pictures of Teddy, you and another little girl who had lost her battle with Neuroblastoma as well. I swear I felt myself leave my own body as I stared at the little picture of your face in front of me. “Who is that beautiful child,?” I thought to myself. I felt myself get smacked across the face when I cam back to reality only to realize that child in fact, was you. I walked away to find Macy and grabbed onto her so we could go inside to find some seats. Once we sat down, she left me to go and use the restroom. I sat there, alone although the place was filled with people. I felt myself lose all control seeing Teddy’s pictures everywhere and of his favorite things displayed in front of me. As soon as Macy came back, I was a total mess, sobbing hysterically. I looked up at her and spat out through my tears and snot, “I thought I was going to be alright.” She sat down next to me, grabbed my hand and let me cry on her shoulder while her tears fell all over me as well. Drip, drop, drip, drop went Macy’s tears all over my hand. I felt like I was getting a shower. I grabbed the kleenex I had and gave her some. The next couple of hours we pretty much cried non-stop. I don’t think I even shed a tear at your funeral/celebration of life/bullshit because you shouldn’t have died. I remember being so numb to it all. I was not numb on Sunday. If anything, I felt more than I have felt in a very long time. It was a beautiful day for the most fucked up reason of all. I don’t even feel right calling it a beautiful day. A beautiful day because a 3 and a half-year old died of cancer just seems so wrong to even say. It was a fucking fucked up day but due to Teddy and everything he is… beauty shined through anyway.
I had an empty seat next to me the entire time. I kept telling myself you were sitting there with me. That there was a reason in this packed synagogue, that the seat next to me remained empty. I truly believe that in my heart, you were sitting by my side. I kept picturing you holding on to my hand. At one point, I couldn’t take it anymore. I had to get up and get some air. I found myself outside and before I knew it I was comforting a stranger that was sobbing on a bench. A neighbor of Teddy’s I think. She didn’t have any kids of her own but had been through all of this with Teddy and his family. I sat there and held this stranger, telling her how sorry I was. She looked like she was going to pass out so I sat with her until she insisted that she was alright. I went back inside and sat back down by Macy. One of Teddy’s doctors got up to speak. It was the most heart-warming, gut-wrenching thing I have ever listened to. The way he spoke about Teddy and the love he has for him was truly remarkable and something so special. He talked about how when Teddy died, not only did he die, but his future died as well. How Teddy may have grown up to be a physicist curing diseases or a great musician like his dad, but now we will never know because Teddy has no future. He will never have a future and how wrong it is that childhood cancer does not get the attention or the funding that it deserves. I think about this all the time. How I know for a fact that you would have grow up to do something absolutely amazing, but now you will never get the chance and neither will all of these other kids who are being murdered by cancer. Futures of these kids are being thrown away left and right and nobody seems to give a fuck. How is that acceptable? How the fuck do people sleep at night, knowing this? I know that it is now my responsibly to give you the future you were robbed of by making something extraordinary come from your death. It is my job, as your mama to give you the future that you cannot have here living on this earth.
Teddy’s day was truly all about Teddy. There was no talk about Teddy being called home to be with Jesus. There was no talk about Teddy being in a better place. There was no talk about Teddy earning his angel wings. You know I appreciated all of that so much. Angel wings on a kid makes me fucking sick to my stomach. I guarantee no child wants to “earn,” their fucking angel wings. Angel wings should be reserved for the rights of people who have lived a very long life. I can handle angel wings then. Angel wings on a child is just another something our bullshit society created up to make it seem liked the death of a child is a-fucking-o.k. Such bullshit. After Teddy’s day ended, Macy and I gave our hugs goodbye and headed out. My eyes were so blurry from crying so hard that the only way I made it to Macy’s car was by my arm being looped through hers. I was so glad she was there with me. She is the only one I wanted by my side. Macy is not just my dear, sweet, best friend, Ronan. Macy is my sister. Macy is family. I’ve always known this, but Sunday really proved it. She sat there with me, the way she sat at your service and has never left my side. Time and time again, Macy goes above and beyond for me and our family. I am so, so, so, very lucky to have her in our life. I cannot tell you how much of a gift she has been to all of us. I love you, Macy. Thank you for being my everything.
We spent the rest of the night trying to recover from our day. My mind kept going back to Teddy’s mom, dad, and sweet brother Leo. I am heartbroken for them all because I have a good idea of what is to come and it is not pretty. Living a life everyday without your child is the hardest thing on the planet to do. I would give anything for them not to know this pain. I was blown away by the strength they all showed on Teddy’s day. I know that in the end it will be Teddy’s love that will get them through this the exact same way your love is getting us through our own horrific nightmare. It’s the only way one goes on after something like this. The love they have for Teddy and the love he has for them will always be there and will help them through their darkest hours which will never end. Your pain over losing a child never goes away. It will live on with them forever the same way their love for one another does. Pain and love will forever go hand in hand. As Macy and I were driving in the car we had it on some random radio station. You favorite song came on, “Keep on Rocking in the free world,” by Neil Young. I smiled when I heard it as I always do and pictured you dancing around to it. The next song that came on was “Somebody I used to know,” by Goyte. I said to Macy. “Did you hear that?! Ronan’s favorite song and now Teddy’s!” There had been much talk earlier that day about how much Teddy loved that song and used to make everyone at the clinic dance to it as he would play it over and over. I don’t think that was a coincidence, Ro. I think that was your way of telling me you and Teddy are together, riding trains with your light sabers. I’m just sorry it has to be somewhere else and not down here where it should be. We spent the rest of the evening curled up in Macy’s bed watching episodes of, “Girls.” We both were in desperate need of some laughter and knew that one of our favorite shows, would do the trick.
The next day we had a date with Lynne from Lucas studios. It dawned on me that it might be hard to go back there since the last time we were there it was with you, but of course I pushed that aside because once again I thought, I can handle this. Macy drove us and as we pulled up to the parking lot I felt my stomach drop. We parked and both looked at one another. Uh oh. I knew this was not going to be good. Macy’s eyes were full of tears. We were parked in the same spot that you had chased her around with your light saber. I did my best, “Come on! We can do this!” talk as I pushed back my own tears. She said to give her a minute so she could compose herself. I led the way past the little walkway where I could so picture you running and hear your laugh. We made it past the Master Yoda foundation where we posed for countless photos. I took a deep breath and opened the doors to the inside world where I had spent one of the best days of my life with you. We checked in and went over to wait for Lynne.
I sat down and Macy sat down in front of me. I started sobbing.
Me- “I can’t look at you right now. Fuck! Stop looking at me, you’re just making me cry harder!!”
Macy- “You stop looking at me!
Me- “I’m not looking at you! You’re looking at me! Oh my god! We have to pull our shit together! We can’t be hysterical when Lynne gets here!”
Macy- “I don’t know if I can! I can’t stop crying!”
I had your favorite Star Wars guy in my purse because I take him everywhere.
Me- “Here! I brought Captain Rex. Focus on Captain Rex! Deep breaths!”
Macy- “O.k. Captain Rex. Focusing on Captain Rex.”
By the time Lynne got to us we were much more composed. But of course we both ended up wiping away more tears in front of her when we told her that we had been there with you. She could not have been sweeter and said that she had thought we had taken you to the ranch and not the studios when we came for a visit. She then gave me a big hug and told me she was so sorry. I smiled and told her thank you, that we would be alright. We spent the next couple of hours with Lynne, walking in all the little places you ran around and grabbed a bite to eat with her as well. It was hard being there but I was so thankful for getting to spend some time with someone I’ve been wanting to meet for a very long time.
I’m on my way back to Phoenix now. I’m tired. I feel like I’ve been crying for weeks but I also know that it was a release I very much needed. I am so glad I went on this trip to honor that little boy who will remain in my heart, forever. He touched me in such a way, Ronan that I cannot explain. While I was sitting at his service, staring at his pictures I said in my head, “Teddy. I promise to fix this for you, too. I promise I will not stop until things get better.” I won’t break my promise to either of you. Do you know what else I thought, Ronan? I kept thinking If President Obama or some other big wig politicians were sitting in this room, listening to the story about this little boy’s life and all he had to endure, I am quite certain that childhood cancer would be at the top of their priority list. Without a doubt, they would want to fix this problem. How can I make that one happen? Then my head of course went to the most dramatic place possible which was me living in front of the white house, in a tent, with bald headed, beaten up and bloodied baby dolls lining the gates of the White House with IV poles and vomit everywhere. Then I remember Poppy and your brothers. Fuck. I don’t’ think they would do very well, living out of a tent with me. There has got to be another way to make our President listen. I just need to figure out what exactly that looks like.
I’m landing soon. I cried as I left San Francisco. I kept thinking of you and that video I have of your from our trip here with you. “Bye Macy!!!!! See you soon!!!” you squeaked in your little voice.
Goodnight, Ronan. I miss you. I love you. I hope you are safe.
xoxo

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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!

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.

Sparkly stars in the sky and all the one’s right before my very eyes

These are the kind of friends I have. The kind who come over to your house in the morning, bring you coffee, insist that you give them your car keys so they can go wash and put gas in your car. Not to mention pick up your prescriptions, some pictures you had developed, all while you put up a fight in which they were not having. The kind of friends whom stop by, bringing their sweet little boy with them to play with Ronan and insist on you giving them a list. The new friend, whom you have never met before, but is dying to be a part of our lives because she and her family have been so deeply touched. The friend whom lets me drop my crew off to play with her crew while I went to my therapist. The friend who let me rant and rave all while agreeing with me that this is bullshit, and she knows because she has lived through it. The friend who drops off boxes on your doorstep so you can try to pack up your life and send it to New York. This all happened today; these amazing woman helped me though today without me even having to ask. I don’t know how I got so lucky. Thank you, Melissa, Gay, Tiffany, Pam, Stacy and Bethany. You all will really not let me fall, no matter how hard I try.
Today was busy indeed. I had a mild meltdown on the way to see “The Good Doctor.” A panic attack, an almost nervous breakdown… I had to call Marisa on my way so she could rationalize everything for me. I don’t know how I made it to my appointment without getting in a wreck. But I did. The good doctor took one look at me and knew I what a mess I was. We went over my prescriptions, the doses, and we had a short but productive talk. I felt a little better after leaving there, but my nerves were shot. I am doing my best but this week has been especially hard. I have been trying my hardest to enjoy my time with Liam, Quinn, and Ronan but the littlest things put me on edge now. Any little argument between my boys is enough to make me want to lock myself up in an insane asylum. My patience is worn thin and I have the patience of a saint. I am struggling with trying to be a normal mom…. whatever that may be. I just want to be the mom I was before all of this but is is so hard.
Woody came home and I slipped out for an hour to meet a friend for dinner. Just what the doctor ordered. We sat outside, ate good food, and the weight of the world seemed lifted off of my shoulders for the hour that I was there. I found myself laughing, enjoying our conversation, and it was just very easy, as it always is. The stars were shining so brightly tonight, I kept looking up to see if I could see a shooting star to make a wish on. I then decided I didn’t need a star, because one of the most beautiful stars was sitting right before me. I made a wish on my friend, the same wish I make 50 times a day. It made me smile. I came home feeling much better about things. It’s funny how certain people just bring out the old me, the funny me, the happy me. The me that is buried so deep down, but when she comes out I so enjoy being her. Tonight was something I very much-needed. An hour of pure bliss and happiness.
Ronan is still in a lot of pain. It’s absolutely killing me as there is nothing I can do. I mostly sit and try to comfort him, get him to take his pain medication, and try not to throw up at the thought of him hurting so badly. I sit back and wonder what it feels like for his little arm to hurt so much. Does it feel broken? Does it burn? Does it throb? However badly it is hurting, I know it is intense. He never complains about a thing and watching him with this is like daggers in my heart. I cannot wait to get him started on Monday for his next round of chemo. I never in my life would have thought I’d be so happy about getting back on his magic medicine but I cannot stand to see the pain he is in. He needs it badly.
New York is going to be good. And I am going to be good once I get there. It is my Ro baby’s city that is going to heal him; I just know it. We are going to get there, get into our routine, and get him better. I know he is going to respond well to his treatments; I have all the faith in the world. New York really is a magical place and I honestly feel that energy when we are there. We always do so well and we can do this. We will do this while refusing to let go of the rope we are holding on so tightly to. We are just going to keep tying knot after knot so we can keep hanging on. We are never letting go of our rope and I am never going to let Ronan slip and fall. I will hold on to him for the rest of my life and I will be thankful for every second of it. I never knew how precious life really was until all of this. It all seemed so trivial to me…. just another day in the life of Maya Thompson. Now I know how precious our time here on earth really is because I am watching my 3 year old fight for it every second of the day. It is so wrong, so sad, but so inspiring. Ronan has made me realize that my time here is meant to change the way certain things in the world work. He is laying out a path for me and I am not sure where it is going yet…. but I am going to keep following it until I figure it out. I love him so much. My sweet little seal.
Tomorrow, we have the clinic visit for blood and possibly platelets. We will say our final goodbye’s for now, but not forever. We will be back to see our angels at PCH soon. Ronan will be back and feeling much better:) Cannot wait for that day. Fernanda is going to come to the clinic with me to work on some things. I.LOVE.HER. so much. I swear she could rule the world. Beautiful people everywhere and I never even knew it. Thank you to all of you who are keeping up with Ro and his journey. We are so thankful for the love you send his way. Someday, when this is all over and Ronan is well, we will have a big party and all 264,578 whom are reading this are invited:) Wouldn’t that be amazing?? I am totally going to get Eddie Vedder to throw a Charity Concert for Ronan. Or Tom Petty. Or Neil Young. Or all of them combined. How awesome would that be?  Mark my words. Done and done.
Goodnight to my dear friends, old and new. <3 Goodnight to each and every one of you. Love and blessings to you all!!!!
xoxo

Because I’m still in love with you

Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.

My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.

I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.

I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.

Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.

Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.

Coldplay : Green eyes

Honey you are a rock

Upon which I stand
And I come here to talk
I hope you understand

That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you

I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you

Green eyes

Honey you are the sea
Upon which I float
And I came here to talk
I think you should know

That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind

Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you

Green eyes
Green eyes

Ohohohohooooo
Ohohohohooooo

Ohohohohooooo
Ohohohohooooo

Honey you are a rock
Upon which I stand

P.S. After 12 years of being with Woody, he still to this day, ALWAYS, opens the door for me.

G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.

Feathers, Glitter, and all things Sparkly

 

 

 

Today was a very productive day. My sweet, dear, Fernanda stopped by for a coffee drop off and a visit. She went over my “To do” list with me and helped me decide how to tackle it. We also talked about our little project we have in the works… she has an amazing business mind. More on that when we are further on down the road. Let’s just say the two of us, when Ronan is well, are going to change the world and make the most amazing things come out of this. It is a good, heathy distraction for me right now; something I am very excited about and I am so honored to have Fernanda by my side <3 It’s so amazing to me, how you know someone through the years, and then something like this happens and your relationship either truly blossoms or bottoms out. Out of this, I have found a very special friendship that had always existed, I just never knew it until now.

After Fernanda left, one of our angels who writes on my blog a lot, but I have never met before, came over to help me out with some things. My new friend, Rita, came and did the mounds of paper work that has been looming over my head like a dark cloud. It took her around 3 hours and I am so grateful for her and her organization skills. There is no way I was going to be able to tackle that project this week. My mind is all out of whack and paperwork is something that has become totally overwhelming to me. Thank you so much, R. You saved my life today:) And Ronan loved having you here! I can’t believe how openly he welcomed you into our home. I am very thankful for that.

I cleaned out our pantry, caught up on all of our laundry, paid some bills, and cleaned and organized all of Ronan’s toys. If I leave here with things like that not being done…. I will drive myself crazy thinking about it. Stupid OCD. I will feel so much better going to New York and knowing that everything is organized and put away where it is supposed to be.

Ronan was a happy little boy today. He did a lot of playing by himself while I got things done. He snuggled up in my arms and we took a good nap together. Snuggling with him is one of my favorite things in the world. He fits so perfectly in my arms. Liam and Quinn came home from school and spent it playing with Ronan. I am trying to let them soak up their time with him as much as possible. They are such good big brothers. I am so excited to spend Christmas with them in New York. I have not done a thing as far as Christmas shopping goes this year. All of the gifts, cards, “stuff,” just seems so meaningless. Woody came home all excited about the gift he has gotten for me and I didn’t mean to burst his bubble, but I told him I didn’t want anything. That is not true; the only thing I want this year is the best doctor in the world operating on my baby. And he already got me that. I couldn’t ask for more at this point. I know I am going to have to get some things for Liam and Quinn, but I think I’ll leave that up to Woody. I can’t focus on stuff like that this year. One of my most favorite things about Christmas is sending out our annual Holiday Card. Not happening this year. Makes me sad; but I’ve got bigger fish to fry. I’ll send you all one on my blog, how bout that;) Think of all the trees I’ll be saving!!

We have a pretty good plan in place for New York. Woody, my in-laws, the twins, The Kotaliks, My mom, my oldest friend, Sandy, whom I have known since I was 5, and Tricia will be coming in and out. Trish and my mom will be with me on my birthday<3 So happy about that. I’ve got a few tricks up my sleeve as I always do as far as ways we will celebrate once Ronan’s surgery is successful. One of them involves glitter… and lots of it. I’m obsessed with anything sparkly and glittery and I used to be a very fun girl. I’ve been thinking of ways we can celebrate and make this milestone something to remember in a very positive, fun way. Trish and I went shopping for hats to wear in New York and I bought a silly feather white feather headband to wear on New Year‘s Eve. Who cares if we’ll be at the Ronald McDonald house…. we will still have sparkles, glitter, and feathers galore. This is our journey and I cannot wait to say goodbye to 2010. Remember how I told you about “Earmuffs??” Or maybe stop reading here….. You know what I’m going to say to 2010?? Adios Mother Fucker! Worst year of my life. 2011 is going to be all about getting Ronan better and healthy.

I heard “Iris” by The Goo Goo Dolls on Pandora tonight. It made me think of Ronan. Cheers to you, baby boy.
And I’d give up forever to touch you
Cause I know that you feel me somehow
You’re the closest to heaven that I’ll ever be
And I don’t want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it’s over
I just don’t want to miss you tonight

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

And you can’t fight the tears that ain’t coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

P.S.  I totally heart Neil Young and  Johnny Cash. They bring me peace and sing us to sleep every night. Goodnight to all of you beautiful souls out there. Wishing you all health, peace, and happiness. Love you ALL. So thankful for all of you and how you are always keeping us in your thoughts and prayers. Ronan is a fighter, there is not a soul out there like him. I PROMISE you, he will get through this. I can feel it in every fiber of my body and soul. And through this journey, I’ve come to find out how true and right my insights are in regards to my life. I BELIEVE.