Tag: Nana

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

Like a Little Million Stars Spelling out your Name

Ronan. Just when I think I have a handle on something…. like my sleep, turns out I’ve spoken too soon. This sleep thing, for the past week has been awful again. I can’t unwind, when I do, I toss and turn, or just can’t fall asleep. Tonight was awful. My body is so tired that literally, everything hurts. I swear even the strands of my hair. Your Daddy was trying to get me to unwind, but I was hurting so badly, I couldn’t lay still. I sat in bed with him and just cried while he did his best to comfort me. What did I do? I pulled away and said things like he promised me he wouldn’t let you die, that everything hurts too much, that Romeo died with Juliet so why couldn’t I die with you? I am pretty sure my pain, of losing you, is way worse than their’s was. I got up, rambling something about needing to break a window. Your Daddy followed me and grabbed me to because I think he really thought I was going to. It started to storm out really hard. Quinn ended up in our bed with us, sobbing like a little puppy dog because he said he misses you. I just held him and cried too. It was all I could do. Your daddy was the one doing the talking. He told Quinn things like he bets the storm was your way of telling us, not to be so sad. I think it was your way of telling us, that you are so sad too, because you miss us so much. My head is spinning thinking of the ways we all miss each other now. Of how we were never supposed to be apart.

My body is now so tired that it just won’t sleep. I’m past the point of tired. Can somebody just shoot me in the head? Oye….. started that last night, Ro. Guess I was not in such a good place. But when am I? That’s why nights like tonight, are necessary. For as much as I want to hide and avoid people, it’s nights like tonight that show me that I cannot. Because I am capable of having a slightly good time. Good time may be pushing it, but Ro, it felt better than my nights have felt in a long time. I’ve been really good at not doing anything with ANY of my girlfriends. No more movie dates, dinners out, etc.. Nothing. Not a thing. Well, I threw a little something together, last-minute to try to break up this rut I’m in. I saw that there was a Roller Derby tournament going on tonight. You know me and my big mouth. I have blabbed about this Roller Derby thing since before you were sick. I have had your Papa Jim all psyched up about it, saying he’d fly all the way here, to watch etc, for two years now. I acted all tough and badass and told him I was going to try out. I had your Nana all worried, because she thought I was serious. I had a plan, and I was mostly kidding, but I continued on talking about it because I just couldn’t let it go. And your Papa Jim and I loved seeing your Nana all riled up; upset that her little girl, could possibly get hurt doing something so crazy like Roller Derby. Then you got sick. And all the jokes stopped. And all the teasing stopped. Nothing was funny anymore. Life became……so serious. So much more serious than I ever though was possible.

When I started looking into the Roller Derby thing again, I thought to myself, this could actually be really good for me. I really think this is something I could check out. What a great way to get some of this aggression out. So, I decided to grab a couple of girlfriends, to go and watch. A night out? Yes. It’s time. A night out with just a couple of girls, is way overdue. So, I asked my new friend, Mandy Bee to go with me. She’s from Canada, Eh, and we seem to have some sort of connection. Oh yes… this little Mandy Bee. The one who drops bags full of candy off for me as well as kick ass leg warmers. The one who stalked me and I liked her from the second I laid eyes on her. The one who cusses like a sailor and has a dark side which sings to my soul. This new little Mandy Bee of mine feels like someone who I have known in a past life or something. I like this girl. A lot. I asked her to come with me. She was game, right away. I also asked my dear friend, Melissa to come as well. My dear Melissa whom I never get to spend time with, but she is someone I always want to be around. She makes me feel safe. And sad. And happy. And it feels good to be safely sadly happy, around her. Because she knows. She sat with us so many days at the clinic. You used to laugh when her cell phone would ring and chirp like a bird. She loves you. She misses you. She’s never gone away. She hadn’t met Mandy yet. I thought the 3 of us, together, would make a good team. I was right. Melissa picked us up at our house. We hung out for a few minutes and then we headed out to the West Side of the Valley. The chatter was easy in the car. Honest and true. Just the way I like it. A little dark too. We got to the Roller Derby Rink. Lots of tough looking girls skating around everywhere. We found some seats and got up to talk to some of the Roller Derby girls in the booth behind us. We threw lots of questions their way. Turns out, every Wednesday, you can come and get familiar with what exactly goes into this Roller Derby thing. Turns out, every Wednesday, they have try-outs. Radness. Mandy and I locked eyes. Sign us up, please. Melissa laughed and said she would come and watch. I told Mandy, after this Fashion Show awesomeness, you will find me on the rink. We shall see. What have I got to lose, Ro? NOTHING. What have I got to lose, if I don’t try this out? Regret. Regret is an awful thing to be chained down to in life. I won’t do it. I want to try this, so I think I will. Go Big or Go Fucking Home.

After we watched the match, which is totally confusing by the way. They really have a strategy down, those girls. It’s not just girls in badass outfits, skating around, pushing and tripping each other. There is a reason behind the madness. I wonder if those girls, have a reason behind their madness, like me. I’ll bet not. I’ll bet nobody’s reason behind their madness is because their almost 4-year-old, died of cancer. I have a feeling, I’ll be solo on this mission. It’s o.k. I like being the lone wolf. I always have. I work best this way. So, Ro. After the match we headed out and decided to grab some dinner. We stopped at St. Francis to grab some food. I was wearing my purple F U Cancer sweatshirt and as we made our way through the restaurant to sit outside, so we didn’t have to wait an hour and a half to be seated….. a lady at a table yelled at me that she liked my sweatshirt. I told her thanks and she asked where I got it. I told her my friend had made it for me. She then told me that her sister had just been diagnosed with Breast Cancer and that she would love my sweatshirt. I told her then she had to have my bracelet and I took my Fuck You Cancer bracelet off of my arm for her. She read it and looked up at me, smiling. I knew I was going to have to tell her, about you. So I pulled out one of my little cards, with your picture on it. I started to explain your story. Then man next to her, interrupted me. “What was your son’s name?” He asked. I simply said, “Ronan.” His eyes welled up with tears and he stood up. “Oh my goodness. I am (crap I cannot remember his name) the Chaplin over at The Ryan House. I have prayed for your family, since I heard about Ronan. I’ve read your blog. FUCK YOU CANCER!” He grabbed me for a big hug. “I’m so sorry about Ronan.” My heart sank. But my heart, also fluttered too. The Chaplin of the Ryan House, just said, “Fuck You Cancer!” It totally made me laugh. We stood and talked for a few more minutes. The girls and I then went to sit outside to enjoy some beers and food. YUM. Beer, Food (I ate!) and new and old friends. It felt good just to be sitting outside, on a crisp night, with this new friend of mine and this old friend of mine. And to watch the way the 2 of them, got along. LOVE. LOVE. LOVE, Ro. You know how I love to watch relationships form. It’s like a science experiment to me. The 3 of us, mesh well together. The night ended around 10:30. Your little stalker brother, Quinny, was getting worried. That’s the new nickname, I’ve given him. I was supposed to be home (or I told him I’d be home around 9:30) When the clock turned 9:31, I looked down at my phone and had 8 missed calls from him.(or so we figured out after about 15 minutes of us girls freaking out that 8 missed calls had come from some creepy unknown phone number( our house phone which I don’t even know the number to because we don’t use it) Turns out, it was Quinny, wanting to know where I was. I told him I would be home soon. I then gave him the nickname, Little Stalker. I thought that was pretty PG rated of me. It could have been Little Fucker. The girls and I laughed about the phone thing, forever. It felt nice.

Ro baby. Started all of this a couple of days ago. It’s Sunday Funday now. Or Sunday I Fucking Hate you day. Except today, wasn’t a bad day. I was gone all day, helping out with Fashion Show things. It’s this week! Can you believe that, little man? All because of you. Bittersweet to say the least. But we are doing everything, just the way you would have liked it. Just the way, you would have rocked it. If only you were here, to enjoy it. I so thought you would still be here. Remember how I thought we would still be going back and forth between New York and here? How I was so ready, to pack up my life, to live with you in New York? How I wasn’t scared because I knew the two of us would be together so that was all that mattered. How New York, quickly felt like our second home. As if we had lived there together, in a former life. Remember how we used to spend the days, roaming the streets, not caring that you had cancer because we knew New York was going to heal you? It was going to save you. How the fuck were we so wrong?? How did that not happen, baby? I’m so sorry, Ro. You know I would give anything to change this. I miss you so much. My whole heart feel like it is missing, without you. But I’m still here, fighting for you. Because as I told Michael Dee, Sarah Love and Heather while they sat in my kitchen last week…. what choice do I have? You, Ronan Sean Thompson came into this world, kicking, screaming and crying. I had to watch you leave this world, silently. Not being able to do any of those things because cancer robbed you of that. So now I am fucking left here; and it is my job to kick, scream and cry for you until the world starts to listen. Until this little army of mine, turns into a REALLY FUCKING BIG ARMY and Childhood Cancer starts to get the attention it deserves. Because I refuse to just sit back and watch as these poor innocent children are fucking MURDERED before our very eyes but nobody cares. Because it’s not their child, right Ro? It may not be their child but what if it is someday?? Or what if it ends up being their grandchild or cousin or niece or nephew or Godchild? What assholes, will all these people who have chosen to IGNORE Childhood Cancer, feel like? Fucking Douchebag Assholes, I’m sure. Guess what Ro? I know a whole bunch of people who did not even know you, who DO NOT want to be Douchebag Assholes. They want to help. They want to be a part of something because they know this is something REAL. In a world full of SO many FAKE PLASTIC TREES. The Fake Plastic Trees in life will only get you so far, right Ro. The Fake Plastic Trees will leave you with an icky taste in your mouth that will never go away. No matter how often you CHOOSE to look away. Because guess what Douchebag Asshole People???? Now that you’ve read these words….. It’s a CHOICE now. You CHOOSE. I hope you can sleep well at night. With his big, blue eyes, piercing into your soul. Because they are that life changing. And trust me. I now know a lot more about life, than I ever hoped to. And I had to learn the hardest way possible. As of now, you DO not. So fucking do something. Or do not take his gift. Go on. Carry about your days until you Louis Vuitton luggage, becomes too heavy and your Xanex becomes to weak to numb your pain. Are you still going to look the other way????? That makes me sad. I’m so, so very sorry. Ronan deserved to be here. Do you?????????? If so, make it worthwhile. Because to be any other way, is just not enough. And I know deep down, we all want to be more than enough.

Um, Hi, Ro. Are you still there?? I’m sorry baby. I think my post got hijacked by Inca tonight. Apparently, I had a lot to say. I’m not even sure what just went on up there. Oh well. Fuck it. Most of the time when I write to you, I feel like I’m having an out-of-body experience. I feel like I get so lost in my writing that I am watching from above, while I’m really off somewhere else, playing with you. I love this time, so much. I’m sorry it has to be this way for now. I am trying so very hard to do this. To make you proud of me. You push me and you give me strength. You are a gift to me every second of my life. I love you. I miss you. I hope you are safe. Sweet dreams, little one.

xoxo

This is now on the John Lennon Wall in Prague thanks to the raddest girl who has ever lived in NYC. Miss Rachel Goldman. Thanks Dolly. You made my day with this.

xoxo

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CT– MIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!