Tag: Pacific Northwest

Cancer is a whore. My friend, Robyn, told me so.

 

Ronan. I am tired. Living this life without you is exhausting. I hardly remember the days when I used to think you wore me out due to your never-ending energy. I used to think taking care of you was a lot of work. Well, let me assure you, taking care of a dead child is 100 times more exhausting. It is 100 times more exhausting than the temper tantrums, throwing up, crying, teaching, arguing, potty training, bathing, feeding, reading, singing, playing, snotty noses, laughing, loving, and all the other beautiful things that come with raising a child. Taking care of a dead child is 24 hours of pure and non-stop torture that on days like today, leaves me feeling more exhausted than running a fucking marathon.

We are still in Washington. I do well here. It’s no secret. My heart is not in AZ. I won’t live there forever. There will come a day when I will leave. Your daddy knows this. He is on board with this. He will go wherever we decide to go, as a family. I’ve already thrown out a few places as options. It’s a decision we have both made. My heart does not belong in that state. It never has. I have only a couple of things keeping me there, as of now. But those couple of things mean too much to me to leave. As long as they are there, I will stay there. I’m not saying what or who they are, but I know you know. Because you’ve always known. Right now, we are there because it is where we need to be. Because right now it is what is best for Liam and Quinn. I can put myself aside for the sake of the two of them for the time being. I can sacrifice myself for those boys’ no questions asked. But Phoenix leaves me feeling restless and chaotic. The only peace I get is when I am hiking up a mountain in 110 degree weather. That tells me right there, that there is a problem. I know what my main problem is… that being not having you anymore. But Phoenix only seems to add fuel to the fire. I can make due for now. I can be thankful that we have your Nana’s house to come to so that I can have a little peace and quiet. I can be thankful for things like rainy summer days, scratches from sticker bushes, muddy feet from exploring the never-ending rivers/streams/ponds that surround us… I can be thankful that your brothers have this place to come to, to experience childhood the way it should be. Simple, calm, and beautiful. You don’t get much more beautiful than this state. I have always thought so. It makes the 8 months of rain, totally worth it. But I am also a big fan of the rain so I may be biased. I am an even bigger fan now because I feel like my body and soul are in a constant state of rain due to all of my tears. It’s nice to not wake up to the blinding freaking sun every single day. The mornings here are damp and foggy. The air is clean. The sun comes out just in time to kiss my lips for a few hours and then it goes back to sleep. My heaven.

I’ve been doing a lot of playing with your brothers. So much playing that we are all 3 falling into bed and we hardly have the energy to say goodnight to one another and you, before it’s lights out. That never happens in AZ. It’s been a constant stream of baseball, board games, swinging, basketball, and Papa time. That Papa time is my favorite time of all. Your papa and I took Liam and Quinn to Mount St. Helen’s yesterday. The world that I watch Liam and Quinn slip into around him is magical. It’s one of my favorite places to be. The laugher and adventures are endless. He is the youngest 72-year-old that I have ever known. It’s like I’m watching 3 kids play whenever I am with him. He was one of your best friends and vise versa. He misses you so much. Yesterday, when we stopped to explore a little bit, we were throwing some rocks into the water. There were a ton of sticks and wood pieces floating around. The kind that you used to make your papa load the back of his truck up with. “More papa, more!” you used to yell to him. We would always bring home 10-20 pieces of wood and sticks for you. Your papa found a really good one yesterday and said, “I’d better get this one, for Ronie.” “Ronie, Ronie, Macaroni!” he would often sing to you. I just looked at him and said thank you. What I really meant was thank you for being the best step-dad ever. For being the best papa ever. For being the best friend to my 3 boys. For never forgetting you, Ronie, and for never being afraid to talk about you, sometimes like you are still here. I know how hard this has been for him. He loves you so much. He would have traded places with you, in a heartbeat. I know he is constantly asking himself why you and not him. We all are baby boy; we all are.

I think about you all the time. I told your Sparkly that I swore I think about you, 24 hours a day. He said he knew. I know he knows this because he thinks of you everyday too. He misses you. I have been thinking about a lot of things lately, trying to give myself some peace of mind which won’t ever happen, but I need just a sliver of it, to get me through this. For me to say that I 100% know where you are, who you are with, and what you are doing is something I am not willing to eat up on a plate of bullshit. Hello! Am I the only crazy one out there, who will admit this?!! NOBODY REALLY KNOWS where you are, Ro baby. WTF! I can fully respect what people believe… but I am so tired of hearing, “Oh, hello… I am 100% sure of where Ronan is. He is safe and happy and he is where he should be. ” Fuck off people. That is not the right way to approach me. Why don’t you just be honest and say, “Oh, hello… I don’t 100% know where Ronan is, but this is what I believe.” Thank you. I can deal with the “I believe part.” I don’t have a problem with the “I believe part.” I won’t even tell you to fuck off. I will politely smile and tell you thank you, instead. I just want some freaking honesty. Is that too much to ask? I don’t think so. Unless you are officially hanging out in heaven, with Ronan, dancing on clouds and then you get to come back here and tell me about it, and put it on a DVD for me to watch…. I am not going to 100% be sure of anything. That’s honest. That’s real. It fucking sucks but I am not willing to sugar coat the life and death of my child just because it makes other people comfortable.

I know what I think I believe. I know what I think I don’t believe. I know that I am still learning and growing, but no matter how angry I get, I still have a shred of faith that I hold on to. It’s dear to me no matter how different or how out of the norm it is. I don’t like normal. I grew up with a dad who used to mediate on top of compost piles. Is that weird? Maybe to some. It wasn’t weird to me. It was his way of teaching me to love nature and the world around us, but mostly to connect to ourselves, our hearts and our spirituality. I know that my beliefs are ever-changing and ever-growing. What I believe today, may not be the same, tomorrow. I find that fascinating and it makes me proud that I have the strength to question everything out there when I could easily just believe in it all, instead. If I want to question if the sky is blue and the grass is green, that is my business. Nobody has the right to try to take that away from me. Not even God himself.

I found a picture of you today, Ronie. I don’t know if I’ve ever called you, Ronie, on here, P.S. Which is weird… because I used to call you that all of the time. Anyway, it was your preschool picture. The one where I can vividly recall the day so well which is unusual for me due to not having much of a memory anymore. You are so beautiful. I put you in one of your favorite orange shirts. Your hair almost matched it in the picture as the color of your hair was so unusual. A copper color almost. Blonder in the summer, but copper was the true color of that mop of hair of yours. I stared at that picture for a long time, before tears sprang to my eyes. I sent a couple of text messages to Dr. JoRo and to my new friend, Robyn. I haven’t really talked about Robyn yet because it just hasn’t been the right time. It’s only been within the last few weeks that we have started to get to know each other. Even though we have more in common than I would like. We both have dead babies thanks to that fuckwad, Neuroblastoma. We met at the NB conference in Austin, Texas. We went out afterwords as a group and I quietly sat back and watched this girl who continued to crack up the entire table with her witty comebacks, smart mouth and silent gun shooting laughter (because she says no sound comes out when she laughs so she shoots guns with her hands instead) Ummmm… who is this girl and can I please be her friend? I got to know her story a bit. I later learned that she not only has one dead child, but two as she had twins after her son, Ezra, and one of them, Price, died due to complications from a very early delivery. It took me a while to wrap my head around this. Wait, two dead babies? Her? Not possible. Not this drop dead gorgeous, funny, young thing sitting right in front of me. Not this gorgeous creature who looks like she is about 19, but has the pain in her eyes of someone who is 3 times her age. But she looks happy. And she can laugh and be carefree and funny! All of the voices in my head were saying, “Whoa. What’s wrong with you? This girl is alright. This girl can function in the normal world. And she has 2 dead babies! Why can’t you?” I left Texas being totally intrigued by this Little Miss Robyn thing. Our friendship has now developed over a series of Instagram/Twitter/Facebook/Texting love. I told her that it had to be the two of you, you and Ezra, who are the one’s making our friendship blossom. Because you know we can help each other, through this. I truly think this is the case. Now that I’ve gotten to know Robyn a little better, I can see that she still hurts so badly from losing her babies. That I know she thinks about them as much as I do you. That will never change. Things will never be alright or better. They are just different. And somedays, different can be o.k. and you can still smile and laugh, but the pain never fades away. As she puts it, it moves from your skin to your bones. It never goes away. I sent Robyn that text below tonight. She called cancer, a whore! I told you we were meant to be friends!

I think we are going to make a good team, me, you, your daddy, Robyn, Ezra and her husband, Kyle. I kind of think that Neuroblastoma, doesn’t really stand a chance. I am sorry that any of us have to know this life. I wish it wasn’t this way. Robyn says to tell you, “Hey,” though. Thank both you and Ezra, for helping us find each other. Please be sure to get into some trouble together. I’ll bet you are the best of friends.

I’m ending this novel here tonight, Ro baby. Much to say still but my eyes are red, blurry and sleepy. I miss you. I love you. I hope you are safe. I am always so sorry. Sweet dreams, baby boy. And of course it is now pouring down rain with a side of extra angry, thunder and lightening. Thank you. I hate being apart from you, just as much as you do.

xoxo

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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

Adam Spofford owns a laptop. And meet Gary.

Ronan. A few things have happened since I’ve last written. I’ll start with Gary. Gary the stuffed animal that I bought for you in Starbucks. Gary who I didn’t tell anyone about, except for Dr. JoRo. I was waiting to board the plane with your Daddy and brothers. I was so sad. I didn’t want to get on the plane. I was sitting down. Quinn came and sat next to me. He saw Gary in my purse. He pulled him out and asked what he was and said he smelled like coffee. I told Quinn, that I had bought him for you. I said to Quinn, “Ronan would have liked him, don’t you think?” He smiled and said yes. I asked Quinn what you would have named him. I watched as Quinn got nervous and his little eyes started to tear up. He said he didn’t know. He didn’t want to answer me. He kept looking at the ground. I pushed him and told him just to think of the first name that popped into his head. He took a minute to answer me. He shyly looked up at me and goes, “I don’t know. Maybe Gary.” I thought I was hearing things. I said to him, “That’s exactly what I named him!” I grabbed Quinny’s face and kissed his lips. I told him I loved him. I took it as a sign from you, that I had to get on the airplane and go. During mid-flight, I could hear your daddy and Liam laughing behind us. They started handing us little post it notes that somebody had left in their in flight magazine. The post it notes said things like, “LOSER.” a game of tic-tac-toe was played. Hearts were drawn. But the best one said, “Adam Spofford owns a laptop. This is his laptop. It sucks.” xoxo- a friend. I don’t know why, but these little post it notes from a previous flyer, probably a 10-year-old girl, made us laugh. And trust me, we really needed to laugh. I made it though the flight. Quinn slept on me. Everything in my body hurt. The memories came flooding back of all the flights I taken with you and how sick you were. The memory came flooding back of our last flight together. How you could hardly move because you were in so much pain. I tried to push these memories out of my head. But they are here to stay. Forever. I know this.

We landed really late. Around midnight. It’s our first time to Nana and Papa’s, without you. Painful beyond words. But as I said before, necessary. Everything is so pretty. Nana made sure you are everywhere. Her tree is done up all purple just for you. Your stocking is hanging in between Liam and Quinn’s, just like it should be. Gifts bursting out of it. Your pictures are still all over her house, just as they have always been. Everything is the same, yet different. Nana’s house is perfectly sparkly, warm, cozy, and so welcoming. She has always been so good at this as I know, we are all her whole world. The house is full of laugher, despite you being gone. Not from me but from your brothers and Papa Jim. The never-ending goofing off and playing games that is going on is all too familiar. It’s just the way it has always been. I miss your giggles the most though. It is so obvious they are missing.

We drove to the beach yesterday to go clam digging. I slept most of the way as your Papa Jim drove us. I closed my eyes and thought of you almost the whole way there. I knew exactly where you would have sat, what you would have worn, the things that you would have said. The entire car ride would have been completely different. I know all of this. We arrived to the beach where we were greeted by the cold, wet weather. My favorite. I got out of the car and helped your brothers get all bundled up. We ran out to the ocean in our rubber boots. The tide was out really far and it was drizzling rain. I was playing with Liam. A small wave came chasing after us. A small wave that was much bigger than I had thought. We both ran but it caught up to us. I watched as Liam’s boots were flooded with water and he got soaking wet. I did as well. Within the first 15 minutes, we both had soggy boots and wet jeans. I laughed as I knew if you had been with us, you would have been drenched as well. I took Liam back to the truck and changed his socks but the damage was done…. once your boots are wet, forget about it. We toughed it out for the next hour but we were soon frozen. We headed back to the truck and watched as your daddy, Quinn, and Papa Jim dug for clams. They didn’t get a single one but it didn’t matter. It was all about the adventure and letting them make the happy memories they deserve. Our drive home was long. We played games in the car. I looked out the window and was reminded of why I love it here so much. There is something so peaceful about the Pacific Northwest. I decided that it was a really good thing, that we came here for Christmas. I needed to get away from the rat race of Phoenix. I needed a break. I needed some fresh air. I needed to breathe. I feel like I am suffocating in AZ. A change of scenery has been good, for as hard as I thought it was going to be….. it isn’t as bad as I had anticipated. We all needed this.

I spent this morning with your daddy. I think he was a little worried that we didn’t have gifts for your brothers. He woke me up early to get out of the house. I put up a fight about going out as I just wanted to stay in bed all day. I didn’t. I got up and showered. We ran into town. There are 3 choices when it comes to shopping in this little town. The closest one being Super Walmart. It was totally a Super Walmart kind of day. We roamed the aisles. I got mad. I got sad. I think I told him everything was stupid when I turned down an aisle and saw EVERYTHING STAR WARS. I walked off. I found some 3 wheeled bike in the middle of the bike aisle that was not attached to anything. It had an awesome basket on it. I started riding it around the store. I instantly felt better. Your daddy found me and gave me one of his, “What in the world are you doing looks?” I just smiled and told him I wanted to buy the bike. He knows I’m ridiculous and told me to come with him as he had found some things for your brothers. He led me over to the weapon aisle. Weapons. Now this is something I can get behind. He showed me some Airsoft Guns he thought they would like. You would have liked them too. I think they are kind of like bb guns, only safer. Maybe. I’m not really sure but they look like fun. I told him sure. Whatever. I started roaming the aisle for other treats. I grabbed a Machete and put it in the cart. Your daddy gave me the look again. I told him I needed the machete. He told me I indeed, did not need a machete. He told me to put it back and he would buy me my own Air Gun for Christmas. Fine I said. I put it back although I didn’t want to. I could have cut down a lot of wilderness with that Machete and protected us from the zombies that lurk about. When it Rome…….
The rest of the day was spent playing. I played outside with your brothers and Papa Jim. We played hide and seek. We played basketball. We played. I laughed. I cried. I missed you. I went into town and ran the lake. Tomorrow is Christmas. Fucking Fuck. I’m still here. I don’t think I’m going to die. I wondered this last night though. I wondered if the pain from loving you so much and missing you so much, will actually kill me. Or if the pain from loving you so much and missing you so much, will get me though this. Will it kill me or just make me stronger? I don’t want to be stronger. I don’t want to be strong. I just want you back.
I have to go now. Merry Christmas Eve baby doll. I’m so sorry. I miss you so much. I hope you are safe.
xoxo
And P.S. little lovely overly concerned blog readers. No. NO. No. I’m not going to go on anti-depresents. So stop encouraging it. If it works for you, lovely. But it’s not my cup of tea. I’m doing this alone. Solo. I don’t want any help from a stupid little pill that will not make my dead son, come back. If someone can invent a pill that will bring him back, I would take it in a heartbeat. Unless this is the case, I’m not interested. But thanks for your concern. Merry Fucking Christmas!

A winking kind of weekend

After a whirlwind of a weekend… it’s now just Ronan and myself snug in our bed. I don’t even know what went on this weekend except it was lovely. And a blur. We had a weekend full of non stop fun, laughing, eating, walking, crying, and fighting (3 boys, it happens). In other words, it was a weekend full of complete and utter chaos. Just the way it should be when you are the parents to 3 little men. We enjoyed our time together as a family and with Macy. The boys’ are over the moon for her and she was a godsend. She helped me out so much and has an infectious way of making everything better. Thank you, Mace. For everything. You have no idea how much it meant to have you here with me and my family. I love you so much.

Today was a little hard. Having everybody leave at the same time was sad. My Liam, who I tend to think deals better with all of this than Quinn, had a hard time leaving today. I may be wrong about him dealing with all of this better. He is more mature than Quinn, but all of this is still really hard on him. Macy, Woody and the boys were all upstairs in our room and we were getting ready to go downstairs as their car was waiting. I looked over to see tears pouring down Liam’s cheeks and he was saying he didn’t want to leave. This in turn made me cry, Macy tear up, and Ronan as well. I held Liam tight and promised him that he would be back soon. I tried to give him a pep talk about all the fun things at school that he was getting to go back to. How great it would be to get back to baseball, his friends, etc. I tried my hardest to be super encouraging and excited for him but all I was thinking in my head that was this was all bullshit. Bullshit that I have to be separated from my family, bullshit that we are going through this, bullshit that we can’t all be back in Phoenix together. Fucking bullshit and there is nothing I can do about it. So I lied through my teeth today and told my first-born how excited I was for him to get back to Phoenix, and how great everything was going to be. I wanted nothing more than to hop on that plane with everyone. But I have learned that getting what I want nowadays is not so simple. Everything I want, I cannot have. This is a hard pill to swallow when you are used to having it all.

After the boys left, I held on to Ronan tight as he cried. He kept saying that he couldn’t believe Liam and Quinn had to go back to Phoenix and that it wasn’t fair. I played with him and tried to distract him from the obvious. After a couple of hours, the two of us cuddled up in our bed and fell into a deep sleep for a few hours. I woke up first to my phone ringing and it was Woody saying they were waiting to get on the plane. I could hear Liam and Quinn in the background and I told Woody how sad we were. He said he was sad too, and it gets harder and harder to leave us. We said our goodbyes and I cuddled back up with Ronan. He woke up about 20 minutes later, full on sobbing about wanting his brothers. I talked him through it and gave him a really long bath to try to make him feel better. After his bath he looked at me and said in his squeaky little voice, “You make me happy.” My heart fell to the floor. He always knows the perfect words to say to me when I need it most. We spent the rest of the night playing in our room. We made a quick run to the store to pick up some food. Ronan has been eating non-stop which of course, makes me very happy.

This weekend I heard Ronan say at least 20 times that this was the best day of his life. It was beautiful and heartbreaking all at the same time. Ronan also learned how to wink and practiced the entire weekend on Macy. It is the CUTEST thing alive. To see my little boy, with a grin on his face, winking non-stop on a pretty girl. OMG. No girl stands a chance against Ronan at the age of 3…. let alone during his teenaged years. Macy got a big kick out of this as she cannot wink herself. It kept us all laughing and Ronan was so proud of himself. He told me tonight that it was a winking weekend. He is such a big flirt.

As much as I enjoyed our weekend together, I was also filled with a ton of anxiety. Scans coming up, my family leaving, etc…. As much as I tried to let go; I felt like the weight of the world was on my shoulders. Last night around 7:30 I told Woody I was going out for a run. He was happy to watch the boys for me and I was so thankful. I hadn’t run in over a week which causes me major anxiety alone. I headed out in the rain to do my usual 8.4 loop. Being from the Pacific Northwest, I wasn’t going to let a little rain stop me as running in it is one of my favorite things in the world. A little rain turned into a full on storm but I refused to turn around. It was raining sideways and Central Park was empty except for me, the crazy mama whose son has cancer. I thought to myself, “If I see another person running out here, their child must have cancer too, because nobody in their right mind would do what I am doing now.” That’s exactly how I felt. My anger pushed me through and even the rain slapping me in my face good. I’ve realized that I now crave any kind of physical pain. It makes me feel good to feel something besides the own pain that eats at my soul 24 hours a day. A break from the emotional pain of all this is something that I crave. It is my only escape. After I made it back from my run (slayer free, little M) I am not kidding you when I say I returned back to our room and had to wring my clothes dry as they were more than soaked. I looked like I had just jumped into a pool fully clothed and had about an inch of water in my shoes. But after all of that, I felt a release that I really needed. Even though I think my body went into shock after my run. It was a hard run at a fast pace and because my workouts are no longer consistent, my body knows it. After a hot shower and a lot of water later, I felt better. My sweet husband offered to run out at 9:30 at night in the same pouring rain to get me some things at Target. He took Liam with him and they grabbed a cab and off they went. They came back with new sheets, a duvet, a duvet cover, and a few other things for me. I looked at him, as he was drenched, sitting on the bed as I helped him get out the sheets so I could wash them, and I thought to myself, “What a good man. What other man in the world would run out in the rain at 9:30 at night to try to get me some things to make our place feel a little more like home?” Not one. Woody is seriously one of a kind. I’ve known this about him since our first date. It’s not often that someone ends up begin everything you could have ever dreamed of and more. I am thankful everyday of my life for that man.

Our place at the RMH leaves little to the imagination. We have spruced it up as much as we can, but it is a far cry from my home sweet home in Phoenix. I am still grateful though. I don’t know what we would do without this place. We are making the best of it and have done little things here and there. We pushed the little twin beds together and turned them into a king sized bed. The things like the Star Wars decals that a family sent us now decorate one of the walls. I’ve also turned on of the walls into “Ronan’s fan wall,” and have started to put up drawings and pictures that people have sent. This led me to an idea….. I know so many of you read this blog, and often times I wonder what your beautiful faces look like. I wanted to ask if you would take the time to send us a picture of yourselves so I can put it up on Ro’s wall. It brings such a smile to my face to know I have all of you cheering us on and I would love to be able to see what you all look like. I thought it could be a fun little project that Ronan could look forward to. He loves to talk about all of you, even though he doesn’t really get all of this in the grand scheme of things. I often just tell him how he has people all over the world, who love him and who are helping to get him better. He loves to hear this.

Alright my lovelies. We are finally getting somewhat sleepy around here. I hope you all had a beautiful weekend. Scans are on Wednesday and Thursday so keep our little guy in your prayers. He needs them and so do we. Sweet dreams.

xoxo

Magic Medicine, Day 4 and Day 5…. Round 7

What a beautiful, rainy day. My favorite kind of days. Being from the Pacific Northwest, I miss days like this so much. Ronan woke up happy as a clam, excited to know he was going home later this afternoon. We played in his bed for a little bit and then we went down to the cafeteria so I could get him his slurpee mix to put his oral chemo in. We came back to our room and talked to the nurse about discharge time and specific instructions as far as being back at the clinic tomorrow for the last day of cycle 7. Dr. Maze came up and sat with us for a while, played with Ronan, and we talked about the upcoming trips we are taking with Ronan to visit a couple of other hospitals. I had no idea, but his brother is the head of Anesthesiology at UCSF where we will be visiting on Wednesday. He sent him a message to let him know we were coming to the hospital to meet with Dr. Matthay. Ronan is excited to go to San Francisco and we have turned it into something really positive and exciting. I contacted somebody we were put in touch with whom works for Lucas Films. Lynne, has so graciously set up lunch on Wednesday over at the studios of Lucas Films and a little tour for Ronan. He cannot stop talking about going to visit Star Wars and New York Miss Macy, who just moved to San Francisco. It is going to be a short, productive trip. I am of course, over the moon about getting to see my love, Mace 🙂

I started this post yesterday but didn’t finish it last night due to falling asleep at 9:00 and sleeping all night long. It’s a miracle! I have not done that since before Ronan was diagnosed! My dreams were not even that horrific. I, of course, dreamt about Ronan and his cancer…. but my dreams were more peaceful than they have been in a long time. We went home yesterday around 3:30 and we are now back at the clinic for Ronan’s last day of this round of chemo. Liam and Quinn have the day off from school and Quinny is here with us while Liam is with Mimi and Papa. We will be finished here around 3 and Quinn is being such a good little helper. It was fun to introduce him to all of the people  here who are such a part of our lives now. He hears Ronan talk about them all day long and I think it was good for Quinn to put the faces that go with all the names. It was also good for Quinn to see what we do on a day-to-day basis while we are in the clinic. He likes to know what is going on with Ronan. Ronan is of course over the moon to spend the day with one of his brothers.

Fernanda came by the clinic and dropped me off a coffee (which I proceeded to knock over and spill) She called that, good luck. I of course chopped it up to nerves. I’m scattered today; nervous about meeting with the doctor in San Francisco. Dr. Eshun already told me that he spoke with Dr. Matthay and she is going to suggest we do MIBG treatment as soon as possible. I already knew this. Everybody is going to be biased in the way they want to treat Ronan’s cancer. But nobody really knows the correct answer. This is beyond fucked up to me. The fact that Woody and I are going to have to make a choice in regards to Ronan’s life and part of it is going to have to be based on a leap of faith. No parent should ever have to be put in that situation. I’m not one to get political one here because that would stir up too much shit, but HELLLLLLLOOOOO WHITEHOUSE!!!!!!! With all the money that you are spending on the world….. why don’t you throw a WHOLE bunch of it at Childhood Cancer so we can actually find a cure for this horrific disease that is killing MILLIONS OF CHILDREN?!?!?!?!?!?! They are our future and with the lack of funding, you are throwing away the lives of amazing children who would make this world a much better place.

I came across a quote by Mark Twain today and it made me smile. “There are three kinds of lies: lies, damn lies, and statistics.” I said at the beginning of all of this I was going to stop listening to the statistics for Ronan. I stand by what I said. He is not a statistic, he is my child. Many people do not want to associate cancer with children. It is just an unthinkable horror. It’s easy to dismiss the idea by saying, “This will never happen to my child.” Unfortunately, it happens more often than we’d like to believe. According to the National Childhood Cancer Foundation, one in every four elementary schools has a child with cancer. While many children are cured, there are still many children who will die.

When you lose your parents you are an orphan. When you lose your spouse you are a widow(er). There is no name for a parent who loses their child because it is just too unspeakable.

Why is the happening to my perfect little boy? Because there was never a boy born who is more beautiful in this world; so now he has to pay the price? I want an answer for something I will probably never know and it’s not fair. I want someone to be mad at and someone to blame, but that person does not exist. If I can’t have something tangible to blame, I want a cure, god damn it! I don’t want to have to put the life of my child on the line and trust my instinct in choosing his path. This is beyond unfair. It is sick, inhuman, and cruel. He does not deserves any of this! NO CHILD DOES! For all of you out there who are compassionate human beings; and I know you are because you continue to read this blog and pray for Ronan….. I dare you to come and spend the day at a hospital full of kids who have cancer. If your life is not affected, if you can walk away from all of this and never look back, you are reading the wrong blog. For those of you who are already doing something, big or small….thank you. The time is now to make a difference and your wake up call is here. It’s time to do something, whether it be to volunteer, to make a sick kid smile, or to help in raising awareness in any way possible. I wish I wasn’t getting my wake up call in life because my child has cancer. I wish I had someone telling me to do something. I would have listened if I had known this world existed. I lived a blind life full of a false sense that everything was perfect in the world, because my world was perfect. WHAT A BIG, FAT, LIE.

An innocently good day turned into a not so good night. Let’s see….. I threw up the one little thing I tried to eat for dinner, went to try to get gas in my car (had to leave due to not being able to get the gas to pump due to my head spinning) and then went to Target were I proceeded to abandon my cart due to almost having a severe panic attack in the store. Fernanda called just as I was walking out and I started bawling to her. She was like “What at the fuck are you doing trying to get gas for your car?” “That’s what we are all here for!” You know you are in trouble when getting gas seems overwhelming. In the mist of my bawling in the car before I left the parking lot I texted my Mr. Sparky eyes whom is always telling me that I am doing a great job at handling everything and I need to stop being so hard on myself. I said to him, “People that are doing o.k. do not have to leave in the middle of shopping at Target because they cannot focus on what they need to get. I am not o.k. and I cannot believe I have to make a decision in regards to my son’s life when nobody knows the right answer.” 2 minutes later, he called and basically talked me down from the ledge and sat on the phone and let me cry. He reassured me as he always does that we are doing everything right in our power and we are going to make the best decision for Ronan. He then told me how I am alright, I had just had a shitty day and tomorrow will be better. He also told me that anything I needed at Target, I really didn’t need anyway. He calmed me down as he always does with his wisdom and words. After talking to him, I was able to go and get gas for my car without any problems.

I came home to a hectic house of boys’ gone wild. My 3 little guys are so happy to be together, that it is hard to get them calmed down for bedtime. Lots of laughing and playing just as it should be.  San Francisco tomorrow. One more piece of the puzzle to put into place. Will it fit or not?? Only time will tell.

G’nite my loves. Thank you to Fernanda, Stacy, and Mr. Sparkly Eyes for being there for me tonight. Your words helped me through the night. I love you.

xoxo


Stem Cell Harvest day

Today got off to a bumpy start. I woke Ronan up around 6:45 a.m. and he was not happy to say the least. One, he was mad that I woke him up so early, and two, he was even more mad that he had to spend his day at the hospital. After having him hit, scream, cry, slam doors, and hide.. I finally got him into the car. He calmed down after a bit and I kept assuring him that there were no owies today. Once we got back to the stem cell room, our nurses, Heather and Kim, got things moving very quickly. They gave Ronan his Benadryl and Tylenol and soon started the process of collecting his stem cells thorough his broviac. Medicine and science are so amazing, the whole process was mind blowing.  After about an hour, we were able to see the stem cells start to appear in the bag. Ronan slept for the first couple of hours and after that, it was party time. He was a busy little guy but everything he did was done from his bed. We watched a little movie, shopped for Halloween costumes, played Star Wars, colored, did a sticker book, and last but not least, Ronan teased and flirted with the nurses the entire day. He was so playful and cute and he had those nurses eating out of the palm of his hand. Mimi Kay spent most of the day with us and Tricia came to visit as well. Ronan loves having those two around and so do I. It was a long day, but a fun day. Any day that Ronan is in great spirits is a good day for us.

After we got home, we played with the twins and waited for Woody to get home. It was a great day weather wise here… lots of storms and rain. Being a Pacific Northwest girl, a stormy and rainy day always make me happy. After it stopped raining I got a text from my friend/neighbor asking if we wanted to go for a walk. I knew the fresh air would be good for us so Quinn, Ronan, and I walked down to the Tarbell’s to pick our friends up. It was the best walk date ever. Ronan was so happy, running in the puddles and smiling. Laely and Wesley watched from the wagon and everyone was in a great mood. It made my heart melt seeing Ronan running around acting like the little 3-year-old he is supposed to be. What a great way to end our day. I love my neighborhood and I love our friends.

We heard back from the hospital tonight. We will not have to go back tomorrow because they got all of the stem cells they needed today. They needed 10 million and they actually got close to 15 million. So happy about that news!! One less day in the hospital for us! Our next big day will be Thursday when we go in for our MIBG scan, Bone Scan and MRI. We will then find out on Friday more in detail how the chemo is affecting Ronan’s cancer. Please, keep praying and loving him. I know all of your prayers, energy and positive thoughts are working on our sweet baby boy!

He is out like a light now and I am wiped out too. I hear some Nancy Botwin calling my name. I am going to indulge a little bit tonight and watch one of my favorite shows for a bit. Goodnight to all of our angels out there!