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!

I don’t have a choice. I have to go.

Ronan. You’re dead? You’re dead. I’m here. Still here. Because of the someone who is behind all of this. The person who behind all of this, who is not being merciful to me. So here I stay. Blurry, blurry days. A trip we must take. No. No. NO. But yes. Me, the everything must be perfect before we go on a trip. The suitcases packed perfectly to a tee. Never to forget a thing. Everything thought out and so perfectly planned. I lived for packing you and your brothers up for our upcoming travels. So perfect. Even our house. The house. All beds made. Laundry done. Dishes put away. In case we get robbed while we are away. I wouldn’t want the robbers to come into a messy house. This is how my mind used to work. The anal mind that used to control part of my life. Now your daddy, just stares at me from the bedroom. “You need to pack. And the boys’ don’t have winter coats.” But I don’t want to go and I don’t care about the winter coats, I think to myself. “I’m not packing. I’m not packing the boys either.” Your daddy, the best daddy in the world, steps up to the plate. “I’ll pack the boys,” he says. “And I’ll take them out to buy coats.” I just look at him. “I’m sick to my stomach. I think I have the flu. I think I need to go to the hospital.” Your daddy kisses my head and leaves. I lay in bed. My jewish sister from another mother appears. She comes bursting through our front door with her arms full of homemade brisket, potatoe latkes, gifts for the boys, and silver sparkly disco sunglasses on. She yells at me from the front room. I peek out from my bed. “I’m here to take care of you, feed you and to dance for you.” I smile my fake smile. “Cut the BULLSHIT smile!!” she says. “I’m sorry. I don’t know what else to say because nothing that I say, will make this better. But I can dance for you.” She dances and jumps on my bed. She makes me put on the sparkly disco sunglasses. “I haven’t packed. I have laundry to do. I can’t do any of it.” “Well!!!!!!! That’s what I’m here for. I’ll pack you.” I say o.k. I eat some food. I watch as she grabs things to pack. “A couple pairs of jeans, your F U Cancer sweatshirt, your spirit hood, some workout clothes, some boots, underwear, pajamas, running shoes, some tee-shirts…… what else, mama?” “Nothing else,” I say. Nothing else. We sit in our living room. We watch some gun show on T.V. without the volume because I can’t figure out how to turn the sound on. That’s how much I watch T.V. now. Mandy Bee rubs my back. I let her while I listen to the 15 voice mails I have on my phone. All of which I have been ignoring. We light the menorah that sits in our window. We put your picture by it. Mandy Bee says her jewish prayer. I like it. I like the way your little face lights up in the picture from the flickering of the candles. Mandy Bee leaves. But then she comes back. “I’m not leaving you.” I crawl back into bed. She leaves. I throw up. Your daddy and brothers return. Quinn and I crawl up in Liam’s top bunk bed. We fall asleep. Ambien induced for me.

Morning comes. I ignore everything that there is to do, around the house. I shower. I throw up. I feed your brothers. Max and Ruby, comes on T.V. Fucking Fuck. Your favorite show. I throw up, again. I get your brothers in the shower. They are going to play at Cal’s house. We stop at the car wash before I drop them off. I hold their hands. I laugh and smile with them. I miss you. I drop them off. Little Heather, texts me. “Meet me at PVCC for a quick bite.” I do. I eat a grilled cheese and see all your little friends at day camp. I cry. I listen to little Heather, talk about so many things. I get lost in her world for a bit. She is good at letting me do that, without letting you get lost because she knows, it is always about you, even when LIFE is not. As LIFE, goes on for others. She embraces the you in everything that goes on and she didn’t even know you. I appreciate this. I leave little Heather but not before, Sam, her little boy, comes flying into my arms for a hug and a kiss on the lips. I smile at him and the way he reminds me of you. I drive to Dr. Jo’s but I stop at Starbucks before. I run to the bathroom and throw up everything. I brush my teeth, wipe my face and wait in line. I see a bucket full of the cutest little stuffed animals. I thought to myself, Ronan would love this. I panic. OMG. I didn’t buy Ro a gift for Christmas. I grab the stuffed animal. I start to cry. I wipe the tears and buy the little guy. I stuff him in my purse. I get to Jo’s office. I wait in the waiting room, but I really just set my coffee down and bury my head into my arms and cry. I don’t know how long I waited before she came out. 15 minutes maybe. She finds me and I make my way back to her office, only to fall on the floor and not the couch. We sit there, and I look at her. “Ronan’s dead?? Ronan died, right?? He’s dead?” She holds me and nods her head. “O.k.” I say. “Ronan is dead.” We sit. I cry. I look around her office. I see your picture. She asks if I remember her telling me that it was about 6 months after Chey passed away, that were the hardest for her. That the 6-12 months after, seem to actually be harder. I told her I didn’t remember. But I feel this way, now. I tell her I think I need to go to the hospital. I tell her how I can’t breathe. She is quiet and does not entertain my thoughts of a hospital. She doesn’t want that for me. She knows I am stronger than that; I think. We talk about what’s been going on. Halloween. Thanksgiving. Sucksgiving. Christmas. A birthday soon. The list goes on and on and on. I pulled out the stuffed animal and show her what I bought for you. She asked me what you would have named him. I tell her something silly, like Gary. We name him Gary. I look at her and say to her, “I don’t have a choice, right? I have to get on that airplane tonight and go?” She replies with, “Do you have a choice?” I tell her, No. I have to do this for Liam and Quinn. She says it is a sacrifice of love for them. I agree. I don’t want to go home. Back to the place that was our peace. Our solitude. Our paradise, without you. I have not been back, since right before you were diagnosed. It was the last place I spent with you, when you were “healthy,” but really had Stage IV cancer. I don’t want to but I don’t have a choice. I have to go back, someday. Your brothers are so excited. I tell her I’ll fake it, for them. I have to continue to fake this, for now as to not ruin their Christmas. We say our goodbyes. I ask her if her kids are coming up to Sedona. She replies with they are. “Well, all of them except the dead one.” I burst out laughing. That dark sense of humor that I so get. She tells me that Chey gets the top of the Christmas tree, every year. She tells me, that she is not a fan of these holidays either. I know why. I tell her I’m off to the airport to watch happy families everywhere, going to happy places. I’m going to ignore these families this year and pretend everyone has a dead child too. I used to be that happy family, chasing you through the airport with not a care in the world. Fucking asshole cancer. I leave her office, feeling better than when I had arrived.

I go home to a quiet house. I go into crazed mode, packing, cleaning, laundry, beds stripped, dishwasher unloaded. Robot mode. Survival mode. Instinct. Memory. This is what you do, so suck it up and do it. We get to the airport. 4 not 5. Where are you? Bags checked. “Woody, can you watch my things? I have to go to the bathroom.” I go. I throw up. I am so fucking nauseous.

I gotta go baby. I miss you. I love you. I hope you are safe.

xoxo

I hope it’s nice where you are

http://youtu.be/3b1RjGYI1-g

 

Somebody wake me up when this bloody holiday is over.

Ronan. I am really, really hoping that I am not truly losing my mind from the pain of losing you. I am really, really, hoping that this pain, which is already intolerable, only feels as if as if it is on steroids, just due to the fact that Christmas is almost here. I am trying hard to be logical about this. Who cares about stupid Christmas? Why is it because Christmas is here, that it is making this 10 times harder than normal? I have been doing a lot of talking to myself because Inferno Fuckwad Bob is trying to completely take over. I had this conversation in my head tonight about how much pressure the holidays bring anyway when you are a normal human being. Now, try doing these holidays when your child is dead. I am trying not to panic about the many reactions my body is having…… which I swear I have no control over. The throwing up. The blurry vision. The headaches. The insomnia. The racing of my heart. The shaking of my hands. The way I can’t seem to breathe. The way every part of my body hurts. Even the tips of my fingers. I feel like I should be admitted to a hospital. Can’t they sedate me and put me on oxygen, too? So I can breathe a little more easily? Can’t they just put me to sleep for about a week? I deserve a little break from this or else I am going to crack. Maybe I am starting to crack and these are the warning signs.

No amount of physical exhaustion is helping either. And it normally does. This morning I got up early and met Mandy Bee for a workout at some place she goes. I don’t remember much of it except we did a lot of picking up heavy tires, ropes, and punched a boxing bag. Afterwords, I was shaky and I hopped in her car as she talked me into going to Starbucks. I think she was really afraid to let me up and just drive home as I know she saw the sheer look of terror in my eyes. She drove me to Starbucks but she had to pull over right in front so I could run into the bathroom because I told her I was going to throw up. I did. A whole lot of liquid as I had nothing else in my stomach. I brushed my teeth in that Starbucks bathroom as I now carry a toothbrush with me everywhere because I am so used to this happening. We sat outside and drank our coffee and made small talk with some south african guy. The small talk turned into the how many kids do you have, question. I let Mandy answer first. My turn next. Lucky me. “Two eight year olds. And an almost 4-year-old who just passed away.” Good thing the dude was wearing sunglasses so I didn’t have to see the look in his eyes. I’ll never get used to saying this to people when they ask this question to me now. I always take a minute to answer and think to myself….”There has got to be a better way, to say this.” Turns out, there is not. It will never just roll off of my tongue.

I found myself on my bedroom floor today, huddled in the corner of my room and on the phone with Dr. JoRo, bawling so hard I don’t think she could even understand much of what I was saying. I told her how I couldn’t breathe, how I wanted to just go to sleep, and how tired I was of everything. I stayed this way for about 10 minutes. I then told her I had to go because it was time to be a mom and I was taking your brothers rock climbing. I had to play the good mommy role and suck it up. All I wanted to do was crawl into my bed and not come out. I didn’t though. I sucked it up and pulled myself together as they were so excited to be off and doing something with me. We went with Kristi and her gorgeous girls. I loved watching your brothers as they tried something new. I tried not to let the fact that you weren’t there with us, ruin everything. I made myself climb to the top of that rock wall today. Actually, Kristi really made me do it as I was content to just sit and watch your brothers. I was glad she did. I was halfway up and decided to turn around and look down. Bloody hell it was high up there. I almost stopped and turned around. A vision of your face flashed in front of me and I looked up and made myself continue on, to the very top until I touched the metal little pole that proved I did it. I know you were proud. As Kristi said, one more thing on my little list, checked off. I thought to myself…… yes indeed. But I wondered how long I could really keep all of this up. I’m still glad to have that little check mark off of my list. I did it for you and for your brothers. Because they deserve to have a mom who hasn’t completely checked out. I know I am being hard on myself but I also know that your brothers saw me as I cried in the car all the way home. I wish I could hide my pain from them all the time, but sometimes it is impossible. It is so hard to look them in the eyes when it is so visible to them, that I am hurting so badly. No 8-year-old should have to watch their mama wiping away the never-ending tears. But no 8-year-old should have to ever watch their best friend and baby brother, die of cancer either. It is all fucking bullshit.

We came home tonight to your daddy. I ran to the bathroom where I threw up the dinner I tried to eat. I took a bath and crawled into bed. Your daddy, sat with me and just held my hand while I stared blankly at the wall as the hot stinging tears poured down my cheeks and soaked my pillow. He took your brothers out to run some errands. I fell asleep for about 30 minutes. I jumped up, startled, when my body realized that I had fallen asleep and reminded me of how wrong everything is in this life now, including things like sleep. No rest for the weary.

I love you. I’m sorry. I miss you so very much. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.

xoxo

For you, Ro. For me. For us. Because Neil is one of our favs.

http://youtu.be/dVC2cszdTao

Survival of Christmas, an Anniversary, and an UnBirthday= A SPARTAN DEATH RACE

Ronan. I feel dead. For real. Like I’m living here but I’m not alive. I’m numb. Again. It must be the holidays that are right around the corner. The ones that I cannot wait to be over. But then you know what’s next….. an anniversary. Our 10 year anniversary.  Impressive right? We were supposed to be in Peru, hiking Machu Picchu. We were supposed to be doing something extra special to celebrate the life that we had been so blessed with, the life we worked so hard for. To celebrate our happy life of still being each others best friends with the most perfect little family we could not have dreamed up because it was that perfect. It was simple. It revolved around pure and true love. With the most 3 beautiful boys, ruling our house which was always overflowing with love, fights, silliness, chaos, naughtiness, sweetness, laughter, dancing, sports, calmness, peacefulness, and security. What more could we ask for? Nothing. We didn’t ask for anything as we knew that we were beyond blessed. But then you got sick. And then you died. And now we are here. With a 10 year anniversary coming up to celebrate. No thanks. I would not like to sit in a fancy restaurant this year. I’ve never really liked to sit in a fancy restaurant, any year. I would really like to dig that hole in my backyard and Woody can throw me down food to eat. Kind of romantic, right? I can see how many marshmallows I can catch in my mouth. No fancy restaurants. No fancy anything. And next up….. My birthday! HOLLA!!!!! That one is sure to be bloody horrific. I remember where I was last year. We were at PCH cuddled up in your bed. We got woken up by one of our favorite lovelies with, “Good morning, young lady!” It was the best way to start my very unbirthday. But you told me happy birthday and smothered me with kisses. So many kisses. I was so happy to be there with you. My girlfriends tried to get me out but I think I denied their request. I am pretty sure I stayed with you on my Unbirthday. Playroom Kathy brought me a little cake. You fed it to me. So sweet. It was the best birthday I’ve ever had because we were together. More together than we had ever been in life before. Life and Death partners. One mommy who was healthy and one baby who was sick. Very, very sick. But we didn’t let that stop our parties in your bed. Right, Ro. We partied like it was 1999 with your chemo, and asspole as our guests. We didn’t care. They couldn’t cramp our style. You were getting better. Obviously. That’s what everybody was saying. You really weren’t. At this point, I think this is when everything started to spiral out of control, we just had no way of truly knowing it. Scans were next! After this last round 6 of your chemo. For not having much of a memory anymore, I remember much of this. I can even remember the hospital room we were in and which side of the room we were on. Not a window side, which we always hated when we had to share a room at PCH with other people. We loved our view and a window view room was always such a treat.

So, Ro. A birthday is coming up. But I think I stopped having birthdays when you were diagnosed. This will be my second annual Very Unbirthday Day to me! Does this mean I get to subtract 2 from my actual age? I think that is a fabulous idea. I will not be 34 this year. I get to be 32. I’ll just start getting younger as I think I deserve this after having to go through this life and losing you. Although, I actually feel like I am 74 after everything that has happened. So, what does one do on her second annual Very Unbirthday Day? Go skydiving, of course. I told you I was making plans, Ro. Lots of plans to try to make myself feel alive, otherwise I don’t have a chance at staying on this earth. I think skydiving is a MUST. You know what else is coming up?? After my trip to NYC…. The Spartan Death Race.  Check it out here: http://www.spartanrace.com/      It’s in February at Rawhide. All I heard were the words, 9 miles, mud, fire, tight spaces, obstacle courses, and you may die and I couldn’t sign up fast enough. There was also some huge liability waiver I had to initial as well. It said something about them not being held responsible for your death. I skimmed over it. I signed it in blood. Bring it on. You had me at, “you may die.” I’m not scared to die Ro. Your Sparkly made me look him eyes and promise him no more death hikes at night. And I promised. Had to. So, no more night death hikes means I must find something else to help this insanity. I also told him, “Ronan died of cancer. That makes me invincible.” Because if I am still here, surviving this pain, surly I can survive a 9 mile little race, right? Absolutely. And I know you know the reason behind all of this madness. These things are the only things that make me feel a different kind of pain and it takes my dead body and makes it feel alive for a short period of time. On normal days, I am a walking zombie. I wish I had a cool Bill Murray Zombie friend to hang out with. Or you. I wish you were here and would be my zombie friend. We were the best team. We were the best everything.

I miss you. I love you. I hope you are safe. I worry about you so much. All day long. All night long. The worrying never goes away. I love you my spicy monkey boy. I love you to the moon and back. Sweet dreams.

Quinny misses you so much. This pic rips my heart out, Ro. For so many reasons. But I’m trying so hard to keep them happy.

Here’s what I know about life. Nothing.

Ronan. You know what I know about life? Nothing. Except for almost 4 years, I took care of you almost every single day. And then from the time you were diagnosed from the time you passed away, I was so emerged in the fighting for your life world and all of a sudden it’s just gone. Just like that. And now I am expected to go back to “life.” How wrong is that? How does one do that? I don’t know. You know what I feel like? This came to me last night as I was waiting for the devil Ambien to kick in, because yes, I’m back to that for the moment. I feel like somebody has taken my body out to the Arctic Sea. I feel like I am constantly being dipped in and out of that freezing ocean. And just as soon as I am starting to defrost, I am dipped back in where my entire body is shocked to the core. In and out in and out. It’s a never-ending feeling of numbness and pain in which I have no control over. That’s the best way I can describe it tonight, anyway. Then I was thinking about the outside, non bereaved world. I’ll bet they think the pain of this is something like putting a your most favorite dog to sleep. Not because they love their kids any less, but because I think unless you are in this situation, although you may try to understand you cannot possibly have any idea of how much this truly hurts. Does that sound cold, insensitive, and harsh? I don’t mean to. I’m only trying my best to explain how deep this pain is, to the outside world. Of how I know how much they think they can understand this, but they cannot. And for that, I am glad. I wouldn’t wish this on anyone. I would never want somebody who has not gone though something like this, to truly be able to understand the pain that comes along with it. Not fully anyway. It is just too much.

This past week has been much harder than I had expected. I get that the holidays are around the corner and I keep hearing everyone talk about how hard they are going to be for us, but I’ve been doing my best just to get by. It’s only been these past few days that I have realized that I have no control over anything, no matter how strong I am trying to be. I’ve been crying non-stop. I am trying so hard to give Liam and Quinn a somewhat normal Christmas. I took them to Target and told them to pick out some things. I tried my best to put on my pretend mommy boots because they deserve to have a nice Christmas, whatever that means. But this year, when they were picking out a few things, I made them pick out some things for your friend here, Super Nate who is battling Neuroblastoma as well. They picked out a blue light saber that really lights up, a clone trooper bobble head, and your favorite, “guys helmet,” Captain Rex. I am trying my best to make sure they still get to be 8 years olds, having an 8-year-old Christmas, when all I want to do is strangle Santa and shoot the fucking elf on the shelfs head off with a machine gun.  I’ve had a talk with them about how hard this Christmas is going to be on all of us. I don’t know if what I am doing is right but all I know is I’m not going to hide the fact that this is our first Christmas without you and it fucking blows. I’ve told them this in a much nicer PG rating way though…… although I didn’t want to. I wanted to scream, kick, cuss and cry in front of them, but I didn’t. Somethings have to be done a little more gently with a little mama love thrown in. I’m running on empty but I gave it all I had. I hope it was enough.

I went to PCH I think on Wednesday or Thursday night. I can’t remember now. I went to see Nate and to give him his toys. I stayed a lot longer than I expected. He was so excited about the real light saber. I felt so blessed to be able to give it to him, from you. He let me play with him in his bed and he even let his mama slip out to take some things to her car and grab some food. I got to stay with him, alone. What a little doll. We played the funny monkey game on my iPhone but my favorite part was when I had him giggling up a storm by making his Storm Trooper bobble head eat some cheerios. His little laugh was priceless. He even let me kiss his bald head and said I could come back sometime to play. Just as I was walking out, I saw one of your favorites, playroom Kathy. She kidnapped me and I ended up staying another hour, just catching up with her. I saw some of your other favorite nurses, Kathy and Katie O. I cried when I saw them as I haven’t seen the two of them, since we were there getting your last round of chemo. I asked if you very favorite nurse, Arica was there but she was not. I told them to give her a hug for us anyway. It was nice to see them all but it made me super sad that you were not there with me. It turned into a full on party because Miss Elizabeth Blair ended up being on the floor as well, getting treatment. I got to give her a hug as well as her mommy and daddy. I left PCH feeling drained, but in a good way, I guess. I told your Mr. Sparkly Eyes that now going to a hospital to make a little boy smile feels so much better to me than sitting in a fancy restaurant, trying to enjoy something normal. Normal does not feel good. Normal does not exist. I would rather be off, doing something for someone else, than trying to pretend to live in a normal world where pretend normal dinners will never be the same. So, when I get a night out….. I would rather sit in a hospital with a bald-headed little boy than in a restaurant full of friendly faces. This is just the way it is now.

Being in our house has been really hard for me all week. Everything is making my skin crawl. Dr. Jo has been gone which I’m sure is part of the reason, I feel like I’m going to flip out. She has become my lifeline and the fact that I have not been able to see or talk to her, has been really difficult on me. Much harder on me than I thought it was going to be. I’ve been so tired from not sleeping well. I came home on Thursday and passed out for a little bit. Naps used to come so easily to me. To us. I fell asleep for about 15 minutes. It was restless and I dreamed of you, but in the worst way possible. I dreamed that I was watching you from your radiation table. You were looking at me in the eyes with such a look of trust because you knew that I was going to save you, because that is what I had promised. But than you died. I woke up to this nightmare only to find that it was indeed, my reality. It wasn’t a nightmare at all. I had dreamed the truth. So now for the past week sleep has become so painful and the days are too much to handle so I crawl into bed, begging to black out. This is where my frenemy, Ambien, has come back into play. I’m not happy about this at all. But sometimes, I need a break from everything. Including life.

I’ve been hiking and being active to try to calm down the never-ending screaming in my head. It’s not helping. I went up Camelback, late tonight, just like I’d said I’d never do again. I did. But this time, I was able to use my handy little flashlight app on my iPhone so I could see better. Thanks friends.

Ro baby. This is all for tonight. My brain is mush, my eyes are tired, and my heart is not fucking healing. I just want you back. Or I just want to be with you. I love you. I miss you. I hope you are safe.

xoxo

A purple dress for you? Of course.

http://youtu.be/mtH2L5I6vYM

A Rebel with a Cause and A Death Hike

Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.

I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.

Pediatric Cancers:

Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers

There has not been a significant breakthrough in the deadliest childhood cancers in 30 years

One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers

Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials

Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.

The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable

In today’s clinical research landscape, progress is too slow and promise too rare

Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)

Basic research generally receives more funding than translational or clinical research

Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone

Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries

Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas

Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer

Conventional nonprofit organizations are not necessarily designed to progress therapeutic development

Parents are forced to become experts in their child’s treatment

With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can

To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer

Children need help now

You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.

WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.

Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.

So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.

I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.

So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.

A Dangerous Day Indeed

Ronan. Today, I lived. I lived and I didn’t feel like dying for the first time, in a long time. But I am still aware of the reason it is, that I am trying to live this life to the fullest. I am aware that it is because of your death, that I have no choice but to go on and try to live this life now that I am without you. That is a heavy things to carry around with you, when you are just trying to survive. It weighs you down but at some point, you just have to try to get used to carrying this weight around with you now. Because it is never going away. I met Mandy Bee, Kristi and her friend, Jacqueline, at Scottsdale Gun Club. I’ve never shot a gun before in my life. Well, that is not totally true. I’ve shot a bb gun a few times. I think I tried to shoot my little brother once, when we were little with one. But that is the extent of my gun experience. Today, I had no idea of the awesomeness I was in for. I should have known just due to the company that I was in. We arrived, Mandy and I had to watch a little video before we got started. Kristi and Jacqueline are pros. Jacqueline has been shooting guns since she was 9. Badass. We made some pretty little targets to shoot at. Most of them said, “Fuck You Cancer.” or “Cancer is an Asshole.” I made one, for a specific person, who shall remain nameless. But it felt the best when I was shooting my machine gun, at this sign. I also made one for Inferno Fuckwad Bob. Jo would have loved that. We shot a couple different machine guns, a pistol…. I have no idea of the actual names of these guns. All I know is it was the best therapy I’ve had in a long time. I took out a lot of aggression and anger today on those targets. I felt empowered. I am woman, hear me roar.  I told Woody I want a machine gun, for Christmas. I was joking, of course. But that is how I feel. Like life is so fucked up that I should just be able to walk around and carry a machine gun with me at all times. To kill all the zombies that are trying to eat me. You would have loved today, baby doll. I know I made you proud. Check mark number 1 for your little bucket list  that I am going to carry out for you. Thank you K,M and J for today. It was a day that Ronan would have loved.

After our little Baby Danger outing, Mandy Bee and I went and grabbed some lunch. I told her I was freaking out because I hadn’t worked out today, so I was going to go home and try to get in a run before I grabbed the boys. She told me I should just come over and I could workout at her house. She said she would teach me to box. Sign me up! Another thing, I’ve never done. We got to her house and changed. She has a punching bag hanging in her garage. I told you this crazy stalker girl, is my kind of girl;) One that keeps a punching bag hanging from the ceiling of her garage because she likes to take her aggression out on things that she can hit. It was pouring outside. We turned on some loud music and bootcamp Mandy was in full effect. She yelled at things for me to do. I did them. After about 20 minutes of doing whatever she told me, it was time for my little punching lesson. I put on her gloves. I tried to focus on my form and breathing. Mandy held the bag and screamed a lot of fuck words for me. It was hard. Really hard. Next I took off the gloves. It was time to hit the bag, with my forearms. I can’t remember what Mandy called it and I didn’t care. All I knew is I was beating the shit out of something and I didn’t want to stop. I continued. She told me that was enough. I told her no. I wanted more. She told me to look at my arms. They were all scraped, bloody, red, bruised. I told her I didn’t care. It didn’t hurt me. She let me go another round. She had to pull me away. We worked out in the pouring down rain. I didn’t have shoes because I had worn my boots earlier in the day. So we were both barefoot. After our kicking workout in the rain, we went on a run. Barefoot. We came back to her house. I told her I wanted to punch the fucking bag again. She let me but finally told me enough was enough. She wasn’t going to let me hurt myself anymore for the day. I felt like what I bet a crack addict feels like. I wanted more. My bruised and bloody arms, told a different story. I can hardly wait for my next little punching lesson. I really did tell Woody that I want a punching bag and boxing gloves for Christmas. Preferably purple.

You know how I am when I say I’m doing to do something, Ronan. I don’t half ass it. Today, I didn’t do just one thing I’d never done before. I did three. I told Tricia this and she laughed and said, can’t we just ease into this and your new danger plan? I told her no. I’m already plotting as to what next week has in store. Although your brothers will be out of school for break, so I’m going to have to get creative so I can include them too.

I’m tired tonight. Sore. I spent the rest of the evening, feeling sick to my stomach due to the crazy Mandy Bee Bootcamp. It’s still raining. Pouring. I hope it never stops. I love you. Today, I missed your smile so much that it took my breath away. You have the most beautiful smile baby. I miss you. I love you. I hope you are safe. Sweet dreams my little wild and free soul. I hope you saw all I did today and you know it was all for you. Always for you. G’nite.

xoxo

  • Instagram is my BFF

    We love our Flower Child Family!! #Repost @eatflowerchild
・・・
Kick off September right by raising awareness about childhood cancer, Come support The Ronan Thompson Foundation | One dollar from every kids meal goes to @ronanfoundation & helps fight cancer for kids || #iamaflowerchild #beboldgogold @mamamaya #Repost @ronanfoundation 
Gold goes runway...and #BeBoldGoGold goes NYC! We're obsessed with this skyline shot of supermodel-to-be, local AZ girl, @alligooch, who is raising awareness during casting calls for New York Fashion Week! This girl is beautiful inside & out. Alli, thank you so much for using your heart of gold to help our cause. People like you change the world! 🌟💫✨
Don't forget: Show us where you're rocking your gold! Don't you worry about what we are up to today over here @woodythompson75. #ronan #beboldgogold #childhoodcancerawarenessmonth #gogold #fucancer
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