Tag: blog

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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Every teardrop is a waterfall

Ronan. Ouch. As I sit here and write, my fingers are aching with pain. The kind of pain that shoots all the way down to the tips of my fingers. This only happens to me when I am crying really hard. Like I’ve been doing all day long. I cannot stop. Guess what else I did? I got on a plane to fly back to Phoenix. Alone. As I was walking through the San Diego airport, it hit me that this is my first flight without you since you were diagnosed. We flew everywhere with you to try to get you better. Today, I stepped on that plane all alone without you to take care of anymore. There were no looks of pity from the other passengers because of your little bald head. If anything, people were full of smiles, someone complemented my tan, someone else told me I had pretty eyes and they liked my shoes. All the while in my head I was thinking, “What the fuck is going on?? Don’t you people know my son just died?” I sat on the airplane in the aisle with nobody beside me. Across from me sat a boy. A very cute boy who reminded me so much of you. He had tan skin, light eyes, and gorgeous hair. I thought to myself, I’ll bet Ronan would look similar to this boy if he would have grown up to be his age. The boy was holding a book about running. He also had some rubber bracelets on his wrist that he was wearing. I was content just to sit by myself with my thoughts of you, but then I noticed this boy kept looking down at my foot. He looked over at me and asked what my tattoo said. I smiled and told him that it said “this too shall pass.” He asked what it was for. I smiled again and told him that I had gotten it for my almost 4-year-old son, while he was sick with cancer. The boy didn’t know what to say after that except that he was sorry. I told him it was o.k. I took off my F U Cancer bracelet and gave it to him. He read it and smiled and put it on. I asked him about his running book. He then asked if I wanted to come over and sit with him. I said sure, why not. I sat with this boy and we talked about his running for a bit, but he really wanted to know all about you. For all the crying I did today, I sat with this boy, whose name is Bryson, and we talked about you for the entire flight. I told him about this blog that I write for you and how I had over a million hits on it. He was shocked to say the least and seemed confused as to how many people could know about you and your story. I told him it was because you are such an amazing soul and have so many things to teach to people in life. Turns out, Bryson is 17 and lives in Utah where he is the oldest of 6 kids. He has a little brother who is 4. Bless his mama.

As we were landing, Bryson told me that he wished that I were flying to Utah with him because he loved talking to me. I told him he was sweet and handed him a card with your blog info on it and told him to keep up his running. Shortly after that , I got a message from Bryson saying he looked up your blog and told me how touched he was by our love. He told me that even though he is only 17, he knows I’ll see you again and he could really feel our love and your spirit today. He thanked me for telling him about you and said I have changed his life and have inspired him. I sent him a message back and told him to think of you every time he runs and that you will push him to do great things in his life. I’m not sure why I met this Bryson boy today, but I feel like there was a reason. I feel like you were behind this. It was too random of an instant connection for there not to be a reason. Even if that reason for meeting him was only because of the few minutes I sat and looked at Bryson, before I knew anything about him, and I smiled to myself and felt happy because he reminded me of you in the way he looked. If this is the only reason, it is a good enough reason for me because for those few minutes, I felt like I was staring at an older version of you. So, to you my Bryson friend…. thank you for being such a sweet soul. I told you I felt like you are an old soul and I know you will do great things with your life because of my Ronan baby. He will watch over you:) And keep up your running and your mama too. I love that she is a runner as well.

After I landed, I grabbed a Taxi at the airport and headed to our house. I know I could have had a hundred different people pick me up, but I didn’t want the hovering. I wanted to be brave. I wanted to walk into our house, alone; and do whatever I needed to do. I needed to come home and do this by myself. You’ve been pulling me there for a couple of weeks now. I walked in, threw down my stuff and started screaming for you. I called out your name 20 times and then I ran into my bedroom and there you sat, on our dresser, in your urn. I grabbed you, kissed you, picked you up and held you. I took you into your room and sat in there with you for a long time and screamed for you, talked to you, and cried for you to come back. I opened up your urn, which I have been so afraid to do. I was so scared to see you in there. I took the cotton out and peeked inside to find all of your ashes in a clear bag. I took out the bag and held you and stared at you. Your ashes look like sand. I stayed with you in your room for a long time and wept. I read the sticker on the bag that said that these were the remains of Ronan Sean Thompson. Cremated on May 12, 2011. I almost passed out. You were born on May 12, 2007. I don’t even know what to think about this except it makes me physically ill. And it is insanely cruel, sick, and twisted.

I didn’t really tell anyone I was coming home, but Stacy knew. She showed up at our house and found me in your room, holding you, sitting on the floor crying. She sat and hugged me and rubbed my back. She picked up the phone to talk to your Daddy because I couldn’t answer it. I felt o.k. with her being there. It’s hard for me to break down in front of people and to not push them away. I’m not scared to do this in front of Stacy. I know this is not only because she is an amazing friend, but it has to do with the fact that she lost her sister and she can unfortunately, relate to my pain. This makes it easier for me to let her help me and as much as I try to fight her on it, I usually give in. I gave in tonight and let her stay with me and drive me to where I am staying as I cannot face being at our house right now. She insisted on staying the night, but I pulled a total Ronan move and kicked her out of my hotel room. She didn’t want to leave, but respected that I needed her to. I came home for a couple of reasons and one of them being that I need to grieve about you as I have not had a chance to breakdown fully yet. I cannot do this in front of your brothers and I have been holding this in since you died. I have to let go of these tears that I need to flow for hours upon hours. I’ve cried about you here and there, but not really crying as I have such a responsiblity to Liam and Quinn. I cannot let them see me this way. This is my time that I need with you. Just you and me, Ro.

I’m not here long and I will return back to San Diego on Thursday. I needed to see you. I need to see my therapist. I need to take care of some silly things too. I mostly just need to be, to scream, to cry, to throw things, to talk to you, to yell out loud to you that I need you and can’t live without you. I need to sit in your room like I did tonight and talk to you. I need to do this all alone because I am your mom and you are my son. And there are things I need to tell you that nobody else needs to hear. I need to feel you, to try to sleep without my medication so I can actually remember the things I dream. I need to see you, Ro. I cannot take not seeing you in my day-to-day life anymore, but to not remember dreaming about you is killing me. I need some alone time too. Some quiet to be able to sit and think about you, your life, my life and what the fuck I’m going to do now. How the fuck I’m going to go on because as my dear friend, Charisma, said today, I do not have a choice. She chewed my ass and I mean that in the nicest way possible. I needed to hear the things she said today, as hard as they were to hear because all I felt like screaming back to her was that none of what she was saying, mattered; because you are gone. She is the rational one though; I am not. I know she is right. But now, I need this time with you so I am going to let you guide me little one. I need a day to just cry about you for as long as I need to without having to worry about your brothers seeing me this way. If I don’t do this for you, for myself, I’m going to crack. Mental institution, here I come. I don’t want this to happen so here I sit, alone with my tears and with you. This is exactly what I need now and it is long overdue.

So, my sweet. It’s late, I’m tired without my Ambien so let’s give this organic sleep thing a try. I will wait for you in my dreams. I love you, Ro. To the moon and back forever. I hope you are safe and happy. I miss you so much.

xoxo

Magic Medicine, Day 3 Round 4

Headphones on: check. Music blaring: check. Baby sleeping: check. Tears out of the way for today: check. Today, was overall a good day. Ronan slept in until 9 which is very unusual, but he had a rough night. From about 2-4 he was up and throwing a tantrum. He kept throwing himself on the cold floor, insisting he was hot, and he was mad that he was “hooked up” to all of his medicine. He would not let me touch him, hold him, and kept screaming for me to leave. Finally, he fell back asleep. Mimi and Papa came around 9:30 so I could run home and sleep/shower. The sleep part never happened, but it felt nice to be home for a while. I also got to see Liam and Quinn for about 5 minutes which was a treat. I miss my boys. I came back to PCH and played the rest of the afternoon/evening with Ronan. Trish came by to bring me a coffee and say hello. Ronan was not happy to have her here at first. By the time she left though, he was yelling to her as she walked out the door, “Love you! Thanks for coming! See ya later, alligator!” It was the cutest thing. The “thanks for coming” part melted my heart. The nurses were all cracking up standing outside the door listening to him say his goodbyes. He doesn’t talk much around here, so they got a big kick out of hearing him yell all of those things to Trish. I was going to take Ronan downstairs to meet Mimi as she was dropping off some things to us. I asked the nurse to make sure it was o.k. and I got a big fat NO. Apparently, if you are hooked up to chemo, you have to stay on your floor and I guess they have gotten pretty strict about enforcing those rules. As soon as I told Ronan he couldn’t go downstairs with me, it was meltdown city. We were in the hallway and he started screaming, hitting, and crying. I had about 5 nurses run out to see what the commotion was. This lasted about 20 minutes and finally he calmed down and fell asleep in my arms. His little meltdowns always make me cry. I hate that he does not have the words to express what he is feeling.

New York is right around the corner. I’m anxious to get it out of the way. I am excited to go… I couldn’t think of a better place to spend a month, even if it is under the circumstances we are dealing with. I have the best friends and family who will be flying out to help me out and to give me a break. I cannot wait to meet Dr. Kusher and La Qualia…just to be in the presence of such amazing Doctors makes me feel so thankful that we are fortunate enough to have Ronan in the best hands.

I am hoping that Ronan stays asleep tonight for the rest of the night. We were told today that we will be able to go home tomorrow around 9:00 p.m. Yay for that. We will start Round 5, November 22. I can’t believe how all of this is flying right by. Please keep a special little girl in your prayers tonight. Her name is Mia. A few weeks ago, Auntie Karen and I were walking Ronan around downstairs, and a man chased us down and asked if this was Ronan. He said he recognized him from my blog that he follows. His little girl, Mia, is here now completing another brain surgery. I spoke with her mom on the phone tonight and it sounds like everything went well. She needs lots of prayers and love send her way too. So many kids do. Our roommate, who I will just call, S, went home today. I missed it and I am so sad that I didn’t get to say goodbye. Mimi was here and told me that the dad was anything but nice. After listening to the way the dad was talking to his son (who he hasn’t seen in over a week) Mim went over and told the dad how proud he should be of his little boy, how polite and well-mannered he was. The dad replied with some snarky comment about how he doesn’t seen that side of him. UGH. I would like to punch that guy in the face. That little boy could not have been any sweeter. It makes me sick to think that he dad does not appreciate how amazing of a little guy he has. The poor kid has been here alone the entire time and never once complained about a thing. I am going to keep him in my prayers for the rest of my life. We have a new roommate now. He is 19 and seems really nice. He is quiet which is always a bonus.

My sweet Charisma rocking a Rockstar Ronan bracelet. And seriously, could she be any more gorgeous? Love her. Email us at rockstarronan@gmail.com if you want one. They are 5 bucks. She is wearing the “nice” one which says, “Rockstar Ronan” “Our little hero”…. I also have a “naughty” version which says something not so nice about cancer….”F*cK You Cancer.” I rock the not so nice version. Alright.. seriously going to try my best to get some rest now, while Ronan is resting. Whooohoooo for almost being done with Round 4! Only 2 more rounds of chemo to go!!!! Goodnight to all of you beautiful people out there. Please spread the word about Ronan and childhood cancer in general. Together, we can make a difference!

P.S. 96,874…. as of today… this is the number of blog views I’ve had. AMAZING! I am stunned that so many people are taking the time to read Ronan’s story. Thank you to each and every one of you! xoxo