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Tag: ronan baby
Late night rants and I can’t put Poppy down.
Ronan. Fucking, fuck, fuck, fuck. I’m venting on here tonight and I don’t even care. I have been spending all of my nights, writing about this nightmare for this book and going back to re read my blog, which I’ve NEVER done, to reference some things.
This is beyond torture. I knew this was going to be hard, but SHITBALLS! This is beyond sick. I would give anything to be tucking you into bed instead.
So, the little time at night that I sleep, I have been having horrific nightmares. Last night, Poppy had cancer and went from being my healthy, chubby baby girl, to wilting away in my arms as I watched her die. Are you FUCKING KIDDING ME?! Can’t I catch a break around here?! I mean, I wake up to a nightmare everyday, which is not having you here, and I can’t even go to sleep without being tortured as well. Where are my puppies, unicorns and rainbows when I need them? Oh, I remember. I stopped subscribing to those a long time ago. Lucky me. Whatever. It is impossible for me to have gone through something like this and just stick my head in the sand and pretend like nothing happened. I’m so sick of hearing from the idiots of the world that now that I have Poppy, I should just move on and leave all of this behind. Well, nobody has ever told this to my face, but as always, I hear the whispers and they are whispers of BULLSHIT from sad souls who are obviously so self absorbed that they think that going through something like this, then having a baby makes everything disappear. That is so very untrue and so very ignorant.
Leave all of this behind?! Are you kidding me? Never. I will never sell my soul to the devil that way. I will never sell out and “move on” from Ronan. Yesterday, I woke up to 7 kids dying of cancer. 7!!!! And that is only in the United States! Where are the riots on the street for that?!? Unbelievable.
I am not going anywhere, ever. I will stay here and continue to fight for you, Ronan and for all of these other kids until the day I die. I am not going “back” to my life of happy. I am a tortured soul and I can live with that. If anybody that is close to me has a problem with that, then please feel free to exit. The whispers are getting beyond fucking annoying.
Ronan. I started that rant a while ago. I think I was in the middle of being consumed by my writing at night and obviously I needed a break. My break came at the perfect timing as my childhood best friend, invited us down to stay with her over the weekend in Hood River, Oregon. It’s taken me a while to be able to say yes to something like this. I know Amy has been wanting to see me for a while now, but it’s honestly taken me this long to get back to that place where I feel I can see people again. Coming to your Nana and Papa’s is wonderful in so many ways, but I do tend to turn into a little of a hermit here. Meaning I don’t go out and do a lot of things. I prefer to stay home and only venture out for little adventures, here and there. Thankfully, they have enough acres and space to make us feel like we are in a different world, off doing a million adventures, without having to leave or drive anywhere to do so. When Amy asked to see us, I hesitated a little bit but ended up telling her we would come to her. We needed a change of scenery and I very much needed a break from my writing. Plus, I really have missed my dear friend.
We headed out on Friday for a weekend full of all thing amazing and beautiful that the Pacific Northwest has to offer this time of year. Mountain biking up some wicked trails, running through sprinklers, blueberry picking, ice cream, watching the boys play and splash on the beach, an amazing hike, all in a 48 hour period. Your brothers had such fun with her boys that they didn’t want to leave. I handled the weekend pretty well and tried not to let the wind get knocked out of me every time Amy’s very spicy 3-year-old, did something naughty. Oh, how he reminded me of you. He even has that same color of copper hair. Seeing your brothers with him and watching them giggle whenever he did something he was not supposed to do, broke my heart over and over again. But I survived the weekend much like the way I survive this life, by being surrounded by really amazing people and letting myself get lost in the smiles from your brothers and cuddles from your sister.
At one point Amy said to me, “You know you can put Poppy down, right?” Apparently I had been walking around pretty much the entire weekend, without setting her down except for when I had to change her diaper, but I hadn’t noticed this. I just looked at Amy and said, “Put her down? I never put her down. I can’t.” Errrrrr… I might be turning into an obsessive psycho maniac over your sister, but we all know there is a good reason behind this. Besides the fact that she is just too adorable to ever stop staring at.
Our weekend was wonderful and I’m back to the grind of trying to juggle 50 things at once. Yesterday, I felt so beat down that I almost cracked. It’s times like these that your Nana can sense it all and looks at me and says, “Give me Poppy and go for a run to blow off some steam.” That’s precisely what I did. It’s going to be hard to leave this place to go back to the realities of Arizona. It is still really hard for me to be there, but I will stick it out until something comes along to take us elsewhere. A change is in the air I think but I’m just not sure what that looks like as of now.
I have some other not so fun things to vent about, but I’m not going to do that now as I have to get back to the hours I need to put in with your book. All will come in due time. I also have some really amazing things to share as well as the sad/beautiful seem to live hand in hand.
I miss you so much, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.
xoxo
Happy Birthday, Taylor!!!
Dear Taylor,
Wishing the girl with the most beautiful heart the happiest birthday, ever. You have inspired me in such a way that I didn’t know was possible after losing my Ronan. Thank you for being such an old soul in the youngest, most carefree way, possible. Thank you for all you are doing to help fix this very broken world of childhood cancer. I promise to make not only Ronan proud, but you as well. I promise to never give up and to fight harder everyday, because of people like you.
Happy Birthday, darling girl. I love you.
Maya, Ronan and the rest of The Ronan Thompson Foundation board members
Lipgloss Living isn’t easy when your heart is broken
Ronan. I died long before you died. I died on the day you were diagnosed with cancer. I’ll never forgot the way the news was presented to me. Like, “Oh, hello I am an Oncologist. Your son has stage IV Neuroblastoma. Have a wonderful day.” I was stunned, in shock, and the world was literally spinning around me. I was still trying to figure out what the fuck an Oncologist was. I fell to the floor. I died right then and there. But I got back up from my death. I got back up and I fought. We were thrown into the world of childhood cancer and did not stand a chance. Oh, how I thought we did. Because of course you were special and you were mine and we loved each other so much that the God’s from above were going to work in our favor and save you. They did not and you died. And now I will say over and over again, fuck those Gods for taking my child. After you died, I died again, right along with you, by your side, as you took your last sweet filled breaths. “Come with me, Ronan. Let’s get the FUCK out of this place. Take me with you. Please. I don’t want to stay here alone. I am dead, too.” Dead. Dead. Dead. Not once, but twice. So far in my life, I have died not once, but twice.
You die when your child dies. It’s a fact. You die, over and over again. Yet somehow, you just keep being reborn. I often have days where I’ll look in the mirror and say to myself, who are you today? Because I don’t recognize this face. It’s a new face today, but always the same eyes. Those big, sad, green eyes that are filled with so much pain, darkness, and fire it is as if I am looking into the depths of hell itself. Do you know how I go out into the world now Ronan? How I know what kind of day it is going to be? My days are determined by my lipgloss and I’m not even freaking kidding you. What the fuck, kind of way is that to base my days off of? I don’t know, but it is the only thing that seems to work for me. No lipgloss= a really bad day. A clear or light lipgloss= a calm or peaceful day. A bright or red lipgloss= a very, extra spicy day. A red lipstick day! Holy hell. Hold on to your pants, because someone is pissed. I never did this in my life, before I died. I only knew one feeling during that time and it was pure and utter bliss. Lipgloss living wasn’t even on my radar due to the emotions I was feeling. I just wore it because it made me feel pretty and for no other reason then it was girly and fun. Now I wear it to not feel pretty, because I never feel pretty anymore. I feel ugly all the time. I now wear lipgloss like it is part of my survival to stay on this earth. Lipgloss is my imaginary friend that helps me get through the day, the way I need to get through it. Didn’t think I was crazy before? You surely must think I am crazy now. I have imaginary lipgloss friends. It’s o.k. You know I am o.k. with the crazy that exists inside of me. It’s always been there. Now it’s just a little more tangible.
Today had no choice but to be a better day, then yesterday. But last night. That was hell. I think I tossed and turned until almost 5 a.m. I think I beat up some pillows and sent some raving mad lunatic emails to only the one close enough to us, to receive them. Emails that said things like, “What was I thinking, coming here without my Ambien?!! I need it so I can take 5,6, or 7 of them. Or I actually just need my son back, so I can sleep peacefully, again. Can you bring him back for me? I know you can’t, but just thought I would ask. G’nite lovie.” I finally fell asleep after writing a bit. Crying a bit. Thinking a bit. And missing you, a lot. I woke up today, tired but filled with a nervous energy that I couldn’t shake. Adrenaline running through my body like wildfire. Must go, go, today. Do, do, do. I went to visit someone who I have not seen in a long time, but someone who had a hand in shaping me during those very tumultuous teen-aged years. Someone that watched me at my worst and my best. Someone that watched me as a crazy dramatic teenager, grow into a young woman, and now this; a broken-hearted adult. I walked into to see her, like a puppy dog with its tail tucked in between its legs. That’s how I felt anyway. She looked like she was seeing a ghost. We stood and hugged for a few seconds. I didn’t feel like letting go. “Hi,” I said with my eyes falling to the floor. “Oh, Maya. I think about you all the time. But look at you. You’re doing it. You don’t have a choice. I don’t know what to say. You are such a good person. You didn’t deserve this.” Enter my hysteria here, that I tried to keep under control. “I don’t know what happened or how this happened or why this happened. I did everything right. I did everything I thought I was supposed to do in this life, to make sure I had a good life. And this happens to my baby. How??? Why???” No answers were given of course. Just words of sympathy. Maybe pity?? I hope not pity. I never want pity from another person. I stayed for a few minutes longer as it was a short visit, as it only needed to be. She told me she felt honored that I came by to see her. I wanted to say, “Honored? Not honored. It’s just me. I’m just the same. I would always come by to see you, when I was visiting from out of town. I do not want you to see me, so differently, that you are honored that I would pop by. Please, don’t think of me like that. As the broken-hearted woman you see in front of you. Please think of me as just being the same person I was before all of this happened.The girl you used to know, who didn’t know what real pain, felt like. Can’t I go back to being that girl? Please? I cannot. That life is over. That life, will never exist again. Only a new life exists now and I’m not sure what that looks like. It looks different to me, everyday.
Tomorrow is almost here. I have a favor to ask of all of you lovely little blog readers. You all know my Dr. JoRo and how I fully embrace the fact that she has been one of the people who has saved my life through out all of this. Before her, I had no hope at all. She is one of the only people in my life, who has given me the gift of hope back. Tomorrow, her baby girl, Cheyanne, would have been 18 if she had not died during birth. It is because of her death, that I have my Dr. Jo and I so hate that. I would give anything for it to not be this way, and to not have ever known Dr. Jo, so she could just have her daughter. But because of the cruel fates of the world, it is not this way. Dr. Jo has taken tomorrow and turned it into to International Kindness Day. She has been doing this for a very long time now. So long now, that over 1 million acts of kindness have been done around the world. Can you please take tomorrow, and do something extra nice for someone? Even if it is just smiling at a stranger or holding a door open for someone. It doesn’t have to be anything big, but even the smallest acts of kindness, can change the world. Thank you, lovies. You are the best blogosphere friends a girl could ask for. I love you all.
G’nite Ronan. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll. I love you to the moon and back.
xoxo
Your song for the night. Because Quinn told me so.
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
Cowboy Boots and Little Big Baby Steps
Ronan. 3:30 a.m. like clockwork, I am up. I have been sleeping well still, but it’s at this time that I am up and my mind is racing/missing you so badly that I cannot fall back asleep. I have a ton to do tomorrow, too. Seems like I have been doing a lot lately. I worry that I am not taking enough time to be sad/grieve for you on the days that I am so busy and so productive, that I don’t have time to sit around and cry for you. It feels wrong, but I also understand that in order to change things, Ro, I have to be strong some days. I cannot give in to my grief, everyday. If I did, I would not carry out what it is I am here to do, which is a lot. It is so much that I know I have people around me going…”Yeah, good luck with all that.” I don’t need luck. My luck ran out a long time ago when your disease took a turn for the worst. The only thing I need is the one thing that I have a never-ending supply of. That is passion. Passion for you which is going to get me everywhere. It is going to help me achieve everything that I set out to do for you. It is going to change the face of this disease. I already know this.
Today. I don’t even know what I did. I sat at my Starbucks office for hours. I met your Sparkly for a bit to take a break and to talk to him about some things I have going on this week. I went to him for his advice/insight/let’s play devils advocate. He’s always good for that. I told him my idea/ideas/the few people I have reached out to and who have reached out to me. I smiled a lot today around him which does not happen much. I always seem to be freaking crying. He looked at me and told me, “Look, your pain, this pain, is so much. All of your anger and sadness that you are feeling, it is never going away. But look what is happening. If you can channel it into the right direction, like you are doing, you are going to help so many people. You are going to make a huge difference. I know you can do this. You already are.” Then he made me laugh by saying, “And what in the hell are you wearing today? Your dress, cowboy boots, bright nails, and a smile? You are something else.” I know I am something else, because I am your, mama, Ro. And I know you always loved it when I would wear my dresses and cowboy boots. Little things like that, remind me of you, and make me happy. You would have insisted on wearing your boots, too. And I know your nails would have been painted, just like mine. You loved your fancy nails and my who cares if you are a boy, let’s go get a pedicure date. Maybe by this age, you would have stopped letting me paint your toes, sparkly. I hope not. We always had so much fun doing that together.
I ran home, dropped off my 50 notebooks filled with my evil plans to destroy the world, and went to pick up your brothers from school. I got to hear all about how Quinn gets to go to a pizza party for having so many points for his reading tests and I got to see Liam’s 100% on his spelling test. Little overachievers they are. I thought about how lucky they are, to be alive and living life as it is such a beautiful thing. I don’t think many people realize this. I think so many people, take it for granted. I am reminded of this, every second of every day due to not having you here anymore. It is both a gift and a curse. We got home from school and we did their homework. I got them ready to go to the Suns game with their basketball team as an end of the season treat that they do every year. Your daddy was supposed to go with them, but had your Papa take them instead due to a dinner I had to go to and he wanted to come with me.
Your daddy came home from work and ground rules were laid. “Are you sure about this?” he asked me. I told him that I thought that I was. “How do you know this is the right person, to be talking to?” I just sat and looked at your daddy. “My gut. My instinct. Because I have a feeling and it is a strong feeling. Because I met this person once and something about his eyes, told me I could trust him and that he was a kind, honest, good person who can give me some direction and insight. Because I am following my heart and that has gotten me this far.” We left for dinner. A dinner where we talked about you and some ideas. A dinner where I was told 2 things that I have been learning through out all of this which are, never take no for an answer, because there is always a way, to get a yes. And that word passion came up again. I was told all things are possible, when you have that and you choose to dream really, really big. It was a dinner filled with love, big dreams, big plans, yes you can do this and here is how you get it done, laughter, tears, support, and teamwork. And all of this came from going off a gut feeling that I had. I left that dinner holding on to your daddy’s hand and was reminded that I have the best teammate ever. Him. He looked at me and goes, “Well, what did you think?” I smiled at him and told him I was really glad that I listened to my heart. He told me that he was too. We made some plans on how we will proceed and the steps that need to be taken next. Little, big baby steps I’m calling them. I am trying to keep up, to move slowly, but some very big things are happening that I just have to keep up with. There is no stopping this now, Ronan. Moving forward is the only way to go and I cannot wait to see what you throw my way, next.
It’s 5 a.m. now. I need to try to sleep for a couple of hours. I love you. I miss you. I really, really, hope you are safe. I’m so sorry I can’t take care of you anymore. I am trying to take care of you, down here, there only way I can now. By doing all of this, for you. I won’t let you down. I love you, Ronan. Sweet dreams.
xoxo
Happy Fucking Holidays!
Ronan. This is all too much. The Holiday Cards are coming in the mail. I have brought myself to open the ones that have come, only they make me sick to my stomach. Which in turn, makes me feel like a bad person. But I throw up anyway. What do I expect? To I see a picture on the card of an unhappy family? To see a picture on the card with a bald baby who has cancer? To see a picture on the card, that tells the real story of what is going on in the happy families lives? To see the picture of the family like us?? No. The stories on all the holiday cards, tell the same story. Perfect story book life. Beautiful families. Glossy hair. Whiter than white teeth. Perfectly dressed. Happy. Healthy. No worries. No stress. No fighting. No tears. No 3 year old child, who died from cancer. A fairy tale. Some come with a story such as, “Our Year Summed Up in 2011.” They say things like, “Johnny graduated high school, Summa Cum Laude! He is off to Harvard next, where he plans on becoming a doctor. Susie, our oldest daughter, is engaged! The wedding will be in Hawaii, Spring 2012. Bob ran his 5th Marathon and is retiring next year. I, myself am keeping busy with all of our healthy perfect grandchildren!” No problems exist in these letters. It is the fluffiest of the fluff. I would like to hear a real story, for once. It would be, refreshing.
Maybe I will send out a holiday letter this year. I’ve never done it in the past, but there’s a first time for everything, right?? Maybe I will send out a real holiday letter with a real picture on the front of it. It will be a picture of our family. All broken and black. Sitting around your Urn, holding your GiGi and Captain Rex. We will not smile in the picture as the fakeness cannot hide what truly exists. An ocean tide of sadness, only to fall into a black abyss. What will the letter say??? This holiday letter of 2011. How do you put into words, how your world has been shattered?? As nothing else matters. Let’s start off by telling the truth. The truth of this ugly thing called cancer that took you and your little life as fast as can be. But oh no! It didn’t happen! Because cancer cannot be! It cannot exist in the lives of those so perfect and true. It cannot exist because there was you. I’ll tell this holiday story of 2011. But friends be warned, it is not going to end up with Ronan in heaven. For those of you, offended and hurt, please take a moment and stop your words. For this is my story and it is not yours to tell. Sit back, shut up, and be prepared to go to hell. Because if a hell truly does exist, it is here, it is now, it is living this life as a bereaved mommy and daddy. Not knowing what to do during this holiday season, where the Christmas carols are cruel, where the blinking lights on the decorated houses only bring tears of sadness, not of joy. Because everywhere you look, you are reminded of what is missing….. the one thing that was true. So here we go, little Holiday Card of 2011. If I had my way, we would bypass straight through this day. Fast forward but to what? You aren’t coming back. So here I sit, preparing for this season. Forgive me if I am not shouting, “Merry Christmas!” from my rooftop. I will be the one at the top, shouting, “Fuck you cancer!” instead.
The Thompson Family 2011
Our year was off to a wonderful start. We spent the first few months, with Liam and Quinn finishing up kindergarten. Woody is loving life as an attorney and being the father to 3 boys. Maya kept busy taking care of the boys and chasing after Ronan, who is more than a handful but in the best way possible as she enjoys every minute of him. We spent part of the summer in San Diego, taking a break from the Arizona heat. Maya, Liam, Quinn, and Ronan then headed back the small town, where she was raised to spend a few weeks with her family. She and the boys spent time in Washington State, swimming in rivers, picking berries, exploring caves, fishing, and enjoying nature and the simpleness of life. They returned back to Arizona as the school year was approaching. Ronan’s little left eye started to look droopy. We took him to the doctor. We took him to two Ophthalmologists. We took him to Phoenix Children’s Hospital. He had an MRI. He had a CT scan. The news was not good. We were met by an Oncologist. Your child has cancer. We went into shock. What do you mean, our child has cancer? Our perfectly healthy little boy, who has just spent the entire summer, running around as if he were the healthiest child on earth? But he was not as cancer had invaded his entire body. He not only had cancer, but Stage IV cancer and it was very aggressive. We researched our options. We started treatment. Our perfect little life, was turned upside down within minutes. Everything changed. People swooped in to help. So many beautiful people. The twins were forced into a new reality. All they had ever known was a happy, safe, loving house. It was now all taken away and Maya and Ronan spent months living in and out of the hospital. Quinn asked us, his parents….” Is Ronan going to die?” We both just looked at him, shocked. Of course not, Quinny. We have the best doctors taking care of him. He is going to be fine. We both believed this. Ronan. Have you met our Ronan, you asshole cancer? He is the toughest boy out there. He never cries over a thing. He never takes no for an answer. He is beyond strong. You don’t stand a chance. Look how well he is responding to treatment! The chemo is working! Now it’s off to New York, to get the base tumor out of him, by the BEST surgeon they say. We all spent the holidays, together in New York. It was beautiful. Ronan was getting better. Ronan was happy. We were all together and that was all that mattered. Surgery was a huge success! Ronan did great. He was up and walking around, in no time. We told you, cancer didn’t stand a chance. It was time to return back to Phoenix. Our last round of chemo, or so we thought. One more round, than scans were next. We couldn’t wait to see Ronan’s progress. Ronan made progress indeed, but it was not what we had hoped. Too much cancer was still left. The stem cell transplant that we had hoped for, was a joke. Time to make a new plan. A better one, right? Because the option of cancer winning, was not a possibility. Maya, Woody and Ronan all flew to San Francisco, Philadelphia, and then to New York. Let’s do another round of chemo, and then it’s off to the Big Apple. Where dreams come true and the city where Ronan will get better. Another round of chemo in Phoenix. Off to New York. Ronan’s leg is hurting. The cancer is getting worse. We started him on radiation, to make the pain subside. Our little brave 3-year-old, left in a cold room. Alone. 14 rounds of radiation. No sedation necessary. We would kiss his little pouty lip, give him his pistol and Captain Rex. We would leave his side while he tried to be brave but we saw the little tears as they slid down his cheeks. We watched our little boy, on the other side of the wall as the radiation would start. We talked into a microphone. “We love you, buddy. We’re so proud of you. You are brave and strong. Hold still. 10 more minutes! We love you, Ronan.” He would lay there, so stoic and still. Braver than most men, 3 times his age. We started another chemo. ICE as they called it. A mixture of poison, he had never seen before. It was sure to work. We finished the round. It wiped out his immune system. Inpatient at Sloan for 23 days. The time passed so quickly. We had a ball. Forget we were stuck in a hospital. Forget it all. Pistols were shot. Costumes were worn. Books were read. Cuddles were had. We made the best of each and everyday. We were just so thankful, to be together. Scans were next. Let’s see what this ICE can do! Dr. Brian Kushner…. is ready to speak to you. Guess what he said? He didn’t have to say it at all. His eyes told the story, of Ronan’s cancer and all. Back to Phoenix with Ronan we returned. We’re not giving up as we watched the others, walk away. There is still HOPE! He is so feisty, today! Let’s fly back to Philly! Dr. Mosse is there. She will help us and it will all be o.k. I’m so sorry, she told us… there is nothing I can do. Back to AZ, not willing to accept defeat. But now, Ronan is not getting better and all he wants to do, is sleep. Hospice is here, at my lovely house. Get those people out of here Maya says to Woody…. it is not time for him to go. Get us to San Diego, it’s time to put on a show. Before San Diego, a little stop we must make. At a place called The Ryan House, a place that is safe. Ronan is hurting, his pain is out of control. These people can help him, until we can get him better…. radiation we will start. Again.”Rub my leg, mama.” So Maya does. She spends a week, rubbing Ronan’s leg until it was too cold to rub. Lots of people came by. But for what? Not to say goodbye? Ronan is going to be fine. He’s just tired, you’ll see. Once we get him to San Diego…. he’ll start to feel better and get a fresh start. But Ronan’s not walking, eating or drinking. More Ativan is given. Keep him comfortable. Tell him all the things you want to say. Tell him how it’s time to stop fighting, it’s time to let go. His little body has had too much…. it’s time to go. His little eyes, give one last flutter. His lips are kissed, he is bathed and redressed. The gurney is here, to take him to rest. Promises are made, ones that you will keep. Or so you say. It is now something that we have to remind ourselves of, everyday. For our lives have stopped, but for others they go on. All while this peaceful earth, is without our little Ronan Sean. Birthdays come, Halloween too. Thanksgiving has passed and now at last, the biggest holiday of all. One where millions of HAPPY HOLIDAY cards, will be sent out to all. Did you get ours this year?? Oh, you did not?? I’m so sorry. It must have gotten lost. Lost in the shuffle of our new, lovely life. One that is filled with sadness and despair. Happiness exists for those to see. But have you taken a good, hard look into our eyes?? If so, you know the truth. Our eyes will never be the same, that is so easy to see. The world didn’t stop the day our baby died…. but for us it did. We are all hurting and so scared inside.
Oh, 2011… what a year, indeed! We hope next year, will be a bit better. But living life, without our Ronan seems like a sick joke. So, please forgive us if this Holiday Card comes off quite brass and rude. For this is our life and HAPPYHOLIDYSMERRYCHRISTMASLOVEJOYPEACEONEARTHHAPPYHANUKKAHFESIVUSFORTHERESTOFUS does not exist this year.
And cancer, can fuck off. But peace on earth!!!!!!!!!!!
Love Always,
The Thompson Family
Maya, Woody, Liam, Quinn, and RONAN. Always Ronan.
Serenity now
Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.
I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.
Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.
I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.
Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.
xoxo
All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old
The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine
Tell me that you’ll open your eyes [x4]
Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time
Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine
Tell me that you’ll open your eyes [x8]
All this feels strange and untrue
And I won’t waste a minute without you
I heart NYC
We had the most gorgeous, smooth, flight today. Not to mention, we made it to NYC in 3 and a half hours, didn’t have to deal with security, lines, people….. we just drove right up to the jet and aboard we went. The pilots were amazing and they even let Ro co-pilot the plane! He was in heaven and I was so relaxed, calm, and felt a sense of peace that I have not felt in a very long time. Just knowing that Ronan was on a private jet, without germs or 300 other people was the best gift I’ve ever received. Again, thank you Mr. W…. when all this is said and done, I hope you can meet our baby boy so you he can look into your eyes, and tell you thank you. We are so grateful to you and what you did for our family.
We arrived at The Ronald McDonald house this evening. It is quite a sight and a very happy place, all things considering. They really do it up for Christmas and make everything extra magical. I am thankful that places like this exist. I don’t know what we would do without it. Auntie Karen came and met us and we grabbed some pizza nearby. We then she came back here and she helped me unpack and organize. Feels like home ready:)
Ro is asleep and I’m going to try to get some shut eye too. We have to be at Sloan very early in the morning so Ro can have some blood work done. Just wanted to let you all know that we are safe, thankful, and so happy to be here.
Sweet dreams, angels.
xo
ROCKSTAR RONAN 