Breaking rules, changing Holidays

Ronan. Hi baby. Another day done. Looking back on todays events, although nothing major happened, it seems like forever ago. If I were to write a handbook on losing a child, because there seems to nothing out there about this subject, one of the things I would write about is how slowly time passes by. How the hours just drag on, and so do the days, months and I am assuming years as well. By the time I die, I’ll bet I’ll feel like I’ve lived hundreds of lives. As of now, I don’t really feel like this is a good thing. I’m just tired. And sad. I think I’m also starting to realize that I don’t think I will truly be happy again. I don’t think I will ever know pure bliss again like I knew before all of this cancer shit. Before the loss of you. My life, at best, will be filled with moments of happiness here and there, but the happy that once existed before all of this will never be again. Maybe this will change as time goes on, but I just don’t see how that is possible.

What did I do today?? No clue. Woke up. Didn’t want to. Texted Liz to see if she wanted to walk down to the Del to grab a coffee. She did. Quinn came with us. We got coffee and some yummy but very bad for you pastries and sat and ate them at a table outside. A girl named Katie came up to me with her little boy to introduce herself and to say how much she thinks of you. It was so sweet. They both were wearing their Rockstar Ronan bracelets. It made me smile and my heart melt all at the same time. Everybody loves you so much. Even strangers whom have never met you. It really is amazing all the love and support that has come of this. I will forever be grateful and humbled.

After our coffee, your daddy wanted me to grab him some bagels in town. Liz headed back and Quinn went with her. As much as I love being with your brother, the time to walk alone was nice. But then something weird happened. Something that I should probably get used to, but it still annoyed me. I was paying for our bagels and I felt like a hole was being burned in the back of my neck. I glanced to the side and there sat a family. A mom, dad, and three older daughters. They were staring with their sad eyes and talking in low voices. The girls had their backs to me, but were turned around in their seats while they all gawked. I don’t know if gawked is the right word here, but I’m using it anyway because that is what if felt like. At first, I thought is was my imagination so I just went on with my business and paid for our things. I could feel them all still staring, so as a natural reaction, I glanced their way to see if it was indeed true, and not just me making things up in my head. It was true. Once they saw me look back again, their eyes fell to the floor and they avoided anymore eye contact with me. I quickly rushed out of the bagel shop after that feeling very sad. I get it. Coronado is a very small place, a mini Phoenix. I know people know about you and just don’t know what to say. I know a lot of people just choose to say not say anything and that’s fine. But just a smile would have been nice. That way, maybe I wouldn’t have felt like a zoo animal on display. I hate the looks of pity. I understand the looks of sadness, but the pity looks only make everything even more painful. The looks of pity followed by awkward silence. I’m not a fan of that at all.

I walked back to the Shores trying not to get too sad about that I didn’t have you following behind me. I pictured you running on the boardwalk, doing something naughty like stepping on all the flowers. I pictured myself chasing after you, laughing, but trying to be stern about teaching you to respect nature. As tears started to form, I saw a woman walking in front of me, carrying a Paul Frank monkey bag. The tears stopped. I smiled instead. Then I got to thinking about life and how what if everything that happens is carefully orchestrated. That woman, that stranger, was put in front of me, in that single moment because I wasn’t supposed to be sad. She was put there to make me smile and think of you in regards to something that reminded me so much of you, in the form of happiness. My head starting spinning then and I took a deep breath and thanked you.

I came back upstairs and did my best to get on with the day. I failed. I sunk into bed and fell asleep for an hour. After kicking my own ass in my head, I got up and agreed to go to the beach with your brothers and daddy. It was warm out there today. We played beach darts, football, and I snapped a bunch of pictures. After a couple of hours, your daddy and brothers headed back up to the condo. I stayed down on the beach to finish my book. I now get to read books about sadness and grief. I am looking for answers that I am never going to find. What I wouldn’t give to have some trashy novel in my hands instead. What I wouldn’t give to be completely consumed in a summer beach read. I finished, “The Other Side of Sadness.” It was actually pretty good and interesting. It talked about surviving grief and how there is no step by step guide, which I am slowly figuring out. It talked a lot about different cultures and how death is perceived differently in each one. If anything, the book was informative in that way. I got a few good things out of it. A mother talked about losing her daughter after 9/11. She said one of the things she worried about most was forgetting the memories of her. After a few years passed by, the author asked her what bereavement felt like, years after losing her.She said, “It’s a bit like a fading light. It grows dim, but it never goes out, never, not completely anyway. I find that enormously ressuring. I used to worry that someday the light would disappear that I would forget, and then I would really have lost Claire. I know, now, that doesn’t happen. It can’t. There is always a little flicker there. It is a bit like the small glowing embares you see after you see a fire dies down. I carry that around with me, that little ember, and if I need to, if I want to have Claire next to me, I blow on it, ever so gently, and it glows bright again.”

I thought this was really beautiful. What a simple, non-complex way to bring peace to your heart. I know your little light will never flicker out, Ro. But it was nice to hear it from someone else, who has lost a child. Which I have also decided, is the worst thing that can ever happen in life. I’ve honestly thought about this for some time now, trying to throw in other losses that could even come close to comparing. There is nothing. Losing a child takes the cake. Losing you is like losing a million cakes all at once. I cried on the beach today at a lot of things said in this book. I took the time to sit, reflect, and watch the oceans waves all while being engulfed in the sound of two little girls building a sandcastle right beside me. Their dad apologized for their loudness. I wanted to say to him, it wasn’t loudness at all, but music to my ears. I watched them play for a while and then was determined to finish my book, which I did. Mr. Sparkly Eyes would have been proud that I actually finished it. I was proud of myself. For something so little, the fact that I am actually able to finish a book now is a big deal. Who cares that it takes me twice as long now. I did it, felt emotions from it, and now I can put it behind me. Check mark, please!

I came back upstairs, showered and got ready to go to dinner. We went to happy hour on the island and sat in the bar with Liam and Quinn. We had a really fun dinner. There seemed to be a lot of laugher, talking, and engaging. We have talked a lot about holidays and what are favorite and worst are and why. We have decided to make up a new holiday to celebrate on Easter. Woody says we should call it Feaster and make it all about food. I agreed as long as we could worship a giant chocolate Easter Bunny and not have to dress up in fancy clothes. Liam wants chocolate covered everything, including bacon and Quinn wants to play games. Sounds like we are on the right track to turning this into a lot of fun. I think I’ve said before that most holidays seem meaningless now. Easter is one of them for us. Down with Easter; Feaster is born. I would like to take it and put your spin on it of course, buddy. We’ll have to come up with some things that you would have wanted to have. I’m imagining huge glass bowls filled with your favorite, Candy Corn. I may have some funny shirts made up to and anyone wants to come is invited. Feaster is the new Easter at our house. We will not be giving thanks to Jesus Christ. Sorry folks. That’s not the way this holiday is going to be celebrated. If you are offended, sorry. If you are cool, come over:) We have decided after losing you, Ro…. that life is too short to do things you really don’t want to do. It’s time to start making up our own fun rules and traditions as a family. The Thompsons march to their own beat and we are going to embrace that now more than ever. You earned that right, you loved to break all the rules, so that is what we are going to do. Some rules really are meant to be broken in life, only to be put back together, much better than they had ever been before.

After dinner, we walked around and the boys got cupcakes for desert. I stayed away from those due to my stomach issues. All of my favorite things, sweets, cupcakes, frosting…. destroy me. It’s as if my body is rejecting them. Oh well. I’ll take rejecting them rather than scarfing them down. At least my pants will still fit:) We came back to the condo, I got dressed for a dreaded run. It was chilly out but I did it anyway. Just 4 miles up and down the beach. I sat down for a while and talked out loud to you. I like to talk out loud to you. I did a lot of talking and crying to you. It felt good to listen to my voice say those words to you tonight, alone on the beach. After our little pow wow, I got my sandy butt up and finished my run. I showered and Quinn had asked to watch, “The Cove,” on my computer. I thought about it and said it was o.k. Why not educate him and his  young mind on how corrupt this world really can be. He’s already had the worst thing possible happen to him, he loves to watch, “Whale Wars,” so let’s do it. I watched it with him and explained this is why I have a hard time going to Sea World and swimming with Dolphins. It is one of the saddest movies ever and those Japanese “Fishermen,” need to be stopped. Watch the movie if you haven’t seen it. You will be so appalled that you will want to help expose what is going on. They are slaughtering those beautiful creatures left and right. It is beyond sicking and maddening. Especially to me now, Ro. After all the time we’ve spent watching the dolphins here, it makes me even more upset. What is wrong with people in this world?? Are they that selfish and greedy?? The slaughter of these poor innocent mammels has got to stop. How am I supposed to take on Childhood Cancer and this Dolphin slaughtering together?? I feel like it is my second calling in life. I felt that way when I first saw this movie. I am totally passionate about it and I think it is a beautiful thing for my boys to learn about. They have already learned about death in a way they should have never known, but now they can take this and turn it into nd learn how we need to respect these beautiful mammals, and how if you are passionate enough about something, that you can change the outcome. Sign me up! I’ll kick cancers ass and the japanese fisherman’s as well!! Bring it on, yo!!!

It’s going to take shit like this to get my ass out of bed in the mornings. I am planning on jumping back into boot camp next week. I need to email Tammy to tell her if I don’t have a reason to get up, I’m just not going to. She needs to be my reason for a while. Until I find a new reason. Although, waking up for her boot camps were always my favorite reasons to get up and exercise in the mornings. I hope she’ll save a spot for me:) Phoenix Adventure Boot Camp is by far, the best one in AZ. Tammy rules!!!!

Do you all see what I’m doing here? I’m slowly planning little things so that I don’t barricade myself in Ronan’s room and never come out. Ro, I can not, not, live for you. God. You would be so mad at me for my sadness and anger these past couple of weeks. You would be so mad at me for laying in bed. I’ve got to get up and do things for you. I don’t have a choice. I’m not willing to go down so easily and just die. Then what? Then everybody loses. I’m going to stay in this fucking fucked up world without you, and try to change some things. You would want this. You would be proud. As much as I want to escape into a non reality world, which means hiding in bed, ignoring everyone, not taking care of your Daddy, your brothers, our house…… I just can’t. I can’t have your brothers remembering me as that mom. They’ve been through enough already. I can do this, Ro. Just promise you’ll always be right by my side. I feel like you are, I really do feel you during the day. Please don’t ever go away, Ro. I already miss you so much.

Alright little buddy. My favorite not spicy monkey boy. I love you to the moon and back. I hope you are safe. I hope it’s a kissing day because I miss your sweet little kisses so much. Sweet dreams.

xoxo

I live my life for you

Ronan. Ouch. Ouch doesn’t come in the form of you hurting from your broviac dressing changes we used to do every week. Ouch doesn’t come in the form of the pokey shots we used to have to give you after you finished your round of chemo. Ouch now comes in the form of living this life. This life without you. It comes in seeing all of the little kids who are your age running around the beach. It comes in the form of seeing the beach towel today that had your Paul Frank monkeys all over it. It comes in the form of my obsession with taking pictures and you are now missing in every one of them. You are just gone. I’m waiting for you to appear in a picture of your brothers, right in the middle where you used to always be. It is beyond weird not having you around to take pictures of, Ronan. You were such my little ham and I used to absolutely die over talking pictures of you and your big blue eyes. I miss you so much it hurts. The pain is not getting any better. I still think it is getting worse as the days go on and I watch everyone else in life with their beautiful kids. I sit and wonder to myself, do they know how lucky they are? How lucky they are to be able to just hold the hand of their little ones to cross the street? How lucky they are to deal with a tantrum or go through the terrible twos? Those people I watch from my new set of eyes are so unbelievably lucky. I find myself sitting back a lot now and just absorbing my surroundings and wishing for you. I want to scoop up every little person I see and tell them I love them, because I do. They all remind me of you in different ways. The little boy with the blue eyes, the little girl with the mischievous smile, the laughter and innocence that these little people are so blessed to have and they don’t even know it. And they shouldn’t know it; but their parents should. I hope so much that all these people who are touched by your little life now take the time to be grateful for having something so simple and beautiful. I hope they kiss and love their kids so much more now. That is my wish for you, Ronan. After you passed away, I sat and kissed your little cold lips about a dozen times. I wanted to sit in that room with you and kiss you forever. Instead, I now get to sit and cry about how I will never be able to kiss your little lips again. You had the best lips too. They were so full and soft. Your daddy and I were talking about you the other day and how unbelievably perfect you were. I keep thinking you were too perfect for this world? Your beauty was unlike anything that I have ever seen before. I don’t understand why you had to be taken away from us. I will never understand this which is why something has to be done, Ro. After this summer is over, I’m going to figure out a plan. I have got to help other kids like you who deserve to survive this disease. I will do it for you and in your honor. I know this will not bring you back, but I know it is something that would make you proud and smile. I miss your smile so much.

Yesterday, I laid in bed for a long time and held your blanket and cried. I cry about you all of the time now because I am constantly feeling the emptiness of life without you. No more shock, no more numbness. Your brothers have been taking really good care of me though. Quinn likes to lay with me when I am sad and we talk about you. He falls asleep holding my hand much like you used to always do. You have the most amazing brothers, Ronan. I thank god for them everyday of my life. I don’t know what I would do without them. We are slowly finding our way back together. They have had such a great time being little beach bums with their cousins, Jake and Carter. It is so therapeutic to watch them grow close to their cousins. It gives me a lot of peace of mind. One of the most beautiful things to come out of this has been seeing all the new bonds and relationships that have been formed. I said this the other day to someone….. that one of the things I treasure most is how I’ve watched my beautiful girlfriends all come together and the new friendships that have come from this. The bond that they have all created is such a gift to me. They have all given me such a gift by helping me through this that I hope this gift is something that I have given to them. It’s been like watching a puzzle slowly come together and I know the friendships that have been formed will be friendships for life. We are all like sisters now. I watched the way they all came together for our family and for you. They fought and continue to fight for us. I never knew what a powerful thing love could truly be, baby. It was only when you got sick that my eyes were opened up to a whole new world. It is a beautiful world indeed, but I so wish I was learning this lesson through something else rather than losing you. I don’t know how we are going to heal without you, Ronan. I think our new life is going to have to drastically change. It’s going to have to have a much bigger purpose, a much bigger meaning than living in the little bubble that we lived in before all of this. We are working on the healing part of this a now. Baby steps. The ocean. Family time. New adventures. Simpleness. I can’t tell you how exactly we are doing this, but the fact that we all get up everyday and somehow manage to smile is a good enough start for me. It is all we can do right now, Ronan.

Today, Quinn and I were taking our usual walk to Starbucks. I had on my sunglasses, fedora hat…. my usual, “hello I just woke up look on and I’m going into town.” We were walking on the boardwalk and this girl and her boyfriend passed us. I only noticed her because she had some flannel shirt on and I thought how cozy and cute it looked. A minute later, I heard someone running up behind me and she goes, “Maya!” I turned around and it was the girl in the cute flannel shirt. She then told me how she reads my blog. I was shocked  she recognized me and I asked her name and introduced her to Quinn. She introduced me to her boyfriend and I asked where she was from; she said Arizona. It was so random and so sweet. So to Allie today, thanks for having the guts to run up to me and say Hi. It was really nice to meet you:) Enjoy the rest of your time here, although I think you are leaving to go back to AZ soon. I hope you had a nice trip here.

After we returned back to our place, we met up with Stacy who is here for the week with her kiddos and Kenny. So fun to have them here with us. We split up since I had a surfing date with Katie and Sarah. We took lessons today and I’ll have to say it could become my new obsession. For the first time in 9 months, I had to fully forget about everything in my life and focus on fighting to get up on that board, stay up, and concentrate like I have not had to concentrate on just myself in a very long time. We stayed out in the ocean for about 3 and a half hours today. It was just what I needed and I loved every second of it. I’ve always wanted to surf. So stupid that I’ve waited so long to try something that I’ve always wanted to do. There were always too many excuses before. Well, not anymore. I’m done making excuses, Ronan. I’m going to live a life full of passion and adventure and I’m going to do it not only for myself, but for you too. Life is too short to let things hold us back. All fear is out the window. I’m done being scared. You were never scared of a thing in your life. You have left me this gift and I will keep living this way for you. I owe you so much for teaching me so many lessons. You are my hero, Ronan. You are my everything.

That is all for this evening little man. I love you to the moon and back. I will keep you in my heart forever. Sweet dreams, my love.

xoxo

The next person that tells me Ronan wants to go home, to heaven, can piss off

Holy Fuck. How did I get here? I’m at The Ryan House; the most beautiful place we have been so far on this journey because my son is going to die? And everybody knows this except me? Am I in that movie, “The Truman Show,” where everything is just pretend and I’m some experiment being watched to see how I’ll react to everything? Please, please, please, somebody tell me that’s the case. I don’t think it’s even hit me what is going on, why we are here, and why everybody has been crying, until now. Until I stepped outside tonight to get Woody some things from his car and in the room across from us was a baby who was on the verge of her last breath and I stood and watched while it was happening. The door was open and I could not look away. The nurses were crying, parents, family, everyone was hovering over this baby. They were preparing for her to take her last breath. In that room, I saw myself, huddled over Ronan, begging him not to go. Is that my future? Does everybody know this except me? Is this the reason that The Ryan House was full of my friends and family today, and when they all came into Ronan’s room they could not hide their tears. Am I the only one who thinks this is not going to happen?? Even though I am hearing whispers of he has days left. Who are they talking about? Couldn’t possibly be Ronan. He gave me the biggest smile today and told me he loved me to the moon and back. So what if he cannot walk anymore because his legs hurt so badly. I can fix that with Radiation, right? Just like I fixed his arm. So what if he is not wanting to eat anymore, I can fix that too with his all his favorite things like Strawberries and Whipped Cream. I can get him to eat for me. I sent Woody and Fernanda a list of people, resources, other doctors to call today. Woody has been on the phone all day. I’m not accepting this until I hear there is nothing more to do from 100 different people. I’m not giving up. I am his mom, I can fix anything. That is my job and I refuse to fail.

I have not been outside in a couple of days I think. Tonight, I found myself on the patio, curled up on the phone, bawling to my Mr. Sparkly Eyes. I don’t think I screamed, but I remember sobbing and listening to him cry with me. I told him over and over that I cannot have Ro leave me, I cannot live without him, please make it go away. He told me I could yell at him, how sorry he was, and begged me to sleep as I cannot remember the last time I really have. It’s been a couple of days I think. I told him how could I sleep, how could I possibly close my eyes, what if I missed Ronan’s last breath?? I will never forgive myself. I’m not going to miss any time that I have left with him although I forced myself to come outside and write tonight while Woody sits with Ro. You see, if I didn’t, I was on the verge of packing up all of our stuff and getting Ronan out of here. Maybe if I take him away from The Ryan House, he won’t die. My thoughts are not rational, but they seem realistic to me and I could seriously see myself grabbing him and never looking back. I don’t want him to die here. Even though everyone is insisting this is where we should be. I want to be home with him, where he is safe and none of this is real. Being here, magnifies everything by a billion. I don’t like the look of all of the sweet nurses, doctors, and whomever else has been hovering about. They all have the same look of pity, sadness, and no hope. I get the feeling they don’t see miracles happen very often with children that come in here with cancer. Why can’t Ronan be that miracle? Why is that asking too much? We are nice people, we deserve a happy ending. There will be no happy ending of this story if my baby is ripped out of my arms. What will they do with him? Where will they take him? I’m not letting him go. They will have to pry my arms off of him with a fucking bulldozer. I’m not letting him go. Call the fucking psych ward because that’s where I am going to end up if this all goes down the way everyone thinks it is going to.

“Everything happens for a reason.” BULLSHIT. “You were given this because you were strong enough to handle this.” BULLSHIT. “God has a greater plan for Ronan.” Bullshit. “Ronan wants to go home, where he belongs, to Heaven.” MOTHER FUCKING BULLSHIT. Who the fuck came up with these sayings because the next person I hear say them to me is going to get punched in the face. They may be true if death is not outcome of this. But if it is, then I am going to write down those sayings on a piece of paper and burn them to the ground. Please think before you speak those words. They are the sickest things I have ever heard. Ronan Sean Thompson does not want to go home to heaven where he belongs. I can guarantee you with my life that he wants to stay at his home, in Phoenix, Arizona with the best mommy, daddy, and brothers alive.

I somehow stayed so strong today, even with people buzzing in and out, wiping the tears from their eyes. Stacy, Pam, Heidi, Tiffany, Jennifer, Sharon, Marcia, Auntie Karen, Sister Mary, Dr. Campbell, Katie, Macy, Sarah, Fernanda, Nana, Papa Jim, Aubrey….. they were all here. I think Niki, Heidi and Christy came by too, but I cannot remember seeing them. I smiled and remember saying to New York Miss Macy, “No tears, my dear.” She looked like she could have cried a pool of water right there in front of me. I’m so confused. I must be in shock still. I don’t remember much else about today except for sitting in bed, and taking care of Ronan. I remember a few people coming in and out. I remember eating my one thing that I have eaten in a week, my favorite things, chips and salsa and I remember throwing it up. I remember holding Quinn on my lap and watching him cry as I tried to explain to him as little as possible what was going on. He tried so hard to not cry, but I told him how crying was so good for us and how we cannot keep our feelings bottled up. And now I sit here. With Quinn and Woody inside, and Fernanda is here too with her overnight back so I can have a break and maybe sleep while she watches Ronan for me. I don’t really know what is going on. I know I have the most amazing friends surrounding me but somehow I can only find the courage to see a few faces.

I want to go home but nobody seems to think that’s a good idea. I don’t know what to do as the twins and the way they remember everything is the most important to me, but I also want to respect Ronan and take him home to be the only place he wants to be. I don’t know if I want strangers surrounding him if for some crazy reason he has to leave me. I just want him in my safe bed, in my safe house, the place he loves more than anywhere. I want that not only for myself, but for him as well. I’ve been so open and honest about everything and not the least bit private, but now I want to protect him from strangers hovering about. I don’t want those faces around my baby as he takes his last breaths. I feel a jailbreak coming on. And Ronan has his pistols in his hands to bust us out. Not that we would really need them, because I know the people here are so respectful of what you want to do. But a little cowboy action never hurt anyone.

That is all for tonight as I have officially lost my mind due to lack of sleep and oh, just the little fact that my son has cancer and I am just supposed to sit back and watch him die. FUCK YOU WORLD.

But I love you all as always, as long as you don’t say any of those idiotic things I mentioned above to me. Even if you think them, please don’t say them. They don’t give me strength at all. They even piss my husband off and it takes a lot to get him pissed.

G’nite all you cowboys out there. Sweet dreams.

xoxo

My sweet friend, Charisma sent this to me from her friend, Amber. I love it. Bittersweet. I love you, CC. I love you, Amber and I don’t even know you.

Ronan. Here’s a little prayer for Ronan,  beautiful eyes. Seeing the other side. Courage beyond any man.
He will be there. In the trees. In the leaves. It will make her live life, hate life, love life beyond…
Rebirth. Always more chances.
Those eyes. Those eyes. Those eyes.
Fabulous eyes.
We will light a candle at dinner for Ronan tonight and celebrate life.
~Amber

Happy Easter Ro baby

Oh Ro baby. Happy Easter. I’m not going to lie. It was a hard day today. At one point, I did not think I was going to be able to get out of bed. I wanted to spend the day hiding under my covers. It took me a few hours once I woke up, to get things started for the day. I was barely functioning. We planned on going over to Woody’s Uncle Larry’s house where all the cousins were going to be. In my head, I kept thinking, how am I going to face everyone? I’m way too sad. But I knew how much my twins were looking forward to it and I knew it would be good to be surrounded by our loving family. Woody and I got the boys ready and dressed and then got ready ourselves. Out the door we went and I turned my frown upside down; as best I could.

The day was spent watching the boys playing, laughing, running, swimming, and enjoying their cousins. Ronan even got a little wet and ran around as much as he could but stayed by my side most of the time. It was good to be with family on such a special day. There was a sadness in the air, but it was overcome by the beauty and strength of Ronan. I refused to let cancer ruin our beautiful day. Ronan was happy, smiling, and laughing while throwing water balloons at his cousins. Today, cancer did not win. Today, we held our heads high and enjoyed his little life to the fullest.

Ronan was ready to go after a couple of hours so Woody and I took him home while the twins stayed behind to play the rest of the day away. We came home and Woody ran out to do some things which left me here alone with Ronan for what I thought was going to be some quiet time. No quiet time allowed as I was told by him. He was all ready for a Star Wars battle so that is what we did. Fernanda stopped by to drop off some of her amazing confetti filled easter eggs which Ronan smashed over my head. She had her Brando with her and I wanted to just eat him up. Cutest thing ever. He was dressed in a tee-shirt, his skinny jeans, and cowboy boots. She has the most beautiful children and I was so happy they stopped by for a few minutes.

After Fernanda stopped by, I had texted Gay  earlier to tell her Ronan was really wanting to see Cal. She then came by about an hour later with her boys, Cal and Chet. Ronan was over the moon. They played and Gay helped me get a lot of the little things around the house put away. I am so thankful for my wonderful friends and the way they are handling all of this. They all refuse to give up and are more than rising to the occasion. I will never stop being blown away by all of their support and love. We are so blessed to be going through all of this with the most amazing people by our side.

I am finding laughter in the stupidest things these past few days. Not much is making me laugh anymore and laughing is one of my favorite things in the world. Woody has put on our “South Park,” DVDs. So stupid, vulgar, and immature…. but I have been dying laughing at them. Trey Parker and Matt Stone = Freaking geniuses. I am such a sucker for some dirty, foul-mouthed humor. Works every time. Even in my numb, fogged induced state of mind.

Tonight, we did normal family things. I got to tuck my Liam and Quinn in to bed which is such a precious gift to me now. I spent today washing all of their sheets and duvet covers. Felt so good to do something normal. I love laundry and I could never get tired of doing it. It is my favorite normal chore in the world.

I thought about a lot of you today, even the people I don’t know. I imagined your faces that I have made up in my head and wondered what you were doing on this day. I imagined a lot of your kids dressed up in their Easter best, a lot of you at church, and all of you watching your kids with your love for them pouring out of your hearts because you know how blessed you are to have them and I know how even more thankful you are for their health. Thinking of you all made me happy and warmed my heart. I hope I get to meet you all someday. I would like to give you a smile and a hug and thank you for supporting our family, whom you don’t even know. I am so thankful for all of you as well.

Tonight, after all of my babies are asleep I am going to go and kiss my husband and thank him for being the best man in the world and tell him how proud I am to be his wife. He deserves to hear this everyday. He is simply the most amazing man living on this planet. I will always think I am the luckiest girl alive that the stars aligned and we met when we did. I’ll never forget our first date and how I just knew he was the one. 11 years later and here we stand, going through the hardest thing of our lives, but we are going through it together, not apart. As much as I would like to put up my walls and as much as I try, Woody always finds a way to knock them down and I let him back in. He is the best thing that has ever been mine, that Wooddawg of mine. Mine forever. No matter what we have to go through. We will never let go of each other.

Sweet dreams to you all. I hope you had a beautiful day with your beautiful friends and family. I love you all so very much.

xoxo

This is from my sissy, Liz, tonight. I love you so much, Liz. This is just what I needed to hear.

Easter represents rebirth and new beginnings..how appropriate. Love you and your family with all my heart. And remember, we don’t call Ronan a rockstar for nothing!! 🙂 xoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxooxoxoxoxoxo

Dear Dr. Kushner-

You want me to give up on this? You gave up so easily but I will never. Did you forget the most important factor in your decision making? Him. He is not like other little boys. He is our miracle, our Rockstar, our gift. This is not over and it breaks my heart that you stopped believing. Miracles do happen; everyday.

Fondly,

Maya Thompson

Just another hospital night, yo! I don’t miss my bed at all!

 

Tonight, my heart is peaceful and content. My mind is quiet; which doesn’t happen often anymore. Tonight, I am once again filled with a peacefulness that everything is going to turn out o.k. I’m not sure why. I haven’t felt this way in a long time. I’ve been so caught up with my worrying and trapped in a dangerous place where the darkness tries so hard to take over. It consumes me most nights… especially hospital nights. Not tonight. Maybe it was the fact that I had a much-needed day out of the hospital today and these little breaks seem to help me. Maybe it’s the fact that Dr. Kushner and Dr. Modak came to see Ronan and could not believe how well he looked for having a 0 ANC. Maybe it’s the fact that I got to listen to Woody tell me how well Liam and Quinn did at baseball tonight. How when Liam got up to bat, one of the coaches told him to hit this one for his brother and he cranked the ball out of the park. Or maybe it’s the fact that I just spent the last hour walking the halls of the hospital with Ronan while we both carried our toy guns and shot every person that came in sight. Maybe it’s a combination of all of the things above. Whatever it is, it doesn’t matter. All that matters is it’s moments like this that keep me going, pushing forward, with my head held high. These little moments will carry me though to the other side of this awful mess. With Ronan in my arms the entire way.

Last night was rough. Rough as in I got very little sleep due to our stupid “pole” or “asspole” as I’ve decided to name it, going off every 20 minutes. BEEPBEEP!!!! BEEPBEEP!!!!BEEPBEEP!!!!! So. Freaking. Annoying. Every time this happens, I have to push our little red button and say, “We’re beeping!” The nurse either comes in right away, or it takes 15 minutes. Not fun for anyone. Our poor roommates included. The nurse also had to wake Ronan up twice last night to give him his oral morphine since they took off his Fentanyl patch a couple of days ago. They are slowly trying to wean him off all of his pain medication and he is now down to a really low dose of morphine. Try getting a 3-year-old to cooperate taking a medicine he doesn’t like, while waking him up from a dead sleep. Needless to say, there was a lot of screaming and fit throwing in the middle of the night. Brutal. Rough night indeed but we survived; once again.

Today, we had Ronan’s last day of RT on his arm. It’s nice to be done with that. It seems like it has really helped his pain and I am thankful. My mom came to the hospital, armed with a bag full of toys. For a small town mama, she is sure doing well getting around this big city. Proud of her 😉 I was able to leave the hospital and Ronan with my mom with promises of my return with new Star Wars guys. I went back to the RMH, showered, and got ready to meet my friend, Ellen for lunch. Ellen is the mom of Phoebe, our last roommate at Sloan. They live about an hour outside the city and she emailed me yesterday to say her parents were going to watch the girls for the day so she wanted to know if she rode the train in, if I could come and meet her. I jumped at the chance and we had a lovely day catching up. I loved hearing all about Phoebe and how she is doing. She is such an inspiration. They will both be at Sloan on Monday so considering Ronan is up for it, we will make sure we get over to the hospital to see them. Such a nice family who so does not deserve any of this and it sucks we are getting to know each other because both of our kids are dealing with cancer. Why can’t cancer pick on the real jerks in the world…. Hello rapists, child molesters, child abusers, murderers?? Cancer does not discriminate but it should. Leave us nice people and our kids alone. A-hole cancer.

After my day with Ellen, I walked the entire city in search of a couple of new Star Wars toys for Ro. He would have had my head if I had come back to the hospital empty-handed. Mission accomplished. He was very happy with my findings. I returned to find a very sweet boy waiting ever so patiently for me. Best thing in the world to come back to this dreary hospital life to. He melts my heart like butter. I also came back to find some beautiful mystery New Yorker had dropped off some goodies for us and I think, donated blood, as they left a little key chain that Sloan gives you for doing so. They also left the sweetest hand written card and only signed it, “A New York Friend.” Dear New York Friend…. who are you, you lovely person, you??? Would love to meet you and tell you thank you in person. Your gifts were so thoughtful and sweet. I had just run out of my stash of Coconut Water too. Thank you, my mystery NYC friend. You made this mama smile today.

Ronan has been so occupied tonight by watching things on YouTube. Mainly Star Wars things and we have been cracking up. I’m going to put a couple of his favorite findings on my blog. Hope you all enjoy them. Thank you, once again for your love and support. Thank you for keeping our family close to your hearts. It is such a gift to us. G’nite my sweet friends. Love you all!

xoxo

Empire State of Mind

 

I just spent the last 48 hours with Quinn and it was blissful. We woke up yesterday and I asked him what he wanted to do, as we had the whole day to spend together. He chose to go to The Empire State Building so we got ready for our adventure of the day. We stopped by Sloan before  as we went to say hello to my childhood friend, Jennifer, who came by to donate her platelets to Ronan. It was so nice to see her and introduce her to Quinn. We stayed for a little over an hour until she was ready to get started. We then headed out and grabbed a Taxi. It was a super busy Saturday there, as expected, but Quinn did so well and waited patiently to get to the top of the building. Once we were at the top, he was a little scared to go outside. It is so high up…. even made me a little nervous. I coaxed him into going outside and it was absolutely breathtaking. We stayed for a good hour and enjoyed the sights. Once we were safely back on the ground we hailed a cab and went and walked about SoHo and had dinner together. It was a perfect day with a perfect little boy. I bought him a journal at the Paul Frank store and he was so excited. He sat at dinner and wrote all about our day. It was adorable. After we finished dinner, we headed back to the RMH and then to the hospital to see Woody and Ronan. They opened up the playroom for us again so we could all hang out together. We stayed for about an hour and then Quinn and I returned home while Woody stayed at the hospital another night. I am so thankful that he spent so much time with Ronan while I had some one on one time with Quinn. The break from the hospital was nice as well.

This afternoon Quinn and I went to Delizia’s for his pizza (surprise, surprise) We ordered some to go for Woody and Ronan so we could bring it to them and let Quinn see Ronan before he and Woody got on their plane to go back to Phoenix. We spent some time in the playroom together and soon it was time for Wood and Quinn to leave. I tried to not cry but it was impossible with seeing how sad Ronan was. His little lip quivered and he buried his head in his knees. We said our goodbyes and I walked back with Ronan to his room. I sat and held him and quietly explained how Quinn and Dad would be back soon. My words didn’t matter or stop his little tears from falling. I let him cry and told him it was o.k. to be sad but it was my job to make him feel better. After he settled down, I talked him into taking a sponge bath. I filled up a tub of water and he ended up putting all of his Star Wars guys in it to bathe them before he took his bath. This occupied him for a good hour. We spent all the afternoon doing silly things like that and he finally laid down to take a little rest. He seems to be feeling better but his ANC is still at 0. Boo.

While Ronan was napping, my phone rang with a number I did not know, but I picked it up anyway. So happy I did. It was my sweet Charisma calling all the way from Australia where she is working. I was so surprised to hear her voice and so happy she called. She hasn’t been able to read my blog in a few days and just wanted an update and to see how we were doing. I updated her on some things and vise versa. She asked what our plan was and I told her that as of now, it was impossible to have one. We will have more of a plan once the results of Ronan’s scans on the 13 and 14th of April, come back. We will then decide what direction to move forward with all of this. Until then, we will just sit and wait and take things day by day. We will make the best out of each day that we have and take all the positives that we can get. It was good to talk to my friend and I told her to try to get some work in NYC so she could come and visit us. I miss her dearly.

My mom is taking the Red-Eye out tonight and arrives at 6 a.m. EST. I told her to just go to the RMH, get some rest, and we would call her when we got up so she can head over to the hospital. We can’t wait to see her and it will be so nice to have her here and her help. Now, if we could just get out of this hospital. I think we’ve been here for almost 2 weeks now…. without counting our 24 hours of freedom we had. Praying for his ANC to come up, very, very, soon. This hospital life is getting old for everybody… especially my little man.

For everyone who has been asking where you can mail things to I will give you the address to the RMH. It is

405 East 73rd Street, New York, NY 10021

Just address it to Woody, Maya or Ronan Thompson. You all are the sweetest friends/little rockstar fans/family. Thank you for all the well wishes, cards, and surprises you have sent us. Brings many smiles to our faces. I hope you had a lovely weekend. I’m going to cuddle up with my little bug now and try to get some sleep with him. Love to you all!!

xoxo

Look at the stars and how they shine for you

 

 

Ro baby is doing well. His ANC is still at 0, but his spirits are great. Sarah came this morning so I could run home and shower which is always a treat. Ronan and I have been playing a lot in his bed. I put on a puppet show with him with his Curious George Monkey and his Sock Monkey. He really giggled the entire time. Just as I was in the middle of this, Dr. Maze came up to say Hi. He played with Ronan and Ro was loving it. He was so happy and playful with him. Made me so happy to see him giggling and smiling. That man has the magic touch with my baby. We talked a little bit about how Ronan is so much older than his 3 years. He really is an old soul and has been so happy these past few days.

Sharon came up from the clinic and changed his broviac dressing for me because he only wants her to do it. Spoiled boy. Our roommate, who has the window view is leaving soon so I’ve requested for us to move over to that side of the room. I’ll seriously go crazy if I can’t have my window view for the entire week. Ronan is not even allowed to leave the room due to his cough. It’s hard being stuck in here all day and night without being able to go and play or at least walk the halls. BRUTAL beyond words. Ronan seems to be fine with just playing in his bed, bossing me around, and eating his 10,000 popsicles. He’s starting to eat again which is great. He is getting better, slowly but surely.

The room move was a bit of a fiasco. Well, not really. After being shut down by 2 different nurses when I asked if we could please move to the window side since our roommate was leaving, due to his diarrhea being gone, (what I wouldn’t give for that problem) they kept telling me no, that it couldn’t happen. Ummm…. excuse me. I was not having that and asked to please speak to the charge nurse. I very politely told her that if we could please move to the window side of the room, that would really mean so much to me. I told her that we are here so much and a window view really helps to keep me sane. She listened and gave in. I guess she took one look at Ro’s bald head and felt bad for us. Good thing. You’d be amazed at what a difference it makes to have a window view here. As soon as we moved over, the sun was setting and Ronan was so excited to see it. We are sooooo spoiled on the 2nd floor from being there all the time and knowing everyone so well. Everyone is more than happy to give me a window view room, even if it’s in the middle of the night and one becomes available. This 3rd floor stuff is for the birds. We have had a really sweet nurse though and she’s even a Sundevil. Gotta love that.

My little boy is back to his old self, as much as that is possible, and has been cracking me up with the things that are coming out of his mouth. Some appropriate and some not so appropriate things which makes his little words even funnier. Laughing has never felt better in my life. This past weekend was hard due to Ronan not feeling well. This hospital stay actually has not been that bad because Ronan has been pretty happy. His happiness equals my happiness. So simple and sweet.

Our goals are pretty simple to get us out of here. Ronan has to stay fever free and his ANC counts have to come up to around 200. I have a good feeling tomorrow that they will be higher than 0. He looks great and has a ton of energy. I would love to be out of here by Friday. The weekend at home would be so nice.

That’s all for tonight. Xanex kicking in, sleep may actually come tonight. G’nite dear, sweet friends. Hope you all had a beautiful day today.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’ve always thought this about people. It says a lot about who you are in the way to treat others; especially strangers. Everyone needs to just be nice.

Magic Medicine… Day 2 Round 6

I so needed to take a little break from the hospital today. Ronan is still refusing to get out of bed so we spent the morning playing; I tried my best to entertain him. Our favorite nurse, Sharon, came to do Ronan’s dressing change. He did pretty well with it but at one point I heard him yell out to her as she was taking the tape off, “I’m not a brave boy, I’m NOT A BRAVE BOY!” Neither of us had said anything about him being brave, but in his little 3-year-old memory, he hears us telling him all the time how brave he is and as he was hurting from the pain, he decided to let us know that he was not brave. We both told him he was, that he was the bravest boy in the world. UGH. I could cry right now just by telling this story. A 3-year-old should not what it is to be brave and to have people tell him he is brave all the time. Cancer is robbing Ronan of his childhood and I am fucking beyond pissed about it. His childhood, his innocence, his toddler years are being ruined. This will never be alright with me and I swear to god, I will do something about it. For all the Ronan’s, Jacks, Mia’s, Phoebe’s, Coleman’s, Victoria’s, Leo’s, Noah’s, Tripp’s, Ashley’s, Layla’s, and everyone else out there that is suffering and dying from this disease. I will not stop until people start paying attention to childhood cancer

Auntie Karen came around noon and I snuck out to go home. I wish I could say I was productive at home but I just tried to catch up on some sleep since I only slept a few hours last night. I tossed and turned during my nap today; even though I was exhausted I can’t escape being restless. I got up, showered and ran off to my hair appointment. It felt so nice to do something normal and to be out of the hospital. Sarah (the baby whisper) came and relieved Auntie Karen and sat with Ronan for about 5 hours. Thank you both today so much; I don’t know what I would do without you.

Ronan is tolerating Round 6 really well so far. I know the effects won’t hit him until late next week but for now, besides the fact that his spirits are down, he is doing well. He hasn’t had any nausea yet which is great. I can’t wait to bust him out of here hopefully on Saturday evening. We then get a few weeks off from the hospital before we start the Stem Cell Transplant. We will have more scans done in the next couple of weeks to give us an exact answer on where exactly Ronan still has cancer left in his little body. I will update you when I know exactly what the date is going to be. Ro is peacefully sleeping now; he looks so beautiful. I swear I could sit and stare at him all night which is really what I end up doing most of the nights that we are here. My eyes will never be able to soak up enough of his beauty.

I received some exciting news tonight via FB! My friend, Jessica, posted on my wall that she saw my comment in US Weekly re: Sloan Kettering and Jake Gyllenhaal’s visit. I called up New York Macy to see if she had the issue. She didn’t and sounded half asleep but still said she would drag her butt out of bed and into the freezing cold at 11:00 at night to buy the issue. I was laughing at the thought of that and told her no way, that I would call up Trish or Sarah. I ended up calling Sarah and she ran out to grab a copy so she could tell me what is said. Thank you, SARAH!! You are such an amazing friend:) Not only did US Weekly put Ronan’s website in the latest issue, but they gave me a whole little side blurb. I am practically jumping up and down on the hospital couch I am SO EXCITED! After hearing this news, I can’t stop smiling and it feels so good. It’s been a couple of days since my smile has come out to visit:) This so raises the bar for us in getting the word out about Ronan and changing the way the world views childhood cancer. A huge thank you to Jennifer at US Weekly for keeping her word and having something so sweet come out of this. Now, if I can just get Jake to become the voice for childhood cancer. We don’t really have a voice and as I said before, I feel like he could really be a good advocate for us. I’m going to try my hardest to make this happen; people have to start listening and paying attention to this issue. There are too many babies, kids, teenagers, suffering from cancer for it not to get more attention.

Woody and I were having a conversation the other day about unconditional love and what it means. We are at a point in our life where we have so many amazing people doing things for us. You know who you are, all of you who are helping us all while asking of nothing in return. Please know that not a day goes by that I don’t think of all of you. Trust me, it kills me to not be able to sit down and thank each and everyone of you individually. You are all amazing, even the people that we do not know and who are starting to call themselves “Ronan’s Fans.” I try my best to keep up on all the comments on here and I hope you all know how much it inspires me, that I am inspiring you. Ronan is so full of beauty that he has flooded our lives with it by touching so many of your hearts. I will forever be eternally thankful for each and every one of you.

Transplant is going to be hard and some of you have asked what you can do as far as sending things for Ro to play with; for us to please make a wish list of things that you can send to the hospital to keep our little guy entertained. Keeping him on lockdown for 20-60 days is going to tough. I’m trying to get creative and think of the best ways to keep him happy. Of course you know his love for Star Wars so I was thinking of putting up a bunch of Star Wars posters in his room and making it very Star Wars themed. I went on Amazon the other night and they have a couple of different Star Wars tents that I am thinking he would love. As far as toys go…. I know everything has to be new or very sanitized to go into his room. It has to be insanely sterile. iTunes gift cards are always great. Ronan has totally taken over my iPad and loves to download movies, books, games, etc… My iPad has been my saving grace over these past few months; it keeps him entertained for hours. He has watched Season 3 of Mickey Mouse Clubhouse for about 3 days straight now and loves that he can choose the episode himself. I love to watch him do this; I can tell it gives him a feeling of independence and pride.

I can’t believe this is the last round of Ronan’s Magic Medicine. Look how far our little guy has come! After all he has endured and all the pain he has suffered, his beauty never fades. I can’t wait until this round is done and I can do my “Ronan’s done with chemo happy dance!” The light at the end of the tunnel is getting closer!!!

G’nite, sweet dreams, to all of you angels out there.

xoxo