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

Rain in May

Ronan. I have no idea how I survived today. Actually, I do. It is because you are amazing in everything you do. You were amazing during your time here with us and you are amazing even though you are gone. Gone. It’s a word that I’ll never get used to. I know that was you today; you who made it rain in Arizona in the middle of May. You knew I was going to have a hard day and you know how much I love the rain. It’s one of my favorite things in life; especially now since I don’t get to see it very often. You knew it would make me smile and think of you. You made it pour and you made take the time to be still in breathe in the clean air and just be for a few moments. I know it is making you uneasy how restless I am. I know you are watching me stumble about and I can just hear you saying, “Moooooommmm! Don’t be sad!” I hear you tell me that a hundred times a day. I felt your little kiss on my cheek today as the rain splattered down on my face while I was watching your brothers play on the playground at school. I keep telling myself you sent this rain to me today to make me happy; not because it was your tears pouring down to let me know how sad you are to be away from me. I know, baby. You don’t have to tell me. If anyone understands, it’s me. I miss you too.

I went off to see my therapist today and I was walking up to her office, I thought to myself…”I’ll bet I’m not even here on the right day.” Turns out, I was; but at the wrong time. Shocker. It’s a wonder I can even dress my self appropriately. Sarah worked her magic and just happened to have some time to see me so I was able to get in. I saw “The Good Doctor,” first. I think we said a lot of fuck words together. He kept telling me how fucked up all this was, I kept saying it was fucking bullshit and kept asking him what the fuck I was supposed to do now. He told me he thought it would be a good idea to go and get my arms tattooed with sleeves because that totally makes sense. He was only kidding and it made me laugh. We talked about if I thought anybody failed me during all of this. I told him, no. Everybody in our life went above and beyond for us. The only things that failed us were medicine, doctors, science, and lack of funding. All of those 4 things right there killed my child. Wow. If I could have all of those things in a room with me it would not be pretty picture. I’m pretty sure I would feel no mercy for any of those things and a lot of words would be screamed and maybe a few balls would be cut off. Thanks for killing my child because you don’t have your shit together and have a cure for this disease. My son just died because if this. UnFuckingacceptable. Don’t worry about me…. my son is just another statistic now. So happy he could be of fucking service to you. Thanks for your time. I won’t ever forgive the “doctors,” until a cure is found. And it better happen before I die because if it doesn’t, I could become very old and very crazy. Old and crazy can be a very dangerous combination. You don’t fuck with an old and crazy person. It felt good to talk today. As much as I blab on here, I’m not the best at actually talking to people in real life. It takes a lot for me to feel comfortable enough with someone to talk to them openly about everything that is going on in my head. It’s a good thing that I feel so comfortable with Sarah. She makes it easy for me to open up and say the things that I’m most afraid of. I like the fact that she is not pushy with me in the way that I am feeling or how I am dealing with things. She is very good at guiding me but not pushing. Huge score in my book. I don’t deal well with pushy people. Unless their names just happens to be Fernanda, Stacy, or Auntie Karen. Those 3 can push me at anytime and I usually listen. They know how to work me like a little puppet. Well, almost;)

After I saw Sarah, I ran to meet your daddy for lunch. We grabbed a quick bite and I ate some turkey for you. I tried. I then put on my best mommy boots and went to Liam and Quinn’s school to help out in their classroom. I was nervous about it the entire day; but I knew how important it was for your brothers. It was hard for me to be there…. but I tried my best to stay calm when all I wanted to do was freak out and run away. Being around a lot of people is hard for me and it just feels wrong. I set my anxiety aside and put on my best smile for your brothers. I love them so much and I refuse to let them down by not being there for them if I am able to. We also had their team baseball pizza party tonight. It was very sweet and I am so thankful for the team they were on this year. It has been so therapeutic for them and they loved every second of it. They are sweet, happy boys whom now have to learn to start over with our family. Do you have any idea how difficult it is to go on without the little baby boy who ruled this house for the almost 4 years of his life? We all ate, breathed, drank, everything Ronan. I am not kidding when I say that baby was our entire world. He kept us on our toes, he kept us laughing, he kept us so blissfully happy. It was the 5 of us and we were unstoppable and loved every second about what we had. Now that he is gone, we have to relearn how to be a family again without him. It is the saddest thing in the world. Woody asked me tonight If I think we will ever be happy again. I straight told him No. Or if we do come close to being happy again; it will never ben in the way that we were with Ronan. Ronan was our sunshine. And we all knew it even before he could walk and talk. He was the missing link that fulfilled our family to a tee. Everyday with him was something magical and special. Everyday with him was a gift and even the twins knew this. So now what do we do?? We go away together for a while and try to reconnect as a family; minus our little guy. We don’t have a choice as it is up to Woody and I to stay strong and fix as many broken pieces as we can. We owe it to each other and we owe it to Liam and Quinn. I’m not going to let Ronan down as I know he is watching us.

That is all for tonight my loves. I love you, Ronan to the moon and back. I love you all gorgeous followers. If you give me some time, I will start taking orders for bracelets. I just ordered 1,000 of them but they will take a while to get here. As soon as they arrive I will let you know and take down your info. You can pay for them by making a donation to The Ronan Thompson Foundation. Let’s get the word out to as many people as possible! Ronan’s work is only just beginning! I forget to add tonight that while I was walking out of Fry’s on Tatum and Shea today I saw a big bucket on a display table. It had little flyers about donating to childhood cancer. I got so excited! I then looked in the clear bucket and this was late in the afternoon and it had about 3 dollars in it. I mean really, 3 dollars?? I almost went inside to talk to someone about how maybe they could promote this a little more…. like by putting Ronan’s face on the jar… but I was in a hurry to get to the boys’ school. I threw a 20 in it and I think I’ll go back tomorrow to talk to somebody. Baby steps, baby steps. It’s better than nothing as it’s a start.

I am leaving you tonight with something that many of you are not going to be a fan of so you’d better stop reading here.

But this is what I thought while driving to my therapist today. I had a huge rush of anger wash over me and I said in my head,

“FUCK GOD.” Yup. I said it and I have the balls to say I said it because it was how I was feeling at the time. Angry at this so called “God,” person that just decided to take away my child and not fix it even after all of the prayers and I know there were hundreds of thousands. So why weren’t they answered? Was it really asking too much for you to just help my baby be o.k. and give him back to me? Or maybe you are just a selfish person who wanted him all to yourself because you had never seen such a beautiful boy exist on this planet. Either way, you are a Dick. If you are really all so mighty and powerful like people think this should have been an easy problem for you to fix. I’ve decided that I’m going to have a “FUCK GOD,” shirt made and wear it whenever I hike Camelback Mountain. I have every right to be that pissed. And anyone who gives me crap about saying this…. you’re not entitled. You didn’t just lose the love of your life-like I did. Like Woody did. And like Liam and Quinn did. We have a right to be pissed off and it comes in many different forms. Today, I was pissed off at God and I am second guessing everything he supposedly “does.” He has a lot of making up to do but nothing will even come close because Ronan is not coming back and that is the only thing our family wants.

Sweetest Dreams. Thanks for not judging only embracing. Love you all

xoxo

The most wonderful time of the year

Christmas in New York truly is magical, even under our circumstances. Today, we spent the morning hanging out at the Ronald McDonald House, just enjoying the activities that they had going on. Around one, I skipped out, hailed a cab, and went over to pick up Liz so we could do a little holiday shopping. I had yet to get Wood a thing and talk about waiting until the last minute. Today really was the only free day I’ve had alone to do his shopping. Liz and I walked the streets of New York for 5 hours straight. It was busy, chaotic, and so much fun. We had the best time together and I feel so lucky to have her in my life. She is such an amazing young lady and truly is like a sister to me. The streets and shops were full of people everywhere and I could practically feel the city buzzing with the excitement of the holidays. I loved every second of being right in the middle of it. Today, I enjoyed a day of escaping our reality for a few hours…. even though Liz and I talked about Ronan a lot, we spent most of our day just enjoying our surroundings. It was a wonderful Christmas Eve day. Tonight, everyone came over to the Ronald McDonald House and we hung out. Ronan had a couple of meltdowns… he’s tired tonight; but happy. Liam and Quinn have been great and we have really been enjoying them. They love staying here with us. RMH does such an amazing job of having fun activities for the kids to do and everyday there is something going on. We feel so blessed to be staying here for such a long amount of time. It is a very safe, fun, positive, environment. I just know Quinn and Liam are going to look back at this Christmas and remember it as being a fun time, full of lots of laughter and love.

I wonder what you are all up to. I wonder if Christmas means more to you this year? It does to me. All I want for Christmas is for my family to be healed, my friendships to be stronger, and to have Ronan healthy. It was so hard for me to see his tumor on the scan yesterday. It made everything so real and seeing the very first scan, when the tumor was everywhere, took my breath away. It was so huge before. I just don’t know how that thing was growing in my baby and we had no idea. His stomach did not protrude at all…. he acted and felt fine. The doctors could not even feel it when they pressed on his stomach, yet it was everywhere. Such a scary thing. It it wouldn’t have been for his little left eye, we would have never known what was going on. I am thankful every single day that it metastasized up into the orbit of his eye… otherwise whose knows when or if we would have caught this.

Tonight, Karen, Olivia, and Liz went to church here at 11 p.m. I wanted to go with them, but felt like I needed to be with my boys. Karen said she was going to pray extra hard for Ronan, for me. What a beautiful gift they have given me this Christmas. I couldn’t ask for more. The thought of all 3 of those beautiful souls, sitting in a church in NYC, praying for us brings tears to my eyes. It’s one of the best gifts I’ve ever been given. I know he is going to be healed, I know he is going to grow up and be the most amazing man, there are too many people thinking and praying for it to go any other way. Too much love surrounds this little boy of ours.

This Christmas, I would like to say thank you to all of you and leave you with a little toast. To all of my family, friends, strangers, near and far…… thank you for thinking of Ronan and following his journey and believing in him. A toast to all of you. Cheers!

To Nearest

To Dearest

To The Truest

To The One’s Who’ve Been There

To The One’s Who Who’ll Be There

To Dropping Everything

To Honesty

To NO Judgements

To No Doubts

To Loyalty

To Trust

To Humbleness

To Knowing What Matters Most

To Having Our Back

To Asking For Nothing In Return

To Accepting

To Loving

To Kindness

To Living Your LIfe Full of Being Selfless

To All Of You, Who Know This Is True, And Know It Is Your Soul We See Shining Through.

Happiest Holidays!!!!!!

Magic Medicine… Day 3, Round 3

Today I am happy and my spirit is renewed. I feel really good about things. Just looking at Ronan’s determination and strength gives me such a sense of relief. I always knew he was different and special; he’s always had that twinkle in his eye like he knew he was up for a fight. The strength and support of everyone around us is also so comforting to me. Ronan has such an army of people who are pulling and praying for him. The end result of this will be something good, something big, and something amazing. I can’t feel it in every fiber of my body. He did really well with the chemo last night. No vomiting or anything but he did wet the bed. They are pumping him full of fluids 24 hours a day. He wakes up about every half an hour to pee and refuses to wear a diaper. He usually does very well with this but had a little accident last night. No big deal, we called the nurse and changed his sheets, clothes, and wiped him down. He went right back to sleep after that.

Auntie Karen came by today so I could run home and do my usual routine. I can’t tell you how much that helps me get though these hospital stays. I had a visit from an amazing mommy and new friend, Pamela White. Her little girl, Victoria, is a cancer survivor. Their story is so hopeful and inspiring. Pamela is funny, strong, and someone who has walked in my shoes and has come out the other side with the most beautiful life possible. I know we will now be friends for life. She was very encouraging and we had a couple of laughs about some things like, how wonderful Christmas in New York would be;) Being sarcastic of course. I can tell she and her husband are a lot like Woody and I. Strong, grounded, smart, and would fight as long and has hard as possible to save the life of their child. They are a prime example of bad things happening to good people. But they got through it and are living proof that life can turn out more beautifully than you could have ever expected.

Tomorrow Woody and E.J. fly to New York. Please keep them in your thoughts and prayers for safe travels. I am so excited for the two of them to go out there and meet Dr. Kushner and Dr. La Qualia. I know they will be in very good hands and come back with the answers we need to know that we are on the right path. Between Woody and E.J., no questions will be left unanswered. They will also be checking out the Ronald McDonald House while they are there. That is where we will more than likely be staying after Ronan’s surgery. It is close to the hospital and from what I hear it is a very good support system and very inexpensive which is always a plus.

Wow. How drastically things can change. My beautiful day has turned into a very hard night. I stupidly made the mistake of taking Ronan outside tonight, down to the playground. Duh, Maya. A playground? Poor guy is all hooked up to his machine and all he wanted to do was go down the freaking slide. Well guess what? He couldn’t go down the slide so I had to sit and watch my baby cry, hit, and scream for 20 minutes before I was even able to talk him into going back up to his room. Traumatic to say the least. Once we got up back to his room, he was still mad and obsessing over the playground. It has gone on almost the entire night, up until a few minutes ago when he finally passed out. My friend Stacy came to bring me dinner. She sweetly brought Ro a new Star Wars book that he does not have and that took his mind off of it for a bit, but not for long. Dr. Maze stopped by and Ronan was very grumpy to say the least. Dr. Maze tried to work his magic and asked one of the nurses if he could be unhooked for awhile tomorrow, to at least play on the playground and get some fresh air. She said she didn’t think so but he said he was going to talk to Dr. Wood for us. If that could happen, it would be oh so lovely. Just to see my little guy play and be a 3-year-old would be a dream come true. This week has been hard on him, even though he is acting like such a little trooper. Gay and Cal stopped by after Dr. Maze and Stacy left. Just seeing Cal made Ronan so happy. It reminds him of being with his brothers who he misses so very much. Cal and Ronan played and giggled the whole hour they were here. After he left the meltdown begin and lasted for about 2 hours. He was screaming, kicking, talking about the playground and wanting to go home and see his brothers. I stayed calm, tried to explain everything to him, and tried to distract him. He finally fell asleep after I rubbed his back and sang to him. Needless to say, my anxiety is through the roof right now. I need to go run about 6 miles and scream my lungs out. I know I won’t be able to sleep tonight<3<3<3 Gotta find something productive to do. Starting to write 5 billion thank you notes is sounding really good right about now.

Sweet dreams<3<3 What I would give for that.