Run Like A Rockstar!

 

 

 

The Ronan Thompson Foundation is one of the official charities for the P.F. Changs Marathon in Phoenix, Arizona. Do you want to run for a great cause? All the information you need to sign up is below, just click on the link. I know you have it in you! If kids can fight cancer, anyone can run a half or full marathon! So get after it, peeps!

xoxo

http://www.theronanthompsonfoundation.com/node/257

A pretty perfect playday with our new friends and a hummingbird.

Ronan. Monday. Presidents Day. Or in other words….. your brothers get to stay home from school day so you’d better act like a normal mama, and make a fun plan for them like you would have back in the day. A fun plan was made for me a few days ago.

Incoming text message from Margarita: Do you want to take the boys roller skating on Monday? On the west side?

Me: Total awesomeness. Roller skating? On the west side? That is so dangerous. Yes, please.

A plan was in place. One less thing I had to think about.

The morning came and I woke up feeling extremely hung over for some reason. It was not due to the imaginary shots/wine/beer I drank. I think I was hung over from the amount of restless sleep that had consumed me once again, during the night. I hopped in the shower, got your brothers up, showered and we were out the door and shoved into this bright, bright world. I took them to Taylor’s for breakfast. “Table for 3?” the waitress cooed. My brain automatically went to, no… table for 4. Where’s Ro? I looked behind me. “Oh, yeah. Table for 3, please.” Fuck. That will never sound right. I sat with your brothers and watched as they inhaled their food. Pancakes, eggs, fruit, 4 sides of bacon, toast. Geez. I cannot keep those brothers of yours, full enough. They eat twice as much as I do. You would have given them a run for the money though. Oh, how you LOVED to eat. You were always my best little eater. We finished our breakfast and drove over to Rita’s house so we could follow her to the roller skating rink. Or as I was soon to discover, my heaven.

Your brothers were excited as they had never been roller skating before. We entered the facility which was packed full of every different kind of person you could imagine. Tiny kids, young kids, tweens, teenagers, adults, grandparents…. you name it. The roller skating rink was dark and disco colored balls lit up the ceilings. I was instantly transferred back to 1989, where problems did not exist. Ummmm…. excuse me. How did I not know that this place existed? A dark place you could go, in the middle of the day, where the best/worst top 40’s music is so loud that you could hardly think straight…. all while on roller-skates! It does not get any better, than that. Your brothers were less than thrilled. I don’t think they will be trading their basketball shoes in, anytime soon for a pair of roller-skates. I got the two of them out on the rink a couple of times, but they were so uncoördinated all they did was skate, fall, skate, fall…. over and over again. They were not the least bit impressed with my mad roller skating, look at me, I can twirl around skills. I held their hands as we tried to skate together. I did not hold back my laughter as they continued to fall. They both reminded me of that scene in the movie, “Bambi,” where he is a baby and he is just learning how to walk. Legs flying everywhere so long that little Bambi just cannot get them to cooperate. They were both good sports and by the end of our hour there, I had Liam skating around the rink hardly falling at all. Quinn was over it pretty fast and could not wait to get out of there. I could have stayed there all day. In fact, the next time I go missing in the middle of the day…. you’ll know where to find me. Great Skate hanging out with my new mid 40’s man friend with the most epic mullet and Van Halen shirt I have ever seen. Next time I go I am totally rocking my Van F-ing Halen tee so we will match. Great Skate rules.

We continued on with our little playdate and Rita and Dragon, came over. It was a spur of the moment, let’s salvage the day and play plan. It was our first play date with them and the boys were excited to have their new little friend over. Their little friend was just wanting to play with some trucks. “I’ve got some trucks,” I said to Rita. “Come over.” So they did. Little Dragon had trucks on the brain so I led him into your room. Rita gave me a look and said, “Are you sure???” I told her I was without a doubt sure. I practically begged her to let her little Dragon, into your room to play with the baskets of toys that are just sitting there. We grabbed about 6 trucks and headed out into your backyard. Rita looked at me again, “You’re really sure.” I gave her my best I’m strong but really sad smile and said I was absolutely sure. That it would make me sad, if your toys were not played with. And play that little Dragon did. Alone for a while, while Liam built pirate ship legos in your room and Quinn tossed the football around with me. I heard Rita yell, “Where in the world did you learn to throw a football like that?!” I yelled back at her, that I wasn’t sure, but apparently it meant I was meant to have all boys. Quinn and I were tossing the ball around for about 15 minutes when it happened. I was feeling good about being a good mom, and playing with Quinn. I never feel that way anymore, mainly due to the fact that I feel like I am freaking crying/hiding all the time. I was standing in our yard and I kid you not, a purple headed humming-bird flew right up to my face and stayed there for a good 30 seconds. I thought it was going to kiss my face. What in the world? Am I dreaming this? I froze. Hummingbirds don’t come this close to people and just stay there, do they? It’s head is purple…. I thought to myself. I must be dreaming. Or dead. Then I heard Quinn, “MOM! The hummingbird! It’s head is purple!” Just as he said those words, it flew off. Whoa. That was weird. I’m not dreaming. Quinn saw it too. I didn’t know what to think or do, so I continued to throw the football back and forth with Quinn. I couldn’t stop thinking about the hummingbird. Was that a sign? A Ro sign? I don’t know but you always hear about how after you lose someone you love, signs appear. Was that it? Or was it just a freaking hummingbird? I told myself not to over think it. Just to go with it. It was a little Ro sign indeed. It’s been a while since I’ve had one of those and it felt nice. Thanks baby.

We played outside for the next couple of hours. I watched Quinn play with little Dragon, just like the way he used to play with you. It hurt/felt good all at the same time. I felt my heart fall in love with this little Dragon that I hardly know, instantly. I watched the way he played in the dirt, destroyed part of Liam’s army Alamo that’s set up by our rocks, played trucks, laughed with Quinn, they took the hose and washed your truck together. Everything that they did were all the things Quinn used to do with you. It was almost too much, but it wasn’t. It’s just the way it’s going to have to be from now on. All that mattered was that two little boys’, had the best play date ever and they were both happy. That in turn, made me feel alright. That little humming-bird appeared again and did the exact same thing to me, just as our day was coming to an end. I think it was your way of telling me good job for being such a good mom for the day. I think it was also your way of telling me that our new friends are extra, extra special. I kind of already knew that though. After our friends left, I fell apart in the garage and let myself cry for everything that used to be, but will never be again. I mainly just fell apart because I miss you so much and I have no control over how much it hurts sometimes. Uncontrollable tears are part of this process. I’m sure they will be, for the rest of my life. I’m o.k. with that. I’m o.k. with the tears. You are worth each one of them.

Today was pretty awesome. Not really, because all I did was get caught up on everyday things that I now hate. And I went to the freaking grocery store, which you know I hate. It’s one of the places, that I miss you most. “Come on Maya! Be a good mom! Get your kids some healthy food and try to cook at least 2 meals this week! You can do it!” That was myself, giving myself a pep talk today as I almost aborted grocery store shopping mission. I pushed my little cart, though out the store and missed you so badly, that I found myself magically transported to the toy aisle where I could not move. Frozen in front of the Star Wars toys on aisle 9. I wonder if Ronan would like this guy…. Oh! A guy he didn’t have! Should I buy it? The conversations in my head go on and on all day long like this. The anger came next. -Maya get out of the fucking toy aisle. Ronan is dead, you do not need to buy him any Star Wars toys today. I went and took my anger out on the Kosher food aisle instead. I’ve never made Potato Latkes before. I’m going to make some fucking Potato Latkes today. I’m going to peel, a fuckton of potatoes and make the best Potato Latkes that have ever existed. I drove home after the grocery store and took the rest of my anger out on cleaning out our refrigerator and getting all the laundry done. I find myself, washing the blankets and sheets in your room, just to do so. Sometimes I secretly think if I wash them enough times, you will come back. Or sometimes I don’t want you to feel left out, so I wash your clothes too. Your little socks are still in my purse. I take them everywhere.

I went on a run tonight to clear my head. I wore my new favorite running shirt which simply says, “Fuck Cancer.” It makes me run faster. I guess I’m still sick because 5 minutes into my run, I started coughing and my chest was burning so badly that it felt like it was on fire. I told myself to suck it up even though all I wanted to do was turn back home and crawl into bed. I didn’t though. I ran so hard/fast for 5 miles that I ended up throwing up on the side of the road. I heard the little voice in my head telling me not to stop, because how was I going to Fuck Cancer if I gave in so easily to the pain of my run, due to being sick. Being sick is for the weak. You were never weak which means I have no right to be either, baby. I sucked it up today for you. I finished my run, came home and took Liam on a date. We went to dinner, where another little thing happened. There was this girl there, playing acoustic guitar and singing. She’s really good, I said to that Liam brother of yours. He agreed. I heard her say, “The next few songs are going to be covers of Taylor Swift.” No freaking way, I thought. Who is this little child prodigy who just made my Ronight? Liam and I listened to her. I held his hand. We both smiled. It was if you were there with us, on our little date. I need this girl, to play at one of our events. She’s awesome. After we paid the bill, I gave Liam some money, a bunch of RoCards, and about 6 bracelets. I told them to put them all in her tip jar. He was so excited to do so. I hope she looks at your little face, looks up this website and something Romazing comes out of this. I think she was worthy of you tonight. Her voice, guitar playing and choice of songs told me this. Liam agreed. After our dinner date, I took your smarty pants brother to the bookstore. My other heaven in life. The book store. I could spend hours in them and so could he. His love for reading has taken off like wildfire! I am so excited about this as I was always such a bookworm. Reading used to be one of my favorite things to do in life. I miss it. Maybe it’s time I start taking it up again. I kind of feel like I could be ready. We shall see. It’s the lack of concentration that seems to be killing me. That and my non-existent memory… the one that I can’t find. Has anybody seen it? I would really like it back…. it’s starting to become a problem. You know it’s a problem when your daddy comes home from work, looks at me and says, “What did you do today?” My reply is always, ” I can’t remember.” And I literally never can. Then I get frustrated, start to cry, and wonder if my brain will ever be the same again. At this point, I’m thinking no.

Much more to write about little monkey man but your brother, Quinny, is looking extra snuggly. I’m going to curl up with him for the night. I’m sorry I can’t curl up to you. It breaks my heart every night. I love you so much. I miss you so much. I hope you are safe. Please, please be safe. Sweet dreams little man. ILOVEYOUILOVEYOUILOVEYOUILOVEYOUILOVEYOUSOOOOOOMUCH.

xoxo

Because golfing in a TuTu is sometimes necessary

Ronan. Hi baby. I missed you today so much that at times I felt that I couldn’t breathe. I woke up early for not having slept well the night before, but I was ready to start the day anyway. I was tired, but my mind refused to be still. I got up, showered, dressed, and ran out the door. I got a few errands done, ran into the grocery store and came home to make breakfast for your brothers and cousins. We all sat around the table and ate, laughed and talked. It was hard for me to sit there without you, but I did it because it was important to your brothers. It didn’t feel good. Does that make me a bad mama? I don’t know. It would seem like simple things like this would make me happy. They should, right?? Maybe someday, but not now. Your brothers ate huge breakfast which was important as they had their first basketball game at The Village to play. I fed them, they got ready and we all headed out the door. I had to walk through those doors without you today and it was gut wrenching. You used to love to go watch your brothers basketball games. You were their little mascot. I tried to stay focused on watching your brothers, but I was so distracted by you not being there. And there were sooooo many kids everywhere. I could not stop the screaming from inside my head as to why you were not with us. Why did you have to die from Cancer? All of these healthy kids, were running about. I just kept thinking, they have NO idea how lucky they are. I kept wondering if their parents did? If their parents knew how lucky they were to have healthy, happy, carefree, kids. Or is it something that was more of a right, not a privilege to them? I don’t know, but I really I do know. I know how lucky parents are who have healthy kids. How a day should never pass without being grateful for this gift. I know this because of the sickness you fought, for the life we lived in the hospital, and for your death. Your death that is now teaching thousands of people how precious life really is. It seems so unfair that you had to be the one to teach us all this lesson. Why couldn’t it have been me? I would have gladly died in your place. I wish this everyday.

Ro baby. I think I started this a few days ago. Everything is blurry again. The days continue to drag on and on. We’ve kept busy. Your brothers amaze me everyday. You always hear how kids are so resilient, but now I am witnessing it first hand. Both of your brothers are thriving in school. Doing so well and they are such good boys. They are coming home with good grades, both are getting praises from their teachers, and they seem happy. I am glad they won’t know the pain of losing you in the way that I do. I would never want them to feel even a quarter of the way that I do. I am trying really hard to balance their therapy, while making sure they feel somewhat normal. This means play dates, sleep overs, the same chores, responsibilities, and getting them back into a routine of structure and love. I know they hurt, I know they miss you, I know they are sad and confused…. but it is not consuming them. They were really well-adjusted boys before all of this, and I know that is a big part of why they actually seem like they are going to be o.k. It is all I can hope for at this point. I don’t want their lives to be ruined over losing you. I want them to learn from this and understand how precious life really is. They get it. They got it before all of this which seems so unfair. FUCK. I hate trying to justify any of this, because they were already going to turn out to be amazing men anyway. So what. Now they get to become better boys because you died? It’s not right, Ro. I sometimes have to try to rationalize this in any way I can, just to keep me moving forward. The truth is, they should not have to be learning this lesson. There is no rationalizing this because it is just fucked up. Plain and simple.

This weekend was busy. I don’t know what we filled it with, but it was filled. Basketball game, Football on T.V., Inferno Hiking, things around the house. I went golfing on Saturday night. Glow in the dark golfing on a lit up course. If there is one thing I’ve always known about life, it’s that people take it way too seriously. And when you become a “grown up,” it is easy to get lost in the shuffle of responsibilities. I’ve always had a pretty good idea about how to balance both things… silliness and seriousness. I’m a big kid at heart, which is probably why I relate so well to babies/toddlers/children/ and teen-agers. I like fun. I used to be so fun. I used to love to live, which is why Saturday night was so necessary. I saw something in Phoenix Magazine about a glow in the dark golf tournament that was being held. Um… yes please! I called to register, but all the slots were full. I got a call Saturday morning, telling me that two spots had opened up and the man asked if I wanted them. I said, of course. I called up Liz to see if she wanted to go with me as I have been missing her since our summer in Coronado ended. We both have been so busy, so it seemed like the perfect excuse to spend some time with her. Liz does not golf, but she was game anyway. She told me her friend, Heather, wanted to come as well. I met Heather over the summer and she is a doll. I told her to bring her. I told Liz to be prepared as I had somehow gotten it into my head that it was necessary to go glow in the dark golfing, in a TuTu. Why the heck not? My lovely, Katie, just happens to carry TuTu’s at her store. She took a pink and a purple one, off her mannequins for me. I came home, threw on the purple one, for you of course, a black shirt and black flats. Liz about died when I opened the door and I think she may have called me a dork. I told her that she was wearing one too, so she needed to be quiet. Golfing in a TuTu. I cannot believe somebody hasn’t thought of this before. It should be mandatory. It was so much fun and made our golfing night, even better. I did this for you. And for me. Because my life is so sad now, but being in a TuTu for a few hours while whacking a golf ball on a dark glow in the dark course, made me smile and think of you and how much you would have loved being with me. I totally want to put together a golf tournament for you with this idea. All the ladies in TuTu’s just for you. I’ll make the men all wear fake mustaches or something silly like that. The lesson being, life can be hard and for some, harder than others……. but you should always remember how to have fun, even if it is in the form of acting like an 8-year-old child. Adults often forget how to do this as the age thing seems to cripple them. Age is just a number, nothing more. I promise to always try to channel my inner child for you by doing silly things like golfing in a TuTu. It makes me a better mama. And the fact that you had your childhood stolen from you makes me want to channel my inner child that much more. To make up for the life that you never fully got to live. I’m sorry, Ro.

I spent today, keeping busy. I actually got my booty up out of bed at 5 a.m. and went to boot camp. I had lunch with Tammy yesterday and told her if I got some decent sleep, that I would come to her class this morning. I got a good 5 hours in, which I seem to do just fine on. I went to her class and I am so glad I did. I miss it so much. I’m paying the price already though as I am so sore, I can hardly walk.

I’m having a really hard time being home during the day, alone. It is so quiet without you. Too quiet. I have been going to public places when I have emails to get through, bills to open, checks to write, etc….. Today, I went to my Safeway and sat in the Starbucks with my headphones blaring music, while I pounded out email after email. I had two really sweet women come up who recognized me to say Hello and how sorry they were. I cried talking to them both. I couldn’t help it as I was an emotional mess pretty much the entire day. I was glad they said hello as it is always nice to know how many people are thinking about you. I finished up my things and headed off to get a few more things done. Lots of “shit list,” things checked off today. Yay me.

I spent a lot of the day, doing things for others today. Things that should feel really good to me, but they don’t. As I was walking out of Staples, and to my car, I felt like the world was going to swallow me whole. I started bawling. Choking on my tears and feeling like I was surly going to suffocate to death. I was engulfed in a world of loneliness, sadness, pain, and just plain missing my little partner in crime. I somehow made it to my car, but it took me a while to calm down. I drove home but cried the whole way there. Once I got home, I tried to be productive. I am always trying to avoid the silence. I talked to Fernanda and she let me vent/sob to her. I told her over and over that I could not believe you are gone. I asked her why you because I will never understand. I told her how I had spent my day, doing all of these great things, like helping others which is what I know I am meant to do…. but it is never going to fill the huge hole in my heart. She said something like the pain will never go away, but I will learn to live with it. I told her what a shitty way to live. Because it is. To live in constant agony and pain; and knowing that I will never feel better, but this is my new normal. FUCK YOU WORLD. I hate this life. I hate this life without you and I just want you back. But you are not coming back so I am just supposed to continue on, fighting for any ounce of happiness that comes my way once in a blue moon? I want to help others, and I hope someday I can feel something from it. But as of now, it just feels like a fire that lives inside of me. It burns all day long and I feel like it is coming from you. You are the one pushing me forward, to make a difference. You are the one, pushing me to do as many things as I can to help where I am needed, to continue on to fight for all of the kids who are affected by cancer. There are so many out there, Ro. So many sweet babies who are going through this. I had no idea….. I feel like such a fool. My happiness was so simple before and I really did know how lucky we were. I thanked God for my life everyday. I was not ungrateful, mean, or a bad person. I was a good person before all of this but now I have to become better??? I know I do. I know I do for you. As much as I hate all of this pain, I know I still have you to answer to, Ro. You want things in this world to change. I have to be the one to help change them for you, because I want you to be proud of me. I promise to make you proud of me.

I’ve got to go now little one. It’s been a hard day. An awful day of feeling like I am buried alive and drowning all at the same time. I miss you. I love you to the moon and back and hope you are safe. G’nite my little “not spicy,” monkey boy. Sweet dreams, Ro.

xoxo

P.S. This makes me sick to my stomach. Did you know that pediatric cancer is the #1 disease killer in the US? Pediatric cancer kills more kids then AIDS, Asthma, Multiple Sclerosis and Muscular Dystrophy COMBINED and the really sad part of this is that no one knows this. Doctor’s do not educate parents about this. And to top it off, pediatric cancer research gets the least financial funding. Please help spread this info and save our babies!!!

I am starting a new trend. I think every girl should golf in a mother fucking TuTu. It rules. Go see Katie@Garage. She has the BEST ones.

On to the next step…. Transplant here we come!

Wasn’t a lifetime ago that I was sitting in the cafeteria with Auntie Karen, E.J. Tricia, Max and Woody as we went over all the options for Ronan? Wasn’t it a lifetime ago that I had to leave the table because I was hyperventilating and Tricia followed me and I told her there was no way I could do this?? How could it be possible that so much could change in the blink of an eye, and here we sit 5 months later with everything on paper, telling us the results from Ronan’s scans.

Bone Scan- No definite focal abnormality

Bone Marrow– No definite focal abnormality

PET-CTMIBG– Still has a small amount of activity in his knees, pelvic bones, shoulders, and spine but it has greatly diminished.

MRI– No abnormality in the brain.

24 hour urine test- negative for Neuroblastoma

This is good news. This is a huge victory for Ronan. But I still cried. I cried because I am his mother and I just wanted everything to be gone already. The doctors did not expect Ronan’s results to be any better than this, due to how tough this cancer is. That is why we will do the Stem Cell Transplant, Radiation, and Antibodies. Yesterday was a hard day though. I called Fernanda first… because it was her words I needed to hear. She let me cry and then told me all of the reasons why this is happening, how fucked up it is, but how this is Ronan’s journey, and I cannot compare it to anybody else’s because he is so different. She told me how lucky we are that he is responding so well, as unfortunately, some children do not respond at all. He is on his own path and is going to do this his own way. She is so right. I felt better after talking to her and made a couple other phone calls. I was running late to my hair appointment and was a mess by the time I got there. My sweet hair girl, Katrina (the one who shaved Ro’s hair for me) knew something was wrong as soon as she saw me even though I told her I was fine. 10 minutes later I was bawling in her chair as she wrapped her arms around me and held me. I told her about the scan results and what we had coming up. She is the best and is so good at letting me vent. Thanks, K<3 Love you.

Don’t even get me started on the fucking Audiology test yesterday. We had to finish it up and when we were done, the asshole Doctor looked at me and started saying things like, “Definite hearing loss, it’s permanent and will never come back. You may want to consider what kind of quality of life you want for him.” I wanted to reach across the table and strangle the mother fucker. The way he delivered his “news” was harsh, cruel, and just plain rude. I felt like I was sitting back in Dr. Robinson’s office for the first time having Ronan’s eye looked at when I ended up walking out of the appointment. I tried to argue with him, but his results are his results, he said.  WTF ever. I will not be going back to see him again. We know Ronan is going to have high pitched hearing loss, and big deal, we can deal with that. This guy made it sound like Ronan’s life was now going to be completely ruined. This is not the way you present your findings to a mother who’s child has cancer. We’ve got enough on our plate as it is and this is the last thing I’m concerned about right now. I’m made my complaint and will continue to do so against this asshole. If you are going to be so cold and ruthless, you should not be working with children.

Ronan has been in a happy mood since we got home yesterday. This will be his last weekend here for awhile so we are going to soak it up. He has no idea yet what is coming up next. How do you explain to a 3 year old that they will be going into isolation for god knows how long?? You don’t. I will tell him on Wednesday night, as little as possible and try to explain it in the most kid friendly way I can. I have a lot to get done before Thursday and thankfully my therapist squeezed me in on Tuesday. I’ve got to get myself ready as well as Ronan. We will meet with Dr. Adams on Tuesday to go over everything. I am excited. Excited that we are moving forward and that Ronan is doing so well. I am excited to get this Stem Cell Transplant done and give my baby a whole new immune system free of this evil cancer. He is going to have another birthday to celebrate once he gets his immune system. He will be the boy  with the most birthdays ever;)

This weekend we have the twins’ basketball game, my mom and I are having lunch with my dear friend, Lisa, Woody and I are going to Tricia and Max’s tonight, and tomorrow night all of my sweet girlfriends are kidnapping me for a dinner out send off. So excited to see them all!!!! It is going to be a great weekend and I am going to enjoy every second of it.

I hope you all have a wonderful weekend!! Thanks for checking in and spreading the word about our little Rockstar!

xoxo

GRRRR… New York Miss Macy! Mama Bear is in full effect. LMAO!!!!!! I totally think this will keep me warm in the hospital!! Love you my crazy friend!!