Sometimes even I need a reality check

Ronan. I woke up yesterday morning with a Halloween grief hangover. I felt like I had been hit by a bus. I was determined to not stay in bed all day, like every aching bone in my body was begging me to do. I had to talk myself out of doing this and it took a lot but I wasn’t about to give into my grief and let it chain me to my bed all day long. I got ready for the day instead and headed over to my office. Thank god for that place. It is helping me so much. I pounded out a few things that I needed to get done. I had an interview at 1:00 that I so did not feel up for, but the person interviewing me was coming to my office so I told myself just to stick it out and I would go home and crawl into bed, after it was over. Little did I know, that this 22-year-old kid was about to make my day.

I never know what to expect when doing these interviews. They can be emotionally draining most of the time and quite honestly, I don’t love doing them. I would rather just hide behind my computer all day wearing my spirit hood, glasses and pajamas. But I also know that I am very lucky to have the opportunity to get your story out there in a way that will raise awareness for childhood cancer. I know this comes with the territory and is a part of me being an advocate for you and all of these other kids who have been dealt this shitty hand in life. They don’t have a voice. I do. I will use it and scream for you and them as loudly as I can. I will use this platform to do great things and hopefully help change this devastating world. As soon as Tyler walked into the room, I knew I was going to love him. He was so nervous and I could totally tell. He sat down and told me a little about himself and why this story struck such a nerve with him. He had me at hello and the fact that he was wearing a skull shirt, made my day. “Tyler! You have on a skull shirt, I have on a skull necklace! You could be my 22-year-old soul mate!” I tried to put him at ease as much as I could. He had his notebook full of questions and it was so refreshing to see that he had really done his research on my blog and all things you. That made me like him right away and automatically made me respect him right from the get go. It was so refreshing to see he was serious about us, our story, and helping to get our message out there. Our interview went on for about 2 hours. We had a good little thing going back and forth. I was so impressed by him at one point I thought, “I hope Liam and Quinn turn out to be like this kid. His parents must be so proud of who he is and all he stands for.” I told him being interviewed by him was one of the greatest interviews I’ve done yet and I truly meant it. I know he is going to do a great job on our story and I can’t wait to see what he does with it. He left me by saying, “Please don’t go home and throw up because this was so hard.” I told him that in no way did I feel sick and the interview was actually really great. I gave him a big hug and told him thank you. I felt like I had just spent the afternoon with my little brother. It was a great afternoon for once and I left feeling totally inspired by the youth of today. Mark my words, that young soul will help change this world in one way or another.

I left shortly after Tyler left. I ran home to do some things. There was a support group going on at the MISS foundation and Dr. JoRo was leading it. As much as I hate support groups, because to me they are so painfully hard, I dragged my butt down there to attend. I’ve only been to one before and it was so awful that I refused to go back. I sucked it up last night for a couple of different reasons and I have desperately been missing Dr. Jo, so I knew that seeing her would be great. My favorite mom’s were there. The mom’s of a baby boy named Noah. I was so happy to see them and was able to spend some time with them. I adore everything about those two except for the fact that they have a dead child, just like me. I got settled into group and we all went around and told a little bit about ourselves and our kids. I felt vulnerable, sad, and scared sitting in that group. I know everyone in the room is there for the same reason so it should feel safe to me, but to me it just feels like the saddest place on earth. Every single person in that room, has a dead child. It is always a wake up call to me, as if I need anymore wake up calls in life. But it honesty is like a slap in the face. I sat and listened to the horrific stories of everyone else. The drowning, the car accidents, the ecstasy story, the stillbirths, the mental illness, the sudden death at school, etc….. Newsflash! Cancer is not the only way kids die. I know this. It made me want to run home and lock Liam and Quinn up forever and beg them to never touch a drug in their life, not drive a car, or leave the house. You think you are immune to your kids dying? You think you are too perfect of a family, for this to happen to? You are not. Nobody is. I think the sooner we as a world start to realize this, maybe we will take less things for granted. Maybe we will enjoy every single split second with our kids because nobody can say when our time is up. Maybe parents will start understanding that being a parent is a privilege, not a right. No matter how much money you have or how protected you think you are. Sitting in that room last night is the most humbling place in the world. Even I myself, need a reality check once in a while to be reminded that I am not the only one hurting this badly. That is why the MISS Foundation is such an important place in the world. Without it I can guarantee you about half of the parents in that room tonight, would have ended their lives. I know I would have. Dr. Jo is part of the reason that I am still here. If you don’t know about the MISS Foundation, please check it out. They have such little funding and need it so badly. It is such a safe haven for all of us parents going through the worst thing possible and Dr. Jo is my absolute idol in life. She is one of the rarest most beautiful souls that I have ever known. http://www.missfoundation.org/

After group ended, Dr. Jo came up to check on me. She knew I was a wreck. She looked at me and said, “How was that for you?” I said, “So Poppy is going to be born dead, right?” I was so shaken up by the still birthing stories. She just looked at me with that wise motherly look in her eyes. “I knew you were going to say that. I know that was hard for you to listen to. Poppy is going to be fine. She has Ronan looking out for her.” I keep telling myself I have to trust in that. I know that Ro. I tell myself that about 100 times a day. I left group beat and exhausted. I came home and crashed out until early morning. I woke up, showered and went to wake up your brothers. Liam was burning up. I put him in a luke warm shower and told Quinn to get ready for school. I had a lot to do today, but canceled it so I could stay home and take care of Liam. He was so sweet and so thankful for everything. I ended up taking him to the doctor to rule out strep because that has been going around. His strep test came back negative and his fever is almost gone. He does look miserable though, so he spent the day resting while I spent the day being domestic around the house. I hate being at home doing all the same things I used to do. Today, I forced myself to cook all day long so Quinn would have a nice meal to come home to after school. Cooking used to be our thing and now it’s just so hard for me to cook without you. Doing anything around the house is hard for me now. I don’t have your clothes to wash, your breakfast to cook, your dishes to do. Not having all of those things to do for you makes doing them sting so badly. Today, I took the day, set myself aside and did things that I knew your brothers would be thankful for. I was right. Quinn must have told me about 10 times tonight, “Thanks for the homemade soup, Mom. It was really good.” This broke my heart in a million pieces. It made me realize that I need to work a little harder around here doing the things I used to do, every single night, such as cooking really great homemade meals. I think the every night thing might be pushing it, but a few nights a week, can be a start. You know why cooking is the most hard for me? It’s because dinner time, with a homemade cooked meal means we have to sit around the dinner table without you. I don’t think that will ever become an easy thing. I often find myself getting anxious and sick to my stomach. Quinn sits in your chair now. I’m just glad someone is sitting there, I guess. He is a good little seat filler.

Your brothers have their last basketball game of the league tomorrow. I hope Liam is feeling well enough to play in it. I’ve made him rest all day and I fed him a good dinner tonight. Hopefully, I can get him to go to bed early to get the rest that he needs. I’m tired too. An early bedtime sounds like a good idea for both of us. G’nite Ro baby. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

Bye Bye Little Sad House! We Have a New Home!

Ronan. Guess what? I had a good day. Another one of those crazy, good days where something so big happens, that I have seriously been jumping up and down all day long. Thanks to all of the amazing people you are just throwing my way, thanks to this blog, and thanks to the most kind hearted, generous people in the world, I now have a new home. As in The Ronan Thompson Foundation has an office! You know how important it is to me, not to spend the money that people are donating on administration stuff. This is why, I have been doing everything from our house. Our sad little house where I often work from our dining room table, our kitchen table, and even my bed. Our sad little house that leaves makes my skin crawl during the day because I miss you so much. I did not want to use our money, to rent an office space so I did the best with what we had, which was our house or one of the 5 Starbucks that I troll on a regular basis.That Starbucks music was about to make me slit my wrists. But now we have an office! And the people that work in this building, could not be lovelier! They are giving me access to all of their conference rooms, space, and my very own office with a door and all. They even have a COKE machine! Holla! (but don’t tell Poppy. We are almost totally off caffeine) It is the most beautiful building and it even has a basketball court which your brothers are so excited for! They just handed me over a key, and voila! Welcome to our new home! I took Becca and Stacy there today. They both cannot believe this. Carolyn called me and left me a message that said something like, “This is the yellow brick road and you are Dorothy!” That make me smile so big. It just tells me, once again, what we are doing, is so right. If it was not, things like this would not just continue to happen over and over again. Thank you, Amy for hooking this up. Thank you, V and K. For being so kind and generous today. I can not wait to have an actual place to go to where I will be a thousand times more productive. And maybe a little less sad. Watch out childhood cancer! I’m really going to kick your ass now! I promise to be the best little tenant ever.

I have been reading all of your comments today. I had forgotten about that story that happened while Woody and I were in a Nordstrom Rack in San Diego. The one where I was watching that little girl play in all the clothes racks. I was mesmerized by her. I had just lost you. I heard her mom call out her name. “Ireland!” I almost fell over. I went up to the mom. “What is your daughters’ name?” She just looked at me and said, “Ireland.” I smiled and said, “It’s beautiful.” That has been our girl name, for about 10 years. I wonder if that was a sign of what’s to come. I have a few more weeks before I will find out. Ireland Ronan. I think you would have loved that name. We shall see, right Ro baby. If this baby is a girl, I will fall over. I never thought I would have a girl, but have always felt like I was meant to have one. I will be just as happy if this is a boy, too. But oh, how much fun would a little baby girl be. My due date is April. I have a ways to go. I think I am starting to feel a little better and pie is still my best friend. Meat is still my enemy. So much so that I am wondering if I’ll become a vegetarian after this. The thought of this made me laugh due to Dr. Jo. She is a hard core vegetarian and has been so for over 20 years. I often give her crap about this. She would fall over if I became a vegetarian. I used to love my meat, but now I think I know how she feels. I don’t my hatred with meat will last, but as of now the thought of it makes me ill. Pie. I’ll just stick with pie for now.

Your brothers have a basketball game tomorrow. They are at practice now. We are going to go to dinner when they get home. We don’t have many plans for the weekend. Most of our weekends are low key. A lot of time at home, which is still hard for me. Our house still to me feels so empty and sad, without you here. I don’t understand how even watching your daddy and brothers, watch football is normal now. As in, this is exactly what they would be doing if you were here but you are not here, so how are we doing the exact same things? The exact same things feel so wrong and are so hard for me. I wonder if this will ever get easier. I often feel like after you died, we should have just up and moved to freaking Australia or somewhere crazy. So we would be doing all different things. I know that running away would not have solved my sadness, but living in the same house, without you is hard for me. It’s comforting to your daddy and brothers so this is why I stay here. I sacrifice myself, for them. Having my own office, is going to help so much. Having my own space without your little empty bedroom 10 feet away from where I am working is going to save me. Once again, I am so grateful and humbled by the kindness of strangers.

It’s late now. We went to dinner. I ended up throwing up in the bathroom. Quinn was eating a piece of steak beside me. I couldn’t take it. I tried my best. We are home now. I’m begging your daddy to go and get me a pie from the store. Because he is the best daddy ever, he will. I’m tired. It’s been a long and busy day. I missed you tonight, when we were riding in our old jeep to the restaurant. Oh, how you loved that thing. Kind of broke my heart, to be in it, without you. Ronan, do you want to know the one question I get asked, all the time? It’s so funny. It’s the “Who is Mr. Sparkly Eyes.” A lot of you, ask that in my comments. How do I even put into words, who he is? I could describe him in a thousand different ways. But the most important thing is he is someone who loved you so much, Ronan. He is someone you loved so much. You two had a bond and almost a secret language. I know he is connected to your soul and you are to his. He is doing such a good job, of watching over me for you. He is quite simply probably one of the few reasons that I am still alive. He has saved my life and for that, I have you to thank. Thank you for him. I thank you for him, every single day. Some things I like to keep private, like people’s real names. Same with our Fairy RoMo. I have to have some things I keep to myself. Those two, will always go by their nicknames.

I love you, my little seal. Ah, for those of you who have also been asking… the logo for Ronan’s Foundation is a little seal, because that is what his name means Irish and Gaelic. I love that so much. A little seal with the biggest eyes. So sweet. Goodnight baby doll. I miss you. I love you. I hope you are safe.

xoxo

13 months without you and 9 years with Liam and Quinn

 

 

Ronan. Turns out, I don’t do so well, in Coronado. I don’t think I did so well here last year, and I don’t think I’m doing so well here, this year either. It just dawned on me, a few days ago as to why. It dawned on me, while I had been sitting in bed for the entire day, watching one certain video of you, over and over again. The video is of you, when you were maybe almost two. I shot it right out in front of the beach that we have been playing at every single day, since getting here. It might just be one of my most favorite videos I have of you. Where you are sitting in the sand, you take a handful of it, shove it in your mouth and eat it. I yelled to you, “Ewwww, Ronan!!! Don’t eat the sand!” You looked me dead in the eye, and shoved some more sand in your mouth and ate it, again. I love that you ate the sand. I love so much, that you ate the sand, again, even when I told you not to. I cannot come back to Coronado again, next year. I cannot keep coming to the same place, that we used to take you every year, without you. Not having you here, and trying to make all these new memories in the very same spot I spent so much time with you, is not happening. It’s making me sick to my stomach. I keep looking for you in the pool that I used to watch you swim in, the beach that we used to run on, the grass we used to play in, and you are just not here. This is the last summer that we will come here. I cannot do this again.

I have been taking your brothers across the street every day to play basketball. And I’m not the kind of mom, who just sits on the bench and watches them play. I’ve been playing with them. Engaging, encouraging, running, and jumping with them. Doing it all when it takes everything I have, to do all of this. I was doing fine, until a mom came into the empty gym with her 3 boys. An older boy who was about your brothers age and twin boys who looked to be about 3. I was doing fine, until this mom started playing with her 3 boys too. I looked over at them, laughing and shooting the basketball. I tried my best to ignore them. I was getting ready to make a sweet lay-up, and all of a sudden, I felt like I no longer had the attention of your brothers as I could feel their eyes, elsewhere. I stopped what I was doing to see why it was that nobody was guarding me or trying to block my shot. My eyes fell over to Liam and Quinn. They both looked like they were in a trance and were stopped dead in their tracks, watching this mom and her 3 boys. I did my, “Hey, you guys! I’m going to score on you!” But they both didn’t budge an inch. They were totally engrossed in this mom and her 3 sons. I wanted so slit my wrists, right then and there. I tried to throw my basketball so hard into the backboard, that is shattered the glass, everywhere. That plan didn’t work. That glass is pretty resistant. You know what isn’t resistant? The palpable pain in your brothers eyes. The way I swear I could see your reflection, in their eyes due to the way they both miss you, so much. I did my best to distract the situation at hand and it took everything I had not to just stop and scream at the top of my lungs, ” HEY! LIAM AND QUINN! STOP STARING AT THAT MOM AND HER 3 BOYS! JUST STOP! I KNOW THAT SHOULD HAVE BEEN US! I KNOW I PROMISED YOU THAT RONAN WOULDN’T DIE! I KNOW RONAN WAS OUR ENTIRE WORLD! I KNOW HOW MUCH YOU MISS HIM! I AM SO SORRY FOR EVERYTHING! I AM SO SORRY NOTHING WILL EVER BE THE SAME! I AM SO SORRY WE ARE ALL SO SAD AND WE HAVE TO LIVE WITHOUT HIM! BUT PLEASE, STOP STARING AT WHAT SHOULD HAVE BEEN AND WHAT WILL NEVER BE AGAIN! PLEASE! IT’S KILLING ME!” I didn’t yell that. I gathered your brothers up instead and we left the gym. We came home, I fed them lunch, and then they went off to play with your cousins at the beach. I stayed behind and sunk into bed for the rest of the day. I think I’ve been in bed, off and on, for days now. I’ve been going for some runs, here and there. I’ve been surfing a little. I’ve been crying a lot. Quinn asked why I’ve been sleeping so much. I’ve been sleeping a lot more than normal. I guess not as much sleeping, but more laying in bed, crying. I woke up crying this morning. Your daddy wanted to know what was wrong. I told him the same as always, but today my sadness seemed extra heavy. It wasn’t until half way through the day, that I realized that today is the 9th. 13 months now, since you’ve been gone.

Today, is your brothers 9th birthday. I cannot even believe, it’s been 9 years since I had them. They have grown up so fast, in the best and worst way possible. The best being that up until losing you, they had the best life possible. Since losing you, they have had to grow up in a way that one should never have to grow up. They are more insightful, compassionate, and wise beyond their years due to watching their little brother get cancer, and then die from it. I would not wish their wise beyond their years ways, on anybody. We all did the best we could do today. It was actually an o.k. day and your brothers seemed to have a great birthday. Thankfully, they have your cousins here to take away some of the sadness. They spent the day playing basketball, video games, swimming, and now they are all tucked in having a sleepover and watching a movie. We all dropped your daddy off at the airport tonight as he had to go back to Phoenix. It’s always extra sad when he goes. He won’t be back until next week so I’ll have to figure out a way, to find my pretend happiness while he is away. I cannot just lay in bed, crying all day as your daddy is not here to take your brothers off and away so they don’t see that. Thankfully, your New York Miss Macy is coming in on Thursday for a few days. I can be guaranteed some happiness on the days that she is here. She is the sunshine in my life that always makes everything better. The days are less gloomy when she is here. A true gift from you indeed.

This is all I can write tonight. I’m tired from the day. Happy Birthday to your brothers. I am so lucky to be their mama. They are the best things that I have left in my life, besides your daddy. I love you. I miss you. I wish you could have been with us tonight. I tried not to cry as I watched them blow out their candles. Everything they do, is a reminder to me, of what you are not here to do. I’m sorry, baby boy. I hope you are safe.

xoxo

Did I die? Nope, it was just the flu.

Ro baby. It was bound to happen sooner or later. The way I run myself ragged, I’m surprised it took this long. It started Wednesday night. I was getting ready for our little board meeting and I should have suspected something….. but I just chopped it up to being tired. I went to our meeting, did my best to formulate my thoughts with this heavy fog that was hanging over my head (tiredness or so I thought), came home 4 hours later (meeting very productive) crawled into bed and by that time, every inch of my body was aching. I threw off my clothes, washed my face, and curled up in your bed. I don’t think I moved for the next 24 hours. I slept for about 16 hours straight. When I did finally wake up, I felt like I had been hit by a truck; several times. I spent the next couple of days, wishing for death just due to how physically awful I felt and for the first time, it was due to something else then the loss of you. It was official. I had the flu. And there was nothing I could do about it. I gave into it. I let my body break down like it has been wanting to do. After about the second day of being extremely sick, I started to come about and realized my surroundings again. Grief, reality, Inferno Fuckwad Bob, were all there waiting for me. I woke up to a quiet house. Alone. A heavy wave of sadness washed over me. I’m alone. I’m sad. Why is the house so quiet? Where’s Ronan? Ronan’s gone. Ronan’s dead. You are alone. Nobody wants to take care of you because you’ve been so mean. Because you’ve pushed everyone away. I started to cry. My phone rang. Of course it did. You always make sure of this. I pick up and say hello to our favorite lovie and I give him my best I’m not crying or sick voice I can. It doesn’t work.

Mr. Sparkly Eyes: “Why do you sound like that? What’s wrong? Why are you not at your F U Cancer Starbucks office today?”

me: “I’m sick. I think I’m dying. I’m sick. I’m alone and I have nobody to take care of me.”

Mr. Sparkly Eyes: “Well, how are you going to Fuck Cancer if you are sick?” the chuckling begins. “I’ll bet you are the WORST sick patient ever. You being sick, unable to do things, just does not go hand in hand.” the chucking continues.

me: UGH. I’m too sick to laugh. But I laugh anyway. “Why are you laughing. It’s not funny. I’m really sick and alone and nobody wants to take care of me.”

Mr. Sparkly Eyes: “You are not alone. You have plenty of people who would love to take care of you. I know how stubborn you are and I know how you won’t let ANYONE take care of you.”

me: “I hate that you know me so well. Not really. I love that. Thank you.”

Mr. Sparkly Eyes: “I miss him. I’ll check in with you later. Please rest. This does not suit you at all.”

me: “Fine. Agreed. How are you always right? It’s starting to annoy me. I love you, Sparkly.”

I hung up and listened to your Sparkly and went back to sleep for the next 8 hours. I let the tears, sweat, and vomit take over my world for 3 days straight. I almost made your daddy take me to the ER as I thought I was massively dehydrated. The thought of the ER and the reality that would come with it, kept me at home, chugging Gatorade. Finally, late last night, I started to feel better. I poked my head up out of bed to get a peek at your daddy who was stripping sheets, washing blankets, and tending to your brothers. Thank RO for that daddy of yours. I tried to get to sleep at a decent hour last night but my achy body and the thoughts of you, were consuming me. I found myself, on my phone, looking at pictures of you. Starting from before you diagnoses to the months after. Oh, there’s perfect infant Ronan. Then perfect baby Ronan. Then perfect toddler Ronan. Then perfect little boy Ronan. Then perfect your baby has cancer Ronan. Then perfect your baby has cancer Ronan, but we will fix him. Then perfect your baby has cancer, Ronan but we can’t fix him……. Then the pictures just stop because no more can be taken. So I shoved the phone away and rocked myself as I sob and cry and cry. What do you mean, no more pictures of Baby Ro? He was mine, how can that be? What do you mean, I can’t talk to him anymore? He was my best friend, the love of my life….. this can’t be real. It cannot be real because it is too awful. Things like this don’t happen in real life, right? Things like this don’t even happen in the fucking movies so how can they possibly happen, in real life? Fuck this FUCK THIS FUCK THIS!!!!!!!!!!!! I just want my best friend back. Please!!!!!!! Somebody make this not real because it is too horrific. I’m up out of my sickness coma. I’m better. I’m pacing the house now. I’m looking for you. The screaming won’t stop now. I grab my Ambien that I now only take due to emergencies. It was an emergency last night. I was like a wild animal out of control. I needed the blackness of the night that only exists due to this little frienemy of mine. Swallow pill. Sheets drenched. Pillow case soaked. Clutch phone to look at your face. Your sweet little face. Blackness engulfs my forever painfully aching body of grief. Lights out for the next 7 hours.

I wake up to the fucking sunlight obnoxiously screaming in my face. Dude. Can’t a vampire/zombie catch a break around here? Would it be too much to ask for the happiness of the world to just go on vacation for a day? Not today. Today you will be slapped in the face with the reminder that everything is AWESOME in AZ because it is a perfectly sunny happy fucking day. Even when you have a dead kid, life just goes on. Or so the outside world seems to think. Even the weather agrees.

That’s all for now little man. I miss you so much. SO much that I somedays think this still cannot possibly be real. But then I see your Urn staring back at me and I am quickly reminded that it is and there is nothing I can do about it, to bring you back. For that, I’m sorry. I am so very sorry. I love you. I miss you. I hope you are safe. Please keep watching over Ben with the Bald Head for me. Thanks for making it rain on him the other night while he was out for a walk with his mama. I love you, Ro. Sweet dreams.

xoxo

Baby Danger Plan….. Activate!

Ronan. I know you know when I’m quiet on here, it’s when I’m at my worst. Dr. JoRo keeps telling me to be kind to myself. I haven’t been. I’ve been downright mean to myself. I say I’m not depressed as I feel it is so unfair to diagnose one with depression when they are going through something like losing a child. It’s just another thing that is wrong with this oh so not compassionate world we live in. It is much easier to diagnose somebody and walk away. It is much easier, to label them. Or put them on a pill and not deal with the real issues at hand. I’m not depressed. I’m just really, really sad. I guess this is probably what it feels like to a normal person who suffers from depression. I wish I were just a normal person, who was depressed. I wish I wasn’t this way, because you died. I can hardly remember what I was like before all of this. I’ve been hiding out a lot. I didn’t go to the holiday party with my small group of closest besties on Saturday night. Little M hosted it like she does every year. I miss her so much. I’ve now missed our holiday party, two years in a row. I went for a run in the dark instead after I had been in bed all day long on Saturday. But Saturday wasn’t my fault. I was hit with a 100 pound brick when all I was trying to do was be a normal mama. Liam and Quinn had a basketball game early on Saturday morning. I didn’t want to go, but I sucked it up and I did. I wasn’t prepared for what I walked into. A gym. Full of I swear, what was 200 people. That’s what it felt like to me. An encounter where I felt like a deer in headlights and I swear all eyes were on me. An encounter that has been a long time coming, but I wish it had been anywhere but there. A basketball team that all of your friends from preschool, were playing on. Mommy friends that I have not seen in a very long time. A basketball game that you should have been playing in. You weren’t. But everyone else was. I think I blacked out for much of this encounter. Or at least I left my body. I was hysterical. I ended up on a bench, trying to focus on your brothers but all I could do was look around at all the empty faces in the gym, waiting to see you. I didn’t find you. You didn’t come. I was left there, alone, to pick up the pieces as always. I wanted to run away. At one point, I almost bolted. I tried but it felt like my feet were glued to the gymnasium floor. I stayed. But I didn’t clap and cheer. I cried instead.

After I got home from Liam and Quinn’s basketball game, I crawled into Liam’s bed. I passed out. I stayed there, until 6:00 at night. I only got up when Danielle called to ask if I wanted to meet her for a dark run on the canal. How could I turn down a run after the day I had? I couldn’t. We ran. We talked. We parted ways after about 4 miles. She ran to her house. I walked on the dark canal alone. I stopped to look up at the moon. I stood and looked at the water. I stood and contemplated if I would really drown if I jumped into the canal. I stood for about 15 minutes playing out the scene in my head. I decided that death would probably not be the outcome, so it wasn’t worth it. I would have ended up wet, cold, and lord knows what kind of creepy crawly dirty rodents live in the canal. My fear of those things, stopped me. I finished up my run and came home to your daddy and brothers. I fell asleep with Quinn in his bed. I decided that Sunday, I was in a funk in a bad way. I gave myself a pep talk to try to get myself out of it. I decided that a hike was necessary. Mandy came over and we went. I told her that we needed to hike the mountain, barefoot. She is crazy enough that she didn’t even look at me twice. I think her shoes were off, faster than mine. We hiked. I ran. I got a lot of weird looks. It felt good to feel the pain beneath my feet. It made me feel alive. I came home and we had Kenny, Stacy and their kiddos over for dinner. I played with Kennedy. Oh, that little spicy girl. She reminds me so much of you. She let me paint her nails all pink and sparkly. We ran around outside. We played a let’s scare the boys game. We played your hot lava game, outside. I tried to feel happy. It only made me miss you more.

I spent today, Monday, being productive. I woke up to the pouring down rain. My favorite days. Our favorite days. I dropped your brothers at school and was determined to get in a hike. I ran up our mountain in the cold, windy rain. I stood at the top and let the wind whip around and slap me in the face. I watched the gray skies as they came pouring in and the rain and wind got more and more angry. I headed down the mountain, running as fast as my legs would carry me. I didn’t see another soul there. Only Inferno Fuckwad Bob met me. I wasn’t happy to see him but I did my best to pour my energy into myself and you. I tried not to give in to him. I got a lot done today. I got a lot things crossed off of my list. I survived. I’m here. I’m trying to be happy about it, but I’m not. Oh! But I know a nice thing that happened today! I stopped by Katie’s to check in. I actually hung out in the back of her store and worked on some foundation things. I had my headphones on and I was on a mission to get some things done. As I was getting ready to leave, I headed to the front and I saw a lady buying some of your bracelets. She looked like the nicest grandma and I wanted to hug her the moment I saw that she was holding your Fuck You Cancer, bracelets. I sat and watched her for a minute before I said, “Hi, I’m Maya.” She looked so surprised. She gave me a big hug and told me she was buying the bracelets for her granddaughter who lives in New Jersey. She said her name was Ally. I knew who she was talking about right away. I try my best to keep up with your lovies, Ro. The ones who are always reposting about you, who talk about you, who Facebook, and Twitter about you. I try my hardest to always be thankful for these lovies as they are all going to help change this disease. She told me her granddaughter would be so excited to know that she had met me. She told me all about the essay she wrote about you for the college she was applying to. She got accepted and she’s getting a scholarship too. Her grandma called her while I was in the store and put me on the phone with her. It was the sweetest thing ever, Ro. This sweet Ally girl, couldn’t even talk, she was crying so hard. I told her how thankful I was, for her support. How excited I was for her college opportunities. I told her I hoped I would get the chance to meet her someday. It made my day. See Ronan. You are changing the world. Look how inspiring you are, to all kinds of people everywhere. It’s such a good thing to be wild and free.

I need to start being wild and free. I told my Mandy Bee this yesterday. That we needed to do something dangerous this week. I told her to come up with a plan. She did. We will execute, tomorrow. As for now, I’m keeping it a secret. I will tell you more tomorrow. I need to blow off some of this steam. I’ve decided that something, “dangerous,” needs to happen every week in order to give me something to look forward to. I’ll be accepting suggestions from you all. Don’t disappoint me:). I know you won’t. I’m going to create a Ronan’s bucket list and live it out, for you. I’m game for anything. I like a challenge. I like to try new things. This could actually turn into something really fun. We should all be living our lives doing new and exciting things. Even if it means, spending the day in a library or going to a movie alone. As long as it’s something that you normally wouldn’t do. Ronan, we didn’t call you Baby Danger, for nothing. I’m going to start embracing this Baby Danger of mine. It was my favorite nickname for you. Get busy living or get busy dying. I’ve got one foot stuck in both worlds right now. It is beyond confusing. It’s beyond sad. I need to make some plans, otherwise I’m going to sit here and just drown in these tears. You would be so mad at me and the way I’ve been, Ro. I know this. I’m sorry. I’m making plans, baby doll. Lots and lots of plans.

I’m going now baby. I love you. I’ll be extra spicy for you tomorrow. Sweet dreams beautiful boy. I miss you so much. I hope you are safe. Oh, Ro baby. I need you to watch over Mia for me. Please. I talked to Sandra tonight. Mia is trying so hard to get better. I need you to help her, please. This is so not fair, for any of them. It is killing me. They need a break. They deserve a break. Please. Send Mia the strength to get better. I know the way Mia is fighting, is because you are helping her. I know that is you. Keep going baby. She needs you more than ever.

Also, lovies….. if you want to do something sweet, send Mia some mail. I’ll bet this would brighten her day. She is in Philly now, at Chop. What little girl, doesn’t love getting mail?? She loves kitty cats, sparkly things, hello kitty, princesses….. all things girly and fun. Have your kids, draw her a picture or write her a sweet note. I know she is missing home. I know she is missing her family. I know this would make her smile. Here is her address. They will be there, for awhile. At least another month. Thank you so much. For something so little, it means so much.
Children’s Hospital of Philadelphia
Seashore House
Patient: Mia Foutz, Room 300
34th Street and Civic Center Boulevard
Philadelphia, PA 19104 – 4399

xoxo

Ro baby. Super Nate’s mama sent me this picture tonight of him, by your tree at PCH. She said his jaw dropped when he saw it and thanks for making their day. This picture made me so happy but then I ended up on our bed, tears pouring. For so many reasons. For you. For me. For us. For Nate. For Nate’s parents. For everyone out there, dealing with cancer in whatever way, shape or form. For anyone who has ever lost a child. The reasons were endless. I miss your bald head. So very, very much.

I know you’re yelling out to Nate, “May the force be with you, Super Nate!” You’ve got to help him too. I know you will. Thanks baby. I love you.

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.

Fake it till you Make it

Ronan. Hi baby doll. So, last night…. not so much fun. I fell asleep from 11-1. Was up from 1-4:00. Slept from 4-6:00. Rise and shine, adrenaline pumping. I could not sleep last night to save my life. I wandered around the house, looking for you. I went into your room and wrote. I sat and cried. I took more Melatonin. It didn’t really work. I know why. It’s because today is Esther’s 4 months since she passed away. I was worried about Doriet. I called her this morning, after I took your brothers to school and had some time before I went to see Dr. Joanne. I needed to hear her voice and to let her know I was thinking of her. It felt good to talk to her and tell her I love her. I do. I told her I would come and see her. I really want to. I really need to. I will.

I saw Dr. Joanne today. I took your “GiGi,” blanket with me and wore my locket full of your ashes. We went over the worksheet today that she had me do. I started to cry as soon as we started going over it. She said I was really feeling it today. I was. We talked a lot about you. We talked a lot about me. I told her about the strong desire I have to still take care of you. How taking care of you, now comes in the form of taking care of me. I told her that I feel like I have to hit rock bottom, how I have to walk through Hell and back, to get through this. I told her how you are worth every amount of blood, sweat and tears that I have in my body. We talked a lot about expectations. She is glad that I am strong enough to stick up for myself and go through this the way I need to. Not the way anybody else thinks I should. I love her. She is such a powerful soul. She told me today that she can tell I feel like I have one foot in the world of the living, and one foot in the world of the dead. She gets it. She was exactly right. Nobody can understand the true pain of losing a child, unless you are a bereaved mother yourself. This journey is mine and mine alone. Nobody else’s. I am o.k. with that. I prefer it like that. The session was good.

We were about to end on a pretty good note, but then I had to pull out the journal that I found while cleaning out my desk a few days ago. I guess deep down, I’ve always been a writer. I’ve written for as long as I can remember. Never anything I was serious about, but I’ve always loved it. My words have always been hauntingly honest and insightful, but I never bothered to share them with anyone but myself. I never thought I was any good at it. Never had a reason to be. I found some really disturbing words written down, 2 days after your diagnoses. Call them my insightful ways. UGH. She sat with my words for a while and seemed taken aback. She was going to give me some homework, but decided we are going to take my words, and have me sit with them and to talk to you about the things I had written. To listen to what I would hear you say, back to me. I can do this. I can do anything for you.

I came home from Dr. Joanne and changed my clothes. I went and checked some things off of my “Shit List.” I went Inferno Hiking. I had a conversation in my head with the pretend paramedic who I was going to need to save me from that Pink Rattlesnake I’ve been dreaming about. I told the pretend paramedic that I was not afraid to die from the poisonous venom of a rattlesnake. That if my time was up, than my time was up. I told him how I had you waiting for me and if we were meant to be reunited, my life, would be ending in exactly the way that it was supposed to. I told him how you must miss me so much, that you are ready to have me back taking care of you again. I told him how I was not scared at all and I said all of this with a smile on my face. I have conversations in my head all day long with people I don’t even know. I have conversations with you a lot. “Landslide,” played on my iPod. I looked behind me when Stevie Nicks sang,

“I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down.”

I turned around and looked for you. I couldn’t see you. I cried as I ran as fast as I could up the mountain today. I screamed for you. I whispered for you. I listened for you. I pretended to see you, running up the hill behind me. I wished for death. It didn’t happen. I ran as fast as I could back down the mountain, hoping to fall and break my arm. Anything to feel a break from this pain of living without you. I made it to the bottom, soaking wet, but safe and sound. Guess today was not my day to walk with you again. To hold you sweet, soft hand and kiss your perfectly plump lips. It’s days like today, that I almost cannot take being without you. I tried to eat lunch. That went over really well. I threw it all up.

I picked up your brothers. They were so happy and excited to tell me all about their day. The good grades they got on their spelling tests, math test, AR Reading points…… They are happy. They are coming to terms with the fact that you are gone and are not coming back. They are so full of hope that the fact that it is not infectious to me makes me think that I am seriously disturbed. NOTHING MAKES ME HAPPY. NOTHING. Try swallowing the guilt that comes from that. I hope someday that I will be happy again. But I am not going to walk around and pretend that I am. Fake it till you make it. As Dr. Joanne said, I sure do put on a good game face. The best I told her.

I took your brothers to Sauce for an after school snack. I sat and watched as they gobbled up pizza and engaged with them, smiled for them, laughed with them. It was fucking exhausting. Also, I’m sure the fact that I had almost no sleep last night, didn’t help. We came home, emptied out their backpacks and lunch boxes and went over their homework. I told them they could have a break, some down time. I crawled under the covers. Your Daddy came home soon after that. I fell asleep for about a half an hour. I woke up to your Daddy, telling me he was going to take your brothers to play basketball. He asked if I wanted to go. I quietly told him, “No,” as the tears slid down my cheek. I felt like I had been run over by a bus. Soon the house was quiet and empty. I got up, unloaded the dishwasher and did all the good mommy/wife things that I am supposed to be doing. I called your Nana, whom I never talk to anymore. I felt guilty as she picked up and I could hear the excitement in her voice. We talked for a few minutes. She told me she is worried about me not eating. She told me she doesn’t want me to end up in the hospital. I told her, “Who cares.” She tried to gently scold me, all while telling me she wasn’t judging me. I told her I knew that. I know she does not. She is a good mom. I promise to call her more often.

I’m going to go now baby doll. I miss you so much. I love you to the moon and back. I hope you are safe.

xoxo

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Is an o.k. day going to be as good as it gets?

 

 

Ronan. It was an o.k. day without you. I had to work for it though. I had to work hard to make it that way and as much as I didn’t want to, I did. I spent the day with your brothers and our cousins. We went to breakfast this morning and then the 4 boys ran off to the Rec Center to play basketball. As we were walking back to get the boys changed, I looked back to make sure we had everyone with us. I almost said out loud, “Where is Ronan?” But I caught myself before those words came out of  my mouth. I so expected to see you running behind all of us. I sat out at the pool with Stacy and her little troops while the boys played basketball. It was weird sitting there in the sun and not having anyone to worry about or take care of. Gosh, a year ago…. this would have been paradise to me. Laying in the sun, headphones on, a book to read, and time to just be peaceful with myself. Today, I hated every second of it. I wanted nothing more but to be worrying about you in the water, to be watching you running around, and splashing about. I would have been so happy to have had the privilege to wrap you up in your little towel after you had gotten out of the cold water. To have held you close to warm you up and then I would have taken you up to our room for your lunch and nap time. We would have napped together like we always used to do. Instead, I watched my dear friend, Stacy, do all these things with her 3-year-old, Kennedy. She is such a little firecracker and reminds me so much of you. She had a total meltdown at the pool which I of course thought was adorable. It was a combination of being hungry, tired and a newly 3 year old. She came and laid down on the lawn chair next to me and put her little head down. I went over to her and rubbed her back for a long time and she calmed down and let me do this to her for about 20 minutes. She then popped up and was fine. It was so sweet but it still hurt. I wanted it to be you that I was comforting, but the fact that Kennedy is slowly letting me into her little world feels good to me. We spent the rest of the day at the pool and I then took your brothers, Jake and Carter over to the grocery store to cash in the recycling bottles that they have saved up. They get 5 cents a bottle and were so excited about it. We took a garbage bag full of bottles over to Vons and I think they ended up getting about 3 dollars out of it. It was important to them and I think a very good life lesson to learn about taking care of our environment and responsibility. They were so excited and happy to spend their money at the vending machines at our condo. All of us adults have been laughing over the 4 boys and their obsession with the vending machine here. It’s as if they have never seen one in their life. They live for meeting up there and spending their change. Such little things but so important to boys who are growing up way too fast. Watching how independent Liam and Quinn are becoming is hard for me. The fact that they are starting to not need me so much anymore because they are big enough to go down to the vending machine alone feels strange. I’m so not used to having things this way. I feel like in the blink of an eye, they have become little men. In more ways than one and unfortunately a lot of that comes from losing you. It’s not fair and it’s not right. I don’t want them to ever feel like they have been robbed of their childhood which is why I am trying to encourage them to be boys and  to learn, explore, make mistakes, but also learn right from wrong. They both have such good heads on their shoulders but when they do things like take a stick and put it up a vending machine to get candy out, and then run to tell me about it, I’m not going to get mad. I want them to be boys in every way possible. Just as long as they also learn there are consequences, but honesty will also go a long way in this family. This is all stuff you should be learning too, Ronan. Your brothers would have been the best teachers to you. I’m sorry everyday of my life for them and for you. I will love them so much more because of your absence. Even though it feels like I have a connection to nothing or anyone, I know it will slowly come back with them. It is days like today that give me that hope.

We had Stacy and her kids over for dinner. Afterwords, we drove over to Pinkberry for Frozen yogurt. I had an unexpected feeling of happiness wash over me when I went to cross the street with Stacy’s little girl, Kennedy, and she grabbed on to my hand and we ran across the street together, with our hands intertwined. It reminded me of you. I sat and watched her devour her frozen yogurt and thought about how much the two of you would have loved each other. I had a flash of seeing you two together and the mischief you would have caused. I ached for it so badly. She loves Liam and Quinn and I know she would have been crazy about you. You two would have been two peas in a pod. After our frozen yogurt, Stacy dropped us off and Liam and Quinn were pretty tired. They fell asleep fairly quickly, almost before I could even tuck them in and we said our good nights to you. They are both so tired from their day of swimming, basketball, and playing in the sun. They miss their cousins who left to go back to Phoenix today already. The good news is, there is a new set of cousins who arrived today so I have no doubt they will be just as entertained.

I ended my night with a phone call from my friend, Doriet. I know you remember her little girl, Esther, who passed away just six days before you. We had a good talk tonight and both seem to be in a similar place; struggling a lot but we both know we have to go on. She had the same kind of connection with her little girl that I had with you. One so strong and deep that you cannot even explain it. You two were such similar souls and I feel that way about her mom and I. We loved the two of you so deeply that is was almost not human. This is one of the reasons I know that we have such a special connection. I think about Doriet everyday and Esther too. I hope you two have found each other and are playing away. Doriet says Esther leaves her signs everywhere. She knows Esther is still with her much like the same way I know you are still with me. I want to go back out to New York maybe in the fall to spend some time with her. I want to go back out to take a picture of you to Dr. Kushner and make him look me in the eyes. I want him to acknowledge the way he handled us was not right in the end. I’m going to lose it if I don’t get to close that chapter in your journey. I really wanted to run in the Marathon for Fred’s Team in NYC next year, but I am so pissed that I don’t even know if I can support his cause. How can I support a man who could so easily just brush you off. I don’t care if people tell me to just let this go because I’m not going to. Parents who have just been told the news that I had to be told, deserve more than that. I don’t care if this doesn’t change him or the way he does things, but he is still going to hear me. I need to know that a fraction of him cared and is human, otherwise I am going to forever think we made a mistake in letting him treat you. Maybe he wasn’t worthy of caring for you, maybe it should have been Dr. Mosse all along at Chop. Fuck me. I told Fernanda the second I met Dr. Mosse that it was her,  that she was going to be the one to save you. It was my gut feeling. But then we decided to go with Dr. Kushner because he said he would do whatever it took to save you. He convinced us. Well, he didn’t. He threw us away like an old rag and this will never sit well with me. I’m pretty sure, no matter what road we chose, your outcome would have been the same. At least that is what I tell myself to get though the day. At the end of the day, your dad and I had to pretty much navigate your treatment ourselves and we did the best we could. It should not be this way. We are not fucking doctors. The fact is, there is no cure when there should be. It’s a matter of luck and you got the short end of the stick my baby. I’m sorry a million times over. I’m sorry for you and my heart breaks daily for Doriet. I love her and I know how badly she is hurting because I am right there with her. It’s not fair and it’s not right. When the time is right, I will go and be with her and we can grieve together because that is one of the bonds we have and it is too strong to let it go. It needs to be done for the two of you and for the both of us.

I love you, Ronan. I’m tired tonight and I miss you so much. I will sleep with you in my heart as I do every night as I cuddle up to your blanket. Thank you for helping me to have an o.k. day today. I really needed it. G’nite my sweet, beautiful boy.

xoxo

 

The signs and The stranger

Ronan. I had a hard day. I was missing you extra much today; if that is even possible. We woke up late as we have been doing during these lazy, beachy days. I had a phone appointment to talk to my therapist, Sarah. I walked down the boardwalk and sat on a bench to have our session. I told her how it was easier in some aspects to be here, away from home, but hard as well because of all the memories I have of you here. As I sat and talked to her, there was a little boy about your age playing in the sand right in front of me. He kept taking the sand and throwing it everywhere. So something you would have done. I sat and watched him and cried and told Sarah how much it hurts me to see things like this. How much that deserved to be you playing in the sand and throwing it everywhere. We had a good talk. We talked about how I worry about you and how much guilt comes with having you gone. Guilt for doing silly, normal things. I told her I wonder if you are watching me and can’t believe that we are all trying to do things that make us happy. I wonder if it hurts your feelings. It hurts my feelings, Ronan. I don’t like doing all the things we are doing without you. I told her as much as I would love to believe in the picture perfect world of heaven, with you dancing with angels on clouds with harps playing in the background; that I don’t. I’m having a hard time with the not knowing part. We ended our conversation much like the way friends do. She worries about me and told me to call for anything. I will talk to her next week unless I need her sooner.

After I returned back from my talk with Sarah, your Daddy took your brothers over to the Rec Center to play basketball. I crawled back into bed and slept for a couple more hours. I cried and slept and cried and slept some more. I did not want to leave my bed today. I wanted to stay in bed with your blanket and think about you. Right when I was trying to talk myself into getting out of bed, Mr. Sparkly Eyes called. I swear it is always you who tells him to call when I need a good kick in the ass. As soon as I answered he asked what was wrong. I told him, nothing, but everything. He asked if I was o.k. and then said he knows I’m not, that I’m hurting like hell. I cried for the few minutes that I talked to him but he then made me laugh by asking me if I was crying because the ocean from surfing kicked my ass yesterday. I then make some remark that it was the other way around and I kicked the ocean’s ass. He then said, “That’s my girl.” It was something so little but it made me feel better. For about 2 minutes anyway but that’s better than nothing.

Your brothers came back from basketball and were begging to go down to the pool with Jake and Carter. I said I would of course take them so we spent the afternoon down there. I absolutely love being with all 4 of those boys, Ronan. I love to watch them play and laugh and Liam and Quinn are so happy with them. I was watching them run down the boardwalk tonight and I pictured you running behind them, trying to keep up like you always did. You were always so much older than your little 3 years as you could hold your own as well as your brothers. At one point, I looked over and Carter had his arm around Quinn as they were walking together. Such a big brother thing and it made me tear up because that is so something Quinn would have done to you. You would love being here with all of your cousins. They are the sweetest kids.

After our day at the pool and brrrrrr it was freezing, we had Kenny, Stacy, Mac and Kennedy over to grill again. We all sat outside and the kids swam and we enjoyed our time together before we were all frozen solid. The 4 boys continued to jump in and out of the pool and hot tub despite the cold air. It was a good night after a hard day. Everyone is asleep now and your Daddy goes back to Phoenix tomorrow. We are going to miss him. I’ve got to figure out how to keep your brothers entertained. They are pretty easy to please so it shouldn’t be too hard:) I am lucky to be able to take such good care of them.

So, after a hard day I can tell you a few things got me though it. One being this silent auction that is going on at The Biltmore this Friday. I cannot believe all the community support and love that has come of all of this. I am in awe, speechless, and so incredibly proud of the way my son has inspired you all. This all came together in such a short amount of time and the donations and people offering to help in any way they can brings me to tears. I want to be there so badly, but I’m not sure if I can. One of the biggest reasons is emotionally I just don’t think I am ready. Ronan passed away such a short time ago and I feel as if the most important thing I need to be doing right now is just trying to mourn him, respectfully, and to take care of my twins. There is also that whole guilt thing I am dealing with. This is a totally new emotion for me, as I’ve never really felt guilty for anything in my entire life…. and I’m having a really hard time learning what to do with it. I’d be lying if I said I wouldn’t feel guilty for being at this event when it feels like such a celebration for Ronan; which it should be and  I am so thankful for that. But, I, as his grieving mama, am just not ready to celebrate him in this way yet. Please know that I would love to meet all of you who are doing so much to support Ronan’s cause and there will come a time when I can mentally be in that place, but it is not now. Everything is too fresh and raw. I will be thinking of all of you though as you all have impacted my life in a huge way. I now hear all the time about how Ronan has made you review your way of life, but please know all the love and support coming from each and every one of you is changing me as well. You make me believe in the power of selfless love and what it means to be a part of something bigger than yourself. You all make me believe that Ronan and I can change the world into a much more beautiful place. So thank you from the bottom of my heart for making this event happen all of you little busy bees out there. I just know the sky is going to be filled with the brightest stars that night.

A couple of other things that helped me though my day came in the form of some emails that I would like to share. One, I got permission to share. Her email was so sweet and I loved what she had to say. Thank you, Alicia for this. I loved hearing how your day ended. Here goes…..

Maya, Sorry to disturb your family time but I HAD to let you know what I experienced today. After a hectic day, I had to rush to pick up my girls (6 & 4 in 2 weeks) from school, rush home to get them dressed & to a reception for the team my husband coaches during his off season. We made it to the Botanical Gardens with minutes to spare. I got the kids out of the car & they took off running. Taylor (6) ran towards the venue, Ashley (3) ran straight to & through a giant mud puddle. There was mud everywhere, all over her white dress, face, hair. I was PISSED. We’re already late. Now I have to go home & change her. All that was running through my mind is how our being late would look & what people were going to say/think. I ran over to Ash & as I reached to grab her, a HUMMINGBIRD flew between us. My hand was inches from her arm & there couldn’t have been a foot of space between our chests & all of a sudden there it was. I jumped back. It hovered there for a few seconds, flew around Ash 3 times & flew off. It honestly took my breath away. I instantly though of you & Ronan & how selfish I was being. You’d do anything to have Ronan dirty some clothes & make you late. When we released the balloons for Ronan, I promised I was going to be a better mom, wife & friend. Now, here I was worrying about stuff that doesn’t matter, about people who don’t matter. I honestly believe that hummingbird was your son reminding me of that promise. With tears streaming down my face, I picked up Ash squeezed her tight & kissed her all the way back to the car. We never made it to the reception, instead we grabbed some ice cream & walked along the bay front, muddy clothes & all. Thank you, to you & Ronan for opening my eyes!

Alicia Joseph
This last email came to me tonight from a stranger but it was such a gift to me. I talked earlier about how I have been wrestling with the perfect heaven world. I swear to god, this is a sign from Ronan as my therapist, Sarah and I had a long talk about this subject today and then this email came in tonight. I cried to Sarah on the phone because I told her I’m having a hard time feeling Ronan around me. All I want is to know he is here and I’m not getting any kind of a vibe. I think right now, Ronan is trying to let me know he is here, but he is doing it through other people. Sarah had a dream about him the other night and he was smiling and waved to her. I know he is here still, I think I just have to get though this deep sadness before my mind and body will be more open to letting him in. Anyway, back to the email from the stranger that I got tonight which by the way, made me cry like a baby. Here goes….
Dear Maya:
I am just another person sucked into your blog. Yes, writing from a ridiculous unrecognizable email address.  I chose to email you privately versus posting this to your blog because I hope this message gets to you and resonates.
I lost 2 friends to cancer, sisters.  1 this past September 2010, as your baby’s fight was beginning, and her younger sister 8 years prior. Every day I ask myself how their parents go on. My friend was 38 when she passed, and her younger sister just 26. The baby and middle daughter of 3 girls.
This email is not going to ramble on about my friends but give you some brief insight on why I want to deliver this message to you. Your writing, your thought process, your profanity and your honesty reminds me so much of my dear friend and I cannot help but feel connected to you because of it.  She fought cancer for 22 years having her first diagnosis as a teenager, and bravely battling recurrence after recurrence. Her younger sister suffered for 4 years, before losing her battle.
The one thing I know my friend loathed more than anything was having others bring up comparisons of their 60 year old aunt bessie’s cancer battle, or their uncle joe’s who was 50 something, and so I do not make any comparison of their cancer, to childhood cancer, whatsoever. It would seem everyone who met her or knew her story felt compelled to discuss a friend or family members cancer fight. Enough already with it. This is your life, your reality, and your pain. There will never be any fitting comparison. Live has handed you the most cruel dreadful burden.
I am not a bible beater. This is also not a religious talk…  I get your whole dismissal of God, and though I was raised Catholic I have had so many doubts about why God would allow things like this to happen in the world.
Now that i’ve told you all of the things this email isn’t – please let me tell you what it is… I am hoping to deliver but one simple message, one which was passed onto me about “heaven” – After my friend passed away, I happened into a church where strangely enough there was a priest talking about death. Something he said, sat with me and I share it with you.
He said… heaven isn’t out there… its not up in the clouds or in some imaginary paradise. Heaven he said is a place filled with love and where you are with God. He went on to say that God is in each of us. When you lose a loved one, they are with you in the truest sense every waking hour and resting hour. I will never think of Ronan as being somewhere out there, but with you. With you Maya.
Everytime I read one of your posts about the girl from the store who said shit and caught your attention, recurring songs on your ipod, your need to run up the mountain alone to find solace, or your trip and fall on your recent run, or a flannel clad girl in the end of May who runs back and stops you in the street, I keep saying to myself… he’s there Maya, he is trying to get your attention to let you know he is right there. No one on earth has more moments of serendipity as you have since Ronan passed away.
He lives inside you, in a place where he can feel every bit of love that you could never express to him through mere words, or even actions on this earth. The place you unknowingly created for him, heaven.  Everything inside you that aches from loving him that is where he is. He is not hurting, not suffering. That priest also said that you can go so deeply into meditation that you can talk to that loved one … in the place where you truly can share your feelings, fears, unspoken words, and you will feel them communicate back with you if you get better at meditating deeply, and finding them. When you take your runs and midnight swims and you’ve beaten your body to a pulp so that your mind is sort of blank, you are getting close to that place where you can find him, at least I think you are. Its a place where you can meditate and be alone with him and ask him to talk to you. Do you think I am crazy? Perhaps.
When you worry that Ronan is out there and you cannot think he is safe or is he wandering around without you.. never never never believe that.  Ronan is trying so hard to get your attention… perhaps even through emails, postings, and blogs from random people.  Every time I read something new from you, I believe it even more. I think I have to point it out to you.
Fuck this life that you cannot kiss his sweet lips and hug him and giggle with him, or cry with him. Fuck life that you never had the chance to fight on for years even when you were prepared to. Life is wretched and miserable and I hate your families pain. FU Cancer. I am not one of these people who thinks Ronan wanted to be “with God”. When you said he wanted to be in AZ with his family. I believe that wholeheartedly. I believe that is why he is still with you. He is not about to leave. He will always be your perfect gorgeous baby boy, and I know you will always mourn and grieve his loss as long as you shall live.
For years my friend had dreams of her sister who passed away before her. The day before she died she told me that she had the most vivid dream that her sister was well, and running and laughing, and asking her to catch her and come with her. She was chasing her sister in the dream, and couldn’t catch her. Her sister told her nothing was hurting anymore.
My friend told me it was the most beautiful dream and the one she couldn’t shake because it was so real. None of her prior dreams she said had felt so real. Even the dreams that for years had her walking up with tear soaked pillows. My friend passed away the very next day. I pray those sisters are together and have no pain, and no suffering.
I am sure you are sick of cliché’s and BS. If you decide this is the biggest load of crap and you want to post it and tell others to keep this shit to themselves then I get that too.  But there is a part of me that hopes and prays you will be able to find my message makes sense to you.
When you told Ronan, to come with you and leave that place, he did it. He went with you and that is where he has stayed and where he will stay. Your soul and his will be locked together for eternity. Keep doing what you are doing. Keep writing to him, keep working towards your goal with his foundation to keep him alive, to bring hope to others, to teach everyone about undying love and devotion. You and Ronan speak to masses of people and can make a difference in this world. He has impacted more people in his short life than I could dream of in my 40 years on this earth.  I wish you so much inner peace and the ability to connect again with Ronan in a much deeper spiritual way. I hope you feel him with you, truly feel his presence. I hope he keeps giving you little signs and that you can recognize them.
-A stranger
Well dear stranger… I wish I knew who you were because your words hit me harder than anything that I have been told so far. I believe everything you just said to me and it makes absolute sense. Ronan’s heaven is with me, with his family, and even with all of you. He has left me little signs everywhere, I just didn’t know how true they were until now. The hardest part of this is not being able to physically see my baby boy anymore, not to be able to touch or hold him. I will never get over that but I have to believe his spirit is still here right next to me and someday, I will meet him on the other side. When it is my time to go. Until then, I will be sad for the rest of my life but I know that I will find a new happy as well. In the kindness of strangers, the love from my family and friends, and pushing forward to keep Ronan’s story alive so we can help other children. I want Ronan to be the voice for children with cancer everywhere. He would never give up this fight so I will do whatever it takes to support him. I couldn’t do this without all of you and I do believe the more people we have on our side, the more we are going to be able to do. So thank you again, for believing in my baby, for loving your beautiful, “perfect,” lives enough to know that Ronan deserved to have that too. And since he was robbed of it, the fact that you are all willing to continue to fight so hard for him with me says so much about the kind of people you are. I am honored to have you with us so we can continue on Ronan’s journey. I love him so much. I miss him so much. And I would give anything to have him back. Somedays, I swear I am going to just die from sadness but then I force myself to think about everything I have that is so beautiful in my life. I have to make a difference for everyone around me; not just Ronan. Liam and Quinn deserve to grow up and watch how if you live a life full of fight, passion, and love…. you can survive and do anything you want. I promise to make them proud of me too, by living our life as if Ronan is still here. By laughing about him, by talking to him, by celebrating him, by loving him forever.
Alright my sweet friends. I’m a snotty mess who needs to calm herself down. I wish tonight what I wish for every night. Blessings for all of you and sweet dreams of Ronan. He is safe… I know this now thanks to the stranger:) Tonight, I will fall asleep knowing that he is not roaming the streets of Vegas. Although, he would have made a very nice newest member of “The Wolfpack.”
G’night my sweet boy, Ronan. Tonight and every night, I’ll fall asleep with you in my heart.
xoxo

And a very special thank you to my Silent Auction Fairy Godmother. Yes, you know who you are. I’m telling you right now, that Ronan is going to watch over you everyday, for the rest of your life. Your generosity and pure love for someone you’ve never even met is unheard of in this day and age. It’s people like you that make this world such an amazing place. Thank you, my dear friend that I hope to meet someday 🙂

The worst of times are the best of times

Last night my very sweet friend, Ed, hooked our family up with 5 tickets to the New York Knicks game and floor passes. It was our intention to take Ronan, but with him inpatient at Sloan, there was no chance of that happening. Mimi and Papa offered to come and sit with Ronan so Liam, Quinn, Woody and I could all go to the game. I felt a little guilty leaving Ronan behind, but I knew how important it was for Liam and Quinn to spend some time with us. The four of us hopped on the Subway and headed downtown to the game. On our walk there, I caught myself getting really upset about not having Ronan healthy and happy and with us. It seemed so weird it just being the four of us. That was not how our family was meant to be. Woody could tell I was getting upset as I was being really quiet as I tend to do when something is bothering me. He kept looking back and asking if I was o.k. I put on my best face and told him I was. I gave myself a little pep talk about how important this was to Liam and Quinn and how I needed to try to enjoy the night as much as possible.

Once we arrived to the game, someone met us and we were taken down on the floor to watch the Knicks warm up. It was beyond awesome. We sat for a good hour and watched the teams practice and then went up to the suite where we were sitting. Before I knew it, I was having the best time. Quinn and Liam were so into the game and it was a great second half. It went into over time and the Knicks ended up winning. To my friend, Ed, who set this all up…. thank you from the bottom of my heart. You have no idea how much the 4 of us needed this time together as a family. It has been a long time since we have done something like that together. It was a great few hours of enjoying each other and something we will never forget. You have created diehard Knicks fans in both myself and Quinn.

Woody slept at the hospital last night and I stayed at RMH with Quinn. Liam went back and stayed with Mimi and Papa. The 3 of them left this afternoon back to Phoenix. Sad to see them go as we will miss them very much. Quinn is still here and has been hanging out with Woody all day while he works. I hate that he cannot be at the hospital with us and I am hoping Ronan will be discharged this week. Dr. Kushner came to see us this afternoon and was very pleased with how well Ronan is moving around. He is using his little arm more and more so that is a very good sign. We talked about the “plan” and as of now we are planning on doing scans again around April 11th. Depending on what they show, we may do another round of this chemo or go on to the NK-Cell trial. The most important thing that matters to me right now is keeping Ronan out of pain. It seems as if the radiation and chemo are doing the trick as far as keeping that under control. I find myself being able to breathe a little easier everyday as his pain becomes less and less.

This week we are focusing on getting Ronan out of here (come on ANC counts!) and spending time with Quinn. He played in the playroom of the RMH house all day while Woody worked. They had some volunteers doing mad science stuff and he had a blast. I am going to be so sad when he leaves to go back to Phoenix with Woody. A part of me really wants him to just stay here. I can’t wait for school to be out so we can have both of the boys’ coming out here more often and for a longer amount of time. It is so good for Ronan’s spirits. He completely lights up when they are around.

I am sleeping at the hospital tonight and Woody and Quinn are off at some movie. Ronan has been playing away with his Star Wars guys and I finally got him to eat tonight. Victory! He ate an entire Peanut Butter and Jelly sandwich and some Mandarin Oranges. His little appetite has been poor for a good week now. I can tell he is feeling better than he has in a while tonight due to the giggles and feistiness he has been displaying. I called him feisty tonight and he looked at me and goes, “Stop calling me spicy! I’m not spicy!” His little voice cracks me up. I spent the rest of tonight telling him stories and singing him songs. We talked a lot about all the people who are going to visit him in New York. I named off everyone under the sun and he kept saying, “Who else, mom?” I love my little conversations with my almost 4-year-old. I love you to the moon and back my little man!!!! That boy will never understand how much happiness he brings me with something as simple as his smile. It’s the most beautiful thing in the world.

My mom is taking the Red-Eye here on Sunday because Woody and Quinn are leaving. I know I am going to be a mess when Wood leaves. He is my rock and I already miss him. I love having him here with us so much. I mentioned before that we do really well in this city together. Not sure why, but we do. Maybe it’s because we are fully focused on Ronan together, without having many distractions. Makes me feel like we can do anything together… including getting our son well. My mom will stay until Friday….. I think. Tricia is also flying in next Wednesday-Sunday. Can’t wait for them both to be here with me. Ronan is very excited as well. My mom has never been to New York so I am hoping to get her and Tricia tickets to a Broadway show so she can experience something New York. I know the only thing she cares about is spending time with us, but I would like to let her enjoy New York and what it’s all about, even if it’s just for a few hours.

That is the update for tonight. I’m a little homesick but trying not to think about all the things I miss in Phoenix. It’s not things… it’s once again just my old life that I crave and yearn for. The only thing that is of importance which is being at home with Woody and my 3 healthy boys. I want that so badly that I can taste it. That’s why I have to keep pushing forward through all of this; so I can get us back there someday. For good. I can see it, I just can’t touch it yet….but I know it’s there just waiting for us. I will never give up on this baby boy of ours and he is never going to give up on me. He promised me tonight that he will stay with me forever. I refuse to let him break that promise to me. I will hold him to that until the day I die.

Miss you all very much. Thank you to everyone who has been checking in on us and all of your offers to help. If any of you that are reading this and are in New York and you want to help us out in any way, I thought of an amazing way to do so. You can donate blood or platelets to Ronan. All the information is down below and it would mean so much to us. And to all of you who aren’t in New York but wherever else you live, if you get the chance, please donate. These two things have saved my son’s life countless times. It is pretty easy to do, fast, and painless. Every time Ronan gets a bag of blood or platelets, I kiss the bag as I like to think I’m kissing the person who donated it. What an amazing thing to be able to do in this day and age and it helps so many people. Think of Ronan when you are doing it and think of all the other lives you are saving. Such a selfless act, and so simple and easy.

Sweetest dreams to all of my lovelies out there. Thank you for your outpouring support and love. Hugs and Kisses from NYC. G’nite!

xoxoxo

pastedGraphic.pdf RONAN THOMPSON Needs Blood & Platelets

Ronan is currently a patient at Memorial Sloan-Kettering Cancer Center in New York City. His treatment for Neuroblastoma requires regular blood and platelet transfusions.

Ronan would deeply appreciate your donation of blood and/or platelets and requests you ask others you know to donate. Donations not used by Ronan will be released for use by other patients many of whom are children.

To benefit Ronan Thompson all designated donations must be made in the Blood Donor Room of Memorial Sloan-Kettering Cancer Center

Please visit www.mskcc.org/blooddonations for complete information about donor eligibility and the donation process for blood or platelets.

For answers to questions and to schedule an appointment that is convenient for you please Contact:

Joe Licata – 212-639-8177

Manager, Blood Donor Program

licataj@mskcc.org

Blood Donor Room – 212-639-7648

1250 First Avenue (between 67th/68th Streets) NYC – Schwartz Building lobby

Open Every Day

Fri Sat Sun Mon 8:30am – 3:00pm

Tues Wed Th 8:30am – 7:00pm

The process for donating whole blood takes approximately1hour

The process for donating platelets takes about 2 ½ hours.

Appointments are necessary- All blood types are acceptable

FREE Donor Parking –

-Somerset Parking Garage, 1365 York Avenue –entrance on NW corner of 72nd Street