I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.
Your Happy Birthday Sparkly smile. I love you.

Turkey, Tears and a little Apple Pie, too

Ronan. Yesterday was one of those beautifully bittersweet days that will forever be. We spent the day at home, together enjoying each other and just taking it easy. I cooked an apple pie while Macy made her pumpkin. Fernanda came by with a turkey that she had made for us. She brought her 5 kiddos, too. I got to get in some hugs and kisses from her sweet baby girls who are 4. I think about that a lot. How they are just a little older than you, before you left this world. I like to sit back and watch them and imagine what you would have been like if you had ever had the chance to be their age. If you would have been here, you would have been running around with your brothers and Fernanda’s boys, shooting toy guns and playing some hide and seek game with them. You would have been in the middle of everything. Fernanda and her gang soon left just as our other friends started to arrive.

Mandy came with her family. Melissa came with hers. Uncle Jay stopped by, too. Soon our house was filled with the warmness and happiness that it sometimes lacks. The girls got all the food ready while the guys watched the football game that was on T.V. The kids all played outside, throwing the football and playing hide and go seek. Melissa’s daughter hung out with us and we did girly things like paint her nails. With sparkles of course. We all sat down for dinner, in the most informal way. Just the way we like it. The kids at one table and all the adults kind of scattered about. All of the girls, sat around our dining room table. The guys went back and forth between us and the football game they were immersed in. It was a nice, low-key dinner. Your absence was so very present though. There is never a time where we aren’t thinking about your or missing you. That goes without saying, always. At one point during dinner, Melissa quietly said a little something about you. That is one of the reasons I appreciate her so much. It’s the little things, such as her simply saying for as thankful as she was to be with all of us, in our home for Thanksgiving, that the reason we were all together was so sad. It is due to your absence that we were in the company we were in. It is so true. It’s because of you, that we are surrounded by our dear friends, some whom we wouldn’t have known if it wouldn’t have been for going through something as awful as this. I started to cry at the table, Macy next and everyone else soon followed. Tears and turkey it was. Tears and turkey it will always be. After dinner, we let the kids beat the shit out of a piñata that has become a tradition of ours during Macegiving. They had such fun doing it but once again, even during all the giggles and excitement, I couldn’t help but think of how unfair that you were not there, to join in on the fun. You would have loved our untraditional holiday, so very much. Pinata’s, mexican food, mullets, mustaches, fireworks and a bit of turkey, too. That’s how we roll on Macegiving. It was a night full of love, laugher, and sadness. Another holiday down. I was just glad to have gotten through it and I was even more glad when it was over. Holidays will never be the same for me again. They just don’t have much meaning for me anymore. They have become something that I feel our world puts so much silly importance on, while the real meaning gets lost in translation. Why do we sit around one day a year and take that one day to try to be thankful for all that we have? Shouldn’t it be like this every single day that we are alive and healthy? I swear I heard more about Black Friday then the actual being thankful for Thanksgiving. That makes me want to vomit. It’s the real world petty bullshit that I have such a hard time with. All week I felt like covering my eyes and ears to all that was going on around me. I don’t want to hear about all the amazing black friday sales. I don’t want to hear about the fightings and shooting over all the sale item stuff. Because at the end of the day, that’s all it is, is stuff. And as we all know, stuff isn’t what matters most in life. But fuck, do people sure act like jackasses about it. Clearly, these people have never watched a kid die from cancer, right? And if so, then I don’t really even have words for that. Don’t get me wrong, I like a good bargain in life. But when it comes the day after I was supposed to sit around and be thankful for all that I ALREADY have, well that to me just seems a little ironic. And stupid. And I want nothing to do with it.

The day after Thanksgiving we didn’t do anything. I was wiped out, Macy was wiped out, everybody seemed to have an emotional hangover. We stayed at home. Cuddled. Watched some movies. Took naps. Ate. I felt like I was in a coma. I forget how the emotionally exhausting these holidays are for me until they hit me the next day. Holidays are exhausting regardless. Add a dead child to that and times it by 1000. It is almost unbearable at times. I knew that I could take one day to gather my strength back up but once Saturday came, I was going to have to face the day. I was glad when Saturday arrived as I had a plan of action. I do much better in the world when I’ve got a plan in place. Without one, I feel like I am just floating around, trying to make it through the day without wanting to slit my wrists. A plan for me, keeps me focused and in line. It’s almost my lifeline in a way.

Macy and I ran around getting some things for your Candy Cart, Ro. We had made a plan with Phoenix Children’s Hospital to do your candy cart on Saturday. In my mind, I was thinking about all of those kids, stuck in the hospital who didn’t get to go home for the holiday. In my mind, I knew of a way that I could bring some smiles to their faces in a really easy way. In my mind, I was also selfishly thinking of me and how I knew doing something like this, for others helps me to get through rough things like Thanksgiving. I also knew your Macy would be honored to be a part of it. I was so excited when Saturday came around it was all you and these kids. We decked out your cart with candy and toys. Thanks to the awesome company, Spirit Hoods, we also had some really great animal inspired hoodies to give out as well. Remember how we used to wear ours in the hospital all the time? How soft they are and how warm they kept your little bald head? They contacted me a while ago and asked if they could send me a bunch. I was of course, over the moon about that. Their hoods make such perfect sense to give to all of these bald-headed babes. Stacy, Mandy Bee and Macy all helped me with the cart at PCH. You should have seen the smiles that I got to see today. You should have seen the way the kids’ faces lit up over the goodies that we brought. You should have seen the way that I felt a little bit happy, being able to do something so wonderful in honor of you. You might think after going through all of this, that I would never want to walk on an oncology floor again? Not true. It is the only place I feel sane in. It is the only place I feel like I belong. Not only did I get to make the kids smile today, but I got to make some parents smile as well. That to me, means just as much. We ended your candy cart day by walking to the elevators and I hadn’t really seen any of us cry yet. I looked over at your Macy and saw her wiping away her tears. That gets me every time. Once she starts, I start and then there is no stopping it. She said something ridiculous like, “I’m sorry. I have a crying problem.” I laughed and thought to myself…”A crying problem? I don’t think so. More like the biggest most genuine heart I’ve ever seen anybody in my life, have.” I don’t know what I would do without that girl, Ronan. I thank my lucky stars every single day that she came into our lives when she did. I thank my lucky stars every single day that I watched the two of you, fall head over heels in love with each other. I thank my lucky stars that she is still here and is still one of my very best friends. Thank you, Ronan for our New York Miss Macy. She is my sunshine during these very dark days.

I’m tired. It’s late. I miss you, so very much. I miss you. I love you. I hope you are safe. Sweet dreams, baby boy.

xoxo

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Oh, Hey Cancer! Fuck you! Seems like an appropriate title tonight.

Ronan. Your daddy left for Vegas. This means I get to hold down the fort while he is away. Normally this wouldn’t be a problem in the pre Ronan is not dead days. Now, doing things like keeping your brothers entertained on their fall break, solo, is hard fucking work. Don’t get me wrong, they are easy boys. And if you were here, I have no doubt we would be off doing things like going to the Pumpkin Patch, shopping for Halloween costumes, and having lots of adventures. You know what is right around the corner. Your most favorite holiday. Halloween. It used to be my favorite holiday, too. Now it just makes me extremely sad. Last year, I dressed up like a dead zombie because that is how I felt. This year, I’m not feeling like doing anything except burying myself in a big hole in our backyard. I have not carved pumpkins with your brothers yet, or gotten their Halloween costumes. We have been talking about what they want to be. Of course I always wonder what you would have been. In my mind, you would have been a different Star Wars character every year for the rest of your life. I don’t think you would have grown out of your Star Wars phase just quite yet.

Today, Liam and Quinn’s fall break consisted of therapy. It was Liam’s day to be with Dr. Rachel. It’s been a while since he has seen her. I went in and talked to her before hand. I told her that I have been having to talk about your last days a lot, with everything that I have been doing. I told her I was worried because we had not really talked about it in depth with your brothers. We agreed that she would dig deep today, without pushing Liam too much. I waited in the waiting room with Quinn. My mind was racing and of course my heart was breaking thinking of the conversation that was taking place in the next room. What a great way to spend fall break, huh. Liam came out after an hour, his little eyes all red. I got up and left him out in the waiting room with Quinn while I went to talk to Dr. Rachel about how the session went. I listened to her tell me how Liam talked very openly about the sadness he feels over losing you. How during the time when you were dying he told himself to be a good brother, to be brave, to be strong, and how he wanted to be somewhere else. He told Dr. Rachel he told you the same things. He cried a lot when talking about all of those things. She told me he has a higher emotional intelligence than most kids his age. How well he was able to verbalize everything that he was feeling. I wiped away my tears while listening to this. I felt like punching the wall and screaming, “WHY THE FUCK DID THIS HAVE TO HAPPEN?!! TO THE BEST BIG BROTHERS IN THE WORLD?!!!” I got up and told Dr. Rachel thank you. We decided that it was best for now to let Liam talk about these things in his safe space with Dr. Rachel. I asked Liam in the car if he wanted to talk about anything. He told me he did not, so I left it at that. I am just thankful that he is opening up to someone.

I picked up a friend of your brothers so we could have a play date. I took them over to The Village to play basketball, football and swim. I was sitting outside, under the shade of course with my dark sunglasses on because I have developed an allergy to the sun called, “I fucking hate you.” I was watching your brothers and their friend swim. I was trying not to get too sad that there were 3 boys in the pool and one of them wasn’t you. Just as I was sitting there, a little hummingbird came flying right up to my face. It stayed there for a few seconds. I smiled. I thought of you of course because little hummingbirds don’t happen often in my life, but when they do it is always when something really important or sad has happened and I need a little sign that you are around. 3 minutes later, my Twitter alert went off. Somebody had tweeted me that our friend, Super Ty had passed away. My stomach dropped to the floor. I sat there for a few minutes. I didn’t cry right away. I thought about the hummingbird and how that was your way of telling me you were going to take care of Ty now. Hot tears rolled down my cheeks as I watched your brothers laugh, splash and play. I sent your Sparkly a text about Ty because he knows how he was our roommate at Sloan. I told him that he had passed away and how cruel life was. I told him about the hummingbird too and how I knew it was a sign from you and how you would now watch over Ty forever. He told me that he knew that you would, too. My tears didn’t stop for a few minutes. I’m so sorry to Ty’s mama, daddy, little brother and to all who knew and loved him. I’m so sorry to Ty. Will this cruel world ever get better, Ronan? How many kids is it going to take, before people start paying attention to the point where everyone finally says, enough is enough? When is this sick cycle of kids dying over and over and over from cancer going to end? When are people going to stop looking away because it can’t happen to their child, right? I know I am making a lot of headway with everything we are doing, but some days I feel like how long is this going to fucking take? And what is it going to take for everyone to wake up and join in this fight with me? Am I going to have to organize a freaking protest or something? When will our government really step up to the plate and what can I do to make this happen? Somebody get me on the phone with Obama. Seriously. Too many parents are losing kids. Too many kids that are still here, will suffer for the rest of their lives. They deserve to stop being overlooked. They deserve better treatments and options. I don’t want another mom to have to sit down with their other children and let them look at the ashes of their dead brothers body. I am beyond heartbroken and if things continue to stay this way, I just don’t know what I will do. Really, how hard do I have to fight? I feel as though it is all I am doing, 24 hours a day. Will things ever get better? If my post seems hopeless tonight, it’s just because I am so very sad over Ty, Ronan. I hope you two are both playing together in your super hero capes. Take good care of him sweet boy. It shouldn’t be this way.

I’m going to end this here. Your brothers had a good day. I tried my best but as always I carry so much sadness around in everything I do. I miss you so much. G’nite Ro baby. Sweet dreams. I love you to the moon and back. I hope you are safe.

xoxo

P.S. Hey Cancer. Fuck you.

Who says you can’t buy love???

Apparently not America. But I do. Especially when kids die from cancer. And there is a Leukemia Drug shortage for our kids out there, who are fighting cancer. Please hold while I go kiss the Urn of my baby boy. Pretty sure some red roses and some diamonds won’t bring him back.

I’ll say it again. Valentine’s Day is for suckers, MOTHER FUCKERS!!!!!!!!! Way to take away from what is really important in this world. Like loving harder than ever before, every single day. How about using the money, spent on Valentine’s Day and finding a cure for childhood cancer instead? How about saving some kids? Sounds like a no brainer to me.

Valentine’s Day spending second only to Christmas

By Andra Bryan Stefanoninews@joplinglobe.com

Who says you can’t buy love?

For Valentine’s Day, Americans will spend an average of $126.03 per person on romance, up 8.5 percent from the 2011 average, according to the National Retail Federation. That’s the largest increase in 10 years. Valentine’s Day is second only to Christmas for consumer spending.

Area businesses, including florists and restaurants, are forecasting big spending this year. Sales are up at the Candy House, with locations in Joplin, Springfield and Redings Mill, and co-owner Pat Hicklin said she is “really hopeful that the recession is lifting.”

“Businesses like ours tend to be a real good gauge of the economy,” she said Monday.

On Monday, the Candy House shipped 600 dozen hand-dipped chocolate strawberries overnight to fill Internet orders. To keep up with demand, Hicklin said, employees began dipping strawberries at 3 a.m. Monday, and they will dip 400 dozen today for walk-in orders on Valentine’s Day.

“It’s wonderful,” said Hicklin, who with her husband, Terry, purchased the longtime candy shop and factory in 1999. “We don’t know what to attribute it to, whether the recession is getting better, or some people have told me they are tired of holding back. They are finally going to buy what they want to buy, hoping for better days.”

Valentine’s Day spending this year is expected to reach $17.6 billion, according to the National Retail Federation. Of that, $4.1 billion will be shelled out for jewelry, $3.5 billion on an evening out, $1.8 billion on flowers and $1.5 billion on candy. Romantic couples also are spending when it comes to Valentine’s Day dinner dates — an average of $146.52, according to restaurant ratings guide Zagat, compared with about $70 for a typical meal for two.

Jeremy Shuey, manager of the Red Onion Cafe in Joplin, said that holds true at his restaurant, which has been booked for reservations on Valentine’s Day for a month. It is one of the restaurant’s biggest nights of the year.

“It continues to be a night couples like to spend time together; it seems like they really want to treat themselves,” Shuey said Monday. “They tend to order fancier menu items, spend more per couple, order a bottle of wine, order high-end steaks.”

Cindy and Elie Riachi splurged on a special Valentine’s Day treat for their children, Daniel and Andrew, a few days early. They spent about $50 on Saturday — a splurge, Cindy Riachi said, as the family doesn’t eat out much.

“I like having the kids do special events with us, as that is why I had them, to spend time with them,” she said.

The National Retail Federation also found that consumers will spend an average of $25.25 on their children, parents or other family members. That’s right in line with what Riachi spent at Target on two Disney movies to give as Valentine’s Day gifts to her boys.

At Dillons Floral in Pittsburg, Kan., florist Carol Hornback reported that six drivers were on the roster Monday, and eight to 10 drivers were scheduled for today.

“Normally we have one or two,” she said during a short break between fielding requests from a line of customers. Florists at Dillons arrived at work an hour earlier than usual on Monday to keep up with demand, and they will arrive two hours early today.

The phones at some other floral shops went unanswered throughout the day Monday — an indication of how busy they were preparing for Valentine’s Day.

A dozen red roses usually cost about $60, according to the Society of American Florists, but on Valentine’s Day most people will pay about $80, the trade group said.

“Here, men are spending anywhere from $25 to $100, or sometimes more, and the majority of orders are roses,” Hornback said.

According to the National Retail Federation survey, men outspend women on the holiday by almost double, shelling out an average of about $169 versus about $86 for women. But they tend to do so at the last minute, making it hard for jeweler Chad Comeau, who owns stores in Pittsburg and Joplin, to gauge sales so far this year.

“We’ve had several buyers in today,” he said Monday. “But in this business, men are the buyers, and they tend to wait until the last minute. Guys are extremely last-minute shoppers.”

7 Months but who’s counting? I am. I always will be.

Ronan. I wrote to you. On your 7 month day. I wrote to you around 2:30 a.m. May 9th was just 7 months ago. Feels like 7 years. I couldn’t sleep at all that night. I ended up making your daddy give me something to help me sleep. The screaming in my head wouldn’t stop. It stopped and I fell asleep. I don’t know where everything I wrote to you went , as it is not here anymore. It’s probably best that way. I’m sure what I had written down, wasn’t pretty. I’m not sure where the week went. It was busy. Non-stop. I’ve been a very busy mama. I had a meeting at T-Gen. They were kind enough to meet with me so I could get an idea about what it is, they are doing in regards to Neuroblastoma. I wanted to see what they are using the 4 million dollars that Dell has given them for. They are working with Dr. Giselle Sholler, whom you know I am very interested in. I have been reading everything about her that I can possibly find. She is on to something big. I look forward to the day I can meet her. I look forward to the day that she can retire, because she is going find a cure for this nasty disease. I sat in a room full of these people from T-Gen. I had to tell them all, a bit about your story. I’ve never really talked about you, in front of a room full of strangers, Ro. I much prefer hiding behind my computer. Glasses on. Hair up. No make-up. Music blaring. Did you see me? The way I was only able to give them the generic basics about what happened to you? The very business like story. I had on my best business like boots. My best business like jacket. My best business like face. Game face on. Because I knew if I said what I really wanted to say, that I would have ended up under the table, sobbing like a baby. How do you tell a room full of people, what you really want to say? How do you tell them the way the love of your life, was ripped out of your arms and how hard you fought to help them beat this disease? How you fought with everything in your entire body, only to fail. So clearly, I failed as a mother because I promised I’d save you, and I didn’t. How do you tell them the way you watched your child die, will haunt you for the rest of your life. So much so that most days you walk around feeling as if all the air has been sucked out of you. How you are now filled with such guilt and shame because you are certain you chose the wrong path for your child. Because if the right one had been chosen, you would still be here. Death would not have been the outcome, right? I know what you are saying. That this is not the case. Because if there were ever 2 parents, who knew this disease inside and out…. it was us. If there were ever two parents, who tried their hardest…. it was us. If there were ever two parents, who loved a little boy the most…. it was us. But it was not good enough Ronan. We failed. I hope I don’t always believe this, but the grief thing is still blinding me and beating me to a pulp. So much so that I have bruises all over my body and I have no idea where they have come from. The funny thing is, these bruises appear and I don’t even feel them so I don’t notice them until I look down and I see a huge black and blue mark on my leg. Or my arm. I just assume I don’t feel them, because I don’t feel much of anything anymore.

So, the meeting at T-Gen I took your Mr. Sparkly Eyes with me. I am so thankful he went as he has a way of knowing how to put my thoughts into words, without me having to say anything at all. Because he was there, though all of this. He watched the way this played out. He saw your smiles, listened to your laughs, watched my tears, listened to my screams, at sat back, helplessly, when there was nothing left to do. His insider’s/outsider’s perspective on this was useful as well. I get that I am the emotional mommy who just lost her son. He was able to play the role of the level-headed, logical one who loved you as well…. but not in the way that a mother loves her son. As soon as we left T-Gen I got the talk. The one that he is so good at giving. The one that went something like, “This is it. This is what you were meant to do. I don’t care how hard this gets, I don’t care how much you want to give up. You cannot. Do you hear me? You cannot. This is it. You are going to change this so that one day, when I am gone, you can look up there and give me a little wave and tell me you did it.” I couldn’t even reply to that one. I only choked back my tears and said something like, “Where are you going,??” Which in turn ended up in the,”I’m not going to live forever talk.” The one I choose to ignore, every time it comes up.

From T-Gen, I went home. Wiped out from the day. I had a board meeting to go to though so I had to man up as they say. I was dreading it. Our last one was a disaster. It was so painful and everyone was on edge. I expected this one to be the same way. It wasn’t. It was lovely, but long. 3 hours long. It ran really smoothly and all of our concerns were addressed but in the most loving way possible. After we wrapped things up, I looked around the room and felt a wave of warmth wash over me. Like something very big and magical was about to happen. All because of the women that I was surrounded with whom were all there for one reason. Because of you. Because they believe in you and they know they are going to be a part of something so beautiful and true. Something different and unique. Something that is going to change their lives…. for the better. They believe in you. They believe in me. That is more than I could ever ask for, Ro. I felt you all around us that entire night. Thank you for that, baby. I really needed that in the worst way possible.

I spent that next day, feeling pretty beat. I think the whole not sleeping thing, the T-Gen meeting, the board meeting, and not seeing Dr. Jo, caught up to me. Thursday came and I tried my very best to suck it up and carry on with the world. Mandy Bee spent the morning with me, doing distracting things. I was out with her for a couple of hours. I knew I was going to crack. I looked at her and told her that I needed to go home, as I was feeling like I couldn’t handle much more of the real world for the day. She took me home, helped me with a few things around the house and played the role of the best jewish mother that I have come to love, so much. She told me she could stay if I needed her to. I gave her one of my best bullshit smiles as she calls them and told her it was o.k. I needed the quiet time. I knew what was about to happen and I just had to give into it. She left. I crawled into bed and sobbed the rest of the day. Thankfully, Liam and Quinn stayed the night with Mimi and Papa so I didn’t have to put on a show for anyone. I got up to run to an appointment. I came back home. Your daddy and I were supposed to go to a concert. He came home. He saw my puffy eyes. I told him, I couldn’t go. I told him to please go without me, to have fun with his friends. I could tell he needed to blow off some steam. I told him I just wanted to stay in bed and be sad. I don’t do that often enough. I was in no mood to go out in public and pretend. Your daddy went. I stayed home. I cried for 15 hours that day and night. I cried for you until I could take no more. That’s when I had to take the little magic go to sleep pill. I thought all of that crying would have knocked me out. It didn’t. The screaming in my head and the silence of the house were too much to take. I passed out. I woke up feeling o.k. 7 months had arrived. I just had to make it through the day.

I had a busy busy busy Friday. I saw Dr. Jo. It was good. It’s always good. I had a lunch to go to after I left her. A lunch that turned your very sad 7 month day, into a very sweet day instead. I met with a new friend. I say new friend, because I have a feeling about this new person. You know that feeling when you meet somebody and you just kind of go, oh hello person I feel like I’ve known my entire life, but I’m just meeting for the first time, today. That is how I felt when I met this person. Her name is Kristi. Kristi Michaels. She knows that Rock Star person we talked about in a few posts before this one. She knows him, very, very well. She knows him, better than anyone. Hellos were said. Hugs were given. We hopped in her car where we sat for a good 20 minutes before leaving for lunch. We sat and talked. I guess we more cried, than talked. I was a mess. She was a mess. We sat and she listened as I told her about you and this sad story that nobody wants to hear about. Because childhood cancer is just too sad so people would rather ignore it because if you ignore it, surly it will go away, right Ro? Bullshit. Somewhere in the middle of all the tears, Kristi said Bret wanted my permission to do something in honor of you. He wanted to ask my permission to have a room at Barrows Medical Center, where he was treated for his brain aneurysm, named after you. Built for you. With your little face, smiling down at the kids below. A play place for the kids to go. A safe and happy place full of all things wild and free. Because you are that beautiful, Ronan, that nobody wants to forget your face. Kristi and Bret and going to make sure that you don’t get lost in all of this. They want to help make sure to help spread the word in any way possible, any way I need or want. This is just the beginning of great things to come. They know that it is not acceptable for kids to be dying of cancer due to the lack of funding and awareness. You should not have died. You just should not have, Ronan. This was not the way this was supposed to turn out. But for fucks sake, it did. And I swear to you, I’m not going to stop telling your story until people start to listen. And things start to change. Kristi was crying when she told me about this. She was also crying when she told me that Bret wore your bracelet in his Pet Smart campaign. And also, in their Christmas Card picture which she gave me while we sat in the car. I opened up their Christmas Card. This was after my little rant about Fuck the Holidays and Fuck Holiday Cards. I smiled when I looked at the faces on the card. I smiled because it was at that exact moment, that I knew that this family, staring back at me, was truer than true. It wasn’t a FAKE or PHONY holiday card, Ro! It was them. It was who they are. It was everything Rock and Roll and Love combined. Their card, told their story and no words were needed. Music. Tattoos. Dogs. Black. Dark. Edgy. But soft too. Smiles. And the best thing of all…. one of their little girls, is wearing a Santa Hat with little Devil Horns sticking out of the top. The exact kind of Santa Hat, I would have put you in Ronan. I smiled at this Christmas Card. It made my day.

We left for lunch after we composed ourselves. It was the kind of lunch where you find out you have a lot of things in common. Small town girls. Big city dreams, but small town girls at heart, forever. A love for nature. A belief in true love. How you both think, being a mom is the best thing ever. How you both believe in raising your kids in an open and honest world. Sometimes maybe a little too honest which others judge. You both tell those people, to fuck off. Because at the end of the day, you both know that as long as you are true to yourself and your family, nothing else matters. Because fucked up things happen everyday like kids dying. And you never know when everything could change in an instant. So you’d better make the best of this time by being true to where your heart leads you. Especially if it is wild and free. The best adventures are wild and free…. right baby? I know you knew this from the second you were born and it was the way you lived you life every single day. I cannot even begin to imagine the things you would have done in this world, Ronan….. had you been given the chance. At one point during lunch, my passion for you took over and I was blabbing about how I much I believe in you and how I refuse to do this any other way than the way that my heart is telling me to. The way, you are telling me to. I don’t remember exactly what I was saying, but Kristi looked at me and goes, “You remind me, so much of Bret.” This caught me off guard but in the best way possible. She then went on to tell me how if Bret would have listened to all the people in his life, telling him he was going nowhere, how he couldn’t sing, etc….. that he would have ended up a truck driver. He was told no, so many times. He didn’t listen. He kept going. He chased his dreams. He broke downs all the doors that were slammed in his face. He ignored all of the asshole people who for some sick and twisted reason, thrive on keeping others down. He is proof that if you believe in something enough, anything is possible. Anything. Even a cure for this fucking disease that killed you. A CURE. I said it. Dream big or go the fuck home.

After lunch, the 7 months since you left me lunch that actually turned out to be a beautiful day….. thank you, Kristi<3<3 I ran back to Dr. Jo’s. We had another little session with some of our lovelies, Ronan. I think they have been having a hard time…. trying so hard to understand all of this. They both just want to understand so badly what it is that I am going through…… and for as hard as they have been trying, I think they feel lost. I felt like Dr. Jo could make a little sense of this, more so than I can. I’m too caught up in it all. She is the expert not only experience, but education as well. Dr. Jo was sweet enough to meet with all of us, so she could listen to their concerns and she did her best to let them into the world that I now, live in. I think it was helpful. I hope it was to them. It was the least I could do. I know I say I want to be alone and push everyone away. Sometimes that is true. But some days it is not. I don’t want to lose everybody in this process. I want to make them understand even if it is just a tiny bit, without having to go through something like this. I don’t know if that is even possible, but I feel better knowing that I am trying when all I want to do is give up and not care. I care. I know I do. I’m too loving of a person, not to.

I took Mandy Bee barefoot hiking today with me. Because we are badass. I didn’t hike up the mountain. I ran. Barefoot. Take that, mother fucker cancer. I’d like to do it again, tomorrow. I didn’t feel a thing. Dr. Jo is leaving tonight for a week to a silent mediation retreat. I have been panicking. She sent me a text before she left. It said for me to please take good care of myself while she is gone. How she needs me as she can’t change this world, on her own. She’s not going to have to. You will help her, my bravest little boy. I know this.

Has this turned into a novel tonight or what? I’m sorry. That’s what I get for not keeping up with you. I hate the nights that I don’t write but my head has been a mess. I have much more to say, little one but I need to get some shut-eye. I’m feeling tired, which doesn’t happen naturally very often anymore. I miss you. I love you. I hope you are safe. I’ll forever be sorry.

G’nite baby doll.

xoxo

The Guest House
by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

For you, I swear.

Ronan. It’s days like today, that scare the shit out of me…. because they do not. I don’t have ANYTHING I’m scared of anymore. I have things I worry about, of course. Obsessively. But fear does not register anymore. It’s weird to live so freely, yet so contained. My mind is going a million miles an hour today, with no end in sight. I feel like I’m on that carnival ride, the Tilt a Whirl, and I cannot get off. Life is just spinning, spinning, spinning…. everything is out of control, moving so quickly, and never slowing down or stopping when it should be. You died. The world should have ended too. It would have made sense to me, if it did. The pain I feel from losing you is so great, that I feel as if everyone else should be feeling it too. I know there are people, who are feeling a great deal of sadness from losing you. People you didn’t even know. People who you did know. Like your Godmama, Tricia Boo. Whom I sat with and had frozen yogurt with. I sat in the dark with her and listened to her tell me how she went out on Friday night because she is young, gorgeous, single, and that is exactly what she SHOULD be doing. She sat and cried to me and told me how guilty she felt about going on, about living life, because she never wants me to think for a second that she is not thinking of you, how unfair this all is, and how fucked up everything turned out. She sat there and tried to justify the happiness that she should be feeling, but she just is not because she is so jaded by this world. It hurt me to hear her say these things because all I want for her is to live her life, without having to worry that I think she is being disrespectful. I took some time to sit quietly with what she was saying to me and I finally just looked at her and told her I basically never wanted to hear those words, come out of her mouth again. That I never want her to worry that she could be offending me or hurting me, because she could not. And if she ever did, I would let her know. I told her how I know how much she loves you and she does not need to prove anything to me. Ever. I told her I am aware of the friends in our lives, who your death has affected so deeply. How by because of what we have gone through, their lives have changed, even in the smallest way. I notice it. I am aware of it. I am thankful for it. Not thankful for your death of course, but thankful for the way I am watching all of my little flowers bloom around me, because of the love they have for you. For us. I don’t need any of my little flowers worrying about being happy or having a great life. They were all meant to, Ro. They were meant to because you were part of their worlds and you affected them in such a way, that they will become more beautiful, because of you. What a gift you have given all of us.

So to all of my Tricia Boo’s, my Little M’s, my Susie’s, my Macy’s….. stop it. Stop apologizing for things that you do not need to apologize for. You all have proven yourselves more than I could have ever asked for. My Macy… I’ve been meaning to tell you to stop apologizing for not calling me on the 4 months of Ronan’s death. He loved you so much. That in itself means you are my sister forever. Nothing you do or forget to do, will ever change the way I feel for you. I expect you all to live your lives, just the way you are. As being the best versions of yourselves and being happy and thankful, because you know what it truly means to have been loved by Ronan. If there ever comes a time, that I am hurt or mad, and that day may come….. And it could be over somethings as silly as the time that I yelled at Tricia because I said she abandoned me, and then she and Macy ended up tracking me down on Camelback Mountain; because they were so upset over my words. What happened then? Tricia grabbed me, we cried, hugged, and apologized. But we were honest with each other and it only made us closer. You know what else happened? Macy flashed everyone she passed with the skirt she was wearing as she tried to hike up the mountain, in sandals. It made me laugh and love those two more than I ever thought possible. I know, Ro, who is true. So do you. That is the reason our lives are filled with the most beautiful people on the face of the planet. And I’m not exaggerating. If you are in our lives, there is a reason why…. so stop worrying, second guessing, thinking you have offended me or hurt my feelings. I promise you, I will let you know.

I fell asleep late last night. Once again, the thought of falling asleep without having you to kiss goodnight, is worse than any nightmare that I could ever have. I fell asleep but did the usual tossing and turning. I remember a bit of my dreams, but not much. I remember it had to do with the locket I have, that I put some of your ashes in. Somebody, and I cannot remember who, took my locket and threw it into a fire. I remember screaming hysterically and thinking that I was burning you all over again and you were going to be able to feel it. It was an awful dream, Ro. I’m so sorry. I woke up today, so tired from my restless night. I bounced out of bed anyway. I had a meeting to go to. A meeting that I’m not going to go into too much detail about because it is personal. And I don’t know if this person is o.k. with me blabbing about the things we discussed today. I know how to tip toe around things when I need to, as I don’t want to scare people off. I know I walk a fine line with the responsibility that comes along with this blog, but for as much as I am all about honesty….I do want to be respectful of others. Let’s just say, I met with a mom today. An amazing mom who knows what it is like to walk in my shoes. She took the time to meet with me, listen to me, hold my hand, to cry with me; but she also took the time to tell me this is livable. Her marriage survived. She still has her other kids, who have turned out to be amazing kids. She told me how she knows what the lowest of the lows are, but when the highs come along, they are unbelievable. She didn’t sugar coat a thing, which you know I love. I love to meet other people who are open and honest; it makes my heart happy. It’s funny throughout all of this, the people I am meeting. The people whom I feel like I’ve known my whole life, even though I have not. It was so easy to feel a connection with this mom today, because of the fucked up club we are in together. She is a firecracker, like me. She is a fighter, like me. She is ready to go to War. She is willing to do whatever it takes to help me get this message across. She is ready for the Sea of Gold, that is going to come. I know this is going to take some time, but it is coming. I will stop at nothing to make sure of this. And I love all of you, for being on board as well. Thank you.

After my meeting, I came home and went to meet Inferno Fuckwad Bob, at Camelback Mountain. Man, he was messing with my head today. I climbed that mountain, in the heat of the day, while dealing with him, screaming in my head. I have now convinced myself that everyone I know, is either sick, dying or leaving me. Ronan, you had to leave me…. so who is next? This is what Inferno Fuckwad Bob, is trying to convince me of. He’s doing a pretty good job because I spent a majority of the day, screaming and crying. I ran down Camelback at an insane speed. I fell hard, didn’t feel an ounce of pain, got back up and screamed to the world, “This is the best you can do!!! FUCK YOU!!!!!!!” I fell. Just like we all do sometimes do in life, all the time. I made a choice today. I could have cried out in pain and carefully continued down the mountain, watching my every step, tending to my bloody hands, bruised ass, and jacked up ankle; but I didn’t. I got back up, laughed, screamed, had someone ask me if I was alright, said “Yes, thank you,” and I ran my ass the rest of the way down to the bottom. Fuck you, Cancer. I hate you so much, that you make me stronger than I ever knew I was capable of being. I remember driving in the car, sobbing, and screaming out loud to you how sorry I was. I swore on my life, the life that I don’t want anymore, that I would not stop advocating for Childhood Cancer until people start to become aware and a major shift comes. I swore that to you today, out loud and I will not let you down, Ro. I don’t care if this does not happen until I am on my death bed, at 100 years old. It’s going to fucking happen. I have to take this anger I feel for losing you and turn it into something good. I HAVE TO, Ro. You were so gorgeous Ronan, that I know you will end up making this disease, which is so dark and ugly, into something beautiful. Something that people will no longer ignore. I know we will make this happen, together. Just you and me, Ro. Forever.

I love you little man. I’ve got to pick up your brothers soon from the airport. I miss you a million times a day. I love you more than you will ever know. I hope you are safe. I hope you were never scared. I’m sorry I couldn’t save you. I’m so, so sorry, Baby Doll.

xoxo

Babble.com

I’m not sure who nominated me for this, but I wanted to take a second to say thank you. I’m currently in second place  and I am so honored that some stranger, took the time to nominate me. One of the things we are working on is figuring out in which direction we want to donate the money raised for Ronan’s Foundation. I know we want to split it up, with most of the money going towards research and Woody and I currently have a couple of doctors in mind, who are passionate about Neuroblastoma, that we want to talk to. We don’t want to raise a little money for research, but A LOT. We are determined to help find a CURE, but we need to be absolutely sure in the Doctor/Facility that we will help. This takes time, so thank you all for being so patient.

We want do other things with the money as well, such as support our local hospital, Phoenix Children’s Hospital. Support local Foundations such as the MISS Organization, as Dr. Joanne, is currently helping to save my life. NO JOKE.

We would also like to help in assisting a family who is currently new to this awful disease and are trying to navigate their way through it. I met with a mom last week and I didn’t blog about it because it was so raw to me. I wanted to take some time to sit back and absorb some things. First of all, the fact that this woman had the courage to reach out to me, speaks volumes in itself. I told her how brave she was as we all know that Ronan’s story did not have the happy ending that we had hoped for.

I was so nervous about meeting her and she was nervous about meeting me. She even texted me the day before to say that it was o.k. if I had changed my mind. I told her no way, that I was in this for the long haul. It was hard meeting her, but it also felt so right as I know this is a big part of what I am supposed to be doing. I held her hand. She held mine. We both cried. We both cussed. We both talked about HOPE. A word that I am not yet giving up on.

I have decided that if I win this contest, which would be 5,000 dollars; I am going to take that money and donate it to this family. Another really good family who in no way, shape or form, deserve to have their 2-year-old, diagnosed with cancer. They are a lovely family, a hard-working family, a family  who has now had their lives turned upside down by this monster. If I can take some of the pressure off of them, than that is what I am going to do. I told this mom, I will do whatever she needs, even if she just needs a coffee from Starbucks… I’m her girl. I told her to utilize me, because that is what I’m here for. I’ve walked this road and I know how lonely and scary it is. I want to help others and something about this mom and her little boy, tugged at my heart. I have not told this mom yet, but once I do… I will ask her permission to share her sweet little boy with you all. He is a fighter, like Ro. She just emailed me today to tell me that all of a sudden her little boy has taken a huge interest in Star Wars. And when they were driving yesterday, he asked her to turn down the music. She did and he told her he loved her to the moon and back; something they have never really said in their family. She told me she felt like Ronan was right by her little boys side, helping him fight. I believe this. Truly.

So, go and VOTE. How easy is that? And spread the word and get EVERYONE you know to VOTE as well. And screw your friends who think you’re annoying for not shutting up about this because I know they are out there. Your vote is going to help a family; they are not. And you know what else?? Even if I don’t win, I’m still going to donate the money. They are worthy of it. Ronan told me so.

THANK YOU MY LOVELIES!!!!!

http://mom.babble.com/mom/mominations/mominees/charity/maya-thompson

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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New obsession. Inferno Hikes. My physical Hell.

Ronan. The Sunday Blues. I hate Sundays. Always have. I woke up in an awful mood due to the dreams I had all night long. They were long, intense, and I was mad at everyone in them. I fought with your daddy in my dreams. Quinn and all of your cousins were smoking cigarettes in front of me. I was crying, screaming, and yelling. Everyone in my dream, knew you were dead and it was all they talked about. Is it too much to ask for a little peace in my life? Apparently, yes. To say I woke up on the wrong side of the bed, is an understatement. I woke up, vividly recalling what I had just dreamt about; and then I remembered that I was really waking up to you not being here. I walked around in a zombie state of mind for most of the day.

Hi baby. I started that yesterday, but didn’t finish due to trying to go to sleep. I passed out around 10, but tossed and turned all night long. My dreaming is out of control. I could be sick just thinking about it. I saw you in my dreams last night. Yes, indeed I did. I wish I could tell you it was amazing, but it was awful. I had a dream that I was holding you. You were still alive, but you were being cremated in my arms. Your skin was burning off and it was so hot, that I could feel it. I was supposed to just wait it out and watch you burn. I woke up, barely being able to breathe. I got up, walked around the house, went into your brothers’ room, and tried to go back to sleep in there. I did, but didn’t. I slept for a couple of hours and got up early to start my day. I was so tired of trying to sleep so I just aborted mission. I got up, showered, made your brothers breakfast, got them ready, got myself ready, made myself a list for the day of things to do and headed out to take your brothers to school.

I filled my day with errands. I went over to Gay’s house to give her a hug. I have not seen her since your services. I miss her and her little guys so much. So do Liam and Quinn. We are planning a play date with them tomorrow. It will be so bittersweet without you. After I left Gay’s, I finished up the things on my list. I came home, threw on my workout clothes, and decided to do hike at 1:00 in the afternoon. The temperature on my car read 114. Screw it. I’ve hiked the mountain everyday for a week now. Tricia hiked with me Saturday and Sunday. We are OBSESSED. Inferno hiking is our new Hot Yoga. As I was getting ready to head up the mountain, I decided I’d better tell someone where I was. I texted Trish and told her if she didn’t hear from me, it was because I had died; hiking. I made sure she knew where I was in case I didn’t make it back down. I had a moment of hesitation before I started. An empty mountain, the thought of rattlesnakes, the heat, and god knows what else; was enough for me to think twice about braving it today. But then I thought of you and everything you went through in your little life. All the pain and suffering. My fear subsided and I ran, as fast as I could for 35 minutes, up, up and up. I got to the top, started to dry heave, and threw up the only thing I had in my stomach the entire day which was coffee and water. No biggie. I took about 20 minutes to feel the sun burn my skin and I did my talking to you. I can’t remember if I cried or not as I was in a daze. I headed back down and just as I was thinking in my head, that I must be really be crazy; because nobody else in their right mind would do what I had just done….. a man appeared. I thought I was hallucinating at first. I took out my headphones and watched the man who must have been about 75, with his walking stick, approach me. He was carrying a spray bottle mister full of water in his hands. I smiled and told him I couldn’t believe that he was hiking today as I thought I was the only crazy person on the mountain. He told me to take off my sunglasses so he could spray me down. I laughed and thanked him and he told me it would keep me cool for about 10 seconds. I told him that was better than nothing. I think that 75-year-old man, hiking today, was clearly an Angel. It was a little sign from you to let me know that no matter how alone I think I am, without you… that you will never be far from my side. I really needed that today, Ro. Thank you.

I picked up your brothers from school, came home and we did their homework. The rest of the night has been pretty low key. Everyone is tired from the heat of today. Tomorrow, I have a busy day full of therapy appointments. I’m seeing Sarah and Dr. Joanne. I am going to try to go to boot camp at 5….. so please let me get some sleep. I need the rest, emotionally, physically and mentally. I miss you so much. We all do. We spent last night all crying about you. Quinn was hysterical, sobbing so hard that he couldn’t even talk. Liam was crying in your bedroom with your door closed, playing with your Star Wars guys. I cried most of the night as your Daddy tried to take care of all of us; but he was just as sad. I just don’t know what to do with days like yesterday. I almost can’t handle them. We survived somehow. Quinn is watching your favorite movie, “Home Alone,” now. I really can’t handle that. The little boy in the movie is you to a tee as far as the way he acts. You used to quote this movie every other day as you loved it so much.  I so badly wish we would have went on a vacation, and left you at home alone. At least this movie has a happy ending. I don’t see how our life can possibly have a happy ending without you here.

I’m going to go now baby. I’m so tired I can hardly see straight. I love you to the moon and back and hope you are safe. I miss you so much. Sweet dreams, my “not spicy, little monkey.

xoxo

I would like to dream about these sparkly shoes tonight. Something crazy, gorgeous, and girly.

Everything’s not lost, but really it is

Ronan. You were everywhere today. I had to stop and catch my breath a few times just so I wouldn’t throw up. I am reminded of you in everything and everywhere. In the whole avocado that Quinn had for lunch. In the Mickey Mouse beach bag that Stacy carried her kids’ beach stuff in. In the Star Wars swim trunks that Mac had on today. Even as I watched your cousin, Jake, eat some Mandarin Oranges at dinner. I had to fight back the tears over all of those things today. You loved all of them so much. It’s so strange to see these things that have such little meaning to everyone else, but they mean everything to me. I don’t know how to deal with all of those little things because every time I see things like this, I just want to curl up and die.

I am not living. I am surviving. And it sucks. I still don’t understand why you were taken away from us so quickly. I think about this all the time. It kills me that everything changed so suddenly and how rapidly your disease progressed. I swear it happened over night. Your daddy and I fought so hard for you. We talked to the best doctors, researched everything we possibly could and it still was not enough. It all happened way too quickly and I’m still trying to make sense of something, even though I know I will probably never get an answer. I deserve one though and I am angry at the way the doctors just seem to want to sweep you under the rug, like you never existed. I want to hear from them that they are sorry. I want to them to look me in the eyes and see their pain because  they couldn’t save you. I want some sort of acknowledgement that you were here and they are sorry that they couldn’t save you. I know this won’t make you come back, but I want them to hurt the way I am hurting so that maybe they will work harder to save the life of the next child who is going through something like this. I know that these doctors work hard, but not fucking hard enough because you are gone. I want someone to blame, even though I know nobody deserves to carry the burden of this. This is the cause and effect of our insanely mad world. It is the only way to explain how such a thing can happen to a child or a teenager. Complete unfairness and insanity. There is no other answer.

I ran on the beach tonight and was so not feeling it. I pushed through for you though. I sat and watched a daddy pulling his little girl on a boogie board and then I watched as the mom came and swooped her up and off they went holding hands, running down the beach. I wonder if that mommy knows how lucky she is. I would have given anything to have been that mommy today, running down the beach and holding your hand. Instead, I get to watch somebody else doing it. It was another one of those outer body experiences that I seem to have all the time now. After I watched the mommy and little girl, I laid down and the sand and looked up at the sky and just cried. I didn’t want to finish my run, but you forced me to get back up and pound out the last 2 miles. The waves chased me a lot today and at one point I couldn’t run fast enough away from them. My sneakers ended up getting soaking wet. I thought of you and pretended that the waves were your little feet trying to run after me. I have to hold on to things like this; this imaginary life I have made up in my head just to get through the days without you.

I heard from, “The Stranger,” again tonight. Except now, I know her name. I liked hearing from her and a bit of her story. It took a lot for her to write her first email to me but I am so glad she had the courage to do so. Her words helped me last night when I was really needing it. She talked about how she struggled for nights to write that email and then to actually send it. After my day yesterday, her email could not have come at a more perfect time. I know that was you, Ro. Your little way of getting to me. Thank you for that.

Quinn and Liam have their cousins, Jake and Carter over for a sleepover tonight. All is quiet except for your big brother, Quinn is in bed with me watching Sports Center. I knew he would end up in here with me and not out in the living room with all the other boys. It has been so nice having your brothers spend time with their cousins. They have formed such a bond over such a short period of time and all the laughter and just watching them all be boys has made my heart a little happy. It is helping me to see your brothers laugh and smile despite the sadness that I know weighs heavy in their hearts. I’m watching them heal a little more one day at a time and I know a big part of this is the family that surrounds us. I am so thankful for that.

I’m so sad tonight, Ro. Your daddy is not here and when I talked to him on the phone I could hear how sad he was being at home all alone. Without us and without you. I don’t know what to do or to say except for to tell him I love him. I’m having a hard time talking to him about you yet because everything is too painful. When we do sit and talk about you we both just end up crying. I don’t think the crying is ever going to stop. I don’t think there are two parents who ever loved a little boy so much. I like to think that it is because of the love that your daddy and I have for each other which is why you were given to us. We love each other so much and you were such a gift. I just don’t know why you had to be taken away. And I don’t know how we are just supposed to go on because it does not seem possible to live our life without you. I’m clinging on to anything I possibly can, but it will never be enough and I honestly don’t know how I am going to survive this. This life hurts and this life is cruel.

But I am going to continue to fight through this because I know it is what you want. It is what your brothers deserve and your daddy too. But there is not a day that goes by that I wish the world would just swallow me whole. Every inch of my body hurts and misses you. That will stay with me for the rest of my life. I’ve somehow got to find a way to learn to live this new life without you. I promise I will try as long as you keep guiding me and giving me strength.

That is all for tonight my love. I hurt too much to write anymore. I love you to the moon and back my most beautiful boy. Sweet dreams.

P.S. Every song on Pandora tonight has reminded me of you. Are you the one making this little playlist for me, my sweet boy? Your gifts are all around. Everyday with you was the best day of my life. I love you, Ro baby.

xoxo