I wish I didn’t know what it was like to only be able to kiss your face through the pictures on my iPhone. I miss you. I hate this.

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Ronan. Every year since you left when Mr. Sparkly Eyes’ birthday rolls around, I always give him a card that I’ve made for him through my iPhoto with a picture of you on it. A few nights ago I was at my office working on my book, but I needed to take a little time out so I started to go through my pictures of you to make his card. It’s never an easy thing for me to do, but I feel like it would be important to you, so I carefully pick out a picture that reminds me of how happy you were while you were here on this earth. I usually just write really some simple words and I always sign it from the both of us. Ring, ring went my phone as I was doing this little project and I saw the word “Lover” popped up on my screen which is really Macy. Of course I picked up because I always do when she calls. She started chatting away about something and as I listened, I buried my head in my hands. I went to answer the question she had asked me, but she knew from the tone in my voice that something was wrong.

“Oh babe. What’s going on?”

“Nothing. Everything. I’m sitting here trying to make Mr. Sparkly Eyes’ birthday card and is it weird that I’m putting another picture of my dead kid on it like I do every year for him? I’m going through these pictures and I cannot believe he’s not here with me to give him this birthday card himself.” Insert more sobbing here.

I listened as Macy told me that it was not weird at all and we continued to chat for another half an hour or so until I stopped crying. She ended up making me laugh after she listened to my blabbing away and crying while she did her best to talk me through what it was that I was feeling at that moment. I didn’t finish the card that night, but ended up finishing it a few days ago instead. I have learned when something just isn’t feeling right, not to force it and I knew if I forced your card, it was going to be crap. I take my card making very seriously, especially when you are involved. I got the card in the mail the other day and of course, it is perfection and I know it will make him smile as I tell him the story behind that little picture of you and your happy face.

Things here are still really busy and there is not a lot of down time between Poppy and your brothers. I am trying my best to keep my head above water and have been making sure I get some form of exercise in almost everyday. Mostly it’s been consisting of hiking up Camelback Mountain a.k.a my church as they just opened back up the hard side (Echo Canyon) again. I have so much anger inside of me still and it seems the best place to take it out on is the mountain, otherwise I will just internalize it all and end up exploding one day. Sometimes I hike by myself, but I have also been going with Tricia again which has been really great. You know, going through what we went through with you was really hard on our friendship. I made some mistakes, had a lot of expectations, felt let down and at times, was really judgmental about some situations that I had no right to be judgmental about. I never meant to hurt her as everything I said was always just coming from a place of love, but I also know that place of love was a little harsh. She being your Godmother, had a really hard time with all of this and somehow we ended up getting off track a bit. Slowly we’ve started to fix some things and the beauty of this is we know that our friendship is always going to be here; even when it’s been a little quiet at times. We’ve had some really harsh talks, some really good talks, and we’ve both apologized as we know our friendship is worth saving. She is family and at the end of the day I know where her heart is and it has always been with you and it will always remain there. I didn’t go to her wedding which you know I am sad about, but it wasn’t for any reason other than it was in Mexico and I wasn’t willing to take Poppy with me and leaving her behind was not an option, either. I did give her something blue to tuck into her bouquet though which was a tiny piece of your blanket. It was hard for me to take the scissors and actually cut off a piece, but I needed something of you and us to be there with her. I wish it could have been the two of us there together and knowing the should have been’s of her special day will forever haunt me and make me sad; but the look of happiness on her face from the pictures I saw do take away some of that sting.

So, Poppy’s first birthday is right around the corner. April 8th to be exact. I don’t know how your baby sister is almost a year already as the time went by so fast. I’ve been trying to figure out what to do for her birthday, but the fact of the matter is I’m feeling overwhelmed about it. Do we just do something quiet at home or have a full on party? I keep going back to what would Poppy want us to do? In Poppy’s perfect world, I’ll bet she would want to just have a day with just a few people and about 100 dogs. She is dog OBSESSED! I told your daddy I’m starting a campaign called, “Poppy needs a puppy,” but he’s just not having it. Anytime she sees a dog, she starts barking and gets so excited that her little body just shakes and she usually ends up waving her arms so fast that she falls over. All day long she goes around our house, walking on her hands and feet, in a dog position and sticking out her tongue and panting like a dog. We don’t even own a dog so the fact that she is doing this from the memory of the dogs that she has seen, makes it even funnier. She is such a little character and loves to entertain us all of the time with her constant babbling, dancing to her favorite song which is “Get Lucky” by Daft Punk or any type of rap music. Shorty’s got game and seems to be developing quite the spicy little personality. I’ll get her birthday figured out soon, but something tells me it’s going to end up being very low key and sweet.

I’ve got to run little man. I’ll write more soon, but I have to get back to this book business. I miss you. I love you. I hope you are safe.

xoxo

P.F. Changs Marathon Phoenix, here we come!

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http://fundly.com/run-like-a-rockstar-p-f-chang-s-2014-rock-n-roll-arizona-marathon

I made a new friend and I know you are going to look after her.

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Ronan. Today is 28 months without you and it’s pouring down rain in AZ, naturally.  You always bring me the rain when I am the saddest. I was up on and off through the night.  Waiting for that 3:25 a.m. time when you left this world.  I felt like screaming and throwing fists everywhere until I looked over at your Poppy sister who was sound asleep beside me.  No screaming and crying fits allowed when a peaceful baby is sleeping beside you.  I sent an email to Sparkly instead and screamed and cried to him.  FUC.  I hate cancer.

Dr. Sholler is in town. I took her hiking up Camelback last night. Holy hell it was hard as I have not hiked Camelback since I was about 8 weeks pregnant with your sister. It felt good though and we ended up totally making it a danger day since it was dark as we were coming down. That Dr. Sholler is such a badass that she was fine with it.  We talked a lot about life, loss, this cancer world and how wrong it is.  I like spending time with her as not only a doctor, but on a personal level as well.  I’ve never met a doctor like her who just as passionate about her research, as she is the kids she is treating. She never forgets the faces behind this disease which is a big reason why I love her so much. She won’t ever forget your face and she never even got to treat you.  One of my biggest regrets in all of this is that, but as I am learning, regrets in life will get you nowhere.  It’s about moving forward and making the changes you can with the cards you are dealt. Even if it is the shittiest deck.

Our weekend was spent hanging around at home. Brianna and her girlfriend, Taylor who both just moved here to go to ASU, came over and stayed the night on Friday. Things like this that make me so happy, yet make me so sad, too. Your Brianna Boo, who loved you so much has finally moved here and we get to do such fun family things together, all while you are not here. I spent all Friday night and Saturday morning doing her laundry, your Daddy and I cooked her homemade meals, everyone went to your brothers basketball game, and I took the girls for mani/pedis, too. All while you are not anywhere to be found and I still have a hard time wrapping my head around this reality, our reality which I know is also the reality for so many others out there who are dealing with the loss of a child. It’s a reality that you never get to escape from or take a break from. It’s a reality that is a lot to carry around and the load never gets any lighter. But hey, thank you White House for saying NO to our little petition and thank you Empire State Building for also DENYING our application to light it up GOLD one day in September. So nice to know you will turn The Empire State Building Orange in honor of Nickelodeon on September 16th though. BARF.

Are you freaking kidding me?! This is an outrage and beyond insulting. Does anybody have any pull with the Empire State Building? Maybe if we all send in 5000 applications, they will listen. Here is the form if you so kindly, want to fill it out.

http://www.esbnyc.com/documents/ESB_LP_Questionnaire_FINAL.pdf

Today, I did my Skype interview for Emotional Mojo. I think it went well. I had a lot of fun doing it and one of the producers I’m working with, is awesome. I sent her a little email this morning, just to cover my bases. It went a little something like, “Hey CeCe! Can I cuss on air?” She replied back with something funny like “Noooooo! We are LIVE! If you cuss, you will be thrown into a black abyss and your message will not get out!” She told me to tape a sign to my computer that reminded me so cussing allowed so that is precisely what I did. Worked like a charm as no F bombs were dropped. They are going to check in with me every couple of weeks to see what it is that we are up to. I’m totally excited for this new little awareness outlet. I even rocked my red lipstick on air because we all know shit gets done when it’s a red lipstick kind of day. I’ll post a link when it goes up so you all can check it out. I hope I made you proud today, Ronan. I hope I make you proud everyday as making you proud is what I live to do.

It’s still pouring down here.  After a very productive pow wow lunch with your Poppy sister in tow, I’ve decided throughout this journey, adventure, or whatever you might call it, I am still learning some very hard lessons.  Lessons that are hard, lessons that are sad, lessons about how I need to be a little more protective of myself.  Lessons about how people at the end of the day, do not have my best interest at heart. I feel let down, but I realize I have to take the higher road with some things and just let them go. I have too much darkness in my life already, and I do not need to be dragged down more. As I was told today, “If people are taking away from this cause, and taking away from what you are doing, because of your DEAD child, those people do not need to be in your life. They have forgotten the true meaning behind this and are taking advantage of your situation. You have to just let all of this go, because at the end of the day, we are here because of your dead son and anybody that takes away from that, is not worthy of being a part of this story.” Wise words from a wise lovie whom I should have listened to a long time ago. I have enough weight to carry around with me and at the end of the day I have no more energy left to take on others issues.

It’s days like today that I am just so fucking over the petty once again, BULLSHIT. Your Sparkly called me a few months ago and left me a voicemail telling me about a little girl he had just met and said something like, “You are a hero, you helped to save her life.” I listened to him go on about how a little girl came into the hospital and as he was treating her, this little girl’s mother, got to talking to him. She mentioned my name and told your Sparkly thanks to me, her daughter may end up being o.k. Nela’s mom started reading my blog about two years ago. Nela’s story started off much like ours. It all started with an “off looking eye,” where the doctors told Nela’s mom it was just allergies and she was over reacting. Nela’s mom said thanks to us and our story, she pushed and trusted her mother’s intuition and insisted on an MRI. The MRI showed a mass behind Nela’s eye and it turned out, Nela did not just have allergies. She has been diagnosed with Rhabdomyosarcoma, but luckily, it has been caught early, at Stage 1. Nela’s mom and I have been cooresponding via email messages and just lately, through text messages. I’ve been trying to set aside some time to meet up with her and to meet Nela, but things around here have been beyond slammed. I was coming out of my friend Katie’s kids store the other day and loading Poppy into the car when I saw a mom from across the street, carrying a little girl and she didn’t have much hair. I, of course did a double take as I always do in these situations now. She looked at me and said, “Are you Maya?” I said that I was and she introduced herself and Nela to me. I was a little caught off guard, but in a happy way. I’ve been really wanting to meet this family for a while now. We chatted for a few minutes and I ended up saying, “What are you two up to now? Do you want to come over?” It was so spur of the moment but she had actually been trying to meet up with me on that day, anyway, so it worked out perfectly.

Our new friends came over for about 45 minutes. I watched as Nela ran all about our house. The little thing had so much energy and seemed so happy. I listened to her mom tell me their story as I held on to your Poppy sister. She kept telling me thank you over and over again, even though she said she knows how I don’t like to be told, thanks. I smiled and told her I was happy I could help and if they needed anything, to please let me know. I only teared up after I watched Nela’s mom plop a big, fat kiss on the top of her sweet baby girl’s head. It was at that moment, that my heart sunk a little bit. Moments like that are always bittersweet for me. I am so happy Nela is here and is going to be fine, but gosh, how I miss kissing that sweet little head of yours. And then my mind goes to where you are now, all ashes in an urn. No more bald head to kiss, no more blue eyes to look into, no more hands to hold because they are burnt to a crisp. Is that too morbid? It’s my reality, try living with that every single day. It’s a wonder I am still here.

After our friends left, it was breakdown city. I held your Poppy sister and cried and cried and cried. Your Sparkly ended up calling and I told him, as I was bawling, that I was having a sad day. “I’m sorry,” he said. I miss him, too. C’mon, you have survived sadder days, you are going to be o.k.” I told him I knew as I tried to pull myself together. It didn’t work. I let myself cry a lot for you the next couple of days. All while I continue to fight on and go non-stop because cancer doesn’t sleep so why should I?

Ronan. As you can see, I started this days ago. I am exhausted tonight and I finally had a great run with my friend, Katie, tonight to get some of this angry energy out. I am finally starting to feel like I can get back into a good running routine and I have missed it so much. Tomorrow, we shall inferno hike. Tonight, we sleep.

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

xoxo

 

Nela, you give me hope.

Nela, you give me hope.

I happen to like 3 a.m.

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Ronan. If I don’t write to you tonight, my head might explode. Today was one of those days where I cannot fall asleep because my head is spinning. There is so much going on here, that I can’t even see straight. What have I been doing? Running around like a chicken with its head cut off. September is right around the corner and we have so much going on and coming up that I don’t even know where to start, so I’m going to start somewhere completely random. Your brothers started school last week. Did I already tell you that in an earlier post? I cannot remember. They started the 4th grade. I can’t even believe that as the time has gone by so fast with those two. Of course, on their first day of school, I dropped them off and sat and watched them as they walked into school together, from my car. My heart broke into thousands of pieces not getting you to watch you walk into school with them. Would have it been kindergarten or first grade for you? Not sure, because of your almost summer birthday. If you would have survived cancer, I’ll bet we would have waited to start you in kindergarten until this year, so you would have been on the older side. I never thought I would be begging for the side effects of treatment from you cancer, but I would have given anything for those problems instead of having you just dead.

Just as I was sitting there, watching your brothers, I saw an old mom friend of mine, walking her little boy into school. An old ghost mommy friend as I like to call them, because at one time they existed, or did they? Sometimes I think they may have been just a figment of my imagination.

Crap. I know that lady, I thought to myself as I watched her walk her new kindergartener into the school. But I can’t place how I know her. Did I know her from my time with Liam and Quinn when they were at their preschool or did I know her from when you were there? Was she a Liam and Quinn kind of mommy friend or and Ronan kind of mommy friend? A ghostly past of my preschool mommy friends who went away after you got sick and died and who never looked back, or did I only know her during my blissfully happy days when I lived in happy land and childhood cancer did not exist. I run into those ghosts of my mommy past sometimes. Some days, I run screaming the other way. Some days, I smile and pretend like everything is o.k. or like my feelings are not hurt at all for the friendships I thought I had, but it turns out it was not as true as I had once thought in my mind. At the end of the day, I’m o.k. with it all though. The Fernanda’s, Stacy’s, Macy’s, and Mandy’s make everything more than o.k. in that department and I know, the one’s that stuck and fought for me and you… well, I am SO beyond lucky to have them as they rock my world every fucking day.

This week has been the kind of week where I am saying yes to everything that is thrown my way. Yes to the Gold Weekend in September.  Yes to the Spirithoods founder wanting to come out here to meet us and film a documentary next week.  Yes to helping Jim Fry drum up some press for his crazy kick ass bike ride through the Pyrenees. Yes to the interview where I will be featured once again in the Phoenix Magazines Movers and Shakers of the Valley. Yes to Liam and Quinn I am super mommy and can take on the world while helping you with your massive amounts of homework and whatever else you need. Yes to everything Poppy, of course. Yes to running on my very bummed out hurt knee that I obviously did something to over the summer, but I am choosing to ignore it because as I told Woody tonight, “If Ronan can go through cancer treatments, I can run on a fucking hurt knee.” Yes to everything while still making time to write this book which leaves me with little time to sleep or eat for that matter.

I can’t sleep and the whole eating thing is just getting in the way of what I am doing, so I’ve decided to take a break from that as well. I work best on fumes, anyway. Will I crack, will I break, will I have a massive super meltdown? I really hope not until after at least September. I’ve got too much to do as of now.

I’m also a little sad this week due to more than just your death. Remember that crazy ass stalker, Mandy Bee who swooped into my life like a Tasmanian devil? Who never claimed to be anything but a crazy stalker who just wanted to be my friend and who did things like drop off candy and leg warmers at my front door until I could not longer say no to becoming friends with her? What can I say, she learned my weaknesses early on. I mean candy AND leg warmers? I didn’t stand a chance. So, I let her into my life sometimes just a little and sometimes a lot. Sometimes I felt overwhelmed with amount of love she wanted to shower me with, so I would pull back a little. I often didn’t feel like I was worthy of the love she was wanting to give me.  Well, that crazy ass bitch moved right down the street and right when I was starting to become just as obsessed with her, as she is with me, she pulled the rug out from underneath me and is moving back to Canada. WTH, Ronan? That is not being a very good stalker, if you ask me. Mandy has become my side kick, my partner in crime and I’ve gotten really used to having her around. I am kind of heartbroken. I was texting about Mandy moving back to Canada with Stacy the other night. She said to me, “You know, all Mandy every wanted from you was your friendship. Nothing else.” I know this. It was never a friendship built on, I’ll scratch your back if you scratch mine. It was always, I’m going to scratch your back, even if you don’t let me, I’m going to do it anyway, while jumping out of a plane and skydiving with you. Mandy never had alternative motive. The day I met her, she announced she was fucking crazy and never pretended to be anything but that. I’ve gotten quite used to that crazy and I love it. So yeah, I’m a little more than sad about it but once you are sisters in this world, you are sister for life. I know she won’t ever be too far away and she will be back her often, which will help to soften the blow just a little. I’m still super sad about it though and I really think the whole situation, sucks balls.

Poppy, Poppy, Poppy. Somebody today asked me if we had started up “Mommy and Baby” classes yet. I looked dumbfounded and said, “Uhhhh, no. Unless you count taking her to every single foundation meeting with me as mommy and baby time.” Crap. Aren’t I supposed to be starting music classes with her or something like that to get her “socialized?” I’m sure that’s what I was up to when I had you, Liam and Quinn at this age. Maybe 4 months is a little early, but I’m sure I was doing it at around 6 months. Whatever. We do take music classes every day and they are called Taylor Swift is rad. We sing and dance to her songs and Poppy likes it best when I lull her to sleep with them. Those classes with just the two of us are better than anything I could ever pay for.

Alright, little man. This is all for tonight. I’ve got to try to turn my brain off. I miss you. I love you. I hope you are safe. G’nite, baby boy.

xoxo

I never fall asleep without thinking of you all

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I just want to take a minute on here and say thank you to all of you. After being away for the summer, I came home to piles and piles of mail, gifts for Poppy, checks for the foundation, and I even got glitter bombed after opening up a box. You all make me smile, laugh, and cry on a daily basis and although I can’t write each and every one of you thank you’s… please know that I am doing it here, and I say thank you to you all about 100 times a day in my head.

There are so many amazing things going on. If you have a second, please read about what the amazing Jim Fry is doing below.

http://www.firstgiving.com/fundraiser/jimfry/hauteroute

If you have the means, please donate to his fundraiser. Every little cent helps. If you don’t have the means, please spread the word for us. What Jim is doing is inspiring and so moving. Even with all of his determination, he knows it is nothing compared to what these kids go through and that is the most moving thing of all.

I feel a movement happening in the world. One that I am so touched by. I’ve literally received thousands and thousands of emails and letters from not only adults everywhere, but kids as well. Kids who I swear are going to change this world of pediatric cancer. They are holding fundraisers for Ronan, starting clubs at their schools, writing reports about the lack of awareness out there, doing amazing school projects about Ronan’s foundation, writing songs for him, doing their birthday parties and instead of gifts they are asking for donations instead, etc…. I live for the youth of America. I live for these kids who are going to grow up to do amazing things all because of a little boy they learned about because he will never get the chance.  And they know that is so wrong and how it could happen to anyone; even them. They aren’t scared and running the other way. They are being proactive about this very broken world and to me, the mother of a child who died from this… that means everything.

I got sent a little poem from a 13-year-old girl named Eugenia. She had a class assignment and it was to describe a room and explain how the objects in the room say things about the person living in it. She chose to do it about my bedroom. The poem is below.

The light on at night illuminates how she doesn’t sleep well thinking about how she feels it’s her fault

The athletic shoes next to the door jog the idea that she runs to clear her mind

The pictures of her son all over the room visualize how they were close and that she misses him like crazy

His little bald head in the photos discloses that his life was a hard one even though it was short

His toys on the floor play out his innocence; how he was taken too young at 3 years old

The boxes of tissues whisper about how she spends every day crying over him

The spot on her bed between her and her husband portrays that he would sleep in their bed

The urn on her night stand murmurs that they keep him close and never let him go

The necklace around her neck filled with some of his ashes witnesses how she needs to keep him close to survive

The letters of apologies opened and unopened spell out how many loved ones he had

The bracelets with his name on them tie up the fact that they are trying to spread the word of this horrible disease

The computer on the floor next to the bed reminds us how she needs her blog to express her emotions of grief and pain and tell his story 

The sonogram under the pillow wet with tears of joy and despair portraits how her new baby will be a girl; he always said he wanted a little sister

The deep sad look in her eyes sends the message to us that even on the happiest of days she will always be sad because her life is incomplete without him.

 For Maya and Ro. Always for Ro.

 

 

This 13-year-old gets me better than most adults. As I read the words above, the tears just poured to the floor. I thought it was so heartfelt and beautiful. I am so moved by this younger generation of kids and the way they are helping move these mountains. Thank you, E. Don’t let anyone every dull your sparkle;) You are making this world a better place.

I’ve got to run now and work on this book.

I hope you all are well and please know that I know, that I would not be where I am today, without you. Thank you for helping me to fight for my little boy so much so that his name will never get lost.

xx

 

“Hey guys, do you want me to move back in with you?”

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Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that.  About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.

It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things  you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.

We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.

On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.

“Hey, do you guys want me to move back in with you?! That would be so fun!”

They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.

“I really would. You guys are really awesome roommates.”

I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.

Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.

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

xoxo

Love our Lovies! Thank you for all you do for The Ronan Thompson Foundation!

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http://theronanthompsonfoundation.com/lovies

26 months without you

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Ronan. Today being 26 months without you, made me want to hide in my bed all day long. Your baby sister woke me up this morning at exactly 3:23 a.m., just minutes before you died, to eat. How does she already know everything at just 12 weeks old? How did she know at that moment, I needed a reminder that even though you are gone, you are still with us at all times? She is already so wise beyond her years.

I wanted to hide in bed all day and do nothing but sleep, sleep, sleep. I didn’t. I played with your brothers, instead. I went for a hike with your Papa Jim, your brothers, Poppy and Jady girl. I decorated some trees with your bracelets like I always do when I am hiking or out and about at places I know you would love to be with us.

I’m sorry I haven’t been writing to you on this blog. It makes me so sad that I have so much going on, that it seems to take away time from my quiet time, writing to you. Days are filled with me making sure your brothers are enjoying their summer as much as possible and bonding with your Poppy sister by making her smile and laugh as much as I can. The quiet time I have to myself which is really late at night after everyone is asleep has been spent working on this book. I have been having a war inside my head with myself about it. I swear I am my own worst enemy. I’m constantly doing the second guessing, the what if it’s not good enough, what if I don’t make him proud. A wise little editors words haunt my  head… “Remember, besides having kids, this is going to be the most permanent thing you do in life.” No pressure at all. The hardest part has been figuring out where to start, but I did it. It’s kind of like jumping off of a cliff. Sometimes you just have to close your eyes, follow your heart and take a huge leap of faith. I seem to be finding my words easily and so far, I have not had to go back to reference my blog at all. I’m sure there will come a point when I have to do that, but for now I seem to be doing just fine without having to reread my painful words. I know the inspiration I am finding all comes from you, so thank you once again, little man.

I’m going to keep this short and sweet tonight as I need to get some writing done for a few hours before my eyes fall too heavy to see the computer screen. I hate 26 months without you. I’m so sorry. I miss you so much that it makes me sick. I am doing my best even though I still have days where I just want to close my eyes and go to sleep for a very long time. I can’t do that to you though. We have too many things to get done here.

I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

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The days of hell are over, but never really end.

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Ronan. Your 6th birthday came and went. I kept wondering to myself, what kind of party we would have had? I asked your brothers, “Do you think Ronan would still like Star Wars if he were here?” They assured me that you would have so in my mind, for the 2nd year in a row, I threw you a Star Wars party. I clung to my imaginary party in my mind to get me through the birthday from hell that I had to have without you in real life that fell on Mother’s Day this year. Your brothers and daddy did their best at spoiling me so by telling me how much they loved me, what a great mom I am, how lucky they are to have me, etc… They tried to make the day about me as much as they could but I ended up saying, “This day isn’t about me, it’s Ronan’s day so let’s do everything Ronan would have wanted to do.” So we did. We went to a brunch where I ignored all the 6 year olds running about and focused only on your brothers and Poppy. We went swimming and I watched as your daddy and brothers went crazy going on the water slide that was at our hotel. I sat quietly in the shade and let my smiles, come from them. They played football in the grass and participated in a water balloon fight. After a few hours of that we went back to the room to rest and get ready for dinner. We ate at a really good mexican restaurant and we had plans to go and see Iron Man 3 (which you would have totally wanted to do) but your sister’s breastfeeding got in the way of our making the movie on time so we ended up just coming back to our room. We all snuggled up together and watched a movie from the hotel instead. Your brothers let me pick it which was very sweet of them to do so we ended the night by watching “Oz, the Great and Powerful.” Quinn gave it 5 stars. Liam gave it 4. I was just happy they both enjoyed it and it made a quiet ending to a day that I just wanted to get through without jumping off the side of a cliff.

Now I sit here on the 15th of May, reflecting on what this day was like 2 years ago. It was the day we had your funeral or a.k.a. your celebration of life which is really just a nice way of saying this is fucking bullshit that I had to cremate my kid so let’s try to cover it up by calling it something beautiful. Having my baby cremated is not the way I ever envisioned celebrating your life. Today, I pulled out the white dress I wore on your death day. The white dress that hung on my shell of a body and now hangs in my closet like a keepsake or a wedding dress because I know I will never wear it again. It haunts me hanging there and I often find myself running my hands over it, waiting for the ghost of who I was during that time, to appear. That shell-shocked of a girl who really had no idea of the magnitude of what had just happened because I was in such shock and a deep place of denial. I remember your services, barely. I remember how I was so numb, that I didn’t even cry. I remember making everyone wear white and how after everything was over how Liam went over to a fountain to throw a penny into it. I remember saying, “Make a wish!” and how he looked up at me and said, “Why? Wishes don’t come true.” I remember at that point, it took everything I had to not fall over from the pain of his words. His innocent yet not so innocent words that right then and there, shattered everything I had ever known. Wishes don’t come true, rocked my world in the most fucked up way possible. Wishes don’t come true out of the mouth of an almost 8-year-old that should not be so wise in the way that he is.

I spent a lot of today crying and staring at that white dress while I found the comfort I so desperately needed, in your Poppy sister. I can’t seem to put her down which explains the loads of clean laundry that I need put away. Laundry can wait. I’ll take the snuggles of your sister over clean laundry any day. Your brothers are getting ready for their big basketball game on Friday. So a lot of practicing has been going on over here. Tonight I left Poppy with your Daddy for a bit so I could sneak out for a run. A little 3 mile run that I nearly winced in pain with the entire time. I forgot how bad it sucks to try to get back into running after having a baby. OUCH. Everything hurt tonight but you know nothing can ever hurt as much as the pain I feel from being without you everyday. I ignored the pain from my body and pushed through my 3 miles, slowly, but I was determined not to give up or give in even though every part of my body was screaming at me to do so. I came home just in time to see your daddy through your bedroom window, sitting in on your bed in Poppy’s room. I watched as he stared down at Poppy with such a look of mixed emotions on his face as he played with her little feet. I felt like an outsider, looking in on two strangers. This can’t possibly be my house, my husband, my new baby sitting in my dead child’s room, right? A year ago I would have saw this sight and wanted to run away from it all. Seeing this sight would have been too much for me to handle. Tonight, I had no desire to run away at all and instead I walked inside our house to where your Daddy was walking Poppy all about, carrying her like a little football. I went up to her, let her focus on who I was and said, “Hi Poppy!” I watched as a big smile splashed across her face. “She smiled!” I exclaimed to your daddy. It was a smile that told me that we are all doing alright and that Poppy is the best thing that could have ever happened to us since losing you. I honestly don’t know what I would do without her. She is still the most peaceful little thing. No crying, no fussing, just lots of eating, sleeping, and love. We all cannot get enough of her.

I keep telling myself if I can just get through these tough, tough days, that I have so much to look forward to these coming months. Dr. Sholler is coming into town on Sunday, so I will get to spend a few days with her and pick her brain in regards to my master plan. We have made some plans for dinner and some hikes. I am so excited to have her here and she is so excited to meet your baby sister. I’ve got Macy coming in to stay with us for about 5 days and you know everyone in our house is so excited about that. Bri Bri is also coming out and so is our little, Rachel. It will be nice to see my favorite girls and spend some time with them. As Dr. JoRo says, “Did you ever know that so much sadness and so much happiness could coexist?” I never would have believed her if she had told me this a year ago, but now I find it to be so true.

Alright little man. I must go. Poppy wants the boob. I miss you. I love you. I hope you are safe. Sweet dreams.

xoxo

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“This is how dreams die.” -Woody Thompson

 

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I’m not going to go into why I titled this post this way tonight because not everything can be shared. Let’s just say Woody came home and said this to me tonight for a very good reason. All I am allowed to say is screw anybody that sets out to get rich off of kids with cancer. Fucking unreal.

 

Ronan. I cannot believe your baby sister has been here for 3 weeks today. It has went by so quickly. We still have been lying pretty low and I swear it feels like I have been doing nothing but nesting and breastfeeding her since she arrived. The quiet has been good for me. Or at least that is what I am telling myself for the time being. I do miss my crazy insane I’m losing my mind days. Those days got me through a lot of the darkness. I’m sure those days are not over yet… but for now I am just trying to soak in the peacefulness that you sister has brought into our lives. We’ve had a couple of out-of-town visitors. Your Nana came to help out with things and to meet Poppy. It was of course wonderful to have her here as it gave me a chance to do nothing but focus on your sister and let myself become somewhat human again. I was exhausted not from the lack of sleep I’ve been getting, but from the physical part of your sisters birth and the toll it took on my body. Now I am starting to feel somewhat normal again and I know a big part of it is due to the rest I was able to get with your Nana in town. She took a lot of the slack off and for one full week I didn’t have to touch the laundry or cook a thing. It was heaven and so very helpful.

Your Fairy RoMo popped into town just for a day to come and see her new god-daughter. That was a magical day indeed and so special that I can hardly put it into words what it was like to see the two of them finally meet. It was like for once, something in this world without you made sense for  a split second. If I can’t have you here to meet your Fairy RoMo, having Poppy here is the next best thing. We took Poppy all over with us for the day. We had a impromptu Poppy party that was thrown together by Stacy where we sat around at a cute little restaurant and had a nice lunch. It was pretty much her first time out in the world. After that, we took Poppy to your favorite restaurant, Chelsea’s Kitchen. We sat on the patio and went gagaga goo goo crazy eyes over your sister. As I was sitting there, I was taken back to the night of your funeral/celebration of life/one of the worst nights of my life. I was holding your sister and I remembered being there after we had your services. I thought to myself, how in the world could I have come here with a bunch of people the night of Ronan’s funeral? In my white dress looking like a zombie I’m sure. I hardly remember the night except I remember that somebody went and snapped my picture with Quinn on my lap and I remember smiling into the camera. How I even was able to form a smile is beyond me. I know I did it because Quinn was right there and I was trying to act somewhat normal like this is a fucking normal thing to do. Eating Tuna Tacos with a bunch of people after my child had just died and I sat in the front row listening to people talk about about you, holding your brothers hands, without tears streaming down my cheeks because I was too numb to feel anything. And now, here I am, sitting right back at that very same restaurant while holding your sister and kissing her sweet cheeks. How is this my reality again? I wanted to vomit right there on the spot but I just sat there quietly instead doing everything I could do in my power not to cry and hide underneath the table. I let the scene of that awful night play out in my head instead.

Every time I think about you and what has happened lately it’s like my mind is back to not being able to process it. My mind automatically goes to screaming, “FUUUUUUCCCCCKKKKK!!!!” in my head and that’s about it. Sometimes I cry. Sometimes I don’t. I always feel like I’ve been punched in the gut. I took your brothers back to their therapist last week just to check in with them. Quinn did not understand why he had to go because as he told your Nana, “If I needed to talk about something, I would just talk to my mom.” That was sweet to hear and made me feel good, but I still wanted Quinn to check in with Dr. Rachel. I went to talk to her after she met with Quinn. She said that he is doing really well. That the worry brain he used to have, seems to totally be gone. He also told her that he hasn’t seen me this happy in a long time. That stung a little bit. Happy? How can that be? It almost felt like a betrayal to you, Ronan. Don’t get me wrong, I do want your brothers to see  me this way. This is the way they deserve their mom to be… but it still felt weird to hear that. I just wasn’t ready for that word quite yet. It was like swallowing a really big horse pill and doing everything I could, not to choke on it. Dr. Rachel told me she feels like she does not need to see Quinn anymore, even though she would love to because she thinks he is such an amazing little guy, it’s not necessary at this point. Liam on the other hand, still needs some time with her. He is still pretty emotional about all of this. He tends to keep things to himself more so than Quinn does. We talked about making sure she gets some time with him before the shit storm of May 9th and all the lovely dates after, follow.

Your brothers are of course so in love with your sister. It is so strange to watch them with her, thinking they were doing the exact same thing with you after you were born and how you are just gone now. They both fight over who gets to hold her, kiss on her, and love on her. They both say the funniest things about her. The other day I had an outfit on her that was too big because she is so tiny that much of the stuff I have for her is big. The little tank top she had on kept sliding down and Quinn goes, “Mom, why isn’t she wearing a bra? People are going to see her privates.” I almost peed my pants over that one. The innocence at 9 years old melts my heart like crazy. They both can’t get over the fact that she doesn’t have teeth and Liam sits there with her and tries to teach her to talk. He’ll go over and over, “My name is Liam. L-I-A-M. You’re name is Poppy. P-O-P-P-Y.” It is the cutest thing ever. I’m sure if you were here you would be doing things like coloring on her with markers while I had my back turned or taking her hair and putting tooth paste in it or cutting it with scissors. You were always causing trouble in the best way possible.

Your daddy has been doing things with Poppy like playing her guitar. The other night I was sitting in bed with your sister listening to your daddy play to her. I said, “You need to learn a Taylor song for her.” He asked me which one and said, “Not Ronan. I love it, but I don’t think I can get through that one just quite yet.” I agreed with him and immediately went to one of my absolute favorite song of hers. That one from The Hunger Games soundtrack, “Safe and Sound.” Fast forward a week later and your daddy has that song down to a tee. I remember where I was the first time I heard it on the radio. We were in Maine for the 1 year anniversary of your death. Your daddy and brothers ran into a restaurant to pick up pizza and I was sitting in the car alone. That song came on and I started bawling like a baby. I thought it was so beautiful and could not understand how I had not heard it before. I sat there thinking how much I would have loved to sing this song to you as the words resonated with me so much. Now here we are and your baby sister will grow up with your daddy singing this song to her. Once again, the next best thing to actually having you physically here with us.

Our visitors have still been far and few. Your Sparkly came by last week for a bit just to check in. I showed him your room and how different it is now. I think it was hard for him to see, but he said it looked beautiful. It was hard for me to show him. After that, we mainly just sat on our couch and stared at your sister while catching up on some things. Sometimes a lot of words are not necessary. As we were sitting on our couch he asked where your Nana was. She had gone out to run some errands for me so she was not home and I told him how she has a hard time sitting still. He goes, “Now I know where you get it from.” I just smiled at that. He then goes, “Where is your mom sleeping? In Ronan’s room?” I paused for a minute and told him yes. You see this Ronan? This is why Sparkly gets it when not many other people do. Those 3 words, “in Ronan’s room,” meant so much to me. Sometimes the littlest things mean the most and that is a prime example. Sparkly quietly said how he can’t believe how much she looks like you. Cue tears here. End scene with them sloppily falling everywhere as I said I knew. That dimple. I still cannot get over it.

That’s my update for today. I’ve started hiking/running again. I know I’m supposed to wait 6 weeks postpartum, but they don’t call me a rebel for nothing, right little man? The exercise feels good. Today has been a little tough for a couple of different reasons, but mostly just because I seem to be missing you more than ever. Throw May on top of all of that and it’s a wonder I can even leave the house and function like a normal person at this point. I’m going to go for a run to blow off some of this never ending pain. I miss you. I love you. I hope you are safe. F U Cancer.

xoxo

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  • Instagram is my BFF

    No Easter pastels here! Just a naked baby covered in chocolate. #poppy #ronan #fucancer Weekend ballers. #ronan #fucancer #littleballers She is going to distract them all with her ding dong button. #poppy #ronan #tinyflasher #fucancer Team mascot. #poppy #ronan #fucancer #futureballer #basketballislife @kimmieag17 Dribble dribble. #poppy #ronan #fucancer #futureballer I'm gonna show those boys how it's done. #poppy #ronan #fucancer #littleballer #basketballislife Church with a view. #ronan #fucancer #camelbackmountain #echocanyon #badassesonly Poppy! I promise I'll be right back! #poppy #ronan #nana #fucancer #mommyneedsahikingbreak I continue to be inspired by the youth of today. #ronan #lorde #fucancer #musicislife @quinnthompson24 Lorde with my little royal. @quinnthompson24 #ronan #fucancer #lorde #imthecoolestmomever #hessocute Miss you already, lover. #poppy #ronan #fucancer #rideordie #mommynumbertwo @macymwood Dedicated to my @macymwood. Ride or die for life. #ronan #fucancer #iwillloveyoutilltheendoftime #lanadelrey #iwouldmakeoutwithlana
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