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

1379195287981861

 

 

 

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.

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

tumblr_mqyqlt4jPc1rod34eo1_500

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

I am either allergic to our house or Poppy is a vegetarian.

Ronan. I really was not going to write tonight, but then I lay here with these thoughts swirling in my head and I cannot sleep. Please hold. I think I might have to throw up. I am back. Throw up I did. Disgusting. I think it’s official. There are two very logical reasons behind why I am still getting sick. 1) I am allergic to our house which makes perfect sense to me, but nobody else. Why wouldn’t I be allergic to our house? I, as a mother am living, eating, sleeping, barely breathing in the house I lived with you, but you are not here because you are dead from childhood cancer. To me, that would make any mom extremely sick. Or 2) Poppy is a vegetarian and is pissed I ate a chicken taco for dinner tonight because as soon as I got to our front door and was yelling at your daddy to hurry up and open it before I barfed all over our porch, I made it inside just in time to barf in our hallway toilet. Those are just my two theory’s though. What do I know, I am only a grieving mom and due to this I think half of the things that go through my mind, are not very rational on many levels. I’m not embarrassed or ashamed to admit that, it just goes hand and hand with always feeling like you really do not know what you are doing, after losing a child. Nothing makes sense. The big stuff that I used to think was so important, seems so trivial. I often feel as though I live on planet mars and everyone lives a normal life on earth. I’m learning to become o.k. with that, but it still feels really, really lonely at times.

Today, I went to my very important office where I did very important things like start a fight on Twitter. O.k., I did not start a fight on twitter, but I got wrapped up in one and before I knew it, my impulsive side took over and I made some snarky remark where I compared someone’s else’s pain (which I don’t understand, because I lost you so sometimes think I know EVERYTHING about pain), to the pain of losing a child. I knew it was wrong to do, but I felt I had every right to comment because I as a bereaved mom tend to get so easily offended when I hear people complain about what I think is really stupid shit. I mean please, what I wouldn’t give in this world to have normal problems which do not include a dead child. The bottom line is, it was wrong and childish and I am very sorry. I learned a big fat lesson which is sometimes I need to step back and shut my big fat mouth. It’s never nice to compare pain but man, how I wish people would also just sometimes take a step back and just be thankful for being alive and in this moment. I guess because you were robbed of that Ronan, I will probably always be overly sensitive to living in this world where I see so many people taking the simplest things for granted. I, of course want to slap them all and throw you in their face, but it is not my place to do that. I am going to try to work on remembering that more. So besides my Twitter war, I was really productive.

I went and surprised your brothers today and took them out of school early. I did not tell them I was doing this because another thing about this world is it’s really hard for me to commit to things because I never know what state of mind I am going to be in. I did not want to tell them I was picking them up early, then not show up because I was having a day where I was shackled to my bed. Thankfully, I did not have one of those days today and I got to surprise them at school instead. I pulled them out early so we could go over to Fernanda’s house to watch Taylor Swift on Katie. They were so excited and happy that it melted my heart a bit. We arrived over at Fer’s house and Stacy and her kids joined us. It was a nice little pow wow of an afternoon where I got to watch your brothers run around and be kids, while also being with my friends. Your brothers had basketball practice so we had to leave pretty quickly after the Taylor show ended. We ended up meeting Stacy and her family for dinner but before we got there, I had to have a talk with Liam in the car. His teacher today, asked me if we have had his eyes checked. I told her we had, and that he has glasses that he is supposed to wear, but won’t wear them at school. I told her how we make him wear them at home, but getting him to actually wear them at school, has been an issue. I told her that I would talk to him about it, this weekend. Of course that meant tonight. I gently brought it up in the car on the way over to dinner. Liam got so upset. As in crying upset. He was still crying when we got to the restaurant. I walked with him and put my arm around him, trying my hardest to tell him how great glasses are and how important it is, that he wears them. He wasn’t having it. I had to bite my tongue as I was watching him cry and let me tell you, it took everything for me to say, “Glasses are NOT something to cry about. Cancer is.” I said it in my head alright, a few times. I thought about how that would make HIM feel, to have that said out loud to him. I decided against it and tried to work some different angles instead. We will talk about this more over the weekend, and hopefully I can have it talked into by Monday. I get it. He’s 9. Glasses will make him different. What kid at 9, wants to be different? He is already different enough by having a dead baby brother. You know how much this breaks my heart. I wish I could fix all of this, Ronan. I so with your brothers did not know what it feels like, to be different like this.

We were driving home and I pulled out my phone to show your daddy the new license plate I ordered today because my tabs are expired. They have a new license plate in AZ for childhood cancer, which you know I am thrilled about. I was playing with it online, getting ready to order my personalized plate. I typed in two options. The first one being FUC (Fuck you cancer) of course. I laughed out loud at that one. The second one being Ro Baby. I went back and forth for a bit and once again those brothers of yours, popped in my head. I made the decision to order the Ro Baby one instead of the one I really wanted, for the sake of them. Of course I wanted to get a rise out of your daddy, so I told him I had ordered the FUC one. Your brothers were in the car, too. They were mortified. Well, at least Quinn was. He goes, “Mom. Why did you have to do that?” When I saw how upset he was, I quickly told him I didn’t really, that I ordered the Ro Baby one instead. He goes, “Thank you for making the right choice.” It’s moments like that, where I am simply blown away by how sweet, innocent, and level-headed your brothers are, even after going through something like this. It reminds me for as much as I think I am doing wrong, I must be doing something right. They are proof of that.

I’m going to end this here now. My stomach is feeling a little better and I am wiped out from not sleeping well at all last night. I tossed and turned in your bed all night long. It feels so wrong, to sleep there without you. I love you, Ronan. I miss you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo

Valentine’s Day is for Suckers

Ronan. All I want for this Valentine’s Day (aka the STUPIDEST holiday ever) is you back. Since that cannot happen, I am going to work really hard to make ROentine’s Day, somewhat nice. I’ve ordered our cupcakes to drop off to our lovies at PCH tomorrow since that is what we did last year. I am going to do it again for you, this year. Your daddy asked if I wanted to go out tomorrow night. I looked at him like he had 12 heads and said, “Not unless you are letting me go out, armed with a machete.” He said he would not, so we will stay in. Although going out, with a machete sounds like much more fun. You know, I wonder if I will like ANY holiday again. Halloween still seems alright… because it was your favorite. I’ve never been a big fan of Valentine’s Day. Now, it seems extra stupid but that could just be because I am a mad/sad/angry/crazy mama now. Or it could just because I have always thought a holiday to celebrate, “LOVE,” was a commercialized scheme to buy overpriced red and puke me now pink shit. We should be celebrating love everyday. Especially if we have all of our kids. I don’t have that anymore so I get a hall pass to do whatever I want. So now, Valentine’s Day is for suckers and ROentine’s Day will take over. What will we do tomorrow? We will not wear pink. We will not wear Red. We will maybe wear all black because my heart now feels dead and black. But we will do nice things for other people. We will do something to make someone else, smile. We will drop off your cupcakes. We will not buy flowers which are a waste of money and all they do is DIE. Fuck flowers too. Add it to my list of things I hate. No flowers. Flowers are too pretty for our black broken soul.

Quinn has been sick the past couple of days. I’ve been playing the very patient, loving, nurturing mama role. Today, I’ve decided that I’ve had enough and only want you back so I can take care of you and your cancer. His cold/stomach ache is wearing thin on me. I had that moment, where I panicked and thought his stomach ache actually meant he has a mass in his tummy and it is cancer. I took him to the doctor to have him checked out. We were sent home with its nothing. We are of course, always skeptical as our mind now thinks it is the worst thing possible. Isn’t it fun, living in the world of your child died from cancer so now everyone is dying, too?? Love this life, Ro baby. It’s amazing.

What else has been going on???? Just the usual madness. Went hiking yesterday. Put on my Van Fuckin Halen shirt. Your daddy looked at me. “You cannot wear that hiking. Why do we always have to have these conversations?” I just looked at him. “Ronan is dead. I can do whatever I want. I’m wearing it hiking today.” I left the house in my shirt. Only one lady said something to me. She said, “Van who?” I said, “Van FUCKING Halen, lady!” She laughed. Ha! A stranger with a good sense of humor. I went with Mia’s mama, Sandra. So I had an extra reason to wear that shirt yesterday. Two cancer mama’s. One with a baby who is dead, the other mama with a baby who is in a wheelchair from her cancer treatments. I was prepared to defend us if we needed it. We didn’t. Everyone on that mountain knew better than to mess with us. They could probably see the anger/sadness in our eyes. I can guarantee you, we were the two most broken-hearted mama’s there. But it was nice to be with Sandra. We will have an unspoken bond/friendship for the rest of our lives. But I wish it didn’t happen this way.

Today, I stayed at home with Quinn. I was in the middle of my own pity party when a little text message popped up. Tears sprang to my eyes. No. NONONONONO. Fuck!!!!!!!!! Quinn watched me. “Mom. What’s wrong?” I just looked at him. “Nothing baby. Just a little sad. Just a sad day.” Your daddy came home to the rescue. I slipped out for a dark run. I had sent our favorite lovie an FUC (fuck you cancer) text which in turn, made my phone ring 10 minutes later.

Mr. Sparkly Eyes:”Where are you?”

“I’m running.” which was true but I was also running while crying hysterically so I know what I sounded like.

Mr. Sparkly Eyes: “I need you to stop. Stop running. Please go and sit down somewhere and listen to me.”

I sat. I listened. I also screamed, cried, sobbed, and yelled into the phone.

But I calmed down. I also laughed at something ridiculous that was said. I was also told not to give up. That FUC is nowhere close to being done. I stopped crying. I told him thank you. I looked up at the sky thanked you, for our lovie too. I promised you two I won’t ever give up. I won’t break my promise.

I continued my run. I didn’t listen to my music. I talked out loud to you instead. I begged you to keep working as hard as you are working…. I begged you to continue to push me. I begged you to watch over our little friend. I begged you to take care of some things up there, so I could take care of some things down here. I screamed how I never wanted this. How I only wanted you. I screamed that I would fix this because your death, will not be for nothing. I imagined living this life, with you again, but next time it happens and you get this disease, there will be a cure so you won’t have to die again. I just want you back now. I don’t want to have to wait to see you, until it is time.

I’m tired. I’m sad. But I don’t have a choice. This is not me, Ronan. I don’t want to do any of this, but I will. I will do this, because you are the one pushing me. I know this. I will listen to you for the rest of my life. I love you so much. I hope you are safe. Sweet dreams, baby doll.

xoxo