Ronan. You Stink. You Smell like Beef and Cheese.

Ro baby. Hi. I love you. I miss you. For as often as I write to you, I still can’t get over the fact that I am writing to you because you are dead. This will never be o.k. with me. I will never get over this. I will never stop wishing this wasn’t my life.

Yesterday. I mean, really. Was yesterday really necessary? No. But we don’t live in a normal world anymore, so any kind of worry, becomes something major. Remember that CT/MRI scan Quinny had a couple of months ago? Your daddy followed up with a neurologist afterwords. They said it was nothing to worry about but we know that nothing to worry about will never exist again. They said they wanted to see us in 6 months just to be on the safe side. I got a call from PCH on Wednesday saying they actually wanted us to come in on Thursday for another MRI. They wanted to check the blood flow in Quinn’s brain. I, of course, freaked out. I was trying to drive to Dr. Jo’s office when I got the voicemail from PCH. I passed her office twice because that is how distraught I was over this voicemail. I showed up to Dr. Jo’s office, frazzled. I told her I was waiting to hear back from them to see if they were mistaken because the last I heard, we were supposed to come back in 6 months, not 2. I called Dr. Maze to ask him if he could figure out what was going on for me. Nobody could get a hold of the Neurologist to get to the bottom of what was going on. I told Dr. Maze we would just keep the appointment and do another MRI if that is what they wanted. I told him about Quinn and the way he has been blinking his eyes so much… kind of twitching. I told him how I had him at our pediatrician a few weeks ago and that I had mentioned this to her and she said it was probably due to his Type A personality and stress. But now I was convinced it was because he had a fucking brain tumor or something. Aubrey asked why I hadn’t told him this before. I told him because I have been watching it and didn’t want to make a big deal about it as Dr. Campbell told me it was due to Quinn’s anxiety. He told me to just come in so I could put my worry to rest. I didn’t argue.

I didn’t tell Quinn until Thursday morning, that we were going to have another test done. I downplayed it. I kept him home from school and told him it was because I wanted to have a day alone with him. I told him that I wanted to figure out why he was blinking his eyes so much, so were going to go down to PCH for another little test. I made it out to be not a big deal at all. We got to PCH and waited. My Mandy Bee came down to sit with us. She went back with us as Quinn went into the MRI machine. She rubbed my back and made me laugh by sticking ear plugs up her nose. She kept me from throwing up anymore than I had during the day. Quinn stayed calm while we waited in the loud, cold room with him. He was a little champ. As soon as we were done, we gathered up our things. Dr. Maze wasn’t there but I texted him after to tell him we were finished. He said he would call me after the techs read him the results. Mandy and I took Quinn to eat. I didn’t eat as I was too nervous but I sat and pretended that everything was fine as I waited for the phone to ring. It rang. I didn’t even get the chance to ask for the results as Dr. Maze told me that everything was fine before I could even say hello. There was nothing there. He was sorry that we had been put through this again because it wasn’t necessary. I thanked him. I wished it wasn’t necessary but as we know now, everything is necessary when one of your children gets cancer and dies from it. I came back inside to Mandy and Quinn. I told them both that everything was fine. Mandy sent me a secret text asking if everything really was fine. I told her yes. She asked me why I still had such a worried look on my face. I told her because my worry never goes away anymore. I worry about everything, Ronan. You. Quinn. Liam. Daddy. Mostly you.

I wrote the above a few days ago, little one. It’s been a long, hectic week and it took me some time to recover after Quinn’s 2nd MRI. I’ve been writing here and there to you…. but mostly I’ve just been back in my black hole.

Ronan. The Rabbit Hole. It’s a movie. It’s a movie with really good actors. It’s about a mama and a daddy who lose their 4-year-old boy. Not lose like lose him at the grocery store and then they find him 10 minutes later. Not lose like that time we lost Liam at Disneyland only to find him 5 minutes later. I so wish we had lost you at Disneyland only to find you again. I wonder if those parents, know how lucky they are. So, this Rabbit Hole movie. I don’t know why I even bothered tonight. I NEVER watch T.V. or movies anymore but I guess I was just wanting an escape. Leave it to me to go and watch a movie about something like a child dying. Defeats the whole purpose of my getting lost. I don’t know why I can’t just ever seem to take the easy route with things. I should have just put in a mindless comedy. Something that would maybe make me laugh for a second. I guess it was more curiosity than anything. I guess I was hoping Hollywood would get it right. I should have known better. They didn’t even scratch the surface, Ronan. Maybe if I were a normal mom, watching this under normal circumstances because all of my children were alive…. I would have felt differently tonight. If I would have watched this 2 years ago, when you were healthy, maybe I would have thought this movie was so gut wrenching and sad that I would have left the theatre a wreck. Tonight, I almost laughed out loud at some of the scenes. I was also so distracted the ENTIRE movie by Nicole Kidman’s overly plumped up lips. What do they use to inject lips with these days? Collagen?? I’m clueless to things like that but whatever it is…. all I have to say is WHY??? I could not focus on the movie because her lips distracted me the entire time. That lady is so pretty. She is so pretty without those pouty lips. They took away from her character. Hollywood botched that one fo’ shizzle. But they managed to throw in all the stereotypical things that you would assume parents go through when losing a child. The struggle with GOD. The stupid shit people say like, “God needed another angel.” “This was God’s plan.” “He’s safe because God is taking care of him.” Nicole Kidman did freak out in a scene where a god comment was made. It made me laugh because for .1 seconds, her character reminded me, of me. They went on to show the stress it puts on a marriage. No shit. Really???? The time frame of moving on and packing up a room and getting rid of clothes. The Grief Support Group. The friends leaving. The fights with family. YAY FOR HOLLYWOOD! You got it right on the generic surface level. Who wrote this movie? Did they not get any input from real parents who are surviving something like this?? I think not.

They left out so many things, Ronan. They left out how after you lose the most precious thing to you, how the world around you literally feels like it is caving in, every second of the day. How after each day you survive…. because it is only about survival in the beginning… you fall into bed, and pray to anyone who will listen, not to wake up. For somebody to have mercy on you because out living your child is not something you signed up for. What about the sleepless nights? What about the pacing around the house, constantly looking for you?? What about the days that you cannot even leave the house because you cannot stop throwing up? What about the obsessing about what you could have done, differently? What about the buckets of tears that are never-ending and you swear you are going to choke to death on them? What about the way you don’t ever escape your own head and how you wish for anything but this life? How you wish to be beaten, raped, tortured, burned alive….. how you would endure any kind of pain to have your child back?? What about the way that this reality is so much…. too much…. so some days you spend the entire day, pretending like your child is still alive because on those days knowing that they are dead, it is just too much to handle. What about they way you feel so alone, even though you are surround by the most loving people on earth. What about the shame, anger and guilt that want to destroy you. What about how everyday is a fight. How you feel like you are swimming against the tide, day after day. How you have to watch as the people who care about you, look at you with pity… worry… and sadness. How you long to feel things like happiness again and wonder if it will ever come. But then you also wonder if you even deserve it. They forget to portray how the most simple things, become so difficult. How even remembering to breathe, is a struggle. What about the physical pain? The way your entire body aches. The way your throat feels so tight and dry. They knots that are up and down your back. The way your head feels like it has been in a vice. How you watch as everyone around you, goes on with their lives and how hard it is to see. How everyone expects things from you and doesn’t understand why you can’t come to holiday celebrations, birthday parties, dinners, etc….. Please, somebody cut the bereaved parents out there s0me slack. How nobody understands how hard it is to just function, let alone deal with all the social pressure of “moving forward.” How nothing is normal anymore and everyone needs to stop acting like it is. How your dead child, is so easily forgotten and how people just seem to want to ignore the fact that they existed. As if this will erase the pain?? Never. How you are blinded by survival because that is all you are trying to do, is survive….. for as much as you don’t want to. Because I know if you are a mama or daddy who has lost a child, you have wished to not survive this a thousand times. They didn’t touch on what it is, that makes a bereaved parent, go on with life. Is it Fear? Hope? Love? Guilt? Beliefs? All of the above, maybe? I’m still trying to figure that one out.

Ro baby. Did you see us on Saturday? We brought a tree and decorations to PCH and decorated a tree, in your honor. It was the best tree, we’ve ever had. It was so hard to do. It is on the 7th Floor of PCH. The Oncology Floor. We saw Dr. Eshun and gave him a hug. I love that man. Kind eyes. Kind smile. Kind soul. He is not only a good doctor, but a good man in general. I am so very thankful he was the one who had the privilege of taking care of you. I know he will never forget you. Your Dr. Maze came up to see us. I tried to ignore the tears in his eyes as he gave your Daddy a hug. Fucking Mother Fucker Cancer. I hope your tree will make some kids, smile. I put some special Captain Rex’s in the tree, just for you. I love you. This would have been your favorite tree, ever. Why haven’t we always been decorating our Christmas trees, in a Star Wars Theme? It made so much sense on Saturday. I was mad at myself for conforming the years before with traditional trees. Why is it, because you are dead, that the tree we did for PCH, was our best tree ever? The most fun. The most like you and your brothers??

Alright little one. Much more to write, but I need to try to sleep. I am driving up to Sedona tomorrow to see Dr. JoRo so I need to try to sleep. We watched “Elf,” tonight with some friends at the Montelucia Resort. I missed you every second. I cried. Your daddy cried. Everything in that movie, reminds us of you. It was one of your favs. I used to love how you would always quote Buddy the Elf. You would always say, “Mom. You stink. You smell like beef and cheese.” I would then, tickle you until you could take no more. I’m sorry we had to be there tonight, without you. I’m sorry we have to go out and do “normal,” things without you. I thought it was going to be a good family night. I am trying to make us do more of those things. Everything just feels so wrong, Ronan. I love you. I miss you. I hope you are safe. G’nite baby doll.

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17 responses to “Ronan. You Stink. You Smell like Beef and Cheese.”

  1. We, your Mafia are so glad you wrote. I saw Rabbit Hole a couple months ago and thought it was a joke. It was cold and uncomparable to the emotion you share with us. I returned it.

    My girlfriend is a supervisor in pr-op at PCH. She sent out a note advising they were in desperate need of dvds. I’ve been doing a dvd round up here in Flagstaff and will be dropping them off in honor of Ronan…Ill be sure to visit your tree!

    Much love to you.

  2. Maya what an awesome tree in honor of Rockstar Ro !!!

    Thinking of you, Woody, Liam and Quinn but especially thinking of your spicy blue eyed boy!!!

    Peace & strength mama bear!!!

  3. I thought about borrowing out Rabbit Hole the other day…I remember reading from another bereaved parent that it didn’t do the subject justice so I didn’t bother. I hired out My Sister’s Keeper instead…i cried the whole way through.

    Keep putting one foot in front of the other, Maya…and if you stumble, you have a lot of people who will be willing to pick you back up off the floor, or sit next to you on the floor and cry with you.

  4. Liam and Quinn = so handsome. What an amazing tree! Ronan is so proud:)

    Hugs -Stefanie

  5. What a beautiful, imaginative tree! And what a pity Ronan was not there with you to take that beautiful famliy photo. Stupid fucking cancer…

  6. So glag Quinn is fIne. Sorry you have to keep going through so much.
    Love the tree at PCH,can’t wait to take my son to see it, he was a big Star Wars fan. So wonderful that your family did that, it will brighten up PCH for many children. As always your entire family is in our thought and prayers.

  7. I came across your blog randomly today while searching for mommy blogs to help advertise my new website serving kids with special needs. Now I can’t stop crying. I was actually hyperventilating while reading this post. Fu*k my website work today. What a beautiful child Ronan was. Gorgeous old soul eyes. God, you’re so strong to be able to write about it and share your pain. I am both shattered and totally inspired by your story and your incredible strength!

  8. That is the most awesome tree I have ever seen!

  9. Maybe it was the best tree ever BECAUSE it was so hard to do and so much love went into it.
    Hollywood pretty much never gets anything completely right. Look at the mess they make trying to intrepret books – the written word into pictures. They would have to turn a 2 hour movie into a 20 hour mini-series.

  10. Ronan’s tree ROCKS!!! You and your family are always in my prayers. Maya, you are a strong woman and I think the work you are doing to put an end to childhood cancer is amazing. Thank you!

  11. Thinking of you and your family, always sending our love and support. Loved Ronan’s tree…:)

  12. Maya,
    Even though I have never met you, or your family, or your sweet Ronan… there is not a day that goes by that I don’t think about you. I see the word “pity” in your first quote-picture on this post and I had a thought…. It’s so strange how as human beings we hate the idea of being pitied, and yet, we yearn so badly for people to understand our pain so that we don’t feel alone. Maya – I wish I could do something to not make you feel alone in your pain, but I don’t think I really can. I think all I can do is tell you that I love you, and that I’m here. ( I don’t expect you to email me or even respond or anything … but that doesn’t make the offer any less sincere!). I don’t know what you are going through, and no hollywood movie or even reading your incredibly honest blog will truly change that. But, I know that your pain is real. Real in every sense of the word, physical, mental, overwhelming, consuming, real pain. I am so sorry you have to be in pain. I’m so sorry mother fucking cancer took your Ronan, what a fucking bitch.

    Also, I don’t think you are crazy. And I’m not waiting around for you to “move on” or “move forward” I am simply watching you survive right now. I have zero expectations for you, only love and support.

    Also, I think that tree is awesome.

    Sending you lots of love,

  13. Maya, Ronan’s tree is beautiful but that sad incomplete family next to it will forever be embedded in my heart. I’m inspired to do a tree that my kids want this year in honor of your little Ro. And “darling, put on a fake smile today”…..better yet, put on a Miranda fake smile today!! Here’s Miranda’s version of I’m Sexy and I know, It made me laugh:

  14. I am so glad Quinn is okay! I love the tree and all the photo’s, thanks for sharing! Praying for you and your sweet family today Maya. My heart goes out to you! Wish I could give you a big hug! Think of you all often! xoxoxo

  15. Thinking of you EVERY single day…
    That is THE best tree EVER…
    Love, support, hugs to you always.

  16. All day in my mind was the picture of you guys without Ro in front of that tree–giant empty cavernous hole. I am beyond sorry, Maya–for each of you……Sending you so much love and hope that the next minute will somehow be brighter than the last and that enough light will seep through EVENTUALLY…that it will not be soooooooo hard to see, hear, & feel Ronan all around you

  17. I am so glad that Quinn is ok. The tree is fantastic. I will skip watching the Rabbitt Hole. I seem to be able to watch funny mindless shows/movies. Real life is too sad as I know that you know. Sending you peace & hugs & a big fuck you cancer. xoxo

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