Hello suicidal friend. Wanna go to Ikea with me?


Ronan. I had a dream about you this morning. I was up off and on all night last night. 12:30 a.m. awake. 3:25 a.m. awake. 6:23 a.m. my phone rang. It was your Sparkly. I shot right out of bed. My heart sunk. Why is he calling so early? Something must be wrong. False alarm. Everything was o.k. I fell back asleep after that. In my dream, I was with your daddy, I think. You and your brothers were sleeping somewhere else that wasn’t our house. I made your daddy drive over to check on you. We opened up a back door to a house that was unlocked. We crept into a bedroom. I was only concerned about seeing you. In my dream, I didn’t know you were dead. I ran over to the bed where a tiny little boys’ feet stuck out of the covers. I pulled down the blanket off of your face just in time to see your beautiful full head of hair and watch you open your eyes and look at me. I kissed your little cheek and felt so happy, but I didn’t know why. I get to see you all the time, in real life, right? I remember saying to your daddy. “He opened his eyes.” Just as I said this, real life happened and the noise from your brothers, jolted me out of my sleep. Oh, how I would have given anything to have had more time with you in that dream. It took me a minute to remember my dream and that you were not here, for me to kiss. That is always the hardest reality to wake up to. The fact that I only get to see you, in my dreams and not here, in your bed or running around our house is such a cruel, horrible reality.

I got up. Helped make breakfast for everyone. Acted as though everything was o.k. this morning when mornings around here are never o.k. My heart has been heavy for the past few days. Remember that sweet boy, Teddy, that we spent some time with in San Diego this summer? The sweet little Teddy that reminded me so much of you? He has been doing really great, then suddenly out of the blue, his parents find out that his Neuroblastoma is spreading like wildfire. They have been told there are not many more options left. His mom, whom I adore, is faced with the decision to just let Teddy live out the time he has left here, or put his through some really harsh chemo to try to slow this monster down. The same kind of chemo, that left us inpatient at Sloan for 24 days, and did nothing for your disease. My heart is breaking. I don’t understand how this can just keep happening to these kids who are so loved in this world and are so innocent. I feel so helpless for his family. I don’t want them to know this life I live, one without your child. It is just too cruel of a world to live in. Please keep Teddy in your thoughts, prayers or whatever else you do. Ronan. You know what to do little man. I promise I am trying to fix this as best as I can. I just can’t keep up with all these kids dying, one after the other. I wish I had a magic wand and wishes really worked. I wish everything was that simple. You can visit Teddy’s caring bridge, here. I know what his parents have decided to do. I will wait for them to post an update, to tell us all.

http://www.caringbridge.org/visit/teddybergergreer/journal

Even though it might seem like I’m in a really dark place right now… because I am. I am still managing to somewhat function in this too bright of a world. For instance, yesterday I went to a kids fest, Ro. A kids fest without you in tow. Do you know how achingly hard this was for me to do. A festival full of healthy kiddos, just as the world should be. There was not one bald head in sight. I was asked to do a reading there of the kids book, “The Lorax.” I had so much anxiety about this the night before. I tossed and turned. Dreamed about not being able to get through the book, without you there. I took your daddy and your brothers. Fernanda and her 3 boys met us there, too. I sat in a chair and read this story to about 20 kiddos. I talked to you before hand on the drive out there. I closed my eyes in the car. “Please Ronan. I need you today. Help me get through this. Keep me calm, cool, and collected. Help me do this. Stay with me. I need your help today.” I thought to myself, this can either go two ways. I can lose my shit and not be able to control my emotions as I knew having to look out into a sea of kids, and not see your face was going to be rough… or I can keep it together and stay focused on the people I had there, who I love so much. I looked out into the audience. I saw Fernanda’s face. Her boys. Your daddy. Your brothers. I looked down at my feet to see a random little girl, playing with my sparkly shoes while I was reading. This made me smile. I can do this today. I will do this today. I will do this and be proud of myself for doing something that feels so hard to me. I let myself be proud for the .2 seconds that I allowed. That is all I needed. Your brothers had the best day. They got to run wild and free after my reading and enjoy being the 9 year olds they are. I am always glad to see that. I let that be enough for the day.

I have been busy around here getting ready for our Macy’s arrival. Quinn has probably asked me about 10 times what day Macy will be here and what time. She changes the whole dynamic of our family in such a good way. For the time that Macy is here, it is always a time full of laughter, love, and peacefulness. We seem to always have plenty of tears, too, but somehow the tears feel easier when Macy is around. I am so thankful she is coming in for our second annual Macegiving. I am so grateful for our sweet friend who is a part of our family. I am so thankful that she will be here for us on another one of our hard holidays. They all seem pretty hard, but things are a little less hard when Macy is around.

This is all for tonight, little one. Rita just texted me, “Hello suicidal friend. Wanna go to Ikea with me?” That is some seriously funny shit right there. At least it totally made me laugh out loud.  I miss you. I love you. I hope you are safe. Sweet dreams, Ro baby.

xoxo

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16 Comments

  1. Lisa r

     /  November 19, 2012

    My heart goes out to you every time I read your posts. I am still not sure who Mr. Sparkly is. Can you clarify? Thank you

    Reply
    • Louey

       /  November 21, 2012

      Hey Lisa,
      Maya did clarify – she wants to keep the identity of some close people private. Though she at times makes it obvious who the person is in terms of how he’s related to her. I guess it’s more important who he is to Maya i.e. the only person who 100% understand her.
      Peace

      Reply
  2. Glenda

     /  November 19, 2012

    RoMama,
    I’m so happy you had a dream with your beautiful blue eyed spicy monkey :)
    So proud of you. Always moving forward for Quinn & Liam. Rockstar Ro pushes you forward. Right there beside you.
    Hoping all is well with Poppy & nauseau.
    Thinking of you!
    Always Rolove
    XO

    Reply
  3. I saw the sweetest little blond boy today in a park in NYC, playing with his little Star Wars toy, and I immediately thought of your sweetest little boy. I will say a prayer for Teddy. I think it’s often kinder to let someone on the brink of death pass peacefully, rather than treat them until the last second. But then again a parent whose child is on the brink of death would do literally anything to save him. It is such a hard decision to make, that fine line between life and death.

    Reply
  4. JessiLee

     /  November 19, 2012

    HAHahaha. The text.

    I miss Ronan. And I don’t even know him. How is that possible?

    Reply
  5. Hilary

     /  November 19, 2012

    Hi, I wont lie a was to lazy tonight to read everything today, to much presure at school,… But I clicked on the link u post amd just read the story of Teddy and it makes me so angry. How the fuck is this possible !! Im 18 going to college so i dont have jobs but I promise that next time I will earn money I will donate. Because the tought that it could be someone of my family I’d apreciate if people help research against cancer. (Srry for my english im french )

    Reply
  6. Love it when Rita pops up – she’s always good for a laugh.

    I’m so glad Ronan visited you in your dreams…I just wish that it didn’t have to be the only way for you to see him. Love you, Maya.

    Reply
  7. Melissa

     /  November 19, 2012

    Thank you for posting the link for Teddy. I have been following your beautiful son’s story, as well as Cindy Campbell’s for SuperTy. What you are doing for all of these children with cancer is so amazing. I worked as a Pediatric OR Nurse for 15 years until it just became too much to deal with seeing all of these children suffer day after day takes a toll (worked at UCSF with Dr. Matthay for years) and I’ve wanted to do something besides write a check ( I know we need that too, but I’m a doer!). I am in Oakland CA, so I was looking to do something with my children and for someone local. Teddy and his family are in the next town in Berkeley and they had a link to Juliana’s Journey, which is holding a fund raiser for holiday toys down the street from my home. We are going to collect donations from our high school and make sure that 100% goes to kids with cancer. Thank you for sharing your journey with us, it is so important to be able to put a face to this devastating, cruel and heartless disease.
    I wanted to write to you before when you were discussing your anger with Dr. K (who sounds like an absolute asshole by the way, and I’ve worked with a lot of them). I really hope one of those nurses that works with him let’s him know what he did to you. (BTW, working on that, know some fabulous RNs in NY.) He needs a reality check and a kick in the ass (or balls, much more painful). However, I just wanted you to know that over the years, I’ve seen these guys completely collapse over the loss of one of their patients. They develop that facade because after they lose one, they walk right into the next room and there is a new family in their just beginning their fight against the evil cancer. No excuses here – just wanted to acknowledge the great ones too. Take care of your boys and little Poppy (LOVE the name, its perfect). And please know how many people that you have never met, never will meet have been touched by your honesty and admire everything you’re doing to fight against cancer.

    Reply
    • Lizzie

       /  November 20, 2012

      It’s great that you want to do something with your kids. I am amazed by the way Ronan bridges age gaps. I know grandmas who adore him and tween girls who are inspired by him.

      As for Dr. K knowing what he did and the unforgivable way his actions hurt someone who was already dealing with the worst pain possible- trust me when I say this: HE KNOWS. My cousin was treated by him (she too died) and whenever his promises go unfulfilled, he turns tail and runs like a stray dog caught in the garbage.

      Numerous staff members printed out Maya’s letter to him and left it on his office door, under his windshield wiper, etc. He already knew because he had been told but the people who work with him wanted him to know that THEY KNEW his true nature as well.

      It doesn’t matter the level of genius you possess if you run and hide the moment your genius isn’t enough. He looked my uncle straight in the face and said “we will get her well and get her home”.

      The only time my cousin ever went home after that was to die in her father’s arms.

      That is not his fault. But he should stop making these wild promises of complete healing and cure when they are only based on SOME of his experiences.

      Reply
  8. You are so strong. Strong and selfless. You shouldn’t have to be but you are, and I know your family and friends love and admire you for it. Keep writing. Keep getting it out. You are changing lives and rewriting the future. I will be thinking of you and your wonderful family this holiday season. One day, one step at a time. We are all behind you in support.

    Reply
  9. Mom too

     /  November 20, 2012

    I am sure you made many kids happy with your reading of the Lorax. Your own boys seeing you and listening you made them happpy and excited too! What a good thing to do. Have a wonderful Macegiving . HUGS

    Reply
  10. Erin

     /  November 20, 2012

    I’m happy you saw Ronan in your dreams, He is always with you Maya always! I hope you have a wonderful Macegiving! Your an awesome woman who is doing so many great things!

    Reply
  11. Becca Consacro

     /  November 20, 2012

    Thank you Maya for posting the link to Teddy’s story. Clarence is one of my best friends in the world and someone whose strength and determination I have admired for almost 20 years. I am so excruciatingly sorry this happened to your precious Ronan and it makes me want to kill someone that it is still happening! I don’t want you to have to be a lesson for me- teaching me to appreciate every second of my children’s lives, and I don’t want that for Clarence or any other parent. But thank you for doing exactly that and for bringing awareness to this terrible disease. I am praying and pleading for a miracle for Teddy.
    You are awesome by the way and Poppy will be one lucky little lady to have such a strong, beautiful person for a mom!
    xo, Becca Consacro

    Reply
  12. I feel like suck a fucking idiot. Since finding your and Ronan’s story I have tried to always count my blessings twice and not to sweat the small stuff. We are in the process working with specialists to diagnose my 6 year old daughter’s learning disability. I’ve said out loud to others and also to myself, as long as she is happy and healthy everything will be fine. I do know this to be true, but sure enough today I was feeling sorry for us, sad, and scared. I got your post about only getting to see our baby’s eyes in your dream and the nightmare that Teddy’s family is going through. Reality hit me like a 500,000 tons of bricks or bullshit. I’m sorry that I was being a dumbass, you cyber slapped me across the face today! You go RoMama!!! Happy mace giving!

    Reply
  13. Maya,
    I am another nurse who has seen too much pain. I wanted to let you know that while I can’t begin to comprehend your pain, I understand the suicidal thoughts. The way I heard someone describe it best is “You don’t want to die, you want the pain to stop”. That is what I keep praying for you – not that the pain will stop because I don’t think even you want the pain to go all away but that it would feel a little more bearable. I think that having all the pain go all away would feel bad too because it would be like forgetting how important he is to you. I also want you to know that there are many of us out here that wish we could take some of your and your family’s pain away for you. Fuck Cancer.
    Julie

    Reply
  14. Emma

     /  November 28, 2012

    Lots of love for today ! your twins are handsome and you’re too !
    LOVE YOU RONAN !

    Reply

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