Sparkly Toes, Fingers, and Eyes…..


Ronan. I gave in after trying everything to go to sleep last night, and popped my old friend, Ambien. AKA-the Devil. I couldn’t take it anymore. My skin was crawling, my head was screaming, and I was tossing and turning. I had all I could take. 2o minutes after taking that evil little pill and I was out cold. Until 7:30 this morning. I woke up,wishing I had not, and praying to a God that I don’t even think exists, to let me go back to sleep for the next 5 years. Somebody, please put me out of my misery. I ask for this everyday, but nobody is listening. I had no choice, but to get ready for the day ahead.

I dropped your brothers off at school and headed to Starbucks to pick up some Coffee and a treat for Mia. I had told Sandra, the night before that I would come down to PCH to keep her company. I parked in our parking garage, and sat in my car for a while. I gave myself a big pep talk and headed into the Clinic where we used to spend so much time. I was o.k., walking in. I found Sandra and Mia; who was in so much pain. Fucking Cancer. I have not seen Mia in such a long time. Sandra brought her in today because the little button, that she has inserted in her stomach to administer all of her medication, is a bloody mess. Obviously, something is not right and Sandra was at her whit’s end. I went back with them to a treatment room. I saw Dr. Eshun who gave me a big hug and smile. He is such a good man. I sat with Sandra, and helped her as best as I could. It actually felt good to be of some use to someone today. This is how I know I am meant to spend the rest of my life, with little people like Mia. I felt at home, being back in that clinic today. I sat and watched as Mia cried out in pain and rubbed the outside of her “button,” which looks so raw and painful. I did my best to distract her with my laptop and a cartoon on my computer. My battery died as I didn’t charge it the night before. Note to self: do not show up at  a hospital with a dead iPad and Computer battery. Total fail.

Mia was seen by one of her nurses who sent over to the surgery area and to wait and see one of the doctors. I brought my “Happy Birthday,” nail polish along and sat in the waiting room and painted Mia’s toenails. She loved it and it made me happy as I thought of you the entire time I painted her little piggies. I sent our Mr. Sparkly Eyes a picture of Mia’s toes, just for you, and told him they were almost as sparkly as his eyes:) You so loved showing off your sparkly toes to him, Ro. You would have loved Mia’s today. I wear this color a lot; just for you.

After being in the surgery waiting area for about 2 hours, Sandra was finally told that Mia probably has an Ulser, which is what is causing the pain and bloody discharge. The doctor gave her a couple of options and she decided to take Mia home and start her on some new Antibiotics that they prescribed to help with the pain. They will take care of getting a scope into Mia’s tummy next week to make sure this is what the problem is. I let Sandra check out and pushed Mia’s stroller outside to the elevators. I kissed her little toes and rubbed her little bald head as she looked at me and told me how much she was hurting. I just told her how sorry I was and how I wished I could take away her pain. I vowed once again, not to stop this crusade until changes are made and awareness starts happening. I swore as I looked at Mia’s beat down, little body, that I will help her mama fight for her, as hard as I can.

After Sandra and Mia left, I ran inside the hospital to see our friend, Super Nate. I had yet to meet him and I had talked to his mama, Beth earlier in the week, so I knew they were there. She asked if she could come down to the cafeteria to see me or if I wanted to come up to meet Nate. I told her I thought I would be fine coming up. I did and walked into the new hospital, up to the 7th floor. I hadn’t been on the new floor yet. The new hospital is so big. The rooms are very nice, but the home sweet home feeling of the old hospital, seems to have been lost. I found Nate and his Mama in their room and Nate was watching T.V. He is so beautiful, Ro. You two would have been great friends. I chatted with his mama for a few minutes, asked Nate a couple of questions, and told him I would come back to visit him with and would be sure to bring him some new Star Wars guys. I told him about your buddy, Captain Rex. I will make sure he gets to know him for you.

As I headed down the elevator, I thought to myself, that I did an o.k. job…. that I was capable of handing all that I had made myself do today. Just as I was walking down the hall, it was as if I was sent back into a time warp. I found myself standing in that exact same spot, by the cafeteria, where I chased you down the hall and you told me you loved me to the moon and back. I pictured your bald head, your little Star Wars pajamas and I felt like I had the wind knocked out of me. The tears were pouring, I felt like fainting but I somehow managed to throw my sunglasses on and almost sprint out of there today. I wanted nothing more but to turn a corner and find you there, hiding from me. To hear you saying, ” I Love you, Mama. You’re my best friend.” I can’t believe I’ll never hear those words from you again, Ro.

I spent the night hanging with your Daddy and brothers. It was a low-key night and your Daddy walked down to Uncle Jay’s for a while to hang out with his friends. I spent the night cuddled in bed with both of your brothers. I took an Ambien to sleep. Yup. I had no choice. I had to get up early this morning to meet Samya for a run on the canal, Ro, and I had to get some decent sleep. I did, too. A solid 7 hours. I bounced out of bed at 6 a.m. and headed over to Taylor’s to meet Samya for our 6 mile run. It was good. I got rid of the mental block in my head as you know how much I hate that stupid Canal. Dusty, ugly, dirty, smelly, and bugs everywhere. I did my best to pretend as if I was running back in NYC….. God, how I miss that city. 6 miles went by in a blur there. The 6 miles today, was o.k. It felt good to be up and out running with my new friend. She is going to be a great motivator; but my heart just felt lost without you. I thought back to the time I pushed you for 13 miles on the Canal, with Marisa, in the jogging stroller. I remember how happy I was to have you with me. How much I loved to push you as I ran. You were so content to just sit there, as long as you were with me. You were my Yin and I was your Yang. Nothing else mattered.

I’m back home now. Everyone is sound asleep. Liam and Quinn have a basketball game this afternoon. I will take you with me to watch. I take you everywhere I go; just in a different way now. Ronan. So many kids are losing their battles with Cancer, everyday. I’m sure it’s always been like this, but now that I’m aware of it, it seems as if everything I read says, “So and so lost their battle with Cancer today. He or She earned their angel wings. Fly baby, fly.” I fucking HATE those words. Angel Wings? Give me a fucking break. This may bring some people peace, but it does the opposite for me. It just pisses me off. No child should have to be wearing angel wings unless it comes in the form of being alive and running around with pretend wings on and a magic wand. Angel Wings my ass. I guess the thought of this gives some people comfort, but it’s not for me. I’d rather think of you still here, close by me…. not far away, flying around. I don’t want to think of you as an angel… I’d rather still think of you as my Little Devil.

It’s late now and the day is gone. The day was spent hanging out. I went to The Village, to watch your brothers play in their basketball game. You would have been so proud. They played their hearts out and won their game. It was so fun to watch them play with such fire. I thought of you and how you would have yelled and cheered for them. How you would have went and sat on the sidelines next to them, instead of next to me. You always loved to be right in the middle of everything those two did. I felt sad today, sitting there watching something so happy. I put on another good show today and hid my tears from everyone. Your brothers saw nothing from me but my smile and the proud look in my eyes. Fake it till You Make it!! Everyday of this life so far without you. The days I don’t feel like faking it, I just hide in bed for most of the day and put together my master plans. I love those days the most. When I’m alone, the house is quiet but I have 50 busy projects going on. I love when Fernanda comes to try to kidnap me but she gives in and just stays in bed with me. You’d be surprised how much we could accomplished with our coffee meetings in bed. I think movie watching should be mandatory as well. Lots of coffee, Coke, and Junkfood can inspire amazing things. I think I would like to hold all “business meetings,” in my bed. Pajamas required. I could be content to never leave this house again. The sunshine is just too goddamn bright out there. I’m so over this sun. I told my friends on FB today, that I have decided to move to Forks, Washington and in with Edward Cullen. I could totally do the vampire life in dark and dreary Washington. Makes me homesick. I hate waking up everyday to “HELLLLLOOOO CHEERY SUNSHINE!!!!!!!!!!” Shut up. There is nothing to be cheery about out there. Bring on the dark, gloomy, cold, rain. Fits my mood to a tee.

Is life always going to hurt this much, Ro? Is anything ever going to feel good again?  I’ve survived another weekend and I’m exhausted from a weekend of pretend happiness. Pretend normalness. Normal things around the house. “Oh look, the Raiders beat the Jets!” “Come to dinner with us, Mom!” “Do you want to get Ice Cream, too?” I muster up the energy to tackle these normal things, but all I want to do is baracade myself in your bedroom and go to sleep for the rest of my life. Happiness is all around. Laugher is everywhere.  It should feel good to me, right? It doesn’t. It’s exhausting and I want a break. I would like to selfishly leave this life of mine behind, and disappear for a while. That’s right. I said it. And I get it. I get that I have sooooooo much to live for. I have soooooo many people who love me. But does that make any of this any better? No. It doesn’t change the fact that you are gone. And all I want is to be gone too. I’m sorry, Ro. I guess I’ve had a bad week. I really wish there was a magic wand that would make me feel better because I’m getting tired of feeling this way. Hopefully this week will be o.k. I’ve got a busy enough week ahead of me full of trying to find my way through this fog.

Or maybe I need to say peace out to AZ and go find some real fog somewhere that will allow me to truly get lost. All I want to do is to get lost. All everybody else wants me to do is to find myself. Here’s a little secret, peeps. You are never going to find me, because I am DEAD. The former Maya, does not exist anymore. When you died, Ronan. You basically took me with you. It was the only way for us to stay together. So now, my soul belongs to you. Someday, I hope to be reborn. But I will never be the same girl I was before all of this. Who knows, maybe I’ll be even better. If Ronan has something to do with this, I know I will be. But stop with the pushing. It’s not happening unless it happens on my own. This is why I have been renamed Maya Inca Thompson. My alter ego, badass name. Inca Forever! Thanks Travis Tinney. You are awesome.

I should probably go now, baby boy. I’m too full of piss and vinagar tonight to continue to write. I miss you so much that I don’t know how much more of this life I can take without you. Come and get me, please. I know you can…. so just come and do it. I can’t take being without you any longer. I can’t take not being able to tuck you in at night or kiss your sweet little lips. I miss you, Ro. I hope you are safe. Sweet dreams, my little Devil.

xoxo

Because this kid is truly awesome

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9 Comments

  1. Jess O

     /  September 25, 2011

    Maya….that picture rocks! I might steal it. You should write a book. Your blog inpires not only me, but so many people. You are a very strong woman, because I would stay in bed…..but you go out there and fake it. don’t know how you do it. big hugs girl!!

    Reply
  2. I remember wanting to never wake up again. Most importantly…is that I remember…meaning that I am still here. Every night I say a little prayer hoping my daughter hears me but sometimes, I am not sure. It’s a truly lonely feeling. <3

    I think of you during my (now termed) "Inferno Runs." It's a weird feeling to run with a broken heart, isn't it? It's like the blood keeps filling and there nothing but a gaping hold in your chest.

    Reply
  3. When I was new to my grief it realy pissed me off whenever somone further down the road would say how they were happy now and life goes on etc etc. Because it is just so unbearable at first, so very, very painful.

    I am four years out now. First off, that fact itself makes me mad because how could so much time have gone by without my little boy, and further my little boy would be not so little now if he were alive…ugh…

    The thing is after a while I got accustomed to not having him as part of my daily routine. Accustomed does not mean it doesn’t hurt it just is that every single little task and little moment of every day does not remind me that he isn’t here. I really liken losing a child to chronic pain. It is there, every single day, it does not go away and it is not going away. You learn how to cope with it and most days you do better but some days the pain is so bad it knocks you down. As years go by I can cope with that pain better. I can cut through the boys section at Target without panicking but I still curse to myself when I do it.

    You are not alone and keep on hanging in there – that is all you can do is hang in there. That’s fine for now.

    Reply
  4. Maya~

    It has been awhile since I have commented but I had a dream last night and you were in it..I promise I’m not some crazy stalker, I’m just a mom..a mom who’s heart breaks for you. I agree it was odd because we have never met face to face yet for me it was so real. We were at some type of beach and all the kids were playing. I recognized your face from all the pictures on the blog and proceeded to introduce myself to you. I told you how I have been reading your blog since the beginning and how my heart continues to break for you and your beautiful family. I told you how your recent list “the list” of how to live my life to the fullest spoke volumes to me. We continued to chat awhile as if we were old friends and you told me these words “your life is boring”!! Although it sounds kind of humorous (I even laughed out loud), it has so much meaning. You were so right!! I don’t want to bore you with details but because of some recent disappointments in my own life I have been kind of in a dark place for awhile. Today I have realized that I have no reason to stay in this place any longer. I have to re-count my blessings and like you told me in the dream “live every minute to the fullest”. It’s time to face the music and put on my “fake it till you make it” face on!! Things may be tough but not nearly as tough as the life you and all the others who have to deal with the demon aka Cancer are living. I am only sharing this to let you know how truly inspiring you are..SERIOUSLY although this is probably nothing more then mumbo jumbo to you and I know it doesn’t help with the pain you have to endure..I want you to know I think about your family and Ronan daily!! My dreams have always spoke volumes and I know I had this dream for a reason. So today instead of sitting on the “pitty pot” I’m going to get off my ass, dust the cobwebs off of the jogging stroller and take my daughter for a run. Thank you Maya. Thank you for your daily reminders of how precious our life on this earth is. Thank you for not holding anything back when you write, and most importantly thank you for vowing to change the outcome of childhood cancer. I am Forever a Mafia Member….and I KNOW you are going to make your beautiful Ronan so proud!!!!! I pray today that you find some peace and you are able to see some small slivers of happiness.

    Love,

    Nichole

    Reply
  5. Jera

     /  September 26, 2011

    Susan rocks too! I love you Maya. I hate being fake too, but sometimes we just make it. I am doing the work you asked everyday for my little Bekkem. I try so hard not to be negative or bitter. But everyone involved hears about Ronan and gets to see both my bracelets.

    Reply
  6. Michelle

     /  September 26, 2011

    Maya, I hate to bother you but I have a really important question : where did this kid get that unicorn bike???? That is one of the cooolest things I have ever seen! Love it!

    Reply
  7. Glenda

     /  September 26, 2011

    Maya,

    My heart gets so heavy when I read about days like this. It aches for you and Rockstar Ro!

    Baby steps… peace and strength… sending you mama bear hugs… xo

    Reply
  8. You know, one thing to be proud of Maya, is at least you are aware of it all. You are aware that you have all this stuff to live for, all this to fight for, but unfortunately part of you is gone forever. I don’t know first hand but from research and other’s comments, it’s obviously you will never be whole again. It’s obvious the pain won’t go away. It’s just a matter of learning a new life, a new way to live.
    One thing I continuously give you props for is you haven’t succumbed to an addiction. You haven’t become a mom who drinks every night, who stays in bed and ignores the things you have to do. You may not enjoy every moment of every day but you sure as hell fake it better than most can.
    I know this is of no comfort to you, but to think that you DID help another mama, another kiddo feel a bit better, that is such a huge thing to be able to do. I am so impressed with every post I read, every thing you do. I can’t imagine how you do it, but you do.

    AND I was thinking, how about we make the foundation official, and instead of an office, we have a house. With a couple big beds, tvs, etc…and that’s where we have a meetings, our epiphanies, our planning brainstorms. We can have a couple runs a day, to balance out the laying around. Maybe even have a quick break of sit-ups, push-ups and jumping jacks. Or we can do the INSANITY workout video for a quick 40 mins. Then cool off, get back in those jammies and back into bed. (Okay Okay maybe that won’t work all the time but it sounds like a good plan to me…)

    Reply
  9. Jaime H.

     /  September 26, 2011

    I hope today is the start of a better week for you Maya. I’m so sorry for all of your sadness and hurt :( xoxo

    Reply

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