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

Ro…. Inquiring minds want to know. Nailpolish color is by Debroah Lippman, the color is Happy Birthday. You would have freaked over it as it is so sparkly!!! I think of you everytime I wear it!!

Ronan. Do you know that I wait all day for this time at night with you?? It has become so special to me, that it is now a major part of what keeps me going through out the day. I wait for our time together, when everyone is asleep and it is just the two of us. I wait all day so I can finally sit here at night and write to you, take care of you, cry with you, and nurture you the only way that I get to now. I do this for myself, as much as I do it for you. It’s my time with you, alone, to sit with my thoughts and share them with you. It comes so naturally to me now that I am convinced that you can hear the words that I am saying to you. I so need you to hear them. I so need my time with you at the end of the night. The silence is just too loud.

I wrote to you last night, only to have it disappear. I’m not sure what I even said. I know I filled you in on what we have been doing to keep busy. But as I sit here and try to recall what that is, my mind draws a blank. I can’t even remember the day of the week, let alone what now goes on in a day. I can sit and tell you about today though. Even if it seems like everything that happened, was so long ago. The days are still dragging on and time is still standing still. The stupid sun is still rising, every morning and just makes me angry. I’ll tell you about today, before I forget. I took your brothers to Laguna for the day. We needed to get off the island and I wanted to see my friend, Denise, before we went back to Phoenix. We left this morning around 10 and spent the day with her. We met her at her brother’s house, which is unlike anything I have ever seen. It is filled with exotic things everywhere. You would have loved it. We spent a big part of the day, exploring her brother’s house and his love for snakes, frogs, lizards, fish, fossils, butterflies, trees, plants…. it’s like a mini zoo. Liam and Quinn had the best time and Denise did such an amazing job of explaining what everything was to them. It was a very educational day to say the least. We walked into town and had lunch overlooking the ocean. We got ice cream afterwords and sat on the beach, just enjoying the simpleness of the day. We walked back after a few hours and had a little adventure by the ocean shore as we navigated our way down a cliff, through the water, over rocks and back up some stairs; to reality. We said our goodbyes and I drove off feeling so happy for the beautiful day we had just had, but also so sad that I didn’t have you physically there with us. My heart was heavy. On the way home, we got stuck in traffic. Not a surprise, but it ended up taking us twice as long to get home. I would have usually been annoyed by this, but not today. Do you know what I did for the 2 hours that we were stuck in traffic? I talked. I talked to your brothers for so long that I probably turned blue in the face. I don’t know who this person was in the car today as you know I tend to keep my thoughts to myself. I tend to be on the quieter side as I like to think before I speak and it is as if I am always processing and analyzing the things I say. Today, on the car ride home, I did none of that. I let my worlds fly out of my mouth, and I engaged with your brothers in a way that I haven’t done in a very long time. It felt really good. I talked a lot about my childhood and told them a lot of stories. I told them how I had a lot of hard things happen in my life, but how I never felt sorry for myself. I told them the importance of appreciating everything that they have and how lucky they are. I told them they are lucky, Ronan. I still feel this way even though you are gone. How is that even possible?? I really can’t explain it, except for I am so much more grateful for the little things in life that they have now. Even with you being gone. You were the most precious gift to us.

I ran on the beach tonight. I took Liz with me as I am trying my best to turn her into a runner. Olivia stayed with your brothers. I pushed Liz for her mile that I have been having her to run. Baby steps for her. I ran ahead of her and marked a line in the sand for when she reached her mile cutoff. I had her turn around while I ran a few more miles and met up with her back on the boardwalk by our condo. It felt good tonight, running on the beach, with Liz by my side. We both had our headphones on and it felt good to get out of my head for a bit. I need that break so much now. It feels good to spend time with Liz and Olivia. Olivia brings out the innocence of being a child that I feel like we have all been robbed of. Liz reminds me of my younger 21-year-old self, back when life was simple but so complicated. I sit back and watch her and the lessons she is learning from all of this. I know it will make her a better person, if that is even possible. I’m actually not sure it is. Both of those girls are unlike anyone one else on this planet. I feel so lucky to have them in our lives. You loved them so much too.

I’m waiting now. Waiting for this Ambien to do it’s work and force me to drift off into my black wall of sleep. I remember nothing about my nights now. No dreams, not even falling asleep. I try not to get too concerned about this and my therapist agrees. We talked about this Ambien thing the other day. She said if I weren’t processing things during the day and during the time that I write to you at night, that it may be a different story. We both agreed that as of now, I need a break from all of this reality in the form of sleep. I hate it though. Never in my life have I had trouble sleeping. I now have to fight off the demons that live inside of my head as the night slowly creeps in. Your brothers are both in bed with me. They look so peaceful and beautiful. But it is so painful to not have you in here with us too. I can just picture you snuggled up beside us. That image lasts about 10 seconds before my mind automatically goes to you, lying in your bed at the Ryan House, as you were preparing for your last breaths. I watched as your little body gave out and your heart stopped beating. How quickly your little body turned still and cold and your lips, a soft shade of blue. I think about how I gave you a bath after you died, everyday. I remember I was so mad that I couldn’t get the sharpie pen off of your body from your radiation treatment the previous day. I wanted you to be perfectly clean, but I could not get the black sharpie off of your hips. I wanted to take a picture of you so badly, but just could not bring myself to do it. I have my last picture with you before you died and it is awful. You didn’t even look like the same little boy. You weren’t a little boy anymore. Your body, your face, your eyes….. everything had evolved into a man who would have been in his 90’s. That’s why you were so wise beyond your years, that’s why you loved me so much. I sometimes think you were really an old man trapped in a child’s body. It’s the only way I can fucking justify this bullshit. I think your spirit was so much older than the physical you and your spirit was ready to go on and move on to other things as you felt like you had done your job here. Now, I feel like you are really here, still watching over us, and showing your presence in different ways. If we ever have something good happen in our life again, I know it will be you who has made it happen, Ronan. You will be the one that we thank because you are now taking care of us. I’m o.k. with this, but I’m also fucking pissed about this. I wanted to be the one taking care of you, for the rest of my life. That was my job and I totally failed. I didn’t fail in loving you because you know how deeply connected our love was. I failed because you died. I don’t care what anyone says to try to tell me otherwise. I let you down. I promised you we would get you all better, that your daddy would coach your basketball team, that you would play on a baseball team, all the places we would take you and things we would do. I broke all of my promises to you. I hate myself everyday for this, Ro. I’ll never forgive myself.

I’m sleepy now baby. Time to close my eyes. Yoga in the morning. I hope you are safe, warm, and peaceful. Sweet dreams my favorite not spicy monkey boy. I love you to the moon and back.

xoxo