I was never going to be ready for today.

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Ronan. I was not prepared for today. I was not ready for today. But today happened anyway. It started off pretty normal. A normal check up at Dr. Schwartz’s office. I didn’t even have to see her, I just had to sit in a chair for a good 45 minutes so Poppy’s heartbeat and movements could be monitored. Just routine stuff that I’m having to do, twice a week now. It’s always quiet in this room and it’s easy for me to relax and get lost in my thoughts. Today, I thought alright. Of course about you. I was sitting there listening to your sister’s heart beat and she seemed to be moving non stop the entire time. I know she doesn’t have much room and there, but she doesn’t seem to care. Her movements are strong and never seem to stop. I had a flashback to that time I was at Sloan with you. We were back in a room and they had you hooked up to a machine  where we had to listen and track your heart for a couple of hours. I remember being up on the bed with you, holding you and trying to keep you entertained. You soon fell asleep in my arms. The next thing I knew, I was laying there with you but I was silently crying. I remember I was so overcome with emotion over sitting there listening to your little heartbeat. It was the most beautiful sound I had ever heard and I knew how lucky I was that it was still beating. We didn’t know at this time that your cancer was spreading, but I was just so grateful for your little beating heart. I hated that you were strapped up to a monitor when you should have been just out and about playing like a normal, healthy 3-year-old but I found the beauty in our day, anyway. I’ll never forget that day with you. It sticks out in my mind all the time. Today, listening to your Poppy sister I was taken right back to that day and the tears seemed endless.

I got out of my doctor’s appointment after a couple of hours. They were way behind today and I came home for a sight that I was not ready for. Your daddy and I have talked for a couple of weeks about taking the furniture out of your room to have it refinished to the color that will match Poppy’s crib. I came home to your daddy who had informed me that the people refinishing your things, would be at our house to pick everything up in a few hours. This meant drawers had to be emptied, toys dumped out, clothes moved, stuffed animals pulled out from the storage area under you bed, etc…Your daddy asked if I could empty out your dresser. I started crying and simply just told him, “No.” He did it. He did most of it. By the time the people got to our house your little room had been completely torn apart and I could do nothing but sit on the couch and cry. The lady working with us could not have been sweeter as your daddy had explained our situation to her on the phone so she understood what was going on. She told me how she had some bad luck, too as she lost one of her sons at 17 and also one as an infant. I could hardly get two words out as I was trying my hardest to somewhat control my sobbing. Your daddy was the one who told her he was sorry and did the rest of the talking as I just sat there in a cry fest trance. Your little room that I’m pretty sure I had made up in my mind, would never be touched, has totally been taken apart. I know we are going to put your things back but it still does not make any of this easier.

I sat in your room for a long time today. On one of your mattresses. I sat on the phone and cried to the couple of people I talked to. Thanks, Meg and Stace. I told them both how I was staring at your side of the empty room where your bed once was but now the only thing left there were a few of your Star Wars guys that had clearly fallen off of your bed because you would always insist of sleeping with 50 of them. I texted with Fernanda a bit. She is going to come over tomorrow to help me figure out how we are going to put your room back together while making it Poppy friendly, too. I am lucky to have such good friends who are truly there for me at all times. I am so lucky in that regard and so thankful.

The past couple of days, my emotions have been building up. It was your Sparky’s birthday. I remember his birthday from a couple of years ago when we were in New York. You made me take an extra special picture of you to send to him just for his day. It’s one of my favorite pictures of you, even though your body was all marked up with a Sharpie Pen from your radiation and your little arm was hurting so badly that they tried to make you wear it in a sling which you of course refused to do. The smile on your face was priceless and your eyes were so bright and beautiful as I was taking this picture. They were shining like diamonds. You were so excited to take this picture and send it to him. We called to tell him, “Happy Birthday!!” and I remember you saying this in your squeaky little voice that was full of so much love and happiness. As always, I did my best to try not to be sad on his birthday but I wished more than anything that it was you sitting by my side as I watched your Sparkly open up our gift and two cards. One card from me and one from the both of us. I of course signed your name on the card I picked out from you, to him. You would have liked it and called the card, “cute.” I sat and watched your Sparkly read our words and open our gift. I watched as he chuckled at something while the corners of his eyes got wet. It’s a sight I’m so used to seeing with him. That bittersweet happiness that I know all too well.  I did my best on his day, for you but it was still hard to hold it together without you by my side. I know your Poppy sister will help with things like this when she makes her little entrance into the world. Maybe days like this will become easier and help with the sadness because the happiness I know she is going to make others feel is going to be infectious. Next year it will be nice to have her by my side on days like your Sparkly’s birthday.

I spent much of the day and evening crying. Today was a hard day to get through. I literally went to bed telling myself, “You made it through today and you didn’t die. The pain didn’t kill you.” I’m always so amazed that it doesn’t. The sick joke is I know what I’m waking up to tomorrow and how none of this ever goes away. I don’t get to escape this. I still have to wake up to your totally disassembled bedroom that I said I would never touch. I was never going to be ready for today. You can never be ready for something like this.

I’m tired but restless. Of course, I’m not sleeping well. It’s because of my not sleeping well at night that I’ve noticed that we have this fucking bird outside of our bedroom that seriously sings all day and all night long. I don’t understand this as it’s only something that has started a couple of months ago. What kind of bird, sings all night long? It’s annoying to me and I don’t feel like hearing it’s song. Tweety bird, tweety bird please shut up. Between that and your empty room I’m surprised I’m not outside stalking this bird with my BB gun. That is totally a very Maya Danger thing that would have happened last year when I was in my Danger Baby phase. I’ve been stalking this bird to try to find out where it is hiding but I’ve only been stalking from it from the inside of our house. My body is too tired to truly investigate. Stupid bird.

Time to go, little man. It’s late and I need to try to get a little sleep before I have to start today all over again, tomorrow.

I miss you. I love you. I hope you are safe.

xoxo

P.S. Thank you, Taylor for what you did tonight. You are such a light that keeps me going even on my hardest of days. I know Ronan is so proud of you for all you are doing. So am I. I love you.

 

Your Happy Birthday Sparkly smile. I love you.
Your Happy Birthday Sparkly smile. I love you.

A painfully gracefully clumsily beautiful existence

Ronan. I had a rough sleep last night. I think there was a lot of tossing/turning/punching pillows involved. It was 1:45 a.m. when I pretty much said FUCKTHISSHIT and popped an Ambien. Hate it. But sometimes the silence of nothingness is needed. More so than not lately. Nights have been more brutal than they normally are lately. Nights are when the cries from you to me and me to you, scream the loudest. Nights are never quiet.

I got up today, running on the little sleep I had gotten, but I had a lot to do. Too much to do so I went into tunnel vision to get everything done. Foundation things. I had a meeting at Phoenix Children’s Hospital that I needed to prep for too. Prepping came with basically giving myself a pep talk and telling myself how I would be brave today and talk about you, without sobbing like a baby. Prepping for today came with a lot of,”You can do this. For him. He would love this.” Rita met me down at PCH. I was waiting in the lobby for her, busying myself with doing things like cleaning out my purse. Busying myself with a lot of things to distract myself from crying. I don’t have a problem with being at PCH. I’m down there a lot still. I had a problem with the reason I was down there today. I didn’t want to be there, without you, asking for permission to do something for your birthday, and you are not even here to celebrate it. I wanted to be down there, with you holding my hand, doing something for your birthday and celebrating the fact that you were here and we together, wanting to do something nice at PCH because we were so lucky to still have you. I fought back my tears today and bravely did this without you. I sat in a conference room with Rita and clumsily/gracefully talked about your upcoming birthday and what it is, we would like to do, to honor you. I am used to hearing the word no a lot now. I am used to getting met by skeptical glances and it usually involves a… “Well if you want to do this, you have to check off this box and this box and this box, to have it done.” I am used to having to work/fight for everything in life. Today, none of that existed. I was met with a big fat, “We love this idea! We love everything about it. We will do whatever it is, you like. How can we help/what can we do/how would you like to see this idea, happen all the time in Ronan’s honor!” I was quite simply shocked. I think Rita almost fell over in her chair. This was not what either of us, was expecting. We left there stunned but smiling. We went for tacos afterwords and talked where we talked about your birthday and how we are going to execute the ideas that we have. We are going to make it a very special day for a lot of kids. I know it would make you smile and so happy.

After I left Rita, I drove to your brothers baseball game. I was feeling alright. I arrived to the game and just as I was sitting there, thinking about an email I was supposed to send today, in regards to an event I am trying to pull off for you in September, a little text message popped up on my phone. A little text message from the person I was going to email, but did not. I read it, sat with it, and the tears started pouring. I don’t want to go into details about what the text message said as it’s not important. I’ll sum it up with a little Taylor Swift lyric instead…one of my favorites. “Don’t you worry your pretty little mind, people throw rocks at things that shine.” I was crying for about 10 different reasons during that moment. 1) Because baseball games are hard in general. 2) Because I miss you. 3) Because this little text messaging person, blows my mind 4) Because I am so thankful that truly good people in the world, like her, exist 5) Because the stars are aligning, right before my very eyes 6) Because just when I start to doubt myself, this person always seems to know it and reminds me that she believes in me and you 7) Because I am so about letting things just come about/not push them and this was a huge reminder/sign to me to continue to do things, this way. There are a few more reasons for my tears, but I don’t want to go into them. Mostly it was just a huge fat thank you, Ronan. For reminding me that you are still here, working away during the times when I feel the most defeated. Or tired. I told your Sparkly eyes that I was just freaking tired of everything. I was quickly met with a, “So what? That’s bullshit. You’re tired? That means nothing.” He is one of the few people who I allow to slap me in the face and I don’t become defensive or feel offended. I am able to step back, assess the situation and say, “You are right. I am acting like an asshole and I need to knock this shit off.” I am learning to let myself take little breaks here and there, but I will never give up on you. I will work as hard as I can, to make some things in this mad world, right.

You know what else you are doing for me? Or should I say, this grief is doing for me? It’s making my heart bigger than ever. I did not know that was even possible, but it is. There are things now that I just cannot look away from. I want to save/help everybody. It’s helping others, that is saving me. Dr. JoRo told me this after a few times of seeing her. She talked about how my heart, would eventually start to turn outward again. I remember being in a fog, listening to her words, but not really understanding what she was saying. My heart would turn outward and grow bigger? Not possible. It is black, broken and shattered into a million pieces. I am starting to understand what she has told me, from the beginning. I’ve always believed her, but I think until now, I wasn’t truly ready to hear what it is, she was telling me. She is so freaking humble. I talked to her today. She is still on her trip and just found out she is getting some huge/really big deal award for being what I think should be called, “The Most Amazing Woman Alive on the Planet Award.” I listened to her talk about it like it was not really a big deal, even though it is. She would never come out and say that because that is just how she rolls. I tried to tell her it was a big deal, that she deserves this for everything she is doing. I was met with a, “Maya. That’s the thing. I’m not really doing anything except just being with you. Just holding your hand as you do this. All I am doing is sitting with you while you feel this, while you go through this, while you find your way.” I wiped the tears off of my cheeks. I told her that what she was doing, was walking through this with me in a way that nobody had done before. By truly listening. By speaking for me when I cannot, even if it’s not saying anything at all. By NEVER judging. By NEVER pushing. By NEVER expecting. By NEVER telling me I am doing this wrong. By NEVER lessening my pain. By never trying to numb my pain by shoving 10 different pills down my throat. By never saying, “Oh, I lost a child too, so I TOTALLY get it. By never telling me it’s time to get over this/move on. By never comparing her pain to mine. By NEVER using the words, “Well at least you have these things/people to get you through this. By never using the words, “You should be grateful for the things you do have.” By never telling me this gets easier. By never giving me false hope. By being brutally honest about how fucking awful this all is and she cannot fix it. She cannot fix it, but she will forever be here to watch me as I do, as I am the only one that can. And finally, by believing and me and trusting me, even when I do not believe or trust in myself. She always does. I know she always will too. She is one of my biggest reasons for continuing to fight as hard as I do. When I grow up, I want to be just like her;) She is beyond inspiring, Ronan. She reminds me a lot of you. She reminds me a lot of me, too. So much some days that I can see my pain, in her eyes. But the thing with her is it never hurts to look at her eyes, full of all of my pain. When I look into her eyes, I see a quiet strength that makes me feel the most at ease. It’s like I can breathe for a bit.

Guess what I did tonight? I did not get to hike today due to my busy day of getting shit done. I was quietly panicking in my head about it. I took Liam out tonight to grab a bag of ice for your daddy. It was dark. It was late. I drove the two of us, to our mountain. “Liam. I didn’t get to hike today, buddy. You want to go with me really fast?” I was met with an, “Ok mom. But I don’t have shoes.” I quickly told him no problem, that we could just go barefoot. He was so excited. “Good thing I have tough feet, mom.” Tears sprung to my eyes. “Yeah buddy. Good thing. I do too, so we will be alright.” We hiked, barefoot, in the dark together. He talked the entire time. We didn’t go to the top but that was not the point. We went as far as we could with bare feet/no flashlight like we didn’t have a care in the world. We bonded. We laughed. We missed you. It was a very sweet hike with a very sweet boy. I bawled like a baby over it and the fact that we were simply doing that crazy thing, because you are dead. If you were here, I would have never been on a mountain, holding Liam’s hand with bare feet and a broken heart. But I was. And I am. And I will continue to be for the rest of my life. This is just the way it is now. This is just the way it will always be. This grief/pain will never leave. I can’t have you anymore so this is what I am left with. A beautifully, painful life. I am noticing that the amount of beauty that I see in the world is endless but so is the amount of pain. They both seem to go hand in hand, everywhere I look. They are never without each other. It is as if they are best friends/worst enemies. You cannot have one, without the other. I wonder if other people notice this or if it is just a bereaved parent thing. I think my friend Rita sees it all the time, as well. Maybe this is one of the reasons I like her so much. That and she is funny as a mo fo. I cannot contain laugher/her snarky ways when I am around her, kill me. Like in an I almost pee my pants kind of way. Laughter truly is the best medicine. I need a lot of it. She is good at providing it. Plus, sometimes she makes me feel like I am being funny and making her laugh, too. So sometimes I feel like it’s just not a one way street;) YAY ME! I can still be kind of funny, when it comes out naturally. I only do this with the people I feel most comfortable around. It’s a weird introvert characteristic of mine.

Alright babydoll. Turing in for the night. Ambien I hate you but I have to sleep is here. G’nite baby doll. G’nite sweet friends. I miss you, Ro. I hope you are safe. I love you.

xoxo

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