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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9 thoughts on “A painfully gracefully clumsily beautiful existence

  1. Ali Barnes

    I think one of the reasons I love Taylor so much is because I can relate in some way to every single one of her songs. And a lot of them remind me of you and Ro, like ‘Ours’. I can’t wait to see what you have planned for his birthday – I’m sure it will be amazing because you and Ro together are an unstoppable force, and with such amazing people like Rita and JoRo (thank Ro for JoRo!!!) you truly can achieve anything. Recently a mother who comes into my workplace had a stillbirth and when I saw her for the first time after I told her out terribly sorry I was for her loss…she just crumbled in front of me and I felt so awful for her. I truly hope she has found some like Dr JoRo to guide her through this.

  2. amourningmom

    It make me so happy that PCH said yes and is going to help with Ronan’s birthday event. Sometimes the world without my sons seems like such a dark place but reading your words gives me hope too. Thank you. xoxo

  3. Laura

    Sounds like an amazing day and evening. Can not wait to hear what excitement is in store for Ronan’s birthday. So proud of you and the growth you have had this past year. All of our love and thoughts to you and your entire family.

  4. Becky

    Beautifully written about pain, greif and beauty. So eloquent and heartbreaking. I see/feel it too. Just not as deeply as you. I think only a person who’s gone through a tragedy like you can see the world fully in that way.

  5. Liz

    I have followed your love story since last April, and I think I have only commented one or two times, but I feel compelled to reply tonight. One thing I love and respect about you is your brutal honesty and your raw passion. You tell it how it is, not how everyone else thinks it should be, and for that, your are a better person than many of us. For a very long time, I have tried to be that person who says the things that others want to hear so as to not rock the boat. But I have learned from you and Ro that it is okay to rock the boat, in fact it’s pretty acceptable to capsize that shit if it means being real! And for that, I am so grateful. It has helped me to be the wife I know I am capable of being and the mom I have always wanted to be. The most amazing thing is you don’t try to be any of these things, you just are! And I know where you stand on the whole God issue, and I respect you for it. That is the beauty of LOVE…you don’t have to agree with it, but you just have to support it. And no matter what you are feeling, I support you and always have and always will. My beliefs don’t give me the right to judge you, nor does it give the right to anyone else. So you just do you, like only you know how, and those who have always believed in you and Ro will always continue to do so. And for those who don’t, well they can fuck right off, because there are still the rest of us who will continue to spread the RoLove and tell your story and do whatever we can to tell cancer to go fuck itself! I am running another half marathon next month, and I will do so in Ro’s honor again. You and he are what make me never stop moving, never stop reaching, and never stop believing! I am sending lots of love and prayers your way tonight and hope you always remember that you are special and wonderful simply because you are Ro’s mama! You are changing the world one baby step at a time, and it is such an honor to be along for the RoRide!!!!!

  6. Melissa

    Maya,
    Thank you for continuing to share your journey with us. Your words are so powerful–so beautiful, and so so painful. The beauty pain thing makes PERFECT sense. It is why with EVERY post I smile and cry EVERY time. I hope you feel the love and support that so many of us are sending each and every day. Looking forward to helping you celebrate Ro’s birthday in any way possible. May you hear more ABSOLUTELY’s in the coming months as your awesome, amazing ideas fall into place! Go Ro–your giant Rockstar!

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