Tag: Ezra

Quinn Does Not Have Brain Cancer and I Am Not Dying

Ronan. Quinn does not have brain cancer. Thank you for that. He just suffers from migraines, like your daddy. Brain cancer worries to rest. For now. It was a busy weekend. I spent most of it, hanging out with your brothers. They had a basketball game on Saturday. I felt so proud, watching them. Basketball has become therapeutic to them. Your daddy spends so much time, practicing with them. It’s showing on the court for sure. They are strong, fast, and aggressive. You heard me right. Aggressive. This coming from the two most gentle giants, to walk this earth. As their mama, watching this fire that burns within them on the basketball court, makes me so proud. I know it comes from you. I love watching them play. I hate how my eyes wander over to the other side of the court to where the 5 and 6 year olds are playing. I always picture you out there. You would have been the best player, rocking your Nike headband for sure. I told them after their game, how proud I was. I told them how much you would have loved watching them play and how you would have been yelling and screaming for them. The not having your little squeaky screams around, will always destroy me. Always.

I was tired Saturday, after being out for most of the day. I had a date night with Liam and your daddy took Quinn to the ASU football game. Liam and I cuddled on the couch and watched a movie. It’s still hard for me to sit still and just watch a movie. I did it for Liam. I made him a pizza and popcorn. I may have burnt the pizza, but he didn’t mind. He was just happy to have me cook it for him. On Sunday, we had a nice little treat. Our friends, Robyn and Kyle, flew in for the night. Kyle asked Robyn, if she could go anywhere for one night, where would she want to go? She said to see me. I was over the moon about the two of them, coming to visit. They got in Sunday afternoon and we spent the day just hanging out and lying low. Your daddy and Kyle did a lot of guitar playing and singing. Robyn and I did a lot of trying to find me something to wear for The Gold Party (I still having nothing to wear because I refuse to spend an insane amount of money on a dress!) and talking about you and Ezra. I hate that she gets this in what seems to be the exact same way that I get this; but I love this too. I don’t feel so alone when I am around her. I swear to you, she knows my pain almost exactly. She loved Ezra, that much. She knows her perfect life will never exist again, because her perfect life was when Ezra was here. I know that, too. We feel a lot of the same dark things that I don’t really want to share on here. I can go to the darkest of the dark places with Robyn and not be scared that I am being judged or criticized. She is one of the few people I can do this with and it’s all because cancer killed her fucking kid, too. Fuckwad asshole that cancer is.

I took her on a night hike with Kassie and your brothers. I huffed and puffed all the way up the fucking mountain. Robyn laughed at me and the way I had to have my hands on the side of my hips, so I could keep my balance. It is a lot of work carrying a Poppy in my belly. My inner insane workout goddess is not happy, but what’s a girl to do? I can’t do much, so I continued to huff and puff up to the top of the mountain until we arrived at our church. It was dark, quiet and peaceful. We did our little list of the things we were grateful for. Robyn said lists like that were hard for her. They are always hard for me. I made your brothers do one, too. I told them we couldn’t leave the mountain until it was done. They said some cute things. Things 9 year olds should say. Quinn’s last one was he was grateful for his health. That got to me, in a good way and a sad way. I was proud of him for saying his health but it also made me fucking pissed at the world that I know he only knows this, due to you dying. We got down the mountain, in the dark. I didn’t fall. Yay, me. Poppy wouldn’t have been to pleased about that one. We came home and your daddy and Kyle had cooked us all dinner. We gathered around like the unconventional family we are, but nothing has ever felt so much like family since you’ve been gone. Kyle had your brothers in stitches. Kassie just looked like an angel. Robyn just feels like home. Your daddy makes everything safe. Liam and Quinn, remind me of you. Our kitchen table was filled with laugher, pain, sadness, and beauty… all in a very safe, yet dark world that we exist in. I have decided I don’t really feel like I live anymore, Ronan. I exist if anything. I can get by, existing and working the rest of my life to exist in a really, really, really good way. By helping others and opening my heart to these beautiful people, that I am so lucky to know. So lucky for being so unlucky. Talk about ironic.

Robyn and Kyle left today. I was sad to see them go but so glad that they came. My phone rang from my OBGY’s office. I didn’t pick up, on purpose. I had blood work done there last week. I knew they were calling to tell me I had some deadly disease or that Poppy is dying. I listened to the voicemail and called back. My heart was racing. I waited to talk to someone. I was preparing myself, for the worst like I always do with every situation now. I had the talk in my head with Liam and Quinn about how I was dying or how Poppy could not be born. This is automatically where my mind goes and I’m not proud of it but it is not anything I can control. I think I was about ready to hyperventilate on the phone when the lady came on to tell me everything came back fine, except my thyroid looked off. “What do you mean, I’m not dying and Poppy’s not dying!” I wanted to scream. Surely something bigger had to be wrong? Surely the other shoe was going to drop, right?? Not today, Ronan. Not today. Not even today when my very special friend had her very hard surgery. One she thought she might die from. I told her I had talked to you, and she would not be dying. I was right. Everything went great. Thank you for that. You know I could not survive, without her.

I’m going to go now. I’m tired, but what’s new. Seems to be a theme around here. This Poppy pregnancy is for the birds. But I will try to be grateful for this gift that is growing inside of me. I am grateful, Ronan. Don’t get me wrong. I am grateful, but it is a lot harder than I had anticipated. I wasn’t mentally prepared for all the grief that was going to consume me, too. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xxoo

Tomorrow, we dance.

Ronan. Tonight, I am left speechless with all the things you are doing. Let’s just say it was a day full of shock, tears, screaming, hugging, and silence to process all that has been happening. There are no words to describe all the beauty that you are leaving behind.

Tomorrow, would have been your little buddy, Ezra’s fourth birthday had Neuroblastoma not killed him. Tomorrow, his mama should be throwing a party, not wiping away her tears over her son that she misses so much. We’ve been texting back and forth a bit today. I asked her what she will do tomorrow. She said, “Tomorrow, I will dance.” Erza loved to dance, just like you. You two sound so similar.

I’m going to ask a favor of all you little lovely readers tonight. Tomorrow, please stop and take the time to be thankful for all that you have, and dance while doing so. For Ezra.

This is all I can write tonight as it was a super long day in the best way possible. Probably the best day I have had in such a long time. Thank you, Ronan for your soul which is changing this world. I’ll dance for you tomorrow, to one of your favorites… Kelis….”My milkshake brings all the boys to the yard.” Or Kanye, ” Can’t tell me nothing.” And of course a little Taylor Swift, too.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

“Hello, Poppy!” (only to be said in a British accent) Thank you, Ro, for bringing us all this gift. I miss you so much. You are going to make the best big brother. xoxo

An L.A. Adventure

Ronan. Hi. Where are you? How are you not here, snuggling with me? Somedays, I can hang out in your room and not even cry. I then think to myself, what is wrong with you? How can you be in here, and not have a full on breakdown? The love of your life is dead and he is never coming back. You are in his room with all of his things and you can sit in here, and be alright with this? Is life moving on for you, too? The way is has for everyone else? Somedays it feels this way and it is like nails on chalkboard. I don’t want my life to move on. I don’t want my life to be alright without you. That to me is so wrong. But what choice do I have? I have to have alright days once in a while in order to survive this, right? I deserve to have alright days, too. I still hate them, but I manage to get through them. Somedays I even laugh and smile. Not often, but I don’t seem to cry as much anymore. I used to cry, every single day, 10 times a day. Now the crying is less. It is not because I miss you any less but maybe because I am just so used to this pain, that I am living with it a little better.

Your daddy and I had a trip planned to L.A. this week to go to a fundraiser of some friends of ours. Our week was super busy and your daddy has been slammed at work. I have been so exhausted that I have been trying to keep up with things, but all I can really seem to do, is sleep. Your daddy looked at me on Tuesday night and said, “You sure you’re up for this? The drive to L.A. for this quick trip?” I thought about it for a few minutes. I told him I didn’t care how tired or how much I was throwing up. We were going. That our friends were counting on us and we were not going to let them down. I may have thrown in plus, “Robyn bought all this really cool stuff, to do our nails with.” He looked at me, smiled and said alright. We left Wednesday evening at 9:30 p.m. Your daddy was writing motions at his office up until then. We hopped in  his car and I let him drive us for 4 hours, after he had worked about 40 hours in 3 days. It was around 1 in the morning when he finally looked at me and said, “It’s 1 a.m. we’ve still got two hours ahead of us. Let’s find a hotel and stay the night.” This was not part of our plan. “No hotel,” I said. “Pull over, I’ll drive.” “Maya, you are pregnant and tired. You are not driving.” I, of course argued with him. “I am totally fine. If I get tired, I promise I’ll tell you.” He pulled over. Into the drivers seat I went, with the music happily blaring. I love long road trips. They always give me a lot of time to think. And think I did.

I got us to Charisma’s house around 3 a.m. I looked at your daddy and said, “Please don’t try to talk me out of doing something, ever again. We are here, safe and sound.” Charisma is away shooting her T.V. show and was sweet enough to let us stay at her place, which just happened to be about 5 minutes away from the venue of the event we were going to. We crashed out pretty hard until 9 a.m. that next day. Dr. Sholler flew into town on the day of the event, that Thursday, and we picked her up at the airport. It’s always a treat to spend time with her. We spend much of the evening, catching up with her and everything that we/she has going on. You know the question I asked her, of course. How could I not?

“You know what I’m going to ask you. What if this baby, has Neuroblastoma as well. I am so scared about that.”

She looked at me in that thoughtful way that she always does. I could literally see her thinking, before speaking, which is something that means so much to me.

“Maya. This baby is not going to have Neuroblastoma. That is unheard of. But I know what you are thinking… that lighting has already struck once. I understand your thought process, but I am telling you, this baby is going to be fine.

I was trying my hardest not to throw my head down on the table and cry. I let myself trust in her words. I cannot believe she never had the chance to meet you are help you. She would have been our best shot at this beast. I know this with all of my heart. That woman has something so different about her, that I will spend the rest of my life supporting her, helping her, and making all of her dreams come true. I know she is going to be the one, to fix this disease. I can feel it in my bones. I believe with my whole heart that she is truly in this, to cure these kids. This is not about money to her. This is not about anything other then her wanting to save these kids. She cares so much. You would not have been just another lab rat to her. You would not have died in the name of research with her. You would not have been just another number and we would not have been tossed out on the streets, to never been checked on again. Fucking assholes.

We went to the event to support our friends. They did an awesome job and I am so proud of them. We are all in this, together. That’s how things will get done. That’s how things will change. It was hard for me to be at this event, I won’t lie. I spent a lot of the night, wiping away the tears. I wished this wasn’t Robyn and Kyle’s story, as much as I wish it wasn’t ours. They are hands down, one of the most amazing couples I’ve ever met in my life. We share a special awful bond that nobody should ever share. They will be our forever friends and you and Ezra, are going to help us do amazing things. I know this, no matter how many people doubt me. No matter how many people tell me, I’m crazy, this can’t be done, it’s too hard. It can be done and it will be done. You fucking died. Kids are fucking dying everyday from childhood cancer. You fought with everything you had to stay here. So, please, tell me again how nothing will change how this world is too hard to fix how nobody will believe in this or trust this or can do this. Tell me that again and I will say to you what I tell myself over and over and over every single day. I have to live every single day without Ronan. If I can do that, I can achieve anything I set my mind to. I know what I am doing. I have a very specific plan and it will get done. I can change this world. It will change. If you knew my son, you would know this, too. I believe in the power of our love. It is the power of our love, that keeps me from doubting anything, Ronan. A love so powerful that the unthinkable can and will be done. I know this in my heart. I know this in my soul. I know this with everything I am.

We drove home Friday just in time to meet some people for dinner at Chelsea’s Kitchen. Some wonderful people who share our same thoughts and visions. Some wonderful people who believe in you and this cause, as much as I do. That’s all I need, Ro. Is people that believe. I spent much of the evening going over our master plan. I spent much of the evening, listening to the advice and help that I so desperately need. I spent much of the evening, feeling thankful for the people that you are putting in our path. I don’t believe in coincidences. This is all you, working away with only the BEST people to help us on this adventure of ours. Thank you for that.

I love you. I miss you. I hope you are safe. G’nite my spicy monkey boy.

xoxo

Meet our friend, Ezra.

If you are in L.A. and want to go to a great event, here is one coming up. Though this shitty ass world, we have come to know some amazing people. Our friends, Kyle and Robyn, are having an event in L.A. and Woody and I will be attending to show our love and support.  They have been through so much and are living the same nightmare, right here with us. I am so proud of them for all they are doing to make this world a better place. I hope to see you there!

http://becauseofezra.org/blog/2012/04/07/1st-annual-karaoke-for-kids-august-23rd-sls-hotel-in-la/