I hate you, August 12th


Ronan. Is it August 12th yet? The day of your diagnoses? I’ll never forget that day. I can remember every single detail, so vividly. I remember sitting in the ER with you, waiting to get your CT scan. You were so mad at all the doctors and you wouldn’t let anyone touch you, until Dr. Katie came in. She was your saving grace and had such a way with you. She loved you so much right from the start. I would have never imagined this is where I would be sitting a year from now, writing to you, my baby boy who is no longer here. I remember sitting in the dark hospital room with you as the CT scan results came back and your daddy went out in the hallway so Dr. Cassidy could show him what they read. I remember waiting with you and thinking, it just has to be nothing. This is a fluke. It is something simple they can fix. I’ll never forget the look on your daddy’s face, like a deer in headlights, when he came storming in the hospital room and grabbed me tightly and just sobbed, “It’s his brain, there is something on his brain.” I looked at him and said, “So what. We can fix it.” I then ran out of the room so Dr. Cassidy could show me the films. I remember looking at them and then at him. I straight out said to him, “But he’s going to be fine, right?” He replied, “Yes.” Bless that mans heart. He had no idea what we were up against because at this point we didn’t know it was Neuroblastoma. We didn’t find that out until the next day, when you had your MRI. August 12th. At this time exact time, last year, you were probably in the middle of your CT scan. Within hours, our lives would be turned upside down in the blink of an eye.

We had your MRI the next day. I’ll never forget waiting in the hallway, clutching on to you for dear life. I was so scared. Dr. Maze just happened to be walking around the corner and could not resist your big blue eyes. He looked at me and asked what was wrong. I told him I didn’t know yet, but you had something on your brain and we were waiting for and MRI. He asked who was doing your Anesthesiology and I told him I had not a clue. He said it didn’t matter, because you were his now, that he would take care of you. I trusted him instantly and knew you would be in the best hands. You always were with him. He took such good care of you and loved you so much. You loved him just as much back.

I had Tricia with me when we got the news that your results from your MRI had come back. You had Stage 4 Neuroblastoma and they had found the main source in your abdomen. I remember Dr. Wood came into the room to tell us the news and I pretty much fainted and fell to the floor. I had never heard of Neuroblastoma in my life, but I knew Stage 4 of anything was bad. Very bad. Dr. Wood basically told us we had 24 hours to make a decision as far as what route we wanted to go with treatment. I’ve never felt so scared and helpless in my life. We were given nothing. No resources, no guidance, we had no clue what the fuck we were up against. We were running on empty as we had been up for 24 hours and yet here we were, deciding the fate of our child at midnight in the middle of a cafeteria with Trish, Max, E.J. and Karen. WTF. Looking back now, when you are just told your child has cancer, you should not be thrown out to a pack of wolves like we were. They should have packets available about what exactly your child has, who the experts are, phone numbers, the best hospitals, etc….. We had to sit up for hours researching all of this, scared shitless, with no sleep, and not knowing what the hell we were doing. And we are smart, educated people. I got really upset about this today. What about the families that go in there and have nothing. Nobody to help them, no support, no anything. Yet, they have to make a decision too. It just seems like more resources should be available to the families that are just handed this life changing and possibly death sentence. It would make things a lot less stressful.

I’m going to research this a little more. Maybe this is another one of my baby steps. Helping other families by making packets available to them with the type of cancer their child has just been diagnosed with. It cannot be that hard to get this done. Hey, I think I found my project for next week! I’m sure I’ll have to get it approved through PCH first. But it seems like such a win win for everyone. Looking back that is one thing that I am really upset about. We had no clue what Neuroblastoma was, where the best hospitals were, who the best doctors were, but we had to make a decision in 24 hours. It was horrific.

Aug. 13th is the day they cut open my babies head to take out the small tumor above the left orbit of his eye. The doctors at Sloan said they would not have done this, that they would have just started chemo, ASAP, because anytime you cut open a person’s head, it is risky. We had no clue and just went with what PCH thought was best. It was totally traumatic for Ronan. After the surgery, which thankfully went really well, his head was wrapped up like a mummy. He was so pissed about this. After we got him settled down for the night, I remember sleeping at the bottom of his bed so I could keep my eye on him. Woody was on the couch and Ronan had finally fallen asleep. I dozed off for a bit and woke up, just knowing that something was wrong. Wrong indeed, was right. Little baby Ro, swollen baby Ro, had somehow managed to undo the mummy mask that was around his head and peel off all the big band aids as well. He was just sitting up in the dark, holding the bloody gauze while trying to feel his head. His eyes were almost swollen shut and he was so mad. I have no idea how he got all of that wrapping off himself, as it was on there good. I woke Woody up and he panicked right away and ran to get a doctor. We were worried about him getting on infection on his open wounds. We fixed him back up pretty quickly and just had to watch him 24/7 after that. Ah… my little guy. Such a trouble maker. I loved every second of it.

So here we are, Ro. Almost a year later and you’re not here anymore. This was not supposed to happen. You were supposed to be on your way to getting better, still fighting like crazy. Somebody else had different ideas though. I’ll never stop being mad at that somebody. The somebody who will answer me someday. I swear on my life. Nothing makes sense anymore in this life, in this world. You can’t make sense out of nonsense, I always say. I’m sorry it ended this way, Ro. You know I would give anything to have you back here with us. You know I would have traded you places in a heartbeat. You deserved to live your beautiful life with your beautiful brothers. They are becoming more and more like you everyday. More confident, “spicy,” funny, athletic, they seem to be channeling you inner fearlessness. I’m so proud of them. They amaze me more and more everyday.

Your daddy is at a concert tonight so it’s just me and your brothers. They are sleeping in my room. They must have told me 50 times tonight how much they love me. Quinn walked behind me all night asking for chores to help with. Liam told me to have the sweetest dreams ever. They love me so much. It made me feel good. Quinn saw me crying tonight and he just said his little usual, “You o.k. Mom?” I said,” Yes, I just miss Ro.” He said, “Me too,” as he snuggled up beside me. You have the best brothers, Ro. They are taking such good care of me, each other, your daddy and even still you. Quinn has to bring into his classroom 3 important things to him to share tomorrow about him and his life. He is taking a picture of you. It about broke my heart, but he is so proud of it. He loves you so much… you were his best friend. We all miss you so much, baby boy.

I’m going to get to sleep now. Boot camp in the a.m. I hope. Hoping I stay asleep until 5. Tired of waking up at 1 a.m. then 3 a.m. then 5 a.m. I’m so jealous of all the normal sleepers out there. UGH. Sweet dreams though!! Love you to the moon and back Ro. I hope you are safe.

xoxo

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39 thoughts on “I hate you, August 12th

  1. Glenda

    Maya,

    Thinking of you and Rockstar Ronan!
    My heart aches for you.
    I’m so glad that Liam & Quinn take care you!
    peace & strength
    XO

  2. Laura

    You are so right about the information. People are empowered when they have the knowledge to help make the right decisions. The Emily Center is right there, but the information does need to be handed to you even in the middle of the night when time is of the essence. Of course they aren’t going to tell you that you need to go elsewhere for the treatment.
    I’m glad you all made it through today. For a while you will remember where you were and at what stage everything was and how it was unfolding day by day. Our thoughts, love and prayers go out to your entire family.

  3. 3here1inheaven

    Big hugs to you. I’m only up right now (1:30) because I can’t sleep either. Can’t get memories out of my head, and like clockwork, I’ll be like this until late into next week. I hope you can sleep & make it to boot camp in the morning. I actually put my work out clothes on tonight so I can just get up & work out. I have a feeling I’ll look up at the clock & it will be 5:00 am, though, just like this morning. I’m going to try & sleep now. Take care of you. xoxo

  4. Maria

    Hi, you don´t know me, I am from Mexico, I first heard about Ronan about 7 months ago, I really admire you, you have such strength, I´ve been reading your blog ever since. I can´t imagine the pain you´ve been through. Ronan is an inspiration, you are an inspiration! He was such a great kid because you are a great mom. God bless you and your family and give you the strength and courage to keep on with your beautiful family.Ronan left all of us, even the people that don´t even know you ( like me ) a great lesson of courage and love. Love to read what you write, you are an inspiration.
    sorry for my english ( sorry if I wrote something that made you feel sad or upset )
    you have a LOVELY family!!
    God bless you!!

  5. Sally

    Oprah has an episode on tonight, and a couple lost ALL 3 of their small children in a car accident. If you can, you should look up this episode. It COULD be worse.

    1. allison

      Are you kidding me? Sally, really, were you impaired by alcohol or some kind of medication when you wrote this? I hope you have some kind of excuse, because this comment is completely clueless and devoid of compassion. Next time think about what you’re writing before you hit the “Send” button. For shame…

      1. Melissa Vendt

        Ditto…seriously…you ACTUALLY had this thought….and then let it leave your mouth. Honestly, I am in complete shock that someone would say or think something like this and would also think that it in ANY way might be comforting to a parent who has lost a CHILD. Maya, love, you can add this to the if you say it could be worse to me I will kick your teeth in list. Throw in some expletives, they are well deserved.

    2. Jamie

      Sally, ick! You do not belong here. Are you kidding me??? Who says that to a grieving mother? I am absolutely blown away and disgusted by your insensitivity and ugliness.

  6. Desiree

    Oh Maya… This post, your description of one year ago, made me feel sick to my stomach. And to think I’ve never even met you or your family… and what I just felt wasn’t even an ounce of the heartache you feel every single day, all day long… I just want you to know that we’re all still out here, reading, supporting, thinking, praying, learning, hoping, everything for you Maya!! Even those of us who read regularly, but don’t reply regularly, we are here sending you thoughts, love & support every day. I know that alone will never take away what you’re feeling/experienceing, but I hope it gives you a little tiny bit of comfort. (Especially after those horrible things Asshole Reader said to you!! That made me so angry, I was speechless. I’m so so sorry you have to deal with things like that during this traumatic time…) All of this is so wrong, it makes no sense. Ronan should be HERE on EARTH with you, not anywhere else. And I’m so so so sorry that he’s not. Keep going Maya, you are doing so well, you are so amazing, your boys & hubby are amazing!

  7. KT

    Mama Maya, thinking of you and your family
    today. I know you don’t want us to be sad, but
    this post made me cry. Every day something happens
    to me that reminds me of sweet Ro. Hugs to
    all of you today. xoxo 

  8. Christina

    I hope that you got some rest. I can’t imagine how you are feeling, I really just wanted to wish you a day of peace.

  9. Jaime Harris

    Those cancer packet’s are a great idea! I cannot imagine what that day must of been like for you all 😦 So glad you have your beautiful twin boys who love you so! Hope today Ronan makes you a little visit 🙂 God bless…xoxo

  10. Marion Moot Ridley

    As I read this post this morning after waking up with my coffee, i was struck dumb. Compleatly gut wrenched as a matter of fact. I have just started this journey with you before Ronan left us, and had NO IDEA of the date of his diagnosis. I have been trying to read some of the early blogs but with him gone it hurts so much (as I am sure you understand more than anyone) that I had to stop. I am not sure if you knew that I too have had a cancer battle. I found out in June 2009 that I had Squamis Cell Carsinoma on my tongue and in the lymphnodes of my neck. I will not bore you with all the details, but what struck me this morning is that August 12 2009 I was wheeled into surgery to remove a significate part of my tongue and have a neck disection. August 12th to me is the one day a year that I will always rememeber the horror of the true begining of a long battle for life. And I am humbled by the fact that you as well have to rememeber this day as a day that brings sadness. I am numb as I sit here, thankful in many ways for each day I have been given from that day to this, even the pain ridden ones. But now a bigger part of me wishes that I could some how trade them, and give your family the same gift that I have been given with my family. the gift of time with Ronan. My battle is long from over, but it wrenches my heart. Please know that I am thinking not only of myself today but of Ronan, and all of you today as well. Much love, and prayers, Marion (Moot) Ridley

  11. Anne

    American Idol winner Scotty McCreery’s first single ~ I love you this big. worth listening to ~ there is even a line that says “I love you to the moon and back” 🙂 I hope you enjoy it!

    popcrush.com/scotty-mccreery-i-love-you-this-big/

  12. allison

    Okay, so I’m writing to see if I might be able to offer you some practical help in getting those packets researched and assembled. I’m local-in your neighborhood- and my husband is a cancer survivor, so this offer is legit. If there’s one thing managing my husband’s cancer treatment taught me, it was that you must be informed and constantly advocate for your loved one to make sure they are getting what they need when they need it. Those packets are a great idea, Maya, and I’m a stay at home mom with a talent for research, so let me know if you would like another pair of hands and another brain to tackle this task.

    Allison

  13. Emily

    I remember this day too, you posted something on facebook about being MIA for a few days and I think you asked for prayers; I barely know you but I just remember a sick feeling in my stomach and an ache in my heart, I knew there was something terrible happening. It has forever changed my life as well, obviously not in the same ways it has changed yours, but I will always look at life’s little blips differently and not dwell so much on the stupid little things. What’s important now is having love, health, and my family near me…in the grand scheme of things, that’s all that really matters. Hang in there Maya, you’re doing a great job.

  14. Stephanie Vargas

    Hi! I hope you got some sleep. I love your pamphlet idea! My daughter was just diagnosed with a PTEN (tumor supressor) gene mutation. It would be wonderful for us to go home with something to read like that–we would know it was accurate & up to date (unlike the Internet)– as things (tumors) come up for her.

  15. Melissa

    The packets are a brilliant idea Maya! They would be so incredibly helpful to families that are in the situation you were unfortunately in. I would love to help you with these when you decide to get started on them! When you are ready for help, just ask. Hope you got some sleep and had a great bootcamp work out this morning. ❤

  16. ame durkin

    @ sally DID YOU JUST SAY IT COULD BE WORSE? It could be .. You can have an idiot commenting with no apparent filter on their mouth? WTF? Hey be grateful only one of your kids is dead? IS THAT WHAT YOU ARE SAYING? Some fucking people are either idiots or rude… Either way- shut the fuck up!… @ ronan’s mom… That is an amazing idea.. Go for it.. And let us know if we can help in anyway!

  17. Ame

    @ Sally DID YOU SERIOUSLY JUST SAY IT COULD BE WORSE??? Yeah- I guess you can have an ass basically say ” Hey Maya be happy only one of your children died” which is what you just did… WTF??? You , my dear idiot, are just about one of the most insensitive people I have ever seen… from now on keep your thoughts to yourself!

    @ Maya… that is an awesome idea.. and it needs to be done.. if we can help in any way please let us know!

  18. dawn

    Ame…I am with you. Man, do people not think before they comment? Seriously. Maya- can you block people from posting here?????
    I too love the flyer idea…there are so many things parents are thrown into and there are no resources. Please post if there is anything we can do.
    xoxoxoxo

  19. Tanya

    Love Ronan’s Day of Kindness and the flyer idea. I have already started paying it forward for the day and will continue throughout that day. I am also a graphic designer who would be more that happy to help you out with any of that if you need it!

  20. Amber

    WOW! Some people just completely amaze me. @Sally did you really just post that? Maybe you should try to do something nice for someone today instead of something mean and stupid like you just did. Maya I think your idea is perfect. I will be paying it forward all day. Thinking of you and your family…always ❤

  21. julie

    I have tears in my eyes for you. I lived thru a less horrible version of this and I am so sorry. I am still lving thru a less horrible version, anxiously and fearfully. And yes, there should be more embracing and less throwing you to the wolves. I have also thoguht that something should be done differently and I personally think PCH needs to rethink how they treat their patients. I found it horrible there.

    I wish you a sense of peace today. I love your idea for a day of kindness. I will do something today, and mark it down for next year too.

    Julie

  22. Jaime Harris

    I heard that son “Temporary Home” by Carrie Underwood today and thought of little Ronan. It’s a touching song full of meaning. I just wanted to tell you that 🙂 Many things in my normal day remind me of his little face and I always remember to say a pray for you and Woody. Hang in there girl! xoxo

  23. Melissa Vendt

    What an amazing idea, Maya. While I am sure you will always second guess your decisions, it is my deepest hope that you will not be too hard on yourself and that you will trust you did ALL you could possibly do. It is so clear that you would have gone to the ENDS of the EARTH for your precious Ronan. He knows that, Maya…he does. He knows and feels your love each and every day too. Love to you and your family, mama!

  24. Susan

    I love all your stories about Ronan. All of them are so beautifully descriptive, even the painful ones. He is alive for me through your words. You have found a way to perpetuate his life and his spirit in spite of his short time on this earth. You have such an fiery passion that captures fleeting moments and breaks them down into emotions, colors, senses, perspectives, and just plain honest human reactions.

    Please keep writing about him, for all of us, but especially for yourself. I hope one day it will bring you peace.

  25. K.M

    This really is total bullshit! I truly felt in my heart like so many others that your Ro would beat this. I don’t blame you for wanting to blame somebody because I want to also. Reading your blog since September I would have bet 100 % Ro would be the one who made it. I wish I knew why or for what reason he didn’t, when he had
    so many people hoping & praying for him. Not to mention he had the strength of a Jedi! I’ve never seen (ok Ive never met him but so feel like I know him) such a beautiful, strong child who had the mental capacity to go through everything he
    had to endure and did it with such grace and
    poise. Even when he was spicy, the boy had a
    grace about him that most 3 year olds just don’t have, Ro was most definintely an old soul in a beautiful young body. I’m so thankful everyday that you write this blog. It truly gives me so much insight and makes me appreciate my little ones that much more. I almost hate to say that to you be because you should not have had to endure losing your baby so all of us readers could appreciate what we have. Ro will NEVER be forgotten by anyone that has heard his story. I constantly read & hear about him everywhere. I hope that gives you even an ounce of peace. He is truly one of a kind and through you I have no doubt he will change the childhood cancer, FOREVER!
    Love You Maya

  26. Meredith

    Hi Maya,

    I’ve never doubted that you’d make a difference…that Ronan’s legacy would travel far and wide. I know you’ll raise money, educate, and more.

    But—This idea of educating others when first given a diagnosis of childhood cancer–I think it is ??? I can’t find the word. Needed? Brilliant? A no-brainer!? Think of all the families you would help. Not only would they find some peace in knowing where to start, but it could certainly help them along in their treatment.

    You used the words ‘baby steps’ and I agree. It sounds like something that you could spend a week on. Then, stop and ask if it’s something you’re able to pursue. It might be some ‘busywork’…Compiling info–maybe even on a site of its own. You said you’d have to get it approved, but couldn’t you also start your own website JUST for parents in this boat–with info that would be helpful? Sure, it would be ideal to create pamphlets or folders to be handed WHILE receiving a horrible diagnosis–and you should fight for this!–but a site that people could turn to would also be helpful I would think. And it would allow you to start this task right away, without first getting tied up in yellow tape.

    I’m just rambling now, but this idea felt like a lightbulb idea for me…one that could be so important to so many people, as well as something manageable for you at this point in time.

    Wishing you peace today,
    Meredith

    PS. I missed yesterday’s post, so today I will spread the kindness. 🙂

  27. Rose

    I don’t know if you’ll get this reply because it’s a post from a few days ago. But I wanted to tell you this- Ronan’s black eye from his craniotomy reminded me of my pictures. I had a similiar black eye from a tumor removal and they had to cut my eye orbit to get to it as well. I had that same big black eye. What I wanted to share is that even as an adult, the first thing I really wanted when I awoke in a place that was cold and unfamiliar, was comfort from my parents, especially my mom. Both my parents are gone (from cancer) but I’ll never forget when I saw my mother-in-law. I hadn’t shed one tear until I saw her. Something so incredible about mothers. There’s such an overwhelming feeling of safety there. I guess because you do know they’d go the moon and back any second of any day for you. I think of Ronan feeling safe and secure with you by his side. There’s really nothing better in the world. That love. That connection.

  28. Megan Rodriguez

    Maya, thinking of you these last few days as always, but maybe a little more than usual. I am sick beyond words that you have to go through an anniversary like this, but I am so proud of you for finding the strength that Ro is sending you to turn it into something beautiful with Ronan’s Day of Kindness. I have so much faith in you and your ability to carry on Ro’s little life-force to make a difference for others in this world– those whose lives (like mine) that you have already transformed, and those who you and Ro will help via advocacy for the voiceless and frightened parents who are going through what you did. Much love to you Maya.

  29. beersincannes

    Hi Maya,
    I just have one question – what were the first symptoms you saw in Ronan? I am just curious what was the first thing you saw that made you take him to the doctor? I am terrified that something like this could happen to one of my children. Thinking of you and I will definitely participate in paying it forward! Hugs, Cate

  30. Kelly

    Great idea for cancer information packets. Also, I was inspired by Ronan’s day of kindness. I am now doing everything I can to help a family battling their sweet 4yr old boy’s medullo blastoma at PCH. He is in his 2nd week of radiation now after having brain surgery to remove the tumor. My 4yr old chose a bunch of books off his shelf to share with him. We got him Mater and McQueen toys, some treats for his Mommy (who is staying with him,) and we’re selling Jamba Juice fundraiser cards to help with medical bills. Thank you for sharing your story and inspiring us to pay it forward in Ronan’s sweet memory. It warms my soul to think we are helping someone in some small way who also faced similar “dear in the headlights “moments in the PCH ER waiting for scan results. Again….run with this packet idea. I’d love to help if you need. Ronan’s day of kindness. Love it.

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