Welcome to hell

Can I even blog about today/tonight? I don’t know. It was that horrific. And I don’t mean to sound like a whiney baby… because it takes a lot to break me. But if I have to hear one more fucking “beep, beep” from the machine Ronan is hooked up too, and then wait 10 minutes for the nurses to fix it I’m going to crack. I’ve learned how to fix it myself. If I have to watch “Finding Nemo” on the lame T.V. one more time, I am going to crack. If I have to listen to Ronan yell and scream and hit me all day, I am going to crack. If I have to listen to our roomates blasting “Telemundo” one more night, I am going to punch someone. If I have to stand up and hold Ronan for 2 hours, because he won’t let me sit down, I am going to crack. If I have to have him stay up all night because he naps so much during the day, I am going to crack. I have just spent the past 6 hours in hell. He has been yelling, hitting, throwing things, and there is nothing I can do about it. Anybody who knows me, knows that I am one of the calmest people on the planet. But I am about to break. I have no idea how I am not huddled up in a dark corner somewhere, sobbing hysterically. I’m sure I’ll be there soon enough. I cannot take another day/night like a today but I have no choice because I am his mother. I find myself saying things in my head like, “How did I get here, this can’t be happening,  this cannot be my life.” But it is and I can’t escape it no matter how hard I try. Tonight, I seriously texted Woody and told him to please check me into a mental ward. How much can one person take? How much more of this before I seriously do go insane? I thought I was strong… but now I’m not so sure. This is all way too much on days like today. I want my loving, sweet, happy, baby boy back. I can’t take the anger and pain within him that he does not know how to deal with besides take it out on me. I cannot take not seeing Liam, Quinn, and Woody. I am completely alone in this and I know that. I am alone with my thoughts, feelings, pain, sadness because nobody can save me except myself. I am fighting and I am fighting hard, but nothing is easy. I cannot even find the strength to eat or sleep. Food has lost all appeal to me, I live off of coffee and water and gum. I ate lunch today for the first time in a few days and then threw it up later after having Ronan attack me for an hour. Too many details?? Sorry. It’s the truth and the truth hurts. I don’t want pity or sadness from anybody. I just want you to know what it is like to live the life of being the mother to a child who has cancer. I want this story to have an effect on people everywhere because NOBODY should have to go through this hell. Science and medicine are waaaaay too advanced to still be dealing with this bullshit. Where is all the funding for childhood cancer? Where is all the awareness? No child should should have to feel this pain and suffering. I will never understand why Ronan was chosen. I don’t care if the outcome is amazing when he does beat this. My child will just have walked from hell and back, and I right there with him, holding his hand and never letting go. So, is this heartbreaking enough? I hope so. Because something has to be done. I never get to look at Ronan anymore and feel happy and carefree. I now look at my son and see his innocence taken away and the anger in his eyes. The pain I feel from this I cannot even put into words. I will survive this. I have to survive this. Ronan knows I will never give up on him… he can hurt me over and over and I will take it because I have no choice.

This is all I can write tonight. I see a dark corner calling my name. Sweet dreams <3<3

Pink: One foot wrong

Am I sweating?

Or are these tears on my face?

Should I be hungry?

I can’t remember the last time that I ate.

Call someone

I need a friend to talk me down

But one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

Put one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me?

Just one foot wrong

You’ll have to love me

When I’m gone.

Does anyone see this?

Lucky me

I guess I’m the chosen one

Color and madness

First in line I put my money down

Some freedom

Is the tiniest cell it’s hell

But one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

Put one foot wrong

And I’m gonna fall

Somebody gets it

Somebody gets it

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me?

Just one foot wrong

You’ll have to love me

When I’m gone.

Some people find the beauty in all of this

I go straight to the dark side, the abyss

If it’s bad

Is it always my fault?

Or did somebody bring me down?

Or did somebody bring me down?

Did somebody bring me down

One foot wrong

I’m gonna fall

I put one foot wrong

And I’m gonna fall

Put one foot wrong

I’m gonna fall

Somebody gets it

Somebody gets it

Just one foot wrong

All the lights are on

But I’m in the dark

Who’s gonna find me

Who’s gonna find me

Just one foot wrong

You’ll love me

When I’m gone.

Have to love me when I’m gone

Love me when I’m gone

You’ll have to love me when I’m gone

You’ll have to love me when I’m gone

28 thoughts on “Welcome to hell”

  1. My heart literally breaks for you.
    I will never understand what you are going through, because (like you said) everything you feel is for you alone to feel. Everything I’ve studies for my paper tonight… scares me. It made me cry. It made my own heart hurt. And it gave me even more (if possible) respect for you. And more love for Ronan.
    Your family has touched my heart.
    Your family has had an impact on my life.. and I am glad to have found you. I am proud of my geekiness because it led me to follow Charisma, and she led me to Ronan, and he has given me more purpose.
    Please take care of yourself Mama.
    Take care of you, while you take care of him, and know… there ARE angels out there. And they ARE watching you and your ENTIRE family.
    All of my love and prayers to you <3
    ~Dawnie

  2. Maya for you I sing Gloria Gaynor’s song, I WILL survive…I am praying for peace even during this really hard time as I know kids sense our fear, joy and stress. Be blessed.

  3. Maya,

    You will get through this. I have been in the mental hospital 4 times because of my bipolar disorder. The last time this happened was 4 years ago. On top of all the bullshit I am going through and watching my darling daughter retch and retch for what seems like hours because of the chemo, her father has gone to court to try and take custody away from me because I am too mentally unstable to care for my daughter.

    I won’t even go into what a loser Kimi’s father is. He couldn’t even bother to show up at the ER the night I took her there (on his custody day because we were unable to reach him) because he “had to be at work early” the next day.

    I KNOW how exhausted you are. I KNOW how much you wish you could take on this cancer from your baby. How HELPLESS you feel because you can’t cure him. How HARD it is now that you can’t protect him from this.

    You are going through HELL. I have no idea what God’s plan is. Kimi asked me why God made cancer and I was floored. How the hell do you answer that question. Your precious son did not deserve this. You and your family did not deserve this. I know how hard it is to accept that your lives have been forever RUINED by this disease. No matter what happens in the future, you will NEVER get this time back. You will never forget the pain and the suffering you are all going through.

    It sounds like you need a good night’s sleep. Please find a friend or have your husband take over so that you can sleep for at least 8 hours. Take Tylenol PM or a sleeping pill if you need it. Please try to eat something. Remember the oxygen mask saying: You HAVE to take care of yourself in order to be able to take care of everyone else.

    YOU CAN DO THIS. You are SO STRONG. As tempting as the mental hospital sounds sometimes (and the mental hospital here is part of the same campus as the Children’s Hospital where Kimi is being treated), it is not the answer. It will be hard to have visits with your son. You will be locked up with a bunch of smelly, crazy people (and probably a few nice crazy people like I was) and they will medicate you and you won’t sleep well because your roommate will probably snore and everyone else is suicidal or hears voices and you have no privacy and sometimes the staff is mean to you.

    SO — keep yourself from going crazy and get some rest. Know that you are in so many people’s thoughts and prayers. YOU ARE NOT ALONE!

    With much love,
    Michiko

  4. We’re right here. Next to you. Just one floor down and just as crazy. We won’t back off or let you be. We’ll press you until you let us help. And we’ll let you help us.

    We’re all family now. It’s not fair. It’s not right. But we have each other. We can do it together.

    Love,
    Team Mia

  5. You are the only one strong enough to do this. Scream yell, get it all out! Then go back and hold that precious baby and implant your love on him. He knows you care but he is a frightened baby and has no clue what to do. Your calm unconditional love is what he must have right now. Hard on you, oh yes, hard on Ronan, oh yes! Love and your strength will carry both of you as you hold him close and whisper songs and prayers of love for him.

  6. Hey there Maya, You don’t know me and I don’t know you but I know people who love you and care for you very much, and I’ve been following your posts since the very beginning . After reading your most recent post, I was fired up and prepared to send you a “brutally honest” reply on getting a grip……but of course, being a mom of 4 boys (healthy at that) I could not bring myself to voice my thoughts after reading the post from Michiko. We’ve all heard the saying so many times but I’ll say it again…..”There, but for the grace of God, go I”.
    You are not alone! You have tremendous support! You have incredible friends and family, you have a husband who is involved and willing to do whatever it takes…..
    You are so young …..count your blessings!!!! You have so much fire and spirit within yourself….even though you feel absolutely depleted at the moment, (and I’m sure you will feel this way over & over again) hang in there! There are so many sad stories out there that will not help you at this point in time, and Ronan is so young that he can’t even express his fear/anger in an appropriate way, but he surely has the “warrior” spirit within!! Trust that that spirit is a gift from God even on the hideous days……it’s what will get him and your family through this devastating time and allow Ronan to be a beacon of light to others fighting a similar battle.

    Your family continues to be in my prayers,
    Jennifer

  7. Oh golly, some days are really truly royal pains in the ass!

    My story is different than yours, but cancer was still a part of it. I was a caretaker for my mother for 11 years as she fought thought breast cancer, bone and brain cancer….and I recall very vividly how I would rant and rave, and scream…why why why…how could this happen! And before THAT all happened with her, my father was floored with dementia from many strokes for 11 years. (…and yes, I don’t care much for the number 11 anymore).

    Some days suck more than others, but you get through them because of love. That will carry you.
    And you have a great family that is there with you, and good friends who really matter, and now…you have this very well written blog about your days and your precious son’s day….that you are so very generous to share with us.

    You are tired…worn to the bone. As others have commented…its good to just try to sleep if possible. Renew. I also agree with you that each hospital should have a workout room with punching bags in them…or a huge padded wall that a person could pound on…call it a “wailing wall” for lack of a different term.

    Here’s an odd tip that I heard on the radio today….get some REAL vanilla…(like Watkins real vanilla that you use for cooking…Walmart sells Watkins now. ) Carry it with you. Open the bottle and take a long whiff of it when you are stressed…the guy on the radio said that it will help your brain release a type of hormone that will calm you instantly. It’s a common smell that gives comfort. I tried it today…if nothing else, it was pleasant to experience for that moment. Maybe it would be for you and Ronan also? Just a thought.

    Yes…I agree with you when you are “screaming”..where is all the help for cancer, for your baby, for your loved one! They have been doing marathon charity drives forEVER..why isn’t it cured now?! I have screamed that myself! Been there! I am THERE for YOU and your sweet baby too!

    We don’t know each other, but we are all joined at the hips because of the needs of one is the needs of many.

    Sending my love and strength…both on good days and bad. (hugs)

    Rosemary

  8. Maya! I hear your pain and it is valid. Ronan is taking his feelings out on you because of your unconditional love. You aren’t going anywhere so he is safe to do so. Mom’ s job description with all kids. You need a day off to eat and sleep so you can stay healthy. You and Ronan will be distraught if you get sick. Think of how scared he will be if you can’t be there for him. You are his loving mom, only you sweet Maya :). Sending love and strong hugs! Try eating protein and oranges small little meals for you.

  9. Okay, one more response from a supportive stranger. That unbreakable spirit you adore in your baby boy manifests as indescribable joy, or unbridled rage. Physics, right – actions have equal/opposite reactions??! I have one of those “spirited” kids. The hardest belly-laugh you’ve ever heard has an evil twin called bonkers. Yin. Yang. I can’t imagine there’s a single thing you can do to narrow those margins on a 3 year old dealing with a pile of shit that would crack most adults.

    So, truly, I like to think this day, too, will be detailed in a Mother’s Day card to you in 30 years. Something like….Dear Mama, thanks for only considering a rubber room, and not actually spending 2010-2016 in one…which, certainly, nobody would have blamed you for doing. Your time in an institution with the lady feeding pet pigeons wouldn’t have been very compatible with our remission celebrations, cancer-free anniversaries, simple backyard afternoons, couch snuggles or summer vacations. Not to mention, nobody else on earth would have loved me as much through my mischief, as a 3 year old, 13 year old, and 23 year old. No harm intended. Wine. On me. Forever. Go Devils. Love, Ro

  10. You are so very strong under the most hellish circumstances. I know you don’t think you are strong but the strongest amongst us needs help at some time. just don’t forget to take care of yourself

    huggles

  11. I am SO sorry for what you and Ronan and the rest of your family is going through, I also now think of the other families dealing with the same evil Cancer your family is and I am in awe at the strength and compassion you and they show for others.

  12. oh, you pain is so real and raw to me. I remember feeling like there was no way in hell i could carry my son though treatments and surgeries. I remember collapsing on the operating room floor for my sons first surgery and having the be escorted out. you are not alone although you feel it. us cancer moms have a bond and are never alone. And to famous words that I live by “If you’re going through hell, keep going” Winston Churchill.

  13. i love your honesty! that’s what this is here for…let it all out! let us be the “padded room” you crave. we are all here for you!

  14. Maya,

    When I was undergoing my own cancer treatment, one of the most powerful things for me was knowing how many people loved and supported me. Please consider me another one of the many that loves and supports you and your family!

  15. Still praying for you all..Jesus is right there next to you and sometimes that is hard to grasp. I also am concerned about you having someone who can answer a phone and come over and help you when you hit that place where you feel that way. Our cancer group here in Longview would answer that call if it were local, but I pray there is someone closer who can fill that gap.

  16. Maya, I read along with you every day but today I had to talk back. You are the strongest person I know but just reading daily what you go through and I am sure we are not getting the half of what it is like. When you write “if one more….. I’ll break I say go ahead and break it sounds like you have enough strength to have a little break down, all be it inside, because after reading YOU since the beginning I believe that you will then take a deep breath and start again because thats who you are. You do what ever you have to for YOU because the strong person you are can handle it. No matter what anyone says if writing this blog helps you then I say VENT VENT VENT I’ll always be there to listen and support you. Nothing you can on this blog will ever make me turn away. I only wish I could do more or even some small something to help take away some of your pain. Go ahead scream, yell, cry or even call me and I’ll come and let you punch something till you fell better, what ever it takes. As always you and your family are in my nightly prayers but tonight all my prayers are just for YOU.

  17. You are so STRONG! I totally agree with you. Funding for childhood cancer needs a huge improvement. Were are all the gold/orange ribbons in September like the pink ones we see in October?? I want the world to read your words and thoughts and feelings that I just read so they can get a tiny glimpse of what childhood cancer is like…just like you said hell. I know you’ll survive this and I’ll never stop believing in Ronan, even though I’ve never met him I feel conected to you guys. You give me so much inspiration and I have so much hope for him. I’m praying for strength and just a break and a great day for you.
    (I don’t know if Ronan is on any pain medicines, but if he is then it might help to change it to a different type. My friend’s little boy turned completely devilish when he had certain ones during his treatment for cancer. He was a little younger than Ronan, but that had a big effect on how he acted because he tolerated some much well than others by the way they made him feel and act. I could tell a night and day difference when they got that figured out for him)
    Anyways just know I’m thinking about you guys every minute of the day! You are doing an amazing job being there for Ronan when its so hard. Sending love….
    ALyssa Crews
    COLE Prayer Team…www.colesfoundation.org

  18. I am familiar with childhood cancer and Pch. We lost our daughter Jaydie to a brain tumor at the young age of 8. People are not aware of the struggle and the pain. The pain is for all the people involved in the childs life. I would love to meet you and even sit with you at Pch if your are interested. My prayers are with you all. It is a terrible disease and money needs to go to fighting for these kiddos! Please know that the hospital is aware of me if you would
    like some company. With Many prayers!

  19. Maya,
    I love reading your blogs and hearing the updates. Please don’t ever filter your blogs for the sake of others. I admire you for not drinking wine and popping xanax at this point! I think you are awesome and the more you write the truth the more people will get how bad this truly sucks!!!!! You are awesome and a great mom…..now go find your corner and get it all out!

  20. We ALL have a cross to bear. Some are heavier then others. I cant judge your situation or your reaction to that situation. But what I can pass along to you is that you are looking in the wrong places for help. You will not find the relief you’re searching for in doctors or medicine…and you certainly wont find it in a mental institution. Ask God for strength, peace, and direction. He is the ONLY way to the place you are wishing for. Pray, Read, and Believe. Walk by Faith, Not by Sight. When you want to cry, hug your little boy and praise God for giving him to you for another day.
    Once you change the way you are thinking, you WILL change the way your are acting. GOD IS THE ONLY WAY…PERIOD. His word is your sword and shield…USE IT.
    I am speaking from experience, for the last 117 days we have lived in a hospital room…
    Our cross is the same one you carry…
    Where is YOUR Faith?

      1. Dear Ronan’s mommy…you are doing just FINE…don’t give a second thought to some who are telling you differently! You feel, you love, you cry, you go on because you are THE mommy of Ronan. (and that is the best thing in the world for you). Yes, God is there. So is your faith in Ronan’s healing. Your heart is there with Ronan.
        My suggestion: Breathe. Just breathe…in and out. Love your son just like you are doing. Vent. This is YOUR blog and you do and say whatever you want!!!!!!! And please…know that we are praying and sending forth love to you and your son and your family.
        You are doing a great job, you are a great mommy…and screw the rest of it! 🙂

  21. Please continue the medication. You have to be as close to whole as you can be for your family. Praying for Ro… He is my brother’s step grandson.

  22. I know I am a little late in reading and following this blog, but I first heard about your story when Ronan’s song by Taylor Swift came out. No matter how many times I have listened to this sons, it brings tears to my eyes!! My very curious and loving 9 year old niece introduced me to your blog, after hearing his song she wanted to know more and with that she found out about Rockstar Ronan. She told me many more details about Ronan than any little girl should know, but I am glad she is so curious and searched to learn more. After that, I started reading bits and pieces and following and reading your new posts, but a little less than 2 weeks ago I decided to start over and start reading from day one. As I sit here crying my eyes out in the middle of the night I realize I will never look at life the same way. I think about you and your family non stop and I wish I would have found you sooner, heard more of your story sooner. I really just wanted to say thank you for sharing your story, your feelings and your life with the world! And know you have a new Rockstar Ronan follower and supporter for life!
    Love and prayers to you and your family!

Leave a Reply to sonia Cancel reply