Here’s what I know about life. Nothing.


Ronan. You know what I know about life? Nothing. Except for almost 4 years, I took care of you almost every single day. And then from the time you were diagnosed from the time you passed away, I was so emerged in the fighting for your life world and all of a sudden it’s just gone. Just like that. And now I am expected to go back to “life.” How wrong is that? How does one do that? I don’t know. You know what I feel like? This came to me last night as I was waiting for the devil Ambien to kick in, because yes, I’m back to that for the moment. I feel like somebody has taken my body out to the Arctic Sea. I feel like I am constantly being dipped in and out of that freezing ocean. And just as soon as I am starting to defrost, I am dipped back in where my entire body is shocked to the core. In and out in and out. It’s a never-ending feeling of numbness and pain in which I have no control over. That’s the best way I can describe it tonight, anyway. Then I was thinking about the outside, non bereaved world. I’ll bet they think the pain of this is something like putting a your most favorite dog to sleep. Not because they love their kids any less, but because I think unless you are in this situation, although you may try to understand you cannot possibly have any idea of how much this truly hurts. Does that sound cold, insensitive, and harsh? I don’t mean to. I’m only trying my best to explain how deep this pain is, to the outside world. Of how I know how much they think they can understand this, but they cannot. And for that, I am glad. I wouldn’t wish this on anyone. I would never want somebody who has not gone though something like this, to truly be able to understand the pain that comes along with it. Not fully anyway. It is just too much.

This past week has been much harder than I had expected. I get that the holidays are around the corner and I keep hearing everyone talk about how hard they are going to be for us, but I’ve been doing my best just to get by. It’s only been these past few days that I have realized that I have no control over anything, no matter how strong I am trying to be. I’ve been crying non-stop. I am trying so hard to give Liam and Quinn a somewhat normal Christmas. I took them to Target and told them to pick out some things. I tried my best to put on my pretend mommy boots because they deserve to have a nice Christmas, whatever that means. But this year, when they were picking out a few things, I made them pick out some things for your friend here, Super Nate who is battling Neuroblastoma as well. They picked out a blue light saber that really lights up, a clone trooper bobble head, and your favorite, “guys helmet,” Captain Rex. I am trying my best to make sure they still get to be 8 years olds, having an 8-year-old Christmas, when all I want to do is strangle Santa and shoot the fucking elf on the shelfs head off with a machine gun.  I’ve had a talk with them about how hard this Christmas is going to be on all of us. I don’t know if what I am doing is right but all I know is I’m not going to hide the fact that this is our first Christmas without you and it fucking blows. I’ve told them this in a much nicer PG rating way though…… although I didn’t want to. I wanted to scream, kick, cuss and cry in front of them, but I didn’t. Somethings have to be done a little more gently with a little mama love thrown in. I’m running on empty but I gave it all I had. I hope it was enough.

I went to PCH I think on Wednesday or Thursday night. I can’t remember now. I went to see Nate and to give him his toys. I stayed a lot longer than I expected. He was so excited about the real light saber. I felt so blessed to be able to give it to him, from you. He let me play with him in his bed and he even let his mama slip out to take some things to her car and grab some food. I got to stay with him, alone. What a little doll. We played the funny monkey game on my iPhone but my favorite part was when I had him giggling up a storm by making his Storm Trooper bobble head eat some cheerios. His little laugh was priceless. He even let me kiss his bald head and said I could come back sometime to play. Just as I was walking out, I saw one of your favorites, playroom Kathy. She kidnapped me and I ended up staying another hour, just catching up with her. I saw some of your other favorite nurses, Kathy and Katie O. I cried when I saw them as I haven’t seen the two of them, since we were there getting your last round of chemo. I asked if you very favorite nurse, Arica was there but she was not. I told them to give her a hug for us anyway. It was nice to see them all but it made me super sad that you were not there with me. It turned into a full on party because Miss Elizabeth Blair ended up being on the floor as well, getting treatment. I got to give her a hug as well as her mommy and daddy. I left PCH feeling drained, but in a good way, I guess. I told your Mr. Sparkly Eyes that now going to a hospital to make a little boy smile feels so much better to me than sitting in a fancy restaurant, trying to enjoy something normal. Normal does not feel good. Normal does not exist. I would rather be off, doing something for someone else, than trying to pretend to live in a normal world where pretend normal dinners will never be the same. So, when I get a night out….. I would rather sit in a hospital with a bald-headed little boy than in a restaurant full of friendly faces. This is just the way it is now.

Being in our house has been really hard for me all week. Everything is making my skin crawl. Dr. Jo has been gone which I’m sure is part of the reason, I feel like I’m going to flip out. She has become my lifeline and the fact that I have not been able to see or talk to her, has been really difficult on me. Much harder on me than I thought it was going to be. I’ve been so tired from not sleeping well. I came home on Thursday and passed out for a little bit. Naps used to come so easily to me. To us. I fell asleep for about 15 minutes. It was restless and I dreamed of you, but in the worst way possible. I dreamed that I was watching you from your radiation table. You were looking at me in the eyes with such a look of trust because you knew that I was going to save you, because that is what I had promised. But than you died. I woke up to this nightmare only to find that it was indeed, my reality. It wasn’t a nightmare at all. I had dreamed the truth. So now for the past week sleep has become so painful and the days are too much to handle so I crawl into bed, begging to black out. This is where my frenemy, Ambien, has come back into play. I’m not happy about this at all. But sometimes, I need a break from everything. Including life.

I’ve been hiking and being active to try to calm down the never-ending screaming in my head. It’s not helping. I went up Camelback, late tonight, just like I’d said I’d never do again. I did. But this time, I was able to use my handy little flashlight app on my iPhone so I could see better. Thanks friends.

Ro baby. This is all for tonight. My brain is mush, my eyes are tired, and my heart is not fucking healing. I just want you back. Or I just want to be with you. I love you. I miss you. I hope you are safe.

xoxo

Advertisements

12 thoughts on “Here’s what I know about life. Nothing.

  1. Wendy Ledford

    Thinking of you Maya. I continue praying for you to get through each second of the day….with HOPE. My niece Alexa has been n heaven now, three years. It is so hard for me, especially during Christmas time, but especially for my sister Robin (Alexa’s mom). She-like you- has had her child ripped out of her life because of Neuroblastoma. I pray that somehow during this holiday season, God will reveal some sort of sign to you that Ronan is completely safe right now.
    For me, I believe that there is one God who loved the world so much he gave his one and only son Jesus to die for us so those who believed in Him would NOT PERISH but have everlasting life. (John 3:16) This is why I celebrate Christmas….and am able to have peace that my precious Ally is safe and sound in Heaven. I genuinely want you to know that even though I have never met you, my heart breaks for your pain. I can’t stop thinking of you or praying for you….especially when I look at my precious little girl who is not taken for granted for one second. She happens to be Ronans age and that might be one of the reasons I have been so drawn to your story and to not give up praying for God to comfort your broken heart. I cherish each second with her—not only because of watching my niece go through all that she endured in her life because of stupid Neuroblastoma, and learning how precious and important it is to live each day to its fullest, but because of YOU and your precious Rockstar Ronan. Thank you for sharing your journey–
    Hugs and Love from Atlanta, GA.

  2. Cloakey Notes

    Oh Maya! My heart just breaks for you all over again every time I read your words to Ronan on this blog. I wish I could wave a wand and Ronan – and the rest of the children whose lives were cut so tragically short by freakin’ cancer – will come home to you and to their families. It is not right that no “therapeutic advancement” has been made for childhood cancer in 30 years. My whole life time. It makes me so freakin’ mad. I am determined to do something about it. I am in Maya’s Mafia, and I will take a stand with you. Stand up to cancer. Stand against cancer. I really don’t remember how I found this blog back in March (maybe I was googling cancer stuff and your blog came up? I dunno). It doesn’t matter. All that matters is that I am here, and you’re here and we’re not the only ones fighting. We’re raising an army. A mafia against cancer. I know you follow my blog as well, and I just want to say thank you for that. Please be sure to read tomorrow’s post. Especially the last paragraph. I didn’t name you, but it is you I am talking about. Love and hugs and prayers …. yes, I know they’re unwanted, but you are prayed for daily. Always. For the rest of your life. XOXO

  3. Jaime H.

    I’m shedding tears for you today 😦 I’m so sorry you had to lose you precious boy. I do think it’s so wonderful how you are spending time and energy at PCH to help other families that are going through the same thing! I pray for you all the time. I hope Liam and Quinn help to bring some healing and joy to your heart this Christmas. And your wonderful hubby, too. Be easy on yourself Maya, it’s only been 7 months, not 7 years! God bless you and your family, sending my love and thoughts your way today and every day, xoxoxo

  4. Kelsey

    ……so sorry my lovely maya…. Fuuuuuuuuuuuuck…….aaaaaaaaaaahhhhhhhhhhhhggggggggg…..i wanna reach through this effin computer and squeeze you……you are awesome. I wish for today that u see your strength…..allowing yourself to face this pain, recognize it and acknowledge it…..takes so much more strength than you know…..and know that you are loved…you are loved when asleep on ambien, loved in the dark on camelback, loved when you are sobbing, loved when you are screaming FUCK, loved when you find a moment to smile…..just being….you are loved….continue being you…and continue this journey as it unfolds infront of you….just as you do. One

  5. Leila

    What a horrible mother you are to have let your sons life slip through your finger tips. I get it. I lost my three month old baby three months ago.
    I came across your site yesterday and all day long I was bawling my eyes out. Even now, they are still swollen from crying so much.
    You say the words that I keep bottled up.
    I hate the way people treat parents that have lost a child. The more that time passes, the more pain you feel. It seems in others eyes, the longer it has been, the more they expect you to blend back in with society as if nothing has ever happened to us.
    Losing a child is like having open heart surgery with no anesthesia. Someone opened up your chest cavity then cut out half of your heart and stuffed cotton in your chest to make it look as if there is nothing missing. Then, the best plastic surgeon puts you back together again. That surgeon did an amazing job at covering the traces of the surgery. Now, people look at you and think you look normal and do not understand why you say that are not healing when you do not even have a scar that they can see!
    This world sucks and the people in it too. You were right when you said this life is hell.
    I’m not going to tell you that I am sorry for what you are going though. I am sure that you are as sick of those words as I am. I feel if I hear them one more time, I will puke.
    Thank you for your blog. It helps knowing that I am not alone in going though this. Our kids may be gone for now but not for one second will they ever be forgotten nor will we ever cease to love them with all of our hearts.
    Your son had some AMAZING eyes. What a cutie patootie! Keep your chin up Mamma! We ARE going to get through this… one way or another.

    1. Carolyn

      Leila, I am so sorry. I don’t know how you find the strength to go on, but I will be thinking about you and your baby, and wishing that every Christmas after this gets a little easier for you. I am sorry that you had to be one who has to bear the burden of loss for all the rest of us, who did not lose this awful lottery of life and death. I am so sorry, and please know that you are not alone, and neither is Maya, or the other Mamas who had to bear this incomprehensible loss. I hope next Christmas is better for you. It has to be.

  6. Stacey Boltz

    This was a tough read. It hit me this time, for some reason, the irony of you writing this blog here, where we live. The bubble in Phoenix is bigger than most places, with much thicker, almost impenetrable walls. Superficial doesn’t even do it justice. Good for you for being brave enough to deal with the additional BS that comes with this territory.

    I am a forever fan, friend and a supporter. But you know that.

    XO
    SB

  7. crazyazdude

    i dont have anything profound to add, just wanted to say that your blog will give others, who are going through what you went through, strength or at the least some level of comfort.

    Regards,
    BW

  8. Meshelle

    I was talking to an admissions counselor at one of the schools that I was thinking about transferring to. She asked me what my five year plan was and I tried to explain to her that I didn’t believe in five year plans. She didnt get that life should be about there here and now, the spontaneous and the fun, the tragedy of planning for something that might now come. She then rephrased it to ask what my educational goals are. I told her very simply that my goal was to kick neuroblastoma’s ass (not my exact words)…she responded with neuro…what? As I sat there telling her everything that I had learned about neuroblastoma and the way it was being ignored, i tried to tell her about all the beautiful children that have been taken away from their loving familes. She then proceeded to tell me that if I was going to go through all the trouble of getting into medicine that I should at least go into a field where I can make money. “There’s no money in pediatric oncology” She didn’t get it, and I could tell in that moment that she never would get it. I felt sorry for her because all she did was prove that you’re never too old to be ignorant. I cannot ignore your words or Ronan’s eyes. I guess she never believed in the greater good. Everyday that I drag my ass out of bed and into work, every night that I spend countless hours in the library studying is because of you and Ro. I want to make a difference. I will make a difference all while screaming FUCK YOU CANCER from the rooftop. I know what’s at stake. As much as I wanted to slap some sense into that woman, I restrained myself and kindly handed her my purple fuck cancer bracelet. I told her to look up your story and then try to tell me that it wasnt worth it.

  9. kathleen

    Maya,
    I found your post today as pure luck, as I am a mother of a son who passed away of neuroblastoma twenty two years ago on December 23, 1989. Consequently, every time around this time of year, my heart is once again reminded of the loss of my wonderful son Anthony who passed away of cancer at the young age of three.
    I too was a young mother at the age of twenty-eight when my son lost his battle with cancer that was diagnosed at the age of six months. However, looking back at that time and remembering the good and bad of the experience of dealing with cancer for two ½ years all I can remember is the love that filled my life during the experience. Furthermore, I never thought I would ever want to experience Christmas again as it was around the holiday’s that “little Tony” passed away. However, being a mother of three other children their love for me as a mother and my love for my children have allowed me to heal and to appreciate every holiday that I spend with my family.
    Maya, time does not take away the pain or the memories! Time does allowed us as mothers to move ahead and to once again smile, to appreciate the little things in life, and to remember the wonderful gift that we as mothers, were given in allowing us to love our courageous and loving sons who had the horrible disease of neuroblastoma.
    Maya, my thoughts are with you and I feel very blessed to have found your website and feel free to write me if you would like to communicate with me.
    Much love,
    Kathleen P.

  10. Carolyn

    Maya, at Christmas time, more than ever, I wish even more there was something I could say or do to help take away even the smallest bit of your agony. I wish it were a consolation that we talk about, and think of, your beautiful son all the time around here. I just hope that by next Christmas it won’t feel like it does now…for any of you. Love, Carolyn

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s