Because Kids get Cancer, too.


 

Ronan. September 1st. Childhood Cancer Awareness Month. How many people out there, are aware? Not enough. Or if they are aware, they are choosing to ignore it. Assholes. If everyone was AWARE and not IGNORING it, you may still be here. I truly believe that. Was I that unaware Asshole? Totally. Do I wish I still were? If it meant having you here? Absolutely. I would give anything to have you back. You know this. I would sell my soul do the Devil in a heartbeat. It would be so much better than being trapped here, without you. But someone else had other ideas. I don’t like it, but I have to start to accept it; a bit more and more, everyday.

Otherwise, I am going to turn into that bitter mama who is mad at the world. Who has EVERY right to be mad at the world and to turn her back on everything. I don’t want to end up this way, but sometimes it seems like it would be so much easier than to continue on this fight. I know I don’t have a choice, Ro. I know I have to make a difference even when people tell me that I DON’T have a responsibility to anyone but myself, your brothers and your daddy. I know this is not true. I know I still have a responsibility to you. I have to make a difference because this is what you would have wanted. I know you want me to find a bigger purpose in this world than just worrying about if my ass looks big in my LuLu Lemon gym shorts and what to cook for fucking dinner. I know you want me to leave your mark, everywhere. I have no choice but to honor you in the biggest way I can. That means that I will fight this fight until people start to listen. Until huge companies, start to honor Childhood Cancer, the way they do Breast Cancer. Until people stop turning their cheeks because it can’t happen to them. Fuck you. It can. I hope it NEVER does. But I hope if it does, you never have to walk in my shoes because I am going blaze the trails so that Childhood Cancer does start to get the attention and funding that it deserves. So that one day, there WILL be a CURE. So beautiful families, don’t have to watch helplessly as their child dies even after they have done all they can do. The best they could have done. The best will never be enough, because you still died, Ro. I will always feel the guilt of this inside of me. I will never understand why my love was not enough to save you. It should have been. But it wasn’t because Childhood Cancer is that ugly. That real. That scary, that it can change everything in the blink of an eye. But don’t worry. If you choose to ignore it, it cannot happen to you. Bullshit. I am like a flashing, neon sign now people. If you cannot stand to hear this story, because it is too sad, than stop reading, because you are NOT worthy of knowing this beautiful love story. You are not worthy of watching the beauty that is going to come out of losing the most beautiful boy in the world. If you are strong enough to be here, I thank you from the bottom of my heart. I love each and every one of you. I need your help, more than ever. You are all going to help in this fight for Ronan and thousands of other children, who deserve a voice. I feel so blessed that Ronan has touched your lives, even if many of you did not know him. If you are not going to be the loudest cheerleader for me, Ro, or thousands of other precious kids who are going through this…. just knowing that you feel like I have made you love your babies, your family, friends, appreciate the little things more…. still means so much to me. Just knowing that it is because of my Ro, that you feel this way… makes me feel like I am capable of making this world a better place.

I know I have a big job ahead of me, but I feel as if my head is becoming a little clearer, more and more everyday. I feel like the fog is being lifted. I’ve stopped all of my medications. All of them. Even the sleepy meds. Cold Turkey, YO! Just because everyone told me I couldn’t do it, and I shouldn’t do it. Well, I did. I am finally starting to feel free again. I am taking Melatonin to help me sleep. I should have listened to my Mr. Sparkly Eyes at the beginning of all of this as he was always suggesting it. Of course, I had to learn the hard way. Thank GOD for Stacy and for bringing that bottle over to my house the other night. Don’t get me wrong…. my sleep is still not wonderful. I still toss and turn. I still wake up, screaming and crying for you. I am still having very vivid, and mostly awful dreams. But it’s not any worse than it was while I was on my prescription sleeping pills. And at least this Melatonin, is a natural substance. I am a fighter and I will fight though this. I refuse to become one of those moms who ends up going through something awful and becoming addicted to prescription meds. No judgement at all. I just know that is not for me. It is not the way I want to live this life. I want to feel, as painful as it may be. I don’t want to be numb.

I’m in the best place I can be, as of now. It’s not good and I know this. I know I am being hard on myself which is why I’ve named this phase of grief, the Phase of Torture. I am doing a lot of things that are not good for me. Not eating, pushing myself on my Inferno Hikes, throwing up a lot if I do eat, second guessing everything we did for you, mentally beating myself up…… But I am here, I am getting up out of bed, I am being a good mom to your brothers, I am being honest, I am going to a lot of therapy, I am feeling. I AM FEELING. I have not felt for a very long time. I was numb and in shock. I still have those feelings some days, but they are less and less.

Ro. I fell asleep about an hour or so ago, but now I am up again due to my dreams. I hate them. They never involve you, and they are always so scary, sad, and mean. Kind of like my everyday life without you now. Where are you and who is taking care of you? Who is brushing your teeth, rubbing your little back, and singing Twinkle Twinkle Little Star to you? It’s not me. I hate this.

I’ve written to you for days now. Not being able to finish. I have too much to say, too little to say, too many scary things going through my mind, that I don’t want to say. I’m feeling tired, sad, and angry. I’m trying to do my best, to stay positive. Walking through this life without you by my side is utter torture. You spent 4 years attached to my hip. Trying to go on with you gone now, hurts so much. And some days, I just don’t want to do it anymore. I just want to be with you again. I’ll never understand, why it had to be you…. why did you have to be the one to be taken away. Who would be so cruel to do such a thing? I don’t want this life lesson. I don’t want to be grateful for all the little things because I don’t have you anymore. I just want you back. I think I may have to throw up now. We are all here, tucked away in our quiet house for the night. You are not with us anymore and everything about our lives is so different, in the most awful way. I wish I really had an arm missing, or half of my face…. anything but you.

This weekend has been a blur. Lots of family time. We had Kenny, Stacy and the kids over last night. Always good to be with them as they are like family and they just get it. They know how much we need them and they have been such amazing friends to us. I was in a foul mood, talking trash to your Daddy….. being a tough ass. I had a good talk with Stacy, who tried to reason with me a bit. There was no reasoning last night and I usually listen to her. I told her how I didn’t understand how I was just expected to go on and just go about normal things now. Like how could I possibly go on a trip with your Daddy in a few weeks? A trip. Are you fucking kidding me? This is a trip we’ve taken together for years now… and I am supposed to go in a few weeks. Is everyone on crack? This is NOT a normal year. Normal things do not exist yet. Will they ever again? No. But I need some time. I cannot just be thrown back into this life, and be expected to do things that I have done before, in the past, when you were among the living. You just left this earth. I am still here, and trying to figure out how to navigate my way through the fucking grocery store. How am I supposed to hop on a flight to Vegas in a few weeks??? It seems like a sick joke to me. I tried to go to the race tracks in Del Mar over the summer and almost had to be hauled off to the loony bin because I could not handle all the obnoxious people, smoking everywhere, in their stupid hats and clothes. And going to Vegas, during a normal year has never really been my cup of tea. I can stand that place for about 24 hours, on a good day. Can you imagine how I would freak out, going there this year…. it gives me anxiety just thinking about it. If I go, I’m going to wear a shirt that says something like, “My son just died, but let’s gamble anyway.” WTF people?!?! I just want to be left alone. I just want my time to grieve for you. I don’t want to go to Vegas, I don’t want Thanksgiving, I don’t want the weekends anymore, I don’t want to pretend like this is getting easier….. because it is not. Why is everyone acting like just because it’s been almost 4 months, that I need to be moving on, and starting to feel better. I WILL NEVER FEEL BETTER. That I can guarantee you. Do you know what a good day for me is like now? Let me just tell you. A good day now, is a day when my throat does not feel like it is going to close up and I am going to just suffocate to death. A good day is when I can actually swallow, without it hurting. A good day is when I can actually eat a meal, and keep it down. A good day is when I can put on a happy face, and check off some of the things on my shit list. I’ve come up with a new saying that I have adapted. Fake it till you make it. Yup. I’m faking it everyday that I am up out of bed and being productive because I don’t want to be at all. I don’t want any of this life without you.

Did you know Ro, that my mind is so distraught from losing you, that I cannot remember any happy memories of you? My mind cannot even go there. The PTSD is real and it is part of what I am going through now. I’ve talked to all of my therapists about it. They all agree.

 

PTSD can cause many symptoms. These symptoms can be grouped into three categories:

1. Re-experiencing symptoms:

  • Flashbacks—reliving the trauma over and over, including physical symptoms like a racing heart or sweating
  • Bad dreams
  • Frightening thoughts.

Re-experiencing symptoms may cause problems in a person’s everyday routine. They can start from the person’s own thoughts and feelings. Words, objects, or situations that are reminders of the event can also trigger re-experiencing.

2. Avoidance symptoms:

  • Staying away from places, events, or objects that are reminders of the experience
  • Feeling emotionally numb
  • Feeling strong guilt, depression, or worry
  • Losing interest in activities that were enjoyable in the past

Things that remind a person of the traumatic event can trigger avoidance symptoms. These symptoms may cause a person to change his or her personal routine. For example, after a bad car accident, a person who usually drives may avoid driving or riding in a car.

3. Hyperarousal symptoms:

  • Being easily startled
  • Feeling tense or “on edge”
  • Having difficulty sleeping, and/or having angry outbursts.

Hyperarousal symptoms are usually constant, instead of being triggered by things that remind one of the traumatic event. They can make the person feel stressed and angry. These symptoms may make it hard to do daily tasks, such as sleeping, eating, or concentrating.

It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

I relive what I went through with you, over and over through the day. I don’t have any other memories of you as of now, besides you being sick, you dying, and the love we had for each other. I am trying to work past this but as of now, I’m stuck. Maybe that’s why I cannot dream about you. I’m stuck in such an awful place in my mind, trapped in between awful memories, and my reality, which is Hell on Earth.

I went Inferno Hiking at 1:00 today. Nobody else was on the mountain. It was nice but I hardly remember any of it. I have decided that the reason I love it so much is because it is so painful. So hot that my socks burn the bottom of my heels. It is dangerous and it is the only time during my days that I have to let go of the memory of you not being here. When I am on my run, down the mountain, I have to stay so sharp, so focused on what I am doing…. because one wrong step and it is goodbye Maya, hello broken arm and face plant into the sharp, burning rocks. Bring it on.

I know you know about my intuition that I have had my entire life, Ro. But here is just another example. As I was driving home from The Inferno today, I started thinking about the neighbors that we brought flowers to, on your Random Day of Kindness. I was getting close to their house and I was beating myself up, because when we met them, they told us about their baby girl that they had lost. Their sweet baby girl, whom never even made it out of the hospital. I knew that she passed away sometime in August and I started getting really mad at myself because I could not remember the date, and I had really wanted to put a card in their mailbox, just to let them know I was thinking about them. It’s September now, so I knew that the time had passed and I was so disappointed at myself for forgetting. As soon as I got home, I parked the car and went to get the mail. I pulled it out, I saw a letter addressed to me, from our neighbors. That is weird, I thought to myself, as I had just spent the past 4 minutes, thinking obsessively about them and their baby girl. I ripped open the letter and it was from the wife. She had taken the time to write me a beautiful letter, more about who they are, who their kids are, and how the daughter that they lost, would have been 22 this year. I started to sob. It was such an honest, beautiful, and kind letter. She wrote to me about how she had read my blog before meeting me, and that I had seemed so strong from my words. But then when she saw me, face to face, that I seemed so fragile. She gets it. She knows why I look that way. It’s because she is a mother, who has lost her little girl. It’s almost like a secret handshake that we have. She can easily see the pain in my eyes, when others cannot. Getting that letter today, reminded me that for as fragile as I am…. I still cannot give up on this life. That I cannot give up on myself. I am on to something with the way I have some of these things in life figured out. I need to listen to my instincts a little more and trust in myself that the path that I am on, is going to lead me to where I was meant to go. As much as I want to fight this stupid life now… I have too much to go on for. You are still my number one reason for living. You are keeping me alive, Ronan. You will take me when you are ready and I just need to trust and believe in that. It is the only thing I trust and believe in anymore.

I’m going to go baby. This has turned into a novel. I hope it even makes sense. I love you so much. To the moon and back, forever and ever. Sweet dreams little one. I hope you are safe.

xoxo

This made me laugh. I will take a laugh wherever I can get it:)

 

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17 thoughts on “Because Kids get Cancer, too.

  1. megan

    Maya, I just want to express my love for you and Ro. You had better believe that you have touched lives and made us better people and parents and I will do everything in my power to bring awareness to childhood cancer and Ronan’s beautiful life. Ro’s name will be as well known for childhood cancer research funding as Susan G. Komen is for breast cancer research. I will share your blog on facebook until all my friends know Ro’s story. That picture at the top of this post will be my profile pic for the month of September. These things are the least I can do, but I plan on doing much more in the course of my life to help you raise awareness. Much love and sweet dreams Maya. Every night I hope that Ro visits you in your dreams and I look forward to the day that you will share your beautiful dreams of healthy Ro, because I know that day will come.

    1. Katie I.

      What a wonderful idea. I too have made Rockstar Ro’s pic my profile pic for the month of September. Maya, I hope that is ok, please let us know otherwise. 🙂

  2. Laura

    You are going to make a difference in childhood cancer, just like Kay has done for breast cancer. You just let us know how you want to proceed. So proud of how strong you are through this time period. Giving up meeds is such a great step forward. Hope you can enjoy the rest of your Labor day weekend.

  3. Nicole

    I posted that picture on my facebook. I will raise awareness where I can and when I can. He deserves it, you deserve it and all these beautiful babies deserve it. I agree with everything you said. If you do go to Vegas bring your bracelets drop them on tables where people are smoking and gambling. Remind them that Vegas ends and life goes back to normal. Maybe they won’t leave everything in Vegas. Eff you cancer. Let’s raise awareness. I’m in, I’m game!

  4. Sj

    Maya – I lost my father (last parent left) to cancer 2 weeks ago. He never told me he had it. I can olny chalk it up to him not wanting to have me watch him go through it. I lost mom at 14 to it. Ugly word. Cancer. At the funeral for my Dad was my aunt, who lost her son to it when I was just little (7). I told her about you and Ro and your story. I’ve lost both parents to it now and I still can’t imagine or fathom losing one of my 3 babes. If one more person tells me to be fucking strong I will scream. I’m not strong I’m going through the motions. I was “diagnosed” with PTSD. Thanks for listing all that out. lol I almost forgot what it entails. I’ve rambled on before so I’ll stop.
    Remember him before you go to bed…I’m hoping that way he sneaks into your dreams. All the love in the world to you mama.

  5. Katie I.

    I am so very moved to the core by your words and the greatest love story I know… You, Ronan, and your sweet Family. This love story is bigger than any book or movie that I’ve ever read or seen, there is obviously no comparing… it will change childhood cancer as we know it. Love you Maya… Love you Ronan… XOXO

  6. Andy and Genny

    We are always thinking of you, Woody and the boys. I honestly haven’t checked in the past month until this morning. You’re getting better. I can tell a difference in your writing. Keep doing what you’re doing. Keep living for Ronan. We love you.
    Andy and Genny S.

  7. Jaime Harris

    One of your biggest cheerleaders here! Praying for you every day, thinking of you! Wishing you all the best! I love that photo of Ronan. I’m glad you made me more aware of what Sept. stands for by way of childhood cancer. I think it’s awesome your off all the med’s and you’re doing the best you can! I’m so happy that you have such wonderful people in your life, your friends, family, etc. God bless you Maya! xoxo

  8. Jaime Harris

    My husband and I donated some money to St. Jude today and I feel great about it! 🙂 Hope you have a good day today, I know you hate Sunday. xoxo

  9. kim

    maya,
    i am ashamed to say that i was an asshole who was completely clueless to childhood cancer and childhood cancer awareness month. and i’m grateful and proud to say that because of your beautiful blog and your generosity in letting me hear your and ro’s love story, allowing me to get to know just a tiny shred of this incredible soul i am no longer than ignorant asshole. thank you a million time for that invaluable gift! i’m thankful to you not only as a fellow mommy but a fellow human being. thank you so much for sharing ronan and his beautiful story with the world!
    your strength and courage maya are like NO OTHER! the fact that you get up day after day and are a devoted wife/mommy when your heart has been ripped out is mind boggling to me. its like you said, “you’re never going to feel better because ro is gone.” and yet you’re still here doing the best you can, trying to help others, working on yourself with therapists, AND ready to put every ounce of yourself into raising awareness and kicking cancer’s ass for ro and all the other precious babies out there! gosh, you are a freakin maniac! hurricane maya, look out cancer!
    i miss ro. my heart breaks for you and the fact that you have to find a way to survive with out your buddy, your soulmate. i love you maya! i hope you can feel how loved you and ro are! xoxo

  10. Kari R.

    If your husband and family feel it is important to try to maintain the Las Vegas annual tradition, you could try to make it a new tradition. The two of you could stay off the strip at one of the resorts by Lake Las Vegas. You could lose escape in some Cirque de Solei shows and go to a few restaurants. A way to maintain some tradition but compromising a little. My friend and her sister went there after their mom died from breast cancer just to get away, and she said it was relaxing and not at all like the obnoxious Vegas trips she used to have.

  11. Sara

    I just shared this on my FB wall and am absolutely dedicated to Ronans journey to help other people become aware of this horrible cancer. I am in it for the long hall. I feel like I was such an asshole, who was so unaware. I am no longer living in a bubble. I’m behind you all the way Maya!

    Hugs!

    Sara

  12. Kym

    Maya,

    I’m so sorry about your baby boy and I know that doesn’t mean really anything..I do know the pain of watching your child going through cancer though. My daughter Adyson was diagnosed with wilms tumor at age 2. Being a mom and watching your child go through that is the worst thing EVER!!! I can’t wait for the day that childhood cancer get’s the awarness it deserves for these babies…I would do ANYTHING to not have a family go through the pain of loosing their child or even to watch their beautiful daughter/son go throught that crap of chemo/radiation. Prayers to you and your family~

  13. RAM

    When I saw you this summer, I felt your million little pieces. I wanted to curl you up in my arms. So fragile is right. I had another Ronan message today. I was at OverEasy this morning with my husband for breakfast. A beautiful family sat next to us with a gorgeous little child that brought thoughts of Ronan alive. The little guy followed me out as we were all done at the same time so I had a moment to say hello to him. I was consumed with thoughts of Ronan.

  14. Natalie

    Ok this I hope I dont freak you out but today my husband and I were sitting outside and he looked at me and said,”hows Maya doing today, what’s up with her?” I looked at him in shock and just smiled bc now I know he’s listening to me when I talk about you, Ronan and your life story…I filled him in about you and I also donated to St. Judes Hospital. I hope you have sweet dreams of Ronan and I cannot wait to Rovk the bracelets! 🙂 Much love from Ohio!

  15. R

    Maya, You’ve done so much to change the world. The plans you’re formulating are already in action. Here. Right now. You’ve affected more lives than any one of us could plan to do in our lifetime. -notes from the witching hour
    oh and fuck you cancer!!

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