My Ro. I miss you so.


 

 

 

 

Ronan. I think it’s been a few days since I’ve written. The days are still creeping along, ever so slowly. You’re still gone and I am still here. Barely. We are still at the beach. It’s getting closer to the time when we will leave this place, and return home. The thought of that makes my stomach turn. Back to reality. In a big way. Back to life going on, without you here. Your brothers will return to school and life will move forward. I don’t know how I am going to do this without you. It doesn’t seem possible.

I’m not really sure how the days have been going by; but they have. My memory is still foggy as I sit and try to recall how we’ve spent our time. A little time at the beach, eating out, seeing some movies, running….. I think I’ve slept a lot. Mostly just laying in bed, missing you. Not really living as I’m still not ready to. I had dinner with your daddy last night. It was a sad dinner. Everything with him is sad because we are both so sad about you. We talked about you a little, but dinner was mostly filled with silence and small talk. We saw a movie afterwords and it was really hard for us both to sit though it. My lack of concentration is distracting to everything I do, even trying to sit through a mind numbing movie. You would think things like that would be easy for me, but they are not. Even the simplest things have become difficult.

I think I’ve been avoiding phone calls. Crap. I haven’t called your Nana back in a week. Grandpa Steve has called for weeks and I haven’t returned his phone calls either. I’d really just prefer it if I weren’t here in this world anymore to worry about returning phone calls or having people worry about me. I just wish I were with you. Not my choice though, I know. I miss you more than ever.

I’m reading a new book. I like it so far, although I’m not that far into it. It’s called, “The Other Side of Sadness.” It’s basically about the way the mind works when losing a loved one. It is making sense to me as it’s more of a scientific approach to the way the mind and body work when dealing with so much pain. I think I’ll finish it in a few days, but it takes me longer to read books now. I used to fly right though them, absorbing everything easily. Now, I find myself having to go back and re read things and taking the words at a slower pace. It’s as if I’m becoming an entirely different person. Even the way I read a book is fucking different now. Just when I thought I had myself and life all figured out. Turns out, I knew nothing and I only really existed as the person I was, due to being your mom. I don’t know who I’m supposed to be without you. You were such a big reason to why I was the way I was. That person seems gone. I do get glimpses of her every once in a while. Certain people bring out parts of me that I miss so much. Macy is one of them. So are Liz and Olivia. I guess it’s because I feel so comfortable around them. One second I can be looking at Macy, and we will both be crying about you and a second later a song will come on and the next thing I know we are singing our lungs out together to an old school song, while laughing so hard we can hardly breathe. Thank god for those moments…. I need to be around people who make me laugh. Laughter really is the best medicine. For a few minutes a day, it makes me happy again.

I started Liam and Quinn in a camp over here today. They desperately need something to keep them busy, especially Quinn. He’s been really clingy to me which is understandable, but also not healthy for either of us. They both seemed to think it was o.k. and the will go back all week. I am hoping they will like it a little more tomorrow. I think it looks like a really fun camp, but I know for Quinn it’s just that he is separated from me and worries about where I am, what I’m doing, and if I’m coming back. He seems unsure about everything no matter how much I try to convince him that nothing is going to happen to me. What I really want to do is scream that he is absolutely right, that he is so fucking smart, that there are NO guarantees in life, and something could happen to me, as they could happen to any of us at any time of the day, because they can. Look at you, baby. My healthy, strong, baby boy who had this fucking cancer eating away at his body and nobody knew it. Quinn is completely right, completely intuitive, but that is not proper knowledge for an 8-year-old to know. It’s my job as his mom, to reassure him that everything is going to be o.k., when I know this in fact, could be a fucking lie. I am trying my best to protect the shred of innocence that your brothers have left. They have had to learn such a very hard lesson, one that a child should never have to learn. I have to make a choice with this lesson. I can either let it destroy them, or make them in to better human beings because of it. I am working on making them better human beings, trying to take losing you and the lessons that have come with it and turning it into something positive. It feels like such bullshit to me though because it’s not the truth. The truth is this is totally fucked and they shouldn’t have had to learn such a hard life lesson this way. All I really want to do is hide in bed, cry, and scream and let your brothers do the same. I can’t though. I have to go on, I have to give them what tiny pieces of me that I have left. I am giving them everything I have, but it is not much. They really are amazing little boys though. Such good, sweet, funny, smart, boys. Liam has the mind of a 30-year-old and Quinn and his memory that blows me away. I do find myself blown away during many points of the day over things that they say or do. Life has so quickly gotten ahead of me and it’s as if I cannot catch up, no matter how hard I try.

O.K. baby. I think I’m tired now. It’s 2:30 a.m. Ambien is kicking in. UGH. Once again I had so much more to say to you but just cannot do it tonight. Just know I miss you so much. I love you to the moon and back and hope you are safe. G’night my Ro baby. Love you forever.

xoxo

 

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19 thoughts on “My Ro. I miss you so.

  1. Cheska

    Think about you everyday… hoping something can take the pain away and make you smile and feel peace, comfort, and happiness again. I know in my heart that the only thing, at this point, would be to have your precious baby back, and know how sadly unrealistic that is. It breaks my heart. =(

    “I take a walk outside
    I’m surrounded by some kids at play
    I can feel their laughter, so why do I sear?
    Ohhh and twisted thoughts that spin, round my head
    I’m spinning, ohhh, I’m spinning
    How quick the sun can drop away
    And now my bitter hands cradle broken glass
    Of what was everything…”

  2. Danielle

    I sound like a complete insensitive bitch…. But I love your nail polish. What is it?

    <333 always have you in the my mind.

    1. rockstarronan

      This comment made me laugh out loud. It’s by Deborah Lippmann. It’s called Happy Birthday. It’s amazing, stays on forever and Ronan would have LOVED it. He loved to have his nails painted sparkly.
      xoxo

      1. Danielle

        Glad to have made you laugh. I also just bought nearly every color she has similar to that one. They’re. So. SPARKLY! Now, I too will think of Ronan when I wear it, and you.. and if there is any justice, Ill think of him when I look at my bank account and see how much I just spent on nail polish.. lol.

  3. Laura

    Our thoughts and love are with your entire family. I’m sorry that these days are so hard, but you all are making it through as a family, together. Baby steps one day at a time. I wish I could wipe away your pain. We are there for you. Try to feel the joy the lazy summer days with family and beach. The beach is very healing. I hope the boys start to enjoy camp, structure and new friends can be good. All our love goes out to your entire family.

  4. Lisa

    Maya,

    I saw this on a Layla Grace Facebook post…Neuroblastoma Awareness Week is July 18-24.

    Thank you for sharing your story.

    Lisa

  5. Jaime Harris

    I also think of you daily and pray for you as well. I’m glad you found a book that you like. I hope it helps. I’m so glad that you have your amazing twin boys! So sorry for your struggle and pain. Praying for you all the time. Thanks for sharing Ronan’s story with all of us…..

  6. Amanda K

    Hey Maya,

    I haven’t commented much but you and your family are constantly in my thoughts. I hope you had some sweet dreams after this post.

  7. Glenda

    Maya… thinking of you, Rockstar Ronan, Woody, Liam & Quinn.

    Hope you’re enjoying SD…the beach…the sun… the pool. I’m so glad you have your girls there to keep you moving forward. Laughter is definitely the best medicine…if even for a few minutes a day.

    I hope you’ve been having sweet dreams with Ro. To the moon and back!

    XO

  8. sara maurer

    Thinking of you everyday. I am hoping and praying for some peace and strength for you and your family. I cried for you today…just wish it helped somehow. I’m so sorry.

    love,
    Sara

  9. Stacy

    Maya – I didn’t know the person you were before the diagnosis. I was inspired by the person you were during the fight for Ronan’s life. I am heartbroken for the woman you are on this very day. But know I’m excited about the possibilities for the survivor you are becoming with each and every torturous moment you get through. I’m pretty confident about the next evolution of Maya. M2012 is coming. And the world better get ready.

  10. Kk

    @Danielle: I’m pretty sure it’s the new Sally Hanson salon effects nail art… It comes in a box and comes in all types of designs!!;). Maya always knows how to rock the style!!;). Love ya mama!!

  11. Kim

    Maya-
    I lost my son a year and a half ago. He was 19 and the most beautiful, kind, loving soul I had ever known. He loved us like no teenage “man” should. Played with his siblings- all the way down to 5, unlike most teenagers would. He filled us with love and light. He had epilepsy. Siezures began in 8th grade. The doctor said we give him meds and they would go away. 5 years later, 2 brain surgeries, all the meds possible, they never stopped. He was so brave, never gave up, didn’t even really complain. We didn’t even “think” he could die- knew someday, years down the road, all of this would possibly be too damaging- but we knew he would be cured before that. I was supposed to pick him up from school. I couldn’t get in touch with him. I texted him. Gave him names and #’s he knew, had in his phone. That is how they found me. Told me he was “unconscious”. I wasn’t that worried. I thought he was just out of it from a seizure (they would leave him exhausted and confused) I joked with the ER lady when I arrived about something lame. She told me what was happening as she walked me to him. He was already gone. I couldn’t even really process her words. It was not real. I begged him to make it not real. I couldn’t stand telling my kids. I knew the minute I told them it was forever different. I picked them up early so I wouldn’t have to small talk w moms. I am so afraid they will always think someone is dead when I pick them up early 😦
    A year and a half later I am sad every day. I am also ok everyday. I have 4 kids here with me. We know joy, we laugh and we love, but we are all changed. All longing for something that will never be again. We are a good family. I have made life ok for us- but all you say simply is. I have no memory! The fog has lifted at this point, I can sit through a movie πŸ™‚ but concentration still doesn’t come easily. I do talk on the phone again (we unplugged ours), but not like I did before. All the stupid shit people care about is stupid. As time passes you will unfortunately catch yourself caring about the stupid shit too. Then you will remember how stupid it is and move on. I don’t want to be here either, but I want my whole family to go together πŸ™‚ and strangely, I want to live each moment to it’s fullest I don’t know anything and I know more than I ever wanted to. 😦
    Laughter helps. And you will have to do each thing for your family as you can and it feels right. There is no right way to so this. We take my sons ashes and leave a bit at all the important, meaningful places and that helps us, my whole family connect and honor. I will always keep some at home too. Kory sends us lady bugs. I am looking for little lady bug keepsakes to put a little of his ashes in his brothers and sisters rooms.
    I cannot imagine your ache. I have a 6 year old son that is attached to my body. At 3, we were not apart for a moment, let alone after fighting cancer together. I am certain there is not only a whole in your heart like there is in mine, but thy you must feel half your body has been cut off. Ronan is beautiful. His eyes are absurd. I read your post always, I am slightly obsessed with it. Thus loss ia lonely and I guess connection like this helps. I think you ate doing great. You are a good mommy an your best today is all anyone can ask. I donated to Ronan’s foundation- you, HE, is making a difference. He is so proud of you.
    Much love, Kim

  12. C

    I totally zoomed in on your nail polish, too! What IS that crazy cool stuff?

    My family and I think of Ronan and your family every day. Thank you for sharing with us. Our lives are forever changed.

  13. Maja

    “When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” ~Henri Nouwen

  14. Kerstin

    Dear Maya,

    I’ve been following your blogs, and my thoughts are always with you all. I like the exerpt (and your nail polish πŸ™‚ you posted from the book you’re reading. I know that in our Western world “dead” is equal to “gone,” but despite the risk of sounding like a nutcase, I’d like to tell you I’ve experienced otherwise. I’ve lost some friends and loved ones, too, but sometimes I can feel their presence. It’s as if some kind of energy is around you. They also appear in my dreams. Sometimes I think about a dear deceased friend, and a few minutes later his favorite song plays on the radio. These are just some of the “accidents” that remind us that our loved ones are still with us.

    I think we all know intuitively that death is just the end of our physical existence. Your little boy will always be with you. But you probably already know that πŸ™‚

    Take care,

    Kerstin

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