Barley Breathing


Ronan. Everything with you ended too quickly. I thought we would have so much time left together. We had so many plans to fight so long and so hard for you; until we got you better. We had plans for your brothers to spend the summer in NYC with us while we went through your treatments. I’ll never fully grasp how quickly things spiraled out of control. How quickly the tides turned and before I knew it your little life had slipped from my hands. I’d give anything to have you still here; fighting and all. Just to hear you laugh, to see your smile, to have you sleeping next to me. I still cannot fully sit back and think about our reality. I feel like a fish out of water and I have to fight for every breath I take. I’ve never had to focus on breathing in my life and now this takes up most of my day as I often feel like I am not getting enough oxygen to my brain. I now have to sit and making sure I am not going to suffocate and concentrate on getting air into my lungs. This is what it feels like to have you gone. Every second of the day I feel either numb or in so much pain that my body shakes and everything hurts.

Now that you are gone, I watch videos of you on my computer. I touch the screen, hoping that you will come out of my screen and magically appear in my room. You don’t. Instead I am flooded with hysterical sobbing that I cannot control. I don’t fight it. I take this time during the day to miss you so badly that I am inconsolable. I do this alone when nobody else is here. It’s better for me that way. I’m not ready to grieve for you in front of anyone else the way that I grieve for you alone. It is too painful for anyone else to see.

Yesterday, we did the usual stuff around here. We filled our day with errands and organizing things. I walked past your room and noticed your door was closed. I thought for a second it was you playing in your room, but then I remembered that you are gone. I opened up your door and peeked inside. It wasn’t you playing at all. It was Liam. He was sitting on your floor, alone, playing with your Star Wars guys. I cannot even think about this story without it destroying me. I asked him if he was o.k. He said he was, he was just playing. I let him be. I couldn’t even go and sit on the floor to be with him. I wish I could have, but I’m not ready for your room yet.

I went to breakfast with Tricia, Danille, Julie and Marisa yesterday. We sat at Taylors. The girls ate. I nibbled on some of Trish’s omelette and some of Danielle’s bagel. I sat with the girls and ended up crying about you, telling them that I just don’t know how we are all going to be alright. I wish I could say they had some words of wisdom; but they didn’t. And I’m glad they didn’t. That just goes to show what true friends they are. They know there are no words of wisdom for this and they know not to bullshit me. So instead, they sat and listened to me and got teary eyed instead. That was all I needed from them. After breakfast, I went with Danielle and Marisa to Kirland. All the book stores have disappeared around here so we had to go to the one out there. I wanted to get Liam and Quinn some chapter books to read for the summer. I missed you in the book store. I missed you as we walked past the fountain at Kirland. I remembered how the two of us would go there and I would let you run around in the water. I remembered how amazingly tan your skin would get from the sun. My little brown bear. So happy and carefree.

Liam and Quinn had a sleepover at Luca’s last night. Your daddy and I went out for Sushi with Uncle Jay, Charlene, Kenny and Stacy. I was sitting there, trying to enjoy the ambiance as hard as I possibly could. Good people, food, and atmosphere. I looked up and saw one of the doctors from PCH that works in the clinic. I cannot remember her name; but I’ll never forget her face. She was supposed to help us through transplant. I told you that you are everywhere. Stacy was trying to talk to me and I told her I couldn’t concentrate as I had just seen somebody from PCH. I needed a minute to compose myself and to talk myself out of running out of the restaurant screaming bloody murder. I sat and told Stacy how even sitting at dinner just seemed wrong. How could I be out, trying to do something normal like eating dinner when everything is wrong? To do something even remotely enjoyable feels like I am betraying you. I am hurting so badly inside that I should not be out in public at all. I feel like I should be standing in my imaginary hole in my backyard that somebody needs to dig for me so I can hide in it forever. I don’t want to be out, trying to eat sushi. But I know if I don’t, that is when the real trouble will begin. I know this so I talk myself into being brave and doing the things that are now so awkward and wrong to me. I do this to keep some sense of normalcy for you Daddy. So I can sit next to him in the booth and hold his hand. So I can make him feel like we are a part of something normal, together. I do this but I don’t like it. I wonder if I will ever be able to breathe normally again.  I wonder a lot of things, baby.

That is all I can write tonight as I need my mind to shut off tonight. I’m having lots of anxiety getting your brothers ready for summer. I have to pull it together for them as they need me more than ever. I know this.

G’nite my little man. I love you. I miss you. Sweet dreams.

xoxo

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21 thoughts on “Barley Breathing

  1. Jaime Harris

    I’m crying as i read this. It’s so terribly sad. I wish i could help you in some way. Remember that Ronan would want you to feel happy and do “normal” things. He had a happy, good although short life. He was and still is so loved by so many. He would want his mama to be okay. I am continuing to pray for you and your family. I hope you can have a good summer with your boys. Be patient with yourself, it’s going to take a long time to ever feel “ok” again. I’m so sorry for all you are dealing with and also needing to try to be strong for your hubby and the twins. I will keep you in my thoughts and prayers as I have been. Praying for strength and peace and hope for you and your family. I’m so sorry Maya. Just take comfort in the fact that you have a lot of people, some you don’t even know, praying for you and wishing you all the best!!

  2. Susan

    I wish more than anything that you could have your sweet little boy back in your arms. The pain the you expel from your posts is more then anyone should have to endure. And for the readers who have an issue with the F word, who cares. You write from your heart and if that’s what you want to say, please don’t worry about what anyone else thinks or says. I have not lost a child, but I am the mother of a child who had cancer (leukemia). I wish everyone would pay more attention to childhood cancer. As I watched celebrities on t.v. honoring Oprah, I couldn’t help but think, who’s honoring our children? Wishing, Hoping and Praying that you, your husband, Liam and Quinn can feel some kind of peace, knowing that little Ronan touched so many lives.

  3. Rosemary S.

    Dear Maya…let the tears flow. You grieve any ol’ way you need to! It’s ok. Hugs.

    I have a fairly large periennal flower garden in my yard. I have added a large red rose bush and some annual plants like impatients and some petunias…purples, pinks and whites. After I planted it all, it has rained for two days…it was like the sky opened up and fed the garden.

    I dedicated my garden to Ronan and will lovingly tend it all summer and fall until the flowers know that it’s time to tuck themselves away for the winter.

    I hope that today and the tomorrows that come next, will be kind to you. May your family be a soft place to fall for you. I wish you peace and happiness.

  4. Candi

    Just wanted you to know we are still here. Still praying for your family, for a cure, for some peace for you and your all your household.
    Everyday I read your blog I just want to reach out and hold you and tell you it will be all right and I know it never will… how can it. But as a Mother that is what we need to do isn’t it. We just want to make everything better, easy, safe. I just wish I could do that for you. I have never in my life seen such a brave women. I know you will, when
    this isn’t so raw come out on top and be the best Childrens Cancer advicate there ever will be and I will gladly stand with you!
    Hang in there!!! Enjoy the boys as much as your can, give yourself lots of healing time.
    Spend lots of love time with Woody one day you
    might wake up and not be in quite as much pain
    and see you have made it ove the first hill together.
    Blessings always!

  5. Stacey

    Keep processing… You’re doing great. If we end up in the same spot this summer, my boys and I might be those new people on the beach that help entertain your boys… And give you a few minutes to do nothing but soak up the sun.

    Hang in there. You’re amazing.

    All my best,
    Stacey

  6. Laura

    Just take it minute by minute, on foot in front of the other. You are doing remarkable, considering the major hole in your heart. Try to get ready for a summer with you boys. Your thoughts and emotions are so real. Call if you need to talk to another mother who has been there, no judgements. I’m so thankful you are letting you feelings out and not holding them in where they would eventually burst. You are truly remarkable and you will make it through this, just give yourself time. Do try to enjoy your beautiful boys this summer, they are probably your best healing tools..their love for you. Your entire family is in our thoughts and prayers.

  7. Annie :)

    Maya-
    This is going to sound crazy, so crazy actually that I am embarrassed to say it. I’ve been having a really hard time with the loss of Ronan. I cry everyday, I’m depressed and people are starting to see it. I don’t really talk about it because I don’t want to hear how silly I am for being so upset about a boy that I don’t even know. I have a Ronan shirt, and I wear his bracelet everywhere I go except my clinicals (because I’m not allowed). I’ve always prayed that he would come to you, that you could feel his love and know that he is safe. Normally I have like a sixth sense about things….the living, the sick, and those who’ve passed with your baby boy, everything has been way off. I just knew in my gut that he was going to pull through, that this was all set up so that he would find the cure one day. Since he’s been gone, I’ve kind of wanted to feel his presence, but I’ve asked that it only be sent to you, besides that he was just almost 4 and has no clue who I even am so why would he come to me? Well tonight, I sat there and started reading your blog from start to finish. I got as far as all of August and realized I needed to start my homework. I’ve decided to read a month’s worth everyday and I check for updates all the time. Seriously, like 20 times a day, I’m obsessed and it’s embarrassing. I left my computer to go into my bedroom and study, all of a sudden out of no where I hear this noise, something just randomly dropped in my bathroom. I told myself to go check my computer and if you updated, it was Ronan telling me to check it out. SURE ENOUGH!!!!!! I grab my computer and it’s already on your blog and it reads “Barely Breathing May 22, 2011” The last page I remember it being on was facebook. Your baby boy is around, you are right about that, and apparently he wants his story to be told just as bad as you do. Keep fighting to raise awareness and let’s find a cure!!!!! Thinking about you and your family always!

  8. -

    This song came to mind when reading this post. I know its about a break up, but thought you still might like it. Music for me sometimes evokes pain, but I think it can help the healing process.

  9. Stefanie

    @annie…. I am right there with you! This amazing, beautiful, little boy has consumed me. And I too feel so weird about it considering I’m a complete stranger. It just feels absolutely wrong that he is gone and I can’t accept it. It saddens me when I hear of any child passing away, but this just feels so wrong. I too sat and read this entire blog from beginning to present, it took me only 2 days, and now daily I wait for a new post hoping that it will change, like it was a bad dream or something. I just want this little boy back and happy and healthy for the world. I want to see his beautiful face and eyes alive and present. I just want things to be right again. You are so loved Ronan, by the world. I just wish that much love could bring this child back.

  10. RONANS FAN

    maya i know i write alot to you! But as Annie i cant get you out of my head! im becoming obsessed with spreading Ronans story, finding ways i can help out, wearing my Rockstar Ronan shirt asking people have you heard Ronans story! Some times i get oh ya ive heard, thats really sad and sometimes its “oh ill look it up” i just want to get his story out to anyone!
    i heard someone at the soccer fields the other day, bitching about this and that, and i kindly said “excuse me but youll know what a bad day is when you you read the blog of Ronan Sean Thompson and his daily struggle to live, i opened up my coat and said go to rockstarronan.com (i got the biggest glare) and walked away! Listening to such ignorance just fuckin pissed me off. I want the world to know about your son and his journey with NeuroBlastoma as i want the world to know about all these kids!
    I think of you Maya everyday, wondering how your doing, im so worried for you! Praying for you every night b4 bed, praying your Ronan will come to you in sweet pleasant dreams, and to hold your hand while you break down! I cant even to begin to imagine your loss, your pain, the feeling of being lost, not being able to breath, breaks my heart and i cant do a fucking thing to make it better. im one of the many who wish they could take your pain and sorrow and kick it in the ass!

    I just hope you continue to always write and talk about how your feeling (dont forget the f-bomb) you are truly amazing Maya, you and Ronan, Woody Quinn and Liam are forever close with out even realizing it!
    Hugs from longview!

  11. Irene

    Hi Maya,

    I only started reading your blog last week and I am drawn to reading it ever so often since then. Your words are so real and so true, it touches a deep nerve in me and I keep crying too when I read the recent posts. You are feeling so so painful and upset, it breaks my heart to read it. The more I read, the more scared and worried I feel… life is so unpredictable.

    I don’t know if now is the right time to ask you this, but I would like to find out more about neuroblastoma. Do you mind if I ask you more?

  12. Kate

    wishing i could stop your pain but knowing i cannot. i have no words other than look into liam and quinn’s eyes, feel their love for you and feel that they need you….let them slowly give you strength.

  13. Cheryl

    I am still here every day reading your blog while my heart breaks, and sadness overwhelms me. I continue to pray for your family and pray that you will find some peace within you. You are one awesome Mom, and your twins are so lucky to have you. Don’t worry about what other people say, you grieve any way you want. I am thinking about you always. Xoxo

  14. Glenda

    Maya… my heart aches for you and your family. You have to grieve your way, but remember that Woody, Quinn and Liam need you just as much as Ro did. Second by second, minute by minute. Baby steps mama bear!

    Thinking of you and sending you big hugs!
    XO

    Thinking of Rockstar Ro!!!

  15. Nikki Sullivan

    Maya,
    Every night as I lay my head on my pillow and close my eyes I think of your little Ronan. I pray that his love that is in your heart will get you through each moment of each day. Thinking of you and Ronan and keeping your entire family in my thoughts and prayers. Sincerely Nikki Sullivan (mother of three boys too).

  16. Vee

    Hi, I just found your blog today and as I read this post, tears run down my face. I know, I’ve been there. Please know that time does ease the pain. As I’m feeling now 5 years later it never goes away (and nor do you want it to) but you do eventually feel like life is worth living again.
    Thinking of you and your family.

  17. Pam

    This song breaks my heart and will always make me think of you and Ronan.
    I Confess, your kiss still knocks me off my legs
    First time I saw you was like a punch right through my chest
    I will forever, because you’ll forever be
    My one true broken heart, pieces inside of me
    And you forever, my baby

    You will rest your head, your strength wants saving
    And when you wake, you will fly away
    Holding tight to the legs of all your angels
    Goodbye my love into your blue blue eyes in your blue blue world
    You’re my baby blue

    I Confess, not quite ready to be left
    Still I know I gave my level best
    You give, you give, to this I can attest
    You made me, you made me, you and me forever baby

    You will rest your head, your strength wants saving
    And when you wake, you will fly away
    Holding tight to the legs of all your angels
    Goodbye my love into your blue blue eyes in your blue blue world

    You and me forever

  18. Sara

    I wish I had a magic wand and I could take all of this away. I am so sad, so heartbroken for you. I will continue to do my part in spreading the word about Neuroblastoma. You are such an amazing Mama, and you are always in my thoughts and prayers. May you and your family try to have sweet dreams tonight.

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