Burn baby, burn

Home. That’s where we are heading. No more hospitals, no more clinics, no more. As I sit here holding Ro on our flight home, all I can think about is, “Will this be his last airplane ride?” It can’t be possible. He was supposed to be coming with us, to Ireland soon. He was supposed to be going to Washington with us this summer. He was supposed to go on my most favorite family vacation to the San Juan Islands on the big boat that Papa Jim will drive. We were waiting until he was 4 to take him on this trip. This is the sickest, cruelest joke in the world. When did life become so hard? That’s the scariest thing; because everything changed overnight. I had no idea how precious life really was until all of this. I’ll say this over and over; I will always wish this was me and not him. I’ve done enough in my life to be fulfilled. He will never get the chance.

So after all of this, I’m sorry to say that if my baby boy goes, there is not a God. God would not do this to a child, a family, to a mother. God can fuck off. I’ve put all my faith out there I only to have it ripped away from me. If “God” takes away my child, I’m going to go burn down a mother fucking church. I’m going to go crazy and I have every right to. The pain that is in my heart will NEVER be healed. For those of you who want to judge me, think less of me for writing these words, or to wonder how I could say such things…. You are not allowed. You have not walked in my shoes, even if you think you have in some sort if way; you have not because you were never a mom to Ronan.

I am about to go home, to the only place Ronan wants to be. I am about to have the toughest conversation in my life with my twin boys. Ronan is their best friend and I am about to tell them the thing that they have feared the most. I’ve stopped eating as I have no appetite. It’s been 4 days now and the thought of food makes me sick to my stomach. I ate some cheese and crackers today only to get Woody off my back. Fuck all if this.

You don’t need to worry about my sanity, as it is gone. But as a mom I know it us my job to put on a very good show as to not traumatize my twins. I would never let them see this insane pain I am feeling. I love them too much. I know I will get through this, but now, sitting on this plane ride I am beyond angry. My emotions change from circumstance to circumstance. The moment I step off this flight, I will put back on my positivity shoes that seem to come off every now and again.

I want Ronan back. I want his hair, I want his healthy body, I want his laugh and bright eyes. I want his naughty trouble making soul that always reminded me of me. He is my little clone on the inside. The two of us never skipped a beat. You know who this is going to be the hardest on? My Quinn. Ronan and Quinn are closer that Quinn is to his twin brother, Liam. How us that even possible? Twins are supposed to have this crazy connection, which my two do; but it is nothing like the connection Ro and Quinn have.

There will come a time after all of this that I am going to go crazy, mark my words. It may take me jumping out if a fucking airplane, visiting some crazy country, running another marathon, but something is going to have to give. I’m not living a life full of limitations anymore and I’m not saying no to things that come my way. I’ve just walked through hell and back and I’m done with all the superficial bullshit that life has to offer. I will spend the rest of my life, helping others, not because it is good for my ego; but because I’m going to make a difference in this world and change the way people’s warped minds think. I will put every ounce into making sure my twins turn out to be just like their Dad; as there us not a better man in the world. I will make sure they know the meaning if living a life by their rules, as long as they don’t hurt others. I will guide them, love them, and we will never forget out Ronan who has forever changed our lives. They will be raised to have an impact in this world in honor of their brother. The most amazing little soul who has ever existed on this planet.

They will be taught to never judge people, as judgment is my least favorite quality in a person. Nobody has the right. They will grow up open-minded, respectful, fearless, honest, and I will support them, guide them, and love them with every bone in my body. I know that I am going to have to work extra hard to fulfill the love that they have missing from Ro. I am more than prepared to take on that task as these 8 months away from them have been horrific. This has been so unfair to them.

We made it home safe and sound. My little busy bees had everything perfect. I told Fernanda and Bethany I needed all new bedding for Ronan in my bed. All white, all calm, all peaceful, all new. He has been so sick in my bed for all this time; he deserves to now be surrounded by nothing but the softest sheets, pillows, blankets, white everything like a fluffy cloud. I asked for Fernanda to make me dinner so I wouldn’t have to worry about it. Done. I begged NY Miss Macy to get on a flight asap to spend the weekend with us. Done. Time is not on our side and nobody knows how much time we have left with Ronan. Anything I have asked of my friends, has been done and more and I will never be able to thank them enough. I hope they know how the only reason I am still standing is because of them. I would be so lost without them. Thank you my angels. You all know who you are.

We were met at the airport by somebody from Hospice whom I chose to ignore. So rude of me I know, but I am so numb and so in denial that I couldn’t do anything else. She came over to our house and I let Woody deal with her. I unpacked some of our things and just pretended like she wasn’t here. Woody asked if I wanted them here for the weekend. I told him no way and to make them leave a.s.a.p. My manners were nowhere in sight today and for that I apologize as I know at some point we are going to need them. But not yesterday, not this weekend. All I want is one normal weekend where I can pretend like this isn’t real. Which is why we didn’t have any talk with Liam and Quinn yet. Just one weekend is all I’m asking for where we can pretend like we are a normal, happy, family. Liam and Quinn deserve as much normal time at home with Ronan without having to know too much.

Auntie Karen and Liz came over to unpack for me. Heidi and Luke came by so Ronan could play with him as he has been begging to see Luke for days now. I sat and watched as the sweetest little 10-year-old boy cry over his worry for Ronan. I just told him I loved him and all that mattered was that Ronan was so happy to be home and so happy to be with Luke and his brothers. My dear, sweet friend, Aubrey (Dr. Maze) came by to give us his support. It was hard for me to look at him tonight as I had so much to say but nothing was appropriate with all the kiddos around. He sat and watched me buzz around, taking care of Ro, getting food for the kiddos, he watched the complete chaos of my life which I so love. I was so happy to have him here. He is a part of our family now. He loves Ro so much. After he left, I put Ronan in my bed and took the hottest bath alive.

Ronan and I fell asleep shortly after my bath. All cuddled up in our cloud of a bed. Thank you again girls. It was the most peaceful night of sleep that I have had in a very long time. We are up early… 5 a.m. Not sure why but Ronan was demanding that we get up. Whatever that boy wants, that boy gets. He’s watching “Mickey Mouse,” while I finish this post. We are going to the twins’ baseball game today and Woody is helping coach. Tricia and Macy are picking up Ronan and myself as I’m not sure if I can drive. Today we are going to be as normal as we can and normal now consists of giving Ronan morphine around the clock to keep him out of pain. My mom gets in today. Don’t know how I’m going to look her in the eyes. I’m so mad at everything and everyone about this. I’m not ready to let him go so soon. I pray that he stays with us as long as possible. I want to see my baby turn 4 on May 12. I want him here for Woody’s birthday on May 24th, for Tricia’s on May 25th, for Mother’s Day, whenever that is. I don’t want to spend this Mother’s Day without him. Please. Somebody listen. I have been on my knees, begging so much that they are bloody.

57 responses to “Burn baby, burn”

  1. Day 3 at a loss for words. I’m still sick about this, and can hardly eat, and I don’t even know you guys. I haven’t stopped thinking about Ronan or your family for a minute, and your story is all I’ve been talking about. Asking for prayers and spreading awareness. I wish I could do more. I wouldn’t blame you one bit for questioning a God. I’ve been doing the same since your post a few days ago; laying in bed wondering how on earth if there is a God that he would do this to a child. Your friends truly are angels, and they are just as lucky to have you as a friend! Give all of your friends and family hugs from us blog readers who are so thankful for all they do for you! I hope I can meet you one day and tell you in person how much you and Ronan have changed my life. I’ll be thinking about you guys constantly until your next post.

    1. i know what you mean amy, i don’t know them personally either but have followed their journery. i can’t sleep and i get sick to the stomach thinking about this all day. i wouldn’t wish this on anyone.

      i’m so amazed by the friends you have maya. they never cease to amaze me. you’re very lucky to be surrounded by the best people not only during this time but all time.

      i hope you enjoy your “normal” weekend to the fullest.

      thinking of you always!

  2. I hear you, and of course there is no judgement flowing from me other than to judge this entire situation as cruel, horribly and terribly cruel and unjust. For all of you. What more can be said? Here’s to a normal weekend together, enjoying that new cloud of a bed, a baseball game with your beautiful twins with you and Ro cheering them on, moments of laughter and leaning on friends. Still hoping for that miracle and will not give up on Ronan or you. Love, hugs, support to you.

  3. Maya – You are the strongest Mother I have read about or met, as a mother as well, you run circles around me and anyone I know. As for being pissed off….YOU DESERVE TO FEEL and SAY what you need to. This is a very cruel path you and your family are on. Judgment has no place here. I have often started comments and never posted but can no longer be silent. I cannot say any words to make you feel any better, so I am not going to try. Just know I will NEVER GIVE UP on Ronan, he is a SUPER ROCKSTAR and deserves to be honored at this very horrible time. I do not know you, personally, but this blog has been so amazing and real, I feel like I know you and your beautiful family. Maya, stay as strong as you can, you have every right to be pisssed, angry, non-beleiving, whatever you want. This is your space. Please know that you and your family will be in my prayers (or whatever you want to call it) for now and eternity.

    You can get through this, you are so amazing and seem to have a strong support system!

  4. If crazy is where you need to be then so be it! Have a great journey to “crazy” and i hope it is good for your soul, a soul that has stared evil in the eye….give it a smack in the ass for all of us who will probably not see what you’ve seen, in fact knock the shit out it! Crazy will be alright…Liam, Quinn, and Woody will make sure of it. Enjoy a beautiful, normal, nothing can touch your family day!

  5. Maya, your baby boy will see his 4th birthday and be by your side on Mother’s Day.

  6. Oh Maya, I’m listening and I wish I could take your pain away as well as Ronan’s but I can’t. Medicine has failed Ronan and God is failing Ronan. Thousands of people are praying for him, so why is He not listening! God has failed me once, because he took one of my babies way too early, at fifteen days old, but you don’t need to hear about my whole sob story. All I can do for you is spread Ronan’s story to get the word out for Pediatric cancer. Someone has to find a cure! Thank you for sharing your story with us and I hope you continue to do so. I’m still believing Ronan will receive his miracle. He has to, oh God he has too! Hugs ❤

  7. Maya, you won’t be alone when you burn down the church…& Aubrey is a delightfil soul with a radiant presence, his touch gives strength. I continue to pray and send light of serenity, miraculous healing and laughter to all especially to Luke. With sincere love.

  8. I hear you and I love you in your crazy Ronan’s Mom! I hear you and there is nothing I can do that will make a difference and in that I feel powerless and crazy. I have witnessed so many moms lose a son and I am a mother of a son, heard their gut wrenching cries, felt their sorrow reverberate through my body. Yet, it is not me experiencing this pain it is you. I am sorry. I am so very sorry. This is so cruel and unfair. I love you and I don’t care about your manners, I support your anger, your rage, your contempt, your feelings. . . I do so as I struggle to feel myself . . . I have those feelings too for different injustices. . . Go crazy and know that you have a fiery redheaded momma friend with her arms open wide and her heart present as a safety net to catch you.

    I am so sorry for you and your family and Ronan because what you have shared on this entire journey is the most passion and love that I have ever witnessed in cyber space and you have inspired me to be more of that in my life and in my home . . . in your loss you are giving so much.

    To teach me about judgment something I have suffered with and to pass that on to my family.

    You are brilliant. Ro is brilliant. He has served a divine purpose and fulfilled so much, so much grander than anything money and vacations can buy and yet the hurt of the loss of a child is the most pain on this planet I have ever witnessed — especially a mother to a son.

    1. And, one more thing having all of the love from a mommy is the best gift on this planet, one that money can’t buy. To be held to be said yes to, to feel your love is better than any earthly experience and will carry him into forever.

  9. I have no idea what to say! I know one thing. You have changed our lives forever. Ronan has changed our lives forever. I have been crying for days and everytime I put my kids to sleep I walk away and cry and I know it’s part sadness for you and part disbelief that this could be happening to a child and part thankfulness that my kids are healthy. I know that since this started I have not looked at my kids the same and I never will. I thank you for showing love and strength like no other person in this worls has or ever could. I too question God in these situation and I thought my faith was stronger, so no judgement here. Thank you for letting me; my whole family, love your son like he is part of our family. We will honestly will love him forever.

  10. I’m sorry you, the Thompson family and Baby Ro are experiencing this evil pain. Nobody deserves this, it isin’t fair, it’s not right. God is good and he is the only one that can get us through this type of ordeal and I pray God give you the strength to overcome this nightmare.
    When Job, a servant of God, was tested by Satan and suffered from lepracy and had everything taken away from him, his friends and his wife attempted to convince him that it was God causing his pain and that he should curse him. Job rejects that idea and prays that God have mercy on him, he was faithful, and for that reason, he was given 10 times everything he once had.
    John 3:16 “For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”
    If we have faith, God promises we will see our loved ones again.
    My dear Maya, everything is probably a blur and as a mother, my heart aches for you and your family. I am terribly sorry and I too wish I could take this pain away. Ronan is one of the most beautiful baby boys I have ever seen and just by looking in his beautiful blue eyes, I can see the testimony of a blessing, even if it is for a short period of time. His memory will be here forever, his legacy will continue, and you WILL win the fight against cancer by bringing awareness for others just like your little Rockstar. The Ronan Thompson foundation shall grow and be great because children deserve a voice and it’s not fair that little Ro is not getting that chance. I’m really, really, sorry.
    Curse cancer for it is EVIL.

    1. Thank you for the words I could not find…continued prayers for Ronan and famiy.

    2. Candyce Lindsay Avatar
      Candyce Lindsay

      I love Ronan and the light he brings to so many especially to your beautiful family Maya. I continue to pray and I thank kate for well stated words of which I could not form as well here. Continuing to pray for peace and comfort to all of the Thompson family. Candyce

  11. Maya,
    Thank you for saying exactly what you feel and think. If more people were honest like you, this world would be much more tolerable. I despise the pretenses of religiosity and am inspired by those who tell it like it is. It is awful your baby boy is so sick. He has an amazing mum.

  12. Hi sweet Maya…. You and your family are on my heart throughout each day and have been since I began reading your posts last summer after learning about Ronan through our mutual friend. I, along with so many I am sure, have been forever changed, truly, from your story.
    No one for a moment is judging you. It goes without saying that you have every right and then some to feel everything you are feeling. You have every right to question God, life, people…whatever it is you want to question. I do not believe for a second this is God’s will for your child, He is heartbroken. I think ‘God’s will’ is for everyone to be 100% healthy and whole; body, mind and spirit. I think environment, people, this world are the things that get in the way of that will for wholeness. I do not for a second believe that Ronan was ‘chosen’ for this…I do not believe God ‘gives’ people cancer or any other illness. I don’t think that ‘everything happens for a reason,’ and am now beyond sure that it DOES NOT. I do believe that God promises to keep us and hold us during times of trouble, (an understated description, I know), even when He seems beyond absent. The last thing you probably want to read is everyones take on what’s happening to you so forgive me if it’s a bit annoying or beyond horrible timing. I just wanted you to know how much your little Ronan has impacted people, that out of this disgusting hardship he has blessed so many. Not fair. I’d rather Ronan be blessed with 100% health and the rest of us have a warped perspective on things. I try to live each day honoring Ronan and your family. I am aware at how trivial everything else seems in comparison. Praying for you every moment. Much love~

    1. Maya – as many have already said here, I may not know you in person, but I feel I know you in my heart. As a fellow mom, wife, daughter… And Michele just posted what I couldn’t articulate myself… You and your family have changed the lives of so many people, for the better. EVERY single day I think of you all and that cute little boy… You will stay in my heart and my prayers, always. I’m so sorry for all of this.

  13. Maya, I want so much to offer you something, but having buried my own son not long ago I know that there’s no comfort in anything I can say or do. All I can know is that the world has been a better place for having Ronan in it and that will not change.

  14. simone atkinson Avatar
    simone atkinson

    I am so heartbroken for you that I have not known what to say. I hope you have faith if it helps you, but I agree that this God is cruel or useless. I have never believed in God, and Ronan is a shining example of why I don’t. I have never seen anyone with as much strength and grace as you have shown over the last months, and I admire you you beyond words. As a mother, I also have been awake these past few nights thinking of your family, and wishing there was something I could do.

  15. I hear your begging heart Maya..and it is about “kiddos”..my heart is still breaking for your family…keep us in touch with what is going on..when I was young I had a sister pass and my mom was very angry at God..He, my dear can deal with your anger…I know your kiddos are your first concern, so I know you can control some of what you feel…that is my concern..hope I am not offending you in saying that..just so sad for you all ..I care..it hurts to care..but I care.

  16. I wish I knew the words you need to hear so that you feel better, Ronan feels better… Love and light, oxox

  17. All I can say Maya, is that I love you and your family.
    We haven’t met as of yet but that may change someday.
    Keep loving like you do. It is all that you have to channel
    all of your feelings.
    Love and big hugs, D

  18. Patricia Scalise Avatar
    Patricia Scalise

    sweet baby girl..sweet mother…..you do everything that you and woody feel is right for your family………you are surrounded by love and concern from people that you know and people that you don’t………………….i want your family healed and my energy is being spent hoping for just that….anything less is unacceptable……….i’m ready to go punch a wall…i’ll add a swing for you

  19. Maya,

    Your honesty is refreshing and you have every right to be angry.

    While my heart breaks for you all I am also honored to allowed to walk alongside you all on this journey. I pray that one day, though I know it won’t be anytime soon, you are able to find peace.

    My thoughts and prayers will remain yours.

    Faith Cuellar

  20. Maya,

    Make the most of the fabulously normal weekend… take pictures. Laugh. Roll with puppies. Eat too much candy… Just love. Soak in the pleasure of Ronan and his innocent yet knowing spirit… Don’t miss a minute. No regrets. Not this weekend.

    Like others, I cry cathartically at each post with the remote hope that this perhaps, somehow, karmically releases some of your grief and angst.

    You are such a marvelous communicator and writer. Can’t help but think there’s something powerful that can be created through the notion that we are all “women joined by tears.” I speak for all of us when I say witnessing your journey has made us all better parents. More patient. More appreciative of the smaller moments. Better listers. Priorities first, technology and careers a distant second. The kids are first in heart, body and soul… and time. Where they always should have been…Ro’s time here has already made such a tremendous impact. That will continue… He’s a terrific little man that has somehow managed, without intention, to make us all better grown-ups. I am grateful for you… and still hoping for one big, goddamn, miracle.

    Best,
    Stacey

    1. Stacey…you said it perfectly. Ronan has made a difference in the way I live my everyday. His life will have an impact on my family forever.

  21. These last two posts are eating my soul and have me questioning why, oh why are there no answers to everyone’s pleads for a miracle. I support your anger, disbelief and judgement 100%. You have every right to voice what you feel. My heart hurts for your family and your incredible ROCK STAR. As a mother, grandmother, and godmother I feel your pain. I will continue to pray and ask for that miracle. My thoughts and prayers to you Maya, you are one incredible Mom. Give your family hugs for me, and give a special hug that beautiful Ronan.

  22. Maya, I am lost for words. I fell in love with Rockstar Ronans beautiful blue eyes and his family. Your honesty is raw. I love that about you . You keep it real and we feel your pain, love, laughter. Thanks for sharing Ro with all of us.

    I’m so happy for you that you have your army of girls… your angels there with open arms to catch you. I’d so be there for you if you were one of my friends. I don’t know you and I feel like I want to be there for you. That’s why I come back every single day to follow your journey. I go to bed and pray for Ro. Every.Single.Night! I pray for your strength and peace during this difficult time, for Woody, Liam and Quinn. For your families.

    I want a miracle!!!! for Rockstar Ro!!!! fight on lil man.

    Here’s to a weekend filled with love, and laughter. A weekend filled with normal things. Doing what Ro wants when he Ro’s.

    If you ever need any volunteers for any projects you plan to work on it the future… please count me in.

    Sending you hugs, love, and strength. Fight on Mama Bear!
    XO

  23. Thompson fam,
    So sorry to see your rockstar is going through this stupid cancer crap. You are an amazing mother and thankyou for sharing your blog w/us. I am still hoping for a miracle for your Ro.
    -Kelli

  24. I have been reading your story from almost day one. You are the strongest most amazing woman. Just know that no one that matters will judge you. You have been through hell and being angry is your right. Also know that most of us reading do not know you or your family personally but we feel like we do, and we care about you and your family. Your last few posts have touched me like no other, praying for your strength

  25. Maya and Woody,

    I am so sorry to hear the news about Ronan. I know there’s nothing anyone can say or do to ease your sorrow. However, please know that my heart is always with you as you head down this unforgiving path. I pray you find solace in the family and friends that provide you comfort during this difficult time. You are wonderful parents to your boys and the world is a better place for it.

    Your family’s steadfast love and togertherness has made a mark on this world and all of our lives. I know this is little consolation to you and I completely understand, but your son’s journey has left footprints on all of our hearts and we’ll never be the same.

    I wish you peace and love as you endure the difficult weeks ahead. Our family will always be here if you need us…it’s unconditional.

    Best,

    Larry White

  26. Maya,
    Like so many others I have been with you, reading your posts religiously. I have cried, laughed and wished on every shooting star. Lately there has been so much more crying and it made me think about why I continue to read your blog. To be honest, in the past I have been a coward and turned a blind eye to pain. It was easy to avoid life and its “rawness” by simply pretending sadness didn’t exist. So why did I continue to read your blog?
    Simply put…for inspiration. I am a new mom and this job is new to me. You inspire me to show my daughter love in a way I have never seen before. You show me the truth behind the words family first.
    I hate every painful second that your family is enduring. It is absolutely unfair.
    Ronan’s face is forever etched in my mind as a symbol of love, strength, beauty and compassion (with a little feisty mixed in too).
    Continue to be the amazing women you are!
    Hugs and strength,
    Erin

  27. Ananda Dasi Nicole Billa Avatar
    Ananda Dasi Nicole Billa

    You have the right to feel everything you want to feel. I have never met you or your family, yet I have been crying my eyes out since I read your news. Last night I thought about you guys and was so pissed off I threw something very heavy and hard at the wall.
    There have been times, many times, since my son’s illness when the only thing that kept me going was my children and not wanting to leave them. That’s all you need. And you will serve, because in the face of such incredible suffering you know that the only thing, the ONLY thing, that matters is the kindness and the light we can bring to others. May you all be wrapped in a blanket of love and comfort.

  28. I am sick that you are having to walk this horrid path, maya. Your feelings Nd thoughts are so beyond valid. Your boys are so incredibly lucky to have you as their mama!

  29. Maya, I’ve spent several hours on here reading about the journey with Ronan and I can understand your raw emotions. I’ve seen this first hand through losing our 2 1/2 yr old neice Nov 23, 2010 to this same horrible disease. I can truly appreciate your feelings and the anger you’re feeling, because I seen what Sierras parents as well as family went through and still deal with daily. I want you to know NO ONE has a right to judge you or tell you how you should be feeling. You know how you feel and you have every right to be pissed off at the world. Maya, Ronan is beautiful and he has touched so many lifes! You have a wonderful family who will help you through everything. Maya please know we are all praying for you and your family. Pam Fanning

  30. Cancer is so limited…
    It cannot cripple love.
    It cannot shatter hope.
    It cannot corrode faith.
    It cannot eat away peace.
    It cannot destroy confidence.
    It cannot kill friendship.
    It cannot shut out memories.
    It cannot silence courage.
    It cannot reduce eternal life.
    It cannot quench the Spirit.

    1. Ananda Dasi Nicole Billa Avatar
      Ananda Dasi Nicole Billa

      I have to disagree. My son had cancer and it did all of those things and more. The list of what I have lost is too long.
      All I have to say is , F*** cancer. It sucks. It does not have a reason, we can’t bear it, and we shouldn’t have to.

      1. Ananda, I’m so sorry for your loss. So. Very. Sorry.

      2. Ananda Dasi Nicole Billa Avatar
        Ananda Dasi Nicole Billa

        I’m sorry; I didn’t make it clear. I didn’t lose my son and didn’t mean to imply that I did. What we have gone through is nothing- nothing- compared to what Ronan and his family are going through. We have our son. But that poem has always bothered me, because our son’s illness destroyed all of those things, some forever and some not. I lost my faith. I lost my best friends. I lost all confidence in the world. I lost hope. I live in fear of recurrence. I lost my career. My son is almost eleven and has the eyes of an old man. No child should have to spend time on the cancer floor. Our lives are very different from what they were before. In some ways richer; but in many ways far, far harder. And we had a good outcome.

  31. I know you are angry. I have been there. But I have had a long time to think things thru & if I want to see my child in heaven, I had to let go of my anger. I want to spend eternity with him and with God & I cannot if I turn away from God.
    God is not doing this to your child. We live in a fallen world and cancer is an ugly part of this world that is not perfect. When we get to heaven & see our children, we will be able to get our answers & see the pattern of all our lives. Sure God could cure our kids, but believe me…there is a purpose that we cannot see for what we are going through. It may not be something for our children or for us to see now, but there is a reason for everything.
    Praying for you. Been there in a similar way.
    Kay

  32. Hi Maya,

    I contacted a few photographers that are part of a GREAT organization called Now I Lay me Down to Sleep, on behalf of you. Sorry if you feel this is stepping boundaries, however if you have not heard from them, I wanted to make the suggestion of finding a photographer in your area to honor your family!! I am a photographer, and any time there I have a friend, or family member that is ill, I ask if I can photograph their family to give them memories that will last forever! Even though there is a lot of sadness in the shoots, the love is so present in the pictures and I have been told by people that, they are so happy they have the pictures, and something they would have NEVER thought about!

    I cant offer you anything else besides what I did. Nothing I can so can make you feel better!

    Sending lots and lots of hugs your way.

  33. Ananda Dasi Nicole Billa Avatar
    Ananda Dasi Nicole Billa

    I would give anything to strengthen you right now. Please know there is a mother in NJ, who has a son who had cancer, and I swear i would take all of your pain if that were possible. I will be singing the songs of God (in my tradition, which is kind of Hindu American Yoga) in for you and Ronan and your family, all day long.
    And when it’s time to burn, let me throw a match onto the fire.

  34. jennifer Benedict Avatar
    jennifer Benedict

    You will not receive any judgement from me only support. As a Mom I cannot wrap my mind around the kind of pain and anger you are dealing with and thankfully many can say the same so we have NO right to judge you as you are the one going through a Mothers worst nightmare. I also won’t give up & I will use all my Prayers to beg God for a miracle. What is important is that YOU do know what is right for your family and son and that is what you are doing, what is right for them and to me it’s the best you can do and while you care for them we will keep Praying, fighting for and supporting all of you! There are so many of us that have fallen in Love with your sweet little boy and all the rest of you too! Stay strong

  35. If someone could grant me one wish right now it would be peace for your family – For Ronan to wake up tomorrow healed. My dad was taken from me due to FUCKING CANCER!…and I remember that moment when they give you the timeline and the spill of how you need to spend every day like its the last .. blah blah blah. Where, as if the whole thing wasn’t enough to handle, now you feel like that last little bit of “guts” inside you is officially ripped out. I sit here and remember that feeling and think … “How does she function” because my loss was my dad .. not my child. You are entitled to whatever feelings you have because you’re right .. No one is feeling like you do. No one else is that precious little guys mom. I asked for prayers on my facebook today for your family … because honestly I’m tired of hearing how everyone’s blessed because they got a new job, a new home, etc .. but that’s nothing compared to health of an individual .. especially a child. I asked them .. since GOD listens to them .. to please pray for you and Ronan. I told them that if you feel you don’t have time to read his story then really all you need to know is he’s 3 years old .. has cancer .. and needs a miracle .. enough said.
    I really don’t know what to say .. cuz honestly nothing makes it better .. and sometimes words from people just get annoying. So all I can say is .. Keep fighting .. keep rocking and keep trying to kick the shit out of that evil cancer .. because its not over yet!! much love and prayers for you and your family. xoxoxox!!!!!!!

  36. Jennifer Tayman Avatar
    Jennifer Tayman

    I am heartbroken and full of sadness for you and your family. No matter what the outcome of this terrible journey, never forget one thing, Ronan has changed the world. At least my small world in CT, because of him, a gorgeous boy I’ve never met, I hug my little boy a little tighter and I have opened my eyes to the little things. Maya, you are a wonderful mother and you have such a beautiful soul. Please know there are many of us out here in pain with you and wishing there was something we could do to ease your pain. Spend this weekend and the upcoming days saying and doing whatever your heart tells you! Your have every right and there is no judgement here. Hugs & love from CT.

  37. Maya,

    This is the first post I have read. My wife has been following your story for some time now and has told me about posts once or twice. Now of course I have not been in your shoes. I do have 2 girls of my own, 10 and 6, and could not imagine anything happening to them. Especially something that I would have no control over. Right now I have 2 friends that are carrying a baby that they know will die as soon as it is born. We are praying for a miracle and I hope that for you too. But you have been blessed to have the time that you have had with your child. God has given you every one of those days. Every breath that you breath has been given by Him. So to tell you that all things work together for the good would be silly because of your situation. That does nothing to help you and honestly there is nothing that I can say. I hate what you are going through but I know that to blame God is not the right thing to do. Someone above said that we live in a fallen world and God intended us never to die but since the garden and the original sin the world is in a constant state of decay. Everything is dying. We don’t understand why. We aren’t supposed to. Why would God use a tsunami to wipe out entire cities? The answer is God doesn’t.
    So please, I do not mean to make anyone on here angry. Just from one parent to another. Grieve. Grieve like you’ve never done before. But thank God for the time that you’ve had. The memories that you’ve made. The lives you have changed through this blog. The hope that you bring to others that they can make it through this struggle also.
    I have friends who won’t be able to do any of that. And they believe God has a plan.
    I’ll pray for you.

  38. All our troubles
    And all our tears
    God our hope
    He has overcome

    All our failures
    And all our fear
    God our love
    He has overcome

    God our justice
    God our grace
    God our freedom
    He has overcome

    God our refuge
    God our strength
    God is with us
    He has overcome

    I wish I would’ve included this on my previous post. This is not mine. It is a song by a group called Hillsong. Look them up on youtube. These words are true. The song is called Take Heart.

  39. i’m praying for peace and strength for you. your story has inspired me in so many ways. my son is new to this world and now at 6 months in i hope to be half the mother you are, for that would be a feet in itself. i wish for nothing but a weekend filled with normalcy and love for you and your family.
    song for the night: Just Breath-Pearl Jam

  40. I do not know you, but I can’t imagine the immense pain that you must be in. My husband and I have been in tears all day after reading about your journey. We pray that you feel the love of everyone pouring in for you and your family. We pray that it surrounds you and gives you even just an ounce of comfort in these precious moments you have with your son. You are an amazing woman for sharing your journey.

  41. Here’s a pack of matches my sweet….Feel what you need to feel. Say what you need to say. Scream what you need to scream. There is no rule book. There is no reason. There are no words.

    I think everyone who comments on this blog does so because you have exposed yourself through this ugly fight as an amazingly loving, introspective, and insightful person who we all have grown very protective of. You really have touched alot of people.

    Still holding out for a miracle.

    M

  42. Maya,
    I can’t stop thinking about Ronan and your family. Everytime I look at my kids I tear up. I can’t imagine going through what you are going through. It completely breaks my heart and makes me SO mad! I hate that it’s taken this happening for so many of us to appreciate the small things in life and to become better parents because of it. I find myself hugging my kids tighter and feeling guilty when I get upset with them over non important matters. Ronan is an amazing, beautiful boy and this just is NOT fair!! Ro will always be in our hearts.
    xo

  43. I was with my grandkids today, and I hugged them much longer than usual…until they thought I was nuts. I was hugging them and praying a prayer for them…and for Ronan. Please God, let life be long ~ for all children.
    Miracles happen every single day. I will hold on to that for you.
    (Please, try to nourish your body so that you can have the strength to do what you need to do each day.)
    Loving thoughts…

  44. As I read your post this morning, tears fill my eyes, yet again. Again, my son has neuroblastoma and we’re dealing with it every day. A little story ~ my husband didn’t believe in God. He was so angry at the world that he refused to think God could do such a thing as to bring the storms we had in Florida in 2004. He questioned everything. A couple years after that, i almost lost my husband to an arc strike from where he went into a panel to work on it. (he is an electrician). I worked at the hospital where he was brought to and I got the call. Our life passed before my eyes on that 2 minute walk that usually takes 10. His entire face was burned. He was taken to a burn unit in Tampa. He fell 2 stories from a ladder, yes, while working. Anyway, the night we were told my 10 week old son had cancer, he was standing by his our son’s bed crying. I went up to him and hugged him and told him that there is something out there higher than what he thought he believed in and he should try finding it. He left and didn’t come back for a looooong time. My husband is now saved, baptized, and joined church. We have gotten good news. We have gotten bad news. Everything that we have been told, we just faced it head on as you and your husband have. I had no control over what was happening to my son. I only want him with me and that’s somewhat selfish as some would say. But, I gave the entire situation to God. Now, I’m not saying you shouldn’t be mad. I’d be mad as Hell. Just that this anger you have will in turn bounce off to your Warrior Prince Ronan. He feels that. Take a long deep breath and be as normal of a family as possible….for Rona’s sake. You are all he knows and will ever know. Be thankful for the time you have with him. This little guy has a purpose in life. I said that about my son. If only to bring me pure joy for the time he’s in my life, that’s all that matters. Love him. Kiss him. Talk to him. I will never put myself in your shoes. I cannot feel what you’re feeling for that is your son. Just be…….Just be a family. Love and prayers from Florida.

  45. super-420-mom@hotmail.com Avatar
    super-420-mom@hotmail.com

    as i read your post i cant begin to imagine the pain your going thru, the tears i cry can never even come close to tears and the pain you cry for your sweet boy! its so unfair for GOD to put sweet Ronan thru this let alone any child! your strength is beyond and your courage to push thru and tell cancer to FUCK OFF is amazing, it has to be so difficult to put a smile like its all okay knowing in your heart the pain all of you are going thru! THIS IS SOOO UNFAIR! WHY????? What is the reason for this to happen, and there is no reason, NO REASON AT ALL!~ this shouldnt be happening to the sweetest bright eyed little boy, but i can tell you bcuz of Ronan that alot of people are holding there children closer telling them they love them realizing that theres so much more in the world and that the little things are so minor! Your family really have touched SO many lives! Even tho i only know you thru school maya i feel like i know your family thru your post and you are an amazing mom the best Ronan could ever of asked for! keeping your family close to my heart! Blessings over each and everyone of you!

  46. My love and wishes for a normal family weekend. All our love and prayers for your entire family.

  47. Heather Baumann Kau Avatar
    Heather Baumann Kau

    My heart is just breaking at the pain your family must be experiencing right now. We all know you have done everything in your power to find a cure for your beautiful child! I pray that you will find peace in your heart and with God, so that one day- the memory of your little angel here on earth will feel like a blessing and not something God did to punish you, or hurt you. You are right that none of this is something I have gone through, so I don’t know how I would react completely… but I do know that God will listen to everything- even your cries of anger and longing. You can take it all to Him, my dear- and know that Ronan will find comfort in His arms when it is time to say good-bye.
    I send my love and my prayers- Heather

  48. You are an amazing mom and you give me the power to love my children more. yes there is a god but he decides when it is time to take us home to live with him. please help your son feel like it is okay to go when it is his time. He doesn’t want to let you go either. he does not want to disappoint you. No child wants to say goodbye to their parents. I hope you can understand that I am only speaking out of love for you and your awesome family. I feel your pain and I feel your anger. This is not about god. This is about personal growth.This is about you teaching your son that it is okay to let go. Not to be afraid of the unknown, and not to be afraid to leave you alone and in pain. you are strong and you will see him again if the worst happens and heavenly father takes him home. Don’t be mad at god. we all have to face challenges in this life. I can’t imagine why your precious boy should have to go but if it is gods will we can’t change it. Ronan is counting on you to tell him it is ok to go if that is what he needs to do. So be strong for him and do what is best for him. I love you though I have only gotten to know you through your opening up to the world. you are a smart courageous family. I know your family will be together again. this life is only for a short time. Eternity lasts forever. That is how long you will be with your family in the afterlife. Please dont lose faith. You need to grieve. I am still grieving and no time does not make things better. It makes it hurt worse in a way. But remember you will see him again. In heaven there is no pain. No cancer and just pure happiness. I know you want that for your son. Teach him about heaven, It’s time to prepare him die. That sounds cruel, But it is your duty to teach him, you are his mommy. he is waiting for you to be okay.

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