Music to my ears


I’m feeling peaceful tonight. Today, was a very good day in terms of victories for Ronan. It started off with his little words this morning, “Mom, I have to poop.” Praise the freaking lord. It’s been 5 days of him not pooping and we have been giving him Miralax around the clock. I full on had a pooping party dance after my little man did his job. Victory! He was up most of the day, although still in a lot of pain. This morning, our sweet, “A,” from the clinic came by. She sat with us for a while and Ronan normally kicks everyone out, but he was so calm while she was here. He connects with her. Playroom Kathy from PCH also came by with so many Star Wars toys and the most beautiful Star Wars quilt which I am assuming she made. Kathy, it is so gorgeous. Ronan has been playing with his Star Wars guys on it all day. Love you so much. Thank you for sharing your smile with me today. I’m only sorry Ro missed it due to him sleeping. My sweet friend, Kristen, Kati, and Olivia came by as well. It was good to see them all. The usual peeps were here too. My mom, Jim, Luke, Heidi, Liam, Mimi, Papa, Auntie Karen, Trish, Stacy, Fernanda, Gay, and Pam. Christy and Heidi stopped by too with a ton of food. I’m feeling a little braver about seeing people so I ventured outside of our room. Ronan is so loved. I’ve never seen so much love for one little boy in my entire life. It makes me feel so happy.

We have been talking to Dr. Sholler about some other treatment options. I told you we are exhausting anything possible. We are talking about doing radiation on his leg. I’m not giving up yet if there is even the smallest amount of hope. I won’t travel far with him, but if this doctor is willing to see us in San Diego, we are talking about making the trip. We may start radiation tomorrow on his leg. Anything to help him with his pain. We are not committing to anything yet, as we know what the odds are. But we are not willing to close the door just yet. Ronan wants to be here with us and we are going to continue to fight hard for him until he lets us know otherwise. I will know, as his mama, when it is time to let go. It’s not time yet.

I got out for a bit tonight. I was nervous about it but Woody insisted it was fine. I had the chance to call back a couple of people. My angel, Charisma, is flying in this weekend for a quick visit even though she is bombarded with auditions. YAY FOR THAT!!!! Both her coming, and the auditions that are coming her way. I cannot wait to see her and am so grateful that she knows how much it means to me to see her. I called back my other dear friend, Susie, who lives in Colorado. All I had to do was say the words and she is now coming in for a quick visit this weekend as well. I don’t know how much time we have left with Ronan. Could be days, weeks, months….. praying for forever. Regardless, it means a lot to me to have those two see him. It will be good for me as well. It felt good to be out, tonight, breathing in the fresh air, as I sat outside with my dear friend who brings me much peace and comfort. I even managed to eat a taco for him.

I came back to the Ryan house and Ronan has just finished his platelet transfusion. Luke and Quinn were in the room with him and we all sat around together while Luke played music from my iPad for Ronan. Luke was being his normal, very animated self, and was singing and dancing out loud. I could not believe my ears when I heard giggles coming from Ronan. He has not laughed in at least a week. It was all thanks to Luke. I about started bawling. My baby boy is still in there. As much as he is hurting, he so badly wants to come back to us. I heard it in his laugh tonight. I will never forget that moment. Luke has been such a gift to us during this time. He brings our family so much happiness, especially Ronan. He is sleeping over at The Ryan House tonight, as well as the twins. We all need to be together as much as possible.

I’m tired tonight and as I said, I’m feeling somewhat peaceful. I’m going to try to get a little bit of sleep before Dr. Maze and everyone else kicks my ass. I’m not taking my sleeping medicine anymore, but tonight I feel like I can maybe sleep without them.

Somebody posted me this comment on my blog tonight. Loved it and wanted to share. Thank you, friend whom I do not know.

I read your latest blog “the next person that tells me…” I just want to say Sorry for those of us that are inconsiderate with our words and try to say things to make us feel better before we think of how they may affect you. I share your blogs on my facebook and ask my friends to pray for you. I wear a bracelet daily so when I see it I remember to pray for you often. My heart aches for you. My sister recently lost her granddaughter and posted this comment about people speaking, I thought you would appreciate it. She added your comment to her previous post to reiterate the impact of commenting before we think about it.

Before you speak…
by Connie Phelan Iddings on Tuesday, May 3, 2011 at 12:00pm
“Everything happens for a reason.You were given this because you were strong enough to handle this. God has a greater plan for your child. Your child wants to go home, where he belongs in Heaven, so just let him go. At least you had as long as you did with her and you have other grandchildren, at least you can be grateful for that. You’ll be a better, stronger person because of all of this. ”

These are comments given to a Mother whose child is battling for his life and to other Mother’s and Grandmother’s who have lost their babies.

Think about it. Seriously. Stop and think about it. To a Mom and to a Grandma, there simply does not exist any justifiable “reason” for our babies to suffer and die.

I am sure that God is taking care of our babes, but when you say God had a better plan, what exactly are you implying? That we somehow didn’t deserve our children-our parenting plan didn’t suffice while millions of others did? That God handpicked our babies to pluck out of our arms because he had a better plan? God is not cruel. His plan is to bless and not to harm us. (Jeremiah 29:11) I’m pretty sure it had very little to do with “God’s perfect plan.” I like how William P. Young author of The Shack puts it,

“Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies. Don’t
ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn’t depend on suffering to exist, but where there is suffering you will find grace in many facets and colors.”

Never tell a parent their child is better off or tell a mother that her child wanted to leave her even to go to heaven, it’s like sticking a knife in her already broken heart. We don’t want our children to suffer. No good mother does. But, to add guilt to her grief by suggesting she is being selfish for going to any and every length to help her child survive and for wanting to hold onto her child as long as absolutely possible is unforgivable.

Don’t think for one moment that we aren’t eternally grateful for every millisecond of time we were given. Whether it is a few moments, or decades it matter not, our baby is now gone. We are grateful for all the yesterdays but we still want the tomorrow’s. We want our children with us today, right now and would give absolutely anything to have them.

Don’t get us wrong, we love and are grateful for all our children and grandchildren that are still with us, as we’ll also be for those we’ll be blessed with in the future, but that does not diminish our love or desire for those lost.

Please never, ever tell a grieving Parent or Grandparent that they will be stronger, better people because of the death of their child. No one wants to benefit from the death of a child. We know you mean well, but it plants thoughts in our mind like, “What if I was a stronger and better person to begin with? Would my baby have been spared?” Is that your intention? I highly doubt it.

Before you speak, pause to hug us and think. Tell us you are sorry. Let us cry and talk as much and as often about our baby without being made to feel guilty that you feel uncomfortable. Please don’t tell us that you think it is time we move on, leave that to the well-trained therapists. Our grief may remind you that we live in a world where children die before they are suppose to; a fact you may want to forget, but we don’t want anyone to forget our babies. We also don’t want anyone else to suffer needlessly if there is anything we can do about it. Therefore, we will keep talking about our children and about their death if we think it will help someone. It is important for everyone that we do.

We know it is difficult. Believe me, we know! We understand most people have no idea what to say or that some things are far more hurtful to say than they ever realized. I tell you now so that you will know. I, myself most likely said these very statements in an attempt to comfort others in their grief and offer answers for questions we all have, that there are simply no answers to-at least for now.

I close with a statement from a grieving Mother, “I love you all as always, as long as you don’t say any of those idiotic things…to me. Even if you think them, please don’t say them. They don’t give me strength at all.”

Strength is what we need and what we need more than all is your unconditional love. Before you speak, pause and just give us your love.

God Bless, my prayers are with you continually

G’nite to you all. Ronan and I love you to the moon and back.

xoxo

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76 thoughts on “Music to my ears

  1. Jenni Levine

    Ronan – You have nestled your way in my heart…I feel so connected to you through your loving Mommy’s blogs. Also – I too am VERY hopeful…and I know you must get your strength from your Mommy and Daddy, sweet brothers – Liam and Quinn – and VERY special other family members and friends. We are all in this together…and tell your Mommy that if she needs ANYTHING at all – even though I am a complete stranger…I am here – for anything at all. As she supports you – we are here to support her and your family. Hugs to you sweet Ronan!

    Your pal – Jake’s Mom in Scottsdale,

    Jenni Levine

  2. Nicole

    So happy to hear about the poop!!!! Sending you love endlessly. You are all that I can think about. May love surround your entire family. May it comfort you and help you fight this hell of a fight.

  3. Laura beth

    You are the most epic example of a wonderful mother Maya! There are no words in the world to describe how my heart aches for you and your family! But know that tonight as I lay my head on my pillow I pray for Ronan and that tomorrow is a brighter day for you perfect little family! With so much love and hope- Laura from WA. State

  4. K.M

    Your Mama instincts were right, he’s not going anywhere! I knew it, it’s just not happening. His laugh, his poop, his playing, this all just makes me smile! It’s no where near over. Cancer has never met a RONAN S. THOMPSON! Obviously there are going to be bad days but that does not mean he will not heal. I read that post last night that you re-posted today. It was so touching and so obviously written by someone who has lost something precious, God Bless her & her words. Ronan has more heart than 1000 men twice his size! Kick Ass Ro! San Diego will have the answers & I bet he would love to have an adventure on the beach!

  5. Susan

    I am not super religious person – but I went yesterday to church here where mircales have supposedly happened throughout history. People make a pilgrimage here just to pray here… (am an american living in europe – belgium) So I lit a candle and said a prayer for Ronan….

  6. amanda

    Oh, the power of a child’s giggle! Thanks, Luke, you are a healer…a great blessing to your family. Maya, you have an amazing network of friends in your life…it is awesome! It is a testament to the kind of people you are. Please, if there is anything I can do here in San Diego, don’t hesitate to ask. Prayers in abundance for your miracle!

  7. Heather

    I am sending all of the positive thoughts, vibes and many many prayers as I possibly can. Ronan, hang in there buddy and keep smiling little one! Its amazing how a family that I uave never met or heard of until a few days ago can touch my life and heart so dramatically. Ronans story inspired me to become a bone marrow donor. I don’t know what you look like but I can feel your spirit and I hold you & your little boy and pray over you. Hope that tomorrow brings more smiles & sunshine!!

  8. Melissa Sager

    Man oh man…can I just say that the comment she posted hit it out of the park for sure. Hearing everyone bash god for him wanting and/or choosing to take our children for his own selfish reasons was really killing me inside, and I am far from a religious person, but I do feel like I know our god and he for one is never selfish…he hurts when we hurt…just as a mother does for her child. I am so glad this comment was posted…it helped lift my heavy heart in this situation. I went to highschool with Maya in kelso…and she was an amazing loving person then. I really can not imagine for a second and will not tell you I do, know what she and her family are going through. I am one of those people who listen to radio-a-thons for Childrens hospitals and bawl my eyes out, which following every single word Maya says makes me: cry, smile, laugh and every other emotion possible…I read these blogs every night…and pray to god every night that a miracle is sent from the heavens above…because it’s so cruel and unfair. I do have to selfishly and shamefully admit that I have taken my children for granted…and in the last eight months I have come to watch them play…and listen to every word they say…and everytime I do…I pray for Ronan and his family. I have prayed more in the last year than I EVER have…but it has helped me find god in a way that I never knew he exsisted. I’m sorry this is all over the place and so unorganized…as I am nervous for some reason to post this as I have tried to stay quiet and just posting comments on Ronans pics on fb…but this blog post motivated me beyond belief. I just would like to say one more thought to Maya…you have opened a new light on what being a mother really is, you have awakened something in me as a mother to strive to be, even though at this moment in time, my children are healthy. I have promised to never take my children for granted as long as they are safe on this earth…and if this means nothing else other than that…you should be so proud! We love you sooo much Maya and your family…Chris and I feel as if we are right there with you in every blog plost you write. Sweet dreams

  9. Therese in Ireland

    It’s so nice to see that you’re feeling a little bit more peaceful – thanks be to God. That little man of yours is like no other, what an absolutely amazing little fighter. He gets his strength from his Mum you know, you’ve taught him well. And what an absolute gift to hear him giggle – simply beyond belief. You obviously know by now that thousands of people are behind you, supporting you, praying and wishing for peace and comfort for all of you. You do what you have to do and again, thank you so much for keeping us all informed. Your little man (and your two bigger little men!) have completely stolen my heart and they have the most wonderful Mum and Dad. Strength and peace.

  10. Rachel

    Dear Maya –
    Thank you for sharing this with us. Not just tonight’s entry, but all your thoughts and feelings as you experience this complete nightmare. I pray for Ronan and all of your family everyday, and find myself constantly looking back here for some small update or sign of peace and hope for you all. You have put to words exactly what I imagine we as parents know, but don’t sallow ourselves to say when we say “I can’t imagine how parents of kids with cancer do it?” I have shared your blog with many of my friends and family because at any point the unimaginable could become our reality and we need to treasure the time that it isn’t. Your words are a gift to us all, thank you.

  11. Laura

    So very happy of where you all are emotionally. Cheerish each moment together..it is what each of us should do appreciate the little precious moments a smile, a laugh and yes a poop. So glad that this is a good day. Still praying for miracles, you all truly deserve one. All our love to your entire family, glad you are together. Sweet dreams beautiful Momma Maya. Our prayers and love are always with you all.

  12. Sonja

    THANK GOD!!! Where there’s breath, there is hope. I won’t stop believing, hoping and praying! Miracles DO happen and I continue to pray that Ronan is healed. Thank you so much for sharing your journey with us.

  13. jenn

    It is so good to hear Ronan had a good day,and that your feeling peaceful. As I said in other posts I have seen miracles happen ,My friends daughter was on life support with holes in her lungs.She was so bad a priest had read her last rights and everyone was praying she would be ok. She woke up from her drug indused coma and no longer had anything wrong with her lungs and even the doctors said it was a miracle as they couldn’t explain how it was possible for her to even be awake. So please hang in there and I like everyone reading your blog will continue to pray for Ronan to be fully healed. Your little blue eyed baby has stolen the hearts of many including myself…praying for more good days to come!!

  14. Kerri Witbeck

    You are doing all the right things. I would fight as long and hard as possible to keep my baby here with me. It’s what GREAT parents do. Don’t ever EVER doubt that. Ronan, and your twins, are BLESSED you were chosen for their mother.

    Ronan – you hold a very special place in my heart. Your courage, fight, drive, strength, and will I only hope I can teach my children. Your parents are awesome parents for instilling these qualities so early in you. Keep fighting.

    Many prayers,

  15. Laura

    I was one of Woody’s classmates in grade school and high school. I just wanted you to know how much I care about Ronan even though I have never met him or you. It is so brave of you to share all of this with the world. I think of Ronan all time and pray often for him. I pray for him when I get up in the morning, when I do gardening with my kids, when I tuck my kids in at bed we say a prayer together for him. I had a dream about Ronan early this morning that he was peaceful and happy and running on the beach with a full head of hair. I hope that will be true someday.
    May you find comfort in your family’s love during this difficult time. I will continue my thoughts and prayers for your family.

  16. Nance Harris

    Wise words Connie Phelan, well said. Maya and Woody so many of us are praying for each member of your family. There is a God who loves each of us enough to give up His only Son for us. But, this world is under Satan and bad, horrible things happen; God, the comforter, can help us through them and we know in the end God rules and wins.

  17. Stacey

    Yeah for poop and laughter!! 🙂

    Thinking of you daily. Hourly. Sending love, hugs and the happiest of thoughts. Go Ro!!!

    XO
    Stacey

  18. angie

    i love reading your blog the first thing i do in the morning when i get up to see how sweet Ronan is doing! im so amazed by you, what a kick ass momma Ronan and the twins have been blessed with,your such a wonderful mother and wife (as i can tell from your blogs) you are! your strength and fight is what i love! your honesty to tell it like it is! FUCK YOU CANCER!
    Your drive, never willing to give up on the fight, and finding the strength to push forward everyday, no matter how tired, hungry, whatever it maybe your first priority is your children! i feel honored to read Ronans journey with you thru this all! Sounds like Ronan is fighting like no tomorrow and to hear that he laughed and POOED is amazing, just those little things we hold dear to our hearts forever!
    You along with Ronan are true fighters, hang on to every hr min and sec you have, for thats one little boy whos touched the lives of many, God Bless your family!
    Ronan dear sweet boy- the world loves you to the moon and back!

  19. Christen

    Hello. I don’t know your family in person, but I am a friend of a friend. She shared your blog on Facebook and I have been following you faithfully. I too am a mother but I cannot begin to understand what you and your family are experiencing. However, I get a tiny glimpse into your world from the heartfelt words that you write. I have been praying for you and pulling for you every day. You are such a wonerful example of a mother. You may very well be the strongest person I have encountered. And Ronan…..how strong and special he is! I know you don’t need to hear this from a stranger, but I’m so happy when you write about the passion you have to never give up on your precious little one. A mother, above everyone else, is the one person that a child knows he can always count on. If we give up, then certainly there is no hope. But when you fight as hard as you do, there is always hope! Anyway, you don’t need to hear that from me because I know you already feel that way. I just wanted to let you know that I am channeling all of the strength I can your way. I do believe in miracles and I do believe that Ronan can experience one. I will pray with you for that miracle every day! I will also pray that your heart stays strong and any negative words that you may hear…intended or not….don’t take away from that strength. Fight on! You have an army behind you and Ronan!

    Christen

  20. Julie

    Ronan is amazing…your family is inspiring. Here’s to hope, prayer and lots of love from Canada!

  21. Jon

    I have been following your heart breaking story for a couple weeks thanks to a friend posting it on their FB page. Today’s blog is a much needed UPPER since the last one. My wife is a childhood cancer survivor. To read your story of how much you love your son and spent every moment possible with him is inspirational. My wife tells me stories of lonely nights, when no family came to see her. She would be in such pain, but afraid to take any pain relievers because she thought it was “taking drugs.” There was no parent there to reassure her, and let her feel comfort.

    She made it through, and sharing your story with her, we both agreed that you are a tremendously loving and strong person. My wife also said that the best thing to do is keep a strong and happy face with Ronan at all times. Not being fake, but not wearing your pain and heartache on your sleeve around him. Let him know there are people all around the world praying for him, and for you. He is becoming an internet superstar and a symbol of strength and courage for many.

    Thank you for sharing and being so real. I am wishing and praying for the happiest times for your family.

  22. Elle

    I have seen this listed in several places online today and thought of Ronan…Happy Star Wars Day…May the Fourth be with you!

    As Ronan is a big Star Wars fan and he had a good day, I hope today is even better for him and the start of him feeling much better and healing happening without us even knowing it yet.

    Thank you for sharing Ronan with all of us! Sending many hugs and healing prayers to all of you!!

  23. FL Mommy

    So glad the little guy (and mommy) had a good day!! Still sending non-stop prayers for healing your way. Much love to your entire family.

  24. Marquita Ward

    I remember reading the story you mentioned..what a great read for us all! REALLY love hearing that Ronan is able to show us all some hope.
    Continue Lord to bring these times of refreshing..show us all the love you have for us.
    Prayers and love sent your way Maya, for sure, strength and peace.

  25. Denise Kivela

    Praise The Lord!!He is working right now and its in you Maya the Warrior!Your not giving up,yes you had a blip in the road but your back and all ya needed was a poop and a giggle and you got you fighting pants back on!So glad to hear your fighting spirit is back!!Now that is The Lord working!!!Keep it up girl!!!

  26. Jenny Horn

    While I do not know your family, a friend of mine shared your story and I pray for you many times every day. I have been praying for peace for you, Maya, and am so glad you have found some small semblance of it today. I happy for you that you have so many family members and friends that love you and your boys with all their hearts. Know that there are also many strangers out there who love you all too and keep your family in their hearts as well.

    Thank you for being so real. The raw emotions you share, without any sugar coating, help us all to better understand and to be better people. While I know that is the least of your intentions right now, you are touching the lives of others and your precious Ronan is an inspiration. As I sat in the hospital last night with my son, who just turned four and was receiving a breathing treatment, I kept thinking of you and Ronan and how the magnitude of what you are going through was SOOO much greater than what we were enduring. As much as my heart was breaking for my sweet son, I could not even fathom how much yours must be hurting, and, at the same time, LOVING. I pray that the love shines through every moment… and that you have so many, many more precious moments with your precious boy. I love the quote that was shared from “The Shaft” author. I definitely don’t believe that God makes us suffer with intention… but He is there to help us through the suffering that this sometimes cruel world brings our way. May you find comfort leaning on Him and on those around you during these trying times. Hopefully a true miracle with take place and you will be past this soon. I look forward to reading your post when Ronan celebrates his fourth birthday very soon!! 🙂
    God bless you and your family.

  27. April Schubert-White

    Maya-

    Thank you, thank you, thank you for sharing this today!! I feel overjoyed to know you had a chance to hear him laugh again. Hope you all had the best poo poo party EVER! Please give him an extra squeeze for me. I don’t know you or him, but I love both of you as if I’ve always known you. I believe in miracles! Its gonna happen!

    April

  28. Angela

    Hi I do not know you, but every day me and my husband pray for you and your baby boy that he recovers and is cured by the grace oh God so He can be wit you for a very long time. Sending prayers from new Mexico!

  29. Mom of Three

    A miracle is an event attributed to divine intervention. Sometimes an event is also attributed (in part) to a miracle worker, saint, or religious leader. A miracle is sometimes thought of as a perceptible interruption of the laws of nature. Others suggest that God may work with the laws of nature to perform what people perceive as miracles. Theologians say that, with divine providence, God regularly works through created nature yet is free to work without, above, or against it as well.

    GOD regularly works through created nature yet is free to work WITHOUT, ABOVE OR AGAINST IT AS WELL. I believe miracles can and do happen. Please know that not one Dr., not one Nurse, not one single person you can think of on this earth can determine the fate of your little Ronan nor tell you how long he has to live. God is the sole decision maker. I believe He works with us during times like these, that is why you and your family need to continue to fight, continue to believe, TRULY believe that things will be ok, because there is always hope that things WILL be ok. You all sound amazingly strong. Stay strong, kick cancer’s bum kiddo, show it that it’s not allowed to stay because you know that a miracle is about to happen!

    Tell that little Rockstar of yours that he needs to keep fighting because it is our will to live that best fights disease and pain!!

    Hang in there, saying many prayers for you and your family!

  30. Glenda

    Poop… Giggles… playing with his Star Wars…. hiphiphooray!!!!! OMG…I’m so happy for Rockstar Ro!

    Praying…praying for miracles…miracles… please God.
    This amazing lil man with the most beautiful blue eyes needs to be here with his amazing beautiful family.

    I’m hoping and praying that San Diego is the place.
    I pray that Ro’s pain diminishes.

    I believe and hope… So glad to hear that you had a peaceful day. You so deserve it mama bear!

    Luke is the music to Ro’s ear… I’m beyond happy… tears of joy.

    You captured my heart. Every morning I wake up and the first thing I do is come to this blog. Every night I lay myself to sleep and pray for Ro… for you and your hubby, for the twins… and your extended families.

    Stay strong and positive… believe…and Rock on Rockstar Ro!!!! XO

  31. Marcy Shipman

    I’ve been wanting to post something for last few days, but just couldn’t come up with what to say. I still have no words. I’m not even Ronan’s mom, nor have I ever met Ronan, but I’m am completely heartbroken. I’ve been screaming out to God asking him the “Why?” question and so far I have no answer. I just don’t understand why any single child should have to suffer this immensely…..let alone the parents and loved ones of these children!! I’ve been following other childrens’
    stories that have neuroblastoma, many who have sadly passed on, but I feel such a strong connection to Ronan’s story….maybe because I’ve followed your story since the very beginning. It never dawned on me for a second that he wouldn’t get better…..I still believe a miracle can happen, though!! I will NEVER stop believing and praying for that until the bitter end!!!! Please know that you truly are an amazing super mom!!!! Your strength truly amazes me (although I know you may not feel like you have it now)! Ronan is the most blessed child to have you, Woody, and the twins in his life! He’s known so much love throughout his entire life…..and will hopefully continue feel the love in his life for months/years to come!! I’m truly sorry for the pain Ronan and you are having to endure right now. I will continue to shout out to God and pray for that miracle!!! If there anything those of us can do for you from afar, please post that…..whether it’s ordering meals for you, sending toys or whatever for the boys, anything. I really want to support you through this hard time….as I’m sure many of us do out here, so if there is anything we can send or do, please let us know. My hopes and prayers are truly with you and Ronan right now and will continue to always be, and if that’s all I can do right now, then that is what I will do. God bless each of you!

  32. Michelle H.

    Hi Maya~ I just wanted to let you know that it was a dear friend of mine that left a message with your nurse today. Just ‘saying cause otherwise might appear even more random that it actually is ;). Your post made my morning…so beyond happy that you got a giggle (and a poop!) out of little Ronan. Praying for a good day for you all today…xoxo

  33. Marcy Shipman

    P.S. I’m going to be traveling to Phoenix and then San Diego next week for work. Now hearing that you may be going to San Diego around the same time for a miraculous treatment makes me wonder if this is just a sign that that a miracle is going to come your way. I know I’m just one person amongst the thousands of us out hear praying for Ronan…..but I’m going to roll with that being a sign of some big turnaround coming your way!! HOPE!!!!!!!!!!!!!!!!!!

  34. marci kaplan

    I just wanted to say that my thoughts and prayers are with all of you xoxo The last post was amazing

  35. Maria

    You do not know me, but I read a facebook post the otherday and it was one of your blog entries. I was overcome with such emotion. I have been reading everyday. I can literally feel your words…they are so powerful…..your courage and strength is inspiring. I admire the fight you are putting up for that beautiful boy. I want you to know that there are a lot of people fighting and praying with you, even though you do not know us. We will continue to support you from afar. You are what every mother should be for there child. I know you will go to the ends of earth for him, and he deserves you as his mommy, nobody could do a better job. We are all praying for that miracle that Ronan deserves. Such a strong beautiful boy. Keep up the fight mommy, your doing great!!!! Love and prayers your way always xoxoxox

  36. D.L.

    I do not know your family but have been following your blog after hearing about Ronan on another site. This is my first post but I felt compelled to
    write after the wonderful update from last night. I am a firm believer that it is by no accident that we get the children we get. I truly believe our children choose their parents. Ronan chose you and he is far from ready to leave you. Bless him and bless your entire family! You all will be in my prayers daily.

  37. Dawn

    You keep fighting…we are all fighting too. When you feel you have no strength, please know there are so many mommys out there that are giving you some of theres. We have so much to give you! You are support from so many people, people you know and people you have never met before. You are amazing!!!!
    Your family is in my thoughts daily!!!!
    I am sorry people post such dumb comments…I dont know what they are thinking. You are Ronans Rock, you have what it takes to fight. Take little breaks like you keep doing so you can be strong for Ronan. He loves you so so much.
    Please know you can reach out and someone will be there to help……..there are so many people supporting you and will be there forever!!!!!!!

  38. Nadine

    May the 4th be with you Ronan!!! When I saw this on my fb page I knew it was for you. Wishing for a happy Star Wars day for you;)

  39. Arayah

    Such happy news this morning! I pray for you and Ronan every night and morning. I wish there was more I could do…..I will continue to pray, pray, pray!

  40. Monica

    Maya – I check my e-mail before I even get out of bed to see how Ronan, and you all, are doing. As always, remember how many people are on your side, and will do anything in their power to help.

    I am a high school English teacher and had my students write about the quote: “brilliance can take many forms.” While reading their unique responses, I couldn’t help but think of you and Ronan. The bond between a child and a mother is more brillant than anything. Frankily, no one can understand it but he and you. Cancer can’t break that bond. It is far too brillant for that. With love, Monica

  41. Maureen

    yay for poop! i hope you enjoy your star wars quilt and have the BEST day Ronan!

    my thoughts and prayers continue.

    maureen

  42. Jennifer

    You don’t know me, but we have lots of friends in common who talk about you and your family often and with such love and admiration. After reading some of your blog, I can see what they are all talking about. You are truly an inspiration and are incredibly strong. I wil pray for Ronan and your whole family to get that miracle you all deserve.

  43. Theresa Dietel

    I read your blog everyday and find myself so moved by the strength that you have. I am a mom as well, although my daughters are older, and my heart is full of the pain you must be feeling, but through it all you find the time to write to people you don’t even know and share your most private moments so that the story of your beautiful son will be out there. What an amazing thing. I cannot even imagine anyone who would have any ill feelings towards you for any of the things you have said or any of the feelings you have had. I pray for you, your family, and your darling little man with eyes that show his light. I am forever hopeful and believe entirely in miracles.

  44. Renae C.

    It’s amazing how alittle laughter and smiles can bring such happiness. We continue to pray for miracles,xoxo and besito’s!

  45. Tickle

    Maya I just want to take a moment to say thank you for being so real and honest and putting it all out there. I lost my son several years ago and people kept saying, what I felt at least, were the most ri-goddamn-diculous things ever! It takes courage to tell people to zip it sometimes, and no one on earth truly knows what anyone else feels. Rose Kennedy once said, “it has been said time heals all wounds; I do not agree. the wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue, and the pain lessens, but it is never gone.” I keep you and your beautiful family in my heart and my prayers.

  46. Dana

    I am in love with you Maya! Your strength, your positive energy, your kick ass attitude, your LOVE!! It is beyond words. And of course, it goes w/o saying, I am in LOVE with Ronan!! He is beyond words to the moon & back!
    I just had to write because yesterday as I was getting in my car the car next to us had a sticker on the window that read, ROCKSTAR. Then as I was driving home I passed a convenience store and there was a sign for ROCKSTAR energy drink. Then a few blocks down the road a little boy was walking with his father and his shirt said ROCKSTAR! Three ROCKSTARS in a row on my 10 minute drive home….WOW…I was sure this was a sign that Ronan was rocking out! So thrilled to read that he was laughing & pooping yesterday….woo hooo!!!

    I know you are trying every doctor possible right now and I was wondering if you’ve tried the National Institutes of Health (NIH)? They do all clinical trials & testing for rare diseases as well as cancer and they have access to every study & materials that other doctors don’t have access to. My son was just seen there for two genetic disorders. I know they do a lot of cancer research, here is the link:http://www.cancer.gov/cancertopics/pdq/treatment/neuroblastoma/HealthProfessional

    One last thing, I think a minute of pure love should be devoted to Ronan. Pick a time, post it on your blog & FB and have everyone focus all their love, prayers, energy, everything in their heart & soul to Ronan. A minute of pure love for Ronan. Light & love for your boy.

    STAY STRONG & STAY POSITIVE &
    KEEP KICKING ASS!!

  47. rosemary

    maya- i added you onto facebook the other day because well i went to school with your husband. but thats besides the point. i dont remember him but oh well. thats not the point, anyhow… i am responding to this blog because i find you inspirational.
    i am very glad that ronan is seeming to be getting better. and i am also very glad that you’re at the Ryan House. i was reading about it the other day. the pics of the place is very dope.
    because of you, i’ve been watching my son lately. i fear stuff like cancer with him. he’s gonna be 19 months in a few days. i dont have the best health and i want it with my children.

    now i’ve read on your son’s facebook that peeps have been posting about certain docs you should check out. one person referred you to the doc that they work for. another person made a comment about that doc saying ‘ very good’. because you’re trying everyone out, i was just making you that you were aware or sorta aware of what was posted because ya never know this person might be a miracle worker.

    also…. i have tons of friends on facebook who’s giving shout-outs and telling others to pray for ronan.
    on top of that, one of them planted a tree in his honor.
    and another one is trying to get a hold of the pope’s office to see if ronan can be pope john paul’s way to become sainted. and she’s hoping that ronan is his miracle.
    recently i’ve been losing sleep cuz i’ve been waiting for your posts to see whats going on with you and your kids. i’m very concerned and i am very glad that you’re a wonderful ‘mama bear’ to your kids.

    one of your blogs you posted that you didnt understand why he has it and you said ‘ no one says this to me’. you said you didnt understand why. i agree. because i know so many peeps who dont deserve kids. and they have healthy children. they’re unlike you and they dont have a stable home, they arent normal in the head. and they abuse the kids in different ways, shapes and forms and yet there kids arent unhealthy, so that right there pisses me off.

    so i’m emailing you to tell you how much you’ve inspired myself and many others esp my friends on facebook.
    and look at all the lives you’ve touched esp with everything thats been going on with you. they wouldnt be around if it wasnt for you. they’d be for ronan but they’re also there for you. when you are feeling a little low, think of that.

    i just wanted to type ya that.

  48. rosemary

    @ tickle- i agree with you. i saw what the loss of my bro did to my mom.
    my mom lost her only son when he was only 18 months old in 1975. my son right now is that age so i get worried quite often because of my bro.
    my bro came into my mom’s life before i was even thought of. he died because he was born with a bad heart. she was informed to abort. due to many reasons, she refused. there was no heart transplants back in the day for children. the day he passed away, my parents argued because he wasnt behaving correctly. he had a seizure and my mom was dashing to my dad’s car to bring him into the hospital. she informed the hospital that they were coming. my bro looked up at my mom and smiled and passed away in her arms at home by the front door. since he passed away, she didnt want other kids. but because my older sis was lonely, thats how myself and my 2 other sisters came about.
    since his death, you cant talk to her on the day he passed away. she’ll kill you. just let her cry. let her be by herself. if thats what she wants, give her that. it may honestly not help but she thinks it does. being around her helps and she knew it.

    rose kennedy is wrong. my mom could of told her that its not true. you suffer forever with the many pains, agony and insecurities and disbelief and wonderment.
    i always think of my bro and say ‘ what would life be like right now if he was around. ya cant help but think that.

    maya- i have told peeps on facebook that ronan is gonna outlive you and your husband and he’s gonna pass when he’s a zillion years old.

  49. Jennifer Holling

    Maya,
    You may not remember me, but we knew each other long ago, in a galaxy far, far away. I was friends with Amber in High School, and often times our plans including hanging out with her cool cousin, Maya. I was the short redhead, covered in freckles :).

    I had seen on Amber’s FB page earlier that Ronan was ill, but I had no idea it had gotten this far. I assumed that all would be well and good in the world and that he’d be miraculously cured on the East Coast. I’ve just stumbled onto this blog today and have spent a good part of the afternoon crying and cursing with you. I feel the need to respond now.

    YOU damama. And if YOU think it’s time to keep fighting, then please please please keep fighting. YOU know your child best. Do not let doctors, naysayers, or insensitive people slow you down. You fight for your boy and your family in the same amazing way that you’ve been doing so far. I (and the rest of the people around the world who are following this blog) will continue to send you luck, prayers, spare karma, hope, whatever we have. It’s all yours to pour into healing your boy. Keep up the fight in memory of those who went before you (whether they won or lost) and blaze the trail for those who come after you (at least until we can find the cure for this blasted, evil, wasteful, cruel disease.). My family and I will keep your family in our thoughts and prayers. And I will go home tonight and hug my child harder for the rest of eternity because of your words.
    -Jennifer Holling (and the rest of the Holling family)

  50. Dana Solberg

    Great great post! Poop and laughter have lifted my spirits this evening. Still praying for the miracle.

  51. Annie Johnson

    I don’t know you, or your family at all, but this is what I want to say to you……. YOU KEEP FIGHTING!!!!! I’ve heard about “Rockstar Ronan” because his face is plastered all over my tanning salon, (It is such a beautiful little face by the way.) and I see this happy baby who has a horrible disease, but I never knew the extent of it. I was working one night at the local hospital and one of my nurses told me the news that he did not have much longer. I was devastated, immediately I went on line (I’m not sure why) and I found this slide show that shows possibly the most handsome little boy I’ve ever laid eyes on and pictures of what this disease is doing to him. I’ve been crying almost non stop for a week now, and it wasn’t until today that I was able to read your posts. YOU ARE DOING THE RIGHT THING!!!!!!! Never giving up on your child is the best thing for him and he can see how much he means to you. I believe he was meant to do great things!!!!!!! I still believe that even with the worst prognosis, he is gonna pull through and find the cure to this thing as a grown up. I’ve been praying and praying and praying and praying for him and your family. He’s pooping and he’s laughing 🙂 YAY for him!!!!! He is such a beautiful little boy and please just refusing to take no for an answer, NO is never an answer, somebody somewhere knows what to do, so YOU KEEP FIGHTING!!!!! and LOVING your precious precious little boy, and I’ll keep PRAYING and PRAYING and PRAYING!!!!!

  52. Leigh Donahue

    Maya,
    You and your precious Ronan stay on my mind frequently. I read your posts, look at his sweet pictures and just cry for what you all are going through. I have a two year old little boy who is my life and he and I have turned our nighttime prayers into basically the Ronan prayer. Since reading about Ronan, I hug my sweet Conner more, kiss him more and try to never take one second that I have with him for granted. You are such a great mother and you keep on fighting. You have 2 people in Alabama praying very hard.

    My daytime ritual has become checking on Ronan before I get out of bed, on my lunch hour, after work and at bedtime. You are so sweet to allow us to follow his story and to love him like we know him. Thank you!

    Leigh

  53. Patricia

    I’m so happy you had a better day!;) me and my girls pray for Ronan all the time! We send a Easter card but you were not in ny anymore so it came back! Next time you come to ny your hair color is on me! Xoxo all the best.

  54. Alexandria Misthos

    This is a poem written by Sarah Kay called “Point B”…I hope you enjoy it! It definitely reminds me of you.

    “Instead of mom, he’s going to call me “Point B” because that way he knows that no matter what happens, at least he can always find his way to me. And I’m going to paint the solar system on the back of his hands, so that he has to learn the entire universe before he can say “Oh, I know that like the back of my hand.” He’s going to learn that this life will hit you, hard, in the face, wait for you to get back up so it can kick you in the stomach, but getting the wind knocked out of you is the only way to remind your lungs how much they like the taste of air. There is hurt, here, that cannot be fixed by band-aids or poetry, so the first time he realizes that Superman isn’t coming, I’ll make sure he knows he doesn’t have to wear the cape all by himself. Because no matter how wide you stretch your fingers, your hands will always be too small to catch all the pain you want to heal, believe me, I’ve tried. And “Baby,” I’ll tell him “don’t keep your nose up in the air like that, I know that trick, you’re just smelling for smoke so you can follow the trail back to a burning house so you can find the girl who lost everything in the fire to see if you can save her or else find the girl who lit the fire in the first place to see if you can change her.” But I know that he will anyway, so instead I’ll always keep an extra supply of chocolate and rain boots nearby, because there is no heartbreak that chocolate can’t fix. Okay, there’s a few heartbreaks chocolate can’t fix, but that’s what the rain boots are for because rain will wash away everything if you let it. I want him to see the world through the underside of a glass bottom boat, to look through a magnifying glass at the galaxies that exist on the pin point of a human mind. Because that’s how my mom taught me, that they’ll be days like this, “They’ll be days like this my momma said.” When you open your hands to catch and end up with only blisters & bruises, when you step out of the phone booth & try to fly, and the very people you want to save are the ones standing on your cape, when your boots will fill with rain and you’ll be up to your knees in disappointment, those are the very days you have all the more reason to say “thank you,” because there is nothing more beautiful than the way the ocean refuses to stop kissing the shoreline no matter how many times it’s sent away. You will put the “wind” in win some lose some, you will put the “star” in starting over and over. No matter how many land mines erupt in a minute, be sure your mind lands on the beauty of this funny place called life. And yes, on a scale of one to over-trusting i am pretty fucking naive, but I want him to know that this world is made out of sugar. It can crumble so easily but don’t be afraid to stick your tongue out and taste it. “Baby,” I’ll tell him “remember your mama is a worrier, but your papa is a warrior, and you are the boy with small hands and big eyes who never stops asking for more.” Remember that good things come in threes and so do bad things, and always apologize when you’ve done something wrong, but don’t ever apologize for the way your eyes refuse to stop shining. Your voice is small but don’t ever stop singing and when they finally hand you heartbreak, slip hatred and war under your doorstep and hand you hand-outs on street corners of cynicism & defeat, you tell them that they really ought to meet your mother.”

  55. Tessie

    Sending love, strength, and prayers out to your entire family! Maya…you are an amazing Mom…your boys are very lucky to have you in their lives!!!

  56. Paty

    If you decide to come to San Diego and need something (anything), please feel free to call us. We are close friends of Olivia.
    Paty and Joel Q

  57. Shannon Hubbel

    I am so happy to hear that Ronan pooped! Ronan, I think about you a lot and your sweet face and your amazing way through this. Your mom and dad are amazing parents and would go to any length to take care of you, and that is what amazing parents do. Keep showing your strength and your love, because it is definitly shining through!

    From one NB family to another.
    Love Shannon, Emily’s Mommy
    http://www.caringbridge.org/visit/emilys
    http://www.emilyhubbel.com/
    http://www.facebook.com/emilysjourney

  58. Lisa

    Maya~ I am so amazed of your truth in your blogs, I can feel every ache in your soul with your writing. I can’t even begin to tell u what is on my mind after reading this. Well, to make a long story short, my third son was born with a brain tumor that took him away from me after 45 days. Life is definetly not fair you are an absolute rockinrockstar mom and I wish you and your family comfort and lots more smiles! I wish you luck in anything y ou can find to help your sweet lil man.

  59. Candi

    Wow, how wonderful is that!!!
    I am sure your heart melted hearing Ronan giggle! Children’s smiles and giggles are amazing are’t they!
    I am so glad you were all given such a wonderful gift today!
    As far as pooping I am sure Ronan feels better after that too! heehee!
    Sleep well and start anew tomorrow with an even better day…One day at a time until Ro is healthy again!
    Blessings,
    Candi

  60. Tina

    Hi Maya! First of all, you are an amazing mom!! I see how many people love little Ronan, its so wonderful. My daughter, who is 9 wants to know what your funniest story of Ronan is. She wants to know him better and wants you to share a story about him that made you laugh really hard. Weird request maybe but she thinks he is adorable and wants to know more about him.
    She also says that she loves the pictures and said “he is always smiling, thats cool”! Love and support coming from Lakeside AZ.

  61. Elizabeth Z

    Ronan, I just wanted to let you know that I am thinking about you and I am praying. I dedicated my run to you today, and even though I wanted to stop so many times you kept me going. xoxo

  62. Wm Carter Elliott

    You have EVERY RIGHT to GET MAD!!! GOD didn’t give Ronan CHEMO, the FDA/MayoClinic/BigPharma DID!

    THEY SUPPRESSED the TRUTH about Megadose IV Vitamin C back in the ’70s.

    Linus Pauling, twice-Nobel Prize winner, 1st published his research supporting the fact that Megadose Vitamin C KILLS ALL CANCERS, making the point VERY CLEARLY that it took a LOT of Vitamin C to kill cancer cell lines: >14,000uM/liter, an amount ONLY POSSIBLE by IntraVenous administration.

    It was ALREADY WELL KNOWN that the Maximum amount of Vitamin C one can absorb from oral Vitamin C is 220uM/liter, and F*CKING MAYO CLINIC ran a “study” to “verify” Pauling’s results using ORAL VITAMIN C ONLY.

    It was DESIGNED TO FAIL.

    Pauling was an AntiWar Activist and NIXON was in-office.

    NIXON had PAULING “SLIMED”, and the FDA went out of their way to call Pauling a “kook” and a “crackpot”, and slimed his Cancer Cure along with him.

    I have Metastatic Melanoma, myself, and if I had gone the CHEMO route, I’d be dead by now. Instead, I found a local clinic that administers MEGADOSE Vitamin C IVs, and within days after the first treatment, the Melanomas started DYING and FALLING OFF!

    DAYS, NOT MONTHS; DYING and FALLING OFF, NOT *SHRINKING*!

    I’ve posted links to the science behind all this to you on Twitter MANY, MANY times, but I can see now why you haven’t seen any of it, having to wade through all the well-meant compassionate BULLSHIT, burying the actual CURE for Ronan in the pages of prayers, etc., intended to make you “feel better” about your son being VICTIMIZED BY BOTH THE DISEASE AND THE TREATMENTS.

    If you want to see FAST, PAINLESS RESULTS in DAYS, then CALL THE CLINIC in Scottsville at 480-214-3922.

    They may even be able to tell you where you can get IV Vitamin C in Phoenix.

    It SHOULD be easier to find out who provides this service, but we can thank the BUREAUCRATS at the FDA for threatening to CLOSE DOWN any clinic that offers this treatment, which, being SUCCESSFUL, poses the threat of THEIR EMBARRASSMENT if your son should LIVE!

    You have EVERY RIGHT to be MAD AS HELL! I AM!

    I was Director of BioMedical Research & Development at three companies, and my experiences there can be summed-up in one sentence: CURES aren’t profitable; TREATMENTS are where the BIG BUCKS are!

    Here’s the REAL SCIENCE (not the bullshit the doctors told you):

    Re-Assessment Urged for Intravenous Vitamin C and Cancer: http://www.medpagetoday.com/HematologyOncology/OtherCancers/2938

    Vitamin C Mega Dosing – Big Pharma suppresses an inexpensive powerful cure: http://www.naturalnews.com/030599_vitamin_C_mega_dose.html

    Sodium ascorbate decreased the expression of CD71 and caused NeuroBlastoma cell death within 24 hrs. http://www.molecular-cancer.com/content/6/1/55

  63. Kim

    I have read your blog for the past week and feel as though I’m sitting in the room with you. As I have said before, I have a son battling neuroblastoma and can relate with the sickness. However, I cannot relate to what you’re going through at this moment. God chose you to have a child with cancer for He knows the strong. I believe in miracles as my son is going through a miracle. We were told in the beginning he would have surgery, 6-8 rounds of chemo, radiation and that was just a start. By the grace of God, he hasn’t had to have chemo yet. Does that mean he won’t? No. It just means we have to sit with knots in our stomach waiting every month as to results of MIBG’s, CTs, bone marrow aspirates, and blood work. I’m a basket case all the time. I’m not sure if you’re in contact with Dr. Maris from Children’s Hospital of Philadelphia or not. He is the head physician in charge of research at CHOP. HE”S AMAZING!!!!! If you want his contact information, I can give it to you. I live in Florida and he has helped us numerous times. Anyway, I’m like you, I will take my son to CHOP, San Diego, to the ends of the Earth if I have to in order to get him help. See, my son was 10 weeks old when we were told he had cancer. He is now 6 1/2 months old. I cherish everyday with him. When people tell me how sorry they are, I reply back, “don’t say you’re sorry, just pray.” This little boy brings you pure joy and believe in that miracle. Faith. Love. Hope………..love and prayers, florida

  64. Heidi

    Today is the first day we haven’t seen Ro since you’ve been home from philly. One day is too many to not hug him, hold him, make him laugh or stare into those amazing blue eyes and it’s killing us all, especially LUKE. Last night when Luke got home from being with Ro at the Ryan House he said to me “mom will you sleep with me?” I wanted to lay down in the kitchen (where I was, cleaning dishes) and throw a blanket on top of us….you see Maya he never has asked me to sleep with him, but because of you and the love he feels when he is with you and Ro that makes him yearn for more. Thank you for that, dad slept on the coach and I got Luke all to myself. He has asked me a thousand times today “mom how’s Ro?” Luke can’t wait to cuddle next to Ro and I look forward to seeing your glossy lips and forever green eyes! xoxo “Luke’s mom”

  65. Elizabeth

    I have been following you story for several weeks now thanks to a Facebook friend. I have now shared your story with many others as I believe your words need to be read by all. You are a wonderful mommy with so much love in your heart for all of your babies. You have truly inspired me in my never ending quest to become a better mother. Thank you for making me see that sometimes the fiercely protective mama bear instinct is the only instinct we should listen to. Hold your little love tight and continue to fight for him! I am praying and thinking of you all constantly!

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