Thank you.

Thank you to everyone who has responded to the New York Times piece.  The tweets, shares, comments on the blog and on Facebook, the telling of your own stories – thank you.  I am doing my best to send your love and warm wishes Ronan’s way.

39 responses to “Thank you.

  1. HI Emily–
    I absolutely fell in love with your blog and your little family. Ronan is the sweetest little boy.
    I was diagnosed with CF when I was 11–no family history. So when I read your blog, I see a lot of my family in it.
    Sending prayers your way…
    Another Emily. 🙂

  2. You are welcome! I, too, have fallen in love with your precious Ronan as have countless others.

  3. Emily, thank you for your beautifully written article and sharing your precious Ronan with us. I am keeping you in my thoughts and prayers. You really have put things in perspective for us moms and humans on so many levels….I am going to keep this with me. I just bought your book on amazon and look forward to reading it. I hope others will go in droves to buy it too! Sending hugs to a courageous mom & love to your sweet son. -Caragh

  4. Your piece really touched my heart on so many levels. Thank you for your courage, love, wisdom, and deep humanity -you give me hope for the human race. Blessings and prayers to you and your family and especially sweet Ronan.

  5. The article is beautiful. Sad and poignant, inspiring and thought-provoking; a treatise on what parental love is and should be. Sending you and Rick and Ronan much love, Emily.

  6. Thank you for sharing your story on the NY Times. Ronan’s story and your care of him resonated with me. Blessings to you and your family.

  7. Thank you for sharing your life with strangers and giving us a glimpse into your world. I’ve read your blog from beginning to end this evening, shed many tears and placed thankful yet guilty hands on my own sleeping toddler, reminding myself to be present in all moments with her. I am mildly comforted that Ronan knows your love and you know his, and I pray for time to slow for you so you can treasure every precious moment with your son. Much love, prayer, and hope for comfort, peace and strength for you for the future.

  8. Wow, Emily, You nailed it.

    Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

    My daughter, Maite, was born six months ago. She has down syndrome. I can identify with you, on the “future” banter. It’s a whole new way of looking at life!

    Anyhow, had to write, wish I could give you a big ol hug. Please hug that angel of yours for me.

    -megan warren

  9. I don’t know you personally… But I shared your piece with others – and really have no words to explain how I felt when I finished reading it. I am grateful to you for sharing your story – and reminding all of us to be grateful for each moment, for each hug and for each moment. All of my prayers for peace for you and your family.

  10. Hi, Emily —
    I met you briefly at an Antioch MFA info session a couple years back. Bought and read your wonderful memoir back then, and recognized your name in the NYT this past weekend. What a beautiful and heartbreaking essay — and experience. I’m glad you have a community of support around you, and that you can be a voice for others going through parallel journeys. I send you strength and courage.

  11. Emily,
    I am humbled by your grace and love. As the parent of two 4-year old boys, I cannot imagine your pain. My heart and prayers go out to you and your family. Now is truly all there is. Thank you for your story.

  12. Rachelle Reis-Larson

    Dear Emily,

    Thank you for sharing your story and your sweet, beautiful Ronan, I am forever changed for reading it. Sending you, your husband and your little guy love, lots of love.


  13. Wow. I don’t have children yet but I think many times a day of when I do. It terrifies me for everything that could go wrong. You just changed my whole Outlook . I can and will love my child no matter what could ever happen and lay down my life for whatever . You’re amazing. I’ve never read a blog or.commented before but I saw your story on Facebook and googled you. I lost my mom very early in life and missed out but he is so lucky to have you. Your amazing . Good luck

  14. Dear Emily-
    Thank you so much for sharing this. You are such amazing parents and your son is so beautiful! The picture of you two is what true love must look like

  15. Emily, I came across your post in the NY TImes and I must say, you have the courage and wisdom of a great soul. I salute you for all that and more. I also believe implicitly in the power of prayer and will send up prayers everyday for a cure to this disease. I have shared your story with friends via Facebook and we all join together to wish you and your family a heartfelt prayer for Ronan’s recovery. May the gods smile on you and your goodness. God bless.


  16. It’s incredibly unfair. My heart is breaking and keeps on breaking with every word. I am not religious but I had to pray last night just to try to make sense of this. I still cannot understand why and now I am just angry and hurting for you. For what it is worth, I will continue to pray for your family every night. Keep your precious Ronan close.

  17. Judith A. Rankin

    Dear Emily,
    Not yet, not yet but as life heals and guides you, you will be in awe of the rare and poignant love that Ronan has brought you. Iit will be part of the quilt that you will stitch with the fabric of powerful love, resilience, perseverance, humor. You will never be alone. Life will always be partnered with Ronan.

    Staggering how brave we can become. The best in us breaks forth.


  18. Dear Emily:

    I was forwarded your article Rapp, “Notes from a Dragon Mom,” (Oct. 15, 2011) from a friend of mine. Both of us are parents so of course, we read anything we can on parents, parenting and the world of children.

    Your message connected to me on so many levels. I just wanted to tell you that your son, Ronan has touched me (touched really isn’t the word, held my soul, perhaps) more than a person who lives to be 100. I am from the other side of this conundrum. I am a motherless daughter. My mother died when I was 4, she was 25. No reason why. Natural Causes is listed as the cause of death.

    I have spent most of my 40 plus years after her death trying to figure out haunting questions; me, her, why.

    I can’t say I know what your life is like or will be like; all I can share with you is that you have touched a place in my soul that not many people reach. Thank you. In the end, all we can hope for in our lives is to be touched; to be remembered and to share that importance. Ronan and you have done that for me.

    Please kiss your little Buddha for me; he has helped me grow into a better being.

    Warm regards,


  19. Thank you for sharing your beautiful little man with the world. Every baby has their challenges and I marvel at your courage and strength as you face yours.
    I am not very religious, but always remember the words of a friend of mine that “God doesn’t give you challenges you can’t meet”. Someone knew how strong you are and left Ronan in amazing hands.
    Give him a smooch from Ohio and thank you again.

  20. Hello Emily,
    Splendid, superb, insightful and real — thank you!
    You write;
    “impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal.” …. “Nobody asks dragon parents for advice; we’re too scary.” My experience, ‘tolerating the intolerable’ is that once my story of loss is in the air with other parents two parrallel universes come into being, (think string theory reality). One I inhabit, and one they inhabit where I am seen as a pariah. In this other, unforgiving universe, as you say; “we offer inconvienent truths and foretell disaster.”
    How is it possible to attend class reunions carrying one’s life story in silence because no-one wants to hear it?

  21. dear emily,
    i passed on this link via my facebook page and have forwarded your blog entries to my friend sarah whose five year old boy jacob has mecp2 duplication syndrome. he is one of about a hundred boys in the world with it. he, like ronan, will likely not live out his childhood years and probably succumb to seizures and a regression of all skills. he is also a beautiful child to behold, like your son.
    i think of you every day multiple times. all my love goes out to you in your journey with sweet ronan.
    calvin’s mom

  22. Emily…your NYT article was a perfect cure for all ambitions amuck. Sometimes I think that our most formidable struggle seems to be worldly ambition vs being the best parents we can be. I have the moments: those fleeting moments where I imagine losing my children. The fact that you are-for sure-facing and sharing all parents’ darkest possible experience with dignity amazes me. Your family has my heart and I really hope that you can believe that you will someday see your son again after he passes. I do. I really do.

  23. Emily,

    I was touched by your piece in the NYT. I am a dad on a similar, but different, path as you and Ronan. My daughter was born with rare chromosome abnormality with an uncertain prognosis. She is now 12 years old and we struggle with ongoing medical issues while at the same time navigating “normal” pre-teen rites of passage.

    You are doing everything exactly right: love Ronan fiercely and live in the moment. I have loved Riley fiercely every day of these 12 years because we live in the moment. It’s all that matters.

    When we started our journey, I read that parents of “special needs” kids (I hate the term) are the only parents who want their children to precede them in death. This sentiment was a punch to the gut but I completely understand now. We all experience the same arc of life but in different ways. It’s the love of others that gives life its real meaning. In this sense, Ronan is experiencing a full life because of the love that surrounds him. Peace.


  24. Hi Emily,

    Thank you! Thank you for writing this and sharing your story about your beautiful Ronan. My delicious 5 year old daughter is also not going to live out her childhood – Matilda has been diagnosed with Batten disease, an always fatal neurodegenerative genetic condition. There are days when I am at peace with that and days that I am not. Your paragraph about how you spend your days was refreshingly like our own. Acceptance. Living in the now. Go you Dragon Mother.
    I linked to your article on my own blog and when it wouldn’t work for some people, copied and pasted it with full credit to you, I hope that is ok?
    Thank you so much and all the very best to you and your beautiful family.
    mum to Matilda, age 5
    Melbourne, Australia

  25. Emily,
    I read your article in the New York Times on Monday and was moved to tears. Since then I can’t stop thinking about you and Rick and Roman, and I have read every post on your blog. Your thoughts on grief, life, love, religion and loss are beyond illuminating.

    I have not lost a child, but lost both parents at a young age, and am still trying to figure out how to navigate the world without them. You have made me rethink so many parts of life through your writing, and have taught me that grief is a part of love and not necessarily something that has to be run from.

    You’re a beautiful writer. I know that nothing compensate for what you are and will continue to go through, but I hope you know that your talent and willingness to share your story have had a profound effect on many. I will never forget you or your son.

  26. Emily,
    I am another Dragon mom of my sweet Heather who has never said a word, not moved unless I move her, and does not light up when I walk into the room. But does understand love, we call her “the love weaver”. We have been near death several times because Dr.’s told her life would be hard and short. You have given me language to express what my life as her mom has felt like, very disconnect to our culture in many ways. Mine has been a long journey and at one point I had to start asking myself what do I need? I started addressing all the elephants in the room. Including the final scene and who takes over from there.

    You are couragous and I hope to read your book as I hope to find a publisher for mine.


  27. Dear Emily,

    I came across your article three days ago by accident, thinking it was an update to the Tiger Mother book, and was devestated by what I read. I have read about half the entries in your blog while crying over your many levels of loss. Like another poster, I too am not religious but have prayed for your son and will continue to do so. You are helping me change my interactions with my two young chidren, who often frustrate me. I am trying to appreciate them more and be more patient with them. I will continue to follow your story and ponder the answers to the questions you ask.

    Thank you for your wonderful writing and open heart.

  28. Thank you very much for the article you wrote in the NYT. I was a dragon mother, too. You help others understand our world a little bit – which is so hard to do without glossing over either the good or the bad.

  29. I, of course, am a stranger; who had never heard your story until the New York Times article. Words could never express the emotion that your article brought up within me. I have never been dealt the news that you have about sweet, sweet Ronan. But, I have grieved the loss of a healthy child just like you. My loss is lighter, yes; but your words made me feel not-so-alone. I have been angry, pissed, wanted to say the f-word (and do!) SO many times because of the “situation” our son faces medically. Family has been the worst to insert their “It could be worse(‘s)” and I am infuriated every time. I suppose it could be much worse. I suppose some would love to have “only” our trials. But no matter what, if it is the “worst” thing your own child has ever faced; it is clearly THE worst thing. Thank you so much for putting into words what so many of us ‘special needs’ parents know that parents of ‘average’ kids do not –that it really isn’t the preschool, the college or the football position that matters. It is the day we are in, the smiles our children give us and the moment we have right now. Beautiful words.

  30. Thank you for sharing Ronan’s story with us. He is so beautiful. You are an incredible woman. I am so sorry for what you are going through. The article was amazing.

  31. Thank you, thank you, a million times thank you. As much as I cried reading your piece, I can’t imagine the courage and vulnerability it took to write it. Yours is the best parenting advice I have ever read. Thank you.

  32. allison bradbury

    Thank you for your willingness to explore the rawest of human emotions, your effort to put those feelings in to words so that others may understand, and your bravery in sharing your words with the world. You are a true inspiration and will teach many to live a more meaningful life.

  33. Thank you for reminding us that we will all lose each other, if not equally soon then equally surely. Nothing else I’ve ever read has made me feel so urgently the need to practice absurd, pitiless, fire-breathing lovingkindness.

    I think you are helping people by writing with such wild courage and beauty about Ronan and your life with him. I don’t know if that is a helpful thing to know, but I think it’s true. “If you have not wept deeply, you have not begun to meditate” — well, more of us are meditating now. Many people around the country, and around the world, have started to feel something more about what life is, because of your work.

    Love — strength — mercy. Bless you all.

  34. Emily, I am in awe, not just of your talent (which is considerable), but of your courage in sharing your story. Little Ronan chose his parents well.

    Ronan is beautiful. Thank you for sharing him with us.

  35. Emily,

    I know that you have better things to do than read at the moment, but when you have some free time, I highly recommend the book “Saving Henry – A Mother’s Journey” by Laurie Strongin. Laurie and I ran into each other a few years ago and the loss of her son after a short, illness filled, joyfull life has shaped her in ways that are worth learning about. I wish for you that you are able to enjoy every moment of joy that Ronan brings you. Although the duration will be comparitively short, you’ve already figured out a lot of the stuff it took me 15 years of parenting to figure out.

    My thoughts are with you.

  36. Emily,

    After reading the NYT piece and Little Seal blog, I think so often of Ronan. And when I do, I cry. I cry sitting at my kitchen table, I cry while driving, I cry while sitting at my desk at work, and I cry while writing this. I think of the beautiful boy in your pictures and I think of the light fading, as you wrote, and my heart – a stranger’s heart – heaves. I can’t imagine the pain you must feel. But I can imagine the fierce love you must feel for your boy. The world, cruel as it may be, can never take that love away. It’s yours forever. Thank you for your words and the reminder to be present for our children, to just love.


  37. Emily, thank you for your words and sharing your story. Your strength is a lesson to us all. You have so much to teach us about what it truly means to be a parent. Much love to you, your husband and to the beautiful little boy that is Ronan. x

  38. Emily,
    As you know, your article touched me very deeply, as a parent of a 5 year-old child with a disease and prognosis similar to Tay-Sachs. I read these comments searching for other parents like us, a constant quest for which the result is rarely satisfying. I was brightened to see some posts by other “special needs” parents, but what struck me was the “typical” parents’ comments. They were moving and honest, not trite or inappropriate. These are the things people our lives want to say to us, say behind closed doors to other people, but we never get to hear. The extreme sadness for us. I would never want to hear these things to my face and I’ve told people that many times. But, because of your article and through your blog, I just got an accurate understanding of what people are really thinking about our life as parents to our terminally ill children. Thank you for the courage to publish your Op-Ed and write your posts.
    Katie Harter

  39. It’s been several weeks since I read the NY Times article, and since then I’ve read the blog and some of your work on The Nervous Breakdown. It is all incredibly beautiful, and makes me weep and rage that this is happening to you, your husband, and your beautiful little Ronan. While we’ve never met, your family is in my heart. I think of you and your son, and your advice to love and be here and now when my daughter wakes up in the wee hours of the morning. I sit in the rocking chair and I hold her as she sleeps, and I am reminded of your eloquent truth- that love is all there is. I hope for your family to have as much time and joy and love together as possible, and I hope that there will be treatment and a cure of Tay-Sachs.

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