Ronan Louis

Dear friends and family:

Today it is with a heavy heart but firm purpose that I begin this blog. Earlier this week, my husband Rick and I received the worst possible news: that our son, Ronan, has Tay-Sachs disease, a rare, incurable, genetic, progressive disease that will claim his life in the next few years. Of course there are no real words to describe our sadness, anger, grief, and feelings of helplessness. Agony is not an experience easy to describe, even for a writer. Over the last few days I have struggled with how to tell myself how I’m feeling, how to tell the story of what’s happening, how to create order from chaos, which is what writers do (and often to our detriment). I have come up violently short. The narrative is empty. There is only a sense of hollowness, blackness, void, of wanting to literally crawl out of my own skin. Even this description is not sufficient. But I am a writer. I write. And just as I have written through every experience, euphoric or horrific, throughout my life, I will write my way through this, and I hope those of you who know and love Rick and me and Ronan will be a part of this record of his time here, on this blog, and many thanks to W for setting it up. Ronan means “little seal” in Irish; I knew it was what I would call my child when I met a boy called Ronan (and he was a boy then) outside the Lecky Library at Trinity College-Dublin in 1994 on a warm, rainy afternoon.

Today, although we do not know the full details of what lies ahead, we know that it will be the most difficult test of our lives; we know our time with Ronan is limited, and that he will change, and that we will suffer, but because we are his parents, and because we made a commitment to love him, no matter what, from the moment we saw his microscopic heartbeat on an ultrasound in a doctor’s office in Santa Monica, we will make sure that each remaining moment of his life is touched with beauty and joy and grace. This public record of his life is part of my commitment of unconditional love. In it, I plan to break every rule I bark at my writing students: I’m not going to edit or  “shape” my prose; I’m not going to identify “themes” and try to “tease them out.” (I will spell check, though!)

Writers tend to live in the past, dissecting moments and mining memories for stories, or in the future — what will happen with these characters? How will I shape this scene? Will anyone EVER read this story or essay and what will they think of it? What will they think of me? — and in so doing we rob ourselves of the present moment. My only task as a writer, from now until the moment Ronan passes, is to remain current, so I will begin each blog post with “today,” because today, this moment, this second, is all that Ronan knows or ever will know. He does not understand that he is dying, and he does not care. He is not in pain, and we are assured that he never will be. In this way he is mercifully innocent. There is no cure for this disease. With all of our degrees and intelligence and earnestness, there is no arguing with biology. There is nothing we can do but love him. I don’t believe in God or heaven or angels, and at the moment I have very little faith in this world, but I do believe in the transformative power of love. Only that. Ronan will feel that love — if not with all of his faculties, than in his body, in our breath on his head, in the lightest touch, in a vibration. He will never be without it.

Akira Kurowasa once said that “to be an artist means never to avert one’s eyes.” I read this in Robert Olen Butler’s book about fictional craft on the plane from Los Angeles to Santa Fe, in the days (was it less than a week ago?), when I cared about finishing my novel, or pursuing a life of art — things that don’t matter to me today. But I’ve been reminded of that quote this week as we discuss Ronan’s prognosis with doctors and specialists who poke and prod and examine him and take his blood and talk to us as Rick and I sit on crappy chairs and cling to one another in the corner of overheated, badly lit rooms, repeating one another’s first names. I’ve been reminded by my friends E and T and L that I’m a writer, an artist, and that I need to ground myself, somehow, in that knowledge. I need to stay in my body.

Today, this is what we know: Over time, and in fact, quite quickly, Ronan’s brain will gradually deteriorate. The skills he has learned will disappear. He will lose his vision. He will lose his hearing, his speech, his ability to swallow, and finally, his ability to breathe. This will involve logistics and tubes and seizures and doctors and scenarios that frighten me so much they make me physically ill and break my heart every single time I imagine them. In this situation, imagination does not serve me.

Today, this is also what we know: That he woke up happy and giggling. That we began our morning, as we always do, with the three of us in bed. That we kissed him and he smiled at us. That he experienced joy, and so did we. And that this, too, will continue. We will laugh with him. We will live.

Today, I know that my family and friends stand with us, and that they will scream and cry and fight with me. I know that they are coming in droves (droves!) to be with us now, and I know that we will never be alone. I am grateful for those who have done research, called doctors, written letters and filled out applications when I could not. I am grateful for friends and family who got in the car or booked the first plane ticket, or just cried with me, or cursed the world, or made promises that I know, from a lifetime of friendship, that they will keep. I am grateful for my parents, who hold and love Ronan and don’t look at him any differently and never will. I am grateful for Rick, who is, as our friend M once told me long before I met him, “the world’s best human.”

Today, I also know this: I am Ronan’s mother, and I will greet all of this head-on. This grief will not take me down. I will reach out to friends and family and other parents whose children suffer and die from this disease. I will learn about it, even though what I learn is terrifying. If I’m able, I will contribute financially to the fight against it. And most importantly, I will stay present for my child because that is what is being asked of me, however radically unfair and grotesque and ridiculous it is. And today, and every day until Ronan’s last, I will never, not for one moment, avert my eyes.

Until tomorrow,




49 responses to “Ronan Louis

  1. My prayer and thoughts are with you and your family as you face this cruel and unfair obstacle. May he overcome and defy all odds. God bless you all

  2. Emily – thank you for making this commitment to write and keep us up-to-date on Ronan’s todays.

  3. Good you are holding each other close, and we are holding all of you. Much love.

  4. Emily. I was/am devastated to learn this horrible news. I have shed many tears for you, and Rick and Ronan and all of those around you. I hold my baby close as I think about you and only wish you the same. It is true that none of us knows how long we have together, but the anticipation of a time when we know we will be apart forever is agony. I, too, am cursed with imagination when it comes to these horrible truths.

    Know that David and I are behind you, supporting you, loving you, even from a distance. Thank you for this blog, I believe it will be enormously helpful to you, and it is a generous gift to give to those who care about you and want to know how you are all doing.

    Love to you.

  5. Emily, So incredibly sad to know your beautiful Ronan will be with us just a short time. I will always treasure our being together at Christmastime and to enjoy that cute little baby and meet your wonderful Rick. Emily, the sad beauty of your words and your courage to share this important time are lessons for all of us in how to live our lives and how to love one another. Know that we are with you always.

  6. Dear Emily,
    We have not met, but Diane B. shared your story and horrific news with me. My heart and prayer go out to you and Rick and Ronan. I hope that the “droves “of wonderful friends around you will be a palpable balm on your ragged hearts. I hope that each new day will present as a gift wrapped with a huge red ribbon. Hold each other tight. Smile when you can. Let your love be a big, fuzzy blanket to cocoon in.

  7. Emily,

    Thank you for your courage and your strength and your willingness to share with us. But most of all, thank you for keeping us connected to Ronan. We love you and support you.


  8. Alma Luz Villanueva

    Emily…I just received this from Nancy and I am truly STUNNED, by the news of your sweet boy, and also by your mother courage…I send you, your husband, beautiful Ronan, much love. It feels like this to me (as a mother of four), that by writing you are fully receiving Ronan’s gift to you, and passing it on, gracias.
    amor, milagros…
    Almaluz xoxo

  9. Ellie and Doug Shaw

    We are unbelievably devastated by your news. As you courageously begin this journey please know that you and Rick and dear little Ronan will be in our heart, our thoughts and our prayers always.
    Love, Ellie

  10. Emily,
    We are unbelievably devastated by your news. As you courageously begin this journey, please know that you and Rick and dear little Ronan will be in our heart, our thoughts, and our prayers always.
    Love, Ellie and Doug

  11. Emily,

    This is Claudia, Chris’s sister, bringing love and support from NYC. I just sent an email to you and Rick and indicated that I hoped would start up a site for Ronan. So glad you are doing this, both for yourself and for the precious spirit that is your boy Ronan. I am greatly moved by the poignancy and honesty of your first blog post. Ronan could not ask for more loving and dedicated parents than you and Rick. And yes, reach out. Always, always reach out . . . as Ronan reaches out to you every day.

    I, along with so many others, will be reading and following this blog. Peace and strength to you . . .

  12. Emily, my heart is breaking for you, your husband and Ronan. I’m Linda W.s friend from the Mendocino Writers Conference. I have no words to express how sorry I am, but I do believe that writing will help you cope, and will bring to your family the power of a thousand hearts to surround and hold your beautiful little boy.

  13. Emily:
    I have no words. May whatever powers there be bless you and your family. Everyone here at Antioch wishes all of you the strength to endure and the courage to hope.

  14. Emily, I am so sorry. Such stunning, heartbreaking news. Will be praying for all of you
    Love, Diane

  15. Emily, You are the most courageous person I have ever encountered. You inspire me and break my heart. After such a shocking and difficult post, the thing that I’m left with is the image of Ronan giggling happily. With much love and laughter,

  16. Oh, Emily. My heart is aching for you. What devastating news. What stunning courage and grace you have in the face of such pain. If there is anything I can do, at all, please let me know.

    Love and strength,

  17. Emily and Rick
    A new media writer, I often turn to music, or images or sounds when words fail to convey properly what I want to express. But there are times when NO form of communication can convey what is in one’s heart or mind. This is certainly one of those times. You are surrounded in person and spirit by many friends; I know that will be of great comfort to you, and that each of us wishes we could give much more . . .

  18. I’ve written this to you privately, but I’ll also put it here: dear, sweet Emily, I am so sorry for you and Rick and Ronan. I send you all of my love and light and strength.



  19. Emily,
    My thoughts and prayers are with you, Rick and Ronan. May the writing help heal your heart.

  20. Oh Emily. There aren’t any words. And there is no justice. May God hold you and Rick and Ronan in the palm of his hand. I would like to say something wise and deep about Ronan’s beauty and marvel and your deep love for him but there is nothing. All I can say is that maybe that love bridges the gaps and caverns that we think we might fall into. Sending you love and strength.

  21. Emily, I’m riddled with sadness and love for you and Rick and lovely Ronan. I will send love daily and follow you here. I was missing you before and now it’s ten times the ache. Please know I’m here and that you are in my mind and heart. Much love, k

  22. Dear Emily,

    I pray for your strength and courage to be upheld from the love of all of your friends and family. I will say a prayer everyday for your precious son. Thank you for sharing with us.

    Love to you Barbara (Jenny P’s mom)

  23. Dear Emily,

    I am deeply shocked and saddened. Anything I think to say about this news seems largely inadequate. You are such a wise and amazing writer, teacher and mother. I hold your beautiful, smiling baby boy in my heart and all of my hope and love goes to you and your family.

  24. Brittany Michelson

    I am deeply shocked and saddened. Anything I think to say about this news seems largely inadequate. You are such a wise and amazing writer, teacher and mother. I hold your beautiful, smiling baby boy in my heart and all of my hope and love goes to you and your family.

  25. Emily~
    I will keep you, Rick, and Ronan in my thoughts. Sending you all love, strength, and courage. And thankful that you have such a lovely and supportive community of family and friends to be with you.

  26. Emily, I will hold you and your family close in prayer. Please let us know if there’s anything you need us to do.

  27. Dear Emily,
    I can not even imagine how your moments and gaps between the moments must feel or not feel. Just know you can call me anytime anywhere to help you with whatever you need. Lots of love to you all.

  28. Dear Emily,
    You and your family are in my thoughts and prayers. Sending you love, hope, strength, and all the joy that you can grab today and in the todays to come.
    Much love to you all.

  29. Emily,
    Thank you for writing, for sharing your love, your heart–with the rest of us and with Rick and Ronan. I make this commitment to you: I will read every word. I will not avert my eyes, either, even as tears stream from them. You are brave to share this, but the world needs to know, to see, to witness the love of a beautiful, baby boy and his parents. This is what’s real, what’s reality.
    Much love and aloha,

  30. My heart hurts reading this, Emily. I don’t have the right words to say. I don’t think there are words, but despite that you are doing a good job of putting some on paper. I am thinking of you and wish you strength, hope and quiet moments of happiness with your sweet kiddo.
    Amber James

  31. Talya Jankovits

    Emily – I am hollowed for you. You, Rick and Ronan are in my thoughts and prayers.

  32. Dear Emily,

    We don’t know each other, but I’m friends with Cheryl Strayed, who shared this link with me. There is no way for me to convey how moved I was by this post and the two others you’ve put up. I love what Kim said about reading every word, and I’m committed to doing that too.

    You son is astonishingly beautiful. I hope you’ll post more pictures of him; I would so love to see them. Like you, I’m not a believer, but I will say this: life is a deep, bittersweet mystery and the way you’re wading into the darkest and yet potentially most transcendent of its waters right now is a thing of beauty. Your fortitude and tenderness take my breath away. Your son is so lucky to be yours, and I can’t help believing that you’re also so lucky to be going the distance with this precious young soul.

    And too, I can’t help thinking that your words are going to go far, far into the world and provide immeasurable sustenance in Ronan’s name. In that way, his life will be a profound gift to countless people. Maybe meaning isn’t something you find, but something you render. Because, at the risk of sounding trite, your response to Ronan’s diagnosis has already been inexpressibly meaningful to me.

    Most sincerely,
    Elissa Wald

  33. I am stunned with sadness. Sending you love, light and prayers.


  34. Dear Emily,
    I also believe in the transformative power of love. And you are, without a doubt, loved by many. I hope that the knowledge of this will comfort the three of you with each new day. You, Rick, and Ronan will be in my thoughts daily.
    With Love,

  35. I salute your fierceness. Other-E. x

  36. Pingback: Tribulations « museworthy

  37. Emily and Rick,
    Our family heard the news about baby Ronan the other day..There are no words I can say that can heal the pain. Please know you are in our thoughts and prayers as you begin the next chapter of your life. We love you dearly and will be here for you always! Be strong!
    We love you!
    Kerry, Marc, Josie, Joanna, Julia Wells

  38. Emily, ma belle. I just heard of Ronan’s diagnosis and read this post.
    Tears are in my eyes for the agony and injustice and broken heartedness, and also for the everyday joy of life in this minute. I wrap my virtual arms around you and your Rick and your Ronan, and keep you in my thoughts now and always. You have so many giving you strength and support; I am gladly among them if you should ever need.

    You are a lioness. Continue to weave this narrative into the fabric of all our lives.

    Little Ronan, Rath De’ ort!

    Love, truly,
    Sam Dunn

  39. Emily, this is the most heartbreaking news. I can’t imagine anything more difficult or tragic. I send my deepest sympathy as you walk this hard path, and all my love. I will follow the blog and you and Rick and Ronan will be much in my thoughts and prayers. Paulette

  40. Dear Emily,

    I don’t have the words. The heart breaks.

    Just know that you, Rick and Ronan are in my thoughts and and prayers.

  41. Emily,
    I am spending another late night with Violet, and we are aching for you. I will think about you, your husband, and your beautiful boy every time she smiles. Thanks for sharing Ronan with us.

  42. Today I met you through your blog via my dear old friend Amy…. Your family is in my thoughts as I shed tears for your loss and smile with the knowing that being a mom is a blessing, and you are obviously an amazing mama.

  43. Dear Emily,

    I am so saddened to hear of this devastating news of Ronan’s diagnosis. I can’t imagine how difficult this must be for you and your family. You are all in my thoughts and prayers.

    With love,

  44. Emily-
    I sent you a message but I wanted to comment here too. I am so very, very sorry.

  45. Hi Emily I have read your posts and trully feel for you, Ronan and your family. We ourselves are a little further along the Tay-Sachs journey with our son Ethan 2 1/2 years old. Remain strong and keep positive Ethan has taught me to look at life with different eyes and appreciate many things I often took for granted. We are in the UK and at present the only family I know of in the UK but if I can help you in any way with advice or questions please feel free to contact me. The best advice and help I’ve had so far has been from other parents of Tay-sachs children as no one else understands the feelings we our experiencing. Xx

  46. Emily – this took me right back to my very feelings following Conner’s diagnosis in 2005. I hate that you have to go through this pain, it is truly heart breaking every time I learn of a newly diagnosed child. Im glad that you reached out and I hope I can help you through this in some small way!

  47. dear emily,
    this is calvin’s mom, christy. thank you for sharing calvin’s story. might i ask how you found it? somewhere along the line i heard of your memoir, poster child (could it have been on Fresh Air?)
    i am so moved by your story, your writing, your commitment and love. i first heard of Tay-Sachs disease a few years ago. it might have been on an episode of PBS Frontline called The Undertaking, one segment of which young parents of an infant were having to prepare for his imminent death. i cannot imagine how you must feel but i hope to glean some understanding as i will follow Little Seal.
    all my very best goes out to you and your family on your daily journeys through life.
    xo, christy

  48. Oh, I needed to read this today. I’m so glad our mutual friend T pointed me here. Thank you for what you are doing here. Having recently experienced the feeling of finally being the mother to my 3 1/2 year old daughter (in an intense event of trauma that has changed her life and the life of her parents) in that way you are proclaiming, “I am Ronan’s mother, and I will greet all of this head-on,” I have been unable to write about what happened outside the little friendly bubble of Facebook. I am so inspired by your courage here, by your giving voice (and I hope, some sense of peace for you in what must be an incredibly heartbreaking process) to these things. Thank you, and I look forward to reading more.

  49. I came across this blog and am so very saddened for you and your family. You are in my thoughts and prayers. Sincerely, Sue

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