Three years ago today our beautiful, round faced,  brown eyed grandson, Ronan, passed away in the early hours of a chilly day in Santa Fe.  Taken from us by the nasty and ugly deteriorating affects of Tay Sachs disease.  He was just shy of his third birthday and had lived with the wretched and progressive symptoms of seizures, inability to swallow, blindness and no mobility since his diagnosis at 9 months of age.   So his death was not a shock, just a tragic reality of pain and extreme loss!

I have experienced my share of loss in my life:  my father when I was 10 months old, my mother died in my arms when I was 24, my beloved grandmother (whom we lived with) died when I was 6 years old.  All of these deaths seriously impacting my life.

I have attended more funerals,visitations and funeral lunches than I care to count as my husband of 49 years is a Lutheran pastor.

I know about the grief process.  I have “worked through” it many times and have come to a livable truth.  But Ronan’s death was different!  I could not get my head or heart around it!  I could not “get over it”!!  I read books, tried to meditate, exercised, talked to friends and acquaintances who had lost children, took sleeping pills, anti-anxiety medication, saw a therapist, ate chocolates, drank wine, made a memorial in our garden with a statue resembling Ronan with a bench to sit on and try to find peace, but nothing worked. Until this year, this time, this anniversary when I somehow decided to open a different box, look in a new direction with a more personal, reflective and open perspective.

Ronan’s death was different!! It was different than any of the losses I had experienced.  He was a helpless child, robbed of his childhood and his life.  I was one of his caregivers during his illness.  I was a nurse and I understood only too well from the very beginning how the impact of this disease was going to play out.  It was too devastating to share and I tried with all my being not to think about it.

I experienced a double grief, because as a mother I could not protect my daughter from the inevitable pain. Always feeling helpless knowing that nothing I said(even if I thought it was comforting) would really make it better.  No parent wants to be confronted with those kinds of realities.

But, I watched my daughter explode into this fierce, resilient, compassionate woman who was a mother to be reckoned with as she introduced her baby to the world.  Taking him to restaurants, coffee shops, tourist spots, conferences, readings, walks on the arroyo and more walks, in planes, buses, and cars.  All the time absorbing the stares and comments of strangers, proud  of her son and sometimes responding to a stare or comment with a zinger of a reply which hopefully made that person more sensitive or mindful.  Forever out there, forging ahead with grit and resolve through dark nights and lonely days.  My daughter was always a “strong willed” child as we termed it in my day, but now she had become a force to be dealt with and that made me very proud and gave me peace!!

And then one day, it got better!  She introduced us to the man she had been dating. Frankly, I was not interested in meeting  this man.  Life was complicated enough without someone else coming in and then out of it.

But there was something about this guy.  I liked him!!  He was intelligent, handsome, sophisticated, and funny.  He invited us to his home (a historic catholic church he had restored, filled with antiques and family heirlooms that he actually cared about and knew their history).  He made original cocktails and cooked us fantastic meals, told us funny stories and made our daughter laugh once again!! He provided us with a respite and made us feel cared for after a long day of giving care.  His very presence brought me peace.  And I liked who my daughter was around him.

He embraced Ronan and was not at all put off by his serious condition.  He helped take care of him and took him places with my daughter.  He was with us when Ronan passed and we always wondered what we would have done without him there. Now, he is our son-in-law and the father of our beautiful, fun loving granddaughter, and we are so thankful!

We are often hear criticism of the younger generation because they do not live their lives as we think they should or conform to our  code of standards and are too into themselves to get the real meaning of life. Our daughter has a large circle of friends and they all got it!! They came from all over the United States and abroad to visit Ronan after he was diagnosed and we knew that the time he had with us was limited  They interrupted their lives and work schedules, bought airline tickets that I am sure impacted some of their budgets, made arrangements for the care of their own children, used up their vacation time, BUT THEY STILL CAME!  They fed Ronan, held him, rocked him and were a part of his small world.  And toward the very end , they weren’t put off by his feeding tube or his frail emaciated body that had to be wrapped in a a puffy quilt so we could hold him with out hurting him.  They brought food and wine and sat with us and called to see if we were ok.

Our friends and family came long distances to meet and greet and hold Ronan and support us after Ronan was diagnosed and for his memorial service.  They called and kept in touch during his illness and after his death.

A wonderful couple, Nancy and Libby,  friends of our daughter, gave us their retirement home in Eldorado to stay in so we could have a place to go when we were “off duty”. It was place to have our own space and peace;  to regroup and process.  This was a gift so generous and unimaginable that I am still in awe of it to this day!

We live in a world filled with cynicism and fear and often overlook the goodness and charity of other human beings.

I am choosing to remember all of the acts of humanity I witnessed and was a recipient of during Ronan’s life and because of his life.  I am going to rejoice and be grateful for his short, but significant life.  I am always going to grieve on the anniversary of his death, but also celebrate the impact of his tiny being and NEVER GET OVER IT!!

This is my living memorial to him!!

Mary Rapp, Ronan’s grandmother


  1. mary,

    when my father came cross country for my son’s memorial the rabbi said the same thing to him, you are grieving for your daughter and your grandson. i was living in new mexico when emily was there and had hoped to meet her, especially when she came to read in taos on the anniversary of my son’s death. i told her that when i saw her i would burst into tears, having followed ronan’s story from the beginning. she told me, that’s okay, i saw a stick today while i was driving and started to cry because it looked lonely. my own health kept me from going to the reading unfortunately. i am so happy that she met kent and had a daughter. i am sorry for your family’s pain and grief. ronan was so beautiful. it’s been 11 years now and i am back in california where my son grew up. you don’t get over it, you carry it with you and it keeps evolving. much love to you and your family. this was a beautiful article.

    donna kuhn

  2. Genevieve Steidtmann

    Heartfelt, beautiful, sad, and wonderful, Mary. I know how much love and care you gave to both Ronan and Emily. You were the true definition of a selfless caregiver. Thank you for sharing these beautiful thoughts. Hugs to you and your entire family!

  3. I followed Ronan’s story and have Emily’s book about her journey with him. I reread it every so often, and always learn something from her writings. Thank you for sharing your memorial to Ronan.

  4. Monica Gettleman

    Just beautiful and so heartfelt. Thank you for writing this and sharing. Your grandson Ronan touched so many lives including mine.

  5. Mary
    We met at an NTSAD conference grandparent support group session. I feel the early stages of your pain over Ronan’s passing. Our Krystie left us just 8 months ago. Someday, I hope my heart will again soar with joy and swell with pride for knowing Krystie and having a small part in her brief life. For now, my heart aches with longing to feel her weight in my lap, to hold her chubby hand in mine, brush her silky hair and kiss her soft cheeks again. You are correct; the loss of a child is a different kind of grief. I’m sorry anyone has to experience it. I’m glad you are able to see bright spots through your grief. You give me hope.

  6. dear mary,

    this brought tears to my eyes. i followed ronan’s journey through emily’s writing and felt, somehow, as if i knew him. i am so happy you have such a wonderful and brave daughter, amazing son-in-law and granddaughter to embrace. thank you for sharing these intimate images of your life.


  7. Thanks for sending this to us. It is very moving. Hope all is well with you and Roger. Keith had cataract surgery this week with good results. Aldine and Keith

    On Mon, Feb 15, 2016 at 9:40 PM, Little Seal wrote:

    > ronansmom posted: “Three years ago today our beautiful, round faced, > brown eyed grandson, Ronan, passed away in the early hours of a chilly day > in Santa Fe. Taken from us by the nasty and ugly deteriorating affects of > Tay Sachs disease. He was just shy of his third birth” >

  8. Mary, although I don’t believe we have ever met, I was Roger’s room mate in college. Thank you for posting this! It was a powerful and loving reminder that we live in a connected world that brings meaning into the dark places we experience. Please do say hello to Emily (I met her on a book tour) and Roger for me!

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