Monkey, Baby, Lion – Guest Post by Weber

Last March I visited Emily, Rick and Ronan in Santa Fe – this was the first time I had met Ronan, and it was shortly after his Tay-Sachs diagnosis, in January 2011.  This May I flew from Boston to ABQ to visit again.  

I’d heard from Emily about how Ronan is doing – through this blog, facebook, and by phone, email and text – and so had some idea of what to expect. Certainly not the changes one would usually expect in a child between the ages of one and two.  As the disease has progressed, Ronan has lost his  sight and seems to be always gazing at a middle distance.  He can’t control his arms and legs, nor hold his head up –  so he is a sweet soft lump, an oversized baby who needs cradling and support, one of which is a stuffed turkey that provides head support.  He also has a neck support that has animal faces on either side.  Monkey, baby, lion.

Ronan doesn’t seem to respond to any visual or auditory clues, but he occasionally makes satisfied lip-smacking sounds and happy sighing noises. I think they’re happy noises. Ronan is clearly surrounded by a tidal wave of love, and if love could cure Tay Sachs, that would’ve happened long ago.

Ronan can still eat. Slowly, mushy food and liquids, but he is still able to swallow. This is, clearly, very important. The decision to move to a feeding tube is not to be made lightly and is not something, at this time, that Emily and Rick want.

Emily has already mentioned that Ronan has seizures. With medication, the seizures are fewer, but they still happen. He has what Emily calls “screamy seizures,” where the fear center of his brain is being triggered and he cries out. This did happen while I was sitting in the backseat of the car with him – he shrieked and his little arms and legs went stiff. It lasted only maybe half a minute, and he seemed to go back into his peaceful state.

We hung with friends, old and new for both of us. We went to Chimayo, which I’ve heard so much about. On N.’s suggestion, we stopped at Lake Santa Cruz, which was beautiful and blue in contrast to all the New Mexico beige, and so, so perfectly quiet.

We did some kick-ass yoga and ate amazing food (has anyone else heard of
escabeche?!) We hung out in the outdoor whirlpool and missed the solar eclipse. We spoke, carefully, of what might happen next.

I think that is the hardest thing – not knowing what will happen next or when. (Well, one of the hardest things – not be able to delay or stop the disease in any way is insanely awful). Will Ronan still be with us in the fall, when Emily’s new teaching schedule begins? Will he be one of the babies memorialized at the next Annual Family Conference hosted by NTSAD (or as Emily calls it, Tay Sachs Spring Break)? Will he stop eating and begin hospice care?

Emily and I go way back.  Not as far back as some her many friends, junior high and high school, but we did meet in our early 20s, and I’ve seen her through many life changes.  I worry about what will happen to Emily.  Everyone who reads this blog knows how strong she is.  When Ronan is gone, her life will change dramatically, and I think it’s a shift that could leave even the strongest reeling.

There will be an NTSAD fundraiser in Ronan’s honor in Santa Fe in September – stay tuned for details.

15 responses to “Monkey, Baby, Lion – Guest Post by Weber

  1. Thank you for this update. The distance between posts is telling. I think about Emily and her family every day, longer and harder on days when her online presence is subdued on nonexistent.

    Imagine a world in which love could heal…

  2. I shared this; such hardship, but the love of “mom” pulsates through in the photograph!

  3. if love could cure tay sachs…..this is why emily will be ok: ‘tay sachs spring break.” humor, talent, strength, purpose and friends/family. having lost a child, there is a black hole in your heart but after awhile u realize u might only be more acutely aware of it on holidays, anniversaries, a song that sneaks up on u. so it is unbearable and bearable at the same time.

  4. I have long to see Ronon’s recent pictures. Thank you for that! I smiled looking at him — the kind of really deep from the heart make my eyes swelled with tears type of smile. I must say, even though the sickness strikes him ever so severely, he has grown to have a beautiful toddler’s face, much more mature (and indeed so handsome) than his baby face. This must be the reflection of God’s grace upon him. Such transcendental grace makes what we called normal human vision and mobility pale like an old dated color sheet. Ronon does not draw or sing like a toddler his age but that is by using his hands or his voice; nevertheless I cannot deny the beauty that manifests on his face! When Ronon is gone back to God’s bosom, I hope Emily will sustain not by her own strength but by the same beautiful and everlasting beauty and grace that is on Ronon’s toddler’s face.

  5. What a beautiful post. If only all disease could be cured with love. Perhaps that is the ultimate goal? Why we search for cures in the first place… love.

  6. About twenty years ago I received the incredible gift of seeing my dear friend through the last week of her life. Cancer was taking her, and by having me to care for her, Mary Anne could remain at home. The recent months had taken quite a tole on her husband who was barely holding himself together. He spent a great deal of time alone. At the time I couldn’t understand, but now I see that he was trying to find a way to let her go, the hardest task of his entire life. When Mary Anne left us, it was sometime in the night, for I woke up on the couch next to her and chastised her for not waking me up to say good-bye. What I felt over the next few weeks was something I never expected. Over those few days every single ounce of my awareness and strength was focused on my friend–what she needed, what medication, what position to help her breathe, what small comfort–anything at all. In her absence, I felt like a body thrown off the planet just floating in space. Today, whenever I think of her, she is beside me. Her love changed my life forever, as Ronan surely is changing every life he touches. This is how angels are created.

  7. i have recently discovered your blog and i do not have the words to say enough how heavy my heart is for you. i think about your beautiful, beautiful boy ronan and your family every day. i am sending you thoughts, hugs, love, peace and light.

  8. Hi Emily It always takes me some time to find the words to say I am so moved by your journey. I am glad to hear that Ronan is still swallowing and thus eating. The next step is really hard. As always, I am thinking of you and am on call…….. Susan

  9. Thank you for this. I wish I could do more than remember you all in prayer. He is a beautiful child.

  10. Thank you for this … Emily and her family are so often on my mind, and in my prayers.

  11. Echoing others, what a beautiful babe he is. The waste…the lost potential…I will forever be informed, contribute financially and try to educate others on behalf of Ronan as a result of your blog. I check often and sincerely appreciate the updated posts.

  12. Please post the event! Dont forget

  13. Every time I read a post about Ronan, my heart hurts. There’s nothing I can say or do to lessen the pain for his family, but God, do I wish there were.

  14. I weep , long uncontrollable sobs for a boy I’ll never meet. As lay with my healthy 2 & 3 year old boys, I weep & wonder why u were the unlucky one. I can’t even recall how i stumbled across u r blog, but can’t take my eyes off now.
    For the beauty of ur writing, the strength of ur experiences & the hope of ur healing, I weep & I know I will continue weeping to attain the courage u have displayed.

  15. Pingback: Knowledge and suffering | Superfluities Redux

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