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.