- Guest post by Weber
When Emily called me in January to tell me about Ronan’s Tay-Sachs diagnosis,
she asked me, through tears, to come visit. She said she wanted to people to
see Ronan while he is still well. I said yes without hesitation. I hadn’t
seen Emily since she was pregnant, and Rick longer than that. My husband also
realized that this was a trip I had to make, and stepped up to care for our 4
year old daughter while I was gone.
It was odd to talk to co-workers about the trip – when I would explain that I
was going away, they would say, “Oh, where to?” to which I would reply, “Santa
Fe.” The next – logical – question was, “What’s in Santa Fe?” Leading to me
say, “A friend.” But there was no easy way to explain that this was not a
care-free trip. As I said to a friend at work, “I think there will be lots of
crying. And exercising.” (As OtherEm noted, Emily exercises “like a demon.”)
I resolved to listen, help in any way I could, follow Em and Rick’s lead, and
hopefully offer some diversion – to temporarily lighten their load, if I could.
We DID have fun. Ronan IS fun, like any other sweet, smiling, chubby baby – so
chubby! He has creases in his knees! Listening to him coo and getting him to
smile was lovely. I adored giving him his bottle, and listening to his baby
snorts and snorgles, that look of intense concentration as he sucked it down,
and then the relaxed full-belly gaze. He seems like any other baby, although he
cannot sit up unassisted and cannot stand or “cruise” along furniture like I
think most almost-one-year-olds can. He would fuss occasionally, but then would quickly resume being content – Emily pointed out to me that he won’t go through a NO! stage; he will not throw tantrums.
Mostly, I just tried to listen. I listened to Emily’s frustration about being
tested for the Tay-Sachs mutation, only to discover that it only tests for the
most common nine mutations, not the 100+ that actually already exist, and
therefore did not pick up her mutation. I listened, as well, to her disbelief
in the odds that allowed not only her to be born with a genetic mutation that
resulted in her leg amputation when she was four, but her son as well, leading
to Tay-Sachs. I listened to her thoughts about what a memorial for Ronan could
be like – how we can celebrate his short life.
Emily and I went with Ronan to two appointments for Japanese acupuncture, which he seemed to thoroughly enjoy. We went for walks. We visited the Albuquerque aquarium. We floated in an outdoor hot tub, at night under the moon and stars. I took lots of pictures – easy to do, since Ronan is ridiculously cute. I had Emily work me out – I need help with my flabby self, and I knew it would help Emily, as I think she secretly enjoys being a drill sergeant. I ate and
thoroughly enjoyed Rick’s delicious dinners. Emily and Rick are both crazy
funny, and it was nice to see them crack jokes with me and with each other, even
through a haze of sadness that is present in their bright, sunny house.
It was – it is – hard for me to comprehend what Emily and Rick are feeling. On
the ride home from the airport, I looked at my daughter and tried to wonder what it would feel like if her doctor told me she had a year to live. The flash of
pain I felt was searing in my stomach, and that is just a hypothetical.
I will keep reading this blog, I will keep listening. Even though I cannot take
away or prevent the pain, I hope that my presence – and the presence of all of
those of us who love Emily, Rick and Ronan, even those of you who may not know them personally – will help.