The Malta Independent 8 March 2021, Monday

Marie Benoit's Diary: Coping with serious illness in a pandemic

Marie Benoît Sunday, 17 January 2021, 11:00 Last update: about 3 months ago

I met Margo and Rick Tiffen a handful of years ago. They had brought down their two children from Connecticut to New Jersey to my grandson’s birthday party. Their son Sebastian is very ill with life-threatening food allergies, and a rare chromosomal syndrome. They have many doctors on the case, and are hoping someone will have a breakthrough soon. Margo has just been asked to join the board of the Foundation for his syndrome, so that will be an opportunity for her to help push things forward on the research end. Let her continue her story in her own words.

Sebastian and his sister Nico (This photo was taken in June before he became seriously ill)
Sebastian and his sister Nico (This photo was taken in June before he became seriously ill)

"My husband Rick and I have a bit of wanderlust. Rick is originally from Santa Fe, New Mexico, where his family settled after emigrating from Spain over 400 years ago. I'm a 4th generation New Yorker. We met 15 years ago when we were both living in Brooklyn, and we subsequently lived in London for 5 years, then Santa Fe, back to NY, and eventually settled in Connecticut. On the way we had 2 children, our 10-year-old daughter Niko and 7-year-old son, Sebastian. We bought an almost-200-year-old Georgian/Victorian home and have spent the last 6 years fixing it up, building gardens, and raising the kids.

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I've worked in tech and publishing for over 20 years and Rick is a photographer, artist, and photo editor. Luckily, we've worked virtually for years, so that aspect of COVID did not change things much for us. But now our kids are home all day, Niko homeschooling (which I oversee) and Sebastian distance learning.

The twist in our story is that a few years ago we discovered that Sebastian has many life-threatening food allergies. That alone was a huge adjustment. But it was just the beginning. Two years ago, Sebastian was diagnosed with a rare chromosomal syndrome. Due to this, he has chronic health issues. There is not much known about the syndrome and we are focused on trying to further research to help Sebastian and others with this syndrome.

The pond with the magical koi which seem to have appeared from nowhere


I'd like to share a little about our lives during COVID. However, it comes with a backstory...

One thing Rick has always wanted, is a koi pond. We talked about it, but it seemed like a big project, and we thought 'someday'. At the beginning of the summer in 2019, we bought half a whiskey barrel and made it into a little pond, with plants and a small fountain. Rick and the kids were really into it.

A few weeks later, Rick called me over to the barrel, telling me "There's fish in here!" I thought they're probably tadpoles. The pond sat on a pile of rocks. How would fish ever get in there? "I think they're koi fish!" Rick said.

I said "Babe, you're crazy." But there were little fish in there. We were stumped as to how this could happen. Then Rick remembered that the water lily he bought from the garden store had been taken out of a koi pond. There must have been koi eggs on the bottom.

So there was a rational explanation, but I couldn't help but think that the fish were somehow a gift for Rick. From the universe, a higher power, however you want to look at it - I felt they were a present for him, for a reason.

The fish became Rick's buddies. He took care of them in the barrel, and then installed them in my office in a fishtank for the winter. There were 9 of them, and it was amazing to watch how quickly they changed. They started out smoky grey, but over time they transformed - some to shimmering gold, some pure white with orange splotches. Two of the fish sported little pencil mustaches for a while and looked like little old men, then the mustaches faded and the tips of their fins turned black.

We knew they'd soon be too big for the tank. The plan was for Rick to dig a pond over the summer. Then COVID hit and the world flew off its axis.

As our world became smaller, we began to realize that what seemed like a few weeks of postponing plans, would mean cancelling them. We tried to accept the disappointment of . not seeing the people we love.

However, that paled in comparison to what happened next. Sebastian had been healthier than he'd been in ages, because he wasn't constantly picking germs up from school. But then he developed an infection, and the antibiotics didn't work, and he quickly became very ill. We went into the hospital and came home, expecting that he would heal and get better.

But that's not what happened. Sebastian became much, much sicker than he's ever been. And it was relentless and exhausting. I always envisioned that if you or your child became really sick, the Drs would check you into the hospital and run all the tests you needed and figure out what's wrong. They would give you a diagnosis and a path to healing. And you would go home and start down that path.

But I've learned that is really naive. It is a long, excruciating process to a diagnosis. There is nothing more defeating than having an acutely ill child and watching him struggle every day. Getting medical tests done during a pandemic is ridiculously complicated. And given his immune issues, the only times we left the house over the last 8 months have been to go to the hospital or Drs.

So. All this time, the fish are getting bigger, spending hours a day grouped together in a corner of the tank, making kissy faces at their own reflections in the glass. Unaware of the multiple crises unfolding in our house and in the world outside. If I was that shiny and pretty, I guess I'd do the same thing. And every day I told them, you'll get your home. We'll figure it out.

Eventually I told Rick, we are not going to have the time to make that pond. So we hired a landscaper to build a beautiful koi pond.

And we moved our fish friends in, and they seem very happy.

Sebastian's new diagnosis is a rare autoimmune syndrome. Another rare syndrome. Unrelated to the first, but possibly his existing issues made him susceptible. I'm starting to hate the word "rare". It just means not many people know how to help my beautiful child. Who really, really doesn't deserve any of this. And it seems cruel.

They say that water has healing powers. It is an elemental force - one that I feel deep in my bones. Every morning, I go and sit by the pond. I drink my coffee and watch the light dance across the water. And I think about how much Rick wanted a koi pond, and how one day, 9 koi fish appeared in a whiskey barrel. And how that caused us to create this place, even when everything else in our lives was chaos.

I think about how digging a huge hole in the yard and filling it with water can soothe your soul in troubled times. And I find a lot of hope in the idea that sometimes you really, really want something but you don't know how to get it, and then you wake up one day to discover that the universe has gifted it to you."


Editorial Note: If you wish to contribute your own Covid diary please email [email protected]


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