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Rach’s Hope: Weathering The Storm Of Critical Illness

When friends and relatives face crisis, tragedy and heartbreak, many of us offer help.

“If you need anything, just call,” we say. “We’re here for you.”

We mean it. But it’s not enough.

Alan and Lisa Doran lived through a nightmare last summer. Their daughter Rachel — a rising senior at Cornell University, National Merit Commended Scholar at Staples High School, talented Players costume designer, and founder of her own pajama company — developed a rare reaction to common medications.

She suffered severe burns to 95% of her body. She then developed another life-threatening syndrome. On August 17 — after 35 harrowing days — Rachel died.

Rachel Doran, after her Staples High School graduation.

Her parents made it through that awful time thanks to wonderful doctors, caring hospital staffs, and many supportive friends.

And those friends helped by not simply saying, “just call.” On their own, they figured out what Alan, Lisa and their younger daughter Ellie needed. Then — without burdening the family — they acted swiftly, decisively and efficiently to make it happen.

When Rachel was in Columbia Presbyterian Hospital, for example, a woman found a boutique hotel 2 blocks away.

She booked it. Lisa never wanted to leave Rachel’s bedside. But with a place to sleep — and shower — she was able to take care of herself, as well as her daughter.

Another friend showed up every morning with healthy muffins and a protein shake.

“People caring for loved ones eat junk — if they eat at all,” Lisa says. “Having that food, every day, was so important. I could never have done that on my own.”

Countless gestures like that sustained the Dorans during the most horrific time of their lives.

Rachel Doran (right) and her sister Ellie.

But how many people have friends with the resources to book a hotel room, or bring fresh food to the hospital every day?

Alan says his family’s experience at Bridgeport Hospital and Columbia Presbyterian opened their eyes to the reality that during a critical illness, most people are on their own.

The New York facility, for example, draws patients from all over the world. Families — if they can get there — have no support network nearby. Countless other obstacles — finances, language, you name it — conspire to make a medical emergency even more daunting than it already is.

Alan and Lisa know how fortunate they are. They could take time off work to devote all their time and energy to Rachel. They had “incredible care” at 2 hospitals. And they had the communication skills to talk clearly and often with those superb doctors and nurses.

They realize — despite the tragic ending — how lucky they were, in those respects.

Rachel and her boyfriend Rob traveled to Cuba during spring break. This is his favorite photo of her.

After Rachel died, the Dorans were devastated. But they wanted to find some sense in a senseless situation.

So — keeping their daughter’s spirit, beauty, kindness, style and wit alive — they’ve created Rach’s Hope.

The mission is to help others weather the storm of critical illness. “We want people to have a team like we and Rachel had,” Lisa says.

The foundation’s name has special meaning. “Hope” was Rachel’s middle name. The Dorans always had hope that she would recover. Her boyfriend said hope got him through every day. Today, the word “Hope” is tattooed — in her handwriting — across his chest.

And, Alan says, “we know Rachel would hope that no family goes through what we did. But if they do, she’d hope they’d have the resources that we did.”

Rachel’s Hope will make a concrete difference. For example, it will partner with hotels, and negotiate VRBO home rental rates.

It will also provide for items like housing, transportation to and from the hospital and outpatient appointments, access to mental health professionals, therapies not covered by insurance, meals (including gift cards to Uber Eats and Seamless), childcare and respite care during and after ICU stays, advocates to assist with hospital bills and health insurance communication, therapy dog visits, and funding for wellness expenses.

The Dorans are taking all that they’ve learned, and paying it forward — figuratively and literally — to other families.

A kickoff fundraiser is set for Saturday, March 2 (7:30 p.m., Penfield Pavilion, Fairfield). The date has special meaning: It’s the day after what would have been Rachel’s 22nd birthday.

“Rachel always told me that instead of a wedding, she’d have a big party at the beach,” Lisa says. “She wanted Bodega Bites catering, and Tito’s vodka bar. They’ll be there, and it’s on the water. We’re having the wedding she hoped to have.”

Her family and friends will share stories. But you don’t have to know and love Rachel to attend. Everyone is welcome. There’s live music, and huge live and silent auctions.

As for the dress code: When Rachel was 11, she started Rachel’s Rags. The company made intricate cotton and fleece pajamas. She sold them at stores and craft fairs, and on Etsy.

Rachel loved “pajama chic.” So attendees should wear pajama bottoms, and a chic top.

There’s one more thing: The day before the fundraiser — on March 1, Rachel’s birthday — Rach’s Hope is starting a “Cozy Across Campus” social media campaign. The idea is for students everywhere to go to class in pajama bottoms.

The attire will draw attention to the importance of comforting people in need — and offering hope.

Rach’s hope.

(Click here for more information and tickets to Rach’s Hope March 2 fundraiser. Can’t go? No problem — click here to sign in or register to bid online for the silent auction. And click here to donate any amount.)

 

 

 

 

 

 

 

 

 

[OPINION]: Middle School Waves Must Become Gentle Swells

Last fall, Coleytown Middle School was closed due to mold. Those 6th and 7th graders were moved to Bedford Middle School, and 8th graders to Staples High, for the remainder of the school year.

In December the Board of Education endorsed a plan for all 6th grade students to be educated in Westport’s elementary schools, starting with the 2019-20 academic year. The plan included placing 14 modular classrooms at those 5 elementary schools. To implement this “K-6 plan,” the BOE requested $4 million from the town.

On February 7 the Board of Finance voted 7-0 to authorize $1 million, to place 6 temporary modular classrooms at Bedford Middle School. All Westport 6th to 8th grade students would be educated there, on an interim basis  (the “6-8 plan”).  The following night, the Representative Town Meeting voted 28-3 to confirm the Board of Finance’s $1 million appropriation recommendation.

In the wake of the RTM vote, the Board of Ed sent a letter to all Westport families. They pledged to move forward, reiterating their commitment to  “continuing to deliver the high quality education that our students and community deserve.”

The Board of Ed thanked “the many community members who participated in this process for their engagement and insights, and to the members of the funding bodies and boards for their time and diligence. We could not have done this without our superintendent, school administrators, teachers and staff who will continue to deliver the superb academic programs that are a hallmark of Westport schools.”

Some residents favored the K-6 plan. Others supported the 6-8 plan. Some issues remain unresolved, such as whether Coleytown Middle School can be reopened, and if so when. Passions are high on all sides.

“06880” reader Gery Grove writes:

I grew up in Washington, D.C., surrounded by politics. Yet in my 6 years in Westport, which began when my oldest daughter was ready to enter kindergarten, I did not take much time to follow our local political process. As for so many, this changed drastically when our schools faced a crisis.

Accidentally and very hesitantly, I became many people’s “poster girl for K-6.” Make no mistake: I never wanted anything for my 5th grade daughter other than for her to move to Coleytown Middle School. She was excited to say goodbye to elementary school and spread her wings; to try new classes and be in the school play. Like any parent observing the changes in their oldest child, I wanted that just as much as anyone here in this town did. And then the school closed.

Coleytown Middle School is closed due to mold.

My support of the 6th grade staying in the elementary school has been in lockstep with the Board of Ed’s suggestion that it is the emotionally safest place for them to be in a crisis. I am a pediatric RN who has worked in this town, and in many schools with many children and families. If your child is 7 now, there is a chance I gave him or her their earliest vaccinations. I have been looking out for them and seeking to do no harm since I arrived here.

The ages of 10-14 are some of the most sacred and precarious ages. I believe kids need a protected experience during that time to properly learn and flourish. Yes, they need independence, but in a safe and nurturing learning space.

From my personal point of view, this gigantic school we just created for them will struggle to do that.  The mission of the parents going into that school must find ways to support those who will surely need it. “Kids are resilient” was stated over and over again by members of our town funding bodies. Indeed, some kids are resilient. And some struggle to kick to the surface.

The political process that unfurled in front of all of us, and much of the behind- the-scenes posturing and tribalism, has made us “a town divided.” In any crisis where 2 paths unfold and you don’t know which leads you to the greatest peril, there will be a difference of opinion.

But respect for each side’s point of view helps people navigate that path together. Heartbreakingly for many of us, that is not what happened here. How in the world did people allow the future of their neighbors’ and friends’ children to become an opportunity for brinksmanship? And how in the world did members of our funding bodies allow themselves to fall into the trap of choosing sides?

Modular classrooms will be placed at Bedford Middle School next school year. All Westport 6th through 8th graders will attend the school.

I received a respectful and thoughtful call from a member of the RTM in a neighboring district this weekend. She took time to explain the votes of the funding bodies to me in incredible detail, including the way precedent had been set here in town, and how the 4-3 BOE vote set the wheels of doubt in motion.

I explained to her that if the members of the BOF had taken the time to present their position differently – not about what is best for anyone else’s 6th grade child as so many did, but what is operationally most feasible for the town to execute, and the most sensible way to allocate funds – then surely the pitchforks would have been lowered.

We all liked a 6th grade academy. But when a rational argument was placed before us about why it was not feasible, we swallowed the bitter pill that our options were reduced yet again.

Now many of us have to enter this school.  We are concerned for our kids. We feel like it is an experiment with a very uncertain outcome. We are wary of the way this has come together and what culture it will create for them, on top of the stresses of middle school.

There is a rough undercurrent created when people in town, including elected officials, look at this experience as having winners and losers. In the end, the only people who stand to lose out with that idea are the children. I hope that between now and August, the administration, the BOE and the funding bodies can work together to make sure that school is emotionally and socially safe for the children inside it.

There is still work to do. Like so many, I can only hope that the waves that have been made during this school year can reduce themselves to the gentle swells of everyday life again.

Let us learn from our mistakes as a community, as we decide what to do next with Coleytown Middle School.

Leslye Headland’s “Russian Doll”

Since debuting on February 1, “Russian Doll” — the Netflix comedy series about a woman who keeps dying in a time glitch — has snagged praise from critics, and plenty of viewers.

Rotten Tomatoes gave it a 100% approval rating. The Gothamist said it’s “the first must-see new TV show of the year.” New York Times TV critic James Poniewozik called it “lean and snappily paced; it even managed the rare feat, in the era of streaming-TV bloat, of making me wish for a bit more.”

Leslye Headland, with a montage from “Russian Dolls.” (Image courtesy of The Ringer)

The show’s co-creator, director and writer — Leslye Headland — is a 1999 Staples High School graduate. She’s earned kudos as a playwright, screenwriter and director, with hits like the play and film “Bachelorette” and the movie “Sleeping With Other People.”

Leslye’s been on a media tour following “Russian Doll”‘s debut. She was interviewed today on WNYC (click here to listen), and has appeared in plenty of print and online media too. Click here for one of the most in-depth pieces.

Intrigued? Click below for the trailer:

Pic Of The Day #636

Kids on the beach wall (Photo/Lynn Untermeyer Miller)

Photo Challenge #210

Once upon a time, kids rode bikes all over town. They rode them to the beach, the library, downtown — you name it.

And you did name it. Those were some of the guesses for last week’s 2-part Photo Challenge.

All were wrong.

The top image (click here to see) was taken at Staples High School. I thought that was a slam-dunk — if not for the rack itself, then the parking lot behind it. But I guess except for the one kid who rode his back to school, no one ever notices it at the bottom of the upper lot, behind the cafeteria.

The second photo was a lot tougher. The only reason I know where that rack is, is because a few days before Christmas I had to park waaaaay behind Barnes & Noble, and walk around to the front. The bike rack — which I’d never noticed before — is at the far of the entrance.

Riding your bike to Staples may be a novel idea these days. Riding to Barnes & Noble is a death wish.

It took several hours for the first correct response. Brandon Malin — a Staples sophomore — nailed the high school photo. It was his friend’s bike, he said.

So now it’s on to our first-ever 4-pack Photo Challenge.

Longtime Westporter Bobbi Liepolt’s father — photographer Bill Bell — shot the Dunbar furniture ad campaign throughout the 1950s and ’60s. He frequently used Westport settings.

Can you identify all 4 of these sites? Click “Comments” below!

(Hat tip: Werner Liepolt)

Photo Challenge #209

“06880” readers definitely look around.

And down.

I thought last week’s Photo Challenge — Jerry Kuyper’s image of dozens of raised orange dot things — would be one of the toughest ever.

Shows what I know. Within 15 minutes Kelley Douglass, David Sampson, Seth Schachter and Andrew Colabella all answered — correctly — that it’s the platform at the Westport train station.

Iain Bruce, Jonathan McClure and Martin Gitlin followed. (Click here for the photo.)

So I guess all those folks lining up every morning are doing more than just drinking coffee, reading the Times and listening to podcasts. They definitely know what’s happening all around.

This week’s Photo Challenge is our first-ever two-fer. Both show bicycle racks — an obvious (if increasingly) rare site in town.

(Photo/Mark Mathias)

(Photo/Dan Woog)

The image with one lonely bike is at a place you might expect. The totally empty rack is where not many folks would think of riding to.

Click “Comments” below if you know where one — or both — are. Double winners will get double the usual prize: Your name next Sunday on “06880.”

 

 

Melissa & Doug: Toys R Them

It’s holiday time. Frazzled parents and grandparents race around, corralling all the must-have latest toys and gadgets for every kid on their list.

They can’t find it all, of course. Thank god for Amazon.

But plenty of child gifts fly under the radar. Thank god for Melissa & Doug.

The Wilton-based, Westport-bred manufacturer of low-tech — but simple, colorful and very popular wooden toys — is swimming happily (and profitably) against the high-tech, highly disposable, plastic toy tide.

Melissa and Doug Bernstein

Parents around the world know and love Melissa & Doug toys. But the company — and its owners, Melissa and her Staples High School graduate husband Doug Bernstein — keeps a low profile. They don’t get much press.

Until now. Vox — the huge news and information website — just published a long, in-depth piece on Melissa & Doug (the business, and the human beings).

From start to finish, it sings the praises of the firm (and its owners).

For example, writer Chavie Lieber says:

In an era when children are bombarded with screens and all manners of tech, the company has maintained its spot in the crowded toy market despite the fact that — and perhaps because — the company’s toys have no electronic components to them. Melissa & Doug is set on making toys that are meant to be timeless, in an effort to preserve a cornerstone of childhood that the founders believe is under attack: open-ended play.

The piece explains why wooden toys are so important; how Melissa and Doug’s backgrounds (both are children of educators) inform their work; the importance of Amazon to their early 2000s growth; the role of open-ended play (particularly with simple toys) in child development; the negative effects of screens on kids, and the Bernsteins’ fight against too much technology.

It’s a fascinating piece. And it ends by noting that one of Melissa & Doug’s most popular toys of all time is a set of natural-finished hardwood blocks.

It is, Vox says, “perhaps the oldest toy in history. The company wouldn’t want it any other way.”

(Click here for the full Vox story. Hat tip: Ken Wirfel)

 

Remembering Bobo Romano

The name Richard Romano may not mean much to many people.

Some knew him as Richie. He was “Bobo” to others.

Most Westporters never heard his name at all. But for 20 years, he was a custodian at Staples High School. He cleaned the school. He helped keep it running.

And he loved it.

Richie “Bobo” Romano

Long after he retired, Bobo Romano was a fixture at Wrecker athletic events. He particularly liked football and basketball. He sat quietly, off to the side. But he was always there, no matter how bad the weather or how lopsided the score.

Karen DeFelice — a longtime Staples High School teacher, and former athlete at the school — remembers Bobo fondly. When she was a softball pitcher there, he arranged for her to work with John “Cannonball” Baker, a Westporter and legendary player, at Greens Farms School.

Bobo loved the University of Connecticut women’s basketball team, and the New York Mets and Jets. He was active in Westport PAL, and was a friend to the Westport Fire Department.

Later in life, he helped elderly friends with errands and companionship.

Bobo Romano died on Wednesday. He was 88 years old.

Respects can be paid Tuesday (December 11, 10 a.m. to 12 noon) at the Harding Funeral Home. A funeral service follows, with interment with full military honors. Bobo was a US Army veteran.

Click here to leave condolences. Contributions in Bobo’s name may be made to Westport PAL, 260 Compo Road South, Westport, CT 06880 (or click here).

Westport Wash & Wax: A Clean Upgrade

If you’ve noticed a large number of dirty cars in Westport lately: Don’t worry.

Westport Wash & Wax is open again.

Our town’s favorite car wash — okay, our only one, but it still rocks the universe — shut down for 11 days recently. It was the first time since they opened, in 1999.

The reason: upgrades.

“Just like with a car, at some point you need new things,” owner Scott Tiefenthaler — a longtime community benefactor — says.

“This is a 365-day-a-year business. But for this overhaul, we had to close completely.”

Lookin’ good, inside Westport Wash & Wax.

Electric components have been replaced by a hydraulic drive. State-of-the-art components move Westport Wash & Wax “far beyond everyone else in Fairfield County,” Scott says.

The modernization may not be visible to customers, as they wait for their cars to come out clean.

But, Scott says, “Our machine has always done the bulk of the work. This allows it to do even more. Now our guys can pay even more attention to the details.”

He and his crew are happy to see customers again.

And — just in time for the holidays — we’re happy to see fewer dirty cars on the road.

Committee Offers 3 Options For Coleytown

The future of Coleytown Middle School became a bit clearer this morning.

The school was closed in September, due to mold. Since then, 6th and 7th graders have attended Bedford Middle School; 8th graders are at Staples High.

Meeting today, the Community Advisory Committee whittled 9 options for the future down to 3.

The CAC sent these recommendations to the Board of Education tonight (7:30 p.m., Staples High School cafeteria):

  • All elementary schools become K-6, with the addition of flex space and/or portables, until CMS is reopened or new space is found. All 7th and 8th graders attend Bedford Middle School.
  • Find a rental location to house the 6th graders, and keep all elementary schools K-5. All 7th and 8th graders attend Bedford Middle School.
  • Find a rental location to house Coleytown Middle School.

One more parent feedback session is set for this Thursday (December 6, 7:30 p.m., location to be determined).

Coleytown Middle School is currently closed.

Meanwhile, here are links to documents posted online by the Westport school district today: