Pam’s Papers – SOFT Lights the Way; 2013

 SOFT Lights the Way; 2013 Conference

by Pam Healey

Lighthouses, iconic coastal buildings, come in different sizes, shapes, colors and patterns and have steady beams or unique flash patterns. The stately lighthouse with the keeper’s cottage, fuel storage building and foghorn house, together, constitute the light station. Earlier, there were some lightships, anchored with tall masts with a beacon atop, in areas not conducive to a permanent facility. Light- houses stand guard on islands, hilltops, dunes, cliffs and at the end of peninsulas jutting into ocean bays and sounds and into lakes. Some are on little more than a rocky island framing the round or square base. Light-houses are cylindrical or upside down cone-shaped, round, square or octagonal towers or stubby spark plugs. Others are skeletal iron frames. They stand alone or are attached to houses. A few top buildings. Lighthouse exteriors were first rubble or wooden, soon were brick, stone, iron, steel and even cement made partially of shells. Boston Light’s over two hundred year old walls are seven feet thick at the base.

The towers are punctuated by windows to light the steep spiral staircase once climbed by the keeper several times a day to tend the lantern and look out to sea. Some original lighthouses have been storm toppled and replaced; others have been moved or rebuilt farther inland when coasts eroded.  Today, many have been taken from service, but some have been brought back in use by historical societies. Only one in the country still has a keeper. All lighthouses are picturesque features of the coastal landscape, reminders of earlier times and challenges, which stimulate the imagination today and invite photography. We must remember that each lighthouse announces: This is where you are. Think about where you need to be to reach your destination. Decide the route you will take. Stay safe.  Lighthouses have two purposes. They direct mariners to harbors by orienting them to what would otherwise be a coast without distinguishing features. They also warn ships away from dangerous rocks, shoals and islands. They made life safer for those on seas and large lakes by aiding navigation in the days before high tech instruments, when captains looked to the coast to know where they were.

By day the lighthouse’s unique shape and color pattern helps sailors orient themselves to an unfamiliar and seemingly uniform shoreline. These are called daymarks. At night the lanterns send sweeping beams or signature flashes to warn sailors away from treacherous areas. With the invention of the Fresnel lens in 1822, the light could be intensified and refracted by the multiple cut glass prisms, carrying a strong beam miles farther out to sea. The speed of revolution of the lantern and the number of flash panels and light colors create patterns of light and dark, enabling many different flashes or characteristics. There is a different signal for each lighthouse, which allowed a mariner to identify the lighthouse by its signature flash and determine his exact location. Lights have specific range, sequences of flashes, colors of flashes and time between flashes. Fl 10s means flashes white every 10 seconds; Fl G 5s means flashes green every 5 seconds; WR 8s, means flashes white, red every 8 seconds; VQ (3) 5s means 3 very quick flashes of white every 5 seconds; Occ means steady light briefly darkened. Some have specific multiple flashes; not far from Boston Harbor stands Minots Ledge Light, whose 1-4-3 flash says, “I Love You.” Lighthouses have served to keep travelers on course and safe.

Lighthouses are now run automatically, but they once required light keepers to trim the lamps and maintain first the  whale  oil  supply, sometimes  lard,  then  kerosene.   Eventually electricity ran the light. Some now have LED lights run by solar panels. The keeper made sure the fuel was supplied or electricity flowing and the bulbs working. They kept the windows and lens prisms clean to maximize the beam. Light keepers kept a daily journal of weather and sea conditions, fuel consumed and other notations.

Being a lightkeeper was not without its challenges.  Work  was  strenuous,  often  dangerous,  and  conditions could  quickly  become deadly.  There  were  more  than eighty women lightkeepers,  each inheriting the job when her husband died or was injured, many on the job. Entire families were wiped out by severe storms.  Trips to the mainland from island lighthouseswere  dangerous, and the round trip journey was not always completed, especially during evacuations. When the deadly hurricane of  ’38  hit  RhodeIsland, the Beavertail light keeper’s children were in school a few miles away. The bus carrying them home crossed by Mackerel Cove, and a wave breached the narrow area between beach and marsh, toppling  the  bus.  The  young  daughter  was  drowned.  Her brother survived.

The oldest lighthouse, the Pharos of Alexandria, was also the tallest, about 45 stories tall. It stood for 1500 years, destroyed by an earthquake. Our oldest, Sandy Hook, NJ, is 248 years old, the earlier Boston Light having been blown up by the British and replaced after the war. Only Boston Light still has a keeper, a Coastguardsman. The first lighthouse to use electricity was the Statue of Liberty. Thirty-one states have lighthouses, including all six New England states. Michigan has the most; Maine is second. Rhode Island has 21 light- houses, 13 of them active.

Lighthouses stand straight and tall. They weather all conditions. They help everyone who needs their help and heeds the signal. They bring light to the darkest night and most dangerous storms. They direct and protect. They endure. They also draw attention to themselves and expect others to note their presence. They know there may be no second chances for those who miss their beams. Lighthouse keepers endured isolation, worked uncomplainingly with tedious routine that must be completed. They were often called upon to act coura- geously. They were prepared for the unexpected and knew a turn in the weather can be deadly. Many were witness to tragedies when ships were wrecked and lives lost. Lighthouse keepers worked for little pay and long hours. They accepted hardship and rose to challenges. Undoubtedly, they found beauty in the sea and sky, in shore birds and sea life, in changing weather and peaceful solitude. Perhaps, they found some nobility of purpose, for many held the position for decades.

SOFT has been a beacon of light for families with children with trisomy for three decades. The conferences have created a light station for 27 years. Those who have learned to care for their children and live with uncertainty educated others who came behind them. They shared information about willing, knowledgeable physicians, special diets, valuable medical procedures, useful therapies, and helpful equipment. They insisted on medical interventions traditionally denied babies with what was seen as having a minimal chance of survival. They discovered stimulating toys and activities and estab lished educational initiatives. These parents have been the beams lighting the way for others. Siblings spoke of the blessings their brother or sister has been. They encouraged parents to not worry that their child with disabilities would mean a younger sibling’s life would be compromised. They too have been the beams. Each year families attend the conference clinics and provide invaluable opportunity to physicians who would  have  limited  contact  with  long-time  survivors  with trisomy. Their beam announces possibility. Across the country parents address medical students, so they learn that children do survive, develop and become important members of their families. They learn what parents will expect from them. They learn to see a child, not just a diagnosis. They will become part of that safe harbor.

When a family gets a prenatal diagnosis or a diagnosis soon after birth and contacts a chapter chair or Barb, they find they are not alone. They are given information to guide them in their decision-making and encouragement that sup- ports them at an emotional time. Those who have been where they are and understand will help them get their bearings. The conversations, the family packet and the newsletters will orient them to where they are and where they need to go. SOFT members help them make informed decisions.

Today, there are technical navigation tools readily available, but once it was a family telephone and mailbox, a short newsletter from a kitchen table in Utah and a few member families. We know that as a young mother with a child with what had been a previously unknown diagnosis, Kris considered there were other families “Somewhere out there.”  Like a beam scanning the open water, she found others, and they found her.  SOFT families, joining one by one, became that safe harbor. Through the new support group she founded with John Carey, she directed them into a safe harbor, so they could learn together and find strength in numbers.

SOFT Lights the Way by presenting possibilities. SOFT Lights the Way by changing language, which then changes expectations.
SOFT Lights the Way by keeping a surgery database. SOFT Lights the Way when members work to effect legislation. SOFT Lights the Way when they address problems with DNR orders, increase palliative care initiatives and define treatment pathways that change acceptable protocols. SOFT Lights the Way when parents releasing a balloon stand side by side with rainbow children and their parents, letting them know it is possible to survive. SOFT Lights the Way when parents gather in lobbies, friend each other on Facebook, email each other, create slide shows and on-line family stories.

Beavertail Lighthouse is the symbol for the SOFT Conference. Beavertail Light is a gray, square cylindrical granite tower in Jamestown on the tip of Conanicut Island at the southern end of Narragansett Bay. It warns of a deadly rocky coast and orients ships to Narragansett Bay’s West Passage. On this site was erected in 1749 the third light house in America. It was wooden and financed by fees paid by boat owners. Earlier, there was a watch house in 1705 and a lighted beacon in 1712, and in 1719 a gun shot used in fog. The current structure was built in 1856, along with the keeper’s house. The assistant keeper’s house added later is now a museum. The current lighthouse has a rotating light which gives a white flash every six seconds. It is about fifty yards from the original octagonal light house, whose base remains. Restoration of the original base began in 2012 and saved the artifact from destruction by Hurricane Sandy. Work continuing in the spring of 2013 will result in an accessible cap with a compass rose insignia and a protective railing. Beavertail Lighthouse will remind us that SOFT has been a beacon for thousands of families for three decades and helps them find their way through storms and uncertainty to safe harbors.