Thursday, May 22, 2014

Ishy's story, part 3 - the money

So with Dr. Kirschner and Cindi Gremling and Hazel's House of Hope on board, and final approval from Nationwide Children's Hospital expected at the end of January, all that was left was to find the funds to pay to get Annelta and Ishy to Columbus. Oh, and that U.S. visa issue.

At the end of November Elaine approached Dr. Jacqueline Bird, her contact from the World Pediatric Project (WPP) in St. Lucia and incidentally Ishy's primary physician, about funding for travel. She in turn suggested she contact Pawasol pour ti Mamai (Children's Umbrella Group*). At almost the same time a member of an informal Monday night get-together group introduced Elaine to Jane DuBoulay, the president of Pawasol. After a flurry of emails, on December 3 Elaine received notice that Pawasol would in fact fund the travel expenses for Annelta and Ishmael.

There are several things that are mind-blowingly amazing about this: Pawasol as an organization that usually funds direct assistance only - be it medical care or assistance after a disaster like a hurricane. Only rarely do they fund support for care like travel. This was one of those rare occasions. Not only did they provide money for travel to the U.S., they also paid for Annelta's travel to Barbados to re-apply for visas. And when the cost of airfare went up, they actually gave more.

And maybe the most amazing thing: All of this came together in 12 days! Elaine was first introduced to Dr. Kirschner by email by Dr. Helen Sharp on Friday, November 22nd. Elaine's sister Amy talked to her son-in-law's sister Kendra on Thanksgiving Day, November 28. Kendra in turn talked to Cindi Gremling, who instantly said "yes" that same day. On Tuesday, December 3, Elaine got the good news from Pawasol. Twelve days.

There were still many incidental expenses that needed to be covered. Unless Ishy's surgery were scheduled for summer, both of them were going to need warm clothes and there needed to be some money for incidentals such as cell phone calls while Annelta and Ishmael were in the U.S. So the Western Michigan University chapter of the National Student Speech-Language Hearing Association (NSSLHA) did a Scoops for Smiles fundraiser at a local, e.g., Kalamazoo, Michigan, ice cream shop. They raised $350 selling ice cream sundaes. Annelta, Elaine and a friend (physiotherapist who worked with Elaine at the CDGC) we call "Other Elaine" went to flea market and sold breakfast wraps and baked goods. The woman who runs the flea market donated her income for the day. Members of Annelta's church raised money. The families at Ishy's pre-school, one of the poorest in St. Lucia, raised money. The Child Development and Guidance Center (CDGC) acted as a fiduciary and held the donated funds until needed. Friends of ours, guests at Ola Lola's who heard Ishy's story when Elaine was home in December gave money to help. Helen Sharp, when she learned Annelta and Ishy were going to have an 18-hour layover in Miami airport, paid for a hotel room for them so they wouldn't have to just hang out in the airport. When something was needed, somehow it was there. 

The two remaining cliff-hangers were the hospital's final approval and the visa. The hospital committee approved Ishy's case on January 31 and soon after scheduled the date: Ishy's surgery would be on April 30. 

With all the ducks - the surgeon, the hospital, Hazel's House, the money - in a row, on March 14 Annelta went to Barbados to face U.S. Immigration. 

For days beforehand Elaine prepped her for that meeting. They went over every document, made sure every "i" was dotted and "t" crossed. Then came the big question. "What are you going to say when they ask why you lied the last time?"

All the color drained from Annelta's face. "You're going to tell them the truth," Elaine said. "You're going to tell them you wanted to so badly to get your son to the U.S. for surgery that yes, you lied to try to get him there."

When Annelta got to Barbados the Immigration people grilled her. They kept her longer than anyone else. They sent different people in to ask her the same question a different way to see if she would trip up. She didn't. She came home to St. Lucia with visas for her and Ishy. They were limited - three  months where six is usual and only one entry and exit. But they had visas and it was enough.

They were going to Columbus, Ohio, and Ishy was finally going to have the surgery.

* Pawasol por ti Mamai, or Children's Umbrella Group, originally started as a new Millenium idea by Jane DuBoulay to bring all the childrens' organizations in St. Lucia together in raising funds instead of each group trying on their own. Several meetings were held with these groups and with an initial donation of $5,000 from Courts as seed money, plans to hold a major telethon were discussed. For various reasons, these efforts never came to fruition and the groups dispersed. Undeterred, Mrs. DuBoulay persisted and in September 2007, Pawasol pour ti Mamai was registered as a Charity to provide assistance to needy children, be they sick, handicapped, in need of medication, basic necessities, or just unable to attend school because of lack of funds.
They raise money by selling at Flea Markets, organizing Tombolas, lunch functions, Quiz nights, sponsored walks and printing and selling a Cookbook, Calendar and Greeting Cards and have, up to the end of 2013, raised and disbursed over EC$450,000 to children requiring heart, kidney and eye surgery, eyecare, special needs programmes, medications, school fees, school books, school uniforms, school transportation, food, diapers and Child Development care. Help in the form of household goods, food and water was given to the Fond St. Jacques and Bexon communities in the aftermath of Hurricane Thomas and extra help was given to two homeless families to provide them with shelter and the necessities of life.
The childrens' needs are made known to Pawasol, not only directly by the people involved, but also by various organizations, such as the St. Lucia Blind Welfare Association, Dunnottar School (special education school), the National Council for Persons with Disabilities, the Child Development and Guidance Centre, the Headmasters and Mistresses of schools, CARE, and many more.
Any help that is given is always gratefully received and appreciated and spent 100% on the children.

Wednesday, May 21, 2014

Connections - Ishy's story, part 2

With all the obstacles - money, doctors, facilities, travel, visas - many people thought this quest was impossible. Elaine is a bit like the U.S. Marines: "The difficult we do right away. The impossible takes a little longer." "Can't" just isn't in her vocabulary. It's a challenge.

In November, Elaine traveled from St. Lucia to Chicago for the yearly national convention of the American Speech-Language-Hearing Association (ASHA). There she met with Dr. Helen Sharp, a friend and colleague from her days teaching at Western Michigan University. Helen is the president of the Michigan State Cleft Palate Association (she is also now president of the national organization)
 Dr. Helen Sharp with Annelta in Hazel's House of Hope

Elaine described Ishy and Annelta's situation to Helen. Helen called her good friend, Dr. Richard Kirschner, who just happens to be one of the best cleft-palate surgeons in the world, at Nationwide Children's Hospital in Columbus, Ohio. "Yeah, I think we can do that," was his immediate response.
He needed approval from the hospital's international relations committee. No problem, would take some time (January approval at the earliest) and they require that patients have a local (i.e., Columbus, Ohio) host family.

On Thanksgiving Day Elaine (now back in St. Lucia) called her sister in northern Ohio to wish her happy Thanksgiving and oh, by the way, you belong to that huge church - can you ask if anyone has contacts in Columbus that could be a host family. Her sister, Amy, said, "sure we can ask. But we're going to our daughter Shawna's for dinner and her husband's sister (I told you this was about connections) goes to Columbus all the time. Maybe she knows someone."

So at Thanksgiving dinner, Amy told Ishy's story to Kendra (the son-in-law's sister). Kendra said, "I know just the person." Kendra picked up the phone - on Thanksgiving Day - and called Cindi Gremling in Columbus. Cindi immediately said, "Yes! No problem" (That's Cindi's MO, her SOP - "Say yes and we'll figure it out later." She's a whole 'nother story.) It turned out that a four-year-old boy Cindi and her husband Dan adopted the previous year had cleft-palate surgery in the same hospital just a few months before. And, Cindi and Dan run Hazel's House of Hope, an organization that has lived-in houses in very poor, "bad," neighborhoods where the house residents reach out and provide food, shelter, encouragement, guidance, and help to anyone in the neighborhood.
 Cindi Gremling carries Ishy from Hazel's House of Hope

Within two hours of Elaine's call to Amy - did I mention it was Thanksgiving Day - the connections came through with a host family, no cost, and in a house a twelve-block straight shot away from the hospital with a family that had just gone through the same surgery.

Now all they needed was money.

Monday, May 19, 2014

Ishy's story, part 1

We're back home in Puerto Rico after an emotional trip to Ohio. It wasn't a rollercoaster trip this time. The highs just kept getting higher. Many MANY tears were shed - tears of joy, tears of wonder, tears of love, tears of gratitude. The only tears of sadness were the few shed as we said goodbye to Cindi, Annelta Pierre and Ishmael. We shared more hugs of joy, love, gratitude (and yes, a little sadness) as we said adios (for now) to our family in Michigan and Ohio.

But this - us home in Puerto Rico and Annelta and Ishy home in St. Lucia - is the end point of this part of the story. 

This story begins last fall in St. Lucia when Elaine first met Ishmael and his mother Annelta. Ishmael (aka "Ishy") was born three-and-a-half years ago with a cleft lip and alveolar ridge. In the States and most developed countries the surgery to correct this would have been done when Ishy was three or four months old. St. Lucia has no surgeon to perform this surgery, no hospital equipped for it.

 Ishy. Look at the smile in those eyes!

Ishy was actually born on the island of Martinique where Annelta was working as a security guard, making about $2,000 a year. Still, she managed to save nearly $4,000 to get Ishy to the United States where she was told he could get the surgery he needed. In Martinque she was given some very bad advice. She was told she could get the surgery from a particular U.S. doctor, but...she was told that when she went for travel visas to Barbados (the nearest U.S. consulate where anyone in the Caribbean must go if they wish to obtain a U.S. visa) she should tell them she was taking her son on vacation to the U.S. because there was "too much paperwork" involved if she said she was going for surgery for her son.

A single mom. Limited income. Limited savings. Vacation? Can you say, "red flag" to U.S. immigration? Visas denied. And for Annelta, the worst day of her life.

 Annelta (Ishy's mother), Adele (Ishy's one-year-old brother) and Ishy

There is an organization called World Pediatric Project (WPP) that provides surgery and medical help for children in the Caribbean with special medical needs. They help as many children as they can, but the number is limited every year and cases are triaged based on medical need. The problem was because Annelta tried to get help through different channels, she missed her window to apply to the WPP. By the time she could apply again - if WPP accepted Ishy - chances are he would be nearly six years old before the corrective surgery. And, by then he would have been in regular school.

People everywhere can be cruel to those who are different. People are no different in St Lucia. Just because of his looks, Ishy had already become a "marked child." That doesn't even take into consideration his physical difficulties with eating, drinking, speaking.

To all this add one more wrinkle: Annelta needed surgery herself that wiped out virtually all the money she'd saved for Ishy's surgery.

It is somewhere about here that Elaine enters the story as a speech-language pathologist working in the Child Guidance and Development Centre (CGDC) in St. Lucia. She began seeing Ishy as his speech therapist. 

 Ishy eating lunch at his preschool in St Lucia.

Although Ishy made great progress and became much more understandable with his speech, Elaine couldn't help but think there had to be a way to get surgery for Ishy. It is - as surgeries go - relatively common, relatively easy. And as disabilities go, easily fixed. We can make life in our world easier for a child with Down's Syndrome for example, or cerebral palsy, but we can't fix those. But, she reasoned, this could be "fixed," so Ishy would not even have a disability. 

Of course there were a few obstacles to overcome - a surgeon, a hospital, a location, travel, money and those pesky visas. So next up - connections.

Thursday, May 15, 2014

Did I say Monday?

Monday? Did I say the first installment of Ishy's story would come Monday? Yeah, Monday. But I have become very much an islander in my perception of time. I said Monday, I just didn't day which Monday.

The truth is this story is proving more difficult to write than I thought it would be. It's really pretty straight forward but it's also an emotional story for me. I keep letting myself get caught up in the emotion and I have to walk away from it. It is coming.

In the meantime a Wednesday Adventure will have to do.

For seven years we've heard about the waterfalls in San Sabastian. For seven years we've been saying we were going to find the waterfalls. Today we finally did.

There are two cascadas or saltos (both are words for "waterfalls" in Spanish) at Gozalandia. These falls are also sometimes known as Cataratas or El Roble or just the San Sabastian waterfalls; I have no idea where the name "Gozaladia" came from.

The lower falls are the most popular - they are closest to the parking area - but the stairway down is pretty steep and at the bottom the stairs give way to rocks for the last few feet. But there are stairs and handrails and the rocky part at the bottom has rope handholds.

The lower falls are a popular playground for families and the somewhat adventurous.

The upper falls are about a 10 minute walk upstream. There are two ways to get there: along the river bank, much of which is actually a series of alternate water courses. Along this route Gozalandia lives up to its reputation of slippery and muddy. The property owners have created new trails a bit off the riverbank that are much easier. These trails are interesting in their own right because of the flora along them.


The upper falls are not as popular but are well worth the walk. 

The pool is cold and deep, deep enough to be a safe landing area dropping from a rope swing:

Until a couple of years ago to get to the falls you had to park outside a gate and walk across private property. The property owners added a parking lot, restrooms and several other improvements like the trails. It is well worth the $5 parking fee.

After spending nearly three hours playing in the water, we were ready for lunch. The nice caballero at Gozalandia recommended a place on Carra. 111 between San Sebastian and Lares called Manhattan (although not surprisingly  he didn't pronounce it the way we would in English). Ice cold Medallas and great comida crillo - just what we needed!

Gozalandia is now on our list of must-go-to places when anyone visits. Really, it always was - we just didn't know it. We will go back a lot, both to the falls and to Manhattan. Come join us.

Sunday, May 11, 2014

Happy Mother's Day

(I wish I could take credit for the beautiful arrangement but actually it's from Amy and Miguel.)

(I do get a little credit for the Mothers' Day morning beach ride. As Kennedy would say "just a little bit.")

So many mothers in our thoughts today - Marti, Anne, Cathy, Kathy, Amy, Amy, Annie, Annie, Shawna - and those are just the ones we're close to!

And showing love and respect to all those women who for their own reasons have chosen to be childless. Good on ya!

Anyway, if you are a mother, if you want to be a mother, if you have a mother -

And if you're not a mother - we hope your Sunday was fabulous!

Saturday, May 10, 2014

The trip home

The travel fun didn't end when we got to Akron. Fortunately all the driving during the week - two trips to Columbus and a quick-turn day-and-a-half in Kalamazoo - went very smoothly, without incident.

Then came Wednesday and the departure for home. Up at 3:15 am to get to the airport by a little after 4:00 to catch a 6:00 am flight to Chicago and from there to San Juan. Except our 6:00 am flight on American was canceled. The American people were very good (especially considering it was 5:00 in the morning). They got us on a Delta flight also leaving at 6:00. But instead of a relatively leisurely two hours in Chicago, we now had 40 minutes to get from one terminal to another in Atlanta to catch our new flight to San Juan. We ran through the terminals and just made the tail end of the line already boarding. But we made it. The new flight put us on the ground in San Juan nearly two hours earlier than our original flight. Yay! Off to baggage claim.

As usual there was a cluster of people surrounding the first leg of the baggage carousel. Elaine said, "There's one of our bags." Only by the time the carousel came around, the bag wasn't there. Elaine said, "I think I saw somebody take our bag." We waited a bit, got our other bags but sure enough, our big bag wasn't there. So off to baggage services. Again, the counter agent was very nice. There was a bag similar to ours that hadn't been claimed. Ah ha! Someone grabbed the wrong bag. The agent scanned the tag, got a phone number, and called "Wendy."

"She's out front, waiting for her mother to pick her up," the agent told us. "I'll go find her."

So off he went with Wendy's bag trailing behind. About 10 minutes later he came back, still with Wendy's bag. "She wasn't there." Back on the telephone. "Ah! I know where she is." And so off again with Wendy's bag in tow. Fifteen minutes or so later, he came back, this time with our bag. "She was in the bar by the parking lot."

The luggage thing used up nearly an hour of our "extra" two hours, but it all ended well.

Oh, one more tiny glitch: we couldn't find our car rental reservation and we weren't absolutely positive which company had the reservation. A couple of quick phone calls resolved that and it was smooth sailing home from there.

One - okay, two - more quick digressions in this digression from the real story: for all our local friends who complain about the condition of the roads in Puerto Rico, you should drive in the Upper Midwest at the end of brutally hard winter. Ay dios mio!

Many mainlanders complain about how people drive in PR. For the most part  I'm okay with it. It is a different dialect to the language of driving that statesiders are used to, but that's all it is - a different dialect. However...after driving more than a thousand miles on expressways in Ohio and in Michigan last week among people who know how to drive on expressways, I was frustrated on the Autopista (one of the few true expressways on the island). Because people drive however they want in whatever lane they want - slow in the left, fast in the right - and because they don't move over for over-taking traffic, there is no flow to traffic. It's chunky, clunky. Up to highway speed then brake for a slow vehicle in the left lane. Then speed up then brake. There is just no flow. I figured out that is what's frustrating.

Tomorrow one more digression for Mother's Day then on to Ishy's story.

Thursday, May 08, 2014

A few words about travel


It's good to be back home, on "our" beach and warm! I spent 55 years in the Midwest; I know a little bit about winter and cold and the seasons. Northern Ohio and southern Michigan were COLD, really cold considering it's the first week of May. I had to break my winter coat out of storage at my sister-in-law's house. I could have managed without it except I gave my heavy sweatshirt to Annelta who is from St Lucia and who was even colder than I was.

 Before I get into the main story - the reason for our trip to the States at this time - I want to say a bit about the actual travel part of the trip.

From the get-go our travel could have been a disaster. We arrived at the San Juan airport without incident. Went to the US Airways kiosk and checked in. Took our tagged checked bag to the bag drop. Then we found out our flight was delayed two-and-a-half hours. Which meant we missed our connection in Charlotte, NC for Akron, OH, since our flight wouldn't leave San Juan until after our connecting flight left Charlotte. As we stood in a long line of fellow travelers, a woman ahead of us in line walked away from the counter announcing, "No more flights. We're all spending the night in San Juan." Not what we wanted to hear. Eighty-one miles from home and already we're stranded for the night.

Ah, but not so. When it was our turn at the counter, the counter agent, who was in the middle of trying to reroute several hundred passengers and had every right to be short-tempered and curt, was gracious and extremely helpful. When we told her about our already-checked bag, she immediately called down to the ramp, had someone find and pull our bag and then retag it with our new flight numbers.

When we got to the departure gate, we realized that on our newly rebooked flight, we weren't sitting together. We weren't even in the same boarding "zone." We decided to get on together anyway. The gate agent was another guy who had every excuse to be cranky since he had just loaded one plane as quickly as possible because another plane - ours - was waiting for the gate to unload and then reload with all the passengers booked for that flight and all the rebooked passengers like us. This agent noticed we were boarding together but with different seat assignments. He asked us, "Would you like to sit together?" Of course we would! So in the midst of all the chaos he worked - and I mean worked  - to find us seats together on a nearly full aircraft.

I'm sorry I didn't get the names of these two people. I would truly like to thank them by name. 

So we got to Charlotte and made our new, much later connecting flight. We landed in Akron-Canton just shy of midnight. Pick up our reserved rental car and "home" to bed.

Ah but not so. Because we were due in much earlier, and our reservation was for much earlier, when we didn't show up on the plane we were supposed to be on, the car hire people had no obligation to wait for us. So they didn't. When we got to the car hire desks, all of them were dark.

So we missed spending the night in San Juan. We avoided spending the night in Charlotte. Now we were going to have to spend the night in the Akron-Canton airport, 25 minutes from our destination,  because the car hire places were closed???? Give me a break!  And someone did.

We saw movement around the last rental desk. Hertz. It wasn't who our reservation was with but at quarter after twelve in the morning, who's going to be picky? We stopped him just as he headed for the exit door. Mike, the Hertz agent, came back, turned on the lights and rented us a car.

At least three different times the trip north could have turned ugly. Because of three people along the way, it didn't.

That was our trip north. Tomorrow - our trip home! Then on to Ismael and Annelta.