The Butterfly Benefit

Epidermolysis Bullosa (EB) is a genetic skin condition in which the proteins of the skin are reduced, formed incorrectly or missing entirely. This results in blistering and wounds for those born with it. Depending on how severe the case is, it can be debilitating and even fatal. The children are "butterfly children" because their skin is as fragile as a butterfly's wings

Leslie Rader is a volunteer for DebRA of America (www.debra.org) and runs the New Family Advocate program that helps families who have a child with EB. Leslie and her husband Bryan got involved in EB after their second daughter, Lauren, was born with a fatal version of the disorder.

Today was the annual fundraiser Leslie has in Louisville Kentucky. Held at the Olmstead, the event included a silent auction, a fashion show, a quilt raffle and a nice lunch. The day was beautiful and the event was a huge success with over 200 people in attendance.

What a wonderful way to spend an afternoon.

Accidents

On Tuesday night just after 7pm, my daughter called me, upset. She and her 4 friends were traveling on a local road when the driver went off the road and hit an electrical pole, snapping it. The pole fell onto the truck they were traveling in, but the connected wires arrested its fall.

I asked my daughter if she had called 911, while rushing my son to the SUV. She said they had and began to cry. I urged her to listen to me, that I would be right there. The crash site was about 2 miles away.

I was halfway there when the medic called to say Liz was on a long board and did I consent to transport? I asked if he could await my arrival, that I was only moments away.

2 miles has never been so long.

John saw the lights. "There it is Mommy."

I had him stay in the car and went to find my daughter. I could see the fallen pole straining on the cables, but could not see the pickup. For this I am grateful.

Three of the teenagers were sitting on the back bumper of the ambulance, and a police officer was standing with one of the medics. I interrupted their conversation to ask for Liz, telling them she was not one of the girls sitting at the back of the ambulance.

They advised me she was inside the squad, and as they opened the door, I caught sight of my baby strapped to a long board and wearing a C-collar, blood caked in her hair. Her friend stood at her head, in her line of vision, his nose bleeding.

Liz was awake, and I asked her to do everything the medics told her to, and that I would meet her at the hospital.

Her friend came down off the ambulance and hugged me as he broke down.

"I am so sorry," he told me.

I hugged him tight and told him he needn't apologize- they were all alive and that was all that mattered.

I dropped John with a friend and another drove me to the emergency room, stopping on the way to pick up my daughter's good friend- I knew in the instant information age she would think the worst if she couldn't see Liz.

It was a long night in the ER. Head and neck X-rays, a CT- it was hard to explain to these teenagers that not being the first one treated in an ER was a good thing, that it meant they were stable and could wait.

The five of them were in pain. None had been wearing a seatbelt. One boy had some abrasions running down his arm, both he and Liz were missing shoes...

It was after midnight when we were discharged. Liz had dizziness from the concussion, neck pain that was likely whiplash, a lump on her head, and small cuts at her hairline.

It could have been much worse.

But I feel old.

FDNY

In honor of my friend Abby chatting up a hot fire fighter in Brooklyn today, I have decided to discuss New York's Bravest.

I never understood firefighters. The whole running into burning buildings to save people you don't know... I don't get it... Having been in a fire as child, I have a tremendous, perhaps irrational fear of fire... so I have tremendous respect for these men (and women)...but I would never date a firefighter. The fear is ingrained in me.

I worked as a temp at Metro Tech- did medical referrals for firefighters, chaperoning exams, doing PPDs and vaccines and such. And in 2000, I oversaw the urine drug screening at the firefighter test. In the six months I worked there, my admiration for these brave men grew. They were still little boys- there were no female firefighters working the test- and they were kind and chivalry was alive and well...

These men worked hard, played hard, and were one big family. They teased one another, told fascinating, terrifying stories, and made me grateful every day that there were brave men willing to do this job- and love it.

Larry, Tom, and Walter were in charge and oversaw the FDNY side of the test. Walter and I shared a love of the same author, and Larry and Tom teased us... working with these men, glimpsing at that life, was a gift- to be one of them, sort of, was wonderful.

So on 9/11/01, I prayed for these men I met, and all their brothers. Over 300 were lost among the 3000 dead. The wall of the fallen at Metro Tech doubled in size in a single day.

Dennis, Michael, Ray... just a few of those lost but they were firemen I knew. From the neighborhood. They died doing a job they loved. When Michael's body was recovered, they found that his last act this side of the grave was to open his coat and wrap it around the woman he was leading out of the towers. How can anyone be that brave? That selfless?

Firefighters are that brave. And I am thankful every day.

Haiti and the Israeli Field Hospital

Yitshak Kreiss, M.D., M.H.A., M.P.A, was the commander of the Israeli Defense Force field hospital in Haiti. In ten days of operation, his team treated over 1100 patients. By the time they left, other facilities were up and running, able to take over.

Today I heard Mitchell Schwaber, M.D. describe the time they spent in Haiti after the earthquake on December 12 that killed over 200,000. 86 hours after the earthquake, the hospital was up and running. Each patient had an electronic medical record with their photo.

The Israelis were joined in their efforts by Canadian nurses and Columbian surgeons. They used Moroccan casting material and Haitian-made orthopedic screws. They preformed lab tests, x-rays, surgery and delivered babies. They had an ethics panel to make the hard choices necessary in a disaster

After surgery, doctors worked the phones to make miracles happen. Their patients were transferred for additional care to a US surgical ship and hospitals in Miami and New York. Patients that were well enough went home.

All the care was free. In Haiti, where poverty was overwhelming, individuals received amazing, life saving care, regardless of the ability to pay.

Dr. Kreiss, on the day they were leaving, told his team, “Hope is the antidote to the despair of disaster” These amazing men and women gave the people of Haiti hope.

I for one am grateful.

The kids

So I am sure everyone brags about their kids- it is natural, we all think our kids are the best on the planet. I, like many, wonder and worry about what the future holds for my two major contributions to this world of ours. What great things will they do?

This is my favorite Cub scout and youngest child- sporting a recently lost tooth as well as a cheesy smile. He gives the best hugs, does all of his chores and is a big hearted little man.

My teenager is kind and amazingly beautiful- it really is hard to believe I had a hand in creating this beauty. She is a girlie girl- so not me- and I was never that thin and shapely... ever.

My children can exhaust me, exasperate me, and drive me crazy at times (though some might argue I was crazy to begin with)- when the light sabers and clothes litter his floor and she has an assignment that still isn't done at 11pm.

All that matters not at all when I get my hug and kiss goodnight, or when a quiet child slips under my covers asking me to sing the song that brings sleep. Parenting is hard. But it is totally worth it.

Cub Scouts

As a Den leader to my second grade wolf den, I try to do projects with the boys and their parents that give them a sense of a job well done.

Last week, we made kites for our kite parade, which is scheduled for the 23rd. After looking at far too many choices of kites we could make, I found one that met my criteria- inexpensive supplies and ease of construction. We made garbage bag kites.

I will set aside for a moment that the young man in Home Depot didn't know what a dowel was. Each kite required 2 dowels, a garbage bag, masking tape and twine. So for less than $2 a child, I was able to get everything needed.

The plan was a bit more complicated than I originally thought and not every line was perfectly straight and I am sure a few angles were off a bit, but with me, 3 other moms, and one uncle, all five boys finished the basic kite before the meeting ended. They were told to decorate the kites before the 23rd, and we cleaned up the area.

One of my boys decided to test run his kite and IT FLEW!

It worked! We did our best and it worked...amazing!

Peace Corps Anniversary

On March 1st, 1961, President John F. Kennedy created the Peace Corps, and since then, thousands of volunteers from all across America have served in countries around the world.

I am honored to have served in Guatemala. I had always planned to serve. In Eight grade, my class was shown a video of volunteers working in different countries. One was a nurse serving in an African nation. I decided then and there that I would, as an adult, be a nurse in the Peace Corps and make a difference.

I think my parents believed I would outgrow the desire. Many of my friends thought I was crazy. And many asked me how I could believe that I could change the world.

These people were never volunteers.

I joined. I served. I taught. But I received so much more than I gave.

The children in my village showed me how to make a top from a bit of wood and how to make it spin. The mothers gave me sage advice about living in Guatemala. A male friend taught me to dance and patiently corrected my Spanish over and over again. I learned to slow down, I learned to appreciate that my way was not the only way. I washed in a large bucket, because I had no shower. I baked in a pot because I had no oven. I slept in a bug net- and it wasn't only because of mosquitoes...

Beans and rice were the staples in my diet. Lizards darted across the road and in time I stopped noticing them- they became routine. I fell in love with tamales- they are amazing. I walked everywhere. I loved walking down to the river, I remember the spring at the base of the mountain, hidden by trees, as one of the most beautiful places...

I learned you can sit three adults in a school bus seat. And that sometimes a chicken will peck your ankles. I lived in a house of cement block with a tin roof. My furniture was all hand made and basic.

I have thousands of memories, moments in time. Peace Corps is a tough job- being away from everyone and everything you know. But I loved it.

Happy Birthday, Peace Corps!

Rick has left the Country

My boyfriend Rick is in his late forties, and I love him dearly. He has traveled to Canada, taken cruises to Mexico and some of the Caribbean islands, which some would count as foreign travel, but really- not so much.

Granted, they are different countries, but foreign travel in my mind means you need a passport, maybe even a visa.

Rick got his very first passport last year...

I admit, I was on my mother's passport and traveled to Ireland in 1968 so yes, my travels started at a younger age, but I don't really count Ireland, as we stayed with family, and it is my mother's home.

I returned with my sister to Ireland in 1976- again staying with family. I returned on my own at 16- and this time traveled to London as well- my wanderlust was born.

With over a dozen countries under my belt, not to mention living in Guatemala in the early 90's, I consider myself a veteran of foreign travel. Rick is more of a novice.

I was not the only one who thought so. His mom gave him a bunch of suggestions for his safety too. In fact, when I was reciting my (very long) list of do's and don'ts, he said I sounded very like his mother. I was nagging, I freely admit it, and being the good man he is, he listened.

He wore a plastic watch instead of his nice one, took a hand-held digital camera instead of his "wedding photographer" camera with the 7 lenses, and he wore a plain blue jacket instead of his leather one.

He arrived safely in Southern China, and will be there till March 15. He skypped me (not sure that is really a word, but whatever) and told me how hot he was (in the 90s- no sympathy from me as I looked out on the snow) and that he brought the right camera for the trip.

I felt vindicated.