Sunday, May 25, 2008

Paying Tribute...

This Story ran in our local paper today. It is a strong reminder of all who have paid the ultimate price for the Freedom we all enjoy.

Being the Mother of a burn survivor,I can relate on some level to what this young Marine endured.

Please take a second tonight to say a prayer for all our soldiers and their families.

The young Marine came back from the war, with his toughest fight ahead of him.
Merlin German waged that battle in the quiet of a Texas hospital, far from the dusty road in Iraq where a bomb exploded, leaving him with burns over 97 percent of his body.
No one expected him to survive.
But for more than three years, he would not surrender. He endured more than 100 surgeries and procedures. He learned to live with pain, to stare at a stranger's face in the mirror. He learned to smile again, to joke, to make others laugh.
He became known as the “Miracle Man.”
But just when it seemed he would defy impossible odds, Sgt. Merlin German lost his last battle this spring - an unexpected final chapter in a story many imagined would have a happy ending.
”I think all of us had believed in some way, shape or form that he was invincible,” says Lt. Col. Evan Renz, who was German's surgeon and his friend. “He had beaten so many other operations. ... It just reminded us, he, too, was human.”
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It was near Ramadi, Iraq, on Feb. 21, 2005, that the roadside bomb detonated near German's Humvee, hurling him out of the turret and engulfing him in flames.
When Renz and other doctors at the burn unit at Brooke Army Medical Center in San Antonio first got word from Baghdad, they told his family he really didn't have a chance. The goal: Get him back to America so his loved ones could say goodbye.
But when German arrived four days later, doctors, amazed by how well he was doing, switched gears. “We were going to do everything known to science,” Renz says. “He was showing us he can survive.”
Doctors removed his burn wounds and covered him with artificial and cadaver skin. They also harvested small pieces of German's healthy skin, shipping them off to a lab where they were grown and sent back.
Doctors took skin from the few places he wasn't burned: the soles of his feet, the top of his head and small spots on his abdomen and left shoulder.
Once those areas healed, doctors repeated the task. Again and again.
”Sometimes I do think I can't do it,” German said last year in an Associated Press interview. “Then I think: Why not? I can do whatever I want.”
Renz witnessed his patient's good and bad days.
”Early on, he thought, 'This is ridiculous. Why am I doing this? Why am I working so hard?”' Renz recalls. “But every month or so, he'd say, 'I've licked it.' ... He was amazingly positive overall. ... He never complained. He'd just dig in and do it.”
Slowly, his determination paid off. He made enormous progress.
From a ventilator to breathing on his own.
From communicating with his eyes or a nod to talking.
From being confined to a hospital isolation bed with his arms and legs suspended - so his skin grafts would take - to moving into his own house and sleeping in his own bed.
Sometimes his repeated surgeries laid him up for days and he'd lose ground in his rehabilitation. But he'd always rebound. Even when he was hurting, he'd return to therapy - as long as he had his morning Red Bull energy drink.
”I can't remember a time where he said, 'I can't do it. I'm not going to try,'” says Sgt. Shane Elder, a rehabilitation therapy assistant.
That despite the constant reminders that he'd never be the same. The physical fitness buff who could run miles and do dozens of push-ups struggled, at first, just to sit up on the edge of his bed. The one-time saxophone player had lost his fingers. The Marine with the lady-killer smile now had a raw, ripple-scarred face.
Lt. Col. Grant Olbrich recalls a day in 2006 when he stopped by German's room and noticed he was crying softly. Olbrich, who heads a Marine patient affairs team at Brooke, says he sat with him awhile and asked: “What are you scared of?' He said, 'I'm afraid there will never be a woman who loves me.'”
Olbrich says that was the lowest he ever saw German, but even then “he didn't give up. ... He was unstoppable.”
His mother, Lourdes, remembers her son another way: “He was never really scared of anything.”
That toughness, says his brother, Ariel, showed up even when they were kids growing up in New York. Playing football, Merlin would announce: “Give me the ball. Nobody can knock me down.”
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In nearly 17 months in the hospital, Merlin German's “family” grew.
From the start, his parents, Lourdes and Hemery, were with him. They relocated to Texas. His mother helped feed and dress her son; they prayed together three, four times a day.
”She said she would never leave his side,” Ariel says. “She was his eyes, his ears, his feet, his everything.”
But many at the hospital also came to embrace German.
Norma Guerra, a public affairs spokeswoman who has a son in Iraq, became known as German's “Texas mom.”
She read him action-packed stories at his bedside and arranged to have a DVD player in his room so he could watch his favorite gangster movies.
She sewed him pillows embroidered with the Marine insignia. She helped him collect New York Yankees memorabilia and made sure he met every celebrity who stopped by - magician David Blaine became a friend, and President Bush visited.
”He was a huge part of me,” says Guerra, who had German and his parents over for Thanksgiving. “I remember him standing there talking to my older sister like he knew her forever.”
German liked to gently tease everyone about fashion - his sense of style, and their lack of it.
Guerra says he once joked: “I've been given a second chance. I think I was left here to teach all you people how to dress.”
Even at Brooke, he color-coordinated his caps and sneakers.
”If something did not match, if your blue jeans were the wrong shade of blue, he would definitely let you know. He loved his clothes,” recalls Staff Sgt. Victor Dominguez, a burn patient who says German also inspired him with his positive outlook.
German also was something of an entrepreneur. Back in high school, he attended his senior prom, not with a date but a giant bag of disposable cameras to make some quick cash from those who didn't have the foresight to bring their own.
At Brooke, he designed a T-shirt that he sometimes sold, sometimes gave away. On the front it read: “Got 3 percent chance of survival, what ya gonna do?” The back read, “A) Fight Through, b) Stay Strong, c) Overcome Because I Am a Warrior, d) All Of The Above.” D is circled.
Every time he cleared a hurdle, the staff at Brooke cheered him on.
When he first began walking, Guerra says, word spread in the hospital corridors. “People would say, 'Did you know Merlin took his first step? Did you know he took 10 steps?'” she recalls.
German, in turn, was asked by hospital staff to motivate other burn patients when they were down or not interested in therapy.
”I'd say, 'Hey, can you talk to this patient?' ... Merlin would come in ... and it was: Problem solved,” says Elder, the therapist. “The thing about him was there wasn't anything in the burn world that he hadn't been through. Nobody could say to him, 'You don't understand.”'
German understood, too, that burn patients deal with issues outside the hospital because of the way they look.
”When he saw a group of children in public, he was more concerned about what they might think,” says Renz, his surgeon. “He would work to make them comfortable with him.”
And kids adored him, including Elder's two young sons. German had a habit of buying them toys with the loudest, most obnoxious sounds - and presenting them with a mischievous smile.
He especially loved his nieces and nephews; the feelings were mutual. One niece remembered him on a Web site as being “real cool and funny” and advising her to “forget about having little boyfriends and buying hot phones” and instead, concentrate on her education.
But he was closest to his mother. When the hospital's Holiday Ball approached in 2006, German told Norma Guerra he wanted to surprise his mother by taking her for a twirl on the dance floor.
Guerra thought he was kidding. She knew it could be agony for him just to take a short walk or raise a scarred arm.
But she agreed to help, and they rehearsed for months, without his mother knowing. He chose a love song to be played for the dance: “Have I Told You Lately?” by Rod Stewart.
That night he donned his Marine dress blues and shiny black shoes - even though it hurt to wear them. When the time came, he took his mother in his arms and they glided across the dance floor.
Everyone stood and applauded. And everyone cried.
Clearly, it seemed, the courageous Marine was winning his long, hard battle.
”Some of the folks we lose - the fight to get better is too much,” Elder says. “But Merlin always came back. He had been through so much, but it was automatic. ... Merlin will be fine tomorrow. He'll be back in the game. That's what we always thought.”
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Merlin German died after routine surgery to add skin to his lower lip.
He was already planning his next operations - on his wrists and elbows. But Renz also says with all the stress German's body had been subjected to in recent years, “it was probably an unfair expectation that you can keep doing this over and over again and not have any problems.”
The cause of his death has not yet been determined.
”I may no more understand why he left us when he did than why he survived when he did,” Renz says. “I don't think I was meant to know.”
As people learned of his death last month, they flocked to his hospital room to pay their last respects: Doctors, nurses, therapists and others, many arriving from home, kept coming as Friday night faded into Saturday morning.
Merlin German was just 22.
He had so many dreams that will go unrealized: Becoming an FBI agent (he liked the way they dressed). Going to college. Starting a business. Even writing comedy.
But he did accomplish one major goal: He set up a foundation for burned children called “Merlin's Miracles,” to raise money so these kids could enjoy life, whether it was getting an air conditioner for their home or taking a trip to Disney World, a place he loved.
On a sunny April afternoon, German was buried among the giant oaks and Spanish moss of Florida National Cemetery in Bushnell. The chaplain remembered German as an indomitable Marine who never gave in to the enemy - or to his pain.
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Memorial Day is a time to remember the fallen with parades, tributes and stories.
Sgt. Joe Gonzales, a Marine liaison at Brooke, has a favorite story about Merlin German.
It was the day he and German's mother were walking in the hospital hallway. German was ahead, wearing an iPod, seemingly oblivious to everyone else.
Suddenly, he did a sidestep.
For a second, Gonzales worried German was about to fall. But no.
”He just started dancing out of nowhere. His mom looked at me. She shook her head. There he was with a big old smile. Regardless of his situation, he was still trying to enjoy life.”

By Sharon Cohen , Associated Press
Published on 5/25/2008

Wednesday, May 21, 2008

The Kitchen Door.....

Hi All,

Sorry I haven't had much time to write in the last few days. After my post last week about finding all the wrappers under David's bed, we decided it was time to upgrade the kitchen door.

When David was around 4 we installed bi-fold closet doors on the entry to the kitchen and added a slide lock at the top to keep it secure. This has worked great for almost 10 years, but now that David is 5'2" tall and can reach the lock, the system was in need of upgrade.

Dave and I hit Lowes on Saturday night... this seems to be date night lately... Lowes/Home Depot and then dinner out... oh well. Anyway, we bought a "real" door and lockset and spent most of Sunday installing it. I have spent the last 2 days finishing the wood. I am beside myself excited at how it came out, and the kitchen is more secure than it ever has been. We spent the extra money and bought a keyless entry lock.. check out the pictures below.

The last 2 nights I have slept so soundly at night not worrying if someone is in the kitchen or not. It surprised me how much I was subconsciencely listening all the time for kitchen movement. The keypad even has an alarm system to alert you if incorrect codes are being tried, and after 4 attempts it doesn't allow you to try again for 15 minutes. There is a key override and the keys will be available in an emergency.

This should help in our efforts to keep them out of the kitchen! I guess I get overly excited about the strangest things.. but anyone who knows what we go through will surely understand!

It's Sandal Time!!!


I will always wear sandals that fit.
My toes will not hang overand touch the ground, nor will my heels spill over the backs. And the sides and tops of my feet will not pudge out between the straps.
I will go polish-free or vow to keep the polish fresh, intact and chip-free.I will not cheat and just touch up my big toe.
I will sand down any mounds of skin before they turn hard and yellow.
I will shave the hairs off my big toe.
I won't wear pantyhose even if my misinformed girlfriend, coworker,mother, sister tells me the toe seam really will stay under my toes if I tuck it there.
If a strap breaks, I won't duct-tape, pin, glue or tuck it back intoplace hoping it will stay put.
I will get my shoe fixed or toss it.
I will not live in corn denial; rather I will lean on my good friend Dr.Scholl's if my feet need him.
I will take my toe ring off toward the end of the day if my toes swell and begin to look like
Vienna sausages.
I will be brutally honest with my girlfriend/sister/coworker when she asks me if her feet are too ugly to wear sandals.
When wearing flip flops, I will actually flip and flop, making the correct noise while walking and I will swear NOT to slide or drag my feet while wearing them.
I will go to my local nail salon at least once per season andhave a real pedicure
(they are about $35 and worth EVERY penny!)
Thanks Angie for the great reminder!!!!

Thursday, May 15, 2008

Out to win the war.. (on PWS)

I have picked myself up by my bootstraps and continue the battle at hand.
I have been a mom for 19 years and a mom to a child with PWS for 13 1/2 years. This is not the first time by any means that David has gotten into food... he has been an active food seeker since he was 3 years old. I could write an entire book on the things we have caught him with over the years. I have learned over the years, that I will not win every food battle... he will win some of the time... but I will win the war... I will keep him from being obese, I will keep him from eating himself to death, I will keep him active so that he burns as many calories in a day as possible.. but I have to keep in mind that he is THE MASTER when it comes to sneaking.. he can go into what Dave and I call "stealth mode" and quickly and silently get ahold of something without us knowing... we also sometimes call it
"a drive by"... yes... he wins sometimes.... but what is important is that I win more... He knows he will get caught, but because of PWS he can not stop himself. Who else would eat 2 granola bars on the toilet and throw the wrappers in the bathroom trashcan?

I decided to share that photo with you all the other day because this is our life... every second of every day I am on guard.. our kitchen is locked, but in a house with 9 people, the doors get left open sometimes, food gets left out... this isn't Davids fault, it is ours for not protecting him from it. But to spite that David continues to do well.. his weight is good, he is healthy, he is generally happy, he has friends, he does well in school, and has so much to offer to everyone he meets, he has a kind heart, but he has no control when it comes to food... I MUST BE THAT CONTROL for him.

So... that being said... we keep on keepin' on... and we will win this... I am sure of it.
I will leave you with a quote that I love by Vince Lombardi...

"The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand."

Tuesday, May 13, 2008


I cleaned David's room this morning, stripped the bed and found this pile between the wall and his bed. Some of it I don't even know where he got...

We lock, we monitor, we watch and he still gets into food... you can't see in the picture, but the muffin wrappers are my weight watchers muffins that I buy as little treat for myself...

Life with PWS... it's not easy for him or me.

Sunday, May 11, 2008

Another one growing up....

Alex went to the Jr. Prom last night with his girlfriend Kourtney... thought I'd share a couple of pictures... they were so cute all dressed up... made my heart ache a little bit that anothr one of my babies is growing up...

Saturday, May 10, 2008

I Believe...

I Believe... That just because two people argue, it doesn't mean they don't love each other. And just because they don't argue, it doesn't mean they do love each other.

I Believe... That we don't have to change friends if we understand that friends change.

I Believe... That no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

I Believe... That true friendship continues to grow, even over the longest distance. Same goes for true love.

I Believe... That you can do something in an instant that will give you heartache for life.

I Believe... That it's taking me a long time to become the person I want to be.

I Believe... That you should always leave loved ones with loving words. It may be the last time you see them.

I Believe... That you can keep going long after you think you can't.

I Believe... That we are responsible for what we do, no matter how we feel.

I Believe... That either you control your attitude or it controls you.

I Believe... That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I Believe... That money is a lousy way of keeping score.

I Believe... That my best friend and I can do anything or nothing and have the best time.

I Believe... That sometimes the people you expect to kick you when you're down, will be the ones to help you get back up.

I Believe... That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I Believe... That maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

I Believe... That it isn't always enough, to be forgiven by others. sometimes, you have to learn to forgive yourself.

I Believe... That no matter how bad your heart is broken the world doesn't stop for your grief.

I Believe... That our background and circumstances may have influenced who we are, but, we are responsible for who we become.

I Believe... That you shouldn't be so eager to find out a secret. It could change your life Forever.

I Believe... Two people can look at the exact same thing and see something totally different.

I Believe... That your life can be changed in a matter of hours by people who don't even know you.

I Believe... That even when you think you have no more to give, when a friend cries out to you - you will find the strength to help.

I Believe... That credentials on the wall do not make you a decent human being.

I Believe... That the people you care about most in life are taken from you too soon.

I Believe... The happiest of people don't necessarily have the best of everything; they just make the most of everything.

Friday, May 9, 2008

Field Trips and Special Olympics...

I have had the pleasure of chaparoning a couple of field trips this week andSpecial Olympics Regional Track Meet last Saturday... None of my kiddo's competed, but my 14 year-old Aric ran as a unified player in the 4X200 and their team came in 1st!
So... I just wanted to share a few pictures.

Last Friday I went with Caroline's 1st grade class to the Peabody Museum in New Haven..
Here is Caroline with her friends Nikki and Sophie... it was such a blast to have 3 sweet little girls to keep an eye on instead of a group of rowdy boys that I always seem to get!!!

Saturday was the regional Track Meet for Special Olympics. Aric ran as a unified partner in the 4X200 and their team came in 1st!

Here's Aric at the start of his leg of the relay...

A little team celebration at the finish line!

The winning team!!!

To end the week, yesterday I went with David's 7th grade class to Devils Hopyard and 8 Mile River to release the Salmon that they have raised in their classroom. The weather was very wet, but as you will see from the photo's it didn't put a damper on the days activities. They released the salmon and performed water tests, and environmental tests in the river. We stayed for a picnic lunch afterwards. It was a really fun day!

Here's David with his salmon in the cup, they were "floating" the cups to get the water temp the same in the cup as it was in the river.

Here's a great shot of the river... it was just so pretty, I had to share!

David with hip waders on getting a water sample from the middle of the river.

One of the many creatures that the kids found!

A group of the boys exploring.

Hope you enjoy the photo's... stay tunded next week for photo's of the 7th grade trip to Lake Compounce... we'll see how I do on the roller coasters!!! David is a Dare Devil so I am in for it!!!

Have a great weekend everyone!


Wednesday, May 7, 2008

PWS Awareness Month

Please take a second and watch this video which was made by the mother of a young boy with PWS.

Saturday, May 3, 2008

Pop-Top Update

Jakes class at Salem School has collected over 17lbs of Tabs for Shriners Hospital!

The collection effors are ongoing... please continue to save them and send them into us!

My in-laws and nephew are collecting where they live and have collected a significant amount of them too!



Thursday, May 1, 2008

Happy Birthday Bear-Bear...

Here's some pictures from Bens 9th Birthday yesterday.. He had a great day!

Because it was his Birthday, Jakes Lacrosse coachLet him help on the field.
We finished up the evening with Dinner at one of our favorite restaurants.. Illiano's! I surprised Ben by dropping off a cake earlier in the day that the staff brought out for us and sang Happy Birthday to him!