Sunday, July 31, 2011

Freeze Frame

I could see it was a rough-cut Tuesday
Slow-motion weekdays stare me down
Her lipstick reflex got me wound
There were no defects to be found
Snapshot image froze without a sound

Freeze Frame! Freeze Frame!
Freeze Frame! Freeze Frame!
Freeze Frame! Now Freeze!

I am usually the one taking the photos.  Just like my dad, I find it more interesting to take photos than to pose in them.  I prefer to be the clown behind the camera getting others to smile or better yet, grabbing that innocent pose they weren't expecting.  This interest is helpful, as God did not necessarily grant me a face ready for GQ magazine or the patience to sit and say "Cheese!”  Fortunately, I was lucky enough to marry someone whose good looks and patience were past down to my kids so when Genzyme called requesting a photo shoot I was OK to sit back and watch. 

Our photographer Chris flew straight from recording the tornado damage in Tupelo and arrived at our house Sunday morning at 10 AM with two bags of camera gear and an energetic spirit.  I don't know why, but as soon as I met her I knew this would be great.  From her caring manner and true interest in the girls' condition you could tell she was here to do something special, to capture a place in time which we would never forget.  Carter and I quickly found ourselves moving camera gear and relocating furniture while the girls settled on their clothes, per the photographer's advice.  It was, "Way too much blue," "Green just won't work," "Perfect for you, but what about the location," etc. until we settled outside for the first shots.  

A few months ago Genzyme contacted us to see if we would be open to having the girls be part of their Pompe promotional materials.  At first I was a bit reluctant.  Other than those that follow this blog, their diagnosis has been invisible to most of those around them, which is just fine with me.  We made a decision early on that they would remain their own people who happened to have a condition named Pompe, not a patient who is also a person.  The decision was taken with the understanding that while this condition may increasingly impact more of their life over time, they will never allow it to impact all of their life.  It will never define them.

Our first photos were quick shots of the family - the five of us, the kids, and even a few with the dog thrown in for laughs.  Then, for several hours she took photos of Maddie by her garden, Emma and Maddie playing board games, and others.  One of her goals was to show the girls in different situations, being mobile, using their hands well, and enjoying themselves.  After all, a smiling photo is a message everyone can appreciate.

By the end of the photo shoot we had relocated across our house and backyard several times and shared a few great stories along the way.  In the process we learned about her adventures around the world and she learned about our adventures in suburban USA.  When she departed there were genuine hugs all around, a phone number to call next time we visit Chicago, and a promise that she would do her very best to produce worthy photos.  She could see that our kids held a little magic among them and she wanted to make that come to life.

We recently received a CD of photos and three framed shots for our home.  She was true to her world.  Behind the shading and the dimension, the color and the location, the magic is there.  It is even there among a family (with very good Photoshop skills on dad).  It is there in the confident look of girl with her smiling brother and there with the comfort and happiness shared between two young girls who have faced more worry in their short years than necessary. 

I'm back to where I belong, behind the camera keeping track of life as it goes by.  While I know I will never have the skill of our photographer, the next time I take that shot, and see that Freeze Frame in my view, I'll remember a good day in summer when magic was captured and all was well. 

Thanks for the memories Chris!

Credit to: The J Geils Band, "Freeze Frame"

Here are a few photos from our day.

Monday, July 11, 2011

Two of Us

Two of us sending postcards
writing letters on my wall
You and me burning matches
lifting latches on our way back home
We're on our way home
We're on our way home
We're going home

You and I have memories
longer than the road
that stretches out ahead

Back in the day before CNN, DVDs, and flat screens, there was something called television.  Not satellite television or on-demand television, just television.  For the benefit of those who are two young to remember, TVs used to be a big box with one dial, rabbit ears, and channels from 1-13, if you were lucky.  Growing up in Southern California’s 70’s, the line-up was simple.  Channels 2, 4, and 7 were the networks; 5 and 9 were the locals; channel 6 was PBS; and the others ran programs I usually ignored.  During the week, you had Sesame Street and The Electric Company in the morning, and The Brady Bunch and Adam 12 after school.  Saturday morning meant Bugs Bunny and Sunday meant Popeye.

In those days you were not able to choose your programming.  You simply followed the TV Guide’s schedule or missed it.  This was particularly important during the holidays when you had once chance to catch your favorite or you waited another 12 months.  From It’s the Easter Bunny Charlie Brown to Frosty the Snowman, you had to watch the schedule or you were stuck watching some cheesy show your mom thought was “cute”.  Strangely, I still find myself doing this at holiday time, checking and asking when this show or that show would be playing.  I am then reminded by my kids that we have them on DVD or they are running 24 hours a day on cable channel 126. 

One program I never missed was The Wizard of Oz.  Each Thanksgiving this hit the little screen and we were sure to catch it.  From a child’s view, the story of The Wizard of Oz is straightforward.  A girl saves her dog, gets caught in tornado, dreams of magical land of strange characters (in color!), and wakes up after learning a lesson.  I did not watch for any life lessons or big messages.  I just liked to laugh at the Lollipop Guild.  However, if you dig a bit deeper you’ll find that the story has a bit more to offer.  It is the story of friends searching for things we all crave at one time or another – to be smart, to love, to be brave, and to go home.  Last month, I was fortunate enough to meet a man who clearly has the first three and is doing all he can to obtain the fourth.

Mike is a man who several years ago started to struggle when walking up stairs.  Like many of us would do, he pushed it aside for a long time blaming it on age, a bad back, and generally a busy life.  After all what else could it be?  Years went by until he finally visited a doctor.  Then came a long line of tests and eventually a diagnosis of polymyositis, an inflammatory muscle disease.  He began treatment and continued his life.  Unfortunately, the diagnosis was incorrect and the treatment was not working.  So he went off the treatment and did his best to manage his condition.  Then came the fateful day in 2008 when he arrived in the Emergency Room.

He was taken to the ER complaining of breathing challenges.  Upon arrival, he was informed that he had toxic levels of carbon dioxide in his lungs and that his weakened muscles were not allowing enough oxygen to be pumped into his system.  They tried an external breathing support mechanism to get him back on track, but it did not work.  Before he knew it, he awoke with something that has changed his life - a tracheotomy.  A tracheotomy is a procedure which inserts an airway into your neck, allowing a person to breathe without the use of your nose or mouth.  The tubing is connected to a machine that controls the level of oxygen and essentially breathes when you cannot.  The immediate concern went away, but what he did not know was that this little incision would keep him from home from that day forward.  

When I first heard of Mike’s situation I was puzzled.  In today’s age of medical innovation, how could someone be forced to stay in the hospital for such a condition?  I did not realize how uneducated I was.  As I’ve come to learn, a trach requires full time care in case of a blockage or failure.  Without on-site care or access to quick emergency assistance, the result could be bad.  The trouble is that full time care is expensive and Medicare only offers it two times a week.  So, without options, Mike waits at the hospital for his chance to go home.  The amazing part is that he does not wait in despair, but with clear focus on his goal.  A goal that takes him home to his eight year old son so the two of them can do all the things a dad and young son should do. 

I visited Mike in the long term care center of a local hospital recently with some hesitation.  Since the girls’ diagnosis we have gone out of our way to meet all the Pompe patients we can and each time I quietly walk away energized or concerned.  Each time I wonder if I am looking at the future of my girls or at what life might have been without their early diagnosis and treatment.  Eventually, I return to a belief that time is on their side, but some people leave a lasting mark.  Mike is one of those. 

I have never been a fan of hospitals (except CHOP!) so each time I walk through one, I am not on my game.  Fortunately, Mike’s jovial hello and warm smile set my fears aside.  When I entered his room, the hospital environment was quickly replaced with connections to his son.  There were photos of his son at home and at church, by the pool and on the baseball field, with his mom and with Mike.  There were letters and artwork, and posters everywhere.  Each showed a young, smiling boy full of life.  Mike’s reason to return home was clear.

During our visit we spoke about his son, his wife, the Yankees vs. the Mets, our mutual Pompe friends, my kids, his plans to get home through new treatment options, and his son, once again.  After a few minutes I forgot about hospitals and trachs.  I forgot about Pompe and long term care centers.  This was more than a hospital visit.  It was two dads who had never met each other, yet shared something unique.  After an hour or so of chatting, Mike’s brother arrived for his regular visit, so I thanked Mike, wished him the best, and made my way home.  As I walked out his room and past the other patients in the building, I thought about being a kid and watching The Wizard of Oz.

If you recall the end of movie, the Scarecrow, the Tin Man, and the Lion finally realize their goal.  Across their whole adventure, they believed only a Wizard could bestow their wishes, but they found they only needed a chance to use their skills to benefit others.  Mike’s chance is not coming in the form of a hot air balloon, or ruby slippers, but in an RV.  Yes, he is headed off soon, away from the hospital, and on his own adventure which will hopefully bring him one step closer to his goal.  I know this is not a Hollywood movie where everything works out in the end, but my hope is that one day he, like Dorothy, will be able to wake in his own bed, with his family by his side, and tell them, “There’s No Place Like Home.”  

Keep up the fight my friends!

Credit to: The Beatles, “Two of Us”