Friday, November 19, 2010

In The End - Happy Anniversary

And in the end
The love you take
Is equal to the love you make

November 18, 2010 is our anniversary.  It is one year after we received Maddie's diagnosis of Pompe disease.  Over the past of couple months I've thought a lot about this day and what it means to us.  I discovered it means much more than a medical milestone and much more than what a Hallmark anniversary card can cover. 

It means “family” because without the five of us relying on each other, with the support from our family in California and Oregon we would not be in this place today.  It means “advocacy” because by being our girls’ advocates it’s been possible for them to see the best doctors and get the best treatments.  It means “courage and inspiration” because our girls have shown us how inspiring real courage can be.  It means “friendship” because of those who have stood by us when times were tough.  But, above all else it means “love” because of what we've learned about its power in our lives. 

We've learned that love for your children can give you strength you never imagined possible.  We've learned that love from your children can fill you up like never anticipated. We've learned that love between your children keeps them together and binds their commitment to each other.  And, we've learned that love from those around you can humble and surprise you each and every day.  

One of my favorite holiday movies is, "It's A Wonderful Life".  It's the story of George Bailey who sets aside his dreams and ambitions to run his family business when his father passes away. In doing so, he helps those who need a little help here and a little help there.  When George hits financial trouble and sees only despair, he meets his guardian angel and is allowed to see how things would be if he was never born.  While he expects everyone would have been better off without him, he finds the opposite.  He finds that his little impact on each and every life was invaluable.  At the end of the movie, George returns to his family to find everything is just as he left it.  He is still facing trouble and expects to be arrested any moment, but is overwhelmed with the joy of being alive and with the ones he loves.  Suddenly, one by one, people George has helped over the years arrives at his door to help their friend in need.  Despite their own financial limitations they give George what they can, out of love. 

So what does the story of George Bailey have to do with the Crowleys? One year ago we stood in our home after a long drive from CHOP feeling more alone than ever.  We wondered what the future would bring and how we found ourselves in such a predicament.  And then, day by day, week by week, and month by month our guardian angel lead people into our lives with cards, meals, hugs, open ears and open hearts.  Some we knew well, while others were strangers.  What they all had in common was why they came.  It was love.

Now I’m not going to place myself in the same status of George Bailey because I don’t believe I will ever have the impact on people’s lives that he did, but I do believe I’ve seen the blessings of guardian angels over the past year.  They are in the gentle words of a doctor, the new long distance Facebook connections, the smiling faces at CHOP’s Day Medicine, the helpful text when you’re feeling low, and a lovely meal after a long day at treatment.

So in the end, if we could go back and change what we heard that day at CHOP, I would do so in a New York minute, but this is not a Hollywood movie.  I cannot guarantee a happy ending with Pompe. However, I can guarantee that the positive experiences of this past year outweigh the negatives.  Where one year ago we stood feeling alone, today we stand together, with many others, emboldened and confident for the future.  And this is because of love.

Happy Anniversary Maddie!  We are so proud of you!!

All for two and two for all!

Credit: The Beatles, "In The End"

Sunday, November 14, 2010

Clowns to the left of me, jokers to the right

Well, I don't know why I came here tonight

I got a feelin' that something ain't right

I'm so scared in case I fall off my chair

And I'm wonderin' how I'll get down those stairs

Clowns to left of me, jokers to the right

Here am I stuck in the middle with you

Yes, I'm stuck in the middle with you

And I'm wonderin' what it is I should do

It's so hard to keep this smile from my face

Losin' control, I'm all over the place

Clowns to left of me, jokers to the right

Here am I stuck in the middle with you

All the signs were there, but I tried to ignore them.  The warm days of summer turned blustery, the school buses suddenly appeared, the leaves turned colors, and the radio started to play songs about a big jolly man in a funny red suit.  Yes, it's Open Enrollment season.  

Open Enrollment is that special time of year when companies give their employees the opportunity to make health care choices for the upcoming year.  It's also the time of year you receive finely wrapped packages filled with numerous full color brochures all with the same two messages.  The cost of health care has increased again and the options are more confusing then ever so good luck!

Don't get me wrong.  My company does a nice job informing employees through a mix of brochures, websites, internal meetings and help lines.  However, they don't quite have the system optimized for those of us with "special" insurance needs so it takes a bit more expertise to navigate through the information.  Last year at this time we still had not received Maddie's diagnosis, but knew something was up, so we played it cautious and chose a plan that came with platinum frequent flyer status.  

All in all it worked well, but I wanted to make sure it was still the best deal moving forward.  As there were a couple new options this year I called our company support desk and asked them all the usual questions about deductibles, coverage, and doctor choices.  The operator did such a great job answering the usual questions I thought it was safe to throw her a curve ball.  I don't like to advertise the complexity and cost of the girls' treatments within my company so it went something like this. "Let's say someone had to get infusion therapy once in a while and it was expensive...say $10,000 each time.  Would that be covered?"  The response was, "Well, that's interesting.  Let me see.  Perhaps you should call the insurance company directly."  

I was hoping to avoid this, but picked up the phone and called the insurance company anyway.  After weaving through layer after layer of the automated answering system I finally made it to a real person.  I exchanged a few niceties and launched into my question as clear and detailed as possible.  Suddenly, the real person began to speak through some kind of automated voice machine.  "Thank you for calling XYZ Insurance.  Our ABC and DEF plans offer competitive coverage and the best service to our customers."  Hello?  Is there a real person there?  Hello?  She started again, "Thank you for calling XYZ ..."  I hung up.

So there I sat with clowns to left of me and jokers to the right.  Stuck in the middle.  And then I remembered to call Lynda.  Genzyme has a Care Coordination program, which assigns a Case Manager to each family receiving one of its therapies.  Ours is Lynda.  She has been a great help over the past months as we meandered our way through the maze of hospitals, insurance coverage and payments.  After one short discussion with Lynda, she called the insurance company, confirmed our coverage, identified the options, and helped me with the decision.  Once again Genzyme proved they are different.  When you feel alone, they are there to support.  When you need advice, their experts are ready to help.  And, when all you find are clowns to left of you and jokers to the right, you are happy they are stuck in the middle with you.

Thanks again to Lynda and the whole team at Genzyme!

Credit: Stealer's Wheel, "Stuck In The Middle With You"