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"