Maddie's Mission

I've got to admit it's getting better It's a little better all the time I have to admit it's getting better It's getting better Since you've been mine They say misery loves company.  Unfortunately, I’ve sometimes found this to be true when it comes to people facing the tough issues in life.  It is far too easy to play the victim and become bitter instead of looking the challenge in the eye and daring to fight on.  There’s no doubt that life with a chronic disease is not all wine and roses.  I see it in my own house when days filled with exhaustion or weakness can darken the brightest mood.  While I wish these days never came my daughters’ way, they will continue.  However, when those days arrive I ask them to get back up and remember a time when the light shined and filled them with hope.  Fortunately for our family, the sun always shines in Gainesville. About a year ago we took our first trip down to Gainesville, Florida to meet Dr. Barry Byrne....

Let me take you down Cause I'm going to Strawberry Fields Nothing is real And nothing to get hung about Strawberry Fields Forever Living is easy with eyes closed Misunderstanding all you see It's getting hard to be someone But it all works out It doesn't matter much to me Shortly after we moved to the East Coast we built a small garden at the end of our driveway so the kids could grow vegetables and we could see progress each time we came home.  With our neighbor’s help, we built the outline with railroad ties, secured the base with spikes, and added small seats at each corner so the kids could sit and plant or just sit and enjoy time with their achievements.  We had no intention of securing a food supply for the next natural disaster or becoming organic farmers.  This was just your normal small garden so we could bring a bit of country into the suburbs. Over the years the garden has produced chives, lettuce, tomatoes, eggplant, zucchini, and even a pumpkin or...

I'm sittin' in the railway station Got a ticket for my destination On a tour of one night stands My suitcase and guitar in hand And every stop is neatly planned For a poet and a one man band Homeward bound I wish I was Homeward bound Home, where my thought's escaping Home, where my music's playing Home, where my love lies waiting Silently for me In Good Day Sunshine I wrote about a family that loaded up a car with their hopes, fears, and lots of prayers and headed out on a new adventure at CHOP.  I wrote about a family who started an adventure which they never wanted to take nor anticipated. And, I wrote about a family whose children faced their adversity with such grace and strength that a father would never be the same. Just over one year later those car rides will be coming to an end and a new adventure will begin. That family is Homeward Bound . I write today about “that family” because so much has happened over the past year that it is hard to rem...

When the night has come And the land is dark And the moon is the only light we’ll see No, I won’t be afraid Oh, I won’t be afraid Just as long as you stand, stand by me I haven’t written too much about our son Carter.   Maybe it’s because he has enough to manage as the big brother and maybe it’s because I wanted to keep him away from the attention.  But, after his eighth grade  chorus class sang Stand By Me , a post stuck in my head.  Whatever the reason, today is his day and it is well deserved. Carter has the good fortune and the misfortune of being the only boy stuck between two sisters.  The good fortune part the deal is threefold.  First, he doesn’t have to compete with his brothers for the biggest eater, strongest wrestler, or best joke teller like I did (and lost on all accounts).  Second, he doesn’t have to share Dad’s attention for his lacrosse and football games.  And third, he is close enough in age to eventually date both of ...

I love to laugh Loud and long and clear I love to laugh It's getting worse every year The more I laugh The more I fill with glee And the more the glee The more I'm a merrier me Most of what I've read about Pompe Disease and fatigue relates to respiratory issues.  According to pompe.com, "Most people with Pompe disease eventually experience breathing difficulties. These difficulties may start out mild, and it may take some time before patients or doctors recognize them.  Pompe disease often results in a weakened diaphragm, the large muscle located just below the lungs that plays a crucial role in breathing. A weakened diaphragm makes it hard to breathe deeply and get enough air into the lungs, especially when lying down, ... eventually leading to respiratory insufficiency." 1      Fortunately, our girls have performed well on their PFTs (Pulmonary Function Tests) to date and have even shown improvement in some areas.  ...

You can read it in the Sunday papers, read it in the Sunday papers Just a short update this time around.   As mentioned in my last post, Whats So Funny 'Bout Peace Love and Understanding? , Dr. Lisa Sanders of the New York Times has written an article about Maddie's diagnosis. The article was released in today's New York Times Magazine.  Please check out the link here, New York Times Magazine .  Better yet,   go pick up a fresh copy, a large coffee, and enjoy the read! All for two and two for all! Matt Credit to: Joe Jackson, " Sunday Papers "

As I walk through 
 This wicked world 
 Searchin' for light in the darkness of insanity. I ask myself
 Is all hope lost? 
 Is there only pain and hatred, and misery? And each time I feel like this inside
 There's one thing I wanna know What's so funny 'bout peace, love and understanding? What's so funny 'bout peace, love and understanding? I believe in the power of the written word.  At best words can increase understanding, offer enlightenment, and in some cases even bring healing.  An increased understanding of Pompe Disease was my hope when Dr. Lisa Sanders first contacted us.  I did not expect to also experience peace in my heart and love from strangers, but as usual Pompe always throws us a twist.  A few months ago, Donna received a call from Dr. Rand at CHOP asking if we would be willing to share Maddie's story.  She explained that there was this interesting writer for the New York Times who pens a column about medical mysteries and is also...