I have fallen into the honey pot when it comes to life. I have said this before, but I feel like I need to make sure I never stop saying it. In childhood I was very blessed, with loving parents and siblings and there wasn’t much in life I ever had to go without. My adult life has been equally fortunate. My husband loves me (there are brief moments when he gets a credit card bill where this love is tested) and we have two happy and healthy children.
Yes, I get stressed just like every other working mom; there are days I feel like I have plates spinning and I am just waiting for one to fall and then the rest come crashing down. When I have those days and go to bed at night I try to remember that these are not real problems. Most of my stress is self-inflicted: no one made me open one store, let alone two, and I am not forced to over-schedule my kids like I do. Life is busy, but life is good.
I try to keep this perspective because I have seen close family and friends deal with real stress – the kind they don’t get to decide about – and handle it with amazing capacity that I’m not sure I would have.
One of these people is my sister-in-law, Rachel. In 2005 her son, Joel, was diagnosed with Duchenne Muscular Dystrophy, a lethal, progressive muscle disorder that affects 1 in 3,500 boys worldwide. Duchenne is a brutal genetic killer – it slowly robs boys of their ability to walk, then of the use of their arms, before it eventually stops their hearts. Currently, life expectancy with this disorder is just to age 30…but researchers are moving fast and we have hope.
There isn’t enough space in Alexandria Stylebook to write about what comes with dealing with this disease or knowing your child has a terminal illness.
The strength and stamina of my sister-in-law and her husband is remarkable. I am confident most days their challenges would bring me to my knees. Every year Rachel, who lives in Houston, sends out an update about Joel on his birthday. This year as she wrote they were coping with the aftermath of Hurricane Harvey. It’s worth the read:
“It was twelve years ago, right around this time of year, that Hurricane Katrina hit New Orleans and thousands of evacuees flooded into Houston. A few weeks later we evacuated Houston because of the threat of Hurricane Rita…
A few weeks after that horrible evacuation, the next storm came – an even scarier one – Duchenne. It was a storm that came to stay. And then last week we were hit by Harvey – another storm that in many ways is so destructive that it has come to stay. The deep sadness that I felt with the Duchenne diagnosis is similar to the deep sadness that I feel for all of our friends that have lost so much from Harvey.
Twelve years ago I was introduced in a very real way to two destructive forces – hurricanes and Duchenne. I have learned many lessons that cross over the many storms in my life…
Lesson #3: There are miracles, but they might look different than you expect.
Joel turns fifteen this month. I vividly remember reading one of my very first Duchenne articles on the internet, and it said that the life expectancy for a kid with DMD was fifteen. I would cry thinking that I only had 12 more years with Joel. Joel is now 15 and STILL WALKING with no major heart issues. Take that Duchenne. Every day that he gets out of bed and still walks we witness a miracle.
So what does this awful but inspiring story have to do with Alexandria Stylebook, or my stores, or you?
Soon after Joel’s diagnosis my husband became involved with Foundation to Eradicate Duchenne (FED), an organization started by Alexandria’s own Joel and Dana Wood, whose son James was diagnosed a few years earlier with this same disease.
There is not much I have ever felt like I could do to help but the one thing I can do is help raise money to find a cure. So every year I host a charity day and night at my store, The Shoe Hive. Forty percent of all sales will go to FED, 20 percent from the store and 20 percent from Brad and me personally. It’s that easy – you shop and we donate. We hope that in the process we will not only raise some money for this cure but also spread the word about this disorder.
So stop by any time during the day on Monday, November 13 or come by that evening for a special party hosted by some of my friends who are pitching in to help find this cure…
Heard the buzz? The Shoe Hive & The Hive are a pair of luxury boutiques in Old Town Alexandria. Featuring both big name designers like Rag & Bone and Stuart Weitzman and smaller brands like AGL and L'Agence, our unique selection and impeccable service are what set us apart.
The Shoe Hive The Hive
127 S. Fairfax Street 301 Cameron Street
Alexandria, VA 22314 Alexandria, VA 22314