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My friend Anne launched her labor of love this week, and tonight we will be toasting her published work, Sage Living. The book is a visual tour of living spaces that have been transformed to reflect and celebrate the occupants’ lives. Over a year ago Anne asked if my family would be willing to tell our story and share how we updated one of the rooms in our home to meet our needs. Of course, we said yes!
I received my very own copy of the book last week and found myself reading the words with anticipation as though it were someone else’s life. Flipping though the images of the little people in my life was a sweet reminder of my own journey. Some of you may remember a post I wrote a few years ago sharing why I was taking a year off from all things “ltd”. With the release of Anne’s book, it seems like a good time to tell our story in my own words. Plus, life has taught me that sharing chapters out of our personal lives has the potential to provide healing and hope to others. So here it is…
A little more than five years ago my husband received a diagnosis that would slightly alter our pre-made plans for life. Unlike many stories that start with a similar sentence, we count ourselves blessed to have been spared from a health crisis that might limit his time on earth or his capacity to continue to be the smartest, funniest, most loving person I know. Instead, our life was set on a slightly new trajectory, and we were given a new pair of lenses to see life through.
My husband was diagnosed with Spinal Bulbar Muscular Atrophy (SBMA), better known as Kennedy’s disease. Kennedy’s only affects men and is an inherited neuromuscular disorder that causes progressive weakening and wasting of certain sets of muscles. Unlike many neuromuscular disorders, Kennedy’s affects its patients in varying degrees at varying rates. Some find that the disease takes them from walking to a wheelchair in a short period of time, while others plateau for a while before a notable decline is evident.
When we first received the news we kept it to ourselves because we didn’t know what this information actually meant. He seemed to be perfectly healthy. Only he knew how much he struggled to walk a staircase or carry a child. Fast forward two years when it became evident that something was amiss. There was a little hitch in his giddy-up. When concerned people inquired he would simply say his back hurt which in turn earned him a small collection of chiropractic business cards.
Even so, we had a positive attitude and felt like “We’ve all got ‘something’ and this is just our ‘something’.” We seemed to be taking everything in stride with as little drama as possible. Then one afternoon, after a day at his routine quarterly check-up at the neuromuscular clinic, he called to report the findings of the day. That particular day every single one of his meetings with the various specialists revealed a decline in his condition, and my otherwise glass-half-full husband called me to share that the disease might be beginning to get the upper-hand. The clinic is several hours away from our home, so I had a few hours to process the information and think about how to best respond when he walked through the door.
Before I move on with our story, let me give you some background as to what was going on with me and my start-up business. The same year we received the diagnosis was my first full year in business at ltd. I was putting together a conference for women. The mission of the conference was to inspire and connect entrepreneurial women. We secured incredible national sponsors and gathered some of the best speakers and experts around. We sold out our 500 ticket capacity and there was great buzz around the event. On all accounts, we killed it!
We were able to do the same thing the following year, and this time we made it a two-day event with more focused breakout sessions and content. We had traction and momentum and were well on our way to becoming a recognizable brand in our niche.
Okay, so now you’re up to speed and have a little context for the rest of the story. So as I was preparing my words for my husband’s return from the clinic, I had an epiphany. “How do we do this with as few regrets as possible?” I didn’t want to find ourselves looking back and saying, we “should have” or “could have.” So in the span of a few hours I concocted this plan to consolidate memory-making travel into a year and a half. There was so much we wanted to see with our children. We had talked about sharing places and experiences with them, so why not sooner than later? Why not now?
I dreamt up a scenario in which I would take our three children out of their preschool, 1st and 4th grade classes to homeschool them while we traveled. As I let my thoughts steep I realized I would not be able to organize another conference for the upcoming year and even though I knew I would lose momentum, I felt convicted that this was what was right for our family. I believed I was responsible for the question life was asking right then and there. I also was sure that God would give me the faculties to deal with the outcome.
This was not the first time I had a half-cocked idea, so I anticipated the various responses from my husband: “You’re so sweet but a little crazy!” Or “You’re so smart, but you’re not a teacher.” Or ” We can’t afford this.” Or “You just started this business, are you sure this makes sense?” I think you get the idea. I was sure he would be resistant and was shoring up for battle — I knew in my gut this was the right thing to do.
A couple hours passed, and he walked in the door looking a little defeated. I told him to sit down and just listen. I shared my big idea and without reservation he responded with a “Yes!” I couldn’t believe my ears. As the idea settled, I realized what I had suggested and second-guessed myself. Holy crap! What did I just sign us all up for???
I quickly got comfortable with the idea and began to map out our travels. We quickly realized that as much as we wanted to, traveling overseas was not in the cards. It would require a lot of back and forth travel for the Mr., since he had to keep his day job to pay for the newly minted plans. Instead, we focused on a stateside tour of our own country based on its history — plus, I needed some home-school props. This strategy would also allow my husband to fly back and fourth to meet us for three-day weekends at our next destination.
During our almost 18 months (two summers and one school year) we hit 38 states and ended it with a last hurrah in Mexico with extended family. It was a crazy adventure. We took in monuments, national parks, and cities big and small. We tried all types of food and met all kinds of people. We saw a post-Katrina neighborhood still desperate for attention, went down a 1000 feet deep into a gold mine, and climbed to the top of the Sears Tower. We listened to stories from a slave trading hall and saw pictures of immigrants landing on Ellis Island. Mr. Jones and I made a few mistakes along the way, too. We accidentally walked our children down Bourbon Street in the French Quarter as the sun set on all things charming and quaint. And then there was the SXSW music festival with the band of full-body fishnet stocking-clad women hanging out with us at the shaved ice stand–that’s a whole other story. By all accounts, it was a full year.
These long trips offered a kind of silence I had not heard in years. Various forms of locomotion transported us from location to location, but late night drives on interstate highways became my favored sacred space. During this time I would often reflect on the day and an overwhelming sense of gratitude would wash over me. One thing in particular I found myself growing more and more thankful for was my work–I love what I do. I was also keenly aware of the freedom I had to put my work on pause. I was grateful for my work, the meaning it provided and the flexibility that entrepreneurship afforded. I became even more passionate about helping women embark on an entrepreneurial path that would offer this same meaning, freedom and flexibility. I also knew that starting up and growing a business are not easy, and inspiring women alone was not sufficient. I needed to support their journey with tools and education to make the process achievable. My vision for ltd narrowed as I consider what it would look like upon my return.
So in 2013, when we finally arrived back home after traversing our great country, I began focusing my efforts on inspiring would-be entrepreneurs through sharing stories of successful women, AND equipping these hopefuls to launch and grow their own ventures through smaller workshops and even one on one consulting instead of the larger scale conferences. I wanted to be on the ground helping women LIVE out their dreams not just motivating from a stage.
So that’s a little about how our life took a turn that set me on a slightly new path. My husband continues to deal with this nuisance of a disease. He now wears fancy braces to help him walk and occasionally rocks a walking cane, further cementing his Jimmy Stewart status. We continue to pray for a cure but are deeply thankful and aware of what we have been blessed with.
For those that made it to the bottom of this, thanks for your time. I hope our story might provide a little hope for your own journey and a reminder to be grateful in all things. Life closes and sometimes even slams doors. Pay close attention to where the breeze from the open window is coming from.
xo-Nada