- To leverage the power of the interwebs to bring awareness to a broader audience about an extremely rare disease (ADSL) and hopefully provide an opportunity for connection to those in a similar situation;
- To provide a forum for our friends and family, who we love so dearly but don’t see often, to keep up with our sweet Willa’s progress in managing our new reality with a rare disorder; and lastly
- To share some of the lessons we learn along this journey about life, about suffering, about joy, about love and what is real.
Those that know me know that I’m a relatively curious individual, both intellectually and spiritually alike. Over the past few years, I have spent somewhat of a shameful amount of time working on myself in a number of ways. I ran a couple of marathons, did a handful of triathlons, joined the crossfit movement, etc. I started reading. A lot. And listening to podcasts and audiobooks even more. I plowed through every bit of content from Tim Ferris (Tools of Titans is a must read by the way) and his friends. Full disclosure: I was a bit of a Ferris junky there for a while. I began approaching mindfulness through a regular practice of meditation. I developed a morning routine with a “priming” exercise at the recommendation of the great Tony Robbins by inviting gratitude, the presence of God, and focus to my day. I was journaling regularly with a sprinkle of daily affirmations like my friend (and I use that term loosely here) Scott Adams suggests in How to Fail at Almost Everything and Still Win Big. I even followed Debbie McMillan’s advice on How to Design a Life by writing a descriptive essay about a-day-in-my-life 10 years from now. Why? Because writing things like this down works like magic in bringing them to fruition. So I confess–I have been a bit obsessive about personal development.
At the same time, my career has thrived as well. I have spent the last several years working as in-house counsel for a Fortune 200 company. During that time, I got promoted. Twice. Labeled a top performer. And offered an opportunity to move out of the legal group and into the business to lead a couple of important business functions.
I had a beautiful wife (and still do) who is smart and full of life, and two incredible miracles in my children, Rowe and Willa. As we say in the south, I am truly blessed.
Looking back over the last many years, it has almost been too good to be true, frankly. It’s as though I’ve been in the driver’s seat of life. Complete control. Owning it. Sure I have been far from perfect in more ways than I care to discuss here (for example, by being consumed by work and embarrassingly selfish at times). But those were mere side effects to doing pretty good at life.
And then, like a dark thunder head eclipsing the sun, everything changed. And rain it did. I came home for lunch on a Monday, which was unusual, but my parents were in town visiting, so. Sarah was crying. She had just gotten off the phone with the doctor. Willa’s geneticist. We had a diagnosis.
A diagnosis is good right? This is what we had been hoping and praying for for more than a year now. We knew something wasn’t right with our sweet Willa before she reached six months old. We didn’t think she could see at first. She didn’t make eye contact. Then she couldn’t stabilize her self well enough to sit up on her own. She didn’t rollover. She didn’t crawl. She couldn’t bring food to her mouth. She was drastically delayed developmentally. We saw every specialist imaginable and kept ruling things out. One by one.
So here we were. One year later. A diagnosis. My heart pounded on my chest like a hammer.
ADSL. Adenolysuccinate Lyase. That’s it.
It’s a rare genetic disorder, a metabolic disease. There have been fewer than 100 cases ever in the world. Most of those are not in the US. There are no proven cures, treatments, or therapies. There is a spectrum of severity. However, it’s too early to tell where Willa falls on that spectrum. In the worst cases, it’s life threatening. In other cases, typical life challenges include psychomotor retardation, chronic seizures, and autistic behavior. You can read more about ADSL here.
Suddenly every abnormality we ever questioned about Willa’s development and behavior made sense. Then nothing made sense. I consider myself an optimistic person, but this was too much. We spent the following several weeks trying to come to terms. Trying to accept the devastating news as real. Fixating on pain and loss. For Willa. For ourselves. For her brother, Rowe, who’s too young to understand.
I write about this as if these are some distant emotions that have passed us by. That is misleading. This is still very fresh. And we are still very much in the ditch. This news hit us just over four weeks ago. It is, without a doubt, an ongoing effort in acceptance.
To add to the wreckage, Sarah is pregnant. Due to the genetic nature of this disease, there is a 25% chance that the new baby will experience ADSL as well.
I don’t know what to say really. I cannot explain why these things happen to people. I won’t try either. It’s simply devastating. But I will attempt to learn something from it. If I’m being honest, it’s the only way I know how to deal with such realities.
The Lesson You Don’t Want to Learn
The simple lesson in all of this is, don’t wait until tragedy hits your life like a Mack truck to reevaluate everything. I am a testament of what that approach looks like. Trust me when I tell you that it is not pleasant.
So do it now. Re-evaluate everything. And I mean everything. Who. What. Where. When. How. All aspects. But be careful. If you are like me, even if you are brave enough to engage in an intentional exercise like this, you will overlook things. And what might those things have in common? Again, if you are like me, it will be the things over which you believe (subconsciously or otherwise) that you have the most control. But these areas of perceived control are the most important pieces of our lives to consider, or reconsider rather.
If you care to take something away from Willa’s story and our experience with a rare disease, do this reevaluation exercise. And do it with pen and paper in hand. In my experience, there is something almost magical (seriously) about writing these kinds of things down.
Try listing exhaustively everything in your life that has significance, value, or that gives you meaning (large or small), and particularly anything in which you find security or a sense of control. It could be your home, your car(s), your job, the relationship with your spouse, kids, or friend, your health, their health, etc. What if they were gone? Maybe just one of them or perhaps all of them.
What would you do differently? Where do you spend more of your time? Where do you spend less? What do you appreciate more? What do you appreciate less? Who do you lean on? And what does that relationship look like today? Have you invested in it? Do you find yourself suddenly leaning on a God or a friend that you have neglected? How would you reshape your life? What obstacles are preventing you from achieving those things tomorrow?
I would suggest you write the answers to these questions with as much specificity and clarity as you can muster. If taking the steps to make these changes in your life starting tomorrow seems too daunting or complicated (which I would argue is really not the case; that’s just your mind justifying your current state), you can at least do this. Put your list and your answers to the questions above on a page, in a book. Put that book on a shelf that you pass by relatively frequently. And pick it up and read it at least once per year. I’m working through this now and would ask you to join,
This is not so dissimilar from a process called “Fear Setting”, which Tim Ferris recommends. This is the opposite of goal setting. It teaches us to recognize that sometimes the outcomes of our greatest fears are not so scary after all. So therefore go conquer them now is sort of the point. Read more about fear-setting here.
I feel compelled to point out that this is my first ever attempt to write publicly, particularly about such personal things. My tendency is to lean on privacy before publicity. Honestly, the vulnerability in something like this is excruciating. But my hope is that such vulnerability provides opportunity for connection and learning.