This idea of resiliency is slowly tattooing itself on my mind. Some of you who have been following us on the journey with Willa might be clearing your throat right now to say, “Uh, Mark. Welcome to the party. That’s exactly what this is all about.” And perhaps that would be a rather easy thing to say with hindsight as your friend. But it’s much more difficult to grasp in real time. As the wake up calls persist, however, it becomes more tangible. Moving from the abstract to the concrete. The latest wake up call I experienced felt like a wake up call within a wake up call. A reality check within a reality check. I’ll explain what I mean by that, but I need to tell you a story first.
Before I do that, I should confess. I know exactly how many times I’ve shed a tear since the news hit us about Willa. The first was the day we left the doctor’s office after Talking About an Early Exit. The second was while breaking the news to one of my best friends over the phone. The third, when I bumped into a former boss a few days after we got the news. I could tell from the look in his eye that he already knew before I could say a word. I wasn’t ready for that encounter. Hence, the lost composure. The fourth was while drafting a letter to our church about Willa’s diagnosis shortly thereafter. And now this story makes five. Ok, so apparently tears are the new thing.
I recently received an email from a man in Houston. He randomly found me through this blog and had the courage to share his family’s story. Rather than simply tell it to you, I want you to walk in it.
The Menough Story
You are a family of five. Three children. All boys. Your second child, Parley, starts having seizures and severe developmental delays within 2.5 months of life. You have no clue what’s going on. Multiple ER visits. The gauntlet of specialists. Time passes. But no diagnosis. Fear starts to creep in. Confusion and worry begin to circle in your mind like a pack of buzzards. Yet, you press on. It’s the only option really.
Fast forward two years. Enter child number three. Alexander. Two months in, something is not right. You don’t know what it is, but you know. Perhaps a sense of deja vu. This feels like Parley minus the seizures. No eye contact. Severe delays. Your mind is jumbled with anxiety as you search for answers. Meanwhile you have all the typical obligations in life that you cannot neglect. Work, home, finances, church, community. Wash. Rinse. Repeat.
Fast forward yet another nearly two years. In an ongoing exercise of wading through the fog, you decide to pick up and move the family south from Nebraska to Houston. As fate, or divine intervention, whichever you choose to believe, would have it, you meet a doctor in Houston who gives you a gift–a diagnosis. ADSL. That’s what the doctor called it. His description of the deficiency will forever be imprinted on your brain–“this thing so rare, you’re pretty much writing your own book.”
Despite the heaviness of this news, relief fills every pore in your body, if only for a moment, as you draw a deep breath in, releasing slowly into the new normal. With ADSL. Two ADSL children.
The story does not end there. The Menough’s are putting on a clinic in resiliency. They reached out to us with a very specific purpose–to provide encouragement and hope, not merely to commiserate. The video below is evidence of that. This is Parley, who is now 5-years old, taking his first steps…
I could not help but see Willa in this. In fact, she was all I could see the first time I watched it. My tear ducts ignite and begin to flood each time I peek through this little window into our future. If you want to learn something about staying the course, about rising above your circumstance, about trusting in a process, and about leaning into your faith, go talk to Parley. He and his family have a better understanding of these concepts than just about any of us.
The Unexpected Takeaway
Resiliency bleeds through each word of this story. Think about the mindset, the attitude, the total disregard for any arbitrary external measurements of success that one must embody to wake up each day to physically work, inch by inch, on something like walking that may never happen. Think about the parental dedication and sacrifice. Just remember Parley next time you are faced with a challenge at work, an unexpected road block, or something that requires you to take the long view and anticipate, embrace, and learn from momentary setbacks along the way.
For me, however, this story is more than resiliency. The Menoughs are the second family we have met that have two children with ADSL. Over the past few months, we have been so focused on Willa, adjusting to her needs, and getting through each day, that we’ve neglected the unknowns that lay ahead with Baby #3 (we’ll call her Ollie). I mentioned this in Re-Evaluate Everythingbut have not said a word about it since. Ollie will arrive in ~5 weeks. There is a 25% chance that she will have ADSL.
We’ve known this since the day we received Willa’s diagnosis. We were supposed to be preparing for the possibility as the pregnancy progressed. Well, we haven’t. I know this to be true because I was floored when I saw the photo of Parley and Alexander together. It completely took me off guard.
What are we going to do if that is us in a few weeks? This question has been ringing in my head since the Menoughs found us. Frankly I️ hope our response is similar to theirs. A humble air of calm confidence. One day at a time. One breath at a time. Locked in on a higher goal. Committing ourselves to a process of development. Trusting it. Understanding that the setbacks are just as important as the steps forward. Learning to find joy in both. Taking chances rather than falling victim to paralyzing odds. And finally believing, without hesitation, in a God that is working. Working on me and all who have been touched, directly or indirectly, by our children.
Don’t forget to visit our GoFundMe campaign, These Genes Fit Just Right campaign. We are eternally grateful to all who have loved on Willa. Thank you.