So you receive news that your daughter has a rare disease. The first response is, I don’t believe you. Shock. Denial. The second is, what can I do right now to fix this? Nothing.
Next you learn that it is going to be a few months before you can even get in to see the doctor who just delivered this news. In the meantime, here’s a few medical journals for you to review. What? No way! So when the doctor calls a few days later with an opening the next day, you jump. Who cares really that you have to cancel three meetings and two conference calls? Or that you live two hours away from that doctor? You go. No questions.
But what were you expecting to get out of this visit? You have already been told (and read) that there are no treatments or therapies that work. You’ve also been told that it’s too early to tell how severe this disorder will impact your daughter. It’s just too soon. Yet you hurry to this appointment in ernest. This entire situation has clearly blurred your sense of logic. But you don’t care. You genuinely believe you are going to learn something that might make this better. I suppose it’s a testament to the power of hope in the human mind.
This was Sarah and me less than three weeks ago.
Amidst all the hustle to make it to this doctor’s visit, we failed to think through the scenarios, the right questions. I blame myself of course for how the conversation went down. In my professional life, I take pride in being able to ask the right questions to steer a conversation in the direction I need it to go. It’s an acquired skill. Think about this for a minute. How often do we, as individuals or within our companies, make a bad decision or adopt the wrong strategy simply because we fail to ask the right question? It happens all too often. But I digress…
In any event, I asked the doctor a question, and the answer was equal parts positive, negative, and uncertain. The exchange went something like this:
Doctor: I’m really impressed with her progress. Her eye contact has improved significantly. She’s showing greater control in her torso. I can visibly see her improvement.
He’s right. She couldn’t hold her bottle to her mouth by herself a few months ago when he saw her last. She’s reaching for things. And she can now sit up unassisted a few seconds at a time. Small victories, right?
Me: That’s great. I agree, but how do we know what good looks like with her progress? I mean, she may be progressing, but how do we know if she’s progressing at the right rate and in the right ways?
Doctor: Well, you don’t. This disorder impacts every child differently. You just need to focus on progress.
Me: (not exactly accepting that answer) But surely you will have an opinion about the speed of progress over time, right?
My eyes dart to the left at Sarah. Her eyebrow narrows. I know this look. This is the precursor to an eye roll that says, are you really about to “lawyer” this doctor right now? I acknowledge the look but don’t relent quite yet.
Me: I mean, how are we supposed to measure this thing?
Spoken like a true moron who thinks he can treat his child’s disorder like a business problem. I deserved the eye roll.
Doctor: (sticking to his strategy to keep things as vague as possible) It’s just something you have to watch closely. It’s not helpful to you or Willa for me to speculate about her prognosis. I’ve been treating neurological genetic diseases for a long time. Every time I try to speculate about the future, the child proves me wrong. Literally every time. So I’m not going to do that to you all. But I can tell you, based on my experience, how these scenarios tend to play out over time.
That was a ginormous BUT.
The doctor (who I now have mad respect for for his ability to have an extremely difficult conversation with compassion and grace) went on to describe what the end could look like and how soon it could come. He explained that in many cases, the child progresses. Much like Willa is doing today. Slowly but steadily. And then they get sick. Could be a common cold. A virus. Anything. And that’s when the regression occurs. You have to work twice as hard to get the child back to where they were before. You press on and then it happens again. May be a respiratory infection this time. Or a seizure.
This vicious cycle may continue for “5 or 10 years” before the child begins to disengage and become less interactive. At this point the child may also begin to struggle with eating. And then finally the end comes through a simple bout with pneumonia. In other words, the genetic disorder that brought us here (ADSL) will not likely provide the early exit. Something else will.
Picking Yourself up off the Floor
So that was heavy stuff. Like two tons of sand being dumped on your back. As you can imagine, by this point in the conversation, we had forgotten all about Willa’s incredible progress. And that’s exactly what the doctor was trying to avoid. For good reason. Lesson learned.
We started this blog for three distinct reasons. If you haven’t done so already, you can read them here in Re-Evaluate Everything. One of those reasons was to share our lessons learned along this journey. The prevailing lesson in today’s episode is obvious–a not so insignificant part of parenting through something like this is learning to pick yourself up off the floor (repeatedly) by focusing on what you can see (Willa’s progress), not what could be (an early exit).
Thanks to Sarah’s unbelievable commitment to Willa’s therapy and the fine people at Hope Landing, Willa is progressing. Her motor skills are developing in a tremendous, albeit small way. I shared some of that progress through my conversation with the doctor above, and you can see it for yourself in the photos throughout this post.
This idea of “picking yourself up off the floor” is of course nothing new. Put another way, it’s about learning to be resilient. It begs the question though, how resilient are we? Is this something you are born with? Can it be developed? If so, how? These are questions that Sarah and I are wrestling with openly.
I believe firmly that the events of our lives are like a customized, individualized training ground. The experiences we face create transferable skills that equip us to handle the next obstacle course. The challenge is figuring out how to tap in to those experiences at the right time and in the right ways. This is easy to say. Harder to do, of course. This is particularly challenging when you think your whole life that you are training for a marathon, but it turns out it’s a Tough Mudderinstead. And you discover this after the race has already started. Most people don’t train for marathons by doing army crawls through the mud while getting shocked by 10,000 volts of electricity. I’m just saying…
So what systems can we leverage to finish this “tough mudder” with dignity? How do we tap in to the experiences we have and apply them to a new arena? Well for us, there are three potential answers to these questions, each of which is connected to the other.
- For starters, it requires something I call hardcore intentionalism. That means there’s no passive way through it. Nothing is intuitive. There is no roadmap. You have to sit down and actively chart a course. How are you going to respond when it happens again? What steps will you take, before and after? This concept is applicable to so many areas of our lives.
- The second, which is a clear extension of the first, requires a healthy dose of targeted reflection on the experiences you have to build upon. This takes me to my childhood. To my 12-year-old self when I learned that I have Type 1 Diabetes. Keep in mind this was a much bigger deal in the early 1990s than it is today. I remember vividly thinking that I would likely lose a limb soon (because that’s what happens to all diabetics, right?) and my budding sports career was over before it started (you can send those Major League Baseball scouts home, I thought). It sounds silly. I know. But in all seriousness, it was a scary time for me and my family. We didn’t know how much of the disease was controllable and uncontrollable. Through it all, my most lucid memory is of my dad. Talking to me about adversity and how I have to learn to overcome it. To him, one’s ability to look adversity in the eye and embrace it head on is the true measure of a person. Mental toughness is like a broken record in my brain. So thank you, Dad. From the bottom of my heart. This tool that you supplied me with is now a huge part of my day-to-day.
- Third, and again, this is certainly an extension of numbers one and two together, is this idea of self-talk. There is significant research that proves this out, the undeniable benefits of positive self-talk. In the interest of brevity, however, I won’t unpack it all here. This is something we have tried to drill into our oldest child, Rowe, from an early age. I’ll let this video of a 2-year-old version of Rowe speak for itself, but if you need subtitles, see the caption underneath.
Translation: “l like myself, and I’m going to have a great day.”
Ironically now, Sarah and I are left trying to practice what we preach. Why is that so hard by the way? Seriously. Anyway, for Sarah, this self-talk has presented itself in the form of simple daily affirmations, like, “Satan, you will not steal my joy today.” For me, it means a nightly routine with Willa of “You are smart. You are strong. You are living a full life.”
So this is our course. These three things. Hardcore intentionalism, targeted reflection, and positive self-talk. Don’t be fooled though. I’m quite certain these things are not enough by themselves. The rest is leaning on faith in something greater than ourselves. And truth be told, these things are probably a mere expression of that faith.
As I conclude this post, I feel compelled to say this. For Sarah and me both, it is becoming increasingly difficult to focus on potential negative outcomes with Willa, just by spending a few moments with her. She has no idea any of this is going on, and she is loving every minute of life. It’s intoxicating. So it’s not all heavy. It’s more-so full.
The response to Re-Evaluate Everything has been truly remarkable. Within a few hours of posting we were introduced to new people (literally from 9 different countries). And reconnected to old people (by that I mean old friends). We discovered that so many of you are dealing with some tough scenarios of your own, some similar to Willa and others not so much. But your wisdom is no less applicable and appreciated. The out pouring of love and support has been overwhelming to say the least. It is nothing short of amazing. We simply cannot respond to it all. I wish we could. To do that, I’d probably have to quit my job and become a full-time blog manager. As intriguing as that sounds, I’m quite sure it’s a poor decision.
Though it’s not enough – thank you. To everyone. Thank you for reading. Thank you for responding. Thank you for loving. And thank you for sharing. Please keep it up. I cannot adequately express the power in all of it, but it is real, and we are so grateful. This experience has illuminated for me just how susceptible we are to becoming fixated on what is right in front of us, but at the expense of so many relationships we have known over the course of our lives. I admit. I literally forgot that so many people cared. So thank you.
Something worth exploring…
There is a specific concept that I want to explore in more detail in the future. This notion of what happens to us when we follow certain instincts–that tendency to pursue the things in our lives that offer the most immediate benefits. This could be anything, such as a promotion or recognition at work. We might say to ourselves, I can put my head down and work hard on this now, so that my family can enjoy nice things with me later. At first glance, this may appear to be a fine strategy for how we prioritize our time. I’ll be the father I want to be when the kids get older and really need solid parenting. And the husband I want to be when we have the financial security that my wife and I both want. Can we really sequence our priorities in this way? If this is something you are interested in exploring with me, please let me know.
16 thoughts on “Talking about an Early Exit”
Thanks again for sharing this walk. I have spent some time wondering on the development of character, which comes into play in your last thoughts. I have some opinions on that and would enjoy being a part of that discussion. Thanks again and keep leading us on the journey.
I know laughter is probably not the reaction you were going for when you wrote this, but I SO clearly remember going to each and every doctor’s appointment after our diagnosis thinking THIS will be the one where we get some answers. Where I would demand answers, and would receive only the vaguest of answers. First with the neurologist, then the metabolic geneticist, and then with a different geneticist. It took me a bit longer to learn that there weren’t answers to be had. That the appointments served to help the doctor’s baseline Cyrus’s development so they could later make note of progress, more than there were there to help me make sense of anything.
Then I went back and read my own post about my reaction to these events, and found that it is amazingly similar to yours in a few key ways. Here’s the link if you’re interested: https://alightofmylife.blogspot.com/2017/02/celebrating-this-moment.html
I’m truly loving your blog. I know I have more reason to connect to your experience than many, but you have an incredibly powerful and relatable voice. Thank you for sharing it with the world!
Kari, thank you for sharing your blog with me. It’s so helpful to read things like that as we continue to make sense of this situation ourselves. And thank you for your kind words. As I’m sure you know first hand, writing about these things is extremely therapeutic. That’s obviously one of my unspoken goals here. But more than that, my hope is that something I say will help someone else, somewhere, do something better. Eleanor Roosevelt used to say “learn from the mistakes of others. There’s not enough time to make them all yourself.” So I suppose I’m trying help someone else follow her advice while doing the same myself.
You are most welcome. As you mentioned, half the reason I write is to process my own emotions. But I also do it to keep the family updated and in hopes that others on this journey will find it. I do love that quote.
I am speechless to what y’all are going through. I feel like anything I say will just sound cliche, and not enough. My heart is heavy for the unknown but also joyful that you have such a blessing in Willa.
Thank you for writing and being vulnerable in sharing your life, and feelings. I am challenged by every post, to be better person and, live a more meaningful life, so thank you.
Your family is beautiful!
Thank you for continuing to share your family’s journey. I hesitated before replying. I am not good with words and don’t want to sound trite or cliche. Just know that I will be praying for all of you.
There’s a concept in the hypotonia community – one inchstone at a time! Celebrate those inchstones. Willa has worked harder for them than any NT child has for a big milestone.
Thank you, Mark and Sarah, for sharing your journey with others … your writing is very informative to anyone who knows your family and to those who share a similar situation in their family. I offer my love and prayers to your family and please continue your blog. Love seeing pictures of your beautiful children,and my heart breaks for you and Sarah as you watch Willa struggle to achieve tiny developmental progress. My prayers for you and the family, we miss and love you all.
Sending lots of prayers