How are the children handling this? (11/12/24)

 In the moments of terror that followed our initial diagnosis, the first thoughts that Joyce and I had were about our children and their future. When it comes to parenting, there are a few truths I have learned along the way:

• You are only as happy as your most miserable child.

• Your children will face pain and suffering. Sometimes it will be a consequence of your parenting.

• "Parenting experts” are divided on what your mistakes were that led to your kids being messed up, even when it comes to the most fundamental of topics like whether you should spank your child. I know this because I have read a lot of parenting books.

In the midst of so much uncertainty, there have been moments during the past week when it was far from clear to me that we were ever getting Joyce back on an airplane again. I still don’t know for sure that we’re going to get to that place, although I’m slightly more optimistic each day as I see her regaining her strength. Today she ambulated to an appointment for the first time, and I just heard her rate her pain as a 2!!! We ruled out the option of updating the kids over FaceTime pretty quickly, so pulling them out of school to join us in Minnesota over the weekend became a necessity.

It's at this point that I really need to give a shout out to some of the people that have come to the rescue of our children at a moment when we were unable to provide even the most basic care to them. Ellie Laborde (Joyce’s mom) landed in Idaho Falls so fast that I’m still not sure she didn’t perform a pararescue jump out of a helicopter to land in our driveway. For what must have been five brutal days, she managed her own grief without revealing the gravity of the situation to our kids. My recommendation would be to avoid getting involved in a game of Texas Hold ‘Em with her if you can at all help it. Once the kids arrived in Minnesota, my sister Sheri and her husband Dave took over the process of educating our children by setting up a homeschool in their living room. Sheri, who is a pediatric intensivist, also provided us with a library of resources on how to approach the initial conversation which I promptly consumed.

Despite my diligent preparation, I had no idea how fast that conversation was going to go deep. After a few softball questions like “Is this something that can be cured?” they started hitting me with lines of interrogation around topics like whether or not I planned on getting remarried if Mommy died and what sort of screening protocols were going to be available in 20 years when Lucia was at risk for this disease. In the end, it was an incredible relief to discover how resilient these two kids are.

I’ve been reading Jonathan Haidt’s newest book, “The Anxious Generation” in which he describes children as “antifragile,” meaning they actually benefit from adversity in their journey to adulthood. Like trees that require heavy wind to activate the gene expression needed for healthy growth or the immune system which requires antigen presentation to be effective, children actually benefit from encountering the harsh realities of life from time to time no matter how much we as parents would prefer to protect them from any form of discomfort if that were an option. Nevertheless, there’s a difference between getting bullied on the playground and having a school shooter in your classroom. The research is pretty clear that this type of stress can lead to significant psychiatric and physical illness later in life. Our difficult task in the years ahead will be to help Lyle and Lucia turn their suffering into a “life story that integrates the events of life into a ‘coherent and vitalizing’ narrative. People who have never suffered are likely to have naïve stories about life’s meaning.” (TK)

I will end by expressing my deepest gratitude to the hundreds of people who are currently praying for us in churches, temples, and synagogues all over the world this week. I will do my best to relay some of the many small answers to those prayers, even as we all continue in our petitions for THE BIG ONE!! On the topic at hand, God provided the following encouragement in the form of a message from one of my medical school classmates: “You might know that I am a child, adolescent, and adult psychiatrist. I did my training at MGH/McLean after med school. I did an additional faculty fellowship with the MGH PACT (Parenting At a Challenging Time) Program, and then worked with this team on faculty. The PACT program focuses on helping parents diagnosed with cancer (or other serious medical conditions) to navigate this journey with their children. Please let me know if something like this would seem helpful to you and Joyce.”  Another resource that my sister brought to our attention is an organization called “Inheritance of Hope.” We are only beginning to scratch the surface of the extensive resources they have for people in our situation, but we are so thankful that others who have walked before us on this path have taken the care to smooth out the trail even a little bit so that our children don’t stumble and fall along the way.