Pivot Principles for Families with Muscle and heart disorders

Let’s face it, for families who face chronic health conditions life doesn’t always go to plan. Over the years, my family has faced many decision points due to unexpected events like illness or medical issues. I was recently helping a friend talk through a necessary pivot when I realized we had developed “Pivot Principles” over the years that help us to navigate decision points. So, here I share them with you:

1. What INFORMATION do I need to make this decision? For example: Results of a COVID test after exposure? or What is the status of disrupted work schedule for needed caregivers? or Can I get a refund on that reservation? or What does our pediatrician think about flying with this ear infection?

2. WHEN do I need to make this decision? I found it SO helpful to make a deadline for a decision. This may include the option to not decide right NOW. For example, with travel, can I make this decision 1 hour prior to a cancellation/refund forfeit deadline? Mentally I find this so helpful even if it’s to chose – “I’m not deciding now” but to set a date/time that a decision is needed by. This helps reduce my stress level. Sometimes the situation “shakes out” in the meantime before a decision deadline.

3. Can I prepare in advance to pivot to a NEW PLAN go more smoothly if we have to change course? For example, can you make a second, refundable reservation for a future date? I find that have a future, alternative pivot plan is helpful – even if it never gets used and you end up sticking with your current plan. This mentally helps me get through the disappointment that comes with changing plans. It also has my family prepared and ready to adapt.

4. Acknowledge any disappointments, let go, and try to enjoy the new plan.

For example, high rates of COVID in our community prevented us from taking a planned trip that we were really looking forward to. We set a deadline to check the rate of transmission on a given date before our lodging refund deadline. When the decision deadline arrived, we chose to cancel our trip. We chose to reschedule for 6 months later, which gave us something to look forward to. We adapted by holding onto our time off of work, planning an epic “Staycation” that involved special take out food and visits to our local nature trails. We acknowledged the disappointment we felt from not going on our planned trip to our beloved get-away destination but focused on being together and creating a different kind of fun.

I hope these strategies help you as you enter this holiday season of travel and navigating potential COVID-19 exposures, colds, flu and more. Life will throw us curve balls – I hope you are armed and resilient to adapt.

Best to you all!!