How creating a strategic plan is helping me navigate life with FA

I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment.

As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA), I know that life will sometimes pull me off course. But this feeling was more than that. I’d lost sight of the bigger picture of my life and needed a plan to ground myself. Yet here I was, teaching my clients to engage in a process I’d stopped doing years ago: strategic planning.

I love creating a strategic plan. Actually, I just love planning. I derive energy from mapping out a direction. But in managing my daughter’s care and dealing with her FA, I’d become completely mired in the day-to-day. That’s OK in a time of crisis, but four years post-diagnosis, I was longing for something different. I needed a reset.

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I started at the beginning. The first step in any strategic planning process is to understand the core values of an organization, business, or individual. These principles lay the foundation for what we believe; they’re our anchors. I want to go through life with my actions rooted in what’s significant to me; I don’t want to drift. Core values are different from who we are as people (that’s a different column for a different day); they’re what we stand for.

My core values are how I choose to show up in life, what’s close to my heart and fills me with passion. One of mine centers on relationships. I believe they’re a healing force and at the heart of all I do.

The process

There are many ways to determine core values. My favorite is a mind map. Like most people, I’m a nonlinear thinker, so I need a process that allows me to stop and start. A mind map is perfect for that.

In the center of a piece of paper and with my favorite pen, I wrote my name. Then I processed. I asked myself to think about what brings me joy, what fills me with passion, and what I care about. As words, experiences, and concepts came to mind, I wrote them down in the four corners of the page, trying to keep similar topics or themes together. I didn’t do this map in one sitting. I gave myself time to process, leave, and return.

I ended up with two other constellations of topics on the top and bottom of the page. That gave me six total groupings, and I asked an important question of each one: What does this grouping tell me about what I find important?

I took the answers for each group and converted them into six short sentences. I had a list — one I read through with a smile and a full heart, finally becoming able to say, “Yes, this is what I value.”

Now the real work begins. I need to ensure that I’m staying true to these six things and investing in each of them.

This list, these values, may change over time. New life experiences bring new lessons, and I want to remain open to that. As one of my mentors always said, “It is easier to edit than create,” so having a starting point with this list is a good first step.

Staying true to my anchors

One of the best gifts I can give myself in this journey as a parent of a child with FA is to stay grounded in who I am and what I value. It can help guide decision-making and remind me of where I want to be investing my time and energy.

FA will always cause loss of balance — in many ways. Misalignment will happen; it’s a part of life. When it does, I’ll work to provide myself with lots of grace. I’ll go back to my core values, my six anchors, and remind myself why these are the things that are significant to me. Then I’ll take a deep breath, center myself, and, when needed, recalibrate.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.