Charting the Unknown: Navigating the New Year Amid Uncertainty
Happy New Year!
Wow, she’s here, a brand-new year! I love the month of January because the new year feels all squeaky clean, fresh, and open to new possibilities. I also love this time of year because it seems to beckon me to consider what I dream and hope for in the new year. It comes with a pause to recalibrate. It’s an excellent time for establishing goals, setting intentions, and planning what we want the new year to look like or what we want it to hold.
But I’ve learned that as a rare mama, so many of my plans are ever-changing due to the nature of rare life. Find me in March when my son’s rare disease has thrown two months’ worth of curveballs, and see how I’m feeling then. I like to say that rare motherhood requires two things:
- Careful planning
- Total flexibility as all those carefully laid plans come undone
The needs of my son’s disease often send our plans astray, and though I’ve made my peace with it, it doesn’t mean it’s easy to navigate the balance of making plans and living a life with so much uncertainty. I don’t think this means we should give up planning and intention-setting altogether; I just think it means that we, as rare moms, have to do it with a different mindset. Over a decade of being a rare mama, I’ve learned a few things about flexibility and embracing uncertainties that I’d love to share with you in case they might help you, too. Here are some tips and approaches for navigating a new year amid uncertainty.
Create a Flexible Plan
Planning is like creating a roadmap for the year. There is so much value in thinking about where we are headed, what we are working towards, and how we want to spend our time. Whether we like it or not, life will come knocking at our door, pulling us in many directions. If we don’t get very clear about how we want to spend our time, life will fill it up with whatever it will. As rare moms, we don’t have time to say yes to whatever comes our way. We barely have enough time to care for ourselves and our families. So, we need to get strategic about where we put our energy and where we spend our time. That’s where our plan can come into play.
While it might sound like an oxymoron, a flexible plan is our best play. A flexible plan allows us to adapt to changing circumstances without feeling overwhelmed. Because life with a rare disease is so unpredictable, we must learn flexibility and stay nimble. We have to be open to detours. We have to learn to embrace the curveballs. Or maybe to even just expect them. Because, in truth, if we look back, most of us will say that curveballs are the constant. Change is the throughline of our stories. So maybe we should plan to become more flexible. Perhaps flexibility is the muscle we need to work on and develop most in this new year so that flexibility can be our superpower! And so that change doesn’t knock us out, but instead, dare I say, change is what we are good at! Maybe that’s one of the jobs of a rare mama–-to become flexible. We always talk about becoming resilient and how resiliency is essential in a rare mom’s life. But flexibility and resilience go hand in hand. Being able to adapt and think flexibly are vital ingredients in developing resilience. So let’s go ahead and set our goals and make our plans, but let’s be open to adjusting them as needed in this new year. Let’s build in the margin. Plan, but hold that plan loosely!
Stay Open to New Opportunities
Many of us navigate unchartered territories with rare diseases. In the world of rare diseases, medical advancements, treatments, and care protocols either don’t exist yet for our child’s particular rare disease or are evolving. Therefore, opportunities may come in unexpected forms, in unexpected places, at unexpected times. We have to be willing to embrace spontaneity and be ready to adjust our plans when opportunity knocks. Instead of fearing uncertainty, maybe we approach it with curiosity, treat each twist, and turn it into a chance to see if there is something new to discover. Perhaps we can reframe our viewpoint that there is room for new possibilities in a life of uncertainty.
Control What You Can Control
It makes sense that we are trying to control certain aspects of our lives. We are trying to help our children, and we are trying to uphold their health. We are trying to give our families the best life we can. But clearly, there is only so much that is in our control. So, to plan our year and live a life of uncertainty, one of the best things we can do is refocus our minds on taking action over the aspects that are within our control. Focus on solvable worries and take action on these aspects of a problem. By focusing on the aspects of an issue we can control, we’ll switch from ineffective worrying and ruminating to active problem-solving. There are many things we can control. We can control the amount of preparation for something that feels like a giant in front of us, such as our child’s procedure or surgery. We can’t control how the procedure goes or the outcomes, but we can control our prep for it, giving us more confidence and peace of mind going into it. We can direct our efforts. We can maintain our attitude. Controlling what we can control helps us feel less powerless and gives us actionable steps.
Practice Present Living
In rare life, it can be easy to fear the future. Our minds can go straight to worse-case scenarios or brood over the big looming questions. Some of these questions are so weighty, and all the “what ifs” accompanying them can drive our emotions off the edge of sanity. Focusing on the far-off can even paralyze us. Instead of letting our minds wander off too far, we can be purposeful in staying here and now. Staying focused on what is right in front of us can help us stay grounded and present. Not letting our brains get too far out to circumstances and situations beyond our control can help calm the chaos. Amid the uncertainty, we can find solace in the present moment.
Release Perfectionist Expectations
Life is far from perfect, and life can be chaotic and messy. Let’s just let go of unrealistic expectations, shall we? Let’s not compare our lives to anyone else’s because our lives are rare! They won’t look like anyone else’s, and we don’t need them to. If this life turns out differently than we expected, let’s release those expectations. Send them on their way. Let’s find our way, find a new way, set goals and intentions that serve the life we are living, bring joy to the life we have, and help us seek progress, not perfection.
Offer Self-Compassion
When plans go awry, we must remember we’re doing our best. We must treat ourselves with the same kindness and understanding we offer to others and the same compassion we offer our kids. If our goals and plans need adjusting due to unforeseen circumstances, then we adapt them with compassion for ourselves. Our priorities may shift, but that doesn’t diminish our worth or capability. Flexibility in our goals is a sign of resilience, not failure. When curveballs get thrown our way, and we have to adapt and change our plans and objectives, let’s not get down on ourselves but instead give ourselves compassion and know that we are doing our best given the confines of our situation.
Celebrate Small Wins
We are evolving and growing as we live out this life. Perhaps some accomplishments aren’t as significant and flashy as others. Still, there is no doubt that we’re making strides and achieving small wins in our character evolution and qualities such as resilience, compassion, patience, etc. Let’s acknowledge and celebrate these wins. They’re the building blocks of our lives, and they remind us of the progress we’re making.
Recharge and Reset
When faced with unexpected challenges, changes to our plan, or setbacks, it’s essential to take time to recharge. This is tough because when we get news we don’t want to hear about our child’s health or a change in the plan with their health; this can send us into a tailspin. It may require all kinds of follow-up on our part or add a whole new list of things to our plates. We must remember that during these times, our emotions are being sent into high gear, and to manage that, we need to take time to restore. During these times of change, building in time for extra sleep, quiet time, and time to process and reflect is crucial. We need these moments to work through changes, adapt, and gain strength to press on. Taking breaks is not a sign of weakness but a strategic move towards maintaining our well-being. So, build in time to reflect and reframe.
Now off we go, buckling up for the new year and charting a course for the unknown adventures ahead!
Happy New Year!
