Happy New Year: Come What May

It’s here! Another new year. And every year around this time, like many of us, I start to think about the fresh new year ahead and what I want to accomplish. I have a little goal and intention-setting ritual that I’ve done for the last couple of decades. But this year, my entrance into the new year feels like more of a slow toe-dip into the 2022 waters versus a backflip off the high dive, headfirst into the deep end. Blazing in harder, faster, stronger, and better is not what I’m feeling in the slightest. Striving, chasing, exhausting, burning, controlling—NOPE!  

Yes, I will think about my intentions and set my goals, but where I really want to channel my efforts are in how I will mentally approach the new year. As we’ve all seen in the last couple of years, we can make our plans and set our goals, but countless circumstances may come our way and change them.

This is much like rare-disease parenting.

My child’s health has thrown us curve balls left and right. He had an unexpected surgery just this last year. A shift, turn and change to our plan. This is how rare life goes. And though at the start of each new year, I feel like yelling out, “Hey, it’s a new year, can someone please inform my child’s disease that curveballs are not in our plans?” I know better.

Now, I am by no means a pessimist or a cynic. I fight hard not to be jarred and jaded. I remain a dreamer, an optimist, and a hope hailer. And I’m gonna keep right on being all those things because I like them. But I also know to stay grounded in reality. I live in the real world, the real rare world specifically. Reality is everywhere I look. But I think reality and hope can exist together, and in my opinion, they’re a pretty powerful combination.

So here’s the harsh truth, things are not going to unfold according to my little personal plan. Can you believe this? I know. And you should see this plan; it’s really damn good, if I do say so myself.

Delays are going to come, as are disappointments and derailments. Now, that doesn’t mean I am going to stop planning and setting my intentions and goals. Goal-setting helps me keep growing and learning. It keeps me from staying stagnant. Planning helps guide me through the chaos. It allows me to manage the never-ending to-dos. It gives me some sort of semblance on this winding, bumpy road. But I’d like to work on how I mentally handle shifts, pivots, and complete crap-hitting-the fan changes to my plan. A girl’s gotta get her head game strong.

Now don’t get me wrong, just like you, I must move with all the changes because that’s what rare-disease parenting requires. But I can’t say it doesn’t take a toll on my mental well-being. Often, I’m physically and systematically moving through the changes, all the while brooding and steaming on the inside. So it has me thinking about how I can better mentally and emotionally navigate change.

So what I want to focus on more than anything as I enter this new year is how I will face the inevitable changes to my little plan. How will I weather the shifts, turns, detours, and off-road adventures? How will I manage potential delays, disappointments, and derailments? How will I manage my frustrations?

Will I let them stress me? Will I let them exhaust me? Will I let them run me? Burn me out, eat me up inside, push me to a speed I can’t sustain? Change who I am?

Can I be more flexible, nimble, and adaptive not in just my execution but in my actual attitude and emotions? Can I learn to flow through change?

I’d like to set my goals and make my plans and then hold them with an open hand instead of a clenched fist holding on too tight. And I’d like to decide right now before all the curveballs start coming, not to lose my faith, hope, strength, joy, or myself altogether. So in addition to all the plans that I’m making, perhaps even more importantly, I’m making a declaration to myself:

I will remain steadfast in my faith, come what may.

I will take care of my health, come what may.

I will love big, come what may.

I will keep my eyes open to the beauty in my life, come what may.

I will breathe deep, come what may.

I will ride the rare ride.

I don’t know what this new year holds but I know who I am and I know who I want to be. So I’ma stay true to the best parts of me. Come what may.

Okay, I’m off to make my new year’s plan, unless, of course, something comes up on the way. Then I guess I’ll make it another day. (sigh, come what may!)