On Safari: Setting Intentions of Building My Caregiving Team

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by Katie Napiwocki |

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SMA caregivers | SMA News Today | Main graphic for column titled "A Wildflower in the Wheelderness," by Katie Napiwocki

I haven’t mentioned this to you yet, but I’ve decided to go on safari.

Wheeling through bristled grasslands and sprawling wilderness, I’ll breathe in the sights, sounds, smells, textures, and tastes of a new adventure. If you’d like to be my companion, come along with me on the first installment of this sun-laden journey.

I’m growing my caregiving team. Before crafting a team that suits my needs, I’ll need to escape to a world that offers me insight into the qualities I must consider before beginning to build.

Let’s kick up some dirt on this path of intention-setting. We’ll gear up in our finest safari hats and binoculars — there’s a lot to take in! 

Upon departure, notice the volcanoes rising against the distant pastel sky. They sweep upward like the altruistic giraffe stretching its graceful neck to grasp things that appear to be far out of reach. I ponder the necessity of growing my caregiving team, an endeavor that is eminent and crucial to my quality of life.

At the moment, it’s a minuscule trigon in the distance, cobbled of coarse rock and grit. I wonder if I have what it takes to bring forth something so grand. I channel the auspicious confidence of the giraffe.

We creep upon a pack of painted wolves frolicking in delight. Perched atop their heads, oversized ears play a distinct role in complex communication abilities. Their short coats are pieced together by rivulets of black coffee splashed with dollops of cream.

Painted wolves are beacons of inclusion, rallying around the sick and injured within their pack and expressing compassion toward those that need help. They hold each other’s well-being within their paws; in this, I am reminded of the incredible bond often forged by caregiving relationships. Like the painted wolf’s coat, I will piece together my team with good intentions, strong communication, and faith in the wild nature of unique undertakings.

Waves of warm air undulate through oatmeal grasses while zebras graze contentedly. The boundaries of their stripes strike a balance between community, selfhood, and free-spirited independence. Considering the zebra, I find affirmation in the notion that I can depend on others for self-care while also flourishing in autonomy. Counterintuitive as it may seem, I rely on others to experience a sense of freedom. 

In a snaking waterway, the keen eyes of hippos troll peaceful waters. Hippos are a symbol of calmness during calamity and the aptitude to see clearly through difficult emotions. In navigating this process of building my care team, I’m often overwhelmed by feelings of fear and worry. I channel the hippo. Though the future is unknown to me, I choose peace within my thoughts.

Amid the pride lands, lions pad a sanctum of shade beneath lone acacia trees. Icons of power and strength, I take note of the lion’s vibe. Even in a most unassuming posture, the lion’s energy emanates from its core. It knows it is a lion, and everyone else knows it, too.

In leading my care team, there might be times requiring me to practice a quiet ferocity of self-advocacy and ground rules. If successful, I’ll achieve it in a most beautiful, majestic way. I must remember that I am my own protector.

The day grows long. When the sun is a great ginger coin sinking into the burning shallows of a tangerine sea, ebony silhouettes of parading elephants move in steadfast wisdom across the plains. Elephants are the deliberately pokey afterglow of a brushfire that burns in perseverance, intellect, dependability, and integrity.

As I recruit new members of my caregiving team, I will seek those who display the lambent traits of the elephant. At times, I surely will feel discouraged, but I will carry myself in swift determination. 

After sundown, night moves over us like a boundless twinkling umbrella. My safari of intention-setting draws to a close, and I unwind in cool reflection of the hazy day in my rearview mirror.

My journey with caregiving is far from over. This adventure is not new to me, it’s merely evolving as my life changes. Caregiving has been a constant necessity across all seasons of my life. The conditions fluctuate, from drought-ridden and dry to rainy and lush. 

Growing a care team is a grueling effort, but it’s not a barren wasteland of lost hope. It’s a thriving ecosystem of unique opportunities and intricate dynamics between living beings — species as diverse as the features of an entire continent, yet bonded in the simple necessity of care, companionship, and survival. Together, we endure and bloom.

My anxieties and distress of caregiving matters drift through my mind like desert sands of time. I need only look around me for insightful perspectives. The sand is not sand at all. It is stardust that transforms the darkness into light.

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Note: SMA News Today 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 other 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 SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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