I recently ventured on safari with my heart and soul to take a look around at what growing a caregiving team means to me.
My intentions established a touchstone from which I can construct a hospitable living space for change and growth. Now that perspective has been gathered and intentions are planted, sprouts derived of germination have begun to tickle the soil — this is where the action begins. This is where the roots will stand their ground and thrive.
If you offered me tools to build anything in the world that I could dream up, I would choose to build an accessible treehouse near one of my favorite hiking trails. Before building, I need to draw some blueprints, gather supplies, and pick out a mighty fine tree to serve as my woodland high-rise.
I wheel up to my drafting table. Rolling out the parchment for my blueprints, I determine my needs in ink. I am the architect of this grand turning point in my life.
I haven’t managed a multimember caregiving team since my college days. For over a decade, I’ve relied on one or two people to help me remain active in daily life and perform self-care tasks that are so simple yet essential to my health and happiness. As a creature of habit and routines, I’ve appreciated the consistency of the motions over the years.
In some ways, the variability of my needs has been lost on me with each passing sunrise and sunset. By relying on one person for everything, the daily groove of caregiving flows with the predictability of a babbling brook. I give myself permission to go back — to be a beginner again, embracing the childlike wonder of the forest. I give myself permission to draw these blueprints in graphite instead of ink. Rather than focusing on clean, crisp lines of perfection and permanence, I’ll begin with wisps of resilience and broad strokes of open-minded adaptability.
Components of my blueprints have involved a process of work akin to a full-time job. I’ve advocated for comprehensive hours that cover the scope of my daily needs, as well as fair and appealing wages to attract dependable employees to my new team. I’ve written ads — both casual and professional — to circulate on social media networks and at local universities and healthcare facilities. I’ve drafted interview questions by considering the type of synergy and dynamic that works well for me in a caregiving relationship.
The construction of any quality project requires a handy set of resources. I set my blueprints aside to stretch my limbs, breathe some fresh air, and take stock of my toolbox.
Because I haven’t managed a sizable caregiving team in quite some time, I’ve felt inadequate and self-conscious about the breadth of my toolbox lately. I’ve compared my toolbox to that of my friends with SMA who are marvels at steering the helm of their large teams.
Like tree branches reaching out to one another in networks of friendly foliage, I’ve opened up to several of my SMA friends about my fears and changes. Without an acorn’s weight of hesitation, they unlocked the lids of their own toolboxes to me.
Along an intricate system of ramps, pulleys, and metal buckets for supply transportation and communication tactics, they’ve offered advice and guidance in the development of modeling my treehouse. Because of their generous spirit, the equipage of my toolbox has grown tenfold, furnished with knowledge, insights, and firsthand experiences.
Now, I choose a magnificent tree upon which to build — one that opens its great leafy arms toward the sky, with tree rings etched in restless echoes by the artistry of clock hands. My thoughts will expand in vast circles, considering the entire forest grove.
A mighty support system, my treehouse will come together in delicate hammer swings, layers of shingles, and rows of wood planks — all fastened together by diligence, creativity, and compassion. I will measure once, twice, three times and more. It will be an undertaking assembled of compounding increments, various steps, and workers who see the humanity in me.
I may be the architect, but I cannot build anything without a talented team of workers.
This collaborative effort will yield a treehouse withstanding of all seasons. In a lush moor, where a gala of morning dew sways on the dance floor of glistening toadstools, swirling ramps will lead to the threshold of respite’s doorway. Mammoth sunflower heads will crane their necks to peek through windows on a Sunday afternoon, listening intently to page-turning stories read aloud from the books of a rare library.
With my blueprints and toolbox, I’ll take initiative to forge connections that flow in congruence with spirit of the forest. In campouts of pillow forts, telescopes, and treasure maps, I’ll dare to aspire toward sky-scraping treetops.
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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