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  • Katie Smith

Wrong way

“God has mercifully ordered that the human brain works slowly; first the blow, hours afterwards the bruise.” ― Walter de la Mare, The Return

If you've never known loving parents, then the thought of losing your mom and dad will not resonate the same way it does for others. If you learned to hold a gun as a child, then certain amendments will resound differently in your mind than for those who've never touched a weapon. If you've lived your whole life with a disability, then typical setbacks feel minor compared to those who have always maintained all their capabilities.

Shock stings the soul like butter greases a pan. Give someone enough butter and the pan becomes a "non-sticky" one. Give someone enough shocks and the stings feel more like a baby's punch. We lose much of our natural humanistic adaptability when we force circumstances to match our preferences. In other words, when we drag our feet, kicking and screaming when our choices are interrupted, we only lose our footing. Yet, our feet will keep dancing, even when confined to a wheelchair, if our preferences are never part of our circumstantial story.

Our second son has never known a life without physical setbacks. As such, he rolls with most punches without as much as a hiccup. Recently, little Levi was diagnosed with another "minor" setback, Perthes Disease, a very rare, very inconclusive, condition of the hip found only in children. Little Levi has dealt with on and off pain for the last six months, and with such a high tolerance for pain, it was alarming to watch him begin limping this past summer. By God's grace, his orthopedic doctor was able to diagnose the disease after one x-ray last month. While there is much we don't know in terms of stages, progression, or treatment, we can pray that Levi remains mobile because the only way to protect his hip joint from deteriorating rapidly is to keep him sedentary. The word "wheelchair" was passively mentioned as a potential solution.

While it sounded alarming at first, it quickly wheeled off my own back because we've had many passive surgical procedures mentioned in Levi's six years on earth. None of them has been definite, permanent, or perfect, and not knowing the future is less scary when it becomes your norm. Thus, I felt more peace in this sting than I would have seven years ago. On the other hand, when it came to my own medical unknowns recently, I was disappointed at how little tranquility I had as compared to Levi's calm disposition.

After finally feeling normal from my August hospitalization, I found chunks and chunks of my hair falling out throughout the day the past two months. I'm not talking about the kind of hair loss after pregnancy, or even stress, but a crazy new kind that revealed my white scalp, and changed the texture and sensitivity of my head altogether. I wanted immediate answers or at least immediate aid. However, after blood work and other consultations, it was decided that I am probably suffering from TELOGEN EFFLUVIUM , which has become common after Covid.

I am probably more upset about how much I have cared about my hair than actually having it thin. My preference is to have a full head of hair, but the shock has begun to wean, and my mind is recognizing the triviality of my plight. While Levi and I are both experiencing new bodily changes, his deals with real pain, mine is just vain. I have never noticed as many chemotherapy patients with hair loss and wigs than I do now, and it is wonderful for me to let go of such an earthly matter. Whether my hair grows back or not doesn't matter. Instead I am getting a new non-stick pan for Christmas in order to help me keep dancing even if we are all confined to a wheelchair one day.

“I want to keep walking away from the person I was a moment ago, because a mind was made fo figure things out, not to read the same page recurrently.”

While our minds were definitely meant to "figure things out," as long as you are moving forward in fearlessness, whether by foot or by spirit, growth happens when you don't repeatedly rehearse your plight. Little Levi knows a beautiful level of trust in the uncertainty of discomfort, especially in bodily ailments, so he remains at peace no matter what rolls his way; that's a disposition I want to follow.... be careful yet careless = carefree


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