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Why I Fear I'm Not Enough As I Care for My Child's Rare Illness

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The grass was long and uneven; weeds grew thick and straggly in the landscaping. The sight got under my skin like the tiny bits of hot sand from the driveway that worked their way in when I decided not to wear shoes to run and grab the mail. The asphalt burned underfoot; I concentrated on its heat to distract me from the messy exterior, but more so to distract me from the intensity swirling within.

I wanted to tear at the plants, ripping them away until our house looked manicured again. I wanted to return inside to a home that was orderly and neat. There was a rising scream that filled my chest like the steam expanding in an over-full pressure cooker heated too vigorously, but it never escaped.

Our life is unseemly and wild like the weeds that grew in fits and spurts crowding out the manicured beauty of the landscaping. It is hot and bothersome like the asphalt with little sand rock pebbles that pushed and singed. But none of that exterior change would change anything. In the end our fears are generally not about that which is without but that which is within.

I fear I am not enough to parent the extraordinary and tame the wild.


They are within me and with out me; I grew their tiny bodies inside of mine where they shed cells that will forever circulate within me. Our relationship is soft and silky yet impossibly strong, like an invisible cord that tethers us to each other.  I’ve relied on this bond, read the small telegraphing movements of the cord, since before they drew their first breaths. The bond is strong and primal, as old as the mother-child relationship itself. I trust our fettered souls. They have changed me at a fundamental level.

Yet, I do not trust myself — that I am enough, that I can do enough, that I love enough, that I see enough, that I have fought enough, that I have done enough, and that I will be able to save her. That I will be able to save her. The rising scream that filled my chest was born the day I was first introduced to the words “tuberous sclerosis complex.”

When fear looms as large as the weeds ready to overtake my hedge, I must remember, that my tether is to my children and not the incurable disease that has ravaged our girl. There is no way for one person to be enough in the face of all of that.

But, there is one thing that is enough in this world, and that is love. It is that which wove the cord between us. 

If only I breathe and approach it all with love, the fear will lessen.

And someday I will feel safe enough to release the sobbing scream that keeps me chained to the fear.

This story originally appeared on On Joy and Sorrow

Originally published: October 23, 2018
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