NavigatingLifeWithLMS

Join us on our journey as we navigate the rare syndrome world

Personal Hell

Gaze locked on the hot coals of the fire as flames of anxiety give birth to anger and fear. Dancing a mystifying dance to an unsettling song of a new kind of personal hell.

As the coals shift to settle and fall, I am reminded of how quickly the flame of three can swoop in and destroy even the most perfect moment without a seconds notice. Burning away security, safety, and contentment.

When the flames die down and the hot coals begin to cool, what remains will never be the same as before the kiss from the flame of three…anxiety giving birth to anger and fear.

Sitting by the fire one night, the words above came to me. I jotted them down, almost unchanged. This is but a glimpse of the dark hole I find myself in at times… anything but sunshine and rainbows.

The poem, if you feel the need to label the words above, came to mind and seemed to resonate with me tonight. Tonight, as I sit in this cold hospital room. As I sit and dwell on what is our reality…a part of my personal hell.

Why my personal hell you ask? Because I live in a constant state of fear that my child’s life could suddenly cease to exist. A “normal” childhood occurrence, such as a cold, could potentially go horribly wrong very quickly. Though unlikely, it is not an over exaggeration with the current circumstances with chemo meds, rare syndrome, already compromised immune system, etc.

My personal hell, in which I have to sit and watch my kid endure more crap than the average person could imagine. All while trying to remember this is her journey, I’m just here to love her through it.

I call these my anxious moments. My mind wanders to the darkest of place while the outer me is begging it to stop. The irrational and rational sides are duking it out. I’m just caught somewhere in the middle, lost and alone.

When it is all said and done the battle wounds will heal, but the scars will forever be left behind. For Kailanie, yet another hospital experience to add to her current hatred of the place. For me, the inevitable mom guilt that I cannot fix it all. What’s done, is done. Once burned, it can never be the same again.

There you have it, unedited and only slightly sugar-coated, real sh!t from a rare syndrome/cancer mom fighting demons from her own personal hell.

DON’T FORGET!

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