Showing posts from May, 2018

Hopes, Wishes and Prayers...Oh My

I sit in my living room with the curtains pulled open, fixated on the burnt orange glow across the horizon as it muddles with the bright blue of the morning sky. Having endured many late nights and all-nighters lately, over the last six months, I can count on one hand how many times I have been awake to see the vivid colors of a sunrise or hear the little corner of our world come to life. Most mornings, as Chris kisses me goodbye before he begins his day, I am barely coherent as I utter, "I love you," audible in a way only he can understand. We are naturally night owls. However, Jayde’s POTS has taken that character trait to an entirely new level.  As my pillow and plush weighted blanket lulled me to sleep in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful Jayde's test will show she was okay, healthy, not in need of major life-altering surgery. The combination of the morning noises of the coffee maker, Chris in the show

When Giving Up Is Not An Option

There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth, much like a dam that has broken. The peacefulness of acceptance is waning today. Fortunately, my daughter and I are at opposite ends of the house, she is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of  words. Instantly regretting my emotionally charged outburst, as it becomes a cloud of guilt cascading over me like a waterfall. Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing the varying emotions, deep below the surface. Even when it feels almost impossible, somehow you learn to figure it out and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before I re-enter our home. A  few days before my outburst I sat in our living room, with my pho