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A letter from Spring

Dear ones,

I know you think me gone forever.

Tire of windwhipped ears, frozen fingers,

numb toes dancing in boots to regain feeling.

I noticed your hesitation at the door, a pause to brace yourself before… 67 more words

Living with Chronic Pain

One day I’m cheering and dancing at a Mavericks game, that night I’m crying in agony as my boyfriend rushes me home. One weekend I’m running around a Tulip Farm or laughing at Dave and Busters. 395 more words


Words of Encouragement 

Unloved, friendless, resentment

Unoccupied, complacent, tormented by the past

Weak, anemic, swaying crazily as light breeze passes
Diminished, discouraged, decimated
Inarticulate, unwise, revolting reflection

Shameful, embarrassed for existing in this state
Competed, defeated, crumbling


Earrings in Heaven {World Rare Disease Day 2017}

“Mom.  One day, when I have good skin all over me, I can have earrings, right?”


Because, truth is, unless there is a radical gene-altering cure found, EB is a part of who she is, and will be a part of who she is for all of her days.

868 more words

No Boxes Included

I’ve always liked small things. Itty bitty containers. Pocket-sized purses. Tiny tea cups.

These days, my life is filled with meetings and marketing during the day and three sets of tiny hands at night. 232 more words