Serendipitous Girl

I was feeling an abundance of frustration this morning.  Jayde has missed a great deal of school during her educational career. However, her absences have ALWAYS been supported by doctor's letters. Still, with all these absences, she has managed to maintain her grades. I swore I would never do this, but after today, I am ready to yank Jayde-Rhiannon out of SYCSD and homeschool her until graduation. Apparently, a letter from Johns Hopkins Hospital was insufficient to explain why Jayde is not starting school yet. Simply because it was signed by her nurse. Even though that is what Jayde's surgeon instructed us to do, and even though this is more than five formal letters from Jayde's medical team informing of her medical condition in less than a year. Maybe I should attach pictures of her hooked up to all her tubes and equipment with the latest letter. Out of the mouth of my babe this afternoon, "I don't know why you bother to try and educate them about my illnesses. T...

My human bay doll at 6 months 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 that Jayde's test will show she is okay, healthy, and not in need of major life-altering surgery. The combination of the morning noises of ...