Showing posts from September, 2018

Just Breathe

Chris was on his way to deposit some checks into our bank, so I could book a house in Charleston for two glorious weeks. Afterward, he was picking up pizza for his little princess, and I was steaming shrimp for the two of us. Jayde-Rhiannon  and I were where Chris left us, lying across my bed talking. I was going to take a quick shower, Chris was going to come home, and the three of us were going to spend a quiet evening together. Not five minutes had passed since he kissed us goodbye and walked out the front door. My text alert sounded, "In an accident. Car totaled." Within an instant, with one text, everything halted to a standstill. The following text gave his location. After that, he stopped responding and did not answer my phone call. I flew into my infamous crisis mode — autopilot. My body rapidly pulsing from head to toe, as if someone had injected me with a giant dose of adrenaline. I silently prayed, trying to stop all the thoughts that began racing through my mind.

Though She Be Little She Is Fierce

We have traveled full circle, bringing t he three of us back to where our journey began five short months ago. Coming to Hopkins has become a family affair for me, Chris, and Jayde-Rhiannon. As I observe Jayde carry herself through the hospital, I marvel at the beautiful creature I call my daughter. I have never met a woman as strong as my Baby Girl. I am proud to be the Mother of such a fierce little warrior. On this momentous day, i t is difficult not to feel many emotions. Yet, the strongest emotion pulsing through me at this moment is gratitude. Grateful Jayde has seen significant improvement. I am thankful for this brilliant doctor who did not dismiss my mother's intuition or Jayde – as too many did in the past. Today she was given the thumbs up from her doctor to test her new stomach created by the DDJ surgery performed not quite one month ago. One of Jayde's favorite forbidden foods is burgers, not the McDonald's or Burger King burgers; she likes the real deal. Her f

When Did Test Scores Become More Important Than A Child's Wellbeing

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