Serendipitous Girl

  The elevator speaks with the sweet voice of a child. The brightly colored art is familiar, like an old friend. While we walk in together, as we have countless times before, she voices, "I am nervous." "I completely understand. After your last experience several weeks ago, of course, you are." She expresses her anxiousness again as the nurse asks questions and takes her vitals. I assure her, "Momma Bear is here. We've got this." Sadly, this was once the only place, other than home, where she felt comfortable and at ease, where people did not stare, question, or judge, and where she knew she could be among her own kind. That all changed six weeks ago. After the echocardiogram was over, I geared up for battle, much like I did a few years ago, right before Dr. Brenner sent us to Dr. Jelin. I straightened my back as I rolled Jayde into the exam room. After the pleasantries with Dr. Brenner, I proceeded to tell him about the past nine months and how Jayde ...

Another Update from the 10th floor Covid has eerily slowed the pace, yet the smells, sights, sounds, and walls are all too familiar. The body remembers what the mind attempts to bury. The memories prompt an unnerving yet comforting feeling. I believe Jayde will receive the best possible care in this building, though, after years of fighting an apathetic medical system, my guard is impenetrable. Early in the day on Saturday, Chris, Jayde-Rhiannon, and I were having an emotional conversation. Jayde has not been doing well since last Fall. Every bit of weight she gained after her SMAS surgery, and then some, is gone. Her heart rate, which was once stabilized by her medication, bounces from 55 to 185. The pain she encounters every day has become unmanageable, even with medication. Now weighing 88 pounds and feeling relatively weak, she relays she feels guilty that I still need to take care of her. I responded, "I am your mom. This is what I do. You have NOTHING to feel guilty abou...

  When Jayde was a baby, Chris thought pink was too basic a color for her. His favorite color to dress her in was a beautiful shade of lilac. Who knew then that the color purple would become so symbolic? It has been a challenging year in the SMAS community. We've seen too many warriors succumb to this disease. Each death is a stark reminder of the anguish this illness can inflict on its patients and their families. A few days ago, I was candidly discussing the severity of Jayde’s health with my mother. I explained my latest concerns over the two types of SMAS – acute and chronic. The long-term prognosis for acute SMAS is far better than that of the chronic type, which Jayde has. Acute SMAS is a sudden onset from a dramatic weight loss due to illness, surgery, or injury. This type generally responds better to conservative therapies or surgery and, in time, heals. Chronic SMAS is a long-term form, usually diagnosed once the symptoms are too severe to be ignored by doctors and sad...

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'm sure I am biased, but 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. ...

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...

This morning, I awoke with thoughts of the last several days rolling through my mind. Jayde-Rhiannon 's final day in the hospital, my best friend asked me while visiting, “What do you do all day?” I responded, “Take care of Jayde, talk to doctors, fight with nurses who don’t listen, take care of Jayde, talk to doctors, and take care of Jayde.” Sounds kind of boring, right? Jayde and I spent seven days together, sleeping a few feet away from each other. We did not watch movies or TV as we had planned. I turned on my laptop twice for a total of one hour. I took several magazines and two books, they remained in the suitcase. I began the Facebook updates on my phone because it was easier to make one post than answer twenty or so texts and phone calls. The posts also freed up more time to concentrate on Jayde. When she finally regained her voice, we talked a lot. The silver lining of the entire experience…because I always need to find one…was the quality time with Jayde. If we were sitt...

I sit in the peace of the dreary morning as the sun rises over the city, casting my gaze toward the sight of the open water and bridge. This site has quickly become my mental escape from the 10th floor. If I look straight out, my view is the city as far as the eyes can see. However, if I snuggle comfortably into the corner of my sofa, I see a vision of tranquility and boats setting out to sea. The only sounds in the background are the hum of Jayde-Rhiannon's medical equipment. I silently pray for a better day, one which is filled with peace. Knowing in my heart that my baby girl needs respite from yesterday's disappointing news and lackluster care, Jayde is soundly asleep. The past few hours have probably been the best rest she has experienced in almost a week. I slink back down and become one with my pillow and plush blanket. When I awake again, it is nearly 8:30. Jayde's new nursing team, Tina and Taylor, are introducing themselves to me. Today she has two nurses...attent...