Serendipitous Girl

  This morning, Jayde-Rhiannon and I spent an hour and a half with her primary care physician. During a phone call with my mom on Tuesday night, she inquired about Jayde's upcoming visit. I told her, "If you hear an explosion from the Cracker Barrel area of town, no worries, it is just your daughter." She laughed but wholly understood. Thankfully, there was no big explosion, just two much-needed mini outbursts, one from Jayde, the other from me. After Jayde informed her doctor, she did not feel she was receiving proper care. I went into great detail regarding the mismanagement of her health by almost all the physicians involved. I finished with, "I am watching my daughter wither away right before my eyes. Either you will be the doctor who figures this out while helping her heal, or we will find a doctor who will. If this is out of your scope of expertise or you are too booked to take time to focus on Jayde thoroughly, please speak up so we can find someone willing

  I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. Sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out at all hours of the day and night helps keep her current circumstances in perspective. Regardless, we know she is where she needs to be to receive the best possible care. To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last several months. In hindsight, it probably st

  *Update from the 10th floor* From the windows of the 10 th  floor, I watch from above as the world continues to turn. People are living their lives, and I continue wishing that, against all odds, my daughter was one of those people. How do you help someone who is losing the desire to help themselves? How do you force someone to continue to fight when they have fought so hard, for so long, that the fight is all they can now remember. In healthcare, there can be no shortcuts. It is a long, exhausting road. Today, this is where we are. A hospital is the last place any parent wants to be with their child. I want to see my daughter dressed like a princess, going off to her senior prom. I want to see her driving off while experiencing butterflies because she is finally driving. I want to watch her walk across a stage and be handed her diploma. Covid did not postpone these events in her life. POTS, EDS, and SMAS have stolen these milestones from her past and her present and threaten

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