Some Things in Life You Cannot Prepare For

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 about." She tears up, exclaiming, "Yeah, but I am eighteen years old. I should be able to take care of myself! I should be going to college and have a job!" Chris chimes in, "Except most eighteen-year-olds still cannot care for themselves and are healthy. You are more self-sufficient than most kids your age." He is right. Even though she heavily relies on me for her care, her journey has matured her in ways you never envision for your child.

Later on Saturday night, I frantically gathered everything Jayde and I would need to make our stay at Hopkins more comfortable. As she approached me in the kitchen, I could sense the anxiety dripping off of her like beads of sweat from the hot July sun. I stop what I am doing. To distract both of us, I begin filing and buffing her nails. "I am scared," she whispers. Pausing to look up at her, I do my best not to blurt out, me too!  "I know, but you and I are going to get through this like we get through everything—together. We go in together, and the only way we leave—is together. I don't come home until you come home." 

There are just some circumstances in life you can never prepare for. As I continued packing and checking off our list, trying to prepare us as much as possible, I thought back to the day after Jayde's eighteenth birthday. Chris, me, my parents, her, and her boyfriend, Brett, sat in a notary's office filling out paperwork, giving me medical power of attorney for Jayde. In my mind, the POA was an insurance policy to be used in case of an emergency. Yesterday, that emergency occurred, and I proudly handed over the several-page document, which allowed me to stay by her side until we come home.

Last night, as she attempted to rest, I curled up in my little corner of the room, quietly allowing myself to feel a plethora of emotions. I am angry, I am sad, I am frustrated, I am concerned, I am scared. I am also grateful for a piece of paper that allows me to be here with my beautiful daughter instead of forcing her to be all alone in a hospital room.

The city never sleeps, causing me to miss our quiet little town even more. Jayde barely wakes from the 4 a.m. round of vitals. The two helicopter landings on the neighboring roof do not phase her slumber either. Around 5:30, the X-ray technician came in to scan her port. The bright Baltimore sun now peers through the sides of the window shade, signaling a new day. The surgical team begins making their rounds. Her doctor will soon be up to visit. In a few hours, Jayde will undergo her first test. As much as we need answers, the options are not great. The day is full of possibilities; right now, all I can do is hope for the best.


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