Serendipitous Girl

A diagram from Dr. Rowe shows how Dysautonomia correlates and connects to most of Jayde's illnesses. Each trip to Hopkins is full of anxiety. We never know what will change or be discovered. Today's appointment felt like two lifetimes in the making. If I had to choose one word to sum up Jayde's appointment, it would be—validating. Growing up, my joint pains were written off as growing pains. My migraines were dismissed as mere headaches. I stopped seeking medical treatment because I could not bear to hear yet again, "We cannot figure out what is wrong," or "It's all in your head." Though medicine has advanced since my childhood, some doctors practice medicine, while other doctors specialize in medicine. When I realized Jayde was sick, I was determined my fate would not be hers. I refused to give up on her or allow any doctor to make her feel insignificant by dismissing her. Today was the culmination of all of that. Jayde's comprehensive exam with

Yesterday was National Coming Out Day. I cannot fathom ever forgetting the day Brady came out to me. If for no other reason than the importance of the event to my son's life. He was on his way home and called me, "When I get home can we talk?" His voice was heavy with apprehension and fear.  When he arrived home, he requested we go to my bedroom to discuss what was on his mind. I knew then this was serious. I braced myself for the worst. "Mom, I am gay." Not hesitating, I breathed a sigh of relief, "Ok." His eyes widened. He was in utter shock, "What? That's it?" "Yes. You are still the same sweet boy I gave birth to nineteen years ago. I loved you then, and I will love you until the day I die and even afterward. This does not change anything." The worst never came. Brady had lifted his anchor. I could see and feel this heavy burden drift away and disappear like a boat out to sea. Though looking back at those last words, his com

October 2, 2020  Talk about all the best-laid plans going awry. In my wildest dreams, or maybe nightmares, I never imagined this is what life would look like when I turned fifty. Prior to a global pandemic, which non-discriminately took everyone's lives, shook them upside down, and spit us all out with a new accessory that really messes with my lipstick, the plan was to usher in a half-century in my favorite seaside town of Isle of Palms and Charleston, SC. Unfortunately, it did not take long to realize, that was not happening! Several weeks ago, I awoke to a message from my mother, "Question??? What would you like to do for your 50th birthday? Is there any place special you would like to go/do? I have some ideas and thought I'd just come out and ask you." I did not need to think about my response, "If I could go anywhere, I'd choose Charleston. I want to wake up, be able to put my toes in the sand, and see, smell, and hear the ocean." Right now, Charles

  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

  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

 Yesterday was Jayde's first in-home IV therapy. Arriving to this day was not without its share of roadblocks, frustration, and chaos. I think what infuriated me the most was that our insurance covers 100% of everything. We have very minimal copays and exceptional prescription coverage. Yes, I know how fortunate we are. Since Jayde became ill, I am grateful every single day for Chris taking a job that we were not sure he should take. Yet, with 100% coverage, I still had to spar with several individuals, including the president of the Wellspan VNA. Our medical supplies person told me yesterday, "You are one badass lady." I laughed and replied, "I make no apologies for being a Momma Bear." What he said next left me saddened, "Yeah, but most parents would have just given up." My following response will clarify the sadness, "I can't give up because that would mean giving up on her, and that is not an option." A few days ago, I discussed healt