Serendipitous Girl

October is Dysautonomia Awareness Month, and October 25 marks the annual POTS awareness day. Just as no two journeys are identical, the path to a POTS diagnosis is different for each patient. However, as Jayde-Rhiannon and I have discovered, the lengthy road to a diagnosis is usually full of speedbumps and hairpin turns. A month shy of turning forty, I had a total hysterectomy. It was a necessary evil. While taking care of certain parts of my health, my surgery threw me headfirst into menopause overnight. Menopause really should not be a taboo subject. If it weren't, maybe I would not have been surprised by the alien that took over my body, but that is a subject for another day. Insomnia and hot flashes were the worst and lingering side effects of my body laughing and shouting, "You are no longer in your twenties." However, on the plus side, I was told the migraines I had experienced since I was six should see a drastic improvement. Thankfully, they did. Gone were the two...

April 19, 2022 It's all a part of the journey, her journey. Compliments of Brett's family, this time tomorrow, Jayde and Brett will be in Chicago. For the first time, Jayde will be flying while accessed. Mama Bear is excited for her yet terrified. It was a rough morning. She has her gummies to help with the pain, nausea, and anxiety while flying. Here is hoping her experience with the TSA is better than when we flew to California, and they do not grope her port again. April 20, 2022 Thank you, everyone, for the comments on my prior post and texts from my dear friend checking in on me last night and this morning. This is Jayde-Rhiannon's first significant trip and flight without us. This morning, Brett's mom, Nicole, drove them to the airport. Then, TSA Cares ensured they made it through security without incident. No groping was involved. Jayed and Brett arrived in Chicago before 1:20 our time. For the next five days, Jackson and I are empty nesters. Have a blast, my ...

A diagram from Dr. Rowe illustrating  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." Although medicine has advanced since my childhood, some doctors practice medicine, while others specialize in it. 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 ...

  *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, feeling 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...

She is graciously composed. Inside, dying to scream at someone. Anyone. The entire world. Her misty eyes speak a thousand words. Words only I can hear. Though she is hesitant, she is learning to speak out, allowing her voice to empower her. When she cannot, I am her voice. I am her advocate. There is nothing I would not do to remove her pain and the torture of the many tiny needles. The nurses fully adopt the mantra, if at first you don't succeed try, try again. It's time to bring in the backup nurses. This is where I pointedly remind my seventeen-year-old, in front of the frustrated crew assembled before her, "This is YOUR body. Only you get to decide when you've had enough." Today, it only took three nurses to progress. This is why an IV team is necessary. It will not be long before clouds of blue and purple reach the surface of her translucent skin, another blunt reminder of her body's inadequacy. She stares out into nothing as the music plays on. For today...

I am lying in bed, trying to wake up. I grab my phone and browse over my calendar. The last few months have been a whirlwind. I have always relied heavily on my phone's calendar. (Yes, I was a Blackberry addict in the early days.) Although lately, it would be impossible for me to tell you the day of the week without my phone's assistance. I am submerged in a deep haze. Our schedule for the next ten days is overwhelming. What was I thinking of scheduling two major doctor’s appointments on the same day?!? The simple answer—I wasn't. To the Super Moms who do it all, are beautifully put together, your homes are clean, and dinner is on the table at 6 P.M. every day—I applaud you. I also wonder when you sleep and if you are actually human. My feet hit the floor, yet all I want to do is crawl back in my bed, pull the covers over my head, and sleep away the grief. I am silently praying when I wake up, this ache in the pit of my stomach, and the accompanying heaviness that begins fr...