Perseverance is not merely a word used to define an action, it is a state of mind, a form of being.
Roughly ten days ago Jayde attended a concert with her brother, Brady, and her boyfriend, Brett. We purchased the tickets in November; they were $13. We were not too concerned if she was unable to attend. Yet to Jayde, this concert was everything. She had been messaging with the band’s photographer. He had placed her on the guest list and was giving her a press pass to take photos. Her excitement was palpable. So was her stress, the week leading up to the concert. She was worried her POTS would make it impossible for her to attend the show…her fears were not unfounded. We dropped the trio at the venue’s door, then proceeded to dinner and a movie close by. A nice respite, even if it was short. Brady was a protective big brother, texting me throughout the evening, keeping me abreast of Jayde’s wellbeing. My biggest fear was having to retrieve the kids early and the disappointment Jayde would feel. When I walked into the venue, I saw Brady standing next to his sister. She was sitting on the floor with her head buried in her lap. It only took a split second of looking into her eyes to know we needed to get her home as quickly as possible. Except for the brief stop along I-83, Chris performed his best Nascar driver impression from Baltimore to Shrewsbury. For a few hours, she had been fierce and fearless. The price, she was up sick till 4 A.M. The next day she told me, “At least I got to be normal for a few hours.”
March 31 marked two years since Jayde’s POTS diagnosis. Before her diagnosis, we tirelessly fought to find the proper name of the invisible beast we were battling. I had this strange misconception that having a formal diagnosis would suddenly make everything better–more manageable. The only concept which has changed is, we now have the name of her illness. This presents its own host of problems. It still surprises me that two-thirds of the medical professionals we encounter have no prior knowledge of POTS' existence.
Monday was cardiology day. This is the day we see the gifted physician who diagnosed our Baby Girl; after spending only one hour with our daughter. Time to visit the man who informed us exactly what we were dealing with. Yes, I believe he is a genius. Why? Over a ten-year span, eight other medical professionals still could not comprehend or diagnose what Jayde was battling. Speaking of battling, I spent the last few weeks preparing for battle. Though I still considered this man a genius, our previous few appointments had plateaued. Jayde’s condition was worsening, but her treatment plan had not been modified. This led me to a futile search for a unicorn: a doctor who treated only individuals with Postural Orthostatic Tachycardia Syndrome and accepted new patients. As I stated, futile since the one such doctor at Hopkins who I think could treat Jayde, Dr. Peter Rowe, has a four-year waiting list and does not accept new patients. The POTS community has nicknamed Dr. Rowe the POTS Guru. My intuition and research tell me this is the man who can make a difference for Jayde. My frustration boils over; I begin to feel like we are hitting a brick wall at every turn. If I needed any additional determination to make my daughter’s doctor pay attention to her, watching her being primarily bedridden for the past seven weeks was just that. At my request, Chris met us at the hospital for our appointment. I knew a cooler head needed to prevail, he would ensure I stayed the course, and Mamma Bear did not make a grizzly appearance.
For me, the most enjoyable portion of every appointment is talking with the receptionist/nurse. We formed a bond five appointments ago. I have found Momma Bears tend to gravitate towards their own kind. I look forward to seeing the latest pictures of her two-year-old grandson and hearing about his latest antics. I knew I could be candid with her about my recent thoughts, and she would be honest with me on how to best proceed with Jayde’s doctor. Jayde’s cardiologist happened to be standing in the hallway, out of sight, yet still in earshot. Though I am uncertain if he heard my venting, this was not the worst possible occurrence. Thankfully, Mamma Bear was able to remain in hibernation. We have two new medications, a new treatment plan, some further testing to be scheduled, and hopefully, Jayde will soon be on the path to thriving…instead of merely surviving.
I’ve had some time to mull over Jayde’s appointment. Up until this point, nothing has worked. I have acquired my own invisible condition…mental and emotional exhaustion…it has simply become a way of life. We have tried all the recommended therapies…an abundance of salt, fluids, various medications, exercise, etc. This new regimen prompts concerns…IV therapy will only last so long before our girl needs a port. A port is not the worst thing in the world, but it does come with its own set of issues. My mind is racing. I know my brain needs a rest…though I am not sure how to accomplish that task. As I scroll through my social media feed, I spot an ad for a T-shirt. It reads, “POTS Doesn’t Come With A Manual…It Comes With A Mother Who Never Gives Up.” I laughed and cried simultaneously as I internally question “Big Brother,” listening to my innermost thoughts. It was apparent only a parent battling POTS, alongside their child, could have created this T-shirt. Though I firmly believe, in a world full of parents who are fighting to help their child persevere through life with a chronic or invisible illness, this quote could apply to each of those many parents. Life does not come with a manual…if, at first, we don’t succeed…try, try again.
I have resolved myself to the idea…nothing happens overnight, slow and steady wins the race and in the end, perseverance will pay off.
The ultimate prize…my beautiful daughter regaining any semblance of her life.
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