Serendipitous Girl

  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, 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...

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...

There is no rhyme or reason. It is 4 A.M, and I sit on the floor beside her, rubbing her back. Except for just being here, I am helpless to make any real difference at the moment. I am the best friend who holds back her hair, except this is not from some stupid self-inflicted debauchery. This is her life. She has chosen to make her bed on the floor. I contemplate doing the same to be closer to her. The regular companions snuggle in around her. They are familiar with what the sounds mean. She is finally asleep in her bed. I check on her one last time. I pull the blankets up to my chin. It is now 7:20. Jayde's bathroom and trash can are once again clean—hopefully, for the final time. The laundry from the night's episode lies in the hallway. It can wait until later. Chris is peacefully asleep. I envy my sweet husband's ability to sleep/snore through anything. The episodes are becoming more frequent. The respite we enjoyed for a year seems like a distant memory. She has started...

 As I observe my little sister, a combination of adoration and envy washes over me. After an evening of floating in our pool, my nephew is peacefully sleeping in her arms. You can sense his pleasant contentment without worry or concern. I glance at Jayde, fondly remembering those days. Recalling the moments when her only care in the world was driving her Barbie car around our back yard.  When our children are young, we hold onto them simply because we can. Letting go is a gradual process. I remember the ritual with Brady. Now, Jayde is on the verge of eighteen, I find it difficult to believe this is where we are in our journey with her. I realize baby steps are necessary at this juncture. Not just for me but also for her. Last weekend, she slept over at a friend's house. A milestone in many ways. Around 11:30, I received a text, "I miss you." When she arrived home Sunday afternoon, I received a hug, and an "I missed you" whispered in my ear. It felt good to be m...

The Smile I live for Barely a year ago, we began traveling down a new path in Jayde's healthcare journey. Once a week, we check in at our local hospital's pediatric unit so that Jayde can receive IV therapy.  Throughout this journey, we have become accustomed to bracing for the impact. We were informed from the beginning that a port was a likelihood. As the weeks turned into months, the possibility became more of an inevitability. Upon her recent EDS diagnosis, as hesitant as we were to take the next step, we knew Jayde receiving a port was now necessary.  The days following her port surgery were emotional, especially for Jayde. Seeing the new incision, soon to be another scar, is a constant reminder of her poor health and her body's shortcomings. There was nothing I could do to console my Baby Girl except put my arms around her and allow her to feel the many emotions she needed to feel. Today was her first IV therapy since surgery. Time to test out her new port. She was an...

Today is port surgery day, and right on schedule, our nerves are on edge. Still, laughter rings through the air between the three of us. We depart on schedule. Unfortunately, traffic is a disaster in our sleepy little town. An accident on the interstate means someone will not be arriving home today, putting everything in perspective. We arrived at Hopkins a few minutes late. Chris realizes he forgot his wallet, which means he has no driver's license for his ID badge. Thankfully, we have been here. We have done this routine before, and they still have his credentials. The three of us sit in the family surgical room. Since our last visit here nine months ago, the only thing that has changed is the faces of the strangers surrounding us. We get settled into the pre-op area. Vitals are needed, and labs are completed. My signature, allowing everyone to treat our Baby Girl, has been signed several times. Jayde's nurses quickly discover why her surgery is necessary, as they have diffic...

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...

There they are, the words I am not supposed to utter. Nonetheless, the unspeakable phrase comes rushing out of my mouth, much like a dam that has broken. Fortunately, my daughter and I are at opposite ends of the house. She is safely out of earshot when I screech, “I GIVE UP!” I am unable to re-cork my explosion of  words. Instantly regretting my emotionally charged outburst, it becomes a cloud of guilt cascading over me like a waterfall.  Though it can be daunting, caring for a chronically ill child requires you to keep your wits and maintain composure whenever possible. You learn to master the art of squashing the varying emotions deep below the surface. Even when it feels almost impossible, somehow, you learn to figure it out, and it becomes your new norm. I walk out onto our deck, allowing the necessary tears to fall, collecting myself before re-entering our home. A  few days before my outburst, I sat in our living room with my phone on speaker, discussing the latest ...

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. She was using the pass to do a piece in her school newspaper. Her excitement was palpable. So was her stress in 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 and keeping me updated on Jayde’s well-...

   It is Monday. The weekend has come and gone quickly. Normally, I would be dreading Monday and the routine of the week: Chris is awake at 5 A.M., out the door by 6 A.M., Jayde is up at 6 A.M., out the door, and on the bus at 7:05. There have not been too many cases of the Monday blues for quite a while. Today is Jayde’s thirteenth consecutive missed school day. Since January 29th, she has been able to attend only 5 days of school. Most of her days are spent in bed. If she is not in bed, she is on the sofa, and the blackout curtains in the living room are pulled shut. Friday, we watched Grease and an old One Direction movie. She smiles and sings along. Occasionally, I hear a little giggle. It is beautiful. The movie reminds me of a time when life was simple. A time when a boy band and the sight of Louie Tomlinson or Harry Styles made her squeal in delight. Do not even get me started about when they came to M&T Stadium, and she saw Louie backstage. What I would not give t...

There it is, that all too familiar sound once again. With the knowledge that there is little I can do but hold her hair out of the way and gently rub her back, I jump to my feet. I am at a loss to help her, but at least I feel like I am doing something. I wait for her to finish so I can empty her metal trash can and disinfect it. I have lost count of how many times I have done this in the past few hours. She looks up at me from the floor with her dull, darkened eyes as her lifeless voice mutters, "I feel like I am dying." Hearing those words prompts my heart to sink a little further. I personally know her pain, but I am helpless to remedy her suffering. Somberly, I reply, "I know, Sweetie." These episodes always seem to begin late in the evening. Jakers and Georgie, two of our furbabies, hear the unnatural noises coming from Jayde's bedroom at 2 A.M., and they come to investigate. It is like a distress signal. They are there to comfort her, remaining by her side...

October 26, 2016 Homecoming, coupled with the change in weather, sent Jayde's POTS into a tailspin. No matter how sick she has felt, she has attempted to work on her writing and schoolwork almost every day. She spent the good part of her birthday violently ill, hugging a trash can for seven hours, with her resting heart rate hovering at 160 BPM. Watching all this unfold and the resistance from some of her teachers to recognize her ADA 504 plan prompted the following thoughts this morning.  Humans are creatures of habit. Most individuals do not welcome change with open arms. It is not a character flaw. It is simply the way we were created. Reflecting on the past several years, I see life has become a proverbial roller coaster, with peaks and valleys, unexpected twists and turns. We have mastered the art of riding the peaks and work hard to find the silver linings, especially when we are in the valleys. However, sometimes, the unexpected twists and turns can be challenging to navigat...

This post was written in the summer of 2016. It is the recognizable beginning of Jayde's Journey. Little did I know when I wrote it that POTS should have been the least of our worries, but each time I read it, so much makes sense. I was sitting in my kitchen, talking with two dear friends, and they encouraged me to share the recent journey our family has experienced. From this conversation, I knew I needed to share Jayde's journey. Thus, #jrsjourney grew wings. This post is a mother's/caregiver's view of what living with POTS is like. I once believed our journey began the first week of November 2009, when Jayde became ill with the Swine Flu, but the swine flu only made the invisible more visible. Jayde was two when she had her first migraine. When I was six, I encountered my first one. So, I knew how debilitating and horrible they were. At first, the thought that she could be experiencing a migraine at the age of two did not seem possible. Until she said, "Mommy, t...