Serendipitous Girl

Yesterday was the usual: a doctor’s appointment (this time for me, woohoo!), dinner out with my Baby Girl, then a little shopping. Jayde-Rhiannon wanted to take her bargain-shopping queen-of-a-mamma to Marshalls. After two hours and a basket full of treasures, we were done. No, I am not going to divulge the total. Jackson has yet to see the receipt, but every item was necessary, and we saved a lot of money. Of course, during our shopping escapade, we could not forget our furbabies. Jayde and I were so excited to find a cute little scratching post for our feline zoo. Especially, since the seven-foot tower in our living room, the corner of our custom-made sofa, and a few door frames are not merely sufficient to sharpen the tiny daggers on their adorable paws. Every day with the Jackson Pride is an adventure. For the most part, all of them are cute, fluffy extensions of our family, and we spoil them whenever we can. Every cat was enthralled with the new toy. After witnessing their enthusi...

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...

Recently, the three of us have been traveling back and forth to Johns Hopkins Hospital to work with some exceptional doctors, hoping they will help our Baby Girl. We were overjoyed when we thought they had found another piece to Jayde-Rhiannon's POTS puzzle. Instead of a helpful puzzle piece, her doctors found two other non-related medical issues that require immediate attention. The first is Superior mesenteric artery syndrome (SMAS). The second is Nutcracker Syndrome, which is a compression of her left renal vein, between her aorta and her abdomen. It is believed Jayde was born with these medical issues, and despite all my pushing (and you know I can push), her doctors refused to look outside the box. The incredible miracle is that she has survived sixteen years without worse issues, and if you know what she has been existing with, then you know her journey has not been easy.  The SMA syndrome causes severe abdominal pain, nausea, and vomiting, along with several other symptoms. ...

My human bay doll at 6 months I sit in my living room with the curtains pulled open, fixated on the burnt orange glow across the horizon as it muddles with the bright blue of the morning sky. Having endured many late nights and all-nighters lately, over the last six months, I can count on one hand how many times I have been awake to see the vivid colors of a sunrise or hear the little corner of our world come to life. Most mornings, as Chris kisses me goodbye before he begins his day, I am barely coherent as I utter, "I love you," audible in a way only he can understand. We are naturally night owls. However, Jayde’s POTS has taken that character trait to an entirely new level.  As my pillow and plush weighted blanket lulled me to sleep in the early morning hours, I clung to the last remaining shreds of denial and hope. Hopeful that Jayde's test will show she is okay, healthy, and not in need of major life-altering surgery. The combination of the morning noises of ...

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 ...

As we walk across the bridge connecting the parking garage with the hospital, it is obvious that the building we are entering is its own little universe. Thankfully, we have only been here once before, but that was many years ago. We were visitors then; today, our purpose is quite different. The exterior stained-glass windows are beautiful, artistic even. Their panes filter the sun entering the building, casting a warm glow. I observe beautiful children bravely smiling. They are surrounded by nurses and parents helping them walk while numerous tubes and IVs are attached to their frail bodies. The sound of children laughing, merely being children, fills a long corridor that ends with an arcade. Walking to our destination, I observe parents in the family suite, talking with doctors fresh out of surgery. It does not take much observation to notice their heads are heavy and their hearts are worn. I quietly pray their news is positive and that today brings them a ray of light and hope. Afte...

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...

This morning, while tears streamed down my cheeks, I sat in my living room in awe. Though it was a bittersweet moment, it was a moment filled with sweet justice. Today a lion roared, excuse me, lioness, and she roared loudly. I watched the sentencing of Larry Nassar; no Dr. in front of his name any longer, as he has been rightfully stripped of his title. While Judge Rosemarie Aquilina did not set out to be a hero, today, she, along with every victim of Larry Nassar, are my heroes. These women knew they were facing a demon bigger than just one little man. Still, they bravely came forth and brought his darkness into the light.  This depraved, vile man was sentenced to 60 years in federal prison for child pornography, with an additional 175 years from Judge Aquilina. It is a far cry from a six-month sentence, with parole in three months. Her sentence was bold; it is an assurance any light of day he ever sees will only be from behind bars.  As I read over the po...

Twenty-four hours in a day, seven days in a week, 8,760 hours in a year. It has been a little more than two months since this battle, for time, took on a life of its very own. Time is no respecter of persons. Simply put, it is a precious gift. A gift we take for granted in the routine of life, almost assuming we have an unlimited supply. For all our hopes and wishes, we cannot pause time, nor stop it. We can only cherish the moments allotted to us, comprehending the gift we have been bestowed. November 18, her birthday, another milestone; 84 years young or 735,840 hours of living. Dinner at her favorite restaurant, surrounded by the love of her family. What began in 1950 as a simple family of three, two years later became a family of four. Now we have grown into a family of eighteen. Small by some comparisons, still it is ours–mine. The few who are aware of the truth know this will most likely be her last birthday celebration. The gift of knowledge a...

Last spring, I wrote a piece chronicling the journey of my daughter's illness with POTS. After publishing it, my son lightheartedly commented, "Now it is time to write about our journey." I cringed because there was nothing lighthearted about our journey. I uttered the truth from within my heart, "I am not sure I can." While I knew I could write something, I was keenly aware of the deep trauma still tucked right below the surface. I was emotionally raw and drained from the events of the past year. If I was not careful, I was keenly aware that a volcanic disaster of pain, remorse, and regret would come spewing out, and no one could halt the explosion.  I wrestled with the uncertainty of where my writing would take us. I was unsure if we were ready to revisit the past scars jointly, knowing I would open fresh wounds and possibly old ones as well. Was Brady prepared to read my thoughts? If he was, how would he feel when I was done? As difficult as the pas...