Serendipitous Girl

When I discovered December was Vascular Compression Syndrome Awareness month, my first thought was...Ugh, it's December, the holly jolly month. But as our family all too well knows, these syndromes, their symptoms, and the hell they wreak NEVER take a break. Over her twenty-one years, I have begged, bargained, and pleaded. Still, her birthdays, school events, Halloween, our birthdays, vacations, Thanksgiving, milestones, Christmas, and every other day in the calendar year have been affected. The first time you hear the words, "It is better to have a thin child than one who is obese," you cringe. The third time you hear those vile words, you find there is nothing charming left within you to give. When doctors refuse to listen, you learn to push harder. You learn to be blunt because you only have fifteen minutes to make this doctor comprehend what your child lives through every waking and sleeping minute of her life. In those fifteen short minutes, you also know if you will...

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 be...

There are images, moments, and emotions from the past several years that are indelibly etched into my mind and soul. They are forever a part of me, a part of her and her journey. I began documenting Jayde's journey with the hope it could help another family traveling our same path. My heart smiles, knowing we have.  Because this battle is relentless, I chose to chronicle her story...the good, the bad, the ugly, and all the moments in between. I use words and photos, so on the days she feels as though she can't go on, she will see just how far she has come and find the determination to continue pushing forward, when with every fiber of her being all she desires is to give up. January 28, is SMAS Awareness Day. Though no two journeys are the same, I would like to share the necessity for SMAS awareness day. This is a glimpse into our journey - Jayde's journey. Since her diagnosis almost four years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. E...