Showing posts from 2021

Myalgic Encephalomyelitis puts the Chronic in Chronic Fatigue Syndrome

In our family, there are no truer words than, music is food for the soul. Growing up, I would fall asleep at night listening to my mother playing her piano. It was soothing. Anytime I am happy, sad, or feeling indifferent, music is a close companion, so it comes as no surprise that both my children feel the same way. Especially when it comes to live music. Green Day, Weezer, and Fallout Boy. They were all Jayde could talk about for weeks. Brett's mom bought tickets for Jayde, Brett, and his sister Greta to attend the concert at Hershey Park. I spent a few days ensuring Jayde had all the necessary supplies, from extra clothes and medications to plenty of frozen bottles of water and Gatorade and snacks in the cooler. She spent the week leading up to the show resting. Saving her spoons for the big day. I gave her a mani/pedi the night before and washed her hair. The plan was for Brett to drive my car so they could easily take Jayde's wheelchair, and she could lay in the back if ne

Allies of Love

While running errands a few weeks ago, I ran into an old acquaintance. We were catching up with the usual pleasantries. “How is your son? Does he have a steady girlfriend?” I replied, “No, but he and his boyfriend have been together for more than a year and a half.” With a horrified and shocked look, followed by a snarky reply, she inquired, “Well, how is that?” I gave a quizzical glare until she finished. On some level, my mind knew where her comment was going, “Having a gay son?”   After what I am sure was an equally, if not more, shocked look in my eyes, followed by an image in my mind, playing out like a seventies cartoon of a baseball hitting her upside the head. I replied with, “I don’t know. What is it like having a heterosexual son?” My response left her speechless, and we soon parted ways.   Since that afternoon, I have not been able to shake the insensitive encounter from my thoughts. I am unsure if it was the underlying tone of her question that offended me. Perhaps it w

Not too Rare to Care

  Superior Mesenteric Artery Syndrome, to the majority of the world these are merely four random words put together, having no significant meaning. To our family, these words are anything but random or meaningless. These words have taken us on a journey of discovery, fear, anxiety, relief, and sadness. Today is SMAS Awareness Day. It is the day where I wish I did not need to explain the purpose of wearing purple. It is the day when I wish the same wish as the other 364 days of the year - that no one else needlessly suffers from this disease and the ignorance that surrounds it.                                                Though no two journeys are the same, I would like to share with you the necessity of SMAS awareness day. This is a glimpse into Jayde's journey. Since her diagnosis almost three years ago, Jayde-Rhiannon and I have cried a river of tears together and separately. It was a diagnosis made sixteen years too late. I witnessed the light in her eyes extinguish when her