Showing posts from 2023

Love Shouldn’t Leave Bruises

  1 in 3 women and 1 in 4 men are assaulted in their lifetime. Each year, over 3.6 million children are victims of child abuse. In the span of one minute, nearly 20 individuals are assaulted during a domestic violence attack. I lost track of how many times I was one of those individuals. Frankly, I never kept count–the black eyes, broken noses, taped-up broken glasses, bruises, concussions, and welts seamlessly blended together through the fabric of time. From the age of seven until the age of twenty, this was my life. When I should have been in gymnastics class, I was forced to hide or lie by stating, "I was hit in the face with a softball."  Yes, there were moments, and even months, when my body was not used as a punching bag, but that is when verbal and emotional abuse took over. I mastered the art of walking on eggshells. It took years for me to comprehend that my abuse was not my fault. The day I realized I didn't deserve to live a life riddled with the physical and

It's Just Growing Pains

  The journey to understanding is often filled with misconceptions, fallacies, and ignorance, but when you arrive at your destination, everything seems clearer. Almost as though the fog has lifted and from atop the mountain you can finally view everything below. Most of the time, when I share about our journey with chronic illness, it is from the vantage point of the mom and caregiver. However, when it comes to Ehlers-Danlos Syndrome, this is a journey I've been on my entire life, even when I was unaware. Jayde-Rhiannon grew up hearing her doctors consistently state a phrase that made me cringe, "It's just growing pains." I cringed because, as a child, I routinely heard the exact phrase. I remember being in my early teens and retorting, "Well, I really need to stop growing!" When I was younger, I excelled at gymnastics. Friends thought it was neat I could do a split with the greatest of ease or contort my body with my legs behind my head. The most comfortabl

Disability in an Ableist Society

          Coming to terms with the fact my daughter is disabled was an emotionally challenging road. Although I rarely discuss it, there are still days I struggle with the reality that is her life. A significant part of that struggle stems from the ignorance in the world around us, whether that ignorance is in the form of attitude or lack of education. Today, compliments of the rantings of a political commentator who needs to check her attitude and gain some education, I am fighting the struggle. Last summer, one of Jayde's healthcare professionals, attempting to justify why she felt Jayde no longer needed care, stated, "She went to Chicago, so I assumed she is doing better." If you follow Jayde's journey, you witnessed a glimpse of what it took to prepare her for that trip. Besides being infuriating, the comment was ableist. However, it wasn't the first ableist comment our family has encountered. Sadly, I'm confident it will not be the last.  Jayde-Rhiannon h

Rare Disease Day 2023

  There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime I look at my brave daughter, I know I am not wrong. However, when it comes to a rare illness, rare is also complex and frustrating; beating your head against a proverbial wall and shouting until your voice is hoarse–to bring attention to the medical community about something invisible to the even trained eye battle. Rare is understanding for every good day. There is a slew of bad ones waiting to wreak havoc. Rare is the nurse who is a caregiver, therapist, friend, and family all in one beautiful person. Rare is the husband and father who struggles with his own pain every day yet still takes care of his girls. Rare is our way of life. Today, across the world, is Rare Disease Day. In medical school, doctors are taught when they hear hoofbeats, they should look for horses, not zebras. This analogy refers to horses being common while zebras are rare. This line

Superior Mesenteric Artery Syndrome Awareness Day 2023

  Jayde-Rhiannon's first Christmas was memorable. She was two months old, and we had been in our new home for all of five weeks. There was still much unpacking to do, and I decorated the best I could. Since I was not up to traipsing through a field, there was a Charlie Brown Christmas tree in the corner of our living room. However, none of that mattered. On Christmas Eve, our home overflowed with people carrying the title of aunt, uncle, mommom, pop-pop, grandmom, grandpop, and cousin. Jayde was dressed in the sweetest green velvet dress, resembling a human baby doll as she was passed from relative to relative. After the past year, all seemed right in the world. In preparation for our joyous evening with our family, I timed Jayde's feeding so she would be good for the next four hours. The evening was perfect until it wasn't. Two hours into the festivities, Jayde threw up all over Chris. I didn't think her little body could hold so much fluid. She had never spit up befor