Posts

Healing is Never A Linear Journey – Breaking the Cycle of Domestic Violence

Image
*Contains Graphic Details of Abuse* For the people who have spent a lifetime being told you are too much, yet you still aren't enough, I understand entirely. Our childhoods shape and mold us into the person we become. Some upbringings are destined to lead us to success, while others are destined to lead us to pain and failure. I know, we all have free will. As grown adults, we cannot blame our failures on our parents or their lack of parenting. However, children learn what they live. When you are raised to believe you are worthless, somewhere along the way, you are going to believe you are worthless. And believe me, shaking off that shroud is no easy feat, but when a victim finds her voice and uses it, she ceases being a victim. She becomes something dangerous—a threat. A threat to all who benefit from her silence. She learns to not just survive, but to thrive. Each year, October 1 marks the beginning of Domestic Violence Awareness Month. However, you only need to turn on your loca...
Post a Comment
Read more

Disability Pride

Image
  Can you imagine living your life being judged and discriminated against for the thing about you that makes you different and vulnerable? Thirty-five years ago, the Americans with Disabilities Act was enacted. July is designated as Disability Pride Month. It's a time to educate the public while promoting inclusion and accessibility for individuals with disabilities. I wasn't sure where I wanted to go with this topic, but two separate incidents this past year have taken up too much residency in my mind. One of them I wrote about in detsil a few months ago. Now it is time to expel these lingering thoughts the best way I know how. You travel this journey long enough, and you develop a thick skin. However, that tough exterior doesn't stop the frustration when your child is consistently bullied or excluded because their abilities, or lack thereof, are not the norm. It's been our experience that many individuals who are eager to embrace diversity and inclusion don't want...
Post a Comment
Read more

It's Just Love

Image
  I navigated this past year learning to function after losing pieces of myself. It happened all at once and a little bit at a time. How do you grieve someone who was just as much a part of you and your life as he wasn't? Early on I read, there is no gone without goodbye. I felt those words deep within my soul. He isn't really gone, he is just living his life without me in it. I had already learned to live my life that way, so it was comfortable. Easy, almost. Or was it? Today, I read this as we finally laid my father's remain to rest. I want to thank all of you for loving my father, Sue, and me enough to be here. Even if there were moments that the emotionally stoic teddy bear that was my father didn't outwardly show it, each of you meant something to him.  These past four months have felt surreal. When someone we love dies, it seems like the world should stop or at least pause to give us time to process and catch our breath. Instead, everything feels like it is moving...
Post a Comment
Read more

Believing the Invisible

Image
My daughter and I are all too familiar with rude looks, glaring stares, and insensitive comments. The cause? A handicap placard, Jayde-Rhiannon in her wheelchair, boarding first on an airplane or skipping the line at amusement parks. My favorite retort to the insensitive, aggressive comments is, "And you don't look like an asshole, but that just goes to prove you can't judge a book by its cover." My retort tends to stun and silence the ignorance long enough for us to escape. Yesterday, I was excited to meet four childhood friends for lunch. We started meeting up a few months ago. One of the women I've known for more than forty-five years. We are all on our way to becoming empty nesters. Although I am functioning on minimal sleep, I don't care. I am dressed and comfortable in my own skin. Or I was, until I heard a shrieking scream from Jayde, only to discover a fiasco with one of our cats. Fifteen minutes later, the crisis is handled, but now I need to quickly ...
Post a Comment
Read more

World Autism Day

Image
Though they are seventeen years apart, from the time he was an infant, my daughter Jayde-Rhiannon and my nephew Stephen shared an undeniable connection. As Stephen aged, the pieces of the puzzle began to slide together. It has been over twenty-five years since my son Brady was in Kindergarten, and I began volunteering in our school district. In that time, the world of Autism has come so far. There was this little girl I regularly worked with. Not long into the school year, I remember asking her aid what she was diagnosed with. She brusquely responded, "We don't know. She is a tough nut to crack." The aid's response saddened and angered me. I quickly informed her that the idea of any child being described this way was unacceptable.  When Jayde began Kindergarten, there were a few autistic children in her class. Two of the autistic classmates were sweet and responsive, while one was primarily nonverbal, headstrong, and occasionally combative. I quickly understood I coul...
Post a Comment
Read more

Life's Tiny Puzzle Pieces

Image
Over the last eighteen months, I came to truly know a man I could only dream of having in my life—my Dad. Finally, he wasn't just the Dad I wanted, but the Dad I needed. He had come and gone too many times. Now, it didn't matter why he had returned to our lives. It just mattered that he did. Through our countless hours of conversation, I finally understood why he was the man he was, which made coming to terms with our sometimes volatile relationship much easier. Yesterday, my Mom said, "Take time to process and feel what you need to feel." I told her, "I need a month or two alone in a tiny, secluded beach town where I can just listen to music and write." I've been through enough death and grief to understand the process is anything but linear. This past week, going through my Dad's things has been a rollercoaster of emotions. He saved everything. At first, it was almost annoying, but I couldn't find it in me to be annoyed—only sad.  I know that h...
Post a Comment
Read more

Until we Meet Again—Dad's Eulogy

Image
The day after finding out my Dad had passed, my best friend checked in on me, "How are you holding up?" My answer was simple, "I'm not." I told him, "I am blocked. I can't write." A few minutes later, I scrolled through my music library and found my muse—the words and music of David Gilmour and Rodger Waters. As the music of Shine on You Crazy Diamond began, the tears and words magically flowed like a fountain. Today, we celebrate and remember the man, the myth, the legend—my Dad, Bill Garrett. My Dad was an enigma. Quirky even. He marched to the beat of his own drum, living life on his own terms—even until the very end. I've met many stubborn individuals in my life, but I can unequivocally say he was the most headstrong, stubborn person I ever knew. It was a blessing and a curse all in one. We often laughed about nature vs nurture and our shared traits. He was proud to claim he generously shared that headstrong trait with me and his grandchild...
Post a Comment
Read more

My Dad

Image
Today, I received a phone call that no amount of time could prepare me for. We often laughed about nature vs. nurture. He gave me a passion for music and concerts. "If you aren't in the first few rows, you might as well stay at home and listen to the radio." Dad, you gave me my stubbornness and your smile. I will miss our three-hour minimum phone calls, being able to talk about everything and nothing at all, your pearls of wisdom, your stories, and your sense of humor. Your laugh was the best. I love you, Dad. #ForeverYoung #MyDad
Post a Comment
Read more

Pride in Disabilities

Image
  July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open. Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear t...
1 comment
Read more

Rare Disease Day 2024

Image
  It's funny how ten people can hear the lyrics to the same song and interpret the words ten different ways. The first time I heard "Footprints on the Moon," I sobbed. The only person or thing I could envision was Jayde and her journey. I look at these pictures and am abundantly thankful for how far she has come. Still, I carry a hope that the brilliant doctors will soon discover the genetic links necessary to crack the elusive code, changing the face of medicine and our lives. I understand how fortunate Jayde is to have been placed with Johns Hopkins Children's Center. My immense gratitude for the few doctors who made it possible to still see those bright green eyes every day never wanes. To the average person, Rare Disease Day is just another day, yet to our family and many like us, it is 365 or, in this year's case, 366 days a year. There was a time when I heard the word rare, and my mind immediately thought of something beautiful, special, and unique. Anytime ...
Post a Comment
Read more

SMAS Day 2024

Image
Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends.  About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that cause...
Post a Comment
Read more

Love Shouldn’t Leave Bruises

Image
  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 through the fabric of time. From the age of five until the age of twenty-five, 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 emoti...
Post a Comment
Read more

It's Just Growing Pains

Image
  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...
Post a Comment
Read more