Rare Disease Day 2019

 It is ironic how one little word can have a variety of connotations. How one simple word can prompt your heart to sink or make it soar.

Normal. What is normal? For years, we shunned normalcy. Normal is boring, be you, whatever you are. Why attempt to live your life fitting into a box society believes you should be in when you were born to stand beside it in all your glorious self. We adopted this mantra as we navigated raising an adolescent with mental illness. An adolescent who desired to be anything but himself. The mantra, which seemed to suit Jayde-Rhiannon, was from a favorite book, “My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage."

Being raised to believe fitting in was a necessity, I desired the opposite for my children. I wanted them to understand it was alright to be who they were, never fearing to say what they felt. This would come to bite me on many occasions as their personalities shined. Still, being true to themselves, whatever that truth was, remained the priority. When we have children, we have these preconceived notions about who and what they will be, what activities they will be involved in, and where life will carry them. Then, as their life unfurls, we realize these are our dreams, not theirs.

Suddenly, when Jayde became ill, normalcy was all I craved for my precious girl. I craved for her to have the capability to participate in all the activities she once loved. I craved for the house to constantly be filled with friends who were once like our other children. I craved for a future where her physical limitations do not hinder her dreams. Along the way, I struggled. I was angry, I was sad, and I was fighting to make sense of something. Something that was never going to make sense. Once acceptance settled in, these cravings subdued as we understood this was our daughter’s new “normal.”

We then had to educate ourselves on a new word, “rare.” The definition of rare is An event, situation, or condition not occurring very often. A thing not found in large numbers and consequently of interest or value. Unusually good or remarkable. No one needed to inform me my daughter was good or remarkable. Unfortunately, rare is not a good quality when it refers to a medical condition. It is of interest, but only to a select few doctors. We discovered most people, especially those in the medical community, run in the other direction because they fear what they do not know or understand.

Jayde has a dear friend, Bailey, who is one of the rare people in Jayde’s life. Sadly, she lives over an hour away. The distance does not make for the most convenient of friendships. Still, she and her family were the first to come to spend the day with Jayde and us after she arrived home from the hospital. She accepts Jayde for who she is. She understands there are going to be many days when Jayde is only capable of watching movies and listening to music and also many days when even those activities are impossible. In spite of all of this, she still loves and accepts Jayde for who she is. Last Saturday morning, Bailey picked up Jayde for a sleepover at her house. It was the first sleepover in over a year. Chris and I stood at the window as they drove off, “I cannot help but feel nervous about her spending the night away.” Chris wrapped his arm around my shoulder and sighed, “I know.” You will always be concerned about your children’s well-being, there is no avoiding those feelings. When your child is constantly ill, it inserts an entirely new level you never knew was there.

Sunday afternoon, Bailey’s family brought Jayde home after first stopping at a pet store in York. Baby Doolittle sent me pictures of the animals, along with snippets of what they were doing. Though it was only pictures and words, I could feel her happiness. Her sleepover had given her something she desperately neededa rare chance to feel like a normal teenager. Not long after the text informing me she would soon be home, I received another text, “I just got sick and threw up.” One text was all it took to take me from a relaxed state, to being consumed with worry and fear. Once Jayde was home, we concentrated on getting her the medications she needed and her well-being.

Monday, while discussing what happened on Sunday afternoon, Jayde, sensing my angst, stated, “Don’t worry, Mom, it was normal people sick, I am okay.” I laughed and began to cry at the word normal. Normal people sick? Okay. Meaning this was not her SMAS or a migraine, she had become car sick. Something she had not experienced for several years still it was the most benign explanation for her sickness. There it was, normalcy. Albeit in a strange and rare form.

Jayde’s journey has pried my eyes wide open. Forcing me onto a path where I would become aware of a world that I formerly only knew existed through pictures, sad commercials, and the occasional highlight in a movie or medical drama. It is a world no parent ever desires to be a part of. It is a world no person or child should ever exist in. Still, it is a world as real as you and me. Today is Global Rare Disease Day. There are thousands of rare diseases, most with no cure, and many patients going undiagnosed, the majority, if not all, of their lives. I have read through the entire list. It is staggering. Until Jayde’s multiple diagnoses, I had heard of only a handful of these diseases.

Rare Disease Day originated from the need to inform the general public while seeking to raise awareness among policymakers, public authorities, industry representatives, researchers, and health professionals. This awareness is desperately necessary because 1 in 20 people who suffer from a rare disease know they are different, yet they only desire the opportunity to feel normal—whatever normal may be.



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