Loving someone who is a unicorn, mean something in every era of their life. Not the Taylor Swift eras that come with a glam squad, cool lyrics and a fan based made up of more members than families that live with rare disease. For clarity, 1 in every 10 families in America love a family member with a rare disease. One in every 2 people in America love Taylor Swift. No shade on Taylor, but there are approximately 30 million people living with rare disease, compared to the 800 million Swifties.

Though I would venture to say that there are plenty of rare disease people that are also Swifties!

Including Bridget.

When I think of our journey with rare disease, I segregate the eras of Bridget’s life.

There was the Undiagnosed Era. The first six years of her life where we knew “something” was genetically wrong, causing all of her health issues, but not what to call it. I coined the phrase “Bridgetitis” and funnily enough, in Bridget’s early medical records some of her doctors did as well. These years were some of the most difficult. In her first year of life, Bridget had more hospitalizations than she had months lived. In the first six years of her life, she spent more time in a therapy setting than her home. By six years of age, she had already had three surgeries and countless procedures. In reflection, in Bridget’s first six years of life she had been hospitalized more times than our entire family (including aunts, uncles, cousins and grandparents) combined. I think of this era as the most difficult because everything was unknown, we just tried our best to have her survive and thrive.

There was the Discovery Era. When we traveled to Georgia based on a recommendation of a reader of this blog, hanging on to a belief that someone, somewhere, was willing to do the testing needed to give us an answer. I will never forget sitting at my desk 3 months after that initial visit getting the news that Bridget had PACS1. Then hearing that no one knows anything about it. I found our PACS1 family during this era. Meeting families from around the world, both online and in person. Sharing our struggles, our tears but most importantly our laughter and love. A non-profit was created out of this love, this dedication to all PACS1 Families. Those newly diagnosed and those long into this life. PACS1 Smiles is about family, discovery and being the advocacy needed for research opportunities.

There was the Public School Era. This was my favorite era. Yes, there were tears. There were struggles with the public school system, trying to define an IEP for a child who could not be defined. More importantly, for Bridget, she was surrounded by peers who advocated for her (once punching a bully in the nose!) and a team of special educators, general educators, paraprofessionals (as much as I hate the term para- because they are not half anything!) and even janitors who not only loved Bridget but cared for her. She was included, she was coddled and most importantly, she was a part of our community.

There was the Covid era. I hated this era, it was the era where we lost everything attached to the public schools, we lost the therapies, we lost her peers. When the therapy centers finally reopened, those that worked so hard to give Bridget the skills she needed to communicate. When the schools finally reopened her peers were tried, but Bridget became the class mascot. The teachers tried, but she had lost so much that she was spending more time out of general education and lost more time making those important peer connections. This is the era when I realized what age 22 would look like and while disheartened, began planning.

There is the Cushing Era. The era when we made the decision to sacrifice my belief in inclusion and realize my dream of Bridget going to homecoming, prom and graduation with her typical peers was my dream but not her reality. While difficult, I truly believe we made the best decision. Bridget is a part of HER community, the community that embraces her differences and finds ways to create a foundation of life beyond the school system. Bridget works so hard at learning vocational skills and safety practices. This decision, the one to remove her from our community but letting her build her own, was difficult but one I have never regretted.

The Guardianship Era. This is an era we are just entering. There are so many conversations we are having with Bridget’s sister about what this era may look like. There are conversations with our State Representatives to demonstrate how convoluted and difficult it is for parents to obtain custody of their suddenly adult children. There are so many decisions, and we have not even fully immersed ourselves yet.

There is the Love Era. This era began the moment Bridget was placed in my arms. The era where even in her darkest moments, she holds my hand. The love she shows to everyone, even a stranger in Market Basket that “needs” to have pop tarts. Bridget loves regardless of color, ability or bloodlines.

She just loves.

This Rare Disease is not something that we volunteered for, we were drafted. While there might be more Swifties than Rare Disease children, they are not only epic but they thrive through every era.