Seven and a half years ago Coral was diagnosed with Dup15q syndrome. At the time, it felt like this rare diagnosis shattered the floor my life was built upon. But in actuality, rare catapulted me face-to-face with an uncomfortable truth in life — anything can happen at any time. Sure, certain things are more or less likely to occur. But even when something is unlikely (or very unlikely), rare doesn’t mean it won’t happen. On the contrary, rare will happen, at some point and to someone. 

When Coral’s older brother, Tate, was diagnosed with a rare heart condition last spring (1-2/100,000), I couldn’t believe the odds. I love math, but I couldn’t seem to get the numbers to work out— two kids with unrelated rare diagnoses. What were the chances? 

Rare means I touch the reality of “anything can happen at any time” on a daily basis. Instead of treading fearfully through life, rare gives me the chance to open to the whole of life — the sadness and the joy — because I see how fleeting any one thing can be (like Tate’s health).

Rare often feels like I live in life’s fringe areas — the dark corners inhabited only by those who fall into this unlikely probability. But it equally means seeing the way the light enters into these areas, in rays and sparkles so few people experience.

Rare means putting faith in possibilities not yet actualized and not even imagined. It is a curiosity in a future that looks far different than I expected. 

Rare is a hope in science, treatments and cures. It is a faith in knowing that I am never walking this path alone, as isolating as the experience may feel at times.

Rare means I am more grateful for small things — a successful dinner out to eat as a family, a family outing to an activity we all enjoy and a day without medical appointments. It’s the realization that the small things are often the big things.

Rare is learning as much as I can about something I never knew existed only eight years ago. It is raising awareness about Dup15q syndrome, non-spoken autism, sensory processing differences and AAC use.

Rare is advocating for accessibility and inclusion for Coral. It is a daily determination to help others shift their perceptions about disability, so they can more freely see Coral for who she is, including the inherent value in her life.

Rare is opening my arms with empathy and compassion to both Coral and Tate, knowing that I don’t know their experiences, but I can be present with them through the hard times. It is hoping others will also open their hearts with compassion (not pity) to my kids and our family. 

Rare can still bring me to tears on certain days, but it also serves as a reflection that helps me see how far our family has come over the past 7 years. 

Rare is watching with great pride at the resilience that both Coral and Tate show in walking their own respective paths, knowing they show up each day and do the best they can. 

Rare is deciding to live one moment at a time, courageously stepping into the unknown with everyone else in the world who walks a rare path in one way or another.

Rare is our family’s day-to-day life. 

Rare is my parenting path. 

Rare is my Coral fish — swimming through life in her own river in her own way (and probably with some underwater music headphones).