A Journey of Joy, Grief, and Resilience in Parenting a Child with a Rare Disease

"When you are the parent of a child with a rare disease or chronic illness, you become adept at compartmentalizing. So much so that it can feel like pretending at times. There are moments when you can almost forget about it – almost - until something happens that reminds you: Ahhh, there you are! That ever-present reality is never truly far away."

This is especially true when your child has an invisible illness. You can go days, sometimes even weeks, without thinking about it, and then—BAM!—a sudden reminder hits like a sucker punch to the gut.

I got sucker punched last week.

A Magical Day in the City

My daughter was home from college for spring break. One of her scholarships gifted her two tickets to the Broadway musical of her choice. She chose The Outsiders. Her sister was her plus-one, and I got to tag along.

The entire experience was magical. Even the traffic gods were on our side, allowing us to reach the city in record time. The show was phenomenal, and afterward, we dined at Ellen’s Stardust Diner, where aspiring Broadway performers danced on tables and treated us to incredible live singing. I could not have asked for a better day. The weather was uncharacteristically warm, hinting at spring. The city buzzed with energy, and people were kind.

For the rest of the week, we rode the high of that Broadway experience, reliving the joy and normalcy of it all.

Reality Hits

Then Friday came.

My daughter had a dental appointment. Now, going to the dentist isn’t a fun experience for most people, but for her, it’s next-level awful. One of the insidious ways her rare disease affects her is through ongoing dental issues. Her immune system attacks her salivary glands (among other things), resulting in decreased salivary production and dry mouth. We've lost count of how many cavities she has endured in her short life, and just a few months ago, she had her first root canal.

On this day, she was scheduled to get a crown. We went into the appointment in good spirits, still basking in the Broadway glow. Determined to keep the happiness alive, we even played the show's soundtrack while waiting for the procedure to begin.

What was supposed to be a three-hour appointment turned into a four-and-a-half-hour ordeal. The first crown didn’t fit correctly, so another had to be milled. The adhesive proved difficult to remove, requiring additional poking, prodding, and discomfort. There was bleeding, and there was pain.

Minute by minute, I could feel the lightheartedness of the week slipping away. By the time the appointment finally ended, my daughter was sore and exhausted, and I was completely depleted. Even the weather shifted with our changed mood. When we arrived at the appointment, the weather was warm and sunny. When we left, the sun was low in the sky and a winter-like chill was in the air. We rode home in near silence, each of us lost in our thoughts.

The joy of Broadway felt like a lifetime ago.

Holding Space for Both

On that drive home, I found myself reflecting on grief. It is just as insidious as my daughter’s rare disease. I thought I had a handle on it and believed it was under control. But at a moment’s notice - just like her condition - it flared up, unbidden and overwhelming. In the blink of an eye, I was back in that place of sadness, questioning, Why me? Why her? Why us?

This is the reality of parenting a child with a rare disease or chronic illness. Moments of normalcy and happiness exist, but so do moments of grief and exhaustion. And in moments like this day, they exist side by side. The trick to managing it, as I am still learning, is to hold space for both.

I reminded myself that Broadway happened. The joy was real. So was the pain of that dental appointment. And both are part of our story. So, my daughter and I talked about it. We reminisced about the incredible actors and singers we saw just days earlier, reliving the magic of that afternoon. And we also acknowledged how much this dental appointment stunk, how unfair it felt, and how exhausting it was.

We held space for both - the joy and the struggle - because that is what this journey requires.

To Other Parents on This Journey:

For any parent walking this same path: I see you. I feel it too. And while the sucker punches may come, so will the moments of joy. Hold on to them both.