We beat on, boats against the current.

“So we beat on, boats against the current, borne back ceaselessly into the past.”

I've been thinking how much this line from “The Great Gatsby” applies to a rare disease journey. My wife is a high school English teacher and we end up quoting this line more often than most people would believe. Often it feels apropos of nothing, but just as often we're probably giving voice to a fundamental weariness. And I'll concede at the start that Fitzgerald's line is meant to and succeeds in applying to all human beings' struggles (or at least all Americans) so it shouldn't be news that it also applies to a specific subpopulation facing rare disease. It wouldn't be considered the great American novel if huge numbers of people hadn't felt it spoke a truth of their experience.
But it is a truth that we rare families beat on against the current. The current that says your child is not strong enough to go the places other children go. The current that buffets us with more trips to the ER. The cascade of challenges with tube feeding, diapering, medicating, catheters, adaptive communications equipment, wheelchairs and ramps. The waves of fear that confuse our unchartable course.

We go against the current not because we have a clear course ahead but because giving into it takes us nowhere we want to be.

But we are borne back. That word “borne”. A heavy burden to shoulder. Of course our situation can be burdensome. We bear it for our children. And they bear a heavier burden than the parents, at least physically.

And just the sound of “borne”: born, reminds us of how this struggle started. The birth of our child. The expectations we had while expecting. How different our path has been compared to what we thought it might be. The most hopeful (if vague) advice I received at the time of our son's diagnosis was from our minister. She had a special-needs granddaughter. “It changes the journey.” I am constantly reminded of this truth. And unexpectedly comforted by it. The journey is not going as I expected. But whose does? Those expectations are things of the past. Like Gatsby my imagined and hoped for future is not what fate doled out since the birth of my son. The journey has changed.

Borne back to setbacks. A degenerative disorder is all about setbacks, regressions. The tide is against us. Our best efforts may pull us forward briefly but the longer view shows our child regressing.

Ceaselessly. The tide is unceasing but so are we. We are tenacious and persistent because there is no choice to be otherwise. What could we do instead of struggle? Let our child suffer? Let them get less than the best care? We keep our focus forward.

What light are we fixing our gaze upon? In my own case in my best moments it's the light in my son's smiling, sparkling eyes. Focused on his happiness I can forget the struggle of the future for a time and live for the joy of the present moment. We named him Lucas not knowing the name can translate to bringer of the light. We also didn't know his copper deficiency would produce the most incredible ice blue eyes that sparkle with a light that buoys and sustains us. But I think most often for most of us the light is more distant, like Gatsby's. It beckons us. It's the light of hope. And hope is future-facing. Ever forward. The hope of a new treatment or cure. If we force ourselves toward the future, gene therapy or some bio breakthrough might change our course. Like Gatsby we are optimistic, perhaps unadvisedly optimistic.

Unlike Gatsby we might make it across the troubled waters to reach our hope.