When I Accepted Our 'New Normal' While Caring for My Son With a Rare Disease


When my child was diagnosed with a rare and chronic medical condition, my life went through many changes — rapidly. I cried, I mourned and, at times, I felt despair. But eventually, I picked myself back up. I coped with the loss of the life I thought I would have, and I learned to accept my new normal.

“New normal” is a term that most parents of kids with rare and/or chronic health conditions hear often. 

Medicines four times a day? That’s our new normal. 

Testing every dirty diaper for blood? That’s part of our new normal.

Weekly doctors’ appointments, weight checks and therapies? New normal. 

Staying up until 1:00 in the morning and researching said rare diagnosis, only to go to bed at 1:15 a.m. and be woken up at 1:30 a.m. by your baby crying out in pain? Yep, new normal.

Constantly questioning every symptom and sign and flip-flopping between denial and acceptance? New normal on a daily basis.

But gradually, ever so slowly, “new normal” just becomes our “normal.”

I have been cruising at 0.5 miles per hour in the land of our normal for months now, slowly growing accustomed to the ins and outs of my son’s condition, begrudgingly realizing there’s no rushing his body’s process and learning we’re all truly passengers along for the ride of his rare condition.

And then it happened. His condition changed direction for the worse, requiring new daily treatments, creating new hourly worries, resurrecting previously buried worries and leaving us passengers headed in an unknown direction. Suddenly the familiar, comfortable proverbial rug was pulled out from under us, and we were left begging for our normal to return.

I cried.

I mourned.

I felt despair.

But now, I look at my beautiful son and realize the only thing to do is to keep moving forward. I am picking myself up, piece by piece, and realizing that while this new direction is unknown and scary, it, too, will eventually become my “new normal.” The new treatments, the new questions and the new symptoms all will become my new normal. And new normal will eventually just become normal.

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