On Loss, Time & Hope

Time is measured in refilling monthly pill prescriptions, laundry twice a week (if not more frequently), daily dishes, brushing and flossing my teeth. Again. Again. Again. 

Time is measured in the number of years we've dealt with PANS and Lyme. Strep. Any infection.

And time is measured by all we have lost, from the absence of normality in the lives of my children to the loss of our beloved older dog this year. 

And the loss of my cousin, to pancreatic cancer this year.

The loss of my father-in-law, who died peacefully at home, surrounded by loved ones.

The loss of my mother, to Covid, not so peacefully, and alone.

The days rush by with their busy-ness, the hectic scattering of activity and work. And then the weekend stops by. Fatigue folds itself around me, much as the fog smothers the earth. Sadness seeps in under the layers of heaviness and I feel. 

I find that when I'm in crisis, when something is terribly wrong with one of the children, I act. I react. I remain calm. I do. I'm strong. 

It's in those in-between minutes, Saturdays, and the Three A.M. Room, when everyone else sleeps, when I wake to find myself alone with my thoughts, that grief finds a perch. 

To be fair, time is also measured in the bicycle rides my husband and I challenge ourselves with, and our climbing speeds.

Time is also measured in the years since our last horrible episode endured by one of the kids.

And time is measured by the longevity of friendships and the love of close family that have helped us rise above the hardships.

Mindfulness means that I think only about right now, this moment in time, where one child is happy and the other, at least, is safe, and I am warm and snug in my house, a house with light in the midst of a cold, dark autumn night.

A husband who wants to drive me to pick up one of our kids because he knows I'm tired. The dog who is thrilled to join us.

The cozy, hot apple tea made by my daugher for me.

Comfort can be found in the smallest of things. 

Comfort means that both kids are safe for today, that we are a family and despite the cold world outside, we share love and warmth. 

But comfort cannot dim the truth that PANS will not disappear on its own. PANS (and Bartonella) do not resolve without interventions and when children and adults have been sick for too long and refuse medical treatments, we parents are helpless. 

Much as I was helpless to save my cousin, my dog, my mother.

But perhaps time also offers hope.

Maybe time will move them to a maturity wherein they choose for themselves to conquer these illnesses.

Perhaps time will provide us with stronger research and remedies.

And maybe someday, we will measure time in the number of days we celebrate healing.