Don’t curse the darkness. Light a candle.

I first read the quote, “It is better to light a single candle than curse the darkness,” when I was a teenager struggling with darkness and seeking the light.

I found the light — or should I say, the light found me — and I fell hard and fast for Jesus, dedicating my whole life to him when I was just 17 years old. 

I spent the rest of my teen and young adult years pursuing the light in academic study and in prayer, developing a daily habit of early morning scripture reflection, rosary meditation and journaling that formed the foundation which has carried me through six decades of life.

My early morning prayer time has helped me weather the joys and sorrows of marriage and motherhood. It gives me strength and wisdom to embrace a life of caregiving with enduring gratitude for the gift of this holy life before placed in our midst.

I was reminded of this quote in the hours before dawn. As I opened the door to my bathroom, this tiny night light in the corner of the vanity guided my way without assaulting my senses in the dark.

The little flickering night light reminded me of my parents’ bathroom growing up in their home. It was a simple solution in the darkness that cost little money, uses less electricity and isn’t powered by wifi like most everything else in our home. 

Remembering that nightlight triggered good and difficult memories of my tumultuous teens when I grappled with anxiety and depression while trying to find my way. It was their little night light in the bathroom — and a cry to God — which reminded me to light a candle in the dark and choose hope by dropping the pills in the sink rather than putting them in my mouth in the middle of a long night. One decision to light a candle that dark night saved my life and lit my way for a lifetime of choosing to find the light in the darkness. 

This morning, I remembered I went to bed as my husband was perched on a ladder hanging Christmas lights on our 11-foot tree. As I turned the corner into the living room, I smiled at the twinkling lights on this giant tree, which fits just perfectly in the room. 

The empty wheelchair positioned in front of the beautifully lit tree, seemed to be a statement of how we choose light even when it’s hard. It’s how we survive and thrive.

I don’t love that Jo lives life on four wheels. But I am grateful she lives out her beautiful little life — no matter how we get there. 

But these days she needs even more support. 

I shared my concerns the other day with my friend, who is also Jo’s aide. Jo’s decline is happening faster. I feel like I’m just a little step behind rather than ahead of this change. 

We discussed using the portable Hoyer lift for transfers. She reminded me how long we hung onto the walker, hoping Jo would go back to walking. Now we use a stander to help with transfers. But these days, Jo struggles to stay upright in the stander, and the transfers always require mechanical support with a two-person assist. I purchased the Hoyer earlier this year in case we needed it. Now I know we really need it. 

We have tried to stay one step ahead of Jo’s decline — always hoping for the best but preparing for the worst. I started taking that approach years ago, when I was in one final discussion with a coordinator from the Office of People With Developmental Disabilities (OPWDD) who had argued against their assistance to help us fund a handicap accessible bathroom with a roll-in-shower. 

The woman on the end of the phone spoke in a long, drawn-out tone as she interviewed me again for the umpteenth time in our more than three years of requests. She said, “But is your daughter currently in a wheelchair because we only grant these showers to wheelchair users?” 

I started to cry and shake as I answered her while I stood beside Jo’s bed in the Neuro-ICU. “I don’t know how I can make this need more clear. YES — my daughter currently needs a wheelchair to move her from this hospital bed. As she recovers from this brain surgery and struggles with ongoing bleeding in her brain, we do not know what tomorrow may bring. Has she suffered enough for Medicaid and OPWDD to help?” Then I broke down sobbing and hung up the phone. 

I guess that conversation was a turning point for all of us because they approved the bathroom renovations. With the help of additional funds from family and friends, we were ready for the motor declines ahead and the place where we are now. I learned a lot about advocating for people with disabilities from that one experience. 

On a little altar in our living room, there is one long taper candle with numbers from 1-25, encircled in pretty holly and berries. It’s an Advent candle that my dear friend brought home for me from Canterbury Cathedral in England. I haven’t told her yet, but this simple Advent candle gave me inspiration and relief when I realized this weekend is the first Sunday of Advent. This simple candle inspired me to mark the days of Advent by lighting a tiny wick and letting the wax drip down, counting the days to Christmas. 

The time I’ll save scrambling for treats for the boxes on the Advent calendar or rifling through the attic to find the Advent wreath before December 25th, will be spent learning how to safely use the Hoyer lift and find space to charge another large device amidst the Christmas decor. 

These tiny lights in the darkness emanating from the Christmas tree, the Advent candle and the night light in the bathroom, will all serve to remind me this Advent that it is better to light a candle than to curse the darkness. 

I can’t say that Christmas preparations and Jo’s equipment changes won’t happen without some cursing. As Jo often says, “Mom prays a lot and swears a lot too.” 

But even if I curse a little, I will always choose to light a candle in the darkness and seek the light.