My life has gotten quite small and I like it this way.
When my husband and I married, we were both very involved in ministry in the Catholic church. We looked at our life in seasons, envisioning a period of time alone as a couple, then raising a family, and then welcoming a time of retirement where life could slow down.
I envisioned myself writing and speaking in public more when our children were grown and when Johanna’s health stabilized. I was certain that the chaotic seasons of her early years of diagnoses, brain hemorrhages, shunt malfunctions, and surgeries would slow down — if not come to an end with more non-surgical treatments for this rare disease.
But instead, the challenges continued and I slowly realized that the greatest purpose of my life would come through caring for my daughter and advocating for others with similar needs.
Still, writing and speaking have kept me busy on the side and focusing on more than doctor appointments. As Jo got older, she was able to attend these events with me and even share her story of hope in testimonies and in song.
Jo seemed energized by traveling, meeting groups of people and she LOVES to perform. She really enjoyed performing on stage at NYU Kimmel Theatre in NYC with a group that offers people with disabilities a place to shine their talents before a live audience.
A few years before the pandemic, our lives were already slowing down as Jo’s medical issues increased and the brain injuries seemed to widen the gap between Jo and other young adults her age.
I felt like I was pushing Jo to do the things she and I loved. But now it was harder to do. Our final event before the pandemic was speaking at a neurology conference at the University of Buffalo — to patients and caregivers who were battling another rare neurological disease. Jo was excited and pretty tired when we headed home.
Then came 2020 and life came to a halt — or did it? Maybe we have only just begun to find our purpose as life slowed down.
One morning last spring, I asked the Lord if I was ever going to be giving another talk or signing another book. God answered: “Does it really matter?”
To which, I replied, “No. It doesn’t matter. I’ll keep loving and serving you right where I am — as a mother, wife, and caregiver, who also raises chickens and now goats.”
That same morning, I went to church and a woman who runs a few church and civic groups on the North Fork asked me if I knew of someone who could speak at a women’s breakfast in the fall.
I laughed and said: “Yes — me!” Just hours after I told God it didn’t really matter, God showed me that all things matter when we do them with love. He gave me the opportunity this past weekend to do what I love — share about my faith and the lessons I have learned from living it in the midst of trials.
I gave Jo the option of coming with me, performing a song and signing books, or going to breakfast with her brother and sister-in-law. She chose the latter because as much as Jo loves to sing, she loves her brother more.
After that day, I asked Johanna how she felt about taking trips, going to conferences and speaking at events again. In her delayed responses, Jo clearly expressed that the headaches, the balance issues, and slow and slurred speech make it hard to do some of the things she used to love to do.
Then, slowly, Jo expressed her hope. Simple tasks of daily life, art projects, music, reading good books, playing games with a friend, and working on her farm give her more joy.
Jo’s short answer was “A farmer’s work is never done” and she was glad about that! I chuckled with joy and pride at Jo’s response. Then she looked at me with a serious expression and reminded me of all the chores she needs to do each day to care for her chickens, goats, and to “show people my brand — Jo’s Eggcellent Eggs — so they know I sell eggs.”
My daughter’s quiet responses reminded me of another 20-something-year-old who struggled with chronic illness and yet found her purpose in the simplicity of life lived in love.
St. Terese — affectionately called “the Little Flower” whose feast day we celebrated on Oct. 1 — is one of Johanna’s favorite heroes in spiritual life. St. Terese didn’t do many noteworthy things in her 24 years of life. But her global and timeless impact was conveyed through her writings on “The Little Way of Love”.
In Terese’s words:
“Our Lord does not look so much at the greatness of our actions, nor even at their difficulty, but at the love with which we do them.
Miss no single opportunity of making some small sacrifice, here by a smiling look, there by a kindly word; always doing the smallest right and doing it all for love.” (“Story of a Soul“)
Last week on Jo’s Farm, we hosted some guests from another community program for young adults with disabilities. We called the program; “Coops and Canvases”— a clever name coined by Jo and one of her aides.
When Jo woke up that morning, I reminded her that she was hosting friends at her farm and we had a lot to do to get things ready.
Jo drank her coffee a little faster and helped me make a list of things we needed to do to be ready to show her new friends around her backyard farm.
I gave Jo all the support she needed with seizure and pain medications and then we set to work putting out art supplies, moving a few chairs, and discussing what she would say and do on the tour.
We were meeting three of the women for the first time and one attendee was a longtime friend of Jo’s.
I deferred the conversations to Jo and reminded her with subtle words and facial cues to help her show her new friends around the farm.
We talked about the garden we planted to attract the butterflies and the hummingbirds. Jo gave the ladies hay and showed them how to feed the goats, introduced them to the chickens, and how to collect the eggs.
Then Jo showed them the shed turned art gallery where Jo creates art with canvas and paint markers that distract her from the hard things of life and brings joy.
After the leisurely tour, everyone sat down to create some art on canvas and enjoy each other’s company.
The thing that struck me most about the visit was the love and respect these women showed each other. They listened and waited for each other to speak. They walked around the farm slowly, not rushing ahead of each other and taking in the sights and smells.
It was a quiet morning filled with lots of laughter and love. And for Jo, it filled her little life with great purpose and countless joy.
Sometimes we think we need to accomplish more and great things to live a purposeful life. I used to think so too until I came to realize that most times, less is more.
If I never give another talk or write another book, my life lived with love will suffice. My daughter teaches me every day that a smaller life lived in love achieves an even greater purpose here on earth and in heaven too.
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