Anyone who cares for a person with brain injury knows that routines are very important to help them organize their day, memory and indeed wrap their brain around the tasks ahead. Truly, all of us function best with routines and order in our lives, though some of us like it better than others. I land somewhere in the middle. I like order and routines, but I also like to go with the flow. I oftentimes have to go with the flow, even if it is rushing through my day like a dangerous river, in the form of a medical crisis or event demanding all of my attention.
To facilitate structures, routines and help my daughter to learn the difficult concept of time, we have developed a specialized planner. In this planner, there is a calendar which is specifically made for Johanna, complete with picture cues and bold lettering and diminished visual clutter, making it easier for her brain to process the information. Thanks to the dedication of her BOCES providers facilitating her education at home through Riverhead school district’s home instruction program, Johanna has many tools and strategies to help her become more independent and functional in our fast-paced society. Her speech and language pathologist designs the calendar each month, with input from our family schedule. This same provider also helped to assemble the planner, complete with removable picture cards which Johanna selects and places on a Velcro strip to plan out her day.
Each morning, one of our family members or her aide or teacher, will sit with Johanna to do the calendar and plan out her day. This summer, I have decided that Johanna and I will spend these moments together. I try to make it fun and joke with her about whether emptying the dishwasher for Mom should take precedence over Johanna’s breakfast or recreation time. Our antics usually start the day with laughter, a much-needed medicine.
On a recent morning, I moved our planning time to the porch just as the morning sun was warming my rocker and drying the dew from the hanging flowers. Johanna was a little anxious this morning, partially because she wasn’t feeling well and partially because she is adjusting to the lighter summer schedule. We discussed the possibility of using our aquarium memberships to take in a seal show or maybe to hit the water in the lovely used canoe we purchased from a yard sale this spring. Recently we have been trying to tie in the passage of time to our daily routine by developing discussions around the calendar, looking backwards and forwards at the days ahead.
As we worked on these concepts, I directed Johanna’s attention to Thursday, July 12 and the picture of the heart, hands and the wedding rings. I asked why this was on her calendar. With a broad smile of recognition, Johanna recounted to me that it was my wedding anniversary. “Oh yes!” I quipped, “Now, I remember! Thank God you reminded me Johanna!” Her smile stretched from ear and to ear as she erupted into giggles over what she aptly defines, “Mom’s short-term memory issues”.
I reminded her about our backyard celebration for our anniversary last year. She recalled that it was 25 years because she remembered the big 25 that my daughter impressed in the grass with the lawn tractor. This great visual cue also helped Johanna count forward to determine that we were celebrating our 26th wedding anniversary this year. Success.
“Yes”, I began with a smile, “Twenty-six years of sheer wedded bliss. It’s been all roses and romance all of that time.”
“Seriously, Mom?” Johanna emphasized, “I live with you and Dad and I know that it’s not sheer wedded bliss or roses all the time.” How true. She knew us quite well, especially since we experienced an empty nest this year as all Jo’s older siblings were in college and she was the only one left with the two love birds. Hmm….she is wise beyond her years and ability.
Her serious tone bounced back to laughter as we bantered back and forth until finally I focused our conversation back to one of those living truth moments. Thinking I was the teacher, I pulled a quote from 1 Corinthians 13:7; “Love endures all things.”
“Johanna, do you know what it means to endure,” I asked, as scenes of her life flashed before my eyes. She kind of shrugged her shoulders in the affirmative.
“It means to continue to go on,” I offered, as I reflected on how this child was truly a living image of endurance, despite hardships along the way.
“Well, I continued, “When it comes to our marriage, Daddy and I have that enduring love.” Not sure if she was grasping the concept — do any of us? — I asked, “Do you know what enduring love means?”
As Johanna often understands and communicates through pictures, she answered my question by positioning her tiny hands in front of her face, palms upward, slightly cupped. And then with one concerted motion, as if in tune to a melody only she could hear, she flipped her palms to the other side, still connected, and gently pushed them forward like a bird taking flight. In that one orchestrated motion, our eyes met. Johanna was smiling and I burst into tears.
“Yes, I sobbed, “You understand enduring love better than even Daddy and me after 26 years. It’s just what you did, Johanna. Enduring love is like two cupped hands which together use the force of their love to push forward together and freely face the future, with love that endures.”
As the tears streamed down my face, the student patiently waited for the teacher to gain composure.
“Love bears all things, believes all things, hopes all things, and endures all things. Love never fails.” (1 Corinthians 13:7)