As a teacher in public school, I focused hard on helping my students “get it”. Solving math problems, writing an essay, processing content knowledge, organizing materials, staying on task, learning how to study, getting along with peers. Teachers work at being proactive with the environment, structured in time management, and intentional in use of instructional strategies to facilitate success. School life is full of keeping pace with productive routines, setting goals, and charting progress on a daily basis.
I feel sure many households operate in the same manner. Organized, built on routines, regularity, focused on measurement. Not mine. Our measurement was a door frame with marks, dates, names, and heights of five kids as they grew through the years. Not that I didn’t have good intentions. I had grocery lists and to-do lists posted everywhere and was a master multi-tasker. Our measurement of a good evening or weekend was enjoying the boys’ ballgames, eating out on the way, relaxing around the house, getting at least one project accomplished-which sometimes was a lot of laundry, cleaning up the house, or getting school uniforms ready for Monday. We packed up the girls and hauled them everywhere in attempt to keep up with the flow of life with teenagers. I attribute the more relaxed lifestyle in our home to an easy-going husband who set the tone and brought humor, music, and an emphasis on togetherness to our family time.
Erin responded well at school to structure. I know; I was her teacher in middle school for two years after I moved from teaching English to special education. In our self-contained class, she followed the lead of other students. She knew the routine. She sat up straight, put her chin up in the air, and raised her hand to answer questions while addressing me as “Mrs. Feathers.” She worked with her previous teacher for months to fix her breakfast at school in the mornings when she arrived at school, which was an Eggo waffle and syrup. She would repeat, “1-0-0-start” to heat it up for one minute independently. On occasion, I would hear the microwave ding on Saturday mornings. I’d jump out of bed realizing she was up and wondering what could be in the microwave. I’d find her sitting at the table eating her breakfast alone. She remembered. She got it and would look over at me to see if I noticed.
Once in awhile, she would get a piece of paper and pencil and sit beside me. She’d ask what we needed at the store. Erin could only write her name independently. Some years, she’d drop letters off of her signature, and we’d have to work to get them back in place. She could copy a word from a piece of paper. She could write down a letter as we spelled it aloud. She could not write sentences or words independently. She’d sit up straight and look to see if we were watching her write. When the grocery list was completed, we’d go shopping.
When she got it…unprompted…when something stuck with her, we responded.
There were those times that she’d learn a word or phrase that we’d have to unlearn. She probably heard most of them in our house. I’d remind the boys to not slip and say a curse word, and they were pretty careful. Thankfully, she never learned one. If she did learn a word we didn’t want her to say, she’d commit it to memory, say it, and then say, “Erin, don’t say it!”before saying it again. One of the words we had to undo was “stupid”. We replaced it with “stupendous”. I’d hear her yell,“Say stupendous!!” from the back seat in the car to correct me if she ever heard me tell Rob I felt stupid in a situation. She got it…
When we’d get home from school each day, I often watched a rerun of NCIS before I fixed dinner and while Erin rested on the couch beside me. She’d color or curl up in a blanket. She didn’t watch or comment. I’d look over and wonder if she noticed on occasion when Gibbs was talking to Ducky in the morgue. One day, she went upstairs and returned carrying a naked baby doll in her open hands very carefully and stopped in front of me. The legs and arms of the doll were wound in hair ties. In a serious tone, she said, “Mom, she’s dead.” She slowly placed the doll in my arms and returned to the couch to color.
She got it…
When Erin came home from the hospital, we didn’t know what she understood of what had happened to her and how life had changed. She didn’t express it. She didn’t ask. We focused in the moment and tried to make it an adventure to whatever extent she could handle. These were always short trips out. One of the last ones was to the downtown mall in Charlottesville, one of Erin’s favorite places and ours on a trip to town. It was a Sunday evening in late January of 2017. It was raining, but she asked; and at this point, when she asked, we went. Rob pushed her in the wheelchair. Diana and I held umbrellas over them. We all sang “My Favorite Things” from The Sound of Music as we walked down the mall, which was one of Erin’s favorite movies. But I did feel sad.
February 3rd was a good day. We were scheduled to go to court in the afternoon at the courthouse in Palmyra to make a case for Erin’s guardianship. Erin had turned 18 in November. We had begun the paperwork before this date to file for guardianship. Erin could not make decisions for her life independently. We needed to continue to make decisions about her medical care. After a long morning of clinic appointments in the Battle Building of UVA, we drove back to Palmyra to the courthouse. We had previously met with a lawyer who specializes in guardianship and power of attorney cases for individuals with disabilities as they enter adulthood. He came to the house to talk with us, meet Erin, and go over the details of how we would proceed.
The week before the court date, a guardian ad litem came to our house to meet Erin and talk with me. She had a busy schedule and was only available in the morning before Erin had finished her dialysis cycle. She had to actually see and talk to Erin, so we went upstairs to Erin and Diana’s bedroom, squeezed around the medical equipment, and sat on Diana’s bed. Erin was awake and clutching her stuffed kitties, Beum and Hardy. She always watched Frozen in the mornings while I took her off the cycler and we waited for her vitals to get stronger before trying to move downstairs. Erin was ignoring the strange woman sitting on her sister’s bed but occasionally cut her eyes angrily at her. I was saying to myself, “Don’t say it. Don’t say, ‘Get out of my room.’” The woman asked me several questions. One was, “What’s the plan for long-term care?” I was silent for a minute but looked over at Erin’s dresser at the picture frame that had a flash drive of pictures of Erin’s healthy life. I had asked family, friends, and teachers to send me pictures of Erin when she first woke up and came off intubation for good at the hospital. I loaded them on the frame, so Erin could see all the people who loved her and were waiting for her to return home. I had realized in recent weeks the pictures of Erin jumping on the trampoline and attending school were not things she would experience again. I had turned the picture frame around. I don’t know if it was so I couldn’t see it during hours of setting up, monitoring, or breaking down all the plastic tubing and bags associated with dialysis. Maybe it was so Erin wouldn’t see it. I didn’t look at the frame when I handed it to the guardian ad litem. While she looked at it, I said, “There isn’t going to be any long-term care.” I didn’t plan to say it. I just said it. It was an empty statement but full of obvious truth. The woman didn’t say anything or look up or at me, but I felt her sadness in that moment as she breathed in. She left quietly soon after she read a statement to Erin that was full of language about giving up her personal rights. Erin only glared at the woman for talking during her show. That was that.
The visit to the courthouse was much different and something I will cherish forever. In my mind I had imagined the lawyer going up to the judge to present a document when her case was called while we sat in the audience. There was no one else in the courtroom. Rob and I were instructed to sit with the lawyer between us at the table that was in directly in front of the judge. Erin was in her wheelchair facing his stand. The judge entered. The conversation turned to the lengthy file on Erin. Erin sat quietly. The judge talked to the lawyer about the file, which he indicated he had read in its entirety. Erin began to realize the conversation was about her. She had no understanding about why we were there. She knew that man in the robe was talking about her, so she sat up straight and looked up at him with a big grin and giggle. She put her hand close to her face and waved a flirty wave. The judge smiled and waved back at her. While the talking continued, they continued to wave back and forth. When asked by the judge if she had anything that she wanted to say, Erin said confidently and loudly, “My dad takes care of me.” Everyone stopped and looked at her. Then she added, “I love my dad. I love my mom. My mom and dad take care of me.” She looked at us to see if we were listening to her say it. She got it…she knew. We loved hearing her say it. She left us ten days later. We’ve talked about that day many times since. Of those last days, it’s the one we choose to remember. It was priceless. I won’t say she knew how much we would need it after she left and as we have processed the fact that we couldn’t save her no matter how hard we tried. What matters now is knowing that she knew she was loved. Unprompted, she told us she knew. She got it. She gave us that knowledge…a final gift.
Sorting it Out... 