Jessie Dunleavy

Cover My Dreams in Ink: A Son's Unbearable Solitude, A Mother's Unending Quest


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always thought Paul’s intuition and his emotional intelligence were strengths. Every teacher Paul ever worked with had emphasized his remarkable capacity for empathy and compassion. When Paul was barely six years old, he asked me, “Do you like going to work?”

      My answer, “Yes, I do,” apparently didn’t satisfy him.

      “But how do you feel when you get there? Do you feel happy? I mean, when you walk in the door, how do you feel?”

      Around this same age, we went to New York City for several days during a school break. Just after we hopped in the back of a cab, Paul looked at the driver, then turned to me. In a decibel I would’ve reserved for announcing an imminent safety threat, Paul asked, “Is he happy?”

      Trying to soothe his concerns without involving the cab driver in our conversation, I quietly replied, “Yes, I imagine he’s happy.”

      As Paul continued to look at me, I knew my credibility was tanking—by no means a first.

      He then matter-of-factly said, “He doesn’t look happy.”

      A day or so later, we headed out for sightseeing and dinner. As we waited to cross 57th Street, we saw two homeless men sitting on a sidewalk grate. Bearing in mind the fact Paul was still worried about the cab driver, one can imagine the number of questions this sighting inspired. When Paul wasn’t hungry for his dinner that evening, I didn’t think too much about it until he asked for a doggie bag. Then I knew what was coming. As we headed back to the hotel, he asked that we retrace our steps. No words were spoken, but Paul delivered his dinner to the two men.

      We went to Disney World when Paul was twelve and Keely fifteen. Paul loved everything about the experience and at the end bought a picture book he actually slept with for weeks. As we were driving home from the airport, and Paul was looking through the book for the thousandth time, he asked me, “Was that trip expensive?”

      I frankly don’t remember my explanation, but I do remember saying, “Why do you ask?”

      Paul replied, “I just want to make sure I can do the same thing for my children.”

      I could write pages about Calvin and Hobbes—his beloved gerbils—and Ruff-Ruff—a stuffed dog Paul loved like a human and made things for—a house, clothing, and, I’m not kidding, a baby book. Don’t you know when I cleaned out Paul’s apartment, I found Ruff-Ruff at the bottom of a trunk Paul had moved from place to place over the years, wrapped in a baby blanket Paul also had saved for sentimental reasons.

      Just a couple of years ago, Paul told me he had seen the movie Twelve Years a Slave. In recounting part of the story, he started to weep, which I could tell caught him off guard. Even so, he continued telling me about it through his tears. “All she wanted was soap, Mom. She was beaten because she used a little piece of soap. I don’t think you should see it. It’s just too sad.”

      In addition to Paul’s genuine concern for others, he was insightful. Because his social cueing was an area of weakness, he was often isolated in a group situation. But he would later report to me what he took in about others. He spotted the disingenuous with remarkable accuracy as he did those who were truly kind.

      He just read people. And he amused me with his reports. Recently, he asked me, “You know that friend of yours who walks her dog in the neighborhood?” I answered, “Elizabeth? Donna?” He said, “I think, Elizabeth . . . Well, anyway, she worries about me.”

      “That doesn’t surprise me either way, both are sweet people and my friends, so it stands to reason.” I said. “But how do you know?” I asked. “She just does.” I, of course, knew my friends were concerned for his well-being and somehow Paul knew it too.

      I learned to rely on Paul’s intuitive gifts. I also came to know that the disabled are often more keenly aware of authentic kindness for the simple reason that one can indeed judge the character of a person by how he treats those who can do nothing for him. When Paul said someone was kind, I knew every single time that he was right. He was well wired to assess the difference between acting nice and being kind.

      *

      PAUL WAS ALSO a creative thinker and benefitted from teachers who recognized this and stimulated him to think more deeply. A recent reminder came to me in a sympathy letter from Paul’s homeschool teacher, Gretchen Nyland:

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      May 2017

      Dear Jessie,

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      I cannot hope to “alleviate, assuage, take away, appease, soothe, allay, mitigate, ease, lessen, soften” your grief. This was our method—Paulie’s and mine—to think of all the ways we could express one thought and then end up in the dictionary amazed at how many more ways there were.

      %%%

      He shared with me a good year of his young life. One that I’ve always cherished. Perhaps because it was one on one—and our attention was always with each other for those hours each day.

      %%%

      I can’t imagine your grief for losing Paulie. I can only hope it will subside, abate, lower (“Not as many good words here,” Paulie would have informed you.)

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      It is probably hard to smile right now, but it will come back as you remember the goodness of his life, for he was a good, gentle person—gone too soon.

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      I’m sad, but smiling in thinking about him.

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      Much love,

      Gretchen

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      In thinking about the school situation, I knew we were fortunate to have Paul’s homeschool teachers as references. They all loved him, and knew him well, which I figured would help us live down the regrettable circumstances that had tainted his applications the year before.

      When Paul was accepted to the summer session at The Lab School, I was thrilled! It was a very good sign, I thought. They would have time to get to know him, and there was no doubt they would love him. Everyone did. The summer session ran from late June through mid-August, and Paul’s medication changeover began in early June. Knowing that the transition period would be hard for Paul, I was eager to get it behind us and was focused on realizing its benefits in time for his Lab School classes.

      To reach the optimal dosage of 100 mg of imipramine per day, the plan was to start with 50 mg and, after obtaining EKG results and consulting with Dr. Roberts, to increase the dosage by 10 mg—with this pattern repeating every four days. I had this sequence mapped out on a calendar and felt confident about the time frame. If I was efficient in getting the EKG tests, we would be in good shape.

      What I didn’t anticipate was the lag time between submitting the lab test results and Dr. Roberts returning my calls and sanctioning the increased dosage. As we stalled in the changeover process, I could see that Paul wasn’t functioning as well as he did on a full dosage of either medication regimen, and I deeply regretted making this change during this critical time.

      Apparently, my voicemail messages—pleading our case—fell on deaf ears. And the excruciating delay in response from the doctor at every possible turn landed us in the last quarter of the summer program before the medication changeover was complete, at which time, as we had expected, Paul began to function at his best. This was heartening, for sure, but was it too late for him to demonstrate his strengths in a setting where he had little time remaining? And where he had not been himself for the first four or five weeks of a six-week program? Needless to say, I was incredibly frustrated, which I lamented to Dr. Watkins more than once during those painful days as I felt my hopes being thwarted yet again.

      In spite of the challenges beyond Paul’s control, he enjoyed the summer program, and his feedback to me about his experiences was encouraging. He spoke each day about his friends—Matt, Seth, Kia—and the course work, the field trips, and the projects. He never complained about the ride, left the house