Five a.m. walk

NOTE: I tried over and over again to make the paragraphs show up. I haven't posted in awhile and apparently don't remember how to get paragraphs to show up here. I'm sorry, but I still want to post this even though it will be hard to read! It is hard to believe how much the prairie can change in just a week and a half. The golden Alexanders and beardtongue litter the bike path with yellow and purple. Monarchs settle onto the tight buds of milkweeds, impatient. Birds of all kinds squawk and sing loudly enough that I can barely hear my own thoughts--which is a relief. At five a.m., and, after an hour of trying my best to overcome my panic with meditation and prayer, I finally get up and start walking, half-dazed, toward the bike path that will take me on a seven mile hike through prairie. The fog is thick enough in places to make the path feel most intimately familiar and completely unclear--much like the path I'm walking at the moment. For the last four years and two months of my life I have been battling my daughter's school practically daily just to ensure that she get a good education. I take that back. I had expected a good education, fought for it for two full years at the beginning. Then I gave in, took things into my own hands. I let her stay in the building just long enough that she would still get her diploma from the school, then homeschooled her for the rest of the day. For the subjects she was taking at school, I eventually stopped expecting her paras to help her learn to take notes or even to understand her assignments--I began communicating directly with her teachers and doing my best to help her complete assignments and study for tests at home. In short, I stopped expecting the school to help with social skills or life skills or notetaking or, well, anything, really. But, I wanted her to have the experience of sitting in a classroom, being around peers, even if only for a couple hours a day--and honestly, I couldn't quite afford to cover the cost of her activities for an entire day. The schedule worked well this year until three boys in S's grade began to harass her, and the school was unable to effectively deal with the bullying. She decided she no longer wanted to go to school. At first, I fought her on this--she was a month away from graduation, and surely we could come up with some coping mechanisms to deal with this, even if the school wasn't doing its part. But then her therapist told me in no uncertain terms that it would be a mistake to make her go back into an environment where she didn't feel safe. Around this time, her piano teacher, who was also a substitute in the school and the Gay Straight Alliance advisor, was fired for coming out to his class--that was, for S, the last straw. "How can I feel safe in a school full of bigots?" she asked me. Finally, I listened. We had an IEP meeting at which I said clearly that S would still graduate, that her missed days were entirely the school's fault, and that they would agree to allow her to complete her two remaining required courses from home. They agreed. In the midst of this trauma, we began to explore our options for next year. We revisited the assessments she had done last summer and the recommendations that had come from those, and went about visiting each recommended program. To make a long story short, S and I chose a program that seemed ideal in every way. Only 45 minutes away, it offered her the opportunity to learn social and life skills and to get some job experience with animals. We had another meeting with the school a week ago to finalize the paperwork for this program. Everything seemed to be in order. The meeting went well, and our local school district agreed to hold her diploma and provide transportation--which they are required to do by law. She would be able to walk through graduation if she had completed her academic classes (which she has), but she would technically still be a high school student until age 21 or until whenever her team decided she had learned all she could from the transition program. I went home and told S the good news; she had refused to attend the meeting because she has panic attacks whenever she enters the school building. "I thought they were going to fuck us over," she said, incredulous. It took a couple days for the news to sink in, but once it did, she was visibly less anxious. She had good reason to believe the school would "fuck us over." A few days earlier, a school official had talked privately with me about how S is "really much more functional than the kids at that program," and I had gone home believing her until S and our family therapist talked some sense into me--we had visited, she wanted to go there, there was no reason to believe a school official who, although she's never met S, is now somehow involved in making this decision. When I showed up to the meeting a week ago, I expected a battle, but we didn't have one. This official said she would prepare the paperwork, and I could sign it the following week. By Thursday, there still was no paperwork to sign. On Friday, she called to say she was calling another meeting because S had not been admitted--her IQ was too high. I was flabbergasted. We had visited twice, talked with the director multiple times. She had told me a week earlier that her supervisor had agreed to admit S. I called her, and she said, "I have no idea what they are talking about." I called the school official back and said that there must be some misunderstanding--the program was ready and willing to accept her. No, she said, that's not what she was hearing. Well, I asked, can we all get into the same room and talk about this in person to clear up the misunderstanding? Oh, if my supervisor thinks that's necessary, he will invite the people from the transition program, but it's probably not necessary. Luckily, I knew my rights, and told her I would be inviting them. I pressed her, saying, "If this turns out to be a misunderstanding and they have, indeed, accepted S, will the school district allow her to attend the program?" No direct answer. I had caught her in a lie, and she knew it. I am back to lining up my allies, planning my strategy. A week ago I was looking forward to getting the house and garden ready for S's graduation party on Saturday. Now, I can't concentrate on all we have to celebrate--the arrival of beloved family members, the friends who have supported us so faithfully who will arrive on Saturday. It is so unfair--to me, to S. She went from being relieved that the school had not "fucked us over" to saying "I knew they would pull this at the last minute." Sometimes she is smarter than me. Which brings me back to my sleepless night. I walk for awhile, in a daze, down California toward South Street, not knowing exactly where I'm going until I'm on Columbia headed for the bike path. I am weeping, trying to catch my breath, glad it is too early for anyone else to be out. I text my significant other. "Awake?" My hand hovers over the send button, but finally, I send it, even though it iss 3 a.m. where she lives and she is most certainly not awake. Immediately, she texts back, "Yes, actually." I call her and burst into tears before she has even finished telling me that she'd had a bad dream and was lying in bed wondering if she should text me. So I walk into the sunrise with her on the phone, talking about the nightmare I am living and the one she dreamed. I walk past the gazebo where I remember first feeling the urge to kiss her. I walk past a field of milkweed plants she had taught me to identify, past the wind turbines, only one of which is spinning. I watch a doe cross the path just feet in front of me. She doesn't see me until after the fact--she pauses, turns back, and we lock eyes for a full five seconds before she turns and leaps into the distance. I tell my beloved what has happened, my voice full of awe. "I love that I can picture where you are," she says to me. "I love that I get to see you in a couple weeks." She won't make it to S's party--she is back in school pursuing a new career path and has finals the same week--but then she'll be here for the summer, and we'll see what living together for three whole months is like and what will happen next. It is a relatively new relationship, long distance, but it started slowly as a deep friendship last summer and grew into love over the phone and through a few visits back and forth in the last year. The bike path ends at a local highway just a half mile from the campus where I work. I cross the street and walk along the edge of the horse pasture, where S spent so much of her first year with me until Honey, the horse she loved maybe more than she has ever loved anyone or anything else, died suddenly. I am struck by the memory of this loss as if it has just happened, and feel it in my chest. I pass a grove a trees that have been planted in memory of employees and students who have died over the years. There were two smaller trees, but I can't remember which one we in memory of my student M, who killed himself two years ago--they are the same size and several yards apart, but I can't for the life of me remember where we were standing on that autumn day when we broke ground and put the tree in. Both trees are flourishing, so I run my hands over their leaves before heading home. "S will remember which one it is," my beloved says to me. "You're right, she will." S has a much better spatial memory than I do; she'll remember how close we were to the road when we planted the tree. I sigh. "I'm so glad you get us." "I'm so glad you get me." There is a short pause, and she adds, "I miss S, and you, so much. I can't wait to be there this summer." I felt the tears again, happy ones this time, and then I am on 7th Street heading toward my house, and I stop to chat with the two old veterans who are getting the flagpoles ready for the Memorial Day ceremony. My beloved sits patiently on the line, laughing because she knows how much I love to talk with old people. "I can't wait to come there," she repeats as I move away from them. I see two people putting up garage sale signs, wave at a passing biker. I realize it's almost 7 a.m. "Really?" I say. "Really." "I keep thinking I want to leave here. I keep thinking there's nothing left for me here, especially after how miserably the school has failed my family," I say. "But then I take a walk at five in the morning through the fog and end up a block away from home, and I can see the flowers in my front yard and I think about how beautiful this town is, how much I have loved living here overall. I've lived here almost as long as I lived in my hometown, you know?" "I know." There is a pause. "Do you feel better now? You sound better." "So much better," I say. "I can get through this. Whatever happens, there's going to be a party on Saturday, and then in another week after that, you'll be here."

The Weather

For the last two weeks, the fog has descended on and off, seemingly unexpectedly, lying down near the ground, thick as snow. Stepping out into it, I always half believe the snow is deeper than it actually is--as it should be this time of year--almost expect to hear a crunch when stepping even into well-worn paths. After awhile it will begin to rise like a veil between things, as if it were trying to remind us of how little we pay attention to our own neighborhoods, how easily we would walk into a tree or a hole in the ground if we didn't have our sight. I'm looking out the window, watching it rise slowly from thick blanket to veil right now, as I type.

T sends me regular texts about the weather; maybe because she lives in a place where people aren't nearly as obsessed with it as they are here, and, being a Minnesotan at heart, she needs to have this conversation, even with someone who isn't just a gas station attendant or server at a restaurant. And it has been unseasonably warm here, and although we now have a covering of snow, there are patches of brown grass visible that look like small, murky lakes on foggy mornings.

"It is important to stay grounded in the place you are in if you want to be a writer," I told my class the other day. "It's why I want you to learn about this place, to meet its elders. It's also why I want you to pay attention to the weather, and to the way people talk about the weather here."

Later, I ran into an elderly man--in his late 80s now--who mows our lawn and refuses to quit, even though I sometimes politely try to fire him. He just showed up one day, mowed, and asked me to pay him, and for some reason I just let him keep doing it instead of getting the mower fixed. This has gone on for three years. The truth is, I kind of like to talk to him on my back porch when he knocks on the door to collect his money. But I digress.

So I ran into him, which is rare in the winter, and he said to me, "Feels like March, don't it? Looks like we'll pay for this come April, and you won't see me around 'til at least June"--meaning, of course, that my yard was unlikely to need a good mowing until at least June.

I hope he's wrong. April snowstorms are common around here, but not particularly welcomed. But Minnesotans are practical people--they know not to get too comfortable with the weather, no matter what it is. They know that nothing ever stays the same.

Last week we drove to my daughter's weekly appointment two hours away, and it was sunny, the roads completely clear. The way home was a different story altogether: thick fog and snow coming down in sheets so that I drove the last hour at 25 miles per hour, likely annoying the long line of cars behind me that couldn't see well enough to pass me but would have been going a tad bit faster if they'd been at the front of the line.

I got home and texted T: "Thick fog, snow coming down in sheets. Finally winter. But we made it home safely, thank God."

Gratitude

It has been so long since I have written here, and so much has happened, that I hardly know where to begin. So instead, I feel compelled to list what I am most thankful for, right now, at this very moment in my life.

I am thankful for T, who really listens to me, who is willing to sit on the phone while I tell her the details of my day and is more patient and calm about whatever I'm saying, more able to be a witness and not a fixer, than anyone I've ever met.
I needed this more than I even realized.

I am grateful for my friend J, who is always honest with me.

I am thankful that I have learned to be a witness, to sit at the edge of a person's pain and hold it without becoming it. Even, when I am most centered, to sit at the edge of my own pain and hold it without becoming it.

I am grateful for my daughter's opportunity to volunteer at the Humane Society, for the board that welcomed her, for the college student H who goes with her. She belongs again in a way that she hasn't in so many years. She is beginning to imagine herself as someone who could care for animals, and make money doing it, sometime in the future.

I am grateful for all the people who have hired her to care for their animals.

I am grateful for the times when I am able to breathe when I think of the future. I am grateful that I now only get a knot in my stomach, a panicked feeling in my throat, about half of the time. I am grateful because I know I am making progress, and that sometime in the future, I will be able to breathe through these moments more, if not all, of the time.

I am grateful that we just learned yesterday that S's littlest brother has found a permanent home. I am praying it will really be permanent, that the family will have the strength and clarity to see him through this year, and the next, and the next, and the rest of his life.

I am grateful for her other brother and his adoptive father, who welcomed us for Thanksgiving, who are now truly a part of our family.

I am grateful that in October I got to perform the weddings of four people I love deeply, for how moving those weddings were, and for the chance to do it all again for another couple I love in January.

I am grateful that, in this culture of immediate gratification and so much uncertainty, people are still willing to commit their lives to each other and to find a way to live in love.

I am grateful for our beautiful live Christmas tree, and for all the people who stopped to help us get it back on the top of our car when it toppled off, and for the moment when my daughter said to me, "We are so lucky to live here. This wouldn't have happened anywhere else."

I am grateful for the students who have helped to create and sustain an ESL program for new immigrants in our community--for their patience with the disorganization and chaos of the day to day struggles of getting such a program up and running, and for sticking it out, lesson plan by lesson plan, day by day.

I am grateful for my new coworker, who has relieved me from 20 hours of work a week and so much more. She is a calm and thoughtful presence who is already making a difference in my stress level in her first month on the job.

I am grateful that my supervisors finally truly heard and took to heart my need for more help.

I am grateful that I have lost almost 20 pounds in the last two months. I am grateful that my decision to focus on my body has led to more energy, to a sense of control over my life, to more self-confidence. I am grateful that I am no longer using food to relieve my stress. I am grateful for Weight Watchers and the awesome people in my meeting.

I am grateful that for the first time since adopting S I'm beginning to make progress on my debt. That I had the clarity to realize that a trip to Greece would have been too much for us, emotionally and financially, this summer.

I am grateful that I have six more months to work with Lisa on a post-high-school plan. I am grateful that even though she hasn't passed all the standardized tests her grades are good, she's working hard, and there is still a way for her to graduate in June.

I am grateful that I was able to run into my ex recently and have a real conversation that contained no bitterness or anger or pain.

I am grateful for the church I attend, and for the amazing minister there. I am praying that, although she'll have to leave, I will be able to keep this church home, or that, at the very least, I'll be able to feel sustained by the time I was able to worship there.

I am grateful for healing, and forgiveness.

I am grateful that my daughter told me today she was the luckiest person alive to have a mom like me--that even when things get hard, I know she gets how much I love her, and how hard I'm trying.

I am grateful that I am feeling happy more often than sad these days. It has been so long since I could say that!

Summertime: On Gratitude, Grief, Patience, Hope, and Family

On Gratitude
“What do you think would have happened to me if you hadn’t adopted me?” S wanted to know one afternoon, as we were making the long trec from our hometown to where my aunt, whom S calls “yiayia,” or grandma in Greece, lives in Detroit.

“I don’t know,” I said honestly, because I don’t.

“I don’t think it would have been good,” S said. I let that statement hang in the air as we passed some horses grazing in the distance along the highway. I didn’t know what to say. The truth is, we still don’t know what will happen, exactly—and that has been a major stressor all summer.

“I’m so glad you adopted me,” she added, “and that you love me so much.”

We both took a deep breath. “I’m so glad you love me so much, too,” I said.

She put the seat back and tried to nap. The dog in his backseat kennel stirred, looked over at her, and lay back down.

---

On Grief

This summer has been a time of major growth for both of us. Thanks to two good friends—one a long-time, old friend whom I’ve gotten to know a lot better this summer, and the other S’s most recent “college buddy,” actually a slightly-older-than-college age woman who has had an incredible impact on S’s life—I’ve found my way out of a depression that lasted more than a year. The depression was brought on by the death of my student and the losses, through death or moving, of so many other good friends and beloved family members this past year.

Both friends were going through major life changes and dealing with memories from their past, and our time together started with me finding a way to open my heart to them—to not hold back in how I helped them as I had been doing, unconsciously, for far too long out of fear of getting hurt by loss. Whenever we grieve, all of our past, unresolved griefs are unleashed again, and we have to struggle to figure out how to live with one foot in the present and one in the past. It becomes difficult to think beyond the next moment, or to love anyone, because loving yourself is a full-time job.

But I was clearly called to help these friends through crises, to put my own grief on hold, to step out of the dark place where I had been hiding. And, in time, our conversations developed into truly reciprocal friendships, and I felt cared for and loved, like someone finally knew the day-to-day details of our lives enough to be there for me through all the ups and downs.

One of them, Lisa’s college buddy T, will leave in a couple weeks, which will be incredibly hard for us—but for once I don’t feel sad that we got so close and now I will have to lose her. Instead, I feel grateful for all she’s done for us, grateful that I was able to be there for her, grateful that I had, even for a brief time, someone with whom I could talk late into the night, could completely lose a sense of time around. It has been so long since I’ve had a friend like that in my life.

---

On Patience

All summer we have been grappling with a variety of social service agencies, the details of which I outlined in an earlier post. We have been trying to determine what resources S is eligible for as she enters her senior year of high school, and because none of these agencies communicate with each other, it has been quite time-consuming.

I was working half-time this summer, and so I set my schedule to be 8:30-1:30 four days a week (at work) and another day with the same hours which I spent at the coffee shop struggling through forms and phone calls and other details related to S’s care.

It paid off; in the end, I was able to leverage more assistance than we’ve ever had, as opposed to less. Adoption assistance will continue until she graduates high school. A very helpful social security worker, while not succeeding in getting S disability payments, figured out that she was owed payments from her bio parents—and we got, quite out of the blue, a very large check for back payments, and will continue to get a check every month until she graduates high school. And, we got a family support grant from Human Services.

What this means is that I will be able to pay all of S’s tutoring, child care, and job coaching with resources other than my own—and begin to make some progress on my debt, not to mention always have enough money to pay our bills and for other necessities. It is a great relief.

There are a few items that still need to be resolved—my insurance and her MA which covers the co-pays for her meds and therapists are now refusing payment on many services, and I’ll be in a battle with them for the foreseeable future; I didn’t get my tax refund because the federal government is suddenly, for the first time, suspicious about whether S was actually adopted and actually has special needs (OK, federal government, here are the 70 pages of assessments she’s had in the last year proving she is)…etc.

But somehow I am managing to, well, manage. I am not feeling nearly as panicked as ever before. Even though all of the resources we have will be cut off once she graduates, I now have a year to figure out what to do, as well as a very helpful social security worker who thinks she can get S qualified next year for disability (once the other resources are cut off) and a very helpful social worker.

T, S’s college buddy, helped her get ready for pursuing a job for this coming academic year, and she now has a long-term placement with the local Humane Society. It is a perfect fit for her--she wants so much to do the job well, and she is in love with the animals. I just hired a new college student to be her job coach, and I’ll be able to get her credit for this experience.

The school was, as usual, totally unhelpful in this process, and didn’t answer any of my questions about whether this experience could count for credit until three days before the start of the new year. The answer was yes, but only if a paraprofessional went with S to the site during the work day. By this point, S had gone through her training (which the paraprofessional would have had to complete, and which isn't available during school hours) and was scheduled for evening hours—and the Humane Society isn’t in need of help during the periods when the school had scheduled her work experience.

So, I gave up and said I was going to home school her in the work experience, math, and her fine arts credit (she’ll be taking piano again this year). I decided this was easier than trying to negotiate. Ultimately, even though it was utterly flawed, I also decided not to fight the evaluation the school did—I have given up. I have decided I will get her through high school with a combination of daily communication with her teachers and some homeschooling, and that trying to use the special education department to help is pointless. She will have an IEP, and I’ll fight for it to include the accommodations she really needs—but ultimately, I realize I need to do most of the work, to communicate directly with teachers and not expect the special ed department to help either with organizational skills or academic skills. I know this may sound defeatist, but I have wasted so much time and energy communicating with her special ed teacher and the staff in the room, and I’ve finally realized I need to eliminate this stress from my life.

And…it’s only one more year! After that, I’ll likely need to advocate for her with other people and agencies, but I can’t imagine any advocacy that will be more difficult than what I have been through with the schools.

I am learning, slowly but surely, to let some things go if they truly can’t be resolved, and to find creative solutions for them. I am learning, slowly but surely, to stay present in the present and not be obsessed with the future. And, I’m learning patience. I feel like there have been so many utterly amazing gifts, and so much growth, in all of this.

---

On Hope

In June, S had her first seriously violent episode in a long time. Her ballet obsession had become all-consuming after her recital in May. She got violent with both T and me when we tried to set some limits on her obsession. So, I cut her off altogether. This involved a very difficult conversation with her teacher, who had been part of the problem all along—a good, kindhearted person who really cares for S, she had not been able or willing to be honest with her about her abilities in the area of dance. S imagined herself as being graceful and beautiful on stage; she could barely follow the steps. I realized her teacher had put her on pointe much too early, and that the result had been incredibly damaging to S’s understanding of the work that is needed to make achievement in any art.

After a month off completely, she has been, for the last month, allowed to dance, read about dance, or watch dance videos for a half hour each day—but most days, she forgets to ask for this time. I also bought her a new pair of pointe shoes over the summer to show her that I would be willing, someday, to let her dance again—but that she needed to learn some limits.

She goes back and forth. We had another incident last night where she said, “I’ve been doing really well with my limits, so I’ll start dance again when school starts, right?” Well, no. We had decided that the very earliest she would be able to start again would be October, after at least a month in school, and that she would have to agree not to be in any recitals, as they tend to cause a lot of the obsessiveness. But, she wasn’t satisfied with this answer—again. This time, though, she apologized within 24 hours for resisting the rules we had already set up.

It is hard for me to write this next part. When she got violent with me over ballet, during the incident that led to a complete cut off of any talk about dance, she tried to choke me. She realized quickly what she was doing and pulled her hands away--but she had her hands on my neck for long enough that I was scared. She was so sorry—immediately sorry, for the first time ever, maybe.

But then, two days later, we learned that a boy she’d known from school—another student in the special ed department—had choked his mother to death last Christmas. The case was finally closed—he had admitted that it was him (and his brothers) who did it. News like this can’t be easy for anyone to take in—but imagine if you were the same age as the boy and had sat next to him in the Resource Room. Imagine if he had been quiet but likeable, although you had been bothered that he called the room "the retard room," and wished he would stop. Imagine if, two days before his arrest, you had put your hands around your mother’s neck and squeezed. How could you ever trust yourself again?

S was devastated. It took many long, hard conversations to make sense of what had happened. The image of violence laid out in the local paper—so many details—led to nightmares and memories from S’s past. But I feel as if she came through this hard time stronger, with a deeper sense of who she is, and a deeper understanding of how her actions affect others. It has been amazing to see her growth.
---

On Family

We took an epic road trip with our dog to see my aunt this summer; we had never been to her house before, because we usually meet in Ohio where the rest of my extended family (except for her and my sister) live. We had also never had an opportunity to spend a lot of time with just her and her husband—even when she has visited, time always felt hectic.

It was the best vacation of our lives. We had a wonderful party for S’s 18th birthday, and several family members came up from Ohio or from other parts of the Detroit area. We went to the zoo and to Greenfield Village, an old-fashioned village S absolutely loved. We stopped in Chicago for a day on the way there and in the Wisconsin Dells for a day on the way back. We had long mornings of playing with our dog in a fenced-in backyard and long evening conversations with my aunt and her husband on their screened in back porch. I felt so lucky to have this family, to be so deeply loved.

My family is hardly completely functional, to say the least. My mother’s death when I was 13 affected all of us, and the family dynamic, in so many ways. In the more than 25 years since then we have had times of deep connection and disconnection—but all of that seemed so far in the past when we were together this summer. I realized that although things have not always been easy, I have never had to question, as S did for the first ten years of her life, whether my family loved me. Even my father, at his most abusive, clearly always loved me—though he made a lot of mistakes in knowing how to show it.

I have that safety net of love that has always held me up, even when I’ve felt like an outsider among my own family, even when they have deeply hurt me or haven’t been able to accept all parts of me or my life. And now, S has that love, too—she knows at a deep level that we aren’t going anywhere.

In some ways, being part of a family—and, for that matter, opening oneself up to deep and real friendships--means being willing to get hurt, being willing to experience loss and failure, but knowing you will still be loved and that you are still capable of loving.

Last night S wrote me an apology after a fight that, in the scheme of our relationship, was relatively minor. She gave it to me this morning. In the letter was this line: “I know you will always love me no matter what I do. But I am still sorry.” That’s the kind of certainty everyone should feel about their relationships with the people they love.

That’s not to say we should allow ourselves to be abused or that we shouldn’t set some limits on the ways we are treated or treat others—but that we know we can forgive and be forgiven within those limits we set for our own safety and sanity. I am glad to have learned this lesson this summer—glad we have come so far—and I feel hopeful about this coming school year, which, for S, begins in three short days.

Memories of Thea Angeliki

The night I learned Thea Angeliki had died, I was on an annual retreat I take, and I had briefly interrupted the silence to spend a couple hours in a writing workshop about belonging. The facilitator asked us to list the people and places to whom we belonged, and then to choose two of them and write about them. For reasons that weren’t clear to me at the time, I wrote Thea Angeliki’s name down—and then decided to write about her. This is what I wrote. Two hours later, in my room, I was weeping because I had a message on my cell phone telling me Thea was gone. I’m sorry she never got to read this, but I wanted to post it here and to pass it on to others who loved her.
-----

In my first memory of Thea Angeliki, she is standing at her kitchen counter talking to her cat, and my sister and I are looking at each other across the table and smiling. My mother was with us, as was my aunt Katina, and because my mother was well, I know I must have been younger than 10 (unless this trip happened in one of the brief six-month periods of remission between 1980-1984). My sister and I had been in plenty of Greek widows’ homes, but we’d never known a Greek woman to own an indoor cat, much less to talk to it.

I remember I kept staring at her. She looked like my grandmother in the face, but she was so small, and she moved so quickly and confidently. It was hard to believe she was family. On the ride home, I asked my mother some questions about her—why did she seem so different from Yiayia? My mother and Thea Katina laughed. By way of explanation, my mom simply said, “She’s one of a kind, all right.” That phrase stuck with me because I didn’t remember my mother ever using it before.

I know I saw Thea Angeliki several times between that visit and my 20s, but my next clear memory of her is a raucous Thanksgiving we spent together at her nephew Chris’s apartment in Phoenix when she was visiting while I was in graduate school there. At some point that evening, Thea Angeliki told me she had the family gift of reading fortunes and asked if she could read mine. I said she could.

She took one look at my cup and got the most worried look on her face. “You are going out with a really bad person,” she said. “This person is going to really hurt you. Is this true?”

“I don’t know,” I said. I looked away from her. I couldn’t admit the obvious to myself, even though the signs were already there. I would like to say I left that Thanksgiving dinner and broke up with my significant other immediately—that would make a much better story to tell--but unfortunately I pushed what Thea had said out of my mind and stayed for two more years. Things got continuously worse and worse.

One winter afternoon a little more than two years later, after a fight, I drove to the base of South Mountain and climbed to the peak without stopping once, without even noticing the blooming ocotillo and saguaro or the view, without even bothering to put on the hiking boots I always kept in my trunk. What am I supposed to be doing? I asked out loud when I got to the peak to no one in particular. And then I screamed, How did I end up here?

That’s when I saw the rattler. It was right by my foot. I tried desperately to remember what I was supposed to do—run? Stomp on its back? Stand still? I don’t know exactly what happened, but the next thing I knew, I was startled awake by the sound of Thea Angeliki’s voice: “You are going out with a really bad person.” I was sitting on a rock with my head on my knees—I am not sure if I had simply curled up out of fear, or fallen asleep—but either way, the snake was gone, and I was certain Thea was sitting right next to me. She wasn’t of course—she was in Detroit, probably totally oblivious to this experience.

I hiked down the mountain, slowly. Everything, I realized, was in bloom. I didn't have to be afraid of anything, because no matter what happened, cacti would still bloom every year, the mountain would still be there, and sometimes I would be able to avoid dangerous situations--and when I couldn't, I could draw on the strength of the people who loved me and on my own inner strength to find my way out.

I went home and began to pack my things. It took two years for her words to work on me, but eventually, they gave me the strength to get out of that relationship.

About six months later, in 1998, I went to Greece for the first time as an adult, something I never would have been able to do if I’d stayed in that relationship. I needed to see Ikaria, to reconnect with family I hadn’t seen in almost 20 years—but I also needed some time away from Phoenix to figure out what I was going to do next.
I ran into Thea Angeliki in Evdilos and ended up staying with her on the first floor of Thea Aglaia’s home.

I feel so lucky that I was able to spend that week with her. We made coffee every morning—she said she needed a little time to enjoy the morning before going upstairs for breakfast with Aglaia. I don’t remember much about what we talked about, only that our time together felt peaceful. Then we would go upstairs to sit with Aglaia. Angeliki would try to get her to smile, to tell a story, to interact in some small way with us. Sometimes she would tell part of a story, or affirm what Angeliki had just said, smiling a little to herself—but that was all. Then we would try to get her to take a walk with us, to do anything besides sitting in that little dark kitchen. She would always decline.

At first, Angeliki was gentle, but toward the end of the week I spent there, she began to get frustrated. “You need to take off that black dress and enjoy your life a little, Aglaia,” she said one day over breakfast. “It has been years since he died.” The “he” was her son, who had died in childhood. Aglaia blamed herself, and she had never gotten over it. Aglaia ignored her, but she told me over coffee during the siesta one day that if she could, she would burn all of Aglaia’s photos of the long-dead, and force her to stop living in the past.

I didn’t say anything. I felt for Aglaia. I was even strangely comforted by how much time she spent at her altar, where photos of her son and others long gone were situated beside icons of the saints they were named for. I wasn’t really over my mother’s death, even though it had happened nearly 15 years earlier. Coming back to the island was making me realize how little I knew about her—everybody I met had a story that I hadn’t heard, and while I loved to take them in, they also made me sad that I hadn’t been able to have more time with her. I felt both more at home in Ikaria than I had anywhere else and less at home, at the same time—and the contradictions the trip was bringing up in me would serve as the basis for much writing and self-reflection after the trip.

Of course, I also wasn’t over my break up. In a few weeks I would go back to Phoenix for my last year in graduate school, the year that promised to be hardest. I had no idea what was happening next. I felt caught in the middle of the past and the future—even though I was in the most beautiful place in the world, I couldn’t just be in the moment. It was impossible for me—there was simply too much grief and fear.
But then one day Angeliki walked me around the village and showed me places that had been a part of her history— her childhood home, the stone where her mother would grind wheat for bread, and, finally, her elementary school. “I had a teacher who was so mean to me,” she told me, “so now whenever something bad is going to happen, I dream of her.”

For some reason, that story reminded me of how I had dreamed of Angeliki that day when I was finally at the end of my rope. I said to her, “Remember how you read my cup when you came to Phoenix a few years ago, and told me I was in a bad relationship?”
I couldn’t read her face, so I’m not sure if she really remembered, but she told me she did.

“I got out of it,” I said.

“That’s good,” was all she said back to me. And then, after a long silence as we walked back toward the house, she added, “Life is too short.”

For the rest of that trip, I kept my eyes open. I stayed in the present. And because she taught me to do that, I knew I belonged to her as much as to my grandmother, and to my Thea Agglaia—but that I was going to choose to live life fully, to defy any old world ideas if they didn’t sustain me while also honoring my ancestors and being grateful for them.

The next day, I planned to go back to my father’s village, so that morning, I asked if Angeliki would read my cup. “I don’t think you need to have it read,” she said, not explaining why, but I understood. She had already given me the only advice I really needed. I was going to have to figure out the rest on my own, and instead of being terrified by that possibility, I was going to have to learn to rest in it, even to celebrate the uncertainties and unexpected twists and turns.

Thea Aglaia died a week later, and I went back to the village for the funeral. It was heart-wrenching for me; I suddenly realized how awful it was that all of her life had been focused almost exclusively on death and on what happens after, rather than on being present with the joys and sorrows of the present. I owed it to my mother, to Aglaia, to everyone who loved me, to live life in the present.

Angeliki lived to age 96. I saw her for the last time last year at the Pan-Ikarian convention in Detroit. She had dementia and was in a wheelchair, but she was so incredibly happy to be surrounded by family and friends. She looked radiant. I know caring for her at the end was not easy for her family, but when I saw her, at least, she seemed so incredibly and completely and deeply herself.

I wouldn't go so far as to say that those who know who they are, who define themselves based both on their web of relationships and on their own inner truths, live longest--but I do believe that in her case, the fact that she was, as my mother told me so many years ago, both "one of a kind" and truly in love with her place and her people made a difference in the length and quality of her life. I am grateful for this lesson.

Transition

"Wanting to find a place where everything's okay is just what keeps us miserable. Always looking for a way to have pleasure and avoid pain is how we keep ourselves in samsura (the vicious cycle of suffering during our life journey). As long as we believe that there is something that will permanently satisfy our hunger for security, suffering is inevitable. The truth is that things are always in transition. 'Nothing to hold onto' is the root of happiness. If we allow ourselves to rest here, we find that it is a tender, nonaggressive, open-ended state of affairs. This is where the path of fearlessness lies." --Pema Chodron, Buddhist nun

So many things right now are in transition, uncertain. I am in financial crisis again--the adoption assistance check didn't come on time (which happens every July, but this year, I forgot about this and didn't plan for it), the state government has shut down which will mean I am paying for more of Lisa's services (therapy, meds, etc) out of pocket. In some ways, this has been good for me. I realize I have never been good with money. I have always spent everything I earned. If I look back over the last three years, I see where I made my mistakes--I didn't have any savings when S arrived, I had to purchase a lot of basic necessities for her in the beginning, and then, a year later, my father got sick, so I made several trips to Ohio. In the midst of all this there was the trip to Greece, which I really couldn't afford but did anyway (I'd committed before my father got sick, but still). I had to keep using credit for these expenses, and now my credit is also maxed out. Of course I'm getting all kinds of invites to take on more--I've always been able to pay more than my minimum payment, so my credit score is good--but I've been throwing them in the trash.

S and I had a talk about paring back our expenses. It actually went very well. She's working on being alone at least a little more without major incident, so far, so that we can cut child care expenses. I have told her I'm no longer going to let her talk me into buying things we had not planned on, and that we had to really save for any big purchases like new shoes. We have been doing pretty well the last couple weeks, and as a result, although I had to ask her child care providers if they were able to wait another week for their paychecks, we are going to be OK. The adoption support check will come, and the state government will begin functioning again--it's all just a matter of time. But I know I need to figure out how to save even as I try to pay down my debt so that, when things like this come up, I have something to draw on.

In the meantime, I'm still waiting to hear about what kinds of resources she'll have after she's 18 (I wrote about the details of this early last month--I'm no closer to answers now, and the magic 18-year-old deadline looms). I have gotten confirmation over the phone that her adoption support is "very likely" to continue, but I've yet to actually get written confirmation. In the meantime, the other agencies are waiting for that decision before deciding what they will give us. Adoption support initially was going to wait for Social Security until the Social Security counselor, God bless her, got on the phone and ripped the Adoption Support people a new one for playing a game of chicken over our family's resources. Someone has to give, because everyone says she qualifies, but for how much will depend on how much other agencies will give us--so someone has to name an amount first.

It is easy to feel sorry for myself, but I have a good job and private insurance and, now, a plan to be debt free and have a modest savings in the next three years, if I can stick to my plan. I also only work half-time in the summer, so I have the time and space to do some long-term planning and to think things through. I can't imagine what the truly poor families that rely on state support are dealing with right now. S's co-pays, which are now covered by Medical Assistance, which kicks in when my private insurance is done paying, will amount to about $400/month--and that's WITH most of the cost of her services being covered by my private insurance. That means if we didn't have private insurance, we are talking about somewhere around $4,000/month--nearly twice what I make each month. What will a family with a child with a disability--and hers are minor, in the scheme of things, compared to what some families are dealing with--what will such a family do during the shutdown? Of course, some providers will simply provide services and medications for free out of an ethical responsibility to those with the highest need. S's therapist has already told me she considers her to be high need, so she'll continue to provide services even if she doesn't get the 50% out-of-network cost that she currently gets from MA.

I think one of my problems with the idea that groundlessness equals happiness lies in the fact that, if read too literally or in the wrong ways or with the wrong kind of theology in mind, I could decide to just sit around and wait for God or the universe or whatever to take care of us. But that is powerlessness, not groundlessness. There are things I can do, and I have done them--written and called our legislators, talked firmly to each agency about how I don't appreciate the game of chicken they are playing, and that someone has to step up and tell us in the next week how much my child is going to get so the others can make their decisions, and, of course, spending the countless hours applying for these things in the first place so that we can keep paying down debt and paying basic expenses.

But groundlessness--that is something different than powerlessness. Groundlessness is about knowing that there is no permanence. Again, with the wrong mindset or theology, this, too, can be threatening. If nothing is permanent, why try to do right by people? Why try to convince legislators to see issues your way if they will, eventually, no longer be in office and you'll have to start over again? Why make friends and work at those friendships? Why fall in love, why have children? I had trouble with this concept because deep inside I wanted to believe that what I did COULD make things, situations, relationships, whatever more permanent. Of course, to some extent that is true. We have deeper friendships and relationships when we work at them, when we make the time and space for them. We have more just political systems when we remain involved in them, even as they transition again and again.

But, most things are out of our control. And that has been, for me, one of the hardest lessons. I want to believe I won't die before age 50--so I make sure that (although I am overweight) I never get to the weight my mother was, that I have a more active lifestyle than she had, that I eat healthier and exercise more. I do my breast exams and go to the hospital every time I feel a lump. But ultimately, I could die at any time, of course. I can only control the situation so much.

When you lose a parent young, your body and soul fight between wanting to control everything and feeling completely hopeless about the future. I have learned, slowly, over the last almost 30 years, to find a place in between these two extremes and to stay there at least, well, 40% of the time. The other 60% I'm still trying to control or feeling hopeless. But at least now I can catch myself doing each of these, and I can find my way back. No, I will tell myself, don't walk away from this conversation--it matters, what you say and how well you listen matters--even if your full presence may not change anything, your full presence is a witness to the ways we can love and live in hope. No, I will tell myself, don't just give up on trying to get the next chapter of the novel written--even if no one else ever reads it, writing is the way you connect to your soul, and these characters, even if no one else ever meets them, are teaching you something important. Stick with them.

That is groundlessness--acting out of love and hope even when we know our efforts may not matter at all in the long run. We can have hope that they will, but even if they matter only in the short run, haven't we given witness to the acts of love and hope that are transformative? If we can't do whatever needs to be done to create a permanent change, haven't our voices and actions mattered, at least in terms of how we have inspired others or even ourselves to do the next right thing?

Lately I've been open, again, to the deep conversations that have always sustained me. My father's death, my student's death, my mentors' deaths--they blocked me in some deep ways that I didn't really recognize until this summer, when people started showing up and longing for the same kinds of deep conversations I so desperately need to sustain myself. And so I have been having them. And even when they are heart-wrenching and take me to deep places where there are wells of pain I have not yet touched, I can come back to the surface and keep swimming--I don't stay there.

I am learning to be fully present, not just with these friends but also with my child, again. I can tell the difference--aggression is gone, and all our conversations are more real now, and I can more easily feel everything, without holding too tightly to any feeling. I am finding a way to work steadily on everything from my office's annual report to the ongoing search for resources without panicking about what will come next. Somehow when I'm able to be in this groundless place, I also make better decisions--about money, about how I spend my time, about how I set boundaries around what is and is not possible at work or home.

I'm in a good place even though there is so much transition, so much I can't control.

Memories of my Godfather

Sometimes, when things were very serious—like during my mother’s long illness—my Nono would find a way to make everybody laugh. I distinctly remember a time when we were all gathered in the family room in the house where I grew up. We were talking about ordinary things (I think I was answering a question my Nona had asked me about how school was going), but the mood was dreary. Although I can’t say for sure when this happened, but I know my mother was still alive but not in the room, so she was likely in the hospital, which means I was between 9 and 13 years of age. In any case, quite suddenly and totally out of the blue, my Nono did a summersault off the couch. It seems impossible that this is a real memory, but I swear it happened. My sister and I burst out laughing. Nona was shocked and said, “Taki, what are you doing?” but then she started laughing too. He had a way of lightening things when they were too heavy.

He had the best sense of humor of anyone I ever knew. He was almost completely blind, though I didn’t know it until after an encounter I had with him in the Summit Mall when I was probably around 11 or 12. I was wandering the mall with my friends, and I saw Nono with a couple of his Greek buddies walking toward me. I ran up to him and said, “It’s so good to see you!” I took his hand and gave him a kiss on both cheeks.

“It might be good to see you, too, but I won't know for sure until you tell me who you are,” he said to me. His buddies cracked up, but I didn’t really get the joke until later.

“Very funny, Nono. It’s me, Argie,” I said, and then he smiled and gave me a hug.

Later I asked my cousin Connie about it, and she said, “Didn’t you know your Nono is mostly blind? He can see your outline, but that’s about all.”

It blew my mind. How could he be blind? He literally never showed any sign of blindness that I could see. Of course, looking back, I realize that he was always with others (usually Nona) if he was in unfamiliar places, and that by the time I was about seven or eight he was no longer driving. Maybe I wasn’t very observant, but I think the reason it surprised me so much was he seemed so invincible. Even when I heard about his death—although I knew he’d struggled with cancer and other illnesses and was 82—I didn’t believe it.

He wasn’t a large man, but he had a large presence. His features and glasses were big, as was his voice—but it wasn’t only the obvious aspects of his physical self. There was something about his presence that always made me pay attention.

He loved to be funny, but that that does not mean that he didn’t take seriously the important things in life. I remember Nono and Nona coming to our house after my mother died. They were so sad they could not talk. The love they had for her, and for my father, was deep. I would be reminded of this again and again by my Nono. In almost every conversation I had with him as an adult, he would say, “Your mother was one of the best.”

Nono was a wise businessman. I knew this because every Greek in Akron knew it, but also because I got to see him at work. He offered me a summer job at his insurance agency when I was in high school, and I worked that job for at least three summers. I have three memories of my time there that I think demonstrate what kind of businessman he was. First, I remember a parade of Greeks, and the occasional non-Greek, wandering in and saying they wanted to talk to Taki or Pete, depending on what they called him. They would go into his office behind closed doors and talk for what seemed like a very long time. I wondered once, out loud, why they didn’t just deal with those of us in the front office, and Judy, his secretary, said, “They’re not here to buy insurance or report an accident. They came to get some advice.” To this day I have no idea what that advice entailed—only that he was the kind of person who people from all walks of life could count on.

I also remember one time when I had printed the list of people who were late on paying their premiums. It was my job to call them to remind them to pay their bill. I gave the list to his secretary to check it, and she crossed out a couple names, saying, “Pete told me they have already paid.” A week or so later, one of those crossed out names called in. She was an American lady and sounded very sick.

“I’m calling because I can’t pay my bill,” she said to me. She told me her name, and I checked the list.

“It looks like you already paid it,” I said to her.

“But that’s impossible,” she said. “I don’t have any money because the medical bills are piling up. I haven’t been able to pay any of my bills.”

I assured her that her bill was paid and got off the phone as quickly as possible. Later that night, I asked my father, “Do you think Nono knew and paid it for her?” I asked.

“Your Nono does not pay other people’s bills for them,” my father said. “If he did, he wouldn’t be so rich. It must have been a mistake.” I realized suddenly that my father was jealous of him, and also of how I was interested in, and wrestling with the story. That was the last time I ever talked to him about anything that happened at the insurance agency. But I knew what had happened, and I realized even then that I wanted to be generous like my Nono was when I was older.

My third memory involves how he treated his staff—his secretary Judy, who was a very kind single mother, and her daughter, who also worked part-time in the office. If it was a busy week, he would buy everyone pizza on Friday. Also, once Judy told him about a little cabin by the lake that she wanted to buy, but she wasn’t sure it was a good financial decision. He said to her, “Judy, you deserve a little enjoyment in your life, you know what I mean? You should buy it.” He walked away abruptly as he so often did, and I glanced at Judy. She was wiping a tear out of her eye. I don’t think anyone had ever told her anything like that. I was too shy to ask her later what decision she’d made, but I hope she bought the cabin.

As for me, I was a terrible worker. First of all, I was a shy, awkward teenager who was definitely not cut out customer service, and I was terrible with anything math-related. I could handle the filing and other routine tasks, but even while doing those tasks, I distinctly remember daydreaming about whatever book I was reading at the time or whatever story or poem I was writing. I’m sure I drove Judy crazy. I realize now, of course, that I wasn’t much help, and that the whole idea of the job, besides giving me something useful to do and a little spending money, was to give him a chance to spend time with me.

Sometimes he would ask me to come into his office to do something that could clearly have been done at my desk. I remember stuffing envelopes at a table in his office while he talked to me about my father. “He’s a little bit crazy and mean sometimes, but he is a good person inside,” he said to me. At that time, when things were at their worst with my father, I didn’t really believe that was true—but those words stuck with me as I grew older and definitely played a role in my decision to reconcile with him and actively work at building a relationship with him in my late 20s.
Another time when I was in his office he told me the story of meeting and marrying Nona. I actually stopped what I was doing to watch him talk, because he got a faraway look in his eyes, and a huge smile.

“You’re still in love with her,” I said. I was a little bit surprised. I was a teenager, and I didn’t think any older people stayed in love after they had children. I was immediately embarrassed that I had said it out loud—it seemed somehow too personal or strange.

But he didn’t hesitate to respond. “Of course,” he said. “She is the best woman to put up with someone like me. I am so lucky.”

“You’re not so bad,” I joked.

“But she’s much better than me,” he said, without even a hint of laughter in his voice.

In addition to the talks we had in his office, he frequently took me out to lunch, either to Yocono’s or Wally Waffle. I loved these lunches. He was the only adult at the time who took my ideas seriously. Maybe that wasn’t exactly true—maybe he simply had more time than the other adults in my life to really engage with me—but either way, when I was in his presence, I felt heard and understood in a way I didn’t with many adults at the time.

My father was prone to making terrible business and financial decisions, none of which I knew about unless Nono told me. Unlike the other Greeks in Akron, he was too proud to actually ask my Nono for advice. Occasionally Nono would tell me about some decision my father had made—he’d heard about it from somebody else in the community—and he would say, “I would have warned your father against that if he had talked to me, but he would have done it anyway.” My family never talked about money, but I knew two things that I learned from my Nono: that my father made enough to make ends meet but just kept making bad decisions, and that he could have had the knowledge to make better decisions if he’d actually asked for help. At a time after graduate school when I was struggling financially, and more recently when my daughter’s needs have stretched my budget beyond its capacity, I have remembered the importance of asking for help when I need it—not for a handout, but for advice from people who know more than I do about money management.

Over the years, my father would get mad at my Nono many times, or avoid him altogether. My Nono always took this in stride. He told me during one of these fights, “Your father has a strong personality, but that’s OK.” It was the understatement of the year, and it made me laugh.

When my father had a nervous breakdown, Nono actually posed as a depressed person and went to a local doctor to get anti-depressants for my father. I found this story completely hilarious, mostly because Nono must have really had to put on an act. I never saw him depressed (except when I visited him during his long and ultimately successful battle with cancer). He wasn’t one to wallow in his sadness. Although this little trick could have backfired in multiple ways, it worked. My father actually tried them, and they actually helped a little. He was able to continue to get them once he realized they worked, and they really helped him to cope with the hardships he faced later in his life. Even when my father was pushing them away, Nono and Nona showed up when most people couldn’t deal with my father’s drama. They were definitely his most loyal friends.

Another gift that Nono gave me was that he took my academic interests seriously. Most Greeks, including my parents and extended family, are very committed to education, but Nono actually paid attention to what interested me. I was very interested in World War II when I was a kid. I interviewed him once, and maybe twice (I’m not sure) about his experiences as a young person during the war years. It was one of the few times besides when my mother died that I saw him very sad. He told me about seeing people die and bodies being piled up in the streets of Athens. I wish now that I had better recorded the interview, at least on paper, or that I could find the essay I wrote in 7th grade about the interview. I’m not even sure I ever showed it to him, but I do remember my 7th grade history teacher, Mrs. Moran, putting a big “A” on the top of the paper. I was a good student, so the “A” wasn’t that big of a deal, but below it she wrote, “You are lucky to have someone who can tell these stories to you in person.” I will never forget that, because it seemed like such an unusual thing for a teacher to write on a student’s paper.

Later, he and my Nona bought me Nicolas Gage’s book Eleni for my 14th birthday. They took our family out to eat that year—the first birthday I had after my mother’s death—which was critical, because there was not much celebrating happening in our house at that time. My father was mad about the book because his family had been on the opposite side of the Civil War in Greece than Gage’s—but even then, I knew that war made people do terrible things to each other, and that equally bad things had happened at the hands of both the right and left wing. This book and the interview I had with him led to a life-long interest in World War II and the Greek Civil War. I have written many creative works based on these historic events, and I have taken students to Greece to study them.

There are two conversations that I had with Nono that have had by far the biggest impact on me. I have returned to them again and again over the years. Once, he told me that he hoped I would be more successful than he was someday.

“I don’t think I will,” I told him. My father always hoped that with my “brains,” I would become a doctor or a lawyer and be able to afford everything he couldn’t, but even in high school and early college, I knew I was not going to become either. I was terrible at science and also terribly shy.

“I don’t mean like have a lot of money and more than one house, not that kind of success,” Nono said. “I mean I hope that you will do something where people want to come to you, instead of something where you have to go out and try to get the people.” It was such a different message than the typical message immigrants give their children and godchildren. It was not about wealth or even about belonging, but rather about choosing to do something meaningful, where your work was essential, needed.

“But people do seek you out all the time for advice,” I said to him. He didn’t respond to that—he just got up abruptly to pay the bill and walk back to the office.

I hope that I have fulfilled his hope for me. I am a mother, teacher, and writer, and I am now the coordinator of service-learning and community service at the college where I teach. Although I make a lot of mistakes in all of these roles and can’t claim that I am always successful in the way he meant, I know that the choices I have made in my life were influenced by him. I have, at least, chosen several times throughout my life to do what will be more meaningful and useful.

Another time, on a dreary, rainy day when we were eating at Wally Waffle, he asked me if I believed in God. It was a strange question, especially coming from the person who baptized me, and I don’t remember the context—though I’m pretty sure there wasn’t really a context. I think the question came into his head in much the same way that the idea to summersault off the couch came into his head.

I said honestly that I wasn’t sure. I was about to start college and was not sure anymore where I belonged or what I believed. He said to me, “I think people who don’t believe in God are idiots. How could you not believe when there is so much beauty in the world?”

My first thought was that there was absolutely nothing beautiful in my immediate surroundings. I remember looking around the rundown restaurant and out the window-lined wall at a parking lot, where a woman was struggling to open her umbrella. But instead of commenting on the irony of what he had said about beauty, I blurted out, “But Nono, you can’t even see!” Right after I said this, I was sorry.

For once, he didn’t answer right away. There was a long pause, and he took a bite of his food. Then he said, “I still know when things are beautiful,” and that was that.

I have been thinking about these conversations all of my life, and I have shared them with many people. Together, they account for what was probably the best spiritual advice I’ve ever been given. The world is an incredibly beautiful place—even in the midst of the worst suffering, if we bother to look, we can see that beauty. And if we can’t see it physically, we can certainly feel it and know it. Spiritual beauty is beyond what we can experience through the five senses alone. This understanding has made it possible for me to get through the very worst moments in my life, and also to fully enjoy the very best.

My Nono's influence on my life has also helped me to remain committed to living a life of generosity and meaning, even if I sometimes fall short of doing so. I didn’t get a chance to tell him how grateful I was, which was completely my fault—in the last 15 years since I left Ohio, I could have made more of an effort to stay connected, but life got in the way. So, I’ll say it now in a way I know he'll understand:

Nono, you were one of the best.

Diagnoses, Assessments, and Turning 18...oh my!

So, let me get this straight:

S cannot stay by herself without getting on the internet and spending $100 she does not have or taking money out of my wallet and going to the store and getting, then eating, an entire box of Oreos. She can't get her homework done without someone sitting next to her. She has no idea how to function in most social situations. She would spend hours twirling around on pointe if she could.

She's making progress in all of these areas--lots of progress, actually--but, bottom line, she's not going to be able to be on her own when she turns 18 in a month.

Still, she needs a diagnosis other than her current diagnoses--math disability, PTSD and ADHD--to get any resources post-age-18.

All right, not a problem. The school is going to do an evaluation, required every two years for any student receiving special education services. Only the "evaluation" includes two tests and an "interview" (questionnaire) that I fill out. Also, her special ed teacher observes her in three classes and writes down what she does. From that information, the school decides she doesn't have any learning disabilities, but that she will continue to qualify as an "EBD" student (emotionally and behaviorally disturbed), whereas before, she qualified as both EBD and SLD (specific learning disability). So, they have to help her with emotional stuff but not with, you know, actually learning anything. Also: "we can't diagnose her with anything specific, except to say that she doesn't have a learning disability and is emotionally disturbed. Sorry, that's not our job."

No problem. Her psychiatrist, who mostly just writes her meds scripts after quick check-ins with us once a month, convinces my insurance to pay for a thorough evaluation. After two days of testing and a month's wait, in addition to ADHD and PTSD, S is diagnosed with a non-verbal learning disability. This diagnosis fits her skills incredibly well. It is diagnosed based on a huge discrepancy between her verbal IQ score and other aspects of her score. The diagnosis requires very specific accommodations if she is to learn well. It also affects her social skills.

The doctor also diagnoses a rule-out for OCD, ODD, and Aspergers. That means she may or may not have these, he's not sure.

After getting his report, I realize I have evidence that she needs help with learning, not just with emotional issues. But the school cannot use this report--they can only use their own evaluation, unless I write a request stating that I disagree with their findings and want them to pay for an outside evaluation. I already _have_ an outside evalution--but that doesn't matter.

Next, I connect with Human Services. Her IQ is too high for her to qualify for services, and without a definite Aspberger's diagnosis, the others "don't hold much weight." But, they can send a psychologist to our house to do a "functional assessment," and maybe he can make a "more specific diagnosis using the language we need for our files."

"Wait!" I say excitedly. "She's having a functional assessment done next week!" Vocational Rehabilitation Services has convinced me to allow my child to stay for four nights at another family's house and to take a bunch of tests at the workforce center an hour away to determine what her living and work skills are like."

"That sounds like a good idea," the social worker says, "but we need to have our own assessment. Vocational Rehab can't diagnose her. That's not their job."

OK, fine. A psychologist Human Services contracts with comes to our home, talks with S for 30 minutes, then with me for 30 minutes, and, at the end, asks me, "Has anyone ever talked about an Aspberger's diagnosis?"

"No," I reply, confused. "I thought that's what you were doing here--trying to determine if she had Aspberger's."

"No, I just want to know about her daily living skills," he says. "I can't make an actual diagnosis."

"But the social worker said we need a diagnosis to get services?"

"Really? Well, I can't do that. But I'll write up a nice report saying that even though her IQ is too high to qualify she still has some issues with living and work skills. Maybe that will help."

He leaves, and S announces that he is the dumbest person she's ever met. I can't really disagree.

In the meantime, I contact the state S is from to request that my adoption assistance be continued another year. The woman on the line says it's possible, but not a done deal, and that she can't do anything until S is a month away from 18 in terms of responding to my request. So, I can't plan my summer finances, because I have no idea how much money we'll have coming in after she turns 18 next month. "But you should try Social Security," she suggests, "so you have a safety net in case we don't come through for you. She may qualify for SSDI."

So, I make an appointment with Social Security. But, they can't get us in until the end of this month--which turns out to be a blessing once I see the sheer weight of the paperwork I need to fill out to determine if S qualifies for disability income. "We'll need proof of a diagnosis," the unhelpful woman on the phone tells me.

"OK," I say. "So, what kind of a diagnosis does she need to qualify? She has PTSD and..."

The woman interrupts me. "Well, it's not only the diagnosis. We need proof that she can't work full-time."

"Well, she's going to have a vocational rehab assessment next week--will that work, if they determine she can't?"

"No, that's a different kind of assessment."

"So, how do we demonstrate that she can't work?"

"Well, if she's worked before and had to stop working..."

"She's 17. She has special needs. She's never had a job."

The woman seems perplexed. "Oh," she says. Long pause. "Well, we'll just need to see the diagnosis, and then talk to you and her. And if we need more information, we'll have to ask for another assessment."

So, let me get this straight:

--In order to get an IEP continued, the school has to do its own assessment. And, if you don't like the results (which I didn't), there's a long, paperwork-heavy grievance policy. All I want is for them to look at these other assessments, but not, that's not part of the grievance policy--instead, I have to request that they hire another person to redo the assessment.

--In order to get vocational rehabilitation services, VR must do its own assessment.

--In order to get services through Human Services, Human Services must have a diagnosis.

--In order to get a diagnosis, Human Services must have diagnosis language that "exactly matches what we need to see,"--but they can't tell me what that language is.

--In order to get Social Securty benefits, we need "a diagnosis," but I can't know what that is, and "the diagnosis may not be enough." But when I offer proof from other agencies that S has trouble making good decisions if she's left alone, well...that's not good enough.

--I need to get a guardianship for S, but in order to do so, I need to have evidence that she can't live on her own and needs help making decisions. Um...who, exactly, can verify this? The attorney isn't sure, but "hopefully one of these assessments she's getting will work."

--Why did I put my daughter through a two-day neuropsych exam again, if no one can use the results?

Dear Parents of Children with Disabilities,

Start the transition process early, even if the school swears that they are not required to start until the senior year. They are wrong. The school is supposed to begin transition services in 9th grade, but they won't help unless you really push them. And even if you do push them, they are unlikely to follow the IEP goals you put together, even if you create an entire curriculum that all they have to do is follow. So, in short, don't expect the school to prepare your child for the future, or to connect you to any resources you need.

Vocational rehabilitation may be helpful, but only if you actually call them and let them know you're paying attention to the fact that they've only met with your daughter twice in four years. When they do realize you're on the case, they will be very nice and start offering to assess her, and this may work out (I can't say for sure--I'll get back to you on that next week). But, in order to prepare for the assessment, plan to spend several hours filling out paperwork with questions that are already in multiple files at multiple agencies around the state.

Do not expect to get any assistance filling out any of the 120 pages of forms that you will need to fill out to get connected to multiple support offices, none of which talk to each other or accept each others' assessments. Expect to traumatize your child by forcing her to talk to multiple strangers and answer the same questions and take the same tests over and over--even if she already has a therapist and a family therapist and other resources, now. Strangers, you see, are much better able to determine her needs than anyone who works directly with her on a weekly or daily basis.

Expect your child to see through this and recognize that it is, as my daughter S put it, "complete and utter b.s."

Finally, be sure to have a plan B, in case, as soon as your kid turns 18, you find yourself utterly broke, without any kind of financial or medical support whatsoever. (Be sure you have a job with good health insurance that will keep your child on your policy past 18--but don't expect to keep your medical assistance, even if your copays alone for the meds she needs cost $200 or more a month).

And, don't be too idealistic. Despite the fact that we for some reason believe 18 to be a magic number, and even though you have busted your ass to get her everything she could possibly need to work through the challenging aspects of her disabilities--your child will not necessarily behave like an 18 year old when she is 18. She will not necessarily be able to go right from 17 to a job or to college. And, while holding S back was a good decision for our family, don't think that having another year in high school will solve everything--18 is the magic number, no matter what year your child is in school.

Also, when you are as frustrated as I am at the moment, please also feel free to call me. I promise to be a good listener. I know now how much we all need at least that. I also promise to help you advocate for your child--but I can't help with that until a few more years have passed, after I've figured out how to advocate for my own.

In the meantime, I do have some helpful advice: take care of yourself. Get exercise, get sleep, eat well, do what you need to do to stay balanced spiritually and emotionally. I am finally doing these things, and am finding I can take all this beaurocratic bullshit day by day, hour by hour.

In the end, the most important thing, besides self-care, is being present for your child. So if you find yourself ignoring her to make a phone call to one of the many agencies that has accidentally disconnected you after a long automated phone call in which you entered your child's social security number four different times--or if you find yourself distracted from what she's saying because you are filling out yet another form asking the same stupid questions about her independent living skills-- well, take a step back and think about what really matters. Time with your child matters more in both the short and long-run, I promise, than whatever it is you're doing--even if what you're doing has a chance of affecting her life as an adult.

And, finally, just keep telling yourself this: no matter what happens, you are going to be OK, and so is she.

Love,
Argie