Summer School Surprise
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11168014_10153313294737451_100530315214051268_nSummer school. What can I say about summer school?

In a word: amazing.

I’m serious. After three agonizing months of what can only be described as a horrible in-home “school” experience, summer school has blown my mind. Quite possibly, it has blown my daughter Katie’s mind too. Blown it wide open.

As I’ve mentioned in previous posts, Caroline, the original aide hired by my school district, struggled to keep Katie’s ever escalating behavior under control. It’s entirely possible that Katie’s anxiety and anger over her disastrous school experience was transferred to Caroline as the “school surrogate.” Regardless, Caroline alone was unable to address the problem effectively. My strong-willed daughter and the aide hired to teach her became locked in a power struggle of epic proportions, which only grew more charged as the weeks passed. The addition of Dina, a second aide, helped diffuse the situation. But the new-found peace was grudging at best.

I’d hoped to continue this tenuous arrangement for the four weeks of summer school. But secretly I worried. Dina had played “good cop” to Caroline’s “bad cop.” With the loss of Caroline would the hard-won peace hold?

Fortunately the school district decided to hire a second aide from Dina’s agency. Glynnyale had one day with Katie before we began our crash course in rapid prompting method (RPM). Both aides came with us for the morning sessions, and both were as impressed as me. Afterward, Glynnyale said, “Katie, now that we know how smart you are, we’re gonna rock this school thing.”

And by God, those gals have.

child-865116_1920For four weeks they have spent three hours per day pushing Katie in reading, writing, and math. Katie is now reading and writing short “a” and short “i” words as well as adding and subtracting numbers up to twenty. For a child who has been stuck on pre-kindergarten-level work for a long,  frustrating seven years, the learning curve has been exponential.

Without the behavior to distract us, we’ve learned Katie can tolerate up to two hours of academic work with mini sensory breaks before she needs a longer, more intense sensory break of 20 to 30 minutes. Wherever Katie ends up in the fall, this will be tremendously valuable knowledge.

In the afternoons, we practice RPM and three days per week Katie has an hour of makeup speech. Suzzette spends part of each session working on the “zones of regulation,” helping Katie identify which emotions fall into the green, yellow, or red (aka meltdown) zones. Although Katie’s mouth continues to be unreliable, I know she understands the concepts. Applying this knowledge to her body remains a work in progress. But at last I’ve succeeded in teaching Katie an essential skill that three school districts have resisted, if not outright fought against.

Things are going so well I have to ask: why would we want to give this up? Particularly to put Katie in a less than impressive non-public school that won’t really meet her needs? The answer is the one word my school district wishes I would forget: NO.

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Things are going to get interesting in August.

Until next time,
Cynthia

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Essay Selected For Modern Dating Anthology
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antique vintage typewriterMy essay, “Pick Ups at the Dog Park,” was selected last summer for publication in an anthology entitled, Rendezvous in the Rough: Essays from the 21st Century Dating Trenches. Six weeks later, my poetry manuscript was accepted for publication, and to be honest, with everything that was happening with the book, I forgot about the dating anthology.

A year passed. Eventually I remembered the anthology, but by then I figured it was dead. Which was disappointing, but what could I do?

Last week I received an email and guess what? The anthology has a publisher!

Dealing with topics such as online dating, sexting, and dating after divorce, the collection explores what has and hasn’t changed in how we date and find love in the 21st Century. Edited by Danita Berg and MacKenzie Jennings, the anthology will contain witty, wry, raw, insightful, and humorous essays on the modern, technology-enhanced dating experience. Which is funny because absolutely no technology, modern or otherwise, is involved in my story. Nevertheless, it’s a funny little tale.

As always, it’s an honor to have my work published, and I absolutely love the title. Don’t you?

After a year-long delay, the dating anthology is once again moving forward. Woohoo! I’ll keep you posted as I learn more.

Until next time,
Cynthia

 

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Just When I Thought It Couldn’t Get Worse, Part 6
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road-163518_1280You thought I forgot about this story, didn’t you?

Life (and death) intervened, but I’m back to finish this crazy tale. You can find the previous installments here: Part 1, Part 2, Part 3, Part 4, and Part 5.

The day after the visit from Child Protective Services (CPS), my daughter Katie had yet another meltdown. I was upstairs, attempting to work so I’m not sure what triggered the behavior, but it escalated. Nate and I had spent a day combing the back half of my house for any remaining breakable items, so for the first time in a long time, I wasn’t particularly worried about anything getting broken.

The Special Education Director had not returned my previous call, so I picked up the phone to leave her another message. I was speaking with her assistant when I was distracted by the unmistakeable sound of breaking glass. “Sorry,” I said. “Something just got broken.”

“Oh no,” she said. “What was it?”

“Not sure. Something glass.”

“Just now? During school?”

“Yep.”

“I’ll have the Director call as soon as she gets out of her meeting.”

I thanked her and hung up. I was at the top of the stairs when Caroline yelled that I needed to come down and clean up some glass.

broken-glass-920231_1920I had already decided that to protect myself from further interaction with CPS, I would stay out of the kitchen/family room area during “school.” “Is there some reason you can’t clean it up?”

“I’m not supposed to do that.”

“Well, stuff isn’t supposed to get broken either.”

“I can’t restrain Katie.”

“I’m not asking you to. By the way, where is she?”

“She’s sitting in the chill out zone.”

At least we wouldn’t have bloody feet this time. “I’m questioning why you can’t push a broom.”

“I’m here to teach, not clean.”

“Fair enough, but I don’t feel safe coming downstairs. I need to protect myself from CPS.”

Caroline glared at me. “That’s not what’s going on here.”

“Well, perhaps you could explain what is going on.”

“I need to talk to someone at school,” she said and walked out the front door.

Caroline was gone for 45 minutes while I discussed the issue with a girlfriend and Katie swung in her hammock swing. Finally Caroline returned and picked up the dustpan. I let her clean for ten minutes while I finished my call. Then I joined her.

girl-1531575_1920There were glass shards on every kitchen surface: floor, counter tops, window sills, and butcher block island. Plus two bottles of wine (one red and one white) had run down the cabinets and into the drawers. Apparently everyone, myself included, had forgotten about the small wine rack in the corner.

It took Caroline and I the rest of the school day to clean up the mess, and weeks later, I was still finding glass. The granite countertops were chipped too. To say I was pissed would be an understatement. But at least this time I had help.

The next day, when I finally spoke to the Special Education director, she sad, “Do you want me to fire Caroline?”

The Director had lined up an aide from an outside agency, and while she wasn’t sure if there were two available aides, there was definitely one.

I told her we should try the first aide and if that didn’t solve the problem, we could always substitute the second aide for Caroline.

Dina started on Monday. By the end of her first week, Katie’s behavior had dwindled to minimal levels. Katie still wanted Caroline to leave, but now it was just talk. We abandoned the idea of moving school outside and focused on keeping Katie’s sensory system on track.

Child Protective Services took no action except to refer me to an outside agency that offered to help obtain services for Katie. I agreed because who would turn down free help for six months?

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The big take away from this whole experience? Many people, including the CPS investigator, are more worried about me getting hurt than Katie. This was a painful and sobering realization. I have never considered myself in danger, but those close to me worry about what could happen, particularly as Katie gets older.

Although I did nothing wrong, I feel like we avoided a potential disaster, and for that, I’m grateful. As we move past this incident, I’m even more determined to find answers for the mystery that is Katie.

Until next time,
Cynthia

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Galleys for Across An Aqueous Moon Are Here!
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The galleys for Across An Aqueous Moon: Travels in Autism have arrived!!

For those of you that don’t know, galleys are the publisher’s layout of a forthcoming book. It’s kind of like the publishing version of a first draft.

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This week I will review the galleys for typos, errors, and any missing stuff. The Finishing Line Press editors will make the necessary changes, and then we will do another (final) round of review. Hopefully by the second time, there will be no mistakes!

I’ve glanced at the galleys and already caught a typo (it helps to be a former editor!), but overall, everything looks pretty good. I plan to go over the galleys carefully and send the marked up hard copy back next week.

This is a really exciting milestone for me. The book is getting close!

Until next time,
Cynthia

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Our Introduction to Rapid Prompting Method
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5f18feb5ac87c43171bf2b63bce201c3Remember when I said I needed to free my autistic daughter’s brain? (If you don’t, you can read that here. Don’t worry, we’ll wait.) Well, I think I’ve found the answer. Her name is Lenae Crandall and the technique is Rapid Prompting Method (RPM).

The two days we spent working with Lenae, RPM teacher extraordinaire of HEED, were simply incredible. In the first 30-minute session, she taught Katie about the senses of taste and smell. Within minutes she had Katie answering questions about taste buds, the four tastes, and how your nose works. Sometimes Katie would echo the last thing said and SAY the wrong answer while her hand was simultaneously PICKING UP the correct answer. Lenae told me this happened all the time. “Her mouth is unreliable. It can’t always communicate what her brain knows.”

Often Katie gave the appearance of not paying attention but could nevertheless answer the question correctly. I learned individuals on the spectrum can often only access one learning channel at a time. So if they are listening intently, their vision shuts down or goes “global.” They stare off into space as if daydreaming. It doesn’t mean they aren’t paying attention. Rather they are giving their full attention to the learning channel that is needed at the moment and ignoring the others.

The size of Katie’s vocabulary stunned me as did her understanding of concepts I’d thought too advanced. By the end of the first session I was tearing up. Katie’s two summer school aids were blown away. “You have to tell us what happens this afternoon,” they said. “We can’t wait until tomorrow. This is too exciting!”

We returned for a lesson on the French Revolution. Lenae began using the letterboard, and Katie spelled out king, sun, and Louis. She converted Roman numerals, added in her head, and correctly answered that planets revolved around the sun. She defined revolution as change. Then spelled it. When Lenae asked about war, Katie rejected the answer blood and said, “Anger.” Lenae considered this incorrect, but I didn’t.

At one point Lenae said, “You knew she was smart, right?”

I nodded, close to tears.

“But it’s different when you see it in action,” she said. “It’s the same for every parent.”

product_tn32_A_Z_StencilIn the third session, Lenae taught about scientific methodology, Greek and Muslim scholars, and the five pillars of Islam. She had Katie spelling bigger and harder words: science, guess, Islam, theory, and experiment. She even had Katie reading some of her choices, and guess what? Katie did fine. I didn’t know if I wanted to laugh or cry, but when it was time to go, Katie didn’t want to leave. After a year of anxiety, sensory overload, and hating school, my child was once again learning and it was a beautiful thing.

In the morning, Katie skipped into Lenae’s makeshift office in my friend Annette’s home. This time Lenae offered Katie a choice between science or poetry about cats. “Poet cats,” Katie said.

There was more spelling. Katie’s hand-eye coordination was improving. Toward the end Lenae switched to opinion questions, which are more challenging for individuals on the spectrum. Katie was giggling as she selected attributes for her new cat. When it came time to select a name, Lenae offered two choices plus a third: Neither. For three rounds Katie chose neither until Lenae suggested the name Ginger for the fictional orange cat. Katie smiled and said yes. She had had something approaching a conversation, but it was done in a non-traditional way.  It didn’t matter. We left in boisterous spirits.

For the second session of the day I was in the hot seat, attempting a lesson on George Washington and the thirteen colonies. I didn’t hold the letterboard at the correct angle, and I couldn’t juggle everything as quickly as Lenae. She made it look easy! Katie was annoyed and she showed it. But she did spell colony, thirteen, and revolution. Lenae fired suggestions at me and promised Katie a lesson without Mommy when she returned.

For her final session, Lenae taught Katie about trovants, the Romanian rocks that grow. She worked some geometry into the mix and Katie demonstrated understanding of sphere, horizontal, and vertical as well as the difference between 2-D and 3-D. For much the lesson, Lenae wrote Katie’s choices but did not say or spell them aloud. She merely showed them to Katie. Again and again Katie selected the correct answer. They also discussed core values. Katie though honesty was more important than love. Through the entire lesson, Katie’s face was split in a huge grin.

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I spent the evening crying on and off. I’d met Katie’s big, beautiful brain for the first time, and it was a profoundly moving experience.

With Lenae’s help, I’m going to set that brain free.

Until next time,
Cynthia

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Another Twist on Our Autism Journey
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directory-466935_1280Back in February, when I was scrambling to set up an in-home school program, I was invited to an open house at The Friend Tree Autism Center in San Ramon, CA where I ran into fellow autism mom Annette Musso and her son, Matteo. Matteo and my daughter were in preschool together. Matteo is bright like Katie but less verbal.

Annette shared that nine months earlier, she and Matteo had begun Rapid Prompting Method (RPM) training. “I’ve been thinking about you and Katie ever since.”

Maybe she could tell that I was dubious—wasn’t RPM strictly for nonverbal kids?—so she called Matteo over. “Do you remember Katie? This is her mom.”

Annette pulled out what I later learned was a letterboard. It looked like a wooden stencil of the alphabet. Matteo pointed, letter by letter, and spelled out “Hi. Of course I remember Katie.”

Annette said, “Do you think Katie would like RPM?”

Matteo spelled, “I think she would make an excellent candidate.”

I stared at Annette, stunned.

“I’m telling you,” she said. “It changed our lives.”

product_tn32_A_Z_StencilAfter that night, I kept thinking about Matteo and his letterboard. Was this the solution I’d been searching for? Katie was making progress with a multi-sensory reading approach but we were a long way from conversation. Could RPM speed things up?

In the chaotic months that followed, I kept meaning to call Annette. Finally in June, I did. A few days later she phoned, breathless. “Lenae, the RPM tutor, is coming to the Bay Area in early July and has a few empty slots. I really want Katie to try this.”

I admitted that I didn’t know anything about RPM. “Right now it seems like magic.”

“Not magic,” Annette said. “Just a way to give Katie her voice.”

This was exactly what I’d been fighting for. “But how does it work if the child can’t read?”

“Doesn’t matter. Katie reads.”

“But how….”

“You read to her, right? She picked it up the same way Matteo did.”

I wished it were that simple. Katie is dyslexic and struggles with reading. “I don’t think so.”

“She can, Cynthia. She just has no was to tell you.”

This had never occurred to me. What if the problem had been Katie’s struggle with speech all along? My voice wobbled. “But what if she can’t. Will it still work?”

“Yes, but trust me, Cynthia. She can read.”

I got off the phone, shaky with fear and excitement. Would this work for Katie?

I requested the application and ordered the book. I learned that the developer of RPM, Soma Mukhopadhyay, had created her teach-ask technique as a way to educate her nonverbal son, Tito, who went on to author two books. Eventually Soma came to the United States and founded the nonprofit, HALO, in Austin, TX.

product_tn22_coverbookAlthough originally developed for nonverbal students, Soma learned her approach could also help those who were verbal like Katie: able to meet their needs and possessing varying amounts of rote speech, but unable to carry on a conversation. It turns out RPM was not only a means to educate but also communicate.

The more I read, the more it seemed like a dream come true.

I scrambled to read Soma’s first book in a few days and answered the questions in the application. Then came the real test: the video-taped lesson.

I consulted with Annette who told me to keep it simple and let Katie pick a book. I was to read her a sentence or two then ask her an either-or question based on what we had just read. Katie selected a book called Penguin Post. I sketched out a quick lesson plan and gathered pen and paper. Katie sat at the kitchen table and Nate filmed us. Even though I fumbled and it was Katie’s first time, she got the questions correct except when her ecolalia interfered. Even better, there was no behavior!

I sent the video to Lenae and was thrilled when we were accepted. Then, as if to confirm my actions, I stumbled across an article online. A young man who was nonverbal with profound autism began RPM at age 14. He could not read. By 22, he had earned a high school degree, was contemplating college, and wrote the commencement speech for his graduating class. The principal said his achievements changed how he and his staff viewed disabilities.

Katie was only 12 and could read (a little). Perhaps a college diploma was still in her grasp.

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Today we start out RPM journey. Katie will have six 30-minute sessions with Lenae Crandall of HEED over the next two days. I can’t wait to see what unfolds.

Until next time,
Cynthia

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Saying Goodbye
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timthumb.phpKatie and I are on vacation this week, getting some much needed rest and relaxation on the Sonoma Coast. This place has never failed to provide both of us with much needed solace and sanctuary. I am grateful that we can return once again and heal our weary spirits.

Katie’s extended school year has finally concluded. We said goodbye to Caroline last week, and I think all parties were relieved. I like Caroline a lot, but asking one person to solve seven months of school failure was an impossible task—for her or anyone else.

No one, whether aide or student, should be set up to fail. And yet, that’s pretty much what happened in my home this spring. It’s disappointing and definitely not what I thought would happen. But I have learned that things rarely turn out as expected in Autismland.

You do your best, learn from your mistakes, and adjust course.

Young Student Moving Toward GraduationThere are still no openings in any of the non-public schools that I visited this spring. I have called and called (as has the school district), and although Katie is first on the waiting list for the school that I prefer, currently no available space exists. We are waiting until August 12th, and then I must make a tough decision.

I am doing my best not to obsess about the situation until then because the options are not good. Not good at all.

Summer school will start next week. It’s still in my home. The Special Ed Director said she couldn’t believe I was willing to continue and part of me agrees with her. But despite all the behavior and property destruction this spring, Katie managed to learn more than she has in several years. I feel like we have a little educational momentum, and I want to keep it going.

We have made adjustments, and my fingers are crossed. What else can I do?

Monica Martinez, my fellow autism mom and friend, died this week after a fierce battle with cancer. I am beyond heartbroken for her and her family. Please hold Monica, her husband Mark, and her sons Caleb and Joshua in your hearts. Josh is a friend and former classmate of my daughter Katie. He is such a sweet kid.

There are no words to express my profound sadness at this tragic loss. As I said before, it’s bad enough when any twelve-year-old loses his mother to cancer. But a barely verbal autistic child?

There are no words. For Josh. For me. For anyone.

No words.

Josh and Katie with their teacher and aides at Outdoor Education Camp, October 2014.

Josh and Katie with their teacher and aides at Outdoor Education Camp, October 2014.

 

After experiencing what I’ve experienced in my unplanned life, I am a firm believer that everything in life happens for a reason. Everything. But I can see no reason for this senseless loss. No reason at all. Except perhaps to remind the rest of us how incredibly precious life truly is.

Life is short, far too short. Please don’t squander it. Go out and live (and love) as if this might be your last week.

Until next time,
Cynthia

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Release of Across An Aqueous Moon Delayed
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Finishing Line Press expected to publish my debut poetry collection, Across An Aqueous Moon: Travels in Autism, this week on June 24th. Unfortunately, due to a new printer and other unforeseen events, the release date has been postponed by eight weeks. This means that my book will be hitting bookstores in early September.

I will post updates when I have an exact date and can schedule the release party!!

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Cover artwork by Nathan McKenna. Cover design by Elizabeth Maines.

The pre-sales period for the chapbook was a huge success. I sold more than 100 copies, which doubles my print run (and payment). Many thanks to everyone who purchased a copy. Your book(s) will be shipped as soon as the book is released. My apologies for the delay.

Thank you again for your support.

Until next time,
Cynthia

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Staring Into the Abyss
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canyon-203Apparently four people weren’t enough death and dying for one week. Shortly after I wrote my last post, I received an email from a mom of a child who attended school with my daughter Katie for the past three years. Monica, one of our fellow autism moms was diagnosed with bone cancer back in 2015. Except the bone cancer wasn’t the original source. The doctors searched and searched but never found a tumor. So Monica began chemo that would target the bone cancer and hopefully also the “cancer of unknown origin.”

It seemed to be working. Unless my memory has failed me, by the end of summer 2015, her bones appeared clear of cancer. Me and my fellow autism moms rejoiced.

But then Katie transferred back to our home school district, and as our placement woes escalated over the school year, I lost track of Monica’s battle.

A few days ago, it occurred to me I hadn’t seen an update on Monica in a long time. I wondered if this meant bad news….

When the email arrived, I knew what it would say. The cancer had returned and Monica’s last round of chemo had failed to stop it’s spread. Her lungs had filled with fluid, and despite a painful drain, continued to fill. Her last treatment option had side effects that proved intolerable. So Monica and her husband had agreed to stop treatment and pursue hospice.

If there is one thing a parent of a child with autism dreads beyond all else, it’s facing the thought: What happens to my child when I’m gone? With one brief email, all of us fellow autism moms were plunged into the abyss. Response after response came back—I’m speechless. I have no words. I can’t think. I’ve been so sad ever since I read this.

woman-1006102_1920I echoed all those sentiments. I’m a writer, yet still I had no words.

It’s bad enough when a twelve-year-old loses his mother to cancer. But a barely verbal autistic child?

There are no words. For him. For me. For the other autism moms.

No words.

I’ve told a few people that a friend, a fellow autism mom is in hospice. That she has a son on the spectrum who is Katie’s age. After a long pause they ask, “Does he have a dad?”

Yes, he has a dad, I respond. But he is still losing his mother.

It would be worse it it was you, they say. Katie would have no one.

Is this supposed to make me feel better?!!

So this week I’m staring into the abyss, worried about the future, dreading another email I know will come. Wondering why some people get cancer and some don’t, why some survive and some don’t. Why some get autism and some don’t. Wondering if there is some reason, some pattern, in the tapestry of life. Or just a big, haphazard jumble of threads, binding us together.

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Whatever the answer, the result is achingly beautiful. I plan to hang on as long as I can.

Until next time,
Cynthia

 

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Death Comes in Threes (Or More)
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Sad manIt’s going to be a long, sad week.

There’s far too much death and dying in my crazy corner of the world.

First, a writer I know, Joyce Maynard, announced that her husband, Jim Barringer, was dying. I was shocked. After a brutal, year-long battle with pancreatic cancer, Jim had been declared cancer free last November. I was thrilled for him and Joyce, their family and friends. Maybe it’s because Joyce is a writer and Jim is an attorney, or because after 25 years as singles they both found an amazing partner, but I identified with this couple, loved seeing their story unfold on Facebook and in Joyce’s letters and articles. The smiles on their faces made me indescribably happy.

But six weeks ago the cancer returned, and after a flurry of what I now realize were “lasts,” Jim died peacefully at home. He was 64. I’m heartbroken for them, their loved ones, even myself. They gave me hope that I too would one day be that joyously happy.

Now, it seems, that hope is lost.

On top of this, Michael 1.0, my ex-husband, emailed to inform me that a friend of his was in the last stages of cancer (more death!) and that his brother John, my former brother-in-law, had fallen and “cracked his skull.” (What, even more?) With Michael I never know if these kinds of statements are literal or figurative, but apparently some type of injury occurred because John had brain surgery, so he got a Queens personal injury lawyer to help with this. At first they weren’t sure if he would survive the procedure due to the poor condition of his heart, but he did. That’s the good news. The bad news is he’s having multiple seizures per day, still has cranial bleeding, and can’t be taken off the feeding tube. I think this is the end for John, who is only 62, and even though he is no longer my brother-in-law, that makes me me terribly sad.

But it gets worse. Michael told me the real reason for his email was that Alex, one of his closest friends, had recently died. (WTF–are you kidding me? Alex, who we visited every time we were in Pennsylvania for one blissful night away from the family drama and chaos—funny, charming, talented Alex—was dead?) Alex is Michael’s age, only 60, and I was so stunned I forgot to ask how. Michael must have been shaken too because he wanted me to revise his WILL.

Does this type of thing happen to other people? I’m guessing the answer is no.

In his first will, Michael had named a gun-toting drinking buddy as his executor, and now that he was sober, Michael regretted that choice—if you can even call it a choice. Now he wanted to leave his condo to me and Katie.

I struggled with how to respond to this statement. I mean, I’m glad my ex wants to leave his condo to Katie, but does that make up for a lifetime of no child support for the toddler he abandoned because she had autism? Does it even remotely cover half the cost of her therapy and living expenses, let alone funding a special needs trust? Hell no. But it’s better than nothing and I made peace with his departure long ago, so I kept my mouth shut and typed something vague and noncommittal. “Wow.”

When he pressed, I said I would revise his will. What else could I say? I’m in total agreement that the creepy friend with too many guns should not be executor. Sadly I suspect that leaves me.

Michael suggested I try Legal Zoom for $69.

“For what?”

“To revise my will.”

I refrained from pointing out that my law degree had cost a lot more. “Don’t worry. I’ll figure it out.”

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He said he was healthier than ever, retired, and playing golf every week. Didn’t think he would die anytime soon, but knew a revised will would give him peace of mind. I’m glad one of us is at peace. I’m confronting death and mortality on every side and it’s got me feeling anxious and blue. Then I think of Jim and Joyce, and I smile through the tears.

Until next time,
Cynthia

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