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AN UNPLANNED LIFE

Summer Vacation Redux
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It’s August, and while many kids are going back to school this week or next, my daughter just finished summer session. (Open Mind School operates year-round.) Katie has a three-week break before school starts up again.

I’m embracing this out-of-sync-ness. I’ll be using my time to relax, read, and do some writing. Katie will probably be doing as little as possible. We both plan to enjoy the last days of summer.

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In September I’ll be back, blogging about my unplanned life. Whatever you are doing, feel grateful for what you have, and enjoy the beautiful summer weather. I’ll see you soon!

Until next time,
Cynthia

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Run to Win
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ellogoSeveral weeks ago, I received an email with the subject line Run to Win, from a woman (or man?) with the unlikely name of Muthoni Wambu Kraal. Muthoni is the Vice-President of National Outreach and Training for Emily’s List, a nonprofit organization that recruits and trains pro-choice Democratic women to run for political office.

I’ve known about Emily’s List for years. I’ve given money to the organization. But this wasn’t the typical donor solicitation. Instead, the email invited me to attend a one-day workshop in Sacramento called Run to Win Candidate Training in mid-August.

I read the email twice, scratched my head, and forwarded it to Christopher, my boyfriend, asking: Do you think this is for real?

I honestly thought it was junk mail. Or a joke.

Christopher wrote back immediately: Of course it is! You signed up, right?

I was not expecting this response. So I forwarded the email to my friend Nate and asked the same question. Nate responded exactly as Christopher had.

Two girlfriends. Same response. Two more girlfriends. Same response. I hadn’t expected such unanimous enthusiasm for my previously unimagined political career.

Okay, sure, Doug Mann had tried to talk me into running for Mayor of Livermore 15 or 20 years earlier, but I thought he was the only one who wanted me in politics. Apparently there were others. Including Emily’s List. How was this possible?

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I contacted Emily’s List to find out a little more about the workshop. They were holding these seminars across the nation, recruiting the next wave of women to run for office. The workshop was more or less “Campaign 101.” I was told most women think, “I can’t do that,” but after seeing it broken down into steps, realize they can. “If you are even remotely interested,” the woman said, “you should attend.”

It turns out Emily’s List has—dare I say it?—a little file on me. Or at least some research. My law degree, consistent Democratic voting record, and advocacy on behalf of the Sierra Club and Save The Bay were duly noted.

IMG_0832I was honest and said I’d never really considered politics as a career path. But now, in the era of #MeToo, things felt different. “The workshop will help you make an informed decision. Consider it.”

I thought about it for a few days. Then yet another white male in Congress said something stupid and offensive (e.g. birth control pills were “abortion-inducing”) and I thought, nothing will truly change until Congress is 52 percent female. I dug out that email and applied to the workshop.

Who knows where this will lead? Perhaps nowhere, but I’m taking the plunge.

What unexpected risks have you taken lately?

Until next time,
Cynthia

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A New Summer Camp
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CampKrem-footerlogoMore than a year ago, Julie, my daughter’s Regional Center of the East Bay (RCEB) case manager, suggested that I enroll Katie in a special needs summer camp at Camp Krem near a Boulder Creek. Unlike Katie’s beloved Exceptional Needs Network (ENN) summer camp at Camp Arroyo, Camp Krem had longer programs than ran five or ten days. “You’ll need to work up to it,” Julie said, “but I think ten days without you to anticipate her needs will be an important milestone for Katie. Boost her independence and improve social skills in a setting she enjoys.”

I nodded. It seemed pretty tame, as far as goals go.

So in the spring, I contacted Camp Krem. I filled out voluminous paperwork and for:s, only to learn all the slots with a 1:1 aide were booked. Didn’t want to consider 2:1?

I asked Katie’s “team” of trusted advisors, and everyone agreed tha not having her own aide was risky in a new setting. My gut was telling me the same thing. I reluctantly declined the spot.

Camp Krem would have to wait.

summer-camp-buttonThis year I jumped on camp enrollment as soon as sign ups opened. I again filled out reams of paperwork and forms. I again requested a 1:1 aide. I didn’t get the session I preferred in August, but I got her in!

I’d been thinking about my strategy for nearly a year. The shortest session at Camp Krem was five days. The longest Katie had been to camp was 3.5 days. So I enrolled her in a five-day session at ViaWest, a special needs Camp in the Cupertino foothills that we use on weekends during the school year. So five days in June at ViaWest. Then 3.5 days at ENN summer camp in early July, followed by five days at Camp Krem in late July.

It was far more summer camp than Katie was used to, but I hoped a longer stay at a familiar Camp would prepare her for five successful days at Camp Krem.

Depending on how the five-day session went, we could resolve whatever issues arose and build toward our goal of ten days away from home.

firepitAutism has taught me to play a “long game.” Build slowly. Avoid negative experiences that take years to undo. Play it safe.

Katie did well at ViaWest for five days and loved every minute at Camp Arroyo. We packed her bags once more for Camp Krem. How would she do in a similar but different Camp setting.? Would she adapt or be rigid? How would she manage the unavoidable sensory overload?

The drive to Boulder Creek is long with many hairpin turns. My friend Nate came along to help with the driving and Sherpa duties. The camp is perched high on a hill outside Boulder Creek. Although one mom described it as “extremely rustic,” I found the camp quite pleasant. Katie seemed to as well. She followed a counselor down the path to her cabin, selected an upper bunk (as always), and told me quite clearly to leave.

Apparently the camp experience had been generalized. Mom not needed. I relaxed.

Nate and I departed and took a side trip to Pescadero for green chili soup and blackberry pie.

I spent the next three days relaxing: watching movies, reading books, and visiting with friends. (My boyfriend, Christopher, was in Saint Louis with his youngest, visiting his parents.) I did some writing too. On Sunday, I had brunch and then headed back to Boulder Creek. Katie was sun-browned and swimming in a huge Camp Krem t-shirt.

IMG_1509The counselor said there were no major issues.

“None?” I asked.

She shrugged.

I’m not sure how to interpret this response, but I’ll take it.

It looks like Katie’s going to Camp Krem for ten days next year.

Until next time,
Cynthia

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Won’t You Be My Neighbor?
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AR-303279986.jpg&MaxW=1200&Q=66My friend Nate and I recently went to see the movie, Won’t You Be My Neighbor? If you haven’t heard of the film, it’s a documentary on Fred Rogers (aka Mr. Rogers). Nate and I both grew up watching Mr. Rogers on television, and we wanted to take a nostalgic and sentimental trip down memory lane. The movie was that—and so much more.

I was surprised how emotional I felt when I heard the theme song—“… would you be my, could you be my, won’t you be my neighbor?”—and saw Rogers take off his suit jacket (forgot this!) to put on one of his many cardigans. There was a shoe change too, and puppets. How could I forget the puppets? Or the trolley? But I had. Until I saw them again and the memories came flooding back.

Yes, the show appeared quaint, even cheesy. Yes, Daniel, the tiger sock puppet, was dinghy. Yes, Mr. Rogers looked hopelessly square, even for the 60s. But the things he said in that slow, soft, comforting voice were radical. Radical then, in the aftermath of the Summer of Love, and to some extent, even more radical today. His message of love, acceptance, and inclusion seemed distant but attainable in 1968. Sadly, fifty years later, his message seems impossibly out of reach.

I found myself crying at various points in the movie and often I wasn’t sure exactly why. Except that I mourned the loss of this calm, gentle soul. I missed his unique blend of radical truth and universal love. It was rare then, but virtually extinct in 2018. Why is that?

I couldn’t help wondering: how would the world be different today if we had more Mr. Rogers?

And then: how did we lose our sense of compassion? Our sense of civility? Our ability to be—how should I put it—neighborly?

Or even just plain nice. By this I mean treating others with respect and decency, regardless of their viewpoint or lifestyle. When did this quality become outdated?

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Because I can tell you as a parent of an adopted, autistic child that if we can’t find a way to love our neuro-typical neighbors regardless of their religion, gender and sexual identity, or skin color, we will find it impossible to love, let alone respect, individuals such as my quirky, charming, and sometimes difficult daughter.

Katie struggles to conform to all but the most basic social norms. Not for lack of effort on her part. She observes people and details carefully, even minutely. But she often doesn’t understand why people do what they do—and that crucial detail makes all the difference. She might think that she does, but then she applies the rules incorrectly—and beats herself up afterward for the mistake. Or her sensory system becomes overstimulated and she loses control of her body or her mouth (or both). More self-loathing follows.

It breaks my heart.

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Mr. Rogers understood instinctively that everyone deserves respect. Everyone is worthy of love—exactly as they are. Not when their religion changes or their behavior improves, but NOW. Just as they are. Imperfectly perfect human beings.

I, for one, plan to live his message as best I can. Not only because I parent an autistic child, but because it seems a powerful antidote to the hate and chaos that swirls around us.

We are all worthy of love and respect. We all have value, even those who struggle to fit in. Thank you, Mr. Rogers, for the reminder.

Until next time,
Cynthia

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The Amazing Firebird
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In January 2017, my daughter’s incredible school partnered with the Circus Center, which is based in the former Polytechnic High School Gym in San Francisco (see photo above). From January to June, several members of the Circus Center staff traveled weekly to Redwood City to work with the Open Mind School (OMS) students on circus skills and physical literacy. The Circus Center also wanted to learn how to make their programs more inclusive. The results were truly incredible, but after the show in June 2017, and figured the project was done.

I was wrong.

37375554206_f93a2248fd_oThis January, the Circus Center resumed its partnership with OMS. And with the two-story gym at the new school location in Menlo Park, the Circus Center grew more ambitious. It added static trapeze and aerial silks to the mix. Just the thought of seeing my daughter—who holds the honorary Guinness Book of World Records award for swinging—on a trapeze made my heart soar. I couldn’t wait!

Katie, for her part, seemed more interested and engaged on “circus day.”

Kids on the spectrum can be quite good at keeping secrets when they want. For months I pumped Katie for clues. Was she going to be a monkey this year? A different animal? What was her favorite circus art? All I received in response was a sphinx-like smile.

Finally on June 30th, after multiple trips to San Francisco for practice and dress rehearsals, the wait was over. Christopher offered to drive Katie and I in his new car. I was thrilled to get a break from driving, and Katie was excited to spend extra time with Christopher. We took a leisurely route to the Circus Center’s historic building near Golden Gate Park and dropped Katie off for costuming, Christopher and I parked and had lunch, then headed back for the show.

Last year, the students had all worn hooded fleece animal costumes during a record heatwave. This year, OMS had opted for simpler, cooler costumes.

The theme for the show was The Wonderful World of Life, Transformed. Each child was an insect, bird, fish, or animal that emerged from either a cocoon or an egg. The skills they learned were as follows:

Juggling and Clowning

  • Rings and Scarves
  • Diablo
  • Juggling Balls
  • Pedalo
  • Rolla Bolla

Acrobatics

  • Hand Balancing
  • Tightrope Walking
  • Trapeze
  • Aerial Silks/Hammock
  • Mini Trampoline

Show Creation

  • Theme Selection
  • Script Writing
  • Character Selection
  • Face Paint
  • Music Selection

IMG_1486To my surprise, not only was Katie grouped with the four high school boys, but she was listed last on the program. Why? Because it turned out my child, dubbed the Amazing Firebird, was the spectacular grand finale.

Many children on the spectrum struggle with coordination, but not my child. And the Circus Center took full advantage of that fact. The general circuit that each student did was this: curl up in a large silk suspended from the ceiling, emerge, walk a tightrope (or practice bar), stand on the pedalo, balance on the rolla bolla, sit or stand on a static trapeze facing the audience, then bounce on a mini trampoline and jump off. Two adults spotted each child, and each showed marked improvement over the previous year’s performance. Katie, however, took everything to a whole new level.

IMG_1475She spun in the silk, then strode confidently across the tightrope. She rode the pedalo forward and then backward, making the parents cheer. She slide back and forth on the rolla bolla, clearly bored, then ran to the trapeze, which had been turned perpendicular to the audience. My little firebird started swinging, quickly gaining altitude, her colorful wings flapping behind her. Parents gasped, then cheered. It was a beautiful, dramatic sight. She finally stopped, jumped high on the trampoline, and did a rock solid dismount. The audience burst into applause. Katie stood for a minute, grinning, then vanished back stage.

As the students filed back on stage for a final bow, Christopher leaned over and said, “It’s too bad they didn’t let her really go to town on that swing.”

I laughed in agreement. Maybe next year. Even so, the Amazing Firebird was a true show stopper.

Until next time,
Cynthia

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What Happens at Camp Arroyo Stays at Camp Arroyo, Year 4
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sleeping-bag-59653_640Last week, my daughter Katie attended Camp Arroyo, which is where the Exceptional Needs Network (ENN) holds its summer camp for special needs children in conjunction with the Taylor Family Foundation. This was her fourth year.

The camp may be a short three days, but ENN really goes all out, providing two bounce houses, a swimming pool, service animals, petting zoo, popcorn and snow cone machines, ping pong, a host of special visitors, and a yurt devoted to art projects. They also had horseback riding, rock climbing, drones, and a zip line. Plus a dance on the final night.

I think the dance might be the best thing as far as Katie is concerned.

Katie had the amazing Ashley Angeles as her aide again. She and Katie really took to each other two years ago, and the two picked up right where they left off last summer.  As we carried Katie’s gear up the hill to her cabin, Ashley asked if anything had changed in the past year. “Not really. She’s still getting a period—obviously—but can handle that pretty independently now,” I said. “I don’t think it will happen at camp, but I said that last year, and I was totally wrong.”

Ashley nodded. “We’ll be fine, whatever happens.”

Katie was in a different cabin this year. She took this change in stride and picked a bunk in a new location. As usual, she climbed up and spread out her sleeping bag and blankets, added her pillow, and flopped down. “Bye, Mommy.”

“No hug?”

“Go bye bye, Mommy.”

Ashley and I laughed. “Enjoy your time off,” she said.

“I will.”

As I walked back to the car, I reflected on how camp stays the same and yet changes every year. This is Katie’s happy place. So much so that I don’t even mind spending a night freezing in the Livermore High School gym in order to sign her up.

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Both Katie and Ashley had a great time. Ashley reported that Katie rode a horse, petted all sorts of animals, did the zip line multiple times, and ate nonstop. She danced so much that she was given the Dancing Queen Award! And yeah, she got her period again too. Sigh.

Once again, my daughter thrived at summer camp.

As for me, I watched a ton of movies on Netflix, wrote, and slept in every morning. Christopher and I went out for dinner. I had hoped to spend more time with him, but unfortunately that didn’t happen. Even so, it was good to get a break from the demands of parenting.

As was the case last year, after three days away, Katie didn’t want to come home. This year instead of unpacking her duffle bag or crying, she mostly just repeated, “I don’t want to go.”

She hugged me when I arrived for pick up but didn’t seem homesick as she had last year. We hugged Ashley goodbye. “See you next year,” Ashley said.

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We stopped at a park to swing, then headed home. Katie slept for much of the afternoon. By the following day she had recovered and was asking to return to Camp Arroyo. A year is such a long time to wait….

Until next time,
Cynthia

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Katie’s at Camp Arroyo (Again)
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Camp Arroyo - LogoThis afternoon I drop Katie off at Camp Arroyo. This will be her fourth time at the Exceptional Needs Network’s summer camp for children with special needs. To say she is excited would be an understatement.

I’m pretty excited too. Unlike most single parents, I don’t have an ex-spouse/partner who provides me with free and convenient childcare on a regular basis. As a result, I get very little time off from parenting my autistic child, and when I do, it almost never involves more than a few hours here and a few hours there. Plus it’s not cheap. To have a three-night break is an extraordinary and priceless gift. Even if I had to spend half of one freezing night in the Livermore High School gym waiting in line. (Christopher, being the amazing boyfriend that he is, did the other half.)

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Thank you Exceptional Needs Network and The Taylor Family Foundation. You have made one single mom very, very happy.

I’m off to play….

Until next time,
Cynthia

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A String of Firsts
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23517406_10156013782458699_9137483650859847552_nLast weekend, I coordinated Poetry Day at the Alameda County Fair. (I know, who knew?) in the morning, I hosted an open mic for all the poets whose work was accepted and displayed at the Fair, plus in the afternoon, taught a free poetry workshop called “Playing with Time and Memory.” But before all the fun at the Fair, I also served as one of two poetry judges.

Poetry judging seemed fairly straightforward. First, I needed to conduct the initial online judging during a short window in early May. Then in late May, I had to go to the fairgrounds for in-person judging. But nothing went as smoothly as planned. The new online system had glitches. It crashed. I had to judge the poems twice, and still, it didn’t perform as expected.

I knew about the in-person judging well in advance, so I had plenty of time to find a sitter. One of my last remaining sitters, Miss B, had disappeared without warning early in the year, and two months later, reappeared. I was still searching for additional childcare so I accepted her apology and cut her some slack. Miss B’s fiancé had inoperable, terminal cancer and that had to be tough. I needed the help, and she was great with Katie. So I booked her for the day of in-person judging, plus a date night with Christopher on Saturday night.

On Saturday afternoon, Miss B texted: We’re at the ER. Jason needs blood transfusion. Can’t work tonight, but tomorrow should be okay. I’ll keep you posted. Sorry!

Christopher and I stayed home and cooked dinner with Katie, who was thrilled. As we chopped onion and bell pepper, I said, “I hope her fiancé’s going to be okay.”

Christopher nodded. “What will you do tomorrow if she can’t work?”

“Not sure,” I said. “Emma isn’t free.”

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Miss B didn’t respond t my texts or call. By Sunday morning, I was in a mild state of panic.

“No worries,” Christopher said. “I’ll watch Katie.”

I hadn’t expected this. “Are you sure?”

“Yeah. We’ll have fun.”

I pushed aside all the ways he could not have fun and gathered my things. I was going to zip through the judging and hope for the best.

My fellow judge failed to show. The online system hadn’t rejected enough poems. I gulped coffee and struggled to catch up. Christopher texted that he’d taken Katie to Starbucks. What did she like to eat? I sent him her order and worried about what might go wrong. What if Katie got overstimulated? Or wanted different food?

Christopher said they would swing by the fairgrounds and say hi. Maybe have lunch with me.

I started to sweat, thinking of new things that could go wrong. When they didn’t show up, I choked back my panic. Had Katie lost it on the way to Pleasanton? Was Christopher lost?

No, Christopher texted. Everything was fine. When they reached the entrance to the fairgrounds and Katie saw for herself that the carnival rides were gone, she requested a park so she could swing. I found a nearby park, Christopher texted. She’s been swinging for 30 minutes. Having fun.

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I wanted to cry with relief. Not only was Katie managing an unexpected change of plans, but the man in my life was handling whatever she threw at him. With ease.

I felt the knots relax in my shoulders. I breezed through the rest of the poetry judging, filled out the award paperwork, and spoke with the missing judge. Then I headed to the park where Katie and Christopher waited in the shade. Christopher was sun-burned, but otherwise both of them were relaxed and smiling.

I thanked Christopher for bailing me out. “It was fun,” he said. “She’s an amazing kid.”

Katie beamed as we headed for lunch. I probably did too. We had all achieved a first that morning.

Until next time,
Cynthia

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Summer Vacation
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IMG_1456It’s June, and my daughter Katie has a one-week break before summer school starts. (Actually Open Mind School operates year-round, so unlike most public school programs, it will be regular school that happens in the summer months.) It might be a short break, but we are packing in as much fun and relaxation as possible.

Following her graduation ceremony last week, Katie immediately headed off to four days of summer camp at ViaWest in the Cupertino Foothills. This gave me several days to spend with my boyfriend Christopher, attend poetry events, watch movies, and hang out with girlfriends.

I picked Katie up from camp Tuesday afternoon, and we had an evening to do piles of laundry. Yesterday we drove up the coast to enjoy warm sand and ocean breezes for a few days.

I’ll be using my time to relax, read, hike, and do some writing. Katie will do as little as possible besides hike and swing. We both need time to unplug and rest. It’s been a busy spring.

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In two weeks I’ll be back, blogging about my unplanned life. Whatever you are doing, relax a bit, feel grateful for what you have, and enjoy the beautiful summer weather. I’ll see you soon!

Until next time,
Cynthia 

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Katie Graduates
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graduation-2148715_1920Tomorrow my daughter Katie graduates from 8th grade. I honestly have no idea where the time went. It’s such a cliche, and yet, utterly on point. My brain keeps shouting: How did this happen?  It’s simply not possible. You have made a MISTAKE!

On the one hand, I’m shocked at how quickly the time passed. On the other, it feels as if both Katie and I have struggled and worked incredibly hard for years and years to reach this place.

In our case, both statements are undeniably true.

What’s different this time is the feeling that Katie is actually graduating. That she has earned the right to pass on, to matriculate, as opposed to merely moving from grade to grade due to age or a school district’s convenience. She is graduating. My baby is graduating from middle school.

I think I’m going to cry.

10931724_10153038045125801_5193524999750374991_nWe are roughly 18 months into our journey with the Soma Rapid Prompting Method (Soma-RPM) and Open Mind School (OMS). Despite attending school only three days per week, Katie has gone from a child labeled “unteachable” and doing kindergarten-level academic work (if that), to one who can research and write reports, use PowerPoint, do basic math, comprehend middle school chapter books, and offer opinions on current events:

“David Hogg is smart.”

“Guns are dangerous.”

“Volcanoes are great!”

Her ability to self-advocate and regulate her body has grown tremendously. She is gaining skills and independence. Her communication continues to improve. Her tantrums are fewer and farther between. Yes, she still has her teenage moments, still has meltdowns, still struggles with many tasks that most people take for granted, but on the whole, she is doing incredibly well.

I’m proud of Katie. None of this progress has come easily. I wish that weren’t the case, but it is. Yes, we still have a long, long way to go, and yes, it’s taking far longer than I ever anticipated.  But I know that we are on the right path.

I wish almost daily that I discovered Soma-RPM sooner. But it’s senseless to beat myself up over that fact. I did the best I could. Eventually I found it, and it’s working. It’s working better than I ever expected. I found OMS too. And while Katie and I may take a step backward every now and then, overall our movement has been forward. After years of spinning our wheels, we are finally making progress.

When I look back, I realize we have come a long, long way.

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Which is why I believe we have earned this graduation. And tomorrow, I plan to savor it.

Until next time,
Cynthia 

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