my sister’s. wedding

any one can get married, but it takes a musician. to evenually marry everyone.
i mean that the musician is the conductor of. the whole thing. the music is the glue that holds the service together.

freya and keir got married last sunday. freya was beautiful please know that she made her dress. keir was handsome. they are beautiful together and have my love.

Shitty-Wonderful

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Photo by Kristina Paukshtite on Pexels.com

The fact is that although you and I are co-writing this blog, Owen, not everything I have to say is about you. So forgive me, but I gotta whine. You can put your two cents in later, ok?

I began texting this thought to some friends, but this thought is too big for texting. I have been chewing on it for a while: motherhood is a shitty-wonderful job. Okay, it’s one of them. One of many.

I tried to explain my thinking to parent friends in a letter-I-never-sent, written by candlelight tubside at the end of a long day. But I wasn’t sure if my friends would understand — and now you can all wonder whether this post was the letter originally meant for you. And it was. All of you. That letter, it turns out was the first draft of a brewing blog post. If I had only known, I wrote, how gut-wrenching this job of parenting was to be, I would have been way to chicken to do it.

So I am glad I didn’t know.

For instance, raising babies and riding the highs and lows in that cozy relationship nest you build together, longing for and delighting in each sign of Growth and Maturity! — only to realize the end game is being left. See ya. Empty nest is not a joke. And for those parents whose kids stay local: You. Have. No. Idea. So don’t talk to me.

And when parenting morphs into a new and different kind of support role: wow. Watching your young adult work to integrate into a world that misunderstands, mis-judges or ignores him or her, listening while they voice their pain — their RAGE — while you are giving your all, witnessing while the voiceless reach out but go unheard by family, that is the like being stretched on the wrack.

And although I doubt it is standard protocol for human agony, semi-sweet chocolate chips are called for. (Never mind the carob. Pure, organic chocolate morsels) Can’t help mocking myself. It helps me keep moving on. So, a 1/2 bag of chocolate chips on the sly and a mommy-time-out later, I am (over) charged and (if feeling ill) ready to go. Back into the trenches.

Mothering is shitty-wonderful I say. Parenting is what I mean, though.

I was so proud earlier this summer, watching our son leave the dinner table with his tantruming baby daughter. He correctly understood what that tantrum was communicating. He listened to her. I watched him sit with the baby on the ground at the backyard fire pit, allowing her to ogle the blazing fire that she so desperately wanted to see, but not to touch it. He was hungry for his supper, and (I suspect) worn out with dealing her needs at that moment. But he rose above that, and above any opinions that any grandparents at the table might have had about her behavior or his choice of how to handle it. He followed his gut and/or his convictions. Then they came back to the table and ate supper. I know at his age I would not have been wise enough to see the value in doing what he did. But I could see it when he did it. It was a teaching for me. It is so good to be taught. Shitty but wonderful, in fact. To quote Glennon Merton, “Brutal and beautiful. Brutiful.”

My daughter called last night. She took a while to get to it, but she was able to say a very hard thing. Please don’t evaluate our relationship based on how often I call you. Or how often I don’t call you. I just don’t call people, she went on, I probably call you more often than other people. Well, ok, I was able to say, I just need to find some people who want to connect more often than once a month. That’s all.

Valuable. Satisfying. I hope she felt the release in saying it that I felt I hearing her words. You are more to me than some numerical extrapolation of our phone minutes. Please don’t impose that evaluation on me – or us.

Our children are our teachers. And our forebears also keep on teaching us long after they are gone. Too late I understand some of the pain I caused my dad. Raising a young adult with special nees is difficult, still parenting as grandchildren start arriving is much more difficult. I judged my father harshly for his apparent lack of interest. I longed for him to coo and to cuddle, to show his interest in my children in certain visible ways that would make up for the absence of my mother, who had died many years before. Now, life has provided that I shall know by experience how it is to grandparent while continuing to parent. The truth of course is it’s shitty-wonderful. I am thrilled to be a grandma – I just don’t know if I will have the energy to be any good at it.

But the upshot of this chocolate-infused moan, is…I guess more wonderful than shitty. Tough as things can get, I have to confess that I would never take back even the most difficult parts of my journey so far. Because each of those (after a lot of digestion) has resulted in my greatest growth. Deeper insight. And, yeah, each episode hurts like hell. The rack.

Which is my read of what Jesus demonstrated in permitting his cruxifixction, if you will pardon a religious digression. Whether you see Jesus as a guy, or as God-energy in a human form, the teaching seems the same. Everything I speak to you is a parable, he said. You will be crucified, to be re-born. Let go, and be taught – let your ego die, and live. Roses can grow great in manure, as long as it’s well-composted.

Yeah. I get it. More than that, I feel it. Ouch! Which gives me hope.

Your two cents, Owen? Is this one ok?

yeah. i like it. i think this one is ready to go.

Learning to Dance

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Fetal Movement by Gillian Bedford

It’s one thing to want communication for your child. It’s another to do what is required to allow communication to take place.

Let’s not sugar coat this. Most of us get impatient with people who require special work to know, or care for, or listen to. Our eyes glaze over, and we begin to think what we might be doing, elsewhere, when a friend take too much time or too many words.  I long to share with the world what Owen, Edward, and I have learned about supporting communication for nonverbal people. Especially with those now sitting in silence, or unable to make their language say what they want it to. But the truth is that facilitating communication is quite difficult. The theory is simple, the practice arduous. How many will have time, energy, patience to let someone speak who isn’t speaking on his own?

So as much as I wish for Owen a community of fellow typers, and for the nonspeaking folks I see everywhere to have access to this method, I have to wonder how many will be granted these tools to scale the barriers that stand in their way? Will families have time and energy to help their child/brother/sister speak? Will other people slow down their lives to wait for those words to journey down misfiring neurons and muscles, down uncooperative arms and fingers, to the paperboard or the laptop screen? If a person with autism turns away, if they look like they have nothing to say, will family or caregivers go after them to make sure that body movements are representing real feelings?

Owen described recently that when he want to run towards something, his body runs away from it. Ido Kedar describes the same thing (Ido in Autismland). How many of our young people with autism are misread this way every day? How many are punished in a hundred ways, lost opportunities, misunderstood choices, a life of constant frustration, because of their disordered, chaotic movements? We earthlings read bodies to understand people, and we believe what we see. Even when we know better.

Writing with Owen looks like this: it’s messy – lots of interruptions. It’s hard – for both of us. It’s slow. And it’s absolutely beautiful. There are Owen’s thoughts and ideas, his words, typed out, bit by bit, onto the tablet screen. Is there influence, depending on who supports him? I imagine there is. Isn’t there always influence? Owen is new to writing, he is vulnerable. Learning to support a typer is technically easy; the difficulty is all in the ego department. As a communication partner or support, you must learn to keep your opinions, your impatience, your expectation and assumptions about what’s coming down the communication pipeline,  your excitement even, to yourself. You are helping communication to happen, but the communicator isn’t you.

What makes me a good support for my son is that I am a highly intuitive person, and I have been reading him for meaning (often incorrectly) all his life. And I love it – I get enormous joy from hearing what he writes. I love his insights. But what makes me good is also what makes me dangerous. I must not guess, I must not assume based on my intuition. Being a communication partner winds up basically a spiritual practice: letting go control, in so many ways.

Do I have the chops for it? Will I allow resentment about what I could be doing (like my own writing) to spill into the energy between Owen and me? Will I respond to the siren call of impatience, the longing for Owen  to complete project, to come out my mouth? Even percolating in my brain, my anger, frustration, impatience, desire to control will shut him down (not entirely, but it sure doesn’t help).

And it isn’t simple to know where these boundaries lie. I imagine they are different with every person who types to communicate. But part of my job for Owen is to help him get  his body to table, while still allowing him to chose not to be there. I don’t want to drag him there. But if he types that he wants to write, I believe THAT, and not what I SEE. I am also learning to see his attempts. Owen tells us how hard he is trying, all the time, to go where he wants to go, to not grab what isn’t his.  So I speak encouragingly. I go find him. I tug on his clothing gently. Or I sit at the table and wait, believing in him, while he convinces his body inch by inch to get there. I do what seems to work for him. On the good days, I remember all this.

I love writing with my son. Even though the bitchy, mouthy, impatient side of me gets in our way, and Owen’s dark moods don’t help, watching another writer begin to express himself gives me enormous joy. So yes, praise God, I believe I can learn to have the chops.  And I am able to, as well as willing to, give my time. Owen will need other supports though — this is his first step. I remind myself that Helen Keller required a support to live and survive and communicate to the outside world. Owen will require these supports too.

Wonderfully, Owen’s personal support and his siblings have put real energy into learning to listen to and to support their brother’s communication too. The more people Owen works with (learns to be facilitated by) the better, to establish his own voice and improve his confidence and skills. 

It troubles me the inaccessibility of these tools. Once again the number of dollars in a person’s pocket seem to dictate the quality of their life, to the extent of having a voice. But I remind myself that the only reason that we know about Helen Keller today is because her parents were wealthy enough to go to the ends of the earth, looking for some kind of help for their daughter. I have thought of them, and of Helen and Annie Sullivan, so many times over these 25 years of our searching.  Their means provided Helen a one-to-one support and so a voice for her entire life, rather than sitting in a dark corner. And because it happened for Helen Keller, eventually it happened for more blind children.  Ido Kedar, and Matteo Musso, and Owen Simons are paving the way for others.

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Plastic Man

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Study of the world about me – as well as that between my ears –  convinces me that we have no idea the extent to which we evaluate humans based on how they look. We make assumptions all the time that outsides of a person (physique, accent,  behaviors) accurately reveal their insides.  What that person wants. How smart that person is. Who that person is, essentially.

Owen is here to remind us of how little we actually know, of even the most basic kind of knowing, about him, or possibly anyone else.

Plastic

i am an autistic person who loves plastic. the fact is that the plastic loves me.  i actually hate playing with plastic.  but I have no ability to stop my hands.  i think that kind of stinks.  you think you know who I am.  but the fact is that that is not the real me.  the real me is buried under all the behaviors.  just remember that the next time you see me.

i believe i will overcome the obsession. i will no longer be plastic man.

January 2019

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Owen wrote this in response to a call for articles on the topic of sensory experience. It was published in the volume 25, Spring 2019 edition of The Communicator, a publication of the Autism National Committee.  A few corrections were made of errors caused by involuntary moments, and spaces were added between sentences for clarity, otherwise it is as originally typed by the author, using supported communication. In supported communication the partner resists movements by the typer, and this resistance and emotional support allows a person with movement challenges to focus his movement and get his words down. For Owen to generate a capital letter requires a three step process with caps lock. He doesn’t always bother with them. Getting his body to sit still, and his hand to follow the direction of his mind is more important, most of the time.

 

 

“My Story to Write” 

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Owen in front of the Jim Henson Memorial, University of MD campus

Owen, Edward, Trum the bulldog, and I are back home now.  We still have work to do. Not all the rooms are reclaimed. But I no longer have the dizziness that bothered me for so many months. My arms no longer ache as they did, with lymph that is not draining. Home feels pretty much like home. Our house smells good – even Owen says so, and that boy has a nose for mold.

But as I try to get back to my writing here, I am blocked. As Owen’s own voice slowly emerges through the constant “noise” of unintended movements and mental distractions, I am more and more aware of the ethical complexity of writing “about” him – his behaviors, and our crazy life together. In the past as mother/ observer/writer, I described my son’s doings as I tried to understand them, dealing with my own pain by objectifying my experience  of him, imagining and wondering about his experience of us. Now Owen tells me “I AM EMBARRASSED WHEN YOU TALK ABOUT ME” after listening to me talk about him to his sister. I am discovering that he is a pretty private guy. 

Do I have the right to tell Owen’s story?  Human beings are not objects; one person’s pain should not be another’s entertainment. But what about my experience? I argue. Some part of this story belongs to me, too. People love to read about Owen. Writing this blog about my struggles, I find I gain insights about how to do it better. And through stories of our shared experience of the chaos his disabilities create, we help other people to understand very different kind of mind, a very different human experience. Surely that is a good thing?

“I haven’t written a post for Embracing Chaos since December,” I said, sitting down beside Owen. “ I don’t know how to go forward with it. I don’t want to invade your privacy.” Owen made a reflexive movement, and I offered him the paperboard and stylus. “I APPRECIATE THAT” Owen spelled out.

Doggon it! I thought. “I am really glad you told me that,” I made my mouth say. “But on the other hand,” I could not help adding, “your mom is a writer. Families of writers often have to deal with being written about.” I went out of the room to get him some clothes or a toothbrush. That ended the conversation for the moment. It is easy to get the last word with Owen. 

Stuck underneath an unresponsive and downright contrary body, Owen’s having any voice at all depends on someone remembering to ask, and waiting while he fights with his body and reaches for each letter. As I understand it, physically his body has its own animal agenda, mentally his thoughts run much faster than his ability to catch them into words, and psychologically he is riddled with anxiety about being seen and known. He must reach through all these layers to  have a voice. Facilitated spelling and typing offer a person with non-speaking autism a way out of prison, but it is like stepping out onto a swaying rope bridge across a chasm over fiery lava.  It requires trust and bravery, and a lot of practice.  In several of our conversations this winter, Owen has tried to impress on me how helpful to his writing (and his behavior) a SCHEDULE is. “But I am no good at schedules” I moaned to him. “I THINK THAT WE HAVE TO TRY” he compassionately spelled back.  

The issue of how to go forward with the blog was still in discussion when Owen and I visited his therapist Megan for MNRI (Mastgutova Neurosensory-motor Reflex Integration Therapy – more on that later). I chatted away to Megan about it while Owen, unable to tell his mother to shut up, received his therapy. Megan suggested we check out Brene Brown, author and TED talker on the power of vulnerability.  Of course I was very interested. (Had the topic been “The Value of Privacy” I might not have been so enthusiastic.) I think I asked Owen if he wanted to listen to it. I hope I did.  We drove around the Beltway listening the TED talk by Brene Brown that made her famous, and earned her nickname “vulnerability Ted” in some circles. I loved what she had to say. Owen’s body was very quiet as he listened.  (Brene Brown TED talk) 

The fascinating thing about Brene Brown is that she hates vulnerability. You can actually hear this her voice, as she tells her story. She only studied the subject so she could subdue it –  “to solve the problem of human pain, package it in a Bento box” and move on to the next agenda item. Very tidy. And then when her research seemed to reveal that to be vulnerable to being hurt is necessary to human growth and creativity, she had a nervous breakdown. Because of being such an unlikely and terrible poster child for the subject, she becomes an excellent spokeswoman for her subject. But it isn’t easy.

It seems to me that life (job, family, spouse, health…) often asks of us the very thing we are not good at doing. I have heard that often people chose a path that leans on their weak spot — like Brene Brown the control freak becoming spokesperson for vulnerability. Or Winston Churchill, Barbara Walters, and Carly Simon, all of whom have speech impediments, becoming public speakers.  Another way of coming at this subject is what Malcolm Gladwell writes in his book Outsiders — that there is no class of super- talented super-achievers outside the norm, destined for greatness. Gladwell claims that opportunity, luck, and 10,000 hours of focused practice are what made Bill Gates into Bill Gates, and turned a 1960s boy band into the Beatles. 

Owen by his personality hates being exposed, and yet his autism causes him to constantly behave in a way that draws attention to himself. Still all the attention we may pay his behaviors will never reveal who he really is, since those behaviors do not represent him.  He tells me he longs to become a spiritual leader, “a minister of some kind” which will require him to work through layers of physical and emotional resistance, and hire a support to help him control his behaviors and get his body to release his thoughts.  I think Owen is being called to an opportunity now to serve the autistic community, and his country, and really the world, by sharing his experience here in this blog. But like anybody Owen has a choice about how he responds to that call. How will he minister? 

“So how shall we go forward with Embracing Chaos then?” I asked Owen later. “Do you want to edit it? Or be a contributing writer? Or would you just rather not know what I am saying about you? “

“I WOULD LIKE TO WRITE AND EDIT.” Owen spelled out. “IT FEELS LIKE MY STORY TO WRITE.”  

And so it is. This is the first blog post that we are co-writing, about our joint chaos. It is harder, but it is very interesting. I read him a rough draft of this post. Then at the keyboard Owen typed:

i like the post you wrote mom. i think i like the part best where you tell about the ride to megan.

And what did Owen think about Brene Brown and the power of vulnerability, in artwork, friendship, and life?

Owen thinks for a long time before answering. Then he types, very slowly.

i think that it is very hard to be vulnerable.  because i feel naked when i make mistakes. 

I will be reading Owen this post again, in its final form. Maybe I will find out that it is not the final form… One thing is for sure, it is exciting to watch another writer emerge and find his wings.

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Owen uses his eyebrows a lot to communicate the affirmative

[Note: Owen’s voice is shown in BLOCK CAPS when his spelling/pointing is quoted, and in italics when his typing on keyboard is quoted.  Because typing a capital letter requires from him a 3 step process with caps lock, we generally do without capitalization at this stage.]

Crazy Season of Joy

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Looks like a snow flake? think again…

We are fugitives this Christmas. Running from the mold spores populating our home. The wettest season in recorded Maryland history left standing water in our crawl space, and havoc in our lives.

Owen was aware of the problem before we were. In October he spelled to me  “I hate our house.” Many weeks ago he sensed the presence of mold there “generally in every room.”

Today at the doctor’s he wanted to clarify this enough to grab his Apple tablet and shove it at me, until I got the idea that he had something to say. We sat in the waiting room, since we had run out of time with the doctor. The keyboard board rested on Owen’s knees, his typing hand (right) supported awkwardly by my left. With my right hand I tried to keep the tablet from crashing to the floor. Owen’s left arm thrashed about, as usual, pulling office magazines and costs into piles on the floor. But he kept typing slowly, letter by letter, with his right forefinger. He needed to be heard.

“I want to say that he. helped me. last time. (…) I think that he is right that mold in the house iuolloi is making me have  behavioers. [sic] please give him this.”

(this word “iuolloi”  makes a mysterious appearance now and then in Owen’s writing. Asked what it means,“very” he types back.)

And so the Christmas holiday finds us escaped to a Marriott TownHill Suite hotel, behind a mall in Bowie, while remediation and cleaning go forward.  It is easy to get gloomy. Still, in the  midst of our uprooted chaos there is still Joy.

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Last Sunday Owen, Edward, and I attended our first party for individuals who type to communicate — a holiday party! It was organized by Sarah Sohne (thank you! thank you!) and held at Reach Every Voice of Rockville, MD.  Finally — a local social network!!

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Attendees created collaborative poems, passing the paper around the circle, adding words to each other’s pages. It was a great non-threatening way to spell together (these individuals were all spellers on paper card and stencil, not yet using the keyboard as Owen prefers).

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Then typers shared new year’s resolutions.

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“Invite!” Owen instructed me, as the party was coming to a close.

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So I made sure to tell everyone there about HANDS the brand-new  social and support group for those with autism, especially those who type to communicate. Over on our side of the Beltway, Bowie/ Mitchellville – second Sunday of every month!  7:30 pm, at the Washington New Church! Faces brightened. Hopefully the word will spread.

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(Trevor’s poem – thx Trevor!)

Although Owen went out on a limb for our kick-off meeting  in November (prodded by his mom), reached out to write and deliver a few personal invitations, no one came. No one came in December either. But we aren’t giving up. It can take time to get something new started.  “HANDS” was the name of a support group many years ago begun by myself and two other moms. But that group was for the parents of special needs kids — this one is really for the young adults themselves.  Owen wants to organize people to go hiking, among other things.

And so, mold crisis or not, we are joyful. It is now six  months since our personal long-looked-for Annie Sullivan arrived, in the form of Marilyn Chadwick, to reveal for us the brain, heart, and humor lurking behind Owen’s behaviors. To  show him that he had a voice. This has been a miracle year — a messy, expensive, miraculous season of birth and growth. For Owen and for me and for Edward. For any of Owen’s family who engage with it. And, actually, even those who don’t.

Mold isn’t the only thing we’re growing around here.

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Hercules

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Owen began hitting me as soon as I coerced him to get off the van. I should say say swatting because his hitting isn’t very hard. But this swatting carried a lot more  intent than other times: anger and frustration. I was not prepared for it, groggy from my nap, and felt a flash of anger rise in me and I popped  him in the chest back before I thought about it. Sigh…Not a real good way to teach communication skills. Owen was upset. Still I found it hard to apologize as we walked up to the house, though I knew I should. I lectured him angrily all the way up the lawn.  My non-rational side still registered that I had been attacked, for no reason.

We came inside and I went right for the letter-board. What is the matter? I asked him, more calmly now. You need to explain what is going on when you hit someone.

I think that, Owen spelled out slowly, I am angry because you get friendships with people on the van.

Ah.

I held my arms around him in silence, just loving him, not saying much. This was a good instinct. Owen’s energy was heavy and depressed. It hurt to know that he was in so much pain. I remembered my mom talking so easily to my friends when I was a teenager, and ever so gawky. The frustration. The helpless feeling – how come it was so easy for her?

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However, because I am a word-oriented person and a mom, I soon began to layer word solutions over his problem.  “Honey don’t you know that the reason I talk to the people on the van is for you? So people will like you?” I said.  “And BTW, it isn’t a really great way to get to know people, throwing your trash on them and stealing their stuff…”

Owen pulled away and twitched and I put the stylus into this hands.

I hate my life. he spelled out. I am nothin — 

He left without finishing.

No matter what I do it is the wrong thing, I thought. I am getting hit for trying to help. I am hitting when I should be understanding, and talking when I should be silent. Maybe my mom felt the same way years ago, watching with pain her unhappy and awkward teen daughter, unable to transmit to me the social cues I lacked.

I sat exhausted. “I need help,” I said aloud. My mind raced through whom I could call – Marilyn? Angie? Sometimes the best solution is right there near to hand.  I went for my cell phone.

Can Owen and I come and see you at the office?  I texted to Edward.

On a conference call. Ok in 5 min maybe 10, Edward texted back, unsuspecting what an emotional roil was about to land on him..

“Owen we are going to see Dad,” I said. “Get on your coat.”

In the communication session that followed Edward facilitated, and I tried to support and transcribe, as we gave our son space to express his pain. It wasn’t easy. The truth of the matter is that there wasn’t and there isn’t a “solution” for what Owen is facing, the loneliness that his disabilities impose upon him, the longing for and the inability to generate friendship with another human being. But writing about it has to be better than just having those emotions trapped inside. I hope it was a relief to him to have his parents trying to help. It was a relief to me to share the burden with my best friend and feel his patience and calm.

After a while Edward needed a break and I tried facilitating Owen. Somewhere about here Owen gave up on spelling and went for speaking.

“A beast,” he said, looking me right in the eyes. One of his old familiar morphs, but how poignant it felt.

“No Owen,” I said, my voice breaking into tears, “You are not a beast. You are a man.”

“Pinocchio,” Owen said.

“No,” I wept looking right into his face, “You are a real boy.” The Disney-esque words were not funny.

We packed up to go home. Owen stood in the middle of the office, and I stuffed his communication tools back into his backpack.

“Hercules,” Owen said.

“YES Owen, ” I said, without turning around, “Yes. You are Hercules.”

*                     *                     *

Today, as we prepare to gather with family, I am gearing up and wondering how it will go. So many bodies stuffed together in a rented house for the holiday.  Owen both loving to be with family, but unable to be with family without grabbing their stuff and generally annoying everyone. It’s only for a few days.

Still I am thinking — Thank the Lord for all of you. For wonderful husbands who take time to hear their children, for open-armed sisters and brothers, who reach out across whatever divides us, for the voice of support at the other end of the phone, or just a drive away.

Get ready. Here comes Hercules.

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