Into Awareness

"Will you wear this heart for MPS?" I turned to see who had asked me that, and found myself face to face with a woman holding hands with a little girl in glasses. A longer look at the purple construction paper heart on a string of purple yarn, tied so that I could hang it around my neck, made me certain of what I already suspected: I did not want to wear that heart for MPS. 

But, rejecting it would be, well, heartless, so I took it, asking with attempted nonchalance, "What is MPS?" After all, that little girl was looking at me. Like, really looking into myself.The woman responded, "It has 21 letters." as if to say, "Yeah, Google it."

Then, I asked what everyone wants to know. 

Is there any.

hope?

She shook her head sadly and said, "Not at this time." From hip height, big bespectacled eyes watched me as I hung that string of yarn around my neck. The paper heart fluttered down and I noticed the date "May 15" on it. Probably, an official day for raising awareness about this terrible disease, I figured.

I don't even remember taking it off and tossing it later. I sure as heck didn't google, "MPS." That was my luxury then, to walk away from a morning of volunteering at my local elementary school and let terminal childhood illness drift out of my mind. Just another heart-breaking detail that recedes as the present moment makes its incessant demands. Except.

Except, not long afterward, I started to work at that school, and her little hand was put in mine on that exciting first day. That was when MPS was no longer something I could, or would, walk away from. 

Later that week, I finally Googled it. Actually, I YouTubed it. I watched video after video of young lives lived through the slow accumulation of metabolic byproducts in their bodies, no thanks to one missing enzyme in their cells. Chubby, extra-active, cherubs become silent still angels with smiles that stop the whole room (or boat in one video.) 

I cried, of course, stuck in the pitiable position of having to hope my new friend would live long enough to need all of the machines that supported and sustained older SanFilippo (MPS' nickname) kids.

So, is there any hope? Maybe. Research has been yielding promising results. There is also more awareness, and funding, and connection between families impacted by MPS, thankfully.

There is also something else, and I'll give you a hint: It's heart-shaped. 

Because, in my line of work: Special Needs E.A., Caregiver, Gandalf, in general -there is so. much. love.

Love, for all of the best of people, all people, everywhere I go with her. Love, for her surprise victories, that when you think about them, seem more tremendous than a strong man lifting a million pounds while spelling Mucopolysaccharidosis, backward. Love, for determinedly holding life to a high standard of quality, and then getting to live it with her. Love, knowing that the immensity of pain is promised will absolutely and always be dwarfed by the joy of this friendship.

Not Freaky Friday Fans

George: Welcome to our reaction to Freaky Friday, the movie.

Mae: Some parts were Very Embarrassing, and some parts were like, Good Job, Guys.

 It's about this teenager named Anna. She's 14? 15? years old. And her mom is Tess, who is, maybe in her 40's?

So there's this very big difference in age, and there's this very big difference in behavior. Anna is into punk and rock. Most of her stuff is pierced, she has earrings and that stuff.

George: I did not like the movie that much. At first, Anna's life is unfair sometimes, but you know, sometimes what happens is her own fault.

And, once they switched bodies, I freaked out a little, and then I panicked. Then, I was watching the rest of the movie like I didn't care.

And then, the rock concert, what happened was Anna, as her mom, didn't want to play, but she played. And in the end, everything turned out fine.

But just, why? I can't believe they would make a movie like that.

Mae: At some parts it got very disturbing. It got very awkward.

A grown woman is calling a teenager "Mommy."

Spoilers: Anna's friend, like Best Friend, threatens to put duct tape over her mouth and I was just SAD.

So I ran upstairs to collect my emotions and try to calm down. I thought, "Buttercup needs to see this."

I returned with her because she makes me feel better when bad stuff is happening.

George: I'm never going to watch that movie again.

Mae: Also, when they go to the Chinese restaurant, it gets So Dang Racist.

George: They could do better.

Mae: Embarrassing.

George:We don't want to switch with anyone, okay?

Mae: I want to see the world with my own eyes. I want to keep it this way.

George: I want to keep my eyes. 

Close to Special

The baby is ten.

She is also funny, bright, bouncy, active, a great artist, driven, and a sister.

 And a special sister. 

That last one is pretty defining, and it just dawned on me. Why? Because I've always said to myself that it's hard to imagine George being George, without Mae.

Just days before turning the big 1-0, she was mentioned in my conversation with an Autism Specialist. I was talking about George, and how much he followed his little sister's example when they were both younger. At times, George looked to her as a model for how to act, or feel, or act like you feel. He is who he is because of her. That's always been obvious. She, however, slipped right past my noticing. She's a special sibling, and as she grows up, it shows.

Last week, we celebrated her birthday, and the end of anyone in this house being of a single-digit age. An appropriate number of helium balloons awaited the birthday girl's arrival home from school.

 She was elated and generous, sharing the red balloon with George. 

Red is George's favorite color. Like, favorite, in all ways, for all things. RED BALLOON.
Overjoyed that his sister's birthday meant good things were coming his way too, he decided to take his balloon for a romp around outside. That's when the bewitching beauty of his other fav, Lint the Cat, caused him to look away and forget about hanging onto the balloon firmly. He looked up, just in time to realize it was lost forever. That merry shrinking red dot, bobbing away in blue sky, just
getting loster,
                              and loster,
                                                      and loster.

I'll be honest. There was wailing- that morphed into a roar of agony, thanks to the chuckling of a mean big brother. After all, a thirteen year old isn't supposed to react that way to losing a balloon, is he? ha. ha.

George found consolation inside, if not what he really wanted, which was for me to say that I would immediately drive to the store and buy him a replacement balloon. Regretfully, I was not able to offer him that remedy, but did acknowledge how hard his loss felt, offering empathy, hugs, and a listening ear.

He said he didn't need those things. He shouldn't be feeling this way. He shouldn't be acting this way. He should stop thinking about it. Thinking about that moment, when. STOP! When the string left his hand and..STOP! Just stop thinking about it. Just STOP feeling bad about it.

His breath was quick as he worried more and more, would he ever be able let it go? The fact that he literally had LET IT GO? He started to panic about feeling intense grief forever, so he told himself, sternly, repeatedly, not even to start.

Before I could abandon wiping a counter and come drop some state college psychology on him, Mae stepped in. She got closer to George, who was sitting at the table, dabbing tears away from his eyes and trying not to feel like he acted, or act like he felt. She put a hand on his shoulder and came down low so their eyes were even. She said to him, very softly, "Listen, George, you are really close to me. When you feel bad, I feel bad. Those are the kinds of feelings you should share. So, if you feel bad, you have to be able to talk to me about it so I can help both of us feel better."

I closed my mouth and tried to look busy. George sighed, and moved on to a therapeutic writing project: a postcard to balloon who got away. Mae came to me and whispered loudly in my ear, "HE KNOWS HE HAS AUTISM, RIGHT?"

Well, shoot, now he does! (Just kidding, he already did.)

But what I didn't know, until that moment, was that Mae has a special condition too. And it's wonderful.

She is about as close as someone can get to someone else who has special needs. She has grown up with an outlier in her definition of normal. Uniqueness became standard; boring and aggravating sometimes, lovable and extra-cool other times -but never ever unique to her. She takes for granted, things which others struggle to understand. Her sense of justice is instinctive, identifying so deeply with the interests of another individual who may be vulnerable or at a disadvantage. She knows how to honor emotions, and forge a way, wide enough for two, through them.

 Look, we're all Modern Independent Ladies here, but the fact is, I can't imagine Mae being Mae, without George. 

She might be as bright, even if she weren't someone else's nearest example of how other kids act; but her buoyancy would never be this strong, if she'd never had to share it with someone else.

Fall with Us

Sometimes fall feels like Autumn. Much-needed change, and much-needed rest. If you like school clothes and sweaters more than shorts and t-shirts, it's the most! wonderful time! of the year! Like another favorite feature of the season, a comfort food recipe, it's equal parts invigorating beginnings and peaceful repose.

And sometimes fall feels like FALL. As in falling, careening, skidding, smouldering, over the finish line of the year's end, never having gotten a handle on some unexpected challenges over the last eleven months. That's us, this year.

This year, we launched our oldest student out of the house, and into the world. New baby chicks joined us in spring, joined each other in the summer, and then joined the pre-existing flock. The human ladies of the house went to Mexico for a month of aventura, Three out of four of the school-goers here made a transition to a new school this year, with one of us being me, returning to college to finish a degree in education. Brisk!

But, on most of these things, the axis tilted away and things started falling.  This year, Henry leaving was not without impact The other kids' roles shifted; we have all been on this curve together, learning how to be the new us.

Then, a family of what can only have been Chupacabras nested under a nearby house and feasted on our young hens relentlessly over Mae's and my month of travel.

 Now, there's one lonely girl, with a whole coop to herself.

Oh yeah, and about this time last year, I woke up, sat up, and then...
                                             just.......
                                                             started.........
                                                                                  tipping over.
Powering through the wooziness, I got up and ready and went to work, where the hallway
seemed.....
                 to........
                             be.........
                                          tilting? Or was that my imagination? This, and other weird symptoms, manifesting over the next 12 months led to, not only many medical visits and tests, and scary suspected causes, but pretty much nothing in the way of actual answers; it made every. other. thing. harder. to. do. And some things? Just impossible.

Changes and unrealized goals. Everywhere, depending on your outlook, there are signs of our failure to preserve the fleeting. A hoop house untended, the lone hen, kids growing up, their pets aging.

Melancholy yet?

Oh good. This is the great thing about fall, or autumn, depending on how it's going for you. The passing over the hill of the year, a time when loss surrounds us, we don't have to pretend that things are growing and full of promise. That's what spring is for.

Notice we don't ask anyone what they're "thankful" for in springtime? Ha! What'd be the point? Everything is awesome when the sun is shining and birds are chirping. How about when the flowers have faded and the winds are howling? This is why, in spite of it being a ritual, enshrining an ethnocentric fairy tale, in spite of having nothing special planned, I am really looking forward to Thanksgiving this year.

 Who wants seconds on small pox?

This year, I'm thankful that we are helping each other as a family, finding our way. That we have a big funny handsome reason to visit Portland, and one free egg a day. And that, as a way to improve my physical health, I have begun to take care of myself as I never have before in my life. That's going to have to do this year. Call it thankfulness or stubborn appreciation, maybe Pollyanna glad-gaming, which is fitting, considering the U.S. Thanksgiving honors a sugar-coated rendering of a tragedy.

When Autumn feels more like Fall, gratitude feels more like reminding yourself that it could be worse, and maybe that's got to be good enough.

Tú do Tú, Unless...

Five summers, five trips outside of the United States, the last three of which have been made with one of my kids as a travel companion. I have enjoyed many privileges in this life, but little has made me as reverent and grateful as having the resources, support, and health to explore other corners of this world with my children. They grow tremendously from being taken out of the life they take for granted. At first, the experience of being a foreigner is jarring, but it doesn't take long for them to adapt and incorporate all of those differences into a new idea of normal.

This time, it's her turn.

My daughter, the brave and adventurous little lady, charmer, and amiga de todos. She and I are spending a good chunk of our summer in a country that is enormous, diverse, and sensational. We are en México.

In one week, we have been in two different cities, but no matter where she is, one thing stays constant: Mae loves a good playground.

She can't speak with the kids she meets there, beyond greetings and goodbyes, but that matters little to any of them. They communicate through the language of kids at play, which involves silly noises and a great deal of running around for no discernable reason.

Other things she appreciates? Fancy hair accessories, barely practical footwear, cute dresses, and pink nail polish. All things I lost interest in over a quarter of a century ago. So, how does it feel to have such a quintessential daughter who is clearly not a mini me?

Wonderful, that's how. Is that because I secretly love all the girly affectations? Not really. It's because all of those things are a sign that the space around her to determine herself for herself is present and healthy. The less she is like me, the more encouraged I feel that we have something good going on here.

This principle applies to so many differences, with so many people. Beyond "tolerance," or "appreciating diversity," is something else; something unseen, but so important: space. The nothingness that is a right, not a favor granted or sanctioned by me or anyone else. That space in which someone feels free to be something I am not is exactly the same space that allows me to be what I am. 

If I needed a selfish reason to accept differences, there it is. I can skip any convention or ceremony I choose, thanks to the freedom someone else enjoys to participate enthusiastically.

Sure sounds good, doesn't it? But everything has its limits, so where does this healthy space start to become harmful? What view or practice is so far from my values that it feels like it shouldn't be acceptable? That's easy. Basically, any view or action which inherently denies or hinders the freedom of self-determination for others. That is the only wrong, and it is how a deep joy for the various ways of dressing, thinking, worshipping, and eating stops before becoming acceptance of bigotry.

Like so many truths, this almost seems at first like a contradiction. All we need to have in common is a belief that we need nothing else in common. Everthing else is just like polish on toenails: superficial, colorful, and subject to change.

A Farewell to Wings

Warring factions, cold beady eyes, narrowing pupils, showy displays of aggressive territorialism, inability to see that what should bring them together is far greater than that which divides them: No, I'm not talking about last Thanksgiving, or even next Thanksgiving. I am talking about something I am calling BirdMerge.

That is the the name for the bringing together of our two groups of pullets, formerly the new chicks we bought, and then the other new chicks we bought a month later. By the way, "pullet" is the official term for those chicks you bought four or five months ago, who nobody wants to see pictures of anymore.

The babies are all growed up now and need to go live with the adult hens. Only thing is, chickens aren't the most welcoming to newcomers. A new bird introduced into an existing flock is definitely going to be challenged, will have to be assertive in order to get any food, and faces risk of being attacked to death by the other hens. We have our tricks for that get-to-know you phase, but this time around, we have an additional peace treaty to eggotiate. We need to get our two sets of three pullets to think of themselves as one set of six pullets before they all move in together with the older girls.

Only, again with the hostility toward newcomers. The first coming together quickly became a coop d' etat. There is a month age difference between the two sets of birds, and the older, bigger, black and white ones knew it. When we checked the birds after their initial fighting died down, all of the younger golden pullets were huddled in the corner, their heads sticking through the bars of their cage, out of pecking reach.

So, the two separate groups went back into two separate cages, but those cages were scooted right up against each other in the hoop house. For a month, they lived side by side, face to face, with only an inch of space and some lines obscuring their view of each other.

Time passed, as it does, and that became normal to their little chicken brains, to look into each other's eyes, hear each other's breath, view one another through lines that almost seemed not to be there at times. The sameness of their experience came to dominate their other thoughts. Together, they wondered when those distracted primates would return to refresh their water? Or, what was that barking sound? Isn't this hoop house too warm today? Someone should come and open the door. Oh, here's that cat who can crawl under the door again. Say, those radish leaves are getting so big, I think I can reach one through the cage!

Chaucer once said, "Familiarity breeds contempt," but chickens don't read, so they don't know that. To them, familiarity breeds, "I will not try to end you." A month of adjacent captivity made them nice and familiar, so the stage was set. For BirdMerge, take two.

Factors I've noticed that make a difference when trying to broker a peace treaty:

Abundance: Trying to convince opposing parties to be peaceful and generous cannot happen in a deprivation situation. There needs to be plenty. Plenty of space, plenty of water, plenty of food, in this case.

Neutral Ground: Neither side wants to feel like it gave up its space to the other, even if they end up actually doing that. This cage set up is open, and includes a neutral space that neither set of birds considers its territory. They both ended up in each other's cages eventually, but not one group exclusively taking over the other's space.

Conflict Processing Space: Instincts matter here. When new flockmates meet each other for the first time, they're probably going to have to fight it out a bit. Usually it's mostly fluffed-up feathers, hopping, wing-beating, and a minimum of pecking. Concerns would be excessive pecking and denying the newbies access to food and water. 

To a degree, it has to play itself out, so that the more vulnerable one can prove itself. Those more vulnerable ones will stand a better chance if they are old enough, have numbers on their side, and are given enough overhead space to show how high they can hop.

Last Saturday saw the great merging. I put their cages on a seriously neglected part of our backyard, facing each other, doors open, with pieces of an old baby crib creating a connecting tunnel.

Slowly, each set of birds left their respective residences and ventured into that unknown patch of jungle between them.

Once again, they saw each other, faces only slightly obscured by lines; but these lines could be trampled and eaten.

This was normal, only better! The two trios grazed and ambled into each other's spaces (mostly) peacefully, and have been a content sextet ever since.

Happily Feather After. The End.

All About That Space, and Sexing Chicks

Leaving this place was the beginning of our journey home, eight months ago.

Here, Thomas and I had been welcomed graciously. to live for a month.

Here, my friends and I incubated an idea. In these spaces, so well suited to teaching garden and kitchen basics, we had done just that, with the always impressive residents and students of Fundación Niños de los Andes.

As we left to catch a taxi to the bus station, to begin the long trek back home from Manizales, Colombia, I turned and took these photos, in a moment of reverence for the role this place, and its specific attributes, played in realizing a dream.

Call it an eternal soft spot for the unsung hero, but I think thinking about the silent stoic spot in which something is supposed to happen is also pragmatic.

You have to plan the void, it's step one in most projects. So goes it with a workshop, a blog, a home, a garden, a brooding box, you know, your average wannabe backyard farmer's usual domains.

Back home, and a whole fall and winter later, we are now entering year eight of domestic hen management, and have decided to bring some new little ladies onto the team.

Sure, it's fun to shop breeds and dream up cute office lady names (I WILL HAVE MY BRENDA!) but before hitting the feed store to pick up the li'l peepers, we must make sure they have a place to stay that meets all of their itty bitty cute wittle needs. As adorably fluffy as they are, their body temperature still can't sustain a long time away from a heat lamp, so their spot must be ready for them immediately. Commence: void planning.

We start with the box.

You can go different ways with this, depending on what you have handy, but I like something high-walled and sturdy. Over the years, this part of an old tool trunk has been home to not only chicks, but ducks, puppies, and kittens.

For chicks, we use a couple of inches of shredded pine bedding to keep them warm and cleanish. I change it out weekly when they're a couple of weeks old.

For the feeder and water dispenser, it's a good idea to create a sturdy base first, with a heavy plate. This minimizes the amount of bedding that invariably finds its way into the food and water.

Slap a heat lamp on that bad boy and you're done! 

The heat lamp is essential, and is usually easy to purchase wherever chicks are sold. Baby chickens cannot keep themselves warm enough without one. 

But here's the equally important spot, far from the warmth of the heat lamp.

Why does this cool zone matter so much to the health of young hatchlings?

Because they must be able to move across a spectrum of temperatures, as the larger ambient temperature fluctuates throughout the day. Warm, cool, and all points in between: they need the range and freedom so that they adjust their location and stay healthy. It's also not a bad idea to park the food and water in the middle, so it doesn't get bacteria-nurturingly warm, nor tummy-chilling cold.

Oh yeah,  if you have any curious critters sharing the space, be sure to get something sturdy to cover it, that doesn't trap the heat or air inside the box.

"What? I only want to play with them! (with my claws and teeth)"

So, it was off to the farm store to buy some babies. Only this time, while we love and care for them fully, we are also holding them at arm's length for the first time, and here's why. And how. 

Why: These chicks were bought "straight run," which means their sex has not yet been determined. Seven years ago, our first flock ended up being 50% failure, despite having been "sexed." Our backyard farm is an arcane example of gender inequality: Hens Only. So, when we heard cockadoodledoodling, we had to send two of our beloved babies packing . 

This year, when we found out the only chicks available immediately were straight run, it should have meant no chicks for us, for another month or so. But, we took to the internet and discovered that with some breeds, you can compare chicks and look for several physical traits and try to buy only females. 

Thomas was tasked with making the cheat sheet, on sexing Barred Rock chicks, for us to take with us to the farm store. It was a meeting of the minds, down at the co-op, as Geza, Thomas, and I compared foot color and head spots, gently extended tiny wings, and generally bored the good staff of the store. We made our best guess and brought home these three.

"Did you just assume my gender?"

How: The plan this year was to acquire five chicks total. However, instead of buying five straight run chicks, we only bought three. This leaves room for some losses, and gives us a chance to buy a few more chicks later, when sex-link breeds (chicks whose markings indicate their sex) will be available.

The cold fact is, any and all of these baby birds may only spend a few months here before crowing one day and moving out the next.  That'd be sad, but here's an old farm trick for keeping baby animals you want to cuddle, despite the fact that one day you might turn on them and kick them out or cut their heads off: No names, office lady or otherwise.

Seven years of doing this, okay? We're not brooding little babies, we're fully feathered flocksters! We can be tough and zen and grown-up about things. We will give this time more space, wait, and only name the ones we are sure are staying. 

Except you, Brenda, even if you are a rooster.