Friday, November 23, 2012

Not My Foe

Day 2: Holiday Running Streak

31 degrees, high winds, wind chill in the teens

Advised to run north/south as winds race from the west, I was fairly comfortable in the middle of suburban blocks, only feeling the brunt at the corners and in the middle of each street as weighty wafts swept in from the west.

Before long, the wind switched and churned frantically, surprising me with its swift slaps from unanticipated directions.

OK. I won't let it chase me.  I'll run straight north and bear it.  This is to be a short run after all.

It railed on. The menacing hum and shift had tentacles wrapped around my knees, reaching down my throat, taunting my lungs.  Tempest tendrils reached under my hat, lifted my earbuds, drowned the music. 

Once my attention was absolute and my stiff knees slackened, poised for surrender, Wind whispered in contradictory baleful howls,

"I am not your enemy."

I am not your enemy.

We finished in constant company.

Thursday, October 11, 2012

Not Squander

I take a dozen or more photos nearly every day. Sometimes a hundred in one ordinary day.  My reasons are often practical ones like programming buttons on Addie's communication device with photos that have meaning for her. Other times I'm more focused on entertaining her as she visits the photo stream folder on her iPad later - she finds it a delightful surprise to both be reminded of daily occurrences, but also to see herself in them from an angle she didn't have the first time.

I suspect the prevailing reason I take so many photos might have to do with a hoarding instinct. I get to have the moment when it happens and then many times over with a picture. But with the photo, I also have the luxury of savoring tiny details I could never have otherwise seen having lived it only once.

I believe it's a hoarding of time, too.  I don't think about it head on much anymore, but I recall the day we understood what Addie's diagnosis was. I read through the symptoms and manifestations in a variety of medical references. So many things rang a bell with our girl we'd known for 2.5 years - the shape of her eyes, the fuzzy swirls of hair on her back, the curved double-wide thumbs, the early trouble nursing and keeping food down, her tiny size and missed milestones. So many things resonated with us it was almost a relief to understand a bit of the "why."

Except for one thing. One nagging short line articulated differently in every journal article and website.

The question of a possible shortened lifespan.

Despite a precarious post-surgery hospital stay in 2008 with everything in the balance, we don't live in this fear daily.  She is a healthy, hearty girl who has proven unpredictable in so many other ways. Still, I have long suspected that my nearly compulsive need to photograph every second may have been built slowly as I consulted each description of Rubinstein-Taybi Syndrome and found that vaguely worded doubt of longevity in each. The final reference I found preceded by about 24 hours my decision to quit my job of 12 years. As much as I may have tamped down the impact of that small line, it was a deciding factor in an act that shifted the tides for our family.

And so I have to admit that may be what trips my trigger thumb on my little phonecam with such voracity. I admit it and I leave it there just to be. It sits there while I focus and frame, snap and review.  I don't see it in the photos as they are mostly centered on joy or at least mundane contentment.

In the later evenings after all heads here rest idle on pillows, I spend a little time going through the day's photos, making random decisions about editing, dumping, transferring to Addie's communication device. There are some that I just keep to keep. I'll look at them from time to time, not really with any specific objective to the review in mind. Most days there are no remarkable pictures. Remarkable to me, that is. And other days there is one, or even two, that scream at me to be looked at, enlarged, reduced, looked at again, maybe shared, maybe not. Looking at them is the thing, analyzing every detail - how the sunlight and shadows tell the time of day, how the grass and leaves tell the time of year, how the cut of the sidewalk and patch of brick wall tells the location, how the clothes tell the relative temperature, how the expression tells what happened moments before or what is anticipated to happen moments after, how the angle tells how near or far I was, whether I was integral to the instant or present as an observer.  A nuanced, layered, continuous story in one frame - I can see both history and the future in these rare pictures.

Today I got 3 of them.





Friday, October 5, 2012

The 2 Biggest Reasons

Michael runs for a lot of reasons.  Over the years the reasons have slid up and down on the priority scale.  Except for the top 2 static slots.  For they belong to these girls...

Have a look back at his year's birthday cards I made for them (yep, a rerun):


*****************************************************************************

Sunday, Sunday, Sunday is the big run.  The run for RTS families everywhere, the run for me and for 2 pair of blue eyes above.

26.2forRTS

Sunday, September 30, 2012

In The Time It Takes


Training for a marathon is hard.  Yeah.  I've never done it, true.  But we'll be wrapping up my husband's training this week, with the marathon in 7 days.  Training takes time and focus.  His time, his focus. 

So we get less time, less focus.

That understanding comes from 4 full marathon training seasons and countless halves.  With this 5th full, we finally got smart: family runs.  We pack Addie into her oversized jogging stroller and Cate and I lace up our own shoes on weekday evenings when the mileage on his plan is on the lower side, as opposed to the weekend runs that are in the double digits.  Sometimes the miles he needs to put in on his shorter runs still slightly exceed our comfort, so Cate and I will turn off at our halfway point and finish out while Michael pushes Addie the rest of his distance.  First half family run, second half mother/daughter and father/daughter runs.

This has certainly made the training schedule easier on me, on the girls.  We get more of Michael's time, more of his focus.  I also think that despite having to ratchet his pace down considerably, towing his family with him once or twice a week provides an extra layer of motivation and energy for the marathoner himself.  His stride looks a titch jauntier to me when he's got Addie in front of him and Cate at his side, me grinning at all of it from behind.

The photos above are from last week's partial family run.  Addie was busy and so could not join us.  At our halfway point of Cate's longest run to date, we stopped to take in the fall colors before they are gone. 

Rather, they stopped to enjoy the colors.  I stood back and witnessed with a thin phonecam between us, these extra minutes two people I love had to do something good for themselves, for each other, I watched them look out, each pointing at something wondrous across the river, I saw them lean in and share a laugh, sometimes talking, sometimes not, their hands constantly moving; at times play-punching each other, often one hand hooked in the other's.

Come May or June, well after the aches from the marathon have worn off, Michael will reservedly offer the interesting fact that registration for the 2013 marathon has opened.  He will test the waters a bit as he makes his way around to telling me he's thinking of running it again.  He will expect my usual pause as the thought of all the hours of his absence settle back in.  He will wait for my mild and guaranteed, albeit not wholly heartfelt, encouragement.

And this time I cannot wait to surprise him by skipping the pause and asking with most sincere enthusiasm if he has the training calendar worked out so we can highlight the family run nights.  We will all look forward to these weekly family runs with a purpose for another training season.  There will likely even be a bit more jumping for joy.


Michael's firstgiving page will be live for a few months after the run.  He is again raising funds for families like ours affected and enriched by Rubinstein-Taybi Syndrome.  Click here to see how you can help: 26.2forRTS26.2forRTS.

Wednesday, September 5, 2012

This Pleases the Cockroaches I Live With Greatly

Karen -

Hey.  Got your keen letter yesterday.  I must say that I'm a bit ashamed of the P.M.S. one I sent you.  Ah, well.

I don't think I mentioned this.  The police have decided to spend their time & $ harassing us poor illegal workers for a while.  I know 5 people who've been deported & at least 10 more who've left in fear.  It seems the cops are going into even the smallest schools & plucking people out.  It's really kind of ridiculous.  They need us - people see English as a necessary thing (not a hobby language) and it makes up a substantial chunk of the economy.  Why cause such a whirlwind every couple of months?  All the teachers leave, the schools get fined & pissed at the old lawmakers, parents get angry at everyone...  And then we all spend a couple months building it back up again, right under the very same legislative and executive noses, only to have it pulled apart again.  It is so stupid.  I will not leave in fear. If someone grabs me by the collar in my classroom they'd better be ready for an earful and a handful.  They will, of course, send me home anyway as I could not argue my way out of doing this illegal thing I have knowingly chosen to do (though the law seems to be a seasonal thing here). 

My point was in starting this that I don't think I'd be overly upset if they made me go home now.  Because you see, I would not then have to make a decision, a rotten decision - I'd have no choice at all.  I've been rather homesick lately - familysick, I mean.  Those babies are all growing up without me pinching their cheeks & giving them stuff their parents don't want them to have.  But I got bills to pay & I really don't know how I'd make money at home.  Besides, I really think I'd better take advantage of my position - hemispherically speaking, that is.  Go see stuff, you know.

Thanks for the pictures.  I happened to open your letter at one of my schools.  The children were just floored by Seph's red eyes.  I guess the red from flashes doesn't happen much with Asian eyes because so little of the eye is exposed to it or something.  They died laughing at the picture of John.  They wouldn't believe he was my little brother.  One of the kids had this to say about the picture (almost an exact translation from Mandarin) "He looks like he doesn't smell nice."  Ah!  Tell him when you see him.

'Favorite color?' Green (varied shades).  'Favorite bands?' a bit of a tie - Almost anything traditional Celtic, James Taylor, Santana, Kate Bush, John's old ditty's he sang on the toilet, Whey Yo Kindergarten Chorus doing Head, Shoulders, Knees and Toes (don't tell the other schools that Whey Yo is my favorite.)...  'My position in the world?'  Linebacker, no doubt.

And yourself?

You just ask, that's how.  It may be a personal fault or feature, but I'll answer any question asked, especially by my family.  I trust people when they are honest enough to ask questions... it's other means of info gathering to be leery of...

You asked about the weather here.  It's just one notch below unbearable for me.  Disgustingly damp with an average of 94 degrees.  This pleases the cockroaches I live with greatly - they are thriving and have invited all their relatives...But I just get used to sweating like a pig.  I've a rickety old fan that doesn't do me much good when the electricity goes out three nights out of five.  Someone told me this was due to night road construction, but I still don't get it.  I did tell you how much the mosquitoes (who live in harmony with the cockroaches & I) love my hairy white skin.  It seems like I've been sweating and scratching for 4 months - because I have.  Ugh.  And 2 more months of this shit before the rains come & cool it down.

'Who are the Taiwanese prejudice against?'  Tough to answer.  They are very proud people - add to this is a bitterness over being a Republic, a part of China - kind of  self-orphaned, but with overbearing foster parents.  There is a sort of prejudice against anything or anyone not culturally Chinese, I think.  But they treat Americans like we are all close relatives of Madonna or Kevin Costner.  I guess, though, that I've heard the most rude remarks directed at Filipinos.  But they don't consider these remarks prejudice at all, they are just fact to them - i.e., of course we all know Filipinos are lazy, that's just the way it is (never mind that all things made in Taiwan are made by Filipinos and Indonesians who live and work in the factories here, away from their families and lives at home).  If you asked someone here about prejudice they'd give you the example of black people and white people in the good old U.S. of A.  To them, it's the only place where racism hangs.  Never mind again an apparent disdain here for the Japanese, Detroit-style...

Hey - I'm glad you included Fuji's address.  I am thinking that I shall pass through Japan on my way home for a visit in January.  Actually, if all goes as planned, I'll be taking a month or more to check out Asia and Indonesia. We'll see.  I'd dig seeing Fuji again.  Had I the cash by then I'd grab Susan when she comes & go check it out in October.  But I doubt that's possible.

Oh.  You say your other letters were too mushy or too abstract.  For who, buddy-boy?  You underestimate me if you doubt my grasp of either.  Bring it on.

I feel like I haven't really started this letter yet, but as I look it over I see it's time to end.  Tell everyone hello.  Tell mom to write - ha.

I miss you.  You write a mean letter. More, more.

Love and Peace,
Shin Tai Rae

_________________________________________________________________________________
Written to my sister 22 years ago  (1990, probably in about May or June) during my 18 months as an undocumented and illegal teacher of English and Spanish in Taiwan, R.O.C.  It arrived in today's mail from Karen.  All this time she saved this little piece of my little story and sent it back to me.  A whole lot more, not written on the pages, comes back to me with it. Thank you, my sistah.

Friday, August 31, 2012

Shoulder

The tweedy browns and maroons of the paneling and patterned carpet already weigh my eyelids as we file in.  Mrs. Jansta, the organist, plays a peppy enough tune, but for her instrument.  The sound of any note, in any succession at any speed has a drowse-inducing impact when wrung from a church organ.  Maybe it was a childhood in catholic school with additional church every Sunday that lulled me, a sense of home and comfort that made me sink into myself back then.  Or as I think now, many years later, maybe it's that I had long since stopped listening, even as a 4th grader, to the stories told again and again, with the same moral at the end that had felt more like common sense than revolutionary information for many years, even at that tender age.  Whatever the reason, Sunday mornings were the week's tranquilizer.

We were marched in.  We didn't have a regular pew, but a general area on the right side of the alter where we took over.  My dad, my mom and my siblings. Twelve altogether.  Though rare is the time when all 10 kids attended Sunday mass with our parents.  But always enough of us to evoke knowing nods as we passed.  Three boys and seven girls, under the command of my mother.  All the girls had thick locks rarely cut, the front few strands pulled primly to the back of our heads, fastened tightly with plain barrettes.  Though I could not have articulated this then, I now refer to our presentation as pious pagentry. 

The suddenly louder tones of Mrs. Jansta's organ announced the official beginning of the ceremony.  And then, to me, it changed from public display to something private and personal.  We all jockeyed for position. I don't recall if we had a regular order in our pew. 

What I do recall is this.

The smell of that morning's apple pipe tobacco pulling me to my right.  Finding the widest, flattest part of the thatched woolen suit jacket shoulder quickly with a glance.  I would not have much time - until I was visibly entrenched, I might be unseated by another pressing need - valid or otherwise - at any moment.  I needed to tuck in quickly to ward off the disturbance of reprioritization - I was the youngest girl and was bloody well going make that work for me.  Here, anyway.  It'd worked against me enough - in the area of shoes and clothing of my own, for example: someone had always broken my things in before I got them. So on certain Sundays I rallied and found the coveted spot, breathed deeply the old smoke and spicy dad-scent, and leaned my right cheek onto the tweed.  Even before I had decided to let the full weight of my head drop, my eyelids fell one more degree.  My cheek already felt a bit clammy and hot, but this would be it, the spot. 

My dad - it's hard to say my dad because he was our dad - shared in all aspects, with so many others, at all times - didn't really make a move of any kind.  He bore the lean and that was all I needed.  I felt more cozy than if I were under my pink sheets at home.  It was home.  Church sounds and the sharp, earthy wafts of incense, with a gaggle of relatives around me, and one square, solid shoulder for just me to burrough into for 40 minutes until the sign of peace and then communion. 

Though I liken it to home, I didn't have many of those Sundays.  I was probably 9 years old the last time I let go into the warmed shoulder tweed.  My Addie is 9 now.  My dad died of pancreatic cancer on September 1, 1978, 34 years ago tomorrow.  I was 10 years old.  My dad was 46 years old.

I think though, that today I got a glimpse of myself on those Sundays.  It did not register at the time, but there was something about this flash that kept me both present while also yanking me back to another past me, simultaneously. 

And, yes.  Snappy snapperson here got a photo.

As I said, Addie is 9 here.  Her dad is 45 (see figures above).  We'd spent the afternoon in our own ritual, being thankful in our own ways: enjoying outdoors, satisfying curiosity, listening for what is old - what we know, and listening for what is new - what we don't know.

The sound of an amped acoustic guitar with accompanying paint-bucket percussion was something we didn't know.  It was nothing like Mrs. Jansta's organ, but something comforting drew us just the same. We stopped to learn and fortify the cardboard-labeled other bucket declaring a welcoming of support.

Michael will not likely be thrilled with the expression on his face.  But I am.  He was talking to Addie about the music, adding another aspect to what he knew she was already absorbing.  She didn't need to focus on what he was saying, she just dropped into the cottony feel over his shoulder and the sounds around her, the scent of lake air.  You can see that she has let go fully into him - her arms are slack, her fingers so rarely unclenched. She cared only that her foundation, her rock, her mirror of her greatness bore her weight in full while she turned into herself.

And that has always been my defintion of "dad."

I sort of miss you, pop, but mostly I wonder what it would be like if you were here - what you'd be like, who I'd be, if I had had that tweedy foundation to lean into for a few more years.

Michael has an 19 mile training run tomorrow, on the anniversary of the day you died, for a project he's been working on for a few years - he runs marathons for himself, but he's found a way to also make it about fathers and daughters, about families doing the best they can for each other.  You'd like him, pops.  You have a lot in common.

Saturday, August 18, 2012

Number Signs

Michael's training run was 18 miles this morning.  He gets up quietly and we never hear him leave.  When he comes back we are still in our pj's.  He makes plans to paint the stairs and install some garden art his youngest got for her birthday.  He wants to get this done so we can go see some music at an outdoor festival in our community tonight.

His projects complete, he sits in the backyard at this moment, providing musical accompaniment to Addie's frolic in the pool.


If I had run even half that, I'd need the day to recover.  I would not be doing yard work, I would not be making evening plans and kid-entertaining would be less than voluntary.

But I think Addie and her dad must have had a chat about something last night.  Looked like they were deep in an exchange as they took a break from the lakefront festival we wandered through. 




Maybe she encouraged him to aim high. 

"This high?"

"Yeah, dad.  As high as you can."

26.2 4 RTS

Thursday, August 16, 2012

Groove

Will you come back with me today?  To Hopeful Parents?  I spent a good chunk of time there.  Not actually writing, but just being, well, hopeful.

Groove

Now back to it.  I'm on a roll.

PS.  Michael is running the Lakefront Marathon again in October.  And he's carrying Rubinstein-Taybi Syndrome families with him across the finish line again.  Click here to see how:  26.2 for RTS

Wednesday, August 15, 2012

Fear. This. Underdog.

So often you aren't even given credit for intention, for a plan, for setting your own goals.  While we're busy underestimating you and commenting about your lovely hair and your sweet smile, you blindside us with something amazing, leaving us in our patronizing dust as you look back with a half grin, amused by our befuddlement.

You have plans, we can see that.  You have power, we can see that.  We're watching, Addie, can you see that?  Watching faithful of a continued string of clever path-picking.

Happy, happy birthday, my 9 year old.  Anything can happen today.  You taught me that.

Wednesday, July 25, 2012

Daisies in Her Footsteps

My first born, my teacher, my light, my wit, my rock, my clarity, my hope... she turns 13 in 2 hours.  I knew it was coming, but I'm still reeling.  It was not that long ago I was no mother, I knew nothing of it.  And then a free spirit came along to show me the way.

While I know you don't wear the same thing every day, nor do you smoke pot - we can consider those lyrics metaphors for your particular devil-may-care way of moving about in joy and radiance.  You are someone who leaves a wake of hope and clarity behind you wherever you go.  We see daisies in your footsteps, my sweet.

Happy birthday. Happy every day.


Monday, May 21, 2012

Discovery

Piggyback of delays.  My Hopeful Parents post was delayed by a month due to techincal difficulties.  And then I failed to link to it here when it was finally published on the 16th.  Without further ado:

Discovery

(HP changed its platform and thus many links here are broken.  I will work as I can to fix them, though not all posts have been migrated to the new platform yet.  Please forgive the mess.)

Thursday, March 15, 2012

Boss

It's that day each month where you are pulled here to be pushed elsewhere. You know where - Hopeful Parents. And let me tell you, it has been a hopeful, chock-full week for this parent, advocate, person. And still, I bring you back to last month with my tale here.

Boss

Don't be shy, now. Log in and comment on my post at Hopeful Parents. Let me, and those that invited me to write at HP, know that you are reading.

****Hopeful Parents has changed its platform and so all links were broken. I will work through correcting them, but also past the full entries for past posts into FJC. Thanks for your patience.****

Boss


I wonder about my daughter’s road to self-advocacy. I wonder how one directs her own life, chooses and executes a career doing something meaningful and rewarding to her, how one decides how and where she will live, who she will surround herself with, and how she will spend her time – I wonder how this is done amidst alternative communication, alternative cognition and a one-of-a-kind attention span.

I wonder.

But I do not worry.

I hit send on an email informing the rest of her IEP team that Addie would be taking part in, and contributing to, her own IEP from here on out. She’d been present in the past, but did not actively participate. She’s in second grade now and we agreed it’s time she had a say. We weren’t certain how this would work.

Addie’s IEP team is stocked with believers, critical thinkers, measured risk-takers. We have had our moments, but I wouldn’t trade any of those in for where we are today. The IEP meeting was an amiable, productive one, with much of the collaboration among us done in the weeks beforehand. We don’t have the kind of IEPs I hear about that involve contention, bombshells, part 2, and part 3.... A lot went into (and continues to go into) arriving at this positive, very teamy approach, but it’s right where we want it, right where it does the most good for the one whose future we gather to envision and support. I am grateful for that on a daily basis.

Clearly delighted to have a room full of people that work for her (because we all work for her), Addie made the most of her position as boss. After sitting with us at the table for quite a while employing various tricks to ensure we appreciated her presence, she began to move around the room a bit. While her iPad grabbed her attention intermittently, alas her communication device did not.
Though our focus on Addie was sporadically individual and collective during the process, it appeared she had no interjections of her own on the topic of her education for the next year. Internal debate ensued in my head and heart about whether to ask a direct question of her in the hopes of an answer, or to leave it open for her and not limit what she would contribute to the parameters of my question. I willed someone else, preferably Addie herself, to be the one to bring her into the discussion - the discussion about her.

Meanwhile, our analysis and hopeful plans where made official: plans for the next steps with her communication device, strategies for extending the great literacy foundation she’s demonstrated this year, discussion of her powerful inclinations towards science and music, deliberation on how to leverage her absolute devotion to technology in a broader range of academic areas, anticipation of what third grade will hold for her – and what she holds for third grade - as she continues to access the general curriculum in the least restrictive environment for her – the regular classroom.

As business wrapped up and the tone lightened even more, all eyes settled on Addie, as she would have it. With lightening quick judgment, she recognized this as her time. She stood up and stepped backwards, positioning herself right in front of the only door in the room. No one would leave now.

A question was asked or a comment made. I don’t know what and I don’t know by whom. [I asked my husband to read through this and his only comment was that it was me who asked if she had anything to add. I have no recollection of this, so it must remain relegated to brackets.]

Her crescent eyes arch closed as the corners of her mouth pushed her cheeks up. She bent slightly and tightened her fists – this was to be a full body smile. Expertly executing dramatic pause, she held us at bay a few moments longer.

When she was ready to pull the trigger, her right hand shot up to her forehead, pointer resting briefly above the temple before flinging out and forward. It was accompanied by a barely perceptible tip of her head in the same direction. Full body smile unaffected by this concise monologue.

In delighted unison, her IEP team interpreted her American Sign Language; together we gave voice to her declaration. In this statement, she both summarized the entire IEP meeting and threw down the gauntlet for the coming year.

“I’m smart.”

And so I wonder...

But I don’t worry.

Wednesday, March 7, 2012

She's Not Kidding Around

Off to school with her clipboard, pens and pledge forms.



Spread the Word to End the Word

Thursday, February 16, 2012

List



Cracking through a full agenda this week I did, in fact, get one thing done today - my Hopeful Parents post!

Read it here:
List

Check.

Monday, January 16, 2012

Ought To Be



My Hopeful Parents post day fell in a good place this month and I am grateful.

Ought to Be

Wishing you both peace and the power to change something - today and every day after it.

(Full HP post found below)

Ought To Be

"All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality." Martin Luther King, Jr.

It doesn’t take long. As parents of children with differences, we tend to cut to the chase rather swiftly once we’ve understood that we are talking to one who knows this way of living. I ask bolder questions, I lay more of my own truths on the table, eye contact is extended and personal space contracts slightly. While we tell ourselves it’s because this person is a “safe” person, this is one who gets it; I believe there’s a bit more than that. For me there is, anyway. Every single stone must be turned over and examined. I cannot afford to leave any as they are. It would not be fair to her.

And each person I meet with perspective on disability is such a stone.

I ask, I answer, I wonder if this other person holds a clue, a key. Will this other mother put something in words that shed enough light for me to act? With this dad describe something in our lives in such a way that clarifies for me my next move? Do they know someone who knows someone who I should talk to? Will their counter to my view set me on a new, more direct path?

Opportunist, yes. Not void of compassion, understanding or appreciation for mere connection. Not unsympathetic or single-minded or lacking reciprocity. But still. The stone must be turned.

It must be turned because the vision we have formed for her is not one of staid, smiling subsistence. Her character, her strength, confidence and humor, her clear preferences and affinities, her complexity and wit, her superpower of creating the circumstances she wants, all of that and more makes the too common projection for those with intellectual disabilities – a life of adult daycare or superfluous workshop “work” for pennies, possible over-medication, once per week bowling, wide open hours of nothingness, endless receiving, gaping caverns where the act of giving should be, a life peppered with patronizing pats on the hand meant to evoke spiritless smiles – who she is right now makes that life absolutely unimaginable, impossible for her.

She requires more simply because she is human, yes; because to be a full citizen of the planet means to connect to and contribute to the rest of humanity. But I am often surprised when I am faced with description of a young child with differences in ability similar to my daughter’s and I am told with 100% assurance that this child will never be independent to any degree, will never live on her own, will never engage in work that means something to her. What then, I want to ask, will this seedling who is already excused from a life of intention, what will she actually do as an adult, then? What will she do as a child, for that matter, if there is no trajectory, no vision, nothing to prepare for? How are hours of childhood spent if not in laying the foundation for a self-designed future - to the extent possible - through social, ethical, functional and academic experimentation?

What ought this child to be right now, then? As she grows?

My daughter will not “be my constant companion,” as is so often offered as a consolation by strangers when they observe the alternative communication between she and I or coupled with their shocked reaction upon hearing the answer to their inquiry about her age. She will not, in fact, “always be with me.” “May God bless you for your trouble,” they tell me with heads tilted to the side, toppling with the load of generous intention. Alas, they have it backwards. It is not her life that is contingent upon my desire for companionship, but rather my daily occupation that is contingent upon what both my daughters require to ensure they lead the healthy lives they intend to lead as adults. May they be guided in their choices, for I have long since made my own.

Go ahead; ask her what she wants to be when she grows up, as you might any 8 year old. Though it may take her a while to express it and you may lack the ability to understand her response, she has an answer. She knows she ought to be something pretty amazing.

My questions will not stop. Stones will not cease being turned. Trees will not cease being shaken. Both of my children are destined for feats untold, as your children and your neighbor’s children are. An obstacle for my child is an obstacle for your child. An obstacle for your child is an obstacle for mine. “Whatever affects one directly affects all indirectly.”

May each of us see where potential greatness on any scale is being thwarted, may we call oppression what it is. May we speak against it. May we act to end it.

Wishing you a provocative Martin Luther King, Jr. Day.