Not Synonyms

It’s almost rare disease day.  Does that mean anything to you?

It doesn’t actually mean much to me.  I do not connect to the observance of this day.  I understand the point is to raise awareness of uncommon conditions.  And would venture that there is most likely a fundraising component to it and a detailed mission of some kind, though what I see shared on social media is centered only on awareness of rare diseases.   

My daughter has a condition called Rubinstein-Taybi Syndrome, and while it is rare, for her it does not manifest as a disease.  For us, her family, teachers, friends, neighbors -we do not treat it like one, we could not. One would never look at her and see illness.  And while I can see that wider understanding in the medical world should help with diagnostics and possibly treatment, unless you are a medical professional involved in her care, your awareness of RTS doesn’t really do much for Addie.    I’m just not sure how the average joe knowing the symptoms of RTS makes a place for my girl in the world, how it informs a friend, teacher, neighbor, roommate, coworker , boss…about who she is and what she has to offer.  There are a lot of words I’d like to come to your mind when you encounter my daughter – smart, limitless, witty, resilient, confident, generous, hilarious… disease isn’t 10^th on the list or 300^th or even on the list at all.  

 

Disease and disability are not synonyms.  They do not refer to the same things. One can have both, one can have either or one can have neither.   Rubinstein-Taybi syndrome is a disability, not a rare disease.  An RTS awareness campaign is of questionable value for my daughter.

Parents have asked what resources to give their young child’s teachers to inform them about RTS.  This is a natural question, but one I can only respond to with more questions to consider.  Why is it important for a teacher to know the possible manifestations of one part of who the child is before knowing the child himself?  Does an understanding of what could be involved in RTS help or hinder a teacher getting to know that student for who he is as an individual learner? Will knowing what RTS may look like in a range of children help his teacher teach better, will it help raise expectations and assist in envisioning his future as a contributing citizen of many communities throughout his lifetime?  Will it guide the teacher and administrators in setting a tone of academic expectations, dignity, friendship, and daily leaps of faith within the school culture?  Or might it unintentionally limit or even thwart some of these things altogether if it comes before that teacher internally chooses faith in his potential and in his place in her classroom?

We work very hard on ensuring people see our daughter clearly for who she is as an individual without limits.  She is indeed rare – her always-amused demeanor is uncommon, her way of showing her joy and appreciation is incredibly original, the 24/7 interest in science and experimentation is not something that seems typical of all 10 year olds, the way she declines to show incremental steps of progress towards a goal, but rather waits to unveil the entire new talent or skill when it’s complete is something you don’t see every day, her extreme love of dogs but complete lack of desire to actually pet them throws people for a loop almost daily, her memory  and attention to the details that matter to her are unparalleled, she has a one of a kind adoration of water in any form, any vessel, the fact that she has complex feelings and thoughts, but feels no outside pressure to elaborate on these is singular.  Yes, she’s rare.  And these are the things her family and teachers and friends need to know.   We spend nearly every waking moment ensuring others do not filter their view of her through a lens of patronizing pity or general “otherness.”

To see this flurry of activity on social media asking for the general public to consider RTS a disease contradicts some of this work.  It can turn dignity to pity, belonging to merely tolerance. So while I understand our circumstances are not an exact match to others’ and that people don’t make the same choices as we do, we do not remain silent when those choices may negatively impact our own rare children.

<<<<<<whisper>>>>>>>
Pssst. There is no sickness in my home.
No illness. No disease. Disability, yes.

Disease, no.
<<<<<<whisper>>>>>>>

 

(This t-shirt and many other awesome empowering designs is from The Nth Degree )

We Are With You

He ran his 6th marathon, 5th one raising funds for the Special Friends Foundation. To cheer him through the end of his training and across the finish line, Rubinstein-Taybi Syndrome (RTS) families from all over the world participated in the surprise video of cheer for Addie's dad below.

This may be his last marathon.  We'll see - I'll believe it after a few registration deadlines pass, I think.  To end with a flourish, we will also be hosting a fundraiser party locally on Tuesday evening at a popular restaurant.  If you live in town or close and would like to come Tuesday night, drop a comment and we'll figure out how to get you the details.

Until then, enjoy these smiles and cheers from some of our RTS family around the globe.  And may you find in it the power to cross your own personal finish line:

10, Her Way

My girl -

You are a wonder.  You defy expectations every minute of every day.  I have never met anyone so much her own person, not bothering with what others might conclude, just making your own way, in your own way.

Your beauty, strength, confidence, power, intelligence, compassion, humor, love and limitlessness will always be a wonder to those who love you and those who learn to love you.

Happy birthday, my sweet.
~Mom




Wonder by Natalie Merchant:

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

Your Eyes

Child,

Fourteen years ago I first looked into your eyes. I could not yet name what I saw, I didn't know what you saw. Since that time, I catch the light and the heat daily. You see without judgment, you see with love, always looking for connection, for amusement, for what it good. You see the power in others first and you make certain they see it clearly themselves.

In your eyes I do see joy, love, hope, change, power, justice, promise, light, heat.

Happy birthday, sweet.

(Full screen view recommended)

24 Minutes Now, Connections Uncountable Later

 "The more important thing for me is that when I know someone don't want to understand me, I give up. I only want to connect, communicate with people who want to, not with people who don't want to."

What Do Ed Roberts and MLK Have in Common?

Probably quite a bit, but I'll let you do that research.  Both revolutionaries are celebrated this week in our country.

Celebrate Ed Roberts Day today by challenging at least one assumption.  You can start by challenging any disinclination you might have to clicking on this link and reading a short article about Ed Roberts:

http://www.prnewswire.com/news-releases/ed-roberts-legacy-lives-on-in-youths-living-with-disabilities-187901931.html

Both visionaries inform my hopes and plans for my children's futures.  Let me begin to explain (by recycling a post from a year ago this week):

Ought to Be

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.

Stop Me If You've Already Heard This Picture

Rather than yanking the bottom pan out and letting those displaced clank and clatter down as is my careless custom, I remove each pot one by one.  Using both hands to lay each down, my fingers remain on the rim a second, muffling any possible din caused by contact with the counter.  This takes twice as long, but it's worth it.

I consult the full list of ingredients, planning to collect everything needed at once from a given cupboard or shelf, minimizing the number of times the cabinets and refrigerator tap shut.

Chopping is slow and measured, probably more coarse than usual, less uniform.  I turn the heat on as low as it will go without snuffing out.

Quiet.  Slow.  I listen, drawing dinner prep out.

Without any view to it, I attend to what's happening in the next room over.

Sister murmurs to sister, sing-song and soothing, ineffective protests, inspired only by habit and not meant to thwart in the least.   Pillows puff to the floor. I can envision the Younger's disdain inspiring casual, haphazard tosses. We barely register it anymore, much less expect to stop it. Between puffs, Younger emits sighs of satisfaction. With small transition I cannot decipher, abruptly I hear knees and elbows bump and graze the floor; a teasing, laughing tone in whatever Older is saying to Younger.  During short pauses, pealing squeals in a pitch reserved for only these sessions are squeezed from the smaller of the two.  The Older maintains her monologue shifting in modulation extremes herself, just for the entertainment value.

This faster paced, more raucous soundtrack continues, capriciously paced, yet with a cadence familiar and well-worn.  It slows, the sighs come from both, jarringly similar to each other, each communicating the same thing without words.  Drowse, languish, slack, ease.

Brief silence.  Sounds of agreement, consent and unity.  Older resumes the sing-song murmur while Younger responds inaudibly, contributing what she must to sustain.  Maybe an arm around Older, both hands on her cheeks, a constant locked gaze, a sign that says "more." I imagine they are flopped on the carpet right where their wrestling ended, face to face. I don't know. It's between them.  Not about me.  I am stealing right now and I know it.  They will forgive as they always do.

The wooden spatula that pushes the vegetables around the pan, disconnected from my hand that holds it, drops suddenly.  I need to go look at something.

A picture.  From a few years ago.  Halloween, I'm certain of it.  Yes, I'll find it in "October, 2010."

A photograph of what I can hear from the other room.

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.

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.

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

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.

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.

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.

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

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

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.

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.

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.)

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.

She's Not Kidding Around

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



Spread the Word to End the Word