tag:blogger.com,1999:blog-2117980076451145362024-03-13T23:15:08.521-07:00Farmer John Cheese and Other JoyUnknownnoreply@blogger.comBlogger182125tag:blogger.com,1999:blog-211798007645114536.post-24216450757684652472014-02-16T09:27:00.002-08:002014-02-16T09:30:45.097-08:00Not Synonyms <br />
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<span style="font-family: Calibri;">It’s almost rare disease day. <span style="mso-spacerun: yes;"> </span>Does that mean anything to you?<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It doesn’t actually mean much to me. <span style="mso-spacerun: yes;"> </span>I do not connect to the
observance of this day. <span style="mso-spacerun: yes;"> </span>I understand the
point is to raise awareness of uncommon conditions.<span style="mso-spacerun: yes;"> </span>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 <i style="mso-bidi-font-style: normal;">awareness</i> of rare diseases. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">My daughter has a condition called Rubinstein-Taybi
Syndrome, and while it is rare, for her it does not manifest as a disease. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>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<sup><span style="font-size: x-small;">th</span></sup>
on the list or 300<sup><span style="font-size: x-small;">th</span></sup> or even on the list at all. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span></span><br />
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<span style="font-family: Calibri;">Disease and disability are not synonyms.<span style="mso-spacerun: yes;"> </span>They do not refer to the same things. One can
have both, one can have either or one can have neither. <span style="mso-spacerun: yes;"> </span>Rubinstein-Taybi syndrome is a disability, not
a rare disease.<span style="mso-spacerun: yes;"> </span>An RTS awareness
campaign is of questionable value for my daughter.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Parents have asked what resources to give their young
child’s teachers to inform them about RTS.<span style="mso-spacerun: yes;">
</span>This is a natural question, but one I can only respond to with more questions
to consider. <span style="mso-spacerun: yes;"> </span>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?<span style="mso-spacerun: yes;"> </span>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?<span style="mso-spacerun: yes;"> </span>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?<span style="mso-spacerun: yes;">
</span>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?<o:p></o:p></span></div>
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<span style="font-family: Calibri;">We work very hard on ensuring people see our daughter clearly
for who she is as an individual without limits.<span style="mso-spacerun: yes;">
</span>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<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Yes, she’s rare.<span style="mso-spacerun: yes;"> </span>And these are the things her family and
teachers and friends need to know.<span style="mso-spacerun: yes;"> </span>We
spend nearly every waking moment ensuring others do not filter their view of
her through a lens of patronizing pity or general “otherness.”<o:p></o:p></span></div>
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<span style="font-family: Calibri;">To see this flurry of
activity on social media asking for the general public to consider RTS a
disease contradicts some of this work.<span style="mso-spacerun: yes;"> </span>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.</span></div>
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<span style="font-family: Calibri;"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"><<<<<<whisper<whispers>>>>>>>><br />
Pssst. There is no sickness in my home. <br />
No illness. No disease. Disability, yes.<br />
<br />
Disease, no.<br />
<<<<<<whisper<whispers>>>>>>>></whispers></whispers></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib0D5OPzJFEUg4MvdK-kH78mbP5SiKqD-eGSF6NwJGnu_GpYwiSNHpOPBmb0mN7c1HeeVPPcF3Of5XAXHzDjql25m84FmCvbe2o8Lh8hQt9ZW9JxRzVNvneUf2xIS_afitN-rJDaKdXOE/s1600/pisslg.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib0D5OPzJFEUg4MvdK-kH78mbP5SiKqD-eGSF6NwJGnu_GpYwiSNHpOPBmb0mN7c1HeeVPPcF3Of5XAXHzDjql25m84FmCvbe2o8Lh8hQt9ZW9JxRzVNvneUf2xIS_afitN-rJDaKdXOE/s1600/pisslg.jpg" height="320" width="307" /></a></div>
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<span style="font-family: Calibri;"><span lang="EN" style="color: #333333; mso-ansi-language: EN;"></span><o:p></o:p></span> </div>
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<span style="font-family: Calibri;"><o:p>(This t-shirt and many other awesome empowering designs is from <a href="http://www.thenthdegree.com/default.asp" target="_blank">The Nth Degree</a> )</o:p></span></div>
Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-211798007645114536.post-40712967291342086042013-10-12T15:19:00.001-07:002013-10-12T15:21:39.610-07:00We Are With YouHe ran his 6th marathon, 5th one <a href="http://www.firstgiving.com/fundraiser/michael-ellis-2/26forrts" target="_blank">raising funds</a> for the <a href="http://specialfriends.org/" target="_blank">Special Friends Foundation</a>. 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.<br />
<br />
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.<br />
<br />
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:<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/ZzjDgegOw1Y?rel=0" width="420"></iframe>Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-211798007645114536.post-81709486558412494652013-08-15T10:05:00.001-07:002013-08-15T10:05:17.462-07:0010, Her WayMy girl - <br />
<br />
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.<br />
<br />
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.<br />
<br />
Happy birthday, my sweet.<br />
~Mom<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/lQ6nu65NXi0" width="420"></iframe><br />
<br />
Wonder by Natalie Merchant: <br />
<br />
Doctors have come from distant cities<br /> Just to see me<br /> Stand over my bed<br /> Disbelieving what they're seeing <br /><br /> They say I must be one of the wonders<br /> Of god's own creation<br /> And as far as they can see they can offer<br /> No explanation <br /><br /> Newspapers ask intimate questions<br /> Want confessions<br /> They reach into my head<br /> To steal the glory of my story <br /><br /> They say I must be one of the wonders<br /> Of god's own creation<br /> And as far as they can see they can offer<br /> No explanation <br /><br /> O, I believe<br /> Fate smiled and destiny<br /> Laughed as she came to my cradle<br /> Know this child will be able<br /> Laughed as my body she lifted<br /> Know this child will be gifted<br /> With love, with patience and with faith<br /> She'll make her way <br />
<br />
People see me<br /> I'm a challenge to your balance<br /> I'm over your heads<br /> How I confound you and astound you<br /> To know I must be one of the wonders<br /> Of god's own creation<br /> And as far as you can see you can offer me<br /> No explanation <br /><br /> O, I believe<br /> Fate smiled and destiny<br /> Laughed as she came to my cradle<br /> Know this child will be able<br /> Laughed as she came to my mother<br /> Know this child will not suffer<br /> Laughed as my body she lifted<br /> Know this child will be gifted<br /> With love, with patience and with faith<br /> She'll make her wayUnknownnoreply@blogger.com7tag:blogger.com,1999:blog-211798007645114536.post-48594397435402836712013-08-02T06:11:00.002-07:002013-08-02T06:20:42.854-07:00Your EyesChild,
<br />
<br />
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.
<br />
<br />
In your eyes I do see joy, love, hope, change, power, justice, promise, light, heat.<br />
<br />
Happy birthday, sweet.<br />
<br />
(Full screen view recommended)<br />
<iframe allowfullscreen="" frameborder="0" height="344" src="//www.youtube.com/embed/KgH6RCEQLi8" width="459"></iframe><br />
<br />
<br />
<br />
<i></i><br />Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-211798007645114536.post-77993951538940182682013-01-27T08:30:00.002-08:002013-01-27T08:30:22.738-08:0024 Minutes Now, Connections Uncountable Later<span id=".reactRoot[79].[1][2][1]{comment392394350850207_47783423}.0.[1].0.[1].0.[0].[0][1]"> </span><span data-ft="{"tn":"K"}" id=".reactRoot[79].[1][2][1]{comment392394350850207_47783423}.0.[1].0.[1].0.[0].[0][2]"><span class="UFICommentBody" id=".reactRoot[79].[1][2][1]{comment392394350850207_47783423}.0.[1].0.[1].0.[0].[0][2].0"><span id=".reactRoot[79].[1][2][1]{comment392394350850207_47783423}.0.[1].0.[1].0.[0].[0][2].0.[0]">"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."</span></span></span><br />
<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span></span></span></span><br />
<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span></span></span></span><br />
<span data-ft="{"tn":"K"}"><span class="UFICommentBody"><span></span></span></span>
<iframe width="560" height="315" src="http://www.youtube.com/embed/PaRvBj6p5V0" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-211798007645114536.post-91933036713143547772013-01-23T08:29:00.001-08:002013-01-23T08:29:39.060-08:00What 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.<br />
<br />
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:<br />
<br />
<a href="http://www.prnewswire.com/news-releases/ed-roberts-legacy-lives-on-in-youths-living-with-disabilities-187901931.html">http://www.prnewswire.com/news-releases/ed-roberts-legacy-lives-on-in-youths-living-with-disabilities-187901931.html</a><br />
<br />
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):<br />
<br />
<a href="http://farmerjohncheeseandotherjoy.blogspot.com/2012/01/ought-to-be.html" target="_blank">Ought to Be</a><br />
<br />
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.<br />
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-301846789249733802013-01-11T19:58:00.000-08:002013-01-11T19:58:48.796-08:00Stop Me If You've Already Heard This PictureRather 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Quiet. Slow. I listen, drawing dinner prep out.<br />
<br />
Without any view to it, I attend to what's happening in the next room over.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
A picture. From a few years ago. Halloween, I'm certain of it. Yes, I'll find it in "October, 2010."<br />
<br />
<br />
<br />
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<br />
A photograph of what I can hear from the other room.<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-14950578029008092942012-11-23T08:53:00.001-08:002012-11-23T17:22:55.633-08:00Not My FoeDay 2: <a href="http://www.runnersworld.com/cold-weather-running/2012-holiday-running-streak" target="_blank">Holiday Running Streak</a><br />
<br />
31 degrees, high winds, wind chill in the teens<br />
<br />
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.<br />
<br />
Before long, the wind switched and churned frantically, surprising me with its swift slaps from unanticipated directions.<br />
<br />
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.<br />
<br />
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. <br />
<br />
Once my attention was absolute and my stiff knees slackened, poised for surrender, Wind whispered in contradictory baleful howls, <br />
<br />
"I am not your enemy."<br />
<br />
I am not your enemy.<br />
<br />
We finished in constant company.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-76278120411114291042012-10-11T06:58:00.001-07:002012-10-11T06:59:06.853-07:00Not SquanderI 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.<br />
<br />
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. <br />
<br />
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."<br />
<br />
Except for one thing. One nagging short line articulated differently in every journal article and website.
<br />
<br />
The question of a possible shortened lifespan.
<br />
<br />
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.
<br />
<br />
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.<br />
<br />
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.<br />
<br />
Today I got 3 of them.<br />
<br />
<br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-36532166519846579072012-10-05T08:37:00.001-07:002012-10-05T08:48:53.301-07:00The 2 Biggest ReasonsMichael 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...<br />
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Have a look back at his year's birthday cards I made for them (yep, a rerun):<br />
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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.<br />
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<a href="https://www.firstgiving.com/fundraiser/michael-ellis-2/rts" target="_blank">26.2forRTS</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-8713894723172296602012-09-30T20:45:00.001-07:002013-08-30T17:53:27.816-07:00In The Time It Takes<div class="separator" style="clear: both; text-align: center;">
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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. <br />
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So we get less time, less focus.<br />
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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.<br />
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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.<br />
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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. <br />
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Rather, <em>they</em> 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.<br />
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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.<br />
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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 <a href="https://www.firstgiving.com/fundraiser/michael-ellis-2/26forRTS" target="_blank">runs with a purpose</a> for another training season. There will likely even be a bit more jumping for joy.<br />
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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: 26.2forRTS<a href="https://www.firstgiving.com/fundraiser/michael-ellis-2/26forRTS" target="_blank">26.2forRTS</a>.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-42779248429816570622012-09-05T12:01:00.002-07:002012-09-05T12:09:04.323-07:00This Pleases the Cockroaches I Live With Greatly<em>Karen - </em><br />
<em></em><br />
<em>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.</em><br />
<em></em><br />
<em>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. </em><em>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). </em><br />
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<em>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.</em><br />
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<em>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.</em><br />
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<em>'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.</em><br />
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<em>And yourself?</em><br />
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<em>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...</em><br />
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<em>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.</em><br />
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<em>'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...</em><br />
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<em>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.</em><br />
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<em>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.</em><br />
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<em>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.</em><br />
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<em>I miss you. You write a mean letter. More, more.</em><br />
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<em>Love and Peace,</em><br />
<em>Shin Tai Rae</em><br />
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<em>_________________________________________________________________________________</em><br />
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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-90635622385826730292012-08-31T21:52:00.000-07:002012-09-01T06:02:55.273-07:00ShoulderThe 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.<br />
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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. <br />
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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. <br />
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What I do recall is this.<br />
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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. <br />
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My dad - it's hard to say <em>my</em> dad because he was <em>our</em> 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 <em>was</em> 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. <br />
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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.<br />
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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. <br />
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And, yes. Snappy snapperson here got a photo.<br />
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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.<br />
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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.<br />
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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.<br />
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And that has always been my defintion of "dad."<br />
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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.<br />
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Michael has an 19 mile training run tomorrow, on the anniversary of the day you died, for a <a href="http://www.firstgiving.com/fundraiser/michael-ellis-2/rts" target="_blank">project</a> 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.<br />
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-3020253749272456902012-08-18T13:17:00.000-07:002012-08-18T13:35:13.885-07:00Number SignsMichael'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.<br />
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His projects complete, he sits in the backyard at this moment, providing musical accompaniment to Addie's frolic in the pool.<br />
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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.<br />
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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. <br />
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<br />
Maybe she encouraged him to aim high. <br />
<br />
"This high?"<br />
<br />
"Yeah, dad. As high as you can."<br />
<br />
<a href="http://www.firstgiving.com/fundraiser/michael-ellis-2/rts" target="_blank">26.2 4 RTS</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-12148152021915848052012-08-16T20:59:00.001-07:002012-08-16T21:03:11.464-07:00GrooveWill you come back with me today? To <a href="http://www.hopefulparents.org/2012/08/groove.html" target="_blank">Hopeful Parents</a>? I spent a good chunk of time there. Not actually writing, but just being, well, hopeful.<br />
<br />
<a href="http://www.hopefulparents.org/2012/08/groove.html" target="_blank">Groove</a><br />
<br />
Now back to it. I'm on a roll.<br />
<br />
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: <a href="http://www.firstgiving.com/fundraiser/michael-ellis-2/rts" target="_blank">26.2 for RTS</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-41425047249696643862012-08-15T08:48:00.000-07:002012-08-15T08:48:06.860-07:00Fear. 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.<br />
<br />
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.<br />
<br />
Happy, happy birthday, my 9 year old. <em>Anything</em> can happen today. You taught me that.<br />
<br />
<iframe width="480" height="360" src="http://www.youtube.com/embed/I9vUrQ3VstY?rel=0" frameborder="0" allowfullscreen></iframe>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-15139435631556067512012-07-25T22:06:00.001-07:002012-07-25T22:12:12.718-07:00Daisies in Her FootstepsMy 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.<br />
<br />
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.<br />
<br />
Happy birthday. Happy <em>every</em> day.<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="360" src="http://www.youtube.com/embed/P9HBGgGU-YE?rel=0" width="480"></iframe>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-66938207134755799692012-05-21T17:35:00.000-07:002012-05-21T17:35:11.095-07:00DiscoveryPiggyback of delays. My <a href="http://www.hopefulparents.org/2012/04/discovery.html" target="_blank">Hopeful Parents</a> 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:<br />
<br />
<a href="http://www.hopefulparents.org/2012/04/discovery.html" target="_blank">Discovery</a><br />
<br />
(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.)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-24919315837141390562012-03-15T21:10:00.002-07:002012-06-13T14:46:20.720-07:00BossIt's that day each month where you are pulled here to be pushed elsewhere. You know where - <a href="http://www.hopefulparents.org/blog/2012/3/16/boss.html">Hopeful Parents</a>. 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.<br />
<br />
<a href="http://www.hopefulparents.org/search?q=boss" target="_blank">Boss</a><br />
<br />
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.<br />
<br />
****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.****
<br />
<br />
<h3 class="post-title entry-title" itemprop="name">
Boss </h3>
<br />
<div class="post-body entry-content" id="post-body-2256760130479277944" itemprop="articleBody">
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.<br />
<br />
I wonder.<br />
<br />
But I do not worry.<br />
<br />
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.<br />
<br />
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 <em>teamy</em> 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.<br />
<br />
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.<br />
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 <em>her</em>.<br />
<br />
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 <em>for her </em>– the regular classroom.<br />
<br />
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.<br />
<br />
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.]<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
“I’m smart.”<br />
<br />
And so I wonder...<br />
<br />
But I don’t worry.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-55520335377567483842012-03-07T07:26:00.001-08:002012-03-07T07:30:54.836-08:00She's Not Kidding AroundOff to school with her clipboard, pens and pledge forms.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ84uqYERwOmVWS_PEuvwfWRUJSV2q9Yw8Vs8imJSR4wtyUB3bTP4mj9X7iA47zwzf8Bqk2AQgeM9qFgRLsl1Bv-FSvX46maTZSuuazDurtHnSnr7G6opLx24UXLUcxUAGXkeQx25XSmE/s1600/IMG_5035.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZ84uqYERwOmVWS_PEuvwfWRUJSV2q9Yw8Vs8imJSR4wtyUB3bTP4mj9X7iA47zwzf8Bqk2AQgeM9qFgRLsl1Bv-FSvX46maTZSuuazDurtHnSnr7G6opLx24UXLUcxUAGXkeQx25XSmE/s400/IMG_5035.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5717177317711753586" /></a><br /><br /><a href="http://www.r-word.org/Default.aspx">Spread the Word to End the Word</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-24022784304546626592012-02-16T18:50:00.000-08:002012-02-16T19:30:09.142-08:00List<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghxJW3i5P8ZHBYr04Fnv0Z5StNWIwb8tPraa4MffwNcM_OqokTm0wO6NeVd8DVyJgmIOZKSDfjkU-7yEFFJmx5OFHfy6QWqHEuNbN7ARpW4blHXLp13w7-PfwfcTeHFoK4x6-UT96-row/s1600/to-do-list.jpeg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 350px; height: 374px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghxJW3i5P8ZHBYr04Fnv0Z5StNWIwb8tPraa4MffwNcM_OqokTm0wO6NeVd8DVyJgmIOZKSDfjkU-7yEFFJmx5OFHfy6QWqHEuNbN7ARpW4blHXLp13w7-PfwfcTeHFoK4x6-UT96-row/s400/to-do-list.jpeg" border="0" alt=""id="BLOGGER_PHOTO_ID_5709931976432234962" /></a><br /><br />Cracking through a full agenda this week I did, in fact, get one thing done today - my <a href="http://www.hopefulparents.org/blog/2012/2/16/list.html">Hopeful Parents</a> post!<br /><br />Read it here:<br /><a href="http://www.hopefulparents.org/blog/2012/2/16/list.html">List</a><br /><br />Check.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-211798007645114536.post-55330448312855444612012-01-16T06:29:00.001-08:002013-01-15T11:40:01.189-08:00Ought To Be<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg80k_3Ko-qOJqaVbgFJ3xhF6vJicYOUbLROT_hUNeanA5YDBjwveHYRKO_7yTwJ9mhTXA-csFa4mR2pCAItqjkMrl_r-5CYvVhdtdeR4QtXv3BX8NrVEtvkkLX_PJ-0ktTw77bsUqQlrQ/s1600/1263582802924975293martin-luther-king-jr.png"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5698237103149127474" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg80k_3Ko-qOJqaVbgFJ3xhF6vJicYOUbLROT_hUNeanA5YDBjwveHYRKO_7yTwJ9mhTXA-csFa4mR2pCAItqjkMrl_r-5CYvVhdtdeR4QtXv3BX8NrVEtvkkLX_PJ-0ktTw77bsUqQlrQ/s400/1263582802924975293martin-luther-king-jr.png" style="cursor: pointer; display: block; height: 325px; margin: 0px auto 10px; text-align: center; width: 260px;" /></a><br />
<br />
My <a href="http://www.hopefulparents.org/2012/01/ought-to-be_16.html" target="_blank">Hopeful Parents</a> post day fell in a good place this month and I am grateful.<br />
<br />
<a href="http://www.hopefulparents.org/2012/01/ought-to-be_16.html" target="_blank">Ought to Be</a><br />
<br />
Wishing you both peace and the power to change something - today and every day after it.<br />
<br />
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(Full HP post found below)<br />
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<h2 class="date-header">
Ought To Be </h2>
<div class="date-posts">
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<div class="post-body entry-content" id="post-body-8816124348723492804" itemprop="articleBody">
<em>"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.</em><br />
<br />
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.<br />
<br />
And each person I meet with perspective on disability is such a stone.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 <em>this</em> 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 <em>do</em> 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?<br />
<br />
What ought this child to be right now, then? As she grows?<br />
<br />
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
<em>they</em> be guided in their choices, for I have long since made my
own. <br />
<br />
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.<br />
<br />
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.”<br />
<br />
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.<br />
<br />
Wishing you a provocative Martin Luther King, Jr. Day.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-933826947317739542011-12-17T07:16:00.000-08:002012-05-04T12:05:19.426-07:00Factory AxisI was up late, late, late last night, at <a href="http://www.hopefulparents.org/search?q=factory+axis" target="_blank">Hopeful Parents</a>, decorating a page for you all. Sadly, I hit publish at 12:01 and missed my scheduled date of the 16th.<br />
<br />
Come back to my Christmas Eve in 1991 at:<br />
<br />
<a href="http://www.hopefulparents.org/search?q=factory+axis" target="_blank">Factory Axis</a><br />
<br />
Peace, joy and new adventures to you for this holiday season and into the new year.<br />
<br />
TH-E (aka: FJC, Insideout510)<br />
<br />
<strong>Factory Axis</strong><br />
<br />
The Vespa swayed and popped as I gripped the seat under me. My hands were
wet from rain and mud splashing back up. I didn’t articulate the question in my
mind, but it was there: what the hell was I doing on a motorized scooter on
Christmas Eve on country “roads” in Taiwan? As my wet hands slipped one too
many times, I realized I’d have to hold on to the driver. I reached around Tom
and gripped the edges of the pockets on his leather jacket. The beds under my
nails stung white hot from pinching tight in such damp cold.<br />
<br />
I didn’t know much about Tom. He was of Irish heritage and called Chicago
home. I’m not even certain how we met, beyond realizing that two Americans, and
Midwestern Americans at that, in the northern part of the island known as the
Republic of China, Taiwan, we were bound to meet eventually. Nor could I
conjure up much of a story as to why he invited me on this Christmas Eve junket,
or why I accepted the invitation without thought. I’m sure we were both just
trying to make the best of it. As two people thousands of miles from home on
our own by choice, I think we were both inclined more towards <em>yes</em> than
towards <em>no</em> by nature.<br />
<br />
As we bounced through the rough roads and puddles of unidentified liquid, I
planned how I would not like it when we got there. It could not possibly be
good. With each jerk of my neck, I staged my disgruntled judgment of our
destination. I said yes, but it still felt somewhat under duress. It’s a
church, after all, and I haven’t been very churchy since I exited my
family-mandated 12 years of Catholic school years back. And while I’d gotten to
know the Taiwanese during my year and a half as a teacher there, the language
and culture to some extent - this would be a Filipino church we were headed
towards, per Tom’s invitation. The entire mass would be in Tagalog. I knew I
would not understand a thing. I anticipated thinking of my family, of the 7,383
miles I was away from the only kind of Christmas I knew. It was, at least, a
Christian church and would be closest to the Christmas Eve masses I’d observed
at home - a far stretch from the strange pageantry of Christmas celebrations
happening among the Taiwanese, who for the most part do not concern themselves
with acknowledging the origin of the holiday as the foundation of
Christianity. <br />
<br />
In my mind, I was not home and so it could not <em>really</em> be
Christmas.<br />
<br />
We arrived at the modest chapel in the middle of bleak fields and marshes
barely made out in the darkness. Tom parked the Vespa next to a short row of
others, not a single car to be found. Because of this sparse array of
transport, I anticipated a drearily scant congregation. Tom noted the
skepticism on my face and informed me they do not have cars and only the very
wealthy have scooters. Most would have walked from their “homes,” tonight,
through those fields and marshes he pointed to. I felt the word “homes” in
quotations in the way he said it, but we talked little, so I did not
question.<br />
<br />
He pulled the door open to a din and a light that have not been matched for
me in the 20 years since. The ornate pews were packed. The aqua colored paint on
the walls cracked, but the alter and carved stations of the cross were
pristine. No single body filling the pews was still for more than a moment. The
band at the front warmed up, but it seemed movement was choreographed to their
haphazard sounds even still. Everywhere smiles, handshakes, pats on the back,
hands held, hugs prolonged – a joining of person to person, person to next
person so graceful and constant. The level of genuine affection lead me to
guess it might be one large extended family. Except that there was not a single
child in the church. The entire congregation was made up of adults ranging in
age from 25 to about 55.<br />
<br />
As Tom and I found our spot, the band opened the ceremony with nothing I’d
ever heard in all the Christmas Eves I’ve celebrated. It appeared to be a sort
of folk/rock/bluegrass approach to the traditional Christmas carols I knew, but
in a language I’d never heard. The musicians were so earnest and so enveloped
by their craft, that for brief moments, right at this opening song, I’d
forgotten about my quest to disapprove of this experience.<br />
<br />
The spoken rites of mass ensued and in its subdued progression, I was
released to mourn what I missed. I missed my family, my own church from
childhood – if not from faith, then from a cultural adherence. I missed my
family and the thought of the sugary buffet of sweets that certain members of
the family would be laying out as the rest of us were at mass. I missed the
firm tweed shoulder of my dad’s suit jacket against my cheek as I leaned,
inhaling the incense from our pew as I dreamed of the chaotic cadence of a
holiday at home with my mom, my dad and my 9 brothers and sisters.<br />
<br />
Tom’s pinky showed up in my view as his hand waved hesitantly in my range of
vision. I was weeping and I did not know it. Tom and I did not know each other
well and perhaps we would be friends one day, but we weren’t yet. What was he to
do with this sobbing girl that he’d brought into this community that he
understood, but that she did not? He waved to inform me that he was my host, my
connection between where we were and me, and that I was audibly crying, and that
that was not very cool. <br />
<br />
The band began again. In an effort to rally, I leaned a little closer to Tom
and whisper-asked about his family. I came to find it was also large. I
thought about how much my sisters would enjoy the music, my big sisters who
formed all of my tastes in music, literature, people… in everything. If only
they could be here. I know they would support a love for it.<br />
<br />
At some point in this mass that was surprisingly predictable in its order,
unpredictable in its spirit, I stopped thinking about the Christmases that
<em>were</em>, and thought about the Christmas that <em>is</em>. <br />
<br />
As the observance ended and we milled out, Tom introduced me to a few that he
knew. We were of note from the start as the only non-Filipino participants,
though it seemed to make little difference. As Tom’s Mandarin was better than
mine, the common language between us and our hosts, he made arrangements I knew
nothing about.<br />
<br />
We got back on the Vespa and continued on through the marshy dark, following
others with scooters, leaving many to walk the same roads behind us. The only
explanation I got from Tom, which I apparently accepted was “We are
invited.”<br />
<br />
Eventually we arrived at an industrial building. We entered among the
smaller group who rode with us through a back door. We walked up two flights of
stairs past unwieldy machinery that confirmed my suspicion that the building was
a factory. Up on the 3<sup><span style="font-size: x-small;">rd</span></sup> floor there was a subsection built off with
walls and a ceiling, like a little loft in a huge open warehouse, a hive in a
tree. One of the young men, about as tall as I am, turned to me as he opened
the door and said in English, “Home.”<br />
<br />
Burners were warmed up, chairs were unfolded, gifts were procured, stories
were told. The walkers arrived and left their muddy shoes at the door. In a
stilted, broken progression between what Tom already knew and the stories our
hosts now told us, I came to understand certain things.<br />
<br />
The group of 20 or more that lived/worked in this factory all had families at
home in the Philippines. Many were highly certified and educated, but could not
make a decent living in their home country. They left their families there and
came to Taiwan to work and live in the factories to send money home. Some were
the fathers, some the mothers, but all had people that they loved and supported
700 miles away. They lived on cots and electric burners here, fueled by 10 hour
factory work days and envelopes home filled with more money than they could make
if they lived with the beloveds they made this sacrafice for. A few talked
about how they came to the decision on who would leave to work here, mom or
dad.<br />
<br />
And yet they smiled and celebrated and welcomed us. The honor of guests was
palpable as guitars were unveiled, music played, gifts appeared, food offered.
I sat on the edge of a cot as a woman so proudly showed me the photos of her
small children on the wall behind us, told me in her best English that she
<em>have enough go home 1 year and go back be pediatrician and mom</em>.<br />
<br />
The message came across strongly that they believed they had something in
common with Tom and I as English teachers from America on a visa, away from our
homes. But the truth was that I got paid 3 times as much as they did for half
as many hours and I did not have a family to support. I lived in my own room
in the nice house of a Taiwanese family. I was young and foolish and was there
by choice, not obligation. They knew this. I knew this.<br />
<br />
But they didn’t put it between us, they chose to connect based on the few
things we did share. I’ve never been given a gift as generous, as meaningful,
as useful.<br />
<br />
We stayed late. We drank whisky. I laughed out of contagion, for the
gratefulness and celebration in that factory/makeshift home was not less than,
not equal to, but greater than what I understood Christmas Eve to mean.<br />
<br />
I don’t know what happened to Tom. I know he was a friend for as long as I
was there. I still have some cassette tapes he made for me. My kids will never
meet him or my gracious hosts from Christmas Eve in 1991. But a crucial part of
who I am as a parent, who I am as a hopeful parent who was, at one time, certain
she would not be game for this disability parenting ride, comes from that swampy
factory Christmas Eve.<br />
<br />
Peace and joy to you, no matter your circumstances.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-63264717330662151082011-12-10T13:25:00.000-08:002011-12-10T14:07:53.637-08:0050,000 and CountingI celebrate surpassing 50,000 hits with, of course, a repost! While I did not receive this particular piece of mail this year, I think of it every time part of who my child is is twisted into becoming someone else's feel-good charitable act of selflessness - more often this time of year. I appreciate acts of generosity and kindness and the intention behind them. But we have two happy, healthy children living full lives in our home. There is real need out there. One needn't search too long to identify and address it.<br /><br />Readers, thank you for your vists and revisits to Farmer John Cheese. We love having you here, 50,000 times and beyond.<br /><br />Jarring Mail, from October of 2009:<br /><br />I opened a seemingly innocuous piece of mail today and was smacked in the face by it. No, it was not an evaluation or assessment implying my clever 6 year old is really only a toddler developmentally. Nope, wasn't results from medical tests that portend painful procedures in her future. Wasn't even a copy of an IEP written by someone with an entirely different interpretation of every decision made during the meeting. None of that.<br /><br />It was an offer. A gift. A helping hand. A helping hand that nudged me away from all points of reference I currently hold with regards to my daughter's place in the world.<br /><br />It was a note from a respite agency we are not currently active with as we have no respite services at this time. But we are still "on the list" and so we get mail and newsletters.<br /><br />Filled with graphics, fancy and fun fonts, and lots of exclamation points, this mail had 2 parts. Page one was to inform families to call the agency and let them know which kinds of books our child with special needs prefers. At some point after that, we're to come to the agency office to pick up books donated by Barnes and Noble.<br /><br />The second page asked us to fill out a form that would be posted at local corporations leading up to the holidays. The employees of these corporations would select a form (based on arbitrary things like name, maybe - age, gift ideas) and shop for one item listed on it. We did this where I worked - we called it the Giving Tree. My assumption was that we were giving to those that could not otherwise obtain these gifts. I thought we were fulfilling a need.<br /><br />But I am confused. My children receive books and toys for the holidays already. We are blessed to not count this among our worries, however modest our giving may be. We have shelves of books, library books from school and from our community library. We have toys and a swing set for our girls. We have enough to eat and can pay our mortgage. To paraphrase, we have enough so that we do not want, and we are able to give others.<br /><br />As I'm reading through this act of generosity, of charity, I am not grateful. I don't feel prideful either, though it may sound like it. I am dumbfounded that my child is seen as unfortunate and in need. There are children that are, but my child's disability does not automatically put her in such a category.<br /><br />When I am in the world, I don't see the pity anymore unless it is laser focused on us and articulated as such. I take Addie to school and the dynamic that would make her less fortunate than the other kids, in need of toys, books, food, attention - whatever, is just not visible to me. When we are in public, I don't see cocked heads wishing us mercy, I don't feel a hand patting mine, offering sympathy. I know I am somewhat selective about what I choose to internalize, but those things must be more present than I realize.<br /><br />If Addie showed up at one of these corporations that will hang the gift tags for employees to grab and shop for a child with a disability, if she bobbed her blond head through the cubicles, if she waddled through, making her happy noises, operating her communication device to find out where the candy jar is (all workplaces have candy, kids know this), if she fixed her eyes on a department director and flung her healthy, squinting smile with a side dish of chuckle, would these people feel good about where their gifts of toys went? Would they feel like they made an impact in an otherwise toy-free, dreary life? Would they feel their part in the lives of those with disabilities had been played, that they can tally that up and cross it off the to-do's?<br /><br />Probably not. I hope. Again, I don't think my bemusement comes from pride or lack of gratitude. The gesture is a beautiful one and certainly needed in these times all over. But I am confused that my child is automatically a charity target simply because she has a more complicated medical history than many kids, because she thinks, moves, talks differently than many. It feels somehow redundant to me, superfluous, to give my child, who is capable of making her own contributions to those in need, gifts of material things.<br /><br />This mail reminded me of the reality that often our kids are seen only as receivers, not as givers. Whether this involves pity or a desire to "help" or not is an individual thing. I have had other parents at my older daughter's school comment on how the needs of the kids in special ed negatively impact what their own typical child gets at school, sarcastic comments about <em><em>these kinds of kids</em></em> being the "stars of the whole school." If my child is seen as a receiver or someone held up as more deserving than other kids, the gifts she really has to offer herself cannot be recognized, cannot be witnessed, cannot do the work of healing and bettering she intends for her talents to do, as everyone intends their contributions to society to do.<br /><br />The form from the respite agency asks for a couple options of gifts under 25$, from which the corporate worker will choose 1, to be distributed unwrapped to the parent (so that the parent may use them as the gifts from themselves, if desired) in December.<br /><br />I know that there is mad desire to give out there, to share - to give effectively, to make something better for someone. It's where this idea of giving toys to Addie and others with disabilities came from, from kindness and compassion, from wanting to lead a life of purpose. And I deeply appreciate it. But I offer an alternative gift tag wish list to ensure the gifts have definite impact on Addie.<br /><br />Respite Agency, can you post it at ALL corporations, community buildings, schools, retail establishments, parks, entertainment venues..., please? All options listed are free and low to moderate effort. They will not be used as my gifts to Addie, but must come directly from the giver. By giving any of these to Addie, they are automatically given to others and come back to the giver in kind. She does not need these gifts by December, but throughout her entire life, any place, any time. All places. All times. <br />_________________________________________________________________________________<br /><strong><strong>Name:</strong></strong> Addie<br /><br /><strong><strong>Age:</strong></strong> 6<br /><br /><strong><strong>Gift idea 1:</strong></strong> See <em><em>me</em></em>. Don't see me only in terms of my disability. Witness me for who I am and decide whether or not my differences are a tragedy based on how I carry them, how I use them, how important or unimportant they seem to be to me in what I expect from the world and what I have to offer.<br /><br /><strong><strong>Gift idea 2:</strong></strong> Hear me. I communicate constantly. I understand that you need to get used to how I do so. I will be patient with you. Try to hear the music I move to. You might find it more similar to your own than different.<br /><br /><strong><strong>Gift idea 3:</strong></strong> Let me help you. I can. I am capable of filling a need you may have, whether it's a social one, a practical one, a paid one. I am 6 now, but I intend to do work that I can feel good about when I'm a grown up, to live as independently as possible. If you see me now, if you hear me now, witness my talents, you might just want to hire me, be my roommate, hang out with me...later.<br /><br />Thanks in advance for your gifts. I can really use these.<br />_________________________________________________________________________________Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-211798007645114536.post-44091959537342152362011-11-16T08:20:00.000-08:002012-05-04T12:11:09.745-07:00That Thing I Don't Talk AboutI'm at <a href="http://www.hopefulparents.org/2011/11/that-thing-i-don-talk-about_16.html" target="_blank">Hopeful Parents</a> today, though I've had more hopeful days.<br />
<br />
<a href="http://www.hopefulparents.org/2011/11/that-thing-i-don-talk-about_16.html" target="_blank">That Thing I Don't Talk About</a><br />
<br />
I can trust you with this, right?<br />
<br />
<strong>That Thing I Don't Talk About</strong><br />
<br />
I pull into the driveway and glance up to my porch. In front of the door sits a
big brown non-descript package. There could be ANYTHING in there. A surprise!
Each month I indulge my fancy and play the part of someone who does not already
know what she will find when she tears the packing tape off and unfolds the
flaps. I try my best to conjure the limitless expectations of Darren McGavin’s
character, Ralphie’s dad, in A Christmas Story as his “major award” is
delivered. It’s here, it’s here! Some days I even tap my fingertips across an
invisible word on the cardboard and slowly, profoundly emulate his wishful
interpretation of the letters, “fra GEE lay.” The irony is that though the box
doesn’t actually bear such a stamp, my forehead could easily read “fragile” at
such moments.
<br />
Upon my first kick-shove of the box into the front door, the game ends. For
I know what it is. It came last month and the month before. It’ll come next
month.<br />
<br />
It is nothing so fantastic, light and burden-free as a leg-shaped lamp.<br />
<br />
Sometimes I let it sit just inside the front door where I won’t often pass
it. I pretend that it’s too bulky for my short self to carry downstairs and
dispatch into its storage space with what’s left from the last box. Rare are
the times it doesn’t send me to such willful denial of its existence that I’m
rendered unable to spirit it away in the name of tidy, objective detail
management.<br />
<br />
Today I let it sit.<br />
<br />
This box changes nothing, adds nothing, promises nothing. It’s not a
surprise for my girls; it’s nothing for me or for my husband, our house or our
cars. It’s not full of gifts I’ve carefully picked out for others. In fact, we
have no choice at all in this. It’s delivered for the cognitive and
communicative differences, low muscle tone, sensory issues and motor processing
problems that conspire to make this box a requirement on a monthly basis.<br />
<br />
Inside are purple-wrapped cubicle stacks from the medical supply company for
my 8 year old with Rubinstein-Taybi Syndrome. The customer “care” reps at the
company are sticklers about calling them incontinence products. The generic
looking logo on the package demurely refers to them as pull ups. But I call
them what they are: diapers.<br />
<br />
Diapers have been in our lives for more than 12 years, with a brief respite
of about 18 months in there before my younger daughter was born. I have only 2
kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in
quantity, duration and effort. But from the very beginning she had a general
idea of when it would end.<br />
<br />
It’s the fact that there is no clear path to the end that makes it daunting.
I have long ceased finding the act of doing the changing particularly
inconvenient when we are at home. It’s just part of everything now. But the
ways we have to consider her dignity, her privacy - who knows, who doesn’t
know, who might mention it around whom – that is what’s exhausting now. Energy
further evaporates when I inevitably wonder if we’ll still be managing these
things a decade from now, 2 decades, 4…<br />
<br />
We grapple with the few scant invitations and social engagements she gets,
wondering how we can figure the logistics if she needs to be freshened. When we
visit other homes, I measure how long we’ll stay by whether the host is likely
to be able to discreetly handle my request for a plastic bag and to know where
the outdoor garbage receptacle is without asking too many questions. We size up
public restrooms, worrying about space, germs and location of waste bins.<br />
<br />
Low rider pants are a bane when you have a child who employs a sensory
satisfying stance of a tripod - hands and feet near each other on the ground and
her derriere airborne. The slippage of her Levi’s partners with the impossibly
high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of
mystery.<br />
<br />
You can’t chat about this with your family and friends. Even my friends
within the disability world, we guard our child’s dignity and our own fragile
case we keep some things in, and we keep quiet. I can’t bear to hear the
earnest suggestions of others, thinking I’d never considered the techniques used
with my older daughter, thinking perhaps the problem is that I have given up. I
haven’t. I believe in my heart of hearts that it will happen one day. Whether
that day is weeks, years or decades from now is the question. The blithe
statement mothers of preschoolers offer mothers of toddlers sends me to a place
I don’t like to spend too much time in. “Well, don’t worry, it’s not like
she’ll go off to college in diapers.” It’s possible. A kid could go off to
college in diapers. If that kid would be accommodated in college, that is.<br />
<br />
There are worse things, yes. But it adds a daily layer of complication and
general hope-suck that compound the energy-devouring effort already put into
every single detail of this disability life.<br />
<br />
This is just so incongruous with who she is, how clever she is, what a
social, complex, witty, inquisitive, powerful young lady she is. Whether we
want to admit it or not, knowing someone wears diapers whether as a result of
being very young, very old or very different, it simplifies that person in most
people’s eyes. It reduces them. Her dad, her sister and I are in constant
combat with this reduction of our limitless girl every single day.<br />
<br />
There it all is, laid out. I cross my fingers for her dignity, that you who
know her and read this will protect it as you would her physical being. I cross
my fingers that the combination lock requiring so many developmental mysteries
to align just so, clicks and pops open one day.<br />
<br />
I cross my fingers for a porch void of anti-surprise packages.Unknownnoreply@blogger.com4