Sunday, March 28, 2010


Dads are the ultimate paradox for me - dependable, sturdy, constant. And yet the dads of my childhood, including my own, did not last long. I met only one of my grandfathers ever and my own dad died when I was 10 years old - he was just 4 years older than I am now. Uncles and dads of friends seemed to disappear at regular intervals in my formative years. My father-in-law died before the "in-law" part could be made official.

My best friend's dad died tonight. He was in his 80's, so not so very temporary as many. But still, my childhood conviction that dads just can't stay as long as moms is reinforced.

I remember leaning on my father's shoulder at church, the feeling of the stalwart tweed suit jacket material on my cheek. It felt forever, dependable. But it wasn't long before I had to switch that shoulder out with my mom's narrower shoulder - that is, when it was my turn among the 10 of us.

On Wednesday Addison had an EEG. The neurologist is a very soft spoken man with a substantial accent. I leaned in and put all I had into receiving what he had to say. I listened, I let go of my cautious skepticism and I believed. I trusted. He is a slightly stout and bent man with olive skin, a conspicuous wedge nose, salt and pepper mustache, deep set eyes and thick eyebrows framed by dark rimmed glasses. His white doctor's coat could easily be swapped for a chemist's lab coat. The remarkable resemblance to my father (a chemist) in his 40's is disorienting at first and then calming. The neurologist did not need to convince. The benefit of the doubt was his for the taking. A frightening experience, but I found peace enough to transfer some to my sweet girl.

Earlier today I rushed from the coffee shop to my car, a hundred things on my mind that needed doing before the week's marathon of meetings and prep. But I was slowed to a near halt as I caught a certain strain in the air. A homey old fashioned smell, dark and relaxed - a very Sunday smell. Apple pipe tobacco. I honed in on the older man it came from. He puffed and looked back somewhat defensively. I thought, no, not dad. Of course not. But I gave the man part credit anyway - credit for making a pipe and tobacco choice that put my dad in front of me again for a moment. I don't think the grateful half smile I offered was expected.

I have been without my father for 32 years. But I am still being raised by him.

As a child, I spent as much time at my best friend's house as I did at my own, just 3 doors down. She sat at the table with my huge family and I sat at the table with her huge family for countless dinners. My many siblings teased her as if she were another of us and hers cajoled me in the same way. After my father died, her father offered to walk me down the aisle at my future wedding.

My parenting decisions, my thinking as a human in general, are drawn from 2 houses, from 2 sets of guardians - my own parents, and my best friend's parents. And thus it has been for many years, despite the lack of daily contact with my friend's family for the past 20+ years. I spend a lot of time in their house still, in my mind. It is a place of open comfort and acceptance, of humor, of unflappable loyalty.

And so, for me, it will continue. I will always look for and see Larry in others. I will be brought back into the sweet green enclave of their yard by the smell of dill and blacktop, into their buzzing home at the mere mention of popcorn, Golden Girls, the Horicon Horns. When I pass a house sporting a lawn sign, - though it bears other words, my mind's eye reads Larry's name, Clerk of Courts. When things get cluttered and complicated, when I need to get back down to essentials, I flash back to the countless times our tiny girl knees bent in a crouch inside my friend's parents' closet, sifting through a box of mementos, turning each over, guessing at meaning - these vestiges that signified the highlights for her parents and left the inconsequential things to fall away outside of the box.

I am made up of my childhood. So I am made up partly of Larry and the rest of his family. So are my children and so will theirs be. To use a word we never spared as children: infinity.

His family and friends ache with loss. Though she is nearly 4,000 miles away right now, I hope my friend can feel me sitting nudged right up next to her side, like we used to sit as little girls.

There is no end, Larry - just a constant, strong, wide wake behind you.

Thursday, March 25, 2010


I am reminded by the birthday slideshows I made last summer for my ladies. Reminded of my girls' power, their joy and their resilience.
And reminded of my own.

Monday, March 22, 2010

easy to forget

When you absently yank tissue from the box and brace yourself for the next deep sob; when your child, your happy, confident big girl sits on your lap, truly unable to stop crying, it's easy to forget everything else. When you wonder how and why she mourns so actively someone who died years before she was born; when you don't know how to help her through this grief that washes over her every few years with such debilitating rawness, you don't think about other things. When she asks questions about him and you answer lightly, believing you've given her a little peace with funny stories, only to hear the next day from her teacher that she broke down over the very trivia you gave her about the grandfather she never met, you forget the rest. When you desperately want her signature beam back on her face, but see that even when the tears stop, all that's left are knit and mulling brows, and you feel powerless to change it, you just forget everything else.

When you get a note from your kindergartner's teachers about "episodes" of shaking that seem beyond her control, you can read only those words and no others. When your small girl seizes; when her eyes are absent and her body rigid, you are right there with her and nowhere else. When you dial the number to a neurologist for the first time, no other numbers exist at that moment, no other voice but the one at the other end of the line. When you schedule the first test, you don't think about what comes after it.

When you have friends aching in bereavement, all other friends recede. When worry, fear and loss are prevalent, you forget about peace and progress. It's easy to forget.

And then you sit on the swing next to your girl as she flips her feet up and lets out a yelp of unabashed satisfaction. You look at the curve of her upside down chin and consider it the sweetest and softest lilt of a line ever. You see her legs expertly wrap around the swing chains and deeply appreciate the little body twist she employs to keep herself swinging. And you forget about seizures and neurologists for a while.

The volume and tone of the throaty and spontaneous laugh reveal how little control your big girl has over her guffaw. She stabs a dirty white foot cover at you as you reach to yank your own off in battle. You roll on the floor, bones bumping others and the carpet, both laughing and jabbing, yelling "sock attack!" You raise your sock-weapon and offer an affectionate, silly, defensive block, prolonging the beam trained on you. And you forget the sobs and the break down at school.

It's easy to forget.

Thursday, March 18, 2010

Angry Post

There is a kid that Addie knows and seems to like. Adults have told me that this other child is very interested and engaged with Addie, that she seeks Addie's company during various parts of the day.

Addie and this child have the same skirt. They each count it among their favorites and wear it often, but on different days. The other child has shyly shown interest in seeing if she and Addie could plan to wear it on the same day, just for fun. So I sent an email to her mother to arrange it.

This is part of the response from the mother:

She often asks if Addie can come over for a play date; I've gently explained that it would be too hard for her and for's so cute though.

I will just list in random order all the thought paths this sentence hurls me towards - some less generous with the benefit of the doubt than others. A titch on the passive aggressive side, but responding seems fruitless to me..fruitless like, say, spending time with Addie. Ooh, and I'm off and running! I choose to disclose here that the last month or so has been one of the lousiest spells (apart from the last post, which still buoys me) for our family in a long while. So my rose colored glasses are scratched, bent and otherwise compromised in their effectiveness. So I'm just gonna let 'er rip.

One more time for reference: She often asks if Addie can come over for a play date; I've gently explained that it would be too hard for her and for's so cute though.

- cute, yes. Your daughter is darling for thinking that my daughter might actually be capable of a social event like a play date. Really precious.

- You were gentle, that's nice, I'm relieved you thought to spare your child's sensibilities in this. I hope I can be gentle when I tell my own daughter that her friend's mom doesn't think it'd be worth the trouble to get these two kids who enjoy each other together, that she believes it would be a big drag for everyone. And that her friend will be taught to think the same way. I'll have to think hard about a kind way to tell my girl that the door to this particular friendship is being closed - gently, though - not slammed. That the trajectory of acceptance of differences and inclusive thinking that Addie's friend was on is not being lopped off, per se, but just disconnected irrevocably.

- my initial email was in no way a veiled request to drop my daughter off so I can go get a pedicure. The underlying motivation in trying to grant your daughter's request about the skirt was to make it clear to her that I see how kind she is, how generous she is with her patience when relating to my daughter, that both Addie and I recognize how she voluntarily goes out of her way to be with Addie. And to let your daughter know that Addie likes her, too.

- I get how you yourself might not be up for such a thing (this thing that was never even on the table), but how is a play date hard for 6 year olds? In what ways? And how can you predict that it would be too hard for my daughter, whom you do not know?

- If we, as a family, prevented Addie from being involved in things that might be "too hard" for her and/or for others, our daughters would never have met. My daughter would not be able to communicate at all, she might not be walking, she would not have played soccer, she would not be in scouts, she would not do summer activities alongside her friends, she would not ride horses, she would not know how to swim, she would not enjoy visits to various places in the community, longer trips to other places, she would not swing, slide down the slide, run, enjoy ice cream, she would not have experienced the number of play dates and other things with friends that she has thus far.

- your daughter asks about play dates because Addie tells her about the ones she's had with her other friends, because your daughter has heard other kids talk about these fun times, because she has seen the photos. I'd be willing to bet that nothing your child has come to understand about play dates with Addie would make her think it would be "too hard" for anyone, that the effort would outweigh the return.

- we are both mothers who love our children and want them to grow up confident and valued. Why on earth would you think I would want to hear, much less agree with, your assumption that a social life is beyond my child? Why would you believe that I should twinkle at the naivete of children who might believe in Addie, recognize her contributions and enjoy being with her, that I might wink at their sweet nonsense?

Just like you, I'm raising a family here. And I take solace in knowing that the sentence offered to me above is born of an attitude that is the exception, not the rule.

Your daughter and my daughter are kids, they are schoolmates, they are friends. I think that's what your daughter is trying to enlighten you about. She has my most sincere wishes for success on that.

Monday, March 15, 2010

Come Home with Me

I must ask you to click over to Hopeful Parents for a homecoming of sorts.

Home Again, Home Again, Jiggity Jig

Monday, March 1, 2010

More about words...repost

From March 2009.

Spread the Word day is 3/3/2010 this year. Take the pledge.

You see the link below - the end the misuse of the R-word campaign. Wednesday is the day and I will be wearing my snappy blue shirt with the Respect logo on it, as will thousands and thousands of others.

I don't talk about it much, as there are all sorts of assumptions about a mother's perspective floating around. Sometimes it's assumed I am speaking from a gaping wound I have, one caused by having a daughter who was born with mental retardation. Bitterness is often attributed.

I don't have any gaping wounds or bitterness. What I have for my daughter is pride, hope and respect. I have what every mother of every kid has, the desire for her child to find her place in the world and make the most of it. I want for her to know what fulfillment feels like.

But the misuse of a clinical term is a bit of an obstacle to this. As long as people choose to use the word as an insult, there will exist a misconception about the capabilities and value of people who are indeed affected by cognitive differences.

The usual counter to what is packaged into political correctness is to piffle at it - bah, it's just a word and it's my problem if I choose to be hurt by it. I am not actually hurt by it. Nor is my daughter. Hurt is not the right word. I am disappointed by the choice to use the word this way. If regular joe's think it's fine to say, then we are far from the society we can be, we profess to be: one that not only accepts differences, but celebrates them. We're just not there yet.

And this is not a freedom of speech issue - a rule that the word be erased from today's vernacular altogether is not what the campaign is about. We all know it's just a word. It's about rising and becoming a culture where people opt in to respecting those that are often either invisible or marginalized. Use the word all you want. Just keep it clinical and factual.

I know this - when the word retard or retarded is flung to amuse and insult(those of typical cognitive function, that is) simultaneously, I do know that it is not with direct, intended malice to my daughter or anyone intellectually diverse. The effort to encourage thought before throwing out this word to describe something less than desirable is not about the uprooting of purposefully bad intentions people have towards those with developmental disabilities, towards my child - I think those intentions rarely exist, if at all - it's about looking at the big picture to see the affects misuse of this word has on general acceptance and true inclusion (as opposed to just tolerance and/or patronization) of people like Addie. It's about awareness and mindfulness, really. Perpetuating the misdirected use of a word that describes part of who my daughter is stands in the way of my ultimate goal of ensuring she is a full citizen of the planet, contributing in meaningful and valuable ways.

A soapbox this is not. I am on the ground with everyone else. I too, have used this word in the past in just the ignorant ways this campaign is attempting to enlighten. A small chunk of awareness was bundled in with the packet from the geneticist containing our daughter's diagnosis a few years back. Bonus free gift.

You got Addie's back? Somebody else's back? Post a comment here on Farmer John and then make yourself heard by clicking here:

Spread the Word to End the Word

***photo, smile and wonderful afternoon furnished by Addie's other family: The Bautistas***