Thursday, July 23, 2009

10 things -- but really, only one

Among the various tasks I have to do at work is triaging new orders that come in for outpatient evaluations and then deciding which of our speech pathologists should see each patient.  Every chart I get has a patient history form that has been completed by mom, dad, caregiver, foster parent -- whoever cares for the child.

Most are run-of-the-mill.  Some are hilarious.  Some, worthless.  One was even insulting. 

And, of course, some are sad.  One mom, who obviously had very basic reading and writing skills, had clearly spent a long time working on her son's history: she had been exceptionally thorough, proof-read it (changing correct grammar & spellings into errors on several occasions), and written a lengthly note sharing her guilt that her child's delays were her own fault.  

But the ones that always get to me come from the parents whose children are unable to speak at all.  Usually these parents are some of the strongest we meet:  their children are so medically involved, fragile in so many ways -- unable to walk, talk, eat, dress themselves, clean themselves -- that by the time we are working with them on communication they have developed a pretty tough exterior.  While I'm sure they have private moments where they grieve for their kids, wonder why, feel guilty, and indulge in the anger they rightly hold, these parents can't dwell on those emotions every day.  They wouldn't survive.  They have therapies, and medications, and tube feedings, and real patient care duties to attend to every single day.  

The history we gather on these kids is a little different.  We try to figure out who's in there, what gestures, expressions, even grunts they might already be using to reach out to the people around them.  It's amazing to me how resilient these kids are and how intimately their families know them that they can understand what, to an outsider, is just a meaningless noise or an almost imperceptible glance.  We try to figure out what kinds of motor, social, and cognitive skills they have.  We ask what kinds of communication approaches have been tried before, what has worked, and what didn't.  

The last thing we ask is for parents to list ten things they would like their child to be able to say.  And I'm sure you already know their first response -- it would be yours and mine as well.  All of them, every last one, answers the same.

"I love you."

Can you imagine?  (I can't.)

And this is one reason, among oh so many, that I tell my daughter a hundred times a day that I love her - and why I truly do know how blessed I am to hear her tell me the same.

Tuesday, July 21, 2009


Many things on my mind these days.  Deciding which to wrestle with first.  Will post when a winner is determined.

I know it'll be hard, but do try to sleep between now & then, OK?  OK.

Saturday, July 18, 2009

Rag doll

I just woke up from the second best nap EVER.

It didn't quite pass the high bar set by The Great Nap of 2006, but man, oh man -- it was close.

I'm so relaxed I'm not sure how I'm managing to sit upright.

Wednesday, July 15, 2009

Grief, you're a tricky bastard

A colleague called yesterday to tell me she had just learned that her sister has a brain tumor. It is aggressive, and does not respond well to treatment. The prognosis is poor.

She is 38, and has two children -- 7 and 11.

Her grief is not mine, but her circumstance brings my own right back to the surface. I understand the helplessness she feels, the anxiety of knowing too much but not enough. Cancer is a sonofabitch; brain cancer, the worst. The treatment robs patients of themselves without offering much in return. It seemed to me to be a relentless undoing of a life, a slow unraveling that all of us -- even Mom -- had to witness every day. It was awful for everyone.

Watching my mother die from that hideous disease changed me; I don't know how it couldn't. To this day I have a single, horrible memory of Mom that defines the entire illness for me, one I'm afraid I'll never be able to shake. It was a moment that captured every feeling of guilt and desperation and confusion that I experienced over all those months; but worse still it was the moment I saw my mother losing herself, so far away and yet stranded here in a body that was destroying her.

I still feel the same nauseating helplessness now as I did that day. I still feel the shame of just wanting to leave, because it was easier than facing her. I still feel like the little girl who's been separated from her mother and is crying for her, desperately looking for her -- only I know I'll never find her again.

About two years ago I ran into an old professor. She was speaking at a conference I was attending, discussing the role that emotion plays in how therapists work with their patients and families. Ever since Mom's illness I had been experiencing this first hand. Whether it was discussing feeding tubes with the parents of toddlers or end-of-life considerations with the elderly, my professional judgement was colored by my journey with Mom. I just couldn't handle another difficult conversation that would inevitably lead me to tears.

Hope and I talked for a long time after her presentation. We talked a bit about the "old days" but mostly about our families. It was clear to her that my loss was still fresh despite the time that had passed. She told me I had to work through the grief.

And I explained to her that I wasn't all that inclined to do so, thank you very much.

But I know she's right, even if I don't really know what it means to "work through the grief." Time seems to help some and so does Sara, who talks about her grandparents as though they are simply living in a magical place even further away than Pennsylvania -- which to her is very, very far away. I have purposely laced some of my old family rituals into our lives today, and this seems to be both comforting and comfortable, and feels like an acknowledgement of who Mom and Dad were and what they left with me. As life goes on the good memories outweigh the bad and I can remember the past without feeling robbed of it.

Until I get that phone call, and I hear in someone else's voice the fear and helplessness that is still so close at hand. And then grief gets the best of me again.

I guess I still have work to do.

Saturday, July 11, 2009

Ever have one of those days?

Ever have one of those days with your kid? You know, the kind where you take her into a store for a quick perusal and she finds a strangulation hazard in three minutes flat? And you know she found it because in the 20 seconds you had actually managed to focus on the reason for your trip, she wanders away from you and you locate her by the "Hey Mama, I can h-gaaaah" that you hear from 5 feet away. When you turn to look, she's got a cord around her neck and grimace on her face.

Yes, one of those days.

Or one of those days where, in an effort to get food on the table (cause that's your job too), you pause for a second to appreciate how smoothly things are going. Maybe a little too smoothly. And definitely too quietly. So when you ask your kid what she's doing and she says "I'm playing in my room," you instantly determine that you are hosed. This is confirmed when you call her out to see you and she comes trotting in with one arm behind her back, certain that you'll never figure out that she's hiding something back there.

What were you doing?
No, what where you doing?
"Cleaning da floors."

And that's when you find that the bathroom hand soap has been squirted all over the bathroom floor, her bedroom floor, her bedside table, her bed, and one sandal -- the other one, thankfully, is still on her foot.

10 minutes are spent coaching her on how to clean up her mess. 10 minutes of your life you'll never get back.

At this point you breath a little easier. The worst is over. Because what could she come up with in the two minutes that you take to go back to the kitchen & make sure dinner wasn't ruined?

Turns out, she comes up with Desitin. The sticky, smelly Desitin that just the other day you had found her smearing all over her boot and told her she was not to get into. Right -- the very same stuff. Except this time she is huddled under the quilt on the far side of the bed trying to avoid detection, rubbing it on her hands and arms. Why? Just because she can, I guess.

Aaaaand game over. Time out clock begins... now. Tears, wailing, an actual - and I kid you not - boo hoo, pleas for release, demands for Noggin.

For the love of God, if I could just get dinner on the table!

She is freed and makes a bee line for higher ground. Now that she's upstairs with her aunt you feel safe, and take advantage of the situation by sitting (that's right, sitting) for five minutes. Dinner is ready. You make her a plate, hopeful that when get some food in her belly the beast will be silenced.

But not so much. Because in calling her to dinner you've interrupted what clearly must be the best episode of Ni-Hao Kai-Lan ever, and you hear about it. All through dinner. Lots of sobbing, but very little eating.

Oh, sweet Lord.

Before the evening ends she will have consumed 4 and a half chocolate chip cookies and you don't even care. She's in bed. Tomorrow is a new day.

And then tomorrow comes. But it's no longer one of those days; now, it's one of those weekends -- one of those rainy, stormy, stuck-inside-all-day weekends.

Chasing the cats.
Using the sofa as a trampoline.
Using her baby stroller as a battering ram.
Honing her macrame skills with the cords from the blinds.
Insisting that the neighborhood dog running through the yard needs to be fed, and weeping when you won't let her go after it.

Save. Me. Now. It's not even noon.

Lemme just say that next weekend, when the Papa is home?

I'm so off duty.

Tuesday, July 07, 2009

Hear me rawr

If you know me at all, you know that I am not an overt feminist. Some might assume that I am not a feminist at all.

Well, you'd be wrong.

While not a supporter of many of the agendas of the feminist movement, I do believe that women are meant to enjoy the same opportunities that men do -- when that is logical. Women are equally deserving of good jobs, quality educations, and sound medical care, just like their male counterparts. But this may not mean we are entitled to always enjoy the same opportunities because, in case you hadn't noticed?

We are wildly different creatures. And for that I say Amen. Different is amazing, and interesting, and beautiful, and quite literally life-giving.

This isn't really a post about equal rights. This is about about equal access to something vital to the well-being of women everywhere: sound medical care.

Probably because of our historically male-driven paradigm (men work/men provide/men lead/men protect/etc), a lot of medical research is conducted with men in mind. Or, maybe more accurately, with men as the primary source from which data is collected. Heart disease, for example, manifests itself quite differently in a woman than it does in a man -- but in the past most public education campaigns were designed around the classic symptoms found in men, as most research had typically been done on the male population. I don't believe this was deliberate, just an unfortunate outcome of an outdated mindset.

The good news? The medical community seems to be catching on to this. Women's health is being discussed in many outlets and researchers are casting a wider net, looking for clues to the genesis - and cures - for disease in both men and women.

But I'm here to tell you, we still have a long way to go. I know this because I'm experiencing the imbalance myself.

I'm not sure when I first heard about PCOS, or polycystic ovary syndrome. I know the first time I ever heard a doctor mention it to me was more or less in passing, as she went over the results of a rather lengthy history I had provided. Buried between the meatier topics of obesity and diabetes risks was a quick castoff, a mention that I had all the classic signs of PCOS -- fun stuff, like being overweight, having irregular periods, oily skin, unwanted facial hair -- and so I probably had that as well. That was it.

A few months later I had a miscarriage.

Soon after that, in a discussion about insulin resistance, I was put on Metformin. It was explained to me that this would help my body overcome the insulin resistance, thereby helping me achieve better weight loss results. The side effects could be unpleasant (and yes, they can be) but we should give it a go. And so we did.

Never one to shy away from the internet for more information, I started doing some searches on this new medication I was taking. It didn't take long before I saw that it was frequently prescribed for women with PCOS -- and hadn't I been told I probably had that, too? With a little more digging I found that Metformin was known to help women with PCOS get pregnant. Get pregnant, and stay pregnant.

That's when I knew that there was no "probably" about it. I really had this thing, this PCOS. And I had likely lost a baby because of it. And nobody told me it might happen.

Happily, I got pregnant again -- thanks to that Metformin, I have no doubt -- and had a beautiful, healthy baby girl. Perhaps I've mentioned her before?

So life went on. I lost more weight. Then I lost my mother, and my father, and most of my resolve, and the weight soon returned. I continued to see my doctors, an ob-gyn and a new internist, and I always brought up PCOS. Not really knowing what to ask, I would tell them that another doctor told me I probably had it. And in lock-step, each doctor would shrug, say yes you probably do, and there's little you can do about it. Eat right. Exercise. Lose weight. Next question.

And I know that their answers were correct. Correct, but not complete.

I'm learning that PCOS, obviously unique to women, is a parallel to something the medical community calls Syndrome X, a high-insulin metabolic state. While my primary concern with PCOS arose from infertility, some recent reading has also taught me that PCOS, like Syndrome X, can lead to diabetes, high blood pressure, and cardiovascular problems. Additionally, because PCOS effects the hormonal function of the ovaries, women with chronic and/or severe cases are also at risk for ruptured cysts, ovarian twisting, internal bleeding, endometriosis, endometrial hyperplasia, and endometrial cancer.

An increased risk for cancer. There's absolutely nothing that terrifies me more.

I think that's worth more than a shrug and a passing comment, don't you? Three doctors -- three female doctors -- never told me any of this. Maybe they didn't know. But they should, and now I do.

Look, I'm not going to lie: Losing weight and getting pregnant were big motivators for learning more about this thing, and they are still big motivators for trying to overcome it. But the more I learn the more I realize that there is more at stake here than dropping a few dress sizes and having another baby. There is my life, and growing old with Rob and raising Sara.

Why didn't they tell me? I don't suppose it matters now. What matters is that I don't let them off the hook so easily in the future. I know better what to ask, and who to seek if they can't provide the answers.

Because I'm a woman. And I deserve that kind of healthcare.


Monday, July 06, 2009

Dying a million tiny deaths

OK. If I had the time and the money and the chutzpa to go there, I would totally go see House Beautiful's 2009 Kitchen of the Year.


Ina Garten.

Ina Garten will be there.

Ina Garten will be there, in an amazing kitchen.

Ina Garten will be there, in an amazing kitchen that she inspired.

And I know if I went we would be best friends.

Because that's how it works, right?

(I love you, Ina.)


Photo courtesy of The Food Network, via

(Please don't sue me for copyright infringement.)

Sunday, July 05, 2009

Not words I would use to describe myself, but...

I think there is truth in some this -- at least for today.

you are a dreamer

  • Your combination of abstract thinking, appreciation of beauty, and cautiousness makes you a DREAMER.

  • You often imagine how things could be better, and you have very specific visions of this different future.

  • Beauty and style are important to you, and you have a discerning eye when it comes to how things look.

  • Although you often think more broadly, you prefer comfort to adventure, choosing to stay within the boundaries of your current situation.

  • Your preferences for artistic works are very refined, although you vastly prefer some types and styles to others.

  • Though your dreams are quite vivid, you are cautious in following up on them.

  • You are aware of both your positive and negative qualities, so that your ego doesn't get in your way.

  • A sense of vulnerability sometimes holds you back, stifling your creative tendencies.

  • You're not one to force your positions on a group, and you tend to be fair in evaluating different options.

  • You are balanced in your approach to problem-solving, not letting your emotions hold you up.

  • You prefer to have time to plan for things, feeling better with a schedule than with keeping plans up in the air until the last minute.

  • You do your own thing when it comes to clothing, guided more by practical concerns than by other people's notions of style.

  • If you want to be different:

  • Your imagination is a wonderful asset, but don't just dream—be bold enough to take action and explore new things!

  • Consider a wider range of details and possibilities when thinking about the present and the future—don't be too set in your ways.

  • how you relate to others

    you are considerate

  • You trust others, care about them, and are slow to judge them, making you CONSIDERATE.

  • You value your close relationships very much, and are more likely to spend time in small, tightly-knit groups of friends than in large crowds.

  • You enjoy exploring the world through observation, quietly watching others.

  • Relating to others so well, and understanding their emotions, leads you to trust people in general, even though you're somewhat shy and reserved at times.

  • Your belief that people are generally well-intentioned contributes to your sympathy regarding their problems.

  • Although you may not vocalize it often, you have an awareness of how society affects individuals, and you understand complex causes of people's behavior.

  • You like to look at all sides of a situation before making a judgment, particularly when that situation involves important things in other people's lives.

  • Your close friends know you as a good listener.

  • If you want to be different:

  • Because other people would benefit immensely from your understanding and insight, you should try to be more outgoing in social situations, even when they make you uncomfortable. Others will want to hear what you have to say!

  • Thanks to @zigged for the link!

    And to prove there's no sour grapes

    Some blogs I've recently stumbled across that I love:

    I would totally love hanging with this girl. And not just because of the Red Velvet Black & White cookies, Root Beer Float Cake, or Brown Sugar Bacon Waffles (though none of those things would hurt). No, I would dig an afternoon with her because she's funny, clever, and as nice as can be. (Thanks to Casey @ for pointing us to this site with her rave review of the Root Beer Float Cake.)

    In keeping with the baking theme, I bring you Conversations With a Cupcake. This blogger has managed to blend mad baking skills with charm, wit, and illustrations. Oh, and she does some very generous things along the way. I've found my birthday cake for next year at this site -- seriously, I've already sent the link to my sister.

    I love this woman because she loves fabric. The fact that she has a knack for easy, accessible, and often inexpensive home decor just sealed the deal. When I knew it was true love? Her window mistreatments, where she created lovely valances without the benefit of a sewing machine, curtain rods, or a hammer. Cause why bother with a hammer when your high heel will do?

    A New Zealander with crazy crafting skills. I found her while searching for a tutorial on freezer paper stenciling. She had only been on my blogroll for a couple of days when she posted about her mother's sudden death, and now my heart aches for a woman who I don't even know.

    OK, full disclosure: Elaine is one of my BFFs. Has been for the longest time: college, marriage, miscarriage, birth, losing our mothers, losing weight, gaining weight, scrapbooking, singing, traveling, and more laughing than I can begin to list. So of course I follow her blog -- but she also happens to be an awesome photographer. And she's just as genuine & nice in real life as she seems to be on her blog. I know, I know... I'm a lucky girl.

    This is one of those blogs that makes me want to chuck it all and stay at home so I can sew all of Sara's clothes, grow & preserve all of our food, and snap awesome shots of everything while I do it. I used her twirly skirt tutorial to make my first (and only) successful item of clothing and am itching to try the coffee cozy pattern next. Because the only thing better than that first cup of coffee is that first cup of coffee with a cute cozy surrounding it.

    So, what about you? Which blogs are you loving these days?

    Saturday, July 04, 2009

    Woe is them

    The internet is an amazing thing.

    Over the last ten years it's become an almost indispensable thing for most of us -- I know that I, personally, have used it to:

    • "Date" my husband (before he decided it would be easier to move than drive 20 hours to & from Indiana every weekend)
    • Plan my wedding
    • Find long-lost family and arrange a reunion to finally meet them
    • Track my pregnancy
    • Find my job
    • Look for a house
    • Look for houses for other people
    • Decide not to buy a house
    • Look for contractors
    • Renovate my house
    • Learn to sew
    • Reconnect with old friends

    And then there are the daily things -- tracking the sales at the supermarket, finding recipes, reading the news, getting directions, checking the weather, looking for hotels, reading blogs...

    Ah, reading blogs.

    Blogs are probably the most interesting thing out there. Most (like mine, I fully admit) are not really worth the time spent reading them, at least to people other than family & friends. Some are blatant marketing tools. Others never really get off the ground. But now and then a blog really hits on something: an audience, an idea, a movement, whatever. These bloggers have a voice that people like to hear. Some set out hearing that voice from the beginning, while others evolve, like the classic "mommy blogger" who eventually manages to filter her thoughts down to one main idea -- say, going organic with your family.

    I've often wondered if I need to find a voice too. But that assumes that I'm trying to cultivate a following (I'm not) and that I have the talent to sustain it (I don't). This blog is for me and for my daughter. I'm flattered when people stumble across here and find something I've said interesting or funny or useful, but that's just gravy.

    Over my decade or so traveling the internet and reading blogs I've had the pleasure of watching a few bloggers transcend that gap between personal story-telling and public speaking. Sometimes I think it's just happenstance; sometimes it seems to be very deliberate. Either way, I continue to follow them because I, too, happen to like what they have to say.


    Except when they write posts explaining to their readers how they just don't have the time to write for them right now. These same readers, whose loyalty and encouragement has granted them a public forum, opportunities for income, sometimes even entire careers -- no time. Too busy. Too conflicted. Too in demand.

    Too full of themselves.

    Don't get me wrong, I don't think bloggers owe their readers anything. Unless, of course, their readership has earned them sponsors, ad revenue, freebies, and book deals. Then I think they do owe us something: the voice they so earnestly wanted us to hear in the first place. Because without regularly sharing that voice, their audience -- along with all those benefits -- eventually disappears.

    And without a doubt a new blogger will be happy to fill their shoes. Because the Next Big Thing? Is already out there.