Monthly Archives: October 2009

Caweew Day

A couple days ago I was asked by a fellow parent at my boys’ school if I could fill a last-minute hole in the Career Day schedule at school.  In the interest of full disclosure here, I will admit that I tend to skulk around on the sidelines wearing dark hooded cloaks and huge Hollywood sunglasses when those notices and emails come out about the school’s annual Career Day.  Why is that?  I love my job and I don’t mind talking to people, especially kids, so I couldn’t tell you.  Believe it or not, I have a fundamental shyness that sometimes takes over, and this is one of those times.

But I like this mom who’s organizing it and I didn’t have anything going on that I couldn’t rearrange, so I said yes, sure, I’d talk about my job for 20 minutes to a second grade class.

Every few hours over the past couple of days I suggested to myself, You should really think about what you’re going to talk about on Thursday morning, and then promptly didn’t.  Seriously, I had no idea.  No notes, no particular structure to what I wanted to tell them.  I had more questions than answers: Do I stop and talk about autism, or is that my whole 20 minutes and not really the point of this? What do I do?  How do I put that into words for little kids? And so I truly walked in there with a head full of questions and absolutely no plan this morning.

I realize now that I probably did this because I knew on some level that I didn’t need a plan.  After all, I am comfortable performing, I regularly spend many hours a day talking to large groups of adults, and I am extremely comfortable around groups of children.  It’s what I do all day.  I might be reticent about signing myself up for this, but when asked, it’s not actually a challenge.

So I walked in with all sorts of bubbly enthusiasm and asked them if they knew why I was visiting.  The first boy to raise his hand told me, “Because it’s Caweew Day!” (No lie. Sign him up!)  Next, I told them what I do for a living.  Half a dozen kids yelled, “Ooooh!!” and  jumped out of their seats waving their hands at me, like they had been in a secret club for years and I was their long-lost leader finally come to claim them.  Those were the kids who go to speech therapy.  I knew that before they told me, and so I let them tell the rest of the class what I do for a living.  They did a pretty good job, describing work on /r/ and /l/ sounds, writing, letter sounds, and sign language.  I talked to them about all the names for my job: speech-language pathologist, speech therapist, speech teacher. And then I told them that I prefer to be called something different.  A hand shot up. “Mom?” asked one of the boys confidently, sure he had it right (I had told them that I have two children in their school).  Delighted, I ran over and gave him a high-five, telling him that yes, absolutely, I love to be called “Mom” at home, and then told them that I prefer to be called a Communication Therapist at work.

I explained to them what communication is all about and the importance of non-verbal communication.  I invited my little “Caweew Day” pal to come up for a role play. I had him ask me to play with him on the playground and I demonstrated how I could answer him in various ways without words, and the fact that he was watching me and understanding my facial expressions and gestures without my having to instruct him to do so.  I explained how important that is, and that I teach kids to do that and to pay more attention to it.  We talked about play groups and AAC devices and good toys for therapy.  I let the kids who go to speech be the superstars and tell their friends their favorite speech games.

There were some wonderful questions.  One girl up front raised her hand and asked me if the job is “Fun — or scary?”.  I asked her what she thought might be scary, and she suggested that when a new kid comes in I might feel a little scared sometimes because I wouldn’t know what they’re like.  What an astute question.  I suppose it was a window into how the kids feel when they walk in to the clinic for the first time.  I explained that I don’t feel scared about any kids but that if I ever feel nervous around a new student it would only be because I might wonder if I’ll be able to help them enough (although I pointed out that the longer you do the job the less you worry about this).

Next, a boy raised his hand and asked the apparently all-important second grade question: “Who’s the boss at your work?”  When I answered, “I’m the boss there,” 25 heads snapped to attention and 25 pairs of eyes stared at me in wonder.  Another boy shared, “My dad’s the boss at his work.  You have to get there first to be the boss,” followed by a rambling explanation of his father’s career history.  Okay, moving right along, then!  Then another worldly wise boy asked, “So did you buy the shop?” which prompted me to describe the clinic where I work and explain the whole space rental and share set-up.  (See, it’s really good that I didn’t plan anything, because how could you plan for this?)  I must’ve described the environment and tone of our clinic really well because suddenly a sweet boy who’d been bouncing up and down on a slanted foam cushion the whole time made a strong association – he raised his hand and told me he goes to my favorite local OT clinic and and who his therapist was, and I told him to tell her “hello” for me.  We had a moment, he and I.  I loved that these kids were all proudly sharing their therapies with each other and I can tell you for sure that the kids who’ve never gone to a therapist for anything were dying of jealousy.  I might’ve emphasized how awesome it is just a little bit here and there.

Before I left I asked how many of them thought they might want to be speech therapists when they grew up and at least 90% of their hands shot up.  I’m guessing the response was going to be 100% if asked by the guests who came in after me – musicians with props – but given the fact that I didn’t know about speech pathology as a career option until my senior year in college, I figured this was pretty good.

Something tells me I’ll put away the dark cloak and sunglasses and volunteer to spend the whole morning doing these talks next year.


Generation Gap

I’ve decided that, really, all swingin’ single 20-somethings in a big city should simply stop asking people like me – middle-class moms with young kids – what their weekend plans are.  Because it does not matter how cool I think it sounds, how excited I am, it never translates well.  The conversation just fizzles in a most awkward way.

If we’re going to a show (which is not a frequent occurrence in and of itself), we can’t just let it go at that.  Oh, no.  It becomes all about which bars and restaurants are close to that venue.  Not only do I not know, not having lived in this city before kids, but we have neither the money nor the energy to go out before or after a concert. We just don’t look at our watches at 11:30 pm and say, Hey, we just blew $100 on those Wilco tickets and another $60 so far on the babysitter – let’s go out for $12 drinks and stay out a couple more hours!

But if all the 20-somethings had this reality spelled out for them, I fear there would be a whole generation without children. And then who would my kids babysit when they’re in high school??  Who will wax their brows?  I mean – have you seen Baxter’s eyebrows??  So I listen to the explanations, the descriptions of great bars and fun nights out, and nod as if we might just stop by there.  And that’s really the best case scenario, when I have something like that to chat about.

Here’s an example of a conversation I had yesterday with the girl* who was waxing my otherwise-insane eyebrows:

Girl with the tweezers: Any special plans this weekend?

Me, excited to have anything at all to say, other than something along the lines of “I get to go to the grocery store alone tomorrow!” or “Taking Lyle to a Pump It Up party” or “Church and soccer”: Yes!  Some friends of ours are coming for the weekend!

Girl: Fun!  Where are they coming from?

Me, laughing a little: Um, well, they live here, in Chicago! (See?  It’s already going downhill – I should’ve said Manhattan or anything more exotic than “Here”.)

Girl: You mean…they live in the city?

Me: Yeah!  They’re just coming up with their kids and spending the night with us, it’ll be really fun.

Girl: Wait – where do you live?

Me: Chicago, yeah, north side.

Girl: perplexed silence

Me, starting to ramble now, but still enthusiastic because I am super excited about this plan: Well, you know, with all the kids, it’s great because the kids can stay up late and have a sleepover party and then we adults can all hang out and stay up late without hiring a babysitter…and we can make dinner together and then breakfast in the morning…

It’s a good thing I didn’t mention the fact that we could even go to church together on Sunday.  But I think I forgot to tell her about the booze.  I mean, seriously, if there was one thing to tell her to help her muster up a little enthusiasm about my plans, it was going to be that our friends have some kind of fancy drink blender that they’re bringing so that we can drink some awesome cocktails tonight.  Duh. I need more practice at this.

But at least she doesn’t know about the robe I’ll probably be wearing.  That would’ve done her in.

* When I was younger, I was adamant that any female over 18 was to be referred to as a “woman”, not a “girl”.  The older I get, no matter how much of a feminist I am, the weirder that seems.  Now I choose the label based on the actual maturity of the subject in question.  This subject? A girl.

Where’d that Big Kid Go?

photoFor years I’ve watched as other bloggers grapple with the issue of their children’s privacy in the blogosphere, always with valid and understandable reason.  At its inception, my blog was intended for the eyes of my personal friends and family, and I wasn’t going to be writing things about my inner life that would require privacy.  It never occurred to me in a million years that someone I didn’t know might find it and read it.  Furthermore, although I know many people do, I have no concerns about pictures of my kids being on the Internet.  So it was a no-brainer to  use my kids’ real names and post photos of them.  At this point there’s no going back, even if I wanted to.

But as Baxter’s 9th (!) birthday approaches next month, I am acknowledging a shift that I started to make unconsciously last summer, and that is to pull back on what I share about his life.  I have no doubt there will be stories and photos and God knows what else going on here that relates to him, but I will be leaving the hard stuff – the struggles – out.  He’ll have his tough times, but I won’t be discussing them here unless I am able to judge with confidence that it wouldn’t be embarrassing to him to have it shared, and some useful parenting lesson lies within the story.  He is old enough now to tell his own stories, and in fact is writing stories from his personal history for school these days, and so I hand that job over to him.  And he’s an excellent writer, let me tell you.  Maybe I can talk him into starting his own blog.

And so The Wonderwheel may seem a bit Lyle-heavy at times (maybe it already has, as I started this practice a few months ago quite naturally), or perhaps it will seem as if my older child is heading into the tween years without a care in the world. Should this bother anyone (including Baxter someday as he reads this), I remind you that I started blogging four years ago because of Baxter and that he has his very own blog all about him, my first blog Baxtergarten, still out there on the Internet for all and sundry to enjoy.

Me, in All My Glory

Lyle decided to draw a picture of me today in the car on the way home from school.  It is one of the best things I’ve ever seen and I will keep it forever.


Can a Blogger be Too Happy?

unicorn_rainbowI have to admit it – I’m feeling self-conscious.

I feel like it’s all sunshine and cotton candy over here.  I mean, maybe I’m a little nuts; I did recently write two rather serious, dark posts about my grandparents vis a vis aging and elder care issues.  Those weren’t especially uplifting.  But I can’t shake this feeling that you, dear readers, are all out there rolling your eyes, gnashing your teeth, and thinking, We know you’re working less and the boys are both in school and you have time to breathe and your kids are calm, happy and organized , and hell – even when they have fits because they don’t want to play soccer they end up flying around the soccer field on the top of the world in the end. How endlessly fascinating!

And who could blame you?

Now, to your credit, none of you have actually said this out loud or been anything but pleasant and supportive, which is really super nice of you, but I wouldn’t blame you if you had.

At the same time, I’m also aware that I may have simply and erroneously internalized the message I heard a couple years ago when I was a contributor to a large-group-of-mothers-blog that shall remain nameless.  The message was, in a nutshell: People don’t want to read about your great vacation or how well your kid is doing – readers want something they can relate to.  So give them your bad day, your deteriorating relationships, your failed parenting moments. That’s what brings in the numbers, ladies! Further, we were informed that we Midwestern mothers were the worst culprits when it came to blogging about the niceties of life and thereby tossing our own popularity and success as bloggers into the crapper.   I promptly quit that blog, crying BULLSHIT! on my way out, not because that message is implausible if you are focused on your “numbers”, but because nobody tells me I have to write about how crappy my life is when things are, for a little while anyway, going great.  Nobody puts Baby in a fake shit storm.

But despite my rejection of it, that theory – fact? – is never far from my mind, especially when things are going well like they are right now and I write a few posts in a row that literally shower my kind readers with too many unicorns jumping over rainbows.

However.  I force myself to assume that my little cadre of readers comes back to hear my honest voice, which I value enormously in the blogs I read.  If what’s going on is fabulous, that’s exactly what I’ll be sharing; the rest of the time, I’ll give you the exhausting days, the parenting mistakes, and the fact that I’m out of wine at a very bad moment.  I would expect the same from everyone else.  Do we have an agreement?

If you have a blog, do you think about this? I’d love your insights.

Close Call: On Quitting

Lyle did not want to go to today’s soccer game.

It started yesterday, when I mentioned that there would be soccer today.  I don’t want to go. I told him we’d talk about it in the morning.  It started again first thing this morning.  I put it off again, suggesting we discuss it after our weekend guests left, so I didn’t hear about it for a few hours. But as soon as their car disappeared from view, it started again.  No soccer.  There was whining and a lot of general freaking out.  After some thought, I told him he didn’t have to play but he did need to get his uniform on and we’d go to the field, where  – if he so desired – he could explain to his coach that he didn’t want to play today.  He loved this idea, especially when I promised I’d help him talk to the coach.  He put on his uniform and then pulled on his winter hat and scarf, despite the fact that it was in the 50s outside.  I suspected he was covering up in order to feel more secure – kind of like throwing a blanket over one’s head – so I didn’t argue. He got into the car looking like a despondent, over-dressed little elf.


On the way there, he expressed again his dislike for soccer.  With complete honesty, I told him it doesn’t matter to me if he continues with soccer; that just because Baxter likes it doesn’t mean he has to be a “soccer guy”, and after this season he doesn’t need to sign up again.  I told him he could forego the spring season he’s registered for. We talked about things he does like, and he agreed with my suggestion that maybe he’d rather swim than play soccer.  I mentioned that he’s starting violin lessons soon and we don’t want to be too busy, anyway.

At the field, we approached his coach and explained that Lyle didn’t feel up to playing today but that we’d stay on the sidelines in case he changed his mind.  The coach was extremely understanding, simply smiling and saying that was fine.  (Gotta love AYSO!)  And so we set up a chair and sat down under the clear blue sky together, and watched the kids practice.  Realizing there was absolutely no pressure on him, Lyle’s demeanor brightened and he began to strike absurd poses for me in his hat and scarf, and asked me to take some pictures of him.


I didn’t remain silent on the soccer question.  I occasionally asked things like, Do you want to put your shin guards on now in case you change your mind? So you can just run out there? [No.] and You might want to think about watching during practice and then joining the game afterward. [No.]  As the game began, I thought about how foreign this game is to Lyle.  He’d never watched it before he started playing this fall, and all the other kids on his team played last year.  He always enjoyed running with the pack on the field, but I suspected he didn’t truly understand the basics.  So I decided that since I knew he wasn’t going to play, I could use the time to teach him a bit more about the game.  I began to play sportscaster for him, explaining what was going on in the simplest of terms.  I did it with a lot of excitement and he was riveted. Look!  Your team has the ball and they’re working together to try to get it down to their goal but – oh, no! – the blue team has it and – oops! – red has it again! Wow, they’re passing it to each other to get it down there!

Without any warning, Lyle suddenly leapt off my lap to the grass and exclaimed, “It actually does look pretty cool!  I’m changing my mind!” and he whipped off the hat and scarf, jammed his shin guards into his tall red socks, and ran onto the field as soon as the coach gave him the sign. I was well and truly shocked. Lo and behold, he played with more enthusiasm than I’d seen all season.  He flew ecstatically, arms outstretched, around the field, and kept up with his teammates with a gallop and a spring in his step.  He confidently made contact with the ball quite a few times, and his coach gave him opportunities to shine.  It was clear that the boy had chosen this.


The best part was that he wore an enormous grin the entire time.  Sure, sometimes he flew off in the wrong direction, and I was amused to see him pause mid-game to study the league name and number on his own shirt, air-writing the numbers and letters to himself for a minute.  But he was happy.  I have to believe that for Lyle, knowing he had total control over the decision to play (and a better grasp of how to play) gave him enough confidence to change his mind and go out there, swooping around the field on a crisp fall day, loving every minute, rather than digging in his heels, which was my biggest fear.

I don’t know if Lyle will want to continue playing soccer, and truly, it doesn’t matter. He’s only five and it’s one sport of many that he can try.  But it would have bothered me if he’d quit today not understanding the game (at a five year old level) and not realizing that he is absolutely fine at it.  I knew that the only shot we had at him playing again was if he felt no pressure about it. It had to really be fine with me if he walked away from it, and it was.  If he doesn’t want to go back next week or in the spring, I’m grateful that he was willing to change his mind, show some flexibility in his thinking, and grin his way through this game today.

This won’t always be so easy for me; my kids will want to quit things that mean a whole lot more to me, and it will be much more difficult for me to be so zen about it. I know this. There will be days when I have to let go of my own hopes and dreams for them. Thankfully, today wasn’t one of those days.


Routines and Independence

photoBack in August, a few weeks before school started here in Chicago, I read this post on one of my favorite blogs, Christine Carter’s Half Full: Science for Raising Happy Kids (in which she uses scientific research to back up everything I happen to believe about parenting!).  Christine was writing about ways she was planning to get her girls prepared for the necessary routines of school, such as getting out of the house on time each morning.

Now, my kids weren’t going to be challenged by getting up earlier for school because they appear to be the only children in America who maintain their usual sleep schedule in the summer – no staying up later at night, no sleeping later in the morning.  This was not our preference, it’s just the way they are hard-wired. However, I did know it was going to be a stretch to fit in everything that needed doing in the mornings; there would be no sitting in our pajamas watching Curious George at 8am.  And I also knew that Lyle had never experienced the morning rush, lucky little man, and so this would be a big change.  I share Christine Carter’s belief thatfamily happiness is all about being in good habits so that we don’t have to beg and bribe our kids to do routine things, like brush their teeth. I want my family to be like a well-run school: kids are in the habit of washing their hands, helping out, putting their things away.”  I couldn’t have said that better myself if I’d tried.

I took her cue and that night, Matt, the boys and I sat down after dinner and discussed it.  Although both kids approached the new school year with some anxiety and ambivalence, they were interested in what was going to be expected of them, and they always love to be part of the creation of family rules and routines. I think most kids do because it gives them the sense that they are important members of the family and they gain a sense of ownership about their lives.  We talked through what needs to be done before and after school, and made decisions as a family – such as coming up with the idea that this year we would try making lunches after dinner to take that job off the busy morning list (a huge help – they make their own lunches every night, as pictured above).  I wrote a draft of our ideas as we talked and once we’d all agreed to the routines, I typed them up.  All of them are posted on the refrigerator and the before school list is also posted in their room.

To give you an idea, here is their list of expectations for independent tasks to be completed each school morning, in kindergarten & fourth grade:

  1. Get dressed – is it gym day?
  2. Straighten out bed
  3. Eat breakfast
  4. Clear dishes
  5. Wash hands & face
  6. Brush teeth
  7. Put your lunch in backpack
  8. Is everything in your backpack? (Lunch & drink, Folder with homework, Agenda book, School books – each one is broken down on its own line)
  9. Use the bathroom
  10. Put your jacket and shoes on
  11. Be ready to go by 8:15!

The after school and after dinner lists are much shorter but no less clear and sequential. The boys come home and they know that after their snack the first order of business is to unpack their backpacks, empty their lunchboxes, and get their homework done before anything else can happen.  There is no reward for doing what we all call their “responsibilities”; they are not tied to an allowance and we don’t praise the kids overmuch for taking care of them all.  At times we certainly note that they are doing great taking care of things all by themselves, but the expectation is clear: this is what you do as part of the family, and we expect you to do it all the time, just as we adults do the grocery shopping, prepare meals, and clean.  Sure enough, from Day One, there have been no problems. Of course, on occasion someone gets distracted and starts playing while the clock ticks down towards the school day, but rather than harping on him to brush his teeth, we can simply ask him to check his responsibility list and we all move on.

For Baxter, our older son, this is really no big deal.  He could’ve done it a lot sooner, but we didn’t think of it; probably, in part, this is because Lyle wasn’t on the same schedule and things weren’t as streamlined as they are this year.  Baxter was previously in the habit of sitting down with a Harry Potter book in between every step of his morning routine, which was highly irritating to us as we raced through the morning, but this has completely stopped.  I thought it might be a stretch for Lyle to follow these routines, but he loves taking care of things independently.  This week he’s even getting out a crayon and running back to the fridge to enthusiastically check jobs off as he does them, just for fun.  Yesterday he recited the entire 11-step morning responsibility list to me during breakfast, so proud that he knew the routine by heart.  He clearly feels like a very big kid to be doing these things and going to kindergarten, and he’s embraced all of it.  For us, it has taken much stress out of our mornings in particular, not to have to call out reminders and stay on top of everything the kids are doing.  It allows us to get ready for work and get everyone out the door on time, which is happening every day as a matter of course instead of being a rare occurrence.

I can easily imagine a parent thinking, This is way too structured for me – I like more spontaneity and fun in my home! I might lean towards that philosophy myself if I hadn’t tried it.  To this parent, I want to say that by turning these uninspired (but necessary) chores into smoothly sequenced routines, we get the “work” done faster and there is little to no discussion or arguing about them. This leaves a whole lot more time for fun and games around here – and we’re all in better moods, too.

I believe firmly that by putting these expectations into place as early as a child is ready – and by keeping the responsibilities reasonable and appropriate for each child’s developmental level – it’s possible to instill a sense of pride and a certain level of habitual independence in a child than what can be achieved if started later on.

Life Rediscovery


I’ve been half-joking lately that I feel a bit like I’ve enrolled in a Life Recovery program here. But, in fact, maybe it’s more of a Life Rediscovery, when it comes down to it.  It’s sort of like a giant time out.  I’ve been able to pause, catch my breath, take stock of the last few years and decide how to move forward.

And I love it; surprising things are coming out of this time already.

As many of you know, I’ve cut back on my regular work hours in order to make time for consulting work, and although I’ve had some jobs come in, many things haven’t panned out, at least not yet.  In strictly financial terms, this is not so great, and I can’t afford to work so little long-term, but it’ll be okay for a few months.

On the personal front, it’s fantastic.

We moved here three-and-a-half years ago from San Francisco with two very young kids and I hit the ground running, quickly ramping up and working more hours than I’d ever worked before.  We got settled in a rental house only to have it put on the market the next week, pushing us to buy our first home and move into it just 9 months after the cross-country move.  It’s been an endless cycle of working and parenting and settling in, and because we rapidly found great friends and organizations to be part of, we were always busy.  It was, as they say, all good. Really good.

But I can’t emphasize enough how wonderful it is to have a little time this fall to simply breathe.  Yes, I’m still seeing some clients and running my practice, with all that entails.  But the kids are both in school and are calm and happy much of the time when they’re home now.  They’re older and independent.  I took myself off all committees and the Condo Board. I’m able to volunteer at the kids’ school for the first time ever, as a room parent in Lyle’s kindergarten class.  I’m cooking our meals and baking yummy autumnal treats, listening to music, and seeing friends – even in the middle of the day sometimes. I’m reading blogs again, ones I haven’t visited in a long while, and discovering new voices as well.

Spending more time in my house has led to all sorts of small repairs and cosmetic changes that were on the periphery of my awareness for a long time; I have just recently unpacked boxes left over from California. One by one, I’m working on the closets and storage areas, getting rid of boxes and bags of junk taking up space here. Yesterday I had a professional organizer come over to give me ideas about how to use space in our home office more efficiently, now that I’m in it a lot more. I’ve even taken up the violin again, more than 20 years after putting it aside.  Lyle is going to start playing and I’m going to relearn alongside him; I’m finding enormous pleasure in picking it up in the middle of the afternoon or at night when the kids are in bed and working on my old Suzuki tunes from childhood again.  Without my modified work schedule this year, there’s no way we’d have time for the violin lessons or the flute lessons Baxter is starting next week.  I know: I tried to fit music into our lives last year and it was impossible.

I hope and expect the consulting jobs to pick up more soon.  If they don’t, I’ll go back to taking new clients of my own at work this winter.  But even when I’m working more again, I am committed to making sure I continue to have the flexibility and freedom to schedule jobs so that they work within my new life here, the life in which I have more down time with my family and friends and for baking and making music and writing and thinking and breathing and being.

And Now for Something a Little Lighter

Baxter’s Halloween Ninja costume arrived this week.  (My, aren’t we organized?)

He tried it on immediately and posed like this:


…which required me to snap a quick picture with my phone.

I forwarded it to Matt, who shot back an email that has kept me laughing for two days now:

World’s Whitest Ninja:

Attacks with wireframe glasses and flute.

Scared of the basement.

Reads on the can.

Winding Down: The Hospital

DSC_4417I want to write about the time I spent with my grandmother in the hospital last week, but I don’t know how to do it.  I start and restart and am at a loss. Because you know what it was like? I’ll tell you: it was depressing.  It was simply not right.

When you see someone important to you, particularly a person who took such good care of you when you were growing up – a person who made it her business to generously take care of everyone in her family, neighborhood, and even city through her volunteer work – being cared for so poorly, it’s hard to know what to say.  She’s not in what would be considered a bad hospital, by most standards.  I don’t think that anything has happened to her that would be all that unique to the hospital setting in general these days.  And yet I came away knowing that the care she has been receiving is substandard and disheartening.

Think for a moment about being legally blind.  Imagine how it must feel to have your food tray dropped off near your bed (but out of reach) without a single word, so that you don’t even know it’s arrived and by the time you discover it the entire meal (already rather gross) is stone cold? Or, in the best case scenario, the tray is placed carefully in front of you with someone mentioning what’s on it before leaving, but you couldn’t begin to know where on the tray each item is located or how to open the containers.  Imagine now that you did manage to pull the top off the entree and can smell turkey, mashed potatoes, and gravy, and it smells okay to you – but your bed isn’t propped up enough to really be able to eat safely.  And how are you going to cut the turkey, if you can even find it with your fork?  Do you have a knife somewhere?  Just think, as a blind woman, how hard you’d have to work to eat that food that you don’t even like, when you are feeling so ill.  And yet over and over, the hospital staff drop it off and leave the room, expecting you to do just that.

Now imagine that you are in the hospital because you hurt your leg very badly and, being on blood thinner, you experienced horrible bleeding and are at risk of infection.  It’s healing slowly and when you were in rehab you passed out each time you exerted yourself so you’ve been sent back to the hospital.  Now they’re watching your heart rate and your blood pressure, trying to stabilize both.  You know they’ve taken you off the blood thinner while your leg heals and you are supposed to be up and moving around for the sake of your circulation.  Doctor’s orders.

But no one bothers to help you out of bed.  For days.  “We’re short-staffed,” they say, when they stop long enough to answer honestly.  Most of the time, they promise to go get another nurse to help and never come back.  Your doctor requests a specific chair but the nurses insist they’re all being used.  They tell you that “the minute” one is available, it’s all yours.  The next day, still no chair.  But your granddaughter spots one out in the hallway on her way in and asks a nurse.  And then another and another until she has requested it from every nurse on the floor.  It takes four hours before it finds its way into your room at five in the evening, but no one stops to help you out of bed and into that chair that day.

The next day, when your granddaughter arrives, the chair she fought so hard for is out in the hallway, abandoned until she kicks up enough of a fuss to get it moved back in again. Days later, it requires the arrival of the Physical Therapist to take the time to move you into the chair.  You’re so grateful to her that you tear up and beg her to come back tomorrow – telling her that you feel human for the first time all week – and yet you are informed that since you’re going to go back to rehab from the hospital eventually, you don’t qualify for more than this one PT visit.

And, wouldn’t you know it, that night you begin to have small strokes.  Would they have started at some point anyway?  Maybe.  Can we say they were exacerbated by lying in a bed for a week without movement or PT exercises when not on blood thinner?  I’d say so.

The trouble is, these days an advocate is required in the hospital.  Someone to push for information, to request that the doctors talk to each other, explain things to the patient, and to get that damn chair into the room and get the patient into it.  To notice that her mouth and lips are bone dry and make sure she gets water and chapstick often, to trim her long fingernails, and to puff up her hair a bit; after all, it hasn’t been washed in ages.  To tell the doctor that she’s choking on thin liquids and needs a swallow study immediately – because no one watches her eat or drink, even though they think she had a stroke the night before.  To find the button she can’t see that props up her bed, tell her that her tea is at 1 o’clock and the mashed potatoes are at 7 o’clock, and to cut her turkey and hold the fork out for her to feed herself.  Who has time for such things?  Not the nursing staff at this hospital, that’s for sure.

But when the advocating granddaughter sees that her grandfather is looking exhausted and it’s getting close to dinner time, the patient is left alone until morning.  The nights are long and sleep constantly disrupted, the care is worse during the night, and there is no way for them to get back until lunchtime the next day, at the rate the elderly man moves. And so you survive the experience somehow, lying in your bed, minute by minute, until someone arrives to keep you company and advocate for you again.

In the end, one is left with the distinct feeling that while medication is adjusted and monitors are watched, the patient loses ground day by day in terms of strength and morale, which leads to further complications and longer hospital stays.

The fact that we, as a nation, are fighting so hard for everyone to have the privilege of this experience is just too damn depressing for me to think about tonight.