Thursday, March 22, 2012


This is the longest space between posts yet. There are a couple of reasons for long spaces between posts:

1. We're happy, regulated, and not in train wreck mode. (Who wants to read about The Orient Express with no murder -- just a bunch of prosperous, well-dressed folks eating caviar and gliding across the landscape in all their poshness?)

2. We HAVE been in train wreck mode and therefore writing is too hard. Sometimes sheer confusion -- or exhaustion -- keeps me silent.

The past week we've been a bit of both. We were worried about Saskia's health, and worried about Benjy's school placement. We've had half-answers and full answers. some we like, some we don't.

The worst first: Saskia.The better part of the past 24 hours I was supremely happy. I had no further information about Saskia's lupus-like symptoms (lupus can take years to diagnose) but we'd gotten her in to a nurse practitioner at a dermatology practice, because the lesions she had developed on her arms, legs, trunk and face over the past six weeks had gotten worse and were multiplying.

Her PCP did not know what they were. The rheumatologist said they did not look lupus-like. So off we went to the dermatologist. (If you wait a few weeks I'll be writing about her other ologist -- the hematologist. Isn't life grand!)

I'm going to start abbreviating because I'm sick of writing out these names. The derm ruled out our greatest fear -- DO WE HAVE BEDBUGS????? YUUUUCK!!!!!! -- and said it WAS atypical for a lupus rash but she would test for that. The other thing she was going to test for was something called PLEVA.


I Googled pleva. I got scared. I exxed out. But yesterday (hence my 24 hours of happiness) the NP called to say, yes it IS pleva, but it's acute pleva as opposed to chronic, and what that means is, after a month or two it will be gone forever.

I did a little happy dance. Because we can live with two months, right?

So I kept on feeling good, had an enjoyable writing group meeting, and when Lars got home at 11, the two of us took the hellacious one for a walk. That's when the somewhat less than 24 hours of happiness leached away. Because Lars said, "Did you actually READ those articles on pleva? Because it doesn't seem to be as benign as the NP said."


I decided to wait until this morning to delve more deeply into the charming subject of acute pleva. And someone must be lying, because the story I got from the NP is incompatible with what I read on line, which is that you can be stuck with these lesions FOREVER. The pictures made me gag. Saskia's are not so offensive -- it looks a bit like she has measles -- and not so plentiful. But she is a FOURTEEN-YEAR-OLD GIRL! She is profoundly mortified by her face and body right now. the other day when it was almost 80 degrees out she wore a sweatshirt all day in her un-airconditioned school. she came out totally dehydrated.

My poor, poor girl. I would give anything to take this from her. I wish it were me -- what would it matter? but for HER? And if she inherited my breast cancer gene she'll have a whole lot of impossible, maybe life-changing decisions to make when she's a young woman, I hope pleva and all her other lupus-y shit is enough. Whoever makes these decisions (her genes, I guess) had better have some compassion.

It's hard not to wallow is despair right about now, I look at other families whose kids don't seem to have any  medical or psychiatric issues, and I think, WHY US?? Of course, I realize there are hidden issues for just about everyone. but still, we are surrounded by healthy, happy kids here in our town -- and our kids have been stricken so hard. It is NOT fair. (And now I'm hearing the voice of my Dad saying, "Well, life is not fair, Anna." Wise words from Dad, but they do not really help -- not then, not now.

But I DO have some good news! My fears that our school district was going to yank Benjy from the Joy School, ostensibly in his own interest but really because it is extremely expensive? Those were UNFOUNDED. The district is behind us. I suppose that could change at any time, but for now we're good.

SO: Somehow I have to keep slogging along. We all do. If anyone has any ideas for hiding dark lesions on a girl's legs, arms and face, I would love to hear them.

Today, at least, she went out in a skirt and short sleeved shirt -- even if she did insist on wearing pantyhose.

THAT, Readers, is progress.

Thursday, March 15, 2012

Anxiety -- Mine, not Benjy's

Today, I'm anxious. About both my kids.

Tomorrow Saskia and I go to the rheumatologist. I am hoping, after a year or more of observation, we will be closer to knowing if she has an autoimmune disease. Not because I want that for her -- God no -- but because knowing is better than waiting to know. At least then you can move forward. So poor Saskia will have to deal with the indignity of being examined by a rather handsome (and old -- my God he must be FORTY!!!!!!!) male doctor, who does not appear to be gay, as does her hematologist. (Gayness makes examinations a bit easier if they include disrobing.) Then there'll be lots of blood drawn, which she hates, and then we will wait a few weeks to see if her numbers have gone up or stayed still.

Probably we will be no better informed tomorrow than we are today.

I wish Saskia were all I had to worry about. But now I am concerned about the intentions of our school district. They seem to have something up their metaphorical sleeve, and I don't like it. First there was the IEP (received around 2 months after our meeting!) with errors (or, "errors," as the case may be) on the placement page. These errors could mean the difference between Ben staying where he is, at the Joy School, and being shunted off to another placement (a collaborative or in-district will be over my dead body, so if a couple months go by and you don't hear from me you'll know why).

Then, an email today from an administrator asking for a meeting about placement -- just her and me, it sounds like -- which raises a red flag in my mind. No meetings will happen without our advocate, the divine Laurel C., and Lars by my side -- and ideally, the rest of the team.

Wondering what the heck is going on with these people, what they intend for Benjy, is FREAKING ME OUT. Because, for the first time since he started school at age three, Benjy is relaxed, happy, and learning. The other day I picked him up and he was glowing, just glowing. He piled into the car and said, "I'm happy, Mom! I love my school."

Just thinking of it makes me cry. If that Chinese woman whose piece about being The Tiger Mom I read in the Wall Street Journal thinks she's tough, just wait until someone tries messing with my boy. I will be AS TOUGH AS A WOLVERINE. I mean it.

Meantime I am supposed to be writing -- I have a self-imposed deadline because a mag is waiting for a piece from me -- and all I can do it stare at the fish tank. (Ick. It needs to be cleaned.) I am anxious, and I am distracted. Maybe I've stepped into Benjy's life. (Not for the first time -- I know where his issues come from.)

Well, tomorrow is rheumatology day. Maybe by tomorrow night well be a few steps closer to clarity, and I'll be able to relax a little.

Tuesday, March 13, 2012

Poor Saskia

Okay, Peoples, I have officially gone over the crunchy-granola edge. I've decided to make my own shampoo, conditioner, and body wash. This is on top of the homemade household cleaners and laundry detergent I am now using.

A year ago I'd have laughed uproariously if you'd told me this was in my future.

So I had the kids in the car and I announced that we'd soon be using homemade shampoo and stuff.

Saskia screamed.

"What's wrong?" I cried, imagining a stray pin left somehow on the front passenger seat and insinuating itself into her derriere.

She drew herself up and said with a chilly dignity, "My personal hygiene is NOT NEGOTIABLE."

I laughed. Benjy said, "Come on, man. It's just shampoo."

I said, "It's wholesome. Forget the cost savings. You use my shampoo and you won't get cancer. It'll be awesome." I had just heard an episode of On Point about chemicals in household items, which scared the bejesus out of me.

Saskia rolled her eyes and flumped back in her seat. "You suck," she muttered.

"You too," I said, "and you're gonna use my shampoo if it's the last thing you do."

In case you think she's a total teenage b****, she's off tutoring special needs kids as we speak. She's a good egg, just a bit rigid.

She comes by it honestly...Lars is about as rigid as they come. He'll LOVE my homemade personal care items, though; he'll just dilute them with water to squeeze a few extra servings out of them. He's a bigger cheapskate even than I am.

Wednesday, March 7, 2012

Green Cleaning

Remember I told you that in the interest of frugality I would be henceforth making my own cleaning supplies? Well, I did. And today my house cleaner is using them. Two thumbs up for cheapness AND green living!

Here is what we're using:

All purpose cleaner: simply vinegar, in a spray bottle. If you want you can dilute with water.

Tub and tile cleaner: one cup baking soda and several squirts of liquid dish soap, until you have a creamy, frosting-like consistency.

Window cleaner: Two cups water, 1/4 tsp liquid dish soap, 2 tbsp vinegar, in a spray bottle.

I use white distilled vinegar, just fyi. I bought a huge jug of it for a couple bucks.

I am also going to make my own laundry detergent out of ivory soap (grated), 20 mule team borax, and washing soda (ever hear of that?). I'll let you know how it works out.

New Worries

Having a child with a disability can be heartbreaking. And terribly difficult. Having two? Or three? I can't imagine. Sometimes I try to, and it's a good perspective builder. Our lives are hard, but they could be harder.

Sometimes all I have to do is think of my parents, who lost a child. How on earth can you survive that? They did, though, even if they thought they wouldn't. They epitomize strength, grace, and optimism. I love and admire them so much. And I have always been grateful that cancer is not one of the things we've had to confront -- not yet, anyway.

But now we may be joining the ranks of people with two sick kids. Because it's looking increasingly likely that something is wrong with Saskia. For the past year or so she's been under medical investigation. There are signs of an autoimmune disease like lupus. There are also signs of a hematological disease. Those signs are still ambiguous. We may not have a definitive diagnosis for another year or more. And I am scared to death.

The visits to PCP and specialists have begun again in earnest after six months' reprieve. I am trying hard to avoid Google. Trying hard not to imagine the effects steroids would have on Saskia if she has lupus and has to take them. I'm reading the headline Nick Cannon says, 'Lupus is eating my kidneys" and thinking, Shit.

But then, there are entire towns in the south and mid-west that have been wiped off the map. Entire families have died, sucked up into a deadly maelstrom of wind and debris. What we have, we can live with. I think.

We have two people to help us on this journey -- they've helped us through all our journeys -- who have lived through any parent's worst nightmare and come out of it whole. They'll get us through -- won't you, mom and dad?

Thursday, March 1, 2012

Making Ends Meet

A work opportunity for the fall has just presented itself to me -- nothing big, but bigger that the $0 I am currently bringing in -- and for a very few minutes I considered it.

Then I thought: what happens if the fall brings another crisis?

The shorter days tend to cause Benjy heightened depression and anxiety. He misses school, or goes in late, because I can't get him to raise his head and face the world. He wants to hurt himself, or to end his life. At least, he has in each of the past several autumns. It's not limited to the shorter days -- last spring he was a wreck too -- but it begins with them.

So a job starting in September would be a disaster waiting to happen.

Am I resentful? No, not really. More like resigned. These are the cards I drew. My sister, who died at 36, drew worse ones. And as I've said before, I like not working. Until I get bored, or tired of being poor -- poorer, that is -- I'll just carry on taking care of family and household, putting out fires, and writing when I can.

So, how do we manage on what is, for the town where we live, a SMALL yearly income? I've been thinking about that recently. We've tightened our belts for sure, but in some areas we are actually spending more.

Belt tightening:

Food -- we NEVER get take-out or go out to eat anymore. I look for what's on sale. I only buy store brands (when possible). Sometimes, it's frozen rather than fresh. (Veggies and even meat. You can get frozen salmon fillets for about $1.99 a pound -- and they're frozen fresh, so they're fine. Frozen chicken breasts have been more hit or miss -- but also cheap.) Beans, people. I have a GREAT vegetarian chili recipe! Pasta is out right now because I am going the low carb route -- but in general it's a cheap way to eat if you can find ways to keep it interesting.

Entertainment -- What??

Clothes -- Savers, baby! On a generous day, Target.

Household items -- Craigslist is my first stop. Also good: Needham "transfer station" (Read: dump). They have a take-it-or-leave-it area. You can get some good stuff there. We have friends who have furnished their entire house from the dump. No kidding. There's a Family Dollar store near Benjy's fencing club, and I am going to check it out on Saturday. And good old TJ Maxx has good prices on housewares ($6.99 tablecloth, anyone?) and things like coffee (fancy brands you never heard of for 4 bucks) -- not to mention the coolest, poshest soaps and toiletries for a steal.

Areas where we are spending more (or the same as when I was working):

House cleaning -- Well, we still have someone cleaning our house twice a month. Terrible, I know -- and we may have to cease and desist. That'll be a last resort, though, as I DESPISE cleaning my house.

Cell phones -- We said ta-ta to our old dumb phones and got a couple of iPhones (last year's 3Gs, for $0.99 each at AT&T -- but the data plan costs more by about $40 per month).

Cable -- We were possibly the last folks in America to cast off our old TV and buy an HDTV (although it WAS refurbished. Still pricey). Now, cable costs us more.

Tutoring -- Saskia just started with a math tutor. That's costing us $200 per month. Ouch!

Fencing -- Benjy has FINALLY found a sport he likes and can be successful at. And is getting regular exercise beyond pushing a mouse around. How can I say no. Damage: $125 per month.

Most months we only break even, but we sure do feel virtuous. We're aware of where our money is going for the first time ever. We even keep a monthly expense spreadsheet. And have made -- and adhere to -- a budget.

(Wait -- have our bodies been colonized by aliens?? Responsible, financially savvy aliens??).

And so far we've not bounced any checks! The jury is out on whether we really will make it, but at this moment, my money's on us.