Epistle: To S. on the Occasion of Her Seventh Birthday

Oh S.

It’s hard to believe you are only seven – after all you are in the second grade, and you have, to hear you tell it, already suffered a lifetime’s worth of indignities.

And yet, it’s impossible to believe that you are already seven. Wasn’t it just a few days ago that I was walking around the apartment muttering about your refusal to make your entrance into the world?

You came into the world inside an intact bag of waters. Daddy says it was like unwrapping a present, peeling back the sac to reveal you inside. And once you emerged, you began screaming, and you didn’t stop for six months.

You have always been sensitive. Everything matters. You feel things so deeply. You can burst into tears or smiles and laughter with precious little provocation.

All year long, you count the days until your birthday. In the last few weeks, the excitement has been at fever pitch. “I can’t possibly practice piano,” you announce. “My birthday is in two weeks and four days.”

“I get to pick what we watch,” you tell your sister. “My birthday is in one week.”

“We should go out for dinner today. My birthday is on Thursday.”

You professed an intense desire to eat at the overpriced kosher grill in town. “What are you planning to order?” I asked you. You thought about it and said, “Well, cake for dessert. That’s for sure. It’s my birthday.”

“Yes, but before the cake, what will you eat?”

“I don’t know. The usual. A hot dog.”

Bear in mind, S., that you said this while eating hot dogs for dinner last night, after you had also enjoyed hot dogs for lunch at school. I say this not to excuse the fact that we will not be going out for dinner tonight, but merely to remind you that you were not, in fact, totally deprived as a child, though the following might make you think differently.

After you fell asleep last night, we opened the package from your uncle and scattered four Webkinz on your bed for you to discover. We set out the earrings from your aunt for you to find at breakfast. And you were quick to explain that your uncle had actually purchased one Webkinz and three small Webkins or KidKinz or whatever they are, but that you did not, in fact, receive four Webkinz. And then after you opened the earrings and the box of five or six gifts from your grandparents, you looked at us expectantly.

“That’s it?”

“Remember the bike you got on Sunday? Remember how we said that was for your birthday?”

“But that was SUNDAY. Today is my BIRTHDAY.”

Lest we forget.

But true to form, within seconds you were joyful once more, planning how you would tell everyone in school about your gifts and your birthday and how great life is.



You are amazing. The way you play the piano, the way you do math in your head, the way you ask questions and acquire knowledge, the way you love. The way you announce every night at bedtime, “One of you has to come up and tuck us in.” The way you still sneak down to our room and crawl in the bed once in a while, and the way you still ask to sleep in our bed almost every night. The way you ask Baby J. to sleep in your bed, instead of with your sister.

Only seven. Already seven. And we love you so much.

Love,
Mommy

Better. So Much Better.

It’s kind of amazing how you can feel the very minute the meds saturate your blood stream or your brain chemistry or whatever the hell it is they do.

On February 13, I saw a new doctor who switched me from Zoloft to Wellbutrin, after a long discussion, in an attempt to alleviate my freaking annoying night sweats and also because Wellbutrin often has the lovely side effect of weight loss.

I switched meds that day – there was no real point in tapering off my 50 mg of Zoloft. And I knew that it would take time for the Wellbutrin to take effect, but I was anticipating stress, because I take Zoloft for anxiety, right?

Well, apparently not. Apparently I took it for anxiety and depression, because as soon as it left my system, I was reduced to a blubbering mess. My previous post, for one example, and EVERY CONVERSATION I HAD, for another. My life was basically reduced to:

Friend: Hey, WG, you look great!

WG: [Bursts into tears]

Or

UPS Dude: Hi, can you sign here?

WG: Sign? Here? [Bursts into tears]

You can ask Mr. WG, who after observing me sobbing quietly sighed heavily and asked, “Is something wrong?”

WG: N-no. [sobs]

Mr. WG: Are you sure?

WG: Yes. I’m fi-fi-fine. [fresh tears]

Mr. WG: Then, why are you crying?

WG: [breaks down and leaves the room.]

Good times.

On Sunday I wrote a letter to the Financial Aid Committee at my kids’ school. The letter is to supplement my aid application, because they somehow omitted a checkbox on the form for Please indicate whether you have another child who will attend a special needs preschool that will cost you twice what you pay for the rest of your children here, as well as exorbitant private therapy costs. An oversight, I’m sure, but still. I wrote a KILLER letter, but I sobbed the whole way through it.

Monday morning, Mr. WG gave the letter to the business manager at the school, to pass on to the Financial Aid Committee. The business manager called me that morning. “I got your letter, and I read it,” he said. “Do you need more financial aid for the rest of this year?”

The question caught me off guard, and I stammered something about how we could continue to make do, perhaps by selling one of the children into slavery. No, I didn’t actually say that, but I implied that we could probably manage for the rest of this year one way or another. And he said, “Well, I’m opening the door for you. If you need more aid for the rest of this year, you tell me, and I’ll make it happen.”

We continued to speak about how much it sucks to have a kid with special needs, and I did not burst into tears. And when I told Mr. WG, and then later a friend I saw, about the conversation, I still did not cry. And yesterday at D’s session with Mrs. Block, I talked to her, and once more, I did not cry. And today, even though the checking account has $400 till Friday and even though I somehow totally screwed up one of the credit card bills and now instead of owing $3600 at 0% for 12 months, I owe $3750 at 29.99% like, immediately, and even though the taxes are finally finished and I owe $2k in April, I am okay.

And that, my friends, is the power of modern medicine.

A Little Look Inside My Head

On Thursday, I drove D. to therapy and sat in the waiting room, sorting through my box of paperwork, adding things to my to-do list. In the chair next to mine was a woman I’ve seen there many times.

“Is your son with SuperSpeechTherapist right now?” she asked, and when I said that he was she asked when his session ended.

“At 1:30 she hands him off to Mrs. Block,” I said.

“Oh, great. I really need to grab her for a few minutes. I want to see if she can take over speech for us. I’m freaking out. I just found out that my daughter’s speech therapist is moving away the same week the OT is going out on maternity leave.”

“Yikes.”

“I know, right?”

“But don’t forget that she’s also going on maternity leave for the summer.”

“No, that’s fine. I’m just going to be without therapy in two weeks. Not a good place to be.”

“Definitely not.”

“Well, SST is terrific. She’s been really great with D.”

“Yeah, from what I’ve seen she’s amazing. I just can’t deal with all this transition. And it’s right before our visiting day here.”

“Oh. Well, we failed our visit last year.”

“So did we!”

“And I swear, I’m going to hang myself if we fail again this year. I’ve looked, and there’s nowhere else to send my kid. I just don’t know what I’ll do.”

“I know, right? I’m just barely keeping it together these days, and that would just push me right over the edge.”

“Totally. Yeah, Someone told me recently that ‘God only gives you what you can handle’ and—“

“That’s bullshit!”

“That’s exactly what I said! I mean, LOOK at me! NOT HANDLING.”

“You know what it is?” she said thoughtfully. “What choice do we have? I mean, we can’t just abandon them, so we HAVE to get up in the morning and put on a brave face in public, but at home? COME ON.”

“I KNOW. I’m a freaking MESS at home.”

“Yeah, I read something once about grief, about how the better people LOOK like they’re doing, the worse off they actually are.”

“I can believe that,” I said.

And the more I think about it, the more true I realize it is. Look, if I left the house with unbrushed hair, mismatched shoes, and dirty clothes, people would stare, and they would KNOW that I am not handling it well. I don’t know how they would react, but I’m pretty sure that’s the part where you find out who your friends are.

The ones who are there for the long haul show up at your house with food, spend six hours cleaning the cereal off the side of your kitchen island and another two hours just letting you cry. The ones who really love you take your special needs kid for the day and tell you, “We’ll be fine. Just take a nap.”

And probably the reason I keep it together in public is that I suspect that most of my friends, while they like me a lot, might not love me that much. They’re probably the kind who would look a little embarrassed to see me such a mess. “Is everything OK?” they’d ask, but they’d ask it with car keys in hand and an over-the-shoulder glance meant to imply business, meant to inspire me to laugh it off as a bad morning.

Don’t get me wrong. I don’t think my friends are bad people. I think they are human, and I think in a sense we all see what we want to see. I think that if I were actually dying and in the hospital, they would all be there for me and my family. But that’s because dying is a short-term thing. This, my life, is long-term. And really, who wants to take on that burden? Who wants to be the person who says, “Listen, the third Tuesday of the month is mine. I’ll take D. that day. Every month, for as long as you need it, so that every month you know that you’ve got that day.”

And no one wants to ask me the really hard questions because the answers are really hard to hear. What are my long-term plans for D? Who knows? Yes, right now we have a college fund (although the 529 people did not appreciate that our last contribution consisted of several partially eaten lollipops, a piece of gum, and thirty-seven cents in pennies), but it may one day be more of his long-term care fund. No one really wants to think about the fact that D. may always be different, always need help.

No one really wants to hear YET AGAIN that every financial decision we make comes down to, “Do we do this, or do we pay for X hours of therapy?” No one wants to know that giving up my housekeeper to pay for speech was one of the hardest things I’ve ever done and that there isn’t ONE DAY that I don’t resent that I’m doing my own laundry and washing the damn floors AGAIN.

The camp forms came out the other day, and we figured out that if we send the boys until 2 and the girls until 4, it’ll cost us $6,000. But then, one of my friends asked me last night, “Will you need to have a shadow for D.?” And it was like a truck hit me, because I had completely forgotten that NOTHING is easy, and that the real cost would wind up being more like $8000, and camp just became a luxury we can’t afford.

So I get dressed in my funny t-shirts and my denim skirts with funky embroidery and my tall boots, and I laugh when people ask if we’re going away for winter break or summer vacation and I tell them, “It’s all good,” when they ask how I am. And I hide in the closet in my office so my husband won’t hear me crying and I make jokes about the chaos when people call or stop by, and I let everyone think that I am handling things.

Maybe I underestimate my friends. But I don’t really think I’m brave enough to find out.

I was at a meal recently when someone said, "My baby is so easy because God only gives you what you can handle."

I snorted and said, "Yeah, I used to believe that. It's totally not true. I don't know who the hell God thought He was dealing with, but I am completely not equipped."

Of course, everyone at the table protested. "You do such an amazing job. You are such a fantastic mother. D. is so lucky to have you."

Bullshit.

Yes, OK, there are a lot of things we do right, because we don't really have a choice. We forgot to ask for the gift receipt when we got D., and they have really cracked down on the return policy at the store. So, we're kind of stuck, and since it's generally frowned upon to just leave your child in a ditch and walk away whistling, this is where we are.

I don't think we can "handle" D. I think we get by, we do the best we can, perhaps at the expense of our other children, perhaps at the expense of ourselves, perhaps at the expense of us, of our marriage. (Oh, stop worrying, we're fine. We're not even fighting. I'm speaking in generalities right now.)

Sometimes I think that D. does well in spite of us. In spite of our laziness, our inertia, our indecisiveness, our lack of advanced degrees in special education, our cluelessness.

When you have a child with special needs, it is assumed that you have read - and subscribe to the theory presented in - Emily Perl Kingsley's "Welcome to Holland." It's a lovely essay with some beautiful sentiments, and it works for a lot of people.

The first time I read the essay was long before D. was born. It might even have been before Z. was born, and I remember thinking how insightful and accurate it was.

(Yes, you may feel free to throw things at me.)

When D. was in the NICU, I read the essay to Mr. WG, and he loved it. About a year ago, I read it to my parents, and they liked it, too. And there are days when it still makes me tear up a little (although, frankly, these days a handful of crumbs on my freshly washed floor can bring me to tears, so whatever), but there are more days when it irritates me.

And it turns out that I'm not the only one.

I mentioned my feelings of gracelessness to a friend who said, “I can’t believe you really think that. You’re the example we give other people who have kids with special needs.”

That’s kind of a terrifying thought. And when I try to tell people that I have no idea what I’m doing, they look at me funny. But that’s because they’re not there to see everything that I see. Like yesterday, when I took D. to his first soccer class for kids with disabilities.

Now, all things considered, I guess D. did pretty well. I mean, he didn’t scream or throw a fit. He was pretty happy to get his own soccer ball. And at the very beginning, he went and sat in a circle with all the other kids. Of course, I immediately whipped out my phone to take a picture of D. acting like all the other kids, because I so desperately crave those moments, but by the time I lifted my phone to shoot the picture, all the kids were heading over to stand on the white line, and D. was still sitting in the circle.

So I went to help him over to the white line, but he wasn’t interested in that or in playing the red light, green light game, and we spent the next forty minutes trying to get him to participate even a tiny, tiny bit. Unsuccessfully. And when I left with him, a little bit early, I was very careful not to make eye contact with anyone else, because I didn’t want to see That Look that says, He’ll do better next time. You’re doing such a great job!

I think I hate that sentiment so much because it feels like a crappy consolation prize.

Thoughts on A Thursday Morning

I’m never quite sure how other people think of me. When I hear someone say, “My best friend says…” I wonder if anyone ever thinks of me that way, as a best friend. I guess it doesn’t really matter, because I have a small circle of good friends, and I have someone who I think of as my best friend, but I don’t actually know if she feels the same way.

I sometimes wonder what people say about me to their husbands or to their other friends. I wouldn’t be surprised to hear that they think I am judgmental, picky, obnoxious, full of myself – I think I am a little bit of all of these things.

I spend a lot of time thinking about people I only knew for a brief period of time in college or in Israel. I wonder if those people even remember me. Some, I’m sure, don’t. If you asked, they’d furrow their brows, squint off into the distance, and shake their heads. “WG? No, doesn’t ring a bell.” Others might smile and nod and then move on, and maybe one or two would say that they often wonder what became of me.

When I was in college, my sophomore year roommate and I served as TAs in a particularly awful humanities class. The students in our section met with us weekly. One of the students, BitterDude, hated us on sight. He was openly, though mildly, disdainful of anything we said or did. We didn’t really care, and the semester, thankfully, ended. At the end of my sophomore year, I moved to Israel. In those last few weeks of school, I think I felt pretty secure. I knew what I was doing, and it showed, for the most part. So when one morning I found myself in an almost empty cafeteria for breakfast, I smiled at BitterDude as he passed by.

He sat opposite me and we spoke pleasantly about our plans for next year. He would spend the year abroad in England. I told him I was moving to Israel to join the army. He was stunned. We talked over breakfast and at the end of the meal he said, “Good luck, WG. I’ll be thinking of you.”

About seven months after I arrived in Israel, I got a letter from him, postmarked London. I don’t have it anymore, and I don’t remember the whole thing, but it started off: “Dear WG, The last time I saw you, I told you that I would be thinking of you, and I have been.” He went on to profess strong feelings for me, and a sense of profound regret that he had been too wrapped up in himself to get to know me properly during our time together in college. He closed with lines from a poem describing setting two cups on a table in anticipation of a visitor, and he told me, “WG, I always have two cups on my table.”

OK, maybe it’s not as intense now, but my nineteen-year-old self was overwhelmed. And perhaps more frequently than I should, I find myself wondering if he still thinks of me. But for that letter, he would have passed from my consciousness completely. Because of that note, an airmail letter I don’t even have anymore, he stays in my mind, popping up to surprise me every so often.

Evaluations and Applications

Last week, I took D. for his second attempt at the public school evaluation. He had gone a week earlier with Mr. WG, and they returned after a scant 10 minutes because D. didn't want to do anything. Last week he was better, but we didn't get through everything we needed to. So when we were setting up the next appointment, I said it might be wise to try for the morning, rather than the afternoon. "How early do you start?" I asked.

"Seven."

"OK, we'll be here at seven," I said.

What can I say? It seemed like a good idea at the time. So today, Mr. WG got up at 5 am and was showered and dressed and WAY TOO AWAKE at 5:30. I staggered out of bed at around ten of 6, and by the time I made it into the kitchen, the girls were already playing on the computer, having eaten and dressed and all that. Baby J. was watching TV, and D, who normally wakes up at Waythehecktooearly o'clock, was still sleeping. But we made it to the appointment on time, and D. was actually pretty cooperative. And for most of the time, I didn't want to kill the public school people.

We still have to go back once more (also at 7 am) to finish up the eval, but the end is in sight.

In other news, I have nearly completed the new application for The School. And since I have called every other possible place here, The School had better admit D. this time. Or I'll... well, I'll be really sad.

In addition to the school application, I am working on financial aid applications for funding from several sources. I have to submit my current tax returns, so this morning I worked on finishing up the tax stuff to send off to the accountant. I really hate paperwork, so this is a real accomplishment.

My tax prep work involves many hours of Quicken, data entry, reviewing crap, hounding clients for 1099s, etc. Mr. WG has one job: log in to his Fedex account and arrange a pickup. So, guess who did her work and guess who is whining like a baby?

It wouldn't be Monday without a little drama

Last night, as Mr. WG and I watched the last few minutes of House far too late at night, Shadow texted me that she was sick and didn't think she'd make it to school today. This was Not Good, because the public school people were scheduled to visit and observe D. in school at 8 am this morning. I immediately texted SubShadow to ask if he could fill in. He replied that he'd be thrilled, but we'd have to clear it with MontessoriBitch.

Internet, I don't think you've met MontessoriBitch, but I think the name pretty much says it all. Basically, after Mr. WG and I hired SubShadow and everyone in the school saw how great he was, MontessoriBitch decided she would hire him to work as her assistant in the classroom. In the mornings. Precisely during the time we were using him. Fine, because Shadow came back, but we knew that SubShadow was a great sub. And we kind of thought everyone else knew that, too.

So anyway, I didn't have any contact information for MontessoriBitch, so I texted Rabbi InCharge, who replied that he couldn't force her to do anything, but he could encourage her. I wrote back that I wasn't asking him to force her, I was asking him to CONTACT her. But I was irritated that he was already trying to absolve himself of responsibility, because he is IN CHARGE.

This morning, we still hadn't heard from MontessoriBitch, but since Mr. WG is SubShadow's ride to school anyway, that was fine. Eventually, someone got ahold of MontessoriBitch, and she of course said that no, absolutely not, no way could SubShadow sub for Shadow. It was critically important that he be in her classroom. SOMEONE needs to make photocpies and feed mealworms to the animals and call parents. (Lest you think I joke, I assure you that I do not. SubShadow describes his duties as the aforementioned specifically, and more generally, "anything MontessoriBitch doesn't want to do.")

Fortunately, Mr. WG did not back down. He went and got Rabbi InCharge and told him that D. needed SubShadow. And I guess he said it firmly enough that Rabbi InCharge decided he'd have to step and BE IN CHARGE, but it still left me irritated.

And then, just to make sure the day sucked completely, D's teacher called after the public school people left to tell me that D. had a perfectly lousy morning and refused to cooperate at all, and that the public school people want to reschedule for a day when Shadow is there. Yippee.