Girl Power?

I’m in my mid-forties, but my parents are not baby-boomers. They were born in the mid-1930’s, and missed that generation by at least a dozen years. My mother was in her late 30’s by the time she gave birth to me in 1971 and then my sister in 1972 (she’d already had my three older brothers in the sixties).

What I’m getting at with these numbers is that they were not particularly progressive in their thinking. My mother completely missed the Sexual Revolution and the Women’s Lib movement. She was too busy raising her kids to pay attention to any of that. And as my sister and I grew up in the 1970’s and early 80’s, she naturally assumed that we would get married and have kids, just like she did. She never wanted anything else in her life, and she assumed we didn’t, either. Luckily, the culture we grew up in was starting to change, and we soaked up the idea that as girls, we had more options and basically could do whatever boys could do. I seem to remember having a t-shirt that said, “Whatever boys can do, girls can do better!” We didn’t necessarily feel hemmed in by traditional roles.

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When we announced to mom that we wanted to go to college, she was totally surprised and unprepared to assist us. It was all foreign to her; we were the first in our family to graduate high school, never mind have ambitions to go to college. We did most of the college thing by ourselves, not because our mom didn’t want to help, but because she just didn’t know how.

When Lilly was born eight years ago, I breathed a big sigh of relief: I didn’t have to worry about her doubting her abilities or ambitions because of her gender. This is the age of girl power, right? And I would be there every step of the way to support her and her dreams. I worried more that her spina bifida would sap her confidence in herself and make her believe she couldn’t do certain things.

Imagine my surprise at how wrong I was!

A few nights ago, my husband and I watched an NBC report on a new study showing how girls, starting at about age 6, believe that boys are smarter than they are. Apparently, up until age 5, girls will consistently choose their own gender when asked who is smarter. But in one year, that outcome changes dramatically. When shown a picture of a man and a woman and asked to point to who they think is smarter, the girls, aged 6 and up, always chose the man. Always. (The boys, no matter what age, always chose their own gender).

This was a bit alarming, and puzzling, too. How does that still happen?! I started to wonder if Lilly would do the same in that experiment. Nah, I thought. I’ve always tried to encourage in her the belief that there is no difference between boys and girls, that one isn’t smarter or better or more able than the other. And I tried to steer her away from the stereotypes: Don’t like dresses? Good, I didn’t either. Trucks and cars on your braces rather than rainbows? You got it. Don’t want kids? Plenty of time to change your mind, but it’s not required. For summer activities, we’ll do science experiments this week (you could be a scientist!) and baking next week (you could be a chef!). I thought I was doing a good job at this.

As it happens, the chance to test this came the very next morning after that eye-opening report. Lilly was watching one of her cooking shows, the Kid’s Baking Championship, and one of the kids competing was a 13 year old girl from Texas. As she introduced herself, she said that she liked “hunting, fishing, and shopping.”

“Hunting?” Lilly said, screwing up her face. “That’s for boys.”

Hmmm, I thought. Let’s have this conversation then.

“Girls can do whatever they want,” I said. “Even hunting.”

“No they can’t,” she replied.

“Oh, they can’t?” I asked her. I was beginning to get a sinking feeling.

“No.”

“But boys can do whatever they want?” I pursued, afraid of the answer.

“Yeah.” She said it like, Duh, mom.

Commence the breaking of my heart.

I should have pursued the conversation further, but I was so dumbfounded and kind of devastated, and I knew Lilly would just argue with me until she got upset, so I only reiterated, “Girls can do whatever they want,” and left it at that. For now.

As it happens, that Texas girl won the baking championship, out of lots of girls and boys. I hope that’s sinking in to her very capable brain, as much as the mixed messages kids are receiving in the media these days.

 

 

 

Friends

Lilly is, for all intents and purposes, an only child. She has three grown-up siblings, but she’s the only child in our house; because of that, she naturally gets the attention and laser-focused love of a singular.

Sometimes I feel bad that she doesn’t have at least one brother or sister to grow up and play with. Both my husband and I come from big families (we’re both the fourth of five kids), and so we had ready-made playmates on any given day (or ready-made tormentors). But Lilly has to rely on either a) herself, b) her parents or c) friends.

Most single kids become experts at entertaining themselves, and Lilly is no exception. Lately, I can put a few bowls of odds-and-ends ingredients in front of her (flour, oatmeal, stale nuts or chips, salt shakers we never use, old ginger powder and cinnamon, a cup of water) and she’s happy for hours doing her “mixing”. We’ll ooh and aah over the sticky, goopy concoctions she makes.

Quite often, Mom and Dad are roped into games, puzzles, or blowing bubbles outside. On rainy days I’ll get out the Easy Bake Oven and we’ll make our tasty treats.

But there are times she just wants the company of other children. Other kids fascinate her. She spent her early years mostly around adults, so she’s comfortable with them and speaks to them more freely. And of course, grown-ups are more predictable and tend to cater to children. Kids, though–they’re exotic, mysterious creatures. You never know what they’re going to say or do. Oftentimes, she’s content just to watch them. She rarely approaches them herself; she waits for them to approach her.

And they do. Besides the fact that she’s a sweet, likable child and allows others to lead, there’s something about Lilly that draws kids to her. It might be the spina bifida–she’s different because she wears braces; she has to go to the nurse twice a day for some mysterious potty ritual; she walks a little differently. At this age, it’s okay to be different. It’s interesting. Kids are open and curious, never malevolent, as far as I know.

But in two years, that might change. In two years, she’ll be in fifth grade, and will have to leave her safe, inclusive elementary school. She will have to enter the portals of Hell: otherwise known as Middle School. It’s when kids suddenly turn into little monsters and devour each other, dividing into the strong and the weak, the cool and the uncool.

It’s a fire we all have to pass through, but I’d rather re-live it myself than witness my daughter go through it. It’s a whole different world: bigger, more confusing, with less safety nets. You have to find your own way. And it hurts.

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I dread this period more than anything I can think of, remembering my own awkward, bumpy path, the sudden, inexplicable betrayals, the cruelty I witnessed or sometimes suffered through. And I didn’t have a disability, this extra thing that makes you different. I can’t imagine navigating this pre-pubescent gauntlet of conformity with something that makes you stand out. She has no idea what’s coming, and I’m trying not to hyperventilate with anxiety (two years in advance!)

Maybe it won’t be so bad.

Yeah, and maybe sticking needles into your eyeballs won’t hurt, either.

So anyway, I’ve hung my hopes on Lilly having a strong cadre of friends as she enters Middle School, a posse of kindred spirits she can feel a part of that might protect her from the worst parts of this brave (awful) new world (something I, in my perverse social awkwardness, never really had). At least one good, close friend she can rely on, confide in, and hold onto during the storms.

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Hugging Holly at Lilly’s 8th birthday party.

Lilly has had a string of close friends since preschool. Holly was her bestie in preschool, but alas, she’s a year older and left for elementary school before she did–and to a different school than the one Lilly ended up going to. Contact since then has been sporadic. Annalise was often by her side in kindergarten, but they went to different first grade classrooms, and have since drifted apart a little. (I went to a small elementary school where there was only one class in each grade, and the same kids moved up to each grade together. You could count on seeing the same kids every year). Adrianna adored Lilly in first grade, but she moved away last summer.

This second half of second grade has been spent with Lila (pronounced like “Lilla”)–yes, Lilly and Lila. Apparently, they’re inseparable at school, and Lila lives in the same apartment complex that we do. It’s perfect–we planned getting the girls together a lot this summer. But as fate would have it, it seems Lila, too, will be moving away, to Florida, this September. Lilly can’t seem to catch a break in the best friend department.

Friends often come and go–that’s life. But I’m hoping that in the next couple of years, Lilly can find a good friend or two that she can hold hands with as she passes through the gates of Hell–I mean, Middle School.

 

What If

In my fiction writing, the question “What if?” is a great way to get stories going. What if an abused woman discovers she can leave her body? What if a young boy makes friends with the monsters in the basement? It serves a creative purpose, and it’s a fun question.

But in my real life, I’m getting a little tired of “What if”.

Lilly is part of the chorus group in her school and they participated in a concert last week that included the middle and high school chorus and bands. They were to sing two songs at the very beginning of the concert, and one last song together with all the groups at the end. She was excited and we looked forward to it, but I didn’t think too much about it beforehand.

The concert started at 7:00 pm and we made sure Lilly got there at 6:30 to assemble with her group in the cafeteria. My husband and I headed for the auditorium to wait for the concert to start.

As soon as I entered the auditorium, my stomach dropped. Up on the stage was a three-tiered platform that the singers would stand on during the concert. Of course there was. Why hadn’t I thought of that before? Lilly would have trouble getting up onto that thing. Did the music teacher know? Did Lilly even know about it? What if she had to climb up onto the top tier? Even if she got up there, she’d have to stand on that narrow strip ten feet off the floor, surrounded by fidgeting kids, for at least ten minutes. What if someone bumped her? Her balance is such that she’d fall. What if she fell off that thing in the middle of the performance? What if she couldn’t get back down? What if, what if, what if…

I sat in my seat with knots in my stomach, wondering what to do. Should I run back and find her music teacher and warn her about all this? I tried to relax, breathe, talk to my husband, but I couldn’t stop thinking about that damn platform. Why hadn’t I fully interrogated the music teacher about the set-up? What kind of mother was I, to not make sure that my child was safe? What if she broke her neck, knocked her teeth out, took some kids down with her? And on and on.

The minutes whittled away, and it was finally show time. I sat perched on the edge of my seat, waiting for the kids to file onto the stage and take their places. I was ready to bound up there at any moment to help her, hold her hand, explain the situation to anyone who would listen. I hoped she would end up on the very first, lowest platform.

There she was, in her white blouse and black pants, striding up to the platform in her lilting gait. When she reached the first ledge, she stopped, knowing that she couldn’t just step up there like all the other kids. I held my breath. The music teacher, standing in front of the platform, noticed her hesitation, and held out a hand to help her up. She ended up on the second platform, on the left-hand side. Okay, she was up. Now she just had to not fall for the next ten minutes.

I didn’t take my eyes off her during their entire performance, willing her to stay upright. She sang, and didn’t fall. When it was time to go, the teacher helped her down, and she strode off the stage without a problem. I sagged back into my seat, relieved that she was off that tower of death.

The rest of the concert was enjoyable, and Lilly had a good time. Nothing went wrong. On the way home I asked her if she knew about the platform. “No, but I made it through,” was her reply. No big deal.  All she could talk about was the middle school boy who belted out “Thriller” with his group.

So the night was a success, but I was an emotional wreck. Near tears, in fact. Probably just the aftermath of my intense worry, but what if this was the rest of my life? I realize that every parent worries about their kids in some form or another, and that it never goes away. But it’s a bit overwhelming when you have to worry about the normal stuff that most people don’t give a second thought. Singing at a concert, for instance.

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What are you freaking out about now, Mom?

This week Lilly starts swimming at the YMCA with her class at school. Just send a towel and a bathing suit three times a week. No big deal, right? Right. When I first heard about it a few months ago, my first thought was “Oh shit.” Then my next thought was “How can we make this work?” Because all the “What ifs” started their chorus in my head. What if she slips and falls on the wet floor? What if she has a poo accident in the pool? What if she drowns, for god’s sake?

I have to say that the school staff have bent over backwards in making sure Lilly can take part in this. I’ve talked with the school nurse and her physical therapist, who talked to the principal, who talked to the Y staff; and they’ve found a great teacher’s aide who is willing to go with her to the pool and help her with just about everything. It helps to know that I’m not alone in this, and that the school staff loves her and will do what they can to make sure she’s included in a safe way.

Her first day of swimming was this past Monday. Everything went fine. She had a blast, and wishes she could go everyday.

I still worry. I always will. But I have to learn to trust that everything will be okay, that Lilly is a strong, determined little girl and that there are others who are willing to help.

Here’s a more constructive What if: What if I trusted in a supportive universe? There’s always hope, I guess.

 

 

Lilly Lately

Thought I’d post a few photos of what’s been going on in Lilly’s world lately.

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Bangs! She looks so much older. They’re already starting to grow out.

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8th birthday party at the French King Bowling Center. The boys were busy playing games, but the girls were all about the food!

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First snowman of the season. 

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Cupcakes we made from one of the baking sets she got for her birthday. The vanilla frosting  called for butter, but since we had none in the house, we used margarine. Big mistake. Yuck. We frosted the others with Nutella. Yum!

Fear

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Lilly’s been struggling with urinary tract infections, at least 4 or 5 over the past year. The last time she had such trouble with them was when she was a toddler. Back then they usually progressed far enough for fever to tell me what might be going on; these days she’s much more articulate and can describe her symptoms, usually pain in her lower abdomen, pain when cathing, and just being tired beyond the usual, before it gets to the fever stage.

In between these two trouble spots of UTIs, there was a period of years when she didn’t have a single infection. For some reason, between the ages of 4 and 7, we had a good run, and I became complacent. I thought, foolishly, maybe we’re clear now. Maybe UTI’s won’t be such a problem for her. Maybe we can get away with this. Silly, silly Mama. UTI’s will always be an issue for Lilly. Some years will be good; some will be troublesome.

I can deal with that reality, except that any problems or concerns about her bladder dredge up a deep fear in me. Several years back, we took a few trips to Boston Children’s Hospital because the pressures in her bladder were high, and her medication at the time wasn’t helping. We were exploring the idea of using Botox to relax her bladder if nothing else could be done; otherwise, the only alternative was bladder surgery (in which a piece of tissue from her intestine would be sewn onto her bladder, in order to allow it to expand more easily and fill with urine).

The bad news was that Lilly’s bladder was not a good candidate for the Botox treatment; the good news was that by the time we actually got her to Boston for the urodynamics tests, the pressures in her bladder had gotten better (I believe it was due to changing her medication to a pill form rather than a liquid in the meantime, and so she ingested more of the medication that way). Anyway, it was a huge sigh of relief, because if the pressures hadn’t normalized and the Botox was a no go, the only option would have been the surgery.

The prospect of this surgery terrified me more than words can say. We had gone through a tethered cord surgery (surgery on her spinal cord) when she was three, and even though the operation went well and was considered a success, it was a nightmare time for us. The idea of your child going under the scalpel and undergoing a long, painful recovery is easily one of the most horrible things I can think of. I’m certainly grateful that modern medicine makes it possible for my child to live and to continue living, for the most part, in good health. I’m also aware that a lot of kids with Spina Bifida go through dozens of surgeries in their lives, from shunt malfunctions to spinal fusion to orthopedic surgeries. My kid has only had two (repair surgery at birth, and the tethered cord surgery). Lucky, indeed.

But it’s not something you can ever get used to, no matter how many or few surgeries your child has had. It’s still stressful, it still strikes fear into your heart. This sudden spate of UTI’s concerns me, and is something I’ll discuss with the doctors at Shriner’s in March; I try not to think the worst, but the fear creeps in nonetheless. It’s a monster I constantly have to control and tame. Maybe that’s why I’ve been writing so many horror stories lately–it’s a way for me to channel the fear that invades my life now and then.

While working on this post, I came across a quote about fear on Kristen Lamb’s Blog. She was referring to fear in your writing life, but it works just as well for any kind of fear (she quotes Paul Atreides in Dune, by Frank Herbert):

I must not fear. Fear is the mind-killer. Fear is the little death that brings total annihilation. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. 

Lilly will, too. And that’s the most important thing.

Mt. Crag

My Writing Journey

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My  husband and I took Lilly hiking up Mt. Crag in Northfield, MA a few weeks ago. The foliage was hitting its peak and the morning fog burned off into a sunny, pleasant day. I hadn’t been up here in years, since before Lilly was born; when Jay suggested we bring Lilly there, I hesitated. Wasn’t that a bit steep for her? It’s a high, rocky climb. You’ll have to carry her up most of the way. It’s too tiring, isn’t it?

He waved away my concerns. “She’ll be fine.”

And you know what? She was. She did great. Jay held onto her under her arms and helped pull her up, but she zipped right up that ascent without a complaint. “This is fun!” she said.

Sometimes, I just have to let her do things. I have to ignore the chorus of worry that’s always singing in the back of…

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Mommy Guilt

When my sister was 13, she got sick. She lost weight, was thirsty all the time, peed a lot. She got dark circles under her eyes. When my mother took her to the doctor, she came home later alone, as my sister had been admitted to the hospital.

“She has diabetes!” I’ll never forget the edge of anger in my mother’s voice as she made the announcement, something I noted but didn’t quite understand.

I’d never heard of diabetes, and my mom didn’t know much either; she tended to call it “sugar”. She spent days in the hospital with my sister, learning about the pancreas, and insulin, and ketones and sugar, and using an orange to practice giving insulin shots. This was a tough time for my mom-she was raising two girls alone after a heartbreaking divorce, on welfare, alone when she’d never been alone. Now on top of that, a sick child, learning medical procedures, measuring insulin and injecting her child several times a day in the arms, legs, buttocks, stomach, monitoring blood sugar with pin-pricks to the fingers. It was all very overwhelming for my mom, but she hung in there and did what she had to do for her child.

It was much later, as a young adult, that I learned she felt massive guilt. She believed that it was her fault that her child developed diabetes. I couldn’t fathom it. How could it be her fault? It just happened. I’m ashamed to admit that I thought it a little silly, a ridiculous mom thing that made no sense.

You can see where this is going, right?

Fast forward 15 or so years, and I’m drowning in my own mire of guilt, grief, and anger, when we got the SB diagnosis for Lilly. After the initial thoughts of “How could this happen?” came the inevitable “It’s my fault.” The child came out of me, therefore, it must be my fault. If she hadn’t come out of me, she wouldn’t have this.

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Finally, I understood what my  mother had gone through, the thought processes that led to her conclusions. I finally understood the guilt, and that puzzling anger when she came home that day. It all made perfect sense.

It’s taken me several years to get a handle on all of these rioting emotions. What helps is a healthy, happy little girl, and procedures that are just a part of our normal routine. There’s also this realization: feeling guilty is a bit silly, a ridiculous mom thing that I shouldn’t waste my time or energy on. Acknowledge the emotion, and move on.

(Note to self: Ask mom if the feeling ever goes away).