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.

 

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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.

 

 

Let Her Shine

I had a conference with Lilly’s first grade teacher last week. Although I knew she was doing fine academically, there were a few things I wanted to check in on.

Although I could see from the papers she brought home from school that her handwriting has improved (she has weakened fine motor skills from SB), I wanted to hear from her teacher that she’s on track in that area. I thought maybe I’d have to get Lilly some Occupational Therapy through school to address her fine motor skills. But no; her teacher delivered a glowing report in all areas, including handwriting.

What I really wanted to know was how Lilly was doing socially. Does she have friends? Of course she does-I’ve heard her talk about them often. But I needed to hear it from the teacher.

Ever since Lilly started preschool at age 3, I’ve worried about this. She was shy at first, though clearly interested in other children. She’d gaze in awe at the other kids who flocked around her in her walker. Not only was she the new kid, but she had a cool blue walker that denoted her as different. At that age, different is good.

Bu the time she started kindergarten, the walker was gone, and though still a little shy, school had helped her to come out of her shell a little bit. Now in first grade, her teacher reports that she’s doing beautifully, interacting with her schoolmates, taking part in classroom activities, and not isolating herself in any way. There’s been no problems with teasing about diapers or braces or any other aspect of her disability.

And why would there be? They’re seven. If only we all loved and accepted each other like seven-year olds. Still, I can’t tell you how relieved I felt at hearing this.

I was a painfully shy child, and I remember the awkwardness it could bring, the feeling that I just didn’t belong anywhere. I was afraid, with her shy tendencies, that Lilly would have the same experiences I did, with the added “burden” of having a disability. I can’t bear the thought of her suffering any kind of social isolation, teasing, or bullying.

But at this point, that’s not happening. Lilly is far more outgoing than I ever was at this age. She’s fine.

I have to remember: Lilly is not me. She’s her own little person with her own personality, and I need to be careful not to project my own fears and neuroses onto her. I need to step back and let her shine.

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