Long, Hot, Wet Summer

rainy day

Summer can be a challenging time for us. As much as I know Lilly would love to go to a real summer camp, I don’t feel she’s ready for it. It all boils down to bladder and bowel self-care. Can she catheterize herself? Can she clean herself up if she has a bowel accident? If the answers to these questions are no, then she’s not ready. And at nine, she’s still not ready. No matter what type of camp, if she’s going to be gone for more than a few hours, she has to be bathroom-independent.

I’ve managed to find something she can do at least part of the summer these past couple of years, through a place called Artspace. It’s a nonprofit organization that offers art and music classes to both adults and children. Lilly takes violin through school, which is sponsored by Artspace, and so there is a week during the summer which she can take a violin intensive for free.

I also managed to pay for a craft class, so she had two weeks of fun this summer. The classes are perfect for her, in that they’re only 3 hours long each day, short enough for her to get through without needing to be cathed, but long enough for her to be engaged and learn something. It’s close enough to where we live, too, so I can push her there in her stroller chair when we don’t have the car, which is often (we were lucky enough not to get caught in any rain, and believe me, it’s been raining like the Great Flood is upon us). The sweat rolled off me like Ted Stryker at the controls in Airplane on those steamy mornings, but anything for my little angel (and some time for writing).

 

The problem is, the classes are expensive. Almost prohibitively expensive, for us, though I managed the one class. There’s no financial aid available for them, and a lot of the time they’re cancelled for lack of enrollment anyway. Such is the sorry state of the arts these days.

We’ve been going to a favorite lake to swim on Sundays, where Lilly can practice her still-developing swimming skills (when it’s not raining). I’ll push her into town and visit the library, the co-op for a snack, the antique store she loves to poke around (when it’s not raining). Anything that doesn’t require too much cash.

Other than that, I fear she’s been watching too much TV. I’ve seen enough of America’s Got Talent, American Ninja Warrior, America’s Funniest Home Videos, and Let’s Make a Deal to last me several lifetimes. It’s been too hot to bake (something she loves to do), and there’s only so many times I can sit for a marathon game of Monopoly.

Here’s the thing: when I was a kid, summer was an endless adventure outside, where we left our house in the morning to bike, roller skate, and play games with our neighbors, and didn’t come back until we were called in for lunch; we’d gulp down our bologna sandwich and run right back outside until dinner. It was an endless adventure.

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I’m bored, Mom.

It’s different with my child. Lilly can’t ride a bike well enough to go it alone or even ride with other children; my husband or I need to be right there. Rollerskating is out, obviously, as well as scooters. And running around playing hide and seek? Not where we live. When I was a kid I lived in a shabby house on a shabby street, but our and our neighbor’s back yards formed a sort of enclosed safe space to play. Here, there are apartment buildings surrounded by streets with zooming cars, and we have no yard to speak of (and besides, it hasn’t stopped raining).

There’s a 3-year-old girl next door who loves to play with Lilly, and sometimes her classmate Chris who lives across the street will come over to play for a while, but that’s it, and the visits are infrequent. Her best friend Lilla moved away, and her other friend Holly hasn’t been around. What’s a kid to do?

As an only child, Lilly is pretty good at entertaining herself. But after a while it gets boring. It’s been a long, hot, wet summer, and I think for the both of us, school can’t get here fast enough.

 

 

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Monday in the Park with Lilly

playground

With the arrival of spring finally, I was able to take Lilly to the park the other day. I wasn’t even sure if she’d be interested in anything there anymore, but she wanted to go, so off we went.

The splash pad won’t be activated until the end of May, so that was out. I asked her if she wanted to go on the swings. Nah. She poked around a little, climbing up the stairs to the slide, and I felt she’d come a long way since she was a toddler and I had to help her up the steps and across the platforms. Now, I could watch from below, without (too much) anxiety, as she made her way through the structure. She even climbed up the ladder-like structure with footholds, with me just hovering below, spotting her in case of a slipped foot. But she did fine.

There’s another structure across the way that is generally for climbing, with ropes and ladders and a kind of rock wall. She’s never been able to negotiate this structure from very early on, but she wandered over to it anyway.

“Look, mom, it’s like a hammock,” she said, indicating the black ropes that did, indeed, resemble a big hammock, just with very wide gaps between the ropes. She tentatively tried to sit on part of it, but didn’t feel stable; she quickly decided it wasn’t for her. Meanwhile, kids much smaller and younger than her were zipping around, hopping onto it, climbing, hanging, swinging like little monkeys. We watched and laughed at their antics, but inside my heart broke anew. She doesn’t say much, and I often wonder what she thinks.

She went around to the side with the rock wall. She wanted to try it, but the first foothold is far too high for her to get her foot up onto it. We laughed as I tried to push her up so she could gain purchase, but she’s too heavy. She tried a few times, but gave up after a bit.

“Kids smaller than me can get up here,” she said, but not with any resentment or anger. Just a fact.

“Well, they don’t have the same challenges as you,” I said.

“No,” she said, instantly going into I’m-going-to-argue-with-mom mode. “I’m not different. I’m the same as them.”

“Okay,” I said, not wanting to push it. We wandered off to sit in the shade and people-watch for a while.

I often wonder how she views her “challenges” as I put it, how she views herself in comparison to other children, what she thinks. She’s clearly aware of differences, but doesn’t always want to admit to them, like the above example. She knows she has Spina Bifida, knows that because of it, she can’t do certain things other kids do, or rather, has to do them differently. Certain kinds of climbing, jump-roping, those little two-wheeled scooters are off the table.

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Lilly (walking) keeping up with her friends.

“I’m the slowest runner in my class,” she said to me one day, pouting a little bit. I’m getting very good at ignoring the knife-twist in my heart that these comments elicit, and go directly into Mommy-mode:

“That’s true. But you know what? There was a time when we didn’t think you’d be able to run at all. The fact that you can run [in her slow, loping way] is an amazing thing to us, a thing you should be proud of. You don’t have to be the fastest. And there are so many other things you’re good at, things that you excel in. You’re a great reader [5th grade level], a great artist, you play the violin. Focus on the things that you can do, and do well.”

She was fine after that, or at least, forgot about it for awhile. I love that she wants to keep up with her peers, that she doesn’t want to be treated any differently. I think that bodes well for the future. I like that stubbornness and determination, and I don’t want to quash it with being overprotective, but it can be hard. I have to find the line between safety and letting her try things.

Bicycle riding has always been something we wanted her to do, but it’s taken several years of trial and error to get her going on it, find the right bike, help her overcome her nervousness of wobbling on the training wheels. This year, we found a pretty purple and aqua bike that she loves. We still feel we have to jog alongside her in case of toppling over to the side, but her core strength is getting stronger and she’s staying more upright.

It’s exhausting, but worth it to see her smile of triumph as she pedals away.

Lilly Lately

Here’s what’s been happening in Lilly’s world the past few months or so:

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With Santa at Christmas. The Easter bunny and the tooth fairy are out, but I think she still believes in this guy. Or WANTS to. 

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With her friend Chris.

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Viewing this year’s ice sculptures at the Winter Carnival.

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Putting silly sentences together with Mom.

No major health concerns, she’s been remarkably well over the winter and so far this spring. Mystery pains in her legs, and we were a bit worried about tethered cord again, but I think she’s just growing. And growing. And growing!

Lucky

I’m part of a Facebook group for parents of children with spina bifida. We talk a lot about our kids’ poop (really), because that’s the focus, but a lot of things can come up. One of the things that comes up once in a while is a post from expecting parents who just found out their unborn child has spina bifida. These posts are wrenching to read, because they’re filled with such confusion and fear and grief, and they’re looking for some reassurance and hope.

All SB parents go through this (or any parents whose child has a birth defect). I’ll never forget the day, at 16 weeks during a routine ultrasound, that we found out our unborn baby had a “neural tube defect” . A rapid succession of disbelief, confusion, denial, and then outright terror shot through me. We’d barely heard of spina bifida, knew almost nothing about it. It was something that happened to “other people”, those unfortunate souls. Not us. Not our child.

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Baby days

But the proof was right there in front of us, as the doctor showed us the ultrasound pictures, pointed out the defect on the end of her spine, tried to explain what it was, and what, in a vague kind of way, might come of it. What had started out as an exciting day (we found out we were having a girl–yay!) had turned into a nightmare.

The next few months, I spent a lot of time online looking up information about spina bifida. I’m not sure that was such a great idea, since it painted a terrifying picture of what we and our child might go through. Myelomeningocele (the official term) is a fairly serious defect of the spine, and as such, can have a systemic affect, touching almost every system of the body. We were looking at the possibility of hydrocephalus, paraplegia, bladder and bowel problems, countless surgeries. My mind reeled with it, my heart shattered, my hope of any normal life for us or our child withered.

So I understand these expectant parents who cry out for reassurance. Their world is crumbling. I understand their frustration at doctors who can’t give them the information they want. I was so angry they couldn’t tell me exactly what to expect. As if they were gods or fortune-tellers, rather than human doctors who didn’t have all the answers. The thing about spina bifida is that every child born with it is different. Most have hydrocephalus and will need a shunt in their brain, but not all (Lilly doesn’t). Most of the time, the level of the lesion (the opening on the back that causes nerve damage) on the spine will determine mobility. Usually, the lower the lesion, the more mobility (but not necessarily). Most, if not all, need assistance with bladder and bowel function,  but again, every kid is different in how to deal with these problems.

I consider ourselves lucky in this regard. Lilly’s lesion was quite low. Early estimates put it at L5 (a fancy way of saying it was in the Lumbar region, on the fifth vertebrae), but considering her mobility and other factors, I think it’s even lower, closer to S1 or S2 (sacral). She walks independently, with braces from the knee down, though her balance is spotty and she’s easily knocked over. She used a walker the first three years of her life, and we thought we might have to transition to Lofstrand crutches (the kind with the arm cuffs), but she surprised us and walked on her own on her third birthday.

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Walker days

She’s a rarity in not needing a shunt, and has had only two surgeries in her nine years: the original closure surgery when she was 2 days old, and a cord detethering when she was 3 (this is when the spinal cord, in very simple terms, develops scar tissue and can’t stretch as she grows, causing problems). We live with the possibility it may happen again someday, but so far, so good.

The neurogenic bladder and bowel proves to be, on a practical level, the very worst part of SB, in our experience. We began catheterizing her bladder when she was 3. Honestly, the idea of inserting a tube inside her bladder to empty it terrified me, at first. But like anything, after some practice, it was easy and usually painless. Her doctor prescribed Ditropan to keep her from leaking between cathings, and we haven’t experienced any serious side effects, although it does exacerbate constipation, which is the bane of any SB person’s life. Another problem we’ve struggled with is urinary tract infections. Quite a few when she was a toddler, then several years with no trace, and then last year, recurring infections and a rising resistance to antibiotics. We’ve talked to the urologist, and she suggested a low-dose prophylactic antibiotic called Macrodantin, which seems to be helping. The biggest problem these days is getting started on teaching Lilly how to catheterize herself for more independence (and give Mom and Dad a break!). She just doesn’t seem interested, and if I push it, there’s tears or pouting. Good times!

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Early potty days

The other side of the bathroom coin is bowel function. Because of the nerve damage, the bowel is significantly slowed down, causing constipation. There may be limited or no sensation during bowel movements. Laxatives are a fact of life. A combination of Miralax and Ex-Lax seems to be working for Lilly, along with a cone enema every other night. This procedure, too, scared me at first, but now it’s part of our normal routine. Results can be varied, depending on whether or not she drank the milk or water I put her Miralax in, or if I forgot to give her the Ex-Lax that morning, or what she’s been eating, and on and on. I think “controlled constipation” is what we’ve learned to live with, although I probably need to work a little harder on cleaning her out. Some days she can wear real underwear, and some days she has Pull-Ups on, just in case. She’s had accidents at school, but far less than before we started the cone enema. It’s more work, but worth it.

Did I mention she has a lot of doctor appointments? She has an army of specialists, because so many different systems are affected. There’s her pediatrician, of course, but there’s also her urologist (who we see through Shriner’s Hospital), her neurosurgeon (who keeps track of her brain, watching for any signs of hyrdrocephalus and orders various MRI’s on occasion), her physiatrist (kind of like an orthopedist, but instead of performing surgery, tries more corrective ways to deal with gait problems), her orthotist, who makes her braces based the physiatrist’s prescription, an eye specialist (just to keep a look out for special problems SB kids may develop), and who knows who else I may be forgetting. Needless to say, she misses more school than the average kid. So far, it doesn’t seem to be affecting her progress too much. Sometimes SB kids have cognitive or learning problems, like trouble with organizational skills or concentration. Lilly doesn’t seem to be any worse on these counts than any other child her age. We have a 504 plan at school to make sure her physical needs are met, which we tweak every year.

Worry has become a constant state of being in my life.

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Sounds overwhelming, doesn’t it? It can be. But so is parenthood in general. How can you ever prepare for what’s asked of you? You can’t, not really. So if you’re an expectant SB parent, what can I tell you except this: your experience with your child may be similar to ours, or it may not. Maybe your child will need those orthopedic surgeries, that spinal fusion, a Mace or Mitranoff, bladder augmentation, or any number of other things. Regardless, it will be challenging. There will be really tough days, and there will be rage at the gods. Doubtless, there will be tears.

But there will also be love. More love than I ever thought humanly possible. Sure, I wish she didn’t have SB (don’t believe anyone who may tell you otherwise; that’s bullshit). But she does, and I don’t love her any less for it. I feel so lucky to have this child in my life.

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Keep Stabbing

My Writing Journey

Reassurance can come in some strange ways, sometimes.

Lilly  has been struggling with urinary tract infections (UTIs) for some time now. Every time it seems we have a handle on it, it comes back, like some monster that won’t die. I’m starting to suspect that the bacteria has begun to build a resistance to antibiotics. She just finished her latest round of cephalexin a few days ago; now she’s complaining of pain in her lower abdomen again, and pain with cathing.

Fed up with going to the doctor only to have more antibiotics prescribed, I’ve decided to try a different route: D-mannose. It’s a concentrate of the active ingredient in cranberries that helps with UTI’s. It’s better than drinking gallons of cranberry juice (which Lilly doesn’t like) with all the sugar in it that can cause more problems. I asked for advice on the spina bifida support group that I’m…

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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.