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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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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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.

 

 

 

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!

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).