Monday in the Park with Lilly

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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.

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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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A Matter of Mobility

When my husband and I first got the Spina Bifida diagnosis for our baby, the overriding question in our minds was: Will our child  walk? When we posed this question to Lilly’s doctors, they couldn’t answer us definitively. They could only say, “Time will tell.”

This respose enraged us.

At such an emotionally fragile time, we needed answers. And in this day and age, with all of our technology, couldn’t they tell us one way or another? Aren’t doctors gods?

Well, no, they’re not. They’re human beings who don’t want to give desperate parents false hope about mobility. They pointed to the low level of her lesion (L5-S1), and the fact that I could feel movement like kicking-it could be arms punching, but it could also be legs. These were “good signs.”

They were good signs. Yet we still wondered, still doubted, still feared. Visions of wheelchairs danced in my head.

A lot of that angst dissipated after Lilly was born. Those legs wouldn’t stop moving, especially when it was changing time. I didn’t complain. We called her “Kicking Bird.”

She got AFO’s (ankle-foot orthosis braces) when she was one and a half, tiny little purple things with butterflies. We borrowed a stander from Early Intervention, this weird-looking contraption we strapped her into, to get her standing and bearing weight. I was grateful for it, but also a little horrified by it. Lilly didn’t seem to mind; we wheeled her up to the front door so she could look outside and watch the world go by.

She got a shiny blue walker not long after. Here’s a few photos of her banging around in it:

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We hauled this walker around everywhere we went for the next year or so. We thought maybe the next step would be lofstrand crutches, and began practicing with them near her third birthday, when Early Intervention would end. But on the very day of her third birthday party, Lilly astonished us all, and walked on her own.

I’ll never forget that glorious day. On that day, I thought I’d never have to worry about her walking again.

Silly me.

These days, Lilly walks independently, but we use her EZ-Rider stroller chair for long distances. She’s still content to let me push her around in it, but there will come a day when she won’t be. And although it’s still pretty easy for her to get around elementary school with her fairly light backpack, I think about my own middle school and high school days, lugging around 50lbs worth of books in my back pack, and know Lilly will never be able to do that.

Add to this her growing height and increasingly precarious balance. The girl trips over nothing. Not long ago, I got the dreaded phone call from the school nurse, informing me that Lilly had tripped going down some stairs, and hit her head pretty hard. She told me to look out for the warning signs of concussion. I had visions of her getting off the bus with bloody bumps and bruises on her head. Turns out she was fine, but these are the things I worry about these days: teeth knocked out or a broken skull.

At the very least, crutches may still be in her future, at least for safety’s sake. There may even be a wheelchair in the horizon. The idea doesn’t fill me with dread as it did seven years ago. Sadness still, maybe, but also a bit of relief in knowing that she will be safer that way, and able to get through her day without getting exhausted or plowed over by other students.

It’s not something we need to think about this moment, but probably sooner than we think. I expect resistance on Lilly’s part; it wouldn’t be Lilly if she didn’t resist!