4b4the4th

Ever since Lilly was born, it’s been in the back of my mind that I’d like to get involved in advocacy for spina bifida, but felt I was too busy caring for my child, and the rest of my life, to take on anything too time consuming.

Recently, I found out about a fundraising campaign called 4b4the4th. It aims to raise funds for and awareness of spina bifida through the Spina Bifida Association, in the four months leading up to July 4. It’s fairly simple: you just register and set up a web page, and share it through social media like Facebook, Twitter, and email, where people can donate. Even I can do that!

The SBA’s goal this year is to raise $42,000. I’ve set a modest goal of $1,500. It won’t win me the grand prize of tickets and accommodations to this year’s SBA Conference in Minneapolis (I’d love to go to one someday, though), but that’s okay. I just want to do my little part in helping out the SB community.

If you’d like to donate to the 4b4the4th campaign, go here.. Lilly and I, and the SB community, would appreciate any amount you can give. Thanks!

 

 

 

 

A Visit to Shriner’s

Every six months I bring Lilly to Shriner’s Children’s Hospital, in Springfield, Massachusetts, for the spina bifida clinic.

This is a great hospital with wonderful, caring staff. Despite this, the clinic is always a bit overwhelming; after being there for 2-3 hours, I leave the place feeling relieved (it didn’t help that I was sick this time), and somewhat panicky and anxious. There’s always a lot to do, a lot to think about.

At the clinics, you sit in one of the examining rooms, and a parade of specialists each come in, one at a time, making their rounds to each of the families in attendance. We see, in no particular order, a nurse, a pediatrician, a urologist, an orthopedist, a physical therapist, and an occupational therapist. This time, we also talked to another doctor about a new program for child development (cognitive development, school issues, adjustment, etc.).

On this visit we discussed Lilly’s bowel program (or lack of an effective one), and I was given information on what is called a “cone enema”, something that has worked for so many kids in keeping them accident-free, but is, to put it simply, a ton of hard work. I dread it, and yet I know it’s something that I have to do for Lilly’s sake, no matter how much resistance I might get from her. I’m thinking it’s something to start in the summer.

Also for the summer, I need to find a local occupational therapist to help her with her hand strength, and will ask her pediatrician for a recommendation in May. Then there’s the orthotist (the brace specialist) to see in April, and I have a new Rx from the Shriner’s orthopedist for him, as Lilly’s braces are rubbing against the inside of her foot and causing redness and sores. And I have to call Boston Children’s Hospital to make sure they’re okay with her urodynamics (she went there last year for some special tests on her bladder) before Shriner’s will take over that segment again. Oh, and call to make an appointment with a new neurosurgeon in Springfield, to keep an eye on her brain MRI’s (to monitor for hydrocephalus).

I don’t list all these tasks to make people feel sorry for me (that poor dear, she has so much to do!). This is pretty typical stuff, and we’re used to it. Rather, I find that most people, even family members who know about Lilly’s condition, don’t realize how encompassing spina bifida is, how many systems in the body it affects. In fact, if you were to look at Lilly now, you may not even know that anything at all is wrong, unless you notice her slightly lilting gait, the braces on her feet, or the scar on her back. It’s a kind of “invisible disability”, at least for her. If you’re curious to know about the various physical issues it can cause, I created a page that explains them here.

Luckily, Lilly loves going to Shriner’s. Their spacious waiting room has a touch-screen computer game that she likes to play, it has a big playroom with a toy refrigerator and stove, and a kind of game that is illuminated on the floor and is manipulated by your child’s movement. In the examining room, she’s happy to color with crayons between specialists. A far cry from when she was a baby, and she’d scream through the whole appointment!

“Special” or Not?

Sometimes it’s hard for people to know how to react to disability. I know what that feels like; before Lilly was born, I had no experience with disability, and didn’t know how to react, either. There’s a fear of offending, a discomfort in the face of the unfamiliar.

This became apparent to me as I started to bring Lilly out in public with her AFO’s, in her walker, or in her stroller chair, obvious signs that she’s not a “normal” kid.

A walk in the woods.

I remember strolling her down the street one day when she was about 2 or 3 years old. We passed a man with another girl who was maybe the same age as Lilly. As we passed, the girl-displaying a child’s natural curiosity-pointed her finger at Lilly’s braces and said, “What’s that?”

 

“Hey, don’t ask that,” the man quickly scolded. “That’s rude.”

“It’s okay.” Addressing the girl, not the man, I said, “She just needs help walking.”

“You see,” the man went on, bending down a little to lecture the girl. “That’s why you should feel grateful. Some kids aren’t as lucky as you are.”

“It’s okay,” I said again, forcing a smile, appalled at the man’s behavior. “She’s doing fine.”

Instead of using the incident as a learning opportunity for his child, he made her feel bad, embarrassed me, and perpetuated the flawed idea that anyone with a disability should be pitied. Luckily, Lilly was young enough to not really understand the situation, but I often wonder if I should have spoken up and corrected the man instead of giving in to my instinct to be polite.

Probably. I didn’t, not only because of the good job my mom did in raising me to be a “nice” girl (perhaps she did her job a little too well), but because I knew his reaction stemmed from ignorance and his inexperience with disability.

Contrast this desire for Lilly to be treated equally to making sure her needs are met at school and other places. I often wonder if I’m being overprotective, if I’m being “that mom” in calling or emailing her teacher whenever I think Lilly is getting short shrift because of her issues.

For example, should Lilly miss out on morning snack because she’s with the nurse getting cathed? Should I push for a para to help her zip her coat at recess and open her milk carton at lunch, or should I push Lilly to speak up and ask for help? I have encouraged Lilly to speak up, but until she finds the courage to do so (unfortunately she’s shy like her mother), she’ll be cold at recess and thirsty at lunch.

I’m not sure what the answer is. It’s a delicate balance between meeting her needs, encouraging her independence, and educating those around her.

Fighting the Grief

I’ve been thinking a lot about this quote lately. It makes a lot of sense. Why waste time grieving when you have a beautiful child before you? And yet, it slips in, like a cold undercurrent in the river of your life.

I’ve written a little about grief here before, and you may well think that I schlep around with a frown on my face, and that our house is a grim, dark place of mourning.

Nothing could be further from the truth. We’re a happy family. We laugh a lot. We’re silly. Lilly is a vibrant, well-adjusted little girl who sings, dances, likes jokes, and takes great joy in the wackiness of the Three Stooges. We’re far from morbid.

And still, I find myself fighting frequent sadness. In an Early Intervention parent support group several years ago, we talked about “chronic grieving”. One goes along thinking, I’ve got this, I’m over the worst, but then something crops up-Lilly’s tethered cord surgery at three, for example, or any number of other challenges-and it plunges one right back into that dark place.

Often there’s a feeling of guilt associated with the grief. There’s so many other children, so many other people, who are suffering more than we are, who have it so much worse. Kids with cancer, or other fatal diseases. Even with spina bifida, there are so many other kids who have more severe problems than Lilly-endless shunt troubles, numerous orthopedic surgeries, lives mostly confined to wheelchairs. We’ve got it good, compared to these situations. How dare I feel so sad sometimes? Am I so ungrateful?

No. I’m acutely aware of how much worse it could have been for Lilly. We’re lucky, in our way. Still, every time I see a child running or jumping in a way Lilly can’t, the permanent knife in my heart twists. Every time I hear about a three year old who’s been potty-trained, I want to weep. Is that wrong?

I don’t think so. I think everyone has their own province of grief. It’s personalized, and one form isn’t more “justified” than another.

I’m very careful not to show any kind of despair about it in front of Lilly, or give her the impression that it’s her fault, or that she should feel sorry for herself. It’s a private struggle of my own that I’m determined not to burden her with.

And every time I hear this child laugh with glee, every time she surmounts the latest obstacle, every time I see her just being a regular kid, the shadows are chased away, and it’s all sunshine.

The What, Not the Why

When you have kids, you expect, at some point, the tough questions:

“Where do babies come from?”

“What happens when you die?”

“Do you believe in Santa, mom?’

Can we talk about babies instead?

 

Each time, your carefully constructed answer isn’t enough anymore. They want more details. They want to know why.

Lilly’s been asking these questions, in one form or another, over the past few years, and it’s getting harder to answer them in a way that is both honest and at her level of comprehension.

But I’ll take all these tough questions over the ones that I’ve dreaded since she was born:

“Why do I have a scar on my back?”

“Why do I still wear a diaper?”

“Why can’t I pee like you?”

Ever since the questions started appearing, I’ve tried to calmly and matter-of-factly explain, in very simple terms, the concept of spina bifida, and that she has it. She has a scar on her back because she was born with a boo-boo there, and the doctor had to fix it. She wears a diaper and pees differently because of the spina bifida.

Most of the time, my answers satisfy her, or at least, they seem to. She’ll go back to whatever she was doing, happily painting or drawing or dancing (dancing!). It doesn’t seem to affect her in any lasting way, at least not yet. She’s simply curious, like when she asked about the autistic boy next door.

“He was just born that way,” I answered, “Just like you were born with spina bifida.”

And that was enough. Or it seemed to be. I thought I could see the wheels turning in her mind, churning it over, digesting it, paving the way for the next inevitable question: but why?

Why, indeed.

It’s a question I’ve been struggling with since the diagnosis. Not so much anymore; I’ve come to accept that there is no reason. It just is what it is.

But at the beginning, it was hard. The grieving mind searches for a reason. I’m not a religious person, so the usual platitudes-“God doesn’t make mistakes,” or “God gave a special child to special parents”-didn’t help at the time, though I understood their intent. Well-meaning people wanted to make me feel better. I don’t think I wanted sympathy. I wanted my grief and rage to be acknowledged.

This morning while I cathed her, the question finally arose: “Mom, why do I have spina bifida?”

Still bleary-eyed from sleep, I tried to explain it as simply as I could, that when she was in my tummy her spine didn’t form correctly, and that caused some problems.

“I wish that didn’t happen. I wish it had formed correctly,” she said.

“I do, too. But it did happen, and all we can do is make the best of it.”

“Will it ever go away?”

A tiny pause as I swallowed my despair.”No, baby.”

“I’ll have it ’til I die?”

“Yes.”

“But when I’m in heaven, I won’t have it.” (Though I’m not religious, I’ve used the concept of heaven to explain what happens after we die. It’s fairly simple, and preferable to telling your seven-year old “I don’t know.”)

“Nope, you won’t have it. But right now, I’m going to help you, okay?”

She accepted this with equanimity, and we went on to talk of other things. But I imagine within a few years she will go through her own circuit of emotions. All I can do is listen, and acknowledge whatever emotions come up. And then proceed to let her know that spina bifida does not define her. It’s part of who she is, but it need not limit her in any way.

And don’t waste too much time on the why; concentrate on the what: what makes you happy? What makes you wonderfully you? Figure out what you want to do with your precious life, and then go for it. Don’t get stuck at why.

 

Blessed Fruit and Shadow Dolls

Well, it is sort of awesome, and it’s sort of not.

I’ve known for quite a while now that I haven’t been doing my job in teaching Lilly how to be independent, which is crucial for any child with a disability. She’s seven, and I still dress her. I brush and floss her teeth. I put her braces and shoes on for her. I change her soiled diapers. I brush her hair. I gave up trying to get her on the potty for now. It’s just faster and easier this way.

Geez, lady, you might be thinking, you’re teaching your child learned helplessness. And you’d be right. To a certain extent.

I believe Lilly is capable of doing most of these things. The thing is, she won’t do it for me. For my husband, yes. For the school nurse, her grandmother, a stranger off the street, sure. But me? No. I get crossed arms, pouts, and tears.

I recognize this is probably normal behavior. Kids know their moms will still love them no matter how much resistance they give. It’s a battle of wills, a testing of the waters.

And to be fair, Lilly does have a hard time with buttons, snaps, and zippers, and any other kind of fine motor skill. Some kids with SB have weak hand strength, and Lilly is one of them. I petitioned her school for some Occupational Therapy a few months back. I’m still waiting to hear from them. It’s probably forgotten under a pile of paperwork on some administator’s desk. Such is the public school system.

Yet I still feel Lilly should be farther along than she is, and I blame myself. This became quite clear to me the other day when I woke from a strange dream (bear with me):

We were at an amusement park and had just gotten off the ferris wheel. A woman began luring Lilly away from me. Apparently this woman believed Lilly was special, and that any fruit she peeled with a paring knife was blessed.

“But she doesn’t know how to do that,” I insisted. “I haven’t taught her yet!”

“We’ll teach her,” the woman said haughtily. And off she went, leading my daughter away from me. I sobbed, but no one heard me.

I think the knife bit came into play because at work the previous night (at a grocery store), a customer in my line was telling me that he lets his 7 year old daughter cut some fruit with a paring knife (supervised, of course).

Wow, I thought. I don’t let Lilly anywhere near knives. I don’t let her pour milk, for heaven’s sake!

In two weeks, we go to Shriner’s for her 6-month check-in, and I think we’re going to begin the process of teaching Lilly how to cathe herself. This is something we’ve been looking forward to, as for the past five years, we’ve had to cathe her every three hours during the day. (If case you don’t know what that is, it’s inserting a catheter into her urethra to drain the bladder of urine. Just so you know, this an SB blog-we’re going to be talking about poo and pee, kids!).

I can only imagine how this might go. I can’t even get her to gather her supplies when it’s time. Practicing on her special “shadow” doll with the hole between her legs was fun for the first two times; now the doll is buried underneath a mountain of other stuffed animals. I foresee more resistance!

My plan is to enlist the help of the school nurse, of course, who cathes her twice everyday at school, as well as her dad. As long as I know she’ll do it for someone, I won’t have visions of cathing her at sixteen years old.

For the other issues, like dressing and braces, I plan to find some OT for her over the summer, where she can learn how to do these things. Again, I think if someone else teaches her, I can be there to support, enourage, and enforce.

It’s true that your kids grow up way too fast. At least Lilly is slowing it down a bit for us. And despite all the worry surrounding it, it is kind of awesome.

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:

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!