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.

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.

 

 

“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.