Fear

doctor-appt

Lilly’s been struggling with urinary tract infections, at least 4 or 5 over the past year. The last time she had such trouble with them was when she was a toddler. Back then they usually progressed far enough for fever to tell me what might be going on; these days she’s much more articulate and can describe her symptoms, usually pain in her lower abdomen, pain when cathing, and just being tired beyond the usual, before it gets to the fever stage.

In between these two trouble spots of UTIs, there was a period of years when she didn’t have a single infection. For some reason, between the ages of 4 and 7, we had a good run, and I became complacent. I thought, foolishly, maybe we’re clear now. Maybe UTI’s won’t be such a problem for her. Maybe we can get away with this. Silly, silly Mama. UTI’s will always be an issue for Lilly. Some years will be good; some will be troublesome.

I can deal with that reality, except that any problems or concerns about her bladder dredge up a deep fear in me. Several years back, we took a few trips to Boston Children’s Hospital because the pressures in her bladder were high, and her medication at the time wasn’t helping. We were exploring the idea of using Botox to relax her bladder if nothing else could be done; otherwise, the only alternative was bladder surgery (in which a piece of tissue from her intestine would be sewn onto her bladder, in order to allow it to expand more easily and fill with urine).

The bad news was that Lilly’s bladder was not a good candidate for the Botox treatment; the good news was that by the time we actually got her to Boston for the urodynamics tests, the pressures in her bladder had gotten better (I believe it was due to changing her medication to a pill form rather than a liquid in the meantime, and so she ingested more of the medication that way). Anyway, it was a huge sigh of relief, because if the pressures hadn’t normalized and the Botox was a no go, the only option would have been the surgery.

The prospect of this surgery terrified me more than words can say. We had gone through a tethered cord surgery (surgery on her spinal cord) when she was three, and even though the operation went well and was considered a success, it was a nightmare time for us. The idea of your child going under the scalpel and undergoing a long, painful recovery is easily one of the most horrible things I can think of. I’m certainly grateful that modern medicine makes it possible for my child to live and to continue living, for the most part, in good health. I’m also aware that a lot of kids with Spina Bifida go through dozens of surgeries in their lives, from shunt malfunctions to spinal fusion to orthopedic surgeries. My kid has only had two (repair surgery at birth, and the tethered cord surgery). Lucky, indeed.

But it’s not something you can ever get used to, no matter how many or few surgeries your child has had. It’s still stressful, it still strikes fear into your heart. This sudden spate of UTI’s concerns me, and is something I’ll discuss with the doctors at Shriner’s in March; I try not to think the worst, but the fear creeps in nonetheless. It’s a monster I constantly have to control and tame. Maybe that’s why I’ve been writing so many horror stories lately–it’s a way for me to channel the fear that invades my life now and then.

While working on this post, I came across a quote about fear on Kristen Lamb’s Blog. She was referring to fear in your writing life, but it works just as well for any kind of fear (she quotes Paul Atreides in Dune, by Frank Herbert):

I must not fear. Fear is the mind-killer. Fear is the little death that brings total annihilation. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. 

Lilly will, too. And that’s the most important thing.

Mt. Crag

My Writing Journey

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My  husband and I took Lilly hiking up Mt. Crag in Northfield, MA a few weeks ago. The foliage was hitting its peak and the morning fog burned off into a sunny, pleasant day. I hadn’t been up here in years, since before Lilly was born; when Jay suggested we bring Lilly there, I hesitated. Wasn’t that a bit steep for her? It’s a high, rocky climb. You’ll have to carry her up most of the way. It’s too tiring, isn’t it?

He waved away my concerns. “She’ll be fine.”

And you know what? She was. She did great. Jay held onto her under her arms and helped pull her up, but she zipped right up that ascent without a complaint. “This is fun!” she said.

Sometimes, I just have to let her do things. I have to ignore the chorus of worry that’s always singing in the back of…

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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.

boromir-sb

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).

The Summer of Poo

I’m not talking about Pooh Bear, here.

Pooh

I’m talking about-you guessed it-poop. When you have a child with Spina Bifida, you can’t escape it. Most parents deal with dirty diapers until the age of 2,3, or 4 at the latest, and are glad to be done with them.

Lilly is seven and a half, and we’re still dealing with them.

But not to the extent we have in the past. It’s getting better, and the reason is because of the new bowel program we’ve worked so hard on this summer. It’s called a cone enema, and I knew it was our last hope of keeping her clean.

Summers were always a frustrating time with the issue. Lilly loves to swim at Laurel Lake every summer, but of course we need to put swimming diapers on her. The largest size still fits her, but just barely. But it never failed that she’d have a fairly “poopy” day on these days. Every hour or so, I’d have to change her inside the hot, closed up sun shelter we had on the beach, or troop her up two flights of stairs to the dirty, spider-infested changing room and lay her on a bench to clean her up. I’d haul her huge bag of diapers, catheters, wipes, lubricant, diaper cream, rubber gloves, and sanitizer with me and spread it all out. Then I’d proceed to peel off the wet, dirty swimming diaper, careful not to spill out any solid contents (though the water would mostly swish it about and reduce it to the consistency of the sand that also made its way in there). And I’d wipe and wipe and wipe sand and poo away until the sweat dripped off my face. Several times in 5 or 6 hours I’d do this, even this past summer when we were still getting the hang of the cone enema.

The procedure itself is fairly simple; it’s the variables that make it a long process of trial and error. Every night or every other night? Plain water, or additives? If additives, baby soap, glycerin, castile soap, or something else? How much water, and how much additive? How long to keep it in? How long to keep her on the toilet? Keep giving Miralax orally while on the program, or can we dispense with it?

After eight weeks, I think we have it almost where we need it to be. She’s staying clean for most of the day, and may have an accident later in the day, or maybe not. Last Wednesday was her first day of second grade, and my goal was to have her clean at least socially, while she was at school. I still put a diaper on her, just in case, but if things go well, we might be able to put her in her Frozen “big girl underwear” we bought last week. Hurray!

frozen undies

It was a lot of hard work, and still is-every night we have to carve out an hour from start to finish for the procedure. We may have to miss out on some evening events (school or otherwise) because of that hour. But I wouldn’t give it up for the world, if it means some kind of  normalcy for Lilly. So far she’s been a trooper, with nary a complaint from her, even when it causes some discomfort. I think it helps that she can play games on her ipad while she sits on the potty. I won’t grudge her that playtime; she deserves it.

The Colors of Us

My Writing Journey

colors of us

My daughter loves this book, and so do I. It’s about a seven year old girl (hey mom, I’m seven, too! says Lilly) named Lena whose mother is an artist. Her mother (who is the color of french toast) tells her that if she mixes red, white, black and yellow paint together in the right amounts, it will make the right shade of brown to match her skin.

The right shade of brown? Lena asks. But mom, brown is brown.

Not so, says her mother. They take a walk around their neighborhood to look at all the different shades of people. There’s Lena’s best friend Sonia , who is the shade of creamy peanut butter. Her other friend, Jo-Jin, is the color of honey. Lucy is peachy and tan. Carlos and Rosita are butterscotch and cocoa. Aunt Kathy is tawny, like coconuts and coffee. Isabella is like the chocolate cupcakes…

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Joy

When Lilly was born, I waited for the joy to wash over me like a waterfall of pure bliss. After all, that’s what new parents are supposed to experience, right? All I had to do was cradle my precious child like the beatific, serene Madonna I’d seen in so many works of art, and take my place in the heavenly halls of motherhood. Right?

madonna and child

Well, no.

Lilly was born in a planned C-section because of the spina bifida. Although we’d been aware of the SB since the fourth month of pregnancy, I was still a nervous wreck. I was afraid of the surgery (my first ever), afraid of the new demands of motherhood, afraid of the SB and all it entailed. Still, I held out hope for that proverbial wave of maternal joy to make things right; and when the nurse showed me that little elf-faced bundle before whisking her away to the NICU, I did cry a few tears. Tears of relief, of amazement, and yes, of a deep, abiding love, a love I’d felt for my child since conception.

But joy? Not quite yet. The closest I’d come at that point was during the first few months of my pregnancy. I loved being pregnant. I’d heard horror stories from so many women who had debilitating morning sickness. Not me. I didn’t throw up once. I felt amazingly alive and beautiful-my hair and nails were full and glossy, my body became soft and rounded, without an ounce of excess weight. Just that baby bump beginning to show. I truly glowed, as the expression goes.

The first flutterings of movement in my womb, evidence that an actual child was growing in there, was surreal and thrilling. The news of the spina bifida at four months was a crushing blow and shadowed the rest of the pregnancy, but I was otherwise healthy and tried to enjoy it as much as I could. I tried to take joy in the unfurling of autumn around me, my favorite month, but all color had been drained from my world.

In the gloomy month of February the stress and worry surrounding the birth set in. Soon we had an actual, squalling, defenseless infant under our care, a baby with a wound on her back, with two parents who had no idea what they were doing. It was all so overwhelming; I was anxious and weepy.

I remember one night during that fumbling, sleep-deprived first month. I held my crying baby against me as I rocked her in the rocking chair. My husband lay sprawled at my feet on the floor, tired and at wit’s end, a hand touching my ankle to show he was there. Lilly wailed, and I cried, hot, silent tears coursing down my cheeks. I remember thinking, I love this child more than life, but I’ve made a terrible mistake. I can’t do this. This baby deserves a better mom.

Such were my irrational thoughts most of those bleary-eyed first three months. Joy was a rumor, a myth, something other mothers-good mothers-experienced.

And then, as spring strained toward summer, a confluence of things began to happen. We all started to get a little more sleep at night. Routines fell into place, and I started to feel less flustered, more in control. Lilly’s stitches came out, and she healed.

And she smiled. She would look at me and return my smile; she’d laugh in response to mine. I’d talk to her, and she’d burble something out of her lips, fascinated by her own sounds, testing the early waters of speech. She’d curl her fingers, flip her hand around, and watch in awe. She became amazed at herself.

And so did I. She wasn’t just a squalling, helpless little creature anymore. She was a person. Her personality began to bloom like the summer flowers unfolding all around us. This amazing person came out of me. She was mine, and I was hers, and that would always be.

That’s when joy slipped through the back door and surprised me. For some reason, I remember feeling it most intensely while we were in the grocery store one day. I pushed her around in her stroller, shopping, just doing a normal, mommy thing, and it hit me-I’ve never been so happy. It felt right, meant to be. Looking at my child, the joy bubbled up inside me, like the nonsense words that so often escaped from her little lips-spontaneous, indefinable, but unmistakably with her as its source.

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Scar

flower sb

Lilly’s scar is in the lumbar region, rising up from her tailbone at least 3 or 4 inches. It’s surrounded by a pinkish-red halo at the bottom, where the original lesion was, a bubble of spinal nerves that protruded from her body. The original repair surgery left a fairly delicate scar (though it seemed a little horrific in a Frankenstein kind of way when the stitches were still in as an infant), round and bulbous at the bottom, and then a thin line rising up like a vine, with a small feathery shape at the top. It’s not so bad, I thought. When she grows up, she can get a tattoo around it, make it look like a pretty flower. Naive of me to think that she wouldn’t ever need another surgery.

At 3, she had tethered cord surgery. The neurosurgeon had to revisit the area, slice through the original scar tissue, butcher it a bit more. The resulting scar is thicker, a little longer; you can see the cross-hatch stitching along the sides, like a zipper. No delicate flower anymore, though it faintly shines pearlescent. No flower tattoo to pretty it up, and who knows if she’ll need surgery again? Better to look at the scar itself as a tattoo. I’ve heard them referred to as “badges of courage”, though obviously she remembers neither surgery. There was no opportunity for bravery; but we like to make heroes of our children.Lilly had always been curious about the scar, wanted to hear the stories behind the surgeries. Only now has she become aware that not all children have these scars. She’s “different”.

We solved the diaper dilemma with Goodnites underwear (normally used by kids who have bed wetting problems at night, utilized here for bowel accidents during the day). They look like normal underwear, and it’s all right if the top shows over her jeans. But the scar still shows now and then, a pale caterpillar crawling up from below the waistband. I try to find long shirts to cover it, but the shirts still ride up sometimes when she sits or bends over. She’s not distraught over it yet, just aware. A day will come when she will do anything to cover it up so no one sees.

I will help her in this, but I’ll also encourage her not to be ashamed of it. It’s not a brand of shame, any more than it’s a badge of courage. It’s a scar she was left with because of two surgeries. That’s all. She can look at it as ugly or beautiful, but it’s a part of who she is, part of her landscape. It’s hard enough raising a girl who accepts her body. Scars (and disability) make it harder.

 

Zootopia

My Writing Journey

Zootopia

Lilly is getting to the age where she can sit still and watch a full-length (hour and a half) movie, so I took her to the theater on Sunday to see Zootopia.

I’ve only seen a handful of the Disney/Pixar offerings, mostly since I became a mom. I’ve loved all of them, and this one is no exception.

Zootopia is a grand city of “evolved” animals, where predators no longer hunt prey, and the anthropomorphic animals live together in apparent peace and prosperity. Judy Hopps (voiced by Ginnifer Goodwin), a rabbit from Bunnyburrow, is Zootopia’s first rabbit police officer, something she’s dreamed of since she was a little bunny. She was the first rabbit to attend the police academy, worked hard, and graduated at the top of her class. She excitedly waves goodbye to her worried parents, hops on a train to Zootopia, and starts her new job with the…

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Vacation Victory

My Writing Journey

We’re closing in on the end of school vacation week, and Lilly and I have had a fun time enjoying the great New England weather we’ve been having. I’ve had fun coming up with questions for readers and reading your answers. Thanks for participating!

We spent the week doing some fun things with Lilly-we hiked in the Quabbin Reservoir, played at our neighborhood park quite a bit, and visited Yankee Candle just down the road from us. Lilly loves this amazing candle store that has so much more. She loves to visit the toy store, the candy shoppe, and the Bavarian village (where it “snows” every four minutes with bubbles). This week there was extra fun, as they offered lots of activities for kids. We went bowling and mini-golfing on one day, and had sundaes with Santa and Mrs. Claus on another. Here are a few pictures of our…

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Let Her Shine

I had a conference with Lilly’s first grade teacher last week. Although I knew she was doing fine academically, there were a few things I wanted to check in on.

Although I could see from the papers she brought home from school that her handwriting has improved (she has weakened fine motor skills from SB), I wanted to hear from her teacher that she’s on track in that area. I thought maybe I’d have to get Lilly some Occupational Therapy through school to address her fine motor skills. But no; her teacher delivered a glowing report in all areas, including handwriting.

What I really wanted to know was how Lilly was doing socially. Does she have friends? Of course she does-I’ve heard her talk about them often. But I needed to hear it from the teacher.

Ever since Lilly started preschool at age 3, I’ve worried about this. She was shy at first, though clearly interested in other children. She’d gaze in awe at the other kids who flocked around her in her walker. Not only was she the new kid, but she had a cool blue walker that denoted her as different. At that age, different is good.

Bu the time she started kindergarten, the walker was gone, and though still a little shy, school had helped her to come out of her shell a little bit. Now in first grade, her teacher reports that she’s doing beautifully, interacting with her schoolmates, taking part in classroom activities, and not isolating herself in any way. There’s been no problems with teasing about diapers or braces or any other aspect of her disability.

And why would there be? They’re seven. If only we all loved and accepted each other like seven-year olds. Still, I can’t tell you how relieved I felt at hearing this.

I was a painfully shy child, and I remember the awkwardness it could bring, the feeling that I just didn’t belong anywhere. I was afraid, with her shy tendencies, that Lilly would have the same experiences I did, with the added “burden” of having a disability. I can’t bear the thought of her suffering any kind of social isolation, teasing, or bullying.

But at this point, that’s not happening. Lilly is far more outgoing than I ever was at this age. She’s fine.

I have to remember: Lilly is not me. She’s her own little person with her own personality, and I need to be careful not to project my own fears and neuroses onto her. I need to step back and let her shine.

sun