Monday in the Park with Lilly

playground

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.

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!

Keep Stabbing

My Writing Journey

Reassurance can come in some strange ways, sometimes.

Lilly  has been struggling with urinary tract infections (UTIs) for some time now. Every time it seems we have a handle on it, it comes back, like some monster that won’t die. I’m starting to suspect that the bacteria has begun to build a resistance to antibiotics. She just finished her latest round of cephalexin a few days ago; now she’s complaining of pain in her lower abdomen again, and pain with cathing.

Fed up with going to the doctor only to have more antibiotics prescribed, I’ve decided to try a different route: D-mannose. It’s a concentrate of the active ingredient in cranberries that helps with UTI’s. It’s better than drinking gallons of cranberry juice (which Lilly doesn’t like) with all the sugar in it that can cause more problems. I asked for advice on the spina bifida support group that I’m…

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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!

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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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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