Ok so I’ve been thinking about the question posed in the last post: What changes someone so much from thinking that there is no way they can do something to being able to do it? With flying colors? I mentioned Lucy and I had a good talk en route to the airport on Sunday about just that thing. We were relating it (among other things) to the fact that she and her cousin decided to give up desserts and candy for 2020. Yep, the whole year. The whole shebang.
At first the rest of us didn’t take that idea very seriously. That girl LOVES sugar.
But do you know what?
She is doing that thing! She has had a few hiccups. On Claire’s birthday as she sat amidst all the stuff I had prepared for the big surprise party (more on that soon), and she was positively gloomy. She didn’t feel like she could do that hard thing any more. She sent this text to her cousin on my phone:
Oh boy. Her cousin called her and they talked things through, and together decided they’d have three days where they could have sugar for 2020 (not sure where they came up with three, but they did). Lu decided that little tweak would make all the difference. Who knows where that will go…I personally don’t care if there are three days of desserts or 187, the fact that she is striving to do something tough is a beautiful thing.
I was thinking again about that question (posed in the post yesterday) when I was doing a workout yesterday morning. When I started all those kettlebell swings and hurdle jumps I thought to myself, “I cannot do this.” But you know what? I could. I just kept on going and I made it through. And even went up a little on the weights by the end. I don’t know why my belief in my abilities changed. Maybe just because I kept going.
It all circles back to the quote I love so much from my wise grandma:
“When you master the seemingly impossible, it does something for you that fits into your very character for a lifetime, and makes the next impossible thing seem that much easier.”
I’m hoping all that “doing the impossible” talk can help as we all continue to progress along this BBS journey we’re in the middle of. Oh, it won’t end. And even when we conquer something there will be something else ahead. But maybe it’s just a series of “impossibles” that we think are insurmountable until we “just keep swimming” and look back to realize the hurdles we’ve climbed.
Seventh grade is tough. Have I mentioned this before?? I know I have, but apparently I was unaware of this little fact in my former life with four children who have catapulted relatively easily over that hump. I took it for granted they could read their textbooks that they left strewn around the kitchen. It hardly even registered when they formed study groups when the going got tough studying for tests. Although they for sure shed tears over feeling left out, they could maneuver their way through social situations and took cues from others around them.
Things just aren’t quite the same with Lucy. Oh, she has the best helpers ever (despite the fact that she still continues to NOT want the help). She has gadgets she can listen to and she’s learning Braille quite beautifully despite being horrified when I ask her to feel the numbers on the elevator or type something on her Brailler (that makes her different, after all). The problem is, even if she uses all those things to help her, and she really is trying, her vision just keeps dwindling. And there will always be a new thing to learn, an unfamiliar hurdle to jump.
Lucy works endlessly on homework. And it is SLOW GOING! She has a special touch-screen computer but despite how cool it is, it’s increasingly more and more difficult for her to maneuver. And when her English teacher tells her to highlight text from a passage, she can’t even see the text in the passage let alone have the dexterity to highlight or tell the difference between highlighting colors for that matter. She is supposed to jump from one tab to the next to figure out assignments and she knows how to do it, and knows what to do, but it takes so incredibly long. She’s supposed to do math assignments on there but the font is so fine (even when enlarged huge) that she really can’t see it. The teachers, especially her special helper and Braille teacher are working their tails off to help her maneuver through school but one night as we sat huddled together trying to finish up her homework after she had worked since school was out until late, my heart just broke for her. Even with every light on as well as a little clip-on light on top of her computer, it was so tough for those eyes to see what she was writing.
Studying with her made me realize more than ever how difficult her gradually dimming world is as she struggles to maneuver her computer and any worksheets or study guides. It is a whole new ballgame and I was sick for her and what we could do to help over and over again. So when I got a text from her “helper” teacher that she got one B and ALL THE REST A’s I felt like my heart just might burst. She worked so hard and I was so proud of all she was able to accomplish despite all that she’s dealing with.
Doing the impossible right there.
Another impossible is that Lucy’s back is morphing itself alarmingly quickly into a large hump. So we took her in to check on her scoliosis and found that her curvature has increased quite dramatically over the last year and a half. It was at a 28% curve back then and although a brace was recommended, after much research and deliberation (with the doctor) we decided not to go that route. Oh, we’ve become pretty good at the art of cajoling for her benefit over the years, which has been worth the sometimes-gut-wrenching work (she is as stubborn as they come) when we can see the big picture, but when the doctor showed Dave and I that sample plastic brace for the first time we looked at each other and knew that with her texture issues we couldn’t touch that thing with a ten foot pole. We’d take the consequences. And it turns out the consequences were quick: the x-rays this time around showed a 52% curve.
The doctor let us know a brace wouldn’t have actually helped after all in this instance (kids with syndromes are a whole different ballgame, he claimed). So she will undergo surgery this summer to straighten her back and brace it with a rod that will have a 6-8 week recovery time. Below on the left is a picture of the type of rod they’ll attach to her spine:
…and on the right is a giant, ultra-vivid rainbow that greeted us when we emerged, a little downtrodden from our appointment at the hospital. To me, that beauty was a sign that this too would be ok. All of it. Lucy was strong and could handle it.
We’re planning on getting that done right when school gets out. You might think Lucy would be apprehensive about this thing looming on the horizon but she is pretty overjoyed actually. She is having some pain she can’t wait to get help with. But it’ll be a much bigger deal than she is aware of. All I know is that that girl knows how to do the impossible. And she knows that she knows it too, so she will survive!
Ok, one more example of a big “impossible” change that has become something beautiful: I remember feeling overwhelmed with complete horror when my BBS mom friend told me she did this clinical trial in Wisconsin with her daughter a few years ago. (She lives on the other side of the desert). She told me about all the travel and all the time it took. And I thought to myself, “Who in the world would do that???”
But here I am. We just got back from Wisconsin late on Monday night (it’s a quick turn-around). And as much as it IS a lot of travel, and sitting, and driving, and flying, and sitting for endless hours in that little room with hot air balloons painted on the walls and no windows, it is golden.
This time with my girl, time to talk and discuss and have sleep-overs at our little trusty home-away-from-home hotel room.
It is time taken out of the every-day. Time to make phone calls to people I’ve been out of touch with during all the driving. Experiences. That’s what it’s all about. And I’ve realized they sure don’t have to be glamorous to be golden.
Yes, there are delays. And yes, curvatures grow and get us out of whack. Not just with BBS, but with all things human. And it’s ok if they get us down. Hard things have a knack for doing that. But if we keep on going, we can make some big things happen. Especially when we remember to reach Up for help.