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delays and curvatures…an update on Lucy

by Shawni

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.

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32 comments

Cristy January 29, 2020 - 6:57 am

Oh, Lucy. 7th grade is so stinking hard. I had a similar surgery (in Minneapolis!) when I was just a bit older than Lucy and was blissfully unaware of how big of a deal it was. The recovery was TOUGH and there were lots of tears. With that said, I feel so fortunate that surgery was an option for me. In time, the pain subsided, the scar faded and I was finally able to do so many of the things that I had been unable to do before, due to pain from the curvature. Hang in there!

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Shawni January 30, 2020 - 7:33 am

Thank you for sharing, that is good to hear and makes me happy it worked so well. xoxo

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Elizabeth January 29, 2020 - 7:18 am

Oh, I’m so sorry to hear what a hard time Lucy is having! But I will say on this day I am having quite a hard time with some health issues, and hearing that 7th grade Lucy is battling through her much more serious issues certainly is inspiring and puts things in perspective. Way to go Lucy!

Has Lucy seen photos of Princess Eugenie’s wedding dress showing her scar from her back surgery for scoliosis?

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Shawni January 30, 2020 - 7:37 am

Just looked that up, pretty cool! And thank you for your sweet note.

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Lisa January 29, 2020 - 7:29 am

“Especially when we remember to reach Up for help.” Amen. Thank you, Shawni. Please tell Lucy many are praying for her surgery. For complete and quick healing. For strength. Lucy’s tenacity is an inspiration.

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Tarina January 29, 2020 - 10:26 pm

Shawni we absolutely need to speak ( again ) . We emailed a couple of years ago before my daughter Emma surgery and she is now 9 months post surgery with the exact same 52 thoracic curve as Lucy . Emma can help Lucy 🙂 and I can help you her mama 🙂 . I will email you and pls look out for it ? Warmly , Tarina

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Shawni January 30, 2020 - 7:38 am

Aw I’d love that! I’ll be on the look-out!

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Marcella January 29, 2020 - 8:53 am

I am so impressed with Lucy’s goal to cut out the sugar. It’s something I struggle with and it’s hard! She is doing so great it’s inspiring.

While not a substitute for surgery, you might consider pilates for Lucy’s scoliosis. As an instructor I’ve seen incredible progress in my clients. A good instructor can help Lucy stretch the compressed side and strengthen the weak side and it can help a lot with mobility and pain.

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Shawni January 30, 2020 - 7:39 am

I’m so impressed with the sugar deal too! Lucy is loving Yoga right now but we should also look into pilates to see if she can get more relief.

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CC January 29, 2020 - 10:01 am

As a 7th grade counselor, I am so with you that 7th grade is an incredibly hard year, especially when Lucy is dealing with these extra obstacles. It sounds like she is one strong and resilient girl. I wonder whether you’ve explored counseling (no need to answer that here, I know it’s a personal question). There are so many great ways to do counseling these days — groups, art therapy, play therapy, etc. — and there are likely groups for other kids with a diagnosis or disability. I only mention because I’ve seen how much of a difference it can make when counseling is available early and presented “casually” to kids (as opposed to something you only do when you have big problems). I hope Lucy’s surgery goes well and provides her with plenty of relief.

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Shawni January 30, 2020 - 7:40 am

Yes, therapy is really helpful. Lucy has tried a couple different therapists who I think have helped, but I think group therapy may be really helpful as well!

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Megan January 29, 2020 - 10:36 am

It doesn’t have to be glamorous to be golden. Thank you for that. It’s spot on!!

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Lissa January 29, 2020 - 10:42 am

Oh Shawni…..Thanks for sharing such a personal post. I am often curious from a medical standpoint how things are going for her. So many good thoughts for you and Dave as you guide Lucy through 7th grade and her medical issues. There really is something about 7th grade that can just flatten girls. And I’ll think about her as I ponder my own sugar addiction. I’m the age of her GM and she’s teaching me about making good choices!

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Shawni January 30, 2020 - 7:41 am

🙂

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Madeleine January 29, 2020 - 10:52 am

Lucy: so many of us strangers on the internet have been following your mom’s blog for years. We are all big fans of you and admire your strength of character. We are cheering you on, holding you in our hearts, praying for you, and celebrating your (many!) successes. It may seem strange that so many strangers care about you – yes, you specifically – but we do. We see you and we are so proud of you. You will move mountains.

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Shawni January 30, 2020 - 10:58 am

Thank you Madeleine, for sending this love to Lucy.
xoxo

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Susan January 29, 2020 - 10:52 am

7th grade is tough! But she will get through it with flying colors! As for the surgery, a friends daughter went through this last year. She did great, and so will Lucy!!

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Flavia January 29, 2020 - 11:14 am

Lucy is amazing and I’m sure the surgery will be great for her. I have a 7th grader and she’s struggling with Math, so well done Lucy for getting all A’s. Sending lots of love to you all.

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Carley January 29, 2020 - 2:06 pm

Hi Shawni and Lucy!
I was diagnosed with scoliosis in the 6th grade. By the time I got to a specialist, my curves were too severe to brace. I underwent spinal fusion surgery at the beginning of 8th grade when I was 13. Lucy, I totally relate to the relief of having the surgery on the horizon to relieve the pain! This November will be my 10 year spine-aversary, and I enjoy everything I did in life before, just without bending my back! I am fused from T2-L3. I was in the hospital for 6 days and 5 nights, and was out of school for 6 weeks. You can do this!!! If you have any questions or want to talk, I am happy to do that! Also, check out Curvy Girls Scoliosis Support Groups – these are peer led support groups that generally meet once a month. I was a leader in my city for a little while! Take care, Carley

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Shawni January 30, 2020 - 11:00 am

xoxo, thank you Carley!

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Andrea January 29, 2020 - 2:12 pm

Hey Lucy! I’ve been following your mom’s blog for years and she has helped me A LOT with her stories and perspective. Today’s my birthday and one of my wishes will be for you! I will be praying for you but I know you will do great!!

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Shawni January 30, 2020 - 11:02 am

Aw thank you Andrea, and happy birthday!!!

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Marguerite January 30, 2020 - 3:16 am

Oh, sweet Lucy. My prayers are ascending for you all. xxx

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Jenny also January 30, 2020 - 6:18 am

Lucy is brave and strong.

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A January 30, 2020 - 8:33 am

My brother in law had that surgery right after high school, before college. You’re right that it’s a big undertaking, but it has made all the difference in the world for him. Like Lucy (I think), he didn’t have a choice–the pain and the growing curve necessitated, but the results have been well worth. Best of luck!

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Shawni January 30, 2020 - 11:01 am

Thanks for all the Love, Lucy feels it! (And so do I). Sending lots of love right back out.
xoxoxoxox

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Becky January 30, 2020 - 8:01 pm

Have you checked out VBT as an alternative to fusion?

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Shawni February 6, 2020 - 2:00 pm

Yes we spoke to the doctor about this. He doesn’t recommend it because of Lucy’s age and where her curve is.

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Marie January 31, 2020 - 7:45 am

Thank you for sharing this. You always have grace whether you post good things or not so good things. Praying for Lucy. 💖🙏🏻

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Shawni February 6, 2020 - 2:00 pm

Thank you Marie.

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Marnie February 5, 2020 - 8:32 pm

As you share more about Lucy’s impending blindness I have felt strongly to share something with you. I was wondering if you knew who Kris Belcher is? I think you might possibly know who she is because she has done several Time out for Women events and written a few books. If you don’t, she lost her sight at the age of 31 when her second child was only 1 year old due to cancer that she had been fighting since she was 7 months old. She recently passed away due to her cancer returning and being metastasized throughout her body. I knew her personally and she was an incredible example of Christ like love, and knowing how to truly trust him and turn over your burdens to him. I just have been thinking a lot about Lucy and couldn’t stop thinking that I needed to share this with you. For all I know, you’ve already read all her books. Here is a link, just in case:
https://deseretbook.com/products?keywords=kris+Belcher
Her first is “Hard times and Holy places”.
Honestly, I have not read them, but am planning to this year. Please tell Lucy that I admire her and her strength to endure so much for a young girl. Thanks for sharing your family and adventures with us. 🙂

P.S. So excited for Elle!

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Shawni February 6, 2020 - 2:03 pm

Yes I actually spoke at Time Out for Women with Kris years ago and she was so wonderful. She is definitely one who has found holy places in hard times, and I really appreciate you bringing this up because I haven’t read any of her books. I’m sure they are fabulous. She sure left a beautiful legacy. Thanks so much for thinking of that and sharing with me.
xoxo

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