Of Bullies and Besties

Raise your hand if you’ve been bullied or picked on as a youth.  Yeah? Me, too. And, for me, it was just over “normal” stuff, like being overweight, wearing glasses and being nerdy, and…well, when all else failed, just existing as a grade school female.  Those of us who have been bullied know that it really does suck. And, those of us who have kids who wear braces, who may not stand perfectly straight, or who bear large scars down the length of their backs – well, these can just make them fodder for more abuse from their peers.

We, as a Scoliosis family, have been blessed. Both of my kids wore a brace to school at one time or another (for my daughter, it was 6 years), and they claim (and I believe them) that they were not bullied once. NOT ONCE!  That is almost inconceivable. But, in our teeny tiny town, where the kids’ classrooms more closely resemble a family gathering (and many times, the classrooms ARE literally family gatherings), they all know each other very well.  This can be a blessing and a curse, but I think it was a blessing in our case. Some kids are still not the nicest, but they all have issues – and they all know each other’s issues. So, if you want to throw a stone, it won’t be long before the stones easily come back to you.  But, in addition, I genuinely think that, like any family, these kids really care about each other. So, they may not always be happy with one another, but they don’t really want to hurt each other deep down.

Many of the people reading this article, however, HAVE experienced some nasty bullying – or, just plain teasing from peers.  It’s very hurtful and it can make a child feel very alone. I’m here to say, though, that all it takes is a few besties – one or two REALLY good friends to align with, and life feels a whole lot better.  You don’t need to be the most popular kid in school, you just need those few friends that you can count on – no matter what.

My kids both have that small tribe of friends.  My daughter is graduating this year and leaving her tribe to go find new allies, but these girls, pictured below, have been so important to my daughter and to our family, that I wanted to recognize them.  They don’t judge each other, they support each other’s quirks and idiosyncrasies, and they encourage each other in school, rather than compete AGAINST each other. I love them like they are my own kiddos – after all, I’ve seen 3 out of 4 of these girls grow up since preschool – together.  

 

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Besties (L to R) Shelby, Faith, Cynthia, and Tristen

If your child comes home discouraged because they were made fun of for something related to their Scoliosis, I can’t give any better advice than the old cliche’ – “If they are making fun of you, you don’t want them for friends anyway.”  It’s cliche’ because it is absolutely true! But, I would recommend taking a few more proactive steps. The next step I would recommend is to ask your child, “Who seems nice that you DO think would make a good friend?” and then maybe plan something special for your child and that other child to do together.  Friendships can grow with just a little water and fertilizer. So, instead of focusing on the “rotten vines”, cultivate the good ones, and turn those “bully” tears into “bestie” talks. Once they find their tribe, the naysayers will fade into the background.  

I pray that all of your children can find their tribe of besties, just like my daughter has with these girls.  To Faith, Shelby, and Tristen – this Mom thanks you for everything you have been to my daughter, is proud of everything you have accomplished to this point, and is excited for everything you will do to make a positive impact in the future.  And, those in the tribe who are not pictured (you know who you are) – the same goes for you! Congrats to the Vikings Class of 2019!

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Cynthia chose a backless prom dress – to show off her well-earned scar!

Young Gymnast and Scoliosis Patient Spreads Hope

Ellie Ruth 2

Ellie-Ruth is one very determined 11-year-old.  Diagnosed with Scoliosis at age 9, she and her parents were faced with the choices that all of us are faced with: which treatment options should we choose?  And, how will this affect our child’s daily life from here on? But, the one thing that Ellie-Ruth and her parents knew she could never give up was gymnastics.  Ellie-Ruth was very involved with and passionate about the sport from a young age, and she was determined to continue to reach for her goals, regardless of her diagnosis.  Her parents found specialist Dr. Kris Lundine, who is currently with the Epworth hospital in Richmond, Victoria, Australia, and Ellie-Ruth began treatment with nighttime Rigo-Cheneau bracing and Schroth Therapy.  While some children are advised against continuing gymnastics with scoliosis, Ellie-Ruth’s specialist took a different approach, focusing on the advantages of her staying strong, especially in her core.  Ellie-Ruth’s Mother, Diane, appreciates the fact that she found a specialist that does whatever is necessary to avoid surgery and one that supports her daughter’s goals.

Ellie-Ruth continues to work on her treatments, and currently visits her specialist every 6 months.  Her curve is holding at 44 degrees. Her hard work with gymnastics has also paid off. Competing in numerous competitions across Melbourne, Australia, she has achieved 6 Gold Medals, 5 Silver Medals, and at least 4 Bronze Medals.  She also qualified for the Victoria State Championship last year! Clearly, she does not intend to let Scoliosis stop her! “Gymnastics to me is my life,” says Ellie-Ruth, “I have got a curve, but that doesn’t stop me from what I love.”  When asked what she would say to other young Scoliosis patients like herself, she responded, “I would tell them to never give up on your hopes and dreams.” We thank Ellie-Ruth for sharing her inspiring story and her message of hope with us all.  She is proof that you can continue to work toward any goal while battling Scoliosis.

Ellie Ruth 9

 

A Journey Through Flatback Syndrome

Leslie Hamilton Perry was first diagnosed with Scoliosis at age 13.  Within a year, in 1973, she had her first surgery, where surgeons inserted Harrington Rods to help straighten her spine.  This solution kept her relatively functional, until 2005, when she started bending forward. Over the next year, she found the condition steadily worsening, until she was fully bent over.  

Before surgery

In 2011, she was diagnosed with flatback, which is a condition in which the lower spine loses some of its normal curvature, which can shift the center of gravity too far forward in the body.  The result is that the patient can have trouble standing upward. It can also cause chronic pain and the loss of ability to do daily tasks.  After her diagnosis, she had rod removal surgery, followed by a third surgery in the same year. Neither surgery helped. After living in pain for a decade, she found revision specialist Dr. Matthew Geck and traveled from her home in Mississippi to Austin, Texas for a grueling 13 hour surgery.  Afterward, she was finally standing upright and felt like she had her life back. Later, she followed up with a 5th surgery to extend the fusion further up, to T2.  

 

After surgery

Dr. Geck
with Dr. Geck!

In an attempt to help others like her, Leslie joined forces with Carolyn, another patient of Dr. Geck’s, to form a Flatback support group on Facebook.  The group already has close to 500 members, but Leslie and Carolyn want to continue to spread the word so they can help others through support, information, and encouragement.  When asked how she managed to cope for so long with constant discomfort and difficulty, Leslie said she did so by taking it one day at a time. She waited 6 years to get a diagnosis and to find the right Doctor to help her.  I think we can all learn from her the value of never giving up.

Leslie’s greatest piece of advice is that “you are your own best advocate. If you think something is wrong, it probably is. Get several opinions on treatment options, and when surgery is the only option left, find a surgeon who specializes in Flatback Syndrome revision/ adult Scoliosis.”  I would add that you should also go and join her facebook group.  We can all be better off if we reach out and seek help from those who have gone before us.  Thank-you to Leslie for sharing her story!

Leslie and Carolyn
Leslie and Carolyn

For all the Scoliosis Queens (and Kings)

This has been a very busy, but wonderful year for our family.  Our original Scoliosis Warrior – our daughter – is now a Senior in High School!  She was diagnosed with Scoliosis at 5 and I started this blog 10 years ago to help others learn from our experiences.  How far she has come!!  Well, this winter, she surprised us by deciding to run for Coming Home Queen.  Up to this point, she has had zero interest in things like this, but she wanted to run so “at least one female basketball player would be on the court”.  So, we got her a pretty dress (that laid wonderfully on her not-so-straight upper body) and some mega heels (that she walked in with total grace) and got ready for the big day.

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She is not only the ONLY senior on her varsity basketball team (yes, we live in a VERY tiny community), but she is a captain, and helped lead her team to a victory on the basketball court that night.  Then, she ran and got her clarinet, helping the band to play the National Anthem.  Then, during the first half of the Boys’ game that immediately followed, she cleaned up and transformed into her “Queen Look”.  And, yes, at half-time of the boys’ game, she was crowned Queen.  I was proud of her – not just for winning (which is voted on by the middle school and high school students and staff), but for putting herself a bit out of her comfort zone to go for something new, that she had never thought to go for in the past.  Then AFTER the Boys’ game, they had the dance (that she helped plan, as President of the Student Council).  This girl has NOT let Scoliosis stop her ONE TINY BIT.  And, she’s never acted as though she were any different than anyone else.  I don’t know what it feels like to be in her body.  She barely ever complains of discomfort, but, since she has been battling this since she was young, maybe her “normal” just entails more discomfort than for some of us.  Regardless, she never ceases to be my inspiration…and my muse.  One of our biggest fears when our children are first diagnosed is if this Scoliosis condition will prevent our child from living a “normal life”.  We want them to be safe, secure, happy.  But, I would say, looking back, that it set her up to live a life that is ABOVE a “normal life”.  I would never wish challenges on my children, but I can recognize that they do make them stronger and more confident.  For all of you Scoliosis Warriors out there, who are hesitating to put yourself out of you comfort zone and try something new – I say just go for it!  Don’t let anything stop you.  Allow yourself to be Queen – or King – in whatever area you strive to be the best.

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Cynthia Speaks: Princess Eugenie Shows off her Scoliosis Scar.

~By Cynthia, 17, Scoliosis Warrior

Hey, everyone! It’s been a little while since I last posted an article, but it’s good to be back. Starting now, I’m hoping to publish an article every month about what’s going on in the scoliosis community. This month, I wanted to do a more personal piece, instead of a medical article or something like that. Recently, in October of 2018, Princess Eugenie got married to Jack Brooksbank. Now, unless you knew about the wedding and why I’m writing about it today, those names mean nothing to you. These aren’t the most famous royals, to me at least. I hadn’t ever heard of Princess Eugenie until my mom told me about her. To me, and many other scoliosis patients, this wedding is not exciting because it is royal. Rather, the excitement is over Princess Eugenie and her dress. Wedding dresses are one of the most visible and important parts of the wedding. Princess Eugenie had a beautiful dress, but it was especially beautiful because it showed off her scoliosis scar. She picked an off-the-shoulder dress with a low back specifically for that reason.

Now, for some backstory. Princess Eugenie is currently 28 years old, and was diagnosed with scoliosis at age 11. Whether or not she wore a brace is unclear, but she had to surgically correct the scoliosis at age 12. According to Eugenie, the most jarring part was the fact that her life would essentially be put on hold while she recovered, and not the fact that she would have a scar from the operation. After the operation, she had to wear a neck brace, and was very frustrated because she couldn’t move or play with her friends. Scoliosis doesn’t just go away after you’ve had a surgery, though. There is always a lasting reminder of what you went through in the form of a scar. Eugenie was apprehensive about showing hers off at first, but later grew to be proud of it. She became so proud, that she told her wedding dress designers that her scar absolutely had to be seen, and they came up with the dress we saw at the wedding, highlighting her scar beautifully.

Before I begin to share my own personal thoughts, I want to share something interesting. The woman who wrote the article I got my information from, Danielle Sheridan, also had scoliosis. In the article, you get pieces of Ms. Sheridan’s testimonial, intertwined with the story of Princess Eugenie, making the retelling that much more personal and real. She talks about feeling left out and the troubles that come with wearing a brace. She was the perfect person to do the interview and write that article. Most of us can identify with Danielle and Eugenie. We know the rigidness of a brace, and the feeling of confinement that comes with it. We know the feeling of uncertainty as you head into the operating room, not knowing what you will be like on the other side. We can identify with these people in our own ways, and that is so important in our materialistic culture. To see a well-respected woman publicly show off her scar with pride is amazing. She is someone we can point to and show young scoliosis patients, telling them that their journey can bring them a sense of achievement. We can tell young patients, and ourselves, that scars should be celebrated.  “Look at Princess Eugenie on her wedding day”, we should say, baring her scar to the world with a sense of pride, and the knowledge that she is a role model for so many others by doing so.

My scar has always been something that I was eager to show off, even before I got it, but I know that that is not the case for some. To those who hate their scars, or can’t stand the way they look in their brace, or feel like the pressures of society to look a certain way are stifling, look to Princess Eugenie. Even though she was brought up as a royal, and lived a far different life than most of us did, she still found the courage to show an imperfect part of herself to the world. I won’t tell you it gets better, because that means nothing from someone who’s already through the hardest part and has been for a while, but try to look at Eugenie and have hope. Even if you aren’t there right now, look at her and realize that it is possible to be proud of what you’ve gone through.

I may have gone off on a bit of a tangent, but I felt it was important. Eugenie, by doing something so simple as wearing a low-backed wedding dress, has become a role model. I wish I would’ve seen this when I was younger, but I’m thrilled that other young patients will get to see it. It’s important to have scoliosis represented, and huge to have this representation on a worldwide scale. So, to Princess Eugenie, I say thank you.

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Glimpsing Normal

Cindy Volleyball

This girl – #5 – she has been, and continues to be, my inspiration.  I think back to all the mountains of fear that I used to stare at, afraid to climb.  I think back to the worry – will she ever really, truly be OK?  I suppose we all worry about our kids that way, but when your child has a condition like Scoliosis, you really take a scarier ride on the worry bus.  My daughter was diagnosed at age 5, braced for 6 years, had surgery when she was 13.  She’s been through so much – but, you can see, it hasn’t slowed her down.  She is now a Senior in high school, and just finished up volleyball season.  She was a setter for the 5th year in a row, and a team captain.  She led her team well – communicating constantly, and always setting the best example she could.  My daughter doesn’t play much with excuses, and, even with 3/4 of her spine fused, she was still complimented by coaches as being one of the best setters they have seen.  It amazes me, really.  We have now settled into a tiny bit of normal (whatever that means). The huge mountains of fear are mostly behind us, and she really never missed a beat.  I can’t wait to see where her experience of Scoliosis takes her in the future.

Scoliosis Family Adventures: Out West Edition!

What a summer!  I feel like our heads have barely rested on our own pillows!  But, it’ s been an amazing ride.  It dawned on me last year that my baby girl is graduating soon (class of 2019) and that we needed one big, family adventure before then.  My husband and I had never been out west, so I planned a 10 day excursion, where we speed-tripped through various parks and landmarks.  We started by flying into San Francisco.  We August 2018 Blog 2toured the city for a few hours (remember, I said this was SPEED touring).  We spent the next day exploring Muir woods, just North of San Fran.  Then we went to Yosemite, thankfully before they shut the park down due to fires.  Following Yosemite, we went to LA/Hollywood, then Grand Canyon, then Zion National Park, and…finally…Vegas, from which we flew home.  Whew!  Lots of hiking, many times in crazy heat, sight seeing, TONS of steps on the fitbit.  Also, LOTS of driving and good, quality family time.  It had been nearly 10 years since I left my business (the real baby of the family) for such an extended time and I was very happy that my EIC Team back home took care of everything for me while I was away.

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It was really great, but, after 10 days, we were ready to get back to real life.  Real life can be real stressful, especially when dealing with Scoliosis.  But, we have to find time to work in these adventures so that we have the peace of mind to deal with the daily grind.  I was really grateful that my “Scoli Three” didn’t have any issues on the tripAugust 2018 blog 3 – between riding in planes, lots of time in cars, sleeping in a different bed every-other-night – I would have expected some flare-ups with their backs, but they did great.  We did make our son take his brace as a carry on – we weren’t willing to risk the airlines losing THAT piece of luggage.  He didn’t want to wear it on the plane, and, since he just wears at night anyway, we found a packpack that would fit the brace, and then put his carry on stuff in the middle of it.  It fit just fine under the seat in front of him!  If one of my kids were still full-time bracing, though, I probably would have told them to leave it in the hotel room for some of those hikes – they were so hot that those of us NOT in layers were cooking in our boots.  It’s all about balance – and, I was happy to find some balance by really investing in a good chunk of quality time with the family.  We can get bogged down in the day-to-day struggles, tipping the scales in our brains to stress overload.  But, by consciously making the effort to plan in the time together and, by compromising just a bit on the daily routine, we can bring that scale back to balance.

August 2018 Blog