This week we actually took a trip that did not revolve around treatments or brace adjustments, but that revolved around family – my 87-year-old Grandmother, to be exact, and the rest of my Mother’s family that resides in the Evansville, Indiana area. It was our first visit since Grandma moved out of the house I’ve been visiting for the past 34 years and into an apartment attached to the nursing home. I’m happy she’s in the apartment, as she recently had a hip and shoulder replacement done. So, we headed down to a local Fairfield (with an indoor pool, of course), as did my brother and his wife, and we had a great time relaxing in the pool, eating barbeque, and visiting with family. My kids discovered the game “Apples to Applies – Disney version – and loved it. Our visits to our “Southern family” have gotten further and further apart since my Mother died, but we were overjoyed to see Grandma and to keep the kids connected to her side of the family even while she’s gone. My kids are expert travellers from all the road trips we’ve taken, and we enjoyed listening to the final book of the “Peter and the Starcatchers” series, while “V” worked on LEGO creations and “C” and I learned the art of hook rugs and needlepoint. I hope all of you can take a few minutes this holiday season to remember what it’s like to be a family WITHOUT Scoliosis (or any other disease) and just enjoy each other as you are. This month will be frantic for us – I am directing a Christmas musical at my church and trying to launch a couple of new products, while Andy is keeping up with the basketball season as Athletic Director, his regular teaching schedule, and being CFO of my growing company. “C” is one of the lead actors in my show, and “V” is in the chorus, in addition to their normally busy schedule. So, we will be busy just being a regular old family – and I can’t wait! Happy Thanksgiving and every other Holiday between now and the New Year! Enjoy the ride.
This is definitely a week to be thankful – most of us get a nice, extended weekend (BIG thing to be thankful for). Some get to travel (we are going on a 9-hour drive to the Southern tip of Indiana to see my Grandmother and my Mother’s family). Some people get to relax and have dinner at someone else’s house – while others experience the joys of hostessing family at their own homes. Whatever the Thanksgiving experience, most of us can find several reasons to be thankful. But, can we be thankful for our trials as well as our successes? That is one of the major challenges of life, to be sure. Whether it’s Scoliosis, financial troubles, a loved one passing away, or any other of a myriad of potential problems, one thing is certain – it’s very hard to be thankful in the midst of trials.
The Bible says, in James 1, to trust God during trials – that going through trials produces patience and perseverence. Now, one thing we CAN say about Scoliosis is it requires a very LARGE dose of patience! Almost ALL treatments require waiting – waiting for the next x-ray, waiting to see if you’ve gotten better or worse, waiting for a treatment to work (or, maybe NOT work). Hand-in-hand with that is perseverence, of course. Treatments will not work if we don’t commit every day to making them work – we have to bite off a small chunk of dealing with this disease every day, or we fall behind to the pull of our spines. Plain and simple.
I can say that dealing with Scoliosis with my children has also taught me to weather storms more gracefully. Other problems just seem smaller now – when we first got my daughter’s diagnosis, I was in a panic. A worrier by nature, I worried, researched, fretted, read articles, scheduled appointments – I wanted answers and NOW. But, it doesn’t work that way. Scoliosis is a lifelong disease and a lifelong trial, but we can weather it gracefully and let the other smaller problems (that may have seemed large before our diagnosis), kind of float on by.
So, whatever your trials, tribulations, or pain, I hope that you can find something this week to be thankful for – if not, just know that I am thankful for YOU, the reader who takes the time to read my ramblings and I pray for your health and healing! Post a reply and tell me: Has Scoliosis taught you to be thankful for something?
My husband and I went to a wonderful one-day conference this past weekend put on my Dr. Randy Carlson. Many people may know him through his radio show on Family Life Radio, among other things. The conference was about strengthening the parenting and marriage bonds. I thought it would be educational to attend, not because we are having issues in our family, but because I think we all need some continuing education when it comes to our family bonds. Just because things are good, doesn’t mean they can’t be great. I thought some of the concepts discussed might be helpful when dealing, not just with any family dynamic, but with families dealing with medical difficulties such as Scoliosis. I want to focus on what Dr. Carlson called “The Big 4 of Parenting”. Since many readers are parents of Scoliosis patients, I thought it might be helpful to take “The Big 4” and relate it to that experience.
1. You and I attract who we are, not what we want – if we want healthy kids, we need to be healthy ourselves. If we want self-confident girls, secure in their beauty regardless of how they look on the outside, we need to emulate that ourselves. We can’t just demand they feel or act a certain way – we have to show them how it’s done.
2. Parents need to get on the same page – discuss treatment options with your spouse before presenting them to your child. Have a unified front, and, if you disagree on some major issues (surgery vs. bracing? Ugh!), then perhaps seek counseling to determine a unified course of action before presenting it to your child. Or, maybe a compromise – try bracing for a determined length of time, then consider surgery. Regardless of the issue, parents need to be on the same page. And, if you are not together anymore, you can still unite when it comes to your child’s medical needs – remember, this is about what is better for your CHILD, not what is most comfortable for you as parents.
3. Be solution focused (don’t dwell on problems) – when you have children with any kind of disability or disease, it can be easy to make allowances for that disability. It’s important, however, after a certain length of “pity party” – grieving is healthy after all – to explore solutions together (please reference #2) and focus on what your child CAN do instead of what they CAN’T do anymore. And, when solutions don’t exist – create them together. We did this when we created the EmBraced In Comfort Bodysuit and it made all the difference. Believe me, I considered options that I never would have considered otherwise (homeschooling?! That one was a VERY short-lived idea), but we decided to create a solution that would work for her and, now she’s as confident and competent at school as every other child. Working through these problems will increase a child’s overall self-esteem and ability in the future.
4. Be consistent. – this one is very hard for me. But, consider consistency in the sense of the LONG RUN – we need some inconsistency when dealing with the first diagnosis, changes in diagnoses, and when Doctor’s appointments roll around – we may change treatment based on how the curves or illnesses are progressing or make certain allowances if our kids are experiencing a significant amount of soreness one day over another. But, for the most part, our kids need to be kids and learn all the things that growing kids need to learn – with the addition of a medical challenge. Creating consistency in their lives will show them that they can overcome hurdles and obstacles and still get back to the business of life like any other child. It will also teach them that they need to behave and work hard, despite their disability.
Mostly, we have to give them the love, respect, and confidence that they CAN handle this disease. That, this isn’t a wall to their future success, but an obstacle. I pray for parents every day dealing with children with medical issues – it is my prayer that their (and your) family can be strengthened by the experience instead of weakened.
I noticed something disturbing the other day – Halloween costumes, which I used to equate with cute, clever, and fun, are more and more becoming dirty, sexy, and desperate. I guess I missed when the actual metamorphosis took place – but, looking at some pictures of college students at Halloween parties, I realized that it was just another excuse for a girl to show off her body and get the attention from their male counterparts that they so crave. But, what I don’t get is why these young women (and young girls) have such a low image of their bodies? Now, there is one camp in the current culture who thinks that girls are now wearing sexier outfits as a result of their abundance of self esteem. Author Jean M. Twenge, who wrote “Generation Me”, was quoted in an article by Karen Monget, in the 6/21/2010 issue of WWD magazine, saying: ” One would assume that a girl who wants to dress provocatively has low self-esteem. It’s the opposite. Girls now have traits of self-centeredness and wanting to get attention. With eight-year-olds now, it’s brazen self-confidence, and often the culture is putting a big influence on them. They’re seeing it on TV and they’re influenced by a celebrity culture.” However, when I see young girls and women flaunting their bodies, it screams more of a desperation for attention rather than a raised level of self esteem. They may think more highly of the look of their bodies, and not mind showing them off, but why do they not feel more highly of the worth of their bodies? Why have their bodies become devalued to the point that they are available for anyone to see? And, furthermore, why are the 8 and 9-year-olds motivated to show off their bodies before they can actually fully realize their sexual allure. One reason is that they are shown that society views what is fashionable as being beautiful. And, since fashion is becoming more provocative, the natural tendency would be to follow along blindly in pursuit of fitting that image. Another, though, is simply a misconception of what beauty is.
In the case of my daughter, who is a 9-year-old girl who wants to be fashion conscious, but who also wears a Scoliosis brace, this would seem to present a lot of challenges for us. But, frankly it has not. “C” likes to get glamorous and dress very feminine, through wearing pretty dresses every day, accessorizing with jewelry and, occasionally getting to wear a slight lipstain to special events. But, she doesn’t feel appropriate about baring her body – even when out of the brace. She doesn’t even want to wear bikinis at the beach. As her Mother, I don’t mind this one bit (her Father thinks it is fabulous). But, if I look further into the deeper reasons she may choose modesty, I see two things. First, she has always worn the brace, so she always dressed to cover it – and, covering a brace requires modesty. Secondly, though, she has not been exposed very much to popular culture. We don’t have cable television, she doesn’t go to the mall more than a couple times a year, we don’t let her explore the internet on her own, and she is in bed by 8 (before network TV begins). However, she does read – a lot! But, books like Twilight, Harry Potter, Guardians of Ga’Hoole, and Nancy Drew – again, all based on a person’s value by their skills and intelligence, not by their provocative dressing style. Even Bella, from Twilight, who has many psychological issues, is at least a conservative dresser.
So, I am curious as to whether bracing will effect the young adolescent for better or worse over the long run. One Spine Journal article from back in 1987 reported on a study performed on 50 girls, post-treatment for scoliosis. The authors compare the body image of these girls with a group of girls without scoliosis, and the surprising results were that both the post-bracing and post-surgical Scoliosis patients reported a higher body image than the control group (non-Scoliosis) counterparts. Another article, from a 1989 issue of Spine, reported that psychological distress between Scoliosis patients and the control group (non-Scoliosis) participants were the same. But, the article went on to mention how the parents’ view of the disease had much more impact on the psychological impact on their daughters than the disease itself.
These findings make me wonder just how much more adolescent girls, both with Scoliosis and without, would benefit from a better example from their parents? I know I am pretty critical of my own body and I know this is not good for my daughter’s outlook, but could dressing in a provocative way have the opposite effect? Could it help our daughters accept a lack of modesty as the way society expects women to dress and glorify it to the point where they think the amount of confidence (in this case: flesh) they show is their inherent value? I think we, as parents, need to worry less about if our daughters will be psychologically scarred from wearing a Scoliosis brace (or having other Scoliosis disfigurements) and worry more about developing their inherent perception of the value of their bodies. I always try to go back to my ultimate authority – the Bible. It is there we can see the value we were created to have. 1Peter 3, vs 3-4 states: ” Your beauty should not come from outward adornment, such as braided hair and the wearing of gold jewelry and fine clothes. Instead, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.” Proverbs 31, v 25, states, when describing the ideal woman, that “She is clothed with strength and dignity.” It, oddly enough, does not mention the size of her thighs. Is it ok to put some time and effort into how we look and try to be healthy and in good shape? Yes, because we are treating our bodies like a temple and taking care of it. And, I think it is ok to take pride in a beautiful garment and feel good about your appearance. But, it’s not the most important thing. And, the more we learn this, the more we can teach it to our daughters. Their bodies are too valuable to give away to any set of eyes that pass them by. THEY ARE BETTER THAN THAT! 1 Corinthians 3, v 16-17 says: “Do you not know that you are God’s temple and that God’s Spirit dwells in you? … For God’s temple is holy, and you are that temple.” Our bodies and the bodies of our daughters are not just valuable – they are as sacred, important, and holy as a temple. That is pretty awesome and not something to be given away cheaply, whether you are in a brace or not, or whether it’s cool or not on Halloween.
Well, it ocurred to me that in between doctor visits and sewing bodysuits, I wasn’t taking enough time to communicate with others – in other words: sorry no blog posts lately. But, then I thought again about how my intermittent and infrequent blogging is like the disease of scoliosis – kind of a drawn-out, slow process where you have to aquire a bunch of information REALLY FAST only to sit and wait days, months, years, lifetimes – to see how the disease progresses. I guess we are in that stage where we are in a good rhythm – “C” is still holding at about 50degrees with her Cheneau, is comfortable wearing it 22-24 hours a day (especially now that it’s getting colder outside) and we have a closetful of dresses and bodysuits to help her stay stylish, comfy, and glamorous. So, I guess there’s not much to say – once you get in a rhythm with this disease – the thrice-yearly ebb and flow of x-rays, therapy, checkups, brace adjustments – then all you CAN do is wait. But, I’m vowing to spend a little more time in the near future blogging on things that might help your lives a bit more. So, those of you who are in the crazy stages of the onset/discovery of the disease or the bumpy times where change in the x-rays create a change in the plan, I’ll try to give tips, tricks, advice, and support on a much more frequent basis. As always, email me or post a reply if you have questions, needs, or concerns. I’m happy to help.
In the meantime…happy living to everyone, while you anxiously wait on this disease…