At least it’s not cancer.

“At least it’s not cancer…”  How many of us have heard this when we inform others that our child has been diagnosed with Scoliosis?  How many of us think this ourselves?  Or, maybe the flipside – “At least it’s JUST Scoliosis.”

I have seen cancer touch so many people’s lives over the past year… I’ve seen a young family member walk through it successfully, I’ve seen another friend whose child is newly diagnosed facing uncertainty, and I’ve had a friend diagnosed and pass away within a month’s time.  It’s a nasty disease.  And, honestly, I am grateful every day that I don’t have to fight this battle with my child.  The people who walk through this every day are warriors of a level more admirable than I hope to understand.

However, Scoliosis is also nasty.  And, it’s hard, and it’s a long, drawn-out, difficult childhood for our kids for other reasons.  It’s not JUST Scoliosis.  So many times we try to stifle our feelings because we don’t feel JUSTIFIED feeling bad when our child is dealing with a life-long yet (normally) not life-threatening illness.  We think we don’t have a RIGHT to find it hard or to be sad or to grieve the loss of a childhood lived outside the bounds and constraints of whatever we are using to fight this “curve that never rests”.

We need to stop putting our pain on a scale of 1-10 and feeling we only deserve to feel it when it’s a 10.  We can simultaneously be grateful and fearful or relieved and disappointed.  Our emotions are not black and white, they exist in a swirling whirlwind in between and never quite settle into stillness.  If you are dealing with a new diagnosis, or are living the long-term battle that Scoliosis brings, allow yourself whatever you are feeling.  Lean on those who don’t try to talk you out of those feelings, but who let you be in them for a while.  Then, get back to the fight until the time comes where you need to stop and grieve again.  It’s a cycle, not a straight line.

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DONE with bracing! Finally.

We had a checkup with Dr. Li at the University Of Michigan O&P on Friday, which was incidentally my son’s 16th birthday.  As she predicted the last time, he was given the great news that he is DONE with bracing!  He’s been bracing on and off for about 10 years and our family has been bracing two kids on-and-off for about a dozen years or more.  So, he is very happy and we are, too!!

Take note, parents of long-time bracing: I can’t actually remember how long we’ve been bracing, which is a GOOD THING.  Someday you will stop counting the days until they are “done” and life just takes over and the new normal kicks in and “all of a sudden”, your kids are grown and you are done bracing.  I wouldn’t recommend rushing the first part, even if you can’t wait for the second part.

So, happy 16th birthday to my son. We are grateful for the best gift every – an end to bracing AND a spine that has stabilized in the upper 20s/lower 30s.  And, one where both his curves match, so he is “symmetrically crooked”.  We will TAKE IT!

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Bye Bye!!

Celebrating a decade of support

It is amazing to think what can happen in our lives in a decade.  Just over 10 years ago, I was dealing with a Scoliosis treatment plan for my 7-year-old daughter and trying to figure out how to make life work in the confines of bracing.  I was where many of my readers are now, or at least where they have been at some point.  I was “just a Mom” (as a pompous Doc in the Scoliosis industry pointed out), with an idea to make my daughter more comfortable through some contraption that I threw together on my old home sewing machines.  I never knew what God had in store.  Yes, I feel that only through the working of God could my youngest “baby”, EmBraced In Comfort, have become what it is today…

Today we, at EmBraced In Comfort, are flourishing – helping people all over the world.  We have a large line of undergarments that we offer for all shapes and sizes and for both the female and male bodies.  (That can be attributed to my son going into a brace when he was 6, too).  We started out in my home, and, once we grew and took over my personal space, we moved to one other building and quickly outgrew that before we moved into our current location several years ago.  We have had ups and downs, team members come and go (some happily and some not so much), and we’ve even had heartbreak when patented ideas and designs were “closely mimicked” in the industry.  I’ve had to learn everything, including how to patent an idea, how to design a website,  how to understand issues around textiles and design, and how to be an industrial sewing machine mechanic (yes, I’m certified in most classes of machines).  I’ve gone back to college to take textiles and design courses, read textbooks on subjects I needed to learn, and reached out to experts who knew more than me to help guide me (a practice I will always continue).  But, what I’ve had to learn the most is how to rely on God more and more, as I navigated (and continue to navigate) challenge after challenge.  It has not been easy, but it’s been rewarding, and mostly because of the people I’ve met along the way.

Suffering people were the entire reason I started this adventure.  And, comforting suffering people is what keeps me going.  It’s not about the money, although I’ve slowly bootstrapped to where I am now and been able to come out ahead most years.  It’s about the people – the people who, every time I’m just too frustrated and ready to quit, call me or text me or send me an email to say Thank-You.  People who tell me that their child was crying one day, with sores and bleeding from the rubbing of the brace on her skin, and that after putting on one of our shirts, her daughter was fine.  What a miracle that we are blessed to be a part of!  These words of encouragement always come at just the right time and it has – truly – been what has kept this business (and me) going all this time.

The next 10 years are a promising mystery, but I am currently pursuing a new call – to become an ordained Pastor in the ELCA (Evangelical Lutheran Church in America).  I’m attending Wartburg Seminary at a distance, while I continue to service my customers.  God called me 10 years ago to comfort a hurting people in the best way I knew how, and God knew that nothing motivates a Mom like seeing her child(ren) suffer.  This business is, and has been, a genuine calling.  And, we are not done.  But, now God has called me to more – and, this journey of learning through seminary is just the beginning.  I look forward to seeing where we continue to go in the future.  As always, I and my fantastic team (more about them later) are here for you!  Just reach out.

Blessings,

Tina

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Me and my two inspirations! My Scoliosis warriors.

Fading, but not fading away

We are just a few months away from one of the best milestones I can imagine – the finish line for Scoliosis treatment!  That’s right, after over a dozen years of treatments for my two kids, we are almost D-O-N-E.  My daughter “graduated” from treatment when she turned 18 recently, and my son received word from his Orthopedic surgeon at his last visit that he will be done bracing around his 16th birthday (in February).  Each child was in treatment starting at age 5.  We’ve done it all – “wait and see” (please don’t do this), Spinecor (also, not a big fan), Schroth, Scolismart, Rigo-Cheneau, Boston, and … the most dreaded of all…fusion surgery!   The good news is that I’ve been writing about it for almost the entire journey and you can see that, through the ups and downs, we have ended up on top.

My daughter had to brace for 6 years, only to have surgery when her curves reached 97 degrees.  Was it tough?  Yes.  But, she is doing GREAT.  She has very little discomfort, played 2 sports in high school (including being a volleyball setter), and is doing GREAT at college.  She is very happy and treats her scars as trophies of her hard work.

My son will finish up around 30 degrees and we are fine with that.  He hasn’t required surgery and, God willing, never will.  His pain is also very minimal (if any) and he looks just fine cosmetically.  He can’t WAIT for his time in a brace to be OVER.  And, who can blame him?

My husband has been battling scoliosis since he was 16.  He never braced or got any type of treatment, preferring to play sports and not be incumbered by a brace.  He feels pain if he lets himself get out of shape or gain too much in the “spare tire” region, but, otherwise, he’s been doing great at about 35 degrees for all these years.

This is part of the reason I don’t write as much.  We are blissfully at the “end of the road”.  There is just not as much about our journey to blog about.  Although, we won’t ever be “done”.  We all know that Scoliosis is a lifelong condition and that they will all need to be diligent with self care.  But, we are nearly out of the most stressful part and I can tell you that it feels nice.  I will continue to blog, because Scoliosis has been a part of my life for so long and I want to be a support to those entering the journey.  There is still much to be said.  Also, my business EmBraced In Comfort isn’t going anywhere. We are not going to stop on our mission to help as many Scoliosis brace wearers as we can!!

So…comment below…what are some topics you’d like to hear more about from a Mom who’s been through it all (mostly)?  I’ve been living in this world for a dozen years, so let me help guide you through the process.  I have been, and will continue to be, here for you to help you along in your Scoliosis Family Adventure.

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My three Scoliosis Warriors – looking to what lies ahead!!

 

Don’t Blink

Well, she’s gone.  Off to college – my first born, my first Scoliosis warrior.  Our jobs as parents are to work ourselves out of a job.  We WANT them to become independent and capable and ready to spread their wings and fly – yet we also want them close.  I am overjoyed and excited for her – she is doing great at college.  Great roomate, great school, new friends – I couldn’t be more at ease with her situation there.  But…she’s still not next to me and it’s uncomfortable.  We don’t think about her Scoliosis much anymore.  It seemed like our entire lives for so long, but now it’s just background noise.  Maybe we are more used to it, or maybe it just got easier, but it only creeps up every once in a while.  It did for me during move in – “is that mattress going to be comfortable for you – I don’t want your back to get sore”.  Also, we have the additional challenge of locating a massage therapist in her area that accepts our insurance – because we need to make sure she keeps taking care of herself.  She’s eating relatively healthy and still making time to workout, so that’s good – she needs to maintain her good habits away from home.  But, the reality is that my job, while not entirely done, has significantly decreased and now it’s up to her.  I just grab onto those rare video chats and our texts and hold on and appreciate that we can keep in touch so easily.  I remember that I’m always there when she reaches out and needs me.  And, I remember that my life is much more than my kids – that they seem like everything, but that they can’t be – because when they are gone, something needs to be left.  So, here is my advice:  1.  Don’t let Scoliosis dominate their youth – don’t wish the time away to “when you don’t have to brace anymore”, etc…the time will zoom by.  So, find ways to enjoy the time you have, regardless of the challenges swirling around you.  2.  Keep developing you as a person (apart from being a parent) and your relationship with your partner – because, when the nest empties, there needs to be something left.  3.  Nurture confidence, competence, and independence in your child at an early age.  It will make the transition to “adulthood” so much easier for both them and you.  Don’t let their scoliosis condition become the excuse – they will feel so much pride and so much confidence when they overcome the extra challenges they need to endure.  Life is full of roadblocks – they have to learn how to navigate them.  My heart is with all of you Moms and Dads out there sending off your kids to college – it’s one big tornado of emotions! And, we have no choice but to hold on and ride it out!

Off to college blog

A new Scoliosis bracing solution – much closer to home.

Most people who read my blog know that I’m not a fan of the Boston brace.  However, two years ago, when my son had to return to bracing after a several year hiatus, his curves were still very mild (25 degree-ish).  In order to save a lot of time and money going to the National Scoliosis Center (which was, and still is, our gold standard of bracing), I decided we’d try the in-house orthotists at the University of Michigan.  I was hoping for a brace that did a better job of tackling the 3-D issues of Scoliosis than the typical Boston brace, and the orthotist I worked with said it would.  However, to my disappointment, it really just came back as a typical Boston brace – a tight girdle that did very little for three dimensional rotation.  My son found it to be very uncomfortable, and we weren’t getting much correction it in, but we had him wear it for a year since we had purchased it.

After the year of Boston bracing, I knew that, if he had to keep bracing, I wanted to find a place that would do a Riggo-Cheneau style brace.  Fortunately, our Doctor told us about Lance Weersma, at the Mary Free Bed center in Grand Rapids, Michigan.  So, instead of driving 16 hours to the National Scoliosis Center, we drove three to the west side of Michigan to meet with Lance.  We were very happy we did so.

First of all, the Mary Free Bed facility is wonderful.  You don’t even have to worry about parking – they will valet your car for free!  So, it’s very easy to get in and out.  The staff is all incredibly friendly as well.  Secondly, Lance has a wonderful rapport with parents and kids alike.  He got my grumpy teenage boy to crack a smile more than once, AND, most importantly, got him involved in the process of being measured for a new brace.  Our first visit consisted of Lance and his assistant taking detailed measurements.  Lance uses the Gomez Orthotic System, also referred to as the GOS brace.  It’s a variant on the Riggo-Cheneau, but it is similar enough that we ended up with a very effective, and relatively comfortable, brace.

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On our second visit, Vaughn got his brace (it took about a month).  Lance made some adjustments to it to make it fit perfectly.  Already my son noticed a BIG difference in the comfort of the GOS brace vs. the Boston he had the year before.  The straps on the GOS open in the front, while the boston opens in the back.  I find front opening to be much more user friendly.  Also, the plastic that was used for the GOS is made from a Polyethylene plastic, which is more pliable than the traditionally used polypropylene.  Therefore, most of the brace is a softer plastic, but then the areas that need to be pushing on the spine are strategically hardened and reinforced.  The GOS also has several holes built in, as well as looser recesses, which allow the spine to shift as it is being pushed over.  These relief spots also take away the “girdle” feeling of the brace.  It’s still tight where it needs to be, but they minimize those areas as much as possible.  All in all, my son found it MUCH more comfortable and, therefore, it was MUCH easier to get him to wear it without complaint.

After my son received his GOS, we went to see our regular Doctor at U of M, who took an in-brace x-ray.  We were very happy that his upper curve was corrected quite a bit, but his lower curve didn’t get as much correction as our Doctor wanted to see.  So, we met Lance once more and he made some tweaks that improved the effectiveness even more.  He was definitely willing to work with us until the brace was just right.  He even found a time we could meet at a clinic that was closer to our home, to make those adjustments.  Also, as problems arise (like when my son had a spot with irritation), Lance is always available via email.  This type of personal touch and availability is rare in the medical field, and it’s so wonderful when you find someone who goes that extra mile to ensure the best possible care.

All in all, I am very happy that we found Lance at the Mary Free Bed clinic – we got a great brace, we got to work with a very caring, personable, and talented orthotist, and we were able to have the brace billed through our insurance (a very big plus!)  If you are in Michigan, or surrounding area, I would highly recommend you make the trip over to Grand Rapids to see Lance.

Scoli-Graduation

I am now back after a writing hiatus that was supposed to be brief, but ended up lasting two months – we have been busy with a flurry of activity, including my daughter’s high school graduation, me directing a community theatre production, a trip out of town, dealing with my son’s new bracing issues AND…. DRUM ROLL PLEASE… my daughter’s graduation from her Scoliosis treatment!

A few weeks ago, we visited her orthopedic surgeon for the last time.  It’s been 5 years since surgery and all is looking just GREAT.  We’ve been working with Dr. Li a (and her predecessor Dr. Vanderhave) at University of Michigan Mott Children’s Hospital since my daughter was 6…so…11 years!  6 of those, she was bracing.  The Doc informed me that most families don’t even follow up that much after surgery, but my daughter STILL has a 40 degree curve, and a lower lumbar curve that is not fused.  So…I just did the follow ups because I wanted to make sure I crossed every T and dotted every i.  But, now she’s done.  This photo says it all….plus, she got one last rifle through the sticker bin. 🙂

Scoi grad