Scoli Mom Guilt

Most Moms have experienced the big, bad, dark torment of Mom guilt at one point or another in her life as a Mom.  It’s practically unavoidable. But, in the world of Scoliosis, when there are so many choices for our child’s path, we set ourselves up for a special brand-name Scoli guilt – and, possibly it’s successor – regret. I am kind of in a puddle of the mucky mom guilt right now – and I’m hoping it doesn’t turn into regret later, but it will be some time before I can tell.

Mom guilt
Scoli Mom Guilt can make the most confident of us feel blue.

I didn’t talk much about our latest bracing adventure for my son because it’s been much too crazy and emotional of a Spring for me (for many reasons).  However, it’s past time for a recap.  I’ll just start by saying that my son grew nearly 7 inches last year! No joke. His previous brace was way too small, but we all know that insurance only covers one per year, so we waited.  Thankfully, his upper curve stayed in the high teens and his lower curve in the mid 20s, so I felt pretty good about how he weathered that growth spurt. However, we anticipate another big year of growth and the Doc wants him to keep bracing at night.  Well, the dilemma we faced was this: due to insurance changes, we were looking at close to $5,000 out-of-pocket, plus travel expenses, to go to Luke at National Scoliosis Center. Now, let me just say that he is worth every penny and more, and I still highly recommend that families go there if they can.  But, we were still faced with a dilemma.  With the amount of growing years left, we could be faced with out-of-pocket expenses equaling a year or more of college. How do we choose? With our son’s curves being so low, could we forego the “Corvette” model brace for one that might still do the job and not cost us out of pocket?  

I did some pretty extensive research and decided we would stick close to home this time and I thought that where we were thinking of going would still treat the Scoliosis condition in the 3D rotation.  I really wanted something better than the traditional Boston brace.  However, what we ended up with is essentially a Boston brace, with some additional pads put in to help rotation.  Not really what I expected and definitely not nearly as comfortable as what we were used to from Luke’s braces.  And, no doubt it is not nearly as effective.  *sigh*  My son is not very happy, but he’s tolerating it and he knows that we made this choice purely to manage both his curve and our finances as much as possible. We took a gamble, and we won’t know if it will pay off until our year is over.   If his curve increases, we will definitely return to National Scoliosis Center – the quality just cannot be beat. But, it’s so hard not knowing. We want to give our kids the best of EVERYTHING, but sometimes we just can’t. Or, we can in the moment, but it would be at the risk of something else in the future.  It bothers me how it seems that the best treatments for Scoliosis are also the most expensive because insurance companies don’t recognize the benefit of the newer and better treatments. And, the immensely talented Orthotists like Luke need to get compensated for their time and talents.

For me, it came down to this: when moving from point A to point B, both a corvette and a jalopy can get you there.  The corvette may be more reliable and the ride smoother, but you’d have nothing to spend on a house when you got to point B.  The Jalopy may emphasize every bump along the way and make you nervous that you won’t arrive safely, but, chances are, you will get to Point B and still have money left for a mortgage.  OK, my son’s current brace is a little bit better than a Jalopy, but you get my point. Sometimes we Moms have to compromise – and, it kills us to do so. And, even if we know we made the best decision for right here and right now, we still worry – have we done enough?  I guess I will see at his 6-month checkup. Until then, I can’t look back. I will just have to await the learning experience that is to come and trust in my prayers and my instincts as a Mom.

Jalopy
It may not be pretty, but can it get us there? We shall see.

WIN a Scoliosis Activity Suit through the Crooked Life Foundation!

crooked life 2

In the very small Scoliosis community, it is always nice to see people helping each other out. This is where Marce Kuhns comes in. She was diagnosed with Scoliosis at 12 years old, and started out wearing a hard brace. It was too painful for her, but the only remaining option was to wait and watch the curve progress. After 26 years of back pain and growing postural deformities, she found a life-changing rehab-based Scoliosis treatment . With this newfound hope, she began to share her story. Her blog, The Crooked Life, is a way for her to share her story and to encourage others who struggle with Scoliosis.

 

 

Marce didn’t just stop there, though. She continued to help others by starting The Crooked Life Foundation with her husband, Rob Kuhns. The Crooked Life Foundation has an initiative called “Project SAS 10”. This project’s goal is to provide families who need it with Scoliosis Activity Suits, which are lightweight, neoprene supportive suits that work with a patient’s natural body movements to stabilize the body and reduce pain from Scoliosis.  Marce estimated that it would take a few years to be able to hand out 10 suits, so the project is aptly named “Project SAS 10”. So far, as of May 2018, they have given away 8 suits!!

Project SAS 10 is in action right now! The Crooked Life Foundation is doing a Scoliosis Activity Suit giveaway for suit #9 from now until May 18th. If you win, you get the suit, a consultation, fitting, and x-ray, which is a $1500 value. The winner will be announced May 20th. To find out more about this giveaway, go to The Crooked Life Foundation’s Facebook page or the Project SAS 10 page.  Make sure you check out everything else that Marce does, and show your support!

 

Crooked life 1

Written by: Cynthia Beauvais

Photos used with permission