The Long and Winding Road …. Eventually Ends.

This is a photo of my two little Scoliosis warriors – 11 years ago. This was already a couple of years into our journey and when our son got his first brace. He was 5 and actually EXCITED for a brace because he saw his sister wearing one for close to two years by then. Now he is 16 (and a half) and was just told he is DONE with his Scoliosis journey. Thankfully his journey ended on a positive note – no surgery required now or for the foreseeable future. Our daughter was also finally cleared of follow-up appointments just before her 18th birthday. Wow. It’s been a long haul. They will never be “done”, as they will always live with these unpredictable, curvy spines, but the growth is done, therefore the major challenges are done.

I still remember those first few years – so many decisions to make, so much conflicting information – it’s hard to know who or what to trust! But, I finally found a team that I feel I could trust then and I can trust now. This photo was taken back when Luke Stikeleather was still at Orthotic Solutions in Fairfax, VA. He made these braces for my kiddos…and they got to watch and help! This was before he started the National Scoliosis Center and made it into the amazing place it is today. I knew then that we could trust Luke and I still believe that 100%. And I’ve met many others along the way that I’m happy to have as part of our team – Dr. Li at the University of Michigan, who did my daughter’s surgery. I trusted her with the ultimate trust – to cut down the entire length of my daughter’s spine and to make things better. And, she did that. Dr. Morningstar, who was part of my trusted team before Scolismart was even in the formational stages. He was and still is one of my most trusted sources. And, then there is Lance Weersma at Mary Free Bed in Grand Rapids, Michigan, one who helped us later in the game, with my son’s final brace – who I admire so much for trying to bring the amazing Brace technology of the Rigo brace to Michigan. He was such a wonderful source of encouragement for my son.

My point is that you will find your tribe – just keep looking, talking to others, and taking other people’s recommendations. Living with this disease can take us to places we never imagined. I didn’t start this journey down scoliosis with any desire or intent to start a business to help others in their journey – but here I am, over 10 years later, doing that, too. Be open to the possibilities. The road seems very long when you have children who start so young – even when your child is diagnosed as a teen. But, I am here to tell you that eventually you will look back on the experience and, when it’s all done, you are happy (of course), yet it has become such a part of your life that you wonder on what you will focus your energy now. Believe me, there is always something! If nothing else, to mentor those starting the journey that you just walked. No matter where you are on your journey – take a couple of deep breaths and just keep placing one foot in front of the other. You’ll get there eventually.

Published by Tina

Mother, Inventor, Entrepreneur, working to help make people who need to wear orthotic and prosthetic bracing, more comfortable in their braces.

2 thoughts on “The Long and Winding Road …. Eventually Ends.

  1. Tina, Thank you for your posts. I just discovered them! I want to share some of my daughter’s journey with scoliosis, just so others can be aware of possible complications down the road. 1995- 11 yrs. old-Suzy faithfully wore her brace for a year. Curves got worse. T42*/L58*.
    1996- Surgery for double rod performed and successful, though of course some curve still there.
    2010- Small pimple at base of spine that wouldn’t clear up. Diagnosis-an infected spot [described by the doctor like a barnacle on the hardware]. It was determined that the spine was fused and could stand alone so surgery was performed and removed, piece by piece, all parts of the hardware. Same scar area was used and healed well. Suzy danced at her wedding 2 months later.
    2021- 35 years old now. One shoulder blade still protrudes a bit and one hip is slightly higher. But Life is not compromised. As her Mom, I hope that is the happy ending of the story.

    1. Mary Ann – thank-you for sharing your story. I know it’s been a tough road for you and Suzy, but it does sound like she’s doing great. A happy ending, indeed.

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