That drive to California to start treatment was full of hope AND fear. Hope that it would work and fear of the pain and sacrifice this process would entail. Not to mention the fear that it wouldn’t work. Jenna was 100% in because she knew that spinal fusion would be life altering. She had watched me have surgeries for much less invasive things and knew that wasn’t an easy out.
Matt flew home after the first day to take care of our son and I stayed with Jenna those 3 weeks of getting started. I often felt like I wasn’t old enough, mature enough or brave enough to be the parent in that situation. It was exhausting emotionally and physically. I watched my daughter’s body and mind be pushed in ways I never imagined. There were so many tears in those initial weeks but we also had confidence we were doing the right thing after meeting the doctors, other parents and the girls who had seen amazing results. We were in the right place at the right time.
Jenna grew about 4 inches in that first year of treatment. If we had “watched and waited” like the dr. suggested for anything under 40 degrees, we surely would have been destined for a spinal fusion surgery. Instead, we were in a brace that was corrective, using therapies specifically created for her curves and as a result saw a reduction of 20 degrees in that first year.
We are now at a 60% reduction in her biggest curve and she’ll never have to undergo that surgery. She’ll not have debilitating pain like she would have if we hadn’t found it when we did. All of her hard work and the sacrifices we have made are worth it.
I know that this route isn’t for every child or family. I also know that it’s not an option for every family even if they wanted to take it. The cost and the time required for travel and treatment is high. I wish it weren’t that way. I wish our healthcare system cared more about prevention and supported non-traditional methods. They don’t. Our systems are broken and failing our children and families. Our eyes have been opened to that more through this process than ever before.
We are completely privileged because of our flexible businesses that we run and also the ability to pay for the ongoing expense because of those businesses. We don’t take that for granted.
We never imagined that we would be called to be advocates for scoliosis care. Sometimes God gives us the passions we have out of the pain we endure. This is one of those for our family.
Meeting so many families who are walking this same journey has been one of the biggest blessings along the way. I love that we get to encourage new families who are just starting this journey and advocate for the alternative way.
One day we hope to write a book about our journey. Until then we’ll share bits and pieces of the path.
Parents, you are your children’s biggest advocates. Don’t ever be afraid to speak up or out. Don’t take a condescending dr.’s opinion as the holy grail. Follow your gut and follow God’s leading. It won’t always be easy, but it will always be worth it.