What I Want My Daughter to Know About Her Brother’s Infantile Scoliosis
Right now, at 10 months old, you’re just a little ladybug, and your face lights up when you see your brother’s smile. He’s your biggest fan, favorite playmate, stealthy conspirator and lifelong protector.
He adores you, loves to make you laugh, enjoys antagonizing you and is so proud to be your big brother.
When we decided to add your sparkle to our family, one of your brother’s doctors was wary and advised against it without further genetic testing. Genetic test results don’t define how we care for your brother or determine the love we have for both of you. At that time, you were actually already growing under my heart, and I knew whether you had a straight spine or were an infantile scoliosis warrior like your brother, you would be loved.
Your Superhero has undergone numerous surgical procedures for spinal cord release and serial scoliosis casting. During his little three-year adventure, he has experienced more anesthesia than your daddy and I combined. He now proudly adorns a thoracolumbar sacral orthosis or TLSO brace, because every good superhero needs a shield of protection.
When you were a few months old, your brother inquisitively looked at your chest as I was dressing you and asked when you would get your “Mehta” torso cast. At that moment, I admit, I didn’t know exactly what to tell him. From that moment on, I’ve been thinking about how to share your brother’s story with you and teach you about loving others who may appear to be different on the outside.
The truth is, Ladybug, there is no such thing as “normal.” We may not all have certain abilities or characteristics deemed to be the accepted and beautiful norm. We also may not all have curved spines, physical limitations or visible distinctions, but we all have hearts that can be hurt, lives that have encountered challenges, relationships that hold meaning and dreams that have experienced triumphs.
Your brother has progressive infantile scoliosis and will likely wear some type of brace or cast until he is old enough to undergo surgery in his teens. As you grow alongside one another, our Superhero and Ladybug, people may see and treat your brother differently with their judging eyes and words. But please remember to look at others with your hearts and not with a worldly expectation of “normal.”
You will have a unique view of the world, because not only will you see situations through your own eyes, but I believe you’ll also experience them through the eyes of your brother. He’ll have many adventures that set him apart from others, and you, as his sidekick, will find yourself in more hospitals and waiting rooms of doctors’ offices than many other children will.
While many of your days will be spent waiting with your brother in these places, don’t grow bored and frustrated when this happens. I believe your brother’s hospital of care is one of the most magical places you will experience with some of the most special people you will ever meet. When you’re there, don’t stare with sharpness at those you come in contact with. Smile with care and respect, and act with love and intention. Be the friend you would want to have, and greet everyone you meet with a smile. When you see others who may look physically different, instead of standing in front of them, walk beside them.
Finally, Ladybug, be quick to listen and slow to speak. Everyone has a story to tell. The adventures you and your brother will experience will be different than others, but none is more important. Listen, learn, show empathy and learn from their experiences.
Keep smiling at your brother in his shield of protection, because one day, he’ll show you how to have courage, too.
Our son, Hunter, was diagnosed with progressive infantile scoliosis at 13 months old. Scoliosis is often acknowledged as a condition that is diagnosed and experienced in the teen years. However, infantile scoliosis is a different scenario and must be diagnosed and treated quickly with the rapidly growing life of the young child. To learn more, visit the Infantile Scoliosis Outreach Program.
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