Friday, June 1, 2012

Reflections on a Journey with PIS: One Superhero's Story.

On March 8, 2010, I gave birth to twins. Both miracles. Both beautiful gifts of Love and Light that changed my world forever. I didn't know then, that I had brought into the world a Superhero who would alter the lives of so many with his gifts and his example.


It is hard to believe that over two years ago our lives changed and the course of my son's destiny shifted toward where we are today. On September 23, 2009 our 18 month old beautiful boy was diagnosed with Infantile Scoliosis. Little did we know about those words. Foreign was no longer a word we associated with a language. It was a new normal and a curve in our son's spine that would come to take over his being and his body and our lives.

After a lot of research (too much actually), and a support group that guided us to think about casting as a treatment option, one chilly November morning we found ourselves in a waiting room at Shriners Hospital for Children in Chicago listening to a doctor we had just met, share with us that Jackson was a great candidate for Mehta casting and could we cast tomorrow.

In the orchestrated path of God's plan, that was certainly one of the major jolts we would become all-too familiar with along the way. With little familiarity, if any, about cast life and minimal time to emotionally, mentally, spiritually and physically prepare for the next day, we moved forward.

I won't even begin to try to describe what that night was like. Only a parent of a child about to enter into cast-life can truly understand what the first of many Cast-Eve's does to your you can't touch their skin so beautifully smoothe upon their back enough if one more touch will etch how it feels into your fingers so you won't forget it for the next 12 weeks. How watching him frolic so naively and innocently in the tub with his twin brother is painful. How hugging him so that you can again, etch that hug into your heart begins to wrip your heart into pieces, one hug at a time. Crying yourself to sleep with an undisclosed horror and unknown as you whisper good-night to your old "normal".

On November 5, 2009, Jackson received his first cast; "Old Blue" as we call it with fondness. At and increasing 35 degrees and a RVAD measurement of aproximately 30, he was on his way toward healing in what would come to be a 9 cast- 9 surgery- 2 doctor- 20+ x-ray- and countless parental heartache journey of a superhero.

Our Superhero defied Gravity. He wore his cape proudly, bravely, mightily and effortlessly as he blazed into each cast day over the next two years with courage and conviction. He taught our family...and the many friends and family surrounding him along his journey, that even a little person such as himself can prove to have more tenacity, resilience, courage, spirit, humor, ease, light and love to offer in the face of adversity and struggle. I am in awe and indebted to my son for these life lessons.

His new "normal" became his friend. He never ONCE complained nor confined himself to "I can't". He never ONCE cried when he should have...I would have...I did. He never ONCE gave in to the obstacles presented to him, but instead, rose above them while often his cheering section couldn't do the same. He is my hero.

It is so joyful and humbling to be able to share the place where our son is today. In September of 2011, almost two years to the date of his diagnosis, he received his brace which he is still sports 23 hours a day. His correction in cast miraculously and maticulously straightened him to under 10 degrees which in Scoliosis terms, is "straight". If you look at his x-ray while in brace, he is infact, STRAIGHT. Another foreign word... we now say with delight and gratitude and relief.

The journey now...for Jackson... and our family consists of holding onto HOPE. Hope that the brace will hold him during his growing years. For how long? For as long as his spine needs the support. We do not look beyond today. HOPE that the many beautiful children we have come to know and love and pray for fighting the same fight will also have their moment. Their correction. Their answered prayers. HOPE that with a campaign of awareness about Infantile Scoliosis and Mehta Casting as an INITIAL treatment option, fewer children will endure unnecessary invasive procedures to hold or treat what could be done without the mention of rods and surgery. HOPE that more parents...more pediatricians...more specialists in the field of orthopeadics and spine care, will not accept "WATCH AND WAIT" or "WAIT AND SEE" as an option, but continue to learn about and act on casting as a successful and viable method of treating Infantile Scoliosis. My son is living proof. He is an example, a poster-child and a beacon of light for those behind him and beside him that HOPE prevails.

At Jackson's "Cast Off Blast Off" party we honored him with last fall, we shared a slideshow with family and friends to help them understand his story, his journey and what the last 2 1/2 years had meant to our family. It was meant to serve as a little window into Jackson's fight. We gladly share it with you here. Thank you for watching.