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.

Monday, February 13, 2012

I(We) got your back!

" I got your back" or " We got your back" is a term we have heard over the years. It means I will protect you from harm. I will back you up if someone/something bothers you, or I will take care of you. For children with Infantile Scoliosis, this term goes way deeper. On a positive note, it means that we are here for you. We( LCC) are a group of people who are here for one another. We will not let anyone or anything(Scoliosis) cause you harm or distress. We will be there for you when you laugh, cry or want to scream! We will be there for cast #1 to cast #23. We got your back! This also brings our miracle.. the CAST into the picture. The cast literally has our childrens' backs. It is wrapped around them so tight and there to hug our children when we can't for 8-12 weeks at a time. The cast is protecting our children from harm(Scoliosis). It is our piece of hope that our children will have straight spines someday. On a negative note, scoliosis also HAS our childrens' back. It is causing them harm, discomfort, and twisting our babies' spines. It is saying to our children," I got your back!" So far in 2012,  2 of our casting children have been given the news that they are straight and will be cast free: Massimo and Cadence. To scoliosis we say, YOU DO NOT HAVE THEIR BACKS ANYMORE!" To our casting friends we say, "We will always have your back!" We will forever protect you from harm and distress. To the cast we say, " Please have our children' back!" because if it will make them straight we will be blessed!

Thursday, January 19, 2012

We found Love....

This past Monday not only marked the holiday of MLK, but my first trip to the outpatient lobby of Shriners Hospital for Children in Chicago. First trip you ask? Let me de-confuse you. I did not accompany my superhero for his cast. I went to support my other scoliosis sisters, my Lucky Cast Club. Of the 20+ beautiful children our community now wraps itself around, 3 of my near and dear were getting casted and the pull couldn'tve been stronger. I needed to be there. I needed to stand with them, if only in spirit, as they endured the long process and the emotional rollercoaster we all know and (don't)love as cast day.

Iron Will, Sweet Kiya and beloved "G" were getting casts 11, 6 and 8 respectively. Not only do I have a kinship of sorts with these beautiful babies (they're not babies, but like any mother, I endearingly do and will always refer to them as such), I share a kindred connection to their mothers. My beloved friends are the rocks and sounding boards of my scoliosis world and I theirs. That's how we are.

I haven't known them long, but any survivor of a tragedy or unexpected shift in your paradigm and perfect world, can tell you that those with whom you endure the fire, the fury and the battle with, are evermore your family. There is a split-second and constant connection that ties you and binds you in deeper and more profound ways than frienships shared over years or blood ties. It is the shadows of darkness and dread you experience together with an understanding only those who too, experienced that darkness can relate to and truly..."get". It is the scars of the fight, the pain of the loss, and the witness to the injustice that pulls you to one another closer each time.

But more beautiful and powerful I have found in these women, their children, their husbands, and their families are the gifts and the blessings that come out of the darkness. Integrity. Advocacy. Empathy. Tenacity. Faith. Encouragement. Laughter. Loyalty. ...and then there is love.

I love them because we have something special. We've seen one another in our ugly cries and in our joyous ones. We've lifted one another out of deep and deafening tidepools that keep joy out and anxiety in. We've been one another's life lines and beacons. We've held out our hands so that when down and weak and scared and timid in the face of fear, someone is there to pull us up into a stance whispering in our ear and in our heart, "you can do this." I love them because like me, they are mommies who have had to stand back and helplessly and often hopelessly, love a child who is fighting a constant battle in their body. They know what I know: agony, sadness, anger, depression, dread, fear, disgust, guilt, fatigue...the not so pleasant faces of being a parent battling Infantile Scoliosis.

I love them because their presence is a security that wraps me with love and understanding in the scoliosis moments. And trust me, those moments (even when your child is in a brace) are abundant and cruel. I love them because I trust them. This said trust runs deep with vulnerabilities of a parent blindly manuevering through the world of scoliosis; making mistakes along the way in the judgement of caring for my son and his cast..and his brace...and his self-esteem...and his well-being.

Their ability and capacity to allow me to BE, is reassuring that I am in the company of companions. Whether it be in sharing a movie, a glass of wine, laughter, dancing or more profoundly still, my son's story and our similar paths, it is comfort. It is friendship. It is trust. It is unexpected delight in sharing more; life stories, love stories and perhaps even a naughty cigarette (or two) while hidden in the deep woods of Indiana ;)

But what I love most about these women is their beautiful and palpable spirits of hope. Either collectively or in the quiet of a personal text or phonecall, they have the capacity to lift me out and push me back...back into a better mood, a brighter place or a gentle reality check. They pour life back into me. With their smiles, their laughter, their hands to hold and hearts to cling to, they sense the alienating feeling of coming close to losing hope creep upon me and instinctively, they know exactly when to shine it back yellow diamonds in the light. How blessed am I?

My list of beautiful friendships from my Lucky Cast Club community does not stop at these three, but it was in the giddiness of the joy, the calm in the news and the familiar of the hospital and the routine of that day, that I was awakened to the gift of what we have. Then yesterday, to magnify it even more, Catie texted me a song that brought it all home.

I had heard the song before and in fact, it sits in my playlist and is a frequent "kitchen dance tune" that my children and I will jam to. But in hearing it at that moment, it took on a deeper meaning. It translated what I've known for some time but perhaps have not appreciated to the degree that I should. That these four women (Kelli, you will always be included!) are special. They are unexpected presence I received in a lifetime of many gifts. And I know that those rare blessings that come along in a lifetime should not be minimized or taken for granted.

You gals are my rocks. You are my "yellow diamonds in the light...I just can't deny." The only difference is, I will not let go. I love you.