Fine motor fingers and gross motor toes

He is the kind of disabled that makes people feel less uncomfortable. The kind that unless you know what to look for, you might not be able to tell. Once they have enough courage and they have seen that smile they always ask us, "What does he have?" I really don't mind because it provides the opportunity to educate those that live in blissful ignorance about disabilities. With that said, there is never a clear answer. So, I explain Charlie's complex medical history. He had septicemia at six days old with suspected bacterial meningitis. He spent 30 days in the hospital with a PIC line in his little arm. No, he wasn't sick in the hospital and there weren't any birthing complications. Yes, it was discovered at the doctor's office. No, there wasn't a fever, he was hypothermic at 93 degrees. As soon as they don't get the answers they expect they have more questions. I understand, I feel the similarly. Doctors are supposed to provide answers and give direction, a course of action. That simply isn't "the path" we walk. 

A lack of definite answers always results in more questions. Questions to which I most certainly don't always have answers. Boy have I struggled with that bit about the answers. So I proceed, I explain the complicated process of genetic testing and gene mapping. I explain what "it" is called, a variant of uncertain significance (VUS). So, to answer them bluntly, "I don't know." Was he born this way or was this because of his illness at six days old? "I just don't know." 

Most people don't realize how easily growth and development comes for children. Most children eat, sleep, poop and grow on a repeat cycle. They never struggle with simple tasks like drinking milk. With Charlie it has always been a struggle full of wandering, trailblazing and switchback trails. We know no other life than the therapy based one we live. Our journey is a quest for bent elbows, quadrupled knees, fine motor fingers and gross motor toes. Most people don't realize how difficult these seemly simple skills truly are. Yet he just could't do any of them no matter how hard we tried. 

With Sophia it was so much simpler. While she was incredibly sick with upper respiratory issues she was never hospitalized. She was my teacher, giving me the gift of motherhood and teaching me patience along the way. Her infancy was filled with the wonderful soft lines of dimpled bent elbows and three quarter incline planes as she did her tummy time. She rolled over, she sat up, she sang songs and took steps. The summer before her first birthday I snapped this photo of her in the swing at my parent's home. The way she twists her torso, flinging her arm over the back of the swing, resting her head on her hand. It was all so simple and effortless for her. Those are lines that Charlie still has not mastered. Sophia was blessed with fine motor fingers and gross motor toes and we lived in blissful ignorance as most families do. 

It is only now in hindsight that I can truly see the differences between the two, Charlie's head misshaped due to poor postural strength and positioning. The constant struggle with motility as a result of hypotonia combined with an iron deficiency. During "ground zero" and "the aftershocks" that ensued I was blinded by the quest for answers. I was driven by the need to find the cure "bobbing and weaving" my way through the boxing match of life. 

Today, I am driven by a different sense of purpose as I sit in the reality that there is no cure for Charlie. He isn't sick or broken, needing to be fixed. He is beautifully disabled. He is perfect as he is. He doesn't know how to hate. He doesn't understand cruelty, or know how be mean. Charlie is pure innocence. His smile defines him shining through his unintelligible words, unexpected noises and flapping arms. 

Don't get me wrong, there are lots of tough days. I am constantly tired and drained from the fight with insurance to get the medically necessary therapies he needs. We wake early, he eats constantly, and for the most part, I am covered in his urine as we attempt to master potty training. Yet, it is the feel of his little arms wrapped around my neck coupled with the warmth of his breath on my neck as he speaks a language only I can translate. Those small quiet moments galvanize my will, giving me the strength necessary for another day. 

Championing Charlie will never be a paid position with vacation and sick days. It is a job that demands the best out of every skill set I have. On a daily basis I exercise more leadership than I ever did as a teacher or future administrator. I innovate, create and differentiate the world for my disabled child weaving together a web of service providers, therapist and medical specialists that create the success we have achieved up until this day.  Charlie doesn't achieve milestones in the same way as big sister. Yet everyday our family climbs mountains in search of those fine motor fingers and gross motor toes, big sister and dad cheering us on. In our family, we know how special every accomplishment is. Charlie is disabled, life is challenging but we wouldn't have it any other way.