Our village

My days are scripted due to therapies and therapies. I live and die by my calendar which is synced to my phone and is in essence what grounds me in the task which demands my focus. Without my spreadsheet, my phone and calendar I'm nothing. That is pretty common when you are attempting to maintain a semblance of normalcy in an atypical world.

There are times when Charlie simply won't do. Since he can't talk it leaves teachers, his one-on-one aide and all those in his therapeutic village at a loss. We all know he is capable, it is about finding ways to improve communication between his enormous team of therapists, doctors and specialist to develop plans that help maximize his potential. Charlie is a superhero when it comes to overcoming obstacles and my phone is our super secrete weapon. I use it to take videos, snap pictures and capture evidence of his ability.

I guess I should backtrack. Since early on in Charlie's life, he has been surrounded by doctors. When in the P.I.C.U. he had at least 4 teams of doctors that visited him daily. So we've become accustomed to having what we call a "village". Our village is smaller than what it used to be as we are no longer under monthly nutrition consultations and we no longer consult a gastroenterologist. These days our village consists primarily of therapists. Lots and lots of therapists. Our schedule between occupational, physical, feeding and speech therapy ebbs and flows.

So I drive my car back and forth across the same 8 miles down NW 62nd. We drive, tunes jamming phone safely tucked away until we get to session. With an arsenal of videos we enter a room or a play gym to work on skills others find easy like swinging.

Swinging has changed our life. See Charlie is a sensory seeking child. As a result of his significant developmental delays, his neuromuscular systems need help getting activated. In essence, he is under activated. Swinging helps coordinate the two hemispheres of his brain. Performing tasks like pushing a button or putting a coin in a slot, are simple for some kids. They are very difficult for Charlie. See before the swing, Charlie would bang his head. In part a negative consequence of a cranial band, in part to communicate and get sensory input. With that said it is horribly unsafe. The swing helps Charlie to get the sensory input his body is so desperately seeking in a safe way.

These days we swing and jump a lot. As we swing, I cannot help but feeling as though we are swinging through time. When I think about it, we are all just mothers of necessity. We all walk the same path. While at times the path can seem monotonous, repetitive and grinding it truly traverses both space and time. All mothers want what is best for their children. From desperation and despair hope and innovation can be born. In particular, when as women, we realize that we do not walk the path alone.

The switchback trail I walk is one which my mother and grandmother walked before me. Along the mountainous climb there are treacherous points. It is easy to lose focus and when you fear you might, it is okay to stop and rest. It is only when stopping to rest that you can see that the path is littered with villages along the way and that is a good thing. It takes a village to raise a sensory seeking, global developmentally delayed, hypotonic, non-ambulatory,  non-verbal child when you are the mother of necessity.