Sandra Spinelli | Right Now 

Caregiver and mother, Sandra Spinelli, shares her price about her son who lives with a serious illness.

Caregiver and mother, Sandra Spinelli, shares her price about her son who lives with a serious illness.

Sandra Spinelli 

Right Now 

Poetry 

If you are a parent of a child diagnosed with a special need, you may have found yourself wondering, “How will I raise this child to become as independent as possible and where will I find answers?” When my son Colden was born, I asked these questions and continue to search for a resolution. Today, I watch my son inspire others with his strength. Colden, otherwise known as Super C, is a 13-year-old boy with complicated special needs. He is developmentally delayed with Epilepsy, Cerebral Palsy, Digestive Birth Defects, Sensory Processing Disorder and Autism, resulting in his non-verbal communication. I often feel isolated from the “normal” world due to his handicap and the responsibility of being his sole caregiver. I write about the hard truth and rawness of parenting a child with disabilities. Writing provides me with an emotional release. It allows me to grieve, heal, and feel peace. I share my writings in hope of comforting those who face a similar experience as my own.

“Right Now” 

Tuesday, March 22, 2011 

Right now, it’s after nine, I prefer you to be asleep by eight. I’m listening to you settling yourself in bed. I hear sounds that can be described as a puppy barking, a dolphin squealing, and a new noise that started today, a cluck, cluck, and cluck. The sound has not stopped; apparently, you have little control over the sound made with the click of your tongue on the roof of your mouth. The cluck is followed by a right turning of your head, a slight upward flutter of the eyes and a return to the present. The cycle of cluck, head, flutter came every other minute today. It is odd, unusual behavior for others; however, such abnormalities have become perfectly normal in our lives. 

It’s difficult to describe the feeling that every so often engulfs me. I yearn to be closer to you, to hug you, to squeeze and pull you tightly and make our bodies join as one. I grow weary of the silence in our lives. We go through days alone; none the less, we are two individuals constantly together. I see my boy trapped in a dysfunctional body; the image of a baby’s mind ensnared in a young boy’s essence. 

I love when your brain allows you to be aware and we share an appreciation for one another by forming a connection. Your blue eyes gaze deeply at me. You’re listening to my voice, you’re cognizant of my words, study my face and reach for my hair. We are communicating. 

I no longer feel the need to be bound by the limitations of your body. 

I enjoy the present by embracing the now.

Beyond My Battle