Sometimes I Just Don’t Know….


Often times when things occur with Olivia, it is a difficult challenge to determine what exactly is the cause or symptom. Why? Because Olivia is nonverbal and due to lack of muscle control, is unable to use sign language or point. We have been working diligently the past year to teach her to communicate effectively, using an Eye Gaze Board. The board isn’t anything too technical.  It is made from plexiglass and has velcro strips adhered to the surface, so picture cards can be easily attached. The board is a great tool for giving Olivia opportunity to participate in decision making, such as choosing an activity like painting or reading, but I find it difficult to use when she is in pain or some other form of discomfort. Usually because of her demeanor in these circumstances, she can’t concentrate on anything but the pain at hand. We are then left with the infamous guessing game….

There is no greater form of stress than to witness your child suffering from pain, and knowing they have absolutely no way of telling you where it hurts or how to make it stop. This past week has been an emotional rollercoaster,  watching Olivia struggle with eating and the struggle to keep it down to watching her try to deal with random spasms occurring, in what I think, was her hips or maybe her thighs. Many nights were spent either cleaning up vomit and changing bed sheets or performing stretches and warming heating pads to bring some relief to her.

Five nights have past and last night was the first time she slept through, peacefully. She awoke this morning bright eyed and ready to take on the world. These are the moments that set me spiraling because, as thrilled as I am that she is showing signs of improvement, I am still puzzled as to what was the cause. Virus? Or a product of Cerebral Palsy?

Cerebral Palsy…..

When Olivia is at her healthiest, I often forget that CP is a part of her. I can’t help it. I get caught up in her laughter and contagious smile or how she can be oh so impish when playing with her brother and sister. I hate how reality jolts us back into perspective; robbing us of that beautiful peace of mind.

This is the unfair reality that tugs at my heart strings.


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