Monday, May 23, 2016

From a Child's View

"Is there any part of your body that hurts that would keep you from playing tag?" my niece asked, peering up at me with her big brown eyes full of hope that this time I could play with her and her sister. "I can play" I answered as a smile spread across her face.

This time I felt well enough to chase my nieces through the outdoors. I knew I needed to accept this play invitation as I may not feel well enough to join in their fun and games later. More often than I prefer I've had to tell the children in my life that I was too sick feeling to actively play with them. Instead, I'd watch from the sidelines secretly yearning to join them just as much as they wanted me to play with them. My heart breaks each time I have to decline their invitations to play. And although I see the disappointment in their faces, they've learned to understand that sometimes I just can't play.

My nieces actually know very little about the Familial Adenomatous Polyposis (FAP) disease that my mother and I share. We are the last survivors in our particular branch of the family line to have FAP. For this reason, it isn't overly necessary for the children of our branch to know a lot about FAP as their parents, siblings, and themselves are negative for the disease. They simply know that my mother and I are frequently ill or in pain and we're limited in our activity because of this. Occasionally they will ask questions, which we are more than happy to answer but most of the time they accept without question when we are ill.

I've been amazed watching my nieces modify their play to adapt to how I'm feeling so that I can typically still join them in one way or another. They have never acted resentful when I've been unable to play with them and instead show concern and care. They don't question or comment when I require frequent restroom breaks or rest periods. This has become normal to them as they have witnessed my health status all their lives.

I've found that allowing a child to witness how chronic illness affects a person greatly shapes how the child will react to chronic illness and its effects. Without exposure and knowledge, an individual is unable to grasp how chronic illness affects one's life. Developing empathy doesn't require medical knowledge of an illness but rather a practical understanding of the effects on everyday life. Throughout my nieces lives they've been aware when I'm ill.

We can share information about our illnesses without delving into too deep of information or scaring a child about our own well-being and safety. It's more important that the child know us and our love than the specifics of a disease, particularly when the child doesn't have the disease. We don't necessarily need to explain our disease to the children in our lives as long as we are real, loving, and ourselves with them. They will come to know us as we are and discover what is truly the most important - our relationship not our health.  





2 comments:

  1. I love this so much Jenny! The fact that your nieces modify their play to include you shows that they'll grow up to be very empathetic to those with chronic illness. I wish more adults would follow their lead! Great post!

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    1. Thank you so much! I completely agree, to view life through a child's eyes and share love as much as a child does is a great lesson for all of us.

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