Monday, January 13, 2014

Living With Cerebral Palsy

Over the past two years I have shared quite a bit about Down Syndrome and how that affects people's lives.  I have shared the ups and downs on what it is like to have a child with Down Syndrome and how individuals with Down Syndrome can lead a very productive life.  Very soon, however, our family is going to learn what life is like with Cerebral Palsy.

From what we know about Yun, her CP (Cerebral Palsy) is not as severe as some.  It has affected predominantly her right side though she is able to walk, run, feed herself, and meet her everyday needs.  We will of course know much more once she is home and has been seen by a neurologist.  But what exactly is CP, you ask?  Here is a definition from the Mayo Clinic's website:

"Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by an insult to the immature, developing brain, most often before birth.

Signs and symptoms appear during infancy or preschool years. In general, cerebral palsy causes impaired movement associated with exaggerated reflexes, floppiness or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteadiness of walking, or some combination of these.

People with cerebral palsy may have difficulty with swallowing and commonly have eye muscle imbalance. People with cerebral palsy may have reduced range of motion at various joints of their bodies due to muscle stiffness.

The effect of cerebral palsy on functional abilities varies greatly. Some people are able to walk while others aren't able to walk. Some people show normal to near normal intellectual function, but others may have intellectual disabilities. Epilepsy, blindness or deafness also may be present.

People with cerebral palsy often have underlying developmental brain abnormalities."

I have a friend, Shelly, who has severe CP and is essentially confined to a wheelchair.  She can walk with a walker and scoot about on the floor but it is not easy and very taxing on her body.  It is difficult to understand what she says when she talks, but it is worth the patience to listen.  Her CP has not affected her intelligence and she has shared with me it is as though she is trapped inside of a broken body; she hates her CP.  Shelly's faith is unshaken, however, and she has a very close relationship with the Lord.  She knows that someday when her life here on earth has ended she will be free of her CP and she will be able to run, dance, walk, and be made new.  Sometimes she teases me that when we will be in heaven together someday she will beat me at a marathon (I know she is absolutely correct on that)!  What makes me sad, however, is that Shelly has shared how people are afraid of her because of her CP.  So often she will want to talk with someone but because she is difficult to understand her folks do not want to take the time to talk with her.  Or some folks are just flat out afraid of her.  It hurts Shelly so deeply as she just wants to be friends with everyone she meets.  Those that do not take the time to listen or get to know her are the ones who are truly missing out on someone special!

Last week one of my friends shared the following video.  It is about a man named Roger who like Shelly, has CP.  Roger shares what his life is like and how he has to overcome the daily challenges of living with CP.  But what he truly wants to share is how he has overcome the loneliness.  Roger also has an amazing faith and he worships the Lord without shame.  In fact, he says that if he doesn't worship the Lord it is as though he is unappreciative of Jesus dying on the cross for his sins.  I challenge you to take a moment to view the following video and contemplate what life is like for Roger, Shelly, Yun, and the many others who have CP.  The difference among Roger, Shelly, and Yun, however, is that Yun is not receiving ongoing medical care for her CP nor does she have a relationship with Jesus.  So how does Yun cope during her dark moments?  Her moments of loneliness, living with CP.

Living With Cerebral Palsy from The Austin Stone on Vimeo.

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